EXPRESSING LIFE

Greetings Dear Readers!  So three infusions are done in this latest adventure - feeling pretty well, fewer side effects, hopeful for outcomes (immune numbers heading downstream!)  This weekend I will begin the three weekend series of Expressive Arts Facilitator training at Salve Regina University in Newport RI.  This will extend the work I have done with the Expressive Arts/ meditation workshops carried out by Sandra Salzillo Shields at the Women &Infants Women's Oncology center in Providence.  Her work helped me realize the incredible power of both meditation and visual expression during the healing/recovery process.  I am thrilled to be moving ahead with this experience.

As loyal readers know, I have been extremely fortunate with results of the medical treatment (chemo and radiation), experiencing few of the severe side effects with which patients often suffer.  I have had such amazing support from friends and family, especially my spouse Beth, who keeps me behaving myself (most of the time!)  As I continue to move ahead on this "chronic recurring cancer" path, I have realized the absolute importance of living dynamically:  greeting each day open for full life experience, for creativity and action. 

I am exploring the various paths of visual versus textural communication, and the power of images beyond words.  I expect these workshops will provide rich resources for many aspects of my public life, as well as giving me ideas for my personal journey with visual expression.  (this image comes from another expressive arts program called the Mandala Center in Colorado.) 

As I move ahead into new phases of exploring ways to confront recurring cancer, this will provide powerful tools to unlock our innate abilities to heal ourselves and understand how we can turn the overwhelming experience of cancer into an exploration of ways to extend our life force.  Plus I know the experience will be fun and freeing!  Will keep you posted! 

A LIFE LIVED - Dan Roy Rest in Peace

For more than two years, I've been prattling on about life and beyond - mostly my own, with this weird big C experience. During the past 40 years I helped to raise, first with their mother Arlene Roy, then with 'interim' partner Carol, finally including them in my family with my current spouse of 22 years, my Beth.  10 days ago, Dan Roy, age 48, died suddenly while performing his beloved music in Rangely ME.  It has pulled me again into deep musings about life.

Dan's life was full of peaks and valleys.  He suffered the difficult divorce of his parents at age 5 1/2, and the descent into depression by his Mom.  When the three came to live with me in Atlanta, he was a beautiful if troubled  8 year old, already playing the guitar.  He was a beautiful wistful child, finding solace and energy in his music.

During the 5 years we were in Atlanta - where I was part of the 70's radical hippie community - I remember so well going to hippie music festivals in Piedmont Park, during which Dan, merely 9 or 10 0r 11, would drag his big guitar on the makeshift stages and play with the big boys.  Those were the years too when he became enamored of the hard rock of groups like KISS and ACDC.  His mom, brother Jim, myself and Dan would put on cardboard guitar "concerts" lip syncing to the music blasting on our cheap stereo.

As Dan grew, his music matured.  After high school he took off with a variety of bands, playing small venue across New England.  This bar band existence was is life for 20 years - he became well known in the local rock circles.  This was also a time of some"valleys"; at points he lost everything, but always managed to put his life and his music back together. At a low point, he made friends over the internet with April, a local rock fan in Michigan who got to know Dan's music on the web.  Dan actually went to Michigan to stay with April for two years.  He hooked up with several local bands in the Detroit area, and played many clubs and festivals around the mid west.  He met Ted Nugent and Joan Jett, and developed his own following.

Sadly, April died, and Dan decided to return to is family environs in Maine.  He had gotten himself clean, and was determined to move ahead with his music.   In Maine, he connected with musicians and formed his new band, TriPolar.  During the last year and a half, TriPolar became a successful and popular local band, with plans to move beyond New England.  Dan was performing with TriPolar when he experienced a massive heart attack that took him from us.

This past Friday, Dan's brother Jim, his woman friend Jess, his nephew Avery and his uncle Rene led an amazing celebration of his life and music.  Family and friends shared their experiences with Dan - his larger than life personality, his humor and good nature, his foibles and high jinks.  Rather than flowers, musicians were asked to bring their guitars.  At least 30 guitars spread across the chapel as we all celebrated his life.  We celebrated his recent success - he was happier than ever before, and at the top of his game.  He left us doing what he loved, performing on stage.

