Saturday, April 23, 2016

Mistakes were made

I made a mistake by getting the photodymanic therapy Thursday so close to Passover and the seder I'm having today, but by the time I realized it and went to reschedule I discovered I would have to wait until fall. With precancerous spots in various areas of my face and neck and a recently removed squamous cell, I decided I better do it.

To do this procedure, the doctor applies a photosensitive chemical to your neck and face, and then you get wrapped in Saran wrap and a layer of foil and hang out for an hour. Then you get an intense blue light for 16 minutes. It feels like the worst sunburn you can imagine. The last few times I got one blower to hold in my hand. This time I got one for each hand. You wave them around while you are frying. The benefit is that you get a fresh layer of skin.

 It occurred to me that I could have brought headphones and listened to music but it was too late. So I just focused on my breathing. Some doctors came in to observe the procedure. Dr. Lin told them that I had a bone marrow transplant and that I play tennis. Tell them I had four, I said from under the machine. They were impressed. One asked who my favorite player was and I had to search my memory because I was distracted by the scorching light. I came up with Federer. The doctor said he likes Nadal, and I said I like him too, and then they disappeared and I was left on my own.

Afterwards, Dr. Lin asked me how it compared to the other times I had it. I said it was a little worse. She said that is because she added more of the chemical. Somewhere in the small print it says not to do it before a special occasion. My face is swollen, red, and painful as though I fell asleep in the sun. Yesterday I was achy as though I had the flu. A friend volunteered to finish my Passover shopping, but it isn't the kind of thing you can ask someone to do. I needed to pick my flowers and wine. So I went to Whole Foods, which was even more crowded than usual. I saw someone I knew and looked the other way.

It was pity party day, which comes with a layer of guilt because I know two people who are dying and one who just lost her husband. It is bad that I got what I got, but good that all these treatments exist. The stuff on my skin is partially my fault – due to the sun-worshipping, lifeguarding, and tennis – but it wouldn't be so bad if I wasn't on prednisone and hadn't had my immune system manipulated the way it has been.

To conclude on a better note, I had the best ride in on Wednesday for my ECP. My driver was a big black guy who had played football at Arizona State but had to take time off to come back to Springfield to take care of his parents. He is also a poet. When we started chatting I found out that I am not the only one who has had terrible rides. He said most of the passengers have experienced the same thing or worse.

He told me he had submitted a poem to the New York Times but got rejected. I suggested he go to the library or a bookstore and read poetry journals, then find a couple where he thinks his style would fit in, then read submission guidelines and send in some poems. From the back seat I looked up poetry journals and sent him a link to about 100 or so. We followed each other on Twitter, where I thanked him for the nice ride. He thanked me for the info. I said he could contact me if he needed any help writing his queries.

As previously said, I decided to pre-medicate before my ECP on Wednesday. When I got to my bed I saw that I had Frank, who is the most experienced at putting in the needle. I told him that if I had known it was him, I wouldn't have wasted the oxycodone. Also, he is so funny, making a pun a minute, that you are cracking up instead of crying. When I told him that I had taken the oxycodone, he asked if I was getting a buzz. I said yes. Then he went to YouTube on his phone and played Jefferson Airplane. It was a quiet day there, and a couple of the nurses started dancing. I'm afraid that due to the effects of the oxycodone I talked the ear off of the woman in the bed next to me. She also had a bone marrow transplant for AML. A couple of nurses sat and talked to me, and before I knew it, I was done. It's a good thing that I took it, though, because near the end my arm started to hurt.

Then I got a ride to Margaret and Nick's, where I had dinner and spent the night. The next day I got another ride to Brigham and Women's, where I got my face fried, and then another ride home. Almost immediately I turned around and went to get Maddie at Jim and Jane's. It was beef stew night, and they had a place set for me.