after all the words...

I've been longing for some clarity, and ability to sit comfortable, and write to my heart's content.  The urgency on so many levels enshrouds me- how can I not write it all down per usual?   Yet, I feel disappointed when first days go by, then suddenly its weeks, and that chunk of me that is expressed through writing? Is stumped, and stifled in some way. 

So I'm just going to try.  I'm standing by the water with my toe hovering inches from the edge, wondering if it'll be too cold?  Will it be rocky and I'll slip?  Will my feet cramp?  This isn't really me- I simply know if I'm at the edge of any body of water- in is the only way to go.  So this is me - jumping right in.

I saw Dr. P yesterday and the first thing he asked me was about the tv story!  So here is the link to the WDAY story as promised many moons ago.  It was a precursor to our spectacular week of hockey.

Kevin Wallevand is a gifted reporter.  I think he and the photojournalist, Devin Krinke spent nearly 2 hours interviewing me.  Then Devin spent 7 hours, editing all the content down into the beautiful story.  I'm in awe of the sheer magnitude of their talents and work!  And shaking my head- they picked me- still humbles me to this day.  

WDAY story here:  Moorhead Hockey Mom Puts Cancer Treatment on Hold to Attend State Hockey Tournament.

The outpouring of support and love we felt was immense.  They even ran the story again as the first story of the newscast at 10 o'clock that night.  I was already in the midst of hockey in St. Paul, so I didn't see the story as it happened- only much later when a link was provided.  But then I started receiving texts from people in the Minneapolis area telling me the story was running locally too.  So cool!  I love that it highlighted our hockey community to an even broader audience.  

 So lets get to the main event- truly these are just a few photos from our spectacular weekend at the State Hockey Tournament.  Here is a pic of all the moms who wore their sons jerseys and we were gathering while waiting to see our boys.  Are those faces not beaming?  Sheer happiness, that I don't think any of us will soon forget.

This was the first night, at the Xcel Energy Center.  There's Nolan, putting out the back of his hand to give a high five to whoever the young boy is reaching out his hand.  Its surreal as a mom to see him being the one sought after because it's  the very thing we've watched him do for so many years.  And my husband who has had the pleasure of shooting pics at the Xcel for years, knows just where to go to get the best shots.

Then there is this... the first night when the players get introduced before the start of the game... the camera zooms in tight on their face, and so many of our boys said hi to Mom, and Dad, or Grandpa and Grandma- I have yet to actually hear Nolan- and yet I was told he said hi to his mom.   But watching it in person, was the best possible experience ever.

There goes our number 7! 

How cool is that to score a goal in front of a sea of orange!  The arena was packed!  The far biggest crowd our boys have ever played for!  Each game had around 19,000 fans! 

Rick climbed up to the catwalk area to shoot down for this pic... 

Here are just some of our Moorhead fans... people we hadn't seen in years came out to the game.

Another big celebration- as Moorhead goes on to win their first game against Hill- Murray!

Someone got the crowd into the wave and I was impressed with the number of times it went around.

Suddenly it seemed, it was the night of the championship game- and WE WERE PLAYING IN IT!  Its our first trip to the State High School Hockey Tournament in quite a few years,  and not only did we win our first game- but we went on to beat another Cities team to win the second game and go right on to the Championship Game!

Another of Rick's panoramic photos of the whole rink.  If I closed my eyes it was as if we were at a Wild NHL game, but when I opened them and looked around- it was filled with familiar faces.  So many surreal moments stacking up on each other.

But we were outmatched this night.  Grand Rapids just had a bit more of everything, and we couldn't get it done... we took second place, with a 6-3 loss.

It took awhile for the team to come up from the locker room.  We know these boys play with their whole hearts- and those were some pretty sad and heavy hearts that night.  And yet, the enormity of the experience wasn't lost on them either.  They're young and their fires have been fueled to be back at this tournament again.  I got some really big hugs from this kiddo, and my mother's heart couldn't be any more proud.

Plus, the biggest surprise and bonus to the whole tournament?  Were having Kristi, her son Christopher, and my friend Elizabeth come to the 2nd game, and then they brought their families to the third!  They're both life-long friends of mine, and were also former Spuds, and we had a wonderful time hanging out together at the arena.

After the championship game, the team was gathering back at our hotel.  Rick is walking in just behind them... and look at the cool reception they got! 

All up and down the floors, are Spud fans, cheering for our boys! 

I wouldn't trade the experience for anything.  But it wasn't easy on me by any means.  I spent any time outside of being at the arena, snuggled into my bed with my heating pad and blankets.  I slept long hours, too fatigued to even try and leave my room to socialize.  I had so many wonderful invites, but could not say yes to any of them.  Mid-morning the next day we packed and left for home- knowing infusion day was just around the corner.

