Wednesday, September 30, 2015

We are terrible, mothers.

She was my first heart break.   That sunny June Thursday afternoon, during a family communion of tears and clasped hands over Pho in Seattle’s International district, we heard the news - extensive mets throughout my lungs, liver and skeleton, in particular my backbone.    That evening, watching my 14 year-old daughter at her 8th grade graduation awards ceremony, my heart broke into pieces and fell into sobs that extended to the bottom of my soul.   My beautiful, powerful, formidable daughter, a brilliant bud of personal power on the edge of what would surely be a bold, brave, flowering adulthood.   And I was going to miss it.  I was going to miss her. 

First I worried.  I fretted.  I needed to protect/arm/push/correct her…   Save her from the pain of losing me, prepare her for a life where all of her personal family relationships would suddenly be redefined and turned upside down, push her to mature more quickly,  correct my parenting mistakes, my flaws enacted upon her and through her….

She tried to reason with me.

“Mom?” she said that September, as she went off to high school.  “I’m sad you have cancer and I feel sorry for you, but it’s really your thing.  It doesn’t really affect me.”

It has taken me a full year to understand the wisdom of her words. 

My first response was to push harder.  I was more direct.  Taking her to lunch so I could confront her with my cancer.  Telling her that her dying mother’s request is that she seek therapy.  Forcing her on a mother-daughter trip to Oregon and pushing into her face the “wisdom” I wish I had known before walking my own mother to her death last November.

“It doesn’t matter what you do, watching someone die is horrible.   You will always think there was something you could have done differently or better, no matter how hard you try.  You will always feel a conflicted collection of love, frustration, fear, grief, guilt and even disdain towards your loved one as they die.   It’s just hard.  I want you to know everyone feels that way.”

My 15-year old’s face was frozen, her eyes blinking back tears.

I need you to do therapy because I need you to grow up more quickly, I tell her.   I need you to be ready to do your part to deal with how everyone’s needs are going to change.  We all need to be ready to be a bit more for each other.

(I want her to grow up more quickly so I can feel connected to her again, I tell my therapist.)

She has a big robotics meet on her birthday.  Parents are bringing food for the kids’ lunch.  I bring a couple of huge sheet cakes that say Happy Birthday, Delphine.  She’s so mortified she can’t stand to stay in the lunch line.  She walks out. 

I leave in tears so heavy I can barely see out the front windshield.  A piece of my heart has been cut out.

(I wanted to love her and all I did was hurt her, I tell my therapist.)

What are you so anxious about?  Why do you pick at her so much?  Asks my therapist.

I had thought of myself as proactive, forward thinking …mothering – not anxious and picky. 

My myth

I’m worried about her ability to be happy, to connect and nurture friendships at 15.  Who is really connected to anyone else at 15?


I see her joy and laughter in the company of her new high school friends, her dedication to her goals, her conscious, successful strategy on finding and nurturing a new community around herself.

I wonder in amazement (and annoying motherly approval) at her ability to analyze our relationship and communicate to me what she finds disturbing. 

This is not a young woman who will have difficulty nurturing and maintaining relationships as an adult.

My myth

I’m worried there won’t be anyone she’ll let hold her, to carry her when she sobs with grief.


I’m grieving that I am no longer the person she turns to to hold her when she is wracked with sadness or uncertainty.

My myth

I’m worried that she will not remember our good times. .  I worry that what we had when she was little, Camp Fire trips, our cuddles, our big birthday party planning sessions, our bedtime stories – our connection, my ability to hold her and calm her when nobody else could – that these memories will be overwritten by these middle school and high school years when I grasped and grappled and struggled to hold on to her while she insisted on growing up and unfolding into her own person.  

What if this happens?  What if she can’t remember that earlier us?  When I die, who will remember these precious memories I have of she and I together?  Who will keep them alive?

Nobody will.

And there it is.

