WHEN THEY GO AND YOU DO NOT
A BLOG AND PLAYS ABOUT
DYING AND COMING BACK TO LIFE
Susan Merson
When They Go and You Do Not: A Blog and Plays About
Dying and Coming Back to Life
©2011 Susan Merson
ALL RIGHTS RESERVED
No part of this book may be reproduced in any form, by photocopying or by any electronic or mechanical means, including information storage or retrieval systems, without permission in writing from both the copyright owner and the publisher of this book, except for the minimum words needed for review.
The plays, Recognition, Carla Tells Us What Happened in the Blue Bedroom, and When They Go and You Do Not are works of fiction.
Any similarities to real places, events, or persons living or dead is coincidental or used fictitiously and not to be construed as real.
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Paperback
ISBN: 978-1-935188-41-4
Ebook
ISBN: 978-1-935188-42-1
Edited by Janet Elaine Smith
Cover by Star Publish and Susan Merson
Interior design by Star Publish
A Star Publish LLC
[blocpress]
Publication
www.starpublishllc.com
Published in 2011
Printed in the United States of America
Dedication
To those who lived, supported and loved us through this transition,
well, grateful isn’t big enough a word.
We all made it and we are all changed.
To our beautiful daughter, Sofia Angelique. A record of a time she knew too tenderly and too young.
And to my beautiful partner, husband and friend, Tony Shultz, who wanted this story to be told.
October 2011
TABLE OF CONTENTS
FROM THE BEGINNING TO THE END TO THE BEGINNING
An essay of transition by Rev. Jane Stormont Galloway
WRITINGS ON TRANSITION by Susan Merson
INCH BY INCH: the journey of the prince
RECOGNITION, a one act
CARLA TELLS US WHAT HAPPENED IN THE BLUE BEDROOM, a monologue
WHEN THEY GO AND YOU DO NOT, a solo piece
Introduction
FROM THE BEGINNING TO THE END TO
THE BEGINNING
An essay of transition
From the moment we breathe our first breath we are going through one transition after another. It interests me that so many are so afraid of change, as the nature of being human is one of constant evolution.
I was in The Gap the other day and heard an infant in a double stroller crying bitterly as the mother struggled to get her baby-wrap in place to pick her up. The scene was interesting for a few reasons: one was that the baby had a sister of about 2 1/2 years old, who was playing with a computerized game dispassionately as the baby cried to the high heavens, alarming all of the shoppers in The Gap.
There was a bigger story there. I saw a dynamic which would no doubt play itself out in a million ways over the years...sibling rivalry, an overwhelmed mother, the works. But here was the interesting part to me. The second the mother picked up the baby, it stopped crying.
I mean the second...not a couple of snuffles and then some quiet.
Instant peace. I was vicariously comforted by the power of that obvious connection to Source which was, in this case, Mommy.
I recognized in that bonding scenario the feeling for which I seek in moments when I am called to transition out of the familiar—again—and to step into the unknown.
But I digress.
The question of what is different about later life transitions is one which presumes that we have all conquered the developmental stages which prepare us for the almost continual loss of later life.
If we have, we have probably endured at least one loss from which we thought we would never recover. Sometimes we don’t make it. I have met women who simply stopped living after a divorce, or the death of a parent or child, spouse or beloved pet. I have studied why people sometimes just get stuck, stopped at some loss or other, and can’t move on. I have learned that these are frequently the people who become hoarders. As if setting an archaeological dig in place to hold the possibility of the loss reversing, hoarders create a layer of the lost person’s clothes, furniture or belongings. They keep newspapers and books and old receipts, as though perhaps the lost one will come back to claim those days or hours and want a record of life to be in place...a record of life lived while they were away. These are the people who stop, who cannot bear the pain of letting go. I have been told by a reliable authority that the largest mental health issue among seniors is hoarding.
We do not live in a society in the United States in 2011 in which getting older seems to bring a feeling of happiness. The extended family system has broken down, seemingly irreparably, the healthcare system is not geared to holistic treatment and the culture is focused on everything young. The wisdom of the elders is not sought out by the vast majority. And so the most sensitive among us sometimes choose to surround themselves with the artifacts of a more connected time. Others just lose their minds for real and go into a state of memory loss or detachment or mental illness for which we have many diagnoses. But I have a feeling we would have fewer diagnoses of dementia or idiopathic mental illness if we had greater esteem building and comforting and welcoming resources for our older citizens.
And then I have met the people I think we are interested in here. That group would include me. I think the best way to describe us is as survivors who become thrivers by being willing to go actually live through the excruciating pain of one loss or another and stay conscious.
