by Brad Willis
THURSDAY, APRIL 1, 1999
It’s a blustery morning with huge clouds, high winds, and occasional light rain showers. I’ve bundled you up, Morgan, tucked you into your stroller and wrapped you in a cozy blanket. We cruise around the block looking at all the flowers, smelling the lilacs and gardenias in the humid air, listening to the birds. You love the outdoors, especially when it rains. We have a perfect time together. I hope we can make this a regular routine.
Despite the fact that the scar has finally healed, my neck is becoming tender again. There are new sore spots and, rubbing them all the time, I think I feel little lumps. All my doctors have acknowledged is that if the cancer returns, my death is certain. But they never seem alarmed during monthly checkups, so maybe it’s just fear. I can’t be sure, so I’m trying to keep a journal for Morgan to read when I’m gone, hoping he’ll have some memory of his father.
WEDNESDAY, APRIL 7, 1999
Dear Morgan. You’ll be two years old in seven months. I’m planning to set up a film camera on a tripod and tell you the story of my life. I want you to see the places I traveled to and the news reports I did. I hope you’ll view it after I am gone. I can’t get to it quite yet. My back feels like it’s broken all over again right now. But look for it, okay?
Ever since the surgery and radiation, I’ve been even more sedentary, but I’m eating as much as or more than ever. I don’t need so much food. It’s just for comfort. Another way of escaping myself. As a result, I now weigh more than 220 pounds. Morphine has been prescribed on a permanent basis to help with my growing back pain and the residual discomfort from the radiation treatments. It comes in slow-release patches that I stick on my chest and also in stronger pill form for pain emergencies. I still take Vicodin, Valium, Motrin, and Prozac, even though they’re hard to swallow down my swollen throat, and have been prescribed Ritalin and Dexedrine to stimulate me since I’m always so lethargic.
I cling to my drugs out of fear and never miss a dose, and although they help manage physical and emotional pain, they’ve completely masked my Soul. I’m constantly stoned—jacked up on stimulants, numbed by narcotics, dazed by antidepressants, and pickled on alcohol. It’s become a weird sort of reality for me, and I’m slowly turning into a person I don’t recognize.
WEDNESDAY, APRIL 14, 1999
You saw a wagon on the neighbor’s porch this morning, Morgan, and it transfixed you. You are only sixteen months old and just beginning to speak, but you pointed and said, “waaauuun!” It’s the first time I’ve ever seen you really want something. During your nap I snuck out to the local hardware store and bought you a red wagon. I remember my first wagon and my father pulling me around in it. This is like passing the torch. You should have seen your face when I surprised you with it!
My time with Morgan is now spent in gentle play. I have to hand him off to Pamela for most of his meals, naps, and diaper changes. Despite how difficult I can be, she continues to be loving, supportive, and giving. She recently bought a cookbook for cancer patients and has me choose recipes for her to prepare. She also helps me in a million other little ways, especially when I’m immobilized by pain episodes. I feel like a huge burden. It depresses me even more. I know it’s immature. Another form of self-pity. I try to snap out of it, but I can’t seem to do it.
SATURDAY, MAY 1, 1999
Nature, Morgan, is a miracle. I gaze at the morning sun from my recliner here by my computer, listen to the birds sing, and watch the flowers bloom. Then I turn on the monitor that lets me listen to you in your bedroom and I can hear you breathe while you are still asleep. It sounds like the song of all life.
I’m still obsessed with finding out what my chances of survival are, and I’m getting fixated on whether or not I had the right treatment. Shortly after the surgery on my neck, the first oncologist I saw, Dr. Saleh, wanted me to have chemotherapy as well as radiation. Dr. Low, who performed the tumor surgery, was against chemo. Because he was my surgeon, I chose to take Dr. Low’s advice, but after all the Internet research and conflicting data, I want a new opinion, even though I’m already seeing so many doctors I’m completely confused.
My health insurance company approves this request and I’m sent to see another ear, nose, and throat specialist named Dr. Jimenez. I hate having to find a way to lie down in the reception area so my back doesn’t flare up. I also hate that the doctor is running an hour behind. When I’m finally called into his office, he seems hurried and distracted to me, and it makes me grit my teeth. But I also realize that the drugs make me tense, irritable, and impatient. I’m always annoyed with people, especially most of my doctors. I want everyone to be prompt. Give me clear and concise answers. Tell me what I’m hoping to hear. I’m still trying to play investigative reporter, looking for contradictions, mistrusting everyone, always finding faults.
After a few minutes of reading through my file, Dr. Jimenez glances up and says, “Your case is highly unusual, and very rare, especially for a nonsmoker. I think you should have had much more aggressive treatment, including chemotherapy.” The doctor expresses frustration with the HMO system and the medical group I belong to, even though he’s a member of it. He wants me to see a chemotherapy expert outside the group named Dr. Kourany. “He will tell you if you should have chemo, and he will be straightforward about your chances for surviving.”
