"Even if we could raise $1M I wouldn’t want to put that in a $100M pot for cancer research. I know we can change more lives using it for support."
That thought guided my intentions in the earliest days of YACC, before we had raised a dime, or were incorporated, even. Back then I thought about "even if" we could raise a million. It seemed so far away. Not that I felt it was unattainable, it was just a long way away from the ~$40K we raised in 2000-2001, our first year of operation.
We hosted our first "YACC to the Future" event this morning to report on the awesome 2011-12 year of YACC, which included hitting the $1M mark in revenue—a nice milestone to add to our collection. I hope you enjoyed that moment of reflection, because it was enough for me!
As you would expect, we adjusted our sights as YACC grew. Today, we also shared some of our vision for the future. Here are a few captions from my speech this morning:
1. Demand - Demand for face-face programs is up even as we increase capacity.
2. Deficit - There is a massive deficit of resources focused on YA's across the cancer continuum—no research agenda (0.08 per cent of cancer research focused on YA's), no local support (five local groups in the country), and no national infrastructure like in the pediatric and adult health systems. In fact, we are 10 per cent of the patients in each system, which means we are the focus of no one.
3. Desire - Our collective desire to make change happen—one life at a time at the individual level, and within the provincial, national, and international cancer systems.
Our board-developed strategic plan guides YACC’s operations through to 2016. These five points are a few of the highlights and major areas of focus for us going forward today:
1. Increase program capacity to meet growing demand
2. Increase revenue by 400 per cent by 2016 to $4.4M. This is the most ambitious part of our plan. I do not doubt we will reach this $4.4M revenue mark; the timing may vary from our plan, but the clear assertion we are making is that growth is a priority as there can be no expansion of programs without it.
3. Excellence – Operationally, systems, performance management, and progressive culture are some of the key areas for development. My ultimate goal when starting YACC was to build something that would be around long after I was, that goal still drives me.
4. Partners – We would not be here without them. We will continue to nurture our great partnerships, cultivate new partnerships across the spectrum of our operation, from program delivery, to fund development and awareness. They are an essential element of our plan moving forward.
5. Research - YACC is uniquely positioned, because of the reach of our existing programs and network in Canada, to generate knowledge that will benefit generations of young adults dealing with cancer in Canada and all over the world.
I speak of dreams all the time and how important they are. I believe this in my core. YACC has a great dream and we’re going to have a great time chasing it!
Live life. Love life.
I had no idea I wasn’t the only one. Intellectually it made sense I wasn’t but the observation of my immediate surroundings strongly suggested I was.
No one in my family had cancer in their twenties. None of my buddies had cancer. I heard about a few classmates from school but never really knew how much was rumour and how much was true.
Sure, I would eventually meet other young adults with cancer, but not many, and not often.
Isolation is worse when it’s unnecessary like mine was. If you are a young adult with cancer, your isolation is unnecessary, too.
Imagine my surprise when I learned that there were 7,000 young adults just like me that year. 7,000 who had their tracks changed, dreams delayed or destroyed, education or career paused or stopped altogether. 7,000 young adults who suddenly or—in the case of many—finally after months and months of misdiagnoses, came face to face with the very real possibility of their death 50 to 60 years before they were planning on it.
While 7,000 is a big number for sure we are not the majority in the cancer clinic (thankfully). Minority status comes with few "benefits" for young adults with cancer: no specialized care, super-low clinical trial participation, next to no focused research on our issues, medical or otherwise, and barely a support group in the whole country for us to help move out of that isolation.
Not fair to say “no” benefits I suppose; I am no longer afraid of needles. That’s what having 1,427,843 needles will do. I do have reduced lung capacity, a dropped foot from ICU and, of course, I’m prone to freak-outs and a spiral of relapse thoughts brought on by the slightest of ailments or changes in my body.
I am fond of my new perspective on life, as it truly does have new parts. I wouldn’t trade those experiences for anything. But the isolation! That is something you could have taken from me at any time.
It is Young Adult Cancer Canada’s main priority to eliminate the isolation for the 7,000 young adults diagnosed this year and the tens of thousands living beyond their experience just like me.
At Survivor Conference 2012, more than 100 survivors, supporters, and staff, will tackle seven kilometers for the 7,000 young adults that will be thrust into isolation this year.
We will spend the rest of our year bringing them out of that isolation and into network—a transition that will be life-changing for them, like it was for me.
Live life. Love life.
The calendar is filled with dates that spark distinct memories for us all: birthdays, anniversaries, etc. August 13 is one for me as it was one of a few times when my dad took over my email group and wrote a message to my friends on my behalf while I was in a coma in ICU.
