Wednesday, June 27, 2012

Nora Ephron Dies of AML-Related Causes

Every time someone famous dies of leukemia, it always takes me by the throat. I didn't read Ephron so much as know her name and the movies she directed. I didn't read I Feel Bad About My Neck, but I asked my dermatologist yesterday why my upper chest was so saggy baggy. He looked and me and said something about water retention. Sigh.

One unsightly body issue I've tried to assiduously avoid since I was 30 are saggy upper arms. Now it doesn't matter because my arms are huge and filled with fluid. Sigh.

 It's not that I feel worse about famous people dying of AML. It just reminds me of people I know who died and how I was in line to be another victim.

Monday, June 25, 2012

Sliced Again

On the way to yoga today I got a little misty. I'd been to my dermatologist for my 3-month check-up and he noticed a tiny suspicious spot on my lower left leg just above the ankle. He called it a mole; I saw it as a freckle. I have lots of those. He wanted to biopsy it. What could I say? He said no news is good news.

I've always understood that expression in two ways: No news is good news and No news is good news. To me, news is very rarely good or needed at all. It's usually just worthless information, or it's bad. Maybe 5% is truly good news. I'm an optimistic person who doesn't like "news" all that much.

The nurse today said a curious thing. After she asked me about all the diseases I might have to which I said "no," she smiled and said that I'm lucky to be such a healthy person. I'm lucky to be alive, but I'm not a healthy person. All you have to do is look at my pill organizer to know that.

I willed myself out of my funk and had a great yoga class. I managed to keep myself in the present moment and not dwell on the past or future. I wish I could live that way more often.

Tuesday, June 19, 2012

It's Nice to Agree with Your Doctor

I had a 7:30 appointment with Dr. Giralt today. My blood counts are good, and even my liver enzymes are on a downward trend. He's not really a numbers guy though. He asked me how I was feeling compared to our last visit 6 weeks ago. I general, I feel pretty good, but I do have some issues that bother me. Water retention is probably the worst. I tipped the scale at 140 this morning. If I had to guess, I think I weigh around 130, maybe less. Then I mentioned mouth tenderness, bone pain and increased itchiness on parts of my body that never itched before, phantom zones where the skin looks perfectly fine but feels like it's being gnawed on by red ants.

We have 3 choices, the doc said. Do nothing, reduce the Gleevec by half, or stop taking it. As much as I'd like to stp taking it, I knew he was for reducing it. I'll take one every other day and see him in 4 weeks.

I was home by 8:15.

Wednesday, June 6, 2012

Rule of the Bone

Gleevec has been a miracle drug for people with CML. CML is a slow-moving leukemia, as opposed to AML, which is what I had. My doctor put me on Gleevec to see if it would help with my chronic skin and liver issues, something my donor gives me in exchange for keeping my blood cancer-free.

I started Gleevec in early April. Five hours after taking the first dose, I woke up with extreme bone pain in my pelvis and legs. 1000 mg of Tylenol helped, but I didn't sleep much. This pain comes and goes in different bones of my lower body. I can manage it, usually.

Water retention has been nasty. I take 40 mg. of Lasix every other day. At this point, it barely makes a dent. My hands are puffy; my arms thick and hard. I weigh myself every day. Today I was just under 140 lbs. My "normal" weight is around 130.

My gums have been tender and I've had a few mild mouth sores, which means Gleevec is suppressing my immune system. 

I hope the drug is helping my liver enzymes. Since Saturday, I've had extreme bone pain in my right leg. I thought it was shin splints because I'd walked a lot all day in improper shoes. But it was only the one leg, and only hurt when I walked. Yesterday it was so painful (8 on a scale of 1-10), that I broke down and took 5 mg of Oxycodone. That was after the icing and 1000 mg of Tylenol failed to put a dent in the pain.

In 20 minutes the pain was gone. I could cook and walk the dog and get from one room to the next without wincing. But I can't live this way.I don't dare go jogging. I can probably take a yoga class.

We'll see what my doctor thinks in 2 weeks. I will have been on  Gleevec for 11 weeks. These side effects are a lot to pay if there's no improvement in my liver numbers. My skin is as bad as it was, even more itchy.