Category: The Cancer Journey

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
The Cancer Journey

Finding Ned

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

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

Really, though, what is it?

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

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

This is how the hike plays out:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

NED, 1o Miles

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

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

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

NED!

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

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

That is a cancer journey.

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.
Categories
The Cancer Journey

A letter to Dave

Hey Dave,

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

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

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

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

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

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

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

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

So why are we friends?

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

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

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

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

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

For that we are all grateful.

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

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

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

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

Your cancer comrade,

Jay

Categories
The Cancer Journey

An open letter to my wife, family and friends

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

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

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

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

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

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

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

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

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

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

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

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

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

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

With heart,

Jay

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

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

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

https://www.mayoclinic.org

https://www.cdc.gov

https://www.cancer.org

Categories
The Cancer Journey

“Laughter is the only medicine that comes without side effects” Shannon Alder

Eeeeeeek….. the piercing scream of the small child shattered the quiet murmur of the grocery store. Even the soft 80’s rock being piped in from the speakers of above seemed to pause for a heartbeat.

“Mommy! It’s the cereal monster!”

“Shit” I was in the cereal aisle. Cancer and COVID hadn’t killed me but all of sudden I was in danger of being ripped to pieces by a cereal monster. Whatever the hell that was.

“Caitlyn! Hush! It’s not nice to point.” I heard a frantic mother admonishing her child. Looking to my left I could see the exasperated mother quietly trying to correct her child while pushing her young stubby arm down. I realized too late that the child was clearly pointing at me.

Instinctively, my hand went to my mask-covered face and touched the visible scabs and dermatitis which were left by weeks of radiation to my throat and face. There’s no doubt that the dried scabs resembled bloody cornflakes. From a vampire’s perspective, I probably looked like a a heaven-sent breakfast. To a small child, however, I looked exactly like the Cereal Monster. The irony of the situation did not escape me. Looking like I did, I was indeed standing in the cereal aisle, directly in front of the corn flakes.

This may or may not be a photo of me at the end of my radiation therapy.
Photo by Moviestore/REX/Shutterstock (1631865a)

I toyed with the idea of raising my hands above my head in my best Lon Chaney* impression and advancing on the still terrified child and her mortified mother. From a monster’s perspective, the child was worth terrorizing before consuming. She had obviously been plumped for maximum monster diet satiation from a steady diet of sugary cereals. In the end, though, I let her scurry off with an oversized box of Lucky Charms clutched in her grubby hands. Truly, it was her lucky day to have escaped the Cereal Monster.

I’ve been noticing the side effects of my radiation treatments for several weeks but, like anything we live with, we tend to forget about or at least push them to the back of our minds. There’s no use dwelling on what you can’t change, right? For others, though, coming across my new radiation enhancements was a bit startling.

I actually felt pretty fortunate, as many of my side effects didn’t show up until late in my treatment. The ones that did were likely to go unnoticed. The splotchy hair growth on my face was a great example.

One month into the COVID “Shelter at Home” order I didn’t look much different than many of the zombified dads I saw trudging around my neighborhood with kids in tow. There are only so many times you can mow your grass in a week. So many of these dads had been recruited as de facto baby sitters by moms with jobs or moms who were just sick of doing all the heavy lifting. Moms inevitably sent Dads and their broods out into the neighborhood.

This new Dad Look of dirty sweat pants, uncombed hair and patchy razor stubble from half hearted shaving attempts came from the hard realization that home schooling kids for eight hours a day, providing three square meals and being a constant source of entertainment was hard work. And to think that so many of us complained about the quality of public education pre-COVID! Walk a mile in a teacher’s shoes and you will be singing a different tune.

My look, while similar to those shell-shocked dads, was cultivated from a lack of energy and the inability of my facial hair to grow back where the radiation had entered and exited my face and neck. Along the way, the the radiation also nibbled away at my energy like a mouse does cheese.

It’s human nature to want to pick and poke at growths and oddities that arrive on our skin. And there’s clearly a reason that a show like Doctor Pimple Popper not only exists–but thrives!

Running out of your own zits to harvest? No worries! We at TLC have your “Summer of Pop-A-Palooza!” I kid you not. That’s precisely how the show was advertised.



That leads me back to the time I was standing in front of the bathroom mirror and marveling at my patchy hair growth. I rubbed my finger across the stubble and was surprised to feel the hairs come off under my fingers. I was my on Wolly Willy.

