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I Ride Bikes The Cancer Journey

Looking Back

Wow! It’s hard to believe that I am now three years out from cancer. Poking through my Google Drive, I came across this account of my attempt of bike packing the Colorado Trail in 2020, a few months out from finishing my six weeks of radiation treatment.

As I wrap up 2023 I am grateful of where my life has taken me. I’m not sure that given the choice to do it all over again that I would choose cancer, but I can’t deny the opportunities it has brought me. From a new career, meeting and making new friends and the oportunity to make a difference in others’ live, I’m pretty sure it wouldn’t have played out this way.

Below you will find a look back on one of my biggest adventures as I moved through my first year of my cancer journey.

Never once when I was purchasing the Garmin Inreach a month earlier did I think I’d need to use its “dial a friend” or SOS lite feature so soon after buying it. And yet that’s exactly what happened. I was just a few miles short of Coney Summit (13,334 feet, the highest point on Colorado Trial) and I had to contact friends and family to let them know that Rob and I were pulling the plug on our Durango to Denver attempt of the CT;  that we’d be heading back to Silverton, the next closest town.

In hindsight, my phrasing of “experiencing minor medical issues heading back to Silverton” was a bit vague and ominous. I never considered the panic it would incite within my friends and family. So much for being cheap and trying not to exceed the texting limit on my Inreach plan with Garmin.

If you ever want to know who your true friends are, send a cryptic message hinting at a crisis and see which ones immediately rally to help you. Fortunately for me and Rob, once we regained cell phone reception in Silverton, I was able to calm my wife’s fears and connect with my good friend Guillermo, who was quick to come up with a retrieval plan.

Our plan to bikepack the Colorado Trail during the summer of 2020 was not a last-minute plan spurred by COVID-19 to escape the ‘stay at home orders.’  During the summer of 2018 the Rob and I tackled Sections 1-6, as the Denver terminus is just a short bike ride from my front door. The following year we tackled the Vapor Trail and spent several days mountain biking the trails around Salida, CO in celebration of my 50th birthday.

Rob’s visits had become part of our summer routine. From his home in Greenville, SC, he would embark on his own summer vacation plans, which usually included road tripping to various national parks in the Southwest and then staying over at our place for some good ol’ fashion Colorado mountain biking. 

Unfortunately, a summer injury around that same time of year had also become routine for me. The first year I tore my meniscus. The next year I broke my foot and the following summer I was hit by a motorist while out on a ride. Twenty-twenty proved to be no exception. The dial, so to speak, was ramped up to 11 when I received a cancer diagnosis only days after the start of the New Year. It was eventually treated with surgery and six weeks of radiation treatment. At that time, somewhere on Segment 22 of the CT with Rob, it had only been a mere two months since my last radiation treatment. 

Our trip started off well enough. My good buddy, Gary readily agreed to drive us to Durango in my truck and then drive the truck back to my house in Denver, which eliminated the need for a pick up shuttle at the end of the trip, as we could go directly to my house for cold beers, showers and burritos. Gary even camped with us the night before at the trailhead and rode the first five miles of trail with us the following morning.

Like any big adventure, rolling out onto the CT was thrilling. I felt a mixture of butterflies in my stomach and adrenaline coursing through my veins. So much adrenaline, in fact, that I attacked the trail hard (or rather, as hard as one can with their bike heavily loaded down with gear and food) and quickly found myself gapping Rob and Gary. I was excited. Not only was I finally out on The Trail but my body felt strong! It surprised me because I was still dealing with the varied side effects of the radiation treatment to my neck and the back of my mouth. I had open sores in the back of my throat and my salivary glands only functioned at half-capacity, if that. Meaning, it was extremely challenging to eat food without also drinking copious amounts of water to help break down that food sufficiently enough to swallow it comfortably.

We stopped at Gudy’s Rest overlook for our first of many photo ops. We adjusted gear, chatted with another mountain biker and acknowledged how lucky we were to have so many incredible opportunities to still get outside despite COVID and the forest fires that had started popping up across CO. 

