A note from the BP5K Race Founder

Dear Brain Power Family,

First, let me explain why I chose the word ‘family’.  Webster defines family as: “a group of people who are related to each other.”  When I started the Brain Power 5K in 2011, the nearly 400 people in attendance were mostly my family, dear friends and people that have now grown into great friends from the race over the years.   You are a part of the Brain Power 5K because you care. We are related in passionately caring about our cause, your loved ones- the Brain Power 5K family.  

In 2006 at 28 years old, with a 6 month old baby; I was told I had brain cancer. There is not a descriptive enough word of fear that fit this situation and those that followed.  My husband and I had just been married for a couple of years and were just trying to figure out life with a newborn. And then we were thrown directly into ‘for better or for worse’…

Immediately (of course against all recommendations), I took to the internet to find any sort of clue of what to expect with brain cancer, brain surgery, seizures, etc. You can imagine the results. My biggest fears only worsened. My neurosurgeon’s office had to end up calling me several times to schedule my brain surgery…who WANTS to have their skull sawed open,  their brain dug into and screws drilled into to keep it together. It just didn’t seem right. It was a terrifying time. But, I finally succumbed and had it on the calendar for February 8, 2007.

Thankfully surgery went well; the surgeons were very aggressive and were able to remove my entire tumor- a Ganglioglioma grade II. I was very blessed in that I didn’t have to pursue any further treatment other than the craniotomy and continued seizure management.

Throughout my diagnosis, surgery and recovery I desperately searched for someone that had experienced a brain tumor, brain cancer, brain surgery, seizures- anyone to talk to- hoping to find someone in the Austin area that could relate their similar experiences and any advice. There was nothing. I knew I couldn’t be the only one in the Austin area to have had this diagnosis, experience and brain surgery.

I continued my search and found the Dr. Marnie Rose Foundation in Houston, Tx. This foundation was created out of the love of the Rose family to memorialize their dearly missed daughter, sister, niece- Marnie- who they lost to brain cancer at just 27 years old.  They host an incredible fun run every spring in Houston called the Run for the Rose funding brain cancer research at MD Anderson. The Dr. Marnie Rose Foundation has contributed an amazing $3,568,000 for brain cancer research and pediatric health initiatives to MD Anderson Cancer Center and Children’s Memorial Hospital since 2003. The Dr. Marnie Rose Foundation works hands-on with the top researchers of the world at MD Anderson to fund only the MOST promising research for a cure.

I still remember my first time meeting another brain tumor survivor at the Run for the Rose in Houston. It was more influential and impactful than meeting any celebrity. Meeting the survivors was so powerful, fulfilling and emotional; I remember not wanting to leave. The relief to see others making it and running or walking was awesome; it was such a comfort to know that I could be ok too.

I returned to the thought of; ‘I can’t be the only one in Austin that has gone through this’….and what happens if my tumor comes back!? And there is not ANYTHING being done here to improve things for brain cancer research to help! That scared me.

As I got stronger and stronger; I decided it was time. We NEEDED to do something about brain tumors and for the people in Central Texas. That was when the Brain Power 5K was born.

From our first year at the park in 2011 raising $26,000 to 2014 on the streets in Cedar Park with about 1,700 in attendance and fund-raising over $105,000 our BP5K family is STRONG and growing. A brain cancer diagnosis is the scariest thing I’ve gone through and not having anyone to relate to is hard, real hard. Now there are a couple thousand of you that understand and for all of Central Texas to reach out to.   

It is obvious how necessary this funding is needed when reading through the 170 tributes throughout race day, the 50+ brain tumor survivors and the awareness that there are over 120 different brain tumor types- meaning that there is not a comprehensive treatment for all.  And I am personally reminded while at my most recent check-up reviewing my MRI when my neuro-surgeon begins with “maybe you should make an appointment with the neuro-oncologist, these things do come back sometimes”… We need to find an answer for all of our Powerful People.

Thanks to YOU, I believe we are getting closer to those answers.

