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

People You Need To Meet #39: Andie McConnell

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What I wish I knew before my friends’ son got brain cancer… This may seem a strange twist on the theme of these blog posts but I wish I knew my friends before their son got brain cancer. When I met them, their son had been in remission for a couple of years, but the pain over what they experienced was still raw. As I got to know the couple, she spoke of the experience of facing cancer with a child and the disappointment in the friends who disappeared during this difficult time. So in addition to the fears and grief that come with a child facing cancer, she spoke of the loneliness and the struggles as a family. She talked of how people they believed would stick by their sides did not, and that some people they didn’t expect to help, did.

Her words really resonated with me, as did her talk of the pain of watching a child go through cancer treatment. Hearing their struggles made me wish that I had known them and had been able to be there for them during their journey because I knew I would have been one of the ones who stayed around to help. I thought of ways I would’ve helped to lighten the load on them, how I would have been there to listen, to help with meals, their house and anything else they couldn’t quite find the time to do. Years later, I met a family with a child with a new cancer diagnosis, and my friend’s words about the loneliness of pediatric cancer rang in my ears.

I decided to make an effort to help them through fundraising and emotional support. Looking back , in some ways I realize I did it to make up for not knowing my friends before their child got cancer. As this family’s child reached the end of treatment, I realized there just might be a real need for support of other families facing pediatric cancer. I surveyed families and found there certainly was a need. I brainstormed how best to provide this support, and it evolved into what is now a nonprofit based in Fredericksburg, VA that focuses on the needs of the parents rather than the child. We provide meals, house cleaning, lawn care, hair cuts, gas cards, a financial relief fund and emotional support to the parents in order to relieve some of their stress and to provide them with more time to focus on their family. I wasn’t able to support those friends during such a difficult time because I didn’t know them, but now my organization provides support to families in parts of VA and MD with similar struggles. We fill the void of the friends who, for whatever reason, are unable to help and for the friends they have yet to meet who will wish they had been there in such a difficult time.

Editor’s note: You can learn more about Andrea’s nonprofit, the Fairy Godmother Project, by checking out her website: http://www.fairygodmotherproject.org/

52 People You Should Meet: #36 Melissa White

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Sweet, little Adele

Sweet, little Adele

What I wish I had known before our barely toddler got brain cancer…

I’ve always been the kind of person that likes to stay busy, have a hand in everything. I like to do as much at our kid’s school as possible, be involved with our parish, help in our community. I had no idea how much we would need all those people. I had no idea that they would rally around us before we even knew we needed it. I’m thinking back to those first days, weeks, months of Adele’s diagnosis and treatment. If someone had asked what we needed instead of just stepping up and doing it, I don’t think I would have known what to say. If I did have an idea, I would have been too proud to voice it. I do now know what we needed and were blessed with, and I hope it helps other friends and families who want to know how to help.

Let’s start with just how debilitating it can be to have a sick kid; a “really sick, possibly won’t make” it kid. It was literally all I could do to roll out of bed. I probably functioned on about 50% of my brain during the worst times, the chemo, waiting on those crucial MRI’s. Nothing extra was happening, lots of McDonald’s was consumed, and we limped along. The worry was physically and mentally exhausting. I had no idea how much worry could knock a person down. Thankfully, I had given up all of my volunteer duties and part time work as soon as Adele got sick. I gave myself permission to focus solely on her and our family being together. Our world narrowed in a big way to the most critical, most important things and everything else had to go, at least for a while.

The best thing anyone did, and continue to do, is pray for Adele. I’ll never forget someone’s message “when you are too tired to pray, I’m praying.” That was, and still is, incredibly comforting. I did have times where there was nothing left, and I was so thankful for the folks out there praying for Adele. To this day, prayer holds us up. We’ve received several relics and medals that we keep near Adele (she has relics of St. Benedict, Gianna and Gerard under her crib sheet). She also has a miraculous medal under there. You can’t really put a chain around a toddler’s neck so sleeping with them (safely) was the next best thing.

