Giving Thanks

The mesothelioma folks asked me what I'm grateful for. I told 'em:
I am most grateful for my Blue Cross Blue Shield health insurance. I get it from my husband, who worked for a union as staff.
We went out for nine years before we got married, and I was diagnosed with breast cancer three years later, and with blood cancer (polycythemia vera) not much after. I had a mastectomy and chemo at a place in Chicago I call Fancy Hospital. My hematologist is also there, and I’m on a new pill for my polycythemia, called Jakafi. Retail value is more than $10,000 a month – I pay $20.


Hi, blog readers. I've moved on to other things, but sometimes ya just gotta write about being one-breasted. 

Did you click on "write about"? That's what you're supposed to do. Or you can click underneath my photo.
Underneath, or au dessous, as we say in the French, since this shows me sans sein au bord du Seine.

Love,
Cancer Bitch

francais

So proud of myself--I had a phone conversation in French today, with someone at l'Alliance Francais, about taking the de Gaulle course instead of the literature class. I'm more interested in de Gaulle, though that's C-level, and I'm B-level, as is the lit class.
I listen fairly often to La marche de l'histoire podcasts on my phone. I understand between 40 and 70 percent, depending on the subject and how fast the guests speak. I was thinking last month or so that La march is just too hard for me, and I was listening to a show about Sainte Catherine de Sienne, and she didn't eat, and I was thinking to myself, Sounds like Simone Weil, and two seconds later, the host said, Like Simone Weil.

So.
I guess I can follow, at least some.

The Untimely Death of Stonewall Jackson

The Woman Who Could Not Take It Any More felt very very very very sorry for herself. The Woman Who Could Not Take It knows she is her own enemy, but not her own worst. That distinction set aside for old bosses. It wasn't that she didn't blame herself too. She imagines conversations with said bosses, none of which would end well, with power on her side. But that is not what this is about. This is about the $12,000 retail monthly medicine. And the dead friend who floats into her mind and stays and then leaves. There were no regrets when she died. But now. 
The Woman Who Could Not Take It Any More did not make sure that her hematologist approved the costly drug for six more months. The Woman Who Could Not Take It Any More also did not order her monthly Jakafi a week or so in advance. Because she did not do these things she spends four hours on phones and in the Walgreens at Fancy Hospital. The Woman has a few admirable traits. She can make the pharmacy rep laugh over the phone. We were not expected to have such interesting lives, her sister's junior high school friend writes to her on Facebook, probably 45 years after they have seen one another. There is sorrow throughout the land. The poor groundhog, dead in New Jersey Feb. 1. Why was he named Stonewall Jackson? The Woman Who Could Not Take It Any More saves her cousin from committing libel on Facebook. The Woman Who Cannot Take It Any More hangs up accidentally on the pharmacy-insurance gatekeeper. She wants to play the cancer card though she suspects that most people who call the Specialty Pharmacy are in the same boat, that boat being smack in the middle of Shit Creek, the long crab claws reaching in from the water, over the gunwales, even. She hates the quaver in her voice. Knows that she is privileged. Cannot control the quaver in her voice, in spite. It is the 21st century. She is alive in the 21st century. 
She is alive in it. 
She is a slave to her emotions in it. Despite: Buspar (generic), Effexor (generic) and Remeron (generic). She is one of those people who digs deep into her backpack in public. Sometimes she calls it a knapsack, knowing that she is speaking from the wrong place and time. Rucksack. She has rescue medicine for her skin, her lungs, her brain--or wherever the emotions are seated. Some said it was the uterus, of which she is still a proud owner.  
How can she feel so young so alone when she has grown old?
The people who are worse off are already dead.

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