A beautiful late winter snow day…tons of unexpected snow and I am in my flannel pajamas at 5pm. Delicious. Also delicious: today I made real Mexican hot chocolate concocted with a bar of real dark chocolate, cream and hot red peppers. And my new toy: a battery operated wisk. (Almost as much fun as other battery operated devices.)
But a soft drum beat in the distance: cancer, cancer, cancer. An old friend has breast cancer, a new friend has bone marrow cancer, a coworker’s child has brain cancer. In today’s paper a reminder that while we oooh and ahh over breast cancer and even colon cancer it will be lung cancer that will kill the most. Lung cancer kills seven times more than all other cancers put together.
Why no ribbons or races or fashion shows for Lung Cancer?
Because we think it is deserved by smokers and their families. A subtle shaming and discrimination. But get this: 80% of all lung cancer diagnoses are in folks who never smoked or who quit decades ago.
What color should the ribbons be?
Friday, February 25, 2011
Tuesday, February 15, 2011
Valentine's Day
Oh readers you know that I have struggled—with cancer, kids, jealousy, fears, projections, and a fabulous habit of scaring myself to death over and over. Today I am basking in –and saying this so that I remember—we have a good marriage. My own little mind would undo that fact at the drop of a hat—or an email or a bill or a poor night’s sleep. But yesterday—Valentine’s Day—I got it.
Nothing fancy, nothing shiny—just a quick after work date with John—visiting the pastry shop where we met for years as friends who liked to talk about books and music. Yesterday we talked about the craziness and the courage of the past five years—and the pain we caused others and each other as our friendship became romance became commitment. Memories of sweet moments? Yes. Regrets? Yes. The grief and the gifts that cancer has given us? Absolutely yes.
Nothing fancy, nothing shiny—just a quick after work date with John—visiting the pastry shop where we met for years as friends who liked to talk about books and music. Yesterday we talked about the craziness and the courage of the past five years—and the pain we caused others and each other as our friendship became romance became commitment. Memories of sweet moments? Yes. Regrets? Yes. The grief and the gifts that cancer has given us? Absolutely yes.
Tuesday, February 8, 2011
A Promotion
Feels like a promotion. Maybe a graduation—like going from kindergarten to first grade?
John’s “passed” his oncology tests yesterday and is now promoted to six month intervals. Which, yes good for him, but this is also means that I can now move out six whole months in my fear and worries.
Nutty thinking? Yes, I know it is, but if you’ve lived in Cancer Land you know how this crazy fear clock ticks.
John’s “passed” his oncology tests yesterday and is now promoted to six month intervals. Which, yes good for him, but this is also means that I can now move out six whole months in my fear and worries.
Nutty thinking? Yes, I know it is, but if you’ve lived in Cancer Land you know how this crazy fear clock ticks.
Sunday, February 6, 2011
Super Bowl Sunday
Today is Super Bowl Sunday. The table is black and gold. My clothes are black and gold. It’s bringing back so many good memories of growing up in Pittsburgh when the Steelers were always winning. It’s a funny thing about growing up in that era—all the sports teams were winners: Steelers, Pirates even the Penguins. I just thought that’s how it is when you live in a city—your teams win. Then I moved to other cities and realized how very spoiled I was by Pittsburgh.
Guests for dinner—pierogies, Chinese take-out, wings, Mexican, all football fan food. We’ll watch the game and the commercials and I will hope and hope for a Steeler win.
But in the background—a slight hum, a slight wafting of low grade fear. Tomorrow is oncologist again. Blood work and “Can you open your pants?” Our little joke that she wants to peek below his belt.
Flip a coin. Steelers kick off? Chemo again? Love—and football—in the time of cancer.
Guests for dinner—pierogies, Chinese take-out, wings, Mexican, all football fan food. We’ll watch the game and the commercials and I will hope and hope for a Steeler win.
