Thank you. I need you.


April 2017

With my cognitive processing issues (speed, coherence, time/location disorientation, stars, happy thoughts, blue bubbles, wet dog nose interruptions and such) writing is becoming a challenge. Spontaneous napping has been my response to cognitive overload and I really do enjoy laying here on my scrumptious couch and meditating on the people around me, all of this love and wisdom and presence and connection encircling me.On really emotionally heavy days — like when I talk our daughter through her summer internship choices and remind her how my death can and will impact how each of these choices plays out — or when Francois and I have to actually pick up the phone, talk to some stranger at Sunset Hills Funeral Home about arranging a meeting to discuss my funeral arrangements, every muscle move, every micro-decision, becomes a pull against hard stale tooth shattering taffy

On really emotionally heavy days — like when I talk our daughter through her summer internship choices and remind her how my death can and will impact how each of these choices plays out — or when Francois and I have to actually pick up the phone, talk to some stranger at Sunset Hills Funeral Home about arranging a meeting to discuss my funeral arrangements, every muscle move, every micro-decision, becomes a pull against hard stale tooth shattering taffy
So there is a loving, warm pull of my own small space, my bed, my bathroom, my puppy, my lover, my soul-mates (Suzy Club!) It’s a small flicker of a candle flame cupped in my hand. I really need massive amounts of time to myself.

It’s a small flicker of a candle flame cupped in my hand. I really need massive amounts of time to myself.

I really need massive amounts of time to myself.

And at the same time, I really need you. Every small thing you do surrounds me with warmly colored emotional echos, brightly colored shadows of human forms layered against each other, a tissue paper collage of love.

The beautiful flowers from these amazing soul driven, heartful colleagues. Spring flowers always capture this moment of beauty that only a poet, I think, come close to expressing in words. I’m no poet, so I’ll just say thank you. They make me so happy.

Lately you’ve all been answering my small heart-soul requests in rather mystical ways. I really wanted a piece of jewelry to give my daughter that she would keep forever. Something unique, but young and subtle, something local and related to her passions (beauty, justice, passionate commitment, strength,…) but enduring, sturdy.
I tried looking for this on my own. I didn’t have the stamina.
I’d given up.

Then, suddenly, in a care package put together by my colleagues I discovered a pair of locally made earrings, a dance of metal in action befitting the strength of my daughter and the elegance of her womanhood. There were cards and flowers. And a check that was uncomfortably generous, but ended up filling a very precise emotional need I did not think could be helped.

My daughter works very hard and uses the resources available to her wisely. This put her in the enviable position of actually being granted every high school junior internship and acceptance to every summer science program she applied to.Some of the programs are paid. Some cost money. One of her highest preferences, of course, is an internationally recognized program…that costs money. Quite a bit of money.

Some of the programs are paid. Some cost money. One of her highest preferences, of course, is an internationally recognized program…that costs money. Quite a bit of money.

It’s part of the reality of the world and college is about learning to navigate values and resources. It’s not a big deal. We are lucky. We have access to amazing opportunities and resources.
But there is a small emotional twist with us.We could stretch hard and make the summer program she desires work. If we do stretch hard and we get her into that program, she’d be off hiking the mountains of Colorado with Physics scholars for an entire 6-weeks. For François and I, it’s a dream come true and we want to give our daughter that opportunity.

We could stretch hard and make the summer program she desires work. If we do stretch hard and we get her into that program, she’d be off hiking the mountains of Colorado with Physics scholars for an entire 6-weeks. For François and I, it’s a dream come true and we want to give our daughter that opportunity.But for her, she has to weigh her choice with a hanging judgment about her role as a daughter – Is she abandoning her family?  Burdening them in a time of need?  Her choice requires a gamble on when her mother’s going to die.  How does a 17-year old come to terms with that? How do any of us live in anticipation of a loved one’s death?

At the exact moment we had to make this tangled choice about personal interest, financial interest, parental entanglement…and death and regret… At that moment we received a check from my Bellevue College colleagues.  They’d held a fundraiser and suddenly I could tell my daughter that my colleagues had raised money to cover the summer and she only needed to worry about what she wanted for that summer. She didn’t need to worry about us.

I think we ended up in the same place. Delphine will stay in Seattle and not go to Colorado. But she’s doing so because she chooses to, whether that’s because she wants to spend summer more available for me or for other reasons, it’s her personal choice and not an effort to spare someone else.

Wiping a tiny bit of the guilt and resentment tangled up in a mother’s early death is such an amazing gift.

Thank you.

With this kind of emotional light, there are no bad days.

(But I do have to admit there are good hours and harder hours.)

THANK YOU.

 

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I lost my dog.

I lost my dog.

I’d taken him with me to my appointment with my oncologist (he waited in the car during the appointment) and when I drove up into my driveway, I opened the door for him to get out of the car and then sat there for a couple of minutes, mindlessly scrolling through my inbox on my phone.

Sometimes I sit in my car while it’s parked in the driveway.    I return from some errand and I just sit there.   It’s like this pause between movements, where the conductor still has her arms raised, her baton pointed, but the music is sliding away. When I was momming, working, wife-ing and otherwise engaging with my communities fulltime, it was a stolen fermata, a space to breath alone for an indulgently long moment.  More often, nowadays, it’s a space for gathering the courage to lean against the inertia of fatigue.

