The following is Part 2 of an excerpt from The Monsanto Papers, a new book by journalist Carey Gillam.
The book tells the true life tale of Lee Johnson, a California groundskeeper who was diagnosed with terminal cancer he alleged was caused by his exposure to Monsanto’s Roundup herbicides.
Lee wouldn’t think about the sprayer accident again until many months later, when an odd-looking scaly lesion popped up just above his right knee. It itched and cracked and oozed. As time passed, the patch near his knee was matched by another on his arm. And another on his torso. Small bumps the size of BB pellets sprouted out of his skin. Lee changed the laundry soap and dryer sheets his family used and tried an assortment of creams, but nothing helped. Dread grew with every new spot that erupted. Eventually, nearly Lee’s entire body, including his face and scalp, was covered in painful sores. Some became infected, including one on his head.
As his condition progressed, Lee’s once unmarred skin broke open at the slightest touch in some places, and wearing clothing became almost unbearably painful. A lesion even developed on one of his eyelids, making it impossible for him to open the eye without grimacing in pain. The softer the skin where the lesions sprouted, the more searing the pain, Lee learned.
Strangers started to stare when Lee went out. His sons’ friends asked if he’d been burned in a fire or suffered from some disfiguring disease. “What’s wrong with your dad?” became a common question for Ali when Lee attended a football practice. He took to wearing long sleeves, long pants, and large sunglasses in public, hoping to avoid the pitying glances from strangers.
In the early stages, when the skin eruptions were fewer, flatter, and less painful, Lee could still sometimes tell himself they might just be part of a weird rash. He kept going to work as usual and kept doing his regular rounds, including spraying weed killer. He convinced himself that the skin problems would resolve themselves, just as the bee stings and bloody scrapes he suffered on the job always had. But when the sores spread to his face, Lee had had enough. It was time to see a doctor and, he hoped, find a medicine that would clear it all up.
“I don’t really know what this is”
The Vallejo public health clinic was not a large facility, and the physician who saw Lee was at a loss for how to help him. She pulled out a reference book, and together she and Lee looked through pictures of various skin ailments, hoping to find a match.
“I don’t really know what this is,” she admitted to Lee.
Lee’s next stop was a neighborhood dermatology practice. A lovely dark-haired physician’s assistant examined him with a worried frown. Like the public health doctor, she was not certain what she was looking at. The best plan was to biopsy a lesion and send the tissue to the cancer experts at the University of California, San Francisco. They would know what it was, she told Lee.
The results, when they came back, were not good. Lee was told he had squamous cell carcinoma (SCC), a type of skin cancer typically caused by long-term exposure to the sun or other ultraviolet radiation. Overall incidence of the disease has jumped by 200 percent in the past thirty years, killing an estimated fifteen thousand Americans per year.
The doctors emphasized to Lee that the cancer was very serious— unlike some other forms of skin cancer, SCC can metastasize into a patient’s lymph nodes and spread quickly. But it can also be very treatable: patients who undergo surgical removal of lesions, as well as radiation and immunotherapy, generally have high survival rates. This was not a death sentence, he was told. Many patients improved significantly with something called photodynamic therapy, a treatment that exposes skin to certain drugs and types of light in a combination that kills the cancerous cells.
Skin cancer made sense, Lee supposed. He did work outside; he always had been active and athletic and enjoyed the California sunshine. It was stunning news, but Lee took it in stride. He was otherwise healthy and active and felt sure he could beat the disease now that he knew what it was.
The next several weeks and months became a blur of doctors, treatments, and more tests, along with mounting medical bills, which Lee struggled to keep up with. There was some dispute over the diagnosis— was this really SCC or something more insidious? The doctors did biopsies of his skin and his lymph nodes and took extensive scans in a probe for more complete answers. Lee had health insurance through the school district, but it didn’t pay for everything, and deductibles and co-pays added up fast, even as it seemed to take far too long to find answers.
Eventually, doctors would determine that though the lesion on Lee’s thigh was SCC, Lee also had mycosis fungoides, a type of non-Hodgkin lymphoma that shows up on the skin but can spread through the body, including to the lungs and brain. It begins when certain white blood cells, called T cells, become cancerous. The exact cause of mycosis fungoides is not known, though it does tend to afflict men twice as frequently as it does women, Lee learned.
Through it all, Lee wondered about the sprayer accident. It had been less than a year from the day he was drenched in the pesticide to the day the lesions started showing up, and he could not think of anything else that might have triggered the disease. He started trying to find answers online, researching information about the toxicity of Monsanto’s products, but as far as he could tell there was no one else like him—no one who had developed this type of cancer from using a Monsanto weed killer. He called a poison control hotline, but if there was information linking cancer to the chemicals he had been using, Lee wasn’t finding it.
