Category Archives: Nurses

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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The Worst, Best Day

12992368_10209707986039601_374484923_nTuesday evening, the baby was not kicking. She had not kicked in about nine hours, and April was growing concerned. She tried a warm bath, a sugary drink, a cold drink, a Mountain Dew, walking, sitting still, lying down, and playing music. We called her obstetrician’s office in Savannah; the answering service attendant and I strongly disagreed over whether she needed to know precisely what medicine April took at age six. (“I cannot tell you that right now.”/”Let me just write down that you refused.”/”Please make sure you also write down that we are two hours away and the baby is not moving.”) My truculence was punished by my not getting to talk to the doctor, though the secretary did condescend to say, “He said you can go to the Waycross ER.”

The Waycross ER it was.

Like most ERs, our ER is sometimes a place where you have to consider pinching  your children to make sure they wail louder than the drug seekers. Last night, when we walked through the door, the lobby was calm, but they were training a sweet new intake clerk. If you are a waitress in training, spill a coke on me; I won’t say a word. A slow, new cashier? Count that money three times–I’ll wait. Kind and fumbly ER typist? No. I can’t.

I used my Teacher Voice to holler to a triage nurse: “How long’s it going to take to get this baby’s heartbeat seen about?” She asked if April was over twenty weeks, and then gave us the “Get Out of the Waiting Room Free” card: pregnant women over twenty weeks get to go straight to the third floor.

Three nurses greeted us quickly; it was a slow night. One patient had just given birth and was immediately moved to another wing: we then had the entire labor and delivery wing to ourselves. They set about trying to hear Stephanie Grace’s heartbeat using a fetal monitor; it seemed to be there, but faint. They weren’t sure, and wanted to do a sonogram–an expense we wanted to avoid if possible. But sitting there together on that hospital bed, not really knowing whether that was the baby’s heartbeat or an echo of April’s, we decided that one more scan might be best.

I have never seen a stiller sonogram.

I gripped April’s arm too tightly, willing the baby to wake. Once again, I was stunned by my inability to see anything baby about the sonogram. No heartbeat, no feet, no head, no arms. Just spine. It was March 16th all over again–but worse. I looked at the tech and the nurses, trying to sense weakness: who would tell us now? Did we really have to wait an hour and a half for a radiologist in Minnesota or Maine to download and read what looked instantly obvious? They formed a tight huddle, but as April went into the restroom, I pounced, hissing their names and making thumbs up and thumbs down motions with raised eyebrows. Demanding. Now.

I honor their professionalism. None cracked. But in my eighteen years teaching teens, I have learned to read split-second reactions. And although I wasn’t told, although no one’s face changed an iota, I knew.

April did, too. She swaddled herself in blankets and said, “I just don’t feel good about this. I don’t think I saw a heartbeat on the sonogram. Nothing moved.” We sat in silence, and time passed. The nurses and the tech once again entered in a huddle–they took turns speaking, so that no one person broke our hearts. There was no heartbeat.

At 46, my rage, I know is impotent. It will not pay the bills, fix the car, cure the cancer, or start my grandchild’s heart. It’s useless, really, to argue about what we are dealt--but I had continually prayed, hoped, and believed for Stephanie Grace to have a chance to enjoy a few hours on earth. To  ask April to gracefully bear this, too, seemed a most brutal injustice. 

April’s tears were hard and angry, but brief–because, as she points out, “I was given medicine.” As she dozed, I sat wondering about the unfolding day–we’d envisioned Stephanie Grace’s birthday as a summer day in a Savannah hospital with a top-notch neonatal unit. To be in small-town Waycross on a spring work day was unexpected. I knew the day would be long, but I hoped we would be able to proceed with what April wanted–very few visitors, a tight circle of love around sweet Stephanie Grace.

