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

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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: #12 Shawn Ratcliffe

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What I Wish I Knew Before My Son Was Diagnosed with Brain Cancer

I wish I had known how big a role you truly play in the medical care of your loved one. TRUST YOUR INSTINCTS! They are nearly always right and you know your family member much better than the doctors. Also, make friends with the nurses – they can be a huge advocate when you need a different opinion or help in understanding the “system” or even getting past some of the quagmire you encounter with all the different specialists insisting on their unique treatment plan.  Ask to see the “chart” (if they will let you) so that you can better understand just what the doctors might be thinking. If you don’t feel comfortable with the answers you are given, keep asking, don’t be brushed aside as if you are too paranoid (“just being a Mom”), don’t back down, and know that the doctors are doing their best but in the situation of brain tumors their best is still greatly lacking in knowledge and expertise.  Every patient is different, and YOU are the best one to help your loved one. From diagnosis to death is a rollercoaster ride on every possible level, take one day at a time and always look for the positives.

For us, it started out like any other Saturday morning.  Matt and I had breakfast, no one else was up yet. He was off to get his eyes checked as we were sure that was what was causing his headaches. Not long after he arrived at the Dr’s office he sent me a text “They want me to get an MRI”. I was stunned, and in my heart, I knew we were headed for something scary.  Within a few hours, we heard the words that would change our lives forever. “A very large mass on the right front lobe of your brain. It is cancer.” He was 20 years old.  By Sunday afternoon, 24 hours later, the tennis ball size tumor had been removed, or at least 90% of it. Matty bounced back like a true warrior, despite major pain and swelling, and on Thursday afternoon, he and I walked out of the hospital, confident that the worst was behind us.  Naïve, I know.

Within a few weeks, the swelling was so bad that they had to put in a VP shunt.  Within about a month, they removed the shunt as it had caused massive infection.  He was now experiencing Grand Mal seizures, loss of memory and functionality.  Shortly after that, he was fired from his job, and we added major anxiety and depression to our list of issues.    Basically, everything that could go wrong did go wrong.  He continued to focus on school, and within just over a year, he graduated top of his class at ITT Tech. It was truly a highlight of his life.   After 6 weeks of radiation, 11 months of chemo, and 5 stays in the hospital we finally heard the words “no evidence of tumor”, and it looked like we were finally getting a break!

With his confidence at an all-time high, he accepted a job in San Francisco, California, and we moved him out there.  I was, of course, devastated and proud all at the same time.  There were many struggles during the 18 months he was there.  He had just gotten his dream job working for Google when we realized the infection had never really gone away, and two more surgeries would be required.  The first was to remove the infected brain plate and start him on aggressive antibiotics.  Of course, during that time the cancer returned, and by the time they were able to replace the brain plate, the tumor had grown to the size of a fist.  It was stage 4 and angry.  The doctor was so aggressive in the recession of the tumor for the fifth and final surgery that Matty lost half of his eyesight in both eyes, the use of his entire left side, his short term memory, and some of his cognitive skills.  We managed to get him home to Valley Center, Kansas after an extensive stay in the hospital and quickly signed up for a clinical trial through Mayo Clinic.  But to no avail.

Just days after his 24th birthday, we were told there was nothing more they could do.  Matty wanted to go home and party with his family and friends and that is just what we did.  For the 3 weeks and 3 days he was with us, we opened our home to anyone, anytime.  Friends and family came from all over the country to spend time with him, reminisce about the good times and embrace the present, soaking in every moment with him. It was such a difficult time filled with tears, laughter, heartbreak, stress, and always love. Lots of love.

Matthew came into this world on a Sunday morning at 8:53am as a content, happy baby boy and left on a Sunday morning at 8:35am as a peaceful young man ready to let go of this life and seek out new adventures. It was a true privilege to be with my son for both. I cherish the memories that help me never forget, help me learn, help me survive.

During his entire fight my son displayed a kindness and gentleness that I could only watch, I felt none of that.  He always thanked everyone for their assistance and never lost his patience, despite severe pain at times.  He was constantly trying to help people feel comfortable with his cancer, with a ready quip or comeback to make them laugh.  Often times when a nurse finally arrived with pain meds to help with a horrible headache, he would purpose marriage and make them know he appreciated their efforts. I, on the other hand, was tenacious if not demanding when it came to his care and pain management.  His last effort to help others was to donate his body to science.  It was his hope that somehow he just might help find a cure so others would not have to endure what he did.

