Lance Carter: When we last left our hero....... May 11, 1955 - November 1, 2006

2008-05-27T23:01:00.001-04:00

LANCE CARTER was a drummer/percussionist for over thirty years, and played in every kind of band imaginable! He toured the world with major label artists and was a staple in New York’s downtown avant-jazz scene, frequently playing venues like the Knitting Factory, Bowery Poetry Club and Tonic. Lance appeared on the Grammy nominated release "BLUE LIGHT 'TILL DAWN" with Grammy Award winning jazz artist, Cassandra Wilson; as well as "HIGHLIFE," with jazz guitarist icon, Sonny Sharrock. Lance also appeared with Sonny Sharrock on the theme song to the hit Cartoon Network series, "SPACE GHOST: COAST TO COAST." He collaborated with many notable artists including jazz great Junior Mance, bassists Percy Jones and Eric Mingus; guitarists Marc Ribot, Elliot Sharp, Chris Haskett, Billy Hector and Robert Musso; Grammy Nominee Joan Osborne, singer/songwriter Nadine Goellner, jazz artists Maroon, and producer Bill Laswell. Lance attended the Berklee College of Music, studied with percussion masters, Freddie Waits and Peter Erskine, and his television and film credits include "Good Morning America" and the film "JUNIOR" starring Arnold Schwarzenegger.

Boo.

2007-10-30T23:40:00.000-04:00

Lance died November 1st, but really, in our lives, he died late night on Halloween. Nov 1st is All Saints Day, which is a notable day to die as well, but in our life, if Lance was well and playing, he'd likely have a Halloween gig, or we would have gone to the Village Halloween parade. We'd be out well past the stroke of midnight into the next calendar day, but it would still be Halloween night to us. Boo. This was a holiday I always enjoyed, but now, I don't know, I'm not sure how I feel. As I drive to and from work passing the ever expanding front lawn Halloween displays in Union, I am reminded of just how ironic it is that he died the night he did. Halloween will forever be ironic. It's hard to escape the irony of Lance's dying on a night that is synonymous with front yard cemeteries and casual-speak about death. I suppose it's in keeping with the rest of the unbelievable story. Each and every Halloween night, regardless of whether or not I eventually embrace the holiday again, I will think of Lance and try to feel his presence, which is a most frustrating experience. Wanting to feel something, pleading for anything - proof it all really exists after we die. Waiting for a signal of faith. Until then it is still all pretty much unbelievable.

I've come to a place now where I miss Lance, yes, but I am more accustomed to his absence. I no longer expect to come home to him, and I no longer habitually grab the cell phone to call him. That happened for a while soon after he died, like I was having 10 seconds of amnesia. No more.

We are planting a tree in Lance's memory at his sister Beth's house. We picked a Japanese maple because Lance love Vater maple drumsticks, and he really loved touring in Japan. He kept in touch with a few music fans from Japan. I had a natural river rock engraved to mark the tree. the stone says "PUTT'S TREE", Putt being his family nickname. The tree's been planted for a few weeks already, but the family is gathering this Saturday to dedicate the tree to Lance and place the rock. The rock is very natural. I did not want anything that looks like a grave marker because it's not his grave - it's a memorial tree. His nephews have been watering it.

Our wedding anniversary was one week ago, Oct. 22. I was surprisingly calm, surprising because the two weeks prior I was a mess. Totally. Crying multiple times a day, miserable, angry, nervous about how I'd manage the impending hell week. I think the anticipation of these October anniversaries was in some ways more difficult than the actual days. But I shouldn't speak so soon - I haven't lived through the night of 10/31-11/01 yet. If all else fails, there's xanax. But the anniversary was OK. I went out to dinner with friends John, Jen and Jim and was able to keep a lid on things. Beth called while I was at the restaurant and she was sobbing. October 22 is her wedding anniversary, too. This was a coincidence, but we reveled at the idea of taking anniversary vacations together. It was all to be such fun. Beth was out at a restaurant having her anniversary dinner with Jimmy and was feeling bad. She worried about calling me, but ultimately felt she could not let the day pass without talking to me. She misses Lance, she feels bad for me and feels unnecessary guilt to be celebrating her anniversary on my sad anniversary day. I understand why she feels that way, but I asked her to please enjoy her dinner. I did need to hang up quick because I could be strong for only so long, and she was crying hard. Tears were welling up in my eyes and I needed to abort the call. I'm not afraid to be emotional, but I was in a restaurant with 3 other people, and I really didn't want the waterworks to begin. I feared if they did I would not be able to control it and would have to leave, so I cut the call short. She sounded relieved too. I don't begrudge them their happiness, that nonsense doesn't help anything, but I understand how bittersweet it feels for Beth. It feels that way for me, too.

AMY in the News

2007-07-25T19:54:00.000-04:00

The NY Times recently ran an article about a New York City choral conductor who is surviving amyloidosis thanks to a heart transplant and a soon to happen stem cell transplant. A stem cell transplant following a heart, liver or kidney transplant gives the amyloidosis patient a greater chance of having a complete response to the procedure. The new organ is not damaged, and should the treatment fail, it would take many months or years for the new organ to be damaged to the point of failing, thus extending the patient's life. Lance was not eligible for a heart transplant because he had advanced disease by the time he was diagnosed, his diaphragm was compromised and had other muscular and bone involvement that stiffened and disabled him, making it impossible for him to do the physical rehab needed after a heart transplant. Even if he had received a new heart, his stiffened diaphragm made it difficult for him to breathe on his own. He was way too sick to ever qualify for a transplant.

Get Real

2007-07-10T09:12:00.000-04:00

Jees….so much has happened in the weeks since I updated this blog, that every time I thought about writing more, I never thought I had the time to do it fully and well, so I would turn away from the page. This morning, however, I find myself with a bit of time to burn, so here I type.

Lance’s Memorial Benefit came off as well as I could have ever hoped! Cassandra Wilson, Meshell Ndegeocello, and all the others on the bill filled the Knitting Factory Main Space and in the end we raised $3000 for the Jazz Foundation of America. Here is a good review the show received in JazzTimes. I hope to have the audio and DVD recordings we made available online soon so all can share in the magic of the night. All of the musicians were very happy with the event and there was a ton of good will in the house for Lance and the cause. We used Lance’s drum kit that night, and the drummers in the group told me it was very special to have played them. I almost cannot express the magnitude of the night in my heart – another reason I’ve delayed posting about it. I know, without a doubt, that Lance would have been blown away with the line-up and tribute, and the frustration I felt at his absence was at times overwhelming. As with everything positive that’s happened since his death, this too was unbelievably bittersweet. At once, I was so proud, and so sad. But I do feel that he can rest n peace now. His musical heroes gave him the send-off of a lifetime…literally.

I’m still trying to cobble together a vacation, but it’s been difficult finding a time when my friends and I can do something together. Our first thought was to rent a house in Woodstock for a week and catch one of the Midnight Rambles at Levon Helm’s studio, but now it looks like we’ll be lucky to find a weekend when we can all make it up there together. Then we thought maybe we’d rent a beach house instead, but again, we cannot find a week that works for all. I’ll probably end up spending a few days on Long Beach Island at the end of August, but I was really hoping to escape somewhere new, somewhere I hadn’t visited with Lance. Maybe I’ll hit up Woodstock on my own for a few days, check out the shops, music and go to a Ramble. It’s looking very possible. I need to become more comfortable doing these kinds of things alone, and I can’t keep depending on my friends to distract me. I don’t want to wear out my welcome.

~Lisa

Meshell Ndegeocello confirmed for Memorial Benefit!

2007-05-23T10:45:00.001-04:00

Cassandra Wilson Confirmed for Memorial Benefit!

2007-05-18T23:11:00.001-04:00

I am thrilled to announce that Cassandra Wilson has confirmed and will perform at Lance's Memorial Benefit!!! Stay tuned for more announcements....

Bittersweet

2007-05-07T16:30:00.000-04:00

The Co-Existence Festival this past weekend was a tremendous success! Thousands of people came to the heart of New Brunswick for a weekend of free outdoor music concerts including Richie Havens, the Indigo Girls, the Temptations, Shirley Reeves and many more local and New Brunswick based music acts. The weather was perfect, and the crowd was thrilled beyond anything we could have hoped for. Dozens of people stopped me as I ran around with a walkie-talkie headset and staff credentials to tell me how great the days were and there is massive excitement already generated for future festivals. Coexistencefestival.org has received thousands of hits on the past 3 days, and I feel like we gave birth to a beautiful thing, loved by many. HaloJen Productions is already putting out the call for proposals to host another public art work next spring to be accompanied by another music and arts festival. We worked very hard - many keeping very late nights during the past 3 weeks (on top of my full time job…), and very early mornings on the festival days, but the volunteer crew HaloJen corralled came together and pulled off an amazing feat. I could not be more pleased with the outcome.

As with any of the successes I’ve had since Lance died, this too was a bittersweet moment for me. Admittedly I cried in the car during my drive home each night because as proud as I am of the event and the potential impact it has on my future life plans, I miss Lance all the more. I so much want to share this with him. The reality of his absence is all the more apparent to me at these times, and the recognition that life moves forward and distance passes from the time when I had him here sharing our lives together is a very painful thing for me to accept. He was my best, best friend, confidant, lover and soul mate, and I miss having him here to cheer me on or calm me down when needed. He would have been very proud of this event and of me, and so as high as I feel from the accomplishment, it is diminished somewhat my feelings of loss and bewilderment that he is no longer by my side.

Lance will be heavy on heart this week as his 52nd birthday approaches on Friday, May 11th. I guess I am also sadden by the memories of his last birthday, spent in the ICU at Sloan Kettering. That was the beginning of his real decline, when I knew he would not fully recover from the stem cell transplant, which by then we knew hadn’t really worked. This week last year I slept on the floor of the ICU waiting room for 5 straight nights, fearful to leave the hospital, but unable to sleep in the ICU with him. I almost lost him twice that week, but he held on and I was able to take him home for his last few months. I am very grateful for that.

The Memorial Benefit on May 31 is shaping up nicely. Some press is out already and I will make another push in a week or so. Just waiting on confirmation of a special surprise guest who will put the event over the top…. Stay tuned…

Now that the Coexistence Festival is behind me I can focus full time on making Lance's memorial just right. Many friends have reached out to ask how they can help promote the show, or help in some way, so I'm feeling confident that this will be another success that will ultimately feel bittersweet as well. I should have a poster/flyer soo to share with the world. Lance's dear friend Rebecca Meek is designing the artwork for me. Becca is Meshell Ndegeocello's manager as well as being a successful and accomplished art director for dozens of notable recording artists including the likes of Jay-Z. Rebecca also designed our wedding invitations which were amazing and original. People still compliment me on our invitation.

Buy your tickets now for the

LANCE CARTER MEMORIAL BENEFIT

for the

MUSICIAN’S EMERGENCY FUND

of the

JAZZ FOUNDATION OF AMERICA

Thursday, May 31, 2007 at 7:00 pm

The Knitting Factory Main Space in NYC.

Tickets are $25 and are ON SALE NOW

www.knittingfactory.com

Best,

~Lisa

visit Lance Carter's myspace page:

www.myspace.com/lancecarterdrumz

NEW DATE & VENUE FOR BENEFIT

2007-04-20T20:13:00.000-04:00

OK, let's try this again....

The LANCE CARTER MEMORIAL BENEFIT for the JAZZ FOUNDATION OF AMERICA will now take place on Thursday, May 31, 2007 at 7:00 pm at The Knitting Factory Main Space in NYC. Ticket are $25 and are ON SALE NOW at www.knittingfactory.com. I suggest you buy your tickets early before our press release hits!

LANCE CARTER MEMORIAL BENEFIT

for the

JAZZ FOUNDATION OF AMERICA

The line up includes:

ROBERT MUSSO & FRIENDS: Robert Musso (guitar), Raoul Bjorkenhiem (guitar), Sim Cain (drums), Dave Dreiwitz (bass), Elliot Levin (sax), John Lunar Richey (words)

SONS OF SHARROCK: featuring former members of THE SONNY SHARROCK BAND: David Snider (guitar), Charles Baldwin (bass) Erik Lawrence (sax), Pheeroan akLaff (drums)

HARRIET TUBMAN BAND: Brandon Ross (guitar), Melvin Gibbs (bass), JT Lewis (drums)

CHARLES BURNHAM

PERCY JONES & TUNNELS: Percy Jones (bass), Marc Wagnon (vibes), Walker Adams (drums)

MARC RIBOT

ERIC MINGUS with Catherine Sikora (tenor sax)

ELLIOT SHARP’S TERRAPLANE: Elliot Sharp (guitar), Dave Hofstra (bass), Curtis Fowkles (trombone), Alex Harding (baritone sax), Tony Lewis (drums), Eric Mingus (vocals)

...and more special guests are TBA!

SEE YOU THERE!

~Lisa
vivit Lance Carter's myspace page: www.myspace.com/lancecarterdrumz

Sonny Sharrock video

2007-04-16T19:47:00.000-04:00

Check out Lance playing with Sonny Sharrock back in 1990 in Prague. Sonny used two drummers and Lance is in the white T-shirt. The other drummer is Lance's friend, Abe Speller.

http://www.youtube.com/watch?v=WGk_5wMvQVk

~Lisa

Nobody know what God bringin'...

2007-04-16T01:00:00.000-04:00

“Nobody know what God bringin’,” is a line spoken by Traci Morris in a song on the Terraplane album “Secret Life” Lance’s last recording. I could have never imagined everything that happened with Lance’s illness and passing, but since his death I’ve experienced an almost rapid fire stream of opportunities and connections that are leading me down a different path than I had expected. Once again, outside forces are in play, and the endgame will depend on how I manage the events on the horizon.

The memorial benefit plans are still not settled, but I am close to having an alternate venue locked down. I should hear something this week. I had been going back and forth with the Knitting Factory for two weeks as they tried moving around some booked events to host the show, but in the end they could only offer a room that was too small. I finally reached out to Lance’s friend Andre Cholmondeley's who has enlisted his manager to help me. I am ever so grateful to Andre because I was starting to think I would not be able to salvage the event for the spring. I am still not 100% positive, but I am optimistic that with Andre’s help this will in deed happen. I hope to announce the new venue sometime this week.

I received a message today from Wendy Oxenhorn, the Executive Director of the Jazz Foundation of America, the beneficiary of the memorial benefit. Their major fundraiser is happening on May 17 at the Apollo Theatre in Harlem, and she has invited me to come as a guest of the Foundation. I’m excited to go and finally meet Wendy who has been so supportive and helpful during this whole venue craziness.

Tonic’s closing has awakened a movement of NYC musicians to protest the development of the lower east side and the skyrocketing rents. Once again, a former NYC “bad” neighborhood is now the trendiest place to buy a 4 million dollar condo, but what kind of neighborhood do these people think they are moving to? All of the shops and bars and eateries are being pushed out of the neighborhood, surely with a Starbucks to take over the vacating storefronts. Tonic was a big reason the LES was so hip to visit, prompting people to want to move there. But now it’s gone and what will they get in its place, another $15 martini bar? The experimental music played at Tonic is part of the cultural identity of NYC that is being swept away to Brooklyn. Good for the Williamsburg hipsters, bad for the rest of the world who see the downtown NYC free jazz movement as part of the city’s cultural history. John Coltrane and Charlie Parker, Miles Davis and Sonny Sharrock, these artists created and played in NYC. Musicians who live and collaborate in NYC are exported several times a year to headline major European and Asian Jazz Festivals, but cannot find a venue in Manhattan that holds more than 90 people to book them. I participated in a rally to protest the closing of Tonic this past Saturday. You can read more about it by visiting Take it To The Bridge and other blogs. I made the nifty signs you’ll see the protesters carrying. I was staked out inside the club most of the day coordinating the doughnuts and coffee from behind the bar (of course!) until the police showed up. Two musicians, Marc Ribot and Rebecca Moore made the decision to get arrested for trespassing and the rest of us left the building and relocated across the street from the club while Marc and Rebecca did the perp walk! Lance and I had attended other protests organized by this group so I felt that if he was alive and well he would have been there. It was nice reconnecting with these good folks, who are trying to sustain an indigenous NYC art of free form jazz.

At the demonstration I ran into Gina, a good friend of Brandon’s who owns and books Rose Live Music in Willamsburg, a terrific spot that has live music, great wines and sangria, food, a warm and welcoming vibe, and the most creative wall paper! She’s been very sweet to me since meeting shortly after Lance’s death, and told me of some plans to form a non-profit to cultivate new and experimental music in NYC. I’m very interested to see what develops and am keeping our encouraging conversation in the back of my head as I make some decisions about the future. Also while at the demo one of the organizers told me of a job with the Musicians Local 802 that she thinks would be a great match for me, so you see there are many music related ideas buzzing in my ear! In addition I’ve been talking to Brandon Ross about doing some grantwriting for him. There is one deadline we'll work toward in mid August for a grant from the NY Foundation for the Arts. If it goes through I will get a fee and begin to build my resume as a freelance grant writer. I'm excitied about helping my cousin Brandon (as he reminds me I still am...) while honing my writing skills. As a non-profit mercenary, you're only as good as your grantwriting chops! Brandon does a lot of work for Cassandra Wilson and Meshell Ndegeocello, but he really is a talented songwriter and this funding will support his compositions and perhaps his band Harriet Tubman, which is a project that encourages one to free themselves of the biases or preconsieved notions about what constitutues music and its many languages. They perform both improvs and structured compositions, all the while broadening the definition of how a band of musicians respond musically to the world they live in. The metaphor that is the band's name makes it ripe with potential in a variety of funding categories. The musicians are collectively serving the same funciton as Harriet Tubman did, taking you on a journey toward listening freedom.

After the Tonic demonstration I drove out to Long Island to meet up with Jennifer from Halojen who was promoting a evening with comedian & HBO star Bill Maher on the campus of CW Post. I hung out with her backstage and met Bill very briefly. He does not seem to like making eye contact or engaging in any conversations that are not contractually required, but he killed! The sold out crowd of 2200 loved him and Halojen made some good money on the event, as they also did with their Fab Faux show in Washington DC which was also last night and also a sell out. Next up for Halojen is the Coexistence Festival which is about to jump off in another week or so. The exhibit opens at the end of April and the street and music festival is set for May 5 & 6. Confirmed headliners are the Indigo Girls, Chaka Khan, Richie Havens and reggae masters, Third World. Thanks to my brother Joe’s company, UniData, the Institute for Arts & Humanities will have a tent at the festival and a good weekend is in the works.

Last Tuesday I went to then Amyloidosis Research Foundation Dinner at NYU in NYC. I saw Dr. Comenzo and some of the nurses we had gotten to know over the year Lance spent in their care. The speeches were inspirational and hopeful, the dinner was good and the view was fabulous overlooking Washington Square Park. I still hope to collaborate with them and with Halojen’s help, plan a concert benefit for the Amyloidosis Research Foundation at the State Theatre in New Brunswick, maybe next April in lieu of the dinner.

I’ve been helping my friend John "Lunar" Richey get the myspace page together for his band Lunar Ensemble. Lance was a drummer in the band back in 2000 and they are putting out a recording they made back then that features Lance playing. The band will begin to play out to support the record with a new drummer. I am doing my part to represent Lance’s interests by helping with the site and bouncing around ideas with John. John introduced me to Lance back in 1993 when he took me to a Sonny Sharrock show at the Knitting Factory, and we are still good friends. John is a poet and storywriter and wrote an original piece for our wedding. He will be performing at the benefit and will write an original piece as for that as well. Check out the Lunar Ensemble myspace page and become a friend. The track on the page called "ModDisEase" is a live recording Lance made with the band that is intense. I’ve added this track to Lance’s page as well. On this recording, Lance is also playing with Jack Petruzelli who plays with Patti Smith, The Fab Faux, Rufus Wainwright and Joan Osborne.

Finally, I must share this “in-the-news” related picture sent to me tonight by Jim Nuzzo, an old friend of Lance’s. Lance played in a few groups with Jim, but primarily in a cover band called Network, which did lots of club gigs in the 80’s and was quite popular. I’m guessing that somewhere along the line, Network had the occasion to meet a one, Don Imus! Check out Lance’s Rico Suave expression....and check out the New Wave ties! This pix is from 1981 and Lance was 25 years old.

The next update will confirm the benefit. Stay tuned...

~Lisa
visit Lance Carter’s myspace page: www.myspace.com/lancecarterdrumz

PS....a big thank you to Beth and Jim DeSantis, Lance's sister and husband, for renovating my kitchen last week. I have new cabinets, tile floor and countertop. Jim and Beth did all the installation as I stood around in a stupor, sick with a sore throat and head cold. Jim used up his entire Easter Vacation from school to do this for me, and so their kids pretty much gave up their Easter Vacation, too! I also must thank Lance's mom, Ruthie, for babysitting while Beth and Jim got busy.

SAVE-THE-DATE: June 1, 2007 Venue? TBA

2007-03-28T19:05:00.000-04:00

I received word today that the club TONIC, which was to host the Memorial Benefit on June 1st, will sadly be closing in mid-April. Rumor is they may reopen in a new location next fall. So that leaves the show without a home for now. I am committed to making this happen in NYC, and preferably on the same date. It was pretty difficult to confirm all 25 musicians for June 1st, and many of them travel frequently, so my goal is to find another club that is available on June 1st. It won't be easy, but what is?????

~Lisa

visit Lance Carter's myspace page: www.myspace.com/lancecarterdrumz

SAVE THE DATE: Tonic - June 1, 2007

2007-03-15T20:19:00.000-04:00

Long time, no blog. I promised myself that if I continued this blog after Lance’s death that I would try to not become too obnoxious and post about every nail broken or tear shed. Some very good things are happening, too. The first of two benefits in Lance’s memory has been confirmed in NYC for Friday, June 1, 2007 at the club Tonic. The show will feature many musicians from the downtown avant jazz and experimental scenes, all friends and collaborators of Lance’s. The show will benefit the Jazz Foundation of America, one of the musician aid charities that helped us while Lance was ill. The Jazz Foundation is very happy to be a part of the night and we expect the Executive Director, Wendy Oxenhorn, to come and say a few words.

The line up will include:

ROBERT MUSSO & FRIENDS: Robert Musso (guitar), Raoul Bjorkenhiem (guitar), Sim Cain (drums), Dave Dreiwitz (bass), Elliot Levin (sax), John Lunar Richey (words)

MEMBERS OF THE SONNY SHARROCK BAND: Charlie Baldwin (bass), Erik Lawrence (sax), Dave Snider (guitar), Abe Speller (drums)

HARRIET TUBMAN BAND: Brandon Ross (guitar), Melvin Gibbs (bass), JT Lewis (drums)

CHARLIE BURNHAM

PERCY JONES & TUNNELS: Percy Jones (bass), Marc Wagnon (vibes), Walker Adams (drums)

MARC RIBOT

ERIC MINGUS

ELLIOT SHARP’S TERRAPLANE: Elliot Sharp (guitar), Dave Hofstra (bass), Curtis Fowkles (trombone), Alex Harding (baritone sax), Tony Lewis (drums), Eric Mingus (vocals)

I will post more specifics as they are confirmed. Can't wait to see you all there!

~Lisa

visit Lance Carter's myspace page: www.myspace.com/lancecarterdrumz

The picture above was taken by Lance's bandmate and friend Eric Mingus. It was taken in May 2005 during a European tour with the band Terraplane. This tour turned out to be Lance’s last. Many thanks to Eric for passing it along. Also pictured are Elliot Sharp and Curtis Fowkles.

Support

2007-02-21T10:59:00.000-05:00

I've finished a funding proposal for IAHE and am pleased with the outcome. We are seeking funding to participate in the Co-Existence Festival that is coming to New Brunswick this May. The festival is centered around an international touring art exhibit from the Museum on the Seam in Jerusalem called Exhibition Coexistence. Rutgers and the city are sponsoring the exhibit which will be displayed throughout New Brunswick and the Rutgers campuses. The two day festival will feature live music, food, arts & crafts vendors and the Family Fun Zone where IAHE will have a tent and lead workshops and multicultural arts projects for kids. The proposal I wrote will be submitted to a few corporations later this week and then we wait and see. I am crossing everything I have two of!

I went to the bereavement group last night only to find out that I had the wrong night. I walked in and a group was in session, except it was for spouses over 55. They took one look at me and told me I was in the wrong place. I think my group actually meets next week. I need to follow up on that. I had a rough weekend last week at the Paper Mill summer auditions. We auditioned 500 kids for our summer musical theatre program, and it is a very long Saturday indeed. I am pretty much isolated in the theatre with the other panelists for 8 hours. We must turn off cell phones so as to not interrupt things. In past years I would step out and call Lance a few times, check in, touch base. When he was sick I would call even more frequently to check up on him and whichever caregiver would be with him that day. So last week I had a few moments when I actually forgot that Lance had died. We'd find ourselves in a break moment, and I reached for my phone to call home. I'd flip open the phone only to have reality come crashing in, nobody is at home but the cat. No one to call. This didn't happen just once, but it happened three times that day. I got angry with myself - what's my problem - how could I forget? It really set me off and by the time I got in my car to drive home that night I was pretty blue. My counselor tells me this is not so unusual, but still, I felt like I was crazy.

This coming Saturday is a meeting of the NY Amyloidosis Support Group in Manhattan. I will be going and meeting with the president of the Amyloidosis Research Foundation to talk about the large music benefit I want to host next fall. I will have some new organizational logos to share with her and will get the lowdown on a dinner-dance benefit they are throwing in April at NYU Kimmel Center. I'm not sure that I can afford to go, but we'll see. Maybe I can work at the event instead of paying to go. I'd love to be able to contribute to the Foundation, but that's just not possible now. I am trying to make contributions in other ways. Dr. Comenzo will be the speaker at the meeting which should be enlightening. It's hard for me to keep up with the amyloidosis updates I still get via the email listserv group. Back when Lance was ill I devoured all of the information I received looking for something that would help Lance or at least explain to us what the hell was happening. Now when I get the messages I usually skip over most of them. I don't need to know about every clinical drug trial in the pipe. Amyloidosis consumed my life for the past 2 years and I need a break. I don't contribute to the group too often because I don't want to bum out the patients that are still fighting hard to beat the disease. New patients will post looking for hope and optimism, and I do not have much of that to offer. The disease took Lance so quickly and mercilessly that I cannot be of any help to those currently suffering. Lance's suffering is still so clear in my memory that reading about the complications others are facing hurts too much. The support group meeting will be a lot of this, but there will also be others there who lost loved ones from this rare disease, so I look forward to communing with those folks.

After the meeting I will be zooming down to Asbury Park to see Patti Smith at the famous Stone Pony Saturday night. Many of my friends are going and it's become an annual event. Lance and I have a friend, Jack Petrucelli, who now plays with Patti Smith as well as the Fab Faux and Joan Osborne. Jack wants to be a part of any NJ music benefit I am planning, but he is such heavy demand it will be hard to pin him down to a date. I am back to square one in finding a place to hold the NJ benefit. The one club I was counting on, The Wonder Bar, is about to be the next casualty of the Supreme Court ruling on eminent domain. The bar is directly across the street from the Asbury Park Convention Center on a prime corner, and the Asbury Park Development Corporation wants the land. The bar is fighting the take-over, but currently they are not booking any music past March. I have a few other ideas on where the benefit can happen, I just need to make time soon to go down to Asbury and scout them out. Maybe next week.

~Lisa

visit Lance Carter’s myspace page:
www.myspace.com/lancecarterdrumz

Dance

2007-02-07T11:51:00.000-05:00

I was set off this morning by hearing our wedding song for the first time since Lance died. I had on VH1 Soul and the Alicia Keys video came on for “If I Ain’t Got You” and it stopped me in my tracks from the first notes. The last time I heard it was on our first anniversary, Oct. 22, 2005. Lance had been diagnosed the week before. He was still able to stand for short periods back then, so we played the song and sway-danced in the living room. We both cried through the entire dance. I stopped listening to it after then because it was too painful. When I heard it today I tried to recall the dance at the wedding, when the words made us smile and the future looked bright. I prefer to remember that dance.

I've been talking to God a lot lately. I don't ‘pray‘, necessarily, but I talk and ask questions. I don't practice a religion, but feel like God and I have an understanding. I try everyday to do the right thing and be considerate and kind. I try to do the right thing even when no one else knows it. I practice but don’t preach. I have a lot of room in my heart for other views on this topic, and have close relationships with a wide swath of people, from believers to atheists. I suppose like many, I fall somewhere in the middle. I think that God is the imagery we attach to things like fate, destiny and chance. I don’t think of a father seated in heaven, I sense this ‘thing’, an intangible aura of power, an all-knowing presence, a connectivity.

I believe God brought Lance into my life for us both to taste real happiness and honest love. But I also believe that God brought Lance into my life to help him die. What other possible reason can there be for the irony. If our destiny is written on a cocktail napkin somewhere before we were born, then it is true that Lance was always meant to die at 51 from amyloidosis, and I was always meant to help him.

I suppose I know why God chose me for this tall order. Amyloidosis is a particularly complex and devastating disease with many fronts, effecting many systems. Facing this disease is not for the faint of heart, so I suppose it’s an acknowledgement from God that I was up for the battle, yet I await that ‘ah-ha’ moment that teaches me how all this will make me more evolved. One of the questions I often ask is, “What the fuck?”

~Lisa

visit Lance Carter’s myspace page:
www.myspace.com/lancecarterdrumz

Boxes

2007-01-28T21:40:00.000-05:00

I heard from Dr. Comenzo, Lance’s amyloidosis specialist from Sloan Kettering. He told me Lance’s autopsy showed massive amyloid infiltration of his diaphragm and heart. We knew about the heart and suspected the diaphragm, but now it is confirmed. The BiPAP machine Lance depended on the last four months of his life tried to make up for his weakened diaphragm, but ultimately the amyloid production never really stopped. It slowed down, but never fully stopped. One theory I've read about is that amyloid may likely interfered in a fatal way with the electrical circuitry of Lance’s heart, stopping the beat. His heart was unable to restart because it was stiffened with amyloid. Even if we were aware that his heart had stopped, Lance had signed a DNR and they would not have used defibrillator paddles on him which might have restarted the beat. Dr. Comenzo told me that Lance’s donated tissues samples are now in London being used by a researcher who is studying the very same gene that caused Lance’s amyloidosis. Lance had a genetic test done to make sure he did not have the familial type of amyloidosis which would be important for his sisters to know. He did not. Lance’s case was primary amyloidosis, which has several variants. Researchers are studying the genes of amyloid patients with certain variations and Lance’s is now among them.