Why do we come up against the same crises, the same agonizing losses and somehow manage to hold onto something larger than that loss?
In my own life I have shed several different versions of myself over the years. I shed the young woman who wanted more than anything to be loved when I faced the demise of my first great love. I had a choice to either go with him into a life of ashram living and guru worship or to step out alone, into my passion, which was then acting. And I chose to step out alone. I shed the young actress and the older actress and I shed the New Yorker. I shed the not-so-young woman desperate to have a child, and I grieved the loss of that dream by also shedding a very deep sense of connectedness with the husband I hoped would father that child. I shed the happy story of a passionate student returning to graduate school to stand in the truth of a sexual harassment situation at that school. I dared to defend myself and other women and our right to be safe to learn in previously male dominated professional settings and halls of higher education.
I could chronicle many of the points along the trajectory of my life in which I was faced with a similar crushing loss or seemingly catastrophic decision, but as I reflect upon them, they all are essentially the same.
They were each moments in which I was given a horrible life moment, and presented with the choice to either go with the path of seeming least resistance—whatever that was at the time—or to reconnect with the inner guidance point and inherent integrity which defines me.
Each one of those moments required a shedding of some former version of myself which felt safer than the unknown.
But the unknown became less unknown because of the earlier transitions I had lived through...to tell the tale, to see a young woman be inspired by my courage or something I could help her see. And so far…I have chosen to listen to the deeper voice, to my “gut,” even when it felt so scary I could almost feel the resistance to it in my bones.
I allowed the life stages I wanted to be my story to become the life stages that really were my life. And there was loss, and more loss, and then—new gains, a new sense of mastery, of purpose, of willingness to stand in my own truth. I shed those earlier identities but I did not lose their lessons or the gifts they gave me. I am those earlier identities, but I am more than the sum of their parts. And progressively I have begun to meet the woman I really am, and to recognize her as separate from the woman I wrote the story about...the one my script wanted me to be.
I’m actually starting to like getting to know her—well, me.
A sense of self.
It cannot be bought, though therapy can be paid for, and probably helps a lot. It cannot be bestowed upon one by anyone else, though God knows I and many of my women friends spent years trying to find the perfect Prince Charming to do the deed. It cannot be taken away either, but that is a tricky one. Because it seems that it is always a letting go which allows us to keep ourselves. And at each moment when that is required, it feels scary all over again.
I thank God for my friends. I thank God that I know a few people who really know me and who remind me of who I am when the darkness threatens. And ultimately I thank God for God. Because that Mommy in The Gap is really a surrogate for our deeper connectedness to our Source.
On my way to Goodwill. Gotta shed some stuff. Can’t wait to see what tomorrow brings.
My friend of 40 years lost her husband to Mesotheleoma.
It was a shocking and unbelievably fast loss.
It was a loss that intruded upon a complicated relationship between husband and wife who were mid-dialogue about their relationship.
And it was a loss that left Susan a widow.
I will never forget seeing her at the funeral as we saw Tony for the last time. Who was she now?
Susan was consumed with grief.
She shrugged her shoulders at me as my husband and I filed by Tony’s casket, as if to say, “Look at this! How did this happen? How did this become my life suddenly?”
And then at the reception following the funeral I saw the resilience which I knew to be the essence of my friend.
I was having a conversation with our mutual friend who told me that her plastic surgeon was having a sale on a procedure both Susan and I were interested in.
Suddenly the grieving widow—my friend Susan—jumped into the middle of our conversation and said, “Yes, Janie, Dr. B. is having a sale! You have to check it out!!”
And I knew my friend would find her way back.
These plays are representative of her way back, and through, and into to a new normal.
I lived some of this with her. I watched her tackle the forces that were trying to pull her into despair, and triumph over them.
And now you will be the recipient of some of the lessons of that journey back.
These are magnificent pieces, and they are made even better by the fact that they are art made from the ashes of a life...used as the foundation for the next life.
You will be changed in the best way possible as you read them.
Rev. Dr. Jane Stormont Galloway
Mandala / H’’artWorks
Journey/Wholeness/Artistic Expression/Integrative Healing
Rev. Dr. Jane Stormont Galloway, Founder/Pastor, Mandala Center for Conscious Living, Founder/Executive Director, H’artWorks, Inc., has long been passionate about healing the communities around her. She is a 30-year career actor, educator, and counselor with a specialty in addictions recovery and therapeutic theatre. She’s a community builder/activist who focuses on social justice concerns, including AIDS treatment and support services, mental health and holistic healing for all ages and abilities. Ordained in the AME Church, she is now a minister in the United Church of Christ, and has both Master’s and Doctoral degrees from Claremont School of Theology.
