Young Adult Cancer Canada - Community - Geoff's Blog

11 Years a Survivor, 11 Lessons Learned

2009-11-06T23:47:15Z

11 years ago today I started my life as a cancer survivor, my official diagnosis of acute myeloid leukemia would come in a few days. The diagnosis brought huge challenges and triumphs and embedded within those experiences were some of the most important lessons I have ever learned. Here they are.

11. “Life moves pretty fast, if you don’t stop and look around once in a while you could miss it.” – Ferris Bueller

Steve Webster, a young adult survivor buddy of mine stated at Survivor Conference 09 “when you are just beginning your life and you are forced to face the end of your life it affects your whole life.” Having faced the potential end of my life it now helps me stop and look.

10. The system serves itself, if you get in the way bonus.

The combination of my small business upbringing, my customer-service mind-set, my own impatience and type A personality lead to many and a variety of conflicts with the healthcare system. Putting my personal faults aside I have come to learn that far too many processes and systems within the healthcare system are created with the system in mind with little or mostly no consultation or input from the patient’s perspective.

At this point in my life I fully believe the sole reason for this lack of patient focus is the fact that I can’t walk across the street to hospital X and have my blood taken. Without taking on a “privatization of healthcare” debate I will say that competition most often results in better service for the customer, or in this case the patient.

9. Support is HUGE.

Family and friends make a huge difference when facing challenge in life. Their support is a major reason I’m still here.

8. 1-ply toilet paper is no way to save cash. Bring your own!

What do you get when you have a 38 day stay in hospital, that starts with 7 days of chemo flowing 24 hours/day and an unlimited supply of 1-ply toilet paper… you do the math.

7. Bald is beautiful.

It is both beautiful and more hygienic. And I’m not just saying that cause I am bald.

6. Peers make a difference.

Hanging with others who “get it” is healing, powerful and life-changing.

5. Cinderella said it best, the band not the princess… “don’t know what you got, till it’s gone.”

My experience has shown me that some things are hard to fully appreciate until you return to them after an extended and forced absence. Hockey was like that for me, something I always loved but didn’t fully understand until I couldn’t and didn’t play for seven years.

4. Stop to smell the diapers.

Roses are one thing but when you can appreciate the blessing of changing a dirty rotten stinkin’ diaper then you have found a value perspective on life. Hold it forever.

3. Whoever said “he who dies with the most toys wins” was an idiot.

I recognize the humour but feel for those who live this philosophy, if you can call it that. It’s not about stuff, in fact the stuff is mostly meaningless, what matters is the experiences you have while you are here. When you are preparing to go to the other side they will matter, most everything else won’t.

2. You can make a difference.

I never liked the terms “winning and loosing” when it came to cancer… for me it was always about using whatever time I have left to make a positive impact on another’s life. I’m confident my connection to that purpose is a major reason I’m still here.

1. Hope will change your life.

There have been times of great hope and times of no hope, times when I could give it and times when I needed it, times when I could feel it and times when I couldn’t. Having lived with and without hope I can say when present it will change your life, it has changed mine.

Always…
Live life. Love life.
Geoff

Entrepreneur of the Year

2009-10-08T11:03:20Z

Many months ago a buddy of mine approached me about the Ernst & Young Entrepreneur of the Year awards program. It’s an international effort the accounting firm runs annually in many countries across the globe.

It’s always nice to be asked to do this stuff but I don’t jump in without some consideration as they usually involve a fairly significant time commitment.

I did jump in and the time commitment to complete the application was significant. It revolved around telling my story and the story of starting YACC.

I was listed as a nominee at a reception in the Spring, then in early July named an Atlantic finalist which meant I had the opportunity to attend the Atlantic gala in Halifax in October, on the 1st.

While I considered this opportunity it really came back to one very simple thing, would this effort open doors for YACC… and ultimately would we be able to point to tangible outcomes that indicated this was a valuable effort? Bottom line, I wanted to connect with some new donors… getting our message out to 400 influential business people at the gala, also a bonus. The former, the revenue, will take a while to evaluate. The latter was accomplished, helped significantly by the fact that I won the entrepreneur of the year award, and thus got to “say a few words” (see embedded video) which included thanking some very important people and informing the audience of YACC’s reason for being.

Before I end let me get a forgotten thank you out to some important people who vanished from my mind for a few moments while giving my acceptance speech at this event last week… my family, my parents specifically. I’m a product of my environment, and while yes I’m an independent adult now I believe everything I do is connected to the foundation of who I am, and for that I have my parents to thank.

As the “starter” of YACC I sometimes get lots of recognition, which is nice and makes me feel good about what we do, but I’m smart enough to know that any individual award usually has tons of people connected to it. This is no different, so while that fancy trophy has my name on it, there are literally thousands who have contributed to our success to date. To all of you, thank you. You are helping us help young adults with cancer.

Always…
Live life. Love life.

Geoff

Call me a patient, treat me like a customer

2009-09-24T11:50:56Z

Research, I learned yesterday, indicates that most patients want to be referred to as patients, as opposed to some other terms like customer, client and my favourite, victim. Nice to be in the majority on that one as it is my preference.

At the same meeting I attended yesterday there was considerable discussion around the concept of patient-centered care. The definition wasn’t defined as many, excluding me, were somewhat familiar with its evolution and the systemic thinking behind it.

This systemic thinking comes from what I feel is a truly noble, compassionate place but as our discussion rolled on it became obvious to me that it needed some refining from this patient’s perspective.

I’m a fairly regular visitor to the out-patient clinic to get my blood tested and it is this experience that crystallizes the gap missing in the thinking around this patient-centered care concept.

