life outside of hockey

Just a week after a big weekend in the cities, we packed up and left for another exciting weekend of hockey in the cities.  Nolan's pee wee team was doing a cities swing, and had 4 teams lined up to play.  

I'd have to say the stories surrounding our weekend of hockey, were equally made up of the stuff surrounding those 4 games, rather than just the games themselves.  I am working on editing some of Rick's photos for another post, but had a few other stories to share first.

Like, Parkers orthodontia appliance nightmare.  Parker's orthodontic appliance fell off his tooth and was left dangling, dangerously from his mouth.  He missed the whole first game.  So we either had to get it glued back in his mouth, or pried loose somehow.  Luckily Cathy was with us and knew what to do... but how without the proper tools?  They tried, gum, tiny screwdrivers, an eyeglass repair kit, denture cream, Urgent care, and one dentist office that refused to see him because it was closing time (Friday at 5).  He couldn't chew, or play hockey, and sleep I am sure was difficult.   Macgyver seriously had nothing on all of the stuff they tried! 

But after a zillion calls, someone found an orthodontist willing to come into the office and take the appliance off early Saturday morning.  

Nolan was his own special case.  Just minutes before we pull into the Augsburg Arena where we play our first game, he announces, "Dad, I need my skates sharpened, oh and my lace broke and I need a new skate lace."  

Hmm... what's that saying?  Lack of planning and forethought on your part does not constitute an emergency on my part? Yeah, well, it sort of does.  

So Rick starts asking around.  No skate sharpener at the rink. No laces to buy.  No time to drive 20 minutes away to have them sharpened.  But... it just so happens, the Augsburg women's hockey team is playing on the other side of the rink.  And who do we know who plays for them?  Kendall Christian, from Moorhead.

#14 looked amazing on the ice.  Fast and feisty, you can tell hockey at Augsburg is a good fit for her.  We couldn't have been more proud to cheer her on.  Plus she totally hooked Nolan up and someone from the women's team sharpened his skates.  

But the other tie we have to Kendall?  

Kendall's mom, Lisa, has breast cancer too.  I've been waiting to see her.  She lives blocks from me in Moorhead, but we've yet to sit down and talk.  But she was maybe coming to the game.  We watched and waited, and then, there she was.  Lisa was so happy and surprised to see Rick, and then she saw me.  And I think when you are face to face with someone fighting your same fight, its like Twins speak.  You just lapse into a conversation that most people can't begin to digest.  And you can skip over words and the other can fill in the blank.  And looks pass between you that make your heart ache, for all the knowing they contain.  

I've been waiting for a chance just to talk to her.  Leave it to hockey, to bring us together, hundreds of miles from our home. 

As if we didn't have enough hockey to play in, not only did we watch part of Kendall's game, but we got to watch the Spuds play.  The played a gritty game and won 4-0.  

I have so much to catch up on.  I have clothes to wash, groceries and Target runs to make.  Oodles of photos to edit.  Oh, and its chemo tomorrow.  I'm exhausted just thinking about it.  Happily, exhausted.

Its worth it.  

These past three days, we played and watched, a lot of hockey.  And our team? Well they continue to struggle.  But sometimes, the life that happens around hockey, is just as important as the game of hockey. 

Matt Cullen's 1000th game celebration

On Saturday, January 21st, Rick and I headed down to the Xcel Energy Center to watch the Minnesota Wild take on the Dallas Stars.  It was also officially Hockey Day Minnesota, which our own town was honored to have hosted last year.  But the biggest reason we were going to the game?  Matt Cullen was being awarded the silver stick from the Wild organization for his 1,000th game in the NHL.  Rick graciously accepted when Bridget Cullen asked if he would go and take photos of the ceremony and the game, and the party afterwards.

I was feeling so poorly there for awhile, I didn't think I would be able to go.  But between eating lots of  spinach, kale, veggies and fruit all of last week and resting, I rallied, and everything fell into place for me to attend.

Now don't laugh, (okay go ahead... laugh) these first few images are mine, yes, with my little point and shoot camera.  This was my perspective of the game.

