Tag Archives: lymphoma

i have my mother’s feet

The combination of emotional suffering and regular exercise has given me what feels at times like superhuman strength.  I have endurance, I have grit, I can hike for miles on end. I ran marathons in my twenties, but this feels different.  I can dig down deeper.  I have removed the limitations of my mind, and I am healthy.  My body can carry me far if I get out of her way.

I spent last weekend hiking and backpacking 30 miles in the Grand Canyon.  It tired me, but it seems as though I could have gone further.  I could have done more. I wasn’t spent. But even so, the milage did take its toll, and my feet were blistered, my muscles protesting for several days after the trip.  The first evening after returning to work and to my regular life, I eased my swollen feet into the tub and did a double take.

I saw my mother’s feet.

Well, not the feet that flew around her kitchen, making dinner.  Not the feet that walked the beach in Mexico.  They were the feet she had when she was dying.  Puffy, tender.  Like a baby’s. I would put lotion on those feet and ease them into her trousers when she was too weak to do so.  I rubbed them when they were sore and set Epsom salt soaks to ease the discomfort. She would lean on my arm as she walked, hesitantly and slowly, the pain in her face evident.  I couldn’t cure her, but I could care for her, and every slipper I slid on her feet and every pillow propped beneath her swollen legs was done with a frantic enthusiasm of a daughter that had to do something, anything.

We got pedicures about a month before she died and she went to the morgue with pink toenails tipped in white. She looked cherished, and she was. My toenails have canyon dust wedged beneath them, appendages ragged from hiking, swollen due to inflammation from long exercise rather than a failing lymphatic system.  I think I’m far from my death bed;  I’ve never felt more alive. But still, if you squint in the bathroom , you can see them there, my dying mother’s feet peeking above the bathwater.

galveston

Galveston, August 2011

She doesn’t visit me often in my dreams.  I don’t hear her voice echoing in the quiet. She feels far away, she feels gone.  But I have visions like this one, where she and I are a circle, an ouroboros. My legs, her feet. My eyes, her smile.  I am not superhuman. I am just a person, fleshy and messy and powerful and weak. I am living, I am dying. I carry my mother with me, and she carries me forward. Her death is part of my life, as my life was part of her death. We ended, and we have only just begun.

We are one.

a very good housekeeper

You died, and I have struggled.  You spoke with such breeziness in your final weeks of life: Oh, I don’t have to worry about you. But maybe you should have. Maybe then you would have turned your beautiful face to me and said How can I help ease the impossibly painful? And I would have told you.

Yes, complaining about this might be proof that I am in fact the worlds biggest asshole, but it has been hard to get over, Mom. Every time I think I find a shred of peace with this, I stub my toe on it again.

What is “this?” you may ask. I’ll tell you now:

You didn’t talk to me. You kept your emotions stowed away like Christmas presents hidden from a four-year old.  You were sick and you were dying and I knew nothing of what was in your heart.  I’ve had people I barely know clutch my hand with bony, cool fingers, stare straight into my eyes with a watery gaze and tell me how it is for them.  What its like to die.  What they are proud of.  What they regret.  What they hope for their loved ones after they are gone. And you did none of that. You were free with your smiles with everyone on the elevators, in the lobbies, with every cashier, every nursing attendant. You smiled and you smiled and you were polite and gracious and never complained, but you never opened up either.

It is selfish of me to have wanted more from you. It was your journey, your business.  But I felt betrayed because I wanted to give you what you gave me. From the beginning of my life till the end of yours, I would bare my soul to you, all the joy as well as all the pain, and you would listen, take it all in and love me regardless. You were my best friend; I wanted to be yours too.  Yet when you needed me the most, I was not to be trusted. The opportunity to support you in death as I was supported in life was refused, and this seemingly reinforced the longstanding suspicion that I was not worthy to be your daughter.

I know, I know.  But I wasn’t. You were the rarest of creatures: beautiful, unfailingly kind, bright, funny. You daughter should have been someone less average.

It is difficult for me to understand why you closed the door on me at the end.  And it wasn’t just me; I’m not sure that you trusted anyone with your fears and your grief. Perhaps you were too afraid at what you would find in the dark recesses, so you sealed them off and acknowledged only the sunshine. Maybe you did with your heart what you did with your home: locked the basement door, opened the living room blinds, arranged the flowers, fluffed the pillows.  Made everything beautiful and tidy before you left. This makes some sense.  You were always a very good housekeeper.

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one year without her

Last year, my mother was dying– slipping from the hands of those she loved, carried away on an invisible current, far beyond the horizon.

Those final days were busy; turning Mom and medicating her every two hours around the clock, caring for Grandma too, coordinating family phone calls, cooking food, cleaning house,all while grieving hard. I would gaze at my dying mother with a broken heart, filled with regret for all that she would miss, all that I would miss. Some moments I would rage and shake with body sobs that emerged from the abyss  and other times I felt like a shell of a person, and if a strong wind blew my way I would crumble to ash.

