Holy Cow, I Have Leukemia!

Fly Home

2011-11-17T09:50:00.000-08:00

"Now my friends it's time to go,

And this love will live to grow,

And I want you all to know,

I'm going home."

Thanks to Pat for reminding me of this beautiful song by Arlo Guthrie which was in my head as we marked the one year anniversary of John's death this last Monday with the scattering of his ashes just out beyond one of his favorite surf spots in Morro Bay. It seemed like the right time and place to do it. John's sister JoAnna, his brother Frankie, and his donor sister, Lisa, and her husband Manuel, were all able to come to join us in a celebration of John's spirit on what couldn't have been a prettier autumn morning in Morro Bay. His presence was felt as six to eight foot swells lifted the 72 ft. boat and our spirits with it.

When the boat anchored (at latitude 35degrees 21.832 minutes north and longitude 120degrees 53.607 minutes west)the sun made a sparkling path across the water which calmed a little, and a big, brown pelican circled down and landed next to us and watched solemnly as we read some of John's poetry. Then, his ashes were lowered into the water and after we each threw a red rose in to where the basket had disappeared, the pelican took off and flew away.

I had chosen this poem of Malaysian poet See Fee Lee to share at the ceremony. It was a poem I had sent to John when he was up at Stanford the first time and I was working here in San Luis Obispo. I found it again when I was getting ready for our outing on Monday and it took on new meaning.

Fly home there will be shine

with bright orange light

Fly home there will be sweet

with bright orange light

Fly home there will be caring

with bright orange light

Fly home there will be lovely

with bright orange light

Fly home there will be comfort

with bright orange light

Fly home there will be fortune

with bright orange light

Fly home there will be future

with bright orange light

Fly home Fly home to your nest

with bright orange light

My heartfelt thanks to those of you who thought of us and sent notes of support this last week. I know there are many more who remembered John this week too. There were nearly 100 views of the blog early this week. Thanks for remembering and caring.

With love,

Dana

Back row: Young John, Mikey's girlfriend,Jillian, my sister Stacy, son Mikey, me, Stacy's husband Barry, John's brother Frank, Sue and Mike B, friend Jack, Lia's husband Bill with Lia. Front row: young John's girlfriend Laura, John's sister JoAnna, John's sister Lisa and her husband Manuel.

Mike and Jillian

Our surprise visitor

Frankie reads his poem

Mike B. reads a poem

Click on photos for a larger view.

( This last photo is Lisa and Manuel's boat in North Carolina. Great name. )

For those of you who couldn't be there...

2011-03-14T21:27:00.000-07:00

It is hard to believe four months have passed since John left us. This week marked what would have been his 56th birthday. I still can't quite believe he is gone and sometimes feel like he just might walk through the door, bringing his big energy with him.

My son, John, was able to put the video of John's memorial up on the Vimeo site in two parts. Here are the links. Thanks to all who helped make this day such a special celebration of John.

Here are the links:

Part One: http://vimeo.com/20991577

Part Two: http://vimeo.com/20996347

Links to download the videos are at the bottom of each page on the right hand side.

Love,
Dana

Be Like Water

2010-12-10T12:33:00.000-08:00

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

Honey, Cinnamon, and Mustard

2010-11-22T09:44:00.000-08:00

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

Carry the Traveler

2010-11-14T17:09:00.000-08:00

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.

I Believe

2010-11-12T22:01:00.000-08:00

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."

What is Real

2010-11-07T18:37:00.000-08:00

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

John is Home

2010-11-02T21:23:00.000-07:00

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

Final Round?

2010-10-29T20:39:00.000-07:00

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.

2010-10-27T06:44:00.000-07:00

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

The other guy was a truck

2010-10-19T15:45:00.000-07:00

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

Disco brain

2010-10-13T18:13:00.000-07:00

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.

Dreams

2010-10-06T10:31:00.000-07:00

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:

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.

Back to SLO

2010-09-23T16:03:00.000-07:00

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.

Mist in my eyes

2010-09-13T09:07:00.000-07:00

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.

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.

Goodbye Mom

2010-09-10T07:34:00.000-07:00

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.

Under pressure

2010-08-30T13:23:00.000-07:00

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!

The art of insanity

2010-08-23T09:09:00.000-07:00

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.

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

http://www.youtube.com/watch?v=uVu4Me_n91Y

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.

Pics and Vids from the Tetons and Yellowstone

2010-08-06T20:56:00.000-07:00

In the Grand Tetons 7/26

Jenny Lake, Grand Tetons National Forest, campsite First come first serve, and this was the last site at 7:30 am. A nice site with a lot of space. 7/26

Life from death, Jenny Lake

View of Jenny Lake, view to shuttle landing on oppposite side. Landing leads to the Hidden Falls. $10 round trip. I walked.

The valley view from Signal Mountain. As I left the Grand Teton NP, I spotted Signal Mountain and though, maybe I can get a signal on my phone, get some messages and make some calls. Sure enough, there is a cell tower at the top and my phone goes nuts, but also awesome views of the valley and of the Tetons. 7/27

7/27 Signal Mountain Info

Valley view from Signal Mountain

Panorama of the Grand Tetons from Signal Mountain. Left to right

Panorama 2

Panorama 3

Panorama 4

Panorama 5

Panorama 6

Panorama 7

Panorama 8

Snake River Falls 7/28/10

A corkscrew tree 7/28

I really was there 7/28

Bison. Like seeing a cow in Wisconsin 7/28.

Tourists stop in the middle of the road, and run to get a pic of a bison 200 yards away.

Elk 7/28

Elk herd

These shots are in the Old Faithful area

Bizarre Fire Lake Drive landscape 8/1

More Fire Lake Drive

Grant Campground campsite, real nice, lot of room

It's about to rain.

Another Snake River falls. The snake River is everywhere.

Earth Pimple 8/1

Mud Pot

Grand Geyser

Bison herd on the move

Fire Lake Drive

Fire Lake Drive geyser

Old Faithful

Traveling

2010-07-30T15:45:00.000-07:00

Saturday
I drove to Las Vegas, to Fitzgerald’s downtown. The room was only $55, and worth less. I got there about 4pm, and it was boiling hot. It was over 110 going through Mojave. I was hoping to find $2craps and $3 blackjack, like the old cheap days, but everything was $5 limit or higher.

I lost $100 at craps while rolling the dice for ten minutes straight and should have made some money, but I hit nothing for me and everything for all the other players. They all said ‘Wait to roll!’ but I crapped out in the end with nada. I went to the $1/$2 no limit poker tables, played one hand stupid, lost $40 on that, should’ve seen the set, and lost a total of $55. Finally I busted through for $25 at blackjack, woohoo, and was in bed at 11 watching TV.

Sunday
Got up at 4:30, went to find coffee, and it was already 90+. Back to the Fitz and I waited around for the comp breakfast, and boogied at 7:30. Bruce Mundt did me a big favor and marked up all these maps of areas I was going through, and one Postit said check out the town of Mesquite, so I did on the way up. I should have stayed there, rooms (probably cleaner and nicer) for $26 with breakfast, and $2 craps and blackjack. 100 miles closer to my end point.

I was originally shooting for something around Salt Lake City, but didn’t see anything that floated my boat, so I had a note from Bruce about Afton, Wyoming being some great rockhounding, and a campground right there on the river. It’s starting to get dark, and when I find the campground it is closed for a waterworks project. The local cop says I could probably just pull over up the dirt road past the campground, but I have been watching car after car going up that dirt road, so I forego that.

I stop in at one motel that has 20 rooms and 2 cars, and offer them $40 for a room, but no, rooms are $70. Why are small businesses failing? No consideration of variable costs. I call ahead to Jackson Hole, and the Motel 6 is $150, and full. Ditto Motel 8. I drive through Jackson Hole with no plan. About 15 miles outside I spot the Wolf Meadow campground, pull in, and there is nobody there. $15. I set up camp under a 2/3 moon, very bright, and I am asleep by 12. I wake at 5:30, pretty dang cold, maybe 50, make the coffee and skedaddle.

Monday
I get to Jenny Lake Campground in the Grand Tetons at 7:30, and I get the very last campsite. All the camps in Grand Teton are first-come first-serve, but the books stated you had until about 10 at Jenny Lake. I had a real nice site, but it was all the way to the other end of the campground to get to the only bathroom, serving 46 sites.

I set up camp and went on a hike around Jenny Lake, a 7 mile loop on the map, except they didn’t mention the uncrossable stream and extra 1.5 mi. to the bridge around it and back. There is a shuttle that runs across the lake, so that people can make it to the Hidden Falls, so I took the extra mile hike to the falls and then took the shuttle across, rather than the extra 2.5 mile hike. Some times I make a smart decision.

Tuesday
I packed up and left Jenny Lake about 8 in the morning, knowing I had reservations at Bridge Bay in Yellowstone for 2 nights. They pick the site for you, so I could mosey. When I saw the turnoff to Signal Mountain, I had to go to see if I could get a call phone signal. Sure enough there was a cell tower up there, and awesome views of the Tetons and of the valley. I called Dana, took some pics, and hit the road. I should have had about a 1.5 hour drive, with traffic and traffic delays. Unfortunately, all systems failed. There were no signs to Bridger Bay until I was 2 miles away. I was using a fairly vague map. Mrs. Garmin was mystified by the whole deal, and never did find Bridger Bay, and took me the whole loop almost to the West entrance.

In addition, there is a lot of road construction going on, and long delays. I suppose they have a very limited time to get it all done. I found Bridger Bay 3.5 hours later. They had selected a site for me in full sun, and I had to pull out all stops to get a move to partial shade. That site was OK, on the edge of the woods, but the wind was howling like mad. 20 lb. rocks could not hold down the tablecloth. I managed to set up a tent, and then headed out exploring the area.

At the store I bought a $1.30 ice cream, but the bank denied my debit card, probably because I hadn’t used it in a long time, maybe only once. The store took Amex. I went to the Lake Hotel nearby, hoping for an ATM and wifi. No wifi, but they have an ATM. Nice hotel, and I sat in the lobby using their power on this old junky laptop, and then went to use the ATM. Without glasses on I mistook a slot for the card entry, and watched in horror as it dropped into the guts of the machine. It was after 6, and the accounting staff with the keys had left. I came back in the morning, and now I have some cash.

I made dinner and had a small fire. I bought a nice loaf of Rosemary/Basil bread at Costco before I left, and it was in a Ziploc freezer bag, which fell in the ice melt water, just as in Ashland. This time instead of tossing it, 1/3rd was salvageable right away, and the rest I tried to dry out. I tried the dashboard of my car with the sun baking in, and then the fire, and ate it last night toasted with some sausage. I didn’t get sick.

Wednesday
I headed north to terrain that Donald and I had covered last year. I was targeting the Petrified Tree (only one, not a forest), thinking I would make a picnic and hike off trail and maybe find some other cobbles or petrified wood. I headed out on this trail to Lost Lake, only 1.1 miles. It should have been called Horsefly lake. They were on to me, ate DEET for a snack, and were relentless.

I finished my lunch quickly and kept going to see the end of this small lake. I came to a sign that said ‘Lodge, .6 miles.’ This started out descending pretty quickly, but my brain was not working, and I kept going down. About ½ way down I realized I was never going to make it back up. I was a week past the last chemo, i.e. nadir, and not feeling great. So I kept going, thinking I will rest at the lodge, have a coffee, and see if there is a shuttle. As I descend I am thinking this is far more than .6 miles, and at the end the sign says ‘Lost Lake .8 miles.’ So it is getting worse, and the sign guy can’t count, so who knows?

There is no shuttle, and the guy at the desk says my option is to hike back. I get a Starbucks in a bottle, and go to sit on one of the rockers on the patio, thinking somehow I will bum a ride. There are no rockers available, but just then 2 couples come out of the lodge, and I ask them ‘You wouldn’t be going to the Petrified Tree, would you?’ Miraculously, they are, and after I relate my tale of woe, they agree to give me a ride. The wives stay behind and shop some more, and Jim and Steve from Indianapolis save my sorry butt. We go look at the tree and they agree the wives wouldn’t be very interested anyhow. Thank you Jim and Steve.

I mosey down to Mount Washburn, where you may see grizzlies and other wildlife in the valley to the side. What I don’t learn until I get there at 4pm, is that there is a 1400’ ascent, and you need 4-5 hours to do it. I surrender after 500’, and realize any respectable grizzly won’t come out until 6 or so anyway. As I get back in the car, I hear thunder and see lightning, and then the rain starts as I drive away. This ends within twenty minutes. I take my time heading back, knowing the road construction ends at 5.

The thing in Yellowstone is that people will stop in the road and make traffic jams to look at bison, elk, or a brown spot on a hill ½ mile away. You have to go with it, and expect people to walk in front of you, and pull out right in front of you, and do stupid things. I am trying to quit swearing because I realized it was raising my anger levels, so this is a good challenge. I smile and look at the brown speck in the distance, and take my time. What is my hurry?

It turns out that when I get back to my camp and start pulling out all the makings for grilled cheese/turkey and salad, that storm has moved south and is charging at me. Everything goes back in the car, and it starts raining. So here I am back in the Lake Lodge, where I just finished a salad with pistachios and strawberries, and sliders of antelope, bison and elk, all farm raised.

These probably lost a lot of flavor as burgers and would have been better as small steaks. The antelope and bison were indistinguishable, and the elk was good, maybe cooked better, not well done. It may still be raining out, so I am typing this travelogue hoping it is done and the tent remained waterproof.

Thursday
The rain was not done, but the tent remained dry. Today became maintenance day. I made my coffee at 6am, had some cereal, toweled off the tent, and then packed up the tent and Astroturf wet. I skedaddled to Grant Campground, hoping for a good site for my 5-day stay. I had stopped there 3 days ago on my way to Bridge Bay, and pleaded for a nice site. The way Xanterra reserves site is by how early you reserve if you request a certain site. They then look at how many nights, how big a site, and how many people. Sp while Bridge Bay kind of sucked, the F loop was awesome with nice sites and views of the lake.

They did me right here at Grant, and I have a great site on the edge of the woods, a big site where I can put the tent away from the generators of the people next door. They were still in their RV at 11am with the generator going. I set up lines to dry the tent, and tore the car apart and reorganized it. I also scrounged up all the wet wood left behind, and have a big pile drying in the sun. I am now at the Laundromat, where I threw in a load and then took a much-needed shower. I am typing this while the clothes dry.

I never want to do laundry while on a vacation, but things happen. I went to Mike’s Shoes before I left, hoping to find something sturdier than my trainers, and lighter than my Ecco boots. Eccos are always nice, but $200. I found this nice pair of Ecco hikers on the clearance shelf, ½ off $125, then another 25% off. $45! Now the shoes of choice. The only problem is I only have 4 pairs of socks that work with them, and they were running around the car and tent in the night. So, I am doing laundry. Maintenance day. I need to get back to my site, make a salad for lunch, put up the tent, and then head out to see if I can spot some bears.

I see in the newspaper that a man was killed in a campground just NE of Yellowstone, and 2 others were attacked. Scary. No food storage issues involved either.

Friday
It was 40 degrees when I woke at 6, so I just made coffee and headed for the Grant restaurant. I ordered the buffet, sat at a window table with the sun beating on my back, and had a huge breakfast. Used all the facilities, and then headed to the Old Faithful area. The hiking around there is pretty simple, and I saw Old Faithful pretty quickly, and then waited for Grand Geyser for 2 hours, but it was worth it. Saw Riverside Geyser, and then at the end of the hike Old Faithful went again. Almost unfortunate, as this put me in a big stream of people heading out. It took me a half hour to get ice for my cooler, and then get here to Old Faithful Snow Lodge, the only wifi access in the park. I am going to post this now, and go see some further geysers.

I am feeling quite weak, in nadir from last week's chemo, and n o steroids today. I trudged along and it is now almost 7pm, and I got here at 9am. Oh well, I am not in a hurry. Pics will have to follow later as I have no cables.

