muddy feet memoirs

Growing Kids, Raising Vegetables, Building Family & Facing Cancer

Happy Birthday Quinn, My Brave 12 Year Old

quinn and jay

Tomorrow we celebrate Quinn’s birthday – she asked for “Family Birthday Dinner,” which brought me nothing but joy to hear.  Every Thursday we celebrate Family Dinner – last week it was just me, Stella, Susan & Stan.  This week it’s all of us….  almost.  I’m so excited to have all the kids overnight for the first time in weeks.  It’s good to have my kids under the roof all together again.

quinn and jay2

Live Like Jay

Live like jay

Jay is dead.  He died early morning on Sunday March 23rd, 2014.  I have many, many blog posts in my mind – things I’ve reflected on during this past month – but today I have something more immediate to say.

Jay was the kind of person who made friends easily and kept them forever.  People were drawn to his warmth, his quick humor, his earnest interest in others.  Jay was a writer and moved people with his honesty and optimism.  People started looking up to Jay.  He had followers.  He influenced people and inspired them to live fully.  Our friend Mara found a picture online – graffiti on the side of a wall somewhere – that said “Live Like Jay.”  It became a Facebook phenomena in our little world.  People started using that phrase.  They took it to heart.

Living Like Jay means being a good person.  Choosing right actions.  Prioritizing family.  Being brave.  Being in love.  Finding the good in whatever we’re faced with.  Together we were each other’s anchor, each other’s reality check, and now I have to learn to Live Like Jay.  Or rather I no longer have him to talk to after the kids go down.  I can’t ask him to talk me out of a tree.  I am unable to lean on him as my moral compass…  I just have to reflect on those times and learn to do it by myself.

As I watched him die slowly – weeks went by – I bore witness to his process.  His life reflections, or his astral travel, or hallucinations – whatever you want to think.  I laid on our bed with my head at the foot, watching him from below as he pantomimed this process (his hospital bed next to me).  He enjoyed people’s company, broke bread and relished long meals, chose books to read, taught his children to cook, made grocery lists and menus…  his last weeks were filled with dreams of things that made up his life.  He was sweet and content.  It gave me some relief from the great sadness of watching him go.

It struck me, as I took notes at the deathbed of my true love, that this life may only have one single purpose – to choose love as deeply and as frequently as possible.  That our time here (oh yes, my thoughts on the afterlife developed during this time too) can be boiled down to how well we chose love over lesser things – money, prestige, power.  Kindness is a hard practice sometimes.  Honesty, integrity, compassion are easy for us to postpone for more immediate goals.  Being a good person is extremely under-rated.  Yet I wonder about the life reflections of people less content than Jay…  how their shame and hollow choices may influence their last days’ dreams.  We make our own hell, and I think that may be it.

I was immediately tested after Jay passed and I have struggled this whole past week, grappling with how to respond to an ugly power play by his ex, Erin.  She intends to take the Life Insurance in whole.  I was made beneficiary because she is manic with money.  Jay wants to see the majority of it saved for his kids for when they are entering adulthood – something he cannot help them do.  She will no doubt burn through it in a year.  She kicked him out 5 years ago but allowed him continued access to her health care – about 2 million dollars worth of it in the end.  Imagine how stunned I was to hear that she had called the mortuary the morning after he died to make claim to him as her “legal domestic partner.”  She wasted no time.  It’s disgusting.

And so there I was on Monday afternoon, March 24:  Jay has been dead for maybe 38 hours, I’m still surrounded by Jay’s dirty sheets, the catheter and wet diapers and empty pill bottles left behind after his body was taken from me in a big white bag…  and I’m faced with this selfish, mean, underhanded situation.

If I am to Live Like Jay, how?

I think of our kids.  Jay and I worked the entire 4 years of his cancer treatment to ensure a sense of stability for the kids.  They know that things are not as they were promised.  They know that being kept from me is not what Jay wanted.  I must model the behavior they need to see.  Animosity supports their life in no way.  I will be kind when I want to lash out.

I think of Jay’s optimism.  He wanted to see that money last for his kids because he couldn’t, but if it goes then it goes.  If Erin lights it on fire then the kids will know that.  Jay and I showed the kids how to live simply with joy and a love of good things.  They will always have that.  That is really his inheritance to them.

And I think of the love we had (and I still have).  I have lost Jay.  Nothing else can be taken from me – not of substance.  If the small amount Jay intended for me is available I will use it to support the kids.  If not I will still support the kids.

