I Hate Fancy Hospital

It is 11:30 and I should be on my way to my last chemo appointment, along with my friend S who flew in from San Francisco for escort duty, but Fancy does not have me on the schedule. In fact, I am not on the schedule until a month hence. I called this morning to see if I needed to be there at noon, my appointment time, or later, because I often wait and wait in the huge and distressing cancer ward waiting area. I also called because I remembered I didn't get a printout of this appointment, though it was understood I was coming in today at noon. Or I thought it was understood. After seven sessions on Mondays at noon (one on a Tuesday because of a holiday), and being told that Taxol is administered every two weeks, I thought it was obvious that I should be seen today at noon. But my nurse is on vacation, and I think her backup is on vacation, and given Fancy Hospital's tendency to overbook (worse than the airlines? I can't decide) I should not assume anything. But I did. I am very very very upset.

My voice cracks when I talk on the phone to the receptionists and chemo administrative director and the nurse who called me back after she was (allegedly) paged twice in 45 minutes. And so now it is 11:52 and I have been called back and told I have my appointment at 1. I can't tell you how momentous the last day of chemo is. It is, well, the last day of chemo. The end of the beginning. The end of feeling you are blasting the cancer away and now you are left up to your own devices and tamoxifen. P said her father became angry when his chemo ended and I understand why.

The End of an Era

For the past few days I've been obsessed about the big media news in town: the buy-out of the Chicago Reader, our city's leading alternative weekly, by Creative Loafing, an out-of-town chain that, from what I read, is not known for hard-hitting journalism or great writing. The first piece I had in the Reader was maybe in the late 1970s or 80s and I've been an intermittent contributor since. Maybe seven years ago I was part of a small group of freelancers who negotiated better terms with editors, and that made me feel more part of the newspaper and the freelance community. I've had my battles with editors over story ideas and the rhythm of my sentences (don't mess with the rhythm of my sentences) and the editors did decline to include this blog on its pages or site, but I am grateful that they published some of my non-mainstream work, and gave me deadlines when I needed them. About a half-dozen of the pieces in my essay collection were first published in the Reader. If you would like to be obsessed too, then I urge you to join what's become a town forum of readers and employees. It's in the comments section of Michael Miner's blog on the Reader site. It is hoped that the Reader's name won't change. It's disconcerting to read of an alt weekly in the chain referred to as "the Loaf."

But as the French say, after bread, art is the great need of the people. I think the French said it. I saw an exhibition on the saying in a Paris gallery in the late 1970s. All the sculpture was made of bread dough. According to Danton, "Après le pain, l'éducation est le premier besoin du peuple." Kropotkin says this, "After bread has been secured, leisure is the supreme aim," but I prefer "art" to "education" or "leisure." But maybe "leisure" is right, and thus, the supremacy of creative loafing over the art that is or was the Reader.

B-watch & Komen-watch

Our friend B spent last night on the floor next to his bed. His helper didn't show up last night and his cell phone was downstairs. The helper showed up this morning and got him dressed and into his scooter. B called me to come and plug in his new scooter. It took both of us about 20 minutes to figure out where on the scooter you plug in the plug-thing. I couldn't read the info booklet without my reading glasses, and B said it didn't tell you where the cord went. But as I said, finally we prevailed. You'd think that a manufacturer of scooters for disabled people would have a special easy way to recharge the battery of the thing.
B is advertising for a new helper. If anyone knows a reliable person who can dress and undress someone with MS, as well as do very light housekeeping, and, if possible, light clerical duties, let me know (in comments section). It would help if the person lived nearby--Lakeview or Uptown.

Our friend S went out with Nancy Brinker when she was just a Homecoming Queen runner-up from Peoria. Now she's a Dallas socialite and founder of Susan G. Komen for the Cure, named for her dead sister. In today's post, Capitol Fax talks about Komen and contributions. You see how important apostrophes are when you read the last sentence. Does he mean politician's or politicians' cash?
Reports Rich Miller of Capitol Fax:

"Only days after Antoin 'Tony' Rezko was indicted on federal corruption charges last fall,[Illinois] Gov. Rod Blagojevich's campaign moved quickly to try to limit the fallout and gave to charity political donations directly linked to one of the governor's former top advisers and fundraisers.But one charity eventually turned down the tainted money and sent the Blagojevich campaign a check back in March for $44,846.03, according to state-mandated campaign disclosure reports the governor recently filed.Officials for the Texas-based Susan G. Komen Breast Cancer Foundation, now known as Susan G. Komen for the Cure, said they returned the money because they do not accept political funds. [*]Despite the Komen foundation's explanation, state campaign disclosure records for the past seven years show the foundation and its Illinois affiliates previously accepted $2,110 in politician's cash, ranging from an ad in a program book to fundraising tickets to outright donations."

