Friday, July 31, 2015

owning our story

I feel I'm being tested on "loving myself through the process."  Quite honestly?  I'd like to turn and run.  Yeah, so much for bravery.  But do I really have a choice?  So this is a bit of my week last week, of learning how to "own my story."

I was groggy from all the pre-meds for chemo, when Amy arrived at my front door the other day.  I had just finished round 2 of chemo, and was chilled.  So I had plunked my foggy self down in the front yard, soaking in the sun.  And look what she brought?  A pillow, her mother Mary made, from one of my t-shirts!  See the "Team Vicky," on the boxing gloves?  My heart swells, every time I look at it.  Plus the cute bag?  I can use it for chemo.  Thank you, Mary!  Thank you, Amy!  Love, love, love! 

But there were more surprises too.  I've put some in my special "pink" corner of my room already, but here are a few more.  Thankful to Jenni who brought me some of her sweet mom's things, and treats and snacks for the kids, too.  I'm honored she would share her mother's hairpiece with me, and will see if I can alter it to have it fit.  (I seem to have a big head- literally.) And the beautiful pashmina, with Hockey Fights Cancer, on it.  The shawl is soft, warm and fits so nicely over my shoulders- thank you Bridget for always thinking of me! 

I wasn't up to attending the Blue Angels air show this past weekend.  So we drove to a parking ramp and went to the top level.  Rick got to shoot pictures, and I got to sit in the air conditioned car at the same time.

Even the Blue Angels were speaking my language.

And so it began...  the morning I got up and washed my hair in the sink... and tried to comb it.

But chunk after hunk after gob of hair came out in my comb.  It blanketed the back of my shirt, the floor of the bathroom, my pillow, and everywhere I went.  

Tears streamed, and vulnerability grew.  I was a wreck!  This second time of hair loss, was no easier than the first.  

And my stylist?  Was swamped this day.  

So I reached out to my friend Cindy, who graciously agreed to shave my head. 

So Anne, (on the far left), took me to Cindy, (in the middle).

And my sweet friends, helped me cope with an emotionally filled day, with all kinds of treats and compassion.  It was not only my first time of shaving my hair all the way down, it was Cindy's first time doing it for a friend, as well. Together, was the best way through it.

The floor all around the chair, covered with the last remnants of my hair.

Which means...

Stella is back! She is more red than I recall.  But still sassy.  And hides that vulnerability a bit, so I don't have to stare it in the face all the time.  

Even Dr. Panwalkar didn't notice for awhile.  But then when we were sitting, face to face, he peered down, and looked straight into my face and said, "That's not your hair!  But it looks great!"  

His compassion oozes through his words, and I felt seen.  He sees me.  

So I'm adjusting.  Trying to own my story, while being sensitive to those around me.

The boys, who don't like my "bare" head just yet,  and avert their gaze if I forget to cover up.  Or the poor person, who comes knocking on the door and I rush, then pause, my hand running across the bristly roundness of my head.  Did they see?  Do they know?  

Does it matter?  

It's just part of my story... and I'm learning how to love all the way through it.

Friday, July 24, 2015

the big scoop

I loved this quote when I first saw it.  I think you could easily drop off part of it and simply say... Never get so forget to make a life.  

Its been nearly 3 years in the planning.  Moving Rick's office and photo studio out of the rented space  he once had, and into our home 3 years ago has been a mixed blessing.  While its good to have Rick around the house, and has financially been a huge savings, the office has overtaken all of the family space downstairs.  It's where they boys could do homework, or hang out with friends, or watch movies.  We're all on top of each other, mixing our personal life, with business.  

So we've been taking our time and looking into all of our options.  We've looked at so many homes.  But our house has everything we need.  All we really need is space for Rick to work, with some separation from us.

Slowly the idea of adding onto our house started to take hold.  Again, we spent many months looking into what our options might be. 

So with lots of research, and great advice, and help from friends, we broke ground last week! 

Even Crosby has been a little displaced...

As the hole got deeper, I started physically feeling sicker and sicker last week.  The reflection below, is of me being wrapped in a blanket, snapping a photo, despite heat in the high 80's.  

And then the black clouds rolled in.  The streets flooded... and guess what else filled up with water?

