Far Past Agony: Reason for Rejoicing

“But what could you do? Only keep going. People kept going; they had been doing it for thousands of years. You took the kindness offered, letting it seep as far in as it could go, and the remaining dark crevices you carried around with you, knowing that over time, they might change into something almost bearable.” –Elizabeth Strout in Amy and Isabelle

On a March day in 2001, as our pastor stood in our driveway, Greg and I put seven-year-old April and fifteen-month-old Abby in our secondhand Ford Windstar and set out for Seattle, Washington. I was thirty and confident–full of love for my family and faith in God. I’d done my research–nationally, Seattle Cancer Care Alliance had the highest survival rate for the bone marrow transplant Greg needed for his leukemia. We would see the country on our nine-day drive, easing our transition from a normal couple to our roles of patient and caregiver.

It was when we crossed the Ohio River that I felt the reality shift–the fact that this was a life-altering experience for our family, and it couldn’t masquerade as a little cross-country jaunt. I drove over a big metal bridge, and then I drove across America, and, sure, we saw Mount Rushmore and the St. Louis Arch and flew in a seaplane over Pocatello, Idaho, and marveled at much, but we also spent months watching 21 people die. 21 mothers, fathers, and young children.

Twice, we were the first to comfort the freshly widowed. As they wailed, Abby toddled past, whispering, “Heart’s broken? Heart’s broken,” and patting them with her chubby hands.

Greg and I said good-bye to our marriage with its traditional gender roles and warm affection. The “casualities of caregiving” were tremendous–from the financial and romantic to the mundane: initially, Greg had little energy to participate in the family life he’d fought hard to save. We remained consciously grateful because, after all, Greg was one of a literal handful to emerge alive–there are four remaining survivors from our 2001 summer crew.

Greg never embraced the role of “cancer survivor”–never did a survivor’s lap at “Light the Night,”didn’t celebrate his transplant anniversary as his “second birthday,” didn’t write his anonymous donor yearly. He just quietly went on with life. With normalcy.

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Seattle, after a decade, began to feel reasonably far away. Throughout the transplant process, I had claimed Job 11:16, “You will forget your trouble, recalling it only as waters gone by.” (Note to the über-Christians: I realize that Real Christians aren’t supposed to claim anything from Job, that it’s just men talking. But the verse helped me.)

And it seemed the waters had gone by.

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I spent the summer of 2011 in a hospital bed in our den with a badly broken leg. On our twentieth anniversary trip to Las Vegas, I’d fallen while hiking in Red Rock Canyon, resulting in a perfect compound maisonneuve fracture that orthopedists screeched delightedly over. Our den was turned into a hospital room, complete with a potty chair at my bedside. (When Greg good-humoredly yelled, “Code Yellow!” the girls ran to hide.)

In August, Greg had a spot in his mouth that hurt, and even in though I was in a wheelchair, getting it checked became a top priority; in Seattle, they trained patients and caregivers to be hyper-vigilant regarding mouth sores and skin changes. We went to an oral surgeon in Jacksonville for a biopsy, and he assured us that he would call Thursday by 5:00 if it was bad news.

Thursday found Greg and I lying together in my hospital bed watching David Letterman and joking around. I said, “Hey, it’s almost 5:00 and the doctor hasn’t called. I’d like to congratulate you on not having cancer.”

And with that, the phone rang.

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Greg was diagnosed with Oral Squamous Cell Carcinoma, which affects 1 in 500 bone marrow transplant survivors and is caused by the TBI that the bone marrow transplant regimen requires. He was told he would need part of his jaw removed; that he would need a neck dissection and radiation.  He drove to Douglas to a store-front church where the pastor had a reputation for the gift of healing. They said a simple prayer together, and Greg came back and told me he wouldn’t be having a neck dissection–that I needed to let the surgeon know he no longer need it.

The next day, we went to the hospital. Greg was somewhere being prepped for surgery when I ran into the surgeon at the elevators. I knew he spent his vacations as a Christian missionary; he nodded, unfazed, when I said, “Greg believes he has been healed and won’t need the neck dissection.”

Later that morning, the doctor came to tell me, “The tumor is less angry . . . he won’t need the dissection.”

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Those people, the people we were in 2011, they were still nice, kind, and warm-hearted. They were even reasonably hopeful. On September 29, 2011, the date of Greg’s  jaw removal, my Facebook status read, “D-day!!! Expecting good things!”

I read those words and marvel.

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I did not go with my husband to any doctor appointments in January. I did not drive him home from the biopsy appointment. I was not there to hear the words, “You have cancer.”

I was 81.3 miles away. I got a text.

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This third cancer is different. We are starting from a place far past agony. There is nowhere to plunge–there’s no nearby cliff’s edge, no tied knots, no knuckled fists clenching stubbornly to bent branches.

Myself, well, I don’t know if I am shattered at the bottom of the cliff or on a ledge under the initial fall, but I do know that I am no longer in a mode where “I must hang on” is a thought.

There’s just me over here, and him over there.

And there’s cancer.

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Isaiah 30:15 says, “In quietness and confidence shall be your strength.” The Message puts it like this: “Your strength will come from settling down in complete dependence on me.”

The twenty-two days waiting for surgery have been awful and long, but that verse hasn’t left me.

Last night, Greg wrote on Facebook, ” Right now it is nearly impossible to see how we could ever recover from this and live a life that would pass for normal.”

But then he added, “If there was ever a situation where we could see the hand of God move to do great things this would be it.”

Selah.

I am over here, and he is over there, and there’s cancer, but there is also the hand of God.

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

I 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.

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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.

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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.”

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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.

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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.”

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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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