Sunday, June 1, 2008

Stephi has been especially tired and blue this weekend.

Hi Everyone, This is Sibyl,

Sometimes I wonder if my "cheerleading"
is working for or against Stephi's state of
mind. There was a NYT article in today's
paper that hammered on me a bit. It is
so hard to read the signs. I attached the
article as a comment. The first one I tried
did not print the second page so go to the
second comment if you want to read the
entire article (Until I figure out how to take
down the incomplete duplicate. )
Linda has also observed the
"blues", as Stephi calls them. Sometimes
depression is every bit as concerning as
the cancer. We are trying to get more help in
this area as well.

My Daily Comforts for Caregivers book
by Pat Samples hit the nail on the
head today regarding the diverse reaction
of people to cancer. "The members of the family
have changed since we started taking care of
our loved one. Some refuse to deal with it,
some are jealous of the attention our loved
one gets, and some are down right mean.
It is difficult to not become bitter over it.
I wish we could come together as a family and
rally areound our loved one, but chances are
it won't happen-at least not with everyone.
Some family members do not have the ability
to cope with the situation, and they will never
do things I wish they would do. However, I
do not want to spend my time thinking about
that. It hurts and upsets me too much.
Instead, I accept the fact that they are how
they are. I may not like it, but I cannot
change it. Rather than letting it drag me down,
I am putting my bitterness into the hands of God
and focus my attention on what I can contribute
to the situation and on the benefits that are mine
because of it. Bitterness is a burden I refuse to carry.

This week's treatment will determine if the
chemotherapapy and bone marrow transplant will
be an option..the last attempt at BMT. After the harvest
in 8-9 days, we will have some decisions to make.
This is weighing heavily on us. This past week was
filled with dis-ease on so many levels.


So much so, that I took up my brother on his spa
offer. I went to Spa Tuscano in Northern KC and
had the Float R.E.S.T. treatment and a wonderful
Swedish massage. The Spa was elegant by any city's
standards and I will be back. It was wonderful. And,
it came a the right time. I was wishing someone
would give me a caregiver survival kit. I was
thrown into this without much preparation--I did it
for Mom and Dad--I "Get" Alzheimer's and Heart
disease---can spot those a mile out, there is
no denial of my knowledge of those--but, cancer, and
an orphan cancer, at that, is so foreign. Some days
I feel like I am drowning. I need a few essentials
to hang on to. I keep thinking: If I could design a
"survival kit" for caregivers, what would it contain?
A Healthy Eating routine and enough rest to ensure
survival for the long haul to be sure. Time to connect
with my Spiritual Power, a constant need. Contact
with several supportive friends every day. A journal
to record my thoughts especially for the book I am
writing about this experience. Exercise at Stephi's
Recreation center. Time with nature. Inspirational
readings. AA meetings. Dating once in a while. A
favorite TV Show (Bones and House).
Manhattan/Broadway fixes. I keep adding whatever
I decide is basic to my survival and keep it handy.
I am listing it here so my friends know about my "kit"
and will remind me to use it if I forget. I might post
the contents of the "kit" on the refrigerator to refresh
my memory every morning. My sanity, health
and survival depend on it.

Love,
Sib



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2 comments:

Sibyl Masquelier said...

When Thumbs Up Is No Comfort

By JAN HOFFMAN
Published: June 1, 2008
OVER the Memorial Day weekend, the actor Patrick Swayze, who is being treated for pancreatic cancer, made a pointedly public appearance at a Los Angeles Lakers game, looking strong-jawed and bright-eyed. He released a statement about his lively schedule and good response to therapy. Meanwhile, Senator Ted Kennedy, who had recently left Massachusetts General Hospital with a diagnosis of brain cancer, flashing crowds a thumbs up, competed in a sailing race. International headlines cheered, “Fight, Ted, Fight!
As public figures are stricken with harrowing illness, the images of them as upbeat — think of the former White House spokesman Tony Snow, Elizabeth Edwards, the actress Farrah Fawcett — accompanied by stirring martial language, have almost become routine.

“Whether you’re a celebrity or an ordinary person, it’s obligatory, no matter how badly you’re feeling about it, to display optimism publicly,” said Dr. Barron H. Lerner, the author of “When Illness Goes Public.”

