Life and Death with Dignity

 

I started therapy with Hemlata Mistry because a couple of my behaviors had become unhealthy and I was at a loss when trying to change them.    Through good therapy and an open heart and mind, I healed.   I was in a state of mental health when I was diagnosed with Stage IV Breast Cancer in June 2014.   

The thing about healing, though, is that you can always get healthier.  And unlike our physical bodies, which are limited by the laws of Physics, we do not know how much mental and spiritual growth is possible.    Because of health care reform I have unlimited insurance coverage for mental health care.  So now therapy has become a kind of preventative health measure for me, a proactive move towards health as I walk towards death.   It’s a weekly workout with a personal trainer as we stretch, build muscle, in mindfulness, reflection, vulnerability and love.   

For my entire life, I have been privileged with easy access to communities of practice who devote themselves to this kind of work, scholars of humanity and social justice.   From the bold brilliant heart that attracts and has attracted me to my very best lifelong friends, to the discussions of language, power, beauty, justice and academic activism taken up by my scholars of the humanities, to the painful, frustrating, transformative work of social change marched forward by my colleagues,  I am surrounded.  I am stimulated.  I am moved.  Je suis eduque.

I arrived at 47 through a lifetime of reflection, some documented in a 7-page academic resume and others in the deaths, in the last decade, of friends caught by cancer in their youth.  The deaths of my own parents.  But the overwhelming majority of that reflection is captured only in the hearts of those who have engaged with me.

My legacy.

We are at a moment in our culture where modern medicine has created a space for reflective cancer survivors, a peaceful interlude for connection, intimacy, joy and gratitude.  Thanks to some amazing drugs and treatment approaches, we get to have some healthy, comfortable, cognizant time to connect intimately with our loved ones, ourselves and our mortality.   With communication technology, this has created a web heart and wisdom we can share.

My favorite shares this last month:

I really have nothing to add to what these writers have shared.  They each capture a sliver of this experience perfectly for me.  They hit a note that resonates, even generates some sort of harmonic internal peace for me.

But there’s an article I do want to talk about. 

It’s an article about a young Christian woman with Stage IV cancer, Kara Tippetts, who was documenting her end-of-life process as a spiritual Christian journey and, in parts, as a statement in opposition to the death with dignity laws supporting terminally ill people’s choices in Oregon and Washington.

Kara’s open letter to Brittany Maynard (http://www.today.com/health/brittany-maynards-husband-talks-about-letting-her-go-1D80424130 ) the very young cancer victim who moved to Oregon in order to benefit from its death with dignity laws, is the typical I’m-so-loving-and-empathic-and-understand-you-but-know-better Christian syrup that I get from “good” Christian neighbors who “love everyone, including the GLBTQ community” but state “marriage is between a man and a woman” or worse, claim to be “non-political.”  What they would probably call a practice in love is really a practice in rhetorical appeals.  It’s about appearing to connect at the heart in order to convince the reader that his or her own experience and wisdom is just not quite as elevated as the writer’s own.    At its best, it’s annoying but benign arrogance that sometimes leaves droplets of insight.  At its worst, it’s bigotry clothed in sheepskin, self-affirming tunnel vision.

But Ann Voscamp in her blog A Holy Experience writes really well about Kara’s death, vulnerability, intimacy, and connection in “How to Recover the Lost Art of Dying Well”  at http://www.aholyexperience.com/2015/03/how-to-recover-the-lost-art-of-dying-well-what-kara-tippetts-taught-us/

There are some wolves teeth in that lambskin.

There is a lot of what Ann writes that resonates with me and the reflective work I have been doing to nurture my own living relationships and prepare for my own death.   Just take out the “I know God’s will” stuff:

              She’d said it brave into the camera, the liquid  of her heart brimming like light in her eyes:

And I am not afraid of dying — I just don’t want to go.”

