Monday, July 21, 2014

the cutest...


You'd think he was in a Halloween costume, the way he dons his "turnouts," in record time, practicing, in case there is a fire.  But its clear, this firefighter, my nephew, is not playing.  He may be 4 years old, but Ethan longs to be a firefighter and protect people when he grows up.

So when he flew to Minnesota with his Dad, (Rick's brother, Matt), Ethan walked into our house fully decked out in his turnouts.  Plus one other surprise.


His Dad promised him a trip to a local fire station.  Ethan has gone before and usually is given some crayons, a coloring book, and maybe some badge stickers.  

But this day, would be his lucky day.  The fireman said he had something for Ethan… and came out with this authentic, and real firemen's helmet!  


It has a dial in the back that allowed us to get it to a size that rests comfortably on his little head.  Wow, is that thing heavy!  But Ethan lifts it with such pride, he was literally beaming with that hat.  We rarely saw him without when given the right occasions to wear it.


Here he is with his turnouts, gloves, boots, and that hat that he hoists to his head, again and again.  "Practicing," he'll tell you, just like firefighters do.



These two cousins, were instant buds.  Colton did a great job of keeping up with a 4 year old who was creative and active and simply a joy to be around.  


Our next day with Ethan and Matt, we took the boat out to the lake.  While I sat on the beach, the rest went out fishing.


Suddenly, my phone buzzed, and this image came through.  Nolan had snagged a muskie, a BIG muskie, by the looks of the tail end diving back down into the water.  But alas, the size of the fish, Nolan's eagerness to catch it, and his meager 6 lb line was not enough to land the fish.  It sure has made a good "fish tale," out of that fish "tail."  


After a pizza break at Zorbaz, the boys left to go home with Matt and Ethan, while Rick and I took the boat back across the lake.


The sand bar was filled with pontoons, music and quite the party atmosphere.


But the wind had come up, and the water was getting choppy.




When the white caps on the top of the waves started to appear, we headed for the boat landing and headed for home.  Our next adventure was just around the corner...





The next morning we packed up the car, and headed to Silver Lake Recreation Area for a Westra Family Reunion.  It was a beautiful day.  


We just needed Ethan's older sister, Mackenzie, and his little brother Bennett to join us for all the Westra cousins to be together.  



One of the fun ideas the Westra Family does to raise money to pay for the Shelter, is hold an auction.  Each family is asked to bring an item to be auctioned off.  

There were small lap quilts, embroidered dish towels, home made jelly, bread, and all kinds of fun and unique items.  


I loved these towels- I have an entire quilt my Grandma Held made for my bed out of these prairie women.  I was so happy to win!  I also got some home made apple butter and bread.


And then there was Colton.  It wasn't the hot wheels cars he wanted.  Or the water throwers.  Or the soccer ball.  No.

My precious, adorable, son?

Wanted this…



yes- a skunk skin!  A real one...

Ew… 

And so for 18 of his own dollars- he walked away with his newest "stuffed animal."  

I can barely stand to look at it, let  alone want to walk in his room where it is so artfully displayed.  




**************************


If I'm being honest… it was an emotionally exhausting week last week.  For so many reasons, more than I can possibly say right now. I feel a post in the making however, and soon hope to come share more. 

I went with my mother to see her liver specialist.  Her latest ultrasound shows that her kidney's have begun to atrophy, which is part of her disease progression.  Her creatinine levels are high too, also in keeping with her kidneys and their present condition.  Her blood sugars are all over the place. 

And yet, her doctor is a ray of hope- he smiles and encourages, acknowledging she looks good, despite some of the ongoing health concerns she faces.


She has been working so hard to not just maintain, but to improve herself.  She has worked to lose all the excess fluid she carried for so long.  She dropped over 25 lbs of fluid.  Her doctor was impressed.  And when she broached the subject of traveling to see family, her doctor said this fall was the time for her to do that.  

He looks me in the eyes and tells me now is the time for mom to do that.  

I swallow hard, and smile big, and nod, understanding what he is telling me.  

As mom goes to say goodbye she tells him, "Every morning I just plan for today, and hope for tomorrow.  Nothing more I can really do."  

Such wisdom, in the smallest, everyday exchange between a doctor and a patient, as witnessed by her very humbled daughter.














Wednesday, July 16, 2014

so, its my birthday...




Its one of my favorite photos.  I am out at my father's family farm where he grew up.  For all I know I am sitting in a stroller once used for him.  And I am wearing some blues shorts and reaching for the peonies and my love of those two things hasn't changed.



