February and March were major recovery months. Months prior, a combination of radiation and chemotherapy started the treatment process, shrinking the tumor to a more operable size. Next, I had survived surgery in which the doctor removed a tumor and diseased lymph nodes. The wear and tear on the body was adding up and it was evident the system was functioning much differently prior to surgery. Although frustrating, I had to remind myself that time was the only answer. Time heals all wounds, right? That’s what I was hoping for in February and March of 2018 as I recovered from surgery. Days turned into nights as time began to stand still and seamlessly blend all aspects of life into one. As I recovered, I had the same routine. Wake up early due to pain, roll out of bed, lay on the couch, walk down the street, lay back on the couch, attempt a second walk, back to the couch, ingest some food, back to the couch, try dinner, back to the couch, then to bed where I would toss and turn throughout the evening, accumulating minimal sleep. Put that routine on repeat for 2 months and it gets pretty old pretty damn quick. I felt as if I was wandering through life in slow motion, as every individual around me continued to move in a time-lapse type speed. After four weeks I was going stir crazy and worst of all- questioning the legitimacy of my body. I was still in serious pain and recovering from the surgery- would my body ever recover? Thankfully, I had family staying with me for stints at a time, reminding me to take things slow and give it time. This wasn’t a terrible philosophy, although the next round of treatments was rapidly approaching. In early April, I would start intravenous chemotherapy.
The IV chemo is the intimidating stuff. This is the junk you see in the movies- people hooked up to machines; bald, frail, wasting away as a bag of bones knocking on death’s door. Naturally, I was intimidated going into this next phase. I had many discussions with my oncologist and learned quite a bit about my regimen of chemotherapy. I’d be on a combination of a chemotherapy called 5-Fluorouracil (5-FU) and a vitamin named Leucovorin. In order to receive the chemo, my oncologist suggested having a PICC line installed. A peripherally inserted central catheter (PICC) is a long line that is inserted into the largest vein in your left or right arm. The line then floats along the vein/blood stream, carrying itself all the way to the heart, allowing the medicine to be dumped directly into the body’s blood pumping machine. The line is able to stay in place for months at a time, although it does require intense care and management (daily flushing of the line and weekly cleaning by a nurse).
As we prepared for chemotherapy, I was most curious about the side effects. The good news was, I’d likely keep my hair (let’s be real people, we all know that my hair is my bread n’ butter). Apparently, certain chemotherapies have been developed/advanced to the point in which they are able to control some side effects such as hair loss. This was a positive sign, despite this drug combination coming with other side effects that weren’t pleasant. The chemo came with the typical stuff- fatigue, nausea, upset stomach, headaches, weight loss, and neuropathy (damage to the nerves, specifically in your fingers and toes which would result in numbness or a tingling sensation, sometimes permanent). My doctors alerted me of another odd side effect- heightened sensitivity to cold/hot products. I was warned by the nurse and doctor that when cycling on 5-FU, I wouldn’t be able to handle anything cold/hot, mainly beverages. This would continue for the 48 hours of cycling, and likely roll into the following 4-7 days. Initially, I thought these people were full of it, but I learned my lesson real quick- about 20 seconds into my first infusion.
I had gotten my PICC line installed the week before, a relatively simple procedure. A specially trained nurse basically makes an incision on the left or right inside part of the bicep, inserts the end of the line, allowing the vein/blood flow to do the rest, carrying the line to the proper spot near the heart (followed by an x-ray to ensure the correct placement). Just days later, I’d be starting my first attempt at chemotherapy. It was a relatively grueling schedule. I’d start at the Kaiser Facility with a certain cocktail of meds on a Thursday afternoon. These would take about 3 hours to cycle. After, the nurse would set me up with a gravity operated “pump”, which contained the rest of the medicine. The pump was nice because I was able to leave the facility and go home for the remainder of treatments. The pump wasn’t nice because it cycled for 45 hours until empty; resulting in a total time of 48 straight hours of heavy chemotherapy. After the medicine was administered, it was my job to unhook and dispose of properly, needing to be returned the following week at my PICC cleaning. I would continue this routine every other week for a total of 8 treatments (4 months of this routine).
