What was/is your diagnosis?
Acute Lymphoblastic Leukemia
What schools did you attend?
University of Manitoba/University of Winnipeg
What are your career goals?
At this point, I don’t really have career goals in the traditional sense. At one point I worried about finding a path to an influential and, preferably, high-paying job. Now I’m glad I don’t have the pressure, responsibility and time commitment such a job would entail, that I have more time to spend time with my family and explore new ideas.
I have lots of ideas, and a strong desire to do what I can to make my community and the world a better place. So I guess my ultimate goal is to find a way to do this and still feed my family.
What is your occupation?
I am a researcher for a nurses’ union
Your cancer experience:
How did you find out you were sick? What led to your diagnosis?
When I was initially diagnosed—or began the path to diagnosis—the only symptom I recall is that I had a small lump on the right side of my groin area which I initially assumed was a hernia. After having it checked out at the urgent care centre here in February 2001, I was referred to a surgeon who performed a number of needle biopsies, none of which returned anything. He eventually decided to do an open biopsy and on June 8, 2001, I was told I had Non-Hodgkin’s Lymphoma.
I began running very high fevers when I was waiting to see an oncologist and went to the local ER. From here I began my journey through the healthcare system, being transferred initially to St. Boniface Hospital, where they did a bone marrow biopsy. Upon getting the results from that I was transferred to the Health Sciences Centre (HSC) where I was told that, in fact, I had Leukemia (ALL).
Leading up to my relapse in 2009 I had been experiencing a strange sense of pressure in my head that wasn’t initially what I would call a headache. It did result in me occasionally losing my vision very briefly. Again a tour of the healthcare system resulted. I initially saw my family doc who concluded it must be stress. While I was secretly happy with that, I knew there was more to it, so I went to urgent care again where I was examined, scheduled for an MRI, and referred to a neurologist.
After seeing the neurologist and finding that the MRI was clear, I was referred to an ophthalmologist. After he examined my retinas, he concluded that there was a fair bit of pressure in my head and referred me to another ophthalmologist, ostensibly a retina specialist. I honestly don’t remember if he found anything interesting (I do remember him being very dull) but he was supposed to send information back to the neurologist (which I expect he forgot to do).
I began having severe headaches soon afterward, and by this time I was sleeping sitting up in bed and regularly throwing up. I tried contacting the neurologist but—as many may know—one can’t actually speak to a doctor without making an appointment. His earliest opening was in two weeks. I was advised, that if it was urgent, I should attend the ER. Not wanting to sit in the ER for six hours with a ripping headache, I reached out one more time to my doctor.
This time, after examining me with some newfangled eye examining thingy, he was quite concerned. He sent me home with the assurances that he would contact my neurologist right away and arrange something. Later that day I got a call from the neurologist informing me that I should go to the ER at the HSC and the “neurology team” would be waiting for me. We hustled down to the ER and within ten minutes I was on my way into an examining room, surrounded by neurologists and a crew of neurology residents. I had a lumbar puncture which confirmed that I had leukemic cells in my spinal fluid. That evening I was admitted for treatment.
What year was it? What was your age at the time?
My initial diagnosis was in 2001 when I was 28. I relapsed in January 2009 when I was 35.
In which hospital were you treated?
Health Sciences Centre in Winnipeg.
At what level of education were you at diagnosis?
The year before I had just completed a Masters degree in Public Administration.
What were your first thoughts when diagnosed?
When I was first told I had lymphoma, it was strange. I was concerned, but my first reaction was to seek out more information. I called the Canadian Cancer Society to find out about this lymphoma thing. When I was told that I actually had leukemia, by then I was at HSC snuggled on the isolation ward. Somehow hearing the word “leukemia,” my mind immediately went to, “Wow! I might die.” It was devastating for about a day. Then, just like that, I switched to the practical, “Ok, I hear this is treatable. Let’s get to it.”
When I relapsed it was entirely different. At that point my wife was five-months pregnant with our second child. We had been through this once before so we knew what we were up against, and now it was compounded by the possibility that our child would be born in the middle of my treatment. I also had read enough about leukemia and treatment to know that relapse is not a good thing, and to know that I was going to be getting a stem cell transplant.
I had met people who had transplants when I was in the hospital the first time. I had watched people with ALL that I had become close to pass away. Despite the fact that I knew that not everyone suffered them, I had seen the side effects of transplants from an unrelated donor (I knew I didn’t have a perfect family match). I knew I would be in hospital for at least a month for sure (it turned out to be two and a half initially), and I thought about how I would see our son, who was two-and-a-half-years old at the time.
