Make new friends but treasure the old.

It's been a busy January with little time to crawl under a rock and feel sorry for myself.   John has kept me busy with some time away from Longmeadow and Suffield!  A birthday get away to Vermont, New York Opera, and a trip to California to visit his sister and her family in Coronado.  A great way to spend the month!  Things are calming down in February and I am enjoying the dailiness of just living!

I have experienced my second Chemo treatment with the reduced Chemo Cocktail.  This time, the reaction was even less than last - kind of amazing and very hopeful.  I also had a meeting with my Doctor who is very pleased with my activity and health level.  He has scheduled another PET scan to check the progress.  Before the next Chemo - I will have that done and learn the results in two and a half weeks.

Meanwhile,  I continue to get amazing support from you guys..  I do so appreciate that. As I am still very functional, it has been great to spend some real one on one time with those of you who come through this area or that I am able to visit with on my travels.  While we were in Coronado,  I was able to catch up with two very dear friends - one from Grammar school and another from more recently.  I really appreciate that they drove all the way to visit.  Below are pictures of me and John with JANET and Mike Frazier, me and Jannie, and me and Charlie Barr and Joey, his pup!  Charlie and John Matthews are both avid Rotarians, they had a lot to talk about!  Great hugs and a little bit of tears - and wonderful connections.  Nothing like "old" friends,

Mary Ellen and John Matthews - John's sister and brother in law introduced me to a NEW friend....  ALEXA...  It so struck my geekie side I had to get to know her better.  So I have adopted her - well - one of her. If you don't know of her - when you watch the superbowl,  I believe you will get to meet her.  I heard they might have a commercial there!  So... just thought I'd share her with you now... Let me know what you think!   It's rising in my gadget favorites to the status of SONOS.  And has nothing to do with being sick!


Next Blog I want to tell you about some of the beatiful  "WORDS" I have recieved..

Have you ever walked a labyrinth?

Settling in to the routine

Holidays have passed and the boys have all returned to Texas and Colorado. Will and KA are settling into my house and I continue to settle in to John's.

 Maintenance chemo has started - and it went well,still a little nausea and discomfort but much more manageable. No news of any medical import - which is wonderful. I hope this continues for quite some time. I feel great and am exercising some, enjoying my painting, connecting with friends and gettimg so much positive encouragement from those around me, I have trouble realizing that this cancer is still in some control.

 January has brought new re-connections and such warmth and love from old and new friends that I have hardly had a moment to be blue, scared, or to hide under a rock, as which my instincts often have leaned toward. I have heard from a few of you your own stories of cancer and survival. Your stories inspire me as I realize how many have walked this path. I have not written much, fortunately, there is not much to say that is new. I am going through the motions I am told to do and the Doctors are doing a great job... so I believe. The Maintenance dose of chemo was much less devastating and I made it through with a bit more energy. I have another one next Friday. Hopefully this will continue for awhile as the treatment continues to hold the cancer at bay.

 In between treatments I feel great. John has kept me so busy that I hardly get a chance to feel sorry for myself - in truth, I feel like I won the lottery much of the time - he is so good to me. As he is still working, my weekdays can be spent catching up with friends, painting, reading... doing my own thing - but the weekends have been so full I am having wonderful experiences in Vermont, New York City, and about to head to San Diego. He is keeping me moving and engaged in the act of living every moment. I don't know if I can keep up this pace, but it is fun to try. I am ever amazed at his energy level.

 In conclusion - I am a very lucky girl for a lot of reasons. I am proceeding as need be. If I don't write as much here, it's because ...
 1, there's not much too add
2. I have been too busy!
3. I am feeling good.
It is NOT because things have taken a turn and I have decided to hide under that rock. So you won't worry, I will try to post something at least every other week. If you have unanswered questions - please feel free to call me. I'd love to hear from you.

John and I in Warren,VT
Our room was decorated from Mad River Glen ski house
It may be the closest I get to skiing,  it was a real treat
for my birthday!

Happy New Year to all

Today I met with my oncologist in Hartford to review and set the course for then next months... maybe year.... maybe more.  After verifying my progress with the current round of chemo - a combination of carboplatin (Paraplatin) and paclitaxel (Taxol).(in case you understand this), Dr Rathmann felt that the five rounds had done the job he had hoped for and more.  It is time to go on the maintenance part of this Chemo program which means I will have only ONE of the drugs every three weeks,  therefore having much less discomfort and more ability to enjoy my days.  This maintenance program can last  - no one knows and there are cases of more than a year.  What will be will be - because it has to be.  BUT,  when the maintenance stops maintaining - then we will go to plan B which involves the ROS 1 gene mentioned previously.  Therefore - a happy new year as I celebrate finishing with the double dose of chemo and hopefully moving on to less symptomatic forms of keeping this cancer at bay.