Yesterday I made a lot of progress making some order out of the spare bedroom in the condo. The room was an absolute mess and was piled high with Lance’s drum equipment, the remaining medical equipment, remnants and gifts from our wedding, and everything else that we had no other place to store. We called it “the garage”. Two friends came over and we emptied the room, sorted items into boxes and then returned the boxes to the room. I am not ready to part with any of Lance’s things, but I needed to straighten out the mess so that I could actually get into the room and take inventory. It had gotten so bad that I had begun piling things up in the doorway because I literally could not take a step into the room! Gail and Trina kept me focused, and we got through it all in a few hours. My friend Gail slept over and we went grocery shopping today. I was running out of food in my pantry and really can’t afford to keep eating out or getting take-out, so it became necessary to finally go. I didn’t make a grocery list because I needed everything. We went aisle by aisle and I filled the cart. I should be OK for a while.

One thing from the spare room that I have bagged up for donation was hundreds of Lance’s drumsticks. He had two large dresser drawers filled with drumsticks from the past seven years – all used! Lance did not throw any sticks away, but he never gigged with them twice! I’ve kept a nice selection, especially the Vater sticks with Lance’s signature, but I’m donating the rest to an arts education group I support as a Board member, the Institute for Arts and Humanities Education (IAHE). IAHE will use the sticks in drumming workshops it does at elementary schools. The group provides inter-arts workshops to school children and families. Most of their exercises include themes of diversity and understanding, and tens of thousands of NJ kids have experienced one of their workshops over the past 25 years. They are the best at what they do and I am honored to be working with them still. I became involved with group in 1982 when at age 16 I studied acting at Rutgers over the summer. IAHE administered the program and it's where I met my friend, Maureen Heffernan, now the Executive Director of IAHE, but back then she was my acting teacher. Maureen became a mentor to me and over the years I can trace every arts related job I’ve had back to Maureen and to the network of people I’ve met through her. I am very good at my job, but it never hurts to know people! I’ve worked full time for IAHE in the late 80’s/early 90’s, and I’ve been on the Board of Trustees for many years thereafter. When Lance became ill I transferred to the Advisory Board, which has little time commitment, but now I have returned to full Trustee status and am very happy to be working with them again. Maureen even presided over a segment of our wedding ceremony when she led Lance and I in a wrist binding ritual that symbolizes the union of two families. It is common in the marriage rites of many cultures, including African and Celtic.

I've made a bit more progress with the benefits and in positioning the Amyloidosis Research Foundation (ARF) for a deeper relationship next fall. A friend and graphic designer I am working with on another exciting project (TBA!) is donating her services to create a real logo for the Foundation, and will also punch up the graphics on their website. I also had another conversation with HaloJen Productions about working on a larger benefit for ARF and we had some good ideas on how we might add an amyloidosis awareness component to the event. The local hospital in New Brunswick, Robert Wood Johnson University Hospital (RWJUH), was unable to diagnose Lance’s amyloidosis. We navigated RWJUH for 4 months seeing five doctors, even forcing an inpatient stay via the ER to test for disease like Lupus, Muscular Dystrophy or Lou Gerhig’s disease (We had seen so many doctors and every one scratched their head. We were desparate and decided to go to the ER at RWJUH. I knew it might be an ordeal to get Lance admitted this way, but I packed a suitcase and a cooler and we went and presented Lance's symptoms to them. They tried to send us home three times telling us that Lance needed to see a specialist as an outpatient. We refused to leave. Finally, I went balistic in the ER and demanded they admit him and run tests. They did and misdiagnosed him with a form of arthritis most typically found in elderly caucasian woman. Hmmm...Something didn't match us here...) Amyloidosis was never mentioned, considered, or looked for in these tests. Dr. Comenzo has agreed to give a talk on the disease for the RWJUH cardiologists, nephrologists and hematologists, and students at the nearby University of Medicine and Dentistry of NJ (UMDNJ). So if I can set it up, he will come to New Brunswick.

On the music front, I went to the Knitting Factory in NYC last Saturday to see Steven Bernstein's Millenial Territory Orchestra. I discovered the band when making connections with some musicians about playing a benefit, and a few of the guys play with this ensemble. MTO was broadcast live from NYC on New Year's Eve on NPR's radio program, Toast of the Nation. If I had discovered them earlier I may have gone to heat them instead of to Times Square that night. In any case. If you ever get a chance, go hear them play. They are a nine piece band with horns, violin, guitar, acoustic bass and drums, and they play songs from the American songbook with a slightly fractured big band approach. In additon to standards like "Summertime", they also play Prince's "Little Nikki" and the Grateful Dead's "Ripple". You can hear the NYE rebroadcast on NPR's Toast of the Nation web page. I also had plans to see a few other musical performances last week, but the intense cold blast we received and an overall feeling of blah kept me in the house.

Last week I had my first bereavement group meeting and I found it helpful. I’ll plan to go again next month and join the others on their post group excursion to a local diner. I didn’t go this week because I was feeling a bit shy and hadn’t been home all day (I’m still having guilt about my lonely cat), but I will go next month. This week there were five people in the group, 3 women and 2 men, all of us a surviving spouse under 55 with no children. The specificity of the group really directs the discussion to topics that are relevant to everyone. I discovered my aversion to supermarkets is very, very common. Each member is at a different point in the grief process, but all have experienced a loss of a spouse or partner within the last 2 years. I was the most recent widow in the group at 2+ months.

peace,
~Lisa

visit Lance Carter's myspace page:
www.myspace.com/lancecarterdrumz

"Don't let your eyes adjust to the dark."

2007-01-13T11:53:00.000-05:00

In my sometimes frantic attempts to distract myself from the loss I feel from Lance's passing, I have been getting out and staying out as much as possible. While this helps momentarily, I am finding that I am less and less comfortable in my home and the resulting mess of laundry and housework is beginning to give me a brand new, fresh anxiety to deal with. So this weekend, with the exception of Sunday when I am going to see The Color Purple on Broadway with Lance's family, I will be staying home and taking care of some business. I kept on top of things much better when Lance was here. Being housebound for so long, I had plenty of time to maintain the house, but now it's become more so a place where I end my day and wait for the sleeping pills to kick in.

I joke with my friends that I am living like a bachelor now, but there is a element of truth to that. For example, I've yet to do any grocery shopping since Lance died. It's been over 2 months and my fridge is bare and the pantry inventory is fading. For some reason, the thought of being in the supermarket, walking aisle to aisle makes me sad. I don't want to be shopping just for me, I want to be shopping for us. When Lance was ill and had many dietary restrictions I would go on sojourns to different supermarkets looking for new low sodium items, soft foods, protein additives or energy boosters, and I would spend long periods there reading labels and comparing products. These trips were little escapes for me as well, but I mainly felt it was something I could control while so much of what was happening to us was beyond any one's control. I associate the supermarket with my desperation to fix Lance. So I just don't go. I buy lunch everyday at work and on the weekends, if I am even home, I order in food and will buy a bit extra to have as leftovers through the week. I'll shake this aversion to grocery shopping eventually, but for now I am just trying to cope. I met with the moderator of the bereavement group that I will be attending. The next meeting is on January 23, and I look forward to having the group for support. My friends are awesome and very attentive, but I do not want to become a broken record with them. The group should allow me to have time with other broken records, and maybe help me to move forward with strength and confidence.

I met last night with an old friend of Lance's from high school, Andy Bernstein, also a musician with his New Orleans style roots music band the VooDUDES, who happens to be recovering from the loss of his longtime girlfriend who was tragically lost early last year in an car accident. Although the circumstances are very different, we can relate on how it feels to have your life and the expectations for the future turned on its head. It helps me to talk to others who understand the see-saw that is grief. I've known Andy through other avenues (Teen Arts) long before I ever met Lance, but hadn't seen him myself in probably 10 years before seeing him at Lance's funeral. When I asked him for permission to write about him he said that I could but to not refer to him as a "saint" or anything. So, he's "no saint", but he is a sweetheart and has offered his friendship and guidance to me for which I am grateful. Andy was in bands with Lance in high school and they were running buddies. They hadn't seen one another for a while before Lance's death, but their bond survived as did these photo's that Andy sent to me from the early 1970's of their high school band called MOONSHINE. One band photo is a tribute to an Allman's Brothers Band album centerfold where the band is photographed naked. The teen heroes gave the idea a whirl and came up with this classic image. Andy is the dark haired boy in glasses in the lower left corner of the group shot. They were not able to use the photo to promote their gigs at school because of the questionable "dark area" belonging to Cary "Rock" Miller, visable just above Andy's shoulder, so the second pose of them clothed had to do that job. Others in this naked photo are Eddie "Pi" Cohen, Bob "Boo" Bernstein (Andy's kid brother) and Mitchie Rubin, who was not band member, but apparently into the "get naked" idea! Andy also sent to me the high school head shot photo of Lance with the "hippy-drippy halo" effect. Andy, convinced that he would have to flee to Canada to avoid being shipped off to Vietnam, asked his friends for pictures of themselves to remember them by. Lance gave this photo to Andy (who did not end up in Canada). It is another example of my wishing Lance was here to ask him more about all these things. I knew so much about his life, but sometimes, when I see photos like these, I feel like I knew so little.

One of the activities that has been occupying me lately is planning the music benefits in Lance's memory. I am planning three shows and I feel it is important that they happen in this next year while Lance's passing is still fresh in the hearts and minds of those that loved him and his music. The three benefits will each be a little different. Two will be in small clubs and will raise money for the music charities that helped us, and the third will focus on raising significant money for the Amyloidosis Research Foundation. The first benefit will be in NYC in the spring and will involve Lance's jazz musician friends, the second will likely be in Asbury Park, NJ in the summertime and will feature the blues, soul and jam bands that Lance played with or admired. The last larger event will hopefully feature a national act sometime next fall at a larger venue. The first two events will really be held in Lance's memory, but the third event will have a broader appeal and one would not necessarily have to have known Lance to buy a ticket. As soon as I have confirmed dates and line-ups I will begin to promote the events. The first NYC benefit is shaping up nicely, and I hope to be able to announce specifics soon. Needless to say, all of the musician's I've connected with are anxious to help, so I think we will really have something special happening.

I made a new year's resolution to go out and pay to hear live music regularly. Indie musicians really depend on folks coming out and paying a measly few bucks to hear them play. I could probably swing a few freebie guest list spots from musician friends if I asked, but not this year. 2007 is the year of NO GUEST LISTS. This past week I went out to see our friend Nadine Goellner in NYC and also enjoyed another singer-songwriter who played named John Francis from Philadelphia. He sang a song called "Love in the Fall Out Shelter" which has a chorus that goes, "Don't let your eyes adjust to the dark." That is what I am trying to do everyday.

more soon,
~Lisa

visit Lance Carter's myspace page:
www.myspace.com/lancecarterdrumz

8 in 1,000,000

2007-01-06T12:26:00.000-05:00

On New Year's Eve the crowd at Times Square was estimated to be one million people. As I looked out over this endless sea of revelers from our hotel window on the 32nd floor, it occured to me that Amyloidosis has an occurance rate of 8 people in a million, so just 8 of those tiny little specks of people below on the street may one day develop this monsterous disease. That visualization really hit home with me, and makes my efforts to use Lance's name and music connections to raise research dollars and awareness much more urgent. In the tiny amyloidosis commuinty (less than 3000 patients in the US), Lance's story may be one that breaks through and makes a difference. With the help of friends and fans, it will.

~Lisa

visit Lance Carter's myspace page:
http://www.myspace.com/lancecarterdrumz

2:09 am

2007-01-05T16:28:00.000-05:00

Last night I was having a hard time. I have the most difficultly coping late at night when the house is so quiet and the distractions fade away. I double check the locks on the doors and make sure the porch light is on - things that Lance always reminded me do. Especially when he was ill, I would make sure to tell him each night that everything was locked down and that we were safe. He wanted to hear that because he had surrendered that task to me once he became disabled, after seeing to it himself for many years. So each night I still tell him that everything is secure. I fell asleep somewhere around 1am, putting my TV on the sleep timer and closing my eyes. I think last night fell asleep to "American Chopper"!

At exactly 2:09 am the phone next to my bed rang. The ringing startled me from sleep and it took me a few moments to come to and realize that the phone really was ringing. I looked at the caller ID, but can't see anything without my glasses anymore, so I fumbled through my side drawer to find them. What I could tell through my blurry vision was that no number appeared on the caller ID, but I couldn't make out words. After 3 rings, the ringing stopped without the answering machine picking up the call. I finally found my glasses and read the caller ID. It read "private caller." I thought for a moment, maybe, please, could it be another sign from Lance? I don't want to sound too crazy, but grief has me thinking all kinds of things, and since I just survived the unthinkable, I am more open to the idea that the impossible sometimes happens.

I laid awake for another half hour, upset that I didn't answer the phone, and anxious that it may ring again. If it was an emergency, I thought, someone would surely call back. No second call came. Eventually I fell asleep and in the morning right before I awoke, I dreamt that my Uncle Eddie, my father's brother who passed away 2 years ago, was standing in front of me and tossed a glass of water in my face, as if to say, "Wake up!" Uncle Ed was a card and always quick with the jokes, so this behavior, while extreme and someting he'd never do to me when alive, isn't so unbelieveable. I have never dreamt of Uncle Ed before this morning, and still have not dreamt at all of Lance. I woke up feeling uneasy and disappointed so I reached for the phone and saw again that a call had come in at 2:09 am. I dialed *69 and sure enough the message said that the call came from a prvate caller and that the *69 feature did not work on the caller's number.

I half jokingly said out loud, "Call me back, sweetie. I'll answer this time." I headed to work and once there I called my sister-in-law Karen. Karen and Lance were very close, and her birthday is on December 24th. She told me last week that very early on the morning of her birthday, her phone rang. It startled her from her sleep and she too, did not answer the phone before it stopped ringing on its own without the answering machine picking up the call. She said her caller ID read "private caller." She immediately chalked it up as Lance reaching out to her on her birthday, the first she had without him. At the time I listened to her story, hoping in some way it could be possible, but at the same time telling myself that we believe the things we want to in this life, not necessarily because they are true, but because we hope they are true.

So when I spoke to Karen I said to her, "I think Lance called me last night. It was just like when your phone rang on your birthday. It rang at 2:09 am and the caller ID said it was a blocked call."
She said, "Lisa, that's exactly the same time my phone rang, 2:09!" I was floored.
"Really?" I asked.
"Yes!" she replied.
"No, really?" I asked again.
"Yes, yes really, Lisa! It was 2:09!"

We both started to cry instantly. The hospital listed Lance's time of death as 2:20 am, but he had passed away in his sleep sometime earlier. Lance's mom was with him, but she had fallen asleep in a chair next to his bed and was only awoken by the nurse coming in to take Lance's vitals. I never knew the exact time for sure. Perhaps he really left this life at 2:09 am, and this is his way of telling us?

I feel even more regret for not answering the phone. You can bet I will if it ever happens again. Just so you don't think I'm too crazy, I understand that if and when I do answer another 2:09 call, I know there will be silence on the other end, but still, it makes me feel hopeful that Lance is at peace and watching over me.

I did finally hear back from the bereavment group and met with the moderator earlier this week. We had a nice talk and she told me she hears many, many stories from group members of them finding little momentos (my anchor?) or experiencing occurances that are too unbelievable to be coincidence. She told me that in all the years she has worked with grieving families, she has come to believe that these are in fact signals from loved ones, telling us they are still present in our lives, although not in a physical state. If I wasn't sure before, I believe it now.

Sweet dreams,
~Lisa

8:45 pm UPDATE: Just talked to Lance's other sister, Beth. She said when her mother called from the hospital to tell her Lance had passed, she looked at the clock and it read......2:09 am. Beth's birthday is tomorrow, January 6, so she'll be waiting for her call!!

visit Lance Carter's myspace page:
www.myspace.com/lancecarterdrumz

A New Year

2007-01-01T14:18:00.000-05:00

I returned from Florida last week and still have some unpacking to do, but I am glad to be home. Lance's family had a Christmas gathering on 12/30, so I picked up Lance's cousin Brandon in Brooklyn and we head out to Long Island for the day. I love spending time with the "fam" because they always make me feel better and I feel less crazy when I am with them. They loved and miss Lance in the same way that I do, so we laugh and cry together, usually moving between the two with ease. I brought out some of Lance jewelery to give to his sisters and nephews as mementos. Lance did not have a lot of pieces, but there was enough that each received something that was his, instantly making his costume rings and watches invaluable.

I headed into New Year's eve this year ready to brace myself once again for another first. I've always like NYE because I like a good party, but moreso because I am sentimental. The strike of midnight on NYE always makes me reflective and I've shed a tear or two on NYE's past, even before my relationship with Lance, or anyone else for that matter. I get caught up in the iconic moment, 60 seconds of history in motion, the rest of the world aware of that moment too, time zones aside. I often wonder if the world collectively thought about a moment like that in some other context, would it have a quanitfiable response from the cosmos? Can all that human energy be harnessed? Hmm... In any case, Lance and I spent every NYE together for the past seven years. He usually had a gig, most often with his tuxedoed show band called Pulse. Musicians make a lot more money on NYE. It's the one night when they usually double their normal take. It was always good to get that bonus bump of income to start off January, but his year there is no such windfall.

I decided early on that I wanted to go out on NYE. I did not want to be home alone, and I was not really up to a house party which, at my age, are mainly populated by couples and kids. I did not want the strike of 12 to arrive with symapthetic glances my way before the couples smooch and ring in the new year. I thought it best to be out and about, a member of the single public at a club or concert. I felt I needed to be distracted for mainly, ten minutes - the five before and after midnight. I spent the past week looking online for NYE options that would fit the bill and found a couple of choice. But then, I heard that my friend Robin from Orlando was in NYC and as it happened was staying in a hotel right smack in the middle of Times Square. I've never been drawn to that mob scene, epecially since 9/11, but Robin was in a hotel with a good view of the action from the 32nd floor, and the hotel had a big terrace on the 3rd floor that allowed one to hover just above the crowd on the street. Now, I've seen those throngs of people on TV each year and rolled my eyes at the insanity of them choosing to show up at Times Square at 2pm to get a spot near the action, and then standing in that spot for the next 10 hours. But with the hotel option in the mix, I thought this could be just the kind of distraction I was looking for. So, my friends Jen and Jim picked me up and off we went to Manhattan. We drove to Jersey City and parked on the street, then took the PATH train and subway right into the heart of Times Square, arriving around 6pm. We lugged a case of beer, liquor and wine with us, and after emerging from the subway, embarked on a challenging 45 minute quest to get through the blockades and security check points to move into the blocks immediately surrounding the action. There was a massive crowd and massive amounts of police everywhere. Finally we got a hold of Robin who met us at a checkpoint with her hotel key, the only way to avoid waiting on a huge line to go through security was to prove you were a hotel guest. Robin, who has the gift of the gab, sweet talked a cop who let us jump the line (with our liquor) and we were in. Once we got situated upstairs in the hotel, things were much smoother and I enjoyed everyone's company and the conversation. At 11:30 we head downstairs to the terrace and rang in the New Year with a million others. The hotel was packed with international travellers, so it really had a worldly flavor. I never imagined I would be in that iconic spot at that iconic moment, but I admit it was pretty thrilling. Will I do it again, probably not - but now I can check it off the life list of to-do's. Of course, I thought about Lance, as I always do, but I kept it together and let the energy of the crowd hold me up. My friends were great as usual and I felt good about crossing over into 2007 in this way. At about 2am we left the hotel, hit up one Times Square bar for a night cap then head back to the car in Jersey City.

Today is the two month mark since Lance died, and I feel with the mourning and holidays, that I've been in a state of suspended animation for the past 8 weeks. I am really looking forward to getting back to work and picking up the pace. My job really starts to heat up now, and soon I'll be moaning over how busy I am.

I resolve for 2007 to be kind to myself, to continue to trust my instincts and do what feels right, and to keep breathing.

peace,
~Lisa

visit Lance Carter's myspace page at www.myspace.com/lancecarterdrumz

Journey

2006-12-25T19:43:00.000-05:00

I must admit, the last few days have been surreal. I am still inching through these holidays and though I do typically enjoy Christmas (I'm a giver), it feels bittersweet this time. Last Christmas was spent at Sloan Kettering with Lance in and out of a morphine drip dreamland. I remember leaving the hospital last Christmas Day to go for a short walk. I like New York on a holiday, especially ones like Christmas when everything seems to stand still. The city has a dreamlike quality. The streets are empty and the few people you do see out and about are walking their dogs. It's like that after big snowfalls, too. I imagine this is what NYC may be like in heaven. Last year I walked a few blocks and wound up in a bar for my annual Christmas cocktail, a White Russian. I had just one then returned to the hospital. Lance was still asleep. I don't think he even knew I had left. Outwardly I was very admitant that last Christmas would be Lance's only bad one, but in the depths of my heart, I feared that our hospital Christmas would be our last. I knew the survival statistics but I spared Lance of that knowledge. I didn't have my White Russian today, yet. Maybe it's time for new traditions?

The Auto Train to Florida should have been the same as the dozens of trips I have taken over the years, but this time, I was overwhelemed with emotion just standing on the platform with my suitcase. Lance was to have made this trip with me and his absence was very hard to swallow. I knew I would not be a good dinner companion and was not really up to the chit-chat, so I asked that my dinner be served in my compartment. At first the attendant said they could not as they had a lot of elderly on the train who needed that service, so I explained that I had lost my husband last month and couldn't face dinner with strangers. You see, in the dining car the four-top booths are filled up, so if traveling alone you are bound to be seated with three others. I am not one to pretend the big white elephant is not in the room and I thought I would likely spoil their dinner with my sad story. I typically don't mind meeting and chatting with new folks - Lance was very good at this spending the hours he did playing in bars, talking to strangers - but I just was not up to the task that night. The train agent, who seemed shocked at my statement, looked up from his clipboard and asked me, "He didn't die in Iraq, did he?" I was stunned at first, but I assume he thought maybe, since I am a "young widow" this might be the case. I told him, no, he didn't die in the war. In my mind, though, I thought, well not that senseless war, but an entirely different senseless war. The agent checked off some boxes on his clipboard, and the deal was done. I ate dinner in private, had four glasses of wine and watched "Lost in Translation", a brilliant film that I had never seen. It helped pass the time and got me to thinking about how wonderful it is to be creative. I admire the filmmaker (Sophia Coppola) very much, and felt inspired and gave myself permission to think bigger, dream bigger, hope for more. This is what art does for you. It was a stirring moment, actually. It had been a long time since I had given so much serious-creative thought to the subject of me. What can I take and learn from the experiences of the past 2 years? What's next? The palette is clean. What colors shall I blend?

So I made it through this Christmas, my first without Lance, but also, hopefully, the beginning of many wonderful things to come. I still cry everyday, still feel the pain of being alone without my love to walk through life with me, but I also feel hopeful that there is vast potential in me, and soon it will be clear to me how the journey I've been on has prepared me for the journey to come.

peace,
~Lisa

MYSPACE page

2006-12-17T16:33:00.000-05:00

Hi Everyone,

I've created a posthumous MYSPACE page for Lance, to remember his music, but also to develop a network of friends and fans to receive updates on several music benefits that are in the works. My goal is to raise awareness of AMYLOIDOSIS, the rare blood disease that cut short Lance's career, and also to raise money for the musicians' aid organizations that gave support to Lance and I during his illness. Independent musicians like Lance face many uncertainties should serious illness or injury prevent them from working, and organizations like MusiCares, The Actor's Fund, The Jazz Foundation of America, The Musician's Foundation and Sweet Relief provide help and hope to musicians who work falls outside the traditional framework of the musician's union. There are many, many musicians who may come to rely on these organizations one day, and as musician or music fan, we need to support and grow these organizations so that they are ready to help when help is needed. Lance was unable to play or work for 18 months prior to his death, and these groups helped us by offering grants that allowed us to pay our mortgage, insurance and medical bills for one year during Lance's illness.

Lance's myspace page includes tracks from recording he has made with a variety of artists, press reviews and photos.

If you have a MYSPACE page, please add Lance as a friend. (If you don't yet have MYSPACE page, now is the time to take the plunge!) Please pass this link along to your friends and help me spread this important information.

Visit Lance's page: http://www.myspace.com/lancecarterdrumz

While your at it, visit my page, too!: http://www.myspace.com/lisacooney

I will also continue to update this blog.

Thank you for keeping Lance's music and memory alive, and for helping me to honor his memory by supporting the organizations

much love and respect,
~Lisa

Anchor

2006-12-13T11:52:00.000-05:00

Today is the one year anniversary of Lance's stem cell transplant at Sloan Kettering. It was a difficult time, but still a hopeful day for us. We saw it as the beginning of the road to recovery. Today would have been Lance's Re-Birthday. Here is a look at the day that was, one year ago.

I've been feeling a bit better despite my daily moments, but yesterday something crazy happened. I brought Lance's drum to the funeral home in the morning to have his ashes transferred, then brought the ashes home and went to work. Later that night when I had returned home from work I sat in the living room for a few hours. A friend called and while I was on the phone I noticed something shiny on the floor directly under the drum, below the glass and iron table where Lance's ashes now sit. I walked over and looked down and found a silver charm on the rug. I've can't say that I have ever seen it before. It is an anchor. I struggled to remember if I had bought such a charm in the past or recalled seeing it on someone else, and for the life of me, I've never seen this charm before. I haven't had a visitor in my home in over two weeks. I don't know what to make of it. The friend on the phone thought it was a sign from Lance. I am a bit speechless. I'm not sure how to explain the anchor's sudden appearance, but for now I put the charm inside a locket I wear that holds pictures of Lance and some of his dreadlocks! Hmmm....??!!

~Lisa

Secret Life

2006-12-07T16:38:00.000-05:00

I never intended this blog to be about me. It was always intended to be about Lance and to keep friends and family updated on his condition, but since I am what's left behind, this is what we have. Welcome.

Throughout the past year, understanding that Lance's illness was incurable, I knew that one day (although not as soon as it happened) he would leave me. I would think about what life would be like without him, and I would think to myself that my job would remain fairly intact, and of course my family and good friends would always be there to help me grieve and eventually move on. This holds true. My job has sustained me during the days, and my friends have swooped in and check on me frequently, making sure I get out of the house.

What I did not prepare myself for, probably out of self preservation, was the reality of being alone in the wake of the 18 month tornado that dropped into our life and destroyed it altogether. There is no FEMA to call for this kind of natural disaster. It is a journey that I am feeling my way through, literally one minute at a time. Forget one day at a time, the days are endless. My eyes open in the morning as I stir from my trazadone/xanax induced slumber, and my first thought is always of Lance. The pillow next to me confirms the truth of this day, and every day - he is gone, I am here.

Being at home alone is so much harder than I anticipated. I am stuck in a murky space between needing to remove Lance's clothes and drums and assorted artifacts of a life lived, but still, I am not able to part with a single molecule that is related to him or is representative of his vitality. There are endless triggers to my grief, and I know that so long as these items stick around, so too will my feelings of loss. Of course my loss is not solely related to seeing Lance's earthly possesions, but those are things I can put away and deal with at a later date. It's the memories that dwell everywhere, as they are part pf my DNA now. I cannot and do not want them to go away, so it is best that I make friends with the old memories while I try to create new ones.

I began seeing a grief counselor, but I must admit it doesn't help as much as I expected and hoped it would. Now I pay someone for the priviledge of doing for an hour what I can do for free at home each night - reminice and cry. I know I have been traumatized by Lance's entire illness and eventual death, the loss of a life expected, of family, of children, and that I need to keep confronting the hurt so that it does not get bigger than me. I was really hoping that somehow the grief counseling would help me develop techniques to move through each stage of the loss, help me build momentum and come to terms, but as anyone in therapy knows, the therapist does very little talking, and since I don't have any trouble verbalizing my feelings, I'm not sure how much good it will do me. I will continue with the counseling for now, but I am still searching for a remedy to my blues.

The answer is probably just to give it time, but in the meantime, how do I fill that time? I've heard the local hospital has a bereavement group for "young widows", but I've yet to hear back from the moderator. I can't imagine the group being on hiatus during this time of year, but it's been 2 days and no call back. I've tried to get out of the house as much as possible and like to spend time with my friend Marilyn who is also a "young widow", another buddy Trina, and my friends Jennifer and Jim who have practically adopted me. I pointed out to Jen that this will be a long haul and I don't want to wear out my welcome in the first month. She told me to shut up and stop being stupid! I am so thankful for them. Jen, who is a professional concert promoter, wants to help me plan the music benefits I'd like to host in the coming spring, so perhaps after the holidays I will begin to focus more on planning those events.

I've gone out to hear live music of friends of Lance and mine, and it helps and hurts at the same time. He should be playing with them. I received in the mail last week a copy of Lance's last studio recording called Secret Life with Elliot Sharp's edgy blues band, Terrplane. Although Lance had received a rough mix from Elliot at some point, he never got to hear the final mastered version or see the complete packaged CD. The pictures from the previous post were taken the day that recording was made, and there is a picture of Lance on the back cover that is very handsome. I felt wounded upon first seeing the picture and listening to the record. It is a great record and I am sure Lance would have been very proud of it and would have probably played those songs for many, many people around the world. What a shame, what a loss for us all.

I feel bad for our cat, Jaden, as well. She's gone from living in a home where someone was always, always home, to living in a home that I can't bear to be in for too long a stretch. This weekend will be no exception. I am heading out to Long Island to spend the night at my brother's and to reconnect with his family. Being house bound for the past two years has left my realtionship with my neices and new nephew in need of repair. I 'm sure they will have questions for me about where Lance is now and how this happened. A social worker at Sloan Kettering told me that it is important to make the distinction for children between an illness like cancer, and the everyday cold. To simply tell a child that someone was sick and died could lead them to think that next time they or their mom or dad gets "sick" with a sniffle, that they will die, too.

On December 19 I will leave to go to Florida for Christmas with my family. I'll stay a week, but before I go I plan to have the funeral home transfer Lance's ashes into his snare drum. I picked it up from the engraver and I am very pleased with the result. The engraving says:

LANCE EDWARD CARTER

MAY 11, 1955 - NOVEMBER 1, 2006

BELOVED HUSBAND ~ SON

BROTHER ~ UNCLE ~ FRIEND

MUSICIAN

The beat goes on...

...and on, and on....

~Lisa

Piccolo Snare

2006-11-30T13:39:00.000-05:00

I've decided to hold Lance's ashes inside his piccolo snare drum. I think Lance would really like this idea. His piccolo snare is smaller than a typical snare drums with a higher tone. Lance used it as a side snare, especially while performing improvs, but also for funk gigs. The drum cracks high and loud and there was no mistaking who was making that bright sound. I'm bringing the snare to the engraver later today and she will affix a plate to the side.

Elliot Sharp sent me the pictures below of Lance recording in the studio (I think it is LoHo Studios..maybe?), and also this picture of Lance after a gig with Raw Meet (Elliot Sharp, Melvin Gibbs) at the Leipzig Jazz Festival in 2003. Lance loved that Biggie Smalls T-shirt so much, he had two!

