There are 100k+ health activists in our network who spend countless hours pulling together amazing events to spread awareness, hope and raise money.
AnnMarie is one of those patient advocates out there making a difference.
The following blog post has been written by AnneMarie and depicts a gorgeous event she held to help empower women. We may not have had the pleasure of attending the event in person, but if you take a scroll through the photos that were captured it’s easy to see what the energy was in that room.
This is a perfect example of a patient impacting the lives of so many! We’re happy to highlight this wonderful event here on the blog today.
By AnneMarie Otis
It all started when I was DX with lymphedema and I thought this sucks.
No really wearing this ugly sleeve sucks. I feel like a patient every damn day.
I wanted to still have style so I found Lymphedivas. And behold they had everything I needed in a sleeve-style, swag, comfy and they fit my personality.
I wondered how many others knew about them. As I researched, I found more and more stylish items to make this crappy disease a little less crappy and a little more fashionista.
AnaOno has a line that is so cute who can tell it has drain holders?
I had to share this.
So I contacted Lisa Butler of Syracuse Fashion Week and she said let’s do this. A fashion show where all the models have had cancer or are dealing with it and they will be rocking items that helps them through treatment.
BRILLIANT. Now to get the community on board.
I reached out to my connections. Within days, I had models that were willing to go outside their element and reclaim the runway. To regain a little of themselves on that catwalk. They were excited, nervous and honored to be part.
One of my dear friends, Donna, was ready to strut even though her Stage 4 diagnosis had taken a turn and she was in the hospital. Donna died one week before the show, but her spirit and energy were clearly there that day as we all felt her Bronx strong attitude.
The models needed pampering, so Lisa reached out to her team and Shannon pulled together a group of kick ass makeup and hair stylists. They all were eager to do whatever each model wanted this was about them, it was their day.
Our desserts were amazing and Half Moon Bakery and Bistro fit all taste buds with a regular, vegan and gluten free cakes!
Did I say that their services were donated!? Yes, the community believed in this so much they donated their amazing talent. And I have not even talked about what the models wore yet!
Each model walked twice and they got to keep everything, yes everything!
So the fantastic clothes that help them through treatment they do not have to give back, amazing right?
Circles of Change reminded woman that everybody is beautiful and the we are strong!
The show ended with a BANG. Two time cancer survivor came out with her chest painted in a black tutu. She empowered everyone that scars to not make us who we are not even for a moment.
Carmelo’s Ink City did a spectacular job with the amount of time he had!
This event gave woman hope that they can still be super cute even though they feel horrible.
NO, it will not cure cancer, but it can have them gain a little of themselves back. It brought together a fashion community to the cancer community raising money for Cancer Connects which keeps it in our town. Part of the money did go to Jill’s Wish too which helps on a national level.
It is events like this that show we can make a difference, we can take some of ourselves back from cancer and we can do it with style!
Reclamation Runway is about reclaiming yourself, regaining what cancer took away.
Finding yourself in the middle of fear, sadness and anger and turning that into power.
And that is exactly what it did.
Stupid Dumb Breast Cancer is my fierce and unconventional initiative to promote awareness and advocacy, with a special focus on how the disease impacts younger people. Bringing awareness to cancer in the late stages has become my prime focus followed by the after effects. It is time for a change. On behalf of my organization, I have been featured in area publications, appeared on TV, local radio, and Huff Post Live, and hosts a series of monthly events. Since its inception almost in 2012, Stupid Dumb Breast Cancer has raised and contributed over $270,000 to a variety of breast cancer organizations, including Stand Up to Cancer, Duke Hospital, Wilmot Cancer Center, the Upstate Cancer Center, Cancer Connects, and the Maureen’s Hope Foundation. I am currently serving as Community manager for wisdo.com and social media coordinator at LyfeBulb.
Knowing what you know now, What would you tell yourself when you were first diagnosed? | WEGO Health Guest Blog Claudia Schmidt, My Left Breast
Sharing what she would have told herself about the disease before she was diagnosed, Claudia recently wrote the following post as an open letter to herself about breast cancer. By sharing your learnings, you can help anyone else who might be going through a similar experience. She encourages all patient influencers, across all disease states, to write an open letter to themselves.
