The First One: 2012
“It happened really, really quickly,” says Sharon Mottola of when she was first diagnosed with a meningioma brain tumor in 2012.
Sharon, a registered nurse working at a North Carolina healthcare facility, had been experiencing chronic déjà vu for some time and decided to use her proximity to her primary care doctor to just quickly slip into his office and make sure everything was okay. Her exam raised no red flags, but her physician offered to send her for a CT scan if it would help ease her fears. She agreed and made the short trek downstairs to her office’s radiology department. Less than an hour later, it was now her doctor that was paying her a visit. He shut the door and asked her where her husband was. Still not realizing what was happening, Sharon made a joke. But what came out of her doctor’s mouth next was anything but a laughing matter.
The CT scan had revealed a large mass on her right temporal lobe. The swelling it was causing was significant enough that her doctor had preemptively readied an anti-seizure medication for her at the facility’s in-house pharmacy, made an appointment for a confirmatory MRI for the next morning, followed immediately by a consultation with a neurosurgeon. The 24-hour whirlwind ended with a terrifying proposition: Sharon was scheduled for brain surgery in just a week’s time.
“I didn’t have a whole lot of time to prepare at all,” says Sharon. “I wrote out a living will and I had family fly down from New Jersey. Thankfully, my sister-in-law came down to help with my husband and with our dogs and simple things like helping me wash my hair that first time [after surgery].”
The support of her family helped her through the early days of her recovery, post-neurosurgery. And after the initial period of adjustment, rest, and some physical restrictions, Sharon’s recovery thankfully progressed rapidly and with little encumbrance. Less than three months later she was back working full-time.
In fact, because the tumor was thought to be slow-growing – her neurosurgeon estimated that it had probably been growing for decades – he ordered follow-up MRIs every five years, a longer interval than many patients are prescribed.
The Second One: 2018
Having returned to a normal routine, with the confidence engendered by the liberal follow-up requirement, and experiencing no symptoms similar to what precipitated her first diagnosis, Sharon went for her first five-year follow-up MRI last year “without a care in the world.” She walked out with the diagnosis of another meningioma tumor, this time in her cavernous sinus.
This time radiation was required. Sharon scheduled these sessions for her lunch breaks, which allowed her to work from home in the afternoons and helped her manage the fatigue she sometimes experienced as a result of the radiation. Though the treatment shrunk the tumor, not all of it was destroyed and Sharon still lives with a piece of her tumor inside her head. She now gets MRI follow-ups every six months.
“Living with a brain tumor, you have to have friends that are patient for when you forget things, because it’s not always your fault,” Sharon reflects. “When I was going through the radiation, I definitely did notice some behavioral changes that my husband had to be aware of and call my attention to, because I didn’t really know.”
During her recovery from the first diagnosis, Sharon had come across the National Brain Tumor Society and signed up for the organization’s email alerts. Shortly before the one-year anniversary of her diagnosis, Sharon received an email announcing an introductory meeting for NBTS’ inaugural Charlotte Brain Tumor Race. Sharon eagerly planned to attend with her husband so she could learn how to raise funds for brain tumor research.
“I remember that meeting specifically…people were getting up and speaking and there were widows and widowers that were speaking,” says Sharon. “There were patients that were currently undergoing chemotherapy and radiation. And there were family members of deceased patients. And I remember sitting in that meeting and breaking down. I had such survivor’s guilt that day, but I knew I was in the right place.”
Sharon created a team, Mo-Over Brain Tumors, joined the volunteering planning committee for the event, and has been a fixture at the Charlotte Brain Tumor Race ever since – even serving as its chair for a year, before happily returning to her “worker bee” role.
“The friendships that I’ve made with those on the committee – past and present – are just invaluable…and then just being a part of the community and seeing everyone in the brain tumor coming together as a whole,” says Sharon. “Each year we have more and more participants; it’s just an overwhelming feeling.”
Her team has grown to 20-25 people over the years, enthusiastically raising fund to support the National Brain Tumor Society’s overall mission delivery programs in research and public policy advocacy.
But this past March, for the 2019 Charlotte Brain Tumor Race, Sharon’s fundraising took on extra special meaning with the introduction of the NBTS-Brain Science Foundation Meningioma Research Fund. Sharon quickly took advantage of this new opportunity to dedicate her team’s gifts specifically to the tumor type that had now twice invaded her life, becoming the first event team across all NBTS signature Walks, Races, Rides, and Plunges to specifically support the new Meningioma Research Fund (MRF).
“I’m just very thankful that I found the NBTS, and I’m especially grateful that now there is a Meningioma Research Fund that the charitable donations can be directed toward,” says Sharon. “I’m hopeful that someday all of our efforts do end up with a cure and that maybe there is a way to prevent these from popping up as they do so often.”
The Meningioma Research Fund
The MRF allows donors and fundraisers interested in supporting research specifically on this tumor type to join together to scale up the impact of their philanthropy. Funds raised from the meningioma community will be used to issue grants for best-in-class research aimed at identifying and advancing treatments that will dramatically improve survival and quality of life for patients. The MRF is the second program launched from NBTS’ Community Research Fund model, following the Oligodendroglioma Research Fund launched in 2013.
“I thought it was amazing!” says Sharon. “The fact that I could go ahead and allocate my team’s fundraising to what I suffer with, and am suffering with, to me was just very special to know that I could allocate the funds specifically for my cause…and I was just super thankful that this fund was created and we could do that.”
Meningioma is the most common primary brain tumor, accounting for 37 percent of all brain tumor diagnoses and approximately 30,000 new cases every year in the United States. There are fifteen types of meningiomas presenting a wide range of physical, emotional, and occupational challenges – and can ultimately be life-threatening.
‘For All Those Who Aren’t As Lucky’
At the 2019 Charlotte Brain Tumor Race, Mo-Over Brain Tumors, now dedicating their fundraising to the MRF, raised nearly $6,000 to help kickstart the fund.
With little time to celebrate these accomplishments, Sharon and her team are already looking forward to the 2020 Charlotte Brain Tumor Race on Saturday, March 21; the first planning meeting occurred on Monday, August 5. Mo-Over Brain Tumor will again earmark their proceeds to the MRF, and Sharon’s commitment is as strong as ever.
“When I was first diagnosed, I was the first person – and that’s including all of the patient’s that I’ve come in contact with during my nursing career – that I had ever heard of or known personally that had had a brain tumor,” says Sharon. “And since then I lost count of how many people I’ve met or spoken to that have or have had brain tumors. It’s incredible to me how many of us are out there. So, when I first started [with NBTS] it was more personal…but over the years it’s kind of grown to the sense of, ‘I’m going to keep doing this for all the people that we’ve lost and for the people that can’t be as involved as much as I can be.’ Because even though now I’ve had two [tumors], I’m healthy. I go to work, hold a full-time job still driving every day. So, I’m lucky and I realize that. So, I’m going to continue to support this organization for all those who aren’t as lucky.”
Visit braintumor.org/our-research/meningioma-research-fund to learn more about the Meningioma Research Fund.