Will it never end?

There are so many things I do not know though I am growing old, Father William, but you would think such a person as I, so interested in my very self, would know something about that self in question. But I do not.


Tonight at rowing we did a circuit, I believe it's called, where we rowed as fast as possible for 500 meters on the rowing machine aka erg, then did some very silly things having to do with moving your legs like this and your arms like that and stretching like this and jumping your feet back and forth like that in a way that is very awkward and then going back to the erg to do it again, all the way through, and then back again. I say, If this does not fill you will the futility of life, then you're moving too fast. And I was moving that fast, though not as fast as anyone else in the room except a new recruit who looked older than I, and then I got overheated on the erg and felt like crying, and there was a time when I would keep going until I was weeping and would take a couple of hours to get over the weeping and feel that someone was clearly at fault, but not I, not I. Not me. Maybe two years ago I decided I would row until I felt like crying, and then stop, taking the crying as a sign that I had pushed myself too far, and so today I stopped and stood in front of the upright fan (crying a little) and then took my mat to the other end, over there, and did some sun salutations and Coach S complimented me on my downward-facing-dog (le chien tête en bas, as we said in French yoga), and I admit, I do a nice downward dog. The secret is to keep pushing down with what my Taiwanese yoga teacher used to call the back of the small, which was such an enchanting word switch that no one wised her up.

So was I overheated, because of the other other cancer? I don't know now. Maybe not. Then why did I feel like crying? What was the fear? Or was it discomfort? Or was it my body warning itself that it was about to overheat (what is that, really?) and become uncontrollably itchy? But my itching has been under control lately because I'm taking a higher dose of Jakafi and the temp is colder. When I truly overheat I feel depleted and weak and sometimes light-headed (am I making that up?) and so--should I keep going? I say no. The young coaches used to tell us not to listen to our bodies, that our bodies would want to stop when we needed to keep going, but I thought it was not good advice for a 25-year-old athlete to be giving to 50-year-old cancer survivors. Then again I'm not like K, who at least once has rowed so hard that she threw up. I am not willing to go that far.

Then again, if I stop before I am awash in tears, then the chances are that I'll be more predisposed to come back to practice. The thing, of course, is to get yourself not to cry, but how is that done, I'd like to know. I was doing the yoga to calm myself down, to take the tension out of the boat, as the Michigan coach says, and there was a time about six years ago when rowing hq was at the place before this place, and I pushed and pushed myself and I was crying and felt depleted and this same Coach S (who thought with J that I was uncoachable) said something about it being good that I was learning my limits. Or something like that. And here am I, who not a week ago was talking to another J, who was telling us about all the emotionally spent college students she has who are crying with anxiety and fear about getting everything done, and I said that crying was just an expression of feelings. Hah, the diminishment has come home to roost, has it not?

Black cohosh, welcome back!?

Cancer Bitch was sorry to say goodbye to black cohosh pills, which she had been taking for hot flashes way back in pre-cancer days. She said goodbye to the substance because it was deemed an aider and abettor of estrogen-positive tumors.


But--(and now I change POV) I just was looking up something for a friend who has a 91-year-old mother with breast cancer (Google: older women, Susan Love) and found this on Dr. Susan Love's site:

Black Cohosh

Black cohosh is an herb that has long been used by Native Americans to treat menstrual and menopausal symptoms, but its mechanism is not understood. More recently it has become popular in the United States as a suggested treatment for hot flashes. A study of Remifemin Menopause, made from an extract of black cohosh, found that 70% of the 150 peri-and postmenopausal women in the study who took 40mg of Remifemin for 12 weeks reported a decrease in menopausal symptoms, including hot flashes. The group taking the higher dose did not do better than the lower standard-dose group. There was no placebo group in this study to compare the response with.
Black cohosh may be a good option for some women. The advantage of it over other alternatives is that it doesn't have side effects, like clonidine and antidepressants. But it's also clear that more is not better, and that women who do decide to try it should stick to the standard dose.
The question for breast cancer survivors is whether it is estrogenic. On this front we actually have some data. First of all there is no known phytoestrogen in black cohosh. Second, there is no evidence that black cohosh binds to the estrogen receptor. Finally, in a petri dish, breast cancer cells were exposed to black cohosh in the absence of estrogen, in the presence of estrogen, and in the presence of tamoxifen. They found that the black cohosh given alone inhibited cell growth. When estrogen was added it blunted the growth usually seen and it enhanced the effects of tamoxifen. This effect has been replicated in four other studies on cell lines. Studies in women have confirmed this lack of estrogenic effect.
**
So--Good news and bad news. Good news is, of course, that I can get back on cohosh, which helped in the past. I am in the running for the hot flash world record. The flashes started at least a dozen years ago, and have been exacerbated by: menopause, Tamoxifen, polycythemia vera (You must have seen the commercials: "Polycythemia vera, the other other cancer," a direct copy of "the other white meat" ads. Nonetheless, it remains a rare blood cancer, and has not been taken up by the masses). Bad news, of course, is that women who are in menopause are "older." Older than what? Red dirt? I have news for Dr. Susan Love: Menopause Women are young, young. Who's older? Mothers. Mothers of Menopause Women. And don't you forget it.
***
But wait! Sloan-Kettering begs to differ, telling us ER+ Menopause Women not to take black cohosh if: You currently have, or have been treated for, an estrogen receptor-positive (ER+) cancer (It is still unclear whether black cohosh acts in the same manner as estrogen, and might therefore stimulate growth of these tumors)
Ugh!! I am writing to S-K for clarification and will report its reply.

