by Brad Willis
Finally, I slip out of the void. I feel life slowly returning to my body and start to find my way back into the world. But I have no idea where I am and begin thrashing and trying to get up. Two big men begin restraining me like I’m a prisoner caught during an escape.
“Get off me! Let me go! Dammit, let me go!” I hear myself trying to scream, but my voice won’t come out.
“You are in the hospital recovery room,” a nurse says with authority as the two strong orderlies continue to hold me down. “Snap out of it!”
I struggle and fight some more as the room finally comes into view. My sister Valerie is right next to me. It was her voice beckoning me back from the beyond. As she holds my hand and comforts me, I’m convinced that without her I would have permanently slipped away.
“You had major surgery,” Valerie tells me. “You’ve been out for hours.”
“What do you mean, major surgery?” I’m barely able to rasp this out, and it hurts my throat like crazy.
“Let’s wait and talk to the doctor,” a nurse says firmly while guiding me into lying back down. “You still need more rest.”
It’s one of those unspoken things. Everyone knows something is terribly wrong, but it’s not time to discuss it. There is some complication. Maybe a mistake during the surgery. Too much anesthesia. Possibly something worse. I try to swallow again, but there’s tremendous pain in my throat and my neck is throbbing as fast as a jackhammer. I reach for my neck. The entire left side is heavily bandaged. This was more than a simple biopsy.
“There’s good news and bad news.” The surgeon, Dr. Low, is offering me a classic cliché. It’s mostly bad news, so the approach is to look on the bright side first, then deliver the hard facts as softly as possible.
“The lump wasn’t the source of the problem,” he continues. “We found the source and took care of it.”
“So what was the source? What’s the problem?” I’m still barely able to speak but am back to playing journalist and want to get straight to it.
“It was in your tonsils,” Dr. Low says. “We were able to cut it all out and remove your tonsils along with some of the areas around them.”
“Cut what out?” I sound like a hissing snake.
“Squamous cells,” he says.
“What are squamous cells? What do I have? Just come to the point.” Now it feels like my throat might explode.
“You have oropharyngeal carcinoma,” Dr. Low says, as if it’s a confession. “When we biopsied the tumor we found the squamous cells. We had to sedate you further and perform emergency surgery. After we removed the lymph gland from your neck we found that the squamous cells weren’t just in the lump. We had to follow it, go into your throat. We found the source there, in your tonsils. We cut out as much as we could find.”
“Carcinoma,” I croak the word out slowly. “That’s cancer.”
No one ever wants to say the word. Cancer. That frightening disease that always happens to someone else. Cancer. One of the leading causes of death in America. Cancer. Fifteen hundred people a day, more than half a million annually. Cancer.
“You are going to need some treatments,” Dr. Low says. “Radiation is a necessity. We need to try to kill any squamous cells that may have been missed in the surgery, get everything we can. You’ll begin radiation treatments once the incision on your neck heals a bit.”
“So what are the odds of beating this?” I ask the question Dr. Low has probably heard a million times, my voice almost inaudible.
“We don’t know,” Dr. Low says calmly, “and I don’t think it’s ever helpful to speculate and talk about percentages. Each case is different. We just have to do our best and be positive. For now, try not to talk much and just go home and rest.”
Go home and rest. But will I survive? Will I die? If so, how long do I have? These questions drive me crazy on the drive home. Even though I’m still stoned from whatever they gave me during the surgery, and now have a new bottle of heavy painkillers, I feel half crazy and completely hyped up. All night it pounds in my head: Cancer. It’s hard as hell to swallow anything with my throat sliced open, but I manage to down a few extra Valium, after crushing them up and mixing them with water. Still, I can’t doze off.
It’s late now. Well past midnight. I still can’t sleep. Cancer. I can’t get the word out of my head. I get up as quietly as possible and tiptoe into Morgan’s room to watch him sleeping in his crib. I listen to the gentle rise and fall of his breath, feeling connected to the very core of his being. Tears run down my cheeks like wild rivers. It’s a terrible thought that I’ll be leaving Pamela without a husband, although I’ve often felt she might be better off without having to care for me or face my constant emotional flare-ups. But the prospect of leaving my son without a father rips me apart inside.
