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Staying Strong as a Caregiver: Positivity in the Face of It All

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

As a caregiver you go through many emotions and being positive or optimistic may not be one of them all the time. However, having a positive mindset is the only thing that will keep you going day in and day out.

Positivity has many definitions when it comes to being a caregiver. It can mean being optimistic knowing MRI scan results weren’t what you hoped for. It is enjoying the little moments with your loved one. It is being hopeful that the next round of treatment helps.

Taking care of your loved one who has been diagnosed with a brain tumor is hard, and it is okay to admit that! When my mom was battling her glioblastoma, it was hard for us to be upbeat 24/7, but the one thing that kept us going was her infectious smile and laugh. Going to radiation appointments or chemotherapy sessions are not “fun” per se, but you can make them that way.

When my mom was in her various appointments, we would always make a game out of it. During occupational therapy, we would quiz her on the way home to see if she remembered what she had learned that day. On her last day of radiation, we all went out to dinner at one of her favorite restaurants. You learn to celebrate the not-so-normal events, but that’s what gets you through this hard journey.

This disease does not hold back and as a caregiver you witness that firsthand. It is incredibly hard to see the positive aspects knowing your loved one is sick, especially when you see them going through surgeries, treatments, hearing bad results, and so on. But, taking on the role of a caregiver is a major step in a positive direction in the first place. You are looking on the right side of things and adjusting to your new “normal.”

Even 3 years later after my mom’s passing, it can be hard to not get caught up in the special moments. Not being able to have her at my brother’s wedding was incredibly hard, but he had a special dance with myself, our aunt, and her best friend in her honor. It is still emotional on her birthday, but we celebrate as a family anyways. You have to look at all the life situations with a glass-half-full mentality because that is what your loved one would have wanted.

Being positive as a caregiver doesn’t mean you have to be happy every day, I don’t think that is humanly possible. However, it is taking on this hard journey knowing that you are doing everything you can for your loved one and enjoying every minute you have with them. 

Finding Support Throughout Your Journey

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Written by Head for the Cure Ambassador and Anaplastic Astrocytoma Survivor Molly Marco

When I was first diagnosed, I was so overwhelmed by everything coming at me—I didn’t know where to turn or what to do. I was still taking everything in and wondering what came next.

Once that tornado settled down, I wanted to talk to other people in a similar situation. I wanted to know what to expect. I wanted reassurance, but I also wanted “real talk”; from the doctors and nurses, but more than anything I wanted to know the experiences of my fellow patients. I think we often need both; “What does this mean?” v. “What does this feel like?”

Early on, right at diagnosis, my neuro-oncologist and nurses (my brain A Team) made sure I had pamphlets and information about what organizations and groups are available to me. Yours should, too. If not, start bothering them to start doing that. Some hospitals have monthly group meetings for specific cancers, including brain cancer. If not, here are some organizations to look into: Gilda’s Club, National Brain Tumor Society, American Brain Tumor Association, Imerman Angels, and Twitter’s monthly #BTSM (Brain Tumor Social Media) chats.

Gilda’s Club

I live very close to a Metro Detroit Gilda’s Club, so that was one of my first stops. Because of my seizures, I couldn’t drive for 6 months (+2 more months when I had a seizure right before my craniotomy). I walked to the closest support place. Gilda’s Clubs are great. They are very cozy and have lots of activities such as yoga, art, cooking, and support for patients. You can be 25 years in remission or wearing your Optune device. It doesn’t matter. It’s a great way to interact not only with brain cancer patients, but people going through similar journeys with different cancers.

Gilda’s Clubs are in several cities including New York, Kansas City, Chicago, and Twin Cities.

National Brain Tumor Society (NBTS)

Aside from the outstanding annual Head to the Hill event in Washington D.C., NBTS also hosts monthly social media chats. Many of these people are active and social on other medias, so it’s comforting—you feel like you’re in a live chat with friends (because you are). If you’re new, you’re ushered right in and will have people with advice and information.

Learn more about NBTS here.

American Brain Tumor Association (ABTA)

I first knew about ABTA because I basically came home with a briefcase full of ABTA booklets. I didn’t have to ‘Dr. Google’ Anaplastic Astrocytoma because I had a booklet all about it thanks to this organization. I had also heard of ABTA because one of my buds in my hospital’s brain group talked about a conference in Chicago. I went when I was nearing the end of my chemo cycles and wanted to meet people and learn things. That was the meeting of one of my first Twitter #BTSM chat friends, Sabine. I learned a lot. I also participated in one of their BT5Ks the following year (even got to be on my local news talking about my brain cancer patient experience).

Learn more about ABTA here.