A few miles later, Gary said his goodbyes, promised not to wreck my truck and wished us well. It didn’t take long for me to realize that something wasn’t right. After we crossed and climbed out of Junction Creek, my body began to fatigue rapidly. I felt exhausted. I tried to convince myself that it was just the heat and altitude affecting me. Despite having lived in Denver for six years at that point, it still took me time to adjust to efforts at altitudes above 9,000’. I figured this was just that adjustment period and it would pass.

Despite all the high altitude riding that consumes large sections of the CT, both the north and south terminus start with plenty of tree coverage and are both at relatively low altitudes. At the top of Waterton Canyon which is right outside Denver, we were only at 5,522’ elevation. In Durango, however, we started riding at just under 7,000’, 6,983’ to be exact. Granted, if you were coming from Greenville, SC which rests at approximately 965’,  just as Rob was doing, it was easy to understand how the air could seem so thin. Fortunately, Rob was no stranger to high-altitude riding and hiking. He knew how to pace himself. In fact, as the day would later reveal, he would become my preverbal rabbit and I the very slow greyhound.

As we continued away from Junction Creek, we made a pretty bonehead mistake and didn’t bother to top off our water bottles and bladders. Several miles later we pushed our bikes out of the forest and began to cross what seemed like never-ending scree fields. I’d slurp the last of the water from my waist pack. My inability to produce adequate amounts of saliva was causing me to burn through my water dangerously fast. I needed every bit of that water. Without it, I couldn’t soften my food well enough to get it past the still very vulnerable radiation sores in the back of my throat.

Over the next four days this need for extra water would be my undoing.

To make matters worse, the food I was actually able to take in did very little to provide me adequate energy. I could hardly keep up with Rob, who was making great time across the scree fields. Note to self: Don’t make fun of Rob for all the running and hiking he does for cross training anymore. When it comes to bikepacking, they are super helpful activities.

My bike, which never before seemed so heavy, now felt like a stubborn donkey that refused to move. My mind was already creating a list of things I could do to make it lighter for my next trip. Number One: Get a lighter bike. 

Peaking out near the Kennebec Trailhead and parking lot, I realized that the section we’d just climbed may have been the hardest 4,000 feet of elevation gain I’d ever earned in my life. It was still several hours before sunset and my sole interest was setting up my tent, eating and going to sleep.

It’s hard to have a bad campsite on the CT and Night One was no exception. Nestled next to Taylor Lake, we watched the sun slide behind the mountains, bathing the Colorado Trail with shifting shades of orange and yellow. 

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Once I got in my bag, I expected to fall asleep quickly. Instead, the twitching of my aching legs, matched by the nervous thoughts that clambered around in my head, kept me up for hours.

Had I overestimated my recovery and health? Should I even be out there? Rob and I were supposed to do 40 miles that day. We’d barely done half of that. How were we going to finish the trip?

Surprisingly, despite all the worry and doubt, I finally drifted off to sleep and slept only like you can after a hard ride and a big meal. I woke in the morning feeling fresh and ready to go. 

It was a slow start (we still hadn’t gotten into the rhythm of packing up camp quickly) but we finally threw our legs over our bikes around 9am. As our shoes clicked into our pedals, several deer in the meadow raised their heads to look at us in a way such as to ask: “Why are y’all going that way? Only the bighorn sheep in these parts are dumb enough to go up that trail.”

The climb/push/drag-a-bike over boulders away from Taylor Lake did little to dampen our enthusiasm, though. We were headed up, which meant that, at some point, we’d get to go down. We’d then do some sublime alpine riding as we headed toward Engineer Pass, our ultimate destination for the day. 

Despite our early morning enthusiasm, we barely managed half our mileage. My old friend, Self Doubt, was creeping back into my brain. We’d ridden strong and kept our breaks short, but it was two days in and we were falling considerably far behind schedule. The southern start of the CT was proving to be much tougher than I’d anticipated. The last time I’d ridden that area was on a hut-to-hut trip booked through  San Juan Huts and I was on a lightweight cross country bike which only carried extra clothes and a day’s worth of snacks. 