In October of 2000, Rev. Dr. Jane founded Immanuel Center for Conscious Living in Long Beach, an Ancient Wisdom/New Thought congregation affiliated with the United Church of Christ and is also working in collaboration with Agape International Spiritual Center. Immanuel is a transcultural, open and affirming spiritual center, with a focus on social justice and on using the Arts, Spiritual Practice and Selfless service to open people to their inner magnificence. In 2001, Dr. Galloway founded H’artWorks, a 501 (c) 3 Arts and Education nonprofit which serves the students of HoraceMann Elementary School—a Title One School—and other youth who would not otherwise experience excellence in arts training. She has succeeded in creating a neighborhood center focused on providing a “home away from home” where youth have access to technology, arts, job training and mentoring in a safe, supportive environment.
Dr. Galloway’s vision for the community of Long Beach is larger than her passion for the arts, greater than her devotion to the mentally ill and differently-abled, wider than her dedication to addictions recovery. Her vision for Long Beach is to empower it to become the model by which the rest of the country, and world, will follow—a model for peace amidst diversity.
She has focused unflinchingly on encouraging open communication among the many groups in this “most multicultural city in the United States,” and beyond. It is Dr. Galloway’s emphatic belief that by focusing on the commonality of humanity, while honoring the individuality, Long Beach will be successful in establishing a Beloved Community where diversity is embraced and celebrated, and not the source of division and destruction.
the journey of the prince
a blog
December 28, 2007
HELLO AND GOODBYE
Hope this finds everyone well and readying themselves for the new year.
We are facing a new challenge in our family and we wanted to let you know about it now though our information is basic. Sorry that we have to do this via email, but phone calls are a bit difficult at this point.
Tony had been experiencing some difficult breathing and health problems in the last few weeks, though the heart arrhythmia problem has always been the thing that we thought would be of most concern.
We were very surprised to learn that he had developed fluid on his lungs which was initially identified as pneumonia about ten days ago. The fluid was drained and no bad elements were found but we proceeded to biopsy because a CT scan showed a background akin to Van Gogh’s Starry, Starry Night—
We were also surprised and distressed to find yesterday after the major lung biopsy that his right lung is full of cancerous tumor. Actually the quote from the thoracic surgeon is “sheets and sheets of tumor.”
We know very little more at this point in terms of prognosis or treatment.
Today we have a confirmed diagnosis of Mesothelioma—the asbestos cancer—usually the gift to construction workers or Steve McQueen clones; but now confirmed as filling the right lung of my handsome husband.
Go know—
So, he is now resting and healing from the biopsy and should be home from the hospital by Monday or Tuesday. We will meet with the oncologist on Thursday and then we will begin to get more of an idea.
Mostly, Tony wanted you to know he is fine, clear eyed and seeing every and all parts of the equation and we are taking everything exactly one moment at a time.
Please feel free to tell whoever might need to know. Tony is clear about that, too.
I won’t be answering the phone too much in the next few days, but email is always good.
We are surrounded by lots of loving friends and very smart doctors and now we need some prayers.
Hope to be in touch with everyone soon. Once he heals from this surgery, visits probably welcome. To be continued and much love from us to you.
January 3, 2008
HERE IS WHAT WE KNOW TODAY
Thanks are just a part of what everyone in our full and lusciously endowed community deserves. Just know how important that love and light stuff really is—
The beauty and support of every shoulder and every sigh does really ease the load, so count on me when your time comes—because we know these times come to us all, one after the other.
And here is where we are today. Mostly Tony and Sofie and I are solid and strong, enjoying the true weirdness of living and its violent perfection.
T and I went to the doctor today. The oncology center to the stars complete with cappuccino and cocoa makers. Felt like Willy Wonka and the Chocolate Factory with a great deal of living happening in every corner. They strike just the right note, but we won’t be spending much time there.
The cancer is now clearly in Tony’s left lung as well as the right. The liquid excreted night before last in the ER was indeed pleural liquid giving us a preview of this fact. Options were limited to us.
Surgery, awful and not an option since it is spread. Chemo would extend his life perhaps a month or two at best—and those months full of poison pumping and hours in a clinic with IV’s and phosphoresence—” Why rake muck”, as Buber says, “when we can be stringing pearls to the delight of heaven?”
Bottom line is. Anywhere from 6 months to a year at the outside if we are lucky.
