By Petula Dvorak
Washington Post Staff Writer
Tuesday, December 16, 2008
It took me a while to figure out why my dad refused the free blanket in the cancer ward.
The lady from the Cancer Society came into his room wheeling a cart stacked with colorful blankets. Crocheted by volunteers, they offered homespun comfort to folks recovering from surgeries that had cut out tumors, lesions, slabs of skin, pieces of colon, entire breasts or, in my father's case, a lobe of his left lung.
"No, not for me," said my father, a rugged brick mason who kicked his 45-year, pack-a-day smoking habit two months before the surgery.
I took one of the blankets for him, but for days it lay untouched on the chair in his hospital room. "That's for the other people," he said, pointing to rooms where cancer battles were also being fought.
My answer about his blanket aversion came a couple of days later. The stitches were bothering him, he was sick of the hospital food, but most of all, the 63-year-old fly fisherman who bicycles to work was furious at being debilitated. He offered the entire ordeal's one bit of analysis in his thick Eastern European accent.
"All these years of smoking. I had all that pleasure," he said. "Now, I pay."
He had been beating himself up for having lung cancer. And the rest of us in the family, though we didn't want to admit it, weren't exactly showering him with forgiveness.
It's a common syndrome for this particular type of cancer, which is consistently marginalized, stigmatized, under-funded and under-studied, even though it kills more people in the United States every year than breast, prostate, colon, liver, kidney and melanoma cancers combined, according to the Lung Cancer Alliance, an advocacy group in Washington.
It is becoming clear to patient advocates that the mental health of lung cancer patients -- who rarely get the positive reinforcement, unfettered support and kindness of society -- is also worth defending.
"The blame is a double burden on people. It's bad enough to have lung cancer; now they are getting blamed for it. And now they're saying, 'If I had only not smoked, I would not be in this spot,' " said Jimmie Holland, a psychologist at New York's Memorial Sloan-Kettering Cancer Center who is the founding president of the American Psychosocial Oncology Society. Holland is often heralded as the mother of the movement to elevate the importance of psychological counseling for cancer patients, and she is particularly interested in the plight of lung cancer patients.
Of course, all lung cancer patients are not former smokers. And that is one of the campaign themes that advocacy groups are hitting hard.
"It's a huge issue. We so deeply stigmatize lung cancer as a society. We so closely bundle it with tobacco use," said Beth Ida Stern, executive director of LUNGevity, an advocacy group in Chicago. "We were taught for a very long time that if we do smoke, we bring it on ourselves. . . . The world looks at the patients and says, 'You did this to yourself.' So people feel so stigmatized, they may not seek support."
There are no pink ribbons for lung cancer on products at the mall and no special coffee blends that donate to the cause, and celebrities don't accept Oscars while supporting lung cancer research on their lapels.
Holland was most struck by that about 15 years ago, when a woman in her 50s with Stage IV lung cancer highlighted the inequities in a stark way. "Would you believe I'm sitting in this clinic and wishing I had breast cancer?" the woman asked Holland.
When you receive a diagnosis of colon cancer, breast cancer or brain cancer, nobody blames you. But society immediately makes that one-two connection between smoking and lung cancer that leaves little room for sympathy. And when the patient actually was or still is a smoker, there is an undeniable inner turmoil.
Holland likens the shame and judgment that shrouds lung cancer to the stigma that has dogged HIV/AIDS.
The statistics give credence to anyone wanting to wallow in blame. About 85 percent of lung cancer patients are current or former smokers, according to the Lung Cancer Alliance.
"The prominence of smoking in media reports on lung cancer may be contributing to the stigma that lung cancer patients say they feel, regardless of whether or not they have smoked," said Diane Blum, executive director of CancerCare, a New York advocacy group that released a study in October on media coverage of lung cancer. The report pointed out that although stories about breast cancer often feature inspiring accounts of survival, 44 percent of articles written about lung cancer over a one-year period mentioned smoking, and none of them was about a lung cancer survivor.
That is not encouraging. However, it makes sense statistically: Five years after people receive a diagnosis of lung cancer, only 16 percent of them are still alive.
Clinical studies have noted the self-flagellation of lung cancer patients. "A history of smoking correlated with increased levels of guilt and shame, regardless of tumor type. A personal identification of past behaviors as contributing to cancer correlated with higher levels of guilt, shame, anxiety, and depression," according to a study at the University of Wisconsin Paul P. Carbone Comprehensive Cancer Center.
