The Cancer Journey

“Laughter is the only medicine that comes without side effects” Shannon Alder

Eeeeeeek….. the piercing scream of the small child shattered the quiet murmur of the grocery store. Even the soft 80’s rock being piped in from the speakers of above seemed to pause for a heartbeat.

“Mommy! It’s the cereal monster!”

“Shit” I was in the cereal aisle. Cancer and COVID hadn’t killed me but all of sudden I was in danger of being ripped to pieces by a cereal monster. Whatever the hell that was.

“Caitlyn! Hush! It’s not nice to point.” I heard a frantic mother admonishing her child. Looking to my left I could see the exasperated mother quietly trying to correct her child while pushing her young stubby arm down. I realized too late that the child was clearly pointing at me.

Instinctively, my hand went to my mask-covered face and touched the visible scabs and dermatitis which were left by weeks of radiation to my throat and face. There’s no doubt that the dried scabs resembled bloody cornflakes. From a vampire’s perspective, I probably looked like a a heaven-sent breakfast. To a small child, however, I looked exactly like the Cereal Monster. The irony of the situation did not escape me. Looking like I did, I was indeed standing in the cereal aisle, directly in front of the corn flakes.

This may or may not be a photo of me at the end of my radiation therapy.
Photo by Moviestore/REX/Shutterstock (1631865a)

I toyed with the idea of raising my hands above my head in my best Lon Chaney* impression and advancing on the still terrified child and her mortified mother. From a monster’s perspective, the child was worth terrorizing before consuming. She had obviously been plumped for maximum monster diet satiation from a steady diet of sugary cereals. In the end, though, I let her scurry off with an oversized box of Lucky Charms clutched in her grubby hands. Truly, it was her lucky day to have escaped the Cereal Monster.

I’ve been noticing the side effects of my radiation treatments for several weeks but, like anything we live with, we tend to forget about or at least push them to the back of our minds. There’s no use dwelling on what you can’t change, right? For others, though, coming across my new radiation enhancements was a bit startling.

I actually felt pretty fortunate, as many of my side effects didn’t show up until late in my treatment. The ones that did were likely to go unnoticed. The splotchy hair growth on my face was a great example.

One month into the COVID “Shelter at Home” order I didn’t look much different than many of the zombified dads I saw trudging around my neighborhood with kids in tow. There are only so many times you can mow your grass in a week. So many of these dads had been recruited as de facto baby sitters by moms with jobs or moms who were just sick of doing all the heavy lifting. Moms inevitably sent Dads and their broods out into the neighborhood.

This new Dad Look of dirty sweat pants, uncombed hair and patchy razor stubble from half hearted shaving attempts came from the hard realization that home schooling kids for eight hours a day, providing three square meals and being a constant source of entertainment was hard work. And to think that so many of us complained about the quality of public education pre-COVID! Walk a mile in a teacher’s shoes and you will be singing a different tune.

My look, while similar to those shell-shocked dads, was cultivated from a lack of energy and the inability of my facial hair to grow back where the radiation had entered and exited my face and neck. Along the way, the the radiation also nibbled away at my energy like a mouse does cheese.

It’s human nature to want to pick and poke at growths and oddities that arrive on our skin. And there’s clearly a reason that a show like Doctor Pimple Popper not only exists–but thrives!

Running out of your own zits to harvest? No worries! We at TLC have your “Summer of Pop-A-Palooza!” I kid you not. That’s precisely how the show was advertised.

That leads me back to the time I was standing in front of the bathroom mirror and marveling at my patchy hair growth. I rubbed my finger across the stubble and was surprised to feel the hairs come off under my fingers. I was my on Wolly Willy.

I began by rubbing out some totally to-die-for hipster side burns. As I began to work on creating an ironic jaw line facial hair, I ran into a problem. Not only was my facial stubble coming off but so was my skin! Not wanting to rub down to raw bone, I immediately stopped, turned on the faucet and rinsed my facial hair stylings (and a bit of skin) down the drain.

