Round one of the endless waiting game began shortly after I received my beloved pain pump. My round of chemotherapy was finished and I had moved on to a brief stint taking an oral chemo drug. This drug was not part of the typical chemo regimen for Acute Myeloid Leukemia, but there were trials being held around the country that showed promise to combat the FLT-3 mutation with an oral drug. The oral drug in question is mostly used for liver cancer currently, and can be taken in the comfort of my own home, but I was still confined within the beige walls of 11 South because my immune system was still firmly in zero territories (at least my liver won’t get cancer). The doctors informed me that I would be released on my own recognizance (I use legal terms because I was being held against my will much like a prison sentence and was soon facing a court date to receive bail) once my counts reached the two hundred zone. Although they predicted that it would take a while, there were many little blips that arose to keep things interesting.
Due to the continuous fevers and the fact that both the culture team and I were sick of seeing each other, I was sent for a CT of my chest. Previously I said that 99.8% of the time my fevers were just a side effect of the chemotherapy and not an actual infection, but this time they found the .2%. According to the CT scan, there was a chest infection manifesting itself as lower lobe “stuff” that looked fungal (wow, what a brilliant medical diagnosis). And so, on one of the rare times that my mother had left my side that first cycle to return to Harrisburg for the night, the doctors decided to schedule me for both a bronchoscopy and a lavage. A bronchoscopy is when a tiny camera is put down your throat in order to get a look at all that’s going on in your lungs, while a lavage is when doctors fill your lungs with fluid to mix up and move around any junk lying around. Needless to say, I was quite worried about the fact that I would basically be put to sleep in order to be drowned with fluid in my lungs. Not to mention the fact that I was warned of the possibility of waking up with a breathing tube after the procedures. And I was a temporarily parentless adult who had to give consent all on my own.
Yeah Alex, I’ll take “Can I Legally be a Kid Again?” for 300?
The procedures took place, I woke up breathing tube-free, and I gained a handy little toy that was supposed to help improve my breathing and beat the lung infection, not to mention two new medications to add to my grocery list of pills to take each morning. All in all, the bronchoscopy was a piece of cake and my lung problems weren’t much to be concerned about (after all, how badly can lower lobe “stuff” be?). My biggest problem proved to be my continuously faulty PICC line.
Already on my second PICC in a matter of weeks due to a blood clot, my newest PICC line had to be pulled when I got another fever because it was believed to be the source of an infection. Although later they found the infection in my lungs, the deed had already been done – the PICC already pulled – and so I was in need of a new one. Both of my arms were out of the picture because they’d already failed me before, and so obviously the next best option would be to place it in my neck (yeah, totally, what a perfect choice). If I thought sleeping was hard with IVs attached to my arms, then it was a naïve child’s thought to think it even remotely compared to sleeping with hefty cords hanging on to tubes protruding from the base of my neck. So I was once again wheeled down to the chromatic ice box where the IV team conducted their duty and placed in a twilight state so they could stab at my neck a couple of times. Forget “attached at the hip,” they should use “attached at the neck” instead. It honestly implies a much closer relationship.
Once the medical distractions were out of my way, I was still stuck waiting for my counts to hit that magic number. Not much was available to me to pass the time besides the few activities I had already grown tired of, but I did venture out of both my room and my comfort zone to attend a snow cone party held for the children of the Bloomberg building. There’s not much that can be done at a party full of guests in the “under ten” crowd, so I got my snow cone and got the hell out of there (it was a close one though, I almost had to speak to people).
My biggest disappointment came at the holidays.
For as long as I can remember, the Fourth of July has always been a holiday which I look forward to because of the festivities. When I was a little girl, we would go to my Uncle’s house and I would get to see family (and, at the time, my only female cousins) that I wouldn’t normally see the rest of the year at a big cookout. As I got older and family got busy, we started going to a cookout at the pool where I now work every summer. I always looked forward to this tradition because I was able to see my “summer friends” who went to other schools, and we had fun running around the golf course until dark and watching the private firework show over the Susquehanna River.
Then cancer happened.
Of course, my immune system wouldn’t cooperate with me and boost my numbers in time for the Fourth of July, so I was stuck on 11 South for the holiday. Luckily, my family turned it into a whole big thing and my cousins came and brought food. So, even though I had to give a click or two on the pain pump in order to eat (I say this like it’s a bad thing), I had an enjoyable time. My godmother and her family came in time for the fireworks, and so we all sat in the sitting area, along with the other patients, and looked out at the fireworks going off over the harbor. I will admit that it was nice to be so high up to watch out over the harbor because you could see multiple firework shows going off at once at various locations, but it was kind of hard to watch behind a bunch of Cheetos.
Back when the Bloomberg building was built, the guy who designed it apparently wanted the building to look like a snow globe from the outside. So every single window is covered in white, confetti-shaped decals (but honestly they look like cheese curls) on both sides, making it extremely difficult to see the outside world. Which, I guess is like being in a snow globe, but it’s still annoying as hell.
So that’s how I ended my first round at Johns Hopkins Hospital: staring out a cheetos-covered window after a few weeks of risky medical procedures. My first holiday of the year 1 A.C. (After Cancer) in the books and countless more to go. But if I thought waiting to leave was the hardest part then somebody better call Nurse Ratched because clearly I was going insane.