Category Archives: Caregiving

The Grand Mistake; The Minor Miracle (Cancer Number Four: Really???)

IMG_20191111_094530Last Saturday, I went to the mall, and as I was leaving, I bumped into a former student and her mother. They are the kindest of people, and I was wild-eyed and sad–it was just sixteen days from my father’s death by suicide and thirty-six hours before my husband’s second heart surgery in eight weeks. It was just too much, and they could tell.

“How can we help you?” the mother asked; I mumbled that I didn’t know, that there was vague talk of a fundraiser and that we had a Boston butt–I’d just eaten some for breakfast, in fact.

“We do food,” the mom said. “I’ll bring you a frozen crockpot meal later–that way, you can just pop it in whenever you want.”

I can’t even be sure I was appropriately grateful–tired and overwhelmed, I was mainly just glad to live in a town where people will feed you if you don’t even know their first names.


On Monday, Greg had his surgery/procedure–we had been told it had a 50/50 chance of working, so when I saw the cocky strut of the surgeon’s assistant, I was relieved. It took two plugs, but his heart was not going to be a problem anymore.

They moved him to a room overlooking the water, and we prepared to settle in for a quick overnight stay. I was hoping for an overdue lunch and a catnap–I had only slept two hours the night before and, worried, been unable to eat much that morning.

But then the nurse said, “And you have had ————recently?”

We were confused–and then she added something like, “For the ———- cancer?”

Met by silence and sputtering, she showed me the record. She pointed to his name and birthdate, she pointed to the name of the cancer–he had cancer in a vital organ. It had not metastasized–I remember being grateful for that. My brain jackhammered simultaneous thoughts, over and over saying, above all the others:

Cancer #4 has been here for weeks? And we hadn’t been told at all?

We have wasted so much time.

Cancer #4 is here.

Shaking, I immediately called his oral oncologist and left a message–I thought that the OSCC would have gone to his brain, not traveled south–that was my only stopping point, the only hinge holding me: I’d never read that it could go where it evidently was. I called the hospital’s patient advocate, got no answer; texted my cousin, a malpractice attorney, and even called the hospital’s attorneys–because someone needed to get in Greg’s room and answer questions.

Because it was there in print. He had cancer.

We asked for the charge nurse, and a cluster of people gathered–all appropriately concerned. My lawyer cousin called, and he made me laugh in the way that cousins do, offering colorful language and good advice, suggesting an X-ray.

Greg, still required to be immobile, lay on his bed. “I had an X-ray in October,” he said, “Can you look at that X-ray, too?”

They did. And, in it, his vital organs were intact.

There was still so much confusion–but there was enough relief that as the X-ray tech arrived, I said, “I’m going to dash down and get something to eat.”


I stepped off the elevator, my mind flying–we still had ninety minutes in the business day–a lot of time to pursue answers. Greg had told the nurses that he would have answers before he left the hospital Tuesday–we were not waiting until Wednesday and then driving back to talk to so-and-so–we were not going to be patient or polite. Cancer #4 left no time for that. I was strategizing–who would best help us? Who could sort this out?

Then, halfway to the cafeteria, I spied them–in resplendent businesswear, tags bearing credentials I liked: there was The Powerful Person (TPP), involved in conversation.

And it wasn’t rest that hit me, but there was an immediate sense that now, the puzzle would be sorted.

I took a second to calm myself, tried to remember my cotillion skills, stuck out my hand, introduced myself and said, “I’m sorry to interrupt, but I can assure you that the most important thing going on in this hospital is happening in my husband’s room right now. Can you please come there with me?”

And The Powerful Person did.

On the elevator, I gave them the litany of medical tragedies, the testimonies of Greg’s stoicism, the story of my father’s death–and I said, “We have to know if this is cancer #4.”


TPP stopped at the nurse’s desk, then went in and met Greg.

Even now, I just remember how much better I felt: there was an authority present, someone who could help. TPP said the right things, shook Greg’s hand, distributed business cards. Cared–and took control.

So, I left to go eat.


The end of the story is simply this: he didn’t have cancer. A machine or a human had erred. (We still aren’t clear which.)