Thank you everyone for making the 4th Annual Brain Power 5K such a huge SUCCESS! Thank you to our sponsors, volunteers, team leaders, planning committee, friends and family!! -- for your unbelievable commitment, your amazing fundraising and continuing to spread the Brain Power 5K’s mission. You are making the BP5K great and we are so thankful and excited about the impact we are making with you! Enormous strides in life-saving research against brain tumors are being made thanks to you! Brain tumor survivors will continue to get the support they deserve with our year around gatherings and events with the BP5K. And local brain tumor patients will get necessary care assistance they may have not received otherwise. Your fundraising will be going to brain cancer research at MD Anderson Cancer Center; local brain cancer research at Baylor Scott & White Neuroscience Institute and to assist local brain tumor patients financially.

You are the Brain Power 5K and you are family. Thank you for making Central Texas’ Race Against Brain Cancer the best yet!

Stay in touch and we’ll see you soon!

With so much thanks and hope,

Kelly Bolinger

~May 2015- BrainPower-thon

(all brain tumor survivor team to complete marathon distance as a relay team)

~Summer 2015- Brain Power 5K Kick-Off Party

~September 2015- 5^th Annual Brain Power 5K

Survivor Story, by Cinde Weatherby

Cinde Weatherby

At 62 years old, I can still remember when people were hesitant to even say the word “cancer” out loud. I’m not sure why. Even today, there are friends and acquaintances who hesitate to share the fact that they have cancer. Maybe it is my contrariness or my stubborn obsession with the truth, but while I don’t feel defined by the fact that I have brain cancer, I’ve never been fearful or embarrassed about sharing that fact. I’d rather tell my story than have someone else invent the narrative. Mine is a long narrative beginning in 1998, with surgery 10 years later, and a pretty quick recovery and relative normalcy for the 5 years since.

Not one of us on this planet knows when his or her time will be up. But, we with brain cancer surely make life decisions that factor it in. In October 2013, my latest life decision was to leave my career and concentrate on three things: (1) continuing to improve my physical fitness; (2) volunteering my time to causes I believe in; and (3) exploring avocations that previously I convinced myself I didn’t have time for – having fun through travel, art, researching family ancestry, music, and reading. I couldn’t be happier with my decision!

In this blog I will share the details of my brain cancer story, as I know all of us survivors are interested in knowing the stories of others. I never encountered any individuals with the same issues until getting my contact with the BP5K in 2013. Hearing their stories are interesting to me and I believe important for them to share.

My journey with brain cancer began in 1998 when an “anomaly” was found in my brain during a CT scan to be check for MS although I didn’t know that was the case at the time. I’d been having a leg ache and my family doctor sent me to a neurologist for further examination. To rule out MS, he did the scan and called me late one night as I was packing for a two-week road trip with my son. He had found what he thought was evidence of a stroke. Since I had no symptoms of a stroke (and none of the high risk factors either), he later sent me to a neuro-oncologist at the UT Southwestern Medical School that he had heard speak at a conference. Still having no symptoms of any tumor from 1998 to 2004, she continued to monitor my abnormality on a routine basis with MRIs and neuro check-ups. Once during that time, she had me see a well-respected neurosurgeon at the school. He looked at my MRI films and did not think it necessary at that point to operate, especially since the abnormality (then being alternately referred to as a possible cyst or tumor) had not grown nor caused any problems for me.

Early one morning in November 2004, I had a seizure in my bed and was rushed to the local ER. I have no memory of the seizure nor the day after that. The neurologist then suggested another visit to the neurosurgeon, who said he believed the need for surgery at that point to be optional and suggested that I instead use anti-seizure drugs. It was nearly two years before I had another seizure, and then nearly a year until the third. Each time, the seizure medication dosage was increased. Then I had two seizures six months apart. The last one was very minor, and perhaps not a seizure but a reaction to the anti-seizure medication. Unlike the other seizures that I never knew were coming, I felt the need to get on the floor and caught my foot on something that twisted my right leg and broke both small bones just at the ankle. I saw the neurologist two days later for my routine checkup and when she saw me on crutches she suggested it was time to discover what the thing in my head was since I was going to be out of commission for a while with the broken leg. Two days later I saw the neurosurgeon who agreed it would be a good idea and scheduled the surgery for a week later. Being in the right frontal lobe in a highly accessible location, he felt very confident of good results.

