Remembering Joy

[Snootch]

Dear HER2 Support Family,

This is Luca, Joy's fiance, checking in. It is very difficult to come here under these circumstances, but I feel that there are a number of meaningful things to share with you in remembering and honoring Joy. I just hope that I can write something intelligible! So here goes... As in Love, with death there are often no words to convey the experience, but I will try anyway. Please forgive me if I state the obvious at times in this post, but part of the grieving process for me has been to let friends and family know the beautiful and inspiring things she had to say about them. I have found that even though I know very well that she loved me, it has been very healing to hear that from others. I hope the same is true for those here as well.

There is an abundance of memorable thoughts and moments that Joy gave those who knew her; some sacred, some insightful, others touching, and often silly and funny. Unlike many people I've known, Joy would rarely anything bad about anyone, no matter how justifiably angry or frustrated she might be with them. When she did vent, she would often temper her words with something good about the person and/or find something positive in the interaction. She consistently looked for the good in people and in humanity. She strove to be the change that she wanted to see in the world. She was a genuinely good natured, big hearted woman who cared deeply for the people around her. These are a few of the many characteristics that made her the most inspirational, remarkable and lovable human being that I've ever known.

If you're wondering about our journey together, I was with Joy until her last moments. There were hard times along the way as you can imagine, largely due to "external stresses" including but not limited to treatment "side effects" and the disease progressing, but no regrets. We remained very close and loving to each other to the end. We did not fight, ever. That was a new level of relationship for both of us. I think it was because we simply had too much love, friendship and respect for each other to allow anything like that to manifest. Starting late last winter she would tell me that she loved me, wanted me to be happy, and while it would make her sad she would understand if I needed to leave the relationship. I took this very seriously, and was very clear in saying that I chose each day to be with her, engagement and plans to wed or not, and likewise she chose each day to be with me. Eventually, we were able to be a bit more light hearted and playful when this feeling came up. I would succeed in getting her to smile, saying things like "You think that losing your hair is going to scare me off? You're not going to get rid of me that easily!". I think I know where she was coming from, feelings of guilt at burdening others, not deserving love, wanting the ones we love to be happy even if that means we're not in the picture with them. What I do know for sure is that we moved into new emotional territory late this past summer. She continued to be so sweet and gentle anytime she had these feelings, but we would just talk them out without worry about commitment or where we stood with each other. I think sometimes she was kind of amazed, expressing gratitude, almost not believing I was still right there for her, loving her. We were fortunate to have had our time together, although too brief. And despite the unfortunate shadow that BC cast, we made the most of our time together, whether alone or with friends and family.

I was and am honored to be her friend, partner and nurse/caregiver along what turned out to be this last stretch of her life's journey. She was a friend and partner to me in a way that was so loving, generous, and tangible that I have nothing with which to compare in my life experience. I would do it all over again. I held her hand during the good times, on walks and at shows, and I held her hand during treatment, at doctor's appointments, at the hospital, and in the end during hospice at home. Holding hands had special meaning for us; in conversation or in action we would often refer to our deeply rooted connection and lifelong bond in this way. These are early days yet, with no short supply of intense emotions and unfamiliar thoughts, but through all the grief and sorrow at her passing I feel that we are still holding hands.

This community - you gals and guys - meant so much to her. Please know that her absence from posting here was not from lack of caring, but from the limitations imposed on her by treatment and this despicable disease. She drew inspiration, hope and valuable information from you. You know that she would lend support and hope for recovery during hard times, but she would also worry and truly grieve anytime there was bad news here. I'm aware that a number of others Joy connected with here have gotten their wings since she was last present. If her situation could have been different she would have been there to mark these tragic passings and join in supporting the survivors. Also, a special thank you to those who posted comments on the Rest Haven site. It means a lot to me and I know it means a lot to her friends and family. Joy greatly treasured and was deeply grateful for her relationships here and in the offline world. I know that she would want you all to continue thriving, fighting, researching, sharing, caring, hoping, and supporting each other on this journey.

Joy fought until the very end, she was so brave and so strong all along the way it was quite literally impressive and amazing. As far as I could tell, she held on to hope until the very end, too. A week before she passed I offered to read to her, which she loved. I had brought a number of books that I thought she would enjoy. She asked me to find 'Remarkable Recovery' on her bookshelves. I read her most of that book over the next 24 hours, and from that and our discussions that followed, I truly understood how much hope was a part of her very being. I love fullofbeans' quote from the Dalai Lama: "Under no circumstances should you lose hope". Also, I read this quote years ago, but it took on new meaning through the experience of being close to Joy: "Courage is not the absence of fear, but rather the judgment that something else is more important than fear". - Ambrose Redmoon. I shared her fears and did my best to match her courage, while trying to shield her from my own worry and sadness, and remained focused on her as we supported each other through good times and bad. Now I think it's time for a shift towards more light hearted remembrance!

