It never gets easier- coming back to Duke. Doesn’t matter if it’s a routine check or treatment- I still feel a low simmering anger at feeling afraid, at wondering if “it” is back, at having to think about cancer at all. Doesn’t help that the piano player in the atrium is playing all sorts of inappropriate AF music...”From this valley they say you are going...” and “Lullabye and goodnight...” WTF?

There is nothing but waiting here. Waiting and watching the others- many frankly sick, wearing masks, trailing oxygen, sitting in wheelchairs while relatives try to make happy, light chatter. All while we listen to “America the Beautiful.”

Everything about cancer is weird. Triple Negative weird.


TNBC- Or How I Spent My Year Not Writing...

A year ago today I lost a body part to become cancer free. A year ago today also, my new daughter-in-law learned she had leukemia. Seven months before that, my other daughter-in-law had a massive heart attack and very nearly died. It's been a hell of an 18 month journey, but today all three of us are alive and, as far as we know, healthy. But health comes at a cost.

I can't, and wouldn't, speak for my daughters-in-law experiences. Those stories are theirs to tell. But I will say this- they are two of the bravest, most compassionate and fierce women I know. Our bonds have grown stronger, tempered by our regrettable sisterhood. It is one of the "gifts" I've received from Triple Negative Breast Cancer. 

I have been loved, comforted and supported by my family and friends, in ways I find almost incomprehensible. If I ever doubted, in my darkest moments, that I was loved- that fear has been erased. For that, I am profoundly grateful.

But as for all the other crap that comes along with having cancer- well, it can just kiss my ass!

I remember my first trip to the breast cancer treatment center- the explosion of pink, the gift bag, the promise of free makeovers and massages, the smiling faces of the volunteers and staff. If I'd been dropped into the middle of the place, not knowing what it was, I would've mistaken it for a sweepstakes giveaway. Lucky you, they seemed to be saying, you have breast cancer!

But the patients sitting in the waiting room knew- the ones who were there for treatment. The pink balloons, the adult coloring station, it didn't fool them. Was that why, I wondered, they escorted me and my entourage of family, into a smaller waiting room, separated from the rest by a glass brick wall?

A squad of doctors, nurses, social workers, even a chaplain, all arrived to tell me I had a simple, small tumor- a minor almost-not-even-cancer, DCIS. A group of cells completely contained in a milk duct had formed a bond and needed to be removed. A lumpectomy would take care of it. I might only need radiation afterward and not chemotherapy. They chuckled when I asked about Triple Negative Breast Cancer- because, I knew. They didn't.  But somehow, in some strange prescience, I just knew.

They smiled at me, like I was a small child or an idiot, looked over my shoulder and spoke to my son and his wife. "You're mother's going to die- but not for a long while and not from breast cancer," the radiologist assured them.

Three lumpectomies later, when they still didn't have a clear margin, they accidentally discovered the other 1.8 cm tumor that was indeed Triple Negative Breast Cancer.

That's when I switched to Duke where I learned I would need a mastectomy and chemotherapy. There are no pink balloons at Duke.

I was lucky in that my lymph nodes weren't involved and chemo was not as bad as the horror stories I'd heard. My hair fell out exactly on schedule- two weeks after my first treatment. In fact, I was standing in the senior center, talking to a patient and twirling the end of a strand of hair when it just came out in my hand.

"Don't worry, honey," my patient said, eyes wide and clearly horrified. "Nobody saw and I won't tell a soul!"

I laughed because, well, what else can you do? "You get bitter or you get better." I heard that phrase when a convict was interviewed about his experience in prison but I think it applies to cancer just as well.

I went through the surgeries and chemotherapy in an almost numb haze. What else could I do? I needed to work. My daughter in law had leukemia; she was in way worse shape than I was. Besides, I'm the Mom. Moms don't lose their shit in ways they can't wipe away with a smile and a sniff.

Still there were times, and there are times, when it hits me. My grief is the dark, dank cellar of an old house. The place you don't want to go see as a child because that is where the monsters live. And I have monsters.

Cancer treatment ages you- and I think it's permanent.  I have arthritis now. My stamina has returned, but it seems to have reached a baseline well below my former norm. The same thing is true of my cognition- although it's steadily gaining ground. I am not the person I used to be.

