Winner... and we danced.

"This disease has taken things from me, but it can’t take away the spirit that God put inside of me, the core of who I am as long as I choose to nurture that side of myself."  Sara Frankl

I return to Sara's words over and over again.  What I love the most about having these words in a book?  Its right at my fingertips- and I love "holding" her words.  I've carried them in my heart for so long, and now they've sprung to new life through the pages of her book.  The winner of my Choose Joy book giveaway is...

 #29 

 INKLING!!  

Please email me with your full name and mailing address at vwestra14 (at) gmail (dot) com! I will place the order and get it mailed off to you as soon as I can!! 

*************************************************

 Our schedule has been packed with all kinds of events surrounding hockey- from providing a team meal, to making food for the hospitality suite, to traveling with the boys.  We just seem to always be somewhere between Roger Maris (cancer treatment center) and a hockey arena.

Last week I met with Dr. Panwalkar for the results of my PET scan and brain MRI.

While I had already been given a copy of the MRI test results through my online medical chart system, I always want to be sure that my interpretation is in line with Dr. Panwalkar's.  So he pulled the scan up and reiterated that he also thought there were no changes in the two spots in my brain- no growth, and no new spots appearing either.  Whew.

So then we turned to the PET scan.  He loaded the previous scan from 3 months ago, side by side with the one from a couple of weeks ago.  Then started making sure we were looking at the same "slice" on either side.  

He clicked his way through, what was essentially a black and white scan.  Some of the white areas are scar tissue that has formed from old radiation treatment, and surgical scars.  So as we paired the words of the report from the radiologist, to what we saw in the scans, over and over again we read the words, "no activity."  Meaning that no yellow was showing up which indicates active cancer.

So Dr. Panwalkar smiled and said, "it looks good."  

He then examined me and asked how the side effects were going.  

But I was still processing the scan results.  

"So would you call my scan results, stable?"  I ask him.  "How do I describe this to others?" 

He leans back in his chair, then turns and faces me.  He is slowly shaking his head side to side, smiling, and says "its rare when we are dealing with stage iv, but essentially you are have no evidence of disease,  (NED) or we could say you are in remission. " 

Instantly I'm flashing back, when Dr. P  mentions good ole Mr. NED, the dance partner I've longed to call my partner... from a post long ago...

"Really… he is just a big tease.  That Mr. NED that just subtly hints that he might be tapping me on the shoulder.  I've longed to dance with him, its true.  To have him fully envelope me in his safe and secure arms, if only for the briefest of spins around the dance-room floor.  

Mr. NED, or officially, "No Evidence of Disease" is what so many of us Stage 4 Breast Cancer Survivors hope to achieve one day. Remission is rare- so rare- and when the evidence of cancer is gone, its called "no evidence of disease," because its often a brief interlude.  A few weeks may pass, a few months it seems, and then cancer asserts itself again.  This is the nature of Stage 4 disease. " 

As I snap back to the present, I ask about my tumor markers.  "Well they're rising.  So we know you have cancer cells circulating, and we'll keep a close watch like usual."

"And treatment?" I ask.  

"Yes, we'll continue on with the same treatment for awhile."

And this is when Superman swoops in to rescue me.  He tells Dr. Panwalkar about the rash I have all over my arm.  And the diarrhea that plagues me. "Not much quality to her life when she is tied to the bathroom, and then the bedroom for long stretches from feeling so weak and depleted."

So Dr. P suggests reducing the dose of two of the drugs.  

I nod in agreement.  Still trying to absorb all the news.

We've concluded our appointment and I say to Dr. P, "It'll be 5 years in the middle of March..."  Again he smiles, and says in the most confident manner, "then we'll start on getting the next 5 after that..."  

What I'm really choosing?  Is to believe, that prayers have been answered.  Amen. 

Choose Joy and a giveaway!

It might be my favorite gift of the holiday season.  Sara's book is being released January 5th-today!  I was lucky enough to be a part of the "launch team." Since we had a  PDF file of the book sent to us, imagine my utter delight in opening a package with Sara's and Mary's book inside!  

Sara blogged at Gitzen Girl starting 2008.  We were blogging buds from the start- and soul sisters shortly thereafter.  As my friend Robin, at All Things Heart and Home, so succinctly says in her post...

"Sara, a beautiful vibrant young woman, developed a rare autoimmune disease in her twenty’s and suffered with ever increasing and debilitating pain for nearly 20 years...  But something else was increasing throughout those years…Sara’s trust in God which resulted in Sara exuding this fantastically beautiful spirit of joy."  So well said, Robin!  If you want another beautiful perspective and a chance to win a copy of the book you should visit Robin today! 

