Chemotherapy [kee-moh-ther-uh-pee], the delicate balance between killing cancer, but not the lucky recipient. I was the lucky recipient last week as I underwent my first cycle of FLOFOX chemo. Strap in, because it’s a wild ride.
It’s an unfortunate tribal knowledge we receive growing up, chemo sucks. We hear people discuss the harsh side effects of chemo, but nobody really talks about the whole process. I thought we should start there before we Van Damme into the side effects dungeon.
Infusion day is filled with a lot of activity and unfortunately can last as long as an entire workday. After my wife’s experience in the splash zone, #NeverClean she was all-in for ringside seats at my first chemo infusion. We arrived at the university cancer center at 10:30AM and got checked-in. As we sat there nervously, waiting to be called, I couldn’t help but notice I was the youngest one in the waiting room by at least 20 to 30 years. Then a nurse called my name, time for the first stop on the chemo day tour, the lab. Labs are taken before every infusion to check blood counts (platelets, hemoglobin, red and white blood cell count, liver enzymes, kidney function, etc.) to make sure you are healthy enough to proceed. If these counts are too low, receiving chemo could severely injure or kill you in a lovely variety of painful ways. However, before my labs were drawn, it was time to christen my port for its maiden voyage.
When “accessing a port,” keeping a sterile field is extremely important since it a direct line right to your heart. Assuming my position in the chair, the nurse began gathered her supplies, while I dawned my protective mask and unzipped my newly acquired port access shirt. Once she had her things in place, it was time to pop my ports cherry. Based on our small talk while the nurse was getting things ready, I knew I liked her and that she liked her job, so I was at ease. Then she did something hilariously unexpected, “Before we begin we need just the right music to access your port for the first time. “Ok Google, play O Fortuna!” I started laughing immediately, not only do I love this song, but it set the perfect tone. If you’ve never heard it, click the link above, it is literally the definition of an “epic song.”
With the perfect soundtrack in the background, the nurse held the port firmly in one hand and located the appropriate landmarks with the other; she found the spot. She grasped the long hard needle in her hand, drew back, and counted down from three slowly. I took a long breath anticipating her, then she firmly but caringly entered my bosom with her needle. Is it hot in here and why am I breathing heavily? Once the needle was in my port, she used a syringe with some saline solution to verify she was in place. She was not happy with the result. It turns out, I was still a little bit swollen from the port placement surgery, so she required a larger needle than the usual three-quarter inch one. The maiden voyage with my port was very short, but they usually are anyway. After the one-inch needle was in place, she was happy with the blood return in the syringe, so she flushed it out and fastened it in place with Tegaderm. Once everything was taped down, she took a few vials of blood, flushed my port and sent me on my way to rejoin my wife in the waiting room.
Then we (im)patiently waited to be called back to see my medical oncologist. Like the lab draws, I will meet with my oncologist before every infusion to go over how I tolerated that last session and to address any concerns I may have. Once the oncologist came into the room, we briefly went over any symptoms I was having, and he discussed the anticipated side effects again at a high level. Then he went over the laundry list of medications they were going to send home with me to help with nausea. Since this was my first infusion, we didn’t have much to talk about, so this chat lasted only five minutes. Then it was back to “hurry up and wait” land.
By now, it was 11:30, and my infusion wasn’t scheduled until 12:30. So we checked in at the infusion center to let them know we were ready and then grabbed some lunch. Anticipating many days of ill side effects, I did what any average guy would do, I grabbed a burger. According to man law, I must state for the record, hot dogs were not an option on the menu. After eating as slowly as possible to delay the inevitable, we headed back up to the infusion area. After a short wait, we were notified that my “chemo suite” was ready and were taken back. It was a cozy semi-private room you could close off with a curtain if you wish. It had a chemo chair that reclined and another chair for my chemo buddy.
In some respects, the chemo area reminded me a lot of the maternity ward. They have a whole host of beverages, snacks, and even sliders for patients and their guests. After getting a rundown of the snack situation, we got a briefing on the logistics of how chemo is ordered, dosed, and delivered.
The medical oncologist uses the lab results in combination with my exact weight and side-effects from the previous session to determine precisely what dose of chemo should be given during this session. He then sends the orders to the oncology pharmacy. Once I arrive in the chemo suite, the nurse takes my vitals, to double check what was read earlier. If the nurse is satisfied with the readings, she gives the pharmacy the final go-ahead to mix the chemo. There is a bit of a wait at this point, so I roamed around to familiarize myself with my new bi-weekly retreat.
When the medications were ready, I assumed my position in the chemo chair. The first round of drugs they gave me was not chemotherapy, it was a mix of Zofran and Decadron, two medications to help with nausea. This infusion only took about fifteen minutes, but during this time, my wife’s cousin joined us in the chemo suite. He is a really cool guy, and it awesome to have him join us. Unfortunately, he is all too familiar with the chemo suites at the University, he just wrapped up his chemo sessions in January of this year, but he is doing well after his journey. For me, it was very calming to have someone there who understand exactly the feelings and thoughts you are having, especially during my first infusion.
