Part of me now...

Happy (a bit late) Birthday, Superman.  So thankful, you share your heart with me!  Aren't the heart shaped sparklers cool?  It's like love on fire, literally.  And here we are, side by side, through it all. 

Would you believe the sparklers were a part of a"goodie bag" for my first role in a documentary?  If you go to imdb, and google my name?  The documentary I was beyond honored to be a part of,  "Part of me Now: Living With Breast Cancer," will pop up.  We're just waiting for the director, Emily Gerhardson, to announce how we can all see it.  She's done an amazing job from start to finish in getting this project out into the world- so many film festivals it has gone to- we're just hopeful it gets picked up somewhere!  

Thanks to Ria for capturing this at the end of our photo session last August- somehow she always finds the best light.  

Speaking of light- I've spent days and days going through photos we took in and around Pittsburgh.  The light was simply stunning and the leaves were in full color.  I've formed such a deep connection to feeling "alive," when I spend time in nature.

 “I felt my lungs inflate with the onrush of scenery—air, mountains, trees, people. I thought, ‘This is what it is to be happy.’”

—Sylvia Plath, The Bell Jar

So many places and activities we savored in Pittsburgh have continued to stay with me... despite how much I had to concede and surrender along the way.  It became quite clear when we arrived back home, the toll so much of this "journey" has taken on me.  Two days after we arrived home: 

Tuesday,  November 1st, 2016

Roger Maris Cancer Center

He strides into the room, his voice booming, "Hello, Vicky, how are you?"  Then he stops mid-step.  One look at my face, and his whole demeanor changes.  I have yet to truly say anything, but he reads me in that moment.

"Ohhhh, what is going on with you?"  Dr. Panwalkar's face falls from smiles, and registers concern, as he scans my face.  His voice softens as he sits down, but turns to look at me as I try to answer him.

"I just don't seem to bounce back like I once did."  I shake my head, and say, "I just don't know what is going on with me."  He starts to run through the list of questions about fatigue and appetite, sleep, and breathing.  

My appetite is good- but my tolerance for so many foods is limited.  I feel sick, after I eat, with a tenderness in my lower left side.  I still eat.  I'm just never sure what will set my stomach off.  I can certainly use meds to calm it back down. But soon the gnawing sets in again.   It's just a vicious circle.  I can't see clearly enough to cut a clean swathe through the maze.  And really?  The bigger question?

Are my symptoms treatment related?  Or is it cancer progression.  My blood work actually looks good.  Although my tumor markers have climbed yet again.  

He thoroughly examines me, asking questions as he goes head to toe. 

He's nodding his head when I offer, "that small inner voice is telling me to scan."   

 Dr. Panwalkar helps me sit up, then goes to sit and begin the process of garnering approval for a PET scan, and a brain MRI.  Soon, we shift to discussing what a new treatment might be.  

He mentions going back to Taxotere, since I had a good response to it, and we quit before it stopped working, due to my intolerance for the side effects.   He also mentions another chemo agent I'd done before- Halaven.  

And then, mustering much enthusiasm, he mentions the one I've blocked from my mind- Adriamyacin- also known as "The red devil."  

I'm nodding my head, understanding the gift of knowing I have options, while also sliding right into denial, so that I don't have to focus on the toll those options can take on a weary body and spirit.

He also mentions looking into immunotherapy trials and asks where I'd be willing to travel?  "Anywhere," is our answer.  But just days later our insurance agent informs us my new policy will only allow me to have treatment at Sanford in Fargo.  I try to cling to gratitude that I can still at least find a policy that will take me on, despite its limits, and expense.  

Dr. P and I conclude our time together, and he ushers me out of the room and walks with me to the infusion waiting room.  He stops and motions towards the seating area, but then looks at me, and rubs my back as he smiles and simply says, "See you in 3 weeks. We WILL get to the bottom of this."  

So I get up each day and I try.  Some days it's merely hours later, and I'm back in bed, down for the day.  But each day I push a little more.  

After a day of resting at home, I take a chance and attend the steak fry fundraiser for the Moorhead hockey team.  I even managed to eat half my meal and felt so encouraged to see so many friends attending.  I manage to clean house, spend time outside with Crosby, and work on this blog post.  Stringing all of these moments together crafts a sort of "seat belt" that tethers me in place, for the curves we endure on this tenuous ride.  

