So it's been about a month now with my new cells. Things have not been easy, but just getting out of the hospital was a battle, as I just need to be home. I was able to come home on 8/10/11, just shy of my birthday (another milestone- I've lived to see 43!). The first week home was fine mentally, but physically exhausting and painful. Stairs are daunting, showering- difficult to stand too long, and my hands shake like a Parkinson's patient. (my writing is almost illegible) I also broke out in a rash in many places - and that can be a sign of rejection. Luckily? It itched like mad, *scratch, scratch*, which it usually wouldn't in the typical "rejection" type of rash. But I can be different and special, so off to the Dermatologist, and 2 skin biopsies. (no fun there!) I found out the results yesterday, and it is caused by the chemo, not rejection. Whew! Hopefully, I will continue on that note. They gave me a lot of ointments and put me on steroids for a bit, and it's helping the mad itching and healing process.
I am not sleeping at night, even on those precious days where I try to skip day sleeping. I am literally up 1/2 the night, every night now. I've tried different pills and loads of suggestions (dark room, turn off electronics earlier before bed, cool room, reading, etc...) and nothing is working, nor am I crashing after a few days. Wonder why... I did end up in hysterics the other night due to the memories of all this and all the time lost, and just how I felt in the hospital- so trapped and pumped full of poisons; I feel kind of abused in a way, if that's the word I'm looking for. I imagine it won't be the last time for hysterics, but I hope it's not a regular visitor! Chris helped me through it to calm down after an hour or so, along with some of my high end anxiety medication... So thankful for both of them! :)
My cousin and I were texting the other day about getting our children together, as my mom has done all summer with her. The kids love each other! I told her he had camp all week, but maybe we could come over after it one day to play. She said, oh, your mom will text me to set things up. And from the outset, you see they've been doing this all summer, so it's natural to come out with that, but do you also see where it left me feeling? Like I'm not even the child's mother anymore. Made me cry. And it's not her fault, I don't blame her. But it hurt.
Anyway, things are stable for now for the most part. Let's hope it continues to be so while I look over my shoulder for awhile yet! I still want to write my donor and thank her- I'm just not sure what to say yet, and what "not" to say, as you are supposed to be anonymous. I am just the 42 yr old woman who received cells.
In a week or 2, I will have another bone marrow biopsy to see how far the engrafted cells have progressed. Should be interesting, other than the pain of course. LOL!