Wednesday, February 1, 2012

The Unwelcome Stranger--A Story of Cancer

Young, athletic, cross-country coach, middle school science teacher, referee, Mariners fan, dad.

 It was late spring 1989 and my father was 39 years-old—still rising to the peak of his life.  No one expected anything different from him.  He was the handsome, idyllic leader of a happy family living on the Olympic Peninsula.  Our well-kept lawn framed a beautiful vegetable garden, carefully weeded and loved, teeming with vines and blossoms that would become dinner all winter long.
Baseball season had just begun and, outside of his family, Dad loved nothing more than to watch his beloved team attempt not to lose a game.  In those days, we didn’t win much, but there was no team with more heart than ours.  We had a new pitcher, Randy Johnson, and although we didn’t know much about him, he was tall and people remembered us for that.
That spring, Dad started having trouble breathing.  He had always been a healthy guy and proactive about going in for check-ups, teeth cleaning, eye exams, and the occasional mole-removal.  But this was something new, or rather, very old.  He hadn’t experienced breathing difficulties since his days as a child in central Montana, when his lungs gave up after thirty degrees below zero.  No, this wasn’t the same.  It might have been a cold, or the flu, but he didn’t feel sick, and as week after week went by, nothing seemed to change. 
I remember that day, driving the old Ford pickup with Dad and sister to the hospital.  He assured us that the x-ray would show that he had something called “pneumonia.”  This, he explained, would be gone before we knew if, after only a few rounds of medicine.  So, we played in the waiting room, reading each other funny stories, eating carrot sticks, and molding things out of our colored modeling clay.  When he finished, Dad came and got us, still smiling, but worry-lines that I hadn’t seen before creased around his forehead and the corners of his eyes.
We went to the movie store that night—a very special treat, as Mom was one of those “kill your TV” crusaders.  With popcorn and grape pop in hand, we sat down to “The Adventures of Baron Munchausen” while Dad and Mom quietly talked in the bedroom.  If we had been listening, we would have heard Mom’s soft sobs while Dad rubbed her back and reassured her, or tried to, that everything would be just fine.  He had been diagnosed with “Non-Hodgkin’s Lymphoma,”—cancer of his lymphatic system—and had an inoperable, softball-sized tumor settled between his lungs and heart, pushing them out of the way. 
Over the next few days, things moved very quickly.  Grandma came from Montana to stay with us while Mom and Dad visited the Virginia Mason Hospital in Seattle in order to develop a treatment plan.  Little did we all know, but Grandpa would be diagnosed with stomach cancer only a few weeks later.  Still, at this point my sister and I knew nothing and were just pleased to have Grandma there as yet another special treat.  To us, life was improving daily.  We had never had so much junk food, TV time, or fun visitors in all our lives, and we had a hunch that gifts were just around the corner. 
Mom and Dad came home the next day, looking tired, especially Dad.  His face was a little green, and he wouldn’t eat much but he still had his big bear hugs for both of us.  Then, with Grandma and Mom in the room, he sat us both down and explained everything that was going on.  He left nothing out, because he knew we had strength enough to handle it, but he worded everything as gently as a child’s heart could understand.  We knew the word “cancer,” from library books and the news, but we knew nothing of chemotherapy, tumors, or the lymphatic system.  Then he unbuttoned his shirt.  On his chest, just above his heart was a long scar, stitched shut—maybe the size of my hand. 
“Did they take out the cancer, Dad?” I asked.  He shook his head and explained that if they took out his tumor, his heart and his lungs might get hurt.  So the doctor opened him up, took a good look, and sewed him shut.  It all seemed a little silly to me to have an operation that accomplished nothing.  But, I supposed, there is only so much one can see from a fuzzy x-ray, and there is nothing quite like the real thing.  While I felt scared, I was also very interested in the medicine of it all.  I liked the idea of looking inside someone’s chest and seeing a world I knew only from the World Book Encyclopedia.  Still, I didn’t think I would ever like to look inside my Dad’s chest.  There are some places even the most inquisitive mind won’t go.
