When a doctor looks you in the eye and tells you a malignant tumor is growing in your brain, your world instantly changes.
That’s exactly what happened to me. And my world today is almost unrecognizable from that day in early 2012. They predicted I would probably not make it past eighteen months. But I’ve made it past October 2013 and, although there was a point earlier this year when I thought things couldn’t get any worse, the reality of terminal brain cancer is reminding me the battle isn’t over.After a lifetime’s worth of radiation treatments, and oral chemotherapy to go along with it, the tumor remained resistant. Through sheer determination, and a little bit of luck, I found a surgeon to remove it using intra-operative brain mapping. Along the way, I also adopted the Ketogenic Diet to starve the cancer cells and boost my immunotherapy. Both strategies seemed to be working, until my old symptoms started to make a comeback earlier this year.
Problems with balance and loss of strength could be due to inflammation and the effects of radiation, ash residue in my brain. My recent MRI showed no additional growth but the doctor said the tumor area looked “suspicious.” Honestly, I think the tumor specialists don’t always know what they’re seeing. They certainly don’t always agree about what they do see. I understand they are just human beings, but not having solid answers is frustrating to the patient. It only adds to the emotion and the confusion of the continuous roller coaster ride that I, and my family, have been on for the past three years.
You could say I’m on the “watch and wait plan.” For now, we’ll continue with chemotherapy and infusions; most of them have terrible side effects and some new therapies are almost too impractical to even bother with. If the MRI shows there’s more tumor growth, I hope the results are clearer. Maybe I’ll find out in May, after my next scheduled scan.
In my upcoming book, Defy and Conquer, I talk about the journey of brain cancer and discuss the traditional and adjuvant therapies I’ve used, including the Ketogenic Diet, which really does make me feel physically better, in spite of the fact that it was difficult to get used to, at first. I think many other patients, as well as caregivers and family members, may learn something from my journey because I discuss the important aspects with honesty; from the first symptoms to the initial diagnosis, and the long road through treatments and recoveries.
Due to the constant changes in my condition, there were additional sections I needed to add to my book, and so the publication date was moved to August 25, 2015, from May. Although I feel like I’m racing against time, I know this was for the best. My book will be as current and true to my condition as possible. Now with the tumor area acting up again, what started out as a plan to defy and conquer brain cancer has now become my state of mind for the future, whatever that may be.
I’m trying hard to not focus on negativity by focusing on what I can do rather than what I can’t, and what I miss. With too much weight lost, and now looking more like Skeletor at far below my normal 135 pounds, it’s difficult to have the energy to exercise and be as active as I used to be. Perpetual imbalance and a lack of full mobility make the gym an impossible destination these days. I also can’t drive, work, or be alone. The strain on my family and friends continues.
Faith plays a large role in my life, especially these days. When all that I and my family once considered normal seems to be slipping away, our faith continues to be strong, and we trust in the Lord to guide us through tough decisions and questions that constantly come up. The most important things I really care about right now are spending time with my loved ones, at any time and at any place, and adhering to the Ketogenic Diet, which I continue to believe keeps all the other parts of my body healthier, in general.
Lastly, of course, I can’t wait until my book comes out. It almost feels as if I’m living for that day. I want very much to reach out to others who are fighting a brain tumor so I can share my journey with them and show my own support. I’ve started connecting with others already through the LiveStrong Foundation and connected with a great counselor who helps me focus on calming my fears and setting some goals. With cancer, it’s hard to be stoic. With all the energy spent on fighting the physical battle against it every single day, there’s not much strength to boost the spiritual side. And that’s so important to me. My counselor at LiveStrong helps me do just that.
One of the lines in my book is very fitting for how I feel inside my heart:
Over the past two years, the greatest lesson I’ve learned is this: spiritual empowerment over cancer marks the moment we begin diminishing its power.
At the time I wrote that, I really thought I was beating my disease. Today, I realize I still am, but in a different way. I’m taking control over the one part of me that cancer will never beat: my soul.
[Editor’s Note: Mindy Elwell’s battle with terminal brain cancer ended peacefully on November 16, 2016, at her home in Buckeye, Arizona, surrounded by her loved ones. Balcony 7 is proud to have been a part of Mindy’s desire to share her story with others facing this life-threatening disease. Her legacy of Defy & Conquer lives strong. Rest in peace, dear Mindy.]