Keep the rear-view mirror adjusted appropriately; it’s important to know where you have been as it helps you appreciate where you are.
It's Fraser still filling in for Geoff. I’m definitely not going to put words in Geoff’s mouth, but I do want to give you a quick update on his condition and progress. Since the last news on August 5, Geoff has been in critical condition in the ICU. He has been heavily sedated for the whole time and his body has been struggling to repair the damages caused by the infection he had. He has made some progress. His team of doctors (O’Brien, Fox, Scully, Hutchinson, Adams, Peters)—and a whole incredible group of other health care professionals way too numerous to mention—have been working, evaluating, encouraging, treating, and caring for Geoff like the true professionals they are. They have also been great to all his family as we’ve been watching, feeling somewhat helpless as Geoff struggles through this.
Geoff is still heavily sedated and is not responsive to any words or touches yet, but he is getting a little more active as the sedatives being used are changed. Yesterday several drugs were removed from his treatment plan as the infections are now considered gone. He’s got a long recuperation ahead of him (measured in months, not days or weeks) and still a considerable stay in the ICU. He has progressed as well as the doctors' greatest expectations, which I’ve come to almost expect. He has had lots of good days as well as bad, and he’ll have lots more. He’s not off the critical list yet as any slight infection at all could be life-threatening, and he’s totally reliant on the life support system still.
On the good side he has met the doctors’ highest expectations as far as healing is concerned. We have been reading all the messages you have been sending, and will continue to do so if you want to pass on a thought or prayer. I KNOW they make a difference and can feel that he’s sensing them if not hearing and responding to them. As his sedation is reduced over the next few weeks, he’ll be more aware and able to communicate through gestures, and eventually through writing.
Thanks to all of you for your positive thoughts, prayers, and good deeds. They have meant so much to all his family.
Since I can remember, I’ve loved rock and roll. John Mellencamp has been a regular in my CD player (now iPod) since high school. I've often said that one day, John Mellencamp would play a private show in my rec room.
Too date, no private show. I remain a faithful fan of his tunes.
Music was a huge part of my cancer experience. It was always on in my hospital rooms—even travelling with me through the hospital at times—including to the basement of Princess Margaret Hospital for my lifetime dose of full body radiation the morning of my bone marrow transplant on April 13, 1999. (I listened to the Lonesome Jubilee album while they cooked me.)
In the spring of 1999, I was in Toronto recovering from my first bone marrow transplant. After a month in protective isolation, I was let out into “transplant freedom,” which differs slightly from the freedom I know today: a low microbial diet, no fast food or restaurants of any kind, no crowds, and definitely no people with communicable infections.
The time after a bone marrow transplant is very sensitive. The procedure involves the removal of the immune system with chemo and radiation, and the “giving” of a new one, which in my case was 1.2 liters of my dad’s bone marrow.
You can imagine the dilemma I faced, while in transplant freedom, when I learned that John Mellencamp would be in Toronto in June (13 years ago!).
Should I go?
Great question. The answer of course depends on whom you ask. My docs likely would have said "no," which is why I didn’t ask them. My psychologist, had I had one, would have said "yes" as they surely would have been aware of the emotional trauma I would have been dealing with had I not gone.
Sometimes, and not just every now and then in my opinion, you have to “roll the dice.” I did—and it was awesome!
I didn’t get an infection from the show, so Mellencamp didn’t really almost kill me, but I thought the title would grab your attention!
The following month, July 1999, I returned home to the Rock from Toronto with stable blood levels and an immune system that was sparring with me a little, resulting in a common transplant condition called Graft versus Host Disease (GVHD).
Later that month on a summery Saturday night, while cleaning and flushing the Hickman catheter in my chest, I unknowingly flushed an infection into my blood stream. My new immune system could not handle it.
I was in the ER within hours with a rising temp and the most terrible pain I’ve ever known. I was in the ICU by the end of the day. By the end of the week, I was placed in a drug-induced coma and on life support.
Turns out, in my case the bacteria on me were more dangerous than those at the concert—not an uncommon reality for many transplant patients.
I was heavily sedated, and (according to docs) totally unaware of my surroundings. The infection in my catheter caused a lot of trouble: I went into septic shock, I was diagnosed with Acute Respiratory Distress Syndrome, and other secondary infections kept the medical team challenged.
I was given less than a two per cent chance of ever coming out of ICU.
While asleep, I was the focus of so many people’s love and energy. Family members were constantly there with me. Buddies held vigil in the waiting room, few of them getting the chance to see me in my isolation room in the ICU.