I regularly have to wait 60 minutes to have my blood tested. I should be in there for this test at least twice a month as I continue my half-hearted commitment to bringing my feritin (iron) levels down with (ir)regular phlebotomies – a donation of blood that goes to the garbage. That’s 24 hours a year just to get blood tested regularly.

Everyone’s time is precious but I have to tell you mine is more valuable than ever at this “young family” stage of my life. Free time is a joke really, my wife and I debate (heatedly at times) over who gets the opportunity to do chores… I will admit that prior to kids I never thought I’d have to lobby strongly for a half hour to clean the garage or mow the lawn.

Growing up I had the privilege of seeing the A&W business from the inside, as my step-mom was a franchisee. A&W want you to get your hamburger and fries in 90 seconds or less at lunch and they track their success vigorously in every restaurant. In addition there are national practices in place to ensure the product is satisfactory and if not the situation is remedied. I also know enough about A&W to know that they spend a ton of money on climate, their people, something that is integral to achieving any sustainable success in business. This type of thinking is “patient-centered care” at it’s finest but it seems until yesterday it hadn’t surfaced in a meaningful way within the cancer system.

Sure providing me with the best therapy available, ensuring all of me is treated including my mind and spirit, these elements are essential and require progress but the ultimate milestone for me will be feeling like I’m a valued customer when I’m actually a patient.

This blog is full of stories about the system hitting me with obstacles instead of opportunities to address my situation. Registration for appointments was a favourite target of mine for many years. For the record after 3-4 years of refusing to register for any hospital appointment I do now reluctantly register.

There are two parts to this shift as I see it, and the first is the monumental one… it’s the required cultural shift within the health system to treat patients like customers. The second is relatively easy if you nail the first… delivering on that enhanced patient experience.

I’m not sure I’ll see the day when the health system has a target wait time for me when I get a blood test and measures its success meeting it, but I hope my kids will.

Always…
Live life. Love life.
Geoff

Long Sleep, Longer Recovery

2009-09-04T19:04:17Z

Everyone was wondering, but yet afraid at some level to ask or say anything about “the light”. Excited, amazed and generally feeling blessed to see me with my eyes open and doing something as simple as breathing on my own. The relief must have been in some ways overwhelming. For a small group of people connected to me this was the hopeful, miracle end of a ride that appeared to have tragedy written all over it.

10 years ago today I was starting a new challenge, another one. After a month in ICU on life-support where I faced life-threatening infections, had my lungs bleed out and was given less than a 2% chance of surviving I was now home.

I still struggle with placing this experience among the many I’ve had in my now 33 years. I believe it was a rebirth for me. It is for me, 10 years later, still impossible to describe the experience of having such intense energy, love, compassion, directed my way for an extended period of time but to be unaware of it, consciously. It is in many respects like being a new born, but my situation wasn’t about celebration. Not until I opened my eyes and started the trek back to independence.

A memory of being in the ER and begging a doc for some pain-killers and the memory of my buddies wheeling me up the stairs to my Mom’s house are the book-ends of that ride. There are a very few precious other memories or dreams, real or created, that I have from that time. I don’t get the opportunity to actually talk about it very often, or hear others talk about it, but when it does happen the words are some of the hardest for me to speak yet some of the easiest to hear. To say I am curious about that time is a massive understatement.

In the run of life-time milestones defying death while turning the 1% into reality ranks pretty high on the achievement scale. Yet unlike my university graduation, my wedding, and many other significant triumphs this one comes with a memory vacuum.

Imagine not remembering your grad, your wedding, or other major life events? Don’t know if you can but its kind of where I am.

Despite no actual memory for a month I’ve fabricated some great re-enactments of that time, in my mind, even recalled a few dreams from the time under. Not sure if they help or feed my curiousity to know more about that time of my life but I can say this… I know enough about that experience to answer the question that was on everyone’s mind.

No I didn’t see the light… but I do now.

Always…
Live life. Love life.

Geoff

Movie of my life?

2009-08-14T18:31:16Z

How do you begin to write about this? I’m not sure, I guess that word “surreal” applies.

About four years ago I connected with a writer/producer who wanted to make a movie about my first cancer challenge, specifically focusing on my hockey strategy and the medical issues I faced. The idea had crossed my mind many times, and I remember a few conversations with my Mom during that first round with cancer when I felt like I was living a movie. But to say it wasn’t on my radar is an understatement.

Paul, the writer, and I have developed a great relationship and off and on this project has been pushed or benched over the past many years. It was turned down by one Canadian broadcaster as they were already invested in a cancer story, a guy named Terry Fox.

From the moment we first discussed this project I’ve attempted to wrap my head around the process that a project follows from concept/idea to screen. I’m further down that road of understanding but still fairly gray as I haven’t been a part of a movie in any capacity except the watching capacity.

I knew from the beginning that it would be a major event in my life should it become reality and was definitely excited by the potential opportunities that would result. Not too mention it would make fund-raising for YACC a little easier!!

It was a project that would be massive but not one I could control so I “put it outta me mind” as Buddy Wasisname would say. Save the many calls and occasional meeting I’d have with Paul as he delved into that time in my life.

A few months ago the CBC ordered a script of my story. I am told it is the biggest hurdle in a series of hurdles that must be overcome on this path from concept to screen I mentioned. The project made its way up the chain at CBC ultimately getting blessing from the top. Along the way it was even pitched to Tom Cochrane, which is a pretty cool thing all on it’s own, and Tom endorsed the use of four of his songs (I’ll leave you to guess which ones) and offered to score the whole movie.

If nothing else the next time I bump into Tom Cochrane I can say I’m the hockey cancer guy.

Until a few weeks ago I had kept this news close but to prepare for Paul’s trip (which included his producer buddies Tom and Eric) to The Rock I had to break out the secret a little. I know this isn’t something that can or will stay quiet for a long time so in true Geoff style I decided I’d control the message and connect it here.

