Tag Archives: fear

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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the longest night of the year

This year’s winter solstice gave me the opportunity to experience fear- the kind that crawls down your throat, sucks the air out of your lungs, and grips your heart with an icy claw.

I was helpless.  Once again, life pulled me into that deep recess.  I wondered it it was better to channel my inner warrior queen, with her blood-stained headdress and war paint, to fight my way out with violent, valiant courage? Or was it better to reach in and rock my fear like a frightened child until it fell asleep in my arms?  Or simply breathe and whisper silent prayers on chapped lips and stay ever so still?

I’m not sure of the answer, but I made it through.  Sleep found me and I survived the longest night of the year.  Despite the stretched-out hours of darkness, morning was warmer than usual and I embraced the daylight with my entire being.

For now, the fear has scampered away to find a place to hide in the shadows.   The Earth is cycling back towards the sun, the center.  The days will now become imperceptibly yet tangibly longer.  Hope lives again.

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We are a team

Are we on the same team?

The thing is, I’m tired

I’m tired

And there are so many of you

There are too many of you

You’ll be okay

But I want to live!

I pray you’ll be okay

This must be what it feels like to die

Can a person really save someone else?

A single thread slipping through my fingers

A giant chessboard, smooth beneath a mysterious hand

So easy to float away

Pawns of fate, so helpless

So helpless

But fate or not, I make my move

I hold on tight

We plunge ahead

Eyes wide with fear and wonder

Madness and courage

Fear and wonder

 


 

 

all we have

Some days, being a nurse in oncology exhausts me to the core.

No, I don’t know if you will puke, if you will have diarrhea, if you’ll get an infection. I don’t know if your cancer will come back, if your tumor is bigger, if the chemo is working, if the cancer is in your liver, your bones, your brain. I don’t know if you’ll live to get married, or to see the ocean again, if you’ll be able to have a baby, if you’ll see your grandchild graduate high school.  If you’ll bury your spouse, or if your spouse will bury you. I don’t know if you’ll die in 6 months, 12 months, 12 years.  

Clearly, I don’t know much.

But in this tiring day in clinic, I had the blessing of caring for a patient who has been through every permutation of chemotherapy known to (wo)man for breast cancer, who looked me straight in the eye and said:

I know I’m going to die.  But I’m going to enjoy the life that I have, however long that is.  

She meant it.  She’s ready for the inevitable, but she’s grounded in the present.

We are so busy making plans for a future that may or may not come.  We grind away at jobs in order to get rewards down the road, we delay the telephone calls, the new dress, the vacation. I’m not saying that planning ahead is a bad thing, but it must be tempered with a grounding energy and a dedication to this very moment:

Take a breath. Feel your chair beneath your body, the ridges on your keyboard.  This is all there is, right now.

So own it.

facing fear

Today, I faced fear. I surprised a lucky stranger by singing “happy birthday” while strumming away on my ukulele. This occurred in a public place, orchestrated by her wife.

It was scary for me.  Music performance has been tangled up with my perfectionism for many years, and  I’ve long subscribed to the story that I have a terrible voice. I only know a scattering of chords on the uke, hardly an expert with the skills to make an audience go “wow!” And the combination of singing and strumming.. oy!

I don’t know when I stopped having fun performing.  I recall feeling confident and calm at my harp recitals as a child. But as I became more self aware, I disappointed myself.   I never could quite be the musician I wanted to be, even though I tried in my studies to be perfect, to hit every note just right.  Problem is, I’m just not that good. And I’m kind of lazy, and have many interests beyond music that called to me with a siren song. I wanted to be, want to be, a great musician, and to become this way effortlessly.

I studied harp from the age of 10 all the way through college, and didn’t have the fun as I could have. I squandered years with performance anxiety and by telling myself “I can’t.” I squandered the benefits of my hard work by focusing on what I had not accomplished, how I had failed myself or my teachers in some way.

I’ll never get that time back, but when my coworker asks me for my presence and my song I can say yes.  I can shrug my fears aside like an ugly, too-small jacket that clings across the shoulders, and just do it. I can sing and I can smile.  To quote the Hokey Pokey, isn’t that what its all about?

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my work

Here I go, breaking my rules again… (the one about not writing about work)

Its been a hard few weeks at the office.  Even though I feel I’m divinely suited for this job (nurse practitioner in oncology), sometimes its overwhelming, and I think maybe life working in urgent care or a weight loss clinic wouldn’t be so bad.  This last month has been full of disease progression, hospice discharges, and death.  People I have grown to love, struggling with pain, dying too young.

My years of working in bone marrow transplant taught me a certain brand of detachment–  how to stay rooted in the present and not be attached to a future for the human beings in front of me.  It was a powerful lesson in letting go; I couldn’t look into the eyes of children with high risk leukemia day after day and worry about what was awaiting them next month or next year– it was unlikely to be a healthy, normal childhood. I had to care for and advocate for my patients, do the very best job possible every day, but turn over the outcomes and what would happen tomorrow to the universe, God, Buddha, Mother Mary, physicians, someone or something else other than myself. Because there are patients that will die despite a favorable prognosis and everyone doing the right thing, and there are patients that will somehow fight their way out of the grip of death and against all odds, survive. You never quite know in this business.

