In the end, lung cancer left Jerome Grant voiceless,Â a breathing tube in his windpipe.
He could say nothing when his wife Dawn spoke her last words to him: â€œI love you, you know that?â€
He gave her a thumbs up. Then he closed his eyes and was gone.
The 52-year-old Louisville man was one of about 10,000 Kentuckians a year taken by cancer in a state where the disease consistently kills at the highest rate in the nation. Experts say the biggest culprit is lung cancer, which strikes and kills Kentuckians at rates 50%Â higher than the national average. But Kentuckyâ€™s death rates also rank in the Top 10 nationally for breast, colorectal and cervical cancers.
â€œItâ€™s really been driven by three major things: obesity, smoking and lack of screening,â€ said Louisville gastroenterologist Dr. Whitney Jones. â€œOur state is completely inundated with risk factors.â€
Smoking, a stubborn vestige of the stateâ€™s tobacco legacy, is at the root of most lung cancers, although other environmental causes such as radon play a part as well. Obesity, a risk factor for several cancers, also hits Kentucky hard, afflicting more than three in 10 residents. Poverty, lack of education and doctor shortages mean residents are less likely to get screenings that can find cancer early â€”Â or effective treatment.
Indeed, cancer preys upon the rural poor across the nation, and Kentucky is both rural and poor. Although itâ€™s nationally known for giving half a million residents insurance through the Affordable Care Act, the law’sÂ rollout faces an uncertain future, since newly electedÂ Gov.Â Matt Bevin has pledged to scale back Kentuckyâ€™s Medicaid expansion and dismantle its online insurance-shopping site. AndÂ coverage is only one key to health care; itÂ doesnâ€™t automatically give people the other necessary keys, such as health â€œliteracy,â€ doctors who will take them, time off from low-wage jobs or reliable transportation to appointments.
Despite attempts to curb deaths by the state and its health care system â€”Â and signs of hope such as increases in cancer screenings among Medicaid patients â€”Â Kentucky remains far behind other states in reducing the toll of this dreaded malady that touches nearly every family.
So too many continue to suffer the same sort of devastating loss Dawn Grant did when cancer left her a widow in her 50s. Every day she misses the â€œgood, generous, kind personâ€ who was stepfather of her two children, caregiver for his sick fatherÂ and a motorcycle enthusiast who filled her life with adventure.
â€œI just thought weâ€™d grow old together,â€ she said. â€œBut all of a sudden, youâ€™re on your own.â€
Kentuckyâ€™s lung cancer numbers from the National Cancer Institute are staggering.
Incidence per 100,000 people: 92.4, compared withÂ 60.4 nationally. Mortality per 100,000:Â 68.8Â â€”Â around 120 in the hardest-hitÂ Appalachian counties â€”Â compared withÂ 45 nationally.
Thomas Tucker, director of the Kentucky Cancer Registry, said lung cancer is by far the biggest reason for the state’s continual struggle with cancer mortality. â€œThe problem with lung cancer,” he said, “is weâ€™ve always found it late.â€
One reason is that most lung cancers donâ€™t cause symptoms, so people don’t know they’re sick until the disease hasÂ spread so far they canâ€™t be cured.Â Until recently, thereâ€™s been no screening test, and todayâ€™s preventive low-dose CT scans for longtime smokers are far less routine than tests like mammograms or colonoscopies and are not always covered by private insurance.
Jerome Grant, an asphalt worker, had a cough for about a year, but his wife thought it was just sinus drainage. He also seemed a little run down, but he was working six days a week and caring for his dying father at the time. Still,Â Dawn Grant, who works as an administrative assistant at KentuckyOne Healthâ€™s James Graham Brown Cancer Center, eventually began to suspect bronchitis or walking pneumonia, andÂ insisted Jerome go to an immediate care center.
There,Â he got a chest X-ray in May 2011.Â Follow-up scans showed cancer in his right lung and metastases in his brain.
After two weeks of radiation and one chemotherapy treatment, he was hospitalized twice in rapid succession. But nothing could save him. He died in early July.
