One of my new rituals involves the annual establishment of my disability. It's a good question, in more than one sense. It's easy to see that physical injury can make it impossible for you continue to do your job, and it's not too hard to extend that to a rapidly progressing neurodegenerative disease like ALS, say. Other situations can be harder to understand.
Suppose instead that you are diagnosed with a disease that kills half of those diagnosed within two years. You get high quality care and after two years you are feeling pretty good and the disease is controlled, yet there is no cure, and the disease will progress. Are you disabled? That's where I am, and I'm not sure how well I can communicate how it feels to be here.
One version: imagine being in a military unit, after two years in Afghanistan, and only half the unit is still alive when you return. On the one hand, war has all kinds of stresses that simply being a cancer patient doesn't--as a patient, you don't see your comrades dying, or hear the screams, moans, cries of the wounded. On the other hand, when you return home from war your risk of death is suddenly reduced by orders of magnitude, a relief not generally available to cancer patients. So it's not a great analogy.
Another version: staying alive is my full-time job. It doesn't take all my time, but it is the focus of each and every day. Sometimes I have a clinic visit, but most days it's just about doing the daily chemo regimen, managing the consequences, and not getting into situations that cause avoidable stress. Like any "full-time" job, there's a certain amount of time for other things. This is my life now, and I think, immodestly, that I have been pretty good at it so far, with lots of help from Liz. Time will tell.
That's a self-involved perspective, of course. Nor is it original. I hope I'm not misquoting Samuel Johnson (or at least Boswell) here:
Depend upon it, sir, when a man knows he is to be hanged in a fortnight, it concentrates his mind wonderfully.
There are differences in my case, certainly. Unlike a court, your cancer doesn't give you a date certain. So many cancer stories begin "They gave me X days/weeks/months to live." Usually the teller outlived the date promised. The non-tellers of these tales, we may fairly assume, did not exceed the expected time frame. But what does it mean to be on the far side of expected survival? Mostly it probably means that we aren't very good at estimating how long a person will live, whether they have cancer, heart disease, or nothing that can be detected.
So never mind the fortnight. Or the knowledge. The mind is still concentrated, if not wonderfully. For the record, no one has ever said to me "you have X days/weeks/months to live." Strictly speaking, that's my job and the clinicians know it. I hope everything I've written here hints at the weakness of these kinds of prognostications.
So how to interpret the fact that half my unit is gone? There's an existential question. Here's how I'm working on it right now (subject to change, abject panic or worse, at any time): 1) every cancer is different, evolving separately from normal tissue and adapting to a hostile environment to the best of its ability; 2) the weaknesses in our genomes and immune systems, along with whatever environments we are exposed to, fall into some characteristic patterns; 3) what we see as patients and clinicians is a small but informative segment of the combined effects of 1 & 2; 4) outliving others with the "same" situation is mostly about the errors in classification (i.e. they weren't the same after all). In other words, familiar to those who have invested in mutual funds: "past performance is no guarantee of future results."
So we return to the small view. I feel pretty good, the blood work looks OK, the drugs (some of them?) are (probably) working. That's all the certainty there is. It's not really different from anyone else's situation, except that there is a good reason to think that whatever happens will happen sooner and in a very particular way. Meanwhile, I'll try to stick around and stay as healthy as possible while all the new drugs are getting tested.
