Tag: Breast cancer

Cross-cultural Connection

Published on by MarilynLeave a comment

Recently I went to an outreach center in a different part of the city, a few blocks from the subway and behind the mosque in Roxbury. This area is perhaps the most diverse area in Boston. Here people from all over the world find their homes in apartments and houses. Residents are from Somalia, The Sudan, Ethiopia, Iraq, Senegal, Nigeria, Ghana and many more places. A large community health center in the middle of the community attempts to meet a myriad of health and social needs of residents.

We have tried to outreach to this community with health education for about a year and a half. We partner with a community based organization who are part of the community and committed to working within to make it a healthier and better place to live. I love this group. They are smart and funny. They work hard to create safe places where health messages can be heard and understood.

Tuesday was a breast health education session delivered to Somali women. They were all over 50 years old so in the age range where the majority of breast cancer cases are found to occur. Through interpreters and funny stories, poignant re-telling of hard events and sharing of different cultural beliefs we went through the session page by page. Time stopped as we gathered in a hot room talking, listening, learning. Between trainers, attendees, and a colleague we were from Nigeria, Ghana, Ethiopia, Eritrea, Somalia, and America.

This is where I learn why certain myths about breast cancer exist – for they don’t come out of mid-air, rather they are based in stories and events. This is where I learn that the women present believe that trauma to the breast causes breast cancer. “We come from a place where there is war” says one. “And the soldiers take their guns and hit us in the breast to keep us moving. Then we get breast cancer.” We talk about this and I’m not sure how far we get. It will take more conversations, more events, more relationship building to convince them that this is not founded on fact, on evidence, but on story.

This is a world I love. A world where interpreters and native speakers gather with others and connect over a common cause. A world where it doesn’t matter that the session was supposed to take 45 minutes and it took an hour and a half. A world of women from different cultural backgrounds, where I in my western clothing and they in their Somali clothing, head scarves wrapped tight, could begin the long dialogue of understanding. A world where skin color varies from pale cream to glowing, dark brown and every shade between.This is a world that resonates soul deep. My heart was full of the joy of connection and belonging. This is a world I know. A world I love.

It’s times like these that the early mornings and occasional mediocre days of the working world fade into the background, gloriously overshadowed by cross-cultural connection and with this, contentment.

Readers – I want to connect you to an amazing resource today! A friend of mine from years past has started a service called Kids Books Without Borders. Gail grew up overseas in France with a British mom and an American dad. And she loved to read! She has collected over 2000 books! 2000 BOOKS!!! And she now extends this love of reading and books to those who live overseas. All she asks is that you pay the postage. This is what Gail says:

Does your family live overseas and enjoy reading?  I have collected over 2000 books, available to you. I will send you a box of books to a US address or directly to you overseas.  All books are free. If shipped in the US, postage is also free.  If shipped overseas, I ask that you pay half the postage. Check out my website and submit a request.  I will then send you my booklist, so you and your family can shop!  

Think Christmas! Think Books! And then contact Gail at kidsbookswithoutborders.wordpress.com

Code Pink

Published on by Marilyn4 Comments

October is breast cancer awareness month. In my work this is an important month. It includes legislative breakfasts, educational sessions, screening events, and op-eds for newspapers.

Despite the plethora of information on breast cancer there are times when the information gets lost in the shuffle of life. Messages that would best go from our heads to our health get lost. In an effort to change that I’ve posted an infographic on breast cancer. It’s a different way of looking at what may be old information.

My hope is that you will not only look but act — if you’re young make sure the older women in your life see and know the facts; if you’re older make sure you are regularly screened; if you’re a survivor, share your story! We need to hear it.

Make October more than pink ribbons – make it action!

Code Pink

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A Logical Defense of Komen aka What’s the Fuss All About Anyway?

Published on by Marilyn33 Comments

This morning I defended arranged marriages and a mere twelve hours later, I’ve got another defense going! Here’s why:

Planned Parenthood is all a twitter! The Susan G. Komen for the Cure has pulled funds from the organization and Planned Parenthood is outraged!

For context I need readers to understand that I am a public health nurse who has worked for the past 10 years in preventive health, specifically breast and cervical cancer screening. I have worked in both Arizona and Massachusetts with low income women who are uninsured. Many of the health centers that I have been connected with receive Komen funds to work with this population of women. Rarely a day goes by where I don’t speak to someone on the phone who either needs to be screened or has breast cancer and cannot pay for treatment. This is a travesty.

