Dear Ones,
John's memorial service on Sunday was a beautiful thing. It really could not have been more perfect. It rained a little, but then the day cleared up and we had a gorgeous view of Morro Bay, right at waterfront, with the sun shining through the clouds and onto the water. It looked like it made a silvery path just to us. (And yes, Cindy, there were pelicans.)
Family friend, Ellen Sheffer, guided us through a beautiful tribute to John. The four speakers we chose, one from family, our brother-in-law, Barry, John's close friend, Mike Beauchemin, John King, from John's software days, but also a surfing, golfing, poker buddy, and Ben Fine, who worked with John at TEC and who was here with his new baby girl the week before John died, were all just wonderful and spoke from the heart. There was a great mix of funny John stories as well as a lot of deep sentiment.
Choir director, Paul Osborne, from the high school was able to pull together a group of current and former students to sing, and they were amazing. Their voices filled the room which was already filled with family and friends from all over.
The highlight for me were our two sons, Mike and John, who were outstanding young men honoring their dad. Young John read his dad's poem, "Be Like Water" beautifully, and Michael sang most beautiful version of "Danny Boy" I have ever heard, and I'm not just saying that because he's my boy. John would have been a puddle of tears, he'd have been so proud. I am hoping to get a link up in the near future of some of the highlights of the service.
I know some of you who were not able to make it, were joining us in spirit from all over the globe. Many said they felt John's presence there. What I know is that there was a warm cocoon of love for a unique, courageous, and loving man who will be missed by many, far more than he could have imagined.
We are still collecting donations to fund the choir and theater departments at the local high school. These provided our family with so many beautiful memories over the years. The fund will also help the student team that runs each year for the Leukemia Lymphoma Society to raise funds for the cure. Your donations are very much appreciated. I think it is a beautiful way to honor John.
Please send your donation to:
The John C. Fiore Memorial Fund
at San Luis Obispo High School
1499 San Luis Drive
San Luis Obispo, CA 93401
The Tax ID number is 48-1295680
Thank you all for the love and support our family has received throughout the past six years. We feel fortunate and blessed to have such a large, loving group of family and friends. I haven't decided yet what to do with the blog. Many think it should be turned into a book and I would love to see that happen at some point. For now, I hope you will continue to post your comments and thoughts. They bring comfort and smiles, as well as tears.
With love,
Dana
Friday, December 10, 2010
Monday, November 22, 2010
Honey, Cinnamon, and Mustard
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
Sunday, November 14, 2010
Carry the Traveler
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 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.
Friday, November 12, 2010
I Believe
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."
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."
Sunday, November 07, 2010
What is Real
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
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
Tuesday, November 02, 2010
John is Home
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
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
Friday, October 29, 2010
Final Round?
Dear Ones,
Thank you for all the well wishes. I wish I had better news for you.
It's true that John has surprised us all over the years with his strength and resiliency, but it seems that this time, the hurdle is too high for even him.
I met with John's doctors last night, and though the MRI showed no cause for the neurological issues he is exhibiting, (disorientation, inability to speak, and loss of physical control) what it did show was new growth of the leukemia cells in his spinal column (C1 and C2 vertebrae for you who are medically savvy.) The doctor says this form of the disease has no effective treatment. Rather than continue with the chemo regime he has been on, the doctor is suggesting at this point that we stop curative treatment, which makes him feel sicker, and begin to think about palliative, or hospice care.
He was not able to tell me how much time he has exactly, saying it varies from case to case, but he did say it would likely be a matter of weeks, rather than months, until he was likely to succumb.
He remains at French Hospital (room 217) and will likely be there at least through the weekend. We are getting things set up here to bring him home.
He is mostly sleeping, doesn't seem to be in much pain though he complains of occasional headaches. He has to be coaxed to eat a few bites. He can manage a few words sometimes but seems frustrated with not being able to express even his most basic needs. He seems to appreciate visitors but tires quickly so if you go, keep visits short.
His sense of humor still shines through occasionally and he will make a witty comment just when you thought he had dozed off, but I think he is very tired of this battle, and why wouldn't he be? His doctor feels sure that John would not want him to try to extend his life with heroic means if there is no quality to it. He told me that John and he had had that discussion many times.
So we are bracing ourselves for this last chapter. I am really hoping that his mental ability returns, and they say it still might, so that he can have the kinds of conversations I know he wants to have in these last few weeks, and who knows, maybe even squeak out a blog entry or two. So if you pray, pray for that, and that he remains pain free and will find peace in these last few weeks.
Thank you for following our story and for your support and humor when it was most needed.
We love you all,
Dana
Here is a picture in happier times, in Yosemite, not long before the first diagnosis.
Thank you for all the well wishes. I wish I had better news for you.
It's true that John has surprised us all over the years with his strength and resiliency, but it seems that this time, the hurdle is too high for even him.
I met with John's doctors last night, and though the MRI showed no cause for the neurological issues he is exhibiting, (disorientation, inability to speak, and loss of physical control) what it did show was new growth of the leukemia cells in his spinal column (C1 and C2 vertebrae for you who are medically savvy.) The doctor says this form of the disease has no effective treatment. Rather than continue with the chemo regime he has been on, the doctor is suggesting at this point that we stop curative treatment, which makes him feel sicker, and begin to think about palliative, or hospice care.
He was not able to tell me how much time he has exactly, saying it varies from case to case, but he did say it would likely be a matter of weeks, rather than months, until he was likely to succumb.
He remains at French Hospital (room 217) and will likely be there at least through the weekend. We are getting things set up here to bring him home.
He is mostly sleeping, doesn't seem to be in much pain though he complains of occasional headaches. He has to be coaxed to eat a few bites. He can manage a few words sometimes but seems frustrated with not being able to express even his most basic needs. He seems to appreciate visitors but tires quickly so if you go, keep visits short.
His sense of humor still shines through occasionally and he will make a witty comment just when you thought he had dozed off, but I think he is very tired of this battle, and why wouldn't he be? His doctor feels sure that John would not want him to try to extend his life with heroic means if there is no quality to it. He told me that John and he had had that discussion many times.
So we are bracing ourselves for this last chapter. I am really hoping that his mental ability returns, and they say it still might, so that he can have the kinds of conversations I know he wants to have in these last few weeks, and who knows, maybe even squeak out a blog entry or two. So if you pray, pray for that, and that he remains pain free and will find peace in these last few weeks.
Thank you for following our story and for your support and humor when it was most needed.
We love you all,
Dana
Wednesday, October 27, 2010
Dear Friends and Family,
Dana here with difficult news. John is back in the hospital. He is fighting some sort of infection, and it has hit him hard. I will write with more news when I have it but at this time, he is in and out of consciousness and is disoriented and unable to respond to even simple questions. The doctors say it is too soon to tell if he will come out of this. Please keep him in your thoughts.
With love,
Dana
Dana here with difficult news. John is back in the hospital. He is fighting some sort of infection, and it has hit him hard. I will write with more news when I have it but at this time, he is in and out of consciousness and is disoriented and unable to respond to even simple questions. The doctors say it is too soon to tell if he will come out of this. Please keep him in your thoughts.
With love,
Dana
Tuesday, October 19, 2010
The other guy was a truck
I went in for my neurosurgery on Friday at 6 am, filled out all the paperwork for the 500th time, and then waited in the pre-op area. This big guy came in and had me sit up, and then slugged me right in the eye and knocked me out. Turned out he was the anesthetist and he was out of juice, so I took one for the team.
What really happened is the surgery went fine, it was over before I knew they had started, done in an hour. I had my own single room, no crazies except me since I am immuno-suppressed (wink wink). I lay around Friday and Saturday morning, pondering the world on Narco (double Vicodin).
