Dog and CAT for the Holidays...

We are thrilled to welcome our new pup, Hubert the Hound, to the family at 59 Ivan St.  This beautiful Blue Tick Coon hound came through PAWS, a national pet adoption service.  Hubert had quite a hard journey - captured and put in a "high kill" shelter in Tennessee, saved by a rescue foster mother - neutered, fattened up, medicated; three days in a transport truck to RI, a week quarantine - finally Dec. 21 came to us!

Hubert is affectionate and needy.  He is a bit of a scaredy cat after all the transition, but is settling in and loving his bed and toys!

It's great to have "new life" in our house since we sent Frankie the Beagle to the great dog park in the sky in November.  We were just casually looking at adoption sites, and Hubert's wonderful face caught our eyes - it was love at first sight for us.

Glad to have this project and distraction - still working and feeling okay, but learned that my tumor marker blood numbers have gone up in the last three months - not a great sign - so will be back on the table for another CAT  scan next week.  So the adventure goes on!  Exciting new research reported in the NY times gives all of us hope!  We need to use our genetic codes to give the message that those big C cells need to go to their "reward"!!  Apoptosis rules!

And of course I continue to fight the insurance company Unicare that is refusing to pay for my radiation!  What a world - stage IV cancer, yet a refusal to pay! 

Wishing all the best of New Years - and for all of us, peace, hope and progress towards the cure!!

Cruising into the Dark, reaching for the Light!!

Greetings all - The Holiday madness has definitely taken over!  Of course, each new season, each new month, each new day - these are my miracles.  We spent last evening decorating our new little charlie brown tree - the traditional ornaments, the sparkle of the lights, the stockings, the Santa and Ms. Santa plus elf - these chochkas of the season reminds us of our childhood holidays!  (Any youngsters reading this wont get the reference - think fifties. Ah the "Fat er Knows Best"ness of those occasions!)

 We just watched a hokey Christmas show called "Christmas with the Fitzgeralds" about a totally dysfunctional (therefore normal) family dealing with multiple issues over the holidays" .  Neither Beth nor I had that kind of dysfunctional stuff so blatantly, but the pressure for "joy" and " merry"ness can be a bit overwhelming.  Nevertheless, I am embracing those themes I wish were the sense of the season - peace, love and hope - rather than "black Friday" and  the Christmas shopping extravaganza!

Just found out that Beth's cousins wife who survived breast cancer now has developed bone cancer - Need to reach out to her this week!  The support of others who have been through this adventure is so important to keep the emphasis on LIFE!!.    My holiday wish is for effective cancer treatment:  my resolution for 2013 is to devote time for cancer outreach.   C'mon, Santa - bring us a REAL gift!!

Go for another blood check this week - think shrink = I need for those marker numbers to go DOWN!!  Til the next post xxx

Reunion, Victory, CAT scan question

Dear readers - I'm sure I've lost you all!  Will send out e mails to reconnect!  Have had an amazingly busy fall - and relief that Obama was re elected.  Now the real work begins.  We have no illusions:  Obama is no radical, but has potential to guide the country towards progressive goals.  We HOPE.

Went to my 50th HS reunion - Thomas Jefferson HS Richmond VA - 1962.  TJ wasn't desegregated until the year AFTER I graduated.  I lived in the white bubble until I found my civil rights teachers at Duke.  Doesn't this look like the model 40's - 60's high school??

Work continues:  am doing much tutoring and recording case studies of challenged students - my work keeps me energized.  My energy level has been great - the last CAT suggested No Evidence of Disease, but Dr. D. is not sure.  Friday we will find out the real story.  Interesting note:  Dr. D. had me sign papers so they can use my tumor tissue for research.  Ah the tradition of Henrietta Lacks!

Am still fighting my insurance co. since they have denied paying for my radiation therapy.  Unbelievable!  They said the hospital could have used a "cheaper" form.  Having great vacations, Unicare CEO??

So I am pledged to keep this blog OFTEN.  Yea, I've said this before - but am back in the saddle.  Will be writing again soon!

A POSITIVE 1 %!!

Greetings dear readers!!  So I always thought I was part of the 99%, but am happy to be part of a different 1% - the 1% that survive my  diagnosis - stage 4 endometrial cancer.   I went to see my Doc who has transferred to Mass General  - am very happy to stay with Dr. D.  Yes indeed, I am  THRILLED to be a part of THIS 1%!!  Dr. D. said I can now officially use the word REMISSION!  The semester has started at BCC, and I love meeting new students, tutors and faculty who are also committed to supporting our challenged readers.          My goal with the Big "C" adventure is to now reach out to those still in treatment, still struggling.  Dr. D. also said he has confidence that I will stay here to see amazing new treatment options " - the genetic breakthroughs that may indeed be the "magic bullet" for cancer.   I will continue to research and report on the latest  new discoveries.   I also plan to continue my expressive arts work and hope to provide workshops for survivors still laboring under the "every 3/6 months tests" pressure.  We always are waiting for the other "shoe" to drop.  

I also plan to research what's happening to Medicare.  My new Cancer Nurse at Mass Gen was saying she is struggling to negotiate Medicare for her 80 + year old parents who just signed up for Medicare as they took care of their own insurance until recently.  Because they didn't sign up at 65 they are being penalized somehow.  These bureaucratic glitches are so frustrating to say the least...  

I am still struggling with my insurance co. that has denied payment for my radiation because they somehow see the treatment as "experimental".  I think I am getting through to them and will be able to settle this, but it's so frustrating to have to fight for coverage for Cancer treatment!  When will this country and our government wake up about universal health care!  

The good news is - I am still here to keep fighting the good fight - and happy to part of THAT 1%!!!  

MOVING INTO SCHOOL DAZE CANCER FREE!

Happy fall, dear readers!  Yes, Dr. D., my doc who has moved to Mass General, confirms that currently there is "No Evidence of Disease"!!  This doesn't mean "remission" necessarily - my tumor marker numbers are a bit high, but I'll find out this week if they are continuing to climb.  Cross fingers, toes, etc!!  Also, my pate is still pretty hairless - maybe I'm a new baldy style setter!  Guess I'll just make it a fashion statement!

I completed my wonderful expressive arts course at Salve Regina U. in Newport - what an inspiring experience!  I have already developed and presented a workshop about using expressive arts in education for student tutors at Bristol Community College - it was very well received, opening doors of perception for sure.  I continue to seek creative outlets, and to meditate - extending my meditation for several friends also battling the big C.  I realize there are so many of us struggling with this condition - certainly not an uncommon   journey these days.   We clearly need to open the pathways so that we can bring our internal healing strength to send those Big C cells into beloved apoptosis.

I move into my teaching months with this strengthened healing perspective - my students so often need healing of their lack of confidence in learning, their self doubt.  There are so many avenues for learning - the expressive arts provide roads less traveled yet full of promise.  As the entire BCC campus is reading "The Imortal LIfe of Henrietta Lacks" this year, I am excited about exploring this extraordinary account with students, especially those wanting to go into the health professions.  Rebecca Skloot demonstrates her expertise as a writer but more importantly her sensitivity and compassion for this family whose lives were caught in the contradictions of race, class and opportunity to learn and know.  The book brings to light the amazing scientific advances made possible with Henrietta's living cancer cells, while exposing the discrimination and exploitation of near recent health practices.  This community reading project brings so many parts of my life together - reading, writing and the world of cancer.  stay posted for reports of our adventure with this amazing story.    I am reminded of new ways to teach and share building on the ways my life has become so enriched.   More to come soon!

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!!

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

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