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Optune® Ambassador Program – Patient Story – Gill D.

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Written by Optune® Ambassador Gill D.

Hi, everyone, my name is Gill. I’d like to take this opportunity to thank Novocure for making it possible for me to share my story with you today.

I’m a numbers guy. Statistics get me going. I like to keep track of things–dates, scores, results. When you’ve got a wicked brain cancer, an interest in compiling a thorough set of data can be very challenging. That’s where my faith comes in. Life with cancer was initially scary and sad, but it’s incredible now. Please remember, this is just my story, and your experience may be very different. I’d like to share with you today about some of the things that have helped get me through this cancer journey.

I’ve had good jobs since college, working in the pharmaceutical arena for over two decades. Ironically enough, for the past several years, I have either sold chemotherapy treatments or managed sales reps who sell chemo to oncologists! I encountered Optune years before I was ever diagnosed with glioblastoma (GBM), though I never got the opportunity to sell it. I remember being very interested in it. I love gadgets and technology.

Socially, I’ve always been pretty easygoing and carefree. Up until now, I haven’t faced any major life struggles. My wife Jennifer and I have been married for over two decades, and we have four amazing kids, three boys and a girl–all numbers I’m very pleased with.

Aside from family birthdays and our wedding anniversary, no other important dates or times stand out in my mind. Except for the summer I got cancer. I’d been dealing with a string of increasingly painful headaches that week. I had been chalking them up to sinus pressure headaches from fall allergies, something I’d experienced in the past.

Thursday, though–day four of my headaches, the pain became extremely severe. As I made my way to the bathroom that afternoon, I thought back to when I’d broken my arm a few years earlier. This pain was much worse than that! When it became so intense that my bladder involuntarily emptied onto the floor, I knew something was horribly wrong. I went to the ER.

My heart was ready to jump out of my chest as I was whisked quickly down the hall for a CT scan of my head. The waiting game that ensued was excruciating. The doctor eventually came in to tell me that there was a mass pressing on my brain that was bigger than a golf ball and that he wanted to do an MRI for further analysis. I couldn’t reach my wife by phone at the time. Was I on the verge of death? I had no idea.

When the oncologist came in after the MRI, he said that given the sudden onset of symptoms and the current size of the mass, he suspected that it was a grade 4 brain cancer–a glioblastoma–and that they should operate in two days. Wow! At that point, my mind was racing. I thought, Will I get brain damage from the surgery? and How long do I have to live?

I needed to do some research before I could move forward. I wanted to find the best surgeons in my area and learn about survival rates of patients with GBM. At home, I read on the internet that GBM is the worst and deadliest form of brain cancer, and that only about half of affected patients survive for more than a year. Those were numbers I did not like at all. But then I remembered that using a device on my head had the potential to extend that. I remembered Optune. That was a brilliant glimmer of hope for me! I thought if I could extend my chances of survival, who knew how many more drugs or devices I’d be eligible for in the future?

My family was very loving and supportive through this time. Late one night a few days before my surgery as I lay awake anguishing over my situation, it struck me that statistically my life would likely end very soon. I was suddenly confronted with the reality of my death–and my spiritual afterlife. Panicking, I realized that there were a few things I was still clinging to that didn’t align with my faith, bad habits that would jeopardize my afterlife. I wrested with that. I started to pray and vowed to God that I would be a changed and better man. For me to be able to move forward physically, it was critical that I first get my life in order spiritually. That night, I experienced a wonderful freedom and perfect peace that is with me to this day!

I had surgery a week after they found the mass, and the surgeons were able to remove most of it. My healthcare team and I later discussed solutions to control any further development of the tumor, and that’s when my doctor talked to me about Optune, a wearable, portable FDA-approved treatment for GBM in adult patients.

I did everything I could to try and get Optune. Waiting to hear if it was covered by my insurance drove me nuts, but I worked with the nCompass™ team to identify resources and minimize costs. Shortly thereafter, I was approved and ready to start treatment! Before beginning, I talked to my doctor who said the most common side effect with using Optune was mild to moderate skin irritation.