I arrived early yesterday at Roger Maris, anxious to see Dr. Panwalkar.

He strode into the room, shook hands with a big smile and sat down right away.  "Lets look at your CT scan from yesterday."

As he matches the one from January next to the one from yesterday, I see the changes before he mentions them.

There are what look like white "clouds" billowing around several places in the lung. He said to him if he didn't know I had radiation, it would look like pneumonia.  But he felt it was scarring from the radiation instead.  "How is your breathing?  How do you feel?" 

 "Good, I smiled, I still feel good."

"There is also a pocked of fluid under your right arm that looks concerning."  He is more serious when he says this.  And is letting it sink in.

But my mind leaps forward quickly and says "Do you think its a seroma from my recent breast surgery on that side?" (a seroma is another term for pocket of fluid) 


He thinks for a moment, and says, "yes, actually that makes sense, and I am not even worried about it now."  He smiles again, and seems relieved. 


So then we try to ascertain what the three areas of lung mets look like, but here is where its kind of tricky.  One area is under a white cloud… so we can't tell the status.  Dr. P doesn't even try to explain something that can't be seen to know.  

The other one is also not appearing in any of the slices we try to go through.  And the white spaces that are normal, and the ones that aren't in the lungs, look so similar to me, I can't tell them apart and have to rely on the doctors to distinguish the difference.

But finally we get to one we can see, and it almost looks slightly smaller.  So we go to the slice just above and its not even there, nor the slice below it.  So we can conclude that this tumor is a little smaller than it once was.  

Overall, Dr. P concludes, my lung mets are stable.


Stable Mable, pops into my mind right away and feels like a complete gift to me.

I can hold off on radiating my lungs again and causing further lung damage. 

I can keep staying on my Arimidex that hasn't caused me a lot of side effects.  

In two months I will have a full PET scan to see how the rest of my body looks.  We do have to think about my ovaries that had cancer on them, and if the cancer could have spread from there.

But for now, I am faithfully leaning into, stable.  

So Dr. P asks about our summer and tells me about his trip to Alaska.  He lights up when talking about it, and its refreshing to see him come so alive when he talks about travel with his family.  

He examines me and is surprised when I show him my new mastectomy incision.  He says its way more extensive than he thought, but looks really good.

We laugh as my heart thumps away, rather fast, but truly we know its my anxious state.  My body will always be a little bit in fight or flight mode after that stage iv bombshell landed on me 3 years ago.  

But when Dr. P realizes its been 3 years, he pauses and joy fills his face.  "That is lovely to hear. 3 years."  And he shakes his head almost in disbelief.  I so get that.  Me too, I think.  

We conclude with my list of questions for him, that he so patiently answers for me.  Its nearing infusion time and he has been with me almost an hour. 

We leave the exam room and as I gather my bags and go to sit in the waiting room at the infusion center, he pats my back and smiles again.  He nods his head as I say thank you, and off he goes.  

I get called back to infusion right away.  My nurse is Alesha whom I've had many times before.  She wishes me an early happy birthday, and then quietly shares that it is her birthday this day.

We both giggle when my bag of Herceptin comes back from the pharmacy covered in Birthday stickers. And she offers to share part of her Birthday cookie with me. 



But the nausea will settle in soon.  

So I pack up my bags and go outside to sit in the sun and wait for Superman to come pick me up.

~All shall be well~ 




















Tuesday, July 15, 2014

soon...


We had such a fun weekend with these 3 boys!  I'll be back soon to share more.   Ethan, my nephew, was beyond adorable and wait til you see what his heart's desire is at the ripe old age of 4…

But for now, after a long morning of tests yesterday, I'm off to see Dr. Panwalkar and find out how those lung mets are doing along with my other test results, then off to chemo infusion.  Back soon… 

Saturday, July 12, 2014

Happy 17th Anniversary!



Dear Superman,

In twenty-eight years of knowing you I can't put my finger on when it began.  Maybe it was the hour and 1/2 phone call you made to me when I was in Paris, and we weren't technically dating at the time. Or it might be due to the fact that on the really cold days, like -42, you'd come pick me up for school, knowing I'd have to walk in the cold if you didn't. Yeah- still not dating during that time.

But I think we already knew.  We weren't entirely ready.  But we knew.

It might have started back in high school, when we went on the church trip to New York City. We stood at the top of the World Trade Center taking night photos of the cars down below. Neither one of us talked and yet we were completely comfortable not filling up the space with needless words.