As for me, I am keepin' on. It's a tough time of year, and things are still so fresh, but I'm not afraid to feel. When I do grieve, I feel like Lance is reaching out me and I try to turn those moments into a positive.

More soon,
~Lisa

Band of Brothers

2006-11-26T17:46:00.000-05:00

Lance's funeral on November 11 was the send off I was hoping for. Many friends and family were in attendance as were many of Lance's musician compadres. I asked some of them to play live jazz in the church, and the several who played before and after the service set the mood that Lance would've wanted. It needed to include live music - music of his church. I wish we could've found a way to have all the musicians there play, but one day soon we'll do just that. Stay tuned.

The musicians who played at the funeral were Lance's cousin and guitarist Brandon Ross (Cassandra Wilson, Meshell Ndegeocello), guitarist Elliot Sharp (Terraplane), drummer Abe Speller (Sonny Sharrock), keyboardist Benny Lackner (Maroon), bassist Derek Nievergelt (Terence Blanchard, Dianne Reeves, Diana Krall), and vocalist/bassist/poet Eric Mingus (Terraplane). Also, Nadine Goellner honored us by singing a soulfull and touching acoustic version of Amazing Grace. The live music made for a moving tribute to Lance.

My sincere thanks to his band of brothers and to Nadine for her sweet and soothing song. The service was all I had hoped it would be. I'm sure Lance was smiling.

~Lisa

More Thanks to Give

2006-11-24T09:56:00.000-05:00

I was remiss yesterday in not publicly thanking the music charities who supported Lance and I over the last 12 months by paying our mortgage, condo fees, car insurance and even for Lance's funeral. Their gifts total thousands of dollars, much more than Lance would have collected from disability benefits alone, not to mention the constant moral support their social workers gave to me during some very difficult financial times. These organizations inspire me, and I plan to work to raise money for these charities and raise awareness about their programs amongst musicians. As this is the time of year for giving, please consider making a donation in Lance's name to one of these charitable groups so that other musicians in need may benefit one day. Below the addresses I have posted an example of a thank-you letter that I sent to each organization. One group has asked me if they can use the letter as a part of their next fundraising appeal, and as this blog shows, I am absolutely willing to share Lance's story if it can help anyone learn more about amyloidosis, or inspire them to support charitable groups like these.

Much love
~Lisa

MusiCares
156 West 56th Street
#1701
New York, NY 10019

The Actors Fund
729 Seventh Ave.
10th Floor
New York, NY 10019

Jazz Foundation of America
322 West 48th Street
3rd Floor
New York, NY 10036

Musicians Foundation
875 Sixth Avenue
Suite 2303
New York, NY 10001

Sweet Relief Musicians Fund
65 South Grand Ave.
Pasadena, CA 911054

October 10, 2006

Ms. Dee Dee Aquisto
Director, Health & Human Services
MusiCares
156 West 56th Street
#1701
New York, NY 10019

Dear Dee Dee,

It is with deep appreciation that my husband, Lance Carter, and I send this letter of gratitude for the financial assistance that MusiCares has offered during Lance's illness. I also must take this opportunity to once again thank you personally for taking our case to the other organizations in your consortium, and serving as our case manager with the various groups. The time you saved me in preparing and distributing our documents was time I was able to give to my husband as his caregiver.

The assistance you provided has had a profound effect on my husband' spirits. Being unable to work and help out with our expenses since May of 2005 has been the source of stress and anxiety for Lance. Receiving the generous contributions from MusiCares in the form of mortgage and condo fee payments and auto insurance assistance during 2006, lifted a weight from him and enabled him to relax some. He worries about me and how I will manage, with all of the extra tasks I've taken on to manage the household since the onset of his illness. The support you sent on our behalf has comforted him so much, and he and I both worry less and are able to focus on positive things during the limited time we have together.

In the past year that Lance has been seriously ill and disabled, he has spent many hours contemplating his life and looking back on his accomplishments and collaborations. His illness has helped him reconnect with musicians from his past, and the visits and messages he receives from the various orbits of his life have been touching. Though it's been a long while since he could play his drums, Lance remembers that he has lived the sometimes charmed life of a successful musician. He recognizes that he has traveled places and seen things many would only dream to know. Receiving assistance from MusiCares only reinforces to him that his identity as a musician is still intact and that he still is a vibrant member of the musicians' community. This is invaluable to him, and it validates all that he feels about his place and purpose on this earth. It says to him that he has made contributions to the world in the form of his music, and for that, the music community has not forgotten him. It's a cliche to say that his music will live on beyond him, but there really is incredible comfort in that notion, and I know that Lance senses that he is blessed to have that legacy.

If Lance or I can ever be of assistance to your organization, please do not hesitate to ask. Working for a non-profit arts organization myself, I understand that an organization such as yours has many ongoing needs, and if ever you feel Lance or I can help you with your mission, we would be honored to help.

With deep respect and gratitude,

Lance Carter
and
Lisa Cooney

Second First

2006-11-23T21:21:00.000-05:00

Thanksgiving 2006

What to write today...?

I am thankful for every single person who reads this blog, who cares enough to check it, whether you know Lance or I personally, or just heard...

I am so, so thankful for Dr. Comenzo, whose gave Lance a piece of his large heart to use for another six months, so he could be by my side. I'm thankful for Nurse Practioners Lauren, Zulay and Lorraine who sweated it out with me all the weeks at Sloan, giving me a few extra sincere moments and always their ears.

I am thankful for all of the members of the Amyloid ListServ who taught me about the disease, who gave me real hope we could beat it, and who prepared me for the battle. They have cried many real tears over AMY as well.

I'm thankful for the playful spirit of Leslie and Nancy who came to the house twice a week to draw blood from Lance. They would STAT the order even when they weren't supposed to. They liked Lance very much.

I am thankful to have my husband's family, always to be my family, who surrounds me with love and who feels the heartache in the same way I do. Ruthie, Karen, Beth, Corey, Jimmy, Bryce, Bailey, Brayden, Brandon, Kevin, and all Ransom, Summers and the rest, I love you. I am deeply thankful for Ruthie who would sit with Lance all the days I went to work, so that he could feel the comfort of his mother through the hardest of times and longest of days, and that she could be there with him the night he left this earth. This is a real blessing, to have your mother by your side at that time.

I am thankful for my family, for being my rock and never letting us feel that we were adrift in the ocean, floating without a life raft. You always kept us in your sights.

I am thankful for my job and friends at Paper Mill Playhouse, who filled the void duirng my many absences and never questioned where I needed to be and when; who donated sick days to me; who made a contribution to the research fund and who continue show me great kindness. I am so thankful to have my job to slip back into, relatively unspoiled by the sadness of the past year. Nothing happening there comes close to a life or death matter, but the work is passionate and the rewards are many.

I am most thankful to be Lance's wife, even now at a time of sadness, for through this cloudy prism, many gestures of respect and condolances have come my way, and I am still amazed at the wide net Lance cast out into life. He was loved. I feel loved, too. Thank you.

~Lisa

AMY in the news

2006-11-22T08:41:00.000-05:00

Last night Fox News in NY did a feature on Amyloidosis and an interview with Dr. Comenzo, Lance's physican from Sloan Kettering. The disease was the topic of an episode of the Fox medical series "House" a few months ago, and so Fox was profiling one of the rare diseases featured on the show. Lance and I missed the original airing of the House episode, but we did sit to watch it when it was re-aired a few weeks later. It was heavy. Lance fell asleep a few minutes into the show and I never woke him up. He didn't need to see and hear the hard truths shared in that episode. I could barely make it through myself. Truth is, we really didn't need to see a docu-drama, we were living it. But like a car wreck, I couldn't help but watch it.

Unlike the patient profiled in the news feature who has kidney involvement and is doing pretty well, it was Lance's heart that ultimately stiffened with amyloid and took him from us. I was hoping that the love in his heart would crowd out the amyloid, and the sheer determined stubborness that Lance possessed would fight the hardening and keep his heart walls loose enough to pump, but once again AMY won. It will be a few more months before Dr. Comenzo will have Lance's autopsy report to share with me, and we will learn the real extent of the amyloid deposition throughout his body. We suspect it was extensive and involving many organs and systems. This is important information for the purposes of research, and I am hopeful that Lance's tissue donations will help lead researchers to some answers.

~Lisa

Ashes

2006-11-19T22:02:00.000-05:00

I brought home Lance's ashes from the funeral home Friday night. I got the call that they were ready and I left work a bit early to pick him up. I was by myself because the rest of the family was not able to go. Lance's mother had a bought of vertigo which happens to her occasionally, and his sister Karen works late. So I went by myself and it was very quick, but still, it's an emotional thing. The box container is small, about the size of two bricks and is very heavy. I made one stop on the way home and felt very uncomfortable leaving the ashes in the car, so I made it very quick and got back to the condo. I really needed to get him settled in here at home, and I have set up an area in the living room with pictures and roses from the casket blanket I had made for the wake. For now I have his Yankee hat sitting atop the box, but soon I will start to look for the right container. When I have it, the funeral home will transfer the ashes to the vessel and that will be that.

One thing I hoped would help was receiving some second hand furniture yesterday from a friend who is moving. It helps to change the look and layout of the living room, but now that the house is looking "normal" again, I really miss healthy Lance all the more, and I seem to keep wondering where he is.

I've had a rough day today. It is my birthday, and while I did meet up with my friend Marilyn (who lost her husband Fred 6 months ago) for a drink last night, today has been very hard. I went to Lance's mother's house for dinner and cake, and couldn't really deal too well. I was OK until the cake and the birthday song, and then I lost my shit. It will be a difficult year of firsts for me, and today's birthday is the first of the firsts.

~Lisa

Class of '73

2006-11-18T12:28:00.000-05:00

It's been brought to my attention by several sources that Lance actually graduated high school with the class of 1973, NOT 1974 as was stated in his obituary and posted here. Lance would want this error corrected and is probably annoyed that we got it wrong in the first place! Sorry sweetie!

~Lisa

Human Spirit

2006-11-15T14:40:00.000-05:00

There are two videos of Lance playing drums currently available on YouTube. The first is of Lance performing with Sarah Pillow, an classical vocalist with avant garde leanings (who knew there was such a category?) who he toured with a few years back. Lance really did enjoy all forms of music, and he frequently wore his Grand Ole Opry T-shirt which he purchased while on tour with Sarah back in 2003.

But the next must-see film is of Lance's first band from back in middle school. It was called Human Spirit and the band featured Lance on drums, his cousin Brandon Ross on guitar (and overall smoothness) and friends Steve Gross on bass, Teddy Klaus on keyboards and Cary Miller as the vocalist. This 8mm film-to-video transfer video of Human Spirit was posted on YouTube last night by a friend and was shot in 1968 when Lance was in 8th grade. Lance told me they played the bar mitzvah circuit that year, performing at friends' parties and becoming little local celebrities! There is no audio with the film, but bandmates are trying to determine the song the band is playing from the footage. One theory submitted by Cary Miller who can be seen funkin' it up in the opening sequence narrowed the music selection to two musical arrangements: "Keep Me Hangin' On" and "Light my Fire"! Very funny! Thank goodness for technology! Lance would be SCREAMING with pleasure right now!

Enjoy,
~Lisa

Memo
Subject: Human Spirit Video
To: Director of Historical Internet Music Video Analysis
From: Internet Video Music Archives Research Division
Video File: http://www.youtube.com/watch?v=xFQl6vGWaaA

Director, we have taken the liberty to analyze the "Human Spirit" video you sent us for content and historical relevance.

As you know, there is no audio track to the video so we had to rely on the current surveillance tools in our system as well as the hundreds of man hours and resources we devoted to the project to painstakingly and effectively study and scrutinize the video to develop a hypothesis.
After a complete spectral analysis on a pixel by pixel basis and matching the images against our recently updated face recognition software, discography, and historical records of all known play lists of the band crossed referenced against oral histories, other anecdotal input and conjecture, we offer the following hypothesis:

The Video opens with images of Cary Miller doing a rather poorly executed imitation of James Brown. James Brown, a well know singer of the era, known as the "God Father of Soul" was know for his dancing, onstage theatrics and periods of wife beating.

For the aforementioned video, our music analysis and video examination of the microphone hand moves and dance steps seems to point to the song, "I Feel Good."

After considerable examination of the drum head logo we conclude this logo is genuine and very much in the style exhibited during the era the band was in existence. The actual artist has not yet been determined but we are still searching the oral histories and will soon be able to provide you with some plausible conclusions.

There also seems to be a "black light" fluorescent tube in front of the drum head which would make it glow. The band Human Spirit was known to have been associated with a light show company during this era of its existence.

Our face recognition software easily identified the musicians in order of appearance as: Lance Carter as the percussionist, Steve Gross on the bass, Brandon Ross on an electric Gibson guitar (quite possibly a Melody Maker) and Theodore J. Klaus on what appears to be a Farfisa Organ.

We also believe we have determined what song is being played in the video. We carefully analyzed on a pixel by pixel basis the hand and finger positions on the guitar and base guitar. We then extrapolated the drum beats on a beat per measure basis in relationship to cymbal crashes that are shown in the video. We then cross referenced this data to all known play lists by the band and narrowed the music selection to two musical arrangements: "Keep me Hangin' On" and "Light my Fire"

A confidential source has suggested to us that this is indeed the "Lost Human Spirit Film" of Light my fire. We cannot confirm this at this point in time.

However, we at the Internet Video Music Archives Research Division tend to believe this is indeed a film of Human Spirit performing "Keep me Hangin' On" a cover song in the style of the Vanilla Fudge.

Here is what the song sounded like as performed by the Vanilla Fudge.

Director, please review our findings and if you have any questions please feel free to contract our department at any time.

T.H.E. Rock
Living and Lurking in LA

The Highland Park Experience

2006-11-13T21:35:00.000-05:00

I posted the message below on the Highland Park HS (NJ) news group webpage as a way to say thank you to the many, many old high school friends of Lance's that have reached out to me to share memories of Lance and express their shock and grief at his passing. Highland Park is a wonderful place to grow up and Lance had a what can only be described as an awesome high school experience. He graduated in the class of 1973. Groovy!

Dear Highland Parkers,

What can I say to the people who gave my husband, Lance Carter, the best gift possible, one he carried with him like a prize never to be taken away, one he touted to strangers around the world? You all gave him an adolescence full of wonderful, positive memories, rollickin' good times, musical inspiration, color-blind friendship, loyalty and lasting affection. He loved, loved, loved Highland Park. He loved, loved, loved all his high school memories. He knew how lucky he was to be brought to HP by his family while in middle school, and he knew his future would have been very different had they not. He would tell me that when we had kids he wanted to move back there, but that was not meant to be part of our story. He talked a lot about Human Spirit (I tried to have it mentioned in his obit as his first band, but his mom didn't think it was too proper-oh well...). His mom lived there until 2 years ago and during our courtship he would drive me around town and point out the places and homes where he did just about anything and everything for the first time! Half of you were probably there for those firsts...and seconds...and hundreds of times he managed to make having fun his priority. From what he told me (and his mother confirms) it was amazing he managed to actually graduate, being that school seriously interrupted his social and sleeping schedule!

It was a pleasure to meet some HPers at his wake and funeral, and as always it was a pleasure talking to Andy Bernstein, an old Teen Arts friend of mine, who along with the Rubel family, were people Lance and I had in common despite knowing them through completely different orbits. Andy, please send that Moonshine photo to me. It sounds like a must-have.

As for me I am breathing...slowly...as it all starts to sink in. His sudden illness, the rapid and merciless theft of his mobility and ability to make music, his passing and my deep feelings of loss. As the hospital bed and oxygen tanks and breathing machines and the walker and motor scooter gradually get picked up and leave our home, and the images in my mind of Lance being so ill begin to fade out and are replaced by the images of him healthy and vital, I miss him all the more and feel the grief in a deeper way than during his terminal illness. The comfort of feeling that he is at peace now does not console me in the way it did in the days just after he passed, and the lump rises a little higher in my throat each day. Reality is setting in and it is not too pretty, but I know it is natural, and part of the grieving process. But if anybody has a time machine handy and can push me forward by a few years, I’d be ever so grateful...

I hoped to believe that we could manage his disability indefinitely if God let us. Although we knew the disease would take him quickly (14-24 months expectancy - he survived 18 months), as each day passed he was still here, and he was still Lance, still a pistol, still sharp, still grooving in his own way. There was never a tomorrow that I felt would be the day he would leave us. So we'd be that family with the souped up wheelchair and the maxed out van, I thought. I am a coordinator by trade, so I could manage the logistics easily, I thought. Maybe that was selfish of me to want to keep him here in that condition, for Lance had lost so much, but he smiled at me everyday, told me loved me constantly and made me laugh as he would dance in his seat, popping is shoulders up and down when listening to music on his iPod, or just diggin' a catchy jingle from a TV commercial. He was not miserable, even as he grew weaker, even as he lost the ability to hold objects or grasp my hand tightly. The past year has made me braver than I had imagined I could ever be. But my bravery pales I comparison to Lance’s.

I believe he had come to terms with the inevitable because of our relationship, the love of his family, the experiences he had with you folks in HP, and his successful music career. I believe he felt our marriage was the icing on the cake of a blessed life full of good times, good family, good friends, globetrotting travel, great music, and many, many parties…and if God let him do it all again, even with the same ending, he would take it because it was all good. He really had few regrets.

In closing I say to you, do not waste a day. Lance never worked a day in his life because he was doing what he loved. Playing the drums professionally was never a job for him, it was a priviledge…and a party. Party on, baby!

Much love and everlasting respect,
~Lisa Cooney Carter

Star Ledger Obituary

2006-11-11T08:15:00.000-05:00

Below is a special obituary written exclusively by the Star Ledger, New Jersey's largest and "most serious" newspaper. Lance would have loved this! A good review in the Ledger! Go baby!

LANCE CARTER, 51, VERSITILE DRUMMER

Saturday, November 11, 2006
by Guy Sterling, Star-Ledger Staff

Lance Carter loved music so much that, rather than concentrating on a single style of drumming, he mastered as many as he could. Over time, he grew equally adept playing rock, jazz or blues, fellow musicians said.

In the process, Mr. Carter often found himself on the cutting edge of popular music. He also developed a reputation as one of the most versatile drummers around.

"All that versatility allowed Lance to be extremely creative and made him so great," said Brandon Ross, a guitarist, band leader, producer and a first cousin of Mr. Carter. "I'd rate him very high as a drummer."

After a lengthy illness that forced him at one point to play with braces on his wrists, Mr. Carter died of a bone marrow disorder at Memorial Sloan-Kettering Cancer Center in New York on Nov. 1. He was 51 and lived in Woodbridge.

Mr. Carter was born in New Brunswick on May 11, 1955. Ross said he remembered his cousin banging on pots and pans in their grandmother's home when they were boys. The two also got early musical training as members of the Christ Church choir in New Brunswick.

Mr. Carter played drums in the band at Highland Park High School, where he graduated in 1973. He also studied drums at Berklee College of Music in Boston. When he returned to New Jersey in 1976, Mr. Carter kicked off his career playing in dance bands.

But it wasn't long before his talent was recognized in New York and he began performing and recording with some big names, including pianist Junior Mance, singers Cassandra Wilson and Joan Osborne, and avant-garde guitarist Sonny Sharrock.

One of the CDs that Mr. Carter played on was Wilson's 1993 Grammy-nominated recording, "Blue Light 'Til Dawn." He also recorded with Sharrock and played with him on the soundtrack of the Cartoon Network show "Space Ghost: Coast to Coast." Sharrock died in 1994.

Mr. Carter met his wife, Lisa Cooney Carter, at a Sharrock show in New York in 1993. His showmanship instantly set him apart, she recalled. "My husband was a physical drummer," Mrs. Carter said. "He was quite a spectacle when he played."

The last time Mr. Carter played live was in 2005 while touring Europe with Elliott Sharp's Terraplane. Some of the other bands he played with over the years were Maroon, Red House, The Mad Daddys, Lunar Bear Ensemble, Pulse and Network.

Guitarist, producer and engineer Bob Musso said Mr. Carter specialized in "a big beat sound," not unlike that of Led Zeppelin drummer John Bonham. Not surprisingly, Led Zeppelin was a favorite of Mr. Carter's in his formative years.

"One of the things Lance really wanted to do was be in a classic rock trio or quartet, like Led Zeppelin, Cream or The Who," Ross said.

Mrs. Carter said her husband had a "divided" career, one that found him playing original music in New York and cover and jam bands in New Jersey. While the New Jersey gigs helped pay the bills, his heart really was in improvising and experimenting on the original music scene, she said.

Services will be held 11 a.m. today at Christ Church, 5 Paterson St. Mr. Carter will be cremated.
In addition to his wife, Mr. Carter is survived by his mother, Ruth Ransom Phifer of Perth Amboy, and two sisters, Karen R. Carter of Perth Amboy and Beth DeSantis of Baldwin, N.Y.
Donations in his name can be made to the Amyloidosis Research Fund, care of Dr. Raymond Comenzo at the Memorial Sloan-Kettering Cancer Center, 1275 York Ave., H-802, New York, N.Y. 10021.

Another Typo

2006-11-10T08:46:00.000-05:00

The Home News Tribune has placed a correction of the dates for Lance's wake and funeral, but now they have listed the funeral service to start at 10am. THIS IS WRONG! The funeral starts at 11am at Christ Church in New Brunswick.

Once again for good measure:

Wake: Friday, November 10 from 7-9 pm
Anderson Funeral Service
201 Sandford St. (on the corner of Lee Ave. & Sandford St.)
New Brunswick, NJ 08901
732-545-7312

Funeral Service: Saturday, November 11 at 11:00 am
Christ Church Episcopal
5 Paterson St. (situated on the entire block between Church & Paterson Sts.)
New Brunswick, NJ 08901
732-545-6262

The church is located directly across the street from the New Brunswick Hyatt hotel. Park on the street or in the Church Street Parking deck directly behind the church. Parking is free on Saturdays. There are no driving directions listed on the church website, but under the "Contact Us" tab they have a link to Mapquest.

In lieu of flowers, the family request that donations be made in Lance's name to the following fund:

Amyloidosis Research Fund
c/o Dr. Raymond Comenzo
Memorial Sloan-Kettering Cancer Center
H-802
1275 York Avenue
New York, NY 10021

Obituary information is WRONG!!!

2006-11-09T09:25:00.000-05:00

Lance's obituary appears in today's Home News Tribune, but they have the WRONG dates for the wake and the funeral! I cannot phathom how this happened because we gave the funeral home the correct information, and they sent the correct dates to the paper, but somewhere, somehow, somebody dropped the ball. I am not pleased. I am told the obituary will be corrected and run again in tomorrow's paper.

The dates I have posted here are correct! Once again, just to be clear:

Wake: Friday, November 10 from 7-9 pm
Anderson Funeral Service
201 Sandford St. (on the corner of Lee Ave. & Sandford St.)
New Brunswick, NJ 08901
732-545-7312

Funeral Service: Saturday, November 11 at 11:00 am
Christ Church Episcopal
5 Paterson St. (situated on the entire block between Church & Paterson Sts.)
New Brunswick, NJ 08901
732-545-6262

The church is located directly across the street from the New Brunswick Hyatt hotel. Park on the street or in the Church Street Parking deck directly behind the church. Parking is free on Saturdays. There are no driving directions listed on the church website, but under the "Contact Us" tab they have a link to Mapquest

In lieu of flowers, the family request that donations be made in Lance's name to the following fund:

Amyloidosis Research Fund
c/o Dr. Raymond Comenzo
Memorial Sloan-Kettering Cancer Center
H-802
1275 York Avenue
New York, NY 10021

Funeral Arrangements

2006-11-07T19:14:00.000-05:00

Lance is finally home in NJ and we now have firm funeral arrangements.

Wake: Friday, November 10 from 7-9 pm
Anderson Funeral Service
201 Sandford St. (on the corner of Lee Ave. & Sandford St.)
New Brunswick, NJ 08901
732-545-7312

Funeral Service: Saturday, November 11 at 11:00 am
Christ Church Episcopal
5 Paterson St. (situated on the entire block between Church & Paterson Sts.)
New Brunswick, NJ 08901
732-545-6262

The church is located directly across the street from the New Brunswick Hyatt hotel. Park on the street or in the Church Street Parking deck directly behind the church. Parking is free on Saturdays. There are no driving directions listed on the church website, but under the "Contact Us" tab they have a link to Mapquest

In lieu of flowers, the family request that donations be made in Lance's name to the following fund:

Amyloidosis Research Fund
c/o Dr. Raymond Comenzo
Memorial Sloan-Kettering Cancer Center
H-802
1275 York Avenue
New York, NY 10021

Again, many thanks for the wonderful tributes left here for Lance. A woman from England who lost her father to Amyloidosis wrote to me, and she shared a sentiment that I thought holds true for me, too. She wrote, "Sometimes for me it feels like when the grief is shared there is less for me to carry." Thank you all for helping me carry the load.

much love,

~Lisa

Thank You

2006-11-03T12:44:00.000-05:00

I am deeply touched by the messages left here from near and far and by the volumes of calls that have come in to me and Lance's family. It makes my heart soar to know how loved he was. I am so proud to be his wife.

Many are asking what the funeral arrangements are, and we are still planning. We have decided to allow an autopsy of Lance, not because we need to know the cause of his death (a broken heart), but because Lance and I agreed that he would donate tissue samples to Sloan Ketttering to be used to research this dreadful disorder. Amyloidosis is a very rare disease, only 8 in a million will develop it, and Lance had a particularly uncommom presentation, or strain, of the disease. The way it effected his muscles and nerves is not typical for most patients with amyloidosis. Many patients have amyloid buried deep in an internal organ, as Lance did, too, but his aggressive starchy protein formed tumor-like amyloidomas throughout his torso, and samples of that tissue would serve researcher well.

So, the autopsy will take a few days to process, and apparently there is a longer process involved in bring hm home to NJ from New York state, so that will take another few days. Although no dates are confirmed yet, we are likely looking at services to be held near the end of next week. Of course, I will post specific information as soon as it is confirmed.

Some have asked about making donations in Lance's name to Sloan Kettering and that would be a lovely tribute to him. If you would like to make a donation in Lance's memory please make the check payable to Memorial Sloan-Kettering Cancer Center and in the memo line, write "Amyloidosis Research Fund". Send your check to:

Amyloidosis Research Fund
c/o Dr. Raymond Comenzo
Memorial Sloan-Kettering Cancer Center
H-802
1275 York Avenue
New York, NY 10021

Please include a letter/note specifying the donation is made the memory of Lance Carter and that the donation is to go towards "Laboratory Research in Amyloidosis". My sincere thanks in advance to those helping us with the fight by making a donation.

These select pictures are from our wedding on October 22, 2004. We celebrated our 2nd anniversary last Sunday. More photos from the wedding can be found on our photographer's website, but these few show the spirit that was Lance. God, he loved a good party!

May 11, 1955 - November 1, 2006 All Saints Day

2006-11-01T10:28:00.000-05:00

Dear family, friends, amyloid warriors and blog readers,

Lance passed away peacefully this morning 2:20 am. His mother was with him and he passed in his sleep. His large heart could go on no longer and he asked the Lord to end his suffering. He was happy up until the end, never afraid, never tearful. He left that to us.

I used to sing to him all the time, "You are my sweetheart, and this is the sweet part." I told him again last night when I returned to the Sloan Kettering at 3am to spend some time with him, and this will always be true for me. Life exists on a physical plane, but love is everywhere and cannot be burried in a box. I feel him with me now and will always. Lance loved me so totally and told me 20 times a day, even before his illness. He gave me the unconditonal love that I never expected to really exist. He was my once-in-a-lifetime brush with greatness and I will work hard to preserve his memory and do what I can to spread the word about this dreadful disease that has taken him and so many other so young.

But please remember, that Lance lived his life on full throttle at all times! He travelled the world, made wonderful music and laughed and loved a lot along the way. He didn't miss out on much! Some have said to me that heaven has a new drummer now, and he made it there just in time to play the last set. How true!

I will post more soon when we have arrangements made. We have to sort out some issues before he can come home to NJ from Sloan Kettering, and we are looking at a service to probably be held next week sometime.

Thank you for the kindness and support. I am touched by all the good will and messages and hope to thank each of you in person one day soon.

All my love,
~Lisa

Slipping

2006-10-31T17:25:00.000-05:00

Lance has been readmitted to Sloan Kettering. I took him in on Monday at the suggestion of the amyloidosis team because his blood pressure had dropped to 64/40, he refused to eat anything or drink his protein shakes and was sleeping all day and all night. His BP was lower than ever and I could see him slipping. He was very groggy when I'd wake him to drink a protein shake, and I could see he was becoming confused. We had decided last week to cancel the Thanksgiving trip to Florida as Lance was loosing strength by the day and I was fearful to be so far away from his doctor should he have a problem, and it became clear to me that our trip would never happen. The doctors confirmed for me today that Lance is now entering the end-stage of his battle with this monstrous disease which in fewer than two years has stripped him, and me, of our future together. While the chemo he endured kept his FLC in a lower range, his heart continues to stiffen, and his muscles continue to atrophy from nerve damage cause by amyloid deposits throughout his body. All told, Lance has lost 110 pounds, 60 lbs since May and 40 lbs in the last 2 months.

It also became clear to me this week that I can no longer care for Lance at home. As hard as his family and I have tried, we cannot do for him the things that he needs now. And I am loosing my bravery and ability to manage this disease at home. It's too sad and the war has too many fronts. Lance cannot walk or lie down flat so he has breakdown and open sores on his backside - the hospital bed arrived too late. His legs also need constant attention and re-dressing to prevent the giant water blisters from returning. He will not eat or drink despite my repetitive encouragement, and needs help with all hygiene, bodily functions and dressing etc. Managing the BiPAP machine and the oxygen tanks and keeping on top of all his medications have me frazzled. I try to squeeze many of the tasks in before and after going to work, but the days are not long enough. Lance's mom who tends to him during the day is also distraught at his quick worsening, but having witnessed it all for herself, agrees that Lance needs to be in a care facility. Tomorrow I meet with a case worker from Sloan to help me find an acute care facility with near our home in Woodbridge where Lance will receive the care he needs and so his family and I can be near and on the ready when he needs us. JFK Johnson Rehabilitation Hospital would be my first choice. They have excellent facilities very close to our home and Lance was already accepted in their Day Rehab program, the first appointment of which would have been on Monday. I called them to tell them we would not be coming and why and they were very supportive. I would like to try to get him into one of their three inpatient facilities. My grandmother lived at one for about 6 months and I remember it was very good. My mother also remembers it being first rate. Should a miracle occur, they offer transitions to an inpatient rehab program, and should all measures fail they have a beautiful hospice on site.

