On Tuesday night I was texting a friend and tapped out “Also, I’m feeling a littl” and stopped short. I meant to write that I was “feeling a little ill,” but shrank from what suddenly seemed a mortal threat.
The first warning of my brain tumor, two years ago, was just such a feeling: a little nausea mixed with a light headache and general malaise. Now, as then, it seizes me but subtly. Many times I prepared to leave work early, determined to be ill, but no sooner surrendered than it let me stay.
I can blame it on the waters of Casco Bay, this time. I’d practiced rolling my kayak there, the day before, and sucked plenty of it through my nose and sinuses. The city’s sewage treatment plant is only a quarter-mile to the north and the wind was coming that way. Another “plausible explanation,” perhaps?
It’s been two years since my craniotomy. I marked the first return of May 5 with a lot of introspection, looking back at what I’d endured and looking ahead to what I might dare to accomplish in the few months remaining of my allotted time.
May 5 came and went, again, but no desires nor fears were pinned to the tenuous scope of my life, as before. Last summer’s trek to Bar Harbor settled the matter of killing myself. I decided to live, and haven’t regretted it.
I ponder my fate less often with each passing month. I have a feeling that I’m leaving my cancer behind. Do I believe it will never come back? Am I fooling myself to think so? Statistically, yes. The numbers would say so, if I bothered to look. But I haven’t.
An uncertainty once perversely optimistic, as a refusal to expect this death, now seems less willfully opposed to probability than simply disposed to chance. In explaining the contradiction that I have terminal brain cancer but no known tumor, my words have become less clinical and more dismissive. The “miraculous asterisk” has become the “giant shrug.”
At my last appointment, my oncologist said, for the first time, “you don’t have to come back in two weeks.” I might have asked “what does that mean?” but it seemed pointless, or just obvious. Does it mean that I’ll live? Does it mean that I’ll die? Yes, and, of course, yes. He doesn’t know and won’t guess.
Last month I had to skip an Avastin treatment, for the first time. My urine protein tested high: something to do with my kidneys. At first I was stunned, then despondent. As an inhibitor of new blood vessels, Avastin seemed custom-made for fighting “highly vascular” tumors, such as mine was and may be again.
I remember asking him, some time in 2011, how long I would need to be treated with Avastin. “Indefinitely,” he answered. I thought he meant “for as long as you’re alive,” though “I don’t know” is valid, too. Now he explains that Avastin can not be taken indefinitely, as in “not forever.”
My last MRI, in March, showed increased blood flow at the tumor cavity, according to the radiologist’s report. But my oncologist shrugged it off. “It’s not something I would worry about,” he said. And, perhaps, even if it is a sign of recurrence, he has offered prudent advice.
I remember that the first thing he ever said to me, after “hello”, was “no one can tell you how long you have to live.” The subtext, “… at least, don’t expect me to decide,” was never spoken more clearly than at our most recent meeting, by his moderate, supportive but detached tone of voice.
He doesn’t know and won’t guess. Or is it that I don’t want to hear? To hear “come back when your foot goes numb and you wake up with a terrible headache and promptly throw up and the nice lady at the CT scanner delivers the news with ice, that she ‘found something,’ again” and start dying all over.