At the end of our trip to Pittsburgh, we go to say goodbye to our friends, Matt and Bridget Cullen, after the Penguins come away with a big win. Smiles abound.  We've had such a great trip.

Those light-filled eyes, and big smiles, from the bigs and the littles, melt my mother's heart.

We're pulling out of the parking lot after the game, when the car with the little boys stops.  Their Dad says, "I have some pretty sad young boys who have requested just one more hug from the big boys?"  

He has taken the time to stop, and they all unbuckle and tumble out of their car seats... as my big boys jump out of their seats for that last big hug.  The littlest guy looks up at Colton, tears streaming, "l'll miss you!   Please come back again soon so I can see you!"  

Out of all the moments, so very many of them, its this one I tuck away in my heart forever.  

My brain MRI will be Thursday with sedation at 1 and scan at 2.  Then the PET scan will be at 730 am on Friday, with injection at 730 and scan at 9.  

How can I pray for you?  I will bring a list and pray fervently for anything on your heart and mind.

~All shall be well~

you'll need others...

Dr. Panwalkar strode into the exam room last Tuesday, and after shaking hands, he plunged into asking about my back pain, before he even sat all the way down.  

"So what's this I hear about your pain?"

So I tell him all about it.  And as I do, he leans back, his hand resting on his jaw,  intently listening.  He asks all kinds of questions and then says, "Well lets examine you."

I breathe deep, a few extra times this time.  He is listening to something, but makes no comment.  I have no burning need to know.   Back, then front.  He checks my nodes, my neck, my shoulder.  He checks my abdomen, pushing in as I hold my breath... "Any pain here?"  "No, it's fine," I answer.

He thumps down my spine, finding no sore spots.  He checks for swelling in my ankles and arms, throughout my stomach.

He leads, I follow.  Mouth open, eyes staring, arms up, then down.  Till finally, he rests his hand on my shoulder, steadying me - the only sound- the buzz as he brings the exam table down.   He then pats me and nods at my seat by Rick.  I smile when he goes to shorthand, and I read him smoothly.  The movements are all choreographed in a way, and it calms me so, knowing we've done this hundreds of times.  

He again sits, leaning back, pondering what may be causing such discomfort.  Distance grows in his eyes, as he shares a bit about watching his grandparents go through treatments for pain back in the 80's.  It occurs to me Dr. P would have been a child at the time.  He suddenly blinks, and says "sorry."  But its those rare glimpses of him outside of being a doctor that help me feel I'm more than my label of patient, too.  

So he offers the idea that perhaps the pain is coming from radiation damage from the treatment I had to my lung awhile back?  And since neither one of us thinks it would be cancer, truly I just need to work on alleviating the pain.  He agrees with  both the ideas of seeing a chiropractor or seeking acupuncture, and mentions I could see Dr. Lien.  

As he makes refills on my scripts, he asks, "Any more questions?"  And he turns, drops his hands, and looks me in the eye to see I'm shaking my head no, and smiling.

We accomplish so much in our time together.  He is my "other people."  

Look at how others keep showing up to see me through...

Homemade baked goods- salty, spicy, sweet and yummy!  A young college student with a heart of gold who spent a day baking, then dropped it off on our front step- thanks Julia!

Shan mothers me so- the perfect box of natural pain relief and organic and yummy treats- all the way from Tennessee- a true box of love.  

All the way from Germany- Mimi makes me a beautiful beaded necklace with my favorite blue color!  The angel is pure delight.  I'm so touched by this outpouring of love from others.

As much as I love my Jesus Calling devotional- receiving a copy of this was pure gift- I dip in daily for spiritual nourishment.  Thanks Annie for the connection that endures.  

Sometimes, you get to be the "other" for someone.  Rick and I were so grateful to help my friend Karla, give something very special to her grandson, Brody.  With Karla's permission, I'm posting this fun surprise, a gift from one very special hockey player- to another.  

Who are your others?  Who might you be an other for?  

because it's the Cup

I awoke last Friday with a prayer of gratitude uttered from my sleepy self,  Thank you, God.   The big day is here!  And you've given us this beautiful, sunny, summer day at it's finest, to celebrate.

I could hardly wait!  We'd been happily consumed for weeks with executing the little details for Rick's role in the Celebration of the Stanley Cup with Matt and Bridget Cullen.  But first, it was time for the arrival of the Cup!  

