Manifest Destiny

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I loved The-Manifest Station, long before I ever submitted anything to them for consideration. Imagine my excitement when this piece found its home among the many other beautiful works I’ve read there.
I used to worry I might be a one-note writer. Like illness was all I had to dissect and discuss. Lately, I’ve come to shift gears a bit on this. I’m less apologetic about my musings. For as much as I’ve seen and experienced, perhaps this is precisely the role I’m meant to play. I’ve come to embrace the fact that, for me, cancer is not simply a calling card — it’s a calling.

Sailing the Waves of Cancer: Living With a Disease That Won’t Let Go

Is This Really What I Signed Up For?

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I really love and respect the site AgingCare.com. Not just because the editor is willing to post my work, but because it caters to a population I feel often gets overlooked: Caregivers.

To know a site like AgingCare even exists thrills me. The idea that individuals isolated in their own respective locations can go to one place to get support, practical information and to interact with others in the same predicament is so comforting to me. 404735_2614514794468_1279033597_n

As someone in my early 40’s, I represent an atypical segment of the caregiving population. I was surprised when AgingCare asked me to contribute my views to their blog, but thrilled at the opportunity to share them. I hoped my words might reach someone in the same situation as I once was who feels as I once did, like there is no one else in the world who shares their burden.

In piece linked below I address the notion that at one point or another, none of us feels like we signed up for caregiving. But that we can all take comfort in the fact that it’s okay to feel that way.

Is This Really What I Signed Up For?  Taking care of a husband with cancer while raising three kids younger than ten was a future I never expected when we first said “I do.”

Getting Stoned in 2015

I found these rocks on a beach in Maine after George was diagnosed the first time with melanoma over 10 years ago.
I found these rocks on a beach in Maine after George was diagnosed the first time with melanoma, over 10 years ago.

I’m a perpetual navel gazer, in fact I do it so often that my bellybutton may take out a restraining order on me any day now. So I’ll take any excuse to reflect, like say, the beginning of a new year.

I think back on the previous 12 months and wonder how we managed it all. I look over the pictures I posted on Facebook because, let’s be honest, that is now my photo album, and smile at the moments I shared with my friends and family. I take stock in what I have and whom I love, and I think about the parts of my life that I’d like to change. I also think about (especially over the last few years) the challenges I faced. Basically, I shake up the sand and see what comes loose.

As much as I might like others to catch my attention, it’s always the big-boulder issues that jut out toward the top; the kind with jagged edges that leave psychological cuts and bruises. I know them well, their permanent scars show in my deepest insecurities and chronically bad habits. For years I got pretty good at dodging them; it wasn’t worth the pain of getting close.

In my youth it was easier to turn my back on something painful in my life and pick one of the many visceral pleasures I knew would soothe my ache for the moment. But we all know what that gets you: 15 lbs., a monster Visa bill and a raging headache. Without facing my pain and expressing myself about it, all of my potential steppingstones remained barbed.

As I grew older, and with the help of careers, kids and cancer, I realized that avoidance was no longer a luxury I could afford. To make a lasting change in my life I couldn’t simply sidestep these sharp stones, I had to grab them with both hands, turn them over, investigate them from every angle and suffer the scrapes. It was the only way to create a path through my pain rather than a detour.

Ground down with honesty and reflection, smoothed with attention and familiarity, even the sharpest of edges became easy to touch. I could move and fit these rocks nicely together with other rounded ones from my past. Each painful experience honed and transformed to work together and create a foundation of emotional resilience. And with even more time those challenges, which once seemed huge and insurmountable, became manageable.

The smaller pebbles of my history settled toward the bottom, filling in the cracks of my personal strength, shoring me up for the times when I felt like I might break. Those stones of losing an important job, or the letter from my editor telling me to start again combined to form the base; the grains of my 6th grade heartbreak and getting out-touched in butterfly when I was 10 provided the grout.

At 43, I have come to the age when many of my contemporaries have begun experiencing tangible trauma, and irreplaceable loss. Some have lost parents, spouses and even children to illness and accidents. I see others providing long-term care to loved ones facing disease, at great cost to their own families. They are divorcing, deploying and depressed. Regardless of the circumstance, very few are escaping the damage that only true sorrow can bring.

