- 2/12/2007
- California, USA
- Daniel Borenstein
- ContraCostaTimes.com
(Note: This is the fourth of a four part series)
About 9:45 each morning for six weeks, I walked past the warning sign (“Caution, High Radiation Area”) in the basement of Berkeley’s Herrick Hospital, propped myself up on the table and laid down. Technicians placed a preformed mesh mask over my face and shoulders and snapped it to the table. My head was locked in place as the staff members carefully nudged my body to the left or right a bit to ensure I was perfectly aligned. Then everyone left.
It was just me on that table.
The X-ray beams were turned on from next door. For each of my 15 daily blasts, the machine sounded like the tone from the emergency broadcast signal. (“Had this been a real emergency …”) It drowned out the classical music on the boom box in the corner — and it killed the tranquil effect of the idyllic birch trees and spring flowers painted on the ceiling tiles overhead.
This was the latest radiation technology for cancer treatment. The intensity of the beams could be regulated and the computer-controlled equipment programmed in three dimensions. During the 15-minute cycle, the emitting disk swept 180 degrees, from my left side to overhead to my right side. It radiated my mouth, throat and neck. The daily treatment was combined with weekly IV chemotherapy drugs.
My mouth and throat were so raw that I couldn’t eat solid foods. Mashed potatoes were too coarse. Beverages were equally challenging. Most juices and sodas were too acidic. And my taste had been altered so that tap water tasted like it came from a polluted well.
Each passing day, I ate less through my mouth and more through the feeding tube that had been surgically attached to my stomach. The staple of my diet was “ProSure,” a formula for cancer patients similar to Ensure and made by the same company. If I ate nothing else, I was told, I would need at least six 8-ounce cans per day to maintain my weight. I tried to reduce that by supplementing with soft foods (eggs, ice cream, Jell-O. But my mouth protested.
I was told that my mouth would eventually heal so that I could eat real food again. It would take as long as six months to recover my sense of taste. Meanwhile, I looked at something as simple as a frozen yogurt and felt myself salivate in Pavlovian anticipation of the cool, sweet and soothing dessert. But I would then take a bite that was essentially tasteless and burned my mouth. (When the mouth pain was too intense, I slipped liquid painkiller into my feeding tube.)
My weight dropped to 141 pounds, my lowest point in more than three decades and more than 10 pounds lighter than when my cancer was diagnosed. My face had never been so gaunt.
While I was undergoing the daily radiation, I also received weekly treatment of chemotherapy and Erbitux, the drug that caused Martha Stewart so much grief.
I joked that I understood why the housekeeping maven dumped her ImClone stock: The company’s prize cancer-fighting drug causes severe acne. Imagine Stewart tackling the problem: “Today on Ask Martha, we’ll give you tips on how to get that bloody pimple pus out of your shirts and sheets.”
Stewart was convicted of lying about her use of insider information. In 2001, she sold her ImClone holdings a day before the FDA officially rejected the firm’s application for approval of Erbitux, which slows tumor growth. It took the company two more years to obtain federal permission to market the drug.
Erbitux comes with a brochure warning patients that the most common side effect is “an acne-like rash,” usually on the face, upper chest and back. Five days after receiving my first weekly dose, my face broke out big time. I looked like the “before” picture on an ad for pimple cream.
The zits were physically striking but not medically worrisome. Indeed, the doctors and nurses saw it as a good sign because data show that the greater the rash, the more effective the drug.
The challenge of all this cutting-edge medicine is staying one step ahead of the side effects.
Example: To reduce dry mouth from the radiation, I was given two daily injections (one in each arm) of Amifostine at least 30 minutes before the treatment. And to stave off the nausea from that drug, I sucked on a dissolving pill during my morning drive to the cancer clinic.
Example: To counter the nausea effects of the chemotherapy, I took an anti-emetic sedative. That drug, in turn, causes constipation. So, I took … Never mind. You get the general idea.