I had a craniotomy and the tumor was removed October 7, 2008. The neurosurgeon told us later that the neuro-oncologist had been correct in her suggestion that it be removed. While he never used the word cancer that I recall, I did read on paperwork received in the following weeks that it was a grade II oligodendral glioma. Neither radiation nor chemotherapy was deemed necessary by either physician. I was home in my own bed on the third night after surgery. I was back at work part-time in one month (in a walking boot and taking the bus to/from work). I had no cognitive or physical deficits from the surgery or the tumor.

During my first three-month check-up with the neuro-oncologist, she suggested that the new MRI seemed to indicate some cancer on the margins and that I should consider a year of chemotherapy. The surgeon was more prone to believe that the films just showed the cavity and healing from the surgery. After considering it several months, I agreed to the monthly 5-day oral chemo, which in hindsight was not too bad. At the time, the worst part of it was lethargy, extreme constipation, and weight gain. However, as evidence of it being bearable, during that year, I was able to work full-time, travel for work if needed, receive an offer of a new job and move from Fort Worth to Austin, and go on with my life.

Thus far I have had no additional seizures. I continue to have regular MRIs at intervals that have been lengthening – from every two months to now seven. Since 2010, radiation has been a topic of discussion a couple of times, but not agreed upon by the surgeon or me. My last MRI review and neuro visit was just this week in Dallas. It is still believed that I may have remnants of tumor at the margins of the resection, but any growth is very, very slow. Yes, just before the MRI each time, you worry about the potential results. But the rest of the time I try to remain focused on my daily life and all the things that I still want to do. I strive to not let the disease define me. Since retiring, I typically jog six days a week and workout with weights two days. I’m in better physical shape than in any of the 43 years that I was a workaholic.

I guess I omitted the fact that I had left my husband of eight years and moved to Fort Worth about six weeks before breaking my leg and the surgery. My first two weeks of surgery recovery were enormously aided by my sister staying with me. She had just retired from a very successful corporate position in Florida and was the first person I called when deciding to undergo surgery. I will never be able to repay her for the wonderful care and help that she gave me during that period. I’d just moved into a home that wasn’t even really put together and while I slept, she shopped and made my home more livable. My son also spent several days with me just before surgery and afterwards even though he was in his last year of medical school and living/working in Austin. My lovely daughter-in-law helped me get to appointments just before my surgery, staying with me in Fort Worth when she needed to be back in Austin working on her Ph.D. As an extremely independent person, it is very difficult for me to ask for help. I was so blessed to receive it from wonderful family, good friends and even those at work that I barely knew.

So that is my cancer story. It’s full of good outcomes. I’m truly living the good life and having the opportunity to pursue my desires and also receive the rewards of being able to devote some of my time to the benefit of others and the greater good. I see such courage and stamina in so many of the people I’ve met through BP5K who are dealing with so much more than I’ve had to face. I applaud the efforts of the BP5K founders and volunteers who are so dedicated to providing support to those with the disease as well as the people who care for them. It is so encouraging to witness this fundraising race contributing real resources to researchers conducting trials that in the not too distant future could offer new hope and treatments. That hope is what we all share for each other.

For BP5K 2014, I’ve just initiated a team for the race and call it Cinde’s Striding Strivers. The word “strive” has always been a favorite. It is an honest word that implies great desire. In the dictionary you will find it defined as “to exert oneself vigorously; to try hard; make strenuous efforts toward any goal.” I feel somewhat confident of reaching my goal of 5 team members, but will strive for it to be many more than that who join me in walking, jogging, or running or offering their funds for the cause.

Join Cinde's Striding Strivers and support her here!