Sharing the wealth

Good news! The National Cancer Institute gave a ton of money to Chicago to cut down on disparities in cancer treatment between the haves and have-nots. Though Cancer Bitch, being Cancer Bitch, wonders what exactly the education and outreach will be. Cancer Bitch participated in a study several years ago about community support, and could not imagine how that particular study could provide useful info to people. But she got a gift certificate for her trouble. She thinks. Ask her chemo brain. If we had universal health care, many disparities would melt away. And everything is so related. If the schools were better, kids would be prepared for jobs, and could get better housing and health care. (The is officially Old News, but Cancer Bitch just got word of it today.)

                                                        E. Madiba 20c South African woodcut; more info here. 

This is the press release: 

$17.4 Million Grant to Tackle Cancer in 

Chicago’s Lower-Income, Minority 

Neighborhoods

Award from the NCI to support partnership between the Robert H. Lurie Comprehensive Cancer Center of Northwestern University University of Illinois at Chicago and Northeastern Illinois University

A new $17.4 million grant from the National Cancer Institute (NCI) will help three Chicago universities work together with many of the city’s underserved communities to foster meaningful cancer research, education, training and outreach.
According to the Illinois Department of Public Health, Chicago communities that are low-income or predominantly African-American or Latino face cancer death rates up to double the national average.
The five-year grant will support the creation of the Chicago Cancer Health Equity Collaborative (ChicagoCHEC), led by researchers from the Robert H. Lurie Comprehensive Cancer Center of Northwestern University, the University of Illinois at Chicago (UIC) and Northeastern Illinois University.
The collaborative held a joint community kick-off event Oct. 23 at the Arturo Velasquez Institute in Chicago’s Little Village neighborhood to launch this initiative to help reduce the burden of cancer in low-income and racial and ethnic minority communities.
The effort is being led by community-oriented physician-scientists and researchersMelissa Simon, MD, the George H. Gardner, MD, Professor of Clinical Gynecology in the Department of Obstetrics and Gynecology at Northwestern University Feinberg School of Medicine; Robert Winn, MD, Associate Vice President for Community-Based Practice at the University of Illinois Hospital & Health Sciences Systems, professor of Medicine, UIC College of Medicine and Director, University of Illinois Cancer Center; Christina Ciecierski, PhD, associate professor of economics at Northeastern Illinois University; and Moira Stuart, PhD, associate professor of health, physical education, recreation and athletics at Northeastern.
“Despite the existence of five academic medical centers and millions of dollars spent on cancer research and treatment of Chicago residents, we are still only in our infancy in responding to cancer health disparities,” Dr. Simon said. “We have been working on setting the groundwork and assembling this grant over the last five years as a way to move forward and foster the wonderful work of communities and organizations already working towards improving cancer equity.”
UIC and Northeastern are two institutions with well-known track records of enrolling and graduating students from minority and nontraditional backgrounds and that have longstanding partnerships with Chicago communities. A major goal for the collaborative is to build bridges between the Lurie Cancer Center and UIC and Northeastern.
“UIC plays a unique role in this partnership,” said Dr. Winn. “We have seven health sciences colleges that will contribute to achieving the objectives of the grant, as well as a network of federally qualified community clinics, our Mile Square Health Centers, that put us in direct contact with patient populations on the south and west sides of Chicago, which are disproportionately burdened by cancer. Additionally, the University of Illinois Cancer Center is integrated into our Mile Square Health Centers, so we are well-positioned to make a significant impact on reducing cancer disparities.”
Ciecierski of Northeastern, a native Chicagoan and first-generation American, said she is excited to be a part of such an important collaboration.
“The goal of our partnership is to connect with all Chicago communities,” said Ciecierski. “We will use the tools of education, research and advocacy to improve health among Chicagoans, especially those chronically underserved. As an educator, I know that training and community outreach will spread good health to all Chicago neighborhoods.”
In addition to community and institutional partnerships, one area of focus for the collaborative will be research to improve cancer prevention, early detection, treatment and survivorship.
“The efforts of this collaborative will enable us to develop programs that aim directly at the cause of disparities and empower those who are most severely impacted by cancer inequities,” said Stuart, who is also of Northeastern.
The collaborative is the first of its kind established in the Midwest and already includes more than 20 researchers and educators from diverse backgrounds and academic disciplines across 14 departments in seven schools from all three institutions.
The activities of the Chicago Cancer Health Equity Collaborative will be focused on:
  • Establishing multidisciplinary research programs in cancer disparities, including those that incorporate biomedical, socio-behavioral, basic and translational science.
  • Mobilizing researchers, educators, community leaders, students, organizations and patients in innovative cancer education and outreach programs to improve health.
  • Providing training, mentoring and learning opportunities to recruit and retain minority and underrepresented students in health and cancer research careers.
  • Supporting the career development and advancement of minority and underrepresented faculty and scientists.
Leadership from the three universities share their support of this collaboration:
Robert H. Lurie Comprehensive Cancer Center of Northwestern University 
“We are making exciting progress in the war against cancer. New approaches are emerging in cancer treatment, screening and risk reduction, but not everyone is benefitting equally from these advances. This award will support our efforts as an NCI-designated Comprehensive Cancer Center to community outreach and to reducing cancer health disparities in the communities that need it most.” — Leonidas Platanias, MD, PhD, Director of the Lurie Cancer Center
University of Illinois at Chicago 
“We have a strong commitment to serve our community and the needs of our students. This partnership expands on opportunities to educate and train a pipeline of minority and underrepresented students who are interested in pursuing health-related careers and develops a diverse workforce to meet the nation’s biomedical, behavioral and clinical research needs.” —Michael Amiridis, UIC Chancellor

