Even before I was diagnosed with stupid dumb breast cancer I had such a connection to my Komen Affiliates here in Syracuse. The staff is warm, helpful and always available to answer my forty million questions. Even brave enough to give me their cell number. When I found my lump ironically it was open registration for Race for the Cure so I spent the day with Kate and Deb and Kelly and her sweet mom registering people. Kate and Deb were sitting in the chairs when I walked in and almost started to cry right there. I think my first words were "Hey girls, are we ready? I found a lump". They wanted me to go home and chill but I needed to stay. A survivor walked in and I was a little freaked but in some crazy way it reassured me "Shit people survivor this". When MC got there we went into the bathroom so she could feel the lump (we are talking breast cancer here so chill men). What a perfect place to do a breast exam!! When I left both Kate and Deb told me it was going to be ok and to call them Monday ASAP, both have been very respectful but supportive at the same time. Once the news spread to others at Komen the support was incredible. I do not want to hear any bullshit about Komen because for me they were/are amazing. No one is perfect and mistakes were corrected. I will focus on the positive and the fact that 75% of the money raised stays in CNY, directly affecting women with stupid dumb breast cancer, shit that's me!! I kept forgetting that. Anyway, here is their "Pink in Print" where I am featured in the survivor corner (wow I'm really dealing with breast cancer, it is still wigs me out). Livvy did a bang up job of not censoring this loud foul mouth survivor! What a a great opportunity to remind you to join the Cure or Bust team as we take CNY Race for the Cure by friggin storm this year!! If you are not at the race on this team May 18th you are missing out, trust that.
http://centralnewyork.info-komen.org/site/DocServer/fall-winter_newsletter_2012corrected.pdf?docID=4384&AddInterest=4441
Friday, October 9, 2015
Thursday, October 8, 2015
"body, mind, spirit" a national conference for younger women affected by breast cancer
From the Canadian Breast Cancer Network:
Please circulate this to your network members, friends and family, we would love to see them there!
OTTAWA, Oct 1 /CNW/ - Today, October 1, is the start of Breast Cancer Awareness Month and the Canadian Breast Cancer Network and co-presenter Canadian Breast Cancer Foundation will recognize the month with a unique networking event for 400 young women with breast cancer.
The National Conference, called "Body, Mind, Spirit", will offer young women with breast cancer the opportunity to network with others who understand their situation, find out about the latest research directly from some of Canada's bright young researchers, and follow theme sessions on issues everyone with breast cancer is confronted with.
Young women will have the chance to be supported in all aspects of their cancer journey. Theme sessions for the body include healthy living and prevention; for the mind, sessions on chemo brain, self-advocacy, medical research and the latest about breast cancer; for the spirit will touch on everything from Yoga sessions to a chance for a guided walk in a specially constructed Labyrinth for spiritual centering.
Participants can look forward to frank discussion and to be able to question experts about babies after breast cancer, breast reconstruction, what to tell your children about breast cancer and when, and intimacy and sexuality after breast cancer.
A writing workshop and a creative art session will aid self-expression, and book signings and a breast-cancer related art show will give participants a chance to create art, meet authors and to view theme art by people from all over Canada affected by breast cancer. Poster presentations will cover all that is new from breast cancer resources to community support groups. Author and breast cancer husband Mark Silver will interest many with his experiences and encouragement. .
The conference will feature two gala evenings; a "Dinner and a Movie" night presented by Rethink Breast Cancer, a special glimpse of their upcoming BreastFest with Jonna's Body, Please Hold and an appearance by filmmaker and comedian, Jonna who will present her Girl Manifesto - an uproarious look at our kooky notions of body image, defying the Image Police and freeing your inner renegade. Movie night food at a picnic in the park will feature everyone's favorite treats.
The second Gala will feature an Arabian Night with belly dancing, hand kohl painting, a blaze of color, special décor and treats for everyone present, a banquet as only the Hilton Hotel can produce, and special guest Rock Star Bif Naked who will share her breast cancer journey with her story "Rock Your Cancer".