Going into my first round of chemotherapy, my attitude had changed. I didn’t find myself as motivated or eager to take on the treatments. It was more of a, “let’s get this over with” type feeling. I was tired, irritated, stir crazy and anxious. Life seemed to be passing me by as I went through my lame routine. It became evident that I was simply, “going through the motions”. Eventually, early April rolled around and it was time to get started on the heavy stuff. I’ll never forget my first infusion visit. I decided to take it on solo, so I had one of my roommates drop me off at the Kaiser facility (luckily, it was located in San Marcos, only about 20 minutes from Oceanside). I would go in, get hooked up, infuse for about 3 hours, set up the pump and be off, free to do as I pleased. It seemed easy enough.
The nurse was a real sweet woman, an older gal with kind eyes. She set me up in the chair and began her spiel about the drugs, expectations, side effects, infusion time- all the necessary details. After flushing the veins, she obtained the chemotherapy. I was surprised when she busted it out- it was a standard IV bag, but covered in a special dark brown plastic in an effort to prevent sunlight from penetrating the bag (apparantely sunlight + drugs wasn’t a good mix). Not only that, but she was geared up in personal protective equipment, just to handle the stuff! I’m talking about face mask/shield, long gown, and extra thick gloves. Here I am, about to have that stuff shot into my body, while she’s wearing full body armor just to handle it… What a paradox.
She hooked the medicine up to my PICC line and said to me, “Now remember, nothing cold or hot!”. I nodded, smiled, and said, “Sure thing!”; all while I subtly rolled my eyes, thinking, “No fucking way”. I picked up my cup of water which was slightly colder than room temperature and took a swig. The nanosecond in which that water touched my lips, tongue, and throat, I knew she wasn’t kidding. I immediately spit out the water as it felt like I had drank a bottle of acid or ingested a fireball. I began a coughing fit, attempting to get my breathing under control as the liquid burned my esophagus while passing through the stomach. This was literally 20 seconds into the infusion, maybe even less! In that short amount of time, after receiving just a few drops of chemotherapy, my whole body and CNS had changed. The extreme nature of that scenario is something that will stay in my head forever. From that point on, I could only drink beverages that were at room temperature. In fact, I wasn’t able to physically hold a cold or hot glass, as the burning sensation would develop within seconds in my fingers and hands. Out of all the side effects, this was likely the most bizarre and peculiar one.
I completed infusion at Kaiser and got hooked up with my pump. 3 hours down, 45 to go; I was feeling pretty good. I waited for my roommate to pick me up and was excited to get home as I had a lunch day planned with a coworker. She came by and we walked to the ocean to grab a sandwich and cup of coffee from one of the local spots. We chatted, asked the ocean questions, letting the calm sounds and ocean breeze wash over us; it was a cleansing moment- the ocean always seems to provide me with some sort of relief.
We began our walk back when I noticed a slight change in my body. It was as if my body was giving me a warning, blaring the danger/high alert sirens. I couldn’t quite tell what it was, but something wasn’t right. As we got closer to home, my friend looked at me and expressed that I, “didn’t look so good”. Upon our arrival to Nevada House, we said our goodbyes and I went back to my usual spot on the couch. As I lay there, I could feel the effects of the drug taking over. I was being poisoned, and with each drop of chemo, my body seemed to be revolting against it. Soon, the room began to swirl and my head grew heavy. I started getting the watery mouth (intense saliva buildup, a telltale sign that I was going to vomit) and stumbled to my bathroom. Seconds later, my head was in the toilet as I violently started throwing up the remnants in my stomach.
My body was working overtime and had no idea what had hit me- I began sweating, burning up, then freezing my ass off as I had no regulation over any aspect of the bod. I couldn’t leave the bathroom because I couldn’t stop yakking. Soon, my roommate Z had come home and stepped in as primary care taker. He set me up with a trashbag/bin (he even put potpourri underneath the lining to provide a nice ocean scent), liquids in an effort to keep me hydrated, towels to wipe off the constant sweating, and blankets for when I was cold. At this point, I wasn’t even in bed, simply laying on the floor in agony. Even when I thought I got everything out, my body was still attempting to rid itself of the toxic drug, as I crumbled on all fours with my head in the trash can, dry heaving over and over again. This lasted for over 8 hours and was likely some of the most miserable hours of my life. I’ll never forget Z and his kindness. Of course, he’ll say he didn’t do much, just hooked me up with trash can; but even his presence, just sitting in my room as I battled through each drop of chemotherapy, was reassuring and calming to me. He didn’t say a word, and he didn’t have to, simply being there was enough.
