Now that this blog is up and running I find myself wanting to justify it with an update, even though I’m still a month away from the stem cell transplant that is going to decide the length of the rest of my life, and what kind of life it will be. So here is some news: my hair is growing back. I discovered just how quickly during my recent stay in the hospital when I found myself without the handy electric shaver I’d been using over the past few months to keep my previously patchy, slow-growing stubble from getting too raspy. Since the stakes of my personal appearance were more than usually low, I decided to let my hair grow, and after a few days (during which the consensus was that I looked like a convict) it has come back pretty much in the same patterns as before chemo, though maybe a touch darker. I must admit it’s nice to have the beard back; I have found that without it, people often don’t recognize me at all.
Anyway, in honour of many a hockey player before me, I’m calling this iteration of facial hair my playoff beard. You know, the kind of facial hair NHL players start growing when their team enters the postseason, and which they pledge not to shave off until they have either been eliminated from contention or achieved their ultimate objective. So this beard is going to be with me until the cytoxan from the preparatory chemo regimen wipes it out, by which time I hope my new immune system will be working on keeping me cancer-free for good (my version of winning the Stanley Cup).
No, sports metaphors don’t seem out of place where the struggle with cancer is concerned, at least not for me. I don’t imagine anyone can ever “beat” cancer in the sense of defeating it as a disease in the world, but I do think that it helps to picture this health crisis as a strange kind of athletic contest between my team (family, friends, doctors, nurses, my fellow cancer patients) and the mindless, perverse cells in my body that want to destroy the rest of me. It is a deadly serious game, but it has certain physical parameters, very strict rules and a final goal, however distant it may seem. There is also a sense in which I gain positive energy from thinking of my private struggle with cancer as a collective effort, just like playing on a soccer or hockey team. In fact, there’s a way in which cancer has made me aware of just how astonishing and moving the collective efforts of humans really are: the struggle to defeat an opponent we know we can’t possibly destroy for good, only keep at bay in particular cases, is an incredible testament to our resourcefulness and, more importantly, to our (often all too hard to discern) solidarity as a species. The time, energy, money, and other resources it takes for me to get just one successful chemo treatment is staggering, but we humans have somehow agreed that, where possible, it’s worth trying to save an individual life, even at great expense and against terrible odds (and my odds aren’t bad at all, though with a cancer as rare as mine there are few guarantees or even dependable statistics). We spend a lot of energy killing and hating each other, it is true, but I can’t help believing that these negative energies are dwarfed by the positive ones.
Of course, I’m very lucky to be getting good care from a fantastic cancer center, of course, and to have a good job that will make as many allowances for me as I need. But the fundamental reality is that, all things being equal, people do tend to rally around our weakest, most vulnerable team members and work to get them through their problems. In any event, there is no way I could deal with this disease alone, and I’m grateful for everyone’s efforts and good wishes on my behalf. Oddly enough, sometimes I feel this most keenly when I’m by myself in an isolation room at the hospital; even when I am alone I still feel connected to, and dependent on, so many others. As my daughters’ soccer coaches remind their players, when we are at our best, we win as a team and lose as a team.
So right now this beard is a token of my commitment to seeing this terrible cancer business through to the end as best I can, and to my necessary single-mindedness in that purpose. I still have what feels like a long way to go before I can even turn my body and destiny over to the UC Davis doctors and nurses on January 3, and I have to do my very best to stay completely healthy in the meantime. Even a slight fever for a cancer patient undergoing chemo means a trip to the ER and time in the hospital, and for me it also means possible delays or compromises with my transplant timetable, which involves many other people and lots of logistics. This complex process includes the sacrifices made by my brother, who will be flying out to Sacramento twice in the next month to get examined, poked, prodded, given injections over a 5-day period to ramp up his stem cell production, and hooked up to a machine that will harvest millions of his stem cells from his blood.
I still don’t know what caused the infection or virus that produced my fevers before Thanksgiving, but I can’t afford another such episode at this crucial juncture. This means that if there is any doubt at all about my immune system or my overall health in the coming weeks I won’t be seeing friends, answering the door, taking my kids to school, or eating out. I hope everyone will understand that these precautions are necessary, even if only for psychological reasons. Like any cliché-mongering hockey player, I need to feel that I am giving 110% percent, respecting my opponent, taking it one game at a time. You know the usual phrases. They are used because they work, and sometimes they are the only language that does. After all, the regular season is over, and now it’s do or die.
The Aspiring Chimera 