Friday, October 30, 2015

walking the bridge


Our Aunt Cathie posted this on my fb page and I loved it so.  Many days I feel as though I have solid ground beneath my feet.  But then the wind gusts, and I sway, and the air clouds in fogginess and I can't see whats up ahead of me.  So the only thing I can do is keep moving forward, praying all the hope laid at my feet creates the bridge that sways along with me, leading me to all of my tomorrows. 


We're still trying to put our feet squarely on the ground after our trip.  We loved hearing from so many who celebrated the sheer delight and surprise of the trip, right along with us.  

Imagine my great surprise and complete honor to have this photo texted to me a couple of days after we arrived home.  


"It's Hockey Fights Cancer Night and the Cullen family fights for Vicky Westra!"



I loved watching all kinds of new people showing up to like the  Cullen Children's Foundation FB page!  


Tuesday, it was my turn to dive back into cancer world.  Dr. Panwalkar was away from the hospital for a couple of weeks, and so I had the pleasure of seeing Erin, a PA who works with him.  I have been feeling well, and had an element of dread sitting with me, when I thought about having to do Taxotere again.  But Dr. Panwalkar hadn't fully decided on whether or not I should go back to Taxotere, or start a different drug, called Taxol.

Since Dr. Panwalkar was coming back, on Wednesday, the day of my infusion, Erin left him a note, so he could decide.


In the meantime, I had my port accessed and then blood work drawn.  I went home with the needle left in my port, so that it was ready for infusion the next day.  Its not very comfortable, but neither is trying to have the lab techs poke me 5 different times to access my tiny, rolling, veins.  





So the next day I arrived, wondering what lay in wait for me.

And it turns out, it was freshly written orders from Dr. Panwalkar, for Taxol.  Its eye-opening to me, that sometimes the smallest change, can set off the biggest chain of reactions.  Oh my, I was not prepared for what was to come. 





First I had to sign consent for treatment again.  The language used in the form is filled with words I simply don't want to embrace... and yet, its the only way for me to move forward.  I feel the bridge sway, as I sign my name and date it.  

But then my friend, Karla shows up to sit with me.  And she helps me stay in this moment, and that is always pure gift.  And when she has to go?  My friend Barb comes and rains grace over me through her loving ways.  She's been an angel to our family and having her here with me, steels my resolve.  

Its almost time for me to start my new drug.  And what should appear around the corner of the curtain?  A hand, waving, capturing my attention... and then the white sleeve, and then the big smile- and there is Dr. Panwalkar, exclaiming "And how was the jet?" (referring to our trip he must have heard about.)

He looks so refreshed, and is in a jovial mood.  He sits in the chair next to me, and says he has come to talk about the Taxol with me.  He really likes this drug, the drawback is that you take it weekly.  But if you tolerate it,  its a good drug.  I'm a little spacey from all the Benadryl I've had along with the steroids.  I feel like I'm a jittery mess, with a layer of grogginess on top.  

As Dr. Panwalkar finishes talking, and gets up to go, he leans over and squeezes me, with a big smile telling me how nice it is to see me with all the puffiness gone from my face.  But this won't be the last time I see him, today.  

My nurse has brought me side effect information on Taxol.  Its the one little part about a possible hypersensitivity reaction, that causes the dread to rise within me again.  It happens within the first 10 minutes of the infusion, typically, if its going to happen.  And it involves, hives, rash, swelling, difficulty breathing, etc., all that comes with an allergic reaction.

But my nurse assures me she will watch carefully, and have all the meds ready she needs to administer should anything happen to me.

So, onward we go.  She hooks up the bag, and slowly it starts to drip.  Rick comes back and sits with me, and we sit quietly, while the minutes trot past us steadily.  Soon we're past the 10 minute mark and all is well.

It isn't until we get near the 50 minute mark, that the first tingle comes to my lips.  I find myself smacking them, as they tingle in a numbing sort of way.  Its then that my nurse happens to be coming into the room, and I tell her right away, "my lips just started tingling."

And then everything speeds up, in a slow motion kind of way.  She quickly gathers her meds, and pages for the nurse practitioner to come.  The drip is stopped.  I'm quickly given a dose of Benadryl, as they listen to my breathing.  Nurses come from all directions. "No hoarseness noted in her voice."  I acknowledge that my throat is fine, my tongue tingles on the end, but doesn't feel thick.  But my lips just tingle away.

Moments later, I look to see Dr. Panwalkar hurrying around the corner, stopping short of the large group now gathered around me. Our eyes meet and he mouths to me, "Is this you?" as he points to his pager and then at me.