There was an adjustment period for me as I got used to the device. I needed to start sleeping on a different pillow so I could be more comfortable at night. Sometimes the arrays feel a little warm on my head–but they never get truly hot. At least, that’s the way it’s been for me. Others might experience something different.

My nCompass™ Device Support Specialists tracks my monthly usage rate. It is recommended that Optune be used for at least 75 percent of the time, or 18 hours a day, but I’m pretty competitive with my usage and I’m always trying to improve my usage rate. Using Optune gives me hope and helps me concentrate on the blessings in my life: fitness, holidays, and time with my wife and kids. With permission from my doctor, I am able to participate in some of the athletic activities I love. I’ve got some great pictures of me playing golf with my dad–with Optune sitting on the ground in the background! It is a portable treatment, which is so exciting!

Last year, I actually used Optune on a holy pilgrimage to France. A wonderful group whose main purpose is to serve the ill facilitates a once-a-year trip to Lourdes to visit the Grotto of Massabielle. After clearing it with my doctor, I filled out some forms and wrote a two-page essay on what the experience would mean to me, and I was chose–one of only 150 Americans! Another exciting number–what are the odds? Everything went smoothly during the trip; I even trained others traveling with me on how to apply my arrays. And Lourdes was amazing! I brought a ten-liter canteen with me and filled it at the natural spring where Mother Mary appeared to a local teenage girl in 1858. I’ve been giving out tiny glass bottles of the water ever since to people in need.

There are a lot of ways that Optune makes it easy for me to go about my life while receiving treatment. I’m glad I can still work–I did speak with my doctor after receiving my diagnosis, and we decided I could continue my normal employment and travel schedule while using Optune. Of course, this is just my experience. Yours may be different.

My tumor has been stable since surgery, and I’m so, so grateful for that!

I’ve chosen to use my position to support others. I aim to bring as much peace, hope, and optimism as I can into other cancer patients’ lives–because I understand how very uncertain, stressful, and tumultuous they can be.

Some of my friends and people I meet ask me how I can be so joyous when I have the worst type of brain cancer someone can have! I tell them it’s my new approach to life and God’s gift of perfect peace. Firstly, I no longer take for granted any of my countless blessings. And secondly, I have no anxiety about my health. I am thankful for my church family, who keep me in their prayers, and I only worry about the things I can control, like chemo, Optune, and my ketogenic diet. It probably sounds unbelievable, but I truly feel unbound and free, the happiest I’ve ever been in my life!

Thank you for letting me share my story with you today.

Optune® Ambassador Program – Patient Story – Eric

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Written by Optune® Ambassador Eric C.

My father used to say to me when I was a kid, “Eric, don’t be helpless.” Throughout my life I have often reflected on his words when facing difficulties, but especially since receiving the glioblastoma (GBM) diagnosis. I’ve had my share of upsets, but who hasn’t? Really, I just tend to believe that life is defined more by how one copes than by what one must cope with.

Hi, my name is Eric, and I am here to share my story about how I live my life with Optune. I’d like to thank Novocure for making it possible for me to be a part of this program today.

I have always thought of myself as a lucky guy. I was born to amazing parents and raised in a wonderful midwestern utopia. Everything was like a picture-perfect 1950s TV show, where the dad was calm and strong, and the mom managed the household and the kids with grace and certainty. My dad was not a harsh or strict disciplinarian, but the thought of disappointing him was never—and still is not—acceptable in my psyche. It gets even better! I met the love of my life when I was in junior high, and we have been married many years and are still going strong. She actually was “the girl next door” because she literally lived next door.

Then, in 1979, when I was only 26 years old, my gentle and kind father died due to complications from encephalitis. He was safely on the road to recovery after surgery to relieve the pressure on his brain when he suffered a pulmonary embolism. To this day we have no idea how he contracted the illness. We were all devastated. It was a gigantic loss in my world. No one has had a bigger influence on the way I view life than he did. I continue to consciously make significant decisions based on what I believe he would have done.