Spring turned into summer, and Dad’s cancer treatment was in full swing.  Almost overnight, the symptoms started.  Normal canker sores turned into ten, then twenty, and thrush spread throughout his mouth, making it impossible to eat and even harder to talk.  But even thrush couldn’t affect his smile.  One night, I woke up with the flu and ran for the toilet, expecting to be alone in my misery.  There was my dad, hunched and sweating, pale and tired, sitting where I should have been.  I could handle it.  I had thrown up plenty of times in my life, but this was something that I didn’t want my dad to handle.  He didn’t need to be there.  He didn’t need to feel sick. I could do it for him.  So we sat there all night long, one at the toilet, and one with a bucket, and kept a tally sheet of who did it the most.  Funny, how even in our worst moments, the Leinart competitiveness and love of the game came through, and we actually enjoyed ourselves.  Or at least Dad made it seem like fun, though I don’t know how he truly felt. 
Though tired and weak, Dad never let life change much.  We still went to the movies, walked on the waterfront trail, fed the horses around the corner from our house, and spent plenty of time at the library.  And when Mom’s back was turned, we even got to go to the gas station for corn dogs on Saturday—something her wheat germ-loving soul would never have tolerated.  And Dad, tired and pale, never missed a day of school.  He scheduled all of his treatments to be either in the evenings or on the weekends, so that he would be fresh for his students, to teach them the Punnett square and poke his finger for blood-sample slides under the microscope. 
Symptoms, though awful, were tolerable.  But maybe I’m wrong, because we were not the ones that “tolerated” them.  Dad got thrush, Dad gained weight from his steroids, Dad threw up, Dad got tired and sweat through his sheets every night.  It was not us who was “tolerating” anything.  But we felt that we were.  We honestly thought that we had all the symptoms along with him and were there as a team.  And, I suppose, that’s the way it has to be if a family can survive cancer.   But one morning, it got to be too much for me.  Dad had gone off to school in his usual routine, and Mom called me into the bedroom.  She was changing the sheets—as she now did daily—and pulled out a lint brush, handing it to me.  I looked at the pillows; and there in the crease where my dad’s head had been, was a handful of hair.  Dad had explained that this would happen, but it had been several months, and his dark brown hair and mustache that made him look like Magnum PI, had remained thick and full on his head.  I thought maybe we had dodged a bullet, and no one, outside of our family, would ever need to know that Dad was sick.  I couldn’t handle it if people teased him.  After all, when Josh Butler got leukemia and lost all of his hair, kids started asking a lot of questions.  I never asked him a single one.  I knew that he felt sick, and tired, and just like my dad.  I left Josh alone.  But this morning, Dad’s hair had begun to fall out.  There was the evidence right in front of me, and I was being asked to nonchalantly wipe it up.  Seriously?  Just like that?  But I did it.  I didn’t let the tears fall because Mom had to be strong, so I did too.  Only my teddy bear saw my tears, and it was soaked through.
Though I read books, I never really understood “cancer.”  After all, from what Dr. Widen had told me, each cancer had its own name.  There was leukemia, lymphoma, melanoma, neuroblastoma, and on and on.  So what was this “cancer?”  Is it like calling the food we eat “supper,” when it could be meatloaf, grilled cheese sandwiches, or tuna noodle casserole?   Or was it like music?  We listened to classical, big-band, folk, and rock and roll at our house, but I suppose they are all “music.”  Still, I couldn’t wrap my head around the individual diagnoses of the term “cancer.”  At seven years-old, there is only so much your brain can do.  That being said, I didn’t understand.  All the books I had read were either too dumbed-down to a child’s level and spoke of things like “when a flower gets sick, the sun and rain make it better,” or were so full of adult medical jargon that I had too many questions and my poor mom didn’t know the answers.  Of Keets and Shakespeare she could answer anything; but of this, she didn’t know much.  So, over time, I developed my own, misinformed theories, the worst of which devastated my dad. 
