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!  

Thursday, June 23, 2016

One month later

It's been awhile since I last wrote - but it seems like nanoseconds.   Time is flying by and I count it in many ways.  Every three weeks - chemo - now on number 14 next Friday... Pet scan every 9 weeks - had one Monday... and now married for two months!   Things continue to go phenomenally well.   We have been busy with little time to fret over things that I can't control.  Now I await the reading of the PET scan.

Meanwhile, I will give you brief glimpse at how John and I are keeping busy and having a great time.  Memorial Day weekend we flew to Austin to spend time with David Jr. And share with John some of the "things I like about Texas."   We did Luckenbach, Wimberly, Fredericksberg..... Saw Chris Gage and his wife Christina Albert perform... Caught up with dear friends Sheryl Johnson and LAURIE Shields,   And avoided the flooding!   A whirlwind of a weekend spontaneously planned.

Above we ere at the Steiner Ranch about to enjoy some great steaks!

Other busy-ness included a paint night with Will and KA.

Hatheway house garden party with great food and music!

Thanks to my family, friends and John(redundunt but worth singleing out),  I am kept busy and learning.  I am planning to attend a creative writing course with my High School friend and her husband teaching in Maryland this weekend.  Why, you may ask, is someone who majored in Mathematics with graduate degrees going to a creative writing class- because no matter what else happens I know I will be entertained, gain a different paradigm on a number of things, and leave with some life enhancing nuggets of words from Suzan, and probably Jim.  I am looking forward to it and fearing being so far out of my comfort zone.

AND finally, I have spent the last three days exceptionally concerned about the results of the Monday PET scan - the demarkation of another 9 weeks having passed, another 9 weeks into the regiment with a limitted time affectiveness.  Wondering, and fearing the results...  They came in this morning, Thursday.  First thing I checked  when I awoke -  and  they look GOOD.  Tomorrow I talk with the Doctor, and find out for sure,  but many of you are also curious and I am pretty confident that I will stay the course for another nine weeks!

Although I do not think about the "diagnosis" - that is the Cancer growing in my body (more difficult to say) all the time as I had feared last Fall,  when I do think about it, it truly envelopes my whole thought process with anxiety and stress..   I get testy and can say harsh words to those around me, those who have given me great support.  I wish it were not true.  I ask for some patience and forgiveness.  You know who you are!!

If you have taken the time to read this and are not someone I have talked to in the last 9 weeks - drop me a note and let me know how YOU are doing.  I care about YOU and would love to hear back.

Enjoy- and thanks for being concerned.

Carpe Diem


Monday, May 23, 2016

Mixed messages

First - a report on thee DAFFODILS

 The daffodils were all out in full bloom around the house.... Successful conclusion of my efforts in the Fall.

And a report on the HONEYMOON

A marvelous trip to Southern France barging near Toulouse! Simply marvelous. Four guests and four in staff... A very personal trip. Thank you Dale and Doug Bruce for letting us know about this opportunity! That was the week of April 30th to May 8th.  Aboard the Rosa with Captain/owner cook Dominique backed up by Elissa, Adele, and Pierre.

We were two of four passengers (usually there are 8 but it was early in the season).

These guys took amazing care of us.    Adele, Elissa, Dominique and Pierre.

Every day we had a short tour of something in the morning to return to the barge for lunch on deck...cruising, and then a gourmet dinner!   Wine pairing and amazing food. 

Many locks to pass through and an aqua passage - bridge over another river!   

Canal was lined with Plane trees.  

A little bit of heaven during thin the south of France.

We returned home and I had another week of feeling well before another chemo session.   I feel so great before the treatments.... I start to dread the next is keeping me here!   I'll keep at it.


Last Friday I had a good visit with my doctor.. He, as always, asked me about many possible side affects of this treatment. I answer most of those questions negatively but with the fear for things in my future.   I have to not go there in my mind, but it's hard.We also discussed the plan, continuing as is as long as it works and side affects are minimal.  He told me of another patient that had 30 of these treatments and then times without any chemo.    That sounds really good to me, now.  I have had 7 so far.      Then he mentioned the next treatment procedure and the OTHER side affects there.   This is truly a  ying and yang path I am on.  

I want to know more about the treatments and what to expect - Part of me does.  There are great advances being made here and new studies everywhere.  I believe I am in very good hands in St. Francis and with John.  So I think I will read a little at a time.  It does cause additional worry.  Right now I am very thankful that I am on this one course and can stay with it.  

AS you can tell, John has been and contiues to be a fabulous companion.  He keeps me so busy,  I hardly have time to think!  We had a very busy weekend visiting old friends, collegues and family.  Next weekend seems he has more time off and we had little planned - so we are going to head to Austin to see David Jr and get some Texas music in our blood!  

Having Cancer has made both of us aware of limitations on what lies ahead - the biggest is TIME.  We all know that - not just those that have "a diagnosis".  But when you get "the diagnosos" the essence of time has more meaning and it has made John and I and those close to us really work on "carpe diem" and not just promises of someday.  I wish that for each of you.

and the Most Recent WORD from the LABYRINTH is  "STILL HERE"!!!

It has been weeks since I have been to the labyrinth.  The clutter and crush of too much to do: travel, tutoring and endless errands swallowed days and weeks in a single gulp.  Spring, which seemed to come so slowly,  now rushes at us headlong, propelled by the bluster of the incessant Santa Fe winds that carry the memory of winter. So, it was wonderful to return to the labyrinth this morning.  I have missed this quiet place and missed bringing each of you with me here.

And there it was,  stretched out before me, whispering “I’m still here!

Still here unbruised and unblemished by the wars of winter.  
Still here with paths washed clean by recent rains.  
Still here waiting for the walking. 

And so I walked, reciting each of your names as I always do, over and over, bringing you closer, over miles and time, and other illusions of separation. Still here in the middle of the miracle of an everyday journey in ordinary time.

And as I was leaving the labyrinth, I looked back and noticed the pattern of sunlight and shadow that I could not see while I was walking.
It formed an almost perfect image of yin and yang: light curving into darkness, the balance of opposites, a parting gift from the labyrinth.

And so, I am Still here
Walking the labyrinth
With you
For you
Still here…...