The first sign that the day held possibility: a message brightened my phone about 7:00 AM. “I’m working in the OB today if you need me. I love you.” A former student, Ursy, was checking in. Her firstborn also died from severe birth defects, and she and April had been planning to have lunch one day and discuss what April could expect. A room-brightener by nature, she cheered us greatly. She told us the story of her daughter’s birth; the girls discussed memorial tattoos–April wanted Stephanie Grace’s footprints and the green anencephaly ribbon. Ursy kept telling April, “Get lots of pictures. Lots and lots of pictures!”  

Pictures posed a problem: early that morning, we’d learned that the photographer we planned to use was unavailable on such short notice; others were similarly booked or not up to the task–and who could blame them, with so much unknown? It was anguishing–it was so important to us all that this day be preserved. We’d been comforted by others’ beautiful baby pictures, and April wanted her own. I kept Facebooking photographers, and finally texted another former student, “Help me find someone!” Within thirty minutes, a sweet-voiced stranger named Stacey was reassuring me, “I’m on my way,” and another piece of our day fell into place.

In all of our time enduring medical crises and hospitalizations, I have learned two things: the first is that the right person will ALWAYS show up. I was mildly curious who the day’s right person would be. For us, the Right Person is never a best friend or a favorite relative because second truth is simply emotional distance is ideal in a hospital visitor during the first throes of crisis. (Alternately: helpful acquaintances can be better than friends, who are often better than family.) This second truth seems cold, but it’s a truth we have lived. It is easy to lose yourself to sorrow when a much-loved aunt shows up, especially if her emotions are also running high. A casual friend or coworker can be a more appropriate support; they recognize your sadness,but their presence encourages equilibrium, something a 40-hour stretch without sleep can require.

At 9:35, a Facebook message came through: “I’m wrapping up things here at the church so I can be free for you the rest of the day.” And, just like that, I knew who the Lord had planned to be the day’s right person: Beth, the mother of four of my former students. I’d seen her at a restaurant a few weeks before and told her the news; she invited April to lunch and took her shopping for the baby. And she planned to attend Stephanie Grace’s sad, sweet birthday.

April dozed as the baby’s father slept in a recliner, having come straight from the night-shift. I quietly sent texts to family members, including Abby, who reported that Greg was still asleep after his midnight run to check on us in the ER. I advised her to wake him and arrive by 11:00.

By 11:17, we’d assembled–a small, slightly frightened crew. The nurses had cautioned that the baby, having died, may be discolored or disfigured; they explained privately to me that, for babies like Stephanie Grace, if the baby’s defect was thought too gruesome for the mother to see, the nurses would whisk the child out of the room and “attempt to make the baby presentable, or wrap her so that the mother can at least see the hands and feet.” We all were silently afraid of what we might see, of what the next hours held.

Abby, Beth, and Stacey waited together down the hall as April slept. We’d been told that the mothers of stillborn, preterm babies often slept, then woke abruptly and–whoosh!–gave birth before the nurse call button could even be pushed. As April slept, my prayers were frantic. My mind was frantic. I could not deliver my granddaughter, could not disentangle her from the sheets. Surely that would not be required of me.

(Author’s note: Brown text below may be difficult to read, but no harder than it was for us to live.)

And then it was time. April awoke, and the just-in-time doctor delivered sweet Stephanie Grace at 12:13–and I was overtaken.  Ninety seconds before, I doubted my ability to look at my granddaughter,  but I was now thunderstruck, mesmerized. The nurses were hastening her from the room, and I whipped behind them, literally, completely unable to take my eyes from this perfectly imperfect, tiny child.

“Don’t you want to stay and encourage April?” a sweet nurse suggested, for the defect was horrific. “No, I’m not leaving her side,” I replied, my eyes still fixed on her. Two truths: It was so awful. And she was so beautiful. They took Stephanie Grace to a nearby room and laid her on an empty hospital bed. As she lay on the blue plastic chuck, her perfect mouth open and her tiny hands clasped, I saw what will be the horror of my life–a secret the sonogram had not revealed: the baby was missing her right leg below the knee. My brain screamed and screamed and screamed at God: ALL April had come to want was a footprint tattoo, and she couldn’t even have THAT??? Two feet was too much to ask for? We were to be denied even that???

