Care page, HAWMC day 4

Posted: April 4, 2013 | Author: | Filed under: breast cancer | Tags: , , , , , , , | 7 Comments

Today’s mission in the Health Activist Writer’s Month Challenge: Create a “care page” – a list of your best resources that someone who is newly diagnosed could go to when starting to advocate for themselves or a loved one.

Consult the mainstays such as Breast Cancer Action, and Think Before You Pink, and Dr Susan Love Research Foundation, and breastcancer.org, and The Rose. Consulting “Dr Google” once a diagnosis has sunk in is something most people do.

Follow a blog that appeals to you. Whatever flavor you prefer — spiritual, snarky, research-oriented, or off-the-cuff like this little blog — there’s a blog out there to meet your needs. Among these blogs, you’ll find posts such as this and posts such as this with practical advice from those who’ve been there. Much of this information is rather like on-the-job training; you don’t know what you need to know until you need to know it. Take the hard-won wisdom from those who have walked this walk before you.

My best piece of advice, in a sea of good advice, though is this: Do what you believe in your heart of hearts is best for you. Whether a prophylactic bilateral mastectomy instead of a lumpectomy, whether undergoing reconstruction or flaunting the flat & fabulous look, or whether pursuing a second or a third or a fourth opinion. Follow your instincts and listen to your gut.tumblr_mefqlvRiq41qlp3rfo1_1280

 

 

 

 

If not Komen, then who?

Posted: October 12, 2012 | Author: | Filed under: breast cancer, cancer fatigue | Tags: , , , , , , , , | 15 Comments

Because it’s Pinktober, the month for breast cancer “awareness,” you can’t swing a cat without hitting some form of pink merchandise allegedly deemed charitable and “for the cure.” Now, before all you cat lovers get up in arms, I wouldn’t really swing a cat, it’s just an expression from my neck of the woods. I’m not a cat person and have never had one as a pet, but I believe in animal rights for all critters, including cats.

Before I was diagnosed with the dreaded disease and in the early days of my cancer “journey,” when I thought of BC charities, I thought of Susan G Komen for the Cure. It wasn’t until I became better educated, as a member of club to which I did not want to belong, that I learned  how shockingly little of Komen’s resources actually go toward “the cure.” The much-beloved blogger Rachel Moro of The Cancer Culture Chronicles deserves the credit for my education; to see how beloved she was, click here. Sadly, Rachel died from metastatic breast cancer in February at age 42. Words fail me when I try to explain how instrumental and important Rachel is (present tense very much intended) in the ongoing march toward transparency in BC charities and in dethroning Komen as the go-to breast cancer charity.

Rachel was tireless in her efforts to remove the emphasis from awareness and place it where it belongs: on research. She wrote so eloquently and so passionately:

Education, screening and treatment won’t “cure” my cancer.  Sure, by being “educated” I might be able to find out more about my particular type of breast cancer. By being “screened” I might be able to see if my cancer has spread.  By being “treated” I might be able to keep the cancer I already have under control.  But will any of these activities result in me being cured? No. The only hope that my cancer will be cured, is by research and research alone. The only way that breast cancer will be prevented, given that many of those diagnosed have none of the known risk factors, is through research.  Indeed, the only way we can “end breast cancer forever” is with research.  Education, screening and treatment activities deal with finding and treating cancers we already have, not curing them and not ending breast cancer now or forever.  Period. Spending anything less than the bulk of its resources on research, clearly does not support Komen’s mission of ending breast cancer forever.

I’ve said before that while Komen has done much to eliminate the shame and scandal that once was associated with breast cancer, in the 30 years that the organization has been working “for the cure,” not much has changed. 30 years. No cure. Nothing even close to a cure.

