Skin Writing

I have diagnosed myself with allergic contact dermatitis, caused by a reaction to the adhesive in band-aids. The question is whether I should see my doctor, for the dermatitis, as well as the port incision, which hasn't healed. In researching on the net I found very interesting things. I found a discussion group in which people talked about latex allergy, which I don't have (according to me). One person said he was allergic to latex and when he was in high school he once wore a condom on his foot all day to see if he would react. He didn't, and so he knew he could wear a condom where it is more customarily worn. There's a connection between latex allergy and allergy to mangoes, because the proteins in them are similar. I was interested to see that a number of people on-line had a reaction for the first time, as adults, to band-aids, both to the latex and the adhesive.

I've been reading about hives, which I thought came only in the form of bumps like mosquito bites. But they come in other forms. To wit: "The term physical urticaria refers to hives produced by direct physical stimulation of the skin. By far the most common form is 'dermographia,' which literally means 'skin writing.' This is an exaggerated form of what happens to anyone when their skin is scratched or rubbed: a red welt appears at the line of the scratch. In dermographia, raised, itchy red welts with adjacent flares appear wherever the skin is scratched or where belts and other articles of clothing rub against the skin, causing mast cells to leak histamine." That's from I do have the red welts. A medical dictionary tells me that a flare is "an area of skin flush resulting from and spreading out from a local center of vascular dilation and hyperemia," and I think I have that, too. So now that the deliberate skin writing has faded from my head, it's finding its way onto my chest. Psychics also talk about skin writing. From what I read, I think that a message appears for a short time on the skin of a "sensitive."

What is the writing on my chest? It says, I am sensitive. I am itching. I am mired down. I am turning on myself. I am allergic. I am overreacting. Allergy is an overreaction, the body gearing up to fight what it perceives as a dangerous foreign body. (But self, can't you see, it's just the stuff that makes the band-aid stay on; and it's just pollen, and mold and dust mites; what harm could they do?) Cancer is overproduction, the assembly belt gone haywire, cells gone wild. The sorceror's broom wheeling out of control when the apprentice thinks he knows enough. Too much too much too many. Let's cut it out. Let's bombard it with poison. And wait.

Night with B

We just came back from B's. He called us when we were just going out the door to buy food. His elevator hasn't been working for a week, and he was stranded outside his building. His downstairs neighbor (tenant) had carried him and his scooter down earlier so B could go out and teach. Now the neighbor was at Ravinia listening to B. B. King and B was at the foot of the porch stairs.

Precisely. We went over there and first saw the empty scooter. Then we saw legs behind it. He had fallen out and was lying curled up with his head resting on the first step to the porch. We got him sitting up and I brought him some food from upstairs. Meanwhile, I called my mother, who had called earlier. She said we should call the fire department. But they did that last week when K the Irregular, his evening and morning helper, got stuck in the elevator. The elevator repairman had come today but hadn't succeeded in fixing it, and didn't bother to call B to tell him he hadn't fixed it. B had called our friend D to come over and help but he was downtown at a concert. So we were thinking we would sit and wait with him until his tenant came back.

The Cubs had just won against Milwaukee and the lights of Wrigley illuminated the yard for a while. B's house is three doors down from the stadium. When the lights went out, L pointed to the bats careening around and we watched them fluttering and I could see why people used to think they were birds. I'd always heard of bats at Wrigley but had never seen them.

I asked B if K was coming, and he said yes, he expected her between 10:30 and 11. I asked if K's brother could come, because he sometimes does. I had never met him but asked if he might be strong enough to carry B upstairs. B called and about 20 minutes later the cavalry came riding up in a bike. With L steadying him, K's brother V carried B up two flights. He and L took the scooter apart and carried it upstairs.

