Thursday, October 29, 2020

Amaros,amaros Amaros

WE also got an education

        about a  AMAROS -

        CARDAMARP

    AMARO MONTENEGRO

    AMARO NONINO and

    SFUMATO


I'll Get back to you with more information or if you know so feel free to Write it space it in the space below





Let's try this again

This system worked well for us a while ago, until I kind of lost my ability to compute!  About a year ago I had trouble with my hearing and working on the computer and lots of other things got crazy. I have hadA number of difficulties but I think I'm getting over it!  I am not sure where we left off but in November I had totally lost my hearing. I woke up and it was gone. that was November 1 I think what a year ago.   That Was when I kind of gave up on Blogging


.  Now almost a year later a lot has happened.

I Feel like my life is going in reverse.  I am revisiting many thoughts places and feelings that I had a while ago.  Here is one of the many stories that are letting me now what a wonderful rich life I have had, Yesterday was my husband's 80th birthday and with Covid and everything else this is was not a time to have a big party and somehow he didn't want to have a parade. His choice of celebrating his birthday was a Relais Chateau in Bedford New York.  He has taaught me to trust that brand,and he found one neither of Had been to before.  So he Made the reservation for tonight at the vet Bedford post inn.  We were off for a midweek weekend which couldn't have been more better had we understood what we were doing.  

As we kept getting closer to our destination I kept recognizing areas that are used hang around as a kid- Young adult. There were many restaurants in this area and still are.  It is a beautiful country drive with great colors, perfect time and I was getting many vibes of familiarity and thinking a lot about my family of origin.  The Bedford post seemed very familiar although it felt backwards. I have had this sensation often recently left is right right is left of it anyway a little bit of confusion but very familiar. Many family stories kept coming back to my mind and it was fun to share them with John. Déjà vu were rampant in my brain.  It reminded me of the restaurants my dad would take me to each time I had a new beau/We had dinner in the barn which was not a barn for me years ago.  At the end of Dinner  our waiter in advertently told us that this was the old Ninos.

I began trying to put the buildings and floorplans together in my history memory book Yes made it especially fun for me and I love sharing it with John.  We're walking around this place and I am getting vibes for familiarity when all of a sudden one of the staff mentioned that" this used to be Ninos."  A Favorite restaurant of many of us in high school with  parents and after for a very special dates.  Memories of friends birthdays and over 10 years the celebration came wafting came back. I shared many stories with John and he listened patiently.

While I had moved to Dallas this restaurant has kind of gone under- Literally Roofs had crashed down and walls had fallen but the stone structures that were built from the 1600s on we're still here. The essence of the old property and charm were still buried there.  I could feel the term in my bones just being there 3 to 400 years later.  It was like meeting a friend that I had lost and missed and didn't know how much. I must say the grounds were immaculate. I am taking care of the house has been rebuilt from falling down ceilings and it has been saved by Richard Gere and brought back to life. I felt a bit Of rebirth during the experience. And a lot of gratitude for the rich life I have had how fortunate I am to relive it in bits now.


Since I have lost my ability to put pictures into the blog Take a look at www.bedfordpostinn.com and you'll see some very lovely pictures. Thanks for taking the time, I miss you, stay in touch while we can.





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Tuesday, August 4, 2020

IT’S BEEN AWHILE! A gift enclosed







I’ m baacckk!  Like a phoenix rising - or the little boy who cried WOLF!   But here I am with few side effects,  Quarentine has been good for me, i feel stronger than ever. I have had some great visits with the grand-babies who are now off to Huntsville.  WILL is away with his group of lawyer associates planning their next business venture.kk. Davey. Is I score himself in Manchester, Ct.  Johns’s is still working in Boston and about to escape  as he has bought a. Car!!   Beware!  I hope to see him soon as I am not. Driving right.the “Boston”  Tyler, Jamie and Poncho secluded in Steamboat.  All is well.