Today, Claudia and WEGO Health would like to pose this question to you:
Knowing what you know now . . .
What would you tell yourself when you were first diagnosed?
This is Claudia’s open letter.
An Open Letter to Myself About Breast Cancer
It is now a full 6 years since my diagnosis and subsequent treatment for breast cancer and I no longer feel a burning need to write about that time of my life. The fact that I’m 6 years out has somewhat released me. I don’t feel as strong a connection to breast cancer anymore and in fact am anxious to move on and away from it; to stop thinking about the past and focus on my future.
But, I was recently requested to write an open letter to myself about breast cancer, by Cure Forward. The mission of Cure Forward is to encourage patients to learn as much as possible about their treatment options, and to play an active role in helping them learn about, and access, precision medicine options.
So, I’ve been pondering what I would tell myself way back in February of 2010, when I first found the lump in my left breast. And because I’m a big list maker, I made a list of what I would tell my pre-breast cancer self about how to manage the journey I was facing:
- Being diagnosed with breast cancer is very scary. But don’t let your fear compromise your ability to take action. Listen very carefully and immediately write down everything your doctor tells you, you won’t remember it later on, trust me. Take a lot of notes and keep them in a notebook that will fit in your pocketbook so that you can bring it with you. In addition, keep copies of all your procedures and pathology reports in that notebook because you’ll refer to them many times over the next year as you’re on-boarding every new doctor you wind up seeing. In this day and age, it’s unrealistic to expect your doctors to remember all the details of your treatments, and you’ll need to be your own healthcare advocate, so keeping all this information in one place will prove to be very helpful.
- Ask a lot of questions. If anything is unclear (and much of it will be unclear) ask your doctor to explain the details to you over and over until you understand. That’s part of their job, to explain the details to you in laymans terms and if you’re not comfortable asking them, or feel you’re not getting enough information in an accessible manner, find another doctor.
- Bring someone with you to help keep you calm and occupied during the waiting. I found that when I brought someone to an appointment with me, they would often remember very different details than those that I focused on. At the appointment where I was first diagnosed, my husband, the finance guy, came with me. Throughout the entire discussion with my breast surgeon, he was taking notes and at the end of her explanation, he held up his paper to show me a little grid of dates that he had jotted down. His chart showed that if all went as the doctor expected, we’d be done with all the treatments before the end of the summer. It was very reassuring to see it in writing on a piece of paper and kept me focused on the fact that there was an end in sight.
- I was very lucky that my hospital had a dedicated breast care coordinator resource. I was given her name by my radiologist and was able to meet with her within a day after my lump was found. She was immensely helpful with a great personality and straightforward approach. If your hospital has a breast cancer coordinator, get to know her! Mine immediately recognized that I was the kind of person who likes to read and do research, and when I left her office I was loaded down with books, pamphlets and names of websites to research information for myself.
- My hospital breast cancer coordinator also told me about the Oncotype DX test which helps women with early stage Estrogen Positive invasive breast cancer determine their treatment options. The test looks at 21 genes from the breast cancer tumor and uses those markers to determine if the patient will benefit from chemotherapy, as well as the likelihood of distant recurrence (or metastatic cancer). Because my tumor was small and early stage, my surgeon thought that I might not even need chemotherapy. After my Oncotype DX test, the results showed that I actually had a very aggressive tumor with a chance of recurrence which indicated that I would benefit greatly from chemotherapy. Of course, I wasn’t happy about having to have chemo, but the fact that the test was done on my specific tumor, using my own genetic markers at least validated the decision.
- My hospital breast care coordinator also helped connect me with the hospitals BRCA genetic testing team. No one in my immediate family had breast cancer but I have 2 older sisters and a daughter and was worried that perhaps we had a familial genetic predisposition to breast cancer which would have meant that they were also at risk. The simple and painless BRCA test came back negative, with no evidence of a genetic predisposition which is still reassuring to me now, 6 years later.
- For me the best way to manage my fears during this time was to gather information and research all my options. Knowledge is power for me, and the more I know, the better decisions I can make. So I would encourage my pre-breast cancer self to learn as much as I can through reading, researching and talking in detail with my health care team. One of my favorite sites for information was and continues to be, breastcancer.org.
