Friday, April 21, 2017

Ob la di... life goes on

After I had my PET scan on a Friday, it was early the next week I received a call from Dr. Panwalkar.    Progression, was the gist of the call, my cancer had progressed, some areas worse than others- and one area in my right lung actually showed some improvement.  But it was evident I needed to change treatment, and we had spent ample time deciding which one I would do.  

I'll get to that in just a bit...

Because really?  It isn't where my focus lies these days.  I've detached a bit.  I simply don't know, can't know- do I even want to know(?) what lies ahead?  I have eyes for the here.  For the now, and the nearly now... just now.  

So what do you do with your time?  Well...

I cooked a meal.  We've received way more meals than I can count- every one of them leaving me with the desire to try some new recipes and up my game a little.  So I cooked, and the boys loved it.  Even though it took my whole day, and we devoured it in minutes.  I was so stinkin proud of that one meal.  Each day has somehow flown by, and I do little things, which feel so big, when it takes so much for me to do them.

And all of you?  Have found the most unique and clever ways to lift our spirits.

Like just last night...

Was that the doorbell?  A knock on the door?  We heard something in the front of the house...  But the fireplace fan was loud in the back of the house and the Penguins were playing- and I was out of bed sitting in the midst of the boys- watching with them.

So I didn't make it to the door on time...

But when I peeked outside... my heart stopped when I opened the door and found this!!  Ria who took all these photos of us- made us this beautiful canvas.  We've had a photo hook, on the wall, empty for the longest time... waiting it seems for this.  I moved it to get a picture of it...

As soon as the boys saw it they laughed and started the "Do you remember?" stories behind all the photos.  Remember how the marshmallows were huge!  And Colton was giddy over making s'mores.  We all loved checking out the grounds of Rustic Oaks.  It was such a great night...  and Ria captured it all so well.  I feel especially honored, when someone uses their talents, to graciously bestow such a gift on us.  Thank you, Ria!  These all breathe such renewed life into me, I can barely describe it.

I awoke to a special treat Saturday morning.  The Narum family brought us home made cinnamon rolls!  They were hot and delicious and devoured instantly.  I felt so touched they took the time to bless us with such a yummy gift!  Thank you Denette and Bill!  

We had a pretty low-key Easter.  As much as I longed to go to church and have a simple meal later at home, Grandpa Jim needed Rick and the boys at the lake.  He sold his lake home in Park Rapids and has limited time to finish clearing out all of the rest of the stuff in the garages.  

I was too weak to go to the lake, and to tired to even get myself to church, so I spent a quiet day at home.  It was just a few days past my Mother's 2nd year anniversary of her going to her heavenly home, and I was pretty melancholy.  I had even wanted to get some Easter things for the boys- who just didn't want anything.  I think I realized I wanted it more for myself, than anything.  I was so happy to have the boys all return home that night...

It was the very next day when the doorbell rang again.  It was a box... and the return address said Washington... and my heart started to beat just a little faster, and the tears finally fell.  If Linda only knew how much she "mothers me," just when I seem to need it most.  How did she so adequately send me so many of my favorite things?  Colton too- danced his victory dance upon seeing the sparkling cider.  Words of hope for me to hear, and to read with my eyes, and treats to taste- life-giving for sure.  

Thank you, Linda- its the sort of thing both my mom, and Rick's mom would have done for us- we miss them so- and you somehow gave us just the light we needed!  You're pure gift to me- and I treasure you so!

My friend Bonnie sent this home with Nolan and I clung to that message for days.  I had truly been anxious and nervous about starting another new chemo and I loved the message that rang so true in this scripture.  So thankful Bonnie!

The flowers came with a scrumptious meal- and while the enchiladas were devoured in short order?  The flowers are still going strong!  I will always love having fresh flowers around.  Thank you, Steph- you always get it just right!! 

When my friend Roxane came to visit, she gifted me with both chia tea, and this beautiful rosary!  I have always wanted to know how to pray the rosary, and this helps so much.  I have the rosary near my desk and love the weight of it in my hands, and seeing it glisten when the sunlight hits it just right.  So thankful for your thoughtfulness, Roxane!  

So here I am last week.  Having my first round of "red."  I was so nervous, and yet, somehow, through the grace of God, it went so smoothly.  I had steroids, and then the chemo.  I spent nearly the next 3 days in a jittery, high-energy, state of being.  But I didn't feel too sick, or too anything really.  A little more pain when I was maybe a little too ambitious with some cleaning... but overall, not too bad... until...

My hair fell out!  So fast!  It truly went from being on the thin side, to clumps falling everywhere.  And once again, God's grace rained down, as I just so happened to have a hair appointment scheduled for yesterday.  So sweet Amanda chopped my hair.  And shaved it in places.  And carefully left some hair in places where it may grow in?  Or it may all continue to fall out, as it is still doing.

So meet my new hairpiece!  I was so truly uplifted again, to know I had something to go to.  It fit perfectly, and simply reminds me of the hair I had once upon a time.  Its so soft, and healthy!  To all the wonderful women who contributed to the purchase of this beautiful piece of "real" hair,  I'm humbled beyond words.  Since Stella has been retired, I need a new name for this piece.  Ideas anyone?

I could literally go on... with pictures of the beautiful cards sent.  The gorgeous daily devotional that came in the mail.  The lovely visits I've had from so many...  so many things... 

I have a hard time truly understanding all of this... I'm keeping it pretty simple...

A memory came up on Facebook from after I was first diagnosed... one night a bunch of hockey moms had gathered, in my honor, and somehow we ended up doing karaoke at a local pub...  I had used this phrase... so we sang the song that night.  And its stayed with me ever since... 

Ob La Di Ob La Da... life goes on...

With gratitude and love to you all... 

Wednesday, April 5, 2017

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! 

When you get lucky

When you get lucky

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