It's still a question mark if Dr. Comenzo will go forward with a course of Revlimid. It really depends on if they can stabilize and increase Lance's blood pressure while they continue to walk the tight rope between diuretics and heart failure. There are certain protocols patients must meet for certain treatments, and the protocol dictates whether or not Lance should continue with the drugs. So the decision to continue treatment is not really Lance's, mine or the doctor's. We discussed it yesterday - he would gladly coordinate chemotherapy with an outside facility should the unlikely occur and Lance bounces back as he has in the past. Dr. Comenzo confers with other doctors all the time. People come to see him from all over the country and then return home with a plan for their local physician. Dr. Comenzo came down to the Urgent Care Center and we spoke while Lance was out of the room having a CAT scan. The CAT scan was to look for possible bleeding in Lance's head brought on by cumadin, a blood-thinner Lance takes since the blood clot last May. Doctors said sometimes the vessels in the head bleed out slowly which could cause Lance's BP to lower. The team this morning did not know the results yet. Dr. Comenzo was very kind as always, and we agonized together about how horrible this disease is. I told him about the doubts I have about caring for Lance at home, and he agreed but went further. He gently told me that Lance's family and I did all we could for Lance, more than most could manage, but now our ability to care for Lance was inadequate, and if I needed an "out" to forgive myself for making this decision, I need look no further. He completely agreed with my take on the situation and backed me up. I really wasn't looking for the "out" because the past two weeks of watching Lance's decline was evidence enough that this needs to happen soon.

Later today, a doctor from the team came back to talk to me and we stepped outside into the hall. She stated the obvious, that Lance is in serious decline, and while yesterday Dr. Comenzo was leaving the possibility of continuing the chemo open, the team's opinion now seemed to be that he is probably not strong enough to tolerate the drug. The team physician talked about acknowledging the advanced and aggressive nature of his disease and making Lance comfortable. She was very sincere. I've had this same conversation three times prior with the doctors during Lance's previous hospital stays, and all three times I didn't believe in my heart that this was it, but this time, seeing what I've seen and knowing what I know having cared for Lance the past 18 months, this time they are probably right. Sometime you just know. And now I know.

Lance's mother is staying with him tonight to let me go home and get some sleep myself. Lance sleeps a lot, but it is a restless sleep and he twitches and jerks when he is really knocked out. Since he refuses to lie down he sleeps sitting on the edge of the hospital bed and we are all afraid he will fall forward. The nurses told us if he would not lie in the bed that someone needs to always be with him. If one of the family cannot sit with him, the hospital will assign someone. For now we will try to manage with the family, but hopefully we will get him settled in somewhere closer to home soon.

Please continue to pray for Lance that he has peace. Send him your vibes of love and friendship. Listen to his music and think of times you played with him or talked about music with him. Conjure up his baritone laugh, his dimpled smile and light brown eyes. The picture above is one of my favorites because he is so damn cute, and he looks so happy. That face, OOOh I could smooch it!

~Lisa

Revlimid

2006-10-19T11:43:00.000-04:00

Lance had an appointment yesterday with Dr. Comenzo. After a few rounds of the Melphalan/Dexamethasone chemo cocktail, he has determined that it is not really working like we want it to. It holds the FLC down temporarily, but within a couple weeks they begin to rise again until it is capped by the next round of chemo. So while this drug mixture is doing him no good, it still doing just enough to at least maintain the current organ functions of his heart, liver and kidneys. He's not gotten worse, but he's not gotten any better. Considering the rough summer and the setbacks, we were fine to be home a few months with the status quo. And with barely any side effects and being easy to tolerate, it good to know that we can keep the Mel/Dex cocktail in our hip pocket to use one day again when Lance's FLC is at it lowest, hopefully in the normal range. But Mel/Dex will not get us there. So, Dr. Comenzo has decided to switch Lance over another drug that came on the market this year called Revlimid. Like Emeril, he is kicking it up a notch. Let's hope it has enough BAM!

Revlimid is made by the same company that makes thalidomide and it seen as something of a thalidomide-lite. It gives similar responses with less severe side effects. Dr. Comenzo had hoped to enroll Lance in a Velcade study, a drug he is impressed with, but as predicted Lance's orthostatic BP is too low and he does not qualify. It is technically possible to administer the drug to Lance off of protocol, meaning giving it to him despite the recommendation not because of his low BP, but Dr. Comenzo did not feel we were near any kind of "last resort" scenario and feels Lance should try Revlimid which has a 50% response rate. How do like those odds? Got a coin? Anyway, the doctor hopes this will do the job to bring the FLC down to at least 50 from its latest perch of 500. I asked him why Lance could not go back on straight dexamethasone pulses which really crushed his FLC before the summer setbacks, and he told me that the high dose dexamethasone contributed to Lance's hospitalizations by allowing an infection in lungs and the pulmonary embolism that put him in the ICU back in May. Oh, right! Sometimes it all gets fuzzy! Assuming Revlimid will bring Lance's FLC down, we may be able to then pull the Mel/Dex cocktail back out of our pocket and use it to keep it the number low.

Lance was on thalidomide for a month or so when he was first diagnosed at NYU last October 11th, 2005. It made him very sleepy and pretty much out of it all the time. When we switched from NYU to Sloan Kettering Dr. Comenzo took Lance off of thalidomide and fast tracked him for the stem cell transplant. Because Revlimid is a derivative of thalidomide, it also has the high potential to cause extreme physical birth defects, so like thalidomide, one has to jump through lots of hoops to get a prescription. Because I am still of child-bearing age, the company makes us sign all kinds of legal documents saying that we acknowledge that they told us the drug can cause birth defects. We said, "Got a pen? Where do we sign?"

Despite the softening of the side effects, Revlimid is still a potent drug, and Dr. Comenzo says we should still expect some fatigue. Lance already sleeps a lot, so I cannot imagine it will be much different. There was no mention of nausea among the side effects, so that's good, but his risk of getting another pulmonary embolism is higher. At least I know what to look for now and can get Lance help much quicker before things get out of control Once all the paper work gets filed and double filed, Lance will begin the first course sometime next week. The chemo round is a 28 day cycle (like mine! ;} ), 21 days on the drug and 7 days off.

On the home front, the hospital bed and special mattress was finally approved and was delivered today. The insurance company first denied the special mattress, but then Dr. Comenzo's office sent a letter detailing the problems and need, and they reversed the decision. I also heard back from two of the music charities who said they are both interested in helping us again with some mortgage payments in 2007 , so that is another great relief. I have to check my old fortune cookie collection, because our luck seems to be picking up some.

Lance and I are celebrating our second wedding anniversary this Sunday on October 22nd. It will be a low-key, but very special day. But they're all special....!

~Lisa

Good News!

2006-10-12T17:11:00.000-04:00

We are so happy to pass along some great news! Our application for financial aid to Memorial Sloan Kettering Cancer Center has been accepted! They are waiving our current five-figure balance which we accrued during the past year, AND, they are waiving any charges we incur in the next 12 months! What a blessing! As you can imagine, this decision brings us unbelievable peace of mind. Despite the struggles of the past year, the good will of Sloan-Kettering, the music charities that have been paying our mortgage, and the countless friends and family who have bought items from the medical supply registry or sent us prayers and cards, all of you have made a real difference for us. We are deeply appreciative, and send our love, thanks and good wishes to you all.

Lance had assessment at JFK Johnson Rehabilitation Institute's Day Rehab program on Tuesday and was accepted. He goes back next Wednesday for an EMG (nerve to muscle test), and then will begin the program sometime in December. There is a wait to enter the program, but since we have plans to travel to Florida for Thanksgiving it was likely that he would not be able to start the program until we returned anyway. So we have our foot in the door and will wait for the call to start the program. In the meantime, Lance will do his part to maintain the progress he has made with his home exercises. The Day Rehab program will bring Lance to the hospital three days a week for 2-3 hours a day. One hour will be physical therapy, and the other time will be split between occupational therapy, swallowing and speech therapy and psychological & nutritional counseling.

The wheels are in motion to bring a hospital bed into our condo for Lance. It will enable us to put him in more positions to prevent further pressure sores or irritation. The hope is that as he gains more strength he will be able to sit less and give his backside a rest. I did some research on caring for bedsores, and from where I sit it seems like an uphill battle unless Lance can reposition himself occasionally. I am trying to get the same brand bed they use at Sloan Kettering (Hill-Rom), which is taking a bit longer to coordinate. Hill-Rom beds are expensive and the insurance company is taking longer than usual to get back to the Hill-Rom company. I'm not sure what this means, but our Aetna nurse case manager told me that a hospital bed is 100% covered as durable medical equipment. She did not say that the bed had to be a certain maker, so we'll see how this plays out.

Lance is still not eating well, but he has agreed to drink protein shakes that I spike with extra protein powder and calorie boosters. These seem to be helping him at least maintain his current weight. I am satisfied with this for now. You can lead a horse to water......

~Lisa

Eat! (or drink)

2006-10-06T17:31:00.000-04:00

Lance has been fairly stable, but his disappearing appetite is beginning to really concern me. He continues to loose weight, I believe from both water diuresis and poor nutrition. I have resorted to giving him high calorie and protein shakes in order to get nutrition into him. As mentioned in the last post, I had a hard time finding the Promod protein powder so instead I ended up buying Lance Beneprotein Instant Protein Powder, and Benecaloire food supplements. These are easy to find in the drugstore and, as advertised, do not alter the taste of food. I also found a shake called Kashi Energy Shake powder which when blended with milk has a whopping 30g of protein. I gave it to Lance last night, and he wasn't totally thrilled about the taste or consistency, but he understood that he had to drink it since he refused to eat solid food all day. He finished the full cup and said he did feel some burst of energy from the drink. Let's hope we found the trick! Lance is scheduled to go for a physical therapy assessment next week to begin his outpatient sessions. Maybe we'll try giving him one of these shakes before those sessions to boost energy and alertness.

We have been discussing the need to perhaps get a hospital bed for Lance. He is resisting the notion because he sees it as a setback, but the truth is he needs a motorized bed to help adjust his positioning. He has been sleeping in an electric recliner/lifter for months because he cannot get comfortable in a flat bed. He has no strength in his upper or lower body to lift himself up if he slides down the booster wedges we bought for him to use in bed. He has trouble rolling over on his own, and most importantly, he needs to be able to sleep on his sides sometimes and give his backside a rest. He is beginning to get pressure pains from sitting too much, and since he will remain seated most of the day for the foreseeable future, we need act now before his skin breaks down and develops open sores. A person with his compromised immunity needs to avoid such wounds. I have a call into the insurance company about covering the bed, and our doctor is ready to write the script if our insurance will approve it.

We go back to Dr. Comenzo on October 17 and the following day Lance will begin his fourth course of chemo. We'll find out more about the possible Velcade trial then, I hope. Lance's blood pressure currently remains lower than the study allows, but we'll see. The doctor may opt to take Lance off of the beta blocker (for an arrhythmia) in order to boost his BP, but as you can imagine, that comes with its own risks as well. Stay tuned...

~Lisa

Round Three Underway

2006-09-20T10:05:00.000-04:00

Lance's appointment with Dr. Comenzo went pretty well yesterday. He begins Round #3 of the chemo today and we expect he will tolerate the drugs as he has done for with the previous rounds. Blood test showed that the last round of chemo brought his white blood cell count to a nadir, or bottoming out. It explains why Lance has been so sleepy and why his appetite has disappeared again. He is also very susceptible to infection now, so we must isolate him from sniffling kids, and I have begun my own vitamin regimen again to avoid bringing any bugs home. Lance has lost another 10 lbs, but this time it is not all water. Lance's nutrition has been poor and it is a constant battle to get him to eat anything at all. This is a classic side effect of melphalan, the hard core drug that is trying to kill his polluted bone marrow. Even the dexamthasone steroid he takes with the melphalan, which typically boosts the appetite, is not enough to overrule the melphalan this time. Lance has now lost 100 lbs since his highest weight prior to the onset of amyloidosis. It is possible, though, that some of the weight loss is a result of shrinking amyloid deposits in his body. Some of the bulges on his back seem smaller to me, but I could be fooling myself. Who knows!? Lance is definitely less stiff, which indicates a reduction in amyloid, but he is close to being at his "dry" weight, which also makes him more flexible. While he is still carrying excess water, it is primarily in his lower legs and feet, but even there it is not as bad as before. The reduction in water has enabled Lance to make some positive strides with his physical therapy now that he has less weight to drag along as he attempts to walk more. Lance's leg wounds are almost entirely healed now, but we still keep his shins wrapped with ace bandages to prevent the blisters from returning.

I was afraid that Dr. Comenzo was going to suggest a feeding tube for Lance to boost his nutrition, but thankfully he instead opted to prescribe Lance a protein supplement powder called Promod which gets sprinkled into other foods he eats like yogurt or Carnation Instant Breakfast mixes. It will double his protein intake and hopefully help keep his energy and blood pressure up. Promod is hard to find, but my mom found it available at an online Canadian Pharmacy which I will order today. Lance's BP is still holding steady in the low 80's, and we need to get him up to the 90's to qualify him for the next more potent drug called Velcade. To do this, Dr. Comenzo is thinking about stopping the beta blocker Lance is taking for a slight arrhythmia. He is on a very, very low dose (6.25mg/day), but apparently that is still enough to suppress Lance's BP. Dr. Comenzo thinks that taking Lance off of even this low dose will improve the BP to a level that will qualify him for the Velcade clinical trial. There are six spots to fill and we are hoping for one of them. Dr. Comenzo says that he is impressed with the results he has seen from Velcade and being in the study will mean the drugs are free which should make the insurance company happy since the drug is very expensive. The doctor was pleased with all of the Lance's recent numbers, including the FLC which has come down into the 300's (from 525) after the last chemo round. The goal is to get the FLC below 100 and to hold it there. If we can accomplish that, Lance may begin to see long-term quality of life improvements.

Lance has graduated from the at-home physical therapy sessions he has had since his discharge from the hospital in July. The PT was very rudimentary and focuses mainly on getting people out of bed. Lance sped through most of the exercises and has nothing more to gain from this level of rehab. Next we hope enroll him in the Day Rehab program at JFK Rehabilitation Hospital which is very close to where we live. I believe it is this next program that will really take Lance to the next level. I will need to make arrangements to get him there and home, but we will work it out, even if I have to "work from a laptop" for the time he is in his sessions.

At the appointment yesterday Dr. Comenzo gave us the green light to travel to Florida for Thanksgiving. We've been trying to make this trip for months now, but Lance's setbacks over the summer kept pushing our plans back. Heck, for a while there the news was so bad that we weren't sure we'd even be able to go to Florida together again, so what's a little waiting now! We have reservations on the AutoTrain, which we take all the time, and it should go very smoothly. The accommodations in the handicap bedroom are perfect for Lance, and I will be in the next cabin over once bedtime comes. Once we get to my parents in Sarasota, we will relax and hope the hurricanes stay away!

Finally, last night we missed an episode of one of our favorite shows, HOUSE on Fox (yuck-Fox), which featured the disease amyloidosis. The amyloid ListServ email list I am a member of was burning up last night with many people complaining about the portrayal of the disease. The dying patient in this episode had AA (secondary) amyloidosis which is markedly different from AL (primary) amyloidosis that Lance has, and is actually much more treatable. Last night's episode was more about assisted suicide than amyloidosis, but even so, with the AA (or secondary) kind, coming to the point of contemplating assisted suicide is a stretch. The real killer is the AL (primary) kind, and coming to terms with death in this manner would have been much more understandable response from an AL patient, than an AA patient. AL is systemic and originates in the bone marrow. AA is a reactionary disorder that occurs in people with other medical problems. With AA, once the underlying health issue is cured or treated, the amyloid production stops. For example, some people with rhuematoid arthritis develop AA amyloidosis. Once the RA is brought under control, the amyloid production stops and the involved organs or tissues improve. Despite the dramatic license taken by the episodes' writers, it still is important that amyloidosis gets some name recognition and this development is very exciting. If you want to catch the episode it will be re-aired on the USA network on September 29 at 10pm.

So we continue to cruise forward, and other than the lack of appetite, Lance is very stable and in much better shape than he was over the summer. Many, many thanks to all of you who have helped us recently to afford some of the regular medical supplies we need. We set up a registry of medical supplies for our families to access (similar to a wedding registry). Your help has been a blessing and it makes Lance and feel loved and connected to you all, even those so far away. With your generosity, and that of the charities that are paying our mortgage through January, and the likelihood that Sloan Kettering will approve our application to waive the outstanding hospital bill, we are able to relax a bit more where finances are concerned. It is nice to have one less thing to sweat over, if only even in the short term.

Best regards to all,
~Lisa

Sing It To Me Anyway

2006-09-06T20:14:00.000-04:00

Lance has been doing pretty good lately. He is not running laps, but he is stronger in his legs. Finally, the diuretics have kicked in again and are working better than ever. Lance has lost another 10 lbs. of fluid making it a total of 40 lbs since his bout with the pulmonary embol;ism and congestive heart failure back in May. As a result he is more flexible and can move his legs with greater ease. He is not carrying around as much excess fluid and can once again pick up his feet when he walks instead of the shuffle that became so familiar. The shuffle was dangerous, however, and the few times Lance has fallen were because of the trouble he had picking up his feet, or because of poor balance from being so bottom heavy from the fluid pooling in his legs and feet. But now, it is also easier for him to transfer to his scooter and to get his legs into the van with less assistance. He still has great trouble using his hands and fingers to hold things, and he has a real tough time picking things up off the table. It will take longer to rehab his hands.

The big water blisters on Lance's shins are just about healed, but the skin is new and fragile, so we must keep his legs wrapped in ace bandages to keep fluid from travelling there and bursting them open again. I told him that the way his legs are wrapped reminds me of a thoroughbread race horse with the ankles taped up. He didn't see the humor!

Nadine Goellner and her partner Sarah came over one day, as did Arne Wendt. Lance appeared on Nadine's last studio recording Sing It To Me Anyway (which is a must have, I must say), and Arne played keyboards with Lance in the soul cover band Red House. Arne plans to come back over and jam with Lance on the HandSonic electric percussion pad. It will be great for Lance to make music again, even if only for a few ears!

Nadine has a new live record coming out and gave us a copy. Everybody needs to rush to her website and buy it and go out and see her when she comes by your way! Much of the music playing in the background of the website are songs from the record Lance played on, but if you scroll to the third or fourth song there is one solo acoustic tune called "What If..." which is the song Nadine performed at our wedding. After listening to the lyrics again, as with "Home", they have a much deeper meaning now. I suppose all wedding songs have an element that foreshadows the love, strength and commitment it takes to make a marriage, but still, it hit so close to home! Nadine is a really wonderful live performer, and if you can catch a gig when she has a full band it is even more of a treat. Nadine also volunteers for a great organization called Musicians on Call, a group of musicians who visit and play at the bedside of patients in NYC and Philly hospitals. The group has visited Sloan Kettering, but not when Lance was an in-patient (damned transit strike!).

Lance goes back to see Dr. Comenzo on Sept 19 and he will begin the third round of chemo the next day, unless the doctor has other ideas. Lance is stronger, and that is the pre-requisite to move onto a more aggressive and long-lasting drug. I am anxious to see how the last round of chemo effected his FLC ratio. It was bumping around for a while and I am worried that the drug cocktail of Mel-Dex does not keep the number down past two weeks or so. I am curious to see if Lance has graduated on to the next class of drugs.

In the meantime, Lance is happy that the baseball playoffs will likely include the Yankees. He is also stoked for the start of football season and we are hoping to make it to a few games at his old high school where his cousin, Jules, is playing in his senior year. Jules is hoping for a football scholarship and is getting ready to visit schools. We have to go and give our support to the BMOC (that Big Man On Campus for you squares)!!

~Lisa

PS - one last thing - if you haven't seen the Spike Lee documentary on Katrina on HBO, watch it. Order it On Demand if you can. They say we need to always be reminded of the horror of 9/11, true. But I say we also should never forget suffering that that disaster brought to people. Some was brought by nature and the rest was brought by human failure.

Round Two and All is Well

2006-08-25T22:51:00.000-04:00

Sorry for being AWOL so long. I've been hearing about it from every corner, and I am glad to finally report that no news is good news! We have had a positive two weeks. Lance is stronger and his attitude is excellent. He feels better and and has recommitted to his recovery. He is able to come off the BiPAP machine for long chunks of the day and can even sit for hours without any additional oxygen at all. This was unthinkable even a month ago. It means we can venture out of the house again without dragging along the BiPAP machine and all its accessories. Lance still must use the BiPAP machine at night, but he doesn't mind at all. It seems as soon as he puts on the mask, it lulls him to sleep. I understand from many CPAP users with sleep apnea that once you get used to the machine, you actually sleep much sounder and have a more restful sleep. That is definitely happening with Lance and the BiPAP. He has told me that he is dreaming again. He did not dream for months because of the sedatives he was on. Now Lance is off the sedatives and on the BiPAP, and he is once again having vivid dreams.

The water blister wounds on Lance's legs are healing nicely. They are still huge, but there are no signs of infection and each day the new skin grafts nicely. Our families have been helping us out buying some of the disposable medical supplies that we fly through daily (thank you!). I hate to say it, but it's amazing how much garbage we generate. I take out a bag full of trash everyday - and we are just two people. Recently all the dressing bandages have been contributing to the overflow of trash, but in general, since Lance's stem cell transplant, we use a lot of disposable paper products. It's mainly a germ thing. As they say in the BP commercials, we leave a 'large carbon footprint on the planet'. The tree-hugger in me is disappointed, but the anarchist in me say, "Oh well, too bad, so sad." Once I cure cancer, I will figure out the global warming thing. I hate to sound so glib, but....it's another conundrum.

Lance finished his second course of chemo on Saturday, again with no complications or side effects. If anything, the steroids give him a bump in energy. He will likely crash a bit by Monday or Tuesday, but that should not last more than a day or so. Dr. Comenzo bumped up his doses this time because Lance's FLC rose to 500+ between doses. After the first round last month, the FLC initially came down to around 135, but three weeks later the test came back in the 500's. Dr. Comenzo is not sure why, but he had some wiggle room to raise the doses this time and has elected to do so. We know Lance is sensitive to these drugs, so it seem perhaps it a matter of getting the dosage and the scheduling of rounds more precise. Maybe Lance will need a round every three weeks instead of four? In any case this is an adjustment period, and Lance is feeling better, so it appears we are on the right track again. Dr. Comenzo did not seem at all concerned about the FLC spike, so I have elected not to freak out at present. There is plenty of time for that later! We go back to MSKCC on Thursday 9/1 for bloodwork and for Lance to receive an injection of Aranesp that will boost his red blood cell production. He gets this injection while on chemo.

My weekend at Long Beach Island was excellent. I reconnected with old friends and went boating and breathed the sea air. I also discovered Red Bull and vodka. Very nice.

It was at times bittersweet because my last time there was with Lance, and I thought about him constantly, hoping that one day soon he could do things like with me again. Maybe by next summer Lance's immunity will be stronger and he will be up and around more, and we can plan a week away at the shore. It appears that most of the homes on LBI are on pilings and have lots of steps. Traveling with a person who has mobility issues requires a lot of planning, and the options are limited, but I did find some homes that have elevators and are near the handicap entrance to the beach that would serve us very nicely.

Lance's sister Beth stayed over with Lance while I was gone. Everything went pretty smooth, and Beth really enjoys spending time with Lance. Having three kids at home, she also managed to get a good night's sleep while staying here! I really appreciate that she did this to allow me to get a way for a quick weekend. It means a lot to have Lance's family around, helping us in so many ways. Thank you, Beth!

Yesterday Lance and I went to a big BBQ given by Lance's cousin's family. They also had an outdoor fish fry going on, which was awesome. Lance deviated form his diet and had himself some fried fish with hot sauce and homemade potato salad! We brought home some more fish and ribs, and Lance is beside himself with what to eat next. The steroids really increase his appetite, so for the first time in a long time his mouth is watering! I love seeing my old chow hound return, even if only for a couple of days! From the way Lance talks about them, you would think that ribs hold the meaning to life! All I am saying, is ribs should make us all so happy!

~Lisa

Coasting

2006-08-14T13:18:00.000-04:00

Lance's last appointment with Dr. Comenzo was positive. He is pleased with Lance's rebound from the CO2 spike and at how well Lance managed the last round of chemo. He made some minor adjustments to Lance's medication in an effort to keep his blood pressure up and it seems to be working OK. For the past few days Lance's BP has been in the low 80's, which believe it or not, is good for him. It had been hovering in the mid 70's for a few weeks and as a result I had to constantly hold the diuretic medication. This became a problem, because in the meantime, Lance developed these huge water blisters on his legs, which is one way his body is telling us that he has too much fluid on board. With the adjustment to some meds I can at least give Lance the mild diuretics which, while not taking a lot of water off, at least keep his current fluid level form increasing.

Caring for the water blisters have become a real challenge, but Dr. Comenzo gave me some great advice and I have been able to keep them from refilling after being drained by wrapping tight ACE bandages around the area. Now the trick is to heal the blistered areas on his shins, which are the size of a large grapefruits. As the blisters dry up and the skin falls of the top of the blisters, the exposed area is large and raw, and very sensitive. Since Lance's immunity has been compromised again by the chemo, it is a continual effort to keep the dressings on his legs clean and dry. Even thought the blisters are not reforming, the area is still seeping fluid, and so I found that wrapping paper towels around Lance's shins does a good job at absorbing the fluid and protecting the area. I also must use antibiotic ointment, wound recovery gel, compress sponges and adaptic mesh squares on the sores so that the dressing do not stick to to the open wound. Dr. Comenzo said it could take a few months for the blisters to heal completely.

Lance's physical therapy is coming along. He is a stronger in his legs and can stand up from a seated position with less assistance than before. Each time Lance has been hospitalized, the progress he made from his past physical therapy backslides and we have to start all over again. Lance has been doing his exercises and is getting stronger, although slowly. He also uses a respitory spirometer, which is a device that you blow that has a small ball inside it. The trick is to keep the ball in the air by the force of your exhalation. As time goes on Lance should be able to keep the ball suspended for a few seconds. The spirometer allows Lance to exercise his lungs, and it will help him improve the quality of his exhalations, the problem that gave rise to the CO2 spike last month. Lance is still using his faithful BiPAP breathing machine upwards of 18 hours a day, but yesterday he sat for almost an hour with no oxygen at all, not even the low flow nasal cannula. He could have stayed off the oxygen longer, but we decided not to push our luck! This is something Lance could not have done a few weeks ago, and it is a positive sign. Lance was very pleased that he was able to do this, and he had no anxiety about it at all. Of course, the oxygen was an arm's reach away, which is comforting, but still, for the past few months he was unable and unwilling to try breathing on his own.

Lance will start his second round of Melphalan-Dexamethasone chemo on August 23. So far, so good. I read an interesting tidbit about melphalan yesterday. Apparently it was an active ingredient in mustard gas made during World War I, and now it is the number one chemotherapy drug used in the treatment of amyloidosis! Pretty amazing! Thalidomide is also an often used chemo drug for this disease. This amyloidosis is one tough nut to crack!

We go back to see Dr. Comenzo on August 22, and this time we will take Lance in the van. We used up our last ambulance trip, and I think we will manage fine. As for me I am planning a short get-away next weekend to the Jersey Shore. I need time to recharge my batteries before the fall comes and my job goes back to full throttle insanity! Although I love caring for and being with Lance, I must admit that being the primary time caregiver and working full time is more than I can chew at once sometimes, but thankfully Lance's awesome family is always there to share the load if it gets too heavy. Lance's sister Beth will come to stay with him on Saturday and Sunday night. If you are looking for me, you can find me spouting drunken nonsense on Long Beach Island. Make it a double!!!

~Lisa

Small Steps

2006-08-06T12:40:00.000-04:00

The power has stayed on since that last time and we are once again on cruise control. Lance is doing pretty good, considering he is married to his BiPAP breathing machine. He has lengthened his time off the BiPAP to 3-4 hours at a time. He still wears his mask anytime he sleeps and throughout the night, but he can come off for longer spans during the day.

Lance's CO2 level has come down very nicely - lower than the team of doctors thought it would when Lance was released from the hospital 2 weeks ago. When Lance was last admitted his CO2 level was at 55% - more CO2 than oxygen! The doctors told me this number was "incompatible with life". In lieu of being ventilated, Lance was put on the BiPAP machine and over the next week his CO2 dropped to 42%, better than 55%, but not low enough to avoid needing the BiPAP at home. One of the doctors told me that because of Lance's advanced disease it may be that 42% is as good as it gets for Lance, but at least the machine would keep him stable. However, since using the machine at home 18-20 hours a day, his latest CO2 level from August 3 is 35%. So the BiPAP machine is still working and will be a part of Lance's picture for a while.

One problem that cannot be corrected quickly is the atrophy of Lance's diaphragm. They do not know if it is direct amyloid infiltration, or yet another muscle that has succumbed to the polyneuropathy, or deadening of the nerves, created by amyloid deposits in his body, but Lance's diaphragm is very, very weak. It is one reason he was not exchanging the gases in his lungs efficiently, and contributed to the CO2 spike. It has also effected his voice which is mainly a whisper now. Those of you that can recall Lance's beautiful baritone speaking voice will find that hard to imagine. This and his enlarged tongue make it harder for him to talk on the phone. We will hopefully keep the CO2 level from spiking in the future by using the BiPAP, managing his excess water and committing to a strengthening program. We have taken a more delicate approach to the diuretics and are trying to take the fluid off in smaller, but consistent quantities. We don't want to shock the system again with too rapid a fluid loss. This also contributed to Lance's recent woes.

Also improved is Lance's GI tract, which is effected by amyloid. Because of this, things move very slowly for Lance, and as a result he had developed a distended bowel. He is already on every imaginable laxative, so he is actually pretty regular, but he had ton of air in his upper bowels and for a month his stomach was rock solid and looked like he had swallowed a basketball. CT scans showed it to be just air, but with no obstructions. Although not immediately life threatening, it caused Lance to have a feeling of fullness and he had lost his appetite. He hadn't eaten in a few days by the time he was admitted to the hospital for the CO2 problem. Once there, the doctors wanted to put a tube down Lance's throat to allow the air to escape. Lance had that done once before and refused it. Dr. Comenzo suggested adding Gas-X to the mix of laxatives, and it has really done the trick. Lance is more comfortable, his stomach is a quarter the size it was, and he can eat again. We will keep Gas-X in the rotation indefinitely.

All of the treatments described above are really making it possible for Lance to continue on his road to remission and keep up the chemo to arrest the amyloid disease. Everything hinges on that. In theory, if the chemo works, all of the organ functions that are effected by amyloid infiltration can improve once the amyloid production is stopped. We must continue to stabilize the symptoms of the organ failure as they begin to show up and hope that Lance tolerates the chemo as well as he did last week.