Perhaps its all the treats you bring me now, just because you know I had a REALLY LONG DAY. Or its how much I love the way you say, we'll find a way, don't worry.  

It could certainly be because of all the spontaneity. Like when you say, Really, Toronto, Canada is not too far to drive to in our little Toyota Prius.   And I discover its not really too far.  Or the time when you first got your job in Idaho and were getting ready to move.  But you said "Stay in graduate school.  We can weather a 9 month separation."  Yeah, we did that too.  


It certainly could be the day you said Idaho isn't working for us anymore.  Lets quit our jobs, buy a small blue house and move back to Minnesota to be closer to our family.  Maybe I'll try photography and see if I can make a go of that.  Um hm.  That's what we did.  It could have been that day.

And the worst day.  The day I called, sobbing, saying this time its not cysts in my breast.  I was wrong.  Its the worst imaginable and I don't know how I am going to do breast cancer.  I'm sorry.  And you say, I'll be right there.  We'll just do it, together, and everything will be okay.

I guess thats the thing, really.  Its not any one of these, but its all of them.  Its how we've woven this tapestry of us.  Through the times we are at our best, and the many more times when we are broken, tired, or weak.  It hasn't mattered. Apart, was just never really meant for us for very long.  I can't think of a time in my life, when it ever really will be either.  

So at some point its just been together.  This story of us.  Its about the 17 years of marriage, the 28 years of knowing each other, the 14 years of Nolan, plus the 12 years of  Colton.  Its the forever I hope to know you, to love you, be with you, and weave together the rest of the story of our life.  

Friday, July 11, 2014

uncovering grace


One of the sayings in hockey that we've always upheld is this:

"Hard work beats talent when talent doesn't work hard."

If there is one thing I can tell you about Nolan right now, he is a hard worker!  

He is spending his summer, skating, working out at the rink with Joel- doing FP3, and then coming home on his own and stick handling, and shooting pucks.  Every day.

We aren't asking him to.

He is.

We aren't telling him to.

He is.

When it rains.

He is.

When its hot.

He is.

He is… one driven kid.

His big epiphany?

Working hard = fun.  

Up and down the driveway he goes, faster and more precise each time.  



And when you don't see him with a stick in his hand?  Its usually because he has a golf club in his hand instead.  His passion for golf is just as evident.

He plays in the FM Junior tour and plays in tournaments each week around town.  He has been close  to placing in the top 3 a couple of times.

And then I got the call the day before.  He had played in a Minnesota Jr. PGA tournament in Perham, and he won first place!  

Yesterday, he played in town again, and came home with the plaque for a 2nd place finish.  Several of our Moorhead boys have consistently placed in the top 3 this summer, and we're so proud of all those boys!  




I spent the beautifully sunny morning, yesterday, writing thank you notes.  Over the past couple of weeks, these lovely and thoughtful gifts have come through my door.  

My friend Kristin brought us a tasty meal two nights ago and the cute plaque below…

and I could go on and list each and every thing.

But, I'm always worried I will unintentionally forget to acknowledge someone… 

So please just know I am so thankful to all of you! 

Honestly, its felt like my birthday- way before next Wednesday.





One more thing- this friend did something so clever.  She held a Thirty-One bag party in my honor and then donated the funds to me.  Thanks Karla and Morgan!  Plus the bag?  Too cute!  



I also always hope the tiniest seed is planted.  That we all see- that the smallest acknowledgement- a note, a card, a gift, a meal, etc. can do so much to lift a spirit.  To refocus our thoughts on what is good, and well, and shed some light on the grace that exists in our days.  







Tuesday, July 8, 2014

She sits waiting...



I carry you with me into the world, 
into the smell of rain 
and; the words that dance between people 
and; for me, it will always be this way, 
walking in the light, 
remembering being alive together. ~ Brain Andreas


Its been 4 years Dad, since you left your earthly home for your heavenly one, on the 5th of July, in 2010. 



She sits on the end of the dock.  Waiting.  She listens for the sound of running feet.  There was a time when she would have been 4 or 5, and the rest of the kids, her cousins, were teenagers.  They would have been shouting, splashing, chasing each other, on another lake.  Two would have ganged up on one, and someone would have ended up in the lake with clothes on.  An auntie would have been yelling for them to be sure it wasn't the little girl!  But she knew how to swim already and couldn't wait for it to be her turn to be thrown in.  



