Tag Archives: colon cancer

Life and Yellow Lights

An involuntary cry caught in my throat as I watched the car I was following speed down the road while I braked to a sudden stop. The yellow light flickered to red and the car disappeared around a curve.

“Mama?”

I heard my girl’s voice from the back seat. A little quaver, not panic. She’s gotten so good – too good – at picking up every tiny shift in my emotional barometer.

“Where did they go? Are we going to be lost now?”

I replied mechanically, the same words I’ve used over and over and over these last eighteen months in every situation that I’m unsure of: “We’re okay. We’ll be fine.”

A tear slid down my cheek. I hoped my oversized sunglasses hid it from my daughter’s eyes, peering at me from her backseat perch. It’s such stupid stuff that makes me cry these days. Random stuff. A missed phone call, a canceled get-together, a song playing in a store, a car leaving me behind at a stoplight. The wicked, crushing sobs of that first fresh grief no longer overwhelm me, but these smaller moments when tears sting my eyes unexpectedly are no less painful or powerful. I still can’t control the anguish when grief prickles and probes at the gaping black loneliness I feel without Kevin.

We’re okay. We’ll be fine. I think, I added.

I need Kevin, I thought a little hysterically, and another tear dripped off my chin and rolled down the seatbelt. I need Kevin and his maps. It was a little joke that every major car trip included him handing me a stack of pages printed from Mapquest. He drove and I navigated, pulling one map after another out of his carefully-prepared trip binder. Not that we didn’t still get turned around and off the beaten track a few times, computer and human error being unavoidable, but at least we had a map.

I didn’t have a map. Not for this road, and certainly not for this life.

I need Kevin.

The light finally turned green and I lurched forward, hitting the gas pedal too hard as I tried to catch up to the other car, tried to close the gap between us. Impossible. I felt trapped in a nightmare of those stupid word problems that confounded me in math class: If Car A is traveling x miles per hour and has a five minute head start, at what point will Car B, traveling y miles per hour catch up?

Answer: Never. The answer is never, never, never.

I will never catch up. Not on this physical road. Not on the metaphorical road. As much as I try to keep up with the other cars and people, and blend in with the traffic and activities, and just keep life going on, going forward, grief is like a yellow light flashing to red. It slows me down, forces me to stop, and life…well, it goes speeding by.

But as I’m stopped, waiting for my chance to get back on the road, to get going again, I realize what I told my daughter is true.

I don’t have to catch up. I can travel at the speed that works for me and we’re okay. We’ll be fine.

I know.

Because I do have maps. God wouldn’t leave me wandering.

When I’m sad and desperately missing my best friend, I think about Kevin and his maps. And then I hear God say, Find Joy — there’s some in every day if you look — and start there and then keep going. It will take you straight to Peace. The road twists a little, there are some sharp curves, and it might take a long time, but just keep going; you can’t miss it. I promise.

When I’m scared and lonely and need someone to talk to, I imagine God holding another map up to me. If you take Prayer, He says, that street right here, see? Well, just stay on it for a while, no stopping, and Comfort will be coming up soon.

Living with cancer is not an easy road. There are lots of dead-ends and Road Closed Ahead signs. Detours and No U-Turns Allowed are all over the place – even when all you want is to find the road that gets you back to the life you had before – the one without cancer. After a while, you accept the fact that the road you most want isn’t on any map you hold anymore. You have a new map, and new roads to travel, and you just have to figure out the best route to get through one of the toughest journeys in life. And we did it. We got turned around and lost sometimes, and Kevin being Kevin, maybe even tried a couple of illegal u-turns, but that never stopped us. We kept going and we managed to find the roads to Joy and Love and Happiness. God helped us, with an ear tender to our cries for help and the best guidebook ever written. And He’s helping me still.