Bardin' Us

2010-07-18T09:13:00.000-07:00

Just a quick campground update - Mike and I are leaving Ashland in an hour or so, I think headed for Coos Bay. We saw Twelfth Night last night in the open air theater, great time, and we saw American Night yesterday afternoon. It was hilarious, about a man that will take his American citizenship test in the morning and dreams all night. We saw Pride and Prejudice Friday night, and what I saw of it was very good, half of act 1 and all of act 2. I had terrible gerd, acid reflux, all day Friday, I think from drinking ginger ale Thurs. night. By the time I got to the theater I was wiped out, and P&P is heavy dialogue. The espresso chocolate bar I ate at intermission snapped me to life, but the first act I was doing the dip and nod.

Water, water, water. Ashland is hot, 95 in the day, but the campground is cooler down by the creek. We are having a grand time. Mike sings almost non-stop, not loud, and I talk to myself out loud, so we make good travelling partners.

Bumpass Hell area of Lassen Volcano Park

Mike finds home in Ashland at the OSF

Campsite outside Ashland

Mt. Shasta in the distance as we head north

Mike getting blown away by the Oregon Coast - Gold Beach

The campground we stayed in Sunday night, HumBub, was too close to the highway. We got tired of making and breaking camp, and agreed to head for home next day. We got here in SLO last night at about 9pm after a 12 hour drive. Generally a great trip not wrecked by pushing for more camping.

Thanks Terri

2010-07-14T05:29:00.000-07:00

Cheryl starts the fruit and veg fest

Big Bear Lake was a good trip. I got up to the cabin in Fawnskin, which is the north and far less populous side of the lake. The cabin Terri G. let me use was the original post office, right on Main St. and built around 1870 (the front room). Her family owned this place when she was a kid, and she was renting it for a few months for old-time sakes. It seems the whole of Main Street is for sale, business is dying as the economy worsens.

When I arrived Wed. night, the Garmin led me all over Fawnskin, and I had to call Terri to guide me in, and it was right there in front of me. Listening skills. I opened up the cabin and was greeted by the smell of 70,000 Vegas smoking rooms. Ho-dang. It was a challenge to open 140 year-old windows in the front, but I got it done. Turned on the ceiling fans, lit a candle, and it started to clear up. The place was clean, but the old carpet and furniture had really soaked up the smell.

The front room was set up as a parlor/bedroom, with a queen bed, so I slept there the first night since it was already midnight, and then moved to the added on BR in the back and gave Frank and Cheryl the double. The front room had aired out pretty good when they arrived on Thursday, and I had a fold out air bed for my room, so it was all comfy. Good bathroom, kitchen, everything we needed, and we settled in. Met all the locals, got fishing permits and dropped a line down the street, traded laughs with the fish, went touring the local scenery, and ate.

The deal was supposed to be that I would bring all the groceries, and I did. But, when F&C arrived, they had stopped at some grocery that had great deals on vegetables, and Cheryl had these giant grocery bags packed with stuff. The refrigerator and freezer were stuffed to the gills. This picture shows how it was on Saturday night, after 3 days of salads, roasted veggies, desserts of strawberries, canteloupe, yogurt and granola. Man, we tested that plumbing!

We had a great time, eating and yakking and pooping, and Frank and I rented a canoe and had deeper fish tell us jokes, ha ha. I should have taken some pics, and Frank will undoubtedly send me some of his, which I will add. I am searching for the local Indian tribe in Big Bear, the Serranos, and some investors, to buy, rebuild and open the Fawn Lodge as the Serrano Casino. A few tens of millions will get it done. Who is in?

I had to get back here for an appointment with the Social Security people on Monday afternoon, but they called me and postponed it until the 23rd. So today son Mike and I are leaving for the Oregon Shakespeare Festival in Ashland, stopping tonight to camp at Lassen Volcano National Park (hopefully), about 7 hours, then 3-4 hours to Glenyan Campground in Ashland, 4 miles outside of town, on the river in the shade. It is going to be hot. High end campground with lots of facilities. We have the last 2 tickets to Pride & Prejudice on Friday night, up close but to the side, and center balcony seats Saturday night for Twelfth Night. This is a renowned festival, big doings for a city of 20K people, and lots going on.

On Sunday we will break camp and mosey down the Oregon and CA coast, serendipitous to some extent, and get back Wednesday. Chemo on Thursday, Social Security on Friday.

Healthwise, my platelets are 1/3rd what they should be, so anything I bang into leaves a purple mark for 2 weeks, and I am a spaz with no balance. I look like Chinese cabbage, and my ankles are spilling over my socks, like my grandma's used to. Slightly anemic, and cutting back on prednisone to 2.5 every other day. I have a little nadir going right now, very mild, no nausea, just bedraggled, perfect for a 3:30 am wakeup and 7 hour drive. We won't leave until Mike wakes up at 8 or later, and I have stuff to do anyway.

Everybody stay cool out there.

the finger
by Charles Bukowski

the drivers of automobiles
have very little recourse or
originality.
when upset with
another
driver
they often give him the
FINGER.

I have seen two adult
men
florid of face
driving along
giving each other the
FINGER.

well, we all know what
this means, it's no
secret.

still, this gesture is
so overused it has
lost most of its
impact.

some of the men who give
the FINGER are captains of
industry, city councilmen,
insurance adjusters,
accountants and/or the just plain
unemployed.
no matter.
it is their favorite
response.

people will never admit
that they drive
badly.

the FINGER is their
reply.

I see grown men
FINGERING each other
throughout the day.

it gives me pause.
when I consider
the state of our cities,
the state of our states,
the state of our country,
I begin to
understand.

the FINGER is a mind-
set.
we are the FINGERERS.
we give it
to each other.
we give it coming and
going.
we don't know how
else to respond.

what a hell of a way
to not
live.

A regular guy

2010-06-30T06:06:00.000-07:00

Things are flowing along just fine these days. I started walking regularly, a little over a mile a day, and I have been active around the house. I even went to the driving range on Monday, first time in six months. I didn't swing hard, since I have no left hip, but just tried to stay balanced, and it went well. So, no hip turn, shorter distance, but who cares? I see a twilight round in my future.

I am getting chemo as described before, every ten days. We have dropped the vincristine because of the stomach problems it causes, and the neuropathy has spread in my hands and feet. I couldn't type before, and now, sheesh. Otherwise, not much negative effect, mild nadir around days 4-6 after the chemo, like today and yesterday, for a few days, just feeling a little low energy and stomach ache. My legs are feeling the effects of adding walking, and with Metamucil every night, I am as regular as the sunrise.

Dana and Stacy are at the world's happiest place, Disneyland. They went down yesterday, coming back today. I am spending my days just puttering around, driving Dana nuts, moving stuff around. I have spent a little time working on the blog-to-book project, but not nearly enough. It seems too daunting. I am hoping to go spend 4-5 days with my brother at Big Bear lake, in a cabin a friend of mine has offered us to use there. That would be right after chemo in the 7th, coming back the 11th. I have to be back for an appointment with Social Security, very important.

So that's the nut of it. I am actually considering putting on the wet suit and flailing in the ocean, we'll see. Maybe just with a boogie board, because I don't think I could motor my surfboard for more than 15 minutes. I might drown trying.

I forgot to add this poem:

Gathering

I am gathering things,
living things,
bribing them to come closer
with seeds and nuts,
asking them with food and water to open to me,
begging them to show their beauty,
to display their force of life
so that I can breathe it, see it, feel it,
gather it into my arms and my mind.
I walk the dog and smell the roses,
the orange-reds and pinks are best,
and the honeysuckle melts me,
and I hold those scents of Eden in my mind.
The flowers are a glorious palette,
every color I ever wanted to be,
rainbows scattered in my garden.
All this life force can’t sustain me, I know,
but it charms me so that I
feel less pain, and I step outside myself.

I sleep with the window open
and the fan on, and hear the sound
of water rushing down the street as the
neighbor’s irrigation leaks,
and I am by a river in the Sierras,
wind rushing in my tent,
nestling in my bag,
sleeping the sleep of the healthy wanderer.
When the steroids wake me too soon,
I rise back to reality, ready or not
to greet the day, thank the world
for another day, to gather beauty and breath.

Obstructed

2010-06-20T15:06:00.000-07:00

Writing this Saturday morning:
Here I am in the hospital again, French Hospital. I’ve been here since Monday night, and now it’s Saturday morning. I have a bowel obstruction that won’t resolve. This is amazing to me, but I brought it on myself, I think.

After receiving methotrexate on June 4, I was to follow with dexamethasone for a week. I realized on Monday the 14th, as I was getting ready for my next dose of methotrexate, that I had continued the dexamethasone all along. I had been constipated since Friday, and when I mentioned this to the doctor he said I had constipated myself with the decamethasone and the vincristine.

So he sent me home to treat first the top down, with Miralax. One dose should do but use up to 4. If that does nothing, then start working from the bottom up. The Miralax did nothing, so I went and bought Fleet enemas. My body absorbed the first one no problem, nothing ever came out. The second met with similar results, very little action.

Meanwhile, mind you, I had stopped eating anything around Sunday afternoon, and was getting pretty hungry and swollen. Dana wanted to know what trips I would like to go on over summer vacation, and all I could think of was Old Faithful or maybe a gas extrusion lab. I called doc and he suggested stool softener, Colace, and that said if it didn’t would in a couple of hours, I needed to get to the ER for Xrays.

So Monday night I went into ER, very quiet there, and they took some pictures and sure enough I am obstructed. They inserted this horrible tube thing down my nose to drain anything they could, and put me in the middle bed in a room. On my left was a dementia patient, and he was screaming in pain, at times coherently. He had a 24 hour caregiver, big guy. He would then calm down and ask crazy questions, and try to leave his bed. His caregiver spoke in a loud and firm voice, and their TV blared. On my right was a man sleeping and snoring like no other. He was a hurricane, a vortex, sucking all the air in the room and expelling it with huge force. He did this for 23 hours straight, only waking to incoherently answer some question.

I had reached insanity. In the middle of the night I called the nurse and asked to be discharged, and told her the pain I was having was better resolved at home. I demanded the head nurse, and when she came she was angry, telling me I could not drain this obstruction if I left. I decided to tough it out with the promise of better digs the next day.

So the sleeper left and I took his spot, where there was a TV and I could watch the fix known as NBA complete its debacle. Right across from this room is the nurse’s station, so they put all the trouble patients in this room for easy access. I’d like to think I was there only because it was the last room. The demented man was still there, being demented, so I asked for a quiet room at the end, and that’s where I am now.

It’ 6:00 in the morning, and I had a great night sleep. There is a man in the other bed, sleeping quietly. I will be going in for another x-ray soon, to see if this obstruction is moving. I get broth, jello, juice, more juice and tea and sherbet at meals. I drink it all, bloat for a while, then that all absorbs. The last food I had was Sunday night I think. I am hungry.

Sunday afternoon, I am home. The obstruction is gone, and I feel much better, but I weigh about 152. Very weak, so I have to get back to a walking regimen, and some small weights, just like Bill says. I really feel like it has been taken out of me this time, it was just so unexpected to have to stay in the hospital another week. Oh well, life goes on.

Just checking in

2010-06-14T06:06:00.001-07:00

There hasn't been much to say. I have been going through that low-spot of nadir, but not nearly as bad as in the past. Instead of sore cheeks I have a sore tongue, and couldn't even eat a banana last week. It is much resolved now. Of course, with the renewed steroids, I haven't crapped in 3 days and getting a little antsy. Pounding the fiber and liquids, and the basketball in my gut will be used at the Celtics victory game on Tuesday.

The chowderheads (Mike B, Jack L) have been getting together for games and cooking great meals - last night was lasagna with ahi-ahi, garlic bread and super fresh salad from Sue's garden. Steaks and rice with salad the game before. As long as we eat well, the Celtics WIN!

Downside of course is with no pooping and lots of eating, I am really sore and can barely move. I am very unmotivated to do anything these days, sleeping very poorly, 4-5 hours thanks to steroids. Dana is improving a little, and looking forward to the end of school.

When I go in to see the doctor today, I will ask him how much travelling I can take on. I am guessing small 3-4 day trips are feasible, as the week I get the chemo isn't bad, but then nadir the following week sucks a little. I will get chemo today and tomorrow. This morning young John and I will do some housecleaning, hah, if he wakes before noon. Really busy days.

It has become very hazy in my head, to see what I am fighting for any more. I never actually feel any better, just degrees of lousy. I bring the dog to the park and scan the hills for all the beauty I can find, and listen to the kids playing, and somehow it is enough for another day. It's as though I had this giant plastic cup when I started in life, and each time I drank from it the rim wore down a little, and so now it is only a small cup but only needs a little joy to sustain me.

HAPPY BIRTHDAY PAT! Man, to be 39 again.

Love the polar drugs, and Eskimo Pie

2010-06-04T16:36:00.000-07:00

I started my chemo routine yesterday, and here is what it looks like:
Started with some anti-nausea, not sure what, similar to Zofran.
Methotrexate, 190 mg. I will get this dose every 10 days. Not too daunting. I received 6000 mg 3 weeks ago in the hosp.
Cytarabine, 142.5 mg. I will get this dose every 10 days. Again, not bad. I received 24,000 mg 3 weeks ago in the hosp, over 4 doses.
Today I received Vincristine, 2 mg. I get that with Asparaginase in 2 weeks. I was supposed to get Asparaginase now, but they make very little of it and we can't find any. I had Vincristine to start every month in '05-'07, nicknamed 'numbmeup' for its neuropathic side effect. Made from Periwinkle. Good excuse for the dropsies.
Leukovorin 4x daily to wipe away the Methotrexate. Without this, the methotrexate will eat away the bone marrow.
Dexamethasone, a steroid, 10 mg/day, on top of the prednisone (5 mg/day). So my hip may feel better soon, and my Tourette's Syndrome will be &*%&*%&ing free to roam. Asshole.
Prosiconazole to fight the lung infection, 5 mg liquid 3x/day
Acyclovir to fight infection
Dapsone to fight lung infection (that didn't work)
Prograf to dampen immune system.

So there it is, nothing new under the IV, different doses is all. Not much in the way of side effects yet, a little hormone rage maybe because the simplest task is not simple. Low point will come in a week, so we'll see how low I go.

What is really annoying now is that Dana is having bad headaches, going on 2 weeks straight now. CT scans show nothing, blood tests show nothing, anti-allergens aren't helping, migraine meds aren't helping. This does coincide with when I came back from the hospital, and lingered as Johno moved back, so ...........

Now as far as loving all the polar bears, as avatars for humans, I congratulate Earl on this ability. Everyone loves him, so it makes sense. Unfortunately, I see polar bears in the gulf, shitting all over the place. I see them starting stupid wars, for whatever stupid reasons, and leaving stinking piles for the rest of us to clean up. They want all the other bears locked up, but don't want to pay for it.

They are running scam campaigns here, throwing corporate money at propositions designed to give corporations monopolistic power, and all the people can see is the sleight of hand. I cannot love and value everyone; I am compelled to call out an amoral scumbag when I see one, especially when they are trying to hide behind the flag and the church.

The polar bears are just being polar bears, I agree, and I do love them. It's too bad we can't stop destroying their environment. Some day, we will only see them behind Lexan walls. I love and value this earth, and Earl and Pat and many other humans, but God save us from ourselves and our greed.

The Neocon in me

2010-06-02T07:29:00.001-07:00

I drove up to Berkeley on Saturday and packed up young John's stuff, as he is moving home for the summer. We then moved his girlfriend to an apartment in Oakland, just a step up from some cardboard boxes in an alley, but inexpensive. Her parents were there to move her, and they took her over to the Big 5 and got her loaded up with some weaponry, and then on to the hardware for deadbolts and padlocks. She'll be OK, what could happen in a bad section of Oakland in the summer? John and I headed back to SLO. For a couple of nights, the whole family was back together. I tried hard not to fall into old roles, and mostly succeeded. I do not need to be Alpha any more (right!).