Northeastern Illinois University 
“We are so pleased to be able to continue our partnership with the Lurie Cancer Center and to add UIC to the very important partnership that began five years ago. The focus on cancer health disparities in underserved communities fits well within the mission of Northeastern. The work that we’ve done together with Dr. Simon’s team for the past five years has resulted in foundational research and scholarship by faculty and students from both universities. This grant provides a unique opportunity to build on this work toward a more comprehensive approach to addressing the critical need for cancer equity.” — Dr. Maureen Gillette, Dean of Northeastern Illinois University's College of Education

Nicole Xylouri Osborne

Maybe a couple of you have met my former student Nicole, who came with us to the Recovery on Water fundraiser a couple of years ago. Nicole studied fiction writing at Northwestern and then left Chicago to get a master's in education at U Penn, then returned to work in administration at the Illinois Institute of Technology and the School of the Art Institute of Chicago.
She got in touch when she was diagnosed with breast cancer. I decorated her head when she was bald the first time. My mother visited her when she came to M.D. Anderson in Houston. (Her own mother embarrassed her, she said, by accosting young doctors who weren't wearing wedding rings in the hospital elevator and introducing them to Nicole, who invariably was wearing a hospital gown, ) Recently Nicole was on the comedy circuit: Breast cancer patient Nicole Osborne turns illness into punchline
A mutual friend just told me that Nicole died two days ago.

Now is the point where I should say something about lifting a pint and saying something or other. The best I can do: In her honor, tell a joke, a joke with a hard edge, one that acknowledges death peeking around the corner, but makes you laugh nevertheless. .


Another reason to think before you pink

For some reason the very nice post I posted here has disappeared so I will recap it very very quickly. Gregory Karp of the Trib reported that it's not worth it to get an affinity credit card with a pink ribbon or other charitable logo on it. It may make you feel good but the amount that is donated to the charity will not be much and it would be better to get a rewards card and make a (tax-deductible) donation from that. He got in touch with the Susan G. Komen Foundation, which keeps trying to make us aware of breast cancer and is unthinkingly right-wing in its politics. "The cards are free to the consumer, and give them an opportunity to show their support for the breast cancer movement and generate a donation to Komen at no cost to them," Komen spokeswoman Andrea Rader said.
Those donations of 0.08 percent add up, generating more than $6 million since 2009 for investment in research and community outreach, she said.
Komen is better than it used to be--it does give money to research, but I remain skeptical of its community outreach. Especially because some of this outreach means to get cozy with fracking, strange as it may seem. Or you might decide you'd rather donate to the Bad Girls of Cancer, Breast Cancer Action.

The one line to keep on your typewriter

or computer.
I made L listen to me as I told him about the trouble I was having with my essay on Mixing. It's about:
-the use of the term "mix" in describing the missing Goodman, Schwerner and Chaney 50+ years ago; they were a "mix trio," meaning they were anti-segregationists
-a booklet that was published in 1864 on Miscegenation, advocating it and at the same time inventing the eponymous term,
-the nefariousness of the aforementioned booklet, which was written anonymously by two Democratic anti-Lincoln newspapermen who aimed to get Republican anti-slavery endorsements so that they could expose the Republicans as race mixers

-L's essay in high school about race, which advocated race mixing in order to extinguish racism, and the comment from his instructor: What if your daughter married one?
-the marriage of the daughter and the son to African-Americans, and a cute but important dialogue in which our grandson says he is mixed with pie, which his father interpreted as a mis-hearing of the term "bi"
-self-critical and raw statements by Toi Derricotte from "The Black Notebook"
-the electrocution of Willie McGee in Laurel, MS, for raping a white woman; they probably had a consensual relationship
-the charges against the white racists behind the triple murder, verdicts, and further verdicts
-and overall my snarky superiority to the racists, which is pretty easy and probably unfair because their actions were 50 and 150 years ago & I'm not talking about now very much & they are such easy targets

He asked me what the point of my book was and after some more talking I came up with this:
...that slavery and the Civil War are part of everything in present-day US, whether we're aware of this or not

So that is what your piece is about, he said, and again he recommended I read a book of his, White Over Black, and this time I listened to him. It traces the beliefs about and prejudices of Englishmen toward Africans from the mid-16th century through early 19th. The germ of current racism is there and I'm reading it with interest, lamenting how unschooled I am in this.Asking myself if I should get/ should have gotten a PhD in history a dozen or so years ago, but knowing that I would have been impatient with having to do work assigned by others.