It was a hot July day. I was ironing my shirt (yes, it’s true) before heading out the door for the airport—business trip—when my wife stopped me and said, “You look terrible.” “Thanks, dear,” I thought, trying to ignore her worries—I was already uncharacteristically behind schedule and just wanted to get going…but she was insistent and asked me for my car keys in order to take me to the emergency room. At the time she thought I might be having a stroke because my face was distorted, and my speech was slurred. We called our daughter who is a nurse and she told us to get to the hospital right away, too. I gave in to them both and handed over the keys.

Two hours later, when I should have been sitting in a business meeting in another state, I was instead sitting with a doctor who was telling me that I had a large brain tumor that needed to be removed immediately. Needless to say, my wife and I were in shock. Breakfast to brain tumor, and all before lunch. The neurosurgeon put me on steroids for three days in order to reduce the swelling and then off to surgery I went.

I told you I was a lucky guy. The operation went very well, and the doctors were happy, which made me feel better. But I also received the official diagnosis of GBM and was given a slew of information about what to do next and what to expect. I met with a neurologist, a radiologist, an oncologist, you get the gist, and soon began the intense radiation and chemotherapy treatments. This is also when I was introduced to Optune, which I was able to start using about two and a half months after my surgery.

My doctor explained to me that Optune is a wearable, portable, FDA- approved device intended as treatment for adult patients with GBM. He also explained that Optune uses alternating electric fields (TTFields), which may slow or stop cancer cells from dividing. We talked about the most common side effects involving Optune in combination with temozolomide (TMZ), which are low blood platelet count, nausea, constipation, vomiting, fatigue, scalp irritation from device use, headache, seizures, and depression. Despite my technical abilities as a trained engineer, it was a lot of information to digest. So much had happened so fast.

I have to say that I had not been experiencing any obvious symptoms of GBM. I had not had any headaches, no seizures, no tremors. Though, once diagnosed, my wife and I began to recall some subtle changes in my behavior. I am an engineer, and have always been organized, prompt, attentive to detail, and very responsible and logical. Still, during the few weeks prior to that fateful hot summer day, there were some indications that were easy to ignore at the time. I was increasingly nonchalant about paying bills, being on time, and other responsibilities. I used the excuse that I had always been perfectly on top of everything so if I am off a little who cares. After a lifetime of being one way, it was definitely not normal, but easily dismissed.

Then came the day I began using Optune. My wife and daughter were with me when my nCompassTM Device Support Specialist (DSS) came to get me started. nCompass is a support program provided by Novocure. I cannot express enough how wonderful my DSS and the nCompass team have been. I was taught how to arrange the arrays, how to shave my head properly using the razor provided, and how to manage the alarms. It is recommended to use Optune for 75 percent of the time, which equates to 18 hours a day. I use it every day, and while I remove it when I am golfing, or when I do an array change, I regularly exceed the recommended 75 percent monthly usage rate. My wife and I change the arrays every two–three days depending on their condition, my perspiration, and the weather. I still work, with my doctor’s permission. I travel for my job at least two weeks a month. I fly often, and while I should probably allocate more time for security to make things even easier, I have really had no issues.

Optune® Ambassador, Eric C. (left)

My wife has been amazing. I couldn’t be luckier in the woman I chose to marry. She doesn’t just accept my failing short-term memory or diminishing mental organization skills. Instead, she challenges me to do better. In maybe her unintentional way, she provides the incentive to keep “fighting,” whatever that term is supposed to mean. For instance, I once left my wallet at a restaurant and only realized it about 100 miles later—sure, people do this sometimes, but it was absolutely unusual for me. I drove 100 miles back where luckily my wallet was safe and secure, but it was quite an ordeal and, as I said, unlike me. It was a frustrating experience, but it turned out okay in the end. Things like this happen from time to time. Still, I don’t want to be helpless and my wife inspires me to keep strong. We’ve been together for so many years and our partnership attests to the vow in sickness and in health.

