Thursday, September 27, 2012

when you can't get to the place you want to be...

Tuesday we took Colton for his CT scan.  It was a two minute scan and it went really smoothly.  What wasn't nearly as smooth, was my trip up to wound care.  I simply wanted to reschedule the appointment to next week, as a new scab is forming again.  Its next week, after infusion, that new scab will likely "weep" and come off.  The arrangements were simple enough.  But the climb of 4 flights of stairs?  Be still my racing heart.  I know how deconditioned I am, but that was ridiculous to be out of breath after what would normally be an easy climb. I make a mental note to discuss with Dr. Panwalkar next Tuesday. 

We next met with Dr. Elliott. Colton's scan showed a somewhat "thin" structure of either bone or tissue so Dr. Elliott thinks he can safely go through the nose for the surgery.  But, he also discovered that Colton's adenoid is very generous on the left side and he felt that needed to be removed in a separate surgery first. We have to check with our insurance first and then we will come up with a plan.  Because hockey season is around the corner and Colton doesn't want to miss his season, we may do one surgery before and one after.  Dr. Elliott thought that was a reasonable plan.  

So yesterday I downloaded a pedometer to my phone and took off for a walk.  Before I had my mastectomy last fall, I was walking 3 miles a day.  I managed about 8/10ths of a mile yesterday.  Oy.  I seriously need to work on that.  

On the way home from haircuts for the boys last night, I noticed the sun bowing down. I grabbed my camera, but it was much too late already.  Once it gets below the trees, getting an unobstructed view is hard.  I raced in the car to three different spots, but my lungs and heart couldn't physically take me to get a really decent vantage point.  

The thought of my lungs not able to keep up very well with where I want to take my camera, makes me wonder about what my physical limitations may look like in the future.  







I was a little disappointed that I couldn't capture any of that golden goodness streaking across the sky.  Until I saw this last photo.   Do you see what the sun peeking through the trees made?  It quite literally stole my heart.  Plus it taught me once again, something I seem to need every once in awhile. Even when I can't get myself to the place I want to be, the place I am can be quite amazing if I'd just look around to see what is already there. 





Monday, September 24, 2012

remembering Sara... choosing joy


One year ago today our sweet Sara departed her earthly home and went to her new heavenly home.  I've been wearing my "choose joy" necklace with her name engraved on it.  I like tangibly feeling the sturdy metal with traceable letters that I can tug on again and again in remembrance of my friend.  The light surrounding the picture reminds me of the radiant spirit she was.  I'll never fill that Gitz-sized hole in my heart, but I'll always bask in the radiant light of her spirit that I feel everywhere. 



Superman and I escaped alone yesterday.  With the leaves rapidly changing, and the sun shining so intensely we took off in the car and headed towards lake country.  It was serene, with saturated colors and a stillness in what is typically a lively and noisy summer vacation hot spot. 

“The miracle is not to walk on water. The miracle is to walk on the green earth, dwelling deeply in the present moment and feeling truly alive.”  Thich Nhat Hahn











The whole day felt magical.  The light twinkled, pranced, radiated and hummed all around everything.  Blues ranged from sky blue to turqoise to teal.  Reds were punchy and bright.  Oranges and yellows glowed in amber waves.  


As we turned to leave we drove past this gate and I instantly made Rick turn around and go back.  I have this same image from dozens of angles.  My favorite is under wraps, waiting to be revealed when its ready.  I can barely utter the surge of joy I feel when I see it.  I've come to clearly see Joy in thanks to Sara and her reminder to always seek it.  And what I can now add- is that joy chooses you back.  















Saturday, September 22, 2012

homecoming


This little man was so brave yesterday.  It seems we've underestimated the amount his birth defect bothers him.  It is easy for us to overlook.  Nothing is visible on the outside.  But the place where there should be a hole- an opening between his nose and the back of his throat?  Is closed.  On the day the opening should have been made in utero, it didn't happen for whatever the reason.  Its called choanal atresia and its fairly rare.  

It made for a harrowing delivery, as he came out tinged blue and requiring oxygen and the NICU until they determined what was wrong.  As an infant it meant for many sleep deprived nights as I faithfully suctioned his nose, clearing the thick mucous so he could breathe and sustain his sleep.  We were told surgery would fix the problem, but it wasn't always successful at a young age- the hole had a tendency to go closed again because the aperture was so tiny to begin with.  