At this point and this may change of course—Tony has decided that, after the fabulous Evelyn model, he would rather live his life than run after it. He wants to feel good and celebrate with friends and family and take care of business and have the joy of all that until that doesn’t work, and then we will have hospice here at home and all usher him over. I am fully in support of this decision—we all feel good about it.
There is no cancer warrior game to play, We have other things to do with the time we have. Fighting for fight sake gives very little return. Please understand that. We are not in the pep talk realm. The CT scan was immensely clear that there is nothing to “go for”—except beauty and joy and time together.
So we are going to celebrate and enjoy each other and laugh and cry and drink champagne for now and do what we can, and then when soup and low voices are in order we will do that too.
We love and value each and every one of you. We look forward to your support. Email remains the best still but things will have an odd normalcy now and evenings are good to come by for now. We will just play it as we go. Do check in by email if you’d like.
Sofie is fabulous and clear and she says she’ll be around until we all make her sick and then she’ll head out to be with friends.
We came home and all sat together and talked it all through together and then had a good lunch at the Grand Luxe and T had a huge chocolate shake and fries, fuck it, and tonight Sof and T will watch some football together and hang with whoever comes by.
So we are good and we are strong and we are full of life and living and we know you are too. Feel free to pass this info around.
And we hope to see you or talk to you when we can. Me, being the curmudgeon I am and T, enjoying the fruits of his life—your friendship and love and support to the next months of adventure.
Sofie needs to get school work done and we all have jobs to do.
Much, much love
4 AM Thursday the 9th of Jan, 2008
REPORTING IN
Since Thursday we have been
1: drinking and eating an enormous amount
2: laughing raucously and fully
3: appreciating the fine tuned madness of excellent scotch
4: doing dishes and washing floors
5: talking too much and sleeping too little
6: feeling good and right about our decision to opt for quality of life,
Tony is
1: handsome, elegant, centered
2: taking care of business, attending to details, working as much as he can and
3: driving his excellent Audi and wearing his elegant brown cashmere coat
4: having massage
5: squeezing my hand when requested.
6: feeling pretty good and
7: just yesterday started feeling a little tired
Medically, we are—
1: coordinating doctors and seeing another maven surgeon at UCLA who has dealt with Mesothelioma exclusively for many years
2: researching clinical trials that might extend life without impairing quality of life
(Though frankly I am feeling that may just be prolonging the agony- go know)
3: getting too many cooks in the pot and finding it a challenge to leave too many fucking messages on too many phone lines and all that jazz.
Business wise—
1: Tony is getting all his business stuff handled
2: We are meeting with appropriate folk about all the stuff
3: I am filing too many papers in too big a notebook with too many details
I am trying to sort thru legal issues and marveling at the sleaze factor of “foundation” sites that set themselves up as purveyors of medical information and then turn out to be fronts created by law firms who are courting victims of the disease as possible litigants against the manufacturers of asbestos products. Money talks, kids oh you betcha. Sure I want some, but oh you kid, a real nausea factor there. To be continued.
Sofie is
1: fabulous
2: back at school and getting the work done
3: getting the support she needs
4: being pretty magnificent in all ways
You are
1: being wonderfully supportive, cooking too much food,
2: seeking “occupations” that will relieve the itchy horror of this inevitable terrible journey for yourselves and us
3: sending us love and light and information and care and bad jokes
4: being just exactly perfect in your perfectness and friendship and respect of history and your own journeys in connection with our own histories. This journey is everyone’s. It connects with our own personal searing slashes of life—everybody has those—and in going thru this with us everyone steps a bit closer to healing their own pain.
You can
1: read this blog and stay tuned
2: know that you are on the list for counsel, food, help when we need it
3: stay connected with love
We will probably go to a weekend celebratory mode next week. During the week we’ll keep it low key and keep the place as sane as possible for homework and rest and small events and on the weekends we’ll go to an open house thing where everyone who wants to can come by and eat and act inappropriately and laugh and talk and all that. We will do that as long as that makes sense and then we will do the next thing.
THIS WEEKEND
1: we are family-ed in with sister Cindy in town, so stay tuned for more info.
2: I will try to post as often as I can.
There we have it.
IN THE INTEREST OF EASE AND DELIGHT
So, in the interest of ease and delight, I pass along to you, courtesy of the fabulous Uncle Andy, courtesy of YouTube, the following meditation which I highly recommend for all of us.
http://www.youtube.com/watch?v=8p3lPw3LmKQ
Lovely niece, Hannah and Tony’s newly skinn-ily and even more fabulous sister Cindy have been with us all weekend. Cindy filed some horrid papers for us.