In other Komen news: Earlier this month, the Komen gave $2 million to oncologist Insoo Bae of the Lombardi Comprehensive Cancer Center at Georgetown University Medical Center to continue to study the the interaction between environmental carcinogens and genetic risk for breast cancer. The Lombardi Center reports that Bae is looking at the way genes and environment combine to cause cancer. Specifically: "Bae will examine a range of environmental carcinogens – such as cigarette smoke, alcohol, and dietary factors – to identify those agents that increase the probability that BRCA1 defective cells will become cancerous." Komen needs to keep going after the causes of cancer, and spend less time and money tying pink ribbons around everything that breathes and everything that doesn't. The Bae research is good news for us Ashkenazim, those mostly likely to have a BRCA1 or 2 mutation in our genes. As for me, I'm waiting to hear from the jolly genetic counselors about what my blood sample revealed. According to them, I have an 18 percent chance of having a BRCA gene defect. I probably don't. It would be nice if I didn't. About 90 percent of Jews in the U.S. are Ashkenazi, from West, Central and East European countries. The rest are Sephardic, from Mediterranean and Arab countries. They're more likely to have mothers who belly-dance. We're the ones whose grandmothers spoke Yiddish. Yeah, yeah, I know that your German-Jewish grandmother quoted Goethe and didn't know from Yiddish. I'm speaking in general.

The Million-Dollar Brazilian

Well, first of all, it's probably not a million dollars. It's probably going to add up to $100,000, billed to insurance. But the "hundred-thousand-dollar Brazilian" just doesn't cut it. Doesn't begin to conjure up that sexy gal from Ipanema. What I'm talking about, you've probably guessed, is the outrageous and barbaric practice of paying someone to apply hot wax to your pubic hair and rip it out. I don't know anybody who's had this done. Or rather, nobody's told me she's had this done. Probably I know lots of women, young women, very young women, who have undergone this procedure. I just haven't seen the evidence. According to an Esquire-Marie Claire survey last fall, 66 percent of women in their 20s have their pubic hair trimmed or waxed, and 18 percent keep it bare. Half of women in their 40s have their hair trimmed or waxed, and only 5 percent have it bare. Or clean, as some put it. A Brazilian, according to articles I've read, is either having every bit of hair yanked out, or leaving a "landing strip" or "Hitler's mustache." The practice is outlawed in the UK, which seems wise--so that a celebrity I've never heard of, who's the widow of someone else I've never heard of, jets to J. Sisters International Salon in New York to be waxed by one of the seven Brazilian sisters who should have been arrested at the border for importing this practice.

I subscribed to Esquire for the same reason I subscribed to Shape--because it was free, offered by Delta Airlines because the corporation didn't want me to cash in my points. In Shape I read a full-page ad I didn't quite understand, but slowly figured out was for a product that allowed you to wax your pubic hair in various shapes. The question is: Why? Beyond a passing attack of whimsy? Apparently, Shape readers are used to waxing themselves and it didn't have to be spelled out. According to Naomi Wolf, men want women to be bare because they want their sex partners to look like porn stars.

Cancer Bitch has never waxed anything, including floors and furniture, though in her youth she bleached her mustache and arm hairs. Now she doesn't have to because Adriamycin and Taxol have left her hair-depleted. She has two half-eyebrows, just a little hair left on her shins, and a threadbare little nest above her crotch. How can I say this delicately? There's a slit underneath the nest. It reminds her of the profile of a crocodile. The slit was covered for years and she forgot it was there. Forgot that her self was shaped like that, in front. In fact, Cancer Bitch saw a painting in the Ufizzi Gallery that showed just such a slit and she thought the painter had erred. She's surprised to see herself like this in the mirror. Her skin feels soft, very soft, velvety in fact, but all wrong.

Cancer Bitch has wanted to discuss this topic for a while, but has been afraid. She is afraid of attracting pornsters to this site. Also, she is non-tenured and non-tenure-track. About 15 years ago a colleague, who was an inspiration to the rest of us adjuncts because he had finagled a year-long contract that included health insurance, lost it all with just a few words. He appeared on TV with his girlfriend, either naked or having sex or both. It was part of an interview, in which he mentioned, unfortunately, where he taught. Alumni from the department were upset and made it known. And soon there was no more lucky colleague with a contract and health insurance at Well-Regarded University. There were few traces of him, either, except here and there when cleaning out a file drawer, we'd come across a suburban phone directory with his name on it.

My insurance comes from L, not the university. But I'm afraid that the president of WRU will read this...and what? Is Cancer Bitch puffed up with her own importance? She's insulting the president by imagining him to be narrow-minded. He has a contract. She doesn't. And that makes her nervous. But this is why the second wave of feminists fought, so that in the early 21st century, a Cancer Bitch could write about her loss of pubic hair with impunity.

