October 24, 2018
For seventeen years, we have lived with aftermath. 2000’s discovery of my husband’s chronic myelogenous leukemia; 2001’s allogeneic bone marrow transplant with total body irradiation; 2013’s oral squamous cell carcinoma and mandibulectomy, and 2018’s lymphadenectomy and skin grafts–six separate surgeries in one: cancer was cut out of his mouth, and skin from his arm was sewn back in its place. (And cataract removals too.)
There are never complaints. There is no, “Why me?” He is, and ever will be, stoic.
Today, Greg and I went to work for half a day. We gave the PSAT, then ran by Captain D’s and headed down to Jacksonville to Shands. We spent the trip wavering between terror and certainty that he would get cancer diagnosis #4–adjacent to the site of his skin graft in his mouth was a white area that the doctor thought was leukoplakia, which is often precancerous. For a month, he had been watching the spot. I had looked at it twice–the second time, noticing how close it was to the bend where his lips connect, realizing how much of his face would be gone.
I didn’t ask to look again.
I don’t think you can quantify that type of terror, but I want to: I want to capture it, to help you see it, to try to make you understand what it is like to be presented again and again with horror and terror and heartbreak and yet not be destroyed.
I think that there is something to be said for also quantifying the terror, for the full report, because when you say, “We thought we were certainly destroyed,” and you lay out the thoughts, the expectations for destruction, then the fact of the rescue is that much more powerful.
That is, for me, the great truth, the greatest mercy: the fact that we are not destroyed. That Christianity reveals, again and again, survival, perseverant faith–faith that is not of us, is not naturally within us, but is, truly, a supernatural gift of God.
Nurses empty the lobby of an oral maxillofacial surgeon’s office quickly so that the patients don’t have to look at each other for long. People with half of their faces removed, slitted mouths, oozing sores, tracheotomies. The first time we went, I was terrified, me with my normal-faced husband, thinking he would turn into that. Today, on the drive to the hospital, I was fairly certain we were advancing on the road to that, and I knew I had nothing in me–nothing at all–that would power me through the horror once again.
We made the first twenty miles of the trip talking about the quality of Captain D’s catfish–because it is mighty tasty–and our students and the news. We talked about our girls and the pets. We filled the car with chatter, only occasionally asking a “what if” question–opening and shutting that Pandora’s box with which we live.
The last miles, when we’d left the highway and were passing dilapidated houses and abandoned buildings, were the most serious–where, for a moment, we dared to say the word “terrifying” and think the unthinkable. We went “there” thirty seconds, maybe less, before regaining our resolve.
And then, the news: hyperkeratosis, a callous-like thickening of skin. Not leukoplakia. Not cancer.
July 18, 2019
My husband and I were tired, physically and emotionally. We woke at 4:40 and drove ninety minutes to the hospital where he would soon have his “horrible” mitral valve repaired. He needed a transesophageal echo (TEE) and a heart cath–procedures he’d had five years ago, almost to the day.
We were so much less weary then.
On our way, there was not a lot of chatter in the car–but neither was there fear or sorrow. There wasn’t even, anymore, a sense of injustice. (Certainly, there is not acceptance, but there are no longer howls and raised fists.) There is, after nineteen years, not any energy for that. We listened to Christian music for the last half hour of the drive, and as we neared the hospital, I offered a wry, “At least we have unshakeable faith,” and he agreed.
The tests completed, eleven long hours later, we went to 13 Gypsies, a tapas restaurant with so few tables that Greg was immediately worried about their profitability. We weren’t celebrating, exactly, because the TEE, according to the administering physician, revealed the “worst mitral valve prolapse I’ve ever seen,” so we knew surgery was imminent. But we were encouraged because the cardiologist said the surgery would not be invasive–that Greg’s chest wouldn’t be cut open eight inches, that another huge scar wouldn’t be added to the Hickman’s “bullet marks,” his left arm’s “shark bite,” or the slit of his throat so expertly hidden in the folds of his chin.
We were hopeful. We ate cod and corn and thought about the promise of small scars.