And then we came home. I didn't know whether to weep or scream. I didn't do either. When I say to B, you have to move, you have to move into a building with multiple elevators, you can find a vintage one like the Wieboldt's by Whole Foods, you can live on one floor instead of two and make everything open and accessible, when I say that, I know I'm saying what I and others have said for over two years, and he knows he's heard me say it millions of times, but he and S have no intention of moving. They love their 100-year-old frame house with its three sets of staircases and garden (tomatoes, cukes, beans, phlox, peonies, apples). They love the hardwood floors they've had refinished and the walls that S has painted different colors over the years, and they love the two decks above the front porch. They love it all and don't want to leave. They don't want anything to change.


I went to the dentist today, as I am in the middle of the longest-ever root-canal procedure. I got the temporary crown today.

He is in solo practice and takes off only a week a year, during which he goes fishing in Ontario with a buddy. They've done it for 30 years. His parents were city folk, he said, but his father had a cousin, M, who had a bunch of different jobs and no job but was married to a German woman who didn't mind. They lived in Wisconsin. When my dentist was in high school, his father was dying of cancer. The cousin suggested that my dentist come stay with them. He did and learned to fish. He loved being in the middle of the water without telephones or TV, just with the silence and the fishing, away from everything.

So that is why he likes to fish. His sons used to but don't any more, after his wife talked about the suffering of the fish. But they eat fish. There's no reason to force them, he said, and there's nothing else to do at the place in Ontario except fish.

My dentist and his friend eat fish every day of their trip but don't bring any home any more because of conservation rules.

Fishing is like meditation but with a concrete goal. I liked fishing when I did it at camp. L doesn't. I don't seek fishing out, and so I don't fish. I stopped eating fish for a while and became a lacto-ovo vegetarian when I saw one struggling on a line. But now I eat fish and shellfish and chicken. I am a species-ist. We're more powerful than they are and we overtake them and eat them. I take 3000 mg. of fish oil a day, to help my chemo brain. It would be nice if my dentist's son liked to fish with him. Maybe one day he will.

And that is all I have to say about fish.

No Hair Today

Cancer Bitch has returned. Her hair has not.

Our power was out for 24 hours due to the storm that swept through Chicago and environs, but we were out while it was out. We returned to sticks and branches on the street and sidewalks, and a huge uprooted tree trunk around the corner, but our place wasn't damaged much. There is talk of siding that was ripped off, but I haven't seen it.

Last night I saw S for the first time since she left for Mexico in July. She came back while we were in Oregon. She thought I'd shaved my head; she was expecting that my hair had returned. Alas, I am still hairless. The oncology nurse said that I would keep losing hair three weeks after the last chemo. The last chemo treatment was four weeks ago. Most of my head markings are faded, too, except some messy ones around my face. I am bored with head markings. I am tired of rounding up head-decorators. I am tired of ordering tiny bottles of black jagua ink for $25 a pop, and having the black sludge inside turn runny and difficult after a month. I have a cone of henna around here somewhere that I got in an Indian market on Devon but I can't find it.

In Chicago I'm used to strangers complimenting me on my scalp and asking if the tattoo hurt. In Oregon no one said a word. It was either because it was too avant-garde or because it was too faded. I noticed very few piercings in Portland and just a few mohawks. I saw an outstanding colored spiky Statue-of-Liberty-like mohawk just east of Pioneer Square, where black-clad kids and vagrants congregate. Further east, we were excited to read in our guidebook, there's
a Louis Sullivan building downtown called the Auditorium. We went there and found a red brick building with *no* plaque on it and an empty first floor. There was some Sullivan-esque decoration, but it was an otherwise small, plain vertical building, influenced by the Romanesque. It was sort of a red-brick scaled-down version of the Auditorium (Roosevelt University) in Chicago, and was designed basically with a base, column, and capital (well, sort of a capital. The top floors have arches.) L took pictures of it and we saw a guy about a foot away from us taking pictures, too. I asked if he was a Sullivan fan. He didn't know anything about the building and was taking pictures for a collection of Flickr of "ghosts"--those faded painted advertising signs on old buildings.

