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John Christopher Fiore, 55, of San Luis Obispo, passed away at home with family on Sunday, November 14th, 2010. John was born in Providence, Rhode Island, but lived most of his life on the central coast of California after having earned an MBA from California Polytechnic State University in San Luis Obispo. John worked in the local software industry but his life took an unexpected turn when he was diagnosed with leukemia in early 2005.
A gifted writer, John chose to turn what would have been a devastating experience for most of us into a positive force in his life and the lives of others when he decided to chronicle his cancer journey publicly in the form of this blog, “Holy Cow, I Have Leukemia!” His tremendous will and irreverent sense of humor, in the face of the unrelenting progress of his disease, informed, entertained, and inspired all who read his story.
Just months after bone marrow transplant in 2008, John finished the Santa Barbara half-marathon with the Central Coast Team in Training to raise funds for the Leukemia Lymphoma Society. He was a “cancer warrior” who was proudly victorious in battle after battle, and only surrendered when he decided the disease had taken too much of him.
John was known for his generous heart and quick wit. He was a friend and mentor to many who knew him and worked with him. An enthusiastic wordsmith, he solved the Daily Jumble in seconds, beat most of us handily at Scrabble, and loved a good verbal spar. He was a poet and raconteur who left us a legacy of his writing and poetry. John loved games, be it a good game of backgammon, or cribbage with his friend, Michael, family games at holidays, or a hand of poker with friends or strangers. A natural athlete, he coached baseball and basketball for his boys. He enjoyed surfing and golfing, and he pitched a mean softball. John found comfort and spirituality in the majesty of nature and spent many happy days traveling, camping, hiking, and backpacking. He loved his family and raised two exceptional sons, of whom he was extremely proud.
John was preceded in death by his parents, Frank and Grace Fiore, of Rhode Island. He is survived by his wife, Dana, and his sons, John and Michael Fiore, all of San Luis Obispo; his brother, Frank Fiore and wife, Cheryl, of New Mexico; his sisters, Joanna Chapin and husband, Ted, of New York; Leslie Coletta and husband, Robert, of Rhode Island; his donor sister, Lisa Fiore Nunez and husband, Manuel, of North Carolina; and an extended “karass” that loved him for the unique man that he was.
A reception and memorial service will be held in his honor on Sunday, December 5th, beginning at 2pm at Rose’s Landing on the Embarcadero in Morro Bay. In lieu of flowers, please donate to:
The John C. Fiore Memorial Scholarship Fund
at SLOHS
1499 San Luis Drive
San Luis Obispo, CA 93401
In his own words, John was "honey and cinnamon and mustard" and "the flash of lightning you didn’t see, except when the room lit up.” We will miss your light in the room, John, but will hold it, always, in our hearts.
Here is a link to some photos we are collecting. Hope it will bring mostly smiles.
http://s1181.photobucket.com/albums/x424/dfiore6/John%20Memorial%20Slideshow/?albumview=slideshow
You can also sign John's guestbook and post photos at: http://www.legacy.com/guestbook/sanluisobispo/guestbook.aspx?n=john-fiore&pid=146785997&cid=view
Dear Friends and Family,
John passed away peacefully early this morning.
I have so much to say, but can't find the words now, so I will just post his. I'm not sure exactly when he wrote this. I found it this afternoon as I was beginning to feel the impact of the huge, empty space that his big personality once filled. It gave me comfort.
Be like water
I would like to be like water,
travel all around, go underground,
rise to the sky, see the world,
swim with the dolphins and whales,
save a thirsty soul,
pour off a sweating body,
fly to the sky,
dance with lightning and jam with thunder,
then drop like a rock in a hail of joy,
cover the earth with the
white pureness of my spirit,
feed the flowers and the trees,
carry the traveler,
never wanting, just being.
John woke up groggy Wednesday morning but was focused on the promise we made him to get him down to see our boy, Mikey, in the PCPA production of Peter Pan. He kept trying to get up, and wanted to get going, hours before the show started. I was having some hesitation about it because he seemed so tired, but I could see how much it meant to him. So son John, and good friend, Mike, bundled him into the wheelchair and off we went.
