Sunday, March 4, 2012

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.

Wednesday, February 15, 2012

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

Friday, January 27, 2012

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!!! 

Tuesday, January 17, 2012

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

Monday, December 26, 2011

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




Wednesday, November 9, 2011

AH THE WAITING GAME IS OVER - I'M FREE!!

So I had the strange and other worldly CAT Scan last week - it's the waiting game again until the doc tells me what they can see. AND AT MY DR. VISIT YESTERDAY - ONCE AGAIN I'M DECLARED CANCER FREE!!
 
And we"ll be going to North Carolina for the big feast day - maybe we can even walk in the surf!

Otherwise, am following several survivor blogs - a great way to network and give/gain support for our various projects.
 Am interested in the Occupy efforts:  the goals are radical and idealistic - building a consensus democracy movement - but like many, want to see a focused effort to make immediate change as well as dialogue concerning long term radical changes.  The "Teaparty"  has had success by targeting specific goals and influencing electoral politics.  The Occupiers can proclaim lofty goals, but without targets we may see the efforts swept away by a combination of cold weather, court action and street action. 
I don't feel we will get radical change in support for treating/ curing cancer until national support efforts are separated from the all powerful big Pharma.  Yes, there are celebrations, reports of many dollars raised, but many seem to be directed through efforts supported by Pharma - to promote thier own products.   Exciting new adventures to support new cancer research to be reported soon on this blog!

Celebrate, my dear readers whose support is so important!!  Together we can beat the bugs! 

Tuesday, October 4, 2011

ON BEYOND XANTHIPPE

So I,ve learned a new word... Xanthippe!  Check out this gal... me minus the rollers!!!  Me during  the last weeks of radiation!  ( Can't seem to turn off the underline - sorry!!!)  It really has been a strange and not so comfy adventure - like weeks on a tropical raft without shade...

But of course the treatment folks were grand - again I compliment them- to be so dang cheerful all day as you subject people to the rays...  takes a special kind of temperament.  Patients aged 6 to 90 parading through.   As noted in the past, I did meet many lovely folks - there is a definite connection as we await the rays.

But last week was the end of it - no more rushing home from work to the mask - no more bone deep fatigue, FREEDOM!!!  (You notice I've even given myself the fantasy red locks...

So Beth and I celebrated with an amazing weekend in New Hampshire at the Highlands Inn - an all gal spot on 100 acres of virgin (!) forest.    We were able to finally breathe free - share, laugh, cry, and absorb the wonder of the White Mountains.  And we did the Zip Line at Bretton Woods!  Nothing like flying down a mountain!   The sensation of flight if only for a few minutes, made me feel so alive - the exhilaration of the mountain air, the breath taking scenery, the fantasy of freedom from these recent adventures.  I am so fortunate that we could do this trip - and  move on to the days ahead.    So my word for the day is: DON'T WAIT!!!

 Of course, our next adventure might me camping out against Wall St. - that's another Zip!!  To be continued...