â€œIt all happened in six weeks. It was like a whirlwind,â€ she said. â€œHe went down so fast.â€
Like many lung cancer victims, Jerome was a longtime smoker. Kentuckyâ€™s smoking rate is consistently first or second in the nation, with the habit most common among low-income Kentuckians and rural residents in tobacco country.
â€œFor many years, Kentucky has had a quarter of adults smoking,â€ said oncologist Dr. Goetz Kloecker, a lung cancer specialist with University of Louisville Physicians. â€œI have patients who started puffing at 8, 9 and 10 years oldâ€¦Itâ€™s part of the culture.â€
Because of that culture, â€œcigarettes are still cheaper than in other places,â€ Kloecker added. â€œIf you go to Chicago or New York, there are fewer teenagers starting to smoke. The higher the costs, the lower the smoking rate.â€
A growing body of research shows smoking may not be acting alone in some cases. The risk of lung cancer is much higher for smokers exposed to carcinogens such as radon, asbestos, arsenic or chromium.
The U.S. Environmental Protection Agency classifies a wide swath of Central Kentucky as having the highest potential for indoor radon gas, the second-leading cause of lung cancer. And research by Tucker and others has shown high rates of arsenic and chromium in Appalachian residents.
Environmental carcinogens can also contribute to lung cancer in non-smokers. Nationally, up to 20% of those who succumb to lung cancer are non-smokers, although this includes people exposed to secondhand smoke as well as environmental carcinogens.
On top of all this, lung cancer remains difficult to cure despite new surgical techniques and other medical advances. The five-year survival rate is less than 20% overall.
At the most advanced stage, itâ€™s less than 1%.
Other types of cancer can be just as deadly when found late â€”Â whichÂ still happens even in diseases with well-known screening tests such as colorectal, cervical and breast cancers.
When doctors found Kenneth Kummerâ€™s cancer, they didnâ€™t even know where it started because it had spread so far in his body, with tumors in his colon, stomach, gall bladder, liver and pancreas. A biopsy showed the disease originated as colorectal cancer, for which he had never been screened. He had two risk factors for the disease: He was a longtime smoker who was overweight for much of his adult life.
Doctors started chemotherapy in March 2014. Kummerâ€™s daughter Shannon McCowan recalled how her son A.J., who called him â€œpawpawâ€ and was â€œthe light of his life,â€ gave him a Buzz Lightyear doll and said: â€œBuzz will give you the power to overcome this.â€ Kummer brought it to every doctorâ€™s appointment and chemotherapy session, snapping pictures for A.J.
But despite the doctorsâ€™ best efforts, the cancer decimated Kummerâ€™s body, causing him to wither from 235 pounds to 110. He died April 12 at age 62.
SylviaÂ said he was a kind spirit andÂ theÂ love of her life, helpingÂ raise their daughters and several foster children, servingÂ as a volunteer firefighter and playingÂ Santa Claus for the family during the holidays. They started out asÂ high school sweethearts and wereÂ married for 42 years.
Since his death, sheâ€™s nearly been overcome when sheâ€™s found his flannel shirts and jeans lying around, or when she recently spotted the beginnings of a dollhouse he wanted to build for her. The base and the chimney were all he had time to finish.
Kummer’s family will never know if a screening could have saved him, and many other Kentuckians are taking similar chances by not getting recommendedÂ colonoscopies,Â Pap smears to check for cervical cancer or mammograms to detect breast cancer. Pap smears and colonoscopies can even find pre-cancerous changes, which can be treated before they turn into cancer.
For cervical and colorectal cancer, â€œthe single most important thing is the screening,â€ Tucker said. â€œScreening, we believe, is also very effectiveâ€ in breast cancer. â€œBut there is overwhelming evidence we are under-screening.â€
For example, federal figures analyzed by the American Cancer Society show 46.8% of Kentucky women 40 and older got a mammogram and clinical breast exam in the past year, compared with around 60%Â in states with the best rates; and 81.6%Â of Kentucky women 21-65 years old got Pap smears in the past three years, compared with around 90%Â in states with the best rates.
