Friday, September 16, 2016

so much love





I feel so loved right now... just look what love can do! 

I thought I was going to Vi to have Stella, my poor wig, cut and shaped again, on Wednesday.  I simply sat down in the chair and pulled crumpled Stella out of my hockey bag.  

That's when my friend Sue, came to me and let me in on a little secret, in the video below!




video


Did you see that?  Could you hear what she said?

I'll rephrase it here- essentially, Stella is going into retirement.  My sweet friend, Sue, had an amazing idea.  She shared the idea with a beautiful group of women- hockey moms, football moms, friends, neighbors, survivors, etc.  So they all came together and contributed funds to the purchase of a new wig- for me!  And friends, can I tell you how spoiled I feel?  Because this beautiful hair piece?  Is made with REAL hair!  Its soft and light on my head and such a pretty color!  I'm beaming.  I was so overwhelmed with the awe and surprise of it!  I never dreamt I'd have a piece made with real hair!!  This hair I can wash, and blow dry, and curl and style and spray to my heart's content! 



I think the only thing that kept me from sliding into the "ugly" cry, was simply the pain meds dulling my senses just enough to keep me pretty even keeled.  But that smile says everything.  

Vi is adding a few highlights in the front for some added dimension, and on Monday we'll go in for the final fitting.  I could truly start wearing it now, if I wanted.  


I don't know how, truly, to begin to say thank you.  These acts of kindness, of pure generosity- from a community that has seen me through, time after time.  My gratitude fills and spills, over and over again. I am one blessed woman.  

Thank you Sue for all of your brainstorming, and organizing, and the time you take to help me, and spend time with me, and truly uplift me.   A friend, Cheryl, said "Sue has such a servant's heart."  I couldn't say it any better.  And then to have all the wonderful women step up and so generously give of themselves.  Thank you to everyone! 

(Sue, on the right with her daughter, Julia.)

I sent a quick note to Dr. Panwalkar's nurse the other day for a new pain med script.  It was Dr. Panwalkar who called me back, within a few minutes.  His concern and compassion crowded every word.  He bumped the dosage up, and gave me enough pain meds to see me through.

It may take some steady pain meds to help ease the burden a bit, but I am more convinced than ever that love will ultimately see me through.  Love is what beats cancer, ever single time.  And you all just gave me a big dose of love! 





Wednesday, September 14, 2016

Brutiful...




It just comes in real.  It's one of those hard places, when you can't logically figure out where it came from, or when it all started.  I just know last week, a pain was searing my shoulder.  And I couldn't stop it.  

I take Tylenol and soak in a hot bath.  I prop my bed up to a reclining position and use my heating pad- on high.  Still no end to the dull roar.  I attempt to "choose joy" literally to embrace the heat and heal my back...




At times the pain subsides and I pray it's easing up.  But then its ripping through my back again, radiating everywhere.

My scans were fine in this area.  I can cross this out of my head.  And treatment was two weeks ago- shouldn't be side effects- not like this.  How do I even call the doctor?  I didn't fall.  I have no infection or fever.  My counts are good.  What is there to even check?

I look through my bin of meds, with the Oxycodone of long ago, singing out to me, "pick me, pick me."  



Oh how I despise you.  Oh how I love you.

I slam the drawer shut again, thinking, I'll just grit my teeth and bare it.  I promise Rick if it isn't better by the next morning, we'll call in to the doctor.

I take my sleeping meds and off to dreamland I go.

It's bearable the next morning and I quietly switch back to advil and hope.  Why is this even happening? 

But just hours later, I go to toss the ball for Crosby and there it is again... searing, blazing, all through the corners of my back- have you no mercy?

I crumple into bed, angry, spent, hurt.  

Oh how my mind narrows.  Throb, throb, hurt.

Oxy, are you my only hope right now?

I do it. Its getting late.  I take 1 old expired 5mg pill.  I sneak my eyes past the expiration date of 2013.  Its good enough for now.

Hours later, my mind is dulled, but the pain is razor sharp.  I'm so sensitive to pain meds, if this isn't helping?  What next? I don't want to go to the er.  What can I do?  

Surrender, and embrace it, the real and the hard.

Reluctantly we call the on-call Onc.  

But I'm shaking my head, because it plays out just as I thought. 

Despite all the explanations... he says...

