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






7 comments:

  1. Every week I come on to this site and read through your wonderful story. I and my partner are just at the start of this journey. Thank you for having this site.

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  2. My husband was diagnosed on October 29, following a craniotomoy. The effects of surgery have left him pretty much wheelchair/bed bound with very limited mobility. He is making some progress in physical therapy but his quality of life is very low. He his dependent on me and the caregivers for so much. We have two lovely daughters, ages 11 and 14, who really don't understand the ramifications of this diagnosis. I am so fearful of being a widow before my time. The thought of being the soul caregiver of my children terrifies me, although I do have friends and some family.
    I try to take one day at a time, which is what everyone advises me to do, but how can you when you know the future is so bleak?
    He is in his 5th week of radiation and is just back on Temodar after being taken off after low platelets.
    Thanks for starting this site, which give me some hope, albeit very little.
    Wishing you continued health now and in the new year.

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  3. I am also a glioblastoma multiform survivor and it has been heartening to read that Jeff has survived even longer than I have.
    In September 2010, age 48, I suddenly stopped being able to eat or drink and lost 15 kilos; despite this, I was constantly nauseous and longed to either vomit or excrete. I had no headaches, but since my weight loss was becoming life threatening, as a last resort I was eventually given an MRI, this revealed a stage 4 tumour the size of a grapefruit in my right frontal lobe. My family were told that I had no chance of surviving it, but they agreed to an immediate surgery during which the tumour was removed. About a week later I slipped into a coma as it turned out that the tumour had totally re-grown. I was immediately placed on a combination of chemotherapy and radiation. I also had acupuncture, various homeopathic remedies and a special anthroposophist massage called (forgive my spelling) something like ‘rhythmic inthrifing’. It is now January 2013 so I have lasted more than two years. I am not a special person and have no ‘secret medicine’. My family and friends have been fabulously supportive. In terms of diet: I have been vegetarian for four years (for ethical reasons) and although I do eat dairy I try to only eat organic; I eat as much raw fruit and veg. as possible, don’t smoke and no longer drink coffee or alcohol or binge on chocolate. None of the latter involve will power, it’s just that since my illness I‘ve been instinctively repelled by them. I exercise as much as possible, though not as much as I’d like to, due to side effects of the whole trauma, these include: loosing 75% of my ‘field of view’ and my sense of direction and increased forgetfulness.
    I am now very happy. I feel blest, and deeply grateful for many things. Thank you for making this blog.

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  4. Hi. My husband was diagnosed in 2003 with an astrocytoma, has been through 3 operations, the last followed by radiation and Temodal. Now it has sadly developed to a GBM, operation no longer possible, radiation not an option due to he has allready got the max dosage. He is now on Temodal again, hoping it will slow the growth and maybe shrink the evil bastard. We will not give up the fight, thanks for sharing your story with us.

    Love, Lisbeth, Norway

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  5. My wife Michelle was diagnosed in 1997 with an Astrocytoma (Grade II/III) in the 16 years since she has lived a strong healthy life. We have two boys (8 and 11) and she has undergone 3 resections since the initial diagnosis.
    Sadly, by 2010 the tumor had made it's final transformed into a GBM (IV) and continues to worm it's way back into our lives. It appears that surgery is no longer an option, and she is allergic to Temodar, but she is still fighting and living her life with as much determination as ever.
    We are fortunate to live near Boston and some of the top doctors in the world, but recently things have gotten a little worse for her and while she is still remarkably healthy it is the first time she has shown outward signs of the disease, as a result I have turned to reading stories like yours as reminders of the hope and possibilities that are still out there.
    We have never lived by the numbers. There is no sense in doing that. No one would have ever said in 1997 "I'm sorry you may not live more than 16-20 years" ... but here we are at 16 and counting.
    You are a talented writer and story teller and I hope that you and Ted have many more years to tell it together. My wife's story is updated less frequently but can be found here http://www.caringbridge.org/visit/raposo

    Thank you and may you and Ted find the strength to continue your battle and inspire others well into his 90's or they find a cure :-)

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  6. our daughter was diagnosed with brain cancer (GBM) in Jan.2006 (age 34 then) and was given a grim prognosis of 3/9 months survival. To those who are a parent will understand that a piece of me died that day, how could they take my girl, such a vibrant young woman who was caring for her young son & husband. From that day we would & never accepted that her life would end. How can they (medicos) put us all in the same category, we are all unique as is my girl. It has been a hard road the first few years, she had surgery, radiation & chemo. To date she is doing great, she saw her son start high school, she always said I will be here to watch him start school, high school and get married and nurse his babies. I have no doubt she will reach her goal.....she is med. free, has 6 monthly MRI and to date there is no visible sign of tumour. I hope her story will inspire many others through her book, even if it is just one person, my job has been done.
    Cheers

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  7. Thank you for giving me (us all) hope. 11 months ago, after a craniotomy, they gave me 18 months to live; I'm going great and strong. I started a group on facebook to help me find out healthy ways to cure...Please join and we can all do this together. I am grateful for your knowledge. My group on facebook is curecancerkindly LOVE TO YOU! Judy Stephens

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