“ Don’t be afraid to ask for help; you’ll need your strength to take care of yourself and stay healthy. Keep your friends and family close.
Kelly Hoffman Bolinger is a mAss Kickin’ Pioneer. She first started KeepAustinAware to provide resources/information for cancer patients after her personal brain tumor journey. She then founded the Brain Power 5K in Austin to fund Brain Tumor Research and Awareness in Central Texas. We were very honored to sit down with her and ask her about her story.
mK: Thanks for hanging out with us. So, what/ when was your diagnosis? How did you find out about your diagnosis?
KHB: I was diagnosed with a Ganglioglioma II brain tumor in November 2006, I was 28 years old. Halloween day of 2006, I started feeling really bad; so much so that I had my husband come pick my daughter and me up from where we were. The room had started seeming very wavy, I got covered in chills, sick to my stomach and I couldn’t understand what was happening; yet I was able to have conversations and get to our car. I didn’t feel I could drive home. I had had these ‘episodes’ for years so we were accustomed to them, but it had never gotten this bad to stop me from driving before. I spent the rest of the day on the couch, couldn’t eat or barely move. I remember saying ‘that I felt like I was dying’; I couldn’t explain what was wrong I just felt extremely terrible. Nothing seemed to shake my symptoms and I never did improve throughout the day or night. The next morning November 1, 2006 I woke up still feeling sick. After missing our daughter’s first Halloween, I very much so wanted to be ok and went to feed our baby her bottle. It didn’t take long to realize things were not ok. After just a few minutes, I thankfully thought to lay our baby on the floor as I was feeling so bad. And that is the last thing I remember. Fortunately, my husband had worked from home that day. He said he heard the most awful screaming sounds over the baby monitor and came rushing into her nursery to find me having a grand mal seizure on the floor. Our daughter was 6 months old.
mK: What were your symptoms?
KHB: Starting from around age 13 I can remember having these intense migraines that would knock me out for hours. I was a competitive tennis player and I remember several times where I would have to go and sit in the corner of the tennis court because I was having one of my ‘things’. I couldn’t ever make them stop or find a relief. They would be accompanied by a disturbing déjà vu feeling where I could be having a conversation with you; but in my head it would be as if another ‘movie was playing.’ With this horrible headache and out of place feeling, I’d then get a sick feeling covered in chills and very nauseas. I lived like this up until they found the tumor as no doctor prior had ever ordered a scan. It had been blamed on hormones (as this all began when I was teenager) or just migraines. I didn’t realize how often I was having them until I was on anti-seizure medicine when the found the tumor- these seizures had been happening so often that it felt odd to not have them!
mK: Why did you start the Brain Power 5K?
KHB: When I was diagnosed I was scared to death. I searched everywhere I could for some sort of resource or to find a connection of someone else that had had a brain tumor, brain surgery…and hopefully survived. I live in the Austin, Tx area and I could not find anything. In continuing my search I found a race called the Run for the Rose in Houston, Tx funding the Dr. Marnie Rose Foundation for brain cancer research. My family and I have been going to this race ever since I was strong enough to do so. This race was the first time I had ever met and been around another person that had had a brain tumor or brain surgery. That feeling and this race changed my life. It was a priceless feeling, so welcoming and encouraging. At an event like this you also encounter families that have lost loved ones and those that are not doing so well in the battle. I realized on another level how incredibly blessed I was; I had to do something.
Being that there was not a race in the Austin area, a way for families and survivors to connect or a major fundraiser for brain cancer research I thought this event may be something others in our community would appreciate as well. I figured I was not the only person in the area to have gone through this surgery and diagnosis in the area. And I learned how dangerously underfunded brain cancer research was and hoped we could change that. I started the Brain Power 5K to give the Central Texas brain tumor families a chance to connect, raise awareness, feel the support of their community and improve brain cancer research. I wanted the families in this area to have that experience that I have been able to enjoy at the Run for the Rose.
mK: Who are your heroes?