- Find the best medical team you can and if possible, try to find a treatment center that is relatively close to your home. If, like me, you’re going to have multiple surgeries, chemotherapy and reconstruction, you’ll heal better if you’re able to recuperate in your own home after treatments and procedures.
- Keep positive. Yes, I know it sounds pollyana-ish and you may not feel upbeat much of the time, but try not to dwell on the negative. You need to focus your energy on healing and getting through this. Cancer is a roller coaster ride, so learn to trust that if there is a dip there will eventually be a rebound.
- Find the right people to become your rocks, the people you trust to listen to anything you have to share. I realized pretty early on that if I couldn’t talk about my fears to someone other than my husband and kids, I wouldn’t be able to handle the panic and fear that I was experiencing. So I found a core group of friends who I could let it all out with. They were the ones I would call when I was really scared; the ones I could call up and say, “I don’t know if I can handle this,” on those very bad days. I chose these 3 because I knew that they would always be supportive, would listen and then would gently but firmly say, “Of course you can, it’s going to be really horrible, but you’re going to get through it,” and would make me laugh, after letting me cry my fears out.
I hope that this information will help anyone else who is going through the experience of a breast cancer diagnosis. The picture at the top of this post is one of the many beautiful walking paths I’ve recently found. Walking has become my emotional and spiritual release over the past few months and I hope you too, find your own path to health and peace of mind.
Claudia Schmidt, a working mom with two teens, writes a blog about life after her breast cancer experience in February of 2010. You can follow her at My Left Breast. Claudia’s work has been featured on BlogHer, BA50 and Midlife Boulevard. She lives in bucolic Clinton, New Jersey with her husband, two teens, and a menagerie of pets. Follow her on Twitter @claudoo, Facebook or Pinterest.
Today’s guest post is written by Karin B. Miller, editor of The Cancer Poetry Project
I was four months pregnant with our first child when my husband was diagnosed with cancer. How would I cope? I wrote poetry.
Back in college I was known for writing poetry and my friends teased me about not having to interview with potential employers. “You don’t need a job: You’re going to be a poet.”
Practical considerations had to be taken into account, however, and my career evolved from corporate communications to magazine writer and editor — with nary a poem in sight.
But my husband’s diagnosis compelled me to write poetry. No other type of writing even occurred to me. After all, as author J. Arroyo says, “Medicines and surgery may cure, but only reading and writing poetry can heal.” Read a poem you relate to and you no longer feel alone. Write a poem from your experience and you feel the healing begin.
Mostly, my poems reflected my fears: Why Thom? Would he survive? Would I raise our child alone?
Fortunately, we learned that Thom had a “good” cancer — testicular, although for him it meant less about his testicles (hey, I was pregnant, right?) and more about the football-sized tumor sitting in his belly. And chemo, harsh as it can be, was a godsend, completely smiting that tumor over four-plus months — just in time for our baby’s arrival. The bald daddy holding the bald daughter: In my mind’s eye, that’s a cherished image.
Yet I kept writing poetry — not fearful, angry poems, but poems of life and babies and celebration. My favorite? A short ditty about Thom climbing out of a canoe, a bouquet of fish hanging from his hand, the pink returned to his cheeks.
And then one morning, I awoke with a big idea: a book of poetry written, not only by patients and cancer survivors, but by spouses and partners, family members, friends, doctors and nurses — absolutely anyone affected by cancer.
Over the next year and a half, I founded, announced and marketed The Cancer Poetry Project. And the poetry poured in — approximately 1,200 poems from which my editorial team selected 140 for the book. The resulting national anthology won critical acclaim, a Minnesota Book Award, and today, is bought by and for cancer patients, their loved ones and their caregivers.
Looking back, when I made that first call for submissions, I didn’t fully appreciate the power of poetry: Cancer doesn’t just move published poets (or even former poets like me) to write poetry. Cancer can move anyone to write poetry. In fact, about one-third of our poets had not been previously published. And a handful had never even written a poem before.
One breast cancer patient heard about the call for poetry, wrote a poem, and sent it off. Her amazing poem, “Farewell to Hair,” inspired the book’s cover image of a nest with three robin’s eggs. Another woman, a social worker, had written a poem about the death of one of her hospice patients, then tucked it away. Ten years had passed when she heard about our call for poetry. Her poem, too, was published in the first volume.
