Age at Diagnosis: 22 (1998)

Hometown: St. John’s, NL

How did you find out you were sick? What events led to the diagnosis?

What events led to the diagnosis? I, and every Patient I know, learned about their cancer through some event, some occurrence that lead them to go the hospital for initial testing. I was at a buddy’s business reception. It was a Friday night, November 6, 1998 and I was having a conversation with a gentleman when I felt this sick feeling in the stomach. I went to the washroom to put some cold water on my face and returned to the conversation. I started to get the cold sweats and felt as though I was going to throw-up. I got a light head and turned around to lay my drink on the table behind me and just as I did that I passed out. I fell back and hit my head on the wall behind me. I woke up staring at the ceiling and was then taken to the hospital for “observation” in an ambulance. Upon arriving I had a blood test, and the results of those tests lead to a collection of Doctors visits and other tests. My blood counts were way down (Hemoglobin = 75, Platelets = 20). Three days later I was diagnosed with Acute Myeloid Leukemia (AML).

What year was it? What was your age at the time?

I was diagnosed in November 1998, less than a week before my 23rd birthday.

At what level of education were you at diagnosis?

Very fortunately I had just graduated from Memorial University of Newfoundland in May 1998 with my degree in Business Administration. I was actually scheduled to graduate in May ’99 with a Co-op Commerce degree, but after my first work-term I had started my own business and decided to opt out of the Co-op program, do a Bachelor of Business Administration and finish a year early. That worked for the best in a way I could never have imagined when I made the decision.

Do you work? Founder and Executive Director of Realtime Cancer

What was your diagnosis?

Acute Myeloid Leukemia M-4.

What were your first thoughts when diagnosed?

The news was presented to me in two phases. Sunday, November 8, two days after entering hospital, I had a meeting with my Doctor to discuss the road ahead. At the beginning of that meeting I knew very little about my condition, except that I was expected to stay in hospital for about two weeks. By the end of the meeting that stay had been extended to an undetermined amount of time. As we were nearing the end of the meeting my mom asked my doctor “what do you think the problem is?” To which she responded, “we think it is Leukemia.” I was then given a “day-pass” for six hours, in which I could go home, have some time away from the hospital and get some things for my extended hospital stay. I tell a great story about this afternoon… have you ever seen the episode of the Simpson’s when Homer eats the bad Sushi and is given 24 hours to live? Well that is kind of like the situation I found myself in, as when I left the hospital I had no idea if that might be the last time I was ever out in the world. I went home to my apartment to get some of my favourite music and “comforts” that I would want in the hospital. Upon arriving I had a very quick chat with my roommate Steve, who ultimately asked how are things going? I said “not good”, to which he responded “what do they think it is?” I sat there on my bed looking at Steve for what seemed like five minutes trying to answer his question… I knew the answer to the question and I said the word “Leukemia” over and over in my head but couldn’t get it out. Finally I said “Leukemia… they think it’s Leukemia.” And it is as if in that one statement, that took great effort to say, I began to wrap my head around this major Challenge. In my head I started to let this roll around and ultimately, and quickly, got to the point where I was saying… “yeah, they think I have Leukemia, and I can tackle that!” I then focused on how I would tackle this Challenge. There were two major components, one involved my strategy which I decided would involve hockey. I had played and/or coached hockey for most of my life, it was and is a true love of mine. I had never been diagnosed with Leukemia before, so I decided to bring the same mentality I used to bring to the rink to my hospital room. I would get aggressive with my cancer. I created a virtual play-off hockey series in my head, Geoff versus cancer. Each round of chemotherapy would represent a game in my series. My family and friends bought into my strategy completely… my Dad bought me the official stick (a Mario Lemieux stick), a buddy who works for the St. John’s Maple Leafs gave me the official puck, I wore the same jersey I wore in high school and I even had an official Cup that I was playing for. It is important to note that initially I really felt my cancer involved a fight, and I was up for it. I no longer feel that way and reading my emails you can see a progression to a more accepting non-combative approach. By the time cancer came around again, when I relapsed in July 2001, I considered things using the “Journey” analogy. Still as determined as ever to live and love life, but not hating cancer, not wanting it dead, just gone. Cancer is my friend, not a friend I want forever, but it has taught me so many valuable lessons, helped me develop this perspective that I would not trade for anything in the world. That is why I consider my cancer challenges two of the greatest blessings I have ever received.

How did your family react?

For their internal reaction you would have to ask them. From my perspective they were, and still are, exceptional, amazing, extremely supportive… they played such an important role in my experience. I was the player, they were the coaches and fans, and it was a pleasure to play for them. My parents and family in particular were so amazing that I am struggling to find the words… awesome, incredible, sacrificing, selfless, they were all of those things and so much more. Their reactions were predictable at some level, they were shocked, we all were. Cancer is something that comes out of nowhere most times. But they were so quick to put my interests first and support me, and that made a major difference in my experience.

How did your friends react?

