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Archive for January, 2009

When we are told to “fight a battle” with a “positive attitude”

“Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. . . My point is that illness is not a metaphor, and the most truthful way of regarding illness — and the healthiest way of being ill — is one most purified of, most resistant to, metaphoric thinking.” – Susan Sontag

sontaggSusan Sontag wrote that two diseases have been “spectacularly, and similarly, encumbered by the trappings of metaphor: tuberculosis and cancer.”

In her book, Illness as Metaphor, written in in 1978, Sontag said that when the etiology of an illness is not understood, and the illness is intractable and capricious, it is mysterious, feared, dreaded, and all sorts of mythology and labels arise from it. As long as a disease is treated as an evil, invincible predator, people will be demoralized by learning they have it.  At the time Sontag wrote this book, cancer had become labeled and surrounded by mythology as tuberculosis had in the past.

At the time I read the book medical research had uncovered much of what was mysterious about cancer. We’re learning that cancer is not just one disease calling for one treatment. Better treatment has resulted in some cancer survivors living with it as a chronic, not simply fatal, disease. However, many of the old superstitions and myths remain, and are still impacting patients and the people around them.  

I wanted to unravel the mythology in part because the battleground metaphors around cancer were distressing and uncomfortable for me. Every time I read another obituary which said the person died after “a long battle with cancer,” I cringed not because it reminded me that I was diagnosed with a disease that could be fatal, but because I didn’t want the rest of my life defined as a military campaign.

Perhaps it’s unavoidable. I opted out of chemotherapy, so I decided not to “charge that hill,” and I haven’t experienced the worst side effects from some of the medicines that developed from chemical warfare agents.  I would think it’s entirely possible that when a person makes a decision to be poisoned in order to poison the cancer, that it literally is a decision to go to battle,  it probably takes that sort of a toll on the body, and maybe a person would want that struggle recognized. My aversion to the metaphor may be tied up in my own unwillingness to fight the battle that way. And, if I have a recurrence, my decision will be different, and at that time I’ll have some experience to back up what I’m talking about. I think that people who have gone through chemotherapy have a right to tell me I don’t know what I’m talking about.

But, I needed to read the book at the time that I did because I felt pressured on one hand to accept a metaphor of war along with a diagnosis, so I was being told both to “keep a positive attitude” and get in there and go to battle. I intuitively knew there was something wrong with that. Actually, neither of those things made sense to me.

I didn’t believe that my attitude caused my cancer and I didn’t think my attitude could cure it. And I don’t think a person who has cancer should be told they have to spend the rest of their life being a soldier.  As I say that, I realize that Patrick Swayze just said that going through chemo was like being in hell, so again, what do I know? 

Nevertheless.

Sontag herself had cancer and wrote this book after her cancer treatment. She wrote that “TB was understood, like insanity, to be a kind of one-sidedness: a failure of will or over-intensity. However much the disease was dreaded, TB always had pathos. Like the mental patient today, the tubercular was considered to be someone quintessentially vulnerable, and full of self-destructive whims.  Nineteenth- and early-twentieth-century physicians addressed themselves to coaxing their tubercular patients back to health. Their prescription was the same as the enlightened one for mental patients today: cheerful surroundings, isolation from stress and family, healthy diet, exercise, rest.”

On the other hand, the understanding of cancer supports quite different notions of treatment. “The treatment is worse than the disease.” The patient’s body is considered to be “under attack” so the only option (treatment) is “counterattack.”

Sontag says the controlling metaphors for cancer are drawn from the language of warfare. Cancer cells don’t multiply, they are “invasive.” Cancer cells “colonize” setting up tiny outposts in distant sites in the body. The body’s defenses must obliterate the tumor. We have radical surgical interventions.  Scans are taken of the body’s landscape. Radiation treatment “bombards” us with toxic rays. And, again, chemotherapy is chemical warfare. Treatment aims to kill cells, hopefully without killing the patient.

The “fight against cancer” is a colonial war.  Once, American Cancer Society proclaimed that progress has been made “reminiscent of Vietnam optimism prior to the deluge.”

Although my “mission” in reading the book was to find some peace among the military language of this disease, so I focus on that aspect of it, Sontag also addresses other metaphors and labels we have put on cancer, including the idea that it is “nature taking revenge on a wicked technocratic world.”

Although there are environmental causes and connections to cancer, it is as much a cliche to say that cancer is “environmentally” caused as it is to say that it is caused by mismanaged emotions.