It is an easy vortex to get sucked into, when a person is trying to pull a fast one and treats you like garbage, but I choose to resist.  Every night this week I have laid on our bed alone, trying to pull my thoughts out of the smog of Erin’s tricks.  And then I remembered to Live Like Jay, and the smog lifted.

From Partner to Caregiver: Breaking Up is Hard to Do

dancing with death

For those of you who might think we’re the perfect couple, saints embraced, waltzing our way to the after life, allow me to burst your bubble.  I spent the day PISSED OFF at Jay – like “Go Fuck Yourself” pissed off.  All because of something he said last night – something he has no recollection of today.

His mind is starting to waver.

(Insert your favorite expletive here – and if you really want to feel it with me, scream it at the light posts from your front porch).

No need to go into details about last night because they no longer matter.  One of the great heartbreaks of ushering your partner into death is that you are helping them leave you.  Your love for each other (hopefully) gets stronger but your partnership weakens, like the body.  Early death is a mandated breakup, one that is best done with pure love and devotion.  It’s a paradox.  What’s worse is that it is not shared equally, as everything else should be in marriage.  The quality of the breakup is on the shoulders of the one being left.  It’s fucked up.

Please feel free to scream at light posts anytime.

Jay and I both think he’s got about 1-2 weeks.  His symptoms are spot-on. His memory loss has been creeping up on him, but tonight’s revelation – saying something uncharacteristically mean to me and having no memory of doing it – that’s new.  My hope is that it’s because we were already having a heated conversation about his ex’s determination to take the kids from me.  I guess that business is just between me and Erin now.  And the courts, but that’s another story.

Suffice it to say, it’s my job to keep him at ease no matter what’s going on in my life.  I’m moving from partner to caregiver.  I can sense the breakup on the horizon.

Ce la vie.   Ce la mort.

Jay’s New Digs in the Land of Nod

Sleep

This picture hangs in our bedroom, an artifact passed down from  Jay’s grandmother – or great-grandmother?  It is a sweet Victorian print that – as artwork – makes little sense amongst our collection of ethnic textiles and modern paintings.  A child safely sleeping in the woods, protected by the vigilant devotion of the family dog…  we keep it on the wall above Jay’s dresser.

Jay has moved into the phase of death in which he sleeps most of the time.  Seventeen hours of sleep doesn’t leave a lot of time for things in this world, but it’s my impression that plenty is getting done in the Land of Nod.

Unlike the dreams I’ve seen Jay have in the years we’ve shared a bed, his hours asleep seem filled with pleasant conversations.  He pantomimes eating (something he’s given up in this world) – even brushes off his beard!  His hands are folded in prayer, pointing and beckoning to folks he’s glad to see, writing with a stylus, typing something on his chest…  he woke up for a split-second this morning with a smile on his face, said “Hey baby,” then went right back to where he had been, the place that smile originated.

About twenty years ago when my grandmother was dying she told my father (her oldest) that is was as if she was going to the Land of Nod.  Raised in Ireland I assumed it was a remnant of her childhood.  Now I think differently.

Jay has been extricating himself from this world for some time.  He has been letting go of the things he can’t take with him, helping us adapt to life without him incrementally.  Supposedly you can’t take anything with you when you go but I’m starting to question the certainty of that…  maybe upon your last breath you leave with just your soul, but I get the feeling that Jay’s been packing and moving pretty actively these days.  We know his heart is big enough to be in two places…   I’m charmed to think his appetite is still with him somewhere he can enjoy it!

In this world he’s giving away his photographs and clothes, and in that world he is settling in – sharing embraces and breaking bread with his new neighbors.  The Land of Nod.  Is it heaven?  Or, as Mormon missionaries would recognize, a kind of Missionary Training Center – a place between places?  Jay has no memory of these seventeen hour dreams when he wakes up, but I can tell he is happy to be there.  Which brings me comfort as I watch his body slip away.

Jay Feb 25 2014

Gestation and the Inevitable

religious_symbols_death

I’m sorry this blog seems so damn heavy.  Honestly, our family life is not terribly different than most others – the ex dismisses the value of the step, kids are vying for attention due to their developmental stages and their life circumstances, parents routinely set aside their personal time to discuss how best to address the needs of the kids…  laundry, dishes, pets, homework, respect, manners, kindness, showers, tooth brushing, bed time reading (yes we continue to read to the kids), etc. …  and the whole business of one of us dying.  That’s not so common, but still not uncommon.  It’s life as a family.

