Public Declarations Mean Holding Myself Accountable

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Later this month, I am beginning intensive work with a group of fellow writers–many, like myself, graduates of Carleton College–who I hope will be instrumental in helping me to transform my and Dee’s blog into a useful guidebook for couples who find themselves thrust into horrendous cancer journeys.  Please wish me good fortune as I embark upon this profoundly new path…

 

Most of you know that I completed a Santa Cruz County Hospice Writing Grief Support Group in February and March of this year, and that I promised to share my pieces with you.  I posted three awhile back, and now here are the rest.

 

Please note that all of these were written in 5/10/15-minute increments, are unedited, and remain extremely rough and raw.  Because of the strict time constraints under which these entries were created, some currently lack the nuance and insight with which they will be imbued through the editing process.

 

Regardless, I’m ok sharing them with you in this laid-bare form because I trust the emotional bonds we’ve nurtured over the past four years.  Also, I deeply appreciate you bearing witness to my unvarnished grief journey and, in so doing, serving as my stalwart support posts

 

Believe me, today I am doing much better emotionally than when these writings were birthed, and that is a testament to the strength of your love and friendship.  These pieces and the process that created them have served their purpose, and now it’s time to continue moving forward.  Thank you for resolutely standing by my side!

 

The following exercise was a series of responses to this picture…

 

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Our Wedding Day

 

In this photograph, I can see that we are madly, passionately, and forever in love.  Fulfilled spiritually and emotionally more deeply than either of us thought possible.  Utterly enthralled, swept up in a tornado of happiness.

 

I remember that when this was taken we were just about to get married at San Francisco City Hall–so excited to be back in our hometown together.

 

Seeing you like this now makes me think about how ridiculously in love with you I was and still am.  How we made each other better on a daily basis, always striving to focus on each other’s best attributes.  We weren’t always successful, but we did try awfully hard.

 

Seeing you like this now makes me feel incredibly proud, damned lucky, and unfathomably fortunate.  You were my brilliant, shining, shooting star–snuffed out much too early but having had a massive positive impact on those whose lives you touched.

 

Here is a list of things that are helping me get through today…

 

  • Sleep
  • Downtime
  • Friends
  • Finishing critical/A-1 priority tasks, but then allowing myself time and permission to put less-pressing items on hold
  • Buddy and Kato
  • Exercising
  • Eating more healthfully
  • Dreaming
  • Planning for the future
  • Focusing on and taking joy in completing relatively mundane tasks
  • Movies
  • Music
  • Wine
  • Conversation
  • Laughter

 

In this exercise, I composed my own version of the following poem…

 

THE MAGIC BOX, by Kit Wright

 

I will put in the box

 

the swish of a silk sari on a summer night,

fire from the nostrils of a Chinese dragon,

the tip of a tongue touching a tooth.

 

I will put in the box

 

a snowman with a rumbling belly,

a sip of the bluest water from Lake Lucerne,

a leaping spark from an electric fish.

 

I will put into the box

 

three violet wishes spoken in Gujarati,

the last joke of an ancient uncle,

and the first smile of a baby.

 

I will put into the box

 

a fifth season and a black sun,

a cowboy on a broomstick,

and a witch on a white horse.

 

My box is fashioned from ice and gold and steel,

with stars on the lid and secrets in the corners.

Its hinges are the toe joints of dinosaurs.

 

I shall surf in my box

on the great high-rolling breakers of the wild Atlantic,

then wash ashore on a yellow beach

the colour of the sun.

 

Here is my version…

 

I will put in the box

 

those things that remind me of the savage body blows our marriage had to endure,

and those things that foretold your death between July 1 and November 20, 2017.

 

I will put in the box

 

my image of you as a limping bird with a broken wing,

and my image of myself as your devoted caregiver instead of your beloved husband.

 

I will put in the box

 

your baldness and my impatience,

your physical weakness and my overwhelming fear,

your final gurgling breath,

and my fury at having been left alone.

 

Finally, I will put in the box

 

our self-pity,

and the tragedy of our love ripped from our hearts.

 

My box is iron, mahogany, and concrete–

once sealed, never to be opened again.

 

I shall live outside of my box,

remembering the best of us always.

 

This piece is about the loss of my True North…

 

Dee dying has led to the loss of my True North.  From the night we met to the night she died, Dee was the primary consideration in every single decision I made.  How would she view it?  Would my action help or hinder her, whether consciously or unconsciously?  Would this make her happy or sad, grateful or pissed, overjoyed or deflated?  This isn’t to say that I always did what Dee wanted or what she believed to be in her best interest.  Sometimes I was selfish, but I always considered the impact of my behavior before acting.  Dee was my constant sounding board, and I hers.  We played off each other like partners entwined in an eternal tango.  I tried to see myself through her eyes, and she strived to see herself through mine.  The pictures were always better that way.  How do I chart my course now?  How do I not remain lost?

 

To Dee: I remember…

 

  • Your smile
  • Your laugh
  • Your eyes
  • Your cheeks
  • Your final breath
  • The weight of your body leaning against me
  • Our last kiss
  • My goodbye kiss to you
  • Our passion
  • Our travels
  • Our struggles to regain our marriage after your first bout with cancer
  • How unfathomably incredible our relationship was prior to cancer and how it was altered for the worse by that damned disease
  • Our time spent rapturously in each other’s company, when kissing, touching, and talking would keep us enthralled for hours
  • You on our wedding day–absolute perfection
  • Being brightened by your very existence
  • Our love–deep and abiding…

 

This is my unsent letter to Dee…

 

My Dearest Dee,

 

The most difficult thing to admit to myself is that I lost the woman I married when you were first diagnosed with cancer on 8-6-14.  You changed dramatically in every way imaginable–physically, emotionally, intellectually, and in terms of your self-confidence and zest for life.  I, in sympathy and empathy, underwent massive changes as well.  I became enmeshed in your illness, focusing so intensely on your survival that I neglected myself and our marriage.  I never stopped loving you, but there definitely were times I could no longer see being in love with you (I know you often felt the same).  You sensed this, and we did work our way through to a much better place eventually, finding ourselves in love again just in time for the cancer recurrence that killed you.  How cruel that was!  Still, it was a blessing that we were together again–in an extremely deep, intertwined tangle of love–when you departed this earth.  I do have gratitude for that…

 

Love,

Your Kev

 

I imagine this to be Dee’s response to my unsent letter above…

 

My Dearest Kev,

 

No kidding, Captain Obvious.  I knew this all along, and it really hurt.  However, if I’m being honest, I didn’t mind you throwing yourself wholeheartedly into my care when I was first diagnosed and undergoing treatment because I was terrified, paralyzed, lost, and completely overwhelmed.  I needed you to take charge and guide decisions because I was unable to do so for quite awhile.

 

However, I figured once I got my feet underneath me again and went into remission you would snap back to being my lover, my husband, and my best friend, relinquishing the role of full-time caregiver and once again craving me as your desirable wife.  I had no idea that would be so incredibly difficult for you.  I never stopped loving you either, but I did stop liking you for quite some time.

 

I know I changed.  I never completely got back to who I was pre-cancer, nor did our marriage.  But I honestly can say I would not have preferred to go through this storm with anyone else.  I love you.

 

Love,

Your Dee

 

An acrostic (I remember __________ about Dee)…

 

Death

Exuberance

Intelligence and Italy

Decision-making

Revelry

Excitement

 

Laughter

Our love

Relinquishing control

Empathy

Niceness

Zippiness

Our passion

 

What is my body color today?

 

Very light orange springs to mind, representative of low energy and a burgeoning sunrise.  Possessing shadows while in the midst of birthing a dim canopy of light.  Juxtaposition personified: coming and going, hidden and present, helpful and needy, secretive and obvious, flirtatious and shy, outgoing and reserved, ok but not yet well.

 

This next piece is a response to the following poem…

 

THE DEAD, by Billy Collins

 

The dead are always looking down on us, they say,

while we are putting on our shoes or making a sandwich,

they are looking down through the glass-bottom boats of Heaven

as they row themselves slowly through eternity.

 

They watch the tops of our heads moving below on earth,

and when we lie down in a field or on a couch,

drugged perhaps by the hum of a warm afternoon,

they think we are looking back at them,

 

which makes them lift their oars and fall silent

and wait, like parents, for us to close our eyes.

 

Here is my response, written from Dee’s perspective…

 

My Dearest Kev,

 

I see you struggling mightily to navigate each day with some semblance of normalcy.  I share your rage at us having been cheated out of another 40-50 years together, but I take solace in your Herculean efforts to focus instead on the 14.5 glorious years we did have together.  Thank you for your eternal optimism; I always will love you for that.  I am so sorry this happened to me, to you, to us.  I know there was nothing else I could have done, but I’m still sorry.  You don’t deserve to be a widower at 48, and I shouldn’t be dead at 49.  I know how much you loved me, and I hope you realize how much I adored you–how absolutely, ridiculously enthralled and in love with you I was (even when I didn’t like you very much…).  I know this is unfair, and I know our marriage underwent tremendous strain.  But we finished strong and will remain together forever in spirit.

 

Love,

Your Dee

 

This last piece is meant to express what I still love about life…

 

The thing I still love most about life is free will.  I am grateful that I can continue to choose my fate, to create my future, to indulge the present (for better and for worse), and to discover and strive toward distant horizons.

 

What I most want people to understand about this whole horrific process leading to a new normal is that it is unequivocally a choice.  It is a conscious and deliberate decision to live rather than die, whether dying is immediate or involves withering away on life’s vine, suffering from isolation and neglect.  It takes tremendous strength and courage to choose life when your future is guaranteed NOT to include at least one of your most beloved family members.

 

Those of us who have chosen to build a future should be honored for our bravery and optimism, because both are going to be required in copious amounts from this point forward.

 

As stated at the beginning of this post, please remember that all of these pieces were written in 5/10/15-minute increments during February and March of this year, are unedited, and remain extremely rough and raw.  Also, because of the strict time constraints under which these were created, some currently lack the nuance and insight with which they will be imbued through the editing process.  Thus, please be gentle and understanding with your comments…  🙂  Rest assured, I am doing much better emotionally these days, and that is a direct testament to you, your friendship, and–most importantly–your love.  Again, thank you!

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Friendship Heals–a Bracelet Is Removed, a Wedding Ring Is Put Safely Away, and a Final Present Is Opened…

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Today was big.  I removed two items and welcomed another.

 

Below is the first item I removed.  It’s a thread bracelet that Dee’s dear friend, Ruby, gave to everyone who was present to ease Dee’s transition.  Ruby, your reservoir of love, depth of care, and abundance of thoughtfulness were, are, and always will be deeply and sincerely appreciated.  Thank you!

 

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Ruby’s Love

 

Below is the second item I removed.  It’s my wedding ring.  I designed it, and Dee knew of a jeweler who was able to bring my vision to life, which, in and of itself, is a testament to the partnership we practiced.  Our reliance on each other is further symbolized by the material and structural engineering of the ring, in which platinum was melded with meteorite, causing two distinct substances to enhance each other’s beauty and strength.

 

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My Wedding Ring

 

Below is the item I welcomed.  It’s Dee’s final gift to me.  She and my dear friend, Amy, worked their tails off to design and execute this “thank you” to me for serving as the Chair of my 25th Reunion, which took place in June of 2017 at Carleton College.  The photo, a lovely winter scene with the school’s chapel in the background, is one of my favorites of campus.  The rear of the picture was signed by approximately half of the Class of ’92’ers in attendance. Pretty damned cool!  Why did I wait so long to open it?  By the time it was shipped out here to California from Minnesota, Dee had been diagnosed with her cancer recurrence.  Obviously, I had more pressing issues on my mind.

 

 

So, what gave me the fortitude to see these three tasks through to fruition today?  Friendship, community, and people giving a damn about me, my well-being, and my future.  The details of that story follow.  Please, enjoy!

 

As many of you know, last Sunday, July 1, was my birthday, and if you’ve been following this blog you also know that Dee’s metastatic-breast-cancer recurrence was diagnosed on my birthday last year, July 1, 2017.  That devastation left me with a critical choice: do I forego celebrating the date of my birth for the rest of my life, or do I reclaim July 1 from the gnashing jaws of grief?  I have chosen the latter.

 

Last Friday, Jim, Jon, and I headed up to San Francisco, playing a round of golf on the way. Fortunately, I didn’t embarrass myself too much.  Upon arriving in The City, we checked into our hotel, got ready for the evening, and headed out to meet Joel and Luke at Bix, one of my favorite jazz supper clubs.  Eating a good number of the items on the menu and enjoying tastes from many of the bottles stocked behind the bar left us feeling sated, convivial, and ready for some blues…

 

On to The Saloon, which is San Francisco’s oldest bar, the definition of a dive, and yet a jewel at which artists such as John Lee Hooker, B.B. King, Tommy Castro, and Quicksilver Messenger Service have recorded live albums.  There, the term “mixed drinks” is a misnomer, as mixers are, at best, a whisper of an afterthought.  The music inspired me, and I danced dances that unlocked gateways to paths forward.

 

The Fillmore Jazz Festival followed on Saturday.  Jim, Jon, and I joined more than 250,000 other revelers drinking in the sights, sounds, tastes, smells, and rhythms of artists of all kinds–from big-name talent to young kids trying to get noticed for the first time.  More cultures than you could count and every economic stratum imaginable were mingling peacefully while gettin’ down to the artistry wafting over 17 closed blocks of Fillmore Street, known back in the day as the “Harlem of the West Coast” because of its jumpin’ jazz and blues scene.

 

Rod flew in from San Diego that evening, and all four of us dined at Scala’s, which is where Dee and I had our first date.  My memories of that night were surprisingly warm and comforting, lacking the acute pain they have held for the past seven-and-a-half months.  We enjoyed a scrumptious dinner, delicious cocktails and wine, a few nice clubs in The Marina and Union Square afterwards, and called it a relatively early night, as Jim, Jon, and Rod had to leave Sunday morning.

 

This brings us to my actual birthday, July 1, 2018.  That morning, I ordered breakfast in from room service, which is something Dee and I enjoyed splurging on occasionally.  Then, for some reason, I turned to HBO.  The movie, Away We Go, was running.  Filled with love, tenderness, awkward forthrightness, laughter, heartache, and wince-inducing embarrassment, that film encapsulates the broad strokes of my and Dee’s relationship.  It also primed the pump for what was about to happen next.

 

Good Will Hunting…  For those of you who have forgotten or never seen the movie, Robin Williams plays Sean, a therapist treating Matt Damon’s character, Will.  Sean has lost his wife to cancer, and he’s trying to convey to Will the difference between reading about life and truly living it.  When Sean arrives at the topic of relationships, he says, “And if I asked you about love I’d get a sonnet, but you’ve never looked at a woman and been truly vulnerable.  Known that someone could kill you with a look.  That someone could rescue you from grief.  That God had put an angel on Earth just for you.  And you wouldn’t know how it felt to be her angel.  To have the love be there for her forever.  Through anything, through cancer.  You wouldn’t know about sleeping sitting up in a hospital room for two months holding her hand and not leaving because the doctors could see in your eyes that the term ‘visiting hours’ didn’t apply to you.  And you wouldn’t know about real loss, because that only occurs when you lose something you love more than yourself, and you’ve never dared to love anything that much.”

