Notes From Supergirl

My Diary from the Trenches

Day 593

January12

Yesterday went well, which was a huge relief. My platelets came up a little (up to 59,000) and my white count is back to normal. Red count is almost there, but much improved. The doctor was not at all concerned with this growing rash/acne thing I have on the sides of my face and neck. He said he thinks it is most likely a reaction to one of the medications I am taking, but he can’t take me off of any of them, so I need to live with it. That was good news; however, I can’t say I’m thrilled to have this teenage acne all over my face. It’s a real challenge to my self-esteem to look in the mirror right now – bald and everything above my shoulders breaking out. I know that if this is the worst side effect I have, I am truly blessed, and I mean that. I just have to remind myself of that … every time I’m in the bathroom :)

I was supposed to get my line out yesterday but there was a 4-5 hour backup in the department that removes the line. Now I scheduled to have it out tomorrow morning and just have to hope my platelets remain above 50. They should because they should be going up. I’ve just learned to be prepared for the unexpected. I actually tried that approach yesterday when I went to the doctor. I went in preparing for the worst (lower counts) and was thrilled when they actually went up. It felt better than the days I go in expecting everything to be great and then getting bad news. It sounds like a pessimistic attitude, but as my husband would say, it’s really just being a realist. I’m not giving up on optimism, just trying to recognize that there are lots of ups and downs and it’s easier to deal with the downs when I recognize they are par for the course.

But, in really, really exciting news, I got a letter from my donor!!! We have to remain anonymous to each other for one year following the transplant, but she was kind enough to send me a Christmas card to say that she thinks about me all the time and hopes everything went well. And, it was all written in German! So I’m not sure now whether she is actually a German citizen or if she is part of the US military as my nurses led me to believe. She may not know that I am American and she could have assumed she was donating to a German. So many questions! Regardless, it is obvious that she is someone with an incredible heart to not only donate her cells but to reach out to me. I will be writing her a letter this weekend. I can tell her anything about myself, I just can’t reveal my identity. It’s so exciting for me and it has brought such beautiful new meaning to my new cells because I now have this kind, wonderful person to attach them to. I am also optimistic that I could meet her one day – one more amazing thing to add to the vision board.

Another unexpected surprise is that I ran into one of the people I have befriended through this experience, Dan, at the hospital yesterday. He went through the same regimen that I did with the autotransplant. He has been a huge inspiration to me as he left the hospital and literally started climbing mountains on his bike. He rides to ridiculous heights, but has once again proved how strong you can become after an experience like this.

Today I had a wonderful meeting with Roseann and we have lots of great things we are working on for Team Inspiration and the Healing House. I also snuck outside for a bit to smell the fresh air and feel the sunshine. My doctor might not be happy with me, but I thought a little dose of vitamin D would be a good thing.

I don’t have to go back to the hospital now until Wednesday – wahoo! If I’m not back on here before Sunday, GO RAVENS!!!!

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