Category Archives: bone marrow transplant

Carrying Your Big Wet Dog (Thoughts on Cancer Survivorship)

 

 

June 2018

I am in a day-long staff development, never a good place for me. I have a hard time sitting still, being quiet, being professionally “appropriate.” I interject, grow restless, stand in the corner and stretch. I admire the way other teachers can sit and listen and contain their restless minds–how the elementary teachers listen patiently while the speaker discusses high school standards.

I can’t sit like that. I organize my Google drive, catch up on Poem-a-Day reading, and still hear every word. I try to self-regulate. I watch the clock, limiting my comments to one per half hour.

(Years ago, after attending a monthly series of regional staff meetings together, a teacher from another county stopped me as we were leaving. “You know,” she said, her hand on  my shoulder, “I have never in my life seen someone who looked like they weren’t paying attention at all who heard every word.“)

I do hear every word. I just can’t idly sit with my wandering mind. It might go to yesterday afternoon, when, in the back of a desk drawer, I found the inky footprint of my stillborn granddaughter. It might go to the recent death of my co-worker. The death of my best friend. The tests my husband Greg is about to have–since, fresh off of cancer #3, he couldn’t see the other day. My brain may scream, “HE COULDN’T FOCUS HIS EYES.”

I think it is better for everyone if I quietly read a poem 


During the meeting, I messaged a co-worker who was sitting in a waiting room in St. Jude’s Children’s Research Hospital where his young daughter, an ATRT survivor, was having her quarterly brain scans. He texted that she was in recovery. I replied, “I’m sorry. Every time. I’m so sorry.”

What I wanted to say, what suddenly sprang from my heart, was, “I’m so sorry you have to carry this wet dog around.”

I didn’t say that, of course. Too odd, even for me. Carrying a wet dog? 


September 2018

I’ve sat with that analogy all summer–long enough that he is today, again, at St. Jude’s awaiting his daughter’s scans. No one I’ve run it by gets it. They don’t understand when I look at them and say, “Surviving cancer is like carrying around a big wet dog.”

But . . . picture your dog lost in the woods. He has been there overnight, and you have been searching desperately, wandering down spider-webbed trails, your good shoes getting ruined by the muddy muck near the river. And, finally, there he is–you see him on the shore’s edge–he is soaked, the water running off his matted fur in rivulets. His paw is badly hurt, but you are so happy to see him that you don’t care. You elatedly scoop him up and begin to carry him home. He smells. He is sticky and panting and soaked. Your arms ache. The walk is long–through dry creek beds and briars; you dodge broken vines and stumble over tree roots. Your dog is whining–he’s tired and hungry and hurting–but you happily carry him. You whisper into the warmth of his ear: I will take you home, and all will be well.

You will rest together. He will be in his bed. You will be in yours.40862229_900181213506411_5640981768501723136_n


That’s the goal in Cancer Land. While well-meaning nurses may talk about survival in terms of children’s high school graduations and wedding days, the real goal is only this: everyone back in their proper place. Children in their beds, parents in theirs, under one roof.

When cancer causes you to miss that, even briefly, you realize that life’s treasure is simple: it is presence.

The ordered dinner table with every chair full–Dad, Mom, and offspring. Quiet chatter about boring days. Bickering about the last piece of chicken or who has to bathe first.

During a thirty-one day hospitalization, it’s all anyone craves: presence.


In understanding the treasure of presence, you truly comprehend the cost of loss.

The same hospital stay that teaches you to treasure a family dinner, a carpool ride, or a Monopoly game also allows you to survey the spectacle of death and sorrow. You are there when a grade-schooler gives a eulogy for his newly-dead father. When a groom diagnosed weeks after the wedding dies days before anniversary #1. When Val, who is young and beautiful and kind, dies anyway, and the nurses leave her name tag up by her empty room for days–until, when you can’t look at it anymore, you take it down.

(You still carry it in your wallet seventeen years later. You couldn’t throw it away in 2001. You are no closer to being able to now.)

If you are in the hospital long enough, you watch dozens of people die, sometimes two or three a day.

One weekend, five people die. Children die.

You still remember the wails.


319704_10151036722415980_65686374_nIt is a miracle that anyone escapes–that anyone walks away from their front row seats of sorrow and horror–and so much more of a miracle when it is you.

Miraculous to stand, to find some footing, to gather yourself and make your way past the travailing parents, their only daughter dead. To walk past the orphaned children, the people wailing, “All is lost!” To look at them, recognizing that, for them, all is truly, truly lost–yet you yourself are able to continue to walk.