We came home and consulted a Sullivan biography and looked on the web and found that the building had been designed in 1894 by Frederick Manson White. The guidebook author must have looked up Auditiorium Building somewhere and instead of realizing it referred to the one here, she thought it meant the one in Portland. She had other mistakes in her book, but this was the most grevious. You can see the building here. Scroll down.

Because of the storm, we came back Saturday instead of Friday. My neighbors had a party Saturday night and I wore a scarf with fringe. It was outside and dark and my neighbor thought I had grown rasta-strands. But alas. Alas. Just little stubs, and they are shorter than they used to get between doses of Adriamycin. The Taxol just wiped out my follicles.

Meanwhile, I am waiting. I will get the results of my first genetic tests in about two weeks. That'll tell me whether I have the BRCA gene mutation that's more prevalent in Ashkenazim like myself than the general population. If I have the breast-ovarian cancer gene mutation, I'll get my second ovary removed and then officially be ushered into menopause and will be prescribed aromatase inhibitors. I probably don't have the mutation. The genetic counselor said, based on family history, I have an 18 percent chance of having it. If the first test is negative, the blood will go through another test for more mutations. I think I'll end up keeping my ovary and going on tamoxifen, which can increase my chances of getting uterine cancer. Which could be side-stepped by getting a hysterectomy. So the fun continues.

Warning: The following is obsessive and ultimately, gross:
My attention has turned to the incision where the port was removed. It's a one-and-half-inch horizontal cut between my collarbone and (right) breast. It had super-glue-type stuff on it and a stitch or two, covered by steri-strips. The steri-strips fell off. When we left town it had scabbed up and had a little pus in it and itched. There was a little pink around the edges. Our first night in Portland we had dinner with two former steelworker pals of L's. They're both MDs now. One specializes in infectious diseases and I asked her to look at the cut. She said it looked fine. I asked if I could put antibiotic ointment on it and she said I could if I wanted to. Since, I've had a series of bandaids (some with antibiotic on them) and both the cut and the skin around the cut (where the adhesive part of the bandaid adhered) have been pink and itchy, so much so that there's a pink square surrounding the cut. I know you're going to say I'm allergic to latex, but I'm not, though just to be sure, I bought non-latex bandaids last night. The cut is now bloody and oozy. I have a large, non-latex bandaid on it and no antibiotic cream. It doesn't itch. I think it's fine. There's no pink around the wound itself, no streaks coming from it, so it's not infected. I think there are two schools of thought when it comes to cuts. One is to let it scab up, but then it leaves a scar. The other is to cover it and keep it moist, and it doesn't scar as much. But I think covering it and putting antibiotic ointment on it may make it, paradoxically, more susceptible to infection. That is my scientific finding, based on observation of a very limited population. I'm sure I'm displacing all my cancer anxiety on this small cut, but knowing it doesn't keep me from obsessing.

Damn, damn, damn

Grace Paley died yesterday.
Breast cancer.

NEW YORK (AP) -- Poet and short story writer Grace Paley, a literary eminence and old-fashioned rebel who described herself as a "combative pacifist," has died. She was 84.

Grace Paley's short story collections include "Later the Same Day."

