Join NBTS’s campaign to raise awareness about the importance of biomarker testing and clinical trials for patients with brain tumors.
READ MOREPublished on October 23, 2023 in Gray Nation Endurance, Patient
Little did Melanie F. know how much her life would change when a semi-truck t-boned her car after she left her office to grab lunch in August 2019. When the dust settled, her black car faced the opposite direction on a different road from where she had been driving. Melanie managed to get out of her totaled vehicle before she was taken to the emergency room for tests. Neurological scans related to the accident led to a brain tumor diagnosis.
In the following months, Melanie went to physical therapy three times a week. While her strength improved with time, her memory loss and difficulties with word finding did not. An appointment with a neurologist in November led to a CT scan showing some brain lesions. The neurologist believed they were caused by the impact to her head in the car accident and said they would heal with time. She scheduled an MRI for after the holidays as a follow-up. Unfortunately, the MRI revealed a brain tumor.
“I would have been fine without being hit by a semi-truck, but it allowed us to find the tumor,” Melanie shared. “If we hadn’t found it then, how big would it have been at this point?”
Melanie opted to have the tumor surgically removed.
Pathology from Melanie’s first surgery resection determined the tumor to be diffuse astrocytoma.
“I went back two weeks later to get the staples out,” Melanie said. “We were informed it was a diffuse astrocytoma. This type of tumor has ‘tentacles’ which can spread into neighboring cells. The surgery was a total gross resection. The surgeon removed everything he could see, and we were hopeful it would not come back.”
A year to the date, Melanie was informed there was a growth.
The first neuro-oncologist provided little guidance on the next steps, leading Melanie to seek out a different health care team.
“We went from no options to many options,” Melanie said. “It was a huge sigh of relief.”
Almost exactly three years later, Melanie returned to the operating room for her second awake craniotomy. This time, she had a better idea of what to expect. Melanie entertained her surgery team with tales of travel and television shows during the surgery.
Following surgery, Melanie’s health care team determined that proton therapy was the appropriate next step in her personal treatment plan for diffuse astrocytoma. Unfortunately, her insurance company initially did not approve the treatment.
“Our biggest hurdle was getting protons approved by insurance because it’s a more expensive treatment,” Melanie explained. “My insurance brought in a family practitioner without neuro-oncology experience and denied our first request. From there, both my neuro team and I began the appeal process. I called daily. I told them why I needed this treatment. The case eventually made its way to the appropriate team at the insurance company, and it was approved.”
Due to the nature of proton therapy, there needs to be no movement during treatment. Melanie wore a custom mask while strapped to a chair to help keep her immobilized during the procedure, which made her feel incredibly claustrophobic. The radiation therapy left her fatigued.
“My husband regularly reminded me, ‘fatigue is not weakness,’” Melanie said. “I needed to hear that so badly. Going from 110% in everything to being unable to do much, you start to feel bad about yourself. In the end, we need to give ourselves some grace and the ability to breathe. Self-care isn’t selfish.”
Another side effect of proton therapy was hair loss at the radiation site. For a young adult woman, losing one’s hair can be an emotionally and mentally challenging experience.
“I’ve always had a lot of really long hair,” Melanie shared. “The hair loss was hard. It just wouldn’t stop falling out. Making peace with the hair loss takes some time, but the sooner you can come to terms with it, the sooner you’re able to move forward. This is where shopping helps! My husband and mother both bought me a number of silk squares. They didn’t make the hair stop falling out, but it was easier on my hair without using hair ties. I also was instructed to limit washing my hair to one to two times a week.”
Melanie’s confidence to wear her hair up in public grew as she adjusted to her hair loss.
“A lot of people say to me, ‘That’s such an edgy haircut — what a badass haircut,’” Melanie said. “I joke, ‘You only need proton therapy to get it.’ I think it’s a testament to the skill of my neurosurgeon that you can barely see the scar. People just think it’s a haircut.”
Before starting treatment for diffuse astrocytoma, Melanie’s neuro-oncologist brought up family planning as a point of discussion.
“I’m really glad that he brought it up because that’s not something we would have discussed on our own,” Melanie said. “We’re still in our early 30s, but the further the conversations progressed surrounding treatment and how it could impact my body, the more the family planning conversation came up.”
Chemotherapy can have a significant impact on fertility. For individuals of childbearing age who may wish to have children in the future, it’s important to discuss fertility preservation options before starting chemotherapy. These options may include freezing sperm, eggs, or embryos, or other assisted reproductive technologies.
“They weren’t worried about my brain surgery or proton therapy impacting family planning,” Melanie explained. “Rather, they were worried about the chemo. The treatment I am undergoing makes you run through your eggs faster. I went back and forth, asking myself, ‘Do I want the choice taken away from me?’ In the end, going through IVF was like having an insurance policy.”
The cancer center at Northwestern University offers fertility preservation to oncology patients, significantly reducing IVF costs for Melanie and her husband Ron.
“We decided to start IVF before my second surgery,” Melanie said. “I tried to align it where retrieval would be two or three days before my brain surgery, syncing up recoveries. IVF was tough, but I’m thankful we did it.”
For three years, Melanie did not publicly share her diffuse astrocytoma diagnosis. It wasn’t until her sister, Erica W., joined the Gray Nation EnduranceTM team to run in the 2023 LA Half Marathon on behalf of the National Brain Tumor Society (NBTS) that she decided to tell her story.
“It felt like I was keeping a big secret,” Melanie explained. “I didn’t want any pity parties, which deterred me from putting it on social media. Once I began sharing my story, the outpouring of support has been, and still is, incredible.
By sharing her story publicly, Melanie helped her sister raise nearly $6,000 for NBTS at the LA Marathon — far surpassing their goal of $650.
“Our doctors talk about how they’re so close to finding a cure, but the only way that they’re going to find the cure is through research and funding, and that comes through awareness,” Melanie said.
“I couldn’t get to LA for her race, but she FaceTimed me as she crossed the finish line,” Melanie said. “It was really special.”
Erica continues to put meaning behind her miles, most recently training to run the 2023 Twin Cities 10 Mile as a Gray Nation Endurance team member. Melanie supported Erica’s fundraising efforts this time by teaching a yoga class in September for donations. Twenty people attended her class, raising over $700 for NBTS. Together, Melanie and Erica raised another $3,000, putting them at nearly $9,000 in fundraising for 2023.
“I’ve been teaching for over a decade,” Melanie said. “Yoga is an important part of my life. Getting into a state of flow, where you don’t have to think, and all you have to do is move and breathe — it’s powerful and healing. Donation classes have a heightened energy and awareness. It’s magnetic.”
When Melanie’s college roommate learned about her upcoming second surgery, she organized a meal train at the beginning of January that Melanie and Ron continue to benefit from.
“Friends would bring soup over on Monday and Wednesday and then pasta on Friday,” Melanie said. “It was so nice not having to think about meals with everything else going on.”
Sharing her story online has also led her to find community with other patients with brain tumors.
“I’ve connected with many people battling brain tumors and going through treatment.” Melanie said. “Being open, vulnerable, and authentic about this experience is a really powerful thing, and I think it gives people hope. You are not alone.”
Gray Nation Endurance is the official endurance program of the National Brain Tumor Society. Whether you run, ride, swim, hike, or paddle for NBTS, you can celebrate a survivor, pay tribute to a loved one, or make an overall difference with your miles. Join NBTS and individuals like Erica around the country by applying for a charity team or selecting a race or endurance activity of your choice.
TAGGED WITH: brain cancer, Gray Nation Endurance, diffuse astrocytoma, proton therapy