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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
Music

The Saddest Song in the World

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.

I am not sure when I first hear the song, Love Will Tear Us Apart, but am pretty sure that it was when I was hanging out in high school with my dear friend, Susan. Susan was all things British (even though she’s South Georgia small town like me) and in turn all things cool. She was an encyclopedia of British music heavy on the 80’s synth pop goth, NME magazine and even a stent in an English boarding school. Like I said all things cool.

With out sounding too old, my time in high school was pre-digitization of music so spare money was spent on vinyl and using the local college radio station playlist as a running checklist of what needed to be added to the record collection.

My own collection ran the gamut from college radio staples like REM and The Replacements to the hard charging AC/DC and Iron Maiden. Susan’s collection leaned heavily to the other side of The Atlantic with plenty of vinyl from The Smiths, Siouxsie and the Banshees, New Oder and of course the band that spawned New Order, Joy Division.

The first choppy strumming of the guitar with piercing synthesizer lays down a haunting background for the opening vocals.

When routine bites hards and ambitious are low/And resentments rides high but emotions won’t grow/And we are changing our ways, taking different roads/Love will tear us apart

From here, the saddest song ever continues in a downward spiral much like the relationship that Ian Curtis describes in a voice that sounds and feels as forlorn as the lyrics.

If the second stanza…

Why is the bedroom so cold turned away on your side?/Is my timing that flawed, our respect runs so dry?/Yet there is still this appeal that we’ve kept through our lives/Love will tear us apart

doesn’t rip out your heart, then consider this.

Lead singer, Ian Curtis, suffered from both epilepsy and depression and was dealing with a failed marriage. He would kill himself by hanging a few months before Love Will Tear Us Apart was released as a single.

So why even listen to the saddest song ever?

For me it is a type of affirmation. There is no joy in others’ pain and suffering but knowing that others hurt and feel in the same way provides comfort.

The song itself provides no comfort, no resolution and little hope. Even though the song feels hopeless knowing some of the backstory of what becomes of Joy Division after Ian Curtis’s death provides a bit of a phoenix from the ashes story.

The remaining members of Joy Division would go on to form the band, New Order. The dance heavy electronic music of New Order would help to provide a more upbeat antiseptic to the saddest song ever.

At the end of the day I often find myself drawn to the saddest songs. Some where deep in their anguish and sorrow I find hope and happiness.

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
Health and Wellness

Social Media, Dancing with the Devil

Like many people at one point in my life I got on the wagon and took a break from social media. In fact I went over two years without posting to Facebook. Last year changed that for me. Sitting at home recovering from surgery, then six weeks of radiation treatment and stay at home orders due to COVID gives a person a lot of idling free time.

Since then, I have been investing in having a healthy relationship with social media, mainly Facebook, Instagram, LinkedIn and Twitter. No doubt TikTok and Snapchat have their place but I am pretty sure the world does not need to see me, a 52 year old man trying to do the latest dance steps. At the end of the day my goal is to make social media enhance my life not take it over.

I won’t spend a ton of time on the evils of social media but like so many things– gambling, alcohol, drugs and even shopping there is an addictive quality to it. The question is how to dance with the devil but not get roped into to going to Hell.

L0026618 The History of Witches and Wizards, 1720 Credit: Wellcome Library, London. Wellcome Images images@wellcome.ac.uk http://wellcomeimages.org Witches dancing in a circle with the devil. The history of witches and wizards… Published: 1720 Copyrighted work available under Creative Commons Attribution only licence CC BY 4.0 http://creativecommons.org/licenses/by/4.0/

Research has shown that we can suffer from feelings of dissatisfaction and frustration with our own lives when we see post and pictures from friends that can lead us to perceive that their lives are better than ours. I know, I’ve been sucked down that rabbit hole. Obsessing over getting a new bike or wondering if I need to trade in my car for a newer model, the seed being planted from just scrolling through friends’ post about their latest acquisition.

The list of ills goes on and on. I found a great blog post from Iraylo Durmonski on many of the negatives as well as how to make better use of social media. He hits on many of the same points that I will cover below.

So why the big change and the re-embracing of social media. Blame it on the two big C’s- COVID and cancer.

Just as the world was shutting down for the year in the spring of 2020, I found myself at home recovering from a bilateral neck dissection. The first in several steps to treat a head & neck cancer that I had been diagnosed with at the end of 2019.

So what’s a fellow to do when confined to the couch under doctor’s orders. Facebook & Instagram became a quick an easy way to share what was going on and how my recovery was going. Phone calls and emails from friends and family are awesome but telling the same store and providing the same information over and over is down right exhausting.

This was my first big moment of realizing what a great tool social media can be. Face to face visits weren’t possible but reconnecting with friends on Facebook provided a great boost to my spirits and morale. The trick was and still is knowing when enough is an enough.

I don’t have a magic ratio formula to tell you that you have X amount of minutes per day that you can spend clicking likes and posting pictures from college that you found in an old photo album while cleaning off your bookshelves. I may have spent several days last summer doing this and to be honest it was a blast. Reading friends comments and taking a walk down memory lane was just the boosted I needed to get me through a rough part of my recovery from surgery.