I find it easy to reflect on the importance of serving the kids - without a doubt the most difficult and transformative time of their lives!  We are determined to get it right and maximize everything positive that’s possible (as best we can).  I even find it easy to report on the incredible power Jay and I have found in facing his death together – death, the pinnacle of anyone’s life, here for me to help usher Jay into as the magnificent release we all deserve.  Wow!  My true honor to be a part of.  God put me here for a reason.

But here’s the funny part – just like pregnancy, if it’s natural, death isn’t sudden.  It develops - the body (and the partners) change over the course of this natural phase.  We are not the same people we were when this whole thing started to happen.  We may have been distracted with all the hoo-haa surrounding these changes, but at the end we are not the people we were when we started.  We have lost and gained and lost and gained along the way.  When I was pregnant it was the transformation of me into a parent, and now it is the transformation into a single mother of three – a widow – an independence this experience has already been preparing me for.  Just like pregnancy, actively walking your partner to the edge of life is a process.  We are deep into gestation.  Soon the world will change.  And yet it won’t.

It was months ago that I started to mourn the loss of my dinner-date partner.  As if to prepare me prematurely, Jay’s interest in food started to wane even before his last chemo option.  First I was crest-fallen, then grateful to engage whatever interest in dining he had at all.  This was Fall of 2013.  I have let go of the Dad at the Dinner Table, though he occasionally joins us with a bowl of cereal…  preparing meals without Jay in mind has already been incorporated into my thought process.  Maybe we’ll call that First Trimester.  I miss the old “free and easy” life where our sushi date night was an every-other-Friday kid-free highlight.  I’ve let go of that now.  Time and circumstances have dictated the new norm.

Second Trimester was a bit more vague – like most pregnancies.  The drama still unfolded but all-in-all it wasn’t all that dramatic.  Jay slept a bit more – and more.  His pain was no longer managed successfully with conventional treatment.  Hospice was a relief, in part because we thought of it as early and wise.  Technically, Jay is still not “actively dying.”  Our kids have a bereavement counselor who already sees them (at the house) and who they love.  We have set it up as best we can…  Yancey, Jay’s sister, seems to be coming down every-other week.  She lends a sense of normalcy for the kids, a supreme housekeeping power to a neglected home, and an anchor to Jay as he makes plans to meet their ancestors soon.

Mormons have a beautiful concept of the pre-existence,  which of course easily lends itself to the continuation of life’s journey into the after life (likely the very same place).  Jay imagines his post-life job as watching the arrival and departure  boards – welcoming people (especially those of us who may not have family waiting at the gate) and sending people off…  Quinn’s children are what comes to mind for him.  He expects having to traverse beautiful hills and lovely beaches – probably on his “heavenly” bike – to get from place to place.  His dream job:  Riding his bike up God’s Own Hills to wish his unborn grandchild Au revoir.  Such a good grand dad…

This week I can see the third trimester is upon us.  I lean against Jay’s shoulder in bed, late at night, and hear his irregular breathing.  His cancer is consuming his lungs.  He uses his oxygen machine more regularly.  He can’t seem to fully wake up if he hasn’t awoken naturally.  Pot cookies might encourage an extra bowl of cereal, but gone are the days of actual eating.  We ordered his hospital bed today – something he never thought he’d do.  It will come on Monday and then we will sleep apart.  I have learned how to hold his hand while beside him in his hospital bed – we have spent many, many nights in hospitals together – but this is the harbinger of new our life as partners…  I promise he will die beside me, hospital bed or not.  But still, the bed comes Monday.  My ability to lean against him and feel his breathing will be forever one step removed.  Just another step towards the inevitable – same path we started way back when – but still a surprise when considering the radical thing that comes next.

I’ve been nesting (when depression lets me out of bed).  I am starting to consider the room that will one day be mine alone…  I’m seeing dark browns, coppers and reds.  Textiles on every wall.  Tibetan thankas and Afghani carpets.  Perhaps the Third trimester is for Jay.  Perhaps a First trimester awaits me soon afterwards…

Tomorrow the kids go see the new Lego movie with Yancey.  I hope to plant part of the Spring garden and prepare our bedroom for Jay’s new bed.  Our Food Rescue folks will collect from the Farmers’ Market and by evening we will have hopefully fed a few more Vallejo families.  There are two candles lit on our mantle – one for a friend with cancer in Oregon, one for the step-son of a friend who has attempted suicide for the 3rd time.  Please, if you have been moved to pray, include these folks in your petitions.  Our gestation is going pretty smoothly.  Our friends maybe not so much.

