But it is great when you need to call out for help, which is just what I got the other day when I awoke from a nightmare and posted this:
"Checking in with my nurse practitioner today after photopheresis. Should be fine. Horrible nightmares, though. The nurses wouldn’t let me leave my bed while I waited for test results and the arrival of a pill. I couldn’t get home to my kids. I had stories due, but I couldn’t get back to work. I tried to call my editor but she had left for the day. I had walked into a door and broken my glasses and could not see. The nurses said I had lesions on my lung and a couple of other spots. I would need to find another new specialist. I wonder, does it ever end?"
Thank you everyone for the support that poured in. I felt better and better as I read the good thoughts. Obviously none of it happened, although the fact remains that I still have a lot to hold in my head. But to quote my father, I can't complain, especially when thinking of my dear friend Patricia, aka PJ, who died a year ago this month from the same horrible disease.
Almost by accident, I learned some exciting news. Each week of pheresis you get a CBC, and when my nurse Esther had said that my hematocrit was good enough for the procedure – 31.2 – she also said, "Platelets, 188." I had her repeat it. Yes, within the normal range for the first time since my transplant. Considering that at one time that they were down to two or three, that is a big deal. Melissa explained that when graft vs. host improves, your counts go up too. (Normal is 150 to 450, or 150,000 to 450,000/mcL.)
The logistics of the weekend worked themselves out in an interesting way. After Friday's pheresis, my former boyfriend Rook and his lovely wife Annie picked me up at Dana-Farber so we could have some fun before I was due that evening at Margaret's house for her son Natty's high school graduation party. We went shopping at REI, which we don't have around here, and then went out for lunch and a walk before they dropped me at Margaret's. It tickles me that since Annie liked my blue Beverly Bloomberg watch, Rook gave me the money to get one for her and send it to him to give her for her birthday. So, buying a birthday present for your former boyfriend's wife. It is nice when people cycle back in.
"My" room at Margaret's was taken by visiting relatives, so I slept nearby at her brother Mark's house. Then back to Margaret's for brunch, picked up by The Ride to go back to Dana-Farber, and then getting my other ride back home for a long nap in the car.