Don't Do It Yourself or Trayf Sabbath

I've been eating high protein, low fat and have been cooking fish and chicken at home. I was tired to salmon (after having had it twice in a week) and rode my bike to the Food Hole to get some shrimp. That's the only other kind of seafood I know I like. I don't know fish very well. I was allergic as a child, and vegetarian in my crucial learning-to-cook days. At the fish counter I went for the wild-caught shrimp, the smaller, unshelled ones. I brought them home and deveined (a euphemism for pulling the guts out) and shelled (or de-shelled) them. I was grossed out to be dealing with the raw flesh and kept thinking of how my father, who kept kosher, used to shudder when he saw shrimp and say they looked like worms. They do. At the same time I had an atavistic urge tear into them raw. I didn't. This explains the appeal of sushi. I boiled the shrimp and mixed them with organic cucumber in a soy-ginger-garlic sauce. Household hint from my friend D: Peel a ginger root and cut it into chunks and store in refrigerator a jar filled with sherry. They'll last a long time. The shrimp were OK. The cucumbers absorbed too much of the marinade, and the shrimp, too little. The kitchen smelled very very fishy and I was in a hurry and just did a basic, or un-basic clean-up. I had told my friend B I would come by after 8 to go to the Printers' Ball, the third annual festival of literary magazines sponsored by the Poetry Foundation. It was at the Zhou B. Art Center at 1029 W. 35th St., and it seemed like the best way to get there was to take the Halsted bus all the way down. B is in a wheelchair and it's too hard for one person (especially one with cancer) to help him with the transfer from chair to car to chair to car to chair.

We ended up waiting almost an hour for the bus. We were joined temporarily by a tanned woman with scars on her nose who was 58, same age as B, and was wearing a long-sleeved T-shirt commemorating a sorority pledge week, in which I doubt she took part. At first I thought she was drunk but she might have just been friendly and slightly out of it. She seemed like an addict of some kind. She had been given a CTA pass at Thorek Hospital and was going to Diversey, which is just a mile south. She had been married 25 years (as had B) but her spouse died three years ago of lung cancer. He smoked Virginia Slims for 40 years, she said. B still has his wife. She's in Mexico at the moment.

Finally the bus came and it wended it slow way down to 35th Street, the middle of Bridgeport, heavy Daley territory, though Daley the Younger now lives in the South Loop. Young people holding magazines were coming toward us. It seemed like a miniature city, with short buildings. A bank, auto-supply and repair stores, a hot dog place that looked straight of out Central Casting for Small Town 1954 with its hand-painted signs. There were guys carding people at the door, though the Ball had been billed as an all-ages party. We went around back to the ramp. Inside there were tables with what was left of stacks of free magazines. On the wall were the Zhou Brothers' paintings though I didn't get much of a chance to look at them because I was intent on using the bathroom. There was just one in the bar/cafe. I talked to a young woman waiting and at one point she put her hand over her mouth. Did that mean I had fishy-garlic breath? Maybe. (L later told me about an experience he had Friday afternoon on the L. He was sitting next to a woman and saw that she had her sweatshirt held up to her nose. As soon as a seat was available across the aisle, she ran to it and lowered her shirt from her face. He smelled around and smelled himself and came up with nothing. We think it might have been garlic. Once after I'd eaten a lot of garlic we went to the Art Institute for a crowded show and heard a nearby little girl ask her mother, What's garlic? We assume it was what was on pre-Cancer Bitch's breath.)

I went back out the main room and a young man at the mike was saying that everyone had to leave. He said the police wouldn't say why. I found B at the bar and there was a stout blonde cop yelling at everyone, You have to leave, you have to leave. A kid at the bar said to her: Charge card. She said: What? He said: I'm waiting for them to process my charge card. She yelled at him for being so cryptic. No one knew what was going on. It was supposed to last until 2 and it was only 11 or so. As we went back down the ramp, a cop told us there was a minor infraction having to do with the number of people. This made no sense to me. There was plenty of room to move around (87,000 square feet), and the cops were the ones at the door. Didn't they count the number of people coming in? I went to the first Printers' Ball at the Hot House, and someone was keeping count of the crowd, because people were lined up on the street, and were being let in only as others left. C.J. Laity of ChicagoPoetry.com opines about the early closing: "Chicago's finest, what the hell is your problem? Go find some real criminals to torture; and let a few people have some fun once in a while." A more measured report can be found at Chicagoist, which quotes others saying there were "multiple liquor license violations."

The north-bound Halsted bus was right there waiting for us and we had a relatively quick ride home. B had called the helper who normally comes at 10:30 or so get him into bed and told her not to come then. He'd left a message for her to come later, but didn't hear back. So I helped him off with his pants and shirt and socks and helped slide him into bed with a special polished sliding board. It took a while.

I got home around 1. L had cleaned up the kitchen because he couldn't stand the smell. I began to understand the suburban legend about the woman whose husband left her. He got to keep the house, and her last night in it she cooks shrimp, stuffing the shells inside the curtain rods. He can never sell the house because of the terrible smell whose source is never found.

This morning I watched a video on-line about shelling and deveining, and learned that the way I'd done it was correct. Some people say you don't have to devein small shrimp, but I think that even when boiled, shrimp guts are not good for people going through chemo. I spent a very long time with the rest of the shrimp, boiling them then shelling and deveining. It's less slimy and smelling to cook them first. Then I mixed them with more cucumber and marinade. It's not worth it: Buy the shelled and deveined.

