How I became Memorial’s mouth cancer guy (Pt. 1 of 3)

“Am I gon’ die.” I could imagine generations of Dukes and Crowders who worked in southern mansions and northern factories spinning in their graves. How could I not maintain the clipped and precise college educated diction earned by their collective sweat equity. Even worse, I slipped in front of “mixed company” – if you know what I mean.

I guess the ancestors and those still here forgave me once they knew the deal. I just received a cancer diagnosis from the oral surgeon who performed a biopsy on my gums. So as he calmly explained that the results returned positive for squamous cell carcinoma, the question leaped from my mouth in the form of a ghetto stereotype.

I was real in that moment. The question I blurted out J.J. Evans style hung over all the scientific talk about surgery and radiation and chemotherapystages and five year survivability.

How I Made It

Several factors explain why I’m still here eight years later. The support and prayers of many people, the quality of my medical team, and  persistence of my wife to make me get that discoloration on my gums checked out.

Lets begin with Gail. We were sitting at home one day and I casually asked her to look at what a bruise on my gums above my two front teeth.

She asked for a closer look in that comfortable manner that comes only as the result of being someone who has seen me naked and heard and smelled my flatulence plenty of times. I peeled up my front lips to reveal my gums and her jaw dropped like a character on a Warner Brothers cartoon. Gail grabbed a phone book, flipped the yellow pages to orthodontists and kept looking until she found a dentist who had an opening in late April.

Taking a Sample

That dentist, Dr. Bantz, took a few Polaroids of my mouth and showed those photos to Dr. Lehman, the oral surgeon who conducted the biopsy. They met over lunch. Doctors have real strong constitutions. I’m guessing that Dr. Bantz suspected cancer immediately, and he wanted confirmation.  Dr. Lehman also suspected cancer and that a sample of the affected area needed to be biopsied.

After the biopsy and the surgery and the recovery period but before I went through a month of radiation and chemotherapy, I learned that being a relatively young non-smoker kept me alive. I also learned that doctors have an annoying habit of burying the lead.

The Second Opinion

Dr. Zon, my medical oncologist, suggested that I get a second opinion from oral cancer specialists at the IU Medical Center in Indianapolis. Gail, my mother-in-law and I went there in September. I thought I was a goner when the doctors told me that only 31 percent of oral cancer patients live five years. I recall the preciseness of his pronouncement. I felt my heart drop. My wife would be a widow, my children fatherless and my mother would see another child die.

The doctor let that grim news hang out there for a minute before mentioning that all those patients were all 60 year old smokers, drinkers and snuff chewers. I didn’t know whether to hug him or use his stethoscope to give him a colonoscopy. The real reason that my medical oncologists (not to be confused with my radiation oncologist) sent me to Nap was to get advice on what kind of chemo to use. We had two choices – the one that would ruin my kidneys and the one that wouldn’t. We selected the second one – not a hard choice.

What is happening to me?

Then it was back to the Bend to start my treatment. The first of my 33 radiation treatments was on Sept. 8, 2005 with the first of my six chemo sessions taking place on Monday, Sept. 12, 2005.

The staff told me me about the side effects They tend to understate things, so I still ended up being unpleasantly surprised. The radiation oncologist said radiation would give me mouth sores. That came nowhere near explaining the boils on my tongue that looked like something I AM cast down on the Egyptians to punish them for not letting his people go.

They said radiation would damage my salivary glands. The chronic dry makes it hard to swallow.  I nearly choked to death at least three times. Radiation burned my taste buds. Some foods I can’t taste. and I’m sensitive to spicy foods. I lost a lot of weight because the sores on my tongue made it impossible to eat solid food, I needed a feeding tube that dispensed a tan nutrient filled liquid into my stomach. I did NOT see that coming.

Pitch man

I made it through the treatments. They scanned me a couple of months later to make sure the cancer was gone. It was. I got scanned every three months at first. Then every six months. Then every year. Still no sign of cancer. Eventually I hit that magic five years. That’s when I could say that I beat it.

That’s also when I became a poster child for Memorial’s unit. The hospital featured me and other survivors in commercials and in their calendar.Got paid $250 for the commercial. I know Memorial hopes the newly diagnosed see the commercial and come there, and I’m cool with that.

Besides, the folks in radiation/oncology started using me as an advisor right after my treatments ended. They wanted me to advise recently diagnosed head and neck cancer patients. I agreed because unless you’ve had it you can’t really explain it.

I happily talked to these recently diagnosed people, but  I was just winging it. And I wondered how much my advice helped. I needed a mentor and a sounding board. I would soon get one.

  1. I loved reading this Howard. It really showed your personality and humor. Thanks for being so candid and open about it all. I’m so glad you have survived and thrived!

  2. I am inspired by the way you turned this life changing experience into a positive. Cancer is a scary word. My mother and brother-in-law both survived brain tumors and my step-dad prostate cancer so I have an idea of the amount of stress that is generated by the diagnosis. It would have been greatly beneficial if someone in the know could have told them to expect the temporary face paralysis and loss of coordinated movements.

  3. Invictus said:

    You’re lucky to have such a wife and mother-in-law! I am glad you survived!
    I totally agree with Karla, cancer is such a frightening word!! Last year, my auntie died of cancer after struggling for over 5 years. We watched her slowly dying from cancer that viciously devoured her body until it eventually killed her.
    Thanks for sharing!

  4. DebbS said:

    Thank you for sharing your inspiring story. I love the way you are able to weave humor into such a serious topic in a way that it doesn’t take away from the seriousness, but rather shows your humility.
    I think that you’ll be a blessing to those who have to face this in their own lives. Maybe real leadership is like prayer – it’s something you do, not to bring attention to yourself, but to deepen relationship and service.

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