There are no guarantees in life. This project is another example of that. But it’s also an example of a dream and there are few things in my life I love more than seeing a dream of mine turn the corner and make it to reality. Good vibes are the best I can do now to help this dream along so that’s what I’ll do.

You may be thinking about what this means, or that could just be me… if this goes it means my story will get some major profile for sure, and there are definitely opportunities for me personally that will follow. I am excited about those possible opportunities and what they can mean for my girls and I. The day our first little girl, Adia, was born my first priority became ensuring she had the opportunity and security to pursue her dreams. I won’t retire on the cash I’d receive for the movie but those opportunities that will result from it will help me ensure those opportunities and the security of my three girls.

It also means the issues young adults with cancer face will get some major profile, and there will be huge opportunities for YACC as a result. I’ve had a great time dreaming out loud with Paul about how big this could be and while we’ve got a pretty extensive list of opportunities identified I’m pretty sure there are many more waiting for discovery.

Because this is such an unknown, whether or not it gets the green light, it also means that we won’t change our course at YACC, nor will I be leaving to “pursue other interests”, not now and not if the movie goes ahead. My interests are YACC, and a little over 9 years in that hasn’t changed.

Would be a pretty nice boost to our communications efforts in 2010 if it aired next year! Good vibes are flowing.

Oh and by the way I have requested, as per Karen’s wish, that Brad Pitt play me.

Always…
Live life. Love life.

Geoff

The bike will be my blood test

2009-07-22T01:05:51Z

The cancer experience does not stop with chemo’s last drop. In fact many of us will face our biggest challenges after the poison is finished, after the frying, stabbing and prodding. Let’s not underscore the physical pain during and after treatment, I had lots of that but it was at least equaled by the emotional side of my experience.

I have a slight physical hangover from my treatments, and I know that the drugs and rads put me at increased risk for lots of other nasty stuff, including more cancer. However the mind, my mind has presented far more challenge after treatment than my body.

I don’t live in fear, anymore, but there were times when I did. Having a doc tell you that “likely your first remission will be your longest” pushed me to live like cancer would be back in two years or less, given my first remission was just over two years long. For the record my second remission is almost eights (October).

The fear still jumps in every now and then but I’ve reached a place where I know how to handle it and that really has come with an evolved perspective on my life and where I am.

Fear gets a lot of play sometimes but it’s not the only emotional challenge. For me I can say that I still get the pang of frustration when I feel the urge to do what I would have once done… could be rolling around in the dirt stopping balls on the pitch, could be getting a good start with 15-16 beer before switching gears and moving on into the night, or sometimes it’s wondering what I would have done with those years I spent in and recovering from chemo, transplants, ICU.

These scenarios I describe are regular and real thoughts that play out in my mind and they do come with a touch of desire attached. Desire to see my life without cancer. I say see, not live. I love my life but that doesn’t mean I don’t wonder and even want something’s to be different. That want represents some work for me but no one’s perfect! And truthfully that’s why I come here, getting thoughts and feelings on the screen makes a huge difference for me.

I digress, again… now that you have the background I will get to yesterday’s resolution and the title of today’s blog.

I still get my blood tested regularly, at least once every couple of months, and I regularly (though not regularly enough) have phlebotomies to help bring down my feritin (iron) levels, which are super high, like 930 high. I’m working on my eight year anniversary of my second transplant, haven’t had active treatment since then but I still get the pang everyone now and then before or more commonly immediately after my most recent test, until I get my levels back of course. The waiting still kills a little.

As I got back to the gym yesterday after a few weeks off for flu and moving I was thinking that maybe I need to let go off the blood levels, after almost 11 years of watching my hemoglobin, platelets, white cells, nutrophils, LFT’s, feritin, and MCV it is time I let them go.

The bike will now be my blood test. It may not show the nuances of my blood but I’m confident that it will give me all the feedback I need to know which direction my health is going. I am taking a break from the levels, unfortunately that won’t correlate with a break from the needles as I’ll still get my blood checked regularly, even make the effort to get in for more phlebotomies and finally get my damn feritin down but I will no longer inquire and thus worry about my blood levels.

One thing I have noticed about getting back to some reasonable level of fitness is that I have a better gage on my body when I’m pushing it.

Going forward I will do both, push it and gage it.

Always…
Live life. Love life.

Geoff

Emotional trauma can cause cancer

2009-06-25T00:46:42Z

This falls into the category of something that I’m sure of right down to my new bone marrow.

A new study released today doesn’t lead with this heading but when I read the heading this is what occurred to me. Esme Fuller-Thomson, PhD and Sarah Brennenstuhl, MSW of the University of Toronto have drawn a link between physical abuse as a child and increased incidence of cancer. Physical abuse is accompanied directly with emotional trauma and I would imagine that not unlike a cancer diagnosis, this emotional trauma likely lingers long after the physical body has recovered, if it recovers.

This is listed as the second study of its kind and what I take from it, even in the early days of this path of investigation, is a message that speaks to me so strongly… it’s all connected, just like we are all connected. If we treat only one part of the problem we’re not effectively treating the problem, similarly if we’re only or primarily looking for a small part of the potential cause we’re not likely to find the holistic answer that will provide holistic insight. Holistic insight is one of those things, like sustainability, that gets me going.

What do I mean by holistic insight, a solution that takes into account all elements of the issue. I submit that the emotional side of cancer and all disease, and life for that matter, has been an after thought on the research agenda. Have we really established the emotional side of cancer, both prior to, during and after diagnosis and treatment as a priority? I’m not sure we have.