My one line to remember/elevator pitch is not quite gainly or subtle but it captures broadly what I'm doing.

The Discreet Charm of the Bourgeoisie's Lingo

In the few months I have been on Jakafi, I've had bronchitis twice, throat fungus once, and stomach flu, also once. The other night I said to L. I need to get back into the mode I was in when I was on chemo (for breast cancer)--sleep a lot, stay far away from people who are the least bit sick, and be super-vigilant about exposure to germs. Example from bc-chemo: I was at a cafe and ordered a sandwich at the counter, and saw the sandwich-ista was handling everything--no gloves or anything. (I already sound like a nut, right?) and I said, Excuse me, but I'm going through chemo, and I'm very susceptible, could you please--what did I ask her to do? She either had plastic gloves back there or not. Maybe that's not a good example. What I wanted to show was I had to overcome embarrassment in order to protect myself. I recalled that the plastic bag that the bottle of Jakafi comes in says CHEMOTHERAPY in scary zig-zag letters, or there is something lightning-boltish about the warning. So I legitimately am in chemo. Going through chemo. What is the correct verb? I arrived in Arizona yesterday for the Nonfictionow Conference, and I wanted to skip a group dinner, but I didn't. It was fun (though the food at the Dreary Inn is twice the price it should be and one fourth the quality) but I would have been better off sleeping. I slept late and ran into the conference organizers in the very cute Matador coffee shop across the street from the hotel, which is somehow encompassed by Northern Arizona University, or NAU ("gnaw"--the mascot is a beaver chewing on a log) and R asked if I had gone to a morning panel. I said, No, I had to sleep, I'm in chemo, but so that he wouldn't be alarmed, I said, but it's good chemo.
Why do I need to keep people from being alarmed? I do have this fucking incurable and rare blood cancer. It's not the hair-falling-out chemo but it is the suppress-your-immune-system chemo. Suddenly, if I convince myself that I am indeed going through chemo, then my world-view ( Weltanschauung) and my priorities shift: My goal becomes making sure that I don't get sick. I suddenly have the right to that goal. And everything else follows from that.

Nonfiction Now: You Lived Through It; Do We Have To Read About It?

If you'll be in Flagstaff, we invite you to come to our panel at 9 a.m. Saturday, Halloween Morn, in Doyle at the conference center. You are encouraged to wear your pajamas. Lost your schedule? Click here.

[Just roll right out of bed and come on down.]


Here's a description of the panel.
Much has been written about the therapeutic benefits of writing and art-making for survivors of traumas such as war, disasters, slavery, disease, rape, incest. In other words, the writing is generally agreed to be good for the mental health of the amateurs. What about those of us who call ourselves writers? When does nonfiction writing about trauma rise to the level of art? What makes some artful, and others, self-serving and irrelevant? Of course the answers are subjective, but we will explore the questions and hazard some answers. Speaking as writers, readers, and editors, we will examine successful and unsuccessful creative nonfictions and tease out our reasons for making those judgments.

These are the authors and works we are quoting in our presentations, as well as other recommended works. Also included are links to books we've written.

Jane Hirschfield, Given Sugar, Given Salt
Dani Shapiro, Still Writing
Lucy Grealy, Autobiography of a Face
Gregory Orr, The Blessing
Richard Hoffman, Half the House
Kathryn Harris, The Kiss
Janice Gary, Short Leash: a Memoir of Dog Walking and Deliverance

Joan Didion, "Goodbye to All That" in Slouching Towards Bethlethem
Toni Morrison, "The Site of Memory" in Inventing the Truth: The Art and Craft of Memoir, ed. William Zinsser
Frederick Douglass, Narrative of the Life of Frederick Douglass, an American Slave, Written by Himself
(Note: There are various versions of his autobiography.)
Judy Ruiz, "The Mother, the Daughter, and the Holy Horse: A Trilogy," Iowa Review vol. 23, no. 2
S.L. Wisenberg, The Adventures of Cancer Bitch book
audiobook
Holocaust Girls: History, Memory & Other Obsessions

Recommended:
Alfred Doeblin, Destiny's Journey
Raymond Federer, SHHH: The Story of a Childhood
Stanley Elkin, "Why I Live Where I Live" and title essay, Pieces of Soap
Janet Burroway, Losing Tim: A Memoir
Audre Lorde, The Cancer Journals
An Interrupted Life: The Diaries of Etty Hillesum


Elizabeth Kadestsky:                                                                                                                                          Judith Herman: Trauma and Recovery
Ben Yagoda: Memoir 
Cathy Caruth (essays by Dori Laub and Cathy Caruth in) Trauma: Explorations in Memory
Joan Didion: The Year of Magical Thinking
Simone de Beauvoir: A Very Easy Death
JoAnn Beard, The Boys of my Youth ("Fourth State of Matter")
Maggie Nelson, Bluets

Recommended:
Carlo Levi, Christ Stopped at Eboli
Sarah Manguso, The Guardians 
Sophie Calle, Exquisite Pain
Elizabeth KadetskyThe Poison that Purifies You 
On the Island at the Center of the Center of the World 
First There is a Mountain: A Yoga Romance 
facebook.com/ekadetsky

