It is estimated that 87,000 people will be diagnosed with a brain tumor this year, and 14.6% of those diagnoses will be a glioblastoma. From OurBrainBank “the GBM Bill of Rights was crafted from the results of a 2019 survey taken by 400+ GBM patients and caregivers. It includes the right to: personalized care, genetic testing, a second opinion, experimental trials and treatments, psychological support, money-blind treatment, fast-tracked MRI results, best end-of-life care, and more.”
Written by: Courtney Benisch – Regional Relationship Coordinator for Head for the Cure
This year has been nothing but a roller coaster, and as a caregiver, I cannot even imagine what it is like watching your loved one who is battling brain cancer go through it as well. The pandemic has not only affected treatments, surgeries, and general doctor’s appointments, but it has also added another layer of stress for your loved one and the rest of your family.
Supporting Brain Tumor Patients in a Pandemic
Now more than ever, patients and caregivers may be turning to the internet for information about a brain tumor diagnosis. With limited in-person interaction at hospitals and the increase in telehealth appointments, it can all be a bit overwhelming knowing where to turn for help. Talking with your doctors and nurses is incredibly important but using a website like Brains for the Cure could be a bit more comforting with its inclusion of stories from patients, caregivers, and doctors.
Changes at Work
One thing it has affected me personally and professionally is our amazing 5K events. When I started working for the foundation back in 2018, I had already had two years of supporting Head for the Cure under my belt as a participant. However, being able to help others even more by planning our incredible 5K events made it even more special. Going into 2020 I was excited to see the amazing survivors, strong caregivers, and supporters in the various cities I work with. Everyone has such a special place in my heart and not being able to hug them all stinks!
When COVID-19 hit, my world came to a halt, as it did the rest of the world. Personally, I have been working remotely for over a year now so being at home 24/7 wasn’t something new to me. However, it was the heavy news cycle, not being able to go out and get some fresh air when needed, and general blanket of anxiety that set in. At Head for the Cure, we now had to figure out how to hold our monumental 5K events and fundraisers in a way we have never done before. It has been hard work, but so inspiring at the same time.
Moving our physical events to online events has been a whirlwind experience because we want to make sure all of our aspects of our physical 5K events for every single city is shown online. The biggest thing for me about the transition was “how are we going to honor survivors and caregivers still?” I think we have figured out not only how to do both of those things, and even more now. I’m so thankful we get to honor and celebrate everyone in such a different way.
Honoring My Mom Virtually
Now that my hometown event is coming up in August, it has me thinking how I want to honor my mom in our virtual event. There are so many options! If you haven’t had the chance to watch one of our virtual events, you can find them here. You get to see so many more aspects of what Head for the Cure does on “race day” and I am excited to get brainstorming with my family. Here are some of our ideas so far:
- Record a testimonial with my brother and stepdad via Zoom
- Ask family and friends to send me their testimonials about why they support Head for the Cure
- Create a short video from photos of past events to include in the Wall of Hope slideshow
- Send in my mom’s favorite quote or memory of her for the Celebration of Life video
How will you get involved in our virtual events? Learn more at headforthecure.org.
When someone is diagnosed with a brain tumor, they can feel distant or alone from family, friends, and others as they fight this disease. Head for the Cure and Brains for the Cure hope to combat this feeling by being an outlet for support, providing a sense of community and hope, and a helping hand as a resource throughout the journey. As a way to support these missions, Head for the Cure, along with the larger brain tumor community, observe the month of May as Brain Tumor Awareness Month, however it is not officially designated as such across the country. Some cities and states have approved legislation that officially recognizes Brain Tumor Awareness Month, and others are beginning to follow suit.
Ohio State Representative Jeff Crossman has first-hand experience with this terrible disease. His grandfather was diagnosed with a glioblastoma in 1986. Then 30 years later, his mother Rose was also diagnosed with the exact same brain cancer. Rep. Crossman reflected, “In that 30-year span, we were astounded to learn that her prognosis was not much better in 2016 than if she was diagnosed in 1986.”
With an estimated 80,000 people newly diagnosed in 2019 alone, the average survival rate of 14-16 months for glioblastoma patients, and only 4 FDA approved drugs and 1 device for all 120 different types of brain tumors, Rep. Crossman turned his personal grief into action in honor of his mother, grandfather, and the thousands this affects every year. He knew the progress to find true comprehensive treatment could not be made possible if we didn’t have a true, dedicated awareness campaign surrounding brain tumors.
Rep. Crossman sponsored the House Bill 230 proposing May as Brain Cancer Awareness Month in the state of Ohio. After passing the Health Committee, Rep. Crossman contacted several advocacy groups and constituents to provide written testimony to encourage a vote on the floor. A hearing was held on November 5th with a few representatives speaking to their own experiences. One of those advocates was Head for the Cure Ambassador, Sam Mierzejewski.
“A brain cancer awareness month is important because there simply aren’t many brain cancer patients who survive long enough to advocate for themselves,” Mierzejewski testified.
On December 12th, Rep. Crossman shared his story with the Ohio House of Representatives as he spoke about the proposed H.B. No. 230. In addition, Representative Scott Lipps, and the Ohio House Health Committee supported the bill and urged the House to vote yes on this bill. Representative Kyle Koehler also spoke to the support of the bill, specifically in honor of one of his constituents who passed away on August 25th from brain cancer, eerily the same day Senators John McCain and Ted Kennedy passed away after their fight with a glioblastoma.
With 87 affirmative votes and no negative votes, the proposed bill passed the House and is moving on to the Senate.