"Come in." 


I don't want to come in, therefor he can not help me over the phone.

We ask how many more pills I can take of the expired stuff?  More if I need to.  Just take the old stuff.

So I do.  I take more, and succumb to sweet sleep.  On and off over the next few days, I take the Oxy when needed.

 I see Dr. Panwalkar in a few days and I know I'll be seen, and heard and helped.  


In the midst of it all, it's just a simple buzz on my phone that I've laid on the table far from where I rest.  But when I see the name "Ria," and see the attached files, I can't help but sit down at the computer and look...  she has beautifully edited all of the photos from our shoot with her.  

When life yields the most brutal, sometimes smack dab in the middle of it, is the most beautiful.  Ria's timing was impeccable.  She's gifted us with more than she can ever fully know. I sit and cry through photo after photo- reliving all the moments.  The sunshine.  The laughter of the boys and their silly antics. The beauty of God's creation.  The love shown.  The sharpness in my shoulder magnifies my ability to see beauty and abundance.  



I truly understand Glennon's idea.  Its brutal.   It's beautiful.  And its real, and hard, and well.  


I'm sharing just a handful of photos, with hopes to come back and share more soon... 


~all shall be well~
































Friday, September 2, 2016

Somehow





I'm cleaning.  It's the thing I always turn to when I try to restore order in my world.  So I'm sorting, cleansing, throwing.  On my knees, then reaching far above my head.  Scrubbing, harder and harder.  If I use all my might?  All my tough girl fight?  Will I scrub all this cancer away?  I barely sit down.  I work until my back aches, and my arm swells, and my breathing is jagged and sharp.  Till I have no more.  Tears creep down my cheeks, as Crosby leans in to lick them away.  Somehow I'll clean it all away.  

Dr. Panwalkar was all business when he walked in the door of exam room 7 on Tuesday.  He smiled and shook my hand firmly, then sat down right away to begin looking at scans.  He still seemed to be in the midst of deciding what to do.

As he talked his way through the scan, pointing out where in my body "progression," had occurred, he kept saying,  "I'm not sure I agree."  I just kept sitting, waiting for the verdict.  

He finally turned the screen, and it wasn't the splashes of yellow, glowing from the screen that unsettled me.  It was the words, oh those awful words.   The report from the radiologist, was so hard to stomach, all I could do was avert my eyes, I simply didn't want to see, didn't need to know.  Yellow splashes, in my lungs, down through my abdominal cavity kept jumping out at me.

But Dr. Panwalkar is still shaking his head, not in agreement with the words.  Based on what he sees in the scans?  Those aren't the words he would choose. Its in these "hard" moments I need his sturdiness and his knowing,  the most.   Somehow he always "sees" me in these moments.  

So he reveals his plan... one I couldn't have seen coming... as sometimes happens.  He changes his mind in the moment- flashes of brilliance or thoughts of another way that suddenly occur to him.   His demeanor changes and he simply says, "How would you feel about trying TDM1 again?"  

I start to see where he is going with this.  I've had TDM1 before and it cleared out my liver mets, and kept me stable for almost a year.  Its been 4 years since I've had it.  

"I know nausea was a problem, but we'll give you something to help with that," he says.

"We'll scan again in 9 weeks, and then go back to aggressive chemo, if it hasn't worked.  Weekly Taxotere again. What do you think?"

I nod my head up and down.  

He fills out the new consent form and tells me to take it to the infusion center.  

Somehow he makes me able to stay in this moment with him.   We even talk about his family trip, and he smiles so big when he says his 6 year old walked all over the city they had visited, and its good to see pride in a son, beaming forth from a Dad.   Its always a brief moment that he steps out of "doctor" mode, and it feels good to sit side by side with him. 

He walks me to infusion and says I may have to wait awhile for infusion, as they seek insurance approval for the TDM1.  "See you in 3 weeks!"  He saunters off.

So I've barely sat down and I look up to see Annie coming.  She hugs me big and says, "Getting ready for Taxotere?"  I smile as I tell her he's already changed his mind and tell her about the TDM1. Somehow, she knows when I'll be at the clinic and then comes to find me at some point.  She is compassion and warmth, and whispers she'll say a prayer that approval comes quickly.