“I just want to die”
In November of 2014, Lee called Monsanto directly after finding a phone number for the company on the internet. A woman who worked as a product support specialist listened to Lee describe his accident with the tank sprayer and his concerns that it might be the cause of his cancer. She promised to try to find someone who could call him back with answers to his questions, documenting Lee’s description of this sprayer accident and his skin lesions in an email to one of Monsanto’s medical experts. “His entire body is covered in this now and doctors are saying it is skin cancer,” she wrote. “He is just trying to find out if it could all be related to such a large exposure to Ranger Pro. . . . He is looking for answers.”
Lee never did receive a call back. With no proof to back up his suspicions, he continued to work as he could, continuing to spray even as he underwent treatments for his cancer.
Lee’s doctors did not seem to share his curiosity about a cause. One of his doctors would later testify in court that she had not spent much time trying to figure out what had triggered Lee’s condition because her focus was on how to get him better.
By late 2014, Lee had a team of doctors working to rein in the cancer with an aggressive treatment plan that often felt harder to bear than the disease itself. The lesion near Lee’s knee was surgically sliced off. He underwent a round of radiation, and then another. Immunotherapy was next. An alternative to traditional chemotherapy, immunotherapy uses biological substances to try to strengthen the body’s immune system to fight cancer. The treatments made Lee so sick some days that he couldn’t get out of bed, couldn’t eat, couldn’t make it to watch his kids play sports. Family trips to the beach became a thing of the past. Even a dinner out with the family became too hard for Lee to bear. His skin, still marred from the lesions, became even darker after the radiation, and looking into the mirror above his bathroom sink, Lee didn’t recognize himself.
Many nights, Lee would cry quietly into his pillow, trying not to wake Araceli or the boys. At other times, he seemed to be in shock, retreating into himself. The exhaustion and pain took a toll on his once razor-sharp attention to detail, leaving him feeling as if lost in a fog. Araceli worried that he was depressed, and she noted that each day, her husband seemed to be thinner, quieter, fading away.
One day as Lee struggled to dress himself, Araceli saw that his clothes hung off his wasted frame. His feet were so swollen and covered in the oozing sores he called “stingers” that he cried as he tried to pull on his shoes.
“I just want to die,” he told her, sobbing.
Later, much later, Lee would remember that period—as hard as it was—with longing. Though the days and nights were often filled with pain, frustration, and fear, those months also represented a cushion of time when Lee still could envision a long future, a time when he believed that he could regain his health and watch his children grow up.
There were periods when the treatments seemed to be succeeding and he would feel good enough to go to his job, to take his boys to the park, or to work on writing a song he planned to perform one day.
But then there was another work accident, another accidental dousing of weed killer when a backpack sprayer he was using tore and leaked herbicide down his neck and back. Lee emailed his doctor to alert her to the exposure. “Hopefully it doesn’t send my current situation into a frenzy,” he wrote.
Lee’s fear soon became a reality as the lesions that had seemed to settle and soothe came back with a fury, spreading pain like wildfire across his flesh, leaving him more scarred. And more scared. Lee was now fully convinced that his cancer was connected to the chemicals he’d been spraying, and he refused to continue his work applying the weed-killing chemicals. The school district provided some money for a while but eventually ended disability payments.
The loss of income hit the family hard. The rental house with the smooth marble countertops, leafy trees, and large backyard was now a luxury of a past life, and the family squeezed into a tiny two-bedroom ground-floor apartment near a busy highway. It was cramped and dark, and Lee hated it. Weeds overran the dirt patch near the front door, and paint peeled off the siding of the complex. Only weeks after they moved in, the family came home one night to find the kitchen window broken. Burglars had taken their television and the boys’ video gaming system, along with other trinkets.
Lee’s medical file noted that by September of 2015, Lee’s skin was “getting new thicker plaques with some ulcerations.” Old lesions were rising back up at the same time that new ones were growing. The worst was happening. Lee’s cancer had progressed into what his doctors referred to as “large cell transformation disease.”
There were some new treatments offered through clinical trials Lee could try, but “it definitely was not a good sign,” one of his doctors would later recount. “He was heading in the wrong direction.” Median survival for patients in that condition was one and a half years.
Lee’s vision of a long and bright future started to fade into something small and dim. He realized with a sad irony that his skin was so ravaged that the “Blessings” tattoo on his forearm seemed to be slowly disappearing. He would not be there to watch his boys grow up after all.
Lee was dying.
Carey Gillam has spent more than 25 years reporting on corporate America. Her first book, Whitewash: The Story of a Weed Killer, Cancer, and the Corruption of Science, won the 2018 Rachel Carson Book Award from the Society of Environmental Journalists, and was named an “Outstanding Book of the Year” by the 2018 Independent Publisher Book Awards. Gillam is currently Research Director for the non-profit consumer group U.S. Right to Know. Her new book is The Monsanto Papers: Deadly Secrets, Corporate Corruption, and One Man’s Search for Justice, published by Island Press.
Banner photo credit: jetsandzeppelins/flickr