I’ve now had the fortune of being free of cancer for three years — the longest break of my 20-year saga. At a recent check-up, the doc said it might not come back. But I know now it is coming back, slowly. Next time I’ll be ready for it.
My dad pulled in to the drug store parking lot, and I waited uncomfortably in the car while he went in to fill the prescription. In an attempt to get comfortable, I put my feet up on the dash — a terrible habit I’d had since childhood. The numbness was wearing off, and the throbbing was starting. It was bad this time.
I’d had numerous biopsies. Fortunately, they all came back benign. But this one, for some reason, was particularly bad. Perhaps I was just raw from all the previous unhealed spots.
I wriggled in my seat, half-choking myself as the seat belt cut across my throat. I sunk way down, twisting and searching for a comfortable way to plant myself deep into the roots of the car.
A surge of pain came, as fast as the cars whizzing by on the main road behind the parking lot. Another came right behind, tailgating much too closely. Then it slammed into me. I kicked the windshield of my dad’s Mercedes, and it cracked with a loud BOOM! followed by a slow spread of pain snaking through my whole body.
Dad made it back to the car, prescription in hand, shocked to find both me and his car is such poor condition. We drove home. I took the pain killers. They didn’t kill the pain.
A few days later, we got the good news: The biopsy came back benign again.
Good news doesn’t last
That had been the worst biopsy so far. I went through several years of more benign results. And then the phone call finally came — it was malignant. I officially had tongue cancer. It’s common in smokers, older men, and heavy drinkers. I was none of these.
We went to Sloan-Kettering to sign a bunch of papers. They patiently placed one after another in front of me to sign. I remember thinking that I should read what I was signing but that it didn’t really matter. I needed the surgery. I had to sign them anyway.
I was worried. I’d already been dealing with this for five or six years. I was always in so much pain from the biopsies. This time it was really cancer. How was I going to manage this much pain?
After the surgery, they sent me to a pain-management specialist, who gave me lots of drugs. They never really killed the pain, but they did cut the edge off. After that first surgery in 1998, it all became a blurred, continuous loop of biopsies, malignancies and surgeries for another 10 years. So many, I lost count.
I went for check-ups every 90 days. I hated even the good check-ups, because each one meant a two-hour commute back to the hospital’s head and neck department. I’d often wait for an hour in the office, trying hard to think about how lucky I was as I stared at people with half a face and listened to the amplifiers of people who no longer had vocal chords. Then I’d get 15 minutes of poking and prodding into my most sensitive physical and emotional place, followed by a two-hour train ride back home filled with throbbing pain, every dent in the track a jolt of lightning to my mouth.
Then came another bad check-up — the usual word “malignant,” but this time accompanied by the words “aggressive type.” The doctors explained that this time I would have more than emotional scars. They would have to take more of the tongue, part of the jaw, some teeth, and they would have to do a neck dissection — a scar from the middle of my throat to the back of my ear.
Fighting the fog of ‘pain management’
In 2010, I started a series of bouts that never gave me more than six months of reprieve between malignancies. That’s when I built up a tolerance for the narcotics and needed more and more to take that edge off.
One day, I told the pain-management doc that I was in a lot less pain and wanted to get off all of the drugs. It was like poking my head out of a drug-induced cloud to see a little bit of blue sky. To my amazement, she congratulated me and sent me on my way, nary a prescription in hand. A few days later, I was out of drugs completely, and less than 24 hours later, withdrawal ensued.
I called the doctor to explain what was happening and to ask for more medication so that I could wean myself more gradually, but they told me that they could no longer prescribe medication because I had told them I was not in as much pain.
Severe psychological agitation transitioned quickly to severe physical agitation. I had the chills and the sweats at the same time. The same foot that went through my dad’s windshield a few years earlier was now kicking off covers, blankets, pillows. I wanted everything off. I wanted the noise in my head to turn off. I pulled and twisted my face like the figure in the Edvard Munch’s “The Scream.”
With time and my husband’s nurturing, it eventually faded away. I emerged from the fog whole. The physical pain never completely left, and the emotional pain was stored forever in my memory. But at least I could think clearly again.
Within six months, the cancer was back. I had lost count — was this surgery No. 9 or No. 10? I couldn’t survive it without pain meds. I forced myself to go back to the pain doctor. This time the cocktail was a mix of Morphine and Fentanyl.
The cancer returned again, and again, until finally there was a break. I was nine months cancer free, and although I was never free from pain, I wanted to be free from that fog.
I was a bit older and a lot wiser. I knew that if I could kick pain killers once, I could kick them again. With my patient husband by my side, I weaned myself off of everything for the second time in my life. This time it was much easier. This time I did it my way. I cancelled my pain doctor appointments, and I haven’t been back since.
We’re not done yet
I’ve now had the fortune of being free of cancer for three years — the longest break of my 20-year saga. At a check-up nine months ago, the doc actually said for the first time that “It might not come back!” Instead of giving me an appointment to come back in 90 days, he told me not to come back for six months.
I told my folks the good news. When I repeated what the doctor told me, I said “might,” but they, ever hopeful, heard “won’t.”
When I went for that follow-up visit, there was a new pre-cancerous spot brewing. I knew it was there. It had been hurting me. I was back to my regular check-up routine. The last time I saw my doc, we both knew it was bigger.
It’s coming back, but slowly. Next time I’ll be ready for it, because next time I’ll know a few things. I’ll know I might get three years before I have to go through it again. I’ll know I can kick the drugs when I want my life back, and I’ll know car windshields can be mended, and so can broken tongues.