A Long Strange Trip Around the Sun

22 Paragraphs From an Armchair Psychologist

About a year ago at this time, JoJo's cancer started to step up the intensity. She had undergone her 4th round of chemo in the latter months of 2009, but it became clear in mid 2010 that the effects were not going to be long lived. Chemo was re-instituted in July, and the side effects were an obstacle that could not be overcome in spite of a number of hospital stays. One thing led to another and before you knew it, we were on board for a stem cell transplant. Work-up began in March 2011 with transplant in May. It seems so simple when you can sum it up in one paragraph.

One of the antibiotics JoJo has been taking during her current hospital stay gave her a very flushed face for a few days; much like a bad sunburn. She asked her doctor if there was anything that could be done to correct it. His response: "Let's just focus on dealing with the two life threatening infections you've got for now. OK?" In the last year, we have lost count of how many times the words "life threatening" have been attached to JoJo's condition. I don't know if we've gotten numb to it, accepted it as a reality we live with or just have an extraordinary faith that the doctors will be able to handle these issues when they occur. Probably some of each.

Indeed, it has been a demanding year. In my early 40's, I used to sit with a smile on my face while thinking about how lucky and blessed our lives were. Without much of a plan and lots of blissful ignorance, JoAnne and I married young, had 4 healthy kids and were enjoying a robust family life supported by good career opportunities. It was so perfect I could occasionally find myself feeling guilty over our good fortune.

Then came Dec. 8th, 1998, two months before JoJo's mom died of esophageal cancer. JoJo was diagnosed with the "good" cancer. So termed good, because it was often treatable for long periods of time, although it was hard to know what long meant. CLL didn't kill you right away. Instead, it is death by a thousand cuts. Long, persistent and interminable.

Still, we feel blessed. We live in a time when medical care has extended JoAnne's life considerably. She is marching towards 13 years, and in that time our kids have grown up and even added grandchildren to the mix. JoJo is pleased to have participated in many life events that she originally feared she might not live to enjoy. And we have the hope for more years through the stem cell transplant that JoJo is currently undergoing. Our lives are still blessed with good fortune, but after 13 years with cancer as our roommate, I no longer feel guilty.

My emotions and attitudes have understandably waxed and waned over the last year. There is the micro or day-to-day level. These are largely dependent on the experiences of the moment and can swing rapidly from fear to elation. You do your best to keep them in check getting never too high or never too low. Then there is the macro or big picture level. As we rolled into last fall/winter and JoAnne's chemo was failing, I found myself in what we refer to as our exit strategy, and had come to terms with the fact that JoAnne would soon die. Even the prospect of a stem cell transplant failed to ignite hope because of the high risk levels we were talking about.

My perspective was further cemented when JoJo suffered an emergency event in the first week of transplant. I learned it can be easier to die than watch someone die. Somewhere during the last 90 days however, hope has been rekindled within me as I watched the nurses and doctors repeatedly protect her against multiple threats. It's not a conscious decision. It is just there. You either feel like she is going to make it or you don't. On the macro side, I feel more hopeful than at any time previously, probably because of the high level of confidence that the UMN staff fosters. That being said, the micro-emotions have been a roller coaster the last couple of weeks, and we are still spending too much time with our toes hanging over the edge of a very high cliff.

Stem cell transplants are a unique brand of struggle and suffering unto themselves. At some point in the process, it occurred to me that we might be able to use our experiences to provide guidance for others who encounter struggles in their lives. If I let the pot simmer for a while, marinated it with copious carafes of cabernet, reached an altered state on occasion, ruminated and achieved a little transcendence, perhaps an epiphany would alight on my doorstep. A vision of dealing with strife and suffering that was simple and elegant would come to me, and I could ease the struggles of others by sharing it with you. In other words, if I got really drunk, maybe I could figure it all out and save you the trouble.

It didn’t take long to realize that it was arrogant of me to think I could come up with the universal answer to one of life's ongoing mysteries. Tragedy, struggle and strife have befallen mankind since the dawn of time and we still lose our way in their presence. And no matter how difficult our struggle, you don't have to look hard to find many suffering far more. There are people everywhere who are far more evolved in dealing with suffering, and it would be presumptuous of me to advise them. If nothing else, I have been duly humbled by experiences of the last 2 years. I can however, tell you what this experience has taught me.

