By Max Merget

That one moment, that one event that will change who you are started when I was three but never came to mind until I was 17 years old. My name is Max and I have been a brain cancer patient since I was a toddler. People always ask, “How did you know you had a brain tumor and what was it like?” The answer is simple if you have seen it first-hand. 

My family and some friends were enjoying a weekend in Canada at our cottage. I was only a little boy when my right leg started to drag on the ground. My right arm and hand clenched up, making it look as if I was some dinosaur with a short and useless arm. My speech patterns started to get distorted, making it hard for my parents to understand me. That is when you know you are having brain issues. 

My Mom scheduled an appointment with our family doctor that Monday. My pediatrician knew something was wrong and recommended we get to the University of Michigan’s Mott Children’s Hospital for further testing. Doctors there ran tests and an MRI of my brain, which exposed a massive cancerous brain tumor. The doctors were shocked when they looked at my images. They were confused to see my minor imperfections considering that my cancer took up two thirds of my head. Surgery was performed the next day. All of this was just the beginning play in the cards that I was dealt. 

My cancer came back at age four and again at seven. Throughout my life, I’ve had brain surgery three times, radiation therapy twice, and chemotherapy once. I do not have much memory from the early years of my life. I’ve had so many horrific experiences in my first 10 years of life that my brain decided to block them out. My only memories of my childhood comes from pictures, home videos, and the stories my parents tell me every once and a while. The memories come across with two perspectives. I look to first understand what happened to me. I can’t help myself to then understand my parents’ decisions and sacrifices they had to make.

It was the beginning of my senior year of high school and life was treating me well. I was doing well in school and got accepted to Grand Valley State University. My 10-year mile marker for being cancer free was coming up that year. I was told after 10 years of being cancer free, the chances of the cancer returning were slim. Every year, I would go in for MRI brain scans and for checkups. I always felt that the MRIs were pointless as I was feeling great, ready to conquer the world. I had cancer when I was a child and now I am in remission, was my thought. But then I was called in for an off-schedule MRI. Apparently, there was some scar tissue that my neurosurgeon saw and just to make sure, they wanted another scan. You go in for the scan and then you come back the next day and meet with the doctors to review the scans. The day to review the scans was my 10-year mile marker anniversary.

I will never forget this day. My appointment was at 11 am. My parents and I knew something was up, but I was staying optimistic. The car ride to Mott Hospital was quiet with some unanswered questions that would be answered soon enough. It was if I was driving only to get bad news. If my cancer came back, would I have to have brain surgery for a fourth time? How far would my treatment set me back? Sitting in the waiting room was never so painful and I was very eager for the nurse to call my name. Finally, she did, and I hopped out of my seat. My neurosurgeon has spina bifida and uses a Segway. It is a little hard for her to get around and we are usually in the office before she arrives, except for this appointment. I was the first to walk in with my mom and dad following. The meeting room was small with a sanitary smell. I was being quiet while my parents made small talk with my neurosurgeon and my oncologist. I was standing in the back by an open chair waiting for the news. My neurosurgeon spun around in her own chair and looked right at me. With a very powerful and determined voice she said, “Max, It’s back. Your brain cancer is back.”

I dropped my jaw and fell into the chair as if my legs fell out from under me. Thoughts rushed through my mind quickly without any resolve. Having the idea that I’d never have to go through this again and all the time I had put into functioning normally had just been an illusion. I learned that my cancer is very rare and that it can come back whenever it wants to. When I was three, I was one out of thirteen people in the country to be diagnosed. Also, my cancer is normally found in the spine. For some reason, mine is located in the frontal lobe of my brain. This was the first time that I actually knew what I had to undertake. Throughout the years, my parents never brought up this topic. It was difficult to handle my emotions and to keep my composure. As I was sitting in the back thinking about my life and how it was going to change, my neurosurgeon was going through my different options of removing the cancer. I had three options to choose from: surgery, radiation, and chemotherapy. Ultimately I was going to side with whatever my neurosurgeon thought. She has been with me since I was three and I trust every decision she makes. 

