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Who Takes Care of a Caregiver?

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Written by Lisa, Brains for the Cure Caregiver Ambassador

I was thrown into the role of caregiver when my husband, Jon, was diagnosed with a glioblastoma.  I took on the responsibilities whole-heartedly because had the situation been reversed, I know he would have done the very same for me.  I wanted to be the best care partner possible, but that was hampered because it was impossible to make caregiving routine.  Caring for a cancer patient is complicated and unpredictable. 

I’m not a social worker; I am sharing what I did to help myself during my husband’s nine-month battle with brain cancer.  I hope you find a helpful nugget to help you through this difficult time.

To keep ourselves mentally sane, Jon and I talked a lot, expressing our feelings and fears.  We leaned on each other, wrote in our journals, and shared our concerns with our therapists.  Jon was my emotional rock and vice versa.  We grieved together because we knew of the inevitable, yet there were no secrets nor regrets.

For my peace of mind, I hired an aide to be with Jon while I was at work.  To stay rested I took long naps on the weekends when I knew Jon and I were home safe and sound together.  If a nap meant that I didn’t have time to cook, then I did take out or I warmed a meal that a friend lovingly provided.  When I cooked, I kept our meals simple. 

People want to help.  Take them up on it.  Give a friend a list for the supermarket.  Let your mother-in-law do the laundry.  Our friends researched clinical trials and new GBM treatments.  One offered to take notes when we were meeting with specialists.  An alternative is to record sessions with doctors and let a friend transcribe.  You don’t have to do it all.

Be good to yourself.  Connect with a friend for lunch or get a manicure.  If you need a break from driving, but don’t want to miss a family birthday party, carpool with another guest.  Applying for a receiving handicap parking privileges was was a big help to me.  And don’t sweat the small stuff.  When the house got messy, I looked the other way. 

There are only so many hours in the day.  When I couldn’t find time to get to the gym, I cancelled my membership.  I tried to use my time wisely.  When I wasn’t enjoying the book I was reading, I set it aside and took a bubble bath.  During this difficult time, find ways to forget about cancer.  For me, having friends over to watch football or play games was a wonderful diversion.  Plus, I didn’t have to drive anywhere, and I could enjoy a glass of wine. 

It’s vitally important to take care of yourself.  You can’t be at your best if you are in a constant state of stress and exhaustion.  Figure out what you need to make yourself feel better and take the time to give that to yourself.   Jon encouraged me to relax and recharge, and in turn, I was better able to focus on him, especially when he needed it most.

If you’d like to reach out to Lisa or learn more about her experiences, visit our Caregiver Ambassadors page.

Brains for the Cure Partners with Novocure

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Brains for the Cure (BFTC) is thrilled to announce a new partnership with Novocure, to enhance resources, guidance and peer-to-peer connections for brain tumor patients and survivors.

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 has been enhancing its experience to provide enhanced tools for patients and caregivers advocate, educate and connect with others with like experiences. Our new patient experience, complete in 2020, focuses on supporting a new navigation that is tailored to the journey that is most helpful to the patient.

Novocure was founded to provide patients with a new cancer treatment based on using alternating electric fields, when applied at specific frequencies, can disrupt cancer cell division and cause cancer cell death. This innovative treatment, Tumor Treating Fields, is a completely different approach to cancer therapy.

Novocure’s therapy, Optune, is a wearable, portable, FDA-approved treatment for glioblastoma that creates Tumor Treating Fields which interfere with glioblastoma cell division that may destroy them.

Together, BFTC and Novocure are committed to supporting brain tumor patients throughout their entire journey with brain tumors. They remain at the heart of why both organizations exist. The Brains for the Cure Patient Perspective Initiative is powered by a grant from Novocure. 

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

Barrow Neurological Institute Unveils Second Opinion Tool for Physicians

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COVID-19 has created an additional challenge for patients and clinicians who are seeking a second opinion for their brain tumor diagnosis and treatment because of travel and safety concerns. With all of these obstacles, it’s still a good idea to get a second opinion.

Why receive a second opinion? As a patient or a caregiver, you need to make sure that you feel comfortable with your team of doctors and your treatment plan. A second opinion can help confirm the diagnosis, check to make sure the diagnosis is correct, and even open up the opportunities for a different treatment plan for a brain tumor, especially if you are interested in the potential of enrolling in a clinical trial.

Barrow Neurological Institute has created an online second opinion portal that is available to physicians across the country to submit imaging and reports to receive a second opinion directly. This is a free option, and there is no expectation that the patient would need to receive treatment at Barrow.

Learn more about their portal.

Are you curious how neuro oncologists think about second opinions?

NCI-Connect: Clinical Trials Update

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As a partner of NCI-Connect, Brains for the Cure provides an update on three active trials at the National Cancer Institute. Any decision regarding treatment should be communicated with a patient’s treatment team first. Patients will need a referral from their treating doctor to be considered for one of these trials.

