Finding a new way...

The experience of having cancer is difficult to explain, not least because it, like so many other things, is unique to each person. While many people have significant struggles with physical symptoms and the physical toll of treatment, for others the biggest struggles are emotional and personal.

For me, despite having dealt with much in the ways of physical challenges (although nowhere near that faced by some), by far my biggest challenges have been emotional and in finding my spiritual/philosophical way after cancer. The major events in my cancer experiences came at key points in my life, points in time when major life decisions are made, and the direction of one’s life is often initially set. That is not to suggest that anyone’s life is ever actually “set," but my recent struggles have significantly been about the question of choosing a direction forward. My life looks at lot different now, from my physical circumstances to my perspectives on life and the world. What does that mean? And what should I do about it?

In the more than eleven years from my initial diagnosis to today, I have travelled through many of the significant stages of adulthood: I got married, worked in three very different roles, had two children, bought two houses, separated from my wife and now find myself with shared custody of two young boys, and trying to do the best job in raising them in the time they spend with me. During this time I also struggled with emotional and physical effects of medication, the most significant of which were the emotional ups and downs associated with taking prednisone five days per month for three years as part of my maintenance treatment after my first illness. Finally, there are the lasting physical effects, most notably my permanent partial vision loss, and the lasting effects of treatment that require me to take testosterone supplements, likely for the rest of my life. These effects have had a significant impact on my already fragile self-confidence and my definition of who I am as a person.

With surviving cancer, there is also the ever present possibility of relapse or the less specific threat of “secondary malignancies." In most cases, the longer you experience disease-free remission, the more likely you are to be disease-free in the long term. Many people use the five year mark as a kind of threshold: Once you are disease-free for five years they may not call you “cured," but they treat you differently, and often boot you out of the “cancer system" back to your family doctor.

I remember when I was getting close to the 5 year mark having conversations with doctors and nurses about the term “cured." I was very anxious, at that point, to cross the threshold whereby I would leave my cancer behind, shed it like a used skin I would never again need to wear. Of course I never heard the word “cured" (and neither do, I expect, most cancer survivors), but I was “set free" with the expectation that I would move forward and lead a healthy, happy life.

I certainly had no expectation that I would get cancer again, let alone relapse with the same cancer. But, there I was, almost 7 1/2 years after first achieving remission, sitting in the Health Sciences Centre Emergency Department beside my wife, 5 month pregnant with our second child, listening to a neurologist tell me they had found leukemic cells in my spinal fluid, and that I was being admitted that evening.

So now I find myself searching for a new way to live. I have written previously about the challenges presented by my vision loss, and I am still learning new ways to cope with that. I am in a constant struggle to move forward from my marriage, both in terms of figuring out how to be separated and share custody of two children, and also with how to move forward in a new relationship. I have to report that I have been tragically unsuccessful on both fronts throughout this past year.

I am at a crossroads in my life, and my survival as a sane and happy human being depends on figuring out what is important to me, where to direct what energy I have, and how to make the most of each and every day, limited as they may be. This kind of broad thinking about life, on finding direction and motivation in life, has never been something at which I have excelled. In reality, I have mostly been carried forward by life, ending up wherever life, and the direction of others, has taken me.

By no means do I think my kind of questioning, this sense of life and purpose upheaval, are unique. Certainly there are those who, by and large, return to their life prior to their illness, perfectly content to be back on track. On the other hand, I get the sense that, on some level, most cancer survivors (and those surviving other major illnesses) struggle with a world that looks different to them after their experiences, and even a sense of urgency around finding their priorities, given the uncertainty most survivors face. This can be a very difficult position to be in, living in a world so driven by progress, movement forward at all costs, and so incompatible with the idea of self-examination or thoughtful reflection.

I just hope that, if you are reading this, it provides you an appreciation of how overwhelming it can be to find your way after cancer. For those of you who know young adult cancer survivors, those struck by cancer in the most critical years of responsibility and way-finding, know that this journey is, without a doubt, the most difficult for them. Children with cancer have the support of immediate and extended family on a daily basis and, for all intents and purposes, have no responsibilities. Older adults with cancer have most often long ago established the direction for their life and, in many case, have already reached retirement and shed the stresses of work and income, not to mention those of child rearing. The young adult cancer survivor most likely supports themselves through work, possibly has assets like a car and house that must be maintained. Often they have children to care for or are contemplating having children soon, a possibility which is generally imperilled by cancer treatment.

Suddenly everything they thought they knew needs to be redefined. Can I afford to stay in my house? Will I be able to return to my job? Do I want to? Will I be able to care for my children? Will I live to see my children grow up? Get married? Will I live to see my child’s next birthday?

Young adult survivors face the greatest emotional and mental challenges but, in many ways, receive the least support and the least sympathy. Nobody likes to see a young child suffer, and to see an older person weakened by rounds and chemo and radiation is heartbreaking. Young adults, however, suffer all these things as well, but they must continue on, figuring out how to make ends meet, how to get the kids to daycare (or how to get the kids into daycare in the first place), how to feed themselves, let alone their families.

I am a young adult cancer survivor. This is my struggle. I don’t like to talk about it, because it is hard to label myself as struggling, as needing help. But while I do struggle, and I do need help, I don’t write this as a plea for me. I write it because I see so many other young adults, with cancer and facing other challenges, and I want people to look around at these young adults in their lives and appreciate the yeoman’s work they do every day just to get by.

I don’t have the answers for me, even about what I want my life to look like, and in many ways am only now truly beginning this process of redefinition in earnest. I know there are others who feel the same way. I hope that together we can find ways to make this process easier for others in the future.

Just because life is hard now, it doesn’t mean it should have to be that way...