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!

Erin Boyle Dempsey writes on her family's experience with Brain Cancer

August 17, 2014

By Erin B. Dempsey

Cancer is never a word anyone wants to hear. Especially when that word is affecting someone that you love with all of your heart. When you hear the word cancer and then you hear it is in your loved one’s brain, such news can nearly knock you to the floor. I know this because my dad was diagnosed with glioblastoma on Labor Day of last year, and had I not been sitting in a car with my sister upon hearing the news I would have fallen to the floor. I know I could barely breathe, barely move. I was crying and my sister was crying and we could barely get ourselves to the right building to see my dad and just hug him. After hearing the words “brain cancer” our world fell apart as we knew it and because of those two words my family and I will never be the same.

My dad, James Philip Boyle, was a healthy, active, amazing sixty-five year old when he was diagnosed with glioblastoma. Sixty-five years old. To me, my dad was my hero. A living angel. My best friend. He was the life of the party and the most intellectual man I have ever known. My dad was the love of my mom’s life as he was hers; he was the apple of his grandchildren’s eye; he was a newsman. I spoke with my dad nearly every day and he was always, always a voice of reason amongst the chaos. Brain cancer took all of that away from me and from my family in less than twenty-four hours.

At the time of my dad’s diagnosis, I am being honest when I say that I am not sure I even really knew what a “brain cancer” diagnosis meant. I knew that my dad’s situation was dire. I had read enough that day to know that he (and all of us) were in for the fight of our lives. And I knew that we had very little time to prepare before we needed to take action.

Having to make life and death decisions when you are in complete despair is a terrible position to be in. I would never wish that on anyone. My dad, being my dad, made the decision to immediately press forward. It was his body, his life, his decision. We completely honored it even though it was the beginning of a series of the worst nights of our lives. Following the biopsy, when we had just found out that my dad’s tumor was the worst of the worst, he suffered a terrible stroke that left him unable to breathe on his own for nearly ten days. My dad lost his ability to speak, to move the right side of his body, to walk, to live the life that he loved, in minutes.

To see someone you love in ICU, not being able to breathe on their own and possibly even dying, when just hours before you were celebrating a holiday with him, laughing with him and watching football with him, is something that I am not sure I have ever wrapped my head around. I have come to the conclusion that I may never truly understand it and maybe I am not meant to. I certainly hope that nobody else has to feel this way though. It is one of my greatest wishes and something that I will be working for in my lifetime.

When I think about the suffering my dad experienced after the biopsy, one of the things that comforts me is that he was 100% ready to fight with whatever he had and he was ready to do it at that moment. He went into that surgery room as brave as anyone could ever be and he was brilliant. I am thankful we had that night together before the surgery and I thank God every day for the six months he was able to stay with us after the surgery.

I am different now. We are all different now. Losing my dad to brain cancer has moved me in directions I never thought possible. I am always thinking about how lucky we were to have that extra time with him. To shower him with love and to make sure from the depths of our soul that he knew just how much we loved him and how he had impacted our lives. Not everyone gets that time before losing a loved one, and I am keenly aware of that fact.

I miss my dad every second. There are times when I feel like the wind has been knocked out of me because I realize that I will never see him again. And then I think to myself how many others must feel this way too, and that being in this club is not one that anyone should ever have to be in. Every time I would have to say goodbye to my dad, I would give him the biggest bear hug and say: “Dad, I am giving you all of my energy. Take all of it.” And I know that he heard me and understood me when I said it. Now I am going to give all of my energy to my family, to my friends and to help in the fight against brain cancer. My life is not how I imagined it would be right now, but it is beautiful, I cherish it and I will do my best to make it a worthy one. My dad would have it no other way. 

Join Erin's team and support her here.

Survivor, Jennifer Otto shares her POWER

Hiking the Appalachian Trail had been a dream of mine.  I worked at a large outdoors store in high school and college.  I loved fishing and hiking and the solitude those activities afforded.  I was ecstatic to land my first official job as a special education teacher in a small school district in western Maine.  It was a perfect fit.  The elementary school had 88 students in kindergarten through fourth grade as well as two, one-room school houses in more remote areas of the district. 

Two years into my employment, I had the hiking bug.  I loved being able to drive a few miles and hike for hours.  I had decided to hike the 100 Mile Wilderness which is considered to be the most remote section of the Appalachian Trail.  A friend had decided to go with me, with one condition.  I went to the doctor.  For the past several years, at least 5 years, I had positional vertigo.  Basically, I got dizzy when I tilted my head up.  I grudgingly agreed.  See, I had already been to the doctor when this odd symptom began.  At that time, they figured it was an inner ear issue.  In their words, “the rocks in my head were off.”  I went on my hike, then went to the doctor.