I was recently at a meeting, focusing on young adults with cancer and research… the docs, well-meaning bless them, recite this phrase that I’ve heard often “the best way to improve survivorship is to improve survival”. Got a nice ring to it hey? But what does that mean? I ask in an extreme example, is this a “win” at all costs approach? As long as we’re alive we’re winning… no, for sure not. How about a little more “it’s my life, don’t forget the quality” in the research discussions. At this same meeting I made the suggestion that research on young adults and cancer should be 75% psycho-social, 25% biological. Given that I was the only survivor in the room of 18 or so you can imagine there was no consensus reached on my suggestion.

And then we have today’s study, which is asking the quality of life question prior to diagnosis as a potential cause of the diagnosis… sometimes this is almost too far ahead for me to see when I reflect on the focus of the majority of cancer research spending. (For a breakdown of research spending in Canada check out the Cancer Advocacy Coalition of Canada’s Report Cards - http://www.canceradvocacy.ca)

I see opportunity, we have a long way to go to reach the balanced approach that will provide those holistic insights that will really have a massive impact. Getting studies like the one released today out in the public is a great start, not just for the specific issues addressed in the study but for the whole concept of researching emotional trauma and cancer. Next time I’m at a research meeting for young adults count on me throwing out that 75% again.

Always…
Live life. Love life.

Geoff

YACC is 9 Years In

2009-06-17T19:38:53Z

Yes, tomorrow is our birthday and we will be 9. What’s changed? Lots.

First, I don’t work in my old bedroom at my Dad’s anymore. And while I used to work from my old bedroom be clear that I was the only one who did, but that too has changed, not just me working at YACC. In fact we have an awesome crew of six full-time dedicated, passionate and talented people.

These six people have allowed us to establish, grow and support amazing programs that make a difference in the lives of young adults with cancer. Because of these programs many more young adults are connected with inspiration, information and support that is relevant and brings them from isolation to community.

The issues facing young adults are more prominent and there is a slowly building community of advocates, from all stripes, preparing to push our agenda to the top of the list after decades of neglect.

Our focus, which I will admit is largely my focus, is more refined than ever. I was asked a while back “what has been your greatest obstacle to growth?” I replied honestly, as I always do, and said me, I am our greatest obstacle. Specifically my focus has been the greatest challenge for us… we(I) are more focused than ever and the process of getting more focused has taught me and us that the sharper our focus the more effective our efforts. We have already seen this play out and I am jacked to watch it happen in new ways on a bigger scale.

Given we do a small collection of impressive accomplishments I would underscore them all by saying that our best is yet to come. I believe that in my core. Not to negate our successes to date but our vision sees much further down this road we’re travelling, in fact it stretches further than we can see and for that reason I know we’ve got some amazing things ahead. I say this because there is much to be done, many more young adults, just this year alone, who need to hear about our communities and events, many more professionals that need to be convinced we have different issues and require customized programs, many more Canadians need to be engaged in our work.

And it will happen. There is much to do, and we are on it.

You know if I break everything away and truly get back to my mindset 9 years ago I will say to you that a major driving force behind my vision to start YACC came from this place deep inside that I wasn’t even aware of until diagnosed with cancer in my 20’s. It is a place where fear, opportunity and a desire to make an impact collided. I had the fortune to learn before cancer that I wanted to use my life to make an impact, it definitely wasn’t in this area or in this way but I knew I wanted to help make things a little better. In my own version of better.

Facing the distinct possibility of dying at the age of 23 brings forth a ton of new and different thoughts and what has been for me a new perspective on life and what’s truly important. As a single guy, in his early 20’s, who knew he wanted to use his life to make things better the idea of legacy came to the forefront for me. How will I be remembered? This question is not usually covered during happy hour banter with the boys, but when dealing with your own mortality about 60 years prior to anticipated it was what rose to the top of the list for me. Young Adult Cancer Canada was my way to address that question.

My answer was never about giving something a good go, or having a solid run for a few years, the answer for me was to create something that would be sustainable, around long after I’m done with it, doing good stuff to make a difference. Breaking it all away I know this question of legacy was a major motivator behind me taking the first steps to get YACC off the ground 9 years ago.

I said in a speech the other day that I take a lot of credit for giving YACC the initial push to get going. And I give a lot of credit to the thousands, literally, who have jumped in to make YACC what it is today.

So as we celebrate our 9th birthday tomorrow at our annual golf tournament I will take a few minutes to think about our very humble beginnings and another few to envision the future we will create. I’ll also say a big thank you to those many thousands of people who have helped along the way, if you are one of them, big thanks, if you aren’t hope you can help at some point in our next 9.

Always…
Live life. Love life.

Geoff

“The Revolution is Coming”

2009-05-26T17:42:44Z

Stay with me here while I bust up this keyboard as I’ve got something to say… wait a minute… “That’s the way love goes” by J Jackson won’t cut it… Better Now - Collective Soul, much “better”.

Who has the power? If you aren’t sure about this answer we need to connect more… the answer is you do. On the macro level I’ve got this core belief that “the people” are the ones who have the power. What do i mean by the people? Any individual or group that wants to influence change. Power is as much perception and when you believe you have the power to influence change you are half way there, the biggest half too might I say.

Change, what would we like to change? It’s a long list for me as I see opportunity for growth and improvement everywhere and of course the Canadian healthcare system is as prime an example as you’ll ever find. Funny how those places that are often in need of change the most are designed to resist it at every corner. So we have this system, that in my opinion needs to change, in fact there is so much change needed that I could, on a good day, make an argument that we should not bother but instead drop a bomb on it and start over.

