Thursday, November 18, 2010

Dana-Farber day

I had a 9-to-5 day today, spent driving to Dana-Farber, having my check-up there and talking to various people.

There was a lot of traffic. Each way, when I had been on the road only about 20 minutes, I was overcome with fatigue and had to pull over and sleep. This despite coffee both ways. I just sleep for about 15 minutes and then I'm good to go. I really don't know why this happens, but at least I caught myself in time to pull over before I got in any trouble.

There was a lot of construction around Dana-Farber, and I sat in traffic for at least another 15 minutes or so. I was afraid that I would miss my 11 a.m. appointment with Mary Lou Hackett, the social worker who I hadn't seen for months. Ambulance sirens were blaring, and people seemed to be leaning on their horns. It was enough to make your blood pressure rise.

I had less than a half hour with Mary Lou, but I always find it comforting to see her. We have been together since the beginning, and she always has a story to illustrate that whatever you are feeling is perfectly normal. She said that at this time of year she thinks often of my mother, whom she calls one of her favorite people. My mother died on Nov. 26, 2006. Naturally, I think of her too.

I got 12 vials of blood drawn around noon and didn't have to wait as long as usual for my appointment. (It was scheduled for 1, and I got in around 1:30.) Because I have been feeling so well, I was pretty confident that my hematocrit would be higher, and it was. After being abouy 26 at my last visit, it was 33.7, almost normal. (Normal is 34.8 to 43.6)

My white count was normal, 7.8 out of a range of 3.8-9.2, but my platelets were still pokey at 65 (normal is 155 to 410) after being in the 90s a couple of visits ago.

Dr. Alyea said this could be because signs point to an increase in my Graft vs. Host Disease. My liver enzymes are still elevated, and I have a higher number of eosiniphils, a type of white blood cell that rises above normal when inflammation is present.

Instead of increasing my prednisone a full dose, I am going to try alternating my current dose, 5 mg., with 10 mg. every other day. He said doing it this way usually heads off side effects. Let's hope.

We chatted briefly, and he asked me how I was feeling. I said I felt good and told him about my ace from last week. We often discuss tennis, and he was happy to hear my news. This is so much better than talking about serious problems.

My friend Dr. Francisco Marty, an infectious disease specialist who always made me smile even when I was sickest, was around in the clinic, and Dr. Alyea said he wanted to say hi to me. Dr. Marty, in addition to being a medical specialist, seems to have a lot of thoughts about hair. "You need a haircut," he told me when my hair grew in scraggly and I hadn't had it cut. He said it with a smile, so I wasn't offended. Today he said, "I like your hair." Bingo! He is also a talented photographer with his own website, on which he said he had recently posted some new close-ups of roses. I checked it out and they were beautiful.

When I met him in the hall just a few minutes after seeing Dr. Alyea, he said, "I heard you had an ace." I guess important news travels quickly.

I had wanted to get back on time for yoga, but it took me too long; I actually got back around 5:45, 15 minutes after the class had already started. I needed to do something. So I quickly changed into my running pants, long-sleeved T-shirt and sweatshirt, throwing my good clothes onto the bed.

It was dark but not too cold. I walked down to the Lower Lake, the one that is paved and well-lit, and started to walk. I didn't really mean to run, but I ended up jogging about a mile and walking another mile.

That reminded me of the old me, the one who, after a long day, often quickly changed and went for a run. It's not exactly the same kind of run, but it was a variety of normal, and it felt good.


donna said...

Oh Ronni, I'm so happy for you! Keep hitting all those aces!

Anonymous said...


You are also an Amazin!-just coined as i typed....Salut...

Whoa! thinking of you left me wordless! that is almost unheard-of!


Nelle said...

It's all good :)