Alexandra Wolf colored her hair for the first time on her 12th birthday.
She had big, curly blond hair, but she had always wanted to change it. She envisioned herself with straight, jet-black tresses. At the very least, she wanted something different.
So on her birthday, she begged her mom to let her use her grandmother’s leftover hair color. When she finally got permission, she applied the product and set to straightening her hair as best as she could.
Soon, she had used the color to transform her thick locks into a fluffy mane. A fluffy red mane.
“Nobody wanted to do it for me,” she said, “so one day I decided to do it myself. And then I was like, ‘Hey, I like doing this.’”
It was the start of a passion that would become Wolf’s career and her craft, a way for her to connect with others as she earned her reputation as a colorist and stylist at salons in Tucson and later in Flagstaff.
And when she was diagnosed with cancer at 33, it became a deeply personal way for her to help others experiencing challenges similar to the ones she had.
Wolf battled a rare sarcoma that led to the amputation of her left foot and part of her lower leg, along with multiple painful chemotherapy treatments. But then, by chance, she found the Arizona Cancer Support Community chapter in Flagstaff, and she saw the perfect opportunity to help others.
She started volunteering at the support community’s “Joy Room,” where cancer patients can pick out wigs. In her spare time, she styled wigs and helped women pick out their new look, offering support and encouragement along the way.
“It’s just the sweetest thing to watch (someone) come in scared and bald and worried, and then leave just happy and flipping their hair,” Wolf said. “And that’s why I do my job, to watch that transformation.”
Wolf wants to advocate for her community within and outside of her role as a volunteer. Whether for other cancer patients, other amputees, family members and friends or the general public, she sees the value in “being honest and open and saying, ‘Hey, I know you don’t know what to say, but I’m OK, and I’m OK to talk about it.’”
“I just have to use my voice,” she added. “The gift of cancer is that a near-death experience makes you so strong in who you are.”
Becoming a hairstylist, and an artist
Wolf graduated from high school at 17 and moved to Troy, Kansas, a small town just west of Missouri. Her boyfriend at the time encouraged her to enroll in a private beauty school in Missouri, and though she was overwhelmed and nervous, she took the leap.
“I was so scared (to start beauty school). But it was the best thing that ever happened,” she said. “That lesson has carried on for all the things in my life. The scariest things are usually the best things.”
Wolf built her arsenal of hairdressing skills, and she says her classmates and teachers started taking notice. A few of her classmates asked her to do their hair, she said. But what Wolf really wanted to pursue was fashion colors, vibrant locks that were seen as more daring in 2006 than they are now.
“You’ve got the rainbows and the brights, the vivid (colors), all the fun things,” Wolf said. “That’s art. That’s when I get to create and make art.”
She said that some people discouraged her from pursuing that kind of styling because they didn’t see it as a viable career.
“When I started doing those things, people would be like, ‘Well, that’s cute, but you can’t make money doing that,’” she said.
But she did it anyway. She entered contests, worked out special deals for clients and enlisted the help of her mom, brother and other family members so she could continue to experiment and refine her technique. She landed her first job at an upscale Aveda concept salon in Tucson, where her boss noticed her talent and started giving her more clients.
Wolf recalled hairstyles of changing light and dark coppers, of purple splashed through blond, of rings of color curled into a big afro.
“It was just weird avant garde stuff, and it just felt so fun to create that and see a professional picture and think, ‘I created that,’” she said. “It made me cry in the moment, being like, ‘Wow, I can really do this.’”
She later moved to Flagstaff, where she met her husband, Jacob, and continued her career while raising her two children, Dexter and Acelyn. As she progressed in her career, she also focused on the communicative and intuitive parts of the job, trying to get to know clients quickly to help them find a style that best suited them.
“When people always say, ‘What do you think will look best on me? What would be the best style?’ my answer is the same for every person. Confidence. Confidence looks best on you,” Wolf said. “I’m not trying to be trendy and stylish and this and that. I just want you to feel good in your skin and see the beauty that I see in you.”
The diagnosis
In 2016, while working at the Aveda salon in Flagstaff, Wolf started feeling pain in her lower left leg.
“For three years, nobody could figure it out and everyone would say, ‘Well, you’re a hairdresser. Well, you stand on your feet all day. Well, of course, you wear heels, your legs hurt,’” she said.
The doctors she saw suggested blood clots, pinched nerves and fibromyalgia, but nothing showed up on ultrasounds. And the pain didn’t go away.
“I couldn’t understand why (only) one leg would hurt,” she said. “And so finally I went and begged and cried and pleaded for an MRI of my leg.”
Wolf was back in the hair salon an hour after the procedure when she got a call asking her to come back for another scan, this time with contrast, which involves injection of a special dye that can offer more detail in the imaging.
She finished her client’s appointment and returned right away.
“I remember them calling me the next morning and saying, ‘We don’t know what it is yet,'” she said, ‘”but it is cancer.’”