During my active treatment I battled with the system so often cause I hated being second or twentieth priority, I lived in a system that was foremost interested in serving it self. The ultimate example of a human creation that is out of control and self-serving. Forget all the nightmares about the day the terminator’s turn on us, we’ve already got it and we’ve created this monster to serve the most precious element of life, our health. What really pissed me off was when I was really sick, and I mean I could barely have a conversation with people my energy was so low yet this system of ours would push me, demand more when I really had none to give. Yes it was humans who carried out these orders from “the system” but for some reason they were caught in a mind-trap unable to think for themselves far too often to see that I had dropped 30 pounds in a month, had no white count and that it probably would be uncomfortable, never mind dangerous, for me to sit in a shitty wheelchair for half an hour in a freezing cold hall way waiting for a the chest x-ray of the day.

Don’t confuse what I’m saying here with a hit on the humans in the system, while I do believe there needs to be a rethink about how they work within it, that is the primary responsibility of healthcare leadership, and there is a deficit of leadership, thus the system perpetuates itself.

“Courage to change the things I can, tolerance to handle the things I can’t and wisdom to know the difference”, so much insight there. I try to do my part to help guide our too often misguided system in a direction that I feel passionate about. My philosophy is simple… it should be about the patient, the person, each individual. We should be empowering people, serving them and supporting them during their times of trial.

One of the ways I share my perspective is through the National Survivorship Working Group, an initiative of the Canadian Partnership Against Cancer. We are a diverse group, which makes for great discussion, and our work is focused on the issue of survivorship care plans. We are looking at plans and models for delivery, and we each bring our own bias to the table, which is natural and healthy really provided you are able to be open.

We met last week, and we were discussing models, which we had done in the past… we got down into the details and I shared one vision of mine which would be to deliver these care plans, to help survivors get back to good in all areas of their life after cancer. It involved my philosophy, make it about the patient, their needs, wants, empower them to take control. I didn’t know but there are even lots of studies supporting the power of patient empowerment… imagine! My view is that Young Adult Cancer Canada is well positioned to be one mechanism for survivors to connect with a care plan, create it and get support as they implement it, live it so to speak. I feel strongly that patients want to be empowered and supported to take control of their recovery as they rebuild from active treatment and the emotional wreck that is often created from dealing with cancer. I was sharing this vision, passionately as always, I seem to know no other way when I get excited. I finished my rambling thought about patient empowerment and a doc sitting at the table said “the revolution is coming.”

I immediately agreed with her, in a very good natured way I was encouraged to hear the word revolution honestly, as I think it is needed. Within a second I realized she was not sharing my enthusiasm but instead appeared to be dreading the thought. Unfortunately I did not have the opportunity to approach her about that comment but believe me when I say, she was right!

The revolution is coming, and I am jacked to be a part of it.

I want you to have sex with Sage

2009-05-20T11:41:14Z

Not literally. She’s so into sex she’s researching it… specifically as it relates to you and other young adults with cancer. You can help…

A few years ago I had the opportunity to head to Camp Mak-a-dream in Montana to speak and be a peer facilitator. It was an awesome experience where I made some great friends and met a ton of incredible people. CMD host at least two programs for young adults with cancer that I’m aware of… you can check them out on Facebook.

One of the other facilitators there was Sage Bolte, a professional counsellor who focused on sexuality and intimacy. I sat in on Sage’s full group presentation and it was awesome. Her talk actually opened my eyes to seeing the difference between sex and intimacy in a way I never had before. After Sage’s talk she fielded questions, and there were lots of questions… she openly addressed everything that came up, everything was fair game with Sage. I could tell very quickly that if you had struggled with any kind of sex/intimacy challenge having someone as open, inviting and informed as Sage would be a huge benefit.

On a personal note Sage and I totally connected and have stayed friends since the CMD conference in 2006 and both our lives have changed dramatically with the growth of our families. However even as a new Mom Sage has continued her work with and for young adults with cancer. She is conducting research for her Ph.D and has a very important survey that will help her help more young adults as it relates to their sexuality and how our systems deal with that issue (as currently many of them don’t deal with it).

Hope you will take the time to help out this super cool lady who is making a big time effort to help us.

Hit the survey here - http://www.sexualselfandcancer.com or at https://vovici.com/wsb.dll/s/15326g3c37c

Keep up the great work Sage and thanks for your help everyone.

Always…
Live life. Love life.
Geoff

RTC Grows-up, Starts to YACC

2009-03-10T00:00:57Z

I remember the night like yesterday, alone in my room on 4 North A in the Health Sciences Centre here in St. John’s. Pretty normal night for me, awake for much of it banging away on my computer, which was the only light in my room. Except this night I wasn’t writing or responding to email I was writing down an idea about my emails and what I might do with them.

I was interrupted by a nurse who came in to check on me, and like Messier calling his shot before winning the Cup in 94, albeit in much less dramatic fashion, I told my nurse to remember her interruption as it had come in the middle of one of my coolest ideas ever. At that moment my fingers were banging out a very rough sketch of what would become RealTime Cancer just over one year later.

My initial vision was to share my story as a young adult dealing with cancer. I always viewed my experiences with cancer as a challenge, and that is what I planned to talk about, challenge.

Away I went.

And now here we are almost eight years later… over 100 school presentations, over 65,000 students reached, three national retreats, two survivor conferences and a growing community of young adults with cancer connected through our events and our web site. Despite our major focus on program development and delivery, thanks to amazing community support we have raised over $1.2M to fund our education and support programs for young adults.

Enough with the reflection… you know what they say about navel gazing and following your nose… you’ll end up with your head in your ass.

The biggest thing is the learning… it’s all about survival and support.

We’ve have many great accomplishments under our belt but I know they will be surpassed by the work we have yet to complete.

With survival rates for young adults with cancer at the same level as in the 1970’s, with only nine young adult cancer support groups in the whole country and with less than 0.1% of new research funding focused our way we feel now is the time for change.