So we've waited.  And grown used to repositioning Colton when he snorts and snores tries to catch his breath at night.  We all sleep pretty lightly it seems.  But we've just always been used to it.

This year however, at his yearly physical Colton piped up to his doctor.  He told him foods don't taste good, and he feels tired all the time.  His weight puts him in the 25th percentile which means he is very thin and lean. So my heart skipped a beat or two as he calmly asked if could please have surgery and fix his nose.  

Yesterday, we took Colton to an Otolaryngologist (Ear, Nose and Throat doctor), who specializes in pediatric cases.  I assumed he would want to do a scan of some kind.  I was unprepared for him to want to "scope" Colton's nose.  But Colton sat dwarfed in that big blue chair, his eyes wide, his feet dangling, and sat very still letting the doctor spray lidocaine up his nose to numb him, then inserting the scope up his nose to take a look.  *Shudder*  It looked so uncomfortable. What I wouldn't have done to climb in that chair and do it for him.  

We will do a CT scan on Tuesday to determine the best route to get into the nasal cavity- through the nose, or through the palate in the mouth.  The first route makes for a less invasive surgery, but not always a successful outcome.  The second route is more invasive, but the outcome is generally more successful.  Because of the rarity of the deformity, surgeons only encounter a handful of cases throughout their careers.  


We pray we are being guided into making the best possible decisions for our Colton.  He has such big hopes that he food will taste better, and that he will sleep deeper without waking as often.  He apparently even thinks his feet will become faster so he can improve his time in the mile run!  Ha- gosh we love that kid!  Will keep everyone posted as this new journey unfolds before us.  


We capped our big day with Moorhead High's Homecoming parade. We donned our orange and black and headed over, Colton rebounding fairly quickly and wanting to go. The weather was sunny at moments, but laced with gusts of winds and overcast clouds that made it instantly feel chilly and cold.  As former Spuds, Rick and I always delight in bringing our Mini- Spuds to Moorhead High activities.

Rick grabbed the camera from me and took all these photos while I sat chatting on the sidelines... I think the camera is a hit.  I'm excited to take some fall photos but I am going to have to hurry- it seems fall has descended rapidly upon us and the leaves are blowing off the trees before they've fully changed colors... brr...
























Wednesday, September 19, 2012

savoring

“Taking pictures is savoring life intensely, every hundredth of a second.” 
― Marc Riboud


Superman rescued me on his way back from Idaho.  He bought me a new camera.  Every so often, someone will gift us with money to use for whatever we need/want at the time.  Cards and notes will specifically request use this for something fun for the family.  Use this to get a pedicure.  Use this to go out to dinner, etc.  If there is a specific way in which someone requests that we use the money- we honor that request.  

But when its not specified, I've stuffed it in an envelope adding to the money we received from all the bracelets sold so long ago.  I've dipped into it once in awhile when a need arises.  Nolan needed new shoes just 3 months after we bought him shoes. Colton needed a goalie helmet this summer, etc.  But by and large that envelope is untouched and I shove whatever comes not earmarked for our medical fund, into the envelope.  I've always been a saver.  


So low and behold, there was enough for a new camera- while still leaving the original bracelet money intended for our someday trip.  

I took the new camera out for a spin today.  It would have been my Dad's 83rd birthday today.  In honor of him we headed out towards our church which is still next to open spaces.  















“The camera is an instrument that teaches people how to see without a camera.” 
― Dorothea Lange



Okay- so I haven't gotten very far out of program mode yet.  


But I did come away with a list of everything I savored-

the tranquility
 the peace
 the amber light
 the golden memories of my dad
  time spent with my husband shooting photos


What are you savoring today?













Monday, September 17, 2012

today I will be...

Source: etsy.com via vita on Pinterest


We're going to church.  I race off to awaken the family.  I find the dog asleep in Nolan's room and wake a groggy boy who rolls over and tells me to go away.  I gather clean clothes and sigh at the heaps of dirty ones blocking my path to the washing machine.  I want to grab a quick shower but the sight of my wound gives me pause.  I add "call wound clinic," to my list for Monday and head to the kitchen sink.  I didn't grow up with a shower in the house.  The kitchen sink had to do for washing my hair.  I am a pro with my neck at odd angles, tilting just right, so that the soap doesn't get in my eyes.