No worries, right? Tomorrow was a new day. We would roll over Engineer Pass and down into Silverton, which would be our first detour around a wilderness area. 

The ride to the base of Engineer Pass went quickly and smoothly. Refilling bottles at the creek, my eternal optimism began to creep back despite the fact that Engineer Mountain still loomed above us. I remembered the ride down to that very creek from six years prior. It had been fast, furious and out of control at times. I kept telling myself that the climb up probably wouldn’t be that bad. If I could ride down it, then surely I could ride up it, right? 

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It was at  the top of the pass that I’d had my first thoughts about pulling the plug on the whole thing. The idea of rolling into Silverton, renting a room, eating pizza and drinking beer at Avalanche Brewery seemed like the best idea in the world. I didn’t share this thought with Rob. I knew he’d be down for the pizza part because that was all he’d talked about all day. In his mind, we should refuel and then push on. I, however, was thinking more like drinking beer, eating pizza and then curling into a ball for sleep.

By Day 3 it had become painfully clear to me that my inability to take in enough food was slowly causing my body to eat away at itself. During radiation treatment, one of the tenets of taking care of yourself is to try and eat to maintain your weight. In my case this was critical to the accuracy of my treatment. Each morning I would lay on a padded steel table where my head was fitted with a custom mask that was bolted to the table. The mask ensured that I did not move while the radiation machine passed overhead.  The grid pattern of the mask served as an alignment tool for the technician. She made sure the radiation was pinpointed only at the areas of my head and neck that had been infected with cancer. This mask-and-machine combo was proof of a huge advancement in the treatment of head and neck cancer. Older treatment techniques were more like carpet bombing and they just blasted the entire head and neck with radiation. While it was effective, the side effects were often worse than the cancer. Patients experienced tooth loss, bone degeneration and massive hair loss in the treated areas. There was also severe damage to their skin and salivary glands.

I was prescribed a dental plan consisting of fluoride treatments. The radiologist carefully directed the beams, as it would greatly reduce my chances of losing any teeth. In addition, the skin damage was reduced and the hair loss was minimal. I only had a small bald patch under my right jaw line. I remember the peeling and flaky skin, as well as the falling hairs. 

My big takeaways from the treatment were under-functioning salivary glands and a massive fifteen pound weight loss. Raw and open sores in my throat made it incredibly difficult to eat. I ate only the softest of foods. If, however, that food had the slightest bit of acidity, it felt like gasoline running down the back of my throat. 

Once the sores healed I still had large crater-like pits in the back of my throat, which proved to be the perfect place for food to get stuck. Eating the most basic mountain bike staples like Clif Bars and PB&J sandwiches was a considerable undertaking. Each bite required that I take an extra sip of water just to break down the food enough to allow it to pass over the craters in the back of my throat. 

I hadn’t regained any of my lost weight and, considering that I’d been 6’2’ and only 170lbs, I really hadn’t had a lot to give away to begin with. Now, at 155lbs, I looked like the four- time Tour de France winner Chris Froome, except I wasn’t all muscle and sinew. I was pretty much just sinew.  

We refueled in Silverton and discussed the coming sections of the CT and how much food we’d need to carry. The next resupply option wasn’t for many miles and it included a long 16 mile plunge into Lake City, which also meant a long 16 mile climb to get back to the CT. No, thank you! We stuffed our bags with food and hoped it would be enough.

We planned to roll out of town and find a campsite somewhere along Cunningham Creek, which would allow us to get the big climb up to Stony Pass out of the way first thing in the  morning. It was at Stony Pass that we would  rejoin the CT, as our side trip into Silverton consisted of a mandatory detour around the Weminuche Wilderness.

I was looking forward to the climb, despite hearing that the road up to Stony Pass was incredibly steep. I liked fireroad climbing because it allowed me to settle into a steady rhythm. We quickly learned, though, that there was no adequate rhythm. That is, except that of your heart trying its best not to jump out of your chest. The continuous stream of ATVs helped drown out the sound of my laborious breathing. I couldn’t blame the passengers for looking at us like we were crazy.

