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Sharing the Journey

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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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

Clinical Trials: Saving Lives One Treatment at a Time

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Written by Kyla Burridge – Head for the Cure Ambassador and Survivor

November 7th, 2018

A day that will forever be ingrained in my memory and a part of my life. I remember the day like it was yesterday. I was waiting anxiously with my parents to get the results of my biopsy back. I remember it instinctively because my doctor was taking longer than normal to see us (shout out to Dr. Lindhorst at Hollings Cancer Center!). Finally, after what felt like hours, my doctor entered into our room, but he has someone with him this time. That day I was diagnosed with brain cancer. The rest of the conversation was a blur. I somewhat remember him telling us what grade it was, 3 but edging to a 4, and because of the location of this tumor (my brainstem), I was not eligible for surgery to remove it. I couldn’t do anything except cry. How could this happen to me? What did I do to make myself have this tumor? And in my brain, no less. Eventually, my doctor introduced us to the man who entered the room with him, and who seemed to be the reason they were late, Bo Keller. He would become my clinical trial advisor. 

Bo introduced himself to me and my family and explained his role at the Cancer Center, specifically within the neuro-oncology department. The reason for them being extra late was because once they determined exactly what this mass was in my brain, they instantly began looking for clinical trials for me to participate in. Talk about going above and beyond for your patients.

Learning About My Clinical Trial

Bo, along with the help of Dr. Lindhorst, began explaining the clinical trial that they had found for me. It really was only for patients who have a glioblastoma (GBM), the worst and most severe type of brain cancer, but because of the location and severity of my tumor, they felt that I would be an excellent candidate for this specific trial. I tried my best to understand the medical jargon, but it was difficult.

The trial used a medication by the name of trans sodium crocetinate (TSC). Tumors don’t like oxygen, and TSC increases the diffusion rate of oxygen into my tumor. Along with the help of chemotherapy and radiation, TSC would play somewhat of a catalyst role in attempting to kill any cancer cells it could in my brain. Now, that sounds really awesome, right?! Well, I was a little skeptical because I know how clinical trials go. You have a placebo group, which doesn’t receive the medicine, and a test group, which does receive the medicine. I wanted to make sure that I was in the test group and received any medication I could to get this thing out of me.

Well, I slowly learned the real reason why it took Bo and Dr. Lindhorst so long to meet with us. The TSC trial was in its first stages, which meant there would be no placebo group, and all of the participants would be receiving the medicine! I was stunned and at a loss for words. I also would be the only participant to be receiving TSC in the entire state of South Carolina and one out of eight participants in the entire United States! Of course, this intrigued me and made me want to start treatment right away. But my mom, who’s a nurse, said we needed to do some research on TSC ourselves before we made any decisions. So we took our pamphlet of information from Bo and went home to do our research. 

Do Your Research

My mom found some amazing information about TSC, and all of the studies had positive results with every outcome. Once my parents and I talked over the information, it reassured me to go through with the clinical trial. At my next appointment we told Bo that I would be going through with the trial. He explained that I would receive the TSC intravenously (through an IV), and would receive it three days out of the week that I was also receiving my chemotherapy. At first, it would only be a very small dosage, but would eventually be increased. I signed the consent forms, but was immediately reassured that at any point during the trial if I wanted to stop treatment I could. I was determined to go through with it so I could get this tumor out of me, and to potentially help future brain cancer patients.

We went to the infusion suite for the nurses to check my veins. Apparently, even though I was 22 at the time, I had pretty weak veins. They suggested putting a port in me because the days I would be receiving the medication would be Monday, Wednesday, and Friday. The port would have to be surgically put in me and would essentially delay my treatment start date. To say I wasn’t thrilled was an understatement. I felt like I wasn’t getting that much medication to need a port, and I wanted to start treatment as soon as I possibly could, but this was getting in my way. I thought about not going through with the trial for this specific reason. But let me tell you, God works in mysterious ways. 