Despite how I look, I'm still struggling physically more than I like to acknowledge.  Its easier to say, "I'm fine," because in that moment I may be... but those moments are fewer, and more time lapses between them than ever before.

But so many, are doing so much, to see me through.  With my blood pressure going so low last week, they decided to add in a bag of fluids.  And because I wanted to get to my stage iv group, I had limited time.  So my nurse was a real trooper.  She figured out how to attach the second pump to my pole.  Then we hung the fluids along with the chemo and the anti-nausea.  I was quite a sight trying to maneuver the crazy pole with the constant need to use the rest room.  But I got through... and made it to group.

Despite all the time I spend in bed, or in my recliner, or on the couch... my doorbell dings non-stop.

Like these beautiful roses that had been part of the ice show.  Judy used to bring them to my mother, who beamed from the sight of them every time.  Now its my turn, for two years Judy has brought these glorious flowers to my house and I promise you, I'm beaming too.  Its such a brightener to my days.

I have oodles of things I could share, but I struggle in keeping up.  Please know we love the visits, the food, the texts with offers of all kinds of things.  Being as weak and fatigued as I have been, it can be a little isolating.  So I welcome visits, and meals, or treats.  We're deeply grateful of how thoughtful everyone is.  I think I can definitely say, the advice to just go do something for someone with a chronic illness- is spot on.  It's really easy for me to say "I can't think of anything I need right now..."  But if you just offer and do something, its well received.  

Yesterday, I saw Dr. Panwalkar.   He walked in with a big smile on his face, in a really good mood.  Its been 6 weeks since I've seen him, and I was happy to get to talk about some of the big picture issues.

So when he mentioned with a big smile on his face, that I sure looked great- his whole demeanor broke, when I told him the truth.

"But I'm not feeling well.  I haven't in a long time.  And what I truly wonder?  Is the treatment just causing too many side effects?  Or is the cancer progressing?  Because I've been struggling with food, both throwing up, and only able to eat a few bites at times.  And my pain has not subsided in the least.  I haven't missed a dose of morphine in weeks.  And while the pain is no worse, its not showing signs of getting better."  

And he listened, and folded his arms across his chest.  He sat astutely, for a long time, thinking.  Then he started making a list...  "well here are what we have left for treatments..."  

Carboplatin, Doxil, Affinitor with Aromasin, and Ibrance.   

He points to the Carboplatin and says it only has about a 20 percent chance of even working- so its not high on his list.   I love the Affinitor and Aromasin combination- but it would take 3 months for it to work... can I tolerate "belly pain" for that long, he wonders? I wonder too...

He is open to any of the combos and ready to let me decide.  First he'd like to scan, to see what is really going on, but then he'd switch to one of these other treatments, if necessary.

And while he asks my preference and I selfishly tell him I'd love the Affinitor because its a daily pill and its like Arimidex that I did really well on... he is willing to do that... but his preference?

Is the Doxil.  Otherwise known as Adriamyacin.  Or "the red devil."  But he feels the most confident with this one.

And its this one I will choose.  

And this leads me right into telling him, that it's been 6 years that he has seen me through.  And I think I get the biggest, most heartfelt smile from him... and when we stand and he asks if there is anything else- I simply ask for a hug.  Then I get his hearty laugh, and a hug that is tight, and real,  and somehow it leads me all the way down the hall, right out the door.  Sometimes all we need is someone to walk with us, so we can take that very next step, whatever it might be.  

So I've pondered these words for a long time...  they could be about my life... or they could be about my boys... or superman.  But maybe, just like me standing at the edge of the water- we try anyways.  I may not have been able to sum any of them up with all the writing I've done- but when I get the letter below?  Well... you'll just have to read for yourself.

Colton agreed to let me share with you the letter he wrote to me for the year-end hockey banquet they held for us mom's this year.  It's officially my last year of Moorhead Youth Hockey, as Colton will move on to the high school program.  I could't attend the event,  it was chemo day- but the moms graciously included Colton and I in all the cool things they did.  One of those things was to have our boys write a letter to us about... well I don't know the words given to them... but Colton wrote this in the last 15 minutes of his Study Hall....  

Sometimes, its enough. The few lines, the whispered words, the hugs, all of those tiny moments can add up to simply enough.   

Colton, you couldn't have written it any better!  You make ME feel like the luckiest mom ever...  I know there were other moms sniffling when they got this kind of letter too- its our hockey community that helps our kids grow, while we the parents grow right alongside of them.

I'll have my PET scan on Friday.  How can I pray for you?  I have hours of solitude while waiting and I'd love to pray!  Love and blessings to everyone! 

"All the Pretty Things,"

Ever since the package with the book arrived in the mail, I've yearned to lose myself in the writing.  Coming from my friend, Linda, I simply knew I'd love the book.

