Thursday, October 28, 2010

In The Eye of the Beholder

Starting at the end of the story: I'm sitting in the waiting room at the clinic on Monday waiting for my velcade shot. Nurse Patty, whom I've known for most of my years of treatment comes in, chart in hand, announcing, "Dan? Dan?" I waive my hand and stand up to accompany her into the treatment room. She whispers to me, "oh, I was hoping it wasn't you." I look at her quizically. "What are you talking about? Is something wrong?" I had already received my blood counts for the day and met with the doctor. I was told everything was fine. She says, "you're getting velcade. I'm so sorry." I again respond, "I don't understand. What's wrong." She says, "I thought you were done with treatment." "Oh, you thought I was in remission and have now come out of it?" "Exactly," she says, "you looked so good, and still do. You don't look like you've come out of remission." I told her that I haven't had a day of remission in 5 1/2 years and was quite excited about starting velcade as it might help reduce my residual myeloma before my donor leukocyte infusion (DLI). So, she feels bad and I feel good about my getting treatment. And that's the way it goes.

Much to my surprise, they boosted the velcade with steroids once again. A much smaller dose of both, I'm told, although I certainly felt the effects of both in the past 2 days. I think it only goes to show how strong this stuff is. My body has handled some fairly heavy doses of chemo over the years but now that I've had a chance to clean out for a few months, I can feel its power. That's good I suppose.

Mike starts his injections in a few weeks so we're on track for my DLI at MDA in January. Rifkin finally gave me permission to go to the health club--with a number of restrictions. Still it feels good to be "allowed" to start waking up my muscles. I'm not sure which has a larger circumference, my biceps or my ankles--the proverberial 98 lb. weaking. It's all Big Fella's fault.

Happy Halloween to all.

Tuesday, October 12, 2010

Big Fella Unleashed

Those of you who grew up with the Big Fella, Mr. Pete and Fuzz will understand the potential repercussions associated with releasing the Big Fella's cells in me. Although I was told that I could be on anti rejection meds for years, I'm off them after six months. The anti rejection meds are now on the shelf. We'll have to be even more vigilant for signs of GVHD (graph vs. host disease). Although I think the fact that I haven't had any makes it less likely, I'm told that's not the case. Doesn't make sense to me.

My counts are very good. White count 3.2 (in normal range); hemoglobin 11.9 (normal is above 14); and hematocrit 35 (normal is above 40). I don't think my numbers have been that good since I was dianosed.

I'll be starting another chemo drug, velcade, in two weeks, in an effort to bring the myeloma levels down further, or at least to keep them in check.

The vaccine trial I've discussed in previous posts is a randomized trial, meaning about 50% will receive the vaccine and 50% will not. They told me when I was in Houston a couple of weeks ago that I was randomized to be in the control group, i.e., I won't receive the vaccine. I will, however, receive another infusion of Mike's cells in early January. This is called a Donor Leucocyte Infusion (DLI). If I was participating in the vaccine trial I would be getting the vaccine along with the DLI. Mike still has to go to MDA three times between November and January to receive growth hormone shots (don't tell Roger Clemens). He also has to give himself six of these shots during that same time period. The DLI has been known to bring people into remission with other blood cancers, such as leukemia. I'm unsure of its success in myeloma patients. If I don't respond to the DLI within a few months, then I will be eligible to receive the vaccine. So worst case, I'll have to wait an extra 4 or 5 months to get the vaccine. Best case is I won't need it if the DLI brings me into remission.

I really don't know how to describe my feelings about achieving stability after 5 1/2 years of rigorous treatment. Disbelief? Fear that it will all come crashing in? Hope? Bewilderment? Excitement? Caution not to get too hopeful and then be disappointed like so many other times? All of the above and more. I have faced my mortality and prepared myself for the end, endured some very painful episodes, and learned to live with my messed up body--my feet are numb, I have no ass, my hair keeps falling out, I can't hear and I live on imodium (anti diarrhea med). My mind has taken me to some very dark places. I don't feel that I even know how to deal with the possibility of a life without constant treatment. Could I really be one of the lucky ones? But I am one already. That's just a glimpse into my reaction to six months of stabile disease. Perhaps Jerry Garcia said it best, "what a long strange trip it's been."*

*For all you deadheads and aging hippies, the line, "what a long strange trip it's been" came from the Grateful Dead's song "Truckin", and was actually written by Robert Hunter, a friend of Garcia's but not an official member of the band. The line is also the title of the Dead's compilation album released in 1977. Which reminds me maybe I need to once again live by the motto of that era and just keep on truckin.

Dan a/k/a The Fuzz (circa 1970 when I had hair)

Thursday, October 07, 2010

The Incredible Shrinking Man

I forgot to mention, in the last post, the varied, but discouraging, results of my height measurements. I had 2 measurements taken by 2 different nurses within 20 minutes of one another. First it's important to know that each of them could not have been taller than 5 feet, with heels, so how they could see where to place the measuring bar is beyone me. Nonetheless, the first measurement had me at 5'7"; the second at 5'7 1/2". YIKES. Either one is shrinkage. In March 2005 I was 5'11 3/4". In July, after my spine collapsed, I was 5'8". I'm continuing to shrink--but only in stature. In this way, I guess I have many more people to look up to.

Tuesday, October 05, 2010

Time in Texas

Much to say and most of it good. I've spent the better part of the last 2 weeks in Texas. First, at MDA and then a return trip to Tyler for my nephew, Kyle's, wedding. (Kyle is Mike's boy). The wedding was a great celebration. Kyle has married a beautiful young lady, Gennie. All of Mike's siblings (Tom, Kathy and me) made it to the wedding along with our mother. We (Susan, Catherine, Julia and I) spent many vacations with Kyle and his brothers, skiing, canoeing, going to the beach. I enjoyed seeing all these guys now that they've become young men. While some would say it makes you feel old, it made me smile the entire weekend. I so appreciated that I was able to participate in this life event for Kyle and his family. The last five years have made me very grateful to be able to spend time with my family. Tom has a few pictures from the wedding posted on his blog:

The testing at MDA went without a hitch, although it sure felt like they jammed a number of tests into the 3 days. I met with my doctor at 4 p.m. on Friday and went through everything. The IGGs have dropped a bit to 1800; M protein is 1.5, down from 1.9 in June when I was discarged ; blood counts are good although white count is a bit low; pulminary function is normal and improved from June, bone density is normal, including in my back which is a nice improvement given my numerous compression fractures.

We reviewed the vaccine trial and then they "randomized" me. Do I get the vaccine or am I a part of the control group? Since this is not a blinded trial, they told me--no vaccine, the computer randomly placed me in the control group. This means that I will receive another infusion of Mike's lymphocytes, but this won't include the vaccine being made from my plasma. If I don't respond to Mike's cells, then they will give me the vaccine. So being in the control group means, at worst, I have to wait a few extra months to get the vaccine. Mike will be starting the injection process to prepare his cells in November. I'll get the infusion sometime in January. In the meantime, I have to see my doctor here on a weekly basis, and go to MDA every 3 months.

While I was spending time in Texas, Susan took off for Vermont to spend a few days with close friends who have moved east. Then she headed across the Atlantic to spend some time with our good friends, the Coyles, who live in Paris. To say she needed a break from me would be an understatement. She's spent 8 months over the past 18 months being my 24 hour caregiver. That's enough to drive anyone crazy. A trip to Paris seemed like an appropriate reward for keeping her sanity. We are now both safely back at home.

Our best to everyone.