Imerman Angels (IA)

They are so cool. An organizations that links patients together, AND links caregivers with other caregivers. It’s one of the first things I did because I was stuck at home: I couldn’t drive, I was exhausted, and still healing. I wanted to know what someone else went through who had my same diagnosis (Anaplastic Astrocytoma) and was similar to me (female and mid-30s). I was almost immediately linked with someone (a “mentor”). I wasn’t a fan of phone calls (you can even say what kind of interaction you want: phone, email, both), so she emailed me right away and answered my questions about what to expect from radiation and my Temodar. A year or so in, I felt more impulse to help newly diagnosed or people in more rural areas with less access to fellow cancer comrades. I moved away from being a mentee, and onto being an IA mentor. I love it. Being able to help someone else, gives me courage and strength.

Learn more about Imerman Angels here.

#BTSM (Brain Tumor Social Media) chats on Twitter: First Sunday of every month at 9:00 PM EST

You don’t have to have a Twitter account to observe, but I highly recommend having one to fully participate in the chats and to take advantage of the company, the knowledge, the feedback, and perspectives. Start by following @BTSMchat account on Twitter. Here’s a guide on how to participate in these chats. You can make friends really quickly. Sometimes it helps just to follow some of the long-time followers on the account, pretty soon you’ll get the hang of things. Because of the amazing folks here, I learned about events (such as Head to the Hill), and when I go to these events, no matter where I am (D.C., Chicago, Detroit, Los Angeles, or San Francisco)—I feel like I have friends. I have name/memory issues, so it’s kind of crazy. I know people more by their Twitter handle (by repeatedly using them, I think it’s a long-term memory!) than by their actual name.

You may feel alone when you are newly diagnosed or experiencing a new growth or worried about someone you love. I want to reassure you in at least this one small way: You are NOT alone. And pretty soon, you can be the person helping other people navigate their journey. And when you’re helping, suddenly the anxiety you were feeling starts to diminish. THAT gives me PURPOSE.

Learn more about Molly’s story by following her on Twitter, Instagram, or Facebook!

Reflections on a Life Well-Lived: How Will Pye was “Blessed With A Brain Tumor”

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By many measures, Will Pye is an unconventional man. In early 2011, he was diagnosed with a brain tumor the size of a golf ball—an experience that most might describe as shocking, disruptive, or scary. Pye, instead, says he “experienced a deep peace, knowing all was well,” and at this moment his memoir Blessed With A Brain Tumor reveals itself to be a journey through life as a human with brain cancer unlike any other. Before his diagnosis and surgical removal of  what he would eventually learn was a stage three anaplastic astrocytoma, Pye had spent a decade as a student of  Zen Buddhism, a “multi-disciplinary, multi-modality, cross-cultural enquiry into the nature of reality and ultimate truth,” and it was this training that informed his approach to treatment for his brain cancer, as well as the manner in which he wanted to live for the rest of his life: full of love, gratitude, kindness and joy. Consequently, his first book is equal parts memoir and manual.

Not everyone with a brain tumor experiences it as a blessing, but Will Pye makes a compelling argument to see it that way. The first half of the his book, Part One: The Seven Gifts invites us to explore the gifts of love, surrender, death, guidance, purpose, co-creativity, and oneness, and each chapter is followed by a series of prompts for the reader to contemplate incorporating these wisdoms into our own lives. Pye writes “in viewing the diagnosis as a  gift and opportunity, I was able to encounter gift and opportunity.” He beckons us to do the same with a series of chapter-ending questions he labels “Questions for Altering Reality,” such as

  • Do you allow yourself to receive the love around you?
  • Who might you speak to now, and express your love and appreciation for?
  • Will you first allow a moment to breathe in love for yourself?

In particular, his account of surrendering to his diagnosis is profound and transformative. Rather than experience surrender as giving up or a defeat, Pye asks us to imagine ourselves as lying on an inflatable inner tube at a water park, floating down a lazy river. Rather than struggle with fear that we could at any moment sink and drown, or allow our experience to be marred by the screams of joy of children, he asks us to surrender to the experience, take joy in the beautiful sun-filled sky, and feel peace as we make our way around the twists and turns through the park. His unconventional perspective is an empowering and profound method for experiencing any of life’s twists and turns.

The Life Coach with a Brain Tumor

Part Two of Blessed with a Brain Tumor is called “The Seven Invitations,” which he calls an “opportunity to create the life you desire.” At the end of each chapter, the reader is asked to find a paper and pencil and complete a series of exercises meant to provoke deeper thoughts and refelctions about one’s life. One of these begins “What makes your heart sing? What activities leave you feeling vital, alive, and inspired?”

For any person who is interested in experiencing a more joyful, peaceful, and fulfilling life, Will Pye is there to guide you through that inner, deeply personal process.  His ability to honestly share his most difficult moments, his decision-making process, and his joy, has created one of the most compelling and truly useful accounts of brain cancer ever written.  

Blessed With A Brain Tumor (2014) by Will Pye. Available in paperback and ebook on Amazon/Kindle and willpye.com

Other resources:

Podcast Interview with Will Pye:
https://the-reality-revolution-podcast.simplecast.com/episodes/interview-with-will-pye-author-of-the-gratitude-prescription-and-blessed-with-a-brain-tumor-8HY2AZUC

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.

Find Support Resources

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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.