It's 6:15pm when we arrive at the Barn at Five Lakes Resort.  

I simply brought my cell phone to shoot a few photos, wanting to just soak in the moments with all the friends we knew we would spend our time with.  

We knew we were in for something special... we had NO idea just how special!! 

But it's 6:30 when Rick and I discover we each have a voicemail message from Rick's Dad, Jim.  "Please call as soon as you hear this."  

We step out to the back of the barn, Rick ahead of me on the phone already.

 I have visions of Crosby having a seizure, or something to do with one of the boys.  Nolan, our new driver?  Colton?  My heart thumped wildly.  Jim wouldn't call if it weren't something we needed to know right away.

It's moments later that Rick appears, his eyes glistening.  

It's my cousin, Randy Gerdon.  Randy died unexpectedly at home- sometime during the night.

I'm instantly in shock- I couldn't have possibly heard that right?

What?  What just happened?  Not Randy.  He is young, 45, the father of 4 kids, husband of beautiful Sara.  NO, how can this be?  

We take a few moments to gather ourselves. Heartbroken. Few words to say to one another.  The knowing etched into our faces, with a shroud of shock all around. 

We slowly work our way back to the party, numb.

 We hear the whispers of the Cup arriving soon.  And we decide we have to stay in this moment.  We have to push the loss of our cousin off to the side tonight, for now.  Because if you knew Randy?  He'd completely agree.  Often the "life of the party," kind of guy that he was, he'd tell us to celebrate. 

Rick and I, having lived with the unknowing, uncertainty of the day to day with surviving cancer, we have learned to compartmentalize.  We've learned to shelve things, labeling the book, and only pulling it out when we need to. How else would we get through it all? 

So, somehow, we slowly stepped back into the warmth around us, the beauty of the landscape, the laughter of friends, and a once in a lifetime kind of weekend just beginning to unfold.  

Just moments before, I was giddy when I saw Ria, who would be shooting photos for the night.  My excitement mounted as I fully know the talent and vision of Ria will capture the purely "magical," feel that enveloped me as I approached the event.  For a true taste of the stunning shots that Ria took of the event, you would not be disappointed by a visit to her Facebook page here: rialeephotography. 

And who is the second person I run into?  Bridget Cullen.  We try to move out of the sun for a quick photo, because Matt and the Stanley Cup are arriving soon and she is on her way up the hill.  And yet, she doesn't hesitate to embrace me first, and linger for a quick photo.  

The crowd gathers.

Bridget, with Matt's mom, Nancy, who will go and greet Matt and the Cup when it arrives...

Matt and the Cup have arrived! 

After a few photos outside with the cup,  Bridget and Matt spent a few minutes shooting photos upstairs, and then the rest of us find our way up to see where the cup will reside the rest of the night.

My first time photo with the cup.  Matt won it with the Carolina Hurricanes in 2006, and with the Pittsburgh Penguins 10 years later in 2016.  It just doesn't get any better than this.

Moments later Matt embraces me and I tell him I'm choking back tears- because if I start, I may never stop.  So Bridget joins us and we're honored and humbled to be amongst such generous and giving people.  I'm sensing the ripple effects already beginning to flow out from all the blessings that abound.

Rick and I then move back outside as dinner is ready.  But first I grab our friend Julie for a photo.  The bracelet on my arm says, "I am blessed."  And the bracelet on Julie's arm?  Is the pink one made from skate laces by our friend Pam in my honor, over 5 years ago- and Julie has never strayed from wearing it.  She is the epitome of generous, thoughtful, and beautiful.  I'm not just wearing "blessed," I'm feeling it.

We then gather outside and feast on the smoked pork, and salads, and tasty food.

I can't even say the last time I have seen Jen, so its a treat to catch up with her- we pick up right where we left off.  

Everywhere you turn is a beautiful area to see and explore.

My sweet friend Nikki - it isn't often we both have a free night- but I'm grateful every time we do.  

I couldn't get enough of the golden sunshine,  mingled with laughter and celebration around every corner.

The sun went down and we gathered inside.  The champaign bottles were open and the Cup was filled.    And we watched as family members drank, and Cully's Kids Foundation members drank.  It's truly the dream of anyone who knows the reverance and prestige associated with Lord Stanley's Cup - to simply be close to it.  