But unless they are asked specifically about their feelings as part of a study, most lung cancer patients do not open up to their doctors.
"The majority of patients I see are former smokers. I can tell you from my perspective as a thoracic surgeon, there is an awful lot of guilt about being a smoker or a former smoker," said Blair Marshall, a thoracic surgeon at Georgetown University Hospital. "But I'm not sure it's really talked about. I think the guilt aspect of it is swept under the rug."
There is one place that the feelings are beginning to be expressed. Online forums such as the ones created by LUNGevity and the Lung Cancer Alliance allow lung cancer patients to talk honestly to one another about their disease, their smoking, their guilt and the way family members are treating them. They post photos, their frustrations, their fears and long timelines chronicling their screenings, PET scan results, the amount of Taxotere they're taking.
"I am coughing up little traces of blood. I smoke and inhale cigars. Really don't know if I can take the treatment all of you have endured. Got a million questions, I don't know where to begin."
"I had been a former smoker for 23 years, I thought I had wiped out my chances for lung cancer by quitting all those years ago. But one thing you'll discover here is that it can happen to anyone."
"You don't always want to talk with your husband or friends, family and co-workers, but coming here I feel I can really say what is on my mind without feeling that I am hurting or getting on their nerves by talking about it."
I'm pretty sure my dad won't go online and spill his thoughts, complete with emoticons and pictures of the grandkids he's "fightin' for." But, it turns out, the forums were a great place for me.
"I found out that I have lung cancer -- don't know which type until tomorrow. My only precious son . . . . will return Saturday . . . I am so afraid that he will hate me since he has been on me for years to quit smoking. You see, his dad died when he was 6 and he was the only one there when it happened. He doesn't want to lose me also."
That last posting hit me the hardest.
I have to confess that I reacted differently to the two phone calls I received in the past 12 months about my parents' health.
When I got the call that my mom had endometrial cancer, it was a body blow. My throat tightened, my stomach twisted and fear swept over my body.
But with my dad, I have to say it was different.
When the phone rang and the words "lung cancer" were spoken, my lips tightened and I slowly shook my head like a scolding mother.
Of course he has lung cancer, I thought. I had been waiting for this call my whole life. As a child raised on aggressive anti-smoking ads tucked between episodes of "Super Friends" in the 1970s, I drew the line from my dad's habit directly to his lung cancer. And blamed him completely.
"What happened in our society, we discovered that smoking caused lung cancer. We started an immense campaign," Holland said. "We decided, let's put all our eggs in the basket of prevention. And that was really sort of sad. It's taken some catch-up now to change attitudes."
That campaign is good, of course, for a younger generation. But what about the folks, like my father, who got hooked early on, when the dangers of cigarettes were relatively unknown and he, like millions of others, used the product exactly as it was intended?
At Georgetown University Hospital, Marshall said she will often remind her older patients -- the ones who received boots, pants, a helmet and cigarettes as standard-issue equipment in the military -- that things were different when they became addicted to smoking.
"It was the way we stayed awake. They told us to smoke," my dad said one day this autumn, as we walked through the woods, challenging his 1 1/2 lungs.
While he was in the hospital and I was fighting with my anger and blame, I had to remind myself that if he had been in a car accident and fighting for his life, I wouldn't bring up his past speeding tickets. Or had he been in a bicycling accident, I wouldn't chide him for not wearing his helmet. All of us engage in some sort of reckless behavior, but unlike smokers we will probably not be so universally punished for our choices should things go awry.
One of the biggest gaps in the services related to lung cancer is counseling for family members dealing with their conflicting feelings about the disease, said Maureen Rigney, director of patient services at the Lung Cancer Alliance.
"We get calls and e-mails from loved ones very frustrated that their lung cancer patient hasn't stopped smoking or from those who find it kind of difficult to make sense of the diagnosis if their loved one quit smoking long ago," Rigney said.
Groups such as the Lung Cancer Alliance offer Internet forums and phone buddies; at Sloan-Kettering, Holland organizes support meetings for patients and their families.
It makes sense. And reading the forums helped me understand some of the resentment and anger I had felt toward my father.
The best advice came to me online from a 54-year-old former smoker who likes to knit and crochet and rides a motorcycle, according to her forum profile. She said her daughter always gave her guff about smoking, making her realize it would be tough for them to fight lung cancer together:
"I told her that she was allowed one 'I told you so,' and that was it."
That was all I needed to read.
I unfolded the blanket and put it over my dad as he slept in the hospital bed.