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Staying Strong as a Caregiver: Navigating Work and Grief in a Pandemic

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

This year has been nothing but a roller coaster, and as a caregiver, I cannot even imagine what it is like watching your loved one who is battling brain cancer go through it as well. The pandemic has not only affected treatments, surgeries, and general doctor’s appointments, but it has also added another layer of stress for your loved one and the rest of your family.

Supporting Brain Tumor Patients in a Pandemic

Now more than ever, patients and caregivers may be turning to the internet for information about a brain tumor diagnosis. With limited in-person interaction at hospitals and the increase in telehealth appointments, it can all be a bit overwhelming knowing where to turn for help. Talking with your doctors and nurses is incredibly important but using a website like Brains for the Cure could be a bit more comforting with its inclusion of stories from patients, caregivers, and doctors.

Changes at Work

One thing it has affected me personally and professionally is our amazing 5K events. When I started working for the foundation back in 2018, I had already had two years of supporting Head for the Cure under my belt as a participant. However, being able to help others even more by planning our incredible 5K events made it even more special. Going into 2020 I was excited to see the amazing survivors, strong caregivers, and supporters in the various cities I work with. Everyone has such a special place in my heart and not being able to hug them all stinks!

When COVID-19 hit, my world came to a halt, as it did the rest of the world. Personally, I have been working remotely for over a year now so being at home 24/7 wasn’t something new to me. However, it was the heavy news cycle, not being able to go out and get some fresh air when needed, and general blanket of anxiety that set in. At Head for the Cure, we now had to figure out how to hold our monumental 5K events and fundraisers in a way we have never done before. It has been hard work, but so inspiring at the same time.

Moving our physical events to online events has been a whirlwind experience because we want to make sure all of our aspects of our physical 5K events for every single city is shown online. The biggest thing for me about the transition was “how are we going to honor survivors and caregivers still?” I think we have figured out not only how to do both of those things, and even more now. I’m so thankful we get to honor and celebrate everyone in such a different way.

Honoring My Mom Virtually

Courtney, friends, and family honoring her mom’s memory with Team ekSTRONG at the Head for the Cure – Metro KC 5K in 2018.

Now that my hometown event is coming up in August, it has me thinking how I want to honor my mom in our virtual event. There are so many options! If you haven’t had the chance to watch one of our virtual events, you can find them here. You get to see so many more aspects of what Head for the Cure does on “race day” and I am excited to get brainstorming with my family. Here are some of our ideas so far:

  • Record a testimonial with my brother and stepdad via Zoom
  • Ask family and friends to send me their testimonials about why they support Head for the Cure
  • Create a short video from photos of past events to include in the Wall of Hope slideshow
  • Send in my mom’s favorite quote or memory of her for the Celebration of Life video

How will you get involved in our virtual events? Learn more at headforthecure.org.

Jenguin’s Journey – Facing a Different Front: Winning the First Battle & Defeating the Enemy

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Written by Jenny Williams (aka ‘Jenguin’) – Head for the Cure Ambassador

2020 has quickly become a year we will never forget. Months of quarantine have left us eager to get outside, and we fondly remember large gatherings from previous years. In the brain tumor community, it’s been a little disappointing that our usual events and 5Ks have turned virtual this year. I’ve been involved with the Head for the Cure Chicago 5K since 2015, which has directly benefitted my medical center and doctor every year since.

And in June of last year, I decided to travel over five hours to meet up with my siblings in St. Louis. We walked the 5K there to honor our dad who passed away from the same type of tumor that I’m currently fighting. It was a spectacular day despite the rain, and I have a feeling it will continue to be a tradition for me and my sisters.

It seemed only fitting that on the one-year mark of that day, I would have a follow-up MRI. Wearing the gray survivor shirt from that race and a cheery penguin mask, I bravely headed into the hospital, forced to leave my boyfriend behind at the entrance. It had been two months since I started a new course of chemotherapy, and I tried to imagine the damage it dealt to the tumor in my head as I navigated my way downstairs to the highly magnetic area marked with warning signs and into the noisy MRI machine.

Afterwards, we headed home to prepare for a video visit with my doctor to find out the results. Although she was starting to see patients in person again, I was not one of them. I was considered high risk, with depleted blood counts from the previous week to prove it. We kept our fingers crossed until the doctor appeared on my computer screen with the news we were waiting for. Comparing before and after pictures of my brain over video, we saw that the tumor was clearly wounded from this first battle. This meant the only thing standing in between me and another round of chemo was a low neutrophil (white blood cell) count, which I was having re-checked in my weekly counts the following day.

