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Tuesday, March 3, 2015

home




I arrived home from Dallas in the wee hours of this morning. I am exhausted but so glad I went. The 9th Annual Conference for Young Women Affected By Breast Cancer exceeded my expectations in every way.

I expect to be writing a lot about this later this week but I am so very tired and have chemo early tomorrow.

Meanwhile, here are some shots of folks gathered around for the group photo. Very many of us were hanging around above taking photos and I think we diminished the numbers a bit. There were 8oo women in attendance. Three hundred of us were on scholarship. It was incredible.

"what's wrong with breast cancer awareness month?"


"October is breast cancer awareness month, which again fills the stores with pink products and pink ribbons. But many people with breast cancer are feeling exploited."

It's only September 30th and I already have pink ribbon fatigue. I ranted about about this in 2006, 2007 and 2008 (there is also a version of this rant in my book, Not Done Yet).

This year, let me point you to an excellent article by Maija Haavisto (and I don't just say this because she quotes me):

Since 1985 October has been celebrated as breast cancer awareness month, often symbolized by pink ribbons and the color pink. It is interesting to note that the awareness month was started by the drug company AstraZeneca (which manufactures several breast cancer drugs) and the pink ribbon originated from cosmetics giant Estée Lauder.

Simply put, I think a lot of breast cancer awareness month is big scam. To quote Maija's article quoting me (is this as po-mo as it gets?):

"I really resent big corporations making a profit - while donating only a tiny percentage to breast cancer research - on some disposable item that has been made under questionable environmental conditions by workers who are paid less than a living wage."

Want to do something to raise breast cancer awareness? Make a donation to an organization doing good work. Advocate for changes in environmental laws. Encourage young people to be aware of changes in their bodies. Do something nice for someone who has been affected by the disease.

And if you are craving a slice of pink cake, washed down with a glass of pink lemonade, by all means, indulge yourself. Just please don't do it in my name.

Monday, March 2, 2015

musings on frivolity

"Sometimes we need to do something not because it’s good for us or because we ought to but because it’s fun. And because it will put a smile on our face and on the faces of people around us."

You can watch a great short video and read the rest of the post over at Frivolity.

quality of life

I just returned from the 10th Annual Conference For Young Women Affected By Breast Cancer in Atlanta.

I am so tired I can barely see straight.

It was a terrific experience and I really learned a lot but I'm feeling too brain dead to share any of the many stories swirling around in my brain.

Instead, I'll share some notes I took from a presentation by Dr. Julia Rowland, director of the National Cancer Institute's Office of Cancer Survivorship, called "Living Fully Is The Best Revenge."

In particular, Dr. Rowland shared with us the "factors associated with quality of life outcomes" - the things that need to happen for those of us who have had cancer to live long and well. My editorial comments are in brackets.

1. Accessing state of the art care (well, yeah).

2. Social support (having it and using it).

3. Finding or having a sense of purpose or meaning in one's life.

4. Learning to express oneself.

I think that these factors apply to quality of life for anyone, not just someone going through cancer treatment.

I'll be back on the other side of chemo.



Sunday, March 1, 2015

Cancer is a drag



We are days away from the PINK OUT and I still don't have a friggin dress, you know I got the shoes though, thanks to an old friend! The dress will be bought tonight, the pinker the better, the more sparkle the better! my hair is already pink:)
Why a drag show? Why not! Since when does fund raising have to be boring? Not when I'm involved. I want it to be a blast so you have no choice but to reach into your pockets and donate. There is no question about it I can throw a party and this will be over the top. I came to my good friend/hairdresser/bar owner Duke with a little idea for this and because he is Duke he brought in amazing talent. These queens are from Ru Paul's Drag Race, this is not some small town drag show this is the drag show. Rain Lounge is a place I have visited a few times, ok so what if they named the pole after me and the staff knows my drink, the place is perfect. It is about accepting people for who they are, no matter their differences. It is about loving someone in-spite of their differences. Doesn't that say enough! I am beyond thrilled to be sponsoring this show with my sweet friend Duke as the host. I just hope all the queens don't mind sharing the stage with a princess!
This event will benefit my new partner (more on that SOON) Cancer Connects. They are a local     organization that helps cancer patients through mentoring, support, and  massage therapy.   http://www.cancerconnects.org/ please check them out. I could not be more happy to be helping my local community.  I know that there will be a cure someday but I do not know if I will ever see that. I want to help my warrior friends NOW, who are battling and need support. Cancer Connects helps your whole being which is vital especially after. The other to benefit from the event is my race team CURE OR BUST. CNY Komen helps our community, free mammos being one of them http://centralnewyork.info-komen.org/site/TR/RacefortheCure/SYR_CentralNewYorkAffiliate?team_id=234025&pg=team&fr_id=2850
Check out the team and while you are, join!

