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:...

Sunday, October 23, 2016

Six months

And some people thought it wouldn't last!

A quiet weekend at Raquette Lake....Snow and and a roaring fire!

Wednesday, October 12, 2016

Some days I have to push myself

Chemo last Friday and Tuesday today, I am not feeling very well or energetic. I know I do better when I'm busy but it's hard to get moving.  There are things I need to get accomplished.  I got dressed and walked the dog, hoping that would perk me up. I have art class this afternoon which seems like too much energy required. I would like to plant the daffodils since it's a crisp fall day and beautiful.  But really I want to go back to bed.

So I write this blog occasionally to update people on where I am and I get compliments for being so positive. I have a lot to be positive about. I don't want to disappoint you today by giving up the day. So putting this on paper is challenging me more to get up and move.Will I post this even if I don't get up and move? I have that choice.

The rest of the story....

Today I have to thank each of you who have read my blog, offered encouragement and admired my positive attitude.  Because of you I pulled myself away from fatigue, planted daffodils, and went to my art class.  I feel so much better and I'm on the road to recovery from this three-week chemo session.  Although I fear each session is harder to handle,  I keep conquering it and we continue on.  You are each on my team, whether you know it or not.  I thank you for caring.