Unprepared

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IMG_1264Before walking became a “cool” exercise, my parents were all about going walking. I remember summer evenings marching around our huge back yard with Mom, Dad, and my brother for several laps multiple days every week. One evening my brother wanted to race from the very back of the yard to the back of the house. The four of us started to run, but Mom and I almost immediately fell behind. My chubby self has never been a runner, and Mom will quickly tell you that birthing two children dashed any hope of being able to run without piddling on herself.

My brother had a comfortable second place spot, but Dad totally schooled him on how far he had to go to catch up to his speed. His arms and legs blurred together as they dashed through the muggy summer air. The Six Million Dollar Man had nothing on him; the only thing missing was the bionic sound effect.

The memory played through my head as I sat by his bed in CCU and held his hand last Saturday night into Sunday morning, after the nurses told us he probably wouldn’t make it through the night. A breathing machine pumped oxygen into his lungs and multiple IV bags fed him a concoction of three antibiotics, fluids, sugar water and blood pressure medicine. What had started as a urinary tract infection Monday led to pneumonia by the end of the week, and his body, run down by months of chemo treatments and ten days of radiation for lymphoma, could no longer fight off what was going on. 

The running joke in the family. Dad could drift off to sleep just about anywhere.

The running joke in the family. Dad could drift off to sleep just about anywhere.

We were all struck dumb. How could he have gone from sitting up in a chair three days before to not being able to make it through the night? This man mowed an acre-and-a-half lawn a couple of days after his first chemo treatment. This man once rebuilt a VW bug engine and almost single-handedly lowered it back into the vehicle. This man once beat all the bigger high school football players with the most pull-ups.

All the tests had showed that the cancer was not making major advances in his body. How could he suddenly be not strong enough to fight? Why was his body giving up now? There was supposed to be more time. The treatments were maintaining the cancer. We knew a day would come when they would not be effective, and then we would talk about Hospice and pain management and DNRs and living wills.

We were unprepared for this.

We had to make the decision to disconnect the breathing machine and IVs. Once the tubes were removed, he was physically gone in a couple of minutes. I continued to sit and hold his hand while other family members came in to say good-bye. Part of me wanted to run — out of the CCU, out of the hospital, across the streets of downtown Greenville. I wanted to run and scream  and cry in anger, in confusion, in shock, but I stayed because running away meant letting go of his hand. The hands that repaired hundreds of printing presses and copiers over a 40-year career, fixed at least a couple dozen cars on weekends, put together a short-wave radio for my seventh-grade science project, built a two-car garage and a back porch sunroom, carried the heavy stuff into my dorm room in Columbia during the miserable days of August. He was a man who worked with his hands and was more interested in action than words.

IMG_0923When I came home from college on weekends, I liked to rent movies to watch on Friday night, and being the English major, I often picked the introspective ones. I remember him getting up from the den one night during a movie (don’t remember which one) and saying, “They talk too much in this movie, Carla.”

In his CCU room, discussions took place about how the mortuary would arrive in a half-hour to take him. Mom eventually asked if I was ready to go, but I shook my head. “I don’t want to leave him,” I said, and then I broke down, repeating the same sentence over and over.

Other family members left, but I was unaware of their absence. Four of us were left there with Dad — Mom, my brother, The Husband, and me. Somehow I found the will to stand and, after a few more minutes, let go of his hand. When I did, I knew I had to walk out of the room and not look back. Exiting the hospital and riding home still feels like a blur — perhaps from shock and perhaps also from fatigue since it was after 2 a.m. on Sunday morning.

We got home around 3 a.m., and because I knew some friends on Facebook would ask, I typed the only words I could manage at that moment: “Dad’s gone.”

I’ve always heard the statement: “We pay our respects for those who are left behind.” I’ve probably said the same thing myself a few times, but I never really comprehended the importance until this past week. From my aunt, uncle, and cousins who came to the hospital Saturday night and stayed until after the unthinkable happened to all the family and friends who came to my parents’ house in the days that followed.

I remain blown away by the thoughtfulness and support. My mom’s office shut down Tuesday afternoon and every one of her coworkers came to the funeral. My college roommate drove two hours from Camden. Another former coworker and close friend drove down from Charlotte. One of my brother’s best friends drove up from Charleston, twice — for the weekend where Dad took his downward spiral and then the funeral. The Husband’s boss and two other coworkers came. I simply can’t express my appreciation enough for all who have done so much to bring us comfort. My gratefulness knows no bounds.

