Towards the end of 2011, I had gotten more involved with informally helping other patients. It all came from wanting to pay forward, all the support and help I had received from the likes of Beth, Yanni, Annie and Mandy/Tyler. I don't know where I would be without such incredible individuals that always took the time to listen, to offer up suggestions, and just be there to lend a supporting shoulder. I had been searching for a purpose, something that would allow me to direct my energy that I was using to find a solution to my problem, and also turn some of my thoughts into positive impact on other patients or care givers.
In the fall, I learned about the National CML Society. An organization who’s
single purpose is to provide support to CML patients and caregivers and advance
treatments and making connections between health care providers and
patients/caregivers. The more I thought about it, the more I felt that the
organization was exactly what I wanted to be involved with. I had informally
benefited from some of the same services they provide, and there is a need to help
patients/caregivers organize and make it easier to navigate everything CML. To
make a long story short, I started getting involved, and since I was one of the
first from Washington, I become the Washington state representative to the
National Organization. You can learn more about NCMLS here: http://www.nationalcmlsociety.org/
My involvement lead me to attend a patient summit in Portland, and then
later was asked to attend one in California. Both of the events was an opportunity
to connect patients/caregivers with others, as well as introduce them to the
NCMLS. In those two events, I met some wonderful people with powerful stories,
and some were truly inspirational. Like the women in Portland who has lived
with CML for 19 years, or the young 20 something guy who works for Disney in
California and had a transplant 3 years ago. It made me aware that we are all
over the spectrum in terms of our journeys, but we share some common paths that
all of us go through. Always in the back of my mind, is the loss of Tyler, and my
greatest wish is that nobody has to go through that ever again.
Around the same time, I was asked to do a story for Powerfull Patient, an
organization focused on helping patients and caregivers through knowledge. The
interview took place during the summit in Portland, and the finished product
can be viewed here. http://www.patientpower.info/video/hans-loland-a-cml-diagnosis-and-a-miracle-baby?autoplay=1
So my new mission, is to lend a hand to patients or caregivers who may need someone to listen, share what I know, and just know how to direct people to someone who can help when needed. Part of that will be reaching out to the Washington patients I have informally met, and start setting up some connection meetings in the area. I will also start using this blog, to start publishing more about research and resources available.
Oh, on another note, my PCR came back from my December visit in Portland, I am back to Weak Positive. I surprisingly wasn't too shocked about it, when you get to a low level, it doesn't take much to fluxuate from undetectable to weak positive. Of course I will hope to go back to PCRU next time, but my main goal is to be low and stable. Keep the course.
Happy New Year all, may this coming year be filled with happiness and great health !