29. Adjustment

Cancer survivors are different than other people. Not better. Not worse. Just, um, different. Many cancer survivors, and others who have had serious medical problems, live in a world that few others we know have experienced: what it's like to face the prospect of near-term death, and then been given a (temporary) reprieve. The short-hand I use to describe my situation is Life 2.0. It is life, of course. But, to use a sports analogy, it's a whole new ballgame.

People see me now, see that I look just about the same physically, and conclude that my life has been restored to normal. They don't see the body parts that are no longer there, leaving me with alternatives (if that) that sometimes can be a struggle to use. They don't see the mark left by the experiences I endured just to have a shot at life. They think of me as cured, when I actually live with the threat of recurrence.

In this sense, I am not surprised nor judgmental. What I have noticed is that people tend to think linerally and in relatable categories. When they see cancer survivors, they see our life arc as Normal, Crisis, Normal. This is the only way they can relate to us. They understand Normal, as in our lives pre-diagnosis. And they understand Crisis: an event has occurred, and it is bad. They get that, if only from a detached point of view. When they see you again, with you having emerged from crisis, they relate to you as back to normal. That is their frame of reference. When colleagues at work ask me how I'm doing, I sometimes reply: "Well, I'm still here." To them, "still here" means still at the company, and they nod. I actually mean something quite different.

These and other people are unable to see that I live in a different category now. Physically and mentally, I am in a space that is not Crisis but is not Normal. For lack of a better word, I call it Adjustment.

Physically, the illness and surgeries have imposed life-style changes. Certain bodily functions are more complicated to perform than my previous normal. My body is more prone to infections, dehyrdration and weakness. Mentally, sometimes I am brought back to that terrible time, triggered by learning of another person with cancer or, innocently enough, the sound of an advertising chime I heard a lot when I was sick. For a moment, my body tenses up and my heart beats a bit faster.

Another difference from Normal: since I must deal with the possibility of recurrence, I go through more medical scrutiny than others. Since my new systems malfunction from time to time, I see a lot of medical mechanics in white coats and blue gowns. As a result, I spend more of my time at the doctor and hospital than, say, the latest happy hour.

For instance, in 2013, I had 56 medical appointments. Some were routine, involving blood draws for the millioneth time. Others fixed, or attempted to fix, a problem or side-effect. Still others were one of many addressing a bigger problem, which culminated in yet another surgery. Case in point: in the fall of 2013, I suffered from a urinary track infection, a common and sometimes serious side-effect of my condition. Perhaps coincidentally, at the same time, my neobladder stopped working altogether. Welcome back to the hospital.

Other appointments have been easy on the body, but tough on the mind. Each time I visit the oncologist or surgeon, I sit in the waiting room and a weird feeling comes over me. Memories of the past. Then, when I meet with the doctor, I hold my breath before I hear the results of the latest body scan or blood test. The doctors even want to know about seemingly normal aches and pains, because some can be an indicator of recurrence. And, inevitably, I am sent for more tests. The Circle of Life. I can see how some cancer survivors become hypochondriacs.

Still, there have been lighter moments. At a recent visit with my oncologist, he said that if my remission continued another year, my odds for long-term survival jump to 75 percent or so. Hey, that's great, I said. But...weren't we talking about the same odds a couple years ago, only in the negative direction? Do I get to choose which 75 percent I believe in? Whatever happened to that "statistic of one"? He smiled. I smiled. But we both knew.

This is kinda the life I now have. I don't recount it here to complain about my condition. After all, I have been given a shot at extended life. And that's been worth all the suffering, trauma and life-style changes I've had to endure. Instead, I recount all this to explain how I, and possibily others like me, live in a stage of life, Adjustment, that exists somewhere between Normal and Crisis.

Others cannot really process the concept of my adjustment, mostly because it requires a rather extensive knowledge of the situation and the abiity to relate to it. To many outside my circle of family and friends, they cannot relate to the former, and they have strained capacity for the latter. The result: many casual relationships, those formed by common experiences or interests, have become weaker. We simply have less in common.

The flipside: my relationships with family and close friends have become stronger. I'm more engaged in others' lives, and they with me. Recently, Stephen suffered a concussion, believed it was 2012 and not 2014, and worryingly asked Kate, "Where's Dad?" thinking I might be in the hospital or worse. (He's better now.) It tells you a lot when that's one of his initial thoughts during an experience like that. For me, I spend much more time thinking about how I can help my boys transition to adulthood.

Also, I have this newfound ability to relate to people with medical difficulties. Indeed, friends seek me out just for this reason. I've joined the club of cancer survivors, and developed a nice bond with them. Compared to others, we speak a different language, focus on different things, and gain enjoyment from different experiences. As I've mentioned before, cancer survivors are a great club to belong to, but you don't want to pay the admission fee.

So my experiences have shifted the composition of people I interact with and where I invest my energy. Much less involvement with a large number of situational relationships based on experiences that are no longer important to me. Much more with those inside my extended family, select cancer survivors with whom I share a new bond, and new friendships I've developed during my recovery. The common threads? Less time spent on transitory matters. More time spent on fewer, core matters of life and how to live it.

Another change: changing for change sake. When Kate floated the idea of moving to a different house, I thought about the economics of the decision but also about leaving behind the past. We moved. When I looked at my car and its maintenance costs but also its own illness-laden memories, I did exactly the same thing. Gone. One area I decided to keep for a time: work. When I went back to work in 2012, I knew I needed to remain at the same employer into 2014. Then, and only then, would I, as someone with a pre-existing medical condition, no longer risk being denied health insurance if I changed employers. (Obamacare created this new protection.) Now the calendar has turned, opening up options for me.

Life 2.0 is about building a new life, embracing a new appreciation for it, and introducing change where and when I can. It means carefully selecting which elements of my past to bring into my future, and closing the book on everything else. But all these decisions and changes don't happen all at once. They take time. In this sense, Adjustment seems like a transition state to something better. I haven't fully gotten there yet. But when I do, I'll let you know what it's like.

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Reader Comments (1)

Wow. I could not have described it better, and believe me, I've tried...for almost 20 years. Now I face a new cancer, which I'm told is the result of extensive radiation treatments I received for my first cancer.
Everything you described has happened to me. When I face this crisis, I no longer have the best friend who helped me through the first one. It's so true. People think the crisis really is over, and ask "Why aren't you the same?"...some just got tired of waiting.
Thanks for your post. I, myself fear that I don't have it in me to do this again...but if I do, it will be with the small group of family and friends I still have who already "get it".

May 20, 2014 | Unregistered CommenterLaurie

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