I'm lopsided because I didn't want to do reconstruction, at least not until we knew whether I was going to be around for awhile. "And why bother?" I asked the surgeon. "I'll only look like a badly sewn football's been stuck on my chest." I'd seen the photos online. I'd read what others had to say about it. It's not me. Not yet.

So, I entered the land of prosthesis. A group of old ladies made me on of my originals, a "Knitted Knocker." I unwrapped the box and found two yellow and pale blue knitted, triangular shapes. Two minutes later, as I returned from tossing the box in the recyclable bin, I found my dog had already destroyed one of his new "toys." Then my first day back at work after surgery, the other one fell out on the floor of the restroom and was retrieved by one of my coworkers. "Um, is this yours?"

I've evolved onto other, more fitting blobs and bras but continue to struggle with their tendency to move on their own, creeping upward or sideways. It's not a boob, I tell myself, but it's not cancer either!

My hair is growing back but with "chemo curls" that give me an aging, Little Orphan Annie look. My hairdresser thinks they'll become the spiral curls I used to long for but I have my doubts.

And I am scared. Every day. Every time I have a twinge or get short of breath, I wonder, is it back? And what, if anything, can they do if it is? There isn't much for TNBC- but they assure me new drugs are popping up everywhere. "In five years, we'll have something," my oncologist assured me. And my neurotic self worries, do I have that much time? And my very most neurotic self worries that worrying about cancer will cause me to have more cancer because all the doctors tell me- you must avoid stress!

I don't eat red meat-mostly. I cut out alcohol-almost completely. I worry about the lowfat organic, grassfed yogurt I eat for lunch. I read that I shouldn't eat asparagus or eggs, and the list of do-nots goes on forever. But when I went through chemo and even sometimes now, I just eat plain old comfort food because it is  exactly that- a comfort.

I read everything I can get my hands on, but make sure it's a well-researched journal article or otherwise well-respected source. Then I bookmark the article and promptly forget 99% of what I've just read.

Still, there is the other side of me- the side that is profoundly grateful to be alive, the side that loves and savors more every kindness given, every moment spent with the ones I love, every new day and second of it. Part of me sees the humor in virtually all aspects of this journey. I'm not why-me-ing this because, I mean, why not me? 

It's just that on some moments of some days, the smiling face slips a bit and I taste grief in the back of my throat, rushing in like the tide.


Luther and Max- Farewell and Surrender

Sometimes I don't understand how a person can die and the world keeps turning. I understand, I truly do, that there are big losses. There is Orlando. Paris. 9/11. But today there is Luther- a small, wizened man who disappeared from this planet yesterday afternoon without anyone seeming to notice.

Luther's mother and grandmother were moon shiners and didn't seem to notice when he and his brother and sister played hookey beneath the bridge leading into town. They wiled away their days eating pilfered candy bars, roaming the abandoned houses and woods on the edge of their small town, playing hide and seek with the truant officer.

They were in and out of foster homes- a tiny band of loyal misfits- who in the waning days of childhood, turned to alcohol and cigarettes.

Luther married once, he told me. "But we never had sex. She left me after six months for a woman. I ain't had a girlfriend since. I think that's what I need- a woman."

But Luther never found love. Not in human form. The love of Luther's life was his cat, Max. The last time I saw Luther, he'd been placed in a nursing home for rehab after a near-death six week episode in the hospital. He looked at me, a frail memory of his smart-aleck self, and said "I feel sad."

"Why, Luther? Why sad?"
"Because it's all my fault I had to go to the hospital and leave Max. I shouldn't have fallen."

The aide who came Monday morning to help him get ready to go to the senior center found him lying unconscious on his kitchen floor, sick with pneumonia, dehydrated and near death.

"Luther, you didn't fall. You were sick. Don't you remember?"

But he didn't remember and he didn't believe me. He blamed himself for leaving Max alone. I tried to reassure him, told him that the staff at the center and his friends had all seen to Max, for months, and would continue to watch over the little, white spitfire until Luther's return. This encouraged Luther a bit but it was too little, too late.

