Friday, June 27, 2014

…love does...


I'm falling… in love… with the book, "Love Does."  I've just cracked it open, and I want to dive right in, all the way, right away.

But I can't just yet.

Do you ever start reading a book and then its like the author crawled inside your head and started writing straight to the center of your being?  


“Living a life fully engaged and full of whimsy and the kind of things that love does is something most people plan to do, but along the way they just kind of forget. Their dreams become one of those "we'll go there next time" deferrals. The sad thing is, for many there is no "next time" because passing on the chance to cross over is an overall attitude toward life rather than a single decision.” 
― Bob GoffLove Does: Discover a Secretly Incredible Life in an Ordinary World

This weekend, I'm going to an event that pretty much epitomizes what it means to live fully engaged.  

I can't wait to come back and share all about our adventures from the Cully's Kids weekend.  I've been asked to write a little something about it, so I'll be putting my reporter's hat on and taking it all in.




Have any of you read this?  




I received so many thoughtful cards and gifts these past couple of weeks.  The "Soft Surroundings" Catalog, came from a blog reader.  Plus, she sent a generous gift card so I could buy something.  The catalog is filled with accommodating and beautiful pieces that I could so easily wear to cover my surgical dressings comfortably.  She completely read my mind!  Thank you!

Plus the Oakes yearbook staff that sent me the survivor coin has a favorite quote of mine- "We don't know how strong we are until being strong is the only choice we have."  Amen to that.





As I walked with the nurse's aid to infusion on Tuesday, Dr. Foster happened to be walking by.  He lit up, and came right over to see how I was doing.  I had just a minute, as the nurse was well ahead of me by then.  But it was good to see him.


It must have been my day.  As I sat in my armchair waiting for my Herceptin to come, I looked up and out of the corner of my eye, all the the way across the nurses station, I see Dr. Panwalkar hurriedly walking by.  Then suddenly, he stops, smiles, and waves really big right at me.  I smile and wave big, right back.

Just a few more weeks I'll see Dr. Panwalkar for a visit.  







Tuesday, June 24, 2014

…the song sings...



In summer, the song sings itself. ~William Carlos Williams

  For over 20 years, I spent summers at the lake with my family in and around the Detroit Lakes area. 
When I was really young, we started out in a pop up camper and rented a weekend spot at Lost Valley Resort, on Trowbridge Lake, for the summer.  For vacation, my dad would take a week off from work and we would spend all week at the lake.  I was in heaven.  It didn't matter to me that we used an "outhouse,"  I could pinch my nose closed and hoist my nightgown all in one swift move... Laura Ingalls had nothing on me. 

Oh the things that stay with us.  Like trips to the resort store for maple nut ice cream, and jolly ranchers for a penny.  The distinct smell of hotdogs and s'mores made over the fire.  The way a sunburn stings and how my mom would let us cool it off in the lake late at night sometimes under the glow of the moon.  I can still hear the laughter of my cousins who camped nearby, and the roll of the Yahtzee dice as they clacked against the picnic tables. 

Its abundantly clear, I have and will always be a water-loving, lake-swimming, sand-digging, rock-skipping, sun-worshipping, boat-riding, summer girl at heart- who longs for time at the beach. 

Over the years we went on to spend time at other lakes- Long, Big Cormorant, and Meadow to name a few.  But going into "town", or Detroit Lakes was always part of the summer's adventure.


This weekend, with a beautiful day on the horizon, Rick, Nolan, and I,  packed up the old boat, grabbed Rick's Dad, Jim, and headed out for a day of adventure in Detroit Lakes.

Colton, stayed back and took care of Crosby.





The lake is big, and has every kind of lake home imaginable on its shorelines.  





I love that you never know what you will see around the corner.  This tiny dog never flinched on that slippery surface of the kayak.


Long Bridge is a resort and restaurant on one side of the lake.  We've eaten there several times and its a fun place to hang out for an afternoon.


We thought about fishing on the other side of the bridge… but


the water is seriously pretty high.  

Instead we watched as the next group prepared for take off!  I watched and watched, but we were long gone before they jumped.


Back through the channel we went- past Gull Island.


Finally,  the boys dropped me off at the beach and were on their way to fish.  Are any words really needed?





I spent a relaxing afternoon, taking photos, reading, chatting with people nearby, playing in the water, and relishing all things "lake."



Hours later the men came back to the beach so we could cross the street for our favorite place to eat... Zorbaz.  





With out bellies more than full from our pizza feast, we headed back out to the boat.