Lance's first round of melphalan and dexamethasone last week was uneventful, thankfully. He had no nausea, no anxiety from the steroids...no problems at all. He took the drugs for four days, and a week later we went back to MSKCC for another quick appointment with the doctor covering for Dr. Comenzo who is on vacation. We found out that Lance's FLC came down to 135 from 350 after just one week of chemo! If this continues and Lance can eat more protein and get himself stronger, he can graduate to more aggressive treatments like the drug Velcade or the desired second stem cell transplant. The physical therapist returned last week as well, and we are waiting to hear if the insurance company has approved regular visits to the home again. In the meantime Lance is doing PT exercises on his own, but I prefer he work with a therapist, because it becomes dedicated, structured time for his exercises, and I do not have to make suggestions or be the nag.....at least about this!

For this latest MSKCC appointment we took another ambulance ride, but this time we hired a local company who arrived on time and waited for us there. We were home by 6:30 pm with the only delay in leaving the city. I decided we should continue to use the ambulance rides since they were approved by the insurance company, which is not an easy trick, and because I fear that if I tell the insurance company we don't really, really need one, they will not approve it down the road if we genuinely, absolutely really, really need an ambulance. It does take a load off of me for a few hours and we save on gas and toll money, but the new issue is that Lance really, really hates the ambulance! He feels every bump and pothole strapped onto the stretcher, and New York seems to be a permanent construction zone these days. The roads are terrible. We've tried using extra pillows for him to sit on, and sitting him upright on the stretcher, but he was still uncomfortable. By the time we got home he said they should "Hurry up and get me off this f#*king thing." We'll have to duke it out over whether or not to use the final approved ambulance ride for the next appointment on August 11th.

In the meantime, with all that is going right, we have a new problem. Lance has developed large water blisters on his legs in areas where he has had previous leakage. The old wounds had healed and new skin had grown over the area in a few months, but now those same spots have sprung open again, and water is tickling out pretty rapidly. I must change the dressing 2 or 3 times a day. I may just wrap a towel around the area to absorb the water, because I am going through 25 or 30 large gauze pads a day just to absorb all the fluid. One of the blisters is the size of the palm of my hand. I drain it and it fills up again in hours. I called MSKCC and the covering doctor on call said to keep doing what I am doing, but if any redness appears or if Lance runs a fever, to bring him to the Urgent Care. So far, so good. The only trouble is the constant wetness. We have elevated Lance's legs even higher so that the fluid will not run down stream to this shins, where the breaches are, but I must keep an eye out to make sure not too much fluid collects in his torso which will make it harder for Lance to breathe, so we change his position occasionally. I'm not sure how these blisters are supposed to heal while the area is so wet, but I will keep doing as the doctors tell me. I am concerned because the chemo drugs Lance took last week have made his immunity weak again, so I must be very diligent about inspecting the blistered areas for any signs of infection. I tried to put compression stockings on Lance this morning, but the breached areas under the skin of the blisters were too tender for all the pulling an squeezing that I need to do to get those socks up, so I will hold off for a while. So long as the areas stay covered, clean and elevated, I do not mind that fluid is escaping from them right now. One of Lance's feet is actually looking smaller today because the fluid that was destined to travel to it has been diverted by the breach in his shin! I will try to get a hold of Dr. Comenzo, who is back from vacation on Monday, to ask if he wants to see these blisters before our next appointment on Friday.

I will update again after our next appointment with Dr. Comenzo on August 11th. I am back to work again full time, so I will update just once a week unless there is news to share.

Many thanks for all the good wishes for Lance and I!
~Lisa

Power Play

2006-07-27T22:33:00.000-04:00

Lance had his first follow-up appointment today, and all is well. He has been using the BiPAP machine at home since his discharge from MSKCC last week, and things are going pretty well. He can take the BiPAP mask off for up to 2 hours in the morning and afternoon and use just the nasal canual to deliver oxygen. This way he can eat and relax without having to wear the mask. If he gets sleepy we must put the mask on him right away, but more often than not, it is Lance who asks to switch over to the mask because he begins to feel sleepy and wants to take a nap. I appreciate that because it means it don't have to "watch" him so much, which I anticipated I would need to do. I assumed he would rebel against the mask because he refused to wear it for the past five years with his snoring C-PAP machine, and so the machine was used maybe twice, and for less than an hour each time! Lance had zero tolerance for the mask! Oh, the arguments...! But I guess when you tell a guy that it is the mask that is essentially keeping him alive, well, that's a different story! You didn't say that before...!

Lance has resumed some oral chemotherapy to fight the amyloid disease. He had to take a few months off with his recent bouts of CHF, the pulmonary embolism and the CO2 spike. He is tolerating the chemo pretty well and has no complaints. He is taking melphalan and dexamethasone for a very short duration, just 4 days a month. Today was his last day. The dex did give him the expected"boost" in energy and he did not get any nausea from the melphalan, although the melphalan may cause him to loose his hair again. However, Lance doesn't seem to care about that. He is actually hoping to get his afro back! After his last chemo, his hair grew back in straight! I loved it, but he was very wierded out by it! I would comb it and part it and put gel in it! He hated it! He'd whined, "Ewwww, my hair is straight!" I told him not to worry, he is still a funk soul brother.

We saw a covering doctor today. Dr. Comenzo is on vacation and he set us up with an associate who basically gave Lance a quick once over and sent us on our way. All I can say is Dr. Comenzo better be off somewhere staying very healthy, because we need him!!! No bungee jumping please, Doctor! Don't forget that SPF!

The only hassle about today was that we now need an ambulance to transport Lance to and from his appointments in Manhattan, because his breathing equipment needs power, and he needs a lot of high flowing oxygen. I have an high capacity inverter that would allow me to plug the BiPAP into the cigarette lighter of our van, but I would need to lug four canisters of oxygen and pull off the road twice to switch the tanks for us to make the round trip in our van at the high volume the machine needs. So the ambulance seemed like the way to go, and I was ready to give up the responsibility for a couple of hours in transport, but I may rethink this. The problem with today was the waiting. We waited forever for the lost ambulances. The one that picked us up was an hour late and I had to beg the doctor's office to see us anyway. Even though it was a short appointment, the ambulance that took us there did not stay and I had to call the company to dispatch our ride home. They took an hour to get there. We got home at 9:30 pm. Ugh! I think I might give it a go for our next trip into Manhattan next Thursday.

After we got home last week, I spent some time contemplating what I would use as a power source for the breathing equipment if the power goes out. There were a lot of stories occupying the news last week about power failures, and the heatwave was making a lot of thunderstorm pop up. I kept thinking that tomorrow I was gonna get something figured out. Well, before tomorrow came, didn't we have a power failure! Shit! Can I get a friggin' break for a day, please?! So now it's pitch dark and I am in a semi-panic and kept repeating, "It's OK, honey, It's OK honey." And Lance would reply, "Yea it is, are you OK?" I fumbled around, couldn't find the flashlight, and couldn't find the portable oxygen tank! Then the lights come back on, but they are blinking like they may go out again any second. I scrambled for the flashlight and oxygen tank and in another minute, the power goes out again for 20 minutes. By now I have calmed down a bit because I had the flashlight and O2 tank. Remember, Lance can come off the BiPAP for up to 2 hours, so he was fine. I called the power company and reported the outage. We are on their "special" list because of the medical equipment. I was giving them 10 more minutes to restore the power or I'd have to call 911 and have them bring Lance to the local ER to get plugged in! Thankfully the power came back about 2 minutes after I hung up with the power company. You can bet I took care of business the next day and we now have the inverter I mentioned earlier, which has both a cigarette adapter and a set of small jump cables, and we also have a 12 volt deep cycle marine battery to juice the BiPAP if the power goes out again. We are expecting another heatwave with thunderstorms this weekend, and we are prepared! I even know where the flashlight is!

~Lisa

Home

2006-07-20T21:39:00.000-04:00

The following are the lyrics to a song Lance and I had sung at our wedding 18 months ago. We chose it because I heard a great young singer perform it, and the sentiment and performance touched me. The song is "Home" from the musical THE WIZ, and we hired the same young singer for the wedding. Who knew that the lyrics would mean so much more now? We could never have imagined. The original was sung by Stephanie Powers or Melba Moore, I can't remember which, but she was singing the song as Dorothy wanting to go home to Kansas. I thought the lyrics described how a happy marriage could be, when you always look forward to going home, especially if the road's been bumpy, or if you've been a traveling troubadour like Lance was and, God willing, will be again one day. My mom forwarded me the link to an MP3 of the song on Real Player.

Anyway, today Lance and I are so happy to be home.

"Home"
from THE WIZ

When I think of home
I think of a place where there's love overflowing.
I wish I was home
I wish I was back there with the things I've been knowing.

Wind that makes the tall trees bend into leaning,
Suddenly the snowflakes that fall have a meaning
Sprinklin' the scene, makes it all clean.

Maybe there's a chance for me to go back there
Now that I have some direction.
It would sure be nice to be back home
Where there's love and affection.
And just maybe I can convince time to slow up,
Giving me enough time in my life to grow up.
Time be my friend, let me start again.

Suddenly my world has changed it's face,
But I still know where I'm going.
I have had my mind spun around in space,
And yet I've watched it growing.

If you're list'ning God
Please don't make it hard to know
If we should believe in the things that we see.
Tell us, should we run away,
Should we try and stay,
Or would it be better just to let things be?

Living here, in this brand new world
Might be a fantasy,
But it's taught me to love
So it's real, real to me.

And I've learned
That we must look inside our hearts
To find a world full of love,

Like yours,
Like mine,

Like home...

Strike That...Reverse It

2006-07-19T21:22:00.000-04:00

I spoke too soon! We received word this afternoon that Lance WILL be discharged Thursday after all! Suprisingly, everything fell into place with the insurance company and the equipment company, and all systems are go. We should be home by dinnertime.

Red Tape

2006-07-19T12:37:00.000-04:00

We are having trouble getting our insurance company to cover the BiPAP machine that Lance needs in order to go home. The team here is working on it, but it may take a few more days to get this straightened out. It seems to me that the insurance company is making a huge mistake in not approving the equipment, because I know from past billing statements that it cost upwards of $2500/day to be an inpatient here at Sloan Kettering, and althought the equipment is not cheap, it is not near the expense they are racking up by keeping Lance here. It doesn't take a genius to see they are making a mistake on this one! Lance cannot go home until the machinery is there, so it looks like we will need to hang out for at least another 2 days. Of course if things are not sorted out by the weekend we may have to stay even longer.

The pulmonary doctor told Lance today that he can try taking off the BiPAP mask for 1-2 hour spurts during the day, but he will need to always wear it at night or while napping. The doctor told me it was important to keep an eye on Lance while the headgear is off, and if he starts to nod out I should put the mask back on him. Because of this, Lance will never be able to be left alone with the mask off, and the doctor said that if I plan to go out for a few hours that Lance should put the mask on and leave it on in case he starts to nap while I am away. Today already he has taken it off for an hour and used just the nasal canuala and straight oxygen. He did well, but when he did start to nod out I had to put the mask back on him. I don't know if his napping was just natural fatigue or an indication that a CO2 spike was occuring, but the team draws blood daily and any spike in the CO2 level will be addressed promptly. Lance's current CO2 level is 42%, down form 55% when he was admitted, but up from 28% which was his average during his last admission here earlier in July. 28% would be an unacceptable level for a healthy person like me, but for Lance, with his menagerie of problems, 28% is acceptable enough for him to sustain life and is probably as good as it will get for him until or unless the upcoming amyloid treatment improve his heart function. Again, the reasons for the build up of CO2 in Lance's lungs are dehydration from the massive diuretic he was on to halt the CHF he experienced last month when he shed 30lbs of fluid in 3 weeks; the sedatives he was taking for anxiety that were interfering with his respitory rate and making his breathing too shallow; and Lance's enlarged tongue which is impeding his ability to exhale efficiently.

Lance's stomach problems are improving and today he was cleared for a regular food diet, although he must order from the low sodium menu, as he will forever. Still the options are much better than jello and chicken broth, and Lance has developed a liking for the less salty foods, so much so that when he has tried foods that are not low sodium, he does not typically care for them anymore.

So we are stuck here until the insurance company takes its head out of its.....and approves the equipment we need. I guess I shouldn't be too pissed at the insurance company, though, since it has already paid out over $200,000 on our behalf. Ugh!

~Lisa

Let's Roll...

2006-07-18T10:10:00.000-04:00

We got word today that Lance is doing well enough to be discharged on Wednesday, providing that we will have a BiPAP machine delivered to our home on time, and that there are no other setbacks. In my last post I mentioned that Lance is on a C-PAP machine like we have at home, but I was wrong. Here in the hospital, Lance is on a BiPAP machine that pulses forced air through his nose. A C-PAP machine is different because it has a continuous pressured airflow intended to keep the airway open in snorers. A BiPAP is the proper machine for Lance because the pulse action allows him to exhale more substantially, therefore expelling the CO2 in his lungs.

Lance's stomach situation has also improved and a CAT scan performed yesterday showed no obstructions. His bloating is the result of a slow moving digestive system and are waiting to find out the plan to prevent the bloating from getting too bad. His stomach is much less bloated and softer and Lance has been given the OK to start consuming a liquid diet, although I must admit to giving him a couple if contraband jellos yesterday!! Don't ask how I smuggled then in... ! ;} The poor guy hadn't eaten anything for one week, and as he got rid of some of the air in his stomach, his appetite returned. Today, however, all of his jellos will be legal!

I'll post more later if anything changes, otherwise I will let you all know when he is home.

HOORAY!!!!
~Lisa

Breathing Easier

2006-07-15T13:01:00.000-04:00

Lance is holding his own and feeling pretty good for a guy who has been told three times since May that he may not make it through the night! He continues to beat the odds and the doctors are talking about "eventually". They are saying that eventually, when the CO2 numbers return to a safe level, he may be able to use his own C-PAP machine at home therapeutically throughout the day to maintain the correct level of CO2 in his lungs. It is not too much more to add to the mix, and if it means he can continue with the treatments to arrest the amyloid disease, it will be well worth it.

Just prior to being admitted on Thursday, Lance's had an appointment with Dr. Comenzo. He determined that Lance was probably not strong enough to be enrolled in the last opening they had for a Velcade clinical trial. Velcade is a potent drug that has been very effective in stopping the nasty FLC production that creates the amyloid protein. It has been used in multiple myeloma patients for a while now. These particular clinical trials are to see how it works for patients with amyloidosis which is sort of a cousin of myeloma. While Dr. Comenzo felt that Lance could probably tolerate the drug side effects (low BP, weakness), he felt that Lance was already assessed on the low end of the scale used to measure his physical strength and ability to care for himself. Lance already requires a lot of assistance with everyday living, and outside of a study he could be prescribed Velcade, but for the purposes of this clinical trial he is actually too weak. Dr. Comenzo said that for clinical studies they prefer to use folks who are sick and need the treatments, but not too sick as to make the patients quality of life more compromised. Another reason not to push for that last spot in the clinical trial, is it would require 5 to 6 weeks of pre-testing before Lance would receive the first doses, and Dr. Comenzo and I both agreed that it was in Lance's best interest to not delay restarting his amyloid treatments any further. He hasn't had any drugs to curb the amyloid production since early May. Of course, before the end that meeting with the doctor, Lance's blood work came back showing the build up of CO2 in his lungs, and all bets were off!

So now the plan is, assuming Lance bounces back from this latest emergency, to get him started on a therapy of oral mephalan and dexamethasone for short spurts of four days per month. We know that Lance's amyoid disease is sensitive to both these drugs. He was given high dose mephalan as part of the stem cell transplant he had last December which cut the FLC number in half, and he was on dexamethasone for 3 months and his FLC number dropped even more dramatically. This particular drug cocktail is often prescribed for amyloid patients that are either too ill or too old (70ish+) to have a stem cell transplant, and it has proven to be a very effective course of treatment. Dr. Comenzo feels confident that Lance will tolerate and respond to this combo, and we now we are waiting on the doctor's decision as to when to start Lance's dex/meph treatments. If he had not been admitted for the lung problems this week, he would have started it on Monday 7/17, but that is now postponed for the time being. Lance's current FLC number is in the high 300's (up from his lowest 114 after 3 months on dexamethasone, but much lower than when he was first diagnosed at 2200), so his disease is not raging as it once was, but because his heart function is already so poor, even this fairly low (for Lance) FLC number can add insult to injury. Perhaps Velcade or the new potent drug Revlimid, or even that second stem cell transplant will be put back on the table as an option if Lance's responds as they expect he will to the dex/meph cocktail.

More tomorrow...
~Lisa

Setback

2006-07-14T16:36:00.000-04:00

Lance has had another setback and has been readmitted to Sloan Kettering. He has a high build up if carbon dioxide in his lungs, a result of becoming dehydrated from the diuretics and his enlarged tongue. Apparently what was good for his heart, is devastating to his lungs and his ability to respirate. Lance has been very sleepy lately, and it turns out he was suffering from carbon dioxide (CO2) poisoning. When we breathe, we breath in oxygen, and breath out CO2. Lance is not expelling CO2 on his exhales efficiently, so the CO2 has built up in his lungs and he was very close to needing a ventilator yesterday. Since Lance has determined he does not want to be put on a ventilator, they are aggressively trying to expel the bad CO2 from his lungs in other ways, although we were told once again that he may not make it through the night. Well he did, and he is improving. He is on a C-PAP machine like the one worn by snorers with sleep apnea. They are trying to force air into his lungs to expand them and expel the CO2. This is the most aggressive they can be without putting a ventilator down his windpipe. My stubborn husband is not ready to call it quits yet, but he is fully aware of the situation and knows the doctors are running out of treatment options. Still he is defying the expectations of the Urgent Care doctors who admitted him yesterday. They have all stopped in to see how he made it through the night, and one of those doctors declared, "Wow!" when she saw him awake, alert and breathing better. One change in his treatment means that he can no longer be given any sedatives, as they were part of the problem with his breathing being too shallow to expel the CO2. The sedatives were making his brain tell his lungs that they did not have to expand fully, so for now - no more sedatives at all (except for me!). We do not know if or when Lance will be able to go home. We are taking this latest development hour by hour, and so far we are moving slowly in the right direction. I will post more when I can, but please pray for Lance's peace of mind during this difficult time, as he will not be able to squash his fears with ativan, or xanax or any other medication that has helped him cope in the past. We did have a lovely visit from the Episcopal chaplain who prayed the Serenity Prayer with Lance. and it did seem to comfort him. I know it did me.

~Lisa

Home.....Again!

2006-07-07T10:07:00.000-04:00

Lance came home yesterday! He is doing well and very happy to be here. I have a lot of planning to do and tracking of his vitals, and we must continue to to to track his fluid intake, output and daily weight, but so far all is well. Lance lost almost 10lbs of fluid in the two weeks as an inpatient! We go back to see Dr. Comenzo on July 13 , and hopefully Lance will get the green light to start Velcade. Keep your fingers and toes crossed that he can proceed with the amyloid treatments!

~Lisa

One More Day for Good Measure

2006-07-04T12:24:00.000-04:00

Doctors have decided to hold onto Lance one more day and now plan to release him on Thursday. The low dose of 6.25mg of the beta blocker lopressor does not exist, so they are going to try the smallest dose available, 12.5mg, want to keep him another day to observe him at this new dosage. He will take the 12.5mg dose twice a day instead of the schedule of three times a day that he has been taking the 6.25 dose here in the hospital. Since the doctors want to simulate what a typical day at home will be like for Lance, they are keeping him here to monitor the new dose, and assuming all is well, he will go home Thursday. We are a tad disappointed about the delay, but we understand the reasoning and would prefer to stay another day than bring Lance home and discover a complication.

~Lisa

Success!

2006-07-03T10:24:00.000-04:00

Well, the experiment worked! Taking just the tablet form of the diuretics he needs, Lance peed over 3 liters of fluid on Sunday, surpassing his personal best by a whole liter!!! And this was without drinking a ton of beer which is the only thing I can think of that would make someone pee so much! Now that his stomach can absorb the lasik and the booster zaroxalyn, the doctors would like to give it a few more days to get him off of the IV beta blocker Lopresser and transfer him to the pill form of that as well. Problem is, Lance is taking a very low amount of the the beta blocker, just 6.25mg, but the lowest dose the pill typically comes in is a 25mg tablet, so they need to special order the lower dose. With the holiday tomorrow the special order is not likely to arrive here on Tuesday, so we are now looking at a possible Wednesday release and we can take Lance and all of the various pills home. We will be so relieved to go home, but I am also a bit happy that we will get to see the Macy's fireworks tomorrow night. I must be crazy to want to stay here another night, but we never get to see the big fireworks display live and in person, so I am actually excited! It will be a great way to cap off a difficult 2 weeks and celebrate the anticipated homecoming the next day.

I will meet with the discharge nurse sometime today to set up any of our needs once we get home. Lance will continue his physical therapy and have home bloodwork and oxygen. I also hope to replace the motorized recliner we had that lifts the patient out of the chair. Lance burnt out the motor on the one we received as a donation from the Red Cross. We'll try and get the insurance company to cover it, or at least try to find a good deal. Lance is still sitting upright to sleep as he is fearful of becoming short of breath when he lies down, so this chair will also double as his bed and it is an important element in ensuring he is comfortable at home. Lance did not sleep in his hospital bed the entire 2 weeks we've been here, so I doubt he will be willing to try at home even if we got him a real hospital bed, and I see no reason to press the issue with him. Whatever makes him comfortable. The half tablet of klonopan worked well on Sunday, too. Lance was pretty calm all day, but not too sleepy. He nodded out here and there but nothing like Saturday when he slept hardcore for 8 or so hours.

If all goes well my parents will come on Wednesday and pick us up in the van. They flew up from Florida last week when I had a little melt down and have been staying at our condo while I've been here with Lance. They will lend a hand getting Lance settled in once we are home and will then head off to visit grandkids for couple of days before heading back to Florida on Friday. Lance's family has been awesome as well and yesterday his sister Beth and her husband Jim came by to sit with Lance while I went out to dinner with my parents. We are very blessed to have so much support. I don't know how we could get through this without them, and our friends, who always let us know that we are loved.

Big thanks to everyone!

XOXOXO
~Lisa

Sunday Experiment

2006-07-02T09:26:00.000-04:00

It appears we can plan on being here at MSKCC for another few days at least, but an effort is being made once again to get Lance on the oral form of the drugs he needs so that we can get him out of here! They are trying to give Lance intermittent doses of another diuretic called zaroxalyn. He has had it twice while an inpatient, and it acts as a booster with the lasik. He urinates twice as much when using the zaroxalyn, so it is to be used sparingly in someone with Lance's heart condition, as they do not want to take off too much fluid at once and send him into another kind of cardiac distress. The thought is to send Lance home with a schedule of taking zaroxalyn maybe 2-3 days a week with lasik to maintain the fluid loss we have accomplished in the hospital. Today he is getting straight lasik tablets in the morning, and if by 3pm if they do not like his output (meaning how much he has peed), he will get more lasik tablets and as well as some zaroxalyn. If his output is adequate, then we may have found the golden ticket out of here! If his output is still low, we can plan on staying here a few more days. If we determine that the pills are still not absorbing correctly in his stomach, I've asked the doctors to consider putting a permanent IV port in Lance's chest wall and administering the IV meds to him at home with a visiting nurse, or even by me. Doctors are open to the idea, but make no promises.

Lance's weight decreases everyday which is great because that is the fluid coming out of his tissues, and not from malnutrition. As a matter of fact Lance is eating better than ever! He has large breakfasts of an omelet and cereal, or pancakes and a danish, so we are sure that the weight loss is fluid and not from low caloric intake.

After adjusting the dosage the beta blocker Lopressor that slows and regulates Lance's heartbeat, Lance did not have any arrhythmias yesterday. To help him alleviate his anxiety for longer periods, they have switched Lance from xanax which has a short life, to klonopin. Since a main side effect of most anxiety medications is drowsiness, Lance slept all day Saturday. Today they are giving him half a pill to see if he can stay awake some.

So today we will wait to see if the new experiments with the tablets works. If not we will likely be here for the Fourth of July and will have a great view of the Macy's fireworks display over the East River. Lance's room has a perfect view of the Queensborough Bridge which will make a dramatic vista! This will be the third holiday Lance has spent as an inpatient. We spent last Christmas and Lance's birthday here as well.

~Lisa

One Day at a Time

2006-06-29T19:41:00.000-04:00

Lance has not had any more heart palpitations since yesterday at 7am, and so today they cut in half the dose of the beta blocker Lopressor and added the lasik back into the mix. However he still having trouble absorbing tablet medications through his stomach, and so the doctors are keeping him a few more days to continue to take the excess fluid off of him via IV before sending him home. We were hoping he would be discharged on Friday, but that will not happen. ...One day at a time.

~Lisa

Flutters

2006-06-28T12:29:00.000-04:00

Overnight, Lance experienced heart palpitations that are concerning the doctors. He has had these flutters before, but apparently last night he had a few and they were longer in duration than his past episodes. Lance did not feel anything unusual and we didn't even know they were happening. One doctor came in to Lance's room around midnight and examined him, but she did not mention that his heart monitor had shown any unusual activity. Lance slept well and this morning his team of doctors came in and informed us of the flutters. Because last night's episodes were greater than his typical palpitations, they decided to start him on a beta-blocker to steady his heart rhythm. The drug, called Lopressor, can also lower blood pressure, so they decided to not give Lance any of the diuretic lasik today so as to not overwhelm him. His blood pressure is still reading in the 90's, which is good for Lance, but the combination of both drugs together might cause a dip, and so they are proceeding cautiously. They gave him an IV dose of lopressor this morning and have taken his blood pressure a few times. So far, so good. His pressure has not dropped. If all is steady with his pressure they will begin to slowly reintroduce the lasik doses later in the week. Although Lance has taken off a lot of fluid in the past week, we must still ensure that we get him to a dry weight to prevent another round of congestive heart failure and to enable his stomach to absorb the medications that he will need to take orally once home. This latest bump in the road is making me think that the Friday discharge may not be realistic now. No one has told us that, but if we are adding new drugs to the mix and need to "wait and see'', Friday may be too soon to accomplish all we need to do to ensure he is stable.

Discharge Delay

2006-06-27T20:07:00.000-04:00

Lance's discharge has been pushed back from Wednesday to Friday. Yesterday the doctors attempted to transition him from the IV delivery of the diuretic lasik to the oral pill form, but he did not put out enough fluid on the pills. Tablets require the stomach to absorb the medication, and the edema, or swelling in Lance's gut is preventing that from happening efficiently at his standard dose of 40mg lasik. By 3pm when he had not urinated enough, they gave him another IV dose of the drug to continue to get the water out of him. He responded well to the IV dose and this morning they tried the tablets again, but this time they doubled the dose to 80mg. This worked much better, probably because of the extra fluid taken off by yesterday's IV doses, and it should continue to work as more and more fluid is taken off. This also probably explains why the edema crept up as it did in the days before he was admitted to the hospital. The swelling in his stomach prevented the proper absorption of the once effective dose of 40mg, essentially leaving his body without assistance to eliminate the excess water it needed to. Over the course of a few days the fluid build up became severe and congestive heart failure (CHF) set in. Since this morning's experiment of of lasik 80mg pills worked OK, the team decided to go back to IV doses again to capitalize on Lance's inpatient time, but they feel confident that when he is discharged the 80mg pills will do the trick, as he will be even dryer after another few days of IV doses. As the edema in his gut subsides his stomach absorption will continue to improve, and the lasik pills should be sufficient to prevent the build up from occurring again and snowballing into another round of CHF. Unlike his last discharge from the hospital in May, his swelling is visibly smaller, especially in his left arm and hand which are pretty normal looking now. When he was hospitalized in May he never really got this much fluid off, so perhaps his stomach was not really working at its prime to absorb the tablets in the weeks he was at home. Although we were very aggressive in restricting his fluid intake and sodium consumption after his last bout of CHF in May, we must be even more attentive to the delicate balance of keeping the fluid down and his blood pressure up.

Dr. Comenzo wants to see Lance as early as July 6 to assess him to start the Velcade treatments. As Lance said when the nurse practioner Lauren told us of Dr. Comenzo's plan, "Good! Let's get this party started!"

~Lisa

Improving

2006-06-26T10:47:00.000-04:00

Lance is doing much better. The diuretic cocktail he was given worked well and he has lost considerable fluid in his lungs and limbs. His breathing is less labored and his energy is up. The plan now is to continue taking off the water weight here at the hospital for two more days, and then discharge Lance on Wednesday barring any setbacks. Lance's blood pressure is stable in the 90's allowing him to tolerate the extra diuretics they are giving him. The doctors feel he responded to this treatment as best as they could have hoped for. The trick will be to prevent the fluid from building up at home again, which is likely to happen as long as his heart is so damaged. The plan for now is to play with his lasik dosage depending on his daily weight. If he goes on a pound or two, we will increase his lasik dose. If that doesn't do the trick they will add a second more potent diuretic to the mix that will surely keep the water from reaching levels that would trigger another round of congestive heart failure.

Dr. Comenzo is optimistic that Lance can begin the Velcade treatments shortly. They considered starting him on the treatments while he still is an inpatient, but decided against that for now. The doctor prefers he settle in at home and continue stabilizing his fluid retention before starting the new treatments to stop the amyloid production that is stiffening his heart. We all agree, though, that the treatments must start soon as his damaged heart cannot really take any more deterioration. Lance is looking forward to going home and continuing on the road to recovery.

I will post again when we are home.

~Lisa

Heart Damage

2006-06-24T13:00:00.000-04:00

Lance has had a rough couple of days because of the fluid build-up in his lungs. Only today is he really starting to feel better. The doctors were concerned about giving him too much of the diuretics because they are fearful of making his blood pressure plunge and causing him more distress. Lance is on that borderline between having too much fluid in his body, but still needing some for his heart to function as best it can. A recent echocardiogram shows that in the month or so he was off dexamethasone that the amyloid has further infiltrated his heart. It is stiffer and the mitrial valve is leaking more than it was even last month. We had a conference with them to determine Lance's wishes if the diuretics caused him to go into respitory distress, and if he wanted to go to ICU and be ventilated in the event of an emergency. They said it was better to have the conversation now instead of when Lance may be incapacitated. Lance shared his wishes with the physicians and we moved forward with the treatment.

We went into last night not sure if Lance would tolerate the diuretics that were necessary to stave of the congestive heart failure and save his life. We called his family to keep them apprised of the situation and he took the double dose of IV lasik and another more potent diuretic whose name I cannot recall. In a matter of 2 hours, Lance urinated 2 liters of mostly clear fluid! His personal best! The good news is he is stable, his pressure has not dropped and he can breathe better than yesterday. He was given another dose of Lasik this morning and urinated another liter.