 

At that point–in the cocoon of my hotel room, enveloped by the love of over 150 friends who helped me to reclaim my birthday by celebrating with me in person; calling, texting, emailing, or Facebooking their warm wishes; sending cards; or dropping off celebratory banners and balloons–I ugly lost it for about 20 minutes.  What a miraculous release!  Through my sobs, I was able, finally, to come to terms with the following by speaking directly to Dee…

  • I’m sorry I wasn’t able to better protect you from cancer.  I feel like I failed you, even though I know it wasn’t my fault.
  • I wish I could’ve taken your place; I gladly would’ve given my life for yours.
  • I’m awed by the strength you summoned when dealing with horrible pain, and I’m so fucking angry and sorry that you had to do so in the first place.
  • I’m floored by the conviction you modeled when you demanded to die with dignity, on your terms, in our home, and in my arms (after, of course, one final girls’ trip to Refuge, because that’s the kind of awesome shit Dee Lorenzo always pulled off!!!).
  • I promise to keep my commitment to you to live my remaining life to the fullest, doing the greatest amount of good with the gifts I have.

 

The bottom line, folks, is that I never could have made it through this without you, and, even though my journey is not yet over, it has turned a corner and found a new trajectory.  Who knows where this particular path will lead?  It does feel more optimistic, though, and, if I focus, I can feel an ever-so-gentle wind at my back.  Thank you, dear friends, for everything.

Obituary Honoring Dee–by Kev

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NOTE #1: Yes, this is my best, most honest attempt to encapsulate and celebrate the life I was blessed to share with my beloved wife, Deidre Anne Lorenzo, who died at 2:52 AM the morning of November 20, 2017, sandwiched between me and her daughter, Jay, while surrounded and supported by a small group of dear friends.  However, this is not the definitive story of Dee’s life because her orbit was so vast, her warmth touched so many, and her spirit welcomed hundreds–if not thousands–into her fold.  Thus, I need you to provide your remembrances of Dee as well.  Please do so either by replying here on WordPress or by commenting on the Facebook thread that led you here.  Thank you for your love, support, and active participation in helping to keep Dee’s sparkle alive!  🙂

 

D&K sunflower

True, Deep, & Abiding Love Personified…

 

As odd as what’s about to follow sounds, please bear with me.  There is a passage in Mario Puzo’s The Godfather that exquisitely captures what happened to me the night Dee and her friends walked into Moe’s Bar off Jack London Square in Oakland on a school night following a Ronny Jordan concert at Yoshi’s.  The scene entails Michael Corleone first laying his eyes on Apollonia Vitelli, the Italian woman who eventually becomes his first wife.

 

As for Michael Corleone, he found himself standing, his heart pounding in his chest; he felt a little dizzy. The blood was surging through his body, through all its extremities and pounding against the tips of his fingers, the tips of his toes. All the perfumes of the island came rushing in on the wind, orange, lemon blossoms, grapes, flowers. It seemed as if his body had sprung away from him out of himself. And then he heard the two shepherds laughing. “You got hit by the thunderbolt, eh?” Fabrizzio said, clapping him on the shoulder. Even Calo became friendly, patting him on the arm and saying, “Easy, man, easy,” but with affection. As if Michael had been hit by a car. Fabrizzio handed him a wine bottle and Michael took a long slug. It cleared his head. “What the hell are you damn sheep lovers talking about?” he said. Both men laughed. Calo, his honest face filled with the utmost seriousness, said, “You can’t hide the thunderbolt. When it hits you, everybody can see it. Christ, man, don’t be ashamed of it, some men pray for the thunderbolt. You’re a lucky fellow.” Michael wasn’t too pleased about his emotions being so easily read. But this was the first time in his life such a thing had happened to him. It was nothing like his adolescent crushes, it was nothing like the love he’d had for Kay, a love based as much on her sweetness, her intelligence and the polarity of the fair and dark. This was an overwhelming desire for possession, this was an inerasible printing of the girl’s face on his brain and he knew she would haunt his memory every day of his life if he did not possess her. His life had become simplified, focused on one point, everything else was unworthy of even a moment’s attention.

 

Of course, for me this “thunderbolt” moment was, to put it politely, romantic.  However, I have a strong suspicion that Dee had a somewhat similar effect on just about everybody with whom she came into contact.  Meeting Deidre Lorenzo meant liking her immediately, and liking her almost always led to loving and admiring her.

 

 

 

Dee was humble and unpretentious, downplaying the fact that her strength of will, gifted intellect, and reservoir of resolve enabled her to overcome a severely painful adolescence and–as a young, divorced mother–work full-time, finish college (B.A. with Honors in Art History from UCSC), and raise Jay, her stellar daughter.  This last piece is so integral to who Dee was that it cannot be overstated.  Dee loved Jay fiercely, earning her the nickname, “Mama Bear.”  To wit, a couple of years into our mad, passionate, ridiculously awesome love affair, Dee cautioned me, “If it ever comes down to a choice between you and Jay, you better be ready to pack your bags because I’ll always choose her.”  I don’t remember having done something to merit such a warning, and obviously Dee never had to make that choice, but I unequivocally understood the strength and seriousness of Dee’s love for and commitment to Jay.

 

J and D w Sims May 2011IMG_6545IMG_5355-3IMG_4909

 

Professionally, Dee grew to become one of the most well known and sought-after doulas in the entire Santa Cruz and South Bay regions, eventually helping more than 500 babies enter this world.  She also was an integral part of birthing the new paradigm of team doula work in order to decrease stress and burnout among these wonderful professionals.

 

Dee Violetta PHO

 

A very rare fourth-generation-native San Franciscan, like myself, Dee was the loving and treasured daughter of Don and Gerri Lorenzo, a couple who, day in and day out, modeled what true love and till-death-do-you-part commitment look like.

 

 

 

As anyone who has ever met Dee will attest, her smile and laugh were radiant and infectious.  She was a “hub” person, around whom others revolved.  Dee pulled folks into her orbit with openness, generosity, and the most welcoming spirit imaginable.  There was always a seat for everyone at Dee’s table, and, whenever necessary, extenders would be added graciously and without a fuss.  Dee’s loyalty to her friends was absolute–so much so that, even in the grip of debilitating chemo, she often worried she had slighted someone with a forgotten thank you or careless offhand remark.  Rarely was that the case, but Dee cared so damned much that, even while sick, she would bend over backwards to make sure others felt appreciated.  That’s who she was.

 

 

B-Maids

 

Of course, Dee wasn’t perfect–nobody is.  She had a temper, could be willful, enjoyed inordinate amounts of clutter, and had an almost congenital inability to admit when she was wrong.  Despite all this, Dee was the ideal fit for me.  Her humor, lightness, sparkle, genius, and spontaneity elevated me as a human being.  Her empathy for others matched mine, and together we strove to make the world a saner, more humane place.  Dee’s strength awed me.  It was humbling to watch her struggle through her treatments yet remain upbeat with friends and optimistic about her chances.  When confronted with the inevitable, my Love was able to face her fate with dignity and serenity.  Unfathomably, Dee was able to provide me with the space NOT to accept the fact that she was dying until I finally was ready to do so.  How gracious and generous of her!  To this day, Dee’s overwhelming faith in me pushes me to become the best version of myself, and her deep and abiding love for me–expressed with some of her final breaths–gives me the confidence that someday I will once again be able to be a great partner.  That’s a long way off, though…

 

I had feared writing this obituary because I thought it would bring a finality to Dee’s passing that would begin forcing my memories of her and our life together from my mind.  In reality, the opposite has been true.  Composing this chronicle of love and admiration has empowered me to remember, reclaim, and proclaim from the mountaintops just how damned lucky Dee and I were to find each other.  Thunderbolts are rare, but, on the night we met, two rained down on Moe’s Bar in Oakland.  I thank the universe–and all the magic and wisdom in it–for the 14.5 years Dee and I had together.  Of course I wish there were many more, but I’m not going to let that negate the fact that Dee and I had a truly epic love affair–rare and hot and extinguished much too soon, but absolutely fabulous nonetheless!

 

 

 

I recently had a conversation with a friend who is considering getting into a serious relationship with someone who, at best, has 10-15 years to live.  Since Dee and I had 14.5 years together, my friend thought I’d be a good person to pose the following question to: “Kev, knowing what you know now–all the love, all the pain, all the joy, and all the heartache–would you still do it over again if given the chance?”  My answer: “Unequivocally, yes!  Dee and I brought more happiness into each other’s lives in 14.5 years than a lot of folks who are married for 30, 40, or even 50 years.  Sure, the pain of losing her has been almost unbearable, but the pleasure preceding it was way more than worth it!”

 

I still love you more than you can imagine, Sweetheart.  May God bless you always…

 

 

 

NOTE #2: If you are inclined to make a donation in memory of Dee, please click here and look over the details.  Thank you very much for considering sharing your generosity!  🙂

A Painfully Beautiful Memory & Heartbreaking Birthdays

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The other day, I drove past a hotel in which I likely will never stay again.  The Palace in San Francisco is where Dee and I spent our engagement weekend, one of the most magical of our time together.

 

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Des and T

 

It started late on a Saturday afternoon at the San Francisco Opera House.  Dee and I met our dear friends, Desmond (Des) and Teresa (T), for Nutcracker, and Dee and T couldn’t fathom why I refused to coatcheck my blazer even though it was nice and toasty in the auditorium.  Des understood, because he knew Dee’s engagement ring, which he had helped to pick out, was sitting snugly inside my breast pocket.  After the performance, we headed over to the W for cocktails.  Two drinks in, I asked everybody to hold hands and made brief remarks (well, brief for me, anyway) about the value of love, friendship, and chosen family in people’s lives.  Then, I released Des’ hand, knelt down, pulled the ring from my pocket, and asked Dee to marry me.  She cried; exclaimed, “Yes, of course I will!”; and grabbed, kissed, and held me tight before I was able to put the ring on her finger.  I’ll never forget T shrieking, through tears of joy and surprise, “Dee, LOOK AT YOUR RING!!!”  Following a beautiful bottle of Taittinger and to-die-for dinner at La Folie, courtesy of Des and T, Dee and I retired back to The Palace, where more good fortune struck…

 

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In Love Forever…

 

As we approached the hotel, we noticed it was quite dark.  A major electricity substation had blown, leaving The Palace to rely on emergency backup power.  At the time, we thought nothing of it and figured we would still be good to depart home to Santa Cruz on Sunday.  The following morning we were informed that the electricity issue would not be fixed until Monday and that our car was stuck in the garage underneath the hotel because the auto lifts couldn’t operate on emergency power.  So, we were gifted an additional night, got to enjoy more of San Francisco throughout the day, and sipped champagne by candlelight in the Pied Piper bar later that evening.  Beyond magical…

 

 

The thing, though, is that the unadulterated joy Dee and I experienced over the course of that weekend–and throughout our subsequent years together–only serves to magnify the pain of losing her.  As I’ve said before, the intensity of our passion and solidity of our relationship are directly correlated to my current heartache.  Who would have ever thought that two sides of the same coin could be so far apart?

 

So, why are these emotions so acute right now?  Two reasons…

 

The first is that Monday, June 11, would have been Dee’s 50th birthday.  She didn’t even make it to half a century…  Absolutely tragic!  In order to honor Dee on June 11, I will be publishing my version of her obituary here on this blog.  Let me be clear: even though my Monday post is going to be MY definitive obituary of my beloved wife, it is not going to be THE definitive obituary of Dee.  My Love was so intimately connected to so many people–so intertwined with their lives, their hopes, their fears, and their dreams–that it would be presumptuous of me to assume I alone could capture all that was and is Dee.  Therefore, on Monday, June 11, or anytime after, please comment on MY obituary of Dee by writing YOUR OWN obituary of/thoughts about my beloved.  You can make your comments either directly here on the blog or on Facebook–whichever is easier for you.  Because Dee was always bringing people together, I think this is a great way to honor her incredible community-building spirit that lives on within all of us.  Thank you in advance for participating in this endeavor.

 

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Under Miro in Zurich

 

The second reason my emotions are running so high right now is that my birthday is coming up on July 1, and that was the day last year when Dee was diagnosed with her cancer recurrence.  In other words, my birthday 2017 was the exact moment I learned the love of my life was going to die.  Nice, huh???  I have already decided to open Dee’s final gift to me on July 1 of this year.  Most of you know I was the Chair for my 25th college reunion last June, and that our class set all kinds of records.  Dee, my dear friend, Amy, and lots of other folks spent copious hours putting together a fabulous gift that was presented to me at reunion but that I didn’t have enough time to appreciate (being on duty and all…).  After reunion, the gift, which is quite large, was shipped out here to Santa Cruz from Minnesota, but it arrived after Dee had been re-diagnosed and was already in crisis.  As a result, the box has sat unopened right inside my front door for almost a year.  I’m sure I will be both incredibly sad and unfathomably grateful when I tear it open.  Mysteries await…

 

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A Happier Birthday of Mine

Back To Blogging After Necessary Break

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Begonia Fest 2007

 

Dear Friends:

 

I owe you an explanation for my absence and a roadmap for moving forward.  First, the explanation…

 

Dee and I started this blog in the late summer/early fall of 2014 as a guide to help other couples who find themselves battling cancer in general and Triple Negative Breast Cancer in particular.  From the beginning, we wanted our entries to come from the perspectives of both patient and caregiver because, while inextricably intertwined, the experience of each is decidedly unique.

 

As you know, Dee died on November 20, 2017, and for the first four months following her death I felt as though I was dealing fairly well and moving forward into my new normal at a healthy and reasonable pace.  Because nobody told me the following, I am sharing it with you now: Approximately four to six months after the loss of an intensely loved one, the numbness from the shock of their passing will wear off, and you will feel as though you’ve been blindsided by a semi-truck.  Emotions will overwhelm you like surf in the midst of a tsunami; your patience for small-talk and minutiae will walk a razor’s edge every waking hour; it will be all you can do to hold yourself together professionally; and your previously exquisite social graces, common sense, and emotional intelligence will struggle mightily to regain their footing.  This was my experience from the latter part of March until the third or fourth week of April 2018, and that period of time felt more true and real to me than any other in my entire life.  With more fervor and gratitude than I have ever been able to muster, I thank my dear friends for not abandoning me, my Hospice Grief Support Group for lending a nonjudgmental ear and comforting shoulder, my private counselor for continuing to nudge me gently and gracefully along my healing path, and my Grief Writing Group for empowering me to express the things I most feared saying aloud.  While I certainly am not back to 100% pre-Dee’s death (that obviously will take a very long time), the past two weeks have found me on the upswing again, moving steadily toward my new normal and making peace with the tragedy that has occurred.  Now, the roadmap…

 

While in the depths of my worst weeks (the latter part of March until the third or fourth week of April 2018), I was participating in the aforementioned Grief Writing Group, which was phenomenal.  Although the pieces I produced are emotional, raw, and extremely intense, I firmly believe they can be illuminating and helpful to others who are hurting.  Thus, I am going to share them with you a bit at a time (all at once would be too much, I fear).  Be forewarned, this writing is not for the faint of heart, but I do sincerely hope that you find the time and courage to read it.  Feedback–either positive or constructively critical–is always deeply appreciated.  Here is the first taste, with a little explanation to set the scene…

 

Around March 20, 2018, we were assigned an acrostic, which is a form of writing in which the first letter of each line down the lefthand side of the page spells a name or word.  We were asked to use our first names and then expand our thoughts on one of the words.  Here is mine, followed by two haikus…

 

Kaleidoscopic

 

Eviscerated

 

Vague

 

Introspective

 

Numb

 

“Kaleidoscopic” summons to mind a carnival funhouse overflowing with sound, color, light, mirrors, and sparkle.  This is not my intended meaning.  I use this word tonight as a synonym for shattered.  I mean to evoke the sense of a once-beautiful scene exploded into millions of tiny shards–each carrying a hint of former joy but all as frustratingly transient as a desert mirage.  I long for the day when I might be able to align the segments of my life’s tube in such a way that I’m able to create another gorgeous image, but I know it won’t be the same, and that makes me both sad and scared.