But in the background—a slight hum, a slight wafting of low grade fear. Tomorrow is oncologist again. Blood work and “Can you open your pants?” Our little joke that she wants to peek below his belt.
Flip a coin. Steelers kick off? Chemo again? Love—and football—in the time of cancer.
Sunday, January 30, 2011
Shame and Caregiving
I’ve just read Brene Brown’s book, “I Thought It Was Just Me” about women and shame. She writes about bodies and money and parenting and work and weight and –surprise—caregiving. Though I’ve read --and now written-- a lot about caregiving I hadn’t seen this coming.
What Brown writes about is the delusion of caregiving. It’s the place where perfectionism and imposter syndrome collide. She writes about how we often compare the hard realities of day-to-day life as a caregiver with the idealized notions of being someone who is responsible, compassionate, dutiful and kind as a caregiver. Brown says, “Any image of stress-free, dutiful and rewarding caregiving is only available to those who have not yet fully engaged in this process.”
She goes on to write about the mistake we make when we talk about role reversal as part of the caregiver experience—and we often talk about role reversal, “parenting our parents”. We imagine that the child becomes the parent and vice versa. I thought that too. But no. As Brown points out there are crucial differences:
• We don’t have the same relationship with our partner or parent that we do with our children. When we bathe our child we don’t have to try to not cry.
• The energy we use to care for a child—even the exhausting care of a baby --is fueled by promise: it will get better and easier and rewards will follow. Not the case with a seriously ill partner or an aging parent. That will get harder and sadder and the experience is steeped in fear and grief not promise.
• Our culture and society has systems and mechanisms that support parents and children. Restaurants have children’s menus and booster seats and special areas for kids but they don’t have the logistics or practices to accommodate customers with Alzheimer’s or feeding tubes.
What caregiving and parenting do have in common though is that everyone’s a critic. There is endless critique and advice and suggestions that we could be doing either one better.
What Brown writes about is the delusion of caregiving. It’s the place where perfectionism and imposter syndrome collide. She writes about how we often compare the hard realities of day-to-day life as a caregiver with the idealized notions of being someone who is responsible, compassionate, dutiful and kind as a caregiver. Brown says, “Any image of stress-free, dutiful and rewarding caregiving is only available to those who have not yet fully engaged in this process.”
She goes on to write about the mistake we make when we talk about role reversal as part of the caregiver experience—and we often talk about role reversal, “parenting our parents”. We imagine that the child becomes the parent and vice versa. I thought that too. But no. As Brown points out there are crucial differences:
• We don’t have the same relationship with our partner or parent that we do with our children. When we bathe our child we don’t have to try to not cry.
• The energy we use to care for a child—even the exhausting care of a baby --is fueled by promise: it will get better and easier and rewards will follow. Not the case with a seriously ill partner or an aging parent. That will get harder and sadder and the experience is steeped in fear and grief not promise.
• Our culture and society has systems and mechanisms that support parents and children. Restaurants have children’s menus and booster seats and special areas for kids but they don’t have the logistics or practices to accommodate customers with Alzheimer’s or feeding tubes.
What caregiving and parenting do have in common though is that everyone’s a critic. There is endless critique and advice and suggestions that we could be doing either one better.
Thursday, January 27, 2011
The Swan
On Saturday I’ll read this poem at the memorial service for our friend Will. I did not know the poem before his wife asked me to read it. And now I am in love with this image of ungainly, ungraceful swan that lumbers and is awkward. That’s not what we picture when we think, “Swan.” But the one in the water, the one we see gliding, regal. And now Rilke says that is like us and I think, “Yeah, this is why I like poets—they can put words to this feeling and this fear of my own bumbling, rope tied, tripping over to-do lists life.
"This clumsy living that moves lumbering
as if in ropes through what is not done,
reminds us of the awkward way the swan walks.