I made a decision right from the start that I was going to do what I planned regardless of the GBM diagnosis. My wife and I were planning to move into a new home, which we did. As luck would have it, my two daughters moved back to our town from far-flung parts of the country before my health matters appeared. Our new house is in the middle of the two, and it is a seven-minute walk to either set of grandkids. I plan to retire on schedule, and I am sticking to my original timing. Again, I am lucky to work for a firm that is patient with my health issues. They allow me to set my goals and targets to fit within my revised capabilities and desires. They couldn’t be better in trying to accommodate my situation. I must get regular MRIs, and so far, the results have been good. I feel good, too, and I won’t stop unless I must. I respect numbers and statistics, but where my own life is concerned, I won’t be defined by them.

I’m very happy with the whole Optune experience. I feel lucky to have a good relationship with nCompass. It is a partnership, and I feel very supported.

My career, my family duties, and my active lifestyle have always been integral to who I am as a man. The day you’re diagnosed with GBM it’s difficult not to feel “helpless,” and so many instances through the subsequent months really confirmed it. I carry the words of my dad with me every day, especially in this fight for my health.

I am lucky. I have my family near me, and it is so much like the way it was for me when I was a kid. I am still able to be out in the world. Able to work and lead. Able to travel and participate in life. The seeds that my parents planted continue to grow through me and my children. I suppose it is easy to feel helpless when you are told you have GBM, but I choose a different approach. I thank my dad for preparing me to face life’s challenges head-on.

I thank my wife and children for their love and support. I am not helpless. I am not hopeless.

I thank you all for listening.

Optune® Ambassador Program – Patient Story – Tim

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Written by Optune Ambassador Tim H.

I think probably the most important thing to know about me is that I’m always looking for the good in situations, even if they’re dark. If I can crack a joke, I will.

Hi everyone, my name is Tim. I’d like to take this opportunity to thank Novocure for making it possible for me to share my story with you today.

For fun, I like to watch movies and participate in fitness activities and volunteer work. Before glioblastoma, or GBM, my life consisted of part-time work, spending time with friends, and going to the gym. I went to college for occupational therapy because I’ve had health problems in the past and had experiences with PTs and OTs. I wanted to give that kind of support to somebody else.

A few years ago, something weird happened and messed up my routine. One spring night when I was still in school, I was getting ready to play softball and I collapsed. I’d had minor, febrile seizures as a small child but had never been diagnosed with anything. This was different. This time, I had a grand mal seizure. I woke up in an ambulance after it happened, confused and unable to remember anything. The paramedics told me I’d had a seizure, and all I could say was, “No I didn’t.” At the hospital, imaging showed that I had two brain tumors, cancerous but treatable. Not GBM. I had surgery to remove them.

The most annoying thing about the timing of the seizure and operation was that they came right in the middle of my college finals, and there were a couple of classes that I had to go back and take over. You’d think professors would hear me say, “Sorry, but I was having brain surgery,” and show a little mercy. But, you know…. German finals wait for no man. That is serious stuff.

After I recovered, I went back to school and did my occupational therapy assistant clinicals. I had regular imaging done to make sure that everything was okay, and I didn’t have any seizures or anything.

For a while, there wasn’t even a thought in my head that I could have another tumor. When the time came, it was a complete shock.

I was in the last week of my internship. I’d gone in for routine imaging earlier that month, not expecting to hear anything, of course. Why would I? But one afternoon, I received a call from my doctor’s office requesting to see me. Initially, I didn’t tell my parents or older brother about this because I wanted all of us to relax and celebrate my graduation. That night, I walked across the stage and received my occupational therapy assistant degree.

I had my brother drop me off the next morning for the appointment because I truly wasn’t expecting any bad news. My neuro-oncologist was frustrated. She said, “I’m mad at you, Tim. Why did you come alone?!” And then she told me they’d found another tumor, that we’d need to operate again, and then I would need to wait for the pathology report.

