Girls Love Mail

Throughout my long and arduous cancer “journey,” I was lucky enough to be on the receiving end of lots of mail. As much as I love email and texting for their speed and efficiency, there’s something just lovely about getting a piece of “real” mail. One friend in particular, a breast cancer survivor herself, sent me a card every week for a very long time, and seeing her familiar handwriting among the stack of junk mail made me smile every time (thanks, Jenny!). There were plenty of days in which that piece of mail was the highlight of an otherwise crummy day.

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Imagine my joy when a commenter on this little blog alerted me to a wonderful effort for cancer patients called Girls Love Mail. Founded by fellow breast cancer survivor Gina Mulligan, GLM collects handwritten letters of encouragement and distributes them to new members of the pink ribbon club and those going through cancer treatment. It’s simple and brilliant: you write a note and mail it to GLM, where it goes into a special envelope and is passed on to someone whose day needs brightening.

I just sent my first two cards to GLM and signed up to send something every week. Check out the GLM website; there are sample letters and ideas on what to say. If you’re impatient like me and want to just get right to it, here’s the address: Girls Love Mail 2330 E. Bidwell Street, Suite 200
Folsom, California 95630. Drop a card or note in the mail; it’s such a simple thing but it has the power to make such a difference.


If not Komen, then who?

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.


The Pink Well Challenge

Houston philanthropist Lester Smith was on the Ellen show this week. I missed it, and I sure am mad — I would have loved to have gotten the word out earlier about Lester’s latest project: The Pink Well Challenge.

Lester and his wife Sue are both cancer survivors, and their foundation is ponying up big cake for cancer charities. The Lester and Sue Smith foundation is giving away $1 million to small cancer charities across the country.

There’s a contest to see how the money is divvied up, and you can help. It’s easy, takes about 10 seconds, and all you have to do is vote. I’m not going to tell you which charity to vote for, but if you’re not sure which way to go, pick The Rose.

The Rose is a fantastic organization that provides screening and diagnostic services to underprivileged women, including a mobile mammogram service.Created by two women who were inspired by a breast cancer patient & advocate, The Rose has a simple goal:  “to reduce deaths from breast cancer by eliminating barriers and providing access to essential resources. Women who are insured help The Rose care for those who are uninsured.”

The Rose does an awful lot in the greater Houston area. According to their website, last year The Rose delivered 90,067 services, including 19,053 screening and diagnostic procedures at no charge to low income, uninsured women. This program provides breast cancer detection services to those who cannot afford the costs of these potentially life-saving procedures.

See why you need to vote for The Rose to win Lester Smith’s contest?

And you need to do it now — voting ends tomorrow. Man, I wish I’d heard about this sooner.

Please, do me a favor and go to the Pink Well Challenge website and vote. Click here or type the website into your browser yourself: http://pinkwell.org; either way, please vote. Click on the “VOTE NOW” link on the blue box. I would love to see The Rose get a $25,000 grant. That would totally make my day. 

Did you vote yet?