Dan often exasperated his family, friends, those who love him.  But always, his optimistic energetic hopeful spirit reminded us of how we adored his crazy energy, his zest for music and life.  I hadn't seen Dan for over a year, although we communicated through Facebook, and talked on the phone.  Dan, I wish I could see you one more time, feel one of your big bear hugs, hear that infectious laugh, that evil since of humor.

Losing Dan adds to my resolve, to live every day to the fullest with whatever time I have left.  As I head back into chemo this week, I will fight for my life to carry on with passion and hope as did my Dan.  I know you're up there with the big boys, wowing the best of them with your rifs, your original songs, your musical soul.  With me, my Danny, your spirit lives on. 

OCCUPY LIFE!! DANCING ON THE EDGE

Greetings Dear Readers!  I have been negligent again!  I don't know how many of you are still checking in - don't have any responses of late - but these notes are updates as the next phase of my life plays out. This recurring cancer reality did come as a bit of a shock:  I had felt pretty cavalier after radiation and was reveling in my "remission."   But it's not all that came with the revolving calendar. What we label as our "new year" (our fictitious parsing of passing time) has shown itself as time fraught with issues:  our contentious national politics; the continuing economic uncertainty here and abroad; the recent spate of storm disasters; this week a rash of senseless violence in various settings.  All of this leads me to realizes that there are social, economic and political "cancers" that are in dire need of figurative "apoptosis" (a natural conclusion and rebirth of hope for a positive future.) We seem to have few "treatment protocols" for these various sicknesses, however, I am increasingly inspired by the Occupy movement.   Think of capturing just a piece of the resources controlled by the 1% and committing these resources to curing cancer and other currently "incurable" illnesses, and of course addressing such underlying "diseases" such as poverty and lack of education.  This is what a truly human community could look like.

 Being back in the treatment world has truly brought me face to face with the realities of chronic recurring cancer.  I started a four cycle every three weeks dosage a week ago Friday.  I will be recounting some research about the advances that enable the very concept of "chronic recurring cancer" - seeing cancer as an ongoing condition that can be managed over time.  I have just read a great site that provided examples of many people living with recurring metastatic cancer.  This kind of information is invaluable to those of us in this  strange situation of uncertainty.  One of those quoted is Suzanne Lindley who is surviving metastatic liver cancer.   I thank her for this wonderful poetic description of our reality:

There is no better balance or perception of life than when dancing on the edge of a cliff. ... With each step there are ups and downs, ins and outs, the unknowns, the spontaneous energies of balance—death and life, good and bad, despair and hope—that are there to embrace. … For those of us who dance on the edge it is important to grasp the promise that lies in the next step as each one brings more options, better treatments, and very soon—a cure.
Wanna dance? 


Thanks so much Susan!! 
Quote retrieved from:  http://curetoday.com/index.cfm/fuseaction/journey.

IT's BAAAACK!!! New Adventures with Modern Chemistry....

It's BAAAAAACK!!   Jack Nicholson's evil face is a great metaphor for the little buggers now back in my system.  But I plan to be a
"shining" example of success once again!!

The wonders of modern chemistry will once more drip into me, with hopes of squishing the bugs and sending me back into glorious remission! 

The good news is that I'm asymtomatic, so I can continue to work and live my life, save for possible side effects.  I am truly learning this thing of "living with chronic cancer".

Beth and I are taking lessons from one of our heroines, Peace Pilgrim, who walked over 30,000 miles to spread the message of goodness in every life, and possibilities for peace.  Perhaps we will learn that in fact, that those formerly nasty cancer cells can become super health cells!!  You never know!

So I will be "occupying" the chemo center once every three weeks for a while.  Will keep all posted with thoughts and discoveries.  Your ongoing support, dear readers, is a constant blessing.  xxxx

OCCUPY HOSPITALS & INSURANCE COMPANIES!!! HEALTHCARE FOR ALL!!

Greetings all - Am approaching five months since being declared in REMISSION!!! Now I have to watch out because insurance is going to make me sick!  After my 9 weeks of radiation, I was referred by my original oncologist and prescribed by my radiation oncologist to receive 9 weeks of Intensity Modulated Radiation Therapy.  No one said - "check with your insurance to be sure this is covered!"  I completed my daily treatments under the mask, zapped 5 days a week, and was declared done.  Then I started getting bills from the hospital for radiation treatment - first one - $79,000; second one $59,000; most recent, $113,000. I called the insurance and a VERY icy call center gal told me that "the manual indicates that this is investigative treatment and will not be covered."  WHAT??  (I lost it at this point - apologized but told the woman how angry I was)  This gal responded that "this is the policy,  we're not the devil here."  I yelled at the poor call center gal and hung up. 