Today, more and more people are discovering the power of poetry to help and to heal: Hospitals, clinics and cancer organizations like Gilda’s Club offer writing groups for people touched by cancer. The National Association of Poetry Therapy is a resource for individuals and groups interested in poetry therapy. Books like When Words Heal: Writing through Cancer by Sharon Bray and Writing as a Way of Healing by Louise Desalvo offer guidance. And physician and poet Dr. Rafael Campo is a major proponent of the power of poetry.
Getting started writing is easy: Read a few poems, maybe a couple by Billy Collins — his plainspoken approach to the everyday will give you permission to get writing. And don’t feel you need to rhyme. Rhyming isn’t required — that’s just what your third-grade teacher told you; I never rhyme. Just let your words flow. Write a poem or two; then later, return to your poem to read it aloud. Does it sound right? Is every word the best word you can use? Does the poem communicate what you’re trying to say? Most important, does it make you feel better for having written it? If the answer is yes, that’s what’s called good medicine.
Karin B. Miller is editor of the award-winning anthology, The Cancer Poetry Project. To learn more, order the book or preorder The Cancer Poetry Project 2, expected out in April, please visit www.cancerpoetryproject.com.
As we continue to strive to empower Health Activists and create features that appeal to you, WEGO Health is excited to announce our updated Sharing Hub – “Cancer & Your Bones.”
We heard your request! Based directly on Health Activist feedback, we have revamped our Sharing Hub, “Cancer & Your Bones”, to include easy social sharing tools.
This sponsored Sharing Hub features videos from some of the country’s leading cancer physicians, Dr. Adam Brufsky and Dr. James McKiernan, and Alicia Staley and Joel Nowak, breast and prostate cancer Health Activists. This video presentation focuses on the importance of identifying and treating bone metastases, specifically around cancer.
To access the new Sharing Hub: “Cancer & Your Bones” visit: http://bit.ly/yJm5Iu
Know others in the cancer communities who might be interested? Please invite them to visit http://bit.ly/yJm5Iu
(As you requested, we’ve also included a few easy ways to share the video presentation directly from the new Sharing Hub!)
We hope you’ll take a few minutes to visit “Cancer & Your Bones” and share it with others!
We have launched a whole new channel on WEGOHealth.tv dedicated to sharing Blood Cancer information, treatments, awareness, and the awesome Health Activists within the online community! This week’s videos feature Health Activists sharing their wisdom and experiences with Multiple Myeloma, Chronic Myeloid Leukemia and Acute Myeloid Leukemia.
In The Food Portion Trick, Lori, of Riding the Wave Multiple Myeloma, talks about her experience as a Multiple Myeloma caregiver. She shares tips on how to improve the spirits and diet of a loved one battling Blood Cancer. Watch her video here:
Diagnosed with Chronic Myeloid Leukemia at 23, Kayla, of Our Nation Family had trouble understanding the treatments her doctors advised her to get. In Procedures, Kayla explains two complicated procedures that can be daunting for the newly diagnosed. Watch her video here:
Diagnosed with Acute Myeloid Leukemia, subtype M3, Shelley of Life’s a Beach Blog, was suddenly faced with battling a challenging and rare illness. In Your Support Network, Shelley discusses how to build and care for a support network of doctors, family and friends to get you through these trying times. Watch her video here::
Do you or a loved one suffer from Blood Cancer? Check out our new channel here. We’re excited to share even more content on this channel in the future and want your input on what videos you and your community would like to see next! Swing over to our brief Blood Cancer Survey and weigh in on future content.
June is here and with it comes a collection of health observances that you can learn about and share with your community. Even if your community’s awareness month, week, or day falls on another part of the year – we hope you’ll join the WEGO Health Community in highlighting these health communities and the Health Activists that lead them!