Eating lunch atop Stony Pass, we discussed the rest of the day. Despite just finishing that brutal climb, Rob and I both felt pretty good. The last couple of days, however, made us avoid making any definitive statements as far as the number of miles we’d ride that day. Instead, we decided to just let the day unfold as it would. 

Our new Zen approach to riding paid off and we enjoyed some of the best high alpine riding Colorado has to offer. Unfortunately it wasn’t all riding. As is typical when riding in the Rockies, there’s always going to be a fair share of hike-a-bike. It was the hike-a-bike sections that, again, I really felt my body failing me. As Rob plodded ahead of me, I used a trick I’d heard that high altitude  mountaineers used: Take a couple of steps, breathe, rest, and repeat. It helped and once I got back on the bike I did my best to make up for lost time and trade places with Rob.

Our day of Zen riding also ended up being one of our shortest in terms of mileage. By the time we arrived at Cataract Lake, it was obvious we were both suffering and, with plenty of spots to camp, it seemed like the right place to call it a day. Our view of Cataract Lake was incredible.

Before Colorado dropped another epic sunset on us, we watched several large (are there any other kinds?) moose move across the field below us. Their large droppings served as a clear reminder to us that the large beasts owned the land and walked wherever they pleased. We were closer to the trail than the lake, though, so I felt pretty confident that I wouldn’t wake to a moose stepping on me or my tent.

Our campsite was at 12,000’, which meant we were in for a very cold and frosty night. We each bundled up in all of our clothing, including our rain pants and jackets. Still though, I was freezing cold all night. By the looks of Rob the next morning, he hadn’t slept much better.

Now I have no problem getting up early when I am in the comfort of my own home, wrapped in my robe and drinking cappuccinos. Our predawn awakening that morning was rough! I did my best to mimic my routine at home and stayed wrapped inside my sleeping bag and inside my tent. I wiggled out just far enough to boil water and make coffee under the vestibule. 

Rob was much hardier than I. He was already up and busy packing gear. We’d agreed to an early start so that we could maintain our schedule. Once again, though, Rob patiently waited for me to hastily stuff my gear into my bags and try my best to stuff oatmeal into my mouth. I think the fact that Rob is an engineer has something to do with his patience. Realizing (from an engineering perspective) that Rome wasn’t built in a day and that I couldn’t be expected to  roll out on time, are two of life’s truisms that Rob had come to accept. 

Once my gear was stuffed and ready, we started pedaling and enjoying the sunrise. 

It didn’t take long for me to realize that I was done. All the insufficient calories, compounded by the cold and fitful sleep I’d had the night before, finally caught up with me. I was done. I turned to Rob and let him know that I needed to pull the plug. He hardly seemed surprised.

What causes a person to quit something? I know for me there are certain things that are a lot easier to quit than others. Quitting meat was easy. Coffee not so much. In fact, I will quit coffee when you pry my cold dead fingers from the handle of my mug. 

Bike rides and races are hard for me to quit. I once rode with and without a working derailleur, walked and carried my bike for sixteen hours just to finish at  Unbound Gravel (formerly the  Dirty Kanza 200) and can count on one hand the races I have DNF’d.

I quit racing bikes a couple of years ago. The part of me that loves the pre-race butterflies, the bumpin’ of elbows and the mad dash toward the finish in a lowly Cat 4 crit had been quashed by one too many close calls and a couple of hard kisses (followed by stitches) with the concrete. That all was easy, but this was different. I struggled with the feeling of failure. The idea that I had set a goal of riding the entire Colorado Trail just a few months after ending my cancer treatment was tough to swallow. This trip was supposed to be not only for me but a way of saying to friends, family and hopefully complete strangers, “Look at me. I am better. I kicked the shit out of cancer. Don’t worry if you’ve been diagnosed with cancer, you can beat it too!”

It wasn’t working out that way at all, though. I was hang-dog-whipped and there wasn’t anything I could do about it.

