I swore I was going to write more regularly, and I haven't done this. Not to make excuses, but I honestly haven't felt well enough.
Earlier this year, I had a bad reaction to the carboplatin. The Taxol caused severe neuropathies in my fingers and feet, which have improved only a little bit. I still have difficulties fastening buttons, the dogs leashes, etc. The problems with Taxol led them to change me to an oral medication called Xeloda. This regimen was 4 big pills twice a day with food.
The Xeloda has its own set of special side effects: severe fatigue, diarrhea and nausea,for starters. Most fun has been "hand-foot" symdrome, which has caused fissures in my fingertips, rash and itchy skin, much worse than the Tarceva alone(lung CA med). So between the nerve damage which has left hands and feet numb to the middle foot/haned, and the deeply cracked, dry skin, I can no longer play the harp.
Not being able to play the harp is the worst loss of all. I started playing harp when I was 9, so being a harpist is a part of who I am. I have lost the cathartic, healing effect of sitting down to play. There are a number of songs I have written that I will not have a chance to record. I have been grieving this loss hard.
Another disappointment: after living with the side effects of the Xeloda for 3 months, recents tests show that it hasn't helped. My recent PET scan showed progression in my liver and bones, along with 2 NEW lesions in my pancreas. Also a big concern: I have been having a hard time speeaking. At first I just blamed the chemo, but now suspect brain mets. If that is the case, my time left will be greatly reduced.
So, I'm having a brain MRI Monday, and I see Dr S on Tuesday. Meds will be changed to aromasin and evorolimus (sp?)...and we'll see what comes next. If my brain is clear, we remain on course for just controlling the cancer as much ass possible. With brain ets, the choices are usuallly 1.) do nothing. Life exepectation ca 4-6 weeks, 2.)high dose steroids, buys ca. 3 months, 3.) radiation, buys about 6 months. I'm not sure I want to think about 3 months on high-dose steroids. Don't think that those are memories I want to leave David--I'm nutty enough.
To add to the distress of the last weeks, I lost a friend to metastatic breast cancer about 2 weeks ago. She had lung mets, then brain mets. When the brain mets showed up, she decided not to pursue any further treaatment. She lived about a month after the brain mets were diagnosed. Another friend has taken a turn for the worse, and is entering hospice care today. He has recurrent metastatic lung cancer.
So, in spite of all grieving and sad stuff, I keep trusting the Lord for a plan much bigger than any of us could have. I repeat that I have seen so much good come out of my cancer, especially in terms of realtionships of people around me. None of us are promised tomorrow, and that means living ~~really living~~ each moment. People and relationships take priority over work and hobbies.
So, now that we're up to date on the health stuff, I'll work on some other things next post. I need to tell you all about Bee and other stories about how the Lord has been working. There's a wonderful story about a friend with a beautiful heart and BLT sandwiches. I can't complain.... we are so blessd.
