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The Cancer Journey

Finding Ned

My cancer journey. You see it with a hashtag attached to it and if you spend anytime talking with someone who has cancer they will often mention it.

What is it, you ask? In short, it’s a way that the cancer community politely says “I will never get used to this f’ed up lifestyle that is caused by this disease that, while the medical community continues to make great strides in curing, still throws curve balls at me, which often leave me feeling confused and alone but, despite all those associated lows, I still experience some incredible days that are full of awe and wonder.”

Really, though, what is it?

Well, it’s a journey for sure but maybe the easiest way to explain it is to think about it as a hike.

Hold my beer. I’m going on a cancer journey. I mean, a hike.

This is how the hike plays out:

One day you’re sitting around the house or maybe at work and the phone rings. It’s your doctor. You just went and saw her the other day because you just haven’t been feeling all that great. She confirms the worst fear you have about your health. Quickly, though, she lets you know that there may be help available for you in the form of a hike.

She goes on tell you that it will be a difficult hike though, tougher, in fact, than any hike you have ever done. She doesn’t say it but you infer what she means: ‘This hike is often worse than your current health issues and, quite honestly, not everyone finishes it. Best of luck to you.’

A week or so later you start hiking. You would have preferred to start immediately but there was a ton of paperwork you had to fill out first, both for work and for your insurance company. Insurance company? Why do you need permission to go on the hike, you ask? Well, you don’t. Unless, of course, you don’t want to pay for all the expenses yourself and then, well, you do.

At first the hike is pretty easy. Almost becoming routine, you march forward, one foot in front of the other. The days tick by and you occasionally pass other hikers. They’re all friendly but many of them look worn down and seem to stumble along the trail. You stop to chat. After all, you’re all on the same journey, right? You try to hide your alarm as some of them mention that this is their second, third or even fourth time on this particular hike. It is also about this time that you first hear about Ned, whose name is always said with reverence, as if he is some mythical and elusive unicorn.

By the third week this hike is really starting to wear on you. You can’t pinpoint exactly what it is that’s causing your incredible fatigue. Perhaps it’s the fact that all your food has begun tasting like metal. You know you should eat because you need the energy but somedays you just don’t feel like eating. In fact, the more tired you get, the less and less you feel like eating at all.

When night falls you are thoroughly exhausted. You’ve actually been exhausted all day but you’ve had to keep moving forward, whether you wanted to or not. You continue to pass others on the trail or perhaps they pass you because, to be honest, you’re not moving very swiftly. Some of these passersby offer their most sincere words of encouragement. They tell you that you are a warrior and inspiration! You hardly feel like either of those things, though. You just feel tired and in desperate need of sleep.

As your head moves in a slow arc toward your pillow, you smile at the restoration that you imagine will ensue. Your soft pillow and fluffy down sleeping bag, both of which were so warm and comforting just a few weeks ago, rub angrily against your sensitive skin and irritate it to no end. You seize. What’s up with you, Skin? Your flesh is so immeasurably tender that the slightest touch immediately sends a rush of tiny embers of pain richocheting throughout your body. Your skin is cracked and peeling. An Oil of Ole model you are most definitely not. You plead with your skin to mercilessly stop and allow you to sleep and sometimes, just sometimes, it relents just enough to get through the night.

When you awake the next morning, however, you are usually no more rested than you were the night before. By the way, why are there clumps of your hair floating around in the tent? Weird. You touch your hand to your head and come back with a handful of hair…

Now you are taking on the same look of some of the other hikers you’ve seen on this trail. You’ve gone ahead and shaved your head. Why bother and wait for the slow and inevitable loss? Bald is beautiful, right? That’s what all the hikers say, at least. They continue to cheer you on. Like it or not, you are now a bald and inspiring warrior. Or so you’re told. In truth, you just feel like shit.

You’re not sure how much further you can go on this hike. You talk to others and hear stories about other hikers who gave up on looking for Ned. You’re still not even sure about this Ned guy. All you know is that it is imperative that you find him. You ask them why others gave up on Ned and everyone seems to have a different explanation.

