Co-Chair Share from Whitney White

Howdy y’all! 

I am super excited to write this blog entry just a few short weeks away from the big 5^th anniversary race.  What an honor!  Well, I will start with the basics: name, age, life story.  I’ll shorten up the latter to the last 3 years because that is when my life got really interesting! 

My name is Whitney White.  I am 36 years old.  I am a brain tumor survivor. I am a mother of 2 beautiful girls ages 4 & 3.  I am a wife that works full time with a husband that works more hours than I can tell you.  We keep afloat with the help of our family.  I was diagnosed on July 31, 2012.  I will remember that day forever and not because I found out I had a softball size brain tumor.  That is also the day I gave birth to my second daughter.  I had complications throughout pregnancy that I just chalked up to being pregnant. During the summer. In Texas.  I had completely lost the use of my right arm and leg.  The baby was sitting on a nerve.  I was losing my train of thought mid sentence. Pregnancy brain.  All pregnancy symptoms that they said should go away after I delivered.  Well, they didn’t.  They got worse.  I had an “episode” in front of my other daughter and my sister shortly after I delivered.  It was like I just got stuck and had to reset.  My sister handled it very well; she didn’t make any facial expressions or express any concern to my face.  She would be great at poker.  Once I turned my back, she grabbed my husband and the nurse and told them exactly what happened.  Once I was in my room, the nurses started checking me for a stroke.  By 2:00 pm, I was doing a CT Scan and by 5:00 pm I was told that I had a softball size mass on my brain.  2 ½ weeks later, I had my first brain surgery. I was told afterwards that my meningoma was attached to my saggittal sinus. That is the main blood vessel to and from the brain. It was also suggested that it could come back as he HAD to leave a sliver of it there and there was no way he could get it all. As my doctor so eloquently put it, if he touched the sinus, I would not get off the table and my husband would not like him very much.  How’s that for bed side manner?  No, I really love my doctor.  He is very black and white.  No bull.  Tell me like it is.  So, here I am.  I have a 19 month old and a 2 ½ week old and I had brain surgery…just another day in paradise. 

Fast forward to March, 2014.  I did my yearly obligation and went and had an MRI.  The pictures showed some growth.  After several appointments with a radiation oncologist and my neurosurgeon, we decided I should wait another 6 months and repeat the scan.  In October, I did and it showed 30% growth from March.  It was time to make a decision.  I decided to have another surgery in February, 2015.  My hair had just grown to shoulder length.  Ugh….another bald head for a couple of weeks.  Surgery went great.  Hey, I have the easy part.  No stress, just go to sleep and wake up and have people waiting on me!  In June, I did my 6 month MRI and the doctor who looks at the scans, which his occupation name escapes me at the moment, has now labeled my tumor is inoperable.  The tumor itself is now wrapped around the sinus.  So, what’s a girl to do?  I just recently spoke to the radiation doctor and we’ve decided to wait 6 months and see how the tumor is doing and go from there.  You know, see if we can get it anything.  A drink perhaps?

6 months after my first surgery I found Kelly and the Brain Power 5K.  What a relief.  Here was someone that I could talk to who had had brain surgery.  Just like me.    We were brain buddies!  Then she introduced me to other brain buddies!  Once you have an “extreme” common denominator with someone, you become instant family.  You know what, let’s drop the instant part because that’s only a timing issue. Family. That’s what the Brain Power 5K is to me.  I have made so many friends. I care about them.  I care about their treatments.  I care about how they are doing.  I care about the organization. 

I’m a talker.  Some might suggest that I do this at a volume not meant for human ears.  So, when I was asked to be the Co-Honoree for this year, I was honored. In fact, I cried a little. Ok, ok, a lot.  I cried a lot. What an honor!  This feeling of being able to do what I love the most, talking very loudly, about something that I love, the Brain Power 5K!  I can shout from the hill tops about the BP5K!  You know, as long as nobody is watching me.  I have a fear of public speaking in which the BP5K has helped me overcome.  Well, not entirely overcome. I’m still nervous as hell but I power through it.  Babbling along the bumpy road of talking in front of a microphone, sometimes even in front of several hundred people, on a jumbo-tron.   I try to focus on  the fact that ultimately maybe someone out there might be going through the same things I did and has no where to turn to get support. I’m not suggesting that I’m like a miracle worker and all the angels from heaven come down and shine their light on me but I like to think that maybe a little reflection from an angel’s horn somehow ends up on my head at the right moment.