The swollen eye came about Sunday morning when I went out to get the paper and walked through a couple of spider lines. I must have been bitten; I felt the lines go across my face, but didn't feel anything, but later I started swelling up until my right eye was almost closed.
I saw the doc yesterday morning, and he agreed it was not an allergic reaction, since it was only in one eye, so cold compresses took care of it. This morning he tried out the Ommaya reservoir, taking out some CSF and putting in some methotrexate. Piece of cake, done in ten minutes, much better than a spinal tap. Stitches come out in a week or so, and the perfect Halloween costume will be ruined a few days early.
One lumpy-headed bastard. Man, I do look like I have been through some @*%$%^! or what?
I love Manitouboo's suggestion for GPS and internet, but Blue Cross would not approve it, plus there is the no-fly-list thing.
A cheery poem from the Writer's Almanac for today:
Obituary
by Ronald Wallace
Just once, you say,
you'd like to see
an obituary in which
the deceased didn't succumb
after "a heroic struggle" with cancer,
or heart disease, or Alzheimer's, or
whatever it was
that finally took him down.
Just once, you say,
couldn't the obit read:
He got sick and quit.
He gave up the ghost.
He put up no fight at all.
Rolled over. Bailed out.
Got out while the getting was good.
Excused himself from life's feast.
You're making a joke and
I laugh, though you can't know
I'm considering exactly that:
no radical prostatectomy for me,
no matter what General Practitioner
and Major Oncologist may say.
I think, let that walnut-sized
pipsqueak have its way with me,
that pebble in cancer's slingshot
that brings dim Goliath down.
So, old friend, before I go
and take all the wide world with me,
I want you to know
I picked up the tip.
I skipped the main course,
I'm here in the punch line.
Old friend, the joke's on me.
"Obituary" by Ronald Wallace, from For a Limited Time Only. © University of Pittsburgh Press, 2008
A cheery poem from the Writer's Almanac for today:
Obituary
by Ronald Wallace
Just once, you say,
you'd like to see
an obituary in which
the deceased didn't succumb
after "a heroic struggle" with cancer,
or heart disease, or Alzheimer's, or
whatever it was
that finally took him down.
Just once, you say,
couldn't the obit read:
He got sick and quit.
He gave up the ghost.
He put up no fight at all.
Rolled over. Bailed out.
Got out while the getting was good.
Excused himself from life's feast.
You're making a joke and
I laugh, though you can't know
I'm considering exactly that:
no radical prostatectomy for me,
no matter what General Practitioner
and Major Oncologist may say.
I think, let that walnut-sized
pipsqueak have its way with me,
that pebble in cancer's slingshot
that brings dim Goliath down.
So, old friend, before I go
and take all the wide world with me,
I want you to know
I picked up the tip.
I skipped the main course,
I'm here in the punch line.
Old friend, the joke's on me.
"Obituary" by Ronald Wallace, from For a Limited Time Only. © University of Pittsburgh Press, 2008
Wednesday, October 13, 2010
Disco brain
My doctor is the Yoda of spinal taps. He curled me up like a little baby, poked around and found the right spot in my back and tapped into a juicy spot, and we were done in no time. He was riding the sciatic nerve for the last 2 minutes, but nothing worse than holding a strong 9 volt battery on your tongue for a while. Zinged right down to the toes of my left foot.
Unfortunately, the juice he took out was tainted with some leukemic cells, and so now I am getting an ommaya reservoir installed in my skull, for the administration of chemo and extraction of fluids for testing. This should be easier than spinal taps, and more effective at getting the chemo to the area that needs it.
You can see in this picture that the doctor peels back a flap of skin, then puts a hole in your head and inserts the ommaya reservoir, which has a small tube that connects to the cerebrospinal fluid (CSF). That is where they want the chemo to go.
For an extra $500, I have asked for the plexiglas window in my skull, and 3 LED lights, red, blue and green. If I am angry, the red lights up; depressed is blue; at peace is green. The trick is to get them all going and create a disco ball effect.
This guy cheaped out, no LEDs (nice zipper tho):
I have to go in the hospital Friday at 6 am, and they will knock me out at 8 am or so to do this, a short operation, but I have to stay overnight, in case I seize up or start running around nekkid. I have arranged so I get a single room, i.e. no lunatics other than me. I had tickets to see Hal Holbrook as Mark Twain, so too bad, I bought those for someone else.
My meeting with the oral surgeon last Thursday was useless, as he wants the jaw to heal from the infection and extraction for a month or two, so I will see him in a few weeks. It is healing very fast. Mike B and I went up to the Jade Festival last Thursday, and stayed at Limekiln Park, 85 miles north.
Jade Belly Dancers
Bruce M, me, AJ (Mike and Sue's daughter)
Patience shopping for beads
We took the Ford Econoline RV, which remains unnamed. Sue and Patience and AJ came up Friday, and we hung around the Jade Fest, listening to the music and checking out the jade and other rocks, and the people and the cake and smoothies. I was actually well-dressed in that crowd! The refrigerator on the RV worked great, but we didn't test the wastewater systems with no disposal site nearby.
Monday I got a shot of cortisone deep into my left hip. It felt great right away, because of lidocaine, marcaine, Caan and Abel, cane backed chairs, sugar cane, and all the other canes they dumped in there. Once those started wearing off, I didn't feel nearly so Abel, but the cortisone takes a few days to settle in and get to work. Doc even said I should able to golf. Never could before, haha.
After meeting with the neurosurgeon, I was snacking on Chex Mix after lunch. Next thing I know I am cutting my cheek as I eat a pretzel. Apparently I cracked the edge off a temporary crown. How do prisoners hide razor blades in their mouths? I was getting shredded. I called the dentist, and luckily the permanent (?) crowns are in and he can put them in tomorrow, moving up from next Monday. Right now I have piece of xylitol gum draped over the sharp edge. Where did the cracked-off piece go? I hope I don't get torn up when it exits.
The big 25 year anniversary is coming up in November, so Dana and I are looking at Galapagos Islands cruises and visiting Ecuador. Anyone out there knows anything about this area, tell me.
Wednesday, October 06, 2010
Dreams
Something fundamental has changed in my life - I remember dreams, often as though they are real. I woke this morning to the sound of someone violently retching in the bathroom next to my room. I looked out my window to see if John had come back early from his GF's, and then looked in his bedroom. I went downstairs and asked Dana if she was alright, and she was. It was raining outside, and my brain converted that into an imageless dream of violent retching sounds.
Now I have to speculate that other events that have driven me nuts were actually dreams. I searched high and low for $200 I thought I had stuffed in a toilet paper roll before the Yellowstone trip. Was that a dream? Maybe the sheaths that were stripped from my neurons were guarding a border between reality and fantasy. Am I actually awake now?
I had a second MR of my skull last week, and that shows no difference from the one a month ago. This is a good thing as it means there is no progression of any disease, leukemia or MS, in my brain. MS gets a guess because of the stripped neurons. This MR is also a bad thing, because we have no explanation for why I am getting vertigo sensations on standing, increasingly so, and now even when sitting at times. These sensations are followed by an instant headache of about 2 minutes.
So, lucky me, I will go to my docs today and get a lumbar puncture (this is spinal tap) with an injection of methotrexate into my spine. The methotrexate will travel into my brain and kill any leukemia it finds. This is akin to setting off a bug bomb in your kitchen - make sure your good stuff is hidden away. This is about the 20th time they have done this to me, but this time the doc will insert the needle 'blind', so to say. Most other times the perfoming doc would use fluoroscopy, to see where the needle was going. I guess my doc has done this 1,000 times, so I am not too worried. In the worst case he hits the sciatic nerve, I jump 2 feet, and the needle breaks in my spine.