The sun was just at the golden resting place in the sky where everywhere you looked something dazzled in the light. 










We fished our way back across the lake to catch up with Nolan.  Nolan had generously been offered a chance to go water skiing by some good friends of ours who live on the lake.  

Nolan had a blast!  He'll come back for more lessons Andy- he is determined! 







Nolan spent a few weeks studying for his youth watercraft operator's permit.  He took the online class and passed! 

So we turned the wheel over to him.  Yikes.  He officially looks like he belongs.




I think Jim caught the biggest fish of all-  I don't do it justice in the picture I tried to take- but that was a nice size northern! 


Smile….





All too soon, the sun was soon dipping below the trees.  Longing for one last look as I ran for the car, I ran up the hill, around the corner of the building, and there it was, the sun just sliding down on our beautiful lake's adventure.





I had the most wonderful surprises in my mail box this weekend!  Thank you to the Oakes Yearbook Staff for thinking of me.  Also thank you to Annie- your thoughtful and generous gift truly touched me.  

Herceptin infusion today.  Would welcome prayers for my wound to tolerate Herceptin and not break down as it has in the past.  Its truly healing nicely and I am so happy with the outcome so far.  

Ann Voskamp mentions her "soul holes," in her book "One Thousand Gifts."  Cancer may be my soul hole, but I feel so "alive" and am busy filling my gratitude journal with oodles of new gifts through my lake-filled eyes.  Summer, sunshine, and all of you, have indeed been the patch to any hole in my soul. 









Friday, June 20, 2014

expand...



It was sometime last spring when Sanford reached out to me to see if I would share my radiation treatment story with one of their writers.  The email outlined that my doctors would be included in the story, and that they would use it for their internal computer system and maybe some print work.  

And then somewhere along the way, the whole thing went a little wonky.  Not in a bad way, it just never truly was what they had initially outlined it to be.  

For instance, when the photographer came.  They had set out to photograph me at my computer.  So I fanatically cleaned all around my living room.  Forgoing the clutter left by my mother's things still stacked in boxes and piles left all over the counters and floor of my kitchen.

So I was surprised when asked to move to the kitchen, until I saw the light streaming through the window. Plus, the photographer, assured me they would crop out the background, and zoom in on me, not the clutter.  You can start laughing now- silly me. 

The photographer was kind, professional, and treated me so well.  I was duly impressed.  He even gifted me with all of the photos and I felt blessed by the whole process.  Then he passed along his work to the marketing department. 


But if cancer has taught me anything, its to never be surprised when you open yourself up.  

My hands, opening wide, have learned to grab hold of it all- the light, the heavy, the less than, and the more than… and sometimes the other than…


The truth is, the mess in the background behind me in the photo?  Is real.  No photoshop took place, no cropping it out.  My mess.  Its truly what my house looks like most of the time. And I barely blink at it.  Friends have even offered to come and help me and I decline for now.


What I do love is that the quality of the picture is good and my friend Michelle's artwork is brilliantly displayed in the portrait of Crosby she created.  


The second surprise, was that the writer's questions, weren't about radiation, but my whole cancer journey.  Somehow, Dr. Panwalkar became involved and said the nicest things about me.  And Dr. Foster, who has successfully treated my brain, twice, my back once, and my lungs once, was also quoted.  The story is actually very nicely done. 

The third surprise?  The "print" story was being submitted to Area Woman magazine.  Rick had just been contacted by them to submit pictures of Cully's Kids for a story on our friends Matt and Bridget Cullen.  And that led to them asking me to share my thoughts about Matt and Bridget.  Its a small world. 

So many coincidences.  


So my story in Area Woman magazine is here

The Embrace, Sanford Cancer Survivorship Program is featuring my story on Facebook today. 

Area Woman is a free publication that can be found at the grocery store and many local businesses. 





Below, is a snapshot of the actual story in the magazine.





Plus how cool is it, that two of my most favorite people, grace the cover of the very same edition of the magazine?  

Their story is one that would make a great book!  But if you want just an idea of their truly great story, just follow this link… Matt and Bridget Cullen: Cully's Kids story. 

We're heading into the 10th and final Cully's Kids weekend next week, and are both humbled and honored to be a small part of it each year.  







So I met with Dr. Antoniuk yesterday.  I had barely gotten into my gown and she was knocking on the door.  She opened the front and instantly started smiling.  "Oh, this is doing well."  

She then asked about my drain output.  "10 cc's each day."  

