Each day the morning nurse writes on my dry erase board the date, and the number of days until "cell day", which is scheduled for next Wednesday.
Days -7 and -6 were the worst to date. Cyclophosphamide went in at 8:00 PM on Wednesday. Immediately my sinuses felt like I had jumped into a chlorinated pool and had water up my nose. I was amazed at the infusion pump--it had three pumps connected to it, and even more bags hanging over it. Pumps A, B, and C controlled saline, chemo, and something called "mesna", which was meant to protect the bladder from the toxic cyclophosphamide.
Because cyclophosphamide can damage the bladder, I.V. fluids were pushed for 12 hours prior to the infusion, then continued for the next 48 hours after the infusion started. This meant regular trips to the bathroom. No two-hour space of time could go by without a trip to the restroom. If I had been sleeping, a nurse would wake me. I had a goal of 250 ml of output to produce; if I didn't reach the 250 ml goal, they'd push even more I.V. fluids.
The nurses never had to wake me to use the restroom; my bladder did that for me. My initial surgery, back in September of 2013 had rendered my bladder 20% smaller (the primary tumor had attached itself to the top of the bladder), and so my trips to the restroom happened every 90 minutes or so. Production wasn't an issue, either. I was regularly exceeding the goal amount by double, or more...for two days straight.
The reason for the renogram I had earlier was now abundantly clear. 48 hours of bathroom visits every ninety minutes comes to 32 trips! There was no sleeping. I was a zombie.
The second day of infusion was more difficult than the first. Nausea set in and made eating impossible. I threw up three times during the second night of infusion. I don't remember much about this time because I was so sleep-deprived. I wasn't in any pain. I remember that the gunk I vomited looked just as I had imagined toxic waste to look.
On Friday at 8:00 PM they considered me to be cyclophosphamide-free, and stopped the extra infusions. No more visiting the restroom every ninety minutes--sweet relief. A new chemo drug would be infused over the next five days. This one takes only 20 minutes to infuse, once per day. Its main side effect for me seems to be unrelenting nausea. My recent days have included little more than shower, sleep, try (and fail) to eat, vomit, sleep, etc. etc. I receive anti-nausea meds whenever I request them. I am sleepy but unable to sleep. Nausea sucks the life out of me.
The exit point of the new port, called a Hickman catheter, has to be covered at all times. Normally they'd use a transparent dressing that can last up to a week before needing to be replaced, but I'm too sensitive to the adhesive. Instead, I've got an opaque dressing that must be changed daily. When the nurses remove it, it's the best part of the day. I am so, so itchy where the dressing is. It drives me to distraction!
I haven't left my room for the past two days. I am too sleepy, and too nauseated. A priest visits once each day to offer Holy Communion. I have been refusing since the nausea set in. He offers a blessing instead.
Dr. Rosenberg and his accompanying entourage came into my room during one of the past few days (can't remember which). He said that they're all very excited about my cells. "We'll learn a lot from your case, and it will likely do you some good, too!" Apparently I'm the first patient on the trial whose TIL reacted against a KRAS mutation. This gene is known to be involved in many G.I. cancers, and is considered a "driver mutation", which I think means that it is responsible for further mutations. I am exceedingly hopeful that great good will come of this.
I am drawing on my friends' prayers heavily. My own prayers are sporadic and confused. I place myself at the Mercy of Christ crucified and unite my sufferings with His. Catholics believe in Redemptive Suffering, and this is what I aspire to while I am here.
Each morning, I put an "x" on the calendar and know that I'm one step closer to being home again, yet I am thankful to have this opportunity for renewed health.
I remind myself constantly that I chose this. I fought frustration, rejection, and others' pessimism to get to this place--this paragon of cutting-edge medical research. Coming here and undergoing this treatment was what I asked for (what I prayed fervently for!), and my prayers were answered in the affirmative. I am here. My confinement and discomfort is temporary, and necessary. I am being well-cared for...but it is not easy. I try to not complain, even to myself.