Paley, who had battled breast cancer, died Wednesday at her home in Thetford Hill, Vermont, according to her husband, playwright Robert Nichols.
A published writer since the 1950s, Paley released only a handful of books over the next half century, mostly short stories and poems. Writing was a passion, but not a compulsion: She never felt the need to put every experience into words. Her fiction, although highly praised, competed for time with work, activism, family and friends.
"None of it happened, and yet every word of it is true," she once said of her fiction. "It's truth embedded in the lie."
Paley, a longtime New Yorker, moved to Vermont in 1988 after having spent summers here. She was named state poet laureate in early 2003. "Artists are known for challenging convention," said Gov. Jim Douglas at the time. "Great artists like Grace Paley do that and more."
In many ways, Paley wasn't a typical American writer. Her characters did not suffer "identity crises." Instead of living on the road, they stayed home, in Greenwich Village. They discussed politics, dared to take sides and belonged to clubs anxious to have them as members.
"People talk of alienation and so forth," she said in a 1994 interview with The Associated Press. "I don't feel that. I feel angry at certain things, but I don't feel alienated from it. I feel disgusted with it, or mad, but I don't feel I'm not in it."
She was a child of immigrants who seemed to embody a more intimate time, the kind of person strangers at readings would call by her first name. Short and heavyset, she had a round, open face, a warm smile and a friendly disarray of hair.
Her voice was small and surprisingly girlish, with every thought seeming to occur to the speaker only at the moment she expressed it.
Born Grace Goodside in New York in 1922, she was one of three children of Russian Jews. Her family spoke English, Russian and Yiddish, but politics proved the universal language. Her parents had opposed the czar in Russia and were supporters of the New Deal. The bitterest neighborhood feuds were not among drug dealers, but between Trotskyites and Stalinists.
"I thought being Jewish meant you were a Socialist," Paley said. "Everyone on my block was a Socialist or a Communist. ... People would have serious, insane arguments, and it was nice. It makes you think the rest of the world is pretty bland."
She started writing poems early and continued to do so even as she married a movie cameraman, Jess Paley, had two children, worked part time as a typist and became involved in community affairs around Greenwich Village.
Paley began writing prose in the 1950s.
Novels seemed too long -- she never wrote one -- so she turned to short stories. Although many of her pieces were rejected by magazines, an editor at Doubleday learned of her work and her first collection, "The Little Disturbances of Man: Stories of Men and Women at Love," was published in 1959.
"I felt some of these stories, writing about women and writing about children, I had a reluctance to write for a while because it seemed to me it was not interesting," said Paley, who published "Enormous Changes at the Last Minute" in 1974 and "Later the Same Day" in 1985. Her collected stories came out in 1994.
Paley's fiction set an easy, informal tone, but was developed out of weeks and months of careful refinement, all sentences read aloud before being committed to paper. Many stories were not so much "stories" as conversations overheard, with fitting titles such as "Listening" and "Talking."
Like longtime neighbors, Paley's characters become familiar faces, especially the compassionate Faith Darwin. It was typical of Paley that she did not look upon Faith as an alter ego but as someone who might have been a "good, close pal."
At the same time, Paley was a self-described "combative pacifist" who joined the War Resisters League in the '60s and visited Hanoi on a peace mission. She was arrested in 1978 during an anti-nuclear protest on the White House lawn and for years could be found every Saturday passing out protest leaflets on a street corner near her New York apartment.
"I happened to like the '60s a lot. I thought great things were happening then and I was glad my children were part of that generation. As an older person in the peace movement, I learned a lot from it. I mean I learned a LOT," Paley said.
"So, I don't know where things went wrong, except, whatever happens in society, the society corrupts, eats up and takes over. ... But at the same time there's always this really small little hill of hope that's right in the middle of this. You see people from that period doing wonderful things, all the things they meant to do."
Paley married Nichols in 1972. In the late 1990s, they formed Glad Day Books, which publishes political fiction and nonfiction.
She never let fame or politics obscure her devotion to family, her stepson said.
"A lot of well-known people are hard to access," said Duncan Nichols, of Thetford. "She was just the opposite. She was just a very family person. I think it's absolutely true that she would give someone the shirt off her back. She was just very, very generous that way a people person rather than a reclusive artist type."
**Links to interviews with her