I have hired an assistant for the duration.
Had a long sleep ‘til 7 AM. Tony Shultz is watching the game, snoozing all day today until a family gathering at 4. We see the lawyer on Monday morning and I am getting even more nauseous at the research we are starting to see on some of the contaminants in glazes etc. in ceramics studios in the late 60’s now to determine if that glaze was in that studio at that time.
Ah, click the link.
It’s Saturday. A day of rest.
xxoo
s
SUNDAY JANUARY 13, 2008
SO WHAT CAN YOU BE AFRAID OF,
LET US COUNT THE WAYS
Okay, another chink lower into the reality. A little slip lower, closer to the pit of knowing.
10 PM, Saturday night, sitting on the couch, watching the news, that was the moment.
We hit the ground running tomorrow, head to our first legal appointment and revisit the oncologist. Are there clinical trials?
Hope, let’s see what is hope. What is worthy of hope? What is grace, fighting, acceptance, joy...? Wow—there’s a clinic in the Bahamas, we could get a house and all hang at the beach, yeah! Or maybe, Vancouver? It’s rainy this time of year... hmmm
Indigestion of the soul.
So—we looked at each other last night and we figured it out. We were really afraid. We both knew. We were shy around it. Like maybe we shouldn’t let it know we knew it was with us—fear. But then, what have we got to lose anyway- so T says to me:
“I’m afraid, Susie. Are you afraid?”
“Yes, are you afraid?”
“Yep.”
Silence.
“I just said I was afraid”
Beat. Beat.
“Oh, right. Sorry.”
“So, what are we afraid of, do we know?” says T, just-the-facts man
“Yep, I have a really long list—” and I listed at least 27 things, and maybe then more.
It was a clattery rattle in our little living room and T said:
“Wow, you have a really long list. Mine is shorter.”
“But you’re scared-er, right?” I said
“Right.”
Hmmm. We looked around and see if fear heard and then said fuck it.
Who cares. No news there.
“Okay, let’s go to bed, okay?” says T.
“Okay,” I said.
And we did and we were still scared and we still slept thru the night and we still woke up and now it is a beautiful Sunday morning and I have a headache, and Sofie has gone off to pals, and Tony is watching football with his sister, and Hannah is cleaning the kitchen.
And we’re still afraid.
And we’re still here.
And so are you.
And it’s all okay.
Talk to you tomorrow.
MONDAY JANUARY 14, 2008
STAY TUNED
Stay tuned! The waters are changing, the crystal ball is fogging up and shrieking so deeply insecure because it has no fucking idea what to predict. What’s a fortune teller to do???
Ah yes, fellow travelers we have a new wrinkle to predict a new possibility from old news and who knows what the answer might be....the SHADOW Dooooooooooooo….
More when there is more. Right now, clouds and sunshine and umbrellas and fog, and sweet lawyers with baby faces this morning, and dour faces of sweet doctors with new possibilities and “jump down turn around picka bale of cotton, jump down turn around picka bale of hay”— Harry Belafonte sang that one.
But we’re still here—we’re still here—isn’t that a Stritch line??????
Oh, and we’re all fighting today. He hates me, and I hate them, and She hates us both, and we’re still here!!!! We’re still here!!!!!
Hang onto your hats, we’re in for a bumpy night!
For a year or two?
Oh, and T wants to know, if he hangs around for an extra twelve months, will he still get all those great cartons of Starbucks Java Chip everybody has been showering him with??
Always a consideration, you know.
TUESDAY, JANUARY 15, 2008
SO, A PARADIGM SHIFT FOR US.
Hello friends,
A busy day for us...errands and lunch at the Bel Air hotel for T and me being super Mom and both of us ending the day with massage and warm thoughts.
Yesterday was a big day. We met with the lawyer about a possible claim against possible asbestos exposure manufacturers. The lawyer is this sweet faced killer (I hope) who has a brother who is a lighting designer. He’s a nice Yiddisha boy a little too nice for his job but T felt good about him I think and we signed on the dotted line. Then Tony got to tell his WHOLE work history as a stage technician and despite the fact that these experiences are killing him it was an enjoyable exercise for both of us, for T to remember all those theatres and light cables and catwalks and girls, and flats and hammers and painting jobs and girls and ceramic studios and culpable glazes and airplane parts and yes, of course, girls.
So, we now leave it to the lawyer to see if he can make any official connections and the only thing T has to do is a deposition in the future and either it will work or not but that’s done.
