The side effects begin

Chemotherapy has come a long way over the years. The well-known side effects are still present, although the percentage of patients experiencing them is dramatically reduced. Everybody gets some, but nobody gets all. I also need to account for the research study drug I'm testing in side-effect assessment. Fortunately, my side effects lessened considerably by 5 or 6 days after treatment.

On Wednesday, my first full day with the pump, I took the compost out to the bin and when I grabbed the latch to open the bin, the metal burned my fingers. Neuropathy, in chemotherapy, is a sensitivity to cold in your hands, feet and mouth. It's very painful and followed by a strong tingling in the affected area. I wear gloves when I leave the house or take anything out of the fridge or freezer. I can't wash with or drink cold water. I wear fluffy socks to bed or my feet get so cold I can't sleep. I have to wear slippers in the house or the tile burns my feet. I haven't played "the floor is lava" since I was a kid. *hears a whisper* "Everything is lava, buddy."

The fatigue is interesting. When you pump your body full of poison it triggers your fight or flight response, making me feel like I need to go for a jog. So I'm amped up while simultaneously feeling a giant hand holding me down. This fatigue is less about sleepiness and more about difficulty moving my body. Dealing with that all day generally puts me to sleep by about 4 pm. At around six, I wake up and carry on with the day until midnight or later. It's hard to calm my brain at night, something new for me. Staying up late isn't, because I love those quiet hours, but before chemo I could fall asleep when ready. No insomnia.

 I never struggled with headaches or had a migraine, until the cancer diagnosis. Maybe it's the emotional strain, maybe it's my body telling me something is wrong, maybe it's a secret (DLT)... but my cancer headache is now two and a half months old and counting.

The side effect most commonly associated with chemotherapy is nausea. I've been prescribed medication to combat it so I'm ready the moment it hits. It hasn't hit. There were a couple days when I felt queasy, but nothing approaching nausea.

Enter acid reflux. I have no lack of appetite (another possible side effect) but the acid reflux hit me pretty hard two days after the FOLFOX infusion. I'm hungry when I should be, food tastes okay, but it feels like I'm feeding a volcano. I'm no stranger to acid reflux but this is next level. On Saturday, I tried eating some beans from earlier in the week, nothing major; kidney beans, garlic, diced tomatoes, cumin, salt... you get the picture. It was like swallowing lava (a theme?). I'd never experienced anything like this. I'll have to change up my diet for the next infusion.

Participating in the research study has its benefits. I get the added treatment drug, additional personal care, scans and medications free of charge. This particular drug has some overlapping side effects with chemotherapy, with the additional possibility of fast heart rate and skin ailments. Skin troubles just recently hit--pain, redness, rash and acne. I didn't even have acne as a teenager. Have I said "next level" regarding a side effect? Yes, yes I have. I think my camera is trying to color-correct the redness out of my face.

I'm scheduled for my second infusion on Monday, February 24th. We'll see if things remain consistent, improve, or more likely, have a cumulative effect. Anything is possible, according to my doctors and the personal experiences of others.

Starting chemotherapy

I was fully recovered from surgery by the middle of January (about 6 weeks), had my access port installed in my chest (December 26th), and basically had a vacation from cancer for a month. 

I felt great, no pain, no symptoms. If not for the MRI, CT and PET scans, I wouldn't even know I was sick. I finished up some projects at home, my daughter, Rowan, visited from Seattle (the boys loooooved this), and I went through a stack of paperwork about the upcoming meds. Lauren and I also spent this time preparing the boys for what was to come. The children's book My Dad and the Dragon has been a great resource to help them understand what life could look like during cancer treatment.

I qualified for the research study that involves a new drug that could reduce tumor size in colon cancer. Another tidbit I learned; mine is colon cancer. It doesn't matter that my colon is now clean and my liver has it... still colon cancer. The study drug had already gone through testing for esophageal, neck and head cancer, so it's not a blind study; I will be getting the actual drug (no placebos) in addition to my FOLFOX chemotherapy. This means I had an additional infusion day to start things off. 

Monday, February 10th I was in clinic at Utah Cancer Specialists for 10 hours getting my first study drug infusion. I was there when they opened and when they closed. On Tuesday, February 11th, I got my first chemo infusion. This felt like a pretty short day at 4 hours. They finished up, attached an additional bag, a pump, and sent me home for 2 more days of chemo infusion. This means that the pump is running chemotherapy meds through my port every 55 seconds for 48 hours. Once the bag is empty I go back into the clinic to get everything removed and I'm free from drugs until the next infusion day. 

