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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.