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Metastatic in the Land of the Living

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My world is going by too fast. The volume is up before I leave my bed in the morning. I try to rein it in, but there is always some invisible force in my head countering that effort; applying pressure for me to keep up, keep moving. It emits a sound that has a steady cadence to it; a forward momentum. And it's loud. At least, to me. So, I get up at 5:00 every morning.

This is not about having too many electronic devices and overdosing on social media by way of my iPad, smartphone and laptop. Today, I am sitting in my peaceful, isolated yard on a gorgeous spring day, when I should be listening to the dependable soundtrack of the Saugatuck River and a few birds chatting around the feeders; but instead, I hear the seconds ticking by with the persistence of a giant metronome, tracking time wasted rather than time fulfilled. I have metastatic breast cancer.

And I'm troubled by a phone call I received yesterday. A friend, calling from her car to "check in on me" was trying earnestly, albeit clumsily, to include me in her work-life narrative but was circling way outside my narrow orbit and quickly ran out of things to say. She's a chatter-hound. She is never at a loss. But today, she was off her game and sounded harried and uncomfortable. We talked over each other. We had lost our rhythm. She didn't hear most of what I said, and I was, if I'm being honest, ultimately uninterested in what she was saying. After all, I am stuck in the house today because of crippling fatigue and the incessant pain in my legs from my last chemo blast, so I am having trouble relating to her latest work angst, and am more than a little annoyed that this phone call just made me feel pitiable in her eyes. Not that I don't care about her or her work drama, I do. But I no longer had anything of substance to offer in response that I hadn't already said before. She was still moving in a professional world I had to leave behind. The static on her mobile connection became metaphorical and I made an excuse to say good-bye to kill the awkwardness. In hindsight and in her defense, she was the one who was trying. I was just being pitiful.

When you have cancer, or I would imagine, any incurable advanced disease, time hangs heavy in the air, no matter how lovely the spring day. Some friends begin to slowly, almost imperceptibly, drift toward the horizon beyond your field of vision. The sound of the birds and the river and the insects are no less a wonder today, but they are subsumed by the louder more insistent noises in my head; the ones no one else can hear. Nor would they want to. So, I let some friends drift.

When I meditate, I see the same visual over and over again until it becomes so hypnotic I can sleep sitting up. It is a black aperture in the shape of a human eye with nothing coming back at me except the overwhelming sensation that I could get to the other side if I wanted to. Which I guess is the point. I don't want to. I am still not completely accustomed to the idea of being sick for the remainder of my life. The concept or philosophy of living and dying at the same time that so many Stage 4 cancer patients eventually adopt is one we should all embrace on some level to help us push on through our fears, excuses and procrastination. But we don't. How could we unless we are forced to? No, most of us live from task to task, conversation to conversation, event to event, meal to meal. Circling days on the calendar and checking off To-Do lists. Occasionally, when someone close to our heart becomes very ill or dies, we get a grief-induced spurt of fearlessness to counteract our brush with mortality; a surge of Carpe Diem spirit. A heartfelt renewal of relationships we allowed our busy lives to obscure. And then despite all good intentions, it fades.

Even in mid-life, when we arguably worry more about our future and possibly even our own death or the death of others from the onset of illnesses we are now more prone to, we don't dwell there. How could we? It is all unknowable and our hearts and minds simply cannot stay in that muck and continue to be happy and productive humans. But oh, how we plan, and dream, and talk endlessly about things in our future -- those mysterious days, months and years ahead of us -- as if we are guaranteed a seat on the bus that will take us there alongside everyone we love. That is the very business of being in The Land of the Living! Not just the moment; but the assumption of the future moment when things will be better or different, or in some storybooks, perfectly unchanged.

Thankfully, I am not actively dying, but I know I have limited time, so I hold on to this middle ground. A position where I have one foot in two worlds: The Living World filled with tasks and energy and talk of things that will happen soon or at some later date, embracing all the activities of my loved ones and participating when I can. A world in which, although I had to stop working, I published my first book and continue to write and advocate for a cure for breast cancer; a world that is joyful and on good days, completely of my own making. I have one foot gratefully planted in this world of willfully trying to swim the same tide as everyone around me to keep reality at bay.

The other foot is in The Sick World. The place where I manage chemo's debilitating side-effects and endless doctor visits; where I navigate life moving fearfully from scan to scan. A world in which I am branded by a port protruding from my chest so I can always be ready for injections. A place that grows narrower and less populated with every passing month; where each day's journey begins as a tightrope walk to stay emotionally focused; where I avoid any future commitment more than two months hence. A fragile place that after seven years, countless surgeries and thousands of drugs ingested or pumped into my body, has left me a wisp of my former self; scarred and hairless and valiantly, some might say stupidly, still trying to slay a mighty dragon with a poison slingshot. Not because I don't know these drugs will eventually fail, but because it's all I have to work with for now. If all of this sounds utterly hopeless to you, please take a moment and Google "treatment for metastatic breast cancer."

I ride waves of being able to thrive in The Living World, at times completely drowning out the incessant metronome. Then, often without warning, I crash and get pummeled, sucked into the undertow of bad news, shrinking quality of life, and pain. I suppose it's like everyone's timeline in life, just condensed into a smaller space, and amplified, like the inescapably shrill sound of crickets on a summer night when you can't sleep.

But hear me out, just because these things are knowable does not mean they make for good conversation. So, they mostly stay in my head. Or I fitfully write them down, usually making no sense at all and deleting it before my husband comes home from work. My tangible world with all my beloved people in it is speeding past me. My future world that used to house all my grand plans and crazy hopes, and was my common denominator in The Living World, is vanishing before my eyes.

All but for the noise; the busy, jumbled sound of dreams with nowhere to go.

By Jude Callirgos, Author of "Breast Left Unsaid" http://breastleftunsaid.com