Nobody will keep my own precious memories of my life with her alive.  Nobody will keep *my* memories of any of the relationships I hold dear alive.  Each person dear to me will hold their own memories of us. 

And that’s just how it is, in life or in death.  We each hold our own experiences and memories of connection, joy, sadness, grief and love.

Death doesn’t change this.

My memories, my experiences, are mine.  They live with me and they die with me. 

And so I mourn myself.  For the first time, I actively mourn the loss of me.

My memories.  My experiences.  My joys. 

I had been striving for this imaginary relationship with my daughter, an impossible relationship, where my needs and my losses where suddenly appeased and released by some imagined adult re-creation of that feeling I had when I cuddled her 2-year old head against my shoulder, a re-creation of the endearing connected love I felt for my mother as she passed on.

I move my mourning back to where it is centered, me.  And there I work it and release it.  I free her from my imagined needs.

And I see her.

This amazing 15 ½ year old whose ability to tap into her own honesty and insight allows her to now create writing pieces better than my own.  This amazing tenacious gritty academic who hungers for challenge and walks determinedly through her tough classes and heavy list of outside commitments.    This insightful and articulate observer of human relationships, this poised self-aware maker of her own future.   

I mourn her.  I mourn her because she is 15 and growing up. 

I mourn for myself because I am 48 and losing one of my babies to adulthood.

Not cancer.

And we are perfectly and authentically 15 and 48, daughter and mother, glorious, just as we are.  I’m perfectly imperfect at mothering.  She perfectly capable of being the whole, healthy person she is destined to be.

My issues with losing her are indeed my problem, not hers.    And cancer is not the problem.  Hers or mine.

Her memories are her memories.  Her future is her future.   Her path is her path.  Her losses and her joys will be just that, hers.

Maybe we parents are wrong when we moan and groan about our teens.  Maybe teenagers struggling for independence and identity formation are not “the problem.”

The problem is us, mothers.  We are tangled in our love and we are terrible.

And that will just have to be OK.

Wednesday, September 2, 2015

Hoisting the Cancer Backpack

It's amazing how easy it is to hike when you don't have to carry a pack.  The air seems lighter.  The ascents don't feel so steep.  

France wasn't just an amazing family trip.  It was a vacation from cancer.  

There's a cultural pattern to how Americans respond to evidence of my cancer.    People are open, up front, sympathetic, caring and forward.  My bald head is an announcement, a welcome sign to others who have walked the walk.  And I benefit so greatly from this cultural perspective.

But I have to admit it was nice to spend 5-weeks in France, where the only clue to other's awareness of my cancer was a little bit more kindness and respect.  The public reaction was so different from here that for five weeks, it was almost possible to believe I wasn't living with cancer, despite neuropathy that woke me at night and lungs that seemed to be on strike that first week.  

Coming back to the U.S. was like settling in again to a heavy backpack.  It's well worn and shaped to my body, so it's not uncomfortable.  In fact, there's a solidity in it.  It's weight reassures me of my strength.

But it's a bit heavy.

Wednesday, August 26, 2015

Puppy Love

Getting a puppy while in treatment for cancer is a bit like buying a puppy for Christmas.    There’s a clear and present danger of emotional magical thinking.    Of the families I know that have endured cancer or other terminal illnesses and ended up with the “cancer dog” about half of those family placements have ended up being successful.  (The other dogs were rehomed successfully and happily.) Illness gets bigger and demands on the people involved become overwhelming.   There just isn’t always the time needed to train a puppy well.

So in the last eight months, since we lost Moby, our horribly incorrigible and intimidatingly intelligent Beagle, I’ve been interviewing my dog expert friends, interviewing my cancer surviving friends and working a LOT with my therapist.  I have the time and the resources for a puppy right now.   But really, emotionally, why do I want this dog?

When my therapist asked this question, I cried.

When I talk about why I want this dog, it still makes me cry.