After I finished my anti-nausea aperitif, it was time for the hard stuff, Oxaliplatin, and Leucovorin. Science time, at a very high level, Oxaliplatin works by killing the rectal cancer cells that are rapidly dividing. It does this by destroying the RNA/DNA that tells the cell how to copy itself, and if the cells can’t divide, they die. Fun fact, Oxaliplatin is classified as an alkylating agent. Can you name another commonly known alkylating agent? I can, MUSTARD GAS! They are killing my ass cancer by pumping my body full a chemical related to mustard gas, holy hell! Ok, now on to Leucovorin, this isn’t actually a chemotherapy drug, but it helps my second chemo drug 5-FU bind better to the cancer cells. It also has the additional benefit of protecting my gut from some of the harsh side effects of the chemo drugs, so I don’t get entirely wrecked by all the chemo. They infuse this at the same time as the Oxaliplatin to give it time to work before giving me the 5-FU which comes after the first two drugs finish infusing.
Once they got me hooked up to the Oxaliplatin and Leucovorin, we had two hours to burn while it slowly dripped in. Given the toxic nature of the stuff being pumped into my body, I expected to feel something right away, but I didn’t. My wife and I packed Bohnanza (aka Beans in our circle), one of our favorite card games, so we challenged her cousin to game, which helped pass the time quickly.
About an hour and a half into the infusion, I began to feel my first side effect, numbness and tingling (neuropathy) in my feet and hands. I told my nurse, and she quickly busted out two hot packs to put under my feet. To my amazement, this immediately made the tingling sensation go away. Thanks to “beans” the last 30 minutes passed quickly, and the first chemo infusion was finished. Then it was time for the second part of the session, which included a syringe full of 5-FU.
Fluorouracil (aka 5-FU) is a chemotherapy drug known as an antimetabolite. Antimetabolites stop cancer cells from making and repairing their DNA, which is needed so they can grow and multiply. If they can’t grow, they die, die, die! The infusion process for 5-FU is quite a bit different than the Oxaliplatin, in that it is infused over a more extended, 46 hour period. Since Oxaliplatin is a powerful cancer-killing beast with close ties to mustard gas, these infusions must take place in the hospital, so they can closely monitor patients for adverse and immediately remedy life threating side effects. 5-FU works by slaughtering cancer during its repair phase, so it isn’t quite as dangerous and can be administered on an outpatient basis. Now, when I say it isn’t quite as dangerous, it’s like equating it to being sent home with a hungry tiger, versus a pissed off honey badger; they will both mess you up, but one is going to take a bit longer to do so.
Ok, back to part two of infusion day… The 5-FU process began with the nurse injection a small amount of the cancer-killing honey badger serum over a two-minute window. After a quick glance to makes sure I didn’t drop dead, it was time to hook up the 5-FU “pump,” which I proudly got to haul around for 46 hours in a fanny pack. I say “pump” because this is unlike any pump I’ve ever seen. Personally, I’d call it a chemo grenade, rather than a pump. This grenade is about the size of a softball and contains a specified amount of 5-FU held in a pressurized plastic bubble. This device is hooked up to my port and uses a unique thermal regulator that is taped to my body to control the flow of the drug into my system. If the sensor gets too hot, it runs a bit quicker, too cold and it runs a bit slower. Anyway, once the nurse taped up all the shut-off valves, to ensure I wouldn’t accidentally stop poisoning, I was free to go.
Since I had numbness and tingling in my fingers and toes, the nurse made sure to send home extra hot packs. Despite the fact it was 90 degrees, she also gave me a heated blanket to protect me from the wind. I was also given a big kit of chemo disconnect supplies for my home care nurse who would be disconnecting my chemo grenade Sunday afternoon at my house. Six hours after I arrived, it was time to throw my chemo murse over my shoulder head for home.
When we got outside, it was immediately apparent why the nurse handed me a blanket. Despite being hot outside, the wind felt like an arctic blast on my fingers. So there I was in the valet line, sweating my balls off, bundled up like it was the middle of the winter; the walking definition of a hot mess. Big blue had been baking in the sun for 6 hours, and it must have been over 100 degrees in there, but I was comfortable because there was no more wind. My truck was quickly becoming its own splash zone, my wife and I were sweating bullets, but I was terrified to turn on the air conditioner because it was going to hurt my hands. My poor wife was roasting to death, so I shut off my vents and turned the AC on expecting to feel pins and needles. It turns out as long as the wind wasn’t blowing directly on my hands or feet I was fine, heat stroke averted.
As we drove home, I was feeling fine, no motion sickness, plenty of energy, healthy appetite, life was good except for my cold-hating extremities. As we drove home, I thought back to the conversation we had with my wife’s cousin. He told us that he had a tradition of going to BWWs after his chemo sessions as a reward for the side effects that hit the days following the infusion. I liked this idea a lot, so I suggested that we go to one of our favorite places to get Fish Fry. (This is a big thing on Fridays where we are from). So off we went to our favorite spot, my wife, chemo grenade, and me. The only change I needed to make to my regular ordering routine is that I had to get a hot tea instead of my usual cold beer. Ice water was out because it feels like trying to swallow a mouth full of un-chewed coconut flakes. How do I know this? I’m a moron, I grabbed my wife’s water and took a swig just to see what it felt like. I ate like a pig in anticipation of the upcoming awfulness, and then we headed home.
So now you’re caught up on day zero of my chemo powered chemical bender, step into the side effects dungeon to hear all about eventful days that followed.