 

Haiku #1 for Dee…

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Smile lit up rooms,

Laugh could fill a concert hall,

My Love, forever…

 

Haiku #2 for Dee…

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Dying in my arms,

Cracking jokes until the end,

Exiting as love…

Earthquakes, Emotional IED’s, Mistakes, Remorse, and Regret

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In my Hospice Grief Group a couple of weeks ago, the facilitator likened the tragic death of a dear loved one to getting slammed to the ground by an eighteen-wheeler. Unsurprisingly to those who know me, I had a different take on the situation.

 

I am experiencing Dee’s passing as a cataclysmic earthquake followed by unending waves of unnerving aftershocks. Although her actual moment of transition was filled with love and relative peace, Dee’s three-and-a-half-year cancer journey and the gaping emptiness and overwhelming sadness left by her death have been horrific. For the first month or so, I felt like a zombie stumbling through a devastated landscape littered with objects and memories that seemed eerily familiar but to which I no longer had strong, tangible ties. On into the second month following Dee’s passing, I began to extract moments of lucidity from the oppressive fog of grief surrounding me on an almost continual basis. Even then, though, just when I thought I was beginning to get my emotional feet underneath me again, an aftershock would strike and shake me to my core—pouring salt into my open wounds, mocking my attempts at recovery, and sending me into isolation. I now am in month three. The aftershocks are still hitting, but they are qualitatively different in that they no longer incapacitate me. The aftershocks rumble multiple times each day, but now they serve more as reminders than punishments. They nudge me to take care of myself, to reach out to friends and loved ones, to walk on the beach with Buddy and snuggle Kato at home. Most importantly, they force me to remember just how damned much I loved—and love—Dee. Fortuitously, these days when memories come bubbling to the surface during my rockin’-and-rollin’ aftershocks, those honoring my and Dee’s epic love for each other are beginning to outnumber those that make me break down in tears because of how much I miss her. This is progress…

 

Emotional IED’s—as in Improvised Explosive Devices—are one of the main accelerants of my aftershocks. Although brilliant across multiple dimensions, Dee did not excel at neatness and organization. She was one of those “pile people” who had a solid grasp on where she could find whatever she required whenever she needed it, but her system never made sense to me. This was something I accepted about her and never worried about, until…

 

As some of you know from Facebook, I am in the process of beginning to sort and distribute Dee’s belongings. Generally, I didn’t assume this would be much of an issue because I’m not particularly materialistic, nor do I become inordinately attached to physical possessions. I’ve already put aside the few pieces of Dee’s that are critically important to me, and I’m extremely careful to check-in with our daughter, Jay, about which treasures she wants to keep. Sadly, though, day in and day out, I get blown up by an Emotional IED. For you see, Dee “filed” journals, love letters, and other deeply intimate items in her shoe rack; underwear drawer; cookbooks; office-supply box; and, I’m sure, other places I haven’t discovered yet. The toughest thing about these Emotional IED booby traps is that they’re flip sides of the same coin; they’re neither all bad nor all good. Of course they cause heartache and tears because they remind me of how much I—and all of you, of course—have lost; yet, they also serve as astoundingly precious reminders of the deep, abiding love Dee shared with all of us. This is a double-edged sword that wounds but doesn’t kill, its cuts reminiscent of what was and what is now missing…

 

As a tenet of life, I don’t put much stock in remorse or regret. However, an interaction with a dear friend several weeks ago made me rethink my attitude about this a bit. My friend’s parent is battling cancer, and he was feeling bad about a misstep he had made with another family member. I told him, with great clarity and alacrity, there is no possible way you can make it through a battle with cancer without screwing up time and time and time again. The war is too damned fierce and the pressure too frickin’ great. Mistakes will be made—repeatedly. The best one can do is recognize errors, apologize for them, and try to improve as the cancer journey progresses. This realization caused me to consider my biggest mistakes while caring for Dee. First, I’m not sure I fully understood or acknowledged her terror because my fear of losing her was so great. Sweetheart, I’m sorry. Second, right up until a week before her death, I was completely incapable of hearing that Dee was “done” with treatment. Thank God for her friends, to whom she was able to admit she was ready to transition. Sweetheart, I’m sorry. Third, even when Dee entered remission after her first go-round with cancer, I wasn’t able to let go of the role of caregiver as quickly as I should have so that I could re-engage fully in the role of husband. Sweetheart, I’m sorry. Fourth, I forever will wish that we had done more together, Dee—that I had been more of a “yes” man to you than a vigilant guardian. Sweetheart, I’m sorry.

 

The bottom line, My Love, is that we both did our best and neither of us was perfect. We fought a hell of a good fight and still lost. Yet, we had each other for fourteen-and-a-half glorious years. Thank you for shining your light upon me. You made me a better man, and I hope to carry that torch forward in your honor for decades to come. I will love you forever, my sweet wife.

A Letter of Love, Sadness, Commitment, and Hope to Our Dee

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Since it is the point of transition from one year to the next, and because Christmas, New Year’s, and my and Dee’s engagement and wedding anniversaries have served as stark, raw, and painful reminders that My Love died six weeks ago, I feel it appropriate to pen this letter as a salve for all of us who are grieving.

Sunday, December 31, 2017

 

My Dearest Dee,

 

Although you tired long ago of hearing me tell over and over (and over and over and over) again the story of our meeting, that tale bears repeating at least once more because it celebrates true, serendipitous love.

 

In June of 2003, as a single Mother on a school night, you wrangled childcare for Jay and joined your dear friends an hour-and-a-half away in Oakland for a Ronny Jordan concert at Yoshi’s Jazz Club.

 

Given that I had had a rough day at work, I was nursing my second Black Label and soda at Moe’s, a joint just down the street from Yoshi’s, when, following Mr. Jordan’s show, you and your friends found your way to the bar. As the door opened, I turned in my chair, noticed three beautiful women walking in with two men, met your eyes across the room, smiled, was happy that you smiled in return, and hoped that you were the unattached woman in that group.

 

After too much long-distance flirting, your observant friend, Rob, introduced me to you; the rest, as they say, is history. We talked for hours and played some pool. You told me all about Jay, and I said that you would have made one hell of a Carleton woman (those who know me and the way I feel about my collegiate alma mater are fully aware of what a compliment that was). At Rob’s wife, Heather’s, urging, we all ended up back at my place, swimming and hot-tubbing until 4:30 in the morning. I’ll never forget that you pulled out of your purse a Tupperware container filled with fresh strawberries that you graciously offered to us as a snack at 2:45 AM.

 

We shared just one kiss that night, and you did a leave-behind of your jacket. Savvy!

 

As I rolled into work four hours after we had parted, a colleague approached me and said, “Kev, I’m not sure if you realize this, but you kind of smell like a brewery.” My response was, “I don’t care. Last night, I met the woman I’m going to marry.” You and I were engaged four months and three weeks later.

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Our marriage was rich with joy and sadness; that’s what made it so damned real and so incredibly solid. No matter what befell us (and a great deal did), you and I strove to live by the mantra, “Let’s see ourselves through each other’s eyes.” I think that worked well for you, because I always held you in the highest esteem. As for me, I never felt smarter, funnier, more skilled, more accomplished, more handsome, or more interesting than when in your company. You lifted me up and made me a better man. The absence of that is my first sadness, but it’s not the worst.

 

What grieve me more, what slash and burn my heart to its core are all the things you’re going to miss.

 

We’ll never explore Paris together or cruise Alaska with Mom and Jay. You and I won’t get to build our retreat center, lead coaching workshops for couples journeying through cancer, or sponsor and host art-turismo residencies and salons. Still, even these aren’t the worst.

 

Not becoming a Grandmother is your most devastating loss. For a woman who helped to welcome over 500 babies into this world, I cannot imagine the pain and disappointment you felt when you knew you were dying and realized you would never hold Jay’s children in your arms. Your fierce and unyielding courage in the face of that reality awes me. God, you were—are—incredible!

 

About six weeks before you passed, you did something that, at the time, I thought was caring and kind but that, in retrospect, I realize was singularly generous. You were in your green chair in our living room, and you asked me to come sit in front of you. As I got settled, you grasped my two hands and said, “Kev, I think there’s a good chance this cancer is going to kill me, and, if it does, I need you to promise me that it won’t kill you too. You have so much to offer this world, and I expect you to use your talents to their full potential. Don’t give up.” I perfunctorily said, “OK, Sweetheart, I won’t, but don’t talk like that. The chemo’s working!” At that point, you got angry and grabbed the neck of my shirt, saying sternly, “Kevin, I’m serious! All this will not have been worth it if you curl up into a ball and quit. You can be sad, of course, but you must go on. Please, promise me.” I finally understood the depth of what you were saying and the gravity with which you were expressing it. I responded, “Yes, Sweetie, I promise. I will be devastated if you leave me, but rest assured that all this will not have been in vain. We’re going to keep fighting, of course, but I understand what you’re asking of me and agree to your request.” So, My Darling, here are my commitments to you…

 

I promise to be the best possible Father to Jay for the remainder of my life. She is a great young woman who has all the big things correct. We did a really good job there. My task now is to help her figure out some of life’s smaller stuff. She’s on her way, and I’m confident she’ll arrive at her desired destination in due course on her own terms.

I will turn our blog into a book. I’m not sure how long that’s going to take, and I’m going to have to ask for help from our friends who have actually written and published books, but this is something I want to do in your honor.

 

I commit to using my professional and intellectual talents to be in and of service to others while simultaneously fulfilling 100% of my potential in the areas of teaching, mentoring, coaching, team building, and community activation and empowerment.

 

With all my heart, Sweet Love, I hope you have found happiness, rest, and peace in your new plane of existence. I think of you constantly and hold you dear to me each and every day. I’m making it through this tragedy by putting one foot in front of the other and focusing on the here and now. Unfortunately, the present is pretty damned crappy, offering only occasional glimpses of merriment. Although Mom, Jay, other family members, and dear friends are helping to ease my pain and remind me of the good that remains in this world, I hope that soon I will cease to feel like an observer of and witness to other people’s enjoyment and, instead, become an active participant in life again.

 

I miss you terribly, Sweetheart, but I also am glad that you’re no longer suffering. Please continue to watch over Jay, Mom, me, and all our other loved ones. Happy 2018, Dee!!! It’s got to be better than last year.

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XXXOOOXOXOXO,

Your Kev

Why Continue with the Blog?

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Since Dee’s transition at 2:52 AM PT on November 20, 2017, I’ve had several people question me about how and why I am going to continue posting to our blog.  These queries haven’t been impertinent; folks are just curious.

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The “how” is easy.  I’m simply going to continue writing and, as best as I’m able, interacting with everyone who responds to my ongoing processing and observations.  The “why” is a much more nuanced, deeper, more meaningful, and meatier issue…

Light *Love* Forever

For better and worse, the cancer caregiver’s journey, although intimately connected with that of the cancer patient, is temporally and qualitatively different.

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First, we caregivers are the Rocks of Gibraltar for our ailing loved ones while they are in the midst of treatment.  We become the screens upon which they project their fears, so as to release those anxieties and their poisonous energy from bodies that are struggling to heal.  Our needs as caregivers necessarily get subjugated because, while we are suffering a great deal, we are not in danger of imminent death.  Cancer patients have the time, space, resources, and support to process their emotions throughout their entire illness and post-treatment periods.  Caregivers get to begin processing only after their loved ones either are safely in remission or have transitioned to their next planes of existence.  This isn’t a complaint; it’s just a fact.  That’s why so often–at the end of successful treatment–caregivers and patients find themselves forking off onto two different roads.  The patient is raring to go, completely ready to get on with his/her life, while the caregiver wants to curl up in the fetal position and hide under the bedcovers for six months.  Many of you might remember this happened with Dee and me.  So, put simply and concisely, I am at the beginning of my processing journey, especially given the fact that the Love of My Life has died.  This leads me to point number two…

My journey–now and for the foreseeable future–is qualitatively different than any other on which I have embarked.  Even though I lost my father to suicide when I was 20, Dee’s passing has hit me harder, more deeply, and more acutely.  I now view my life as demarcated by a border constructed the moment Dee died.  Call it pre- and post-Dee, if you like.  That wondrous woman was THE CENTER of my existence from the night we met until the moment she passed.  Everything I did, everything I thought, and everything I dreamed flowed through her in one way or another.  I have lost the flip-side to my coin, and–kind of like Star Wars whenever a Jedi enters or exits the tale–Dee’s death has caused an imbalance in my force.  When my dad left me, I still had my dear mom.  Just as importantly, I was quite young, with the vastness of the majority of my life stretching out before me.  Neither of these factors applies now.  There is not–in fact, CANNOT be–a replacement for Dee, and I most definitely am not a young man.  I’m not ancient, of course, but I am pushing 50.  So, bottom line, I have to figure out a pathway through this thicket of massively intense, grief-stricken emotions so that I can settle into a new normal that enables me to live fully for the rest of my life without being an angry, bitter jerk.  This blog is part of my process to get there.

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I hope all of you will remain travelers with me on this journey.  Thank you, deeply and sincerely, for your love and support.  I appreciate you more than you will ever know.

 

Love,

Kev

Celebrations of Dee–“Just the facts, ma’am…”

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People have been asking, so here’s the 411.

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Although spiritual to a great degree, Dee neither was schooled in nor practiced a formal religion.  Therefore, we are not having traditional memorial and burial services for her.

 

Dee was cremated yesterday, November 28, and her ashes will be collected soon by Jay and me.  Dee’s ashes will be scattered at sea during a very small and private ceremony in the relatively near future.  A handful of Dee’s closest chosen-family members will be personally invited by Jay and me.  Jay and I are still pulling together the details of all this, so please bear with us.

One of Dee’s fellow cancer coaches wrote to me, “Speak her name–tell us stories–she remains alive!”  I LOVE that!!!!!  🙂  In honor of Dee’s insanely strong spirit, we are planning to hold–likely sometime in the first half of 2018–a massive, blingy, blowout party/unbridled celebration of all that my Love was, of all that she represented, and of all the staggeringly positive difference and light she brought into this world.  Everyone who can make it is invited to partake in this kick-ass shindig.  You will be expected to wear the brightest, most colorful, happiest, most effervescent clothing you can find.  You should be ready to eat, drink, dance, sing, laugh, and share story after story after story about our beautiful Dee.  Obviously, specific details on this will be forthcoming, but please pencil it in in the back of your mind.  Dee’s celebratory gathering is likely to be held somewhere in either Santa Cruz or Montery Counties–maybe even Big Sur!!!  🙂

Thank you all for your patient love and care.  Dee wasn’t traditional, to be sure, and so her disposition and life celebration shouldn’t be either.  Peace, love, and gratitude to each and every one of you…Kev

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A Husband’s Lament…

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Early mornings and late nights in bed are the worst because those are the two times each day when, without fail, I would kiss Dee. Those treasured moments are no longer mine to enjoy.

Almost to the minute, Dee has been gone for one week. Surreal? Yes. Tragic? Indeed. Understandable? Not really, but I’m making an effort.