Food was probably second best on the list of things folks did. Our kids would have eaten chicken nuggets every night if it wasn’t for our amazing parish, friends, and even strangers. Even better, everyone brought tons of food, so even though we only got a few meals each week, there was plenty of food. Don’t give someone your dishes, please use a foil pan that they can throw away. The last thing they need is to worry about returning your Pyrex. Some of my favorite meals were the snacky ones where we could just grab bits here and there. Also awesome was the meal that could be eaten or frozen. Sometimes we were either out of town or needed to eat other food first. The ability to freeze a meal and pull it out later was wonderful.

Another huge blessing was a family that single handedly took over our lawn care. Honestly, we probably never would have remembered to mow. Even if we did remember, we were tired or gone or just wanted to be together as a family. This goes for the other every day tasks of life too. Go fold laundry or pool cash together with friends and send someone to clean house. We were blessed with a couple different friends who gifted us housecleaning, and it was amazing. The sheets never would have gotten changed otherwise. When you spend an hour or two on someone’s every day work, you are gifting them an hour or two. That time is so precious.

Don’t ask to mow, just show up and do it. I always felt guilty saying yes to help, and I was so busy during hospital stays that I couldn’t keep up with texts, calls and emails. When I did have a minute, there was no cell service or I just didn’t have the energy. Just drop off a meal, or just take a Coke to the hospital. And then go home. I know that sounds mean, but it takes a lot of extra energy to entertain a visitor. Like I said, this is my experience, everyone is different. There were a few, very low maintenance visitors that were very helpful and without them Peter and I would have lost our minds.

Please don’t stop emailing or texting; just don’t expect a response. We had a very busy, social life before cancer struck, and I felt very isolated at times. Even if I didn’t reply, I loved reading the emails and messages. It meant a lot that folks were thinking about and praying for us. A lot of times the message was exactly what we needed right then too, like the friend praying when we were too tired. I know you don’t know what to say, just “Hi, I’m praying” is good.

Our parish, friends and family raised cash for us and created a non-profit fund for Adele at a local bank. This was a huge Godsend that we didn’t even realize would need and continue to need. Medical costs of course are huge, and then all the extras like travel costs, extra eating out when you don’t have the energy to plan a meal, things you didn’t realize you would need (like the time our one week hospital stay turned into 3 weeks.) We have been so blessed with financial support, and it made a huge, huge difference in our stress level. Not having to worry about missing bills or not having gas money was and is a major blessing. It’s also so good for our hearts and souls to see all the folks pouring out their love to Adele in such a tangible way.

We had a core of consistent hospital visitors that kept us fed and sane, and they rank right up there in the top three best things folks did for us. The guys brought food that didn’t come from the cafeteria; they were helpful, and they didn’t care if we hadn’t showered for four days. They would even hold Adele (who was sometimes screaming because she felt like crap and just wanted Mommy or Daddy.) They didn’t require anything from us, and they filled our tanks so we could make it another day. Being in the hospital is rough, being there and watching your child suffer is almost unbearable.

My husband reminded me how much our friends and family stepped up to help with our three big kids while Adele was in the hospital. There is no way we would have stayed sane, and Peter could have kept working without all the help. Peter’s work has been amazing as well, God is definitely guiding us.

We, well, mostly Adele, got “stuff” as well, along the way. Some of it was very needed, like the Basket of Hope we got after brain surgery in St. Louis. She was feeling better, getting bored, and that came at the perfect time. Others mentioned items like quarters for laundry and vending machines, stamps and stationary, actual mail (this was especially nice for our big kids, several thoughtful folks sent them letters and items.) Someone else to send thank you notes on behalf of the recipient – I could not keep up with thank you notes. We were literally in the hospital for almost 6 months with little breaks in between.

There were also sibling packs from the hospital and other folks that helped our big kids not feel so left out. This really depends on the age of the siblings though, it might not be so helpful for smaller kids. We did get a little overwhelmed with toys and blankies at one point, so temper your toy shopping. I will say that twice we got two big grab bags, those were the best. It was lots of random stuff, mostly one time use and/or disposable, for mommy, daddy and Adele. It was a great distraction and time filler and it was great stuff like gum, little snacks, bottled water and bubbles. All excellent items that we wouldn’t have to pack up when we eventually went home.