So yesterday, I take my pause and I get out of the car.   Immediately I hear it.

Stillness.

There’s no wiggling, winding, grunting labrador trying to tangle himself in my legs.  No barking at unseen predators in the woods beyond out property line.   No thumping bumping sound of galloping paws on bark mulch.

I am stunned.

That dog never runs off, especially silently.   But I hadn’t put his invisible fence collar back on yet.

I call.  I yell.  I looked over the perimeter of the yard.  15-minutes and there’s no response.

I realize that I can’t really trust I’ll be able to get back up the hill to our cul-de-sac if I wander the neighborhood looking for him  And even though I know he’s a sweetie, he’s a big, dark furry presence who gets excited by other people’s fear and he can drum up quite the barking storm.  He could definitely scare a neighbor.

What if he gets hit by a car?!

So I send out an email to our neighborhood list.  Within minutes I have neighbors responding online that they’ll go out looking for him. While they search I sit there helplessly at the front door.

All sorts of conspiracy theories are building in my imagination.  He was stolen!  Dog-napped!  Someone is getting revenge for his barking!

It’s been a surreal morning.  I’m tired enough now that I have to make some real choices about work.     But working in this position is really great.  If I let go of this job, I’ll probably never get it back.

My feelings are so tightly twisted and tangled.  They feel like a huge, hard, growing mass pressing against my stomach and lungs, pushing out against my lower back.

Not knowing what is happening causes me to imagine all kinds of horrible things.   So I realized I really need to know the answers, even if I’m afraid to hear them.  It was a morning for answers I had already heard, but needed to digest again.  I needed my oncologist to tell me again.

Yes.  It’s very likely I will die by the end of June.  Yes.  We are trying very hard change that.  Yes, there’s always hope.  No, realistically, there’s not a high probability that we’ll get much more out of this body.

I’m relieved.  I like having a plan.

And I’m suffocating.

So I make air.  I blabber at the doctor about painkillers and politics, not even making sense to myself.

And the dog has been stolen.  I call my husband.  I’m the distressed wife needing his rescue.

“You have to come home!  Fudge is missing!”

Maybe he’s been poisoned.

You can feel it in the silence.

Fudge is gone.

I can’t even remember if his tags were well attached to his collar.

A neighbor walking her dog makes her way up the driveway.  She’s one of the people who reached out and offered to help go look for Fudge.

As she passes my minivan parked in the driveway, we hear it, his thumping and bumping.  His bark.

Eagerly, patiently, quietly waiting for me to let him out.

 

Thank You

There is definitely some humor in recreating the dining room scene from Monty Python’s The Meaning of Life.  Watching Francois spin in circles as he looked for a receptacle, any receptacle, to catch what I had motioned to him was coming, definitely amped it up.  But the problem with this spontaneous restaurant vomiting episode (and no, no other customers were harmed in the making of this scene.  We were the last clients at the Sleeping Lady Resort’s Kingfisher Dining Hall.), the problem with this episode is that it was clearly about my liver getting so large there was no room for my stomach, or more specifically, those last two Tablespoons of Chamomile tea I sipped down.  And then slupped up.

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My 80-year old aunt visited this weekend from Lancaster, PA.    We visited the Chihuly Glass Museum in Seattle and ate at Collectibles restaurant.  We visited Pike’s Market and hosted a crabfest with my nearest and dearest.  We even ventured on a walk into the wooded, hilly, park in our backyard.  Hanging out with Aunt Shirley is always a treat.  She’s the aunt who wrote me hundreds of letters while I was traveling in college.  When I was a middle-schooler, she sent me the very best books to read from her lovely bookstore.  She married into the 50’s culture and joined my mother in helping to ensure her children, nieces, and nephews marched towards the 21st century.

Hanging out with Aunt Shirley for three days was my exact energy match.  I’m 80 years old now.

Except I’m not.  It turns out her heart was failing while she was here.  They had an emergency procedure to put in a pacemaker the day after she returned to Lancaster.  Ha ha.  So I’m an equal match to my 80-year old aunt in the middle of heart failure.

There’s something comical in that!

I misjudge how weak I’m getting.  I think it’s because my lovely family and friends make me feel so alive and present.   Francois, Serena, Ramona, Medora, Janis, Breck, and from down in Eugene, Kaylea, my core group, the ones who are there supporting me so often I don’t even notice I’m being supported.  They ones who create a family holiday, with hearty laughter and just enough kid chaos, out of any weekend dinner.   The ones who send a text cartoon, a hello-how-are-ya, without really needing a response.   And let me have a weekend off completely from socializing when I need it, too.

And it was all so easy.  The generosity of my aunt, and my cousins for supporting her in this, let me finish a few edges of chaos that still hung around the corners of my life, layers of mess created by years of overextending and quite a bit of willful neglect.  Now, after fixing all the broken and worn out spaces in my home,  I had my house and garden cleaned!   (It’s amazing how much easier it is to have visits when you don’t have to be afraid of what the kids might step into, outside — or what the guests might find in the kids’ bathroom…)

Francois and I just came back from a mid-week trip to Sleeping Lady Resort.  The trip was made possible by Breck and Ramona, who came to live at our house with our kids while we were gone, and Jana and Dave Gordon, who’ve become my neighborhood backup family for Paul.