"Thats what I hoped for.  Perfect."

And she says the words before I can fully grasp her next move.

"So lets get rid of that drain!"

And in one quick movement, she quickly snips and then firmly pulls and the whole drain tubing snakes out of my chest wall.  Its painful, and yet so quick it hardly has time to register.

She bandages up the hole left behind and says in a few days when it closes, I can go back to showering.

She'd like to see me in two weeks, when she feels the tapes and glues will start peeling off the incision and she'll finish removing them at that time.  



I'm grinning, ear to ear.  


I'm sore and tired for most of the day.  Finally able to truly rest in a comfortable position.  

I rest.




















Wednesday, June 18, 2014

recovery





I'm not sure when the stitches pulled out from my drain.  But the black threads are hanging in the midst of flakes of dried blood from my JP drain attached to a bulb for collection, hanging from underneath my arm.  The tube, however,  is somehow still in my side, and still draining fluids away from the wound, so that this time, it can heal.  It was the fluid, that collected in a pocket under my skin, a seroma, that never resolved and led to the weakening of my incision the last two times. So I am careful again.  Hoping the drain can work, leading the fluid away from my healing incision. 

My entire approach to recovery is much more conservative.  On Saturday, I took a pain pill after a restless night of attempting to turn on my right side, only to feel the tightness and pull of skin stretching, and realizing I had to go left, or stay on my back.  

So when the dull ache set in, I went with pain meds, only to break out an hour or so later.  My face looked sunburned and I itched from head to toe.  As soon as I googled Hydrocodone, I saw it can be a common reaction.  It took two doses of Benadryl for any relief to set in.  But I was a groggy mess the rest of the weekend-  slowly yielding to being very mentally foggy, and quiet. 

So I read a little.  And have streamed a few shows on Netflix.  I even managed a shower, from head-to-toe, and marveled at the cleansing refreshment I've missed for so long.  It was awkward, and disjointed, and I am clearly out of practice, but the simple joy nourished me and I felt so accomplished even while having to tumble into bed to recover for a bit afterwards.

Other than the boys coming and going, and Rick working, its been far too quiet around the house.
I'll see Dr. Antoniuk tomorrow morning.  In the meantime, I'm baby stepping my way, back into the land of living, and hoping, and dreaming again.  






















Friday, June 13, 2014

home...




Wednesday was a long day.  So much waiting.  I arrived at 11:45, a tad early, so we expected having to wait a bit.  At about 12:45 my pager went off.  We had been watching the Food Network Channel- which is just all kinds of wrong when you haven't eaten or had anything to drink since 8 pm the night before.  Rick and I were highly amused at the idea.  I was all prepped in no time,  as an OR sat waiting for me at 2.  But then I heard Dr. Antoniuk was actually helping Dr. Bouton with another surgery.  (Dr. Bouton is the one who did my first two surgeries with me.) 

Soon Dr. A showed up to mark me and said they were getting the OR all set up for me.  "It won't be long now," I thought. 

Could I be any more wrong? 

Sometime around 3:30, Dr. A came back to say, all of the surgical staff?  Was no longer there.  So they needed to put a new team together and it would take at least another hour.  She was clearly not happy- but what can you do?  So TWO hours later- they finally came to get me.  They graciously offered Rick a free meal for the inconvenience of waiting so long.  

I was alert and wide awake as they wheeled me into the OR.  I scooted onto the table, observing everything around me. Oh how I wished I had my camera.  

Then the mask went over my face and I was asked to take 5 big breaths.

And then the funniest thing happened.

The last part I remember hearing them say is- "Look!  She has one earring still in her ear!"

I can't believe I managed to get 2 earrings out, but the third one?  Apparently chemo brain helped me forget to even know I had that third one!  

We all got a good laugh out of that.  They taped it off for me…

And I was out.


But surprisingly, when they were done with the surgery- they told me I woke up in the OR and started talking right away.  I'll be very curious to find out what I said! 

I had a wonderful male nurse in the recovery room.  He has a son who plays hockey at the squirt level, so we had plenty to talk about. He also very nicely answered all my questions, and had Rick come sit with me.

The biggest surprise was when Dr. Bouton peeked in to check on me!  


At 9:30 they said they found a room for me.  The hospital has been overflowing with patients, and getting a room is monumental.  

But not only did I get a room- I got on THE floor- 2N.  

Its a women's unit.  And they had remodeled the rooms to try out various features and functions, as a trial run before they build the new hospital.

Seriously- it felt like a fancy hotel.

