Marilyn Herasymowych

From a linear perspective, there is only one truth.  We can know it, and thus we act as if it is true.  If something tells us that our truth is not true, we easily deflect this by saying that whatever is happening is the problem, not our truth.  We easily believe that the stories we tell about the patterns we live are accurate reflections of reality.  We believe we know what we need to know about the system, so we operate as if we know enough.  We believe that the rules are fixed, and that there is only one way to work within the system, and we must follow that one way.

I knew I had strong linear thinking tendencies, but never realized just how strong they were.  My experience with cancer taught me just how deeply linear thinking was ingrained in my ways of operating.  I was shell-shocked and deeply wounded by five months of chemo; now I was in “recovery”, a hopeful place, a place of return.  I was convinced that I would now regain my ability to think clearly once again, to walk and run and ride my bike, to visit with friends and family, and to go out for evening events like the ballet.  I would be myself again.  That’s what recovery meant to me.  All I needed to do was to figure out when recovery officially started.  Then I would be on my way back to health and to work.  My last chemo was on July 14, 2009.  Add three weeks for the chemo to do its thing.  Recovery would start on August 4, 2009.  Instead of feeling sicker and sicker, I would now be feeling better and better.  That’s what my oncologist told me would happen, so that’s what I expected.

You can hear the linear thinking in my plans to return to normal.  There is a normal life that I have, and I will return to it.  I even had a time frame as to when this return to normal would start – August 4, 2009.  I recall talking with my oncologist and saying I’ll be back at work by October 2009.  This was my truth, and to me this was the only truth.  But, like everything else in my cancer experience, my recovery would prove to be the exception to the rule.

From a non-linear perspective, truth is an emergent and dynamic property of a system.  We cannot know truth, because stories and narratives on which truth rests are socially constructed.  The stories we tell about the patterns we live create relational expectations, possibilities, and constraints.  We appreciate that we can only understand the partial system, and that stories told cannot be accurate representations of patterns lived.  We know little about the system, so we operate as if we do not know everything.  We believe that the rules are emergent.  The system is dynamic, so we can learn as the system changes.  Our learning changes the system, thus creating new rules.

What I had failed to understand was that in my body, in my mind, and in my spirit, something had irrecoverably changed.  It would take me more than two years to realize this.  I would hold on to my belief that I would get better until the day my belief would be shattered and swept away.  I didn’t read the signs very well.  How could I?  I had never been here before.  On the day my recovery started, I actually felt worse, not better.  It was almost as if I had had a chemo treatment.  What was happening to me was much more complex than I understood at the time.  After each chemo, I would complain bitterly about how badly I felt.  It felt as if the chemo was still acting on me well after the infusions.  But, I was told that the chemo was flushed out of my system in two days, so I was simply feeling the effects from the damage left in the wake of the drugs.

Even though my treatment was over, and the drugs supposedly cleared from my system, the damage from the drugs was still expressing itself.  Nobody would tell me why I was feeling worse and not better.  After all, most people went back to work within a month of ending this form of chemo.

Being a person who needs a reason for everything, I went in search of an explanation.  When I couldn’t find any, I made up my own.  What I think happened to me was something I call the cumulative effect.  The oncologists do talk about the cumulative effect during chemo, in terms of producing cumulative side effects.  In other words, the side effects get worse with each treatment.  Oncologists are quick to point out that the side effects start diminishing once treatment is over.  But, what if the treatment did more damage to my body because it is so sensitive?  What if my body just couldn’t take the cumulative effect that occurred from successive rounds of chemo?  What if my body was in breakdown, and the side effects in runaway, like a semi-tractor trailer that loses its brakes as it is going down a hill and can’t stop?  My side effects were gaining speed and effect, and there was no exit runaway lane to slow them down.  Even though I was no longer receiving chemo, the cumulative effect of six rounds of chemo were still affecting me.

You interpret reality from the stories that you tell, the stories that you live, and the stories yet to be told.  These stories are called patterns of meaning and action.  When we tell stories about our experience, these stories help us to make sense of our experience.  Often, our stories are not that useful in helping us to understand the system in its more complex sense.  But they can be useful in helping us to cope with situations in which there are no explanations.