These are pics from the great dinner we had at Randy's:
Now I have to speculate that other events that have driven me nuts were actually dreams. I searched high and low for $200 I thought I had stuffed in a toilet paper roll before the Yellowstone trip. Was that a dream? Maybe the sheaths that were stripped from my neurons were guarding a border between reality and fantasy. Am I actually awake now?
I had a second MR of my skull last week, and that shows no difference from the one a month ago. This is a good thing as it means there is no progression of any disease, leukemia or MS, in my brain. MS gets a guess because of the stripped neurons. This MR is also a bad thing, because we have no explanation for why I am getting vertigo sensations on standing, increasingly so, and now even when sitting at times. These sensations are followed by an instant headache of about 2 minutes.
So, lucky me, I will go to my docs today and get a lumbar puncture (this is spinal tap) with an injection of methotrexate into my spine. The methotrexate will travel into my brain and kill any leukemia it finds. This is akin to setting off a bug bomb in your kitchen - make sure your good stuff is hidden away. This is about the 20th time they have done this to me, but this time the doc will insert the needle 'blind', so to say. Most other times the perfoming doc would use fluoroscopy, to see where the needle was going. I guess my doc has done this 1,000 times, so I am not too worried. In the worst case he hits the sciatic nerve, I jump 2 feet, and the needle breaks in my spine.
These are pics from the great dinner we had at Randy's:
Earl checks Paul for ear wax, and Kim checks Paul's muscle tone. Paul chuckles
Randy is amazed that Gail ate the whole thing
Cathy licks her lips thinking how handsome Earl is, while Kris thinks she can kick Cathy's butt
Paul is about to eat all the bruschetta. I am tellling him not to do it, or I will pour water on his head. Dave threatens to punch Paul
Pat, Maurice and I are stunned at the bad joke that we just heard
Jeanne and Paul are freaked that Dave just sneezed into the salad
As for the RV, I met with a Chevy big engine expert in Bakersfield last Saturday, a retired man that had worked on these engines for many years. As feared, he told me the RV had a thrown rod, and it would be about $4G to fix. I talked to another Chevy big engine expert, man who actively repairs these, and he guaranteed he could fix it for $3G. What to do, what to do.
I think I will have to try to unload it as is, take the beating, move on. Anyone want an immobile RV? Fix the engine and you can get in cheap!
So today I get a spinal tap, and tomorrow I meet with an oral surgeon about setting an implant in my jaw for a crown, then next week I see my dentist to put 2 crowns on, and start prepping 2 other teeth for crowns. After we ruled out chemo or dental hygiene as the cause of all this new decay, my dentist asked if I used Tums or Rolaids. I do, lots of them, because of acid reflux. He said those are almost all sugar! Quit them now. Great.
Also, on Monday, to celebrate Columbus Day, I will get a cortisone injection deep into my hip, done under fluoroscopy and damaging enough that I need a driver to get home. So waah, cry me a river. It's just one thing after another, and the only way to make it stop is to not wake up. I am not going there yet, my doc always has one more thing to try, and I am always curious to see what is a dream and what is reality.
Plus, I have all this work to do before I croak. I started back in Physical Therapy yesterday, as I want to look better before I go. And to be able to get off the toilet without help. I made a list of items, which Dana saw and said, 'Gee, this is grim.' It is, but these things must be done - write a last will, a living will, get the finances straight so that Dana can handle them, write an obit (I am not leaving it up to anyone else to say nice things about me after I am gone), clean up all the messes I left in the garage and yard, make sure any assets are held in the most tax-advantaged way, and other stuff I haven't thought of yet.
I think this is the way to do it, if you have some time. If I could get a more precise time from my doctor, I would plan a pre-death memorial service, where you all could say nice things about me (since I would be there), and I could drink a beer or two and go out in style. I better wake up.
Thursday, September 23, 2010
Back to SLO
Note the stack of planes over the wing.
I got back here Tuesday night at about midnight local time, 15 hours to go 3000 miles. I remember when that was a 6 hour trip. In Chicago, they forgot to have a plane with a windshield waiting, and when they finally got one 1.5 hours later, a weather system had moved in. They loaded the plane so we wouldn't run away, and then had us sit on the tarmac for another 1.5 hours. Needless to say, I missed my connection in SLO, and now was faced with the last flight out of SFO to SBP, etd of 10:45, the fog time. That is why I had booked the earlier flight, ever wary of the FOG.
We landed though, and I fell into my own bed. Happy to be here.
We held a memorial service for my Mom on Sunday, the 12th, a simple affair with a short prayer service, and many of Mom's friends and neighbors paid their respects, as did the friends of all the siblings. We then held a reception or collation, as they say in RI, meaning everyone was invited to gather at a local restaurant for food and drink. This worked out perfectly, as we were completely guessing on how many would attend and had only room for one more person and plenty of very good food.
In the days following, I found myself occasionally thinking, I should call Mom, and then catch myself. That will pass.
I can't say enough about the kindness of Bill and Rose, providing us (my brother and I) with food and lodging, and Leslie and Bob for lending me a car, and for putting up Lisa and Manuel. I went golfing with Bill a few times, and played badly and felt badly for days after. Wrecked my back and left shoulder and ego, waaah.
Randy and Gail were super kind too, throwing an awesome and delicious dinner party for me and many of my old friends. They've done this before when I stumbled into town. Unfortunately, I started getting a toothache the Saturday before while golfing with Bill, and my left jaw started going numb. On Tuesday the dentist yanked a bad tooth (#21) and put me on penicillin for the infection, so I couldn't eat fast enough at the dinner party, and Pat and Paul ate all the brownies before I got any.
A couple of days later a bunch of hooligans gathered at the Narragansett Inn in Jamestown to hear the Lois Greco Band play, and they rocked. Lois was channeling Janis Joplim, and Earl was smoking the bass (guitar not fish), and our ears fell off. See http://www.loisgreco.com/. Check out the videos, this band is tight!
Instead of watching the Patriots lose to the hated Jets, Earl took me out on his boat on the Narrow River on Sunday afternoon, and asked me 200 questions about my relationships with people, in preparation for his next career, 'Dr. Earl, Hoarse Whisperer.' It was nearing sunset, and we headed to the rivermouth. Igor was leaving his mark, so we did not venture into the sea, but it was beautiful and serene.
Monday Pat and Bill McNiff and I got together for lunch in Narragansett, and then went to check the waves. Bill and I traded leukemia tales, and I will try to cure my hand cramping with salt. I neglected to take any pictures, and not protect the innocent as there were none present. I checked my phone and I only took one pic the entire trip, and that is above. Sheesh, I claim brain damage.
Monday Pat and Bill McNiff and I got together for lunch in Narragansett, and then went to check the waves. Bill and I traded leukemia tales, and I will try to cure my hand cramping with salt. I neglected to take any pictures, and not protect the innocent as there were none present. I checked my phone and I only took one pic the entire trip, and that is above. Sheesh, I claim brain damage.
Monday, September 13, 2010
Mist in my eyes
Written on 9/10 and 9/11
The most difficult thing to decide regarding an RV trip is which decision I made was the stupidest. I suppose the first stupid decision was the most damaging, since the others fell like dominoes after that. That decision was that it would be cool to cross the country in an RV, less work than setting up a tent and campsite, and that the increased costs would be offset by the fun of travelling that way.