I made an appointment with a neurologist in the closest “large” town, population 8,000.  He ordered several tests including an appointment with an ear, nose, throat specialist, blood work, x-rays and an MRI.   I scheduled an MRI with the portable MRI folks.  Yes, portable.  Twice a month the MRI semi-truck arrived in the hospital parking lot for scheduled MRIs.  I had my MRI on Thursday.  The neurologist wanted to see me the next day.  I should have known.

Everything progressed quickly after that.  The neurosurgeon “thought” it was a dermoid that was just making itself apparent now.  Surgery was scheduled for November 18th with the anticipation that I would be home by Thanksgiving.  From here, nothing went as planned.  Surgery discovered a polycystic astrocytoma in my 4th ventricle between my brain stem and cerebellum .  The doctors were more aggressive because it wasn’t a dermoid tumor, they were unsure what type of tumor it was and they didn’t want to do another brain surgery.

 

 

After surgery, my right side was very uncoordinated and slow.  I had disabling double vision, slurred speech and was unable to walk independently.  Interesting situation to be in when I just hiked 100 miles and was a special education teacher!  10 days after surgery, I was sent to an inpatient rehabilitation facility as I could not live independently and my parents lived more than 2 hours away. I was at the facility for less than 24 hours when I developed meningitis and was sent back to the hospital.  Internal swelling from surgery closed off a duct in my brain to drain spinal fluid resulting in high pressures and eventually meningitis.  I had to have a 2nd surgery to put in a VP shunt that drains spinal fluid into my abdomen.

 It was apparent from the start that I was not the typical brain tumor patient.  I had a habit of not listening to the nurses.  I had such a great memory of numbers.  At that time, there were no cell phones and I had memorized my calling card number as well as phone numbers.  I would often call my neurosurgeon with the littlest aches and pains or to be an unruly patient.  They took the phone and assigned a nurse to my room 24/7.  After two more weeks in the hospital, I went to inpatient rehabilitation again where I worked on talking without slurring, walking, and building strength. When I graduated to outpatient rehabilitation closer to my parents, I went to the in-service classes with the therapists.  That was a first for them, but something they thought I needed to return to my previous employment.  I was even allowed to go skiing with the Maine Handicap Skiers!   I had speech, occupational, vocational, physical, and recreational therapies.   They had weekly meetings to discuss my progress and were always so surprised with how I approached those meetings.  How many times had I been to a meeting to discuss progress with parents?  This was no different. A little over three months after surgery, I returned to work as a special education teacher having had a very unique experience.

I now scribble with my left hand because my right hand just never seemed to improve much.  My slurred speech improved in therapy and my balance improved quickly (but it isn’t perfect).  Four months after surgery, I did not even require a cane!  I was told, by numerous therapists, that I would never hike again.  Is that a challenge?  I went hiking 7 months after surgery (by myself).  Never say never!!!

That was all 16 long, crazy, fast years ago.  Now, I have been married for 12 years and am a busy, stay at home mom of 4 kids.  They have no idea what Mommy went through and that every day for Mommy is amazing.  A blessing.  My tumor was cancerous, but the doctors were pretty confident in what they were able to remove.  I opted not to get chemo or radiation as it was said to be a very slow growing cancer.  If the tumor does ever come back, I hope the medical advances provide better options.  My last MRI in July of 2014 showed no tumor regrowth and I was cleared for 3 whole glorious years before I have to get another MRI. 

My balance is still pretty sketchy as well as my vision.  My double vision initially resolved after about 2 months.  Over the last 12 years, it has gotten progressively worse.  To the point that surgery was required.  I had surgery on my eye muscles in July of 2014 and so far, all is good!  My family nick named me “Toe Pick” soon after surgery.  Basically, I catch a toe and stumble over my own two feet on occasion, like an ice skate toe pick.  But that has not prevented me from running.  The BP5K was my third race.  After I found out about the BP5K, it took me months to sign up.  I was not sure I wanted to open that part of my life back up.  I am so glad that I did.  I am not a competitive runner.  I rarely finish in the top half.  I run because I CAN. 

I spent most of that race in tears.  I expect to spend the 2014 race in tears too.  As much as I love the BP5K, I wish there was no reason for the race.  I wish it didn’t have to be.  It has been healing to meet other survivors, to hear their experiences and to share mine.  I hope, with organizations like the BP5K, the need will soon have a different focus. 

I run because I CAN.

Jennifer Otto

Register on Jenn's Team here!

Why Austin Cancer Centers Supports the Brain Power 5k

Austin Cancer Centers is honored to serve as the presenting sponsor for the Brain Power 5k. We’re continually amazed by the compassion and generosity of Central Texans and we’re honored to join together with them in the fight against brain cancer.

