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

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