I nod my head up and down.  The fogginess invades as the Benadryl takes effect.  He then orders more steroids and my nurse quickly draws them and injects them into my line.  

Everyone stands and watches for awhile.

Dr. P wants me to wait until the tingling goes completely away, and then he'll consider having me re-start the last of the dose in the bag.  

Its getting late now, I'm one of the few patients left in the infusion center.  As we sit and wait, most everyone is done with their shift and many leave.  It finally seems that my heart rate is back to normal and my lips no longer tingle.  So we start the drip again.

And somehow, by the sheer grace of God, I finish the last of the Taxol with no more adverse effects.  Its 530 pm and I have been discharged to go home.


I only manage a few hours of sleep, as the steroids have their way with my ability to sleep.  But no matter.  As I crawl out of bed and witness the beauty of a brand new day, while the sturdiness of the ground guides my feet once again, hope washes anew. 


















Wednesday, October 21, 2015

the big surprise


Oh, where do I begin?  A few weeks back, Rick mentioned we'd be taking a trip.  At some point he mentioned it was a "surprise," and all he could share with us was we were headed to Minneapolis for the MEA break from school. (Thursday, Oct, 15th) 



So a few days before we were supposed to pack for our 3.5 hour ride in the car, we started asking more questions.  What were we doing?  Where, exactly, were we going?  

Rick simply said, pack for 4 days, casual attire, and just know you'll have lots to do and you'll have a great time.

If living with cancer has taught me anything?  Its this- sometimes, you just do, whatever is in front of you, with little thought about why.  

So I packed.  We packed.  

Then Thursday morning we hopped in the car.

And then like every. other. trip.  Rick had to make 1 quick stop before we got on the highway.  He had to drop off a picture for a woman who was at work in Fargo.

Sigh... so classic for Rick.  We didn't even blink.

As he pulled into a loading zone, he ran into the building.

And we sat.

Waiting.

To go to the cities.

But...

Rick soon came back to the car and said this "Vicky, the woman working inside is a fan of your blog, and would like to meet you- all of you.  Could you come inside?"

"Of course," I say, as I glance at my watch and think about our need to get on the road.

So we all go inside the beautiful building.

She greets us all with the biggest smile.  Have we been to the Fargo Jet Center before?  

No, we haven't.

We walk around and take it all in. 



She then casually points at the plane sitting outside getting ready for departure.

She turns to Colton, "So if you could fly anywhere, where would you like to go?"

Colton stammers, "Ahhh, Miami?"  

Then he points to me- "mom would go someplace warm."

We all laugh.

Then the woman, smiles and says, 

"So how about Pittsburgh, PA?  Any Penguins fans here?  How would you all like to go to Pittsburgh today, and watch the Penguins play tonight?"

Suddenly, I'm searching her face... my mind is in such shock... is she for real?

"Are you saying, all of us, are going today?' I ask?

And then she points, to the plane, waiting just outside, and says "Yes!  Right now!" 

And I lose it. I just lose it.  Tears burst from my eyes, as I lean over,  and then I see Nolan... who has literally fallen to his knees and is also in tears. "Really?  REALLY?"

"Yes!"  

Rick is misty-eyed, the woman is wiping tears, and suddenly we're all shaking with excitement!  And hugging, and shaking our heads.  Is this real?





And then we sit, and try to wrap our brains around this crazy, awesome, mind-blowing, surprise.  Then Rick snaps a quick picture.

We're offered a tour around the hangars, and it suddenly occurs to me, we're waiting for someone.

A short while later, Jeff, Sherri, and their son, Ben walk through the door.  When Ben's eyes see us, and then the plane behind the windows, the surprise takes over his face too!  Ben is related to Matt Cullen.  Bridget and Matt have planned this whole surprise for all of us! 



Ben thought he was in Fargo to help his parents get supplies... we all just keep shaking our heads in pure awe and wonderment.

Best. Surprise. Ever!








Suddenly, the pilot is greeting each one of us, and it's time to go!  






That is sheer excitement on Nolan's face- and probably Ben's too.



And that is, the "tummy tickle," Colton experiences as we take off.  We haven't flown in a plane since the boys were very little!  



A quick refueling stop in Milwaukee, and some time to explore the plane.





Ben with his mom, Sherri.


We flew at 42.000 feet!  The views were spectacular and I couldn't stop taking pictures.  We all loved that everyone got a "window," seat as well as an "aisle" seat.  It was literally the smoothest flight I've ever experienced.  It was still all so surreal.  But the expressions on our faces are real and very telling.





