BETTER NEWS - MORE HOPE for the SEASON!!

Hi loyal followers!  I'm happy to say that the news while still not the best appears somewhat less dire than originally thought.  I had my first chemo, little to no side effects, and feeling okay. We have moved beyond shock to our usual hope and LIFE centered path.   Send those "shrink" messages out into the universe!

Meanwhile we move into the hectic world of holiday shopping etc.  We will celebrate with the Grossi, Cantone crew on Christmas day - with invited guests.  This should be as usual a merry gathering!  We can't wait to visit niece Sarah, her man Matt, the five kids now there, plus sis Susan and Tom after Xmas in Albany. (Sarah & I have the Christmas Spirit!!)

I am planning to be active once again with the American Cancer Society ASCAN - the legislative advocacy network.  We have an advocacy day at the statehouse to lobby for cancer based legislation such as greater support for research, more tobacco restrictions, etc.  In addition our Unitarian congregation, Bell St. Chapel, is keeping us busy with social action - Standing on the Side of Love.  We are thrilled with our new young woman pastor who is a strong progressive and already has increased outreach to our neighborhood and local social action

So!  LIFE goes on (yea!) and we are back on track fighting the buggies.  Much love for the holidays for all!

NEW & DAUNTING DEVELOPMENTS

Dear loyal readers - sorry I have been AWOL for a month - but we are dealing with daunting news.  Since my successful surgery in August, it appears that a new aggressive form of my cancer has become active - I have extensive new growth in my liver, and additional growth in the area of my colon.  In addition, the remaining tumor in my pelvic area has doubled in size.   I was doing fine (I thought) back at work and feeling okay.  Then we had a potluck at church two weeks ago, and that night I had deep stomach cramps - I thought I had gotten a touch of food poisoning.  I took some icky maalox type stuff, but this didn't help.  I emailed my doc to see if there was something stronger I could take, and he suggested I see the nurse practitioner in RI.  Then he called me back personally.  He had seen my last CAT scan (from October) and realized that this new aggressive cancer was on the move.  

Beth and I went to see Dr. D. in Boston on Friday - the news was not great.  Basically, Dr. D said that if I didn't get treatment, I would not survive a month.   With chemo, he feels I can buy time, but still suggested that life expectancy may only be several months - less than a year.

WHAT???  But I don't feel THAT bad - how could I be on the path to last days??  We are still trying to digest this news.  Right now, I'm scheduled to start adriamycin chemo next week, with  a second infusion in three weeks.  After that, I'll have another CAT, and we'll see what the prognosis is.  Meanwhile Beth and I are in shock, but focusing on living life to the fullest for as long as we have.  Sorry to bring cloudier news to my usually positive blog, but after all, life IS a terminal condition. 

Otherwise, the holiday season is in full swing - we have our little tree up, and are planning the festivities.  Most importantly, we want to celebrate LIFE during this holiday time. 

I WISH ALL MY LOYAL READERS A WONDERFUL HOLIDAY SEASON - REMEMBER, LIFE IS SHORT, SO DON'T WASTE A MINUTE!  KEEP DANCIN', MY FRIENDS!! XX

FALL IS HERE, THERMOMETER DROPPING!

MEMORIES OF SUMMER...

Greetings loyal readers!  Another long break in blogging - have been busy getting back to full time work!  Luckily, I have healed well from the extensive surgery in August and am on the job.  While the weather is bringing fall chill, I've had warm welcoming here at BCC.  It's great to be back working with students in the Reading Lab, and continuing efforts to build support for autistic and deaf students here at BCC.

Sadly, several friends and acquaintances have succumbed to various cancers over the summer and early fall.  These experiences of loss of course remind me of my good luck in surviving so far, despite my difficult diagnosis.  Increasingly I feel that the combination of my general good health (no chronic conditions other than cancer), my fabulous support from my wife Beth, her family, my family and



my family of friends have all contributed to my continuing quality of life.  Yes, I am able to greet my condition as positively as possible, thanks to hears of positive reinforcement from my irrepressible Mom.  I also credit my work with expressive arts, and ongoing use of medical cannabis.  Hopefully soon we will have official trials that will show the positive tumor reduction capabilities of cannabis!  I am on a chemotherapy break (yea!) and will have a CAT scan in November to determine the next course of action.  There is active cancer remaining, but hopefully is non aggressive and shrinking!.

So now we approach the new survival challenge - WINTER!!  I embrace this time of chill and dark as a time for snuggling in for reflection and more writing.  I won't have the privilege of sitting daily by the woodstove as I did during my sabbatical, but will retreat to my recliner by the fire whenever possible to contemplate life, survival and mortality!   (Also to continue seeking good cancer jokes and cartoons...)  Will write sooner - xSal

SURVIVING (TO INFINITY AND BEYOND!)

What a lovely time of year to recuperate in New England!  Since survival is about focusing on life and its inevitable cycles, it behooves me to see the amazing beauty in every season, even as the vibrant life of summer gives way to the glory of autumn transition.   I'm not sure why this 70 year old body is able to heal more easily than many.  Clearly I came into this adventure with physiological strength not available to many.  But there's so much more to it.

I was able to walk around our across the street parking lot five times today - getting stronger as I write.  I do have down days - yesterday was a kind of "blue" day, with unusual exhaustion and lack of initiative.  But a part of survival is allowing oneself to visit those places, to recognize the emotions, and move on. Like the Buddhist meditation advice when trying to clear the mind, allowing those emotions to pass by like leaves in the stream - acknowledging them but  observing as they pass on.

