Some Good Points, Some Bad Points

I feel like every time I write a blog entry I have to apologize for not writing sooner.  To tell the truth, this last treatment kicked my ass again, and I didn't really feel much like writing.  I was hoping that the new regimen of anti-nausea meds would help, but it really didn't.  The effects seem to be cumulative.  I spent another 4 days (day 3-6) on the couch, wanting the world to end.  It really was a bad combination of nausea, fatigue, pain, soreness, fogginess, and hopelessness.

But that's all over.  I've been feeling quite good for the last few days.  I went to see Phish this past weekend at Bethel (the site of the original Woodstock festival).  We stayed in a bunk house with some friends at a summer camp about 20 miles away.  The organizers provided buses to the concert location each day.  There was a pool, a mess hall, showers (yay!) and live music during the day and late at night.  It was like hippie summer camp.  We had such a great time!  I got lots of knitting done, kept the drinking to an extreme minimum, and I had a blast.

When I have such a good time, I can almost forget how crappy I feel on the Cisplatin.  Almost.  I recently realized that the next Phish festival falls on a "bad weekend."  I was pretty devastated when I discovered this.  I enjoy seeing Phish so much.  It's such a joyful experience for me.  It makes me happy, it rejuvenates me, and it soothes my soul.  How could I miss another 3 days of awesomeness in exchange for this awful treatment?  Phish makes me happy to be alive.  Cisplatin makes me wish I wasn't.  I made up my mind that I wanted to talk to my oncologist about potentially delaying one of my treatments so that the 4th of July Phish festival could be on a good weekend and I could enjoy myself.

I also had a scan yesterday.  I got all hopped up on steroids, and I didn't experience any kind of allergic reaction (phew).  My doctor called today with the results.  There's no way to sugar-coat it.  Unfortunately, the disease has progressed again.

Ugh.

I was hoping for some relief from this brutal treatment and I actually got it, though not in the way I was expecting.  Since the tumor has now been growing for at least 3 months, I need to switch to a new drug.  I'll be starting on Xeloda (capecitabine) soon.  I was supposed to meet with my doctor next Thursday to begin the next round of Cisplatin.  We're going to keep that appointment and I should start on the Xeloda shortly as long as my blood counts are okay.

My oncologist at Dana Farber offered to let me take this drug with my local oncologist, but I'd rather not bounce around between doctors.  I think she was relieved to hear this, and I was happy to say it.  She agreed that it would make it easier for her to treat me and to offer new trials, and that's exactly what I want.  It's a pain to drive to Boston, but I really want to have all options available to me.  Some people drive much further.  I really have it pretty easy.

I've been trying to research Xeloda.  So far, it looks like the most common side effects are nausea, diarrhea (oh joy), and hand and foot syndrome.  I think the nausea and diarrhea are mostly mild, but the hand and foot syndrome is a little disconcerting.  Apparently the hands and feet get dry and blistery.  Most people have said that if you proactively moisturize with special creams, it's not so bad.  I just hope that it doesn't affect my knitting.  If it does, I'm going to need a new hobby!

While I'm obviously upset that my tumor hasn't gotten under control, I am going to look for the good in this.  I absolutely could not handle the last treatment, and now I don't have to.  This really changes the face of my summer, and I'm hoping it's for the better.  I'm going to stay positive and believe that I'm going to have a few days of side effects, and a lot of days of feeling good.  Some people say this is the easiest chemo they've ever taken.  I would like to start being an overachiever again, so let's hope I have that kind of experience.  As always, I will keep you posted.