Die Welten

It's interesting (to me at least) how we (I) try to find the logical roots of Symptom. A bad headache: not enough sleep. Caffeine withdrawal (though not enough time had passed without it to constitute withdrawal). Heredity: O this dizziness is what my mother goes through with her vertigo, dormant for ten years until late this summer. Power of suggestion: the nurse at the oncologist's on Wednesday went through my medications and symptoms. Dizziness and nausea? she asked and I said no. But then here they were, the very next day. And then when it becomes clear (Mayo Clinic on the internet) that I have "stomach flu" or gastroenteritis, another hunt for etiology: the River (but we rowed down a cleaner part of it on Wednesday night), lowered immune system because of the new drug Jakafi--which handily leads into my world view, my Weltanschauung, which is Weltschmerz--from every good (new drug) flies a corresponding and ironic bad.


(Cemetery, Basking Ridge, NJ, where we went for my cousin's wedding in late September. Tombstone standing in for the glass the groom stomps on: sadness and broken things in the midst of happiness and beginnings [let's ignore the obvious sexist connection to the breaking of the hymen])

Welcome, 5776

Greetings, those of all religions and those of no religion. I guess I'm both, though I observe some holidays. Rosh Hashanah began Sunday night--so Sunday night was our new year's eve. We don't set off firework but we do eat. Of course. In our Ashkenazi (European) tradition, we eat apples and honey, because that's what you could get in early fall in Europe, from Russia to Great Britain. Those in the Sephardic tradition eat dates, beans, leeks, beets, pomegranates, as well as apples. They also hold up the head of a ram or fish and say, May I be a head and not a tail. Raise your hand if you do that. I would do it if I could borrow a ram, head still connected to its neck. But I don't think that's the point. Maybe vegetarians could hold up a head of lettuce. At least that's something positive that you could do with iceberg. It has no other function--contains a bit of crunch, is devoid of nutrients.
[What, me worry?]

But let us continue. An important aside: You will read that Ashkenzi Jews are those from Eastern Europe. This is usually wrong, and it matters when you're talking about diseases we Ashkenazim are more prone to because of all the inbreeding. The Sephardim are from Spain and Portugal, which outlawed Jews and Judaism just as Christopher Columbus (whom some claim was Jewish; why that first name? Trying too hard?) was sailing the ocean blue. (In 1492/ Isabella said, Get out, O Jew!) Those who did not leave either converted sincerely or insincerely. Just for good measure, the Crown and Church launched an Inquisition. In his photography book on Sarajevo, Edward Serotta has a photo of Sarajevo Jews holding aloft their keys from Spain. They kept them in the family all these years. Which is a good thing, because now Spain says that if you can prove that your Jewish family was forced to leave, you can claim Spanish citizenship. Which opens up the whole of Europe for you. Perhaps that's the best route to go for Syrian refugees.

Sephardic Jews speak or spoke Ladino as a lingua franca. Ladino is to Spanish as Yiddish is to German. (Memorize that, it will be on the GRE.)  Both written with Hebrew letters. Some German Jews will tell you that they are not Ashkenazi, and if they can trace their roots to Spain, they're correct. But often they're just ignorant. They think that Ashkenazi means Eastern European, which in the 19th century especially meant poor, immigrant religious Jew who embarrassed the cultivated Goethe-spouting German Jew. If your family spoke Yiddish, no matter how many generations back, then Congratulations, you have breast cancer. Not definitely. But you have a greater chance of carrying the BRCA gene mutations. If you just clicked on BRCA, you will see that the Breast Cancer Resource Directory of North Carolina* refers to Ashkenazim as Eastern European in the title of the BRCA entry. It does clarify: mostly Jews from Germany, Poland, Russia. And the North Carolinians are correct in saying that 90 percent of US Jews are Ashkenazim. The rest are Sephardic, originally from Spain, France, Italy, North Africa, according to NC. I would add: Turkey, Greece (any who remained after Kurt Waldheim helped murder most of the Salonikan Jews), Holland, West Indies, Bulgaria (who saved its Jews, while throwing those from Macedonia and Thrace to the wolves), parts of the former Yugoslavia. Britain, friendly Britain, did not let us in for centuries. And then when Jewish war refugees started coming across the channel from Germany and Austria, the kindly Brits put them in camps alongside Nazis. Ach, they all sound alike, no?  Perhaps the Brits should be forgiven, since so many German Jews identified with Germany over Judaism. Which gave rise to this joke: Two German Jews have escaped the Nazis and are in exile in Paris. It's early 1940 and they're watching the French army go through maneuvers. One says to the other: Ach, our army is so much better. 

Meaning the German army. 

Get it?

But the point. The point is that I went to services Monday and then to the lake for tashlich, where we throw our sins into the water symbolically. 
.  
We used to look like this:

but now we look like this:


People usually throw in crumbs or pocket lint (there was a discussion Monday of belly-button lint)  I threw in weeds. I narrowed my sins to two: grasping and complaining. I chanted to myself that I was giving them up. No grasping, no complaining.

