Sweet 17

Have you ever missed a child's birthday party? Or even when present, how many of us understand how truly fortunate we are just to be there, and savour every moment?

Last Saturday night, my daughter's friends threw a surprise party for her 17th birthday, another milestone and joy which I am so fortunate to have experienced. Cancer teaches us many things, the fragility of life and the loneliness of suffering, and more positively the value of hope and strength. More than anything however, cancer teaches us that life is a gift, that every moment and joy must be savoured.

That is why I am embarking on my trip, Survival and life, and everything the last five years has given me and my family, is too great not to be celebrated.

I am now firming up the exact dates for my trip and this week I am sending a second letter out to all of those who I hope will cycle with me. I plan to leave Montreal on April 19, 2010, dip my foot in the Atlantic Ocean at St-Nazaire, France on April 21, 2010, clip my feet into my pedals and start cycling. I am going to do the first nine stages of the Velo-6 bike route, which is found at the following link: http://www.eurovelo6.org/bicycle-ride, consisting of the following:

Weeks 1 and 2 - April 19 to May 2 - stages 1, 2 and 3
Le Val de Loire, Loire Natures et Rives de Bourgogne - France
950 kms

Weeks 3 and 4 - May 3 to 17 - stages 4, 5, 6 and 7

Vallée du Doubs et Haute Alsace, Vallée du Rhin, Lac De Constance et Haut-Danube, and Danube Bavarois
France, Switzerland and Germany
980 kms

Week 5 - May 17 to 23 - 8th stage
Passau-Vienne
Germany and Austria
350 kms

Week 6 - May 24 to 31 - 9th stage
Vienne-Budapest
Austria and Hungary

310 kms

Total Kilometres - 2590

It's all part of surviving leukemia.

When you've survived leukemia, a sore elbow is nothing!

I haven't said much about my health in this blog, mostly because it's been great. In fact, since my transplant almost five years ago, I have been healthier than at any previous time, it seems that my immune system is very strong, perhaps stronger than ever. When everyone else is suffering from colds or whatever, I am fine.

Last week, I was exercising and while I was lifting weights I had a pretty sharp pain in my elbow. I had fallen about a month ago and cut the back of my elbow, and I went to a mirror to see if perhaps the cut had opened up. I was surprised to see that the back of my elbow was swollen to about the size of a golf ball, if not larger. I went to see a physiotherapist at the sports medicine clinic at the sports club where I exercise and he told me it was a bursitis and that the swelling was fluid, and that I should ice it, apply a compression bandage and it would get better. I did this for a few days and aside from the swelling, which reminds me of an alien growth (where is Ellen Ripley when you need her?), it didn't really bother me very much until Thursday when I woke up and it was sore and a little red, and warm to the touch. I feared an infection so I went to my hospital, Maisonneuve Rosemont, where I am pleased to say I was very well treated. I had my blood tested and my blood work is normal (hence my mantra – my body is a temple). While I have a bursitis, it's not infected and I have been prescribed Celebrex, an anti-inflammatory . In ten days, I should be as good as new. More importantly, I ran into one of my doctors, to whom I had sent an invitation for my trip, and he told me he thought it was a great idea and that he was planning to participate, perhaps for the last leg from Vienna to Budapest. Even better, he is trying to interest other doctors to come along. That would be wonderful, a real victory and celebration.

I've added a link on the right to the Velo-6 route and I plan to do the first 9 stages from the coast of France to Budapest. I am then going to continue off the route for a further 200 kilometres to Tolzva, the home of my maternal great grandparents and, until they immigrated to Canada, my grandparents.

As I was driving to the hospital this morning, I was thinking about how I would react if the results to blood tests were bad. It led me to reflect on how appreciative I am for the almost five years I have had since my transplant.

I feel an overwhelming gratitude for the second life I have been given. I remember being in the hospital after I was diagnosed in 2004 and being ready "to settle" for maybe just a year, a two or three of good health. I have had much more and I am looking forward to many more years. If however it is not to be, then I am thankful for what I have had. As I said in one of my earlier postings, that's what leukemia does to you, and it's not a bad thing.

I am very excited about the prospect of my doctors coming along with me on my cycle. I believe this will be an extraordinary experience. It's all part of surviving leukemia.

