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-André 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.  

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.

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...

a little hitch...

I've got a new little hitch in my giddy-up...

Wednesday I awoke with my arm, hand, and fingers, nearly double their size.  I've had lymphedema before, just never to this extent.  

I was so fortunate to get in to see Linda, a physical therapist who specializes in lymphedema.  She wrapped me right away.

I have about 7 different layers of differing wraps, from my fingers all the way up to my armpit, which only comes off so I can shower.

Its awkward and uncomfortable and typing/texting are big challenges! 

It makes me clumsy- the wrap, the swelling, the aching in my joints.  

But, underneath all of that?  My energy level has improved.  I feel better overall.  

That silver lining is always within sight when we just open our eyes wide enough to see it...

Plus... look who came to visit? 

This is my Aunt Elizabeth.  My Dad was her older brother.  And Crosby treated her just like family, jumping up and wiggling his way right next to her, somehow knowing she is family.  She came with friends, driving 3 hours each way, just to spend an afternoon with me.  Thank you Elizabeth!

I will continue with PT for 3 weeks in the hopes we can get the swelling down.  

Despite how I look, despite the limited use of my arm and hand,  I'm actively using this "second" wind and bit of stamina to keep moving forward.  

Its a big week with our embracing life breast cancer retreat on Thursday and Friday, along with Moorhead's Homecoming this week.  

I'm leaning in, awkwardly perhaps, but leaning in none the less.

What are you leaning into this week?  

grace

“But grace can be the experience of a second wind, when even though what you want is clarity and resolution, what you get is stamina and poignancy and the strength to hang on.” 

― Anne Lamott, Help Thanks Wow: The Three Essential Prayers

The beautiful basket of flowers my friend, Linda, sent to me.

Rick says he gets asked all the time, "Great news about Vicky's scans,  is she out enjoying herself?"  And he smiles and shakes his head, "no, not quite."  

Even though this week will mark my second week past chemo- I haven't fully come back into feeling well.  I tire so easily.  I walked across the street yesterday, sat in the sun a bit with my friend, and came home with the gift of a pie plate full of delicious apple crisp.

But I was struggling to breathe just from coming across the street.  The sun had zapped any energy I had and I tumbled into bed exhausted.  Again.  Just like the day before.  Which reminds me of Friday, and most of the days before that...  as I experience a myriad of chemo side effects.  

In truth?  I barely leave the house.  My world feels very small.  My mind quiet.  My voice hushed.

But October has some big dates circled on the calendar.  The "embracing life," breast cancer retreat will be October 1st and 2nd.  I will be doing part of the "Using technology to promote healing, panel."  And our stage iv, fourward, group has a special presentation we are working on.  And Dr. Panwalkar will be part of a panel of experts answering all of our questions.  I can't believe its the 3rd retreat already and I've been given the honor of being a part of all 3. 

It's also Moorhead High School's Homecoming Weekend, and Nolan went to great lengths to surprise a sweet girl with an invitation to attend the Homecoming Dance with him... and she said yes.  Of course, that is about all I know, but am hopeful more will be disclosed when he is ready to share with me.  Oh to be 15 again. 

In the meantime my prayers include asking for the very kind of grace that Anne Lamott speaks of- a second wind ripe with stamina and strength to hang on and just keep going- living out His will for my life.  

The results...

Good Shepherd, our lovely church was the last stop we made before heading home Monday night.  It was another glorious sunset and it left me with such peace in my heart.

Earlier I had taken a few pics of something else that spoke to me.  My hydrangea plant has been barren all spring and summer.  It had so many blooms last year, and I longed to have them again this summer.  It had started to green up early, filling me with hope, and then we plunged into below freezing temps a few days, late this spring.  It seemed the flowers were not going to bloom this year at all.  But we never stopped watering the plant somehow, nurturing it, loving it, while we waited.

Until one day late in August, out of the blue, I stooped down as I watered, and look what I saw?  One single blossoming flower- in a lovely purplish bluish hue.  

