Archive for ‘cancer’

April 23rd, 2013

Guest Post: A Poem is Strong Medicine

by Susan

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.

 

 

January 24th, 2012

Now Updated: Cancer & Your Bones Sharing Hub!

by Susan

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!

 

 

September 14th, 2011

Announcing the Blood Cancer Channel on WEGOHealth.tv

by Natalia

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 2nd, 2011

4 Health Awareness Events to Share in June

by Amanda

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 Daya “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

January 4th, 2011

Health Activists Who Could: Make It Your Mission (Statement)

by Amanda
With the dawning of a new year comes the resolutions, and, in the WEGO Health community, we’re hearing a lot about Health Activist Mission Statements. Alicia Staley (star of Awesome Cancer Survivor and Tweeting as @stales) wrote a terrific post about creating a Health Activist Mission Statement.
Her Mission Statement is a testament to her power as an advocate and to her reach as an inspirational survivor:

“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!”

This month, we’re focusing on setting Health Activist goals, and helping set the stage for our success and impact as advocates in 2011. Take a look at Alicia’s post and think about creating your own Mission Statement. If you decide to make a statement, please leave a link to your post in the comments section so we can check it out and spotlight YOU!
May 7th, 2010

Spotlight: Greg Stephens, The National CML Society

by admin

Spotlight on: Greg Stephens, founder of the National CML Society

Active in the CML community: since January 2005

What do you do when you’re not raising awareness about CML? I enjoy biking, the outdoors, spending time with family and friends, and playing with my son, Tyler.


You were active in the CML community for some time during the course of your family’s journey with CML—what made you decide to start a non-profit?


The thoughts of starting a non-profit for CML began about a year into my family’s journey. I was in the consulting business and my mom was a Human Resources professional. As we sat in countless waiting rooms, we began to wonder if we’d ever run across another CMLer (as we say in the CML community when referring to other patients). We also began to realize the lack of ground-based services offered to our community. Don’t get me wrong, there are a variety of services provided by organizations that are truly wonderful, it was just that there were no similar services offered strictly for CML families.


In August of 2007, with our family still reeling from the loss of our mom, Carolyn, the work began. Over the course of her journey, my mom would keep copious notes on her treatment, the things she felt emotionally, and those things that she thought would be so nice to see in the CML community. When we began to form the organization (originally formed as Carolyn’s Hope), we went straight to those notes and began to brainstorm on ways to bring those thoughts to fruition in the community.


Carolyn’s journey affected the entire family, and the journey doesn’t really end when you lose someone. It simply takes on another dimension. The Society (formerly Carolyn’s Hope) was just a natural progression for our journey, which continues today.

What would you most want to say about CML to someone who doesn’t have experience with it?


This is NOT the diabetes of Cancer! One of the biggest dangers we see in our community, and the healthcare community for that matter, has been complacency.



With the advent of TKI therapy (tyrosine kinase inhibitors), drugs such as Gleevec, Sprycel, Tasigna, and others have taken a disease that once had a very short lifespan, and made it one that is highly treatable in most cases. Again, most cases. The danger comes when nonchalance finds its way into how we, as CML families, view the disease, and even more so when the community we rely on for care doesn’t see this as something that serious. Every person’s journey is unique and it has its own subtleties. Yes, there are the common things, but one person reacts totally different than another, as so on. As an organization, we want the public to know that CML, although highly treatable in today’s world, is still a very serious matter and needs to be addressed accordingly.


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.

Be sure to check out Greg’s WEGO Health Profile and welcome him to the community!

Interested in learning more about CML and other types of Leukemia? Join the WEGO Health Group.

Already active in the CML Community online? Learn more about our upcoming Insight Groups.
April 19th, 2010

Spotlight: Annie, Living with CML

by admin

Spotlight on: Annie, author of the blog Living with CML
Active in the CML Community since: My son Steven was diagnosed March 2006
Occupation: I fix, build, repair, re-program, de-virus, and upgrade computers
What do you do when you’re not raising awareness about CML: Photography, travel as much as possible, catch up with family and friends
What prompted you to start blogging after you learned of Steven’s diagnosis in 2006?
Writing has always been an outlet for me. Most times when you go through something this huge in your life, others cannot possibly “get it” without having gone through the exact same thing. So no matter how my family and friends wanted to help, they couldn’t. Writing it down became a way to sort through and get rid of some of my frustrations and feelings of horror.
It was a very emotional and scary time and to tell the details over and over again as family or friends asked, took a lot out of me. Blogging was a way that I could tell it once and everyone who wanted to know could get the information. It also made it easy for those who did not know how or what to ask to keep up to date and deal with it in small chunks at a time.
What do you wish someone had told you when you first learned that Steven had CML?
That they had made a mistake and that he just had flu…
I am not sure that anything anyone could have told me would have sunk in or made a difference when we first learned that Steven has leukemia. Getting Steven to see Dr. Druker about five months after his diagnosis was the very best thing we could have done. Dr. Druker instilled such peace, hope and normalcy in us all. After that meeting, I listened to my son sing as we drove from Portland to the coast. That’s not an ordinary occurrence and it was truly a beautiful noise! That was a turning point in all our lives. A good one. I wish a “Dr. Druker visit” on everyone with CML.
Be sure to check out Annie’s WEGO Health Profile and welcome her to the community!
Interested in learning more about CML and other types of Leukemia? Join the WEGO Health Group.
Already active in the CML Community online? Learn more about our upcoming Insight Groups.
April 9th, 2010

Upcoming Insight Groups: CML Health Activists

by admin

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:

  1. Have experience with CML (whether as patients or caregivers)
  2. Stay current on news and treatment options for CML
  3. Are active contributors to online health communities about CML
If you’re interested in joining us on Tuesday, May 25th, the link below will take you to a short survey to see if this group might be appropriate for you:

CML Insight Group Survey