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.