midway and here now

I am so looking forward to linking to a new blog name and adventure! I'll let this reveal itself once over in bonnie Scotland. I write now from Roswell, Georgia - the home of my dear friends Susan & Klaus (& Kelsey & Fiona & Nova & Skye, their kitties). I am, shall we say, more than a bit knackered from the past few weeks. 

This is a 2003 artist's rendition (in case you were wondering....) of the Fisherman's Bothies with Tony & Ali standing next to the tree on the left! The grounds look sedate compared to their exuberant lushness today. God willing I shall arrive there next Tuesday, April 6th. I'll leave Atlanta early afternoon on Palm Sunday, and fly IAD (Washington Dulles) to LHR (London Heathrow) to EDI (Edinburgh Airport). At 10 am on the 6th, friends I've not seen since 2001 will greet me in Edinburgh, share time and tea with me, and then take me to the Edinburgh Waverley train station where my ticket awaits me in a little kiosk. At 1:35 pm local time I'll hop on the train and then really hope that it stops in rather than chugs past Aviemore as well as Forres to which I had originally booked. I'll sit on the train, drink tea, write, stare out the window. Okay okay, I might buy a few biscuits (cookies to my American friends) from the trolley.... Tony will scoop me up in Aviemore (again, we hope!) around 4:30 pm. 

Getting to the Highlands of Scotland sometimes takes a very long time. 

Today and each day this week I will breathe. I will also be with my friends and their curious felines, walk, jog if I can, weave in necessary admin, sing and reunite with some of my shape note friends from last summer (woo-hoo!), find local 12-Step meetings, and breathe. 

a different flavored healing path

I was last sprung from the hospital on January 2nd, 2-1/2 months ago. It was my 2nd 25-day stint called a Consolidation; the 1st was the rude awakening of Induction chemotherapy last October. While each week I watched myself grow stronger and more vibrant, I was penciled in for a 2nd Consolidation (3rd round so far - keeping track?) in mid-February. "Until we find a bone marrow donor," intoned Dr. K and nurse Rob, "we need to have you in the hospital every 4-6 weeks to make sure you don't relapse." I blanched. I cringed. "....but my numbers keep coming up.... and see how good I feel!" I burbled. My fears saw the white coats morph into the big bad wolf while they seemed to sneer, "... and all the better to pump you full of chemo with, my dear." I felt like the Christmas goose being fattened for the meal. 

It was becoming time to go back and I didn't want to go. So I prayed. I scoured online. I made calls. I kept jogging and taking the simple vitamins I had been forbidden to take. My friend Stacey sent me an email late one night; "Aren't I taking you to the hospital this coming Wednesday?"

"Let's talk," I wrote.

And so we did. We met at Aroma Cafe in San Rafael before my choir practice. I was nervous. I had to tell her first, though, and I did. She looked at me and said, "I get it. Enough is enough already."

Now I'm sharing with you that after not a small amount of prayer, meditation, journal writing, research, medical consultations and more, I have decided to suspend the continuing rounds of high dose IV chemotherapy for my leukemia and instead embrace not only today's continually robust remission but several avenues of alternative healing modalities. I am doing this with the awareness and acknowledgment of my medical team. (Ok, so they didn't throw a party congratulating me). I have looked them all in the eye and shared this from my heart and innermost being. No bridges are being burned with high drama flourishes of "watch me now!" To quote one of my oncology nurses, "I know of people who are alive today who've had one Induction and one Consolidation.... I know people who have said "no" [to the traditional allopathic trajectory]... you can make this decision today and you can redecide a month from now. It's cool to take a hiatus...."

When I first considered even asking this question, it was along the lines of, "... if I stop now, how much time do I have?" I hadn't even given myself permission to contemplate that some working in Western medicine knew of long-term acute leukemia survivors who hadn't exactly played by the books.

