Wednesday, February 28, 2018

Time for a double helping of alphabet soup

Today I had ECP.

Tomorrow I have PDT.

Time for alphabet soup in Boston.

OK, so by now you might be familiar with ECP. It's extracorporeal photopheresis, the internal sunburn, the UVA light therapy treating my graft vs. host of the skin. The blood burn. The thing I do every other week when I complain or mercifully don't complain about the drivers.

I was relieved to get a nice, polite one today. Two weeks ago another driver was late and rude. I started to get worked up. But Katie, who is home in between engagements, said, "Everyone calm down."

She told me she would drive me, which she did, and I had no complaints.

I went earlier today, at 1 instead of 4, so I could go to a community potluck for the content marketing company, Skyword. I want to write for some of their clients.

Over at the Kraft Family Blood Donor Center at Dana-Farber, I'm getting used to doing two needles. It takes two hours instead of three or even four. Not that I dislike the company – the nurses have become my friends – but I could think of something better to do than lying still with a needle, or needles, in my outstretched, immobile, arms. I passed the time by watching an episode of The Crown.

Then I took an Uber to Diane and David's so I could change my clothes and leave my bag before heading out to the WeWork shared working space near South Station.

Because we had gotten into traffic, I didn't have that much time for a turnaround, so I ended up taking another Uber. I hope I get some content writing so I can make up for those costs. It was a fun event in which I talked to some interesting people and went to a workshop on how to boost your freelance writing business.

It's a good thing I was wearing long sleeves: I had a bandage wrapped around each arm underneath my elbow, where the needle went. Pink with purple hearts. A good combination.

Determined not to take any more Ubers, I walked across the street from the cool WeWork co-working office space to South Station. Treated myself to a kids' size Pinkberry and thought about how nice the train station looked compared to when I moved to Boston eons ago and was mugged on a dark commuter rail platform...and called my father crying.

Tomorrow I have PDT, the face burn, or photodynamic therapy, in which Dr. Lin, or rather her assistant working a machine, burns the top layer of skin off of my face to head off any lurking skin cancers and get rid of thingies that are on the surface of my skin. In the long run a better alternative to zapping them but not fun while it is happening.

To recap, it feels like the worst sunburn ever. But you move a handheld blower around your face and think of something else and it the time goes by. I can't remember the exact time, but it is less than 15 minutes.

Then out to lunch and then back home to finish a writing assignment. I'm working on three stories in between all this medical stuff this week.

Oh, and on Monday I went to the dentist and found out that the enamel is wearing off on the outside of my "good" chewing side and I will need two root canals and two crowns.

I'll think about that tomorrow.

1 comment:

Anonymous said...

My best friend passed away from AML on Sunday, Feb 25, 2018, I am devastated. She fought so hard to live through the treatments, pain, flu, pneumonia, etc. but survived only 5 months after diagnosis and was in remission only 3 weeks until the leukemia came back. Her goal of getting stem cells never came to fruition, but she hoped her treatment would help her wonderful doctors learn more to help others with AML. I'm so glad the treatments which failed her worked for you, my friend is truly a hero, just like yourself.