Friday, August 29, 2008

"Come over to the window, my little darling, I'd like to try to read you palm" Leonard Cohen

Courage is the ability to 
cultivate a relationship
with the unknown:
to create a form of friendship
with what lies around
the corner over the horizon--
with those things that have 
not yet fully come into being.

David Whtye (with thanks to Miles)


But that ain't me, babe. The unknown can wait. I am nothing if I am not in your face proactive. Hey, remember I'm the guy who had an elective transplant. I don't plan to let anything "come into being" without a big nudge in what I think is its proper direction. Rather than "cultivate a relationship with the unknown" I plan to shine a blazing and sterilizing light to cleanse every accessible secret. Despite what Batman says, you can't fight darkness with darkness. I need to know as much as I can to fight this mendacious enemy. You can't change the cards you've been dealt, but if you are quick and sly, you can count the cards, and with that knowledge you can beat the house (assuming you don't get caught).

As I mentioned in my last post, my doctor suggested waiting a month or so to stage my disease with a bone marrow biopsy (BMB), CT scans and blood tests.  The master physician, Moses Maimonides asks and I echo: If not now, when? I don't want to wait. I DON'T WANT TO WAIT. Besides the fact I don't want to squander what little gumption I have on waiting to be relieved, or worse case, sorely disappointed, moving now increases my options. 

There are only two possible findings and a thousand possible responses. Either everything is going well, albeit slowly and my patience will continue to challenged for a few years. That is  the best possibility. The worst is the dreaded and relatively rare graft failure.  We would be catching it early if we looked now. There are many reasons for this potential challenge and they all demand different responses. If my old immune system is actively rejecting the graft, my anti-rejection meds need to be upped or changed. If my graft is having a rough time finding a home in my bone marrow, my doc might decide to reduce my meds or use some new options like PTH. Waiting increases the risk of the graft failure being a "fait accompli" (a done deal for the non-francophones), and a true graft failure is a most difficult path to navigate.

So with the advice of Chaya (of CLLtopics.org fame) and others I emailed Dr. Forman about my concerns and suggested we do a bone marrow biopsy (BMB) next week and he said "sure" within 30 minutes of my email. With the short week, it will be Thursday before I am drilled again, but that's still at least three weeks sooner than originally planned.

Doctors like having tests co-ordinated and timed just so. Treatment decisions are often made on the basis of disease staging, and it is hard to stage leukemia if the CT scan is in November, the BMB in September and the flow cytometry to check the blood for clonal disease is in October. Not a tidy picture, so I appreciate Dr. Forman's willingness to live with this messiness, but hey cancer, like life, is messy. Messy is better than too late. He may ask me to repeat the BMB in a month.  I would happily go through BMB weekly if it would help.

As you might imagine, the reading of the slides is critical. This is no pregnancy test, no thumbs up or down, but more like like trying "to read your palm". It's a very clinical getting under the hood and then an artful sussing out of my bloody essence, the actual marrow of my existence may hold within it the secret of my prognosis. The hematopathologists will use their magic stains and dyes to try to divine my future and direct my care. From the micro to the macro.

By all means lets take a peak. I have the rest of my life to "create a form of friendship with what lies around the corner". I am pretty much guaranteed of years that I will be learning about getting along just fine with the great unknown. No need to rush the mysteries or the mystic when there are still answers to be found by digging a bit deeper, even if it hurts. 

6 Comments:

Blogger Susan C said...

So glad that Dr. Forman is willing and able to do the BMB on Thursday. You make a compelling case for not waiting.

September 1, 2008 at 1:58 PM  
Anonymous sahuri nur said...

Great, i love this article.

Thank you

January 12, 2014 at 3:40 PM  
Anonymous Jual Minyak Kemiri Alami said...

May you be given strength to deal with all this.. We wish you the best..

December 1, 2014 at 9:34 PM  
Anonymous Suplemen peninggi Badan NHCP said...

nice info for me
glad for visit this blog

October 11, 2015 at 11:17 PM  
Anonymous obat hepatitis b said...

i think this is verry good post for me

December 28, 2015 at 11:12 PM  
Anonymous jual kolagit said...

who is dr forman? i never hear about that name

September 6, 2016 at 5:51 AM  

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