As people do, our friends and family tried to figure out the why behind this happening: what were we supposed to learn? Was it so we could pray for the person who did have cancer? Why allow us to be shaken so?

I know, of course, that there does not have to be a reason, that things sometimes just happen. That this will one day be just a bad memory, a cosmic joke.

Then, I will testify that in a short 55 days in the fall of 2019, Greg had open heart surgery and complications; he had a second, chancy procedure; my father died by suicide–and, to top it all off, we were told that cancer number four had said hello.

I will remember how awful that felt–that the fear and the powerlessness were overwhelming.

And I will also remember how it felt to hand things over–to let go, to walk away, to say to someone else, “You fix it,” and feel absolutely certain they would.


Tuesday, as we left the hospital–after adding more business cards to our collection–I got a text. It was the mother, checking in–she would being dinner the next day,


I stayed home from work on Wednesday. I was still too shaken and exhausted by ourScreenshot_20191117-205144 near-miss,  and Greg was back on restrictions–couldn’t lift, couldn’t drive. I lay in bed until 11:00 AM then forced myself to do chores. Our normally tidy house was no longer so–I couldn’t do it all: work, grade, tutor, exercise, cook, and clean. I vacuumed, noting that somehow the antique marble coffee table was in the middle of the rug. I washed sheets and the duvet cover, going outside midway through the drying cycle to ensure that the duvet was not eating the sheets, not wanting to deal with that.

I tried hard–to rest and to clean. To keep a balance. I needed balance.

So, later, when I opened the dryer to find that the denim duvet had, in fact, eaten the sheets, I just brought the ball of linens in and set it on the kitchen table. I tried to unknot it, but I was getting nowhere. Greg came over to offer suggestions since he could not help pull. The knot only grew tighter–and, since all I wanted to do was crawl back into bed, and I had to have sheets to do that–I felt the frustrated tears threatening: this was all so stupid and unfair.

On top of everything else, I couldn’t even make my bed.

That instant, the doorbell rang.


The student’s parents stood on the stoop, bearing a frozen pork loin, some cranberries and green beans. Their car was running in the driveway. They smiled up at me, offering the food.

“I’m going to need you to come in here and move a table and help me with some sheets,” I said bluntly. (I hope, now, writing this, that I thanked them for the food, Please, Lord, let me have thanked them for the food.)

“A table??? Sheets???” they smiled gamely, confused. The husband went to shut off the car, and then we filed in the house, where, right after we made polite introductions, her husband helped me move the coffee table.

The sheets were still on the kitchen table. My voice quavered as I talked about them–I was still so upset–and then the wife said her husband was great with knots, and he was. Four grown adults stood there looking at sheets with such satisfaction.

As they left, I stood outside with them in the drizzle and tried to convey my thanks, the marvel of the timing–it overwhelmed me that the doorbell had rung just when it did. I ended up crying in her arms, as she murmured that it was all “too much, too much for anyone.”

I would have been embarrassed, had I not been so tired, had I not been so humbled at God’s grace and power.

He had shown me–in less than 48 hours–that he was in the Big–but he was also in the Small.

In that is my rest. In that is my strength.

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Please: Don’t Ask How I Am (When You Know)

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(Note: This is not to step on toes. This is to help me survive the grocery store. And any tragedy survivor’s inner circle should always ask–multiple times a day.)

Five weeks ago, after Greg’s open-heart surgery, when he was housebound and didn’t really feel well, I would pick him up after work and we would go sit at Ruby Tuesday’s and share an appetizer. It worked to fight cabin fever, and sometimes, sitting across the table from each other, I could feel the trauma start to slip away, could glimpse the people we once were.

One day, on the way back to the house, when I thought he had also briefly remembered, “Oh, I used to like her,” I said, “I think it would take more than a month on an island together to recover. More than a month. I’d need two weeks of just pure silence.”

And he agreed.


Of course, we did not get that. My father died by suicide days later, leaving us–once again–completely unmoored.

(If you have joined this blog for the suicide segment, but have missed the preceding anencephaly and cancer segments, you need to know this: the members of my little family are all too fatigued/wounded/calloused to comfort one another.)