Every Person Needs A Plan

The key to many things, including raising money, is leverage. There's only so much you can do with your own hands and I therefore hope to enlist others to bike with me (for the whole trip, for a week or two, or for even a few days) and help me raise money. I’ve I sent out my first letters, to roughly 25 people who I think might be willing to help and thus far the reaction has been heartwarming. My intrepid kayaking partner Serge is going to drive the van, be Mr Fix-it, and bike to boot! My good friend and client, Wes from Toronto has committed to bike with me for at least the last 2 weeks of May (when I will be in Austria then Hungary!) and will help me raise money. Claude, Raynold, Garry, Jean-François and Wayne have all told me that they will do their best to bike with me for at least a period of time and I hope they will all help me raise money as well. Others have replied that they will do what they can to help, and Lenny, my friend and the owner of Montreal’s famous Moishes steakhouse (http://www.moishes.ca/ - the best steak in town!), has even agreed to send letters to his biking friends. I want to raise at least $250,000 between now and my trip and, obviously, the more people helping the better.

Over the next couple of weeks I am going to continue to send letters to people who I think might be interested in biking or helping me actively raise funds, and early in the New Year I expect to start soliciting donations from everyone I know. If anyone reading this wants to help, please let me know.

I am also looking for equipment sponsors for the trip (I would love to have two spare bikes for people who come), the more the merrier.

Every day I realize how lucky I am. Last week my son Phil had his braces removed (hence the above photo) and my daughter Julianne received the proofs of her high school graduation photos. For other people, these might be everyday events, flashing by without recognition. For me, and other survivors, it's different. These are days and events which we didn't expect to see, they are gifts to be savored.

A Sad Day

Glenn Gleason died today. He was 41 years old.

Glen, who lived in the Philadelphia area, was diagnosed with Acute Myeloid Luekemia in 2007. He believed that helping other cancer patients is one of the true gifts of survival. His leukemia relapsed in the Spring of 2009, and he received a bone marrow transplant in July 2009. He and his wife Amy are the leaders of Team Gleason, their blog is at http://www.teamgleason.com/. Team Gleason will always remain an inspiration.

Although I have never met or even spoken to Glenn or Amy or their family, I have followed their Team Gleason blog and share their grief, and I will think of them often.

Leukemia brings people together, and tears them apart.

It makes me want to scream, but most of all it makes me want to fight. Leukemia must be beaten.

Yahrzeit

Today is my Father's yahrzeit, the anniversary of his death according to the Jewish calender, a memorial day. He died of leukemia, I was spared.

I remember and give thanks. Its warm on one side and cold on the other.

A big day at my day job

I was privileged yesterday to appear before the Supreme Court of Canada as part of ‘my day job’ as a commercial litigation lawyer (a barrister, as they say in England). I was representing The Globe and Mail, Canada's pre-eminent national newspaper, in an appeal before Canada's highest court, relating to whether or not a journalist is obliged to divulge the name of a confidential source. This case involves what has become known in Canada as the Sponsorship Scandal, which came to the public's attention largely due to the work of an intrepid Globe and Mail investigative reporter by the name of Daniel Leblanc, whose information and reports were fuelled by a confidential source known only as Ma Chouette. If you are interested, a report of these Supreme Court proceedings appeared in The Globe and Mail newspaper and can be accessed at http://www.theglobeandmail.com/news/politics/supreme-court-weighs-fate-of-whistleblowers/article1332253/.

Appearing before the Supreme Court of Canada is a high point for any lawyer, and while it was not my first appearance, I was keenly aware of how lucky I was to be there, alive and healthy and participating. As I stepped to the lectern, before the entire Bench in a case of great national importance, I felt joy to be there and gratitude to have been spared. How many people go through their entire lives without ever recognizing how lucky they are just to be alive? Yet, survival can’t simply be about going on or returning to ones old life. There are lessons and new perspectives to be gained, joys that have to be savored and appreciation that has to be conveyed. When we are going through the trials of illness, it's not always easy to see the light at the end of the tunnel. It's not always easy to contemplate a life after illness, but life can prevail, and it's a life that can be more far meaningful than a life without illness.

There is a wonderful book called Tuesdays with Morrie by Mitch Albom, which recounts the story of Morrie Schwartz, a retired professor of sociology at Brandeis University, who was diagnosed with ALS and ultimately died from it. The Tuesdays referred to in the title of the book are the Tuesday afternoons which the author, a former student of Morrie’s, spent with Morrie during the last year of his life. It's a tale of how to face death with courage and how to live even when one is dying. One line which I remember and which will always stay with me is Morrie saying that "if you can learn how to die, it teaches you how to live".

Some of you (assuming there are actually people reading this) might be wondering what the kayak is doing in the picture at the beginning of this entry. The answer is that I took the photo on a wilderness trip in September to Pukaskwa National Park on the shores of Lake Superior, a wonderful pristine paradise where we kayaked and camped, fished and ate and laughed for a week, the latest of my annual wilderness trips with friends. The beauty of this trip was that it was my first kayak trip since I fell ill, and for that reason it was all the more memorable. My kayak on the beach symbolizes for me my return to calm and serenity, where beauty is everywhere.