The week after I found out about the new tumor, I had another brain surgery. When I went back to the hospital for the results, I took my mom and dad with me. Truthfully, I was expecting the tumor to be cancerous but treatable because that’s what had happened before. When it was diagnosed as GBM, I was shocked.

I’m very close with my mom; she’s a brilliant lady and used to work as a speech pathologist. She asked all these questions about my life expectancy at the appointment with the neurologist. At home, I told her not to look up GBM on the internet, but she did it anyway—she saw numbers and dates that were very upsetting. My mom ended up retiring early after my diagnosis so she could be there to care for me.

My neuro-oncologist suggested four treatment plans for GBM. I could do 1) just chemo, 2) just radiation, 3) chemo and radiation, or 4) chemo, radiation, and something called Optune. She thought the last plan would be the best for me.

My neuro-oncologist told me that Optune was a wearable, portable, FDA- approved device intended as treatment for GBM in adult patients. She gave me a booklet about it and I looked through it. I thought at first that I’d be able to take the arrays off and put them on quickly, and that it would be a treatment that might only take a year. I was surprised when I learned I’d need to use it 75 percent of the time, which translates to 18 hours a day.

My neuro-oncologist and I talked about the benefits and risks of Optune when used in combination with temozolomide (TMZ). Knowing I’d have to use Optune pretty much 24/7 was a big deal to me. But if it could give me a chance, I wanted to try it.

nCompass™, Novocure’s support program, provided me with an electric shaver so I could get a nice, close shave. Later in my process, I went to a storefront barber and asked the stylist to take my hair all the way down to a fine buzz. She sort of hesitated and said that there were better looks for me, so I ended up explaining why. I needed, and still need, a very short haircut. I go in later myself and shave it down to the skin. The arrays need to be as close as possible to my scalp so that Optune’s low-intensity electric fields (TTFields) can potentially work to slow or stop cancer cells from dividing. The stylist cried a little and gave me the haircut for free.

Once I started using Optune, I did notice some side effects: a little bit of fatigue, tiredness, and some irritation of the scalp. My doctor prescribed some ointment for me to put on my head and told me to give myself a break when that happens. I always have to wash off my scalp in the shower before I put the new arrays on.

Also, I named my Optune. I named her Tina. I don’t know too many Tinas. I didn’t want to name it the same thing as someone I knew. That’s like giving your dog the same name as your friend. I joke all the time about her, and I introduce us by saying, “This is Tina. I’m Tim.” If she’s something that’s mine for life, why not name her? When I’m frustrated, I call her Felicia, so I can say, “Bye, Felicia.” Because it brightens the mood.

Optune is something I had to adapt to. At first, I would forget to grab the backpack when I got up from the couch. I would unplug it every time I moved to another area of the house. But with time, I figured out how to work it into my life. My nCompass Device Support Specialist (DSS) was very helpful, sharing tips on how to do this. Slowly, I started doing all the things I use to do before Optune. With permission from my doctor, I went to the gym with it. I am now able to go out with friends and work out again, which honestly feels great. At the gym, I do a lot of exercises with the backpack on. For the exercises that I need it off my back, I still stay connected to Optune; I just put the bag on the ground next to me.

My family has been really supportive in their own way. My mom has been my champion. My dad and brother are both introverts and I think my dad
especially internalized a lot of his grief. He kept it all in and wouldn’t really speak of it for a while. My mom is easier to talk to. But everyone processes this journey in different ways. Sometimes I have to be proactive in my communication with my family and we have found a system that works for us. I’ve got a good relationship with my neuro-oncologist. I do see a therapist as well, and I’m involved in a support group with other GBM patients.