Then there is the issue of immediate drug reactions. When I received one of the new chemo medications for the first time, my face flushed, my chest tightened and breathing became difficult. I remember feeling very scared and almost frozen in my chair as nurses rushed to me. Randy Oyer, my medical oncologist, was called to assist.
After I was given an antihistamine, steroid and tranquilizer, the symptoms subsided — and I was given the rest of the chemotherapy. As Randy and the nurses predicted, the problem did not repeat itself when I was given the same medication the following week.
That experience put the rest of the treatment in perspective. The Erbitux pimples seemed merely an annoyance.
I turned 50 a few days before the end of my radiation treatment. My wife, brother, sister-in-law and three friends decided the momentous birthday should not pass without a party.
It was a kind and loving gesture. But I was in bad shape. So there I was in the photos I later received: Blowing out the candles on the birthday cake I couldn’t taste and feeding myself a liquid diet through my stomach tube — all with a goofy birthday hat on my head. My face was gaunt, most of my facial hair had been wiped out and my lips were so blistered and sore that I couldn’t close my mouth. I spent much of the time curled up on the couch while others talked.
Once the treatment stopped, the recovery began. It was not merely a struggle to recover physically; it was also a quest to regain my emotional and psychological strength.
For months, my world had focused on battling to beat the cancer. Rather than spending most waking hours in a newsroom or out reporting, as I had for 25 years, I had been at home. The isolation had helped me understand that I would never be a good freelance writer working alone from my home office.
The effects of cancer treatment are a lesson in aging. I had usually eaten healthful foods (friends at work think of me as a bit of a health nut), exercised, taken care of myself and regularly seen my doctor. I figured I had covered the bases. Instead, as I looked at the photos from my birthday, I saw what I would look like as an old man. I was grateful this was temporary, that I would feel better in time. I also knew that I didn’t want to return to this damaged state of being in my old age.
I now have a better sense of the emotional agony my mother must have faced before her death. She had leukemia, and the doctors had told her they couldn’t stop the cancer. That’s a far cry from where I was in fall 2005. I had cancer in my neck, but it was in remission, and the doctors said the odds were good that I would be cured. I can’t imagine going through the discomfort I endured without the incentive of a positive prognosis. I doubt I would have had the courage to face the treatment. And I admire those who choose to fight on against great odds.
The strange thing about battling cancer is that the rest of life doesn’t stop while you’re engaged in the fight.
Ten days after my feeding tube was removed from my stomach and the chemotherapy port was taken out of my chest, I was back at work. The same job that I was about to start when I got my diagnosis was waiting for me seven months later.
On my first day back, the publisher invited me to drop by. I was barely seated in his office when he popped the question: “How did it change you as a person?”
I’d been asked the “life changing” question a few times before. But, given the setting and the importance of the questioner, I felt the need to sound smart as I answered. I failed, bumbling through my answer with something, as I recall, about being more willing to take risks. I hadn’t thought carefully about the question before.
There were physical changes during the cancer treatment. I was 10 pounds lighter than when I started. My beard was gone; part of it would never grow back because of the radiation to my mouth and neck. At first, the hair on my head was thinner and straighter than what fell out from the chemotherapy. But the curl has come back.
There’s a recurring ringing in my ears, likely from the chemotherapy or medication. And my salivary glands are so damaged that I often carry a water bottle to quench my frequent dry mouth.
But the bigger question is whether the cancer changed me as a person. During the treatment, I ventured down paths I had never traveled before. I had never thought seriously before about death, about my own mortality, yet there I was confronted with it. I am, without a doubt, more grateful than ever to be alive, to have a job and to have health insurance.
But am I more patient? Calmer? More forgiving? Kinder? Gentler? More spiritual? I’d like to think so, but I’m not really sure. I don’t move as fast as I did before the cancer — in part because the urgency doesn’t seem as necessary. I spend more time alone, just thinking, than I did in the past.
Sometimes, life seems surreal: I feel detached, watching myself walk through my daily tasks and amazed at how much my life has changed. I am not the same person I was when I started this wild adventure. I suspect the transformation is not yet over, and I’m unsure where it will take me.
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