Suzan's labyrinth

Since the beginning of MY journey with this disease, I have had the support of many friends.  All your cards, notes, emails, calls, and even viits have been most encouraging!   

I am singled out one particular support story because I think you will like it.  SUSIE ZEDER is a writer,  by profession but also by an amazing gift.   She was obviously gifted in High School and the gift has been nurtured, grown, shared, and inspired many.   When shel learned I had Cancer, she had 5 other friends as well.   She committed to walking her labyrinth,  invoking our names,  and seeking a WORD of inspiration, strength, or just what we might need to know.   More people have been added, and fortunately theatres have continued.   I will give you a sampling.  

Here is her first word from the labyrinth

Dearest Legion of Ladies!

I did not get to the labyrinth yesterday because we were supposed to go to my sister’s for Turkey day and at the very last minute her oven went kaput  and everything had to be moved here.  So it was a culinary ballet of flying pots and pans and sauces splashing, culminating with my browning the marshmallows on top of the yams with a blow torch because there wasn’t a free spot in the oven. But we all survived, except the turkey who was a nobel bird raised by local turkey farmer dedicated to providing his free ranging turkeys with the highest possible quality of life before T’day. His motto is “All Turkeys die, but not many of them truly live!.”  I like the “truly live part” and I think it a great way to start my words to you from the labyrinth in the spirit of the mantra of “truly living.”

So I went the the labyrinth this morning, a blustery, chilly morning with snow flurries racing about and a wind chill that sliced through the open air like a paper cut! I stood there overlooking the mountains that seemed a chilly blue themselves, even the sky seemed cold. I evoked each of your names and dedicated the walk to you and asked for a word. It came about 3/4 of the way through my trek, on the homeward lap… Perseverance!  Now it may have been the weather, but one simply can’t deny a word from the labyrinth!  

In walking the labyrinth,perseverance is putting one foot in front of the other and trusting that the path will take you out…or in, depending on where you are in your journey.  On the way in it takes you to the center, but the path is never a straight one, it loops and turns back on itself, and just when you think you are getting to the heart of the labyrinth, it swings you outward again, but eventually you get there. The same is true with the path on the way out, you never think it is going to be over and then it is…. so whether you are on your way in or on your way out of the labyrinth, all you really have is just that one step, and then the next, and then the next!

So I am sending each of you love and healing thoughts, whether you are on the way in or on the way out of this part of your journey. Each step holds a different experience, each step is hard  and each step is precious because it lead to the next one and the next… I hope your steps today are peaceful and filled with the abundance of Thanksgiving.  I give thanks every day that each of you are in my life!

Suzan

This next word really got to my as my instinct to run away was strong.    I hope you enjoy it as much as I did... I cry when I read it out loud!!!

Dearest Legion!

It was 19 degrees when I walked this morning, ground frozen with a slight sheen of ice crystals and my breath a cloud of silver. Zack accompanied me, but knew not to enter the labyrinth….no dogs allowed inside, so he hunkered down at the entrance, but did not lie down paw over paw feigning disinterest as he usually does.  I was soon to discover why. He sat bolt upright, alert, ears pricked…

So I started walking as the sun spread a buttery glow over the rocks bringing them to life one by one. A few words flitted through my mind, as quick as the sparrows peppering the bird feeders.   The first word was ”breath", no doubt inspired by the frozen puffs from my nostrils. Another word, “wholeness", which came to jim on his walk, but that was his word for you, not mine. Finally when I got to the very center of the labyrinth, where words usually wait for me to catch up to them, I heard it. A sharp piercing sound followed by a cacophony of yips, yaps and yelps, somewhere between terror and ecstasy, shattering the silence, tearing through the air: A choir of coyotes in full throated pursuit of their breakfast, lots of them, much too close, many too many, seemingly circling us in the arroyo  below us just out of sight!  Their cries were ragged with wildness!

Zack lurched in their direction, about to bolt.  “STAY!” I barked.  I made eye contact and held it. He sat back down, every muscle quivering. The chorus continued, circling and circling. I resisted the impulse to leap out of the labyrinth, grab Zack by the scruff of the neck and escape down the path back to the house.  Instead I stayed put, holding eye contact, saying over and over again… in my calmest voice, “Stay, stay, stay” …and stay he did.  Only the strength of my tone and the leash of my voice held him in the place where he was safe.  Every animal cell in his body called him to race in the direction of the wildness , chasing,  or following, or blindly heading into the trap of the pack.  Slowly I backed out the the labyrinth, following the circuitous route in reverse, keeping eye contact, saying over and over….”Stay, stay, stay, stay!  In a suspended moment of the triumph of domestication over instinct,  he stayed put until I reached him and patted his head.  The spell was broken and we walked quietly together  to the house without looking back, just as Jim was headed out the back door to see if we had lost our minds.  The coyotes continued wailing in vain, their power broken, their cries now hollow.