PINK OUT will be an amazing show no doubt. There will be a photo booth, cocktails and friends. The silent auction items are awesome and will raise us a ton of money. The shirts are pink and fabulous and only available at the event. So please come out, no pun intended. Join us as we show that cancer is a drag but we don't have to be a downer about it!


Prophylactic Mastectomy? Study Shows Who Will Benefit


Do you remember your first bra?  I remember wanting one, certainly, then walking up a large wooden staircase with my Mother to the second floor of Herman's department store in Marshalltown, Iowa.  Herman's was on Main Street, naturally, and just a few steps from the courthouse, which stood deep in enormous, sheltering elms that were a hundred something years old at the time.

Once upstairs it was like we were on a stealth mission.  My mother somehow signaled that mysterious Morse code mother speak to the sales clerk, who honest to God, had glasses on a chain and a cardigan sweater. I was to follow her, and she led us  over to counter and removed two "training bras" (wrapped neatly in tissue paper) from a deep drawer packed with all kinds of equally wondrous garments.

Training?  My breasts didn't need training God knows, they needed saving.  Time will tell for sure but I believe that some protection from breast cancer can be put in place long before that first bra (yes, mine had a small pink bow) is worn for the first time.  Exercise, the real old fashioned kind, the kind the guys do, is an essential component, as is a diet leaning far from the meat and potatoes of my Welsh/Irish parents and much closer to the mostly-vegetable-with-meat-once in a while that I enjoy now.  Anything that smacks of hormones is to be avoided at all costs. I'm fairly certain my mother was given DES for miscarriage before I was born, a fairly common practice in the l950's.  The CDC sites a study which points a significantly increased risk (of breast cancer) in DES daughters over age 40, but emphasizes that further research is needed to confirm this link.  It's something I follow.

Between that first bra and l998 when my cancer was diagnosed,  treatment for breast cancer evolved.  Taxol. Tamoxifen.  Taxotere.  Herceptin.  Biophosphonates.  Breast conserving surgery.  In l998 the thought of having both breasts removed to avoid the possibility of another cancer in the unaffected breast seemed unnecessary to me.

This is how I viewed treatment 1) surgery to get rid of the cancer 2) chemo to squash any nasty cells that decided to take up residence in my liver, brain, stomach or spine 3) radiation to prevent recurrence on the affected side and 4) tamoxifen to lower my estrogen level and trick any remaining hormone seeking cancer cells to consider themselves fed.  

My type of breast cancer, an invasive lobular cancer, has a 20% chance of occurring in the other breast.  Had.  The way I looked at it; there was also an 80% chance that it wouldn't, and perhaps, with tamoxifen, even less.  None of the physicians I talked with at the time -- including oncologists and a plastic surgeon, even mentioned a prophylactic mastectomy, yet another woman from my husband's office who was diagnosed within the same month with invasive lobular breast cancer did opt for a double mastectomy.

Between l998 and 2003: there was a 150% increase in CPM (contralateral prophylactic mastectomy) in the U.S., according to oncologist Isabelle Bedrosian, M.D, from The University of Texas M.D. Anderson Cancer Center. Now oncologists will be able to provide women trying to make this difficult decision with results from the first population-based study.

Published in the Journal of the National Cancer Institute last week, researchers used the National Cancer Institute's Surveillance, Epidemiology and End Results (SEER)  registry, which now represents 26 of the U.S. population.  From that group, there were 107, 106 breast cancer patients who underwent mastectomy and 8,902 who of those had the unaffected breast removed as well.

What the researchers found:  "a clear survival benefit" for women under fifty with early stage (Stage I or II) disease that is hormone or ER negative.  

The researchers also found that CPM was not beneficial for women over 60, and that any benefit for younger women with early stage estrogen-receptor positive cancer was still not clear.  This study also excludes the subset of women whose cancer is positive for BRAC mutations.  This is a different subject entirely.

Let's keep working for ways to keep all of us, our sisters, our mothers, our friends, our daughters, free from cancer.  For today, at least, we have another bit of information to keep in our arsenals should this agonizing decision become one we need to consider.

Blessings,
Jody

Please, by all means, read about this study.  Its good to know:
http://www.time.com/time/health/article/0,8599,1968122,00.html

why yes, i have lost my mind

But I think I look very cute in my new pink cowboy hat (I am told that it's the same one that Julia Roberts wore in Runaway Bride - except hers wasn't pink). It's also really, really comfortable and it makes me happy. So there.

Thanks to Debbie from Journey Bags for taking the photo and emailing it to me. She asked me to let you all know that if you use Promotional Code 1208 when ordering from her site, you can get 10% off.

I think my hat is very Texas. And cheaper than new cowboy boots. And since I passed on the opportunity to go to a real cowboy bar and ride the mechanical bull, I thought I should bring home a little bit of the Lonestar State.