That optimism reassures anxious relatives, the public and doctors, regardless of whether it accurately reflects the patient’s emotional state. “If Ted Kennedy wanted to stick up his middle finger,” Dr. Lerner added, “that would be the more appropriate finger, but he’s doing what he is supposed to.”

Whether such images inspire patients, or reinforce unrealistic expectations that they, too, should maintain a game face, remains an open question, say doctors, social workers, family members and patients themselves.

Adam Lichtenstein, a founder of Voices Against Brain Cancer, a fund-raising and support organization, sees no down side to Mr. Kennedy’s composure. “It gives everyone else with his diagnosis a glimmer of hope,” said Mr. Lichtenstein, whose ebullient brother, Gary, was 24 when he died from a glioblastoma. “Patients think, ‘He’s fighting it, why can’t I?’ ”

But Rachel M. Schneider, a clinical social worker at Memorial Sloan-Kettering Cancer Center, said that while many patients are inspired by celebrities, others feel guilty for not being as upbeat as the celebrities appear, and angry that the gravity of the disease may be misrepresented. By being constantly reminded that they should keep their chin up, patients implicitly believe that emotional wobbliness will adversely affect their outcome.

“Hopefulness is real,” Ms. Schneider said. “But patients say, ‘I have to be positive, I can’t cry, I can’t let myself fall apart.’ And that is a burden.”

Certainly maintaining a game face is how many patients cap the eruption of terror and anxiety, in an effort to protect their loved ones and themselves. But not everyone is going to be brave, said Dr. Joseph J. Fins, chief of medical ethics at Weill Medical College of Cornell University. “We only hear about those who handle it well,” he said. “As a society we value the stoic but we don’t know what the stoicism hides.”

Although public figures promote enduring impressions of the stalwart, pumped-up spirit, he added, patients themselves often describe a more nuanced, evolving journey. When Robert Kosinski was told he had a tumor on top of his brain stem, entwined with his optic nerve, “Everything went dark, went blank,” he recalled. “I was overwhelmed by the idea that I had a brain tumor stuck inside me. The train ride home lasted so long and I just kept wondering, ‘How long do I have to live?’ ”

Faced with potentially harrowing repercussions from a biopsy, Mr. Kosinski, a husband and father in Jersey City, said he felt depressed and ultimately alone with his decisions.

He chose not to have the biopsy, and went through chemotherapy. He would endure a dozen blood transfusions. Optimism, or even stoicism, were not part of his emotional makeup during those grueling months. “I never felt brave or courageous,” Mr. Kosinski said. “I don’t know what that means. I was scared. I was the furthest you could be from courageous.”

That was 15 years ago. Mr. Kosinski, now 61, paints and attends a monthly support group, where he ascribes his odds-defying survival to luck and medical expertise, rather than personal will. “Some people in my group don’t want to hear the upbeat scenario,” he said. “The way they’re coping is completely the opposite because they feel they may not make it.”

It’s important for patients to realize that “there’s no scripted way to handle this,” Dr. Fins said. “They can write their own script based on their own narrative.

“If we fail to meet patients where their grief has taken them, we have sequestered them off,” he added. “Then patients and families talk about platitudes rather than what they’re really thinking.”

In the last 15 years, as patients have become more outspoken, a mushrooming amount of cancer narratives has legitimized a soulful range of responses to illness. The Internet teems with patients’ voices: communities gather to weep and wisecrack on sites like the uppity ChemoChicks or MyCancer, a National Public Radio blog by Leroy Sievers, a former television news producer .

Dr. Gary M. Reisfield, a palliative care specialist at the University of Florida, Jacksonville, believes that the language used by cancer patients and their supporters can galvanize or constrain them. Over the last 40 years, war has become the most common metaphor, with patients girding themselves against the enemy, doctors as generals, medicines as weapons. When the news broke about Senator Kennedy, he was ubiquitously described as a fighter. While the metaphor may be apt for some, said Dr. Reisfield, who has written about cancer metaphors, it may be a poor choice for others.

June 1, 2008 at 11:17 AM
Sibyl Masquelier said...

