Cancer Bitch

Chocolat

2012-01-24T01:31:00.002-06:00

I have been abstemious in my eating: no sugar, no flours since September or so. Today I had chocolate (73 percent dark, as people in my social class are wont to require) from the city of Paree at Miz G's house. I'd gone there to report on my melancholia. What helped said melancholia was: chocolate. And deciding that I will go back to my friend S's apartment in Lafayette, IN, to keep working on my novel. At home I told L and he said, You have commitments. Of course I have commitments. But I will work around them. I got so much done in Lafayette in December. Plus took in a number of Zumba classes at the Y. It is so much easier to work there, away from everything, where it's just me and the ms. Indianer here I come. Soon.
My home away from home:

A quarter of a year later...

2012-01-22T22:54:00.008-06:00

The Bitch returns. The Bitch is still aflutter: What does this blog serve? What does it do for her own imperiled psyche? What should the subject of it be? If it is not about breast cancer all the time, will it be considered AWOL from its mission? And most of all:
Does it matter?

The fears: If I do not document my life, my memory of it will disappear so that it will seem to have disappeared. If people want to read about my life, they will. If not, they'll click off. So be it. I do believe in selfishness (even Ayn-Rand brand of selfishness) when it comes to writing. You write for yourself. You revise with others in mind.

Tonight I felt sadness. A lump in my throat I tried to eradicate the direct way, with Ativan generic. Worked some but also made me feel sleepy. Or was that the Atarax generic I took with it? Indeed, better living through chemistry. Sadness. Deep sadness. Deepening sadness. I try to do a check: Rage? I ask myself and see if I get a response. Fear? No, it does seem to settle on sadness. My dream last night, so very sad. Something with Jews on a boat coming back, a trial going on, I was sitting next to Sidney Brustein (as in The Sign in Sidney Brustein's Window), who was a 60-ish buttoned-up lawyer. At one point someone drew blew pencil lines connecting all of us (a picture of us? maybe) and there was a blue line on him, so I said, you've been caught but he denied it. Later he went out of the ship and was watching frogs with his grandson. Then he jumped in the pool/ocean behind the kid and the frogs. I was about to jump in behind him, but then we had to all get onboard. We couldn't wait for the Brusteins. It was assumed that they would be killed by being run over by the boat.
Why did I dream of a character from a play I've never seen? From tooling around online, I find that this was written by Lorraine Hansberry and produced as she was dying. Sidney is unlikeable. He's the Jew in a play with blacks and Jews. What is his sign? I don't know. There's a wife who lowers herself to do--commercials, of all things. There's an in-law who's a prostitute. There's a candidate who isn't worthy. There's Sidney and his allegiances and schemes. In my dream he was Bourgeois with a capital B, very very conservative. Finally he lets out his playful side and...is crushed.

Alas, too tedious to examine all the influences on this. The big public one is the Italian cruise ship and the captain who was dedicated to saving his own skin.
As my mother always said, If you do the right thing, you never have to worry.
She didn't add: In dangerous situations you may die an uncomfortable death. The stakes weren't so high when I was young.

But we digress.

The sadness is what we came here to dissect. The sadness while walking up Lincoln Avenue, thinking of The Guild Bookstore that closed down maybe 30 years ago, the years in my 20s and 30s when we were forming the National Writers Union and there seemed to be so much promise, both public promise and private promise. The younger you are the more promise you have. Usually. Government, social change seem to have gotten heavier, requiring more effort to push and shift. Or maybe it's the lump in my throat that's spread to my chest. It was easier to get swept up in movements. Those were utopian times, for me. The most recent Atlantic: profile of Mearsheimer at U of Chicago, promoter of Realpolitik by by another name. I don't want to live with Realpolitik. I liked the days when there were masses of angry and frustrated young people and clergy who knew what had to change. We knew what had to be done. Mostly it was that the US had to get the hell out of [fill in the Latin American country of your choice here]. Now a deeper malaise that's stronger, more insidious than just some covert bombing in service to imperialism. A feeling of scorched earth. In the Trib today the same list of big regional polluters as you would predict. Refineries. Coal. What was that clean coal that Obama used to talk about? We were skeptical then about it then. The pall cast over everything. A college student reporter asked me weeks ago what the worse problem was in the neighborhood. I couldn't rank them. Poverty I thought, which is behind much of crime. I said crime. What I fear most is crime to my person. Already much unknown crime committed in my name, the name of Western consumers: oppression in Chinese factories. As if I woke up and found that everything was made in China. It used to be that a lot was. When did the ubiquity start?
A Linked-In invitation from R, who was lovers for many years with K. They lived in one of those old, comfortable and beautiful houses in the Berkeley Hills. I admired both of them. I accidentally rubbed K the wrong way by asking her to write a letter of rec for me posthaste. It was stupid to ask, to press her to do that favor for me. But that stopped her email responses. She didn't ask me to join on Linked-In. Or maybe they divided people up and R got me. I knew her first, though not well, in Paris, mid 1970s.
Going through boxes of cards today to find posters and such to put in my office at the Smart University. A card from M traveling in Europe. Which M? The poet R talking about a short story. When did I send it to her and when did I meet with her? I have no recollection. A card with letter inside from H reporting giddily about the roaring response to his lecture on photographic history. Then he published his book, he divorced, he married a former student, had a child, then died suddenly while walking into Wrigley Field.
This Shiva Nataraja has many arms but has such good balance that he doesn't look stressed out.

Cell phones get the OK

2011-10-21T02:02:00.007-05:00

Now you can call all your friends and tell them the news: The link between cell phones and cancer is not strong. Not at all. The New York Cancer Times reports about the findings of a study in the Brit medical journal BMJ. Researchers studied almost 360,000 Danish cell phone users and according to the Times, found no increased risk of brain tumors with long-term use.

There's a caveat: The researchers said they did not record the actual amount of time that callers used their phones. There still might be a small increased risk of cancer in people who use cell phones often, and for 10 or 15 years. (Well, won't we all have used them for 15 years pretty soon?)

So don't throw away your tin cans and string yet. And keep studying that Morse Code!

Radiation is Good, says the Lancet

2011-10-20T00:54:00.004-05:00

The New York Times just reported on an important British study showing that radiation prevented recurrences and saved lives of women who had lumpectomies.

Specifically, researchers at the University of Oxford found radiation reduced the risk of a recurrence during the first 10 years after surgery to 19.3 percent from 35 percent, and reduced the risk of death from breast cancer from 21.4 percent to 25.2 percent in the first 15 years. Radiation provided results better than chemo or hormonal therapy alone.

The Oxford doctors analyzed 17 studies of almost 11,000 women in the U.S., Canada and Europe. Women with estrogen-positive tumors who took tamoxifen (to keep their bodies from absorbing natural estrogen) and had radiation had a smaller chance of recurrence than those whose tumors did not feed on estrogen.

And where there's a plus, there's a minus. Thomas A. Bucholz reports in The Lancet: if radiation is not used, this persistent locoregional disease can metastasise and increase the chance of dying from breast cancer.

So use it or lose it.

While I was Out...

2011-10-17T23:59:00.017-05:00

The New York Times had a good mid-October report on the pinking of America. Basically, it was about the rise of the upbeat Komen for the Cure... and its critics. Cancer Bitch has been a critic of Komen for being so large and media-glitzy but since 2008 it's been putting its funds into prevention and cure. Imagine that! Some good quotes:
The pink ribbons have become a distraction.--Karuna Jaggar, executive director, Breast Cancer Action
On Komen ads: It changes the focus of what we should be looking at to some advertising, marketing slogan. --Dr. Otis W. Brawley, chief medical officer of the American Cancer Society.
-We could prevent countless deaths if everyone got the same level of care as upper-class white women in Boston or New York.” --Dr. Eric P. Winer, director of the breast cancer program at the Dana-Farber Cancer Institute in Boston and chief scientific adviser for Komen.

And in today's (Tuesday's) Times*, there's a first-person piece by a doctor-professor who had the same stage cancer I did, 2A. Every year, she says, she checks a certain new edition of a medical textbook and consults its survival tables. There it is: Table 17-6. Average Survival of Patients With Breast Cancer by Stage.

It hasn’t changed a bit. Patients with breast cancer like mine, Stage IIA, still have a five-year survival rate of 70 percent (not great, but O.K.) and a 10-year rate of 50 percent (not good at all).

Her own doctor told her that her chances are much better than that, that the stats include those with "nasty" cancers. And I'm wondering why Feld had a lumpectomy and radiation and I had mastectomy and chemo. (Everyone's cancer is different. Of course. But I think the diff is that I had two tumors and there was no way to cut them out with clear margins and save the breast.)

We want to know. We want to know how much time we have. Which reminds me of one of the stories in Miriam Engelberg's memoir in comics, Cancer Made Me a Shallower Person. One of the things people say to someone with cancer, she wrote, is: After all, any of us could get hit by a bus tomorrow! She was, she recounts, actually hit by a bus once. Before she had cancer. She was OK. Without a scratch. I'm glad, of course, that I didn't die 15 years ago, thought it would have saved a lot of emotional anguish and nausea.
So she survived being hit by a bus. Then got breast cancer and died.

__________
*Cancer is like catnip for the Times. Or, to put it this way: Cancer is to the Times as World War II is to the New York Review of Books.

Return of the Bitch

2011-10-14T01:20:00.008-05:00

It has been more than a month since I've blogged and I thought it was due to laziness but it may have been lack of urgency, since this is partly an illness blog. But luckily!! a bacterium invaded and now I can write about it! Alas, breast and blood cancer are much cleaner illnesses than bacterial infection of the stomach. Luckily, this infection should be gone a week after it started, though it was not without its high points. They included a six-hour stay in the ER at Plain'n'Pious Hospital, where my doctor is affiliated, featuring a pulse rate of 125, one IV and several immodium, or I suppose the plural would be immodia.
As she was very nicely driving me to PPH, G gave me heart-attack advice, which seems worth repeating: If you think you're having a heart attack, take aspirin and call and ambulance, because the ambulance-driven customers get more respect.
I saw my doctor today and she almost sent me in for another IV, but I told her I wasn't willing to spend hours in the ER again. She said she would call ahead and order it, but I doubted I would get quick service. She sent me downstairs to get the collection container for a sample (because PPH's sample showed nothing, and she dismissed it as a crude test anyway; if I trusted in PPH I would say that it probably checks for dire illnesses with large molecules). I walked in and the clerk said to sign the board. Did we need to have our names so publicly and largely displayed? I looked around. There was no board, black or white. She pointed. Oh, there was a list on a clipboard. But really, have you ever heard such a list called "a board"? I know, we call a table a table even when there's a cloth over it. Anyway, she asked if I wanted a hat. She had in hand a large plastic object that would make a perfect hat if you were standing on your head while balancing on the sides of the toilet seat. Also it can be used to catch your waste before putting it in the sample cup. She told me, It's disposable.
That's a relief.
***
Later I took a bus about two blocks to the Landmark and saw The Hedgehog, or Le Herrison, which has many and even mostly wonderful parts but isn't a great movie. As I discussed it with myself afterwards, I thought the rich Japanese man of the film was too democratic in his friendships and everyone knows the Japanese are xenophobic. Then I responded to myself saying, That's a stereotype, and must every depiction of someone reflect the stereotypical view of people from that country/religion/profession? And I responded to that by affirming, What a good point, and the movie is also showing that only the marginal--foreigners and children--can see beyond rigid lines of class. So, Hegelianly, I concluded I was right.

Announces or reveals?

2011-09-07T23:20:00.005-05:00

Newsperson Andrea Mitchell has reported that she has breast cancer. You've probably already heard that. Odd that NBC http://www.nbcchicago.com/entertainment/television/Veteran-Reporter-Andrea-Mitchell-Reveals-She-Has-Breast-Cancer-129396688.html
uses the term reveals. Is it because it's cancer? Because is a sexy-type part of the body? Earliest stage. Terrific prognosis. She's aware of how lucky she is she found it early. She also says, This disease can be completely curable if you find it at the right time. I suppose it can be. But it isn't always.
It sounds like she dealt with the cancer within the last week, so it seems like it was small surgery, likely a lumpectomy. So she could have easily gotten away with not even mentioning it. It's to her credit that she does.
She urges women to get scanned. I can't fault her for not going on to talk about disparities in health care or potential environmental causes of breast cancer. She's the chief foreign affairs correspondent, a news person, and so can't go on the bandwagon. Though she does mention her long support of Susan G. Komen for the Cure.
She also noted that one in eight women in the U.S. are diagnosed with the disease. Which will be news to some people.
****
I have been remiss. A few weeks ago, the Feinberg School of Medicine at Northwestern released its study A Profile of Health and Health Resources within Chicago’s 77 Communities. One of its five foci was racial/ethnic disparities in breast cancer mortality. It found that poor women and women without insurance are less likely to get mammograms, and also that these women were less likely to be told to get a mammogram. (Well, we all knew this, but here's the evidence.) It uses information from the Sinai Urban Institute, so that part of the report is old news. I also found out that Komen has funded the Chicago Breast Cancer Quality Consortium, which aims to identify deficiencies in quality and make improvements. I think that's good, and try as I might, I can't think of anything wrong with that. Which is a disappointment to me. See the report at http://chicagohealth77.org/uploads/Chicago-Health-Resources-Report-2011-0811.pdf
It's odd that the illustration of the section on breast cancer disparities is a photograph of five attractive young women in pink shirts with ribbons pinned on them and jeans. Their hands are held out, one on top of the other. They are, in order: black, white, brown, white, white. They look pretty happy despite the disparities. I suppose you could use a picture of a down-and-out woman in chemo as an illustration. Or a funeral. The photo that goes with the childhood obesity section is of mostly-white kids and adults--thin, all of them--walking in the Crown Fountain in Millennium Park. The question is, to raggedly paraphrase Bobby Kennedy: Do you show the problem as it is or do you show what the problem would look like fixed?
This is actually a serious question, because deep down, it's about motivating people to change, either themselves or the community. What inspires? (The answer is not the hang in there kitty cat pictured above.)

When the brand means the brand

2011-08-31T23:06:00.010-05:00

Let's consider brands, not as in corporate branding or even personal branding, both kinds ubiquitous in this Age of Labeling. (A student once asked me if he published in a low-level magazine, would that damage his brand?)
Let's talk about Effexor, the brand. There's a debate about whether there's a difference between generics and brands. They're supposed to be the same, right? But there are always some differences. If you want to read some patient testimonies, you can go here. The FDA says there's no important difference between brands and generic.
All I can say is that one kind of generic Atarax helps control my itching and one does not, and one brand of generic Buspar (with the rounded corners) helps with my anxiety and one (sharp corners) does not. I'm a sensitive sort. The FDA says that people might have a relapse (of depression, of seizures, of ulcers) that just so happens to occur at the same time that a switch to the generic occurs, and they'll blame it on the generic. But I swear that a recent switch to generic Effexor led to "breakthrough" weeping twice. In cases where the drug has an effect on emotions, it is impossible, I think, to prove that there's a difference. There's no way that you can compare yourself to yourself, except if you're living in Groundhog Day, and even then the outside factors shift each day.
This is why I paid nearly $100 today to Osco Drugs so that I could get a week's supply of brand-name Effexor so that I could compare myself to myself on and off the brand.
What happens if I find there's a big difference between the generic and the brand? Then I have to appeal to the insurance company, and last time I did this, headquarters misplaced my paperwork and then refused to allow me to buy the brand name for the generic price. Eventually I got off the drug because of news that it interfered with Tamoxifen.
Tonight I was riding my bike back from the Y and thinking how much I felt like myself. Which is a slippery slope in the creative nonfiction biz, because the Weltanschauung in academic/professional circles is that everyone has personae and you can't "be yourself" in your writing because there is no consistent self. I do remember reading an advice book or essay when I was young that attacked the hoary notion that you should "be yourself," asking in so many words, Who is this vaunted self? and arguing that our selves are not yet formed in teen-age-hood and that we should conform and be tactful. I've tried to find the quote in How to Get a Teen-Age Boy and What To Do With Him When You Get Him, but all I found is that the author died of cancer in 1995.
I remember reading Peter Kramer's Listening to Prozac where he talks about a patient who says she feels more herself on Prozac. Commentator Sherry Turkle had this to say about the notion in Life on the Screen: Identity in the Age of the Internet, published 16 years ago:
If a patient on the antidepressant medication Prozac tells his therapist he feels more like himself with the drug than without it, what does this do to our standard notions of a real self? Where does a medication end and a person begin? Where does real life end and a game begin? Is the real self always the naturally occurring one? Is the real self always the one in the physical world? As more and more real business gets done in cyberspace, could the real self be the one who functions best in that realm?
All I know is that I haven't wept since Tuesday--this "I" being the self that moves in the world and the self that stays at home.

******
(Illustration: I Am Half-Sick of Shadows," Said the Lady of Shalott by Sidney Harold Meteyard. 1913. Oil on canvas 30 x 45 inches. Private Collection, Europe [as of 1985].)

the doom of it

2011-08-29T14:58:00.009-05:00

B reminded me that when her physical pain was so great years ago, she had told me she thought of suicide, and then later, maybe months or years later, I'd said, Aren't you glad you didn't do it? I didn't remember the conversations at all. I think of Spalding Gray every time I have the attack of itching/stinging. I know why he did it. I can feel a parallel to what caused him to go over. I know what pain or discomfort (discomfort: such a plush, seemingly innocuous word) can lead you to do. Just to stop it. All you want is to stop it. I cannot stop weeping. I wept Friday because a medical resident smiled her way into the exam room, and I told her, I didn't think residents bothered me any more, and I was embarrassed that they still did. I feel attacked. I feel stripped apart. I feel taken, taken brutally, by surprise. I cannot believe my hyperbole. Many many years ago in an interview for an internship, I was shocked to be told that the length of the internship was not what I thought. To be told differently than what I'd assumed--I was shocked, embarrassed, into gaping silence. Because the world was not the steady thing that I thought it was. Or rather, not the steady thing I knew it wasn't, but needed it to be. Then again, all this, this being deeply felt despair, deeply felt sorrow, could be caused by a switch from the brand Effexor to the generic capsule. And last time I filed for a switch back from generic to another brand name medicine, the insurance would not allow. Not allow. To be boxed in. To have no choice. My father would say, Only a fool is happy all the time. He had no idea. No idea of daily despair. Of the depths. How bad it could get. There was only unhappy or total happiness. I didn't even hope for total happiness. I wouldn't have bothered to hope for it. Total happiness wasn't necessary. I agreed with him on that, I didn't demand such luxury. All I wanted was to be delivered from the darkness. To live in the world the way I imagined a normal person would. I knew that I might not receive this award or that one, or be accepted into the ivy league university I thought I deserved. I did not demand or crave a life that consisted of always winning. All I wanted to was to be released from the invisible choke at my neck. To start out looking the morning straight in the eye. On a level playing field, you could say. As if there were some guarantee from our alleged Creator that we would not feel each day as if life were against us.