Luther had one other love. After his stroke, he'd let drinking go but couldn't bring himself to imagine life without his four pack a day cigarette habit. Even after 6 weeks in ICU, Luther returned to cigarettes. Luther never was one for rules.

When the doctor told him he had to have his liquids thickened to prevent another life-threatening bout of pneumonia, Luther chose quality over quantity. When an aide offered to keep Max, Luther let go of the only tether holding him here. A week later, yesterday, he died.

His brother, wheelchair bound and barely able to make himself understood, broke the news. "My brother died," he said, "yesterday." His expression was flat, his tone a matter of fact reporting of the news. "I'm gonna get his house."

I rubbed his shoulder and murmured my numb condolences.

"Will you keep Max, too?" I asked.

He shook his head.

"Oh, that's right," I said. "I forgot, you have a little dog."

Bill shook his head. "No, I had to put him to sleep. He had a bad heart." Bill stared up at me for a moment. "I don't want anything else living. No dogs or cats or anything. I just want to be by myself."

I nodded and rubbed his shoulder again. "I understand," I said.

I found the social worker and the director under the social worker's desk, screwing a new computer attachment into the cheap particleboard. They smiled when I entered the room.

"Did Luther die?" I asked, not so much for confirmation as for a partner in sympathy.

The smile never faltered. "Yes," she said, still turning the screwdriver.

"Yes, he's dead," echoed the director, as he turned back to the task at hand.

"Poor Luther," I said softly to the backs beneath the desk. "I loved him."

It's not that they didn't care for Luther. We all loved Luther. He was funny and teased us mercilessly when he felt good. But in the medical community, where we lose more than we keep, we find our own ways of dealing with grief and goodbyes. They plug in computers and I talk to you.


Tuesdays at the Nursing Home- A Yellow Post-It Note Labeled "Bertha"

            I would like to think Heaven has walls.  Not a total enclosure but perhaps just an entryway to hold up the Pearly Gates. A firm buttress of granite held in place with mortar- because mortar is fallible and granite is not.  Mortar slowly erodes, like we humans do over time, only maybe Heaven’s crumbling wall could allow a few, bright beams of golden light to slip out, so those of us still waiting down here might have hope in times of darkness.
I'd also like to add a small pad of Post-It notes and a pen, lying on a wooden stand beside the wall. This is where you’d go to tag and store the pieces of your heart when they broke off. Here, between the rock and the bits of crumbling sand, you’d wedge your tender losses tight and walk away.
            Maybe goodbyes would be easier to take and love easier to give, if we knew for certain it was never wasted.  If our hurts and losses were named on folded squares of paper and basked in a golden light on one side, while keeping darkness at bay on the other, wouldn't we feel better?
            If this were true, I would walk up to the wall tonight, rip off a yellow square and write Bertha’s name in bold, red letters. “Here, God,” I’d say, shoving my note deep inside an especially shiny chink. “This it the part of me that didn’t want to let her go. The selfish bit that wanted more time to laugh and hold on and hear what it was like to grow up in the country almost 80 years ago.  Here’s the woman who helped me more than I ever helped her. Here’s a whole big wing of the house that is my heart.  I’d like to have it back someday. I’d like to have all the pieces back, along with a giant bottle of Gorilla Glue.”
            Bertha used to tell me “God’s not through with me yet. I’ll know when He is.” She worried her almost 50 year old son couldn’t take care of himself and that her husband wouldn’t live long without her.  She wanted to know her daughter’s cancer was in remission.  She wrote a hymn to comfort her family and made me promise to sing it at her funeral.  Bertha gave and gave and gave. 
            And while I know she had cancer, I prefer to think Bertha’s heart quit beating not because of sickness or old age but because she finally gave every piece of it away.



Crooked Halos

When I reach Bertha's hospital room, she's sleeping. A tiny figure in a big bed, hooked up to machines that blink and flash with each beat of her heart or intake of breath. I slip into a chair beside her and watch her lips purse into a small "O," then puff out soft, pillowy exhalations. It's not fair, I think. Not fair to have Stage IV Lung Cancer, with a tumor the size of a cantaloupe sitting on top of her heart, only to fall and fracture her pelvis- And all because she wanted a bit of macaroni salad before bed.