Life is moving forward. That much I know is true. It’s still moving much too fast for me right now. Sometimes there will be people to follow, helping me find my way along this bumpy road, and sometimes I’ll get slowed down by grief and sadness and I’ll be on my own, navigating the hills and valleys by myself. When that happens, I’ll reach out for the travel binder, full of maps and love and memories, and I’ll just keep going. That’s the only way to get to the joy that’s waiting over the next hill. And there is joy over the next hill. That I know for sure is true. God promised it, Kevin’s living it, and I just have to keep believing I’ll find it.

Then Jacob made a vow, saying, ‘If God will be with me and will watch over me on this journey I am taking…then the Lord will be my God…’” (Genesis 28:20-21)

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A Time to Keep

I smiled when I glanced out the door of the guest bedroom. She’d dragged a rocking chair and footstool out to the small landing and positioned herself at the top of the stairs, right outside the door. With book in hand, she determined that we’d be together, even though I was waist-deep in storage tubs, sorting through all the clothes she’d ever worn. It was a project I’d been putting off for years and at 12:15 that wintry Sunday afternoon, I decided it was the day to get it done.

I’d settled into a rhythm, shaking out each item, checking the tag for size, sorting into piles to donate, filling a bag for stuff too stained or worn out to wear but perfect for recycling. Shake, check, sort. Shake, check, sort. Pop a new lid, start again. Shake, check, sort.

Until I got to the tub with the green lid. Sizes 2T to 3T.

2008.

My hand faltered as I stretched it toward the brilliantly vivid piles of soft cottons and cozy fleece. Long sleeves, tank tops, sweatpants, capris, sweaters, dresses – a year’s worth of clothing for all seasons. Including the season we’d reluctantly found ourselves in: a season of cancer and chemotherapy.

I pulled the sweater on top to me. The lime green and cherry red Christmas stripes – so bright and cheery. Wrapped around her tiny toddler frame, it brightened our Christmas card photo that year. She sat tucked snugly on a stepstool between me and Kevin, his hair thinning from six months of chemo, eyes weary with the sparkle gone, my smile a bit forced, as if determined to be joyful. No matter what.

I set it down, and reached out again. Autumn leaves and vibrant orange and hot pink stripes decorated my girl and I heard her giggling as she danced in the dry crackling leaves. I raked outside our bedroom window, one ear on the melody she sing-songed into the air in delight, the other straining to hear if he needed me to open a pill bottle or bring him a drink of water. Chemo weekend, and we soaked up the weakening sun while the poison dripped through his body.

Tank tops in every hue of the rainbow, and turquoise capri pants with a swinging tunic billowing as she raced around the backyard, popsicle dripping in the heat and her beloved, battered Duckie bouncing along for the ride. Kevin pulled into the garage, drained from the workday and the torment of being unable to cool off with an iced drink; the chemo made his body painfully sensitive to the cold temperatures. But he summoned the strength to push her on the swingset in the lingering twilight, and she squealed as she flew haphazardly into the muggy air.

There was not a single thread in that tub that didn’t stir a memory. That first hard year is etched in the hidden niches of my mind, though at the time, I remember only the dazed feeling of trying to stumble through each hour after being blindsided by cancer. It all happened so fast, and we never caught up, though we raced to doctor appointments and surgeries and chemotherapy, and we pored over all the new words and phrases and drug instructions, and searched natural cures in our spare time. And the minutes ticked by and the calendar pages tore away; time was slipping through our hands.

My sorting rhythm slowed. Stopped. I sat, tested myself, and felt strong enough to let the memories out to wander for a bit. Some days it’s easier to shut down, but we were snug in the doorway of the bedroom as the winter outside howled and spit flakes and icy bits. It felt safe.

She looked up and saw me sitting still.

She marked her page with one finger and, taking in the disarray around me, asked: “Are you all done, Mama?”

I laughed.

“No, baby bear, I am absolutely not done. I’m just thinking about all the stories sewn up in the clothes in this tub.” I teased her, “Back when you were a teeny, tiny toddler, and you didn’t ask for your allowance…just more popsicles!”

She tried to roll her eyes, but her eight-year-old self couldn’t quite pull it off, and as I stretched my hand from the fabrics pooled around me to tickle the bottom of her foot, an impish grin — her Daddy’s grin –spread across her face.