The second diagnosis, compared to the first, was overwhelming.
How did your family react?
Everyone was obviously initially shocked, and I think there was a brief period of sadness as people thought about the potential for me not to survive. After that everyone was very supportive and rallied around me, even my girlfriend’s family (we were married in August 2001 during the break between my induction and first consolidation treatments).
While everyone was supportive, the interactions between family—particularly my wife and my mother—were among the most stressful parts, especially during my first treatment. I can understand it, and can’t blame them. After all, being the family and supporter of a cancer patient is, in many ways, harder than being the patient. Despite everyone’s best efforts, it was very difficult, and I often found myself stuck in the middle.
Overall, I am very glad I had the support over the last 11 years, particularly from my wife. Her 12 years with me have almost been entirely defined by cancer, and she is someone whose support I probably never appreciated enough.
How did your friends react? Were you treated differently, or did things remain the same?
My friends were very supportive. They treated me differently in the sense that they treated me as if I was fragile, even when I assured them I was not. I went to visit some of my old friends in my Mississauga just over a month after my last consolidation treatment. As usual, we rented a rink and played some hockey at midnight. The whole time, despite my reassurances to the contrary, they were constantly concerned about my wellbeing and checking in to make sure I wasn’t dying. It was very sweet, but different.
What did your treatment consist of?
My initial treatment consisted of three rounds of inpatient chemo (although, somewhat experimentally, I ended up doing the last round as an outpatient). My treatment was fairly standard (for the time, at least). The induction consisted of cyclophosphamide, vincristine, doxorubicine, prednisone, and l-asparigiaise (if I recall correctly). This protocol got me into remission successfully and was administered as in inpatient on a tidy, isolated ward. The chemo lasted a couple weeks, and then I had another couple of weeks to recover and get some basic immunity back.
My first consolidation consisted of methotrexate paired with something I have forgotten. This occurred over a month, which included 9/11 (yes, that’s where I was on 9/11). My final consolidation consisted of etoposide and something else I don’t recall, and my last doses were administered on New Year’s Eve 2001 (yes, that’s where I was on New Year’s Eve. I was watching Scrubs, actually).
Following this I had three years of “maintenance” treatments, which included occasional does of vincristine, 6-mercaptapurine(?), quarterly lumbar punctures, and five days of prednisone each month.
For my second treatment in 2009, I got what is known as Hyper CVAD, which is normally administered as cycles of cyclophosphamide, vincristine, adriamycin and dexamethason alternating with cycles of methtrexate and…maybe nothing else. This is done for three cycles (three times of each group). In my case they switched them around and gave me the methotrexate round first, since my cancer was primarily in my CSF, and MTX is able to cross the blood-brain barrier (or something to that effect). In the initial stages I was also getting lumbar punctures every second day to measure my intracranial pressure and administer methotrexate intrathecally (into my spinal fluid).
After receiving these alternating cycles for ten weeks in the hospital, I was released to recover for a stem cell transplant. In preparation for the transplant I received intra-cranial as well as total body radiation and an absurd amount of cyclophosphamide.
Non-medical and side effects:
During my first round in 2001 I had a reaction to the l-aspariginaise which cased acute pancreatitis: vomiting, intense pain. I wasn’t able to eat sugar or fat of any substance for probably two weeks while I recovered. Try gaining weight after treatment that way!
During my second round I had what I think is now understood to be a reaction to methotrexate, but at the time was initially interpreted as a potential fungal infection. This showed up on a CT scan as lesions of some sort on my lung. I had a bronchoscopy (perhaps my least favourite procedure in the world) and when that didn’t resolve anything, and open lung biopsy. Meanwhile, some other scan identified similar lesions on my liver, which ended up in two separate open liver biopsies. In the end it turned out not to be a fungal infection after all, but I got some nice scars to show off at the beach.
And, as often happens it seems, the consolidation round I did as an outpatient was uneventful.
My second treatment, in 2009, was not nearly as complicated, and the major side effect I had was terrible mouth sores from the chemo (which I had in 2001 as well). During the month post-transplant, I was on enough morphine to control my pain and allow me to eat that I actually fell asleep eating a few times. Luckily I had my wife to poke me and wake me up before I spilled too much food on myself. In this month I did also have an extended period of suffering from diarrhea, most likely as a result of later effects of the total body radiation.