Cancer Bitch on Vacation

Cancer Bitch is writing to you from Portland, Oregon. She and Cancer Bitchusband aka L have been in Oregon for almost a week, spending five days at the coast, one of Bitchusband's favorite places, and celebrated a milestone birthday (his) there. Cancer Bitch doesn't usually get along well in The Nature, but the sea was an exception. She walked on and on along the beach, picking up sand dollars, whole and broken (mostly broken), saw a starfish (probably dead), rode with friends to Garibaldi, a little fishing town with a 101-year-old marina, to get fresh crab and tuna. She even saw the half-moon reflected on the ocean. She first saw true moon light (that she remembers) only 20 years ago, since she is a citified Cancer Bitch and mostly stays around artifically-lit places. (She has heard that there's a good recent New Yorker piece about light pollution but hadn't read it yet.) She recommends Rockaway Beach, Oregon, to all her readers, and quick, before it gets all fancified and cute. It is pretty much down home now, though condos encroach. And, thankfully, like much or all of Oregon, there is espresso everywhere.

Savage Inequalities... borrow the title of Jonathan Kozol's book on education in this country. Here is a piece by Carol Marin on mammograms in our fair county. It's great that all the mainstream breast cancer organizations push for early detection. Here's a glimpse at the obstacles to testing.

Women falling through holes in safety net (,CST-EDT-marin12.article)
August 12, 2007
It is one of life's leveling moments: There you awkwardly sit in a wrinkled, blue cotton hospital gown you had trouble tying, waiting for your name to be called so you can untie, strip and be squeezed into the vice-like grip of a mammogram machine.
It was early Wednesday morning last week, and I was the only woman in the waiting area of Northwestern Memorial Hospital's Lynn Sage Clinic until Jenny Vega burst into the room. I'm calling her that, though it's not her real name, to protect her privacy.
Jenny was about 42, a big-boned woman with wild, wavy hair and a breathlessness about her as she collapsed into the chair next to me.
"You been here before?" she asked.
Yes, I said, I come here every year.
"Whoa, really? It's my first time and I'm scared," she confided. "I've never had a drink in my life, but I'm getting cirrhosis of the liver because of having hepatitis C."
Heroin user? Infected by dirty needles?
"Yep," said Jenny. "When they cut my methadone treatments way back, I said to hell with it, I'll go cold turkey. I'm not on anything now."
Why the mammogram?
''They sent me here for tests," she said, not making it clear who "they" were.
Just then, a medical staffer called Jenny into one of the examining rooms. I never got to ask if she has insurance, but I'd bet anything she doesn't.
If I'm right about that, then Jenny's examination at an excellent, respectful place like the Lynn Sage Clinic is a hopeful sign that pieces of our frayed public health safety net still exist. Vouchers for poor women, financial assistance from community groups and federal funding funneled through the Illinois Breast and Cervical Cancer Program fill some critical gaps.
The looming gap, however -- the biggest hole in the safety net -- is still at Cook County's Stroger Hospital. Because of backlogs of thousands of unread screening and diagnostic mammograms, much of that service to poor women has been suspended until the hospital can bring that backlog down.
''The program will relaunch in October,'' said Cook County spokesman Sean Howard, who added that President Todd Stroger is also setting up a nonprofit foundation to fund a fleet of mammogram screening vans for community outreach.
''The two vans we have are in deplorable condition and must be replaced," Howard said.
In the meantime, the county is referring women to other clinics and hospitals.
But it isn't working.
Here's why, according to Jude Andrews, executive director of Y-ME Illinois: When a woman arrives at Stroger Hospital, she is told to go home and wait by the phone to receive a referral to another health-care provider. In poor and transient populations, that in itself is an iffy way to proceed.
If and when she gets that call, when the woman arrives at the assigned clinic, she learns they need her records and X-ray films from past mammograms, requiring a trip back to Stroger, a $22 fee, and another wait to see if they can even locate her file. Then another trip to pick it up.
Provided she has the time and carfare for all those journeys, maybe she'll finally get her mammogram.
''Most women have stopped going to Stroger,'' Andrews said. ''We don't know how many women have been rerouted.''
''Y-ME,'' she said, ''has left a lot of messages on [county hospital] answering machines but hasn't been called back. . . . There's a real transparency issue here.''
Other advocacy groups such as Gilda's Club and the Sisters Network, she said, complain they've hit the same information stonewall.
Howard said he would look into that and called back Friday morning to say that they were addressing the problem ''as we speak.''
Meanwhile, back at the Lynn Sage Clinic last week, as my name was called to go in, Jenny was coming out. She looked relieved.
''It wasn't so bad!'' she said of her first mammogram. ''Good luck to you, Carol.''
Good luck to you, too, Jenny.

