Notes From Supergirl

My Diary from the Trenches

Day 605

January24

I apologize for the lack of updates this week. Somehow I am managing to keep myself very busy with no place to go. Let’s just say my house is getting very clean and organized and I’m slowly working my way back into shape. But here is the update from today … the biopsy results came back and showed that the rash on my face is in fact a drug reaction. I was a little surprised, but it’s not a bad thing. It’s probably a good thing, actually. It means that I didn’t have (so far) a case of acute skin GVHD, which means that the chances of me having chronic skin issues from GVHD are far less now. That’s a wonderful thing. As far as which drug I’m reacting to, the only way to determine that will be trial and error. We are slowly tapering down the steroids and I will go off of the new antibiotic that was added in about two weeks. At that point, we will watch and see what happens and then start switching out medications if the rash returns. It is unlikely that it is one of my immune suppressants because we have increased the doses on those since the rash started. I have actually already stopped one of the antacids that I was on because it was giving me headaches (I have to take that to stop my stomach from freaking out from all of the other medications). So it will be interesting to see if it doesn’t return and the antacid was the cause. Other than that, I am just on a regular antibiotic and the antifungal that I have been on and off of since the liver infection. Thus, it shouldn’t take too long to figure it out, but it means I can now list at least 5 medications that I have developed allergies to in the last two years. Funny how I was never allergic to anything before this.

One very important piece of good news in all of this is that my counts have been climbing up beautifully. My platelets were 148,000 today!!! My red cells are almost normal and my white is also completely normal at 9.1. This is actually on the high end but as a result of the steroids. Once the steroids taper down, my white should balance out at a nice level. The platelets are all mine though; i.e. not the result of steroids but the result of my immune system working! Last week when I found out they were over 110,000 I actually started crying tears of joy in the doctor’s office. I told my friends that if my platelets make it to 200,000  I will probably pee myself. But just FYI, normal platelet counts start at 150,000 and my doctor informed me today that my platelets are actually higher than his right now so this is the closest I have been to normal in at least 2 years. As surreal as this whole experience has been, to have that part of me be “normal” again, even if it’s temporary, is also surreal and wonderful.

The doctor said to expect ups and downs as things move forward. One day my platelets might be 250,000 and then they drop to 80,000 and it doesn’t necessarily mean that anything is wrong. It is just part of the adjustment period. He said the best thing I can do is keep exercising to rebuild my strength and stamina (uh, okay!) and just be patient. Thank goodness I have gotten to enjoy some good news this past week because it is really helping with the patience part.

Medical stuff aside, I’m finding this time at home to be somewhat inspiring. My creativity has been surging lately with lots of new ideas for work and personal projects. And believe it or not, I actually have a lot of stuff to keep me busy. I also started driving last week so I’m enjoying being able to take the kids to school. It’s the little things that help me feel more connected to the world and “normal.” I can’t imagine anyone gets nearly as excited about picking their kids up from school as I do! But just think how happy you would be if those little things in life actually brought you that much joy. It’s something I savor and am grateful for.

I’m going to post again soon to talk more about some of my creative ventures, but before I go for today I just wanted to say another thank you to the Ulman Fund for Chef Dawn. She came yesterday and prepared a week’s worth of scrumptious meals for us. I also want to thank Matt for making the trek up here to hang out with me. I have to say that I love that I get to see so many of my friends right now. I am definitely feeling really lucky. And speaking of lucky, yesterday was the start of the Chinese New Year and this year is the Year of the Dragon. Guess who’s a dragon? You got it! I’ll take all the dragon superpowers I can this year to make it my best year yet!

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