The boys complain, and I coax, cajole, plead and prod.  As my energy wanes, I begin to feel like it may just not be worth it.  

Finally, with grumbling boys we load the car and leave for church barely on time.  As tired as I am, I've already screwed up on Nolan's confirmation class and he missed the first one.  I resolve to make this work. We'll drop him at class and go home to finish getting ready for church.  I'm feeling overwhelmed with all we have to do with Nolan's confirmation class.

Then...

The new assistant pastor, asks the parents to stay.

"Come from a place of yes..." flahses through my mind.

How can I not stay?

She had come to my benefit just to introduce herself to me.

And really- did anybody care that I didn't have mascara on or church-y shoes and the rest of my jewelry?

She quickly hands out morning "snack."  Its individual bags of unpopped corn.  She talks a bit and then asks "hey, why isn't anybody eating their snack?"  The kids snicker, and finally tell her- it isn't popped corn.  "Oh she says, it hasn't had anything applied to it- so it can open- or "pop?"  

She then references the bible.  The bible is like that.  It doesn't do us a lot of good as a book- as a tool of faith, if we don't OPEN it first and get inside.  I see minds opening just like the bibles laying in our hands.

She plants a few more kernels of truth, and class ends as church starts and we hurry to find a place to sit.

Its after worship that we find ourselves drawn to Pastor Mary again.  And what is it you do?  She asks me.  Well, I, manage cancer.  

How do you do that? She asks.

I guess I just try to stay in each day and squeeze the most out of it that I can.

Oh, she said.   Sounds pretty intentional to me.  None of us are really any different from one another.  Why we think we'll put things off for another day when really, TODAY is the day worth living.  Live today.  

And then one of the kids adds in... "and she blogs"

Yes, I've heard, but not read yet, she replies.  I will though. 


And does blogging help you live more authentically?  She asks.  Its like preaching, I find I have to hold myself to the standards I proclaim every day.  And I fail sometimes, but then I'm human.

She gets me, I think.  Its as though she has already read and knows my heart.

After breakfast out with the boys, I am thoroughly exhausted, and re-fueled all at once.




















Friday, September 14, 2012

Old Faithful...


I miss my camera.  I'm reluctant to purchase a new one right now.  I'm feeling the urge to develop a broader knowledge base, and getting out of program mode on my point and shoot.  The irony to me is just how much time I spend editing photos to my satisfaction on the backside.  What if I just invested my time up front and learned to shoot photos properly in the first place?  What a novel concept...  smiles. 

Along with my camera I have also missed having my husband home this week.  Superman went to Idaho again for work, leaving early Sunday morning and is returning home today. The week has gone well- but this single parent gig has kept me on my toes every day.  I had infusion on Tuesday and even though it was just Herceptin which is pretty tolerable, it knocked me down more than it usually does.  

I awoke this morning to two texts with these photos.  Rick stayed at the Old Faithful Lodge last night and got up at 6 am to shoot the sunrise and catch Old Faithful in the act.  Beautiful... we never lacked for breathtaking views and sights while we lived in Idaho.  Its just the 18 hour drive between Minnesota and Southern Idaho that makes life challenging.  



Coming off of our big benefit weekend, I have had an intense desire to be quiet.  My heart has been so open, and I hope to be able to hear and know what I am supposed to do next.  

In the quiet unfolding of my days, I have noticed a residual grief clinging to me... my Dad's birthday would be the 19th of this month.    A year ago today,  Gitz started hospice and was preparing to make her way to her heavenly home.  And with the recent loss of Carole barely a month ago, maybe its just a season of "missing" for now.  

There is something really comforting about those geyser photos.  Something solid and sturdy about them.  Predictable, and yet mysterious all at once.  







Monday, September 10, 2012

"live like you were dying..."

I was entranced with the Stand up 2 Cancer celebrity driven fund- raising event- televised  Friday night.  

Tim McGraw got it just right... I'm paraphrasing his song here...