Port Removal Authority

Friday I got the port removed. It was a fairly simple process, but beforehand involved blood testing and much bureaucracy at Fancy Hospital. A very nice physician's assistant did the job. He was very young, also. When the port was put in, I was knocked out (twilight, I think they call it). This time I was wide awake and the area was numbed with shots of lidocaine. I looked away while we talked--about air conditioning, the great heat wave of 1995 (he was in college at the time), and I forgot what else. There was a tech in the room, who wheeled me in and out, and during the operation sat at a computer and drank take-out that appeared to be coffee.

I went alone. I got an MRI earlier in the week, and went alone, too. It becomes routine after a while.

While I was waiting for the port removal I started talking to three women also waiting. I would call them middle-aged, which means 10 years older that oneself. I guess they were early 60s. Two were there for their friend, who had just gotten a port installed, and was told by the chemo nurses that there was something odd about it. She'd come to get it checked out. I asked how long she was going to have chemo and she said, The rest of my life.

Oh. That kind of breast cancer. The kind that spread.

She'd been cancer-free for six years. She said it was a good six years, that she'd traveled to Europe and had other good vacations. When she was going through treatment the first time, she was living with her sister, who had also been diagnosed with breast cancer. Now her sister has cancer in her lungs and adrenal glands. The woman asked me if I had made any great life changes since my diagnosis and I said not really. I told her I'm a writer and am writing about the breast cancer, but that didn't seem like a great change. She said she's accepted that if that's what God wants for her, it's OK. She was at peace with dying. Though neither of us said the word. Her friends were trying to lighten things: Oh, you'll be fine, etc.

But it is a disease that can't be cured, can only be contained at this point.

This is a disease that makes us sisters. I taught at a writing conference over the weekend and a cheery woman came up and shook hands with me vigorously. Someone had pointed me out to her. She was treated for stage 3 breast cancer and is doing well. I couldn't tell if she was writing about it, too. She had a double mastectomy and had gotten smaller breasts, easier to jog, she said. Another woman there said she was meditating for me. Her sister had died of breast cancer, but hadn't been a fighter. I was afraid she was blaming the victim. I don't know what her sister did or didn't do. What would someone have to not do in order to be giving in to the cancer? Refusing treatment would be up there. I don't think her sister refused treatment. In Jerome Groopman's book on hope, he talks about an Orthodox woman who refuses chemo because she saw the breast cancer as God's punishment for adultery. A more senior doctor convinced her to take the treatment, but much time had passed.

L points out that I have a 16 percent chance of recurrence, which is almost the same chance that Anywoman has of getting breast cancer. Except recurrence for me could include "mets"--metastasized cancer. And that is far more serious than what Anyone might get, first time around.

Friday afternoon a doctor I'd never met called to report that the MRI results were fine, and that I didn't need to be tested again until next summer. Here's hoping. As Emily Dickinson said, "Hope is the thing with feathers." And Woody Allen, of course, said, "How wrong Emily Dickinson was! Hope is not 'the thing with feathers.' The thing with feathers has turned out to be my nephew. I must take him to a specialist in Zurich." And I would add, The thing with feathers is the back of a woman I saw in line at the Jewel. Her boyfriend tattooed wings on her shoulder blades. She offered me his business card but I traffic only in tattoos that are temporary.

The Never-Ending End

I'm through with chemo, through with cancer--but I'll never really be through with cancer. And right now I am still Her Baldness, to borrow a title from another chemo-head.