Then, on the medical front we had a hell of a roller coaster day with everything from a possibility of many years, to the possibility of being a “pulmonary cripple,” to the possibility of dying in two months to where I think we have landed which is probably, that:
There is indeed a confirmation of cancer in the left lung. Therefore, we will not do a biopsy there to see if it could maybe be inflammation—fantasy island surgeon stuff—that the surgeon was hoping would allow T to consider a horrendous surgery where they remove the entire right lung, the lining, the Pericardium (that’s the lining of the heart) and then maybe—just maybe, if you live thru the operation, just about the time you recover from surgery you’re dead from exhaustion or worse...Soooooo, frankly, I am very pleased that that is off the table.
And now so we revisit chemo and we are now being told that it might even give T another complete year so okay— they have lots of nausea drugs, and I think I can convince him to go Jacques Brel with a black beret and it may even get him to Sofie’s graduation!! So hell—we’re going for that.
Soooo, a couple more tortuous meetings about possible scenarios and then I think he will start the standard Cisplatin and Alimta chemo thing and we will see how it goes—
SO WE ARE NOW IN THE PARADIGM SHIFT FROM DYING FROM CANCER TO LIVING WITH CANCER (READ VOLDEMORT) BUT THIS ONE TO BE NAMED AND FACED
So, that means, sharpen your pencils and get out the cookbooks because we got a hell of a year to be living thru and we are available for social occasions, weekends in the country, dinners, lunches, brunches, football, snoozes, beach breakfasts and other quality celebrations of all kinds including periodic weeping and massages and pots of soup and volunteering to do the dishes.
Who knows how it will go, but here we are and there we’ll be...with your help and love and support from which we are already eternally altered for the better.
Blessings all.
Stay tuned
Love
WEDNESDAY, JANUARY 16, 2008
LIVING IN DARFUR
So, okay then, lovely dinner last night.
We get home, climb into bed, I’m feeling a little not so sure about my stomach and in the middle of the night the flying monkeys of the fearsome flu visit and I crawl out of my conjugal bed and away from my sweet husband to the office where I can ache in peace and roll around with flu-ish Jewish detail and wave at T thru the window when I awake in quarantine and not wanting to breathe in his direction and then read my email with an update on almost relative Ed Ethridge, who out of nowhere is struggling with a massive heart attack stroke thing that came from the same fucking flying monkeys dive bombing just for fun…..
and then
I call my big sister for comfort and a little “oh poor baby” and then I hear that my big brother was in the hospital this week with a detached retina and nobody would call me ‘cause I’m the suffering spouse person and I’m thinking this is what it must be to be a person in Darfur where all you need is a little firewood to warm up the gruel and instead you get whacked by the crazy tribal madmen when you dare to venture out into life.
Phew.
So, man oh man—everybody has it. And the only way we get thru it is to share it and shake our heads and keep on keeping on.
I thought of this as the vitamin drip I summoned to cure me dripped into my veins and my husband was at home in bed and my brother was recovering from the hospital and my almost relative Ed is struggling in the ICU and it was my Mom’s 89th birthday just yesterday—which she missed because she passed over in August. Peaceful but too scared.
And tonight George Bush said it was okay official policy to keep pumping sonar into the waves to disorient the whales and dolphins and NPR featured that story on the UFO coming down for a look.
Wow. Congratulations on being on the planet right now, we’ve got a whole lot of keeping on to be keeping track of.
much love
THURSDAY JANUARY 17, 2008
THE RESPITE
So, my gorgeous husband stretched out on sofa like the handsome cat he is, raises his arms above his head for an extra inch of air—ah! And we talk—easy—settling into a little normal rhythm before the next storm.
I’m still recovering from flu and am cozy in pajamas not breathing in his heavily Maitake mushroomed vicinity and we just talk—like normal people after dinner, dishes in the sink, cat meowing and dog in a dream.
So, he’s all healed from the biopsy. He is well now, energy full-ish, working every day reveling in all the laudatory tributes from pals far and near and I say,
“So, what do you want to do now? The next year, if we get it,” I say,
“What shall we do?”
So he says:
“Friends. That’s what we do. Like the day we first got the diagnosis and we were walking on Wilshire Blvd dazed and thinking about death. That’s when I got it.
I can’t go walking around thinking about death. All these guys on the street, they’re not thinking about death, they’re living their lives. So that’s what we’re gonna do. I’m going to go to work and eat great food and lots of ice cream and do as many gatherings as I possibly can. No dreamy weekends isolating in the woods (he looks at me, the isolate, desperate for silence and solitude—okay, okay)—no weekends on lonely islands or quiet walks in Ojai. Nope, I want to be with friends and see my life.”