Canada's own beacon of hope Carole Ann Cole, originator of the Comfort Heart symbol worn by hundreds of thousands, will be one of the speakers at an upbeat closing ceremony.
"Body, Mind, Spirit" takes place in Toronto, October 29-31. No registrations will be available on site for this conference, which is expected to sell out to 400 participants. A special hotel conference rate of $129 per night at the downtown Toronto Hilton will only apply to a block of rooms being held until October 8.
Registration is now open through www.cbcn.ca
I attended the first conference organized by the CBCN in 2007. It was an amazing experience. I'll be attending again this November (I am the fortunate recipient of a scholarship). Will you join me?
Right to choose
Would you move to Oregon if necessary? I would.
I hope that you do not disagree with this woman's choices but I completely support her. She has a very unfortunate medical diagnosis at age 29 and has taken steps to live her life as best she can. She has gotten the medication she needs to die with dignity as she wants. She isn't rushing to use it but is much more relaxed knowing that when the time comes, she will be able to choose.
I am a firm believer in DNR's and palliative care. But sometimes I think it doesn't go far enough. First of all with a DNR, someone else is making the decision on your body that it is time to stop treating you. Second of all, what if the DNR happened after months of agony? Instead of at the beginning of all the agony. Palliative care is wonderful but it can only do so much. What if your body develops a resistance to all the pain medications? Where would that leave you?
I would move to Oregon in a heartbeat if necessary.
nothing ventured...
I have decided that I won't be doing NaBloPoMo this year.
My heart just isn't in it. This is in part because two of my NaBlo compadres have died. It just won't be the same without Sara and Emily. I miss their voices so much and I just don't feel like blogging every day without them at my virtual side.
But November can be a hard month for me and I still need something to distract and consume me.
I also need motivation to return to the scary (for me) world of fiction writing. I got so much done during my online writing course last year but have done nothing since submitting my outline for a novel, as my final assignment on December 31.
A few weeks ago Rachael suggested to Zoom that she try NaNoWriMo. And that got me thinking. If structure is what I need and my inner critic is my worst enemy then what better solution than to crank out 50,000 words in 30 days?
They don't even have to be good words (what matters with Nano is quantity over quality).
And before I know it, November will be over and I will have a whole bunch of words on paper.
Sounds like fun, right? Right?
S. is joining me, as part of the NaNo Young Writers' Program. I'm very pleased.
Redefining Pink
haze verb (used with object), hazed, haz·ing.
October has started to feel like a new form of hazing. Since the end of September everything you see -- from buses to billboards to Monday Night football to the grocery store -- shimmers in pink. You can "support breast cancer research" (so it is said) by purchasing everything imaginable and then a multitude of unimaginable things as well. Every year it gets worse.
Just Google Breast Cancer 'Awareness Products. You could spend the rest of your life reading the lisings, about 37,000,000 results to be exact.
The year I was diagnosed I spent the first day of October beginning my second course of chemotherapy. I was celebrating. Why? Because Taxotere was so much easier than FAC. Instead of a three-day infusion on a pump it was only an hour-long drip. That felt like vacation. I was celebrating because after six months I was half way through chemo, celebrating because after four surgeries and a life-threatening infection, I finally had enough energy to drive myself to MD Anderson. I no longer looked like a walking skeleton. I was celebrating because my hair had grown out and it looked cool, even though it was about to fall out again.
My celebration was not about pink. My celebration was about getting through cancer treatment one day at a time. I was celebrating because that's the way I roll.
But that does not mean I am dishonest about cancer in general and breast cancer in particular. That doesn't mean I'm not deeply critical of consumerism masquerading as research, of flawed studies, of misinformation about breast cancer when and where and I find it.