In the past months we, as have   I hope you have been quarantined and it has been good for us... My in particular.  I have gotten stronger walking more regularly, and appreciating. Each day.  I am trying to get over my guilty for not. Blogging. - i wanted to put up that video of Allie - but couldn’t make it work.  DdI have been having “issues” with my mind and logical processes.  Google. Has either fixed the problem or I guess it out!!  So here i am.  Where are your???   November I lost my hearing and that was, I believe about the time i kind  of checked out fro the blog. Gave up trying to communicate

Not much to report in the was of adventures.... we have been exploring a “”virtual” world.  About to do a New York City Adventure tour of the Garment district!!  First one of those!

I am learning a lot about my self through this never ending quanantine - perversely enjoying it.  John and I working well - going into the 7th month.  Right now we are in the Adirondacks-quarantining together.  I am taking a virtual drawing course and loving it - you may never see my “work” but that’s ok - i am quarentineds, and enjoying it.   If you str lucky-enough to have a grandchild...bake a drawing class and practive drawing his/hers eyes... heavies has paper.  A good erasers  - digital pictures of child. Looking at different expressions.  Draw - erase -draw -  keep - more paper, draw again..a repeat process

This also works with a puppy.

If you have read this far,,,, this is a gift for you for when you are ever blue. Cut and paste to your cells phone for a smile.  When you need it!



Wednesday, May 20, 2020

SIDE EFFECTS

  1. First - I want to thank those of you that are still around reading this, This post has been written many ways on many different themes but never completed - until now.  I have given up the goals of inspirational journalism dropping back to timely commentary and informational updates.  Limited to a need to know criteria or need to share. My choice.
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div>  Will, William and Calli - amazing


 My health continues to be a work in progress and it continues to be an issue which is a good thing. Otherwise... MASS General me going ... Phoenix ever rising!  They have me on great drugs that seem to be working. We are still juggling...with side effects.

3.  One surprising side effect i call elder onset of ADHD.  My diagnosis and I'm sticking with it.  I start a project and then find myself lost in a sequence of tasks on the computer or ANYTHING else I am trying to do...then the spinning in circles till i stop and nap, cup of coffee something.

Now I have so much more sympathy for those that suffered in school with this.  If I can find something to preoccupy me for 30 minutes of solid focus,  a TV show,  time with friends, dare I say video game.... just to stop the mind spinning.

Other side effects include changes in vision, hearing, memory - all these requiring an arsenal of electronics that need to be rounded up at the end of the day!

This is not the blog I had planned to write.  this is the apologia.  Know I am still here - missing time with friends - so write me. Thanks for stopping by.


Friday, April 17, 2020

Daffodils.

Pardon my abscence..  I've not been well!  But as my British friend Deanne would say..  Lets get on with it..  ,  I will start on a lighter note - DAFFODILS.  I want you each to know All daffodils have bloomed- I am being presumptuous since I don't have all pictures to share with you.  More importantly,  I have recieved many thank yous and realize how often each flower has brought a little sunshine into each one of our lives. The "gift" was Multifacited.


I hope to get back to writing more but it''s hard right now - I've been depressed (surprised?) and have not felt sociable.  Seriously,  it's not YOU, it's ME!
That felt good to get out.  It's true.  I am Depressed.  Just me,   talk me out of it or I'll just  wait for it to pass.

it will ...

please
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Tuesday, March 31, 2020

self quarantine

Haven’t left the house in two weeks.  john And i haven’t killed each other and I am more thankful for having him in my life every day.  the first week of our quarantine was quiet as we both dug into our own projects....John cleaning out his office from 30 years of gathering, and me organizing my paints thinking of taking it up again.




>
 Then last Saturday we decided to go for a walk.  My walking has deteriorated from the and regressed to a tilted walk in the previous week,  a walk I had. About 6 weeks ago where my head starts leading and I have to stop to let my feet catch up - hard to explain but clearly not normal.  I believe it from my drugs and my doctor’s agree.  I was debating taking a holiday from them when....I tripped on uneven sidewalk pavers, smashed up my face and who knows what to my right leg and knee.  JOHN dragged me off the street and into the house.  MY leg was useless and my face was dripping. Blood.  John had a pretty good case of raking me to the emergency room but i dug in my heals.  He got me to the recliner in the family room and that is essentially where i have remained.

