Notes From Supergirl

My Diary from the Trenches

Day 591

January10

Thank you all for the birthday wishes, surprises and phone calls. It was a fun day and got to talk to and see a few people that were big surprises to me, which was great. I got a surprise balloon delivery from a great friend in the morning, lunch with another great gal in the afternoon and then a few surprises from my kids in the evening. I also got to catch up with some long-time friends by phone, which is always wonderful.

The day started off a little sketchy. I had noticed a small rash on the side of my face and neck the night before so I woke up expecting to spend the day at the hospital. But after speaking with the doctor, he felt he was fine to wait and see me until Wednesday. There are a million reasons why I could have this rash: a food allergy (which I have yet to figure out), GVHD (graft versus host disease), a reaction to a skin care product (again, which I can’t figure out), or my favorite, acne. Initially, I was almost excited to see the rash because they had told me that having a little bit of GVHD is actually a good thing – it’s a sign that the transplant is working. However, then I realized that when my counts dropped last week they were checking me for shingles which is something that can come up in post-transplant patients. I described the rash and sent pictures to Melly (the doc) who quickly pointed out the reasons that it probably wasn’t shingles and that one of the side-effects of my immune suppressant is acne. Sadly, we were all very excited that I might have acne and not shingles! So happy 36th birthday to me – I now might have adolescent acne again. Do I feel 14 again? In a way yes, my life sometimes feels like a dramatic mess, but acne is no longer the thing ruining my life! Guess I have matured in 20 years.

I ran 2 miles on the treadmill yesterday and then did 30 minutes of Dance Revolution with Kieran. I was fine after the run, but the dancing proved the real work out. One day I’ll figure out how to post the pictures that the Kinect captures. It’s hilarious, but the most fun workout you could ask for.

I’m feeling okay overall. Definitely not 100%, more like 60-70%. The thing I am finding most difficult now is that I want to go outside so badly and at least go for a walk. I may be begging and pleading with the doctor tomorrow to let me do that. I’m also going to try driving today. I think that will offer me a sense of freedom as well. I don’t need to get out of the car, but just being able to go somewhere besides my house and the hospital would be great. I may just drive around the neighborhood and listen to the radio cranked up!

Tomorrow is a big day. I’ll find out what is happening with my counts and if all is well they will pull my line out. They will also run the blood test to determine what percentage of donor cells I have. We’re getting there, slowly but surely.

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