The statistics are alarming. Being diagnosed with cancer is scary enough, but to also learn that advancements toward a cure are nonexistent is terrifying. The American Cancer Society estimates for 2011 predicted that some 230,480 women would be diagnosed with an invasive breast cancer, and an additional 57,650 women would be diagnosed with an in situ breast cancer. For the uninitiated, in situ breast cancers are located within the milk ducts (ductal carcinoma in situ, or DCIS) or breast lobules (lobular carcinoma in situ or LCIS), in the same spot the cancers began. Invasive breast cancers are those that originate in the ducts or lobules but have broken through to invade surrounding breast tissue. The majority of breast cancers are invasive, and many women, including yours truly, find themselves with both in situ and invasive cancers, both at the same time; sometimes in the same breast, even.

The ACS reports that since 2002, breast cancer incidences rates have remained relatively stable. So in the 30 years that Komen has been promoting its pursuit “for the Cure” and in the last decade of ACS records, not much has changed. What needs to change is the shift from “awareness” to research. As Rachel so astutely pointed out, the best path “for the cure” is through research. What causes breast cancer? What makes it recur? How can it be prevented?

Now that we know that Komen hasn’t really done all that much toward finding a cure for breast cancer, the question becomes, if not Komen, then who? My blog friend at I’ll Drink to That raised an important question in a comment to this blog post when she asked, “Who should my money go to? I don’t want it to go to pink socks for football players, or stupid tshirts or pink nail polish – I want it to make a difference.”

Who should my money go to? Excellent question. The short answer, IMHO, is anyone but Komen.

And here, ladies and gentlemen, are some ideas.

Research-based charities: You’ve got the heavy-hitters, like  MD Anderson, right here in my fair city. There’s also The Dana Farber Cancer Institute in Boston, and Memorial Sloan-Kettering Cancer Center in New York City. Those 3 links take you to each org’s donations page.

Beyond the hospitals, there’s the Dr Susan Love Research Foundation. This is one of my faves, and I’ve blogged about it here and again here, because the focus is on the research that will stop breast cancer before it starts. What a dream come true! Breast Cancer Action is a fantastic organization founded by BC survivors whose goal is to “inspire and compel the changes necessary to end the breast cancer epidemic.” The Breast Cancer Research Foundation was founded by an executive from the Estee Lauder company, and the foundation funds nearly 200 scientists working on the breast cancer puzzle. The National Breast Cancer Coalition has declared January 1, 2020 as its deadline for ending breast cancer forever. I’d like to see that goal realized.

Local breast cancer charities: Google “breast cancer charity” and your city. You should get several hits that aren’t Komen-related. My favorite in my city is The Rose. Here, insured women and women who can pay for services help offset the costs for women who are uninsured or who cannot pay. It’s been estimated that women with insurance have breast tumors diagnosed when the tumors are about the size of a raspberry. Women without insurance are diagnosed with tumors the size of a tangerine.

Site-specific breast cancer charities: One of the most intriguing is My Hope Chest, which offers financial assistance to women for reconstruction-related expenses. Even with insurance, reconstruction is expensive. Metavivor focuses on research for metastatic breast cancer, or BC that has spread. Look Good Feel Better uses the idea that if cancer patients look more like themselves–and less like cancer patients–during treatment, their self-esteem will increase ans so will their ability to cope.

There are ways to help beyond spending money, too. If you are considering buying a pinked-out product that claims to help fight breast cancer, read the fine print to see which charity is receiving proceeds. If it’s a charity that isn’t actively working toward research, perhaps you can select another product or skip it altogether. Volunteer at your local hospital or breast screening center. Speak up: if the preponderance of pinked-out product placement bugs you, say so. Tell your grocery store manager that you don’t like it. If you come across campaigns that seem more about the boobs than about the disease, contact the purveyor and say so. Spread some cheer to someone on the cancer “journey” by reaching out to them, regardless of how well you know them. A text, email, or greeting card saying “I’m thinking about you and I support you” is a small effort with big impact. Join Dr Susan Love’s Army of Women in which women–with and without breast cancer–of all ages and ethnicities can participate in a variety of studies & surveys.

And this concludes our lesson on if not Komen, then who? Class dismissed.

