hatching up something

I'm sitting and nesting on Something Really Cool right now - blogville will resume after the urge to squawk and flap around overtakes me. To quote Julian of Norwich, All shall be well. All shall be very well. 

Which when ya have a stinky-assed blood cancer even in remission, is really nice!

FAQs and Glossary of questionably useful terms

With the startled realization that not everyone who finds this blog has followed my trudge from the start, I thought I'd intersperse the tales with a bit of a catch-up. Any resemblance to accurate and reasonable terms is completely accidental.

AML: Acute Myelogenous Leukemia, a fast-growing blood cancer that strikes perhaps 13,000 people each year in the U.S. and, depending on which web site you stumble upon, kills roughly three-quarters of 'em in spite of state-of-the-art treatment advances in Western medicine. Its appearance is sudden and rarely correlates to external circumstances. Untreated, it will kill you in 3-4 months. Treated, well.... that's another story entirely......  There are many many types of AML (not to mention the other leukemias). On October 27, 2008, I was practically flung into the hospital for Induction chemotherapy after simply thinking, "Damn I'm tired. I might need more B-vitamins or new jogging shoes or.... wait, whaddaya mean I have a platelet count of 17 and a life-threatening condition? You're scaring me!" Mine emerged out of MDS, or 

Myelodysplastic Syndrome: No wonder no one wanted to talk about it when I was first vaguely diagnosed in November 2007. The cartoon balloons of "huh??" over most folks' heads dissuaded me from even attempting to unpack it. Funky bone marrow is what I called it. It is not cancerous itself although 30% of the time it will flip into AML. It gave a rather glowering name to my several years of low blood counts (WBC & RBC & neutrophils). I'd only been aware of these counts since perhaps 2006 as for decades I'd shunned most of conventional Western medicine in favor of chiropractors, acupuncturists, nutritionists and a wide assortment of healers, some Godly and some, well, not. A CBC? What was that? Maybe it's my adrenals or something... Ably I attended to other issues for most of my adult life. By my late forties however it occurred to me that real grownups had a GP and got a yearly physical.

Chemotherapy: I have serious issues with this, which according to most of Western medicine is the only way to treat as aggressive and mean-assed a cancer as AML. I have had two brutal rounds of it, the "7 & 3" for Induction and "FLAG" for 1st Consolidation (for those of you au fait with chemo code). It's poison. It makes your hair fall out, fungi threaten to ravage your body and sometimes neurological damage. It kills most of the cancer cells and whatever else lies in its path. The game as I understand it with AML is to kill as many cancer cells as possible without killing you in the process. If you're lucky enough to be considered for a bone marrow transplant (BMT), that's the procedure that completely obliterates your immune system (myeloablative) before they transplant a kind-hearted donor's into you. The survival rate for this procedure is roughly 50%. One-third die from the procedure and another 20% die in the several months following it. Look up graft-versus-host-disease (GVHD) if you're interested.

Hospital:  A prison-like environment where the probability of dying increases exponentially with the intensity and complexity of your treatment. That said, it is also where certain angels (disguised as nurses) are known to work. 

Remission: A reprieve from the ravages of a disease. Cancer cells (aka leukemic blasts) are nowhere to be found. But they'll be back. There are two or more hiding in your big toe and they're waiting. Rather than celebrate a permanent cure, which this is not, it's a waiting game to see how much chemotherapy (see above) can be pumped into you before you fall helplessly and suddenly into a...

Relapse: It's back and you're screwed. Go back to square one, repeat Induction chemo (the most brutal of them all), repeat others, have worse odds. Rather than risk relapse, many to most oncologists prefer to slam you back into the hospital every 4-6 weeks until a bone marrow donor is found. Some leukemias CAN respond to chemotherapy alone. I am told that mine is not one of them. For MDS-AML (my not favorable 'subtype'), consolidations alone give me a 10-20% chance of long-term survival; a BMT bumps it up another 30%. 

A Miracle: '...is a coincidence where God chooses to remain anonymous'... and an attitudinal shift whereby gratitude outshines fear. We know that death happens. Normally when we don't necessarily expect it, although living in hale and hearty vigor until one's eighties, say, and then passing peacefully in the night seems to be a Universal ideal. I once said that I wanted to die with my boots on. If pure choice had been that powerful a manifested option to me, I might've been wise to have visualized a few more decades of sterling health to my present challenges. 

Prayer: The love, intentionality, spiritual and religious supplications, candles, chants, breaths, cards, chocolates, letters to God, fist-pounding, walking, meditating and beingness from blessed ones. From myself, gurgles and sighs to a Power greater than myself.

Attunement: The opportunity to allow all of the aspects of myself to have a voice, to be validated, heard and held. Seeking wisdom in the presence of a respected Other, such as with my Spiritual Director and a few trusted friends. Contemplating options that may fall outside of the box. Risking that my inner wisdom may have a valid message for me and that hearkening to it may involve breathing through others' disapproval (Alanon moment here). 

Acceptance: The Serenity Prayer. 

Remission

The last of the cytogenetic tests came in and I remain in remission. A big exhale for now.

I am enjoying each day of feeling stronger and more present. I welcome an increasing return of my life force. This is precious.

I would like that anyone posting an Anonymous comment to leave their initials, at the very least. I prefer not to publish them if I don't have a sense of a someone connected with the comment. Thanks for that. 

This candle is from my church. It says that the Holy Spirit is present, specifically in the reserve Sacrament. It is always lit except from Maundy Thursday through Easter, when Christ's resurrection is celebrated. This is my theme for tonight. 

Just when you thought I might actually be grateful....

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.....