I am writing this from the anteroom of my mom’s nursing home room. My brother and I are here right now, and my mom is sleeping, knocked down by a dose of morphine to help her breathe. We came by earlier today and she mustered a little, not much, and does not look well. It’s good that I abandoned the RV trip and flew out today.
Not that I was going to get a choice on abandoning the RV trip, the RV trip was abandoning me. We had nothing but troubles. We left last Saturday at 11:30 am, and Cuesta Grade (6 degrees up) should have informed me that the RV was not up to this journey. We never made it over 45mph.
A half hour before Bakersfield, ~150 miles in, and the RV starts coughing and kicking and losing speed. We’d slow to 45, then get back to 55. I pull into the Bakersfield WalMart and get carb cleaner, some fuel filters and gas additive, then stop and fill up with premium and put in the additive. We drive over to John’s girlfriend Laura’s house, where we were going anyway so they could dine together for the last time for some weeks. Along the way I see an O’Reillys Auto (used to be Kragen), so I stop there and get another filter. Now I have 4 filters, none specific to the 454 engine, but maybe. At Laura’s, I start trying to find where the fuel filter might go.
We all go out for Mexican food with Laura’s parents, and then I search some more with the laptop and Laura’s WiFi connection, but do not find anything. I spend the night in the RV in Laura’s driveway. This is another warning that I ignore. In the morning I wake at 4:30, and everything is going poorly. I cannot find matches to light the stove, and when I do I find the RV’s propane is gone. It must have been running the refrigerator on the road. I take out the coleman stove and have coffee at 5:30, then continue researching fuel filters for the Chevy 454.
I call the Pep Boys, and they say they have the fuel filter, so I drive over there guided by the Garmin, and they have a filter that fits a metal housing on the carburetor that has ‘FILTER’ printed on it. Seems like a winner. As I am driving back to Laura’s to get John, I realize the Garmin has died. The adaptor looks broken, or is it a fuse? I call John and he talks me in. It is starting to look like I have the Anti-Midas touch.
I cannot loosen the nut that holds the fuel line into the filter, in spite of multiple applications of WD40 since the night before. If I force this nut I could snap the fuel line, and then the gig would be up. This is a sign to go back that I ignore, another bad decision is about to get made, I could abandon ship right here and limp back to SLO. I do not force this nut, so whichever way we go we will live with the old filter.
We press on to Zion, lugging up the hills, filling up at each half tank with additives and premium. We arrive at Zion at 10:30, and the bulletin board says Fiore site B41. We go to loop B, follow it all the way around from site 1 to site 40, where the loop ends, and we ponder the cosmic trick. On further examination of the campground map we see that site 41 is part of a subloop starting at site 6. We find it and camp.
In the morning I try to loosen the fuel filter housing again, spray more WD40, then shift my focus to fixing the deadbolt on the door. After an hour struggle and with John’s help, we make it work. At about this point in the morning I get an email describing my mom’s condition, and it isn’t good. She is dying soon. We make the decision to turn back, and I call Dana and have her set me up a flight, Wed. redeye arriving Thurs am.
It is now almost 1pm so John and I head out for some hiking and sights. My hip is killing me, and 2 Aleve are not helping much, so we keep it limited to the Grotto and the Emerald Pools. I am off steroids this week, just when I could have used them. John asked me if I was off steroids earlier because he noticed I was talking a lot less.
When we get back to the RV, we see dirt all over the couch, and the Sun Chips are spilled out on the counter. We wonder how critters got in, when John points to the doghouse (engine cover between the seats) that is not on, since I was working on the fuel filter. A bear could have gotten through there. Doh!
We are really hot and sticky, and looking forward to showers, but notice that the shower is not draining. Back in SLO we had sanitized the fresh water holding tank, and then run water through the sinks and shower. We did not drain the gray water tank then, where the sink and shower water goes. Since it was only rinse water I should have, but didn’t in deference to the neighbors, and now I have an overfilled gray water tank. The dishes water has also mingled in, so if I want to shower I will have to do so as though being stewed, with bits of onion and garlic at my ankles. I forego the shower.
I wake early, get coffee, and head out with John asleep. He wakes soon, thanks to big speed bumps, and we head to the dump station and empty the holding tanks. I take a shower right there, and then dump the gray waste again, and we hit the road back to SLO. I feel quite defeated, and sink into a foul mood, but John is forgiving and says at least we tried and it has been a good adventure.
I decide we should at least have a small gambling adventure, so we pull into Mesquite. I know the first gas station is a tourist trap price, so I drive through town, all the while explaining some of the nuances of blackjack to John. The 40mph road I am on turns into 25mph school zone, and next things I know the lights are flashing behind me. $160 fine, pay attention, tonto. We split $100 at a $2 blackjack table, and John wins $8 and I lose $8.
We limp onward, and actually have to pull off the highway at one point, when we cannot make the grade halfway up a long uphill (Halloran Summit). We get going again, and a few hours later, 13 miles outside of Bakersfield, we hear a banging noise under the doghouse. John is driving, but I hear it first, and it sounds like a belt has just given way. He limps up to the next exit, not far, and I can see the temp gauge has gone up a bit.
There is a nice big sandy area with one splotch of shade from the only tree. It is 5:15, figures, all the mechanics just quit for the day. I pull the doghouse off and blistering heat comes off the engine, which is normal, but I cannot stick my face in there with the heat. I call some mechanics, looking for someone that can help, and only Pep Boys thinks they can do this job. I call AAA for a tow, thankfully I added a rider for RV towing before I left, and that gets me a 100 mile tow. Pep Boys will start the job if I arrive before 7:59. AAA calls back and says my tow will arrive at 7:40, and with his hookup time we won’t make it.
AAA comes and tows me into the Pep Boys yard, where I have an appointment at 8am, when they open.. Laura comes and gets John, and I spend the night in the RV in the Pep Boys parking lot. I try to get them going first thing in the morning, and they are searching for the right belts, but the mechanic says he does not see a missing belt. I point out the 2 pulleys that have no belt, and he points out that they are offset from each other so a belt would just spin off. I ask him what would have moved the belt arrangement, but no answer.
He finds water leakage around the water pump, and I surmise that the banging I hear is the water pump breaking apart. They are looking for the part, and the update I get is that they have to remove the whole front end to replace the water pump, maybe 5 hours labor. I do not have that kind of time, so I call off the whole deal. I have been searching for RV storage yards all this time, and have one 7 miles away for $45/month. I need to fly out of SLO at 8:30, so I call John, who has Laura prepped to drive us to SLO.
I pack up everything that is valuable and perishable from the RV, John and Laura arrive, and we stuff her car. I drive the RV to the storage with the idea that it will overheat, but it never does. The problem is not the water pump. Blown valve? Exhaust manifold? I get to the storage yard, put the RV to rest for a month, and we drive to SLO. I repack, shower, and get on the plane to RI.
The most difficult thing to decide regarding an RV trip is which decision I made was the stupidest. I suppose the first stupid decision was the most damaging, since the others fell like dominoes after that. That decision was that it would be cool to cross the country in an RV, less work than setting up a tent and campsite, and that the increased costs would be offset by the fun of travelling that way.
I am writing this from the anteroom of my mom’s nursing home room. My brother and I are here right now, and my mom is sleeping, knocked down by a dose of morphine to help her breathe. We came by earlier today and she mustered a little, not much, and does not look well. It’s good that I abandoned the RV trip and flew out today.
Not that I was going to get a choice on abandoning the RV trip, the RV trip was abandoning me. We had nothing but troubles. We left last Saturday at 11:30 am, and Cuesta Grade (6 degrees up) should have informed me that the RV was not up to this journey. We never made it over 45mph.