We started as one survivor going to schools to talk about cancer, today we are a strong, united, national organization of young adult cancer patients and survivors committed to make things better for our brothers and sisters of today and tomorrow.

This new expanded vision has its roots firmly planted where they have always been but we felt our brand needed some “reconstructive surgery”, so to speak, to have it better reflect who we are and who we serve… thus we are now Young Adult Cancer Canada.

You have been part of our growth as RealTime Cancer at varying levels and we wanted you to know first. This is an exciting step for us as we assert our position on this issue and intention to challenge the status quo when it comes to young adults and cancer.

Glad you are with us.

Always…

Live life. Love life.

Geoff

Young Adults with Cancer: The Forgotten Generation

2009-03-10T00:00:00Z

In my Own Words!

Last week was a great week for young adults with cancer in Canada… nothing concrete has changed, no new treatment or major shifts in priorities BUT the major issues surrounding young adults and cancer have been given some big time profile. Much needed and much more needed.

This week the Cancer Advocacy Coalition of Canada (CACC), of which I’m a volunteer board member, launched the 10^th Report Card on Cancer in Canada. Within this year’s report was an article I authored, with major help from many, to instigate the dialogue on cancer issues facing young adults. [Check out my article by clicking here!]

Today I will put my article in my own words, which is to say I might swear, certainly will use incorrect grammer (hehe) and get a little more riled up than in the report.

Survival and Survivorship

It is safe to say that these two issues, which are umbrella’s under which many more lie, will be the focus of RealTime Cancer life as an organization going forward. We’ll look at them separately.

Last Halloween I wore this awesome brown ultra suede jacket which was my Dad’s… in the 70’s! (see attached pic, yes I wore a wig too!) When it comes to cancer survival rates, as a young adult it might as well be the 70’s cause our survival rates haven’t changed since then. Yes, not only are Generations X and Y unique for our social appetites and innovative thinking but we are also the only generations that can boast (or bitch) that we have seen none of the advances in medical research in over 30 years (see the graph in my article that looks like a “V”, young adults are in the valley). The kids, adults and seniors have all seen substantial improvement in survival rates, but what about us?

If you’re a pediatric oncologist, looking after the kids, 90% of your patients are under 15, if you’re a medical oncologist, looking after everyone else, more than 90% of your patients are over 40… so young adults are 10% of everyone’s work!

Healthcare is no different than any other area of life in this respect, the 10% gets neglected… cooking dinner for the family is the 90%, cleaning underneath the fridge is the 10%, getting ready for work in the morning – 90%, getting to the gym before work in the morning – 10%, the report due this week – 90%, cleaning underneath the fridge, still 10%... you follow I’m sure.

So survival improvement is nil. My next thought was what are we doing in Canada to improve this. We reviewed all new research funding in 2006, which includes research by the Terry Fox Foundation, Canadian Cancer Society and the federal government, which is the largest contributor, and found… 1 grant, representing less than 0.1% of new research funding focused on a young adult cancer issue.

It was a grant to research fertility preservation, a big issue for young adults, in female patients valued at $61,061 (total research spending was ~$76 million)... here’s where I feel I have to get personal.

Name three prominent cancer survivors, off the top of your head. In Canada of course we’d say Terry Fox, in the US they would certainly name Lance Armstrong and Susan G. Comen and in Aussie land they definitely say pop star Kylie Minogue.

Depending on your NHL loyalty you might also mention Mario Lemieux (as I would!!), Saku Koivu and even if you hate the Leafs you surely know that Jason Blake was diagnosed with leukemia in 2007.

Put the hockey players aside for a moment and you will realize the most prominent cancer survivors ARE young adults. This is irony that hurts.

Back to Survivorship

The other side of this coin is the life side, survival is whether you live or die, survivorship is your life. It’s what happens from the moment you are diagnosed till the moment you go to that tropical island where there are no men and an unlimited supply of Bud Light (if you know the commercial this is funny, but it’s also always been my view of where I’m going next, hehehe).

Now I’ll never say, cause I don’t believe it to be true, that cancer is more difficult for young adults than the kids, adults or seniors, but I’ll beat you into submission, if needed, telling you cancer is different for young adults.

First, most of us have to beg, plead and sometimes demand the mammogram (or applicable test) to investigate the suspicious lump that is not going away because in the eyes of many “you’re too young for cancer”. The 6,500 of us a year inducted into our YA cancer club say we aren’t.

Second once the diagnosis has finally arrived it’s combined with relief and isolation. While the local cancer support group is nice, and I’m sure helpful to many, its not relevant for young adults. Most of us deal with the host of other issues, like a loss of independence, fertility, dating/relationships - I could go on - in total isolation from our survivor peers who truly “get it”. This despite a 2006 study that found YA survivors ranked a connection with other survivors higher than support from family and friends, which is also super important but just not the same.

Third through 100^th and so on… life is different for YA’s, just makes sense the same applies when dealing with cancer.

Why the isolation, because there are only 4 YA support groups run out of cancer centres in the whole country, and even these have restrictions… in Ottawa for example you can’t attend the group unless you are treated at the Ottawa Regional Cancer Centre… don’t get me started on this one… too late… so if you live in Ottawa but have been or are being treated in another hospital you can’t go hang-out with this group. Bureaucratic bull-shit at it’s best.

Now there is another issue here that I raise hesitantly. In part because I feel the case for more resources, which must include better access to clinical trials, more appropriate treatment and major investment in research on diagnosis, treatment and support, is solid in its own right.

But when you consider this next perspective the whole issue is even more significant. Here it goes…

The term “potential years at life lost” (PYLL) describes the true impact of a disease at the societal level. It isn’t the one you hear quoted in the news all the time, as cancer and heart disease take turns as “Canada’s number one killer”. But I argue, and many more besides me with many more letters after their names too, that PYLL is the number that really matters and our spending (i.e. healthcare investment) should be based on it.