First up is the fact that June is Men’s Health Month! This is a great opportunity for all health communities to zoom-in on how men are impacted by the condition or health focus in particular. It’s a good chance for us all to band together and encourage the men in our lives to be their healthiest and get involved in prevention, care, and best practices when it comes to daily health and more specific health conditions. Who are your favorite male Health Activists? Why not feature their work in your blog or community this month as a testament to the great work they are doing? As awesome Prostate Cancer Health Activist Darryl Mittledorf, LCSW, reminds us – this month it’s important that we keep in mind all of the men who are experiencing health concerns or conditions and may not be open and forthright with their experiences or have the support they need. Darryl says, “Gay men constitute approximately 7% of all cancer patients. And hardly more than 50% of all adult men are married. Men’s Health Month is a great time to remember that some men are facing health issues, isolated or alone, and can prosper with peer support.” How will you incorporate men and men’s health issues into your community this month?
Later this month on the 19th is an important day not only here in the US but worldwide as World Sickle Cell Day draws near. Sickle Cell Disease is a condition that affects many around the world and your community may have more in common with the SCD community than you thought. Why not learn about SCD and share a bit about it with your community? Health Activist and creator of Sickle Cell Warriors, Tosin Ola, tells us how important awareness is for those living with SCD, “This year the focus of Sickle Cell Warriors have been educating ourselves and then educating others. There are so many myths and misconceptions that surround sickle cell, and most of our discussions have revolved around debating and learning about these beliefs, where they come from, and if they are true or not.” What does SCD have in common with your community and how will you share more about SCD on June 19th?
On June 27th is National HIV Testing Day. While amazing advances have been made in the HIV/AIDS community, testing is still incredibly important to benefiting from these advances. Raising awareness for this day is important. HIV Health Activist and Executive Director of Volunteer Positive, Carlton Rounds, stresses the very individual nature of living with HIV: “Everyone copes with living with HIV in different ways. How we feel about living with the virus, the circumstances of its transmission, the social stigma, the losses connected to the experience; physical, personal, economic, emotional, professional, psychological, spiritual, political, and intellectual varies greatly from person to person. Though we share a common experience, the way each of us processes it is unique.” Will you discuss the importance of testing on the 27th?
And this Sunday, June 5th is National Cancer Survivor Day – a “celebration of life.” Why not take the opportunity to reach out to those you know online (and offline) who are living with or have survived cancer and tell them how important they are to you? Remember their struggle and how difficult their journey has been and share in their powerful achievement with them. Ask a survivor how they would like to celebrate Sunday and join them! If you can, try to read and share articles from survivors that don’t sugar-coat (or pinkify) the experience of cancer but get to the heart of the cause and community. How will you discuss National Cancer Survivor Day and how could this day influence your own health community?
We hope you will join us in learning as much as you can about these conditions and the communities that work every day to raise awareness and improve the lives of their members. Supporting your fellow Health Activists is a great way to expand your reach and work together to do big things for the online health community in general. Tell us how you’re celebrating or commemorating this June and we will be sure to feature you and your work! Let us know what you’ve learned and how you’ve share with your community!
Click here to check out our 13 Ways to Get Involved This June and check out our full Press Release here
“As a Health Activist, I will work tirelessly to motivate, educate, and inspire others in the cancer communities to achieve their best health. By sharing my personal experiences with others facing a cancer diagnosis, I will do my best to improve their treatment and survivorship experiences. I will reach out to all cancer community partners including health care providers, pharma companies, and medical institutions to ensure everyone experiencing a life touched by cancer will always have the best resources and support available to them. Cancer can’t beat a Community!”
Active in the CML community: since January 2005
If you’re interested in starting a CMLConnection group in your area, you can get in touch with Greg and the National CML society here.
We are holding online focus groups on Tuesday, May 25th for people who are active contributors to the CML community online. These groups are being held on behalf of one of WEGO Health’s sponsors.
Focus groups will be held at Noon, 4PM, 6PM and 9PM Eastern Time on Tuesday, May 25th. Each session will last one hour and is held remotely. Participants can join from anywhere in the country, but will need to be online and on the phone at the same time in order to attend the event.
All participants will receive a $25 Amazon.com gift certificate, and we’ll also make a $25 donation on your behalf to the National CML Society.
We’re looking for people who:
- Have experience with CML (whether as patients or caregivers)
- Stay current on news and treatment options for CML
- Are active contributors to online health communities about CML