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Brains for the Cure Partners With GammaTile®

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Brains for the Cure (BFTC) is thrilled to announce a new partnership with the creators of GammaTile®, GT Medical Technologies, to provide resources and guidance for caregivers of brain tumor patients.

BFTC is made possible by donations to the Head for the Cure Foundation. BFTC was launched as an online patient navigator in 2017 to help patients understand, manage, and cope with all the twists and turns of a brain tumor diagnosis. After a re-launch in 2019, BFTC provides resources, news updates, and video testimonials to help patients through their journey. The next phase, complete in 2020, focuses on supporting caregivers who are an integral part of a patient’s diagnosis.

GT Medical Technologies has a purpose of “improving the lives of patients with brain tumors.” Their FDA-cleared device, GammaTile®, was created to address an unmet need.

GammaTile® Therapy is a Surgically Targeted Radiation Therapy (STaRT) that is implanted in the last five minutes of a brain tumor removal surgery, and immediately begins delivering radiation treatment to remaining tumor cells.  Patients receive their radiation while going about their daily lives, without the need for follow up appointments for radiation treatments.  By getting a head STaRT on fighting the tumor, GammaTile® Therapy can extend local recurrence-free survival with minimal complications, reduced patient and caregiver burden, and assured treatment compliance.

Together, BFTC and GammaTile are committed to supporting brain tumor patients, but they want the caregivers in the brain tumor community to feel the same amount of support as an important part of the patient’s team. The Brains for the Cure Caregiver Initiative will be powered by a grant from GammaTile®. 

Brains for the Cure looks forward to this growing partnership with GT Medical Technologies and continuing to serve caregivers and patients through their brain tumor journey.

Navigating Telehealth During a Pandemic

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The Neuro-Oncology Branch of the National Cancer Institute and Wilmot Cancer Institute of the University of Rochester presented their webinar “Navigating Brain and Spine Tumor Care through Telehealth” on Friday, June 19th.

This webinar covered a variety of topics surrounding telehealth as many brain tumor patients are finding themselves exploring the options of telehealth for their treatment while staying safe during the COVID-19 pandemic.

Watch the full webinar on YouTube

What are the Types of Telehealth Visits?

  • Live Video Conferencing – Using a software like Zoom or Skype you can have a live conversation with members of your medical team.
  • Recorded Visits – Sending previously recorded visits with other medical team members to your primary doctor for review.
  • Remote Patient Monitoring – Typically used for patients needing cardiac, epilepsy, or sleep monitoring while at home.
  • Mobile Health – Using mobile devices to communicate with medical team.

Patients may choose to use one or more of these types of telehealth visits for multiple reasons including;

  • Convenience – Ability for patients to stay home and still see their doctors.
  • Cost – Depending on insurance coverage these visits could save the patient money.
  • Access – Patients may be able to see their team more easily with the help of telehealth.
  • Engagement – Telehealth could improve patients’ engagement and management of chronic conditions.

Dr. Nimish Mohile, Neuro-oncologist at Wilmot Cancer Institute, commented that he can get to know his patients on a more personal level with telehealth because he gets to see a patient’s home and in a comfortable space unlike in a doctor’s office.

There are great advantages to telehealth visits, but there can be some disadvantages as well.

  • Visits – If a patient is seeing their doctor in-person and via telehealth, the number of interactions are increasing meaning the cost may increase as well.
  • Technology – Any barriers or issues from technology could make a telehealth visit unbeneficial.
  • Insurance – Coverage for telehealth visits has been a “gray area”.
  • Physical – A full exam is not possible via telehealth

Preparing For a Telehealth Visit

  • Test Your Equipment – Make sure that both the microphone and camera are working on your laptop, tablet, mobile device.
  • Connect your device to a power source
  • Use wired internet connection when available
  • Close any unnecessary applications open on your device to ensure a clean connection
  • Location – Choose a room in your house/apartment that is well-lit
  • List out any questions and needed information before your visit begins
  • Keep a list of medications, including dosage and frequency, handy for the visit

Once the visit begins, be sure to let your medical team know if there are any issues on your end or theirs with video or audio. A member of your team may ask a patient to walk around the room or make different motions with their face, hands, arms, legs, etc., so be sure your room has enough space to move around safely and in view of the camera.

Some doctors will allow your family or friends to be a part of the visit on their own device if they do not live with you. Check with your team before inviting anyone to join your next visit.

What Can Be Examined With Telehealth?

Not all aspects of a normal visit with a doctor can be accomplished via telehealth, but there is a lot that can be covered.

Neurological Exams

  • Eye movements
  • Facial weakness
  • Strength
  • Walking and coordination

Assessing Cognition

  • Memory
  • Attention
  • Concentration
  • Language

Observation

  • Rashes
  • Thrush
  • Surgical scar
  • Swelling

The following items doctors are unable to assess during a telehealth visit and may require an in-person appointment.

  • Hearing and vision
  • Listening to a patient’s heart and lungs
  • Assessing weakness
  • Checking reflexes
  • Checking for abnormalities in sensation
  • Feeling areas of swelling

For more information and resources about telehealth visits watch the full webinar above or read “What You Need to Know About a Virtual Doctor Visit“.

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