I ask what has a greater impact on society, 1000 people dying at the age of 80 or 1000 people dying at the age of 30? This is the concept behind PYLL.

For my article I accessed (through Dr. Tony Miller) the data on PYLL for the ages 0-69 years. YA’s represent less than 10% (there’s that number again) of all cancer cases in the range, BUT we represent almost 30% of the potential years of life lost due to cancer.

Put the massive impact on the individual, their family and their friends aside for only a split second to consider that cancer in YA’s is a societal issue and one that demands attention.

Enough of the “data talk” for a minute… what I’m saying is the time for change is now, and I, along with RealTime Cancer’s growing community and influence, look forward to influencing that change… and I’m prepared to do just about anything to make it happen.

This isn’t the type of issue that gets handled with a few media interviews or a very long email/blog by me… we need help, from individuals and organizations big and small. It is time to take our vision to a whole other level and this week was the start of that journey.

The best thing you can do right now, is talk it up… by reading this info you have knowledge that most health professionals don’t event know.

Thanks for your time, hope it was worth the read.

Always…
Live life. Love life.

Geoff

To 2008, The Best Yet

2009-03-10T00:00:00Z

Happy New Year gang, I hope you had a fantastic holiday season and that you’ve settled into 2008.

My first day back and I’m having trouble getting into to it so I figured I’d come to the keys and see what happens.

As Eddie Vedder’s version of Hard Sun plays on my iTunes I’m reflecting on the past two amazing weeks, which I spent in virtual hibernation. I shut it down on the 21^st, checked email fairly regularly but barely responded and generally shut my brain off, at least for RTC related activities.

While I did have the flu for most of my 2 week vaca it wasn’t too bad and it did keep me close to home with my girls.

Now that I’m back in the “hot seat” I can say with certainty that the feelings I was having yesterday were solid and spot on… those feelings of not wanting to come back to work. First time for everything and this is a first for me, at least at this level.

It isn’t that I had this crazy realization that I hate my job (funny to call it a “job” for me, but technically speaking it is)... more accurately I did have another level of crazy realization of how much I love hanging with my girls, the bigger (and growing one) and the smaller (but also growing one).

I don’t know if every Dad feels this way, but I hope so.

These past two weeks, where I could sleep until I heard the quiet talking of Adia through her monitor, go out and see her sitting in her crib playing on her own, take her up and wrap the 6.5 feet of arms I have around her, change her bum and go get some breakfast for her… then sit on the living room floor with her as we catch up on the scores from the previous night and have some juice, or tear around the house as she explored. Our days were full, but not too full, and we didn’t really do anything that different from a normal Saturday, except that we got to do it every day and that is the difference.

Karen and I are blessed to have her parents take care of Adia during the days when we are at work, which has been since the beginning of the school year when Karen returned to teach Junior High. My absence from Adia’s early days has been an issue for me but for some reason since Karen returned to work it’s been heightened.

I traveled way too much during Adia’s first 14 months, and it is something I will change going forward. When I am home, most days I see her for at best an hour in the morning and a few hours in the evening… the same for most working parents of “9 to 5’s” I’m sure.

But what if that isn’t good enough for me?

Recently my family Doc closed her practice, as far as I know she is now working four mornings a week in the hospital and one full day at a nursing home. Imagine redefining, or perhaps defining for the first time, what work-life balance means?

It is something I have been aware of for a long time, my constant struggle with this work-life balance issue. Adia’s arrival has put this in a new light for me and it’s all good.

At the 2007 RealTime Cancer Survivor Conference we had a great presentation from a survivor buddy of mine in which she referenced the metaphor of the glass jar with rocks, pebbles and sand. The rocks represent the really important stuff (family, friends, health, etc), pebbles less important but still significant stuff (career, leisure, etc) and the sand the much less important things (the lawn, dishes or the tile in the basement ceiling – not that I have a missing tile in my basement ceiling!). This is a popular analogy that many of you have likely heard… the demonstration/discussion asks how you fill your jar?

If you put the sand in first it will fill the jar leaving no room for the truly important things in life but if you put the rocks in first, then the pebbles and then the sand you can fill your jar comfortably.

When demonstrated it is very powerful and effectively communicates a great message about balance. The rocks are basically representing your time, how do you spend it?

These past two weeks I spent my time on the big rocks and it reminded me how much I love them. So as I hit the early part of 2008 I am setting my intention that it will be my best yet, with a full jar of rocks, pebbles and sand.

Always…

Live life. Love life.

Geoff

Pizza of…

2009-03-10T00:00:00Z

...Reintrajectorization!

And you’re saying, what the hell is that? Perfectly good question and of course I’ll explain.

At RealTime Cancer’s Retreat Yourself 2005, we had 27 survivors from across Canada here in Newfoundland. On the first night we were identifying the key issues we faced as young adults dealing with cancer. Travis Gobeil, a survivor buddy from Ontario, coined the terms “disintrajectorization” and “reintrajectorization”.

In case it isn’t readily apparent what they mean… disintrajectorization is all the crap that goes down when your cancer diagnosis arrives, it is the disconnection from the life you had been leading up to that point, which may or may not involve a dissection from all the things, people and goals that were in your life the minute before cancer arrived officially. On the other end is reintrajectorization, which is the process of reconnecting, reentering if you will, your old life, or some reasonable and hopefully much more amazing version of it!