Just a little over 2 hours later, and we were in Pittsburgh, with taxis waiting to take us to our hotel.  We had just a few hours before the Pittsburgh Penguins would play against the Ottawa Senators.





Our hotel, was right across the street from the ice arena.





Could we be any luckier?  I don't think my smile left my face in over 4 days.  

Going to an NHL game is a pretty special treat.  But when you get to see someone from your home town, play?  And you enjoy the experience with his family and yours?  It doesn't get any better than this.




#7- our Matt Cullen.



#87 Sidney Crosby (Ben and Nolan had been to Shattuck St. Mary's for summer camp, where Sidney had gone to school for a year.) 



#29 Marc-AndrĂ© Fleury.  (Colton has always loved watching him play.)


While the boys and I sat in the seats, Rick got a press pass to shoot photos at ice level, for the Fargo Forum.  (Will post a link when his pictures get published.)


I think it's really great to be a fan of a player, like Matt Cullen.  He has all the talent, skill, and hard work, put together to make him the phenomenal player that he is... but more importantly to me?  I'm a fan of what a great person he is, inside, as well as outside of hockey.  Plus...


he picked her.  Bridget, is the one who dreamt this dream, that was far bigger than I could have ever imagined, for our little family.  And then she pieced it all together- seamlessly- flawlessly.  Every last detail, covered.




And if you think the "story" of our adventure can't get any bigger?  Yep, you'd be wrong.  

On our last night in Pittsburgh, Nolan and Ben hadn't been able to cross paths with Sidney Crosby.  So we were gathering to go to the car with Bridget, when Sidney walked past us.  And Bridget, knew exactly what to tell our boys... Run!  Catch him!  Go!  And they did- down through the halls, around the corners, faster and faster we all went, until, Sidney slowed, and turned around.  

"Are you the boys from Minni?"  And I'm struck by how thick his Canadian accent shines through.  The boys do a good job of carrying on a conversation with him, while clearly being awestruck the whole time.


It was a shining moment that had very little to do with anything we did.  It was just meant to be.  We've all been learning how to live in surrender, to the havoc that having cancer can wreak on your life, but sometimes that surrender means you're open to all the things that come your way- the shining moments of light, that help carry you through the dark.

We couldn't have hung out with a better group of people.  Sherri, and Jeff, with Jeff and Janna. 














All too soon, it was time to head back to Minnesota.  


I'm still not sure any of us have wrapped our heads around all that happened to us. 

The one little gem I garnered, and was able to share with Matt and Bridget was this- when you live with cancer its a 24-7 reality.  We had just talked about this in our group, Fourward.  How do you ever escape centering your life around cancer?  I've lived with it for 4 and 1/2 years, and its a heavy burden to carry.  So the biggest gift they gave to me?  To my family? Was a break from cancer.  Mentally, emotionally, and physically, we all got a reprieve from our life of hard and gritty.   As far down as cancer can take me at times, this hockey trip moved me in glorious and profound ways , in such an uplifting manner.  I lived my moments- a whole string of them- more fully than I have been able to in a long time!  



We're overflowing with gratitude, for what two people did so generously for us.  We could say thank you a million times over, and it wouldn't begin to touch how grateful we continue to be. 










These beautiful flowers are from my Uncle Bill and Aunt Carol,  and my Aunt Marlene, in honor of my mom.  They were on the altar of their church on Sunday, because Mom would have turned 80 today!  

I kept saying to Rick, on our trip, I just want to call mom and tell her!  I have no doubt, she was with us, but I still miss her.  I can only wonder what shenanigans she would have attempted today- with a twinkle in her eye- always.  