It was months after my stage iv breast cancer diagnosis that our sweet Gitz went to her heavenly home, in 2011.  But first she took the time to breathe as much life into me, through her faith and joy filled words, on a "virtual couch," on facebook, she made for Robin and I too "sit" and talk with each other.

I brought the book to chemo and dove right in.  But it wasn't until this weekend that I truly squirreled myself away in quiet and found myself dog-earring pages.  Then underlining in pink.  Then writing notes in the margins.  Soaking it in, cherishing her words, embracing her keen insight and shedding fresh tears for how close her words make her feel to me.  That urge is ever present to fling out a text,  pound out an email, or pick up the phone and call.  Yet a part of me knows, shes here, close by, with the flush of her wings stirring the air every now and again.

As I sat thinking about her life, her lessons, and how she mentored me to live with a terminal diagnosis, long before I knew I would need it, I had also been looking for my new word for the year 2016.  

As I sat re-reading the passages I had underlined, I saw a theme keep showing up.  Two words.  And choose was always a part of them.  And while joy was often the second one, many other words were used as well.  Trust, hope, faith, gratitude, purpose, God, etc.

Then on page 27 she talks about the last time she went outside.  She'd gone to visit her doctor for what would be the last time.  And knowing her body would react in a harsh way to the air and allergens outside, she came back to the condo and relished a few minutes with her mom and dad on the patio.  

"A lot of things aren't going right because I left the house on Thursday.  But I choose the joy.  I choose the conversation, the relationships, the breeze and the sunshine.  And I especially choose the French fries."

That's our Sara!  And that's why I am choosing the word "choose," in honor of her.  I pray that "joy" is my go to word.  As she so wisely says "I choose the joy. When something is going badly and I'm dwelling on it, I think instead of something for which I am grateful for.  I swear to you, it's as simple as that.  You just have to decide today, and again tomorrow.  And before you know it, you'll have an attitude of joy more than any other attitude you have at your disposal."

Choose Joy

I hope all of you will get a chance to choose Sara's book= Choose Joy.  You may even find a few words in it from a friend of Sara's named, *cough* Vicky!  I knew of one of the parts, but to turn the page and suddenly see my name and one of the many, many questions I posed to her... humbled and honored to say the least.

So just in case you can't get your copy just now- In honor of our sweet Sara, I'd like to give one copy away!  

Please leave a comment below and I'll pick a winner at 5 pm on Thursday night through random.org with winner announced at a later date!  

I'm off to see Dr. Panwalkar today with results from my PET scan.  Then off to chemo infusion for the afternoon, hopefully wrapping up in time for Nolan's hockey games tonight.  

Its a blessed day- I pray you all decide to "choose," to live it to its fullest today! 

Christmas 2015

Christmas wasn't found under our tree this year.  It quite literally walked through our front door, time and time again.  Plates of homemade cookies and treats.  Casserole dishes, crockpot meals, yummy prepared dishes of all kinds, brought to us by friends and family.  At a time when everyone is so busy preparing for the holidays- our family was uplifted, and surrounded by hope and encouragement each and every day.  

Our mailbox was overflowing with envelopes and cards and gifts that left us speechless.

And the anonymous gifts- the hockey player light- so cool- no names attached from the sender- but deeply felt surprise by us, and gratitude for the thoughtfulness and pure cool factor! 

The gift card to Target, from the Orchestra, at Horizon Middle School- we're so deeply humbled they took up a collection and picked our family as a recipient!  

And so many other things, big and small, that touched us so.

I have yet to have a full day where tears haven't fallen in sheer humility and gratitude.

"We are sick and tired of being sick and tired.. Definition of courage: Tell your story with all your heart."

My last full day in New York City, I was honored to be asked to share my story on camera.  The room was filled with producers, photographers, and hair and make-up artists- although Stella has her own thing going that doesn't adhere to change very well.

I was asked all kinds of questions about what it was like living with metastatic breast cancer?  What was the message I wanted to share?

I'm not sure the exact words I used, but I shared with them my thoughts as we had descended upon the streets of New York.

It would have been quite easy to step into the flow of walkers, and be moved along en masse with them.  But we were walking by so many points of interest.  I had to remind myself to slow down, and look around, and just be in THIS moment, instead of rushing off to the next.  One of my most favorite photos happened of the bright yellow and red umbrellas and the shiny rain soaked sidewalks, because we took the time to savor the moment right where we were. 