Mikey moved out yesterday, down to Santa Maria where he goes to school, 25 miles south. This meant he loaded up his car with a few items and headed out to a meeting at school at 8am, and young John and I loaded the wagon with everything else, such as the bed, desk, dresser, clothes, etc. He left his room, now John's room, in a terrible state, his junk everywhere. It will all get shoveled into a box for his supposed return in August.Of course, when he was leaving in the morning, both his mom and I had tears in our eyes as our youngest left the nest. This was somewhat tempered by the fact that his older brother was sleeping in the family room at that moment.

As part of the process of getting him off on the right foot, I went to Costco to stock him up with some things. I figured I could get stuff both households needed and split them. Every time I go to Costco, I am struck by the largeness of the average American. At Costco, they are massive, and they are buying massive amounts of stuff. So I get a mass of stuff and get in line. Usually lines at the Costco register are pretty quick, but I am not lucky in selecting lines.

I get behind this 30-something lady and then realize she has two fully loaded carts. OK, no hurry, John isn't ready to go to Santa Maria with all Mike's stuff. She gets all $400 worth of her stuff rung up, and says to the guy, 'Oh, there are seven in our family.' Right away my hackles go up. I think, just like Groucho said, 'I like my cigar too, but I take it out of my mouth once in a while.' The card she hands the cashier doesn't work, and she says, 'Well it's food stamps, and I know there is over $700 on it. Things are tough right now.' While saying this, she spills her Starbucks coffee all over the aisle.

What was shocking to me was, I caught myself thinking like Glen Beck or Rush Limbaugh, jumping to all these conclusions about this person that I didn't know anything about. It was so easy just to let my mind run with it. Finally, though, I caught up with myself. Who knows who she is caring for, and what she has been through? The whole moment reminded me that there is a prejudiced, bigoted jerk inside me, and that it needs to stay there.

I never did post what I had decided to do about choosing between a long shot at more years, or a sure shot at 1-2 years. I really cannot see taking a wild swing at 10 years, and ending up either dead after a short hospital stay, or a long hospital stay and then dead. Instead, I am opting for a maintenance chemo routine that should give me 1-2 years, and hopefully the research will continue to advance and I can keep advancing with it. All in all a tough decision, but the Magic 8 Ball is usually right, and best out of 3 coin flips sealed it.

The fungus in my lungus is not going away, in fact it is getting a little colonial, so today I switch meds from voriconazole (VFend) to prosaconazole (Noxafil). Anthem Blue Cross was dragging their feet on the new med until they realized each was $3K/month, so what diff. Noxafil is a slightly broader spectrum. I should also start this new chemo routine today, patience, patients, patience is a virtue. In general, I feel like any 56-year old with no left hip, a lung infection and a decaying muscular condition would feel. Happy to be here smelling the roses.

Patience, patience

2010-05-25T16:52:00.001-07:00

It is so hard to be patient, we always want to get going, get to the next thing. I sit in movies and other performances just wishing they were over, even when I am enjoying the show, but for what reason? I am going nowhere, so I remind myself to be in the now.

Last week, I think Thursday, I got a call from the doc's office telling me to get to French Hospital Radiology and they can get this CT scan done, so I go right away, get there at 2:07. And I wait, and wait, and wait, and finally they come in at 3:45 with 1.5 liters of dye I have to drink first, and they put in an IV line for the other dye that gets injected. I have to wait an hour after I drink the Super Slurpee, which is not slurpy, so chug-a-lug, bug.

Not bad but not tasty. The first half liter goes quick, but then my guts are in protest. I haven't eaten lunch, since I raced over for the test. Anyways, I get out of there around 5:15, stop at Subway, and fill the dead hole in my gullet. I have lost 15 pounds in the last 6 weeks, back down to 160, and losing a lot of muscle. I am such a lump. Typing this is tiring me out.

So I am a patient, and I must be patient. At least I always have something to read, and my phone can entertain me, it is so smart! Sometimes I try to get my hands on the remote for the waiting room TV, sometimes I do get it. The world of being a patient is not like reality. You hold no cards, and complaining will slow it all down. Now I am waiting for the results of that CT scan, and what it will tell us about the next steps. I am staying in my seat, nibbling rubbery popcorn, while the credits roll. I try to pronounce the names of the best boys and their buddies.

The Writing Through Cancer prompt this week was to write about the worlds we move in and out of, so I wrote this:

Worlds

The worlds that I live in
all have a place in my galaxy,
in my universe.
In my yard is a world of flowers and birds,
roses and gardenias.
The pink roses are their own little worlds,
smelling like a sorority house on Friday night,
like sirens of the garden.
My wife is my most special world;
her atmosphere is all I need,
she is all pink roses and fresia and honeysuckle,
drawing me into orbit about her.
My house is a world of puttering,
of fixing things, of gluing and cleaning
and making everything right.
When I head out my driveway I enter
a world of near chaos, barely kept alive
by the rules of the road,
all these asteroids of karma and aura
colliding in space.
When I enter the hospital world I
gird my loins, gear for battle.
In this world I must be most careful,
to protect what is left of me, my essence,
and not get lost in the pain and the
knowledege of what is to come.
Billions of galaxies, countless planets,
God everywhere, all-knowing, all-powerful,
worlds of worlds.
If energy cannot be created or destroyed,
when I leave these close-by worlds,
my essence will experience the
worlds beyond, no longer constrained by
worlds of hunger, thirst, love and pain.

So everyone be patient, be here now, enjoy this day in spite of the pain.

What I've Learned

2010-05-20T11:33:00.000-07:00

They run this series in Esquire magazine called 'What I've Learned.' It is my favorite recurring article. One issue of the magazine was filled with 'What I've Learneds'. These are from a wide variety of people, star and non-stars, and are always entertaining and enlightening. The archive is here:
http://www.esquire.com/search/fast_search?search_term=what%20i%27ve%20learned&click=try&srchtyp=system&link=whativelearned-try

So I thought I would try to figure out what I've learned. With all this chemo hammering away at me for 5 years, I should've written 'What I Forgot,', but that is too hard, and ongoing to boot. I hope I am still learning, but here is what I have:

What I’ve Learned: John Fiore Ill at ease, 55, San Luis Obispo

· Learn how to deal with your anger and save yourself a lot of misery.
· If you have a problem, admit it, then you can start to fix it.
· Never smoke that first cigarette.
· Love your country; fear your government.
· Get in on the ground floor of a new business if you can. If the company has a good idea, take stock options in lieu of salary.
· Work at what you love, forget about the money.
· You can fix many appliance breakdowns yourself with a simple part. The people at the parts store can guide you, and the internet can help quite a bit.
· Read the manual.
· Tell your wife how beautiful she is every day, and how much you love her.
· The egg came first. The hen was almost a chicken, but the egg had a mutation that was the next step to what we genetically define as a chicken.
· Shit doesn’t just happen; you have to eat first. So watch what you eat.
· Forgive your parents for their mistakes, and make fewer of them yourself.
· It doesn’t hurt to ask.
· It’s OK to have crazy thoughts, as long as you recognize they are crazy and let them slip out of your mind.
· Most drivers are distracted. Watch out.
· You can’t judge a book by its cover, or by its author for that matter.
· You have to laugh at yourself when you screw up. Just don’t screw up too often.
· When you are really tempted to violate a major trust, remember your core values. Realize what will be lost if you choose 15 minutes of fun over a lifetime of love.
· The more friends you have, the more hands there will be to lift you up when you need lifting.
· Tell your kids that you love them, unconditionally. Hug them and encourage them to follow their dream.
· The most painful thing you can endure, physically, is second-degree burns.
· We all will die eventually, so find a way to face death without fear. Don’t dwell on death, but enjoy each day as best you can.
· Cherish the ones you cherish.
· Offer support when you can and it will come back to you when you need it.
· Tamp down the ego; listen more and talk less. Be interested in other people’s stories. · Driving is an act of faith, faith in the other drivers.
· Music lightens the soul.
· People are very diverse in how they perceive the world. Very few things are black or white, so don’t assume what you see and believe is the same as what others see and believe. Respect other viewpoints.
· Blood is thicker than water.
· In the end, all your physical beauty and prowess will leave you. You must still love that person in the mirror.
· Travel light.
· Being a savant at Jumble is worthless if you can’t get on Wheel of Fortune.
· Do what the doctors tell you.

God

2010-05-16T11:42:00.000-07:00

‘God is a concept by which we measure our pain.’ John Lennon

Lennon explained to Rolling Stone that, "pain is the pain we go through all the time," Then added: "You're born in pain. Pain is what we are in most of the time, and I think that the bigger the pain, the more God you look for." Maybe he was right, because I have been thinking about God much more in the last 8 months, trying to reconcile how I felt about God concepts.

I woke up early this morning, and I was tossing around all that I don’t know and can never know about God. Many, many people have offered to pray with me, to offer up their connectivity to God, in an effort to heal me. My brother has enlisted thousands of Hispanic women in southern New Mexico to pray for me, and my Mom has her entire condo complex and her church praying for me. Many of my friends and supporters are praying for my return to health, and I am happy they are all doing so. I feel supported and loved.

In one study reported in the New York Times, being prayed for by strangers made you less healthy.
http://www.nytimes.com/2006/03/31/health/31pray.html?_r=1&ei=5070&en=2d2202b52abff4f4&ex=1143954000&pagewanted=print
I do not believe strangers can harm someone by praying for them, but more that the unhealthy person being prayed for feels unhealthier because so many people are praying for them, therefore they are really sick.

I am not a religious person, and I do not intend to offend any of you that are. My concept of God is of an all-knowing, all-powerful and all-present entity, within me, within you, within everything. An incomprehensible entity. When I pray to God, I am asking for the God within me to help me face my fears and guide me in my choices.

I have met people on this journey that seemed to be more connected to God, something in their aura, their empathy. A few were religious, others not. The local chaplain came in when I first went into the hospital recently, and said that he saw I had stated ‘no religion.’ He asked if I was atheist, and I said no, only spiritual. He told me I was agnostic, and that meant I was without knowledge, as ‘gnos’ is the latin root for knowledge. I suppose he is correct, except he said it meant I had no knowledge of Christ.

According to Wikipedia:
Agnosticism is the view that the truth value of certain claims—especially claims about the existence or non-existence of any deity, but also other religious and metaphysical claims—is unknown or unknowable.

Gnosticism (Greek: γνῶσις gnōsis, knowledge) refers to diverse, syncretistic religious movements in antiquity consisting of various belief systems generally united in the teaching that the cosmos was created by an imperfect god, the demiurge with some of the supreme God's pneuma; this being is frequently identified with the Abrahamic God, (as opposed to the Gospel according to the Hebrews)

So given that I cannot conceive of an imperfect God, if you must categorize me, call me agnostic. The chaplain also told me that of the major religions, Christianity was the one that offered hope, because they have never found the body of Christ, therefore he still walks among us. I find it hard to believe that in these times, Christ has not spoken up. The chaplain left me with the feeling that he was trying to win an argument, and I disappointed him by not engaging. I did not get any feeling from him that he cared about my soul.

I have met people on this journey that seemed to hold a special connection to the God within us and around us, who had an aura of empathy and of caring. When I was in the hospital a few weeks ago, I had a nurse that was very efficient and very soft-spoken. She knew that I was struggling with my illness, and one morning around 3am she came to take vitals, and I was awake. When she finished her tasks she asked, ‘Will you pray with me?’ I said yes, and she took my hand in hers, and I prayed, ‘God, please grant us the wisdom to save our earth from the ravages of man, to save people from themselves.’ Or something like that. I looked at her and thought, ‘She is an angel!’ She was very beautiful, perfect in every way, Filipina, with hair like silk and tawny skin, almond eyes. In her accented English, she prayed for my healing, and for a place for me in heaven, and closed with an Our Father. I tried to remember that prayer, and mostly succeeded.

When she left I felt she had helped me open the lines to the God within me. I have met other people like her, that seem more connected, and some of those I have met are religious people. The problem I have with religion is not with individuals, it is with a religion’s belief systems. Go forth and multiply; ignore the impact on your planet.

Historically, religion has caused, and still causes, great pain and suffering worldwide. The great religions seem locked in a war to conquer the earth for their belief system, by spreading their word over other words, by killing indigenous peoples with disease, by crusades and inquisitions, by outright wars. When our Christian president declared war on Iraq, based on incorrect information that there were WMDs and a link to Al Qaeda, he ignored ‘Thou shalt not kill.’ He opened Pandora’s Box, and now the Sunnis and the Shiites are killing each other for their religions. The Jewish people have been put through all sorts of misery for their beliefs.

There have been seven years without war worldwide in the last 2000. These wars are fought for property, domination and religion. So I am unable to embrace any religion, but rather just to embrace God as I know God, omniscient, omnipresent, omnipotent, incomprehensible. I thank God for this fabulous planet and this great life, and pray that we don’t destroy it. God created this fantastic universe, with billions of galaxies, trillions of solar systems, and we are supposed to evolve gracefully here on earth, but are struggling. Pray for mankind to wake up and stop the destruction.

Imagine by John Lennon

Imagine there's no Heaven
It's easy if you try
No hell below us
Above us only sky
Imagine all the people
Living for today

Imagine there's no countries
It isn't hard to do
Nothing to kill or die for
And no religion too
Imagine all the people
Living life in peace

You may say that I'm a dreamer
But I'm not the only one
I hope someday you'll join us
And the world will be as one

Imagine no possessions
I wonder if you can
No need for greed or hunger
A brotherhood of man
Imagine all the people
Sharing all the world

You may say that I'm a dreamer
But I'm not the only one
I hope someday you'll join us
And the world will live as one

I wrote all that yesterday, and now it is Sunday. I ran a nice fever of 100.8 and had chills last night, and have chills now even though it is 72 degrees in here. I am so weak I can barely get off the toilet. That doesn't matter, par for the course (of chemo), because the Celtics are playing in Orlando in one hour. Go Celtics!

Tunnels of Cu Chi

2010-05-13T17:56:00.000-07:00

Remember Vietnam, when we would kill a whole bunch of VC, but then a whole bunch more would crop up a little later? And we kept saying, ‘We’re winning, we’re winning!’ I am Vietnam, and the leukemia in my body is the VC. Sure, we won the battle at the Pancreas, but the problem is the VC are hiding, they are in tunnels, staying safe from chemo and radiation until the battle passes over, they hide in my brain and in my testes. And they looked just like the villagers, which played on our minds.

They are prepping their weapons with new protein coats to camouflage them from our attacks. As many aerial photos as we take showing there are no VC, they are there, waiting in the tunnels. I know we all wanted to celebrate that unexpected victory when leukemia disappeared from my pancreas, and it was elating, but now we have to march back to the front.

All my counts are good right now, slightly anemic. I met with my doc yesterday, to formulate a plan of attack, or the leukemia will be back in 6 months or so. There are essentially two options, neither all that tasty.

Option 1:
Embark on Donor Leukocyte Infusion. Fly Lisa out to Stanford, extract leukocytes (WBCs), and infuse them into me.
Pros
· If DLI works, we have long-term success. Odds are 10% that it will work.
Cons
· <10% chance of success
· At Stanford maybe long-term with complications
· “50% chance of post DLI acute GVHD (bad enough gvhd to warrant admission for nutritional support and skin care ...and high dose steroids and other meds etc.. of which many patients die)” doc
· If the DLI is too low a dose then it is a waste of time
· “Little Graft Versus Leukemia from DLI with acute lymphoblastic leukemia”
· “Tough call on what to do: the odds favor medical complications without much chance for benefit.” Doc

Option 2:
Aggressive chemotherapy first week of month, then three weeks of maintenance, ad continuum. This will give me maybe two years and become increasingly ineffective.
Pros
· Buys time, maybe one, outside chance for two years before leukemia kills me
· I can stay home
Cons
· Effects of chemo
· Possible hospital time
· 20% gvhd

In essence, do I take a 10% chance at long-term (1-10+ years) with a 10% chance of death, or do I muddle along with chemo and hope that in the next two years we have more cures (stem cells maybe)?