Fortunately, moving forward, the study drug and chemo infusions can happen together. This means my infusion days will be 6 hours, once every two weeks.

At home the pump and chemo bag live in a fanny pack with a tube running to the port in my chest. I was running around, tidying up, folding laundry when the pump began a long sustained beeeeep. This was about 30 minutes before the clinic closed for the day, so I dropped the boys at the next door neighbor's and rushed back to clinic to get the problem solved. 

Our next door neighbors, Adam and Amanda, have two kids, Jack and Isla, that are really close in age to Emmett and Felix. It's been amazing having natural playmates in such close proximity; we even put a gate in the backyard fence so they can come and go freely.  They are truly a second family for the boys.

With the pump problem solved and instructions to slow down and take it easy, I just had to wait for the side effects to kick in.

Surgery recovery

I spent the entire month of December recovering from the surgery. According to my surgeon, I had about 10" of my colon removed. It was so heavy that the robot couldn't handle it and she had to reach her whole hand inside me to pull it out. Incidentally, I didn't realize the colon and the large intestine are the same thing. I always thought the colon was the bottom section, or something like that.

My mom stayed with us for a couple weeks right after surgery to help out with the boys, cook meals, clean and offer emotional support. I couldn't use my abdominal muscles at all, but fortunately the personal training I had been doing all year prepared me for this whole situation; my squat game is tight!

On December 19th I mustered the strength to drive with my mother and the boys to St. George (4 hours away) to attend our annual Gowen Family Christmas gathering. I developed I nasty cough on the way and lost my voice, so I had to spend the weekend on my back, silently watching the good times.

A couple CT scans and an MRI confirmed that the cancer had moved to my liver, so the tumor was shipped off for genetic testing. This helps dial in the chemotherapy for a more effective treatment. I'm also being examined for participation with a research study drug.

I met with my oncologist and went over all the aspects of having cancer and preparing for chemotherapy. The prognosis was good, there were only a couple spots on my liver and nothing showing beyond that. This allowed me plenty of time to recover from surgery before jumping into the chemo.

By the end of January I was back to full health and ready to begin chemotherapy treatment on Monday, February 10th.

The hospital visit

The surgery lasted about 4 hours. Shortly after waking up they asked if I needed anything. The only thing that popped into my head was Everything In Its Right Place by Radiohead, from the Kid A album. They put a cellphone on my chest and played the song while preparing me to get moved to my room on the post-op floor. It really put me in a good headspace. I felt okay, and was even able to move myself from the transport bed to my room bed, although things at that time were a bit foggy.

I was in the hospital from Monday December 2nd through Thursday December 5th. I was able to get myself out of bed and walk around the 4th floor for exercise. Kendrick Lamar's album GNX was perfect for this.

Pain management was pretty good (Oxy and Tylenol) but when things got bad, Radiohead's KID A MNESIA was incredibly effective at helping disassociate.

Thursday morning I felt solids shift in my bowels and it sent me on a pain journey that led to several out-of-body experiences lasting about 42 minutes, until the nurse was able to give me a high dose of Oxy. Other than that, the hospital stay was relatively uneventful.

The staff was amazing and the whole experience was overwhelmingly positive.

Diagnosis

November 19, 2024 was the start of the journey no family wants to begin.

I went in for a colonoscopy and we got the news that I had a large, likely malignant, tumor in my colon.

The next day I got a call from the surgeon's office scheduling a consultation the following Tuesday, November 26th. In order to get in for surgery on Monday, December 2nd, I needed a CT scan and insurance approval for the in-patient operation, otherwise I'd have to wait until December 30th. At this point I was in so much pain, I couldn't imagine waiting a month... the thought kinda broke my brain. We had about 10 business hours before the long Thanksgiving weekend to get the CT scan and the go-ahead from our Insurance. Alta View Hospital took care of the scan at noon on the day before Thanksgiving and we got approval at 3:30 the same day. So surgery in 5 days was on the calendar.

We got a call on Saturday, November 30th from the surgeon saying the CT scan showed the cancer had likely spread to my liver. We wouldn't be able to begin chemo until I was fully recovered from surgery, so we had to decide if we wanted to do surgery or see an oncologist first. Due to my good fortune getting surgery lined up for the 2nd, I felt like it was meant to be. We'd save further treatment for next year.

December 2, 2024, I went in for surgery to remove the tumor.