Brain cancer is a particularly deadly and aggressive disease. The five year survival rate is 33.4%. Its effect on children is even more pronounced, as it’s the second deadliest cancer among people under 20-years-old. 

It has touched Austin Cancer Centers, taking the life of one of our own staff's children. Kellen was 11 years old when he first started feeling "weird." It wasn't long after that before he started to experience seizures, and the brain tumor was discovered. After going through surgery, radiation, and chemotherapy - all with a smile on his face and an unbreakable will - doctors were able to extend his life until the age of 15.

  

This experience has only hardened our resolve to bring world class treatments to intelligent and upbeat young Austinites like Kellen––who deserve a fighting chance.

In the face of these sobering statistics and personal experiences, it’s vital that we do all we can to provide hope to the afflicted and support for survivors, while remembering those lost. The Brain Power 5k is a tremendous opportunity to do just that.

At Austin Cancer Centers, we believe that the battle against cancer cannot be fought alone. It requires the effort of the entire community. That’s why we support this race. By bringing together a diverse body of medical centers, research institutions, survivors and caring citizens from right here in Central Texas, the Brain Power 5k shows just how powerful a community can be. Together, we can turn the tide against brain cancer.

 

Join the Austin Cancer Centers Team TODAY!

Register here!

 

~

Thank you for your loyal support Austin Cancer Centers! We are proud to have you as a such a major pillar in the brain tumor community. We are so grateful for all you do.

~BP5K

 

 

Nikki shares on the BP5K

My name is Nikki Gibson. I was diagnosed with a benign subependymoma in December 2012. I was 24 years old. Last year I participated in the Brain Power 5K for the first time. It was so much fun! It was a great feeling being one of the Powerful People. It was very encouraging to be surrounded by so many survivors like myself...to meet people that have gone through what I've gone through. I first decided to do the race after my neurologist told me about it and encouraged me to attend. It's important for me to do the race so I can be a representative for all the survivors. It's also important for me to show support for family and friends racing in memory of lost loved ones. It meant so much to me last year to have my family and friends support me. I hope more of them are able to come out and support me this year. I really love the fact that all the money donated goes towards brain tumor research. Not only that, but the BP5K is raising even more awareness by broadcasting the event on the local news...that's wonderful! The Brain Power 5K was such an inspiring experience for me last year and I can't wait to race again this year! :)

Join Nikki today and register here!

Angi's Story

In 2003 I was diagnosed with a pineal brain tumor. My son was 6 months old. My first thought was “Am I going to get to see my son grow up?” Then I thought, “Where is the pineal gland?” It’s in the middle of your head at the top of your brain stem. My doctor immediately got me into see the neurosurgeons in Austin. They basically told me “There is no way we are going to touch you. You are going to MD Anderson in Houston.” So off we went. After meeting with the surgeon at MD Anderson we decided on surgery. 

The tumor was

successfully removed during surgery. I am seeing my son grow up. At the time of the surgery, my mother was told that I was only one of seven to have an actual tumor in this location, many cysts had been removed, but not very many tumors. We are very thankful to MD Anderson and their wonderful staff for their help.


 Join Angi's Team and Support her here!

Register for the Brain Power 5K here TODAY!

Iram J. Leon, a survivor story on the BP5K

Every once in a while, the universe is kind enough to give you a place in the middle of messes, where everything makes sense, even if it's just for  few moments. For some of us, it's in ceremonies, in music, in relationships, at events. For me, for the last few years, many of those moments have been in running. And that may not be true of any 5k more than the Brain Power. 

When my cancer journey started, I woke up in an ambulance after a grand mal seizure the day after I'd come in first in a running workout. I would be diagnosed with grade II diffuse astrocytoma, a rare brain cancer. Immediately running would become my therapy, sneaking out of the hospital the day before the biopsy for an 8 mile run and putting off brain surgery to run a marathon.

However, after brain surgery, when some things hadn’t gone right, I was sitting feeling sorry for myself. My friends and family were shocked that I was missing more days of running than I was putting in. But by the kindness of the universe on my very first birthday a few months after the surgery, 8/8 an email arrived to my running group’s list serve announcing the Brain Power 5k, Austin’s first ever race raising money for brain cancer research. I signed up, started training and raising money. My friend Egon who would come with me would tell me I needed to try to win but while there are few races where I’m not up to giving it what I had… I didn’t know if I was in shape to make that any type of goal.

