Friday, September 12, 2008

"Cause it's the little things, oh, that mean a lot. It's what you are, not what you got" Sonny and Cher

Wild thing, I think you move me
But I wanna know for sure

The Troggs

4 days ago, I promised full disclosure so no later plot twist takes the luster off my great news: no CLL in my bone marrow. 

But even this gonzo reporter can't spray his words at an evanescent target.  I want to scream: Drop your weapons and come out with your hands over your head. And cough up the answers.  Is the engraftment taking? Should we speed it along? If not, why not? Am I threatening to reject this gift of a new chance because of my lack of chemo before? 

The more chemo pre-transplant, the lower the risk of graft failure. Prior chemo wallops the immune system so the body's ability to fight off anything such as an unrelated donor graft, an invasion by bacteria or virus, or a return of cancer is diminished. I had no chemo, nada, so my most unusual path to transplant puts me at an unusually high risk. And another push down that slippery slope is that my blood levels of the immunosuppressive anti-rejection medications have been at the low end of normal. So just increase the meds or add new ones, stupid and move on to happier days.
Not so fast! 

If my T cells, those generals of my immune army, are mostly donor, and they are. maybe they need the safety off their biological weapons of mass destruction, so they can wipe out those nagging old blood cells from the old me. That usually means reducing or stopping the immunosuppressive drugs.

Tricky eh? If I were my own doctor (and no snide comments please) I would do nothing until it was clear what to do: PRIMUM NON NOCERE ( Above all, Do no harm)

So how do we dig and get the answer? We need good intelligence. How do we get it? Is there a test or procedure that might help shine a light? I am still waiting to see if there are clues from the details of my last bone marrow biopsy and engraftment study.

We have taken over the enemy's capitol fortress.  No cancer to be seen. As the prez said: "Mission accomplished." Now begins the real task of holding it and rebuilding a blood system from the bottom up that is not infested with hidden terrorists waiting for a chance to emerge from the darkness when our attention is elsewhere.

I feel in my heart I have won a complete and unconditional victory, "but I wanna know for sure."


Blogger Wendy S. Harpham, MD said...

Think about what wanting to know what you can't possibly know with current technology does to your current quality of life. Does it help you in any way, guiding you or prompting you to take positive action you might not have taken otherwise? Does it hurt you in any way,distracting you from embracing life or prompting you to take negative action you might have taken otherwise?

I'm guessing you were taught the same aphorism in med school that I heard: At times, the best course of action is to hurry up and do nothing.

Maybe this article will shed some light on dealing with uncertainty (and further explain why I, as an 18 yr lymphoma survivor, no longer think at all about cure):
"A Certain Uncertainty" can be found at

With hope, Wendy

September 13, 2008 at 9:33 AM  
Blogger Ronni Gordon said...

Sounds like you're doing great. I read in some book that when we start looking back and saying, "if only..." or when we look ahead and ask "what if..." that we should get a grip and say the only answer there really is: "I don't know." The other ways are not productive. (Easier said than done!) Have you checked out the Leukemia and Lymphoma Society discussion boards? There are a lot of people on there providing support for similar issues. Go to the website and look to the left in the list of options, then click on discussion boards. I've been visiting the group called bone marrow transplant, but there is also one on living with uncertainty. You can read it all but if you want to start your own thread or post a comment, you need to register. (It's free.)

September 13, 2008 at 5:23 PM  

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