Life in the hood
Me all dressed up to go out
An' here I sit so patiently
Waiting to find out what price
You have to pay to get out of
Going through all these things twice.
Waiting to find out what price
You have to pay to get out of
Going through all these things twice.
Bob Dylan
Day 31+ Starting my second month. And if that picture doesn't scare you, not much will.
The struggle now more that ever is to still give meaning to each day, let alone each moment. As I am doing better, I am more and more looking to direct my focus on tasks other than healing. Post CLL and transplant work.
I am also alone more, as I don't need the constant babysitting. Tonight, my family is at another of my son's art opening tonight (see http://killmecomix.com/) where he is sharing the spotlight with other comic book artists including Bob Crane, the creator of Batman, Jack Kirby, Rick Griffin, Robert Crumb, and William Stout. Pretty cool! I went to see the show briefly before it opened to avoid the crowds. You can see my costume for the occasion in the picture above. Last night, Will's muse, Laura Breski, had a successful gallery opening for a one woman show. Check out http://www.laurasstitch.com/index.html
Despite my protest to the contrary, maybe I am not quite ready to move on. I still have this neurotic pull to exam the underbelly of my disappearing disease.
It is true to say that not nearly all my healing is done. Next week I get the results of the critical engraftment studies. These test look at a small number of blood cells by type and then check their DNA (actually HLA) to see what percent is donor and what is recipient (old me).I have been desperately researching the order of cellular and immunogenic engraftment and reconstitution post transplant, but I appear to have broken the mold and I can't find studies that make sense in my circumstances. Most people lead with neutrophils and when they are above 500 (often day 14 or so) you are considered engrafted, but I was 100% recipient on day 15+ and my ANC was 450 that day. I reached 800 just two days later on day 17+ and never looked back. Last ANC was a perfectly normal 4,100. I ask myself, whose cells were climbing up the charts? Platelets usually engraft even later, but my nadir was a normal 160,000 on day 2+ and climbed from there. Were these my old platelets or the new ones? You can see how a little bit of knowledge can be crazy making. My docs aren't worried as I blaze this unusually benign path, so why should I? That is what I am telling myself. And for the most part I am listening.
A bone marrow biopsy on day 50+ will give info about both engraftment and any residual CLL hiding out in the bone marrow. A flow cytometry test should be back this Monday looking for cancer in the blood again. My routine last labs were good except for a low lymphocyte count. Again, Dr. Forman couldn't be less concerned. But donor T cells are lymphocytes. Doesn't that mean something? If my lymphs are falling, are my donor T cells falling too? Crazy making!
Roof brain chatter!
And as all this hastily built house of cards and worry beads, collapses in the fresh breeze of the clear bright facts next week, I will still have the real issue of an immune system that will be a year or two away from any heavy lifting.
You see what I have to deal with. My mind that is not always steeped in Zen silence, but seems at time more caffeinated and cacophonous, maybe from all that green tea. We all struggle at times to be calm and focused.
I have some exciting projects that are starting to take form. They will give my mind a different place to play that the world of CLL/transplant. I will share my plans soon. Hint: they involve medicine and writing.
posted by Brian Koffman at
8:37 PM
5 Comments:
Dear Brian,
You are describing a common phenomenon, but you gave it a new, clever name: brain chatter.
I've been there and found that it helps me to differentiate "figuring out something (so that I can change what I'm doing if indicated)" from "trying to know something I can't know, and that won't change what I'm doing even if I could know it."
No matter how your blood components are reconstituting themselves now, you can't "undo" the transplant. And it sounds like your doctors would continue to "watch and see" if they did all the tests today and tomorrow and the next day, and they found you were continuing to have an unusual recovery pattern.
I consider my brain chatter wasted time and emotional energy. Since I am determined to keep my illness from stealing good time (as much as possible), when I found myself in the midst of brain chatter, I use one of my mantras to get out of it ("This is a waste of time." "This is not helping." "This won't lead to a change in plan." Whatever.)
Sometimes, I need to take action and start doing something that engaged my attention, so the brain chatter faded into the background. You know, writing something. Running errands. Visiting with someone. Retail therapy.
It worked for me. Just something to think about.
With hope, Wendy
I feel confident that both doctors (Dr. Brain and Dr. Forman) are taking good care of you so sit back, enjoy the time you have with little to do but reflect and ponder the days that you were once CLL positive. Day 101 here you come.
The picture is great and you look like a man on a mission. What that mission is, I do not know but the intent and determination is there.
Talk to you soon, Your CLL Friend
Robert
And I thought the Unibomber had been captured?? Nice to see you outside!
Hi Dr. K,
Ok, way too much time on your hands......we need to get you something to keep your mind occupied.
Love you new outfit....Nordstroms?
J
Dr. BK the Super Hero from the planet Vegan.
Read the book, see the movie, cuddle the action figure, play the video game.....
Dr. BK always had super powers, but it took Earth's atmosphere and his love of the Human Race to make him a Super Hero....to everyone he touches. Welding a bag of blood oranges, his only weapons against whatever obstacles he encounters.
This promises to be a very long lived saga, move over Super Man. Dr. BK's healing powers will grow stronger with each of the countless Earthlings he saves from dispair. Every melody and lyric feeds Dr. BK's lifeforce, resulting in a power that can not be diminished.
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