Thanks for checking in.  I’ll keep ya posted.  -A

The beginning of the end is the beginning

End of the beginning

Jay thought he’d be documenting his last stages, ever the writer.  But his interests have become extremely restricted.  He sleeps so much he is forgetting which morning or afternoon certain things were discussed.  His body has started to restrict blood flow to his limbs.  A few days ago his hands and feet were freezing cold, today he is starting to shake under his own weight.  He has functionally stopped eating.  He is still committed to attending to his children and their immediate needs, but he is less and less able to consider the mundane issues of the future….  he has no future, at least in this realm.  I understand this, but it marks the beginning of my solitary life.  We are separating.

I am ushering my love and all our kids through this incredible time.  Jay said goodbye to his father tonight.  Jay’s ex Erin is scrambling to take Quinn and Mac from our family immediately after Jay dies…  All future posts I plan on expanding upon.

Suffice it to say, I think it will be me who writes the daily journal of these last weeks together.  Stay tunes as the drama unfolds.

-A

Love Notes: Dr. Ari Umutyan

Ari

I have not posted in quite a while.  Jay is in Hospice and I have deferred to his writing, choosing to let his voice be our voice.  I realize it is time for me to have an independent voice, though I still reserve the right to speak for both of us – Jay and I – at least for the weeks I have that luxury.  We are separating and I must strike out on my own in many ways, but first I’d like to  write love notes on both our behalves.  My first love note is to our oncologist Dr. Ari Umutyan.

Ari, you are a lovely man.  I cannot imagine the weight you carry home to who is surely an amazing wife.  How could this have been your calling?  We were a train-wreck of neglect, but you brought us into your care.  We knew more of Jay’s cancer situation after 10 minutes of your review than ever with our previous oncologist…  You accepted us and gave us years of life together.  We raised children during those years.  We considered God in those years.  We are more able to face our future because you helped have this extra time together.  Thank you.  Thank you so much.

I imagine we are basically the same age, you’re probably (slightly) younger.  Your kids are certainly younger – I’ve glanced at their photos printed out on your simple printer, 8.5 x 11, taped to your office furniture in your modest office.  Sweet faces, maybe a boy in a soccer uniform, maybe a young girl…  I have never pried.  I heard the sound of your wife’s cell phone ring during one of our visits and you excused yourself to answer.  Good man.  With the weight of so many lives on your shoulders you are not only serving us but you know that ultimately your priorities are with your family.  Damn straight.

Jay and I are amazed at your compassion and brilliance, able to focus fully on the minute details of so many individual patients, and yet be ever-ready to respond to your family’s needs.  Our prayer for you is to continue in your demanding calling to serve cancer patients but to always keep your family first in your mind.  We know that children deserve the finest parentage, and I believe you understand that too.  You are a fine doctor and evidently a fine parent and husband.  God bless you and all your beloveds – I do not doubt that you are capable of facing any need your family has with grace and fierce devotion.

Lastly, please let me praise your professional brilliance and the amazing team you surrounded us with.  Immediately after meeting you we had the names of Angie and Adelle, Hospice Bad-Asses and Cancer Support Gurus (Love notes coming soon).  You advocated for surgery twice before your tumor board allowed it – I am confident last year is something I owe to you and your Mr. Wizard, Dr. Kanan, exclusively  (yet another Love Note for a future post).  You have always collaborated with us regarding any treatment choice – your scientific expertise always willing to bend towards the intuitive understanding of your patient’s sense of their own body.  Every patient hopes for a physician like you.

As we face the end of Jay’s life, as I consider the future while reflecting on the road that brought us to this place, I have nothing but love and respect for you, Dr. Ari Umutyan.  You are the impresario who conducted the last years of this opera.  We could not have wished for anything finer.  You are a brilliant and deeply compassionate man.  We are so grateful to have been served by you.

Thank you, thank you, thank you,

Adrienne (and Jay)

January 8, 2014

muddy feet mama:

Jay’s reflection on our time away…

Originally posted on deyoung deconstructed:

I am sitting in a beautiful room overlooking the Pacific Ocean.  We are at the Ritz Carlton in Half Moon Bay.  Adrienne is across from  me in a white robe.  We’ve eaten our favorite foods: pate, olives, cheese and cured meat.  Besides going to town for provisions, (I may be staying at the Ritz, but I refuse to pay $6 for a bottle of Pepsi), we have hardly left the room.  Later we’ll go to the beach to watch the sunset.