The bathroom was tiled.  There was hardwood look to the floor.  We had a large flat screen tv attached to a wall unit.  The room was huge!  

I felt so comfortable and had such good care.


But no matter sometimes, all the good, some of the hard stuff has to show up too.

My heart rate kept dropping, setting off alarms, at an alarming rate.  It would go down  to the 30's and then shoot back up to 100.  From bradycardia I would shoot all the way up to tachycardia- neither of which is very comfortable. 

I had also been instructed I had to sleep in a sitting up position.

So sleep eluded me that night.


But Dr. A came in early yesterday morning.

And I think because you all prayed so fervently for me- the surgery had gone smoothly!  Plan A worked!  She only had to move my pectoral muscle a little and then discovered she would not have to use any dermis at all.  She used my own tissue to pull everything together.  She said in surgical terms?  I was boring!!  I've never been so happy to hear that word used in regards to me.  And as a parting gift?  She collected a whole box of bandages for me to take home!  

You should see my incision now.  Much longer- from midsection of my chest all the way to my arm pit. Straight- no jagged edges- and closed with stitches, glue, and then clear tape over the top. It looks amazing.

I got a fancy new bra with velcro hooks that allow me to attache my JP drain to it.  

The only thing I truly forgot to do - was find some clothes to wear that will cover the big bulge of the drain.  I  just need loose tops of some kind.  I will have to look online maybe when I am up and around more.  Or I am open to suggestions?  

So yesterday I got to go home!  

I slept and rested well.  It wasn't until bed time last night that I truly began to feel the soreness/pain  settle in.  She warned me about this.  

I have a pulling and tightness- a tender ache, all around my ribs and chest- reaching around to my back and down underneath my arm.  

She said no driving, no lifting, no reaching, no nothing, with that arm. 

So I'm mentally counting my gifts- they are so abundant- and saw me through yet another big moment of my life.  

And the biggest gift? All the wonderful love and prayers streaming through to me on my phone yesterday! The strength, the fortitude it gives me is unsurpassed!  

To all the new friends finding me on fb- I was so honored!  

To the ones who sent gift cards for food, and the ones that brought food to our door- thank you! 

It all helps!  We're simply blown away by all the ways you continue to bless us so, 3 long years into my  ride with cancer.  

I can't wait to come visit my blogging friends to catch up soon!  

But for now I'm off to rest and recover- to heal that wound because the summer is fleeting at best- and I don't want it to slip past me in any way.


"We shall steer safely through every storm, so long as our heart is right, our intention fervent, our courage steadfast, and our trust fixed on God."
- St. Francis De Sales


































Wednesday, June 11, 2014

"deeper than my feet could wander"… today is surgery...

I'm racked with emotion.  As the normalcy of life goes full bore, we hear of our friend, Lisa, a cancer sista, preparing for her journey to her heavenly home.  My prayers for her, whispered unceasingly, that she be filled with peace, love and light.  


And yet, the fullness of life swirls round.  Nolan plays in his final "Junior Spuds," Pepsi Cup tournament, where they end on a win as Consolation Champs this past weekend.  Its a weekend of backyard barbecues and campfires with friends, along with lots of hockey games and graduation parties galore.  We're happy, tired, and sad all at once.  So many "ends" and so many "beginnings" happening at the same time.  



We have company, family coming from far away to spend some time with us.  As the boys begin their hockey camp, their FP3 off ice conditioning, their baseball and golf.  

My mailbox floods and I am filled with gratitude for all those who reach out to me.  Through cards… words… prayers… gifts… deeds…

As I await word of the time of my surgery, I prepare to lay myself open.  To surrender.  To fully rest in His hands.  


Pastor Mary calls to offer the gift of communion in our home Tuesday morning.

I graciously accept.



With remnants of our dinner from the night before still clinging to the table, with the never-ending clutter so central to our lives, she places the wafers in the midst of our mess- squarely where it belongs.  

Because the light streams through regardless.

Rick notices as he grabs the camera and watches the light splash around the table.

And the bible opens and her eyes come to rest on Psalm 104. 

This is the portion she reads, leaving the rest for me to read later. 



Psalm 104

King James Version (KJV)
104 Bless the Lord, O my soul. O Lord my God, thou art very great; thou art clothed with honour and majesty.
Who coverest thyself with light as with a garment: who stretchest out the heavens like a curtain:
Who layeth the beams of his chambers in the waters: who maketh the clouds his chariot: who walketh upon the wings of the wind:
Who maketh his angels spirits; his ministers a flaming fire:    and so on...