And to die, which is the letting go
of the ground we stand on
and cling to every day,
is like the swan,
when he nervously lets himself down into the water,
which receives him gaily
and which flows joyfully under
and after him, wave after wave, while the swan,
unmoving and marvelously calm,
is pleased to be carried, each moment more fully grown,
more like a king, further and further on."
The Swan, by Rainer Maria Rilke, translated by Robert Bly
"This clumsy living that moves lumbering
as if in ropes through what is not done,
reminds us of the awkward way the swan walks.
And to die, which is the letting go
of the ground we stand on
and cling to every day,
is like the swan,
when he nervously lets himself down into the water,
which receives him gaily
and which flows joyfully under
and after him, wave after wave, while the swan,
unmoving and marvelously calm,
is pleased to be carried, each moment more fully grown,
more like a king, further and further on."
The Swan, by Rainer Maria Rilke, translated by Robert Bly
Sunday, January 23, 2011
Criticism
I got a great piece of advice last week from Diane Sawyer.
Last week I saw her interviewed on Oprah and she talked about her marriage to Mike Nichols. She said the best piece of advice she was given for marriage was: “Criticism is just a very poor way of making a request—so could you maybe just make the request?"
Brilliant. “You are selfish and lazy” is just a really poor way to ask: “Can you help me?”
Now lets see if I can do it!
Last week I saw her interviewed on Oprah and she talked about her marriage to Mike Nichols. She said the best piece of advice she was given for marriage was: “Criticism is just a very poor way of making a request—so could you maybe just make the request?"
Brilliant. “You are selfish and lazy” is just a really poor way to ask: “Can you help me?”
Now lets see if I can do it!
Tuesday, January 18, 2011
Collaboration and Creativity in Marriage
One of those times of intense inspiration. I’m reading the book, “The Cello Suites” by Eric Siblin—who tells a personal story of searching for the suites and their history—the political and musical history of Bach’s cello suites. I also dug out an old DVD of Yo-Yo Ma and Mark Morrison collaborating on the third suite and listening to them I was moved again by the critical factor of ego and no ego. (This is a beautiful film of Ma and Morrison working at one of my favorite and most sacred places: Jacob’s Pillow)
Clearly Yo-Yo Ma had to find an artist of his caliber with whom to create these collaborations. Watching him with Morrison I could see that it had to be between to artists who had the same amount of skill, expertise, gift and ego to make the collaboration work. If one had more or less then they would have buried the other or dominated the creative work.
Maybe this is also true in marriage? Each partner has to have confidence in themselves, a belief in their own creativity, health, passion, ability, intelligence and the ego strength to both hold their ground and cede the ground as needed. Collaboration may be a better word than partnership. Partnership suggests each puts something aside—dies down a little—in order to make the concern work—but collaboration requires strength and humility—the ability to suggest, insist and to step aside and be taught without loss of face or ego.
Clearly Yo-Yo Ma had to find an artist of his caliber with whom to create these collaborations. Watching him with Morrison I could see that it had to be between to artists who had the same amount of skill, expertise, gift and ego to make the collaboration work. If one had more or less then they would have buried the other or dominated the creative work.
Maybe this is also true in marriage? Each partner has to have confidence in themselves, a belief in their own creativity, health, passion, ability, intelligence and the ego strength to both hold their ground and cede the ground as needed. Collaboration may be a better word than partnership. Partnership suggests each puts something aside—dies down a little—in order to make the concern work—but collaboration requires strength and humility—the ability to suggest, insist and to step aside and be taught without loss of face or ego.
Monday, January 17, 2011
Long Weekend
This is when we feel like a couple. A long weekend and it is a mix of chores and fun and errands and decisions. We went to Saratoga Springs, watched lots of football, obsessed over home goods for kitchen and bath, set up a wireless network to use the lap tops, made chili and bread together, went to a wake, read for hours and made love.
Even in this loving, cozy time death was near us. We talked about health and illness and aging. Maybe being older helps and maybe cancer was gifting us too with this reminder of time and attention.