Audre Lord said, "There are no new ideas. There are only new ways of making them felt." In our context, I interpret this as meaning there are no new ideas with regards to suffering and struggle. We are not, however instinctively aware of these ideas or even have a need for them when life is going according to plan. Only when confronted by struggle and strife are we motivated to search for and discover these mechanisms that help us cope. They have always been there

Initially, I was unsure of how to approach the emotional aspects of an undertaking as enormous as a transplant. We live in a culture that promotes the power of positive thinking, action, taking charge and always moving forward. Frankly, I am not a fan of false optimism, which leads some to mistakenly perceive me as a pessimist. A pessimist has been described as an optimist with experience. That is a definition I can buy into. In a perfect world, I aspire to be a serene realist. Changing what I can, accepting what I can't and having the wisdom to know the difference.

In the midst of all my introspection, an article about attitudes presented itself in a guide put out by the National Marrow Donor Program.  It encouraged the reader to understand and honor their personal coping style.  Some people are fighters.  Some thrive on maintaining a positive attitude.  Others take comfort in accepting their situation as it is.  Some release stress by expressing their hopelessness and despair.  Some use a consistent coping style but most rely on a variety of strategies.  You might be upbeat one day, and need to vent the next.  Well meaning family and friends who urge you to simply “look on the bright side” or “be more positive” might actually add to the stress if “being positive” is not the style that is working for you at the time. 

I can work with that. Early on in this ordeal, my cousin Karl put it much more succinctly. "There is no rule book." You try to develop self-awareness. Listen to your head, your heart and your body, and do what you can to keep moving forward on the road even if there is a lot of weaving back and forth between the curbs. As universal as suffering is, each of us experiences it in our own unique and poignant way. Trust yourself and don't let anyone tell you different.

Much of my struggle in life comes in the presence of loss. Many of you are familiar with The Kubler-Ross Model, also known as The Five Stages of Grief. One can debate the scientific merit of the model or its relevance. However, in discovering this years ago, I latched on to it as a helpful guide for assessing and guiding my thought processes. The model was developed for terminally ill patients. Not to minimize its importance, but I find it useful whenever I lose something, no matter how trivial.

The model suggests that grievous loss goes through 5 stages: Denial, Anger, Bargaining, Depression and Acceptance. Someone who loses their car keys can zip through the 5 steps almost instantaneously. One who is terminally ill or loses a close relationship can move through each phase in unpredictable fashion. They can get stuck or move backward. Or they might attempt to mask the process with false coping mechanisms such as drugs or alcohol. The capacity to determine where you are in the grieving process can be helpful in taking steps to move forward. The goal obviously is to arrive at a peaceful acceptance of the new reality and the way your life has changed so that you can carry on. We each move through this process in our own time and of our own accord. It is rarely comfortable. 

I like to think of myself as a pretty normal and average person. I find confidence, comfort, security, peace and serenity, in having some semblance of a plan and expectations of how my life will roll out on a daily basis. That seems pretty normal to me.

A stem cell transplant is anything but a normal experience. I came into this with a lot of experience on the surgical side of medicine. Something is sick or broken? Cut 'em open, remove the disease, repair the break, bypass the clogged artery, sew 'em up and send them off to recovery. Stem cell transplant isn't anywhere near as black and white. The complexity and demands of what JoJo endures is challenging to describe. Nor can I explain how she does it. She has God and a gift. I can honestly say that put in the position of needing a stem cell transplant at this point in my life, the decision to do so would not be a slam dunk.

I am constantly losing direction, control and predictability. Those are foundational elements of a mind at peace. When struggling, I have become adept enough to recognize it and give some thought to where I stand in the stages of loss. Am I moving towards acceptance of new directions, less control and unpredictability? Depending on the severity of the losses in one's life, it can take time to figure it all out. Sometimes, it helps to sit still, immerse yourself in the grief and allow yourself time to dig out from under it all. It is never a comfortable experience and often, you have to be willing to first embrace the pain to eventually get beyond it.  Our culture isn't real understanding or sympathetic to that, but then maybe that's why we spend so much time detaching from reality via other unhealthy coping mechanisms.

It works for me most of the time. Going back to my early 40's again, when looking at people and families going through travails akin to our current lifestyle, I would privately ask myself, "How the heck do they do that? I couldn't do that! I'd probably jump off a bridge." People frequently ask me now how we manage to endure. My only answer is that the human spirit is remarkably resilient and you find a way. There is no out. There is only through.

Most of the time, that is acceptable.

And one more thing. There is a God and he answers prayers.

Cancer Sucks