Blog with love

Posted: October 1, 2012 | Author: | Filed under: breast cancer, cancer fatigue | Tags: , , , , , , , | 16 Comments

I woke up in a snit this morning. I have been dreading this day for a couple of weeks, from the first glimpse of the ubiquitous pinkwashing that occurs every October. It’s the official start of “Breast Cancer Awareness” Month — quotation marks mine, because I really can’t in all seriousness say that phrase without denoting how absurd the “awareness” idea is. I have a lot of ire toward Pinktober and the pinkwashing of everything from toilet paper to yogurt. As someone who went toe-to-toe with the dreaded disease, I find it offensive that corporations can still hock their wares under the guise of awareness. Is there really anyone on this planet not aware that breast cancer exists? Come on. Enough with the awareness. Try doing something really meaningful, like slashing the pinkwashing advertising budget and cut a check directly to a do-good organization.

I noticed the Pinktober creep starting a couple of weeks ago. As I pushed my grocery cart through the store, filling it with the provisions that keep my family up and running, I saw something awful out of the corner of my eye.

Pink-ribbon saucepans, and water bottles, and plastic containers. Oh great, here we go again. I wonder if any of that wall of pink plastic is BPA free? The studies that link BPA, a common chemical in rigid plastic, to breast cancer, are piling up at an alarming rate.

It gets worse — pink-ribbon hair brushes, so you can brush for the cure. Unless of course you’re undergoing chemo and have no hair. I’m sure the bald BC patients shopping for groceries appreciate the reminder that wait — not only do you have a scary-ass disease, you’re also bald and vulnerable and grappling with negative body image. Thanks, Revlon. This pinkwashed product seems particularly crappy. 

What about a pair of pink-ribbon socks? From the grocery store. Yeah, I bet those are soft and cozy. And how much of the $1 price tag is going toward any kind of change on the BC front?

I’m lucky I didn’t throw up in my mouth at the first of this year’s crop of pinked-up junk masquerading as charitable fundraising products. I guess the junk is designed to give shoppers a warm-fuzzy feeling about doing something important for the disease that descends upon one in eight women in the U.S. every year. The products themselves make me sick, but the fact that the pinkwashing starts earlier and earlier is really disgusting. As if the Christmas Creep isn’t bad enough, we now must endure the Pinktober Creep as well. Son of a nutcracker.

If buying pinked-up products could cure breast cancer, dontcha think it would’ve by now? Why not cut out the middle-man and send your hard-earned and well-meaning money straight to an organization that can actually do something useful?

Like my friend Jen at ihavebreastcancerblog, who is also blogging about Pinktober, I wore a pink shirt today. Not because I want to commemorate “Breast Cancer Awareness Month,” but because it matched my bright blue Nike shorts with the pink & white stripes, and as I headed to the gym for another grueling post-knee-surgery PT session, I needed the lift that a well-put-together outfit can provide. The pink shirt in question happens to be my survivor shirt from last year’s Race for the Cure. My first — and only — Race for the Cure. 

After the gym, I was in the drive-through lane at the bank, and the bank teller was super chatty. I’m all for some friendly chit-chat from a service provider, as long as they can multitask. If they can talk and conduct business, fine with me, chat away. But if they have to stop to chat, uh-uh. Nope. Zip it and get your work done. I don’t want to take time to listen to idle chatter from someone with whom I’m not likely to form a relationship. Does that make me cranky? crotchety? unfriendly? mean? Maybe. But I’m honest. The last thing I want to do is listen to someone blather on while I wait for them to do the job they’re supposed to do. So when the bank teller started chirping about how it’s the perfect day for a convertible, and asking me if I’m working today or just out enjoying the day, I could feel myself getting snippy and impatient. When she asked if I had a good weekend, I was about to turn off the smile and figure out a nice way to say, “Hurry the hell up, lady. Less talking, more working.” Deep breaths, deep breaths.

She noticed my Race for the Cure t-shirt and commented on it. I haven’t worn this shirt since I learned the ugly truth about the Susan G Komen organization and how precious little SGK has done to actually look for, much less find, a cure. Once the SGK-Planned Parenthood debacle occurred, I decided that SGK would not get one dime from me, ever again. I did the Race for the Cure exactly once, to see what it was all about. It was a nice experience, but I’d rather send my $40 registration fee someplace in which it has a shot at making some real progress instead of lining SGK founder Nancy Brinker’s pockets and/or perpetuating the farce that SGK is committed to ending this wretched disease.