Thursday, October 15, 2015

nothing gold can stay







Nature's first green is gold,  Her hardest hue to hold.  Her early leafs a flower;  But only so an hour.  Then leaf subsides to leaf.  So Eden sank to grief,  So dawn goes down to day.  Nothing gold can stay.
Robert Frost
I'm walking through the halls at the high school, as we search for the room numbers on Nolan's schedule. We're attending parent-teacher conferences, and yet, I find myself being thrust into my own past.
We're suddenly heading down the stairwell, and I breathe in deeply, trying to fill my struggling lungs with air. But it's the scent, that lingers in my nose, that takes me right back. The stairwells smell exactly the same. Is it the cleaner they use? Or is it the tired cracks, in the aging concrete, that's trapped the smell of all of those years of trudging soles?
My eyes gaze along the walls, as I recall the names that used to go along with each classroom- "Look, there's Mr. Adair's class. My locker was right there, next to Danny Gnadt. So many girls wanted to share a locker with me that year. Ohhhh, and this was Mrs. Redlin's class, and the lines from the Robert Frost poem start whirling through my head. We read the "Outsiders," that first year in high school, and I remember the lasting impression it left on me- just like Mrs. Redlin. Her husky voice, lips painted in red, and the poodle-like ringlets creased into her hair.
As we turn the corner, it's Rick who asks about the name of the instructor who made us keep the "journal," and "Lord Melting," suddenly leaps into my head. The writing "commandments," the rules, we documented and prayed to never break in his presence again. His way of teaching us rules for writing, that really taught us habits like discipline, to prepare us for life.
I was 14 the first time I walked those floors, and how exactly did I suddenly become 48, with my own freshman son, suddenly gracing those same hallowed halls?
Its late the next day, and with Rick's busy schedule, I find myself driving to the clinic on my own. It's on the way back that I can't ignore the beckoning call of autumn's golden luster any longer. I'd brought my camera with just in case. I get out in an older neighborhood, I used to live near, where the houses have all been removed from the flood prone area.
I'm so drawn to the sun light, and the way it plays along the lower branches of the trees, this time of year. Gasp, pant, breathe. Walk, stumble, move.
Nothing gold, nothing gold.
I snap and snap. Walk and walk. Soaking it all in. This. Just this.





Wednesday, October 7, 2015

embracing life



The third annual embracing life breast cancer retreat was such a great success!  I am both thoroughly uplifted and completely wiped out, all at once.  We started the retreat with a fun night of socializing, playing some competitive "Jeopardy," listening to great music, and hamming it up for the photo booth.  

When reporters from the news channel KVRR came and set up their camera, and asked if they could talk to some of us, we said sure.  It wasn't until the next night, that I actually got to see the story and was very humbled by it.  Stella played a prominent part!  If you'd like to view it, you can go see it here, at KVRR.


The next day we arrived at the hotel conference center to a beautifully decorated retreat area.  



They even provided a "stage," for us to sit while we spoke, which made for a more relaxed day.



One of the themes we centered our retreat around was Kintsugi. One of the survivors gave an inspiring story of how she is in the process of making sense out of what had happened to her.  Below is a small part of what she shared with us.


I was so happy to be asked to be part of the planning meetings for the retreat. Could we somehow do  a group created piece of art using the ideas of Kintsugi?  

We had used rocks, for our theme for the first year, trees, the second year- as we brainstormed someone mentioned a butterfly.

So I went home to do some research and happily stumbled across the dragonfly...

Dragonfly- "a dragonfly is usually all about transformation, change and being present in the moment.

See it as a sign that you need to wake up. That you should cherish your life. Every single moment. 
Life is extremely short and you shouldn't waste it by worrying about things you cannot change or have no control over. Live life fully and enjoy yourself. Adapt to new situation and change and don’t get stuck in the past."

We all took turns selecting broken pieces of glass pieces, tiles, ceramics, and gems, and gluing them into the body of the dragonfly.  The piece will be sent off to add the "gold" and finish the piece.  I am so excited to see how the final project turns out! 





I was also very touched to be given the chance to be part of a presentation done with some of my stage 4 sister survivors.  Our group, fourward, meets the 2nd and 4th Tuesday of the month, at Roger Maris, with Dr. Chery Hysjulien

We spent several sessions of formulating a message, through boards we decorated, to share as one of the inspiring stories of the retreat. 



I'd love to share the whole presentation, if I'm allowed to.  As each member of the group stepped forward, holding our signs, not uttering a word, a powerpoint was projecting a copy of our boards so all could see and read our messages.


I scanned the faces of all those in attendance and saw tears in abundance, and emotion-laden responses, smattered all across the room.  I feel like we were seen, and heard.

These were the two I made~  





In other news...

I continue to wrap my arm, trying to assuage the swelling.  It's slowly getting better, but I may be wrapping for quite awhile.


And just like that, it was time to see Dr. Panwalkar yesterday.  The look of shock on his face when he saw my wrapped arm was surprising to me.  

But after examining me, and seeing the fluid being retained in so many parts of my body- he decided to put me on some lasix, to help me get rid of the fluid.  He also held off on the taxotere yesterday, and instead I had the other two drugs for infusion.  He said we will decide on how to proceed with chemo/taxotere  my next appointment.  

He still affirmed that I will likely have to do chemo indefinitely, or until my body can no longer stand it.  It's a little sobering.

But I have so much to look forward to, that I am keeping my gaze ahead of me. 

We added a new charm in honor of our 3rd embracing life retreat this year- a dragonfly.  

"cherish your life, every single moment." Amen...











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When you get lucky

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