****
To read about how Prozac changed my life, click here.

Success!

2011-08-10T10:16:00.006-05:00

This morning my hematologist Dr. Z called the Quick Dermatologist and got him to agree to increase my light therapy to three times a week. She said that I needed to see him quickly next time I was in Phancy for phototherapy. Then Dr. B himself called me and said he would increase the frequency and duration of the light therapy. He said that his office gets 200 calls a day, that he's short dermatologists, that in 10 years 35 dermatologists have left the practice, that there's a nationwide medical dermatology shortage because everyone wants to do Botox, that no one wants to live in Chicago because it's too expensive. So, hear ye hear ye, skin doctors of the world: Come to Chicago. It's cheaper than New York. He was going to prescribe doxepin, then I asked what it interacted with, and, alas, it interacts with parts of the Cancer Bitch cocktail.

So wherever you are, raise a glass to Dr. Z, hematologist extraordinaire, human being, researcher and newlywed.

****

Here's a recent article on the shortage, which doesn't mention cosmetic dermatology.

A 2005 article in non-scholarly magazine for dermatologists shows that the number of dermatology residents is increasing, but that the specialists are not evenly distributed around the country; there aren't enough dermatologists in, say, rural Mississippi. It doesn't mention the fancy part of Chicago.

The Suspense Builds...

2011-08-09T23:31:00.006-05:00

This is the fax I sent to the Fancy Dermatology Dept. today. I succeeded in getting an appt. Sept. 1 with another derma on the staff. But that's a long way away, counting in itch-minutes. This afternoon my hematologist said she'd call the dermatologist and see if she could get help for me. There is nothing stronger than Atarax, she said, except Interferon injections, which I don't want to start. She also told me I could take two Ataraxi at a time, assuming these are 10 mg. tablets. I looked and I have 25 mg. tablets.
Oh well.

To: Dr. B, Nurse R

page __1_______ of _____2_____, including cover page

Hello—I’ve left messages yesterday and today because I’m been suffering from severe itching and I believe that you can help me. It is frustrating not to be able to make an appointment or to talk to the doctor.

I have severe itching caused by my polycythemia vera. It had been under control w/ 24-hour antihistamine and hydroxyzine, and two sessions of phototherapy a week, up to 6 minutes at a time. Before, it was 3X week. The last dermatologist I met w/ was Dr. A, because it was too difficult to get an appt with Dr. B.

I had a fellowship in Western Mass from mid-June to mid-July, and found a dermatology office there where I had phototherapy 2X week, building up from 3 minutes to 5.

Mid-July traveled to New Hampshire and Maine, where it was hot and humid. Two horse flies bit me, which triggered severe itching all over. Despite antihistamines, the itching continued, probably exacerbated by severe heat, humidity, and high mold counts. (I'm very allergic to mold, but never had a skin reaction from it before.) I returned to W. Mass. for more light therapy, which helped some.

When I returned to Chicago in late July I was somewhat better, and then worse.I had to begin my phototherapy at square one, starting with 37 seconds/session, twice a week. This Saturday I had terrible itching after riding my bike about 30 minutes, and hydroxyzine helped for only a little while (on top of 24-hour Allegra). Sunday I stayed inside all day and as soon as I walked outside, I would feel itchy. I've called Dr. Brieva a few times yesterday and today, leaving detailed messages that were not relayed in their entirety. I unfortunately missed a return call from Dr. B's nurse, R. The problems:

1. Phototherapy protocol is that after a gap in treatment at Northwestern, the patient starts from square one--getting phototherapy for only 37 seconds at a time. The five-minute sessions in Mass. are not taken into account because every machine is different and they can't be compared. Are there any exceptions to this? Can I get a higher amount of light because I’m suffering?
2.I can’t get an appointment w/ Dr. B until Sept. 24. Because it is hard to get an appt with B, I saw an associate of his, A, last time. She's gone now, on a fellowship, and I suppose she has no prescribing power at Northwestern at this time. Or does she? Or is there another doctor I can meet with immediately?
3.I left two messages for B yesterday (Monday). I asked for an appointment, to talk to him, for a prescription for 3X week, and whether there was anything stronger than Atarax. The nurse called back today, for a few moments when I was away from the phone, telling me he would have to see me before changing the phototherapy frequency. I would be happy to see him but he can't see me until Sept. 24.

I would like, at least, to talk to Dr. B on the phone about having longer phototherapy sessions and more often. I’d also like to know if there is an Rx that is stronger than Atarax.

If this is not possible, I’d like a recommendation for a dermatologist in the Northwestern system who is easier to get in touch with.

Thanks,

Will it never stop? the annals of bureaucracy

2011-08-08T12:13:00.018-05:00

When we were in southern Maine in July we walked along the beach, got our legs wet, rinsed off, then started back up the road to our motel. This was during a nation-wide heat wave, and thus the cool temperatures that we had been seeking on the coast had eluded us. They were not within reach. The cool temperatures taunted us. From a large distance. So large that we did not know where these increasingly mythical cool breezes were. In Canada, maybe? Iceland? Greenland? Maybe. Or some place on the other side of the equator where it was already (or still) winter. But not in Ogunquit, where we had stationed ourselves, about a mile from the beach.

On the way back from said beach, two examples of what they call the official state l bird of Maine--the horsefly--bit my legs, one fly per leg, one bite per fly.
Both legs started itching and I started rubbing them against one another while I was walking so that I could scratch while going forward. And so for a few days I was itching all over.

This is not an unknown state for Cancer B(itch), whose polycythemia vera and accompanying itch have been documented on these cyber-visible-non-dimensional non-pages. The aforementioned blood cancer causes the itch. It was first manifested as itchiness after showering. One woman, Cancer B(itch)'s temporary dermatologist in Massachusetts, told her this summer, had apres-bain itching before she could be diagnosed with polycythemia. Which gives one pause. To have a symptom of a disease before your body registers that you have the disease. If that wouldn't make a person crazy, I don't know what would.

A Personal History of the Itch until Now:
The itch is as mean as a horse fly. It causes all-over itching, even after benadryl, 24-hour antihistamine, gabapentin and aspirin. In the emergency room, she discovers Atarax, and swoons.
The Friendly Hematologist said we will have to try Interferon if we can't control the itch.
But then she tells Cancer B(itch) of a dermatologist at Fancy Faculty Foundation who specializes in skin conditions caused by non-skin-related conditions.
The Quick-speaking, Quick-moving Dermatologist prescribes phototherapy three times a week, which means that three times a week Cancer B(itch) stands naked in a tank that emits purple light, UVB rays, that are successful in calming the itch. She still must keep taking antihistamines.
After a year, another dermatologist in the practice prescribes the phototherapy just twice a week, because it is doing its job. Cancer B(itch) has built up her tolerance and practice so that she stands for six minutes each time in the tank.
Cancer Bitch goes to western Mass. on a fellowship, and locates a dermatologist who provides phototherapy in a little folding tank upstairs from his little cottage of an office. He believes in patient-directed care, and so Cancer B(itch) continues her phototherapy for five to six minutes at a pop (Fancy Foundation has failed to send her medical records, but the dermatologist trusts her), twice a week. Her itch is under control, with the light and the antihistamines.
After the fellowship, she and L become cool-seeking devices on their way to New Hampshire and Maine beaches.
Enter the horse fly.

Cancer B(itch)'s itching is uncontrollable, except when she's inside in the air conditioning. L originates a plan to return to western Mass. for phototherapy. They cross three state lines in one day.
She is light-therapied.
She is less itchy.
The dermatologist opines that there are new allergens in New England that are causing the strong reaction.
It is better back in Chicago. For a bit.

This Saturday she and L ride their bikes about three miles to a union picnic. Her legs are itching, though she's taken a 24-hour antihistamine. At the picnic, it's worse. There is no air conditioning available. She takes a generic Atarax and after about an hour, the itching stops. But gets worse later that day, despite Atarax, and throughout the weekend when she goes outside.
There are theories:
1. It's the heat.
2. It's the humidity.
3. It's both. Cancer B(itch)'s theory is that it is heat, as well as the humidity, which is a sign of, well, general wetness, which indicates lots of mold spores floating around, mold to which she is allergic. The allergy usually causes a reaction in her lungs but for some reason the reaction is going straight to her legs (unlike food, which goes straight to the hips--you knew that was coming) because her skin is now the weakest point. It is compromised.
She is afraid to leave the house. This is not agoraphobia. This is φαγούρα-phobia. She and L start to walk to the card store about five blocks away and they have to go back and get in the car. It is that bad.
And what makes this all worse is that at Fancy, the nurses have made her start her treatments from scratch, beginning at 37 seconds in the tank, instead of six minutes, because that's the policy, which is based on the theory that all light tanks are different, so you never know the strength of the one you used elsewhere. You'd think by now there would be ways to measure that.
And--she can't up her frequency in the tanks to three times a week, because the dermatologist prescribed twice a week. And they can't call that dermatologist because she's on leave. The end. You'll be back up to six minutes soon, the nurse says, though that isn't true.
The Original Dermatologist is very busy (though he is quick) and Cancer B(itch) gets an appointment with him in late September.

Finally today she takes bureaucracy into her hands and calls the Quick Dermatologist's office at Fancy, and talks to an overworked, indifferent worker who puts her on hold about seven times in the middle of conversation. Success is achieved in the form of getting the worker to agree to take a message for the Quick Dermatologist. This is so very different from the way things worked with the Massachusetts Dermatologist, who was casual about appointments and writes a health blog and majored in Comp Lit in college.

I know this account is tedious, so tedious that maybe no one will ever get to this line that acknowledges the tedium. My friend S is recovering from a hysterectomy and waiting to hear whether the nodes that were removed are cancerous. I apologize for telling her about my itch. She says no no it's fine it makes her feel more balanced in the world to hear other people's problems, makes her feel less that she's only thinking of her own ills. As Steve Goodman sang,

And it ain't too hard it to get along with somebody else's troubles,
They don't make you lose any sleep at night.
As long as fate is out there burstin' somebody else's bubbles
Everything is gonna be alright.
And everything is gonna alright.

Steve Goodman photo--he died of leukemia

Photo of black horse fly from here.

Ozone action

2011-07-31T22:33:00.008-05:00

So tomorrow is to be an ozone action day in the Chicago area, meaning that those in "sensitive groups" who have sensitive lungs should limit their outdoor activity. And those who pollute (most of us) should try not to. As a sensitive grouper because of my asthma, I therefore should stay indoors in the air conditioning, which filters out many allergens and pollutants, but uses up much energy. And I shouldn't ride my bike, but if I drive instead, that's no good, either. I plan to row on the polluted Chicago River, which is filled with untreated sewage, though the EPA says it needs to be swimable. I like what BART does in the Bay Area: lets people ride the train free on when the ozone is high, on Spare the Air days. Free is always a good incentive. I think all public transit should be free. Which is a dangerous thing to say in these Government is Bad times. It used to be that the anarchists were the ones saying There's no government like no government. Now it's the guys in suits holding tea bags that they could steep safely if they wanted to because the manufacturer had to follow guidelines set by the FDA and OSHA and so on.

{photo courtesy of Tripadvisor}

Training

2011-07-29T17:08:00.006-05:00

So I get a robo-call from Rite Aid Pharmacy, where I got one prescription when I was in Massachusetts this summer. The computer voice asked me to input my date of birth, and then asked if I wanted to refill my prescription. It said that the call might be recorded for training purposes.

So another robot will listen to it and thus learn how to improve its customer service skills?

{Image from Metropolis}

Brain and Body

2011-07-29T00:31:00.003-05:00

The New York Times reports that moderate exercise, including light weight-lifting twice a week, can help keep your brain from deteriorating, at least at a fast clip. We are always worrying about our brains at Cancer Bitch HQ, and we are determined to use our left hand (when we remember) and to learn something new (chess) so that we can make new grooves in our brains--at least that's the way we imagine it. For various technical reasons, I have to put the New York Times' article URL here: http://tinyurl.com/3lhgptm
instead of hiding it under a highlighted word. But you can figure out how to find it, right?

On Vacation

2011-07-20T22:28:00.006-05:00

Haymarket Cafe, North "don't aspirate the H" ampton, MA:

Cancer Bitch has been studying African-American history in New England, and now she's on vacation in central and western Massachusetts. Please forgive her lack of posts.

"The Big C" returns

2011-06-26T16:27:00.004-05:00

I saw the cable cancer show, just once, last year, when it was launched. It was the only episode I could watch for free, since we don't have cable. If you so desire, you can read what I said here. It struck me as weird that she didn't tell anybody about her diagnosis. She just used it as an excuse to break away from her very very constrained life. (Watch for the new video, "Mets" patients go wild!!")The show is continuing, and a real-life melanoma survivor wrote a critique today in Salon. Mary Elizabeth Williams says, among other things: Much of the most interesting stuff surrounding a devastating disease is what it does to the people around you. And in that regard, "The Big C" shows improvement over last season. I'll have to take her word for it. Those of you who've seen The Big C--What do you think of it?

The new fountain of youth

2011-06-23T23:39:00.008-05:00

[This is how I would look having coffee in London in 1740 if I were male. I'm the one in the powdered wig and breeches.]

All of us are terrified about losing our memories. About getting Alzheimer's. About forgetting just enough to realize how much we have lost. About becoming piteous burdens. Coffee can help! It seems so simple, so American, so gung-ho we can do it--didja know that the cure was right in our cupboards? Well, it seems to be true. Mice who were given coffee or a coffee-ish substance could remember better how to run through their mazes or open the drawer that housed the cheddar, or whatever the scientists were having them do, better than mice who didn't get a cappuccino.

Specifically: Researchers at the University of South Florida found that the caffeine in drip coffee, as well as an ingredient in coffee that they couldn't isolate, can stave off Alzheimer's. And, there's more! The USF web site sez: An increasing body of scientific literature indicates that moderate consumption of coffee decreases the risk of several diseases of aging, including Parkinson’s disease, Type II diabetes and stroke. Just within the last few months, new studies have reported that drinking coffee in moderation may also significantly reduce the risk of breast and prostate cancers. This will be reported in the June 28 issue of the Journal of Alzheimer’s Disease, 25(2). More here: http://hscweb3.hsc.usf.edu/health/now/?p=19816

A cure for lymphedema?

2011-06-21T00:11:00.005-05:00

A French doctor has pioneered the transfer of lymph nodes from the groin or other body area to the underarm in order to put a stop to lymphedema, which is the painful swelling of the arm after breast-cancer surgery. It's caused by the removal of lymph nodes, which, according to some research, isn't even necessary. Doctors are performing the surgery experimentally here. You can read more about autologous vascularized lymph node transfer here: http://www.nytimes.com/2011/06/21/health/21lymph.html?ref=health

Note: This is not lymphoma we're talking about, which is cancer. This is "dema," as in swelling.

[Photos from mysassysleeve.com, which sells these covers to put over medically-necessary compression sleeves.]

News to me: estrogen is not the enemy

2011-06-19T15:18:00.003-05:00

Two gynecologists have told my friend S she needs a hysterectomy, which she is scheduled to have in August. She told me that the docs told her that hormone-replacement-therapy would be fine for her afterward. I was shocked, and told her that the reason that breast cancer numbers are lower is that women have cut back on HRT. She countered that the second doctor told her au contraire. I looked around the 'net and found that this news was broken six months ago. At the big pow-wow for breast cancer oncologists in December in San Antonio (a smart place to go in December) last year, researchers presented evidence that women who take estrogen and have no family history of breast cancer are not at risk for developing it. The American Association for Cancer Research reported on the findings: While endogenous estrogen (i.e., estrogen produced by ovaries and by other tissues) does have a well-known carcinogenic impact, hormone replacement therapy (HRT) utilizing estrogen alone (the exogenous estrogen) provides a protective effect in reducing breast cancer risk, according to study results presented at the 33rd Annual CTRC-AACR San Antonio Breast Cancer Symposium, held Dec. 8-12. So now it makes more sense that a gynecologist at Fancy Hospital (who is tuned into non-traditional, or as they call it, integrated medicine, which is really traditional, in that it emphasizes nutrition) told me a couple of months ago that I could have soy products, that they were phyto-estrogenic, but safe for me to take despite having had estrogen-eating tumors. But only soy products that were in a natural form--edamame, soy milk, tofu and the like, not texturized vegetable protein. I asked her later if she would be my gyne, but alas, she said that she worked only on the study I am taking part in--a screening to prevent ovarian cancer. She also said that I should have 40-60 grams of protein in the morning to help with my memory/chemo brain. Do you know how hard it is to get that, if you don't eat mammals? That's a heap of a lot of soybean. Not a horrendous amount of fish, or turkey bacon, though.

So what did they expect?

2011-06-17T21:20:00.003-05:00

Researchers in Portland, Oregon, found out that when people lost Medicaid dental benefits...they went to the dentist less, their dental health suffered, and they used the emergency room more often. On the one hand, I want to say, Well, wasn't this obvious? Why did you bother? On the other hand, I'm assuming this was done so that health-care activists would have some data to use in their arguments. In the meantime, the cavities yawn wider.