Even in this loving, cozy time death was near us. We talked about health and illness and aging. Maybe being older helps and maybe cancer was gifting us too with this reminder of time and attention.
Wednesday, January 12, 2011
Snow Day
Big snow today. John had a snow day and I had a work-at-home day. I was restless at first—always happens. I dream of a day at home and then the reality is that I don’t know how I want to use it—too many possibilities. I was starting to fuss and feel frustrated with myself –should I read, write, research, do errands? Try to get to a meeting? Try not to?
Then it hit me: there were so many days over the years when we’d wished for and fantasized about being together on a snow day. It wasn’t possible and it gave those past snow days a kind of sad tinge.
But here we were now-- together, alone, snowed in.
I shook my head, turned up the heat, took John to bed --and turned up the heat. No more frustration.
Then it hit me: there were so many days over the years when we’d wished for and fantasized about being together on a snow day. It wasn’t possible and it gave those past snow days a kind of sad tinge.
But here we were now-- together, alone, snowed in.
I shook my head, turned up the heat, took John to bed --and turned up the heat. No more frustration.
Monday, January 10, 2011
When Death Comes
When death comes
like the hungry bear in autumn;
when death comes and takes all the bright coins from his purse
to buy me, and snaps the purse shut;
when death comes
like the measles-pox;
when death comes
like an iceberg between the shoulder blades,
I want to step through the door full of curiosity, wondering:
what is it going to be like, that cottage of darkness?
And therefore I look upon everything
as a brotherhood and a sisterhood,
and I look upon time as no more than an idea,
and I consider eternity as another possibility,
and I think of each life as a flower, as common
as a field daisy, and as singular,
and each name a comfortable music in the mouth
tending as all music does, toward silence,
and each body a lion of courage, and something
precious to the earth.
When it's over, I want to say: all my life
I was a bride married to amazement.
I was the bridegroom, taking the world into my arms.
When it is over, I don't want to wonder
if I have made of my life something particular, and real.
I don't want to find myself sighing and frightened,
or full of argument.
I don't want to end up simply having visited this world.
---Mary Oliver
like the hungry bear in autumn;
when death comes and takes all the bright coins from his purse
to buy me, and snaps the purse shut;
when death comes
like the measles-pox;
when death comes
like an iceberg between the shoulder blades,
I want to step through the door full of curiosity, wondering:
what is it going to be like, that cottage of darkness?
And therefore I look upon everything
as a brotherhood and a sisterhood,
and I look upon time as no more than an idea,
and I consider eternity as another possibility,
and I think of each life as a flower, as common
as a field daisy, and as singular,
and each name a comfortable music in the mouth
tending as all music does, toward silence,
and each body a lion of courage, and something
precious to the earth.
When it's over, I want to say: all my life
I was a bride married to amazement.
I was the bridegroom, taking the world into my arms.
When it is over, I don't want to wonder
if I have made of my life something particular, and real.
I don't want to find myself sighing and frightened,
or full of argument.
I don't want to end up simply having visited this world.
---Mary Oliver
Tuesday, January 4, 2011
Christmas Vacation
People plan. God Laughs.
Our three day trip to in Florida turned into eight. John’s Mom has no TV or internet so we blithely arrived at the Palm Beach airport to fly home on December 27th and like many were turned away. After hours and hours of airport life and long lines and my almost visceral refusal to believe that even with the storm we could not leave for five days—I finally surrendered and accepted what it was.
I began a gratitude list in the airport:
1. I had 18 hour mascara
2. I love to read magazines and the airport was full of mags I’d never read.
3. My husband was not screaming at me—a man behind us kept screaming at his wife.
4. We were not blind—a couple near us were both blind. (And they were negotiating all this hassle and being decent.)
5. I was not traveling with an infant—several families had teeny new babies.
6. I remembered to pray. (It took some work to get my thoughts to behave but I did pray)
7. We were both ok—really ok. We had family nearby so eventually we gave up and went back to John’s Mom and ate extraordinary food for five days and
8. This unexpected and unplanned week gave me a chance to get to know my new mother-in-law in ways I never could as a holiday houseguest.
