Friday, May 29, 2009

ice cream in the sun

Eighty degrees Fahrenheit in the tiny village of Findhorn! It felt even warmer inland, away from the delicious wisps of ocean breeze. We'll have a sunny weekend here, we're all told, and then the variables of Scottish weather will return. Invariably. 

My friend Ruthie (of horseshoe-finding fame) and I took a few hours and wandered on the beach at Findhorn village, with a side stroll for ice cream. Bring on the raspberry swirl with a chocolate flake on top! Bring on the old friends we ran into on this warm bayside stroll!

I've not written about medical issues because I have been living amidst them as well as pondering ways to communicate how they've landed in my psyche and soma. The most expedient way I can share the latest news is that today, my condition is stable. This is exquisitely GOOD news for my inner and outer worlds, since for about a month I was under the impression that I was in early relapse and prior to that was worried that I might have been.

The last visit on May 21st to the Aberdeen Royal Infirmary gave Tony, Ali and me a consultation with Dr. Culligan, the head hematologist/oncologist there who specializes not only in AML but with the MDS twist that I have. I've gone on and on about those (with links) in my former blog. If you're unfamiliar with either of them, they're easy enough to Google but not quite so much to live with or weave into a deep understanding. Dr. Culligan was able to take the print-out of my last California bone marrow biopsy (March 24th) and connect it with the April 28th one at Aberdeen in a way that profoundly shifted my outlook and prospects. Several weeks prior, another oncologist had said, " have 6% blasts," and I was hugely disturbed. It was not until weeks later that Dr. Culligan speed-read through the grossly complex terminology of the California report that I learned that it had noted "... less than 5% blasts." Not zero. Zero blasts was what I had in the hospital, along with near zero counts for weeks on end. "Less than 5% could be, say, 4%.... so 6% isn't that much of an increase. You're basically stable," he said and I nearly fell out of my chair with relief. 

Having only blown through it quickly, I had interpreted the California report as noting zero blasts. I was mistaken. And in that error of perception, a leap from zero to six was terrifying. I don't blog when I'm scared spitless; I pray, I walk, I write on my own, I breathe, I study, I pray. 

Dr. C. was brilliant. He spoke to us in a wholly thorough manner without either sailing over my head or having that pat-pat "there there now" vibe that can leave one feeling that asking just one more question really isn't what they're there for. He also validated my need to take a hiatus from the hospitalized chemo. He was the first physician to have done so. I had followed my heart and intuition by saying "No more right now! - I must have a break from all of this"... and Dr. C. said, "I wouldn't have you go in for another consolidation right now. Your counts are very low. Sometimes they don't come back up." I was stunned. I was relieved. 

We discussed a bone marrow transplant. Up until arriving in Scotland to begin this healing time amongst my friends here, everything has been such a one-thing-after-another tsunami that the idea of a bone marrow transplant was this thing that was bandied about as a "good idea" for me with my "best chance for survival," but no one had bothered to explain exactly why. Embedded in any American doctor's visit is the edge that every word is measured out and that they're prepared to race out of the room at any moment. The atmosphere is never ever one of "how may we explain this to you, this terrifying cancer, in a way that can help you feel more assured?" Of course they mean well. Of course for the most part they are brilliant technicians and even very nice people. But that sense that you can take an extra few moments to collect yourself, breathe and then articulate your fears to them is not a given. "Ok? Great. We'll see you in...." 

A bone marrow or stem cell transplant could be my best chance for survival because of my underlying myelodysplasia, the MDS. Without a transplant, my broken marrow will likely continue to want to replicate the conditions that will be waiting to spell relapse (e.g. return of the leukemia). I can get chemotherapy until I have no neutrophils left. My chromosomal abnormalities (specifically Trisomy 8, the naughtiest one) will keep telling my immune system to go haywire. Which is really rude, if you ask me. With a bone marrow transplant, its considerable dangers acknowledged, I have a chance for long-term survival. 

Without a transplant, I still have a chance for long-term survival. I am told however that it is very low. Not impossible, but very low.

Huge levels of fear dogged me before. All I could think was that I wasn't going near something that gave me a 50/50 chance of survival without a hint as to how I could be on the "let's have a good time!" side of the 50%. I wasn't willing to put my life on the line for such a crapshoot. Additionally, the months of after-care was not something I could wrap my head around in the Bay Area. My friends here said, "Come." And I did. And I have. 

After a weekend of allowing this hopeful news to sink in, I've told Dr. C. that I'm up for it. And I can change my mind, as well. "There is no right or wrong here with your decision," he said gently. "It's really up to you." The unspoken messages I got in California insinuated that I would be a raging fool for not doing as I was told.... to belly up to the bar for so many consolidations, and then the BMT (transplant). Today I am willing to explore and to learn. I have given myself the time to be present with life, to ponder death, to see how much I can show up for each day whether I'm exhausted or elated. 

Regardless of what I do, from ceasing further allopathic treatments to having a bone marrow transplant in August, playing with prognoses is a recipe for having a seriously bad hair day. My prognosis sucks most ways of looking at it. However, as my fingers tap on my keyboard at a little corner of the hub of the house, looking out to the exploding gardens on another brilliantly sunny morning, I am alive and well NOW. I can create dreams without that former sense (or delusion) of feeling that I could carve them in concrete. 

We drove through an enormous hailstorm on the long trek home from Aberdeen. Ali hooted at its noise and ferocity. Tony ably navigated my little red car while I thought, "Damn, it's sure noisy." We stopped for a celebratory meal at Morgan McVeigh's, a glorious tourist spot midway between Aberdeen and Forres. I treated us to paninis and juices. We stared at one another, quietly exhaling relief.

The gardens here are leaping out of the ground in vibrancy. I've planted potatoes and pansies. I've picked lettuce and rocket (a wickedly sharp herb like turbo-charged arugula) for our dinner salads. I'm even beginning to tiptoe back into investment market research, something that has been on hold forever. I am reinvestigating what is and isn't "guaranteed" in this life. I will share as I am able, when I feel that I can sit here and say, "Here I am." 


  1. I love your new blog: vibrant color, exquisite blossoms, new title and most especially love this post. Here is a celebratory hug for you and happy feet dance...

  2. We are so deeply filled with Happiness and Joy to hear that Your condition is stable. And also that You have a Dr. who not only knows his stuff but who can communicate compassionately and clearly. I am sure having Tony and Ali there with you helps enormously as well.

    We send You All Love, Prayers, and Blessings.

    Susan, Klaus, & Kitties

    We Love Your new blog space!