Speaking of going home, kids on chemo are must more susceptible to germs so things like Clorox wipes and Purell are always nice. That housecleaning comes in nice here too. You don’t realize the level of clean you have to obtain until your kids immune system is completely wiped out and a germ normal folks encounter every day could send them right back to the hospital.

In summary, prayer is number one. Pray, pray, pray. Just knowing people cared about us and didn’t forget us was so important. And then just the regular every day stuff we all do with barely a thought like eating and home maintenance. Time is a huge blessing, anything you can do to give a family more time together is huge. And it probably doesn’t even cost you any money. Stuff is just extra, little stuff that won’t create more work (i.e. finding a place to put or pack it).

Thank you Jesus for all the folks you sent our way, for all the folks you continue to send our way. You’ve blessed us abundantly. Please bless others in need the same way. Please grant Adele complete healing from cancer and many, many, many years with us on Earth. Jesus, we trust in you.

Editor’s Note: If you would like to keep up with little Adele and her journey, you can follow Melissa’s blog here: http://workinprogress-melissa.blogspot.com/?m=1

People You Need To Meet: #17 Amy Phillips Hanley

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What I wish I knew before my husband Bobby was diagnosed with cancer: real strength can be found in vulnerability. My relationships were about to change. All of them. Some got stronger…and they weren’t always with the people I expected.

There are emotional highs and lows with a terminal illness, and a lot of personal battling between unrealistic hope and realistic easing of the pain and sadness for the patient. I’ll never forget the look of utter devastation on Bobby’s face as we were told the diagnosis and prognosis. My 45-year-old husband was incredibly smart, had the daring and confidence of a jewel thief, and an unrivaled comedic wit. As he weakened and declined, his face and stomach became bloated by steroids, his personality and speech were childlike, and he slept all of the time.

The people I thought would handle this well were not able to for many reasons. Some of the reasons were selfish. Some of them were entirely innocent and circumstantial. All of them are forgivable because who plans cancer? I spent a lot of the time putting on a positive front (especially with our 14-year-old son Jack), when I was aching and falling to pieces inside. I felt it was important to stay strong and let Jack remain a child. I had to find people who could comfort me and talk it all through.

My mother was diagnosed with lung cancer a month before Bobby’s diagnosis, so she was unable to provide the support I needed. Unexpectedly, my sister became my rock. She listened, lent a hand, went with me to appointments, added a touch of humor, and respected me when I wanted to be alone. I lived in Tucson, and she lived in Richmond. I am truly grateful for family ties despite the miles.

Unfortunately Bobby’s mother’s grief came tumbling out in very negative ways. Not once, not one single time did I hear Bob complain or cry “why me” or curse the fates, or express any of the anger or bitterness that I think I would feel. He gave me, Jack, and his lifelong friends the ultimate example of manly courage, of uncomplaining stoicism, of quiet and unassuming heroism. His mother devoted her time to her own unhappiness and fears. She wouldn’t help me take care of him and left two days before he died. I’m a mother…who leaves their dying child?

Possibly one of the saddest moments I shared with Bob was when he asked me (a week before he died) why his best friend since sixth grade had not come to visit him. I didn’t have a response so I just told him I thought he was afraid of bringing drama into his own life. A couple of my close friends abandoned me when Bob was diagnosed, and they are not a part of my life now. If I see them I am polite, but they are not my friends.

After Bob died I slowly withdrew from friends and family, and the weight on my heart was like a boulder. I realize now that if you spend a lot of time alone while you’re grieving, it can make the feelings of loss worse. As bad as the pain may be, do your best to do something productive and worthwhile, and have a normal routine while you grieve. Be kind and patient with yourself. I am happy again. The weight of the boulder is more like a pebble. I carry that pebble in my pocket to remind me to let go of the trivialities of life. It is said that people who have faith can turn to it in order to help them through a loss. I believe in life after death…and I know Bobby is always with me. I feel him every single day.

People You Need To Meet: #14 Stacie Guirguis

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Basil bfore_after

December 24th, 2006. Our son was only 4 months old. A normal annual physical, landed the love of my life in the ER. After a urine test and some blood drawn, he was asked to go for an MRI of the brain because for some reason his PH Levels had sky rocketed. With not an ounce of fear, he did this and before the MRI was complete, they sent him to the ER. He had no symptoms. NOT ONE.

