After a bit of time in the hospital for the transplant, I was looking forward to February 1st. I was really hoping to get out of the hospital on Kym's birthday. As it was, I couldn't do that. I was being treated for graft vs host disease (where the cells wake up one morning to find themselves in what I can only imagine must seem like the Land of Oz to them... I guess they landed on a monocyte with Ruby Slippers). The thing is, I was probably addicted to morphine at the time. So in retrospect, there is a good possibility I was just undergoing withdrawal, which can produce surprisingly similar symptoms as GvH. Oh well, hindsight is 20/20 and I'm not a doctor.
But I wasn't happy about this. I was so unhappy, I didn't even wish Kym a happy birthday. It doesn't make sense, and I feel like a pretty big dick about it now. But in my lame defense (what kind of brother doesn't wish his big sister a happy birthday?) this was around the time that I was taken off of my anti-depressant due to the serotonin syndrome. This was a very terrible time, and my spirits hit rock bottom.
The 22 year old boy in the next room lost his months-long battle with leukemia on February 5th. I don't think in my entire life have I ever had a more negative outlook on... well, everything... than those first few days in February. It was 4 months ago and I hardly even remember a lot of it, but it's still hard to seriously talk about. I imagine it will be that way for a very long time.
The good news is I went home on the 8th. I was released from the hospital and joined Bill and Kym at their apartment. They had gotten the carpets all shampooed and the entire apartment sanitized. Any visitors for a few months had to wear surgical masks in the apartment and my diet was extremely limited.
No fresh fruits or vegetables
Nothing from restaurants
Thick skinned fruits were okay, but you still needed to wash them before cutting
Cans had to be wiped down before I opened them
No deli meat
I could have commercial-packaged deli meat, but I had to microwave it first as to not let listeria.
No deli cheese, again packaged OK
No fresh bread or pastries
No fresh spices, all must be thoroughly cooked
Frozen vegetables, okay
Frozen fruits, NOT okay
The easy way to think about it was that everything had to be either cooked or processed.
For the first few days after being released, they were still worried about GvH so my dairy intake was limited as well. Limited = banned.
At this point though, being out of the hospital and having my own room without nurses coming in every four hours, my spirits lifted so quickly it was like night and day. I was much happier. My muscles atrophied a ton during my four months in the hospital.
I ran a 50k race a month before getting sick, and now I couldn't even walk up the stairs without getting completely winded. I went into the hospital at 165 lbs, and my first day out I was sitting at 119. 119 with no hair/eyebrows, very skinny arms, bones visible, thin neck. Looking at a photo, it was pretty disgusting.
Oh yeah. At one point I got a staph infection from TPN (because I wasn't eating) and had to get my two blood spigots removed.. again. The replaced this with yet another PICC line in my left upper arm, and I was sent home with it. I was also sent home with IV antibiotics that I had the wonderful pleasure of administering to myself. Bill, my dad, and Kym... mostly Kym... helped out with that because it was a very difficult one man process. The other thing was that every time I took a shower, I had to waterproof the thing.
That was annoying more than anything. But it was soooooooo great to be back.
So anyway, I had a doctors appointment with my Transplant Oncologist, Dr. Grant, every week for a while. I got a blood test, vitals taken, medications reviewed. My mom came up, my dad came up, a few friends came to visit, Kym and Bill continued to sanitize everything every day. They bought my groceries and prevented me from doing stupid things. At one point, some GvH flared up and I had to go back on steroids for a while.
Days turned into weeks. Weeks turned into months. And then my aunt and sister (Meddy) came to take care of me for two weeks in April while Kym and Bill finally got to go on their honeymoon...
And while they were away, I successfully hit my first major milestone. Day 100.
And with that, I will leave you until the final conclusion of 19 Years Later: A Broclergaard's Tale.