Test problems

2011-06-07T10:44:00.008-05:00

Ah, it can make life difficult from time to time when your basic fear is of annihilation. I'm afraid of my personality being squelched, of my person being killed, of my being being obliterated, not to mention my soul. I went to a Psychic Healer (neuropsych consultant at Plain University) because I'm concerned about my memory loss. I told him and his minions that when I was 16 I had some tests, and I became hostile toward the tester. Later I said I realized why: It was the individual's response to the notion and action of the testing experience, where the tester is trying to capture you in the confines of the test. So of course what happened was, after giving me tests that made sense (repeat this list of words, repeat this list of numbers, recall this image, add these numbers and these numbers, recall the animals in the first list but not the second list, etc., etc.), though were also annoying because they showed a cultural bias, the minion gave me the Minnesota Multiphasic Personality Profile to fill out at lunch. I was hoping to eat lunch at lunch and read about Reconstruction (of the South, not the breasts). Instead I answered True and False to statements like, I believe that working hard mostly leads to success. (In this economy? Among *all* people in this unequal world?) And: I fear earthquakes. I fear snakes. I fear spiders. I'm afraid of flying. I get upset before short trips. (Separate statements.)What is a short trip? I was anxious before driving to Valparaiso because I don't drive on highways much and I had to get myself organized to talk to a class and do a reading and an interview. Is 90 miles a short trip? Is going to Trader Joe's several blocks down? How about going half a mile to B and S's?

I was annoyed at the cultural bias (The world is generally a fair place.) and also at the lack of subtlety. Either true or false. Nothing in between. It was also decidedly archaic: I don't read all the editorials in the newspaper. If I were a journalist I'd like to cover sporting news. I remember that phrase exactly: sporting news. There were several statements about being a journalist. There was none, strangely enough, that said, If I were a journalist I would be depressed to be in a dying profession, and I'd probably be out of work and freelancing for my former employer at one-tenth the pay and without health insurance besides. Another statement was like this: I'm as happy as most people. What does that mean, in this land of foreclosures, in a world of war and suffering? As happy as most people? Even Freud famously and modestly attempted to restore people to ordinary unhappiness. Other statements: I have many brilliant ideas. I could be famous. I know more than some experts. People think my ideas are strange or peculiar. I could be a comedian. I'm assuming that a True would indicate mania and unrealistic ego inflation. But I have had brilliant ideas. Ten percent of the people I went to grad school with are famous. I know three MacArthur-certified geniuses. I was paid as a comedian in grad school. People do think my ideas are strange, and I think that's a positive. I've been analyzing culture through, as they say, feminist and Marxist lenses, for 25 years. I do know more than some experts. (But, Cancer Bitch, what if the statements have more to do simply with self-esteem and in the case of the comedy career, with optimism and sense of humor?)
L and my friend G the therapist say I shouldn't try to out-psych the test. Wanting to do so is probably a sign of a controlling personality and inflated ego. But I could have told you that.
And, said my other friend G: What if Maureen Dowd or Steve Martin took the test? What if a Nobel-Prize winner with truly brilliant ideas?
I decided not to turn in my answers. The Psychic Healer was annoyed. He said that the test helped him in his diagnosis. (Do you want to know what I fear? What I tell myself? What my faults are? If I'm anxious? For $20 I'll sell you any of my books and you can find out in any five pages. Or read this blog for free.) Yes, Cancer Bitch is hostile. Just like when she was 16 years old. Which disappoints her, she who wants to change into a better person. He gave me a test that he didn't like as much, but which I liked better, because there were gradations: False, Somewhat True, Mostly True, Very True.
But the main thing is, probably (and I could have told you this not much after 16), that I am afraid of being pigeon-holed. I'm afraid of a world going on without me. Of that old demon, Thanatos. Who isn't?

Time to parler that Frainch

2011-06-01T00:06:00.008-05:00

The New York Times says that we're better organized and more focused if we speak two languages. There’s a system in your brain, the executive control system. It’s a general manager. Its job is to keep you focused on what is relevant, while ignoring distractions. It’s what makes it possible for you to hold two different things in your mind at one time and switch between them, cognitive neuroscientist Ellen Bialystok told the Times.

--illustration from here

The catch is you must be truly bilingual--and not just put in a mot here and there. Bilinguals staved off Alzheimer's for four or five years, and they were better able to multi-task. You can argue that multi-tasking is our problem, that we need to breathe, slow down and do one thing at a time, rather than two things a la fois. I am so happy when I'm speaking French. Should I strive to become truly bilingual? And in French rather than Spanish, which more of my fellow Americans speak? But for those of you who are thinking of speaking another language more often or studying another language--vas-y!

I had trouble finding a good bilingual image. Let me know if you have some better ones.

The wonders of jagua

2011-05-23T01:03:00.006-05:00

Jagua is a fruit-based temporary dye. It is not black henna, which is henna mixed with black hair dye, and can cause all sorts of nasty blistering and infection. No, jagua is no such animal. With a tube of jagua gel (and without using the little pointer tip until the end, because I was too lazy to go upstairs and look for it), I created a medusa on the top of N's new chemo-head. N is getting chemo, then surgery, then radiation. Then more surgery. I mention the lack of pointer tip, because without it, the gel came out too quickly and I think I wasted some jagua. In any case, it took a whole tube to form the medusa and snakes. This is how it looked when I finished:
I was copying freehand from a design and I think I made the medusa too friendly-looking. Here is how N looks from the front:

The pictures were taken when the ink was still wet. When the jagua dries, you peel it off and underneath it's like dark gray paint. It can last up to two weeks. When N sends me a photo of it after it's peeled off, I'll post it here.

Pregnant and diagnosed with cancer--not the end of the world?

2011-05-16T23:49:00.005-05:00

CNN
reported this morning about women who survived chemo while pregnant and gave birth to healthy babies. Usually, it's simply a terrible accident of timing: The pregnancy has nothing to do with the cancer's emergence.

You might be thinking that higher hormone levels are causing cancer at this time, but CNN reports that studies show that pregnant women are more likely to have hormone-receptor negative tumors than hormone-receptor positive tumors--meaning they are not fed by pregnancy's higher levels of estrogen and progesterone.

If You Recall the Past in Detail, You'll be Less Depressed than if You Recall it Only Generally

2011-05-11T00:53:00.006-05:00

Australian firefighters who experienced trauma were more likely to have PTSD if they couldn't recall the events specifically.
That is what the New York Times is telling us.

The Times reports: “People with P.T.S.D. tend to ruminate at a very categorical, general level about how unsafe life is, or how weak I am, or how guilty I am,” said the lead author [of the firefighter study], Richard Bryant. “If I do that habitually and then I walk into a trauma, probably I’m going to be resorting to that way of thinking and it’s going to set me up for developing P.T.S.D.”

Overgeneral memory can protect people from traumatic memories and such people have it easier than those who think back to the trauma specifically--in the short term.

Without detailed memories to draw upon, dispelling a black mood can seem impossible. Patients may remember once having felt happy, but cannot recall specific things that contributed to their happiness, like visiting friends or a favorite restaurant, according to the Times.

“If you’re unhappy and you want to be happy, it’s helpful to have memories that you can navigate through to come up with specific solutions,” Dr. Williams said. “It’s like a safety net.”

Mindfulness meditation can help people accept their negative memories and not ignore them, according to Dr. Williams. “I always tried to forget the past, the very bad past that made me depressed when my husband died,” said Carol Cattley, 76, who attended a mindfulness course here [Oxford, England] taught by Dr. Williams. “I’m much more interested in it now.”

[Image: Meditation by Alphonse Mucha]

The MAAMies

2011-05-09T14:06:00.006-05:00

The votes are in, and Cancer Bitch did not win a MAAMie this year, but CB congratulates the winners of Mammogramatically Challenged And/Or Also Metsters [meaning those with metastasis] blogging awards nonoring those who disrupt the cancer culture status quo.
Click here to read more.

***
Image: © Chnutz vom Hopfen
From an issue of Romaunt de la Rose, 15th century

Statute of Limitations on Chemo Brain is Extended or: Where Did That Noun Go? Check Back in Five Years.

2011-05-05T01:20:00.007-05:00

The New York Times Well blog reports that chemo brain doesn't necessarily fade away after a year. It can last up to five years. Or more. Researchers measured the cognition of 92 surviving patients who had blood cancer treated by chemo as well as bone marrow or stem cell transplants. According to the Times, the results should be the same with people treated for breast and other cancers. Read the abstract here in the Journal of Clinical Oncology.
Judging by the abstract (which I'm sure isn't fair) this study seems pretty loose. Are the same chemotherapy drugs used to treat various kinds of cancer? Were certain chemo potions more likely to render their recipients word-less? I looked for the complete article via Smart University's online library, but could not find it. I'll keep trying.
[Illustration: women hunting for nouns that escaped from the tips of their tongues. Also deer.]

Another temporary bald head

2011-05-04T01:31:00.005-05:00

Nicole Xylouri Osborne is going through chemo with attitude. Here she is with her new "do" by Sheba of Sparrow.

I have been remiss

2011-04-26T01:42:00.005-05:00

Please excuse Cancer Bitch's absence from her blog for the past week. Wait--it's been longer than that. She's been, uh, observing Passover. Obsessing about her failing dental implant? Overwhelmed by the New York Times Magazine articles on cancer last week and wondering how to summarize them and then as more time passed, figuring that it was too late and time to write about the next new cancer thing which is what?
***
The bad thing about hanging out with people w/ cancer is that they can die on you.
Friday was the funeral of Cindy Gerstner, whom I knew from ROW. Just below is a picture of Cindy with her daughter at a ROW open house last year. When I met her, her cancer was already Stage 4, but she was rowing with the rest of us. She was one of the few if not the only one of us who'd rowed in college. She spoke at our fundraiser in September and came to our regatta in Wisconsin that fall, even though she didn't row.
Our coach J wrote about Cindy in her blog. Cindy was a professor of biology and ecology and she was so very matter-of-fact about her disease. There are other women in ROW who are Stage 4--for some reason they are the trimmest and strongest-looking of our bunch. They remind us that cancer is more than fun and games.

Still Focused on Myself

2011-04-13T02:11:00.004-05:00

I made an appointment to see the periodontist (pere) on Wednesday because I am still in dental pain. His son did the implant but has been out of the office. I realized today that I have:
a dentist a periodontist
well two periodontists
a podiatrist
an internist
an oncology gynecologist
a plain gynecologist
a therapist
a psychiatrist
an oncologist
a hematologist
a surgeon and accompanying rotating radiologist
and I think that's it. If I were Tom Lehrer I would have already written a song about it.

[Image: one of the elements in Lehrer's song]

Just one sentence about me

2011-04-08T14:39:00.002-05:00

The antibiotic I'm taking to get rid of the infection from my dental implant precludes me from getting my twice-weekly phototherapy that is necessary because it helps with the intolerable itching caused by my blood cancer.

[Image: Victorian Blood Book, from the library of Evelyn Waugh, now at U of Texas, http://www.hrc.utexas.edu/enews/2009/february/bloodbook.html]

Does "support" include treatment?

2011-04-01T10:33:00.011-05:00

Komen just received a $1 million grant to tell poor ladies in the Rust Belt about breast cancer. Over the next four years, the program will train nearly 500 lay health advisors [first in Ohio, then east and west] to provide education and outreach on breast cancer in 17 communities served by Key Bank and Komen Affiliates nationwide. Lay health advisors will provide information, referrals to health care resources, one-on-one consultations, assistance with scheduling, support during health care visits and more.

Komen founder and CEO, Ambassador Nancy G. Brinker, said the grant will help Komen reach women who otherwise might not be helped. “These women may be unaware of their risk for breast cancer, unable to access the health care system for answers, or unsupported if they do need treatment. Our mission is to ensure that all women have the information and support they need to confront this disease. This commitment from KeyBank Foundation will help make that possible.”

Are these women going to be treated for their cancer? Is Komen going to get them mammograms and biopsies and MRIs and surgery and chemo and radiation? Will these disadvantaged women be trained to find out what they need, and then discover on their own that they can't get it it? I'm all for helping people who need help, but there's help and then there's help. The adviser can make an appointment for you, but who's going to foot the bill?? I can't find any more info about this on the web, and we bloggers are known as parasites of mainstream media, feeding on what's already out there, ready to quick-draw our opinions. Oh no, does this mean I'll have to do some original reporting? Stay tuned.

I Love Prednisone & I ain't foolin'

2011-04-01T01:20:00.007-05:00

I love prednisone in the summer, I love prednisone in the fall, I love prednisone in the winter, and I got my hands on some today because I am very very lucky and this doesn't have to rhyme.

I've had two itis-es since Saturday: laryng- and bronch-, and finally went to the doctor today. I was already on the mend. That's how it always works. She told me to use my inhaler every four hours but the albuterol wasn't doin' nothin. So she gave me 10 20-mg tablets of prednisone--co-pay only $2.40. What can beat that?

I love prednisone because it's the one thing that always cures my very bad asthma or bronchitis. I try to avoid it because it's not good for you--I treat it as the last resort. In fact, I wrote a long poem about it as last resort many many years ago, when I was at a resort of sorts, an artists colony in the middle of allergens. The poem was almost accepted in a feminist magazine's special issue on invisible disabilities, but the editor objected to a line about breaking the back of something, maybe capitalism. It was ableist to be seeing a broken back as negative, that was the argument, though the back that was being broken was sheerly metaphorical. Maybe that made it worse. Anyway, it's probably one of the better poems in English about prednisone.

Stanley Elkin wrote a wonderful essay, Out of One's Tree: My Bout With Temporary Insanity, about craziness caused by high doses of prednisone he was taking to treat breathing problems caused by his MS. He might also have been taking it for the MS itself. I sent a copy of the Elkin essay to my cousin D, after our family dinner was briefly interrupted by a call from one of his patients. D is a psychiatrist, a psychoanalyst yet, and I think he had to admit his patient to a hospital because she was suffering from prednisone side effects. But I never take it long enough to be so affected. I don't think.

Cartoon for the day

2011-03-29T23:18:00.002-05:00

Scar project

2011-03-25T02:13:00.006-05:00

I just came across this. This is one of a number of pictures of young women 18-35 who had breast cancer. The photographer is David Jay and you can find info about his book and project here.

I don't particularly love this picture with its S&M overtones (Hang 'er on the rack! It's not enough that we've sliced off her breasts!) but at least she's pretty and sexy in a Hollywood noir kind of way, and more importantly, it was the only photo from the web site that I was technically able to copy and paste.

Hill of Beans

2011-03-23T21:04:00.008-05:00

The Huffington Post reports that scientists at Stanford have figured out a way to turn anxiety off and on in mice. About one-fifth of Americans are anxious in any given year, says the Huff Post, allegedly quoting the NIH, but the link didn't lead me to the source.

The scientists found ways of stimulating cell projections in the amygdala section of the brain, causing mice to be less anxious, and seem emboldened, spending more time exploring open spaces than control mice.

They sound like the mice I had in my old place. They would run around the kitchen with impunity, and stand there in the middle of the floor with the lights on, looking around. I don't know what emboldened them. Maybe their drinking water was contaminated with Prozac.

So here are many questions: What does it mean that one-fifth of us are anxious at any given time? Have humans always been anxious and are we only now finding a way to keep track of the numbers? Are we more anxious now because of our fast-paced life? Or eating food additives, or living with the minute hand so close to midnight, or with constant reminders of war and terror and uneven distribution of wealth?

Maybe we should be anxious. Since the invention of the telegraph, we humans have been able to transmit news of death and destruction immediately all over the world. Our species has grown cognizant that the earth is fragile. At the same time, we've been assaulting the earth with toxins, pollution, strip mines, cement and so on and so forth. Nature (tsunami, earthquake) combines with culture (nuclear reactors) to extend disaster.

Does anxiety to lead to working for social change? That's the real question. If we weren't all medicated, would we be up in arms more? Are we sedated and inert? Probably not. When I was at my deepest level of anxiety, I wouldn't answer the phone because I would start weeping. I was not in the mood to go to a rally or knock on doors. On the other hand, does political action lead to feelings of connectedness and mastery and increased self-worth? Yes, it can. So as the song says, Don't mourn, organize (while it's still legal).

... it doesn't take much to see that the problems of three little people don't amount to a hill of beans in this crazy world. Someday you'll understand that. Now, now... Here's looking at you kid.

Midnight in the Garden of Mammos

2011-03-17T00:21:00.016-05:00

[still from CBS]

Today's Trib had a story about mammogram parties at local hospitals. Apparently this has been going on for quite a while. CBS reported in 2007 on midnight mammogram parties as well as mammogram parties earlier in the day. The idea is that women get together to make a party out of their annual checkups, employing chocolate, wine, cheese, flowers, manicures, camaraderie, massage to help them bear the painful pressing of the mammograpy machine. The funny thing is that the Trib had a story on this in 2010, as well as 10 days ago, by a different reporter, in the Des Plaines local. Today's (3/16/11) story says that the parties are for women who have not had cancer. Oh well. I had a farewell party for my breast. (You can see photos of it on the right.) Apparently that's old hat. And not above reproach: Writing in Jewish Woman magazine in 2010, Elicia Brown quotes Barbara Brenner, executive director of advocacy organization Breast Cancer Action:“People respond to crisis in whatever ways they need to cope. That’s what’s positive about this,” [Brenner] says. “But selling T-shirts, throwing Bye Bye Boobie parties—how does that get us closer to ending this epidemic? How does it get us closer to better treatment options that increase the quality of people’s lives? Too bad we can’t throw a Bye Bye Breast Cancer party!”
Too bad, but in the meantime, why not have fun while looking death and disease in the eye? Isn't that the basis of most rituals and festivals?

[Skull by Thaneeya McArdle]

In Qatar

2011-03-12T21:53:00.006-06:00

It used to be that people wouldn't talk about cancer, especially breast cancer, and that women who noticed lumps would wait months and months and maybe years to get treatment. That's how it is in Qatar, according to a short video. Watch the film in a quiet place, because the volume is pretty low, at least it was on my computer.

Two million of us

2011-03-12T21:22:00.002-06:00

There were 2,591,855 survivors of breast cancer in the US on January 1, 2007. That's according to a new study released by the Centers for Disease Control and Prevention and the National Cancer Institute. That's quite impressive. It comes to 22 percent more survivors since 2001 for breast cancer alone, and 20 percent for cancer overall. More and more are living with the disease, though there's living with and living with. Living with, for example, could actually mean dying. As the report states: Finally, the data do not permit specifying whether a cancer survivor is cured, in active therapy, living with a chronic cancer-related illness or disability, or dying from cancer.

Oh well. If you read the comments after the New York Times article about this, you get more food for thought. The commenters say that doctors over-test and over-diagnose, that survival isn't the be-all and end-all if you're out of work and the bank has foreclosed on your house, that toxins are still swirling about around and inside us.

