Friends from around the world joined a room full of women via FaceTime to watch a hairdresser cut Lynn O.’s bright red locks, which were to be donated. Her friends were shocked to see Lynn, known for her long red hair, choose to shave her head.
For Lynn, her decision was born out of necessity due to treatment. After a month of experiencing never-ending headaches, scans uncovered a brain tumor in Dec. 2017, which was later determined to be glioblastoma (GBM). She underwent surgery, radiation, and chemo. Her neuro-oncologist then prescribed Optune, a medical device that is applied with electrodes placed on a patient’s scalp and delivers alternating electric fields to disrupt tumor growth.
“I thought my hair was my identity, but I learned it wasn’t a big issue when I shaved my head,” Lynn said. “I tell other women who have to shave their hair that they’re still the same person. Your personality comes through. I tell women, you just put on some funky earrings, a little bit of makeup, a nice head scarf, and you’re good to go.”
Mentoring Patients and Care Partners
Five years later, Lynn continues to wear Optune, also known as Tumor Treating Fields. Lynn and her husband Larry serve as mentors through a buddy program to share their tips and tricks with individuals who have just started using the device.
“We carry the laptop around and show them how to live with the device during a Zoom session,” Larry said. “This is how you should shower. This is how you should sleep. These are the different headcover options, and here is the backpack that she wears. We’ve even shown someone exactly how putting a T-shirt on works.”
Other tips that they frequently share include:
Wearing Tumor Treating Fields requires shaving your head on a regular basis, so the couple tried different shavers to see which would work best for them. They ultimately landed on the Pitbull electric shaver. “We have this killer shaver that the football players use,” Larry said. “It’s really good at getting rid of the hair.”
Larry discovered a way to prepare the arrays with gauze over the metal and plastic parts so that it doesn’t irritate Lynn’s scalp. If he can make it more comfortable for Lynn, it’s easier for her to wear it longer. “You’re supposed to wear it 75% of the time, but I wear it over 90% of the time,” Lynn said. “People are looking for times to take it off. I don’t do that. Because when it’s off, it’s not doing any good.”
It’s important that patients and caregivers advocate for themselves. Lynn shares an example, “The airports will say, ‘Let me take your bag and put it on the conveyor belt so that you can go through.’ I said, ‘No, I have to go with it because I’m attached. I have brain cancer.’ We do play that card when we have to.”
Lynn and Larry suggest finding creative ways to change the Tumor Treating Fields arrays. After suffering a rotator cuff injury, Larry worked with his physical therapists to find accommodations for changing her arrays while he rehabbed back to full strength for a year. “Lynn would either sit on a low stool, and I would change it, or Lynn would sit on a chair, and I’d stand on a stool over her head,” Larry said. “We worked it out so I would be standing with my arm completely straight down, and I could do her head without moving my arm.”
Prioritizing Self-care Activities
Larry and Lynn schedule her array changes around the activities that she does. For example, Lynn began Israeli dancing in 1989 and continues to dance alongside the same individuals she started dancing with more than 30 years ago. Dancing with five pounds in a backpack is challenging, so they change arrays on the days she dances.
“Dancing for me is meditation because I can forget everything,” Lynn explained. “I just dance and have a good time.”
In addition to dance, Lynn works with a personal trainer each week and prioritizes other self-care activities. Before her diagnosis, Lynn worked in the newspaper business on the financial side for 30 years. Since the pandemic began, she has joined a weekly memoir-writing group to record her life experiences that she will ultimately share with her two kids.
“There’s so much importance in Lynn attending the workshop besides the fact that she feels amazing,” Larry shared. “She could tell her story, which is really important, and I get to escape for three hours.”
Participating in Race for Hope Philadelphia
The couple first learned about Race for Hope Philadelphia in April 2018, five months after her GBM diagnosis. They formed Team Bald Bubby in August once they determined she could participate in the 5K walk.
“In Judaism, bubby is a term of endearment for grandma,” Lynn explained. “I’m bubby to my four grandkids. We just threw out a bunch of team names, and someone said, ‘Bubby is bald. What about Team Bald Bubby?’”
In six weeks, their team of more than 50 friends and family members raised over $20,000 for the National Brain Tumor Society.
“We went for packet pickup to get our shirts and all that stuff, and everyone was congratulating me on being a survivor,” Lynn said of that first year. “I couldn’t believe how many other survivors for years were there volunteering. I told Larry we should get involved in this, and we asked to be on the committee.”
As committee members, Larry and Lynn help plan the event and support others’ fundraising efforts. Since 2018, the pair have collectively raised $150,000. They find that fundraising through Facebook and emails has garnered the most donations.
“In our fundraising center on the Race for Hope website, we had a list of 270 people who made a gift in 2018 when Lynn was first diagnosed,” Larry explained. “We saw that there were 144 people who haven’t donated since 2018 at the beginning. We sent out an email today to that list to try to get their interest after six years, and we raised $1,000 in two hours.”
Larry and Lynn aren’t afraid to ask for donations, even reaching out to their former high school classmates and other long-time contacts. As big believers in the power of networking, the two make sure to donate to their contact’s own fundraisers, knowing that those individuals will likely contribute to their Race for Hope efforts in return.
“You never know how many people in your life you have touched until they start touching you back,” Lynn said.
Double Your Impact
More than 94,000 Americans will be diagnosed with a brain tumor in 2024. Your support today will help us fuel the breakthroughs of tomorrow and ensure NBTS can be there with resources and support for members of the brain tumor community, now and in the future.
Throughout November, your gift will be MATCHED up to $50,000, thanks to generous donors Stephen and Ellen Conley and Jim and Peggy Conley, in honor of Stephen’s 20th year of survival after brain tumor surgery.