A half hour before Bakersfield, ~150 miles in, and the RV starts coughing and kicking and losing speed. We’d slow to 45, then get back to 55. I pull into the Bakersfield WalMart and get carb cleaner, some fuel filters and gas additive, then stop and fill up with premium and put in the additive. We drive over to John’s girlfriend Laura’s house, where we were going anyway so they could dine together for the last time for some weeks. Along the way I see an O’Reillys Auto (used to be Kragen), so I stop there and get another filter. Now I have 4 filters, none specific to the 454 engine, but maybe. At Laura’s, I start trying to find where the fuel filter might go.
We all go out for Mexican food with Laura’s parents, and then I search some more with the laptop and Laura’s WiFi connection, but do not find anything. I spend the night in the RV in Laura’s driveway. This is another warning that I ignore. In the morning I wake at 4:30, and everything is going poorly. I cannot find matches to light the stove, and when I do I find the RV’s propane is gone. It must have been running the refrigerator on the road. I take out the coleman stove and have coffee at 5:30, then continue researching fuel filters for the Chevy 454.
I call the Pep Boys, and they say they have the fuel filter, so I drive over there guided by the Garmin, and they have a filter that fits a metal housing on the carburetor that has ‘FILTER’ printed on it. Seems like a winner. As I am driving back to Laura’s to get John, I realize the Garmin has died. The adaptor looks broken, or is it a fuse? I call John and he talks me in. It is starting to look like I have the Anti-Midas touch.
I cannot loosen the nut that holds the fuel line into the filter, in spite of multiple applications of WD40 since the night before. If I force this nut I could snap the fuel line, and then the gig would be up. This is a sign to go back that I ignore, another bad decision is about to get made, I could abandon ship right here and limp back to SLO. I do not force this nut, so whichever way we go we will live with the old filter.
We press on to Zion, lugging up the hills, filling up at each half tank with additives and premium. We arrive at Zion at 10:30, and the bulletin board says Fiore site B41. We go to loop B, follow it all the way around from site 1 to site 40, where the loop ends, and we ponder the cosmic trick. On further examination of the campground map we see that site 41 is part of a subloop starting at site 6. We find it and camp.
In the morning I try to loosen the fuel filter housing again, spray more WD40, then shift my focus to fixing the deadbolt on the door. After an hour struggle and with John’s help, we make it work. At about this point in the morning I get an email describing my mom’s condition, and it isn’t good. She is dying soon. We make the decision to turn back, and I call Dana and have her set me up a flight, Wed. redeye arriving Thurs am.
It is now almost 1pm so John and I head out for some hiking and sights. My hip is killing me, and 2 Aleve are not helping much, so we keep it limited to the Grotto and the Emerald Pools. I am off steroids this week, just when I could have used them. John asked me if I was off steroids earlier because he noticed I was talking a lot less.
When we get back to the RV, we see dirt all over the couch, and the Sun Chips are spilled out on the counter. We wonder how critters got in, when John points to the doghouse (engine cover between the seats) that is not on, since I was working on the fuel filter. A bear could have gotten through there. Doh!
We are really hot and sticky, and looking forward to showers, but notice that the shower is not draining. Back in SLO we had sanitized the fresh water holding tank, and then run water through the sinks and shower. We did not drain the gray water tank then, where the sink and shower water goes. Since it was only rinse water I should have, but didn’t in deference to the neighbors, and now I have an overfilled gray water tank. The dishes water has also mingled in, so if I want to shower I will have to do so as though being stewed, with bits of onion and garlic at my ankles. I forego the shower.
I wake early, get coffee, and head out with John asleep. He wakes soon, thanks to big speed bumps, and we head to the dump station and empty the holding tanks. I take a shower right there, and then dump the gray waste again, and we hit the road back to SLO. I feel quite defeated, and sink into a foul mood, but John is forgiving and says at least we tried and it has been a good adventure.
I decide we should at least have a small gambling adventure, so we pull into Mesquite. I know the first gas station is a tourist trap price, so I drive through town, all the while explaining some of the nuances of blackjack to John. The 40mph road I am on turns into 25mph school zone, and next things I know the lights are flashing behind me. $160 fine, pay attention, tonto. We split $100 at a $2 blackjack table, and John wins $8 and I lose $8.
We limp onward, and actually have to pull off the highway at one point, when we cannot make the grade halfway up a long uphill (Halloran Summit). We get going again, and a few hours later, 13 miles outside of Bakersfield, we hear a banging noise under the doghouse. John is driving, but I hear it first, and it sounds like a belt has just given way. He limps up to the next exit, not far, and I can see the temp gauge has gone up a bit.
There is a nice big sandy area with one splotch of shade from the only tree. It is 5:15, figures, all the mechanics just quit for the day. I pull the doghouse off and blistering heat comes off the engine, which is normal, but I cannot stick my face in there with the heat. I call some mechanics, looking for someone that can help, and only Pep Boys thinks they can do this job. I call AAA for a tow, thankfully I added a rider for RV towing before I left, and that gets me a 100 mile tow. Pep Boys will start the job if I arrive before 7:59. AAA calls back and says my tow will arrive at 7:40, and with his hookup time we won’t make it.
AAA comes and tows me into the Pep Boys yard, where I have an appointment at 8am, when they open.. Laura comes and gets John, and I spend the night in the RV in the Pep Boys parking lot. I try to get them going first thing in the morning, and they are searching for the right belts, but the mechanic says he does not see a missing belt. I point out the 2 pulleys that have no belt, and he points out that they are offset from each other so a belt would just spin off. I ask him what would have moved the belt arrangement, but no answer.
He finds water leakage around the water pump, and I surmise that the banging I hear is the water pump breaking apart. They are looking for the part, and the update I get is that they have to remove the whole front end to replace the water pump, maybe 5 hours labor. I do not have that kind of time, so I call off the whole deal. I have been searching for RV storage yards all this time, and have one 7 miles away for $45/month. I need to fly out of SLO at 8:30, so I call John, who has Laura prepped to drive us to SLO.
I pack up everything that is valuable and perishable from the RV, John and Laura arrive, and we stuff her car. I drive the RV to the storage with the idea that it will overheat, but it never does. The problem is not the water pump. Blown valve? Exhaust manifold? I get to the storage yard, put the RV to rest for a month, and we drive to SLO. I repack, shower, and get on the plane to RI.
Monday update
The service we had yesterday came off beautifully, just as Mom would have wanted it, I think. I am spending today trying to get a dentist to fix the toothache, probably big cavity, that started Friday night. Relentless.
Friday, September 10, 2010
Goodbye Mom
In Grace,
a fighter and a lover,
a nurturer, wife and mother and daughter,
raised in
fighting times, tough times,
worked hard to rise up,
feisty, full of life and
persistence,
smart and wise and
unwilling to be beaten down.
We are here now
thanks to her,
go in Grace.
My mom was such a fighter that she was hanging on until she had said goodbye to all her children, and was waiting on my brother and I to make it back to RI. Frank made it Wednesday, and I got there at ten yesterday morning. In spite of how weak she was, she acknowledged our presence, struggling to get her piercing blue eyes open and to say hello, and Frank and I went back after lunch to sit with her. Each of us spoke to her, telling her what a good mom she was, and giving her permission to stop fighting, that it was okay with us. It’s kind of ridiculous to think that she wanted or needed our permission, but I think she was fighting hard to see all her children one last time.
Soon my mom became very labored in her breathing, and the nurse told us she may be transitioning. My brother was holding her hand, and I took her other hand, and she passed away. A great woman has moved on, free of this mortal pain, and my family appreciates all your thoughts and condolences.