I feel slightly achy (This spelling looks strange because I have a friend named Achy, pronounced "ach-y," not "aky") and tired because I couldn't sleep this morning, but nothing like the last two Day 5s after Taxol. Is it the Vitamin B? Yesterday's acetaminophen? Or, as the doctors say, just one of those things?

Waiting for the Tsunami

This is Day 3 after chemo, so the side effects are due to kick in: depression/anxiety and bone pain. But they haven't. I slept a lot today because I was feeling run down. And then rode my bike and got some work done tonight. But. The side effects aren't here yet. I'm taking medicine for the neuropathy (finger and toe numbness) but nothing for the bone pain. But it's not here. I'm waiting.

I can't feel the cancer, so the chemo and side effects take the place of the cancer. But not yet.

Cancer & the Corporation

Just when you thought that breast cancer was the only cancer with corporate sponsorship with questionable motivation and focus--here comes a story from the New York Times on what happens when skin cancer joins with Neutrogena. I read it today in the Chicago Tribune, which cut the 1,200-word story in half. (See NYT story in Comments section.) Headline: "Doctors Balk at Cancer Ad, Citing Lack of Evidence." Neutrogena paid for a public service announcement on skin cancer, to run in 15 women's magazines this summer. The message: Use sunscreen and "if left unchecked, skin cancer can be fatal."

T'ain't that simple, say public-health doctors. Says one: "We have some pretty good evidence that sunscreen will reduce your risk of the less lethal forms of skin cancer. There's very little evidence that sunscreens protect you against melanoma"--which causes most skin cancer deaths. He adds that even though more more people are getting skin cancer screening, the incidence of melanoma has risen.

The American Cancer Society came up with the ad message and one ACS official says, "We've taken some license."

Neutrogena is a division of Johnson & Johnson, "whose sunscreens carry the society's logo," the Times points out.

Some of us are old enough to remember the Johnson & Johnson ads urging us to use baby oil to tan when we lay out in the sun. And that's what we did. But apparently we don't have to feel so guilty for it, because even if that practice makes us more vulnerable to skin cancer, it's not the kind we'll die from. So that's good news.

Meanwhile, Cancer Bitch slathers on sunscreen for reasons of vanity. She has light patches on her hands that don't tan. It's called vitiligo. And is the least of her problems. Still the patches show up more in summer (as the adjacent skin tans, despite the sunscreen).

Chemo Day

Just another chemo day today, seventh in a series of eight. In two weeks it will be over, everyone says, except that's not exactly true. The chemo will be over then. Then I'll take pills for 10 years. The chemo itself isn't so bad. I mean it's not great fun to spend six hours at the hospital, even if it's Fancy, but there are worse things. Like four days later when the bone pain and depression/weeping sets in for the next three days. But I hope to stave that off with heavy drugs--Tylenol w/ codeine, generic Ativan, and if necessary, I'll dip into my little stash of generic Valium. I will report on the results here. I still have some numbness in my fingertips and toes, though it gets better (which is less) each day. Nurse L said I can increase my dosage of pink anti-numbness capsules from one a day to two.

My friend G picked me up and took me to chemo. We got there about 20 minutes early and had to wait. The women who take blood from my port are always very nice and cheery and motherly. It doesn't hurt very much--and I think I have a low tolerance for pain. They spray "cold spray" on the site where the port is buried (upper right chest) to numb the skin. If any of you are considering getting cancer and having chemo, I would recommend having a port inserted into your body, even though it feels alien the first week or so and fills you with regrets. But the alien feeling does fall away. And now je ne regrette rien. At least about the port.

G had to leave at 3:30 and passed the baton to L. We watched part of Nicholas Nickleby from the selection of DVDs and video cassettes in the chemo ward. Nurse L brought them to us in what reminded me of a little red wagon. The movie was rather melodramatic, with good as Good and evil as Evil, so when the Taxol was finished being dripped into me, we decided it was not necessary to stay around and see the rest of it.

At one point I asked L to get me a blanket because I was cold, but by the time he found one, I'd had a hot flash and was sweating. As I told Nurse L, the hot flashes are the least of my problems. Feeling the void in the world is the worst, followed closely by bone pain and then weeping mixed with irritability.

I was very tired and so was L. We took the bus home. I sat next to an older woman with dyed brown-red hair who goes to Thailand once a year. On the other side was a Buddhist or Buddhist-file. The older woman's cat escaped yesterday and she was upset about it. At least he had claws so wouldn't be defenseless in the world. He doesn't have a tag, though, or a computer chip in his ear, so he'll have to find his way home himself. She put up Lost flyers but the rain wrecked them. She and the other woman talked about shih tzus and one of them said they were originally ratters in China. Didn't the Chinese have cats? I asked. I don't know, the Thailand traveler said, maybe they ate them.

L and I tried to figure out why people are more apt to talk to one another on buses than on L trains. Because buses are more contained, are more like a passenger car, are quieter? We don't know.

