Melt Down, Turn Around

      I thought about calling instead of  what might seem impersonal in this blog - but it ISN'T impersonal,  it's a way of getting new out to friends in an efficient manner without wearing don=wn my energy and missing someone.  So here goes.

A brief synopsis of the history of the Journey:

Change is inevitable...  something my spiritual side knows but sometimes has trouble accepting.  Four years ago i was diagnosed. started chemo and the journey of fear and unknowing.  Three years ago a PET scan threw me into a tizzie as we realized .  my Cancer had stopped reacting to the Chemo.  There was another drug on the horizon for my type of Cancer (ROS 1).  Ot turned out to be easier to deal with side effects and was approved as a drug for me. Grateful for the option, we began right away and have gained three more years of life and experience.  See previous blogs - It's been pretty incredible.  Lots to be thankful for and many more years than i had expected.

Unfortunately, all good things come to an end it didn't keep the cancer from metasticizing in the brain.  This was a know hazard but all felt it  was a risk we should take.  For three years it has kept my lung cancer at bay, but a little more than a year ago   it did go to my brain.  Two weeks of radiation stopped it's growth there and left me more than a little impaired!  Balance, stamina, aches and pains... 

As this journey continues, last week another brain MRI showed there has been a growth of another tumor in my brain.  That's where the melt down came in!  (my oncologist in Hartford had just "retired" . (Dr Jorge Rathmann) and I moved to a Dr McCann at BayState in Springfield.   was just adapting to the procedures at BayState and the different departments I needed to see when this happened.  Dr Rathmann had introduced me to a Dr Alice Shaw at Mass General who is doing a clinical trial of a new drug option for Ros 1.  I called her and made an appointment.  Rather than do targeted radiology on the "Lesion"  I have decided under good advice to again change Hospitals and Doctors. and enter this clinical trial.  I will be getting the real medication, it has been approved and successful in many cases which are similar to mine.  I feel very hopeful that   this option is the right choice and am incredibly grateful to have this.  Hopeful that side effect will be minimal and effectiveness maximal.  The results of the trial thus far are very positive.  I am very hopeful.

Friday I start the new drug . It  is  " loraltinib".

My dear friend Meryl gave me a book call "Until I Say Good-Bye" by Susan Spencer-Wendel.  It is a beautiful story about her battle with ALS.  It was a great read for me and left me with cathartic tears.  It also left me  with great appreciation for writers who have worked with words and story telling.  I couldn't have described what I am going through better.

Four Year Mark

August 31st was the fourth year anniversary of "the diagnosis".  I went from hoping for 6 weeks to 6 months to 8 months...  It has been a very un-small miracle I can celebrate this anniversary.  And what a wonderful time I have had.  John and I have traveled to places I never believed I would see.  Had adventures and many wonderful meals.  Each day has been a blessing of unexpected echanges.  Good friends have shared themselves with the two of us.  A grandbaby has joined t he Anderson family and another daughter in law welcomed.  Johnny is establishing himself in Cambridge and Davey is growing an his food business in Austin.

Change - nothing remains the same - is a reality of our lives and so, we are facing another change.  The blood/brain barrier that  the cancer broke through Doctor's sound very optimistic that they can zap this into submission - and if there is another,  zap it to....   Why do I think about "WAC-A-MOLE?  Anyway,  that is the next course of treatment within the next week.  We go into Mass General tomorrow to discuss a clinical trial program and any other options there are.  Curious on what they will recommend and what our decision will be.  I will keep you all informed as best I can.

Getting this word out to you now so  I can hopefully focus on more fun topics in the future.  Meanwhile,  we are still heading to the Lake through October,  John is going to Cyprus in November,  and I have had great visits with old timey friends.

Anne and Richard Adler leave there beautiful Adirondack Camp to share some time at ours

Visit with Meryl French at her new home in Jamestown,  RI
this isn't it but it is excellent.