A couple vials of blood and a phone call revealed that my neutrophils were better than ever—doubling in a matter of seven days. I knew this was excellent news, but it also meant it was time for another round of cancer-killing toxins. I can’t say I’m looking forward to receiving this ammunition in the mail (and in my body), but I am looking forward to delivering another fatal eight-week blow to the unwelcome enemy in my head.

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“.

Jenguin’s Journey – Facing a Different Front: Eating for Battle

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Written by Jenny Williams (aka ‘Jenguin’) – Head for the Cure Ambassador

For us brain cancer patients, it’s enough to be told to start chemotherapy to combat a growing tumor. But on top of it all, while in treatment, I’m forced to change my diet because of one of the chemo drugs. Since I’ve done this treatment before, I’ve already done my homework.

Procarbazine, the P in PCV chemotherapy, is what’s called a MAOI, or monoamine oxidase inhibitor. These types of drugs hinder the ability of a couple enzymes that help us break down an amino acid called tyramine. And if this amino acid builds up too much in our bodies, it can raise blood pressure dangerously high, which could lead to stroke. I have enough going on in my brain as it is, so if I have to say goodbye to eating some of my favorite foods for the time being, so be it.

Since being diagnosed, I’ve tried a few different meal plans. Initially, I cut out meat, then slowly introduced it back in, trying to limit red meat. Later on, I discovered juicing and all the benefits of flooding my system with the nutrients it brings. It’s like giving ammo to my little immune warriors to deliver a fatal blow to the tumor.

I started dating my boyfriend five years ago, when I first did PCV. My restricted diet made our dates at restaurants fairly interesting. My options were limited, and it seemed everything I felt like eating had one of these tyramine-rich ingredients in it:

  • Soy sauce (teriyaki sauce included)
  • Aged cheeses (including cheddar, swiss, provolone)
  • Fermented foods (especially miso, tofu and pretty much any Korean cuisine)

Not to mention the fact that my boyfriend is Korean, and we both enjoy Asian cuisine. The weekend before I started Procarbazine this year, we went on a culinary splurge. Saturday’s dinner was from our favorite ramen restaurant, and Sunday’s was soondubu, a delicious spicy tofu soup from Korea. Thankfully these foods were available for takeout during the pandemic.

Until these diet restrictions are lifted for the next year (or longer), I can still enjoy some other favorites. As a Chicagoan, I love my hometown deep dish pizza, which thankfully uses mozzarella (a fresh cheese). There’s also crab legs for special occasions, and as a special treat, I’m allowed my ultimate vice: ice cream (and frozen custard).

When telling some of my friends about my diet restrictions, they tell me they could not bear to give up some of those things, especially wine and beer, which I have been known to enjoy a glass on very special occasions. But for me, the temporary limitations are worth not risking a stroke, and definitely worth winning this ongoing battle with cancer.

Jenguin’s Journey – Facing a Different Front: Dodging Side Effects During Battle

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Written by Jenny Williams (aka ‘Jenguin’) – Head for the Cure Ambassador

Watching TV, you’re bound to see one of those commercials for a pharmaceutical drug where they list out the side effects, and somewhere in that fast blurb of side effects, you might overhear the words “…which is serious and may result in death.” You might think, “Why would anyone take that medication?!” I think about that sometimes. I’m taking a couple of drugs that come with some pretty awful side effects, but sometimes it’s worth it when the disease you’re dealing with could take your life.

Jenny’s Side Effects

I’ve been tired. I’ve been queasy. I now take an anti-nausea medication to help me cope with the queasiness, but that comes with its own side effects that I have to manage with over-the-counter laxatives, which also might have some side effects. It seems to be a never-ending loop of ailments, and that in itself is exhausting.

This week, I received an antacid to help with some reflux I had been experiencing. After my first dose and some dinner, I felt hot and incredibly itchy. Looking down at my legs, I noticed some red blotches. My entire body had turned into a minefield of hot spots, tempting me to itch them. It soon became clear that I was having an allergic reaction, and the thought of going to the emergency room during a pandemic drove me into a state of panic.

I did whatever I could to keep the explosive itching at bay while staying home. The next day was filled with around-the-clock Benadryl, phone calls with nurses and rest. 48 hours after it all began, I was itch-free and glad to have dodged a visit to the ER.

Next Blood Check

Life as usual continued with my weekly blood check at the local somewhat-empty hospital. I recounted my itchy experience with the oncologist over the phone when he called me with my lab test results. Despite my unfortunate reaction to the antacid, my blood counts remained stable. A bit on the low end, but nothing to warrant any action. I happily took this small victory in what seems to be a long battle.