Nordy came to the suite for a visit...  as you can see, the arena was packed with over 19,000 fans.

The Target shopping cart zamboni is my favorite...  

Just for the full effect, I took a short video of a goal celebration.  The Wild officially went up 4- 2 with this goal. They entered this game on a 4 game losing streak after a long road trip.

And now, Rick's photos...

A few minutes before the start of the game, Rick texted me.  The Wild were letting him onto the player bench during warm ups and then he could take the ice and shoot photos of the ceremony.  He was beyond thrilled with the privileges they were granting him for the special occasion.  He took 1500 photos over the weekend!

Matt waving to the crowd.

Matt's beautiful wife Bridget in white in the center, standing next to Matt's Dad, Terry, who is holding their youngest, Joe (1), with Wyatt (3) and Brooks (5) standing close to him as well.  Matt's mom is standing next to the boys.

Matt receiving a crystal award for his 1,000th game.

The silver stick award. It looks deceptively light, and its not.  Its solid and heavy. I loved what the sportscaster said about the ability to play in 1000 NHL games- you are not lazy if you can do that!

This a close up of the "silver stick."

This is where I get all teary-eyed.  The Cullen Children's Foundation provides grants to organizations that provide funding for children battling childhood diseases, with an emphasis on cancer.  I know these funds will help a lot of kids! 

Warming up...

Rick stands behind the glass just behind the net while the players warm up.  The intensity always shows in their eyes.

The face-off.  I didn't see the stats, but Matt won a lot of face offs Saturday night according to Rick's photos.

Goal!  

You know there had to be at least one fight...

#36 is Chad Rau.  This was his NHL debut game and he is a Minnesota native.  And... he scored!!  Do you see the puck?  Its just out of reach of the Dallas defender trying to sweep it back from the goal line.  

  Look at the crowd behind the glass- the rookie just scored! 

The Wild win 5-2! 

After the game, Matt and Bridget hosted a party at a downtown restaurant.  While it turns out the restaurant owner had hired a photographer for the event, that was perfectly fine with Rick.  We relaxed,  talked amongst friends, ate yummy food, met some new acquaintances and had an enjoyable night.  

From what I could tell  Matt's team mates showed up en masse.  As did Mike Yeo, the head coach and many others from management.  Its clear to see the respect everyone has for Matt.  

But more importantly, its clear how blessed both Matt and Bridget feel.  

"From what we get, we can make a living. What we give, however, makes a life."  Arthur Ashe

This is the quote you'd find on their Cullen Children's Foundation website.

They are the very essence of that quote. They're gracious, humble, and give back, immeasurably.  

Congratulations to the entire Cullen Family! 

She picked me...

If there is any great secret of success in life, it lies in the ability to put yourself in the other person's place and to see things from his point of view - as well as your own.

- Henry Ford

Last Friday I had the honor and extreme privilege to meet this beautiful woman. Lezlee Bertie had contacted me before Christmas.  Each year, the company she works for, Evolution1, has a board who selects a few individuals for a program they call "Pay it Forward."  After reading my story in the magazine, On The Minds of Moms, Lezlee nominated me.  And... the board picked me as one of their recipients!  

Lezlee and her husband Sean, who is one of our Moorhead Bantam A coaches, invited us to their lovely home and one of her coworkers, Matt, videotaped a short interview with me.  In fact we all took turns answering some questions.  Matt will edit the piece to be used at their year end party later this year.  

I have to admit, I almost detach from myself in these situations.  I would be a teary-eyed, blubbering mess, if I didn't step back from the emotion just a bit to be able to take it all in.  But I am deeply humbled, touched to the core.  There aren't words enough to describe it.  There are hundreds, if not thousands of worthy individuals out there, fighting their battles, carrying large burdens, suffering in some way.  

And she picked me.  They picked me.  

We think we're going to try again.  To go.  To make memories with our boys.  A trip, to warmth and sunshine later this spring. To gel our family unit, laugh more than we cry, and know, that no matter what the future looks like, we lived it fully and without regret.  