This morning I was on my way to meet a client at The Little Cafe when a young man on a bicycle asked me for directions. He wanted to know where the Howard Brown center was. I asked if he wanted the clinic or the lesbian-gay center (which doesn't have Howard Brown in the title), and he said the latter. I directed him--two blocks south and two blocks west, shiny new building--and he asked me about the message on my head. You must feel really strongly, he said. I felt unmasked. My head as canvas was a side effect, not a deliberate political act. I told him that I lost my hair from chemo. I started to feel that if I were really committed, I would have shaved my head back when I had hair. But I guess a button will have to do when the hair sprouts back.

I am still on the never-ending quest to get my port removed. It's taken a few phone calls so far, and I still don't have an appointment with Interventional Radiology, the people who insert and install and remove the ports. I had to go today to Fancy Hospital to get blood tests (three tubes) that will qualify me for port removal. One of the regular nurses who took my blood before chemo did the honors. She is especially friendly and also laid-back. She also remembers me, which I think is something, considering all the people coming through. Then, blood drawn, I went down to the fourth floor to get a routine MRI of the remaining breast. The sole breast. The surviving breast. The first two times I got MRIs I brought someone with me. This time it was just me and my generic Valium. I was able to sleep some in the MRI thing, even though it's very clang-y and buzzy. Before I went inside the machine, the tech needed to mark the places on my breast where I had scars, and she used Vitamin E capsules to do it. She just taped the golden ovals onto my breast. She said the Vitamin E shines up brightly in the pictures. I asked her who thought of that. She didn't know. When I told L tonight he said, To help heal the scars? and I said no, though I've read that Vitamin E does help scars fade. I'd forgotten they were there and one had melted by nighttime.

Afterwards, I checked my e-mail down the hall in a machine set up in a waiting area, and then went to WRU to photocopy some handouts for an upcoming class. I saw H there, who mans the desk in the hallway. I told him I was through with chemo. So you're in remission? he asked. I guess, I said. Just like I hadn't thought I was a survivor yet, I didn't think I was in remission yet. But I guess I am. Which scares me because J, the son of B and S, was in remission. And then his cancer came back.

I stopped in at B's tonight. He was in the midst of moving himself from one mechanized wheelchair to another. He fell. It took quite a while to get him from the floor to the sofa. He can move his arms and hands but he doesn't have much strength in them. His legs are dead weights. He told me that Kelly the Irregular had called to say she couldn't come tonight. I said, I'm not going to help you get ready for bed. I keep telling him he has to hire someone better. He says a reliable service is too expensive. I figure if we don't help he'll be forced to hire someone else. L came over later (he was at Soldier Field to hear the Democratic candidates) and we moved B to the chair. I relented and we were going to help B go to bed but he wasn't ready. He wanted to watch Jon Stewart (nee Jonathan Stewart Leibowitz). So we didn't. We shall hope for the best.

He has the kind of MS that just gets worse and worse. There is no remission. His wife S has put him on some supplements, which seems to make him more alert. The doctor says the disease is eating up his spine. He has pain and spasms and his legs shake. I said, You still get pleasure from life, don't you? He said he does sometimes. He said when he wakes up in the morning he doesn't hate the fact that he's still alive.

I will get the results from the MRI in a few days. I need to remember that there are often false positives with the MRI. That's the origin of two of the scars: core biopsies taken earlier this year, which proved to be negative for cancer.

A quote from Her Baldness, on chemo: "Something has broken into your body and it has murder on its mind."

Two Glimpses

I was at a dinner about 10 days ago and someone asked me, Are you a survivor? It took me by surprise. I said, I guess. I guess the cancer has been excised and I've survived. But it seemed sort of premature. On the other hand, why not? I'm sure there are even some people out there who don't survive the surgery because of some freak reaction. So I'm a cancer survivor.