Several weeks later my perspective began to change. I slowly came to realize that I hadn’t failed; my body just hadn’t healed yet. The fifteen pounds I’d lost wasn’t just my beer gut and winter fat. A lot of it was muscle and the power to move the bike forward. Even less telling was the amount of energy my body was using to continue recovering from the treatment. 

The  only plus to our backtrack to Silverton was the insane downhill coming off of Stony Pass. Our big and meaty 27.5plus tires weighted down with our gear kept the bikes frimley glued to the loose chunky dirt road that had given us so much trouble the day before. More than one ATV or Jeep driver was surprised as we came sailing by, as they crept slowly through the tight switchbacks. 

The downhill was so fun and easy. If only all of the CT was downhill! 

Fantasy aside, we pedaled back toward Silverton discussing our next move. It was the weekend and we knew our chances of finding a hotel were slim to none. That meant another pedal to somewhere outside of town to camp. Even this was going to be tough. Silverton’s a haven for outdoor types and the dispersed camping outside of town was overflowing with RVs and campers.

Once we got cell reception, we realized that the calvary was already on their way and that camping wouldn’t be necessary. My good buddy Guillermo was already en route from Denver to pick us up!

With six hours to kill before he arrived, Rob and I stuffed our faces with pizza and ice cream. Now that I had a continuous supply of water and yes, maybe a beer or two, it was much easier to chew and swallow food. I made up for lost time and poor trail dining. 

Despite the cloud of having to come off the trail, the ride home with Guillermo and Rob was a blast. It’s amazing what good friends can do to help lighten the mood. We also got an update from Guillermo on the forest fires raging across Colorado. The path along the CT would have not taken us directly into a fire but we would have spent at least a couple of days riding through areas of heavy smoke. No doubt that would have wreaked even more havoc on my tender throat. I still wasn’t crazy about my decision to pull the plug, but at least the ongoing circumstances were making it seem more and more like the wiser decision.

As we got closer to Denver it became more and more obvious that the fires were no joke. The entire Denver sky was a bizarre Marcian orange. Rob continued to be a good sport and was flexible, as we shifted our outdoor plans to indoor plans for the rest of his visit.

There’s no doubt that Rob and I each would have preferred to have stayed on The CT but we made the best of the situation that challenged us. I’m sure Rob wasn’t planning on spending so much time at local museums but, then again,  a little culture never hurt anyone. We also managed a few early morning outside adventures before the smoke settled in for the day. This included hiking my first 14er. Yep, seven years in Colorado and I’d only been to the top of a 14er via train (Pikes Peak) and by bicycle (Mt. Evans). The view at the top of Mt. Bierstadt was cool for sure, but the toll it took on my knees as I hiked back down had me pining for my mountain bike. 

Closing the books on the summer of 2020 was a bit disappointing for me. With the past six months of perspective, however,  I now understand that just being out there on the trail was an enormous win in itself! The CT isn’t going anywhere and one day I’ll go back. Over the years, I’ve spent enough time on it to bookend the north and south terminus, as well as a few pieces in between. I’ll be back to knock it all off in one go.

Categories
The Cancer Journey

I’m so tired of thinking about cancer

Today was the one year anniversary of the Head & Neck Cancer Support Group I participate in every month. It’s strange how I respond to this group. They keep the insanity in my brain sane.

Most everyday I think about cancer. My cancer in particular. Almost two years post treatment, several all’s clear PET scan later and I still think about it.

I think about it when I’m massaging and stretching my scar that run along the right side of my neck or when I go to shave and realize there’s no facial hair along my right jawline for me to even shave.

I curse it when I wake in the middle of the night to search for a lozenge. My mouth sand paper dry due to underperforming salivary glands.

“What if Lance the Lump comes back and invites his friends, too?”

I am just tired of thinking about it. I am over cancer interrupting my thoughts and daily routine.

I’m so done with thinking about cancer that I haven’t written in this blog in months because the idea of writing about cancer just leaves me tired.

The monthly H&NC Support group is different. All we talk about is cancer. The long term side effects of our treatments. The trouble we have swallowing. We share tips on good dental hygiene to keep our teeth healthy after weeks of radiation treatment. Cancer. cancer. cancer and more cancer.

