Tucked within Keizer’s Palma Ceia subdivision, Pam and John Johnsons’ home doesn’t stick out. The beige colored split-level home, while cute, is just one of a dozen other similar looking homes on the block.
But hidden behind the suburban home is the Johnsons’ own private beach. Grass replaced by sand, bricks by conch shells and, while not the Pacific Ocean, there’s even a small plastic pool for their daughter’s dog.
“My husband and I at some of our worst times, when I had my two breasts cut off, when I found out I had leukemia, when I had Merkel cell carcinoma and didn’t know if I was gonna be around next month to see my grandchildren, where did we go? The beach. It’s my solitude. It’s my sanctuary,” said Pam Johnson, who has lived in Keizer for 68 years.
Johnson’s life with cancer, which has spanned over two decades, is outlined in her recent self-published memoir, My Travels with Big C . . . and a Clinical Trial that Changed My Life.
The book focuses on Johnson’s decision to participate in a risky six-month clinical trial for Chronic Lymphocytic Leukemia instead of choosing the standard treatment in hopes of increasing her chance of survival.
“As soon as I found out I had breast cancer or leukemia the first person I wanted to talk to was somebody who had the same thing I had. So I thought if I can get a book out there, maybe people can learn from my experience,” Johnson said. “Maybe they can find some hope, not be quite so scared because somebody else went through what they did.”
Johnson had her first health scare in 1997 when she was diagnosed with breast cancer and as a result, had a double mastectomy.
After her recovery, Johnson began teaching at South Salem High School and was cancer-free for over a decade. Then, on a Wednesday afternoon in July of 2009, Johnson went in for a regular blood test. The test revealed that her white blood cell value was over two times the maximum standard number. A doctor’s visit a few days later revealed that Johnson had Chronic Lymphocytic Leukemia.
“I kind of thought I’d paid my cancer dues when my beautiful breasts were cut off, then when my white blood cells turned on me, and then especially when a very rare and very aggressive skin cancer almost killed me. But there’s oftentimes no ending payment when it comes to cancer,” said Johnson.
Johnson was able to avoid treatment until April of 2014, when her white blood cell count was 15 times higher than normal, her spleen was double its normal size and tennis, her favorite activity she’d once played daily, became too dangerous.
Treatment had to start and an oncologist introduced her to the idea of participating in a clinical trial being done at Oregon Science and Health University.
“When I first started the trial I did it for selfish reasons. I wanted to live longer, and I didn’t want to leave my husband without a wife, my daughter without a mother, and my grandchildren without a grandma. Over time though, the trial took on even greater meaning. I realized traveling through an unproven treatment had the chance to help hundreds, thousands, and maybe even millions of people and writing about it might help to ease the fears of the unknown,” said Johnson.
It’s been close to 13 years since Johnson was first diagnosed with leukemia and eight since she first began the clinical trial. The trial was a success, and Johnson is now in her seventh year of remission.
With check-ups every six months, Johnson said she knows all too well that every time her blood is drawn she knows the results could show the cancer coming back.
“When a health crisis hits, you really start learning what’s most important in life and how you want to spend the time you’re given. I feel more alive after thinking I was going to die,” Johnson said.
Additional information about Johnson’s book can be found on her website pcpillette-johnson.com. The book can be ordered directly on her website or at the following local book shops: Reader’s Guide in West Salem, Escape Fiction in South Salem, Second Chance Books in Independence, and Books N Time in Silverton.