It has now been a year since I took my toe out of the water and took a deep dive into the social media pool. Along the way I’ve developed a list of rules for myself that I feel have allowed me to have a healthy relationship with social media.

  1. No trolling unless you want people to think you’re a D bag. This is a great way to get unfollowed and lose friends along the way.
  2. If you are getting your news and facts from social media you may want to rethink that practice.
  3. Avoid debating politics and religion. Trust me you are not going to change my mind and I don’t believe I’ll change yours. Let’s save our energy for something more productive like debating whether or not Taylor Swift is the greatest song writer of her generation.
  4. Only positives. This goes along with trolling but basically I follow the law my mom laid down long ago for me, “If you don’t have anything nice to say then don’t say anything at all.”
  5. Get rid of deadweight. Cut loose your “friends” who are trolls, constantly post fake news and demonstrate that they are one or more of the following… racist, homophobic, misogynist, xenophobes or just general D bags. You wouldn’t hang out with them in person why give them your time on social media.
  6. Use it as intendeded. Look at it this way, you wouldn’t go to your friends home and just randomly flip through their stuff. Why do the same online by aimlessly flipping through others’ posts and pictures. Take the time to be mindful and full of good intentions. Use messenger to reconnect with an old chum from school, write a review about a positive experience you had at a local business or maybe plan a large picnic and invite your friends from online to show up and actually interact in person.
Categories
Health and Wellness The Cancer Journey

Sitting Still at 1000 Miles per Hour

It’s day 10 and I can’t decide if I hate Jeff Warren or is he like one of those popular kids I use to pretend to hate in high school, but in reality wanted to be like and liked by them. And then there’s his girlfriend, Tamara Levitt, with her calm sexy voice dropping pearls of wisdom at the end of each session. Together they are the bane of my early morning existence.

I so want to sit down and start my day with twenty minutes of quite energizing meditation. Something that will take me through the day in a Zen like state that has others saying to themselves, “he’s like Outcast, just the coolest motherfunker on the planet”

I want to be Jeff, cool and in control, with a touch of Tamara, who always has just the right antidotal story to illustrate a point. Instead my brain and thoughts are a jumbled garden with bees alighting on flower after flower never taking the time to settle before they are off to the next thought.

I’ve never actually met Jeff or Tamara and despite my time with them in my head over the last ten day, I have no idea if they are boyfriend and girlfriend.

The last ten days sitting on my living room floor in the last of the night’s darkness at 5:30am with these two in my ears coaxing me towards a calmer more enlightened me have been unexpectedly hard. So far I’ve learned about equanimity (I don’t have it), my homebase, which feel likes a house party, and popping out of my thoughts with inner smoothness. I hear it, understand it but I can’t get it.

You only have to try and mediate or just try to sit still with your eyes closed for ten minutes to realize that mediating is hard work. Jeff reminds me of this daily, that mediating is about using brain muscle we didn’t know we had, before he puts me through another round of exercises that leaves my gray matter mushier than when we started.

I’ve come to befriend Jeff and Tamara via the Calm app. With their help and too hold myself accountable, I have paid up front for a whole year of this subscription based service that is going to teach me to meditate and in turn find a new inner calm.

That may sound a bit cliche and hokey but it’s not far from the truth. The last year I’ve spent a lot of time with my own thoughts as I laid around recovering from surgery, stretched out on a table getting blasted with radiation or just walking the neighborhood trying to get my strength back. All of this down time has helped me realize is that I don’t know myself as well as I thought I did. Crazy, after 52 years, I don’t know myself completely. I am hoping that a deliberate dive into meditating will help me get to know me better.

It’s a process. I get it. Ten days is just a drop in the bucket, but come on brain, calm down and throw me a bone.

Whoooaaa! What just happened?

It’s the next day. I stopped writing the above because trying to explain mediation, much less understand it on a personal level and how to do it correctly was making my brain hurt. Yet, some how today, early this morning it all clicked. Just for a second but somehow on day 11 I meditated (or at least what I think it did) for a split second and then it was gone like a tendril of smoke I could see it drifting further and further away from me until the wind broke it in to a thousand indistinguishable particles.

The rest of the meditation session was not nearly as fulfilling as my mind kept wandering (according to Jeff and Tamara wandering is part of the process as you should acknowledge it and gently bring yourself back to your home base) back to that split second.

Imagining putting together that split second with another split second and another and evidentially those seconds become minutes have me excited for this small break through that happened while seated on the dog bed in my living room this morning.

I really don’t hate Jeff and Tamara but like anyone that pushes you into a state of discomfort there is a certain amount of resistance you have to that person as they push you. Once the break throughs happen the resistances become a challenge.

“Is that all you got?” becomes my mindset.

And yes I know that meditation is not a competitive sport but if the push to do better moves me to a place of quite contemplative deeper and better understanding of myself I’ll take it.

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.