“This money has saved thousands of women’s lives!”  is the rallying cry of Planned Parenthood in the wake of recent pulling of funds. Really? While I agree that since 2005 they have referred around 6,400 women for mammograms (a key to early detection of breast cancer) Planned Parenthood does not have the facilities anywhere in the nation to do mammography. Planned Parenthood does not focus on women over 50 where 95% of breast cancers occur. They cannot give direct services in relation to screening for breast cancer. It’s not what they are about.

Created for the love of a sister who died of breast cancer, the Susan G. Komen for the Cure mission is clear: “eradicate breast cancer by advancing research, screening, care and education.”  Their grant-funding reflects their mission and those who apply for their grants have to demonstrate a clear commitment to advancing the mission. I know. I have written several grants to the foundation and they go through a rigorous review process. (I’m happy to say the grants were funded!) The grant funding that people receive through Susan G. Komen for the Cure almost always goes to disparate populations to increase screening and early detection and decrease disparities that are present in our health care system. Anyone who ever receives grant funding knows that there is no guarantee of being funded forever. Funders can and do pull funding all the time for a lot worse reasons then being under a congressional investigation. And grant funding has always been politically motivated.  The money in question is almost $700,000, a minuscule percentage of the annual budget of Planned Parenthood of over a billion dollars.

But more than that, the reality is that Planned Parenthood doesn’t do breast cancer research or care. They serve a young population and focus on reproductive health. They are only able to offer one of the three prongs of early detection of breast cancer (clinical breast exams)and current research does not support clinical breast exams as an effective means to detect breast cancer. All told, there are thousands of other places that do reflect the mission of Susan G. Komen for the Cure, they are serving the underserved and they are desperate for funds.

Let’s look at the mission statement of Planned Parenthood: “Believes in the fundamental right of each individual, throughout the world, to manage his or her fertility, regardless of the individual’s income, marital status, race, ethnicity, sexual orientation, age, national origin, or residence. We believe that respect and value for diversity in all aspects of our organization are essential to our well-being. We believe that reproductive self-determination must be voluntary and preserve the individual’s right to privacy. We further believe that such self-determination will contribute to an enhancement of the quality of life and strong family relationships.”  There is nothing in this mission statement that demonstrates a commitment to eradicating breast cancer. Nothing to show any sort of commitment to early detection and screening. Nothing that would correlate with a foundation dedicated to not just finding a cure for breast cancer, but also finding the cause.

It is also critical to look at the prevalence of breast cancer. Breast cancer is most common in women over 50 years old. In fact, only 5% of breast cancers occur in women under 40!* Now how many 50 year olds do you know who are going for reproductive health visits to Planned Parenthood? Maybe then, the question to ask is not “Why are they pulling funding?” but “Why did they fund in the first place?”

In light of these facts it is illogical for Susan G. Komen for the Cure to continue funding Planned Parenthood for breast cancer screening and detection. Pure and simple, this is not where the money belongs – other organizations do it better and more seamlessly. If you want to fight for something, pick an issue that makes sense – like fighting for more funding for preventive care for the uninsured! Now that makes sense.

Bloggers Note: I was incorrect in my statement about breast cancer awareness information on the website of Planned Parenthood and the information is clear and factual. I hold to my original defense on this being an inappropriate place to go for breast cancer information and emphasize that most patients are in their teens to early twenties.

*American Cancer Society. Breast Cancer Facts and Figures 2011-2012. Atlanta, GA: American Cancer Society, 2011.
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Not Fully Baked

Published on by Marilyn11 Comments

English: pink ribbon

“When you lose your mother at 18 years old, you’re not fully baked. That’s what we do with our daughters, we baste them,bake them and roast them.”

 

The above statement came from the Master of Ceremonies, Candy O’Terry, at the All4One Alliance “Dress for a Cause” fashion show I attended last night. It was part of her story, a poignant story about a stoic mom who had advanced stages of breast cancer. Her daughter watched her body fail from metastatic disease and sat with her in a bleak hospital room during her last four days of life. Because of this single event in her life, she is committed to a cause – that of helping increase awareness and funding for breast cancer research and support for women with breast cancer.

