On a recent morning, Randy Zisook ingested a barrage of pain and anti-nausea medicines, steroids and chemotherapy pills, choked down some rank iodine and drove to the hospital for CT scans checking the progression of his terminal lung cancer.
It’s been that way every morning for the 47-year-old Northbrook resident since his diagnosis earlier this year (this sentence as published has been corrected in this text).
“The only kind of care they can give me now is palliative care. It’s not curable,” said Zisook, a lifelong smoker. “If they can’t cure it, they have to make you comfortable and keep it from taking over your body for as long as possible.”
Jessica Neal typically begins her day darting off to classes at Loyola University in Chicago where she is a sophomore studying archaeology. It’s been just over a year since the 19-year-old Southern California native began to experience intense chest pains and shortness of breath, just as she was acclimating to a new city. Neal, an avid tennis player who never smoked a cigarette in her life, was found to have a massive malignant tumor spanning both lungs.
“They took out the tumor and I am in the clear,” said Neal, who was raised among nonsmokers and has no family history of lung cancer. “I don’t think it is going to come back. I should be cancer-free the rest of my life.”
Lung cancer has forced Neal and Zisook into a kind of club that no one wants to be a member of. They have become unlikely friends, engaged in a campaign of awareness and compassion in their roles as representatives for the American Lung Association in greater Chicago for November, which is Lung Cancer Awareness Month.
Their messages have a common purpose, if originating from opposite circumstances. Neal wants people to realize that lung cancer is not just a smoker’s disease. Zisook suggests parents hammer home the dangers of smoking by asking children to take five family members and five best friends and then decide which five will die.
“You have to put that right in people’s faces, and that is horrible, but it is the truth,” he said. “Sure, I always knew smoking is bad, but no one ever told me that 50 percent of people who smoke will die from it.”
The pair agree they’ve formed a special relationship. Neal has no family in Chicago, so Zisook has offered to help her through her treatments and doctor’s appointments.
“There is a bond between cancer patients,” Neal said. “You learn that life is precious, enjoy it while it lasts.”
More people will die of lung cancer than all the other cancers combined, according to the American Cancer Society. But it is the least funded, since the common thinking is that people brought on the disease by smoking.
“What we are finding is that because of that stigma, lung cancer is not financially supported in the same way as other cancers,” said Harold Wimmer, chief executive officer for the American Lung Association of Illinois of Greater Chicago. “The fact is that lung cancer is the number one cause of cancer-related deaths, but 40 percent of individuals who have lung cancer are nonsmokers.”
The disparity in per-patient spending on research each year is striking: For lung cancer it’s $1,826 per death, compared to $27,038 from breast cancer, according to 2009 statistics from the National Institutes of Health.
Another disparity: 160,000 people will die this year from lung cancer compared to 25,000 from breast cancer, Wimmer said.
The relative lack of attention means 60 percent of lung cancer cases are diagnosed in advanced stages, as happened with Zisook. When found in later stages, the five-year survival rate is just about 4 percent. For lung cancer found in earlier stages, such as Neal’s localized stage 1, the five-year survival rate is 53 percent.
Neal and Zisook are doing their part to raise awareness. And although Neal said “smoking is disgusting” she does not think people should die for taking up a bad habit.
“It is cancer, it doesn’t matter how you got it.” Neal said. “People get diabetes because they eat a lot of junk food. We don’t say, ‘oh you shouldn’t treat it because they eat a lot of junk food.'”
She and her friends raised about $600 during a walk in September, and there is a large piggy bank in her dorm where visitors are asked to feed “Mr. Pig.” All money raised will go to the American Lung Association for lung cancer research, Neal said.
Zisook is reaching out to anyone who will listen. He has produced a 5-minute video and posted it on YouTube telling his story and encouraging people to stop smoking. He also works with the Illinois Tobacco Quitline (1-866-QUIT-YES), a free service operated by trained staff. “I have a horrendous diagnosis with a horrible prognosis, and as goofy as it sounds, I’m not throwing in the towel,” Zisook said.
Zisook admits he began sneaking cigarettes at the age of 8. He recalled how he and his friends built makeshift forts from scrap metal left at construction sites in his neighborhood in Flossmoor.
“We would sit in there and smoke,” he recalled with a chuckle. “It was a little boy’s dream. I was being cool.”
His mother beat stage 3 lung cancer about 20 years ago, he said. “In the 60s and 70s everyone smoked,” Zisook said.
He quit his 3 1/2 pack-a-day habit when doctors found spots on his lungs in spring 2007. The lung cancer diagnosis came last spring.
He wants parents to tell their children more than just that smoking is bad for them. They need to keep an on-going discussion, just as they would about sex.
“People say ‘oh smoking is bad for you’ and that’s it. No one ever says that out of the 4,000 chemicals in cigarettes, there are 69 carcinogens known to cause cancer. … . They are poisoning people,” he said.
Neal knows Zisook’s prognosis is fatal.
“He is dying because of the bad habit he picked up … a lot of people did a lot of stupid things as teenagers. He has a family, and he has a lot of people who love him. He wasn’t murdering people, he was smoking a cigarette. He didn’t harm anyone, just his lungs. He is still a person and he is dying and it doesn’t matter how he got it.”
For Neal, the tumor is gone although doctors don’t know for sure if all the cells were removed, so she continues chemotherapy. She struggles to juggle her classes and volunteer work with doctors’ appointments and the effects of treatment, but said her roommates are a great support system. She dreamed of being an underwater archaeologist but now may have to stick to the land.
“I think with a lot of work I can scuba dive again,” Neal said. “I am in a lot of pain right now but hopefully in a few years my lungs will have time to heal themselves.”
Zisook used to work in the insurance business and enjoyed boating, traveling and golfing, but can no longer work or play. He suffers from constant nausea and alternating pain and numbness in his extremities caused by nerve damage from chemotherapy. The only thing in his life he regrets is smoking.
He can no longer take chemotherapy intravenously because his veins have been so badly damaged and his immune system is weak. He continues to take his 30-plus pills a day and may add a new chemotherapy drug that costs $12,000 a pill.
With recent scans showing his tumors have not progressed, he can take a short respite from chemotherapy — a joy because his hair is starting to grow back.
“I want to live peacefully. I just want what everybody wants out of life. I want the same things I wanted five years ago — financial security, love, time with my family, friends,” he said. “My life is going to be a little shortened, but I don’t have an expiration date, I don’t know when that date will come, I don’t want to know.”
– – –
By the numbers
1
Lung cancer’s rank in cancer-related deaths
40%
The percent of people who have lung cancer who are nonsmokers
$27,038
The annual amount of money spent on research per patient who dies of breast cancer
$1,826
The annual amount of money spent on research per patient who dies of lung cancer
25,000
The number of people who will die of breast cancer this year
160,000
The number of people who will die of lung cancer this year
Sources: American Lung Association of Illinois of Greater Chicago, National Institutes of Health