Its more than a check or a generous outpouring of financial resources.  Its life-affirming, breath-giving, giddy-fun producing.  Its soul nourishing.  Healing.

And do you see what else it is?  Just look at the photo and see if you see it, like I did.

It's light.  Visibly emanating from the check, is pure radiant light. 

Thank you Lezlee, and Sean, and Matt, and everyone at Evolution1!  

Rick and I  promptly got up Saturday morning and left for St. Paul to attend the Wild game.  Matt Cullen was being honored for his 1,000th game!  I have so much more to share over the next couple of days... 

Whispers, and a favor...

I'm saying this in a whisper...

I think my mastectomy wound is healing... 


The nurses and I have smiled and cheered a little before, thinking we'd sufficiently had it closed, only for it to burst open after a chemo session.

So this past week, after chemo, I held my breath, and paid it no attention.

Monday I went to the wound care clinic.

It was very anti-climatic.

The nurse simply said, to keep an eye on it, but I didn't need to come back.  I just couldn't go cold turkey however.  We put a wound pack on just to be safe.  But I peeked at it today and its still scabby, no holes, no fluid leaking out.

And just like that, I've graduated from the wound care clinic.  


Small victories.  They get overlooked sometimes when larger hurdles are on the horizon.

Your life is something opaque, not transparent, as long as you look at it in an ordinary human way.  But if you hold it up against the light of God's goodness, it shines and turns transparent, radiant and bright.  And then you ask yourself in amazement:  Is this really my own life I see before me?  ~Albert Schweitzer

Its gotten cold finally.  The ache in my back forewarned me the weather was changing.  There still isn't a lot of snow.  But the sun shone brightly in the sky today.  As I sat waiting for the school bus to come, I noticed how the light streamed through the window, showcasing the flowers mom bought for me.  It was fleeting, but it served to remind me that the larger things on the horizon, are still surrounded by light.  I'm choosing to abide by that thought today.

Can I ask you all a favor?  I've always said, the only thing I can imagine, more difficult than what I am going through, would be to watch one of my children go through cancer.

That is exactly what this family is going through.  The Schoenecker family have a 6th grade daughter just recently diagnosed with liver cancer.  Its a rare cancer, and the prognosis is not very good.  However, their faith is strong, and they are resting in His hands, His love.  If you are so inclined, would you say a prayer for Kennedy and her family?  This is her caring bridge site, Kennedy Schoenecker, if you'd like to read about this spunky and competitive girl yourself.  I know the family covets your prayers!  Thank you! 

In the quiet moments...

We've been hauling kids to hockey the past few days.  Rick takes the out of town games and I've stayed home getting Colton to his games. We're often bypassing each other and haven't connected a whole lot lately.   I don't have the long drives he does, but I do have goalie gear to contend with.  I think we're even, right?  

For the first time in a long time the 4 of us sat down to dinner together last Friday.  We had early practices and it made the perfect occasion to go out for dinner.  With my acid reflux somewhat controlled by the ulcer medication, I feel like I can eat again without fearing all the repercussions. 

Because its felt like ages since I've really talked to the boys I tried to start conversations with them over dinner.  It went something like this:

Colton, how was your day?  

Long pause, then, I'd say fine, pretty much fine.  

What was your favorite part of the day?

Shrugs his shoulders and keeps looking at his plate.

Anything special?

Nope.

He is very intent on eating and not giving me anything so I say:

Colton, wouldn't you like to know how my day was?

Without flinching he deadpans:

Not really.

I'm trying to contain my smile as I about fall of my chair from laughter.  That's my boy! At least he is honest.

Okay... Nolan will be easier.

So Nolan... how was your day?

He blushes, tries to hide his smile then talks out of the side of his mouth:

Ahhhh, it was, well, it was, okay.

Just okay?

Yeah.

Anything special happen?

No.

Anything funny?

Nope.

Nolan, what's the deal?  You used to talk nonstop about your day.  Do you want me to come tuck you in tonight and you can tell me all about it?

Gees mom, no.  

Nolan, I just want to know what is going on with you!  (I tease him, in a mocking tone.)

Gees mom, its called puberty!  I'm not supposed to talk to you anymore!