She sits waiting.  With memories of her Dad, limping down these steps, tied to an oxygen tank and cannula's forcing air into his failing body.  But his spirit - summer strong- willing himself to get in the boat and fish.  No complaining- never too hot, too cold, too windy.  Maybe he'd catch a few, maybe he wouldn't.  But he'd go willingly, any chance he'd get.  



She stands waiting.  For nieces, who came with her brother and his wife, every 4th of July, for years.  It brought her family together and bolstered her spirit.  Her kids, and their kids, cousins.  They too, would want to chase, racing into the water, making summer memories.  She wades in to the water, praying they decide to come back, praying she'll be able to hold on until they do. 



She sits waiting.  Remembering Rick's mom, Carole, who left this earthly home so suddenly, almost two years ago now. Jim even finds red, white, and blue stars and flags to sprinkle across the tablecloth on the delicious meal he prepares, the kids smiling, remembering its how Grandma would have decorated too.


She sits waiting… for all the pieces of her to come back...



Until she can't wait anymore.  She's emptied- the sad, the broken, the heavy.  She needs not sit any longer.  So she makes her way up the stairs, "walking in the light, remembering being alive together. "  

And begins to fill, with light, joy, and peace.  

His mercies- ever present- ever tender.












Rick's amazing hummingbird photos.







Dr. Antoniuk removed the tape from my incision.  Its free of everything but layers of stitches that will slowly dissolve.  I still have to be careful not to dislodge or loosen anything in that chest wall.  

But it looks so good… so good. 

Family reunion and a visit from Rick's brother coming next.

Scans next week, Dr. P, infusion, Dr. Foster and a doctor appointment for my mom… and a side of cake… cause its also my birthday in the midst of all those appointments! 




Wednesday, July 2, 2014

Cully's Kids 2014


"Start where you are.  Use what you have.  Do what you can." Arthur Ashe


They are the words that I will carry with me.  How can you not be inspired when Matt Cullen tells you in his event closing speech, it was these words, 10 years ago, that helped launch the first Cully's Kids event.  That first event?  The Cullen's raised about 14,000 dollars, and they were thrilled.  


Fast forward 10 incredible years, and last Friday we kicked off the 10th and final Cully's Kids Celebrity Weekend.


With 288 golfers signed up for the first day, Friday morning got off to an early start.  Rick and the boys left before 6 am to ensure they arrived on time.  I came just a couple of hours later.

The weather was threatening with ominous black clouds due to roll in and scattered thunderstorms were predicted throughout the day.  How much golf would there be?




Matt welcoming the first round of golfers.  A second round of golf would be played in the early afternoon. 






While the "celebrities," are NHL hockey players, the real celebrities, are "Cully's Kids."  Each one is invited to attend a special meet and greet, in between the golf rounds.  This year, each kid received the coolest hockey jersey, and they couldn't wait to get them on right away.



The tent was decorated with everything a kid could ever want! Matt Cullen autographed hockey cards, candy, and a poster featuring each child from previous years. 




It wasn't long and the kids started arriving.



As I went about shooting photos, I discovered a big surprise for me.  The boy in the sign below- the one crinkling his nose?  Is a photo I took last year.  I've never seen my photos used in this way and it was such a blessing and surprise gift to me.


Rick spent the day photographing each foursome of golfers and they went home at the end of the day with a keepsake photo.


The first sighting of this boy made most of us well up with tears almost instantly.  Garrett Grommesh was born with Spina Bifida, and has been in the hospital starting sometime in December, and has had only a handful of days out of the hospital.  He had only been discharged two days before this event and no one was sure if he'd feel up to coming.

But in true Garrett fashion, nothing, and I mean nothing, keeps this young man from living life to the fullest whenever he can.  You amaze us Garrett!  As do the rest of the Grommesh family.  




The Cullen's were overjoyed as they spent time catching up with Garrett.  


Its clear the bond, Bridget and Matt share with the kids.


He was so joy filled and we delighted in watching him run about freely.


Matt is so engaging with the kids.  They light right up when he comes to see them.


But Matt isn't the only one who brings a huge smile to these kid's faces.





The bonds show.  Everyone is so happy to have this time with Matt and Bridget.


And then some more of the celebrities arrive.  Zach Parise and Chris Porter are just two of many that show up to do photos and autographs with the kids.