Oddly enough I don’t mind talking and thinking about cancer with this group. Misery loves company or maybe “a little perspective, like a little humor, goes a long way.”

Categories
Health and Wellness The Cancer Journey

Fuck this Pity Party

Somedays I resent being a #cancersurvivor, a #cancerthriver, and #cancerwarrior.

The suggestion that I did something extraordinary rubs me the wrong way. Despite what the media, Instagram and the American Cancer Society want you to believe I am no different than anyone else trying to get by in this world.

I’m not above using cancer hashtags to promote my Instagram account and I see the hypocrisy in my anger, but I’m still pissed.

I did not draw my trusty sword or put on combat gear to fight cancer. I did nothing more than what anyone of you would do when sick. I listened to my doctors, took my medicine and got plenty of rest. Cancer is like having the flu but instead of chicken noodle soup, it’s lots of radiation and the hope you can actually keep the soup down.

I got lucky.

I got lucky that my cancer was discovered early in Stage II. I got lucky that the treatment methods for head and neck cancer has advanced by leaps in bounds over the last ten years.

I was fortunate that I had a job that afford me health insurance and the time off to seek treatment and concentrate on my health and recovery.

Why resent such a noble titles as survivor, thriver and warrior?

Because when you attach cancer to the front of each it evokes pity and sadness from your audience.

I don’t need your pity. I need you to get angry, scared and ask what can I do so I and my loved ones don’t get cancer.

I need you to be the warrior.

I need you to stand up and say this is enough.

I need you to make sure your loved ones get their HPV vaccines.

I need you to stop smoking.

I need you to exercise more and eat more fresh fruits and vegetables and cut down on that crap that is passed to you through your car window that you’ve been led to believe constitutes a meal.

I need you to wake the fuck up.

I need you to turn out the lights as you leave the pity part and make sure the door doesn’t hit you in the ass on the way out.

Home

https://www.cancer.org

Categories
Music The Cancer Journey

Can’t Get There from Here

Music plays constantly in my life as I am a firm believer in creating your own soundtrack as we move through this world. This collection of musings is on various songs that help shape the soundtrack of my life.

Say to someone, you love Southern rock and they will think you are talking about the Allman Brothers or Molly Hatchet, but for me the Southern rock that defined my teenage and college years came straight out of Athens, GA with bands like Kilkenny Cats, Pylon and the venerable REM.

More than any band, REM has played in the background of my life from love and heartache to long drinking sessions with friend on the front porch.

Like warm filling comfort food there is no time bad time for REM.

The opening lines of Can’t Get There From Here…

When the world is a monster/Bad to swallow you whole/Kick the clay that holds the teeth in/Throw your trolls out the door

have always rang true to me. Maybe for the the simple fact that I could actually understand them. Michael Stipe is not known for singing clearly and often mumbles out words as if his mouth was filled with boiled peanuts.

This past year the words have taken on more meaning in a simple metaphor of cancer is that monster trying to swallow me whole and I will not go softly. Kicking and throwing that troll out the door.

Four days ago I went to for my annual monster check up via a PET scan. I am still waiting for the results but either way I am ready if they monster returns.

To have cancer back in my life unnerves me and makes my stomach dance with butterflies.

“If you world is a monster/Bad to swallow you whole”

So here I wait with my foot at the ready to kick back ’cause I won’t be swallowed whole.

Categories
The Cancer Journey

Return to nOrMal

Eleven months in and I thought I would be normal. Normal like, no more cancer, cured, doing all the stuff I used to do, no side effects.

Just normal.

There is no normal after cancer. You can’t go back no matter how hard you try. Thomas Wolfe was right, “you can’t go home again” what you thought was home has been torn down. All you can do is try to rebuild from ashes of memories.

I try to remember what eating and tasting a peanut butter and jelly sandwich was like. That was my jam (pun intended) long before Leborn James and the NBA made eating PB&J’s cool.

