My first Chemo Chronicle, “And So It Begins,” detailed the very first day of chemotherapy, which I have now labeled “a long day” of chemo. My chemo is set up in 21-day cycles. I have 5 long days (which span 3-6 hours) in the first week, and 2 short days (which are less than an hour each) during the following two weeks. Here’s a look at a typical short day from Wednesday, January 8.
Prepping for chemotherapy
7 am: Waking up in the morning, Gotta be fresh, gotta go downstairs, Gotta have my bowl, gotta have cereal. These words from the eloquent musician Rebecca Black summarize the start to the day. However, my breakfast generally consists of a banana (to boost potassium), Activia yogurt (to help digestive health), and a bagel (I just like bagels).
7:45 am: I begin to make pizza dough for dinner. I don’t always have a lot of energy, but cooking is one of my passions so on “good days,” I take advantage of my good days and try to prep something for dinner. It also gives my mom and Mal a break from pampering me. Pizza dough is perfect on a short chemo day — it’s relatively easy, I like making it, and most of the time is spent letting it rise. This particular day, I made mashed potato-based dough.
9:15 am: I apply numbing cream to my port and cover it with plastic wrap.
9:20 am: I brush my teeth and swish with a baking soda/salt water mix. This is to prevent mouth sores from growing. I hated doing this at first, but I haven’t developed any mouth sores yet. Yes, Mom, you may say, “I told you so.”
10 am: My mom and I get in her van to drive to chemo.
Time for chemotherapy!
10:30 am: We arrive at the clinic. I check in with Clyde, the awesome male receptionist. Clyde is also bald, but his hairstyle is by choice, unlike mine. He gave me some advice when my hair started falling out and always has a smile on his face. With his trademark smile, he directs me to the chemo waiting area, where I’m called in a few minutes later.
10:35 am: After getting my weight measured (which fluctuates a few pounds here and there, depending on my previous day’s eating/drinking), Nurse Jenn accesses my port. This is quite a process. First, she removes my plastic wrap and cleans the area with sterile sponge sticks. Then she sprays more numbing spray on the area. She hooks up a syringe to the needle and flushes it to get liquid flowing through it before it’s stuck into me. The actual penetration doesn’t really hurt; I’m just aware of a dull sensation when it goes in. Some days, the needle does hurt if the spray wasn’t effective, but today, I don’t feel much. She squeezes the syringe in and out to see if it was inserted correctly. If so, blood should come out on the pull back of the syringe. An “out port” is attached to the other end and vials of blood are filled to be taken to the lab to be tested for my levels. At this point, I think enough blood has been drawn for a second Justin to be filled up.
10:40 am: I’m asked for my most recent side effects, such as nausea (at this point, I hadn’t vomited… but that was soon to change), trouble sleeping, lack of hunger, or any general malady. Some days I have a lot to report, some days I have few side effects. Today, I reported that I wasn’t in the mood to drink many liquids last night and my stomach felt “weird.” My temperature and blood pressure are taken.
10:45 am: I begin writing back to my students, as I do every day. They have a designated time to write to me around 12:30 and I need to get back to them before then. (On days where my focus is strong, it takes about an hour and a half to write all 28 students back. Sometimes, it takes longer.) We talk about their day, how I’m feeling, their vacation, and any questions they have for me. It’s a good way for me to stay connected to the classroom, even though my return date isn’t set yet. Some days, kids try to sneak on early to “catch me” in the act. Why aren’t you working on your math stations, Andrew?!
10:50 am: My labs come back and I am told the results. On a perfect day, my white cells are above the 1.0 threshold and all my levels are where they need to be. There has literally never been a day yet where everything is fine. My bilirubin, potassium, sodium, and some other random levels have been low or high throughout. As I shared before, my white cells were really low for ten days, but they have been fine so far in round two. Two days after this particular visit, I got neupogen shots (white blood cell growth factors) to help deter this from happening. Cold liquid was injected into my upper arm — ouch.