Live Like You Were Dying




He said
"I was in my early forties
With a lot of life before me
And a moment came that stopped me on a dime
I spent most of the next days
Looking at the x-rays
Talkin' 'bout the options
And talkin' 'bout sweet time"
I asked him
"When it sank in 
That this might really be the real end
How's it hit you
When you get that kind of news?
Man, what'd you do?"

And I loved deeper 
And I spoke sweeter
And I gave forgiveness I'd been denying..."
Like tomorrow was a gift
And you've got eternity
To think about
What you'd do with it
What could you do with it
What did I do with it?


All day Friday auction donations continued to come to my door, and arrive in the mail.  My phone lit up with messages about the benefit being held in our honor on Saturday.  A dear friend, surprised me with a make over and an outfit to wear for the benefit.  She actually decked me out for fall- with blingy jeans, and jewelry and shoes and a handbag and... I have tears thinking about how big Barb loves.  Really big. 

Saturday morning in the cool and dark depths of the laundry room, I flung myself on the floor, my heart bursting with abundance. Dear Lord, help me be able to take it all in.  Keep my feet grounded, my heart humble and please let me glorify you.  I poured it all out- emptying to fill again. 


And then this from my Jesus Calling devotional by Sarah Young: "Accept each day exactly as it comes to you... on some days the demands seem far greater than your strength... Your assignment is to trust Me absolutely...  I will infuse My strength into you moment by moment, giving you all you need for the day... Trust Me by relying on My empowering Presence."  


We arrived at MYHA just half an hour before it started and it was buzzing with activity already.  I inadvertently let go of my camera too soon, while handing it to Rick, and we watched in dismay and horror as it smashed on the ground.  Its an inexpensive Canon point and shoot... but its my life line too.  Hmmm, I actually feel kind of naked without it.  

But Jim, Rick's Dad, graciously stepped in to shoot some photos.  These are all compliments of him and of course are just a fraction of what he took.  The rink is extremely hard to shoot in and I am grateful he captured the spirit of everything so well.  

We didn't get photos of everyone however.  There were literally so many people I would have wanted to take photos with and share with you all...  I know I will overlook people inadvertently... please know, my heart is bursting and your contributions were not overlooked by me.  Whether you came just to see me, or to donate a few dollars, or donate an item- or you baked my favorite brownies (Aunt Carol)  it all counts equal to me.  The common denominator is always love and it all carries equal measure to me.

And so it begins with my sweet friend Heather.  She is as beautiful on the inside as she is on the outside.  She is the charge nurse at the Radiation Oncology department at Roger Maris where I receive treatment.  And she can now add to her list  "bona-fide phenomenal benefit planner."  She incorporated all of our wishes, and blended in the brilliance of many others and blew us away with the magnitude and scope of the benefit.  I can only imagine the hundreds and hundreds of hours she and her whole family devoted to making this a huge success.  She has our forever gratitude. 



The silent auction items were staged upstairs in the lobby area of the rink and then extended all the way down one side of the rink.  I am judiciously choosing a small sample of the items and tables to share.













Brenda to your left below in pink, is another one of the event organizers.  Her and her husband offered up their house to collect and assemble donations and put in tireless hours of work for the benefit.  Her favorite things basket inspired me to make one.  She is a truly generous spirit. 



Larry on your left is the legendary radio voice who announces all of our Moorhead athletics and Cobber football games and a lot of other things I will inadvertently leave out.  Standing with him is my friend Carrie who also works in the Radiation Oncology department of Roger Maris.  It was Carrie who scheduled my first Oncology appointments in silence and then greeted me my first day at Roger Maris with a huge hug of comfort and love.  We go all the way back to high school and I don't feel like I could do any of this without her by my side.



I was so honored to see so many of my relatives.  My cousin Kevin is putting skates on his son Keenen as my Aunt Marlene watches on.  



Our very special surprise guests brought a crew with them.  The day that I discovered my back pain was due to a bulging disc, and not cancer, within minutes of me texting a friend, Bridget Cullen was knocking on my front door having already heard the news.  She burst through my front door and grabbed me in a hug filled with relief and joy for me.  We chatted briefly and then she said "Oh, and by the way, Matt and I are for sure coming to your benefit."  That Cullen family sure knows how to take my breath away.  

The photo below is almost all of the Cullen Crew.

