me now

changing course

Our dear friends and family,
everything has changed since we last communicated with you. We have had to have conversations with close family, and especially our children before posting our news here, but we've been thinking of everyone who reads this and holds us close, knowing that we needed to talk to you as well...
Last thursday, Nov !3th, Brian had another biopsy, to determine the condition of his bone marrow in preparation for his transplant. We found out on Friday that the information from the biopsy was not what the doctors had been hoping to see.
The chemotherapy that Brian had already been given was not successful in combating the leukemia. In fact, in the month between biopsies, the disease had grown more than 10X. That growth happened in a matter of weeks. There may be other factors which led to the decision of the medical team not to transplant--we will be able to ask questions like this tomorrow--but the fact remains; Brian's bone marrow is too sick to give treatment to. The team of doctors has told us that all they can do is to maintain Brian, for weeks or months, as long as his body can fight off a serious infection or avoid a major bleed.
I feel the sadness of everyone who is reading this. Its so difficult to write.
I want you all to know that we are well and happy within everything that is going on. The kids are on their way from Salt Spring today, and we can't wait to be all together. Our hearts feel so strong with loving and being loved. There will be many kinds of days in the weeks ahead but there is an abiding sense of healing in the face of dying and of the permanence of love in the face of loss. I am thinking of Pete Seeger singing " we shall overcome..." . Go, find it, listen, its a favorite of Brian's. And, oh ya, let's have a party. Ok, its Brian's call, but lets all start imagining celebrating him together.
Love,
Joanne

premonition of a Tree

Hello Everyone!

I'm feeling better and my appetite's good!

My Mom has been sending me some photos of things I've made and the carving above is one of them; I made this head while working at Lake O'Hara about twenty years ago. At the time I remember thinking while carving it that it looked like Tim, one of the managers, who was somewhat challenged in the follicle department. (I know Tim doesn't mind a little good spirited fun poked at him}. I even put a couple of lumps on the head, 'cause Tim was famous for bumping his nogggin while splunking around in crawl spaces, cisterns, and septic tanks.
But check out the crooked smile! It's not Tim, It's Me!! My chemo therapy has me completely bald now, just like this guy (I think I named it George). Anyway, the resemblance is uncanny and I couldn't help but wonder if the whole thing was this big chunk of a tree showing me my future self.
I switched hospital rooms the other day at the urging of a few of the nursing staff. My room was cold and North facing and the one available was warm and South facing. After making the move it felt completely right. That was the room I was sick in and this will be the room I am well in. It really feels like I've past through the worst part of this illness (knock on George) and There is an endless well of gratitude to all of the friends and family out there who helped with their healing energy sent my way.
There's also a fellow named Thich Nhat Hanh, a author of Zen Buddhism who helped me greatly through the hard times. We took many quiet walks together and sat for what seemed like days by a clear flowing mountain stream. He helped me manage my pain by holding it like a small injured child and rocking it until it was calmed. Embracing rather than fighting.
I have so much to learn.
Thank you for your love.
I have never felt so grateful
so human
so held.

Brian

Breathing a sigh

Its day fifteen, counting from the beginning of Brian's chemo, and we're experiencing a reprieve--from many things, pain, crisis, fear, to name a few. On this day a number of issues seem to be settling down. Brian has had his first solid food for breakfast, he no longer has a catheter, (and all the pain that was going with that), and at last his fever has come down. These are some very good signs.
As I write, Brian is watching CNN's election day coverage. This is the first TV he's watched in age...; what a moment to tune back into the world. The mood of tentative optimism extends, it seems, beyond this hospital room. Can something good really be happening? Do we dare believe? Too late, our hearts are already open and exposed. We do hope.
We have a new team leading his care here on the ward. Its a normal, monthly rotation, but we're pleased with our new Dr.'s.
The Fellow likes Brian's sense of humour, which has begun to surface again. And they call each other Matt and Brian, instead of the more formal options. His Attending Dr. is a beautiful white haired woman with a great sense of softness and eyes so blue they seem electric.
So, I think that all my birthday wishes are covered; Brian feeling better today, and maybe, it looks like, a young, profoundly intelligent, visionary, heart-centered, evolutionary, BLACK man, will soon become the single most powerful figure in the world.
Sigh.
Keep up the hopes and prayers, for Brian, for all of us; this whole world needing healing, unity, tenderness and understanding.

I love you all, feel we are so blessed to be held in this amazing circle of care.

Joanne