Second verse, same as the first…
Just like the first round of chemo, the waiting while my counts recovered was the most “exciting” part of my time in the hospital. The amount of days that I needed to have a chemo infusion was only five this time, so I started the mutation oral chemo drug earlier than before, which provided plenty of time for my body to get up to its usual “post-chemo” shenanigans.
On the day everything started figuratively going up in flames, I was enjoying a visit with my roommate and her sister. However, our time was abruptly cut short due to the sudden cramping and rumbling in my stomach. At first, I just assumed that I had to go to the bathroom, but the pain kept increasing until I was practically doubled over.
The first of many nights on 11-south where I ended up sitting in bed hugging a Mickey Mouse pillow pet to my stomach until the pain subsided (it’s why he’s so deformed now), my mom and I spent the majority of the night awake. Well, she was awake. I was vomiting and writhing in pain. Good times. At first the doctor’s tests proved to be inconclusive and they didn’t know what was wrong with me, but eventually it was determined that the pain was coming from two abscesses (pockets of pus and grossness) somewhere in my abdomen.
Just how I had pictured July going for me.
For quite sometime, I was teetering on a tightrope. The surgical fellow and interns were all waiting for me to start deteriorating. If I even so much as sneezed, I would be rushed to surgery to try to fix the little pockets of doom. Suddenly, there was no revolving door of doctors. There was no door at all – that would imply that there was knocking involved. The surgical team just took free rein to come and go whenever they felt like it in order to check up on me and press on my very sensitive belly.
(Hey, guess what? My brother turned out to be a half match for a bone marrow transplant!)*
You know how they say a watched pot never boils? Well a watched stomach never bursts either. In fact, pretty much the one time I was left alone to try to get some much-needed sleep (with an upped dose of pain meds for my troubles) my hemoglobin started plummeting. Soon it was at a 3.7 – even lower than the five out of twelve I had experienced when diagnosed – and the surgical fellow came barging in at 4:00 in the morning to exam me. And I swear to you, the way he pressed on my stomach was like he was trying to reach through me to feel the hospital bed I was lying on.
Well gee, doc, my stomach wasn’t hurting ten seconds ago…
Based off of my super low hemoglobin, they determined that I was probably bleeding internally now, so they gave me an infusion of platelets since my own counts were so low to try to clot off the source of the bleeding. If that didn’t work, it was almost guaranteed that I would be going to surgery.
My fingers were crossed. And my toes. And my eyes. And I may have even held my breath.
Luckily, my hemoglobin started rising just in the nick of time, saving me from having to go under the knife again. Which reminds me to mention that I never once saw my actual surgeon during this whole debacle, not even after it was determined that the ruptured abscess had come from the site where he had removed part of my ovary (tsk tsk). So now that I was clotting with the help of someone else’s platelets, I was just left to stay on bed rest until I healed.
*Editor’s Note: Did you catch that part earlier? The one about my brother being a half match for a bone marrow transplant? Yeah, I almost missed it too, that’s how overwhelmed and distracted I was by all that was going on at the time. There were no matches found for me on the National Bone Marrow Registry (which I was warned about), and the marrow drive at Susquehanna didn’t reveal any matches for me from amongst my peers, so my best bet was to go with either one of my parents or my brother who were all half matches. The transplant doctor also informed me that once all of my issues cleared up and my counts improved after this second round I would be heading to the transplant portion of my treatment. But don’t worry, I had plenty of time to process that information while I clotted my way to a healthy abdomen, allowing my body to absorb the free-floating blood naturally. I’m aware how gross that sounds.
Not to be outdone by my blood-filled abdomen, both my hands and my feet started acting up as well. Shortly after the start of my post-surgical drama, I began to develop a rash on the palms of my hands and the bottom of my feet. This rash was a side effect of the oral chemo drug I was taking for my FLT3 mutation which made it pretty painful to walk and even hold things. Although I was on some pretty heavy-duty pain killers for my stomach, the rash was still a problem which needed to be taken care of – mostly because the team decided that I should stop the oral drug to give it a chance to go away on its own, so they were eager for me to start taking the medicine again. In order to speed up the process, I was given a thick steroid cream to rub into my skin. The steroid cream, however, started to really dry out my skin, so I also had to add lotion on top of that.
It became a process: first the cream (which my mom needed to wear latex gloves to apply), then the lotion, and then the whole goopy concoction was covered up with little white gloves and socks so it wouldn’t smear.
They became known around 11-south as my Michael Jackson gloves, although a few nurses also told me that I resembled Minnie Mouse. I had to wear them roughly three times a day for about an hour, and I came to dread the moments when my mom would dig through the drawers for a clean pair. But that’s only because the gloves made it impossible for me to work the touch screen on my iPhone…
The only bright side of this terrible time came when I received an invitation to the hottest social event on the unit: Spiderman’s 4th birthday party! Because I was all bloated due to the blood in my abdomen, I was having trouble maintaining an appetite and forcing down food. Throw chemo-induced mouth sores into the mix and it was a match made in starvation heaven. Nevertheless, I managed to eat a slice of ice cream cake to celebrate the little guy’s birthday (with a couple clicks on my BFF pain pump of course), and it was just about the best damn thing I’d eaten in a long time.
It was also the last thing I would eat for quite some time.