There are just some things worth fighting for.
Tammy Tackett was willing to fight the disease that struck like a bolt of lightening from the middle of nowhere last year, willing to do whatever it took to minimize the chances that it would return and spread, wreaking havoc on her world and everyone in it.
And then, in the midst of the fight of her life, it turned out there was one more thing she was willing to push for: her hair.
What she found was a relatively new treatment that now could help scores of other Charleston-area patients using something most of us encounter every day: ice.
“Last year in March, I was diagnosed with stage 1 invasive ductal carcinoma, which is stage 1 breast cancer,” she said.
It was devastating, except there wasn’t much time to dwell on that. One of the first things she did was have a genetic test.
“Really what they do is test for the BRCA1 or 2 gene, which is what they consider the Angelina Jolie gene,” she said.
What doctors found instead was a genetic mutation that indicates a sharp increase in a patient’s risk for breast cancer.
“It kind of pushed our decision for me to have the surgery,” she said.
Her double mastectomy was performed at the MD Anderson Cancer Center in Houston in April 2018.
The next big decision was whether — after the surgery — she really had to go through chemotherapy.
“They send off the tumor and it comes back with a grade, and I got a score of 19; which, anything 18 and below, they didn’t think chemo would benefit you, and anything 20 or above, you definitely have to have it. So I was in a gray area,” she said.
Tammy and her husband, Ken Tackett, read through volumes of research and decided to be aggressive: She would start chemo at the Charleston Area Medical Center’s Cancer Center in May 2018.
“I was like, ‘Whatever I need to do,’” she said.
Then, reading up on the expected hair loss, she came across some information about cold caps, a relatively new procedure designed to limit or prevent the loss of hair. The first device was approved by the Food and Drug Administration in December 2015.
“The purpose of the cold cap therapy is extremely cold temperatures that constrict the blood vessels, and what that does is, it’s preventing chemo from entering the blood-brain barrier,” said Sara Towle, a breast cancer nurse navigator at CAMC. “We’re preserving the hair follicles with the intention of preserving the patient’s hair.”
“It’s a cap that you put on your head, and it kind of freezes your hair follicles so that no medication gets around that area,” Tammy said.
It’s expensive, time-consuming, tedious and not covered by insurance — though there is an income-based program called Hair to Stay that offers financial support to low-income cancer patients.
Still, the caps don’t come with a guarantee.
“It might work for some people and not others, for some medications and not others, so it was just something that I wanted to try,” Tammy said.
Freezing cancer out
“We could’ve been twins,” said Ken, grinning and running a hand over his bristled scalp.
And the thing is, he would’ve been just fine with that. He could care less about hair, his own or anyone else’s. Even his wife’s.
“The most important thing to me was the health,” he said.
Tammy has long, dark locks, beautiful hair that frames her face.
It’s just hair.
But it’s so much more.
For many cancer patients, losing their hair is “a huge self identity loss, I almost would say crisis,” Towle said.
“They’re already dealing with the fact that they’ve lost part of their breast, whether it’s a portion of it, all of it or both of them. So it’s a self identity crisis. They’re like, ‘I’ve already lost something that defines me as a woman, don’t take my hair, too.’ It means everything to them.”
For Tammy, in the midst of aggressive cancer treatments, her hair represented a shot at normalcy. Normalcy for herself, and for the couple’s two children, Hannah, 16, and Zachary, 14.
“I wanted to feel, you know, to look normal for them. ... I showed them the caps and I asked their opinions and what they thought, and they’re both like, ‘I think you should try it,’” she said.
“I knew that was a psychological aspect to her, going through everything,” Ken said.
So the guy who couldn’t have cared less about hair teamed up with one of Tammy’s best friends, Kelly Maxwell, and together they took on the task of saving Tammy’s locks.
“She’s like, ‘I don’t want you to have to worry about anything.’ And so she pretty much took over the whole process,” Tammy said.
Other friends and family members brought meals, helped with transportation and lent a hand in a long list of other ways.
“You have to have a team,” Tammy said, “and we were so lucky to have so many people.”
Ken, she said, was there every step of the way. But when it came to the cold caps, “I wasn’t going to mess up,” he said.
It was quite a task.
Tammy found Penguin Cold Caps, a company that rents the caps that would wrap around her head during chemo treatments. Maxwell went through unwrapping them and researching the process.
The caps had to be frozen the night before, then kept on dry ice at sub-freezing temperatures. One by one, each cap had to be wrapped around Tammy’s scalp for 20 minutes at a time, then switched out for a new cap and placed back on ice to lower the temperature for another rotation.
And that had to continue — every 20 minutes — for eight hours straight. An hour before the treatments began. Three hours during the treatments. Then four hours afterward.
The hardest part was regulating the temperature, Maxwell said.
“The caps had to be 22 degrees below zero when you put them on her head. And when we were using the dry ice, we were getting to, like, 40 below,” she said.
This meant Ken had to knead them to warm them up.
Before the first chemo treatment began, the three of them held practice runs.
“We were so diligent, our timing, our measurements, everything,” Ken said.
“It was like, at 19 minutes we knew to start the process of taking it off, and we had it down to two minutes of taking if off and putting it on.”
“After I was done having chemo,” Tammy said, “we packed — well, they packed — the cooler with dry ice.”
They would put on a new cap, put the other three in the cooler and race out the door.
“We would jump in the car, come straight home and then change it again,” she said.
“It was like 90 degrees outside, we’d have the air conditioner on in the car, drive straight home,” and keep the process going for another four hours, Ken said.
And it went on every three weeks for three months.
“I was the one who was torturing here, so really, I had the easy part,” said Kelly, laughing but admitting it wasn’t a comfortable process for any of them.
It was difficult. It was frustrating and tedious.
But in the end, it worked.
Paying it forward
It worked so well that Tammy found out about two women, former cancer patients themselves, who have the nonprofit Rapunzel Project. The firm donates biomedical freezers for storing the cold caps during rotations. Kelly reached out to them and arranged for a freezer to be donated to the CAMC Cancer Center, possibly the only one in the state of West Virginia.
“They were amazing,” said Maxwell, a nurse practitioner by trade.
“We were probably four weeks out before her first treatment, and they rushed it for us so we were able to use it at least by her second treatment.”
With roughly 250 new breast cancer patients each year, Towle said, 100 to 200 a year might benefit from the cold cap procedure, though so far only a handful have used the freezer.
“If we could just get the insurance companies to help pay, but they say it’s not medically necessary to have your hair,” Maxwell said.
“But as a nurse and being a woman, I think it is medically necessary. The mental status of a cancer patient is extremely important.”
Tammy is almost a year beyond treatment. The few tufts of hair at the base of her scalp, where she missed treatments, are a few inches long now, and well-hidden by the long, silky locks she managed to save.
The important thing, of course, is that she’s here and healthy.
But having her hair intact gives her one more reason to smile.