Our freshly dug hole!  We joked about how it had gone from Rick's office to a swimming pool!  Ha- and yuck!  

But the water got pumped out the next morning and the forms went in right away.  

This is the point I was knocked down in bed, so the pouring of the concrete I missed entirely.

Fast forward to this week, and we're in waiting mode now.  The concrete has to "cure."  But soon enough the framing will begin. 

We're sort of embracing the "chaos," amidst the chaos already encircling our lives.  

We've also officially given Crosby a nickname- "therapy."  He has the biggest heart, wrapping those big paws around my arms and holding on for all he is worth.

And slowly, I've turned the corner.  Am up out of bed most of the day now.  I still tire easily, and have a host of side effects, with a new one cropping up each day it seems.  But as challenging as its been, I can't adequately express how much, others have touched me these past couple of weeks.

I was reading Annie's mailbox in the newspaper this morning and this part of a reader's letter really struck a chord with me.  She was making an observation about aging. 

"We all need to feel needed.  In our younger years we race through our busy lives.  Once we reach our senior years, all of those connections and obligations fade.  We need others to validate that we still matter..." 

I think those feelings are akin to what you feel when you're faced with living with a serious disease, like cancer.  Lately, its taken up so many parts of me, so much of my time and energy.  

So I just wanted you to know... my gratitude still grows daily.  My gifts numbering in the thousands.

Like,  when you send me a note, or text, or call me.  Or, every time a card comes in the mail.  Plus, each knock on our door, visit to our house, and gift received.  

You make me feel like I matter, and that will be the best gift I can ever receive.  

Friday, July 17, 2015

the birthday misadventure... and the gift

I never would have thought it would be Dr. Panwalkar who would give me my biggest Birthday gift yesterday...

It was just a case of the sniffles two mornings ago.  I sneezed and sneezed.  But then it started to change as I readied for bed.  My heart was beating so fast.  So I took my meds and awoke yesterday morning, ready to celebrate my birthday.

I was so touched by the outpouring of well wishes showing up on my fb page!  I sat responding, and sneezing, and aching.

Then shivering.

Then heart racing again, and I was next back in bed.

And soon we're calling.

"Come right in to the treatment center."

Dr P it seems, had a sudden cancellation and he could see me in an hour.  

That alone was a gift.

By the time I got to the clinic my fever was spiking, and my heart was racing and I was declining.

"Dr. P, its my birthday, this is the last place I really want to be."  

Dr. P said, "well, we'll see how your blood counts look,  and decide admission to the hospital after that."

So officially, my blood counts came back "low," or as they like to say "in the toilet."  Neutropenia wins as my immune system becomes almost non-existent.  (Normal is around 1500, and mine was .7)  This sets my body up to not be able to fend off any germs, bugs, etc.

So straight to infusion I go.  And bags of IVs are hung and antibiotics are delivered and fluids and pain meds.... bag after bag is given.

And my phone just keeps dinging away with all kinds of well wishes, and Rick and I can only chuckle.  

I even wear my FP3 shirt ( Ferrie Performance is where both my kids do their athletic training and I wear their shirts as much as my kids do) for extra strength.

It also just so happens to be that Dr. P is on call this night, so he bounces back into my room a couple of times to check on me.  He is still deciding upon admission for me. 

"Dr. P, I was born here, in St. Lukes Hospital, 48 years ago."

"Really, and it was St. Lukes, then?"  

"Yes," I say, I stayed with my mom that night, but this time, on my birthday?  I'm just visiting!! 

He hearty- laughs, and says we'll see. 

But shortly later,  he comes back and decides, as long as I promise to call him middle of the night if I get worse?  He will let me go home!  

And part of me thinks- all of those well wishes created just the positive energy force I needed to pave my way home. 

So its late, as Rick and drive through the stormy night, back home, which feels like the biggest gift to me.

This is part of the post I had started earlier yesterday...

My friend, Joy made these for me.  You write a word on a sticker and then attach them to the glass beads.  You take a word with you each day... see mine for yesterday?  How cool, that wish was front and center.  Thank you Joy!

This cake brings me right back to my childhood.  Its homemade by my Aunt Carol, and was always featured at our birthday parties growing up.  Its made from scratch, and is so moist and delicious- I even managed a slice last night late when I got home.  Thank you Bill and Carol!