Sontag’s book is helpful to deconstruct disease metaphors which she said had become “more virulent, preposterous, and demagogic.”

The book may be too philosophical for some. In fact, in the later chapters, Sontag analyzes the use of disease imagery in political and other rhetoric, using examples from Hobbes, Burke, Nietzsche, Trotsky, and others.  But it’s a useful book for those who believe we have enough to put up with having cancer without having to suffer from metaphor.

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Sontag died in New York City on December 28, 2004, aged 71, from complications of myelodysplastic syndrome which had evolved into acute myelogenous leukemia. The MDS likely resulted from chemotherapy and radiation treatment she received three decades earlier for advanced breast cancer and, later, a rare form of uterine cancer.

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Thursday, February 5, 2009 Feb. 5 Briefing to Unveil New Report on Health Care System’s Financial Squeeze on Cancer Patients

New Report and Video Documentary Look at Debt and Treatment Delays Faced by Cancer Patients with Private Health Insurance

The Kaiser Family Foundation and the American Cancer Society will hold a briefing Thursday, Feb. 5 at 9:30 a.m. in Washington, D.C. to release a new report highlighting the serious financial consequences families can experience when a family member is diagnosed with cancer – even when the patient has health insurance.

The jointly authored report, Spending to Survive: Cancer Patients Confront Holes in the Health Insurance System, analyzes the problems in the health care system that leave insured people with cancer and other life-threatening diseases unable to pay for the life-saving care they need. The report profiles 20 people from around the country who have been affected by cancer and suffered serious financial consequences as a result. It is based on an analysis of individual calls to the American Cancer Society’s Health Insurance Assistance Service, which helps families affected by cancer who encounter problems navigating the health care system.

In addition to the report release, the briefing will feature a Kaiser Family Foundation video documentary, The Cost of Cancer, that profiles three people in their struggles with cancer and the subsequent economic consequences.

After the presentation, a panel discussion will examine policy implications arising from the research.

WHAT: Briefing and panel discussion on a new report and companion video that illustrate holes in the health care system that can have devastating financial consequences for cancer patients.

WHEN: Thursday, February 5, 9:30 a.m. to 10:45 a.m. Eastern Time (registration at 9 a.m.)

WHO: Drew Altman, Chief Executive Officer, Kaiser Family Foundation John R. Seffrin, National Chief Executive Officer, American Cancer Society John R. Rowe, Professor, Department of Health Policy and Management at the Columbia University Mailman School of Public Health and former chairman and CEO of Aetna Inc. Karen Pollitz, Research Professor, Georgetown University Health Policy Institute Karyn Schwartz, Kaiser Family Foundation Kristi Martin, American Cancer Society WHERE: Barbara Jordan Conference Center (Kaiser Family Foundation Office) 1330 G Street, NW, Washington, DC (one block west of Metro Center)

RSVP: If you wish to attend, please RSVP to Tiffany Ford Fields or (202) 347-5270.

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finger1Someone asked me what those flowered things were in the photo with my post about my checkup. They’re the stickers with little BBs that the mammogram technician uses to mark the location of a lumpectomy, biopsy, etc. 

When I googled “mammogram stickers” to see if I could find the correct name for them, I came across stickers that are used to remind women of when it’s time to have a mammogram. Good grief, people! Whose hand is that – George Washington’s? 

Definitely NOT the hand of a woman who wants to remind herself to get a check-up.  Looks like a formindable father figure scolding a daughter.  Just what women need for a gentle reminder.

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I have updated a previous post about triple negative breast cancer.

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markersMy last appointment before I left town was at the women’s imaging center which is near the hotel where I stay. They knew I had a long drive home,  so they took me back right away and handed me a warm gown to put on. I  love warm gowns. I always take along a scarf to wrap up in because the gowns are skimpy and the rooms are sometimes cold. 

I was told that starting with this appointment, I would have a bi-lateral mammogram, to be followed with appointments every six months when I would have a mammogram on alternating sides.

I also had an ultrasound and a visit with the doctor, who said she was happy with the results of the tests and to see her in six months.

I wrote in the first draft of this post about how I had to insist that the technician get my records before she did the mammogram because I (mistakenly) remembered having a mammogram three months ago and didn’t think it was time to have another one, and how that seemed to set off what I guess would be called post traumatic stress, when I suddenly found myself reliving my first visit here when, during a biopsy I heard the doctor tell someone, “this is going to be cancer, make an appointment for an MRI right away.”

