Categories
The Cancer Journey

A letter to Dave

Hey Dave,

I appreciate the chances to come and hang out with you and your family this weekend. It’s been a crazy kinda of COVID year and doing something as normal as a picnic just felt good. So, thank you.

Meeting your friends and family got me thinking and appreciative of my cancer. It’s kind of tough to say that there is anything about cancer to be appreicative or thankful for, but this year I am starting to see the silver lining in things a lot more than I use to.

On the surface it would be easy for people to say that there is no reason you and I should be friends.

You like Keystone Light, which if he were alive I know my dad would appreciate. I like overpriced locally brewed IPA’s.

You love to fish and I can’t even cast a line without catching the closest tree branch. Instead I spend my time relaxing perched on top of a skinny bicycle seat pedaling away for hours.

You’re a smoker and I am an asthmatic. But let me say I admire the big fuck you that you give to cancer by continuing to smoke even though I am sure your doctors have told you to stop.

You’ve got a large wonderful family of kids and grandkids. I’ve got three cats. In common we both have wonderful wives who love us and for that I know we are both grateful beyond words

The picnic today proved you have an infinity for all things meat cooked on the grill. I’m a vegetarian who still loves the smell of brats and hamburgers sizzling over an open flame. It was all I could do to not fall off the veggie wagon today.

So why are we friends?

Well as we both discovered at the picnic that we like those little shooter of Honey Jim Beam, but I think it’s more than that.

It would also be easy to say that we are friends because we both have been fighting cancer this year and our radiation appointments where next to each other Monday through Friday at 845am and 9am, but it’s more than just hospital administrative scheduling.

I think for people to be friends each person has to offer or bring something to the friendship that the other person might be lacking or in need of to improve themselves.

For me, the first time I heard your booming, “Alright, alright. It’s a good day.” bouncing down the hallway of the radiation office hallway my spirits where lifted a little bit higher at a time when I couldn’t always be so optimistic.

I know I am not the only one who felt that way. I would catch the nurses and technicians smiling at each other when they heard you. You brought a little bit of joy, optimism and sunshine into a place that just doesn’t see enough of that every day.

For that we are all grateful.

I remember the first time we exchanged cancer diagnosis info standing outside Swedish Medical. I realized quickly you were one tough son of a bitch. Here I am thinking I have it bad with six weeks of radiation treatment and you are rattling off the brain surgeries you’ve had, the fact that you are doing a chemo treatment and radiation therapy. Not once was there a bit of self pity or feeling sorry for your self. Like I said, one tough son of a bitch.

During my treatment I was reading a book about the legendary Boston Celtics player, Larry Bird. He was known for his toughness and ability to play through all sorts of injuries and pain never letting on that he was suffering. You, my man, are the Larry Bird of cancer treatment.

I’m telling you all this because I feel it’s important for you to know that even though our friendship is new and has been brief you’ve had a real impact on my life.

So, thank you for taking the time to show me what strength and humility look like during the toughest and shittiest times of our lives.

Your cancer comrade,

Jay

Categories
The Cancer Journey

An open letter to my wife, family and friends

I start this letter with hesitation. I know that I can be preachy, a know it all and just a general pain in the ass. I can read a book or listen to a podcast and all of sudden I’m expert. In fact I’m pretty sure I could preform open heart surgery if the book had step my step illustrations.

Knowing this about me, know this letter comes from a place of love and concern. Here goes…

First things first. I don’t want you to get cancer. I’m sure you don’t want it either. There are some things that no one wishes for.

Statistically about a third of the population will get cancer. The lucky ones will get it very late in their life and it will have no or very little effect on the quality of their life. I want you to be in the two-thirds group from start to finish.

Here’s a another truth about me. I am a selfish individual. Going through my own cancer treatment has sucked. I’ve been sliced opened, biopsied and radiated until I glowed nuclear green. At the end of the day that’s all temporary and I think I did a pretty good job of sucking it up and muscling through it. They (not sure who they is but they are credible) say that our bodies can’t remember physical pain. I would agreed with that as I can’t actually recall the pain and discomfort I went through.

