It's June, so you may be asking, "What happened to May?". Boston happened; time to be with Ryan & family, but also a week at Boston Medical Center (BMC) seeing practically every specialist of medical practice that there is. Actually, we were very impressed with the time the doctors and staff took with us, but it was sure longer than the 2 1/2 days we thought that we would have; indeed, we had appointments each day of the week. We already knew the recommendation, but on Friday they have a joint committee meeting of the specialists and others to review the cases of the people they had seen during the week. Their recommendation for me is to have the Stem Cell Therapy (SCT). The most aggressive one.
Perhaps you would think I would just jump on that rope and swing to the other side of the canyon, but that rope is a little dodgey and the fall pretty much lands you on some sharp pointy rocks. You are not going to get back up right away, if at all. So here is the schedule you follow. Read it and consider it as you were the one making the decision.
You arrive on a Wednesday, visit the Hemotologist, then the Nutritionist and then the Transplant Nurse Practitioner. Next day they place the catheter in your chest under conscious sedation. Then three days getting stem cell growth factor injections, which make you feel like you are going through a serious growth spurt, with aching bones. Three days of stem cell collection along with a visit to the Psychiatrtist ("Wassda' matter wi' you?! You muss be crazy to do dis' shit!!") and medication teaching and emergency instructions..... uh, emergency? Then a couple of days off, but I don't think I am allowed to be around the grandkids, certainly nobody who's sick. Then the chemo. This stuff is so potent at killing fast growing cells that they pack your mouth and cheeks with ice to help prevent mouth sores ("10x worse than canker sores"... ouch). Two days of that, a clinic visit, then a day of getting my healthy stem cells back. After that growth factor injections and antibiotics "every day until blood count returns to normal", which can be a couple of weeks.... or more. During this time we are in "the nadir period- expect red blood and platelet transfusions and possible hospitalization". Then it is get back to normal(?), release after 6 to 8 weeks from BMC and a recovery period of six months to a year. "Success rate", you ask? Well about 40% complete remission and 30% partial remission are the best figures we heard, but then we also heard lower figures. And the other 30%?
So, for the past month I have been pondering this; what should I do? It's giving up a lot of the best time of the year and plans; a family reunion on Orcas Island, my 50th HS reunion, bone digging in Montana, fishing, sunshine and time with the grandkids, family and friends versus the above and a long, hopefully, successful recovery..... or not successful. Do I take the time I have and be thankful for that or take the dice in hand and throw them? I don't want to "cling" to this life and just do everything medically and scientifically possible to stay alive no matter what the cost, financially, personally or at the expense of others, especially my wife's. That just seems wrong. But what if it gave me three, four or more years of relative good health?
I spoke to Sensei Paul Vielle at temple, asking about this Buddhist notion of clinging. I was surprised when I found myself crying a bit, but fortunately we were at the end of a table away from the others. He reassured me it is OK for me to want to fight for life, that is a human response and if anything Buddhism recognizes our humanness. Still, I do feel a little torn on this spiritual level. I remember visiting a Buddhist nunnery in Laos that had large murals painted on the walls, depictions of Buddhist Hell, which I didn't even think that Buddhists believed in. Graphic depictions of demons with knives cutting out tongues for lying, people burning and being stabbed, bitten by snakes and rats; you don't want to go to Buddhist Hell!
So here is my picture: I am at the edge of a sheer ravine into which a fall is certain death; behind me is a fire which is making its way towards me. In front of me is a rope vine, frayed and of questionable strength, but it will take me to the other side. However, the other side, even with its greenness, flowers and vines, is shrouded in clouds and you catch glimpses of golden and green eyes of... what?... peering out. What, really, will I be escaping to?
Death is our ultimate reality and I accept that. But what death truly means is a mystery, isn't it? It could simply mean blackness, nothingness, a "I am no longer I". Then, however, I run into my belief that in fact there are spirits and ghosts, which says..... what? That is the mystery. I honestly can't contemplate either heaven or hell, but then what is it that is "out there"?
I have had so much support from everyone, family and friends, assuring me that whatever my decision they support me. That is so reassuring, but still the weight of the decision has been heavy. It has been more than a month since we were at BMC, time that may have been critical, time that may have allowed the Amyloidosis to further infiltrate my body and its organs. We don't know the rate of progression, much less the future. So I simply have to, as they say, "fish or cut bait", or a bit more crudely, "shit or get off the pot".
DECISION: I am going to do the SCT. Don't ask me, "Why?", because I am not exactly sure that I have an answer for you, much less myself. I just had to decide.