They were, and are, mixed. Some of my buddies have gotten closer to me, others have faded away. That is the normal ebb and flow of life, but I can see how cancer has influenced most every relationship/friendship that I have. Some for the better others not so much for the better. The challenge I now face is a major reason why I started RealTime Cancer and will be a major part of our focus for the years to come. When I was building strength and working my way back the first time I discovered that life had gone on for my friends. Mine certainly went on too but not at all in the same direction. And when I was able to re-enter some social circles that were familiar to me, I discovered they had all changed. The other major complicating factor for me was that I had undergone this incredible growth, experienced this amazing addition to my personality as a result of my life experiences with cancer. Most people my age couldn’t relate to that. There is no fault here, it’s just the way it is, and that is perhaps one of the greater struggles I have faced with these cancer challenges. Those feelings of having very few people be able to relate to my situation. I happen to be of the school of thought that suggests you don’t need to connect with those who have had similar experiences to have others understand… I believe that if you as a person are empathetic and compassionate you can play that role. I don’t need someone to have experienced a Bone Marrow Transplant to say “yes I understand how you feel.” I feel that a friend who wants to understand is enough to make the difference for me. The trouble I feel is that perhaps many of us don’t have those friends who have the interest and ability, cause I think it requires both, to actually make the honest effort to understand and empathize with other people’s situations.

What did your treatment consist of?

Medical Side: I had chemotherapy, a bunch of different drugs given over different lengths of time. I actually do know all of them (Ara-C, Idarubicin, Novatrone, Etoposide, Cyclo-phosphamide, Busulfan) those were the chemo drugs. There was a ton of other drugs to help with infections, reactions to blood transfusions and complications from chemotherapy, those I don’t remember as well. I also had my life-time dose of radiation (full body radiation, front and back) the morning of my first Transplant. Those treatments were designed to primarily destroy the Leukemia in my body and in doing so they also destroyed many healthy cells and ultimately before my Transplants the chemo and radiation wiped out my entire immune-system. The idea is to completely erase my faulty immune-system and then give me a new one, which in my case was from my Dad. My Dad’s immune-system is able to handle Leukemia so by giving me his cells my body should be able to handle it in the future. That’s the simple version of the theory. The emotional side of the treatment was interesting. It wasn’t that I had much trouble with the idea of having chemo, but the emotional challenges came with the serious side affects of the drugs. The loss of hair was easy, as my buddies and I have shaved my head before I lost it, but the loss of appetite, weight, prolonged sickness and infections were all tough parts to deal with, but also parts that can be dealt with. My approach involved staying focused on today, taking things one day at a time as much as possible. For me in some strange way I felt that when I was having pain and discomfort I felt as though I was really “playing hard”, competing if you will and I took comfort from that. The greatest Challenge I had with respect to treatment was making the decision to have a transplant. Each time the situation was different but it was equally challenging in it’s own way. The first time it related more to the fact that 99.9% of Transplant Patients are sterile after the procedure. This fact was not discussed with me until it was too late to bank my sperm (I attempted anyway but was unsuccessful) as the first two rounds of chemo had at least temporarily wiped out my sperm count. As a young guy and the oldest grandchild I always looked forward to having my own kids, not yet but at some point in the future. I was now placed in a position where that option had very possibly been taken away from me. It is unfortunate and while I don’t hold resentment for it, the system really let me down and completely failed to handle that situation. I was forced to weigh the options of having a Transplant, which I was told would increase my chances of hitting the 5-year mark to 70% but also most definitely remaining sterile for the rest of my life. And not having a Transplant, assuming my sperm would return, which was a high possibility, and having a 20% chance of seeing 5 years. So I was told. I ultimately decided to have a Transplant in Toronto, but it was the toughest decision of my life to that point. The second time I faced a Transplant decision it was again a very trying time. I was told that the second time out it was best for me to have one round of chemo, hopefully get in remission and then go straight to Transplant. I pursued that option but due to a nursing shortage in Toronto was presented with the situation of coming home, having another unnecessary round of chemo until they were able to fit me in a month later. That was unacceptable to me. I looked for other options, both in and out of Canada. I received little to no support from the Government of Newfoundland and Labrador, in fact what I received was confrontation and policy. I had a time frame of days/weeks to make this major life decision, a six week waiting period for a possible review was not an option. I searched for options, as a patient that is what I wanted; I wanted to have some choices. As tough as it would be to make a decision, I didn’t want to be faced with no options. Fortunately thanks to the help of my Docs the Ottawa Hospital agreed to take me on under what I call “Plan A.” There system for Transplant is quite unique and almost as if it was customized for me. An environment that gives the patient more responsibility for their care, I loved their process. As difficult as it was, it was the best place for me. Those two Transplant decisions were two of the toughest times of my life. They were a spark to look inside very seriously and extensively.

In which hospital(s) were you treated?

I spent most of my time at the Health Sciences Centre in St. John’s NL. But had my first Transplant at Princess Margaret Hospital in Toronto and my second at the Ottawa Hospital in Ottawa.