We can all expand the time we have- live more, feel more, be more in the tiniest moments of the day.  And feel grateful for them- instead of trying to extend our time and cross off one more thing on our to do list.  Sometimes the most important things aren't even on our list! 

I told them my wish was to "live my legacy, and not just leave one."  

At some point the room became very quiet.  The female producer had stopped asking questions, and a male had stepped in.  And when I looked up, I realized its because she was crying.   And he simply let me keep going.

I sort of lost my train of thought, and then we all laughed.  We'd been shooting for a long time, and they felt they had more than enough to use for their foundation.

I got up to go, and the female producer came over to me and asked to hug me.  

We ended the conference at 5 pm, and filled our night with a bus tour of New York, and a stop for dinner at the Empire State Building which we toured afterwards.

It was a beautiful end to a wonderful 3 full days of adventure in New York City.

*********************************

We're off for a few days of hockey.  Jim is staying with Crosby who has had a rough go lately, but seems to be stabilized  again.

MRI and PET scan results should be back soon and I see Dr. Panwalkar next week.

"All shall be well" 

When one belongs... New York

“One belongs to New York instantly, one belongs to it as much in five minutes as in five years.” ― Tom Wolfe

Day 2

Our shuttle bus to the breast cancer conference wasn't coming until 12:30 pm the next day.  So that was pure bonus for us to be able to get up early and head out.  We wanted to visit the 9/11 Memorial, and with Grand Central Station just a few blocks from our hotel, we set out on a walk to find it.  

We knew it was morning "rush hour," and we were sucked right into the midst of the crazy masses of people, making their way through the city.  We stopped a time or two for a quick photo, but needed to keep going so we could get where we wanted to go.

And thank goodness, for Chery and Jenna being able to figure out the systems.  I have such an inability to process very much with the high amounts of stimulation going on around me.  So they were my most excellent navigation partners, and managed to guide me through the chaos really well. 

My first experience of the New York Subway System, was when I was 17 and traveling with our Youth Group.  I recall how it was filled with homeless people, begging for money.  I remember the strong smell of urine and body stench, filling the air of the underground tunnels.  I felt unsafe, and scared to get too close to anything.

What a difference this time!  The Subways were much cleaner, with no discernible stench, and no homeless begging in the tunnels either.  I didn't feel uneasy in any way.  

In fact, we got a kick out of the humor in the signs along the inner walls of the train. 

We had asked several people where we should get off the train- and they were spot on.  It was just a couple of blocks from where we exited the train. 

It was raining steadily, still.  Misty and grey outside.   As we walked around the reflection pools, there was a solemness in the air around us.  We didn't have enough hours, to fully go through the museum, but we took our time walking the grounds, around the pools, still trying to fathom what had happened.  

We could see we were near a body of water, just a few blocks away, and so we decided to keep walking down to the edge, to see where we were at.  

Just off to the left of this picture, was a very faint outline of the Statue of Liberty, and we saw ferry boats cruising by us going to and from that direction.  But it was too foggy, to see very much.

Despite the steady rain, I was entranced with the trees still having leaves of multi colors, in so many places. 

With our need to get back to the hotel for the shuttle, we started our walk back, stumbling across a pizza place that made for a quick and tasty lunch.  We made it back to our hotel, in time to get on our shuttle bus and drive the 20 minutes to the conference site.

We drove up to the site, and were taken up to the registration area.  It was a beautiful, modern building, with contemporary decor, sitting on the water's edge.

We started off with some informal gatherings as people registered, and we found a table filled with healthy snack options, that was replenished continuously. 

These were chairs hung near the windows overlooking the river.  

The sights outside were spectacular.  (Photos with sunshine taken the last day.)

It wasn't long and we were seated at tables as the presenters began the breast cancer conference. It was truly humbling to me, to be surrounded by people who saw the need for programs for those of us with stage iv, metastatic breast cancer.  It was through the Pfizer Avon Foundation, that all of our programs had garnered funds to put our programs in place.  It was truly inspiring to see Oncologists, and Psychologists, and Patient Navigators, who truly understood the needs of those of us living with stage iv breast cancer.  The afternoon flew by.  

That evening, we had been invited to a reception followed by a formal dinner, to wrap up our first night.  It wasn't until we ventured downstairs, and were shown the door to go into the lower part of the building that I saw this jaw-dropping sign.  Would any of you happen to be a fan of the tv show on Food Network called "Top Chef?"  I would!!  Were we really going to be eating at a Tom Colicchio restaurant?  

We were!!