Because we had planned our Christmas time with each other for December 27th—we had our own celebration on January 1st.
My favorite gift to John was a hard to find recording of Jeremy Denk playing Ives.
My favorite gift from John was the “Clapper”—the gadget that turns lights on and off with a clap of hands. Really. Now we can turn lights on and off in bed. All kinds of possibilities there.
Our three day trip to in Florida turned into eight. John’s Mom has no TV or internet so we blithely arrived at the Palm Beach airport to fly home on December 27th and like many were turned away. After hours and hours of airport life and long lines and my almost visceral refusal to believe that even with the storm we could not leave for five days—I finally surrendered and accepted what it was.
I began a gratitude list in the airport:
1. I had 18 hour mascara
2. I love to read magazines and the airport was full of mags I’d never read.
3. My husband was not screaming at me—a man behind us kept screaming at his wife.
4. We were not blind—a couple near us were both blind. (And they were negotiating all this hassle and being decent.)
5. I was not traveling with an infant—several families had teeny new babies.
6. I remembered to pray. (It took some work to get my thoughts to behave but I did pray)
7. We were both ok—really ok. We had family nearby so eventually we gave up and went back to John’s Mom and ate extraordinary food for five days and
8. This unexpected and unplanned week gave me a chance to get to know my new mother-in-law in ways I never could as a holiday houseguest.
Because we had planned our Christmas time with each other for December 27th—we had our own celebration on January 1st.
My favorite gift to John was a hard to find recording of Jeremy Denk playing Ives.
My favorite gift from John was the “Clapper”—the gadget that turns lights on and off with a clap of hands. Really. Now we can turn lights on and off in bed. All kinds of possibilities there.
Saturday, December 18, 2010
It's Not About Me...but then maybe it is
Caregivers always apologize when they talk about their stress or their tiredness or their troubles. It’s almost a guarantee that if a caregiver dares to cop to feeling bad, mad or sad—or God forbid resentful—they will immediately say, “But I know this isn’t about me.” Or “But I’m not the one who is ill.”
But then again, maybe you are.
Here is more from Professor David Karp (“The Burden of Sympathy”): “All illnesses are potentially contagious in the sense that the stories of sick people become deeply woven into the biographies of those who feel commitment to them.”
But then again, maybe you are.
Here is more from Professor David Karp (“The Burden of Sympathy”): “All illnesses are potentially contagious in the sense that the stories of sick people become deeply woven into the biographies of those who feel commitment to them.”
Wednesday, December 15, 2010
The Burden of Sympathy
Another great book—this one is not new –it was published in 2000 and I stumbled across it looking for something completely unrelated. The book is called “The Burden of Sympathy” by David Karp. Karp is a sociologist who writes about caregiving and families of people with chronic mental illness. “The Burden of Sympathy” is his third book and this one is for all of us who are caregivers to people with chronic illness of any kind. And for many cancer is chronic—until it’s not.
Karp writes about the psychology and sociology of caregiving—but even though he is an academic, his writing is not. In minutes I was flipping chapter to chapter and underlining sentences—always a sure sign that this book has to become one of mine.
Here is the quote that opens Chapter One:
“As little as we know of illness, we know even less of care. As much as the ill person’s experience is denied, the caregiver’s experience is denied more completely.”
Karp writes about the psychology and sociology of caregiving—but even though he is an academic, his writing is not. In minutes I was flipping chapter to chapter and underlining sentences—always a sure sign that this book has to become one of mine.
Here is the quote that opens Chapter One:
“As little as we know of illness, we know even less of care. As much as the ill person’s experience is denied, the caregiver’s experience is denied more completely.”