Her hair is growing back since they stopped the chemo. It sways in wiry, gray tufts like new grass atop a dying hill. I have known and loved this frail woman for what seems like an eternity but is only a few minutes of her lifespan. I made my entrance when the six children were raised and gone, the husband finally sober and the trailer as elderly as its inhabitants.

Two weeks ago she brought me a hymn she'd written and taught me to sing it. She sang it, she said, at her sister's funeral last year and at a granddaughter's funeral six years before that. She wanted me to write down the words and the music so it wouldn't be lost. We both knew why she wanted me to learn the song but neither of us mentioned it. We sat in my office and sang- her voice a creaky whisper and mine soft and faltering as I tried to match her melody note for note.

Today we were supposed to be learning a second hymn but instead the call came about her fall, so I found myself wandering through the long corridors of an unfamiliar hospital.

Bertha fell asleep with her glasses on, so when she wakes up, startled by the arrival of a dinner tray, her dark brown eyes are magnified pools of confusion and anxiety.

"Is something wrong?" She whispers.

Her aide and I assure her everything is fine. The aide tells her she fell asleep staring out the window at an approaching thunderstorm and slept right through the thunder and lightning. The aide is perky, young and cheerful. She wants Bertha to eat some of her all-liquid supper and bustles around peeling open lids on the soup and juices. Bertha pushes the containers aside and says "Wait a minute. I've got to see..." But she isn't looking at the food. Her gaze travels around the room. She looks up at me, then at the aide. "Is everything all right?" she asks.

I tell the aide we can manage without her, turn back to reassure my frightened friend and find her staring up at me, her brows furrowed.

"You're sure everything's all right?" She asks again.

I smile my most reassuring smile. "Yes, it's fine. You are fine. I mean, you broke your pelvis but you're okay."

Bertha nods, unconvinced. She's still scanning the room. When her eyes return to my face, she studies me for a long moment. "So, I'm okay," she says in a tentative whisper, "but am I dead? Is this...Heaven?"

She is no doubt disappointed to find Heaven has a 18" TV mounted on the wall above her head, playing a rerun of "Bones."

When I tell her no, she's not dead, her confusion doesn't entirely vanish.

"I'm sorry," she says, giving me an apologetic smile. "But I can't quite place who you are." She keeps looking behind me, like she's expecting someone or something to be standing there.

I give her my most reassuring smile and reintroduce myself, like I think it's completely normal to forget someone you've seen every week or two for four years.

"Oh!" she cries, suddenly clear. "Oh, I see you now!" She grabs my arm and pulls me down into a tight hug. "You must think I'm crazy!"

I tell her of course I don't, she's on a lot of pain medicine and was startled out of a deep sleep. She nods yes, this must be the case, but when she thinks I'm not looking, I see her craning to look at my back again. I turn and show her my backpack purse, still attached to my shoulders and she laughs so hard it ends in a spasm of coughing and choking. It's a full minute before she can speak again, her voice coming in short, breathy gasps.

"Oh, honey, here I thought you were telling me everything was all right because I was dead and you were an angel!"


Tuesdays at the Nursing Home- Family Tradition

His forearms are tanned, the kind of tan that's lifetime-lasting, the kind that comes of hard work done outside in all seasons. The tattoos are World War II vintage, faded navy blue and bleeding into the fine lines of his skin. He's 85, toothless and sitting ramrod straight in his high-backed wheelchair. He is my "just-one-more-please-if-you-could" before the holiday weekend sucks me out the door of the senior center. He's the new guy.

The social worker told me "He and his wife got into it and she says she's leaving him. She called up here cussing and yelling." Linda rolls her eyes. "Apparently it's not all her. We've had two aides quit cause he cussed them. He's given almost everybody a hard time. I haven't been on the receiving end yet but I'm sure it's coming." She gives me a "poor thing" smile and says. "He was really close to his daughter and she died of cancer a few months ago. She was his caregiver most of the time and he's having trouble adjusting I think."

I wheel him into a nearby office, slide my bag behind my chair and tell him, "No, really, I'm in no hurry. I wasn't going anywhere," because already his eyes are red-rimmed and he's twisting his hands nervously and...well, how could you leave him?