Friday morning had rolled around and I was more stable. I had finally stopped vomiting/dry heaving, although I was extremely weak and horribly dehydrated. Z came to my aid, providing water and gatorade (room temp, of course), as I had another 24 hours of the pump cycling. I was feeling more normal, although I was fearful of being attacked by another stint of sickness. Would my body continue to rebel against the drugs? Time would tell…
24 hours later I was laying in bed and my alarm finally went off. I was ecstatic- that alarm meant it was time to unhook the pump. The second it began chirping at me, I gathered all my strength, mustered myself up into the bathroom and unhooked that torture. As I placed the pump in the proper disposal bag, “Good riddance”, I said. I had made it. 48 straight hours of chemotherapy. I was relieved, and at the same time terrified- could I really do this every two weeks for four months? I couldn’t stand the idea of having to endure that physical misery every other week, so my next visit with my doctor, I laid it all out there for him. I told him everything that I had experienced. He wasn’t surprised, after all, I was on an extremely toxic drug, literally poisoning my body and killing cell after cell- both healthy and cancerous. My doc prescribed me two medications to help combat the side effects. Upon further research, I learned that these meds were typically used to treat people with severe schizophrenia. Initially, I didn’t understand the correlation. How could a drug that treats mental illness somehow help me with my chemotherapy side effects? It didn’t make much sense to me until 2 weeks later when I had my second infusion.
Prior to starting infusion, the nurses and doctors front load you with medicine to help control the side effects. They inject anti-nausea meds into the PICC, these meds are supposed to last for 48-72 hours, although it was clear that they weren’t enough for me. As mentioned before, my doctor decided to write me some ‘scripts for more medication to combat the side effects. I received two bottles of pills, one was a typical anti-nausea med, while the other was the heavier stuff used to treat schizophrenia. This bottle only had three pills in it, one for each day of cycling (Thursday, Friday, Saturday). The medication, coupled with all of the others, was supposed to eliminate any severe side effects such as vomiting or burning up. I took both pills prior to heading to Kaiser and upon arrival, I could feel an odd difference in my overall perspective. It was as if someone else was controlling my body, I was simply a puppet being strung along the facility. The medication put me in a completely different realm, almost a “zombie” like state. I was a drooling robot, conforming to any command given with no independent thought. I barely remember the second infusion, only waiting to be picked up as I lay on a bench outside the Kaiser facility. When my roommate got there, he immediately noticed a difference in my attitude and outlook.
The next three days were a blur. The positive was that I didn’t get sick! The negative was that I was nonexistent, a shell of a person. Just a sack of cells wandering through the Nevada House in a daze. For three days, I was physically on planet earth, but mentally, I had checked out to an alternate reality. It was an odd trade-off: Either I get violently ill every two weeks, or transition to a zombie state for a Thursday, Friday, Saturday stretch. Pick your poison, right? I was always a fan of killing zombies in video games and hated the misery of being sick, so I would opt to take the medication every other week- knowing I’d be spending 3 days outside of my mind. Upon heavy reflection and even to this day, I am still amazed at how all of those drugs combined to impact my body and state of mind.
I continued the chemotherapy routine for four months. I suppose things got easier as they went on- mainly because I became more and more motivated at the thought of being done with this dance. During that time, I wasn’t working and couldn’t do a whole lot as the infusions would take quite a bit out of me. After cycling for a few days, I would usually need another 3-4 to get my strength back and back on my feet. By that time, we were already halfway into the following week, leaving me about 7 days to be somewhat normal. In between, I would have my PICC cleaned regularly, sprinkled with the occasional doctor’s appointment.
In late July, my final infusion visit rolled around. I would like to say it was memorable- but it wasn’t. I don’t remember much from these weekends as the medications put me into that foggy state. I do remember sporting my “California Kid” sweatshirt, and wearing it with pride. Days later, unhooking the pump was another victory. I had finished my treatments and completed the “gold standard” of colorectal cancer care. After some bloodwork and scans, my oncologist and team were pleased with the results. All that was left to do was to conduct a minor surgery to work on some internal plumbing, and that’d be it! In theory, I was cancer free! I just needed to wait for my surgery date, which would be about (you guessed it!), 6-8 weeks after chemo- gotta give the bod time to recover. I was thrilled, finally- the end was in sight. 9 months of battling and I saw the finish line; however, with time, I would learn a valuable lesson- the unexpected descends like chaos and cancer doesn’t give a hoot about your expectations, dreams, or desires. In this world, there is no such thing as normalcy, and complacency is the true enemy. Once complacency settles in, life has a way of kicking you in the teeth; I’d learn that the hard way just months down the line.
