What a Long Strange Trip…

This blog started out as an email to close friends and family about our travels when I retired in 2016. Family told family and friends told friends until at some point my email server reported me as spam.

“You need a blog” someone said.

“What’s a blog?”

A friend I met in a coffee shop (where else?) said “I’ll show you” and 2WastedMinutes.com was born. It had a good run as a travel journal while we went all over the US and Canada in our motorhome, towing a Jeep behind, seeing places and meeting interesting people.

In 2019 however it morphed into a blog of a different kind of journey. I was told I had tongue cancer while driving our 40,000 pound motorhome down I-90 in Eastern Washington. It was unreal to hear my name and cancer in the same sentence. I was 10 miles from the nearest exit, going 65 mph, no place to pull over and process. “Not a big deal” said my surgeon. “If you are going to have cancer, this is the one to have.” I told him we’d turn around and head back home right away, asking “how soon can I get in for surgery?” No rush he replied, but I rushed.

Surgery was scheduled, the tumor was removed, I went home within a day or two and healed well. After 3 weeks, I was back to normal. Wasn’t this too easy? Cancer is not supposed to be like this is it?

It isn’t.

My surgeon had not taken enough margin around the tumor. Four months later, cancer returned in the same place.

The next surgery was not quick and easy. I went in for surgery on March 5, 2020, and came out 8 1/2 hours later with the right half of my tongue gone and replaced with the skin from my forearm (called a flap), hair and all, and I was minus some lymph nodes. They took out one of my two arteries in my left arm to connect the dots. For good measure they inserted a tracheotomy and a feeding tube. I was a big swollen mess.

During my 8 days in the hospital, the world shut down due to Covid. Had I waited another week to schedule this surgery I would probably not have been allowed to have it until it was too late. They were saving all the beds for Covid patients.

But I did have the surgery, plus 6 weeks of radiation thereafter. Painful, excruciating at times, difficult. This was how I anticipated cancer would be.

I was told I needed to build up my weight from 170 to 190 before radiation would commence. “All you’ll have going for you Ken is rest and calories.” So I did. “And you’ll need to keep your weight at 190 throughout radiation.” Not easy, but I did.

After radiation was completed I asked “when can I take my foot off the gas and lose weight?” Not yet, they said. Chewing was hard. Swallowing was worse. My taste buds had been obliterated by radiation. I had no saliva. The flap was swollen. I bit my cheeks and flap every time I tried to take a bite. Food consisted mostly of protein drinks and shakes. It didn’t matter what flavor – I had no taste.

Months went by, and finally some taste returned. I started chewing food. The swelling started to recede. Even the slightest bit of spice or heat was painful but I slowly discovered some recipes for foods I could actually enjoy.

With the help of a wonderful cancer team, we slowly got a handle on how I could heal and the things I could eat. Fortuitously I discovered an oral oncologist who treated a fungus in my mouth that radiation had given me. Slowly, the pain of eating went away. More taste buds came back. I started to gain weight.

Five years passed.

In May of this year, I told my swallowing therapist “remember when you told me I had to keep my foot on the gas and keep my weight up, and finally you said OK, you can SLOWLY start dropping your weight? And then I dropped back to 170?”

She smiled.

I pointed to my protruding stomach and told her I was now at 210 lbs. Yikes!

“I LOVE that belly!” she replied. “So many of the patients who have gone through what you did NEVER gain weight. They are emaciated, sickly, and have difficulty eating anything at all. That pot belly means you can eat and actually enjoy eating!“

A bit too much my wife would say.

Yesterday I went in for a routine follow up with my cancer team. They said, “as far as we’re concerned you’re cured. It’s been over 5 years. No reason to schedule a follow up. Call us if something gets worse but right now everything looks great.”

Hugs all around. And then we celebrated.

Click below for two tunes that have been rattling around my brain today…

https://youtu.be/QByjAkv4q4M?si=3BQQor4kN9x6viv8

https://youtu.be/aEKmbDbFMI8?si=ihZF6gR4_UpJlcY4