These are situations that, on a good day, cut so deep and so wide the word “cry” can’t do justice to the kinds of sounds and faces you make — the ones that would terrify your kids if they ever saw or heard you. Even as a writer, I have yet to find a word that accurately describes the head pounding, chest aching sobs that make your heart hurt and you feel in the pit of your stomach.

My family and I have faced some hefty loss, too and it would be so easy to slide into anger, especially when it impacts the lives of children. I have often questioned what could possibly be the purpose of this much hurt for ones so young. But I refuse to accept that any pain we suffer is wasted, or that a tear we shed is in vain.

Instead, I choose to believe that every challenge we face head-on isn’t just important, it is essential to our development as individuals to grow and succeed emotionally. It is by turning those stones and filling in the mortar that we establish our strength. Each time we suffer pain it is simply a building block in transit.

I stand upright because I lost that job, suffered that heartbreak, and got out-touched in butterfly. Because all three of our children were admitted to the hospital before each was a year old. Because my dad died before he could read this. Because George used to have three brothers and now he has one. Because George got cancer and so did I. And because when I see my loved ones suffer my heart breaks. Those are some big, big rocks.

But I keep picking them up, turning them over, getting cut, and figuring out why. And if I spend time working on them I soften the edges enough (I hope) not to get hurt by them again. Then I put them down next to the other weathered rocks to help make me strong. And I do it over and over, building up my footing.

I have always felt that the greatest gift from God is perspective. Since pain can often be a breeding ground for myopia, a step up is a great tool to prevent me from getting stuck. With each stone under my feet my view gets bigger and better; I guess I can thank my struggles, in part, for that vista.

I know I have much to experience, much to learn, but with each challenge the process gets simpler. And I know that all of my challenges have worth. I’m not done building, but it’s a start.

Wishing you all a year of rounded rocks.

–b

The One Vehicle I Never Wanted to Drive

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I don’t recall my first views of MD Anderson Cancer Center’s pink stucco exterior, or its halls lined with huge photos alternating between patient success testimonials, physician quotes of confidence about research and facility innovation, and picturesque beaches from across the globe. Salty tears and deathly fears quickly washed away any initial impressions.

What I do remember is feeling completely overwhelmed with the responsibility of keeping my husband, George, alive. That, the lobby, and feeling like all I saw around me was death and wheelchairs.

George is a doctor, a really good one. But when he was diagnosed with recurrent metastatic melanoma, he needed to disconnect from the reality of what he faced and allow me to vet the medical options available. He just wanted to play golf and escape, to bury his head in the sand pit.

He had been initially diagnosed with stage IIIA disease five years earlier and had done quite well on a drug called Interferon. It was a treatment meant to utilize his immune system to seek out and destroy any remaining, floating cancer cells in his system that weren’t cut out during surgery. He made it five years without incident, but there must have been a few crafty ones left that evaded the Interferon and took up residence because the cancer came raging back.

Melanoma is unlike any other cancer I know. You can never, ever relax your guard once you have been unlucky enough to be diagnosed with an advanced stage. It can resurface at any time, in any place and often, just when you think you are in the clear, it rears its head and proves just how silly and naïve you were to imagine you had any control at all. If cancer is evil, which I believe it is, melanoma may in fact be the devil.

Breast cancer, on the other hand, is like the minivan of the disease. It tends to be obvious and follow a relatively predictable pattern; there are lots of the same kinds and they’re pretty easy to spot. Sometimes breast cancer can fool you and stealthily hide a super-charged motor under the hood. Or it can occasionally house lots of friends behind its tempered glass, waiting to unload and create havoc in multiple parts of your body, but because breast cancer is so common, there are lots of places to have it treated and many options to try.

It may not be an accident that, as a breast cancer patient myself, I own an Odyssey. I guess it also might not be a coincidence that, as a notorious lead-foot, my cancer turned out to be pretty aggressive.

I certainly consulted MD Anderson (which is based in Houston, Texas) when I was diagnosed, especially given George’s successful experience there. But my case didn’t warrant traveling half way across the country to get the same treatment I could receive in my own backyard.

People can be directed to a place like MD Anderson because their case is highly unusual, but most often it’s because they have run out of options; their disease won’t allow them time to take more than one shot at killing it before it kills them.