Before August 31st I would never have imagined that this would make for a "happy new year" - but there you have it - perspectives can change in a flash. There is so much to be thankful for.  It has been a year for the records in my life - maybe even just a half year.  I have had incredible highs and lows.  Even as the good news continues - there is always the reality that the percentage of success with any of these things is a percentage.  I  want to believe I am on the right side of that percentage,  but we can all do the math.  I have many nights I cry myself to sleep.  Days I just don't want to talk to anyone.  Times I want to crawl under a rock and make it all go away.  BUT they are not the majority of my time spent.

The first month I wondered if I would ever have a moment that I didn't think about this awful thing growing inside of me.  This invasion of my body.  But I DO have those moments.   I cannot deny what is going on and how if affects almost everything I do,  but it doesn't stop me in my tracks anymore.  It makes me appreciate each step for it's simplicity and beauty.

I truly appreciate hearing from friends that are taking the time to keep up with the saga.  It has helped me so much with each day.  Some have difficulty knowing what to say,  and I totally understand that. Here's the bottom line,  at least for now,  Don't treat me any differently than you did - don't hide from it or me.  I am stronger than I was and getting stronger daily.  I may have a macabre sense of humor sometimes about it - it's part of my own coping.  It will come up in conversation and then go away.   If I am in a state of mind that I feel vulnerable,  we most probably will not be talking!  In those cases,  please excuse me and give me time and space.  These too are becoming fewer and fewer.

So as we all face the new year with new hopes and dreams,  I too am thinking of the future,  seeing daffodils in the Fall -  sailing the sunfish in the summer at Raquette lake,  connecting with friends across the country when the opportunity arises,  and sending love to each of you who are my strengths both near and far.

Happy 2016.

New Years Eve Lobster Feast

enjoying the feast

anticipating thedropping of the ball in NYC

Family Gatherings - Lot's of Hugs to Give

Christmas is fast approaching - and health matters are still very much the focus.  Between David's admittance to the hospital in June and November 1st,  I was able to complete a Christmas stocking for my wonderful daughter-in-law Katharine Ann!  As you can tell,  there was a lot of sitting around time done during that stretch.  The needlepoint was a good diversion and focus for healing.

It is now hanging on the mantel in Suffield along with the four stockings done for the boys by Cathy Walker Hopkins's mom when they were born!

Since I last wrote, all the boys have come to town and are safely ensconced in Suffield. Will and KA have made great strides in settling in and I am glad it's working well for all of them.  Johnny arrived the 18th which gave me time to enjoy his company alone,  We went to a yoga class and a yoga retreat together - sharing a new part of his life of fitness and serenity.  It is so special to get that one on one time.  Thanks John!!

Also during that week I met with my oncologist who is very pleased with my progress but hadn't been informed of the Dana Farber Qualification.  I will meet with him again December 31st as we will remap the next version of therapy with the additional information.  I will keep you appraised.  Meanwhile, Friday I had my fifth chemo treatment and I'm only now suffering some con sequences.  Saturday John and I went into New York to see the Barber of Seville at the Metropolitan Opera.  Opera?  It was in English and shortened but still by Rossini!  The trip to the city was a great diversion. We did a lot of walking and window shopping as well as dining and operaticcing.

Tyler and Davey arrived Sunday - driving across country with their two big dogs!  The full compliment is here!  Let the games begin.  It is wonderful that they have been able to spend so much time with us here.  Tyler and I went shopping last night - didn't accomplish much but it was great to be together.

I will be spending Christmas eve and Day with the DeWeese family - after all, John has the grandchildren that he is graciously sharing!! They have all been very kind and welcoming to me and I know it will be joyous.

This feels vaguely like the Christmas letter I used to write about all the busy-ness of raising a family - only different!  These pages are a bit more somber, real, genuine, and very heartfelt.  It's a tough road but, again I am trying to share to good parts - but you all know there are tough times and your support and understanding is invaluable.

So, with that - have a very Merry, Happy Holiday.  Give lots of hugs to those with you.  Listen more intently to what they might have to tell you.  Be a bit more open in your own sensitivities.  We all need to work together.  I thank you for being there f

Good times - good news

Ellen ANSEL,  my great friend from Oakland, Ca came to visit.   When she first heard my diagnosis,  she immediately booked a flight to come East.  I was quite surprised and flattered.... But I know she expected to find me less energetic etc.   Ellen and I originally met at Rancho de la Puerto in Tecate Mexico in 1988 or 9.  Since then we would get together at least twice a year - once at Rancho and in the winter to ski at Vail.  We have shared a lot in those years... And much more in the last three days.  I miss her already.

