Boxes

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