What a quandary, and I must decide by Monday; time is slipping and the enemy is in their tunnels prepping. I just talked to the doctor at Stanford to clarify a few things, and he had never seen a successful DLI with ALL, and said many hospitals won’t try it because it doesn’t work and leaves the patient in the hospital and then they die. At the end of our conversation I told him I was leaning toward the chemo route. He said that was a heroic decision but a good one, the DLI route is such a long shot with ALL.

So I have felt like I was facing death, and aren’t we all, but I guess I am choosing some quality of remaining life versus lying in a hospital bed. I know I have been lucky so far rolling the dice with leukemia, but sooner or later the odds bite you.

On a cheery note, I am almost finished restoring the garage to a TV/gaming room, where I will engage in swordplay and bowling with the family. I have nicer furniture in the garage than I had in the first 15 years after college! I still have a little work to do, but closer and closer each day.

Huh?

2010-05-11T10:08:00.000-07:00

Saturday
Have you ever set the DVR to record an event, and then started watching an hour late so that you could skip the commercials? So I did that with the Celtics Friday, only it didn't record because of operator error, and when I tuned it in live, it was in the second quarter and the game was over, Celtics down by 25 and playing like they were beat. That is nothing like my life.

Well, and home at last. I checked out of the hospital yesterday at 10:30, my WBCs rocking the house at 12.7, normal is 4-11, I do love the neupogen shots. So no mask, no neutropenia, walk on out the door. Hallelujah and praise God! It feels like a little miracle, and I hope it keeps feeling this way, dodged not a bullet, but a John-seeking missile!

Tuesday
Don’t know what happened, hit a time skid, been too busy to finish the post. I woke this morning and I am losing my voice and have a sore throat, but no fever, maybe just mucositis or Vfend.

Seen that show ‘Hoarders’ that is airing? My garage looks like that, or did. My kind in-laws and friends moved most of my stuff out of my bachelor pad, and into my garage, a few weeks back. For some reason that I don’t remember, I was not very involved, probably strapped to the bed by Dana. So I am trying to reintegrate some things, and having a general reorganization of things.

Things are a pain in the ass. They clutter our lives, and then break. I wrote this a while back, but it needs something, like an edit.

Things

These things we surround ourselves with,
these cars and boats and bikes,
campers and TVs and RVs and
computers and Cuisinarts and dryers,
they are all anchors, they are barriers.
They weigh us down, hold us in place,
our boat cannot sail, our balloon cannot soar,
we can’t lift off to the heavens.
We are anchored, we fear for our stuff,
we put up walls and signs,
‘Stay Away, don’t touch my stuff.’
We hope for adventure and love,
and hide behind walls, anchored in place,
guarding our stuff,
and then we melt into the earth
and are forgotten.
All we leave behind is a toxic smear,
a twisted blob
of metal and plastic.

Today I will finish up moving stuff around in the garage, and go finish up moving out of the serene place I was in. Spackle. Vacuum. I need a buyer for that big kitchen table I love and for the home gym, or my storage nightmare will be escalated.

All in all, I feel OK healthwise, pretty weak and wobbly, and that Vfend is nasty stuff. I reread the side effects this morning, which included agitation, anxiety and confusion, and I am certainly experiencing some of those effects, especially in talking. I am speaking in dyslexic sort of, but only at times. The damage to my tongue isn’t helping. So, less talk, less bark.

Care for a Slice?

2010-05-06T19:51:00.000-07:00

Last night my doc came in about 8:00 pm, and said he had looked at the CT scan from 2 days earlier, and he did not see any masses in my pancreas. !!!!!!! Before we get too jubilant, he wants to put that scan side-by-side with the scan from two weeks ago and really stare it down. Also, the recent scan shows four spots forming on my lungs. Since it is unlikely that new cancer formed while I was getting chemotherapy, it is most likely a fungal infection. Test results have shown Candida albicans in my sputum, but that fungus is also common in the mouth, as ‘thrush,’ so this is not definitive.

This does mean some change in course. The infection in the lungs must be dealt with first, so we are testing and treating with different anti-fungals. We will be serving a nice pizzaioli funghelli this Friday, so sign up quick, especially you Mike F., know how you love the fungi.

The pizza party means that we stall the next chemo treatment until all the pie is gone, which is too bad since we had good results, and which is not bad because I was dreading going through this again. I just don’t want to lose our progress, and at the same time I was thinking if I had to do this again real soon it might kill me.
None of this very definitive as yet, and my doc is working diligently. He came back from Army Reserve in Alaska and jumped right into his patient list and then hospital list. He and his partners are overworked and stressing their family lives, and I am glad they’re on my side.

My blood counts are coming back, WBC at 2.4, RBC at3.36, platelets at 8. I am getting a transfusion of platelets right now. I think the hair will start falling out this weekend, only few hairs on the tug test. I ate pancakes and ham for breakfast, and it was OK, a little dry, so my mouth is recovering. I have been living on yogurt and oatmeal and Ensure, and amazingly have not lost any weight. Maybe it’s the limited pooping.

I am still keeping most visitors out, and Dana and I are enforcing the closed doors policy. The WBCs are getting close to minimal normal, so I hope to go home before I lose my single room.

I had to make this to keep it all straight:

Chronology of events
4/19 check into hosp. for chemo.; methotrexate, 6000mg
4/19 cytarabine, 4000 mg
4/20 cytarabine, 4000 mg
4/20 cytarabine, 4000 mg
4/21 cytarabine, 4000 mg
4/22 check out 8am but by the afternoon 102.8 fever, collapse, back to hosp. ER 8:30 pm, re-admitted 11:00 pm
4/23-4/25 in hosp. battling fevers (from chemo. or infection)
4/25 released from hosp.
4/26 Brother Frankie arrives to help--feeling pretty good mostly
4/29 Starting to head towards nadir, feeling weak and tired, mouth sores
4/30 wake with 101.5 fever, Dana calls doc who says go to ER. Preparing to go I collapse onto floor; thanks to Frank and Dana for catching me.
Ambulance ride to hospital.
5/1-3 Still in the hospital at nadir--this is the worst of it
5/4- present I am still in hospital but getting better. Maybe out Friday.

Steady On

Out of emotion, no exulting,
no tumbling, no yelling,
no passion, stay clinical.
It’s all getting so timeworn,
I should be feeling more feelings.
But I am still stuck in here,
my legs are weak, my back hurts,
and I don’t want to get elated
and then thrashed,
so I will keep it all tamped down for now,
and you should too.

Golden Moments

2010-05-03T20:11:00.000-07:00

A post from John! He was obviously feeling better today. Fingers crossed that we've seen the worst of the first round. Dana...

Here's John:

Life is so full of wonderful moments, and each of them make the path to dying easier.
My son just came by to visit, and we were making idle chatter, and I was trying to offer any support I could give for what we are going through. He pondered our lives together, and he said he had no issues, no regrets, and I started thinking of all the golden moments.

I remember him blessing me with meconium poop when he was hours old, and the blessings just kept coming. I started remembering these special moments aloud, and the tears started flowing out of me, and he came to hug me and join in a cathartic moment. Wow, I think he’ll be okay.

Lots of action today. I had a sharp pain, like a bruised right rib, at 12 last night, so of course I instantly get the EEG. Third time in 2 weeks. No heart problems until I start removing the stickies. Yowza. Today they removed the PICC line just in case it is infected. I got the first shower in a week, fresh clothes and linens. It sounds morbid, but Dana and I worked on the Last Will and Testament, which is more work than I thought. I can’t decide which piece of Jade to give Lia. And who wants my underwear? Johnny?

It was good to see John over the weekend, he seems to be doing well, but he does need new underwear. I have been drifting in and out of fevers. My blood counts are creeping upward, still neutropenic. My mouth is killing me, so don’t call, I ain’t answering. Also, I know that Dana was critical of the local hospital because they don’t do things as they were done at Stanford. Dana is very much the women defending her man, letting every one know that we have power and knowledge, and we’re not afraid to use it.

In defense of this Hospital, it is a small regional hospital that offers a wide range of services to the community. They get a limited number of patients like me every year. It will be ok. The up side of being here is that I get to be near to friends and family.

The way has been swept of thorns and burrs,
and a carpet of goose feathers and talcum
sprinkled where I walk the path.
These physical pains I have along the way
are only reminders, of the golden moments that I shared
with all of you along the way.

Update from Dana

2010-05-03T06:09:00.000-07:00

Just a quick update because I know some of you worry when you don't hear anything.

John remains in the hospital this morning because they haven't been able to get his fever under control. He is on several IV antibiotics and now they have added an antifungal but his fever keeps coming back as his dose of Tylenol wears off. They are afraid he has some kind of infection, but frankly, they seem somewhat stumped. Last night they drew blood from his PICC line and more directly from his other arm to see if the source of infection is the PICC line itself. The PICC site has been red and angry looking for more than a week now.

Not to knock our local hospital, but from my perspective, what a difference from Stanford. John is in an isolation room because he is so at risk for infection. When I got there yesterday, both doors (inner and outer) of his room were propped open with garbage cans and soiled linen bins. Why? It seems that they were not able to make his room comfortably warm when the doors were closed so their solution was to prop the doors to the halls open so that the warm air could rush in from the rest of the (presumably germ laden) hospital. No one was bothering to wear masks or gowns. Maintenance people and housekeepers were in and out of the room, while John was there, without washing hands. His neutropenic diet includes things that were forbidden at Stanford (dairy for example) and showers have to be ordered by the doctor. I miss the team of doctors that came in twice a day at Stanford too. John seems to think that standards have changed for neutropenic patients, and doesn't want to ruffle the feathers of the hands that feed him, so to speak, but I am ready to go in there and kick some a** and take some names. I think I already have a reputation there as the grumpy, demanding wife.

Apart from the fever battle, John is battling boredom and depression. I think he is growing tired of all this and his warrior attitude is fading as he endures day after day of discomfort and isolation. I keep reminding him that this is his nadir week (or ten days) and that he is expected to feel better soon. Wednesday is hump day with any luck. I think they will scan the masses next week at some point too, and hopefully, give us some good news to boost our spirits. Meanwhile, I have been passing on your good wishes, reading him your blog comments and his email daily. Both seem to lift his mood a little so thank you, again, to those of you who are taking the time to let us know that you’re thinking of us. Email is probably the best way to reach him right now. He gets it on his phone. His email is jclfiore@gmail.com

If I sound tired and cranky it’s because I am. It is incredibly difficult to see someone you love go through this, and this is not the first time for me. Cancer has shadowed me much of my life. Some of you know I lost my mom to cancer after a 15 year battle about thirty years ago. I am watching my boys going through some of what I experienced back then and it’s bringing it all back to me. I want to try to take care of them too. All this pulling in many directions, lack of sleep, stress, worry, and anxiety are getting to me. I have arranged to take this week off from work, probably a good thing, but I miss my little kiddos already. They are the bright part of my life right now and when I’m with them I forget my troubles for a while. They are in good hands with the trusted teacher that filled in for me two years ago while we were up at Stanford. Thank you, Teri!

OK, so this update has turned out to be not so quick. Our cancer writing coach, Sharon Bray says writing “helps you to make sense of things and to cope more effectively with the emotional roller coaster” that cancer brings. And she would know. So here it is. I’m sorry I don’t have John’s sense of humor about this. I guess we all deal with it in our own way. Some better than others. Hopefully, John will be back writing here soon.

Long, wide turn

2010-05-01T18:47:00.000-07:00

Dana again here, typing for John this time. His words:

I’m still in the hospital, it’s Saturday morning. I got here yesterday after an exciting morning, especially for the neighborhood kids getting on the bus as the fire truck and ambulance responded to Dana’s 911 call. Slight fever and chills. Nothing new really, just a reaction to the chemo and a little longer nadir than I had hoped for.

Since my WBCs are at .1 we are really holding back on visitors and since I can’t talk without pain, I’m not really answering the phone, so I am isolated. What else is there to say? Thank you for all your support. Today I will leave you with a poem I wish I’d written because it made Dana cry when she read it to me. It’s from the Writer’s Almanac.

Blackbirds
by Julie Cadwallader Staub

I am 52 years old, and have spent
truly the better part
of my life out-of-doors
but yesterday I heard a new sound above my head
a rustling, ruffling quietness in the spring air

and when I turned my face upward
I saw a flock of blackbirds
rounding a curve I didn't know was there
and the sound was simply all those wings
just feathers against air, against gravity
and such a beautiful winning
the whole flock taking a long, wide turn
as if of one body and one mind.

How do they do that?

Oh if we lived only in human society
with its cruelty and fear
its apathy and exhaustion
what a puny existence that would be

but instead we live and move and have our being
here, in this curving and soaring world
so that when, every now and then, mercy and tenderness triumph in our lives
and when, even more rarely, we manage to unite and move together
toward a common good,

and can think to ourselves:

ah yes, this is how it's meant to be.

Update from Dana

2010-04-30T16:06:00.000-07:00

Well, John gave us all a good scare this morning. He woke up with a slight temp. I called the doctor and he told me to bring John in to the ER. His white blood cell count is way down (not unexpected for nadir) and he is just too fragile to risk messing around with any kind of infection.

As we were preparing to leave, John was at the sink about to rinse his mouth and said he suddenly didn't feel well. I shadowed him for a few seconds around the kitchen asking him if he wanted to sit down but he was not responding. Then I noticed that his eyes had rolled back in his head and I told his brother, Frankie, standing behind him, that I thought he was going to collapse and we should try to get him to the couch. At that moment he did collapse but Frankie was able to break his fall. We got him about half way to the couch but decided to just lay him down and get his legs up and then I called 911.

He was coming around when the firefighters got here (just a couple of minutes) and the ambulance arrived shortly after that. He was taken in ambulance to the hospital where he seemed to rally as soon as he got some fluids in him. We think he may have been dehydrated. He hasn't been able to swallow without a lot of pain so he hasn't been able to eat or drink much. He was in the hospital yesterday getting platelets and got IV fluids, but I guess the fever can dehydrate you quickly and this may be what happened. We all had a scary moment though, and I think poor Mikey got a reality check on how serious his dad's condition is. I called young John from the hospital and he and his girlfriend, Laura, left the bay area almost immediately and are here now.

John was admitted back into the hospital after almost six hours in the ER this morning. He is getting IV antibiotics and fluids. He is very at risk for infection, so really shouldn't have visitors, but they said that barring something else developing, he may be able to come home again after 48 hours. He has a private room this time which he is happy about but he is not happy to be back in the hospital.

His brother, Frank, had to leave today. Thank you, Frankie, for all your help this week! I have arranged to take next week off at this point but we are really just taking it an hour at a time. I know he has lots of people pulling for him out there, some not too shy to leave a comment, so thank you all. I will try to keep you updated and I wouldn't be surprised if he is able to pound out an entry for you over the next couple of days. Keep a good thought for us.
Dana

Hah, no pain!

2010-04-28T11:37:00.000-07:00

I love pain, if I wasn't in pain I would think I was dead. If you can think, 'Am I dead?', can you be? Who among us over 50, 45 even, doesn't wake with some pain?

I am at the low point of the chemo, blood counts are in the toilet, I have to wear the mask outside the house so I am not going out until this afternoon's doctor visit. There I will get another shot of neupogen, to promote blood growth, and a blood test. I have been in some state of advancing mucositis since the chemo slam last week, and this morning my tongue has joined my cheek walls in hailing the armies of all wars as they march through my mouth and take up positions on my lips. They never get much chance in war to trim their toenails.

Anemia is also present, and I bet could bleed pretty good if need be. So I am peachy, love waking up every day knowing it should get better, or not. I guess it's just the waking that surprises me. Thanks for all the blog support, and I don't know if there is a limit, Pat. Does each letter on the screen add to the weight of the earth?

I am in a very discombobulated state. My in-laws and neighbor had an opportunity to move my stuff from my bachelor pad this past weekend, so they did, and I really appreciate the time and effort they made. Given my current state I don't know how I would have gotten it done.
Now I am looking at this pile of stuff in my garage that needs a place, and all the places are taken. I get tired just thinking about it. It all used to fit in here, but life hates empty space.