Itchy and scabby is how I would describe my mood in this photo.

Fun and games aside, when I’m not terrorizing small children and trying to create my own “non-dad’s frazzled sheltering-in-place look,” I’m busy trying to force food down my gullet. The oncology medical teams preach trying to eat healthy and enough(!) in order to maintain an appropriate weight during treatment, just like a Pentecostal pastor preaches abstinence and waves poisonous snakes above his head. The body needs those nutrients and protein as it battles to rebuild the healthy cells which have been knocked out by the radiation. Losing too much weight can result (in my case) of my mask not fitting properly. That could result in having to have a new mask made and, with that, new points mapped on my head and neck to ensure the radiation still targets the correct areas.

This is the mask that bolted my head to the table so as to ensure the radiation entered the exact same spots on my neck and head. I did this every morning. Monday-Friday. For six weeks.

How hard could eating possibly be? It actually wasn’t too bad the first week or two. Slowly, though, the radiation began to do strange things to my body, specifically to my taste buds, my saliva glands and the entire interior of my mouth.

Have you ever been punk’d by someone who gives you what you think is one food but it actually tastes like something else? I can remember being punk’d as a kid and punking others with baker’s chocolate.What looks like sweet milk chocolate can be bitter and disappointing.

Radiation Therapy is the Ashton Kutcher of medical treatments. Ashton Kutcher has been living in my mouth for five weeks now and punking me along the way. Everything that passes my lips taste like wet cardboard despite my expectations. I’m not talking about a really nice high end cardboard that you might find a box of Jimmy Choo’s nestled in. I am talking about the cardboard you find in a basement coated in years of dirt and cobwebs.

And because I have a hard time producing saliva, I eat with a water glass in hand to help moisten the cardboard as it slowly dissolves in my mouth into a thick paper mâché. Ashton is no help either. He sits across from me usually with large piping hot large extra cheese pizza in front of him. Laughing as I gag my food down.

The other day Ashton got a taste of his own medicine. As he was shoving a slice into his maw, I could tell something was wrong. His moans of food pleasure suddenly stopped. With his mouth agape, he bent forward and expelled the bubbling hot pizza back on to his plate.

“Ahh..ahg…my mouth.. so hot…burns”

Pizza cheese burn. Culinary napalm that sticks to the roof of your mouth and leaves sores, blisters and the inability to eat anything crunchy for days.

Welcome to my world Mr. Kutcher, where the inside of your mouth is raw and tender. Chewing becomes not only a challenge but a small victory when you can masticate your food into small enough bits that swallowing only hurts as bad as the chewing–and not worse.

Shortly after the pizza incident, Ashton packed up and headed back to Hollywood. Evidently California has some of the best pizza burn doctors in the world many will often throw in a face tuck or a shot of botox for a nominal charge.

Lucky for me, my mouth seems to be on the rebound, as well. Each day it gets a little easier to eat. I’ve graduated to a better tasting cardboard and the sores inside and out are starting to heal. Now if I can only find a surgeon who can do something about this cereal on my face.

*Interesting fact. After writing this sentence I did a quick Google search of Lon Chaney as I couldn’t remember if it was Lon or Laun. Turns out that Chaney was diagnosed and struggling with bronchial lung cancer which was exacerbated by artificial snow made with cornflakes that became lodged in his throat during the filming of Thunder.

The Cancer Journey

“Never let formal education get in the way of your learning” Mark Twain

No one ever accused me of being a star student. In fact I spent the first part of my early childhood education in “behavior disorder classes”. Being a pre-Ritalin child there was not a magic pill to keep me in my seat so I was sent to the BD class to give the teacher and other students a break from my exuberance. High school and college were better but I am not sure that I learned a lot that moved me forward in life. Instead I took so much more away from the informal education that was provided to me. Waiting tables and bartending, I engrained the mantra of my GM, Dick Rowe, “kill ’em with kindness” into my brain so that it resonates even today in my head when I deal with an upset customer in my current role as a outdoor retail store manager. Racing bikes taught me the value of creating and following a plan. If you want to go faster and farther then you better have a plan to get there and make sure you stick to it.