We not only ate dinner there, we had lunch there the next day and with better lighting I managed a few photos.

I loved hearing all of the words being used that sound so fancy in the show- and now I can say- taste so yummy!  We had a gastrique of one kind or another, and amuse bouches were served before we sat down.  We got the cute tasting spoons, with one little bite of really good flavors and different spice combinations that made for an interesting dinner experience.  I was so excited to return home and discover that the newest Top Chef show,  has just started! 

So with our bellies full, we were excited to walk over to Rockefeller Plaza and find the tree that we had heard was already lit. 

I knew I was running on empty.  My legs feeling heavy and achy.  But I didn't want to miss out, either.

So we walked.  

And walked.

Getting nearer and nearer.

Until suddenly there were barricades everywhere.  And we were stuck on the wrong side of them.  It seemed as though there were thousands of people packed along the streets, not able to move anywhere.  

It seemed, everywhere we went, people were helpful in telling us what to expect.  There were a multitude of police officers, and firefighters everywhere.  One in particular was very helpful to us.  After waiting for a long time for people to move, and nothing happening, he gave us an idea.

"Walk down the block, and ask if you can go across the street to the TGI-Fridays on the other side of the block.  That should get you across, then through."

So we took off, walking down, and approaching a young officer.  But she was firm in her response, "no." The barricades wouldn't be moving for at least another hour and we'd just have to wait.

So we ventured back towards the group of officers.  And Chery in her insightful and professional ways, spoke very softly in the officer's ear, glancing at me, and then telling him why seeing the tree this night was so important to us.

He had surmised this might be the case, nodding at the breast cancer conference bags over our shoulders.

I was too tired to shed tears, although I could have easily done so- his response was instantaneous.  In short order, the barricades parted, and we were ushered through.  But he didn't just leave us to fend for ourselves, he escorted us down the block and 1/2, clearing the way,  to the area where we could view the tree.  When other officers would call out "hey, you can't go there!"  He would affirm that we could, that we were with him and it was ok.  And we'd be allowed to keep going.  

All I had were images flooding my head, of 9/11, and how New York police officers and fire fighters had led the way for so many.  And now they were leading me, for a tiny reason, yet it was a moment filled with enormous humanity.

I felt so humbled, and honored.  

We tried to get closer, to see the skating rink, and the rest of the decorations.  But a private party was being held, and we were turned away.  Still, we had gotten really close and couldn't have asked for a better experience.  

I'm clinging to the reminder that the tiniest acts of kindness to someone, can leave the biggest impact, without us even fully knowing. 

We tried to hail a taxi for the ride home.  But they were all full.  Eventually we realized we could walk the rest of the way.  I just remember walking around the corner, and suddenly there was the hotel.

As I stumbled into the elevator to go up to my room, I squealed when I saw my fitbit reading for that day.  We had surpassed the 9,999 from the day before. We had walked 14,654 steps that day- or the equivalent of 5.55 miles!  

I hardly remember finding my way into bed, and going to sleep.  I just prayed for rest to find me, as the next day would prove to be a very big day as well.  

****************************************************

I had infusion on Tuesday and it went fine.  I do seem to struggle more with bouncing back as quick as I'd like.  But just when we face these hard things, it always seems we're rescued in some way.

Our hockey community, has shown up, and started a meal train for us again.  It's so helpful!  And yummy.  We've had sugar cookies show up, and banana bread, and pasta, and tacos, and a beautiful floral arrangement.  And rides given to Nolan by his teammates. My thank you's are slow to come, but our gratitude is instant and mounts daily.   

~All shall be well~

New York

“I look out the window and I see the lights and the skyline and the people on the street rushing around looking for action, love, and the world's greatest chocolate chip cookie, and my heart does a little dance.” 

― Nora Ephron, Heartburn

This was the view out my hotel room window.  We were on the east side of Midtown Manhattan in New York City.  

 We had a good chuckle when checking into the Tuscany, where we were staying.   We weren't presenting, at the conference, and so the woman checking us in said she saw that it seemed our group all had the standard corner rooms on different floors.  But when she went to check me in she said, "Ohhh, but apparently Vicky is a VIP, and she actually gets a suite!"

So we ran right up to my room, laughing at the thought of ME being a VIP.  So the suite was really cool!  I had a fun sitting area with a sectional couch, a big tv and a corner table and chairs.  There were two huge walk in closets, one set up with an ironing board, iron, and tons of hangers.  The bathroom had a brand new tiled shower with several heads that were so therapeutic, I didn't want to get out.  I would venture to say, those of us with Metastatic Breast Cancer, were the VIP's given the fancy rooms.  I would have to say the Pfizer and Avon Foundation, was very generous and accommodating to our needs.