Later that day, Bo texted me and told me that the study said as long as I received the medication three days out of the week – it didn’t matter what specific days I received it. Meaning I could get it consecutively for those three days, aka, no port needed! I was so relieved. The plan going forward would be that every Monday, Tuesday, and Wednesday during the weeks that I did chemotherapy. I would receive the TSC through an IV that I would keep in my arm for the three days I received it and before I would receive my radiation. We did this for roughly six months.

Luckily, I didn’t have too many side effects from my triple threat treatment. The biggest was fatigue – no nausea or anything else (thank the Lord!). Towards the middle of my TSC treatment, I had to spend a day in a hospital room getting different dosages to determine which would be the sweet spot to see the most results. That was a long and grueling day. Luckily, I had both of my parents there to keep me company. That was also around the time Bohemian Rhapsody came out, so we were distracted by the fierceness that is Freddie Mercury. Eventually, it was found that a bigger dosage could have potentially better results, so for the last few months I received a bigger dose of the TSC. 

With this specific trial being only in the first stages and only having 8 participants in it, I wasn’t informed about anybody else’s results or how they have fared from the treatment. The only information that I could be told was if there were any serious side effects that came about. Since I have stopped TSC, I’m told that the trial sponsors are gathering all of the information and data from myself and the other participants and the study will eventually open up to even more patients. 

Clinical Trials Matter

Did you know that more than 700,000 people in the United States are living with brain tumors? However, there are only four drug treatments and one device treatment approved by the FDA to treat the more than 120 types of brain tumors. Clinical trials are necessary to fund. These trials could potentially save the lives of so many people living with these tumors where chemotherapy and radiation has failed. When I was approached to be a part of this clinical trial, I may have been weary at first, but now I am so excited to see the results, not only in myself, but to see the results in others as well. Even though this journey was unexpected in my life, I have been presented with so many amazing opportunities that I could not pass up. If anyone is ever in a situation where they are presented to participate in a clinical trial – DO IT. It could save your life and you could help save others. Clinical trials save lives, and it surely has saved mine. 

Managing Symptoms

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

Managing the symptoms of my brain tumor is part of my everyday life. Since my tumor has come back, in the last year my symptoms have increased and I have started a new medicine to control the focal seizures in my right hand. The biggest symptoms I am managing currently are fatigue, focal seizures in my hand, loss of sensations in my hand, and headaches. I have adapted to each of these symptoms and side effects differently. 

Focusing On Yourself

I focus on self-care each day to maintain my physical and mental health. I love to workout, and exercising has been a great way to keep my body healthy and my anxiety down. I like to use a variety of workouts; strength classes, yoga classes, cardio, and running are all helpful for me.

I have adapted to the loss of sensation in my right hand by doing hand therapy and learning how to do most things with my left hand. I have tried various ways to reduce the nerve pain in my right hand including; hot/cold packs, compression gloves and this past summer I started acupuncture. The acupuncture has been great, and my hand pain is almost completely gone. And it has helped my fatigue and seizures, as well. I also keep notes on my phone for my doctor’s appointments. This is helpful for me to be able to describe when I am having headaches and any patterns I am seeing in my symptoms.

The seizure medication I take can make me very tired and this year I focused on setting boundaries on how much I can do and when. I have to take time to rest and get enough sleep so I can function well the next day. This can be a hard thing for people around me to understand because some days I feel great and energetic, while some days it can be hard for me to do things with my fatigue.

It’s More Than Physical

A brain tumor also brings more than just physical symptoms. Yoga is a great stress reliever, massages are an awesome relaxation tool, and I see a psycho-oncologist at the Westwood Cancer Center in Kansas City to help manage the anxiety around my health.

I have a great support system of family and friends and talking about my health to them is very therapeutic for me. I often schedule something fun or do something special for myself around the time I have MRIs or appointments for a great distraction. 

One Day at a Time

My advice to anyone who is also managing side effects and symptoms of their own is to be patient with yourself. Some days are good, some are bad, and a lot are in between. You are the expert on you and how you are feeling. Make sure you do what your body needs. Whether that is getting more sleep, starting to or changing your exercise, eating more nutritious food, finding more social interaction, having alone time, different types of medicines, the list can go on and on of what you need for yourself. It all happens one day at a time!