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 


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.