“I’m sorry,” I whisper softly, the rasp so bad now it’s barely audible, careful not to awaken him. This little shining light by the sea has just flooded my life with meaning and joy. And now this disease wants to steal the life out of my body. “I’m so sorry.”
CHAPTER 18
Radiation
SHE CAN’T BE more than five years old, playing quietly with her doll on the floor of the waiting room in the hospital’s radiation oncology wing. Her red woolen hat matches her winter coat, hiding the baldness that has resulted from her chemotherapy treatments. Her huge green eyes are missing their luster. Her little cheeks are ashen. Her forehead is etched with a frown. She is deeply absorbed in comforting her doll, whispering that everything will be okay. Her parents sit close by watching her, unable to conceal their anguish and pain.
As a journalist, I would instinctively focus on this child as a poignant way to illustrate the heartbreak and tragic randomness of a killer disease. But I’m no longer behind the camera lens documenting the suffering of others. I’m on the other side now, trying to survive. We’re all trying to survive: children, teens, middle-aged adults, a few senior citizens, sitting here together in silence. Waiting in the waiting room. Almost stuck in time. We share a common bond, but there’s little eye contact and no conversation. Despite the floral carpet and nature scenes framed on the walls, it’s somber. Sterile. I can almost taste the quiet desperation in the room.
The little girl hugs her doll and gives it a kiss on the cheek. I can’t take my eyes off her as I wonder if she will survive or if cancer will soon claim her precious little life. I wonder about all of us. No doubt everyone here holds similar thoughts. It’s a huge elephant in the room, and it feels like an eternity before I’m called in to see the radiation oncology specialist, Dr. Chasan.
“It’s been three weeks since your surgery, and your scar seems to be healing well,” Dr. Chasan says as she holds my head gently with her hands, slowly turning it side to side to inspect my neck. “We have you scheduled for fifteen treatments over the next seven weeks. You’ll finish up just before Christmas day.”
Like Dr. Low, Dr. Chasan won’t tell me about my odds for survival. But I do get a new fact from her: The cancer is stage IV. “What does that mean?” I ask quickly when she mentions it. It seems to catch her by surprise. “Oh, I thought you had been told,” she says, sounding a little hesitant. “It can be pretty tough, but we have a good treatment program for you.”
I press for more information, but she artfully dodges. She is very professional, and I begin to realize it’s probably an important protocol not to discuss specifics too much with patients, especially if the news is likely to depress them.
“The radiation procedure is painless, you won’t feel a thing,” Dr. Chasan gets me back on track as she reaches for a thin, black rubber hose connected to a metal box sitting on the counter. I can see that the hose has an oval-shaped glass tip on the end. “But first, I need to look at your throat and take a few images. Unfortunately, this procedure can be a little uncomfortable.”
I can’t imagine any greater discomfort than what I’ve been living with the past several years, until Dr. Chasan holds the glass tip of the hose closer to my face an
d says, “This is a tiny camera. I have to insert this tube down one of your nostrils to see what’s going on. We need to go in this way to get a full view of the upper throat.”
I take a deep breath through my nose, visualize the process, then swallow hard. “Okay,” I say, “let’s do it.”
She sprays a numbing agent into my left nostril and has me breathe deeply through my nose, holding the right nostril shut so the spray penetrates deeply up the left sinus. Sixty seconds later she begins to insert the tube-cam into my left nostril and down the sinus passageway into my throat. Even with the numbing spray, it’s worse than I feared. The pain is excruciating as she slowly forces the tube farther. My right nostril bubbles and foams with mucus. My eyes flood with hot tears. I want to bite onto Dr. Chasan’s wrist and chew her hand off to make her stop. I gag and convulse with dry heaves when the camera enters my still-tender throat. It’s a complete violation and I can’t wait for it to end.
As soon as I settle down after the tube-cam and can breathe normally, I’m guided into radiation. The treatment room is long and wide, with gray metal cabinets and laminated shelving on the walls. Radiation masks are lined up on the higher shelves like rows of skulls. I was fitted for mine three days ago. To construct it, gauze soaked in warm plaster was layered over my face to create a mold. Once dry, the mold was removed and plastic webbing heated inside of it to form the mask. Designed to block the radiation from damaging areas of my face outside the target area where my tonsils once were, it covers my face like I’m the diabolical killer in a cheap horror movie.