This dog will play with my son when I can no longer do it.  He’ll cuddle him to sleep.  He’ll attend soccer games and celebrate victories.  This dog will be the constant open heart my son’s own warm soul can connect to.

This dog will take walks with my husband.  He’ll sit in love with him at breakfast or as he works.  He’ll pull him out of the house and create that healthy irritating mess of living needed to bring him out of his own head a bit when the kids are busy with their own lives and he’s left with too many open spaces.

This dog will illustrate the nurturing power of my daughter’s discipline and grit.  She will be our leader.   And although her own school life will keep her too busy to do the work herself (and she’ll leave for college now much too soon), her consistent thorough thinking, planning and carry through will guide us all through the consistency and heart needed for good training.

Last year I bet on 12 months.  I planned for 12 months of health to enjoy travel and good friends and family.  I celebrated camping in Victoria, family at the Oregon coast, girlfriends at Whistler, friends and family at Teatro Zinzanni, couplehood in Hawaii, my son in Disneyland, my cousins, aunt & uncle in the Philly area, family and stage IV heros in New York, my daughter in Oregon’s Rogue Valley and my frenchie family in France.

18-months.   I’m going to assume I get 18 months healthy enough to keep training and caring for this puppy.   Puppy adolescence.

Because I’m not sure I’ll get enough healthy time to nurture my own kids through adolescence, I am going to pour all of my love and motherly nurturing into this dog so that he can keep pouring that love and nurturing back into my family after I am gone.

Thursday, July 23, 2015

The Purpose of Health

When a former student grabs my hands in the Bellevue College Writing Lab and begs me to come to church with her because she is CERTAIN that this will cure my cancer, I am touched.  I hold her hands tightly, look into her face and thank her for her care and her concern – her distress, her need to help me, to do something, echos deeply in her eyes.

When people came to me in tears, anxious and upset about the news of my diagnosis, I felt honored, cared for.  And I didn’t feel responsible for their feelings or burdened by them. 

But this is now.  Before my first cancer diagnosis, I was always quick to offer unsolicited advice, solve problems that were not mine to solve.    I didn’t see myself and others as being on different journeys.  I saw us all on the same path…with myself in a slightly better position on that path, so therefore something to offer everyone else.  My insight.  My path.

But it’s not my experience with cancer that helped me cure this.  It was my journey exploring my own Whiteness.  Learning about how my attitudes and behaviors linked back to my cultural privilege allowed me to learn to see people and be more present with myself.    Learning that my place on the pathway has much more to do with the systems and networks that allow me to move to good places than any kind of personal achievement, insight or behaviorhelped me stop preaching and learn to listen.  And now I am a better teacher.

When a peer parent gives me a book about her Christian God or another talks about her famous healer friend or a colleague tells me about mushrooms that can offer a miracle cure, I used to be annoyed.  Maybe it’s because that concern and distress wasn’t so deeply apparent in their eyes.  They looked confident and assured.  Annoyingly knowing about something they know nothing about – MY journey. 

So I’m still working on this privilege thing and my ease with self-centeredness.

It took me awhile to teach myself to think of all of the things people share as being artifacts of their own journey with mortality and loss.  And that changed everything.  The book of inspiring Psalms becomes documentation of a friend’s chosen path for her journey and learning.   The healer is a door into a peer parent’s deepest struggles with life and meaning.    The mushrooms, evidence of a colleague’s need to control her mortality through a food path to pure living.

Looking back on my blogs over the last year, I realized even the rants about pet peeves over irritating behavior are really deeply about me.  These are things I do and have done.  These are aspects of my culture and my identity that pop out at me now and irritate me.  Things I need to work on.

I am the culturally Christian woman who feels chosen and somehow uniquely blessed.  I am the evangelist who chose food as a means to cure my parents lifestyle addictions after their first heart attacks 25 years ago, to inspire my daughter with a sometimes unhealthy attention to food and exercise, and to control my own mortality.  