Beyond encouraging one another to eat and suggesting, “Perhaps a hot shower would help?” we have little to offer in the way of assistance.

We can offer you little as well.


My father’s death has me exhausted by the simplest of questions: “How are you? I am asked this a hundred times a day by the kindest of people. It is, after all, the all-purpose American greeting.

It seems rude, then, to suggest this, but I believe that perhaps after tragedies that question should remain unasked for a while. These days, I can feel “fine” and five minutes later be weeping in my car. Everything is confusing; my emotions are ajumble–do I want to go eat with a friend, or do I want to lie in bed with my cat? Right now, I can’t decide between Mr. Pibb and Coke without crying–so I certainly can’t tell you how I am.

Saying “fine” after a tragedy is easy, but it’s a lie. Not only have I lost my father, but I’m watching my daughters and brothers struggle from hours (upon hours) away.

Saying “awful,” while more honest, necessitates a conversation that neither of us may really want to have–and it’s not entirely true because there are still bits of joy in each day.

Saying “sad” might make you pat me on the shoulder, and then, depending on the depth of affection we share, I might collapse crying in your arms at school or at Walmart.

And you know all this: you know I’m not fine. You know I am awful. You know I am sad. So, maybe just take a break from asking for a while.

Just say, “I’m glad to see you.” Then–maybe–smile.

In the days right after a tragedy, just be glad that the survivors are coming through the door at work or are seated next to you at church. Acknowledge their presence, but don’t question it. It’s one less answer they’ll have to search for, and they will be grateful.

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Time and Tiaras: On the Death of my Best Friend

222888_1018767942182_6886_nThis blog was originally a Facebook note on September 19, 2009. (Today I found myself writing part two, so I thought I would post this, part one, tonight.)

This has been a hard weekend. A teacher from Center Elementary, Delilah Thornton, passed away suddenly—and although I did not know her, I do know Suzanne Bokor, who now has lost her best friend. Who writes on her Facebook page, “I can’t sleep or stop crying . . . I don’t know what I’m gonna do without her . . . Delilah, you will ALWAYS be with me . . . My heart is broken. I love you, Delilah.” And I know the land that Suzanne is walking into, because it is one that I have been walking for almost two years, since the death of my dearest adult friend, Stephanie Saussy. 

When you are a kid, friendships are almost prescribed: your seatmate on the bus, your softball teammates, your mother’s best friend’s kid. It doesn’t matter whether you like these people or not, because you are stuck: they are going to be on that bus, at that game, on that porch, playing Monopoly under duress while your reprieved, happy mothers giggle in the next room. Make friends; make do, take what you’ve got.


Adult friendships are different; they are based more on a choice: I like this person. A lot is at stake in the buy-in—as an adult, you’ve made mistakes bigger than dropping your lunch tray, you’ve got more water under more bridges, and you think really carefully about who you are going to show those long-buried skeletons to. Then there’s the time investment—something laundry and carpooling leave too little of. For mothers, especially, I think friendships carry an added cost: you know that your daughters are going to idolize your friends, just as you did Mrs. Campbell and Mrs. Fesperman in your childhood world. So, you hope to pick someone worthy of the time and the tiaras—and in Steph, largely, I had both. 


I didn’t move back to Waycross happily—we were broke, Greg was sick–I didn’t know or care who my neighbors were. Sure, I knew that behind us was the Saussy’s house, but I didn’t know a Saussy was living there. It took about three months for Abby and C——- to discover one another through the backyard bushes, and, truly, I spent the first sixth months of our friendship apologizing for my family’s intrusion. I was a teenager again—the uncool kid, the fat chick on the periphery, star-struck by the cheerleader with the great husband, the easy pregnancy, the monogram-wearing kid, and the perfect smile. She was and had everything I would never be or have, and why on earth was I now in her kitchen? 


I know now that God put me in that kitchen, that He lined up our lives—that my time in Cancer Land, complete with a 7 month-old infant, uncannily paralleled hers. Greg and I had lived it: we had counted the minutes until the next Kytril pill; we had shaved his head, worrying about what our children would think; we had struggled through the stupid marriage stuff (“Why can’t you put the milk up?”), while simultaneously struggling through the deep stuff (“All Mommy can tell you is, I really don’t think Daddy is going to die.”) 