KHB: I would say my heroes are my husband and my daughter. I don’t know how they have dealt with me and all the mess my bizarre body puts us through. I get scared, but it’s got to be easier to deal with something like this when you’re the one going through it. I can’t imagine watching one of them go through any of this. And they do it so supportively and lovingly; they’re by my side no matter what. I couldn’t make it without them. I also must include my dear friends in this too; it’s amazing what unconditional love can do for someone.
mK: Right! What motivates you?
KHB: I feel incredibly motivated to be around other survivors and feel their energy. I am so moved by hearing their triumphs and journeys. If they need you then you may feel stronger or if you need them they fill you up. Whenever I’m looking for motivation, I easily find it by thinking of our Powerful People from the Brain Power 5K.
mK: When was the first time you felt like yourself after your diagnosis?
KHB: I don’t think I’ve felt like old myself, truly. An experience like this changes you so much, physically, emotionally and spiritually. I’ve felt growth yet fallen so many times through all of this. You do experience a lot of loss, unfortunately. But the first time I felt like I would be ok was when I was able to run my first mile by myself- independently. And then really push my body by completing my first half-marathon, it made me feel like I was strong and confident enough to know I would make it.
mK: What makes you laugh, cry, angry?
KHB: Thinking about fun, old times with friends always makes me laugh. When I think about the so many ‘what-ifs’ or see a video or hear a story of a person going through a similar experience, it is so hard. But I love happy tears, could be from wonderful triumphs or great kindness! Seeing selfishness makes me feel angry.
mK: What would you say is the most interesting thing you’ve done?
KHB: It would probably be starting the Brain Power 5K. I’m starting to understand what an impact it is having on so many people and that is wonderful. In just 3 years our event has been able to contribute over $140,000 to the Dr. Marnie Rose Foundation for brain cancer research.
mK: Wow! What was the toughest challenge you faced as a survivor? How did you overcome it?
KHB: I think it might actually be accepting that role of ‘survivor.’ I often feel guilty with having survived this diagnosis and I’m not sure how to handle it. I do know how incredibly fortunate and blessed I am to be here. I feel that is a major factor in why I put so much effort into the Brain Power 5K towards finding cure and supporting the brain tumor community.
mK: Now, lets learn a little more about you… What is your guilty pleasure?
KHB: Ice cream and coffee.
mK: Hee hee… If you could have a one on one dinner with any famous person from any era, who would it be and why? What would you talk about?
KHB: Arthur Ashe, he was an incredible role model. He made great things happen by being a kind, caring and giving person. I have always looked up to him and would thank him for his example of how to succeed and care for others.
mK: What do you like to do in your spare time?
KHB: Play with our daughter, run, exercise and visit with friends.
mK: What are you up to now?
KHB: Working on finishing a new and improved website for the Brain Power 5K!
mK: Any advice for people or loved ones that get daunting diagnoses?
KHB: Try to seek out help from someone that has been through a similar situation. I took baby-steps as I couldn’t find support and wasn’t sure what to do. I started off with a brain tumor phone support group, then in-person and now forming connections for others with the Brain Power 5K. It made a tremendous difference to be able to speak to someone else that had been through my experience. Surround yourself with positive people, read uplifting books and try to ignore statics- they’re just numbers and you are a person.
mK: Tell us something about yourself that people probably didn’t know… anything.
KHB: All my life I’ve been incredibly afraid of blood and hospitals. Since my brain tumor, I have blood drawn regularly and end up in hospitals all too often…oftentimes just for meetings though!
mK: Any parting words for all the mAss Kickers?
KHB: Don’t be afraid to ask for help; you’ll need your strength to take care of yourself and stay healthy. Keep your friends and family close.
Kelly Bollinger: ice cream and coffee junkie, Arthur Ashe fan, phlebotomy pin cushion, hospital groupie, and powerful brain tumor research advocate. Thanks for hanging out with us Kelly! Check out the Brain Power 5K when you get the chance!