Fun and playfulness were a big part of how Joy lived and loved life. She laughed a lot, and we delighted in making each other crack up. She would leave little love notes in her girls' lunches, or "hide" them throughout the house as she did for me on my birthday. Her big, beautiful blue eyes sparkling, she would watch kids and animals frolicking and playing. Silly cat photos and videos were a perennial hit at her house, as were the real life antics and peculiarities of her two cats. She and the girls would often lovingly recount hysterically funny moments from their childhood. Joy did Mick Jagger impressions that make me laugh out loud when I think of her strutting around, lips in a pout, while the Stones play. She loved comedies, from MASH to Mary Tyler Moore, from Spinal Tap to The Office, and practically everything in between. With her amazing memory, she would often quote comedies or in conversation make witty references on the spot. She found mis-spoken words very amusing, including Michael from the office's tenuous grasp of language, e.g. "un-understandable," "protruberance" and "approachabler". There are dozens and dozens of fanciful, funny words and phrases that Joy would use in every day conversation. My handle here on the site is one of those words: snootch, snootchie or snootchie pants were all terms of endearment used for anyone who showed thoughtfulness, tenderness, love and caring for her or others. I take great comfort and pleasure in having been called by these affectionate names many times during our time together. With her friends' help, I am compiling a collection of these terms with 'translations' and definitions. If there is interest, I would be glad to post it when it's ready.

Children were one of Joys' all time greatest passions and sources of happiness and contentment. Her amazing love of and aptitude with little ones was obvious in her role as educator, daycare provider, parent, and friend. There are numerous accounts of women who chose Joy to be the first person to watch their toddlers for them. You just *knew* that children of any age would be just fine in her care, she naturally inspired confidence. Anytime there were children around, especially babies, Joy would light up and admire them, revel in their play or laughter, and deeply sympathize if there were tears for whatever reason. Her love for her girls was an enduring source of inspiration for her and others, and her chief motivation for fighting and fighting BC. There are no words to describe how much she loved them. She was amazing and loving with my children as well; a common question they would ask as soon as I picked them up from school was "Are we going to see Joy?". One of her nick names was Mama Joy, and it fit her so well. She was *such* a mama to her core, it was something you would see almost immediately upon getting to know her. I love that about her, and I think her big love for children was an important part of why she was a firm believer in peace and non-violence, and always envisioned and hoped for a better world.

Beauty, art of all kinds and color filled her house and graced her clothes. Of all the arts, I would say that Joy had the most profound connection to, and love of, music. That is something that we found we shared right away. We would listen to each other's collections, put together mixed CDs for each other, and make a point of going out to see live music, which was our favorite way to experience it. One of our first dates was going to see The Raconteurs in Denver on April 28th, 2008. Joy had told me she was a big fan of Jack White. So after a lunch date on the 26th she allowed me to gently convince her [carpe diem style] that since she wanted to see him playing with the Racs, she should make it happen. A few hours later I got a text from her saying she got the tickets, and did I want to go with her? It was a magical night that we happily went back to many times. With her curiosity and penchant for research and just knowing things, she was an amazing resource for lyrics [and misheard lyrics], biographical information on numerous bluesmen and rock n' rollers, back stories on songs and recording sessions, and more. I loved discussing lyrics with her. Especially when it came to U2, where the words can often have both a spiritual and secular meaning, she would amaze me with how brilliantly she interpreted them. I feel that Joy enchantingly embodied the spirit of rock n' roll with her love of good times, positive energy, playfulness, rebelliousness, sauciness, independence, and good natured naughtiness. It's worth mentioning just a few more of her favorite bands - Pearl Jam, The White Stripes, Dave Matthews Band, The Rolling Stones, Led Zeppelin, The Doors, The Grateful Dead, Tom Petty, The Police and David Bowie. There are tons more - but perhaps for another time.

There are many, many more things about Joy that I would love to share, but it's impossible to capture her bright, loving spirit even with all the time and words in the world. So, at this point I'd like to let the thoughts, words and music of others contribute to her memory. The quotes below are all quotes she treasured and shared with me and others - except for the last one from Erica Jong, which I was moved to add just now as I double checked the wording of another quote. The link below that is to her playlist of funeral songs that she shared with me early on in our relationship, if you'd like to listen. Following that are the lyrics to those same songs - plus the lyrics to We're Going to be Friends, AKA 'our song'. These songs, and many others, were played at the Celebration of Life we had for her on January 3rd. A more formal memorial gathering is planned for the Spring, outdoors, date TBD.