I will be running around on Sunday, September 13^th handing out all my team shirts and packets.  You know, I can never be pro-active and do things in advance.  That’s not how I operate.  I will be reflecting on all the good things that can come from this, that HAS come from this.  I am blessed.  I am healthy.  I have amazing friends.  I have an amazing family.   To show my nerd side, “Family is all that matters.” – Walt Disney.

I fight brain tumors. What’s your superpower?

We are thrilled to share a post from a guest blogger today; one of our Powerful People - a pure source of inspiration and brain tumor survivor Mindy Michaels!

I was told at age 10 that my mom had breast cancer and 7 years later when she lost her battle to cancer, cancer had already become an old, familiar, yet detested presence in my life. I knew and maybe even expected that with cancer in my family that I would one day face a diagnosis and promised myself that I would live a healthy lifestyle in order to not tempt the fate of nature and genetics.  

As I started a new job and a new stage of life in Austin with my the love of my life, I never expected that initial lapses of concentration that I assumed were cedar allergies or a response to my new and changing environment were actually partial-simple seizures that warned of a growing tumor in my right frontal lobe.  I certainly would have avoided driving if I had known that these short “episodes” were, in fact, seizures and not a lack of Vitamin D as my primary care physician first guessed.

Throughout the past six months, I have—like many other survivors—endured surgeries, rehab, IVF, radiation, and the chemo.  Even after almost 6 months since my diagnosis (2/3 anaplastic oligo), I am still uncovering the tender, emotional scars that have endured from these treatments as I navigate my life while continuing treatments and medications that in the long-term help me, but in the short-term make life difficult and entirely unpredictable.

Running and yoga was my therapy prior to my diagnosis.  After all, the week before my diagnosis I had run over 3 miles with an old friend in DC and I ran my first and only half marathon in May 2014 with a growing and silent tumor.  I knew that running again would be a sign of my healing and feeling whole after my diagnosis.  I knew that if I could run again and continue to use yoga and meditation to reinvigorate my body that I would be okay.

The run has been my goal, my test for myself that I am healing, fighting and ultimately beating cancer; but my strength has been my network of support and the kindness and beauty in those that I love that continue to surround me.  I knew my family, and particularly my siblings and my Dad would come be my support, but I could have never dreamed of the outpouring of love and support I received from my extended family and friends (who I refer to as my chosen family). Moreover, the tenderness and kindness from my medical team—from  my nurses, to my doctors, to my surgical team, to receptionists at the hospitals—has continued to inspire me and leave me feeling forever grateful to them and their commitment to their patients.   One of the utmost impactful feelings of gratitude I have felt is for the network of survivors and caregivers who continue to fight their own battles as well as the battle for a cure. 

Serendipitously, the weekend I was released from Methodist Hospital in Houston, the Dr. Marnie Rose Foundation was leading their conference in partnership with MD Anderson for patients and their families (a conference only held every 2 years).  I was timid to go to the conference since I didn’t want to be overwhelmed by the information so soon after learning that my treatments were to continue.  I was greeted with open arms and warm faces by Lanie Rose, Sallye Wolf, and young adult survivors who I quickly bonded with and continue to lean on.  

It took me a long time to decide how I would talk about my diagnosis with the public world (Facebook or otherwise).  I was not sure how I would feel sharing my story or if I was ready to tell my story to a wider circle of people.  The outpouring of support and generosity to the BP5K and Dr. Marnie Rose Foundation cause after a simple Facebook post and some honest storytelling, continues to amaze me and be a source of strength and inspiration. The connections to other survivors has been critical to my healing process and I can only hope that the connections I make with other survivors allows me to pay it forward in some small way.  The connection to the survivor community, the empowerment I feel from running, the opportunity to pay it forward, the unending love of my support network and the courage and strength I gain from other survivors- these is my reason to run and to keep running and fighting. These are my reasons to keep living and fighting statistics and to join others in their fight to do the same.

Beautiful Note from Survivor, Becca Harrison, on the Brain Power 5K

We receive absolutely amazing messages from you all and sometimes they just need to be shared. This one in particular, with her permission, I felt needed to be read by all of Brain Power; as each of you reading this make it happen. Please take a moment and read the affect you have on survivor Becca Harrison. Feel the power you create in others by participating and supporting the #BP5K.

From Becca: 
I just wanted to touch base with you and let you know how much you and your team are appreciated!

I started having seizures a couple of months ago and honestly, this has been tough. I want to say this has been harder than fighting my way back from the brain tumor because I was finally cleared in January, at my 2 year check-up, to go back to work as a flight attendant...only to be sucker punched by seizures that I NEVER expected!

