Monday, April 28, 2014

"glitter and glue"



She strikes a chord with me, that Author, Kelly Corrigan.  I sometimes think she peeked into my life when I pick up her newest book and begin to read.  I think, "how did she know?" And, "her too?" 

In her first book, "The Middle Place," Kelly is diagnosed with breast cancer, and her Dad is also diagnosed with prostrate cancer.

 “This is exactly what being an adult is,” she wrote, “. . . untangling a pink princess boa while wondering if you are a month away from losing both breasts, both ovaries, and your 
father.”

For myself, a self-proclaimed "Daddy's girl," I could so get how hard it would be to need your Dad, while watching him battle his own disease and wanting to be there for him equally.  How do you balance that?  Who takes care of who? 









Her latest book, "Glitter and Glue," is about her and her mother.  And there it is again.  I read her words, as if they are my own.  

Prologue...

"growing up… we were never one of those Mommy and Me pairs who sat and giggled.  

She didn't wink at me or gush about how pretty I looked or rub my back to help me fall 

asleep.  She was not a fan of deep conversation, and she still doesn't go for a lot of 

physical contact.  She looked at motherhood less as a joy to be relished, than as a job to be 

done, serious work with serious repercussions…"


Corrigan sucked me in from her very first lines.  

I've often said, I could write a book about living with stage iv breast cancer and all it is teaching me.  And yet, this is merely a chapter in a broader context. The other book I could write would be about my mother and I.  

After the birth of her children and after her treatment for breast cancer,  Corrigan comes to realize that her mother is the “glue” of her family, the one who  held it together, while her father, was the "glitter." The mother-daughter tensions Corrigan must overcome feel real, and everyday. Tangible and accessible to most of us who have been at odds with our mother at times.  “What is it about a living mother,” Corrigan asks, “that makes her so hard to see, to feel, to want, to love, to like?”

She claims "It didn't happen all at once.  Maybe it was inevitable, something that develops as daily life delivers its sucker punches, streaks of clarity, and slow-dawning wisdoms.  The fact is, lately it seems the only person who can lift the anvils that sit heaviest on me is my mother."  

I read the book in one sitting.  It both pulled at my heart and made me laugh all at once.  It turns out Kelly is only one month younger than I am, and her references feel as though she plucked them right out of my childhood.  

Those "slow-dawning wisdoms,"  are still occurring to me.  And I'm grateful I still have time to uncover so much more with my own mom.

The video below is a talk that Kelly gives on "The Great Adventure of Parenthood."

It's funny, wise and deeply resonates.  I hope you'll take the time to enjoy! 













Friday, April 25, 2014

destiny has no beeper



 Destiny has no beeper...

"Almost nothing important that ever happens to you happens because you engineer it. Destiny has no beeper; destiny always leans trenchcoated out of an alley with some sort of 'psst' that you usually can't even hear because you're in such a rush to or from something important you've tried to engineer."
(from Wallace's novel "Infinite Jest")









Nolan (13) Madi (14) Colton (11) and Alex (12) 











Nolan, hoping he'll grow to be 6'3 just like Uncle Lee- my "baby" brother.




She's on double time the week before they come.  She cleans more than she has in months.  She and Colton literally haul every tiny treasure out of Colton's room- including the marble collection, the golf ball collection, the 276 stuffed animals- each with their own name-and all the legos loosely found everywhere on the floor.

With her compression sleeve sucking her arm in tight, and the throbbing of her underarm, plus her swelling hand, she steels her mind instead for all she needs to do.  

As they clean, Colton and her make plans.  They create a treasure hunt for the eggs they'll dye.  He makes a list of the kinds of candy the Easter Bunny should secure.  She teaches him how to dust, to sort laundry, to clean the windows.  She rounds the corner out of sight, and sits when her lungs wheeze and her heart thumps too hard, willing her weary body to overcome.  

And when their to-do list grows budget busting long?  She decides she'll use some of the funds recently sent to her.  She isn't going to let this Easter pass her by. 

So this Easter Bunny shops up a storm.  She finds cookie birdhouse kits for the kids to put together and decorate.  She gets all kinds of egg dyes, sparkles, and sprinkles to make the eggs.  

She is joyfully crafting the best Easter experience she can.  

Her 2 nieces are coming, and along with her own boys they are 11, 12, 13, and 14, for a few more weeks, until the boys have their birthdays in May. She hopes she has the right stuff to entertain them.  She grabs gift cards for music, and candy, plus more candy, plus chocolate and candy.  Then she falls under the spell of finding the perfect books to tuck in their basket.  