She lived through the Depression as a child and teen, and was shaped in part by that experience. Her dad was a proud submarine mechanic in the great war, and then found work as a custodian. Mom told me how she and her mom would save their cigarette butts, and then put a pin through the ends and smoke the remainders. When I was 2 and still in diapers, she was caring for Frank at 5, Joanna at 4, me at 2, my newborn sisters Lisa and Leslie, and her mom, who was terminally ill. My dad was forever working, trying to bring in enough for our family to get ahead.
We were able to move to a bigger house in the suburbs, and mom went off to college while taking care of us, earning her masters degree and becoming a teacher. She was a very hard-working and intelligent woman, and taught us a work ethic and perseverance that has helped us in our lives. I could always count on her for some guidance when things were difficult, but she would never interfere in my life, never let me hide behind her apron strings. We will miss her.
a fighter and a lover,
a nurturer, wife and mother and daughter,
raised in
fighting times, tough times,
worked hard to rise up,
feisty, full of life and
persistence,
smart and wise and
unwilling to be beaten down.
We are here now
thanks to her,
go in Grace.
My mom was such a fighter that she was hanging on until she had said goodbye to all her children, and was waiting on my brother and I to make it back to RI. Frank made it Wednesday, and I got there at ten yesterday morning. In spite of how weak she was, she acknowledged our presence, struggling to get her piercing blue eyes open and to say hello, and Frank and I went back after lunch to sit with her. Each of us spoke to her, telling her what a good mom she was, and giving her permission to stop fighting, that it was okay with us. It’s kind of ridiculous to think that she wanted or needed our permission, but I think she was fighting hard to see all her children one last time.
Soon my mom became very labored in her breathing, and the nurse told us she may be transitioning. My brother was holding her hand, and I took her other hand, and she passed away. A great woman has moved on, free of this mortal pain, and my family appreciates all your thoughts and condolences.
She lived through the Depression as a child and teen, and was shaped in part by that experience. Her dad was a proud submarine mechanic in the great war, and then found work as a custodian. Mom told me how she and her mom would save their cigarette butts, and then put a pin through the ends and smoke the remainders. When I was 2 and still in diapers, she was caring for Frank at 5, Joanna at 4, me at 2, my newborn sisters Lisa and Leslie, and her mom, who was terminally ill. My dad was forever working, trying to bring in enough for our family to get ahead.
We were able to move to a bigger house in the suburbs, and mom went off to college while taking care of us, earning her masters degree and becoming a teacher. She was a very hard-working and intelligent woman, and taught us a work ethic and perseverance that has helped us in our lives. I could always count on her for some guidance when things were difficult, but she would never interfere in my life, never let me hide behind her apron strings. We will miss her.
Monday, August 30, 2010
Under pressure
Well, anchors aweigh isn't all that easy. I did the crazy thing and bought the Winnebago Chieftain, the 22' with granite counters and wood flooring. It is much roomier inside, full oven and 4-burner stove, lots more storage, generator, bigger bath, and I figured it would be better to go in style. John and I may be more at peace with some space. The Chief has bunkbeds in the back, a couch that makes a full-size bed, and a twin bed in the loft over the front seats. Plenty of room for hitchhiking hotties. Do they still do that?
Plus, I need to use up my carbon allotment. I am hoping for 7-8 mpg from the 7.8L 454 Chevy monster engine, maybe more since I am not towing anything. However, there are a few big issues. The Chief is in the RV garage right now, getting the fuel tank fixed. It is leaking at the fill tube, which I didn't realize until we put some gas in it. When I bought it the tank was near empty. I suppose the seller knew that leak was there, but maybe that's why it was only $4K. With only one 32 gallon fuel tank, the range is only about 250 miles, where the Econoline had 2 tanks and a range of 400 plus miles.
I think with the upgrades and miles, 67,500, I have a few grand to fix what is wrong and still be ahead. I have spent the last week fixing lots of smaller things. The guy I bought it from kept losing keys, so I am struggling with doors and some side compartments. It's time to see a locksmith. The spare tire cover was locked with no keys, so I drilled the locks out and have it working but not locking. A few miniblinds, light covers, non-working overhead lights, a big cleaning, but the major components like propane, toilets and sinks, wastewater tanks, are all working and not leaking. The engine is strong, new front shocks, tranny seems sound, and I hope the mechanic doesn't find much else.
That other RV I bought, the Ford Econoline, was displaying signs of a troubled youth, so I will take the time to fix some leaky spots over the next few months, and try to recover the costs in the spring when people are thinking of travelling again. Dana of course was right, don't rush into it she said, but I don't feel like time is on my side. I am trying to get back east to see my Mom by her birthday, Sep. 19, so realistically we have to leave by the 5th if we want to see some sights along the way.
We had planned to leave this past weekend, then reality struck me in the head. I had an appointment Friday to bring the RV in and get the fuel tank fixed. I had a chemo dose of methotrexate on Thursday, and then 8:30 Friday another chemo appointment for some Asparaginase. I had this drug back in '05 at Stanford and had a local reaction to it at the site of injection (crook of my elbow), and then I had it a couple of weeks ago as an IV. I had no reaction then except a tougher nadir, but it's a more powerful drug than Cytarabine.
So Friday they start dripping the asparaginase into me, and about 3 minutes in I feel the world is getting a little shakier, and my head is heating up. I ring the holy moly bell, and the nurse comes over and sees that I am crashing, going into anaphylactic shock. She and some other nurses call the doc over, and they are hitting me with epinephrine and other stuff, and they call 911. I vaguely hear them calling out the blood pressure, and it is dropping like a stone. When it hits 60/40 I think "This is it, baby, I am going down," but I have a great doc and skilled nurses, and by the time the ambulance arrives I am stabilized.
Off we go to the hospital, to the ER, and the doctor there decides he has to rule out a stroke or heart attack. I had an allergic reaction, I am not pregnant either, don't make me pee on a stick. It is now after 10:00 am, ER is a zoo complete with loonies, and I see my day slipping away. My boat won't be setting sail this weekend. The doctor comes in with CT results and tells me my brain looks abnormal, there may be leukemia in there. I tell him we just ruled that out a week ago with a spinal tap, but he is undaunted. I am doing all I can not to get sarcastic with this guy, since he holds my day in his clipboard head. He wants to be House, and I want to be Road Warrior.
Now he wants an MRI of my head to see what is going on, and he schedules it for 3:30. I suggest that whatever is crawling around in my cranium won't kill me over the weekend; let's schedule this for Monday. No, this looks weird, let's get it done, and oh, no food until then. I ask why no food for an MRI of my skull, and he says they don't want me puking in the MR tube. I tell him I just had a dose of Anzmet, a very good anti-nausea, and I am not a puker anyway, but no, no food until 4:30. I didn't plan to fast but what can you do? I had no book, no magazine, only my dying cell phone. Thankfully there was a succession of loomies trying to get some pharmaceuticals for their pains, and they were entertaining.
We get the MRI done, and the doctor who reads the scan comes in and says I have brain damage; the sheath that should be wrapped around each neuron is stripped away. That expains the weight loss, I tell him, and the urge to pole dance. For crying out loud, what did he expect after 5 1/2 years of chemo, cranial and full body irradiation, and too many drugs? But, let's press on. He says this could indicate leukemia or MS, they have similar symptoms. Numbness in the hands, vision problems, loss of strength. Dana has shown up just in time to hear all this from the doctor, including some bit about possible seizures. That makes her real comfy with the idea of an 8,000 mile road trip in a big old RV. Hah, brain damage, what do they know?