Many hikers simply run out of money, as their insurance companies (if they even have that luxury) provide such little financial assistance that they have no other choice but to make the futile attempt to pay for their own medical expenses. Almost inevitably, those people are overrun with debt, which is so incredibly burdensome that it weights on the them like a 500 lbs backpack. With each step forward, this gross and unrelenting weight on their backs causes people to bend over further and further until they can hardly lift their heads enough to see the trail ahead of them. You think back to your first “bill” for this hike (a whopping $36,000!) and count your lucky stars that your insurance covered as much as it had so far.

Absolutely NO ONE has chosen to go on this wretched hike, yet it becomes obvious that some are better prepared than others. Some wear fancy hiking boots and carry carbon walking sticks. Some are even afforded a sherpa to carry their packs for them. Others, however, walk along on their tired and badly blistered bare feet, all their belongings stuffed in a paper bag.

This rude lack of equality weighs heavily on you but, like so many others on this trail, your own pack has gotten so heavy that all you can do is trudge forward, eyes on the ground, one foot in front of the other. You promise yourself that when this is all over you’ll give back and help make a difference. Again, though, you’ve got to find this Ned guy first.

What sucks is you still can’t eat. It hurts to swallow. Hell, it hurts to breathe. You’re losing weight. As the pack shifts and pulls across your shoulders it leaves weeping open sores. Some of your fellow hikers tout different kinds of miracle creams to help with the painful sores. Their suggestions help but only temporarily. You often wake up stuck to your sleeping bag in the morning, as all the sores oozed and then dried throughout the night.

The sun has beaten you when you arrive at your next camp. It is quite dark and a small group of hooded hikers sits around a fire. You stand on the edge of the shadows and listen to their quiet conversations. They talk about those hikers that are still seeking Ned. Some, they say, will find Ned and move forward, continuing to contribute to society for many years to come. Others, sadly, will come close but never actually find Ned. The figures roll the bones and make notes on their tally sheets. Your eyes grow big in horror. Tonight you sleep in the bushes, as you’re afraid to enter the circle of campfire light.

Your feet drag like the days. On and on and on. And then…

NED, 1o Miles

You can hardly believe it! For real?! Your pace and heart quicken. The day, however, drags on as does the next one and the one after that. NEVER has ten miles taken seemed like such a long and unattainable distance! You try to remain optimistic about the rest of your hike but worry and doubt have pushed against your thoughts and they slowly take over.

What if Ned isn’t there? What if I don’t make it?

You keep pushing and pushing yourself until one day you look up and you realize that you’ve finally found him!

NED!

No Evidence of Disease. His is the name that every cancer patient wants to hear. Some hear it sooner than others while still some never do. Others hear it more than once, as their cancer journeys often start over. Sometimes months later. Sometimes years later.

Finding Ned is undoubtedly the most joyous day for every hiker on this path. The grueling back-breaking pack of doubt, worry and anxiety you’ve been carefully balancing has finally and mercifully been removed. You take a deep breath and stand up a little straighter, a little stronger. You are now ready to face whatever is next for you, which, hopefully, is a trek far, far removed from that which you just endured–and survived!

That is a cancer journey.

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I Ride Bikes The Cancer Journey

Cliches

The miles were ticking by under the steady systematic whir of bike gears and the cereal like crunch of Kansas’s flint gravel. My body was on cruise control and even though I was only 70 miles in of the 200 mile Dirty Kanza I was confident that I would finish before the sunset at 8:45pm of what was turning into a perfect summer day. The wind was at my back and I had dodged the early mechanical problems that befell many riders in the first muddy 20 miles. I was dancing on the pedals as I passed other riders on the steep punchy hills.

And then the wheels came off the wagon, more specifically my pedal came off. An overlooked regular maintenance of my pedals had caused the body of my pedal to come detached from the spindle. The pedal body was still attached to the metal cleat on the bottom my cycling shoe and after removing it was I unable to reattach it to the spindle. I stood road side and watch riders I had passed a short while ago zip by offering words of encouragement.

Screw encouragement, what I need was a new set of pedals. Standing in the middle of the tall grass prairie of Kansas it didn’t seem very likely that a pedal was going to drop out of the sky. I was in fact up the proverbial shit creek without a paddle. To take it one step further I was now the one legged man in an ass kicking contest.

