If I Knew Now What I Knew Then

Well, turns out there is no difference in what I know now and what I knew "then" (the beginning of this trial)!

I really had been hoping to get some concrete information to see if this drug is working. I guess my experience with medicine until recently has been the "instant gratification" sort - if you have a headache, take some aspirin and it's gone in half an hour. An infection? Take an antibiotic for a few days and say bye-bye bug! This, however, is a whole new ball game. I've been taking the Gleevec for 3 months so I figure there should be some evidence of some sort of result, right?

There are a couple of factors at work here. One, it would be nice for my own piece of mind to know that the unpleasant side effects and such are a small price to pay for getting well. Two, if the medicine is working, then it's just a matter of managing these side effects (I know, it's no small matter, but hopefully do-able) for me to consider returning to work. So, I've worked myself up into quite a state over the notion of results.

Ah, but it's not that simple, is it? On my UCLA visit two weeks ago, Dr. K did another skin measure and essentially there is no change. Yesterday I went in for a vitals check and lung function test to check my lung capacity. I had the test initially when I was diagnosed here in Torrance and it's to be done every 3 months - from now on at UCLA. My capacity did decrease 6% points from last time, but as Tina cautioned me - there could be some variance between the two labs so let's consider these latest results as the new "baseline." She also pointed out that I've only been taking the maximum dose of Gleevec for a short time so I really shouldn't expect to see anything concrete for another 2-3 months. Oh....ok..... Can you say - "knock the wind out of my sails?"

So what else is going on???

PT is going well. We did another assessment this week and I showed small improvement in flexibility but significant improvement in strength! Must be all those hand exercises - my hands are getting ripped! Grunt! Grrrr!! Other Obnoxious Weight Lifter Noises!!!

Still having issues with, ah, the "lower GI tract." Dr. said others in the clinical trial are having these problems as well so they need to see if it's Gleevec-related or scleroderma-related. I'm off the meds for a week to see. Off the meds? Well, that doesn't really help with my quest for results, does it?

I've also had a lot of shortness of breath, especially at night. Dr. said it could be the reduced lung capacity or that it could be related to the GI issues! Huh? Evidently, lying down can allow the contents of the gut to impede the lungs - ewwwwww!!! He recommends an incline pillow to raise the torso at night. What's next - the Craftmatic Adjustable Bed? More importantly - when did I become an old person?

"A Hopeful Time"

Bob Saget (yes, that Bob Saget) recently appeared on the Today Show to promote a Scleroderma gala - great info and humor. For those who don't know, Bob's sister passed away from the disease and he is active in raising awareness. Please click the link below to watch.
http://video.msn.com/video.aspx/?mkt=en-US&brand=msnbc&vid=deef6646-3573-4ef7-b0fa-41ed5b1b967c&wa=wsignin1.0

Like a Torture Sandwich

So someone asked me how physical therapy was going recently. I've decided that PT has a very Dickens-ian aspect to it. You know - the whole "best of times, worst of times" thing. The beginning is wonderful - a nice hot paraffin wax dip that feels so amazing on my constantly-aching hands. The ending, too, is fabulous - a relaxing hand massage by a super-trained pro.

Now, if it weren't for the middle portion, I would advise anyone and everyone to contract whatever disease/ailment is necessary to have a PT referral. Don't get me wrong - Sarah, my physical therapist/part time dominatrix (I'm guessing) is very nice. I suppose that's important when your occupation involves bending people in directions they really don't want to go: "Ok, I'm just going to dislocate your fingers now - how is your husband doing?"

Her office truly resembles a medieval torture chamber. Or maybe a Pilates studio - not much difference, if you ask me. There are pulleys and levers and various contraptions that are actually motivating me to diligently do my exercises at home - "No way is she hooking me up to that thing!"

The whole campaign of keeping my hands from contracting under has turned out to be fairly consuming. I visit Sarah twice a week for an hour, then I do exercises (that's right - hand exercises) 3 times a day. Every time I complete a set of exercises, I wear my splint for about an hour. Is there light at the end of this? It appears so - last week we did a progress assessment and I am showing improvement!

Ah, improvement. I am getting a bit edgy with taking the Gleevec. I'm almost to the max dosage and I'd like to find out if it's, you know, working. I'm just getting over yet another respiratory infection and am looking forward to perhaps a few days of feeling good. My next appointment is Thursday and I believe they will be doing skin scores and such to check my progress. I can say that the skin thickening has definitely worsened on my face. And, of all the places to have something like 'skin thickening,' the face isn't really ideal is it? Hopefully there will be some answers after Thursday!