What I do remember is the pain and sadness on your face when I told you I had cancer.

I remember the look of hopelessness and concern on your face when I came out from under the anesthesia after five hours of surgery.

I remember how you would quickly ask what was wrong when I shifted to get comfortable on the hospital bed or at home on the sofa as I let out a groan.

I remember the guilty look on your face as we ate dinner and you were enjoying your food while I had to use lidocaine to numb my throat just so I could swallow mushy bland foods. Strangely I still love and eat oatmeal for breakfast almost every day.

I don’t want to to be in the position that you have been in for the last six months. I’m not sure I could deomonstrate the type of strength you have shown.

So help me and do a couple of things to take care of yourself and put the odds in your favor that you want get diagnosed with cancer.

Here comes the preachy part. Can I get an amen!

  1. Don’t use a tobacco. That’s a no brainer. We’ve heard it all our lives and the tobacco industry finally came clean, that yes maybe they had been suppressing data for years that using tobacco was bad for you. So don’t start and if you already do use tobacco, stop. And no vape pens are not a healthy alternative. Plus is makes your look like a tool sucking on that glowing electric phallic device.
  2. Exercise. Get outside– walk, run, hike, ride a bike or skip across a meadow. Just move. Find something you enjoy doing. Do it a lot and sometimes do it hard. Your body will thank you for it.
  3. Eat well. Eat more fruits and vegetables than you do meat. Avoid processed meats. Question foods that say ‘fortified’ Why would a company remove all the nutrients just to add them back in? Drink lots of water. Avoid foods with added sugar and artificial sweetners.
  4. Maintain a health weight. See numbers 2 and 3 above to help you with this. There is no magic diet that will help you loose weight and keep it off. Strive for balance and consistentcy
  5. Limit alcohol. Yeah this one kills me too but the data supports it. Less alcohol in your life lessens your chances of having cancer in your life. Following this will help with number 5.
  6. Ensure your kids get immunized. My particular neck/oral cancer caused by human papillomavirus (HPV) also causes cervical cancer. A simple vaccine can greatly reduce your or your child’s risk. While you’re at it practice safe sex and talk to your children about how to practice safe sex. HPV, of which there are over a hundred types, is the most common sexual transmitted disease in the United States . Between the ages of 11-12 is the best time for the vaccine to be administered but can be started as early as age 9 and adminstered up until age 26.
  7. Know your family medical history and follow your doctor’s recommendation for screenings
  8. Avoid long bouts of unprotected time in the sun. Wear sunscreen especially on your face, neck and ears. Don’t ignore that weird growth that seemed to show up overnight on your neck. Get it looked at by a doctor.

So please, love yourself as much as I love you. Take care of yourself. I need you in my life as long as possible.

With heart,

Jay

P.S. Bonus points. Share this with someone you love.

No I am not a doctor but at the same time I did not make up the above advice. No #fakenews was used to write this blog. I write from the heart but the science is real.

There are a lot of great credible sources out there that I have used to educate myself on my cancer journey. Below is a short list.

https://www.mayoclinic.org

https://www.cdc.gov

https://www.cancer.org

Categories
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.

Categories
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.

Categories
The Cancer Journey

this is not how i die

The high speed crunch of gravel under my bikes tires was the only sound that punctured the quite of the Appalachian forest.

The day had not gone as planned. Exploring the back roads outside Asheville, NC I was convinced I could find a gravel road that would take me up to the Blue Ridge Parkway. If my map skills were correct I would pop out just a few miles below the start of the climb to the top of Mount Mitchell, the highest point east of the Mississippi River.

The gravel road turned to a a large rocky double wide track and soon my map reading skills (or lack of) were confirmed as the road narrowed to an overgrown trail.

No worries. The climb to this point and had been long and hard. The way back would be fast and fun.

And here I was, flying down the gravel road.

And then there I was flying over the handle bars. Flying for so long I begin to run through the options of what would happen when I hit the ground. Broken collar bone. Concussion, Cuts and bruises. Or worse.