It was time to HTFU. I could do this. Only 30 miles to the 100 mile check point

Rule 5 – Harden the fuck up" iPad Case & Skin by Nevelo | Redbubble
Need more guidance on the rules of cycling for the true hard men? Check out The Velominati.

If you made it this far in the blog, you are probably saying to yourself, “I though cycling was supposed to be fun.”

No doubt cycling is fun. If it wasn’t we would not have seen the boom in cycling this year during COVID. In fact according to an article in the LA Times urban bike use is up 21% in 2020, the Rails to Trails Conservancy has seen trail use skyrocket by 110% and swing into any bike shop and you will see quickly that there aren’t that many bikes for purchase due to the run on new bikes.

For the longest time I have belonged to the small tribe of people who know the freedom and joy a bike brings. I am happy to see that tribe grow. Within my tribe there is even a smaller tribe (though it is growing too) that gets a thrill out pushing themselves beyond what most would consider normal on the bike.

Interesting the tribes of cycling tend to embrace cliches as mantras and a way to identify each other. Whether it’s the ones I used above in my opening paragraphs or to embellish my stories post ride when I talk of “dropping the hammer” and “riding on the rivets” to bring back the break, the cliches exist. They act as a way for one fellow cyclist to identify another, to create a sense of cool and intended or not to alienate those who aren’t in our tribe.

This year I joined another tribe and quickly learned that we too have a whole host of cliches designed to motivate, give hope and encouragement. I always thought of myself and other cyclist in my tribe to be tough, but quickly learned no one hardens the fuck up like the cancer community.

Once the word is out that you’ve been diagnosed with cancer you are quickly labeled a warrior, a fighter and inspirational. For some this doesn’t sit so well and before I was diagnosed with cancer this year I often thought it felt a bit dramatic. Now, I am not so sure. Once I heard those words, “you have cancer”, I quickly found myself grabbing every cliche out there and attaching it to myself like a comfort blanket and suit of armor all rolled into one. This wasn’t a fucking pedal falling off my bike. This was my the cells in my neck and throat growing out of control and crowding out my healthy cells. For Pat Benatar Love is Battlefield for me my body was a battlefield and my tumor on my neck was literally the Battle of the Bulge.

Pat Benatar - Love Is A Battlefield - Amazon.com Music

So when do cliches help and when do they harm? For me and I think for many with cancer, they provide a bit of fantasy for us to hold on to in a time of uncertainty and uncontrollable fear. If a person can imagine themselves as some type of strong leather clad sword wielding warrior who despite tough odds is standing up to fight another day, then I say go with it if it makes getting through the chemo or another round of radiation a bit easier.

Let’s pull back and look at it from another point of view. Cliches like stereotypes can be, intended or not, hurtful and demeaning. That same person you call brave, a true warrior and an inspiration to others as they battle cancer may feel a ton of pressure an anxiety when you drop those labels on them. There is actual research that those cliches that we often think of as being supportive and encouraging are actually inappropriate and anxiety inducing.

I would like to think I am a fighter and a warrior but the reality is I can’t fight my cancer. Punching myself repeatedly in the neck is not going knock my cancer out.

In the end I’m glad I am inspiration and that you are rooting, praying and thinking about me and every other person who has cancer. I would ask that you take it one step further. Forgo the cliche statements and take action and help make a difference.

  1. Donate to cancer research
  2. “Let me know if you need anything.” act on that cliche. Most people are too proud to actually ask for help so instead do something for them without being asked.
  3. Get your vaccines and make sure your family does too. The HPV vaccine greatly reduces the risk of cervical, anal, penile and oral cancer. Flu shots not only reduce your risk of the flu but keep people with compromised immune systems safe.

Wrapping this up and probably the only thing you can think about is, “Enough of this cancer shit. Did you finish the DK 200?”

Hell yeah I did. I reach deep into my “suitcase of courage”, rode 30 miles on one pedal, got a new set of pedals from my support crew at mile 100 and then engaged in a 100 mile sufferfest while “deep in the pain locker” in to a headwind. That shit was easy compared to cancer. The Dirty Kanza has a finish line. Cancer always has a what’s next.

That’s me on the right. I caught my buddy Chad at mile 160 and we rode in together.
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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

“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.