Two years with the light therapy already

First day at ECP, two years ago

The light therapy, the internal sunburn, the blood thing: These are some of the ways I have described the treatment I have been getting at Dana-Farber for the past two years.

It is technically called extracorporeal photopheresis, or ECP, for Graft vs. Host Disease of the skin. When last week Facebook sent a memory from April 28, 2015, I thought it was a good time to look at the then and the now.

It began with a nurse telling me, "We have to get them to stop acting like teenagers."

The post continued,

The "them" is my T cells, and my nurse today at the Kraft Blood Donor Center at Dana-Farber told me this in explaining why it will be my home away from home for two days out of each week for the next three months or longer.

My first visits yesterday and today went well. The only discomfort occurred when the needle didn't quite hit the spot (not fun) and when my arm hurt for the last 10 minutes or so when my white cells were returned to me after being collected during the three-hour process called ECP, or extracorporeal photopheresis.

My blood went through six cycles during which white blood cells (which contain T cells) were collected and then the rest of my blood returned to me. At the end, a bag of white cells is subjected to UV radiation, which changes their DNA so they will stop attacking my skin.

"They're getting a spanking," the nurse said.

The process works for all kinds of Graft vs. Host Disease, and hopefully it will also help my liver and enable me to get off prednisone. Two other people were getting it done at the same time, and several more were scheduled for the next round at 11, and more for 3, which is when I did it yesterday, followed by the 7 a.m. session today. It felt early but it was actually a good time because I slept through most of it.

Clearly I'm not the only one who drives a distance. One couple, for example, comes from New Jersey.

And I'm not alone in getting GVHD of the skin years after my transplant. The nurse said one woman developed it after 12 years.

I had brought my computer and was able to read a little of the New York Times. I have a book but I'm not sure how that will go because I can only use one hand. I'll try it next time leaning the book on a pillow. The nurse said most people use a tablet. I'm still a hold-out on that, though.

Afterwards, I made a beeline to the cafeteria, where they have Starbucks coffee. It's not a great idea to drink too much beforehand, because if you go to the bathroom they have to put a board on your arm to keep it straight.

I texted the photo of me in the bed to Ben, Joe and Katie.

Joe wrote, "Looks comfortable!" and Katie wrote,

"Back at hotel Boston!"

NOTE: Alas, it did not help me get off prednisone. I doubt that it will ever happen. It did soften the skin that was hardening and improve my flexibility to the point that I've gotten one of the best rewards: A compliment from our pro, George, who frequently asks what they're putting in my veins to enable me to get to more balls.

Still, at this point my progress can feel frustratingly slow. I'm keeping at it at least for a while in the hopes that the ripples on my thighs and abdomen (and the feeling that it has a band around it) will diminish somewhat before I stretch out the treatments into more maintenance therapy.

While Nora Ephron felt bad about her neck I have to admit I feel bad about my stomach.

After all I've been through, I should probably get over it.