Featured MassKicker

Bob Gibbs

Let me go so that I can kick some brain tumor mAss!

Bob Gibbs is one focused mAss Kicker.  He and his wife Barb created the outstanding organization Miles of Hope .  He has faced many obstacles, but has managed to improve himself along the way. He is leading a very busy and fulfilling life.  We were lucky to catch him in one place.

mK:  What/ when was your diagnosis?  How did you find out about your diagnosis? 

BG: I was diagnosed May of 2004 with an Oligodendroglioma Grade II.  A trip to the emergency room for “visual trouble” and numbness in fingers and arms led to blood work, CT scan, MRI scan, MRA etc.

mK:  What were your symptoms? 
BG: For a couple weeks leading up to this point, I was having headaches which were fairly frequent, and was having what we know now to be visual seizures.  I lost part of my vision from the 9:00 – 12:00 area, if you pictured your visual field as a clock.
mK: Wow!  Vision is probably the most important of all the senses.  Most of our memories are based on remembering what we saw.  What are your favorite memories?
BG: Favorite memories in my life include growing up in New York hunting, fishing, and snowmobiling, my marriage to Barb, my wife, and birth of our youngest son Dylan.

mK: So, why did you start “Miles for Hope”?
BG: We started Miles for Hope because other organizations out there wanted to take administrative fees off money we wanted to raise and donate to fund the expansion of vaccine based clinical trials for brain tumors.  Also, other organizations that provided “flight assistance” typically used small planes, which I prefer not to fly in, plus trying to get flights to coincide with vaccine injections was difficult.

Since my tumor was only a Grade II, we thought it was nuts to have to wait until it was a Grade III to qualify for a vaccine.  Therefore, we started Miles for Hope so that others could raise funds without the fear of an organization “skimming” off the top, and to provide an avenue for travel assistance to those who qualify.

mK: Yeah, it sucks that you have to “qualify” for those vaccines.   We’re glad someone is addressing this.  So, who do you look up to?  Who is your hero or heroes? 
BG: I admire the strength and determination of Lance Armstrong.  Also, his organization is doing great things for cancer, in general, but not specific to brain tumor clinical trial expansion.

mK: Mr. Armstrong is a very driven man.  What motivates you?
BG: Finding a cure for brain tumors, providing information and support for brain tumors, and trying to find a cure for this disease motivates me.

mK: When was the first time you felt like yourself after your diagnosis?
BG: Felt like myself?  I still don’t feel like myself since the diagnosis.  I am not the same person I was, and still have visual deficits resulting from the tumor and surgery.  I will never be like I was prior to the surgery, but in ways I think I am better since I have found a mission that is severely needed.

mK: You are right.  Survivors adapt, but you can choose to evolve or become a bump on a log.  These experiences change you!  What makes you laugh, cry, angry?
BG: The diagnosis used to make me cry and used to make me angry.  I have found that it’s quite funny that I have been left with these deficits and that I continue to be challenged in life, ever since birth.  I continue to be challenged in life, and I feel that it was always the overall purpose I was placed here on earth.

mK:  You seem to be constantly evolving and adapting.  What was your toughest challenge during or after treatment?  How did you overcome it?
BG: My toughest challenge before, during and after treatment has always been my vision.  I was born blind in my left eye, the optic never fully developed since I was born premature.  The brain tumor was in the right occipital lobe, which affected the vision in my right eye, the only good eye that I have.  The first surgery took about 25% of the vision in my good eye, and 2nd surgery took another 25% of my vision, only leaving me with the center to right peripheral vision.  This continues to be a challenge, especially with the fact that my remaining vision is blurry, and have trouble with face recognition, and knowing where I am at if riding in a car.

mK: OK, changing gears… What is your guilty pleasure?
BG: I’m a male.  My guilty pleasure is my wife!  (Am I allowed to say that here)?

mK:  Hahaha!  You are a very lucky guy!  You shouldn’t feel guilty at all.  Random Question… If you could walk in another person’s shoes (from any era) for one day who would it be? 
BG: If I could walk in any one else’s shoes, I would have to say it would be the head of the FDA.  I would make it a focus that vaccine based treatment receive special handling and expedition so that lives could actually be saved, and symptoms not be “treated” as this is what our society and healthcare are treating.

mK: What would you do as the Head of the FDA? 
BG: I would make it a focus that vaccine based treatment receive special handling and expedition so that lives could actually be saved, and symptoms not be “treated” as this is what our society and healthcare are treating.