So much for philosophizing today, as I mentioned in an earlier entry, I've already sent out letters to people I hope will ride with me and I am looking forward to responses. I will keep you up to date on how it's going as I continue on my celebration of life.

Happy to be 55

Tomorrow is my birthday - #55. My brother Gordon, my transplant donor (and a doctor), called to say happy birthday, and he added, "55 - you're getting old". I replied "thank God". That's what leukemia does to you, and it's a good thing.

This week I'm sending letters to friends and colleagues who I hope will ride with me, even for a day or a week. I am getting going. The project is beginning for real.

My plan

Now it's time to talk a little about my plan, and the reasons behind it.

In order to celebrate my recovery, five year milestone, and most of all the time and joy it has given me with my family (my wife Maryse and my children Julianne and Phil), friends and colleagues, I plan to cycle, in April and May of next year, from the Atlantic coast of France (starting in a village called St-Nazaire) to Budapest, Hungary, the birthplace of my maternal grandparents. I will follow a cycle route called Velo-6, which is one of twelve bicycle routes implemented at the initiative of the European Federation of Cyclists. This route follows three of the great rivers of Europe, and cradles of European civilization, the Loire, the Rhine and the Danube. It crosses France, Switzerland, Germany, Austria, Slovakia and Hungary. While it continues beyond Hungary, all the way to the Black Sea, I will be satisfied, at least on this trip, to reach my family's native city of Budapest. To find out more about Velo-6, and see the route I will follow go to http://www.eurovelo6.org/bicycle-ride, and look at les etapes (the stages) from Val de Loire (the Loire Valley) to Vienne (Vienna) to Budapest.

I'm going to use this occasion to continue to build support for the hospital where I was treated, Maisonneuve-Rosemont Hospital in Montreal, Quebec, and in particular for a fund which I helped to establish, The Fund for Research and Education on Blood Cancers. This fund raises money for fellowships in the treatment of blood cancers and for the Center of excellence in cellular therapies at Maisonneuve-Rosemont Hospital, which we hope will lead to new treatments and cures (I will write more on this below).

I will write in this blog about my illness, my treatment and my recovery. I will keep readers (if there are any) up to date on my preparations, and once I hit the road, I hope to post regularly, with lots of pictures.

My illness and recovery have taught me many things, most importantly the fragility of life, the great gift and joy of our every day experiences, how lucky we all are just to see our children grow every day, and, above all, the importance of making every day count for the better, both for ourselves and those around us. We owe that not only to all of those who made our recovery possible, but also to all those for whom recovery was not possible.

In the beginning ..

"You make a living by what you get, and a life by what you give" - Winston Churchill

Five years ago, I could not have imagined I would be writing this today. I had just been diagnosed with acute leukemia, I was starting my first round of chemotherapy and I was sure I was going to die. I had been diagnosed on September 21, 2004, almost seven years to the day of my father's diagnosis, also with leukemia, on September 29, 1997. My father died in just six weeks, and it seemed my fate wouldn't be very different.

The fact that I am writing this today is a miracle. It is a testament to science, to faith, to the skill and care of doctors and nurses, and to my being lucky enough to have a brother who was a match for a bone marrow transplant. After many months of initial chemotherapy, supportive care and innumerable tests, I entered Maisonneuve-Rosemont Hospital in Montreal, Quebec in early February 2005 for yet more, even more difficult, chemotherapy, and finally on February 17, 2005, my Day Zero, the day of my transplant, the first day of the rest of my life, my big chance.

When my doctors told me it would take me two years to recover, I laughed, I was 49 years old, had been in top physical shape, a type-A personality, and certainly not one to wait two years for recovery. I thought it would be a couple of months, and then I would be as good as new, back to my old life. That is not of course the way it worked, no matter how strong I thought I was, it was a long road back, a day at a time, a small victory at a time. First I was able to leave the hospital, then I was able to walk around the block, then I biked around the block, then I was able to run very slowly, I went back to work part-time, at the beginning every day was a struggle. In the end, hope, effort, faith and sweat prevailed and I am now, five years after, stronger than ever, physically and spiritually.

I realize that I am very much the exception. Almost everyone I know who was sick when I was is neither no longer with us or substantially weakened. When I read other blogs (more about this later), I find many stories that did not end as hoped.

I hope my story will be of help to others.

I also hope you will join me in my plans (more about this later) and celebration of life.