And so I could not complain, about people or situations. It has been very difficult. (I am stating a fact, not complaining.) I really really wanted to tell L. about a conversation I had with someone who is more neurotic than I am, and kept repeating himself, and worrying about a teeny tiny thing, and the point would be that deep down I'm saying, I'm not so bad, look at him, and there would be ever-so- slight contempt in my gut and face. But because I couldn't tell him, I didn't have that patronizing feeling. O, I had it for a moment, but it kept disintegrating. Which is a good thing. As for the grasping--that is more abstract, and I find that it is harder to avoid.


__
*Why pick on North Carolinians? Because their site came up when I googled the key words.

The Bitch Laments


Sometimes you just hate yourself and there’s no escape.
You do something that you know how to do but you’re distracted. You’re sick you go to the doctor get the official diagnosis the official antibiotics but still a piece of writing is due. You’re not exactly sure when. You turn it in late. You don’t know this editor and he doesn’t know you and it was a chase, and not a merry one, to even find out if he wanted you to write this. And the ifs start piling up—if he had gotten back to you even a week after you first contacted him, you would have had maybe three times as much time to work on it. If you hadn’t gotten sick. You didn’t have fever, so you can’t say you couldn’t pull yourself out of bed. You didn’t have that fever headache nightmare feeling that’s such a relief to lose when your temperature falls. Then you leave town to see someone who is sick, and you are worried and hysterical and it is partly because you didn’t have enough sleep, and you’re hoarse and is that from coffee in the morning or something as common and coarse-sounding as post-nasal drip? If so then what’s the good of those two nasal sprays, isn’t that what they’re supposed to cure. You have too much coffee and not enough sleep and the person you came to see is worried, upset, very upset and frightened and you try to be reassuring you try to acknowledge the fear the apprehension and to hold back your hysteria. And before and in between all this you get the piece of writing back and it’s in Track Changes, which you hate. Your eyes can’t focus on something that’s there but you’re supposed to ignore, if you’re supposed to ignore it, why is It still there, in some stupid color that isn’t even a real color, like cyan. When did the color spectrum suddenly produce cyan? What’s next, what other half-poison word is sniffing around on the horizon? Merc? Arsen? What poison suits you today? All poisons suit you today, you would snuff yourself out if you were the self-snuffing-out kind. The piece comes back with 71 or 98 comments in those balloons, and there are paragraphs in all kind of colors and when you print out only the black font shows up. All the colors become white, like secret script you wrote in lemon juice when you were little, which become visible when you hold the paper over and candle and don’t set everything afire.

There are many questions and many comments and there are the same comments over and over on the right margin. And you can’t make changes in the piece itself, you don’t know how it’s done, so you make the changes inside the little comment balloons, as answers then at some point you realize you can write just on the piece itself. It turns out you are writing in a shade of maroon or brown-pink and half the time it’s stricken out and it’s tedious and exacting to get rid of the line-thrus. Then you end up rewriting what’s in sentences already because they have the line straight through them. And the comments, oh the comments in the little balloons are, This is strange. And: non sequitur. And where are we? And, This is very strange. No it’s not strange. And you know you can be sloppy you are sloppy right now and there are pages and pages of interviews you much go over in order to double-check, you have the pages in file folders you brought on your trip. You send the whole thing back and you don’t take out the comments that are really changes and substitutions though they appear in the little comment balloons on the side, you figure in the interest of time, you must send it back. Then there’s the phone call from the person you never met who says, I wrote 98 comments and you didn’t make changes and you say like what, like what didn’t I change? And he says, like this, and you say, oh yes, I did make changes this is what I said, only I wrote it in the little balloon because I couldn’t write it exactly onto the piece. And he tells you you can write it exactly on the piece, and you say I know now I got it to work but because there was not much time left I didn’t go through it again and move the comments from the word balloons onto the piece itself. And he says you write it right on the piece itself and you say I know I got it to work but not till part-way through it. He spent all this time, I spent all this time he says writing comments in the little balloons and you didn’t make changes. Then you kind of yell for a few sentences because you are out of town and trying to provide succor for the sick and you say I’m not trying to fuck with you and I didn’t make up that I had bronchitis last week and I am away this week, it sounds like what a person could make up but I didn’t. He is miffed, his ego is bruised it is battered, he spent all this time!! on the comments and you didn’t make changes on the piece itself. Which you can do—right on the piece. I know you said again again again but it didn’t always work and he said all you do is and you say again And you say you created error in some of your edits and you say I like to get edits back from editors I like to find ways to improve but you are sure he thinks you are lying. He says did you open it in Word? You did but the first time you opened it in Word it had a whole margin of the same same comments, a zoo of comments. You say to make it simple I can just cut it to 800 or 1,000 words and it can be clean and neat and he says no there are some good things and I spent time on the comments I spent time writing the edits but the truth is he spent too much time, to write comments in the little balloons is inefficient you hate Track Changes you just write comments in caps. Or by hand and then scan and send. Time is running out you are waiting for the valet to return with your rental car and you have to stop at whole foods for provisions for the ill. He says it’s up to you to do what you want with it and he is about to throw up his hands he is losing hope is that what he said? He is losing hope in the piece. You have lost hope in yourself. You feel as if you are 16 and have never been paid for your writing, you didn’t feel this bad when you were just starting out with this self-same publication with a gruff editor back in the days when you would take your file folders in a box to the office and go over your story together. And the old editor said, What is this about the Continental Congress? And he was right, that’s not what you meant.
                                 [I make big money on royalties. This is from my Cancer Bitch book.]