Growing up, I had always been “daddy’s little girl.”  For whatever reason, I shunned dresses, dolls, and the color pink, in order to play in the mud and do anything that my dad did.  He and I were inseparable from my birth, and the only time we spent apart was while he was at work.  Even then, at three or four years-old, I would miss him terribly, so Mom would rub Old Spice on a pillowcase and I would carry it around all day to remind me of him.  He took me on class field trips, to his Kiwanis meetings early in the morning, and on basketball tournaments.  Even at two years-old, I could spend the whole day with him and never be lonely or tired.  But then cancer came to my house, and I didn’t understand.  Dad got sick, then Grandpa got sick.  I knew that my mom’s mother had died from cancer, and with each headache or stomachache, I thought I would die, too.  My folks always talked with my sister and me about what it was to have cancer, how it made Dad feel, and how it affected us.  But no amount of explaining would convince me that I couldn’t catch cancer from Dad.  I was so afraid that it was contagious and that I would “come down with cancer,” that I stopped touching him all together.  I wouldn’t hug him, I wouldn’t hold his hand, I wouldn’t kiss his cheek.  I still loved him dearly, but at a distance.  This was the man with whom I “roughhoused” every night after dinner, with whom I rode cardboard-sleds down the hill at the high school track, and with whom, I secretly read “Shoeless Joe” and “Lonesome Dove” before bed each night.  And now I could only look at him and see sickness.   I knew he was the same person, and that he loved me, but I felt that he couldn’t protect me.  The big, strong coach that had always pulled me out of the way of danger, now was the danger.  He pleaded with me to come sit with him and read stories, or play “goop” (cornstarch and water) at the dinner table, but I couldn’t.  I wouldn’t.  And he never cried either, at least not in front of me.  But I think he did sometimes. 
For whatever reason, the one thing I didn’t fear doing with my dad, was playing the piano.  Our old Hardman passed hands from Great-Grandma Daw to Grandma Leinart, to Dad when he was a boy, and then to me.  Seth Thomas tick-tocked a steady rhythm that, in my imagination, protected me from the cancer.  Music protected me.  It made me stronger, and wiser, and wrapped a sheet of cool hands around me.  Grandpa taught me “Heart and Soul” as my very first piece, and I would like to think that I had much improved by age seven, though that is doubtful.  But Dad and I would play simple duets on the weathered keys, stopping only to pull on a sticky D.  For Dad’s heart, and my fear, these times pulled us through and let us know that there truly would be an end to all this, one way or another.
During the “cancer years” money all but disappeared.  We didn’t have a lot to begin with—Dad being a teacher and Mom staying at home with us girls—but penny-pinching was the name of the game in the Leinart household and we never went without.  But no amount of wishing or insurance can cover the cost of saving someone’s life, or attempting to.  I don’t think either I or my sister noticed the overall belt-tightening.  My folks carefully made do with home-made toys like rubber-band guitars and yarn dolls, and we always had plenty of paper grocery bags to do our vibrant “water paintings.”  Although these disappeared as they dried, we knew the bag remembered what they looked like, even if no one else did. 
I think my parents worried about Christmas that year.  Fortunately, our extended family goes on for miles, and when someone can’t, someone else always can.  Grandma and Grandpa, though they were dealing with things, as well, had plenty of money in the bank and made everyone feel like kings.  We went to Fort Benton that year and, in the burning glow of Grandma’s “tinsel only, no needles” Christmas tree, we opened more gifts than we had ever had before.  I think about half of what I opened ended up being Barbies—something that I would definitely be swapping for a baseball mitt later on.  Mom and Dad had never gotten my sister and I Barbies before.  I’m not sure if it is the whole idea of body image, the fact that they are not based on any children’s book (a must for my mother), or just that they are plain useless.  But no mind, my favorite gift that year came from Mom and Dad.  Using a library book as a reference, they had built me a violin out of wood, rawhide, and real strings.  They had even soaked and bent the wood for a bow.  I had begged them for three years for a violin.  I knew that the violin in the window downtown cost one-hundred dollars, and my pennies never seemed to get that high.  So here I was with my very own—albeit unique—violin.  I don’t know that the rest of the family appreciated my new toy, but I made sure they all got a concert before dinner.