To exit that place, to walk away from the helpless and leave them unhelped–it is, in some ways, the greatest sorrow of your life.

But you don’t care what it is you have to carry–how damaged or mangled or heavy your load–because you are walking flint-faced past scores of the barren and empty-armed.

Your arms are laden, and soon, you will rest.

 

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Cancer Survivors, Please Take Note:

You are allowed to want:

A clean table.

Fresh sheets.

A few things

(modest household items)

from Pier One

On sale. With coupon.

 

(You are also allowed,

in a lifetime,

One stainless steel trashcan

and two Lowes clearance appliances.)

 

You can want, desperately,

your aunt’s second-hand sofa

with its tufted pillows.

And Lindt Christmas peppermint truffles

at the after-New-Years Walgreens price.

 

Permission granted! Dance with true joy

when your brother gives you

a seventeen-year-old fishing truck

(your only vehicle with A/C).

 

(Even now, there are tears: you possess A/C.)

 

Don’t dare want

the smiling husband at the amphitheater concert.

Forget the gurgling grandchild, alive in your arms.

(We understood your wanting her last year,

but, really?, this year, too?)

 

Accept your fate. Shut up. Sit down.

 

Even after sixteen years–

character building via financial destruction,

$208,000 in medical bills,

a new Nissan’s worth of eyedrops.

 

You cannot desire relief.

 

It is not his fault. Not your fault.

You can’t blame anyone.

 

Stop all that tacky wanting.

 

Like what you have.

Take what you get.

 

And just shut up about the car.

 

There’s no driving away from this.

 

 

 

 

 

 

We Should Have Said More

IMG_3726When we were in Seattle in the spring of 2001 for my husband’s bone marrow transplant, we allowed our six-year old daughter to fly home to Georgia for her last week of first grade. (This was pre-9/11; also, it was a non-stop flight.) Before April boarded the plane, I was a sobbing, hysterical mess–Greg was faring very poorly at the time; he had pneumonia, and he was in strict isolation. It was quite possible that April had seen her father for the last time, and the thought of her across the country, alone, as he died, was too much for me. My good-bye to her was an awful one.

The stewardess escorted April, clutching her Dora the Explorer doll, away; she was the last to board the plane, save one: an intimidating six-foot four handcuffed prisoner flanked by two FBI agents boarded immediately after she did.

(People who know me are now thinking: And that’s when Rachel got her child off the plane.)

I got April off the plane. But not because of the prisoner. I told the steward that I had botched the good-bye, that her father was potentially dying, and that my daughter didn’t need her last memory of her strong, steadfast father to be tainted by my blithering. I promised to do better–and be quick.

April emerged from the jetway. I apologized for crying so much. I told her, “I don’t think your daddy is going to die. He could, and that makes me sad. But I don’t think he will.” She nodded gravely, her dark brown eyes serious.

(Then, in a chipper tone, I asked, “So, are you anywhere near a rich, tall man in handcuffs???”)

From the airport, I immediately returned to Greg’s hospital room, where I told him of my first failure and subsequent second attempt. “I don’t think I could tell the girls that you might die,” he said simply. “I just couldn’t.”

Before 2001, perhaps I would have felt that way–but that year, we watched over twenty people die, among them small, beautiful children. Daily, we witnessed the rawest anguish and pain. Families had travelled cross-country or around the world in desperate hopes of saving their dearest loved ones, and their loss and the price were too much to bear. Heartbreak was a constant neighbor, and death was just a plain reality.

Yesterday, death and heartbreak found us in Georgia. A high school classmate died of complications of cancer. She was 47 and much-loved. Friends were screaming on the phone to me. “What?How can this be? I didn’t know she was ill!” “Is this a sick joke? You have got to be kidding me!” And over and over, “Her poor momma.” The shock combined with an obvious and unspoken, “I wish I had known.”

There was only one Facebook post of hers about her illness. The rest of her posts stayed true to her loves: family, friends, and pets. Casual friends hundreds of miles away had no real way to help her because we had no real way to know–so the shock of her loss is tinged with the regret that we didn’t take the time we would have to make her laugh, share some memories, and perhaps even make amends. We missed our chance to console. To remember. To honor.

Several years ago, another friend made a similar choice. One of the most head-strong women I’ve ever known, she too was ill, also with cancer. She wanted no one to know. There was to be no fuss, no one taking long trips to sit bedside and make small talk–she just wanted her family and present-day friends. The news of her death was heart-breaking, as was the knowledge that we’d missed our goodbye.