But the Cup will leave at midnight for that night, and its close to that.  I've held back from drinking, but Matt smiles and gestures to me once more, and this time I will.  The Cup weighs 35 lbs., and so Matt and his brother Joe, along with his brother Mark looking on,  help tip the cup as I lower myself to drink.  Oh the sweet taste of victory.  

Walt, the keeper of the cup, has come along for this trip.  He shares with me that so many of the NHL players choose to celebrate the cup with a few family members and friends.  But Matt and Bridget's generous spirits humble me so, they desire to share the cup with as many as they can.  

Rick and I leave shortly after the Cup does, we have an hour drive back home and yet another big day ahead of us.

But look what is waiting in my messages when I arrive home?  A beautiful photo from Ria- a shot of the barn in all its glory, with a Superman standing next to me.  I'm overflowing with gratitude as my head hits the pillow this night.

The next day, was the day the Cup got to come to Moorhead, to the Youth Rink and every Moorhead hockey player was invited to come and have a photo taken with Matt and the Cup.  But first, Rick took one group photo of all the kids with Matt and his 3 boys in the center!  

I had forgotten my own phone and camera that day.  So Rick set up a chair for me and I sat and watched as Matt smiled and posed, for just over 1200 photos in 4 and 1/2 hours.   Our boys were the very last ones to go.  Matt's smile was every bit as genuine and sincere as it had been for the very first shot. 

(This will be the look of the photo that each Moorhead hockey player will receive. ) 

One of my favorites. Matt has a genuine gift of meeting you, right where you are.

 And he never stopped.  He did not take a break, ask for anything, or say no to anyone.  He brings professionalism to a whole new level.  Because I'm not kidding.  He took a half hour break to eat, and then went outside and brought the Cup to another huge crowd.  

Just look at all the people- the line was all the way around the building!  And Matt gave even more of himself as he took photos until 8:30 that night, for a Sanford sponsored event.  

A few of us, went off to a local restaurant to gather for dinner, and await Matt and the Cup.

Nolan was excited to see Ben, Matt's cousin.  Ben and Nolan are high school rivals on the ice, but friends the second they get off.   We're so excited to have the chance to watch them continue to play in the years ahead. 

This guy was all about the Cup.  He threw his arm around it and admits he kissed it. He posed for all kinds of photos with the Cup.  That grin is coming from the sweetest spot within that boy.

And this guy too.  No shortage of smiles this day. He is so 16 and I was not going to know all that he was thinking, but that smile spread across his face all day long too.  

Colton shows me where Matt's name is from 2006.  Soon, his name will be added for another time.


In so many ways, even though Walt was officially keeping tabs on the Cup, it felt like Matt was the keeper of the Cup in a way that weekend.  He lifted it, he tipped it, he offered it, thousands of times, to whoever stepped forward to partake. Matt has a way of staying present, and entering the moment with who ever is in front of him.  That ripple effect, of Matt and Bridget, giving so selflessly from such an authentic place, just keeps rippling away.  They're more than leaving their legacy, they are living their legacy, moment by moment, showing us all how we can too. 



It's Thursday now... 

Rest in peace, Randy Gerdon.  It was standing room only both, for your prayer service, and in the church yesterday at your memorial service.  We wore our Husker Red for you, and read all the scriptures you had highlighted in the bible, and laughed as much as we cried.  Clearly, you were living your moments full, too!  I have no doubt your joy-filled legacy and that hearty laugh will go on in all of us always.  GBR! 

simply living

Someone is always watching over me, so it seems.  While preparing for my MRI a week ago, I received a call about my PET scan.  Could I do it the 8th of June?  I had to laugh- of course I was scheduled to get the results of the test from Dr. Panwalkar on the 7th of June.  Lucky for me, when word made it back to Dr. P he simply said lets get her scanned on the 7th and I'll see her on the 8th.  

As I sat in the exam room waiting for Dr. Panwalkar, Annie peeked her head in to say hello and show me the cutest new picture of Grace, her puppy.  We chatted briefly and she wished me well. 

Dr. P strode into the room and over to the computer desk, flipping the screen on right away.   In a straightforward manner, he said "Well your PET scan report was good.  I just read the report- haven't looked at the scan, but lets see."

I'm still a complete rookie looking at scans.  But he spends his time orienting me to the various organs and directions we're going.  Its when he gets to the lungs that he slows.  "Here's the spot.  Lower left lobe of your lung, is lit up.  The radiologist says its consistent with inflammation of some kind."