I remember when my mother planted an herb garden for me in my backyard.   She cleaned out a wooden planter, grey with weather and age, on the edge of my cracked and mossy patio.   Her herbs grew big and bold, overwhelming the entire box of plants and melting into the “natural” landscape of our yard, overgrown bushes, big old trees and a patch of brown crewcut lawn that has been more weeds than grass for years.   For over ten years now this little garden has supplied the fresh flavor I love so much in my meals and it seems to survive all abuse I can throw at it.  I’ve always hated gardening.  The yard was always too big, too out of control, too much work to even think about.  I would never be able to make it the manicured, mindfully constructed, neighbor impressing yard I thought I needed.   I love this overgrown herb garden in my messy yard.    It was the first time that I realized that gardening is not about controlling life, but nurturing it.

I am seeing a therapeutic masseuse to help deal with a strangely swelling right buttocks.   My masseuse and I share a lot in these sessions.  There is something about laying naked with another person’s healing hands on you that creates an immediate intimacy, a comfort in vulnerability.    For each thing I share, she shares back something equally vulnerable and personal.    She creates a story of her own journey next to mine. It creates a space for two full people.

She is currently working with three stage IV cancer patients.  She talked about how vibrant and special each of these patients is, how connected and caring, --and how unfair it seems. 

Death isn’t unfair.  And having cancer can be a great way to go, considering other options.   Many of us get to experience health and some amazingly intimate, happy time with our loved ones.
As humans, our risk of mortality is 100%, she agreed.  But with all of the work she has done with health, connecting the body, the mind, the heart – and growth.  She felt it so unfair that people who had attained such an inspiring place of growth and connection would have to leave us when they still had so much more to share.

Individually, I don’t make a big difference in the world.   I have my shining moments and some brilliance to aspects of my identity, but overall, I’m pretty averagely flawed at most of what I do.    My only impact is in how I connect with others and how they go on and connect.   

Maybe the purpose of all of that health, that internal growth and connective mind/body/soul work isn’t about controlling mortality.       Maybe health about something else than avoiding death.

P.S.  A mere hour after writing this post on an airplane headed for a long vacation in France I received news that my tumor markers have gone down yet again!    Way to blow a moment.  LOL.

Living with health AND your mortality pushed back a wee bit is pretty nice.



Monday, July 20, 2015

Loving and Living!

My days this summer have been filled with travel and outdoor adventure.    Good books have been more tempting than computer keyboards -- so forgive me for abandoning you all!   I will write more as we start our 5-week journey in France this week.  But here's a quick photo update of my summer.

In addition to glamping on Orcas Island, rafting the Rogue River, eating and watching plays in Ashland, and cheering on the women's team for the World Cup, the boys and I have spent five or six days playing at Beaver Lake and are off to Wild Waves today.    

We've not done a tumor marker test, but I feel great.  I did have to skip one week because of low white blood cell counts and there was that whole issue around breaking a tooth and needing to remove it.  I'll blog about that later.    I'm getting a "big" chemo, a dose for three weeks, on Wednesday and then taking off to France for five weeks.  I'll look at tumor markers and such when I get back.   For now, I'm focused on living these planned experiences.

More soon!

Friday, May 29, 2015

Day Drinking? Don't buy more than one bottle of wine.

Look at that!?   Descending tumor markers continue!    I'm now at a measure that is below anything we've measured since the day I was diagnosed, in June 2014.

And you know what I did?  I spent the Wednesday before chemo DAY DRINKING.  My Wednesday appointments had to cancel -- and I have a clear memory of deciding, upon hearing that news, that I would get a bottle of wine and do some light afternoon day drinking.

I had these magical thoughts... thoughts mixed with guilt and a sense of control.  If I drink, I will change the outcome of my tumor marker test.  If I drink, I will change the outcome of my liver enzyme test.  In testing my ability to change fate, there is hope and fear at both outcomes.  Control ....would that be wonderful?  And no control...isn't that freeing as well?  And I'm so fucked up about it all.