So, it’s the quiet now before the next bump. We are stretching like lazy cats and waiting for the next thing but for now we are here and there and everywhere. Gospel at the temple tomorrow, football on Sunday,
Saturday is open if anyone wants to play (!) So is Monday. I’m exhausted and cranky and he’s having a great time. What else is new?
Tuesday we see the big fancy surgical oncologist, the maven in this disease, and then we make the decision to get to that chemo or this, and see how that goes.
Meantime, how are you doing? Life is good. Feel free to e Tony or give him a call.
Love is all.
HOW DID IT HAPPEN?
“The past is always carried into the present by small things.
So a lily is bent by its permanence.”—Michael Ondaatje
More Tuesday probably when we see the surgical oncologist.
Meantime. it’s late. We’re snoozing. Hope you are too.
SUNDAY, JANUARY 20, 2008
Tony is anxious for Tuesday, when we will meet with Robert Cameron, the big shot at UCLA. He is mostly a surgeon but he knows a lot about this stuff.
Check out the website Pacific Heart and Lung Institute for some absolutely amazing photographs of these kind of tumors being removed and the long sheath of tissue that is the tumor itself. That is only if prurient interest in all this stuff is of interest to you. It’s pretty fascinating actually if you remove the fact that it’s you or your beloved who is being peeled like a grape from the inside.
Breathing is being appreciated a bit more as it’s getting difficult from time to time—oxygen tanks are dotting the landscape tonight. Not sure if it’s the cancer or the congestive heart failure from the Atrial fib, which has been pretty much unchecked for over a year. And we have no viable cardiologist who actually calls us back, so we are so grateful to the menschy oncologist who actually calls back within a few minutes and offers clear, wise and simple advice.
So, we love Lasix and pray for lots of liquid moving out of the body.
Not much to do except wait for the surgeon, start the chemo when we can, if we can and so it goes.
Up to this point he has felt well so this marks a bit of a change but he may be just fine again tomorrow. The details of the survival months start to become more apparent to us and we are striving for balance as we make decisions about what is best, when we seek what aid, what we balance and tough out, which part of the house we keep as a cancer free zone, if any, and easy stuff like that.
I gotta go.
Love
MONDAY, JANUARY 21, 2008
I’M NOT A DOCTOR BUT I’VE PLAYED ONE ON TV.
...and it came in handy last night as the Atrial fib/flutter/heart rate gallop sent T breathless to the ER (once again) with fluid on the lung—(right one again/the one that was talc-ed).Congestive heart failure—sounds very dramatic but we’ve been thru this scenario a few times already. We should take a suite.
Speaking to the fairly hip nurse, we found out that Liz Taylor does have her own suite here at Cedars. It has a lovely sitting room, hardwood floors and a very nice bathroom according to our sources. Also a sitting area with a fold-out couch which sure would have come in handy last night when we both stretched out on his bed, pretending to ignore the beeps and whistles and soundtrack of all night hospital life.
He pee-ed out two and 1/4 of those ample little thermos bottle things and he was admitted and now rests (yeah, right) captive in the north tower until they can get his heart rate under 100 again so he can breathe, and then move and then head to the cancer surgeon and then figure out what the next thing is. Ah life and its unravelings...
So, once the hip nurse went home about midnight, the second neurasthenic gal, all bleached blond and square eye-glassy comes in around 1:30 AM and says:
“Oooh, so I see you have Mesothelioma. I just love to learn about new things. Like, I Googled it, but it didn’t come up with anything except maybe from asbestos, so did you do asbestos? I mean how’d you get it, like what’s it like?”
I raise my slack jawed head from the bed where it was trying to sleep, eyes glazed ready to strike when the gracious Mr. T begins nicely explaining to her the ins and outs of his Voldemort foe. And I try to give her the high sign by saying:
“Well, maybe it doesn’t bear a great deal of conversation at the moment...
(beaming “cause it’s gonna kill him, asshole”) but she says,
“Oh yeah. Right. I guess it’s over, huh?” and then turns pertly and exits stage left.
Who is writing for ER these days, House, maybe? We want credit for that little interchange.
I guess she thought about it a little ‘cause she returned a few minutes later with some injectable drug, saying:
“Ooh, hope I didn’t offend you. I just think all these diseases are so cool and we don’t see a lot of that stuff. Mostly not working guys around here, y’know, but I hope you’re cool.”
And T, to his credit, said something like:
“Well, I may not be the best educational resource for you because the fucker is killing me at moment.”