Maintaining intimacy in a marriage over 25 years is hard.  Then add kids.  Then add cancer.  Then add terminal cancer.  It takes some mindful intention to create spaces long and nurturing enough for the kind of unfolding we have to do.

It’s been a lovely week of soft, messy cotton sheets and sunlight gardens.

And very small sips of tea.

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It’s All Good

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On Tuesday, lifting my body out of sleep was like pulling a thick wad of sticky taffy off of a sore tooth.   Each step pulled.  The ascent up the stairs necessitated a brief head-in-crossed-arms lean on the kitchen counter.

It’s a “good week” cancerly speaking.  It’s the third week in my three week Doxil chemo cycle, the week I’m more apt to have energy.

But yesterday was my PET CT scan fasting day and this morning I’m out of gas.

At the hospital, I’m sorely tempted to stop and rest in a Starbuck’s chair on my way to Imaging.  These chairs are less than 100 feet from the imaging entrance.  After the scan, I decide I really need to eat before trying to drive back home.  And while I wait in line at Starbuck’s, I wonder why they don’t have benches where we-of-the-weak-kneed-desiring-coffee-and-croissants can sit and rest while our lattes are brewed.

One of my soul-sisters, Michelle Andersen, is coming over for lunch today.  She calls me while I sit with my latte and digest my croissant.  “Want to meet now?  I’m done early.”

“Sure!  I’ll be back in 20 minutes.”

I’m thinking, “It will be OK.  I don’t have to talk.  Michelle can do the story telling.”

One digested croissant, a latte and a quick pain med and I’m good to go.

I’m so talkative Michelle can barely get a word in edgewise.

It’s a delightful morning where the spaces of time, context and geography that have separated us so often melt away.  We’re as close as two young international students in Germany, cleaning houses for food money and living off of rice, chocolate, cheap champagne, and ice cream.

When she leaves to pick up her kids from school, I’m so happy.  This is a good moment.  This is a good day.

On Thursday, I’m having a good day.  I wake up feeling well rested, right before the alarm goes off.  My empty stomach is calm, so I eat and drink whatever pleases me for breakfast.  At work I’m focused and efficient.  I’m able to write up proposals and draft some training curriculum with ease.  I feel the benefit of my experience.  I have the answers the tutors need that morning.  I’m able to jump in and help students as we get busy.  When I leave my shift, I pick up my dog and we go to the dog park to play.  I throw the ball way out onto the lake and I feed the dog French fries as a treat.

That dog will do anything for a  French fry.

Today is a good day.

On Saturday I feel good.  I spent most of Friday napping, so I’m the parent in the best shape to get up at 5am and ensure our daughter is up and ready for her Robotics tournament.  She was, of course, up and ready before my alarm went off.

I come back and crawl back into the warm bed with my spouse.  We sleep another three hours and then make love in the quiet of our morning house.

I run errands.  Costco is a breeze.

I arrange playdates and Paul spends very little time on any screens.   It’s a good day.

Friday Paul and I were supposed to take the train to Leavenworth, a crazy overpriced German looking tourist trap village in the mountains near Seattle.   We were going for the train experience.  But the train was delayed 12 hours.  It’s the reason I had time to take so many naps that day.  We hung around at home and hoped the train would run the next day on schedule.  We both wasted too much time on our screens.   I felt pretty good, cancerly speaking.  But Friday wasn’t such a good day.

Saturday evening Paul and I wait for our train departure.   It’s delayed a mere three hours, but because the coach seats were sold out, we’ve booked a “roommette” so we’re kind of excited to get time in the bunks.

And then I see the letter.  The rejection to my Doxil treatment from my insurance company.  My stomach turns and I feel my anxiety rise.   They are arguing, again, that the heart-poisonous nausea inducing bald-making Adriamycin is good enough for me.  I don’t “need” the gentle (expensive) stuff.

I’m getting angry.  I’m tired.  I’m frustrated.   Internally, I’m getting a bit stormy and dramatic.  Should I switch to Adriamycin, suffer and then sue?  Should I switch treatments all-together and have my friends and family sue the company after I’m gone?  This is one of the last treatments we think might be effective.

Today is starting to feel like a bad day.

But then my PET CT results come in and there’s progression.  Yes.  My cancer is spreading.

I’m relieved.  There’s no need to fight the insurance company, to wonder “what if?”  and “what then?”

Things are pretty clear.  Doxil isn’t working.

So I call Amtrak and I order a sleeping car room for the way back, as well.  What the heck.

We’re going to have fun.

So now we sit in the beautifully renovated King St Station and we wait on beautiful hardwood benches.  The benches make my back hurt a bit. But Paul and I take selfies.  And even though the train’s been delayed yet another hour, we’re happy it’s leaving at all.

 

It’s a good day.

Calm Weather Storms

Have you ever fallen into the perfect sleep on the perfect bed?  Where the sheets are so soft they blur into the edges of your own self?  Where the mattress so comfortable you no longer know where you are in it?  Head at the feet?  Feet to the side?  On your tummy?  On your back?  The room temperature is so perfect you can’t tell if your feet are tucked in or hanging out.

There’s a fog that rolls in at twilight on the Oregon coast that makes that tactile effect visual.  It’s calm and enveloping, relaxing and reassuring in its ability to erase horizons, borders, shorelines and landscapes.