Well okay then.  

Saturday night the phone buzzed with a text.  Nolan was telling me he had scored a goal in his game and they won.  I called him and talked to him.  I boldly told him I love him at the end of the call... very quietly and quickly he said "I love you too."  

Ha! Take that, puberty! 

Elephant eviction notice...

Tuesday I was armed with questions for Dr. Panwalkar. But the first thing he mentioned was that my platelets were pretty low and he didn't know if the study would allow me to do chemo that day. He also brought a third year med student with him. We are both a bit taken aback when he suggests that she do my physical exam. Clearly he was in a jovial mood and I climb on board.

The med student smiled bravely, but she seemed unsure of herself. Especially when Dr. Panwalkar grins and says "Lets see if she can find your lymph node." I chuckle and shake my head knowing he is sending her on a wild goose chase.

Of course she heads for my left side first, the wrong side, and I can barely feel her attempts to find a swollen node under my arm. Her touch is light and hesitant. I can sense how "put on the spot," she feels. I catch her eye and motion her to my right side. "Hey, no cheating," Dr. Panwalkar says sternly, but he is laughing. I grin right back at him as I lift my right arm for her and whisper to her its tricky. But again her touch is too light and I know without pressure and a firm touch she won't find it.

She finally looks to Dr. Panwalkar and says, "I'm not finding it." I empathize with her as I've only just discovered it for the first time myself a few weeks ago. He steps in now, gently guiding her step by step teaching her how to perform the exam, until she finds it.

She is equally perplexed when she goes to listen to my heart. Again, I just want to tell her what she is hearing is okay. I can feel how fast my heart is beating and sense her alarm. She listens and listens and then timidly says "Well, its beating pretty fast." Dr. Panwalkar and I both get a good laugh as he assures her its normal for me.

He then completes the exam.

He is surprised to hear I still have an elephant sitting on my chest- an elephant that went on a diet, but he clearly hasn't gotten the eviction notice we've sent him. I am prescribed a medication used for ulcers with the thinking my esophagus may be damaged and needs help to heal.

We then tackle the issue of the next set of scans I need. With both the oncologist on call last week and the ER doc saying no way would they risk giving me CT scan dye again after reacting to it twice, we need a new option. We could do a PET scan but with our insurance benefit covering one scan a year- and me getting them every 9 weeks, I can't afford a 7 thousand dollar scan. We will have to think this one through.

Its nearing the end of my visit so I broach the subject of my newest lung spot and brain "blob." I ask him what it will take for him to "call progression," and take me off the study. He reminds me that the two new areas aren't delineated as cancer yet. The lung spot would have to grow, and the spot on my brain has to assert somehow that it is cancer. Even though they suspect that it is, it has to not light up on the MRI or clearly show growth, neither of which it has done yet. It could be he says, that my lymph node will progress or new spots will show up elsewhere first, before either of the other two will do anything. I smile a bit thinking the "light" in the blob is keeping me stable and on my study.

I hadn't even thought of these options. I get so focused on one thing sometimes, to the exclusion of all the other equally important things. I've taken up the full hour and its now my infusion time. But I also realize with more certainty, just how uncertain the road ahead looks. I have to stick to my mantra of staying in today and letting tomorrow take care of itself.


He calls the study mentor who says that I have just enough platelets to do my chemo. Treatment number 14 is now complete.


I'm still counting gifts: Tuesday I count "laughing all the way through a visit with the oncologist." Someday I have to figure out a way to record Dr. Panwalkar's laugh. Its hearty, and infectious, and filled with a joy that he seems to carry with him.

I also capture bare feet in the middle of a January day in Minnesota, and this counts twice in my book.

The kids have asked daily that we try the new ice cream maker.  So after a good nap after chemo I got up and made ice a batch of ice cream.

It was slick, and in no time we had creamy, vanilla, sweetness on a spoon.  Yum-o.  

Low platelets have kept me feeling a little more fatigued than normal.  If anyone has any suggestions on how to manufacture some or boost my platelets, I'm all ears.  

How we do the day after chemo...

