all I can say is NEW YEAR descriptive undecided...write your own

Where to go with All this roller coaster.  thie truly is a struggle and I coun=ldn't do it without my dear band.  I'm just going to tell the tale.

Christmas has meant a lot to me over the years. I think I can remember almost everyone and that’s a lot.  Some stand out more than others. All in all they have been very joyful holidays.

New Years Eve we were to have dinner with friends - they great cooks and good friends.  Hard for John to relinquish the frying pan.  Around noon i had the largest earache but was medicating and hoping.  Got dizzier and pain got worse - we're talking a 10 here.   Then that  ear decided to become Niagra Falls.  I kid you nooot.  I called John and told him "my water burst".  Like any good husband he came right homw, cancelled our  plans, and we were off to the Hospital.

I have a few friends left from this insane saga that are coming  by.  i havent seen anyone in two weeks...be back'

Happy 2020. I can see clearly now

HAPPY NEW YEAR.  







Christmas decorating at the DeWeese  Anderson home may not have been inspirational but this was the "ellf on the shelf;  A bit of a statement on our corner and easy instalation.  What's the phrase "one and done"?


Christmas, like Thanksgiving we celebrated with Thomas, Sue, Mathew and Morgan DeWeese...a cozy warm time,  More on that in another Blog, maybe.

I can’t remember the last time i was this sick on New years Ever.  Horrendous ear infection thar resulted in a ruptured eardrum.  8 hours in the emergency room and much pain, later, i am happy to say good bye rto 2019.  And maybe this experimental drug i am on.

Meanwhile, reporting in after such a long absence from blogging deserves some comments on why and updates on conditions, and that is what I am attempting to do.  John is busily putting away our Xmas decorations that John and I enjoyed,  including the 6 foot Santa he bought (me) for the front porch.  We made it through the holiday’s unlike any i have ever experienced.  

Medically, so far, all reports of the success of my treatments have been “good”. We have made adjustments on dosage as symptoms and side affects vary every few days.  The unpredictability of where I’ll be each day keeps me from making or completing committments.  The is out of character for me and upsets me so I dropping most the commitments to stop disappointing people.  Curious side effect of that is, the number of communications i get from others has diminished significantly!  I understand that relationship.  But from my Children?  You know who you are!

Many thoughts on Christmas’s past, the importance of family, friends, traditions have mulled through this mind during these holiday months.   The desire to be together - or is it guilt - at the holiday season.  It’s only a day?  

Is it only a day ??  Of course it isn’t.  It is a holy day when people around the world join their hearts and their love to pray, sing, rest, rejoice with hope and thanksgiving, that somehow, someway we are here, right now, today, to make someone else a little happier, spread a little joy and realize that we are not alone, and not matter what, that we are not alone, makes this journey worthwhile.  It only takes a hand to hold, a smile, a twinkle in the eye, one word,

If you missed it at Christmas, i don’t think it’s too  late.

That being said... Let a new year begin.

I

Traditional Turkey

I have spent 6 hours trying to write a Thanksgiving missive... and in the end this is all I’ve got!

Thanksgiving has always been a special, traditional holiday for me. Something I had hoped to instill in the boys as a time to gather together and be thankful for the times we have together as a family.  Each year’s memories added to the next - like a fourth dimension of time.  That tradition has continued as every year, one way or another, at least four of us were together,

This year the tradition will be redefined and I honestly have been having a hard time with that.  The exercise of trying to put my feelings into words has helped me deal with the change. Each of us will proceed making unique mosaics of traditional Turkey with intersecting circles of memories.

Love who you and where you are, be grateful for every word, each minute... share positive energy in any way you can

And Please treat yourself to Tom Hanks as Mr Rogers!

Rumors of my Recent demise...

ok . I have been a little depressed BUT...I AM feeling better and Although I thought I'd offended everyone,  I have come to learn MY GMAIL was down!  After I can't tell you how many hours of back and forth with Google and Apple about passwords... USERIDS... security....  My brain is taxed but I am getting some news from the outside world.  It was out for about two weeks that random stuff was missed.  I apologize for any rudeness or sorry I missed something.  Please resend ...


Winter approaches

Getting ready for the holidays... trying to organize dates and calendars has been affected by the drugs and the brain leisions ' but we are keeping it simple and looking forward to family time. Angie, Cathy and Me heading back from the Cabin Getting ready for the holidays...  trying to organize dates and calendars has been affected by the drugs and the brain leisions.  Wobbly is still with me so we are keeping it simple.  I am also dealing with a little depression.  I guess I am entitled although I hate to admit it.  Going to check with the good Doctors on Thursday and maybe there is a happy pill for me.

Angie, Cathy and Me heading back from the Cabin

Hope I don’t jinx this...but i am actually feeling almost human!  This is about as good as it’s been since the diagnosis. The new drug seems to be working and adjusting the amounts within accepted limits the trial is great, side effects few. Gaining a little weight, but all in all.  I feel I can make some plans for the next couple of weeks without fear of needing to cancel them.

Getting here wasn’t easy, I have been quiet in the process... lots of processing to be done.  Initially it was the pain in my shoulder that I thought would never go away then it grew and went to my back.  I could hardly walk.  Seriously it took me 30 minutes to get moving in the morning WITH some slow walk up and down the stairs befor i tried walking on my own. 

When I went to Mass General for the first round of new meds the pain had been there but got worse on the new drug.  After a day they decreased the dosage to 3/4s which was muh better on my body.  three weeks into.  It  was then reduced it to 1/2, where it has been since.  This decrease was predictable from other patient findings so I am not concerned.  I still have achy joins, back aches to some extent, as walking crooked when i get tired, but getting stronger.

Exerising has taken on a whole new meaning for me.  It is a necessity to do stretching when i first wake up. Without it, I would be on the floor.  But I have a little routine that is working.  I started with physical therapy 3 times a week (Maybe twice), and have recently added water exercises.  They feel really good,  until I realized I can't swim anymore.  I remember what do to but the strength in my legs is GONE for anything resembling a flutter kick.

Summer ended with some great weekends at the lake, and trips to Boston to adjust the meds and get on the new regime.  We ran away for a weekend in Tampa to visit my college roommate and her husband.  Mostly staying close to home trying to rebuild some strength that depleted horribly about the time of drug change.  Don’t know why.  Any ideas?

 One adjustment that has been difficult for me is realizing that my family is full of adults!  Making their own holiday plans and needing to be in different parts of country. for the holidays.  I have very little idea how the season will play out here, but this year i am just going to let it be.  I will let you know after the fact, or perhaps, in the process.  Whatever, may we all be surrounded by those we love and care for.

Sorry for the. Delay but I am back!

And actually feeling pretty darn well.  Since the last writing, I have dealt with a couple of disappointments and set backs - but I am pleased to report that my new meds seem to be yet another miracle!

Last July I had another brain MRI that showed significant growth in one of the leisions. NOT good.  Brief discussion about spot radiation to. Zap it.  That idea was replaced  with the option to porticiopate  in a study with new Medicines.  Without going to much into the details,  i moved to a new Doctor. (Alice Shaw) who is conducting the study at Mass General.  After two months of adjusting medicines. I am almost feeling normal!!

I had increased severe pain in my shoulder, back, lack of strength in my legs, periods of deopression,  questioning if this is worth iit.... and a myriad of questions about the universe.  Right now,  I wanted to get the word out to you that I am still around and functioning better that before.

 John and I took an amazing weekend jaunt to Tampa Florida area to visit my college roommate.  More on that when I am not so busy!!

Stay in touch.

Jan

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.