Even though he appears to have dodged today's bullet, we have much more to deal with. The damage to his heart is extensive and there is absolutely nothing stopping him from building up fluid and going into CHF again while his heart is in this condition. A team of doctors spent most of yesterday morning consulting with cardiologists from Cornell-Weill Medical Center and New York Presbyterian Hospital, both of which are across the street from Sloan Kettering. The possibility of a heart transplant was broached with the cardiologists, but because Lance also has multiple myeloma, he would not likely be a candidate for that, although they said nothing was off the table yet. A heart transplant would buy Lance the time to resume treatment for the amyloidosis, treatment he could not tolerate now. Some amyloid patients like Lance have had organ transplants, then go on to have a stem cell transplant to help prevent the disease from attacking the new organ. But Lance's underlying myeloma cancer makes him a less likely candidate. You can see how the people who determine who gets a new heart may have issues with giving one to a person with an aggressive systemic disease that is likely to damage the donor heart just as the first one was damaged. Still, we will pursue any course of treatment that holds the best chances for Lance. He is young, just 51, and a new heart could extend his life dramatically. Dr. Comenzo, who is in Europe now but who is calling in daily, still feels that if Lance's heart condition were stabilized that Lance would respond very well to Velcade which should arrest the free light chain production that causes the amyloidosis. In theory, with the amyloid production halted, his heart can repair itself. This is the notion we hold on to. We just need to get him to a place where he could begin Velcade treatments, and if a heart transplant needs to come first, we will do that.

Lance is managing all of this dire news with some anxiety, but he is receiving medication to help him with that, and today he seems much more solid emotionally. I guess since he can breathe better and did not need to go to ICU overnight, that the scare is over for now. He is resolved to get better. He said he would gladly have a heart transplant if it would help him. We must take things one day at a time and do not see him going home any time soon. But his strength is better than it was during his last hospital admission, probably because of the physical therapy he has received in the past month. Lance is able to stand and walk briefly with little physical assistance, so his transition home should not be as difficult as it was last month when he was released but still very weak.

Many thanks to all for the good wishes. They really help! I will post more when I have new news.

~Lisa

More Congestive Heart Failure (CHF)

2006-06-22T11:35:00.000-04:00

Lance has had a hopefully minor set back. He has been admitted into Sloan again for congestive heart failure. In the last 2 or 3 days his breathing became more labored, and sure enough, he has a lot of fluid in his lungs. We had a standing appointment with Dr. Comenzo yesterday and he told us to bring Lance down to the Urgent Care Center here to receive IV Lasik to get some of the fluid out. He was then admitted at about 9pm Wednesday night. He has had chest xrays and EKGs and is currently having a echocardiogram. Soon he will be moved to the 12th floor which has 24/7 remote heart monitoring. Lance and I will be here a few day and do not expect the stay to be as long as last month. At least this time they know about his pulmonary embolism and they know the tricks that work for him to bring him out of CHF. Unfortunately Lance's blood pressure is not cooperating again, and they are holding off giving him Lasik while it remains too low. This morning it was 81/65, too low for a diuretic. this is one reason they want to transfer him to the heart monitor floor, so that they can give him Lasik despite the low BP and keep a close watch on him.

In our brief meeting with Dr. Comenzo Wednesday we determined that the planned second stem cell transplant in July had to be postponed. Once Lance recovers from this latest CHF episode he will begin a new drug for him called Velcade, not Revlimid as we had previously thought. In the month and a half that Lance was off of dexamethasone his FLC number rose to 440. We expected a spike, and I must say I am relieved it was not as high as I had expected it would be, considering when he started this adventure the level was at 2200! Dr. Comenzo says Velcade will give Lance a longer an more durable remission. Then, once the FLC number is nice and low, Lance will have the second stem cell transplant, maybe in August or September. From there his heart may repair itself making these bouts of congestive heart failure a thing of the past. Let's hope. Velcade is administered via IV and Lance will come here one day a week for 5 consecutive weeks for the treatment. He may also receive dexamethasone on the days immediately prior the IV treatments.

I will update the blog as Lance's condition warrants.

~Lisa

Cruisin'

2006-06-17T11:47:00.000-04:00

Things have become fairly run of the mill around here, which is a definite improvement over the hectic month of May Lance and I survived! Lance is still working with the physical therapist a few days a week, and is still improving. His mom is still stopping by most days to keep Lance company and prepare meals for him. We have gone out a bit more in the past few weeks and hope to do more in the few remaining weeks before his next hospital admission. One stop was at the Court Tavern in New Brunswick for a farewell party thrown for a dear friend who lost his battle with cancer a few weeks a go. Lance and I got to see friends that we haven't seen in a long, long while. Most of them have not seen Lance since he had become ill, but many have been following this blog and knew exactly what has been up with him, so most conversations were about other things than the illness, which I know Lance appreciated. He just wants to try and have a normal life and not obsess on the illness, so he was relieved to not have to answer the same questions over and over! I know he was a bit hesitant to roll up in his scooter, but I was very proud of him for going and facing folks who remember him as a big strapping, hard hitting drummer. He received a lot of love that day.

As for me, I have cleared the last hurdle of my big project at work and am looking forward to starting a new project for them that will occupy most of my down-time while Lance is in the hospital. We are creating a new educational program from scratch and I will be doing research and planning to get the project off the ground. I like the idea of creating something new and all of it can be done from any computer or phone, so I will set up an office in the hospital and get to work. I don't mind working while Lance is getting his second treatment, especially since we still need the paycheck! It beats the other option of Family Medical Leave that would be unpaid! Although I now have some donated sick days in the bank, I will need them for all of the follow-up visits to come through the remainder of the summer and fall following the transplant.

As we recall, the first week of the transplant is a bit tricky, but later on in the process, the patient is really just waiting to be released to go home. The "waiting" period can last upwards of a week, and as I recall, that time the most frustrating for Lance. This is the week that I will get a bulk of the work done, and will also be the time that I may sneak away to go the shore for a day or two. Lance made me promise to use the time he is hospitalized to get a break, because when he is hospitalized he is getting the best care, and it should be the one time I can leave him without worries (although considering the crazy events of last month, I'm not so sure about that!)

Anyway, I am happy that I have no drama to report. Our dull life is very satisfying right now!

~Lisa

Back to Work

2006-06-09T22:06:00.000-04:00

I went back to work this week and Lance faired very well at home with his mom's help and company. He is doing better each day and can now maneuver around on his own for short periods. The physical therapist has been coming to work with him, and Lance does seem stronger. We cancelled the home health aide that the visiting nurse service was attempting (too slowly) to set up for us. By the time the aide would have started, Lance had already made enough progress to not really warrant one, and then insurance would have surely cancelled the coverage anyway. So now Ruthie comes by in the morning and stays for the day.

Lance had a doctor's appointment this past week and they were pleased that his blood pressure is up somewhat and holding steady in the mid 90's with the help of medication. They took blood and the doctor said that he would not be surprised to see an elevation in Lance's FLC's given that he has been off dexamethasone for 4 weeks during his bout with the pulmonary embolism. The doctor wasn't concerned, though, and we go back on June 21 to discuss "the plan", which may include a short course on the drug Revlamid in an attempt to bring down the FLC's as low as possible heading into the second stem cell transplant. We should also get confirmation of his admission date in July and the hospital will get the ball rolling with the insurance company to get the second procedure covered. In the meantime, I am still waiting to hear if the hospital has accepted us into their financial aid program that will waive any overages that insurance does not cover (considering the higher than customary rates at this premiere hospital). Let's hope! We are good customers, after all. Lance give 'em tons of business!

My return to work has been a welcome respite from the past rollercoster of a month. I owe it all to my immediate co-workers who, although I was away for a month during our busiest time, eased my re-entry into the office by leaving me with very little catch-up to do. When Lance became ill I had to leave at the worst time possible, and these good people covered my butt, leaving me with very little to agonize or fret over in my absence. Because of their care and consideration, I actually found a moment or two this week to relax and enjoy the quiet. Lance is doing better and is safe at home, work was under control, and I can take breather! Ahhh....

~Lisa

Music Cares (and friends do, too!)

2006-05-31T22:09:00.000-04:00

I want to share some good news today. We received word from the social worker at MusiCares, the charity arm of the Grammy Awards which has been serving as Lance's case manager, that another organization called the Musican's Foundation (formerly "The Bohemians") has agreed to pay our mortgage for 2 months! This means our mortgage is covered through October 1st with music organizations like the Jazz Foundation of America, MusiCares, the Actor's Fund and now the Musican's Foundation picking up our mortgage payment since last January. We have an application in to one last music group, Sweet Relief, that we hope will cover the remainder of the mortgage for the year. To date we have received close to $10,000 in grant assistance from musicians' charities, and this latest news is a real relief. Lance is so touched by the outpouring of support and generosity. It really make his day easier to bear.

We had been very worried about the extra expense of hiring a home health aid beyond our insurance coverage, but Lance has had a few good days with physical therapy and is more mobile and able, so we may not need a home health aide here with him all day. We may just take what insurance will cover and ask family to cover the remainder of the day until I get home from work. He'd prefer his mom come by instead of a stranger anyway, and Lance is much better on his feet than he was even a few days ago, so we feel confident that by Monday his mom will be able to keep him company, spot him when he needs to walk a bit and prepare meals for him. He has a walker and a chair that lifts him up to a standing position, so he is able to get in and out of that chair with ease. What a difference few days makes!

One last bit of good news is that my boss called today and restated her's and the organization's support. She told me of how my family at work has been thinking of ways to help us, and so a few have donated sick days to me from their personal allotment. I had used up every bit of sick, personal and vacation time when Lance was hospitalized earlier this month, and now, after the donations, I have enough time to cover most of Lance's next hospitalization in July when he goes in for the second stem cell transplant. One thousand thank-you's to my friends at Paper Mill Playhouse!!!! For being so unlucky, how did we get so lucky????

~Lisa

Progress

2006-05-30T09:49:00.000-04:00

Lance is making progress everyday and I think he will soon be back to where he was before the latest blood clot incident. He still needs a lot of monitoring and assistance, but he is in good spirits, eating very well and getting up and walking around the apartment more. I am still trying to get a home health aide to stay with Lance during the day so that I can return to work before their patience runs thin (let's hope I still have one - I've been out almost 4 weeks now and have used up all of my vacation, sick and personal time). The wheels of medicine turn too slow for us! The Visiting Nurse service has approved a home health aide, but it will be perhaps another week before one actually appears at our door. Insurance will cover some of that expense, but we will need to pay out of pocket for a good portion of it. Our immediate goal is to get an aide in here until Lance's next hospital admission in July for his second stem cell transplant, and then beyond that we will need to make a new plan. It is so hard to plan all this while still juggling a full time job, but without Disability Benefits I have no option but to work. Besides needing the health insurance and money to live, I really like my job and it has become a mini vacation for me when I can think about pleasant and silly things things like high school theatre and what to order for lunch!

I've taken the last few days to clean and organize the house with the assumption that a health aide will be here looking for things while I am gone. I've labeled Lance's dresser drawers and stocked up the bathroom and kitchen with paper goods. I've cooked some low sodium dishes and portioned them out for the coming week. However, it looks like I will be the one one home with Lance this week, so all the organizing was a bit premature, but at least I will have little to do next weekend in preparation of the aide starting next Monday (let's hope!).

Last week Lance had the first visit from the physical therapist. He will come here 3 days a week to guide Lance in his exercises. It is up to Lance to do the exercises everyday, even when the therapist is not here, another reason we need a home health aide. That way, someone other than me gets to be the nag! Lance will also be seen by an occupational therapist to help him strategize how to manage everyday tasks better with is disability, and the Visiting Nurse will come by briefly 3 days a weeks to check Lance's vitals and draw blood. His blood needs regular monitoring while he is on the blood thinner cumadin, a new medication that has entered his life since the pulmonary embolism.

Otherwise, all is quiet on this front. We had a nice Memorial Day weekend and Lance has kept up with the NBA basketball playoffs and baseball. We hope to get out a bit in the coming weeks since Lance will be house bound for most of the summer. Time to put the van and scooter to some work!

More soon,
~Lisa

Adjusting

2006-05-24T22:13:00.000-04:00

Things are progressing nicely for Lance and I here at home. The visiting nurse came today and will come 3 days a week to draw blood and take Lance's vitals. I also take his vital 3 times a day and must report any blood pressure below 80. So far Lance has been up in the 90's and 100's, probably from the medication, midodrine, and the return of his appetite. The nurse visits will be brief and so we will bring in an home health aide for Lance so that he will have someone here to assist him when I return to work after the Memorial Day holiday. Lance will also soon begin physical therapy and occupational therapy right here at home. We had some adjustments to make when we arrived home, and we needed to bring him some additional equipment, but so far the transition has been busy, but smooth. I have been researching low sodium recipes and will experiment for the remainder of the week. The home health aide will prepare meals for Lance, but they must be low sodium and home cooked, so I need to have some prepared options ready for the aide to reheat each day. All in all, though, Lance is doing very well. He is playing his PlayStation and enjoying sporting events. He is eating more than ever, and eats more solid and substantioal meals than before his hospitalization, although he still goes for the oatmeal every now and then.

More soon...

~Lisa

Home

2006-05-22T09:24:00.000-04:00

10:30 am: It's official - Lance goes home today! We have a lot of planning to do and will have nurses and physical therapists coming the house over the next few weeks, but we will be very, very happy to be home!

It looks like Lance will be released today, but we have not seen any doctors yet, or received any discharge papers or instructions, so I cannot say for sure that he will be home today. Stay tuned...

Set Back

2006-05-20T08:48:00.000-04:00

Well, it looks like this will NOT be the day Lance is discharged form Hospital X. The attending physician is not happy with his low blood pressure, which has dropped to new low levels, even for Lance (69/40). They tried all night to give him treatments that would boost his low BP (whole blood, albumin, fluids and another medication whose name I cannot recall), but none were effective and they have decided to call in a cardiology consult and will do an echocardiogram of Lance's heart to see what is up. Lance is very tired and cranky because he was awoken several times throughout the night to get an IV hooked up, or to take a pill, but what can you do? They were giving him these treatments all night to get him stable enough to go home, as they suggested might happen today, but it will not be. They are also going to take more blood cultures to rule out a new infection that might be dropping the BP, and they would also like to put therapeutic stockings on him to keep blood from pooling in his legs, another factor possibly contributing to his low BP. He's worn the stockings before for a few months, but they would dig into the skin on the crease at the front of his ankles and we were fearful the sore and irritated red skin would eventually break leaving an open wound. Lance stopped wearing the stockings about 2 months ago, and the area has healed nicely, so he should be able to tolerate the tight stockings again. As I type this it occurs to me that had he kept on wearing the stockings despite the sore ankles, he may have avoided the blood clot that originally formed in his groin and then moved to his lungs. Oh well, damned if you do, damned if you don't. I will post more if we learn something new today from the cardiologist.

Improving

2006-05-19T18:49:00.000-04:00

Rumor has it Lance maybe released from Hospital X on Saturday. Stay tuned for more developments!

Nicey, Nice

2006-05-17T17:32:00.000-04:00

Although we've been critical of some decisions made here at the hospital, most of our concerns were addressed today and I am satisfied that similar problems will not surface again. We all had a meeting of the minds and I feel confident that we have been heard. We have also discovered that this blog has come to the attention of the hospital, and I have been asked to refrain from mentioning the hospital or doctors by name. (From here on out I will refer to them as Hospital X and Doctor X!) Funny, for the past six months, when we had nothing but glorious praise for the hospital and doctors, it was ok to mention the name, but now the story has changed. I will resist the impulse to argue this point and as show of good faith, I have taken down the few recent posts that detailed the problems and my anger. After all we may be here a while and the last thing we need is for the staff to be hesitant or uneasy about talking to us, so we have decided to make nicey, nice.

...and to put our Libertarian friends at ease, it should be noted that Hospital X did not request/demand that I take those posts down. It was my idea and decison, and I feel good about it.

~Lisa

Tense Tuesday

2006-05-16T19:53:00.000-04:00

Lance is still doing well and continues to make small strides each day. He walked some more today and his appetite is very good. this a bit if a surprise since Lance is no longer on steroids. The Dex pulses were discontinued when he was admitted last week.

However, this morning Lance felt particularly light headed and dizzy, and as he called it, "weird", despite the fact that his vitals remained as they've been for a few days now. However, the reason for the "weirdness" may stem from a disconnect between departments here at Sloan. Lance wears a pain patch which delivers a constant low dose of the opiate fentanyl over a 72 hour period. On Wednesday his patch was changed in the ICU as scheduled (and at my reminding), but when he was tranferred to his room he was not given a new patch on Saturday. When I asked our nurse on Monday morning if he had received a new patch over the weekend, she told me that there was no mention of a fentanyl patch in his meds order. Apparently, the fact that he is even on a patch, and its replacement date, "didn't transfer with him from ICU" to his current floor. I asked why that mattered since Dr. Comenzo has been prescribing the patch since November 2005 and all one has to do is read Lance's chart to see what his current meds are. I pointed that out and each doctor and nurse passed the buck and I still have no explanation other than the info was"lost in transit". I find this to be a such a very weak argument, but this is the reason they are giving us for Lance being 3 days overdue for the pain medication. I guess they feel it is a lesser evil for me to think that he is being treated for this latest incident without referencing his previous records and current medications! Either scenario is unacceptable and frankly, I am insulted that they continue to push this "lost in transit" explanation, considering the alternative is just a unacceptable. Both scenarios really piss me off. The truth is, I know they are referencing his previous records, but the truth is the info on the patch was missed. The truth is, someone is not reading Lance's chart carefully enough. Stop passing the buck. Is it too much to ask to read the chart?

Now, all of this would be behind us if it weren't for the attending doctors who have been making rounds who works with Dr. Comenzo. On Monday, the rounds doctors came in shortly after the nurse and realized that Lance was now 2 days overdue for his fentanyl patch. They examined Lance and noted that he was pain free and instead of administering a patch to get him back on schedule, they decided to discontinue the patch altogether. I questioned this because when I had asked Dr. Comenzo in April if Lance could step down to 25mcg (from 50mcg), and he said, without hesitation, "No." He noted that Lance would need the assistance of the fentanyl to begin his physical rehab, and that when the time came to take him off the fentanyl patch, they would step down the dosage. It is no secret that a person cannot completely stop taking opiates after six solid months of everyday use without there being some type of withdrawal symptoms. If people could do that, there would be no addict. But instead of attributing Lance's pain free Monday morning to perhaps, say, residual fentanyl in his system, the rounds physicians decided that Lance, clearly, was the first opiate user in recorded history to stop taking opiates cold turkey without a single withdrawal symptom! Eureka! I questioned the decision again, and the doctors told me Lance was doing fine, and if he didn't need the patch they should stop it. I told her I wasn't sure that Lance didn't still need the patch, and I told her what Dr. Comenzo had told me 3 weeks earlier. Sure, he's had no pain lately, but hello?, he's been on the patch! Ugh!

So they stopped the patch, and guess what? Lance woke up today feeling really "weird". In this case "weird = COLD TURKEY WITHDRAWAL FROM OPIATES" The rounds doctors came back today and Lance told them how he felt. They looked puzzled and questioned all his vitals, which haven't changed in days. Finally I spoke up and said, "Perhaps he feels this way because you took the fentanyl away?" "Good point," she replied, "yes, that's an interesting point." The rest of the team nodded, and they decided to resume the patch at 25 mcg. She order a new patch and they left his room - mystery solved, right? Except now they have given no thought to the fact that they are are putting a fentanyl patch on a virgin system, and it takes 12 hours for the patch to ramp up to full strength. In the meantime, Lance was left to feel "weird" for the entire day after all he has been through in the past 2 weeks? Bullshit! I asked the nurse to get Lance an order for 5mg of oxycodone to help him through today until the patch kicks in tonight. She got the order and he took it every four hours, but why do I have to be the one to suggest such a thing? None of those rounds doctors acknowledged that they had made a mistake and left Lance to have a bad day needlessly. He is a person, not a puzzle. Stop being so casual.

I had had enough and called in a nurse practioner to complain. She called the Patient Representative who stopped by this afternoon to hear our story. We were very polite, but I explained that I was very disappointed at how the ICU unwrapped the bandages on Lance's legs which invited an infection, and how Lance was livid because of the incident with the newbie nurse messing up his IV line, and the lame excuse that his pain medication was not "transferred" to the floor, and now, the casual attitudes of the rounds doctors in discontinuing the patch cold turkey, needlessly adding to his discomfort. And for the cherry on top, we complained that several times nurses and doctors here have asked if I was Lance's social worker or professional caregiver, because I guess the notion of a black man being married to a white woman in this small rural town called Manhattan is beyond the scope of the staff here. I finally brought in 2 framed wedding pictures for Lance's room so I wouldn't have to answer the questions anymore. One doctor even thought Lance's 74 year old mother was his wife. That apparently made more sense to him than the option of me being his wife. After a while we started joking about it and his sister said they were going to get me a name tag for me to wear that said "WIFE" , and they would wear "SISTER" tags because doctors were regularly turning to talk to them instead of me. I understand how some folks may be confused initially, but to assume I am his social worker is fucked up in plain English.

The Patient Rep listened and agreed with our concerns. She promised to follow up with the ICU nursing manager, and Dr. Comenzo appeared in our room within the hour. He is such a great guy and he sets the bar very high in terms of competence, compassion, and common sense, something I fear some of his colleagues lack. He reassured me that Lance is in good hands, and that the rounds doctors ultimately did the right thing by resuming the patch. He is empathetic and didn't try to persuade me to feel or act differently, but he felt I should know that sometimes issues arise when patients get transferred from one unit to another, and even though it appears to me that some wrong decisions were made in both the ICU and on Lance's floor, ultimately Lance is getting the attention he needs to recover from the blood clots and get on with the treatment for amyloidosis. Once I got things off my chest, the conversation turned towards the future, and Dr. Comenzo wants Lance to begin a drug called Revlimid in a few weeks, once the FDA approval for amyloidosis is secured. It is used now to treat Multiple Myeloma and has a decent response rate. As usual, I felt much better after talking to Dr. Comenzo.

~Lisa

Slow Sunday

2006-05-14T21:22:00.000-04:00

Lance is doing well considering the events of last week. His blood pressure is a bit low again and the doctors are watching it carefully. When it is low they do not like to give him too much of the diuretic Lasik, and this is a problem because he needs to get more fluid off. They have stepped him down to 2 liters of oxygen which is very low, but his blood oxygen levels are still good even after the step down. The goal there is to get him back to being an occasional oxygen user, rather than a constant one. He has a small hand held device he uses to strengthen his lungs that measure the strength of the his inhalation. He can use it only for a few minutes at a time, but its a start.

He is still very weak, especially in the legs, and needs much assistance, but he transferred from the hospital bed to a chair yesterday and today, and the doctors are pleased with this development. The transfers completely exhaust him and to get a good idea of where his physical strength is at, picture that getting out of bed and taking one step to a waiting chair is the most demanding physical challenge you can endure. Everything at this point is a baby step, but one needed to move closer to getting home. The staff here is helping to keep him moving and will not let him lay complaisantly and give in to the the fatigue and weakness. Lance has a date with the physical therapist tomorrow to begin strengthening the muscles that have atrophied from a months of sitting, followed by a week in bed.

For the past few months, Lance's legs have been "weeping" from the swelling of fluid in them. After a while gravity and the pressure of the fluid creating small openings in the skin and fluid finds its way out, streaming slowly down his leg like a constant tear drop. At home, I had been keeping the area sterile and covered with antibiotic ointment and gauze, and the openings were not healing, but they were not getting worse. However, when he arrived at the ICU last week, a nurse took off the bandages and told me that it was better to let the leg air out and placed some clothes under his calves to collect the dripping fluid. I questioned this because it seems to me that as a stem cell transplant patient, an open wound should be covered so as to not invite an infection that may be difficult to treat with Lance's compromised immunity. The nurse assured me that airing out the leg was necessary, and the nurses that relieved her throughout the week would follow the same procedure, even though the original nurse never discussed it or cleared it with the ICU attending physician. It seemed backwards to me, after all even a small child can tell you that you put a band-aid on a boo-boo, but they were ICU nurses...at Sloan Kettering...I figured they know something that I don't and I should trust them. I was wrong. The leaking area is much worse and has doubled in size, and yesterday the area was very red. I showed it to the doctor who order a swab culture of the area, and sure enough there is an infection at the site. They are doing another test to find out exactly what type of bacteria has moved in, and they have now resumed medicating and wrapping up the area. I am pissed. If this creates another complication for Lance and keeps him here longer I will get seriously mad, and believe me, I am looking for someone to lash out and blame for all of this, so watch out! Granted, the ICU did save his life Wednesday, but this new infection is the result of a needless, and frankly stupid decision, one that can be life threatening in a patient with Lance's weakened immunity. We are seeing a social worker tomorrow to discuss both the IV incident from Friday night and this leg wound. Time to hang up the niceties and become the squeaky wheel.

Lance had visits today from his family and we had a nice Mother's Day together. He also had a visit from an old friend and band mate, Charlie Burnham from Sonny Sharrock's band. Lance hadn't seen Charlie in a long while and was so glad to see him. Some had asked about an address to send a card or something and the address is:

Lance Carter

Room 807

Memorial Sloan Kettering Cancer Center
1275 York Avenue
New York, NY 10021

I think because of Lance's weakness and low BP he may be here through the next week or so. We'll see... Thanks again to everyone for the well wishes and messages.

~Lisa

Private Room

2006-05-13T09:52:00.000-04:00

Lance was finally tranferred out of ICU and to a private room late last night. He is once again on the 8th floor Bone Marrow Transplant unit (which is gorgeous), and he, and I, are very happy to be out of the ICU ward. There was no privacy at all, and Lance was getting aggravated. Right before the transfer his nurse, who had just come on duty, decided to change one of his IV lines before sending him upstairs. The IV site was a bit leaky, but still functional, and the day nurse had decided to leave it as is and let the team on the 8th floor re-set the line. The new nurse, however, thought she'd get a bad rap upstairs for the leak and decided to have it changed. A newbie nurse was sent in to do this and admitted to Lance that she had never done one before. I wasn't with him at the time, so I cannot vouch for the all the facts, but it seems unlikely that a nurse assigned to the ICU unit at Sloan Kettering would have never set up an IV line before, but this is what Lance says happens. Lance said she had a hard time finding his vein and stuck him a few times before he called for the nursing supervisor. He had a few choice words for them about sending in a newbie, and he finally took out his frustration on someone. I'm happy I wasn't there because I would have tried to be the peacemaker, and frankly Lance needs to be more assertive and take some control of his care, rather than letting me speak for him all of the time. I did remind him that these folks literally saved his life on Wednesday and that sometimes people, have a bad day and to not be too hard on the other nurses that will care for him in the coming week, but these nurses hear from cranky patients all the time and they did not let Lance's ranting bug them too much. Once he got up to his room he calmed down. The one good thing about his getting all worked up was his BP went up a bit, something he needs!

The ICU doctor talked to us yesterday and said that Lance's condition, while stable, is very serious, and should he have another episode where he cannot breathe, he will likely need to be put on a life supporting ventilator. There are many pros and cons to allowing this procedure, and he recommended we have a frank talk with Dr. Comenzo and to put Lance's wishes down on paper. We spoke with a social worker who helped us fill out the appropriate forms, and they are now on file with the hospital should Lance have trouble in the future. We were told it would take upwards of 6 months for the clots in his lung and groin to completely dissolve. I was surprised it would take that long, but I've learned not to assume I know everything! So far, even with the clots, he is still green-lighted for the second stem cell transplant in July.

We are still waiting for the morning round doctors to arrive. We expect to be here at least another week, but now that we are in a private room, it will be much more tolerable. Lance's room has it's own a flat panel TV and desktop computer with hi-speed internet access, and so I will be able to update the blog regularly. Lance is a bit tuckered out from the may visitors he had Thursday for his birthday, but in a few days he will be up for more company. The good news is visitors do not need to suit up in the isolation gown, gloves and mask because Lance is 6 months out from his first stem cell transplant and is a less risk of infection.

Many thanks for all the good wishes and phone calls. I cannot return all the calls immediately, but we hear them and they give us great comfort that we are not alone during this insanity. I know there is a lot of praying happening on our behalf, and y'all must have some pull with the man upstairs because even the ICU team was amazed at his progress. Nurses who didn't even treat him stopped by his bay to tell him how much of a scare he had given them, and how much better he was looking. It must have been some scene that morning, and even though his condition is still very delicate, the way Lance has stabilized is a blessing.

More later on....
~Lisa

Happy Birthday to the Comeback Kid

2006-05-11T12:46:00.000-04:00

Lance received the best birthday present of all today, news from his doctors in ICU that he is improving and they think he will be able to leave ICU on Friday and move to a regular room. I say this cautiously because we've had the rug pulled out from under us once already this week, but it looks like Lance has dodged this bullet and is out of the woods. He is still receiving medication to dissolve the clots, and to slow his heart rate, and he is responding to both. His BP is holding steady at around 110/60, and his breathing has improved so much they have taken him off of the high flow oxygen mask and he is back using a nasal canula to deliver the oxygen he needs. This change in equipment is very therapeutic because the new set up is not so scary and it lets Lance know that he is improving. They have also taken out the central line catheter they inserted when they feared he needed to be on a ventilator (a different catheter than the one that popped out on it's own earlier this morning), another sign his condition has improved. They are transitioning some of his medications from IV to pills, and Lance has received the go ahead to begin eating again. He knocked out a bowl of oatmeal this morning, and the doctor said he is allowed to have some birthday cake (so long as it is low sodium!- imagine that, a salty cake - ew!). His family has begun to arrive and all are relieved by the good turn he has taken. We expect him to be in the hospital for maybe another week, and I will post regularly. Lance is awake and alert, and happy to be doing better on his birthday. His stubborn streak is serving him well! More later on....

~Lisa

Wake Up Call

2006-05-11T05:09:00.000-04:00

The night nurse was very cool and allowed me to sleep in Lance's bay tonight with him. All was peaceful and calm until 5am when Lance's arterial catheter moniter, which is placed in his groin, came out and Lance awoke to a bed full of blood. This catheter is placed into an artery to give constant blood pressure readings every 5 seconds. It is much more convenient and easier on the patient than constantly using a BP cuff. We didn't know anything happened until 3 nurses busted into the room because their monitors went crazy, but Lance and I were totally unaware and didn't see the blood under the bed covers. When the nurse pulled the blanket back - well - it was some sight to see. They got to him very quickly and he is in no danger of bleeding out, but it did rattle us both a bit. They asked me to step outside to the waiting room so that they could replace the catheter and clean up Lance and change the bed linens. Other than this latest drama, Lance's vitals are stable and am anxious to hear what the doctor says after the morning rounds. The doctors have not been allowing him to eat because if he needs to go on a ventilator it is best that he have an empty stomach. When they insert a breathing tube, a person's gag reflex often kicks in, and if vomit makes it way into the lungs it is very dangerous. So until he is out of the woods he will get no food or drink, only ice chips. We are hoping he will get clearance to eat today so that we can give him some birthday cake. I will post more after the morning rounds.