This whole situation is stressful for Dana, working and taking care of me and worrying about me, so my brother Frank drove out from New Mexico to help out, what a guy. He cleaned out the jammed up gutter, and did dishes, and all kinds of other useful chores. He took Woody to the vet today for some work, and is out getting tires on my car right now. Tomorrow we (he) will get Mike's Honda in to check an exhaust system trouble light.

I kind of wish my body would work like all the mechanical systems around me. I complain that I fix one thing and another breaks, but at least I am at just one thing not working. With my body, they just pile on. That's all I have.

Oar What?

2010-04-24T17:40:00.000-07:00

I remember one time I was in the back of the canoe, paddling through the Great Swamp with Sandy, an old girlfriend from college, and I was looking behind us for some reason. Just as I faced forward, a low-hanging branch swept me from the canoe, and I tumbled backwards into the slow-running water. I came up spluttering and Sandy retrieved me, giggling.

I am equally surprised to find myself still in the hospital on Saturday. I got out of the hospital on Thursday morning, and Stacy was kind enough to retrieve me and bring me to Wavertree. I have been very chilled a lot lately, and figure that chill is just from my challenged metabolism. Stacy comes back with these awesome oatmeal/chocolate chip cookies, which are a little too crisp for me to eat robustly – I can nibble them. I head to bed and wrap up in a pile of blankets. When Dana gets home around 4pm, she adds the electric blanket. She heads to the pharmacy to pick up some meds, and I wander downstairs with a blanket wrapped around me.

I trip over the blanket near the bottom of the stairs, and end up in a jumble on the living room floor. It takes me a long time to get up – I am very weak. I stumble into the family room and fall again. Woody, my dog, is no help. I get up and get on the couch, and Dana takes my temp when she returns, and it is 102.8, She calls the doc, who sends me to the ER. Dana gets Craig next door to help me into the car, ER checks me out and checks me in, and here I remain.

I am alone in this room, just as well since my counts are plunging, as expected from the chemo. Yesterday I was in a funk all day, low-grade fever and no energy, oh woe is me. I feel better today, having gotten my peeing routine down as they flush the chemo with non-stop IVs of saline. I pee every forty-five minutes, whether I have to or not. I saw the Doc last night, and he scheduled an ultrasound, wants a peek into my gut. So no liquids after midnight, and I finally get the ultrasound at 9:30, even thought there is nobody ahead of me,

When I finally get breakfast, the Belgian waffles have been tossed. The mucositis is ramping up, and my lips and inside my mouth are pretty busted up, so I get Rice Krispies for breakfast. It was not as bad as it sounds, I just let them soak in the milk for 5 minutes until they were nice and soggy, and let the coffee cool for half an hour And lo and behold, I have an older style TV in the room, with a lengthier boom but no number pad. It’s not in my face, but to get to channel 72 from channel 4, you hit channel up 68 times. That comment about ‘A Clockwork Orange’ is strange as I just watched that 2 weeks ago for the first time in decades. Is that why I am here?

The Celtics managed a win last night in spite of the refs and Kendrick, so all is well. I hope to be out of here tomorrow. They are continuing to dose me with antibiotics in IVs, and my temp is 97.6, normal for me, I am so cool. Dana and her sisters came by this morning, Barry also, and Dana will come by later to trounce me again in Gin. I keep changing the rules as long as she leaves the Hoyle’s Book of Rules behind, but I am zigging when she is zagging, so ……

Here is a poem Sharon Bray of ‘Writing Through Cancer’ emailed me. She has been a great mentor and supporter through this.

How to Read a Poem: Beginner's Manual
by Pamela Spiro Wagner
First, forget everything you have learned,
that poetry is difficult,
that it cannot be appreciated by the likes of you,
with your high school equivalency diploma,
your steel-tipped boots,
or your white-collar misunderstandings.
Do not assume meanings hidden from you:
the best poems mean what they say and say it.
To read poetry requires only courage
enough to leap from the edge
and trust.
Treat a poem like dirt,
humus rich and heavy from the garden.
Later it will become the fat tomatoes
and golden squash piled high upon your kitchen table.
Poetry demands surrender,
language saying what is true,
doing holy things to the ordinary.
Read just one poem a day.
Someday a book of poems may open in your hands
like a daffodil offering its cup
to the sun.
When you can name five poets
without including Bob Dylan,
when you exceed your quota
and don't even notice,
close this manual.

Life on Earth

2010-04-22T09:52:00.000-07:00

I have a new cellie, and he is a fellow BMTer from Stanford. Our blogs were passing in the night at Stanford, and now I’ve finally met Curt in the worst of circumstances. Life is so strange!

I had a pretty good night’s sleep, after taking 10mg of Ambien at 9pm. Was awakened a few times, for a writing sample and dose of cytarabine at 2am, and vitals at least once. Ambien helps make it unclear. When I woke up at 7 am I felt like I’d been on a bender, big headache, and the inside of my mouth announced that I’d had cytarabine and methotrexate. The raging mucositis is back. I ate my egg and cheese biscuit very gingerly, and left everything else but the juice. Doc came to see me and ordered up some steroid wash for my mouth, and another wash, and my mouth was back to normal in no time.

It’s 2:30pm right now, and I just started the third of the four cytarabine doses, with the last coming tomorrow at 2 am. That will finish at 4 am, then a dose of neupogen to bolster my blood, then I go home. I can expect to hit nadir, the low point, the pits, on Tuesday. My blood counts will drop to the floor, and I will be anemic and neutropenic, back on the mask outside the house. I can expect to slowly recover, and then come right back to this spot for the same treatment in 2-3 weeks.

Somehow in my enfeebled mind I had this idea that I would come in here, get the slam, and then either be miraculously cured or dead. But, we must play out every little battle, all the soldiers get a chance to fire off their guns, circle the wagons, batten down the hatches, fix bayonets, right wheel and charge! Nothing is simple. So fine, I am adjusting my thinking to the longer term.

Watching my old cellie and watching his rookie moves, I realize how prepared I really am for this bizarre environment, even though I made a few mistakes. I am prepared with my bag of stuff, things like an extension cord. The one thing I am trying to get used to is sharing a room, trying to tune out what is going on next door, focusing on my own stuff.

They have these nice TVs for each room that swing out on a boom, individual for each bed, and you plug your headphones in and enter your own world. However, the engineers that designed the system made the boom so short that if you sit up in bed and swing the TV in front of you, it is 6” from your face. You end up swinging it to the side, and turning your neck to watch TV. I had a stiff neck after the Celtics game last night. Why don’t they consult me before they do this stuff?

Hey Manitouboo, I think the drug that caused the nerve damage is vincristine, and I have very minor neuropathy from that, just enough that I am a klutz and blame the dropping of things on the vincristine. It may be that cytarabine does this also, but I don’t recall that. The writing samples are because the cytarabine can effect fine motor control by impacting the brain. And here are the pants; I wore superheroes yesterday.

Thankfully I do not see a white hat, or any other stool collector, unless Dana is here. She has been trying to find the right stools for the kitchen for years, so there are a few in the garage. And on a really positive note regarding stools, I was finally able to find a quiet moment here in the Valentine suite this morning and came out with a nice melodic Nat Adderley tune.

Roger R. came by to visit yesterday, man he looks good, doing triathlons and working out and staying in great shape. It was great to see him, and then my brother from another mother Barry came by, and today Drew W. visited, and then sister from another mother Stacy, and Dana came by for lunch, so lots of action.

Thanks for those strong sentiments, Anonymous, I just read them as I was finishing this up. I know there are silent supporters out there, members of my karass like Bill and you, and I feel all your hands lifting me up. Sometimes I see my spirit as the beautiful wooden canoe in ‘Deliverance,’ watching that canoe going down the river and knowing that it cannot make it through the rapids, that it will snap in half when it goes over the falls. Other times I am the uglier but more hardy aluminum canoe, dinged to hell, heavy, clumsier, but able to last. I have the 16’ version of that canoe, the OTCA. I think it was an OTCA 18 in the movie. The OTCA now sells for $7,800 from Old Town.

I chose for the sentence I had to write before cytarabine –
‘Hope is the thing with feathers,
that perches in the soul,
and knows the tune without the words,’
which is a misquote by me of Emily Dickinson’s poem ‘Hope.’ It should be ‘sings’ not ‘knows.’ I just hope it is not an omen that I screwed up ‘Hope.’ Yikes.

I will go back to Wavertree tomorrow, needing the loving and tender care of Dana as I sink into darkness. Since I slept well, I do not have a good bleak poem or thought to share with you. Life goes on, oh-bla-di.

Hey, update, I am back at Wavertree, just got here, good to be here. I am going to head for the couch and watch season 2 of 'Breaking Bad.' Guess what I am pondering?

Sleepless Valentines

2010-04-20T18:58:00.000-07:00

It’s 8:45 am, and I am hanging in my cell at French Hospital with my cellie Tom. I am by the window, he is by the door, and we have had our breakfast, French toast and sausage, pretty good but a little spicy if you have mucositis. Also, apple juice and coffee. We both slept badly, interrupted every twenty minutes or so for one reason or another, just often enough that we (at least I) couldn’t get past the whirring and clicking of the IV pumps (very timely comment by Manitoubou on the last post.) Tom had a knee replaced yesterday morning and has some pain, and I am peeing a lot from all this hydration. I asked for an Ambien, but my Doc hadn’t ordered it, so they gave me a Benadryl. I was not kept awake by sneezing. We have formed a yard gang, the Valentine Dudes, since we are in room 214. The tattooist is coming by later to get our colors inked on.

It’s raining pretty good on and off, and my windows seat is a little cool, both in view and in venting. As soon as cellie Tom leaves for physical therapy, in a minute or two, I will try for my daily constitutional. Every time I share a room in a hospital, the bathroom is right by the other guy’s bed, and his guests will be sitting in chairs just outside the bathroom door. Yesterday I just drove them all out with some ‘Reveille’ on my bugle, followed up with ‘Charge!’ They did not return until ‘Taps.’

Dang, they all just left for Tom’s PT, and now the nurses have moved in to change his bed. I am left here wishing for 5 minutes of privacy. Why do I always end up blogging about the hospital bathroom experience? Dang, they all returned from PT just as the nurses finished the bed, so I am breaking out the bugle. I am considering doing a Miles Davis jazz riff.

I came in yesterday morning and was getting a PICC line put in by 8:30am. I blew it and let them go with the right arm, without considering which side the IV pole would be at. Of course, I hadn’t seen the room yet, but still, an old pro like me should’ve known which questions to ask. Doh! Now I have IV lines across my body, and have to be a little more careful when I move.

Anyway, I have been sucking down 2000 mg of methotrexate since yesterday about 1pm, and I will finish around 11am. Just like old times, except 50 times more in one dose. No nausea, no side effects, but the best is yet to come. After the methotrexate they will hit me with the cytarabine, in pulsed doses over the next 2 days. I have to give them a handwriting sample before the first pulse of cytarabine, as a baseline sample. After each pulse they will get another sample, and if I start writing like a doctor, that’s bad. If I start writing like Hemingway, that’s worse, and if I start writing like Nietzsche, I turned German.

It’s funny but once I get in the hospital my whole mood elevates a little. Maybe it’s because I feel like I am doing something to battle this disease, maybe it’s just that I get in this scrappy mode, still wanting to live and to prove I am a tough guy. I still don’t like the crazy idea that people are best served when in their lowest of times by sharing their living space with total strangers, but I’ve harped on that before, so I let it go now.

Unfortunately, when you lie sleepless in the night in the hospital, that is when it all seems the most hopeless. I actually had to add planning my funeral to my to-do list in my brain! I remember having to go do this planning with my brother when my father died, or maybe we were just finalizing it, I don’t clearly remember because I wasn’t all there when it happened. I don’t want Dana to have to do this when the time comes.

To Do List

It’s a lot of work,
getting ready to die.
I don’t want to leave a big mess
for my loved ones to clean up.
Sorry enough the troubles I left
in their minds, all those bad memories,
like stacks of 33s and videotapes that
got wet in the flood, warped and
smelling of rot and earwigs.
They have digital copies but can’t shed the
old records, just in case.
I go through my things and fill the boxes-
Goodwill, Give Away, Garbage.
My buddy gets this pile,
sell the gym, who wants this desk,
get tires on the car,
write a maintenance schedule,
fix the refrigerator,
where is the living will,
where is the last will and testament,
are the bank records straight,
is the bill-paying routine clear?
And then I think, ‘What about
my remains, my funeral, I don’t want
to add a gritty pile of ash and bone
to the soggy messes
in the basements of those I love,
to the warped vinyl and the moldy papers.
Will I need special handling
because of all the chemo?
What can I do to save my love
from all the damage I’ve wrought?
I don’t have time,
I need more time,
please let me pile up
a little more time.

Of Mice and Men

2010-04-16T16:20:00.000-07:00

Friends and family, we are moving right along here, so just to let this accursed leukemia know that we have taken notice of its presence, we are firing a big dose of chemo right into its gut (actually my gut). On Monday, bright and early, I will check into French Hospital right here in SLO, get a PICC line inserted, and then take in a big dose of methotrexate for two days. Starting Tuesday, I will take in a dose of cytarabine for two days. I will leave the hospital on Thursday, whistling some Satchmo song and walking crookedly, F*&)&%#ing hip.

I was on methotrexate for 2 years from ’05-‘07, daily, but only 40mg/day in a pill. This will be something like 2000mg injected. They also injected methotrexate into my spine with those lumbar punctures many times. Hmmm, is that coming? I also had both methotrexate and cytarabine during the induction phase, in February ’05 and in July ’08. The big difference this time is the dosages are huge.

And who can forget the PICC (peripherally inserted cardiac catheter) line, put in there so that my veins don’t get dissolved by the chemo. Instead, the chemo blasts right into the heart and is diluted enough to not burn through my tissue. Who thinks up this stuff? There is pic of a PICC back in '05, at http://johnsleukemia.blogspot.com/2005/02/guided-imagery-i-am-board.html.

I am feeling all sorts of pains in my gut and back, and some good headaches, which makes me nervous. Leukemia likes to hide in the brain, which is why they do those lumbar punctures with methotrexate. I have been doing a bunch of PC work, so is that why I have headaches? Has psychosomosis snuck in through osmosis? Is all this pain just a function of my brain? Can I restrain from another refrain, or should I maintain with this quatrain? I sense a bad poem coming, or was that it?

So, I am very cheered by the news that we have some heavy artillery to bring to the field. Unfortunately, there are no clinical trials involving chocolate and Italian food, nor any other stuff for that matter. Since most people don’t get a third shot at ALL, after living through a bone marrow transplant, there probably isn’t much call for killing mice with new drugs.

Speaking of mice, I was having a time with the mice here, scratching around at night, adding to my sleepless moments. I thought they were trying to get in, and sealed the only point of entry I could find, and then I would find wallboard dust on the floor where the sealed hole was. They were already in, and trying to get out! I made the mistake of leaving a few Cheese Nips in a bowl on the counter, and in the morning they were gone, with some crumby evidence on the counter. I found mouse turds on the counter and the floor.

The next night I heard noises in my oven. I leapt out of bed, but couldn’t find any mice. In the morning I tipped up the stovetop, and found party central, Cheese Nip crumbs, turds, pee. Great, in the stove. I cleaned the whole mess, and disinfected everything. Later I moved the recycling bins, and found more mouse evidence. I moved the refrigerator out, and found the mouse version of Studio 54. More major cleaning, but still the question remained – how were they getting in?

I did not want to damage my karma any further, so I got a couple of live traps and baited them with peanut butter. The mice went in, ate the peanut butter, left a thank you note, and left (me wondering how they did it.) So, karma be damned, I set the snap trap and SNAP! Now there are three dead mice, my house is super-clean, and I have a hole in my karma. I felt bad, they were just being mice, and so I had to find the point of ingress.

