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.

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.

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.

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:...

Six months

And some people thought it wouldn't last!

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

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.

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.