I was in tears even before Wendy, Michael, and John left the nursery. It was the "happy thoughts" that got me going and the flying did me in. Our own Michael was terrific as Slightly Soiled, one of the lost boys, his hair wild and tousled before Wendy arrives, and combed neatly in the scene after she agrees to be "mother" to the lost boys. It is really a wonderful production and the story has special meaning on many levels. I was watching John closely and could see how he was struggling to even sit up, but now and then he beamed a smile and clapped his hands. We had to leave after the first act because I could see he was fading fast, but our mission was accomplished.
As soon as we got home, John wanted to go to bed, and the next day marked a dramatic change in his activity level. He spent most of the day in bed and only made a few attempts to speak. By last night, he was mostly sleeping and when he was awake, he was restless and showing the first signs of serious pain.
Hospice nurses responded quickly, and family and friends gathered last night to make sure John knew he was surrounded with love. He has been sleeping all day today. His pain is managed but he has been unable to even open his eyes. He seems peaceful but his breathing is labored at times. He has stopped eating and drinking and is unable to swallow. We have had a quiet afternoon together which was welcome after so much activity over the last couple of weeks. We listened to music, I talked to him, and read some of his poetry. Mostly I just held his hand and listened to him breathe.
He wrote these poems last month but didn't show them to me. I found them as I was looking through some of his other poems. Here they are.
Angel
Would that we could
have kept that angel,
the one that sat on our shoulders
as we wobbled through that toddler age,
missing table corners and open drawers
by whiskers, angel fingers taking the hits
for our soft little baby heads.
We zigged and zagged, the road
a mine field, trouble at every turn,
and yet here we are.
But now, the angel is gone,
and I miss mine at every fork,
every misstepped road.
Who I Was
There was a time,
in my youth,
when I was the flash of lightning you didn’t see,
except that the room lit up.
I was the scent of pine trees and sage
riding in on a hot wind from the south.
You smelled it and it was sweet but vague.
I was the river that you could not ford,
and the forest of Bishop pine and redwoods,
the paw prints in the forest by the stream.
I was all the honey and cinnamon and mustard,
fresia and roses and periwinkle, cats and dogs and birds,
but of course they all were consumed.
Now I am here, stripped of my nature,
just pain and bleeding and heartache,
reaching out to my death with
weak and mangled hands,
not wanting to touch it,
yet reaching and reaching.
I believe
If I could believe in
Heaven and Hell,
I would be very scared to die.
If God is within me,
all knowing, all powerful, all present,
incomprehensible,
should God be feared?
I was raised to believe
my soul will burn in eternal damnation,
what a thing to believe, I cannot do it.
I choose to believe
I will tour the universe, God within me,
freed of my mortal bounds.
John had often talked about "touring the universe" and not long ago I asked him if he was afraid of death. He said he wasn't, without hesitation. I think he believes as Peter Pan does, that "To die, will be an awfully big adventure."
John used to joke about throwing himself a wake while he was still here so that he could enjoy the party and all the stories and nice things people would say about him. In a way, the past few days have been a little like that idea. Though he has had mostly frustrating and difficult days and nights, there have also been some moments that were beautiful and happy. Family and friends have been stopping by, telling stories, bringing favorite foods, and just being present, making John the center of attention, which, as you all know, he loves.
Here are some highlights:
Having brother Frank, and donor sister, Lisa, and their spouses here, loving their brother, John.
A visit from friends with a brand new baby. John held Sierra in his lap and they smiled dreamily at each other.
Several trips in the wheelchair, over to the park behind our house with the guys, to throw the ball for Woody on delightfully warm fall days.
Sharing Danish pancakes with family and friends gathered round our dining table.
Reconnecting with old friends. The beautiful side of crisis is the way that it brings people together.
Watching home movies of happier times. Little boys, doing little boy things. Where did the time go?
A sing-a-long with Chris O'Connell, who indulged us with old favorites and had John clapping and smiling, and all of us laughing and crying.
And cuddled up, watching the rain, quiet and peaceful, and lovely, even if tears were flowing.
It's still very difficult to understand John, increasingly so. In fact, he has resorted to a thumbs up or thumbs down to answer yes or no questions, and to pointing to indicate he wants something, or wants to be moved. Even though he is suffering what most of us would consider worse humiliation in his weakened condition, I think the inability to communicate may be what is hardest for him.