For 10 years of my life, I had the privilege to walk out of that hospital with a smile on my face. Now I was leaving with more questions than I had coming in. Words cannot explain the feeling of having an alien-like substance just eating away at your brain. The car ride home was extremely silent. All of the memories and emotions of my childhood came rushing through my parents’ minds. I could see from the back seat a single tear run down my mom’s face. Seeing that one tear only emphasized the hardship that I was yet again going to live through. Once I got back home, I went upstairs to my room and slammed the door in anger that my cancer was out of my hands to control. I had to accept my situation and get back to living my life. I took a shower, then regrouped so I could continue my day. I even went to work washing dishes at a pizza place. Going back to your normal life is the best mental treatment.

After a long seven-hour shift, I walked out to my car to leave when I noticed a lot of notifications on my phone. The word got out through my parents telling their friends about my news. I was trending on Twitter and everyone in my world had contacted me via Facebook, email, text, and calls. Then it came to me, maxyourbrian.org. I started my own foundation for cancer research. I would have fundraiser events to educate the public about what cancer patients have to go through and the importance of funding the research done at Michigan Medicine. The funds supported the research time in the labs and paid for equipment. I raised $43,000 to fund my neurosurgeon’s research. 

My cancer will never succeed in bringing me down, but it will always be a part of my life. Once someone asked me, “what would life be like without cancer?” I had to think about it for a minute and I simply replied, “I don’t know who I’d be without cancer, but I love who I am with it.”

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About the Author

We are not here to live, but to thrive. Max Merget finds himself to be very fortunate to have been able to bounce back and survive brain cancer for the fifth reoccurrence. The MYB team will help raise awareness and money so that brain cancer patients can have a healthier life.

By Andrea Gilats

It was August, a month past my seventy-fifth birthday and time for my annual mammogram. Though I have had annual mammograms for twenty-five years, I always fear them because I feel intensely anxious while awaiting the results. During the day or two following the procedure, I keep an ear tuned to my phone in case the dreaded call comes, and after that, I continue to feel on edge until the all-clear email arrives. Twice in the past two decades I have been sent for ultrasound examinations of my right breast, but both were in response to something my doctors felt, rather than something seen on a mammogram. Neither exam showed an irregularity, but each helped me feel luckier than I felt before I was tested. I cannot help but compare the sensation to the high one feels when an excruciating toothache, perhaps caused by an infected wisdom tooth, is relieved by a good dentist.

 Seventy-five marks the age at which some health experts suggest that women who are at average risk of breast cancer may no longer benefit from mammograms. I turned to Google, that indiscriminate portal of sources, and learned that the American Cancer Society says that mammogram screenings “should continue as long as a woman is in good health and is expected to live at least ten more years.” On the other hand, the United States Preventative Services Task Force, which offers health care providers, governmental entities, and members of the public guidance on whether or not to undergo a variety of procedures and tests, says that because of insufficient evidence, it cannot determine the balance of benefits and harms associated with mammography in women seventy-five and older. In other words, they would have no ill effect on health no matter how much longer the affected women lived.

 I did not have a mammogram during the inaugural year of the coronavirus pandemic, but in 2021, after being vaccinated against covid 19, I decided, albeit halfheartedly, to have one. All might have been well except that my discomfort with mammograms was not the only diagnostic decision I faced as I aged. Several years ago, my primary care doctor asked me if I would like a free CT (computerized tomography) scan of my lungs because I am a former smoker. The idea was to “catch something” in its asymptomatic early stages. Rather than being strictly diagnostic, it was precautionary. Rather than being preventive, it was—how best to characterize this?— informational, like a baseline mammogram.