I don't know what statistics would be more meaningful. You could see who has Stage 4, and count those people as soon-to-be-non-survivors, but then again some people are living with Stage 4 of various cancers. I suppose everyone is a survivor until they croak.

News flash: Hot flashes are good! Or at least not bad for you!

2011-02-26T00:29:00.009-06:00

Is it hot in here?

A new study of menopausal women shows that hot flashes aren't all bad. We found that women who experienced symptoms when they began menopause had fewer cardiovascular events than those who experienced hot flashes late in menopause or not at all, says endocrinologist Emily Szmuilowicz, lead author of a study that will be published in the June issue of Menopause magazine. (For some reason, unlike AARP, Menopause magazine doesn't automatically find you when you're at that age.) You can read an abstract of the paper, titled “Vasomotor symptoms and cardiovascular events in postmenopausal women” here. Or the Northwestern Memorial Hospital press release, which is easier to absorb, here.

[painting: Hell by Bosch]

Man speaks for woman

2011-02-24T01:04:00.009-06:00

O O O this should not bother me, but after all I'm the Bitch, and so many things can bother me that wouldn't bother a non-bitchy person. There's a woman who was diagnosed with breast cancer at Sloan-Kettering, just one of 200,000 women who will hear that the test was positive this year, and the noteworthy thing about her is that she's the Wife of a Doctor. A Doctor at Sloan-Kettering, and ain't that ironic or crazy or what-have-you, and since this is the age of irony, her husband gets to write about the experience in the New York Times. Am I jealous? Yes. Is that what's fueling my ire? Yes. No. Am I annoyed that he writes in an ungainly fashion and strains when he makes comparisons and isn't very interesting? Yes. Am I jealous? O, we covered that. Sort of. It's in the New York Times blog, not print, and since cyberspace is everywhere and nowhere, in a way you could say that it is not in the New York Times, or you could say it is there and everyplace else in the known world. But even at the blog, aren't there editors? Must not be, otherwise we wouldn't have such sentences as: The late nights along the Seine were as dark and dreary as the sunshine was bright that Wednesday morning on the Upper East Side of Manhattan.

The author is a doctor at Sloan-Kettering. What kind of cancer doctor? No one says. He admits that the white coat has been his protection against involvement and emotion. But anyone who's ever visited a hospital could tell you that. He also has pull, not surprisingly. He tells us that they got an appointment with a friend who's a breast surgeon: When I told him Ruth had felt a lump, he had made room to see us right away.

Which is nice. And I'm sure they have insurance, which is good because I doubt that professional courtesy would pay for all her subsequent treatments. Which is good for them, especially since they seem pretty young and it appears from this first installment that the cancer has spread to her lymph nodes. (Though you've read here that removing cancerous lymph nodes may not be required, after all.)

Of course, a more erudite decision on the part of the Times would have been to tap (virtually) the shoulder of the Cancer Bitch and offer her the blog spot. She could write: When the Cancer Bitch has Blood Cancer, a comedy of manners that has not yet ended. But the tap was not received, no messages were left. And a more relevant and important and serious decision would have been to get an uninsured woman to write about her breast cancer. Or, second best, the husband of said woman. Or daughter. Finding such a person would be easy--it is said in these parts that a scoffing full professor (the kind who hires adjuncts) once said he could spit outside the window of his office downtown and spray any number of PhDs, the point being that those with doctorates in English should be grateful, o so grateful, hat in hand and bowing and scraping, if and when they were offered a couple thousand dollars for teaching a course as an adjunct. So too, unapocryphally, you could walk to to the county hospital here, named for a politician, John Stroger, who spent his last days, comatose, in a private hospital (Fancy Hospital, in fact), and find hosts and hosts of people without health insurance. Interestingly, ABC News told us: Stroger lost a brother who was turned away from a segregated hospital in the South, and the availability of quality healthcare became his pet issue. He struggled for decades -- sometimes alone -- to make sure the Cook County Hospital remained open. There was a libertarian Republican named Tony Peraica who ran against Todd Stroger, son of John, for Cook County Board president, and I didn't like Peraica's politics at all, but I had to appreciate one commercial in which he said he would improve Cook County Hospital so that it would be good enough for John Stroger to go to. Peraica lost and Stroger died and Ariel Sharon remains cocooned in his own coma, and I think no one in Israel has the chutzpah to pull the plug on him. The photo above right is of a sculpture of Sharon by artist Noam Berlavsky.

The transformation implied in the blog, I think, is that a doctor regains his vulnerability and dare we say humanity, not to mention humility, when he is the spouse of a patient, and not a Doctor draped in sanitary whites. This is a tricky concept, because we writers would tell him that the story is his--but if he makes the story too much his own, he will seem like a cad because it's his wife who was stricken. The best thing for him, in order to remain a sympathetic narrator, is to contract a serious disease himself. But such things take time.

The Bitch Ponders, Part 5

2011-02-21T02:09:00.006-06:00

Before I left for the conference I was talking to L about the Friend Who Will Not Friend Me on Facebook because she's been mad at me since the Carter Administration, and L said calmly, Maybe she was a friend for a season.
A friend for a season.
Yes, she said, some people are just friends for a season. When the season's over, you have time and space for more friends.
It sounds like clearing out your closet of old clothes so that you'll have room for new ones. What is so precious about old friends anyway?
They remember the same things you do, even if they remember differently.
At lunch with my old friend A, we talked about how in 1984 we stayed in S's house in San Salvador, and I said, How did that happen? And she said, You were friends with him, you arranged it.
It must have been so, though I have no recollection about how I made arrangements with S for us to get into his house when he was gone. Gone where? On assignment somewhere in Latin America. I remember that he and another foreign correspondent, J, maybe his lover? we wondered, arrived just as we were leaving. I know that I knew who he was. Maybe we were friends. Or friendly acquaintances.
There's someone else from that long-ago newsroom who is now living here and I can' remember: How friendly were we? What I really mean is: Does he remember me? I must have spoken with him but I don't remember ever going out with him in a group or talking to him at a party, though I must have. We were all, as one editor liked to put it, insecure over-achievers, in our twenties and thirties and we worked hard and some of us suspected that the Glory Days had ended when an iconoclastic editor had left (just before I got there). In his place were corporate citizens. Now of course we look back and see that those days in the mid-80s were the glory days, when the Miami Herald was much much fatter, and the Sunday magazine still existed, on glossy newsprint, and the Miami News still existed as a spindly competitor, and Management gave us money to travel to do national stories when there was really no good reason to do them except some editor's whim. And I wrote some good things but I was wrapped and cloaked and covered and corseted by anxiety. If only there had been SSRIs in those days! I did take an anti-depressant for a spell, which gave me cotton mouth and buoyed me up some but ultimately didn't do the job. I remember telling M at the next desk that I was taking them. (My reunion with M after 26 years is covered in the previous post.)
***
Old friends give you back part of your life. They remember what you were like. They burrow deep into you. If you're lucky.

The Bitch Ponders, Part 4

2011-02-17T00:28:00.004-06:00

After dinner one night at the conference, a group of us went to a party in a bar hosted by some literary magazines. I was talking to K, and a guy came up to her, and he looked familiar. I looked at his badge then told him to look at me. He looked and recognized me. It was M, whom I'd thought that I might see at the conference, since I knew he had entered a creative writing program. How odd that sounds--entered. But that is what you do--enter, begin, enroll in, matriculate into. We had been friends, confidants in the newsroom, but we hadn't seen one another since 1985. We both said the other looked the same. He was all hepped up on the notion of story, of story as a basic human need, hard-wired into our bodies, or wherever that hard wire goes. Our DNA, that's where. Then there were three of us--a Coastal poet he'd met on the street--and they were equally exhuberant about story. Everything is story, they said, and I said, no, ideas aren't story, description isn't story, and they said, no, it's all story. M had started a magazine which features the stories of "ordinary people," and other "ordinary people" are hungry, hungry for these stories! He is in love with story, she is in love with story, and I like a good joke now and then, but I think there's reflection and meditation and argument, though I could accept the argument that an argument is a story, because it moves linearly, or should. He was full of zeal for story, and for the character in his newish book, he was like an actor who learns his lines and character so well that he falls in love with them and him and must tell you about them or portray them because he has built so much energy around them. I would have preferred gossiping all night about the people we'd known in the 80s but it was pleasant enough to pal around with this old and this new friend. Oddly, we did not make story out of our friendship. But we could. And so there was one old friend who was still a friend, though I hadn't doubted it. Some friends you just fall away from when one of you leaves town. Despite the miracle of modern technology, etc., etc. And if you are in the same town one night, all the elements that created it are there and the friendship comes back alive.

The Bitch Ponders, Part 3

2011-02-13T00:22:00.008-06:00

So I talked (immediately, the wonder of cell phones) with an old friend right after The One snubbed me or appeared to snub me. The friend said something to the effect that the erstwhile friend must be screwed up to act that way. I don't know. Sometimes we just want to avoid entanglement.

The next night I dreamed that my friend A from the Miami Herald was part of a case that was being heard by the Supreme Court. I also dreamed that the Erstwhile Friend had indeed kept in touch with me from time to time, sending me photos that I had forgotten about, and that she had a reason for not staying in touch. It had to do with not wanting to live in her past.

When I had lunch with A on Monday, she happened to mention that she'd written to Supreme Court Justice Sonia Sotomayor. Hah! Am I gifted with second sight or what?

I had a good friend from junior high who, I am told, wants to keep the past the past. She doesn't look to connect with old friends on Facebook, which would mean connecting beyond cyberspatially. Oddly, her mother is willing to friend her daughter's old friends. Are we baggage? Are we time-stealers? It could be she feels she probably doesn't have much in common with us any more.

This is what you don't understand when you're young: that there are some people who will prove to be your Lifelong Friends; and also that you have a place in family (well, some of us do) and because that place is set by forces beyond you (your conception, for example), it is solid, you can see it, your name, even, on a family tree, and your place and relationship with others are therefore unshakeable and irrevocable. There were those before you and those branching after you, even if they're nieces and nephews and young cousins and not your own offspring. Family can of course turn its back and change its name and walk out on you forever (providing fodder for infinite contemporary memoirs), but much of the time it will be there and family will serve as the Ones Who Knew You When. They will be your Old Friends, whether you like it or not.

Lunch with A was quite natural and wonderful and I had decided, though we hadn't seen one another since 1987 or so, that we would always be Lifelong Friends because we had shared a night when we both thought I was dying (cause: street food in Guatemala City), and a morning where we thought the revolution had come to the street in front of our hotel. We tied white socks around our arms to signify neutrality and ventured outside to find out that the 6 a.m. smell of gunpowder had come from a parade at dawn. At dawn? It could not be a civilized country, because who would hold a parade that early? Or was it Honduras? I should ask.

--to be continued--

The Bitch Ponders, Part 2

2011-02-11T01:09:00.008-06:00

[Samuel Johnson, 18th century]

To continue the post before the one before this one:

I also thought that at the conference I might see M, who I worked with at the Miami Herald, he was my friend and neighbor (as in don't talk to your neighbor, schoolteachers would say; he was in the desk behind me, I think) and confidant. I knew he was getting an MFA in creative nonfiction.

So I am at the conference. I am invited to the cocktail party put on by ** University, where The One received her master's recently. Before I go, I'm standing in mezzanine level of the hotel and looking down and I think I recognize her in the lobby.

At the cocktail party. There she is. She is at the buffet and I am at the buffet and she is talking to someone and we are this far apart--but she is talking to someone and I say nothing.

Then I am talking to the person I came to see at the party. We talk for quite a while. Then we part and I am at the cocktail party saying hello to a young writer I know from a Jewish women's reading we did together. Then I am in the next room and I see The One and she is talking to a man in a dark suit. Next time I turn around to approach they are still talking but they have moved about three feet away. And the next time, three more feet. I am defeated. I do not want to pursue. It seems too difficult, psychologically, to trail them and insert myself inside their conversation. And then the next time I look, they're gone.

I am so agitated. I am so so sad. I am 90 percent sure that she saw me. I talk to an old friend from those days who says it is sad that The One cannot forgive me, that she is still holding on to that anger. That she should move on beyond that. I go downstairs to catch up with people I'm eating dinner with and I'm still sad and I tell them and slowly during dinner the sadness and agitation dissipate.

I still don't know if I'm thinking about The One and making the Sighting so important because she has rejected me. I remember a friend who broke up with his girlfriend then wrote her letter upon letter, and I thought it was way way too much, that he was besieging her, but then he went back to visit her and they are now married 15 or more years with two smiling children. I thought his pursuit was extreme, but I was wrong.

What am I so eager to talk about with her? What am I so anxious to discuss? I want to talk about the teenagers we were when we were starting college, and I want to know if journalism was ever as difficult for her as it was for me (crying in sheer anxiety before interviews), what she's learned in the years that she pursued that profession while I pursued style and "self-expression," why she decided to study "creative writing" and what she learned that was different from her everyday. My everyday is taken up with the study of the masters of the essay, and the current practitioners, and reading that I will use in my own work that I struggle to find a structure for. Only an idiot would ever write for free, but we, my brethren in the creative writing world, do it all the time. (As Samuel Johnson put it, No man but a blockhead ever wrote, except for money.) We are innovators and thinkers and we are trying to convey meaning shaped in pieces that will last quite a while if not forever, but these pieces are not valued enough, and so though no one crosses our palms with silver, we offer our carefully-honed work to magazines that serve a thousand or five hundred or fifteen hundred. We write these things because we have to and how odd odd odd it is that someone who is making a living at journalism would choose to study how to write more exquisitely and for a much smaller audience.

Or maybe she is wanting to write books, and for a large audience.

--to be continued--

No no, don't go for the nodes

2011-02-09T23:47:00.008-06:00

We interrupt Cancer Bitch's complaining about a lost friend to deliver the strange news about the necessity of removing lymph nodes. Apparently surgeons don't need to take them out as often as they've been doing. The Journal of the American Medical Association reports on a study of women with invasive breast cancer who had lumpectomies, radiation and sentinel node biopsies. That means that the lymph node closest to the cancer tumor was removed and examined. Usually doctors have responded to a cancerous node by removing more nodes. The new study shows that women who had a cancerous sentinel node removed only, but no other lymph nodes, had the same survival rate as women who had the same treatment (lumpectomy, radiation) and had 10 or more more lymph nodes removed. The problem with removing multiple nodes is that they increase your risk of lymphedema, which is swelling of the arm. Women with lymphedema are the ones wearing those compression sleeves (and people say they're a drag to wear, even if you cover them with cool designs from My Sassy Sleeve, shown above.)

The New England Journal of Medicine reported on a similar study last month. The American Council on Science and Health noted that the New York Times didn't report on the earlier study. This new report, says the ACSH's Dr. Gilbert Ross, makes it apparent that we have at least two strong studies that show pretty clearly that for certain populations of women with small breast cancers, the survival benefit from radical lymph node removal is outweighed by lymphedema and other complications.

So, Woodman, spare that tree!

The Bitch Ponders

2011-01-30T21:27:00.010-06:00

Part I.
I am going to a conference and I am pretty sure I will run into The One Who Does Not Want to Friend Me, On Facebook or Otherwise, and I find myself obsessing about this every so often. We were best friends the first quarter of freshman year of college and I came across a very lovely card she sent me over Thanksgiving that year, about how she felt so different from high school friends she talked to, because they were not feminist or interested in careers and she was. She was so very interested in careers. We were both in journalism but she had done more Out in the World than I had. As a high schooler, she'd interned at a real daily newspaper, while I had worked at an amusement park for two summers. I had worked on the newsletter for employees of the park. She had also won or placed in a national creative writing contest sponsored by Seventeen Magazine. (Maybe international, if you count Canada.) I had sent in to a Seventeen contest, but I was so ignorant I didn't know I was supposed to send a copy of a high school newspaper article I'd written, I mean I sent a clean, typed copy of the article, and *not* a photocopy of the newspaper that contained the article. I try to remember that, when students ask me questions that seem to show they have not one iota of common sense. I wouldn't say that I competed with The One; it was a given that she had achieved more; I may have considered her to be in a quite separate realm.

I remember I was an Honorable Mention in a contest, but I don't remember for what. And I had two trophies--one from a citywide journalism contest and the other from a Jewish organization that sponsored a writing award. I remember it as the Seymour Cussworm Award, but that sounds like a made-up name. In many ways I peaked in high school. In college and graduate school I was average or below. I would like to think that I am still on my way to my peak. As Nora Ephron wrote once, in the essay "On Having Never Been a Prom Queen": I am, in fact, at this very moment gaining my looks.

I just googled again and found the Sidney G. Kusworm award, but it is for community service. He was head of Americanization for the B'nai B'rith and served on Truman's civil rights commission. All of this giving Seymour an intractable inferiority complex, of course.

I ask you, ladies and gentlemen of the jury, was it my fault that I broke up with my boyfriend freshman year, and then got back together with him a few weeks or month later? It may have been sophomore year. I assume that was my transgression, according to The One Who Will Not... because she went out with him after we broke up, and I guess he broke up with her in order to get back together with me. But shouldn't she blame him and not me? And shouldn't I have forgotten this in the decades since?

I do emphasize the negative; I think of The One... instead of A, whom I have not seen in about 20 years, and with whom I will have lunch a week from Monday. A is a lovely and intense person, with blond hair, blue eyes, a cherubic face and soft voice, who brought down a corrupt mayor with her reporting. You may remember Coleman Young and the krugerrands. (Which was not a singing group.) I will also see D, who was my boss and taught me the little bit I learned early on about structuring a longer piece of writing.

It could be, of course, that along the way, The One decided she did not like me. How could that be? I ask L. How could someone not like me? We are both baffled.
[Artist credit: Henry Wallis]

Can we quote you on that?

2011-01-30T21:22:00.002-06:00

Passing along an email from Maureen Alter Tiedeman:
I am the founder of Wings for Injured Athletes Inc. We are putting together a 365 daily calendar for 2012 called "Caring For Cancer one day At a time" with inspiring quotes from cancer patients and survivors.

I would like to recognize those individuals who have overcome adversity.

Would you know any individuals that would like to submit a quote?

I came up with the idea this November when my mother in law was diagnosed with Acute Lymphoblastic Leukemia and was told she only had 2 months to live unless she started chemo right away. So far she is having chemo in Fargo ND, being positive and is scheduled to go the Mayo Clinic in MN, February 9, 2011 to get a bone marrow transplant.
This is my way of giving back. A percentage of the proceeds will go towards cancer research.