Plus as a patient among many the pink hoopla was embarrassing. There were thousands with cancer at MD Anderson who were NOT having parades in their honor. Those with blood and lymph cancers, colon, ovarian, uterine or lung carcinomas. Myelomas, sarcomas, glioblastomas. Women with those cancers had treatments as grueling and some with significantly more mortality. But they did not have a pink machine.
We need to ditch the machine, redefine and be realistic about pink. A few thoughts:
1.
to subject (freshmen, newcomers, etc.) to abusive or humiliating tricks and ridicule.
October has started to feel like a new form of hazing. Since the end of September everything you see -- from buses to billboards to Monday Night football to the grocery store -- shimmers in pink. You can "support breast cancer research" (so it is said) by purchasing everything imaginable and then a multitude of unimaginable things as well. Every year it gets worse.
 |
There are 37,000,000 listings for breast cancer awareness products. Don't buy it. |
Just Google Breast Cancer 'Awareness Products. You could spend the rest of your life reading the lisings, about 37,000,000 results to be exact.
The year I was diagnosed I spent the first day of October beginning my second course of chemotherapy. I was celebrating. Why? Because Taxotere was so much easier than FAC. Instead of a three-day infusion on a pump it was only an hour-long drip. That felt like vacation. I was celebrating because after six months I was half way through chemo, celebrating because after four surgeries and a life-threatening infection, I finally had enough energy to drive myself to MD Anderson. I no longer looked like a walking skeleton. I was celebrating because my hair had grown out and it looked cool, even though it was about to fall out again.
 |
| Aunt Jody and Tyler McCready, who turned 18 October 5. |
But that does not mean I am dishonest about cancer in general and breast cancer in particular. That doesn't mean I'm not deeply critical of consumerism masquerading as research, of flawed studies, of misinformation about breast cancer when and where and I find it.
Plus as a patient among many the pink hoopla was embarrassing. There were thousands with cancer at MD Anderson who were NOT having parades in their honor. Those with blood and lymph cancers, colon, ovarian, uterine or lung carcinomas. Myelomas, sarcomas, glioblastomas. Women with those cancers had treatments as grueling and some with significantly more mortality. But they did not have a pink machine.
 |
| Are you buying something you don't need? |
- Relating to the Ribbon. Each woman's perception of the pink ribbon is part of her story. There are 2.3 million breast cancer survivors and 2.3 million stories. Listen to them.
- Awareness vs. Education: Have you been living in a yurt? People are aware of and affected by breast cancer, from cab drivers to elementary school children. What they understand about the disease itself may be something else entirely. That's our job as breast cancer advocates, to know the facts and pass them on. In the week following my diagnosis I thought I was getting a handle on what I needed to do and why. Then my oncologist presented a full-page treatment outline that ended with "five years of tamoxifen." Oh. For the archives the National Breast Cancer Coalition has an excellent series on the fact and myths of breast cancer.
- It's not just about white, educated professional women. Sistas, both African American and Hispanic women get everything you do, plus. Both are characterized by late diagnosis. African Americana women often have more aggressive disease and cancer itself has now overtaken heart disease as the leading cause of death in the Hispanic population. If you do anything this month find out what is happening in underserved communities where basic outreach still is essential. This point is missing in pink discussions. There are cases where lives actually DO depend on getting women in for mammograms. That doesn't mean we stop working for better detection. Breast cancer advocacy must move forward in a coordinated way: targeted outreach, targeted research, targeted education built on a foundation of mutual support and respect.
- Early detection isn't everything. Biology is. Some 30 percent of all breast cancer cases will metastasize. Initial staging is one factor of many impacting breast cancer survivorship. Genomic science must continue to burrow into cancer biology -- triple negative and inflammatory breast cancer, reasons why some cancers are aggressive and others aren't. As a survivor this means I have a plan that I review yearly in MD Anderson's Survivorship Clinic and with my internist. My health and life depend on this. Intellectually I grasp that cancer can outwit our best efforts and adherence to recommended guidelienes. Instead of living like there's no tomorrow I live as if today is the best thing that's ever happened. Because it is.