Then I looked under the bathroom sink, and discovered the mice loved my vanity drawers. What a pain cleaning that whole mess. But this showed me their way, the tiny gap where the pipes came in under the sink. I got a can of expanding insulating foam and squirted some into the gap, and the mouse problem is solved. I tried some of that foam on the hole in karma, but no luck. I will take some down and outer out for a sandwich, maybe that will do it.

I told my landlord today that I had to leave in thirty days, and he was very understanding. I will begin the process of emptying this place today, reclaiming space in the garage at Wavertree, selling off the furniture I bought, slowly moving a carload at a time and culminating in a Uhaul and a little help from my friends.

Thank you everyone for your comments. When I started editing the blog into a book, it was over 1000 pages with pics and comments. If you ever read “Moby Dick” or “Look Homeward Angel” you can appreciate that I want to boil this down to the thick sauce. Maybe if I just drop all the vowels I cld gt t dwn t 250 pgs. Myb nt.

I love the idea of getting the Jade fountain done, it’s been in my head for years, and it might last long enough for my grandkids to break. My bucket list is a mess, because there is all this stuff I have to get done to ease the burden for those still toiling in the mortal portal, huh? Anyway, the other problem is that I am a physical mess, so I can’t get tubed, let alone go surfing, so that’s out.

I love the Writer’s Almanac, and have it delivered by email everyday. I can’t believe you did that, Pat K., but what the heck! Poor Garrison must be swarmed with poems. Janice and Craig, thanks for the offer, I may need some help in the end, not sure yet. And Cindy, I wish could come to Jamaica, but I think the travel ban is going to limit my bucket list. I have that same weird thing where I remember some plants in the latin. Insects too. And then I blurt them out like I know something, and get this look from Dana that says ‘Shhh, don’t be an ass.’ Leptinotarsa undecimpunctata, Liriodendron tulipifera, Cedrus atlantica ‘Glauca’. Shhh.

And thanks for all the positive juju flowing my way, send white blood cells too!

Today's Writer's Almanac Poem:

Vigil
by Dennis O'Driscoll

Life is too short to sleep through.
Stay up late, wait until the sea of traffic ebbs,
until noise has drained from the world
like blood from the cheeks of the full moon.
Everyone else around you has succumbed:
they lie like tranquillised pets on a vet's table;
they languish on hospital trolleys and friends' couches,
on iron beds in hostels for the homeless,
under feather duvets at tourist B&Bs.
The radio, devoid of listeners to confide in,
turns repetitious. You are your own voice-over.
You are alone in the bone-weary tower
of your bleary-eyed, blinking lighthouse,
watching the spillage of tide on the shingle inlet.
You are the single-minded one who hears
time shaking from the clock's fingertips
like drops, who watches its hands
chop years into diced seconds,
who knows that when the church bell
tolls at 2 or 3 it tolls unmistakably for you.
You are the sole hand on deck when
temperatures plummet and the hull
of an iceberg is jostling for prominence.
Your confidential number is the life-line
where the sedated long-distance voices
of despair hold out muzzily for an answer.
You are the emergency services' driver
ready to dive into action at the first
warning signs of birth or death.
You spot the crack in night's façade
even before the red-eyed businessman
on look-out from his transatlantic seat.
You are the only reliable witness to when
the light is separated from the darkness,
who has learned to see the dark in its true
colours, who has not squandered your life.

Field dependent

2010-04-14T17:16:00.000-07:00

We just came from the doctor’s office, so I want to relate the latest info. The CT scan I had last week shows no change. The masses are the same size. This means the doctor will come up with a chemotherapy plan by the end of the week. We probably need some new chemos, so he will work with Stanford to see what is available, including clinical trials. I may have to go back to Stanford, either in hospital or outpatient.

We will not pursue donor leukocyte infusion until those masses in my pancreas are very reduced. My best hope right now is for a clinical trial that involves chocolate and italian food, with a side of mahi mahi, not necessarily all at once. If nothing at all happens, or chemo cannot arrest the progress of this disease, the Irish wake is planned for some time in October or so. I would like to be there, listening to you all say what a great guy I was, but every one I have suggested this to (having a wake before I die) said it would be quite weird and uncomfortable. Cowards.

All this leaves me with a lot of work to get done. Do I finish turning the blog into a book? Keep going on the genealogy project? Make the jade fountain I always said I would make? I know I have to make all the finances very straightforward, and finish my appeal with Social Security.

I will most likely move back in with my family. Dana and I have been working things out, and I love her, and she loves me, and she is very supportive and knows that I will need her support. Moving back in will be a big job, but I will just take my time. Time to shed some things, too.

It occurs to me that it would be so much easier if I knew we had no hope and how much time exactly I had, but of course there is a glimmer of hope and I am prepared to dash through the eye of the needle, again. None of us knows how much time we have, and it highlights to me just how important every day is, how important it is to tell my family that I love them, to pet my dog and throw the ball with him, and to appreciate the beauty all around me.

Dana and I went out to the east of Santa Margarita last Thursday, to Shell Creek Road, where the wildflowers were having their annual show, spectacular this year after the rains. We had a little picnic and basked in the glory of living.

I wrote this a few weeks ago, in a bleak mood, based on the weekly prompt (stranded) from Writing Through Cancer:

Empty

Vision’s getting blurry,
skin like dry cracked paper,
random pains are flaring up
in my abdomen and joints as my body
consumes itself in a fight for life.
Stranded in nowhere, rocks and sky and
scrub, rapidly fading now,
only fumes in my tank,
nothing in the bank, raided and
traded for this long shot at life and love,
for hands to ease me down,
a rock for a pillow and sand
for a blanket,
and the vultures overhead like a ceiling fan,
shade, blaze, blaze,
shade, blaze, blaze.
Relentless, relentless,
comforted that we all die,
it had to happen,
this too shall pass.
Why be thankful for the pain,
just to know there is life yet?
The accounts are drained,
the tank is empty,
and I’m stranded between
living and dying.

Cha-Ching

2010-04-06T15:02:00.001-07:00

What a golden time we had in Las Vegas! We had a great room in Paris Hotel, beautiful views, and our package included continental breakfasts from 7-11 and drinks and appetizers from 5-8. The breakfast was bagels, lox, cream cheese, onions and capers, watermelon, cantaloupe and honeydew, croissants and pastries, yogurt and granola, teas, coffees and juices, just about everything except bacon and eggs. The appetizers at night included mini-sandwiches, pastas, empanadas, and everyone was pouring themselves big stiff drinks to start their night.

We checked out the new City Center on Thursday, which MGM bought after Dubai decided they'd had enough. Pretty nice hotels and casinos, high end, and architecture reminiscent of Gehry in Bilbao.

Here I am getting rubbed out.

Thursday night we went to Palazzo to see ‘The Jersey Boys,’ but BestofVegas.com muffed our order. After an hour on the phone, I got it straightened out, and we had two premium tickets waiting for us at will call. We spent the night frittering away dollars at the slots. We never did win, but we didn’t lose much, less than planned, and we had a good time.

We rented a Mustang convertible for the last two days, so Friday we drove out to Red Rock Canyon and had a picnic.

At one of the overlooks we were by ourselves, and 'Kiss' by Prince came on, and next thing you know we are boogeying down, radio blaring, golden!

Friday night we saw a comedy act that was pretty funny. The venue was shoddy, and we had front row seats in the VIP section (Very Insultable People), but luckily there was a big baby-faced guy sitting next to me, and he was the chosen foil. Front-row seats are not what they’re cracked up to be, because you are straining your neck to see.

Saturday we drove out to the Pinball Hall of Fame, a big hall filled with machines from all the eras of arcades. We played a few of the old classics, and some of the newer styles, Dana held her own while exclaiming ‘Ohh!’ repeatedly, and all at a cost of $10. We probably saved $100 by not gambling. We then drove downtown and gambled a bit at some of the older casinos, the ones with lower limits and better odds. No comment.

Back to the Palazzo for ‘The Jersey Boys,’ and we had tenth row center seats, perfect. The show was fabulous. It is the story of Frankie Valli and the Four Seasons, music slightly before my time, but most of the songs were very familiar. The show was great, the guy playing Frankie Valli was voted best singer in Vegas, a very crisp production. We had some drinks in the nightclub, and then drove off-strip to dinner at Envy, a noted steakhouse. Dinner was excellent, and after dinner we cruised up and down the Strip with the top down and rock and roll blaring from our radio. We were voted the ‘Coolest Cruisers’ by Las Vegas Review, capping off a great last evening in Vegas.

The most important thing for me on this trip was that Dana and I reconnected in some ways, and I feel hopeful that the future includes our relationship. It was also important for me to have a good time without the travel angst I often carried around, and I succeeded to some extent.

When we got back, lovely Lia had an Easter dinner of roast lamb ewe could die for, scalloped potatoes from Eden, and asparagus spears on a bed of angels and baby hair. Mmmm, delicious, and so beautiful it was difficult to eat.

I will get a CT scan on Thursday to see if the reduction in immunosuppression is having any effect, reducing the leukemic masses in my pancreas. I do feel slightly more anemic, sleeping a little more, not much energy. Press on.

Poem I wrote called

Flea Market in My Head

The full moon charges up the sky,
lands right in my eye,
and I think, ‘Where am I?’
Then I sense my being,
my pains, my scraping hip sending
groans out of me,
my swollen gut, cramped and gassy,
the aches in my back from my misfiring pancreas,
and I realize I am still alive.
In full moonlight, I give thanks
for another day, for family
and love and friends and doctors.
I try not to count the days remaining,
who knows anyway, miracles happen,
and once that starts my mind is
a flea market, and once inside I am
jumping from booth to booth.
I am at Rocky Hill flea market, and the flea market in Monastiraki in Athens,
and the Rastro in Madrid,
and the big one outside Valencia,
and the one in Malaga with all the African stuff,
and I am searching all the booths
for that special something,
cheap tools, organic vegetables, drums that smell bad,
antiques, the love of a woman,
local jewelry, counterfeit brand name clothing,
around I go, did I pay Mastercard,
how should I have played those pocket Jacks,
can the Celtics still win?
The moon stares me down and charges me up,
around the market I go,
doughboys covered in confectionary sugar like
Jonathan Winter’s hair, caramel apples that can
take out your fillings and remove crowns,
is my Mom alright,
fried snickers, kettle corn, bad bad things,
what does it matter, they can’t kill me.
Booths filled with cheap CDs, old vinyls,
racks of mystery novels, Harlot’s Kin romances,
what is that thing on the dog,
titillation, porn mags if you’re bold enough to ask.
Inside my head it all swirls around,
can’t be stopped, the earth is a big spinning flea market,
and I am drawn into booths that have what I need,
what I love, old broken-down things,
who knows what they were used for when complete,
but they could not be discarded,
someone might want them, they are here to
swirl around my brain,
to glisten in the moonglow, to ride a beam
into my eye, into my head.
In my brain I am hoarding things,
I am moon-addled, making piles in the
corridors of my mind, stacks of National Geographics and
New Yorkers, I love the cartoons,
did I lock the car, what is that scraping noise,
is that a mouse, I am
making piles of memories
and images and moments and faces and voices,
and I worry that if there was a fire in my brain,
could I get out, or would I
trip on a ferry ride to Greece, or over that dog Chip
we had for a few weeks,
would I burn up in the fire of my swirling mind,
and the moon won’t let go, so I
get up and make some tea and browse
the flea market in my head
until the sun finally comes up and
I start another day.

Dang it, I'm back

2010-03-31T12:22:00.000-07:00

Dear blog readers, I am sorry to say that I have to now reopen the blog, and rename it again. This is like an episode from the Twilight Zone - twice I have entered the ‘final’ blog post, and each time I have relapsed within a few months. In other words, I have relapsed again! Three strikes and you’re out! Third time is a charm! Third on a match gets pregnant! Three’s a crowd!

I was supposed to be getting my hip replaced around March 22, and in preparation we did a bone density scan. My bone density is fine, but some gray areas were seen in and around my pancreas. Ultrasound showed these to be 2 masses in my pancreas and a third in my kidney. The largest, in my pancreas, is the size of a small potato, about 3”x2.5”x1.5”, and not as tasty. CT scan showed it even better, and a taste test proved that a potato is a better baker.

A biopsy of the mass in the pancreas showed this to be made of leukemic cells, and the assumption is the other 2 masses are also leukemic cells. We followed up with a bone marrow biopsy last Wednesday, and I received the news Monday that there are leukemic cells in my bone marrow, but in very small quantities. My blood tests have not changed, with slight anemia and no other abnormalities.

So, the leukemia is back in spite of a successful BMT. It is back in an abnormal way, but it is back. Grrrrrrr, give me a break, this isn’t fair, where is God?, etc. etc. As much as I tried, all the ranting and raving and tears and wailing and gnashing of teeth won’t change anything.

The action plan is as follows: Stop the prednisone immediately, and cut the prograf to 1mg every other day. This should allow the immune system to fight harder and hopefully kill this cancer attack. The minor graft v. host I have had for over a year was not a good thing, after all, so we need to stir up this immune system into attack mode. Chances of this succeeding are not that good, but it could happen.

In ten days we do another CT scan to see if the masses are shrinking. If so, great. If not, we move on to chemotherapy. You know me, I love some red death and numb me up. Actually, I may get new stuff, as I may have reached my lifetime amounts of the old chemos. Seems odd that they'd worry about that, just give me what works best. Additionally we may want to harvest leukocytes (WBCs) from Lisa and transfuse them into me, for an extra boost of cancer fighters, henceforth called DLI (donor leukocyte infusion). The docs are also looking into clinical trials.

My body is responding either psychosomatically or for real, with backaches, joint pain, stomachaches and lightheadedness. I am chilled a lot, and my #$%@^ing hip is killing me, but that is not getting replaced any time soon, and I limp on. I walk around like I am drunk, careening into things.

So fellow wanderers, here we go again. Needless to say, I am shattered by this news, and worrying how much is left in my tank of will and positivity. I am trying not to dwell on this, and mostly succeeding. In the back of my mind I am developing a bucket list, but you didn’t hear that and I didn’t say it, that is too gloomy a thought. We all will die, I am ok with that, but I thought I went through some agony to gain ten more years, won that bet, and now feel shorted.

To add to this, the Social Security people sent me a notice that they had overpaid me, and to please send them a check for $85,000 in 30 days. I filed my appeal Monday morning. Since I am feeling so lucky these days, Dana and I are going to Las Vegas for the anniversary trip we didn’t take last November. We’re leaving today and coming back Sunday. I have a plan to drop $85K on black at the roulette wheel, and see what happens. Wish me luck!

Peace Out

2010-01-29T12:01:00.000-08:00

It’s been a long time since I posted, and this will be the last post of Holy Cow. There may be some new blog coming, I don’t know. So much has happened since the last post. I will try to be brief and kind.

First, my health is OK, I went to Stanford yesterday to see my BMT doctor, specifically to see how he felt about me getting a hip replacement. He told me about 50% of long-term steroid users suffer bone loss and need joints replaced, and he encouraged me to get a MRI and see if the hip is fractured; he thought it probably was. He also recommended the bone loss medications – Fossamax, Citrical, and vitamin D. I am an old lady. My blood pressure continues to run high, and he wants me to go on medications to lower that. I probably should cut back on the 5 cups of coffee I am drinking first, and see what that does. It is the only drug addiction I have left, so I am scared.

Right around our 24th anniversary, November 23, Dana and I decided we needed a separation for a time, a ‘trial’ separation, so I no longer live at Wavertree, I now live in a very serene place on the outskirts of SLO, with a 5-acre field out my front (only) door, nice views in every direction from every room, a nice garden, 3 quiet and studious students as neighbors, lots of critters, and beautiful sunrises and sunsets. Great place to think and ponder and write, and that’s what I am doing.

My front yard

Typical sunrise

I am working on my serenity, my quietness, muting my trumpet, and I am delving into my Tao. I am taking Tai Chi, and Pilates, and volunteering in a few places. I have gone to some poetry readings and shared some of the stuff I have written lately. I spend an hour each morning writing, whatever pops out, and I have a number of projects I need to get going on once I finish the office this weekend. I have internet only through a Droid phone, and that is a pain at times, and I am struggling to put together a decent PC.