He is able to stand briefly, with help, so that we can get him from the bed to the wheelchair, etc. but has lost much of his fine and large motor coordination. He is most alert in the late morning but tires easily. He seems to enjoy having friends stop by for short visits, and in spite of all the challenges he is facing physically, is able to let his spirit shine through.
I have so many people to thank for thoughts and prayers, and special thanks to so many who have taken time out of their busy lives to make sure we are OK. To Mike and Jack for making John laugh, to Jen, Lisa, Jan, and Missy for wonderful dinners and treats, neighbors Bruce and Pat, Craig and Janice, Leslie, Patrick and Sue, also for dinners and treats, and making sure Woody gets his walks, to Ellen for providing a much needed break for me on Saturday morning, to Leti, (I suspect it's you that has been leaving flowers on my doorstep), to Daria and Gloria for shoulders to cry on, to my dear sisters Lia and Stacy, don't know what I'd do without them, to my son, John, who has put his life on hold and is here for both his dad and me, and to my teaching partner, Kim, and substitute, Penny, for holding down the fort while I am gone. I'm sure I have forgotten to mention some of you. Forgive me. I am feeling a little muddled myself and kind of running on empty, but know that your kindness is appreciated.
To all of you who have posted or emailed your kind thoughts about John and me, thank you. I read them to him daily. To Pat, and Mac and other faithfuls at the blogbar, thanks for following the yellowbrickroad. To manitooboo, Mo, and to whoever it was that posted that beautiful poem by Wendell Berry, thank you. Such peaceful imagery.
Here is a passage from one of my favorite stories, The Velveteen Rabbit. It just seems to fit.
"What is REAL?" asked the Rabbit one day, when they were lying side by side...
"Real isn't how you are made," said the Skin Horse. "It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real."
"Does it hurt?" asked the Rabbit.
"Sometimes," said the Skin Horse, for he was always truthful. "When you are Real you don't mind being hurt."
"Does it happen all at once," he asked, "or bit by bit?"
"It doesn't happen all at once," said the Skin Horse. "You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in your joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand."
I know you all understand. Love, Dana
Dear Friends and Family,
We brought John home today. He is resting comfortably behind me as I write this. We have a hospital bed downstairs in our family room so that he can be as much a part of things as he is able to. We had a little bit of a rough start this morning transporting him, and maneuvering the wheel chair and the other equipment we're learning to use. There were lots of people here trying to help, and he seemed to get very frustrated at the confusion and at not being able to express his needs. But later, he and I enjoyed some quiet time alone together out on our back patio. He sat in the wheelchair and I sat across from him, holding his hands. It was an unseasonably warm fall afternoon. The late afternoon, golden light played on the hill behind our house and made the leaves, already beautiful in shades of red and yellow, seem to glow. Woody was at his feet, the birds were singing, a warm, gentle breeze was blowing, and there was no need to say much at all.
My dear sister, Stacy, was here helping all day, and running out to get all the things we needed that I hadn't thought of. We have a professional caregiver here helping too. She will stay with me at least until our son, John, gets back here. Dr. M recommended we have two people here at all times. My sisters will be providing respite for us, and Hospice met with us today to get their wonderful support started as well.
John has been taken off of curative care. No more chemo. The doctors say it would only make him sicker now. He will be receiving care from the trained staff at Hospice to make him as comfortable as possible here at home. He is still having great difficulty talking and with motor function. He cannot stand or even move his legs without assistance. He is eating and drinking very little, and sleeping quite a lot.
I had some good friends stop by today to help out too. Thank you, Bruce, for helping get John into the wheelchair while I was napping, and for taking Woody out for a spin. Manitooboo Lisa, who is in town caring for her aging mother brought me a delicious dinner, and she and Gloria perked John up quite a bit. He was joking with them, and he seemed to enjoy his own jokes, even if we didn't always quite get them.
John's brother, Frank, and his wife are here, as are his donor sister, Lisa, and her husband. They enjoyed some down time today and explored a bit of our beautiful central coast with a visit to Hearst Castle. The Fiore family has had too much sorrow this fall, with the loss of their mother just last month, so I'm glad they were able to get away for a bit.
I thought I was mentally prepared for this, but it is clear I'm not. After five years of Superman, I think this caught us both by surprise. Thank you all for your warm wishes and kind words. I will pass them on to John.
With love,
Dana