And so, Steph and I had common ground on which we based an uncommon friendship: 224303_1018767902181_5896_nthe teetotaler and the gal who enjoyed the glass of good merlot, the mother whose kids were bedraggled and barefoot and the mom whose kids wore matching Crocs with their every outfit. I exasperated her with my total cluelessness about the feminine world of makeup and hair: “You send that child over HERE before that dance recital. Don’t you TOUCH her hair.” Steph was my girls’ biggest fan, and the stars in their eyes were certainly those that I expected. 


Now, I am left, holding that friendship—she is gone. One of the ways in which the loss of an adult friend differs from the loss of a childhood buddy is you know so much more. You can count the cost. You know the tradition of coming over “just before lunch on Christmas” is over. That there won’t be anyone else that you can lie in bed with on a rainy afternoon and watch “The Waltons.” That it will be years before another friend, a replacement, looks you in the eye and says, “I haven’t ever told anyone this.” You know your daughters will hold onto the bracelet that’s broken, the T-shirt that’s stained, and you will not be able to fight their insistent “Miss Stephanie gave this to me.”
There’s no more giving—you’ve gotten all you will get. And the instant you realize that, your heart is broken.

The heartbreak that follows the death of your friend is totally misunderstood. You have not lost a relative. You have not lost a child. You have not gotten a divorce. You have just lost a friend. You will go to work, not missing a day. You will be kind to the busybodies who stop you at Kroger, prattling about “her tragic death,” oblivious to the fact that part of you is now, forever, gone. You will cry at night alone, after your understanding husband gives up on understanding. You will wear her earrings her family gave you, touching them just to get through the day.

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You will get through an amazing number of days, you and your broken heart. You will see a sunset, hear a song, smell her perfume—even, sometimes, hear her laugh like she’s in the room. You’ll even see her in your dreams: That is the best of all. 


And you’ll realize that an adult friendship is the best of all—it’s the hard stuff: marriage, kids, sickness, bills; the fun stuff—first birthdays, drinks in the backyard on a perfect summer night; the forever stuff: listening to music in the dark on a drive, looking at the stars, knowing all is right in the world, at least at that exact instant. You appreciate that someone with one true friend is rich indeed, even if that friend leaves for Heaven early.
You know this, because you’ve grown up.

Your Broken Pots: His Glory

71021017_2747127791987277_3629301193945120768_nToday, I spent silent hours in the car with Greg–we were going, again, to the doctor. We don’t even pretend anymore; this morning, we didn’t want to be in the car, didn’t want to be spending our day in waiting rooms. We did not buy Chick-fil-a biscuits on the way out of town, didn’t discuss going to the arboretum after the appointments–there was no attempt to make this into a fun trip.

He got into the backseat of the car–he can’t ride in the front seat near A/C with his dry eyes. He played Dig It for ninety minutes while I listened to Jason Aldean on Pandora.

We were alone, together, absolutely silent, so weary of it all.


The drive home was slightly better–he’d gotten bad news about his heart, but good news about his eyes, and, besides, the Braves were on WTBS.

Distraction is good in a crisis, and October medical setbacks are splendid, really–there’s always baseball to watch, to pretend to care about. (Faking interest in every round of Wimbledon is much more difficult, but we managed to in 2001.)

When we got home, we continued watching, and I idly scrolled through Instagram–cats and triplets cheer me up when nothing else will.  And, there, mixed in with the jumble of cheerful pics, there was a wedding picture of  Juli Wilson, pastor Jarrid Wilson’s young widow. Her husband died by suicide a month ago–it was national news.

As I looked at the sweet, hopeful wedding picture, with its 37,000 likes–pictures taken just twelve weeks ago had only 527–and I thought, “This woman didn’t want this ministry.”

Just weeks ago, she was posting pics of her young sons on the ball field, silly shots with her husband at a barbeque, the whole family piled in the pool. Thirty days later, not only has her whole world changed, but she also has 161,000 followers.

She didn’t want them. That. 

She wanted something else entirely.


That’s the whole problem, really: what we wanted is so far from what we got.