July 22, 2019
Because we hadn’t heard from them, I’d called the cardiothoracic surgeon’s office on Friday just before noon only to be told that, because of a snafu at the hospital, they had not seen his chart, and they certainly hadn’t scheduled his surgery–in fact, we had to come in. I had begged them to work us in quickly, jokingly offering cinnamon rolls as an incentive.
They scheduled him for Monday. We talked some on the drive down, hopeful that he could perhaps have surgery the very next day–to spend summer “free days” in the hospital would save some of his nine precious sick days. We were hopeful that we could get this behind us quickly.
We walked into the surgeon’s office with sixteen still-warm cream-cheese-frosted cinnamon rolls. The people in the waiting room went wild; the receptionists were equally enthusiastic. Things were fine. We were fine.
When we were shown into a room, we started planning our afternoon–we were going to head right back home after the appointment. Then the surgeon came in, gave us quick handshakes and then started talking about the terribly dangerous “worst case scenario” surgery that Greg would need.
We were too blindsided to even be confused. No cancer diagnosis had stunned us more. The surgeon kept talking. Greg had mitral annulus calcification, essentially rock in his heart. The surgery would be very difficult because of the location and the fact that even the best surgeons can’t sew into rock.
Then, the stunner: he told us that during the surgery, Greg’s heart could “break in half.”
He said those words to us.
I can’t even begin to describe what hearing those words was like, the horror.
We just looked at each other from across the room. My mind was still, shocked and silent. My body wanted to flail and thrash, to hit and to strike.
The first doctor had lied to us. The news was so bad, he just couldn’t tell us. (This happened, too, with Greg’s leukemia diagnosis–the on-call resident could not break the news while seven-month-old Abby babbled from her stroller beside Greg’s hospital bed.)
The surgeon was confident–he could do it–but he was also ethical. He told us to get a second opinion at a tertiary center–Emory or The Cleveland Clinic.
If Greg could die on the table, he should get to choose which table.
We staggered out into the waiting room and back to the car.
Reeling. Reeling. Reeling.
Greg realized he had left his water bottle–his favorite water bottle–so he went back to get it, giving us a few minutes apart to try to sort the landslide of emotions and fear, to stanch the anger. So much anger: the doctor had lied.
Too, hadn’t Greg endured enough??? Hadn’t we all???
One consolation of a long, trauma-filled marriage is that there is even a routine for the awful.
We go to Red Lobster.
Phone calls filled the drive over. Canceling out the calls of relieved news just four days before, this time we painted dark gray pictures, but did not repeat the surgeon’s words–we did not repeat them even to each other. We called both our girls, who met the news with typical resilience, unemotional but loving. Then Greg’s father and sisters.
At Red Lobster, I asked for a non-perky waitress; they sat us in a corner and brought us warm biscuits, and we ate them.
We are still good at these things: breaking bread and marching forth.
We can no longer comfort each other; it would be a lie to say that we can even comfort our children.
Early in the summer, Abby had been invited to weekend with a college friend at her home–a place she had never been. They would kayak.
Four days after the heart news, I drove Ab to Middle Georgia, through watermelon fields and big sky, to a home on Lake Blackshear. We were greeted by exuberant dogs, fed pizza, and given cold Dr. Pepper. I left her there, happily distracted by strangers.
Days later, when Abby returned, her eyes shone. The whole family was so nice. She marveled.
She stood in her bathroom, taking off her make up, telling me, “The dad got in the pool, Mom . . . he got on the beanbag with ——‘s sister–it was a big beanbag, and he just plopped down with her. He just plopped.”
She went on, her voice high and happy, “And the Mom, she was the nicest person. She was super chill. She never got mad. The girls would be like, we are sorry our mom is so tense, and I was like, ‘What are you even talking about?’ Mom, she was so relaxed.”
Glancing over, she stopped herself apologetically. “She was what you would have been if none of this had happened. If you hadn’t been through so much.”
It is one of the sorrows of my life–that this daughter, an infant when everything began, will never know us as we were, before all this. When we were joyous, relaxed, and, on some days, very close to happy.
She has never known our family to be this.
But, like ours, her spine is steel. We are warriors, all.
There must be value in that.
It is sometimes my only prayer: Please, let there be value in that.
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