June 1, 2016 - The loss of We

Relapse. It’s a word that carries a lot of weight. Diagnosis carries some punch, but the gut kick of relapse carries something altogether different. It’s the knowledge that comes with Relapse that weighs it down. Been there. Faced that. Grueling memories of what comes back around.  The known is the shadow underneath the cheery day of normalcy. I have the badge of having kicked diagnosis in the butt, but that shadow, it’s always there. In contrary, with diagnosis, there is an unknown. It’s unchartered territories yet to be traversed. You are limited to trying to recall the story of a friend’s experience. “Wasn’t she nauseated all the time?” “Remember the time she threw up at the mall?” “Didn’t she have to quit her job?”  “How long did she get treatment?” Or you are left to conjure up the lines out of a celebrity newscast. “Stage 3 liver cancer”…”surgery scheduled for next week”…”she will fight the good fight determined to overcome”…”so brave so strong”…”Hollywood rallies around her”. It’s other people’s stories that give you a glimpse into what you may face with the same diagnosis. But with Relapse, it’s a whole different ballgame.

You have walked the lines yourself before. You vividly recall the gut wrenching heartbreak of hearing the devastating words heavily falling from his mouth, his lips moving in slow motion. And as the words tumbled off his lips they began to absorb every ounce of air around you making it harder and harder to breath as he detailed this scan and that.  Likewise, you can easily conjure up the pains of toxicity like the back of your hand. You can feel the nauseating bile creep up higher into your throat as your thoughts flow back to then. You are in constant notice of the single strand of hair sitting on your shoulder as in premonition of what could lie right around the corner without any warning at all. You can pull into focus that moment when your spouse got the news and the watery eyes that followed. You see, it’s all always there able to be pulled back from the periphery into center view at any moment. You already know most of what lies ahead. And therefore Relapse is weighted a little differently. It’s heavier. It’s the sorrow and fear of “what if” that can come with knowledge.  But if I were to be honest I need to dig a little deeper and ask myself what is that we are really afraid of?

I’ve never been plagued by the worries of a lymphoma relapse. I don’t know if that was my naivety of “lightening never strikes twice” (we totally know relapse is a daily occurrence in this now cancer-stricken world) or my simple perspective of been invincible. You would understand the absurdity of that statement had you truly known my track in life thus far. But it’s still there, this cape of invincible carefully placed across my shoulder and covering me with, well quite honestly, it covers me with stupidity. Whatever we want to call it I simply lived in this world where lymphoma would be a once in a lifetime moment never to be seen again. However, as I matured out of my teenage years and started traversing the knowledgeable days of adulthood and then accumulated the knowledge that comes with my career path, the worry that began to skim its way across my pond of stupidity was compiled not with fear of relapse, but fear of a secondary malignancy or unmanageable toxicity. I guess this was why I was so decisive and so seamless in my decision for mastectomy and so lacking in surprise at the development  fibrosis. I simply expected…something…to come. And I still do.

So while most sit mentally teetering on proverbial edge of the Relapse “what if”, I rather thumb-my-nose  in disregard to relapse as even an option. My alternative “what if” is of second malignancy or life-reducing toxicity, but let's face it. It floats in the very same pond as Relapse. They are joint in their outlook. Dismal some might say. A constant undulating wave of “right around the corner” pooling in the stomach of its owner, who is never quite at ease in the peacefulness in which we try to sit. “Too good to be true”. “It’s only a matter of time”. “I might be the one.” Once you successfully traverse diagnosis, you never fully find yourself back into the peaceful mindset of the un-diagnosed. “What is coming next?” is always there underneath. We constantly carry around in our pockets the reality of statistics. The odds are always greater than zero.  1% is not zero. That reality changes your decision making.  It blurs the edges of your clarity. It makes even the smallest of odds a subtle player in your everyday and can put a noticeable dent in your level of carefree. You find yourself a little more guarded. A little less confident in tomorrow. A nail biter when waiting for routine results. A single tinge of unexpected pain can propel you to a comprehensive and immediate mental regurgitation of your past experience. It’s there. “What if?” 

I’ve recently been pondering what is it that drives that apprehension of what if after a diagnosis? I don’t think it’s the inconvenience (rearranging our schedules for appointments, avoiding this or that with our lost immunity) that a diagnosis can bring that we loathe, nor do I think we fear the pains of financial burden that will come. They most certainly come, but they don’t hold us captive. Nor do we loathe the frustration of feeling our absolute worst, weak, at risk, less than.  That carries a ton of merit, but neither is that the source of worry.  Let’s face it, we know all the nooks and crannies that come with the diagnosis, and it’s not those that make us swell up with fear. These things make diagnosis complicated, a nuisance, a hardship, and something most certainly worthy of creating anger. But our fear is sprouted not of these worthy sources, but rather I more recently find myself discerning that this underlying root of fear is cultivated by the awareness of potential loss. The fear of not winning this time and losing everything we hold precious is the source of our fear and what keeps the “what ifs” of relapse or related complications in the forefront of our minds…for the rest of time.

We are created to love and to be loved. It all comes down to relationship. And in the diagnosis or the relapse we become acutely aware that we have great risk in losing what we have so carefully cultivated. Our children, our spouse, our family and friends. Not loss in that they will turn away from us, but rather loss in that we could potentially leave them behind. We are driven by our fear of outcome. There are other fears interwoven in the strand of worry as supporting actors, each not to be stripped of their own value, but at the core of the strand sits the knowledge that the next outcome might not be “remission”. This time our luck may have run out. This time we may get a different hand. This time…

I'm not afraid of relapse. I'm afraid of what relapse can bring….loss. And honestly, I don’t think there is a single thing we can do to circumvent that fear. It’s a normal response to a rational inherent risk. And it is not something you fully understand until you have been there staring diagnosis in the face, and then again, if you are selected, when you find yourself on the other side now dodging relapse and the other sister follies. But I am working diligently to instead focus on the comfort in what all of that means. I simply value what we were intended to value: We.  For in “we” lies our relationships with the people around us, and we want to be around forever to relish in what all those cumulative relationships bring us: joy, purpose, contentment, pursuit, love, value, focus…and oh so many other things. We is the core of our everything. 

As a friend of mine is facing potential relapse of breast cancer this week and as so many of us as survivors sit in the shadows of a constant awareness of “what if”, I wanted to mentally take a deep dive in to discern the heart of it all. Underneath it all, I don’t fear relapse or related mishap (fibrosis, secondary malignancy heart failure, or whatnot) in and of itself. I simply and very honestly down to the core of everything that I am fear the loss of “We”. And it motivates everything I am and do from the day after diagnosis, and after remission, and now I'm finally realizing it's also in the prospects of "what if". 



Click  www.tradinginthetatas.blogspot.com to access other posts.