But I don't feel relief.  My questions come into play right away.  Is it radiation scarring?  Is it treatment related? I have such a long standing history with Dr. Panwalkar, he seems to know he has to give me more to stand on.  

  

 As I ask the questions, and Dr. Panwalkar seeks to find answers to them, he decides to go back through old scans.

And there it is.  Glowing bright yellow.  In the exact same place. 

6 months ago my scan was clean, and 3 months prior to that was ok, but last summer before I started chemo?  My lung lit up in the same spot, as it is now.   That was not inflammation.  Therefore, this is most likely not inflammation.  But only time will tell.

So even though the report sounds really good?  Dr. Panwalkar most likely thinks as I do now, the new spot is cancer again.  And again I need his reassurance that we can formulate a plan A, and B or even C, for treatment. 

He says we can go back to Taxotere- weekly maybe this time.  And he stretches way back in my history and somehow remembers I stopped Halaven, after having a really good response to it.  So I can go back to that one if need be.  He names off several chemos.  I'm just not letting it all soak in- I just want to float on the surface right now.

Yet, Dr. P is throwing lifelines like he knows I need him to.  He knows.  So much space and silence sits between us, but he doesn't fill it with anything but what I can handle right now.  There's knowing in the silence.

We also go through my brain MRI, which looks precisely the same.  Stable Mable.  

He motions to the exam table and I climb up.  He repeats his instructions to me, even though I should have every part of the exam down pat.  But he listens to my lungs, and then takes a moment and simply rubs my back.  No words.  Just compassion.  Slow. Steady.  He then checks my eyes, my mouth, my stomach, my lymphedema- everything.  Then he thumps down my spine and I tell him its fine.  He stands then and pats that place on my back again, reassuring, and says "I think you are doing really good."  

He goes to sit down and I ask, "How are you, Dr. Panwalkar?"

"Me?"  He responds, sounding surprised.  "I'm doing well.  Thank you for asking."  

I tell him I see how the chaos of the construction, and all of the congestion going on in and around the hospital can be daunting on a daily basis.  So if he decides to move on- away from all of this- just let me know!  His hearty laugh reverberates through the exam room, but then he offers this gem- a life-preserver.  

"I'm not going anywhere.  Don't worry, I won't abandon you."  

With that I let go and feel all of the air start to expand my lungs again.

I may be treading water, but my head is still above the surface breathing oxygen.  I'll just keep swimming.  It's all I know how to do. 

A new treatment plan will take shape and the right time will come in the future.  

For now,  I'm just going to keep living in the "meantime." 

 It takes Rick most of the day Saturday to get the motor running on the boat.  With the hours of sunlight stretching into the evening, its time to go, despite our late start.

We're equally thrilled that Nolan decided he'd like to go.  He starts "remembering when..." on the quick ride to the lake and my mother's heart is brimming with the resonance of his sweet stories.  The summer we spent at The Miller's lake- weren't we so lucky they let us use the cabin for the summer?  Every detail he remembers and shares with us.  

The fishing starts off slow, little nibbles and bites.  We laugh at the little blue gills, and crappies they catch.  Then Nolan fights to land a northern that he lets his Dad hold up for him once its in the boat.  We're merely catching and releasing this day.

Once again, few words are needed.  It doesn't get much better than this. 

We end our night with pizza at Zorbaz.  I'm drunk with sunshine and being on the water and living with joy in the "in between."

We came home to conclude our weekend with game 6 of the Stanley Cup Finals.  It was the most "on the edge of my seat" anxiety-inducing, intense hockey I've endured in a long time.

But in the end?  There he is, our #7 Matt Cullen, with the rest of the Penguins, winners of the Stanley Cup!!  

Tears of joy and celebration fall, as I watch Matt's family gather around him.  Much more Stanley Cup celebration is anticipated in the weeks ahead.  

This morning, as I ease into this week, I begin my day with Jesus Calling.  

Sarah Young

June 13th

I am creating something new in you: a bubbling spring of Joy that spills over into other's lives... My spirit flows through you to bless others.  Let yourself become the reservoir of the Spirit's fruit.

Your part is to live close to Me, open to all that I am doing in you... Just keep focusing on Me as we walk through this day together.  Enjoy My presence which permeates you with Love, Joy, and Peace.