Joy once told her best friend that when she got her wings, she didn't want it all to be too serious, and asked her to raise a Lemon Drop [made just the way she liked them with Ketel One vodka, real lemon juice, a sugar rim and a twist, served up] with her friends and listen to some good tunes. In that spirit, I join you in remembering our Joy and wish you all the very, very best.

With Gratitude and Love,

Luca


We're very lucky in the band in that we have two visionaries, David and Nigel, they're like poets, like Shelley and Byron. They're two distinct types of visionaries, it's like fire and ice, basically. I feel my role in the band is to be somewhere in the middle of that, kind of like lukewarm water. - Derek Smalls, This is Spinal Tap

Okay, I got everybody smalls, but remember there's free refills, so small is really a large with a little extra walking. - Joy, My Name Is Earl (at her wedding rehearsal dinner)

The mystery of love is greater than the mystery of death. — Oscar Wilde

We have enough people who tell it like it is - now we could use a few who tell it like it can be. - Robert Orben

Impossible is a big word thrown around by small men who find it easier to live in the world they've been given than to explore the power they have to change it. Impossible is an opinion not a fact. Impossible isn't a declaration it's a dare. Impossible is potential. Impossible is temporary. Impossible is nothing. - David Beckham

After silence, that which comes nearest to expressing the inexpressible is music. - Aldous Huxley

Ah, music. A magic beyond all we do here! - J. K. Rowling

Love is everything it's cracked up to be. That's why people are so cynical about it. It really is worth fighting for, being brave for, risking everything for. - Erica Jong

The trick is not how much pain you feel - but how much joy you feel. - Erica Jong


http://www.playlist.com/playlist/8592281867

GIVEN TO FLY
Pearl Jam (McCready/Vedder)

He could’ve tuned in, tuned in
But he tuned out
A bad time, nothing could save him
Alone in a corridor, waiting, locked out
He got up outta there, ran for hundreds of miles
He made it to the ocean, had a smoke in a tree
The wind rose up, set him down on his knee

A wave came crashing like a fist to the jaw
Delivered him wings, "Hey, look at him now"
Arms wide open with the sea as his floor
Oh, power, oh

He's.. flying
Whole…
High.. wide, oh

He floated back down 'cause he wanted to share
His key to the locks on the chains he saw everywhere
But first he was stripped and then he was stabbed
By faceless men, well, f***ers
He still stands

And he still gives his love, he just gives it away
The love he receives is the love that is saved
And sometimes is seen a strange spot in the sky
A human being that was given to fly

High.. flying
Oh, oh
High.. flying
Oh, oh
He’s…flying
Oh, oh


SHINE A LIGHT
The Rolling Stones(M. Jagger/K. Richards)

Saw you stretched out in Room Ten O Nine
With a smile on your face and a tear right in your eye.
Oh, couldn't see to get a line on you, my sweet honey lover

Berber jewelry jangling down the street,
Making bloodshot eyes at every woman that you meet.
Could not seem to get a high on you, my sweet honey love.

May the good Lord shine a light on you,
Make every song your favorite tune.
May the good Lord shine a light on you,
Warm like the evening sun.

When you're drunk in the alley, baby, with your clothes all torn
And your late night friends leave you in the cold gray dawn.
Just seemed too many flies on you, I just can't brush them off.

Angels beating all their wings in time,
With smiles on their faces and a gleam right in their eyes.
Whoa, thought I heard one sigh for you,
Come on up, come on up, now, come on up now.

May the good Lord shine a light on you,
Make every song you sing your favorite tune.
May the good Lord shine a light on you,
Warm like the evening sun.


RIPPLE
The Grateful Dead(J. Garcia, R. Hunter)

If my words did glow with the gold of sunshine
And my tunes were played on the harp unstrung,
Would you hear my voice come thru the music,
Would you hold it near as if it were your own?

It's a hand-me-down, the thoughts are broken,
Perhaps they're better left unsung.
I don't know, don't really care
Let there be songs to fill the air.

Ripple in still water,
When there is no pebble tossed,
Nor wind to blow.

Reach out your hand if your cup be empty,
If your cup is full may it be again,
Let it be known there is a fountain,
That was not made by the hands of men.

There is a road, no simple highway,
Between the dawn and the dark of night,
And if you go no one may follow,
That path is for your steps alone.