~Lisa

Critical

2006-05-10T22:27:00.000-04:00

Dear family and friends ,

Lance's condition has become critical. He had a bad episode this morning and was unable to breathe. It is confirmed that he has a blood clots in a lung and his groin, and his lungs have begun filling with fluid. Since they still had not been able to find a bed elsewhere in the hospital he was still in ICU when this happened and the team there was able to jump in immediately. However, since Lance's heart is a damaged by the amyloid hardening the left ventricle wall, he is in in greater danger of congestive heart failure. He was very close to needing a ventilator to breathe for him this morning, but thankfully they were able to avoid that. He is on a strong oxygen flow now and is more stable. Doctors are giving him medications to slow his heart rate to give his heart sufficient time to fill with blood to pump back into his body. His heart had been beating too fast to give it time to fill properly, leaving his blood in his veins longer than typical, inviting things like blood clots to occur. ICU doctors told us this morning that the next 24-36 hours are crucial, and if his heart function does not improve, the prognosis is very poor. He was preparing me for the worst. His vital signs have improved a bit since this morning, so I am more hopeful now than I was earlier today, but we did call in all of his family to see him today. I went home last night believing everything was fine and expecting him to be in a regular room when I returned this morning. Instead, we walked into a nightmare, and I am more cautious and skeptical about his being "stable" than I was last night before heading home for the night, so I am staying here tonight again and will camp out in the waiting room. This time I will have company as 2 other families are staying here, too. This room is not a happy room, but it is therapeutic to be around other people who are praying for their loved ones, like I am. I will post more tomorrow as I get more info from the doctors. Lots of love for all the well wishes and phone calls. Lance knows how loved he is, and I am sure it gives him great comfort. Tomorrow is Lance's 51st birthday.

~Lisa

Ultrasound

2006-05-09T21:57:00.000-04:00

The ultrasound results are in and Lance definitely has a blood clot in his groin. They also performed a CT scan to see if any of the the clot broke off and traveled to his lungs. We should have the CT results in the morning. The ICU doctors are also doing more tests to see if he has a touch of pneumonia. They think his troubles could be a combination of both. Lance is still in ICU, but is ready to go to a regular room as soon as a bed opens up. Apparently, the house if full! Since I cannot stay with him in ICU overnight, I came home and will return in the morning with Karen, Lance's sister. This gives me a little time to collect some more things to bring to the hospital. I always have an overnight bag ready to go to the hospital with enough clothes for both of us for 2-3 days, but Dr. Comenzo said Lance will be at Sloan for about week receiving blood thinning medication to dissolve the clot. One theory of the clot development is that Lance sits for long periods, but there is not much we can do about that too quickly, so Lance will probably be on blood thinners for a while if not forever. The good news is that Dr. Comenzo told us this will absolutely not prevent Lance from having the second stem cell transplant, which is a relief. So we will tough it out for a few more days in NYC, and hopefully be home by the middle of next week. Lance will have to spend his birthday in the hospital on Thursday, May 11, but at least he'll have the nurses to gush over him. His family and I plan to get him a birthday cake and make a day of it! All birthday wishes and visitors are welcome!

Back to "Hospital X"

2006-05-09T15:27:00.000-04:00

Just a quick note to tell everyone that Lance is back in the hospital. I took him to Sloan Kettering on Monday because he was very short of breath and sweating profusely. He was experiencing heart failure. He is stable now and is still in ICU, but they are moving him to a regular room later today (Tuesday). They do not know what brought it on, but theorize it is a touch of pneumonia that has been masked by the steroids, or a pulmonary embolism or a clot somewhere else in is body. He is being tested for all and is doing much better. His blood pressure is up from 70/50 and is now at 100/60. His pulse ox is better, too at 99 while on oxygen. He will probably be here another day or so. I hope he is home by his birthday on Thursday. I am OK and Karen was with me most of Monday and is back today with Lance's mom, Ruth. I slept here last night but if it looks like they will keep him more than one more day, I will probably go home tonight. I didn't sleep to well in the chair in the ICU waiting room. They have more strict visiting and I cannot stay in the ICU ward overnight We are waiting to hear if this development will cancel or postpone the second stem cell transplant scheduled for July. Dr. Comenzo and his staff were shocked to hear of Lance's trouble since his FLC numbers have been falling so consistently. If it is pneumonia that started this latest episode, it is not a surprised because even though Lance was doing so well, his immune system is still very compromised. I guess the good news here is he held out for 6 months without getting sick since the transplant, and if pneumonia was going to come his way, at least it was after 6 months instead of 6 days or 6 weeks when he would have little immunity to fight it. He would have been here for weeks instead of days. I will keep the blog updated, but we do expect Lance to recover soon and be home in no time.

~Lisa

Day 143: Cinco de FLC

2006-05-06T00:57:00.000-04:00

Day 141: .........1 ~ 1 ~ 4

2006-05-03T21:38:00.000-04:00

Lance's FLC ratio from his blood test on 4/19 is 114mg/dl! This is down from 198 in March. This is great news for Lance as he heads into the second AuSCT in July. He had a good day today, mainly because he is in the middle of a Dex pulse. The steroids always pick him up and he was pretty awake today. Of course, he is napping right now! But it is a given that he will nap sometime throughtout the day, and today he held out until 9pm. Lance was feeling good the day we went to the Yankee game last week, but the cold night air eventually got to him and we left the game early. Lance had on at least 3 layers under his coat, scarf, hat and fleece blanket, but the wind was whipping and I could see he was ready to get inside. He gots his thrill, next he wanted heat! The scooter and van worked out nicely, and Lance became pretty good at navigating the river of people that mill about at Yankee Stadium. When it's warmer, I hope we'll get to another game before Lance heads back into the hospital. He'll need to avoid places like Yankee Stadium after the second procedure, as his immunity will take a nose dive again. We'll try to take advantage of his up days to get out more before he becomes housebound for aother few months.

We postponed our trip to Florida in August and switched the reservations on the Auto Train to Thanksgiving time. That's the first goal - for Lance to have the stamina and strength to travel by mid November. We take the Auto Train all the time, and we'll be able to load the van and scooter onto the train. The beds are comfy and Lance handicap accessible room will have a private bathroom and is big enough for the two of us to hangout and watch movies together before his bed gets turned down. My single room will be just a few feet away from his. Even though Lance's room has an upper berth that folds out of the wall, I hate sleeping up there because it is too close to the ceiling of the train, and I get claustrophobic. It's like sleeping in an MRI machine! Not pleasant! So with each of us in our own bedrooms, with lots of space between the bed and ceiling, it should be stress free and easy traveling! Barring any complications or set backs, we should be able to go by November. Here's pictures from a trip we took on the Auto Train a few years ago. These show a single room like I will have. The two bench seats fold down to make a bed, and then they put another mattress with fresh linens on top of that. Lance's room spans the width of the train because it has extra room for a wheelchair or scooter, and the accessible bathroom that has plenty of railings to hold onto as the train rocks. Since the dining car is on the second story of the train, and the staircase is narrow and pretty steep, we have our meals which are included in the sleeper car price, brought to the room. The menu offers 4 or 5 good dinner options that are plated and served with silverware and complimentary wine. I always sleep good on the train. I'm not sure if it is the rocking or the complimentary wine!

~Lisa

Day 130: Congressional Testimony

2006-04-23T14:21:00.000-04:00

I am posting the transcript of testimony resently presented in front of the US House of Representative Subcommittee on Labor, Health & Human Services. It is an appeal for funding for the Amyloidosis Treatment and Research Program at Boston University School of Medicine and Boston Medical Center (where Dr. Comenzo began his specialty in amyloidosis before moving to Sloan Kettering). The testimony is given by Mr. Terry Peel whose wife, Ann, suffers from primary amyloisosis and who has undergone 2 stem celle transplants as Lance is about to do. The testimony is an excellent and brief summary of the disease designed to enlighten members of Congress who, like most Americans, have never heard the word amyloidosis before. From reading Terry Peel's bio at the end of the testimony, it is evident why he can craft such a concise message to influence this Subcommittee. We are lucky to have him on our team.

Day 129: Midsummer Plans

2006-04-21T20:38:00.000-04:00

Lance saw Dr. Comenzo on Wed., 4/19 and it was a great appointment. Dr. Comenzo was very impressed with Lance's progress. He order a blood test for the latest FLC number, but as of today the results are not in.

Lance has lost 17 lbs since his last Sloan appointment on 3/22. Dr. Comenzo believes the weight loss is a combination of fluid and, possibly, amyloid regressing from Lance's soft tissue. While Lance's tongue is still over-wide and enlarged, it is a tad bit softer. He has episodes when additional fluid collects in his tongue (when he lies down for instance). However, the fact that his tongue is now malleable enough to expand and and contract with fluid, is possibly an indication that the amyloid that once stiffened his tongue, is regressing. Lance has also loosened up a little...literally! He is standing a bit straighter and can stand for longer periods - all signs that the starchy protein is slowly leaving. While this is all excellent news, progress is still excrutiatingly slow, and Lance's daily quality of life is still extremely altered from his life previous to this disease. It frustrates Lance to hear me tell people he is doing better, because really, for him, little has changed. His progress is mainly on paper at this point, and despite these few signs of improvement it is a daily effort to remain optimistic. However, thanks to medications like Effexor, Lance is able to feel more optimism, which will only help him fight disease with more determination.

This last appointment with Dr. Comenzo, though, was definitely cause for optimism. To see Dr. Comenzo eyes, full of hope and assurance, really comforted Lance. He told Lance that he is responding to the Dex as best as one could possible hope. Pre AuSCT his FLC # was off the charts at 2200. Post AuSCT it came down to 880 - still way too high. Then in the 2 months of recovery post AuSCT, the FLC rose again up towards 1500. Crap! To bring the number down again, Dr. Comenzo determined that Dex alone was the best place to start for Lance. Since Lance's blood pressure was so low, he would not be able to tolerate the other more potent drugs on the market. But in the end that didn't matter because after 2 months on the Dex pulses, Lance's FLC came down to 198. Dr. Comenzo was amazed at how significantly Lance's number dropped and said a second AuSCT would be the most aggressive way to terminate the mutation causing the disease. The first AuSCT was for the Defense. Do it, or die. The second AuSCT is for the Offense. Do it, and put the FLC's on their knees! (hey that rhymed!) It really seems like a no-brainer, considering Lance was out of the hospital in 2.5 weeks for the first one. For the first time at this last appointment, Dr. Comenzo started talking in terms of "years" with Lance. Prior to now a prognosis was never affirmed. So much relied on how Lance would respond to the few valuable medications that treat amyloidosis. Now we know - the AuSCT and Dex work for Lance. Later on when Lance is stronger, after the second AuSCT, he will probably try Revlamid, which is sort like Thalidomide Lite. They are made by the same company and Revlamid is related chemically to Thalidomide, but apparently has fewer troublesome side effects. Lance had a rough time on Thalidomide, but hopefully, when he gets stronger he will be able to tolerate this new form of the potent drug. Dr. Comenzo predicted that Lance's recovery from the second AuSCT will be much more rapid (again, 'rapid' is relative in the amyloid world), and that Lance would be up and feeling much better by Christmas. It will take upwards of 2 years for the amyloid to regress and to see measurable improvement in his heart function. Of course with another AuSCT we'll have to go back to our germ prevention lifestyle, but that is an easy price to pay!

We have decided that Lance will have the second stem cell transplant in mid- July, once again at Sloan Kettering in Manhattan. My job is crazy through the second week of July, but after that I have a lot of down time that will be perfect timing to help Lance recover after his discharge. Now that we know what is in store, it's not so scary. Besides that, this procedure gives us the best and most aggressive treatment option, and Lance is ready to do it this time. Lance will continue the Dex pulses until just before his hospitalization in July. He has over 12 million stem cells on ice in reserve, so there will be no harvest phase this time. He will be admitted, given the chemo followed by the stem cell infusion like last time. Then we wait a few weeks for his vitals to rebound and his blood counts to rebound, and barring any complications, should be home before the month's ends. Our August trip to Florida must be postponed, but we'll go down for Thanksgiving instead.

Lance started a new medication today called Flomax. Apparently...his flow...was too slow. Amyloid has been known to effect the prostate, but Dr. Comenzo didn't think that was the problem. He order a PSA prostate cancer test which came back negative and prescribed Flomax. The Flomax is doing the trick and works very well, so I guess Lance is experiencing what many 50 year old men experience. He must have an enlarged prostate. The complicating factor for Lance, is that the longer it takes to urinate, the longer he has to stand at the toilet. The longer he stands, the more pain he feels in his spine, and the more winded he becomes. But the medication helps a lot and he can now finish his business before he needs to find a seat.

My parents arrived from Florida with their mini-van today. We are the proud caretakers of a red 1997 Chrysler Town and Country mini-van with gold rims! Very Jersey! They also bought us a portable ramp that I will use to load the motorized scooter into the van. Lance's sister, Beth, and brother-in-law, Jim, brought the scooter over last weekend and Lance took it for a spin around the apartment. We haven't taken the scooter outside yet, but now that we have the van we can start making plans. I practiced the scooter load-in/load-out a few times, and think I have it down. We'll be fine.

So I hope the long delay between posting has been worth the wait. I like passing along the good news much better than the bad. I'll update next after our Yankee game this coming Wednesday. I'll post a few good pix taken from behind home plate. We are very excited to go!

~Lisa

Day 114: ..........1 ~ 9 ~ 8

2006-04-06T21:54:00.000-04:00

I contacted Dr. Comenzo to update him on Lance's weight. Fluctuations in weight are one way they gauge Lance's fluid retention, and Dr Comenzo was thinking about increasing Lance's lasik dosage to help rid him of more of the fluid that he lugs around. Lance was instructed to eat a low sodium diet to see if that helped with the swelling. I weighed Lance yesterday and he has lost 10lbs since March 22. Thing is, neither of us really see a visable reduction in his edema, but the scale isn't lying, and Lance has been eating OK, so I guess it is water weight that he's lost. Or maybe it's that I can't see a change because I see him everyday. Dr. Comenzo replied to that he wanted to go ahead an increase the diuretic anyway to get Lance down to his "dry weight."

Then Dr. Comenzo imparted some very promising news. He told us that Lance's lamba free light chain ratio (FLC) test of 3/22/06, the index that tells us if his body is capable of over-producing the bad sticky amyloid protein that is damaging his muscles and heart, is now 198! This is a great sign, because it means Lance is responding to the dexamethasone steroid. "Manageable" FLC levels for an AMY patient is below 200. Pre-stem cell transplant, Lance's level was a whopping 2200 and came down to 880 after the treatment. The goal of the dexamethasone is to bring the FLC down as low as possible, then, possibly, a second stem cell transplant will destroy the very last mutated cell. What this does is buy Lance's body time to process and expel the amyloid currently being stored in his muscles, bones, tongue and heart, reversing the damage, and restoring some normal functioning to his effected systems. His FLC may be even lower now that he has resumed the dex pulses, and we will know more after his next test on 4/19. With his FLC below 200, he stands a good chance of snuffing out the mutation that started this long journey. Nature is nature, and the mutation may occur again down the road, but the years this treatment may buy Lance are so valuable and precious, we'll take them now and worry about later on, later on. However, his response to dexamethasone might also mean that it, or a similar steroid, may be useful as a maintenance drug if the FLC began to rise again in the future. I do see some improvement in Lance as he rebounds from the stem cell transplant. He still has good and bad days, both physically and emotionally, but I do see a fight in him that was asleep through most of his hospitalization and recouperation.

We'll put that fight to the test when we head out for our first big outting since Lance's release from Sloan in December. To celebrate Lance's 51st birthday we are going to a Yankee game later this month, and we found (wheelchair) seats right behind home plate on Ticketmaster of all places! Face value, baby! Maybe our luck is changing!?

~Lisa

Day 112: Play Ball!

2006-04-04T10:34:00.000-04:00

Lance & I seem to have found our groove. We wake up and I prepare his morning medicines, crushed up in applesauce because they are many and easier to swallow this way with his tongue problems. He gets all of his sport updates watching ESPN, and now that baseball season has begun, he has a lot of scores to keep on top of! He is very excited that we a free week of Major League Baseball from around the country on our cable system for the first week of the baseball season. The Yankees pounded Oakland last night in the season opener and he was very happy! The picture to the right is Lance at Yankee Stadium in October 2005. We went to a divisional Playoff Game and sat in Monument Park. While Lance gets his sports update, I get started checking my work email. I get dozens a day that need a response, but I am grateful that this is something I can do from home and be with Lance. I currently have 2200 message in my inbox since January (and none of them are spam!), so you can see why it is getting more difficult to update this blog regularly!! This is my busy season, but it will begin to slow down for me in a few more weeks.

Lance's has finished his latest pulse on the dexamethasone and still feels markedly better when he is on the steroids. He endured a full week off the pills as directed by his doctor, but he toughed it out and made it through just fine. Lance has been taking another medication called Effexor to ease his anxiety in addition to xanax, and I am seeing an improvement in his mood and overall disposition. Lance has also had a few more visitors and is in a better frame of mind to receive them since starting this medicine. On thing he is still bad with is returning phone calls. Part of it, I think, is not being sure what to say to people after all this time, but also Lance has some unease about using the phone because he is hard to understand sometimes due to his enlarged tongue. Imagine having a sock stuffed in your mouth and trying to have a phone conversation. He hears the messages, though and appreciates that everyone pulling for him.

Lance's appetite is improved while on the steroids and he has become an oatmeal fan. We have made a real effort to keep his diet low/no sodium, and his latest infatuation with oatmeal has helped. I've cooked a few things for him to try, and he does, but he still prefers the oatmeal. Hey, it works for me! I am giving the man what he wants, it's has very low sodium, and the preparation involves turning on the flame for the teakettle! I can handle that! Unfortunately, the diet has not helped his edema at all, and his left hand and arm have filled with fluid again. He has also sprung a few leaks in his legs which are releasing fluid through small spots. Dr. Comenzo told us this is common with as severe edema as Lance has in his lower extremities. The fluid drips down his shin like a teardrop. We keep those spots covered and clean with antibiotic ointment because we are fearful that viral or bacterial germs could enter his body through these openings.

We go back to Sloan Kettering on April 19 to see how the dex is effecting his lambda free light chain ratio. The talk around the office is still of a second stem cell transplant, even if his numbers come down below 100. The idea is to put the flame out altogether - no smoldering permitted, and Dr. Comenzo said it is important to be this aggressive in the first year of the disease, and so we'll do what we have to do. We'd both rather bunch all of Lance's treatment into the front end of this journey so that, God willing, we may relax and enjoy the years that will follow. We have plans to go to Sarasota, Florida to visit my parents for almost all of the month of August, but a second transplant may tamper with those dates. If necessary we'll push the siesta back to September. Either way...we're going! We both need a vacation, and my parent's house is comfortable with a pool and a nice guest suite for an extended stay. They are bringing their van up from Florida in a couple of weeks for us to use with the scooter. We are really looking forward to getting out, and these two weeks waiting for the van seems so long!

Are they here yet????!!!!!

~Lisa

Day +101: Rollercoaster

2006-03-23T17:39:00.000-05:00

Well, the rollercoaster ride continues. Lance has his good days, especially when on the steriod medication dexamthasone, and bad days when he is off it. He typically takes the medication for 4 days on and 4 days off, but next week he will be off it entirely. Part of the plan includes a week off the drug at the completion of each month. Lance is not looking forward to it, but I will do my best to keep him comfortable and keep his anxiety under control.

His doctor appointment at Sloan Kettering yesterday was fairly routine, but Dr. Comenzo told Lance that even if the dex brings his bad proteins down below 100 (from 2200 before is first stem cell transplant) that a second stem cell transplant is still a main option to really put the disease on its knees. Apparently to improve his prognosis it is most important to get rid of as much of the bad cells in the first year after diagnosis, and a second stem cell transplant is the best treatment they have so far. It will be really tough to go back to the beginning again. Lance is only now starting to come back around and resemble the man I married a year and a half ago. His sense of humor has kicked back in and it's great that he's been able to laugh again. Although a second stem cell transplant is the best treatment option for him, going back to square one will be difficult. We'll know more after the next appointment on April 19.

A main concern of Dr. Comenzo's is Lance's sodium intake. It is contributing to the edema (fluid retention). For so long Lance was not eating, that it didn't matter to me what he ate, so long as he ate something. But now that the steroids have brought back his appetite, I must do more to prepare no-sodium meals for him. Dr. Comenzo said to try a no-sodium diet for 10 days and if Lance does not lose a few pounds of water weight we will consider increasing his diuretic dose. Problem with that is diuretics lower blood pressure and Lance's is already low, so the ball really falls in my court to transition him to this new diet and hope that it helps. I think it may be time to buy a food processer.

Lance has heard from some old friends of late and he is very touched by the sentiments. He plans on returning the email he has received in the past few weeks as soon as I have the time to sit and type his respones for him. A typist he is NOT!

On a positive note, a good friend recently brought to our attention a review in Guitar Player magazine of Secret Life, the latest recording of Terraplane, Elliot Sharp's edgy blues band. It was recorded last year and is the last release Lance appears on before his illness interrupted. His last tour of Europe was in support of this record in May 2005. It's a great review! Way to go, baby!

~Lisa

Day +90: 3 months

2006-03-13T20:31:00.000-05:00

Lance is doing much, much better. The side effect of the dexamethasone are finally under control and the past few days have been smooth sailing. Lance is currently on his third pulse of dex and is tolerating it very well now. His anxiety is in check thanks to xanax, and his shortness of breath is much better. He uses the oxygen sporadically, but with his anxiety eased, he is breathing more freely. Lance has been taking extra diuretic and has lost some of the fluid he had been retaining. We can see the most visible difference in his left arm, which was so swollen his hand resembled a blown up surgical glove. It is now normal size, although thin, and the tendons and dimples of his knuckles are clearly visible again. Lance can now sleep while lying down instead of sitting upright like he's been for a few weeks, and he is much happier and better rested.

Lance's appetite has come back. It's probably the steroids, but the doctor told us his appetite and sense of taste would return around 3 months, and today is Lance's 3 month mark from his stem cell transplant day. He is eating more and more and lately has really enjoyed tofu. It is soft and packed with protein. I picked up some Asian and Indian prepared sauces to saute it in, and Lance has been going to town on it. He has easily doubled his caloric in take over the past 4 or 5 days, and his energy level and disposition are improving. Let's hope this course of dex works to bring Lance's FLC proteins down, because I think he may be able to manage the drug long term. We'll know more on March 22 when Lance has his blood tests again.

We receive more good news last week. The charitable organization MusicCares has approved us for financial assistance. Like the Jazz Foundation, they will help us with our mortgage as well as some other expenses. They also have contacted two other music organizations who are interested in helping us and have passed along all of our paperwork, saving me the task of compiling it for each and every application. The Musician's Foundation and Sweet Relief are in a holding pattern and when the MusiCares assistance expires the other organizations will step up. All of this is a huge help and it assures Lance that the contributions he made as a musician for 30 years still have value and meaning.

We will soon have a van and scooter for Lance to get out and about when the weather warms up. My parents are lending us their van and driving it up from Florida before Easter. The scooter is a loaner from Lance's brother-in-law, Jimmy, whose father passed away in November after using it for a few years. Lance rejected the scooter when it was offered to him last fall because at that time he didn't want to deal with the fact that he needed that much assistance. But after being hospital and house bound for the past 3 months, he is really looking forward to getting the set up together so that we can get out more. He now sees the scooter as something that will help him, not as a stigma. So when yo see Lance out at a gig or party, be sure to tell him how jealous you are of his ride! We are already talking about getting jackets made!

Here's to happy days...
~Lisa

Day +84: Oxygen

2006-03-07T18:31:00.000-05:00

Lance is still having trouble breathing deeply and becomes very shortwinded when exerting the slightest. Most disturbing thing for Lance is his inability to catch his breathe when lying down. This is why he has been sleeping upright in a chair for the past week. The steroid dexamethasone is causing more fluid retention which is effecting Lance's breathing. Complicating this is the nervousness caused by the dex and so Lance has been having a lot of anxiety over his breathlessness, which is very understandable. As an asthmatic, I can relate! When you can't breathe deeply, you panic, and the panic causes more breathlessness which prolongs the anxiety, and so on. It's a vicious cycle.

Finally last night he became especially anxious, so I took him to the Urgent Care Center Sloan Kettering at midnight. Lance's mom and sister drove in from NJ to meet us and I am very grateful they came. Lance was evaluated at Sloan by the same ER doctor who pumped his stomach back in early January when he had a bowel obstruction, and he remembered Lance. He promised that he would not be putting any tubes down Lance's throat this time. He was very nice. This time Lance thought so, too! The doctor did some blood tests and determined that Lance was in deed carrying too much extra fluid, probably from the dex. Lance's main complaint of being unable to lay down and breathe easily, is apparently a classic symptom of excess fluid, although there was no fluid in his lungs. It is the fluid stored in his tissue that is causing the distress, and the amyloid deposits are preventing Lance from expanding his ribcage sufficiently to get a deep breath. It's like his ribcage is wrapped tight in a sheath of amyloid fibers which look a bit like burlap under the microscope. Not very pleasant. Another amyloidosis warrior named Tony Fazzone recently posted a great description on his blog about why and how the excess fluid builds up in amyloidosis patients.

The doctor gave Lance some oxygen and IV Lasix, the diuretic he takes daily, and after 6 hours and peeing a quart of urine we got home at about 6:30 am. We slept a bit and then I got in touch with Dr. Comenzo and had them call in a prescription for an oxygen set up at home. The oxygen arrived at 4:30 pm and Lance is much, much better. Just knowing the oxygen is in the house gives him relief and a sense of security. So far he doesn't require it all the time, but he uses it sporadically. It will help him catch his breath better after major exertions like showering, which is the hardest thing Lance does these days, and with that he is sitting down on a chair in the shower. This is a long way from his days of playing 3-4 sets a night with his soul/funk band REDHOUSE.

Lance will be off the dex for the next 4 days so things should improve a little bit. I am still working from home and am very busy, but grateful I don't have to choose work over being at home with Lance during this rough patch.

~Lisa

Day +77: Xanax

2006-02-28T21:36:00.000-05:00

As mentioned in my previous post, the dexamethasone Lance is taking to try and bring down the lamba FLC protein in his blood, makes him nervous and anxious. Dr. Comenzo prescribed ativan to help Lance with his overall anxiety, but unfortunately the ativan had the opposite effect on Lance and actually worsened his anxiety. I spoke to Dr. Comenzo's nurse, Alice, and she didn't sound surprised. I read up on ativan, and in combination with certain drugs it can, in fact, do exactly the opposite of what it's supposed to, aleve anxiety. Lance has taken ativan before with no problems, especially while an in-patient at Sloan Kettering, but combined with the dex it sent him into a terrible panic attack Saturday night. Afraid to give him any other medication we waited it our a few hours while I reassured him that he was OK and that it was the medication making him feel this way and that it would stop soon. Finally, I gave him some xanax from my personal Rx (thank God for xanax), and it did the trick. Alice is sending me a new Rx for xanax, and I will give Lance small doses a few times a day to keep him even-keeled while on the the dex.

Lance is concerned about lying down because he is fearful that his tongue will block his airway. I watch him sleep all the time, and he can breathe OK, but the panic attacks bring on shortness of breath and I think he is getting himself worked up. He's taken to sleeping in a recliner while sitting upright. I slept in the living room with him for two nights to ease his anxiety, but my back began to ache on the floor (we don't have a sofa-ugh!), so I bought some bed wedges and set him up to sit upright in bed. This way I can sleep with him and be in a bed, and he has the upright support he needs to feel relaxed enough to sleep some. So far it is working out OK, but he does wake up a lot and I sleep with one eye open. I usually take a sleep aid but I haven't been because I am afraid I won't wake up if he goes into a panic and needs me. I am working at home this week to be with him and ease his anxiety. I am so fortunate to be able to do this, and so far I've been able to keep up on my job tasks while he naps off and on.

Today was Lance's first day off of the dex (he takes it 4 days on then has 4 days off). He is more tired and a bit more achy, but Lance has taken only one morphine rescue since Saturday at 4pm. Part of it, he admits, is fear that the narcotic mixed with the dex will cause more panic, but also, dex is a potent steroid and it helped with his pain. Alice confirmed that's probably what's been happening.

Dr. Comenzo is concerned that Lance may not be able to tolerate the dex, so it is important to find the right balance of sedatives to ease him through the treatment. There are not a lot of other treatment options on the horizon, so we must fully exploit those that Lance can tolerate.

~Lisa

Day +74: Dex

2006-02-25T22:48:00.000-05:00

The past few days have been rough. Lance saw Dr. Comenzo on Wednesday and we learned more about the next course of treatment. We know that the stem cell transplant yielded a partial response and brought his lambda free light chains (FLC) down from 2200 to 850. To bring it down further, Dr. Comenzo had considered a drug called Velcade, but on Wednesday he told us that because of Lance's perpetual low blood pressure (80's over 50's) Lance is a poor candidate for the treatment. This was a disappointment because Velcade has a very high response rate and we were hoping that it would do the trick and bring his FLC down to a near normal range. Instead of Velcade, Dr. Comenzo wants Lance to take a steroid called dexamethasone for 2 months, and then we will reassess the situation. Dexamethasone can also be administered with thalidomide, but Lance was on that once before and had a rough time handling it. His low blood pressure also prevents him from taking thalidomide again. If Dr. Comenzo sees that the dexamethasone is causing Lance's FLC number to trend downward, he will consider keeping him on the steroid and adjusting the dosage for the right maintenance level. If not, then Lance may require a second stem cell transplant. While this sounds drastic (and I suppose it is), Dr. Comenzo told us that we know Lance has a response to the stem cell treatment (not everyone does) and if he has the same response, meaning the FLC number is cut in half or more, Lance's FLC number will be close to normal range. Since "back-to-back" stem cell transplants must occur within 8 months of each other, we have time to try the dexamethasone for two months. Dr. Comenzo likened it to playing with the house money. In May or June, if Lance requires another AuSCT, it will be about 6 months out from his last one, so we are well within range to try another approach. Lance wasn't thrilled about having a second AuSCT, but he acknowledged that if things went similarly to the first one, it wouldn't be so terrible. The first AuSCT had him in and out of the hospital in 19 days, not the 5 weeks we had anticipated before his admission, and he said that if that is his best hope for improvement then he will do it. There are additional risks of having a second AuSCT, but not enough statistically to stop him from having another go at it. I don't know if our insurance will cover a second AuSCT, but I suppose that is irrelevant.