The feeling of dying I had was like that Oregon light with the comfort of that perfect bed.

I was standing in perfect comfort in an indisguishable light, feet resting something between sand, water and air.

And now, with our new treatment plan of Doxil, Xgeva and Neulastra, I feel my feet pushing, again, against a solid surface, my eyes discerning shapes on my horizons.

Moving out of that light space is like pulling myself out of that perfect sleep on that perfect bed.  It’s like moving from silent, nurturing float on buoyant salty waters into a saturated sand that sucks at my sinking weight.

It takes so much effort to walk back onto that shore of the living.

Today…

is day 3 past my Doxil chemo with my Neulasta supplement.   Today I can’t imagine making it until summer.   Today I plan my transition at work and encourage my colleagues to start looking for my replacement.  Today I’m not sure I’ll see Spring.

Today…

is day 7 past my Doxil chemo with my Neulasta supplement.   Death no longer feels like something I stand (float?) in.  I walk along the shore.  I enjoy the view.  I feel the sunlight.

I breath more easily into my ribcage.  Certainly, my liver must be less swollen.  Today I take naps because I want to.  Not because I have to.

Today I get take out pho because it’s fun, not because I can’t stand the idea of cooking.

Or so that’s what I say to myself, today.

Today…

is day 10 past my Doxil chemo with my Neulasta supplement.   Today I can’t imagine making it until summer.   Today I plan my transition at work and encourage my colleagues to start looking for my replacement.  Today I’m not sure I’ll see Spring.

Today standing up too quickly makes me breathless.  I sit down on the toilet (seat closed) to rest while I brush my teeth.

Today…

is day 12 past my Doxil chemo with my Neulasta supplement.    I invite my friends over to help me unpack those final boxes still packed up in the garage because of our remodel last year.  Today I trip over shoes and fall down in the garage.  I yell FUCK FUCK FUCK with a ferocious, energetic wind of pain and surprise.  Today my neuropathy sucks and I am thrilled by the energy I have to be so upset about it.

Today I am an open walled house and my emotions blow through, bouncing against the room corners of my own fears, funneling into my projected grief.  Today I hide from my dear cousin Kerstin’s reach from the East coast.  Today I storm at my spouse and tell him he’d better leave for awhile because I fear for his safety.  Today I blow tears of resentment at my best friends Medora and Janis.

And today they respond by bringing me flowers and chocolate.

Today…

is day 18 past my Doxil chemo and my Neulasta supplement.  Today I finish three projects at work.  I sit and help a student working on a high stakes application but terrified to mention her religion or ethnicity because her family is from one of Trump’s banned countries.  Today I make a difference because I have what she needs, today.

Today…

is day 3 past my Doxil chemo with my Neulasta supplement.   Today I can’t imagine making it until summer.   Today I plan my transition at work and encourage my colleagues to start looking for my replacement.  Today I’m not sure I’ll see Spring.

Today…

is day 7 past my Doxil chemo with my Neulasta supplement.   Death no longer feels like something I stand (float?) in.  I walk along the shore.  I enjoy the view.  I feel the sunlight.

I breath more easily into my ribcage.  Certainly, my liver must be less swollen.  Today I take naps because I want to.  Not because I have to.   Or so I tell myself.

Today my daughter asks for help on an application.  I’m so happy to read her writing.  She’s complex, insightful, focused, analytical, self-aware and honest.  Today I see me, 50 year-old wiser me, in her.

Today I’m hopeful and happy.

And when she says we need to stop at 10pm so she can work on her essay due at midnight, I’m grateful.  My body is screaming for sleep.

Today…

is day 10 past my Doxil chemo with my Neulasta supplement.   Today I can’t imagine making it until summer.

Today one of my best friends suggests planning a big girls’ weekend, maybe to northern CA.  I raise my eyebrows and look at her with a long face.  “What would be your goals?”  I ask.

Today I’m overwhelmed by the idea of effort.

Today…

is day 12 past my Doxil chemo with my Neulasta supplement.   Today I think a trip for the girls sounds like fun.  Maybe something local.  Maybe something that doesn’t bankrupt my family.  We could do this.

Today I take a nap and fall asleep so hard that I forget who I am for a  moment when I wake up.  It makes me wonder if dying just feels like forgetting to wake up.

Today…

is day 18 past my Doxil chemo and my Neulasta supplement.  Today I can’t imagine not living at least another year.   Today I call my lovely aunt and convince her to come visit.  I plan an Easter visit with my soul-sister cousin.  I book a weekend trip to Leavenworth on the train with my darling 12-year old.  Today I book a spa weekend for my husband and I to Sleeping Lady.

Today…

is day 1 of my Doxil chemo with my Neulasta supplement.   Today I ask my oncologist about next treatments.  Y90?  Herceptin/Perjedta and Doxil together?  Today I’m certain that even though there’s a clear wave back up after each wave down, the up never quite makes that original starting point and I’m definitely patterning down.

Today I talk about how that hard lump in my liver, the one I can feel through the skin and under my rib cage, is clearly growing.

Today she says she thinks it’s actually a bit better.  She says we might not need to change treatments at all after the next PET CT.

Yeah.  Ok.  Maybe.

Today I schedule the next PET CT.