That draft wasn’t saved, and when I began re-writing it, I began wondering why I am writing this journal online where it is public.

How much of this does anyone care about? Who is my audience? What do they want to know? Occasionally, I read blogs written by other breast cancer patients. Everyone is different. One woman’s journal was, for quite a while, very precise and objective in describing what happens to a breast cancer patient without reflecting any emotional content. It was something I would like to have found when I first got my diagnosis so I would have an idea of the process that I would be going through:  how many doctors do you have, what is the role of each doctor, what kind of information do they give you and what is the process you used to make a decision about surgery and treatment, what is radiation treatment and what happens when you go for your first appointment? 

But, as the record of her experience went on, I began to wonder, how did you feel inside about this? Where was the emotional content to this? I wanted to know whether other women had gone through the overwhelming fear and anxiety that I had when I got my diagnosis, and what they did about it, and how long it lasted, and what were the reactions of the people who were close to them?

I wanted to know if other women cried during their first radiation treatment – and why. I wanted to know how many radiation treatments they had before they got tired, and how that fatigue felt to them, and what they did about it, and how the people around them helped or did not help. 

I wanted to know whether they decided to have chemotherapy and how they made that decision – did they just do what the doctor recommended, or did the doctor suggest they make the decision for themselves, and how does a person make a decision like that when we know we don’t have enough information to make a very informed decision that may be one of the most critical decisions we ever make. 

The blog that I was reading that didn’t reflect these things went on very objectively until one day this cancer patient had new pain accompanied by an unexpected and overwhelming fear — is this more cancer?   It is unsettling. It is hard to regain balance afterward. I could relate to her.

Reading about other women’s experience was the thing I hunted for and devoured during the first several months after my diagnosis and while I was going through surgery and treatment.

So, maybe I’ve processed the answer to my question: why am I writing this? If I was writing this just to process my experience for myself, I have plenty of blank books around the house, and this wouldn’t be public. 

I am writing this here in case there is another woman who wants to read about what happened to someone else so she can find something to hang on to for balance while she goes through her own experience. 

We are all unique and our experiences will all be different and we will process them differently, but knowing what it was like for other women helps me see the road.

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Wednesday, January 21.  I got two of my appointments over today. Both the surgeon and the oncologist said they didn’t see anything that concerned them. The oncologist’s office took blood and they will call me if something is not normal.  Up until now, they send a copy of the tests to my primary physician. This time they added something new – I fill out a self-addressed envelope and they mail me a copy of the test results.   

It was too soon to check into my hotel room, so I went to Pete’s Greek Cafe for one of his great Greek salads with feta cheese and pita bread and read The Denver Post. The front page of the post had the photo of President Obama, the First Lady, and the little girls taken on Inaguration Day.

I got to check into the hotel a little early.  I have a nice little stuido room with two south windows overlooking the bike path that runs for 15 miles along Cherry Creek.  It was 71 degrees outside – a beautiful day with no wind, and the path was busy with people power walking, riding bikes, and strolling along with their dogs.  I opened the windows and let in the fresh air and sunshine and the sound of the river.

Last winter when I didn’t feel well for a few weeks, I started watching episodes of Lost on my laptop.  I tried to pace myself, but it was so easy to get to the cliff-hanging end of an episode and then think: instant gratification! I could watch the next episode right away.  When I found out that the new season wouldn’t start until January, I put off watching the fourth season as long as I could stand it, then gave in and watched it over the next few weeks until I had seen all of them and joined the rest of the Lost fans who had to wait until January to see more.

Tonight is the night! An hour of the last season to be followed by two hours of the new season! Can’t wait. Hope I don’t fall asleep!

lost

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Coming back to the hotel from the hospital this afternoon I drove through an area along Speer Boulevard where homeless and other people stand on the corners with cardboard signs.  There was a nice looking young woman whose sign said “homeless, jobless.”  It said she needed $17.50 to get a copy of her birth certificate so she could get into British Columbia for a job. 

I passed a man in in a button down collar shirt holding a camera and gesturing to a man on the sidewalk. The man stood up to get a picture taken of his sign.  The words were very neatly lettered and spaced, and said, “Wife ran off with best friend.  Need money to send  c . . . . .  .” and when I read to that point, the light turned green and the traffic forced me to drive on before I could read the rest. 

 I’ll be pondering that all evening.  Oh. I know what it said. “Need money to send thank you card.”  Well, it wasn’t funny after all.  Now if it had said, “need money to send them the children,” then it would be funny.

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