Love and support are funny things when you’re going through something hard.  While Dad was sick, everyone tried their hardest to make up for anything that they felt we were lacking.  Aunts, uncles, cousins, family friends, and neighbors poured on the extra love.  I found this funny, because it wasn’t love that we were lacking.  Our family loved each other more than we ever had before.  We were learning how strong each one of us really was.  I learned that my sister—who was pale and skinny, and I always thought of her as “feather-like”—was a pillar of strength.  When Mom and Dad weren’t there to protect me, she grew to a giant and stood in front with her arms out wide, shielding my heart from everything in the world that could hurt me.  She read to me when Mom and Dad couldn’t, she helped me bake cookies, she brushed my hair, and she chased me around the yard.  Those were her “mom years,” and though she was only eleven years-old, I saw her with an Amazon-like quality.  So I always felt, amidst the smothering, over-nurturing, nearly breast-feeding quality of the rest of my family, that I was just fine.  I had everything I needed, thank you very much.
At seven years-old, I felt as grown as I would ever be.  Certainly, I wasn’t a baby anymore.  I could walk myself to the bus-stop, I could make a bologna sandwich, and I had several unwanted “grown-up” chores.  But as the rest of the world knows, at seven, I was a baby.  No one in the first grade needs to know the meaning of “responsibility,” at least not on any significant level.  I did my best to quell that notion, and take care of my family.  But I suppose, in any “hero child” role, there is an element of loneliness.  I had plenty of friends at school, around the neighborhood, and even a pen pal or two.  But if my little friends did not have a sick father or mother, or even a sick aunt or two, there really wasn’t much to talk about.  I had other interests in my life, but all of them were permeated with the diagnosis.  I like baseball, but my dad has cancer.  I want to build a fort, but my dad has cancer.  Happy birthday!  But my dad has cancer.  Going to slumber parties with my little friends showed me their perfect lives with their perfect parents, toys, and pets.  I wasn’t asking for much; I didn’t need American Girl dolls, or video games.  But I needed my dad to be well, and then I would figure the rest out. 
Each week or two, our family attended a cancer support group called “Operation Uplift” above the eye clinic.  I’m not sure if it was meant for children to attend, but we always went.  Sometimes adults were sick, sometimes kids were sick; but it seemed that every time, someone was missing from the time before.  Mary and I didn’t dare make friends, because they were sick friends.  We already had sick at our house, we didn’t want anymore.  Plus, if our friend died, that meant that our dad could die, or would die.  So, no, we didn’t want any friends, “uplifting” or otherwise.  But each session led to a family talk explaining where so-and-so went from last week.  After a while, we learned to stop asking.
Much of the time while Dad was sick and away at the hospital, we stayed with classmates and family friends.  Our relatives all lived far away and came as much as they could, but it wasn’t enough for cancer’s schedule.  This meant that we always kept a sleep-away bag packed and ready for doctor days or emergencies.  I was never one of those kids that loved sleepovers.  The concept rang well, but as soon as bedtime hit, I longed for my squeaky little bed with my books, blankets, and teddy.  I never dragged teddy along or my little blanket made by Grandma Swenson, for fear they would get left and then I would never sleep again.  So I laid there awake in strange bedrooms all over town, counting the minutes until I would be home.  Usually, if my friend had a big sister, my sister came too.  It being a small town, everyone knows everyone, and there are children in all shapes and sizes for matching up.  But on the off chance that we hit up a one-child family, then I would be all alone, making up stories about the little people who lived in the popcorn ceiling as I lay there awake at night.  Inevitably, loneliness set in and planned on staying a while.  I had always felt that my imagination left no room for loneliness.  I had imaginary friends, stories, other lives, and ghosts in my closet, all nestled away in my thoughts, just waiting for a rainy-day moment.  But over the long months, I cycled through the same old thoughts of owning a pony, marrying “Bob Farmer,” living in a coral reef, and flying away, over and over again.  Sadness can dry up even the most active imagination and leave it crumpled like an old raisin.  I had to come up with a plan or I’d go crazy.  That’s when I started talking to God.