Why do you try to do journalism after all and what other way is there to make money from writing, and besides it’s less money way less money than it used to be. Fie fie on you Craigslist who eviscerated classified ad sections around the world the entire world or at least the Earth. Writing book reviews makes you nervous, even more so than journalism and you are thinking of getting back to writing book reviews and you have a personal essay with another editor who will never ever get back to you he is fighting a war of attrition he is hoping for your attrition. That you will fall away like an outer leaf and outer sepal. Because you were hoping to make some money and so your wrote an essay that seemed mainstream to you and he this other editor is afraid of it, what is it, is it standup are the little segments too surprising for his gentle reader. Despair this is. And go back to writing for nothing being published in what used to be called the little magazines, you publish in them for nothing and you make no money from the books you write but after you write them there are universities that pay you a thousand dollars and travel expenses so that you will talk about this writing that makes no money to students paying thousands. How can you sustain. How can anyone. How can you be so fat if you’ve lost five pounds. How much did that breast weigh anyway? Shylock’s pound of flesh. Like death and more death. Mortification. Mortify and mortified.
*
The pieces I wrote, for the Progressive online and Chicago Reader online. 

For metastatic breast cancer survivors

There are not that many perks that come with having metastatic breast cancer. This is one of them: You can learn to row and have a free lunch. If you like rowing, you can join Recovery on Water, my rowing team in Chicago.

Metastatic Breast Cancer Learn to ROW @ LPBC

Sunday, August 23, 10 am to noon, free lunch to follow

A FREE learn to ROW event for Metastatic Breast Cancer thrivers hosted by the Lincoln Park Boat Club, 2341 N Cannon Dr, Chicago, IL 60614

Metastatic breast cancer, also known as mbc, stage IV or Advanced Breast Cancer, is cancer that has spread beyond the breast and lymph nodes under the arm. The most common sites of metastases are the bones, lungs, liver and brain.

Given that the metastatic breast cancer community is smaller than the larger and more general breast cancer community, this event is SPECIFICALLY for survivors, thrivers, patients, and fighters of metastatic breast cancer.

We will teach you how to row at the Lincoln Park Lagoon from 10 am to noon, followed by a free lunch provided by Recovery on Water (ROW), a rowing team for those treated for any kind breast cancer.

Sign up here.

Guest post: How breast cancer survivors transcend Middle East conflict

by Ruth Ebenstein
 Ruth Ebenstein, Oak Park Temple, July 12, 2015              photo by Matt Baron
 
 
 

I never thought something so good would come out of something so bad.
When I was diagnosed with breast cancer at 42 while nursing my baby, I thought, I'm going to die. I had buried two other friends to the disease. Was there any other trajectory?
The pathology report on the lymph nodes scooped out of my armpit confirmed that the cancer had NOT spread. Though blessed, I lumbered around, all dark and down, in my apartment in Jerusalem. While my lumpectomy scars were still healing, I gritted my teeth and walked my fingers up the wall, stretching the scar tissue under my armpit.
Then, on a rainy Wednesday in January some four and a half years ago, I took a break from my exercises to check my email. There, I found a query that radiated a glint of light.
"Do you want to join an Israeli-Palestinian breast cancer support group?"
Walking into the first meeting, I wondered, Was something good going to come out of cancer?
The answer turned out to be No. Something wonderful was going to come out of cancer: friendship that grew to love, between me and Ibtisam Erekat, a bold, captivating Muslim Palestinian woman from Abu Dis, whose home was about fifteen miles away from mine.


                  Ibtisam & Ruth
 

Now we are like sisters. our feelings of family have extended to our kin. Our children play together, and we've befriended each other's siblings and parents. All this, even though we live on opposite sides of the concrete separation wall and a checkpoint that separate Israel and Palestine.
Over the next two weeks, I will share this story--of transcending the divide, of discovering hope, peace and love in cancer-- in Boston and Detroit.
Wednesday, July 15, 6:30 p.m. at Misselwood Estate, Beverly, Massachusetts, sponsored by CJP's Women's Philanthropy
Monday, July 20, 12 p.m. at Temple Israel, West Bloomfield, Michigan
Thursday, July 23, 7 p.m., at Isaac Agree Downtown Synagogue, sponsored by Detroit Interfaith Outreach Network
Come join me! I promise to feed your heart and your mind.
***
 
 You can read more of Ruth’s story here:
About a trip that a delegation of her group took to Bosnia and Herzegovina to meet local women who are also survivors and look past their ethnic and religious differences to support each other, in Tablet.  http://www.tabletmag.com/jewish-life-and-religion/113749/brought-together-by-cancer
 About a family visit to East Jerusalem, in the Atlantic.
She is writing a memoir called  Ibtisam and I: An unexpected friendship across the Israeli-Palestinian divide (www.laughthroughbreastcancer.com).
 And, you can "like" the Facebook page that she’s set up for her memoir-in-progress. 
For more info, check out her website.