So all night long at the benefit everyone would ask me- Have you seen Matt yet?  I hadn't.  I met Matt's mom Nancy, I talked with Bridget several times, but Matt was signing autographs, and talking with people every time our paths would be about to cross...




Matt's Dad Terry, with Rick and I.  



Our friend Mark with Terry- two hockey legends in their own right.  


Grandpa Terry with two of his grandsons.  On your left is Wyatt who was celebrating his birthday and just turned 4 that day.  Happy Birthday Wyatt!  Thanks for sharing your birthday with me!



It was kid nirvana with Games Galore offering 3 bounce games and a dunk tank... 


Could he be any more excited? 



Finally, as I spy Matt out of the corner of my eye, someone grabs me and says its time for the live auction.  What?  How did 4 hours just fly by already?  The auctioneer did an amazing job, and graciously volunteered his time for us.  


The crowd gathered... and then...





I felt arms go around me... and there he was.  As Matt and I talked I tried to will every ounce of gratitude I felt  towards him to leap from me and cling to him somehow.  I murmur thank you a few times and he says, of course and shrugs like its no big deal.  "So much of this is Bridget," he says,  and I know this is true.  But I tell him its Bridget plus Matt...  its both of them together. 

And I think back to the song...  love deeper, speak sweeter... what did you do with it?  

Well the Cullens give- thats what they do with it.  They give of their most precious resources- their time- their love- their hearts to others.  And they unite all of us in that circle of love.  



Minutes later, Superman is asked to help the auctioneer with a description of the final "package" offered by Matt and Bridget.  Its tickets to a Wild game, and then a meet and greet with Matt afterwards, and then a tour of the locker room.  And then there is dinner for 4, and an overnight stay at The St. Paul Hotel.  Rick can tell you that even his press credentials don't yield a locker room tour.

But then Matt leans in and whispers that he'd like to "sweeten" the pot a little.  He'll throw in an autographed stick.  And oh, so will Mikko Koivo, and oh, so will Zach Parise.

What?  I see people visibly shake their heads- which hockey loving fan wouldn't want to do all of that? The bidding closes with an extemely generous amount being given for the package and I am on the verge of tears... again.  And then I feel everyone tapping me on my shoulder and pointing at Rick as he looks at me.  And tells me he loves me.  And I am undone.  



And thank goodness my friend Shane below, grabs my hand and hugs me, because he knows.  He too had his life changed in a blink of an eye and had his community of Bemidji come out and support him.  He knows the depth of love we feel amidst the gritty in our lives.  



My cousin Pam also came out to see us and her husband Scott on the far right.  Keenen is a huge Matt Cullen fan so he was pretty pleased with his night. 


But the night wasn't over yet.  The band Catalyst was just getting started.  And while none of us had heard of them?  We all agreed we'd go hear them play again sometime- they had a great sound- and were beyond generous in donating their playing for the night.  So we danced and sang while the kids bounced and played. 


I was on about my last breath here... I was running on sheer adrenaline and a little diet coke- which I rarely have.  Our family owes Joel and his wife Amber more than we could possibly ever repay.  Joel trains Nolan off ice, and has literally helped Nolan transform his body.  He is lean and solid and quick.  And FP3 and Joel are responsible for those results.  If you want to play hockey and get results, FP3, I'm just saying... Matt would tell you the same thing.


This is my girlie Anne- she is my heart friend through and through.  We're neighbors, but so much more really.  She got Burger King to donate over 80 percent of the food.  Yes- that was a lot of food!!  She worked her tail off in making so many things come together.  Where would I be without my Anne?  



A benefit on the surface is about raising money.  But far greater?  Are the connections we make with each other.  I was so honored with how many people shared a bit of their story with me.  Whether its a cancer story, or a chronic illness story, or a hard times story, they are meant to be shared and used to connect us, lift us, encourage us- unite us.  Thats what benefits do.  

Tim Mcgraw had some pretty profound words in his song Live Like you were Dying... 

Somewhere lodged firmly in my heart is a simple thought.  All shall be well.  I have no earthly idea if I'll ever be healed of cancer this side of heaven.  But I am blessed beyond measure.  

And I know I will live out my life answering the question "What did you do with it?"  

I'm loving bigger

I'm speaking sweeter...  

I'm just getting started...

How about you?  




















When you get lucky

When you get lucky

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