The radiation technician, Greg, comes in now and starts to get me prepped. He is chatty and smart. When I ask how radiotherapy works, he gives me an amazingly detailed answer. “It’s designed to damage the DNA of cancerous cells with photons, a basic unit of electromagnetic radiation. Cancer cells usually reproduce much faster and in far greater numbers than normal cells, but they have a diminished capacity to repair themselves. So the idea is that the ‘bad cells’ will die while the ‘good cells’ will have a chance to regenerate.” I know how critical this is. The oncology partner of the doctor who performed my neck surgery told me during a consultation last week that even if the radiation succeeds, there’s no way to know if it’s one hundred percent, and if the cancer cells begin growing again I have no chance of survival. Zero.
The radiation therapy machine looks similar to the bone scan device, only bigger and more high-tech, built with shiny white, black, and silver metal casings. I’m laid out on yet another long, cold table, this time with my shirt off so the black, pinpoint tattoos on my chest are in plain sight. These were done when I was fitted for my mask, along with two tiny tattoos on my neck. These markers help guide the radiation beams away from sensitive areas. Greg places the horror mask over my face, then sticks a white, wooden dowel into my mouth.
“You have to gently bite on the dowel the entire time to keep your jaw slightly open so radiation doesn’t pass through your jawbone,” Greg explains as two more assistants get me perfectly positioned. “That could cause unwanted damage.”
As I hold the dowel in my teeth, the electric table slides me beneath a wide, L-shaped arm that supports the large, round radiation device. It looks like the tip of a giant microscope hovering above me. As I stare at it, I flash back to dissecting insects in high school biology lab and feel like I’m one of the sacrificial bugs we used to squish between glass plates to view through our scopes.
After the clinicians leave the room to protect themselves, the device aims radiation beams from several angles of exposure to intersect at the area where my tonsils used to be. As Dr. Chasan promised, it’s painless. I can’t feel the beams of radiation at all.
Lying under this machine, it’s impossible not to contemplate what my life has become. I keep drifting back into the past, reliving the life I once led. I was fully alive then. My body healthy and strong. Important things to do. Deadlines to meet. Historic stories to tell. Every day an amazing adventure. Now I’m lying here with a skull mask over my face, biting a wooden stick, and being radiated. I’m so cold, puffy, and pasty white, I feel more like a corpse on an autopsy table than a living human being. “I love you, Morgan,” I hear myself whisper-hissing around the wooden dowel between my teeth. “I love you.”
Radiation Treatment, October 1998.
I’m placed under the giant microscope twice a week. The radiation treatments remain painless, but the side effects are miserable. They give me profound fatigue. My lips are swollen, dried, and cracked, like parched mud. My thyroid gland has been destroyed, which means I have another pharmaceutical medication to take so my body maintains its normal flow of hormones that the thyroid regulates.
My throat feels like burnt toast. Bleeding sores fill my mouth and most of my salivary function has been permanently damaged by the photons. My taste buds have met a similar fate, and my throat is so swollen and inflamed I can’t eat regular food and have to drink nourishment through a straw. Dr. Chasan has recommended Slim-Fast smoothies that are used to provide essential nutrients during weight loss programs. They taste terrible to me. If only there were a blended steak and potatoes drink on the market, maybe with a hint of red wine.
Far worse than the Slim-Fast smoothies are the appointments with Dr. Chasan, who continues to periodically force the tube-cam up my nostril and down into my throat, looking for suspect cells, which would appear as black splotches on the bright red lining of my larynx. This procedure remains an inconceivable violation and I loathe entering her office.
