Wednesday, February 24, 2010

"To the pain"

The Princess Bride Quiz, The Princess Bride Trivia
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!

"Hold it, hold it! What is this? Are you tryin' to trick me? Where's the sports? Is this a kissing book?"  TPB

Sunday, February 7, 2010

Progress and Pain

Both of my boys have birthdays in January, so it has been a very busy month!  Jake chose to have his party at a Laser Tag spot, and Luke chose to have his party at home.

For Luke's event, the kids participated in a photo scavenger hunt, wandering the neighborhood with cameras (and adult supervision) to try to find a number of unusual items on a long list.  :)  The photo here is one of my favorties.

Progress: the kids are another year older, and they're doing well.

Sadly, I was not able to walk along with the kids.  This week in particular, my pain has been quite brutal, especially in the afternoons and at night.  I am having trouble walking, navigating stairs, brushing my hair or teeth, opening my pill bottles, pushing buttons, and so on.  It's kept me from writing in my blog (although I have voice recognition software, just using the mouse has been trouble).  I feel particularly hypochondriacal when I see how much I can do between about 9 am and noon.  I am still able to exercise, type a bit, shower and wash my hair, and so forth without much difficulty.  My joints are stiff and sore in the mornings, but I feel like a cripple later in the day.

My doctors are on the case.  They plan to change my meds and I am going to try a new rub-in joint cream. I head to Chicago on March 2 for a review in the trial, and to see where I stand with respect to the lung and skin issues.  I had hoped to gain at least a couple of years of trouble-free existence after the Cytoxan infusions, but my optimism is fading in that respect.  Dr. Burt (who runs the Chicago trial) was kind enough to call me on Friday, however, and discuss my situation.  He is open to allowing me to take just about any immunosuppressant medication that my local doctors recommend, so that is a relief and my local rheumatologist is already seeking approval from the insurance company for a new injectable.

Progress:  Dr. Burt visited San Diego this week and gave the Grand Rounds lecture at Scripps Clinic.  I am told he was very well-received, and generated a great deal of enthusiasm for his work doing stem cell transplants in autoimmune diseases like MS and diabetes.  Let's hope we see equally good results in systemic scleroderma.

*This is my second post on the new blog, so be sure to check out January's news!  I just got everything up and running, though... sorry that you didn't get a chance to see it earlier.