Jake Edwards, wife Bonnie, keep sunny outlook despite rare cancer
By Julie Gerke
Photos courtesy of Jake Edwards
For 24 years, Jake Edwards had a traditional life: He moved to Jacksonville from Greenfield and lived in the northeast Jacksonville house purchased by his grandparents. He graduated from Jacksonville High School (Class of 1993) and earned a truck driving certificate from Lincoln Land Community College.
Single, he was working at a local book bindery when he came down with pneumonia. He went to then-Passavant Hospital on May 17, 2000, for bloodwork and a chest x-ray.
It was the last regular day of his life.
Edwards, now 49 and married to Bonnie, is a general laborer for Prairieland FS and a blacksmith hobbyist. The couple attends Literberry Christian Church; his wife is president of the Jaycees (he is a former member) and Jake Edwards belongs to Harmony Lodge 3 AF&AM and Ansar Shrine, where he portrays Flyboy the Clown.
The years between the chest x-ray and today have been filled with surgeries, tests, chemotherapy and multiple write-ups in medical journals — five times just in the New England Journal of Medicine — and a badge of rarity:
Jake Edwards is one of two people living in the United States with a form of germ cell cancer. The disease comes in two forms, and his is the rarer of the two.
He said 11,000 people have been diagnosed with the seminoma type. He has nonseminoma teritoma, which has been diagnosed four times. Two of those patients died. Jake Edwards and a man in New Jersey are the only two survivors.
‘No idea what it is’
The chest x-ray in May 2000 provided a hint that something was very wrong. The film showed pneumonia in one lung, but something that looked like a shadow on his heart. Doctors estimated it was about the size of a golf ball.
Edwards has a family history of heart attacks, stroke and high blood pressure, but a cardiologist said he didn’t have a heart problem: Edwards had “something” inside his body and “we have no idea what it is.”
A scan the next day was even more worrisome: The “something” had grown overnight to the size of a softball and had encased his heart, a large artery and “pretty much flattened out” his left lung. Awaiting transfer to a Springfield hospital, Edwards’ fever rose as high as 105.9 as his body tried to fight infection in the right lung.
“Nobody had mentioned the word ‘cancer’ to me at all,” Edwards said, as he recounted his story. “I wasn’t married at the time. My mom was supposed to meet me [at the hospital]. They put me on an elevator and wheeled me past a sign saying ‘Regional Cancer Center, Memorial Medical Center.’ And I lost it. I swore up and down I was going to die, I was a dead man. They transferred me into my bed and I was crying. I thought cancer was a death sentence.”
A needle biopsy followed, and he was released to wait for pathology reports. A couple of days after that, he remembers talking to his grandpa about fishing when the phone rang.
His grandpa answered the call. “Jakester, it’s for you,” he said, using his grandson’s nickname.
And then he started to cry.
‘I’m not going to let you die’
Doctors can’t treat cancer until they know what type and form is involved, and Jake Edwards’ cancer was so rare — and not yet specifically diagnosed — so it was weeks before doctors could create a treatment plan.
He’d gotten sick again, this time from a viral infection, and had hit the 37-day mark when his doctors finally pinpointed the cancer.
“We got it,” Edwards remembers the doctor saying. “It’s a germ cell form. I’ll explain it later. One guy died from it but I’m not going to let you die from it. I’ve got to start ordering you chemo.”
A surgery and 40 rounds of chemo — six different kinds — followed during the next four months. Four of the drug therapies caused heart damage, and Edwards now lives with a variety of ailments connected to the poisons that saved his life.
After the last round of chemo, doctors declared him free of cancer, although he carried a large piece of scar tissue on his stomach. Doctors told him it was very common when a patient had a tumor that weighed between seven and 10 pounds.
Cancer-free, Edwards went back to living the life of a 25-year-old. He went back to work. He started having fun.
He and Bonnie were married in April 2003. The doctor met with them before the wedding: “He gave us this wonderful wedding gift with warning label: You’re released. It’s been three years. There’s no sign of any cancer coming back. Go; enjoy. Here’s your wedding gift. But … if comes back, no one has ever survived germ cell a second time.”
Ten years later, as a part-time farm worker and full-time aviation student at LLCC, Jake Edwards was mowing the yard when he suddenly got winded.
