Frustrations and mis-steps

Dear Family and Friends,

We caused ourselves some unnecessary grief by assuming (remember the old mantra: "Assume and make an Ass out of you and me"? Well that was us. After planning a two-day trip to NYC, we decided that since our first stop practically, was Mt. Sinai, we didn't have to bring the CEP-701 pills—because after all they have the pills there. It's a bit of a fuss carrying them around because they have to be kept chilled, so chill packs and containers are needed—more to carry. Well, that was entirely the wrong idea: this is a study, and so the pills are given out for certain sets of days. Dr. M., after much going back and forth and running around by staff members to see if they could find enough pills (14) for that night and the next morning, we had to make a choice: skip the pills for that night and the next morning (with a bad effect on the study) or return to Glen Head. We chose the latter. We didn't want to mess up the trial by skipping 2 doses.

Dr. Mascarenhas gave me a thorough exam; he believes that the spleen is no longer palpable. He has thought that for a few weeks, even before CEP-701, but was more certain yesterday. That's a good thing. The round belly is probably related to prednisone. He is very very pleased with my bloods; it means that CEP-701 is working. The WBC, though still enormously high, is better, and the platelets are really good, over 350, almost normal. The only bad effect, possibly from CEP-701, is a rash on my face. I had started a new sun block on my face, so I will discontinue that and hope the rash goes away. Itching continues to be a problem, but Dr. M. wants me to taper down on the UVB light treatments, which I do for the itching problem. CEP-701 should prevent itching. Hasn't yet, though.

On the way to the bus going to Mr. Sinai I bought a pair of earrings from the street vendor next door on 40th St, and a pair of shoes on sale on Madison Avenue. Multitasking. I like shopping that takes minutes.

By the time we finished at Mr. Sinai, it was well after 5, and we wanted to get to Jay's book party. We took the subway to Chelsea and got there in time to say hello, grab some food, meet Hannah and a few others (Barbara, Meta, Mimi) and rush out, just making the 7:11 train to Glen Head. We did not arrive home until almost 9 p.m., at which point I counted pills, took 7 after eating an ice-cream pop (I've got to eat with pills!) and emailed Dr. M, as he had requested, apologizing for the tumult we had caused by leaving our pills in Glen Head, and telling him, as he had requested, how many pills I still have. He was very sweet in his response. We'll get more pills when we return next week. We know now that we have to allow lots of time there. Appointments, because of one thing and another, take hours.

I admire one good thing about their procedures there. No undressing and putting on skimpy paper gowns. You remain in your own clothes, obviously keeping them on the loose side, during EKG and all other monitoring. It would save time and money if everyone used hospital gowns minimally: time, money, embarrassment. It would especially be hard to wear a gown when the whole thing takes a few hours.

Everyone is very nice there, I should say. We are learning to recognize the various people we deal with.

Now we are off to the City again to finish our plans for these two days. I'll write tomorrow to report on the events. MoMA is in our plans, but I'll be in a wheel chair. After all the activity yesterday, my pelvis is sore. I will try to take it easy today.

Love to all,
Bernice