Note: This overview of my ongoing battle with cancer was written by request of the Support for People with Oral and Head and Neck Cancer organization, whose nationally circulated publication serves thousands of otorhinolaryngology (ENT) patients and physicians. I share it today in hopes Arkansans who have and will contract such cancer will find it helpful.
It began suddenly, as with many who fall victim to head and neck cancer, with a small and painless lump beneath my left jawline. No big deal. I took a round of antibiotics, assuming the sudden inflammation was some kind of infection.
But two weeks later after the thing seemed a tad larger, I visited nurse practitioner Jason Froeschle. He felt the growth and ordered an ultrasound to "rule out anything scary." Then it was off for a CT scan and biopsy.
Despite prayers and positive thoughts, those scariest fears were confirmed. A squamous cell cancer was rapidly growing in my lymph node.
That's also when my life would change dramatically, as it does for everyone diagnosed with head and neck cancer, widely considered a worse kind of cancer because of the quality of life it affects from trying to cure it it. As with many who receive this diagnosis I wondered, "why me?"
ENT doctor and surgeon Paul Neis of Mountain Home soon removed my left tonsil in search of the so-called mother cell from whence the beast had spawned. That proved negative. The birthplace remains a mystery, as I've never smoked nor had HIV.
Rather than having the lump removed by surgery, a viable alternative, I chose 35 sessions of radiation supplemented by seven rounds of chemotherapy spread over the ensuing weeks. My radiation oncologist, Dr. Arnold Smith of Harrison's Claude Parrish Radiation Center, said the cancer's margins were clear and prospects looked good for its complete removal.
He also warned after my third treatment that I'd develop "the sore throat from hell." He wasn't exaggerating. Swallowing soon became almost impossible, while being told I should try to consume at least 2,100 calories daily. The objective was not to lose more than 10 percent of my weight.
To maintain my calorie level under such conditions, especially being a Type 2 diabetic, I was actually thankful to have a chemo port and gastric peg tube surgically inserted as treatments began. At 6 feet tall and 243 pounds at the time, I didn't realize I had eaten my last solid food.
In the radiation room, technicians fashioned a cage-like plastic mask for me to wear while lying on my back. It would keep me perfectly positioned and still as a Volkswagen-sized Intensity Modulated Radiation Therapy (IMRT) machine whirled around my head for about 20 minutes, pausing at various angles.
Even with the mask's webbing that allowed easy breathing, I became claustrophobic several times over six weeks of sessions lying motionless beneath the machine, and needed an occasional pill that calmed my nerves.
After those treatments, it was off to another wing of the building where once a week I'd spend an hour on an IV while bags of hydration and a specialized concoction dripped into my arm. Watchful nurses and, occasionally, soft-spoken oncology hematologist Dr. Candice Baldeo would pass by to check on my progress.
In search of any encouragement, I asked if she felt the combined treatments would kill the beast. Her response was honest, yet not what I wanted to hear: "I am hopeful."
Chemo treatments with others were a matter of watching TV, occasionally dozing off, and sometimes enjoying a lunch prepared by the adjoining hospital kitchen.
I also would meet weekly with Dr. Smith to discuss my progress. It was encouraging to learn the traditional radiation/chemo process for eliminating squamous cells had about an 80 percent success rate. That news boosted hopes, making it easier to remain positive.
Weeks of routine treatments dragged on until my final day arrived, which meant I'd thankfully be ringing the bell celebrating my final treatment. While the other radiation sessions hadn't caused burning, the farewell dose was a doozy, creating a beet-red splotch on my neck that required a week's worth of salve. I was told this was because the skin in that area had finally broken down after weeks of radiation.
Surely completing the ordeal had been enough to end my nightmare. I underwent a a PET Scan after six weeks to make certain no cancer cells remained.
A few days later I learned the tumor still showed flickerings of life. That meant weeks of radiation and chemo had been for nothing. Now what? I felt deflated and defeated to find myself among the unfortunate 20 percent.
My remaining alternative was the surgery I'd unwisely declined initially. Thankfully, the University of Arkansas for Medical Sciences has one of the world's most renowned ENT surgeons in Dr. James Suen, who offered to take my case.
Within weeks, I was in a hospital gown on a gurney bound for an operating room. Again there was hope, only now more realistic. Soon, the anesthesiologist was placing a mask over my face as I winced into the bright lights. Dr. Suen had a good idea of the challenge he faced without actually getting a firsthand look, and promised he'd do all in his ability to end it.
By now, eight months had passed since my diagnosis. The relentless beast had continued to swell to plum-sized, stretching to beneath my ear. All that radiation and chemo didn't seem to have slowed its progression much, while also frying my left primary salivary gland. That left me feeling angry and deeply disappointed at no one in particular, only toward this unexpected outcome. But hey, who wouldn't be?
In what seemed like a moment, I awoke in the recovery room. Seven grueling hours had passed in which Dr. Suen had been forced to remove a cancer-invaded jugular vein, outer carotid artery and the all-important vagus nerve. The ravenous invader had grown to the base of my skull and was seeking a way into my brain to cause a stroke.
Dr. Suen had taken 30 biopsies around the cancer until he was confident it was gone. He said he wished he'd have gotten to the cancer six weeks earlier. So did I.
I had another PET scan six weeks later, which was negative.
But this relentless beast had taken its toll. After more than a year with my vagus nerve and others in the neck gone, the left side of my face, tongue, throat, and ear remain forever numb. My left pupil is smaller than the right, my lip droops slightly and I can no longer raise my left arm to my shoulder. My mouth is often dusty dry and my voice box is constantly beset by mucus and only half-functioning. I can't swallow solid food or water, so I remain on a feeding tube and have dropped to 192 pounds, taking me below diabetic range.
A ray of sunshine. Hooray!
I didn't expect a side effect of radiation to be the thick and sticky phlegm constantly accumulating in my throat and on my larynx, which continues well after a year. My swallow therapist called radiation "the gift that keeps on giving." Mucus also has plugged one ear.
Life as I knew it until two years ago had quickly become a memory. Thank God for my loving and supportive wife Jeanetta, who has been beside me throughout it all, and my family, friends and prayers statewide. I can't imagine anyone fighting such a sustained health battle alone.
Friends ask how I feel today about my situation. Occasionally I grieve all of the me that was. Who wouldn't? However, what choice is there but to accept my life today is what it is, rather than what I wish it were?
I'm most grateful for Dr. Suen, whose heroics beneath the halogens I believe saved my life. I doubted every surgeon would have pursued such risky extremes to try and slay this beast. He told me had I not opted for the surgery, I might not have survived another year. That's been nearly 14 months ago.
He asked the other day if I'd scheduled another PET scan after a year. Considering my stage of life at 77 and these disabilities that permanently eliminated former joys such as eating, socializing and playing golf, I asked what were my choices should cancer remain. Endure more surgery or chemo to hopefully get me back to where I am today?
I'm still here and choosing to remain positive and productive, feeling thankful for others around me, and hopeful I'm able to make a difference by sharing my thoughts and constantly remembering that those who don't leave their past there risk destroying their future, which is why we each must live for what today and tomorrow bring--regardless of what yesterday took from us.
Now go out into the world and treat everyone you meet exactly like you want them to treat you.
Mike Masterson is a longtime Arkansas journalist, was editor of three Arkansas dailies and headed the master's journalism program at Ohio State University. Email him at [email protected].