While her energy wanes, her desire grows stronger.  She will craft a memory they'll hold onto for years to come.  She is literally putting all of her eggs in that basket.  

Its Easter!

Still, she and her mom-  awaiting the arrival of Lee's family, get parts wrong. Its late Thursday night when they go to pick them up at the airport.  The days, the times, don't jive with what they thought they were.  They will fly out early Sunday morning.  

Its hard not to feel trapped by the life you get when you're banking on the life you had planned.  

She discovers you can grieve the goodbye, as you barely begin to say hello.

The desire so strong to grasp hold of the old, the known, the "normal," in the midst of so much new nestled in with the fragility of life. 

But "destiny" knows.  Slowly, she hears the "pssst."  And she realizes, its "grace," calling her name.

She is editing pictures when she sees how clearly the most important things are still there.

Mom looks radiant in all of her pictures.  The kids clearly had fun.  The smiles on their faces in the pictures were genuine. They come together so easily.  Just like family.  Because they are.

The important parts are all together.

Mom calls me early Monday morning.

"I just had the best weekend.  Far too short, but oh it was just wonderful.  The picture on my wall of the kids is one of my favorites.  The church service, and everyone dressed so nice.  The kids playing so well together.  Having my son home and his family here along with my daughter and her family.  Just wonderful."

Destiny has no beeper… 

























Wednesday, April 23, 2014

The next thing...

Perhaps it was the red pants that led me to know for sure. She popped into my mind the other day- Kathy- my research nurse that managed my care for almost my whole first year of breast cancer treatment.

She almost always wore black but with some pop of color mixed in.  Sanford blue was not part of her wardrobe.  She was young, attractive, organized, and a great problem-solver.  She really was a liaison between me and Dr. P., and the infusion nurses.  She'd schedule my tests, remembering I needed sedation, or, early mornings, or not on Mondays, and then hand me a well thought out and organized schedule of appointments that always worked for me.  She came to see me at every infusion, every appointment. 

When I got booted off the study, she no longer was involved with my care. Losing her, left such a huge hole for me to climb out. I had to learn how to navigate cancer world all on my own and it was a big task.

For some reason, I was thinking about her the other day.  She left research, for another position and I haven't seen her in the last two years.  

Yesterday, at infusion, in a sea of nurses adorned in blue, I caught sight of a slim woman entering an infusion room, wearing a black cardigan, with striking red pants.  Could it be?

So I asked one of the nurses I know.  Is that Kathy?  It was.  She's back.  And while I didn't get to talk to her, I have a feeling I will somehow, again soon.  I can only shake my head at the seeming coincidence of my thoughts of her that led to seeing her.  



It felt good to see Dr. Panwalkar yesterday.  I'm not sure what it is, but I think part of me absorbs the positive energy he often exudes.  I also feel entirely in sync with him at times- with only a minimum of verbal exchanges between us.

There were only slight changes in my blood work and tumor markers.  Even though my WBC is really low, there was simply not enough movement to warrant any scans, or changes in treatment.

Besides, other than some intense hot flashes, some swelling in my arm, hormonal headaches at times, really- I'm tolerating the Arimidex fairly well.  

I grinned and told him, "its so much better than Tykerb," and he got a good laugh at that.

He also asked how the lymph node under my arm was doing… and I told him I had no idea… the thought doesn't occur to me to check.

He said "Ahhh, that is great!  That is what I like to hear, you shouldn't be worrying about that." He checks under my arm. "I feel nothing he says," sounding pleased, patting the top of my shoulder a few times before he sits down again. 

Its these tiny moments that I take with me.  I scoop them up and carry them with me like a bag of tools, that I can reach for, when my own voice doubts, or becomes uncertain.  Sometimes, I'm stuck worrying about what is to come, and forget to acknowledge the tumors we've conquered, the battles fought, and won.

And then we conclude with a quick discussion that yields the biggest new thing yet.

He says "and your wound?"

"Oh…" I say, "that."  "Not good."

That poor mastectomy wound from 2 years ago, just won't heal.  I've given up going to wound care.  I can no longer afford the 188 dollar for 2 boxes of 3 bandages, that my new insurance won't cover.

Plus, we got sent to collections for 11 dollars.  Yep- eleven dollars - in finance charges when we were trying to figure the whole mess out-got us into trouble.  Its a fact that we still giggle over.  (We're fine, one more phone call cleared the whole thing up, finally.) But I'm surrendered to a jerry-rigged garment thingy with all kinds of folded stuffing trying to double for the semblance of a breast shape under my shirt.  That and, not having showered in over two years. 

