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!

 

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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