A small part of me wanted to pack the clothes back up and store them away again, reluctant to let the cotton fibers stretch too far away from me, and snap the threads of my memories.

But to what end?

There’s no going back in life, only forward. And the clothes served their purpose. Their bright colors and vivid patterns couldn’t hope to match the vivacious spirit of the little girl they clothed that year. Her giggles bubbled up inside and spilled out and we caught them in our hands, outstretched to grasp any bit of hope floating that year. She perched on Kevin’s lap, and patted the infusion bag of “Daddy’s medicine” gently, chattering to Dora the Explorer on television, and her energy soaked into him and pushed the fatigue aside, if only for a few minutes.

It was never the clothes.

It was always her.

Full of life, she pushed her Daddy to fight for his.

Our teensy fairy sprite didn’t fully understand how much her life changed that year. She didn’t know that words like “colon cancer” and “tumor” and “Stage 4” threatened to shred the fabric of her happy childhood. She knew Mama, she knew Daddy, and she knew joy. And with every word and dance and giggle and twirl that year, she brought it. She brought joy and she brought life. And she sewed them together tightly and cloaked us with love.

She made us grateful for every minute we had together.

It’s almost six years later now, and she knows all about those hateful words. She knows what happens sometimes when those words come into a life. I wish she didn’t, but she does.

But she still knows the other words – the important words.

HOPE. LOVE. JOY. FAMILY.

She still dances with delight and giggles with glee, and sings with sweet notes that echo to heaven and her Daddy smiles down on her.

She’s still working her special brand of magic.

Full of life, she pushes me to keep living mine.

It was never the clothes.

It was always her.

Believe

Her face beamed as she handed me the paper this past January.

“I know Christmas is over, Mama, but I’m getting ready for next year.”

That’s my girl. Just like her Mama, always planning ahead. Making lists, checking things off. I skimmed the list, laughing at her practicality and her whimsy: Sharpies, a whole pack! A wish upon a star! Spinning top!
But then three words silenced me.

Cancer-curing kit!

I raised my head. Gazed at her as she smiled to herself, still chortling and feeling quite clever at preparing a wish list eleven months before necessary.

“Beary? What’s this?” I asked, pointing to the cancer-curing kit.

“Oh, you know, Mama, a kit that I can have to cure Daddy’s cancer. Then he won’t be sick and at the hospital. And if I have a kit, then no one will get cancer again.” She answered with her usual matter-of-factness, dismissing my puzzlement with a wave of her hand.

“Uh, yeah, but I’ve never seen a cancer-curing kit before. I don’t know…are you sure they make them? I mean, that’s sort of what chemo is for, right?”

“A kit works faster than chemo, Mama.” She was so solicitous of my obvious ignorance, so adamant in her certainty.

I had no words. Truthfully? I wanted a cancer-curing kit, too. I wanted Kevin to be healthy again, able to be fully present with us again. Not weakened and dragged down by the endless chemo, the endless poison, the endless…cancer.

So I shrugged and she danced, and we both wished for the impossible. A cancer-curing kit.

We didn’t get it.

Not the impossible and not the kit.

We prayed. We wished. We hoped. And Kevin fought longer and harder than anyone expected. But none of it was enough.

It’s Christmas now, and there’s been no more mention of the kit. But it’s not because she’s given up on the idea. Her whimsy and imagination and absolute certainty in how life should unfold wouldn’t allow it. No, she hasn’t given up on the idea of a kit; she just decided that she’d have to be the one to make it happen.

After an exhaustive discussion about cadavers, infectious disease, and vaccinations, she turned to me and earnestly said, “Mama, I am going to be the one to figure out how to stop cancer from ever growing. Not figure out what to do when it’s already in your body, but how to keep it from even getting there. I can do it. Do you believe me?”

You bet, little girl. I believe you.