Now i am navigating on the first floor and have increased my range to the entire first floor = 1/2 at a time,   It’’s exhausting,


Beware...in this state of aloneness i have reverted making phone calls in a random fashion.  Connecting with friends on facebook that i haven’t talked to in years when i see they are online. For Christmas i bought. Myself a “Portal” primarily to read books. To WILLIAM. We have read a few and total joy without hugs.it’s very handy with this isolation business,

Next blog i may do a video...til then

STay Well and.  Stay safe

Jan

Sunday, March 15, 2020

Alli Anderson








March 10th Ally Anderson was born.  7 lbs,10 oz around 2:30 AM         WOW!   What a concept - a GIRL in my family.  William is so proud of her and is grasping the big brother role with great grace and enjoyment.  She was well preopared for this new addition.  I am awed by KA's organiztion and preparation of her new home. Big brother shared his excitement and  showed no signs of jealousy.  Just happy anticipation.

 John and I had the honor of staying with William the night Katharine Ann went into labor.  We arrived to squeels from  William - followed by the dinner distraction. KA and Will managed to  exit quietly  to the hospital and John and I were alone with the little prince.  He had had a busy day so was ready for bed at his regulalr hour. - and really ready when  John finished reading about dinosaurs.  He was the perfect big brother - slept well and late. It could not have gone more smoothly.  And what a treat to get those first baby ahugs of the morning as we went off to Day care as I had a Dr. Apt.

I want to get this news out so it's going to come in bits. stay tuned.

Wednesday, March 4, 2020

A new Month

It's March 2020!

Another milestone on this journey.  Had I known I would live this long- I could have started a lanaguage program and completed it..  ohhh the time I have wasted!  Now Im wasting more worrying.  Time to turn the page and get get back to living my life.

I am feeling much better with very little pain Medication.  I still am wobbly when I first stand up and often Appear as if I am drunk. It seems to be getting a little bit better but I think with the ears and everything else it's not going to change much more.  Time for me to cut my losses and go focus on the good things coming my way. First in for most I am very excited about the arrival of Ally around 27 March. I am to be an active participant to help KA  Excitement is in the air.

Last week Tyler came to visit for three quick days, it was great to have him here.  He and i aand  KA and William had some great time together, It was a great  visiti - I don't get to spend much time with  Tyler alone! I missed having Jamie here - but we will catch up on that.  In the meantime I want you to know that she is doing very well on the new cystic Phibrosis drug she is on - true medical break through.  Thanks for all of your support

And then no sooner did Tyler leaave and David Jr and a Penske van arrive.  It's kind of a long story and I dont  know the details,  bet he arrived at His Aunt Janet's!!!  Remembeer in December I was so distraught of having a lonely Chrismas?  what a lonely Christmas?  just give it time and, it seems to  right itself....just be quiet and an let it right itself.

Now it's time to be patient and wait for Baby Ally.   

Thursday, January 23, 2020

GOOD NEWS

First Daffodil spotted at
Trader Joe's
        Good News
December and January were full of trials and tests.  Can I tell you how much I dread another MRI.  Loud, uncomfortable lots of banging..l.. sounds like the machine is going fall apart any minute.  Why is that one so loud??  But then again,  I am still having them.

MRI and CAT SCAN were last week,  Dr. visit today and all reports are good,  numbers are good indicators.  Although the last 6 weeks were supposed to be event free, i am hesitant to believe these. next six will be.either... but that’s what the Mass General has scheduled for me and I am hopeful.  I am going to concentrate on building.  strength and endurance, both of which are on the low scale.

I have a strong motivation for my efforts and that is there should a new Anderson baby girl born the end of March.  As all of you can imagine,  I am beside myself with joy and anticipation.  More information will be released as we proceed!  I ask for patience and understanding as this hearing thing is far from over and will always be a disability in this fast paced world of.communicationsll

I do apologize for my brevity here, and my lack of use of the telephone;  my hearing is stil bad and I fear I am becoming an hermit,  write if you will.