In an effort to create an atmosphere that was familiar and comfortable, my best buddy’s little sister offered up her CD player (thanks to the universe, she is now my wife).
I was in ICU for a month and on life support for three and a half weeks. I had many close calls during that time, my vitals were monitored around the clock, and legend has it that my heart rate jumped anytime Mellencamp was playing.
This time, John was definitely playing with my health so the decision was made to turn off the Mellencamp.
It was a while before I asked for my music after I woke up from my coma, though I still remember the CD player on the windowsill in my room.
It’s been 13 years since I was in ICU. My cancer returned in 2001; I had another bone marrow transplant, and today I’m healthy and am having the time of my life chasing my dreams.
Despite years of fertility issues, I am the dad to three amazing little kids.
The first song each of them heard was my very poor rendition of “Your Life Is Now” in the delivery room as soon as the nurse passed them to me.
John Mellencamp has been a huge part of my life before, during, and after cancer and I am jacked to see him live tomorrow, 13 years after I first rolled the dice to hear his tunes in concert. I know my heart rate will be jumping this weekend!
Your life is now.
Live life. Love life.
Thirteen years ago this month I lost my first cancer buddy. I remember him annually at his family’s memorial walk, which benefits Young Adult Cancer Canada, and many other days during the year. Today is another.
In my early days of my cancer journey I reacted with sadness and anger to loosing a buddy to cancer. Part of this was the reminder of how close I could be to joining them, part of it was the question “why us,” part of it was a feeling it just wasn’t fair.
I immediately went to my keyboard to express my anger and—at times—sadness. This practice ensued for years. As personal growth brought perspective and I gained experience dealing with death, I allowed myself a little bit more time to process and just “be.”
However my initial reaction remains largely intact today as I focus on channeling my anger and sadness into my work. Is this truth an example of me avoiding death or have I evolved to a place where I can use that energy to help myself and others?
Like the mystery surrounding death itself, that question is one for which I have no definitive answer.
We’ve lost a lot of survivors from YACC’s family in the past month; each one is different, each one is tough. Their deaths prompt internal reflection, and without guilt, I do ask why I’m still here. I find it difficult not to ask that question. Fortunately the answers come as easily as the question.
It is extreme to say that I’m driven by death, but it's fair to say death drives me.
Today it drives me to remember some great friends, give thanks for their time in my life and, most of all, to be thankful for being here today.
Hug someone you love.
Live life. Love life.
It has been months now but I still can’t get this conversation out of my head. It was with a very nice nurse at a conference in the fall of 2011. I had just finished a keynote presentation, “1% is not 0%,” where I shared some of my story and lessons learned dealing with the health system.
I was approached by a lady who had seen both my keynote and the workshop session I had done in the morning on YACC. She was kind and had a point to make with me. She explained she sees young adults in her clinic all the time but how she rarely refers them to YACC as her assessment didn’t determine the need for a social work consultation, thus, they must be doing ok. She could now see the error of her ways and the value of connecting every young adult to YACC regardless of how dire—or manageable—their situation.
It was a well-disguised win.
It’s great that we converted another nurse, but as I often do, I wondered how many others are caught with their patient assessment template between their faces and the patients in front of them. How many other nurses and docs are assessing us, our emotional well-being and figuring, “Hey! No flags here, he probably wouldn’t benefit from connecting with YACC”?
I’m sure it doesn’t shake down like that. I’m sure they are immersed in their screening tool, somewhat overwhelmed by the load of patients in the waiting room and when no flags are raised, they move on.
The growing patient-centered movement holds promise. But if health professionals can’t keep the patient who is in front of them, well, in front of them, then we can’t connect as people to understand what’s happening within and beyond the assessment tools, and then we miss the mark on patient-centered care.
The essential step required to achieve patient-centered care is for every single person in the health system to be patient-present.
Live life. Love life.
Hope your 2011 has been great and that your 2012 will be your best year yet! I wouldn’t have had it any other way, at home or at work.
The reflective moments to relish success or former days of glory are fun but not frequent. Life has taught me to save time for those moments, but today has no time for reflection on the past. With YACC’s team, momentum, and plan for the future, it’s easy to understand why the future is our focus.
A few weeks ago the YACC board of directors approved a new five-year strategic plan.
You would easily identify many of the big items: growth of programs reaching many more young adults, growth of the Shave for the Brave to new markets, growth of partnerships and sponsors who believe in our work, and enhanced engagement of survivors and young adults in our work.