Thank you for your time and I hope to hear from you

Wings for Injured Athletes is a 501 c3 organization.

To contribute a quote, go to
www.wingsforinjuredathletes.com
and click on "Cancer Care."

"Because Life's Too Short Not To Enjoy The Things You Love"

The problem that won't go away

2011-01-18T14:04:00.009-06:00

The New York Times today focuses on the difference between Stage 4 and other breast cancers, under an unfortunate headline: "A Pink-Ribbon Race, Years Long." Note to all: Editors, not reporters write the headlines.

The lead is about a woman with metastasis who went to a support group meeting and didn't have the heart to tell the rest of the women, who had stages 1-3, about herself. I was what scared them, the woman, Suzanne Hebert, said.

Let's look at the numbers: some 40,000 people in the US die of breast cancer a year. About a quarter of us who are first diagnosed with early-stage breast cancer end up with metastasis. About 150,000 are living with Stage 4.

The story quotes Dr. Eric P. Winer, director of the breast oncology center at the Dana-Farber Cancer Institute in Boston: All too often, when people think about breast cancer, they think about it as a problem, it’s solved, and you lead a long and normal life.

There was CJ, who was married to my old friend A. She was diagnosed in 2001, six years before I was, with about the same stage. She had a mastectomy, no need for chemo, her doctors said, and the family traveled and she continued working in an underfunded public school library on the East Coast, coaching the Reading Olympics team. Five years later the cancer came back. When I saw her a few years ago, she was getting treatment for cancer that had moved to her spine and brain. In spring 2009, she was losing her sight but still took the Reading Olympics kids to a competition. I didn't see her on a visit around then; I saw A when he drove me to the airport. One weekend in May 2009 she accused him of not turning on the lights. She went to school on Monday and realized that she really could not see and she quit. She died at home in August 2009.

I went to a funeral yesterday of an adult student who died suddenly at 46. She was an accomplished actor, playwright and teacher, and was in our MFA program to learn more about nonfiction writing. Last week she went home after our evening class, and she and her husband had some wine and were watching some trashy TV to relax. He got up to get more wine, and when he came back, his wife wasn't breathing. Her heart stopped before the paramedics got there. A lingering illness, he said, that would have been preferable. I think both are bad, I said. My friend S, who was close to the couple, said that at least with a lingering illness you can say goodbye, you can ask for advice. I don't know what A would say about that. Both ways have their down sides. I've long been against Death, but Death doesn't seem to care.
***
Image above is Pandora [Jane Morris] by Rossetti, which doesn't really fit, except in mood

Debbie Friedman/Arizona

2011-01-11T12:09:00.009-06:00

I've been listening to right-wing talk shows in order to see what the hosts and listeners are thinking about the Arizona murders. There was Savage Nation and a sub for Hugh Hewitt and then Michael Gallagher. L was listening with me last night and hooting because he said they sounded desperate. I don't think so. I heard:
-liberals want the race of a suspect made public only if it's a white male; they didn't want it known that the Fort Hood suspect was a Muslim
-liberals are trying to make a case that the suspect (my word: they assume he's guilty, as did NPR in a broadcast yesterday that assumed he was the killer; I mean we know he was but he's innocent before proven guilty) was influenced by the right, especially Palin, and all the political vitriol, and this was clearly a crazy man acting alone

The worst thing about these people is that they keep calling certain people leftists and Communists who I think are centrist. Their listeners will start to believe it.

In the middle of all this came Debbie Friedman's sudden death on Sunday. She was a Jewish folk singer but that's like saying that Bob Dylan was an American folk singer. She was more. She composed a healing prayer, Mi Shebeirach, which is quite lovely and I've enjoyed (if I can say that) singing it with others in mind at services, and knowing that people sang it for me when I had breast cancer. Friedman arranged the song and composed the music and I keep wanting to say revolutionized prayer but I'm sure that's an overstatement, and I'm not one to comment since I'm not a frequent attender. She was quoted in interviews as saying that services were so boring when she was growing up and she wanted to make prayer user friendly. She added grace, beauty and meaning. The cause of death is complications from pneumonia. It took a couple of days to establish her age at 59.
When I was studying in rabbinical school at the Jewish Theological Seminary in the late ’90s, it was not a very spiritual place, Rabbi Jason Miller of Michigan told the Jerusalem Post. He said that Friedman came to the Conservative (the centrist branch of Judaism) seminary in New York to lead a healing service at the end of a day-long conference.

Her energy electrified the Seminary’s synagogue where students, faculty and guests were singing and dancing – I remember thinking that if I could bottle up her ruah [spiritual energy] and sell it to congregations, I’d be a billionaire, Miller added.
Friedman’s music, Miller said, adds so much life and feeling to our liturgy.

Mi Shebeirach was performed Sunday at a healing service at Congregation Chaverim in Tucson, where Rep. Gabrielle Giffords is a member. More than 200 people packed the sanctuary.

Anxious? Depressed? Eat some fish.

2011-01-10T00:42:00.006-06:00

Why is this fish smiling?

As I've reported here* before, selective serotonin reuptake inhibitors (SSRIs) such as Prozac are now in our waterways and therefore in fish. A new report looks at brook trout in municipal wastewaters and finds that, lo and behold, the trout contained six antidepressants in their livers, brains and muscles.

There are no studies that I know of that tell you how much medicine you ingest when you eat the trout. Such things are hard to measure.

*I thought I had reported this before but I couldn't find any mention of it in this blog. The info is definitely in the book, though. One more reason to buy The Adventures of Cancer Bitch. Look in the end notes section.

A special thanks to D for telling me about these studies.

Elevator

2011-01-07T00:03:00.004-06:00

Today I was waiting for the elevator to take me up to the 21st floor at Fancy Hospital. That's the you're-in-big-trouble floor, where people in wheelchairs and wigs wait for their oncologists and hematologists. I had my tri-annual appointment with my hematologist to check on my polycythemia vera. I noted L waiting too. Her hair was about an inch long, if that. She said hi then asked me for my first name. Then asked me for my last name. Then said she had chemo brain and didn't remember how we knew each other. I told her I had chemo brain too and I explained. She'd just had a cataract removed yesterday and was going to another floor to check in with her eye doctor. Both of her eyes already looked fine. She said she had breast cancer that metastasized to her liver and that she gets chemo for. She said it had been 11 years, which I took to mean since the metastasis. And she's still going. She's a little foggy, yes, but looks pretty good for an 80-something-year-old with metastatic cancer.

On my floor there was an airline hostess going around picking up abandoned newspapers and magazines and asking people if they wanted coffee, tea or water. She had a badge on but I couldn't read it so I don't know if she was a volunteer or if this was her job, to placate people while they waited for doctors who allowed themselves to be overbooked. Everyone was pretty calm, though there were a lot of us there, maybe two dozen or more, sitting around.

My blood counts were pretty stable, so the hematologist wasn't too concerned. At one point she had talked to me about Interferon, which I definitely don't want to take. She reminded me that that was when the itching wasn't under control. But it is and I am so happy that it is. It's always the same old story, isn't it? The rancher who wore boots that hurt his feet and his friend asks him why he wears them then and the answer is that it feels so good when he takes them off. I get upset even talking about how awful the itching/burning was and I am so grateful and relieved that I don't have it anymore because of the phototherapy. Now I'm going to be going only twice a week. When I was a kid I could never imagine myself older than 30 or so, and I certainly didn't ever imagine that some day I would be 55 and standing on a towel to keep my feet from picking up psoriasis skin-crumbs, naked and inside a tank while purple light and heat surrounds me for five minutes and oh yes, I'm wearing an empty pillow case on my head so that the rays won't make my face red and freckly. No, while I was painting freckles on my face with an eyeliner brush I certainly did not imagine that. O brave new world.

Blood test for cancer?

2011-01-05T01:47:00.004-06:00

There's a new test that is so sensitive it can find one cancer cell in a billion. Veridex and Johnson & Johnson's Ortho Biotech Oncology unit will work on making the test more inexpensive. They'll start a research center at Massachusetts General Hospital. That hospital as well as Sloan-Kettering, University of Texas M.D. Anderson Cancer Center in Houston and Dana-Farber Cancer Institute in Boston will start using the test this year. If you could find out quickly, "this drug is working, stay on it," or "this drug is not working, try something else," that would be huge, Dr. Daniel Haber, chief of Mass General's cancer center and one of the test's inventors, told the Associated Press. It will take five years of testing before the procedure will be on the market.

It will be able to detect one cancer cell that's broken off from a tumor and wending its way through your bloodstream. And then what will it do?

Happy new year! Where's my brain?

2011-01-02T10:33:00.010-06:00

Happy new year to everyone. May this be a year of joy and health, meaning good health. Everyone has some kind of health, I guess, as long as you're alive. Which leads me to a couple of pieces that I've gotten in the mail and have been thinking about. First, a fund-raising letter from the Authors Guild. The Guild wants me remember it in my will. Enticements: There are some estate and income tax benefits, too, not to mention invitations to special events and special seating.... The great thing about this is, you don't have to pay until after you die.

I suppose the special seating is for before I die, not after, but you never know, since I'll be paying when I'm gone. The Guild intends for me to be a very active corpse.

But I won't be a corpse. I'm donating my organs, and the largest organ is skin, so I plan to be parceled out. If there are no uses for my bones, I may hang together as a skeleton.

Second piece in the mail: brochure from Rush University Medical Center, telling me that even if I do crossword puzzles or play chess in order to keep my brain sharp, I could still be screwed--and worse--in the end. A report in the journal Neurology indicates that if you have lesions from dementia, you can delay symptoms by stimulating your brain, but eventually, once you develop dementia, you're going to go downhill fast. [T]he benefit of delaying the initial signs of cognitive decline may come at a cost, study author Robert Wilson said in Discover Rush. On the other hand, he said, By compressing the course of dementia, mental activities could reduce the overall amount of time that a person may suffer from the condition. And that's a good thing. You'll be older and more decrepit, and closer to death.

If, like me, you're always worried about your brain, about seeing the word you need just up the road but not being able to reach it, about using the wrong word that sounds like the right one, about being disorganized and forgetful and always looking for the place your trains of thought went, and wondering what part of this is chemo brain and what is middle-age and what is menopause (brought on by chemo with enhanced symptoms thanks to Tamoxifen)--here's the Mini-Mental State Exam used to get a handle on a person's cognitive decline.

It was a relief to see that you don't have to count all the way backwards by sevens from 100 to 2, just to 65.

Top image from here

Children

2010-12-27T12:14:00.005-06:00

I was corresponding back and forth in the comments section of the Elizabeth Edwards post about selfishness, having children, not having children, going to enormous effort to have them. You could call me selfish for not having children. I was always afraid they'd have asthma, I was afraid I'd run out on them in a panic, that I would be selfish and not want to pay attention to them. I realized that I think strangers who've tried very hard (hormones, in vitro, etc.) are spoiled, but when my friends and family have taken this route, I'm very sympathetic. What does this mean except that I'm judgmental? Or maybe that I'm envious of celebrities who have been able to stop the clock, the way they've been successful in doing so much else. Both Wendy Wasserstein and Elizabeth Edwards had children late and both died of cancer. Connection? I don't know. I do know that both ovarian and breast cancer have been known as "the nun's disease." My sister has three children and has never had even a cancer scare. I don't have the BRCA gene, and I would bet neither does she. My mother has never had breast or ovarian cancer. She had two children and no more. Is there a part of me that wishes that I could have gone through all the body mechanics to have a child late in life? The truth is that I like options. I always want to feel that I could take up anything, marathon-running, or art or a new language, with my middle-aged chemo-addled brain and body. And you can always find role models. Take Grandma Moses, for example. I've always wanted to experience pregnancy and childbirth. When I come across an ad for a surrogate, I read it, and it takes me a second or two to realize that yes, though I am healthy (if you ignore the breast and blood cancer and asthma), I am not 35 years old any more.

Attention, bloggers

2010-12-27T11:57:00.002-06:00

More media queries, for current and former bloggers:
If you live and work in the Chicago area and used to blog,
but don't anymore, and want to be interviewed, please contact
Lisa Bertagnoli (www.chicagobusiness.com)
Email: query-uk5@helpareporter.com
Media Outlet: www.chicagobusiness.com
Deadline: 05:00 PM EST - 30 December
***
African-American Bloggers: How Did You Begin Blogging?
BlackWeblogAwards.com is looking for African-American bloggers to
share their stories of how they started blogging. How did you
begin blogging? Who (or what) influenced or inspired you? What
has blogging brought to your life? We want to know! All stories
will be fully attributed to you with links to your blog as well.
Photos are a plus.
Maurice Cherry (Black Weblog Awards)
query-cih@helpareporter.com
Deadline: 11:00 PM EST - 31 December

Do you have Stage 4 breast cancer?

2010-12-08T20:02:00.001-06:00

If so, and you're willing to talk to a New York Times reporter, read on:

Roni Rabin (New York Times)
Email: query-tc6@helpareporter.com

Deadline: 07:00 AM EST - 10 December

Query:

I want to interview women living with Stage 4 breast cancer to
talk about their experiences, quality of life, hopes and fears. I
would prefer women willing to use their real names.

Elizabeth Edwards

2010-12-07T19:09:00.006-06:00

What to say about Elizabeth Edwards? She tried to help others with cancer, and to raise funds for research. While her husband was running as John Kerry's running mate in 2004, she though she might have cancer, but didn't tell her husband John. She was diagnosed after the election, with stage 3. In 2007, it became stage 4, which means it appeared in other parts of her body, specifically, in her bones.
She died today at home, surrounded by family, including her ex-husband.
When she announced that her cancer had metastasized, I was annoyed with her for not speaking out about links between manmade chemicals and cancer. In fact, I wrote that I hated her. I conceded that I might have displaced my feelings about cancer itself onto her. I do wish she hadn't died and that she'd caught the tumor earlier. She reminds us that cancer is a serious, deadly disease. And that people find inspiration in those who try to do something about it.

The Adventures of Snow Bitch

2010-12-04T18:58:00.003-06:00

I made my second snow person ever today. I'll post a better picture tomorrow but for now, here she is.

The second day of Chanukah

2010-12-02T16:24:00.006-06:00

For those of you who are still eating Thanksgiving leftovers, it may come to you as a shock that Chanukah started last night. It's early this year. But as the joke goes (a weak joke), it's the same time every year on the Hebrew calendar, which is lunar, it's always the night of the 24th of Kislev. In some households, family members give eight gifts, one for each night of the holiday.
Wondering what to get your true love, especially if she's cancerous? And if your true love is an Ashkenazi Jew, as are 90 percent of the Jews in the US, she has a greater chance of being breast-cancerous than the non-Ashkenazim. I stole this idea from The Cancer Culture Chronicles. Go there to find other tacky items, listed under Pink Boob Award Nominees. Here is the Natural Contours Petite Breast Cancer Awareness Pink Ribbon Vibrator. Why do all these pink tchotchkes have long names, like M-&-M'S(R) Brand Milk Chocolate Candies Help Fight Breast Cancer?

A blog, a blog, why a blog?

2010-12-02T00:03:00.004-06:00

[Venus with a Mirror by Titian]

I just looked at this blog with my picture on it and thought, What in the world am I doing? Am I still running for junior high student council? (Alas, that was a sad story. My friend A helped me for about eight hours paint a very sophisticated campaign banner on brown paper, consisting of Doonesbury characters speaking favorably about my candidacy. We put it up on the cafeteria wall and then then someone tore it down. Who knows why? I think I ran because K was running and told me I should. I ran again in high school and won. And why did I do that? I had no big desire to change X or Y about the school.)

Last year my acquaintance S said, as I suppose many commentators have, that nowadays everyone is a hero to his own group of friends. We're all famous and important or want to be. Every single thing we do is important, especially the unimportant things, which we record on Facebook and Twitter. Why? Because we don't want to be insignificant. And we can't stand the idea that we're going to die. And be gone gone gone. And because it's so easy to write, I'm cleaning off my desk. I'm waiting in line. I'm inhaling. Exhaling.

On that note, I'm offering more of myself. Today I did a phone interview with KMSU in Mankato, Minnesota. To hear it, click here.

Cancers R Us

2010-11-16T23:47:00.006-06:00

In the Nov. 8 New Yorker Steven Shapin has an interesting review of “The Emperor of All Maladies: A Biography of Cancer” by Siddhartha Mukherjee. Among other things, Shapin notes: In chemotherapy, too, the lines between cruelty and cure have not always been obvious, nor have consciences always been untroubled.
Shapin also notes: The book also has little to say about prevention, aside from the campaign against tobacco, comparing the book to Robert Proctor’s “Cancer Wars” (1995)epidemiologist Devra Davis' in “The Secret History of the War on Cancer” (2007).

Light-headed

2010-11-15T23:35:00.006-06:00

Tonight at rowing practice (indoors) we were to row hard for one minute, then not as hard for one minute, for a total of 40 minutes. After 20 minutes I got a hot flash and felt enervated, which does happen after I've exercised a while. Then I get my energy back. This time it didn't come back and I felt light-headed and so I stopped, still sitting there on the erg (rowing machine) and moving my feet a little. I was sweating and weeping, weeping because that's what I do when I'm in physical distress. I was shaking and my heart seemed to be beating fast but when I timed it, it was slow. I couldn't get control of my breath. I wondered if I was having a heart attack, but thought probably not. Everyone else kept rowing and I wondered what would have happened if it really were a heart attack or if I had a stroke. Eventually, would they just step over me? The person next to me asked if I was OK and I shook my head. She asked if I wanted to lie down and I said no. Eventually the coaches noticed and got me some food. I had just eaten some bread and cheese at a cocktail party, so I don't think that lack of nourishment was the problem. And I hadn't had any alcohol. I was shaken up and people asked if I was OK and I would continue to shake my head. I was too upset to really talk. J is a nurse and said that the blood hadn't gone to my limbs. Or maybe she said the opposite, I don't know. The numbness in the hands seemed to be part of the whole about-to-faint scenario. S, one of the coaches, gave herself food-poisoning on Saturday and said she almost fainted Saturday night, and felt the same way. I've never fainted, though I wanted to for years and years because my sister R did.

