In a more perfect world, I would be going home on day 70. But the GvHD rash has other ideas. Yesterday it attacked with a vengeance. I now have rash on my face/head, back, chest, shoulders, arms, belly and hands. Luckily it has stayed on the upper half of my body (so far). I am lucky that it doesn’t itch or I would be going insane(r). I mentioned before that if the rash is all the GvHD I have to deal with that it wouldn’t be a real bad thing. Well, it would be bad if I didn’t have Teresa, but with Teresa’s help, it’s not a real bad thing, just a really annoying thing.
Today I see a pulmonologist about this stupid cough. It’s still really bad at night. Not so bad during the day. Cough a whole lot when I lay down. Cough for a good 20-30 minutes when I do go to bed.
Not sleeping good. Well, the sleep I get it good, but I am waking up at 4:40am wide awake. And today I wanted to sleep til the alarm went off cuz we have a full morning ahead of us. Blood Draw, Pulmonologist, Nurse, Doctor. All before noon. I’m gonna be dragging cuz I normally take a nap around 9am instead I will be hopefully done with the pulmonologist and waiting for the nurse. Yes, I see a Nurse before I see the doctor every time.
It’s 6am. 1 hour before blood draw time. Luckily they do that here at the transplant house. This time along with all the other tests, they are testing me for all sorts of vitamin deficiencies. Seems that the stomach surgery of years ago really has messed with my system. I was low on copper. Nowadays, the only people who have copper deficiencies are the impoverished countries. Totally blew my doc’s mind when my copper came back so low. So I am now taking copper pills too. Todays tests will show whatever else I am lacking in. And that will mean more pills. I take more than enough pills. Oh, you ask why don’t I take a multivitamin… 3 days of insomnia off of 1 pill. So I have to take each vitamin or mineral separate.
I miss my doggies. I had held hope to be out of here by my birthday (not going to happen) and get to see them. But NOOOOOOOOOO, stupid GvHD has reared it’s ugly head again and I am stuck here for at least 33 more days.
The GvHD rash has come back as we have been lowering the prednisone. Coincidence, I think not. The steroid was holding it at bay, but as the steroid is lowered the rash gets worse. Can’t stay on high dose (Or any dose) of Prednisone for a long time, so Dr. Alkhateeb will have to come up with a different solution. He said the other day, this isn’t a science, this is an artform… well get out your paintbrush and paint me a cure.
Went to Buffalo Wild Wings for dinner last night. Just have to say that my boneless wings were fantastic. I am not normally a big fan of wings. But these were delicious. And the sweet bbq sauce (the first one, the one with zero heat) was very tasty. I actually look forward to going back to BWW.
I also picked out a cake for my birthday. Daubie’s Bakery makes a Vanilla with Raspberry cake that is to die for. Teresa and I bought little sample cakes day before yesterday and had them last night. Hers was ok, she isn’t a fan of walnuts. But my cake was great. Now if I only had friends here to share it with.
Yes, I have went out of my way to avoid making friends here. I’m a terrible person. But I am dealing with my own issues, I don’t want/need to hear other people’s problems. And that seems to be the #1 topic from everyone, either the patients or the caregivers, they just want to talk about their issues. Fine, find someone else to unload on, this guy is mentally unstable enough without adding your problems to it
The other issue is most of the people who stay here are short timers. Being a long timer, making friends with someone who is here for 2 weeks seems futile. So, I Just avoid becoming friends with anyone.
I have to wake Teresa to put the steroid cream on my rash spots. She set her alarm but put in earbuds (to drown out my coughing) so she can’t hear her alarm going off. She uses music to wake to, I choose BEEP sounds cuz otherwise I dream the music in my head and don’t wake up.
Peace to you people who read this.
Not music, but still entertaining. At least to me.