Watching moms at the event because of their daughters and daughters because of their moms was moving. The mother/daughter bond is a unique connection. I’m the only girl in a family with four boys and so my mother and I spent a lot of time together. Imagining my life without my mom is like imagining winter without Christmas, or days with no sunshine. She always makes things better. She always serves tea. The two seem to go hand in hand.

I was baked and roasted in a different way because of the surrogate mothers called housemothers at boarding school. Some were not very good cooks. Others were outstanding and my mom was grateful. It’s hard to give up your kitchen to someone else. Hard to let other people try their recipes that are probably not as good as yours.

Last night’s event was just as I imagined in the post I wrote yesterday – there were many hurting people in a beautiful setting. A lot of loss was represented in the room. Loss of friends, moms, daughters and grandmothers. But this was a group of women who were not going to be defeated by the death of someone they loved. They were there for a reason, for a cause.  In honor of their friends, moms, daughters and grandmothers, they came together to raise money so the rest of us don’t have to go through the sadness of losing the cook before we’re fully baked.

Having a worthy cause to fight for gives meaning during the times of loneliness and questioning “Why?”. These women were examples of true friends and warriors. They could have wallowed and wearied in loss. They have chosen to be active and live effectively despite loss.

In many ways the setting was a world removed from much of what is comfortable to me. As much as I love to dress up and go out, I am more emotionally comfortable in a village dispensing malaria medication. But both places teach me valuable lessons about living with a purpose and recognizing even the hard days as gifts.

What about you? Have you lost someone to breast cancer? Is someone you love going through the grueling process of chemo and radiation? Would love to hear your thoughts in the comment section.

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A Sea of Pink

Published on by Marilyn5 Comments

Dedicated to Tami, Betsy & Chien-Chi – you are amazing!

It’s October and across the United States a sea of pink is in place. Pink ribbons, t-shirts, turbans, and signs all urge people to be aware of breast cancer. Susan G. Komen For the Cure sponsored walks and community health center high teas, featuring survivors and sweets, are all on board with the need to know about the disease and fight for funds to inform, as well as the continued need for research funding.

Daily I speak with women who have been diagnosed with breast cancer. They contact me because they have lost health insurance and are desperate for a way to pay for treatment. Our program is their last resort. Some come who have stopped treatment. They can no longer pay and so cancel their appointments. Their oncologists plead with them to continue, but without insurance they see no other way. It’s their voices that I hear when I see the pink ribbons. When women contact me, they are rightfully angry. They have usually lost their jobs, with the loss of their jobs they lose their insurance, with the loss of insurance they lose their treatment, with the loss of treatment, they ultimately lose their chance at survival. I’m not being dramatic. This is fact. It’s a domino effect. Their anger is not at me, it’s at a broken system, but I’m the one who is best situated to receive it. It’s a sea of angry pink.

While to those who have never been affected by breast cancer, all the pink may seem like a cute, little campaign, to those affected the pink ribbons are symbolic of their lives. There is a quiet desperation and determination to make sure women in the future have the best possible options for treatment and survival.

I have learned much from working with these women and I receive far more credit than I deserve from them. It is some of the reflections that I have heard that have affected me the most. My friend Chien-chi said this:

I wasn’t afraid of losing my breast. I wasn’t afraid of losing my hair. I was afraid of losing my mind!

Chien-Chi is Chinese and has used her experience to be a passionate advocate for women in her community to learn about breast cancer and take advantage of early screening. She has moved her passion from heart to paper, from paper to funder, and from funder to program. I am privileged to be a small part of her program to educate the Asian American community in the Boston area about breast cancer.

So I rarely use my role as a nurse in this blog but if you are a woman and you read this you can do a couple of things. As you see the pink ribbons, don’t think of them as pink ribbons, but think of them as women, each of whom are  going through a long journey and process. Read up and talk to your doctor about breast cancer and your individual risk factors. And lastly, if you don’t have insurance and need to be screened, be aware of this program: The National Breast and Cervical Cancer Early Detection Program. It is present in all 50 states, Washington DC, and 5 US Territories and 12 tribes. I know there are varying opinions of government-funded programs but I have worked in this program off and on for over 11 years and can say, without hesitation, that the amount of money spent on the program is nothing compared to the number of lives saved – lives of moms, sisters, grandmas and friends. So – that’s my shout out to the sea of pink that may surround you during October.