Anyone who follows YACC would not be surprised to see a theme of growth.
Anyone who knows the issues facing young adults with cancer and the major deficit of customized resources for this population would understand the reason for our growth.
What you likely wouldn’t know is how ambitious our plans are.
After my first transplant, my docs told me my risk for relapse would drop substantially at my two-year anniversary. I focused my energy on that anniversary; I regularly visualized "clinching the cup" at my celebration party; and on April 13, 2001, I celebrated. A few weeks later, my blood levels started to slowly drop; three months later my leukemia relapsed.
Lesson: Aim high.
I focused on my goal, put all my energy into it, and I nailed it. Better to aim high and miss than to aim low and nail it.
I’ve taken that personal lesson and applied it to YACC. Our new strategic plan aims to grow revenue by 500 per cent over the next five years to $4.4M in 2016.
Like I said, ambitious.
In July this year we opened registration for YACC’s 2011 Survivor Conference with two emails to our health partners across the country. We had 100 applications for 80 spots. We stopped promotion three months before the event. The Conference was an incredible milestone for YACC: It was our biggest support event yet.
The demand for our programs is driving our ambitious planning. Some might say we’re crazy to project that kind of growth. We are crazy about changing lives, and from my seat our plan is even more essential than ambitious. I bet the young adults who have yet to experience a YACC support event would agree with me.
Here’s to a fantastic holiday season with a little time to reflect on the wins you've had in 2011.
Live life. Love life.
It is no coincidence that I am celebrating the 10th anniversary of my second transplant on Thanksgiving weekend. It has been the most amazing 10 years; to say I am thankful for them is a gigantic understatement.
Here are a few people I'd like to thank for helping me achieve this milestone:
10. My docs and other health advisors: You have provided information and guidance. You provided hope, and when you didn’t provide hope, you provided motivation for me to beat the odds. Thank you.
9. Mentors and colleagues: Your gift of time, wisdom, energy, commitment, and friendship has changed my life and helped enhance YACC’s efforts to change the lives of others. Thank you.
8. Survivor buddies: The courage you display in the face of such massive adversity is inspiring; your honesty and willingness to help others is a gift to me and all those in YACC’s survivor family. Thank you.
7. Friends: “If you have one true friend, you have more than your share.” – Thomas Fuller. I have several true friends from before, through, and beyond my cancer challenges. You make the valleys more bearable and the peaks more enjoyable. Thank you.
6. Family: One of the keys to my survival. I would not be here without your love and support--literally. Thank you.
5. Dad: Most dads give their children the gift of life once, my dad has done it three times. Dad, your stem cells have enabled me to live the most incredible 10 years. Here’s to many more decades of amazing. Thank you.
4. Kane: Your smile and laugh light me up. Your naps on my chest are one of my favourite things. You have brought out such love from your sisters and given Mommy and me a renewed appreciation for the blessings in our life, especially the three major ones. You are the happiest most easy-going baby ever and I love you forever and for always. Thank you.
3. Mira: Your sensitivity and thoughtfulness provides an important example for me every day. I love that you love dancing with me, cuddling with me first thing in the morning, and taking turns feeding each other at meal times. You are the sweetest thing in my life and I love you forever and for always. Thank you.
2. Adia: Your birth was the second miracle (of four) in my life. You pushed my boundary of hope. You are precocious, girly, and a great big sister and I love you for it. I love that you love dancing with me, climbing all over me, and making art for my office. You are the sweetest thing in my life and I love you forever and for always. Thank you.
1. Karen: Before I fell in love with you, I was living with a two-year deadline, expecting my cancer to come back for the third and final time. You opened my heart when it was closed; you pushed me to live more in my heart and less in my head; and you are an amazing wife, mom, and friend. You are more beautiful inside than out, and you know how hot I think you are! I love you forever and for always. Thank you.
I’ve always loved the tune "Lucky Man" from The Verve, long before I had any idea just how lucky I am.
A decade into this remission, the best decade of my life, here’s to many more decades.
Live life. Love life.
I busted out laughing the first time I saw a trailer for 50/50. My laughs were interrupted by flashbacks prompted by scenes mirroring my life during diagnosis, active treatment and recovery such as shaving my head and the feeling of being “fine” (a.k.a. numb).
I loved the film. It feels like an authentic account of a young adult’s journey through cancer. However there is one glaring omission that requires clarity, in my opinion.