Mercifully, it was gentle:  She fell into a deep coma and on December 13th, as we held her hand she took her last breath.

Anger comes and goes like the weather, and at the moment my fury of a few weeks ago has drifted away. I am sad, and there isn’t a day that goes by where I don’t miss her.  But I also feel  peace and comfort, as though she is sending me a hug from beyond. I can’t explain it, I can only accept it.

025 - CopyPerhaps she is still here, among us, in the flowers and the birds and the water and the sunshine.

the trappings of December

Not even 36 hours into December, and it already feels like a long month.

Last year around the first of December, my mother asked me if I thought she’d live to see Christmas.  I told her I didn’t know, with a not-so-hopeful tone to my voice. Her shoulders fell, and she turned her gaze downward- she mostly communicated with her body language; her gestures  betrayed the feelings she so rarely voiced. I quickly added that I hoped so and gave a weak smile, but it was too late.

I wonder why I needed to be so brutally honest in that moment.  My mother loved Christmas.  The holiday music, the tacky sweaters (she owned at least 6), the family gatherings.  I wish in that moment I had held her hand, and looked into her eyes and said something upbeat, like “why not?” or “Christmas with you would be wonderful!” She would have done something like that for me.

She didn’t live to see Christmas, but she almost made it; she died on the 13th, and she got to enjoy part of the holiday season. Christmas of 2011 was nothing like Christmas Past, but her cousin artfully decorated the inside of the house, and we strung multicolored Christmas lights along the roof that cheerfully twinkled in the long, dark nights.  I found CD after CD of Christmas music, and played the familiar tunes softly for my mother as she was unconscious in her bed.  The machinery of thoughtful friends and community members kept us fueled with sugar.

This year, the holidays have returned to semblance of the norm. I participate in the holiday parties,the home decorating, the gift exchanges. I unfurled dusty decorations that haven’t seen the light of day in two years; my husband hung multi-colored orbs from our mesquite tree that sparkle in the Arizona sunshine.

Holiday rituals bring me joy, but I feel her absence so acutely.  The songs that ushered her out of this life fill my ears and I long for that which has slipped away on an invisible current.

I will always remember her padding in the kitchen, making cider or cooking up a beef dinner for her relatives wearing her latest Christmas sweater acquisition, jingle-bell earrings flashing under the fluorescent light.  She would flash me a big smile and say without words that yes, this is the best stuff of life.

Christmas 2008

Christmas 2008

the light amidst the struggle

One morning this week, I spied a woodpecker perched on a tree outside of the Cancer Center. Such athletic, flighty creatures, it seemed odd that he remained perfectly still, appraising me and the rest of the world around him with his unblinking eye.  Only a few feet away, I stared back and sipped my tea and my bones started rattling deep, deep inside:

I don’t want to go to work!!

Its odd, I almost always walk through the doors of the Cancer Center with a smile on my face, eager to see patients and start my day. But its been a struggle lately.  I’ve been tired, and working so very hard.  The endless stream of emails, prior authorization requests, distraught patients, hospice talks, conflict between staff members, and ever mounting pile of unsigned notes are taking their toll.

Or is it something more internal that caused me to be frozen under cloudy sky, unable to walk through the Cancer Center door?  I haven’t been taking care of myself as well as I could, but its not all been miserable either- I have been eating pretty well, and taking my dear dog for runs in the dark November mornings.

And then there are the anniversaries that quietly haunt me.  The anniversary of the day I napped next to my mother and noticed she was breathing differently.  It was so subtle, it escapes description.  But I knew something was different.  And she smelled different too- not bad, just ever so slightly different. The dying process started with a whisper on November 13th, 2011.

And then on November 14th, I got the call at 6 in the morning that she was hospitalized with a bowel obstruction, and in a matter of minutes I was barreling down the highway again in my Corolla, headed to Phoenix and biting my nails I could make it there in time. Turns out, we had quite a bit more time: almost a month.

Then there was the cascade of events and phone calls and praying and weeping in lobbies that lead her to be sent home on November 15th with hospice care. It felt so right and so wrong and so unbelievable, a dream and a nightmare.

Life had a singular focus: my mother.  There was no room for the stuff that doesn’t matter, like work stresses.  There also wasn’t room for a lot of stuff that does matter.

So, this year I’m doing well.  I smile a lot, and even have started worried about some of the small stuff again.  But this year, on November 14th, I struggled to go to work. I stood outside of the clinic under a grey sky, longing to stay still and sip tea and stare at beautiful birds. I had little to offer to the patients waiting for me, but I gave them what I could.  I needed not to give, but to receive.

It wasn’t an easy day for me. But perhaps the universe understood my plight, because when I came home there were two packages waiting for me: dried corn from my mom’s dear friend, and a book from my dear sister.