Oof. My face and helmet slowed my acceleration as I skidded down the road. My bike laid behind me. Stopped in place with a large rock that had flipped up wedged between the tire and the front fork.

I laid in the dirt accessing my injuries. This turns out was not how I would die.

I would test the death by bike theory a couple of more times in the years to come. Once more by launching over the handle bars during a sprint finish at a race. Thirty two miles an hour face first into the pavement didn’t kill me

The inattentive old man in the Honda CRV couldn’t get the job done either. Despite the illegal u-turn in downtown Morrison, CO that sent me over the hood, into oncoming lane of traffic and again face first on to the pavement. The theme was the same but fortunately for me the result wasn’t death.

How do I die?

Thanks to David Baron, author of The Beast in the Garden, I was sure for the longest time that it would be death by mountain lion. Baron lays out in chilling detail the beauty and stealth of the American mountain lion and how they have come back to the reclaim the land we stole from them.

Long before I moved to Colorado, where we have mountain lions like dogs have fleas, I was convinced that every solo bike ride or hike was solo only in that I didn’t see the mountain lion stalking, scrutinizing, and evaluating me as a meal option. Only after it realized how scrawny and lacking in meat on my bones was I passed over as a meal. Sometimes it pays to be lacking in caloric value.

Baron hypothesizes that anyone who spends any time in the wilderness in mountain lion country has been stalked or observed by a mountain lion. Often on late night commute homes, I felt lucky to make it home alive. I would thank my lucky stars as I pulled up in to my driveway. Amazed I hadn’t been snatched by a mountain lion from behind the wheel of my car while sitting at a stop sign or attacked from behind while pumping gas. Yes, the mountain lions in my death scenario stalk hapless white suburban dudes late in the evening. At the bottom of the urban food chain my time on Earth was destended to be short. I was convinced they were every where. It was only a matter of time.

You would think a vacation to the beach would help ease my mind but where mountain lions could not tread sharks waited for me to place my tasty little toes in the water. Vacations to the beach are relaxing for some, but for me they are nothing but a long sandy funeral procession.

Death by shark began long before the paranoia of death by mountain lion set in. Growing up in Georgia every summer required a family vacation to Florida. As we crossed the state line a bulletin would go out and the sharks like horse flies swarming on a cows ass would begin to gather off shore.

Maybe age six was a tad to young to see Jaws and maybe age six is also way to young to begin thinking about how you will die.

Feigning fun splashing in the ocean as a child I would pee in my little swim trunks hoping that sharks would find the taste of little boy mixed with urine unappetizing and at the least not very nutrious. At the same time standing in the water shivering with fright, wondering if the scab on my knee had been loosened by the warm salt water and was now sending out an invitation for sharks in a hundred mile radius that there was a young boy like a wheel of stinky French cheese marinating in salt water and urine ripe for the eating.

At some point I stopped thinking about how I was going to die. Occasionally as I pedaled solo through an eerily quite grove of trees or sat on a surfboard bobbing off the coast of Oregon at Otter Rock, I would be struck with a moment of “Oh, shit!” this it. Then a bird with chirp or an curious otter would poke her head from the water to inspect the strange creature floating on the board and the thought would fade from my head.

It wasn’t until my doctor called me a in January this year to tell me that I had cancer that I began to think that maybe the mountain lions and sharks would not get me after all.

But this is not how I die? Actually I don’t know this, but I believe it’s true. One bilateral neck surgery and half way through six weeks of radiation treatment I feel strong, confidant and resolved to keep on going.

Radiation sucks but it doesn’t feel like the life is slowly being drained from. I am tired. My throat is dry and sore. Food taste metallic but I force myself to eat.

I am fortunate.

I see the eyes of some of my fellow patients and can tell they are fighting. No, deciding if the struggle is worth it. I don’t know their diagnosis or their treatments but they are obviously worse than mine. Maybe the chemo that is poisoning their bodies while killing off the cancer is just too much for them to handle. I hope not. Maybe this is the second, third or fourth time their cancer (It is always our cancer. It’s too personal to be anything but ours) has come back. The fight that was there in rounds two, three and four has disappeared. I hope not.