So, the word for today is Stay.

STAY, when the wildness of fear is everywhere in the air.  Stay, when despair and danger beckons.  Stay, when instinct bids you to fly into the very place that can do you the most damage.  

My wish for each of you today is tostay in that safe place within you, a place so deep that the wildness cannot touch you.

Be well!

Suzan 

Please know all your support sustains me the rough this fight and journey

Jan

Pet Scan

Anxiety was higher than usual for me before this Pet scan.   I don't know why , exactly,  but I think having had a great weekend in Naples with JENNY and Mike Field followed by a Tuesday visit with Dale Cullum from Dallas,  I had much to be thankful for and little time to ponder!  So 24 hours of anxiety was concentrated together.

Good news continues!   The Dr. Called Thursday morning and said the scan was "very, very favorable."  We will continue on the same track for another nine weeks.  I am writing this while waiting for the next treatment!  John is with me.

Here is a picture of me and Jenny... We've come a long way since GA days.

And a selfie with Dale

Labyrinth still coming!

Update of David

As far as me,  

Many of the f you have asked how DAVE is donning, so I asked him to write.  He was happy to, and I hope you enjoy and appreciate his progress since June 20th.  

Hi everyone…Jan invited me to post on her spot a David E. Anderson update in my own words…so here goes an autobiographical effort which will fall far short of those gifted works composed by John Adams and other notables.

I spent a large amount of 2015 as a guest of St. Francis Hospital and its auxiliary institution, St. Francis/MT. Sinai rehabilitation.  Both places are in Hartford. I suspect; however, that my illnesses began a good deal sooner than they were diagnosed.  Since the fall of 2014, I had been really dragging and suffering with back aches; thus in the first half of 2015, I had made several visits to my GP (4), Cardiologist (2), Neurosurgeon (1), and back specialist (1), plus many sessions in physical therapy, all in search of a diagnosis and/or means to jump start this old wreck. 

The bad good news bad news came to me all on July 20.  First an early morning call from my GP stating that the most recent blood scan showed an alarmingly low hemoglobin count and that I was to report to an emergency room immediately.Coincidently, Jan called to check up on me right then.  After I allowed that I had to drive myself to the hospital, she stated that was not going to happen and that she would take me.  Sit tight was the word; she arrived in short order. 

For a variety of reasons, I decided we should go to St. Francis. At the emergency room after no wait and super quick analytical tests, the probable situation was stated to be 3 compressed vertebrae (which I knew about), exacerbated by multiple myeloma (bone cancer), and kidney malfunction brought about most probably, by the bone cancer which was giving all forms of red and white cell production instructions.  After I somewhat cheekily asked the neurologist why he was bothering, the doctor said all was not lost, to hold on tight and that we would see what progress could be made.

With the bolstering of old friends, family, great people at Home Depot, and doctors, progress we have made.  After leaving St. Francis on October 23, quite a stay huh, I have been rehabilitating under the care of my good sister Janet and her husband, Dan.  The sons Anderson have made several visits back east and have been, individually and collectively, sources of great comfort.  In fact, I think this past Christmas spentmainly with David, Tyler, John, Will, and Will’s spouse, KA,was the most peaceful and fulfilling a holiday I have ever had.As a further note about food and company, past Christmas eves I usually contributed something to the meal, my sister Janet always having been the mainstay.  This year she did most everything, hosting a very tasty smorgasbord; the following day we all joined Janet’s in laws, Debbie and Donald Platz, for a super Christmas day meal and gathering at their home.

These days, I am getting around with the assistance of a cane and/or walker.  My reliance on oxygen tanks to produce hemoglobin and energy is greatly reduced and the doctor is weaning me from that support over the next couple of weeks.  I am not driving but hope a decreased reliance on pain medications will allow me to do so in the next few months.  All and all, things are looking up. and strangely enough, when viewed from some of the earlier- in- life perspectives which were held so strongly by me, I have much for which to be thankful.

Should the moment strike you I can be reached at 860-214-5349; deawlpro@gmail.com; 202 Skinner Hill Road Coventry, CT 06238

 

As for me,  I am keeping busy and as preoccupied as I can be to not think about the upcoming PET scan on Wednesday.   John and I are in Naples, Fla. For the weekend with deer friends from way back.... Like High School.   

