Tag Archives: chemotherapy

Live it, Learn it

“You live it, you learn it.”

The nurse’s melodious, accented voice soothed our nervous minds. At least a little. Just three weeks ago, a surgeon had removed a tennis-ball sized tumor from Kevin’s colon, and now it was time for Phase 2. Chemotherapy.

We were scared.

We walked across the parking lot, his fingers entwined with mine in a painfully tight grasp. I think we both took a deep breath as the doors automatically slid open before us. Outside the door to our left, an understated sign named the office and listed all the doctors. I saw the name of the oncologist we’d been referred to, and pointed it to Kevin.

“This is the place,” I said.

His grip tightened.

We went in. He wrote his name on the patient sign-in sheet, and sat down beside me. Later, after many months, which turned into many years, of this routine, he’d joke around with the receptionists and empty the candy bowl of his favorite hard candy – peppermints to quell the nausea. But today – our first visit – we just sat quietly, holding hands, holding our breath.

A nurse came into the waiting area. She called off some names, Kevin’s among them. All of us first-timers. All of us nervous, wondering what to expect in this new chapter of our lives. I remember words, lots and lots of words. Various chemo drugs for different cancers. Side effects. Tests. I wrote some of them down to look up later. This new vocabulary was overwhelming, I didn’t know how to spell the things she was telling us, and I worried that I was already failing in my role as Kevin’s consigliere. How could I help him get through what came next, if I didn’t actually understand what came next?

We’d brought a bag with books to read during chemotherapy and to that bag I added handouts. So many handouts. So much literature. When we finally stumbled out of that meeting room to the exam room, waiting to meet the oncologist who would guide us for the next five years, we just sank into the chairs and stared at the floor. His nurse entered, then her beautiful voice filled the air and we exhaled. She told us not to worry about all the literature we’d been handed: “You live it, you learn it.”

You live it, you learn it.

For the next five years, we lived it. Six months of chemo here, nine months there. Some nice, well-earned, well-deserved breaks in between so we could enjoy a life with the Bear. We became a familiar fixture in the halls and when the social worker saw us, she’d call out, “It must be Friday!” As the Bear grew older, she came along, too. She liked to watch the nurses draw blood through Kevin’s port, always checking to make sure it was red. “It’s red, not green!” she’d cry out with excitement, eyes focused on the small tubes filling quickly. “That means Daddy’s not an alien!” She logged many hours in a chemo chair, wrapped in a warm blanket like her Daddy, watching Dora the Explorer on her portable DVD player, then filling her art pad with colorful sketches.

It sounds odd, I know, but that chemo room became a home to us. And the people there felt like family.

I found a stack of reports the other day, from those early days of chemotherapy. The words are clinical, sterile, listing lab reports and exam notes and chemo regimens that are seared into my memory.

We lived it. We learned it.

But among the office notes and status updates, I found bits of humanity. The name of the nurse who cheers on the Pittsburgh Steelers and could always be counted on to talk football with Kevin. The name of the technician who took his vitals and shared recipes with me. Dr. T’s nurse, always ready with her dry humor, waiting for Neil Diamond to whisk her away. The nurse who is an amazingly talented artist and who is convinced the Bear will be President some day. And the nurse who didn’t send me back to check-in that horrible December day when Kevin was delirious and dehydrated and couldn’t stand up; I pushed his wheelchair directly to her and said, “Please help him” and she did.

I looked at those reports and tears ran down my face. I felt a tug, a sadness, inside and it took me a second to realize: I was homesick. Homesick for the chemo room, for a place that had been part of our life for such a long time. I was homesick for our cancer family, the doctors and nurses and technicians who laughed with us, rejoiced with us over good CT scans, and cried with us when the prognosis got worse and worse. I was homesick for a place that, against all odds, is filled with hope and compassion and laughter.

You live it, you learn it.

She was right. We did. We learned so much in those years of living with cancer. We figured out all the words and initials and reports. I learned how to unhook his infusion pump and administer nausea meds.

But that wasn’t all.

And, as it turned out, that wasn’t even the most important.

No, the most important things we learned had little to do with cancer and everything to do with life. We learned how to joke about cancer, how to fill the moments with joy, how to live with strength and grace – and we learned it in the chemo room.

Thank you so much for those lessons, my friends. And keep an eye out for me and the Bear – the only way to cure homesickness is to go back home. We’ll be seeing you sometime soon…

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Facing August

“Is it a new year now, Mama? Even if it’s not January?”

She asked me the question as her pencil hovered over the open grammar book, ready to make the first mark on its pristine pages.

“Yep. Sure is. The new school year starts today,” I answered, and pointed to her workbook. “Back to prepositions for you, young lady.”

She giggled and got down to work, studying the words, then quickly darting her pencil across the page, identifying prepositional phrases “right and left” as she likes to say.

August has always felt like the beginning of a new year to me. Even more so than January first, after which comes January second and it feels the very same. But August? There’s a definite break there, from summer vacation one day to back to school the next. It feels different. The weather starts to change, getting hotter and hotter for a few weeks in our part of the world, before settling down to the autumn that I love so much.

Yes, August means a new year, a new beginning.

It’s more than back to school, though, or even the final approach to fall. For me, August was the beginning of the most wonderful parts of my life. On August 17, Kevin and I had our first date. That began our romance – the one that had slowly been growing from our two-year friendship. Just over a year later, in late August, we got married. That began the best ten years of my life. Being married to my best friend. Having someone who understood me, who loved me, who supported me in everything – whether he understood and agreed or not. Having been single for so long, I knew exactly what I finally had; I loved and appreciated everything he did for me.