I’ve gone on vacation with Optune—after clearing the trip with my doctor, of course. We live in the Midwest, so we like to see sun and water. The first time I flew on an airplane while using Optune, my family and I went to St. Augustine, Florida. There were a couple of extra steps I needed to take when flying with Optune. Remember that nCompass, Novocure’s support program, is there to ensure patients have the supplies needed to travel and can ship supplies efficiently, making it easier to prepare for trips. When planning a flight, call the airline ahead of time to prepare them for Optune and ask if any concessions can be made, like priority seating. During vacation, my doctor said I could take it off when I was swimming and put it back on at night as long as I was still banking hours and reaching that 75 percent. It is important that you do not get the device or the arrays wet. If I’m not going to do something in the water, I keep it on.

I’m doing pretty well today, staying active and positive. My latest MRI showed something, and I was pretty concerned at first. The doctors weren’t sure if the tumor was back or if I had a cyst, but it turned out to be something called “treatment affect” basically, it was dead cancer cells. To me, that was really encouraging.

I’m making plans for things that I’d like to do and experience. In the future, I would love to start working in the field of occupational therapy, and I for sure want to travel, especially to Europe.

When people see me using Optune and they make little comments, I try to judge if it’s worth it to go into my spiel. Sometimes people make jokes and though it can be hurtful, I try not to hold it against them because they just don’t know any better. If someone really wants to know about my story and treatment, I’ll take the opportunity to tell them about my experience with Optune. But if somebody well-meaning says to their kid, “Look, he must be listening to music,” I just say, “Yep, I’m listening to future music,” or something like that.

I’m happy to talk to people if they want. I just want to help. I love being able to point other people toward the positive, even in the darkest of times.

Thank you for listening.

Understanding Clinical Trial Eligibility

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The standard of care for brain tumor patients tends to involve a narrow range of options; surgery, chemotherapy, and radiation. And there are only four drugs and one device approved by the FDA to treat brain tumors. Neurosurgeons and neuro-oncologists are skilled at their craft, and they will create a treatment plan for each patient that reflects an understanding of that patient’s needs and goals, as well as the best current techniques for targeting and dosing drugs. 

Still, many patients want to try tools outside the standard toolbox. There is no cure for advanced malignant brain tumors like glioblastoma (GBM). Many brain tumor patients seek out clinical trials for the opportunity to be treated with drugs and approaches that extend or modify the current standard of care. With this disease, hope often takes the form of being willing to try something new. 

Once a patient decides to pursue a clinical trial, many learn that it’s not always so simple. They tell their doctor they want to be on a clinical trial, gather the basic information about their disease, such as what the National Cancer Institute recommends with their cancer details checklist, and work with staff at the clinic where they’re being treated, or perhaps search for clinical trials themselves in places like ClinicalTrials.gov or the tools on the NCI’s Cancer.gov portal. Frequently, even when they think they should be eligible they find out that they’re not. 

Research Questions

The reason patients may have difficulty joining a particular clinical trial is that each trial is designed to answer a particular research question intended to drive research closer to a cure. The challenge is that there is still so much that we don’t know. How do brain tumors start? How do they grow? How do they use the body to feed themselves? How do they shut off the immune system to protect themselves? How do they recover from damage? How do they differ in person to person? How can different drugs and treatment approaches alter their course?

Every clinical trial is designed to shed light on one particular question and provide more insight into how we can fight and beat malignant brain tumors. The entire brain tumor community has a role to play: doctors, patients, families, scientists, nurses, and everyone else who is part of the care process. 

Subject and Principal Investigator

The subject of a clinical trial is the patient. The subject is either receiving the experimental treatment in addition to the standard of care, or a control, who is a patient who is receiving only the standard of care (FDA). The Food and Drug Administration (FDA) regulates clinical trials involving human patients. In cancer clinical trials, the treatment being tested is always in addition to standard care. Patients are never given placebo or denied treatment in the interest of research. 

The principal investigator (PI) is someone who has been trained as both a clinical doctor and a research scientist. Their role is to provide the best care for a disease that anyone knows how to give today, while at the same time finding ways to push forward the state of the art. The PI has seniority over a given clinical trial, is responsible for supervising the care, and the research process. When a patient is treated at an NCI-designated cancer center, their primary neuro-oncologist will frequently be the PI on any clinical trials being administered through that center. 

