For About and By Caregivers

By  Sarah M. Glover   


I sit across the hall from my mother-in-law, Virginia, who is emitting 13.9 millirems of radiation.  I have to shout when I speak with her because of the metal barrier that separates us.  Garbage litters her hospital room where she has remained in isolation for the past 14 days, as nothing and no one can pass within 10 feet of her without becoming contaminated.  The high level of radiation within her body could poison me.  The very germs upon my palms could poison her.  We are a threat to each other for the first time.

For over three years, Virginia has battled an aggressive form of non-Hodgkin’s lymphoma.  She has already undergone chemotherapy, lost her hair and grown it back countless times, endured spinal taps and bone marrow transplants, and railed against the bureaucracy of everyone from the FDA to Congress to receive her current treatment.  A note in her chart reads, “A 76-year-old female with the constitution of a much younger woman.”  This is an understatement.  My mother-in-law is a force of nature who now is entirely at its whim.  She is also my friend—an incongruous role in a society where the mother-in-law is usually cast as lead villain.

Behind the metal divide, tiny nuclear bombs of a new experimental drug have detonated inside her, killing the cancer cells; the massive round of chemotherapy she’s received on this protocol has killed nearly everything else.  Days from now, she will have few white blood cells left.  At this weakest point, when her body has sacrificed all its reinforcements, she will receive her stem cells and they will grow new cells—or they won’t.

The family liaison tells me that the day patients receive their stem cells is dubbed their “new birthday,” and one often sees balloons or party hats amongst the pale skin and bald heads.  No flowers, of course.  My mother-in-law—this quintessential New Englander—will be unable to touch dirt for one year.  Her beloved garden will have to wait for her until next summer.

I return home later that day to the Pete Gross House, or the Cancer Casa, as we have irreverently dubbed it.  A residence apartment in downtown Seattle, it houses transplant patients and their families and is near the Fred Hutchinson Cancer Research Center, or the “Hutch.” The Hutch is another word in the barrage of cancer lingo I am slowly absorbing.  I am a “caregiver,” a person who can drive my mother-in-law to and from the “Hutch”:  a person who can change the dressing around her “Hickman,” an intravenous catheter used for the administration of “chemo” and other “meds,” and from where her daily “draw” of blood is taken, a person who makes sure that everything this cancer “victim” touches, from her bathroom vanity to a drinking glass, remains as sterile as possible. 

As a caregiver, I am also responsible to provide comfort and companionship.  For this, there is no lingo.

The Cancer Casa is sterile, yet homey.  I walk down the fourth floor corridor back to our room, feeling the unevenness of new places. This could be any hotel room I’ve visited—the non-descript carpeting, the beige walls.  Except almost every door I see bears a personal collage of photographs.  They hang there, smiles frozen, reminders of healthier times—encouragement during the frequent comings and goings of the patients and the visitors.  I’m uncomfortable looking at them.

At the end of the week, Virginia is allowed to return to the Pete Gross House.  Fiercely independent, she bristles against my help, but her body demands it.  She cannot stand on her own; her legs are useless.  I reach around her, hoisting her up from her bed to the bathroom, laughing with her that she makes a crummy dance partner.  She snorts and sings a tune.  I remember years ago, while waiting for a subway late one night, she jumped up and began tap dancing.  She swirled along the tiles, chuckling at her improvised soft shoe.  I joined her, singing something from Cole Porter.  We finally collapsed on a bench in gales of laughter after receiving rousing applause from several men disembarking a car.

The following days are spent in near catastrophes as we drive back and forth from the Cancer Casa to the Hutch.  Looking like circus clowns, myself a mere 5’3”, I strain to extricate this 5’9” grandmother from a Ford Focus.  I can feel the rebellion in Virginia’s flesh as I try to lift her, try to hold on to her as she fights to hold on to her vitality, her control.  I need to help her, and I take heart in the fact that I can help; but I swallow down fear every time my arms fold about her.  My love for this woman is so strong; I cannot falter, I cannot slip.  I cannot let my mind envision a life without her.  If I stop fighting, if I stop laughing, I will give into this—this dark pull that lurks in the corners of these antiseptic corridors and on the lips of people on cell phones wiping tears from their eyes.

Another day passes.  I return from the hospital, having left my mother-in-law behind for transfusions.  The fourth floor is empty.  I reach our apartment and glance behind me.  The photo of a small girl with a blue crocheted cap is taped to the door opposite ours.   I stare at her.  Her large kindergarten head rests upon an unknown shoulder; the owner has been cut away by the popsicle frame.  A photo of a Papillion with an elaborate name is hung below what appears to be family members sitting at a kitchen table.  They smile for the camera.  It is an old photo.  I feel both voyeur and mourner at that moment.  Is the young girl the patient?  Is one of these others the patient?  I cannot tell.  I think of my son and daughter back in San Francisco.  I could not do this if they lived behind that door.  
I turn back into our room and bolt the lock tight behind me, realizing for the first time that there are no photos on our door.

On the last day of my stay, my mother-in-law is readmitted to the hospital to receive her six million stem cells,  cells housed in plastic, salmon-colored baggies that look like frozen food and smell like rancid garlic.  Surrounded by balloons and cards, we sing and laugh as they sloop their way through her Hickman.  In a few hours, they will find their way to her bone marrow and begin their journey. 

I will be leaving soon; my sister-in-law will replace me in a few hours, another caregiver in our family’s round-robin of cancer care.  Our good-bye is difficult.  Both mothers, we are fighting to maintain a positive outlook.  Everything will be fine.  We will be together in Maine this summer and sit on her deck and eat Tony’s donuts with our morning coffee and watch the kids run around the back yard.  Yet I pause in the doorway, gripped by fear.  Like a child, I want to run to her and kiss her; something I know is verboten.  I have been washing my hands like some modern day Lady Macbeth since I got here. The thought of the plethora of germs one kiss could impart is staggering.  I can move neither forward nor backward.  “I love you,” I say to her. “You know that?” Her answer is soft; her voice struggles to hold on to itself.  “Yes.”

I force myself forward to the elevator and headlong into the rental car.  A forgotten item at the Pete Gross House causes me to detour off of the highway on my way to the airport.  I lock the door of our apartment one last time.  I will not be coming back.  My mother-in-law has been given one bite of the apple—no more. 
Standing there in the empty hallway, keys in hand, the feeling of abdicating control haunts me.  Who will manage her Sisyphean load of pills?  Who will make sure she doesn’t fall?  I have become comfortable in an uncomfortable world and suddenly find myself desperate to stay.

The door of the apartment behind me opens. I freeze. A singular sound stands there, waiting, adjusting the photos on the door. Man, woman, child, I know not. They disappear toward the elevator with the sound of their footsteps. Finally, I lift my head, guilty for it. I should have introduced myself. I should have wished them success. I should have gazed upon their face with hope. 

But I can hold only one hope in my heart.  To take on more would require more than I have to give.  I will hope for my mother-in-law.  I will tack that hope among thousands of others—the scenes of our life together, the countless snapshots of my love for this woman that lie within my heart alone.

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