Saturday, December 11, 2010
Looking for Signs
I laugh now at how many times in my life I have prayed for a sign to let me know if I was on the right path or for help in making a decision. In very difficult moments I have begged for skywriting from the universe and just last week I told a friend that I’m still waiting for an envelope from God with my name on it. Maybe I watched too many episodes of Mission Impossible as a kid, but part of me wants instructions that spell out clearly what I should do with my life.
I know God doesn’t work that way, but I also know I’m not alone in wanting him to. Some people flip coins or watch birds or follow the crude metals index. Others keep psychics in business and ensure that books on spiritual guidance top the bestseller lists. I’ve tried it all and I’ve been to Tarot readers, thrown the I Ching and I have a well-worn set of Rune stones.
Years ago when people close to me were dying and I was tearfully demanding to know God’s will, a friend who was more experienced in grief chastised and reassured me by saying, “Gods will is what is”. The simplicity and profundity of that statement silenced me for a while.
But I come back again to wanting to know, and often it’s at this time of year and there’s a good reason. As the winter begins and we are faced with dark and cold there is a pull from deep in our bones that drive us to seek light and answers. The need for light at this time of year is so great that we adapted culturally to give it to ourselves. We've had Hanukkah, now Solstice and soon Christmas, all great stories about finding light.
The part of the Christmas story that has always meant the most to me is that of the three wise men making their journey, traveling on a hunch, a belief, and their deep wanting. They had studied the sky for years and then they saw their sign.
In his poem, Journey of the Magi T.S. Eliot wrote: “At the end we preferred to travel all night, sleeping in snatches, with the voices singing in our ears, that this was all folly.”
Of course that is the problem with star following. You just don’t know. We see this most painfully now looking at the news. Stories of young men and women as heroes in Iraq and others, the same age who commit terrible crimes. All of them following their stars. But how do you know until you show up whether there’s going to be a baby or a bullet?
So the wise men’s lesson is all about faith: We do our best, we study, we consult with others, we try to be wise men and women, but we have to get on our camels, bring our gifts and hope we are doing good.
This is solstice week and these are our darkest days. We cope in the most ancient of ways. We go toward the light--to neon and the mall, to crowds of shoppers, even as our ancient relatives were drawn to stars and the fire.
Through all of this we’ll read our horoscopes. We’ll hope our loved ones will be spared the only thing that no one can be, which is death. We’ll look at the night sky and try to believe. No wonder a baby born in a barn is a great story. No wonder we look for signs.
I know God doesn’t work that way, but I also know I’m not alone in wanting him to. Some people flip coins or watch birds or follow the crude metals index. Others keep psychics in business and ensure that books on spiritual guidance top the bestseller lists. I’ve tried it all and I’ve been to Tarot readers, thrown the I Ching and I have a well-worn set of Rune stones.
Years ago when people close to me were dying and I was tearfully demanding to know God’s will, a friend who was more experienced in grief chastised and reassured me by saying, “Gods will is what is”. The simplicity and profundity of that statement silenced me for a while.
But I come back again to wanting to know, and often it’s at this time of year and there’s a good reason. As the winter begins and we are faced with dark and cold there is a pull from deep in our bones that drive us to seek light and answers. The need for light at this time of year is so great that we adapted culturally to give it to ourselves. We've had Hanukkah, now Solstice and soon Christmas, all great stories about finding light.
The part of the Christmas story that has always meant the most to me is that of the three wise men making their journey, traveling on a hunch, a belief, and their deep wanting. They had studied the sky for years and then they saw their sign.
In his poem, Journey of the Magi T.S. Eliot wrote: “At the end we preferred to travel all night, sleeping in snatches, with the voices singing in our ears, that this was all folly.”
Of course that is the problem with star following. You just don’t know. We see this most painfully now looking at the news. Stories of young men and women as heroes in Iraq and others, the same age who commit terrible crimes. All of them following their stars. But how do you know until you show up whether there’s going to be a baby or a bullet?