When Thumbs Up Is No Comfort
By JAN HOFFMAN
OVER the Memorial Day weekend, the actor Patrick Swayze, who is being treated for pancreatic cancer, made a pointedly public appearance at a Los Angeles Lakers game, looking strong-jawed and bright-eyed. He released a statement about his lively schedule and good response to therapy. Meanwhile, Senator Ted Kennedy, who had recently left Massachusetts General Hospital with a diagnosis of brain cancer, flashing crowds a thumbs up, competed in a sailing race. International headlines cheered, “Fight, Ted, Fight!”

As public figures are stricken with harrowing illness, the images of them as upbeat — think of the former White House spokesman Tony Snow, Elizabeth Edwards, the actress Farrah Fawcett — accompanied by stirring martial language, have almost become routine.

“Whether you’re a celebrity or an ordinary person, it’s obligatory, no matter how badly you’re feeling about it, to display optimism publicly,” said Dr. Barron H. Lerner, the author of “When Illness Goes Public.”

That optimism reassures anxious relatives, the public and doctors, regardless of whether it accurately reflects the patient’s emotional state. “If Ted Kennedy wanted to stick up his middle finger,” Dr. Lerner added, “that would be the more appropriate finger, but he’s doing what he is supposed to.”

Whether such images inspire patients, or reinforce unrealistic expectations that they, too, should maintain a game face, remains an open question, say doctors, social workers, family members and patients themselves.

Adam Lichtenstein, a founder of Voices Against Brain Cancer, a fund-raising and support organization, sees no down side to Mr. Kennedy’s composure. “It gives everyone else with his diagnosis a glimmer of hope,” said Mr. Lichtenstein, whose ebullient brother, Gary, was 24 when he died from a glioblastoma. “Patients think, ‘He’s fighting it, why can’t I?’ ”

But Rachel M. Schneider, a clinical social worker at Memorial Sloan-Kettering Cancer Center, said that while many patients are inspired by celebrities, others feel guilty for not being as upbeat as the celebrities appear, and angry that the gravity of the disease may be misrepresented. By being constantly reminded that they should keep their chin up, patients implicitly believe that emotional wobbliness will adversely affect their outcome.

“Hopefulness is real,” Ms. Schneider said. “But patients say, ‘I have to be positive, I can’t cry, I can’t let myself fall apart.’ And that is a burden.”

Certainly maintaining a game face is how many patients cap the eruption of terror and anxiety, in an effort to protect their loved ones and themselves. But not everyone is going to be brave, said Dr. Joseph J. Fins, chief of medical ethics at Weill Medical College of Cornell University. “We only hear about those who handle it well,” he said. “As a society we value the stoic but we don’t know what the stoicism hides.”

Although public figures promote enduring impressions of the stalwart, pumped-up spirit, he added, patients themselves often describe a more nuanced, evolving journey. When Robert Kosinski was told he had a tumor on top of his brain stem, entwined with his optic nerve, “Everything went dark, went blank,” he recalled. “I was overwhelmed by the idea that I had a brain tumor stuck inside me. The train ride home lasted so long and I just kept wondering, ‘How long do I have to live?’ ”

Faced with potentially harrowing repercussions from a biopsy, Mr. Kosinski, a husband and father in Jersey City, said he felt depressed and ultimately alone with his decisions.

He chose not to have the biopsy, and went through chemotherapy. He would endure a dozen blood transfusions. Optimism, or even stoicism, were not part of his emotional makeup during those grueling months. “I never felt brave or courageous,” Mr. Kosinski said. “I don’t know what that means. I was scared. I was the furthest you could be from courageous.”

That was 15 years ago. Mr. Kosinski, now 61, paints and attends a monthly support group, where he ascribes his odds-defying survival to luck and medical expertise, rather than personal will. “Some people in my group don’t want to hear the upbeat scenario,” he said. “The way they’re coping is completely the opposite because they feel they may not make it.”

It’s important for patients to realize that “there’s no scripted way to handle this,” Dr. Fins said. “They can write their own script based on their own narrative.

“If we fail to meet patients where their grief has taken them, we have sequestered them off,” he added. “Then patients and families talk about platitudes rather than what they’re really thinking.”

