Thursday, May 19, 2011

I Hate Cancer- Have I Mentioned That Lately?

    In 1985 I was in Jr. High.  I had discovered boys, tight perms and miniskirts.  I hated dayglo orange but I loved my jelly flats and I used at least a can of Aqua Net hairspray a week.  Rick Springfield's Jessie's Girl was my favorite song and Teen Beat heart throbs hung on my wall.  June 13th was a Friday, just days away from the end of the school year and the freedom that summer would provide.  I remember wanting to grab my bike and head over to my friend Karen's house.  We almost always had sleepovers on fridays, just to escape our parents and our younger siblings.  Finally old enough to ride across our small town on my own, my pink and grey ten speed was my most prized possession.
    On this particular friday the house was eerily quiet.  My little brother, four at the time, should have been running around terrorizing our baby sister, barely two.  Instead the whole house was silent.  I climbed the stairs to the second floor and called out with no response.  Finally I found my mother in her room.  I could see that she had been crying but as an awkward teenager, I had no idea what to say.
    It was on that beautiful sunny upstate New York day that we learned that my baby brother had something called Leukemia.
   Leukemia.
  I still hate that word.  The only word I hate more is Cancer.
  Twenty six years ago the survival rates for Leukemia were so much less than they are now.  And of course, my brother had what was once considered the "adult" form.  Not common in children and not nearly as easy to cure.
  In just a few minutes the once promising days of summer slipped away and became a flurry of doctors, chemotherapy, hair loss, vomiting, and falling blood counts.
  The days I planned to spend riding my bike, flirting with boys at the town pool and basically just being young and free were instead spent in the house babysitting my younger sisters, learning to do laundry, keeping up on the housework and preparing meals.  If it weren't for the presence of Karen who biked to my house nearly every single day I am not sure I would have been able to keep it together. 
   Especially when there was more bad news.
  The chemotherapy drugs weren't killing the cancer cells quickly enough. 
  The only option left was bone marrow transplant, or BMT.
   A bone marrow transplant?  At that age I had no idea what bone marrow even was, let alone the fact that it could be transplanted from one person to another.
  BMT's were still somewhat experimental at that time and were only performed at select hospitals.  My brother's would be done at Sloan Kettering Memorial Hospital in New York City.
   Not only were they experiemental, they were also very, very expensive and insurance companies were often hesitant to take on such costs.  Still, it was the only option and my parents were going to take it.
   The first step was to find a donor.  Back then they only looked a few factors.  Blood type, the presence of certain proteins and other biochemical molecules.  The best hope was for a related donor, preferably one of his siblings since we all shared the same genetics.  The doctors explained the importance of a match and the likelihood that they may not find one.
   My two sisters and I gave blood and then went home to wait.
  Everyone was absolutely amazed when it turned out that all three of us were perfect matches!
  Since I was the oldest, strongest and healthiest it was decided that I was the best choice.  It never even occurred to me to say no.  I had no idea what the procedure entailed but it didn't matter.
   We left for NYC in January 1986. 
  The Ronald McDonald house is a charitable organization that provides housing for ill children and their families.  All five of us shared a room with two beds and a crib.  My brother stayed at the hospital. 
   The first week they killed his bone marrow with high doses of radiation aimed at his frail little body every day for five days.  At the end of the week he was in isolation with absolutely no immune system at all and no way of creating one on his own. 
   When the time came, I joined him in the hospital.  The surgery was quick.  Using a large syringe, they removed bone marrow from my hip bones and put it into an IV bag.  My brother sat in his isolation room playing Nintendo while my bone barrow dripped into his blood stream through a tube.
   And then the waiting began.
   White blood cells are vital immune system molecules.  They fight infection and keep us healthy.  After radiation, they are all gone.  After a BMT, every one waits to see them begin to appear again.
   We waited and waited for those cells to appear. 
   Nothing happened. 
   Our faith dwindled.
  Mom cried alot, Dad cursed alot.  I spent my days with my sisters at the RMH, my parents spent their days at the hospital.
  Mom's tears turned to prayers. 
  And still nothing happened.
  The doctor's lost hope, we said our goodbyes.
  If you ask him now, my brother tells an awesome story of a visit he had from a man while he slept.  They played games and talked and then the man left.  I could never tell the story like he does so I won't even try.
All I know is the morning after we said our goodbyes, his white blood cell count multiplied and multiplied some more.
   He woke up smiling and happy.
  In thoss days the hospital performed BMT's in clusters of four.  Survival was about 25% which meant only one of the four made it to go home.
  The other three children did not make it.
  Almost twenty six years of remission make him one heck of a survival story.
 Sometimes when he's feeling fresh, he will call me and say "Hey, sis, thanks for the bone marrow." We laugh but we know its no joke.
  I gave him the marrow but he did all the hard work- he put it to good use.
  As adults we have gone in different directions.  He works miracles in a kitchen creating meals that amaze people.  I teach science to teenagers and count my grey hairs at the end of every semester.  I am married with children, he still lives the bachelor life.  But we are brother and sister, connected  not only by DNA but by the very marrow in our bones.
   As I travel my self defined road toward my own redemption I have forced myself to examine my life both in the present and in the past. There were times in my youth where I resented the circumstances forced upon us by cancer.  But I never once resented my brother.  I know sometimes he feels like we blame him for "wrecking all our lives" but I don't.  I never could.  He beat the odds.  Even when the odds were stacked completely against him. 
   Of course, I hope he knows that if he had gone and died on us I would have held him completely responsible for wrecking our lives.
   Since those days I have seen others I care about suffer the ill effects of cancer.  There was Dad of course, and most recently a close friend who has valiantly fought off breast cancer.  As a scientist I understand cancer on a molecular level.  As a human being I will never understand it on an emotional level.  I hate the way it consumes body, mind and spirit just at the mention of its name.
  How did one silly little mutated cell become so all powerful anyway?

   

1 comment:

  1. What can I say? Your post has brought a level of healing to me. This part of our lives has been swept under my emotional carpet. If it weren't, I'm not sure I would have been good to anyone around me.

    That man you speak of was God. I asked him are you sure he wasn't younger? Your brother said "No. He had white hair and a long white beard." This was just a few months back. Your brother asked what was behind the big gold and white gates. 'The Man' said he couldn't go there. If he did, he could not come back to his family.
    Such a kind God, to give your brother back to us. And he's a man who can cook!

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