Here are a few more goodies I have received.  I'm more behind than ever in writing notes of gratitude, but I am so touched, by each thing, each time.  

The boys were so excited to show me this, when I got home.  Colton literally felt like it might have been HIS birthday, with all the cool stuff we got.  Thank you, Sue's mom :)

I could barely prop myself up.  I'm as stripped down, bare and real, as I can be.  

But I'm here!  48 feels pretty great.  And I got every stinkin' one of those candles in one big breath!  

Tuesday, July 14, 2015

"It is well with my soul."

When peace like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou hast taught me to say,
It is well, it is well, with my soul.

Each day, I've been praying to just turn the corner.  To somehow "go back" to feeling well. To be that mom, that friend, that wife, I long to become once again.  

But after a few days of recovering from my 3 chemo cocktail last week,  I awake to a sticky substance seeping from my nose.  I had thought this might be the day I'd begin to feel better.  As I raise myself up out of a deep slumber,  I swipe my nose with my hand only to see the deep red droplets of blood, now splashing down around me.  I hurry to find a tissue, but as I rise my stomach cramps and the intensity of the stabbing pain has me clutching my stomach as I double my efforts to just make it to the bathroom.

The stabbing pains have been on and off for awhile now.  Intense, but also brief.  Just enough to make me catch my breath. 

My tongue erupts with small sore spots.  I have trouble eating even small amounts of food, with a constant feeling of fullness. I scan the booklet filled with side effects and what to do for them, until my eyes glaze over.  

Soon, I find the days meld, one into the other.  

Suddenly, its Saturday.  Having embraced the chance to go with my friend, Roxane, to the Carmelite Monastery,  I quickly choose to allow distraction to guide me today.  So despite the morning nosebleed. Despite the intermittent pangs shooting through my stomach.  

And the hair.  In spite of the hair I am suddenly losing.  The pile I clean off the floor before I shower.  Then gasp, as I shut off the hair dryer later, only to discover, a bigger pile on the floor.  

Despite this, and the phone call I've received in response to my inquiries for a summer wig. 

My insurance company has suggested the perfect way to garner insurance coverage for a summer wig.  Simply ask my doctor to look at my head and decide what he sees is "alopecia."  Because I don't have any insurance coverage for a cranial prosthesis, due to chemotherapy hair loss.   But I can get coverage if I have a script for "alopecia."  No wonder I feel nauseous.  (Stella saves the day- a cut and a new style and she'll be good to go)

No wonder I can't wait to "escape," out my door.

It feels immensely appropriate for the cloudy skies to begin to release rain drops as we travel to Wahpeton, to Carmel.

I relish feeling the cleanse of the water washing over me.

As we pull into the driveway...  that feeling of arriving at "home" surges inside of me.

Almost instantly my mind hushes and dials down, as my eyes feast on the glory all around.  Words it seems, become unnecessary.  Language always surrounds me in the sounds of the birds, the hum of the wind, the whirl of the leaves and prairie grasses,  and the smell of the fresh rain.

Our time on retreat passes by quickly.  I'm immersed in nature, and solitude and sharing bits of my heart, and longing with Him.  

As we leave to go and treat ourselves to dinner, the sun sinks just low enough to light up the fields around us.  "Amber waves of grain," crosses both our minds.  

As always, I leave feeling refreshed.  With a vibration of love and peace in my heart.

Despite what my body says, "it is well with my soul."

But Lord, 'tis for Thee, for Thy coming we wait,
The sky, not the grave, is our goal;
Oh, trump of the angel! Oh, voice of the Lord!
Blessed hope, blessed rest of my soul.

Horatio Spafford

Tuesday, July 7, 2015

learning to play through...

I'm giddy packing to go.  I can't believe a stay at Grand View Lodge just fell into our lap.  I'm literally humming songs from "Dirty Dancing," as I hush the boy's bickering and get them to hurry up.  The memories go back to over 25 years, ago.  My brother worked many summers at the lodge, and we got to go as his "guests."  Words just can't begin to do it justice, and I rush back in the house for my camera, as I ready to go.  Will I even be able to sleep?

