BlogHer Susan Niebur of Toddler Planet was speaking with her lymphedema therapist during a session to reduce the swelling in her arms post-mastectomy when she learned that many cancer survivors cannot afford the compression sleeves worn to deal with the swelling brought on by lymphatic fluid.
Susan thought, "Can't afford lymphedema sleeves? Well of course that's true, isn't it, as they cost $100 and up for each arm, and it's important to have two sets - one to wash, and one to wear. I started rolling solutions around in my brain."
And out of adversity a great advocacy project was born. Creating a union between a foundation and a compression sleeve company, Susan is working to bring these sleeves to cancer survivors who can't afford the cost. And she is opening up this project to all of us -- and here is what you can do to help:
- Put it on Twitter and Facebook or blog about the project.
- Donate your connections, money, or time by leaving a comment on the post stating how you can help.
- Connect those in need with the project so they can receive these much needed sleeves.
I spoke with Susan about her new project on Wednesday:
So many people don't realize the on-going side effects from cancer and surgery. What is lymphedema and how does it affect your day-to-day world?
Three years ago, I had chemotherapy, radiation, and a double mastectomy to fight inflammatory breast cancer. Like many of us, I assumed that after that treatment, I'd be fine. Or at least after recovery, I'd be fine. I was surprised to learn that the act of having a mastectomy, the removal of a breast, also typically includes the removal of one or all of the lymph nodes under that arm. Now these lymph nodes normally act to remove waste fluid and proteins from the tissue in the arm, wrist, and hand. When the nodes are removed, the waste fluid isn't removed. I quickly learned that every time I exercised, cooked, or went outside in warm weather, my arm would swell, up to an inch in diameter. They call this "congestion" in the arm, and it feels about as great as congestion in your sinuses. And I don't know about everyone, but it makes me crabby!
Because of lymphedema, I limited myself to indoor activity. I stopped going to playgroups at the park, and I turned down the opportunity to coach my kids in preschool soccer. In fact, I pulled my kids from soccer entirely last summer, and we all missed it.
What is the role of lymphedema sleeves?
Compression sleeves play an important part in the treatment of lymphedema, whether it is a side effect of treatment for breast cancer or a stand-alone disease. Sleeves are made of knit, latex, and/or silicone fabrics that stretch as a person moves, allowing them to be worn all day, but they apply enough pressure that the arm does not swell as quickly, allowing people to be outside for longer periods, to do strengthening exercises, and to cook on or near a hot stove (but don't tell my husband that last part, okay?).
And the need for lymphedema sleeves remains with the person forever?
Yes. Sleeves typically cost about $100 each and have a typical lifespan of about six months. Each patient needs two sets (and this is important) because the garments need to be washed after each wearing to maintain the graduated compression in the fabric. Patients also need to do manual lymphedema therapy each day and/or see a professional for reduction of the swelling, but the sleeves are an essential part of therapy, so that the progress isn't lost the moment a patient steps outside.
The two places you're working with to bring these sleeves to people in need are the foundation Crickett's Answer, and the company, LympheDIVAs. Can you tell people a little bit about this organization and company?
Crickett’s Answer is a 501(c)3 nonprofit organization founded in memory of Crickett Julius. Crickett survived breast cancer only four months after her diagnosis at 39, but her mother and cousin are dedicated to helping other women enjoy their life post-diagnosis by providing wigs, mastectomy products, oncology/mastectomy/ lymphedema massage, facials, and other pampering services as a way to help women feel feminine and beautiful after losing their hair and/or breasts.
LympheDIVAs was founded by Rachel Troxell and Robin Miller, friends and breast cancer survivors who wanted to create a more elegant and comfortable compression sleeve. Rachel continued to build the company during her later recurrence. Even though she died two years ago, at the age of 37, her father, mother, and brother continue to grow the company in her honor and in the hope that LympheDIVAs’ compression apparel will continue to inspire breast cancer survivors everywhere to feel as beautiful, strong, and confident as Rachel was.
How did life change for you when you went from wearing the original sleeve to the LympheDIVA sleeve? I think for many people, when they think about appearance and cancer treatments, they think about hair. How do you think these compression sleeves will change the emotional lives of other cancer survivors?
From the first, I wore my sleeve and glove everywhere, but it was hard. More often than not, even well-meaning friends and former associates looked shocked when I approached with the thick work-glove like glove outstretched, and they thought the thick sleeve was a kind of cast. Strangers commented regularly, and everyone and anyone would ask brusquely: “What on Earth happened to your arm?” When I dutifully answered their questions, saying that I had had inflammatory breast cancer, had a mastectomy, and now wear these sleeves, yes, for the rest of my life, the questioners would react strongly, and conversation would be difficult. I didn’t like going out to meet new people anymore, and I stuck close to friends when we did. It wasn't good for me. I love being around people, and it got harder and harder to force myself to go out, when I knew I'd have to answer strangers' questions.
Now, I hear "Ooh, that's so pretty!" or "Girl, where did you get those tats?" as often as I do rude questions, as the pretty designs on my LympheDIVAs sleeves prompt people to smile first, and ask questions later.
I hope that by providing lymphedema sleeves to women who need them but can't afford them, it will help breast cancer survivors to continue to step out of the shadows and get back into life.
The announcement for this project falls during a difficult time for you. How has working on this project been as you wait for your next oncology appointment?
When I asked Crickett's Answer and LympheDIVAs to help other women in this way, it was at a time when I was finishing chemo for my third cancer, and I was happy to wrap up my treatment with this project, forcing something good to come of this horrible disease and its recurrence. I had hoped to announce it on Monday along with the news of clear scans (meaning that my cancer was still gone, and I would be in remission again). Well, I didn't get clear scans, but I'm moving ahead on the project anyway.
Cancer takes so much from us, but it cannot take away two things: love and the power to act. Nothing the oncologist can tell me on Thursday will change that.
Please help spread word about this very important project and help connect those in need with this incredible gift of tools that can aid in life with cancer.
Photo Credit of Susan Niebur: Laundry for Six.
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