My little dog--a heartbeat at my feet. 
- Edith Wharton

When I am knocked off my feet, there is one little boy in this house who I can count on meeting me where I am.  Most days anyhow.

Back shortly with a full update...

"...shake the world..."

I was working on this post before my little speed bump of a hospital stay.  Wednesday morning I felt pretty good.  By early afternoon the pressure and tightness were back in my chest.  With Rick scheduled to leave with Nolan for three days for a hockey tournament, I had to call in to the oncologist's office on Thursday. They suggested I get myself to the ER and that no, the walk in clinic would not see me.  As I made plans for the kids... there was a knock on my door.

I went to the door and "love" floated in like a hot air balloon anchored to a basket.  And after freeing the basket from its shroud of plastic, we stepped back and oohed and awed over it.  Then someone plucked one of the skewers and the smile in their eyes as they ate their flower was enough for all of us to dive right in.  It was sweet and perfectly ripe, and we ate and ate.  What else would you expect love to taste like? Thank you Barb and Russ!

Rick left with Nolan on Friday and I came home and slept, and rested, and slept again.  Colton and I had 4 hockey games over the weekend and were on the run the whole time.  Our whole family is exhausted today.

But we're feeling rather spoiled.  I know its an odd thing to say given our situation right now.  But we don't take lightly the kindnesses and the generous blessings that have come our way.  We're completely humbled by it all and continue to be blown away by the abundance in our lives.  We continually seek to pay it forward in whatever ways we can.  

Saturday we were completely surprised by another knock at the door.  Can you guess who may have been thinking of us and sent us Cullen t-shirts and Wild hats from the The Hockey Lodge?  Bridget and Matt Cullen.  Lets just say there may have been "squeals of delight," involved.  The Cullen's do so much  for families with cancer, and our family has been no exception.

This morning, I grabbed clean clothes for the boys to wear to school and they ignored them.  Instead they ran for the Wild t-shirts and hats and socks and decked themselves out before leaving.  Plus they ASKED me to take their picture.  

Matt will play in a career defining game tomorrow- his 1,000th game in the NHL!  Help us cheer on #7 tomorrow of the Minnesota Wild! 

 Bridget wrote us a note and then added a quote that spoke to my heart at the end.  She got to see the photos Rick took at the Wild game we attended a few weeks back on my blog and read my blog for the first time. She left me with this...

“In a gentle way, you can shake the world.”

Mahatma Gandhi

Thank you Bridget, I'm honored. 

I think in our own way,  each and every one of us can find a way to gently shake the world.  What is YOUR way?  

Dr. Panwalkar and chemo tomorrow.  I have a list of questions prepared for him... smile... I'll let you know what he says...

Home

I'm home!

But I have to admit I was really well taken care of in the hospital. I had a room to myself and it had a huge window overlooking Fargo and Moorhead. The life flight helicopter landing pad was just off to the right of my room and it was fascinating watching it land and take off. It flies over our house in one of its flight paths and its really loud and makes us run outside and look up at it. Surprisingly it was much quieter from inside my hospital room.

My wound care nurse came to see me and said she notified Dr. Bouton but he was in surgery for the day. My research nurse came to see me, and I heard from others that tried to come see me. But Dr. Panwalkar beat everyone and when he said I could go home, my discharge came together pretty quickly. By noon, thanks to a ride from my friend Kim, I was walking through my front door.

I'd like to say I am 100% fine. But the elephant hasn't entirely left the room, or my chest. It may take a few days for the new meds to work and we may have to adjust things as we go. But, I feel much more comfortable in understanding what is going on with me. Plus I know I will see Dr. Panwalkar on Tuesday.

Thanks for all the well wishes and prayers.

I had a surprise visit from a friend last night who brought me some thoughtful gifts. Thank you Brenda! The one I wanted to share, that she knew would speak to me, is a verse she found with a stunning picture on a calendar.

"God is light; in him there is no darkness at all. " 1John 1:5


The photo is gorgeous, as is the whole calendar.

You all really know how to make my word shine brightly in my life!  Thanks for being such gifts to me!