 It took me no time to answer in the negative. I did not want to know if I had a lung tumor then, and I do not want to know now unless absolutely necessary. What if I had had that scan and been diagnosed with an untreatable cancer? How would it have felt to live with that diagnosis knowing that I was helpless against it, as my late husband did? My remaining time on Earth would have been a death watch, whether for a few months or a few years. Living with such knowledge is also a death knell to optimism: it crushes well-being and kills the spirit even as the body continues to function. As it turns out, in old age, ignorance can sometimes be bliss.

 Before I quit smoking, I was so afraid of having a chest x-ray or CT scan of my lungs that when I did need to visit a doctor, I scrupulously hid the fact that I smoked, including lying on questionnaires. This meant that for the first sixty-one years of my life, I never underwent an x- ray or scan of my lungs. That run ended in 2006 when what turned out to be an emphysema exacerbation landed me in the emergency room of United Hospital, St. Paul, Minnesota’s largest. There I suffered through a botched CT scan, which was followed by a successful PET (positron emission tomography) scan that revealed emphysema, but no tumors. I have not had an x-ray or scan of my lungs since, and never will again unless I am convinced that there is a compelling reason why an image of my lungs would be of consequential benefit to me.

 Truth be told, I was so afraid of invasive examinations and uncomfortable tests that I did not have regular physical exams until I was almost fifty years old. My doctor-free life came to an end one morning in the spring of 1995, when I awakened feeling so dizzy that I could not sit up. Never before and never since has my head whirled so violently for so long without letting up. In an amazing coincidence of true love, my husband awoke the same morning with his left ankle so swollen that he could not step into his work boots. Though each step burned, he could still walk, so he took charge. After feeding me some Advil, he called my insurance provider’s clinic, told them my tale of dizzy woe, and made an appointment for me at two o’clock that afternoon. After that, he called his healthcare clinic, which was then known simply as the “industrial clinic.” Come right away, he was told, so he got dressed and off he went in his moccasins.

 When he returned an hour and a half later, I was still in bed, unable to move my head. Thankfully, he had received a steroid injection to calm the swelling caused by a “mild sprain,” and he was already feeling better. He gave me more Advil, took me to the bathroom, held my head as I emptied my bowels, steadied me as I brushed my teeth, and delivered me back into bed, where I rested for another hour or so. When it was time to leave for my doctor’s appointment, he dressed me, bundled me into my jacket, walked me to the car, and secured my seat belt around me.

 At the clinic, a female doctor with an eastern European accent listened to my heart and took my blood pressure: 210 over 110. Heaven help me! With a dangerous bang, I had arrived in middle age. Luckily, by the time I entered the doctor’s office, my headache was subsiding somewhat, which allowed me to open my awareness to the enormous fish I would now have to fry. There and then, I was given medication to reduce my blood pressure, along with two prescriptions for hypertension medications that I would take for the rest of my life. I had avoided the common symptoms of hypertension for months, even years, by attributing my frequent headaches, heart palpitations, and relentless anxiety to work-related stress. Now, all of a sudden, I knew that stress alone could not account for the turmoil inside my body.

 Within two weeks, I was free of all these discomforts, but out of that scare had come new obligations. Just in time for my fiftieth birthday, I now had a duty to see my female doctor every three months in order to monitor my blood pressure, thereby averting a stroke, and, at her insistent recommendation, to undergo the gynecological examinations that would help me avoid a cornucopia of women’s cancers as I aged. In one afternoon, I became educated. I am neither ashamed nor proud of my ignorance; I offer my lesson here because it is one of the most salient truths about my health journey into old age: that it is a voyage that begins sooner and lasts longer than I could have imagined.

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About the Author

Andrea Gilats, Ph.D., is a writer, educator, and former yoga teacher who is the author of two books published by the University of Minnesota Press, Radical Endurance: Growing Old in an Age of Longevity (2024), and After Effects: A Memoir of Complicated Grief (2022), which won an Honorable Mention from the Forward Indies 2023 Book Awards. She is also the author of Restoring Flexibility: A Yoga-Based Practice to Increase Mobility at Any Age, published by Ulysses Press. Learn more about her at andreagilats.com.