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.

Sunday, September 25, 2016

It's been a year...and I am still here!

Amazing and scary...but I will stick with amazing for this blog.   Amazing to still be very much alive, to have hope, and how fast a year went by!  And that's just for starters!

I have been quiet on the Blogs  -  things continue on the course of chemo phase one.  Pet scan indicates further continuation,, which is good.  Although it's a lowish (what does that mean?   Lower than when I started) dose, the nausea and discomfort days 3 to 7 seems to build.   I said to John this morning. "I wish I would get better". Wanting this to go away...he wisely said "you will be better in two days."  He is right....and I need to endure, and I will.

After the previous round of chemo we were at the cabin with Will, KA, Cathy Hopkins, TJ, and Sheryl Johnson from Houston...each from a different piece of my life.  It was wonderful.  As I mostly see people when I am feeling better, they hadn't witnessed when I am not.  Out in the sun on the boat became difficult for me after a bit and all agreed that they often forget that I am sick.  Truthfully,  I do too....but. Not today.

Another PET SCAN two weeks ago and all still looks good, contained, and we will stick to the course another 9 weeks.  Scheduling accordingly!  Another Opera Season will begin in a couple of weeks,  another murder mystery puzzle weekend,  a weekend get away with my brother and his wife...great things to look forward to - yet another winter season.

I push myself to keep moving... Busy helps...John helps a lot with that too ....but sometimes I just want to shut it all down and have a big "siege of the sad"," a pity party....and I do!  Because I can,

Which reminds me of the wonderful line in Meryl Streepe's new movie.... ". They said I couldn't sing,  but nobody can say I DIDN'T sing!"  So let's sing on...

Will, Sheryl and KA

                                          TJ and Cathy

And here's another thing I learned!!!!WE WORKS is a fascinating company with some really wonderful, compassionate, caring, curious people working for them. They held a "summer Camp" weekend for over 2000 people at the boy's camp which is next to us!  They gave us wristbands!  So we went.  Crazy!   Look it up if you are interested.. they rent office space in big cities to entrepreneurs and others who can't afford real offices!   Or don't want to spend the money.

Right now I am sitting in the Cabin at Raquette Lake listening to the hum of the dishwasher and looking out at a crisp sunny fall day.  John has gone out to get the NY Times for our Sunday entertainment by the fire!  We are here by ourselves and enjoying the tranquility.  I treasure these times as much as the wonderful adventures we have had in the past year.  I can play pushing paomt around on canvas, read, write, listen to music - or just do nothing but breath in and out - so happy that I can.  My mind doesn't totally stop but it does slow down!  Anxieties decrease and to-do lists disappear - for a bit.  There truly is nothing like the Adirondacks!  Unlike the coast - our neighbors are few (only two if they happen to be here)  and no drop ins - It's boat access only!

Fall colors are starting to get brilliant - but the colors are there. 

It's time to plant MORE Daffodils!!  but not today.

Sunday, July 31, 2016

Following the plan

I've been quiet and all continues to proceed according to the plan.  Still on three week intervals of chemo and nine weeks for PET scans.  This is good news for which I am thankful.  

There will be side effects, they say.   Every three weeks I become more aware whether I feel it or not.  They check my blood each visit. and ask me questions.  Each reading and question seems to have a hidden agenda and the possible disclosure of another issue.  I am weary of these visits that they find something else wrong.   For example, when my feet started swelling, I was sent for ultrasound to check for blood clots!   Ok, being cautious.   Still, it gets scary.   Now, from the blood work two weeks ago, they noticed an inconsistency in the bilirubin.  So ANOTHER ultrasound.  This time they found I have Gall stones...ANOTHER Doctor is now needed.... Another appointment next week,,,, as well as chemo. So this three weeks between chemosynthesis I have two other Dr. Appointments.   I fear the slippery slope here.  I shouldn't complain, right!   There will be more... It's the road I am on.  Suck it up.   So I vent a little here.  I get scared.  I am not as cool with this whole thing as you may think!   (from the new Doctor - we will do nothing but keep an eye on them since they are causing no discomfort... yeah)

On the other hand, right now John and I are at the cabin on Raquette Lake by ourselves, enjoying the quiet.  Loving the interruptions of the loons, a fire, music, lunch, and struggling with the New York Times Sunday crossword puzzle.  Acting normal, better than normal!  We have spent quite a bit of time here in the last month, with John's family and without.  It is a wonderful place to retreat.

Last weekend was not so calm or normal. It was amazing.  John and I traveled to Steamboat Springs, Co. To spend time with Tyler.   Make a wish couldn't have done more.  Tyler and I had discussed activities with the reality that I couldn't do the hiking that had been so much apart of me and Steamboat In the summers.

I had made a reservation for a hot air balloon ride for Saturday morning.  Although there was little wind and little travel, we had great views of the valley, the mountain and trails I had hiked near our house and town.  

A beautiful start to our weekend.  

Tyler had another plan scheduled for Sunday, which he had set up for me to see more of the hiking trails I loved.  A helicopter ride!  How unbelievable that was. We took off from the steamboat airport, flew south to Catamont where I played golf, around to Rabbit Ears Pass,  over the back of the ski mountain, then Fish Creek and the falls, out to Hahn's Peak, flying over the devastating blow down in 1990-something,Steamboat lake, follow the Elk River back to the Yampa and back to the airport.   WOW,,THANK YOU TYLER!

So I shouldn't complain, right.    Trying to adjust to this roller coaster of emotions.  Knowing and hearing from friends makes it easier, and I am thankful for each one of you - that we have shared enough that you care and take time.  Join me sometime, if you are near.  I'll meet you half way!