Today…

is day 3 past my Doxil chemo with my Neulasta supplement.   Today I can’t imagine making it until summer.   Today I plan my transition at work and encourage my colleagues to start looking for my replacement.  Today I’m not sure I’ll see Spring.

Today…

is day 7 past my Doxil chemo with my Neulasta supplement.   I’m enjoying this as a “good day” and reflecting that I guess I do know what “good days” and “bad days” mean, now.

Today…

is day 8 past my Doxil chemo with my Neulasta supplement.  Today I’m a bit tired.  But honestly, still feeling pretty good.  Today I know I’m supposed to feel overwhelmed with fatigue, but I’m doing OK.  Today my liver feels a bit better.  My lungs a bit less encumbered.

Today I think maybe I’ll squeak some more months out of Doxil.

Today…

is day 10 past my Doxil chemo with my Neulasta supplement.    The housecleaner I scheduled arrives.  A gardner comes and provides a quote.

Today I am supported and loved by my colleagues, who tell me they’ll make this work.  They tell me I’m valuable even if I have to work a bit less.

The dog park is accidently bathed in sunlight today.   It’s a nice break from the persistent grey rains of winter.

Today I travel down to Oregon with my close friend Medora, to see my sister.  I’m happy to see her.  I enjoy her and am so glad for Medora’s help in making the trip.

Today…

is day 11 past my Doxil chemo and my Neulasta supplement.  Today I definitely feel stronger.

And my family feels it.  I harp at my husband.  I cry about what will happen to my children in the future if he doesn’t start nurturing them.  Nurturing us.  Nurturing me.  (And who will nurture him?)

Today I think about what I know I could contribute to our faculty if I still had the energy.  I recognize that even though I love the team carrying forward and admire their wisdom and skill, I can see how my participation, my role, would still be important.  Today I see what I could be adding and I feel a sense of loss.

Today I go through old photos and videos and think about how active I was when my daughter was 12.  I think of how much I brought her, showed her, orchestrated around her.  And I feel for my 12-year old son.   He and I laugh about how he got the wiser parents, the parents who probably do less harm, but they’re a lot more tired and a lot less fun.  His eyes don’t laugh.

Today I start looking farther out onto the horizon.  I plan training workshops for tutors for Spring quarter.  I look for an acceptance letter, a chance to attend the Little Pink Houses program for families living with cancer.  It’s a week of family cancer camp in Key West, FL…way out in June.

Today I start mapping out the summer schedule.  When do Pascale, Simon and Etienne arrive from France and Mayotte?  What should we all do together this summer in August?

Today I think I might see the eclipse.

Today I’m taking my son to see Carrie at Bellevue College and we’ll try reading Stephen King again.  He was my favorite middle school past time.  But I’m thinking it might have been because his characters were so tied into the cultural reality I lived then.  It’s no longer my son’s reality, so his writing might not be as entertaining now.

Today I’m going to try and make French onion soup.  And today, I’ll be really really grateful for the pre-made slow-cooker meals Ramona and Breck bring over.    Because then I can take my nap, walk my dog, play with my son, and still feed us.

And today I realize I still have a full week of “good days” before the next chemo.  So I start wondering what I should do with the next ten “todays.”

Fourteen Days

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1/20/2018

I know I’m in shock.  I mean, I must be, right?

There’s a part of me that’s (WIERDLY) a bit excited.  For years we’ve been planning and training for this big event and it’s finally here.  :-/

I waited two nights before telling Francois because I couldn’t find a time alone with him that wasn’t right before bed, and I didn’t want him to lose sleep on a work night.

Here we are morning after I share the news.

Francois reads in our morning Seattle Times that the new season of House of Cards is due out on May 20th.

“Maybe you’ll get to see it?!”  He exclaims with genuine, empathetic excitement.   There’s a softness under the excitement in his voice, an intimacy of quotidian knowing mixed tenderness leaked from 25 years of loving and sharing.

“Yeah!  Maybe!” I smile back, pleased.

We’ve spent 2 ½ years grieving and coming to terms with this impending death.  We’ve shared, cried and shed.  We’ve spewed our fears in sobs and tears.  Then we’ve picked them up, examined them, held them, worked them through.  We’ve said good-bye to so much, not in pessimism, but in a search for the light of love and living that is always here, always with us each day.

We’ve already let it all go, future dreams of old age, co-grandparenting, attending our children’s major life events.  We’ve found our lives here, in our daily present, precious and fulfilling.

Our daily patter has always included references to Franois’ future without me.

When our nextdoor neighbors move into a retirement community and the new family coming in installs a mother-in-law apartment for their aging parents from China, we try to imagine whether Francois will end up living with one of the kids or in his own retirement community.

I’ll tell him I’m leaving the bathroom remodel and downstairs bedroom furniture purchases to his next wife.

We talk about 12-year-old Paul’s graduation from high school and looking for colleges as Francois’ adventure.  We talk about his next trip to France as something that will occur without me.

And when it gets too close to now, like when I talk about our high school junior Delphine going off to college, he’ll sometimes push back a bit and says “you might live, you know.”

And I’ll say “yeah, maybe”  equivocally.

So receiving a new, rather firmly stated 3-6 months prediction from my lovely oncologist really doesn’t change much for us on that deeply intimate plane.

