June = hospital

Well, folks, it seems I cannot get through June without landing myself in the hospital. The past year and a half has been super busy and I had a couple of posts started to get you guys caught up BUT like my well-loved metaphor of Whack-A-Mole, we had a new “mole” pop up. I’ll focus this post focused on just info about my current condition and then we can talk about other projects in the work that you may be able to help with.

Back in about March I had some places on my skin come up that were giving me problems. They were on radiated skin near the graft from my reconstruction. I treated it myself with my normal routine when skin stuff comes up (because I know with graft-vs-host I will have things come up from time to time). That didn’t help. I asked a friend in the medical field for advice and tried a different type of bandage. That didn’t help. I spoke with my BMT doctor and NP and they believed it was graft-vs-host related because of the delayed healing. I started a new immunosuppressant and did four weekly infusions of a drug to treat that along with starting to go to wound care. Both of those things helped. The infusion treatments made me aware that I had much more musculoskeletal issues going on than I realized. My body felt so much better on the inside after those treatments! Also, the wound care doctor’s treatments were helping the two wounds to start making progress. We finally had this headed in the right direction!

On June 16 I started my volunteer position with LLS (Leukemia and Lymphoma Society) and the hospital on the BMT floor. They made a big to-do about it, took photos and videos, and interviewed me. I visited a couple of patients – it was wonderful! [this is really the post I want to be writing because I have been jumping through hoops for a year to get this to happen and have fun new ideas to help the patients that YOU can be a part of too, but I will get to that in another post] Friday morning I started running a fever – a high one. It hung out all weekend so I contacted my NP on Monday morning. We started some antibiotics and I knew I had an appointment with wound care on Wednesday so I just kept it like it was. At the appointment, we agreed that the one place on my side had made amazing improvement, but the place on top was still looking pretty bad. My doctor did say though that it looked like the infection may have caused the non-viable tissue to have separated from the wound bed and he thought he could get it cleaned up pretty well right then. Yay! Great news! We were chatting while he was dealing with my grossness and then he stops and says “oh shoot! there’s your implant!” I knew what that meant. Lots of wheels started moving at that moment and this past Thursday I had emergency-ish surgery to remove the implant, clean out the massive amount of infection and dead tissue and have a wound vac placed. The upside of all of that is that I am back in my old home – 5 South – the BMT unit – with my people. We have had a fun reunion this week. I even got to visit a new patient on Friday (I mean, this was way more convenient than driving here from Sparta). Today she did the first dressing change for the wound vac – it had to be done in the OR and she had to evaluate everything. No real signs of infection (they did take cultures just to be sure) and just a scant amount of non-viable tissue to remove. I will go home with a wound vac and have to have home health come 3 times a week to change the dressings for me – this will be for several weeks at least. After that, we will reevaluate and discuss the next step. The surgeon does not believe the wound will heal on its own – even part of my pectoral muscle died and was gone, no wonder I’ve been losing range of motion and strength! She anticipates having to do some type of free flap procedure that will be pretty major. Of course, I am not looking forward to that.

Oh, and we got another surprise. We were having trouble getting my pain under control so my doctor wanted to do a chest x-ray just to make sure nothing else was going on. I have 14 rib fractures. Yes, I said f-o-u-r-t-e-e-n. This is most likely due to my bones being brittle from the chemo and other meds. I am going to have a bone density test most likely tomorrow. My mind went to a lot of bad places today with that news.

Anywho, to wrap it all up, I will likely go home Thursday or Friday. And of course, we covet your prayers once again. If you want specific lists, here goes:
*all of the infection to be gone
*no more fevers
*this rib thing not to be anything but brittle bones and nothing cancer-related
*and that maybe this place will miraculously heal and I won’t need surgery (I mean, it doesn’t hurt to ask, right? Go big or Go home? It’s worth a try!)

I’ll try to keep you all posted, but feel free to check in if I’m not updating enough as I am so prone to do 😉 Then once we get all of this mess under control I can let you know what I’ve been up to the past year and what we are starting here at the hospital – it’s exciting stuff!!!