I tell this story to bring up the idea of hope, even if unfounded, may have potential value.
Terry Fox is a true Canadian hero. However, I am not sure how many people from outside Canada have heard of him. In the summer of 1980 he set out to run across Canada to raise funds for cancer research. Terry lost one leg to cancer at the age of 18, but had beat cancer and he wanted to give something back.
Three years later on April 12th 1980 he started his ‘Marathon of Hope‘ at the opposite end of the country from where he lived by dipping his leg in the Atlantic ocean in St. John’s Newfoundland. His plan was to run a marathon a day as he crossed Canada (8,000+ km, 5,000+ miles) in the direction toward home in Vancouver and try to raise at least 1 million dollars. His final physical goal was to dip his leg in the Pacific ocean in Victoria, B.C..
My summer of 1980:
I had somewhat a unique perspective on Terry Fox’s run. Two months after the start of Terry’s run, in June of 1980 I was diagnosed with cancer at the age of 18. My testicular cancer had spread into several regions of my body, including a football size tumor in my abdomen, along with a grapefruit and two smaller orange sized tumors in my chest cavity. I am a fairly slim person so with a football in my abdomen there wasn’t a lot of room for the rest of the organs. The only reason I even went to a doctor was I couldn’t really stand much more than 30 minutes at a time without what felt like my kidneys hurting so much I had to sit down.
My first afternoon at the Vancouver cancer clinic they told me I had cancer (after doing a small biopsy of one of my tumors in my neck region (lymph gland) and started chemotherapy within two hours of stepping into the clinic. Wow, that seemed awful fast at the time. They informed me I had stage 4 cancer and that I had a less than 5% chance of surviving.
p < 0.05
The funny thing is when the doctor told about less than a 5 % chance of living I never ‘heard’ this statement. Even though my parents stood behind me when the doctors layed out the reality they heard them perfectly fine. It wasn’t until some 10 months later after I was out of the woods and the doctors retold me how serious things had been (and later my parents recounted to me the story of the doctors clearly stating I had less than a 5 % chance) that this information registered in me at a conscious level. Obviously, I blocked out the reality of what the doctors were telling me. And maybe this was the best thing for me. I was 18, closing in on 19 shortly, I didn’t even think it was possible for me to die. You know how many young people are - they don’t think they are ever going to die.
Less than 5% probability of surviving, and this was the projected estimate despite the fact that on average doctors overestimate (overly optimistic) about their patients chances (Christakis and Lamont, 2000: “Overall, doctors overestimated survival by a factor of 5.3″ (but this was not just cancer patients), Glare et al., 2003). I find it a little ironic many years later that 5% is of special significance for me as a scientist, with all scientists chasing the almighty p < 0.05. I ignored the 5% probability at the time and now, like every other scientist, my career largely depends on finding that p < 0.05 (however meaningful these numbers are is a subject of another debate).
Terry Fox made progress in his run across Canada, but initially he did not get much media coverage nor did he raise much money. In Vancouver he was covered on the news since we was from the Vancouver region. But despite all this he continued running a marathon each day, on his one good leg and his prosthesis.
But coverage and donations started picking up when Terry hit Ontario. On July 11th he had covered 3,523 km and reached Toronto and was greeted by a huge number of supporters. The country was rallying behind the young brave man.
Terry had this to say:
“…everybody seems to have given up hope of trying. I haven’t. It isn’t easy and it isn’t supposed to be, but I’m accomplishing something. How many people give up a lot to do something good. I’m sure we would have found a cure for cancer 20 years ago if we had really tried.”
Each night that I was well enough I would watch the news update of Terry Fox’s progress. I was not having as much success as Terry. My tumors had not shrunk despite the heavy doses of chemotherapy - they hadn’t shrunk one iota. I still had a football size tumor in my abdomen and a grapefruit and a couple small oranges in the chest cavity, intertwined with my heart and its blood supply.
The chemotherapy was pretty harsh. It started with 4-5 days of constant vomiting and steadily got worse with each treatment (2 days of IV chemotherapy treatment separated by 3 weeks of no treatment). By the 4th dose of chemotherapy the nausea and vomiting lasted for the entire 3 weeks. I couldn’t keep anything down for more than 10 minutes. Even straight water I would vomit up within 10 minutes. Twice I was brought into the hospital to get an IV just for the fluids. Basically, I don’t think I digested any calories for the entire 3 weeks. When I finally returned to the cancer clinic I told them I didn’t think I could handle another dose. They agreed (though I am not sure if they didn’t have other reasons to agree with me), and started me on a different ‘lighter’, less effective chemotherapy. My tumors still had not shrunk at all. Maybe at this point the doctors had given up hope and figured no use making me suffer any more.