So Rick and I both shake our heads at the mention of that wound.   I explain to him how its a constant process of scabbing over, then the scabs peeling off slowly, only to have the "hypertrophic granular skin," start to weep all over again.

So I dare to ask… "Is a hyperbaric chamber too extreme to consider for my wound healing?"  Its the only treatment left, outside of surgery. Its hours away from here and usually requires weeks of treatment at Mayo Clinic. 

He thinks maybe yes.  But then, he wonders. "Should we discuss surgery again? You're not doing chemo, so surgery might be a good option for you right now."  

He offers to get in touch with Dr. Antoniuk, the plastic surgeon I've seen before.  She had offered to do a pretty amazing reconstruction procedure once before, but I had too much treatment I was doing first.

As Dr. P walks me to infusion, 
suddenly I realize, the doors to the next thing- a very big new adventure, are bursting wide open.












Tuesday, April 22, 2014

living it full


After the Minnesota Wild won their playoff game in overtime against the Colorado Avalanche last night, Colton still wasn't ready to call it a night.

He crawled in bed with me and even though his eyes were droopy with sleep, he would not close them all the way.

"Colton, why don't you just go to bed."

"I just don't want it to end."

"What, Colton? What don't you want to end?"

"Easter. Its really over, and I'm sad, everyone has left."

It's the post I've been working on- the one with all the fun, the Easter celebration, our company- and the richness of our blessings.  

"But tomorrow Colton, is a new day, filled with new hope, new beginnings…."

And as I say this, I look over my shoulder and find him fast asleep.


Today I have Dr. Panwalkar, infusion, a meeting at Roger Maris in the afternoon, then we have middle school orientation with Colton.  

We're living it full- all of it.  How about you? 

Back with our Easter celebration soon… and an update from Dr. P.  



Wednesday, April 16, 2014

gripping tight...


Jesus Calling, Sara Young, "Trust Me… and don't be afraid.  Your routines are not running smoothly...  Let Me lead you to the rock that is higher than you and your circumstances.  Take refuge in the shelter of My wings…" 


Spring resides IN my house, but outside?  

(Thank you to Nancy for the beautiful tulips!)



Not so much spring… this story is getting old.  

(April 16th, 2014)


Thankfully, the hockey has been great.  Nolan's new AAA team was undefeated in their first 3 games of this past weekend's tournament, which put them in the championship game last Sunday.

Nolan scored just a couple of minutes into the game and we got off to a quick lead.



Here he is celebrating with his team mate. 





Then he quickly buried another in the net for a 2-0 lead.



More celebrating...




But then, the other team scored a few goals too.  Nolan closed the gap with his third goal of the game, and got a hat trick.  But, with minutes left in the game we were down 7-6.  One quick time-out and we pulled our goalie for an added attacker.  We just couldn't bury it in the net.  They scored an empty netter, and we ended with second place.


It was on the ride home Nolan told us about his injured arm.  He had gotten his hand bent back by a defensemen he hadn't seen coming his way.  By Monday morning it was swelling and painful.  He went to the athletic trainer at school who suggested we get him in for X-rays the next day.

We were so well taken care of at Sanford Orthopedics Sports Medicine.  Dr. Noonan wasn't able to clearly delineate whether Nolan had fractured his growth plate or not, based on the X-ray we had done.  We decided to put the cast on his arm to immobilize it, and stop all activity with the arm for the next couple of weeks.  We will re-visit, and do a new set of X-rays the end of next week.  

This is one sad boy, who bravely played hurt and scored his third goal with an injured arm, in the hopes of winning the game.  The next few weeks will be a tough lesson in learning to adjust in not having the use of his arm, and not being able to play hockey like he so loves to do.

Yet, in the grand scheme of things, we are grateful parents, who know how much worse this could have been.



Sara Young- "When you are shaken out of your comfortable routines, grip My hand tightly for growth opportunities. Instead of bemoaning the loss of your comfort, accept the challenge of something new.  I lead you from glory to glory, making you fit for My kingdom…"

We're gripping tight, it may be with our left hands, Nolan and I, but we're gripping tight. 