She exits.
Words fail us.
“Well I guess I’ll read about this one on the blog,” he says.
And we collapse in laughter.
By the way, the view from his room over the hills at bout 5 AM—when the sun is just beginning to peak—is actually very beautiful. He’s sleeping and I’m going home to do the same.
xxoo
TUESDAY JANUARY 22, 2008
NO ANSWERS. LOTS OF QUESTIONS
Big day today. T home from Cedars at noon. Quick run down, heart rate in better control but who knows for how long?
Little confidence in cardiologist, good meeting with surgeon at UCLA, still digesting info and will get back with details. Surgery may be an option but we will not know until mid February. They have to reanalyze some slides to see how voracious the cancer cells are, then, we need to see if the left lung is inflammation and not cancer as there continues to be a question—oncologist says cancer; thoracic surgeons say it may be inflammation Pet/CT scan will give us more info—but can’t do ‘til Feb 2. Need to do more blood tests and some reexamination. No answers. Lots of questions.
If surgery is an option, and we won’t know ‘til mid Feb then—the surgery is to remove tumor around right lung and NOT the lung itself. Pleurectomy and Decortification—then recovery, then radiation, then interferon (not covered by insurance) and disease is then treated as a chronic disorder to be managed a la diabetes /high blood pressure—(with a tired Mr. Tony and living a bit pared down financially—but I might be able to up my teaching).
This is new medical idea—not previously offered. This guy doesn’t think chemo is an option—only works 40% of time on this cancer. Atrial fib is a big problem in the first week after surgery, and then of course we already have this problem but Cameron seems to think it is manageable…but we would have to talk to more cardiologists at UCLA.
So we are still digesting. The place was all razors and tongs, rock walls and fluorescent lights. Kept us waiting from 4:30-7:30, grueling, took a break to a surreal Indian restaurant with Indian MTV playing silently over my shoulder and the ghost of lunchers swallowing all the oxygen but then we got this possibility,
Surgery offers about 6 months of recovery and radiation and then perhaps chemo or not depending on what they see when they go in then an average of 18-36 months on average survival rate as opposed to a 9 month survival rate with or without chemo, this from UCLA maven surgeon.
We are digesting and gathering info.
Nothing is simple.
Nothing is decided.
Nothing is easy.
I must prepare for school and work tomorrow and please understand if I am not in touch immediately, There is a great deal to manage.
Much love to you all.
A DELIGHTFUL DIVERSION
GUESS WHAT? Even with T so sick and us so crazed, we get a little gift now and then….
…and maybe next year T and I will write THE YEAR OF LIVING CANCEROUSLY and go on the road together!
My god, how absurd is this life.
xxoo
WASHING DISHES AND DOING ORDINARY THINGS
Our friend, Vicki just said—about how surreal it all is-and then “we still have to wash dishes and do ordinary things”
And so we do. At 4:27 AM, the rains gushed from Noah’s arc onto our back garden, and the sprinklers went on at the very same time, and all I could think of was all that multiplying and drowning of things, and that was not productive.
The cat meowed, agreeing, and sent me back to sleep and then the heavens roared again and it was time to drive. So, to school and then the guy at the gas station scowled at me for needing a quart of oil in the rain. Right. I get that.
And then T took a shower and T told me about his bad dreams and I put the dishes away from the dishwasher, and then we talked about whether he was going to live or die with a major incision in his body or unscathed, and then I did the email and ate a bowl of cereal and then we went to the lawyer who I yelled at because she actually was trying to be nice and do her job and then we got in the car and I didn’t apologize and I came home and thought, well now that T won’t be around just who gets to decide when to unplug me at the last moment?
And then I folded the laundry and posted work for my students and ate three scones and a huge plate of chicken and a mound of last night Nava’s vegetables and then I talked to the other lawyer about just who and where and what and how much and how dare they and isn’t it too bad that...and then I brought the garbage cans from the street.
I did put some real wood over some real mud today though and that felt real good, like I was accomplishing something.
Spoke to the menschy doctor tonight and he wished me a good weekend and it made me smile because he really meant it and I appreciated that.
SUNDAY JANUARY 27, 2008
SO LET US GATHER OUR GREAT HEARTS AND MINDS
GENERIC DISCLAIMER: THE FOLLOWING IS RUMINATIVE IN NATURE. NO NEED TO BURDEN YOURSELF IF YOU JUST WANT AN UPDATE. THAT’S AT THE VERY END.
There are no mistakes.
“Life is right in any case” said Rainer Maria Rilke in Letters to A Young Poet.