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: #3 Danae Hischke

What I wish I had known before my son was diagnosed with cancer.

My oldest son, Jordan, was diagnosed with a Spinal Cord Glioblastoma when he was 22 years old. Chances are you’ve never heard of it. It’s one of those “rare” cancers that few doctors, even oncologists, ever encounter in their careers. Jordan also had moderate/severe autism. My husband and I were not new at advocating for Jordan’s needs but I wish I had known, could somehow have been prepared, for how much farther we would have to go after he received a rare cancer diagnosis.

I’ve worked as a primary clinic nurse for 30 years so I’ve seen a lot over the years. Nothing prepared me for being the mother of a child with cancer. I wish I had known how much I would need to trust my instincts, my gut feelings…

Our cancer journey started in January of 2009 when Jordan seemed to have some difficulty with his left ankle. It was difficult to step up into the school bus or our van. We took him to our doctor who x-rayed his ankle and thought maybe it was sprained. A week later Jordan was saying that his knee hurt. Another trip to the doctor and another “clean” x-ray. A week later and my food loving son is refusing to walk to the cafeteria at work. January 20th was his last day of work and also mine. We took him to the Orthopedic specialist we had seen in Milwaukee for an unrelated problem. At this point he was in a wheelchair because he couldn’t walk without holding onto the wall or a person. Blood tests, bone scans, x-rays. Everything “normal”. So our family is at home with a young disabled adult man who can’t walk. But everything is “fine”. On February 4th, when my 200 lb husband had to carry my 180 lb son down the stairs we were at our wit’s end. We drove to the ER (again!) and were determined to stay there until we were given answers.

With the help of Jordan’s old pediatrician, he was admitted to the neurology floor with a diagnosis of Guillian Barre Syndrome. It made sense. He had ascending paralysis and protein in his spinal fluid. Three weeks in rehab and during that time Jordan completely lost his ability to walk. He also lost control over bladder function. We still didn’t question the professionals. Soon after he lost bladder control, we were released home to continue rehab. At this point Jordan was in a lot of pain but the “experts” told us Guillian Barre Syndrome isn’t painful so Jordan must be faking the pain to get out of therapy! Alan and I should have known better. Jordan had always had an incredibly high pain tolerance. He displaced his elbow when he was 3 – without crying. He had surgery to remove part of the bone in his arm and needed no pain meds after – and no crying. So now he’s crying and saying his hips hurt and we are told he’s “faking” and to just give him Tylenol.

Jordan’s diagnosis of spinal cord cancer came in March of 2009 after an MRI of the spine was finally performed. Surgery to hopefully remove the tumor was scheduled for the next day. It was too late for his mobility. He was permanently paralyzed from the waist down before he went into surgery. Fortunately, we had an incredibly compassionate and caring neurosurgeon who delivered the devastating news to us that our son had a tumor that could not be removed, only biopsied. Not only would Jordan never walk again, but he would be lucky to live a year. Most likely scenario would be that the tumor would continue to grow up his spine (it started in the lower lumbar region), and he would gradually experience more paralysis – and excruciating nerve pain as this occurred. So much for “just Tylenol”.

We were very fortunate in one sense though. We had a neurosurgeon and a neuro team who gave us the knowledge we needed to start advocating for the best care possible for our child. We were encouraged to search for second, third, even fourth opinions. Given the terminal nature of the disease it was gently stressed to us how important it would be to weigh quality of life against quantity.

I need to say that after those first couple months, after the real diagnosis, I have no regrets in the care Jordan was given and the advocacy our family did on his behalf. A lot of the credit for that goes to the incredible medical professionals that we encountered throughout what turned out to be a 3+ year journey. They helped us every step of the way in determining what was right for Jordan and what was right for our family. There were a couple professionals (doctors, therapists) who didn’t make the cut and needed to be “let go”, but just a couple and it was easy to cut them loose! They didn’t fit into our plan for what we felt was right for Jordan.

When it came to anything Jordan related we learned to trust our instincts, trust our gut, trust each other, trust God, and research, research, and more research. Jordan died peacefully and pain free at home on June 24th, 2012 with family and friends near his side. He lived and died on his own terms with help from a great team.

Always Jordan’s mom,

Danae