I began by rubbing out some totally to-die-for hipster side burns. As I began to work on creating an ironic jaw line facial hair, I ran into a problem. Not only was my facial stubble coming off but so was my skin! Not wanting to rub down to raw bone, I immediately stopped, turned on the faucet and rinsed my facial hair stylings (and a bit of skin) down the drain.

Itchy and scabby is how I would describe my mood in this photo.

Fun and games aside, when I’m not terrorizing small children and trying to create my own “non-dad’s frazzled sheltering-in-place look,” I’m busy trying to force food down my gullet. The oncology medical teams preach trying to eat healthy and enough(!) in order to maintain an appropriate weight during treatment, just like a Pentecostal pastor preaches abstinence and waves poisonous snakes above his head. The body needs those nutrients and protein as it battles to rebuild the healthy cells which have been knocked out by the radiation. Losing too much weight can result (in my case) of my mask not fitting properly. That could result in having to have a new mask made and, with that, new points mapped on my head and neck to ensure the radiation still targets the correct areas.

This is the mask that bolted my head to the table so as to ensure the radiation entered the exact same spots on my neck and head. I did this every morning. Monday-Friday. For six weeks.

How hard could eating possibly be? It actually wasn’t too bad the first week or two. Slowly, though, the radiation began to do strange things to my body, specifically to my taste buds, my saliva glands and the entire interior of my mouth.

Have you ever been punk’d by someone who gives you what you think is one food but it actually tastes like something else? I can remember being punk’d as a kid and punking others with baker’s chocolate.What looks like sweet milk chocolate can be bitter and disappointing.

Radiation Therapy is the Ashton Kutcher of medical treatments. Ashton Kutcher has been living in my mouth for five weeks now and punking me along the way. Everything that passes my lips taste like wet cardboard despite my expectations. I’m not talking about a really nice high end cardboard that you might find a box of Jimmy Choo’s nestled in. I am talking about the cardboard you find in a basement coated in years of dirt and cobwebs.

And because I have a hard time producing saliva, I eat with a water glass in hand to help moisten the cardboard as it slowly dissolves in my mouth into a thick paper mâché. Ashton is no help either. He sits across from me usually with large piping hot large extra cheese pizza in front of him. Laughing as I gag my food down.

The other day Ashton got a taste of his own medicine. As he was shoving a slice into his maw, I could tell something was wrong. His moans of food pleasure suddenly stopped. With his mouth agape, he bent forward and expelled the bubbling hot pizza back on to his plate.

“Ahh..ahg…my mouth.. so hot…burns”

Pizza cheese burn. Culinary napalm that sticks to the roof of your mouth and leaves sores, blisters and the inability to eat anything crunchy for days.

Welcome to my world Mr. Kutcher, where the inside of your mouth is raw and tender. Chewing becomes not only a challenge but a small victory when you can masticate your food into small enough bits that swallowing only hurts as bad as the chewing–and not worse.

Shortly after the pizza incident, Ashton packed up and headed back to Hollywood. Evidently California has some of the best pizza burn doctors in the world many will often throw in a face tuck or a shot of botox for a nominal charge.

Lucky for me, my mouth seems to be on the rebound, as well. Each day it gets a little easier to eat. I’ve graduated to a better tasting cardboard and the sores inside and out are starting to heal. Now if I can only find a surgeon who can do something about this cereal on my face.

*Interesting fact. After writing this sentence I did a quick Google search of Lon Chaney as I couldn’t remember if it was Lon or Laun. Turns out that Chaney was diagnosed and struggling with bronchial lung cancer which was exacerbated by artificial snow made with cornflakes that became lodged in his throat during the filming of Thunder.

Categories
The Cancer Journey

“Never let formal education get in the way of your learning” Mark Twain

No one ever accused me of being a star student. In fact I spent the first part of my early childhood education in “behavior disorder classes”. Being a pre-Ritalin child there was not a magic pill to keep me in my seat so I was sent to the BD class to give the teacher and other students a break from my exuberance. High school and college were better but I am not sure that I learned a lot that moved me forward in life. Instead I took so much more away from the informal education that was provided to me. Waiting tables and bartending, I engrained the mantra of my GM, Dick Rowe, “kill ’em with kindness” into my brain so that it resonates even today in my head when I deal with an upset customer in my current role as a outdoor retail store manager. Racing bikes taught me the value of creating and following a plan. If you want to go faster and farther then you better have a plan to get there and make sure you stick to it.

