Oh Well!

Skin Deep: One man’s hard-won battle with skin cancer, and his mission to prevent it in others.

Heather Anne Lee / Photography by Fred Lopez

I went on a five-day cruise and came home to a mole on his back that wasn’t there when I left.”

Jerry Johnston knew of the mole, of course. It had been there for years, so he thought nothing of it even when it started growing. However, his wife, Kim, knew better.

“I’d been going to a dermatologist my whole life. There were always spots that were nothing and ones that they could freeze off or cut out. But this wasn’t like that; it went from nothing to the size of a small pencil eraser in five days.”

Kim’s fear was not without reason. A call to the dermatologist on Monday, July 2, 2018, led to a biopsy on Tuesday. The diagnosis? Malignant melanoma. And just like that, life changed.

The American Cancer Society estimates more than 99,780 new melanomas will be diagnosed in 2022, and 7,650 people will die from melanoma before this year is over. Of the three skin cancers – basal cell, squamous cell, and melanoma – melanoma accounts for only 1%, but it causes the majority of deaths from skin cancer.

Its rates have been rising steadily the past 30 years, and it’s believed that 95% of melanomas are related to UV radiation. So Jerry’s diagnosis, while startling, wasn’t a surprise. Although it was to him.

Think melanoma is an older person's problem? Think again. Head and neck melanoma jumped 51% from 1995 to 2014 (the most recent years for which data are available), especially in non-Hispanic white men aged 15 to 39. According to "JAMA Dermatology," this demographic makes up a disproportionate number of melanoma-related deaths—more than 60%.

Photo courtesy of Jerry and Kim Johnston

“I think I spent the better part of my life not worrying about stuff like this because it always happens to the other guy, right?” Jerry says. “I never used sunblock. Ever. I have always loved the outdoors, and spent most of my life living and playing in the sun, sometimes with a shirt, sometimes without, sometimes a hat. I never thought about it. Sunburn? Throw on some aloe, and just kept going. I went through life like nothing could hurt me …”

Jerry’s voice trails off, his eyes well with emotion, and Kim grabs his hand. “But we’re the lucky ones,” she says.

It didn’t feel lucky at the time. Given the aggressive nature of growth, Jerry was referred to a surgical oncologist who removed the mole and a few lymph nodes on August 18. On September 14, the Johnston’s received news that Jerry’s mole, this “nothing,” was in fact Stage 3 cancer and had metastasized to his lymph nodes. On October 9, he began a one-year battle of immunotherapy on a newly approved drug called Opdivo.

“Opdivo saved his life. Before that drug, Stage 3 melanoma was almost always terminal.” Kim pauses. “Terminal! For a cancer that is almost entirely preventable. That’s why we’re so passionate about sharing our story. If we can save just one family, or one person, from hearing this diagnosis, it’s a blessing.”

A mixed blessing at that. Chock full of potholes and detours, the road to remission was arduous. First there was the year-long Opdivo therapy, a treatment that came packaged with fatigue, rashes, and the threat of liver failure. Then six blissful months believing they had conquered the Big C, only to learn on February 11, 2019, that it had roared back to life, this time metastasizing to his lungs. Another 18 months of treatment, more aggressive than the first and a host of new side effects.

Photo courtesy of Jerry and Kim Johnston

“The second time was scarier,” Jerry shares, head bowed and eyes glistening. “We thought we had beat it. But as you go through this, you become much more enlightened to what goes on in the cancer world. For some, you treat cancer and it’s gone. But for most of us, especially those with melanoma, you learn that it’s never really gone. It can come back … anywhere, anyplace, any time.”

And so the Johnstons remain diligent. They believe that Jerry is cancer free, a fact that his yearly PET scan continues to affirm, but the work is far from done.

“Now I wear sunscreen every single day,” says Jerry. “I wear long-sleeve SPF sun shirts and hats. I see my dermatologist twice a year, and go back any time we spot anything new.”

“And we tell everyone we meet: Wear sunscreen and get your yearly skin checks!” says Kim. “Friends, family, strangers, it doesn’t matter. At the ballpark with our kids, we’re the parents passing out sunscreen. Jerry’s on Facebook sharing his story all the time. If there’s a stranger in line at the grocery store with a noticeable mark, we talk to them, too! As long as we can help it, no one we know or meet needs to die from melanoma ever again.”

Early signs of skin cancer

Use the ABCDE checklist to remember what to look for during your monthly self-exam:

A is for asymmetry, i.e., one half of the mole looks diff erent from the other.

B stands for border: check the outline, are the edges uneven?

C represents color; the mole should be one color rather than two or more shades.

D is for diameter; the mole should be no bigger than 6 mm across.

E stands for evolution: has it changed in size, shape, or color?