I got a ride home with the lovely and kind S, and I decided to cancel a video taping tonight. It was at DePaul, for an anthology of nature poetry and essays. I don't know who was doing the taping. My essay is about being afraid of open spaces; fear of the nature is my theme and that essay has been my calling card in a couple of anthologies so far. I'm the anti-nature writer. I called G to get a phone number for C, the guy who was organizing the book and the taping. I left him a message and emailed him and then, unusual for me, didn't worry about it any more. It took me at least an hour to start breathing normally. I think my heart is still beating too deeply. If that can be said about a heart-beat.

I always weep when I scare myself with my physical state. Last week I was talking to a nurse at my phototherapy place (where I am zapped in order to alleviate the itching caused by polycythemia vera) who'd been gone on maternity leave. She said that she'd been in labor 29 hours and had to have a C section, but there wasn't enough time to put her under with general anesthesia, so she'd had local only, and could feel the pressure (and pain) of the doctors cutting her open, and could also feel them taking out her uterus and bladder. I almost cried, she said.

Almost??? If that didn't make her cry, what would?

Etiquette

2010-11-11T13:26:00.006-06:00

[Hitchens photo from Vanity Fair, by Jonas Fredwell Karlsson]

My friend S sent me the link to this post from D.G. Meyers, author of The Elephants Teach: Creative Writing Since 1880, and a person with stage four prostate cancer. He gives advice about what to say to someone with stage four, adding that saying anything is better than being out of touch. He writes: Then there were those who never even contacted me, including my own sister. Nothing quite makes you more aware of the nothingness that awaits you on the other side of Stage Four cancer.
His post begins, in turn, with quotes from Christopher Hitchens' piece in Vanity Fair about cancer etiquette. Here's the link to Miss Manners and the Big C by Hitchens.

Should we have names?

2010-11-05T01:05:00.004-05:00

I'm at a nonfiction writers' conference and all the buzz today was about a panel with David Shields that focused on his book, Reality Hunger: A Manifesto, which is a mixed tape of sorts between covers, made up of 618 pieces--about literature, memory, narrative, collage, conventional fiction, forgeries, plagiarism and originality, the flatness of novels, essays--more than half of them written by others than Shields. I'm on page 144 now, and here's part 435, where he's saying that he told his college girlfriend that he wanted a form with only epiphanies. And lo and behold, he's doing it now! I looked in the back and sure enough, the paragraph (#435) was not attributed, so that means it was thought up by Shields and he was the guy in college with the girlfriend. He was on two panels today and i went to the first one, along with about 150 other people who took up almost every seat in the house. It was a panel basically about his book,though there were four other people up there. Two of them read from his book. That seemed like the right idea, to bring out the thoughts and ideas and let them float about the room. The moderator said listening to the duo was exasperating, much like the feeling of reading the book. He wanted narrative. Shields says narrative is a forced form. The world doesn't make sense, so why do we fashion stories that are neat and tidy and full of sense? It's fake, he says. But the whole untidiness of life, I think, makes us yearn for an art that ties things up. At the same time, I don't like writing a regular, straight, linear story. It's not natural for me. And yet am I a hypocrite because I can keep track of a piece of writing better when it has a beginning, middle and end? In the summer after second grade I had the mumps and I read a joke book cover to cover. That is one epiphany after the other, if you can consider a punch line an epiphany.

People were up in arms about originality and attribution because in the galleys (which go to reviewers) the book had no attributions at all. Shield didn't want them, but his publisher's lawyers said he had to have them. The quotes are all Google-able, he said. And besides, his act of curating was an original, idiosyncratic act, and so he is the author. This was a question he'd been asked before. If there's a tyranny of the individual as he says, and we are too entrenched in the idea of the Author, then should he carry his argument further and say that no one's name should be attached to any creation? I asked this question, and I said that he is a revolutionary against capitalistic culture because we are so wedded to the idea of individuality. I imagined our libraries having card catalogs that list books by subject and title only, though of course there aren't physical card catalog drawers and cards any more, everything's on line. In recent Peanuts comic strips (or reprints that have appeared recently in the Tribune), there are a couple of new kids who don't have names but instead have numbers. I forgot the reason. In junior high health class, the teacher asked what we would do to make a stranger remember our names, and a girl named Kristy said she didn't care if someone remembered her name, and that was a revolutionary thought. She just wanted the person to remember her as a person.

Our names don't actually exist, do they? They are a construct. Just like a number is an abstract thing, a collection of sounds and a written symbol to stand for quantity.

I went to dinner with three very smart people, who I will panel with (a verb?) on Saturday and one of them, T, said, We are at the end of the age of reading.
T wrote a very smart review of Reality Hunger in Agni online, which you can read here.

I had volunteered to blog about the conference at www.triquarterly.org and tonight I spent about three hours on three paragraphs. It is as if different URLs are different rooms. I didn't know who I was in the TQO "room." I can be myself in my Cancer Bitch room. But both places are really no where. Just inside the computer, the way the tiny musicians would play songs from inside the radio, that summer when I had the mumps.

We are here at this conference in Iowa City because we are writers and we all want to make a name for ourselves. We want to be remembered. It is threatening, it is the abyss, it is chaos, to think of not attaching our names to our work. Our work being that which comes from our brains and is then shaped. Or we can sigh and let go and say, we will be immortal because we are made up of atoms, which are immortal, and our atoms keep joining the atmosphere so that we are part of everything on earth, so we can never really die, and all the work we create goes from us to the universe, and stays always hanging around the universe, going in and out of other people's brains, and that it is folly to attach a name to the thoughts that flow like that.

My friend K says it is a law in Iowa that parents can wait a whole year after a child's birth to give it a name.

Personal tragedy pay$

2010-11-01T11:23:00.004-05:00

I am often critical of Komen and once again I offer an apologia when I mention something good about it. The organization has a scholarship for young people who have suffered. If you meet these criteria you can apply for a $10,000/year scholarship to a state school. Applicants must meet all of the following criteria to be eligible for this scholarship:

* Must have lost a parent/guardian to breast cancer or be a breast cancer survivor diagnosed at 25 years or younger
* Must be a high school senior, college freshman, sophomore or junior
* Must plan to attend a state-supported college or university in the state where they permanently reside (students in Washington DC can attend state-supported schools in Maryland and Virginia)
* Must have a high school and/or college GPA of 2.8 on a 4.0 scale
* Must be no older than 25 years old by May 2011
* Must be a U.S. citizen, or documented permanent resident of the U.S. (or US Territory)
* Never at any time have been subject to any disciplinary action by any institution or entity, including, but not limited to, any educational or law enforcement agency
More info here. Deadline is Jan. 11.

50 million

2010-10-26T22:42:00.005-05:00

I just found out about this site. Some of us are lucky enough to be insured. According to a recent U.S. Census report, more than 50 million or 16.7 percentof our fellow residents are not. They might not be able to afford insurance, but hey, they can always buy the wristband, for $3.99. How can we call ourselves a civilized country and not have public health care for all?

Cancer Bitch in the news

2010-10-19T00:30:00.004-05:00

It's hard to complain about Pinktober (well--I want to complain about that neologism) when I'm one of the beneficiaries. The Trib picked five breast cancer memoirs to describe and listed The Adventures of Cancer Bitch first. So, get out there and buy cancer memoirs. If you don't, the [fill in the blank] will have won.

For people with Stage 4

2010-10-17T12:16:00.006-05:00

If you have Stage 4, consider taking part in this study.
The Cancer Support Community is conducting research to learn more about life after the Stage 4 diagnosis. TheCSC says: Your responses will lead to better programs and services to help you and women like you along the way. Please learn more and get involved. With one more, we know more. To start, click here.

Metastatic awareness day

2010-10-13T13:08:00.009-05:00

[Info on image here.

It's official. Today's the federally-designated day to be aware of breast cancer metastasis. You could argue that there are two kinds of cancer, the oh-it's-gone/it's-gonna-be-gone, and oh-it's-never-gonna-be-gone. Metastasis, of course, is the latter. Stage 4, out of four stages (not out of 10, as Brian Fies writes in the graphic memoir Mom's [Lung] Cancer. That's why Mom wasn't upset--at first--to hear that she was at Stage 4.)
For people with Stage 4, cancer is not a wake-up call that you can hang up on. It's a constant companion, the stalker that you can't keep out with an order of protection. It doesn't wake you up. It puts you to sleep, forever.

Stage 4 is what we all fear, and perhaps that nervousness feeds into the frantic pom-pon pinkness of breast cancer awareness and all the pink swag that's available.
"We are definitely out of the pink spotlight," Ellen Moskowitz, president of the Metastatic Breast Cancer Network, told Elaine Schattner of the Huff Post. "All the stories are about survivors, 'rah, rah,' who everyone applauds."

“I always wanted you to admire my fasting,” said the hunger artist [in Kafka's eponymous story]. “But we do admire it,” said the supervisor obligingly. “But you shouldn’t admire it,” said the hunger artist. “Well then, we don’t admire it,” said the supervisor, “but why shouldn’t we admire it?” “Because I had to fast. I can’t do anything else,” said the hunger artist. The analogy between those with "mets" and the hunger artist breaks down, so I won't pursue it further. But I think that we admire Stage 4s who get up and go, though it takes them, say, three hours to get out of bed and prepare for the day, which is filled with bone and other pain. But they do it because they can't do anything else. Except give up.

Eat your vegetables

2010-10-13T00:20:00.006-05:00

A new study shows that African-American women who ate more vegetables--especially broccoli, mustard and collard greens and cabbage--were less likely to develop double-negative breast cancer than African-American women who ate fewer vegetables. Carrots, too, were helpful.

African American women are more likely than white women to be diagnosed with estrogen receptor-negative tumors, which have a poorer prognosis than estrogen receptor-positive tumors, according to Science Daily.

The study was based on the Black Women's Health Study, which followed 59,000 African-American women, starting in 1985. Investigators from the Boston University School of Medicine reported: The incidence of ER-/PR- [estrogen-negative/progesterone-negative]breast cancer was 43 percent lower among women consuming at least two vegetables per day compared with women who ate fewer than four vegetables per week

Seen any good scars lately?

2010-10-07T23:11:00.004-05:00

[Catherine Money's photo of her mother, "Survivor," "One in Eight: Pasadena (CA) Portraits"]

Devon Williams had a mastectomy to remove her stage 2 breast cancer in 2006, and afterward noticed that she never saw images in the media of scars from breast-cancer surgery. "I had no images available to me," she told the San Gabriel Valley (Ca.) Tribune. "I had nothing on the Internet that gave me any comfort or inspiration. They were all frightening images, displays of diseased breasts."
She found women to photograph, found a photographer, and organized an exhibit of the photos, called "One in Eight," which is the chance that an American woman will develop breast cancer in her lifetime. The photos went on display in September in Pasadena, Ca. Williams hopes the exhibit will travel around the country.

Rowing on the radio

2010-10-01T11:46:00.005-05:00

[Rowing on the lovely Chicago River. WBEZ photo by Kyle Weaver]

Our Recovery on Water rowing team was featured on Chicago Public Radio today. Listen here.

The Trib wrote about us earlier this week.

[Tribune photo by Terrence James]

Seven hours in the cinema

2010-09-26T01:06:00.005-05:00

What question, Tony used to ask, is this the answer to?
I guess you're thinking, O, that's what they do on Jeopardy. But Tony was Anton Kaes, a Germanist at Berkeley, and this was a seminar for professors, and he would ask this about a film from the Weimar period, or advice in a German women's magazine, and we would turn our brains around to conjecture.
Today I went to the Siskel Film Center at 2:15 and left for home at nearly 11pm, with an hour break for dinner. I sat through the four parts of Hitler: A Film From Germany, and it appears that you can watch it for free here. Tony has written about the film, but I haven't read all of his interpretation and analysis. I don't know everything that I think about it. It will take time to absorb. But it seems that the question the movie is the answer to is: How do you explain what Hitler means to Germans in a way that doesn't use the expected tools: heavy voiceover, Treaty of Versailles, runaway inflation, salutes and soldiers, tanks, extermination camp images, etc.? How do you rouse the viewers out of the torpor of their expectation of the expected? By creating new images: by a young girl in a black cloak made shiny with film loops laid on it, and she is instructing an inert puppet or doll of King Ludwig. By elaborate, theatrical sets that look like they're made up of what was in the back rooms of an antique store. By repeating the speeches of Hitler and his henchmen, and repeating that we are Hitler and Hitler is Germany. By the image of a Hamlet holding a skull marked Jude. The film is a pastiche of radio broadcasts and surreal monologues by the Nazi puppets, by an actor speaking the memories of Hitler's valet as he walks in front of zoomed photos of Hitler's offices. His "project," as the academics would say, was to find Hitler's meaning in a soul-deep way, by using music and shadow and making stage-pictures to affix themselves in your brain. The movie came out in 1977 and I wonder if it would have changed me, how it would have changed me, if I'd seen it then. I spent my junior year abroad in Paris 1976-77, and I wonder if the film was showing in Paris while I was there, or if it was released later. (See video essay on the film here.) It was shown in the US, in Chicago. If I'd seen it new, would I have dismissed it, baffled and scornful, or would I have embraced it? Would it have broke open my deep melancholia, which was a result, first of all, of my temperament, and second, of my severe doubt that I would ever be able to have the life of a writer? Would it have wakened me to the possibilities of creating a personal interpretation of art and politics? Would it have shown me that I could do what I taught myself to do later--dig into the past and shape what I found there until it became one collage-story told in my voice? Would I have made a turn and sought out my destiny in political performance art? Would it, I'm wondering, have changed my life?

Using the cancer card

2010-09-24T00:25:00.011-05:00

I was riding my bike to the Belmont L and had stopped at the light at Belmont and Sheffield. I felt someone bump against my basket. Some guy who was maybe in his 40s with blondish hair and a t-shirt wearing a belligerent attitude. You're in the crosswalk, he said, rather heatedly. I was. I hadn't meant to be. And I hadn't expected people to walk across the street without looking. He was irate. I said, Peace on earth. He was already at the curb. What did you say? What did you say? Peace on earth, I said. Peace on earth? He walked back toward me. I've got plenty of peace. You shouldn't be stopped between these lines. See this line? You're stupid. Stupid! I thought he was going to slug me. I thought I was going to slug him. He went back to the curb. Peace on earth, I said. The light changed.

I was upset. I was mad. I thought later I should have used the cancer card: You rammed into my bike and I have blood cancer! But that seemed a stretch. That night I went to my desk at Smart U, a communal desk that I'd been squatting in for about three years, and the drawers were locked. There was a vase of flowers (kind of droopy but still bright pink) and a welcome note to someone other than Cancer Bitch, who was now occupying this space. Where was all my stuff? My assiduously collected pile of scratch paper, a few books I'd meant to bring home, originals for course packets. Beyond that, I felt displaced. Because--I had been displaced. Without a note or warning.

Later I went upstairs to the office of Smart U's magazine and there was the box of my precious stuff: a cloth bag, the papers, the hot pot I never use. Some ginseng tea. At least They hadn't thrown everything away.

Today I was on my way to Smart U and thinking about what I would say to the Paper-and-Stuff-Removal Guy: I've been around here instead of the other office for the last few months because I'm getting treatment around the corner three times a week for symptoms caused by blood cancer. Of incurable blood cancer! And why didn't you email me about moving me stuff? I have incurable blood cancer! Give me back my drawer!

I was getting so worked up about the incurable part. I had never put it that way before. I do have incurable blood cancer. Polycythemia is chronic. There's no cure. Therefore, not curable. I kept getting sadder and sadder. People have leukemia and they get over it. They're cured. They're in remission. It's gone. PV is never gone. There's the joke (dead serious) about advice to med students: Become an allergist. They never get better and they never die. Except people with PV die, die early, though lately the word is that we could have a near-normal life span. Just gotta watch out for clots. That move up from your legs into your lung or brain and then--

out like a candle.

For info on ordering an actual cancer charge card (pictured at top), click here.

Mysterious Blue Lights

2010-09-22T13:25:00.004-05:00

[Andrew Nelles photo}

Lately I noticed that some buildings in the Loop had blue lights on top and I couldn't figure out why. It couldn't be for Halloween, and I don't associate Columbus Day (Indigenous Peoples Day in Berkeley) with any color at all except maybe those of the Italian flag. Which aren't blue. After ROW practice on Monday, as we sat on the outside patio of the nearby Gem Bar (No Sam Adams, no Goose Island, we're not the North Side--said nicely) someone mentioned that the blue lights were actually were teal, for Ovarian Cancer Awareness Month, which is September. Then today's Trib had a piece on it. There's a fundraiser Friday night. Some of our rowers have ovarian, uterine and other cancers. Some have what's called "mets," which means their cancer has metastasized. And some still row. And some don't.

For those who need nipples...

2010-09-21T19:17:00.007-05:00

[reconstructed breasts, no nipples yet, photo from smartplasticsurgery.com]
Serena Lander reports that she will be back in Chicago Oct. 15 to work on tattooing nipples for women who have had breast reconstruction. She's also available for consultation.

Christopher Hitchens, still God-free

2010-09-20T15:36:00.003-05:00

[Christopher Hitchens, AP photo]
I'm dying, and so are you, Hitchens told his audience in Alabama. His esophageal cancer has metastasized, but still an atheist, and doesn't mind if people pray for him to get better. If it makes them feel better, it's fine with him. Read more here.

I would say just about the same things, except no one's asking me. I am sorry that he has cancer.

apres Yom Kippur

2010-09-19T00:33:00.005-05:00

So it is the next day, four hours after the nine-year-old at our break-fast blew the shofar to signal the end of the fast. I suppose we are all written in the book of life, since we (me, L, the people who were at the break-fast) haven't keeled over yet. How comforting it must be to really believe that whew, I get to live for sure for another year. No hits by lightning, no car crashes, no flower pots falling from window sills. (The college friend of my high school friend P lost a sister to a falling flower pot. A terrible and ridiculous way to die.) Who by fire... Etc. etc. And after you clean up after a party, it's like the end of The Cat in the Hat. There was once chaos and now it's all tidied up. That in itself is a miracle. All of us here in this room are going to die, said E, who I just met. I told her I didn't think about the people who used to live here. I don't think about their ghosts or what they went through in this house. Why not? Because I can't begin to imagine them. I don't even know their names. I would need something to go on.