With the ‘lighter’ chemotherapy I was able to eat again. One week later feeling much better I was in town and had to cross a street. A car came speeding forward so I figured I better break into a jog. As I took my first step I thought I was going to collapse to the pavement my legs felt so weak, but I made it across the street and avoided slowing the car down. I weighed myself that day, after a week of regular eating, and weighed in at 108 pounds, so my wild guess is that I had to be pretty close to 100 pounds at my lowest. Before starting my chemotherapy I weighed 137 pounds. I was literally a bag of bones - that is what will happen if you don’t eat for 3-4 weeks (and you start out pretty slim).
September 1, 1980:
While I was not fairing well things became far worse for Terry.
Terry Fox was forced to stop his run for his original bone cancer had metastasized to his lungs. I still vividly remember Terry announcing the news to all of us from a stretcher behind an ambulance as he got ready to fly back home to Vancouver. He had run 5,373 km (3,339 miles - which would have been enough to cross USA) averaging 23.3 miles per day - all on one leg. A huge telethon occurred 8 days after Terry was forced to stop his run and the entire country rallied behind his cause. 10.5 million dollars was raised in a single day (by February 1981 $ 24.17 million had been donated to the Marathon of Hope).
Terry underwent interferon treatment (the latest magic bullet for cancer at the time), and chemotherapy to try to treat his cancer. However, the overall consensus was that Terry did not have a good chance to survive. It was almost a forgone conclusion that he would not survive.
My friends and family worried about how the news of Terry would affect me. Terry was a young man and it sounded like he wasn’t going to make it so why would I be any different? Of course I had still not taken in the 5% chance of survival from the doctors nor how Terry’s situation reflected on the general reality of dying. And in reality things had gotten worse since then, since I hadn’t responded to the best course of strong chemotherapy. No shrinkage of the tumors and the surgeons could not operate on that size of tumor - there was no use in even trying. Additionally, a few complications had cropped up. My one lung was only working at 20% of the normal level. They had to do a small surgery to do a biopsy of lung tissue. They first thought it was due to the chemotherapy, but later concluded it was likely due to croup disease, which I had several times as a very young child (even with one lung working at 20% later in my life I did manage to run a marathon and complete an ironman event).
At the time there was nothing positive to grab hold of for hope - but I still did. Now I will leave out a bit of the story since I have only told 3-4 friends in my entire life this part, so it is not something too easy to talk about.
Long story short, to the surprise of the doctors suddenly the tumors started to shrink. A few months later I had the major abdominal surgery in which they cut me from one side of my abdomen to the other (and part of the my side). It left a nice upside down happy face scar on my abdomen (and the lost of Rectus abdominis muscles on the right hand side below the lesion). Despite telling me that I might not be able to ejaculate after the surgery (which proved to be incorrect), and ignoring even if I could ejaculate that I would unlikely be able to father a child, they never even raised the possibility of storing sperm for this purpose in the future (which you might have read happened with Lance Armstrong, and I presume most others in our ‘modern’ times - depending on medical coverage).
26 years later: (not a ‘relaxed’ photo)
I beat the p < 0.05 odds:
Against the odds by the very early spring of 1981 it looked like I had beat cancer, if you ever can really say that. The doctors with big smiles told (retold) me how at the beginning they thought I only had a 5% chance of surviving, and this time I heard them, but that I had beat the odds. Sure, in the subsequent years I had to go back for a couple more major surgeries to remove growing benign tumors. The surgeries nicely added to my war scars tracing my body, that decorate’ my torso.
On June 28th 1981 Terry Fox died. Each and every year in September there is a Terry Fox run to raise money for cancer research. Worldwide over $ 400 million dollars have been raised in Terry Fox’s name. Beyond the millions of dollars raised for cancer research Terry has been an inspiration for untold millions of people with cancer. It would be hard to find a bigger everyday hero in the fight for cancer.
Terry Fox is a hero in the truest sense of the word. He was an inspiration to me and millions more. I got to see some of his Marathon of Hope from the hospital bed of a cancer ward in the summer of 1980. Was it fair that I survived and he didn’t - no. Sadly cancer is not fair.
I surmise a large part of my survival came from rejecting the possibility that I was going to die. Even though the doctors clearly stated to me the reality of the situation, that I had very little chance of survival, I totally ignored them and assumed I was going to live. I grabbed hope, optimism, even when none was offered.
But I am sure the same could be said about Terry and many others. Most grab and hold tight to any hope there is. Terry was full of hope and that inspired him to try to make a difference. But hope is not always enough and that is why we have to continue the fight to find newer and more effective treatments for cancer.
But I do wonder how much hope plays a role? Now it is a very delicate and ethically troubling question of how much hope one should offer to patients. It is a fine line between between not telling the full truth and offering false, unrealistic, hope, and not offering enough hope. And all of this can largely depend on the patient and how they ask the questions. And no matter what the doctor and other health care personnel say the patient might not really ‘listen’. I will talk more about the delicate issue of hope and patient care in a soon to be posted piece.
In memory of Terry Fox.
The neuroscience of hope
Cancer over the last 50 years
Lance Armstrong comeback to raise funding and awareness for cancer research