I now have to plan before eating this delicious treat. Without functioning saliva glands two slices of bread, a couple of tablespoons of peanut butter and a gooey gob of strawberry preserves is too much for my barely functioning saliva glands. A large glass of water plate side is necessary. The water provides a substitution for lack of spit in my mouth. With each bite a swish of water, chew, swish and swallow. Like most of my food the taste is there but muted.

“Be thankful for what you have; you’ll end up having more. If you concentrate on what you don’t have, you will never have enough” Oprah Winfrey

Obviously Oprah never tried to eat a peanut butter and jelly sandwich without her salvia glands. No matter how thankful I am for the sandwich in my mouth, it won’t make it any easier to chew and swallow.

I get it. I’m lucky. Fortunate. Still alive.

But I’m also pissed. I doesn’t have to be like this for people who come after me. When I look around and see people rejecting science because of celebrity “experts”, politician putting careers before people and debating “health care for all” while no one bats an eye for a military that serves a few I feel hopeless and defeated.

We spend close to $1 trillion dollars a year on a military to keep our citizens safe and protect our boarders. Why not apply the same logic to keeping each other healthy and productive by providing affordable health care to everyone. Why should our normal in staying healthy and have access to quality medical care differ based on income. Normal in our current health care system sucks for so many.

I wish they could try on my normal.

Literally, you should try on my normal, because every night my normal involves putting on a vest and head gear. A vest and head piece that is filled with pneumatic chambers that pulse and massage for 34 minutes. Relaxing yes, but this is not some evening trip to the spa.

This my life, not a getaway with soy candles and trickle music performed by some Kenny G mother fucker. If I don’t put on this vest and head gear nightly after brushing my teeth as well as applying a mouth guard full of fluoride treatment to keep my teeth from separating from my face. There’s a good chance my neck will bulge with lymphatic fluid and my teeth will drop out from my mouth like pennies from heaven.

Yep, I’m not thrilled ’cause this shit sucks. Night after night this is my routine until I die.

Here’s where I get really petty. I miss coffee and beer.

I still drink both but miss them at the same time.

I use to be hip as shit. Coffee snob, buying coffee beans that cost $20 a pound. Grinding ’em and brewing them up in my stainless steel home espresso machine, and talking about hints of vanilla and undertones of chocolate.

Now I might as well being grinding up monkey turds and pulling shots of espresso because it all tasted the same thanks to taste buds that were fried with six weeks of radiation.

Yet, I keep on grinding and pulling with the hope that I’ll be able to taste the next shot.

A really crappy pour from the looks of it, but tasting it I won’t be able to tell the difference

Tell me I should be thankful because at least I have my health and my cancer is in remission and I’ll punch you in the face.

I know and realize that, but that’s not the point. We bicker and fight about “health care for all” yet can’t even cure or eradicate cancer for the people who can afford to get sick, much less those that can’t. That’s fucked.

You’ve got money and health care? Awesome, step right up, we might be able to prolong your life. No promises.

No money or health care? No problem your treatment won’t be top notch but the bills you leave you family will be huge. No promises other than the bills will live on as a way for your family to remember you.

Back to the important stuff.

I miss beer. I am not supposed to drink as it inhibits the healing from my radiation treatment. Fair enough, but maybe what I miss is really tying one on.

I miss going to a show with friends, getting drunk and raising hell. Thanks COVID. Thanks cancer. You two make a shitty no fun sandwhich.

Just me and a few thousand friends at Red Rocks Amphitheater getting ready to tie one on and have a good ole time.

While the world spins on and continues to drink their way through COIVD, I continue to search for the new normal.

Normal now means I have a beauty routine.

Vitamin D cream in the morning followed by a daily application of sunscreen to protect my eight inch neck scar and newly sensitive skin.

Evenings are more vitamin D cream and a CBD balm across the scar. Placebo or not the CBD seems to help relax the tension in my neck cause by the scar tissue and makes the Zzzz’s come a little easier at night.

