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.

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

Moving right along!!!

As we are beginning summer and abouto celebrate July 4th, I realize I should write about how well I am feeling.  This passed month has been a good one.l. My enery level and strength is not so good, but i have much to be thankful for.  I am also having difficulty with lymphodema and dizziness - BUT - still haveing fun and enjoying life. So lets get on with it.

I am currently at the lake with John and his son Thomas.   We will be joined for theo fourth by Sue, Morgan and her friend and on my side. Johnl, Will, KA and Willam.  I am really looking forward to it..  After that we have planned a trip to Italy - a little Tuscany, Rome and Florence.  Never been - looking forward to that, too

 In June, for summer. Solstice we went North as far as we thought we could drive for 3 nights.  We had never been to Quebec City - so off we went.    Had a magnificent time, great food, hotel, walking tour of the city, and a very unique weekend.  Lik being in Eurpope without the plane flight!  

With Sadness, reality hit when a friend I had gotten close to during this medical journey I am on, passed.  Too much to write in a Blog.  Just wanted to share a little of the reality of it all.

Hope summer finds you well and enjoying everyday.  Thanks so much for caring.

Jan

Another memorial day. # FIVE

Memorial Day - the weekend my parents were married.  Will and KA as well. 

My Mom used to comment that is was called "Declaration Day" when they got married and became "Memorial Day" shortly thereafter.  Will and KA were married Five years ago and are on a Carribean Cruise to celebrate five years!  Anniversaries,  holidays, and traditions are makers of the fourth dimension of time.  A wonderful circle of history.

Sadly, it is also the anniversary of our loss of David, the Father of these crazy guys.  A tough memorial that time can make easier but never heals.  My Dad also died on Memorial day weekend.  "memorial" is more appropriate in My family.

Last weekend John and I spent at the Lake-luckily the black flies hadn't taken up residence yet.  It was gorgeous.

 I went to Austin the week before and had a great time with David Jr.  He is introducing his new barbeque sauce on South Congress Street in Airstream style.  stop by and have some if you are near.

June 3 and one last daffodil still persists.  This one I planted as soon as the ground thawed.  late but it was patient!

Davey and hisAirstream ready for business on South Congress.
Stop on by if you are in the neighborhood.
Pictured with Casey and Caroline.

More Daffodils for third Anniversary

Why was I worried about not having daffodils to celebrate the fulfillment of hope for another Spring.
For our third anniversary John and I took an overnight trip to Newport, RI.  We booked a room at the Castle Inn and dinner reservations and headed out Friday.  On arrival we noticed the town was overflowing with Daffodils!!  They were celebrating their sixth annual Daffodil Days Festival.

And, as long as my energy lever is holing up I am now in Austin, Tx. Having a wonderful visit with Davey and catching up on all the new ventures he is involved with.  H:e has a lot of balls in the air,  one in particular is that there is finally an airstream in the family.  He and his business partner Casey have this barbecue food trailer on Congress St.  His brand is called “Whoa”