Chemotherapy Anniversary

   February 10th, 2025. My first infusion. It's been a crazy year. I stopped writing because my fingers hurt too bad to type. I considered talk-to-text for a minute but it felt so awkward. They make the captain's log sound so smooth and easy in Star Trek. 

   The pain reached a point where most of the time I just sat on the love seat, elbows on my knees, hands in a prayer position with fingers interlaced, waiting. Just waiting. So. Much. Waiting. I also started losing control, emotionally. I had trouble controlling my temper, my reactions... many days I was a mess. These are the times that will test a caregiver, really push them to their limits. Lauren was taking care of a 3-year-old and two 6 -year-olds, me being the second one.

   By the end of May I was getting more and more unhinged. A CT Scan on May 30th showed my port tube out of place. It had nestled up to my jugular like they were in love. When I showed up for my infusion 2 days later, they said I couldn't safely get my infusion until the port was fixed. I nearly came apart. It took every ounce of the self-control I had left to stop myself from screaming and stomping my feet like a, well, a 6-year-old. 

  I soon had surgery to fix the tube and was only set back a week. It turns out I was only scheduled for two more FOLFOX infusions anyway. 

  The CT scan that showed the port out of place also didn't show any cancer.

   I had my last chemo infusion on June 23rd, skipping the final two. although I kept on with the study drug infusions until August 18th. 

  Another clean scan on July 25th, pretty exciting. I was responding exceptionally well to the treatment. They gave a lot of credit to the study drug. The rapid improvement through May and June was relatively unprecedented.

   So, I've been coming back to life. The fatigue and mood swings went away early in July but were replaced by neuropathy in my hands and feet. Turns out I had been confusing cold sensitivity with neuropathy. My feet healed quickly and once the pain subsided, I noticed the tingling numbness. As my fingers healed, so much slower, I noticed the neuropathy there as well.

   On November 13th I got a migraine. It settled down after a couple hours, but the headache never left. It has hit migraine level a few times, but mostly just hangs out as a level 4 to 6 head pain. My CT scan a week later showed nothing, along with an MRI on December 9th. Still nothing. 

  It's funny that every ache or pain can be a sign of cancer, but when you've had cancer, it's the first thing they check. "Headache huh? Could be cancer. Let's check it out." 

  The question I asked myself: Do I want cancer to be the answer, or do I want to have a mystery headache for the rest of my life? I settled on mystery headache. It's actually reset my pain baseline. It never goes away, but my brain now filters it out for the most part. Oh yeah... it's not cancer. Just another part of my body breaking apart. 

  When my doctor called to tell me the good news, the boys were running through the house playing some combat game and screaming their heads off. He now thinks he discovered the source of my headache. I'm not so sure. Those two have been running and screaming their whole lives and my head has been fine up until now.

  At least, up until chemo, on February 10th, 2025. I'm thrilled to put that year behind me and start the next chapter of my life. 

  Unfortunately, it's chemotherapy again. Starting on the 24th. Yep. The cancer is back. Two spots on my liver. Shit. 

Current status

So, how am I doing? Something I ask myself several times a day. 

I'm okay, but that answer can mean different things based on what week and day of that week it is. I get my chemotherapy and study drug infusions on the first and third Monday of every month... for as many months as I can physically stand it (nobody makes it past 12 infusions in a row). This is how I measure time now, it's either infusion week or pre-infusion week. 

Today is Monday, April 21st and at this moment I'm getting my 6th infusion. Each one gets progressively more difficult; the side effects kick in earlier and last longer. My fingers are now always cracked, bleeding and sore. There are currently three fingers suffering, down from seven, my peak last weekend. For eight days, both hands felt like they had been slammed in a door. 

The fatigue days increase by one with each infusion. The first infusion week I crashed on Thursday. The second infusion week, added Friday. By the fifth infusion week I had to rest at least every two hours before crashing in the midafternoon on Wednesday and continuing until Sunday. Although Sunday didn't have the midafternoon crash.

The fatigue crash often doesn't involve sleep, just laying down, sometimes eyes closed, sometimes not. I always listen to either a podcast or music album so I can tell if I slept and for how long. These are what impacts my day-to-day life most of all.

We were prepared for the fifth infusion week by asking my mom to stay with us from Wednesday-Saturday and my brother Travis and his two boys to stay Friday-Tuesday. This was a huge help getting Lauren through busy season at work. Now that she has "left" the corporate tax world to work for a public accounting firm, she has to care more about the April 15th tax deadline as well as the October 15th corporate deadline. 

It's possible I have six more infusions to go, depending on how much my body can take. When the neuropathy (finger numbness) gets really bad they stop before it does permanent damage. I guess that's why nobody makes it past 12 infusions... so that's good, right? Right? The chemo is working and the study drug appears to be very effective at reducing the size of the spots on my liver. I am making greater progress than was expected, so there's the good news. 

