Andrew and Esther Schorr Andrew and Esther Schorr

When Andrew was diagnosed with CLL (chronic lymphocytic leukemia) in 1996, all I could imagine as a future was widowhood.? With two small children and hopes for a third, my grief at his diagnosis combined with deep-seated fear of being left alone literally immobilized me.? It was only through counseling—together and individually—and the addition for me of medication to calm the anxiety that has always been part of my DNA, that I was able to get a grip on what I needed to do to support Andrew, shield my young kids from the pain and sadness we were feeling, and come to terms with how we together would meet the challenge of an illness we knew had no cure and variable outcomes.

By nature, Andrew is a much more even-keeled, pragmatic sort—I have always depended on him to look at a bump in the road or an unexpected curveball through an optimistic lens.? This was a tough situation for even him to view this way, but together we decided that the best way to get our heads around what this really meant was to learn as much as we could about the disease, find out how the illness was treated, who were the experts, and talk to others further down the treatment road.? Somehow, making what was completely unknown a little less mysterious made it a bit less scary and made us both feel just a bit more in control.? This concept of "knowledge is power" has stuck with us through Andrew's CLL treatment in a clinical trial and a lasting remission, a second cancer diagnosis, and current treatment with a cutting-edge drug that continues to allow him to lead a very full and active life.? But I don't want to spend time here retelling the diagnosis and treatment story…I want to share how I, as Andrew's care partner and life partner, have come to put one foot in front of the other every day.

From the moment Andrew was first diagnosed with cancer, it was abundantly clear that neither of us could have prevented it.? This was not a controllable variable in his lifestyle, not attributable to bad or risky behavior—it just happened.? So, as Andrew's partner, there was really no way I could say "If only you had…" or looking to the future say "If you do X, maybe this will just go away…”? I could not "will it" to retreat, nor could I affect how the course of the disease and its treatments would unfold.? I had to simply let go of control.? I could help research clinical trials, support Andrew through treatment, but most of all I had to make a decision about how I would cope with a greater level of future uncertain than in a partnership where cancer—or any chronic illness—is not a part of the daily equation.? My decision has been to live in the NOW as much as I can.? But it was not a quick route to that conclusion.

One of the most difficult periods?of our shared journey was during the first four years after Andrew’s diagnosis.? With some chronic cancers, it is not at all unusual to be told “let’s just watch and wait”—no treatment now because treatment would no doubt be worse than the minimal symptoms typical in the early course of disease.? Andrew literally had NO symptoms for a few years…at least none that impacted his activities at all.? He ran many miles a week, biked, worked full-time, handled the chaos of a house full of young children—it all felt normal.? The only symptom we knew of was a rising white blood cell count.? Every few months, Andrew had a blood draw and came back with an ever-rising number. No symptoms, just numbers.? It was this “no nothing and wait” that made me crazy…with fear and anger.? How could the doctors just sit by and watch Andrew get deeper into a potentially terminal disease state?? How could I possibly sleep at night knowing that with each passing day something bad was getting worse and that sooner or later the proverbial “other shoe” would drop?

The few days before Andrew had to go in for his blood draw were hell for me.? On the one hand, I hoped for a nice surprise of a no-progression result.  And on the other, I had to steel myself for ever bigger counts.? The truth be told, I felt a great sense of twisted relief when it was finally time for Andrew to get treatment. NOW we were doing something!? The clinical trial process has its ups and downs, for sure, but during those six months I came to the conclusion that the only way to emotionally survive and support Andrew was to make the most of each day together, have some measure of faith, and let go of any delusion of true control.

Living in the now doesn't mean that I—that we—don't think about the future at all.? We do.?? We agreed that living overseas for an international experience was something we'd love to try—so we made a plan and did it. We plan trips to countries we've never been to—and we go. We want to be closer to our family than we have been of late, so we plan to move closer to them in the next year.? We are blessed to have the resources to do many of these things. And even if some of them stretch us financially or logistically, we try to make it happen anyway.? As Andrew likes to say, "If YES is at all possible, we do it."? By operating this way, I feel as though no matter how our journey together unfolds, we won't be able to say "if only…" about very many things.

Do I ever feel scared?? Afraid that another shoe will drop with Andrew's health?? Do I get angry that this is part of our life together? You BET I do.? And when that happens, I have a good cry…I reach out to my closest comrades and lean on them for comfort.? And I have a conversation with myself that essentially says, "I have choice here…I can crawl into a deep dark place, feel sorry for myself, for Andrew, for my children, and become immobilized as I was so many years ago…or I can choose to put one foot in front of the other, enjoy today…enjoy my time with my life partner, do things that make me happy, bask in the joy of my amazing children and a world that never stops surprising me…and let this unfold…because I cannot change the outcome—I can only live in the now…"

How have you coped with “watch and wait” as a care partner? Share your story in the comments section.

Stay tuned for Part 3 of this blog series, as I share some thoughts about how becoming a "care mentor" and advocate has helped put Andrew's and my journey in perspective.

Sincerely,

Esther Schorr

 

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