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Still Standing by Jamie Irvine

Jamie holding one of his TWO diplomas with honours

#BellLetsTalk #mentalhealthawareness

My cancer was discovered late. Doctors estimated that even with a bone marrow transplant my odds were still only 55% at best.

Three years of treatment (including two failed bone marrow transplants) resulted in a plethora of late effects: cataracts, preset osteoporosis, stunted growth, damage to my pancreas, changes in my skin pigmentation and a few others. That said, for me the worst part was not the effects on my body but the mental impact of it all. There was the feeling of isolation that came with being a kid in cancer treatment during my formative years; the fear of relapse and believing I was just on “borrowed time”; the self-deprecating thoughts that I didn’t earn my grades, my teachers just pitied me; and finally, the guilt of surviving when others did not.

Many of us childhood cancer survivors know at least one person who did not make it. I actually know a few but the one who stands out for me is Andy. Andy came to our school in grade 10 after just having finished treatment for leukemia. I thought we would bond over our shared cancer experience, but it turned out Andy wasn’t interested in talking about his illness. Still we became fast friends. In grade 12 when he relapsed, doctors gave him a low chance of survival. He decided to forgo treatment and within a few months, Andy passed away. I remember when I got the news one of the first things to pop into my head was, “I wish it was me.” To this day, the guilt of that being one of my first thoughts has etched itself into my brain and soul.

When high school ended, I decided to push the negative thoughts deep down. At that time, I decided to go to college for social work. I often tell people that I chose the field because I wanted to give something back for all the help I received. In reality that is only partially true. The other reason was that I wanted to make sure no other kid turned out like me.

After completing a Bachelor’s in Social Work from Carleton University, I was only able to get part-time work. I was seriously underemployed and despite my efforts, had difficulty launching a full-time career. All of those negative thoughts started to bubble to the top. The voice in the back of my mind told me I was broken and worthless and within a short period, I started to believe it. I secretly wished that I had died during my treatment or that I would develop a secondary cancer. I had hit rock bottom.

It was during a routine checkup at Princess Margaret Hospital that I met a nurse practitioner who sensed something was off and asked some questions. It was the first time in years that someone in the healthcare field seemed to care about my mental state (not just the physical) and it just all came bursting out. She recommended therapy and gave me the contact information for the survivor care program at POGO.

With a few months, my confidence started to grow. I was volunteering at POGO and I started to get interviews with government agencies and major non-profits. Even though I was not hired, I always received great feedback and was often told that I was within the top three final candidates.

Soon a position opened up at POGO and I was recommended for the job. To my surprise, I got it and now work as an Administrative Assistant for POGO’s Financial Assistance Program and Education Events. Even though I still have moments where negative thoughts creep into my mind, I feel as if this is where I belong and thanks to my supervisor and the other POGO staff, I continue to grow both on a personal and professional level.  

I now know that I am not worthless and broken. And although treatment has left me physically and mentally battered and bruised, I am still standing.

For more on survivor guilt read Leanne Brown’s story on page 23 of POGO’s 2016 Community Impact Report

I’ll be Home for Christmas by Jamie Irvine

Christmas in the hospital

Christmas in the hospital

When I was diagnosed with leukemia at age 11, doctors said that my odds were only 55% at best. After two failed bone marrow transplants, I had what was then an experimental treatment called a lymphocyte transfusion. This meant that in total I spent around three years of my life in and out of hospital, which of course means I spent a number of birthdays and various holidays confined to a hospital bed listening to the gentle hum of my IV pump and the occasional mention of a code blue over the hospital intercom.

This story takes place a few months after my 2nd bone marrow transplant. My family and I had just moved from Edmonton to Newmarket and I was transferred to SickKids hospital.

I’ll be home for Christmas
You can plan on me
Please have snow and mistletoe
And presents by the tree
-Bing Crosby

First off let me provide some context for those of you who might be unaware of what goes on during and after a bone marrow transplant (at least according to my experience). Before the transplant the goal is to make your blood counts a blank slate with the intent of getting rid of whatever may have triggered your cells to become cancerous in the first place. This of course means that your white blood cell count is now non-existent…which means your body now has no way of fighting even the simplest virus. With no immunity left to speak of, patients are placed in “isolation rooms”. Think the boy in a bubble…but with a room. Once the conditions are right, and with fingers crossed, the patient is then given their bone marrow transplant.

If things go well, the patients’ blood counts start to rise and eventually they are moved out of isolation and into a regular room. In my case, my mother was my bone marrow donor and one day I awoke to see she had posted a sign in my room that said “Every day, in every way, I get more and more like my mother.”

I was not impressed.