IMG_2690This next stage of our lives is one huge question mark. It is still unfathomable to think that when I come up my parents’ driveway, Dad won’t be stepping out of the garage, sitting on the porch, or rocking in his glider in the den when I open the door. He will not be there at Christmas to say his line: “Before we know it, it’ll be the Fourth on July.” And on the Fourth of July, he won’t be there to say, “Before we know it, it’ll be Christmas.”

However, I do know that we are a close family and a strong family. We have amazing friends and loved ones, and no matter what the next days, weeks, months, and years bring, we will get through with their help and with God’s grace.

Marco Polo and Cancer Can Bite Me

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Until I was around 14 or so, my family and my dad’s sister’s family (including her parents-in-law) went to North Myrtle Beach together during the third week of July every summer. When they were in high school, my older cousins each brought a friend as well, so I remember several years when there were 13 to 15 of us in a three bedroom condo.

Every morning the living room was a minefield of air mattresses and snoring teenagers, and to this day, these weeks remain my favorite vacations ever. They’re probably the reason why I feel like a road trip feels incomplete without at least five or six people with me.

swimming poolDuring these beach trips, my brother and I spent the majority of our days submerged in chlorinated water until our skin shriveled to the point where even a prune would be like, “Damn…” Attempts to keep us properly sunscreened proved futile, and our fair, freckled skin turned angry pink in just the first day. Eventually, mine settled into a reddish brown with extra freckles.

Sometimes we’d see other kids in the pool playing Marco Polo — a game that never interested me. Who wants to be the one kid standing alone, eyes closed, flailing about in desperation to tag someone else who stays just out of reach and then disappears only to pop up again behind him or beside him?

Just don’t get tagged, you might say. But sometimes you slip up. Perhaps you lose your footing on the bottom of the pool and fall within reach. Perhaps the “Marco” ends up being faster than you. Sometimes, getting tagged is just a matter of time.

I find the game as sick and twisted as Dad’s lymphoma. At the beginning of January, the doctors sent out all their Marco calls in the form of scans and tests and nothing answered, so they said Dad was in remission — except there was this pain that had started in his hip, like his sciatic nerve had started acting up.

Then the pain was in his back, and last Friday he ended up in the ER with a bunch of jackasses who had less compassion than a drill sergeant. Dad had an MRI, and despite not having done a spinal tap yet, one of the a-hole doctors swaggered over to him announced that the lymphoma had moved to his spine.

Unfortunately, the spinal tap did show lymphoma in his central nervous system, in the blood-bone barrier — a hiding place that would not have shown up on any scan or bone marrow test. Polo

The Leukemia and Lymphoma society predicted that almost 70,000 Americans would be diagnosed with non-Hodgkins lymphoma in 2013. For ease of math, (which I’ll still be doing with a calculator because… English major) we’ll say 70,000. Of those 70,000, five to ten percent will receive a diagnosis of mantle cell lymphoma, the type of lymphoma Dad has. Some statistics say it’s closer to four to six percent, but let’s be generous and say it’s ten percent.

Then 7,000 people should have gotten the mantle cell lymphoma diagnosis. Of these 7,000, LESS THAN FOUR PERCENT of them will have their lymphoma move to their central nervous system. We’ll be generous again and give it an even four percent calculation, which equals 280. Two hundred and eighty people will wind up with their lymphoma moving to their central nervous system, and Dad is one of them. How sick and twisted is that?

If my advanced math skills hadn’t vanished after my first semester of college or if I had the patience, I might try and figure what the odds of this occurrence would be, but I’m not attempting those calculations because they don’t do anything to change our new reality.

The new reality is that he has to have weekly chemo shots into his spine along with a daily dose of a new drug approved by the FDA in November. The new reality is that the doctor is not as optimistic about remission; however, this new drug in its trials reduced or eradicated the cancer in 66 percent of the participants.

While we knew the chance of relapse was present, we hoped that we’d have more time to enjoy the good news. Instead, the road has narrowed and lengthened and developed potholes that make this nightmare of a journey tougher to handle.

However, Thursday morning as I sat and listened to the TV on ESPN at work, I heard Curt Schilling’s statement regarding his cancer announcement, and despite talk of him being the occasional a-hole himself1, I found comfort in the following statement:

Tough times don’t last, tough people do.

