Sunday, October 21, 2012


Since my insurance company wouldn't pay for Lyrica, my doctor prescribed something call garapentin which is used primarily for epilepsy. I no longer itch! But the drug has side effects. I'm completely loopy when I take it, so I don't dare drive or use machinery. It makes me concentrate more so I can actually do things. Of course, I'm on a mega dose of prednisone so they probably counteract each other.

The cataract in my left eye, which I'm having removed on Halloween, has really affected my vision. Even with the PROSE lens I can't see much, another reason not to drive. Seeing through one eye works okay, but adds to my sense that I'm in a semi-hallucinatory state. If you saw me walking down the street, you would swear I was drunk. 

Wednesday, October 17, 2012

Upping the Pred

I saw my oncologist yesterday and told him how awful I feel physically and mentally. He was very sympathetic and agreed we needed to do something. The something is a high dose of prednisone (60 mg) for 4 days and then a gradual taper back down to 20. I took 60 yesterday and I'm in hyperdrive. I will also see a therapist.

You can tell right away when I have excess energy. I switch my shoes according to the season. I organize my lingerie/socks/scarves drawer and throw out things that add to my sense of disorder. I can barely tolerate disorder in my natural state. On predinisone, I'm an unstable nuclear device.

My plans for the day, other than achieving world peace, include another Vidaza shot, yoga, perhaps a massage and a trip to the pharmacy to pick up all my drugs. I plan to make turkey thigh curry tonight. Last night I crashed and burned before I had a chance to make it. Marty took pity on me and made Trader Joe's hot dogs and a salad.

The Yankee game and the debate faded fast. It's just as well.

Monday, October 15, 2012

Vidaza Shot No. 1

My first 5-day round of Vidaza shots began today. It was a walk in the park. The plan is to do this regimen for 3 months: 5 daily shots, 30 days rest, repeat.

I worried about the usual suspects: injection pain, nausea, swelling at the sight. Am I using too many colons? So far, I've been fine. I ate lunch and went to yoga.

On the foot front, I consulted my son. He's an elite runner who's had a number of injuries, minor and major. He asked me what I'd been doing prior to the pain in my left foot (only when I walk), which was nothing except walking on an uneven beach. He told me to ice the area for 15 minutes several times a day and take ibuprofen. The pain is gone!

I'll mention this to my oncologist tomorrow during my appointment. He'll probably recommend an x-ray just to be safe. I'm more concerned with my extreme skin gvh and water retention. Today is the first day in a long time I haven't been sad.

Saturday, October 13, 2012

Envelopes Are Made to Be Pushed

My recent lethargy seems to be lifting, and it's not due to drugs. I'm still waiting for the Lyrica to be approved.

Yesterday, I hung around the apartment trying to make my desk recognizable as a desk. Then I took the subway downtown to meet my friend Jim for lunch. He took me to a fancy-shmancy restaurant and we had a mahvelous meal. Buoyed by my clam chowder, chicken caesar salad and a cool, crisp Sancerre, I made a bold decision. I walked a block to Century 21.

Century 21 is a discount department store crammed with merchandise and people. Tourists flock there. I once saw a German man drop $7000 cash on a suit and some shirts and ties. Only the strong survive this store, where getting jabbed with elbows is expected. I went in to look for a birthday gift for my son and some items requested by my daughter.

On the mens clothing front, I was very successful. Even with my coat off, the sweat was pouring down my face. I didn't find anything for my daughter so I went home, only I didn't go straight home. The express train was waiting for me at Fulton Street so I took it to 86th where there is an H&M clothing store. This is another toxic shopping venue, but I would not be thwarted.

After finding exactly what I was looking for, I stood on line sweating for 20 minutes to purchase my bargains. Then I rushed home (not easy with my bum left foot (another story) to wake Marty and drive up to Poughkeepsie to take my son out for dinner. I didn't even nap in the car!

I had a martini, something not approved by my medical staff. Harry is my baby and he just turned 20. The cold crisp cocktail made me feel great, something my buckets of pills do not.

This morning, we rose early and drove to Waterford, CT to see Harry compete in a 8k cross country race. It was a beautiful day, and Harry PR'd and was happy. We had lunch al fresco at Captain Scott's which is a lobster shack in the marina in New London. As per my friend Jim's recommendation, I had a lobster roll, made without mayo (yuck), just butter and lemon.

We flew back to NYC but I was unconscious for most of it. I needed that nap. In 45 minutes we have to be in midtown to meet people for dinner.

Friday, October 12, 2012

Bumps, Flakes, Scales and Other Disfigurements

I could stand it no longer. I went to see my dermatologist to show him the flare-up of my skin gvh. He agreed it was nasty and that he would discuss it right away with my oncologist. In the meantime, he gave two prescriptions, one for a spray called Clobex and one for Lyrica, a pill. Lyrica is advertised on TV. The side effects are daunting, but they have to reveal everything for liability reasons. I guess I'll give it a whirl.

I've developed a couple of patches on my face, which has remained clear until now. If it spreads on my face and if I gain any more weight, I'll go on a yoga retreat somewhere. Who knows? Maybe a good toxic draining and some spiritual rehab would cure me.

Wednesday, October 10, 2012

Fortune Cookie Truth

We went out for Chinese food yesterday with our nephew Mark who lives in Maryland. This was what my fortune cookie said:

"You could prosper in the field of medical research."

It got me thinking. Maybe I could pre-donate my body to science, collect the money now, knowing I would be gleaned for side effects relating to leukemia and graft versus host disease when I die. If they wanted to, they could take non-essential bits right now: skin scrapings, organ biopsies, scans, and the like. Heck, they may have developed the technology for a Fantastic Voyage exploration using tiny robots.

I doubt this would be legal or considered ethical. Why shouldn't I make money from my misery? Perhaps pay off medical debt? I'd be less a drag on my fellow Americans who're now paying me disability each month.

Vote for me.

Friday, October 5, 2012

On Vacation

I'm on vacation from my life. Five women and I are in a villa on Sea Island in Georgia. One of the women is in a program like a time share, so this costs us nothing. The connection among us is that we all lived in Costa Rica at some point. It's the gift that keeps on giving.

Skeet shooting, biking, kayaking and yoga are the activities of choice we've pursued so far. We've been making good food. There's no one to care for but ourselves. That's living.

My health issues have come with me, but I haven't been down in the dumps. I itch like crazy, and the water retention has reached epic levels. Even my eyes have been driving me nuts, despite getting a new PROSE lens. Debris is already settling on it, so I only get a few hours of clarity.

I've been sleeping well, sharing a bedroom with my old traveling buddy Judy. In our younger days, in Guatemala and Cuba, we didn't snore. Now we do. A little. It's been great sharing stories about our Costa Rica days and catching up on current life. I don't often speak about my Leukemia history, but these women have been asking me a lot of questions and I've convinced them to sign up to register to become donors.

The link always bears repeating: