Share from Honorary Co-Chair, Destini Voelkel

“You have a brain tumor,” are the first words I heard when I woke up in a hospital January 2013. Those are words that I never expected to hear in my lifetime, especially not at 21 years old. I’d imagine hearing those words would be a life-changing experience, and in a way, they were. However, finding out I had a brain tumor was more of an answer than a question. I had started having grand mal seizures at age 15. The doctors could not find what was wrong, and I was labeled as “idiopathic epileptic”. I was put on anti-seizure medication, which controlled the grand mal seizures, but I would still have petite mal seizures every day, usually multiple times a day. I just accepted that and dealt with it for many years. Right after New Years of 2013 I got sick and stopped taking my medication for a few days. It was enough to induce a grand mal seizure, which landed me in the ER, which lead to getting scans. That’s when they found the tumor. After the doctor told me about it, all I could say was “Well that makes sense.” Now I knew what was behind all the seizures. There was an answer to all my questions and the next step was to figure out how to solve it. 

Long story short, they did a biopsy in March of 2013 and found out the tumor was malignant and in June 2013 they removed the tumor. I went through 2 months of radiation and 12 months of chemotherapy. As of May 1, 2015 I have been considered in remission for 1 year!

During all of this chaos I was connected with Kelly Bolinger and the Brain Power 5K. It was the first group I found that had people in my same situation, people that were supportive while actually knowing what I was going through. The Brain Power 5K is not only a great support system for those who are going through this, but also for the families and loved ones. The money raised by the Brain Power 5K goes to funding research for resources and finding cures for brain cancer and brain tumors. Participating and donating to this organization is a cause worth supporting! Had there been more research or resources when I was younger, it might not have gotten to the point where I had to be treated for cancer. 

Throughout my entire journey I have met so many wonderful, inspirational people. I have found a whole support system and even more reasons to fight this awful disease. The Brain Power 5K is a wonderful organization dedicated to making sure my story, and others’ stories, are heard, and advocated for. I am one of the lucky ones. As a 2015 HonoraryCo-Chair of the Brain Power 5K, I strongly encourage those to support the Brain Power 5K, their mission, and all they stand for. Every single person can make a difference, but as a team we can make that much more of an impact.

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.