Their stress is real and palatable. We all wear mask, because this year fighting cancer got a little bid harder when COVID19 showed up. Fighting for our lives just got a little bit harder. Like running a marathon while being chased my mountain lions but now someone is shooting at you too.

The mask dehumanize us and the encouraging or friendly smiles are lost behind the surgical material and cotton that shroud our faces. We try to be human to each other especially since what is happening to our bodies feels some inhuman.

Monday through Friday I pass a gentleman in the hallway. I leaving my treatment and he is headed for his. I call him 9am, the time of his morning treatment, but don’t actually know his name. This doesn’t stop him from always greeting me with a big hello or telling me to enjoy my weekend. Maybe he calls me 845.

I like his optimism. Somehow I don’t think he is afraid of sharks or lions. We don’t have time to. We both have bigger battles to fight.

Categories
Uncategorized

Wrapping my head around it all

I’m not even sure where to begin this post. Over the last month I have been “quarantined”. Okay not really quarantine but laid up in the house recovering from cancer surgery. I had what is referred to as a radial neck dissection (large L shaped incision on my neck followed by the removal of 16 lymph nodes) and basically what amounted to a right side tonsillectomy with some biopsy on the base of my right tongue thrown in for good measure. The tonsillectomy or should I say the recovery from the tonsillectomy was some of the most pain I have ever experienced. I am sure there are things that hurt worse but I have no desire to discover them.

I was just a week away from returning to work when I got the news that my company was shutting the doors through March 27th. While engrossed in my shut-in, the world went bat shit crazy and I find myself with millions of new roommates only we can’t share a room much less a work space, a pint at the local bar or even a hand shake.

I wish at this point I had tons of wisdom to share after my 30 days of being homebound but I am afraid it’s really just what has worked for me and hopefully you will gleam a couple of nuggets from it…

  1. Yes, stream Netflix, Apple+, Amazon Prime and so on and so on but do it with intention. Just like beer sometimes you can have too much of good thing. Take a break with the intent of learning, discovering and growing.
  2. Trade your favorite stream for a book or two or three. I have always loved to read but this hiatus from real life has made me realize how little I had been reading the last couple of years. I just finished books number seven and eight yesterday. Yep, I now find myself reading more than one book at a time.
  3. Write a letter or a postcard. I was besieged with generosity from friends, family and co-works while I have been out. After I began feeling better, I sat down and wrote them all thank you cards (Yes, the old fashion kind made from paper and you put them in an envelope with a stamp). It felt good and I am sure that at least some of them enjoyed the surprise of getting something other than their 2020 Census form in the mail. I enjoyed it so much I am continuing to send out cards to folks to just say “hi” and let them know I am thinking of them.
  4. Take naps. I’ve needed naps as I heeled from surgery but now with my strength and energy returning I still find naps a wonderful thing to revive me midday. https://www.sleepfoundation.org/articles/napping
  5. Get outside. Go for a walk, take a bike ride, or get to know your neighbors from a far as you practice social distancing.
  6. Work from home. Strive to be productive and get everything done a quickly as possible. I bet you will begin to realize that so much of your time at work is spent doing things that are unproductive (e.g. meetings, office politics, herding cats)
  7. Online courses. Maybe reading alone is not doing if for you. There are tons of fee and paid classes online.
  8. Cook. I have made so much bread lately. Warm bread with butter never gets old
  9. Plan your summer. This won’t last for every. I have been having a blast pouring of maps and articles on the Colorado Trail as I get ready for my bike packing trip this summer.
  10. Spring clean now. I rescued an entire room in our basement. It’s organized and I repaired a vacuum cleaning that had I had squirreled away down their two years ago. I now own two working vacuum cleaners. I guess you could say “Life doesn’t suck.”
  11. Stay informed but don’t get sucked in. Just because your friend repost something doesn’t make it true.
  12. Resist the urge to panic buy and horde. Remember Y2K?
  13. Support your local food bank with a monetary donation. Most of these food banks are short on volunteers to process and sanitize food donations. It is much easier and safer for them to leverage your cash donation .
  14. Give blood if you can. Call you local Red Cross or blood donation center for details.
  15. Start a blog or a journal. I did. It doesn’t matter if anyone reads it. Sometimes it helps to just get things off our chest.
  16. Take another nap and then go outside again. Sunshine and fresh air are free.
  17. Eat lots of fresh fruit and vegatables. Challenge yourself to cook some healthy meals. It’s safer than take out. https://www.thugkitchen.com
  18. But, order take out from a local restaurant to support your local business.
  19. Do push ups, jumping jacks or body squats. Your gym ( you know the one you never go to) is probably closed. Working out at home is easy and you will be amazed how sweaty you can get even with out that fancy gym equipment.
  20. Meditate, read the Bible or Koran. Strive to bring some peace back into your life. Be patient with yourself and others.