Here are two vignettes from the day and evening of Dee’s transition that I hope will provide levity and engender admiration. First, the humor…

A week ago on Sunday morning, those of us at the house thought Dee might be leaving us right then and there. Furniture was moved out onto the deck, I swept my Sweetie up in my arms, and we began a series of prayers and affirmations that were meant to speed Dee on her way with gratitude, freedom, and utmost respect. About an hour later, it became clear that Sunday morning was not the time for Dee to pass, at which point she opened her eyes, looked into mine, and without missing a beat said, “If I wake up tomorrow morning, I’m going to be fucking pissed!” Everyone laughed for a minute or two, all the while commenting on how such a statement was SO Dee—pitch-perfect, slightly irreverent, yet spot-on in terms of its honesty and vulnerability.

In the wee hours of Monday morning—when it became clear that Dee was indeed ready to transition to her next plane of existence—true to form, she sat up in her hospital bed against the exhortations of all who were present. Sandwiched between me in front and our daughter, Jay, in back, Dee leaned forward but then straightened as her breathing became more labored. I rose up to give her one final kiss, expecting not much in return because of all the medication in her system. To my delight and surprise, though, Dee’s final moment of clarity hit, and, in addition to returning my kiss with tenderness and passion, Dee stated as clearly as a chiming bell, “I love you.” She then turned to her left, trying to get her mouth as close to Jay as possible, and uttered the words, “Love, love, love…” Dee then pitched forward, and I held her with great reverence and strength until I heard her final breath leave her body.

I have long maintained that I married above my pay grade. This statement is neither falsely humble nor a diminution of my character. Rather, it is a testament to how unfreakinbelievably AWESOME Dee was. People adored her upon introduction. Her fierce loyalty to and protection of family and friends earned her the nickname, “Mama Bear.” Yes, her laugh was infectious; yes, her spirit was warm and welcoming; yes, her energy could vacillate between calm and centered and extraordinarily adventurous; but that smile of hers is what really killed. It lit up rooms and wrapped people in an embrace of such pure, kind-hearted goodness that they had no choice but to return the favor.

It would be reasonable for you to think I am unfathomably bitter and angry to have lost such an amazing partner at such an absurdly young age, and you’d be correct in assuming that it’s EXTREMELY easy for me to go there in my unguarded moments. However, I am trying something different that seems to be helping me to cope. Instead of being exceptionally pissed that I don’t have another 40, 30, 20, or even 10 more years with Dee, I am trying to remain grateful that this wondrous woman chose me. Out of all the blokes in the world, she selected me as her partner, and for 14+ unequivocally stellar years, I was bathed in Dee’s joy, vibrancy, light, spontaneity, brightness, optimism, kindness, and flat-out goodness. That’s a pretty big win in my book, and, even though I wanted a hell of a lot more, I will accept, as Tennyson wrote:

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“’Tis better to have loved and lost

Than never to have loved at all.”

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Dee and I had a truly epic love story—one which, from a spiritual perspective, will never completely end, even though Dee is no longer here with me in the flesh. Our commitment to and belief in each other were that strong.

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So, why did this happen? After wracking my brains for months on end, I have settled on the one explanation that makes a modicum of sense. I believe certain individuals on this plane of existence are shooting stars. They burn brighter, hotter, and faster than the rest of us. They illuminate and generously provide energy and sustenance to all those with whom they come into contact. While this is positive on a cosmic, karmic level, it leaves these beautiful beings depleted much earlier than the rest of us. Their bodies can neither contain nor sustain their brilliance. Their corporeal selves wither and die so that their flaming spirits can soar unfettered.

I want to end this post with a note of gratitude. Dee died at 2:52 AM the morning of Monday, November 20th. The evening of Tuesday, November 21st, there was a get-together at our home of a group of women who were very near and dear to Dee. While addressing the gathering about a topic that I can’t even remember now, it suddenly hit me that there were several women present who likely knew weeks or months earlier than I that Dee wanted to transition—that she was done being poked and prodded, that she was finished with the pain, that she was ready to submit to her fate. Of course I, her husband, was constitutionally incapable of hearing such messages because my job was to protect Dee from the cancer trying to kill her. In that moment of realization out on our deck, I felt nothing but overwhelming gratitude toward those women. They were able to lend an ear to Dee, to listen to her and her wishes, and to keep her secret safe and sound until I finally was able to come around, understand, and fully support my Love’s decision to enter hospice care as a prelude to her transition to her next plane of existence. That gratitude led to my line of the night: “You women are STRONG AS FUCK!”

Peace, love, and gratitude always,

Kev

From Dee and Jay – mother daughter post :]

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First off we hope this finds everyone well, smiling, knowing they are loved and appreciated!

Dee here:) This has all been an incredible, heartwrenchingly open experience- like two hands coming in and opening me up, opening my heart to people in ways I didn’t know were possible. It’s been painful and scary at times but it’s also been a beautiful, indescribable gift. I’ve witnessed the power of being open while you’re standing in the fire. I don’t think many people get the level of support that I do and the absolute goodness of people has been just blowing my mind. I’m grateful and in awe.

I wish I had a crystal ball, folks.

Anybody who felt like they couldn’t reach out, or didn’t or weren’t able to- please don’t be afraid, the possibility is always there it’s never too late.

Love,

Dee

Jay here,

I’m having trouble finding words here. This picture pretty much sums up the energy I’m trying to channel with my mom. I’m so thankful I have Dee as a mom. I’ms so thankful I’m so close with my mom’s best friends. Thank you, I’m lucky to have you all.

Best,

Jay

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*******We’ll be posting soon about a celebratory party with Dee!!!***********

From the Mealtrain post, 11/16/17-

On July 1st Dee was diagnosed with a metastatic recurrence of her breast cancer. She was in and out of UCSF and Dominican quite a few times since then and undergoing chemotherapy all the while. Her health for a time seemed to be improving, and then wasn’t. Last week Dee was back in the hospital with more fluid building up around her lung and her heart rate spiking. New scans revealed significant growth of the tumors in her lung and showed that one lobe of her left lung collapsed.

Such difficult news.

Having consulted with all her doctors—those from her Santa Cruz team as well as her oncologist at UCSF, (and ultimately with the support of her husband Kevin and her daughter Jay), she made the difficult, but imminently reasonable decision to stop chemo, go home, and to enter hospice – so that she could enjoy her remaining time on this earth to the best of her ability, no longer being ‘poked and prodded’ (a gentle way of saying what this brave soul has undergone attempting to fight this cancer). Jay has now moved down from San Francisco so that she can be full-time with her mom and help with her care.

Dee is resolved, and is at peace with her decision. Those of us who have spent time with her at all recently know how hard she’s tried, and how much she’s suffering, and respect this decision, despite how hard it is for us to let her go.

Today is all any of us have really, but for Dee, there is the possibility that she will only have weeks or months left on this earth.

Because those who love her want her remaining time to be filled with the laughter, joy, memories, connection, fun and companionship that she has always generated, and loves to have around her, we’re keeping the  Mealtrain going to support friends and family having time to visit, and share time with her – as well as to give her main caregivers (Kev and Jay) some time to take care of themselves.

To those of you who know and love Dee, your love, prayers, and offers of support mean the world to them. They welcome your prayers for the best possible health, the least suffering, and the most meaningful time remaining for Dee, (and Kev also says pray for a miracle!)

Blessings and deep and sincere gratitude to each and every one of you, from Dee, Kev, me (Jessica Wolf), and daughter Jay

Emotional Whiplash

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The phrase “emotional rollercoaster” has always struck me as an inappropriate and incomplete definition of what Dee and I are living through right now because it implies fear-induced thrills. There was nothing thrilling about hearing on July 1st that my planned-for next 30 – 40 years with my beloved wife had likely been reduced to less than 10. Sure, miracles do happen—and you and we are praying daily for one to bless Dee—but, if I’m truly honest, odds are that we are going to lose Dee much sooner than any of us want.

 

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It also was zero fun hearing 12 weeks ago from multiple doctors that there was at least a 50-50 chance of Dee not walking out of the hospital alive. Not too many of you know this because, frankly, it’s so awful to contemplate that I have been reticent to relive it often. But, that’s the truth. It hurts, it stinks, and it blasts a hole through my heart every time I think about it.

Dee Platinum Chemo Day 1

 

No, “emotional rollercoaster” is wrong. “Emotional whiplash” is fitting, though, because it implies being catapulted randomly and violently through every single day with severe pain, intense shock, and deep and abiding sadness waiting as the ultimate reward.

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Damn, that’s gloomy… But, honestly, it’s accurate. Day to day, there are so many unexpected twists and turns that I get nauseous thinking about them. There is so much to stay on top of, so much to prepare for, so much to handle on the fly, and so much that I simply have to let go of… Anticipatory grief (I call him “Harold”) is my near-constant companion, and sometimes it’s all I can do to keep Harold strapped into the passenger seat of my life instead of allowing him to sit comfortably behind the wheel. As I said, chances are that I don’t have as much time remaining with Dee as I would like, and when I do lose her it will feel as though I’ve been crushed by a freight train. That day isn’t here yet, though, so what do I do to stem the tide of negative emotions in the interim?

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Thanks to my dear friend, Todd, I have stopped asking the questions: Why Dee? Why me? Why us? Answers will never come. We all know life isn’t fair, and, sometimes, sickeningly horrific things happen to absolutely stellar people (just ask my cousin, Joyce, and her husband, Mark, who last week lost their home in the Northern California wildfires—no rhyme or reason for that one either…).

 

Thanks to my dear friend, Dave, I am grateful beyond measure every single morning I open my eyes and see Dee lying there beside me—still breathing, still laughing, still loving, and still living. Man, she has a beautiful, infectious, all-encompassing smile—one of the best ever…

I try to make my time with Dee worthwhile. Our hours together don’t necessarily have to be productive; they just have to be kind, warm, funny, engaging, and filled with love and care. I want Dee to know she remains beautiful, remains precious, remains valued, remains brilliant, and remains herself.

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I am helping Dee get back to as complete a version of her former self as possible. We still have stuff to do together, and we don’t have time to waste. So, while the journey is extraordinarily rough at the moment, as the old saying goes, we must keep our eyes on the prize.

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I remind myself that none of us—ever—are guaranteed a certain number of years on this plane of existence. It could all end for any of us in the blink of an eye, so we damn well better appreciate the time we have while we’ve still got it.

 

Lastly, I cuddle my pup…

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Much love and gratitude to all of you always,

Kev

Confessions and Contortions of a Cancer Caregiver

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The following poem, my father’s favorite, captures nicely everything I have done correctly and incorrectly while helping Dee overcome Triple Negative Breast Cancer (TNBC).

 

Invictus 

BY WILLIAM ERNEST HENLEY

Out of the night that covers me,

Black as the pit from pole to pole,

I thank whatever gods may be

For my unconquerable soul.

 

In the fell clutch of circumstance

I have not winced nor cried aloud.

Under the bludgeonings of chance

My head is bloody, but unbowed.

 

Beyond this place of wrath and tears

Looms but the Horror of the shade,

And yet the menace of the years

Finds and shall find me unafraid.

 

It matters not how strait the gate,

How charged with punishments the scroll,

I am the master of my fate,

I am the captain of my soul.

 

Kev Standing On Queen

 

In our first tango with TNBC, I became Superman (and, honestly, that moniker is only slightly positive, at best). In some sense, the role was forced on me because—in addition to caring for Dee—I was caretaking her father who was living with us and dying from end-stage COPD, plus my mom underwent lifesaving femoral-artery surgery and aortic-aneurysm repair but then had to recover from a very serious, three-month-long infection. Of course, I continued running my business and serving my clients well too. I’m not regurgitating all of this to elicit sympathy or amazement. Rather, I’m laying out the facts—as plainly as I know how—to construct a foundation for explaining why “superherodom” wasn’t the best or wisest approach. I also want to declare publicly my intention to do it better this time around. Please hold me accountable.

 

Despite the fact that I am an extroverted extrovert, Dee’s original diagnosis—plus all of our concurrent family ills—oddly enough sent me into a convoluted, inward-seeking tailspin of isolation, despair, and defiance. Almost entirely, I ceased reaching out to those who loved me best. I did this because of pride, not wanting to appear weak, and, quite simply, because I didn’t want to inconvenience anyone for help with my emotional needs. We had MealTrain, rides to chemo in San Francisco, and some fundraising initiatives in place. That was enough, wasn’t it? People had avenues to help Dee—and she was the one with cancer—so we were good, right? Uhhhhhhhhhhh, no… I deprived most of my nearest and dearest friends of the opportunity to aid in my emotional and spiritual healing, cheating myself of critical support that would have staved off despair (more on that in the next three paragraphs…). Defiance became my default. Come hell or high water, I was going to guide my family through the maelstroms that had hit, and nothing—not even my own mental and spiritual health—was going to get in my way.

 

On the surface, I succeeded. Dee went into full remission, her dad had a relatively peaceful and comfortable transition out of this world, and my mom recovered fully from her procedures. However, I was a wreck, and my and Dee’s marriage was in tatters. Let me provide more color on each of these…

 

I had lost all sense of my true self. Innate optimism had been replaced by fear. Intellectual curiosity and expansive exploration of people, places, and ideas had been replaced by a desire for the known, well-defined, and safe. Spontaneity had been replaced by staleness; good humor had been replaced by dourness; lightheartedness had been replaced by anger and resentment; striving had been replaced by surviving; and my soul’s blaze had been snuffed out like a candle whose usefulness had come to an end. Result? Despair.

 

In every conceivable way, Dee and I had ceased to be wife and husband. Instead, we became archetypes for “patient” and “caregiver.” Dee focused on her healing and all of its accoutrements, while I took care of everything else—except myself. We forgot why we fell for each other in the first place; we became roommates instead of lovers; the fury each of us felt toward cancer got unfairly projected onto the other; and, most importantly, we stopped seeing ourselves through each other’s eyes. This last one was a monumental blow to our relationship because those images—Dee’s visions of me and mine of her—were better than the ones we carried in our own minds about ourselves. Result? Near-divorce at least five times.

 

Certainly, Dee and I were horrified when gobsmacked with the news of stage-IV metastatic TNBC recurring in her liver, lungs, and spine. However, our terror was not due solely to the fact that Dee could very well die much earlier than anticipated. We also were scared—and pissed—because we had worked our asses off to get back to a healthy and happy place as husband and wife. Truthfully, we had finally found “us” again just two or three months prior to Dee’s re-diagnosis on July 1. Seriously, how crappy is that? So, what did we do and to what have we committed?

 

The night of July 1, while still in the emergency department at UCSF awaiting a bed upstairs in the telemetry unit, I knelt down in front of Dee and made the following proposal to her: “I know the first time we went through this I lost myself completely in the role of caregiver. I couldn’t find a sound outlet for my anger about and resentment toward your cancer, so I buried it and plowed ahead—in defiance of my emotions and ignoring the trouble we were having in our relationship. That was my part in almost ending our marriage, the thought of which is sad and ridiculous because of how much we love and admire each other. So here I am, right in front of you, with your hands in mine, making the following commitment to you: I promise not to cease being your husband—first and foremost—throughout these next battles. No matter what, I will not leave your side emotionally, and we will fight this horrific disease as one. This time, I am not losing myself. Our relationship is too precious, and we don’t have time to waste.”

 

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So, Invictus, while a sturdy and gorgeous poem, does not encapsulate completely my ongoing journey with Dee’s cancer. I do think it captures quite well how I approached things the first time around, and, as I’ve said, that both succeeded and failed to varying degrees. These days, I am more deeply, more sincerely, and more honestly connected to those who love me best. I am making available to my dear friends and family members the opportunity to help me stay sane in the midst of an insane situation. They—or should I say, you—are stepping forward admirably. Thank you. You are making all the difference…

 

Every light has a story..