A month ago I was in Calgary at RealTime Cancer’s Survivor Conference, with 30 young adult survivors, 4-5 facilitators and two of the ladies from our office. We were there to help survivors make a plan to ensure the rest of their life is the best of their life. In a time when so many are chasing a “cure” I feel that sometimes the challenges of survivorship, the time after treatment, are overlooked. Cancer doesn’t end when the chemo stops, the whole experience, good, bad, triumphs and challenges are present long after we leave the cancer clinic. A big part of our mission is to help with that process… help young adult survivors “reintrajectorize”.

The Survivor Conference program was based on the concept of a “wheel of life”, which has a variety of pieces, such as family/friends, community, physical health, etc. We customized the “wheel” and made it the wheel of “reintrajectorization” as that was the focus of the conference, reintrajectorizing. I thought my wheel looked like a pizza, so I customized mine a little further. Thus the subject of this message.

Ok, enough background; which you know I like to give!!

To start the event we all ranked ourselves in the 8 areas of the wheel. Throughout the weekend we had sessions focusing specific areas of the wheel and ultimately started to outline steps/actions we could take to help enhance, if not balance, our wheel. During this process and the course of the weekend I participated in a variety of discussions relating to balance and the question of should our wheels be balanced, i.e. when we do our rankings, which start with a 0 at the centre of the wheel and a 10 at the perimeter, should our main objective be to have a round wheel?

As much fun as it may be for those of us who love their work, is it healthy to have work rated a 10 at the expense of physical health or family/friends which may be a 2 or 3?

On the surface that seems to be an easy question, but another consideration could be that some of us are ok with one or many areas ranking lower than others. But the point of my wonder is not about whether we’re ok with that, but rather, is it the “best” path forward? (i.e. is it the path that is most sustainable and most likely to lead to a happy and fulfilling life?)

To my surprise I think by the end of the Survivor Conference I had worked myself to a place where I felt, with great conviction, that the “best” wheels are those that are well-rounded, no major valleys or bumps. In other words we should all be striving to have a round wheel, or balanced life.

Yes that is a question, as I don’t have the answer, perhaps you do. I know my Dad has suggested the concept of moderation to me several million times… I still struggle with it. The continued evolution of this for me is that as I get older (which is not the same as growing up) I am having many experiences that reinforce this balance concept.

What’s right for you or anyone else? Really that is a personal choice. The very important part for me is that we make that choice consciously, as opposed to unconsciously. The review of my wheel of reintrajectorization was another reminder for me to review priorities, the choices I’m making and see how smooth a ride I’m having and will have if I keep things the way they are.

My reality is things have to change, and they will.

Always…

Live life. Love life.

Geoff

What a Year!

2009-03-10T00:00:00Z

And I’m back, for real and regularly.

Yes it was an amazing year, and one that I’m wanting to share, especially given my failure to do so in ‘real time’ (hehe) as has been my custom.

Last you heard from me that Karen was very pregnant and due on October 12th. Our little girl, Adia, arrived on October 6th, after we learned she was breech two days previous. We had an abrupt welcome to parenthood as she got a ‘staph’ infection in the hospital, spent 5 days in the NICU with 20% of her skin blistering off. She recovered, but her parents are still a little scarred I think. And due to her breech position her hips were dislocated, which meant she wore a harness for 4 months, literally all the time (bathing and diapers were a challenge!!) and a night-time brace for three.

These are really relatively minor obstacles in hindsight but they didn’t seem that way at the time.

Today Adia is a happy, very healthy, extremely out-going, fun little girl. She turned one on Saturday and we had a great birthday party with some of her friends… just the close ones, couldn’t include the millions of friends she makes every time we go to the grocery store.

Amazing how your definition of ‘birthday party’ changes in just a year. A little over a year ago I’d likely be talking about an all night party with a very late sleep-in. Even in my survivorship state birthday parties were a good excuse to get out and pretend I was still in university. Now it means being up at 6:00 am for the day and in bed by 10 that night.

Adia has certainly been the major highlight of the past year, but not the only one. I learned just how well I can function on next to no sleep, and I found a whole other gear, between increasing demands at work and an exponential increase in demands at home the pace has picked up.

My health continues to be solid as I recommitted to the gym and continue to work to find balance. I got back to the soccer pitch this summer, learned that I’m neither as quick nor as durable as I once was. How much of that is related to cancer I don’t know. There’s room for improvement on my conditioning that’s for sure.

RealTime Cancer is making great progress, but for the past year or two it doesn’t seem as ‘great’ as I’d like… perhaps much of this is related to my lack of patience but I feel we have been due to take a HUGE leap forward that just hasn’t happened yet. It will, I know this, but I can truthfully say that for the first time in my professional life, my professional life hasn’t been as fulfilling as desired.

It is as simple as my daily activity is spent doing too much of what I don’t like, and not enough of what I love. My belief is also, that the things I love are the things at which I excel, and conversely the things I don’t like are things I’m not very good at. My inexperience at building an organization is certainly a major reason behind this and fortunately I do learn and am slowly working towards getting my professional life back to where I have envisioned it for so long.

Back to the personal side for a moment… if you have never read my article covering fertility and our first pregnancy on the RealTime Cancer web site and are interested to know the story I’d encourage you to check out this link (http://www.realtimecancer.org/ArticleDetails.asp?ArticleID=39).

My life is a miracle, the fact I’m here to write this… but the birth of Adia really brings that to another level. It is something I sit with and wonder about often.

Having said that would you believe me if I told you that Karen is pregnant again!!?? Yes I would not joke, the craziness continues… I often joke with Karen that I’m going back to schools with a much different message this year, something along the lines of ‘if I can do it, anyone can… so wrap it up!’

Kidding, about the different message, but yes I continue to sit in wonder and amazement as life spirals incredibly out of control.

And on that note I’m going to shut this down, but I will be back again soon.

Always…
Live life. Love life.

Geoff