mK: Creative.  We were expecting Superman, Tom Brady, or something… What do you like to do in your spare time?
BG: Spare time?  What spare time.  I currently have no spare time since my life is dedicated to making a difference I finding a cure for brain tumors.  If I had some spare time, I would like to spend more time on family vacations.  Once the kids graduate, I would love to move to Colorado in the mountains, and have property to just kick back, run Miles for Hope, and live life.

mK: That sounds great!  What are you doing now?
BG: I am currently preparing to leave for another vaccine injection at UCLA.  I travel to UCLA every three months to receive a vaccine injection so that I never have any sign of a brain tumor again.

mK: Good Luck!  Any advice for people that get daunting diagnoses?
BG: I would like to encourage anyone diagnosed with a brain tumor or cancer, to get a second and third opinion.  Also, it is critical that people know what treatment options are available, and that they look into clinical trials.  If you look back in history and see what has cured disease, you will notice that it’s always been a vaccine, not a pill.

mK: Hmmm… Thanks for sharing.  Tell us something people probably didn’t know… anything.
BG: Something that most people probably don’t know, or don’t think of is that a pill has never cured disease.  It has always been a vaccine that has cured disease.  What happened to mumps, measles, polio? Hmmm, vaccines have cured and prevented them.

mK: Any parting words for all the mAss Kickers?
BG: Parting words:  Yes, let me go so that I can kick some brain tumor mAss 

Thanks for spending time with us Bob.  We’re looking for great news and more clinical trial resources from you.  Please checkout Miles for Hope .  They have a very unique virtual candle light vigil for brain tumor awareness.  Now go spend some quality time with your wife!

  • Auth

    Hi JohnI have printed your story, and put it in our Patient hadboonk, given to us our first visit to the Pencer Brain Tumor center. I read it, re-read it and read it again. I have started to re-read it again..over and over.My husband, Steve, 44 diagnosed last June (07) with GBM IV. His tumor was de-bulked, the six week radiation and chemo treatment, followed by 5/23 chemo cycles. I’m sure you have kept up to date, knowing the chemo of choice is now Temezolomide. He was also in a study program At the start of the third cycle, the wonderful clinic nurses noticed Steve was short of breath, his heart was racing, his colour not good. He had developed Congestive Heart Failure. However, the good news after the first two cycles was the tumor had shrunk significantly (the only type of shrinkage any man wants to talk about). They took him off the investigational drug .kept him on the chemo and after cycle five, his MRI showed tumor progression 50% of what was there three months ago. (although, I keep telling him 50% of very little, still in not that much) But enough that Dr. Mason changed his chemo to CCNU.I remembered you saying how violently ill you were on the first cycle. Steve was as well, his first cycle of Temezolomide. After that..he was fine. So on Friday, when Steve was to take those two greenish pills, i made sure his Dad was at our home, ready to help him out, if he needed. But .he’s not been sick. Of course that’s scared me, prompting calls to Dr. Mason’s office ‘he’s not sick, he’s not sick..is it working?’ Wendy, it’s fine calm down they say. I know how you reflected on that first cycle thinking perhaps there may have been a lot of anxiety and expectation of illness, and perhaps Steve being a veteran of chemo so far he was without expectation. John, I’m so scared. Steve didn’t respond to the new wonder drug..Temodar, I just hope he responds to the old fashion stand by. He’s not been able to return to work, since the diagnosis. The steroid, and study drug, then heart medication have prevented this. We received word last week that Steve’s heart is doing much better even some medication deletion which felt good then whammm .the monster in his head is growing. A complete reversal to the first time’s good news. So lets hope third time lucky..heart/tumor all doing well. His spirits are feisty, he’s frustrated and angry, he’s scared and afraid. Probably the latter two he’d rather I not share with people .but I wish I could help. I pray so much John, every day, when i’m alone in the car, alone in the bathroom, alone at the washing machine I’m even saying prayers while writing to you. We’ve not been a religious family ..a faithful I will say, and I believe God does hear, I just pray that Steve’s health is one He is willing to grant. Thank you for the updates I like to read the progress, please keep us informed. Oh and on another I feel a little connection to you note the flowers that you were going to purchase that Valentines Day in 1997, were probably at one time in my warehouse. I work for an importer of fresh cut flowers, have since 1991. We more than likely distributed those flowers to the wholesaler, who would have supplied that retailer you were going to stop off at on Front Street. I still work here. Bless you and your family John, you are an inspirational miracle for me to hold ontoWendy Mendham, Steve’s wife

  • https://www.facebook.com/pages/Tumors-Suck/145877928814836
  •