Platinum-chemo Magic

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Buddy Hospital

From Kev…

 

As many of you know from Facebook already, Dee’s Triple Negative Breast Cancer (TNBC) has returned with a vengeance. Because of my incredible wife’s immense strength and strong sense of pride—coupled with the distaste both of us have asking for help—we fear we have not been clear about just how serious this recurrence is. Dee is now Stage 4 metastatic with tumors in her lungs, liver, and spine. While TNBC is the most aggressive and fastest growing form of breast cancer, the one bright spot is that it is the most responsive to treatment, as long as it is caught early enough. We discovered Dee’s TNBC recurrence 5-8 weeks in, which is good, and our doctors are already blasting away at it with both radiation and a chemotherapy cocktail that is two generations beyond the cutting-edge treatment Dee received three years ago. Plus, John Park, our oncologist at UCSF, is running several clinical trials over the next year involving state of the art immunotherapy drugs. Dee might participate in one or more of those trials, depending on how well she responds to her initial regimen. So, we remain optimistic and, in Dee’s words, are engaged in the process of “extreme healing.” Please stand by us and reach out with your words, letters, love, kindness, care, and prayers. You, our community, keeps us strong. Thank you. More from me to come soon, but now please enjoy this incredible piece from Dee! 🙂

 

From Dee…

 

I have to tell you what happened last Wednesday; it was absolutely magical. And yes, I accepted chemo into my healing team on Wednesday too ;). Chemo and magic—two words rarely said in the same breath—so the back-story begins…

 

Kev used his birthday “do whatever Kev wants card” to bring me to UCSF ER. They diagnosed TNBC metastases in my lungs, spine, and liver, and I remained hospitalized July 1-6. They stabilized my meds, arranged for home oxygen, then we went back home for 5 days of radiation with the intrepid Dr. Kim in Santa Cruz.

 

Since July 1: My heart rate elevated to almost double my normal baseline. My tumor grew—surrounding and intermittently collapsing and constricting my airflow. Painful coughing spasms 4-6 times a day, lasting minutes each.

 

Mid-month, my heart rate consistently hits 170’s. Quick change of plans… ER in Santa Cruz, where a couple of nights at Dominican Hospital lead to stabilization and release, but the thinking is that heading back to UCSF might be a good idea. Happily we went.

 

UCSF drained almost 1.8 liters of fluid from the space around my lungs. My heart rate decreased and breathing got easier—but not enough to leave the hospital ever again without an offensive response to my cancer.

Fluid

Did you catch that?

 

My cancer’s drastic aggression called for an equally swift and strong response. I believe without radiation, drainage, and my first dose chemo, I might already be dead.

 

And yes I just fucking wrote that.

 

26 days after detection we hit back hard. Then the magic happened—hang on, I wasn’t stringing you along.

 

I got my first dose of chemo on July 26th to shrink the life-threatening tumor in my lung. As I said, we found it July 1st (Kev’s birthday), and it has aggressively been trying to kill me ever since, growing around and threatening to collapse my trachea completely. Terrible in it’s intensity. Terrifyingly fast.

Dee Platinum Chemo Day 1

The chemo went really well, and this first round has already made a positive difference. My heart rate and need for oxygen have reduced, so great news there. I’m on the tail end of steroids, feeling like I’ve flipped the switch and my body is now a healing machine. After the ecstasy of steroids, I know the fatigue drop will hit if my side effects follow as expected, but a deep well of healing has been formed, and I’m more than ready to jump in. Thought I’d tell you what’s up before I disappear for a few days.

 

Ready for the magic?

 

My mom, Gerri Lorenzo, came to visit me on July 26th. I have never felt her presence once since she died in 2012, but last Wednesday I was sitting in bed, eating and hanging with Kev.

 

The tumor in my lung had a spasm, not as painful as usual but a pressure, with warmth. Different.

 

I saw a flash of bright pink to my left, and there she was!

She had on one of her favorite pink visors, and her hair was beautiful silver (I could call it platinum, but that’s a stretch).

 

She had a big smile on her face, just radiating love at me. Gerri was wearing a shirt I have never seen her in before (where does she shop?!), white Capri pants, and her old ugly Disneyland fanny pack.

 

I held out my hand to her. She didn’t reach back and I thought, “Oh good, she’s not coming to get me!” Then I thought, “Damn, I hope they don’t order me an MRI for this.”

 

She stayed, just beamed love out, and her eyes and smile told me everything is going to be ok. I was supremely loved. And she was at peace with me and for me. Fully present. 1000% love. I was safe.

 

It was maybe 30 seconds? But absolutely real.

 

So.  Big day last Wednesday.

 

Thanks for coming on this wild ride with Kevin and me!

Seeing the world through pink lenses

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imagesOnce the Big C comes into your life, you can’t unsee it.

All of a sudden, it’s everywhere… Convenient movie plot twists. Beloved neighbors with a diagnosis on Friday and surgery today. Connecting with a woman younger than me with a reoccurrence / metastasis at support group, and then hearing she passed less than a month later. Immersed in my cancer coaching training with The Cancer Journey, I’m volunteering to listen, to see it all, to learn. I hear about the destruction of lives and families, of bodies and body images, of struggling minds and hearts.  I hear so many stories, even when I’m not looking for them.

Cancer sucks. So why do I willingly surround myself with it? Especially when I’m healthy and working hard to stay vibrant in my mind and body?  When Kev and I are working hard to move past cancer together,  and release the caregiver/patient roles we lived in for two years?  We ask ourselves, sometimes… But I know why.

People can be so beautifully real in the middle of this mess called life. Cancer cuts right through the bullshit. It invite us to reconnect with the core of our being, with our deepest WHY, with who we are, with what we value most. The amazing tribe of people who stood with me, who truly believed in me during that vulnerable and powerful time made it possible for me to be here now, with a little something extra to give back…I know without my amazing husband by my side the life we fought for- this lovely messy life we have- wouldn’t  be as sweet.  Recent studies say couples are more likely to divorce after the wife has a serious illness like cancer than when the husband is ill. (No studies for same-sex couples yet, but I’d be interested in the data;-)

It’s my dream to offer cancer coaching retreats, for women with breast cancer and their love partners…to focus on post-traumatic GROWTH, for the cancer warrior and her caregiver, and for them together. Building a new normal as a couple after cancer together is key. I’ve been searching, and the resources (and recognition for the need for them) are pretty slim.

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Of course, since it doesn’t really exist, Kev and I want to design it. We’re good at building a bicycle built for two as we’re riding it.  First we need live it ourselves, and move through it. And keep on keepin’ on moving through it.

We’re in process, and because we’re keeping it real, it’s not easy. Totally worth it, but damn. Did I mention it’s not easy?!

We also realize we also need breaks from cancer, so we’ve been in weaving special events and meditative quiet time reconnecting too. Joy and silliness with friends, and playtime on purpose.

Kev would be an amazing co-leader, co-designer and co-conspirator for our retreats… and he’ll connect deeply with the process of Caring for the Caregivers, and giving them tools for self-care and communication. It’s exciting to dream and plan…

I know we have a ways to go, as I want these retreats to be life-changing for all.  I know what worked for me, and what I want to do for us all. I’ve been visioning the right vibe and and journaling to build deep and meaningful content. So immersion is crucial, as I’m laying a solid foundation to build the dream….and practicing being grounded in health and positivity means I can keep listening and learning, and finding beauty in the mess.

jan-feb-work-in-progressSo, brilliant readers:  What would YOU like to experience in a healing retreat, focused on joy,  coaching and personal growth?

If you have a connection to cancer, what would you want to focus on, or achieve/experience yourself, with your partner, as a couple?

I’d sure love your ideas- you never know what seeds you might plant in my heart, or how large they can grow!

Blessings for a healthy, joyous and peaceful 2017

 

 

 

 

 

 

 

 

 

Hey TNBC tribe-webcast for you and your loved ones!

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Hello TNBC Tribe, just wanted to pass on this webcast specifically for caregivers of TNBC!

http://www.cancercare.org/connect_workshops/549-caregiving_triple_negative_breast_cancer_2016-10-26

Wednesday, October 26, 2016, 1:30 – 2:30 pm, Eastern Time REGISTER NOW

Registrants can listen in live over the phone or online as a webcast.

Kev and I will be listening in, too;-).  The stress is still real, and we’re still looking for tools, even after treatment…a bit of a surprise to both of us, though normal, according to the experts. Thank goodness for those experts!

Coping with the Stresses of Caregiving When Your Loved One Has Triple Negative Breast Cancer

I’d Rather be Breaking Plates…

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I’d Rather be Breaking Plates…

A long time ago, someone made me a license-plate frame that said, “I’d Rather Be Breaking Plates”…   I got some strange looks driving around, though that might not have been solely from the words on the back of my car.

I wasn’t prone to big fits of pique where I’d throw the crockery (at least not very often;-). I wasn’t Greek, either, though I’m not sure if Greeks still do toss their plates down after a particularly fulfilling dinner…or if they ever did.

No, I was all about breaking plates for therapy. Art therapy, specifically- Pique Assiette, or broken plate mosaics. There was unbelievable stress in my life, and I wanted – needed – to do something destructively creative with it.

mosaic bunnyIt was the mid 1990’s and you couldn’t go anywhere without stubbing your toe on a colorful stepping stone, decorative rabbit, mailbox or kitchen table. They were astonishing, whimsical, festive, and I was completely hooked.

I was attracted to the mindful attention to detail, paired with the freedom of physically breaking apart what was, and gluing back together what could be in a creative game. I was playing with possibility, on all levels. I got out of my head, and made time and space to create with colors and shapes that pleased my soul.

Breaking plates became fun, and necessary for my mental health. I went from a smash-and-grab approach, with a hammer and paper bag, to using tools which made precise and calculated de-construction possible… Anyone who knows me from that time might see parallels with my emotional process, searching for and practicing with tools and creativity to fix what had blown up.

I needed a break, literally. I was going through a pretty nasty divorce for even nastier reasons. My daughter was just starting school, and I was finishing my college degree, and working full time to pay for it.

mosaic bitsThose late nights after all of our homework was done, while she slept and I couldn’t, those were the hours I needed to connect with my shattered spirit. I wanted so desperately to re-construct my life. To take what was broken and make something beautiful from the pieces… To let inspiration guide me up and away.

 

In the end, friends were gifted my art-therapy creations, and I moved on, mentally and emotionally. I had found my aliveness, my spark again, and was making something mosaic heartsbeautiful from the broken pieces of my life.

I’d laugh with rueful fondness whenever I encountered one of my projects (usually collecting dust in someone’s backyard), but I knew the process was more important than the product. The utter ridiculousness of playing with my hands and creative spirit in dark times had gotten me through them.… I moved on, and I moved away, and my plates and tools and projects just didn’t fit into the moving van or my new life.

Fast-forward almost twenty years. I’ve got my degree, and my daughter is past college. I’m married to the love of my life, running a successful, fulfilling doula practice, surrounded by amazing friends…life had challenges, but I was the happiest I’d ever been.

Then my mom passed unexpectedly, my dad moved in with us, and we began hospice care for him at home… A year later, I was diagnosed with breast cancer, and every aspect of our lives- emotionally, financially, our relationship, our future…all broke apart. Then my dad passed… It was a deep, dank hole and the climb was steep, to give you the short version. We were lucky. I responded to double mastectomy, chemo and radiation, my sweet husband and I stuck through it together, and dear friends and family pulled us out and into the light.

mosaic mirrorI’m through treatment now, just follow-ups and prevention. My health and my hair are coming back, I’m slowly learning how to balance the work I love with self-care and a focus on joy in the moment. My husband and I are working towards post-traumatic growth, together and in our own lives… It’s harder than we thought, but we’re taking the busted pieces and cementing them back together in new and beautiful ways.

Even though the circumstances are completely different, I feel similar to the way I did in those dark times twenty years ago. I’m missing that spark of joy I used to wake up with, before cancer. To open my eyes and feel truly alive, just because I am…

I’mmosaic mirror bits looking for that muse within myself again- there’s plenty of external motivation out in the world, though there’s heartache too. I have to choose, every chance I get, to reconnect with what fills ME up instead of what could tear me down… To reconnect with what feeds me, not eats me.

I’m craving innovative re-construction, to physically put the puzzle of my life back together. I’m going to nurture and blow lightly on that spark of inspiration, to create a revolution so bright in my heart nothing can snuff it out.

mosaic mirror ballMaybe I also need to break the shit out of some plates… after all, one person’s birthday gift can be someone else’s art therapy, right?   Process, not product, as the mantra goes.

Let me know when your birthday is…and if you want some wabi-sabi crap from me in your back yard.  I’m in process again.

You’re welcome.

 

 

 

 

 

 

 

 

 

 

Two years ago today…

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Two years ago today…

August 6th, 2014…two years ago I got diagnosed with breast cancer. For me and others with TNBC, the highest risk of re-occurance is within 5 years of diagnosis, so this healthy first year post-treatment, with no evidence of disease (NED) is a success and a relief for us both. Anniversaries are perfect moments to pause, reflect, re-prioritize, and vision…be it a birthday, a new year, or cancer.  Add something sparkly to your glass and loved one’s to share it with and you’ve got a party, even when the occasion being marked sure didn’t feel like a celebration at the time.

We got to mark the occasion last night with wine lovingly brought by dear friends, and then we shared another bottle from our trip-of-a-lifetime 6 weeks ago to Italy.

 

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Venice, Italy, with Kev and Antoinette, June 2016

We visited Kev’s Sicilian family, and brought his mom Antoinette to meet her first cousins – it was incredible.  On the night Kev and I met 13 years ago, I joked he should take his mom to Sicily and I’d jump in his suitcase… Without cancer re-prioritizing us,  we would have kept postponing it. I’m so happy we didn’t;-)

 

 

 

We’re also remembering my sweet dad who passed last July, and marking what would have been my parent’s 56th anniversary on August 4th, also  the date we buried them with military honors last year in Golden Gate Cemetery.

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I still can’t believe it’s ONLY been two years, since cancer/ treatment, and only one year since my dad passed- I feel like I’m just walking out of a crazy movie where the plucky heroine finds out she’s a lucky super-hero with super healing powers, but only after fiery car chases, drug-trips, fighting tiny dragons with her own blood, losing both her parents and learning how to be strong without them, facing challenges that threaten to pull her away from her lover/knight, fighting off their common enemy together, and then ending the show with a magic carpet ride to exotic locations. Academy-award nominated feel-good drama of the year!

Except for the car chase, it’s all true. I’m glad to be out into the sunlight, and back to ‘real life’. I know my life is changed- today is a day to pause and remember what we went through to get here…and I could NEVER have gotten here without all the love in my life. Love is my priority now.

Self-love, and not seeing it as being selfish, just self-sustaining. Loving my new body after reconstruction and doing the work to be strong and healthy as possible. Loving myself to be vibrantly healthy, and all that means, inside and out.

Loving the people in my life FOR who they are, and AS who they are…and choosing to see the best in them, and in myself too, even when we all fall down.  (I can embrace the contradictions, too)

a good lifeLoving the lessons I learned throughout the shit-storm of the last two years…and washing the stink off, too. (No mud, no lotus, right?)

 

My sweet husband and I are doing some sort of ceremony / ritual to mark today’s importance.  I don’t know what it is, yet…but it may be clothing-optional at some point! (Wait…Did I just write that out loud?)

All I know is I’m officially asking him to tender his resignation as my champion care-giver through cancer. I know we’ll be forever changed, but we’re leaning into post-traumatic GROWTH now.  A year ago, on the one year anniversary of cancer diagnosis, and just 2 days after burying both my parents, there was no way to do that.  To even do more than dream about positive growth after the f’ed up circumstances we’d been floundering within, honestly.  We did a great job, in the moment. I mean, phenomenal coping skills were used by all- it was a terrible time. 