These individuals need the best medicine our country has to offer, and they get it there every single day. But the initial walk through the place can make your stomach turn from the sight of so much discomfort, sickness and pain.

When George and I arrived for our first visit we had no idea what to expect. Our only hospital experiences to that point had been in rural or regional settings, and we knew no one else our age with cancer.

We were terrified of what we might hear, but also hopeful that the doctors there were ones who would be able to provide the options we were so desperately seeking. After a prognosis from another very reputable institution of approximately six weeks of life for George, I knew that this was our first (and last) stop.

I remember nothing about the drive to the hospital on the first day of our first visit; my recollection begins after handing the keys to the valet in front of the main lobby. It was a particularly hot early summer day, even by Texas standards, and getting into the building felt good after standing outside for just the few minutes it took to hand over the keys and a tip.

George and I walked toward the information desk, past the multiple seating areas filled with oversized upholstered chairs in muted blues and purples, with clusters of individuals in hushed, intimate conversation.

Some people had smiles, but most dotted their bloodshot, glassy eyes with tissues.

Streams of bubbles worked their way from the bottom up in straight lines in several floor-to-ceiling tanks of water the length of the wall, creating a watery, white noise backdrop I would come to count on. The air was a mix of fragrance over alcohol, no doubt from the hand sanitizing stations at every corner, replete with signs encouraging all visitors to use them regularly.

As George and I tried to get our bearings, wheelchairs rolled in a constant flow from one end of the lobby to the other. I couldn’t help thinking, as I looked on, that those patients carried in these shiny, chrome vessels could only be classified as passengers, not participants, in life.

They appeared so close to death already, their faces gaunt, skin gray with illness. Most were bald and wrapped in blankets or sweatshirts, while just outside the sliding glass doors the mid-June sun blazed so hot and so high it created a shimmer just above the sidewalk surface. Some wore masks, guarding them against any airborne infection that could prove too much for their weakened immune system.

I would later learn that, for those who went to a place like MD Anderson, a common cold could mean the difference between an ordinary interval between chemotherapy treatments and a delay; a luxury no longer afforded to patients this ill.

Time is, perhaps, the most valuable drug major cancer hospitals have to offer. Time and hope. Many people would pay any price, tolerate any discomfort and sacrifice everything in their personal lives to get both.

I guiltily avoided any eye contact with those riding in the wheelchairs. It went beyond wouldn’t—I couldn’t look at them in their eyes because, in their deathly gaze, I saw George’s future.

Up until then, cancer had been simply a term in the ether, a concept. The minute we stepped into that lobby it became an actual disease capable of killing my partner in life and in love. Even as George walked in pace and step next to me, the picture of health and vigor, I knew under his skin and within his organs with every passing moment his cells were dividing and spreading, attempting to take over.

As the months passed, I learned how to spot the veteran wheelchair “drivers,” the ones who can manage to simultaneously push both handles of the chair, drag an IV pole and avoid crashing into furniture or other people.

I would also get smacked with the reality that those who looked closest to death were often the ones fighting the hardest to avoid it. And that those sitting in the chairs weren’t hollow shells of their former selves, they had simply been leveled by the grind of disease, surgeries and treatments.

I discovered all of this because, eventually, George became the gaunt, gray passenger, and I became the veteran driver.

Caring for Those Who Care

Recently I was asked to contribute as a blogger for the website Agingcare.com. The editor came across one of my Huffington Post articles and felt the topics and style of my writing would appeal to her audience.  1936123_1224187157146_7861387_n

I have focused so much of my time and attention, not to mention my writing, reflecting on aspects of my breast cancer diagnosis and treatment. To go back and begin reliving moments in my mind of what it felt to be a caregiver to George has been both painful and rewarding.

Watching a loved one suffer or deteriorate is absolutely brutal, yet spouses, parents, same-sex partners, siblings, friends, and countless other supporters put their own lives on hold to take care of another. Caregivers are a largely neglected, but essential piece of the healthcare puzzle, and as insurance providers look for areas in which to cut costs no doubt this group will be called upon in an even greater capacity.

I look forward to helping bring some attention to this segment who deserves more recognition than they currently receive. After living that life, and not for very long, I can say I have never had more respect for those who do it day in and day out. They are champions.

Seeking Sanctuary In the Shower