Tag Archives: bone marrow transplant

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.

 

 

 

 

 

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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.

 

 

 

 

 

 

 

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.