Thursday, February 28, 2013

Things I've discovered...

I was late getting to infusion on Tuesday for the one of the first times.  It meant 3 others were already waiting in room number 9, (Roger Maris's number btw), for their infusions to begin.  Typically we are staggered- but it seems we all arrived within minutes of each other.

I discovered... a sort of crazy phenomenon occurring... nobody was getting upset.  The longer we waited, the more tolerant and forgiving the patients all sounded.  Not only was our tight quarters cramped with recliners, beds and infusers all bunched together, but we had only tiny curtains providing make-shift privacy walls.  And yet nobody complained.

My total infusion time is usually 1 1/2 hours- start to finish.  On Tuesday, 1 1/2 hours in- I still hadn't gotten my drug from the pharmacy, and neither had the woman next to me, who had been there before me.  When the nurse apologized to her for the second time, she said, "oh I'm working, its fine, really no bother at all."  And she meant it.

From the conversations going on around me, you'd be hard pressed to believe you were in a chemo infusion center surrounded by cancer patients.  One woman when asked how many treatments she'd had of her drug responded with "16 gabillion, thereabouts.  I have no idea, I just keep hearing that its working so I just keep showing up."  The nurse eventually told her she was on round 17, which is really quite significant.

An elderly man was conversing with his son and they were going over his lab report which was spectacular.  "Well that time way back when my cardiologist said I had 6 months left to live, so I got a second opinion and that doctor agreed with the first one.  Then over the years, I attended BOTH their funerals and here I am.  No surprise really I'm still kicking even with cancer."

As I sat listening, my gratitude journal got a good work out on Tuesday... it rarely seems like a coincidence that I am surrounded by words, people and messages that I need to hear, just when I need to hear them the most.

"I've discovered- gratitude in everything, leaves me wanting for nothing."

When Sarah entered the room with a basket of goodies and this was laying right on top, it spoke to me instantly.  A store had donated some clearance items- what a great idea- and I am the happy recipient.

I was so filled up when I left infusion- figuratively and literally.  I went home and finished a small pay-it-forward project.

Candace Rix is the niece of my friend Carrie.  Candace was found to have a brain tumor a few months ago and has survived an extensive surgery, a lengthy rehabilitation period and many doctor visits.

My friend Carrie is heading up a benefit in honor of Candace and asked some of us girls if we would donate a basket for the silent auction.

The items have poured in from friends far away and the rest I have been gathering on my own.  Below is just a sample of the *cough* FIVE baskets we managed to donate!

There are so many goodies in each of these!

Thanks to Elizabeth, Karla, Kristi, and my boys for contributing all the items below!  

Elizabeth even sent a little something extra in case Colton was interested.  He was!  He picked the bear  and it has been wrapped tightly in Colton's arms every night since.

Elizabeth also surprised me recently with an offer that is crazy good and honors me so. 

I am taking a writing class online through the generosity of Elizabeth.

Its a spiritual memoir class.

It started last week and I am immersed!  I end my days so completely brain fried- its the best possible feeling.  

I've discovered... a lot of life happens in the midst of waiting if we're only willing to really live it.  

Monday, February 25, 2013

taking a chance...

Thursday night we headed out to the Scheels Arena for the beginning of the "legendary" Squirt International tournament. The Fargo Squirt International Hockey Tournament draws 128 teams at the Squirt A and B levels to the Fargo - Moorhead area from across the United States and Canada for a 3-day Tournament. According to their website, the tournament "Started in 1985 as an 8 team local tournament and has since grown in stature and reputation across the country to be know as the "Worlds Greatest Squirt Hockey Tournament." This was Colton's first year of playing in the tournament and he hardly slept the night before.

So what do 128 teams of 15 squirts each, look like?  Well, something like the chaos below!  

