Thursday, March 16, 2017

Happy Day - Good News

Test results are in from the Monday PET scan and it looks like the medication is working!  This is the first scan since the one in December that showed that that regiment had ceased to be effective.  Whahoo!   This pill form of therapy has less side effects and allows more freedom for me - this is all good.  I still have tubby toes - no TUBBY FEET - no ankles and need bigger shoes - some tummy issues,  but nothing to seriously hold me back.  I feel like jumping out of plane again - the exhilaration from good news is close to the same

OK - this was a while ago but it's all part of the feeling of celebration.

The mental games that go on with this up and down routine are amazing.  Although we all know we are mortal,  that reality has a lot of different levels of appreciation in our daily lives.  It is easier to live "as if"... or is it easier?  We all do.  Making happy plans for the future - Anticipation as Carly Simon put it.  This adds hours, days, weeks, years... to our pleasure about an upcoming event.  The anticipation is a big part of the fun.  In my situation, the anticipation for happy events in the future can only look a short window ahead to allow me the joy and faith that it will come to fruition - so I anticipate everything with greater vigor!!  The flip side is the joy we get from reminiscing.  Perhaps this ties back to my scrapbook days, but that the looking back has brought me pleasure reliving many things.  As the anticipation window is shortening the reminiscing window is panoramic!  And,  surprise among surprises - the panorama includes some beautiful places, but mostly some beautiful PEOPLE.  I have been blessed to share many important occasions, adventures, moments with some wonderful people.  Many I have lost track of - but they are still with me.  Some of you are here - more and more with each new post.  People are who have formed me, guided me, taught me, led me.....  I have choseN the direction and the people... and I am so glad I have had the opportunities.

Now,  with my Cancer reality and attitude I am endeavoring to balance the importance of reminiscence with the joy of anticipation.  I am on a quest to reminisce with those who shared some great giggles, events, life changes, or just passed happy time,,,, AND look forward to experiencing another new adventure and sharing  - with great anticipation.  

With that in mind,  I have been coordinating a trip to drive around Florida and visit old-timey friends and share the moment.  John and I are leaving tomorrow.  I am also planning a similar trip to Dallas with John to reconnect.  My anticipation is huge and happy.  I hope I don't overlook anyone - time is limited - but we always knew that.  So as they say,  all we have is the present,  but I am using some of that to celebrate the past and rejoice in the future.

Thank you for taking the time.... hugs to each of you.

Friday, March 3, 2017

Seeking Warmth

All is well here and continues on the same course. The new therapy has milder side effects for which I am grateful. I am hopefully building strength - but it's hard to stick to a routine when my husband keeps whisking me away to wonderful spots. not complaining!

 A week or two ago we went to the "cabin" at Raquette Lake - had to take a snow mobile!! It wasn't bitter cold but still winter. The pastel colors were spectacular. We followed that excursion with 5 days at Okemo - skiing with the John's sons, daughter in law, and grand children. I enjoyed watching the DeWeese's all ski together!

 After a couple of weeks at home for Doctor's appointments and a PET scan, we will be heading to Florida for a little less snow and some more sunshine. We plan to visit friends while we are there - as many of our friends migrate there - thought we'd check it out and have a little time with each. Coordinating this is tricky, as plans change to different situations, but I am really looking forward to catching up in person.

 So - we continue on in a healthy style - blessed with many beautiful days and wonderful friends. I hope this finds you well, as well.

Sunday, February 12, 2017

A Fairy Tale

I have been "away" - and when I returned I found this lovely card from dear friends in my mailbox.  The cover read " Sometimes, right in the middle of an ordinary life.." and on the inside it read "... love gives you a fairy tale."  That summed up exactly where I am right now - and especially where I was when I was "away."

"A fairy Tale" is truly an apt description of the life I am living. not the Fairy tale of "folkloric fantasy characters, such as dwarfsdragonselvesfairiesgiantsgnomesgoblinsmermaidstrollsunicorns, orwitches, and usually magic or enchantments.
 the term is also used to describe something blessed with unusual happiness,s, as in "fairy tale ending" (a happy ending).  
, a "fairy tale" or "fairy story" can also mean any far-fetched story or tall tale; it is used especially of any story that not only is not true, but could not possibly be true. Legends are perceived as real.

John and I had just returned from an "unreal"  trip to Kauai with a stop in Coronado to see family on the return.  Need I say, it was phenomenal.  The surf was spectacular, the weather perfect, the :"Garden Island" a wealth of colors and lush greenery.  I had never been to Hawaii so it was exceptionally special - again,  "Make a Wish" material.    I am still pinching myself because it does seem so far-fetched.  But it was true and I can share some pictures.

helicopter ride around and over the island

sunset cruise up the coast

rainbow from the helicopter

zip lining

Many of you say you admire my bravery and my positive attitude through this blog - and I am here to tell you, the blog MAKES me put on a positive attitude and bolsters my courage because I know I have friends who care.