What Wolf had was a Stage 3b pleomorphic leiomyosarcoma. But that’s not what the doctors told her. She was diagnosed with a rhabdomyosarcoma, or RMS. Misdiagnoses are common with sarcomas because they are extremely rare, accounting for fewer than 1% of cancer diagnoses in adults, according to the National Foundation for Cancer Research.
Wolf completed a type of chemotherapy for RMS, but when that didn’t work, doctors decided to amputate her lower left leg.
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When they discovered the misdiagnosis, they told her she would need to complete another round of chemotherapy for her specific type of cancer, despite the amputation. That type of chemo included Doxorubicin, which is sometimes called the “red devil” because of its red hue and potency.
She knew the treatment would be painful, but she also knew she had to go through with it.
“I have two kids, so my only choice was my children,” she said.
She colored her hair a “long beautiful rainbow,” knowing it would only be a couple of weeks before it started to fall out. On July 30, 2019, Wolf brought a portrait of her great aunt — who was also a hairdresser, and who had died of breast cancer on Wolf’s 10th birthday — to the Wildflower Salon in Flagstaff, where her kids helped shave her head.
The chemo made her feel too warm to wear wigs, but she did her best to embrace the new look.
“I just had to rock being bald,” she said.
In February 2020, the doctors declared Wolf cancer-free. That was just before the start of the COVID-19 pandemic, but Wolf said that through all of it, she has remained grateful for what she has.
“I just try even when I don’t want to. I don’t want to go do this chemo and I don’t want to go get sick and I don’t want to go through these surgeries. But I have to for myself and for my kids, for my husband,” she said. “I’m grateful I’m alive. I’m grateful I can still stand.”
Community and advocacy
Because of her misdiagnoses and her challenges navigating the medical system, Wolf wanted to find ways to give back related to her experience. She got involved with a prosthetics organization and started an amputee support group.
One day, she was in the car with her husband when she noticed a sign for a new cancer support community. She told him to pull over and got out to ask about the group.
“They told me they were opening that cancer support center,” she said, “and I said, ‘I want to be involved. I am just cancer free. I wish this place were here when I was going through it, but now I can help.'”
Then she got an email that they were looking for someone to help with wigs. “That just seemed like the most perfect place for me.”
Wolf said she was nervous that volunteering with cancer patients might cause difficult emotions to come back up, but she decided to give it a shot.
She ended up loving it.
“I was scared, but it was beautiful,” she said. The first woman she helped picked out a “short and sassy” brown wig with highlights in it. “Since I’m so comfortable in the hair world, I think my brain went into that and I just wanted to help this woman find what made her feel good in her skin.”
Wolf said coloring and styling wigs is different from the typical hairdressing experience, and not just because of the technical expertise required. She sees her volunteer hours as emotional appointments as much as aesthetic appointments, a chance to listen and be there for others.
“A lot of times people just don’t have an outlet or someone to talk to. Unfortunately, a lot of people in there, they’re going through cancer alone or just with not a lot of community … And so I just want to give people a space where they can just like, you know, share, cry, do whatever they need to do,” she said. “I’m so happy that people trust me, that they can be that vulnerable with me. That feels so extremely special to me, that I can be that person for them.”
Moving forward with a new challenge
This summer, Wolf found out her cancer is back. This time it’s Stage 4, in her lungs and bones.
She recently started chemotherapy again, and she’s already noticing some of her hair — currently in a cropped blond pixie cut — beginning to fall out, albeit more slowly than last time.
She knows the fatigue might make it harder for her to contribute volunteer hours now. It’s a difficult step, she said, since she much prefers giving help to admitting that she needs it. But she expressed appreciation for the outpouring of cooked meals, fundraising and moral support she’s received from her family and community.
And she knows more this time around. She said she’s learned to advocate for herself and to read medical literature and resources online. She’s already been through the process of applying for grants to get additional prosthetics. Organizations like the Challenged Athletes Foundation, for instance, allowed her and others to get expensive blades and attachments that can be used for running and hiking.
Now, she hopes to spread that knowledge as she once again enters treatment. She’s been updating an Instagram page, @nextstepxalexandra, to document her experiences.
And she hopes that more science and research will be devoted to sarcomas like hers, so that future advances make a difference in the community she’s helped build and continues to rely on.
“The chemo that I’m taking was invented in my lifetime,” she said. “If I’d had this as a child, there would have been no chemo for me. And even since I’ve done this chemo three years ago, the chemo that I’m taking now is the same. But it’s given to me in a different way. So it doesn’t hurt me so badly. And that’s new. It’s changing rapidly right now because people are becoming more aware and there’s more funding.”
As for the “Joy Room,” it’s still available for those who need it, and Wolf hopes to return when she feels better.
“It’s never really about the wig,” she said. “It’s about us sharing stories and talking.”
Independent coverage of bioscience in Arizona is supported by a grant from the Flinn Foundation.
Melina Walling is a bioscience reporter who covers COVID-19, health, technology, agriculture and the environment. You can contact her via email at mwalling@gannett.com or on Twitter @MelinaWalling.