I’m losing track of all the doctors I’ve been seeing. The incessant notes I take at every appointment are stuffed in files and folders without the organizational skills I once had as a journalist. It’s incredibly frustrating, and the idea that Dr. Low’s advice might have been wrong infuriates me. I hate the idea of seeing another specialist, but I need to know: Did I get the best treatment? Am I going to die? If so, how long do I have?
FRIDAY, MAY 7, 1999
(A NOTE TO MYSELF)
I carried Morgan out to the yard this morning. He is so small and light, yet it killed my back. Soon, I’m not going to be able to carry him upstairs to bed anymore, and he loves this so much. I don’t want to increase the pain meds, but I need to ask the doctor about it today. There’s no other way.
Despite everything, we still manage to have some good family times, with limited outings and social occasions, but my moments of clarity and freedom from discomfort are far too few. My voice comes and goes. My back comes and goes. Most of my time is spent in bed or on the recliner. When I do have energy, I devote it to Morgan. Spells of darkness, anger, and delusion erupt more frequently these days. My son never sees these, but his mother does. It’s like I’m simultaneously shivering with fear and boiling with anger whenever we’re together. I know I’m not showing up for her. Instead, I’m taking it out on her. There are those special people who face great life-threatening challenges with amazing dignity, strength, and courage. They are inspirations and role models for us all. I wish I could say I’m one of them, but I’m not even close.
TUESDAY, MAY 11, 1999
A recent bone scan shows deterioration in the disc between my third and fourth lumbar vertebrae, the level just above the failed surgery. I took you to the park this morning, Morgan, but as I sat on the grass with you in my lap, the disc lightly herniated. I was frozen in pain and could barely push your stroller the half block to home. I’m now on ice and another heavy dose of drugs. My whole body is gripped with tension and fear. I’m so sorry. All I want is to be healthy and whole for you.
I’ve finally gotten an appointment with Dr. Kourany for the second opinion on my treatments and prognosis. The reception area is tiny and the doctor is late, so his secretary takes me into the doctor’s office so I can lie down on a couch. It’s an expansive room, with rows of bookshelves lining the walls, filled with medical texts.
After a half-hour on the overstuffed leather couch that faces the doctor’s massive desk, I feel impatient. I get up and hobble over to his library, looking for anything that might give me statistics about throat cancer mortality rates. There’s nothing. Moving back toward the couch I notice the corner of a b
ook concealed beneath a stack of files and papers on his desk. It seems like a book patients are not supposed to see, but I slip it out anyway. The title says something about cancer findings. I take the book and lie back down, thumbing through it as quickly as I can, feeling like I’ll be scolded if the doctor walks in and catches me.
In the table of contents, there’s a chapter on head and neck tumors. I go to it immediately, still wary of the doctor’s arrival. Most of the language and data is far beyond my comprehension, but things start jumping out as I rush through the chapter. Head and neck cancers are aggressive tumors. He must have looked through this in preparation for my appointment. Involvement of even a single lymph node is associated with a marked decline in survival. I had a major tumor in one lymph node and several other nearby nodes removed as well. Chemotherapy does not confer an additional survival benefit. So Dr. Low was right. There is significant risk of second primary tumors developing. The prognosis for patients is poor.
Suddenly, the door opens and I quickly slide the book under the couch. Dr. Kourany is an imposing presence, tall and broad shouldered, with thick black hair and a moustache. His name is Middle Eastern, and he looks just like the stern border guard I had to bribe when I crossed from Turkey into Northern Iraq while covering the Kurdish refuge crisis after the Gulf War. “What can I do for you?” he asks in a deep, commanding voice, not even acknowledging being an hour late.
As I explain my story, he thumbs through my file, never once looking up. When I mention I was in the Gulf War and wonder if exposure to something there might have caused this, he finally looks up, stares me straight in the eyes, and says forcefully, “It wasn’t a war. It was a massacre!” He’s literally shaking with anger and I finally get it. He must be from Iraq. Many innocent people were killed during the bombing of Baghdad. Perhaps some were his family or friends.
“You’re from Baghdad?” I venture. “Yes,” he says gruffly. I’ve touched a nerve. “I’m sorry about the war,” I respond and try to get back on topic, but he quickly interrupts, “You should not have had surgery or radiation. You should have had chemotherapy. It’s too late for that now. But it’s no matter. Chemotherapy doesn’t save the life, it only slows things down.”
He seems to be contradicting his own book, but I’m afraid to confront him with this or let him know I took it from his desk. “So what are my odds of survival?” I ask. “Two years,” Dr. Kourany says abruptly as he stands up, signaling it’s time for me to leave. “Two years from when the diagnosis was made. There’s nothing I can do for you.” With that, he turns and walks out through his private entrance door before I can say, “I thought so.”
THURSDAY, JUNE 17, 1999
Morgan, you took my hand this morning, as you so often do, pulled me off the recliner, and “runwalked” me to the front closet, pointed to your box of bubble makers and dragged me out front to blow bubbles in the morning air. Then you did a “Daddy attack,” having me lie on the grass as you climbed onto my belly and we rubbed noses and laughed. You really are a “shining light by the sea,” and I think you are trying to heal me in your own little way. I love you so much for it.