And let me tell you- I barely sit down- and they tell me I'm approved and my room is ready.  How's that for answered prayer?  Insurance approval is huge, and that Roger Maris has the drug available is equally as huge. 




It was just the week prior that I happened to run into Alesha, one of the infusion nurses, and she took the time to stop and ask how I was doing.  I hadn't seen her in awhile.  But we said maybe sometime soon I'd see her again?

So I settle into my chair and look up to see, who was assigned to me this Tuesday?  It's Alesha!  We're both surprised.   Its crazy how blessed I feel, in the midst of the mess of it all.  When I pray for "strength" to get though all of this, somehow He provides for me.  Sending me all the right people to see me through.  

Infusion lasts 3 hours for the loading dose.  I use my time to journal my gratitude which fills page after page in my book.   I'm done in time to meet with my stage iv, Fourward support group.  It's very humbling to be surrounded by woman, who are so likely going to say, "me too," whenever we share about our latest news.  I'm humbled and honored all at once to call them friends.

Its a lonnngggg day.  As I wait for a ride home, I'm surprised to see it's Nolan who drives up to get me. The tears still lie just below the surface, and I keep them in check so my son doesn't have to see.  Somehow, its simply enough that at 16, he drives to Roger Maris to pick his mom up from her chemo.  


The rest of the week I'm nauseous.  Achy.  Emotionally wrung out.  Summer is slipping through my fingers as I clean through my desk top photos.  Glorious sun shining in so many.  Plus nights out with several friends.  And a sprinkling of some good books.  Somehow the light always finds a way to shine through the dark and hard.  Somehow...













Wednesday, August 24, 2016

200 times...









I should have known...

As I have prepared  for our family photoshoot with Ria, I had so many concerns flooding my head.  How will I "tame" my wild hair?  Its become curly with cowlicks popping up, and can I somehow manage to make it look, "photo worthy?"  Can I find a shirt that fits my swollen arm, while covering my port? But please let it look cute!  Can I draw in those eyebrows that are just making a reappearance?  The eyelashes... or where for art thou eyelashes?  Can I?  A million times over, can I?


Even the day of the shoot I wonder...

Will the boys cooperate?  They don't like wearing jeans... and did I match their clothes ok?  Will Rick be able to carve out some time from his deadline? Will we make it in one piece?  


Suddenly, it's photo day.  I peek under the shade early Monday morning and the sun glints through the blue sky... and we're off.  Its a day chock full of preparing for all kinds of things.  But underneath, I still wonder, can I?  

The time draws near for us to leave... but Rick's shirt has creases and he needs to iron.  And Colton's jeans are too loose, and where is that belt?  And my hair?  Oh goodness, it has a mind of its own!  


But suddenly we're pulling up... and it's time!  And as I step out into the golden sunshine highlighting the lush green, the red hues of the rustic barn, the bursts of color from all the wild flowers...  I remember...

"It's not about me..."  


This life I live?  Really, God's glory shone so brightly all around me I knew that even if I can't...  HE can.  His way, not mine.  His will, not mine.  And when I let go?

Look how HE shows up!

He puts my little family, in the uber talented hands of Miss Ria, and then shines a light down across all of his creation and we get to humbly stand in the midst of it. Really?  The abundance overwhelms and my gratitude explodes. 

And then YOU, all show up when Ria posts the photo from above on my Facebook page and says this:


"As soon as I clicked the shutter I knew this would be my favorite shot of the night. One of the things I love most about the gift of photography is the ability to see a "feeling", and I hope you can both see and FEEL love when you look at this."


And that photo gets liked, and loved over 200 times, and I'm deeply humbled by the sweetest of words and encouragement left for me.  It's 200 times 200 times 200... multiplying love to infinity. 


I take a few quick photos before we leave- the sun set is spectacular, just like the last time we were so blessed to shoot pictures with Ria.  God's hand is clearly showing through all of this.  


So this is what I'll take with me tomorrow at 1pm, to the MRI tube, and the sedation nurse.  This little piece of "heaven," and my prayer list.  

Can I add you to my list? How can I pray for you?  Please leave a note in the comments below and as I prepare both tomorrow for the brain MRI and Friday for a PET scan, I'll pray.   

I'll see Dr. Panwalkar next week and come back to share scan results soon.

And more photos to come... 










Thursday, August 4, 2016

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! 






















When you get lucky

When you get lucky

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