This is not to dismiss formal education. Without a formal education most of us would still be counting on our fingers and toes and reading and writing on a level of a student in a school run be Betsy DeVos. Where would high school grads be without the idea of furthering their formal education by heading off to college. Universities often tout this higher formalized education as what shapes and molds young adults into productive members of society. If I remember correctly formal education was Monday through Thursday (I never took classes that met on Friday) and the weekend shifted away from Friday to Sunday and instead begin on Thursday as soon my last class ended. The real learning began on those long weekends.

Once the weekend begins the informal learning began. Some of these informal courses that I and my keg buddy peers dabbled in that were offered in the informal class room of life included- Finance for Beginners- How to Drink on the Cheap all Weekend Long, Discovering the Science of Optics with Beer Goggles, Your First DUI an Introduction to our Legal System, and Math for Beginners- negative numbers in your checkbook are less than zero.

Informal learning never stops and this is the case when your are diagnosed with cancer. Yes, there is plenty of formal learning that happens. I know I regret not having paid better attention in some of my science classes. If I had paid attention instead of doodling penis and boobs in my anatomy and biology books, I might have actually remembered that we have hundreds of lymph nodes in our body and not the six to eight I thought I had. Surely this would have saved me from an internal freakout when the doctor told me they removed 18 of them from the right side of my neck. In my mind I was now down negative ten lymph nodes. Lucky for me a quick formal lesson from the doctor set me straight. Obviously and thank goodness he got much more out of his formal education.

Since my diagnosis the learning for me has not stopped. I am learning more about cancer than I want to, discovering things about myself and realizing that friends and family are the shit when you are going through the shit.

The formal education started shortly after my diagnosis as I began making the rounds to the various doctors that would be part of my treatment. Armed with a stack of pamphlets, I headed home for some formal education. There was much learning to be done around the human papillomaviurs (HPV), what a bilateral neck dissection is, and which is worse P16+ or P16-.

When the doctor told me that I would need radiation treatment after my surgery I was super excited. As a Marvel comics fan I quickly begin to envision all the super powers I would be blessed with. Maybe even better I could pick the ones I would have. I could have the doctor tweak the dials for super strength and invisibility. Sadly my formal education had failed me again and the doctor shortly after he explained lymph nodes to me also explained that the type of radiation treatment I would be receiving would not endow me with super power. I was obviously confusing cancer radiation treatment with radioactive spider bites `a la Peter Parker.

The formal educational pamphlets provide a ton of insight and helped me understand in not too scary terms in what I could expect before, during and after my treatment. There is always a big emphasis on every person is different in how they respond to treatments and the phrase “you may experience…” showed up a lot when reading about the various side effects and outcomes I could expect. Fare enough but what I learned is you don’t know until you know.

The formal learning starts on Day 1 of your diagnosis.

For example when they talk about people experiencing a metallic taste in their mouth during radiation treatment, what I really learned is that unless you have sucked on a handful of nickels while trying to eat dinner then you really can’t comprehend that metallic taste.

The formal is transcribed into the informal learning on almost a daily basis before and during treatment. When my doctor explained to me about my bilateral neck dissection and partial tonsillectomy, I could not comprehend what he meant when he said I would be in a lot of pain and discomfort after the surgery. I quickly learned that having a tonsillectomy as an adult hurts. Not like in a John Cougar Mellencamp “Hurts so Good” way but like swallowing a metal spikey ball way. And because there is only so much damage you can do on the inside of a person’s mouth and throat, I was also filleted open along the right side of my neck. I got a small taste of what it might be like to have a stroke as I woke to find I had reduced control of the right side of my face and shoulder. Evidently you have to go through a lot of muscle and nerves to get to those lymph nodes.

Well that hurt. The literature gives you know clue on how crapy you are going to feel after surgery.