So with an ache in my back, and my bed calling me early one evening a couple weeks ago,  I found myself immersed in reading from the first sentence.  I read late into the night, not wanting to read too much, yet doggedly turning page after page, longing to know the whole story all at once. 

But that ache in my back?  Somehow turned into a searing, teeth-clenching, pain.  It gripped the muscles in my lower back, with spasms of mind-numbing sensations.  

After attempts with Advil, and Tylenol, the heating pad, and then ice, plus massage from Superman failed to assuage the assault on my back I finally turned to Oxy.  With my mind numbed, my speech slow and plodding, and the pain masked by it all- days turned into nights then faded back to days- and I was lost in the haze of it all.  The book sat, beckoning me to shake my head free from the fog.  But every time I came up for air, I was mired down again with spasms rippling through my back.

I knew I would see Dr. Panwalkar soon, I just needed to get by a few more days.  Rick tried to get me to go to the ER, but I stubbornly clung to the idea I'd persevere.  My scans were clear, in my back area.  This was not cancer.

It was my week free from chemo.  It was sunny outside, and the temps rose into the 30's, making it warm for January in Minnesota.  How could I not get better?  

Somehow, I cobbled together a way of managing.  I sometimes could string together hours at a time, in which I functioned at near normal levels.  I'd dive back into the book, madly in search of the pen to highlight the phrases and paragraphs that resonated so deeply with me.  How could she know my pain?  How could she breathe such life into the brokenness I endured?  Edie's story is not mine, and yet her ability to make me feel as though I had walked in her very shoes, and her in mine, was uncanny.  

I look down at my hands, grasping the pen I used to highlight, wondering away.

At the same time, I've been knocked down, Nolan is struck down with illness too.  He fought basic cold symptoms all one week.  We use our Thieves and Lemon oils which keep him going, and some Emergen- C each day.  But its a Thursday night after hockey practice when he comes into my room,  feverish and chilled at the same time, with a bad headache.  Rick drops everything to take him into the doctorr.  Nolan's lymph nodes are swollen all around his neck, and they need to rule out Mono, and then they swab for Influenza and take blood work.  He arrives home with a positive test for Influenza and a box of Tamiflu.  He sleeps long hours, his body going from fever, back to aches and pains, then chilled and congested and miserable again.  

  

While I'm quarantined away from him, battling my own pain,  I finish Edie's book.  As I get up to put the book away, the pink pen flies out of the pages into my lap,  as my heart warms with the love that surrounds it.  

I'll never forget his sheepish smile, and the playful way his eyes beamed, even though he looked away as he handed me this pen, just days ago...

"Mom..."  Nolan says, his cheeks curl into dimples and the smile originates from somewhere deep within him.  "This was supposed to be for you at Christmas.  I made it in wood shop.  We learned how to use the lathe, but I kept getting the bottom piece too thin and it broke on me.  I had to get a new one and start over with the teacher's help." 

  I'm melting on the spot as I feel the weight of it in my hands.  It's then that it I turn it over and see the pink breast cancer ribbon.  It seals it.   It really was for me.  

I reach up to give him a hug and whisper an "I love you, " to him.  He hugs me back, all the way around, and whispers to me, I love you too, Mom."  

Days later I see Dr. Panwalkar.  We talk about the pain in my back and he examines me.  He thinks for a long time, and then says I should try a muscle relaxer for awhile.  He warns me it'll make me sleepy and more foggy in the head perhaps, but should help release those muscle spasms.  He also says he wants to see me again in a few weeks, and we'll also talk about scans soon.  The last little tidbit is that while my blood work shows low counts- he is still going ahead with treatment- because the good news is, my tumor markers have dropped down to just above normal.  

~all shall be well~

Thank you to all who have reached out to me!  It humbles me so to know you come in search of me when I'm quiet for too long.  Your prayers, cards, emails and texts, do much to lift my spirits.  So grateful! Love to you all~ 

One little word... 2017

It probably started with the coffee stain.  It repeatedly caught my eye as I trudged up and down the arena steps.  Somehow a sticky dark substance had spilled, and run and trickled into a little pool, in the exact shape of a heart.  I pondered if it was picture worthy?  But I simply smiled and huffed my way past each time, the image seared in my mind.  It's funny how these little tiny things, can somehow have such a big impact, if you let them.  But let me back up a couple of weeks,  and explain a bit more...

I heard someone say the word normal can only be found as a setting on your washing machine.  Touche.  Yet I was determined this Christmas to come as close to "normal" for our family as I could. But the abundance of blessings we felt from friends and family, was beyond the confines of that simple word.  I'm not even sure when it began? Just one thing- which led to another thing...