The chatty teller asked me if I was going to do the Race for the Cure again, and I said no. Sometimes I wonder why I’m compelled to answer so honestly rather than just tow the party line and say what people want to hear. Then I realize that wondering something like that is akin to wondering why the sky is blue instead of green, and that it’s utterly pointless to expect things like that to be different. Anyhoo, I told the teller that no, I will not be doing the Race for the Cure again, and of course I proceeded to tell her why.

She may be somewhat sorry she chose to be chatty with me today.

She got a bit of an earful. A well-reasoned and calm earful, but an earful none the less. I explained that before being inducted into the Pink Ribbon Club, I knew Susan G Komen for the Cure was the leading breast cancer organization, and that it wasn’t until I acquainted myself with more than just the superficiality of SGK and its pink-ribbon-bedecked world that I realized that the group wasn’t exactly working hard to find a cure. Silly me, I thought that if “for the Cure” was part of the group’s official name, so much so that it would sue others for harmlessly using it for their own fundraising, that the group might actually be focused on finding a cure for this disease that had so rudely interrupted my life. Not so with SGK. Instead of funneling the majority of its funds toward finding a cure, it instead chooses to focus the majority of its resources on education and “awareness.” As someone who has walked more than a mile in pink shoes, I can’t abide SGK’s priorities. As stated on its website: “In 1982, that promise [between Susan G Komen and her sister Nancy Brinker] became Susan G. Komen for the Cure® and launched the global breast cancer movement. Today, Susan G. Komen is the boldest community fueling the best science and making the biggest impact in the fight against breast cancer. Thanks to events like the Komen Race for the Cure, we have invested almost $2 billion to fulfill our promise, working to end breast cancer in the U.S. and throughout the world.”

Sounds good, right? But think about it — if  SGK is the best of the boldest and has been working toward a cure since 1982, wouldn’t you expect to see more progress? Thirty years. And very little change.

In fact, The American Cancer Society says this about the incidence rate of BC:

•  Between 1975 and 1980, incidence was essentially
constant.
•  Between 1980 and 1987, incidence increased by 4.0%
per year.
•  Between 1987 and 1994, incidence was essentially
constant.
•  Between 1994 and 1999, incidence rates increased by
1.6% per year.
•  Between 1999 and 2006, incidence rates decreased by
2.0% per year.

It wasn’t until 1999 that BC rates decreased — 20 years after SGK came on the scene — and even then, by 2 percent a year. Does that sound like progress?  Does that sound like “for the Cure?” Not so much. I did not whip out the above statistics for the chatty bank teller (I do have some standards, after all, even when I’m ranting to a total stranger through a plexiglass window), but I did tell her that this is why I won’t do another Race for the Cure or support the Susan G Komen for the Cure. She did ask, after all.

She said she had no idea. She thought that SGK did all kinds of good things for breast cancer, and that they raised a lot of money to find a cure. I said she’s right about part of that: Komen does raise a lot of money, but precious little of it goes toward the research needed to find the cure. She asked me how much of Komen’s money goes toward research, and when I said the best estimates are no more than 19 percent, she was stunned. Perhaps I should have felt a bit badly for bursting her bubble, but instead I felt triumphant when she asked, if not Komen, then who?

Cue the choir and release the confetti bombs!

I told her that personally, I like The Rose right here in Houston, and applaud the efforts to make a real difference in the lives of women with breast cancer, especially those who are traditionally underserved by screening, prevention, and treatment. I also like Dr Susan Love’s group, the Dr Susan Love Research Foundation. The DSLRF is determined to find the cause of breast cancer, not just tie a pink ribbon around the idea of it. Dr Love has been oft quoted as saying, “The key to ending breast cancer is to learn how to stop it before it starts.”  She also says:

“I have spent my whole life working in the field of breast cancer. At this point I am frustrated that we are still doing the same treatments with about the same results as when I started thirty years ago. Now that we can get to where breast cancer starts we have the opportunity to eradicate it. I am excited and impatient. The road is clear. We can go slowly or quickly, but everyday that we delay another 592 women will be diagnosed and 110 will die. The cost is too high to hesitate. This is our job not our daughters’, granddaughters’, nieces’ or nephews’. We can do it and we have to do it!”