And then, that quickly, the rage was gone–I knew we would have loved her, leg or no leg. We would have played soccer, gone to therapy, visited specialists–the rage was gone and the wishing returned. I so desperately wanted a well, one-legged soccer player romping through our house. I wanted the hassle of driving to the best pediatric orthopedists.

My breath was gone; I was full of wanting. I was only all the wanting in the world. 

I started taking pictures of the baby, ungroomed, imperfect, untouched. I turned my camera into a sanctuary forever–full of true, if gruesome beauty. She had one leg, a clubbed hand, a deformed arm, and no skull–but also long fingers, a sweet face, a tiny nose, and decidedly un-toadlike eyes (how wrong the doctor had been!)–all of her, unswaddled. Pristine.

Greg came in search of me, and after begging him not to leave the baby for a second, I went to April. She was proud–radiant with pride. I went to get the photographer and Abby–who went immediately to the baby, and then to tell her sister of Stephanie Grace’s beauty. To soothe her as only a sibling can, to say, you will be able to hold and love this baby because she so very far from frightening.

April stuck her hand out, silently demanding my iPhone. She saw the baby’s hands and relaxed some. The baby’s face, her small nose. April relaxed futher, and a flick of her wrist got her more quickly to the other pictures. She brought the iPhone to her face, peering and scrutinizing. I could almost hear her saying to herself, “That’s not too bad.”

And suddenly, holding her baby became possible for her.

The nurses dressed Stephanie Grace in a tiny gown and covered her head in two caps; they wrapped her in a pink lace-trimmed blanket hand-sewn by an 83 year-old woman touched by April’s story. Stephanie Grace, snug and beautiful, was taken down the hall to her mother’s arms.

The only word: transformation. The truth of that word, of every word here–all of the Unknown that had stalked and savaged us for weeks was gone. Removed. East and West became real–the Unknown was so far away and so absurd. The room was reverent–this sounds like hyperbole and romance and overkill, but oh, I assure you, it is so true–the room was far and away and time was frozen and sound was still and there was just that baby, that sweet baby, and all of these people who loved her. 

It was so awful, so beautiful. So terrible, so holy. 

She was our shared treasure, everyone holding her and studying her, marveling at her pin-prick fingernails, and April adoring her tiny ears. Her petite mouth was a mirror of April’s. We held her hands, kissed her forehead. There was no chatter or cooing–looking back, there is so much silence, but there was no need for words. The cries of you’re here and I’m delighted and you’re here, and I’m so sorry, though unspoken, filled the room.

We took so many pictures. The compulsion: capture every instant. Store it up. True treasure. Truth and treasure. The room was filled with these two things. There was no posing, no checking for a camera, no glancing or glimpsing.I did not look at April, Abby, or Greg–I did not worry about any of them. There was no concern for anyone or anything–our time in that room was the most singular time in our lives. We were all alone, so alone with that sweet baby. Her nineteen ounces filled all space.

We held Stephanie Grace throughout the afternoon. At 3:00, the nurses suggested making a pallet for the baby on the sofa, so April could see her from her bed. I told Stephanie good-bye, once, then twice, and, in order to live, I have to know she heard my apologies as well. They are legion.

***************

There is so much that we do that is wrong and ill. We make decisions and say words that are foolish and hateful. We destroy ourselves with anger and rage and all sorts of envy. We self-destruct and immolate and blaze and blaze and blaze. There is so much wrong. There is so much wrong in all of us.

But I have seen the right, and I have seen the perfect. I have glimpsed the glory, and I will tell the tale.

***************

As she went to sleep empty-armed and aching in her hospital bed last night, April said to me through the darkness, “I know this sounds crazy, but I’d do it all again.”

As would we all.

