DE - DENIAL

In recent weeks, I think I’ve entered into a new and rather scary corner of the dark woods of Cancerdom. It’s like the Thieves' Forest of the Princess Bride. Here, instead of Rodents of Unusual Size, I have Anxiety of Relapse of Unusual Size. Instead of quicksand, I have colds (like the one I’ve enjoyed this week) where you sink into a 103 fever and a hacking cough before you know it. When you’re traveling through the deep woods of Cancerdom, the Fire Swamp’s methane bursts are the little aches and pains that explode into extreme fears and assumptions- a headache, a stressful week, a sore back, a runny nose—what is god’s name could it be besides pneumonia??

Don’t get me wrong, most of the time I’m the cucumber’s envy. So cool, in fact, that some confuse my defense mechanisms for strength or courage. (suckers!) And I think that’s why things are hitting me differently lately- I’ve borne a young person’s classic immortality complex, more or less. Denial is not something you “get over” all at once, in my opinion. It cushions your way throughout a process, buffering here, backing off there. Facing the trauma of how much chemotherapy sucks was one major de-denialing for me. Now, I think I’m facing another: I really could die from this stupid disease.

Ahhh, so that’s what all the fuss was about. This is serious business. My eyes fill up with tears as I type because I’m finally (I think) really FEELING this, really getting pressed down under the weight of what’s happened and what could happen. On one hand, I am embarrassed to discuss this because you might wonder how the hell it could be “hitting me” now. Of course, it’s “hit me” many times before, staining my awareness and outlook in various ways over the last fourteen months, but I have definitely noticed something heavier entering my consciousness lately, almost a respect, a respect which causes a chest-heaving sadness to well up, a tidal wave of powerful acknowledgement.

Why now? I have no idea. I finally realized that I should ask my doc what were my chances. You know, a common patient complaint I’ve read about is the insensitivity of oncologists doling out death sentence statistics. [Uma had quite the stoic doc in NYC who’d parcel out his grim predictions as if offering any compassion would mar his ability to function as an ICU neurologist. Perhaps it would.] Anyway, my med team has been just the opposite. So as not to frighten me, a "gays in the military policy" has been employed: don’t ask, don’t tell. So, it was only when my uncle Bobby asked me a month ago what the doctors were saying about my post-treatment recurrence likelihood that I realized I had no idea.

40% chance of relapse.

Yup, 60% chance of no more cancer. 40% chance of having to go through it all and MORE. If I got it again, apparently, I’d definitely get a bone marrow transplant. There is still no match for me, so they’d use umbilical cord blood, attempting to match as closely as possible to avoid all that fun rejection host-versus-graft disease stuff. 40%.

Look at me, obsessing over a statistic, just like I know not to. I promised Dr. Sirulnik that I understood that statistics were just rough guidelines, that I am younger and healthier than many of the patients that drag those statistics down, that I mathematically comprehend the concept of a median average. But shit- 40%.

Around a week later, Artineh called me crying. A nine-year-old boy she knows who had ALL too, of whom we had chatted over lunch in L.A. a week previous, had just died. His leukemia had been in remission but when he relapsed, his poor little body just couldn’t take it the second time around. Sweet Art was calling to tell me to take care of myself and in gratitude that I’m doing so much better. I felt confidant and strong as I assured her that I was fine and was going to stay fine, that my heart goes out to this child and his family, but she has nothing to worry about with me—look at me, I did hot yoga the other day! But, you know, it’s never fun to hear about the ones who don’t make it and people with ALL seem to be everywhere you turn- when you’re looking.

Then, this week’s Newsweek cover story highlights one reporter’s struggle with cancer. The giant Lance Armstrong bracelet on the glossy shell filled me with scorn- who is this journalist and why in the world does Newsweek think his story or perspective can represent the trillions of cancer experiences and perspectives out there? Then I read it and immediately soaked the damn mag in tears at just how common the experience is. I had to find a pen to start underlining because I found so many of his words mirror my own struggles and my own journey. The article is covered in red underlining, stars, and circles:

“A friend compares his semiannual scans to visiting a parole officer. When the scans are clean, it’s worth another six months of freedom, though with no guarantee of extra time for good behavior.”

“American culture rewards cheerful stoicism, a quality that cancer patients usually display in public but find difficult to sustain in private… I… retreated into a fog of unshakable misery.”

“an excruciating bone-marrow biopsy, which felt as if I were on a medieval rack.”

“Many patients place full trust in their physician and never second-guess them. I was constitutionally incapable of that, so I hit him with a barrage of questions. Why this chemo protocol and not another used by a different hospital?... why couldn’t he tell me more?”

“But a little knowledge can be a dangerous and depressing thing.”

“My sister set up an account… Instead of having to repeat my story endlessly on the phone or in individual e-mails, I could offer periodic updates, then watch in amazement and gratitude as the good wishes, parodies and embarrassing stories about me from fourth grade rolled in. The site kept practically everyone in my universe informed while easing their sense of helplessness- and mine..”

“I can’t even conceive how people without close family… friends and co-workers can survive the ordeal.”

“The experience changes your relationship with friends, as some who were once mere acquaintances step up magnificently and other who were closer fade away.”

“Others just wanted to know whether I had ‘beaten’ it so they could check me off as one less person to worry about. Even now, it’s just inaccurate to say that I have.”