This is not to dismiss formal education. Without a formal education most of us would still be counting on our fingers and toes and reading and writing on a level of a student in a school run be Betsy DeVos. Where would high school grads be without the idea of furthering their formal education by heading off to college. Universities often tout this higher formalized education as what shapes and molds young adults into productive members of society. If I remember correctly formal education was Monday through Thursday (I never took classes that met on Friday) and the weekend shifted away from Friday to Sunday and instead begin on Thursday as soon my last class ended. The real learning began on those long weekends.

Once the weekend begins the informal learning began. Some of these informal courses that I and my keg buddy peers dabbled in that were offered in the informal class room of life included- Finance for Beginners- How to Drink on the Cheap all Weekend Long, Discovering the Science of Optics with Beer Goggles, Your First DUI an Introduction to our Legal System, and Math for Beginners- negative numbers in your checkbook are less than zero.

Informal learning never stops and this is the case when your are diagnosed with cancer. Yes, there is plenty of formal learning that happens. I know I regret not having paid better attention in some of my science classes. If I had paid attention instead of doodling penis and boobs in my anatomy and biology books, I might have actually remembered that we have hundreds of lymph nodes in our body and not the six to eight I thought I had. Surely this would have saved me from an internal freakout when the doctor told me they removed 18 of them from the right side of my neck. In my mind I was now down negative ten lymph nodes. Lucky for me a quick formal lesson from the doctor set me straight. Obviously and thank goodness he got much more out of his formal education.

Since my diagnosis the learning for me has not stopped. I am learning more about cancer than I want to, discovering things about myself and realizing that friends and family are the shit when you are going through the shit.

The formal education started shortly after my diagnosis as I began making the rounds to the various doctors that would be part of my treatment. Armed with a stack of pamphlets, I headed home for some formal education. There was much learning to be done around the human papillomaviurs (HPV), what a bilateral neck dissection is, and which is worse P16+ or P16-.

When the doctor told me that I would need radiation treatment after my surgery I was super excited. As a Marvel comics fan I quickly begin to envision all the super powers I would be blessed with. Maybe even better I could pick the ones I would have. I could have the doctor tweak the dials for super strength and invisibility. Sadly my formal education had failed me again and the doctor shortly after he explained lymph nodes to me also explained that the type of radiation treatment I would be receiving would not endow me with super power. I was obviously confusing cancer radiation treatment with radioactive spider bites `a la Peter Parker.

The formal educational pamphlets provide a ton of insight and helped me understand in not too scary terms in what I could expect before, during and after my treatment. There is always a big emphasis on every person is different in how they respond to treatments and the phrase “you may experience…” showed up a lot when reading about the various side effects and outcomes I could expect. Fare enough but what I learned is you don’t know until you know.

The formal learning starts on Day 1 of your diagnosis.

For example when they talk about people experiencing a metallic taste in their mouth during radiation treatment, what I really learned is that unless you have sucked on a handful of nickels while trying to eat dinner then you really can’t comprehend that metallic taste.

The formal is transcribed into the informal learning on almost a daily basis before and during treatment. When my doctor explained to me about my bilateral neck dissection and partial tonsillectomy, I could not comprehend what he meant when he said I would be in a lot of pain and discomfort after the surgery. I quickly learned that having a tonsillectomy as an adult hurts. Not like in a John Cougar Mellencamp “Hurts so Good” way but like swallowing a metal spikey ball way. And because there is only so much damage you can do on the inside of a person’s mouth and throat, I was also filleted open along the right side of my neck. I got a small taste of what it might be like to have a stroke as I woke to find I had reduced control of the right side of my face and shoulder. Evidently you have to go through a lot of muscle and nerves to get to those lymph nodes.

Well that hurt. The literature gives you know clue on how crapy you are going to feel after surgery.

“You may experience…” also showed up, in a lot of the literature I was given, when talking about energy level, brushing your teach, and dry mouth. I now know what it feels like to be an old outdated iPhone. I could start the the day with a 100% charged battery but after just a few hours of use I would be flashing the 10% battery life left warning. I often felt like an iPhone 6 in an iPhone 11 world.