“You may experience…” also showed up, in a lot of the literature I was given, when talking about energy level, brushing your teach, and dry mouth. I now know what it feels like to be an old outdated iPhone. I could start the the day with a 100% charged battery but after just a few hours of use I would be flashing the 10% battery life left warning. I often felt like an iPhone 6 in an iPhone 11 world.

Brushing my teeth which I had always taken for granted now became a thing of abject misery. A sharp pointy stick poking repeatedly at the sores on the inside of my cheeks, I quickly learned could not have felt any worse than my toothbrush. I am still pining for the good old days when I could just turn on my trusty Sonicare toothbrush and let its vibrating bristles work their magic on my teeth.

There is not enough water on the planet to cure the dry mouth caused by the radiation treatment. The “you may experience” dry mouth and will need to ensure you are staying adequately hydrated sections of the formal cancer literature should be replaced. Instead it should state “to understand the type of dry mouth you will experience please do the following. One, take a hair dryer and turn on to highest heat setting. Open mouth and allow hair dryer to blast hot air into your mouth for five minutes. Next shove 10-15 saltine crackers into your mouth and begin chewing while still running the hair dry at full blast. Once completed if you still have any moisture in your mouth repeat.

Trying to solve dry mouth by drinking copious amounts of water only creates other problems. I spent so much time through out the day getting up to pee that I actually got a call from my utility company. They had noticed a spike in our water usage and were calling to let me know they suspected we had a water leak at our house. I thanked them them and let them know that we had just been eating a lot more saltines and in turn had upped our water consumption.

The list goes on and on for the day to day informal lessons cancer has provided my body. Who knew that pain killers caused constipation? A reason unto itself not to get addicted. Who wants to be strung out and full of shit?

Radiation treatment around your head and neck region shortens shaving times. With hair only growing back in patches I can shave my entire face with out having to lather up with Barbasol.

Surgery and radiation are (at least according to my stack of literature) effective treatments agains cancer, but naps and naps with cats can do wonders, too.

Not all my cancer learnings have been about the physical. Friends and family are a must (It goes without saying that great doctors and medical staff also help. I’m very fortunate as I have all of them in spades) in making sure you can push through the shitty times. Here’s a short list of how I’ve leaned on friends and family these past months.

  1. Leveraged my illness to get lots of cookies by telling them that my doctor actually encouraged me to eat cookies to maintain my weight.
  2. Same as number one but insert beer for cookies. No I have not been sitting around the house drinking beer during my treatment but I did have a couple of beers once I was able to after I healed up from surgery and before I started radiation.
  3. Trick them into helping me knock out my Honey Do List. This actually happened by accident when I mentioned to an electrical engineer friend that I was going to replace some wall receptacles as soon as I felt better. It took him longer to go to the hardware store to purchase them that it did for him to actually replace them. I’m still looking for someone to trick help with some painting.
  4. Food, food and more food. At times I felt like I was in a foodie wet dream. Our fridge and freezer were stocked with homemade soups, pastas and chilies. Four weeks after my surgery we were still living off the kindness of incredible friends who also turned out to be amazing cooks.
  5. Companionship. Sometimes just having a friend or family person in the room was enough. No words needed.
  6. Had a laugh at their expense by making inappropriate cancer jokes.
  7. Letting myself be vulnerable and letting people help me. This was tough me for me as I like to think of myself as being pretty independent, but I realize that my friends and family were there because they wanted to help and support me and I needed to let them do that.

I am not sure that I am going to come out of this cancer thing on the other side any smarter but I am hoping for a little bit more wisdom, humility and compassion. I use to roll my eyes when I heard someone talk about how cancer changed their life or scoff at the idea of pink ribbons and charity rides. Maybe some of that came from my own stupidity (okay maybe a lot of it came from that) or some sense of invincibility that because I ate healthy and exercised that I wouldn’t get cancer.

Cancer has changed my life. No I don’t have super powers but I do have super friends and family. I don’t have all the answers but I do have a new way at looking at my life and how I view others. I don’t have everything but I do have a chance to help others have more. And that I didn’t have to go to school to learn.