The services I went to for Yom Kippur and Rosh Hashanah are informal, where you can wear whatever you want, and there were all kinds of combinations of white and white, because that's the color you're supposed to wear for the holidays. Last night I wondered hwo I would have reacted if there had been services like this when I was growing up. Would I have embraced the synagogue because everything was fun? Because I liked to dance and sing and play drums? Probably. But there was nothing like this in Houston. I learned Friday night that Yom Kippur is one fo the two most joyous days of the year. It is not supposed to be somber. It was a holiday of drifting. You'd drift in and out of the sanctuary, the room behind the sanctuary which was no longer separated by an accordian partition, glide into the bathroom, go back out to sit in chairs in the hallway to complain about being hungry, slip back into the sanctuary to whisper during the service. The place was too damned big to feel like your voice mattered during the songs. So now I go to the small place, and what if over time it becomes large, so large that it starts to feel institutional and impersonal? Then someone will branch off and start a new group and it will grow and so on and so forth.

Plant a garlic clove, said the rabbi Friday night. Plant a lot of them and in the spring you'll have garlic. Plant your soul and you will reap later. Or something along those lines.

[garlic plant]

Woman with stage 4 breast cancer says landlord unfair

2010-09-17T10:16:00.006-05:00

[Mary Ellen Hintz, photo by Brian Cassella, Chicago Tribune]

The Trib has shrunk physically--the pages became narrower some years ago--and it's much less hefty--what's so ingloriously called the news hole has shrunk down down down--but it is delivering cancer news two days in a row. Front page: A woman with stage 4 breast cancer was told she couldn't sign her lease herself. She had to have a co-signer or give her son power of attorney and let him do it. Or she could rent month to month. Her landlord said that there were staff reports she wasn't lucid, and he had a copy of a note from her doctor to her attorney saying she couldn't drive to contest a DUI charge because she's on narcotics. The DUI, she says, came from driving while using sleeping pills. Her landlord concluded that she couldn't understand the terms of the lease because of her medications.

The woman also admits that she pays the rent on the third week of the month, as per an agreement; two summer rent checks bounced but she now pays by mail order. Oh yeah, she also complained when her air conditioning broke down during the 90-plus degree days we had here.

The landlord raised her rent by more than $62.

What would you say? Was the landlord within his rights? Was he discriminating against her because she was obviously undergoing chemo and in late-stage cancer? Was he scared of having a cancer patient on his property? Was he, deep down, beyond monetary concerns, terrified she would die in her apartment? And if you're afraid, can you act accordingly? What were her legal rights?

The Tribune got the woman and landlord together and they agreed to a one-year lease with a rent hike of $62, which was smaller than his earlier stated hike. We're not told how much smaller. She signed in the presence of a witness who said she was of sound mind.

In this case, the newspaper came to the rescue. For everyone else, there's a national organization that provides legal help for people with cancer who have problems with insurance, jobs and housing. It's the Cancer Legal Resource Center, 866-THE-CIRC or 866-843-2572.

In today's Trib

2010-09-16T12:05:00.005-05:00

1. Mammograms may not reveal tumors in women under 50 because the tumors and dense breast tissue show up as the same color. Read Trib story here. Here is the study reported in the Journal of the National Cancer Institute.

2. A federal appeals court in St. Louis reinstated a lawsuit that accuses Costco, Safeway, Target, WalMart, WildOats and Aurora of claiming their milk was organic when it was not. For those of us who had estrogen-positive tumors, this matters, because bovine growth hormone can possibly feed new tumors. However, there's no test to determine if milk contains BGH. So you can put your trust in a label that declares there's no BGH. Or you can opt for organic milk, which means the cows have been grazing naturally and haven't had antibiotics (unless they were sick) or hormones. More here.

3. Hospice patients have a better quality of life than those who die at the hospital. That ain't news. What's somewhat interesting is that caregivers of patients who die in an ICU are at heightened risk for post-traumatic stress disorder. More here, where there's a link to the Dana-Farber study.

What is "the suburbs"?

2010-09-15T09:02:00.004-05:00

What is Detroit? sparked some comment on Facebook. Where did my vision of Detroit come from? Why do I get to have it and spread it?
The question, Whose Detroit is it? is also asking, Who gets to define anything? Who's in control of our myth-making?
To paraphrase A. J. Liebling, freedom of the press belongs to anyone who has a blogging account. In the last century, he couldn't imagine the multiplicity of voices. And if everybody is somebody, then nobody is anybody.
Which sort of brings us to one of the best short stories about the suburbs, which is really about class and generation. It's The Man Who Loved Levittown, the title story in W. D. Weatherall's collection. The narrator is reasonable, irrational, unreflective, angry and compelling, and you can understand why he does what he does.
***
O, and if you're looking for cancer? Scroll a little bit down.

Lke me, like me, like me

2010-09-14T11:07:00.002-05:00

O what is wrong with me? I heard that a longtime friend's daughter had moved to town and I want to invite her to come over to break the Yom Kippur fast and I keep thinking how I have to prove to her that we are cool, we are interesting, we are people worth knowing, even though we are her parents' ages. Even though kids today supposedly like to hang out with their Baby Boomer parents. I try to think about how I would have responded to such an invitation from an *old old stranger* when I was 24 or 25. I did have such an invitation when I was 29, from an old old family friend who was only about five years older, and she did seem older, more settled, with husband and house and kids and friends with same, though she was so very sweet and fun and irreverent. Such prejudices we have. Or maybe it's only me with such prejudices. And again I think of my cousin B, who died at 97, and gave me the pick of her jewelry (the only older relative with pierced ears!) and books, and who would go for walks with her neighbor who was in her 20s and from the Philippines, and would visit back and forth with her nieces and nephews. My 10-year-old step-step grandchild called on Sunday and said Happy Birthday, then, I mean Happy Grandparents' Day, and neither L nor I had had any idea that it was any such day. O, I say to myself, she just likes using her new cell phone.

What is Detroit?

2010-09-13T10:46:00.010-05:00

[Fisher Body Plant No. 21, Detroit, Sean Hemmerle, Time]

Yesterday's Trib had an op-ed by a mayoral wannabe from 1971. He began: Chicago is on the brink of becoming another Detroit. When I think of Detroit, I think of a dead, burnt city, burned by the riots so many years ago, dead from the near-end of car-manufacturing, and abandoned by whites of all classes and the black middle-class. Detroit is a spectre. Detroit is where you would not go for vacation. Detroit is where the empty lots are becoming gardens, though people are wary about poisons the factories might have leached into the ground. Mayor Daley I saved Chicago for the middle class, even though he rammed a highway through an Italian neighborhood and created a university, and did very little to spread the wealth or city services to people of color, unless they were part of the patronage system. His son made Chicago a jewel, a capital city on the New York and European model: shining for the tourists, shifting the underclass further and further away from the main drags. This mayor Daley pushed gun control, but he was not able to control gang violence. In the meantime, like other Rustbelt cities, Chicago lost manufacturing; thus the rise of the residential loft, where residents now sit on their living room sofas in buildings that once were home to factories and warehouses. The U.S. is a service-sector economy, much of its manufacturing (and customer service, as anyone who's called a computer helpline or Hotels.com finds out) sent overseas, where poor people are grateful to work for less money, under worse conditions, and seldom is heard the word union.

All this is evident. To me, to many people. Apparently not to Richard E. Friedman, who wrote the op-ed, and ran as a Republican against Mayor Daley II in 1971, and has never ceased licking his wounds.

Is this racial politics? I asked L when I read the piece. Is he trying to warn the aging white readers of the Tribune that they need to support a Republican or else our fair city will turn into a Detroit--an impoverished city, a city that does not work, a black city?

Mebbe, said L, who hadn't gone beyond the first sentence of the piece because, he said, someone had taken the section for herself.

Steppenwolf Theatre has been thinking about Detroit, and apparently to Steppenwolf, Detroit means an inner-ring suburb of any medium-sized city, a suburb created by white flight (though that's not mentioned), where houses are starting to fall apart, along with the American Dream. I saw the very first preview of the premiere of the show Detroit, written by Lisa D'Amour. Steppenwolf commissioned the play. In the program, which I've uncharacteristically already recycled, we're told that the highways mentioned are just outside Detroit, but the back yards we see meticulously recreated, the white suburban angst we see so absolutely well-performed, could really be anywhere.

If so, then why call it Detroit? I want to condemn the playwright and Steppenwolf for making Detroit a metaphor because it is a not a metaphor. It is a place of suffering and hope and chronic unemployment. It is a black city. It is not a white suburb. Am I being unfair to the playwright and the theater, because my Detroit is not their Detroit?

[Laurie Metcalf in Steppenwolf's Detroit, where everything is personal, even fire-setting]

And there are other Detroits:

[The Heidelberg Project, using art to revitalize the city]

Elevated

2010-09-11T14:08:00.009-05:00

I was in the elevator at the Fancy Hospital Medical Building after my phototherapy session, which has really helped alleviate the itching/burning of my skin caused by my polycythemia vera. A guy, sort of pale, dark hair I think pulled back, maybe 30s, hunched over a little, black t-shirt, was talking to a woman about how he had to quit skating because of blood clots. He got off at the second floor. He didn't look tough enough and scarred enough for hockey. I asked her if he had polycythemia vera, and she said it sounded like that, but not quite, and I guessed, Essential thrombocythemia? and she said yes, that he'd had his spleen removed a few months ago, and that he had been a professional skateboarder. My hematologist pats down my spleen at every office visit, because it can become enlarged, but it's always OK. I had essential thrombocythemia first, and it does often lead to PV. ET didn't seem like anything. I just had too many platelets, and eventually got some prophylactic phlebotomies for it (or was it for PV only? I don't remember), and my skin itched after taking a shower. It seemed like a sleeper disease, a disease that isn't there. I know a kid (30s) who has it who doesn't want anyone to know and I was was astounded to learn that he wanted to keep it quiet. I know that when I'm on a plane I'm supposed to do isometrics so the blood won't pool into clots, and the hematologist and her assistant have schooled me in the symptoms of a blood clot (a piece of pain starting in the legs; but the sudden appearance of two identical bumps on each ankle, for example, has nothing to do with blood clots; that's something I knew but it panicked me anyway the day that they appeared and I called the physician's assistant who of course said it must be mosquito bites, but they weren't bites, I knew that), but I think I'm self-aggrandizing when I call my disorder cancer, even though it is cancer. To get info on it from the government you go to the National Cancer Institute, but the Mayo brothers think of it more of a disorder than a cancer.

Along the same train of thought though it seems not to be: I had to start up with the periodontists again because I had a tooth implant that failed. It was loose in my mouth. It's a father-son business, and the son had done the work. When I went back I asked to confer with the father to see if he could supply a reason for the implant failure. He looked at my chart and asked me if I still had cancer, and I said, Not breast cancer, but I have blood cancer and take oral chemo. He asked what I had and then told me that it wasn't cancer. I felt devalued, as if he were saying that I was faking it. I was emailing someone who also has it and was telling her that I want it to be considered cancer, and she asked me why it mattered. I don't know exactly. It has something to do with the shiny burden that cancer is. Cancer is deadly, cancer is scary, cancer is what everything can give you, cancer is the end of times, it's dramatic, and if you have cancer then you are special. I have beat/beat/beat/drumroll, c-a-n-c-e-r. Conversation stopping, jaw-dropping, cabosh-putting-on, oh-my-god-how-wonderful-you-are-to-go-on (I can't go on, I must go on, I go on) cancer. The domestic and industrial beast. The dragon. The disease that makes you a martyr.

To continue with the digression on the pere-iodontist, or periodondist pere: He looked at my list of medicines and said, O of course your chemo lowered your resistance and you had bacteria so that's why the implant failed. Couldn't be because of some failure by periodondist fils. I happened to go to the hematologist a few days later, who showed me my white cell and neutrafill counts, which were clearly inside of normal, because it's chemo but not that kind of chemo, so where's the excuse now, pere doctor?

I was thinking of turning this blog into the laments of the continuous patient, but I don't want to be that person, it's just that I'm going to the doctor or medical building all the time, for medical and quasi-medical appointments, that I'm presenting my case to alleged healers and those who administer healing, so it does seem to be a focus but it can't be the main focus, unless it's interesting enough to write another book about. Which it doesn't seem to be.

Have you made a big change?

2010-08-20T20:07:00.002-05:00

O, how they want us to have had epiphanies, shifts, turnabouts, makeovers, changeovers and on and on. If you happen to be one of the people who have (has? I never remember) made a big change because of breast cancer, and you'd like to be interviewed, read on:

Breast Cancer survivors

Category: General

Email: query-j5b@helpareporter.com

Media Outlet: Book

Deadline: 07:00 PM EST - 24 August

Query:

I am a cookbook author and nationally-published essayist writing
a novel centered on themes of rebuilding life after breast
cancer, I am interested interviewing breast-cancer survivors who
were inspired to make a major life change (new career, move,
etc.) because of beating their disease. Would be most interested
in speaking with people of South Asian descent. Acknowledgment
given to interviewees in published book.

The Big C How Pretty Cancer Is

2010-08-16T22:24:00.008-05:00

God help us! I just watched Showtime's The Big C online while sitting in my bed and breakfast room on State Street in downtown Jackson, Mississippi. It's funny. It's ironic. It's sardonic. It's clever. It's cute.

It's unrealistic. It's demeaning. It delivers a very very odd message about race.

It begins with a black guy from the swimming pool company talking to the blonde (Laura Linney) about how unrealistic a pool is for her yard. We are in Minneapolis but we could be anywhere where there are driveways and shrubs and lawns and single-family dwellings that one can afford to expand. He says instead she should "bump out the deck," put in a hot tub and and barbecue pit. To get it done faster, she offers to pay him double. OK, I'll start tomorrow, he says. (Later she decides she does want the pool no matter what, and he says he'll get a digger tomorrow. "The bigger the digger the better," she quips. Ugh. Insert joke here about black men and their big diggers.)

It ends with Linney talking to someone who's off-camera: therapist? husband? No, ha ha. It's a dog. I think it's the neighbor's basset hound. And it's unclear whether he's listening. Then as the camera goes further and further away, we see them on the couch together, isolated as if in a boat, and then the FUCKING CIVIL RIGHTS ANTHEM, "This Little Light of Mine" plays.

What is going on here?

Race relations are un-problematized. Cancer is de-clawed. She might as well start singing, I Feel Pretty. She sure looks pretty. Healthy.

But Cancer Bitch, didn't you say you feel fine till the treatment starts?

In between we have Linney telling her handsome young Indian-looking doc (he's 31, she's his first terminal patient, lotta yucks about being the first) all about her swimming games as a kid while she's in the exam room, and then they meet for a meal. Maybe this is how they do medicine in Minnesota, but ain't never seen nothin' like that in Chicago, and, like Linney's character, I too have health insurance.

This seems to be a fantasy about what happens when you say what you've been swallowing all this time. She tells her fat, mouthy black student: "You can't be fat and mean." Linney tells the girl that the other kids laugh at her cruel jokes, but nobody's asking her to the prom. And at their next encounter, Linney offers the girl $100 for every pound she loses as long as she quits smoking. Seems like we're getting pretty close to the territory of Blame the Victim for Her Cancer--she was repressed, so see what happened!

She finds out her neighbor has complained about the backyard construction so walks straight into the old biddy's house and accuses, "You have never smiled even a little bit." And the old lady's house and lawn are a mess, too.

Of course, because this is TV-land, next time we see them the neighbor has upswept her hair, cross the street to shake hands, and smiles and asks to borrow the lawnmower.

And because this is TV, and because everything is so funny haha, her husband hears her doctor's compassionate message on the phone and assumes she's having an affair. She doesn't tell anyone--her son, her husband, her save-the-world goofy brother--that she's got metastatic cancer.

"It makes me feel better to think we're all dying," she says (to the dog). Profound. Never thought of that before. I'm here all year, she says. Performing at stage four. (That was a clever line. Really.) "The laughter might turn into a sob in a second." And it does.

So next episode, we'll be wondering, Will she tell or won't she? Will she mention money? Will cancer be anything more than a giant wake-up call? And at the end, will she be able to best Oscar Wilde's final line: "My wallpaper and I are fighting a duel to the death. One or the other of us has to go"?

And what is it about Hollywood and house expansion? That disappointing movie with Meryl Streep in it centered around the Steve Martin architect character who came into her life to expand her house. After her second and last kid left for college. Isn't that a sign that it's time to downsize?

Note to Hollywood: Can you spell F-o-r-e-c-l-o-s-u-r-e?

***
Hey, kids, here's someone who died from breast cancer, as well as other stuff!

One-Breasted Tour Through Dixie

2010-08-15T21:07:00.005-05:00

I am so sad because I'm leaving the South on Tuesday. I'm in Selma tonight, having spent the afternoon in the Reform temple with a very nice and spry president of the congregation who is 85. He is 10 percent of the congregation, and ten years younger than the oldest member. He put captions on two recent pictures. On the group standing together: The last of the Mohicans. On a photo of the members sitting around on the pews in the nearly-empty sanctuary: Reserve seating at Mishkan Israel.

The synagogue was started by German Jews; my great-grandfather and his brothers-in-law were fresh-from-the-shtetl Eastern European Jews who were presumably members of the Orthodox synagogue, which no longer has members or a building. It's now the site of the post office. Most of the documents and photos at Mishkan Israel pertain to that synagogue, but I saw a copy of minutes from 1912 from B'nai Abraham, the Orthodox shul. It was in Yiddish, which I should know how to read after ten years of study, but I know I'll have to get it translated.

What I know: My great-grandfather Zendel aka Sidney was born in Plungian, Lithuania, in 1874. He arrived in the U.S. in 1901. His wife Sarah, who was four years older (they allegedly told the census enumerator Miss Lula Hamilton, who got some names wrong; maybe she was better with figures), arrived in 1906 with five kids. This was typical for immigrants, of course. Imagine coming over on the boat with children aged four, five, seven and nine (the latter, my grandmother, Bessie aka Bayle Maryassa) Mindel. Imagine living in the shtetl Pusvatyn (better or worse than Plungian?), your husband has left for America, he says he'll send for you but you never know, you've heard of women who go overseas and they find their husbands are living with a real American woman who speaks English, the men abandon their faithful wives and don't release them with a religious divorce and they are isolated and floating and alone, with their children and Yiddish and nothing else in the new country. He goes and you're pregnant and have the fourth baby, which he doesn't see grow into a toddler and then a little girl. But he does send money for passage and you come, five years later, to 517 Washington Street in Selma. And two years later, an American baby is born. And 103 years later, Bessie's granddaughter aka Cancer Bitch makes a visit and there's a gas station where one house was, and probably an empty lot where the other was, and anyone can see them from their computer, thanks to the Google satellite system, the big eye that sees and records everything.

