Day +2

At least we're counting up now. I had a tough time sleeping last night. Yesterday, we discovered some pretty bad skin lacerations underneath my catheter dressing which sits on the right side of my chest. What happened was that the dressing had to get changed so much during those three days I was on Thiotepa. I was showering three times a day for about three days, and the nurses were changing the dressing each time, so that is nine rips off the skin of this strong adhesive tape. Yesterday it hurt SO bad. It felt like a burn because there's basically a layer of skin missing around the top and right side of my dressing.

What we ended up deciding to do was eliminate any tape in the dressing to prevent ripping off any more of my skin. We changed to an all-gauze dressing, and not even the regular kind of gauze because we tried that once and it was getting stuck in the oozing skin. I asked for some topical antibiotic to prevent infection (especially since these injuries are super close to my catheter site which is REALLY dangerous if it gets infected). So that's all over me now, and I have some special no-stick gauze dressing and a wrap around my upper chest to keep it in place. It was almost impossible to get comfortable to sleep with, but the good news is the whole thing is feeling better today. I am just praying this thing heals before my counts drop all the way down to zero because basically what that means is that I have no immune system to fight this and it may delay me getting out of here which, of course, is my ultimate goal.

So, I hope nobody was too grossed out by that. I had to write about it though because not only am I using this blog to keep you informed, but it's my journal, my therapy and my record of all these horrible things that I will never have to go through again. Leading us to our next topic of discussion, my rash. I've developed an itchy rash that they think is related to the Thiotepa on my stomach and back areas. It's really itchy and Benedryl would probably help but it knocks me out so hardcore that I am waiting to take some until I eat breakfast. They've got a lot of medications that I can take and have tried to help alleviate these painful and annoying symptoms but it's like half the time the medication is worse than the ailment. Morphine is not that fun people. So I am waiting for my day nurse to show her face before I ask about this rash because it really started bugging me during the night.

My white count is down to 1.2, so I am getting close to that bottoming out point. I am actually looking forward to it in a strange way because then I can just be sick, lay here for a few days and be miserable and drink Ensure and hope that my numbers start coming up around day +9. It's the turning point I need-the next hump to crawl over.

My hearing is still the same, a lot of weird tones and ringing and I can't hear as well but it's not the acute bother that I am worried about, it's the long term. Dr. DiPersio seems to think if it's not getting worse (which I don't think it is) then it will eventually get better. All we can do is wait and see. When I get out, I will see a ENT doctor or possibly just an audiologist to assess where my hearing is at that point. Scary, but unfortunately I have worse things to worry about right now.

I am exhausted today cause I really didn't sleep much last night. But I am about to eat some breakfast and I want to try walking at least a little bit so I can just get out of this bed and feel like I've done something. Check with you in a couple days.