- Stop racing for a cure. Let's start thinking about them, instead. There isn't a cure. Eventually there will be genomic analysis of your particular tumor and an individualized plan developed to eradicate it. While the oncologist's toolkit is expanding today's kit will look rudimentary within another generation. The biology of breast cancer, and the mutations giving rise to cancer, is in some ways in its infancy. Every layer of science explained reveals yet another layer of complexity underneath. So we can not, must not, fritter away research dollars. Make your voice heard in your congressional representative's office and make it known repeatedly that you support the current level of funding at the National Cancer Institute. Keep in mind that one in two men, and one in three women will be diagnosed with cancer over the course of their lifetime.
- The power of mutual respect. My cup of tea might be your cup of coffee. You might support an organization I do not, but that doesn't mean we don't share a mutual goal and support each other's experience. Because I am with you on your journey, in supporting your hopes and understanding your fears. My feelings about pink are just that: feelings. Opinions. Many writers take on pink - look at the writers of the Breast Cancer Consortium and the work of my #BCSM co-moderator Alicia Staley. Join us on one of our Monday chats for the input of Deanna J. Attai, MD, FACS and the other medical oncologists, radiologiss and surgeons who routinely join our chat.
- Pretty in Pink? Not always. Some 30 percent of all breast cancers will metastasize. On October 13, Metastatic Awareness Day, we will recognize women affected with Stage IV cancer. This is where attention is needed. If you haven't, check out these organizations: Metavivor, Metastatic Breast Cancer Network, Triple Negative Breast Cancer Foundation and the Inflammatory Breast Cancer Foundation. Take a look at how these groups are approaching metastatic disease. The days that these women feel isolated and cut off from the mainstream breast cancer culture - are over. We all know too many women with disease recurrence. We are not leaving them behind.
- Global Awareness. We need to expand our global breast cancer conversation. In 2010 more than 50% of the world's deaths from breast cancer occurred in developing, not high-income nations, according to Benjamin O. Anderson, MD, discussing The World Health Organization's Initiative for Noncommunicable Diseases last month at ASCO Breast in San Francisco. For many countries pink isn't about mammography, which may not be practical, but what kind of intervention will make the greatest impact in decreasing mortality immediately.
The first week of Breast Cancer Awareness has ended. Sometimes it reminds me of how Christmas has been commercialized - it starts early, is in your face, and makes myth of the experience itself. It can trivialize a serious disease, divert discussion and dollars. I happen to think if we continue to act fearlessly - as friends, as survivors, advocates and activists - in bringing our intellectural collective to bear on the issue we can change the landscape for your daughters. Last week I was stunned to hear someone on our weekly #BCSM chat express the thought that we - co moderators Alicia Staley and Deanna Attai, MD and I -- had a political agenda. If having an anti-cancer, evidence-based, pro-survivorship, community-based agenda is political then yes, I'll be the first to print campaign buttons and banners. On my dollar. Not from pimping cancer.
Here's looking at you, kids.
Here's looking at you, kids.
# # #
This past week we were shocked and saddened to hear of the recurrence of Lisa Adam's cancer. If you are not familiar with her or her story please read: "What to Do When You Are Diagnosed with Stage IV Cancer." Lisa, her husband Clark, their children and friends are in my thoughts and prayers.
Wednesday, October 7, 2015
letter of the day
Yesterday, CBC Radio's Q featured an interview with Samantha King, author of Pink Ribbons Inc.
At the end of the interview, listeners asked the following questions (they were also posted to the Q blog): What are your impressions of cancer fundraising and awareness efforts? Are they working? Do you find any aspect of them troubling?
My sister-in-law, B. alerted me to the interview (she listens on the east coast schedule) and encouraged me to write a letter in response. This morning, a slightly edited version of this letter was read on the air (I was the "Letter of the Day"):
At the end of the interview, listeners asked the following questions (they were also posted to the Q blog): What are your impressions of cancer fundraising and awareness efforts? Are they working? Do you find any aspect of them troubling?