Her wondrous little boy, Lake, had curled into her in bed and he had looked into her eyes and whispered: “I don’t want you to go…”

Kara hadn’t wavered, she was 38 years old and the mother of 4 children, dying of cancer, and she hadn’t looked away — She nodded and stroked his cheek with the palm of her hand, like she could etch her love right into his grief.

I had choked it out last night before I turned the last light out:

“I feel like I am a kid still left at the party — and I’m at the window watching her go… watching the life of the party go.”

The strange hush about things now, in the wake of her really going, feels like a lingering holy.

Death is the mother of beauty,” Wallace Stevens wrote.

I don’t think I agree with him, but I wonder if death gives a frame to our life on this side of forever? I wonder if death is this gold frame, the gilded boundary around every life that makes it it’s own work of art. Without death, would our lives lose its very shape?

The frame around life, the death boundary around life, makes us appreciate every life as art.

We are in awe of breathing, of the gift of being, because it’s fleeting.

We love life more, the more we realize all this lovely life is transient.

Before I flew to Iraq a few weeks ago, I sat with Kara’s words, read them over and over again until I memorized them and they began to form me, words Kara told her Jason when they sat at the edge of the ocean together one last time:

I tell him it won’t be any time before we are reunited but for the mortal it feels impossible to understand the close distance of eternity.”

I tell Kara I will sit with this, fly with this.

And Kara tells me: “I will be praying for your travels — There is so much that makes us finite, but the gift of wonder we have been given over the infinite is amazing.”

Kara wrote me and told me — We must always have an imagination for the grace that will meet us.

She told me: Safe travels, friend.

Kara taught us all that: How to have an imagination for the grace that will meet us, how to unwrap the gift of wonder over the infinite, all this that has no finite end — how to travel well, right through to the end…to the end that ushers us into the beginning forever.

Kara had said that:When you come to the end of yourself, that’s when something else can begin.”

What does it matter if we know how to live well — but not know how to die well? Especially when dying is our last act of living here?

Our kids ask each other that sometimes, ask us that: “How do you want to die?

(Nobody gets to avoid that question– we are all 100% destined to die.) It’s a question we should ask from our pulpits, across our tables, on our pillows staring up in the dark, feeling the length of the night’s quiet.

One of our boys always answers the same: “I want to die quick, die painlessly, die in my sleep.” My father tells me often, he wants to die without being a burden.

It’s painfully poignant: We want to die any way that we keeps us from knowing that we’re actually dying.

None of us get out of life alive.

And in everything in life — we have to learn. People who live well, teach us the art of living well. And people who die well, teach us the art of dying well.

We needed someone to show us how and Kara taught us how to die.

Kara recovered for us the lost art of dying well.

Kara taught us that:

In our efforts to terminate suffering — too often we can be forced to terminate the sufferer — when we were meant to liberatethe aloneness of the sufferer, by choosing to participate in the sufferings — choosing to stand with the suffering, stay with the suffering, let the suffering be shaped into meaning that transcends the suffering.

The staggering truth is: Suffering is never a meaningless waste of your life, but a meaningful way through your life.

Sometimes the most painful chapters of our lives —- are the most meaningful chapters of our lives.

Suffering doesn’t have to destroy our ultimate life purpose, but can ultimately achieve our purpose in life.

The word “suffer,” it comes from the Latin that literally means to ‘bear under’ — suffering is an act of surrender, to bear under that which is not under our control — but beyond our control.

That is why suffering is an affront to an autonomous society:

Suffering asks us to ultimately bear under that which is ultimately not under our control — which proves we are ultimately not the ones in control.

And for many of us, maybe that can be too much to bear? More than we can’t stand physical suffering — we can’t stand not having unequivocal control.

And that’s what suffering does:

Suffering quietly begs us to surrender — so we can win a greater wisdom, a deeper strength, a closer intimacy.

Suffering says we cannot bear under this cross alone — we can only bear it, if we can bear depending on others…

If suffering is about bearing under — suffering is a call for us all to be a community to stand together and carry the weight of bearing under — only to find that we are all being carried by a Greater Love.