I was down the other day: glum, despondent, sad, unhappy. The words themselves are so gloomy, but they described my feeling perfectly. Despite all the fresh start, new-beginningness of August, emotionally, it’s a hard month for me, a bittersweet month, because the man I love most in this life isn’t here to celebrate the anniversaries of our wonderful beginnings. Our first date day came and went, and Kevin wasn’t here to say, “I love you, Baby Doll! I’m glad my last first date was with you.” Our wedding anniversary is coming up – it would’ve been our eleventh – and Kevin’s not planning some weekend getaway with me and the Bear.

I sent Beary off for her silent reading time, then sagged into Kevin’s recliner, feeling more miserable than I had in months. As I sat there, trying to float, the words of an old Garth Brooks song kept streaming through my head:

If tomorrow never comes,
Will she know how much I love her?
Did I try in every way, to show her every day,
That she’s my only one?
And if my time on earth were through,
And she must face this world without me,
Is the love I gave her in the past
Gonna be enough to last
If tomorrow never comes?

Silent tears slid down my face as the words looped in my head. The hardest new beginning ever was the first morning I woke up without Kevin. I huddled in our bed, our daughter curled up beside me on his pillow , and he was gone, his time with us was over. I felt like the best part of my life was over, and I had no idea how to go on without him. Wracking sobs filled my lungs, shook my body. I hated the tomorrow that had come. I didn’t want that tomorrow. I wanted the tomorrow where we woke up and caught a plane to Mexico for our honeymoon. I wanted the tomorrow where we finally got to take our baby girl home from the hospital. I wanted the tomorrow after his colonoscopy, when we thought we’d go home and put the cancer nightmare behind us. I wanted all the tomorrows that we’d dreamed of spending together.

I wanted what I couldn’t have.

But I had what I needed. He’d made sure of that. It just took me a while to realize it, and gratefully embrace it.

He’d given me enough love in ten years to overflow my life. For the rest of my life. For all the tomorows that will come. In all the Augusts that will come.

Did I try in every way, to show her every day, that she’s my only one?

He won’t call me from work in the afternoon anymore, to ask how my day is going. But when the clock chimes two, if I stop and listen, in my mind I can hear the phone ring, and his voice: “Hey, Baby Doll, what’s going on?”

Showing me his love.

I won’t hear the garage door creak up, or the kitchen door squeak open and slam shut. I won’t hear his footsteps cross the floor behind me as he nuzzled in for a kiss. But if I stop at five o’clock and close my eyes, I can still feel his arms wrapped around my waist.

Showing me his love.

I won’t kneel on the floor beside our bed, my hands trembling as I unhooked his portable infusion pump. But if I pause while making the bed, and lean in, I can hear him mutter groggily, “I’m okay, Baby Doll. I’m gonna be okay.” Years of chemotherapy, trying to beat the cancer, buy more time, more tomorrows.

Showing me his love.

If tomorrow never comes, will she know how much I love her?

I do. I know how very much he loved me, how very happy our life was, and how very much I still love him.

Facing August isn’t easy. I can only do it because Kevin filled my life with all the love I’ll need to get through all the new beginnings and new years and tomorrows without him. He was always showing me the greatest love.

Thank you, Kevster, I thought. It’s going to be enough.

A Scootch Too Good

I was surprised when I heard her voice pipe up from the back seat. She usually likes to sit quietly and watch the scenery pass by while we drive. She’s just like Kev and me – we once drove nearly three hours without talking, just content to be in the car with each other.

So when she spoke up, I listened.

And when I heard her words, I nodded my head and pressed my lips together to keep the tears from spilling out.

“Mama, I think life is just a scootch too good, sometimes. It’s hard when I’m having so much fun and then it’s over and I just want to keep having that great time again and again.”

Yeah, baby girl. I know.

I miss that scootch so much. That little bit of extra that made everything about life pretty wonderful. I miss the bad puns and the never-ending Bubba joke and the constant pausing of the TiVo so he could quiz me about where we’d seen a particular actor before. I miss the wearied kiss on my forehead after I knelt by the bedside and unhooked his infusion pump as carefully as I could. I miss the pat on my hip each night as he drifted to sleep, needing to make sure I was there in bed beside him. I miss his nose comically sniffing the air with goofy anticipation as garlic and tomato wafted through the house and deep dish pizza bubbled in the oven. I miss his silly voices reading Sandra Boynton books to the Bear each night when “all the hippos go BESERK!” I miss scrambling to the car, racing to chemo and the whole time he’s shrugging his shoulders and laughing, “They can’t start without me, Baby Doll.” I miss tangling our feet together on the recliner’s footrest in the chemo room, the drip-drip-drip of the drugs keeping time with our hearts: “I love you, I love you, I love you.”

Life with Kevin – even life with cancer, because at least he was still here with me – it was just a scootch too good. I waited thirty-two years for that life, and he did, too, and we crammed as much love and happy and fun into ten years as we possibly could.

It was good.

A scootch too good.

She’s right, I think, as I make the left turn and head toward home, my face wet with memories.

It’s hard when life is everything you ever wanted. And you want it to go on and on and on. Forever.

But then it’s over.

And what’s left in my life is still good, and I’ve got my girl bringing me joy and her quirky insightful wisdom to prove it, but…it’s a scootch less than what I had.

I miss him so much.

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.

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.