So the wise men’s lesson is all about faith: We do our best, we study, we consult with others, we try to be wise men and women, but we have to get on our camels, bring our gifts and hope we are doing good.
This is solstice week and these are our darkest days. We cope in the most ancient of ways. We go toward the light--to neon and the mall, to crowds of shoppers, even as our ancient relatives were drawn to stars and the fire.
Through all of this we’ll read our horoscopes. We’ll hope our loved ones will be spared the only thing that no one can be, which is death. We’ll look at the night sky and try to believe. No wonder a baby born in a barn is a great story. No wonder we look for signs.
Tuesday, December 7, 2010
The Glorious Debris
“Every one of us is called upon, probably a few times, to start a new life. A frightening diagnosis, a marriage, a move, loss of a job…
And onward full tilt we go, pitched and wrecked and absurdly resolute, driven in spite of everything to make good on a new shore. To be hopeful, to embrace one possibility after another—-that surely is the basic instinct…..Crying out: High tide!
Time to move out into the glorious debris. Time to take this life for what it is.”
--Barbara Kingsolver, from High Tide in Tucson
And onward full tilt we go, pitched and wrecked and absurdly resolute, driven in spite of everything to make good on a new shore. To be hopeful, to embrace one possibility after another—-that surely is the basic instinct…..Crying out: High tide!
Time to move out into the glorious debris. Time to take this life for what it is.”
--Barbara Kingsolver, from High Tide in Tucson
Thursday, November 25, 2010
Montaigne on Death
I’m reading Sarah Bakewell’s new biography of Montaigne. Wonderful format: she writes one question: How to live? And answers it in 20 essays giving glimpses into Montaigne’s life and writing and thinking.
A near death experience was a key to his life and thinking. He wrote:
“If you don’t know how to die don’t worry; Nature will tell you what to do on the spot, fully and adequately. She will do this job perfectly for you; don’t bother your head about it. Life is more difficult than death; instead of passive surrender, it takes attention and management. It can also be more painful.”
A near death experience was a key to his life and thinking. He wrote:
“If you don’t know how to die don’t worry; Nature will tell you what to do on the spot, fully and adequately. She will do this job perfectly for you; don’t bother your head about it. Life is more difficult than death; instead of passive surrender, it takes attention and management. It can also be more painful.”
Tuesday, November 23, 2010
Little Rebel Cancer Cell
A story today in New York Times about dentist’s use of radiation. Dentistry radiation is not regulated and the levels in the new machines are higher etc. It got me thinking again about that little cancer cell. It’s that one lone cell that goes off in the wrong direction—that changes—that starts the cancer. That one “trouble-making” cell.
But what if that cell, that little guy is—however misguided—trying to save our lives? I mean, look at what we do—the chemicals we eat all day long, the medications we take all of our lives, the radiation we pour into human bodies to check for cavities and broken bones and acne. All good stuff by themselves. And all the things in our environment that have changed in 50 years. Maybe none of it is dangerous by itself—I am not a “don’t drink out of plastic bottles” girl. But what might be the collective effect?
And that one cell—Brave? Misguided? Hopeful? Says, “No” and heads for the door. “I am gonna change”, she says. And yes the door turns out to be a wall or a cliff—but the little cell says, “Enough, I’m changing.”
Can you blame her, really?
The little cell tries something new—tries growing—tries changing—and it starts a reaction that becomes cancer.
Haven’t we all done this? Had enough of the pain, the problems, the same old same old and said—“That’s it I’m trying something, anything”. We tried to go blonde when we had olive skin, or tried to lose weight using diet pills. Or we tried plastic surgery or Botox. Enough said. We have all done bad relationships, bad jobs, joined groups that turned out to be cults or just enormous wastes of time. We say, “It’s just part of growth” when we do it or our favorite nephew does it.
But the little cell that tries to change—we declare a war on her.