By October 2009, I was so sick that my oncologist was unsure as to whether or not to start me on the two-year maintenance treatment.  I was nauseous all of the time.  I couldn’t walk without the aid of a walker or canes.  I was muddled, unable to think clearly, and having difficulty remembering, and carrying on conversations.  I had severe deep muscle hip pain. I had severe neuropathy (a numbness in a glove-and-stocking pattern, from my waist down and from my elbows down).  I was always exhausted, no energy even to get through a day without an afternoon nap.  I remember asking whether or not doing the two-year maintenance treatment really delayed the cancer coming back.  My onocolgist said yes, but was not sure if that was the case in my subtype of cancer.  My subtype was so rare that there had not been any studies on it that showed that two years of Rituxin infusions increased the time intervals between cancer flare ups.

Henry and I didn’t know what to do.  Before our appointment, we had discussed whether or not it was worth getting sick again with yet another two years of Rituxin.  The oncologist said that he wasn’t sure what kind of side effects I would get.  He even said most people don’t get any side effects.  It was logical to assume that the side effects would be much less, because I was now only taking one drug, not four, and of the four, Rituxin had the least side effects.  It was a nightmare.  There was no certainty, no stability, and certainly no one truth.

I couldn’t find my way back to the comfort of my linear thinking.  All I knew was that I was terrified, terrified of the cancer coming back, terrified of going through chemo again, terrified of yet more treatments with Rituxin for the next two years.  We had no data on what would happen to me if I just received Rituxin.  So, I closed my eyes and jumped.  I took the Rituxin treatment.  I was so scared during the infusion that I started reacting to the infusion before it had even started going into my body.  I didn’t realize it at the time, but my body was now rebelling.  My body was saying no, but I couldn’t hear it.  I never recovered, and even though I got a bit better, I never returned to any semblance of normal.

Whether I liked it or not, I was now fully entrenched in the non-linear world of cancer, cancer treatments, recovery, and something called a new normal.  My world had changed forever.  Even if I got better, I now lived with an incurable cancer that would return again and again about every four to five years.  When it came back, I would be subjected to such withering options as more chemo, radiation, and even a stem cell transplant, all of which would probably destroy what little life I now had.  I had been too sick to be scared during the chemo.  But I was scared now.  What if I didn’t get better?  What if this was now my life?  Henry and I still believed that maybe my recovery would just be slower than other people.  It wouldn’t be until Christmas 2009 that it would start to sink in that I was not going to get much better.

In January, 2011, I entered another non-linear hell.  I had been experiencing drenching night sweats throughout August-October of 2010, and night sweats were a possible sign that the cancer was coming back.  The CT scan showed that I was still clear of any sign of lymphoma, which was really good news.  The bad news was that my neuropathy, and lack of ability to walk without aids, was now considered chronic.  I now had chronic side effects that would not go away.

Non-linear systems are paradoxical.  Ralph D. Stacey, author of Strategic Management and Organisational Dynamics, states that cause and effect and interconnections between agents in the system become unclear because non-linear systems are very complex.  Even though people are dealing with the system as if it were operating under simple cause-and-effect rules (linear), the system is more complex, and therefore not producing linear effects.  It is producing contradictory effects.  Therefore, complex systems require counter-intuitive or non-linear thinking.

I have been in recovery from my lymphoma for just over two years.  My life has not returned to the old normal, nor has it arrived at a new normal.  In January 2010, I was diagnosed with a second cancer, breast cancer.  There’s no question that my world fell apart after the second diagnosis.  There was no linear thinking left for me to hold on to, and, in August 2011, I finally surrendered to the forces of non-linear thinking.  Nothing is as it seems.  What worked before, no longer works now.  The lesson that I have learned is that the longer and harder I hold to my fixed ideas of truth, the longer and harder it is to move forward.

This is true for all of us, whether we are talking about our families or world affairs.  Holding on no matter what it costs is a form of linear thinking.  Linear thinking works really well when there is stability, but fails catastrophically when there is too much instability.  Everyday, I watch the world suffocating in its rigid linear thinking as it grapples with an economic system that no longer works.  For most people, the answer lies in more of the same, and not in something different.  Perhaps the world is simply going through its own form of chemo, side effects, and failed recovery to realize that the answers lie somewhere else – in the land of non-linear thinking.

Note: If you’d like to know more about Marilyn’s cancer journey, check out her blog at www.cancerbrokeallmypencils.com.