We had a very nice dinner at home: broiled salmon with garlic and paprika, steamed cauliflower mixed with curry paste and lemon juice and sauteed onions and garlic, and a little steamed kale. We didn't take a picture of our meal, as our cancer cousins in Marin do. But we could have. We have very nice plates in two patterns. Salmon has omega-3, which is supposed to help combat chemo brain. It's hard to figure out what's chemo brain and what's middle-age word-retrieval slowdown. G is on a committee to plan an international writing festival. I was suggesting she recommend ----Umberto? Humberto, the Uraguyan who wrote Voices of Time and was a big hit when he spoke at the Museum of Contemporary Art here. About 15 minutes later the name came to me: Eduardo Galeano. I don't know where Umberto came from. I also thought of the Polish-born French writer Agnes ____ . At home I found her trilogy: Le Grand Cahier, La Preuve and Le Troisieme Mensonge. Her name is Agota Kristof . I was close, but no cigar: she was born in Hungary and lives in Switzerland. I discovered her work when I asked a friend who teaches French to recommend of a book that wasn't too difficult. The three novels are simple but stunning in their depth and darkness, and twisty at the end.

Yesterday my friend J from Ohio was in town and we had brunch with her hosted by the rabbi (and his wife, who was the chef) who married us as well as J and her husband M. J graciously decorated my scrubbed and shaved head with curlicues, filigree, tiny peace signs and grape leaves and an easy-to-read U.S. out of Iraq in back. My head was quite the hit in Chemolandia today. J is a professional artist and did a lovely job. Most of it is henna, which is a greenish paste that dries black and eventually peels or falls off to reveal red-brown underneath. I try to keep the dark on as long as possible but it's so tempting to peel and pick. It's like fifth grade when everyone was pouring glue on her/his (mostly her) palms and pulling off the dried "skin." It's as satisfying as stomping on plastic bubble wrap. Not everybody appreciates that pleasant activity. Which is too bad.


Last Friday at yoga I was depressed and somewhat weepy. We often do partner work and that day we paired up to help one another do dancer's pose. It's what it sounds like: you do an arabesque arching your back and holding the foot that's behind you as you keep pushing it back. Here's what I mean. The help was to critique your partner's form. My partner was one of The Twins in the Back. The Twins are girls who look about 20 and have dark, wavy hair. Usually they partner with one another. You can't blame them; they're perfectly matched by height and weight. Lately they've come with a third girl who's shorter. I'd said hello to them but never talked to them before. They always stay on the back row, in a corner. This time only one of them was in class. She asked me about my head tattoo and I told her I was going through chemo. She said that she went through chemo "in my country." She's from Peru, it turns out, and she was diagnosed with lymphoma at 14. She was in the hospital once for two months. Overall, she had chemo and radiation for two years. It was in Lima, and she lived about a mile from the hospital. She said her family was really close, that there are four girls. She also said it was very hard to lose her hair at 14. It makes you stronger, she said. She was reassuring because I think she could tell I wasn't having a good day, to say the least.

Today in class all three were there, and all in the back. I did partner work with my friend G. I wanted to at least catch the eye of the twin I talked to last week. But I couldn't tell which twin she was.

The Wild Girls of Genetic Counseling

Today I went to the Cancer Genetics Program at Fancy Hospital to start finding out if I have either of the BRCA gene mutations, more common among us Ashkenazim than the general population. The mutations increase a person's risk for both breast and ovarian cancer. If I have the mutation, I'll send my right ovary into storage. (The left has already gone to its final reward.) I was the only patient in the office, which just had three chairs in the waiting room. It was so odd and quiet compared to the vast waiting area of Chemolandia. A chirpy intern had interviewed me on the phone already to gather all the information about cancer in the family. (Yes, we have cancer, we have many kinds of cancer: colon, endometrial, breast, stomach, lung, skin, parotid gland. Not to mention leukemia and Waldenström’s macroglobulinemia.) The intern came out to get me and I joined her and the genetic counselor, who was tall and blond and said, Someone's been writing on your head. The intern explained everything to me via diagrams in a book. She did a good job. Based on my family history, I have an 18 percent chance of having a BRCA mutation. I decided I wanted the blood test for it, and I also agreed to participate in some research, so four tubes of my blood were collected.

The blonde measured my head to see if it was big. It's not. It's normal. I always thought it was big, but that's because of the bulkiness of my former hair. There's a rare syndrome, Cowden, which is caused by a genetic mutation and makes you more likely to develop breast, thyroid, uterine and maybe colon cancer. I may be tested for that mutation, too. Besides a big head, other symptoms of Cowden syndrome are awkward gait, skin tags and bumps, what sounded like "hammertoes" in your colon, and lipomas. I've had a couple of random bumps removed and also a lipoma (which grew back). A lipoma is a fatty (lipos=Greek for fat; think liposuction...and My Big Fat Greek Wedding) tumor under your skin. I have one on my upper arm that grew to replace the one that was cut out. At the time of the surgery, I asked the surgeon to show it to me, and he did. It was yellow like chicken fat. So now my homework is to get the pathology reports from the bump- and lipoma-ectomies and my colonoscopy. The Counseling gal said tongue and mouth bumps can be part of the syndrome, and she checked out a tongue bump I've had for about 15-20 years. She looked around my mouth and gums. I felt like we were checking for ticks. (My friend D asks: What's considered foreplay in the Ozarks? Checking for deer ticks.)

