As I prepared to go into the oncology office for chemotherapy on Monday, I had a persistent thought that would have made my oncologist shudder: “Maybe they won’t give me my chemo today…That would be fine with me.”
Now obviously I didn’t mean that. I want to stay on schedule and receive the treatment according to plan, but after the week I had just experienced, I didn’t think that would really be possible. I’d been fighting a low-grade fever for nearly a week, which had become a more real 100+ fever on Saturday. We actually got as far as the emergency room parking lot on Saturday night. My temperature was back around 99 and we calculated that an immediate hospital stay would mean a terribly sleepless night, whereas I could go home to my bed, get a full night of sleep and reassess things if my fever peaked again.
As it turned out, my low-grade fever remained for most of Sunday, but never rose back up to the danger zone. When Monday rolled around, I was positive that my blood work would come back neutropenic and my chemo would be postponed. I was so positive in fact, that I told them NOT to access my port for drawing the blood and asked them to take it out of my arm. Yes, I requested that a needle be put into my vein. Cancer has changed me.
We met with my doc and received the results: my counts were right on the borderline and I was going to get my third chemo dose today! We hammered my oncologist with a ton of questions about all the unfortunate side effects I had been experiencing since I last saw him and we determined that I would stop taking Nexium (I had been getting an hour-long stomach ache each time I took it) and that I would get a new prescription of Allopurinol to potentially help fight the fevers that seemed to show up on schedule in the second week after each chemo treatment. The doc hypothesized that the breakdown of the cancer was causing stuff (not the technical term) to build up in my kidneys, which could relate to the fevers. This medication will rid my kidneys of bad stuff build-up.
With the breakdown of my cancer on his mind, my doc came over and started groping my neck to feel for Lumpy. He pushed a little harder and his face registered surprise at the lack of any major findings. “Wow, that’s really good,” he said. Great! Cancer must be gone! So are we done here?
We are not done here. Theresa and I were shown to our private chemo room, where the nurse prepared my port and started the IV of various fluids and Benadryl. I don’t know why, but my stomach had been feeling a little off throughout this entire visit, and the idea of letting more chemo poison into my body was not exactly helping matters. I started feeling a little bit nauseous not-so-coincidentally right when she started the chemotherapy flowing. There’s one part of the chemotherapy that is actually making me feel a bit nauseous just typing about right now, where the nurse manually injects a tube of bright red fluid into my IV. I imagine it tasting like a disgusting fruit punch or something. This chemo component turns my pee reddish for the next few days and just generally disgusts me. It was hard to get through that part, but I made it. After that, there was one IV bag left to devour, which takes about 45 minutes to an hour. Theresa and I fired up our latest (and highly recommended!) NetFlix jam–Freaks and Geeks–and settled in for the duration of the process.
When I got home, I continued to feel a bit nauseous as well as exhausted. I settled in for a nap and managed to fall asleep for what felt like a long time. I awoke to go to the bathroom and realized I’d only been out for about 20 minutes. Theresa left to go do some crucial grocery shopping and I returned to my bed. I began to experience chills (much like I have when I’m developing a fever), but this time they got a lot worse. My entire body convulsed uncontrollably with each wave of chills. My teeth were chattering and my mind was racing. This was a new side effect for me…and it was terrifying. Theresa’s phone was dead, so I called my Registered Nurse Mom, hoping she would have a quick fix or at least some reassurance that I wasn’t about to have a heart attack and die. She didn’t have any answers, but she did talk me through some breathing exercises to try to relax myself. The chills eventually subsided and I might have even fallen back to sleep. Theresa returned home and I told her of my harrowing half hour. I didn’t really need to describe it in too much detail, however, as I soon had a second chills attack which this time combined with the feeling that I was about to throw up. Thankfully, I did not, and the chills subsided again.
I’ve experienced a lot throughout this process, but I’m going to go out on a limb and say that Monday evening was the absolute lowest point of this whole endeavor. I couldn’t sleep, I couldn’t eat and I had an ever-present nausea and the return of a low-grade fever. I was basically not at all functional. By the grace of God (and no doubt the power of your prayers), at least it didn’t last that long. By later in the evening, Theresa was feeding me bits of saltines and banana, and I was feeling well enough to at least be distracted by Netflix again. The fever broke around 10:30 and I actually slept through the night.
Monday must have been my penance for the week, as I’ve largely felt pretty good ever since. I had one really weird new side effect on Wednesday that I want to note simply for its strangeness. I experienced a phenomenon known as hypnic jerks. No, it’s not a hypnotist with a bad attitude. It’s an involuntary jerking of the body that sometimes occurs right when you are relaxed enough to drift off to sleep. Basically, every time that you’re about to fall asleep, it feels like someone is startling you awake–except it’s your own body that’s doing it to you. I had a hard time sleeping on Tuesday night, so I was pretty tired on Wednesday. I attempted to take a nap at one point and–despite my exhaustion–simply could not fall asleep. Every time I came close, my legs would jerk or my arms would twitch. It was frustrating and also completely beyond my control. I haven’t had to deal with it too much since then, but I am always a little afraid it will return whenever I try to fall asleep now.
The biggest lesson of this week is that chemotherapy is like a box of chocolates. You never know what you’re gonna get, but it’s probably going to be one of those chocolates with the disgusting fruit inside. Every week it seems to be a different disgusting fruit though, and some weeks the aftertaste lingers longer than others. And so I push on, until one day I can finally throw away this box of chocolates and start eating Reese’s peanut butter cups again.
But it’s Friday, it’s currently 63 degrees outside and I’m feeling mostly normal heading into the weekend. What more can I ask for? Theresa and I even took a couple walks this week, which makes spring (and, more importantly, cancer-free summer) seem all the closer.
I also managed to listen to my beloved Chicago Cubs on the radio a couple times and was inspired to bring back my Cubs blog. If you like this blog and you also like the Cubs, check it out. I can’t promise that this blog will be any less miserable than a cancer blog though. It is the Cubs, after all.
Lastly, my brother Chris has decided to shave his head in solidarity with me on Sunday and he is raising money to benefit the St. Baldrick’s Foundation for pediatric cancer research. He managed to meet his fundraising deadline less than 12 hours after posting the link on his Facebook page, but it’s a great cause and you can definitely still donate here if you feel so inclined. My hair actually still hasn’t fallen out and is growing back quite nicely, so I’ll be re-upping on my baldness this weekend as well.
Thanks as always for the tremendous support! So many people reached out to me this week without even knowing what was going on and that always means so much to me. Enjoy the unseasonably warm weekend!