I took out the text where Ann spoke for God and told the reader, basically, that God wants us to die his way and not the way allowed by medicine.    There is a core to this text that speaks deeply to me.  I have been working with my therapist on exactly these issues – staying present with those I love, accepting the beauty of what I have and will lose and grieving for that, letting go of a need to control what cannot be controlled, celebrating life and how it cycles from order to disorder, refusing to be able to believe that a spirit of love nurtured by a life well lived does not move on somehow.

There is an opportunity for connection in the extreme vulnerability that will come with my death.  And reading this article helped me think through the spaces and places I can help co-create for this process.  I design a bedroom with a couch and bathroom – a space for sharing time and company, in times of silence as well as laughter.

I have lead a reflective life.   I think have learned to live “life with dignity” in many ways.  I can share deeply and intimately with my closest.  I know how to die with grace.  (I’ve walked with at least five other graceful die-ers in the last ten years.)   We could create a really good Lifetime movie out of all of this.

What Ann’s blog post has helped me realize is that there is a danger to dying with grace.  It can get…well, churchy.  A religious performance on this edge of sincerity, heart and hunger for public approval illustrating one’s exceptional worthiness….    I can pose for the photos, post uplifting insights to my Facebook account and my blog. 

Ann writes that people, not medicine, is what makes this “dying with grace” possible.    She’s talking about living with God’s choice about our death versus our Oregon and Washington access to our own, medically facilitated choice. 

But here’s the thing.    All of these people I’ve linked to who have posted about their growth and insight in these journey’s towards death are only able to do this work of writing and sharing because of MEDICINE.    

Especially in well researched fields like many cancers (including breast cancer), we survivors now have a diagnosis of death – and at the same time, this incredible gift of life.  We swim, we run, we play with our children, we vacation.  We reflect, we connect, we grow…because we are given by science this space of health and wellbeing in our sickness. 

These people’s insight I link to above wouldn’t be sharing books and websites and blogs were it not for medicine.

It’s not only science that contributes.  All of the academic fields of inquiry add to the insight we bring to creating this path of grace towards death.  Humanities (including religion), Social Science and Science all lead us to insights and practices that support a patient’s mental, emotional, spiritual and physical journey.  We have experts in care for the entire person – and more and more so, the entire network of support that person brings with them.

At the Swedish Cancer Institute, I watch each nurse come out to greet his or her patient in the waiting room as if that person were the only person that nurse treats or thinks about.  I am followed out the waiting room by a social worker who remembers my children and asks how they are doing with my new bald head.  I have a family there of caregivers, who show excitement at seeing me and hearing about my life – and graciously share the joy they are taking in their own lives.

This is not random.  It’s intentional, reasoned practice based on research and reflection at the individual, institutional and academic levels. 

Ann is right.  It’s about a call to community and a standing together.  But for me this is also about gratitude for the work others have put into creating this space of peace and this option for connection and reflection.  It’s about the medical practitioners.  The drug researchers.  The therapists.  The social workers.  The bloggers and book writers.  The politicians and healthcare reformers. 

I’m not saying there is no God or that God is not present in all of this.  I am saying simply that the wolf in the sheepskin here is the assumption that an individual can die well…that life with dignity is what makes death with dignity possible.  This smacks of the puritanical assumption that is carried along by people who claim they are “blessed” with a good life — chosen by God…As if there are those who are not blessed, not chosen by God.     If you don’t die “with dignity”…was it because you were not dignified in life?   Like we all need another thing to fail at!?  Now we can fail at death? 

It’s problematic for me.  I have this opportunity for a good death.  Kara Tippets and all of the other writers I’ve linked to in this post seem to be walking a good death, sharing a loving insight to the beauty allowed to us in this walk.   I’m not going to deny it.   And my White Western Lutheran cultural upbringing really loves to believe that my walk of death is something special, created by me and my choices and my work at self-actualization…just as Ann and Kara would credit their growth in God as a personal achievement.