Weeks passed as they often do and I was moved out of the isolation ward and placed in a regular in-patient room. It was now getting close to Christmas and my family started to ask about the possibility of me going home for the holidays. Unfortunately, things didn’t look good. My counts were below the hospitals required minimum levels. December 25th crept ever closer and the results were still the same. December 21st, 22nd and even the 24th passed and though my counts had increased they still had not reached the desired levels.

On December 25th we asked (maybe begged would be the better word) the hospital staff if it would be possible for me to go home and the answer was still no. So my mother, father and twin brother spent the day in hospital with me, waiting and waiting. Eventually, at around 4 pm, my counts came back…just barely meeting the minimum requirements, but just enough for staff to let me go home. Nothing was prepared and it was too late to make the traditional Christmas dinner. So while my brother and I fished out the Christmas crackers, my mother quickly whipped some spaghetti. All in all, I have to say that it was the best and most memorable Christmas I’ve ever had.

(The previous year when I was “high” on morphine due to bone pain, I told an Edmonton Eskimo player dressed as Santa to get the heck out of my room…that Christmas is a close second.)

Was it a Christmas miracle? I can’t really say, but unlike Bing Crosby’s song it wasn’t only in my dreams.

About Hope by Dr. Michael Taccone

 

Dr Michael Taccone_Symposium 2015 emcee

Usually when I’m at a podium, I’m talking about neurosurgery or my cancer research. That’s what I’m used to and that’s what I’m most comfortable with. It’s never personal, it’s never uncomfortable, and it’s never unexpected. I’ve spent a great part of my life learning medicine, and all its beautiful complexities that can be explained and understood through science. I’ve learned to value the things in life which have explanations, can be proven, and follow a predictable pattern. I value them for two reasons. Firstly, I’m being trained as a neurosurgeon, and, as a neurosurgeon, I make a living on my ability to prognosticate and intervene, often with only limited information and even less time. Secondly, but more importantly, I value those things that are comfortable and predictable because I didn’t always have that luxury. I grew up in an environment which could not be explained, could not be rationalized, and was very uncomfortable—all because I grew up with childhood cancer.

I feel like I have told this story a million times, you know, the one where I shock my friends or colleagues with the story of how I grew up with cancer. In all my experiences of telling my story though, I have to say that my most memorable was when someone asked me, “Are you sure you had cancer?” I chuckled. Not because it was funny, but, because the question made me stop to think. I stopped to think because my life as a cancer patient, from when I was 8 until the age of 12, truly felt like a dream.

Why did it feel like a dream? Because we can’t explain dreams, they seem so far from reality that they can’t be real, much less controlled. They just happen. And, sometimes they are good and we hope they would last forever, while other times they are terrifying where you spend every passing minute hoping you will wake up. Ever since my oncology team came to tell my family and I that I had leukemia, we spent every day for the next three years with the hope that some time soon, we would all wake up.

Three years of chemotherapy and repeated hospitalizations is a long time for anyone, but, to an eight year old, it’s an eternity. I was always reminded that one day it would be over; that I would go back to school, that I would see my friends, and that I would get to be just like every other child my age who had the freedom to be a kid. But there were so many obstacles along the way. Some days, it felt like the new life that I had come to know as normal, would never end. Whether it was the frequent admissions for febrile neutropenia, the adverse reactions to life saving therapies, or the fear of waking up without my mother and father after each procedural sedation, all I could do was hope. Whether it was the news I received when, after 3 long years of fighting, my cancer had returned; for my family and I, from that point forward, all we had was hope. Whenever I felt powerless, beaten, or scared, there were no statistics, treatment algorithms or scientific breakthroughs that helped. It was hope and hope only that got me through.

Why did we hope? We hoped because hope was all we had. Hope was all I had. And more than any medicine or procedure, it was the single most important thing we needed and we needed it on a daily basis.

As a patient and a doctor, I have personally experienced the limitations of science and witnessed the unlimited possibilities that hope brings. When I saw my patient’s family strengthen and come together after the diagnosis of a devastating brain tumour, I don’t think it was just because of the our medical care or the success of surgery, it was hope that did that. When I watched my patient with a debilitating traumatic brain injury take his first steps after a month of recovery on a ventilator, I don’t think it was just because of the physiotherapy or supportive care we provided, it was hope that did that too. And when I witnessed my patient who, after falling into a deep coma from a ruptured brain aneurysm, eventually awoke, recognized and then kissed his wife, I don’t think it was just because we secured the bleeding vessel, it was hope that made that possible. When the odds are stacked against us, when we are faced with the impossible, and when the world is telling us to give up, that’s when hope is there and that’s when it’s most important.

All physicians, nurses, and allied health care workers should consider the role of hope as a critical aspect in the multidisciplinary care of children with this devastating disease. We can all be witnesses and instruments of hope for children with cancer, all we have to do is recognize it. Then, and only then, will we see that where hope lives anything is possible.

You can follow Dr. Taccone on Twitter @michaeltaccone