By Jenny Neyman
A year ago, a bad hair day was something for Cheyenne Stettler to complain about. Today, even a no-hair day — having lost her long, lustrous blond locks to chemotherapy — isn’t worth getting worked up about.
“Being a teenager and what not, the only thing I was worried about, of course, was losing my hair. But after being in the hospital for the first time while I was getting chemo, that was not my concern at all. That was the last thing I cared about,” Stettler said.
Before being diagnosed with acute lymphoblastic leukemia and being medevacked to Seattle Children’s Hospital on June 24, just a few weeks after graduating from Soldotna High School, Stettler would have counted simple things, like hanging out with her friends and boyfriend, or going four-wheeling or camping, as reasons to be happy.
After the roller coaster of a summer she’s had — waking up from a coma, making progress toward walking unassisted and, most recently, the news that a donor match for a bone marrow transplant has been found — she’s got big, life-and-death reasons for excitement.
And yet, even though the magnitude of these improvements in her health would seem to dwarf her standard of happiness before cancer derailed her world, it’s only served to magnify what she found important before. Today, she’s appreciative of everything in her life — from the big things, like getting out of the hospital and the possibility of coming home and going back to school, to the little things, like phone calls from friends and even the prospect of having homework again.
“I’m hoping I’ll be back for the summer. I want to do everything I possibly can — camping, fishing, all things I haven’t been able to do. I miss Alaska. I just miss everything,” she said. “You don’t realize. There’s a lot of people in town that just want to get out of the small town, but when you have it taken away from you so fast, without any warning, it really makes you appreciate everything. I’m sick of being in a city. I never want to leave Soldotna ever again.”
For Stettler, the reality of cancer took awhile to set in. When she first started noticing health problems last spring, she didn’t think much of it. Her elbow hurt, but wasn’t much more than a nuisance. She was tired, but that was easily attributable to the hoopla of graduation, starting a new job as a dispatcher at AK Cab and diving into a summer full of camping and road trips before enrolling in Kenai Peninsula College in the fall.
“I just kind of ignored it. It was just kind of annoying-feeling. And I started a new job and got off work at midnight. I just figured I was really tired,” she said.
Her elbow became increasingly painful and inflamed, then froze altogether.
For a week tests were inconclusive; it wasn’t infected and she didn’t have an autoimmune disease. Finally, her doctor called and told Stettler and her mom, Whitney LaRose, to expect a call from Seattle Children’s Hospital, where her tests had been sent. The hospital called immediately, with a diagnosis of ALL so aggressive they thought perhaps the rapidly growing cancer cells had fractured her elbow, and wanted her on a jet that day.
ALL usually occurs in children under 10. Because Stettler was diagnosed at 18 and her case was fast-moving, that put her in a high-risk category necessitating quick action and aggressive treatment. Though her arm wasn’t broken, she was immediately started on several rounds of chemotherapy with several chemo drugs.
“It was very surreal. I was like, ‘I feel fine, other than my elbow.’ I just didn’t believe it was going on,” Stettler said.
Her grandfather died of pancreatic cancer, but her exposure to the medical details of that were limited, and she hadn’t had any other experiences with cancer before.
“It’s just all new to you. I knew nothing about cancer. When you hear ‘cancer,’ I just think, ‘cancer.’ I mean, I knew there were different kinds, but I didn’t know about children’s cancer or treatment or anything like that,” she said.
“At the very beginning it was like, ‘There’s no way this is true. This can’t happen to me, I just graduated high school, this cannot happen, I just got a brand-new job, this doesn’t happen to people like me.’ I wasn’t really scared at first. I think the people around me had realized it before I did. The time it finally sunk in was when I got to Children’s Hospital and had people coming in and explaining what kind I had, what it does, what kind of chemo I’d get, what the side effects are. So that made it kind of sink in.”
She’s gone through several stages since the initial shock wore off. There’s been fear and determination, sadness and silliness, hope and setbacks.
“I started to go through my angry phase, ‘Why is this happening to me? What did I do to deserve this?’” Stettler said. “I went through this sad phase where you cry forever, and then laugh at the same time for no reason.”
Her physical state was cycling through ups and downs along with her emotional state. The worst of it was when she lapsed into a coma for a month and a half.
“It was very different. I went into this coma in July and woke up and it was September,” Stettler said. “I woke up and I knew that I had cancer, I knew I was in a hospital. But I had to relearn how to talk. I had to whisper because I didn’t know how to use my vocal chords. I didn’t know anything — I couldn’t move my arms, I couldn’t move my legs, I had to regain all my strength back.”