To me, God was the best of invisible friends.  I had been to church and knew all the Bible stories by heart from the books-on-tape I got at the library, but I felt that what I knew about God and what He knew about me was special, and outside of everyone else.  I told God about my good days and bad days, I sang to Him, I wrote Him stories and jokes, and I thanked Him when we got pizza or hamburgers for dinner.  I knew He was strong and protective of me, and I knew no matter how much I begged, He had a plan for my dad that didn’t hinge upon anything I had to say.  I wasn’t afraid of God, thus never bound to be a Catholic, and I told Him so when I was angry.  I’d yell at Him or complain to Him about Him, and all the while I distinctly heard Him laughing from very far away.  God was my secret and my safe place.  I felt selfish about Him and didn’t share Him with anyone.  I figured that He was designated to me, as my helper, and so should not be bothered to visit with anyone else.  Again, laughing.  And so it went on for many months in many homes, that God became my mom and dad, when they were away.  And I was okay with that.
Over time, after many rounds of treatment, CAT Scans, check-ups, what have you, my dad started to get better.  His tumor shrunk from a softball, to a baseball, to a golf ball, to nothing.  And one day, Dr. Widen said “It’s time to go home.”  Dad was in remission from the thing that held us so tightly for over a year.  Check-ups were weekly, monthly, yearly, and one day, gone.  On that last check-up, Dr. Widen, now old and wizened, showed me the crayon drawings from all those years ago, that decorated his office.  My seven year-old hands exuded happiness even in time of fear and sadness.  There I was, a little pillar, myself.  Was I stronger then, than I am now?  It would seem so.
Dad never had a bad check-up, and never got lymphoma again.  Grandpa healed, too, and proudly, they showed each other their scars.  I learned to hug my dad again, to play catch, to drive a car, and eventually left for college, got married, and had a child of my own.  But my old dad still talks to me daily, and we never forget what cancer was to us as a family.  The scars are still there, physically, mentally, good, and bad.  I have never, yet, been able to sleep alone in a strange house; but to this day, I have never stopped talking to God.  I am a little less selfish and have learned to share Him with the rest of humanity, but I still think He likes me best and knows me better than anyone else.  My fears have changed over time.  I am not afraid now, and will not ever fear cancer.  As I grew into a woman, I knew that, take me or leave me, I am stronger than a diagnosis.  Cancer riddled my family in the form of skin cancer, breast cancer, lymphatic cancer, thyroid cancer, stomach cancer, and throat cancer.  It might happen to me, it might not.  I really don’t care, because I know how to fight, and I’m better than you, Cancer.  But if you come near my family, only then am I afraid of you, Cancer.  Take my legs, my arms, my breasts, my brain, but leave my family alone because I am the strongest.
In later years, it was discovered that pesticides caused lymphatic cancer.  Having a wheat farm in Montana, we were all too familiar with pesticides.  Apparently those “family get-togethers” of piling into the grain truck, driving up to the wheat, and pouring poison down gopher holes, was not the best decision.  My mother makes all her own household cleaners and weed-killers now, and refuses to buy anything with a label.  Dad is retired and substitute teaching in the Port Angeles School District.  My sister, Mary digs up history, as an archaeologist on the east coast,  And me? I am here writing to you.  So I guess we healed up just fine.  Tragedies and joys have come and gone in our lives, but strength remains despite all.  I suppose we have cancer to thank for that, but I don’t think I ever will.

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