1. Our Story

Without a prayer

Introduction

I wanted to be 95 and senile when they told me my husband was going to die, but I was 43 and painfully coherent. Ted had terminal brain cancer. Doctors gave him three months to a year to live.  If the tumor hadn’t been removed, his life expectancy would have been two weeks.  They said two percent of patients diagnosed with glioblastoma multiforme (GBM) live beyond a year. This type of cancer is rightfully named the Terminator.  We were told there is no cure, and despite his longevity, we will never hear the word remission. What they said, shattered me. 

Two years prior to diagnosis

Fast forward almost 9 years, and Ted is still here.  Why?  For a long time we didn't know, but during a recent visit to his oncologist, she told us the likely reason. In 2006, Ted was part of a drug study using the drug Temodar in combination with radiation, after the surgical removal of the tumor. This was not the standard for treatment at that time.  For those who can tolerate the drug, this combination of treatment has been very effective.  Ted was at the forefront of the study, so he is also at the forefront of more and more patients living longer.  His doctor told us that they are seeing GBM patients still alive after three, five and like Ted, almost eight years past diagnosis. 

He has beaten extreme odds. But despite his longevity, they still won’t cut us any slack. Because he is at the forefront, they can't make any promises.  They say it’s still a matter of “when” and not “if” his cancer returns.   In my mind, I see the cartoon character the Tasmanian Devil grabbing us by the back of our underwear and dangling us over a cliff for the past eight years, snarling, drooling and slobbering on us as he swings us precariously over the Grand Canyon with a giant cancer wedgie.    

  In the midst of Ted’s radiation treatments, more tragedy struck.  Exactly four weeks after the doctors gave Ted his death sentence, his only son, Patrick, was killed in an accident.

Patrick

During a one month period in 2006, I was told the love of my life was going to die, and the only person who would ever call me mom, was gone forever.  Our health insurance had run out, Ted permanently ended his long time career as a physical therapist, and my part time teaching job, which paid a whopping $23,000 a year without benefits, was all we had to rely upon. I was gutted. 

  I started a website of hope about a year after Ted was diagnosed. When I first started researching his type of cancer online, I became distraught and vowed to never look it up again. First of all, if you Google a hangnail, you will inevitably find a website that will list death as a possibility. When I Googled glioblastoma multiforme, it was as if my computer screen went black, and the keyboard melted.

  Instead of never searching the web again, I decided there needed to be at least one site out there with a message of hope, so I created this site.  All I wanted to do was see at least one other person live beyond the time the doctors told me Ted was going to live, so I started  showing pictures of Ted’s birthday parties, and the yearly gatherings we throw to commemorate another year of survival. We also post the many photos we take as we tick things off our bucket list. By the way, the list keeps growing. That's something I never anticipated.

The response to our site has been overwhelming. People from around the world have found us and shared their stories. I can’t tell you how many times my phone alerts me to a new email, and I read a message of gratitude from someone in India or Israel or even a mile away. Sometimes people want us to call them, we always do. The most common question we get is, “What do you eat?” Spouses and loved ones want to know how I’m doing. Others want to know how Ted is doing cognitively. They want to know how much we exercise. The list goes on.  

For the most part, I think people need to find something that gives them emotional strength to get them through difficult times. For some it's religion, and for others, like us, we simply put our heads down and keep moving forward, tyring to enjoy as many hours or seconds that any of us might have. It probably hasn't affected the outcome, but it helps us cope, and at times that's all you can do. 

No one can definitively say why some people survive and others don’t. Someone once asked Ted how he was doing.  He shaped his thumb and finger into a pistol and pointed to the spot on his head where they removed most of his right frontal lobe. “I thought about blowing my brains out, but I knew I’d miss.” Humor, albeit dark, has kept us going.

 I was a world traveler before I met Ted, but neither of us had traveled in years.   My fear of flying intensified after 911 and Ted’s fear of missing work kept us grounded.  We moved a lot and were new to the Pacific Northwest. Ted’s tumor driven mood swings, and our new location left us without friends. Our closest family members were over a thousand miles away.  I suddenly missed them terribly.

Stanley (dog), Artie, Char and Patrick
Ted's 4 year cancer birthday party

I had a long list of fears.  Heights made me dizzy, elevators sucked the air out of me and although I never feared death, I did fear being the last one standing.  Buffets were no picnic either.  I am a human microscope.  If someone sneezes across a room, I can see the microbes pole vaulting toward me, implanting themselves into my sinus cavity. If someone touches their nose, I become a GPS tracker.  A map superimposes itself across my field of vision and everything they’ve touched becomes a red flashing light.  But this is one phobia I’ve decided to keep. Cooties are dangerous for Ted.  I am a cootie guardian. 

Ted on the other hand is the toughest man I know.  And I don’t mean the tattooed ex-con variety.  He’s just tough.  They split his head open from ear to ear and removed an orange sized piece of his brain then lit him up like Chernobyl for ten weeks and told him he was going to die.  Then he lost his son, and in the years since, he has lost almost all vision in one of his eyes and no longer has a natural adrenal system to fight off disease due to radiation treatments, yet he has barely whimpered and amazingly he goes on each day with a smile and a great sense of humor. 

When this all began, I spent more hours crying than not crying.  My tears didn't begin to dry  until there was a history of clear MRI images.  Having Ted as an inspiration has helped a lot too. His courage and strength seemed to have rubbed off on me, well, at least for now or as long as the MRIs are good.  He used to get MRIs every three months, now he's up to six months.   I can't say that I'm completely worry free at the moment, but I've learned to put worry off until I need to. 

So why is it that Ted is still alive? How do you keep moving forward in the face of devastation? We aren’t famous, rich or religious, but we now know how to survive a tsunami of sewage with a snorkel and a leaky mask.  I have a Bachelor of Arts degree in Behavioral Science and a Master’s of Arts in Education.  Ted was working on his doctorate in Physical Therapy after 20 years as a practicing therapist when he was diagnosed.  Through work and education we were well versed in coping skills.  Not only were we trained in them, we taught them, but nothing can prepare you for this kind of loss.  

Ted taking flight 2010

As I look back on this wild ride, we do do a lot of the things experts would suggest for a healthy lifestyle.   Is that what has kept him alive?  Who knows?  I think luck plays a big part in this game of life and despite this hell we have had to live through, we both feel damn lucky to be here. We were taken to the edge and left there. People will tell to you to live each day as if it were your last. I wouldn’t wish that on anyone.  It’s exhausting, but I can’t escape the fact, that we do love life and as cliche as it sounds, we don’t sweat the small stuff like many of my friends and co-workers do.

 On the morning of Memorial Day 2006, I’m embarrassed to say, I’d never mowed a lawn, paid a bill or filed my own taxes.  I was racked with fears and had almost no social life.  By that evening, life as I knew it would end forever.  We set out early that day to walk along the Columbia River but strayed from the trail and entered an alternate universe, landing on a planet called Cancer World, and in that world, I found a fearless version of myself.  I jump off of cliffs, swing from trees, and have returned to the skies again, traveling to as many places as we can afford. We are seeing the world again.  Best of all, I’m doing it with the love of my life.  We are so damn lucky.   

Fearless me- ten weeks past Ted's surgery
From fear of heights to swinging from trees