Trial Eligibility

An example of a research question might be, “will combining a new immunotherapy treatment with Temozolomide improve survival in patients diagnosed with a primary GBM with a particular mutation?”. By focusing on a specific question, PIs can get a better understanding of when and how the treatment being tested will be effective. 

An outcome of this approach is that patients often find they are not eligible for a trial they hope to participate in. Clinical trials have very specific conditions for who is eligible to be in them, and a limited number of spots. Possible conditions include whether one has a primary tumor or a recurrent one, whether one has already had surgery, what treatments one has pursued so far, and what mutations one’s tumor exhibits. 

Investigators call the process of finding patients for a trial accrual. Accrual consists of determining who will be eligible, finding eligible patients, enrolling them, receiving their ongoing informed consent, and completing the treatments being studied. A clinical trial needs to reach a certain accrual in order for its results to be significant, meaning they produce enough data to increase our overall level of understanding. 

All around the country clinical trials are being conducted, testing several kinds of treatments on patients in all kinds of situations. And they all need to accrue patients. If your local research cancer center doesn’t have trial that you are eligible for, ask them to help you find one at another cancer center that you can travel to. You can also reach out to navigators at the NCI who can help you find trials.

Staying Strong as a Caregiver

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

Courtney Benisch, her family, and Team ekSTRONG participate in their first HFTC Metro KC 5K in 2016.

Hearing the diagnosis of brain cancer affects not only the patient immensely, but the family and friends as well. In 2019, 80,000 people will be diagnosed with brain cancer, which means at least 80,000 people will become a caregiver as well. In most cases, the primary caregiver is a spouse, partner, parent, or an adult child. When family is not around, close friends, co-workers, or neighbors may fill this role. The caregiver has a key role in the patient’s care. Good and reliable caregiver support is crucial to the physical and emotional well-being of those living with a brain cancer diagnosis.

Many treatments today are being shifted to the outpatient setting, where the patient does not need to be admitted to the hospital to receive treatment. This means someone is needed to be part of the day-to-day care of the patient. As a result, caregivers have many roles which continuously change as the patient’s needs change during and after cancer treatment.

Two months before my 23rd birthday, I became a caregiver. In March of 2016 my mom was diagnosed with a Glioblastoma. She fought this disease hard and there was never a day she didn’t have a smile on her face. Just nine months later, my mom’s battle ended, but my role of being a caregiver did not stop.

As a caregiver who was younger than most, I went from being a 20-something working three jobs and living with friends to moving back in with my parents, working one job, and becoming a caregiver within a matter of 24 hours. For me, my step-dad, and my brother we knew instantly that this is what we had to do.

There are things as a caregiver you never expect to do and that is by far the hardest part. My mom had severe balance issues due to the location of her tumor, so we always had to help her walk, just like when she helped me learn how to walk. We had to reteach her how to brush her teeth using tips from occupational therapy. When a chemotherapy treatment gave her blood clots, I had to learn how to give her blood thinner injections. Most of all, due to her tumor placement, her memory and cognition were severely affected. We had to learn patience beyond anything I’ve ever managed before. As any caregiver knows, it is hard watching your loved one be consumed by this horrible disease, but know they appreciate everything you do for them.

At my events with Head for the Cure as a Regional Relationship Coordinator I always talk about how as a caregiver, we’re in a club we never chose to be in, but we wouldn’t change it for the world. Caregiving doesn’t have a stop date. I believe once you are one, you never get rid of the title because you dedicated a portion of your life to your loved one when it mattered the most. Processing that takes time and that is part of the healing journey. Everyone handles being a caregiver in different ways. But one of the most important things I learned is to take care of yourself as well.

This is the first piece in the “Staying Strong as a Caregiver” series written by Courtney Benisch

Courtney is a graduate of Missouri State University with a Bachelor’s Degree in Public Relations. She began working for the Head for the Cure Foundation in August 2018 and manages their Midland, Central Texas, North Texas, San Antonio, Houston, and Phoenix 5K events.