Settling into another house took a lot of work, been at it since Dec. 20 and it’s just about done. I was a vagabond for a few weeks in early Dec. - thank you Lia for the use of your house. Life is serene.

Gutted

When they tore me apart,
look what fell out,
green fields and hills,
pink skies, dog fur and
womens’ rounded butts,
hair and teeth and old sutures,
benign cysts, red death,
an Ipod and old hiking shoes,
bad poems and cowboy music,
stale and moldy love,
misplaced blame, lost trust.

All of Us

Been through it all now,
been through some anyhow.
Compressed, indented, insulted,
infuriated, enraged, encaged.
Poked, prodded, tested,
abused, teased, squeezed, diseased.
Ejected, rejected, selected, disinfected.
Gloved and loved, hugged and bugged
Body burned and broken, drowned, irradiated,
parts falling out, poisons pouring in,
my own Three Mile Island,
Chernobyl, Bhopal,
Think global act local.
I tamped down the fear, the pain, the anger, the memory,
to cope, to hope?
To feed my ego, my addiction, my inferno.

Been through it all now that
you cracked the egg
of my comfort,
spilled the stuffing of love
from my pillow, tossed
me out of bed.
I flailed in the yolk of my sins,
bits of feather and shell stuck
to my knees and elbows as I crawl
from the wreckage and the fire, back from Hell.
Am I Lazarus, or the Phoenix, or Sisyphus?
Or just not here, not now?

Dispose-All Pain

The dispose-all is broken,
so the dregs and sins of my cooking,
egg shells, celery ends, burnt toast,
apple cores and carrot tops,
are piling up in a bowl on the countertop.
The ill-fitting lid doesn’t hold back the decay
while they wait to be buried.
The fruit flies have found it,
and fly in my face to thank me.

It’s like Haiti in this bowl.
I don’t have a lid that fits,
and the dispose-all is broken.
I have to see the refuse,
can’t just flush it away,
get it out of sight.
They are cutting off
limbs like carrot tops
and celery ends, no anesthesia.
Do the carrots cry out in pain
in a language I don’t understand,
or I just can’t hear them?
I empty the bowl into a hole
I dig in the yard,
and go to the store
for a new dispose-all.

Burrito of Love

All those tragic love songs,
poems about broken hearts,
true loves torn asunder –
their tears cover the earth.
I fold them all into a
giant burrito of love for you,
rice and beans to show how
I’m stuck on you,
cheeses and sour cream to show how
our love has aged but must stay fresh.
I add some chicken to give
my love burrito some more protein,
so you’ll have the power
to love me back.
Tomatoes, avocados, lettuce and onion,
plus a little cilantro and salsa,
all of the earth as is our love, organic and
eternal, all-powerful,
filled with god,
all wrapped in an
extra-large tortilla,
zero grams trans-fats.
I fold the ends,
trying to contain all the
love and emotion of
all those love songs,
all those poems,
‘Somewhere I Have Never Travelled Gladly Beyond,’
and ‘Love, Love Me Do,’
without spilling any rice
or leaking any salsa passion.
I give you this burrito,
but then you say,
‘No thanks, I already ate.’

I love my dryer

My major appliance just can’t get hot.
It could be her igniter is shot.
If that isn’t it, it might be the fuse,
or the optical sensor’s seen too much abuse.
Is she set up for propane
and I’m giving her gas?
I’ll have to convert her,
what a pain in the ass.
Could be she’s electric
and just not plugged in,
or she tripped the breaker –
I’ll flip it and try agin’.
If she’d just get hot
I’d live a clean life,
My major appliance
Would become my wife.
Whirlpool, Amana, Maytag, GE,
Spinning and heating and tumbling me.

Waffle Break is Over

The finches are telling me
what to do,
prune the tree, move the feeder,
add some seed,
hurtle headlong through space,
find a friend, call your mom.
What happened to that
finch I loved,
golden feathers, smelled like flowers,
sang so sweet?
Oh, here is another,
golden feathers, smells like flowers,
sings so sweet.

Thank you all for your support through the leukemia ordeal. Life goes on, and then it ends. Be at peace.

TNT speech and race pics

2009-11-10T09:25:00.000-08:00

I promised to post the speech I gave Friday night, so here it is.

Hello, my name is John Fiore from the SLOHS team. I am living proof that your efforts save lives. I am very glad to be here among so many of my heroes, and I am so happy to be able to thank you all for your outstanding effort. You helped to save my life, and the lives of many others. You have raised money to help the Leukemia and Lymphoma Society, and it is your effort that compels me to be here today, saying thank you.

Here in this room we see one response that people have when friends or family are stricken. They bond together to find solutions, to do what they can. They undertake great efforts and withstand great pains so that others can have a better chance at life. We have gone through the massive effort of raising donations in a tough economy, asking everyone we know, and some we do not, to donate to the LLS. Tomorrow, while you are walking or running the race, and you start hurting, think of the people that you have already helped with the monies you have raised, go to a peaceful place in your mind, and take another step.

When they told me in Feb.’05 that I had acute lymphocytic leukemia, I was stunned. The next day my wife and I were on our way to Stanford Medical Center, where I was treated with a cocktail of drugs called CALGB8811. That stands for Cancer and Leukemia Group B trial number 8811. Research by CALGB is sponsored by the National Cancer Institute and in part funded by the LLS, by monies raised by people like you.

F Ground is the ward at Stanford for cancer patients with compromised immune systems, and this would be home for 4 weeks or so, while they slammed me with the chemotherapies that would shock my bone marrow back into line. This was the room they first gave me;

Just kidding, this was the actual room, all to myself because of my low immunity, with a nice garden just outside.

Every six months or so a patient comes into F Ground, takes all the chemo, and for some reason, does not get very sick – little nausea, minor illnesses, generally healthy. I was that patient.

I roamed the halls of Stanford Medical with my IV pole, imagining I was in a big art gallery, looking at the artwork that lined the halls.

When family came to visit, we meditated in the meditation room.

When your life is threatened by cancer, you have time to ponder your existence and your mortality. At sleepless moments, you ask ‘Why me?’ The answer is of course, ‘Why not you?’ You ask yourself, ‘Why go through this?’ The answer is that while I don’t mind the fact that I will die, I am not done living yet.

I want to see my sons pursue their dreams, and I want to travel the world with my wife, so I needed more time. I thought if I had a few more years, ongoing research could help me keep going. Thanks to all of you and those like you, that research has given me that gift of more time.

You can walk around for hours in the hospital halls, and that is what I did, pushing my IV pole and wearing my HEPA mask

(show the mask). Since I was in an isolation room and effectively isolated when outside the room by the HEPA mask, I resolved to be this lone warrior, this monk trekking to health.

I settled into my isolation room with a laptop, and quickly tired of sending multiple emails to people saying the same things over and over. When someone suggested I write a blog I jumped on it.

“Holy Cow I Have Leukemia” was born, and there I documented what it was like to be in the hospital with leukemia.

The blog would be my job, and I took my job seriously. For my blog profile, I used the poop catcher as a hat;

it reminded me of the hat worn by The Flying Nun on TV when I was a kid, and later it figured prominently in my stay.

The way it is supposed to be used:

(quickly to next slide)

Of the 22 people on F Ground, I saw one other actually walking around; the rest were too sick. I walked all around that hospital, day and night. During all my walks, I saw lots of things in the hospital, and I wrote about them in my blog.

I wrote about the gardens, especially the rooftop garden of the Children’s Hospital, and all the sick and frail kids in the Childrens Hospital.

I wrote about some of the experiments I performed while in the hospital. The best experiment was double Menu Day, when I tested the limits of the kitchen. Here is the menu,

here is the lunch

As I reread the blog looking for pictures and funny stories to bring to this podium, I realized how crowded it was in that isolation room. All sorts of friends were reaching out to me through the blog, the phone and email, writing comments, offering support and inspirational quotes, and writing crazy stories and cool poems in the comments. The lonely trekking monk, me, was actually part of a large group making a push up Everest. If I wobbled toward a crevasse, many hands held me up, and with this great support, I kept trekking to this point. Here we all are again, a large group that has come together to conquer a mountain, to hold up those that need our support.

With the support of my friends and family, I did go home after three weeks, a little ahead of schedule, and then went through two more years of chemo and radiation.

Since leukemia tends to hide in the skull, around month 4, mid-May ‘05 , I wore this great-looking mask [show mask]

and was strapped to the table for cranial irradiation. I like to wear the mask every now and then, it makes me look like I am going fast, but kind of freaks out the neighborhood. [put on mask]

When I asked the doctor about side effects from cranial irradiation, he told me ‘Oh, you will be stupider, but you won’t notice.’ What was his name?

The radiation did strange things to my hair

When it all fell out, I got some new headgear

And when the eyebrows fell out, I just pasted on some tomato hornworms I found in the garden.

My friends joined in at a big BBQ and changed their eyebrows – these are Bushy eyebrows

I think most of us who have had cancer live with the fear that the cancer will return. I know I did. Last July ’08, I was training for the Nike half-marathon as an honored teammate of the SLOHS TNT team, when leukemia returned. I had relapsed. This time, I would need a bone marrow transplant.

Twenty years ago, I would have had no chance of getting a bone marrow transplant. At age 53, they would not have even tried it, as such a person could not withstand the rigors of the entire procedure. Thanks to continuing research funded by efforts such as yours, the regimen called CALGB9511 was ready to save me.

When you are preparing for a bone marrow transplant, the first thing is the induction phase, just as when leukemia first struck, to stop the leukemia from progressing while you wait for a donor. This is 3-4 weeks of intense chemo.

Back I went to Stanford, back to F Ground, back in time two and a half years. Thanks to new drugs, I was healthy, but the anxiety of finding a bone marrow donor was ever-present. Some patients die while waiting for a donor match.

After the 4 weeks of induction, I went home, and waited for a donor. On August 14, I found out that I had a great match in my sister Lisa. She is an identical twin, so my sister Leslie was my spare! I had some time to kick it, so I went to a music festival, and then to Yellowstone for some hiking in the backwoods with a friend who is a doctor, and a pirate.

When everything was ready, I went back to Stanford. This treatment was much tougher than the first go-around. This time they kill the bone marrow and completely replace it, starting with out-patient radiation and some very nasty chemo four days before you go into the hospital.

Here I am in the total body irradiation booth. Behind me are little dinosaur stickers that kids have put up while they are being irradiated, and that always inspired me to be strong! Four days of this and I got glowing reviews!

Here is my sister Lisa donating her bone marrow through the relatively painless apheresis method.

Thank you Lisa, you are a superhero.

This is how I looked just after I checked into the hospital, and 5 days later, when the chemo and radiation started to slam me.

I received that bone marrow transplant, a simple transfusion, on September 30, and then the effects of the chemos and the irradiation took hold. I lay in the bed for almost 20 days, fed by an IV of what looked like chicken broth, unable to eat and barely able to drink, barely alive with no white blood cells, red cells or platelets.

On the eve of the Nike marathon in San Francisco, Oct. 18, my wife and son were at the pasta party with the TNT teams. She felt guilty for being there and not at my side, but there was nothing she could do for me. The Central Coast team cheered when my picture came up on the screen. Later the emcee called for a few moments of silence and reflection about the reasons they were all there.

Back in the hospital that very night, the doctors came and told me that my blood counts had ticked up slightly. The bone marrow transplant was engrafting and my new marrow was making blood cells. I would probably live.

I would live to enjoy Thanksgiving with my family.

I would live to visit Zion and Bryce Canyons with my brother.

I would live to see my son Mike graduate from high school.

I would live to hang out with my family on Penny Lane, and roam around Scotland and Ireland.

I would live to visit my Mom for her 86th birthday.

I am now cancer-free and leukemia will not kill me. Once again, thanks to all of you and those like you that have made the efforts to support this worthy cause. Some day I believe this disease will be cured with a shot in the doctor’s office, a shot that will have been created from research funded by people like you that come together and make a great effort.

I did have to change the name of my blog

I would like to thank my fantastic wife Dana, who has been my primary caregiver and who made many sacrifices to keep me going, and the medical teams at Stanford Medical Center and at the Oncology Hematology Group of San Luis Obispo, for keeping me alive.

I have been on this journey now for almost five years, and I have met people that fought valiantly against this disease, but were not lucky enough to find a donor match, and died. So please, if you can, sign up for the National Bone Marrow Registry. Donating bone marrow is now a nearly pain-free procedure, and you can save a life. Again, thank you to all the heroes out there who helped save mine, and good luck in tomorrow’s race!

Thank You, and GO TEAM!

That is the speech and all the slides, just about as I delivered it. The remote for advancing the slides failed me because of distance, so I had to signal (slap my ass) one of the TNT people (Stephanie, thanks Stephanie) to advance the slide. In the end it all worked out. If I can clean up the audio portion of the video I will post it, but probably not here, just a link to it.

Alien vegetables

2009-11-06T06:39:00.000-08:00

"Romanesco" cauliflower

I can't wait for this weekend to be done. It should be a great weekend, but I haven't been able to sleep a whole lot, tossing the whole speech around in my brain. Today, Dana and I will drive down to Santa Barbara, about 90 miles south, to the Fess Parker Resort. We will check into a garden suite for 2 nights, which we get because I was one of the top 3 fundraisers for the SLOHS team. How nice, thank you donors! Check in is around 4:00, get all the race stuff, Inspiration dinner at 6:00, give an inspiring speech at 7:30 or so, and asleep at 10:00. Get up and walk 13.1 miles starting at 8:00, nice cool weather, and the walk is along the beachfront.

It is going to take me about 4 hours, anything less is fine, anything more is fine too. This has been a taper down week, and my hip feels worse than ever. My body is trying all kinds of tricks to get out of this, faking a cold yesterday, ankle aching every day under no strain, body bullshit and I am calling it a liar and a fake.

We get this box of organic vegetables every Thursday from a local farm, filled with good things. This week we had "braising" mixed greens (a bunch of oriental stuff), green colored "Romanesco" cauliflower or broccoli florets, celery, carrots (thick manly tubers), lipstick peppers (to go with the carrots), salad mix, butternut squash, "sierra gold" potatoes, a bag of "Valencia" oranges and a pomegranate.

Every week we struggle to eat all of this, and I end up having to make things I have never tried before. A couple of weeks ago I made apple cobbler and apple pie - the cobbler was good, the pie just ok. Last night Dana braised the braising vegetables in oil and garlic. She ate hers like a bowl of spinach, and I wrapped mine with roast turkey and cheddar in a burrito. I think she had it right.

I started my Literacy Council tutoring this week with a student from Mexico City. He speaks okay English, but needs reading and writing skills. We had some mix-ups on scheduling, and I had to find him parked out fron of the meeting place, in his Lexus. He has been here 7 years and works (worked) in construction, now unemployed and waiting out the economy. Smart of him to upgrade his skills during the lull. We will have a good time getting this done.

I am stepping up and volunteering at the Hearst Cancer Support Center also. I have been going there and meeting with a support group, and started taking Tai Chi Chen. I am the only guy, and the youngest, but it is a lot of fun. Maude from Harold and Maude is in the class. I also went to a laughing class last Monday, and it was a lot of fun practicing laughing.

Saw my Doc yesterday and all is OK. Testosterone level is trashed and I will be supplementing as soon as we get prescription straightened out, so this may be my last week in choir. Steroids are still kicking my butt as far as sleep cycle, but oh well, maybe I should quit all the coffee and Cokes, duh. So, good luck to me, bon chance, buena suerte, I will post the speech with pics when I get back.

Zen what?

2009-10-26T06:30:00.000-07:00

Mo outdid himself this time! Thanks, Mo, I always wanted a Zen garden, but figured I can't buy one, it has to find me somehow. This inspires me to move faster on some of my other projects, like the large driftwood bonsai holder that had termites. I sprayed it last week, and need to stabilize the wood with varnish or something. I have another load of jade tumbling away in the garage, on the second week (medium grit), so a few more weeks to go. I have always had the idea that I would create a fountain of all the jade. I have been giving pieces of it away to cancer patients I meet.

