This week’s blog come from Rebekah Howerton, a single mom to a 13-year-old son, who has recently endured three radical brain surgeries and brain radiation while living with MBC over the last 5 years. She is member of Emory’s patient advocate program. Here she shares her view of life.
Edited by Barbara Bigelow
Cancer is a Ride, Not a Journey
By Rebekah Howerton
While the majority of definitions of medicine relate to drugs and treatments, I think all patients have their own version of what brings them through the worst of times that does not come in the form of a prescription. Medicine for the soul that doctors cannot prescribe. For some, medicine is yoga, running, reading. For me, it is movement and music. Movement in the form of traveling around the world as I have been able to do all throughout my five years of living with MBC. Music as medicine in the form of growing up in the church choir, taking piano lessons my entire childhood and creating gangster rap playlists to blast through surgery and radiation. Quarantine is also helping me to learn guitar and music changes my mental perspective on a daily basis. It also means that I live with intention.
In the most basic sense, a journey is planned. Calculated. You scour the web for the best deals and destinations before you pack your bags. I am a self-prescribed snobby globetrotter. Nothing brings me greater joy than mapping out a new adventure around the world. Whether its navigating the labyrinth of Japan’s rail system on route to Mt. Fuji, singing along to the sounds of music on the streets of Salzburg, floating along the canals of Copenhagen, or practicing basic white girl yoga on top of the Marina Bay Sands overlooking a Singapore sunrise – I will always embark on a journey with joy. Movement is my medicine and it means that I am very much alive.
I also know I am going on a journey by foolishly heading to Costco on a Saturday morning or searching round and round in the airport parking lot for my car. These too are planned, calculated, strategic. Intentional.
Living with MBC is anything but intentional. Getting thrown into a diagnosis is like being dropped headfirst into a moving roller coaster with no end in sight. You are alone in the front seat, terrified of heights and the coaster starts click-click-clicking up the rails. This ride is called cancer and you are now a member of the worst club with the best people. Buckle up. Just before you plunge downhill, your new oncologist drops into the seat next to you with phrases like, “this ride could shorten your lifespan” and you hurriedly add more doctors in this first descent. A surgical oncologist to remove the initial malignancy, a plastic surgeon to restore the breast you once nursed your son with. A radiation oncologist to beam lasers through your brain, possibly a pulmonologist if you are lucky enough to have lung metastases. An orthopedic oncologist to replace your cancer-fractured hip. You do not have the foresight to see that a neurosurgeon will jump on your crowded cancer coaster in the beginning of year four. Is your life its own Grey's Anatomy episode? Maybe. Your new doctor-patient relationships will consist of the constant tightrope of treatment, the push and pull for your quality of life. You will have frank discussions about your will to live and the currency of time. You do not even realize how to grieve your former life. Pro tip: take the time to mourn who you once were, and then move on.
Sometimes your friends and family join you on this unpredictable ride, jumping on during turbulent times. Surgeries, treatments, debilitating loss. Sometimes it is too much for them to handle. Your thoughts echo and reverberate in the new isolation of your daily cancer life. Your torment relents only when you meet new souls in your cancer club – what is unspoken speaks volumes and often only requires a look. You lose friends to this unrelenting disease as you grapple with your own mortality on a daily basis.
Unlike a journey, which is planned, you do not know when this ride will end. Many souls go unexpectedly before you when their ride sprouts wings and carries them away from the physical pain. Maybe it is when you have been through too many loops and life turns upside down with no seat belt – this is what living through 3 brain surgeries can feel like. When your eyes close as the blinding lights of the OR turn on overhead and an equal mix of adrenaline and general anesthesia kicks in, not knowing if you will wake up while your eyes blur with tears over the sight of your son standing alongside the hospital bed. A ride can easily become a freefall of physical failure. Lungs give out by filling up with fluid, bones fracture from malignancies, livers stop functioning, brains seize. This is only what cancer does physically – cellular chaos. Mentally it is much more difficult to treat, a constant torment echoing around in your mind. Sometimes I envision myself as a hockey goalie and check myself before I wreck myself. But make no mistake, it is my mind and my heart that have pulled me through years of physical failures. Purpose pulls me through the pain, and I continue my ride.
Still, despite this, I find medicine in movement and music. I continue to live my life with intention as much as possible while on a whirling ride I cannot get off.
Cling to the medicine that sets your soul on fire.