It’s funny what we choose to believe in, even when everything in life conspires against our faith and shakes our confidence. Even when things are so hard that it feels impossible to keep going. But we do it. We keep going on; we keep believing, trusting. And right now, at Christmas, there is so much in which to believe, so much to open our hearts to. And I do believe. I believe in the spirit of Santa Claus, as we spread happiness and compassion to those around us. I believe our holy God sent His son as a baby to save this hurting world. I believe Kevin is alive and healthy in heaven and that someday I will be there with him for eternity.

And I absolutely believe in a little girl who is holding my hand and showing me every day there is still joy and hope and miracles and mystery to be found in this world. She believes in God and in herself and she is unwavering in her conviction that she can make a difference. She believes in possibilities, in wishes on stars and cancer-curing kits, and she wants me to, as well.

So because of her, in the midst of this Christmas season, in the midst of the hurt and grief and uncertainty, one prayer will be unceasing in my heart:

I believe.

Believe in what your heart is saying
Hear the melody that’s playing
There’s no time to waste
There’s so much to celebrate
Believe in what you feel inside
And give your dreams the wings to fly
You have everything you need
If you just believe

(Believe, Josh Groban)

The Song

About a month after Kevin and I started dating, he and his family took a vacation, a cruise to the Caribbean. I can’t say either of us was overjoyed at the thought of more than a week apart, but we emailed daily. Even though we had worked together for almost two years, and had cubicles less than six feet apart, there were still things we didn’t know about each other and this was a great chance to kind of catch up and fill in the blanks.

With Christmas coming, one of the questions I emailed him was this: “What’s your favorite Christmas song?” I laughed when I got his answer back, because, as I’d come to expect (and love), there was a Godfather connection. There’s a scene where Michael and Kay are shopping and Bing Crosby croons “Have Yourself A Merry Little Christmas” in the background. So, obviously, that became Kev’s favorite holiday song.

We started a tradition that year, our first Christmas together, buying a new Christmas CD. As a joke, I got him The Chipmunks Christmas album and, wouldn’t you know…his favorite song was on it. We added to our collection each year and, more often than not, that song showed up on the track list.

Have yourself a merry little Christmas,
Let your heart be light
From now on,
Our troubles will be out of sight

It’s funny how many Christmases we sang along to those lyrics, even in the middle of difficult circumstances. Right after we married, Kevin’s job was eliminated, so that Christmas was kind of hard. By the next year, he was working again, but infertility hounded us when we so desperately wanted to start a family. When our little Bear finally arrived, our hearts were light and we were thrilled and sure that everything was turning around. And it was good for a couple of years, until Kev was diagnosed with colon cancer.

We sang the song with special fervor that year, praying with every sweet note that the lyrics would come true:

Have yourself a merry little Christmas,
Make the Yuletide gay,
From now on,
Our troubles will be miles away.

Chemotherapy kept the troubles at bay, sometimes, but we could never get out from under cancer’s shadow. Some years, he had chemo during Christmas; others, we were fortunate to have a break. Either way, we squeezed every bit of joy from the season of miracles, watching our Bear marvel at the tree and the lights and the nativity and Santa, watching her sparkle every bit as brightly as the decorations. And sometimes, just for a bit, it did seem like our troubles were miles away.

Right after Halloween this year, she asked if we could play her Dora Christmas CD in the truck. I agreed, so we started rockin’ around the Christmas tree pretty early this year, but we needed it and it was good. As November wore on, I added more holiday music to the playlist. And that’s when it happened.

The song.

I heard the opening notes and I froze, hands on the steering wheel, driving down the street, drowning in grief as the music flowed over me. My lips moved, silently singing the words, and tears tracked down my face.

“What’s wrong, Mama?” Her concerned voice floated from the back seat. But I couldn’t answer because my mind was pulling out so many memories, all jumbled together, overwhelming me. So many Christmases, so many years singing this song. So many versions, but all of them beautiful and haunting, lovely to listen to as we drove the dark snowy streets searching for holiday lights.