Lance began taking the dexamethasone on Friday, and it is making him nervous and a bit confused. He will take it for 4 days then have 4 days off for the next 2 months. He doesn't like the anxious feeling it gives him (who would), so he has needed some ativan to relax. The steroid makes his heart race a bit as well which worries him and makes him focus on his breathing. If you have ever become aware of your breathing, you know how it can be an unpleasant experience and can even make your breathing more labored. The tricks our minds can play on us!

Dr. Comenzo prescribed the ativan at my request because Lance's anxiety over his tongue has increased daily. We discussed it with the doctor and he told Lance that if he feels the tongue getting worse, or if it interferes with his breathing (it's not) or if food goes down the wrong pipe (so far it's not) then we should talk about a temporary feeding tube. As soon as Lance heard those words he began to panic. We calmed him down and assured him that it was an option that may help him down the road if he needs it, and if or when the treatment begin to take hold and his tongue shrinks, the feeding tube would be removed. This was the first time in all these months that I actually saw real fear in Lance's eyes. Through most of this experience he has been mostly mad, frustrated and annoyed at this disease. But that day he became afraid of it, and it breaks my heart to see him frightened. I play the good game and use an authoratative voice to convince him of how sure I am he will get better because it makes him feel better to think I know what will happen next. Of course, I don't. I have no idea. I am out of my fucking mind as well. We've been watching a lot of movies to distract ourselves from all these painful truths and today took a ride down to Delicious Orchards in Colts Neck to get out of the house. We bought a few pies and treats and felt better for a few hours. But tonight, Lance had a panic attack and he will not let me leave him alone. I've been sitting beside him for a few hours now and he has finally fallen asleep and is at peace. Let's hope tomorrow brings him a better day.

~Lisa

Day +69: Impeach the President Day ;}

2006-02-20T00:31:00.000-05:00

No disrespect meant for our conservative friends, you fought the good fight, but enough's enough with this joker in the White House. I didn't think it would be possible for Pres. Clinton to ever salvage his legacy after all of his stupidity, but the incompetence and treachery of the Bush administration, is actually making Clinton look like the golden boy again! Clinton should send Bush roses! Bush makes one long for the simple days of budget surpluses and embryonic stem cell research. Who cares if with that progress came interns, cigars and blue dresses!!! Tragedy gives one perspective, and the Bush presidency is a national tragedy. Time to look it in the eye and call it what it is. Bush needs to fire Annie Oakley and bring in a new VP who will run to be his successor. Let's get the debate started! Sadly, I don't see Hillary Clinton winning the White House because I believe the Republican attack machine will pull out all stops and try to destroy her beyond recognition. They'll have to pull out her dental records! I think they have some secret document or top secret plan stashed away in a safe somewhere in Texas or Florida that will out her as a lesbian, or claim she's an atheist, or some kind of immaterial nonsense that will be gobbled up by the rank and file of the Republican party who typically vote with party blinders on. How else can you explain Bush's election & re-election (besides fraud)? I wouldn't hire Bush to mow my lawn let alone make important decisions for our country. When they can't fight Hillary on substance, they will manufacture some horrendous-to-a-conservative story that even though false will plant a seed of doubt in people's minds, and they will pound home the premise that she is shrill and angry. But as illogical as it is to me, she is a polarizing figure and I think even moderate Republicans would never vote for her. I hate to say it, but I hope that Hillary is not he Democratic nominee in ’08 for the sake of the fututre of political discourse in this country. The insanity that passes for politics as usual these days will snowball to the point where the country will be so divided by politics that only another tragedy, disaster or attack will bring us together again. In the meantime, years will have been wasted. We are practically there already. I think we could uses a few years of Democratic rule of both the White House and Congress to undo some of the twisted deeds of the current administration, then we really need to embrace the two party system that utilizes checks and balance and brings to the forefront the best ideas of both political parties in the form of progressive legislation.

The only hope for a half-way decent, human election would be if John McCain ran because even if he is too conservative for my taste, I believe he is an intelligent, sincere and respectful person and we may actually hear some substantive debate. If Guiliani runs against Clinton, we are in for a blood bath. The cancelled Guiliani-Clinton Senate campaign that New Yorker braced for will finally get its day but on the national stage. Perhaps what the country needs is the unity ticket of McCain/Clinton. President McClain could let VP Clinton follow the Dick Cheney model of the office and give her sustantive responsiblilities that will provide the red states with a platform to see her in a new light, wiping the slate clean for her to run with a mandate in 2016.

But I digress...

Things are still slow going for Lance. He has some "feels-good-but-still-tired" days, and some "very-very tired" days. He had resumed taking the nerve pain medication, Lyrica, but he has come off it now because it was making him way too sleepy, and he was having a hard time fully waking from the deep sleep it put him in. He was confusing night for day and asking me crazy questions thinking his dreams were reality. He would ask me funny things - real nonsequetors out of the blue - and when I looked at him closely, I realized he was be on the edge of asleep and awake. As soon as he came off the medication the disorientation stopped. I was relieved because one manifestation of amyloidosis in the brain is Alzheimer disease, although it is comprised of a completely different type of misfiring protein, a beta protein. The amyloidosis Lance has is from a lamba protein and as far as I've read the two do not co-exist or "travel". Lamba proteins do not effect the brain, and beta proteins do not effect th heart and other vital organs. It preys instead on the just the brain. Considering our luck lately, I was fearful that the episodes might be new symptoms of the disease effecting Lance's brain. I know academically that it is not possible, but I had premonitions of Lance breaking medical history and got myself worked up into a tizzy! When he stopped taking the Lyrica and the the odd behavior stopped, I felt reassured that he was not any more a medical marvel than he's always been.

Lance has tried to connect with some friends, but his sleep pattern has been so erratic, that he seems to fall asleep whenever someone make plans to come over. I've had to abort a few visits because he was just too groggy when he woke up, and when he was on the Lyrica, he was worse. It's frustrating for Lance because I know he would like to have some company but it just hasn't seemed to work out. I've tried to help him plan his naps so we can anticipate when he'll be awake, especially over this long weekend, but that hasn't really worked out too well! I guess I can't plan everything! Dammit!

Lance has not yet decided when he will start physical therapy, but he has continued doing his home exercises and gets up and moves around the house more. He prefers to get up and do things for himself that I would have done for him prior. It seems that he can stand a bit longer than he was able to when he was discharged in December, but he still needs the wheelchair to go outside.

Lance's appetite is still hit and miss. His large tongue still gets in the way both physically and mentally. His sister Beth came by today with cook books and I am going to try using the slow cooker to prepare some new dishes for him. He is desperately bored with his soft food options, so much so I finally surrendered and got him some White Castle hamburgers! He is supposed to stay away from fast food or take-out but the soft White Castle burgers went down OK and they satisfied his craving! Also my Aunt Phyllis gave me a recipe for lentil soup which I made and it came out very good and was delicious. Lance liked it, too!

We see Dr. Comenzo on Wednesday and get the details on the next step of treatment with the chemo drug Velcade. I'll post an update after that appointment with the details.

~Lisa

Day +59: FLC Results

2006-02-10T20:53:00.000-05:00

I've been very busy at work and neglecting the blog, but I've cleared the first hurdle of my work project and will have some down time for the next few weeks. Lance has been a real trooper and has been holding his own while I've been working longer than usual days. I did manage to work at home 2 days last week so that he didn't feel completely abandoned, but I also had to work some over the weekends, so he's been mostly on his own. In past weeks his mom was able to come over during the week, but last week that was not possible, but we managed. Lance still eats very little and won't even try to eat if he is alone, so this past week is not one I'd like to repeat. Lance is still very weak and I attribute some of that to the disease, but a fair share of the problem is caused by his poor appetite and difficulty swallowing.

A week had passed and we hadn't heard from Dr. Comenzo regarding Lance's FLC numbers so I sent him an email. He responded very quickly and told me that Lance's FLCs were down, but not as low as we had hoped. Prior to the AuSCT Lance's FLC was enormously high at 2200, a raging faucet of bad protein spilling over into his soft tissues, tongue and heart. A normal level is 200. Dr. Comenzo predicted that we had brought the level down to between 300-400 and thought that with additional chemo we could shut the faucet off completely, at least for a while. But Dr. Comenzo wrote:

"Not as low as I hoped. Lambda FLC are greater than 50% reduced (which is good) but remain at 827mg/dl. I suspect we can get them down considerably with additional therapy. "

While Dr. Comenzo remains optimistic, I must confess that we were a tiny bit disappointed by the result (I know, I know, in this case we want to see the glass as being half emtpy, not half full...). Still, it doesn't change the doctor's earlier recommended therapy of Velcade and dexamethasone that Lance will begin in March, so I am led to believe that the results do not require more drastic or urgent care. We find some comfort in that. Also, while we were hoping for a lower number, I'm also not so surprised because Lance's condition seems to have plateaued in the past 2 weeks, and there are clearly some signs that we have not seen the last of this dreadful disease. In particular Lance's enlarged and widened tongue is giving him more trouble and anxiety. He still is most comfortable eating purees or liquids. The few attempts he's made recently at eating solid foods have eventually led to anxiety attacks. Imagine losing your swallow reflex and having to concentrate on every morsel. You'd skip a few dozen meals, too.

Although weak, Lance has made some effort to walk around the condo more with the help of a walker. He must stand a few times a day because the fluid in his lower body will pool around his hips and thighs and cause his legs to fall asleep, so he must stand up to wake them. He has also slowly begun to do very basic exercises that a physical therapist from Sloan gave to him while he was an in-patient. Most of the exercises are performed from a sitting or lying position as they were designed for bed-ridden patients. So slowly Lance is working his way toward formal rehab. I've been giving him some space on that issue, but I shared my concerns with Dr. Comenzo who told me that perhaps after the next round of chemo therapy Lance may regain some energy. One of the drugs he will be taking, dexamethasone, is a steroid that could give him energy and increase his appetite. The more he eats, the more energy he will have. Of course if Lance's appetite increases but he cannot consume more because of his enlarged tongue, that's a whole other problem! We'll just have to face that dilemma if it comes our way.

We did get some good news last week, though. I got call from a social worker at MusiCares, the charity arm of the Grammy awards, who said they want to help us. They received information on Lance from the Jazz Foundation of America, the organization that has offered to make some mortgage payments for us. The organizations work collectively and in tandem when possible. The social worker told me that since they had all of our legal documents, all they needed was the completed application form and we'd be ready to receive some assistance from them. Thankfully I already had the MusiCares application form because our good friend Jennifer had one sent to us in December. I just have not had the time to fill it out properly. I knew once I had the Jazz Foundation application complete that getting the others together (MusiCares and Sweet Relief) wouldn't be too difficult, but still I hadn't found the time to focus on them yet! Of course, now I am totally motivated, and will spend some time during the coming blizzard to pull that together.

So the slow dance continues. Some good news, some just-OK news. I have to work Saturday then I'll be racing home to beat the impending blizzard. We'll bunker down for a few days, but I don't mind getting snowed in once a season. Let's just hope this is the last major storm of the year and that spring will bring a real rebirth this year.

~Lisa

PS....Spam seems to have found it's way to the comments section of Blogger/Blogspot. For example, if you read the comments section from the the Feb 1st posting, you'll see that if your dog has irritable bowel syndrome that a nj/dakota house cleaner can help!

Day +50: Five-O

2006-02-01T22:33:00.000-05:00

Today is day 50 of Lance's post-transplant life. It reminds me of the Saturday Night Live sketch with Molly Shannon as Sally O'Malley. "I'm fifty...five-oh!"

Overall Lance has been in slightly better spirits, and I think he had a touch of spring fever like the rest of us with the nice weather recently. He cracked a few jokes this week, and made me laugh, and I was reminded again how much I love and miss the carefree, fun-loving side of Lance that's been asleep for months...and it appears now that he actually was asleep for awhile, sort of, during his stay at Sloan Kettering for the transplant. Lance told me recently that he actually has no memory of about 8 or 9 days of his hospital admission, although he seemed to know what was going on at the time. I guess his consciousness was somewhere between awake and asleep. It's no surprise with all the drugs that were pumped through him.

We are still waiting on the test results from Dr. Comenzo, but in the meantime Lance is slowly beginning to do some physical exercises to wake up his muscles. Lance was given a packet of exercises by the physical therapist while in the hospital, but only now is he really looking at them. Most can be done in a seated or lying position, so he should be able to do them all, and make a habit of doing them. Lance's motivation began after he got very frustrated recently when he had trouble lifting himself out of a chair. He staggered and almost fell back into the seat, but he pulled on me and used the walker to steady himself and stand. He brooded a while then confessed later that his was upset at how his legs gave out on him. I reminded him that he hasn't stood or walked but for a moment for the past few months, and his thigh muscles are very weakened and need to be worked. Standing up from a seated positon has been a struggle for Lance for a long time, and I usually assist him by standing in front of him and allowing him to pull up on me as a brace. I don't pull him up by his arms because they are frail and his wrists seem especially fragile. Lance has osteoparosis (brittle bones) which is as a complication from the myeloma, the bone marrow cancer, so I must be careful not to hurt him. We get so focused in on the amyloidosis that I sometime forget about the cancer.

Lance is still resisiting the start of formal physical rehab, but I think it may not be too long now before he decides the time has come to begin. I asked him why he doesn't want to start yet, and he told me he wants to get stronger first, but that doesn't make sense to me. It's like cleaning the house before the cleaning lady comes over! What's the point!! Making him stronger is what the PT is designed to do. I assured him that they will not over work him, nor make him endure pain or do any more than he can, but they are professionals and they can help him. Dr. Comenzo also suggested light massage may also help Lance's muscles wake up, so I will find a massage therapist, one who will come to our house. I promised Lance that I would spend some time with him tomorrow to manipulate his arms and legs like Dr. Comenzo suggested, but I cannot direct his rehab at home. I am not qualified and honestly do not have the time in the day with the full time job and chores that I must attend to. We'd be doing the exercises at midnight! I suggested to him that in order for him to get stronger (or as he perceives it, strong enough to start physical rehab) he needs to 1) start eating, and eating protein to build up his muscle mass, and 2) do some of the home excercises the PT gave him. Lance may feel that he is still in the "convelescence" phase of his recovery, but two doctors now have told him to begin rehab, and I trust they are not rushing him.

Lance is still tapering down the pain medication, but the taper will take a long time, too long to put off physical rehab. He will always need some pain medication so we will find a way to live with that fact and not let it stop Lance from progressing. Lance's main side effect from these medications is sleepiness, but also I believe they are not helping his appetite. He stopped feeling "high" from the pain meds early last year, and now they work just like any other medication one takes for some ailment. Believe me, there's no party!

...but all in alll...things for Lance are a little better than they were last week, and we can only hope that next week will be a little better than this one. Baby steps....

~Lisa

Day +44: Chain, Chain, Chain

2006-01-26T21:26:00.000-05:00

On Tuesday Lance went back to JFK Rehabilitation Insitute to be accessed for their Day Rehab program. We waited around a lot, but finally Lance saw the psychologist and physiatrist. When Lance is ready to begin they will have a spot for him. The next day we had Lance's one month follow-up with Dr. Comenzo at Sloan. Dr. Comenzo more than just cleared Lance to begin physical rehab, he encouraged Lance to begin. He also told him that he had to eat more protein and begin to reduce his opiate intake to build back his lost muscle mass. I think Dr. Comenzo words resonated with Lance and he may decide to begin physical rehab sooner than he had previously stated (which was "no time soon"), so I will not push him unless the wait becomes unreasonable.

Lance has been making an effort to stretch out his pain medication rescues and today stretched his dose period from 4 to 7 hours. In last hour he experienced a lot of pain, but insisted on toughing it out, and only asked for the rescue once the hour hand touched the 7 hour mark. I commended him on the effort, but reminded him that while he needs to begin pulling back, he does not have to live with unbearable pain. We can adjust the dosage so that he receives smaller amounts every 4 hours, giving him relief without trying to break a world record for pain endurance! Who's he trying to impress, anyway? Dr. Comenzo told him to reduce the opiate intake, not jump off the cliff and stop cold turkey! The last thing Lance or I need is to add rapid morphine detox to the mix! Slow down there cowboy, and still take your medicine - just take a little less each day!

At Dr. Comenzo's appointment we all acknowledged that Lance looked smaller, and although he has lost body fat and muscle, his amyloid deposition seem slightly less. It is true that Lance's tongue is a little bit softer and not as protruding as it once was. Dr. Comenzo said this is a sign that the amyloid is beginning its slow regression. I questioned him about whether the amyloid bulges on Lance's back were in fact receding, or if the 20 lbs of fat and muscle Lance has lost since his hospital admission are tricking us into just thinking the amyloid is lessened. He answered that the softening of the tongue is indication that the body has begun to dispose of the deposited amyloid. This further means that the stem cell transplant has at least temporarily halted the production of new amyloid, giving his body the chance to process the excess. Before the transplant Dr. Comenzo had predicted that Lance's amyloid regression may be quicker than they typically see, because Lance's onset was much faster than he has typically witnessed. This is why they acted quickly to get him into the hospital for the treatment - Lance has an aggressive case, so it is new territory Lance is mapping with Dr. Comenzo. Because things are picking up steam, Dr. Comenzo has decided not to wait for the 3 month follow-up to check Lance's lamba free light chain (LFLC) levels, the screwy chain of molecules that produce the amyloid protein. All we need to know for now is the lower the LFLC, the better. Normal is 200 and below, and pre-transplant Lance's level was off the charts at 2200!!. Dr. Comenzo said that 300 and below for an aggressive case like Lance's would be very, very good. We will not have Lance's post transplant numbers until early next week, but Dr. Comenzo predicts that the level has been brought down far enough to begin to see improvement in Lance's soft tissues, but it may not be low enough to safeguard his heart from further trouble. We'll know soon.

Given all this, and regardless of the LFLC levels being OK, good or great, Dr. Comenzo has decided to continue treating Lance and has asked him to participate in a new clinical trial with a chemo drug called Velcade. Lance may begin receiving via IV in early March. Velcade has been used with great results for multiple myeloma patients and is in clinical trials for use by amyloidosis patients. Lance will be among the first group of primary (AL) amyloidosis patients that receive it fairly soon after transplant. Velcade has traditionally been used in myeloma as a second line treatment after a patient relapses. In this new study, amyloidosis patients are receiving it after successful transplants to further knock down the number of LFLCs and to declare the patient has what they call a CR, or "Complete Response". They do not use the word "cure". In any case, Velcade has extended the lives of many myeloma patients, and hopefully will be available to more sufferers of amyloidosis because of this trial. Lance makes a good candidate because he has myeloma also (although is is considered early statge or smoldering) so the insurance company will approve the drug. Since the FDA has not yet approved Velcade for all amyloidosis cases, many patients have trouble paying for the expensive drug. Velcade has typical chemo side effects (except hairloss from what I've read), but Lance will receive other medications to balance out the effects. Low blood pressure is a main side effect which leads to light headedness, loss of appetite and some nausea.

Dr. Comenzo will email me the LFLC levels as soon as he has them. If he dosen't like the numbers he may call Lance in early to begin the Velcade sooner, but right now he is betting they will be in the neighborhood of 300-400, and that Lance will begin the Velcade treatments March 1st.

I finally found shoes wide enough for Lance to wear on a website called zappos.com! Since his feet have swollen so large with fluid he hasn't been able to wear any of his shoes and he has stopped wearing the tight stocking socks that used to helped him get in his shoes. The stockings have begun to dig into the top of his ankle causing some discoloration and we are afraid it may break the skin and cause fluid leakage. Lance already has one leakage spot on his shin where liquid is actually seeping out of small spot that looks like it may have had a scab covering once. The tissues in his legs are so saturated that the tiniest opening is exploited and it is as if his shin has a constant tear running. It's freaky! We showed it to Dr. Comenzo who said that this is common with cases of severe edema (swelling from fluid) and told us to apply triple antibiotic ointment to the spot daily and keep a dressing on it. If fluid can seep out then germs and bacteria can enter his body through that spot, too.

We received very good news earlier this week. We heard from one of the music organizations we applied to for financial assistance, and the Jazz Foundation of America has offered to pay our mortgage for the months of February and March. They have also passed along most of our information to the MusiCares organization (Grammy Awards) and I should have that application submitted shortly. Lance teared up at the news , because it validates his work as a musician for 30 years, and helps him to feel he is contributing to the household. Without disability benefits and not working since May 2005, Lance has felt bad that we have struggled financially. This news from the Jazz Foundation of America was really the mental boost he needed, and he feels that he has brought in some resources.

More when there's more...
~Lisa

Day +39: Amyloidosis Support Group

2006-01-21T17:47:00.000-05:00

The amyloidosis support group at Mt. Sinai Hospital was interesting and I am glad we went. I would go again in the future and I think Lance would too. Unfortunately we arrived an hour late because we were slow to rise this morning, but the meeting was planned to be 5 hours long, so I knew we would still get something out of the day. We were lucky and got a good parking spot right out front of Mt. Sinai and Lance transferred to the wheelchair. The room was a bit small and was very crowded, maybe 30 or 40 people, some patients, some caregivers and families. There was mix of primary (AL) and familial amyloidosis patients. Lance appeared to be a little younger than many of the the other patients. We stayed near the door at the back of the room because we arrived late, the wheelchair was bulky and the room was too crowded to maneuver. Lance wore a surgical mask because his immunity is still weak, and here we were doing the very thing Dr. Comenzo told us to avoid....being in a small space with a lot of people!! At least everyone in that room could sympathize, though.

I think we missed the portion of the meeting where the patients shared their personal story about having amyloidosis or caring for someone with amyloidosis. When we arrived we heard the last two stories before the lunch break. Dr. Comenzo was also there as the guest speaker and Lance and I agreed that he is a rock star in the amyloidosis world! Everybody in the room sang his praises and once again he showed total humility and kindness to everyone. He permitted people to swarm around him with questions during lunch and he really seemed to recall everyone from past meetings if even if only once.

Lunch was a sandwich and a colds salads spread (that was for those of you who like to know what food was served, mostly my friends/co-workers and mother's side of the family!) Lance had some of the soft pasta salad and tuna fish. I was a bit surprised when he asked me to get him something to eat. I usually have to make the suggestion. About 10 minutes before the end of the lunch break we looked up to see Dr. Comenzo standing above us. "Mr. Carter! You're looking well! A bit smaller, but well! I see you on Wednesday, right?" It was considerate of him to make a point of coming over to say hello to Lance, especially with the tight space in the room and the groupies trying to monopolize him. It was also nice that he instantly recalled our upcoming appointment this week. Lance told him he is feeling a tiny bit better each day, and that his appetite and his taste are returning. Dr. Comenzo said that he thinks that we may have gotten rid of the factory in his bone marrow that produces the amyloid and that he was excited (actual word he used) to see Lance's light chain blood levels this week. He told Lance that seeing him out and at the meeting and looking stronger and more alert, brought joy to his heart (again, actual words). Dr. Comenzo really does think of his patients as people and not test tubes, and when he delivers these sentiments it is with the utmost sincerity and not at all corny. Lance always feels more optimistic about his prognosis when Dr. Comenzo is confident and upbeat.

After lunch Dr. Comenzo took questions from the group and explained some new clinical trials and drugs. He explained the politics and economics of drug research, and it all boils down to the fact the pharmaceuticals do not stand to make money off of amyloidosis because it is so rare. They are not willing to foot the bill for clinical trials, even for drugs which have been proven to be effective for certain types of amyloidosis, including the soft tissue form that Lance has. This drug had actually destroyed the amyloid deposits in the body with rapid and drastic results in some patients who otherwise would have to wait 12-24 months to see improvement after a stem cell transplant. This drug was yanked from testing because the company was actually looking to make a drug for Alzheimers and they decided to continue that pursuit. That would be more profitable for them, despite the fact that they had stumbled onto a very potent treatment for amyloidosis patients.

There was also talk in the group about price gauging from companies like Celgene who make Thalomid (thalidomide) and who has priced a pill that was developed in Germany in the 1950 's for a few cents, at $250 per dose. This multiplies to $4500/month, and there are no research & development costs to recoup! They bought a patent for the drug from the German maker when it was still banned in the USA by the FDA, and they struck gold! I can accept some price adjustments on medications that are new or experimental, but this sounded to me like pure price gauging. Even more frustrating is that most insurance companies won't pay for thalidomide to treat amyloidosis, but will for multiple myeloma . That is why our insurance company covered Lance's short run on thalidomide, because he also has multiple myeloma. Others is the room said the myeloma/amyloidosispatients were lucky, because they would have cheaper access to the drug. Can you imagine that? Lucky to have multiple myeloma and amyloidosis?

The Q & A went on for another hour and we left pretty quickly, mainly because there was not enough space to mill about the room and meet people. We only really spoke with people who came over by us, but that may have had a lot to do with the fact that we were seated next to the dessert trays! Since we were also seated by the door so we slipped out quickly to avoid the mad rush to the elevators, which reminded me of when I was young and we used to leave church after communion to beat the traffic! Unlike hurried Catholics dashing out of mass, we soon learned that there is no such thing as mad rush of Amyloidosis patients!

Lance said he was happy he went and I think he made special note of the others in the room who had the same enlarged tongue problem he has. One man named Fred came over and asked Lance about surgical mask and how long it had been since the stem cell transplant. Lance told him it has been about a month, and Fred volunteer, "Yeah, hang in there. I got it in the tongue, too, it gets better." Another woman told us the first month after the transplant is the hardest, but now 7 months later her husband was up, out and chopping firewood! Lance perked up when he heard that! We don't have a fireplace, but it helps Lance recover...!

All in all a good day.

~Lisa

Day +36: Some Nerve

2006-01-18T21:51:00.000-05:00

Lance had an appointment Tuesday with Dr. Stubblefield, the physical rehab physician at Sloan Kettering who works with Dr. Comenzo. He is over seeing Lance rehabilitation and told us the first step is to try and increase Lance's endurance so that he can walk longer with less discomfort. He prescribed physical & occupational therapy, specifically stretching and strengthening exercises to start. He will communicate with the folks at JFK where we'll go next week for another assessment for their outpatient programs. Lance was initially screened for their Pain Management program, but Dr. Stubblefield wants him in the Day Rehabilitation program. I want Dr. Stubblefield advising JFK because he has worked with Amyloidosis patients. Amyloidosis is not common, and Lance's extreme soft tissue involvement is also not typical for the disease. Dr. Stubblefield told Lance he has never seen such an extreme case involving the muscles and he estimated Lance has about 40 lbs. of amyloid deposited throughout his body, mostly on his back from his lumbar area to the base of his skull, his tongue and an area surrounding the left clavicle. Those large amyloid deposits are cutting off nerve impulses to the muscles in his arms, chest and back, causing them to atrophy completely and disappear. As a result Lance now has zero muscle tone and his tendons and bones are quite visible. His upper body is skeletal, with the exception of the amyloid bulges. His once large upperbody and cannon arms, built up from 30 years of hitting the drums, are totally gone. His chest pectoral muscles, once the butt of many 'man-titties' jokes, are gone as well. Below the waist is a different story. There he has about 20 lbs of fluid retention in his feet, legs and hips. Dr. Stubblefield said that it will take a long time for the amyloid to regress, but as it does those damaged nerves can come "back on line" and he may experience new nerve pain in that process. In other words, the amyloid gets you coming AND going! The nerve pain medication, Lyrica, that Dr Stubblefield prescribed pre-transplant will help with that pain. Lance was taken off Lyrica when he was admitted for the transplant in December, but he has the go-ahead to take it again if he feels he needs it. He also said that once the nerves come back online Lance may be able to build up some bulk in those atrophied muscles. Which nerves may come back to life, and which muscles may be reborn? Can't say. Add it to the growing list of the unknowable and uncontrollable.

Lance is still waiting for Dr. Comenzo's green light to begin therapy, but there is a catch. Lance told me after the Stubblefield appointment that although everyone else thinks he can start rehab, he feels that he will not be ready to start rehab anytime soon. He didn't say it, but it he felt I was pushing him to begin PT too quickly, and that I should back off. I did, but we agreed that we'll keep the assessment appointment at JFK anyway so that we secure a spot, and then we'll wait until he is ready. What Lance saw happening in me is my obsession with getting him back to a better frame of mind. Logistically, we can manage and cope with his disability - it takes some advance planning, but it is do-able. It's the emotional front that is the hardest, for both Lance and me. I want so badly for him to see improvement in his condition so that he can begin to have real hope and gain real confidence that he will pull through this. Life will not be the same, but it can still be good. Now's no time to waste time, but I will remain patient.

We had a visitor on Saturday, our friend Adam who happens to be a 4th year medical student. He going to be a radiologist in Michigan, so he won't be of much use to us! We watched some football and caught up. We haven't seen him since our wedding last year. Lance has a few other visiting dignitaries lined up this week, and it's good to see him reconnecting with people.

Lance's appetite still comes and goes, but he now has more menu options after we went to the supermarket Monday night. Lance donned a surgical mask and we went at 9pm to an A&P we knew would be empty so Lance could use the store scooter to browse the aisles. We had to go to any empty store because our past experiences with scooters in crowded stores were nightmares and borderline traumatic. People really do ignore the disabled person and Lance become invisible. People dashed around him and expect the scooter to yield all the time. Lance would get cornered in places and I'd have to go over and hold the traffic. He would grow so angry! He refused to go to the store for a long time (pre-transplant) because of those episodes. The bleeding heart liberal in me always thought those impressions of the disabled being an underclass were exaggerations, and that people really were considerate of disabled people, like I was taught to be. Another shattered illusion!

When we got home form the supermarket we discovered that we were locked out of our condo. Shit! A lock that we never use on the doorknob somehow got turned to the locked position. I didn't have that key on me, and I was unable to break in (I tried, but...). I called Lance's sister who has a set of our keys, but she did not have that key either. Shit! I transferred Lance in his wheelchair back to the car where he sat with the heat on and Karen connected me with a locksmith who called me back quickly for the details, but he arrived around midnight after getting lost twice. The locksmith couldn't pick the lock because our door is sealed very tight in the door jam, so he had to drill the lock out and replace the entire doorknob. My neighbor across the hall came out and supervised the locksmith, as he is a retired cop and hears everything. He has always looked out for us, even when I lived here alone, and that night was no exception. When it was time to add up the bill I almost fell down! Add the "service call" fee and the "lock-out" fee (aka the "dumbasses who locked themselves out, and are in a bind, and it's 1:00 am and they have to pay any fee I impose" fee), and jacked-up hardware cost, the bill came to $200. Shit! Shit! Shit!

This weekend Lance and I are going to our first Amyloidosis Support Group at Mt. Sinai Hospital in NYC. We will be there most of the afternoon, and this will the first time we meet other Amyloidosis patients and caregivers, and fortunate for us, Dr. Comenzo is the guest speaker. Lance is a bit iffy on the whole thing, but so far he is still willing to go. If he bails out on me Saturday I will go without him. Let's hope he goes and that it helps him.

I'll update the blog Saturday night after we return from the support group.
~Lisa