Just under 3 hours later, we pull up into the main lodge parking area and are instantly lulled by the scenic landscape that abounds everywhere- a postcard picture around every turn.  Where do we begin?

The boys see the shuffleboard in front of the lodge and are ready to play, even though we don't have our cabin yet.  Then they see the bikes, the paths, and the gaggle of kids running off to the next thing.  I feel the boy's giddiness fall in step with mine.  We just want to go.  And do.  And be.

This is the view off the deck, and its calling me out to the water already.  I throw my bags down, and before we are even inside, I am off to the lake, breathing as deep as my lungs will allow.

This boy- said quite firmly- he'd only go to golf.  Then scampered off alongside of me right down to the water and began skipping rocks instantly.  He is so my boy!  

I feel the water cleanse my feet, over and over again, His mercies fresh for me by the baptism of the water crashing over me, wave after wave. 

My mind stills as I take in my surroundings.

It's fairly evident where the name "Gull lake," comes from.  There is a carefree way the gulls fly in, and flutter a bit above, then just as quickly circle around and fly back the other way.  I'm entranced.

And so are the boys...

Merely a half hour after being at Grand View Lodge, the boys are already asking if we can come back next summer?  They hadn't even seen the whole place yet.  

It cooled off rapidly our first night and we got to light a campfire down on the beach.  We were soon joined by others, and had a relaxing, enjoyable night.  I slept, really, really well.

While the boys were up early the next morning with tee times for golf, the water was calling my name.  

It was the perfect temperature, warm, but not hot.  With lots of sunshine.  And a great read- a real page turner that does not disappoint!  

It takes a pretty special place to put an indoor pool, next to the beach, and both are kept busy simultaneously. 

And right between the pool and the beach?  A family style restaurant and bar.  You could play bingo, listen to live music, swim, and then eat dinner, all in your bare feet and swim suits. 

The best part of the pool?  The open sliding glass panels, that let parents sit outside in the sun, while the kids swim inside in the pool.  

I think a smile was permanently etched on his face the whole time.

This one loved that he gets to drive the boat now.  We brought our fishing boat, and the boys could often be found somewhere between the boat and the golf course.

It was Rick who kept telling me to wait until the lights came on to go and take a photo of the lodge.  I  swear, I expected "Baby" to trot past with a watermelon at any moment.

The view leaving the lodge was just as breath taking.

Every path seemed to lead to a hidden gem of one kind or another.  This one?  Pure sugar heaven.  Every kind of candy, from salt water taffy to jelly beans in every flavor,  and even ice cream was available.  We quickly discovered "happy hour," was from 6-8 pm- buy one ice cream cone- get one free.  We were regulars, just to be perfectly honest.

The golf courses were a brand new experience for our boys.  They were a whole new level of challenge and demanded the utmost focus and attention to detail, as well as good golf etiquette,  for our boys to play.  They have always watched The PGA on tv and this felt like they were playing on one of those courses.

So no Minnesota lake vacation is complete without a trip to the local Zorbaz for pizza.  

This one happened to come with an Elvis impersonator, and can I just say?  He was quite good!  There was a whole lot of dancing spontaneously erupting around us and tons of applause after each song.

Just a bit of one of his songs...

Our days went quick, and our nights even quicker.  But our moments were long, and full.  Could a girl ask for anything more?   The handiwork of God was so abundant and breath taking.  I simply sat in awe and surrendered to the whole experience.  

Yet, even though my heart is full, my spirit strong- my body is showing steady decline.  The "hard parts" are sitting side by side with the good. My stomach is distended, and cramps and aches after eating.  Its tender and uncomfortable often.  My blood work numbers are falling out of the "normal" range.  I am spending way more time in bed, trying to ease the discomfort, and rest from being tired.

I'm jittery from the big doses of steroids I have started, and shaking in my shoes, literally.  

Today the new adventure begins.

I will see the nurse practitioner at 8 as Dr. P is on vacation.  

A 3 drug- chemo-infusion begins at 9.

I'm learning to play through the hard parts... so my life can keep on singing.

Your prayers are so deeply felt.

I am a blessed girl.  

~All shall be well, and all shall be well, and all shall be well~ 

When you get lucky

When you get lucky

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