For the longest time, the surprise arrival of this tree ornament was a mystery to us.  But the delight of someone making a family heirloom piece we can put on our tree each year, is treasured by me.  It made perfect sense when our friend Ria mentioned it to me- she is after all the vision behind the photos that continue to make my heart soar.  Thank you, Ria.

And when the hockey loving sons, receive cool hats and t-shirts from Teags & Ry, how can we not feel special?  Their product line continues to expand in such fun and unique ways!  You'll have to just click the link to see for yourself.  Thanks Alyse and Jayme!  

With boxes and cards arriving continuously,  the magic of the season grew daily.  I treasure this handmade clock from my sweet friend Peggy in Missouri.  A vintage card carefully decoupaged on this wooden piece with my favorite shade of blue in the background.  It's sitting next to my computer desk so I can see it daily.  We loved the goodies you sent us- so thankful Peggy!

Eileen, in California, sends us this beloved vintage hockey calendar each year.  It's so authentic, it makes you want to walk right into the picture and lace up your skates.  So touched Eileen- thank you!

The hockey stick and mask ornament have been on our tree for many years- but the surprise of the orange spud ornament was just perfect.  Thank you, Heidi!  The boys love it! 

Linda's box arrived with this sleigh wrapped in plastic, and a bottle of sparkling cider that happens to be Colton's favorite.  I tucked the sleigh under the tree to open for Christmas.  It was filled with goodies and fun things.  I miss my mom and the way she would make Christmas so special for us- and Linda helps me feel like my mom is right there with us after all.  To the moon and back, Linda.

From the 10 dozen cookies we received from a cookie exchange- so yummy and fun to eat- to the gift cards for our kids- beyond touched by everyone's thoughtfulness- we truly had a meaningful and memorable Christmas.  

Nolan's been living in a story that I could write about for days.   But he is 16, and placing his trust and confidence in his mom.  So when the young man of few words says he "feels like he needs to go to church- to feel better?"  Its all the gift I really need from him.  He raises his candle high and I hear his voice ring out... and I just think, "Let it shine, Nolan.  Always remember to seek the glow of the light when you feel alone in the dark." 

Even Santa celebrated the birth of baby Jesus on Christmas Eve.  Oh my heart.

The tree and I seem to have shrunk over the years, as the "3" boys continue to grow.  But those smiles simply say, we had a joyful Christmas with so many friends and family with us in spirit and some in person, as well.

With a couple of days to recover... we were soon off on a trip. 

It wouldn't be Christmas if it weren't for a hockey holiday tournament in St. Louis Park.  I was thrilled with feeling well enough to travel with Rick for 3 days, to watch Nolan play.

Thankfully, my hidden secret was this espresso coffee machine in the hotel.  It was truly like a coffee house version of a cuppa joe and gave me the added boost of energy to engage each day.

I relished the sun and warmth not so typical for late December in Minnesota.

Despite using a handicapped sticker for parking, I was struggling for air by the time I walked inside the arena on some days.  Standing at the boards to watch leaves me with cramps in my toes and legs later in the evening, so I climb the stairs to sit.  Slowing if I need to, but always pushing through.  Just keep going, I tell myself.  Nolan and I share this feeling of straddling the line between two worlds, wondering where we fit?  Is he Junior Varsity?  Is he Varsity?  All he can do is keep showing up, just like me.  

On our last day, Nolan texts me that he'll play Varsity his last day, due to an injury by one of his teammates.  Its always bittersweet.  

 I pull my suitcase out to the car, and can't seem to breathe deeply for a long time afterwards.  So I sit on the nearest bench in the rink, conceding, I need just a little help.  And our hockey community rises up to offer water, and to walk with me when I'm ready.  

I climb the stairs, and as I stop to gather my last bit of resolve- there it is again.  The coffee stain shaped like a heart, sitting by the very step I've stopped to rest.  I've been drawn to it yet again.  So onward I go.

And somehow Nolan is feeling it too.  He skates fast, and gets knocked down along the board drawing a checking from behind penalty for the other team.  But he bounces right up.  Onward he goes too, strong and determined.

Then this...  the next move he goes backhand and sinks the puck into the net!  

His teammates celebrate with him, as my heart soars.  We go on to win the game. 

It's sealed when he comes out of the locker room with the hard hat on.  The goalie, his friend Lance, awarded it to him.  It's a tiny moment, with a big impact that's helped propel us forward yet again.

We're home again, about to begin "chemo nesting."  I'll have labs drawn early Tuesday morning, and a visit with a nurse practitioner, then infusion on Tuesday.  

But I linger here, in my new quiet computer space.  What should my new word be?   What has been made abundantly clear to me,  at the "heart" of everything, just like that coffee stain... is one thing.  So why not just lead with my heart?

As we head off into the new year of 2017, my one little word is love.