Pre-infusion weeks are spent making up for lost time. I clean and reset the house. Catch up on laundry. Do yard work. Go shopping. These are the things that color my life. Since cancer, everything turned black and white. The daily routine has become color while everything else remains black and white.

I realized this when, despite our best efforts, my wife and I just couldn't feel the Christmas spirit. You'd never know it in the pictures and the boys won't remember it that way but the special occasions have no energy and quickly disappear. Even though we feel like we are going through the motions of celebrating the holidays, it is a good reminder of what is really important these days.  Thanks to the family and friends who help lift our spirits in those moments.  We had a nice Easter, despite not coloring the eggs we hard boiled.

So... how am I doing? There's a light at the end of the tunnel. That's good, but it's one of those lights that doesn't appear to be getting any closer. I know I'm moving towards it but the journey doesn't feel like it's getting any shorter.

I guess I'm doing okay. Well, I'll be doing okay. Soon, I think. 

A nurse gave me this pin today. Nice.

Cancer List Song or: How I Learned To Stop Worrying And Love GoFundMe

Many musicians, critics and music nerds will lament the popularity of the "list song," or a song that, entirely or in part, lists things. Billy Joel famously despises We Didn't Start the Fire, calling it boring and repetitive. Maybe that's true, but also, that song is a lot of fun... if you're not performing it night in and night out at every show for as long as you play music. 

I never get tired of Johnny Cash singing I've Been Everywhere or R.E.M. doing It's the End of the World as We Know it. Bob Dylan's Subterranean Homesick Blues is a classic, and The Nails' 88 Lines about 44 Women is the quintessential list song you've heard a hundred times, even if you don't realize it. My personal favorite is Neil Diamond's Done Too Soon, from his 1970 album Tap Root Manuscript. It's best followed by He Ain't Heavy... He's My Brother. They blend so well it took me years to realize they were two different songs, kind of like Pink Floyd's Brain Damage and Eclipse... Come to think of it, another list song. 

Let's face it. People love a good list. At the risk of being boring and repetitive, here's my list of some hidden costs of cancer and cancer treatment. 

Maybe try reading it to the tune of the often maligned list song The 12 Days of Christmas, on second thought, that doesn't really work. Honestly, a better fit would be We Care A Lot by Faith No More. I just can't stop listing list songs!

Cancer List Song

Steroid cream, numbing cream, facial cream,
hand cream, salves, ointments, and lotions.
Pills for nausea, blood thinner, acne,
acid reflux, aches, pains and fatigue. 

There are fuzzy socks for sleeping in,
eye drops and nasal sprays,
knit gloves stop cold creeping in.
This discomfort comes in waves,
I become the needy kin,
mostly post-infusion days.

The fancy bidet toilet seat that gently warms the water first,
the cheaper one (for toilet two) that will shoot a flash-cold burst.
An infrared ear thermometer, extra CPAP and M95 face masks.
For sleeping, $40 eye mask-- it's boring why, but feel free to ask.

I drive to preschool, regular school, the cancer clinic and pharmacy.
To the in-laws, the hospital, also the public library,
the children's museum, aquarium, and even the dispensary. 

The couch is broken and so's my chair.
We need a new one, Lord provide,
a cleaning service and lawn care
so the boys can play outside.
It'll keep them out my hair.
Let mental health be the guide
to my wife and kids self-care,
though like The Dude, we will abide.

Exercise classes, scented candles,
bath bombs, yarn for knitting,
trampoline park, fuzzy sandals,
Seriously? You've gotta be kidding.
Our account is something I can handle,
but this adds up, the budget's slipping!

Enter GoFundMe

The first thing people say is, "Let me know if there's anything we can do." If you're the next-door neighbor, I might send the boys over to play sometime when I need some space to rest, also providing fresh hot meals on infusion days. We're pretty lucky to have such great neighbors. If you live locally, you might send some oven-ready or freezer meals; maybe help with a small home project. 

But most of our network lives out-of-state or several hours away. People reach out and call and pray and would love to do more, but are too far away for hands-on assistance. 

Initially, my wife and I didn't really consider GoFundMe as an option. It has seemed more like a tool to help people in financial crisis and we're just... living our life, rebalancing the budget, trying to get by and find our way through the sudden changes. I finally agreed to a GoFundMe page when I realized that it allows our distant friends and family to step in and help in a way that works for everybody.

Some days the side effects are hitting hard, and we're ordering take-out. The couple hundred dollars in Door Dash credit we were gifted by friends is a boon in these situations, but you can't use Door Dash to pay the house cleaners that are picking up the slack on chores I can no longer keep up on.

Now I look around my house and think, "My siblings bought me that bidet. My childhood friend bought us dinner tonight. My cousin bought the Pepcid and this sweet face lotion. My Aunt paid for my blood thinners." The list goes on and grows bigger every day.

I'm surrounded by physical objects helping me fight cancer, provided by those I love and who love me. This list of caring friends and family is my favorite list of all.

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.