“Head for the Cure was honored to help connect the Ohio brain tumor community to Rep. Crossman to partner in our same missions in building awareness for this terrible disease,” commented Jenna Heilman, Executive Director. “We need to continue efforts to pass this state by state to truly combat this disease.”
If you would like to join the fight in helping make May officially Brain Tumor Awareness Month across the country, please contact Head for the Cure.
Written by Molly Marco – Head for the Cure Ambassador and Anaplastic Astrocytoma Survivor
Malignant vs. Benign
As a malignant brain tumor patient, or in more understandable layman’s terms a brain cancer patient, I always struggled to find the same passion and empathy for benign brain tumor patients. It feels a bit, like, “Whatever. It’s NOT cancer, so it isn’t as deadly. It’s not the same and I’m jealous.”
I’m not entirely wrong…it’s not cancer, but I am also definitely not entirely correct. Like malignant tumors, it’s not simply a matter of type and grading. In fact, the tumor location is often just as critical if not more so than the designation of malignant or benign. An inoperable or inaccessible tumor can be just as deadly as a cancerous tumor.
All Brain Tumors Effect the Body
The whole body is important, and ideally, every single piece should be working properly. But we can often live a full life with broken bits and missing pieces. The brain itself is one of those necessary components in our body. We can function without a few pieces. We can manage depending on what pieces those are, and what they effect. Overall, all types of brain tumors are tricky and affect each person in different ways.
It’s hard for the folks without these issues to understand. A person in a wheelchair due to the side effects of a brain tumor may not necessarily have an aggressive malignant brain tumor such as a glioblastoma. Sometimes it’s a low-grade jerk in a nasty location. In contrast, the casual observer wouldn’t even notice that I have a high-grade malignant tumor because of the tumor location unless I was actively seizing and falling off a bar stool.
There are also sleeper tumors such as a Meningioma, which is for the most part a benign tumor to my knowledge. But a lot of folks won’t even know they are living with this tumor until it has grown quite large becoming deadly. If the tumor is growing in an area that makes it inoperable, there isn’t much to be done beyond radiation.
The good news is that if someone has a benign tumor in an operable location, has a good neurosurgeon, and participates in necessary rehab, they’ll likely get back to their normal lives. For example, an acoustic neuroma is another benign tumor that grows on the nerve used for balance and hearing. They can grow quite large. It can cause loss of hearing, tinnitus, feeling of having what I call “the spins” (dizziness), or blurred vision.
Recovery is Different for Everyone
My grandma had an acoustic neuroma behind one of her ears when she was in her 60s in the 1970s. She had a successful surgery and while the doctors told her it would be weeks for her recovery, she was on a plane and traveling to Argentina just two weeks later. However, some acoustic neuroma patients may need more rehab depending on size and location of the tumor. Kelly Stafford, wife of Detroit Lions’ Matthew Stafford, was diagnosed recently with the same tumor, and had a 12 hour surgery. Recovery takes some time. Her balance was off. She still had to deal with dizziness. It’s not easy for anyone to go through brain tumor treatments, and no two patient’s treatments are the exact same.
It’s important to understand that while not all brain tumors are cancer, that doesn’t make them a fun walk in the park in comparison.
There are No Good Tumors
I remember learning that my brain tumor was a “middle of the road” malignant tumor, an anaplastic astrocytoma. There’s no real fix, and “Middle of the road” still stinks. It’s supposed to come back and get me at some point, either as itself as a recurrence or heightened as a GBM. I learned that a lot of other patients are weirdly told similar things like, “You have the good one”, if they have a low-grade Oligodendroglioma. What’s weird is that I know patients with “the bad one”, a GBM, who have outlived patients with “the good one” or the “middle of the road” tumors. There is no “good” brain tumor. Benign brain tumors aren’t “the good kind.” I mean, if I had to pick, I’d still rather have a non-terminal, fully operable, benign brain tumor over a terminal malignant one.
ALL brain tumors suck in different ways. They take up space they don’t own. I don’t like it. You shouldn’t either.
A Note from Head for the Cure Executive Director
Head for the Cure was thrilled to endorse the resolution of officially making July 17th National Glioblastoma Awareness Day. The inaugural day sparked a breathtaking movement not only for those who support Head for the Cure, but those affected by a brain tumor across the country. Never before have the major brain tumor foundations and organizations come together for one joint cause. It was absolutely amazing to watch!
This day was championed by the National Brain Tumor Society because of their working relationships with Congress and other key political figures. The resolution was unanimously passed after gaining several sponsors in the Senate for this resolution including Lindsay Graham (SC), Elizabeth Warren (Mass) and Roy Blunt (MO), to name a few. The NBTS then included other brain tumor advocacy groups including Head for the Cure to join the movement.
Through social media and other messaging, we heard powerful stories of survival, inspiration from personal journeys and struggles and remembered those who have lost their battle with a glioblastoma.
Bringing the brain tumor community together is incredibly important because a brain tumor diagnosis can be an isolating feeling. These stories connected those who are fighting or who have supported someone throughout their diagnosis; moreover, it also brought the movement to people who had no real idea about what a brain tumor diagnosis means to a person’s life.
Nothing is more compelling than sharing raw and vivid stories that enhance the human spirit, celebrate life and inspire others to carry on in someone’s memory. This disease is bigger than one organization…bigger than one person. This disease is illusive, has taken too many lives, and
the best way for us to find a cure is by continuing to collaborate for the greater good. No one fights alone!
Jenna Heilman is the Executive Director at Head for the Cure Foundation (HFTC). HFTC raises awareness, funds and hope for the brain tumor community in support of brain tumor research and programs, like Brains for the Cure. If you’d like to learn more about how to get involved to share your story or advocate for brain tumor patients, email [email protected].