What is your current medical status?

I will celebrate the 3rd anniversary of my 2nd Transplant on October 10th, 2003.

How is life different for you now post diagnosis (physically, emotionally, socially, spiritually)?

I love more things more. All the cliche’s are true, all the classic stories are right… I do appreciate every day more. I also appreciate and cherish the growth I have been able to do personally and the things I’ve been able tackle professionally with RealTime Cancer. Cancer may suck, but it’s a blessing above all. It can take great effort to find the good things in something that we have long thought of as bad, but I can promise you there are good things in all of life’s challenges.

What is/was the toughest part of your challenge?

The toughest part… I would have to say those two things I mentioned above. The friendship thing is tough and challenging and so is the energy. The friend thing is something that I feel is temporary as with effort I will establish a new and different circle of friends that will mix with my existing ones. The energy thing is something that I know I can improve but I do feel I have limited resources with which to work. However, certain parts of my body have been seriously affected by my treatments and experiences.

What is/was the best part of your challenge?

The best part is still here and it involves creating the opportunity to learn new and important things about life and all things in it, and then to make the opportunity to share those with other people. The feeling of sharing an experience and then seeing another have success with that experience is amazing. Perhaps the best feeling you can have while here on this earth.

What really motivated you to keep going while you were sick?

I live and love life, it’s great to be here and I would like to stay as long as I can. When it’s time to go I’ll be fine with that I feel, but for now I love living!

What lessons or messages have you taken away from your experience?

Love today, make the effort to find the positive’s, everything happens for the right reason, all the bad stuff has good stuff in it, the law of Karma really makes a difference, it’s ok to be afraid and cry, it’s ok to be mad and upset, but for me it’s not ok to let myself stay in those places, there is a time and place but it’s not forever, share yourself with your loved ones and those to whom you have no obvious connection, make a positive impact, Always… Live life. Love life.

What are your thoughts and feelings about your illness now? How have they changed since before your diagnosis?

I always felt that this thing called cancer contained some very significant opportunities to learn some really important stuff. I also always felt that it was given to me for a reason, or reasons. What I didn’t always feel was a calm that I can sit with it, be around it fully, and still work as hard as possible to not have it overcome me. You can want to live without wanting to fight, the word fight doesn’t mean win, cure, whatever. You can think of it on those terms, as I did once, but I have traveled to a different place with that perspective and I like the one I have today more. I started from the beginning to look underneath for more purpose but it took a year or more before I really made great progress with that, and that process has been a great joy in my life. Have a look inside for a little more than what you initially feel and think. It’s worth the effort.

What are some (if there are any you know of) preventative measures that people can take to lower their risk of having an experience like yours?

Let’s get rid of those damn commercial pesticides. I have read a collection of studies; one in particular found that children with Leukemia were 6 times more likely to have grown up in neighborhoods that used commercial pesticides. That has to and will happen. The other things are to just take care of yourself, which I wasn’t doing very well. Eat well, exercise, sleep, and drink water, that’s all good stuff to do. And yes, smoking sucks (http://www.smokingsucks.ca/). Take care of yourself, you are worth the effort, and it will take effort lots of times, but I will always encourage you to make it.

Did you attend any support groups during your challenge?

Yeah, I attended a couple of different gatherings. One was good the other was just a bitch session. Now I believe there is a time and place for ragging and I think it is an important step, but there is a limit to how much of it you can handle. A positive attitude is extreemely important in dealing with your situation. It is a very personal thing but my preference is to be around people who are real about their situation but also want to deal constructively. I learned that is very difficult to find. So I generally stayed away and that is really one of the reasons RTC exists. The good one I attended did help but I was a little turned off because I was by far the youngest person in the room. In many situations I don’t mind that at all, but when it relates to some of the challenges I’m facing I much prefer to be around some people who can relate to the social, emotional and physical issues that I’m experiencing. I still haven’t had that experience of support the way I want but my hope is that the first RTC retreat will be that experience. Our plans are to deliver our first retreat in 2005.

How are you connected with Young Adult Cancer?

Why did you start Young Adult Cancer? YACC started from my desire to help and to share my experience but it has grown to so much more than that. Our vision continues to evolve and I am jacked about the immediate and long-term future of YACC. I made the statement the other day “that YACC could basically do anything involving youth and young adults facing cancer and it would be a marked improvement on what’s being done now”, and truth be told this field of helping young people deal with cancer is wide open. And we don’t plan to do just “something”, if I have my way (and I like to have my way) YACC will become the #1 resource for young people dealing with cancer who are looking for inspiration, info and support and a champion to voice a vision of how we see the healthcare system and the need to evolve and improve. Basically we want to take over the country… in a caring compassionate kind of way. We’ve got a great vision, tons of opportunity in front of us and the road ahead is going to be full of awesome and crazy experiences. It is my hope that people, our audience and the community, will continue to embrace what we do so that we can keep doing what we do.