Thursday, October 30, 2008

Mostly Dead

Princess Bride is my favorite movie. In one scene, the man in black, aka Dread Pirate Roberts, is captured and thrown into the 'pit of despair'. Count Rugan, aka 'the six fingered man' and the Prince are conducting research on torture and have built a machine that can suck life out of your body. They start low and suck one year of life from the man in black, reducing him to a quivering, whimpering mess. But then in a fit of jealous rage, the Prince turns the machine to full power, killing the man in black, well, not quite, it leaves him 'mostly dead'.
Mostly dead is what happens to you after 5 days on 100 mg of Prednisone, followed by one day of 40 mg of Decadron (200 mg prednisone equivalent) followed by 3 days of 1000 mg of IV solumedrol (Prednisone equivalent to an "uberdose") I felt wonderful at the wedding and reception, though, as I was lifted by my daughter's beauty, exuberance and infectious smile. But once she an Corey were gone, so was my strength. I gave myself the last dose of solumedrol, at home, in the IV left in me by the nurse.
The next three days, I couldn't move. It required huge mental effort just to get out of a chair. Speaking was a chore, and eating was impossible since everything tasted horrific. Note to self: Avoid high dose steroids in the future.
But then, with a finger wiggle and a head giggle, life began to return. Now, lets inventory our assets.
This all began two weeks ago with a biopsy that showed moderate rejection, the following week it was worse. This concerned my doctors greatly because my anti-rejection drugs were supra therapeutic. Phone calls flew around the country to try to figure this out, meanwhile the only treatment option was to go 'medieval' on the steroids. The Revlimid was stopped on the chance it might be interfering. The jury is still out on that question.
But me, being me, I always expect things to improve and they have. The heart biopsy last week showed no evidence Amyloid deposits, and the heart biopsy this week shows marked improvement with the rejection now at a 1a. I will take a month off of chemotherapy to let my heart get better, and then, who knows? I am still on bolus Decadron weekly on the chance it may keep the amyloidosis at bay. My Kappa Light Chains (amyloid marker) remain low.
Many questions remain, however. Was it really the Revlimid that caused my strange rejection? Was it an occult infection, masked by steroids? Was it the economy or election season hysteria? I am sure my doctors must see me as two people since I am a paradox. But then, I have always been unique. But I don't worry; if not plan B, then plan C and eventually on to plan 401K.
In the end, I am always aware of the sincere support of so many on my behalf, this makes the bad days bearable and the good days glorious. I haven't written recently because, well, I was mostly dead, Miracle Max did offer me a cure, but it took a while to swallow, as the chocolate was still quite unpalatable. Today, chocolate tastes wonderful, and that says a mouthful.

Glad to be among the living.


If you haven't seen The Princess Bride, it is worth watching.


Wendy said...

Princess Bride=YEA!!!!
I miss having you closer (proximity) to discuss politics, etc... I always enjoy your take on things. Barbie, too. Such deep thinkers you guys are. I need more like you around.

Mindy said...

I'm sorry to laugh in the midst of your suffering, but you're funny! That in itself is the paradox! I can just imagine the meeting of the doctors spewing scientific ideas and theories and then saying, "Based on all this supposition, our treatment will be to go "medieval" on the steroids!" I wonder! Who knows, maybe you'll improve on Tuesday, but maybe you'll get worse. Let politics being your guide....NOT! Love, Mindy

Anonymous said...

I am glad your feeling better!! However I laughed at parts of your blog to hehe

I am feeling better as well. Had a two night stay in santa clara Kasier. Just got home Halloween night around 8.
They removed that fluid that kept building up around my heart and changed the cozaar to 50 and 50 instead of the whole 100mg at one time. Also stopped the lasix and said I was dry.
I seem to have better vision now and no more sleepy eye.
Going to a party tonight as a hooker hehe
I will share pic's later
Have a great weekend