JENNY Field!

We head home tomorrow but it's great to be away from the cold!   

I know I promised labyrinth stories... But that will come.

Meanwhile,  Happy Valentines Day.

Make new friends but treasure the old.

It's been a busy January with little time to crawl under a rock and feel sorry for myself.   John has kept me busy with some time away from Longmeadow and Suffield!  A birthday get away to Vermont, New York Opera, and a trip to California to visit his sister and her family in Coronado.  A great way to spend the month!  Things are calming down in February and I am enjoying the dailiness of just living!

I have experienced my second Chemo treatment with the reduced Chemo Cocktail.  This time, the reaction was even less than last - kind of amazing and very hopeful.  I also had a meeting with my Doctor who is very pleased with my activity and health level.  He has scheduled another PET scan to check the progress.  Before the next Chemo - I will have that done and learn the results in two and a half weeks.

Meanwhile,  I continue to get amazing support from you guys..  I do so appreciate that. As I am still very functional, it has been great to spend some real one on one time with those of you who come through this area or that I am able to visit with on my travels.  While we were in Coronado,  I was able to catch up with two very dear friends - one from Grammar school and another from more recently.  I really appreciate that they drove all the way to visit.  Below are pictures of me and John with JANET and Mike Frazier, me and Jannie, and me and Charlie Barr and Joey, his pup!  Charlie and John Matthews are both avid Rotarians, they had a lot to talk about!  Great hugs and a little bit of tears - and wonderful connections.  Nothing like "old" friends,

Mary Ellen and John Matthews - John's sister and brother in law introduced me to a NEW friend....  ALEXA...  It so struck my geekie side I had to get to know her better.  So I have adopted her - well - one of her. If you don't know of her - when you watch the superbowl,  I believe you will get to meet her.  I heard they might have a commercial there!  So... just thought I'd share her with you now... Let me know what you think!   It's rising in my gadget favorites to the status of SONOS.  And has nothing to do with being sick!


Next Blog I want to tell you about some of the beatiful  "WORDS" I have recieved..

Have you ever walked a labyrinth?

Settling in to the routine

Holidays have passed and the boys have all returned to Texas and Colorado. Will and KA are settling into my house and I continue to settle in to John's.

 Maintenance chemo has started - and it went well,still a little nausea and discomfort but much more manageable. No news of any medical import - which is wonderful. I hope this continues for quite some time. I feel great and am exercising some, enjoying my painting, connecting with friends and gettimg so much positive encouragement from those around me, I have trouble realizing that this cancer is still in some control.

 January has brought new re-connections and such warmth and love from old and new friends that I have hardly had a moment to be blue, scared, or to hide under a rock, as which my instincts often have leaned toward. I have heard from a few of you your own stories of cancer and survival. Your stories inspire me as I realize how many have walked this path. I have not written much, fortunately, there is not much to say that is new. I am going through the motions I am told to do and the Doctors are doing a great job... so I believe. The Maintenance dose of chemo was much less devastating and I made it through with a bit more energy. I have another one next Friday. Hopefully this will continue for awhile as the treatment continues to hold the cancer at bay.

 In between treatments I feel great. John has kept me so busy that I hardly get a chance to feel sorry for myself - in truth, I feel like I won the lottery much of the time - he is so good to me. As he is still working, my weekdays can be spent catching up with friends, painting, reading... doing my own thing - but the weekends have been so full I am having wonderful experiences in Vermont, New York City, and about to head to San Diego. He is keeping me moving and engaged in the act of living every moment. I don't know if I can keep up this pace, but it is fun to try. I am ever amazed at his energy level.

 In conclusion - I am a very lucky girl for a lot of reasons. I am proceeding as need be. If I don't write as much here, it's because ...
 1, there's not much too add
2. I have been too busy!
3. I am feeling good.
It is NOT because things have taken a turn and I have decided to hide under that rock. So you won't worry, I will try to post something at least every other week. If you have unanswered questions - please feel free to call me. I'd love to hear from you.

John and I in Warren,VT
Our room was decorated from Mad River Glen ski house
It may be the closest I get to skiing,  it was a real treat
for my birthday!