These stories shared here are not the whole picture.  My story here is not yet the whole picture.  Death is traumatic and dirty and tiring and painful.  It’s my father in 2009, joints frozen solid, with bed sores seeping down towards his bones, gasping for breath for weeks and weeks as my mother cares for him.  That intimacy and connection provided by death is also the burden of deciding, minute by minute, whether cajoling another sip of water out of him extends his life or his suffering, whether a bit more morphine is killing him or supporting him – and whether we are doing so out of compassion or selfishness.    It’s sitting on his bed, next to his dying body, in companionship and love for hours at a time … then sipping so much cheap red wine that I vomit all over the sheets and have to move him, putting him in horrible pain, in order to change them.   My mother’s body, in the meantime, wracked with the stress of his care for two years now, has succumbed to a life-threatening throat infection that landed her in the ICU.

It’s hot and tortured.  It’s my mother in 2014 gasping for oxygen, clawing at her own skin, refusing food and drink, but sipping eagerly at the morphine.  It’s her mouth opening and closing, struggling to draw in air for a breath?  A word?  A sigh?  But ending with pursed lips and a look of frustrated consternation.  

Both of my parents died with grace – in particularly my mother.  They used the knowledge of their own terminal illness to makes spaces and places for connection and gratitude.  They lived mindfully and intentionally in what wellness they could find and nurtured the presence and connection they could cultivate.  They were able to do this because of science and medicine.  It allowed them the space and time for sharing spirit and heart…for growing.

But the final process of death itself is generally not graceful.  It’s full of vomit, blood, fever, oxygen deprivation, diarrhea, and pain.  It’s a water torturous process of life-and-death micro-decisions, an unending emotional exhaustion for caregivers. 

Grace is not about God’s choice of when to take you.  It’s about science provided options for how to keep you and your caregivers as present and comfortable as possible.

I have been reflecting and working mindfully towards a loving life for decades.  And I’ve had the privilege of access to incredible networks and communities to do so.   But dying gives me this platform and an audience…  an honorary degree in wisdom attracting well-wishers and patient readers.  But dying, after all, is easy.  Letting go and “finding grace” when there is no other choice left but to do so is  not really such an astounding achievement.

Living with someone you love at this sometimes torturously long death point…and knowing that you must live on, you must find a new normal, a new future, even as everything breaks around you, this is the real challenge.  Pretending it is graceful is a dangerous and damaging lie.

Take inspiration from all of these stories of terminally ill people finding growth and light and connection in their walk towards death.    But remember that it’s easier for we-who-know-we-soon-die to let go and be present because we have no responsibility to the future.   

Don’t pretend any of us can teach anything about dying with grace.  We can only teach each other how to live.

And I, for one, am  grateful to be in a state with incredibly advanced healthcare, including death with dignity laws…so that I can live as well as possible with my community for as long as possible. 

 

 

 

 

 
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Updates and Stats

The good news is that with a weekly chemo treatment that consists of Taxol and steroids, my life is GRAND!  I spend my days after chemo treatments travelling to visit old friends in Oregon, chatting and sipping cider until 1 in the morning, spending accelerated death benefits on impulsively FUN technology, hosting family, friends, and children for egg hunts, trampoline sword fights, corned beef and wine…and swimming and walking and laughing and working and loving.

My liver enzymes keep going down, so it appears the treatment is working there.  My strength and stamina keep going up, so that’s a good sign, too.  The steroids were a bit, uh, energizing!  So my oncologist took reduced the dosage.   I wasn’t surprised to feel some bone “twinges” come back after that.  I could feel the steroids kick out my bone pain that very first chemo session.  I left feeling SO much better than I entered.

