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!
I've commented a couple of times but it disappears so will try again. My prayers are for the best possible outcome for you. This weather certainly adds to the pain for me but I'm sure it's more than that for you. God bless and keep. Bonnie
ReplyDeleteThat is one of our favorite movies too. Thanks for keeping us updated. You're continuously in our thoughts and prayers! Hope it goes well next week.
ReplyDeleteEsther
Wow. Strict criteria. If only the heart and soul and beauty of a person dictated the move to the stem cell arm of the trial... you would surely have it all behind you already! Take care Holly. We think of you always. Mary and family
ReplyDeletePs.... By the way, when I pulled up the blog and saw the Princess Bride picture you posted, I thought it was a wedding picture of you and your husband... :). Really. I thought your husband's choice of shirts was a bit odd for a wedding picture... but....
ReplyDeleteMary--love the comments... but it worries me that you were more concerned about a shirt at the wedding than a huge crown??
ReplyDeleteLove you!
Holly
I'm so sorry to hear that your pain is still so bad. Are you allowed to take any pain medications? If so, have you found anything that helps without too many negative side effects?
ReplyDeleteThank you for helping John so much with his health concerns - you are a great wife, mother, daughter-in-law and sister-in-law.
Good luck in Chicago. Please keep hanging in there with your indomitable spirit until something good happens. You have a lot of people praying for you and wishing you well.
Love and hugs,
Elaine
Holly, you are right. The crown should have been a huge concern. I didn't notice it! Not a good sign. Selective judgmentalism... there must be a good medical term for that ailment??
ReplyDelete