Its fitting for the kind of summer I've had.  These minuscule moments of joy, hidden in a landscape of   hard and heavy.  But the light seems to always find a way to shine through, doesn't it? 

Dr. Panwalkar strode into the exam room yesterday morning right on time.  But stopped right at the door and...

maybe, for one of the first times I've seen in a long time...

He looked right into my eyes, and he was beaming.

He shook hands heartily with Rick, then with me, smiling as he greeted us pleasantly, and sat right down.

He fired up the computer, and we sat waiting for the images of the scans to load.  

"Oh come on..." he said impatiently.

For whatever reason, I was really calm.  

Slowly the images began to load.  

PET scan first.  He orients me to the direction, and puts the oldest and newest side by side.

He syncs them together, so that slice by slice, we can see the differences.

And let me just say, friends, oh my!  They were SO different!!

The old one, glowed yellow.  That disgusting, gut wrenching, glowing cancer activity that seemed to inhabit every slice we worked our way through.

But that isn't where we focused...

my eyes were glued to the spots, not even showing up on the other side.

Smallish splashes, mere hints of yellow, here and there.

But nothing in comparison to what it had been!

From my lungs, to my uterus, my bowels, my colon, my pelvis, etc., minimal signs of disease.  

Then we looked at the CT scan in black and white where its easier to see the cancer spots in white.  Side by side, we watched as some spots on one scan would completely not show on the other- some were gone!  Others, were definitely smaller.

But we still had one scan to go- my brain MRI.

Slowly they loaded, side by side- old and new.

I had a rather hard time with the scan on Tuesday.  They couldn't find a vein in my arm, to inject the contrast dye.  I quit counting the pokes, at 7 or 8.  Two techs, and no sweet spot on the only arm they can use.  Its so covered in black and blues spots... but I'd do it all over again... because...

For whatever reason... my two brain spots?

SHRUNK!

Even though, chemo is not supposed to cross the blood-brain barrier?

Somehow, it must have!  

Dr. Panwalkar said, sometimes chemos do cross the barrier, but its such a small percentage that they don't taut chemo as a good treatment option, especially when radiation has such a high rate of success.  

I'm smiling and nodding, and really, I'm thinking... it isn't just the chemo or the radiation- I think 

it's prayer that gets through.  It's prayer that passes muster.  

I think of my prayer list, that I gripped all the way through my MRI scan.  Over and over I prayed for all those who asked.  And for those who didn't?  I prayed gratitude for all you've done for me.  Over and over again.  

“Eucharisteo—thanksgiving—always precedes the miracle.” 
― Ann Voskamp, One Thousand Gifts: A Dare to Live Fully Right Where You Are

So Dr. Panwalkar suggests we simply keep going on with the 3 chemo drugs- but he will somewhat reduce the Taxotere.  

Big sigh...

With the laundry list of symptoms I have in my hands, knowing I will have to keep enduring all of them, is overwhelming.  Plus knowing, that living with metastatic disease, I am not likely to ever go into remission.  But knocking the cancer back, squelching its ability to grow for awhile, is truly a God given gift- more time. 

Plain and simple- it's working.  Amen! 

And so Dr. Panwalkar asks, "Any other questions for me?"

And I smile big.

"Could I give you a hug?"

And he is quickly standing,  as I rise up to meet him, and he hearty laughs while saying "of course," as his arms encircle me all the way around.  He hugs me tight, and I manage to whisper, "I'm so grateful for all you do for me, Dr. Panwalkar. Thank you." And he answers back, "you're welcome."

We slip out the door, and he ushers me into the waiting room chairs, but like always, he rubs my back as he then turns to saunter off into the depths of the infusion center.  

“It is in the dark that God is passing by. The bridge and our lives shake not because God has abandoned, but the exact opposite: God is passing by. God is in the tremors. Dark is the holiest ground, the glory passing by. In the blackest, God is closest, at work, forging His perfect and right will. Though it is black and we can't see and our world seems to be free-falling and we feel utterly alone, Christ is most present to us...” 
― Ann Voskamp, One Thousand Gifts: A Dare to Live Fully Right Where You Are

brave?

