Once the excitement of my new birthday had passed and everyone had returned to whatever it is that they were doing I was left with plenty of time to think about what had just happened and what was going to happen in the future. I understood the “theory”. For all practicable purposes the good doctors and nurses had completely destroyed my existing immune system. I was officially the “boy in the bubble” although I am not sure that even his counts were as low as mine. All I had to do was wait for those freshly planted stem cells to grow and I would be as good as new….. better then new. Have they actually done this before to other people? Did it really work? It all sounded simple enough in theory but now it was no longer theory… it was my body that was being used for this little science experiment. I used to be pretty good growing tomatoes… I guess it was the same idea.. without the dirt.
The more I got thinking about those tomatoes the more my mind wandered.. I had always grown tomatoes from small plants… never from seeds. I had planted radishes from seeds before. They seemed to always grow OK… they grew pretty quickly too. So maybe these new cells inside me where going to grow like radishes… but then I got thinking…how about if they were like carrots. I NEVER had any luck growing carrots…mmmm. One by one I want through my entire horticultural lifetime experience… vegetable by vegetable… The conclusion of that mental exercise was to hope that these people were better at growing cells then I was at growing vegetables.. oh well.. what’s the worst that can happen?
A quick thought though shift got me onto that subject….what is the worst that can happen and how would I adjust..after all I had managed to adjust to everything else that life had sent my way…mmmm.. what if those cells didn’t grow? Maybe I could live in a little room at Sloan Kettering. I was starting to get used to it… I had a room with a bit of a view…. Spring was only 3 months away… I had Internet access… I worked for an Internet based company. Sure… I could do that.. no big deal…. The insurance company probably wouldn’t even notice. Whew..enough of that. Another one of life’s problems solved. Back to the TV.. I had just worked pretty hard but it was worth it… I could sleep well knowing thievery would be OK.
The next few days were pretty uneventful.. the whole “growing” thing wasn’t supposed to happen until 10 days after transplant. The nurses came and went. The A Team came in once a day to check up on me. I spent most of my day on the computer.. emailing back and forth. Visitors came and went. It was very nice having visitors but I was quite conscious of their time and the fact that my idea of a good time… at the moment… was quite different then their idea. I was somewhat conscious of the world beyond my door.. I tried to not think about it much because that door was a long time from being able to open for me.
I handled the time issue a little like I did out in the real world. I’m not sure if I’ve mentioned it before but the absolute worst day of the year for me is the day we switch from Daylight Savings time to regular time..OMG I can’t tell you how much I hate that day… over the years I have managed to play little mind games with myself to get from that day… through the shortest day of the year December 21st… and back to Daylight Savings and the longer days.
I am involved in an annual Christmas Tree sale at my church which absorbs a lot of time… right through the shortest day of the year. Then there are the holidays…After that football (real and fantasy) intensifies all the way until sometime in early February. On February 12th..the sun actually rises as my morning train pulls out of the station (655AM) and sets as my evening train leaves the station (527PM)… From that day on the days get noticeably longer until the TV guy tell you its time to turn your clocks back again… a sign that you made it through another winter.
I had made up my mind that I would handle this voluntary incarceration the same way. This time period even coincided with that period above (minus the fact that I wasn’t going to sell many Christmas trees from the 10th floor on York Avenue.
I came to the conclusion early on that the best way to pass time was to stay busy. I had my office set up in the room. The closer I could keep to standard work activities the better Id be and the faster the time would pass.
This worked…. for a while. Each day the A Team came in and each day I smiled and kept up my Mr Happy approach. As each day went by the A Team seemed a little more confused/concerned… “Are you sure you feel OK?” “How are you eating?”. I remember the one day confessing that I wasn’t able to eat a full dinner but was able to eat a bowl of soup and 3 Ice Creams…. From their reaction I guessed that maybe I was supposed to be telling them that I was unable to keep food down… mmmm..
Everyone was worried about mouth sores. I had heard that they could be pretty bad I wasn’t exactly sure why until one of the nurses told me a fairly disgusting (gross) story… I forget exactly what day it was but within this 0 count period. She said “The reason you are so susceptible to sores is at some point the outside layer of your entire digestive system from your mouth to … the other end sloughs off and is discharged. Holy Sh T!!!! NOW THAT WAS AN IMAGE. It was an image that was real hard to shake. I had burned the top of my mouth before on hot pizza or pot pie…. I certainly knew how that felt.. and that was with all the blood counts in the world.. running free in my home town….
By Day 7 I had fought reality about as long as I was going to. I had developed some sores and had some drug pump hooked up. I never did quite figure out how to work it. I was going through the motions of working but (Hindsight wise) I guess I was pretty messed up. Below is an email that I know took me over an hour to compose. I remember looking over it many times to make sure it was correct. Once it was correct I hit the sand button and then closed up shop for the day.
Last email Dec 14th
I guess you don’t know until you try. Yesterday and today… I showed how I functioned at zeros across the board.I am having a HARD
TIME WITH SIMPLE TYPING… WEIRD
hOP QLL IW GOING OK
sEE YOU TOMORROW
The next morning I got a call with a WTF? I guess it was time to take a few days off.
Luckily I was ready for that too. I was a product of the 60’s and 70’s and although I wasn’t really a druggy (too expensive…. I was a beer drinker instead) I really liked the drug music of the time. My buddies from the train had swiped me a poster from the train for a Jimi Hendrix concert and had hung it on my wall in the hospital. Before entering the hospital I had bought an Ipad and download a ton of music from that era including Hendrix The Doors Janis Joplin etc etc.
Well… on Day 8 I dimmed the lights closed the curtains put in my earbuds cranked up the music and enjoyed the high…… Purple Haze…. Nice. The Ateam actually looked happy to see me there for a day in a stupor. The nurses still came in and did what nurses do. The aids still came in and went through the motions of doing what they were supposed to be doing before they got back to the home shopping network in the lounge outside the room… I managed to eat an ice cream or two… I slept a lot and listened to a lot of music….Time… at that point.. had no meaning.. For exercise.. I got up and sat in my chair and stared out the window at the lights on the 59th Street bridge…. I remember thinking…. WOW… As high as I was I still managed to think about where I was and what was going to happen next…. hopefully. I was completely at peace with myself bring in God’s hands. What was going to happen was going to happen…. and for a reason. The one thing that I didn’t want to be sitting in a chair staring at lights and high for any extended period of time… Then came Day 10
Day 10 was the day that had been bantered around for months as the day that the stem cell “Garden” should start to grow. As a C minus chemistry student I was thinking 10 but knew I wasn’t going to worry until 11-12 or even 13. The A Team came in as usual. I had the Hendrix music off by then and actually felt pretty good. I’m not sure if the “feeling good” was real or if it was because I had told myself I’d be feeling good by day 10. After a little small talk the nurse (or doctor) said…”Your count is point 5… like one half of one. Well…… I can’t tell you how good that felt. Damn!!! I thought…. this stuff is actually working. Don’t get me wrong… in the real world… a point 5 is one foot in the grave (maybe both) but in transplant land….. it was the beginning of life not the end.
When the A Team left… I opened the curtains as wide as they would go. Tore the aide away from the Home Shopping Network and told her I needed her to play lifeguard as I went in and got a shower.. took a great shower…. skipped shaving because my platelets were still way down and I wasn’t going anywhere but inside my room. I came out and set my computer back up called my wife and my business partner……. JACK WAS BACK.. so to speak… Whew…. never any doubt…mmmmmmm