I have to fill out a form to help researchers looking at another mutation. The counselor said there is follow-up for that study every two years. So people will call you up and ask, Do you have breast cancer? I asked, picking up an invisible phone. I picked it up again, Do you have cancer? Do you have cancer? Are you dead?

It was that kind of atmosphere, where I felt I could do that. If those two are any indication, genetic counselors are a load of fun.

Today was the first time in five days that I was happy. I didn't feel like crying. I could laugh. It made me realize how miserable I'd been feeling.

I'll get the results in about four to five weeks. If I have BRCA1 or 2, then I'll have to think about getting my right breast removed, too. L and I have been saying that the mastectomy was nothing compared to the chemo, but still the mastectomy was something. And those fucking drains stuck inside my body! At least if I do have to get the second breast removed, I'll be grateful that I haven't had reconstruction yet. I could get both breasts filled up at the same time.

Years ago I was friends with a genetic counselor. We met when we were docents for the Chicago Architecture Foundation. When she gave tours of Glessner House, she'd say: See that cabinet over there? It's 100 years old...and it's never been opened. Her father gave Jewish tours in New York, and gave us a private one once of the Lower East Side. Our friend had breast cancer. And then she died.


If anybody ever offers you the choice between suffering and depression, take the suffering. And I don't mean physical suffering. I mean emotional suffering. I am hereby endorsing psychic suffering over depression.

Don't get me wrong; suffering, though universal, and though its universality provides the basis of Buddhism, is bad. Today I suffered. It meant being weepy, rageful at the drop of a pin, filled with ire at someone for being 14 minutes late (when it didn't matter at all; and I didn't show my rage) and at a fucking stupid fucking imbecile waiter who didn't know that a goddam fucking matte is supposed to be dark and smoky, and not the color and taste of pale green swill with little green specks in it. (I didn't yell. I had a sharpness to my voice a few notches below sarcasm and I smiled deceitfully. I gave a good tip.) At the coffee house and after I was weepy from time to time and not able to balance in Warrior One pose in yoga because my toes were numb from the horrible Taxol. I wept into my purple yoga mat while folded into child's pose and then wept face up into the open air with closed eyes and sweaty head (my perpetual clammy head, compliments of Taxol and menopause) while lying on my back with my legs in butterfly and then I accepted defeat, that the weeping would not end, and rolled up said mat and walked up the street to the drugstore to pick up some refills and a drug that Nurse L had just called in to combat the numbness. Suffering meant crying out when a person crossing the street with an umbrella over her head nearly ran me down, and suffering was going to the drug store and finding out that the very new dolt of a clerk didn't have my new drug, it would take ten minutes, he said. I was weeping and hovering at the counter like a desperate addict in my rain-dropped-on bald head, t-shirt and torn shorts, and I went back to him and said, Could you give me just a pill or two for now, and finally, Could you make a little faster because I'm in a lot of pain, and feeling a little guilty because I wasn't in pain-pain, not about-to-die-and-double-over pain, but in weepiness pain, the pain of not wanting to be there, standing around and weeping and feeling a hole in my heart of desperation and sadness and rage. A dark wound in my heart. And suffering meant walking home with my three drugs finally, my umbrella above my head, knowing I would be home soon, where I would be able to collapse and even work on the stupid idiotic fucking book review, because I was suffering and not depressed. Suffering meant I knew that crying would make me feel better, once I could stop, and that I knew that underneath the suffering I had a core of appreciation for the thunderstorm that had broken the hot spell this afternoon, even though it had drenched my poor bike and helmet that I'd left moored to a parking meter on the street. Underneath the suffering was psychic pain, which is an entity, but I can deal with an entity, it is better than the erosion created by depression, which is more absent than absence, depression is the oxygen-gulping aridness of the void, and it fills every part of you with the knowledge that nothing matters, the universe is as meaningless as it is infinite. So that there is no part of you left that can slither its way around and get its interest quickened by an idea or person or mind or glazed blue Moroccan tile. There is no room for beauty or Marx or charity or alternatives to war. There is only the ash that's left after a fire, after a long long rain.

Pain & Pain

The topic for today is pain and pain, pain that causes weeping and pain that comes with weeping, and how difficult it is to tell the difference between the two. Close readers may recall that after my first Taxol infusion, I had joint and bone pain that made me cry three days later. So I sat around and watched DVDs and TV for two days. This time around, I came armed with a corticosteroid to stave off the pain. Nurse L told me it could cause anxiety, so take it morning and mid-afternoon, not evening. And then on the third day afer the second Taxol, I was anxious, terribly anxious, because of the drug, because I was writing a book review and I'm not wired to write book reviews, they make me anxious, they tax a part of the brain I don't have. And the fourth day, I was in some joint pain, not too much, but felt like crying. I was anxious and depressed. Desperately depressed. I went to yoga and felt like crying and only sorted it out later that it wasn't because of pain or tiredness but because of depression. Soul-corroding depression. The kind of depression where the world seems like a vast desert and there's nothing to connect to, to hold onto, that every human in the universe is just a little desperate bucket of misery just going after distraction. And you can carry on a conversation in the midst of this depression, but the conversation is going on a parallel, pretend-world, what's real is the feeling underneath you can't shake, that nothing matters. And you can't stand it.