I thought my drinking the day before chemo would cause my liver enzyme markers to rise (they went DOWN!) or that I would make my cancer suddently flare (LOOK!  LOOK!  Taxol is working!)

But I didn't day drink because of these tests or appointments.  I was day drinking because with the consistent falling markers and the growing strength I feel in my body....I started trying to take action on the things that have frozen me.  I had a contractor come in and give me an estimate on the work I want done on the house before I die.  I met with a close friend who is producing some heartfelt work I want ready to present to my dearest and closest when my day comes.  I talked to her  about her own journey dealing with her father's death when she was still a very young and vulnerable adult.

Ramona Brandes just lost both of her parents.  She was talking to me about how she can get distracted by nostalgia while she tries to make progress on getting her parents' estate in order.  She described it as a distraction from the real emotions of loss and grief that lie underneath but are so much more disagreeable than nostalgia.

My journey, until now, has often been very cerebral -- nostalgic, even.  And almost a YEAR after diagnosis, I'm finally getting around to doing the REAL stuff to prepare for my death (be it next year or in ten).  I'm scheduling contractors.  I'm creating artifacts for my dearest and nearest.  I'm scheduling meetings with an estate planner.

To actually DO this stuff, rather than fantasize about it, is a completely different task.  There is avisceral response, a bodily vomit and angst that overpowers my cerebal desire to dabble in nostalgia.

Being human is complicated.

Monday, May 18, 2015

The Color of Hope

Novartis, a pharmaceutical company that produced most of the drugs that kept me not only alive, but growing, healing, playing and rejoicing last year, invited me to their blogger summit in New York City on May 5th.

The women and men representing Novartis at this gathering were clearly authentically engaged, inspired by the opportunity to work with these women whose lives are improved by their company’s work – and in this group, a small set of Stage IV and Stage III survivors who blog about their illness,  humbled and honored by the insight available to share.

Every small push forward creates a few months here, a few extra weeks there.  It adds up.  And the results are powerful.   Four of these women bloggers have been writing and reflecting on their illness for years – a privilege and a freedom made possible by the treatment options and high quality care available.    One woman has written and published a book.  Another is a Vice President of a national organization to support women living with advanced breast cancer.  Still a third runs an international nonprofit which funds start up research ($40,000 annual grants) in treating metastatic breast cancer.  

When we meet, we immediately begin sharing like reconnecting lifelong friends. 

“After diagnosis I went through what I call my REFORM period, you know, when I tried to drop all my bad habits,”  she says with a cocktail in hand, “but then I just realized I’ve got to live as me.”

“ME, TOO!”

Around the dinner table the bloggers bond over shared experiences.

“It’s hard to get people to understand what I’m going through.  I’m a sick person masquerading as a healthy person.”

All heads nod.   I’m nodding, too, despite my bald head.   (I’m the only bald survivor in the room.)

I ask my sister-survivors to define “sick” for me.  Did they mean that they feel ill or that their prognosis is grim?

The chorus from the table is that latter.  We all feel good.  We just know that given current treatment options available, we are all going to die from this disease.

We laugh and cheer.    We honor each other with respect and careful listening.   We share tips on managing alcohol and chemo.

Almost as a case in point, one of our Novartis leaders gushes next to me about how inspired she is by our optimism. 

I know the emotion she’s catching, the sense of sunlight and spring breeze that floats among us at that dimly lit formal restaurant table.    

There is a centeredness to each of us which clears the air of the usual social anxieties.  We are women who have unfolded the prospect of our own death and walked into it.  We wear our awareness – a heavy cloak that dampens all the social crap that usually clouds the air between people.  And when we have the time and space to be still with each other, the air between us becomes clean, light, uplifting and filled with life.

