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! 









Tuesday, April 1, 2014

beyond words


I'm back from 4 days of hockey and a snow day yesterday- well physically back.  But mostly I'm still overwhelmed, completely moved, and lacking sufficient words in the outpouring of love, empathy, compassion and such great wisdom shared by all of you with me and my tiny family, these past few days. (I will be back to respond to each and every comment and email left for us.)

Sometimes, I feel so driven to write.  To release the story writing itself in my head, and most likely my heart as well.  It feels like it moves through me, more than from me and I'm not sure I'll ever be able to fully explain it. 

And then you all show up.  And through your emails, texts, and comments which, make me teary-eyed, I feel connected to each of you on some deeper level.  You all get it, whatever it is I'm trying to say- you just get it.  And I'm forever grateful.  For the ability to say it, and for it to be received in such compassionate grace-filled ways.  


Today, I had infusion and its not sitting so well.  I just need some anti-nausea and a good nap and I'll be better.  

But I'd be remiss if I didn't share with you all that Nolan's team,  a selection of kids from the "West" section of the state of Minnesota- all born in the year 2000- were the champions of the tournament!  

It was such an honor for two of our Moorhead boys to be selected- both Nolan and his team mate Parker.  But to watch them beat first the East team, then the South team and then lose to the North team.  But they still earned their way into the championship game and beat North for the championship.

Way to go West! 







While walking through the newly remodeled arena in St. Cloud, we happened across this wall portraying the alumni from the St. Cloud hockey program who have skated in the Olympics- and there was our friend Matt Cullen.  


The calm before the storm.  A blizzard was brewing and school was cancelled yesterday even though we only ended up with about 3-4 inches of snow instead of the 12-15 they had predicted for us.  


It seems that mother nature played the very best April Fool's joke on us, with the blanket of white snow she left for us to wake to today.  C'mon spring!  


When you get lucky

When you get lucky

Popular Posts

Minnesota.com

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