And then I would feel sadder and sadder, thinking that this is how I felt in my 20s and 30s, and I'd wonder how many other people are feeling this, all the time, and times when I've enjoyed myself, for example, when I taught a class in the fall that was really fun, were there people in it who were desperate? I went through motions, we went to dinner, to a movie, we rode our bikes home, I wrote about this depression, and then in bed I cried and cried and told L all this, and he listened and it wasn't much better but we went to sleep.

And in the morning I was OK. I didn't feel the doubleness. I didn't take the last corticosteroid. I felt a little shaky Saturday but "myself." I could laugh. I could connect with the world. My joints hurt a little, and I took a little acetaminophen. I made myself keep away from the review-in-progress or -in-destruction. I didn't want to read so I picked up Persepolis, the graphic memoir by Marjane Satrapi, to read between meeting with my friend P for lunch and running errands. (Yeah, it's reading, but also has pictures.) I watched some TV, finding myself for the second time this summer watching some show with Dick Van Dyke as a doctor. We rode bikes to dinner with M. We talked about periods of depression. He was impressed that mine went away in a day. But it was still so horrible.

The Taxol caused the weeping. The corticosteroid caused the depression. Next time I'll get help for treating the emotion. I think that's much worse than the pain. But the pain is pain.

Cancer: Light & Dark

I'm trying to make sense out of two articles about the effect of artificial light at night on breast cancer rates. My friend C sent me a recent piece about this from the Chronicle of Higher Education; I'll post the article as a Comment. A better piece was in Science News. In short, the researchers say that in order to reduce your risk of breast and possibly prostate cancer:
-Sleep in a dark room and at night. More than nine hours is better than less.
-Stay away from foods with linoleic acid--which is rife in processed foods that contain corn syrup, corn oil, safflower oil and cottonseed oil. Linoleic acid helps tumors grow.
-Don't work the night shift. And if you do, don't raid the vending machines with your workmates because a lot of the packaged food in there is laden with linoleic.

Except. It's not that simple.

But first, the main idea: "'Breast tumors are awake during the day, and melatonin puts them to sleep at night," according to researcher David E. Blask, quoted in Science News. Another scientist says that you don't have to be asleep for optimum melatonin production, but you have to be in a dark room. From Science News: "Melatonin forms in the pineal gland, located in the brain, and circulates in the bloodstream. Blood concentrations of the hormone rise after dark from low daytime values and usually peak in the middle of the night." Studies have shown that women who work at night are more likely to have breast cancer, hypothetically because their melatonin levels are suppressed by light at night. In addition, a Finnish study showed that women who slept more than 9 hours a night were less likely to get breast cancer. And blind women have been shown to have less breast cancer than other women, and a "high average" level of melatonin.

Melatonin also keeps cancer cells from absorbing linoleic acid, which promotes cancer growth.
So, the experts say to sleep in a dark room. Blask does this himself and also takes melatonin supplements. Another researcher cautions people about taking melatonin because it's not regulated. But as a letter writer to Science News asked: "Are you really going to tell me you aren't going to take melatonin--if you're convinced that it might lower your chances of getting cancer by as much as 50 percent--because you are afraid of impurities?"

It seems that you could trade day for night, and get your melatonin from a dark room at midday. But that's difficult. "In theory, shift workers could swap their schedules completely and maintain a natural cycle of melatonin production during their sleep hours in the day, rather than the night," the Chronicle says, paraphrasing researcher Richard G. Stevens. "But most people who work during the night revert to a more typical schedule on their days off." Stevens tells Science News pretty much the same thing. Again, a paraphrase: "On their days off, most shift workers concentrate their activities during daylight, which upsets their circadian rhythms as much as commuting across several time zones would, he says." Does this disruption affect melatonin production? Apparently. But how? Nobody says.

And what if you sleep partly in the daytime but while wearing a blindfold, as some of our best Cancer Bitches do?

Scientists have been telling us lately that we're not getting enough Vitamin D because we've become so afraid of the sun. Now we're not getting enough dark. Again, a letter-writer asks a good question: "If the daily light-dark cycle affects melatonin, is there a seasonal change in cancer rates in the Northern (and Southern) Hemispheres?" I have my own question: Is there more cancer in the tropics?