That night after the dinner L and I were on the L and we sat down next to a young woman. She said to me, You look great! Or: It looks great! I forgot which. She looked very young and blonde and had a Southern accent. She had a big suitcase in front of her. She asked if I had cancer and I said yes. She was going to a gathering for a friend who was getting married. Instead of a wedding shower, a bunch of her friends were getting together with her for the weekend, in Chicago because it was central. The friend had gotten breast cancer at 27 and was doing fine now. She'd noticed a lump. We talked about how women are told to get mammograms at 40, and how unusual it was for a young woman to find a lump. The woman's fiance had been great, the girl told us. I felt instantly at ease with her and felt that we could talk about cancer forever. She missed her stop because she was talking to us. And then she exited at Belmont and her friends picked her up. I didn't say that the younger you are when you get breast cancer, the more likely you are to have a bad prognosis.


I woke up today without a quaver in my voice or in my chest. Yesterday and Monday I could feel the quaver, the tears, as a liquid entity, filling ligaments or pipelines, or something, across my chest. Like they were there, an unending supply, and it wouldn't do any good to cry them out because there would be more. Yesterday I could talk but if it was about anything remotely personal (how do I feel, what am I thinking) I was weepy weepy weepy, weeping. My friend S, who was visiting from San Francisco, said just to cry, but see above. We went to Thousand Waves yesterday to get massages. Mine was free as part of the spa's lovely Stress Management Program for women with cancer. She paid retail for hers, and she paid for my massage therapist's tip, as well. We were going to go to Gilda's Club next for a new member orientation, but I felt I couldn't deal with it. Meaning I couldn't imagine sitting around and talking to people. I called to cancel. When I'd called to enroll earlier in the day, the intake person asked why I was interested, and I said I was desperate. When I canceled I was still desperate, even more so.

We went to Dairy Queen then came home and watched Breakfast at Tiffany's, which was very different from the way both of us had remembered it. I'd remembered it as some sort of Barefoot in the Park, with Holly Golightly appealing to some stodgy guy to eat breakfast among the diamonds with her. I'd also been under the influence of the purity of the character she played in Roman Holiday, which we'd watched the night before. In Tiffany, she's a Southern girl who reinvented herself (with help) in Manhattan. She's less waif and more gold-digger. Mickey Rooney is cast, disturbingly, as a Gnashing Oriental neighbor. The role is stereotypical and crass.

When L came home we made a tray of whole grain bread, cheese, fruit, hummus and olive tapenade and watched But I'm a Cheerleader, a very light movie about a high school cheerleader who's not hetero enough for her Christian parents and her friends, so is sent away to rehab for straightening. Of course she emerges with a lover. Happily, parents accept her back. I was in the mood for light movies.

Still I was weepy. My sister called during one of the movies and I told her how weepy I was and she said I had been so strong before. Everyone has the impression that I've been Strong and Courageous. But I don't know what means. I just hadn't been weepy much before.

Audrey Hepburn was English-Dutch, born in Brussels. Her English father walked out on the family. Both parents were Nazi sympathizers, but after her mother moved the family (unclear if there were other children and I don't want to take the time to check) to the Netherlands, and saw her native land invaded, the mother soon supported the resistance. According to some accounts, Hepburn saw the execution of her uncle for his resistance work, and saw Jews executed in the street. She studied ballet and performed in concerts to raise money for the resistance, and was also a courier. During the famine toward the end of the war, she suffered with the rest of the population, subsisting on tulip bulbs and grasses. This may have affected her metabolism.

Except when she was pregnant, she kept herself down to 103 pounds. She was five-foot-seven. In 1987 she became the UNICEF goodwill ambassador, and died in 1993 at age 63 of colon cancer, by some accounts, but it may have been cancer of the appendix.

She was beginning her career when Colette spotted her in a hotel lobby and immediated cast her in the title role of Gigi in the Broadway production. (This is how such things are presented, as happening in a flash.) Hepburn was later, allegedly, offered the title role in the Diary of Anne Frank, but refused because she was afraid it would stir up too much internal trauma.