Experts say many Kentuckians donâ€™t know the screening recommendations and have lowÂ health literacy overall, which goes hand in hand with poverty and low education levels. One in five Kentuckians lives below poverty, the fifth-highest rate in the nation, and 21%Â of adults over 25 have at least a bachelorâ€™s degree, compared with 29%Â nationally.
Shortages of doctors and cancer screening and treatment facilities make things even worse. A workforce capacity study conducted for the state by Deloitte Consulting in 2013 found that Kentucky needed 3,790 more doctors just to meet pre-ACA demand and would need many more by 2017.
Complicating matters, rural Kentuckians often live long distances from specialists and cancer centers, and may face transportation problems as well. Tucker cited research showing the longer the drive to medical facilities, the later cancer is diagnosed.
Sometimes, people just donâ€™t know the importance of screening, or, in the case of colonoscopies in particular, simply donâ€™t like the idea of the procedure. Vernon Hyberger of Louisville, who had colon cancer in his family, just didnâ€™t like getting colonoscopies and had no sign of a problem, said his daughter, Chris Thompson. So he didnâ€™t get the screening that could have caught the cancer that killed him in 2011 at age 84.
Thompson said cancer stole the patriarch of a clan neighbors used to call â€œthe â€˜Leave it to Beaverâ€™ family.â€
â€œHe was just one of a kind,â€ a German Catholic gentleman who devoted himself to God and family, she said. â€œThe best father in the world.â€
Just over half of all cancer deaths in Kentucky are from lung, breast, colorectal and cervical cancers â€”Â diseases that Tucker said people and governments can do something to prevent.Â So he suggestsÂ â€œwe focus on the ones we can impact.â€
Doctors are optimistic aboutÂ signs of progress, particularly in colorectal cancer. The Colon Cancer Prevention Project, founded by Jones, has raised money and awareness of the disease across the state and pushed for programs such as free screening for low-income, uninsured residents. Since the group started 11 years ago, the screening rate has more than doubled to 69.6%, andÂ colorectal cancer deaths are down more than 25% statewide.
Other organizations areÂ trying to control all types of cancer,Â including the Kentucky Cancer Consortium, made up of more than 70 groups working on prevention, early detection and treatment; and the Kentucky Cancer Program, which aims to reduce incidence and mortality through education and research. Partners in the fight include hospital systems, doctor groups and state health officials.
Stephanie Mayfield Gibson, commissioner of the Kentucky Department for Public Health, said the ACA has started to make a difference, as screening levels among Medicaid recipients have risen since the lawÂ took effect. Recent state data showÂ those receiving breast cancer screenings rose 111% from 2013 to 2014; those receiving cervical cancer screenings rose 88%, and those receiving colorectal cancer screenings rose 108%.
â€œGetting insurance is one huge step toward improving overall health,â€ Mayfield Gibson said.
She said the state is committed to strive toward better health in all its policies, and cited a recent smoking ban on certain state property, andÂ an initiative launched in 2014 called kyhealthnow, which aims to reduce deaths from chronic diseases such as cancer. Despite such efforts, however,Â the health department devoted only 2.3% of its $380 millionÂ 2015 budget to cancer specifically â€”Â $3.6 million in direct spending and about $5.2 million in indirectÂ spending for programs like radon and smoking cessation.
Doctors say making significant strides against the diseaseÂ will take an unwavering commitment and bold action from the state, the medical establishment, advocacy groups and residents. Snuffing out smoking will require higherÂ cigarette taxes and more spendingÂ on tobacco control, they say, and obesity will be a huge challenge given the poor diets and sedentary lifestyles of many Kentuckians.
ButÂ any gains against the disease come too late for thousands of Kentucky families â€”Â such as Kummerâ€™s.
Since his grandfather died of colon cancer, A.J. sometimes curls up in Kummerâ€™s old favorite chair, where they used to cuddle together to watch television.
â€œHe knows his grandpa is an angel,â€ McCowan said. â€œHe still has his moments, though.â€
The boy also has mementos, such as one of two matching, white stuffed ponies he and Kummer once shared.
The other is in his pawpawâ€™s casket.