Thanks to The DSLRF’s focus on research, we’ve moved from throwing around “for the Cure” to actually working to figure out and eliminate the disease. I like Dr Love’s idea of eradication much better than Komen’s “idea” for the cure.

Now is a great time to mention Dr Love’s latest initiative: The HOW Study. To get the word out about The HOW Study, Dr Love is encouraging us to Blog with Love. Today’s the day for the third-annual blogger initiative, and I’m all in! The HOW Study, along with The Army of Women, is in my opinion much more viable and holds much potential to enact real change. I’ve participated in several Army of Women studies and will continue to do so every chance I get. I encourage everyone reading this to check out The Army of Women and see if there’s a study that applies to you.

The HOW Study is a ground-breaking study for women (and men) who have no history of breast cancer. See, the majority of women diagnosed with BC don’t have a family history of or clinical risk factors for the disease. Dr Love wants to figure out what causes the disease so we can figure out how to stop the disease. Dr Love’s website says that 280,000 women were diagnosed with BC last year. Of those, 40,000 women will die from the disease this year. You can help turn those numbers around by joining The HOW Study.

I’ve just decided I’m ditching my Race for the Cure shirt and am going to get this shirt instead:

zazzle.com

Susan, science, and stagnation

Posted: June 14, 2012 | Author: | Filed under: breast cancer | Tags: , , , , , , , , , | 27 Comments

I’m not sure “stagnation” is an actual word, but I like the alliteration so it stays. It’s my blog, after all, and I can make up words if I want to (but I’m still not comfortable ending a sentence with a preposition, hence the parenthetical aside).

Ok, with that out of the way…on to the news.

Susan Love announced that she’s been diagnosed with leukemia.

My immediate response to this news: Dammit.

Dr Susan Love is someone I respect and admire, and she’s done more for the breast cancer cause than a room full of Komens, IMHO. Her book, Dr Susan Love’s Breast Book, is considered the bible for those with breast cancer. Her focus is on research, not ribbons. The mission statement for her organization is this: “The Dr. Susan Love Research Foundation works to eradicate breast cancer and improve the quality of women’s health through innovative research, education, and advocacy.” She mobilized the Army of Women to get women of all ages, races, and stages involved in research. I’ve participated in several AOW studies, from simple online surveys to blood tests, and believe wholeheartedly in what she’s doing. Love says, “The key to ending breast cancer is to learn how to stop it before it starts.” YES! She also says,

“I have spent my whole life working in the field of breast cancer. At this point I am frustrated that we are still doing the same treatments with about the same results as when I started thirty years ago. Now that we can get to where breast cancer starts we have the opportunity to eradicate it. I am excited and impatient. The road is clear. We can go slowly or quickly, but everyday that we delay another 592 women will be diagnosed and 110 will die. The cost is too high to hesitate. This is our job not our daughters’, granddaughters’, nieces’ or nephews’. We can do it and we have to do it!”

When Love announced her diagnosis yesterday, she was resolute in facing the bad news, saying “As many of you know, I have never shrunk from a challenge.  I plan to bring my indomitable drive and energy to overcoming this and will be back to work as soon as possible.”  Go get ’em, Susan!

Next, the science news. A 45-year-old Bay Area man has been cured of HIV and the cause of his cure is a bone marrow stem cell transplant. My friend Katie at Uneasy Pink sums up the science of this breakthrough much better than I; check it out. Long story short is that the guy, who tested positive for HIV in 1995, also battled leukemia and underwent a bone marrow stem cell transplant in  Berlin in 2007. The donor was immune to HIV, and as those cells were transplanted, so was the immunity.