My patients these days are healthier and many of them are cured.  Even the women with aggressive, metastatic disease usually live years rather than months. I see them week after week, month after month, and I grow very fond of them.  We laugh together, we hug, we share photos and stories, I meet their best friends and relatives.  Its hard to say goodbye after such a long relationship.  I thought I was getting better at this but now I’m not so sure.  My loss of my mother has made me more sensitive to what the families are going through. As I work through my own grief I can feel what the surviving loved ones are experiencing.  It hurts.  I also see my mother in some of these patients and feel as helpless as I did to fix things during her illness.  I sit in the exam rooms with my dying patients and look down at my empty, searching hands.

And yet perspective is everything.  I am greeted with success stories every day.  These women plunged down the rabbit hole of cancer treatment and emerged on the other side, bathed in sunlight. As elusive as those rogue cells can be, resorting to every dirty trick in the book, sometimes cancer is completely slaughtered with the arsenal of treatment.  It happens.  An everyday miracle.  A billion cells, a million microscopic explosions in the battlefield of the body.  Victory down to the smallest unit of life.

Even when the war cannot be won, the enemy is usually held at bay for a while.  Mom’s cancer was very drug resistant, but I still think chemo bought her time.  Important time.  If she were here, I think she’d say that the nausea and the hair loss and the fatigue was worth it for her.

So, what I do weighs on me sometimes.  But it matters.  I can’t forget that.

the last Mother’s Day

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mom and her mild mimosa

 

I was in Houston yesterday for about an hour, on a layover from Tucson to Miami for a research protocol meeting.  I was in Houston this time a year ago, following my mother’s first cycle of salvage chemo, for Mother’s Day.  Time in an airport hardly counts, but it felt familiar; out my little airplane window was the same flat expanse of land, the strangely even tree line (as if the trees got together and reached consensus to which height they would collectively reach), and the billowing cloud cover. 

Mother’s Day 2012 is looming, and my ability to deny the existence of this holiday is waning.  I wish I could embrace memories of years past, but I seem to remember nothing before Mother’s Day 2011.  I have fuzzy recollections of Sunday brunches, of rushing to find a card or order flowers.   Most are lost to me now.  I think it always seemed like a “Hallmark Holiday.”

Last year was the first time I saw her really sick.  B-Cell Lymphoma patients often get blasted with a five-drug combination regimen, and Mom sailed through that regimen with very minimal side effects. Naturally beautiful, she looked positively radiant when it was confirmed that her lymphoma was still growing, that she had not achieved a remission with the very aggressive initial therapy.  “I just feel so good!” was her mantra, all the way to MD Anderson Cancer Center where she participated in a clinical trial.

It was at the end of this first cycle of second-line treatment when I rushed into her hospital room in Houston Texas in May, 2011.  Who I saw there didn’t look like my mother.  She looked like the hundreds of cancer patients I had taken care of in the hospital, swollen, slumped over in bed, attached to an IV pole loaded with bags and tubes.  She was wearing oxygen. 

“Mom!”

She woke from her doze, flashed the lovely smile that would stay with her right until then end.  “Hi sweetie.”

She was nauseated and had diarrhea.  Always the optimist, she would squeal “I think I’m shitting out my lymphoma!” Still, she perked up and she was discharged on time from the hospital a few days later, in plenty of time to celebrate Mother’s Day.

We filled the Houston apartment with flowers, and I bought her bright pink loungewear that somehow made her look young, almost like a teenager.  I gave her a journal I had started with some of my favorite memories we had shared, what I loved the most about her.

“Please write to me too!”  I entreated. I knew the odds were against that we’d share many more Mother’s Days, although I also didn’t anticipate she’d be headed to hospice a mere 6 months down the road. Whether or not she was cured, I wanted to hang on to everything. I wanted to be able to run my fingers over the paper she touched, see her handwriting, memorialize what we shared, fill in the blanks of any forgotten detail.

“Of course!” She was always polite and agreeable.  But she never wrote a single word in that journal.

We made plans to go out to lunch at a café near the Woodlands, a rather-contrived shopping and residential development north of Houston.   It was busy there.  My mom was tired after the car ride, and Grandma was cranky.  There was a loud, bustling energy in the place which didn’t quite fit with our weary and stressed out group, but we did find a table and sat down. 

“You should have a mimosa!” I encouraged. This was a special day, her special day.  Nevermind she had just been blasted with 4 days of chemo and had constant low grade nausea.  That should step aside for what was suddenly an important holiday, right?

I ordered her one, and to her it tasted awful.  I made the bartender re-mix the drink (“you need to make it very mild” I ordered with a snotty tone). Still, things were different now, and she couldn’t enjoy what she used to, even if it was very mild. She was tired, she was diminished.  Between the toxicities of treatment and the fact that her cancer incessantly marched forward after only a brief stumble from the onslaught of chemo, lymphoma was starting to get the best of her.  Mother’s Day was before the series of terrible setbacks that defined the summer, before we knew just how resistant her cancer was, how hopeless the search for a cure would be.  But it was when I perceived the slow fade that I hoped was simply chemo side effects (“she’ll bounce back for sure, right?”). It actually was the quiet, whispery beginning of the end.