During my time of recovery I fought graft VS host of my mouth (again with the mouth) and was using a steroid rinse and—at one point—also a steroid ointment-type stuff I would apply inside my mouth. As steroids are wont to do, I gained a lot of weight, which I lost again once I was able to stop the steroids. I also had an episode of difficulty breathing, which may or my not have been caused by GVHD as well, so I get the occasional pulmonary function test to keep tabs (I’m doing quite well now, thank you).
What is your current medical status?
I am done treatment and will be three years post-transplant in May 2012. The only ongoing issue I have is damaged testosterone production (not uncommon either, as I understand) which I supplement and which doesn’t have much of an effect on me at this point.
How is life different for you now post diagnosis (physically, emotionally, socially, and spiritually)?
The most substantial difference for me since my last illness is that I now have reduced vision, mostly in terms of restricted peripheral vision below and to the sides, but also a decreased ability to discern detail in low light and low contrast environments. I have a restricted drivers’ license and could drive, but I don’t as I am not very comfortable doing it, and am deathly afraid of missing something and running over someone.
This also affects bike riding and I have been reluctant to do that for the opposite reason: not wanting to be run over. Cycling was among my favourite things to do prior to my illness. In fact, in June 2002, six months after my last consolidation, I rode from Winnipeg to Chicago with the Cycle of Hope for Habitat for Humanity. It was about 1,000 kilometers of riding for me (I took a couple of days off) including one 100+ mile day.
My life is profoundly different emotionally, socially, and spiritually since I have recovered from my last illness. Now I have two amazing sons, both born after my first treatment, and the second born a month before my transplant. I am now separated from my wife, although we are still close and work hard to maintain a sense of family for the boys.
Socially, I am quite isolated now, and am starting to realize just how much my social life, such as it was, was centred around my relationship with my wife. Most of my good friends still live in Mississauga, and the friends I have made here have either moved on to their own lives and careers, or are holed up in remote northern outposts.
At the same time, I don’t often feel desperately lacking in my social circles. I would appreciate being closer to some good friends and being able to sit down over a coffee on a whim.
As far as other social activities, I find that with my reduced vision I detest being in crowds, and feel very out of place. Navigating in stores, while never something I did for fun, is more challenging and stressful now. I find I appreciate calm and solitude (to some extent) more now.
On the spiritual/emotional side, I find that I am much more empathetic. I am deeply affected by the pain and suffering in the world. While I have always been interested in politics and public policy, I find now I am much more drawn to issues of people, that I want to solve real problems that impact real people, and not just deal in things and abstractions.
I am not religious. While I did seek answers during my treatments—most notably during my first illness—I found that my rational mind was never able to be satisfied with what religion had to offer. At the same time, I don’t feel like I need religion; I am quite comfortable with my moral and ethical sense developed through years of observation and contemplation, and by having good people around me. I do consider life and its purpose and mine, guided more by philosophy than faith.
In general—more than ever before—I am guided by a holistic, ecological understanding of our world. In short, what good is my success, without others to share it? Indeed, while I am important, what am I without my family? My community? The world?
More than anything else, what has changed is the degree to which I struggle to make sense of what goes on in our world, and why anyone thinks it makes any sense.
What was the toughest part of your challenge?
It’s hard to say there was one toughest part, except to say that the emotional aspect of this experience have been much more difficult and challenging than any of the physical discomfort I may have felt.
Early on, beyond navigating family tensions and conflict, my struggle was with understanding my place in the world as a survivor. I had met a number of people during my first treatments: two were women about my age, one had a very young child. Both passed away in the summer of 2002 within a week of each other. To some extent, while most were asking, “why me? Why did I get sick?” in the back of my head I was asking, “Why me? Why am I still here?”
I struggled with my identity as a husband and father after my second diagnosis. For almost four months, my two-year-old son knew his dad almost exclusively through the frame of a Skype window. My youngest son has never known a dad who hasn’t struggled physically, tripping on him because I couldn’t see him due to my vision. My wife has spent the last 11 years of her life in cancer’s shadow, where the first words out of anyone’s mouth were always, “How’s Stu doing?”
When I think about it, I can’t help but feel a kind of irrational guilt at having put her through everything we’ve been through, as though somehow I could have foreseen it, somehow I could have not gotten sick.
And now I struggle with my place and purpose in the world. It certainly isn’t to become rich and powerful. Of course, a significant portion of it is about my kids, but what example am I setting and will I set in the future? Does it matter? I do want to make a difference, to be useful, but it seems my definition of what is useful is what needs clarifying.
What was the best lesson you took away from your challenge?