Hockey legend Dave Christian, played on the 1980 Olympic Gold winning hockey team- also known as the "Miracle on Ice."  I get goosebumps every time I think about it.  I told him I remembered the game well.  And he told me his favorite part is hearing what everyone was doing when they saw the game.  I told him I had to watch on our 13 inch black and white tv sitting on the kitchen table.  But I didn't miss it!  I watched nonstop coverage of the whole series of games and its probably my most favorite hockey moment ever.  Who would ever think I'd grow up one day and meet one of the players?  



 Lots of newspaper and tv media coverage lasted all weekend long.







With rain threatening in the distance again, we left late in the afternoon and arrived home as the rain began to pour from the sky.  We were thoroughly exhausted, but another big day of events was ahead of us.



Saturday, with still more rain threatening, we kicked off the picnic.  So many of our hockey families come to volunteer for this event and it feels like a family reunion for so many of us.  Green shirts abound everywhere, and so many of us volunteers feel like we walk away with more than we could ever give. 



Nolan was assigned to the plinko game with his buddies Nick and Jacob.  



Of course, the highlight of the picnic seems to have become the dunk tank.  Bridget and Matt equally share in getting dunked by lots of Cully's Kids.




Ice cream, soda and a full picnic menu is included- the food is delicious! 



There was merely 15 minutes left when the rain finally burst from the clouds in a heavy downpour.  



Then just as quickly, the rain disappeared and we were off to rest for a few hours before the big night ahead of us.



I have to admit, my energy was depleting quickly by this time.  But I rallied, knowing this was our final   Cully's Kids event.




How lucky I was to start my night off in the best possible way.  This is my forever friend Kristi, who just completed a Mary Kay fundraiser for me.  Here she is handing me an incredibly generous and amazing gift she worked so hard to earn.  Thank you doesn't begin to cover the gratitude I feel for such a unique and successful fund raising effort she created on my behalf.  Thank you to everyone who supported the event with their purchase of some Mary Kay!  



I had barely arrived when I ran right into this sweet friend, Bridget.  She looked stunning!  I had to contain myself, as I literally would have cried if I said too much. She had a vision of what this final live and silent auction would look like, sharing it with me over lunch one day- and she far exceeded all of my expectations



This beautiful friend, Heather, truly has a generous and kind spirit that radiates out from her.  She has been by my side, overseeing the radiation treatment I receive at Roger Maris.  I couldn't feel more well taken care of, or blessed, to be in such compassionate, thoughtful and well- executed care! 


This guy was the first item that met us at the silent auction.  I wish I could have gotten all of him as his feet were adorned with hockey skates! 


There were so many fabulous items up for auction.



After Rick and I made the rounds, we headed outside to the tent where the food and live auction items were on display.

It was so pretty inside!  It felt like a wedding celebration.  It had Southern influences everywhere in the details and was simply breath taking upon arrival.  













One of the highlights of the night is discovering who has purchased the key that will open the door to the beautiful necklace inside?  Amber, is it you?



Nooooo.  But the woman who did win?  Had been a volunteer, working from the crack of dawn, till the wee hours of the night.  We were thrilled she walked away with the beautiful necklace. 



Before the final items were auctioned off, Matt spoke.  It had most of us in tears, with the sheer impact of his well chosen and emotion-laden words.  We were puddles.  



Its pretty much what I told Matt as we chatted outside, before going into the tent.  I told him if I tried to talk to him, I'd cry.  So I got a big hug instead- he knows.  He really knows.  



The last photo of my night is with another treasured friend brought back to me through her work with Cully's Kids.  Wendy is a Child Life Specialist at Sanford who has been part of the process of working with Matt and Bridget on the cabin room for kids going through cancer treatment, to be built in the new hospital.  Wendy and I not only went to Concordia College together, but we spent a month in Europe traveling together after college.  


Whew.  My legs started cramping and an ache settled into my bones as the night wore on.  I had truly pushed myself to the end.  I had nothing left, and was thankful that Superman half led, and half carried me out to the car at the end of the evening.  

I'm still fatigued and sore.  But my heart is full and my spirits are soaring.  

I've spent the last few days, editing photos, writing a short story, and trying to recover from the enormity of all that transpired. 

10 years after that first Cully's Kids event raised $14, 000, the 10th and final event raised a staggering $1,033, 000!


I keep going back to that quote from Arthur Ashe, "Start where you are. Use what you have. Do what you can."

Look what they did!  

It makes me think of my word "become."  What is it, I can do?  











When you get lucky

When you get lucky

Popular Posts

Minnesota.com

Minnesota.com - MN Weather, Map, Businesses and Blogs