April 23rd, 2013
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.”
January 24th, 2012
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.
September 14th, 2011
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.
June 2nd, 2011
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!
January 4th, 2011
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!”
May 7th, 2010
Spotlight on: Greg Stephens, founder of the National CML Society
Active in the CML community: since January 2005
=&0=& 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.
April 19th, 2010
=&0=&: Annie, author of the blog Living with CML
=&1=&e: My son Steven was diagnosed March 2006
=&2=&: I fix, build, repair, re-program, de-virus, and upgrade computers
=&3=&: Photography, travel as much as possible, catch up with family and friends
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.
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.
Read the full interview here
April 9th, 2010
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.