I’ve joined a new church just two blocks away, only because it’s closer and easier to get to. The pastor, Father David, is in his early forties, lean and wiry, with short, wispy brown hair and a glimmer in his eyes. He is as Irish as Father Joe, and as charismatic—always smiling and filled with energy. He comes to visit me at home once a week and prays for a healing. In the quiet moments I have to myself, I find I’m opening more to inner awareness, but not as a religion. To me, it’s a spiritual awareness, a search for deeper meaning in my life, a way to try to cope with my dark emotions and accept that I probably have just a short time left on this Earth. But it’s in its infancy, like a tiny seed sprouting beneath the soil trying to push through the crust of the hard earth and not making much progress.
The cycles of back pain and sickness are tormenting. The ice pick episodes strike periodically despite all the drugs, and the malaise I felt when I was diagnosed with cancer keeps returning, like a dark, malevolent presence invading my body again. It’s not as intense as before, but it keeps hanging around and it scares me out of my wits. It’s often hard to swallow and my throat sometimes bleeds. I can’t keep my fingers off the tender nodes on my neck and am always pressing them, wondering if cancer is spreading through my body.
And I’m totally confused. Was there a screwup? Should I have had chemo? Two doctors say yes, but the book on Dr. Kourany’s desk says it doesn’t confer any survival benefits. I guess that means, like he said, it just slows things down. One thing seems certain: I don’t have much time. Two years. I can’t forget those words. I was diagnosed in September of last year. That leaves me less than a year and a half to go.
MONDAY, JUNE 21, 1999
Yesterday was Father’s Day. You gave me a card that you drew. My throat was bleeding and I had to say thank you through the Chattervox. It was a moment filled with joy, yet I felt a deep depression that I couldn’t shake off. As I write this, hot tears are streaming down my face. I wonder if this is my final Father’s Day with you. I can’t stop worrying about not being here with you and for you.
“Pentagon Denies Claims of Gulf War Illness.” The story is buried in the back pages of The New York Times today. The article doesn’t surprise me. I’ve long had a hunch that it might have been something I was exposed to in the Gulf that caused my cancer. Maybe some chemical weapon used by Saddam that no one ever discovered. As I dig into the article, I find out it wasn’t Iraq that used these types of weapons; it was America.
More than a hundred thousand Gulf veterans are sick and almost ten thousand have died since the war, but it’s being hushed up. After years of denial, the Department of Defense is finally admitting that U.S. air campaigns deliberately blew up large caches of weapons in Iraq, sending clouds of toxic debris toward its own ground troops. As I suspected, the article indicates that the MOPP gear, the masks, and the chemical uniforms that soldiers and war correspondents were issued were of poor quality and little use.
It gets worse. There was an invisible enemy on the battlefield: armor-piercing shells made with depleted uranium used in American tank, anti-aircraft, and antipersonnel artillery. Depleted uranium ordnance is denser than lead, pierces better, fragments more easily, and also bursts into flames. It was cheap for the Defense Department to obtain because it’s a waste product of the nuclear-bomb program. It was highly effective, but it also filled the battlefields with toxic radiation that is carcinogenic. I remember peering into Iraqi tanks that were freshly punched full of holes from these shells. This must be what I breathed into my throat. Was it our own bomb attacks that made me, and thousands of soldiers, terminally ill? The thought enrages me.
SATURDAY, JULY 17, 1999
Morgan, you and I have entered a joyous new world of play. I make up silly Daddy games, pretending my hand is a tickle monster. You catch on immediately and create your own tickle monster to get me back. Then I become all your stuffed animals at breakfast, each encouraging you to drink your milk. In the middle of the fun this morning, I lost my voice again. I see how it disappoints you, and it crushes me.
I’m continuing to investigate the Gulf War Syndrome. I know it will not do anything to cure me, but I need to know the facts. After endless unanswered phone calls to numerous old sources, I finally reach a Marine general I became friends with during the war.
“I can’t say anything on the record,” he tells me. “You can never use my name. I would have to deny we ever spoke.” He must protect his career. When I agree to these terms, he confirms my findings. Many of his soldiers became sick after the war. Several died. He believes the depleted uranium played a major role. It’s a moral dilemma for him and I can feel his distress.
“I wish I could bring back my men,” he says with remorse, “but I can’t. That’s all I can say. Good luck.”
TUESDAY, JULY 20, 1999
There is a painful lump in my thro
at. I had to return to the throat specialist yesterday for another assault down my sinuses. I am tired of being poked, prodded, and examined. The new oncologist who oversees my case now, Dr. Redfern, says the lump is just swelling and there’s no sign of a new tumor. But he confirmed this morning that I’ll be extremely fortunate now to live more than a year. I had to really press him to get this out of him. I told him I have a solid pact with you, Morgan, to confound all the experts and live for years. I wish I believed it was possible, but I honestly don’t feel I’m going to last much longer. I took you to the pool at the spa afterwards. Having the support of the water is the only way I can still hold you and toss you in the air. My God, I love you beyond belief and want to be your daddy for years and years to come.