My wish is for everyone to enjoy today, whatever it brings, and make the most of it.   My son is gone in body, but he lives on in our hearts and our memories.  I am a better person having experienced this pain and heartache, no matter how awful it has seemed at times. It has softened the rough edges, dimmed the harsh blacks and whites and helped me focus more on the moment. I have finally come to a sort of peace with the fact that I’m alive and healthy, despite my desperate pleas that I be allowed to somehow take his place.  Matthew is my hero, and I just hope that I can make him as proud of me as I am of him!  Live, Laugh, Love

 

 

 

 

52 People You Need to Meet: #6 Katie Schmiedl

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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).

52 People You Need to Meet: #2 Helena Curtis

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My husband, Ryan, was diagnosed with a Grade IV Glioblastoma Multiforme brain tumor in 2005 at the age of 29. My once very healthy and strong husband started having headaches that he couldn’t kick, then headaches with vomiting. Then one day, after working third shift as a Deputy Sheriff, he woke up on the floor of the bathroom and did not know why. We had been married for 5 years and had two daughters…our life was never the same. In an effort to convey even a small ounce of what this journey entailed for him, our girls and for myself, I am writing my letter to him…for everyone reading this.

To My Best Friend in Heaven, I wish I had known that you were going to be angry after your brain surgery. No one prepared me for how you would feel. The fear of the unknown and uncertainty of your future came out in angry words, and you had every right to be mad as hell. If someone had told me what to expect, I would never have taken it personally. I would have been better prepared to accept your anger and help you cope with it. Now, I carry my own anger.

I wish I had known that stacks of medical books and physician’s articles would never give me the knowledge and skills I needed the most for you. Medical terms, chemo side effects, and hoards of medication pamphlets never taught me how to care for you emotionally and mentally. It took time, patience, tears, hope, pain, practice and knowing you as well as I did, to try and ease the burden you carried within you that the cancer had not touched. All the hours of reading and research, provided no fool-proof answers, like simple love did. Now, I know I gave you the best love I knew how to give.

I wish I had known how to help you get your life back once your brain cancer was stable. For years you took combinations of chemotherapy and other drugs, in a constant fight and full of hope for beating your disease. Once the active fighting was done, you tried to move forward and struggled with a new normal. I didn’t see that then like I do now. No longer a police officer, you made so many attempts to build a new career for yourself. I did not realize then, how all those toxic “live saving” chemicals changed your thinking and the way you saw things. You were no longer fighting the cancer, but fighting to live like you had before it ravaged your veins. Now, I know what it is like to lose the life you had.

I wish I had known how quickly and swiftly our lives would change. It was only September, that we were told the cancer was growing again. Late May, we proudly watched our daughter graduate. Father’s Day, I fed you your favorite meal and warmed inside to see your crooked grin. Then the medicine stopped working and we had run out of options. In a matter of weeks, you went from fully functional and independent to bedridden and reliant upon others for your total care. You tried so hard to do what you could. Now, I know what it is like to live with unwanted change.

I wish I had known how raw and painful it is to watch the father of your children, your best friend, your companion, and your other half to lose his life. Humans were not meant to endure the death of their closest loved ones; I am convinced of this now. Out of all the doctors, counselors and nurses we entrusted your life to in almost 8 years, not a one of them told me of the intense misery that I would endure while watching you take your last breaths. I still see the entire process in my mind. I carry the helplessness of the Hospice staff in my chest. I hear every struggled sound. I feel your motionless hand in mine…slipping away for eternity. Your last moments here with me replay in my soul, unwelcome, erratic and without notice of arrival. Now, I know the pain of a shattered and irreparable heart.

I wish I had known how alone life would feel once you were gone. You were part of me and I was part of you. Each morning and evening, you were here with me. And now a part of life is gone. I have no way of figuring out how to be me, without you. Now I know what lonely really is. With all this I wish I had known before you were diagnosed with brain cancer, I realize that if I had known the road we would travel…I would choose to travel it all over again just to be with you once more.

Love Always, Me