He’s allergic to a lot of what lives and floats in Illinois air, had gained weight, and thought he had allergy-induced pneumonia.
He saw a local doctor, who said Edwards either had just had a heart attack or was going to have one. Trips to Passavant and then Memorial came with tests. Yet, heart scans didn’t show any artery blockages.
Edwards knew what was coming.
On April 19, the couple’s 10-year wedding anniversary, scan results showed a recurrence of the cancer.
This tumor was large enough to dislodge Jake Edwards’ left diaphragm and cause his left lung to collapse. A scan showed the tumor was contained, so doctors removed the old scar tissue, pulled out the tumor and reset the diaphragm.
However, his doctor said, “this [tumor] doesn’t look like the last one. The first one looked like a bunch of grapes on a vine. This one looks like a piece of animal fat.”
Two weeks later, pathology results and blood work confirmed the germ cell cancer had returned.
‘You were misdiagnosed’
Springfield doctors sent Edwards to the Indiana University Simon Cancer Center in Indianapolis, a hub for germ cell cancer research and treatment. There, oncology specialists said the ribbon of scar tissue from the first surgery actually had contained cancer cells. “You were misdiagnosed,” a specialist told him. “They said you had seminoma. It’s actually nonseminoma teritoma, which is the other type. You’ve had cancer for 14 years and no one knew it.”
When Edwards asked about the cancer’s rarity, he was told he was just the third person to be diagnosed with it.
His wife, whose birthday was that weekend, jumped in quickly: “I always knew he was odd and science just proved it.”
Germ cell is a genetic form of cancer; doctors said Jake Edwards’ mom had been the primary carrier, and his dad also carried the gene. “I was born with this,” Edwards said. “It’s part of my DNA.”
Edwards’ parents and step-siblings do not have the cancer. His sister, who died as an infant, likely did, because both siblings would have carried the same mix of genes.
‘A huge ripple effect’
Months later, Jake Edwards again found it hard to breathe, and a scan in Springfield confirmed the cancer had returned for the third time, now as a tumor behind the bronchial tubes on the left side of his chest.
Another trip to Indy confirmed that tumor also was encapsulated and it, too, was removed in an operating room filled with doctors, nurses and techs, with the gallery filled with other doctors, medical and nursing students, residents and pathologists because, Edwards shared, “I am the show for the three-ring circus.”
He recovered from that procedure and on Dec. 18, 2013, was declared cancer free. The next day, he graduated from the LLCC aviation program with a B-plus average earned during cancer treatment and recent diagnoses of dyslexia and attention-deficit/hyperactivity disorder.
Later, he met one of his Springfield doctors for lunch. “You know how you throw a small rock in the lake and watch the waves spread out?” the doctor asked Edwards. “That’s what you’ve done for medicine in Central Illinois. What happened to you caused a huge ripple effect in every facet of medicine. We get better … because of you. Because you lived. We did the easy part. You had to do the hard part. You lived.”
‘You’re their rock’
The cancer likely will return, and Jake and Bonnie Edwards both know it. In the meantime, doctors have diagnosed long-term chemotherapy effects as the cause of Jake Edwards’ breathing problems and racing heart. He has three arterial blockages and his heart valve will need to be replaced. His diabetes and high blood pressure are affected, and he’s lost a lot of weight because of steroid-resistant insulin.
He took as many as 17 pills a day, and is down to four. “They don’t know what’s going to happen tomorrow,” Edwards said. “I’m the longest living human being that received this much chemo and these different kinds of chemo. I still have 51% of the chemo left in my body, because it attached to my DNA. It’s part of my cells.”
Individually and as a couple, Jake and Bonnie Edwards say they’ve learned the hard way that it’s necessary for patients and their families to be their own advocates. Both do their own research, insist on certain procedures, won’t tolerate being patronized and fire medical professionals if needed.
“As a caregiver, it’s extremely rough watching someone go through it but you’re their rock,” Bonnie Edwards said. “You love them regardless. There are good days and bad days. It’s all going to come out in the end.
“We have a little joke,” she said. “People ask us, ‘How do you guys smile and have such a positive outlook?’ And I say, ‘He hasn’t pushed my insane button yet, so God hasn’t pulled him home.’”
