MARCHING ON!

Greetings loyal readers - sorry for the long delay!  I am doing well - still doing taxol (with attending hair loss - ah the scarf option!)  and loving my sabbatical!  Researching support for students on the autism spectrum at community colleges is exciting and challenging.  Will be traveling to Pittsburgh in a week to an adult ed conference (COABE) to present about my research journey, and to visit with my brother and sister in law living in downtown Pittsburgh.  (send messages - NO MORE SNOW!!)

I have been excited that I'm able to maintain focus on my sabbatical research while staying home by the wood stove!  I am actually quite focused - with a schedule to work on the research at least 5 - 6 hours a day.  I've read so many fascinating articles, and am planning visits to several colleges concerning support for students with autism.  I'm excited that two of my former students have agreed to be interviewed about their experience BCC as students with autism. 
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I find that this time to research, read and reflect has been very calming - I love having the time to pursue a train of thought through hours with no interruption.  We live such frantic lives, and the opportunity for extended reflection is often unavailable to us.  In this age of constant communication, we need to stay away from the phone, email and texts to allow our minds to take thought journeys.    Of course, this time alone also gives me pause to think about this cancer journey, and my good fortune with the experience.    I continue to be relatively pain free - few side effects from continuing chemo, and almost no physical effects from the remaining buggies in my system.  Another CAT scan next week will tell if the tumors are continuing to shrink - THINK SHRINK, friends!

"If winter comes, can spring be far behind?"  My mom, the gardener, quoted this line from Shelley's "Ode to the West Wind" every February - and as I view the now melting mounds of snow in our yard, I yearn for the coming thaw.  As our "living with chronic cancer" journey moves on, Beth and I are able to focus beyond the Big C, beyond that other shoe always waiting to drop.  We are living our busy and fortunate lives, thankful for the ongoing love and support of so many.  Will write sooner, I promise!  Happy International Women's Day!!

Greetings at Last!!

Hello Loyal Readers!  The holidays, a vacation in (beautifully warm) Florida, etc. has taken me away from regular posting.  I had a difficult event in late November - an allergic reaction to one of the chemo drugs I was on.  Carboplatin is a platinum based chemo - and the body can only take so much.  It had been such good news in November that finally, after a year of new tumors growing, and four different treatments, we were so thrilled that the tumors were finally shrinking with carbo and taxol.  After the allergic reaction, I can't have carbo any more - so we were worried about whether the tumors would continue to shrink with taxol only.  It was a roller coaster ride!

We did put the  possibilities aside and enjoyed our Florida respite - then came home to a CAT scan and good news - the tumors are continuing to shrink!

Otherwise, I am getting into my sabbatical research - it's great to be at home and learning so much about autism, deafness and dyslexia.  I also found out that the YMCA has a "Livestrong" program for cancer survivors - free!  So I will be having great workouts twice a week for 12 weeks.  I also will be doing Expressive Arts workshops for my Livestrong group.

So, dear readers, I continue with the ups and downs as a "survivor" - you never know where these buggies are going to take you - but I'm so lucky to have quality of life with my amazing partner/wife Beth.  Each day offers new opportunities for hope and creativity.  I promise I won't be so negligent this spring! xx

IT'S WORKING!!!

Greetings loyal readers!  YES, the carboplatin/ taxol regimen has significantly shrunk the tumors!  This is great news for us - buys me time to look for other treatments!  We were quite nervous, but feel a new path towards victory!

 



I have learned that I am among 2% of those with my condition (stage IV UPSC uterine cancer) who survive as long as I have. Wow!!  I want to know who that other gal in the 100 is who has survived!  And I extend sympathy to those who have lost this strange battle.  Will write more shortly!! xSal



BACK IN THE SADDLE!

Greetings dear loyal readers!  Sorry I have missed several weeks - unfortunate new developments...  despite four different kinds of treatment this year, my buggies have continued to grow - so I'm back in chemo.  THINK SHRINK!!   While this new growth (a significant tumor in my abdomen) is not the news I hoped for, I am thinking POSITIVE and am determined to evict these unwanted tenants.  This recurrent disease is indeed a challenge, but I am determined to beat the odds!

The good news is that I had my first carboplatin/ taxol treatment yesterday, and it went very smoothly.  Today of course is the steroid high day - I cleaned house and we worked outside in the yard.  We got our load of wood for the wood stove and moved it to stack for the winter.  We put away our deck furniture and trimmed some stalks as the garden goes to bed.  It felt so fabulous to be outside enjoying a wonderful fall afternoon!

So now at least the government is reopened (what a circus that has been).  This means that federally funded cancer research can again go on.  Of course, while 800,000 people went without income, the congress continued to receive salaries AND had their gym open!  What a country...time for revolution!

Being part of a huge national strike against this domination by big money is on MY bucket list!!  Until next week... xxx

When Cancer is Chronic...Focus on LIFE

So chronic recurring cancer is indeed a bit surreal!  Dear readers, I am truly doing fine - still working full time, living my life (with emphasis on LIVING!!)  The knowledge that these buggies are still there is the surreal part - will they grow?  Shrink?  MELT??

So I embrace each day and thank the universe that I am still here with my love Beth, our (now calm and happy) pup Hubert, our beautiful yard in the amazing New England autumn.

Our Unitarian congregation does much support work for programs supporting the homeless population in RI.  I remember so distinctly those 7 years at Travelers Aid - the many amazing folks I met whose lives had landed them in shelters and on the streets.  As we always said - most of us could be little more than a paycheck away.  Once homeless adults have at least a semi permanent place to live, opportunities for education and employment are of course key.  Programs like Amos House's Friendship Cafe and other training programs that put folks to work are major models to address homelessness.

But of course until we reform our political economy, and address the growing distance between wealth and poverty, and the gradual erosion of the middle class, we will only see MORE people pushed into poverty.

I call this the "melting middle"  !  And until we stem this melting into poverty, until we stimulate education and job creation, this global melting will spread and continue.

So I celebrate my continued LIFE and look to continue speaking out for social justice, jobs with justice and opportunity that doesn't pit the middle class against the poor.   So I'm going to hang around as long as I can to work towards this shared future.  More to come... I fight not only cancer, but the ills of our society!!

MIND BODY POWER!!

Well loyal readers, I went to see Dr. D today and found that indeed the big C is continuing to grow slowly in my spl

spleen, but he feels a new regimen - Avastin - will block further growth.  Avastin - clinical name bevacizumab - actually stops the growth of new blood vessels.  This will hopefully stop the growth of the spleen tumors.  So a new treatment adventure!  More days in the IV recliner - a chance to write, dream, draw and concentrate on SHRINK!! 

Of course, I wish there were no new growths, but it's what it is.  The great news is that I am continuing to work with Expressive Arts to bolster my immune warriors and to self heal.  I attended the Expressive Arts reunion conference several weeks ago, and was once again inspired by the amazing work being done by graduates of this wonderful program.  Research shows that Expressive Arts (visual, verbal, movement and sound) actually have a physiological effect - reinforcing the immune system and our ability to self heal.

I am reading an interesting book by a physician who has been studying mind-body connections and our ability to self heal.  The Doc,  Lisa Rankin, has done a great deal of research about stories of self healing and spontaneous cures.  She seems a bit of a self promoter (her picture on the book cover could be used on a dating site)  but the information is powerful. I continue to talk to my cancer and invite apoptosis for the dear little vampire cells.  Otherwise, I continue to work full time, try to keep up with garden weeding, and do my expressive arts work.  Thanks for reading - will try to be more regular!! xx