Home Stretch
“If you
start to take Vienna – take Vienna!!”
Napoleon
Bonaparte – on keeping focused on a goal, applying overwhelming force, and not
getting distracted.
It's been almost 5 weeks since I last posted. I think a combination of things becoming routine, extreme busyness, holiday preps, fatigue, flavored with a touch of denial have led to the lapse in posting.
So here's the news. I completed cycle 5 of 6 the week before Thanksgiving. My sister Randi and niece Kelli came from California, and along with my Stepmom Sherry came and stayed with us for the holiday. We had a super time, had a huge group for dinner including our neighbors, and like traditional Americans ate ourselves into a complete stupor.
While I feel great, and am basically living my normal life, I'm seeing some signs my body is getting fragile. I've started "the infection of the cycle," having had a sinus infection, then shingles, then another sinus infection. I've gotten in front of the sinus infections by a lot of preventative and not-to-be-talked-about-in-a-public-blog measures. The shingles were a medium case, just a band around my left side. Since I'd had the same thing around my right side after my initial battle, I knew what was going on. The cure for this, besides time & suffering, was to take four times the dose of my antiviral medicine daily. Which pretty much left my stomach a wreck for 10 days. "But I'm feeling MUCH better now!" (see video clip from earlier post).
December 26th I start my last cycle, a day later in the week than usual. That pushes my "bad days" to Saturday through Monday, but since that's New Years day I was taking it off anyway. I'll work the 27th and 28th, and return to work the 2nd to start the new year.
Medically, we've gained a lot more information but no clear path forward. We had a great meeting with Dr. Shah, the researcher at Moffitt who's on the leading edge of Mantle Cell science in the U.S. To recap an older post, in January I have three paths forward. The "do nothing" option means sometime between 6 months and 5 years from now I'll relapse again. Most probably in 2 years. Not in my nature to do nothing.
Second choice is to jump into the Allogeneic transplant right away. With the usual slowness I've become accustomed to, the Bone Marrow Transplant clinic still hasn't gotten back to me on my options for donor matches, even though it's been 6 weeks since my visit. If I'm going to do this, it needs to be done as soon as possible after my last treatment. Medically, it's the only known potential cure; but I'm not liking the risks very much. After analyzing them every way I can, and doing checks myself, here's how I read the odds: 15% chance of fatality within the first year; 20% chance of the transplant not curing the disease. 33% chance of chronic graft vs. host disease; 33% chance of everything going well. Going well means about 12-18 months on disability, but a probable lifetime of being disease free. Chronic graft vs. host disease means a diminished quality of life for years, disease free. Given no other options, of course, this is the way I'd go. These odds are somewhat customized to my age and general good health. If I was to do this at 60 instead of 55, of course, the odds swing a little more against me.
Third choice is "hang on and wait for more medical technology." This is what I did last time, opting for an autologous transplant instead of an allogeneic, hoping if I relapsed something less drastic would be available. Which it was. This treatment I'm on now, while certainly not easy, is very mild compared to the CHOP-R I did before. No hair loss, no bloating, no massive doses of steroids, food still tastes good (except for a few days after cycle 5). According to Dr. Shah, who wants me to seriously consider the transplant, the alternative is to go on maintenance Rituxan, every other month, for as long as it works. He says there's no limit to the number of times I can take it, and no record of anyone having a problem with long term use. Basically, you take it until you relapse. Most people who've done this are on their first occurrence of MCL. Only a few people have done it on relapsed Mantle Cell, so if I go this route I'm pioneering again. Of those on their first time, many have gone 2, 3, even 5 years before relapsing.
Why wait? Well, I've given up on keeping track of all the promising developments that are in Phase 1 or 2 trials, or right behind that, coming out of the European labs. If I can hold off until 4 years from now, I think the odds are higher than 33% something will be available to push this back some more years. Assuming something is available to put me back into remission, I could also do the transplant then. The gamble is that the next relapse will be harder to put back into remission.
Another factor, which seems laughable but is based on the reality of life and the state of health care in this country, is "this just isn't a convenient time to have cancer.!" My job is ending, the Affordable Care Act hasn't quite kicked in for my circumstances, and the stage of our family life really needs about 4 years before things are at a natural transition point. So 2015 or 2017 would be a much better time to have it. It's hard to keep these thoughts out of the medical decisions that need to be made.
So, short term plan is to finish the treatments, have a scan in February, see what Dr. Levine and Dr. Shah say, and make The Big Decision then. In the meantime, continue to interact with fellow travelers, do the research, pray, work, laugh, love, and worry.
Which is pretty much a prescription for anyone's life!
