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She didn't want to lose her hair because she didn't want to look sick
HOWLAND
111“I don’t mean to be vain, but I just didn’t want to look in the mirror and see myself bald,” said the 66-year-old retired Howland schools language-arts teacher.
She went so far as to get a second opinion to the Cleveland Clinic’s treatment diagnosis. Roswell Park Cancer Institute in Buffalo agreed that chemo was the best treatment option.
Resigned to chemo, Karen and her husband, retired attorney Jim Gray, “did some research” on the Internet and came across something called a “cold cap” that is subject of several clinical trials, including one by the Cleveland Clinic, to determine if it is a reliable way to mitigate or avoid head hair loss caused by chemo.
The Grays decided to try the cold cap, and for Karen, it worked perfectly.
The cold cap, or scalp-cooling device, has not been approved by the U.S. Food and Drug Administration. Nonetheless, Jim contacted a Texas company that makes cold caps.
“I discussed it [cold cap] with my doctor [Dr. Robert DeBernardo, an obstetrics and gynecology oncology specialist at the Cleveland Clinic] and I thought, what do I have to lose ... just my hair,” Karen said, happily running her fingers through the hair she didn’t lose to chemo.
She won all around.
After three months of chemo, the nodules in Karen’s lung, too small to remove surgically, had shrunk.
“Chemo doesn’t get rid of the nodules ... it just keeps them from dividing and spreading,” she said.
And she kept her hair.
Here is how the cold cap works.
According to the website Breastcancer.org, cold caps — tightly fitting, strap-on hats filled with gel that’s chilled to between minus 15 and minus 40 degrees — may help some women keep some or quite a bit of their hair during chemotherapy.
Because the caps are so cold, they narrow the blood vessels beneath the skin of the scalp, reducing the amount of chemotherapy medicine that reaches the hair follicles. With less chemotherapy medicine in the follicles, the hair may be less likely to fall out, according to Breastcancer.org.
In most cases, patients rent the caps for the length of their chemotherapy treatment. The caps are chilled in a special freezer — home freezers can’t get the cap as cold as it needs to be — and then delivered to the chemotherapy treatment center, each in its own storage box.
The Grays used dry ice, purchased at Dom’s Ice Palace in Youngstown, to cool her rented cold caps to the proper temperature, which Jim then lugged to the Cleveland Clinic in a large cooler for her treatments.
Several cold caps are needed for each chemotherapy infusion because the cold cap is worn 20 to 50 minutes before and after chemotherapy and has to be changed several times as it begins to warm. Karen needed six caps for each session.
Because the caps are so cold, some women get a headache while wearing the cap, and most get very cold and cover themselves with blankets during chemo.
Karen, a 1966 graduate of Champion High School who received a bachelor of science degree from Youngstown State University, taught 39 years in Howland schools and before that for a short time in Mathews schools, retiring in 2010.
Her husband, who described himself as the “cooler lugger and cold-cap changer,” was shot by a sniper in 1968 while serving as a Marine Corps forward observer in Vietnam. He graduated from Kent State University and received his law degree from Ohio Northern University.
Karen acknowledged the cold cap is not fun.
Putting on the cold cap is like getting a brain freeze, like one gets from eating or drinking something cold, but on steroids, she said.
“If someone really doesn’t want to lose their hair, I recommend it 100 percent. But it is uncomfortable enough and costly enough that they may not want to do it,” she said.
Diagnosed in 2007 with uterine cancer, she had surgery and radiation but no chemotherapy and was clear of cancer until it reappeared in her lung and was removed surgically in 2011.
Still no chemo for Karen.
But, a few months ago, nodules too small to biopsy or remove surgically appeared in her other lung. That’s when chemo was recommended as the only viable option to doing nothing.
“I think your appearance is important to your well-being. I have always been proud of Karen’s hair and of her. I think the cold cap was wonderful because I know she didn’t want to lose her hair,” Jim said.
Karen said she has never been sick because of her cancer except when recovering from surgery.
“I just don’t want to be remembered as being sick. I don’t want to look sick. No one knew that I was going through chemo. They couldn’t believe it when they found out — and that’s what I wanted,” she said.