LAB RATS UNITE!

Hi faithful readers!  New adventure - clinical trial!  I'll be testing a new drug that carries chemo directly to my specific cancer cells.  Next week I'll be in Bean Town for four days for the first cycle of the trial - hotel paid by the trial!  I'll use the time to get back to my expressive arts work and to write write write.

So I'm a guinea pig.  or a Lab Rat.  At least my cancer will contribute to the effort to seek new more effective treatments.  From what I understand, this new drug targets so called "receptors" enabling the chemo drugs to get through to the cancerous cells.  It is still an assault from outside (chemo poison) but hopefully for stage 4 folks like me, these kinds of drugs will send my cancer cells into apoptosis without too many side effects (happy crossing over, you destructive little buggers)!
Hope they don't make me wear rat ears - but whatever it takes!!  Still working on my insurance research... will keep you posted!  And RI is about to pass same sex marriage -at last!  Homophobia is a cancer that needs to be eradicated NOW!  And thank you President Obama- yes we do want to live in the land of the FREE!

VICTORY AND NEW BATTLES!

Dearest Loyal Readers!   The great news is that finally I have succeeded in reversing the denial of my insurance coverage for radiation.  It took me 15 months, countless phone calls, e mails, faxes, etc. to finally get Unicare to recognize that they need to pay the $107,000 for my treatment!

I am starting a campaign to enact legislation that will require hospitals to pre authorize with insurance companies for any treatment that costs more than $500.  As I have written in the past, Women & Infants always checked for me, but RI Hospital did not.  I think of patients who have limited formal education, limited literacy, limited English, or are too sick to pursue this grueling task.  Cancer patients don't need the added stress of fighting their insurance carrier!!

I said with each contact that if I didn't get satisfaction, I would go to the media.  I still plan to see if anyone if interested in the story even though I eventually succeeded.  In this time of fighting for a functional national health plan we need to put the insurance giants in their place - they are private profit making enterprises that earn their profits by collecting premiums and NOT paying for claims. 

So that's one burden out of the way.  Friday I travel to Boston for a CAT and a dr. visit to see if indeed the big C is still hanging out in my system.  Think SHRINK and REMISSION!!  Ta Ta for now...xx

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!