Brushing my teeth which I had always taken for granted now became a thing of abject misery. A sharp pointy stick poking repeatedly at the sores on the inside of my cheeks, I quickly learned could not have felt any worse than my toothbrush. I am still pining for the good old days when I could just turn on my trusty Sonicare toothbrush and let its vibrating bristles work their magic on my teeth.

There is not enough water on the planet to cure the dry mouth caused by the radiation treatment. The “you may experience” dry mouth and will need to ensure you are staying adequately hydrated sections of the formal cancer literature should be replaced. Instead it should state “to understand the type of dry mouth you will experience please do the following. One, take a hair dryer and turn on to highest heat setting. Open mouth and allow hair dryer to blast hot air into your mouth for five minutes. Next shove 10-15 saltine crackers into your mouth and begin chewing while still running the hair dry at full blast. Once completed if you still have any moisture in your mouth repeat.

Trying to solve dry mouth by drinking copious amounts of water only creates other problems. I spent so much time through out the day getting up to pee that I actually got a call from my utility company. They had noticed a spike in our water usage and were calling to let me know they suspected we had a water leak at our house. I thanked them them and let them know that we had just been eating a lot more saltines and in turn had upped our water consumption.

The list goes on and on for the day to day informal lessons cancer has provided my body. Who knew that pain killers caused constipation? A reason unto itself not to get addicted. Who wants to be strung out and full of shit?

Radiation treatment around your head and neck region shortens shaving times. With hair only growing back in patches I can shave my entire face with out having to lather up with Barbasol.

Surgery and radiation are (at least according to my stack of literature) effective treatments agains cancer, but naps and naps with cats can do wonders, too.

Not all my cancer learnings have been about the physical. Friends and family are a must (It goes without saying that great doctors and medical staff also help. I’m very fortunate as I have all of them in spades) in making sure you can push through the shitty times. Here’s a short list of how I’ve leaned on friends and family these past months.

  1. Leveraged my illness to get lots of cookies by telling them that my doctor actually encouraged me to eat cookies to maintain my weight.
  2. Same as number one but insert beer for cookies. No I have not been sitting around the house drinking beer during my treatment but I did have a couple of beers once I was able to after I healed up from surgery and before I started radiation.
  3. Trick them into helping me knock out my Honey Do List. This actually happened by accident when I mentioned to an electrical engineer friend that I was going to replace some wall receptacles as soon as I felt better. It took him longer to go to the hardware store to purchase them that it did for him to actually replace them. I’m still looking for someone to trick help with some painting.
  4. Food, food and more food. At times I felt like I was in a foodie wet dream. Our fridge and freezer were stocked with homemade soups, pastas and chilies. Four weeks after my surgery we were still living off the kindness of incredible friends who also turned out to be amazing cooks.
  5. Companionship. Sometimes just having a friend or family person in the room was enough. No words needed.
  6. Had a laugh at their expense by making inappropriate cancer jokes.
  7. Letting myself be vulnerable and letting people help me. This was tough me for me as I like to think of myself as being pretty independent, but I realize that my friends and family were there because they wanted to help and support me and I needed to let them do that.

I am not sure that I am going to come out of this cancer thing on the other side any smarter but I am hoping for a little bit more wisdom, humility and compassion. I use to roll my eyes when I heard someone talk about how cancer changed their life or scoff at the idea of pink ribbons and charity rides. Maybe some of that came from my own stupidity (okay maybe a lot of it came from that) or some sense of invincibility that because I ate healthy and exercised that I wouldn’t get cancer.

Cancer has changed my life. No I don’t have super powers but I do have super friends and family. I don’t have all the answers but I do have a new way at looking at my life and how I view others. I don’t have everything but I do have a chance to help others have more. And that I didn’t have to go to school to learn.

Categories
The Cancer Journey

this is not how i die

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

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

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

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

And here I was, flying down the gravel road.

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

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

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

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

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

How do I die?

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

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

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

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

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

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

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

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

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

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

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

I am fortunate.

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

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

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

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

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

Categories
The Cancer Journey

The Worst Day Ever Mights be the Best Day

The words.

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

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

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

It was nothing like that. 

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

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

Nothing else.

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

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

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

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

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

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

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

I’ve got to kick this cancer.

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

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

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

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

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

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

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

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

“Will I go bald?”

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

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

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

“What? I don’t know what to say.”

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

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