19th February, 2019

This week last year was one of the worst weeks of my life.  After a shadow showed up on the low-resolution ct-scan Nick received while doing radiation, it was discovered that his cancer had infiltrated his lungs with a vengeance. On February 14, just as he was about to celebrate Valentine’s Day with Alex, we had to break the news that yet again he would need more chemo.  We didn’t tell him that this time the chemo would be of the palliative variety.  That news was saved for an appointment approximately 6 days later when he was told by a doctor who wasn’t his own oncologist, that his cancer had reached the incurable stage.  During this appointment, being the coward that I am, I was doing what I normally do when Nick had to go to  the London Regional Cancer Clinic, I was on the treadmill at Goodlife, where I ran and ran to cope with my overwhelming fear and anxiety about what the results of the visit at our friendly neighbourhood cancer centre would be this time.  When I finally got in touch with Matthew, he refused to say anything over the phone, but that I should just come home.  Whenever this happens, I know that the news is not good and, this time, it was the worst.  Nick was told that the chemo would be palliative and it might give him an extra two years of life, but that was it.  I lost my mind.  I frantically and desperately called testicular cancer experts at major centres throughout the States.  They all reached the same conclusion.  I couldn’t accept this.  I emailed his regular oncologist and explained the situation to her.  She had been on holidays for three weeks and was taken aback by this new set of circumstances.  Only a week and a half before, Nick was snowboarding.  A week later, he was quietly asking to be put on an oxygen tank because he could barely breathe.  I begged her to do regular hardcore chemo, to just try it and see what would happen.  My boy wasn’t going to go down without a fight.  She didn’t offer any promises, but she agreed to try.  Chemo would start that Monday, February 26, my 50th birthday, the second worst birthday of my life.  That birthday began with Matthew, Alex and I desperately putting on a positive face while Nick quietly wept on the couch.  We told him that he could do it, that we could get through this again and he could go on to school, get married, have kids, get a job, have a house, all aspirations that seemed so normal for everyone else, but for Nick seemed so elusive and, if they could happen, would be like winning the lottery.  When Nick got to the hospital, Dr. Potvin sat with him on the bed, hugged him and soothed him like a mother would her child. I truly believed that she loved Nick.  That night, while Alex watched in terror, Nick started hardcore chemo for the fifth time, going to anaphylactic shock from a new drug that was added to his regimen.  That was my 50th birthday, the second worst birthday of my life.  My birthday this year is the worst of all . . . my first b-day in 23 years when Nick won’t be around, not just because he’s travelling or going to school or working out of the city like most 23 year olds, but because he is dead and he will never come back.

Here is a pic of Nick about to go snowboarding. 

Here is a pic of him two weeks later on oxygen fighting for his life.   

I (Tanja) have been reflecting a lot these days. Of course, reflecting is all that I do since Nick died.  My life will never be the same and I am a very different person now.  In fact, most days, I just wish that life would end for me.  I bemoan my good health and the average life expectancy of females which theoretically means that I have at least another 35 years of having to live a life on Earth without Nick and with the very painful memories of how joyful our family once was and never can be again. Everything I do, I will now do either to ensure that Vincent will be O.K., or it will be to honour Nick’s memory and keep it alive.  There is no longer a hope for a relaxing and satisfying retirement where I can look back on all our hard work as parents, joyfully reveling in the independent lives of our children and grandchildren, congratulating ourselves on a job well done.  This is no longer our path.  Our lives will never be about ourselves again or about reaping the rewards of hard work and intense parenting; it will be about living up to the exemplary model for living and dying that Nick set for us and which we now must tell the world about.

This is an artistic rendering of a family which has lost their child.  I see it all the time when I visit the Bereaved Parents’ Society in London.  Even if the child is physically gone, their shadow, their presence is always there in the background.

  Nick was diagnosed at the age of 17, a very vulnerable period for a young person at the best of times, but in addition to worrying about all the conventional things that a young adult frets about, Nick also had cancer to battle. Both of my sons have always been fiercely independent and principled; Nick especially had no interest in sacrificing any of his self-reliance to his parents, but in light of his disease and the horrific toxicity of his treatment, he had no choice.  I had to mother him at a time when no boy wants to be mothered and, not only did I have to mother him emotionally, I was partially responsible for keeping his physical body alive for six years; again, not something most 45 year old mothers or their seventeen year olds have to worry about.  Even though this experience made us even closer than we already were, it was also incredibly frustrating for Nick.  I got an additional 6 years of excruciatingly difficult parenting, the type of parenting that most people who have children in the 17 to 23 year old age range never have to contend with.  Now that Nick is gone, I feel an additional responsibility. Actually, responsibility is not the right word.  I feel an absolute need/desire/sense of urgency to mother Nick and keep him alive, not physically, but in our memories since he can’t do any of this for himself anymore.  Usually parents, some with sadness, relief, whatever the case may be, can let go of their children at this age as they embark on their own individual lives, something Nick wanted to do more than anything, but he can’t now.  I feel the need and desire to take on the role of his spiritual mother, entrusted with his legacy on this Earth.  Nick’s loss has put me on a trajectory that I never wanted, but I now have no choice but to follow.

    I have been reading a lot about the afterlife, cancer, grief, dying etc.  There are two books that have really stood out: The Emperor of all Maladies by Siddhartha Mukherjee and When Breath Becomes Air by Paul Kalanthi.  The first book is a Pulitizer Prize winning and unbelievably compelling as well as informative history of cancer.  There is also a three part documentary on this book which, although obviously less detailed, is also incredibly engrossing.  In the documentary, the author, Siddhartha Mukherjee, poignantly observes something that really resonated with me:  a relationship with someone who has cancer is not only an extraordinary relationship, it is THE extraordinary relationship.  There is no connection with another human being that could ever be more profound than this. My relationship with Nick was extraordinary, but it was elevated to the profound by virtue of his illness.  I feel a connection with him even still that transcends his death and I truly feel has even greater depth and profundity because of his death.  I remember one of Nick’s friends posted a picture of Nick in his hospital bed, breathing with the help of oxygen, sitting with Alex who was smiling and holding his hand.  The hashtag on this photo was “this is what true love looks like”.  Nick’s cancer and Nick’s dignity while dealing with cancer elevated and intensified every relationship that he had with everyone enriching their lives in the process albeit in the most painful way imaginable.

     The second book that I mentioned is a memoir by a brilliant neurosurgeon who is forced to face his own mortality and re-evaluate his priorities when he is diagnosed with lung cancer, at the relatively tender age of 36 just as he is on the cusp of completing his medical residency.  I mention this book because it was one of if not the most powerful memoirs on someone coping with death and dying that I have ever read.  Although his demise, like Nick’s, is tragic, because of their youth and so much promise and potential that lay ahead, there is also something uplifting and inspiring about how he dies and sorts out the priorities of his life.  As heartbreaking and horrifying as Nick’s death was, the way he died and lived was also spiritually incredible.  One of Nick’s friends recently commented that he felt that Nick had achieved a state of grace, that there was something divine intervening in his death.

     Right now, Vinnie is on a trip to Cuba with Alex, a trip that Nick was supposed to take last year.  I know that both Vinnie and Alex are very aware of Nick’s absence and their need to honour him while there.  I believe they will be distributing more of his ashes and trying to emulate the joie de vivre that characterized Nick.  Right now, I personally feel no joy, just RAGE and despair as I try to make sense of all the trauma of the past 6 years.  

I’ve  attached the song Both Sides Now which is really speaking to me as I try to find meaning in my life. Both Sides Now - 2000