Categories
The Cancer Journey

The Worst Day Ever Mights be the Best Day

The words.

A quick intake of breath. A darkening around the edge of my eyes. Closing in until all I can see is pin pricks of light.

Sounds disappear from the room. All I could hear was the pounding of my heart.

Slowly the doctor’s voice comes back into focus on the phone.

It was nothing like that. 

Instead, it confirmed what I knew in my gut. Yes sometimes you just know. Sometimes you suspect the worst because you know it’s the truth before you’ve heard it.

A thank you for the doctor. A list of phrases to google and start learning more and then I hang up.

Nothing else.

I get up from my desk and go back to work.

I hold that information all day long. Pretending to care about a customer’s problem. Which really isn’t a problem but I pretend it is. 

Wondering what they would say if I just blurted out, “I have cancer. I don’t care that your zipper came off your three year old jacket. Things wear our. Things fail, like my body has failed me. Take it to a seamstress. That’s what they do. Fix zippers. Maybe they will care.”

As the day moves forward. I worry. Not about the cancer, but telling my wife, Ashley. I don’t want her to worry. I know she will. 

I tell her. She worries. I tell her not to. It doesn’t help. She’s worried and upset. They’re tears and hugs. It helps but it doesn’t.

The clarity has been building all day. This is a bad thing. Cancer is no joke, but it’s also a kick in the ass. My ineptitude to act over the last couple of years to make changes in my life is put into focus.

I have to change the direction of my life. Redefine the passion. But first….

I’ve got to kick this cancer.

The anxiety builds day after day. Not because I have cancer but I have to now start sharing the news.

There’s a reason people like to use text. It’s way easier to say, “I have cancer” when you are not looking someone in the eyes. I try to avoid doing it that way but some people just don’t pick up the phone when you call. (Looking at you little brother and sister). They call quick when they get the text. 

Two weeks in and I am still telling people. The act of calling and talking is exhausting. Some days I have a list of people to call, but I don’t. I get worn out just thinking about it.

I could get back on Facebook and tell the world. That feels like an overshare.

Back to the clarity. It continues in spurts and starts. This blog. My first. Is part of that.

The anxiety pushes away the clarity at times. There are more tests to be had. The You Have Cancer Test is just the first. The next one, We Need to Figure Out Where the Cancer is in Your Body Test, brings on several nights of inner dialogue while laying in bed waiting for sleep.

“What if it has consumed my whole body and I only have a few weeks to live?”

“How could I have cancer? I feel fine.”

“Will I go bald?”

“What if they have to operate and cut out a huge chunk of my neck and maybe my tongue? Is that how I want to live?”

“I don’t want to die. What will Ash do?”

Nine out of ten times when you tell people that you have cancer, this is what they say…

“What? I don’t know what to say.”

No one ever knows what to say and that’s okay.

Back to that clarity. It’s still coming and it feels good. I still don’t know where it will take me but my eyes are open wide and I am ready for the ride.