 

I think I am able to do this because I stay engaged with so many folks.  I believe a community of support is essential - a community that supports the condition but doesn't just view me through the lens of the big "C".  We cancer survivors are the same people we were before diagnosis, with just an overlay of consciousness about mortality and the need to appreciate each day, each season.

 

In addition, involvement in creative activities has been such a large part of this process for me.  And I say to those who say "I'm not creative" - everyone is creative - everyone can express themselves creatively through their strengths.  So I continue to move towards re-entry (thanks Buzz Lightyear - to Infinity and Beyond!) with applause for all who are my supportive family! xx

 

KATHERINE BACK HOME, SPLEEN IS HISTORY!

Greetings loyal readers - thought I had posted last week but apparently didn't confirm.  Yes!  I a spleen free, and Katherine the redoubtable hernia is back in her home.I had surgery at Massachusetts General hospital - what a marvelous institution.  My surgery team were grand, the nurses amazing, and the CNA's, cleaning crew and all friendly and efficient.No wonder this is a number #1 hospital in the country!

The purpose of these snips is to stem possible spreading.  I do still have a little active C, but hopefully with a bit more chemo, I'll be back in NED (no evidence of disease). 

I realize from this experience (Beth was able to stay in the room with me - we had an amazing view of the Charles!  Nothing so calming as watching sailboats slide along the river).  So I'm home healing for a month or so - chance to complete my sabbatical report, read some great books, continue writing my grandmother's biography, and do some drawing/ painting.   I promise to write more soon - at least once per week.  As all of us watch fearfully the continued conflicts around the globe.  xxSal

BACK AT LAST - AND MOVING FORWARD!

Hi all - hope I haven't lost my whole audience!  We've had such a busy summer - went back to work in July after my fabulous sabbatical.  Found I was VERY TIRED commuting to Fall River every day, but happy to be back at work.  New developments:  I'm going into the hospital to have my spleen removed.  The surgery is August 26 - with 6 weeks recovery time.  I'm having the surgery at Mass General, one of the best hospitals in the country.  Hopefully, getting that pesky spleen out (we don't really need it!) also removes the larger remaining tumor (one other in my pelvis, very small).  As my doc says, I've outlived all the predictions, so everything now is an "experiment"!  But I feel fine, and very hopeful about the surgery.

As most of you know, I  celebrated 70 years this year.  We had a huge summer celebration in July, with family and friends.   My sister Susan and brother George both with spouses came to Providence to join the fun.  Also, niece Sarah and five kids plus soon-to-be-hitched man Matt came over as well (they now live in NY near Albany).  With friends and all of Beth's family, it was quite the day! Weather was beautiful, and food amazing as always.  So I'm into my 7th decade - only numbers my friends!

As we continue on this cancer journey, Beth and I are just thankful I've been able to fare so well - with her help and support always of course!  Continuous recurrent cancer is a mixed blessing - great that I am able to maintain a great quality of life, but wish the big C wasn't always lurking.  Nevertheless, I continue to enjoy my life, and feel so fortunate given the circumstances.  While Cancer is NOT a %%&&**## gift, it has reinforced my appreciation for the LIFE I have been given. 

Will try to be more regular and get back into thoughtful blogging.  Thanks for paying attention, loyal readers! xxx

RELAYING FOR LIFE!

Well, loyal readers, if you are still out there, I am still standing - actually walking!  Last night I participated in the American Cancer Society Relay for Life in Pawtucket.  My "Team" pictured above, included Beth of course, Beth's brother Donny, his wife Trish, daughter Madelin, and my niece Sarah who came over from Albany NY with her beautiful brood of four - Thomas, age 13, Jacob, age 10, and twins Isabel and Isaac, age 6.  The Pawtucket Relay was rather sparsely attended, but the enthusiastic group walked around the Pariseau Field next to the PawSox stadium, danced, played games and celebrated LIFE.  We raised over $500 for the cause, thanks to the generosity of family and friends.

I am completing my 6 month sabbatical researching autism in college, a fascinating project.  I look forward to returning to work, actually, although leaving our wonderful yard in the summer is hard!  I am still in chemo weekly, but only 2.5 hours each time - and the tumors are shrinking!  Will try to be more attentive to this blog - thanks for reading!! xxx

SPRINGing!

Greeting to dear loyal readers!  April is here - and I am about to celebrate 70 years of LIVING!  Feeling so thankful that my body responds well to treatment, and I march forward (gaily).  Had a wonderful week in Pittsburgh, visiting brother George and wife Adele in their lovely high rise condo, and attending an adult ed conference, giving my presentation about autism research.  Exciting to visit the Carnegie Mellon museum, the Andy Warhol museum, and the amazing Frank Lloyd Wright house, Falling Waters.  Who knew that Pittsburgh has so much to offer!

Continuing with Taxol chemo, but not at all difficult - just a lovely bald"   Had an amazing "pay it forward" experience on the plane ride from Philadelphia to Pittsburgh.  A woman came to economy from first class and said "you have to take my seat!"  She shared later that her mom had recently died of ovarian cancer.  She rushed off the plane before I had a chance to get her name - am trying to find out from the airline!!  There are sincerely good people in the world.  Sisters in the Big C!

Am continuing to enjoy my sabbatical research on autism - fascinating to explore the strengths and gifts of different brains.  This is "Autism Awareness Month" - light the world blue!

Also had fantastic mini vacation in Vermont with Beth and family members - they had wonderful ski days, I sat in the sun viewing the beautiful snow covered hills (in 50 degree weather!) and enjoying a beautiful vacation cottage complete with Jacuzzi tub!  At home, crocuses are blooming, robins singing, and new life coming in green and hopeful.  Am so fortunate to have time and family - looking for ways to continue my own "Pay It Forward" in new ways.  Til next time...  Sal

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. 
s at

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