Brains for the Cure

Get Help With Brain Tumors

Laura Cooke

Staying Active and Physically Fit

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Written by Lisa Joerling – Head for the Cure Ambassador and Ganglioglioma Survivor

Benefits to Staying Active

Staying active has been such an important part of my brain tumor journey. Being physically active has been a great way to take care of my body and my mind. 6 years ago, when I had surgery, one nurse told me to take a walk around the block each day just to get outside and get moving, even if it was just going down the street. As I continued to heal and went back to college, I found I had plenty of opportunities to be active including yoga, gym classes and I found a love for running, specifically 5Ks. This was especially great when I discovered Head for the Cure the following year.

How I Stay Active

I’ve been able to find a great gym with a fantastic community of people, and my gym instructor is an awesome motivator and helps to push me to be my best. Staying active can look like many things. I enjoy challenging myself with different classes including yoga, barre, Zumba, cycling and most recently I have done some strength training/weight classes. I enjoy playing tennis and walking my dog or going on a run. The biggest challenge I have in staying fit is eating a healthier diet. My gym instructor always says you can’t out work a bad diet, so I try and eat nutritious foods and stay hydrated each day. I also use technology to help me stay fit. My Fitbit helps track my steps, sleep, heart rate and amount of days I exercise. I sync it with a calorie tracking app to track my food and nutrients.

Staying Motivated to Stay Active

I certainly have days where I am too tired to workout, having a headache, or my nerve pain is flaring up. I have worked on being patient with what my body needs each day and some days rest is the best thing to help me feel better. Treatment and fatigue can also make staying active a challenge. Going on a walk, doing chores around the house, gardening, playing with dogs and children can all be great low impact activities. Finding activities you enjoy and finding a workout buddy can help you stay active wherever you are in your brain tumor journey. We don’t have control over a lot when it comes to brain tumors, but we can control how we treat our body and try and be our best self each day.

Staying Strong as a Caregiver: Taking Care of Yourself

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Written by: Courtney Benisch – Regional Relationship Coordinator for Head for the Cure

The role of being a caregiver is all in the name, caring for someone else in any type of capacity. We care for our loved one battling a terrible disease 24/7, but do we ever return the favor to ourselves? Being a caregiver for my mom took a toll on me and my family mentally, physically, and most of all, emotionally. We never thought to take a step back and care for ourselves when my mom was fighting her battle with brain cancer because our focus was on her, and any doing anything else felt selfish. I want you to know that you are not the only ones who have felt this way.

Being a caregiver is a title you will have for the rest of your life, but at a point you realize it goes both ways: caring for your loved one and yourself. After my mom was diagnosed with a Glioblastoma, I naturally took the role of the leader. I made sure my mom, stepdad, and brother were all doing okay, but I never looked inward. I internalized everything because I knew I had to keep strong for my family.

After my mom passed, I moved out of my parents’ house, moved back in with friends and returned back to work. I thought that going back to living how I did before my mom got sick was the easiest way to grieve. I would distract myself by immersing myself into work, going on trips, and distracting myself any way I could. I was wrong and I am still paying for it to this day mentally and emotionally.

According to the Anxiety and Depression Association of America 40%-70% of caregivers show symptoms of depression with approximately a quarter to half of these caregivers meet the diagnostic criteria for major depression.

There isn’t a certain way to process trauma or grief, but there are healthy and non-healthy ways to go about it. There is a reason why they call it the “stages” of grieving because you go through them in different ways and at different times of your life. Knowing myself, I knew I had to talk to someone about what I had gone through. The hospice facility that my mom was at offered counseling, so I started going right after she passed.

When I moved back in with friends, I started to feel like a “normal” 20-something again, but I was still internalizing every feeling about my losing my mom. My new normal wasn’t what I thought it would be. I would get headaches from the stress, my anxiety skyrocketed, and depression set in. I knew at that point I would need to see a licensed psychologist. It took a while to find the right one, but when I did, it helped immediately.

My family and I have learned to manage our grief in different outlets that work for us. We still participate in Head for the Cure events around the country to honor my mom. My step dad helps out with a local non-profit, BeHeadStrong, since they were a huge part in helping us when my mom was sick. Also, as a high school teacher my brother has connected with other students who have gone through the same thing.