Monday, April 14, 2014

Moorhead Girls



A friend is one to whom one may pour out all the contents of one’s heart, chaff and grain together, knowing that the gentlest of hands will take and sift it, keep what is worth keeping, and with the breath of kindness blow the rest away.
Unknown


It may have taken until 9th grade for all of us to become friends, but through our stories I discovered this weekend the seeds of friendship were sewn much before then.  Elizabeth and I went to elementary school together.  In 6th grade, 2 students from each school were chosen for a creative class together- and that is how Karla and Elizabeth met.  The ties were forming, long before we all crafted our most enduring bond- The Five Moorhead Girls.  

It seems that the more times we reunite, the more distance we travel through our connections, binding ourselves together more tightly each time.  

(From left to right)

Carrie, Vicky, Karla, Elizabeth and Kristi.

The Moorhead girls. 




It seems fitting that since a plate of "caramel rolls" brought us back together a few years ago- we'd begin our weekend with a trip to Nichole's Fine Pastry.  Its more than "fine," I'd say.  In fact, our food was devoured before I could remember to take any photos. 



But we didn't linger long over food.  We had some stamping to do.


For a fun activity Kristi helped schedule a jewelry making class.  We were going to learn how to hand-stamp and design our own necklaces.



We watched carefully as the instructor showed us how to use the tools and then she turned us loose.


We focused...


and laughed.




Laughed some more… and celebrated when we got it right! 


Focused again...



And when my own hand started to ache and swell?  Karla rescued me by creating my necklace for me. 



while in the meantime the rest of us were still laughing.


Debbi and Paige joined us for the class- Kristi's sister, and Carrie's daughter in front of us.



Just call me lucky.  Not only did I end up with a fabulous necklace, our evening would wind down at Hodo's.  Two words- yum, and yum.  


There was a beer rep in the restaurant and it was Carrie who convinced him we each needed a pair of the sunglasses he was handing out.  He carefully counted that we had exactly "ZERO" people drinking his beer, and then still graciously handed us each a pair of glasses.  Yep- those are my girls! 


It was Kristi who decided on the theme "Moorhead Girls Forever," with the orange and black beads for our school colors on her necklace.


It was also Kristi who artfully arranged the necklaces for me to photograph.  


What I love the most?  We all chose unique, and yet true to us, sayings and designs.  No two are 100 percent alike.  

I went with "choose joy," and so did Karla.  Karla is due to become the first one of us blessed with a coming grandson.  I believe "joy" was chosen for her indeed.  And I'll never stop wanting our Gitzen Girl's legacy to "choose joy," to go on forever.  I would have to say "joy" chose me right back this weekend.

Carrie chose "Embrace Life," and indeed she has.  In more ways than I can possibly express, she has.

And Elizabeth?  Stamped what I think is a complete and beautiful poem on hers, with a bird in flight as her symbol.  

You can "see" each one of us in our necklaces. Our ties strong, binding and permanent, as unique and individual as they may be.  



Friday, April 11, 2014

becoming...






I actually surprised myself by saying yes to this one.  Would I do a story about having Sterotactic Radiosuregry to my brain for Sanford Health?

I'm sure I sucked in my breath, slowly released it, and heard my somewhat distant voice say, "sure, I'd be honored to share that story."

My heart was racing as I emailed my consent to be contacted by someone in the Marketing Department of Sanford Health.  

I'm about to reopen that chapter of my story, soon.  Maybe thats why my stomach lurches a bit as I think about it.  

The quarterly brain MRI is scheduled, as is my visit with Dr. Foster two days later.  It'll be a year ago June, I had my last treatment.  The one in which I put on the white goalie type mask, have my head screwed to the table and have high doses of targeted radiation shot into the cancerous spots in my brain.  Its the second time I've done it, and lived to tell about it.  Its pure gift to me, a miracle of sorts- that I've done twice, and yet I can never fully wrap my "brain" around.  

Its a story that could help others realize that if I can get through it, they can too.  That even though you're afraid, you saddle up and ride anyway.  Because what you stand to lose if you choose otherwise, is too unbearable too muster when you stare into the eyes of your children.  Maybe, I could say the right things to help put someone else at ease?  

They were starting by sending out their photographer to shoot photos of me at my desk, blogging.

So I worked all weekend.  I cleaned, sorted, and organized.  I re-visited, re-read and re-lived the story through my blog.  I found myself biting my lip, clenching my toes, and shivering at times.  I was relieved to put it down and move on again. 

I got up shortly after 5 Tuesday morning, putting the finishing touches together.  I wanted all of the things that speak to me, to be surrounding me.  

The photographer was such a kind man.  It was fun to see him create vignettes, that I felt, truly were about who I was.  They felt natural, and not very far from what you might see me doing on a daily basis- they just weren't of me blogging.  He took a few of me at my desk,  and then we moved to my couch.  And then to my kitchen… and well… when Sanford says… I'm sure I'll be able to share in some way.