In the last 15 years, as patients have become more outspoken, a mushrooming amount of cancer narratives has legitimized a soulful range of responses to illness. The Internet teems with patients’ voices: communities gather to weep and wisecrack on sites like the uppity ChemoChicks or MyCancer, a National Public Radio blog by Leroy Sievers, a former television news producer .

Dr. Gary M. Reisfield, a palliative care specialist at the University of Florida, Jacksonville, believes that the language used by cancer patients and their supporters can galvanize or constrain them. Over the last 40 years, war has become the most common metaphor, with patients girding themselves against the enemy, doctors as generals, medicines as weapons. When the news broke about Senator Kennedy, he was ubiquitously described as a fighter. While the metaphor may be apt for some, said Dr. Reisfield, who has written about cancer metaphors, it may be a poor choice for others.

“Metaphors don’t just describe reality, they create reality,” he said. “You think you have to fight this war, and people expect you to fight.” But many patients must balance arduous, often ineffective therapy with quality-of-life issues. The war metaphor, he said, places them in retreat, or as losing a battle, when, in fact, they may have made peace with their decisions.

To describe a patient’s process through illness, he prefers the more richly ambiguous metaphor of a journey: its byways, crossroads, U-turns; its changing destinations; its absence of win, lose or fail.

Richard Haimowitz, 62, a lawyer in Queens who was found to have pancreatic cancer in January 2007, thought of himself as a warrior, fighting with all available ammunition.

“The day of my last treatment, people congratulated me, but I felt blindsided by my reaction,” Mr. Haimowitz said. “I thought, ‘Oh my God, I have nothing left to fight with,’ and I felt angry that there was nothing left for me to do.” Statistics to the contrary, Mr. Haimowitz has had two clean scans, is back at work and takes spinning classes. As he soldiered through treatment, Mr. Haimowitz recalled, he did not fear death, even though he did not want to die. Many studies published in oncology and mental health journals have looked at whether attitude is a factor in survival or recurrence rates, a core belief in many cultures and faiths. Some studies say yes, others no. They all have their critics.

“The thumbs-up attitude is very important,” said Darren Latimer, 33, a banker in Chicago who had surgery for a malignant brain tumor in May 2005, and still receives chemotherapy. “You can be in the dumps very quickly in our business, the business of being sick. But can you fight your disease and not yourself?”

Certainly patients need psychic resolve to make difficult decisions, prepare for stark regimens and to push back against bleak prognoses. The evolutionary biologist at Harvard, Stephen Jay Gould, whose doctors told him that eight months was the median survival rate of patients with his diagnosis, abdominal mesothelioma, wrote: “Attitude clearly matters in fighting cancer.” In his 1985 essay, “The Median Isn’t the Message,” he described how he then closely studied those grim statistics to optimize his chances. He died from another form of cancer 20 years after the initial diagnosis.

Uneasy well-wishers, steeped in near-superstitious belief about positive mental attitude, can exacerbate anxiety. On Cancerblog.com and ChemoChick’s “Excuse Me?” sites, lists of tone-deaf remarks include, “If anyone can beat it, it’s you,” “You gotta think positively” and “Just look at Lance,” a reference to Lance Armstrong, the champion cyclist and a cancer survivor.

Brian Wickman, a manager at a luxury hotel in Manhattan, needed to reframe his loved ones’ language. Two years ago, an oncologist told him there was little published data about the aggressive tumor on Mr. Wickman’s ankle because it was so rare and because, “no one wants to publish when all the subjects die.” A month later, Mr. Wickman, then 30, a skier and a rock climber, had his left leg amputated. He was also found to have thyroid cancer. He reacted severely to chemotherapy, and spent two months in intensive care.

His awestruck friends would say, “ ‘You’re so brave, I don’t know how you do it, you’re my inspiration.’ They would put me on a pedestal,” Mr. Wickman said. “That doesn’t allow me to be human and in pain, angry or depressed.”

HIS e-mail messages reveal a spirit of great equanimity and eloquence: Mr. Wickman, who now wears a prosthesis and has resumed athletic activities, will attend graduate school in the fall for a joint degree in social work and divinity.

But in his darker moments, he refused to construct a front. He would write bluntly about feeling grumpy, frustrated and afraid nobody would date him. “This is not a call for pity responses,” he would add. “Just let me be where I am.”



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June 1, 2008 at 11:20 AM

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