My sister-in-law, B. alerted me to the interview (she listens on the east coast schedule) and encouraged me to write a letter in response. This morning, a slightly edited version of this letter was read on the air (I was the "Letter of the Day"):
In January 2006, when I was 38 years old an the mother of two young children, I was diagnosed with very aggressive breast cancer. I underwent a brutal treatment regimen only to learn in November of that same year that the cancer had spread to my liver. I was told that I had “years, not decades” to live.
I resumed treatment and, this time, my response was immediate and dramatic – by June 2007, there was no longer any sign of cancer in my body. As I write this, I am still in remission. I'm also still in treatment, as we don't know enough about what happens when metastatic breast cancer disappears to make an informed decision about stopping.I know without a doubt that I am alive today because of the kind of cutting edge research funded by breast cancer organizations. I also know that thousands of women who've been through breast cancer live better lives because of the kind of advocacy and outreach work that is undertaken by non-profit organizations.All the letters that the host, Jian Ghomeshi, read were on this subject and all of them opposed pinkwashing. Perhaps tomorrow will bring a deluge of letters taking an opposing opinion but it's good to see that more of us are speaking out on this issue that has driven me wild since my own diagnosis of breast cancer.But I do cringe, seethe and yes, even rant every time October comes around and we are deluged with pink products from fried chicken to face cream to key chains.In theory, I'm not opposed to corporate sponsorship. But in the same way that I think cigarette companies should not be permitted to sponsor children's festivals, I'm offended when companies that sell products that are unhealthy, bad for the environment and laden with carcinogens jump on the “pinxploitation” bandwagon. At best, these campaigns do little to eradicate breast cancer and worst, they are a cynical attempt to grab some good PR and increase profit margins at the expense of anyone who's life has been affected by cancer.
Don't get me wrong. I don't judge anyone who's drawn to all the pink stuff. I own a lovely pink cowboy hat. I would just ask folks to think before they get swept up in the “Pinktober” frenzy. Put that pink soup back on the shelf. Step away from the pink sweater with the pink ribbon buttons (for so many reasons). Unless you really want the pink sunglasses, save your money. Most companies only give a tiny percentage of sales to breast cancer research. Why not make a donation instead to an organization that is demonstrably contributing to research, advocacy and especially prevention of all cancers? Then you'll know that you really are making a difference.
Cross-posted to Mothers With Cancer.
Avoiding pinkness
It worked in the sense that we were off line and avoiding pink. But it was not without its ups and downs.
First I was very efficient and packed two empty reusable water bottles. And I left the better one one the plane. Second, I left the one of a kind charger for my tablet in the hotel in Portland where we were spending the first and last nights. By the end of our second day, my feet were hurting from RA so much I had to stay off them more for the rest of the trip. And our spare water bottle appeared to have sprung a leak.
It was a great time catching up with relatives and enjoying the Oregon coast. We even saw seals, sea lions, and whales. We did not see many signs of pink. To be fair we were in a small town and avoided the areas with chain stores. It was only when we ventured near them, were we assaulted by pink. Then on our last night, Sunday, we watched the Patriots destroy the Chiefs while wearing pink gloves, pink shoes, pink socks, pink towels, pink ribbons on their helmets, etc. I am not sure if the pink weakened the Chiefs but we were happy to see the Patriots win.
While watching the game, my husband suggested that instead of manufacturing all that pink crap (particularly if in some factory overseas), that all NFL players should donate 1 day's pay to breast cancer research instead. 32 teams times 53 players = 1696. Average salary is $1.9 million or a total of $3,222,400,000. So one hour's salary would be $368,864 or a day's salary would be $8,852,747. A tidy sum indeed. Why don't they just donate that directly and we can skip all that pink?
But I digress. We did successfully avoid pink by avoiding chain stores and chain restaurants. We also didn't watch a lot of television.
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