Famed AIDS researcher Dr. Jay Levy, who co-discovered the HIV virus, said this case opens the door to the field of “cure research,” which is now gaining more attention. “If you’re able to take the white cells from someone and manipulate them so they’re no longer infected, or infectable, no longer infectable by HIV, and those white cells become the whole immune system of that individual, you’ve got essentially a functional cure.”

I am all kinds of fired up about this incredible news.

There is great potential, and the idea of cure research is exciting. I would love to see if spill over into breast cancer. As Katie puts it, “I understand that HIV/AIDS and cancer are very different diseases.  But look at the progress that has been made over several decades.  In 1983, the idea that we would be deciding whether someone was cured or not of AIDS, that we would be debating how few cells mean cure, was unthinkable.  Back then, virtually everyone who contracted AIDS died of it, and in about 9 months from diagnosis.  Now the average survival time after diagnosis is 24 years.”

Survival time of 24 years. Remember when AIDS first hit the scene in the early 1980s, and a diagnosis was the same as a death sentence? Now, 30 years later, AIDS experts are talking about cure research? Amazing.

Why isn’t this kind of thinking being applied to breast cancer research?

I’m guessing the reasons are many, but can’t help but think that one reason is because we’ve made breast cancer so pretty. It’s one of the most heavily funded cancers in terms of research, yet as Dr Love points out, treatments and results are the same now as they were 30 years ago. I know, I know — cancer is incredibly complex and varied, not just in terms of the different types (breast, colon, etc) but within each type, there are immense differences. Then there are the differences in each person who’s diagnosed, as well as the differences in each cell. I don’t expect a panacea, but I do expect cure research.

It’s funny — not ha ha funny but peculiar — that in trying to de-stigmatize breast cancer, we’ve ended up trivializing it. The glamor disease is marketed as rosy, fun, and celebratory, when in fact, it’s deadly. And in the cases in which it doesn’t kill its victims, it nonetheless maims them and messes them up in untold ways. Even the “lucky ones” who “caught it early” and “enjoyed the best possible outcome” are scarred, physically and emotionally.

I saw this ad in a magazine recently, and had to rip it out and put it on my desk so that I’d remember to blog about it. This is what I’m talking about, people. 

Do we really need ads like this?

What does this accomplish, exactly? As a woman, this makes me mad. As a woman diagnosed with breast cancer, it infuriates me. And as a woman who has undergone reconstruction and is facing the hard truth that no amount of surgery will ever restore what I once had, it makes me want to strangle someone with my bare hands. Maybe I’ll start with those models then move on to the jackass behind the ad campaign.

If you zoom in on this dumb ad, it’s not entirely clear what’s going on here besides lots of skin, perky breasts, and a hand. This is what passes for breast cancer “awareness?”

Did the ad execs behind this think the hint of lesbianism would sell? Did they consider that the woman of color in the middle would be completely shafted should she be diagnosed, because black women die from breast cancer far more often than white women?

Then there’s the text of the ad: Connect, communicate, and conquer? Could this be any more vague and vapid? What the hell are they even selling? I had to look closely and read the fine print to see who put this ad out there. It’s on the very bottom of the ad — the Breast Cancer Awareness Campaign, which is run by Estee Lauder. Again, what the hell are they selling? Remove the pink-ribbon bracelet and this could easily be an ad for a plastic surgeon hawking breast augmentation.

I’ve had it with this side of the “awareness” campaign. Can anyone tell me what this kind of marketing does to actually  help our cause? I know the research dollars have to come from somewhere, but surely we don’t need naked breasts to plead our case.

A quick google search turned up plenty of these kinds of ads.

These last two are my favorite. The boxing girl, who I’ve written about before, because the idea of being a fighter when it comes to breast cancer is so pervasive, and the flip side to that idea being the ones who die from this wretched disease somehow didn’t fight quite hard enough and “lost the battle.” The “Expose the Truth” ad, from the Breast Cancer Research Foundation, because the “truth” has nothing at all to do with the model they chose to represent their message. The truth is, ads like these perpetuate the idea that breast cancer is a sexy, pretty disease.

Why can’t we have more ads like this?

Or this?

Or this?

Or this?

We sure don’t ever see ads like this, do we?