Tag Archives: cancer

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.

 

 

 

 

 

 

 

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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.

Slog On Through Cancer–Not Quite as Catchy, but More True

Lately, I’ve been angry at cancer. It seems weird to be this far out and be suddenly outraged, but that is the place that I find myself. For some reason, I’ve been thinking of how my life would be different in the present if cancer had never become the word around which our life was built.

I heard the voices in my head the instant I typed that sentence; those Christians who instantly say God should be; the optimists who say thinking about words other than cancer would be step one on my road to happiness. The sad fact of the matter is this: the word cancer has been at the center of my family’s life—emotionally, physically, and spiritually—since the day that Greg was diagnosed. Until you have been in this place, sat in this place, for year after year after year, you cannot in fact say what word should be where in a cancer patient or caregiver’s life.

Today, when I got to work, my eyes were screaming, betraying my exhaustion. My new co-teacher, a friend now for only six months, looked at me and said, “You know, you always are going through something big. You don’t have any of those problems that can be fixed by running to Lowe’s and getting a part for the water heater and “Poof!” it’s done.”

And that, I think, is it in a nutshell. There is nothing easy about this life after cancer, although we are so grateful for it.

We became lost briefly in the backroads of Macon on Saturday. It was Greg’s birthday, and we’d had a great day in Atlanta, a day spent touring Rhodes Hall and the Georgian Terrace, then enjoying a lazy lunch at Mary Mac’s. Now, we were looking for a pharmacy that sold dry mouth patches Greg’s oncologist had recommended. We’d been to pharmacy after pharmacy with no luck, and I was becoming frustrated. I looked at him and said, “I know one thing: I’d rather be doing this than bringing flowers to your grave.”

Abby, horrified, immediately said, “Mom! That’s not something you SAY!”

Greg turned to her and said, “I know exactly what she means.” He patted my hand.

That’s what cancer has been for us—a journey where we say things we shouldn’t say and feel things we shouldn’t feel, all while being aware of how close to the grave he came. No, Greg’s never marched in the Survivor Lap at Relay for Life. He’s never worn a ribbon. We don’t celebrate his transplant as a second birthday. We haven’t embraced cancer survivorhood as a lifestyle, but we can’t escape its mindset.

I struggle more with this than Greg does, especially on a day like today, where every other post is about standing up to cancer.  The posts are alternately defiant and optimistic; there are posts from people who have lost their children, their husbands, their first loves. We know so many people who have paid far greater a price than we.

For me at least, cancer is more than a slogan, ribbon, or picture. It’s our friends who are dead and their semi-orphaned children; it’s doctor bills waterfalling around us; it’s prayers in the dark. But most of all, it’s that man beside me, who is missing part of his bottom jaw, who has his donor’s blood running through his body, whose DNA now matches hers. February 4th is, to me, a day like any other: a day when I am awed by his strength, impressed by our daughters’ fortitude, and therefore impelled to continue.

I don’t know if we are still standing up to cancer, but we are slogging on.