Thanks to all of you who contributed to our “Hawaii” fund.  I am too sick to make the trip.  The idea of going to the airport was too overwhelming.  So instead, we are here.  Better than Hawaii.  Thank you.

There are so many ideas in my head about what to write about. I have a list.  A lot of them are very sad.  But I am not feeling sad…

View original 388 more words

Room 435

Ritz Carlton HMB

We chose the Ritz Carlton in Half Moon Bay in lieu of the Hawaii trip we had hoped to take.  A fine choice, especially since we’ve barely left the room.  Our friends contributed generously to our Hawaii fund, a last-hurrah for our marriage I suppose…  This was just as romantic and much easier to get to.  Many thanks to the folks who have helped us have this time together, either through funds or watching the dogs – you have given us a great gift.

Jay has taught me to love hotel rooms.  This one is average in size, with more of a view of the golf course than the ocean, but has a deep, wonderful bath and a fire pit on the small veranda outside of our sliding glass door.  Inside this room I am content.  Our drama has paused.  We are here, now.  Cancer is too, but to no great effect – as long as I linger over our minutes and hours like days and months.  This morning we listened to men, like giant babies, have temper tantrums on the course.  What exactly are they cussing about?  Across the service road, within earshot, we inhabit different worlds.  Good.

Having drinks this evening, downstairs in what used to be the “high tea” room, our conversation shifted to the memorial service.  What will cremation cost?  We’ve already asked our friend Tony to say the eulogy…  who could speak other than that?  We should call Hospice tomorrow and get that started…  I feel us segueing rapidly back into real-time and head back to the room.  Time is slow in room 435.  I cry on Jay’s good shoulder, we sit outside under the stars listening to the surf, he takes more pain meds, yet another bubble bath and things slow down again.  Much better.

Jay’s pot cookie is kicking in and he’s ordered room service.  We are in our lovely cocoon, listening to African music on my phone.  Tomorrow we head back to our lives, collecting our kids from school and his sister from the airport, but until then our lives are in slow motion.  I will imprint his touch on my hand.  I will remember how he comforts me now and store it away for another time.  We will shoulder the weight of all of this together – joy, grief, fear, anticipation, loss – until it is just me.  I have never been so heartbroken and never felt so blessed.

This afternoon I read to Jay from Ecclesiastes:  “There is nothing better for a man than he should eat and drink, and that he should make his soul enjoy good in his labour.  This also I saw, that is was from the hand of God.”

Carpe Diem, ya’ll.  This time is a gift.

Joie de Vivre vs. Bucket List

I have always loathed the notion of the bucket list – I’ve written this before.  All these things you’re supposed to do before you die, to feel like you’ve truly lived.  It’s my guess the only people who say “live like there’s no tomorrow” are too shallow to know what that means.  It’s trite.  It’s justification for being wild and self-centered.  By linking these impulses to our mortality they are supposedly elevated to what some think of as “really living,” but in reality linking them to death just creates a kind of consumer urgency.  It co-ops the fear of “there isn’t enough time” and translates it in our minds as “let’s go shopping!” (re: skydiving, traveling, drinking, gambling, etc.).  It confuses panic with joie de vivre.  It’s a lie.

Jay and I have spent nearly 4 years balancing the hopeful with the pragmatic.  This phase we’re in now is different only in that the finish line is closer than it’s ever been before (though not in sight).  We have an amazing group of friends who are helping us with simple things like meals, keeping Food Rescue afloat, gardening and animal care.  We have people who can think for us (even parent for us!) when our minds are too addled by anxiety, or congested with existential meditations.  We have folks who aren’t afraid to walk with us as we move forward towards the finish line.  Instead they visit, share meals, talk about their lives – continue the friendship.  They are nervous but willing to learn about their own mortality simply by staying beside us.  These are people with perspective and who know joie de vivre when they see it.  I’d be surprised if there was a single bucket list between them.

If it were my time I would not grieve that I had never been skydiving or seen the northern lights.  I would sleep-in with my head on Jay’s shoulder, have coffee in bed and work on crossword puzzles with him.  I’d wrap my arms around Stella, kiss the top of her head and inhale her scent.  I’d sit in the garden with my face towards the sun and listen.  I’d savor the love in my life and gather my courage to greet death, hopefully without an ounce of urgency or regret.  I do these things every day.

This is what I’ve learned with Jay, through the love of life we share:  You don’t need a list for what you already have.

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