I have been going to a cancer support group at the local cancer support center, and have now met two people that are trying to decide or have decided not to have chemo and radiation, but to fade away instead, they don't want to deal with the pain and sickness. This actually hurts me, but I have to shut up, it is their choice.

Today I will get my Literacy Council student and start out on that journey. I am eager and anxious to begin, knowing that I will have to muster all the patience I can, all the positive energy I can, and especially all the empathy I can. It should be fun and rewarding, zen-like even.

I had my last long training walk yesterday, 12 miles, and I had to go it alone. The scheduled walk/run was Saturday, but I had Literacy Council training all day. I planned to get going at 8am while it was still cool, but one thing led to another and I started at 9:30. It was already in the mid-70s. As usual my left hip was crying in the first mile, but the prednisone and Aleve kicked in and it shut up. The temp was climbing and it probably was up to 87 or so, but I chugged along and finally made the shady Bob Jones Trail in Avila for the last two miles. Various body parts were crying out the last three miles, but I acknowledged and then ignored them.

Avila Beach was packed, but I found a table in the shade at a coffee shop and got a frosty mocha, against the advice of the training manual, and Dana showed up with ice packs and our dog. She says, 'Want to go for a hike on the beach?' Wow, what could I say? So we went to the dog beach, where dogs can go off leash, and Woody was overwhelmed, lots of dogs, lots of balls, lots of fun. It was probably best for me to keep moving anyway.

I love these prednisone-off days, waking up at 4am and charging into all the things that need doing without making any noise. The tutoring is at 7:30 tonight, so I may have to take a nap when the 3pm crash comes. I usually don't, but end up asleep at 9pm. That won't work today.

So if my karma was broken before, I am taking steps to fix it. The poemery about the broken cow in the comments on the last blog was awesome, as is always the case with poemerizing of Manny, Mo and Mac, the Pepcid Boys.

No more bubbles
is what caused my troubles.
In the rag bag
in the shed
I grabbed old skivvies,
what was in my head?
I wrapped that cow
with old underwear,
that it would shatter
I had no fear.
Too small a box, too little padding,
and now the cow is not so fine.
I feel bad, I'm really saddened
that I hurt my karma with that bovine.

Love and Hope and Sex and Dreams

2009-10-23T08:04:00.000-07:00

I'm in tatters! I had this crazy idea (ok, one of many) while I was in Florida . My Mom had this ceramic cow that had 4 parts, front, middle, back and head, and each section had an opening, so it was meant for something like sugar, flour and cocaine, or other dry goods. It was nothing special, made in China and with peeling (and maybe toxic) paint. She didn't want it and I was going to leave it. However, then I spotted a copy of an In Memoriam of Pope John Paul II, and a postcard depicting Jesus, and another of the Virgin Mary.

I had never sent Mac anything to say thanks for all his support, so I packed up the cow with the religious iconography inside, and sent it to him, anonymously. It was a test, to see if he would figure it was a Holy Cow. He figured it out instantly, but the middle section was SHATTERED! I'm in tatters.

M. Jagger/K. Richards)

Shattered, shattered

Love and hope and sex and dreams

Are still surviving on the street

Look at me, I'm in tatters!

I'm a shattered

Shattered

Friends are so alarming

My lover's never charming

Life's just a cocktail party on the street

Big Apple

People dressed in plastic bags

Directing traffic

Some kind of fashion

Shattered

Laughter, joy, and loneliness and sex and sex and sex and sex

Look at me, I'm in tatters

I'm a shattered

Shattered

All this chitter-chatter, chitter-chatter, chitter-chatter 'bout

schmatte, schmatte, schmatte -- I can't give it away on 7th Avenue

This town's been wearing tatters (shattered, shattered)

Work and work for love and sex

Ain't you hungry for success, success, success, success

Does it matter? (Shattered) Does it matter?

I'm shattered.

Shattered

Ahhh, look at me, I'm a shattered

I'm a shattered

Look at me- I'm a shattered, yeah

Pride and joy and greed and sex

That's what makes our town the best

Pride and joy and dirty dreams and still surviving on the street

And look at me, I'm in tatters, yeah

I've been battered, what does it matter

Does it matter, uh-huh

Does it matter, uh-huh, I'm a shattered

Don't you know the crime rate is going up, up, up, up, up

To live in this town you must be tough, tough, tough, tough, tough!

You got rats on the west side

Bed bugs uptown

What a mess this town's in tatters I've been shattered

My brain's been battered, splattered all over Manhattan

Uh-huh, this town's full of money grabbers

Go ahead, bite the Big Apple, don't mind the maggots, huh

Shadoobie, my brain's been battered

My friends they come around they

Flatter, flatter, flatter, flatter, flatter, flatter, flatter

Pile it up, pile it high on the platter

Muggy mug, as they say

2009-10-18T08:08:00.000-07:00

Friday
It sure has been a sweaty week. I am in Tampa airport typing this. I just spent the week packing up my Mom's personal items from her Florida snowbird house and shipping them north, and making the place saleable. We may have a buyer on the line, we'll see if I get the contract tomorrow.

Good old USAir forgot to load the pilot's cabin with oxygen on Monday, so I got to hang in Phoenix for an extra 5 hours, landed in Tampa at 10pm, and made it to Estero at 1am. Luckily I had plenty of time to get everything done, wrapped it all up this am at 11, left my bathroom kit and bag of chocolate chip cookies sitting in the driveway, and drove through 2 hellacious rainstorms (squalls) that lasted about 5 minutes but were treacherous.

It was cooking hot and muggy in Estero, in the 90s on temp and humidity, but I had the AC cranked and work to do inside, so no matter except when I tried to do my walks. Luckily it is a 'rest' week, meaning only 3 mile walks.

I drove through two squalls on the way to the airport. It was pouring so hard I got the Corolla I rented airborne off the wake of an 18-wheeler I passed at 80 mph, did an Ollie off the guardrail, and right back in the fast lane. Pretty smooth, as they say.

Sunday
Been up since 3, who needs sleep? Troubling times, trouble in mind. I think my old cat is lying out in the yard somewhere, dead. Woody has been having nightmares this morning, lying here and moan/barking (barmoaning?). Does he know something I don't, in tune with a fellow animal? I'll have to go look for Figgy.

Instead of doing the 7-mile training yesterday, I went to a 5 hour Literacy Council training session, so now I can read and maybe help somone else to as well. After next Saturday's training, that is. So I had to do the 7 miles yesterday, and ran out of daylight and only did 4, and now I have to 3 today instead of rest. Next Saturday I will have go 12; the whole week is very tough with a total of 32 miles, yikes, my hip is crying out. Just when I need those steroids they are being stepped down.

We may have reached the lower limits for a while, because that mucositis in my mouth that was going away is lingering at an annoying level, and my eyes are still dry as a Utah BBQ. It finally rained here in SLO, while I was in Forida. Our umbrella took flight and landed next door, with no injuries. We thought Mikey was inside the umbrella, but it turned out he was hiding in the trundle drawer under his bed. FOX news was going to get this live, but found out we didn't subscribe to Conservapedia and that was, as they say, poop without a fly.

The finches in the yard have winged their beaks, as they chirp, at the new lot of seed I bought them. I had to return it all and get the preferred and pricier nyjer thistle seed, sheesh, picky birds. I guess here in the 'Arbors' (chirped while looking down their beaks), they have other options, so walk the talk or take a walk, as they say.

By the way, if I see them, I mean them they who say, I will display, so to say, some dismay at their way of having so much to say, enough said.

Speaking of which, if you didn't see the poemerizing from Mac and Pat in the last post, go back and read it. Oh yeah, I researched who owns what, and what you post in a blog is yours unless you give that right away, as many sites make you do by having you check some box. Who reads that crap, as they say? So anyway, I will be sending all you commenters a contract that you will have to sign to get your cut of the action, your piece of the pie, as they say. It will look like this, but don't worry, just sign it and send it back:
I hereby agree to give John Fiore all rights in regard to everything I ever write, and any money I ever make or have. Agreed, check here.

I have to get a smaller font so I can be more verbose and cut down on mailing costs, further spurring our economy. Always happy to do my part, as they say. This week's cancer writing prompt came with this cheery poem:

Larson's Holstein Bull

by Jim Harrison

Death waits inside us for a door to open.
Death is patient as a dead cat.
Death is a doorknob made of flesh.
Death is that angelic farm girl
gored by the bull on her way home
from school, crossing the pasture
for a shortcut. In the seventh grade
she couldn't read or write. She wasn't a virgin.
She was "simpleminded," we all said.
It was May, a time of lilacs and shooting stars.
She's lived in my memory for sixty years.

Death steals everything except our stories.

Monday quick update

I found Figgy down by the creek out back of my house yesterday, and went down there to get her. She was still alive but looked very bad, and I didn't want to leave her for the crows or raccoons, so I carried her back to the garage and put her in her bed. I just came back from the vet, and they agreed that she was beyond repair. I will bury her ashes in her favorite yard spot, goodbye Figgy.

On a lighter note, I forgot to mention my washing machine adventure on last Friday morning. I woke at Mom's in FLA around 5, and decided I should start cleaning the sheets and towels I used. Normally I leave my dirty clothes until I get home, in case anyone tries to steal my stuff and can be warded off by the odor, but also because I am generally vacationing when I am travelling, so why use vacation time to clean clothes?

In this case, I had a half load, so I threw my dirty clothes in, started the machine, and it filled up. Then, when the cycle kicked to churn, the motor made that sickening smell of $$$ burning, and the breaker popped. Aaaarrrgggghhh! I saw the slack time built into the schedule going away.

I started taking out the clothes and sheets and towels, wringing them out and putting them in a hamper, to go to the laundromat. I then hand-drained the machine, and with about 6" of water to go, I was about to take off the outer skin and decided to try the machine without much load. Lo and behold, it drained, so I tried a short cycle with no clothes, and it worked! Back in went the laundry, and all was fine, disaster averted.

There is some lesson in there about how to start up things that have been sitting idle for a time. I think there was probably a small rust buildup or lime crust that needed a gentle nudge to knock off.

Make sure you check the comments; I am miffed to find I cannot make money on Manny, Mo, and Mac, the poemerizing posse.

Rocky start

2009-10-08T11:26:00.000-07:00

Some years back Mo sent me a walking stick inserted through a rock, very cool use of the items always at hand. I may have mentioned in some old blog that those were our essential toys as kids, a stick and a rock, and Mo has this company, 'Sticks and Stones' that makes 'Walking Sticks That Rock'. He is at sticksandstones@surfglobal.net. So, as I said a few posts back, here is a picture of the interactive 'Stones and a Stick' piece I sent to Mo, and which he has placed in a Zen sand garden. This is simply some driftwood and some polished jade. Awesome.

We seek feng shui,
but in our own way

we hope that feng shui

finds us.

For many years Beauch and I have been going up to Plaskett Creek Campground, about 70 miles north, in Big Sur, surfing at Sand Dollar Beach, and hiking down into Jade Cove to collect whatever jade we could find. This is California jade, nephrite, not nearly as workable as Chinese jade, jadeite, because nephrite is harder.

Google Earth shot of the area, Jade Cove on SW of pic, Sand Dollar beach on NW of pic

Sand Dollar Beach

A pretty big chunk of jade at the Jade Festival

In the early days we found some pretty nice pieces of jade by scrounging around in the coves. Divers would get the big pieces such as the one above, called 'Blue Angel.' The increased popularity of this spot (thanks to the internet and word of mouth) has Jade Cove pretty picked over, and the campground has changed from first-come first-served to half reservations, so now we don't go there until right after a big storm in the winter. It's wet and cold, but the storm will churn up some jade, and we do the dance with the waves and end up wet and little jade.

Jade hunting is just a meditative ritual anyway, and I have a bunch and Mike has even more. I finally got a decent tumbler and it is tumbling away in my garage right now, and when I have it all done I will give the tumbler to Mike. He likes his jade in its natural state, so he may not use the tumbler, and then I will sell it.

The annual 'Jade Festival' is this weekend, and we may day trip up there on Saturday, although I am bored with the festival (it's pretty small and nothing new) but it's a nice drive. A bunch of hippies and kooks and rich Monterey people buying rocks will be there, grooving to the music.

With all the money we are going to make turning this blog into a bestselling book, Mo is going to make us a two-masted sloop, the 'HolyCowKetcher', and all of us will write the sequel to 'Holy Cow', about surviving at sea with a bunch of loonies. Mac will be blasting my mucositis with down home cooking with Ho-spice, grilled on his converted Dell laptop. Mo is playing guitar, Pat riding the bow waves and playing with dolphins, and Manitouboo and Jeanne sunning herself, and I will man the poop deck. I know I have mixed up a slew of nautical terms; can I steer from the poop deck? Does anyone need to steer? Where the heck are we going? We may need a bigger boat.

Obviously I am still in the grips of prednisone. It's almost 5 am and I've been up since 3. Every other day doses means every other other day early awakening. I'm good on 5 hours, I guess. Maybe a bit rambly and jangly, but I am here.

The writing prompt at 'Writing Through Cancer' this week was 'Nature offers us many images and metaphors to describe the emotions and experiences of cancer on our lives. Think about your cancer journey, the seasons of survivorship, the seasons of life, of nature. What images or metaphors come to mind? Write about seasons, wherever they take you.' So, my mind spun out and I wrote this.

In 2002 I was living in Frigiliana, Spain, an Andalusian hill town. We had rented an old house near the top of the hill where the Moors had made their last stand as the Christians took back their country. In that last stand, the Moors were at the top of the hill, and when it became apparent they would be overrun, the women gathered their children and leapt to their deaths off the cliffs at the back of the hill.

In our yard in Spain there was an old lemon tree, twisted and gnarled but still producing lemons. One day my brother called to tell me that our father was very sick with cancer and probably would not recover. I asked how long, and he replied ‘Weeks.’

Soon after, we had a tremendous windstorm, and when I looked out at the yard in the morning, the old lemon tree had cracked down the middle. I asked the landlady if she would have it mended; half of it was salvageable. I came to think of that old lemon tree as a symbol of my father. The gardener came and cut down the tree. My brother called again and told me to hurry home, time was up. When I arrived I was too late to say goodbye to my father, he had died.

Rocks, sticks, trees, earth, sky. Makes me think of an e.e. cummings poem I love.

anyone lived in a pretty how town

by e. e. Cummings

anyone lived in a pretty how town
(with up so floating many bells down)
spring summer autumn winter
he sang his didn't he danced his did

Women and men(both little and small)
cared for anyone not at all
they sowed their isn't they reaped their same
sun moon stars rain

children guessed(but only a few

and down they forgot as up they grew

autumn winter spring summer)

that noone loved him more by more

when by now and tree by leaf

she laughed his joy she cried his grief

bird by snow and stir by still

anyone's any was all to her

someones married their everyones

laughed their cryings and did their dance

(sleep wake hope and then)they

said their nevers they slept their dream

stars rain sun moon

(and only the snow can begin to explain

how children are apt to forget to remember

with up so floating many bells down)

one day anyone died i guess

(and noone stooped to kiss his face)

busy folk buried them side by side

little by little and was by was

all by all and deep by deep

and more by more they dream their sleep

noone and anyone earth by april

wish by spirit and if by yes.

Women and men(both dong and ding)

summer autumn winter spring

reaped their sowing and went their came

sun moon stars rain

On November 7, I will finish that half-marathon that I have been working towards, and I will have given my speech. Soon, I won't need to see the doctors more than anyone else, and the medications will be done. This will be a funky period, the end of an era (it better be).

So now I am pondering my next act. I don't see anyone hiring me, a 54 year-old two-time cancer warrior with big holes in his resume and memory. I am not looking for advice; I know it's on me to come up with something. I will start with volunteerism and take some classes (tai chi, Spanish, embroidery for my xx chromosome blood) and ponder yonder. I can still do the daily jumble in under a minute, sometimes ten seconds, but who cares? Look what that did for the Rain Man.