Ripple in still water,
When there is no pebble tossed,
Nor wind to blow.

You who choose to lead must follow
But if you fall you fall alone,
If you should stand then who's to guide you?
If I knew the way I would take you home.

La dee da da da, la da da da da, da da da, da da, da da da da da
La da da da, la da da, da da, la da da da, la da, da da.


ONE TREE HILL
(U2)

We turn away to face the cold, enduring chill
As the day begs the night for mercy, love.

A sun so bright it leaves no shadows
Only scars carved into stone on the face of earth.

The moon is up and over One Tree Hill
We see the sun go down in your eyes.

You run like a river on to the sea
You run like a river runs to the sea.

And in the world, a heart of darkness, a fire-zone
Where poets speak their heart then bleed for it

Jara sang, his song a weapon in the hands of love.
You know his blood still cries from the ground.

It runs like a river runs to the sea.
It runs like a river to the sea.

I don't believe in painted roses or bleeding hearts
While bullets rape the night of the merciful.

I'll see you again when the stars fall from the sky
And the moon has turned red over One Tree Hill.

We run like a river runs to the sea
We run like a river to the sea.

And when it's rainin', rainin' hard
That's when the rain will break a heart.

Rainin', rainin' in your heart
Rainin' in your heart.
Rainin', rain into your heart
Rainin', rainin', rainin'
Rain into your heart.
Rainin', ooh, rain in your heart, yeah.
Feel it.

Oh great ocean
Oh great sea
Run to the ocean
Run to the sea.


OVER THE RAINBOW/WHAT A WONDERFUL WORLD
(Harold Arlen, E.Y. Harburg / Bob Thiele as George Douglas, George David Weiss)
(As performed by Israel "Iz" Ka'ano'i Kamakawiwo'ole)

Somewhere over the rainbow
Way up high
And the dreams that you dreamed of
Once in a lullaby ii ii iii
Somewhere over the rainbow
Blue birds fly
And the dreams that you dreamed of
Dreams really do come true ooh ooooh
Someday I'll wish upon a star
Wake up where the clouds are far behind me ee ee eee
Where trouble melts like lemon drops
High above the chimney tops thats where you'll find me oh
Somewhere over the rainbow bluebirds fly
And the dream that you dare to, why, oh why oh why can't I? I iiii

Well I see trees of green and
Red roses too,
I'll watch them bloom for me and you
And I think to myself
What a wonderful world

Well I see skies of blue and I see clouds of white
And the brightness of day
I like the dark and I think to myself
What a wonderful world

The colors of the rainbow so pretty in the sky
Are also on the faces of people passing by
I see friends shaking hands
Saying, "How do you do?"
They're really saying, I...I love you

I hear babies cry and I watch them grow,
They'll learn much more
Than we'll know
And I think to myself
What a wonderful world - woohoorld

Someday I'll wish upon a star,
Wake up where the clouds are far behind me
Where trouble melts like lemon drops
High above the chimney top that's where you'll find me
Oh, Somewhere over the rainbow way up high
And the dream that you dare to, why, oh why can't I? I-iiii?

------------------------------------------------------------

'Bonus Track' Lyrics...

WE'RE GOING TO BE FRIENDS
The White Stripes (Jack White)

Fall is here, hear the yell
back to school, ring the bell
brand new shoes, walking blues
climb the fence, books and pens
I can tell that we're going to be friends

Walk with me, Suzy Lee
through the park and by the tree
we will rest upon the ground
and look at all the bugs we found
then safely walk to school
without a sound

Well here we are, no one else
we walked to school all by ourselves
there's dirt on our uniforms
from chasing all the ants and worms
we clean up and now its time to learn

Numbers, letters, learn to spell
nouns, and books, and show and tell
at playtime we will throw the ball
back to class, through the hall
teacher marks our height
against the wall

And we don't notice any time pass
we don't notice anything
we sit side by side in every class
teacher thinks that I sound funny
but she likes the way you sing

Tonight I'll dream while in my bed
when silly thoughts go through my head
about the bugs and alphabet
and when I wake tomorrow I'll bet
that you and I will walk together again
cause I can tell that we're going to be friends

[BonnieR]

Dear Luca ("Snootch"!), what an absolutly moving tribute you shared with us. You are a remarkable man. And you described a beautiful soul. I feel honored to have gotten to know you both so well today. Thank you. God bless.

[Mary Jo]

What a wonderful tribute to Joy. Thank you for that. You both were blessed with a love that was truly special.

God Bless you Luca...

Mary Jo

[Yorkiegirl]

Luca I have tears flwoing doen my cheeks reading these words you have writtem about your BEAUTIFUL Joy.