(I read the rest later… "This Psalm speaks to the very beginning, when God created sea and land, cloud and sunlight,  plant and animal, light and darkness, life and death- all filled with the presence of our Lord ")



Then we pray.  

She leaves me with the imagery of the "garment of light."  








I will arrive for sugary at 12:15 today.  Your prayers are most welcome.  Due to the late time of the surgery- between 2 and 3, I may be admitted for the night.

Rick will put out an update on Facebook.

So grateful to have all of you, surrounding all of me. 

Special prayer maybe for my one tender hearted boy who was teary eyed all night?  


"Spirit lead me where my trust is without borders."  

Amen.

Love to you all.

All shall be well. 















Wednesday, June 4, 2014

anchored with hope


It started with the little white pill.  I was down to my last lopressor pills, on a Sunday.  And we simply didn't call a refill in on time.  So I took a half that morning and night to get by.  It was Monday night, as I went to take my handful of vitamins and several tiny pills.  And one of them felt like it slipped out of my palm and went down into the sink… and I envisioned it had gone right down the drain.

At first glance, I saw nothing.  So what would I do if I didn't ever see it?  How would I know which one fell?  Which one I should take?  Here I had missed that lopressor pill, and badly needed to take it for my heart rate to be on an even keel. Panic set in quickly.  So I sent up a quick "help, please."

 As I bent over to see the sink more closely, I was astonished to see, somehow a little white pill had stuck to the side of the sink and was waiting like a gift for me to rescue.

Holy canoli!  It felt like someone was watching out for me in the tiniest of ways.

I notice these small moments so much more often.  They feel so big to me.

The next morning I hurried off to infusion at Roger Maris.  As I registered at the front desk, my friend Cathy, beckoned me over to her registration spot.  She handed me a little box saying, "we all have one, and I thought you should have one to wear too."

Inside was a dainty silver necklace with the word hope scrolled into the chain, along with a silver cancer ribbon- to me signifying all cancers.  (I draped it over the canvas in my top photo.)

I was so touched.

I quickly sat down and worked the clasp loose and then closed it around my neck.

Shortly, I heard my name being called and I was walked back to infusion.

I was settled in quickly and had my blood drawn right from my port.  It was slick.

But after checking, my nurse Toni, said I wouldn't get tumor marker results until the next day.

So I sat and waited for my iv bag of herceptin to arrive.

And waited.

And waited.

The pharmacy was all backed up, it would be awhile.

So I journaled.  I read.  I wrote.

An hour later, my drug had finally arrived.

And then in the midst of everything, my nurse reappeared with a single sheet of paper.

"Apparently, they were wrong.  Here are your tumor markers."

I'm barely focused on what she is saying, as she smiles and hands me the sheet.

My tumor markers went DOWN.

My tumor markers went from 42 to 32!

They'd been slowly climbing each week, and then, wham.

And suddenly I wanted to see Dr. Panwalkar in the worst way!  If anyone would high five me, or hug me in a knowing way- it would be him.

Its the tiniest victory.

It simply means, the Arimidex must be holding the tumors in check at least.  We still won't know, until I have a scan a few weeks after surgery.

But it feels like "more time."  It feels like gift.  It feels like grace.







I even make it to baseball to watch Colton play later that night.

I come home to prepare a special gift for a special woman.

One of the first breast cancer survivors to come into my life- my friend Steph.

Who just so happened to become Colton's teacher this year.

How lucky are we? 



I found this book mark in the cities and it spoke to me of her.  We put a bunch of goodies in a bag for her and hope she can feel how grateful and blessed both Colton and I have been by her presence in our lives!  

Finally, I crashed last night but had to read just a few pages.  I am still dog-earing and highlighting and re-reading my Cold Tangerines. And there it was.  All that I have felt, and slowly been discovering. 

Here is what she so brilliantly summed up for me:

Shauna Niequist is speaking of writing:  "What writing teaches me, over and over, is that God is waiting to be found everywhere, in the darkest corners of our lives, the dead ends and bad neighborhoods we wake up in, and in the simplest, lightest, most singular luminous moments. He's hiding like a child, in quite obvious and visible places, because he wants to be found.  The miracle is, that he dwells in both… the light… and the darkness."

I could just keep going on- its all so worthy.   Her words keep rhythm with the strumming of my heart, and the evenness of my breath and I am sleeping soundly in no time.

















When you get lucky

When you get lucky

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