That sounds so simple that it’s almost moronic, but think about how far what you have right now is from what you wanted.

I wanted to be a stay at home wife, a homeschool mom, to have scads of children who had my eyes; I wanted to quilt and create. I cannot even confess all of the things that I wanted that I do not have because doing so gets me lost in a world of sorrow and lack.

Balancing the loss of what we wanted and the reality of what we have–and finding a bearable place to put all that pain–seems, at times, to be the bulk of adulthood’s mental work. There’s still a part of each of us that stands and screams, “This is not what I wanted!” and we have to try to silence the shouting, have to try to convince ourselves that this–though unwanted–is good.


Three weeks ago, when Greg was having his mitral valve replacement, we were told multiple times that he could die on the table, that–due to the calcification on his annulus– his heart could break in half.

My father, my brother, and friends in our inner circle offered to sit with me in the waiting room. I told them all no.

I wanted no one near.


I can’t help but think of my own desire for solitude and space when I consider Juli Wilson.

I cannot imagine my husband’s death making national news, my reeling family in the media spotlight, TV commentators dissecting his final hours, YouTube pastors and laypeople pontificating on his ultimate destiny–heaven or hell? And lost is the fact that Jarrid Wilson was a person, that there are people whom he is known to whose hearts are breaking.

And faced with this–the reality that she knew her husband, his heart, and their mission, Juli has decided to publicly walk forward on a path she did not choose.  To accept the mantle she did not want, could not have dreamed of.

And that’s what we as Christians do–it’s what we must do to make sense out of this messy and chaotic earthly life.

We must hold up our broken pots, show them to each other, say, “This is what I have over here, and this is what I have learned so far.” 

The beauty of our brokenness is that we don’t even have to create one perfect clay pot. We don’t have to have one single part of our lives together–not one single part–because we are covered by God’s grace, and people can see that light inside of us.


On Facebook this morning, after our long post about Greg’s rapid AFib and expensive eye medicine and weariness, there was a comment from an old friend: “It’s very brave for you to share your lives with us. At the risk of sounding trite and cliche “your tests are testimonies” to everyone.”

Greg and I are surprised by messages like these. We know we are deeper in the mire than we have ever been Despite this, God is using our walk.

Isn’t that amazing?


Greg and I cannot fathom how this will all end, or if it will end, ever. We are honest when we say this to each other.

Today, I told him, “What I miss most is having hope.”

And he reminded me that there is still, deep within me, light. “Aren’t you the one who says it will all work out, that it will be okay?”

“Oh, that?” I replied, “That’s faith. I have plenty of faith.”


Faith is my one clay pot, over in the corner, a little chipped but still unbroken.

I suppose Juli Wilson has a pot like mine–one she can’t put down, won’t give up, even if too many people are watching her carry it right now, even if she wants to rest.

Because once almost all of your pots are broken–once you have given up forever on finances and family and ease–you see the beauty in the few pots you still possess, and you want to show them, to share them, to say, “I can count the things I still care about, the things I am still sure of, on three fingers. But let me show you this beautiful pot that God gave me.”

Your remaining faith: His eternal glory.

 

 

 

 

 

 

 

 

 

 

 

Things God Allows

70166908_2269409233371506_8850290329752961024_nThere is something that God does for me before a crisis–when I can see the giant, dark waves coming and feel the sand beginning to wash out beneath me. He allows me, always, a brief time with friends. The quickest of rejuvenations–not weeks on a beach, not even lingering dinners–just quick reminders: You also have this.

You have someone who smiles the second they see you. Who rearranges their schedule, welcomes you with snacks, wakes their slumbering kids, sits everyone in comfy chairs and lets you, for a moment, forget that offshore the waves are rising, and soon enough, they will be crashing.

I did that in August–sat in my favorite chair in my friend Lynn’s house, some 260 miles from mine. I petted her dog, joked with her kids, ate a donut.

Then it was time to go home.

I didn’t want to, really. Major medical crisis #4 was at home. I wanted to stay away, to wander around Atlanta, to go to Lenox Square–just as I had in college–and look idly at every single purse in Macy’s. To stand there and  feel their leather, to peer inside, looking for those with quality liners–because a cheerful purse lining is one of life’s unnoticed and unmentioned little pleasures. I wanted to eat a pretzel and people watch. To distract myself with the whorls of people and the chortling children.

