You’re Not Alone: William’s Story

Weathering the Storm

William    |    Grade 4 Glioblastoma – Right Frontal Lobe    |    Diagnosed at Age 33

A little introduction first. I’m a thirty-six year-old married father of two beautiful little girls and husband to a beautiful wife. I also happen to have a glioblastoma. But most days, thank God, that doesn’t affect me much.

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First Signs Something Just Wasn’t Right

One Saturday in 2012, less than a year after my younger daughter was born, my wife, Eda, left me with the girls as she went to work as a physical therapist.

A little while after I got up and was playing with the kids, my head started pounding like I had never felt before.  I had to lay down in the living room while watching the kids play. I vomited at least twice before I moved back to the bedroom. I took a bowl with me, because I was pretty sure I wasn’t getting back up before the next bout hit me.

I was too sick to call my parents, who live a mile away. Eda called to check on me, and she knew there was a problem. She called my mother over to handle the kids, and I went to sleep. During the day, if I so much as moved, I would vomit again. Then, by the late afternoon, it started to dissipate and I was back to seventy-five percent or so before Eda got home.

I passed it off as a bug that had come and gone that day. Then a month later, it was a carbon copy of the first event, except I was able to make a call for help that time.  But I’m a tough guy – at least that’s what I tell myself – so I could handle it.  I could weather this weird, fluke of an occurrence. Anyone reading knows it didn’t play out with it just going away. But I AM weathering the storm. I’m still here writing this story!

This kept going on for several more months, always separated by at least four to six weeks, but Eda finally had enough. She made me schedule an appointment with a neurologist, saying, “What if it’s a brain tumor!?!” I replied, “It’s not a brain tumor! You’re always so paranoid!”

So, I went to see the neurologist and administered neurological testing. He found nothing wrong, but scheduled an MRI just in case on July 20, 2013. By the following Tuesday, I called the doctor to find out the results. Instead of him saying, “You’re right, don’t worry about it, just take the medicine to treat the symptoms,” he said, “I need you to go to the emergency room tonight and check yourself in.” Less than two days later, I was having a golf-ball sized tumor removed from my right, frontal lobe.

Transferring to One of the Top Cancer Centers

Shortly after I recovered from that surgery, I transferred treatment to one of the top hospitals in the U.S. – MD Anderson Cancer Center. The doctors encouraged me and Eda to attend a patient conference, and I believe attending that conference is probably the most important thing I’ve done in my treatment. They also told me that everyone’s tumor is his or her own, and statistics don’t apply to everyone.

I did have radiation and chemotherapy treatment and they did get the disease into manageable shape.  I’ve been through over a dozen MRI’s since the surgery, and I’ve heard the same magic word each time – stable.

They found a genetic marker in my tumor that is an excellent prognostic indicator.  I have not received any treatments as part of a clinical trial, and if my luck continues, I may not need them.  But I’ll still do what I can do to make sure I’m continuing to fight the disease for myself and others.

I’m lucky to be treated at one of the leading cancer treatment and research facilities in the world.  The doctors know what they’re doing, and I’ve been lucky to be part of it.  They are the ones who take care of the medical aspect of the disease.

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Fighting the Disease Mentally

But there is something I can do besides comply with their recommendations. I think this is the aspect of my life that has changed most drastically. I can fight the disease mentally. I don’t have to think this is the end. And I don’t.

Stepping back to the hospital bed the morning after I checked into the hospital, the neurologist walked into the room and told me, “Well, we see some mass effect on your scan.” I had no idea what he meant.  “We think it’s most likely you have a malignant brain tumor.” He said it almost off-handedly.  Maybe he had become accustomed to telling people this, but I certainly was not ready to hear it.

I didn’t really have enough time before surgery to account for what I thought it meant. But after surgery, I started reading and hearing statistics. Statistics that say seventy-five percent or more of people have succumbed within eighteen months. All kinds of things went through my head. “Will I ever buy another pair of shoes? Will my daughters remember me?  Will the baby ever know me?”  Stupid things. Morbid things.  Short-sighted things.

My doctors and nurses at MD Anderson told us that the people who come in with a desire to fight the battle and a will to live do so much better than those who give up. Our doctors became the best source of information we ever came across – some of the most brilliant minds in the world who work on brain tumors every single day. They helped plant that seed of hope that was so difficult to see at the time.  And it’s been more than two years since we met.

Finding Support is Important

And here is what I think is so important about a website like the one on which I’m being asked to share my story. People are important. People who can understand what you’ve experienced in a way the people who love you the most, through no fault of their own, simply cannot. I met one of my good friends at that conference, and I talk to him regularly about everything besides cancer. Football, family, daily situations, you name it.  But he’s the guy that first asked me, “No, seriously, how are you handling this?” And I knew there was no lying to him.  He had been there.  He knew.

I don’t often lean on the support I have, but I know it’s there. A group of at least four families from that conference still meet for dinner every couple of months, and it grew this past year to include a few more. I too wanted help someone else, the way my friend had for me. I hope those friends look at me to say, “I’m glad he was there, because he showed me it’s possible to get past this and live life on my terms again.”

If you are reading this and you have a brain tumor, or if your loved one has a brain tumor, my best suggestion is to find someone who has been through it or is going through it. Find someone who has gotten past the ignorance surrounding the disease.  Find someone who understands it’s not a death sentence. There’s no denying it’s serious. I’ve met friends who died from it.  It does happen.

Ask one of those people for their phone number. Give one of those people your phone number.  Don’t rely on Facebook for superficial support. Call someone. Actually talk to or meet a survivor face to face. Cancer patients are not scary. They’re not contagious. They’re people, and they just happen to have a horrible disease. Let’s cure brain cancer.

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