Here we are, as in olden days
Happy golden days of yore
Faithful friends who are dear to us
Gather near to us once more

And now. Now he’s gone, but the song’s still here and the lyrics, always so melancholy, are too much this year. I want so badly for all our troubles to be miles away, to be gone – for Kevin to be back with us, gathered near to me, healthy and smiling, secretly loving that The Godfather got all entwined in our holiday.

And I can’t explain to Bear how I’m sad and happy at the same time. That grief doesn’t come and go, but it mixes itself up with the happy and the joy and the hope, and there’s no separating them, and that it’s impossibly possible to be crying and smiling and heartbroken and heart-filled at the same time. That the song will probably make me cry every single time this year, and that I can’t get away from it because it’s included on nearly every Christmas album we own, but that’s okay. I need to hear it, to sobbingly stumble through singing it, because it’s Daddy, little Bear, it’s your Daddy in those words and when I hear it, when I sing it, he’s here with me. It’s every beautiful, magical Christmas moment we shared and I need to feel the pain to feel the joy.

Through the years
We all will be together,
If the Fates allow
Hang a shining star upon the highest bough.
And have yourself a merry little Christmas now.

Postcards and Popsicles

The grey clouds have felt so heavy this week.

Leaden, overcast, gloomy.

I’m so tired of rain falling and leaves dying. Joy falling and hope dying.

Melancholy, glum, disconsolate.

The clouds press down, the grief presses down. It’s too much. Too much pressure and too much sadness. It’s hard to think and move and feel.

I’m trying to shake it off and get it together because how many times can I tell my beautiful Bear, “I’m sorry, Beary. I guess I got up on the wrong side of the bed this morning”? But my head aches and my heart aches and her skinny arms wrapped tightly around my neck in her Beary-bear hug help for a while, but the grief-sodden clouds are so heavy.

I feel like I need to take control of something, make something happen. The office is my target. I put together some cube shelving, and the work feels good. The screwdriver twisting in my hand, the shape of the shelves taking place. I needed this. I attack the scrapbooking table, which has become the dumping ground for scraps and memories and bills and cards. I sort and toss, ruthlessly throwing away bits and pieces and the piles are getting smaller and the trashcan is getting fuller and then two postcards stop me fast.

Postcards from Atlanta. One for me, one for the Bear. From the work trip Kevin took the week before his colonoscopy. The week before his diagnosis. The week before everything we knew about our life got turned inside out. I don’t know how I missed finding these before, in my frantic sweep for his handwriting in the weeks after he died. But I did, and they’re here, and my heart needed his words.

Baby Doll, I would rather be home with you and Bear. I miss you. Love, Kevin

Through my tears, I read Beary’s card – precious silly words from her Daddy – and his postscript makes me smile:

P.S. We will have a popsicle when I get home!

And now I’m crying and laughing and a little shaft of light is trying to gleam through the grief. Popsicles. Those two and their popsicles. He kept the freezer full of them and she was hooked from the moment she crawled up into his lap and begged a bite of the sticky sweet ice he was slurping on.

Two weeks after he returned from that Atlanta trip, he was in the hospital recovering from the surgery that removed a tennis ball-sized tumor and eighteen inches of his colon. I was traveling back and forth between home and the hospital, trying to monitor his care and spend time with our girl, who didn’t really understand why Mama and Daddy weren’t both home playing with her.

On the third day after his surgery, Kevin was allowed to have a popsicle. He was so happy with his frozen treat that, when I left the hospital to spend a few hours at home, he magnanimously said, “Give the Bear a popsicle for me.” So, when I got home, I swept my little curly-haired toddler up into a hug and told her, “Daddy said you could have a popsicle, Bear.” Her eyes lit up and she wriggled down from my arms, heading straight to the freezer door. I pulled out a popsicle for her and she took off to the playroom with it. A few minutes later, after she polished it off, she came back through the kitchen and with a mischievous grin, said, “Daddy said more popsicles for Bear, Mama!”

Postcards. Popsicles.

I clutch the cards to me.

Grateful, thankful, happy.

Joy rises through my teary laughter and some clouds lift and drift slowly and a tiny bit of bright hope blue sky peeks through the grief.