As we started our friendship with exercise... We relived it a bit by spending the day at Kripula - a Yoga training center in the Berkshires.   We walked the labyrinth (having been encouraged by some incredible words gifted to me by Suzan Zeder), went to a "yoga dance" class, ate vegetarian, and had an oily massage or facial.  We then returned to Longmeadow where John had dinner ready for us an Will and KA.  That was a slice of the fun we had... But mostly we couldn't stop talking!!

And the good NEWS....the Doctor I saw at Dana Farber called to tell me that my cancer DOES qualify for the new immunotherapy that is going on in The battle against Cancer.  My genomes have the ROS 1 mutation, which is in less than 1% of patients with lung cancer.   There is a targeting chemo program in pill form which has been very affective.  Right now we will stay the course with the chemo as long as it is working and start the other when we need a new attack procedure.  I don't pretend to understand this new therapy but I am thrilled.  What I will be taking is not on trial basis,  it's been approved by the FDA.

There's the good news!

So now, more preparations for Christmas, the boys and the DeWeese family.  I enter it with a little lighter heart from friendship and news.  Let the good times roll!

Beginning of Christmas

Getting Ready for Christmas

Thanksgiving  has come an gone. Just finished the last of the leftover... turkey sandwiches, turkey tetrazinie, turkey pot pie, turkey salad... maybe that's why we only have it once a year!  Do we over do it that once...  moderation!!

David and Tyler are back in their respective homes.  Will and KA and settled into my home.  changes are moving forward.  John comes out the 13th for two weeks over Christmas and Dave and Ty will be here for one week.  

After the dust settled in my new home,  John set out to decorate - so far just the outside of the Victorian.... But doesn't it look great!  Even with the incredible early darkness - the lights on the house make me smile in  the darkness at 5 pm.  Today we well do a little on the inside - or, at least that's the plan.

Progress on the war on Cancer on a personal level...  I had chemo the Friday after Thanksgiving... seemed to suffer more from nausea and fatigue than before.  I am finally feeling a bit more normal and thankful that I have two more weeks till the next dose.  Unfortunately that puts ""sick the three days before Christmas and the next "sick" at my birthday.  Gotta plan something special to look forward to.

Mentally,  I am working on more positivity and accepting the things I can't control - and being thankful that I still have many things to enjoy and look forward to.  I have received some great thoughts and "nuggets"   from friends like you.  I have been put in contact with some awesome people that friends like you have offered to share with me.  Next week my amazing friend Ellen from Oakland is coming out and I can't wait to see her and share.  I have lots to look forward to - including my FIRST Christmas with John!

One source of encouragement is from a High School friend (oh... SO much MORE)  who has a number of friends going through what I am dealing with... and she is offering each of us incredible support.  Every day she walks a labyrinth at her home in the mountains and every day she sends an new WORD for the day.  Inspirational and worth pondering .  Each day I take that word and try to work in into my every action.  Suzie is a writer - always had a way with words.  My heart is so with her and I am so blessed to call her friend - and amazed she does the same.  We go WAY back.

So send your words... it's hard to know what to say...  just to know you think of me is encouraging.  A story or a remembrance puts a smile on my face.  Anything you say will be right - accept me where I am - I can't change it but I am still here.

This weekend we are going on a Christmas house tour in Suffield and a party for the Connecticut historical Society.  John and I did this last year... I enjoyed it!  He endures for my sake.  It's important for me to get out and among people and not hide... for all of us.   Sometimes I need to push myself - but I can do it.  We are taking Will and KA as well - I am so glad they are so near and I can share my Suffield with them.

Have a great weekend - It's so good feeling good again ( thank you Robert Earl Keen)

Happy Thanksgiving - I am Thankful

It's a happy thanksgiving for me re the cancer. The PET scan was very encouraging as the cancer seems to have regressed in some areas. The Chemo is doing what it is supposed to do and doing it very well. I met with a member of the team today and she was most encouraging!!! Good news like that goes a long way to keeping MY spirits up.

To celebrate, I have planted about 300 daffodils in the yard - around the house and under the new baby Elm tree on the front lawn. OK - it may be a little late in the season, but we haven't had a frost or the ground freeze - it's balmy today - and this is the time I have wanted to plant them! We will see! If they do come up the will look terrific around the yellow (and other) colored house I now call home.

 We are having a a great crowd for Turkey tomorrow - 20! Yours, Mine, and the neighbors!!! It should be fun and lots of hands are pitching in. I need to do the tables and seating. I have gathered things from the Anderson's table to blend in with the DeWeese family. This is the meaning of blending on a new level!! 

 People start arriving today with John's son, daughter-in-law and the two grand kids! Davey and Tyler are already in town but staying with Will and KA. Last Thanksgiving the feast was fabulous and family fun - I feel much closer to the DeWeese's and know this one will bring it's own joys and stories.

I wish you a Happy  Thanksgiving shared with friends, family, a turkey or two, and lots of hugs.