A Therapeutic Escape For Cancer Advocates

Miraval, Arizona, home to the ESCAPE Conference August 14-17, 2016

This is a super conference run by friends of mine from Bag It, a wonderful nonprofit, in an amazing setting of beauty and tranquility and challenge for those doing cancer advocacy. Check out http://escape4advocates.org I was lucky to go twice, but will miss it this year.

Here are some questions to help you decide about attending from their home page.

Is escape right for you? Are you…

• On the front lines of cancer advocacy as a professional or volunteer survivorship advocate?
• Affiliated with a nonprofit cancer organization?
• A patient educator, navigator, social worker, blogger, research reviewer, community outreach/support group leader or engaged in other advocacy work?
• Seeking to gain productive collaborations and powerful partnerships with fellow cancer advocates, industry representatives and other stakeholders?
• Wanting to know more about how to effect change in public policy on a local, regional, and national level?
• Looking for ways to combat compassion fatigue and prevent burnout?

Let me add a few more.

• Want to stay in a setting where there are no cell phones allowed in the public spaces, no tipping, great food and fresh juices (all included with the cost of your stay), amazing landscapes, incredible classes, world class spa treatments, saunas, pools and much more, and most importantly a 3 day meeting with inspiring and powerful folks to learn from and to share your cancer advocacy journey. 
• Check out the agenda here. These are all great speakers. 
• This is being held at Oprah's favorite spa: Miraval! Do I need to say more?

Wish I could go again, but if you do go, let me know about your experience.

World Cancer Day and The Role of CLL (Chronic Lymphocytic Leukemia)

Friends,

February 4th is World Cancer Day and there is so much we can do.

Visit their website: http://www.worldcancerday.org and learn the many ways that we can help ourselves and help others win the war on cancer.

Those of us whose lives have been touched by CLL can do even more.

No one wants cancer, but we can still squeeze some goodness from the malignant clone in our bodies.

Unlike many more aggressive cancers, CLL almost always gives us time to learn about our disease, to get the support and knowledge we need and to make a plan.

Check out our welcome video if you haven't seen it, and even if you have, visit it again in the bottom right corner on the home screen.

I watch it regularly. It helps center me.

Another weird advantage we share with other blood cancers is that our cancer is easy to sample, to biopsy. Unlike solid tumors that usually require a scalpel or at least a guided needle biopsy by a trained interventionalist, we can easily share samples of our cancer with the lab by visiting any competent phlebotomist.

Hence, CLL and other liquid cancers such as CML (chronic myelogenous leukemia) are the poster children for the development of biological (think monoclonal antibodies such as rituximab) and targeted non-chemo therapies such as imatinib or Gleevec for CML (the first truly targeted therapy and a true miracle drug) and the game changing oral medications, ibrutinib and idelalisib for CLL. And more are coming soon.

These breakthrough therapies were developed in leukemia first because our cancer is so accessible and so easy to study.

Those covering the cancer revolution may give more press to the big four cancers: breast, prostrate, lung, and colon, simply because of their overwhelming numbers, but we are where the revolt began against accepting the old limits.

We changed the paradigm. We lead the charge.

And we will remain at the bleeding edge of the therapeutic revolution if we are willing to share our blood with the researchers.  It is because of these treatment breakthroughs that CLL won the strange award of CANCER ADVANCE of the YEAR awarded by ASCO (American Society of Clinical Oncology) in 2015.

So please give your blood if asked for research.

Support us at the CLL Society in our quest to support and inform others: http://cllsociety.org/donate-to-cll-society/

Support the researchers.

We are getting close. I can smell a cure.

Wishing us all the best for 2016

Stay strong.

We are all in this together

Brian Koffman

Volunteer Medical Director of the CLL Society

http://cllsociety.org
http://bkoffman.blogspot.com

Cancer Does Not Define or Limit Us

I read this obituary notice today and it struck a note of defiance and wisdom that I wanted to share:

YAKIMA - “When you write my obituary, do not say I fought a courageous battle with cancer.”

That was the repeated demand made by Dave Clark, who was diagnosed in the 1980’s with Chronic Lymphatic Leukemia (CLL). He wasn’t joking. For once. He nevertheless fought the CLL successfully for more than 25 years.

David Bruce Clark would have completed his 68th year on Sunday, October 13, but passed away the day before on Saturday, October 12, 2013 in a Yakima hospital."

We are all much more than our cancers. When we are remembered, and more importantly, as we walk though our lives, we want to be recognized as life partners and lovers, as parents and children, as family, as friends, as co-workers, as neighbors, as congregants, as citizens, as adventurers and travelers, as helpers, as confidantes, as advisors, as advocates, as teachers, as writers and readers, as speakers and listeners, as sharers, as jokesters and musicians and artists, as the friendly stranger, as the people we are are, and not the mutant clone that wants to take us down.

As did Mr. Clark's family writing his obituary, it is OK to mention our cancer battles, especially if others can learn from our struggles, but I would agree with the late Mr. Clark and so many other patient advocates that came before us fighting their varied chronic morbid diseases, please leave out the words courageous and inspirational. It is what we must do. It is not as if we have a choice of diagnosis.

Cancer is a real and daily part of our lives.

But cancer does nor define or limit us. Never will.

Be a Donor

Over the next few days, I have a chance to expose those who follow my blog to some chances to make a difference in the world. 

First and with my heart leaping to exploit this unique window of free opportunity,  I am going to be trying with increased vigor for the next few days to do what I can to get people to register to be a bone marrow donor. We get so few  chances to do something so completely and blindly good for a stranger. Seize it. Now would be good. See my prior post for details. No pain No expense. Just a deeply satisfying feeling.

I will be fussing with adding a widget to my blog to help automate the registration- wish me luck.

In the meantime, this caught my eye for fellow cancer survivors and maybe more: As Rabbi Wolpe said: "We are all in remission, it is just that some of us know it."

http://www.cancercare.org/get_help/tew_details.php?tew=emotional_041409&ret=/get_help/tew_archive/emotional_concerns.php&origin=enews_0609p

There will be more to come, but I don't want to dilute this special chance to be a donor.

Soon. I will return to my blog's root- how my individual story may illustrate the risks and benefits of my chosen path for others making their diverse decisions.

For now, I want to be universal, as I might not have unique story to tell if someone unknown to me, had not made a choice to be a donor- to serve the stranger.

"EVERYTHING IS CONNECTED"  

Tom Wolfe