I ask him about the prognosis with MS, and he tells me it would take years to kill me. I tell him it's a good thing since I am already dying of leukemia and only have 1-2 years left. I know how this will play out, though. Some genius researcher in Germany or Japan will come up with a stem cell cure for ALL, and then can I can turn into a MS patient. If that happens I will buy a 30 year old airplane and learn to fly. The bucket gets bigger. Heavier too.
So now we are probably leaving this weekend, along with all the other Labor Day vacationers. First to Zion, then to the Badlands. I told John I get the white hat and he gets the black, and we ride horses at each other down this canyon, firing away with laser tag. That would be cool. Then we have a shootout in Deadwood. Hah, brain damage. Niagara, Toronto, maybe Montreal, hang in there Mom, I am riding a white horse with a white hat.
Glad to hear that Pat came up with Winnebacome, Winnebago. Kind of long though. We are thinking of other names for the RV; Dana suggested 'John's Folly,' but I like the idea of a woman's name for machines and boats. Winnie is too obvious. What Indians had women as chiefs? Sacagawea was not a chief, but she did great things and was a wanderlust. That name may be too long and get shortened to 'The Sac,' not very appealing. Same problem with Pocahontas. So, I am open to suggestions. John says 'Chief Bull Goose Loony,' forget women's names, but why not Chief Bromden then? Chief Broom suits my anal retentive nature. Plus, he got away. Winnalottery? WinnaWinnaChickenDinna?
Nice to hear from you Janna and MG, hope all is well. And Mac, if I coulda bought that Appalachian hillbilly moonshine RV, I woulda, but a liberal like me would get found out and Deliveranced, and I don't want that. I try not to joust with the tea partiers, but it is so hard. Now that Obama is a muslim from Kenya responsible for the deficit and wars, what can I say? Thankfully I can always count on some serene imagery from Mo to grease my anchor chain. Say, if I name the RV Minnie, we could all get in and be the Pep boys, Minnie, Mo and Mac!
So if all goes well, we are out of here and on an epic journey. I will keep a travelogue posted when we find internet cafes. Anchors aweigh!
Plus, I need to use up my carbon allotment. I am hoping for 7-8 mpg from the 7.8L 454 Chevy monster engine, maybe more since I am not towing anything. However, there are a few big issues. The Chief is in the RV garage right now, getting the fuel tank fixed. It is leaking at the fill tube, which I didn't realize until we put some gas in it. When I bought it the tank was near empty. I suppose the seller knew that leak was there, but maybe that's why it was only $4K. With only one 32 gallon fuel tank, the range is only about 250 miles, where the Econoline had 2 tanks and a range of 400 plus miles.
I think with the upgrades and miles, 67,500, I have a few grand to fix what is wrong and still be ahead. I have spent the last week fixing lots of smaller things. The guy I bought it from kept losing keys, so I am struggling with doors and some side compartments. It's time to see a locksmith. The spare tire cover was locked with no keys, so I drilled the locks out and have it working but not locking. A few miniblinds, light covers, non-working overhead lights, a big cleaning, but the major components like propane, toilets and sinks, wastewater tanks, are all working and not leaking. The engine is strong, new front shocks, tranny seems sound, and I hope the mechanic doesn't find much else.
That other RV I bought, the Ford Econoline, was displaying signs of a troubled youth, so I will take the time to fix some leaky spots over the next few months, and try to recover the costs in the spring when people are thinking of travelling again. Dana of course was right, don't rush into it she said, but I don't feel like time is on my side. I am trying to get back east to see my Mom by her birthday, Sep. 19, so realistically we have to leave by the 5th if we want to see some sights along the way.
We had planned to leave this past weekend, then reality struck me in the head. I had an appointment Friday to bring the RV in and get the fuel tank fixed. I had a chemo dose of methotrexate on Thursday, and then 8:30 Friday another chemo appointment for some Asparaginase. I had this drug back in '05 at Stanford and had a local reaction to it at the site of injection (crook of my elbow), and then I had it a couple of weeks ago as an IV. I had no reaction then except a tougher nadir, but it's a more powerful drug than Cytarabine.
So Friday they start dripping the asparaginase into me, and about 3 minutes in I feel the world is getting a little shakier, and my head is heating up. I ring the holy moly bell, and the nurse comes over and sees that I am crashing, going into anaphylactic shock. She and some other nurses call the doc over, and they are hitting me with epinephrine and other stuff, and they call 911. I vaguely hear them calling out the blood pressure, and it is dropping like a stone. When it hits 60/40 I think "This is it, baby, I am going down," but I have a great doc and skilled nurses, and by the time the ambulance arrives I am stabilized.
Off we go to the hospital, to the ER, and the doctor there decides he has to rule out a stroke or heart attack. I had an allergic reaction, I am not pregnant either, don't make me pee on a stick. It is now after 10:00 am, ER is a zoo complete with loonies, and I see my day slipping away. My boat won't be setting sail this weekend. The doctor comes in with CT results and tells me my brain looks abnormal, there may be leukemia in there. I tell him we just ruled that out a week ago with a spinal tap, but he is undaunted. I am doing all I can not to get sarcastic with this guy, since he holds my day in his clipboard head. He wants to be House, and I want to be Road Warrior.
Now he wants an MRI of my head to see what is going on, and he schedules it for 3:30. I suggest that whatever is crawling around in my cranium won't kill me over the weekend; let's schedule this for Monday. No, this looks weird, let's get it done, and oh, no food until then. I ask why no food for an MRI of my skull, and he says they don't want me puking in the MR tube. I tell him I just had a dose of Anzmet, a very good anti-nausea, and I am not a puker anyway, but no, no food until 4:30. I didn't plan to fast but what can you do? I had no book, no magazine, only my dying cell phone. Thankfully there was a succession of loomies trying to get some pharmaceuticals for their pains, and they were entertaining.
We get the MRI done, and the doctor who reads the scan comes in and says I have brain damage; the sheath that should be wrapped around each neuron is stripped away. That expains the weight loss, I tell him, and the urge to pole dance. For crying out loud, what did he expect after 5 1/2 years of chemo, cranial and full body irradiation, and too many drugs? But, let's press on. He says this could indicate leukemia or MS, they have similar symptoms. Numbness in the hands, vision problems, loss of strength. Dana has shown up just in time to hear all this from the doctor, including some bit about possible seizures. That makes her real comfy with the idea of an 8,000 mile road trip in a big old RV. Hah, brain damage, what do they know?
I ask him about the prognosis with MS, and he tells me it would take years to kill me. I tell him it's a good thing since I am already dying of leukemia and only have 1-2 years left. I know how this will play out, though. Some genius researcher in Germany or Japan will come up with a stem cell cure for ALL, and then can I can turn into a MS patient. If that happens I will buy a 30 year old airplane and learn to fly. The bucket gets bigger. Heavier too.
So now we are probably leaving this weekend, along with all the other Labor Day vacationers. First to Zion, then to the Badlands. I told John I get the white hat and he gets the black, and we ride horses at each other down this canyon, firing away with laser tag. That would be cool. Then we have a shootout in Deadwood. Hah, brain damage. Niagara, Toronto, maybe Montreal, hang in there Mom, I am riding a white horse with a white hat.
Glad to hear that Pat came up with Winnebacome, Winnebago. Kind of long though. We are thinking of other names for the RV; Dana suggested 'John's Folly,' but I like the idea of a woman's name for machines and boats. Winnie is too obvious. What Indians had women as chiefs? Sacagawea was not a chief, but she did great things and was a wanderlust. That name may be too long and get shortened to 'The Sac,' not very appealing. Same problem with Pocahontas. So, I am open to suggestions. John says 'Chief Bull Goose Loony,' forget women's names, but why not Chief Bromden then? Chief Broom suits my anal retentive nature. Plus, he got away. Winnalottery? WinnaWinnaChickenDinna?