We met each morning down here in the lobby for coffee.  The modern decor was seen throughout the hotel.

And yet, just next door, was a classic brownstone where someone resided.  I loved the hotel being tucked into a neighborhood like this one.

So with the whole late afternoon stretching out before us that first day,  we were off after throwing our bags in our rooms.  It was drizzling outside, and yet the temps in the mid 40's felt warm.  I was so enamored with every little thing, I could have stopped and shot photo after photo, despite the fact we were on our way to find something to eat. 

But first we spent some time in Time Square, trying to take it all in.

And the something to eat?  Did not disappoint!   How about hand made gnocchi?  So yummy.  

To finish off the meal we shared a vanilla bean panna cotta for dessert.  

And then we were off again.  Headed out to find our next big adventure.

And suddenly around the corner, there it was!  The Gershwin theater, where we would see Wicked, that night! 

Jenna did such a great job getting our seats!

We couldn't take many photos, just a few before the musical started.  But when it did, I was completely entranced!  I could easily go see it, again, and again.  

But in true New York style?  Who would have guessed, the biggest adventure was still awaiting us just around the corner?

As we exited the building,  numerous taxi's were waiting, as well as a bunch of  bicycle pedi-cabs.  It was the young driver of one of these that won us over.  He felt he could get us back to the hotel in 10 minutes!  So why not?  We climbed in, and quickly figured out we'd better hang on!!  We had no earthly idea of the path he would forge- right through the middle of traffic!  He didn't pick a lane- he would zoom all the way to the left across ALL the lanes of traffic, and then as we shifted all of our weight trying to hang on- a car would start to move into our path, and next thing we knew- we were careening sharply back the other way.  His turns were wicked sharp, and left us clinging and lunging and squealing and laughing till our sides hurt!  We'd try to squeeze in our shoulders as we seemed to be in the direct path of taking out a mirror on a parked car, but he'd veer off sharply just when we thought we were toast!  

So TWENTY minutes later, he pulled in front of our hotel and took this photo of us.  I haven't laughed this hard in soooo long.  It was the perfect ending to our night.  And we had SO much more to look forward to.  I collapsed in bed, and happened to see that I had walked 9,999 steps that day- 1 step short of 10,000 (4 miles) which is a small miracle for me.  But then, who could have anticipated how much more would happen the very next day?  

Dr. Panwalkar met with me Tuesday, and brought Ravi, a 3rd year med student with him.  Dr. Panwalkar took his time in responding to my question about what treatment to try next?  He said he'd need to give it some thought, and mentioned one we've done before... but it was evident he needed to mull it over.  So in the meantime, I agreed to give the weekly taxol another try to see if I could tolerate it any better- and I'm still doing the Perjeta and Herceptin, along with it.  I have scans in a couple of weeks and will see Dr. Panwalkar right after Christmas.

So Dr. P walked us out of the exam room and then grabbed my arm before I turned, "I won't see you before, so Merry Christmas," he said.  It caught me off guard, and without saying a word I reached up just as he leaned over and hugged me, as I whispered, Merry Christmas to you, and yours, Dr. P."  And with that, he was gone.  It was the part of the appointment, I hope stays with Ravi, when he is someday seeing patients of his own. 

So I'm feeling pretty yucky, but hope that it will pass in a few days.  We have a big weekend of hockey, and I hope to make it to the boy's games.  

More New York photos soon...

Rockefeller Center and the tree

You can only imagine my sheer delight and pure wonder to see the header of my blog change to this very tree, last week.  The wonder of it all?  I didn't change the header myself. It wasn't my picture.  Nobody knew I was standing by that tree.  When Karen designed the beautiful header, she had no idea it was at the same time I was actually standing in Rockefeller Center next to the tree!  

Jenna, who is to the left, and Chery, who is to the right, in the photo, are the two amazing women who work for Sanford Health, and were my travel companions. I feel so lucky to have been asked to go along on this incredible trip. 

I have oodles of photos to share.  We saw so much- and we learned, we ate, we walked, and laughed and laughed some more, and ate again, and barely slept.  

But today, I'm plunging back into cancer world at Roger Maris.  I'll see Dr. Panwalkar, and then I am anticipating infusion.  I have a full night of hockey as well, as long as I feel well enough to go. 

But I'll be back soon with stories and photos and joy to share in good measure! 

Just wait until you hear about how we got to the tree!