Taxol: Once More, with Feeling

I had my second round or session or infusion of Taxol on Monday, with chemo escort S. I received three medical responses to my report of "bone pain" from the first session. First was the unfamiliar self-identified "nurse who works with Dr. --" who bounced into the exam room and checked my breathing and breasts. I told her about the pain and she said to try Aleve or ibuprofen. Next was the oncologist (who also checked my breasts and breathing), who told me I could also try Advil, and if that didn't work, to call the office, even on the weekend, and I could get a prescription for a steroid to help. Third, was L the Platonic Ideal of Oncology Nursing. She's the one we ran into when we went to eat at Caliente a couple of months ago. The first time I talked to her, on the phone, she sounded like she was meeting the friend of cherished friend. She is always friendly and seems genuinely glad to see me and whoever's in my entourage.When we first talked about small mouth sores I was getting, she wrote me out a prescription for this vile pink mouthwash mix that I ended up getting filled last time around. When I told her about the bone pain, she asked what number it was from 1-10. I said 3, but that I felt like crying. She laughed and said it sounded more like 10, and she wrote me a prescription for the short-term corticosteroid (dexamethasone), to take prophylactically. I went to the drug store last night. As I was giving the paper to the clerk, I noticed that L had written 2006. I said to the tech, It's got the wrong year. I can change it. She said, aghast: You can change it? (It must be a felony. Maybe even suggesting it is a felony.) She asked the pharmacist if she could fill it, and she said OK. I said, I didn't even have cancer a year ago. (The prescriber was an oncologist.) That, my bald head and the crispness of the prescription must have convinced them.

Last night was the first July 3 we've spent in Chicago together that we didn't go downtown to the fireworks. L (husband, not nurse) thought that being surrounded by a million people wouldn't be the best thing for a Cancer Bitch with a depressed immune system. We rode bikes, looking at houses and condos we're pretending to be interested in, then went to a new branch of a Mexican restaurant around the corner, even though we'd bought all kinds of organic produce Monday night. The guacamole was good, the chips were oily. At home, we spent about 10 minutes on the roof looking at the top edges of the fireworks behind the Hancock Building. The rain drove us in. In the middle of the night I threw up.

I woke up this morning with slight joint pain, took the steroid and went back to sleep. Now the pain or discomfort is gone. (That's the $64,000 question: What is the line between pain and discomfort?) When I mentally scan myself for bone pain I wonder if that's what the cancer feels like when it sneaks back inside you.


I discovered only a few years ago that I like weeding. There's instant gratification. You see the plant that doesn't belong, you pull on it, and if you're lucky you get the root. Clean margins. Leaving in its place dirt, a kind of dark clean slate. Blank canvas. I think the reason people like gardening so much is because it's a way of doing something while you're doing nothing. Today I was tired and a little worn out and run down. I could feel a slight headache and some body aches, like I'd had acutely last week because of the Taxol. L was saying I should go outside because it was so beautiful. He went off into the wilds of Downstate Illinois for work. I couldn't decide what to do. I wanted to the Little Cafe Down the Street but I thought I shouldn't sit inside. So I got some petunias and banderas (?) that have been waiting on the balcony in their little plastic pots to be planted. I went out front and dug and pulled out a bunch of weeds and planted the flowers.

I've noticed in ads for hospitals and treatments there are often photos of crouching women, spade in hand. Look, I can plant now that my arthritis is under control. Look, I can bring new life into the plant world now that my cancer has been zapped. To me these pictures indicate lack of ambition. They indicate Retirement. Retreat from the real world of achievement. It's as if these people, now that they're cured or no longer in pain, can, well, cultivate their gardens. They can pursue safe avenues. You never see a picture of an angry performance artist saying, Look, now that I'm in remission I can jump on the stage and offend people again. Or a CEO at his desk saying, Look, now that I'm cured I can fire dozens of people again. Does that mean that ambitious people should not stop and plant the flowers? There's a kind of giving up of power in planting. You are following rules. The perennials won't flower all season (I don't think). The annuals won't come back even though you want them to. The shade-loving plants won't flourish in full sun. There is room for creativity: You can be original in your arranging, you can cultivate new species and name them after your friends. You can pollinate by hand, even, pre-empting the bees. But you can't change the rules.

That's the difference, I think, between nature and art.

Years ago when I worked for the Miami Herald an editor suggested I write about amateur orchid growers, focusing on a couple who had lost their only two children in a bizarre plane crash in the city. I met with them and asked them questions about orchids. When I saw pictures of their sons on top of the TV I asked about them, but they didn't want to talk about their dead boys at all. I was in a quandary. My editor had suggested that they were putting their efforts into orchids to channel their grief, but they would have none of it. So I got deeper and deeper into the orchid world, and berated myself because I couldn't get excited about orchids like they and all the other members of orchid societies in South Florida. Finally I wrote the story and it was fine. I wrote about other people's excitement. Over the years I've come to be interested in orchids, in their still, insect-like yet sculptural appearance. I think then I was trying too hard to cultivate my own orchid appreciation.

L and I pretend to be looking for a larger place, one we can live in together full time. He still has his house in Gary, which he frequents and I visit. He will be sad to give it up and says, I'll never be anywhere again where I can plant a sapling and watch it grow for 30 years. This is true.