Thursday, January 16, 2020

Seeing is belielving.

No Joke - this not hearing thing is a possible for real.  I was going along with the quiet imagining that it was a vacation from responsibilities.  Positive attitude and all.  The ringing in the ears and the banging are continuing... not so funny any more.  Socializing is painful, trying to separate voices and align them with a person in the group.  I find it easier to sit back and watch the body language.  There's a lot of information there.  Perhaps work on my writing skills.  I know I'll keep busy as long as I am somewhat strong and alert.
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Went to a new  physical training course that was recommended today.  I had to move away from the swimming for awhile because of the ear and hearing.  This one didn't work out too well, but I will try again next week - They sold out of harmonica's before I had a chance to buy one!

Tomorrow and over the weekend I am going to work on my FaceTime persona!  I have not been able to talk on the phone because I can't hear or discern inflection.  I talked with son John tonight for the first time in 2 months !!!  It was getting very frustrating no communication.  Totally different.

There were those of you who tried to call and wish me "happy birthday" who  didn't realized had called.  Either John or I told you I couldn't talk to you.  it wasn't personal, i really couldn't.  I hadn't recycled on those calls to explain.  Only now, with Facetime, can I . read your lips and have the ability to understand some of what you are saying.  It's a great relief to me and I apologize to any that feel  was being rude.

Communication is difficult, and when it's just one sense-less it can be impossible.


Tuesday, January 14, 2020

Is this life without ADHD?

Two weeks without hearing a shout out for me to, ni ine has been irritated that I'm not inchargeNo ones looking to ME to anounce and corral people for the next activity - and I have let myself off of that hook.  With ADHD I felt I was always a first responder no matter how uneccessary or inappropriate.

I have, instead focused on my lists and am making incredible progress.  Mind you, still in my ADHD ways,  interupts are plentiful from just my brain.  Right now i am distrated by the need to get something cold to drink. I could do that and forget where I am here. That can happen anyway and this is a good break...this time I will not get disracted by any noises and might get right back!

What is healing of this addled mind and this stricken body... and the wonders of modern medicine. that have given me this day.  the healing is going along, hope my social engagement goes allright. Although I managing to find Joy in solitude,  I really need friends.

The joys of Neuro-Diversity all within one self.  Thanks John Robison for awakening me to new possibililities.

Monday, January 13, 2020

Welcome a New Year with Lots of Promise

So much emotion is involved with the passing of an annual event and a season supposed to be all love and light,  but when the stars are out of orbit and you are out of tune with those around you (meaning I am out of tune) it is time to exit the game and take a time out.  So that's what I did and it turned out to be a good thing.



I have always had most of my family with me at Christmas and wasn't accepting that they are grown., with their own destinations.  No more Santa Clause.   I finally gave up on being with them, or controling them to be with me, and focused on other significant blessings of my life, namely the DeWeese family.  I retreated with John to the Thomas DeWeese's where children, puppies and  amazing food made it feel right.

Then.... there is always the "then" I went back to trying to patch a patch, right a wrong, make up for passed mistakes, try to make a Christmas.  That didnt work.  Things got worse and started involving more family members.  My famiy was imploding - or exploding.  Bits were angry all over the country.  The more  tried, the weaker I got.  Finally, I had to retreat and was caught up by Dr. John.  I walked at that crooked stance old people get when their back gives over to one side.  Mine has been doing that.  it only gets worse.  I was developing achey knots in my muscles- couldn't reach the ground to pick anything up...the the headache started... Until December 31 My right ear drum ruptured ... it started spewing  liquid (pink),  that didn't stop for 4 days. 

Beethoven  1968
So here's the sunshine in the story..  you have to look for it ...  things in my family started to mend! NOT because they were worried about me - John hadn't told them - It happened later when i couldn't hear anything for weeks,   I still cannot hear - it's getting better but no phone conversation!