I’d like to quit that excellent level of coping now. I’d like my sweet husband to feel like he CAN quit taking care of me at that level- because I’m capable enough, and strong enough to take great care of myself, with enough left over to take care of HIM when he needs it.

I’m not feeling as strong or as capable as I did 2+ years ago, but good enough. I’m not at 100% yet- I’m running at about 80% capacity right now, and I know it.  (Self-love, baby…I know chemo-brain goes away, and my body wants to keep healing and getting stronger…I just keep reminding myself to be patient and keep moving forward. IT GETS BETTER is my new mantra!)

Moving forward feels good, one step at a time…

that'd be greatI attended my 500 birth as a doula last month…and I am helping vision and construct a new sustainable doula team model to keep serving birthing families well but not burn myself out…or subject my body to stress and immuno-compromising nights without sleep and sustanence. I love the team of doulas I’m woking with and feel so blessed we get to keep doing this work without killing ourselves in the process….

be in the moment TCJI’m helping develop promotional outreach strategies for The Cancer Journey, and starting their Cancer Coach training next month… It was exactly two years ago today I asked, “Where is my cancer doula?!”    Well, I found a tribe of cancer doulas, and I’m going to be one, too.   (www.thecancerjourney.com)

Two years seems like a lifetime ago, and yesterday. I still can’t believe it all happened…thank you for sticking  with us. It’s been a hell of a ride, but we’re about to get off this huge roller coaster, and try some more scenic routes.

Ready for  a kayak on calm waters, anyone?  I’ll bring the snacks.

Being able to give back and move forward  feels like a gigantic move in the right direction…  XOXOXO

 

 

Dee- That was Then, This is NOW

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Dee- That was Then, This is NOW

This is the part of me
That you’re never gonna ever take away from me…

So yeah, I just dropped Katy Perry on you. I’m lame enough that I had to look up who was singing (and even more lame by admitting it here). But by the end of the song I had the radio blasting my newest cancer-survivor anthem so loud the dog jumped into the backseat and covered his ears. Or maybe it was my singing…

Post-treatment limbo sucks. I was never good at limbo anyway (the dance or the purgatory between hoping and knowing…). This prickly place is poking me in all kinds of new ways. I’m growing, I know. Healthier, for sure. But calm, centered, trusting, sure of my self?  Sigh.  Graceful?  Ha. Knowing…Fricking anything? No. Or at least, not yet.

Most challenging is figuring out who I am, how do I define myself, post-cancer.

Am I a survivor? (Doesn’t that imply an end to cancer? Is there ever really an end when my whole life now revolves around making sure it doesn’t come back?)

Am I back to being a full partner, wife, mom and friend again?  (Um…this is a whole ‘nother blog post so stay tuned…;-)

Am I still a doula? (Is that still a healthy vocation for me, physically and emotionally?) Well, let’s tackle this one today…shall we, Dear Reader?

I’ve had some lovely “easy” births, repeats or other second-time mamas since diagnosis, which tend to be shorter and sweeter all around.  Finally, in November I decided I was strong enough to take some first-time birth clients again, but Kev and I agreed I’d only take only two instead of the four births I was taking every month for years before cancer, for a bit. Test it out. See how it felt…

I was a little worried about maintaining my healthy life/work balance, especially since my optimal daily self-care regimen takes so dang long…but after a year plus of not working much it felt good to contribute  financially. I honor the idea of doula sustainability and teamed up with wonderful back up doula sisters, hung out my shingle and booked up fast, thanking my lucky stars along the way.

I had a few longer, more taxing first-timer births, but fulfilling and doable. The pacing was great, plenty of time in between babies to catch back up with my sleep and self-care, and allow me to attend various cancer support groups, yoga and on-going mindfulness workshops. I was getting stronger, in all ways. Kev and I were working on our post-treatment reality, and making mostly forward progress past the constricting caregiver/patient roles. (Again, stay tuned).

Then the shit hit the fan. Three medical inductions in eight days…I spent 27 hours, 24 hours and 21 hours at those inductions, respectively, and answered calls and texts all night long on my nights home. Stars didn’t feel very lucky…though I did try some new tricks with good results (tools from my own personal arsenal of coping methods through cancer) and deepened my practice. Earned kudos, hugs and appreciation from a favorite midwife and various nurses. Made a positive difference in all three birth experiences.

But wow- I don’t ever remember feeling so depleted after a string of long births, and so done. I had to sleep in the parking lot of a bar on my way home from the third birth- feeling totally unsafe to drive and also unsafe where I was sleeping. I love being a doula, but if this is how it feels…it’s just not sustainable for me anymore.

I can’t believe I just wrote that.

I was so exhausted it reminded me of a chemo hangover. Except I got scared I was causing cancer cells to form again- that the week of stress, sleeplessness, lack of self-care, withheld frustration and spotty nutrition (the healthy food I brought ran out all three times, and I packed a LOT)  might be the precursor to cancer, the way it happened before diagnosis.  (Though chocolate is a mainstay in my birth bag, and must always be…)

The fear that I could give myself cancer again by going back to the work I loved really struck me hard. So…WTF was I going to do now?

Life does feel fluid again- moving in a natural, forward current for the first time since 2014. That is fantastic- and I am so thankful. I just have no real idea what lies beyond the bend in the Limbo river…   I know what I don’t want. So what do I need?

I need true physical and emotional sustainability. I need to unplug, and not be on-call. I ned to make plans with loved ones and keep them. I need to sleep in my own damn bed.

How do I do that?   (Hold please, while I wrestle my inner child who really wants to throw a tantrum here…because I still want what I want even when it’s not good for me…)

OK Universe. I’d like to teach childbirth prep classes, concentrate on supporting birthing families without being in the trenches, as it were. I’d like to mentor newer doulas, my 500-ish birth and business experience has to be worth something, right?

I’d like to support families with cancer- I’ve certainly learned a lot and it’s incredible how much the doula skills overlap with those of a cancer coach…and yes there IS such a thing out there. The cancer doula does exist- and I’ve been asking for one since diagnosis August 6, 2014.  There’s a certification/training in September…I’m working it out.

Maybe I need to giggle and finger-paint with some little kids for a while too…just while I figure out the rest?

I’m exploring, and I’m inspired again. I do feel a spark and a spunk I haven’t felt since cancer hit. I’m enjoying it, as much as the El Nino high surf advisory and the pink cherry blossoms of Spring…I feel the wheel turning.

I think this is what resonated with my new post-cancer anthem.…no matter what cancer took from me,  it’s never gonna ever take away my inspiration, my skills, my curiosity, my heart or my drive to make a positive difference in the world.  Cancer didn’t take ME away.

I’m going to keep listening to that song. Keep belting it out as loud as I can.

Even if it scares my dog.

Now look at me I’m sparkling
A firework, a dancing flame
You won’t never put me out again

_______________________________________________

PART OF ME  https://www.youtube.com/watch?v=FZ-9jHj3Orw

Written by Katy Perry, Bonnie McKee, Dr. Luke and Max Martin

Days like this I want to drive away
Pack my bags and watch your shadow fade
You chewed me up and spit me out
Like I was poison in your mouth
You took my light, you drain me down
That was then and this is now
Now look at me
This is the part of me
That you’re never gonna ever take away from me, no
This is the part of me
That you’re never gonna ever take away from me, no
Throw your sticks and your stones
Throw your bombs and your blows
But you’re not gonna break my soul
This is the part of me
That you’re never gonna ever take away from me, no

I just wanna throw my phone away
Find out who is really there for me
You ripped me off, your love was cheap
Was always tearing at the seams
I fell deep, you let me down
But that was then and this is now
Now look at me
Now look at me I’m sparkling
A firework, a dancing flame
You won’t never put me out again

Dee: Life-Choosing the Next Best Thing…

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That title sounded melodramatic, I admit.  I’ve got my reasons, though…

I’m doing great physically- thankfully and purposefully so. Emotionally, I’m feeling really centered, though more like a newly competent sailor in unpredictable waters…I’m upright, I know what I’m supposed to do in a storm (in theory!) and the compass is working but I’m still checking the weather all the time and keeping close to shore. So far, so good, and the life jacket is cinched pretty tight;-).   I’m practicing a balance of  self-care, and caring for others…as a doula, wife and friend.  Balance is good work, and a huge gift.

I get my stitches out in a couple days…I’m looking forward to getting the all-clear to do yoga, swim and lift more than 15 pounds. And I won’t lie, I’m over the Franken-Boob look. Since my last “exchange” surgery Dec 3rd I’ve been in another healing limbo, and I’ll be as happy to be OUT of that in-between emotional space as to get the ugly black spider-leg threads out of my nipples…(yes, that’s exactly what Franken-Boob means;-). My exchange surgery took the heavy, rock-hard water balloons out of the mastectomy-emptied space and inserted softer, silicone implants. Since I was lucky enough to have access to nipple and skin sparing mastectomy (Thank you USCF), the implants were taken out of the scars already used for the mastectomy, on the edge of my areolae.

I really didn’t want a double mastectomy in the first place…I liked my old boobs;-).  If you need it though, get the head of Plastics at UCSF for your recon, ladies. The girls look the absolute best they possibly could, under the circumstances.   (Oh just drink your damn kale smoothie, and get over it…you’re alive, aren’t you? no boobs=no cancer=no whining!) Sigh.  OK.  Fuck.  Alright already!!!!

Just choose the Next Best Thing, right? If you’re going to have cancer, that’s the mantra. I learned that one first with my doula clients, coaching parents in labor to make the best choice available in the moment, even when and especially if what they originally wanted was no longer possible. Even and especially when all the options suck. You pick the best one possible. The one with the least suckage. Pick the door that looks the least terrifying, that makes the most sense to you in a moment when nothing does. Put on your big girl panties and let’s go through it together. Don’t look back.

That’s not quite how I present it to my birthing families, of course. I try to make it as gentle as possible. But the mantra works, and for cancer too. For most un-wanted decisions we need to make.

Can’t get what you want? Choose the Next Best Thing.

Knowing this, I felt ashamed, in a way, to allow myself any negative, apprehensive feelings about my exchange procedure. I was cancer-free! I had every potential for great new boobs! I could get ON with my life and be done with the last 18 months of…whatever the hell THIS shit was!

This is the fun surgery, if that exists…at least it will be when I’m recovered and never have to wear a bra again! It’s pure plastic reconstruction, and an outpatient procedure.  (Kev and I both were surprised to hear that, since we’d packed an overnight bag…poor guy, he had a very long and hard 19 hour day driving and waiting and care-taking and then driving home from UCSF while I got good drugs and new boobs…)

I opted for  the “gummy-bear” texture for my implants. See, that was fun, right?

My daughter and Mom-in-Law came to the hospital, brought me flowers and knitted scarves, and laughed at my crazy post-anesthesia comedy routine. (They really should have recorded me this time. I still don’t believe I asked the handsome male nurse to take his clothes off and dance for me, nor do I see myself requesting everyone take their clothes off just because I was having a hot flash. Hmmph!)

But…checking back into UCSF for the surgery was actually pretty intense emotionally. I expected the flash-backs to chemo, and a taste of that out-of-control feeling that came before my double mastectomy. I did not expect to be breathless with fear of re-occurance, that the surgeon would open me up and find sticky black tumors hiding under the plastic expanders. My family said I asked, many times, for the reassurance they hadn’t actually found more cancer lurking.

I hadn’t expected that fear to stick.

I guess you can’t really get away from fear-and it can be a positive, motivating force. I WILL use it as such, but I have to make sure and do it on purpose. Be Here, Right Now- and keep making “here”  the healthiest and most joyous and least-stressed space possible. Because the fear is still here, too. To paraphrase what Elizabeth Gilbert writes in Big Magic, fear will always be along for the ride, but it is never allowed to drive. (Yes, this is me, putting on my own big girl panties, right now…)

It’s also a challenge when the news about cancer- globally and personally- just never stops. I read that nearly 2 million people will be diagnosed with cancer in 2016. My heart is also going out full strength in many different cancer-related directions right now.  Just in the last week, a dear neighbor lost her father after a long battle. A beloved friend of over 21 years just lost her mother to a newly found metastatic cancer. And now, a sweet and generous friend, younger than me, just diagnosed with a particularly shitty kind of cancer, just as her career is taking off.

This week!

Two million people will be diagnosed in 2016.

Two million people breathless with fear. Staggering.

A year ago, I was getting ready for my double mastectomy. Bald. Nauseous. Two sick parents. Missing the work I loved and the stability it brought. A fundraising auction in the works. Surrounded by so much love and support and needing every bit of it to get through, and I still don’t know how it all happened so beautifully. I remember feeling unbelievably thankful and exhausted and blessed and terrified, all the time. Just a year ago?

I just keep thinking. I’ve got my life back.  I’ve already lost 3 amazing women friends-my age or younger- to this fucking disease.  Why waste a minute more on fear? I have a second chance at LIFE. (Wow you thought the title was melodramatic)

Seriously though that’s how I feel! I am so crazy in love with this life and these amazingly beautiful beings I get to share it with (and yes I mean YOU!).  No patience left for BS or petty every-day crap taking any joy out of my life with Kev and those I hold dear. Done with fear holding me back from doing anything, whether it’s saying the truth I’ve been holding in, or signing up to be hurt or taken for granted out of obligation or history. Done.

Life is just too damn short, and my time too precious.

So, once again, louder this time…I hear “What Next?”.   I hear it with every tinkle of my wind-chimes, every restless shake of my little dog’s ears.  This time though, I have new answers.  I get to move forward. I can take birth clients again, and take care of myself in harmony.  I can open up the door to cancer-coaching, as a natural progression of my doula practice, and make a small, positive difference in the lives of a few of those breathless millions.

Be my own coach in the process- walk my own walk.  I fully expect to fall down but that will just make me a better coach, right?

Luckily,  I CAN get back up, and keep choosing the Next Best Thing…whatever that is;-)

 

 

Dee: The NEW New Normal?!

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Dee:  The NEW New Normal?!

Hello dear ones!

It’s been a while.  So much has changed, I’d like to catch up, and maybe even get some of your thoughts on moving forward…

This blog was meant as a tool for processing life with cancer…to help us fight for my life, for our lives together.   Now, we’re trying to figure out how to live life without cancer. Both Kev and I are reeling in this brave new world.

Sounds odd, I bet. Whiny, even.  Life should be easy, post-cancer, right?  Or, at least, easier!  And of course it is, because I think back to those long terrible chemo days and I can’t believe it actually happened. Some days I don’t believe it’s over, either.

I’m lucky I’m here riding it out. A friend who didn’t survive breast cancer just missed her birthday, and the Facebook reminder of her special day actually brought me to tears.   (First it got me really angry though, truth be told).  

I ride that roller coaster between anger and tears a lot, these days.

I laugh, too, though, every day! And I’m SO thankful. Hopeful. Scared and unsure and inspired and excited and pushing myself, every day. Some days I berate myself if I forget to do my PT or take my supplements correctly, and then I freak myself out. What IF?! ( Though the supplements are a  little complicated: 36 pills/powders, taken 4 different times a day; some with food, some on an empty stomach, some before 2 pm so I can sleep…one with ‘a healthy fat and some black pepper to aid absorption’. Some with a shot of whisky…well, no that’s actually not true.  Unfortunately.) 