And if there’s anyone who’s tough enough to outlast this lymphoma (or a rousing game of Marco Polo), it’s my dad.

1 — With the exception of the Atlanta Braves in the early ’90s, I’ve never been a huge MLB follower.

Before and After

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Inevitably, we all divide our lives into time periods — when we were in school and when we were out of school, or our single years and our married years, or before we became parents and after we became parents. The Husband refers to his single years as “BC”, Before Carla. I refer to mine as “blissful”. (Kidding!)

In this long, lousy, hellacious week since finding out about Dad’s lymphoma — which was one of a few craptastic things that fate decided to pile on — I’ve come to realize that these seven days of suck will border two more periods of our lives — before Dad’s cancer and after.

Before are those wonderfully ignorant decades of planting a kiss on his cheek in the carpool line before bolting out of the car and into school, greeting him with a hug when he came to pick us up from Aggie’s house and breathing in the faint scent of aftershave mixed with the smell of his car’s interior, and having our very own McGuyver of automobiles.

Seriously, The Husband and I once had a Buick, and one morning we went out to the car to find that one of the back windows dropped halfway down and would not go back up (the joys of power windows). Dad took part of a binder clip and rigged the window to stay up — prompting The Husband’s statement, “Your dad scares me.”

Now we think in terms of scans and tests and treatments and survival rates, and I know we’re not the first to experience the presence of cancer. We also won’t be the last. I get that no one gets out of here alive and that life definitely is NOT fair, but for us, for my family, we are changed.

Before cancer... November 2008

Before cancer… November 2008

Hearing the diagnosis peels back those healthy, happy layers and exposes nerves and fears and worries. The thought of gut-wrenching treatments merely dumps a truckload of salt on those raw emotions and hurts us all the more. Right now, a way back to that happiness is not visible, and it’s not that I believe we’ll never be happy again. I’m not all doom and gloom, but I’m grounded enough to realize that this moment, when compared to last Monday night, is different.

And so July 22, 2013, will always be Before Cancer, and July 23, 2013, will mark After Cancer.

Whew, dodged that bullet! Hey, is that a bazooka?

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You didn’t think I had stopped looking for the combat boot, did you? I explained all that. I’m no rookie.

Six weeks after Mom’s surgery and our collective sighs of relief that she did not have ovarian cancer, Dad has now been diagnosed with non-Hodgkins lymphoma. Some of you may know there is no surgery available for lymphoma — no procedure where doctors can just go SNIP! it’s gone! Here’s a Band-Aid and a bit of chemo/radiation and have a nice life.

Yes, I’m exaggerating, but you’ve got to admit, some cancers — when caught early as a lump or tumor — require surgery and sometimes that’s it. My grandmother had stage 1 breast cancer in her 70s. She had a mastectomy so she wouldn’t have to have chemo or radiation, and she took a pill for the next several years until her doctor said, “Hey! You’re still cancer free, so drop those pills and enjoy the rest of your golden years.”

Then there are those cancers like my dad’s that lurk like a lunch container you left lying under your car seat — a container that had tuna salad, no less. Eventually, you know something is wrong, but when you finally find it, the whole car is ruined by the smell.

Not that anything is ruined. No one has mentioned the word “terminal”. The doctor said he’s thinking in terms of years — not weeks or months. He also said there’s a chance the treatment could send it into remission. The challenge will be keeping the family’s Negative Nathan from giving in to his feelings of doom. Someone has to go to doctor appointments with him because he will cherry pick every negative thing said and piece it into a comfy quilt for the death bed he believes is coming.

Quiet and thinking... It's a dangerous combination for him

Quiet and thinking… It’s a dangerous combination for him.

So far, my mom has said she will not print any research off the internet for him, but it’s not that I worry about. See, he’ll get to talking to people, and, inevitably, he’ll start hearing someone’s horror story. In this case, it’ll concern chemo treatments — because he’s convinced they’ll do everything short of killing him. In 1998, he had open heart surgery at age 57. A week before the procedure, he came home ready to call the doctor and cancel it because of one bad thing that happened to one person.

You know how some people play jokes by putting a “kick me” sign on another’s back? I want to put one on his back that says, “Don’t tell me your medical nightmare stories.” Maybe add in smaller print: “Or my family will hunt you down and kill you.”

I send this warning to anyone who knows him: If you tell him some horror story — if I find out that you are filling his head with anything other than words of prayer, light, encouragement, or positivity — I will find you. And you will pay.