The Irony cannot be lost, though, as I am living this fairy tale under a very dark cloud.  The possibility of this dichotomy of circumstances is such a paradox that it makes my mind spin.  The joy of experiences and sharing with my amazing husband, and the sadness that sneaks up on me in the middle of the night...  It's one version of a fairy tale when a combination of John and me actually did connect - that in itself is a bit of a miracle - add that to my diagnosis and we are doing our best to make this the happiest of endings. 

Saturday, January 21, 2017

A personal Victory

2016 ended with my needing to begin a new protocol of Chemo which I have now been on for three weeks.  This reality had me bummed out as my options of treatment were now one fewer... or so it seemed and seems.  Fears of the side effects were high, as always.  Reading up no the possibilities was not encouraging, but I was reminded by John why that list is so long.   Discussing with the DR (Rathmann) he had a few other thoughts of side effects... lots to worry about but on the other hand the feeling is strong that this, in fact, is a better approach right now.  

In three weeks I have had some side effects like swelling, heart burn, but little nausea.  So all is well and the first two week check in seemed ok but can't tell if it's working yet.   One must believe!

On the positive side,  I had the most endearing birthday gathering of 11 close friends.  A private dining room, and lots of very thoughtful remembrances all around the table.

A week later I get to visit Tyler in Steamboat for a couple of days which was excepptionally nice since he couldn't make it home for Christmas.  Four days of relaxing together and just being together.   One day we walked up to frozen Fish Creek Falls - a nothing walk back in the day,  and it wasn't as bad on my breathing as I had feared.

  The weather was great and, somehow, I gathered the courage and decided to attempt skiing after 18 years and a lot of other obstacles.  I fretted about this a lot, but finally my desire to HAVE skied.  Tyler's patience was being tried...but he went along and helped me each step of the way.  It was kind of payback (or role reversal) for our many trip skiing when they were little.  Breathing, again, was not the problem I had feared although there were moments.  Things have definitely changed.  But...

I DID IT!  Not as strong as I once was and I did take it slowly.  But I did it!  A small victory as I had all but put skiing into the " I remember when....  " memories.

Thanks to each of you who take the time to follow this. It's good to share these minor victories as the bigger challenge continues.  I am doing what I can on that front.  Meanwhile, I am trying to live each day and keep the fears and sadness from ruining what a wonderful life I have right now, today.  I am especially thankful for friendships from over the years.  Thanks for sticking around.

Tuesday, January 10, 2017

Old friends

Book ends.

I turned 70!  
Thanks to each of you who helped me get this far and face the next year with happy anticipation.

Friday, December 23, 2016

Phase II

I hope you are all having a wonderful holiday season and sharing it with loved ones.

David Jr and John are in Suffield for the holidays, Will and KA in Huntsville, and Tyler is staying in Colorado with more immediate issues.

Meanwhile,  as my battle with health continues,  things had been very quiet and working well until... ;the last PET scan a week ago.  Unfortunately,  it seems my cancer has become resistent to the chemo regimen I was on (Carboplatin and Pemetrexed disodium).  Cells are again active and growing.  We knew this would happen at some point.  We had hoped for more time on that phase, but 16 maintenance chemos was all I got!  BUT..  there is another option.  Newer, very effective, and the one that I qualified for with the ROS1 gene.  I got the news of the qualification for this treatment about one year ago.  Less that 1% of lung cancer patients have it so it was a long shot - but halaluja!

So move on we will.  John and visited with the Doctor Thursday and weighed the options on treatment; and have decided to go with the crizotinib targeting the ROS 1, a first generation drug for this purpose.  More are being developed and seeking approval which may offer more options down the line!  This Chemo is given in pill form twice a day.  It has side effects similar and different to what I have been having.  It won't be as cyclical and hopefully not as dramatic.  We will see.

So that's the update on the battle.  I should start this regiment in a week as things progress through the insurance and pharmaceutical world.  A new start in the new year.

I thank you for your continued interest and concern.  I will keep you posted on the next phase as I learn more.

Happy Holidays.

Wednesday, November 2, 2016

Side effects

Friday's visit with the Doctor went very well and we are still on the original course of treatment as it seems to be keeping the Cancer from growing or changing.  How long this will last? who knows - but we will continue with the regiment including the PET scans and see where it takes me.  Meanwhile,  research and success stories of Gene targetted and Immunotherapy accummulate. 

 So far my side effects have been minimal - certainly compared to the alternative - and do not give me cause to think about changing anything.  My feet are swelling more and by the end of the day,  I seem to have lost my ankles.  The nausea in days 3 to 5 after chemo continues as well as exhaustion.  And then there's this:...