I was still deciding–home or the mall?–as Lynn walked me to my car. “Go home and go to the Y–walking at the Y will be better for you than looking at purses,” she said, patting the roof of the car.

And I obeyed.


I tell Greg that I wish I knew how many times I have ridden home from Atlanta, taken I-75 to US-82. I want a count because I love that drive–a few times, I have even taken it as a 500-mile day trip, running up to visit museums. For me, those miles are full of good memories with family and friends–now, almost a half a century’s worth. There are places between Cordele and Tifton where there is big sky. There are cows on low hills. There is my favorite pond near Alapaha–at sunset, with the wading birds and cypress trees, there’s almost nowhere prettier.

Sometimes I just pull over and let myself look.


That Sunday, traffic was light. As I sang along with Jason Aldean on Pandora and drank my Dr. Pepper, I suddenly thought, “I am driving 70 MPH toward a place that I do not want to go.

But the reprieve, I knew, was over.


I teach school–I spend seven hours a day with teens who have not yet found their paths. They are still young enough to say things like, “I will never have a boss,” to think that eight dollars an hour is a lot of money, to believe that a fast car will bring them happiness.

But adulthood–especially when combined with tragedy, as most adulthoods are–will blow those illusions away. Even those we need,  the things we want to believe.

That’s amazing, isn’t it? We adults routinely do things we do not want to do, things that are so difficult. We go back to school at night; we relocate to help sick parents; we put our own dreams on hold for others; we face horrors–from bankruptcies to the deaths of children, things that are so terrible that we cannot even put them into words. 

We face things that we know are going to break and destroy us–but we keep our faces forward and we keep walking.

That is what it’s so insane to me about the Christian faith: we can continue to walk.

There’s no need to run away when we know that God is with us–when we have been assured that He is in the bottom of the ocean, on the rocky cliffs, in the low valleys–when we know to the very core of our souls that we are never alone, well, then we can walk.

(Note: I hate that some in the modern church make it seem like there is an epiphany-level of Christianity where everyone automatically feels perfect/better. Because I have never felt whole or complete, like my “God-shaped hole” (the one that the song says is “in all of us”) has been entirely filled. And the fact that I didn’t feel like holding my head high and shoulders back used to bother me–but I now see God also values the walking itself.)


There was so much blue sky that day. I love a blue sky, white cloud day, and on that drive home, I felt fed by it. Like God was saying, “Remember, I do this,” like He was painting pictures for me to remember on the long days in the hospital, letting me store up comfort for the walk I didn’t want to take.

There is, after all, nothing in us that wants to spend days 39-45 in a hospital. Greg doesn’t want to have his sternum “sawed in half” now–or again in twelve years. We don’t want to miss work. We don’t want the bills or the stress or the sorrow or the pain.

But in three days, we will be in our third hospital. The surgery will go better than expected. In ICU, he will do so well that the doctors and nurses will marvel, as they always do.  We will watch Fox News and I will make sure the nurses wash their hands and give him good pain medication and the CNAs bring him ice, and I will ask the custodians about their grandchildren and the cafeteria workers about their kids and thank the orderlies when they bring me blankets. 

When I am sad, when it is all just too much, I will go to the lobby where the exultant new mothers sit in wheelchairs cradling their sweet babies, waiting to go home. I will watch their husbands strap the tiny babies’ carseats in, then turn and carefully help their wives into the cars.

Again and again, I will watch as new families leave the hospital, and I will be so happy–because my God in his mercy allows that, too.

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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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It’s as Awful as You Think: Cancer the Third Time

1911814_10202755864990450_1028741040_nI am just mad. Any blog about this cancer is going to have to start out with a lot of anger and wrath and ranting. As an English teacher, I would like to give some explication, set the background up, tell you little things about the past battles Greg has had with cancer, and kind of give you a general lay of the land. But I can’t, because I am MAD.