She informs me that stopping treatment is an option, and that although there’s not research available in breast cancer, with other cancers, patients at my stage of treatment (7 lines of stage IV treatment, 5 chemotherapies)  often survive longer by stopping treatment.

Stopping treatment would probably give me less than three months  If the next treatment, Doxil, works (big IF there), there’s a possibility I could get up to 5 months on it.    She is extremely doubtful I’ll be here next year.

“Yeah, maybe” I think, equivocally.

I’ll try the Doxil.

 

1/21/2017

The To-Do list:

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So here is one thing that did change when my oncologist firmly warned that time on this earth is getting limited.   I finished the parting gifts I had long ago started for my family.  I started the finishing work on the photobooks I’ve been creating for the kids.

And as I go through my daily life, I notice little things that have to get done before I go.

  1. 6:14 AM Saturday, January 21st while preparing for the Seattle Womxn’s march.

    Again?  Teach the kids to plunge the toilet and clean it.

  2. 7:00 AM Saturday, January 21st after asking daughter if I can have my raincoat back for the Womxn’s march.

    Take getting a new coat off to-do list for Delphine. Let her have this one.

  3. 7:45 AM Saturday, January 21st after dragging the damn dog back into the house.

    Call a dog trainer and learn how to get that BARKING under control.

  4. 8:00 PM Saturday, January 21st after returning from the amazing Womxn’s March in downtown Seattle:

    Teach all family members to bring packages of toilet paper upstairs and put them in hallway and bathroom cabinets so WE DON’T HAVE TO RUN DOWNSTAIRS AND BACK UP WHEN THE ROLL IS OUT AND THE PERSON BEFORE DIDN’T REPLACE IT.

  5. 9:00 AM Sunday, January 22nd — Have I listed we need to train the damn dog NOT TO BARK?!
  6. 5:20 PM Sunday, January 22nd – Teach spouse to do more of the cooking and how to follow up with insurance companies

 

Ha ha.  I’m betting this list looks just like YOUR list, right?

 

 

1/22/2017

The To-Do List, Take 2

 

Francois and I took a two-hour hike up at High Point today.   The dog pranced and danced through the woods.  We talked through scenarios.

“What if Doxil doesn’t work and we’re looking at the less than 3-month timeline?”  I ask.

We count it out: February, March, April.

We both shake our heads.  April doesn’t work.  Delphine has her big robotics tournaments and then two weeks of AP tests in early May

“We could take one last family trip in February, during their break,” I offer.

“You want to take another trip?”

“Do you want to take a trip?”

“Where would you want to go?”

“Hawaii?” I ask.

“It would be terrible for Delphine to go in February,” he states.

And who knows if it would be any fun anyway, right?  I respond.  They’ll know why we’re going.  We’ll be adding more stress to their lives because of missed school, clubs and tests.

We decide to just ask them.  Let them think about what they think they’d like.  And we’re both so grateful for having these amazing two years with their amazing trips.  The “family trip” isn’t really something “left undone” if I go soon.

In fact, there’s very little “left undone.”

  1. I travelled with each kid and with my husband. We travelled extensively as a family.
  2. I’ve feel connected to and present with my family (Kaylea, Kerstin, Shirley, Pascale and Family, Jerome and Family, Monique and Rene, Tom, Travis, Jon), including my chosen family (Serena, Ramona, Janis, Medora, Breck).
  3. I’ve feel reconciled with many of the people I cared deeply about in this life, but didn’t, for many reasons, keep close to. I feel I’ve had the opportunity to sit again in their presence and express at least some of the gratitude I have for their influence on my life.
  4. I’ve shared embarrassing moments and philosophies around life purpose with my son. I’ve told him regularly how much he matters, how much I love him, and how proud I am of him.
  5. I’ve learned to hold back and give my daughter room to create and enjoy her own brilliance. Now that’s she’s approaching 17, she accepts, with a caring, patient smile, a small dose of my overwhelming and at times suffocating love and pride at times.
  6. My love, my Francois, and I have gradually erased me from our discussions of the future. We’ve collaborated on dreams and hopes for him and our children.
  7. Although I go to work each day, I’ve left most of the work community I was hired into. In gratitude, I watch them and their work each day.  I rest apart, proud of my participation in the committees and philosophies that allowed many of these special people to be hired.
  8. I’ve grown ever closer to my husband.
  9. My house is in OK shape. It will hold them safe.
  10. We’ve learned live in the moment so completely that now, with a firm end in sight, we are almost unconcerned. Because right now we are happy.  And this is a good day.

 

 

1/23/2017

To-Do List, Take 3

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We decided that we’re ok.  If I were to suddenly die tonight, we’d be OK.  And there’s a calmnesss in that, a floating feeling where the stream pushing us along is warm and shallow.

It’s in that space we begin listing things we could do, while we have time, to make the landing gentler.  And we begin to think through how our close friends and family might be able to help

We are choosing these volunteers from our in-city crowd and we’ve already people in mind.  There’ll be plenty of work and responsibilities associated with the memorial for the out-of-crowd town when that time comes.

  1. We will assign someone to finish my photobooks for the kids if they aren’t done in time.
  2. We will ask someone to research where we’d like to have the memorial and present us with budget options. We will need to create a “guest list” for this.
  3. We’ll request someone be my husband’s bureaucracy partner, to help him walk through all of the paperwork odds and ends linked to death.
  4. We need to learn enough about end-of-life financial planning to choose an expert who will really help, and not just sucker us for a commission. We’ll ask an expert friend of mine for help getting started here.
  5. We will cajole someone into scanning our love letters and pictures from before the age of digital cameras.