They photos truly are me, and some of my favorites are the ones with me in the kitchen.  They just weren't what I was expecting.  What I anticipated.  What I thought would happen.


It was the next day I got the phone call from the woman interviewing me.  

I'd certainly say it went well.  She started by telling me she had talked with both Dr. Foster, and Dr. Panwalkar, and she'd read parts of my blog.

It wasn't until after she started to conclude our conversation, that I realized, we hadn't talked about radiation.  Not once.  

Again, not what I was anticipating.  Not what I was expecting.  

I suppose it could leave me frustrated, or sad.  

But mostly, it makes me curious.  It makes me wonder.  It's made me think, that not always getting what we expected, might be a beautiful thing at times.  


I've surrendered to cancer so many times.  And now in my quest to "become" something else, in addition to a woman with cancer, could it be that surrendering to life itself, is key?  That somehow, surrendering to the moments that don't match our expectations, might yield even better outcomes than we could have conjured ourselves?  

Become, has been a bigger word than I anticipated for this year and I have much to wonder and ponder. 

So this weekend- I am running away- from pondering my word too much- with a little help from my friends.

Its a girlfriends weekend.  The expectations are really simple- I have none.  I just know- it'll be good.  Really, really good.  

Have a good weekend friends- really, really good! 











Monday, April 7, 2014

inspire-ing


“Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be.”
― Shel Silverstein



arm swelling

wound trying?

cancer dwelling

sighing…

snow never-ending

surrendering...

wondering-where's spring?









first robin sighting

golden sun streaming

snow vanishing

spring-ing

fresh air breathing

gift receiving

joy releasing



gift counting

soul stirring

thanks-living

"any-thing"

everything




I was so astounded to see the beautiful lemon and sunshine yellow bracelet from my friend Cindy, show up in my mail.  She wrote a beautiful note and said I "inspired," her.  THANK YOU!

I have to admit, I'm still looking for "that" girl.  "That" woman.  I'm looking over my shoulder when I hear about "her." When Superman comes home from the store or a hockey practice and says everyone was asking about "her."  Or "me."  "Me," I think?  Really? Mostly I still feel like the girl next door, the stay at home mom, who writes a blog and lives her life full, and oh yeah, battles cancer on the side. 

So I put my bracelet on and let the word percolate, and steep into me, wondering what I might learn.  

"inspire."










And then I found this card in my mailbox… and laughed… thats been me when I think of spring.  But suddenly spring is making a little appearance.  The temperatures have finally hit the mid 50's and gosh do they feel warm.  

It was the inside of the card that really did me in however. 

My friend Linda who has a beautifully written blog here, wrote to tell me the college students in one of her classes followed my blog all quarter and they held a fundraiser for me! Thank you to everyone who conceived the idea, gave of their time and energy and all who contributed!!  So honored and blessed by you all! 

And there in her words to me was that word again, inspire.  

So I took a closer look.  

inspire:

: to make (someone) want to do something : to give (someone) an idea about what to do or create

: to cause (something) to happen or be created
: to cause someone to have (a feeling or emotion)


What I have discovered, is that I grow inspired by all of you.  I'm surrounded by inspiration everywhere I look.  My "Choose Joy," pillow.  My baskets filled with cards.  The bookshelves filled with books.  The delicious meal cooked for us last week- so tasty- thank you Sharon!  My prayer shawls, the blankets on my bed, the gift cards, the fundraisers… the love and inspiration that comes through all of that does more for me than I can ever muster into writing a thank you note back to you.  My words fail, they simply are not big enough for the enormous amount of inspiration you all give to me.  

Tomorrow, Sanford (my healthcare provider) is coming to interview me for a story.  They're sending out a photographer and then I will also talk with someone and be interviewed so that I can share my cancer story.  I've been trying to prepare what I am going to say.  But one look at all the beautiful gifts that surround me, and my inspiration is everywhere my eyes land.

In the meantime, its a busy week.  Rick is going with my mom for an endoscopy test her doctor wants to perform tomorrow.  Her hemoglobin has dropped down suddenly and Dr. J wants to make sure she isn't bleeding internally.

I will head up to the clinic as soon as I am finished with my interview.

Nolan has also been honored to be asked to play with another AAA hockey team this weekend.  We will be going to Grand Forks Friday and staying till Saturday night, with a Sunday game tbd.  


Live inspired everyone.  Hope you discover what helps you live inspired! 









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