The experience of wearing this cloak is different for each of us. 

For the women heading up national non-profits, I imagine the cloak grounding them, providing weight to their step and measured thinking about their path forward.

For some of us the cloak can be a shield, a protection against misplaced priorities and pressures.  Shedding my ego fueled concerns before learning to wear my own death, felt precarious, fragile and dangerous.  Vulnerability felt like a raw open wound, skinless flesh.

The embrace of death swaddles me, calms me in my own soul and body.  It keeps my gaze focused on life and love at a present local moment. 

It’s like optimism without the frenzied hunger of hope.  It’s like gratitude without the beholden thank you.

It’s the exaggerated slow dip and pull of a spoon filled with incredible Tiramisu from your mouth.

Ich geniesse the act of living.

It’s a heightened awareness of the capacity for light, love, joy, connection, beauty, sorrow, pain and pleasure we are given in this world – and appreciation and gratitude for our humanity. 

I like the security of this weight.   I am content to walk with my sight on close horizons.  There is plenty of beauty in this space.  The laughter in response to my 10-year old’s humor.  The depth of friendship and admiration with my lover, my spouse.   The carefully hidden pride and wonder at my daughter’s emerging adult self. 

So when my last PET scans results showed, for the first time, a pretty uniform response to my latest treatment, I took pleasure in the joy that result and the following descending tumor markers brought from my friends and family. 

But I held tight to my cloak.  It’s a data point and confirms my plans for the summer will most likely hold firm.  But the horizon doesn’t shift much.  The path does not change course.

There’s a strange isolation I feel in the joy I watch spread among my friends.  

But then there were a couple of strange flappy arm and leg events that I knew would have to be reported to my oncologist.    It was unusually easy for me to share these episodes with her.  I had the worry (brain mets), but not the anxiety.

To not grasp at hope is not to be without hope.  While I walk with my gaze as present as possible, I still let the possible float – maybe I will see my son accepted into Bellevue’s International High School next Spring.  Maybe I’ll watch him start his new school in the Fall of 2016.  Maybe I will go with my daughter to get her driver’s license next March.  Maybe we’ll finally go on that mother-daughter trip that SHE would like.  

These hopes float like colorful balloons behind me, just beyond the periphery of my vision.

So the MRI scan of my brain was just another data point.  Another rock on the same path.  A possible detour towards the same horizon.

I held my cloak close to me and discovered that people can actually live long lives without their cerebellum.  There’s quite a significant  1-year survival rate for high functioning brain mets survivors when whole brain radiation is used as treatment.  

Same path.  Same horizon.  Just data.

No anxiety.

I felt light when Dr. Wahl called with the results the following morning.  Clear?  No mets? 



Wow. That’s really awesome.

And I’m damn grumpy about it.  It’s another steroidal weekend where my husband’s voice is irritating in its light, velvet French smoothness.  The swim suit clerk at Sylvia’s incurs my wrath for suggesting three times I’m might be happier with a more padded lap swim suit.   The poor young life guard gets the steely gaze of you’re-wasting-my-life for her inane  lockerroom blather.  The Pizza Hut manager gets a royal F*** over the phone, which puts my son in tears, mortified his friend has heard his mother’s inappropriateness.

I lay in bed on Sunday morning, in the sunlight with my partner and friend.  We talk.

Suddenly my cloak has fallen away and I’m grasping those balloons, I tell him.  I’m holding another family trip, a summer preparing for my son’s big journey into middle school.  I’m holding my daughter’s first teenage job and the image of driving her, maybe, just maybe, off to her first day of college in 2018. 

I’m unearthed, untethered, floating and turning.

It’s just as emotionally difficult to let the horizon shift out as it is to let the horizon shift in.  In my hands I hold those hopes for the future so tightly I fear they will burst with tears.

Slippery, maddening, glistening tears.

So today I will go and swim in the warm sunlight…because it feels like the color of hope.