My husband should not have to have skin from his arms sewn in his mouth. He should not have to have his neck dissected and stapled like Frankenstein. He should not have to miss work without pay. Surviving a bone marrow transplant should not entail horror after horror. In a fair world, once you sat on that lonely bicycle seat behind that four foot steel door and let your body be “killed” by total body irradiation so that you could be brought back to life by a bone marrow transplant–well, in a fair world, after that, you shouldn’t have to have any body parts sawed off or cut out.

You should get to keep all your body parts.

My younger daughter, who worked so hard for so long, winning state and national academic recognition, should not have the last thirteen weeks of her senior year be consumed by her parents’ sorrow. I can see her at a cocktail party in the future, “My senior year? Oh, that’s when my mother was crying on the floor while  my dad was holding the cat and playing video games to try to distract himself from the fact that he was about to have a neck dissection.”

And I shouldn’t have to sit in a hospital room for a week watching my husband suffer. The 31 consecutive days in 2001 should have been the lifetime limit. We weren’t raw then–we were too ignorant to be angry. We didn’t know that financial destruction was coming, that we would spend thousands of dollars–enough to buy a car–on eyedrops (just eyedrops!)–after his tear ducts were destroyed. We didn’t know that, exhausted, he would go to the bedroom around 7:30 almost every night for the rest of his life–no late night movies or card games for him. No walks on the beach or screaming “Happy New Year’s.” We knew nothing of deductibles and co-pays and a life that is ruled by them.

We knew nothing.

And now we do. Now we know so much.


I didn’t even go with him to Jacksonville on the day he got this third diagnosis. I didn’t have many sick days, and he didn’t want me to. He texted me during my last class: “It’s the same kind of cancer as last time” and my world didn’t even crumble–after so many consecutive tragedies, it’s nowhere near rebuilt.

I stepped out on the back porch, talked to him briefly, hearing the same earnest tones I so love. This is what it is, this is what we will do. I heard the sorrow in his voice.

I summoned another teacher to my classroom, directing him to make me laugh–and make my students laugh–in the final minutes until the bell rang. He did, and then he stood there after the bell, waiting for my daughter, who had to be told.

She came in with her best friend, and they started raiding the mini-fridge. She called a cheerful hello to my co-worker. I said mildly from the hall, “You are interpreting him being here wrong.” And her face fell.

But she didn’t cry.


I went and told my boss, who was about to start a faculty meeting, “Greg says tell the staff. Go ahead and announce it.”

I left, and he did.

My happiest friend said later, “When he announced that, it was like I couldn’t hear any more.


We are some resilient folk. We bounce back, push on, forge ahead. But there’s no real forging this time. We don’t want to walk. None of us. Not this path.

We abandoned the rules we’d used to cope with Stephanie Grace’s death: be nice and give each other space. They were now moot: no one could be nice when everything was angry–and the anger made it initially impossible for any of us to be in the same room.

We set two new ground rules: no talking about cancer among ourselves–and no company. The plan; get the drawbridge up, lick our wounds, eat comfort food, pet our cats.

And cry.


That Sunday night, as we readied ourselves for a week at work, I listed our co-workers with cancer, all of whom have markedly better attitudes.

I was hanging up shirts when I asked Greg, “Why can’t we be like that? Chipper and driven? Why are we like this?”

Greg looked away from the television, met my eyes, and replied slowly, as if explaining a basic concept to a small child, “We don’t wear the same clothes as they do. We don’t watch the same TV shows. We don’t like the same foods. So we don’t have to have the same attitude about cancer. I don’t have to be all whoo-hoo . . . I can be this is going to stink for a while.


On Tuesday, a swagger-filled fifteen-year-old boy stopped by my classroom with a friend, a fellow I didn’t know. They stood with their hands in their back pockets. “I am praying for Mr. Grimes,” my student said. “He is in my prayers,” added the other boy, reverently.

They turned and headed out the door.

I breathed the air.

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Measuring Sticks (Suffering is not a Competition)

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I don’t really like church. I wake up on Sunday mornings and try to talk myself out of going. While I  dilly-dally over breakfast, playing online Scrabble, I tell myself there are other, more productive things I could do,

No one else in my family goes. (I once believed I was destined to be a quiver-full wife, and now, ironically, I am, mostly, alone on the pew.) So it is tempting to stay home and pet cats and drink Dr. Pepper.