I shall take this hiatus in northeast Scotland, staying with close friends of the past nearly 20 years. Tony & Ali live in and rent out restored 19th-Century "bothies" (pronounced bah-theez) and are often booked two years in advance. They text-messaged me from their holiday in Madiera when I was first hospitalized. I've written about them in earlier posts. Click HERE for a Scottish Highlands photo Gallery!

After a nearly 6-year run, I am leaving the Bay Area on March 30th. I will return only to visit, if that opportunity is available to me. 

As of April 6th and for up to 6 months if my health and Her Majesty's Immigration seem to be on the same wavelength, I will be here: Fisherman's Bothies, Mains of Sluie, Dunphail by Forres, Morayshire IV36 2QG, Scotland UK. I will suspend my (415) cell phone for 6 months. As for the (510) number, we'll see if I hook up my traveling Vonage VOIP deal. Email works best while I continue to whine that I gave up long ago trying to be reasonably responsive. I'll be busy healing and living! 

(Yes, it's Fisherman's and not Fishermen's. I fought that one for years and lost). 

For a week en route over and - God Willing - after my 6-month "tourist Visa" nudges me back Stateside, I shall stay with my dear friends Susan and Klaus in Georgia. Next steps will be taken as they're encountered. I can dream dreams and have intentions, however with this leukemia I cannot make plans. It's a delicate balance and oftentimes the poise between the worlds becomes weighty. For now exhilaration wins out while I am become just a little teensy bit Krispy Krittered with the Great Undoing.

I don't know whether I have 20 years, 2 months or 2 weeks of good health. No one else does, either. "Only God knows," said an oncology nurse. "We don't." This particular leukemia can return without warning and regardless of the number of Consolidations or whether one has gotten a bone marrow transplant. That procedure alone carries 50/50 odds of survival. Since October 27th, I have spent 50 days in two hospitals for two wrenching rounds of chemotherapy and antibiotics, with a half a million dollars billed to my now far more expensive insurance policy. Did I mention the thousands of dollars in co-pays and being sidelined in my work and spiritual pursuits? Luckily I have had some savings to live on frugally. My frugality continues while my heart is dancing a "shhhhh, don't tell, it's Lent" jig.

I am grateful for this remission and I am going to ride it out as long as I can. I am neither "giving up" nor planning to crawl away and die. Should I fall very ill again, I will have the opportunity to seek Western medical care either overseas or back here in the States. The idea of getting pumped full of chemo at this time to prevent me from relapsing, while I can understand the preventive methodology, lands like a thud in my solar plexus. There is a tipping point where the treatment causes more damage than the efficacy it promotes. Few physicians have a clear handle on that. If my intuition and sense of calling fail me, clearly I will have to accept that. 

Once I am over the seas, I will create a new blog, releasing the thoughtform of the paradigm gauntlet this has been on many levels. I'll link the new name here. I want to close out this theme with this news.

Many of you have prayed for me. Your love and your caring are elixir to my soul. Thank you! I ask that you please keep praying for my increasing wellness and as well that I may continue to attune my ear to God's guidance. Your prayers - whatever is prayer for your spiritual path - matter more to me than even the finest Western medical care. While I thank my Creator for the gifts of most of my medical team, you don't think I'm still kicking around just because of the chemo, do you? 

Onward!

22 years sober today!

I'm flapping out of my hermit henhouse long enough to jump up and down and squawk that I am grateful INDEED to God and the company of (those) fellow path walkers to celebrate 22 years of continuous sobriety today. One of the Traditions of my secret club suggests strongly that I not mention its name, but y'all know whose doors and rooms have welcomed me since early March of 1987.

I am SO darn grateful. 

The cake visual and sumptuous yum was from my 2008 July birthday (the belly button kind) with Susan & Klaus in Georgia. Can you believe I took a 2-month, 8000-mile (nearly) road trip and then 60 days later was hospitalized with leukemia? What timing, eh?

As for "the other disease," I'm still hatching up a Plan and praying my way through it. There is as well not a small amount of physical doingness involved. I should have Something to say in a few weeks. I shall plagiarize Tom Robbins and cackle, 'ha ha, ho ho and hee hee!'. 

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.....