 

1/24/2017

To-Do List, Take 4

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My oncologist, Dr. Wahl, scheduled a time for Francois and I to come in and talk to her next week.  I’ve been going to appointments alone (because I like it that way) and she suggested I bring Francois from now on.  She wanted to ensure he had plenty of time to ask questions, so she scheduled us for Tuesday’s last appointment slot, prepared to stay late and steal from her evening time with her family to be present with us.  I’m pretty sure insurance doesn’t cover an hour of “spouse counseling.”

So we’re doing our work to prepare.  What do we really need to know?

  1. Honestly, how fast could this go? Will we have any warning?  Can I do a 4 mile walk two days in a row, feel great, and then drop dead the following weekend?  What will be the signs that the end is drawing close and how much warning or how predictable is the timeline from these signs?
  2. Will I become unable to care for myself? If so, for how long?  My mother and father were unable to care for themselves at the end.  They were severely limited in how much they could care for themselves for years beforehand.  On the other hand, our friend with ovarian cancer was only unable to care for herself for a couple of weeks.  And even then she could go to the bathroom, clean herself and feed herself.  She had hallucinations, though, because the cancer in her liver is what was killing her.  It’s my cancer in my liver that will kill me, as well.  Will I get loopy?  Will I lose some of my mind before I lose my life?  How much?  How fast?
  3. How often and in which contexts have you had patients request assisted suicide? What’s the process?
  4. How do we find a good hospice company? When do we contact them?
  5. What kinds of tasks will my nearest and dearest be asked to do? I know from my experience caring for my parents that caring for a helpless dying adult is not the same as caring for an infant.  Bathing might cause pain.  Turning the patient might cause pain.  Not turning the patient or bathing the patient will cause sores.  Feeding the patient might cause discomfort.  Not giving the patient enough to drink could speed up death.  Not enough morphine and the patient suffers.  Too much morphine and the patient dies.  Nothing gets better.  It just keeps getting worse.  And the weight of every small decision becomes life and death tangled with your own desperate hope for relief.
  6. Is it OK to ask you and the staff here who felt connected to me to come to the memorial?

We’ll keep adding to this list.

Now, I don’t want you to get all freaked out.  There’s a chance the Doxil I’m on will work well enough to give me another six months.

In fact, I told Dr. Wahl that while I could feel the edge of life and death in the preceding days, the day before my appointment with her, I suddenly started feeling better.

She responded that she was happy for every good day I got.

And what I thought, but didn’t say because I thought maybe I was delusional and in shock or something…  What I thought, was this:

ALL of my days are good days.

They just are.  And I’m grateful for them.

It’s not simply because I can mourn my own death and let go of a lot of the anxiety around it. It’s because I really haven’t had any pain or the kind of discomfort that would make me unhappy living.  Even that hard week of Xeloda had a lot of good in every day.

Today, I’m still working.  I am full-time mom-ing, complete with carpools, cooking and calendar coordination.  I go dancing.  I host dinner parties (but I don’t cook from scratch.)

I still march in the streets for social justice and walk with my beloved spouse and puppy through the woods.

And now that we’ve changed treatments my appetite is back.  My sleepiness is gone.  My face has filled out.  My hands and feet are less blotchy.  I can walk up two flights of stairs and not get winded.

But my muscles are still shockingly weak.  I can feel a hard tenderness in my liver.  I need to lean on Francois to walk uphill for more than 50 meters or so.

So, you know, who knows?  Live?  Die?  Now?  6 months?  Later?

I’m happy for today, my 936th good day living with stage IV breast cancer.

 

 

1/25/2017

I’m just not feelin’ it anymore.

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I had that cancer look, hallowed cheeks and a purplish hue around my eyes.   The back of my hands were stained and aged.    At the end of the day my socks would feel tight and my ankles more purplish than normal.

The  numbness of my feet seemed to be crawling up my shins.

I had food aversions.  Nothing tasted badly or made me ill, but my body would simply refuse to eat some foods, like a revulsion.  I could put some common, ordinary food in my mouth and would suddenly have to spit it out.

And even with foods my body liked, I could only eat small bites at a time.

But none of that felt like dying.

  1. Yes. I know that most people don’t make it through 5 different lines of chemotherapy (not to mention the additional targeted therapies we’ve tried!).

I am not delusional.

But what made the new announcement of less than six months unsurprising was more of a feeling, a metaphysical sense.

Death no longer felt like a drop off just beyond a horizon.

Instead, I felt like I was standing on a soft sandy shore toeing  calm, warm waters, an overlapping edge between life and death.

Transition is a gradual comforting place.

I was neither happy nor unhappy.  Just grateful for my life, my loved ones and the peace and comfort I continue to experience on this journey.

But I’m not feelin’ it anymore.

Moving from Halaven/Herceptin/Perjeta to Doxil has suddenly given my body some space to heal.  My hands are suddenly soft and clear of age spots and other blotches.  My eyelids are no longer darkly purple.  They match my cheeks and chin, bright and rosy on some days, a bit pale and pasty on others.  My socks are no longer tight.  My shins aren’t numb.  My toes move.  My fingers type and carry coffee mugs without spills.