"They want to put me in a rest home," he says. "Me and my wife been together 86 years. We don't want to be separated."

I don't correct how many years they've been together because I'm sure it does feel like his entire life plus one.

"We fight and argue one day, make up the next. But they don't understand that here. My wife called 'em up and talked out of her head. She was just upset. We was fine the next day. It's always been like that.  She's tired. I bet she ain't slept a wink since my daughter died. She don't even try and sleep in the bed no more. She can't. She's on the couch in my son's room."

His son, it turns out is quadraplegic and living at home with John and his wife. "He was the kinda boy, if he was a driving down the road and seen an old person mowing, he'd stop his truck and go mow their lawn." John gives a short, disgusted snort. "I was mowing out near the road and the dang mower flipped over on top of me, still running, and people just rode on by. That's how folks is these days."

His eyes well up with tears as he tells me his son had a series of strokes that left him on life support. "When the doctors took him off of that tube, he just kept right on a breathin' and then he woke up. They wanted to put him in a nursing home but my wife said, "No you don't. Not my boy." And we brought him home. He's been there ever since. Thirty-seven years. That's why my wife sleeps on the couch. If he coughs he's gotta be suctioned right then or he'll die. She's the only one can do it now. When my daughter was living, she was helping but then she got sick."

He tells me about the pain she was in, the way she suffered but tried to keep going. "The doctors up at the hospital said the day she died they was a in there with her and the nurses and she was just a laughing and a cuttin' up with 'em and said they left for just a minute or two, walked back in and she was dead."

Tears are rolling down his cheeks. "Now it's just the three of us.  My wife gets short with me. Who could blame her? She's just tired." He leans toward me, his voice husky with tears and urgency. "Ma'am, please don't let them take me away. I can take care of myself. They send a boy to help me three mornings a week and I can take my own medicine. I told him, just roll me out the front door and I'll wait til the bus comes to get me. It won't be no more than a half hour. I can do that."

It takes me awhile but eventually I have all the pieces to realize there is an aide coming to bathe his son and help with his care three mornings a week, the same mornings John's new aide comes to get him ready to come to the senior center.  Their house is so small, John can't leave without going through the room where his son is. He doesn't want to compromise the small bit of privacy his son has left by rolling through the room with an aide in tow, so John wants his aide to roll him outside early and let him wait for the bus that comes to pick him up.

I imagine a house so small the only hallway is "four by five feet."

"He's a good boy," John says. "He lays in his bed and sings along with the radio. He knows all the old country songs. He's got a pretty voice. I mean, you can't understand the words but I know what he's sayin'." He is pleading with me to understand. "I can't leave my wife. We've never been apart except a few times when she left cause I was drinkin' and a runnin' around like men do before they settle down. But we love each other. She can't take care of that boy all by herself. If they'd a let me in that room over yonder," he says nodding toward the physical therapy suite, "I could get on that bicycle they have where they can strap your legs in so they stay put and I told that doctor woman I know I could get stronger. Maybe I could even walk one day. And my arm will get stronger, so see, I can take care of myself."

I tell him not to worry, that I understand his wife doesn't really want him gone and that I will talk to "them." He apologizes for being hard to understand but says "They're getting me some new teeth and the dentist said I'll be able to talk real good then. He says I'll look like normal."

I think about the tiny house and the woman struggling to keep from losing another child and the man fighting to keep his world from blowing apart and I tell him I understand every word he's said.


Tuesdays at the Nursing Home- Stage Notes

Bertha is dying. Full-on, Hospice dying or as she calls it, "Transitioning."
“Whenever I call one of my relatives to tell them I got lung cancer, they want to know what stage am I in.” She shakes her head softly and waits  for the small, portable tank at her side to pump enough super-oxygenated air into her lungs to make another sentence. “Finally, I got so sick of it, when the next one asked I said, ‘What stage am I in? Why, all the world’s a stage, honey. We’re all just a playin’ on it!'” 
She chuckles at her own joke, then lifts her tiny, bird bone shoulders in an understanding shrug. “I shouldn't a done that. They only want to know so they can plan when to take off work to come to my funeral, that’s all.  And I can't tell them that answer. Nobody can. All I know is, it’s not time yet.”