But lately, I go, and for the stupidest of reasons. A friend, a handsome, mildly-womanizing good old boy, attends his own church weekly. And once when I teased him about going on Sundays, probably hungover, he said simply, “You always learn something.”

Point taken.


This morning, my first thought upon waking was a PMS-fueled, yet pragmatic, “What is Screenshot_20170917-143848even the point?” But twenty minutes before church was to begin, I mustered the energy to dress, putting on my twenty-five-pounds-ago pants that were, in my favorite aunt’s polite terms, “unflattering” even when they fit. I didn’t brush my teeth.

My husband wandered in the bathroom and asked mildly, “You going? The last thing I heard was you asking the cat if you should go . . . She must have said yes.”

 


The door greeters were, thankfully, non-handshaky, and I made it through the narthex without a hug. The lady behind me had a cough, and I didn’t really like the songs, but I was singing. My mind was everywhere–no one I know is at their personal mental best right now after Hurricane Irma–and I was really wrestling to focus on the lyrics, to leave my hectic week behind me, to feel churchy instead of blah.

The chorus leader began “When You Walk Into the Room,” a song that I like enough that I wouldn’t skip it on Pandora. As we congregants sang, “When you walk into the room/The dead begin to rise/Cause there is resurrection life/In all You do,” from across the sanctuary, there came a joyous shout.

Tina Goble, a mother who, having lost her five-year-old daughter to DIPG brain cancer, fully gets the promise of the resurrection,  rejoiced, shouting praise to our God who sustains.

I looked over and thought, “She is so together. She lost her daughter, yet can worship so freely.”

And, immediately, in my spirit, I heard, “Give yourself some credit. You lost your granddaughter, and you are here.”

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Once again, I was getting out my measuring sticks in church. Thinking: she is better than me. She is more patient, more genuinely kind. Why, she is even able, somehow, to sincerely smile–even with her eyes.

When I see Tina, my reaction is always immediately positive. I give her gold stars for being in public, having makeup on, and being so peppy.  My instinct is adulation.

When I see myself in the mirror now, most days, I’m just surprised–who knew that skin could be that gray or hair could be that stringy? I’m full of judgment and disdain for myself. My instinct is condemnation.

That’s what placeholder Christianity does–it puts Tina here and me there. She’s nearer Jesus because she can smile and curl her hair and raise her hands, and I am much farther from Christ because I am here with unbrushed teeth, I looked at Facebook on my phone during the sermon, and then took my shoe off and gave myself a mini foot massage–in church!!!

And my mind gets full, so full, of all the things that I am not. There are so many things that I am not. Then, the pain at all my lack comes in, followed by the envy of others who are doing life better–who are successfully navigating over and around and through their waves, while I am going under again.

And it is so stupid.

Tina and I both faced certain horror. We both held children who were given death sentences, children who were bombarded with cannots and willnots, and who needed accompanying past them. Precious little girls who needed love on the journey to death, and we gave them that.

Christ allowed us to give them that. 

Now, we both have days where we are empty and aching. Days where the smile of another child isn’t enough. Days where we remember the heartbreaks we witnessed. Days where we touch our lost children’s clothes and blankets–and we want so desperately to kiss our girls’ sweet foreheads again.

That I would take out a measuring stick and want to compare my horror with hers, my coping with hers, my current smile and hairdo with hers–and that I would even SEE or THINK about these stupid, superficial things–having seen all that I have, having endured so much, shows desperately the need we have a revelation of Grace, true Grace.

Our God is not a God of checklists and balanced scales. He does not keep track of which of us was kinder to the greeters. He does not care whose breath is fresher. He does not ever notice our hairstyles.

For God’s Word tells us that He does not look upon our outward appearance, but that He looks upon our hearts, and he sees them Whole. And so, when He saw the two of us talking at lunch, He probably chuckled and said to Jesus, “Look, there’s Rachel–she’s telling Tina that she forgot, for a second, the most important thing . . .

When I look at them, I only see You.”

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.

 

 

 

 

 

 

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.)