People travelled hundreds of miles to her funeral. Like us, some hadn’t seen her in thirteen years–but we laughed at the stories told from the pulpit. Yes, she did take her friends’ toddlers to Disney movies so that their weary parents could sleep. Yes, she was a germaphobe. Yes, the love of God did shine through her brightly. Eulogies and testimonies of her love for others abounded. And none of us could be angry that she chose to keep her illness private–because it was true to her character that she did so, certainly, out of humility and love.

As I sit here, shocked by another too-soon death, I look back over our messages about pets and husbands. Mundane, but joyful. And I think about what I might have added, had I known: “I always admired your smile. You were always so kind to everyone, no matter the circumstances. It is obvious that everyone in your adopted hometown adores you. I wish you peace.”

I would have done and said more.

And so, here it is: all we can do is say more. It may be uncomfortable at first, but we can say things like, “I appreciate you so much.” “Thank you for standing there with me.” “I can always count on you to be by my side.” “You make me laugh when nothing is funny.” “You were like a mother to me.” “When my day was lousy, you were always there.” “I could not have survived this without you.” “You can always make me feel better.”  “My life is better because of you.””I love you.”

Our friends, our true friends, can hear it–the simple and pleasant truth that they matter. They’ve made the journey survivable for us.

Then, one day, should their own journeys become unsurvivable, they will know that their love mattered, their friendship was valued, and they will be forever missed.

And great will be the peace.

 

 

 

 

 

The Gleam of the Now

10575320_1675980529318413_6993199641154948756_oToday, I awoke to a Facebook post. It said simply, “It’s a nice day for a white wedding,” and my heart just broke. The bride, Shelby, is young, beautiful, tough–and motherless.

Like most of the children of the Seattle bone marrow transplant patients, her life has been full of continued medical crises, financial hardship, and forced independence. The kids who ran amok in Seattle Cancer Care Alliance’s Pete Gross House in 2001 are between 16 and 24 now; most are partially orphaned, and all are fairly unjaded stoics. They left fairy tales and hopes of happy endings behind before they were out of toddlerhood. They spent hours in hospital waiting rooms, eating stale Cheetos and sipping warm Sprite while their pincushion parents, dragging bags of TPN, stared at Lake Union and mustered half-hearted hopes for better days.

For cancer patients who are also parents of young children, the goal most often mentioned is their child’s wedding day. The walk down the aisle is the holy grail, especially if they have daughters, as we do. Nurses say things like, “You are going to walk your daughter down the aisle. You’ll see” because when you are living from one misery-filled moment to the next, you can’t even see a day when food will taste right again. A happy wedding day fifteen years hence is an almost impotent goal when your crystal ball currently contains only the day’s methotrexate.  So it is the nurses who speak of future years, while the patients content themselves to survive the days.

And now, 906 miles away, Tammy’s daughter is getting married. The day the nurses conjured is now concrete: March 11, 2016–and her dad, who was on the bone marrow transplant ward with my husband, is (as predicted) fine. But his caregiver, his wife–the one who fundraised and moved the family cross country, and entertained us all from the instant she got there–succumbed herself. To cancer.

Words like ironic and cruel and phrases like twist of fate don’t do justice to such heartache, to fifteen years spent watching first one parent, then another, fight for their lives. Yes, these children gain strength and fortitude, that’s true–but they also are always waiting for the other shoe to drop. For the PET scan to find a nodule, for the biopsy to be positive, for the graft versus host to flare. They walk the cancer tightrope right behind their wary parents–and when a parent passes away, they walk again, alone. Inching forward, toes curled, lips pursed, chins set, continuing their journey.

Fortunately, children learn a lot while curled up in a hospital bed beside a sick parent. The power of a smile. The fun in a quiet game of cards. The pleasure of a Veggie Tales video shown for the fiftieth time. They learn to lie still and hold Daddy’s hand and look at the trees in the arboretum. They learn to hold the Now and move forward some. They learn that time is both slow and fast: they live through both the longest and shortest of days.

I don’t know much about Shelby’s wedding–who wore what, who toasted whom, what hors d’oeuvres were served–but I do know this: the sparkle in her eyes testifies to the happiness in her heart and the joy of the day. Surely it was bittersweet. There has been so much lost. But in her eyes, I can see the gleam of the Now, and it is beautiful.

More than most, Shelby knows that things scar and fade, batter and become. She’s seen much, but her eyes in the photo dance.

Her mother would be so proud.