The first thing she remembers regaining is laughter. Her sister, Kesla, and brother-in-law, Justin, were visiting Seattle when Stettler woke from the coma.
“My mom and Kesla and Justin were just kind of sitting in a corner and laughing. Justin said something that was funny — I don’t even remember what it was — and I started kind of laughing. And they were all, ‘Oh my gosh! She’s awake! She’s alive!’ Crying and calling doctors and nurses,” Stettler said.
Coming out of the coma marked an upswing in her condition and her perspective.
“I woke up and I was happy, I guess because I would have people I don’t even remember at all coming in saying, ‘I cannot believe the recovery you have made.’ I was just thinking it wasn’t that big of a deal, but it really was,” she said.
She became more aware of the other patients at the hospital, hearing about them and meeting some for herself. She struck up a friendship with a young man diagnosed with stage-four sarcoma.
“And he had tumors on his heart and lungs. He would talk to me and say, ‘Just think positive, you can do this. We can do this together. We’ll make it,’” she said. “He was actually given a time limit, they basically told him to just go home and enjoy your family and life. And he passed away. It made me realize that I’m so lucky to have something that’s curable. And it almost kind of made me feel selfish, because here I was being so angry about having cancer and having to go through all this, and here he was knowing he was going to die eventually and he was still so positive. So if this person can be that positive and have that bad news, I can do this.”
And she has. Recovery has been incremental, but she’s kept at it. Her first few weeks of physical therapy sessions after the coma were simply holding a ball of yarn in her hand.
“Just to see if I could hold it, because I had zero muscle, no strength at all. Once I could hold it I started standing and throwing the ball and doing coordination stuff,” she said.
One possible side effect of chemo is numbness in extremities. Stettler has had a bad case of myocytolysis in her feet, where the muscles become inflamed. Though she’s getting better, she isn’t yet able to get around on her own without a walker. Her mom is applying to get a service dog for her to help with mobility in the future.
“I’m hoping I will be able to walk and stuff so I can start school in fall,” Stettler said. “I miss just everything. Of course, my boyfriend and friends. And my dog that’s still up there. And just being in a small town. I would be happy just driving around seeing everything, looking at the trees and river. Anything. Walking around Fred Meyers, things I haven’t seen for so long.”
First, she needs to have a bone marrow transplant. She’ll be going to Primary Children’s Medical Center in Salt Lake City — because she’s covered under her dad’s insurance, based in Utah — later this month, for a spinal tap and testing in preparation for the transplant. She’s expecting to undergo radiation treatments twice a day for three days at Huntsman Cancer Institute, and then back to Primary Children’s for four days of chemo.
“That way my body’s completely wiped out — good cells and bad cells. So my immune system will be completely down because everything will be wiped out, but because of the new bone marrow it will be a clean slate,” she said.
“Hopefully everything will go smooth,” she said. “I’m definitely nervous about the radiation, just because I’ve never had it. I know chemo and spinal taps and bone marrow aspirates and ports and stuff like that, but I’ve never had radiation.”
If she develops signs of her body reacting negatively to the transplant, she’ll be sent back to Seattle for treatment. If all goes well with the transplant, she’ll spend 30 days in isolation in Salt Lake City, then another two months in Utah going in for checkups, before being cleared to come home.
She’ll have to go back to Seattle every few months for checkups, but hopes to enroll in KPC this fall and at least start working on her general education requirements. From there, she’s not sure what she will go into. Counseling or physical therapy are interesting, she said. Those are two things of which she’s learned the value.
Although, really, this experience has taught her the value of everything from her friends and family — “My mom has been amazing throughout this whole thing,” she said — to everyone back home who has supported her though prayers, well wishes, messages of encouragement, visits and fundraisers.
“I don’t even know how I could ever thank everyone, but I would try my hardest to thank everyone that has supported me and kept in touch, just try and pay it forward any way that I could,” Stettler said. “The whole community, the whole peninsula has done so much for me and has been so supportive. People I don’t even know, it’s just amazing.
“It teaches you a lot. So, honestly, I’m glad that this happened to me. I know that’s hard for some people to understand, but I don’t think anything else would have taught me what this has taught me. It just made me appreciate every single day, even if I was sick, I’m still so lucky to be able to have something that curable. It’s been hard and hurtful but it’s taught me so much about life. Just to appreciate everything. I’ll never complain about a bad hair day again, or stupid things like that, and just to be thankful for everything.”
Donations to an account set up for Stettler may be made to Wells Fargo account No. 7861882897. Anyone interesting in being tested to be a bone-marrow donor can visit http://www.marrow.org for information.