Tuesday, May 18, 2010

Moderate encouragement

First of all, don't ever get in a car with Jerry and a GPS system. He takes every contradiction to the directions he had in mind as a personal affront and ends up swearing at the nice lady in the machine who clearly was taking his comments personally herself and said "Recalibrating" increasingly gruffly as we drove around and around Boston. But we got to Dana Farber, and finding it was really the most traumatic part of the day.

Here is what Drs. Hata and Wolpin basically said:
  • It is extremely unusual for someone to do so well so long on just Gemcitabine. Eventually the cancer gets used to the Gemcitabine and it no longer works; this is what has happened to me. So then it's time to move on.
  • Dr. Nickerson had recommended a form of chemotherapy called 5-FU. Dr. Wolpin strongly suggests a chemo cocktail of 5-FU, leucovorin and oxaliplatin, called FOLFOX. We'll explore these two options further with Dr. Nickerson day after tomorrow. There are side effects, and at least FOLFOX involves a 48-hour continuous delivery system, which means I'd wear a fanny pack containing the drugs and a pump. A tube would take the chemo up through my port. My first question, of course, was whether I could play trombone while wearing the equipment. I don't think anyone had ever asked them that before, because the answer came down to "do whatever you can, but don't do anything that involves repetitious motions while you're wearing it." I'm not thrilled at the thought of trying to carry on daily activities hooked up to the system, not just trying to play trombone, but also what about yoga? What about sleeping? I'm still trying to get used to new sleeping patterns to help the rotator cuff tendonitis. But obviously I'll do what I need to do.
  • Dr. Wolpin said that he had a few patients who do this well on Gemcitabine, and when it's necessary to change the medication, these are the patients who also seem to do better than usual with the new ones, which is another hopeful sign for my ability to tolerate and last longer with the 5-FU or FOLFOX (which Jerry keeps misunderstanding as "firefox", "foxwood", or "firewood"--don't even ask what 5FU brings to mind).
  • We asked about some of the other options, and the general impression that I got was that they're still being tested and might be a third option for later on, when either the new chemo stops working or the side effects get too bad.
  • He was polite about curcumin but snickered at the thought of celery juice (not that I'd try it after my cabbage juice experiment). He said to try whatever makes me feel better, which is what I've been doing anyhow.
  • Unfortunately, no one in the examining room seemed ready to wave a magic wand and make the whole situation go away.
We left with less dread than we had come in with. The bottom line is that we should savor each day and continue to live as healthy and happy a life as we can, no matter what gets thrown at us.

4 comments:

Anonymous said...

Your strength is inspiring.

Katie :o) said...

Good thing trombone isn't repetative! Don't know about you, but I hit the runs in Footlifter differently every single time :o) Love the Jerry vs. nice-lady-in-the-box story! So glad it sounds like mostly good news :o) I look forward to botching runs with you tonight! (At least I'll be botching them!)

Unknown said...

That all sounds promising, except for the side effects. Great!

Unknown said...

Boston is a challenging city for drivers and GPS units alike. I find the GPS voicce gets snippier with every 'recalculating'.
Wondering what the continuous delivery system means for knitting.
The last line of point six sounds like good advice.
Best to you, Evelyn