The film does a great job of representing so many of the major issues facing young adults dealing with cancer. Adam, the survivor, is encompassed by a “fog” upon hearing the “C” word, which is immediately combined with a trip to Google for more info. The relationship challenges—parental, intimate, and friendly—are featured prominently in the story. The chemo-room—a right of passage for all young adult survivors—features friendly survivors who likely graduated with our parents or grandparents.
Rage makes an appearance, and it was great to see. Great because it’s real, and it’s even better that Will Reiser (the writer of the screenplay and a survivor) had the courage to include this, which almost gives permission for other guy survivors to let that out. For many of us, including me, that doesn’t come easily.
Kyle’s (Seth Rogan) effort to connect with his friend, despite his immaturity, is a testament to all of those friends of ours who made huge effort to understand, be there, and help in any way they could. If you had even one of these friends, you were blessed.
While I laughed my ass off watching the trailer, it prompted me to wonder where my buddies got those clippers they used to shave my head prior to starting chemo! I still haven’t gotten a definitive answer.
I laughed while I watched the movie, and truly loved how so many of the scenes were as if they were written based on my story, not Will’s. Reality is that as young adults dealing with cancer our stories have much more in common than not. 50/50 sheds light on so many of these points of connection between young adults. This is a great service for the young adult cancer movement.
While it is authentic on so many fronts, the major issue I have with this film is that the uninformed masses who watch 50/50 will leave misinformed on the number one issue facing young adults after diagnosis: Isolation.
This, THE NUMBER ONE issue faced after diagnosis, wasn’t raised.
Challenges with fertility, friendship, loss of career, and fear of dying as you are just starting to live are important messages for the masses to hear and understand, but I feel a responsibility to ensure they know these issues—and many more—are so much heavier when wrapped in a blanket of isolation from other young adults with cancer.
Isolation from other young adults with cancer is the defining element of a young adults experience with cancer. Superhero researcher Dr. Brad Zebrack’s 2006 research showed we want to connect with other young adult survivors more than we want support from anyone else. In fact, his study showed 100 per cent of young adult survivors put opportunities to meet with other young adult survivors as a top 5 need (support from family and friends was a top 5 issue for 62 per cent of those same survivors).
YACC is dedicated to eliminating the isolation for young adults with cancer, and although 50/50 doesn’t address this issue, we thought the movie itself was a fantastic opportunity to connect our current network of survivors with more of the thousands not yet in our network.
This opportunity lead to the Give or Get campaign (www.giveorget.ca) which will see young adult survivors across the country connect and watch 50/50 together.
If you, or someone you know, was diagnosed with cancer between 15-39 please share the campaign site with them so they can request a ticket. If you have $12.75 to buy a ticket so a survivor can see the film, that would be awesome too!
A gift of $12.75 will give a young adult a ticket to a movie, but more importantly, it’s a ticket to a network of peers who truly get what they are living.
50/50 isn’t just raising the issues facing young adults with cancer, it will bring hundreds more of them out of isolation and that not so simple step will change their life forever.
Live life. Love life.
"If you use all your energy for living, you have none left for healing."
My mom told me that when I was recovering from my first and second transplants.
I believe it is a truth that relates to everyone, regardless of the presence of health challenges, physical or emotional.
I really felt early into my second cancer experience that a large part of the reason I faced a relapse was my failure to learn the lesson of balance. Balancing work and play, pushing and resting, ambition and acceptance.
Balance is a funny concept as its subjectivity makes it virtually useless as a goal unless it's well defined. Before cancer, balance was finding the path to fit all of my activities into the day, it never meant choosing my priorities. My priority was always to do everything, especially when it came to sports and socializing.
My relapse taught me the lesson of balance, and while the subjectivity of the concept remains, my definition has evolved considerably while I’ve maintained my commitment to it. There are times of failure, but I’m human and am fine with that as long as it’s not perpetuated for extended periods.
My ambition continues to be the greatest test of my commitment to balance, even as Karen and I raise our three awesome kids, who are four and under.
Recently I sent a note to a fellow survivor who I felt may have been in a conflict with ambition. I shared my mom's advice and explained how I had to learn the lesson of balance the hard way. Hearing of Jack Layton's passing this week brought the same train of thought as when I wrote that survivor.
Those of us with great ambition and great health challenges must be aware that our ambition is an amazing force that can be used to create beautiful things. The same ambition can be our most dangerous foe, more dangerous than our fragile health.
Choices would be easier to make it you could see far down the path of each, but of course all we can do is make the best call possible in the present moment.
When our clock stops, we are responsible for the choices we make and we will see the results of those choices in our life, no matter how short or long, and our legacy.
While a long life may be a common ambition, it is living, not life, that matters most.
Live life. Love life.