Why Selma? Why Alabama? It's always the same reason: someone else was already there. In this case, Sarah's brothers Louis, Joe and Samuel Rosenburg nee Pruchna. Samuel came to the U.S. in 1892. Today I put stones on the graves of Louis and Joe and Louis's wife Mattie Smith. The graves were in a row and there was space for another head stone, for Joe's wife, but she wasn't buried there. I don't know where Samuel and his wife Jennie are. I do know that they married in 1910, when he was 38, five-foot-six and 200 pounds, and she was 28, the same height and weighed 150, and had been in this country five years.

What does this mean? Why is genealogy the alleged second-most popular hobby in the US?
The one-breasted researcher has thoughts on this, which she will relate later.,

Type 2014A...

2010-08-03T11:14:00.016-05:00

in the folktale roster is the "That's good, that's bad" formula story. I found out that it did not originate with my cousin H, who used to tell these stories in the 60s. Or maybe it was just the one classic story about the man and his new wife.

Here goes my attempt, not adhering exactly to the formula:
I had breast cancer.
That's bad.
That's good, I don't have it any more.
That's good.
That's bad. I have another kind of cancer, polycythemia vera.
That's bad.
That's good, it's slow-growing and sort of under control.
That's good.
That's bad, it makes my skin very sensitive, and it itches a lot. But because of my breast cancer, I joined a rowing team for breast cancer survivors and pre-vivors.
That's good.
That's bad, I rubbed my leg against the gunwale and got "slide bite."
That's bad.
That's not bad, I put antibiotic ointment and a bandage on it.
That's good.
That's bad, I ran out of bandages when we were in Oregon.
That's bad.
That's good, L got me some more bandages at Walgreens.
That's good.
That's bad, I reacted to the bandages with huge red welts.
That's bad.
That's good, it didn't kill me.
That's good.
That's bad, we were in a tiny town and couldn't find calamine lotion, cortisone cream or antibiotic ointment.
That's bad.
That's good, we got Campho-Phenique and I read online that toothpaste helps the itching.
That's good.
That's bad, when I got home half the welts were still there, and red and puffy.
That's bad.
That's good, I went to the doctor.
That's good.
That's bad, he said it could be staph or MRSA.
That's bad.
That's good, he prescribed Mupirocin ointment and asked if I wanted an oral antibiotic or if I wanted to wait.
That's good.
That's bad, the bumps are still red.
That's bad.
That's good, they're smaller.
That's good.
That's bad, I'm leaving town and don't know if I should ask for the pills.
That's bad.
That's good. I have the option. I have health insurance. I'm actually healthy, overall. Despite all. Sorry this isn't very funny, though.
That's bad.

[Photos from Mayo Clinic; mine started out like the one on the left, but are not as bad as the one on the right.]

Leah Siegel

2010-08-01T15:06:00.002-05:00

I usually don't have two deaths in a row, but this was just published today, and sent to me by a good friend of Leah's. She was diagnosed with Stage 4 breast cancer right after she had her third child. This piece even cut into the stony old heart of Cancer Bitch.

But I date myself...

2010-07-27T17:33:00.003-05:00

The clock radio went off this morning and soon a notice came on about an upcoming special on the life of Daniel Schorr, who died last week at 93. I'd promised myself I would write four pages when I got up so I rushed to my office across the hall, and used a staple-puller to open up a cassette tape. I was about to put it in the boom box to record the special when I realized: I can listen to this online later.

What century was I still living in?

My only excuse is that I'd just woken up.

I did get bits of the special, which is worth listening to. Find the link here to Dan Schorr Memorial Special. I would love to live as long and work as long and be as productive and honorable and wise as Schorr.

The drug you can never quit

2010-07-26T23:20:00.005-05:00

My dear friend D read about my nausea when I ran out of Effexor, and sent me this helpful link to Crazy Meds. CM lists: Effexor's Cons: For many people Effexor XR has the absolute worst discontinuation syndrome of an antidepressant. Effexor (venlafaxine hydrochloride) is a medication people utterly loathe to have taken. It is not uncommon for someone to fire doctors during or immediately after they quit taking Effexor XR(venlafaxine hydrochloride).

I'm trying to remember why I switched from Cymbalta. Oh, well helpful Crazy Meds is reassuring on this point: It appears as if the discontinuation syndrome for Cymbalta (duloxetine hydrochloride) is just as harsh as that of Effexor (venlafaxine) for many people. In case you're wondering what Cymbalta is for, Crazy Meds tells you that, too, in technical language: Major Depressive Disorder (i.e. feeling depressed.as.fuck or like Whale Shit at the Bottom of the Ocean) - approved 4 August, 2004.
Diabetic Peripheral Neuropathic Pain - approved 7 September 2004.

And if you happen to type the URL incorrectly, you get this very technical notice: The file you were looking for is just an illusion created by the devil.

As are most things.

Cooling from a meltdown

2010-07-26T10:55:00.012-05:00

[or heating up together]

Meltdown is the topic of a blog carnival sponsored by Chronic Babe, so if you go there after July 27, you'll have access to lots of cooldown tips.

For Cancer Bitch, a meltdown means feeling hopeless and helpless, out of control. It's easy to feel out of control when your body has started acting badly, and when professionals are delineating the ways your body is doing that bad thing to you, using words you've never heard before, and offering treatment that might be painful, expensive, confusing, inconvenient, lonely, messy, experimental and/or detrimental to your health in the long run.

What I've found to work well: Cry. Talk. Write. Find something cool and soothing to eat, such as frozen yogurt. And yes, make sure that the milk used does not have bovine growth hormones. Cry a little more because: you live in a world where we give hormones to cows, you have to be vigilant in order to get dairy without the hormones, in Europe it's banned, and the hormones may be linked to estrogen-positive breast cancer, and extrapolating, what else in our food, water and air supply is detrimental to the health of the planet?

Then link up with an organization that works on these issues, because they don't feel hopeless. Acknowledge that that's hard, especially if you're feeling faint, are in pain, and have been handed a death sentence.

[What would Mother Jones do?]

Mother Jones (the person who inspired the founders of the magazine) was born Mary Harris in Ireland in 1837, and immigrated to Canada and then the US. In 1867 her husband and four children died of yellow fever in Memphis. She moved to Chicago, where her home and dressmaking shop burned in the Chicago Fire.

By her 50s she was a radical, working mostly with mineworkers. In 1903 she led a children's march fom Pennsylvania to New York to protest child labor. She helped found the Industrial Workers of the World (IWW, the "Wobblies").

She's buried in Downstate Illinois.

If you're able, after your meltdown, you might want to heat up, as the IWW says, and help fan the flames of discontent.
Check out the research/activist groups such as: Breast Cancer Action; Collaborative on Health and the Environment; Our Bodies, Our Blog; Organic Consumers Assn. Feel free to list your recommended organizations and meltdown tips in Comments.

[Order your IWW songbook for Labor Day. Disclaimer: Cancer Bitch does not endorse all stands/actions taken by IWW.]

Don't mourn...organize!--Joe Hill

Surprise, surprise

2010-07-25T23:55:00.006-05:00

[Smile when you smash that breast!]

OK, I have to admit that I'm late with this news. I found it as I was filing away a page from the Tribune about what your greenest options are re: shopping bags, diapers, coffee holders and the like. So this news is late, and it states the obvious. But it's always nice to have your world view or Weltanschauung validated, as long as you can forget that these are real people involved who are suffering. Oh, but we shouldn't forget.

The Centers for Disease Control and Prevention released stats July 6 on breast and colon cancer screenings among people age 50-75--or middle age, according to my calculations. Among the findings:
-People with health insurance were more likely to get screened than those without.
-Minorities were less likely to have screenings. American Indian and Alaska Native women were least likely to get mammograms.
-Women with less than a high school education and women who were low income were less likely than others to get mammograms.

Interestingly, the Tribune gave the story seven lines and two charts, accentuating the positive: Screenings rise for 2 cancers. It's odd, though: I couldn't find the original story, which was from Reuters, online. I found a longer AP story on the Trib's web site. That one mentioned the variables of education and insurance, but not race. It emphasized that more people are getting tested for colon cancer, but the same percentage of women were getting mammograms in 2008 as they did in 2002. The New York Times ran a piece the next week based on a CDC update, emphasizing the negative: Gaps Found in Breast Cancer Testing, noting that equal rates of black and white women were getting mammograms, though fewer Native Americans. The Times did not mention income disparity .

This all goes along with my theory that if everyone were rich, we'd be much better off. Rich people are thinner and healthier and usually more educated. Our obesity problem would decline and we'd all fit into our airplane seats.

Magic mushrooms & no magic bullet for patient communication

2010-07-24T14:42:00.017-05:00

Johns Hopkins tells us that researchers are looking at illegal drugs to help people with OCD (obsessive-compulsive disorder), PTSD (post-traumatic stress disorder), anxiety and depression--anxiety being Cancer Bitch's major bugbear. MDMA aka Ecstacy, says Johns Hopkins health reports, also increases brain levels of oxytocin, which arouses feelings of trust and confidence that can be particularly helpful during psychotherapy. The idea is that a dose of the drug, taken before a talk therapy session, may help individuals with PTSD reduce their fear and anxiety long enough to discuss and process the events that traumatized them. Ketamine aka Special K, is an FDA-approved general anesthetic that is being studied as a fast-acting antidepressant. Ketamine binds to receptors in the brain and blocks the neurotransmitter glutamate that normally activates neurons, thus producing a calming effect.

I haven't tried any of the above, though in high school, the guys in Future Farmers of America were allegedly growing the mushrooms on their school farm. It was the '70s, after all.

You can participate in clinical trials of these drugs (or a placebo)if you meet the criteria. For example, New York University is administering one dose of psilocybin to anxious people with life threatening, advanced, or recurrent cancer. If you're in Baltimore, check a study out here.

University of Rochester is studying whether topical amitriptyline and ketamine cream are effective in treating neuropathy caused by chemo.

There are tons of clinical trials and they can save or at least improve lives, even your own. For example, in researchers in Downstate Illinois are studying how best to get breast cancer survivors to exercise. There's another one on whether flaxseed is helpful in combatting hot flashes. My favorite is one at Fancy Hospital on communication with patients. A major goal: •Determine patients' health communication needs during the first 6 months of care by interviewing patients with breast cancer (as well as their families, caregivers, and healthcare teams) and observing interactions between patients and oncologists throughout the trajectory of care from initial diagnosis through the initial treatment course.

This involves video and extensive interviews. What should also be done:

* HIRE ENOUGH ONCOLOGISTS & STAFF SO THAT THE WAIT TIME IS NOT TWO HOURS FOR CHEMO OR ONCOLOGY APPOINTMENTS.

* REQUIRE DOCTORS TO READ PATIENTS' CHARTS BEFORE ENTERING THE EXAMINATION ROOM.

* REQUIRE DOCTORS TO SIT DOWN DURING PATIENT APPOINTMENTS.

* TRAIN DOCTORS (STARTING WITH MEDICAL STUDENTS) WITH EXTENSIVE ROLE-PLAYING EXERCISES.

* INVITE JEROME GROOPMAN TO TALK TO ALL STAFF ABOUT COMMUNICATION WITH PATIENTS AND FOLLOW WITH SMALL MIXED (SEE POINT BELOW ABOUT MIXING STAFF) DISCUSSION GROUPS ON RELATING AND COMMUNICATING WITH PATIENTS.

* CONTINUE ATTEMPTS TO LOCATE/ENCOURAGE HUMANITY IN DOCTORS AND TO BREAK DOWN THE HOSPITAL HIERARCHY (BASED ON RANK, EDUCATION, CLASS AND MOST OF ALL RACE) BY HOLDING WRITING WORKSHOPS, BOOK AND OTHER DISCUSSION GROUPS, IMPROV & EXERCISE CLASSES AND OTHER ACTIVITIES THAT INCLUDE EVERYONE, FROM IMPORTANT & SELF-IMPORTANT DOCTORS TO CLERICAL STAFF.

* HIRE HOSPITAL CLOWNS TO EASE TENSION & BRAINSTORM WITH THEM ABOUT IDEAS TO EASE ANXIETY AND COMMUNICATION. IT'S HARD TO LISTEN WELL WHEN YOU'RE TENSE.

To search for clinical trials, go here.

More confusion but you'd think there wouldn't be

2010-07-22T22:46:00.010-05:00

[by the immortal Posada]

I've been getting mammograms every six months for the remaining breast. Today I went again, and the procedure is that after the mammogram, you're led to the radiology lair and sit in the radiologist's office and talk to her. The radiologist I saw today was seemed to be in her 30s and spoke without pretense. She was happy because the images showed that the (micro)calcifications, which are tiny specks of calcium that could indicate cancer but probably don't, have looked the same in all the mammograms in the past few years. So that means that nothing has changed. OK, it means that probably nothing has changed because you can't see every little thing that's going on.

I've had calcifications for a while--for years, in fact, before I was diagnosed. So I asked her if she could look at the calcifications in my cancer mammograms and compare them to the pre-cancer mammograms. My idea was that she could say, Aha, these calcifications from 2005 developed into the cancer of 2006/7, you can see that in retrospect. And then that would shed light on the specks of July 2010.

So she went through the images and arranged them on her light board and looked through her magic binoculars to see them better and said you couldn't learn anything from the comparison.It seems that the calcifications appeared next to the tumors (or masses, as they say in the biz) but did not turn into them. She also said she had other customers waiting and indicated the folders on her desk. OK, she said patients, not customers.

She told me if I was really worried that I could have a biopsy but it wasn't necessary or that I could come in for a mammogram in six months instead of a year.

I had asked her to do this extra digging because I had this idea of calcium specks as little seeds that could turn into cancer, but that seems to be wrong. Dr. Susan Love tells us: Microcalcifications, as we call these specks, are usually the result of normal wear and tear on your breasts, but 20 percent of the time they're an indication of cancer or of the precancer ductal carcinoma in situ (DCIS). If the film shows only a few very tiny specks arranged in tight clusters, then it's more likely to be something wrong that can fit into the tiny ducts. If the specks are scattered and larger in size, they're more likely to be benign and harmless.

The California Pacific Medical Center tells us: "Benign" calcifications in the breast do not become malignant. Malignant calcifications are malignant from the time they first appear. When the radiologist assigns calcifications to a "probably benign" category, the risk of malignancy is considered to be less than 2%.

My specks are scattered and the radiologist didn't seem bothered by them. She gave me a piece of paper showing the mammogram results as "benign appearing (not malignant) stable." The surgeon smiled at the results when she popped in (standing the whole time). In all everyone seemed happy and cheery with the mammograms, just stopping short of congratulating me on the films' unchanged nature, the way they did when we found out that the cancer hadn't crept up into my lymph nodes.

Aw shucks, it was nothing.

Still, nobody knows anything for sure sure, and though the physician's assistant said it was great that the cancer hadn't come back after 3.5 years, when I asked him about estrogen-sensitive tumors like I had, he said that they're usually slow-growing and are more likely to come back after 15 or 20 years than right away. I was thinking of CJ, who died last summer after having had a mastectomy and no chemo. She said that she thought she should have had chemo. She did have some good years, I think about eight, and then a couple of bad ones at the end, with the cancer growing in her brain and bones. She was working as long as she could, as a school librarian, even when she was nearly blind.

It's fine to laugh at this stage 2-a breast cancer, just garden variety, no big deal, I didn't need that breast anyway, and to read about someone with stage four whose bones were cracking at the end of her book (The Red Devil) and then to find out, hey, she just wrote a book about spending a year in India, but the cancer--even though we say its name now, not just Big C, or that someone's Sick, or Very Sick--it is a death sentence, for some people, some of the time, we just don't have all the particulars in advance.

Can cleaning products cause breast cancer?

2010-07-20T22:20:00.006-05:00

Yes, maybe, sort of. Could be--according to a study just published in Environmental Health.

Researchers conducted phone interviews in 1999 and 2000 with 787 women who were diagnosed with breast cancer between 1988 and 1995. They also interviewed 721 women in a control group. The interviewers asked about the women's use of cleaning products and pesticides, about their beliefs in the causes of their cancer and about family history. They found that women with breast cancer were twice as likely than the control group to have used air freshener and to have been exposed to more cleaning products.

However, the scientists cautioned, all the information came from women recalling their use of cleaning products, and could be biased. The study found no link between pesticide use and breast cancer.

Here's a link to the abstract, which will in turn lead to the whole study, which was submitted in 2010.

So, should the study have been done, considering that all the information relied on women's memories?

In the meantime, using simple products is better for the environment. But alas, when we buy the hippie-recycled-feel-good products, we find they don't work as well as the strong-smelling stuff with ammonia and bleach.

[Elbow grease works best.]

2010-07-20T01:09:00.005-05:00

[NYT photo; patient claims surgery was unnecessary]

The New York Times tells us that that 17 percent of D.C.I.S. cases identified by a commonly used needle biopsy may be misdiagnosed. D.C.I.S. is ductal carcinoma in situ, aka Stage O cancer. The Times interviews women who had surgery (ranging up to a double mastectomy) who later found out they didn't have cancer after all.

I've been a critic of Susan B. Komen for the Cure, but it turns out that Komen has studied this. According to the Times, Komen reported in 2006 that in 90,000 cases, women who receive a diagnosis of D.C.I.S. or invasive breast cancer either did not have the disease or their pathologist made another error that resulted in incorrect treatment.

So--if you're diagnosed with Stage 0, get another opinion. So you won't need a lawyer later.

Single and want to be on TV?

2010-07-15T16:52:00.002-05:00

Want to tell your cancer story on TV? This is a query from SIngle-Woman.tv,

Query:

Looking for stories from men and women who were single when they
were diagnosed with cancer? Submissions should include brief
summary of the following: Type of Cancer. Who was your network?
How did you manage finances? How did you diagnosis, treatment
and recovery impact your life? Please include photo.

Reply to: query-g50@helpareporter.com

Deadline: 07:00 PM EST - 16 July