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

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
The Cancer Journey

An open letter to my wife, family and friends

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

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

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

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

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

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

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

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

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

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

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

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

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

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

With heart,

Jay

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

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

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

https://www.mayoclinic.org

https://www.cdc.gov

https://www.cancer.org

Categories
The Cancer Journey

this is not how i die

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

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

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

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

And here I was, flying down the gravel road.

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

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

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

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

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

How do I die?

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

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

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

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

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

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

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

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

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

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

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

I am fortunate.

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

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

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

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

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

Categories
The Cancer Journey

The Worst Day Ever Might be the Best Day

The words.

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

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

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

It was nothing like that. 

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

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

Nothing else.

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

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

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

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

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

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

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

I’ve got to kick this cancer.

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

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

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

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

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

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

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

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

“Will I go bald?”

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

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

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

“What? I don’t know what to say.”

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

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