 

 

 

 

 

 

 

On the Waving of the Checkered Flag

“We were laughing and living, drinking and wishing, /And thinking as that checkered flag was waving, Sure would like to stay in Talladega.” –Eric Church, Talladega

It was a late summer evening, and although it was technically too hot to, I had cooked. My younger daughter, Abby, liked the anchor of a family meal, and my older daughter April’s boyfriend liked my cooking. Long dinners were our Thing for those last several weeks before September made us into the school-year flotsam and jetsam that we so often became.
Our family dinners were a marvel to me. My alcoholic, bipolar mother had seldom cooked. Food–whether it was greasy, lukewarm roast beef or the more standard Burger King Whopper Jr.—was swallowed quickly and our back-to-bedroom escapes were made. Dad, who dubbed himself “Fate’s Whipping Boy,” ate late and alone at the Formica-topped bar in the kitchen. Whichever child chose to emerge and join him would be treated to sardonic stories of his gray day as they swiveled on the sticky faux-leather bar stools. There was nothing warm and Ingalls-y about our mealtime; no passed potatoes, no humorous stories, and very little daily minutiae was shared with nodding and clucking adults.
I exulted in the fact that my daughters expected family dinners. Our table was the first piece of furniture we bought as newlyweds; the chairs were given one by one as Christmas gifts by relatives. The twenty-four year-old chairs, saggy, scuffed, and stained, were no longer prizes; the tabletop, faded and worn from the thousands of meals we’d enjoyed, was no longer fit for the Haverty’s showroom. My now-adult brothers, on separate occasions, each reverently stroked the tabletop and said, “You can almost see the stories that were told here,” in recognition of my treasure.
On Sunday nights, I’d holler, “Who wants what next week?” and each girl knew she could count on one favorite food—Chicken Parmesan, gluten-free pizza, chocolate-chip pancakes—at the end of each weekday. April’s boyfriend, who was hundreds of miles from his mother’s home cooking, occasionally joined in, politely requesting fried okra or red velvet cake. He would smuggle the leftover slices home past his thieving roommates, who especially favored the walnut cream cheese frosting.
The days that ended at the table were days that were bookended by laughter and long talks. We would talk about Marxism, basketball, and Eric Church—one night, as if to show just how weird their mother was, April and Abby allowed me to explain why “Talladega” was the best song ever written, discussing it line by line. Everyone laughed at my sentimental tears over “the summer before the real world started.”

The girls would tell stories of broken arms and field trips, of Camp Winshape and hikes and horseback rides. I’d clear the table as they prattled on, Abby enjoying her traditional York Peppermint Patties and milk while Greg snuck a little ice cream.
So it was this customary evening. We had eaten well and laughed hard, remembering how when we’d asked young April her dolls’ names, she would cackle, “Rubbish and Trash.” We’d recounted her cross-country airplane trip alone at age six where she’d poured Sprite–quite deliberately—down the pants of her middle-aged seatmate, a woman who’d called her a chicken. Dinner was endless, and as we sat there afterwards, I heard a clear voice within me say, “You will never have this again.

I froze. I knew the voice.

In 2001, when I’d heard Greg was in the hospital after a routine doctor’s appointment revealed iffy blood test results, as I desperately said, “Not leukemia” to myself over and over, I heard the voice say, “It is leukemia, but I will perform a miracle of peace.” And these words proved true.
To hear that voice so clearly fourteen years later, clearly and certainly bringing sad news from nowhere –I can’t emphasize enough the nowhere—shook me. I looked at each of the four of them, chortling at the latest story; I took in the dishes and the lighting and the way their smiles shone. They were all so happy. There was joy in the room, hilarity even. It had been a good meal, a great time, and, evidently, the last one, ever.

As I sat there, forty-five, haggard, prematurely gray, having endured much, I can clearly recall a desperate grasping within me, an urge to fight, to say no. I wanted to resist whatever torture was ahead, and I wanted to begin immediately. Post haste. To stand and fight and claim good things–for surely, having lost so much, we deserve to enjoy good suppers. How could that be too much to ask? For a minute, I was like my former students, who now as young new mothers, are trying to perfectly order their children’s and families’ worlds. I felt myself reverting to a time when I naively thought that I could change and save things.
But I was only there a moment.
I acknowledged the voice. I told it, “Well, then, I’m going to enjoy tonight.” I refilled their glasses, grabbed dessert, and we sat long and laughed much. So much. I watched their faces, held their hands, marveled at the blessings they were.