Other days, I’m over-compensating any lapses with a level of self-care that’s not really sustainable, in the real world, anyway.  (I’m spending huge blocks of time doing weekly acupuncture, chiropractic, yoga, aquatic lymphatic drainage, then farmer’s market shopping, West Cliff sunset/whale watching; aiming for fresh smoothie-making, home PT, lymphatic care, sugar/guilt-free food prep and guided meditations every day…). This doesn’t even include scheduling quality time with my sweetie, friends or family?!  And now I’d like to go back to some semblance of my old life too-how does that work?  (Oh, and by the way, don’t worry about doing it all perfectly cuz STRESS and GUILT are really the biggest factors for cancer reoccurrence…right?!)

With the level of cancer-fighting self-care prescribed for me by the myriad of supportive professionals, there isn’t time for much else, and ain’t nobody got time for that, at least not every day. Do they?

First world problems, I know.  How fortunate am I to have insurance that pays for my PT, acupuncture and lymphatic support? To have a community that offers free yoga to cancer survivors? To have amazing healthy organic food within walking distance, and to have the ability to walk there and to pay for it?!    How F’ing blessed and lucky am I to have an amazing partner who encourages my self-care, even while taking on more work and stress himself to do so?

What about my beloved Kev’s self-care, you ask? Hmmn…Well, I’m encouraging him, and I’m taking on more family responsibilities than I was during cancer treatment…but yeah. No ONE person in a marriage can spend this crazy amount of time on themselves without it affecting the other negatively. (Now what was I saying about stress and guilt? And which one of us am I worried more about at this moment?  Double Hmmnnnn.)

I don’t want to speak for him, and I’m sure he’s got a good blog or three in him, but I think it’s getting easier for Kev as I get stronger.   We’re both so scared my cancer will come back that my imperative is to figure this shit out now, and calibrate adding in real-world responsibilities in a truly sustainable way as I gain mastery. Or at least competency. Or maybe just figure out how to set multiple recurring iPhone alarms for everything?!  (Serenity NOW…)

I’m reminded of the man who can lift a full grown cow, but only because he did it every day since the cow was born.  (Or, “Look Honey, now I can juggle SIX fiery torches, in between appointments, while meditating and drinking an organic blueberry smoothie, blind-folded!  By the way, where did you put the fire extinguisher?”)   

I’m hoping to help Kev shift his (understandable) vision of me as a vulnerable, at-risk patient into a healthy and fully capable partner, ready and able to take on more than my own damn self-care…and that will get easier after my hair, boobs and scars get back to a new-er normal. (My exchange surgery is Dec 3rd.) And by the way, this is MY hang-up.  I’d like him to see me as a sexy, smart, capable and funny go-getter…but… well… shit. I’d like to see myself that way again, too.

Gotta crawl first, right?

I’m looking forward to Kev being able to see himself as more partner than protector, ready and able to live life with me instead of fighting for my life.  It’s another corkscrew turn on the New and Improved Balancing Act roller coaster. We’re both a bit wobbly, but holding onto each other as best we can. And as expected, my life even post-treatment has it’s own set of day-time TV worthy twists, which I will elaborate on in a minute…

We’re realizing our post-cancer relationship is not the same. In some ways, it’s better. I have an even deeper love for my man, and endless admiration…and a staggering level of gratitude.

Realistically, in some ways, the change sucks. I loved our pre-cancer life and even though our priorities have shifted in a really healthy way, the aftershocks are scary. We need to address some probably normal survival-mechanism–but still problematic–patterns forged during cancer. We’re talking about how to form a conscious re-perception of of each other,  to see the new in each other through fresh, unbiased eyes. I feel like we came off the same battle-field, are stronger for it but the fight changed us, gave us new stories, left invisible wounds. I think I missed some of his story.

I want to meet myself again, and meet Kev in this new quiet peace. I want the peace to last.

So I’m working on balance, in all ways. Work-life balance. Energy input-output. Patience-pushing myself. Acceptance-striving for positive change. Hope-realistic research. Expansion-contraction.  Perfection-process and practice. For those who know me, you can guess I’m a little clumsy here too.  I’m in a really good place though, don’t get me wrong. With all this extreme self-care, I should be!

My patience is higher now, after radiation treatment, as is my endurance.  I’m taking on repeat birth clients again, and loving it.  I have a deeper reserve of empathy and advocacy for my birthing families, and I don’t sweat the small shit nearly at all.  I am appreciating being able to go more than 4 hours without needing a nap!  My chemo brain is finally going away, so now all I have to deal with are my normal brain-farts, instead of those really smelly chemically-induced ones;-).

Baby steps.

Kauai 10th

kauai hikeKev and I celebrated our 10 1/2 year anniversary in magical Kauai…(our 10th got a redux since we were in chemo on our anniversary). Thank goodness for all those credit-card points!

Kev looks quite handsome in his lei, I must say!  I was still pretty bald, but he says he didn’t mind;-).  It’s a blessing to have that healing space after cancer treatment ended. We needed a refuge, to help recover from what was and to give us some reserves for what came after…

My sweet dad passed about a month after his 75th birthday…he took a sudden down-turn about a month after Kauai.  I think he waited until he knew I was going to beat TNBC. We had been providing hospice care for his advanced COPD in our home for about 3 months, and our family came together beautifully to care for his medical, emotional and daily survival needs…I was blessed to support him as he passed peacefully at the VA hospital.Dad's 75th

Right after he died, I got really clear that I wanted…needed… to move out of the house in which I had survived cancer treatment, and where my dad received his hospice care…a fresh start.

That very night, I found us a new beautiful place, HALF the size of our old house, and so we got rid of HALF our stuff. Very freeing! We moved, about a month later. It’s our little oasis, and I love it. I’ve had the luxury of setting it up, so I’m feeling very grounded here…Kev? Well, let’s just say he didn’t have the absolute clarity and need to move that I did, so he’s had his own experience, but I’d say he’s settling in now.;-).

After losing both my parents in the last 3 years, I am feeling a primal mama-bear urge to spend more quality time with my own cub…but now my daughter’s moved three hours away with her girlfriend. I know, she’s building her life, and now that I’m healthy she can get back to it, but…I wish we were closer.

Priorities have shifted, so now we’re taking steps to shift reality–much harder!  Extreme loss and grief, balanced with new-found freedom. Feeling like life is incredibly short, and hoping it’s long enough. Loving this precious time to think, and breathe and BE…and feeling a new-found sense of urgency to explore, to experience, to DO.  Life is a balancing act, right…

Here’s my question to YOU, Dear Reader. If Kev and I were to turn this blog into a book, would you buy it for your loved ones fighting cancer? Recommend our unique perspective, as a couple moving through breast cancer together, to others?

We’d love to know.  There are over 1350 of you signed up for our blog, from over 25 different countries… Amazing!

Thank you for sharing the conversation…I know it’s been good for me. Hope you feel the same. I’m sure Kev will be following up with his own new blog entry soon, because, as you know, he ALWAYS wants to have the last word! 😉

Dee: My Own Private Relay for LIFE

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Dee: My Own Private Relay for LIFE

Somehow, this year of all years, I had missed all the signs. You probably didn’t–or the purple buggers haven’t arrived in your town yet. The Relay for Life, cancer awareness on steriods, where teams commit to raise money per mile and take shifts over a 24-hour period to walk, around and around, and honor or remember cancer warriors and fallen soldiers.

Dee's Famous  Lavender Lemon Bars

Dee’s Famous
Lavender Lemon Bars

24 hours!? I’ve only done it once before, in 2008. My dear friend, Ruby, organized it to honor one of our own who won decisively against pediatric cancer, and our team was, of course, the Pink Ninjas–cuz that’s what we were, dammit! Finally allowed to let our alter-egos out to play, we Pink Ninjas kicked ass, raised money, pitched tents, worked together, cackled all night long and produced some amazing baked goods to sell while doing it…and in style, I might add! There was plenty of fun planned, including a themed Zombie Walk at midnight and a 2 am taco bar, to keep the masses happy while walking.

One of the most touching and sobering moments of the relay was the Luminaria Walk. For a $10 donation (like all the $ raised, a huge % of proceeds goes to cancer research), you get to decorate a simple white paper bag–lit by a candle–either in honor of or in memorial to a loved one with cancer. These would illuminate the circular path we’d share all night long with the hundreds of other participants. I’ll tell you, I had NO IDEA how much that would affect me…and never did I think one of these would shine for me 7 years later.

IMG_0105The Luminarias I did in 2008 were for beloved friends whom I hadn’t really known how to support through their battles. I just didn’t get IT, I hate to admit. (Maybe the more compassionate of you readers might tell me that since I’d had no personal or family experience with cancer, that was understandable…but that’s just not true. I was fucking clueless, and I should have reached out, done more. I’ve experienced so much love from friends through my own breast cancer–from many with only a connection to ME and not cancer in general–that I’m ashamed to admit I was one of those who didn’t know what to say to those I loved. I was paralyzed by fear and guilt that I would say the wrong thing…and I’m sorry for that.)  That first Relay for Life gave me better tools, as I was inspired by the stories walking around and around with me.   Now, there are  perfectly-worded empathy cards for cancer warriors that dumb-asses like me, with more emotions than words, can send to those they love. (See examples below). My first Luminarias were an early step toward starting those conversations and honoring the ones I wanted to support more gracefully.

IMG_0106 100_3080 100_3079

It was an emotional event. Luckily, I was surrounded by friends with whom I could be vulnerable and all their kids, so I could shake it all off and be silly, too. (Ample opportunities are manufactured to keep silliness going as the focus and stories can get pretty heavy. That year’s schedule included s’mores at 2 am, and I was looking forward to taking that sticky walking shift, along with the all the teens in our tent city!) 

That year, I was on-call for a doula birth, and I had to leave to attend to one of my laboring mamas before the s’mores came out. I supported that family and welcomed their new little bright light while wearing my Pink Ninja shirt, and luckily it was still clean enough to wear home afterwards;-). Honestly, I think a birth was just what I needed that evening–a fresh beginning, the promise of everything in that new life. It’s all perspective, right?

A little something you might not know about us birth workers…we get high from birth. It doesn’t really matter if we’ve been awake and purposefully positive through two or 20 hours of intensity, mess, and professional mediation in unpredictable situations. Once that baby emerges, we are flying on some age-old hormones, sacred joy and the satisfaction of a job well done. Damn, it’s good, and there are many of us who call ourselves Birth Junkies for just this reason;-).

After a lengthy one, the birth high is usually just enough to get me through the 2 hours of immediate post-partum needs and my drive home. That particular birth had been fairly short, and I’d been gone maybe 9 hours total. After “fast” births, I can stay pretty jacked up, and in the middle of the night sometimes that’s a bummer. On the Relay night though, it was perfect, as I had a party to attend, even though it was before sunrise! The Pink Ninjas who were awake were happy to see me and hear my birth stories, so I jumped into the next walking shift. (Breakfast burritos, bonus).

2015

Life is a bit different. The Relay for Life is back in town…no Team Dee pulling an all-nighter with matching shirts, though maybe that would be fun in a year when I’m not going through–or recovering from–any kind of cancer treatment myself. In fact, I didn’t even know it was happening this weekend!

I’ve been really wrapped up with my own healing, dealing with lymphedema, and coping with my dad dying by inches in front of me from advanced stage 4 COPD. Supporting my dad and providing hospice care in our home has been quite an experience for Kev and me–and a blog of it’s own, believe me. The last two weeks have been much harder, as he’s going through a normal-but-heart-breaking series of declines and plateaus…and we’re the ones responsible for his life or death: And, yes, we do save his life now, on a daily basis.

We have had to learn how to give the right medications in the correct order and dosages to stave off medical crises and asphyxiation. Afterwards, we keep saving Dad’s life by hugging him and bringing him more Death by Chocolate ice cream on demand. Because of this situation, we don’t dare leave for too long, just in case Dad has yet another breathing attack. He knows what to do in the early stages, but if he doesn’t address it right away it can get scary really fast. It’s a challenge for him to set up his nebulizer on his own during an attack that makes him feel as though he’s drowning.IMG_4899

Even so, it’s unbelievable. The addiction to cigarettes is so deep and strong that one time we caught Dad on the back porch, portable O2 tank turned off in his lap, smoking away. After he had gotten some “fresh air,” as he called it, (don’t even get me started) the only way he could physically make it back inside was to do an inhaler and let the oxygen tank breathe for him until he could hook back up to the O2 compressor in his room. Though the conversation was painful for all of us (it was clear Dad was trying to hold onto his last semblance of independence), these field trips out to the porch obviously no longer occur with the oxygen tank in tow…!!! :-/ We help Dad out to the porch to smoke his one cigarette per day, but all the oxygen gets brought back inside. It has been quite an experience learning how to balance respect for Dad’s wishes and autonomy with common-sense safety and responsibility.

I can only imagine the empathy cards for COPD. “You know it’s going to be a good day when you don’t blow yourself up!” Ahem. Sorry. If you don’t laugh, you’ll just cry, and yell, and drink, right? (Or all of the above).

Needless to say, we’ve got a bit going on. Kev’s students are all heading into finals week, so that means he’s dealing with stressed, hormonal, overextended crazy people. (And that’s just at home! The students are basket cases too!) So I was pleasantly surprised when Kev invited me to walk the dog down to the Relay site, do a “victory lap” and come back. I could tell it meant something to him, and even though I was tired, we went, holding hands and enjoying the sunset.

When we arrived, the party was definitely happening, though the crowd seemed smaller than before. They were almost done setting up this year’s Luminarias, and when Kev stopped at the craft table and pulled out his wallet, I knew this was why we were here…

Light *Love* ForeverCANCER-FREE! Thank you, Team Dee

Kev, my love, we’re going to be walking a Victory Lap together for the rest of our lives… Thank you.

Every light has a story..

PS: Even though sugar is not a substance found in a cancer-fighting kitchen, I may still make these for VERY special occasions. Here’s the recipe for my famous Lavender Lemon Bars. Maybe one of you brilliant folks can modify this to be a bit more healthy, I don’t know, gluten free flour and coconut sugar? Or maybe I’ll just have one really teeny tiny small bite of the traditional recipe….everything in moderation, even moderation, right?;-)

Dee’s Lavender Lemon Bars                          

1 cup organic pastry flour

1/2 cup butter, softened

1/4 cup Dee’s Organic Lavender Powdered Sugar (1/4 c lavender in 1 lb powdered sugar, let sit overnight)

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2 eggs

1 cup organic white sugar

1/2 teaspoon baking powder

1/4 teaspoon salt

2 teaspoons grated lemon peel

2 tablespoons lemon juice (Meyers off the tree are best)

Heat oven to 350ºF. Mix flour, butter and Dee’s Organic Lavender Powdered Sugar.   Press in ungreased square 9x9x2 pan building up 1/2 inch edges. Bake for 20 minutes. Beat remaining ingredients until light and fluffy (@ 3 min). Pour over hot crust. Bake until no indentation remains when touched lightly in center (@ 25 min). Cool and cut into squares. Sprinkle some Organic Lavender Powdered Sugar on top, enjoy!

Empathy Cards for cancer patients, designed by Emily McDowell http://emilymcdowell.com/collections/cards/Empathy-Cards

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Dee- The New Normal

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Well, Dear Readers, we made it. My last day of radiation was last Thursday May 28th, also my beloved daughter’s 23rd birthday. I am red, raw and exhausted…but I’m done! It’s been a strange new normal, getting up for radiation (RT) every weekday, and my time was set for 7:15 am…WAY too early. I had high hopes of walking or working out with my mama friends immediately after RT, and for a week or so that worked…but honestly in the second week I showed up in my PJ’s and then went right back to bed;-). Then, I got the time changed to 8:45, and that was more reasonable, though I missed those mama workout buddies who like to burn calories and miles right after school drop-off. I didn’t have the energy anyway, unfortunately. From weeks 3-6 I was sleeping about 15 hours a day:(.

