What I Wish I Knew Before My MOM Was Diagnosed With Brain Cancer
On September 25th, 2012 my mom had an MRI after experiencing headaches and a handful of other odd symptoms over the previous months. After a biopsy and what seemed like the longest two weeks of our lives, we were given the diagnosis of Glioblastoma Multiforme (GBM). Two of the ugliest words I’ve ever heard.
I wish I knew what a thief this disease was. I’m talking beyond the death part. My mom enjoyed several things in her life, but three stick out very clearly for me. First and foremost, family. She retired at 59 to help with her grandkids. She had eight overall but five were born in a 13 month span starting around the time she retired. Each was her pride and joy. With the GBM diagnosis, she immediately lost the ability to care for her grandkids on her own. Second, physical activity. My mom played tennis competitively a few days a week and also worked out every morning. There was no physical activity she didn’t enjoy or excel at. She tried to be physically active for as long as she could but couldn’t play tennis competitively and that was devastating to her. Third, reading. She often fell asleep with the light on and a book on her chest. Though she retained the ability to read for a little while, she eventually lost it.
I wish I knew what it really meant to lose your independence. I often thought I never really had independence because I lived at home throughout college, had a baby while still living with my parents, and then moved into a home with my child, so I was never in a “place of my own.” My idea of independence has changed significantly. The loss of independence due to GBM can start with immediately losing the ability to drive yourself anywhere you want to go and can be followed by no longer being able to be left alone. Then there is the need to rely on others to make your medical decisions because you can’t comprehend your options. These can be the initial, painful losses. Down the line….needing others to get you in and out of bed, on and off the toilet, dressed, fed, bathed. My point is independence isn’t being on your own…..it goes way beyond that. You really have no idea what loss of independence is until you’ve witnessed this.
I wish I knew what the road to death by GBM would be like. We knew that death would come much sooner than it should. We were given the statistics. The average life span is only 15 months. Only 20 percent of people diagnosed with this disease live to the two year mark. But you’re never really prepared for what it LOOKS like or how quickly things can change. To see a once physically fit, strong woman become a physical and mental shell of herself is shocking. Bedridden, bloated abdomen from medications, skeletal legs from muscle loss, blank stares as you realize she either doesn’t recognize you, can’t recall your name, or can’t comprehend that you’re even there. The truly unfair part of brain cancer is that it not only destroys the organ in which it resides but inevitably all of you because it’s your BRAIN. Once calm people become agitated, once loving people become emotionless, once happy people become sad….all while your body begins to fall apart because its command center is being eaten away by a parasite called brain cancer. All the basic tasks…walking, talking, thinking, breathing, chewing, swallowing…. become difficult and ultimately impossible.
I wish I knew more about treatment options. My mom was one of the lucky ones that had the right genetic markers to respond positively to chemotherapy. Given that, should we have passed on concurrent radiation? The tumor was held at bay by the monthly chemo up until the time we decided to stop treatment. My mom’s downfall was ultimately the radiation. Radiation can continue to kill off “good brain” for months and years after the actual treatment is over. Because the tumor was inoperable, “standard of care” or six weeks of concurrent radiation and chemotherapy, was all we were given as a treatment option. When in this situation, you put all faith in the expert that is giving you your so-called options. Since then, I’ve read about a woman who has thrived for over a decade with GBM and she refused radiation and only did chemo. Granted, her tumor was operable, but it still makes me wonder…should we have done that? Would the chemo, on its own, have been enough to extend a quality life given the genetic markers? Could we have then avoided the radiation damage that ultimately destroyed all aspects of who my mom was? I will never know the answer to these questions but I can tell you they haunt me.
This experience has educated me in both good and bad ways. The good that I’ve learned from this is that I should follow my mom’s lead and always make family my number one priority. Though I am trying every day to reprioritize, and admit I haven’t been great at it so far, there’s nothing that should be put ahead of family.
My 62 year old mom is currently under Hospice care and approaching the finish line of her journey through this horrible disease. She is very eager (and oddly so are we), for her reunion with her mother, father, and two of her brothers who also went prematurely before her – Joe (23) and Mike (57).
This Grey Matters Blog 
I think that many of us who have watched our family members go through a GBM experience much of what you are feeling. I really like the way that you wrote about it. When my mother in law was diagnosed.. My husband had previously been diagnosed with an astrocystoma. But the GMB diagnosis meant a grim prognosis. My husband and I knew what it meant. But our family kept saying she would pull through.
We did hear the decades surviving stories and in some ways it made it worse. She fought very hard. And we all questioned whether the choices made were the right ones. Should she have participated in trials. Should she have tried something more holisitic. Should we… but we came to terms with the choices.
It is a very hard thing to watch and we continue to share the stories about her vitality and the good times that made her unique.
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