Two months later, just before Christmas of 1998, the radiation treatments—and the invasive tube-cam sessions—end. My voice has gotten much worse than it was right after the surgery. Now I can barely speak in a scratchy whisper that sounds like fingernails on a blackboard. Sometimes my voice disappears completely. I only have two ways to deal with this. When I’m mute, I type on my computer screen in a huge font, then wave my arms and bring Pamela’s attention to my message. When I have a semblance of voice, I put on a gadget called a “Chattervox.” It’s a plastic, hospital-green amplifier that straps around my waist where the Stim used to go when there was hope of promoting a successful bone fusion in my back. A wire runs from the amplifier to a headset with a microphone. I hiss into the microphone in deep, raw tones and my voice is amplified from the speaker at my belly. It sounds like I’ve swallowed Darth Vader.
I now understand the word invalid in a new way. The noun means someone disabled by illness and injury, but the adjective also comes to mind. I’m not valid. My life lacks validity: a broken back, cancer, no career; incapable of raising my son; helpless, hopeless. I can’t imagine how difficult all this is for Pamela. She remains upbeat on the exterior, loving and helping me in every way, sacrificing what little time she has when not taking care of Morgan. But I sense she also has a growing concern for her own future. I don’t blame her. Anyone would be frightened, uncertain, and self-protective in a situation such as this. Our relationship has become like a formal dance. We go through all the moves with great politeness and formality, plaster smiles on our faces, have superficial conversations, and barely touch the cancer issue.
My only comfort and sense of worth is when I’m with Morgan. He has no idea that I’m sick as he crawls into my lap on the recliner and we leaf through his little picture books. When I have a voice, I tell him how much I love him through the Chattervox. When I’m mute, I make silly faces and play with him by turning my hand into a crawly thing or giving him gentle tickles. I wish I could sing the lullabies I used to as he drifts off to sleep in my arms. Every time we’re together, it’s impossible not to be flooded with thoughts of leaving him fatherless. They spin through my head like a tornado and always leave me drowning in grief.
With Morgan, Winter 1998.
Despite the radiation treatments, my prognosis is poor. Although I can’t nail them down on this, as best as I can tell from pressing my doctors is that I’ll be fortunate to live for two years. I can’t help but wonder sometimes if
it’s worth it. If it weren’t for this wonderful child, I think I would choose to call it all off and find a way to quickly slip into the darkness forever.
CHAPTER 19
The Journal
STILL A JOURNALIST AT HEART, I have to know all the facts. With my life in the balance, I need them more than ever. I’ve bought a hospital “overbed table” from a medical supply store to use for setting up my computer. It has a strong frame with a serving tray secured to its legs by a single metal shaft on one side. This way, I can lean back on my recliner to ease the tension on my back, then roll the table toward my lap and swivel the tray until my computer is facing me.
The Internet is just beginning to burgeon, and there’s a new service called Google that just came out last year. It’s a search engine that helps me find online articles and information. I pore through everything I can find on throat cancer and soon begin to learn how much I didn’t know. Squamous cell carcinoma comes in various types, from easily treatable skin cancer to aggressive carcinomas that invade various organs. It can show up in the neck, the lungs, the prostate, the bladder. It’s either in situ, confined to the site of origin, or invasive, spreading to other organs. The spreading is called metastasis, and this is bad news. My cancer originated in my tonsils and spread into my lymphatic system, creating the tumor in the lymph gland on my neck. It’s considered invasive. It’s spreading. Metastasizing.
This is what Dr. Chasan meant when she said it was stage IV. In another article, I learn there are four stages of cancer, based on various factors, including tumor size, the depth of its penetration in the body, whether or not it has spread to other organs, and if it has invaded lymph nodes. Stage I is localized and the easiest to deal with. Stage IV is the worst and indicates the patient has the least chance of survival. It’s bad news.
As I read more about radiation, several articles indicate that head and neck cancers such as mine, when metastasized, are very aggressive and generally incurable with radiotherapy since the whole body would need to be treated. The amount of radiation required for this would prove fatal. I can only conclude that my treatments, therefore, were at best just a way to slow things down. But I still can’t find specifics about survival rates for stage IV oropharyngeal carcinoma. Many articles contradict one another. There’s nothing definitive. No matter how much I search, I can’t nail it down with any certainty. I want to discover some new finding that gives me hope or just finally confirms that two years is correct. It’s frustrating, and it remains the big unanswered question: What are my chances of survival?