I think the most important thing I leaned from my experience is not to treat cancer as something that you are going to beat or an easy victory. Of course that could happen, and of course we all hope it does. But the reality for so many people is that once they are diagnosed with cancer, like it or not, cancer is part of their lives. Whether it is a fear of relapse, questions from your friends about your health, or nagging side effects from treatments, it is virtually impossible to leave it behind and pretend it never happened.
While you are busy fighting, struggling to get through, to get to the end, your life is passing you by. You may spend five years in one form of treatment or another, or you may be done and “cured” in six months. But, while your waiting for that “cure” to come, suddenly you realize that what you thought would be six months is two years, and then five years…and all of it with your head down, focused on the fight.
Just embrace it.
I know this sounds crazy: Why the hell would you embrace illness?
Once you’re diagnosed, cancer is going to happen whether you like it or not. As much as we think we can will it away, we can’t. But, you’re going to meet a lot of cool people: Some incredible nurses, some quirky doctors, and some inspirational fellow travelers on the cancer journey.
And you know what else? You’re going to learn a lot about yourself, about what is important to you, and about how you REALLY want to live your life.
I have always been conflicted about people like Lance Armstrong who say things like, “Cancer is the best thing that ever happened to me.” I think it is self-evident that not getting cancer is a much better course. Instead, I think the point is to realize you have cancer, why don’t you accept that and realize that some good can come from it?
I think Stoic philosophy provides a great guide for cancer survivorship. It advises you to want what you already have, to focus on things that you can control, and to not lose sleep over what you can’t control. Also, while appreciating your current situation, realize that what you have could be taken away, and to be prepared for that. Basically, don’t let that which is external to you affect your tranquility; you are in control of your own frame of mind.
Of course, I am not pretending that I am perfect at any of this, or that it didn’t take me the better part of a decade to figure it out. You may disagree. All I can do is offer my perspective.
What really motivated you to keep going while you were sick?
What kept me going early in my illness was the simple knowledge that treatments could be effective and that I might be well again. I didn’t suffer any significant setbacks, so it was relatively easy to maintain this perspective.
During my second illness, I felt much the same way, but tempered by much more anxiety over the direction of my treatment and potential side effects. More than that, though, I was motivated by sitting on my hospital bed doing a puzzle with my two-and-a-half-year old son and having him put his arm around me and say, “No daddy, this is where it goes.” It was also standing beside my newborn son as he held my finger one month before my transplant. One really doesn’t need much more motivation than that.
What are your thoughts and feelings about your illness now? How have they changed since before your diagnosis?
I don’t think much about my illness as a separate entity, or as something that can be analyzed and described independently of me. While I am not cancer, cancer is a part of me. Relapsing after being in remission for seven years is hard to ignore. This doesn’t bother me, however; it isn’t a problem. I don’t think cancer is the best thing that ever happened to me, but I do appreciate what I have learned on my journey.
I also don’t think of cancer as something with which I am at war. To me, cancer is a sign. While I identify with Wayne Tefs when he says cancer is a sign that you need to live your life differently (Rollercoaster: A Cancer Journey), I also believe that cancer is a sign that we need to live in the world differently.
While I expect there are a certain number of cancers that would always happen due to normal biological mutations and the effects of aging, it is hard to argue that a significant portion of cancers are not attributable to the toxic environment in which we live and the toxic products that surround us and we use everyday. While I don’t know for sure, I suspect given all the evidence around the social determinants of health and even the impact of inequality, a significant proportion of cancers can be attributable to the massive disparities in material wealth and political and social power around the globe.
While doctors are spending their time trying to save cancer patients and discover new treatments and cures we, as people of the earth, need to stop and think about what we can do to stem the tide of new cancers. Perhaps it’s time for a new way?
What are some measures people can take to lower their risk of having an experience like yours?
Beyond avoiding being present for the detonation of a nuclear bomb, I expect that the best a person can do is live a reasonably healthy life while, not losing sleep over whether they are living a healthy enough life at the same time.
As I suggested, the best thing I think we can all do is think about how to do things differently, to work towards a society that doesn’t contribute to the development of cancer.
Did you attend any support groups during your challenge?
I have only very recently begun attending a support group, and I think it will be helpful, particularly to be able to talk with people who have similar types of experiences, or at least a familiar frame of reference.
If you did not attend a support group, why?
I didn’t attend a group earlier because there wasn’t really any support for young adult cancer survivors. And, as time passed, I didn’t really pay attention to whether any new ones had arrived. I guess I had settled into my own coping mechanisms.
How are you connected with Young Adult Cancer Canada?
It was discussed at the young adult support group I began attending recently.