Monday, July 16, 2012

TRIPS, TOWERS AND THOUGHTS

So here we are, myself, Beth and friend Lisa, at the tower itself.  What an incredible structure, what a fabulous vacation.  Nothing like traveling to make you feel extra alive!

Beth and I, with our niece Madelin, spent a week in Paris and a week in London (friends in London for the year!).  Seeing the incredible beauty of these two cities, meeting amazing folks, getting an international perspective is always enlightening.

The struggle is world wide, of course - we cheered on a breast cancer march in London.  Returned last week expecting chemo (last one in this round) today, but found my immune counts too low - always something!  Am feeling fine, however, and hoping that one more infusion will again result in remission.

Am excited about working on the next One Book (community read) for Bristol Community college - The Immortal Life of Henrietta Lacks - by Rebecca Skloot.  This amazing book recounts the story of a woman in the 50's whose cancer cells were the first human cells to be kept alive in lab culture - and the cells continued to live and reproduce so that even today the cells are alive. (see hela cells in color at right)   These cells have been instrumental in research to find remedies for AIDS, polio, and many kinds of cancer.  The book also tells he story of the Lacks family and how they were not informed about their mother's cells use in research.  According to the book, the family suffered as a result, having been pursued for information, and have felt used and abused by the world of science.   As a low income African American family, they went through years of confusion and anger, finally getting help from Skloot to gain credit for their mother. This book is written with sensitivity and care - I highly recommend it!

Will try to blog more often, friends - thanks  for checking in!!

Saturday, June 9, 2012

CHEMO CAT CONTINUES...

Hi Patient readers - a long break, I know!  This is my "dress up" outfit for what I hoped was my final chemo for a while.   The little buggies have other plans - there was still evidence of some malignancy on my last CAT scan, so I they scheduled two more infusions - hopefully putting me back in remission.

Otherwise, I am still working full time and very busy! I am excited about projects at Bristol Community College - I am planning a"developmental reading institute" for instructors with limited academic background in developmental reading for August.   Was chatting with old friend Ginny who reminded me that supporting greater literacy is essential for a functioning democracy!   I do my small piece.

We are VERY excited that we will be taking another trip to England - we have friends (Mare and Lisa!) moving there for a year, so we will visit them in London.  We are also taking Madelin, our 11 year old niece, and will be going over to Paris for several days (her dream - what else for a  fashionista named Madelin...)  We are so lucky to be able to do this - will tell all as I travel!

Finally, I am expanding my consciousness through the "Expressive Arts Institute" I am attending at Slave Regina University in Newport, RI.  As I explore using visual arts, movement and sound to tap into the world of my unconscious, to creativity and the power of imagination to heal, I am energized and amazed at the revelations.  I am exploring the work being done to link art with healing - the powerful evidence that using expression, speaking from our right brain, from our intuition reinforces the immune system and helps to usher diseases like cancer to their natural demise.  I draw, dance and sing with these errant cells to guide them towards the cell death (Apoptosis) they deserve!

I promise to write again sooner - happily, life goes on oh blah di....   xxxxxx

Monday, April 23, 2012

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! 

Monday, April 9, 2012

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. 

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!!!