But what if that cell, that little guy is—however misguided—trying to save our lives? I mean, look at what we do—the chemicals we eat all day long, the medications we take all of our lives, the radiation we pour into human bodies to check for cavities and broken bones and acne. All good stuff by themselves. And all the things in our environment that have changed in 50 years. Maybe none of it is dangerous by itself—I am not a “don’t drink out of plastic bottles” girl. But what might be the collective effect?
And that one cell—Brave? Misguided? Hopeful? Says, “No” and heads for the door. “I am gonna change”, she says. And yes the door turns out to be a wall or a cliff—but the little cell says, “Enough, I’m changing.”
Can you blame her, really?
The little cell tries something new—tries growing—tries changing—and it starts a reaction that becomes cancer.
Haven’t we all done this? Had enough of the pain, the problems, the same old same old and said—“That’s it I’m trying something, anything”. We tried to go blonde when we had olive skin, or tried to lose weight using diet pills. Or we tried plastic surgery or Botox. Enough said. We have all done bad relationships, bad jobs, joined groups that turned out to be cults or just enormous wastes of time. We say, “It’s just part of growth” when we do it or our favorite nephew does it.
But the little cell that tries to change—we declare a war on her.
Sunday, November 21, 2010
Our Friend Fear
I heard from a reader today (Thank you V.) who wrote about the fear. Yes, we can call it “the” fear. Fear for caregivers is so fluid and shape-shifting and paralyzing. Hardly anyone in Cancer Land talks about this. Of course we read and hear about the fears of the patient—fear of diagnosis, surgery, the fear before tests and maybe after. Awful yes –but nurses and case managers and doctors forget that other person often sitting in the room.
The fear that we caregivers live with is also disabling. What makes it even harder is the constant feeling that we can’t complain about it or express our suffering. In most cases we are not the one with cancer and that presumes that we are the one that can still go to work (not really) and still sleep (not really) and are not in physical pain (not really).
If only it was a fear that stays still like a fear of flying or a fear of snakes. But caregiver fear is a hydra with many heads and a demon that shifts its shape. It takes bad news ten different ways and then takes good news—“He’ll live” (but how?) or “They said yes to more chemo” (to what end result?) and that becomes six new ways to be scared.
Fear is our friend with a major personality disorder. Our dear Sybil—with us all the time and ever so vigilant as our constant companion.
The fear that we caregivers live with is also disabling. What makes it even harder is the constant feeling that we can’t complain about it or express our suffering. In most cases we are not the one with cancer and that presumes that we are the one that can still go to work (not really) and still sleep (not really) and are not in physical pain (not really).
If only it was a fear that stays still like a fear of flying or a fear of snakes. But caregiver fear is a hydra with many heads and a demon that shifts its shape. It takes bad news ten different ways and then takes good news—“He’ll live” (but how?) or “They said yes to more chemo” (to what end result?) and that becomes six new ways to be scared.
Fear is our friend with a major personality disorder. Our dear Sybil—with us all the time and ever so vigilant as our constant companion.
Wednesday, November 17, 2010
Like Keith Richards Inside Us
Today is the official publication date for “The Emperor of Maladies” by Mukherjee. It is being widely and wonderfully reviewed. In Sundays New York Times Book Review this quote:
“Cell growth is the secret of living, the source of our ability to build, adapt, repair ourselves; and cancer cells are rebels among our own cells that outrace the rest. If we seek immortality, Mukherjee writes, then so too, in a rather perverse sense, does the cancer cell.”
Is that cancer cell rebel –in its little black leather jacket and bad eyeliner --simply misunderstood?
“Cell growth is the secret of living, the source of our ability to build, adapt, repair ourselves; and cancer cells are rebels among our own cells that outrace the rest. If we seek immortality, Mukherjee writes, then so too, in a rather perverse sense, does the cancer cell.”
Is that cancer cell rebel –in its little black leather jacket and bad eyeliner --simply misunderstood?
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