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.

CLL: Eight years and counting

"The whole world is a very narrow bridge. The important thing is not be afraid."

Rabbi Nachman of Breslov

Walking 30 feet up on a telephone pole at the Cancer Advocate Leadership Conference at Miraval

Thank you Escape and Bag It

It was eight years ago on September 7th, 2005 that I received the lab results that changed my life forever and was handed the diagnosis of the incurable (and soon after the added adjectives of aggressive and complex) chronic lymphocytic leukemia.

I have riffed on these anniversaries before, but this one almost passed me by un-noted.

Why? Because recently my focus has shifted from my personal struggles to my efforts to increase awareness of how CLL therapy is changing.

Yes, my personal future is still unclear. Yes, my CLL is still hanging out in my mesenteric nodes and a small percentage of my marrow. Yes, it has evolved into a nastier dance partner over the eight years of this waltz. No, I am not cured, just very well controlled.

Though I would obviously prefer to get off the dance floor once and for all, or at least have a more benign partner who is not always trying to trip me up, I am just fine with living with a well mannered cancer. Fine enough to spend more of my energies in shining a light that might guide others to similar happy outcomes. Fine enough to teach and advocate and support.

I am in the process of putting together my non-profit and working with other not for profits to move forward on the mission of smarter care for all those with CLL and related B cell cancers.

Of course, when I was at XViwCLL 2013 in Cologne last week, I paid close attention to the news and research that might impact my health personally. But the bulk of my efforts in Germany were outward. Please understand that that is not an entirely selfless or strictly altruistic act, but as many have argued before me, a recognition of how much healthier it makes me to share and spread my good fortune. It is so much better for me personally to look to the needs of the whole CLL community as well as my own.

So I almost missed my "anniversary" because my focus was on the future, not the past.

Stay strong.

We are all in this together.

I am moving later  this week, so my posts may be a bit more sporadic over the next weeks or so.

St Patrick's Day with The Fenians

The Grove in Orange County (the squeezebox player looks right at home in his kilt)

Orange County's own local Irish rock band, the Fenians. Such fun. Celtic Rock. A crowd that covered at least three generations Irish dancing and wearing silly green beads and shamrocks on their heads.

I took a much need break from writing a paper on thyroid disease to catch their show.

No Guinness or Irish coffee or green beer for me, but green tea to celebrate St. Patrick's Day. Does that count?

Cabbage, but no corn beef for this vegan.

I should have been working, but I can only stare at my computer screen so long.

Posts and video interviews on CLL will be more forthcoming here real soon when I finish what I must on thyroid, gout, anemia, and post trauma stress disorder. I won't even dare to share what wonderful tales of organ dysfunctions and disease states that I got off my to do do list last week.

Who said my life wasn't interesting?

Should be all finished soon. Until the next batch.

Here's a sense of what I enjoyed tonight instead of doing my homework or writing a post with gravitas.

"Won't you take her in your arms and tell her that you love her."

Won't ya?  I think you should.

Am I turning Irish? No, but I am married to a bonny lass with Irish blood and green eyes.

And I believe in being fully ecumenical when it come to celebrating holidays, especially the ones that are such fun and include live music.

A lighter note: HAIRSPRAY

Patty and I am just back from seeing Hairspray.

Cheap rush seats at the last minute. The theater was not full which was a shame.

I had seen it with the amazing original Broadway cast with Harvey Fierstein years ago and loved its exuberance. The touring company here in the OC did a great job with all that dancing and singing. A fun time.

My only regret is that I was the only one in my section dancing at the end of the show. I guess OC is just uptight.

Please forgive me, but I love musicals. Patty doesn't but even she was captured in the energy of this one.

A great escape.