The climb of the tumor markers has slowed, but not stopped.  It’s too early to tell if this is because of a lag time and we’ve yet to see evidence of the results or whether the reaction to this treatment, like all of the treatments we’ve tried, is mixed.  We’ll be doing another PET scan around April 23rd.

SSS-TTTT-EEE-RRR-OOO-III-DDD-SSS!!!!!!!!!!!

I have a new theory.  Everyone talks about how awful it is when your hair falls out.  Women survivors, medical professionals, caregivers… They’ll all tell you stories about the emotional turmoil.

Yes.  It’s big.  It’s emotional.

But what if it’s the steriods?

I mean, think about it.  Most breast cancer survivors start chemo for the first time with a cocktail that causes hair loss.  And that same cocktail is delivered with a nice strong dose of steriods to prevent an allergic reaction.

The first time I did steriods was with the TAC I did in 2008.  There were plenty of side effects.  Nausea, low blood counts, menopause — and then the constipating side effects of the drugs for the side effects.  I think all of that other stuff going on kept me from noticing the full effects of the steriod.   I had a bit of a rush and a drop with each chemo treatment, it’s nothing like the ride I’m on now.

Chemo so far is a breeze.  I have no nausea. No digestive issues.  No need for side effect drugs.  The first time, with Paul on vacation, I had a bit of numbness and some joint pain in my hands and feet that kept me on ibuprofen for a few days and for one single night, one single vicodin.  (The vicodin actually worked for this kind of pain.)

But the chemo itself and the steriod that accompagnies it left me feeling better when I walked out of treatment than I felt when I had walked in.

And life with a ten-year old in sunny February Californina is just grand.  We snacked.  We napped.  We played.  We relaxed.

Coming back to work, February in Seattle, baldness and fatigue was a bit of a come down.  So I am not going to say I approached the second chemo with much enthusiasm.

But Friday’s chemo was also really good.  No pain.  No nausea.  Just one dose of ibuprofen on one day for a slight headache.  

But the steriods?!!   Holy MOLY.

Steriods can be a complete mind-body connected fucked up experience for me.   Energy and emotions are a single entity, swinging so high up, so fast — and then right back down, with even greater velocity.

I was up at 4am on Saturday morning, energetic and relaxed, yet stupid as a goldfish.  What a waste!  But kinda fun, I gotta admit.

But by Saturday afternoon, I had Francois on a march of truth, where I listed every emotional stamp I’d been keeping about our relationship, his actions, his behavior, my needs…  Francois kept moaning “This is not fun.  I am not having fun.”

I told the kids to avoid me if they didn’t want to get constantly nagged about chores or personal habits.

Sunday my daughter’s rejection of me and my birthday cake sent me into a long sobbing fit.  I spent most of the afternoon sprawled motionless on the coach, watching my son devour one Harry Potter film after the next.

It was a funeral type fatigue.  You know, the complete and utter exhaustion you have after a very emotional event.

I’m still very emotional.  And it’s an emotionality that is tied with fatigue.  It’s very physiological and intertwined.  But I’ve learned some things.

Exercise.  Swim!  Get the body’s energy moving in the right direction again.
NAP.

And…hide.   I do not have a very practiced emotional filter.  If I get this emotional, there might be some boundary issues and transgressions.

It’s a good thing I’m good at apologies.

Bellevue Bobness and Baldness

Top Ten Benefits of Baldness
  1. You don’t need a swim cap.
  2. No embarrassing swimsuit line shaving issues.
  3. People give you spontaneous, heartfelt gifts.  All the time.  Everywhere.
  4. You don’t feel guilty spending $200 on makeup and earrings.
  5. Just tape down your nose and voila!  You’ve got a Voldemort costume for Halloween! 
  6. If there’s long hair clogging the bathroom sink, you can yell at your daughter about picking up after herself with complete confidence.
  7. When your bones hurt and you need help with your grocery bags, you don’t need to worry about the clerk resenting your entitlement issues.
  8. Showers can get done really really quickly.
  9. Water, air and hands touching your head becomes new, novel and delicious.
  10. You lose the Bellevue Bob privilege.
The first time I tried to write this list, I had a hard time finishing.  I’m realizing that while I love novelty and new beginnings, even in Cancer treatment processes, transitioning is difficult.

