Monday, November 16, 2015

when moments sustain...

I'm trying to learn this new landscape of weekly infusions.  I come away from infusion with a steroid induced thrum going through my body, heart and mind.  I fully use it to propel me into going out, seeing people, steeling myself for the tapering off of those adrenaline boosting drugs. I'm making up lost time, from all the months of seclusion this summer and sickness.   So I live those moments full because I can go from active- to flat on my back in sheer exhaustion, in mere seconds. 

And the rest I am coping with?  Is more nuisance and inconvenience.  It feels like I need handfuls of Imodium to loosen the tether I feel to the bathroom.  And the bloody noses.  The dry, cracked, bleeding nose.  The vaseline, the humidifier, the saline, the swabs, the kleenex.  Just another taxol side effect, more bothersome than worrisome.   

So I had every intention of being here, updating all that's transpired this past week or so... but it was Saturday night, when I crashed in a chilly heap on the bed.  Nolan had hockey tryout scrimmages we'd attended, and despite the fact it was Superman's birthday, he was coming down with a cold, and so we simply ordered pizza in, and crashed early that night.  

But in between the urgent rush to live full, and the crashing and burning that comes shortly after?  Are all the sustaining moments that bless beyond measure.  

Because it feels like the hard, is cushioned with His grace filled gifts, always. 

Like when my cousin, Pam, sends me the above card, in black and white- its one of those moments that sustains me.  The words, seep right into my heart and I'm nodding and smiling because they fit me so.  She sends the best cards, with offers of help when I need it, and words that speak to me, and I just need her to know it sustains me so. 

And then, at the same time, my friend, Connie, comes and brings me the cross from above.  It fits so perfectly in my hand, and I'm clinging and holding and hanging on again.  Thank you, Connie.  

Then the surprise from the Brantners.  They don't even know me!  But they bless us with a Bell State Bank Pay it Forward check, that is generous, and touches me, because they've never laid eyes on me. But they humble me so, and honor me in a way that is hard to attach the right words to.  But I'll start with these... Thank you, Laine and Tiffani.  We went to the Moorhead bank branch and deposited it in my old "benefit," account.  Every time, its close to being depleted, something shows up.  I feel like He shows up.  And we bank our gifts, knowing when the new deductible hits in January?  We'll have help.  Blessed help.  

How about that collage picture on the bottom?

It was weeks ago when the call first came.  I was sitting in the PT waiting room, surrounded by patients, waiting my turn for the Lymphedema therapist to see me. 

I answered the phone in a hushed voice, and heard a hushed voice in return.

"Hi Vicky, this is Chery.  (Chery is a Psychologist that facilitates our stage iv group.) We were wondering if there is any chance you might want to go to New York City?  My mind hits pause, because did she really say, New York?  Me, go to, New York?  

"We have a Breast Cancer Conference, sponsored by the Avon Foundation, and were wondering if you'd like to attend with us?  I'll go, and one other, plus you."

But most of this is somewhat lost on me, as its noisy in the waiting room, and I can barely hear, but I know I heard New York, and I'm saying Yes! 

And suddenly, its only a couple of weeks away, December 1st, and I'll be leaving for New York City! We booked our airline tickets, and reserved hotel rooms, and the excitement of going keeps drawing me forward, sustaining me.  The Avon Foundation granted us money to help run our support groups, and my mission?  To help garner more funds!  

And I have a special friend, Barb, with both enthusiasm and wonderful taste for fashion and style.  She generously brought the "New York City," bag from TJ Max and filled it with things I could wear!    She clipped ideas in pictures(above) and ran them past me, and then proceeded to get me all the right sizes, and mix and match colors and truly just gave me the confidence to feel like I'll look fine when I go. 

Could the sparkling cider have arrived at any better time?  Linda made sure to include it in a box with  a pretty sweater, cute hats, and a scarf and the beautiful Rumi card.  Its a Colton favorite and he can't wait to open it and enjoy. 

As small as I feel sometimes, vulnerable, and stripped bare.   How is it that my life feels so big?  Far bigger in ways I could have ever dreamt it could be.  

Its Ann Voskamp that sings it home for me: 

“Humbly let go. Let go of trying to do, let go of trying to control, let go of my own way, let go of my own fears. Let God blow His wind, His trials, oxygen for joy's fire. Leave the hand open and be. Be at peace. Bend the knee and be small and let God give what God chooses to give because He only gives love and whisper a surprised thanks."

I'll humbly be whispering my thanks tomorrow as I go in for lab work, then doctor's appointment, then infusion for Taxol, Perjeta, and Herceptin.  It's a long and full day... but this much I know is true...

~All shall be well~

Can I pray for you?

Please leave requests in the comments below if you are so inclined.  

Tuesday, November 10, 2015


It’s right when they pull the bar down over my head and wedge it into my lap on the rollercoaster that I start to inwardly scream, “Wait! I changed my mind! Let me off!” 

Who picks Space Mountain, at Disneyland, to be their very first rollercoaster experience?  

By now, however, it’s too late.

With a jerk the car moves forward, as the undercarriage starts grabbing the hooks, to lift it towards the sky.

By the time we are climbing, the car is clicking- each "click, click, click" ratchets my anxiety up a notch and I am sure this was a mistake. I press my knees against the back of the seat in front of me trying to hold myself steady.

I steel myself, surmising the drop will come, whether I like it or not.

And then there is that moment, that nauseating and violent moment where everything slows down... 

For a brief portion of a second I’m airborne, held in by that suffocating bar. 

Then down we go and I shriek as I hurl back into the seat!  I tell myself "it's over soon, over soon... over... I just need to ride it out.   It will end... 

Whew, it does.  I'm shaky-kneed and breathless as I walk away...

Its not until my boys ride their first "intermediate," rollercoaster at Hershey Park, that I get back on... this one in the light, and I'm more focused on how my boys will do, than myself.

These days I find myself, on a rollercoaster ride... like none other.  One that doesn’t end.  I'm flying around corners, hurtling up steep embankments, waiting... feeling my stomach lurch... knowing the plunge and the free fall will happen... again, and again... whether I'm ready or not.  

Weekly taxol infusion today...

Are you following Rory and Joey's story?  Heart wrenching and life-giving all at the same time.

THIS post, had me saying, me too!

Pretty sure love made my hair fall off, too.  

It's love after all, that beats cancer, every time.

Next blog post later this week- filled with all kinds of love that is seeing me through- plus my next big adventure...

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.


To go to the cities.


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?"


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.

When you get lucky

When you get lucky

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