11 am: My bleomycin arrives and is hooked up to me. “Bleo” is the only chemo med I get on short days, and it doesn’t seem to give me many physical side effects. It might be responsible for my hair loss and/or diminished white counts, but the doctors can’t specifically pin it on any of the drugs. I also take a anti-nausea pill in addition to an anti-nausea patch I wear on my arm during weeks two and three.
11:13 am: My machine beeps and says that I am finished. I know this is a lie because bleo takes sixteen minutes. Silly machine, trying to be a human and rush through things.
11:16 am: Now the bleo is actually done. Jenn detaches me from the machine, flushes my lines (which gives me a faint metallic taste in my mouth), and pulls the needle out of my port. Truthfully, I don’t feel that at all. She applies a band-aid and sends me on my merry way.
11:30 am: My mom and I stop for lunch at an Italian place nearby. We both had Italian burritos (most people call these strombolis). My appetite is usually biggest at lunchtime, so I try to eat something I am craving and that will fill me up.
12:30 pm: We arrive back at home. Generally, even though bleo doesn’t make me feel too sick or anything, I prefer to lay down when I get home, just to rest proactively. This is a fancy way of saying I like to take naps, but now it’s justified.
Running errands and meeting with my urologist
2 pm: On this particular day, I have a follow up with Dr. Dumont (my urologist who did the surgery) to check on the healing progress of my incision and to receive another screening of my remaining testicle. I want a soft pretzel from the mall, so we leave at 2 to stop there first.
3 pm: After examining my scar and my remaining testicle (it had been a while since a medical professional had examined him), Dr. Dumont says everything is progressing nicely from his perspective. He wants another follow-up after chemo is completed and my next scans come back, sometime in early March. He reiterates that I needed to continue checking myself, because my other testicle can still develop cancer. Going forward, once this is all over, I will need to do frequent follow ups with him or Dr. Maurer (my oncologist) for the next five years. We shake hands (after he washes them), and my mom and I head home.
Evening time as a testicular cancer chemotherapy patient
3:45 pm: When we arrive home, I begin preheating the oven and pizza stone (I like it really hot for pizza) and resume resting while watching The Dark Knight. I forgot how good this movie is — Rachel subplot excluded. I personally prefer the Ben Affleck Batman, though.
5 pm: Mallory arrives home, and I began putting the pizzas together. I chose to make one classic cheese and one barbeque chicken pizza. After we finish eating, I decide to leave the dishes for my mom and Mallory to clean up. It just felt right. Can’t totally pamper them today.
6 pm: After dinner, I finish watching The Dark Knight. (I would follow it with Batman v Superman the following evening to get my Batfleck fix.) When the movie was over, I switched to watching food challenges on YouTube. Exciting stuff, I know. I also spend this time updating the ABSOT Instagram page, responding to comments on it and the blog, and responding to emails I get from all over the world. My evenings are generally spent doing this sort of stuff (watching TV, playing video games, browsing the Internet, or any other number of things I tell my students not to spend their evenings doing) while resting. Truth be told, on most days, I don’t have the energy or the concentration to do much by the time evening rolls around. I would like to curl up with a book, but I have severe headaches some nights and usually can’t hold a good stream of thought. Writing does seem to help keep my brain sharp, though. It may take longer than I’m used to, but it is a good outlet for processing what has happened to me.
8:45 pm: I begin bedtime procedures. This is much more intensive than waking up. I take anywhere from 6-12 pills for various functions (raising levels of different nutrients, staving off nausea, preventing infections, proactively stopping other side effects, sleep aids, etc) and do another mouth rinse. I brush my teeth and get into bed.
9 pm: Ambien takes effect, and I am out for the remainder of the night. That’s right — some of my students have later bedtimes than me.
I’m currently undergoing chemotherapy to cure my cancer. Each Monday, I’ll post my thoughts on this experience. These may be reflections on my prior week’s treatments, musings about my newly-altered life, or anything else that comes into my “chemo brain.” Follow along with all of my posts here.
This post originally appeared on A Ballsy Sense of Tumor. It is republished with permission.