There is no shame in going to talk to someone about your life and your feelings, and as a caregiver I felt like there was a stigma about going to therapy. Even three years after my mom’s passing, I continue to go because the one thing I’ve learned is that grief will be with you forever, but you are in control of how you manage it. As a caregiver, at any age, you need to take care of yourself too. Whether it is taking mental health days, going to concerts, talking with a therapist, the options are endless.

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Facts About Pediatric Brain Tumors

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Brain tumors can affect people of any age, gender, race, and at anytime in their lives. This means there is an equal need for research in pediatric brain tumors as there is adult brain tumors.

  • More than 28,000 children (0-19 years of age) are estimated to be living with a brain tumor in the US
  • The most prevalent brain tumor types in children (0-14):
    • Pilocytic Astrocytoma
    • Malignant Glioma
    • Medulloblastoma
    • Neuronal and mixed neuronal-glial tumors
    • Ependymoma
  • The cause of most childhood brain and spinal cord tumors is unknown.
  • About 4,600 children and teenagers are diagnosed with a primary brain or central nervous system tumor each year, or equal to 13 new cases per day.
  • While survival rates for many childhood brain tumors have improved over the past 30 years, survivors often suffer from lifelong side effects caused by their illness as well as by treatments such as surgery, radiation and chemotherapy.
  • Malignant (fast-growing) brain and spinal cord tumors are slightly more common in boys, while non-malignant tumors are slightly more common in girls.
  • Pediatric brain tumors are the leading cause of cancer-related death among children and adolescents ages 0-19, surpassing leukemia.

Statistics provided by:
A Kid’s Brain Tumor Cure PLGA Foundation
Pediatric Brain Tumor Foundation
National Brain Tumor Society
American Cancer Society

Choosing the Right Doctor for Brain Tumor Treatment

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Finding the right doctor, and entire treatment team, for brain tumor treatment is incredibly important for a patient. Doctors and survivors from across the country share where they see the importance in choosing the best team for treatment.

Dr. Nina Paleologos of Advocate Aurora Health shares the importance of choosing the right neurosurgeon based on the type of tumor and placement. An example she shares is having surgery for only a biopsy versus having a tumor resected. In the case of having a tumor resected, depending on its placement, a neurosurgeon with experience doing awake craniotomies could be an important factor to choosing the right surgeon.

Dr. Roy Jensen of the University of Kansas Cancer centers advises most if not all patients to seek second opinions when available. He also encourages seeking treatment at a NCI Designated Cancer Center when the option is available. When looking at centers for second opinions, the doctor that provided the initial diagnosis should be able to suggest options to you.

Hillary is a grade III/IV brain stem astrocytoma survivor and was treated at Texas Oncology. After her first MRI, she immediately knew she needed to see a neurologist, but which neurologist was the real question. With the help of family physicians she found Dr. Groves. Hillary notes that it’s important to find someone you can be comfortable with throughout the course of treatment and after.

Dr. Nick Avgeropolous from UF Health Cancer Center shares the value in feeling confident in the treatment team you’ve assembled. “But, I think that there needs to be also some trust in the person who’s caring for you or the team who’s caring for you or some independent validation or verification. And that’s how confident that a person is doing the right thing or making the right decisions, irrespective of outcome.”

Lisa is a ganglioglioma survivor and continues to manage her symptoms. Lisa knew she had the right surgeon from the moment she met him. She felt a level of comfort with him that was important to her and her family throughout her care, and she describes him as caring, funny, and on top of everything.

Colin is a grade II oligodendroglioma survivor and was treated at MD Anderson. With Colin’s tumor not needing immediate surgery, he and his family took the time to find the right hospital and doctor for his surgery and treatment. From the recommendations of family, friends, and research, Colin chose to seek treatment in Houston at MD Anderson.

Brains for the Cure maintains a close relationship with providers at many of the country’s best brain tumor centers. Explore these sites on our “Find a Doctor” page. Many of these sites are National Cancer Institute designated research cancer centers, and members of the Brain Tumor Trials Collaborative.

Advocacy for the Brain Tumor Community in Ohio

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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.

View the full testimony here