It was a truly beautiful night: we were so rich.

There is no explaining how quickly everything has changed. A break up, an unplanned rebound pregnancy; one move, then another. We were five, and we are now three. And supper at the table is more than this remnant can bear. My husband dines on Frosted Flakes in our bedroom, seeking his solace in Barney, Andy, and Aunt Bea; my younger daughter nibbles frozen chicken nuggets while copying AP biology notes; I eat the pork loin that I made, but no one wanted, as I play online Scrabble with Charles, a stranger in Maryland. My elder daughter is living in a maternity home two hours away; her ex-boyfriend is reduced to terse texts about items I need to mail back to him. There is nothing left of the Ingalls family here.

In the kitchen cabinet, there remain several small bottles of red food coloring. I used to buy Kroger’s entire stock since in a small town, hoarding can sometimes become a necessity. I doubt, however, that I will make red velvet cakes again. They belong in a time that has left me, with people who have as well.
I only had an hour to say my farewell—an hour after dinner in which I was allowed to look, alone, at all that God had given me, to hold it close, to see its beauty, and to bid it goodbye. At the time, I didn’t know whether we would face a car wreck, a third cancer, or an unexpected death. I knew only that the pain was coming.
I thank God that He allowed me one last look at all that joy. For what joy it was.

(What Joy!
It Was.)

Present Enough

Last night, after a hectic weekend decorating for and overseeing Homecoming, Greg and I came home late from the school’s Christmas party and collapsed on the sofa. He was reading, and I was just staring at the Christmas tree, which is fake and spins—something I find splendid. Greg was insistent, “Please read and settle down,” and I said, “I am settling down. I just want to sit here and think about how happy I have been this week and a half in our marriage.” He said, “Week and a half? We have been married five hundred and twenty [pause for mental math] . . . almost a thousand weeks, not a week and a half.” To which I replied, “Yes, and I have been very happy this week and a half.” He looked at me like I was insane, and then, he thought about it. He said, “Let’s see: no miscarriages, no terminal illnesses, no family members dying recently, no denial of our constitutional rights [ala the fostering fiasco], no forced moves. Yep, it’s been a good week and a half.”

And I was wondering what it is about me that can revel in a good week and a half of marriage, celebrating it for the treasure it is; unfortunately, I think it may also be the same thing that can cause me to go into a death spiral during the bad weeks and a half, and that is the revelation that this is, like it or not, as good as it gets. It is what it is. Type your own cliché here, if need be, because there are plenty; my Grandma’s favorite was borrowed from her cook, Ellen: “That’s all in it.” Grandma would laughingly tell me so when I complained about sleepless nights or told horror stories of Toddlers Gone Wild in Cracker Barrel. And she was right—it’s all there, the good and the bad, the happy and horrific.

During our 18 years, I have memories of things that I would rather erase; some are specific: the tear-filled mornings getting ready for work in the time after April was returned to her birth family, lost to us, we thought, forever; the two babies we lost who would be teenagers now, and who are on some days obviously, painfully missing; the bone marrow biopsy in medically-primitive Georgia, a horror Greg doesn’t like to recall even now; our unplanned return to Waycross; the failed adoption of a baby girl whom we brought home from the hospital at birth, then lost to last minute legal wrangling. Others are more typical—the humdrum minutiae of everyday marriages: failed attempts to ask politely for everyone to push your chair in, how hard can it be?; the daily taking for granted of one another—he will be there for me, I know, so I do not thank him when he is. This is “in it” as Grandma would say: we all fall short; we will all have things that we regret doing, saying, or going through.

But there are other times that we will never regret sharing, times that no one but we will ever understand: when April came back (forever!) from her relatives New York, and she ran through the house, shrieking her glee; when our returning plane touched down from Seattle, Washington, and we were home again; when Abby was and is here and healthy and well; and, finally, when we read the New Yorker cartoon about the chickens with self-respect and laughed forever. We know, having lost much, what we have. Appreciation of the minutiae: these times of bored predictability—of Saturday routines involving cleaning garages rather than sitting in hospitals—that’s “in it” as well.

And so, I think, the insanity of being grateful for ten good days of marriage in a row is, all things considered, a positive: it says that I know these days for what they are—part of the ebb and the flow, the bitter and the sweet. A bad week does not a marriage ruin, nor a good week a marriage make—but having someone with you who, having endured the horrific, will now sit with you and enjoy the happy–even in the face of horrors to come–and just watch that Christmas tree spin—well, sometimes, that may just be present enough.