My elation lasted a few hours on Friday. My good friend, childhood pal and occasional medical advocate Stacey had come along to hear Dr. K almost but not quite sort of kind of tell us that it looked as though I could still be in remission. Perhaps. We thought. For the most part. As the hours and days have melded, the inability of many in the medical profession to give utterly clear information more than 10% of the time has grown on me.... kind of like too-strong coffee does when you've attempted to ease up on such pungent lusciousness. (Raise your hands if you can tell I love coffee). The mug is empty but your tummy is still scowling. Wait, I've savored a delicious cup, I should be really happy, what's wrong with me?That's only part of the reason for the jolts of distress. The "good news" is frankly that I am given an opportunity to continue on a path with huge challenges and absolutely no guarantees. Sometimes I feel like I'm at a carnival, with bright-eyed shysters hawking their wares while I just wish I could get a straight answer without trying to beat it out of them. Is the merry-go-round a quarter or not? Won't you just tell me straight out? They chirp that I'm "young enough" for a bone marrow transplant, meaning I'm 52 rather than say 72. "This is your best chance!" they smile. What they don't add and would be a lot more honest is, "... if you live through it." Fully half of the patients who go through an allogeneic bone marrow transplant from an unrelated donor die from the treatment. Let's see: Will I wait and have the leukemia kill me or sign up for this?
Yes, I'm basically (I won't repeat the word game again, you can relax) in remission. I'm not cured. Cured is 5 years of survival. If you make it that long, you are SO a winner. "Early Christian, you have been released from the lion's jaws!" But I'm still in the arena and I want to get OUT of it. No lions, no den, no cheering Romans. Can't I just leave now?
If I were a movie - and I am not - this is where the close up shows my tortured face slowly transformed into boundless faith, fervent conviction and passionate determination. Cue the soaring music; "I'll beat this thing, you betcha!" I know I watched films like this from my childhood. It's a classic and universal theme. "When the going gets rough....." and bla-dee-bla. If I really wanted to be impressive, I wouldn't even post such doubts. But that's not why I created this online world called a blog. If I wanted 24/7 applause, I'd have a friend Photoshop me as a foxy 22-year-old and post it around the Internet. This is a space to share my honest and sometimes messy path and, when I can, moments of vulnerability, even when they aren't MGM inspiring.
I don't want to go back into the hospital for a 2nd Consolidation. Some folks have four of 'em, and this is after Induction, that thing wot kills 25% of the folks who try it. My hair is growing back, for gosh sakes! I have peach fuzz on the top of my head! My 15-25 minute jogs around the neighborhood are growing in strength and pleasure, a far cry from the puzzled exhaustion last October when I was becoming leukemic and didn't know it. When I don't jog, I make sure I'm out walking briskly for at least 45 minutes. I FEEL stronger. I'm poking around with my work/investment research, although actual income production continues to elude me - for now. My life force is asserting itself. It is so beyond counterintuitive to know that the medical profession has my ass tagged for another round of poison to keep me in this "first remission." I guess waiting until I'm skating on the edge of relapse isn't a terribly bright idea. Until the bone marrow transplant dance happens, which could take 2-6 months, I am told that there's a bed in the oncology ward with my name on it every 4-6 weeks. Today is Week 4 and I'm crouching in resistance.
This leukemia is such a pain in the ass.
In rebellion and affirming that I have CHOICE, I made a big ole batch of Essiac tea. Folk tales allege of its cancer cures (it's very Google-able). I take an ounce at bedtime with 2-3 ounces of boiled water. I'd also asked Dr. K about taking vitamin supplements, nothing more outlandish than a multi, Vitamin C and Omega-3 fish oil. "No," he said firmly. "Medical journals do not report that they have any particular efficacy." I bowed my head and sulked for 2 days. I then thought, "NO ONE is telling me that I cannot take vitamins." When I'm in the clink, I am compliant. When I'm getting inundated with chemo and then antibiotics, my sense is to let 'em do what they're supposed to do. I'm home, I'm free, I'll take my vitamins. Sometimes I'll even make fresh organic juice (carrot-apple-beet-ginger).
And for today, strong organic coffee in the mornings. I struggle with gratitude but I am not devoid of some pleasure.....
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