Going to sleep is the easy part. The hum of the humidifier lulls me to sleep. The kitty litter mouth wakes me two or three times a night. I get up because the humidifier is not enough to make up for the missing salivary glands. I drink a liter of water a night from the time I go to bed to the time I wake up, but that is still not enough. I get out of bed twice a night to gargle with Biotene or spit in a bottle as I like to call it. It’s not enough. The dryness in my mouth causes small sores to form along the edges of my tongue. I know they are not cancerous, but part of normal “after cancer” is always the what if?

Getting injected with radioactive dye ever year for a PET scan shouldn’t be part of anyone’s normal.

Follow up doctor visits

Blood work

PET Scans

Lympatic therapies

Nagging thoughts of “What ifs”

My new normal sucks.

Sorry, Oprah, your words of wisdom feel a lot like they are coming from someone who can still eat peanut butter and jelly sandwiches with relative easy.

To be thankful for what I’ve got would mean that I am okay with the next generation of cancer patients learning to live with their new normal.

Wanna rewrite what normal is?

Parents ensure your children are getting their vaccines on time. Including the HPV vaccine. Ten, twenty years from now you don’t want to pick up the phone and hear your grown child on the other end telling you they have cancer due to their exposure HPV.

Demand better from your politician. They are supposed to be public servants. Demand they provide the means to better health care for all not just those that can afford it.

Redefine your normal now. All that shit you hear about crappy diets, lack of exercise, and stress in our lives contributing to poor health, a rise in cancer rates and shortened life spans is true. Don’t be like me and wait until you have cancer to evaluate your life. If you are working and living your life in a way that is detrimental then maybe you are going about it all wrong.

Redefine your normal now before cancer does it for you.

Categories
The Cancer Journey

Boys Don’t Cry

I tried to laugh about it
Cover it all up with lies
I tried to laugh about it
Hiding the tears in my eyes
‘Cause boys don’t cry

— Robert Smith/The Cure

I spent the first fifty years of my life trying not to cry, because boys don’t cry.

That is not to say I never cried. I cried when I got spanked as a little kid. Yep, I was spanked as a kid and for better or worse I seemed to have come out okay.

I didn’t cry when I broke my leg in two place during a high school soccer game.

I did cry why when my dog, Flea, died.

I cried again when my dog, Boo, died.

I didn’t really cry when my dad died. I did get really drunk. And then about three weeks later I cried while sitting in my living room by myself.

But for the most part, I haven’t cried that much over the last fifty year. Again, boys don’t cry.

That is until I got cancer. I didn’t cry when I found out I had cancer. In fact I worked the rest of the day and then went home and told my wife I had cancer. She cried.

Somewhere along the way after I got cancer, I gave myself permission to start crying. I still haven’t cried because I have (had) cancer, but I did cry when I had to tell others I had cancer. Seeing the pain and hurt on friends and family’ faces was too much. Screw you Robert Smith, boys do cry.

Robert Smith/The Cure 'Boys Don't Cry' Sticker | Etsy

Now that I have given myself permission to cry it is was easier than not crying.

Giving myself permission became extremely important after my surgery and during my radiation treatment. These are the things I gave myself permission to do…

  1. Feel shitty. No more tough guy and suffering through it. When I feel like crap now I acknowledge it and usually go to bed or get on the sofa to allow myself to heal.
  2. Worry. There’s a lot of stuff to worry about when you have cancer. And people who say, “Don’t worry. It will all be okay” are generally full of shit and don’t really know that much.
  3. Sleep. See number 1 above. Sleep is often the magic bullet to feeling shitty. 2020 the year of COVID, cancer and naps. Naps for the win!
  4. Share my feelings and be vulnerable. My wife and sister say I have gotten much better at this. They are both smarter than me so I will take them at their word. I think this blog is partially to thank for this.
  5. Do what feels right for myself. At the end of the day I had to own my own health and wellbeing.
  6. Be scared. This is like worrying on steroids.
  7. Accept and Trust. At some point I had to stop googling and reading about cancer. Second guessing everything was not helping. I had to trust my doctors and their decisions. I had to learn to accept help from others.
  8. Cry. Because even with permission to do all of the above sometimes boys do need to cry.

Categories
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.