I found this wonderful photo on Facebook - my sentiments exactly!! 

Luckily I was able to finally get through to the hospital billing dept.  They told me that if the doctor sent a "medically necessary" letter to them, they would re-bill.  I also called the Mass. health support legal team. If I end up having to do an "appeal", thank goodness, this office will help me.  BUT CANCER PATIENTS/SURVIVORS DON'T NEED THIS AGGRAVATION!! 

I'm ready to OCCUPY insurance companies and hospital offices any day now!!  The hospital has actually been very friendly and helpful, but someone should have alerted me to this possibility.   So I have a new "cause" to fight for - let's be sure we save national health care and make it even better!  We can do this if we raise our voices and OCCUPY!!! 

ARE WE FREE AT LAST !!

Greetings all!  For two years I've been waging a struggle against the big "C' - Fifty years ago this fall, I became part of another struggle: the struggle for full Civil Rights for African Americans in the states that continued to enforce legal segregation:  the separation of people by skin color in public places.

The year was 1962.  It was a balmy fall day in Durham, North Carolina, when I agreed to go with a friend of mine at Duke University in Durham North Carolina to a meeting across town to hear about some demonstrations planned for that town.  With my friend Ginny Erickson, I took the bus to North Carollina College - a local state school for African Americans.  The meeting was planned by CORE, the Congress for Racial Equality.

I had never met an African American college student.  I only had limited knowledge of the Civil Rights movement, being the protected middle class white girl I was, but I was eager to understand.  The year before I had begun asking why our Presbyterian Church didn't allow black members. My parents were New England born and bred, but their lives had been as segregated from African Americans as any Southerner.  They had moved South when I was  years old, and easily embraced the Southern way of life, including legal segregation.  They said things like:  the South used to allow black slaves- it takes a long time for people to change.  They never allowed perjorative language against anyone in our house.  But it's not what you say, it's what you do.  I continued to be involved in social change activism, and it took many years to convince my parents that my activism actually grew from the values they introduced through both religion and family.

Returning to my initial experience, I had been  in a political science class with Ginny Erickson, a young woman already passionate about being active with Civil Rights efforts.  She asked me to come to the meetings, and my life was never the same.  Through the years, I have continued in my own small way as an adult educator and community organizer to uphold the goals of the Civil Rights movement - to join in social action efforts concerning rights for all, anti poverty efforts, and access to education. 

I will add, in this long post, that I am currently also getting involved in activism for cancer care:  access for all, including those without insurance, and protests of the control held by the profit motivated pharmaceutical companies who control experimental trials for new treatments.  The 1% has all the access to care they want:  the rest of us struggle with the iron fist of insurance.

Currently our so called "democratic" system is being threatened by the control of process by those with  extreme money and power.  To the 1%, the most needy are expendable, and should be silenced by the "crumbs" offered through our broken social welfare system.   Those of us in the "middle" are being squeezed, pushed down by those who want to maintain access to obscene profits, even at the expense of most of us.

So this is a book length post - but MLK day certainly got me thinking.  As I have pondered the possible limitations on my future by the big "C", I have realized how fortunate I am to have been able to do my own small part in efforts to gain full humanity for all.  xx

HAPPY HOLIDAYS & ON BEYOND THE BIG C!

Okay, loyal readers, I've neglected you terribly.  But I'll tell you all, life in REMISSION is a great space to be!  My life is moving on beyond the Big C - immersed in holiday chaos, and concerned about the sorry state of the world in general.  But - always the hopeful Sal - I am encouraged by the energy of the Occupy movement, by Arab Spring, by the end of "Don't Ask Don't Tell", and the signs of activism stirring here and there.

So HAPPIEST OF NEW YEARS to all my loyal readers - may the spirit of the universe bless our tiny speck in the river of time.  May we reach out to maintain and create community in the increasingly disconnected world (and I don't count Facebook, even though I use it!)  May each of you find love and fulfillment in spite of  the state of things.  xxSal