Nice to hear from you Janna and MG, hope all is well. And Mac, if I coulda bought that Appalachian hillbilly moonshine RV, I woulda, but a liberal like me would get found out and Deliveranced, and I don't want that. I try not to joust with the tea partiers, but it is so hard. Now that Obama is a muslim from Kenya responsible for the deficit and wars, what can I say? Thankfully I can always count on some serene imagery from Mo to grease my anchor chain. Say, if I name the RV Minnie, we could all get in and be the Pep boys, Minnie, Mo and Mac!
So if all goes well, we are out of here and on an epic journey. I will keep a travelogue posted when we find internet cafes. Anchors aweigh!
Monday, August 23, 2010
The art of insanity
Things have been tough around here. My gut has been in serious pain, on and off, feeling like I got stabbed in the right side, same spot every time. Then I started getting headaches and ear rushes, and dizziness sometimes when I stand up. So last week when I went in for chemo, my doctor checked me out and said skip the chemo, let's get you a CT scan of the abdomen and a spinal tap to see if the leukemia is resurgent. He was concerned (me too) that the area of my pancreas and liver, and my brain, had a buildup of leukemia, and chemo was not working.
I had the CT scan on Thursday and the spinal tap on Friday, too much fun really for just one person. In order to get me in all the right positions, they installed this new joystick device on my head, and they use that to get you to open wide, roll to the side, and other stuff. Here it is:
That is saliva on my tongue, not a piercing.
I just got the call from my doctor with the results, and it turns out my stomach pain is from a kinky intestine, and the headaches are because I bought an RV and I have been fixing all the things wrong with it. My mom is turning 87 on Sept. 19, and I wanted to have a road trip to see her. She is in the hospital right now with some infections, but she is improving.
My son John has agreed to come with me, and the trip was contingent on those results. Now I am going to get chemo on Wednesday, and rush to fix this RV, or abandon ship on this one and buy a better unit. There is one available that is the bomb, slightly bigger but in much better shape and cheaper at $4000, but with a monster engine (7.8 liter V8) and 6-7 mpg v. 10-11 for the one I have.
The RV I have is a 1988 Ford F250, 19' with a 354 v8 with 69K miles, and the other is a 1986 Winnebago Chieftain 22' but really trimmed out and everything working. We are talking granite countertops and wood floors, bamboo ceilings, two working generators, oven, and those are just the things that the Ford doesn't have. The difference in mpg means about $.20 more per mile, and for the luxury and headache relief I may buy it, bite the bullet and set the other one aside for now and repair it to better shape slowly, then sell it. The bad news is the market is flooded with RVs, so it may let it sit until spring.
I have mastered the art of insanity, or am I just stupid? Both.
I was swayed by the Semper Fi status of the RV, but now I think I blew it, because there are too many things wrong with this RV, and I haven't even started looking for roof leaks.
You are the bread and the knife,
the crystal goblet and the wine.
You are the dew on the morning grass
and the burning wheel of the sun.
You are the white apron of the baker
and the marsh birds suddenly in flight.
However, you are not the wind in the orchard,
the plums on the counter,
or the house of cards.
And you are certainly not the pine-scented air.
There is just no way you are the pine-scented air.
It is possible that you are the fish under the bridge,
maybe even the pigeon on the general's head,
but you are not even close
to being the field of cornflowers at dusk.
And a quick look in the mirror will show
that you are neither the boots in the corner
nor the boat asleep in its boathouse.
It might interest you to know,
speaking of the plentiful imagery of the world,
that I am the sound of rain on the roof.
I also happen to be the shooting star,
the evening paper blowing down an alley,
and the basket of chestnuts on the kitchen table.
I am also the moon in the trees
and the blind woman's tea cup.
But don't worry, I am not the bread and the knife.
You are still the bread and the knife.
You will always be the bread and the knife,
not to mention the crystal goblet and--somehow-- the wine.
I had the CT scan on Thursday and the spinal tap on Friday, too much fun really for just one person. In order to get me in all the right positions, they installed this new joystick device on my head, and they use that to get you to open wide, roll to the side, and other stuff. Here it is:
That is saliva on my tongue, not a piercing.
I just got the call from my doctor with the results, and it turns out my stomach pain is from a kinky intestine, and the headaches are because I bought an RV and I have been fixing all the things wrong with it. My mom is turning 87 on Sept. 19, and I wanted to have a road trip to see her. She is in the hospital right now with some infections, but she is improving.
My son John has agreed to come with me, and the trip was contingent on those results. Now I am going to get chemo on Wednesday, and rush to fix this RV, or abandon ship on this one and buy a better unit. There is one available that is the bomb, slightly bigger but in much better shape and cheaper at $4000, but with a monster engine (7.8 liter V8) and 6-7 mpg v. 10-11 for the one I have.
The RV I have is a 1988 Ford F250, 19' with a 354 v8 with 69K miles, and the other is a 1986 Winnebago Chieftain 22' but really trimmed out and everything working. We are talking granite countertops and wood floors, bamboo ceilings, two working generators, oven, and those are just the things that the Ford doesn't have. The difference in mpg means about $.20 more per mile, and for the luxury and headache relief I may buy it, bite the bullet and set the other one aside for now and repair it to better shape slowly, then sell it. The bad news is the market is flooded with RVs, so it may let it sit until spring.
I have mastered the art of insanity, or am I just stupid? Both.
I was swayed by the Semper Fi status of the RV, but now I think I blew it, because there are too many things wrong with this RV, and I haven't even started looking for roof leaks.
Either travelling in a leaker or in style, we may leave as early as this weekend for the road trip back to RI, starting with somewhere in Nevada, then on up to South Dakota and the Crazy Horse memorial. Badlands National Park is right there, and Mt. Rushmore too. From there I am not sure, somewhere in Minnesota or Michigan, and on to Niagara Falls, probably from the Toronto area. If time permits, on to Montreal, and then through NY to RI. Looks like 2 weeks on the road, a week in RI, then return via NC and hang with Lisa and Manuel for a while, and then go see Frank in N.Mex., and then home.
That could be too long a trip, and chemo along the way may prove problematic, but that is the plan for now. After that I plan to outfit the RV with floats and a rudder, and away to Australia!
A Poem, Litany, by Billy Collins
You are the bread and the knife,
the crystal goblet and the wine.
You are the dew on the morning grass
and the burning wheel of the sun.
You are the white apron of the baker
and the marsh birds suddenly in flight.
However, you are not the wind in the orchard,
the plums on the counter,
or the house of cards.
And you are certainly not the pine-scented air.
There is just no way you are the pine-scented air.
It is possible that you are the fish under the bridge,
maybe even the pigeon on the general's head,
but you are not even close
to being the field of cornflowers at dusk.
And a quick look in the mirror will show
that you are neither the boots in the corner
nor the boat asleep in its boathouse.
It might interest you to know,
speaking of the plentiful imagery of the world,
that I am the sound of rain on the roof.
I also happen to be the shooting star,
the evening paper blowing down an alley,
and the basket of chestnuts on the kitchen table.
I am also the moon in the trees
and the blind woman's tea cup.
But don't worry, I am not the bread and the knife.
You are still the bread and the knife.
You will always be the bread and the knife,
not to mention the crystal goblet and--somehow-- the wine.
Subscribe to:
Posts (Atom)