And I can no longer feel that shoreline underneath my metaphysical feet.

I’m gloriously hungry.  It’s a hunger of healing, like after my mastectomy surgery or the birth of my children.  EVERYTHING tastes good and I am eager to eat LOTS of it at a time.

I’m still on that beach.

But my body has found a space to rest a bit and heal, for a moment.

 

1/31/2017

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Francois and I have come back from our retreat at Harmony Hill centered, connected and emotionally open.  When we arrive at the Swedish Cancer Institute in Issaquah, there’s a lot less fear.  We’ve already opened the door to our shared death and the waves of knowledge that are waiting for us here will wash right through.

For me, at least.

I think for Francois there’s a lot of visualizing yet to do.  What will life be like as I die?  What will life be like after I’m gone?  There’s a lot of sadness to accompany that visualization.  Still, there’s less fear there and more intentional peering.

I know I look better and I know I’m going to rock the blood tests.  So I’m in good spirits.  And I’m happy having Francois there with me.

I think Dr. Wahl’s a bit happy as well.  I don’t look quite so cancer patient-y.  Doxil seems to be light on me for the moment.

This time she talks in the 6 month and maybe longer time frame.  She even mentions, with hesitation, 6 months to a year.

I’m getting pretty jazzed.

We even talk about my maybe making it to see the eclipse this summer down in Oregon.

She’s made time for us at the end of her very long day, so I come prepared with questions.  I asked her specifics about what a death from liver failure will look like.  No, there’s little likelihood of varices and the massive bleeds my mother endured.  Yes, there’s high likelihood I’ll lose mental function.  But this will happen at the very end, when I’m bed bound and in hospice.

This bed bound state will last a week or two before I die.

I’m happy at this news.  I want hospice to go quickly for my family and friends.  They’ll have enough time to be present, but not so much time they’ll be tortured by their own internal emotional conflicts.

Everything we talk about is reassuring, a relief for me.  And the entire discussion brings an unwelcome, unreal event right up to Francois’ sightline, over and over.

Almost nothing of what we talk about is really the realm of her oncology training.  We do have a few medical questions.  We want to know how she forms her prognosis and what might change it.

But most of our questions and discussion are about how to find grief counseling, programs that might help the children, and where to put the hospice bed.  I tell them I want to be in the middle of everything.  Dr. Wahl says this is a good choice.  It helps everyone be present with death without having to choose to be present.  She recommends taking the dining room table out and putting the bed there.

She is uniquely experienced and qualified to counsel us on this wide range of things, but I doubt she is compensated for that.  She stays late and keeps talking to us about these little details around death for almost an hour.  It’s nearly 7pm when we leave.  She’s missing her evening with her family.

But I think for us, having our DOCTOR talk for an hour with us about our death makes it gently real, more real with each mention from her, more believable because she’s our doctor.  By the end of the hour, we’ve kind of settled into our new reality.   Instead of pushing us off into our impending mortality with quick, clean announcement, she lays us carefully into it with long, soft, attentive discussion.

Francois leaves sad, oddly disembodied.  I leave happy, made light by the vision of seeing another summer.

Francois tells Delphine there’s been a change in the course of my disease.  He asks her if she wants to know about it.  She says not tonight.

Tomorrow is a sunny day.  We’ll talk about it then.

 

 

 

 

Harmony Hill (Couples Cancer Camp)

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I want to Facebook my experience here at Harmony Hill, but I can’t quite find a way to capture in just a few words how tender, compassionate, connected and true this space is. I suppose true might be the right word. True like a perfectly hung bridge or a musical note perfectly rung.

At first the gentle softness of the young woman who greeted us and showed us to our room put me off. Being treated so carefully and tenderly made me feel delicate and fragile (why do I judge myself negatively for that?) – and almost guilty about the strength and stamina I still (why proudly?) command.

The rooms are warm, both in texture and temperature. The people surrounding me all carry this centered soft focus. And within the hour I feel myself opening into it.

The food is amazing. Fresh kale salad that you would honestly choose over any other dish because it’s the most delicious and not because it’s the most nutritious. Spaghetti squash, roasted beets, stuffed squash… I don’t know where they found their cook, but WOW. Most of us are in some pretty harsh treatments for cancer and we’re all eating for pleasure here, way more than we’d ever have true hunger for.

At the first group session, a welcome session, Davhal, one of our facilitators, takes out a lovely wooden bowl. This bowl has been used in hundreds of gatherings like ours. Our job is to deposit something into the bowl, something we don’t want to carry with us this weekend. He assures us that we’ll have the opportunity to take it back at the end of the weekend if we desire, but we can also choose to simply leave it and walk away.

Only because I have permission to pick it up again before leaving do I decide to place my mental image of my children, or rather the worries I have about my children, into this bowl.

When the bowl is passed to me, I feel the heaviness, a there-ness separate from the mass of its polished wood. I pour my two children and that anxiety gently into the bowl and carefully pass it on.

I felt my children being carried away, covered with motherly angst and yet, simultaneously they were persistently there, clear and present within me, unburdened by my fears. They were clean, crisp, and clear, like the mountains we could see across the water, bathed in winter sunlight.

http://harmonyhill.org