After a near-death experience following an unexpected cancer diagnosis, Kathleen Brown reflects on the past 24 years of survivorship to appreciate the hidden gifts of her cancer journey.
I was thirteen years old when I first learned I was dying.
My health care team had exhausted all efforts to stabilize my body over the previous ten days in the ICU, and my family desperately prayed for hope by my bedside. Obviously, this was not how any of us planned to gather over Thanksgiving.
Three months earlier, I was diagnosed with Ewing’s sarcoma. I was a vibrant, self-assured teenager involved in more sporting and extracurricular activities than I could count on both hands. I did not have a care in the world besides the frizz in my hair, who would be attending whatever upcoming social gathering, or how well I performed on the field. I was happy and healthy—at least on the outside. Everything changed on August 28, 1995.
My pediatrician noticed a tiny bump during a routine physical; it turned out to be a grapefruit-sized tumor hiding in my rib cage. All my plans—to attend my friend’s birthday party that weekend, to start eighth grade in a few months, and to play varsity basketball—were cancelled in an instant.
While I lay mystified on a bed in the hospital recovering from surgery, I had an onslaught of visitors. No one was talking about Deanna’s birthday party, instead friends and family were bringing me gifts, encouraging me to get well. “I mean,” I thought, “I guess I like Hootie & The Blowfish, but why do I now own 11 of their CDs?” Looking back, it was probably just as tough for my loved ones to accept my cancer diagnosis as it was for me. As human beings, our instinct is to take care of others and show we care. If only those CDs and get-well cards could have had that kind of impact on my health. As I have learned, people show their love in ways only they know how. Unless you have walked in those heavy shoes, you do not know what it is like, how to cope, or how to help someone else do the same. While my parents carefully considered a treatment plan, I was completely clueless that life as I knew it had blown up while under the knife.
As an athlete and middle sister to two teenage brothers and a six-year-old sister at that time, I could be best described as spirited and strong-willed. At social gatherings you would find me causing trouble under tables or asking guests if they wanted to hear how loud I could scream. I suppose cancer could have been some sort of cosmic payback for all the mischief I had caused. Now, all I wanted to do was use my voice to take me back in time before my diagnosis.
For a confident teenage girl, I recoiled from the pity and attention directed my way. I like gifts as much as the next person, but the only one I truly wanted was to be “normal” and get well.
I distinctly recall my parents sitting next to my post-surgery, inpatient cot on the sixth floor of the children’s hospital when I learned what was going on. Deanna’s party had already taken place. I was going to need a lot of medicine, including stuff called chemotherapy and radiation. But, on the flip side, this would mean a lot of sick days from school! And this was probably a good thing, because I was going to lose my hair. Excuse me, what?
It was a lot to take in.
But I was not alone. While my parents, siblings, and I adjusted to our new reality, we had an abundance of support from family, friends, and our community. We never forgot the compassion shown to us during that time. From meals, visits, school pickups, and gifts, we received a lifetime quota of love thanks to cancer choosing me. I will admit, however, that for a confident teenage girl, I recoiled from the pity and attention directed my way. I like gifts as much as the next person, but the only one I truly wanted was to be “normal” and get well.
Unfortunately there is no get-well guidebook that comes with a cancer diagnosis. There is generally a goal (eliminate cancer), and related treatment plan for the patient, but it seems to be missing fine print about the side effects on the body and mind. We all just learn as we go, and do the best we can.
The best gift I received during this time was from my parents, who did everything in their power to help me get well. Among other roles, my mom became my nurse, manager, punching bag, chauffeur, accountant, and publicist. My dad worked hard to make ends meet and control chaos at home. Fifteen months of treatment probably seemed like a lifetime for my whole family, including my siblings, who must have felt like they were sitting the bench in my big game. But it was one I never wanted to play. I can never repay them for giving up so much of themselves in the process of caring for me. Looking back, I wish the gifts I received could have helped my loved ones get well, too.
Lying in that cot, after my parents delivered the fatal blow about my impending hair loss (and the effects on my self-esteem and date-ability), I blacked out a bit. I came to during a pep talk from my dad, like he was the coach and I was the teammate. Apparently my dad thought this approach would work best for his competitive daughter. “Three things are going to get you through treatment: The hospital has the medicine part covered. Our friends and family will pray for and take care of us. But third, we need you to put up your best fight, because you will beat this. But it will require a positive mindset.” A sports analogy was music to my ears. Game on.
Like all best laid plans, the first part—the treatment itself—was perhaps most lethal.
As is the case with most cancer patients and their loved ones, we felt blindfolded trying to navigate life post-treatment. It took years to realize that our minds and bodies would never be the same again. Cancer forever alters you—and your plans.See Also
Complications from surgery landed me in a state of sepsis when a staph infection went rogue. With all hope lost, and loved ones praying by my bedside, fellow cancer-fighter Joseph Cardinal Bernardin was asked to perform the catholic sacrament “Anointing of the Sick” on me in the ICU. Without any medical explanation, my condition stabilized. It was either sheer determination, divine intervention, or plain old luck that I pulled through that brush with death. There were other plans in store for me.
After fifteen months of treatment, the day finally arrived: December 2, 1996. I received clear scans with no evidence of disease; it should have been a time of celebration, but as is the case with most cancer patients and their loved ones, we felt blindfolded trying to navigate life post-treatment. It took years to realize that our minds and bodies would never be the same again. Cancer forever alters you—and your plans.
In many ways, my cancer diagnosis was the gift: To show my family and me how to truly live in the time we have left. It came with a heavy dose of perspective and gratitude for all of our blessings, including the love of so many wonderful people.
Looking back now, 24 years later, I struggled with my mental and physical well-being. Cancer permeated my life in ways I never thought possible. It has taken many years to heal from treatment, writing my own guidebook to help myself and those I love find the resources we need to take care of ourselves. The goal, as it turns out, is not to get well soon—but to heal as best you can, on your own time.
While there were many gifts received and lessons learned over the past 24 years, none were greater than the ultimate gift—that of life. In many ways, my cancer diagnosis was the gift: To show my family and me how to truly live in the time we have left. It came with a heavy dose of perspective and gratitude for all of our blessings, including the love of so many wonderful people.
I was 36 years old when I realized that we are all dying. Before she passed away from Ewing’s sarcoma earlier this year, the late Fatima Ali of “Top Chef” fame wrote in Bon Appetit, “It’s funny, isn’t it? When we think we have all the time in the world to live, we forget to indulge in the experiences of living. When that choice is yanked away from us, that’s when we scramble to feel.” While we cannot know what life has in store, it is up to each one of us to truly make our time count. I know that I still have more gifts left to give.
A 25-year cancer survivor, Kathleen Brown is the Founder & CEO of buddhi, a wellness registry curated to reduce stress for you and the cancer fighter you love. Prior to this, she raised funds for cancer treatment and research working in corporate development and as a patient ambassador and volunteer for St. Jude Children’s Research Hospital starting in 1995. She lives in the West Loop of Chicago with her sister and dog-ter Penelope and is always dreaming about her next adventure and concert experience.