You may have read my story on FB (my family set up a go fund me account with some details, not all of course) so I won't go into great detail. I just simply wanted to say that the BP5K is once again my goal of completing. "You" gave me this goal last year after relearning how to walk, amongst many other things, and once again have given me this goal to obtain after this horrific battle with seizures.
  

My stamina and strength are gone, again, so I've got a long way to go, but at least I can still walk!! One day at a time, right?!?!

I had seizures for 33 days, sometimes up to 30 a day (needless to say I was in the hospital for a while), and have started my 90 day countdown! If I remain seizure-free today, I will have 5 consecutive days under my belt!! I want to drive, cook, stay by myself, swim, take a bath, be independent, run the 5K, etc!! Only 85 more days to go!! Ha! One day at a time, right?!?!

Anyway, I just wanted to say that I appreciate you and everything you do. You, and your team, touch so many lives that you may not even know about. 





I wanted to thank you, again...I feel like giving up sometimes, but I know I can overcome this just like I did the brain tumor with strength, courage, determination and faith...and a goal!! BP5K!!

Sending much love,
Becca
***********************************

Exciting times with the BP5K

It was quite an eventful weekend for the Brain Power 5K and myself as the director of the BP5K. As you probably know the Austin Marathon and Half Marathon was this past Sunday; put on by the unbelievably talented team at Conley Sports. Their team kindly invited my husband and I to their VIP Reception for the Austin Marathon the Friday before the race. This is always a beautiful evening held downtown that we thoroughly look forward to and are so appreciative to even be invited.

Kelly Bolinger w/Mercedes Orten, Race Coordinator for the Cap 10K

The night progressed with fun conversation, meeting new friends and the anticipated race excitement! Then it was time for John Conley, the Race Director of the Austin Marathon and CEO of Conley Sports to begin his program for the evening. He gave an amazing tribute to an extremely accomplished Veteran that had lost his hard-earned medals over the years and presented him with new ones! It was very touching and had the entire room covered in chills or with tears in their eyes. Mr. Conley then went on to introduce the Mayor of Austin, Steve Adler, and give out many words of thanks including their presenting sponsor Freescale.

Here I am in complete shock.

Mr. Conley then began speaking about a very special award, called the David Doolittle Memorial Cup. He described this as the 'highest honor awarded by the Austin Marathon organizing team.' We were in the back of the room continuing to enjoy the presentation and wonderful night. THEN, I hear Mr. Conley go into more detail about this award...and that this years recipient was diagnosed with a Ganglioglioma II in 2006 at the age of 28 and had started the Brain Power 5K! I could NOT and still can't believe it!

Kelly Bolinger and John Conley

 I do not want to share this with you to 'toot my own horn', but to congratulate YOU! The Brain Power 5K was created after I survived a grand mal seizure, a diagnosis of brain cancer, brain surgery and the long recovery that followed.(follows) I only had the idea and was personally scared to death that nothing was being done here to help families facing brain tumors. I wanted to change that. But you, all of YOU are what makes the BP5K the amazing success that it continues to be! YOU are the reason that our fundraising has grown by 337% in only 4 years! And you are the reason that the BP5K has amazingly raised over $241,000 that has been donated to brain tumor research and patient programs in this short time! YOU are truly amazing and I congratulate you all!! There is everyone to thank in making this happen including our generous Sponsors, Volunteers, Team Leads, Planning Committee, Survivors, dedicated families and teams and all of our participants. Thank you all.

Article in the 2015 Austin Marathon Guide

Please continue to share the Brain Power 5K with all of your friends and family and anyone that will listen. Let them know why it is important to you, why they should join you on race day and why it is so important to fund-raise for our worthy mission.

This year will be our BIG 5 Year Anniversary Race, so you don't want to miss it!






Mark your calendars:
-Saturday, May 2nd: 3rd Annual Brain Power-thon (all brain tumor survivors are invited to join as a team to complete a marathon distance, relay style walking/running)
-Monday, May 11th- BP5K Kick-Off Party with The Rankin Twins at the Rattle Inn
-Sunday, September 13th- 5th Annual Brain Power 5K at the Cedar Park Center!!
Check our Events Page for all upcoming events!

I can not thank John Conley and his team at Conley Sports enough for this wonderful recognition and genuine enthusiasm in our necessary mission. It is with encouraging hearts like yours that we are able to reach new and higher achievements. I am beyond grateful and truly appreciate this incredible award, in honor of the late David Doolittle and his highly respected legacy. Thank you so very much.

~Kelly

Kelly and John Bolinger

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!