The entire family has been a bit shell shocked by the move to chemo.  Things become more real once that word becomes active.  And when we learned, after a good wrestling match with the insurance company, that I’d be starting with the chemo that causes hair loss, that weighed on us.  It’s been pretty heavy here in the Lepeintre household over this last week.

I’ve been binge watching medical shows like House.  (I have no excuse!  I have no explanation!  But I can tell you they do not have insurance issues there.  I also feel a sense of moral superiority when they have a patient with a 5 cm liver tumor doomed to die.  HA!  That is NOTHING, baby!  :-))

In general, I’ve been emotionally and physically constipated.

So when I went in Tuesday for chemo, and we had to reschedule again, I was feeling really quite down for me.

So I went SHOPPING.  Hair, make up, boots!  

Since I only have a little over two weeks of hair left, I decided to leave the Bellevue Bob and just trim it up.  I wanted to keep my son reassured during our upcoming trip to Disneyland.  I explained what I wanted to my stylist.  She responded “oh, like a pixie, but longer in front, right?”  Having no idea what a pixie is but using old just-fake-it-and-get-by habits, I responded “Yes.”

When she chopped off that first long piece up front, there was no turning back.  And I was ready to cry.  A bad day had just become worse.

I talked to myself through each snip, reminded myself that a change would be fun.  I visualized makeup and earrings and new leather jackets.

But in the end, I loved it.  I immediately loved it!

And I felt free.   Free.

Me.

I’m not a Bellevue Bob girl,  even though I’ve worn a bob for most of my 14 mothering years.   I’m not even blond.  Never was.

And despite having some great, ample ta-ta’s most of my life, I’ve never been a curvy girl,  Not really.  Not inside.

There was a moment, last Spring, after I’d gained about 40 extra pounds, where I decided I either needed to go get me a new set of boobs or lose the stomach.  The middle-aged man beer belly look just wasn’t working for me.

So I lost 40 pounds.

I’m  strong and quirky and smart.  I’m positive and insightful and appreciative of the gifts people bring.  I’m impulsive and distractable, manic, bossy, impatient, assertive and thrilled by novelty — new people, new experiences, new insights to how to be here in this life.   I’m funny and I laugh with good heart and goodwill towards myself and others.  I’m a bit self-centered, but I’m still a good friend.

I’m not nurturing or organized or thoughtful.  I miss appointments.   I forget birthdays, thank you notes, and Christmas cards and names.  I’m not tidy or consistent with house rules and chores.   But my children are amazingly well-adjusted.  I am culturally Christian, but not a believer in any specific religion.

But I get the model mom perks with this bob, micro-nods of approval in so many tiny ways and small spaces that it’s beyond my ability to illustrate it here.

I like those perks.  And I really had some angst around shedding them.

 In my English 101 class, we are reading the short story “My American Jon” by Chimamanda Adichie (http://thebinj.blogspot.com/2007/08/chimamanda-ngozi-adichie.html).  I have been pondering the sheer strength of her protagonist, Amaka.    She is a Nigerian woman, an immigrant to the US, who has been in a relationship with a White man “Jon” for two years.    In the story, we see overwhelming evidence of how small slights that measure her as less than or Other compared to White barrage her everywhere, all the time.  One of the many things this story describes is an addiction Amaka has to the privilege, the perks, this man gives her access to, even when these perks create racial microaggressions against her. 

In a crazy upside down way, one cancer perk is it’s ability to free me from the addiction I have to other emptier perks.

Now if I could just get this bald head a bit smoother looking quicker!!!  And…of course…some earrings…

Last week, when I asked if maybe I was passing, I was on to something.