What A Brain Cancer Caregiver Wants You To Know Before You Head to the Polls, aka People You Need to Meet: #45 Kristen Gauly

What I wish I knew before my Mom was diagnosed with Glioblastoma Multiforme…

When brain cancer entered my life, I couldn’t have processed or understood at that moment that it was the cancer that keeps on stealing. It stole my Mom’s speech, her movement on the left side, her laugh, her smile, her personality, in short, it took all of her. And then, it came for us.

My brother, David, and I have been close my whole life. I’ve been blessed beyond measure in that respect. We endured much growing up; both of us faced major obstacles that required full family support to survive. It was always a comfort to know that my Mom, Dad and David would be there to face whatever challenge showed up next. I wish I knew how to prepare to for the day when crisis would result in the death of the leader of the pack. At thirty-six, it’s very difficult to think about how to face the rest of my life without my Mom.

My Mom’s fight with Glioblastoma Multiforme (GBM) was short. It began on Valentine’s Day of 2013 and ended on the afternoon of May 6, 2013. In those eighty-two days, she endured a resection, a stroke three days post resection, and three weeks of physical therapy which kept her from any sort of chemo or radiation. Mom’s left side was completely paralyzed thanks to the stroke, chemo, radiation, continued physical therapy and finally home hospice.

I wish I’d understood the health care system better. I wish I’d known that lack of funding, lack of research and no new treatment was the stark reality for those facing GBM. That death from GBM is the rule, not the exception. I wish I’d known GBM is considered “rare,” and that because it’s such a low priority, it’s considered an undesirable disease to study. I wish I’d known all of these things so I could’ve been prepared, planned ahead, advocated more effectively. But I didn’t.

I wish I knew before cancer that this… IS IT! Of course I know we only get one life; I wish I’d recognized earlier the importance of each day. I wish I’d taken more pictures throughout her life, that I’d spent more time with just her when she wasn’t sick. I wish a million things had been different, but I understand they simply are not. Mostly, I wish I knew how much the death of one family member can change the dynamic of the entire family. We aren’t the same. My Mom was the glue. She held everyone together, carried the Band-Aids and tissues in her purse for emergencies. No one tells you that cancer will change everything. Forever.

I wish I knew how just plain ugly cancer could be. There’s an unwritten rule among GBM folks: Do not compare any other cancer to this. When anyone does so, it is hard not to cringe. I’ve stood beside my dear friend while her Mom conquered ovarian cancer multiple times. GBM is nothing like that. My close friends, especially those who came to see my Mom, learned quickly this was a whole other beast. My Mom had the reasoning ability of a child post-stroke. She could say things that were cruel, such as when she told a friend that I pushed her out of her wheelchair and tried to kill her. Oh how that stung! Long gone was my sweet, smart Mama who loved others so very much. Nothing is quite as humbling as cleaning your Mom during a Depends change or feeding her soup and wiping her mouth.

I wish I knew how much others cared before cancer. People came out of the woodwork when they find out my Mom had GBM. They cooked, cleaned, prayed non-stop, gave gifts, and struggled for words that could possibly make my family feel better. My work family responded in a way you read about in books. They donated money in my Mom’s name to ABTA, covered my butt, and prayed non-stop. They took care of my cat, cleaned my apartment, gave me hugs, and listened when I needed to just spill my heart. My friends did all of this as well, but to see my work family just jump in without being asked told me quite clearly how they felt about me.

I wish I knew about post-cancer, post-funeral aftershock. I was ill-prepared for the after effects of cancer. I didn’t understand that my brain was processing all of these emotions for months after my Mom was gone. I continuously lost items, I forgot what I was doing, would find my keys in the freezer. I found myself continuing to panic with every incoming call and text, and sleep was hard to come by for months. Sometime around the five month mark, I started having nightmares. There are still days—over a year later— when I cannot remember what I’m doing or sleep through the night. While less frequent, the nightmares still love to resurface at the first sign of stress.

Lastly, I wish I’d known that all the things that fell apart did so for a reason. I’m not referring to my Mom’s death; her death is something I’ll never understand.  It is only now that I begin to recognize that sometimes you have to experience extraordinary pain from loss before you decide to change priorities. My Mom was my biggest cheerleader; her cancer helped me see my life much clearer. She was constantly telling us good things would come from her cancer. I’ve made connections with others fighting GBM, begun working to spread smiles through my charitable project for kids with, Brain Cancer Share Your Shirts, and I’ve strived to make my loved ones my top priority everyday. The more I delve into advocating, the more of those “good things” begin to surface.

Brain cancer has not changed my core values or beliefs. However, some parts of my life have been permanently altered. If you ask me which issues are most important to me at the polls in 2014, you’ll find my answers dramatically shifted from those I would have given a year ago. My first priority is now supporting those politicians, regardless of party, who support brain cancer research. It matters. I wasn’t always a major supporter of brain cancer funding, but then again, I wasn’t always a thirty-six year old living without my Mom courtesy of GBM.

Missing Patricia A. Gauly today, and always.

With Love and Hope,

Kristen Gauly

Editor’s note: If you would like to learn more about what Kristen is doing in her mom’s memory, check out her Facebook page: https://www.facebook.com/pages/Brain-Cancer-Share-Your-Shirts/160672910806397

52 People You Need to Meet: #6 Katie Schmiedl

What I Wish I Knew Before My MOM Was Diagnosed With Brain Cancer

On September 25^th, 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).