I hate to say this, but I have enjoyed this time of "quiet",  It is getting lonely but John is good company.  Don't have to answer the phone, no reason.  Don't need to entertain (although John can handle a whole table in conversation which is good to know!) . No deadlines when people are waiting to talk to me - it's relaxing.

The new year is begining on a quiet note and i like that,  The gearing up for holidays is for many at different times of our lives.  I may say I am very happy with my life today, at the MOMENT,  This silence takes a lot of the ADHD nerves away!

Tuesday, January 7, 2020

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'

Wednesday, January 1, 2020

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





Thursday, November 28, 2019

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!


Wednesday, November 20, 2019

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.



Thursday, November 7, 2019

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

Wednesday, September 18, 2019

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.

Wednesday, September 11, 2019

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.

Wednesday, July 31, 2019

REFLECTIONS IN AND ON A BUSY SUMMER


Eating our way through Italy
We found this devine spot on our wanderings in Tuscany
La Chiusa.    Montefollonico, Tuscany
Dinner at Mirrabella im ROME
Montepulciano
Summer is racing past us. I have't written much because I hate to jinx my good fortune of enjoying this time and feeling pretty well!   It's been busy summer with lake trips, two wonderful weeks (hot) in Italy, California and upcoming to Steamboat for Weddings... Quick trips to Quebec City and Newport RI.  It's been great fun. Mixed in with the inevitable Doctor appointments, physiical therapy, and other daily business. Let me NOT forget my favorite activity is spending time with Will, KA and WILLIAM 
Families together at the Lake
















NOSTALGIA

 Many thoughts and memories float through my mind and carry me into reveries. I seem to be conjuring up old memories I haven't thought of in years - decades!  Holidays, traditions, the circle of a year, they knit it all together in a neat package.  July fourth meant so many thing s over the years. Cornells, Country club fireworks, fireworks with the PHILLIPS on our trips back east during early Dallas days- Gracie petrified of the noises when we were back in Connecticut. So many stories tied to one holiday. So many different people I was with during each of these adventurers - friendships I was sure would continue and memories that would be shared forever. Let me not forget the "All broad Kazoo Band" in Steamboat (marching)!

 Now I am celebrating the fourth with my new family and my old in Raquette lake - carrying on a tradition of both families that happily converge on this spot. Creating new memories and enjoying the moments making the memories. Whose memories they will be, and how they are processed over time, no one can tell.

 I am a bit envious of those who have stayed in the same place for many years., raised  their families together and have grand children together - Have the close ties of celebrations and sadnesses over may years that bind them close.

I do have sadness for all those that have been enjoyed and I am the only one with the memory - or feel that I am. So many wonderful people missing from my life on the continuing circle of time. For some strange feeling, in the midst of these two families I am feeling “lonely”. I am missing the joy and silliness we carried on with in these different environs - thankful for the incredible blessing I have found in my NEW family and my Anderson family.

Girl trips are another thing I miss. It was a luxury that I certainly enjoyed. A respit from family and obligations that i could come back from recharged. One year when we were in Dallas and I was at a spa in Mexico, David asked me why I liked it so, I said because I met talented women from all walks of life that I never knew were possibilities, David then said "Does that mean you are not coming back?" After I got over the shock of the asked that -  I said and meant it.. "I am coming back... BY CHOICE!

OLD FRIENDS

HA - all is not lost,,, this is me and my best friend in Shaker Heights,Jannie Bolton (Frazier) before she moved to California and I to Connecticut!  and the picture above is US three years ago in Coronado, Ca.  We got together at the beginning of the summer in California but I am afraid there is no picture.


 If you are reading this and having similar nostalgic moments that you want to share or I might remember,  drop me a line here or janbabsonanderson@gmail.com.


And then there is WILLIAM

Amaros,amaros Amaros

WE also got an education         about a  AMAROS -          CARDAMARP     AMARO MONTENEGRO     AMARO NONINO and     SFUMATO I'll Get bac...