Authors: Brad Willis
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 book 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.”