I don’t always get what I want, but sometimes I get what I need.

my mother’s autopsy

Prior to her passing, my mother chose to donate her body to research.  I met the physicians who would do her autopsy and tissue collection about 10 days before she died.  They signed up to bring us pasta on our meal donation website.  Mom had told me that they were from the Banner Sun Health Research Institute, but it didn’t occur to me that they would be slicing into my mother’s heart, holding my mother’s brain, until they were visiting with her in our living room.

They were kind. They enjoyed her in health (she had helped them raise money for a new facility while she was still working), and they were devoted to her with death looming near.  They knelt before my dying mother and held her hands.  They looked me straight in the eye and told me they would take care of her.  It wasn’t until then that I understood the depth of generosity in my mother’s donation, and the importance of helping these special people, so suited for the difficult work that they do. Mom, as always, chose well.  I trusted them, and with the intimacy of their task at hand, I started to think of them as family.

Yes, take my mother’s body, I thought.  I would give it to no one else. 

The first phone call was to the research institute after she took her last breath.

Her funeral was nearly a month after she passed.  Those kind doctors came.  She was cremated, their work complete. I gave them a big hug, and knew nothing else to say other than thank you.  Thank you, for helping others learn from my mother’s cancer.  Thank you, for slicing into that big heart, for holding her brain, for dissecting her tumor and sending it to the four corners of the earth.

Today, 8 months after her funeral,  I received the autopsy report.  When I checked the mail I was stressing out over a scheduling mix up over a certification exam; small shit, really. Its funny how quickly one can revert to shallow concerns after months of worrying about life and death. The letter was in a nondescript envelope, but it was thick, and I knew what it contained.  My anxiety about my test fell away.

Reading the report brought up mixed emotions. At first, I felt a little bit like a kid at Christmastime.  Mom’s brain weighed 1404 grams, who knew? But then I felt disappointment.  Coming from an oncology background, I want to understand her cancer on a cellular level.  Why it was so drug resistant.  Why she wasn’t cured.  Part of me was naively hoping there would be some striking insight from her autopsy on why she had to die, on that rainy December day at the age of 58. There wasn’t one.

I didn’t learn much from the report.  Her abdomen was full of lymphoma, but it had not infiltrated her kidneys or her brain like I thought it might have. It still seems unclear what kind of lymphoma she had, exactly. The report didn’t tell me why it was, to quote my mentor and friend, “the world’s worst lymphoma.”  And now, I will learn nothing more from her physical body.  The days of pouring over her CT scans and lab reports and now this final document are done.

I must accept that she is gone, and it will never make any sense.

Mom’s body has been turned to ash, but her tumor is preserved in a tissue bank somewhere.  Perhaps someday those rogue cells will give up their secrets to researchers someday.  Perhaps those researchers will use the knowledge gained to to save another mother’s life, somewhere. I hope they remember, as they hold the cold slides in their gloved hands, that this cancer was terrible and powerful enough to take a most perfect soul, and break the hearts of those that loved her.

integration

People say I’m doing better.  I suppose they are right. I have put on 10 pounds this year.  I’m more energetic, with a ready smile.  But grief is a funny creature; she lurks just under the surface, ready to crawl into my throat and choke me when I least expect it. 

August 2011. Her kidneys were failing but we found joy in each others presence.

I’ve felt depressed this week.  An astrologer thought it might have something to do with the position of Uranus.  As beautiful as it is to believe a distant blue dot could hold such planetary sway, I think its just that I miss my mom.  She was so wonderful to talk to.  Engaged, honest, warm.  The perfect confidante.  I can’t say I’m lonely, but I’m lonely for her. Its a deep ache that all the well-meaning loved ones in my life can’t alleviate.

I’m in Flagstaff for a conference, and there is something about a solo road trip that was good for me. As my tires spun up Interstate 17, I reached a place beyond my sadness. One where grief and joy can live together.  Because if the ache cannot be alleviated, then I must learn to be happy around, beside and within the  sorrow. 

I believe there is a place where you can mourn the rabbits or coyote or deer splattered on the highway, the bugs on the windshield, the suffering of all creatures everywhere.  Bemoan the missed opportunities, the past memories that were as unappreciated at the time as they were beautiful.  Long for the loves that left, and the ones who you could have loved but were never brave enough to.  The idea that never worked out, the dream that vanished into the ethers, the future you planned on but never came to pass.  Vanquished beauty.  Sickness. And in this place of mourning your heart can crack right open as you drive your car or van or truck into a beautiful Arizona sunset painted on a backdrop of purple mountains.  You can feel good as your trusty vehicle carries you up, up into those purple mountains, the steady whirring of tires a drone beneath your favorite songs pumping out of the speakers.  You are dazzled by beauty, by how lucky you are, how healthy your body, how full your life. In that moment you have it all, in the only way that matters: sadness and joy, laughter and tears, hope and pain, in perfect integration.