"I want to tell you. I feel hung up and I don't know why" The Beatles

"To be or not to be isn't the question. The question is how to prolong being."

Here's a letter I just wrote to a friend, my favorite author. It provides an overview of my story June through September.

I had the bone marrow biopsy today. All I can say is OUCH! Not that bad really. Dr. Forman says the main thing he is looking for for any CLL that might be hiding in deep in the bones, not the percentage engraftment. On the way home, Patty and I walked through a surprisingly wild and woodsy trail with dappled and turtled creeks and lakes, all of this, believe it or not, in Long Beach. It is good to walk after the biopsy.  Doesn't let those needled muscles and bone stiffen up. Truth be told, it is good to walk any time. Especially in nature. Then take a long nap.

Sept. 3, 2008

Dear ----,

Much has happened since I last wrote in June about my then planned bone marrow transplant. It happened, as scheduled, July 1.

I have hesitated to contact you until I had some clarity on my progress in morphing to a chimera, on the road to a cure, but that might be a long wait.

I received my IV shot of redemption, my new immune system, in the form of stem cells packed in ice, then quickly flown by courier after being donated by a 22-year-old Israeli Yeshiva student who was a perfect 12/12 match, my biological doppelganger. My hospital course was unusually easy, and to everyone’s’ surprise and delight, I was shipped home only 3 weeks later.

I am now bald and on a most restrictive low bacteria diet. I must wear a special mask when I leave the house, but I am home with my wife and, until last week, my kids. The pets and plants are still off limits.

Not a single major complication. I just tire easily. And I fight the ennui from being stuck at home for months to come.

I am planning to write. Non-fiction. Now that’s work that makes a transplant look like a walk in the park!

The big issue is that I have been excessively slow to engraft, or have my donor cells dominate my blood and bone marrow. I am still what is medically called  “ mixed chimerism”, part donor, part old me.

T cells are the generals of the immune system that give the marching orders to the other white blood cells, the killers and the helpers of the immune system. Mine are a healthy 2/3 from my young student rabbi donor. Trouble is that the troops have been most stubborn, refusing to fall in line and my peripheral blood is only 28% donor, down from 32% last month.

This might be perfect and I may be walking a gentle and slow Buddha-like middle path that is both keeping me from the dreaded graft versus host complications and at the same time providing enough of the new immune system (my old one was corrupted by the cancer) to search out and destroy my leukemia. The best of both worlds. The holy grail of the transplant world.

But it also might mean that I am rejecting the graft and may need to start the whole process all over. That is not only trying, but risky. Tomorrow I am having a bone marrow biopsy, which might sort this out, or not. I pushed my doctor not to wait a month to literally drill for more information. The biopsy will at best relieve my false worries 3 weeks sooner or at worst, allow a prompt response to a most difficult situation, before it is a fait accompli.

I’d be lying if I said it was easy to stay both vigilant and upbeat at all time. Meditating helps. Love is the engine of change and survival, but it’s still tough.

The tests will not only determine when I can toss my mask, eat a salad (or vice versa) or go to a concert or get on a plane. They might reveal my future.

Then again, I was never promised clarity. I was only promised risks.

I wish I could have laid out for you a painted scene with wider vistas and deeper perspectives, but there will be time for that in the future. For now, my friend, I must entangle you in the details of the process.

A quick Koffman family update: Patty is playing drums in our living room; Rachael is designing low cost housing in San Francisco; Nick is hoping to circle the globe developing plans to recycle obsolete American military bases; Heather has just started her Manhattan law practice; Ben is filming a JBL/Caltech movie about radio telescopy and another about the punk scene in Santa Ana, and Will is studying art in Florence, Italy.

Be well. Stay in touch. Drop by if you venture to SoCal.

 

Brian Koffman