Chemo 101
After about a month of healing at home under the care of my family, I was “ready” to begin the next stage of my treatments: chemotherapy. I drastically underestimated the horrors I had coming. The first round hit me blindsided; I could have never imagined what was coming. Over a span of eight months, I gradually learned to maneuver with high quantities of methotrexate, doxorubicin, and cisplatin in my bloodstream, but that first time really felt like I was dying.
Many people ask me what chemo was like, so I’m going to summarize a typical trip to Children’s Hospital for a round of chemo. Eventually, I got into a scheduled rhythm: on the Monday I’d be scheduled to come in at one, so we would leave at eleven. This allowed me to get one last nice sleep in my own bed at home before going in. I’d wake up to either Mom or Dad, depending on whose turn it was, as they seemed to equally alternate. Then I would gather some books and the clothes Dad always packed for me. It’s hard to pack for five days of chemo; your mind imagines what your tortured self would use, so I’d pack up certain books, movies, and video games depending on my current interest swing. Alas, once those poisons hit my bloodstream, the desire to engage in much was usually devastated. So, on the trip to the ‘burgh, I’d usually lean back and throw in the head phones, usually falling asleep. Often I’d wake in the familiar parking garage, make my way to the grape elevators from where Dad parked or the other door from where Mom parked. From there, I’d show my face at the registration desk to receive a name tag—probably with a smiley face on it. After getting by the security guard, I’d crumble the name tag into my pocket and make my way up to the oncology floor to sign in. While freezing my balls off in the waiting room, I’d fill out the same checklist, usually with a blind line through the “no” section, my way of saying, “Get that shit out of my face. No, I did not fall, whatever beef I have, I can bring it up with doc.” Eventually, my little buzzer went off and they’d take me back, check my vitals, and put me in a room to wait to have my labs drawn. After that, I’d talk with the oncologist then wait for my labs to come back so they could admit me to the hospital. I always said it was like waiting in line for a kick in the nuts. Then I’d finally go to my assigned room and wait on George (my IV pole). George was my chains, my restrictor, but George was also my savior. You see, the quicker George was connected to my chest, means the quicker fluids began circulating, chemo starts flowing, my body gets hydration to clear the chemicals, and the quicker I ultimately go home and prepare for the next round. The quicker I finish each round, which starts with George, the quicker I move past all this pain and back on with my life. So George is a gem, but he sure did suck. So when you’re in bed, you’re dead, unless you feel like unplugging George, winding up the cords, then pushing him around, you’re going nowhere. Being the spark plug that I am, that was difficult—being grounded. George progressively restricted me to my bed except to puke (hopefully) and to eat (sometimes), also to defecate and shower maybe once per stay. I certainly learned to deal with George, as an extension of my self to deal with. In time, I got comfortable with George, I’d take him to stroll the halls for shits and gigs and even bringing him outside on the sun deck to practice the guitar in the spring sunshine. I used to joke with the nurses that I was gonna hit the town one night—just disappear on them, IV pole and all.
I’d fill my time accordingly until either I did my minimum time for the Cisplatin treatments or until my levels were in the required zone for the Methotrexate. There was always anxiety during the four hour wait for the levels to return deciding whether I could go home or not. Anyhow, eventually I was freed to gather my things and hop in Mom or Dad’s car after a painful crawl-walk to the car. (With the methotrexate, I’d always—except one time when I had to take a wheelchair because it hurt way too bad to walk—be a tough guy and walk out instead of taking the wheelchair. This trip was often made at night with freshly developing sores. Regardless, I’d always have a bowl of Craft Mac n’ Cheese, and melt into my recliner, smitten by the comfort of home.
It comes down to the fact that chemo, for me, was somewhat of a game at times with all the strategies I implemented, and some spewing can be avoided by some peppermint or a bite of a pretzel, any of my arsenal of tricks to reverse that gangly feeling you get in your esophagus when you know you are about to vomit unless you do something about it. These tricks become clutch in terms of maintaining hydration levels if vomiting can be avoided.
With a constant demand of certain things, materials were needed for efforts against nausea; the packing of this stuff becomes an important part of the routine. For example, in Texas, it was important that on every trip to the hospital, we had to have Green tea bags, peppermints, tissues, trail mix, and painkillers all included in the bag to bring along. By the end of my treatments in Pittsburgh, I was a chemo boss. I’d stroll into that place and the nurses would already have my weapons ready for me. A laptop, a foam mattress cover, disposable silver wear, and marinol were always a must. I’m not high maintenance; I know my body and how to maneuver with large amounts of cisplatin and methotrexate in my bloodstream. A lot of it worked like this: first time in for chemo, I learned I could order food. To my room. For free. And it’s good! So after eating way too much mac n’ cheese, I got the first chemo and proceeded to get stupid sick. Then I got sick at the thought of hospital cafeteria mac n’ cheese. After a few more similar instances, all hospital food fell victim to that same sensory connection to chemo, deeming it absolutely disturbing to my tummy. So with that deal, I had to really figure out what I could keep down. It usually had a lot to do with texture, richness, and after-taste. I really made my money off of Carnation Instant Breakfast, pureed pears, apple toaster stroodles, and the one and only Craft’s Macaroni and Cheese. A crucial supplement that I didn’t learn about until about halfway through my treatments was Marinol—basically THC in pill form. It cut my nausea in at least half; marijuana has a wonderful combatant effect against chemotherapy sickness. I understand hesitations to smoke pot while going through treatment, but I think one ought to at least try Marinol when they’re sick, as it can seriously reduce suffering. While a lot of time my mouth or throat was too sore to be smoking, Marinol was awesome to have around to mollify the nausea. I also highly recommend edible cannabis treats for chemotherapy patients as it serves as a great way to reap the benefits of THC without the harmful effects of smoke.
With all these particulars necessary for my well-being, my nurses did their best to keep me happy; they are such sweethearts. I’m not going to drop any names as there were so many at Children’s, I don’t want to leave anyone out, but for the most part, the nurses really made things easier for me. That oncology unit has an exemplary approach to support people’s happiness within the cancer illness experience.
During the first of my two encounters with Osteosarcoma, come February—about halfway into my chemo regimen—my condition was one of intense attrition. I was barely eating, terribly depressed, and with little hope—very sick in a holistic sense. Then I was introduced to a girl named Emily who was currently studying at Penn State, who had her collegiate years interrupted in a similar way that mine currently was, the year prior. Just to see that Emily had made it back gave me hope that at the time was absent in my life: “What if?” That got me thinking, “Maybe this really is temporary, despite how impotent my future may seem now, it isn’t all that unreasonable that next fall I could be back with all my friends at Thiel.”
I would be interested in accessing my medical records to compare the “before-and-after-meeting-Emily-data.” Just that glimmer of possibility sparked my will to push back against the sickness of body as well as that of the spirit. I began gradually regaining weight and strength, and clearing my chemo levels at a faster rate, thus allowing me to return home to recover and prepare for the next round. By mid-spring my imagination really caught stride; not only did I believe in a return to college, I was planning some big things: I wanted to return to the baseball field and inaugurate a Relay for Life at my college.