Four hours later, after many faces of many doctors, nurses; after many “I am so sorry you are going through this”, “what a young couple”; a doctor…very tall in stature, calming, yet gracious face holds out his hands for mine, but not wanting any comfort, I put mine in my pocket.

“You have a brain tumor. Two, actually. One the size of a melon in the left frontal lobe of your brain, The other on your brain stem.”

Silence. My legs became weak. My head heavy. My heart stopped. What? “Ma’am, I am so sorry. Your husband has brain cancer.”

Basil lived graciously with brain cancer for 6 years. His first craniotomy was grade 2, his third proved to be the deadly GBM. Offered only 15 months to live, he never believed ONCE he was going to die. But he passed away only 14 months later, as I lay next to him, spooning the man I said I would grow old with. His last breath was an exhale…and as I waited for that inhale, I felt his presence leave. Forever 38. He left behind two beautiful sons. Evan was 6, and Shane just barely 2. Rest in Peace my love. 5.31.2012

 

“What I wish I knew before my husband was diagnosed with cancer.”

Faith. It comes and goes. I prayed and prayed. At times, as much as I prayed is as much as my faith was tested. Sometimes I would walk away from it. Sometimes I would submerge myself in it. Sometimes I would hide behind it. Faith can mean so much and so little at the same time, if you have no belief that there is a bigger and better out there. Every time I lost my “faith”, I was reminded that I had 2 little blessings I called my sons and I was grounded again.

Numb. I was numb for almost 6 years. Numb was all I could feel. It was like a blanket that held me together, one that I wish I could have seen before I lost my husband. Being numb, hardened my marriage yet broke the intimacy; it shrunk my faith and suffocated my fears. Numb also protected me and provided my life with a pre-conceived strength I thought I had during those 6 cancer filled years.

Friends. I needed them. Family. I need them more.   My family was taken care of while I nursed my husband in his now infancy stage –washing him, hold his head up for food, while I sang him his favorite songs, terribly…while I brushed his teeth and cleaned his messes. Family and friends came. They provided smiles for my children, they made sure food was on the table and that homework was done. My house was clean and my dog was let out. Family and friends, see your darkness, they feel your pain and without asking know your weakness. They just showed up. I love them and owe them more than a “thank you” will ever encompass.

 

Lessons to pass on:

Let go. Let go of the things that weigh you down. Trust life. Sometimes answers are not what we need.

Breathe. Really breathe, though. Take a deep breath and remember that blessings surround us daily.

Smile. My husband always said. No matter what smile. Even if you aren’t happy. Smile. Smile at a stranger, a passerby, it confuses people, and it feels good.

Stop comparing. In hindsight, I would always ask, “Why me?” My friends aren’t going through this. Why me? Why? Because shit happens. Work with the time we have. Every moment is a gift. Some people aren’t even given time.

Love endlessly.

Hug more.

Sing in the shower, even if your kids tell you that you sound like a man.

Dance. I mean really dance. Like you think you can dance.

Have a drink. A stiff one or a favorite one, yummy one at least once a week 😉

Have compassion.

Hold your husband’s hand. That simple gesture sparks something irreversible every time you do it. And it’s always an irreversible good spark.

Always say I LOVE YOU.

Never, ever go to bed angry.

I have been a widow for almost two years. I wish I said I love you to him more. I wish I held his hands more and remembered his scent. Nothing prepares you for cancer. Nothing. It’s a journey that takes its toll and manages to change you. My heart breaks daily for my boys who will probably forget how their dad held them, how their dad hugged them and told them how much he loved them. His legacy lives on through them…it’s a continual gift my husband has left me behind.

Finally. Be GRATEFUL and show grace. Gratitude carries you through, and grace is your guide.

Cancer. Brain Cancer. Death. “What I wish I knew before my husband was diagnosed with cancer.”—I wish I knew a cure. I will love you forever, Basil. Always and forever 38.

Editor’s note: Stacie was kind enough to share pics of Basil, and we decided to show him before brain cancer and a few weeks before he died. To me, his eyes tell a story none of us could put into words.