 

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“I Was Hers First”

I know adoptive parents with sweet adoption stories—they made cute scrapbooks and were matched with young pregnant couples; at the hospitals to cut the umbilical cords, they were also able to name their babies after family members; their babies bonded with them instantly, and the adoptions took only six weeks; their children look just like them, and everything about their adoptive families has been Parents magazine centerfold quality.

Our adoption, on the other hand, was a haphazard affair—as young twenty-somethings, we checked the box that said “foster to adopt,” as a sort of plan B in case we really liked a kid one day and wanted to be first in line. I can still recall saying innocently to Greg, “What if it turns out we can’t have kids? Wouldn’t that be funny—to have already marked “adopt”?” And then April came to us at a year and a week—her elderly foster mom was having back surgery and wouldn’t be able to lift the stocky toddler for six weeks. We were to be a sort of respite, a pit stop on her way home to New York. Six long months later, she did head there—and Baby Jessica played out in my own driveway, my 18 month-old screaming, “Mommy,” kicking as we buckled her in. We cried for months and sought solace in speaking to her birth relatives on the phone as she hollered, “Me talk!” in the background. Finally, they decided to return her to us. On one of the happiest days of our lives, April tore from the car that brought her home from NY to GA and ran through our door, shrieking her elation. Three long years later, after trials and appeals that seemed never-ending, April was ours. It was over.

But it’s never really over with an adoption. There are days that overcome you—emotions too great, things too unfair, places you know both moms and both dads should be. They include prom, graduation, and, for me at least, emergency rooms.

April’s birthmother, Susan, is never more with me than she is on a drive to the emergency room; in 2010, during April’s appendectomy, Susan’s spirit was beside me in the car, bellowing, “Drive faster!” Again, last night, when I took April’s pulse in the living room—178!—Susan was instantly there with me, a hollering apparition telling me not to mess this up. Her kid was depending on me. On the drive to the hospital, as I questioned and re-questioned April—“Can you breathe? Is your headache better? Is your vision blurred?”—Susan was right there, riding shotgun, telling me to drive quickly, but safely. And in the ER, as I reminded the staff, “She’s got great insurance, run any test you need,” insisting, “Do not release us until you know she is well—we are in no rush,” Susan was there, too. She was depending on me to do and say all the right things for our daughter.

For an adoptive parent, when an ER nurse looks at you like you are just another over-reacting mom, it is hard not to yell things like, “You will never understand who this girl is, what she cost, and what she means.” So you try to rein it in, act normally, even though you are terrified that you will have to call the other woman who loves your child as much as you do and tell her, “Um, I botched this.”

There is so much to botch. So much already botched.

If you know me, you know I have failed my daughter in a thousand different ways, and that the generic absolution “All moms fall short” doesn’t soothe me, doesn’t rectify all of my shortcomings. We adoptive moms carry around ever-present measuring sticks, and we become experts at flogging ourselves with them.

But, thankfully, last night, I measured up. In the car on the way home, we pulled into Krystal’s, and I asked April how I did. “Oh, you were good, Mom—I’d give you a 9 at least. You didn’t yell or anything.”

We got home at 1:15 AM, and I watched her eat, then text all her concerned friends, assuring them she was feeling much better. I followed her to her bedroom, checked, then double-checked to make sure she was okay and needed nothing—“How many times do I have to tell you I’m fine now?” was her final grumble of the night, followed by a murmured, “Love.”

Susan, of course, was gone by then—she’d left in the parking lot, the moment that April said, “Can we go to Krystal’s? I’m starved!” She trusts me with the day-to-day. But, on the important days, she is there—front and center, her New York accent directing most of my steps.

Tomorrow, she will call here, I’m sure. Because on January 28, 1994, she gave birth to our daughter in a hospital in Hudson, New York. And tomorrow, she’ll talk to our girl, and she’ll tell April all the things that I will never know—how she cried, what she wore, who came to see her. She will tell April their hospital story–the most important one of all—and the reason I must get all of mine right.