However, when race day came, I arrived there knowing I’d been the leading fundraiser and at that time the most money I’d ever raised for a charity. The race would go on and to both my shock and happiness; it would be the first race I would win since college, almost a decade before. I would also meet the race director and other survivors who I’m still in contact with. Some of us have stayed in touched even to the point of being in each other’s house. Those connections helped a journey that often feels so alone, one that we can share and somehow be alone together. And no matter what else had gone wrong before the race, everything that went right at the Brain Power 5k helped me realize it was nowhere near time to hang up the running shoes. 

 

But there was still something to be learned because that first year, I took only one friend with me. So when the second year came around, I helped put together a team, the Scarecrows (if I only had a brain). We started fundraising earlier with more conviction, and I was privileged to serve on the committee that helped organize the race. Despite hitting a higher quantity than my first yer, I would take second in the fundraising that time around. During the race itself, because brain surgery has left me with some spatial orientation issues, I would make a wrong turn and would run extra and would come in further back than I do in almost every race. While I’d love to admit that my initial reaction was just to laugh it off as a good sport, I pouted for a bit. But a little while later, as my teammates came in and received awards, I realized this was better than whatever place I got at the race. Also, just as importantly, this was the first race in my entire life that my daughter Kiana and my mother had ever done. So it went from being a personal victory to being a friends and family thing… and I realized those kinds of times mattered to me a whole lot more than mile splits.

 

The third year of the race, I was still helping organize and was honored to be named as one of the first honorary chairs. Once again, we would pump up the volume, get a bigger team and raise more funds. Still showing the progress of the race, even with more funds, I would take in the 3^rd year, third in the fundraising. But there were teammates there that I had met years before and

some a few weeks before from running marathons and Spartans. It was and is comforting to know that the army against brain tumors is getting bigger and gives me more faith that brain tumors may still be ahead in some areas but you better believe we’re getting closer to victory. It was one week after I ran a marathon and despite rugged legs, I would manage to stay on course and take 3^rd place and win my age group. Two and a half years into brain cancer I was running a faster time a week after a marathon with cancer than I used to without cancer or a race the weekend before. And afterwards we held a party where you better believe we celebrated with conviction.

I can’t quite think of a race that year after year grows in meaning, in fundraising, in connections. The organizing committee gives me a hard time about my being single and suggests selling off a date with me as a fundraiser or that I should propose inside the inflatable brain that we always put out on this 4^th time at the race. While that’s not likely to happen, the reason the race keeps getting better for me and lots of others is because those who organize it realize that the reason we fight cancer is to keep hope, joys, connections, faith, the meaning of life going for those of us who got an unfortunate turn with a piece of our mind. 

Perhaps that the Brain Power 5k for me will keep getting better will not always be the case. I’ve certainly met and shared stories and tears with those who are there in honor of those who have passed or those who are there in honor of someone who doesn’t have the capacity to run it themselves that day. While my cancer and seizures have finally gotten under control (I had to get rides to 2 of the 3 due to a driving restriction), I don’t work off the assumption that they always will. I personally am one week away from my MRI as I write and believe you me, I hate being in the MRI machine, it is to me the loneliest place in the universe and still where I appreciate friends and family the most. So the brain power 5k will be one of the happy thoughts in that machine trying to focus on that the fear of the unknown is semi irrelevant since the future really is always unknown.. And well, if the pattern of the Brain Power 5k is indicative of something is that with some effort and heart even with a damaged brain, the unknown future may turn out to be better than we dreamed.

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A survivor tells in her own words...

I just wanted to say a few things about the race.  First, I am a brain tumor survivor.  I had my tumor removed in 1998 at 24 years old.  Had 3 months of rehab and still have a pretty useless right hand in fine motor tasks.  I write left handed now, balance issues and double vision without glasses.  Anyway, I never actually THOUGHT about what I went through.  Never.  When I walked on the field at the BP5K, I started crying.  I didn’t stop.  There I was with my hubby, whom I met several years after my ordeal, and 4 young kids.  Why was I in tears?  Because I couldn’t find any “survivor” shirts.  I eventually spotted a few, but that inspired more tears.  Why weren’t there more survivors?  Why am I a survivor?  It was something I had never actually thought about.  I was talking with my sister after the race and telling her that I felt so lucky to be in the position that I am in.  I RAN the race.  I had a successful career after the surgery.  My life isn’t THAT impacted.  Her response was “so you are less of a survivor?”  Anyway, participating in the BP5K has stirred up a lot of emotions and issues I had never addressed.  Thank you for organizing this amazing race and providing such an amazing opportunity for survivors and those impacted by such a terrible disease to connect.   I will be at the race in Houston in March and definitely at the 4th BP5K next year.  This time, my hubby and kids will participate as well.  It was an experience I cherished and I hope that I was able to give hope to others.  You can have a brain tumor and live. 

   

What an amazing weekend.  Can’t wait until next year!

Jenn Otto