This Test, and what it means

A week hasn’t gone by without me thinking about cancer.  About what it means to have cancer.  Walking through each step as though it were my own, examining each mark in the sand as though I have lived it.

Because I have, and I haven’t.

My mother was diagnosed with stage two breast cancer in 1998.  She was 37 years old.  Mastectomy, chemotherapy, recovery.  Tamoxifen, waiting, tests.  Growing, waiting, growing, waiting.  Back with stage four liver cancer, where one cell that remained hidden had traveled.  She was given two years to live and fought for five more.  Eight years she struggled.  Eight years she fought.  Eight years she had cancer and we all lived with it.

The tests, the waiting rooms, the hospital, pills, blankets, writhing on the bed in pain.  Waiting for it to get better, screaming in the car when it wasn’t.  Waiting.  Watching your mother slowly go away when all you want to do is go to Target and complain about not getting the shirt you want.  All you want to do is be normal and have fights and sometimes watch movies in bed, and realize over time that you are becoming less like mother and daughter and more like two adults, friends that grow old together.  Laughing.

She found out she had cancer from a lump.  She was so damn stubborn that she demanded to have it biopsied when the doctor said it was fine.  She was so damn stubborn that she wouldn’t stop gardening when she had her treatments.  She’d still get up and live and paint rooms of the house.  But even these memories slip away from me, holding sand tighter in my hands.  All you want to do is hold tight, to her, to what you have left.

When the cancer spread, like it does, that bitch of a disease, it went to her bones and brain.  The cancer hurt, the pills hurt, the growing of it hurt, and it made her tired.  It made us angry, sad, bargaining, accepting, denying, all grieving before we were actually grieving, all dying before we were really dying, all saying goodbye and carrying the secret guilt of wanting it to end.

The medication took her away, the cancer took her away, the bed and blankets took her away, the reality of it all took her away, as she retreated to a place where we couldn’t reach her.  I still can’t imagine this – knowing that you would never watch your children grow up, drink wine with your friends, fiddling in the garden before dinner, laughing on the beach.  I still can’t imagine what it was like for her to say goodbye.  Because we had to say goodbye to her, but she had to say goodbye to everything.  She had to live with that fact everyday.

I remember these moments of trying to live as much as I could with her before she left us.  What could we do?  How could we catch glimpses of a future that we could never dream of?  I never found out.

When the cancer spread, as it does, the doctor said we would take a break from chemo for a while.  We waited, as we were used to waiting… a creature that slips into your home, stares at you while you eat, move, laugh, holding your breath as this black hooded stranger holds that ticking clock.

She went into the hospital on a Thursday in August, the bone cancer pushing calcium into her bloodstream, and it was making her loopy.  Loopy, a term from my mother, is to describe her losing herself.  High from her own body, disappearing from us.  Taking medication by the handful, staring into space, talking to everyone and no one at the same time, seeing her own mother that had passed in dreams.

Before she slipped into her coma, she was laughing with the hospice nurse and drinking wine on the back deck of our home.  She was herself, she was laughing, she was joking as if this was any ordinary friend in her life, and not the person taking notes on how she’d prefer to die.  Because that’s how she was, a friend to everyone, always laughing. What we didn’t see was later that night, talking to my Dad.  Slow, quiet, stubborn, and sure.  Telling him the plans she had thought of for her funeral, sharing the songs she wanted, the details of her passing.

I remember when she was too sick to get into her bed at home, too sick to shower, too sick to stand, too sick for that glass of wine.  I remember the look on her face when we got the hospital bed delivered to our house.  She didn’t say a word, but just watched.  The bed that she knew she would die in.  Then the parade of people – family, friends, all well intentioned, all there to cry, to laugh, to be there with her.  We took turns staying up with her, feeding her morphine, and watching her disappear.  Staring into space, holding her hand, trying to find any of the right words to say to people who seem to have so much to say to you.  So many stories of this mother that you only knew as mother, not of the friend or person that I would never be able to know.

When she died, it was a Thursday.  It was raining and I laid in bed with her.  Holding her hand and holding her body, counting the seconds as they stretched in longer and longer increments between her breathing.  My head on her chest, waiting.  Waiting. Waiting. Breath. Waiting. Waiting. Waiting. Waiting. Breath.  Until it stopped, and she stopped.  And the world stopped.  Or, I hoped it would.  Because she was gone.  She would always be gone.  She would always be gone, and I would never have my mother again.

She was 37 when she was diagnosed and a week hasn’t gone by since then that I haven’t thought about cancer.  Breast cancer is genetic and I am 32.  I have carried my mother with me, through the Appalachian Mountains, through the birth of my baby, from house to house, move to move, road trip to road trip, even netflix movie marathons, she is with me.  But it might be more than just my mother that I carry.

Yesterday I was referred to a genetic counselor to see if I have the breast cancer gene.  I will be tested and I will find out if I have it or not.  I have thought about this test for years – what I would do with this knowledge.  Live out my bucket list?  Hold off of living for fear of hurting those around me as I have been hurt?  Try to make the world a better place?  What is really important to me to see and do and live before I go?  Become a strict vegan and juice everything?  Have prophylactic surgery – double mastectomy and my ovaries taken out?  Do I have more children if it’s a yes?  Every week I have thought about cancer and every week I assumed I would get cancer, every week I assumed I would die young.  It has shaped me.

I don’t know what to do with this waiting.  I know this, but I don’t.  I know the cloaked figure with the ticking clock, because that’s what waiting is to me, but I don’t know what my waiting is like.

I’ll find out when my appointment is soon, then I’ll have my blood drawn, and wait.  I’m scared.  I’m so scared.  This has been a test nearly twenty years in the making.  Nearly twenty years of the biggest question mark in my world.  But now.  Now I wait and wait and wait and breathe. I’ll know soon and then it will be baby steps.

 

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