Happy New Year to all

Today I met with my oncologist in Hartford to review and set the course for then next months... maybe year.... maybe more.  After verifying my progress with the current round of chemo - a combination of carboplatin (Paraplatin) and paclitaxel (Taxol).(in case you understand this), Dr Rathmann felt that the five rounds had done the job he had hoped for and more.  It is time to go on the maintenance part of this Chemo program which means I will have only ONE of the drugs every three weeks,  therefore having much less discomfort and more ability to enjoy my days.  This maintenance program can last  - no one knows and there are cases of more than a year.  What will be will be - because it has to be.  BUT,  when the maintenance stops maintaining - then we will go to plan B which involves the ROS 1 gene mentioned previously.  Therefore - a happy new year as I celebrate finishing with the double dose of chemo and hopefully moving on to less symptomatic forms of keeping this cancer at bay.


Before August 31st I would never have imagined that this would make for a "happy new year" - but there you have it - perspectives can change in a flash. There is so much to be thankful for.  It has been a year for the records in my life - maybe even just a half year.  I have had incredible highs and lows.  Even as the good news continues - there is always the reality that the percentage of success with any of these things is a percentage.  I  want to believe I am on the right side of that percentage,  but we can all do the math.  I have many nights I cry myself to sleep.  Days I just don't want to talk to anyone.  Times I want to crawl under a rock and make it all go away.  BUT they are not the majority of my time spent.

The first month I wondered if I would ever have a moment that I didn't think about this awful thing growing inside of me.  This invasion of my body.  But I DO have those moments.   I cannot deny what is going on and how if affects almost everything I do,  but it doesn't stop me in my tracks anymore.  It makes me appreciate each step for it's simplicity and beauty.

I truly appreciate hearing from friends that are taking the time to keep up with the saga.  It has helped me so much with each day.  Some have difficulty knowing what to say,  and I totally understand that. Here's the bottom line,  at least for now,  Don't treat me any differently than you did - don't hide from it or me.  I am stronger than I was and getting stronger daily.  I may have a macabre sense of humor sometimes about it - it's part of my own coping.  It will come up in conversation and then go away.   If I am in a state of mind that I feel vulnerable,  we most probably will not be talking!  In those cases,  please excuse me and give me time and space.  These too are becoming fewer and fewer.

So as we all face the new year with new hopes and dreams,  I too am thinking of the future,  seeing daffodils in the Fall -  sailing the sunfish in the summer at Raquette lake,  connecting with friends across the country when the opportunity arises,  and sending love to each of you who are my strengths both near and far.

Happy 2016.

New Years Eve Lobster Feast

enjoying the feast

anticipating thedropping of the ball in NYC

Family Gatherings - Lot's of Hugs to Give

Christmas is fast approaching - and health matters are still very much the focus.  Between David's admittance to the hospital in June and November 1st,  I was able to complete a Christmas stocking for my wonderful daughter-in-law Katharine Ann!  As you can tell,  there was a lot of sitting around time done during that stretch.  The needlepoint was a good diversion and focus for healing.

It is now hanging on the mantel in Suffield along with the four stockings done for the boys by Cathy Walker Hopkins's mom when they were born!

Since I last wrote, all the boys have come to town and are safely ensconced in Suffield. Will and KA have made great strides in settling in and I am glad it's working well for all of them.  Johnny arrived the 18th which gave me time to enjoy his company alone,  We went to a yoga class and a yoga retreat together - sharing a new part of his life of fitness and serenity.  It is so special to get that one on one time.  Thanks John!!

Also during that week I met with my oncologist who is very pleased with my progress but hadn't been informed of the Dana Farber Qualification.  I will meet with him again December 31st as we will remap the next version of therapy with the additional information.  I will keep you appraised.  Meanwhile, Friday I had my fifth chemo treatment and I'm only now suffering some con sequences.  Saturday John and I went into New York to see the Barber of Seville at the Metropolitan Opera.  Opera?  It was in English and shortened but still by Rossini!  The trip to the city was a great diversion. We did a lot of walking and window shopping as well as dining and operaticcing.

Tyler and Davey arrived Sunday - driving across country with their two big dogs!  The full compliment is here!  Let the games begin.  It is wonderful that they have been able to spend so much time with us here.  Tyler and I went shopping last night - didn't accomplish much but it was great to be together.

I will be spending Christmas eve and Day with the DeWeese family - after all, John has the grandchildren that he is graciously sharing!! They have all been very kind and welcoming to me and I know it will be joyous.

This feels vaguely like the Christmas letter I used to write about all the busy-ness of raising a family - only different!  These pages are a bit more somber, real, genuine, and very heartfelt.  It's a tough road but, again I am trying to share to good parts - but you all know there are tough times and your support and understanding is invaluable.

So, with that - have a very Merry, Happy Holiday.  Give lots of hugs to those with you.  Listen more intently to what they might have to tell you.  Be a bit more open in your own sensitivities.  We all need to work together.  I thank you for being there f