I'm not a movie buff, but I have to say that there are some great movies out there. Steve and I seem to be drawn to comedies, especially when quoting flicks. "Looks good on you." "But does it go to 11?" It's pretty sad when Caddy Shack and Spinal Tap pass for culture, but heck... we're Californians!
Lately, I've been thinking about one of my favorite movies, The Princess Bride. When Humperdinck suggests a duel to the death, Westley declines. He describes a far worse fate... a duel "to the pain."
After my experiences of the past few weeks, I have a new appreciation for pain. Fortunately, my pain subsided significantly for several days since my last posting. It was a welcome relief. For the past week or so, I have once again experienced increasing pain in the mornings and evenings, but it has not been quite as dramatic as early February. Nonetheless, I have trouble with mundane tasks which didn't bother me even a month or two ago.
I will be heading back to Chicago next week for my 6 month reevaluation in the stem cell transplant trial. I have been assigned to the control arm, and received 8 months of high dose IV Cytoxan. I chose this trial because, unlike most trials, there is an opportunity to "cross over" to the experimental arm if my condition significantly worsens. I find myself in a bit of a spot. What I really want is to be well, and what I don't want is to be worse. But, given that I feel so much worse, I occasionally find myself wondering about and even wishing for the stem cell transplant.
My pain, my joints, and my other symptoms won't have any impact on the cross over. The study criteria are quite clear and quite strict. I would need to have a 25% worsening of my skin score or a persistent and further 10% decline in lung function. Skin score and lung function are good indicators of prognosis in scleroderma, while arthritis, tendonitis, bursitis--while inconvenient--do not impact my life expectancy. Because stem cell transplant carries a high risk, and a real (although modest) chance of death, only these life threatening complications will impact the researcher's decision on whether I stay on traditional therapy or move into the stem cell arm of the trial.
My local doctors are working to tweak my treatment to help my symptoms in the meantime. Wish us luck in the never ending battle for the prior authorization!