Thank you so much for hsaring your heart and soul with us about Joy.
What a truly wonderful man you are. God Bless.

[Patty F]

Luca
That was beautiful and very touching. Thank you for sharing with us.

[Hopeful]

Luca,

We all heard so much about you, thank you for letting us see some of what Joy saw in you. It is comforting to know how deeply connected you were, and how much you shared in such a short time. I remember Joy posting, before she met you, that she wanted love in her life, and did we think, as a Stage IV patient, that it was something she should try to do. She got a big push of encouragement from the members here, and I am so glad she did, because it brought her to you. I am glad she had your support through her final journey. Peace be with you and your family as you adjust to your "new normal" without her. You are all in my thoughts.

Hopeful

[Rich66]

Thanks Luca for a bigger window into Joy's life and teh joy you obviously brought her. I loved the fact that in the throes of tremendous adversity, Joy would post a little about it here and follow it with a comment suggesting she was probably making too much fuss about it. I suspect you saw that kind of thing over and over. Please post her observations of wordplay, play on words and play words. I too am a fan of such and would like to get some "from the horse's mouth" I like to think she would laugh at that suggestion and maybe do a horse impression in response

[Rich66]

Thanks Luca for a bigger window into Joy's life and the joy you obviously brought her. I loved the fact that in the throes of tremendous adversity, Joy would post a little about it here and follow it with a comment suggesting she was probably making too much fuss about it. I suspect you saw that kind of thing over and over. Please post her observations of wordplay, play on words and play words. I too am a fan of such and would like to get some "from the horse's mouth" I like to think she would laugh at that suggestion and maybe do a horse impression in response

[schoolteacher]

Thanks Luca. What you posted is beautiful.

Amelia

[Sheila]

Luca
Thank you so much for posting this, about you, about Joy, and all you shared. I too remember when Joy wanted love in her life, but was so afraid, because of her illness, because of her Stage IV mets, because of her children....she had so much to give and yet was so afraid to put herself out there...how would she find the right person....I remeber telling her she might have to kiss a few frogs before she found her prince! But she did find her prince and it was you Luca!
You may not have had each other for a long time, but the time you spent together and the love you shared is timeless, and will last forever.
Please know that we are hear for you, Luca.

[Ceesun]

Luca, I have tears in my eyes and a bit of a heavy heart, but also hope and yes, joy, in reading your beautiful post. May God bless you and Joy and her lovely children. Ceesun

[Tom]

Damn you Luca,

The last time another man made me cry was when my Father, on his death bed, told me not to be sad, as he had gotten a lot of good years out of his now cancer-ridden and beat up body.

I think you just confirmed all of the wonderful feelings we had about the person Joy really was each day. God knows we will miss her. My heart breaks for you and the loss of your sweet Joy. Thank you for your tribute. You remain in our prayers.
Tom

[Shobha]

Laca,

What a beautiful post, you me cry and smile at the same time. Thank you for sharing with us. Peace to Joy, her children and you.

shobha

[MJo]

Thank you. I think you are a miracle that God sent Joy. It's humbling to think that we can all be miracles in someone's life.

[sally]

Luca, Thank you so much for this post. I always thought of Joy so much through this journey. I remember when she met you. I was so happy for her. It sounds like you made the most out of your short time together. The next time I go out I am ordering a Lemon Drop in Joy's memory. That seems like the perfect drink for such a bright and sunny person. Joy was a huge inspiration to me back in 04 along with many other angles that inspired me through the years. I will still think of her often and stay hopeful no matter how tough it gets. Joy will still inspire me through this journey. My thought and prayers are with you and family. Sally

[Paty]

Luca,

I enjoyed your tribute to Joy and I am sure she may have that big smile on her beautiful face reading it from heaven. This tribute really expresses your love for her and your admiration. Thanks for sharing your beautiful feelings with us and thanks for letting us see another part of our beautiful Joy, she must be very proud of you wherever she is. Thanks again Luca, thanks so much.

Paty

[tricia keegan]

Beautiful tribute Luca, thank you for sharing

[Jackie07]

O my Goodness! What a loving tribute! I'm so glad Joy had lived her final days immersed in 'love' - 'And the greatest is love.' Thank you so much for sharing.

[Patb]

You were sent by the angels to be with her. Thanks
for sharing. Joy was an inspiration and her post were
always funny, sad, informative, interesting, questioning
and she always shared her feelings.
patb

[Terri B]

What a remarkable post. I haven't been that moved in a long time. I can see why Joy was so crazy about you! Thank you!