Since I wasn’t going to run off after RT ( literally) I took it a little slower, and got to know my fellow cancer warriors. The books say to be wary of engaging your waiting-room buddies, (“you never know what they might say to throw you off your positive, purposeful journey”) but I found it mostly therapeutic, and to be honest, confirmed that even as tired and overwhelmed I felt,  I was really doing my best. There were definitely others not doing as well- physically or emotionally, and I shared a little extra energy for them when I could. Most of the talk started with our hair… the lack-therof, or the growing-in process.

I’ve let go of my hat, for the most part, and embraced my natural salt and pepper shades coming in (or call me ombre, to be fashionable;-) so it’s an easy conversation starter. Most women in RT still go with the hat, though I’ve seen a few wigs, mostly on the older women, or those heading off to work. (Hat’s off to you, ladies! Even if I knew what to do with the rest of my LONG life, right now I consider napping my part-time job, and managing my own and my Dad’s appointments the rest of my shift.  Blessed I can still be doing my own version of extreme self-care and recovery right now, including acupuncture, chiropractic and physical therapy…excelling at other work doesn’t seem possible right now.)

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Then talk usually moves on to lymphedema, which is on my mind these days, and also an obvious ice-breaker as my compression sleeve makes me look like I’ve got a real ‘sleeve’, with pretty tattoos. UCSF had warned me to look for signs: my left arm feeling heavier, or going numb. I noticed it about three weeks after surgery, so I caught it fast, and got a referral to a lymphedema specialist in town. I love my lymph system- it maintains the body’s fluid balance and fights infections. But now, even with only 8 nodes removed, I’ve got lymphedema, so I’m one of the “lucky” 15% after breast cancer/surgery to deal with it.

I was glad my specialist taught me my own lymphatic movement/drainage techniques, and I do them 2x a day.   I also get to wear a padded compression bra, a cross between a medieval lycra torture device and S&M wear for senior citizens. Lymphedema really pisses me off (in case you haven’t noticed), so I’m doing all I can to alleviate my symptoms asap. One day last week I even taught a woman in the waiting room how to do her own lymphatic drainage …her lymphedema was way worse than mine, and her specialist had only recommended spending $70 to have someone else do it once a week. Sheesh!

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My LympheDiva sleeve had better be pretty, since it keeps me about 10 degrees hotter than usual and triggers hot flashes. I’ve even gotten some disapproving looks from those who are far enough away to think the tats are real.   Everything about lymphedema is damn annoying!  It’s not just the gear and daily drainage…it’s mostly the restrictions that get me frustrated:

No flying without gear (and fear of extreme swelling), or for longer than 5 hours at a stretch.

Limit time in high elevations, as my arm may swell.

No hot tubs, (like EVER).

Lower my alcohol intake (No one has been able to sufficiently explain why though).

Wear a sleeve when exercising, as my arm may swell.

Don’t spend long periods in countries with mosquitoes carrying lymphatic filariasis. (microscopic, thread-like worms who live in the human lymph system, found in 73 countries that I’m now supposed to take of my bucket list, including the tropics and sub-tropics of Asia, Africa, the Western Pacific, and parts of the Caribbean and South America. OMG! NO extended exotic, tropical or rugged travel? WTF?) 

No sex(though that’s mostly because of how I feel in the ugly and uncomfortable compression garments, not cuz my sweetie is repelled by them, or me. I know, I’ll get over it. Maybe after I drink some wine and sit in the hot tub and…oh. Wait. I shouldn’t do that……).

No salt. (Ok I can handle everything else but no SALT? Seriously?;-)

So all you who know me well also know my inclination is to resent restrictions like these…especially since I thought radiation would be the end of my cancer treatment, and I could just recover better and brighter. I’m hoping lymphedema isn’t going to affect my long-term future, as immediate care may alleviate symptoms later…sigh.

Of course,  all I want now is to be overlooking some high-elevation South American ruins I’ve just flown 20 hours to see and hiked 14 hours to experience…while soaking in a hot tub and enjoying Pisco sours with a salted-rim. Oh and definitely NOT wearing my ugly gear!   (Thank goodness I’ve got my sweetie, who will make low elevation, local travel and even a low salt diet fun…at least before the gear goes on!!)

TMI, once again, I know. Thanks for putting up with my ongoing journey!

Dee: Times, They are a Changin’

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Dee:  Times, They are a Changin’

Happy Spring-it’s been 6 weeks since my last blog- this is a long one, and I have another one coming soon, so if you want to catch up, get comfy!

Post-surgery I just retreated. It was pretty overwhelming, especially with my dad and mom in law needing care, and not enough hands to go around.  I was glad surgery was over, and only 8 lymph nodes removed, and only 3 of them with trace amounts of cancer. It felt like the hardest part was over, and it was time to move forward, regain some of my life back…and get boobs!

Reconstruction has been both an amazing process to watch, and pretty fun, to be honest. I know that’s not the case for many women, so I’m thankful for that. Skin and nipple-sparing surgery means I left my double MX with about 150 CCs of fluid in each implant, ad I actually had some boobs…The first time I was unwrapped, 1 week post-surgery, I was too scared to look…Kev had to say “Wow, Dee it’s OK, you look like yourself, just a smaller size, open your eyes!”.  That was a huge relief, on different levels.  (He’s not afraid to look at me! I don’t have a huge scar! Maybe this will all turn out alright after all!)

Since then, reconstruction consisted of quick visits up to Plastics, at UCSF. I happen to have The Man, and my plastic surgeon’s a bit shy, a sweet guy with a very gentle touch, who seemed to look at my boobs more than my face. In this case, totally justified and welcomed!

Right now, I have expenders in, which can be filled with additional saline to stretch my skin and increase my bust;-).  First time, a long needle was inserted right over my nipple into the bag and 30CCs added, which I didn’t feel ( I was still on good drugs 1 week after MX).  Second time, about three weeks post-surgery, I got my drains removed ( a very odd moment, like a snake slithering out of my armpit)  and another 100CCs added to each side- this time, I FELT it. Like a small dog asleep on my chest all the time, and I had to push the puppy with every breath. (How much do those teacup chihuahuas weigh? I bet about 200 CCs!)  This feeling lasted about 10 days…so I rescheduled my next expansion appt for the following week, to give me a little breathing room, pun intended. I was feeling better at this point, my scabs and bruises over my nipples were almost healed, and I didn’t need to wear a bandage/bra anymore.  I slathered Sweet Herb medicinal’s Healing salve on multiple times a day, and i know that helped with the minimal scarring…(That and my World Class Surgeons, anyway;-). 

So the next expansion appt was with The Man himself- even though these appts last about 8 minutes and can clearly be taken care of by the quick-fingeed nurse instead of the busy and probably expensive Man. I asked him if he usually did expansions, and he said “Well, no, it’s been a while, but your nurse happens to be off today..I do know how to do it though, don’t worry!”  OMG. I reassured him that I figured he was capable, I just didn’t want to take his valuable time… and wow. What a difference! He offered me a numbing shot (that was a first) and with his light fingers I didn’t even feel that, much less another 100 CCs. The expansion went in so slow and easy I didn’t really have the same intensity as before. ( No teacup puppies this time, more like a perched parakeet, though I still felt pressure for another two weeks). 

The fourth expansion, by the nurse (and a numbing shot, by request;-), brought me to 565CCs. I think Kev was a little disappointed, since we were expecting another 100CCs…after all, a great rack was our shared Booby Prize for getting through f’ing cancer and this last year from hell.  The nurse said i had hit my maximum though…and I’m OK with it.

It’s been fun, actually- I can’t lie. I’ve been able to toss my bra and go commando- and I feel so much more comfortable, and my clothes look better on me. Those bra-burning gals in the 70’s had more than politics and equality on their agenda- it’s SO much more comfortable! Finally, some good comes out of all this…  I start dreaming about new bikini tops and strapless dresses… We make quality time with old friends, and deepen ties with newer ones, and we take Spring Break off and soak in some staycation fun.

Then we get UCSF’s recommendation for radiation.

One of the many good reasons I opted for a double MX was the lowered potential for RT…with a lumpectomy, it’s a guarantee. We waited 3 weeks for the UCSF tumor board to confer over my pathology results. I gave it up to my brilliant team, but I was praying HARD for different news. Even though I trust them, I wanted to make sure this wasn’t a “can’t hurt, might as well” type of recommendation…I was still pushing back until they informed me there was a 35% chance of reoccurrence without RT, and only 5% with radiation.

Well, shit.

We get a referral for the best RT doc in Santa Cruz…since radiation therapy is EVERY. WEEKDAY. FOR. 35. DAYS. it’s not feasible to do my treatment at UCSF…though my body mapping appointment with Dr. RT sure made me want to make that happen instead. I’ve just gotten used to the way I’m treated at UCSF, and I don’t just mean medically.

Let me back it up a second…One of my main concerns about radiation is my left breast will be the one glowing in the dark- and not only do I have heart disease on both sides of my family, the last chemo I received, A/C, is also very hard on my heart. in fact, my heart rate finally JUST came down to normal from the 130’s tempo I was keeping since January. I didn’t want anything else to compromise my heart…and if the lymph nodes in the middle of my chest are irradiated, there’s a high chance of a ‘heart incident’ within 10 years.

WITHIN 10 YEARS.

My mom never fully recovered from her open-heart surgery, and it was a horrible, scary experience for our whole family. I’m 46, and WAY too fricking young to be worried about a heart attack in my mid-50’s. Damn, I want be checking bucket-list items off in my 50’s, not kicking the bucket!

But I trust my team at UCSF, and those numbers don’t lie. Since my tumor was at the 12 o’clock position, directly over my nipple, there was a discussion about where the radiation would be needed- at the site of the lymph node removal, and the tumor site, obviously, but…do we attack the inner mammary nodes over my heart?

Well, my amazing World Class Surgeon and Oncologist thought not, but also said they trusted my SC RT doc…and it would be her show, not theirs.

Kev comes with me to the first RT prep appt… and my thorough, well-researched sweetie asked all the right questions. I had done my reading and was well prepared for the process itself, but was freaking out about the possibility of being pushed into RT that would give me further heart complications “because that’s how we do it here’. I needed my bulldog!

We left  the appt feeling relieved and heard, and we both liked our RT doc very much, and trusted her, even more so after we agree I should most likely only get RT where it’s needed, and it’s probably not needed over my heart. Then I went in alone, the following week, for a ‘mapping’ appt, which I thought would be no big deal, and one I could handle without a bulldog or a honeybee. I am  usually a very independent gal, and I was enjoying being self-sufficient and giving Kev a little precious time to himself…(bet you know where this is going, huh?)

So I’m lying in a cold slab of a table with my shirt off, getting tattooed. (Oh yeah, one of the other reasons I was hoping to avoid radiation... they’re just three small blue dots on my breast and sternum, but they can be seen when I’m in a tank top, and it’s just another insult to the injury of my boobs, ya know?) The techs were all very nice, of course, but I was in a vulnerable place all of a sudden, especially when I was confirming that I was NOT getting the lymph nodes over my heart irradiated, and they answered that they map the whole area, and then the Doc decides. OK, fair enough.  She’s already seen enough data to make her decision, the same data UCSF shared from the PET CT, 4 fancy MRI’s and CAT scan I’ve already had during this adventure, so I figure this new ‘mapping’ (with very rudimentary equipment) won’t change our previous understanding made in her office.

Then Dr RT stops in…I ask her again, about radiating the lymph nodes over my heart…I’m nervous, dammit, and I already feel pissed about the need for RT at all, without the added risk of treatment. She just looks down at me, half naked on the table, and says, “I haven’t decided yet”.

 Wha–aat?

So in the seven months I’ve been treated at UCSF, not ONE person- doctor, surgeon, nurse, desk jockey – NO-ONE has spoken to me as if I were not the one making the ultimate decisions about my care. They were just giving me all the information available, and then trusted and supported ME in my decision-making, because I am the ultimate healer, not them.

In four words, my new doc had just smashed the confidence and respect I had been building for her and for radiation treatment in Santa Cruz. All I could say was “Well, I want to be a part of making that decision, before radiation starts!” and then I had to shut up, or start crying.

So instead of coming with me, and probably fixing the situation right there, Kev gets an emotional phone call…and we start throwing around crazy ideas to manage daily radiation treatments in san Francisco instead….

About two hours later, my Santa Cruz RT doc calls me, and says, “WE only need radiation treatment on the tumor site and lymph nodes, so your breast but not over your heart.”

I’m sure she could see my shock at the appt and heard my immediate defensive self-advocacy. I know from all my years as a doula, it’s really hard to be the one advocating for yourself in the midst of what you’re going through physically and emotionally- another way labor and cancer treatment relate. Of course birthing mamas and cancer warriors can and DO advocate for themselves during the process…but it sure is a blessing when we know we have a honeybee and a bulldog to take care of us so we don’t have to do so.

Had my second day of radiation today, 7:15 am every weekday through May 18th.

So far, so good…

Thanks for hanging in there, lovely readers. There’s more to the story, and some more challenges to deal with…sigh. I’ve got a lot of emotions going, and it will take another blog post to unleash, ahh, ahem sorry, unfold those feelings into a coherent post. It’s been a long one already though so…

Stay Tuned;-)

Kev #21: Some Quick–and Mostly Positive–Updates… :-)

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Dear Family:

I said I would check back in, so here I am!  Updates are flowing…

Deidre:

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My beloved has come to terms with the fact that she should do radiation therapy, and so that will be moving ahead immediately after her reconstruction expansions have been completed.  This gives Dee the best shot at never having to go through a damned battle with cancer again, so I am all in favor of it (of course, I’m not the one who has to go through radiation, though, so easy for me to say, right???).  We trust Dee’s team up at UCSF implicitly.  They have saved my sweetie’s life and been kind, thoughtful, solicitous, and graciously optimistic throughout this entire horrific process.  Dr. Esserman, Dr. Park, Dr. Foster, Dr. Fowble, and the entire rest of the team at UCSF have been truly superior, exceeding our highest expectations (and those of you who know me, know that I have very high expectations indeed).

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Deidre’s Dad, Don:

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Don is back home with us now.  He is doing pretty well, all things considered; however, he is limited to one substantive activity per day.  Unfortunately, Don began smoking again almost as soon as he walked out of the skilled nursing facility.  Man, that is a nasty and pernicious habit!!!!!  The grip that cigarettes have on Don is staggering to witness.  It is also very sad and difficult for both Dee and me.  However, Don is an adult capable of making his own choices, and he has made his.  Now, we just wait…

My Mom:

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Antoinette is getting antsy as hell to leave her skilled nursing facility.  We have a follow-up visit with her surgeon on Monday that will determine exactly when she will be released.  Mom’s infection seems to be clearing up nicely, thank goodness, and she is roaring to get back to her regular life.  I’m sure she’ll be seeing many of you in person soon, just as I’ll bet she’s been keeping in touch via Facebook.

Buddy the Wonder Dog:

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Buddy underwent surgery last Tuesday, and his pathology report reached us by the end of the week.  Miracles do happen!!!!!  Buddy does NOT have cancer!!!!!  His growth was something called a hystiocytoma.  It was ugly and uncomfortable, but benign.  Hopefully the surgery got it all.  Bottom line, though, is that our boy is all good…  🙂

Much gratitude to all of you for your ongoing love, care, and support.  Take good care.  Have a tremendous weekend…

Love,

Kev

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