Marizomib for Recurrent Low-Grade and Anaplastic Supratentorial, Infratentorial, and Spinal Cord Ependymoma

Ependymomas are rare primary brain tumors arising from radial glial stem cells. They comprise 5.2% of all pediatric primary brain tumors and 1.9% of all adult primary brain tumors.

The objective of this study is to evaluate the efficacy of treatment with marizomib in RELA-fusion recurrent ependymoma and non RELA-fusion recurrent ependymoma as measured by progression-free survival at 6 months (PFS6).

Learn more here.

Nivolumab in Patients With IDH-Mutant Gliomas With and Without Hypermutator Phenotype

Glioma is the most common malignant brain tumor. Genes coding for isocitrate dehydrogenases 1and 2 (IDH1 and IDH2), metabolic enzymes, are frequently mutated in gliomas, particularly lower-grade gliomas (LGGs). IDH1/2 mutation causes a unique tumor biology, including the accumulation of 2-hydroxyglutarate (2-HG), an oncometabolite, which in turn causes genomic hypermethylation and tumorigenesis.

The objective of this study is to determine the 6-month progression free survival rate in IDH-mutant gliomas patients with and without HMP in responses to nivolumab treatment.

Learn more here.

Immune Checkpoint Inhibitor Nivolumab in People With Select Rare CNS Cancers

There are more than 130 identified primary tumors of the central nervous system (CNS). Most have an annual incidence of less than 1000 in the United States.

The objective of this study is to determine the efficacy of nivolumab in a variety of recurrent, refractory primary central nervous system tumors as measured by disease control rate (confirmed CR/PR or durable SD for at least 6 months).

Learn more here.

A Caregiver Leaned on Religion to Cope With His Wife’s Diagnosis

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Being diagnosed with brain cancer, or cancer of any kind, can be a life changing and defining moment. It is so often associated with fear, worry, anxiety, and maybe even helplessness; filled with the desire to find answers and a sense of hope.

My wife Allie was diagnosed with a brain tumor at the age of 24, one year into our marriage and the beginning of us planning for our future filled with promise. I found myself looking for someone or something to turn to in these moments of deep despair. For both of us, we chose to lean on our faith in God, and strived to make Him that source of peace, comfort, hope and strength when there seemed to be little to come by. We both made the very personal decision that when faced with this very tall obstacle that was her cancer, we would run to God as our ultimate source of comfort and protection.

Allie had been having various symptoms for nearly a year prior to that first dreaded MRI on October 13th, 2016 that showed the mass on her brain. I had actually returned to work that day after completion of her MRI thinking ‘it must not be too serious, or they would have admitted her.’ It wasn’t a short hour later that Allie called me at work saying her primary care doctor wanted to see her immediately. That was the moment that it all began to sink in, that I really wasn’t in control here, and this may not be the news we wanted. Sitting in the physician’s office and hearing the words that your wife has a brain tumor almost felt like an out of body experience. Initially numb from the weight of it all, it was later that evening and into the next day that the fear and anger set in. This was a mere 2 weeks prior to our first wedding anniversary, which only added to the emotions of the situation.

It was in this place, this moment where I felt stuck, helpless, and scared; not knowing what the next few weeks would hold as we approached surgery, that I broke down into prayer. Not only was I seeking comfort, but also answers. Answers that I knew her amazing medical team couldn’t provide. I would be lying if I said I didn’t ask the common “why us” question. While I understand God would never purposefully give us an obstacle like this to negotiate, I do think it is normal and very human to ask the “why” question. Even though I am not convinced we will ever really know the answer. In the moment, though, I don’t believe we should dwell in that thought, I think it is good to ask those questions. It grounds us; it humbles us; and it makes it known that we are in need of a comfort that I believe only God can provide. It was in this place, this vulnerable and lonely moment, that I felt the overwhelming sense of peace and comfort in which I was searching. The reassurance, that while I wasn’t in control, He was. As weird as it may sound to some, it was just a few days prior to surgery, sitting on our living room couch, that I felt the fruit of those prayers. God reassuring me and providing me with a comfort and confidence that my wife was going to be okay! 

As a caregiver there is much being required of you physically, mentally, and emotionally. Whether it be after a diagnosis, after a surgery, or during follow up scans there is someone relying on you to be strong, to be supportive, and to be always ready to assist. It is a hard task; it is a task that I personally didn’t always know I could succeed at. Currently, Allie has had over 20 MRI’s, a cumulative total of 40 days of radiation, and is completing chemo. All of which is naturally associated with a lot of time to stress, worry, and cry which clashes with the feelings of needing to be strong, comforting, and courageous. It is God who has been my outlet, my support. Even though I have felt the gravity of the stress and the worry over the years, it is my faith that has made a seemingly impossible situation possible. And through it all I experienced the largest spiritual and personal growth of my life. I came to understand that caring for someone you love could actually be a fulfilling experience and can make your love for them even greater.

As a caregiver, patient or loved one, there are many avenues to explore when finding a way to cope with the consuming emotions that you will face going through this journey.

To learn more about Mitch and other caregivers, visit our Caregiver Ambassador page.