Diagnosed and medicated, finally

Morning meds

I learned yesterday that I have colitis, not a flareup of intestinal graft vs. host, and when I got home from my photopheresis yesterday, I celebrated with a walk/run.

Why celebrate? Why run when I said I had given it up?

Well, I'm happy because I got a diagnosis and because if it was GVHD that would have meant increasing the prednisone that we have worked so hard to lower to just 1 mg. daily now to treat the GVHD of the liver. I am taking two antibiotics and a nonabsorbable steroid, meaning it will not spread throughout my system.

As for the little walk/run, I needed to get some exercise after spending three hours in the car and three getting treatment. I didn't have the energy to go swimming, and since running has for a long time been my fall-back, I decided to give it a try, figuring if my toe hurt again I would just make it a walk. It worked out well. Now I still need to find a better pair of sneakers.

Esther, my nurse yesterday at the Kraft Blood Donor, said she had some presents for me. One was a lidocaine cream to rub on the area where the needle would go into my arm, and the other was a shot of lidocaine before the needle went in. She had heard about the pain that I had last week, and she didn't want me to go through that again. She also gave me a small tube to take home with me so I can put the cream on next time 20 minutes before the procedure.

I am happy to be making some new nurse friends. I was indirectly compensated for my pain and suffering at the endoscopy center last week. The nurses shared the pizza and cookies that someone had sent down to compensate them for their pain and suffering on the date that the new Epic system was launched.

Pain and suffering – her words, not mine – are of course all relative in this messed up world, but she said that they felt their own version when no computer trainer was in sight in a room full of nurses. But they were joking about it, taking it in stride, which is all that you can do.

I wouldn't have liked to be the public relations person who wrote about the switch to the Epic system last Saturday.

"Despite a fell small bumps – an issue early in the day with the Command Center Service Desk, which was resolved quickly, and some user access issues – the implementation on Saturday was remarkably smooth," according to the lead story in Dana-Farber's Inside the Institute.

Esther told me she had heard about a lot of problems similar to mine.

Oh well, at least we got pizza and cookies. Admittedly I took a chance in eating it, but it went down OK.