“When I lost my sight, Werner, people said I was brave. When my father left, people said I was brave. But it is not bravery; I have no choice. I wake up and live my life. Don't you do the same?” 

― Anthony Doerr, All the Light We Cannot See

I've been stretched in all the usual ways I would want to "wake up and live my life," as Marie-Laure, so aptly states in the book, "All the Light We Cannot See."   

While I've regained some of my strength, and some energy, it's a minefield of uncertainty as to when I'll run out, each day. When my breathing becomes labored, when my energy packs up and leaves with little notice, when my legs go stiff and stop working, where will I be?  

Feeling confident and energetic one night, Rick and I went for a short walk.  I made it all the way down to the end of our street.  But the way back?  My breath starts shortening, and my lungs hurting, I get so light headed, the edges around me start to fade.  Thank goodness I could intertwine my hand in his, and use his stability to propel me forward.  I'm learning about "strength," in brand new ways.      That some days its leaning, and some day its face-planting in bed, just getting by.  And some days, its just about getting up, and trying again. The biggest lessons, seem to arrive in the tiniest moments.  

As Ann Voskamp so aptly writes, “Who would ever know the greater graces of comfort and perserverance, mercy and forgiveness, patience and courage, if no shadows fell over a life?” 

So I spend my weekend, chemo-nesting.  Preparing once again for the upcoming week of appointments, scans and doctor visits.  I washed the sheets, the pillows, the tattered comforter, trying to refresh my bed, my place of retreat and refuge.  My days get so long, so quiet.  I need ways to pass the hours.  To quiet my mind as it races forward wondering, how long?  How much?  And sometimes just, how? 

It's Sunday afternoon, and the rain gushes down, shoving our plans to go to the lake on the back burner.  The boys are restless, longing for something to do.  So we decide to go to dinner.  Despite how carefully I've chosen my foods and cut back on calories, I continue to expand with fluid retention, and underneath it all I am deeply craving comfort food.  

So I just decide we should go.  And even though we're driving on the highway, Nolan should drive- his first time on the highway.  We talk about merging, and how to navigate road construction, and I marvel at how he exudes such confidence.  He admits to feeling nervous, but does not let it get in his way of performance.  We're all being stretched in new ways.

We eat a delicious meal.  I'm savoring each bite, as my taste is finally close to normal again for a few days. And we tell funny family stories.   Like how Grandpa Jim accidentally fed Colton a big slice of "okra," he thought, except it was a jalapeño pepper and Colton's eyes leaked tears all night long.   How the only time I've ever gotten a phone call from Nolan's teacher, was when he was in preschool. He was hugging a cute girl named Ivy- and through my suppressed laughter I agreed to adhere to the new rule, "No, no, no, hugging Ivy." As soon as I laid eyes on Ivy?  Well, who wouldn't want to hug that sweet girlie!  

We ended our evening with one more spontaneous move.  As we headed back towards home, the sun was rapidly going down.  Rick swiftly maneuvered our way out of town.  It's one of only a few sunsets I've witnessed this summer.  

But this is where I find the most life.  This is where I live my moments most full.  Surrounded by my boys, our arms firmly entrenched around each other, love at the center of it all.

These moments have been much harder for me to cobble together this summer.  But I long to keep trying, to find these moments, and live them full.  

Tomorrow I have a brain MRI with sedation, after we get the boys off to their first day of school. 

Wednesday, I see Dr. Panwalkar, and go over both my PET scan results from last week, and my MRI results from tomorrow.  Then off to infusion to round out my day.

I will have ample quiet time again- and so- how can I pray for you?  

Will you send me a message?  An email?  Or leave your request in the comments below?  

I covet your prayers in receiving my scan results- please pray for strength in handling whatever is to come our way.  

~all shall be well~