Bloody Blood Cancer Bitch: Jakafi hath arrived/Cancer Bitch hath, too, in Tampa.

My hematologist filled out the forms and Walgreens filled out the forms and on Monday L rode his bike to Fancy Hospital Walgreens and picked up the goods. Today is day 2 on Jakafi and I just arrived, Jakafi in hand, in Tampa. I'm doing a craft seminar and reading today at 4pm, Reeves Theater in Vaughn Center, University of Tampa, for the low-rez MFA program. Free to the public.

OMG

OMG OMG. There is a goddess who watches over people with rare chronic blood cancers. Co-pay for a month's worth of Jakafi is two sawbucks, or one Andrew "I killed Native Americans" Jackson, or 2000 pennies. Quite doable and $10,080 less than I thought it would be!
 
Trail of Tears, brought to you by the US government/Andrew Jackson

Sticker shock shock shock

Jakafi costs


$11,000 for a month's supply! My insurance company is supposed to call me. We shall see.

Jakafi, will you save me?

 
 
Today L went w/ me to the hematologist's because I wanted him to be around for the momentous decision. We recounted my itchiness and the doctor said she thought Jakafi would help. It's usually prescribed for people with polycythemia vera who have enlarged spleens. My spleen is a very nice size, unobtrusive. But it is supposed to work on itches. Or pruritus, its proper name. Sounds more serious. The pruritis has made me cautious, given me more of an excuse not to exercise, since sometimes exercise in warm weather can lead to almost unbearable pruritis. The etymology of the word is not very interesting at first--it comes from the Latin pruritus, past participle of prurire "to itch"--but then you can go to prurient, which is related, and it gets lots more interesting. Prurient originally meant "having an itching desire" (1650s), and then became more louche--especially "lascivious, lewd," (1746),  The Oxford English Dictionary tells us that pruritus means "Itching of the skin or other surface. Also fig.: a strong desire or craving." As in the line surely you've heard at Whole Foods, "I sure have a pruritus for that spirulina!" Or the anonymous phone call I got recently: "I've got a pruritus for you that just won't quit." I almost responded, "Then let him out!" the way I do when they ask if I've got Prince Albert in a can. Glad I didn't.

The Melancholic, according to the system of four humors:
  • Humor: Black Bile
  • Element: Earth
  • Season: Winter
  • Age: Old Age
  • Qualities: Cold & Dry
  • Organ: Spleen
  • Planet: Saturn

 by Durer

 


Bloody, Bloody Cancer Bitch Comes Out

 
...which is not exactly the topic at hand, but somewhere in the ballpark...closer than Bloody Bloody Andrew Jackson...

Dear folks out there in Cancerbitchlandia,
I'm in a rowing group for breast cancer survivors, so it's selective, as in you must have that one basic criterion, but it's unselective because once you show up they can't kick you out for your athletic performance or lack of. I have recounted some of my problems with polycythemia vera. It's especially annoying when I'm in a warm place and I'm exercising, so my blood is running around and stirring up the histamine (or something along those lines) and I get very hot and very itchy or sometimes feel like someone is sticking pins in me:
Until very recently I would get really upset because I didn't stop before this happened, and when it happened I felt so embarrassed and angry and alien. But. I decided to email ROW members. This is what I wrote:
Dear everyone,
Some of you know about my weird blood disease from reading my rant on Facebook. I thought since it affects how I am at practice, I should let y'all know about it and me.
I have polycythemia vera, which means I have too many red blood cells and platelets. It is caused by a gene mutation called Jak2.
I take oral chemo, which doesn't cause side effects (so far). Other people get enlarged spleens from the disease, which is a chronic cancer. Luckily, my spleen is a good size, but I have severe itching. In fact, itching after a shower is one of the symptoms that people notice before they're diagnosed. The disease causes histamine to go crazy. Thus if I had no treatment at all, I would itch/feel like someone was pricking me with pins/ constantly.
To combat the itch, I take a 24-hour antihistamine once a day, and generic Atarax from 3 to 6 times a day. I drink coffee (which I like) to keep awake. When it's really bad, I take Emend, off-label use. I try not to take it much because it costs $7/pill and insurance pays for a limited supply, and no one's studied the long term use of it. In fact, it is not intended for long term use. I also get phototherapy two to three times a week. In winter I'm usually good. The problem is that whenever I'm warm I start itching more. So if I'm on the erg and it's warm and I'm warm I might have to slow down before I get so hot that I start itching uncontrollably. I've always been very allergic, so for 50 years I would respond to mold and pollen by getting asthma. (I take a bunch of meds for that, too.) But with polycythemia vera, my skin reacts to allergens, which means I itch and itch. And get asthma/stuffy nose as well. PV also causes night sweats and day sweats, so that it compounds hot flashes.
So if you see me hugging the air conditioner, or leaving a place...or slowing down when everyone else is pounding away at the ergs, it's because of polycythemia vera.
There's one new drug that I might start, but it's for extreme cases. 
It's all disturbing and confusing, though I've gotten to the point mostly where I no longer freak out with the severe itching, or start weeping and feeling terribly sorry for myself and alienated from everyone and the world at large.
So that's that.