They begin the night with a group photo that doesn't seem possible- but every year it usually makes the front page of the newspaper. We watched a few of the relay races for the "squirt olympics," and then Colton wanted to get some rest for his games the next day.  We were facing a team from Colorado and had no idea what to expect.

It was a beautifully frosty morning as we started our treks out in search of all the rinks we'd be playing at.  The sun has peeked through a few days and the temps are feeling warmer.

With the distraction of such a fun event for the boys, we tried to leave cancer world on hold and immerse ourselves on the rapidly ending hockey season.

But I thought this was fitting Friday night... right on- indeed new things are on the horizon and taking a chance is something I have to get ready to embrace.  

Siblings of players have hours to amuse themselves at the rink.  These two cuties crawled under a table to trade pins and play games.  

It seemed fitting that we would play a Fargo team at the iconic Sunmart rink.  An old warehouse was converted into an ice rink.  The ice is smaller than we are used to, the rafters are low, the smell is rather distinctively unappealing and non-hockey-like.  And there are religious sayings all over the walls.  And yet, we have fond memories of having played in that old barn.

I would say parents and kids alike found a lot to get excited about.  Lots of vendors come and set up their hockey wares.  These spray painted hats are hugely popular.  Colton saved his money and had this hat made Friday night.  They can choose from pages of emblems to have put on the front and back of the hat.  Colton chose front the orange M for Moorhead with hockey sticks for the front, but it was the back that left me with a huge grin..

The Pink breast cancer ribbon wrapped around hockey sticks chosen by my son... but 

not just my son... half the team decided on getting the ribbon on their hats and I suspect this cute kid had something to do with it.  Jackson has been in Colton's class since 2nd grade.  He wears "Fight Like a Girl" shirts in my honor, as well as other pink ribbon items.  He gets the biggest grin on his face when he tells me- "its for you Vicky!"  Gosh I love that kid!!  

Our last game of the tournament was yesterday.  Colton is below getting his participation medal.  We were vying for third place in our bracket, but lost this final game.  

I don't know what I did to my arm Friday. I just know I fell asleep on my arm Friday night and woke up yelping in pain the middle of the night. My arm was swollen and it felt like I had a hundred bees stinging me from the inside.  It also felt like I had an internal sunburn.  I went straight for pain meds and after a couple of hours it subsided.

But Saturday morning it quickly began to throb again.  I used hockey for distraction but yielded to pain meds early Saturday night.  Lots of pain meds and a serious thought of having to go to the er.

The lypmh node, swollen now- in all likelihood, with cancer, impinges on a nerve that runs down the inside of my arm.  When that nerve gets pinched- its one of the most gut- wrenching pains I've ever felt.

I stayed home from the Saturday night game.  And I begged Rick not to leave me Sunday and take Nolan out of town.  I was prepared to go to the er for help.  

Miraculously, the pain subsided Sunday morning.  I was able to use Advil the rest of the day and detox from the Oxy- yuck- that stuff works but sure makes the rest of me feel horrible.  

I have infusion tomorrow for herceptin, and then 1 week from tomorrow I will see Dr. P.  I've moved past the not knowing.  We have a big last week of hockey and I am going to enjoy it as much as I can.

Thank you all for your continued prayers!  I think they work in so many ways, in so many days~ I am deeply humbled.    

Friday, February 22, 2013

She is...

(Thank you for the beautiful cards Nancy and Susan, and the letter and quote that resonated so deeply with me, Nancy)

The call came Tuesday.  I was surprised to see the clinic number pop up on the screen of my phone.  Less than 24 hours after the scan, someone was calling.  I was further surprised to hear the voice of Dr. Panwalkar's nurse, Andrea, on the other end.  We got past the pleasantries and she took a big breath and in one big exhale said. "Dr. Panwalkar wanted me to call you.  He said you can stop taking your Tamoxifen."  

And I wait, holding my breath in the pause of her voice, steadying myself for the rest of the message.  But nothing is forthcoming and now my mind steps up.  

"Okay... is Dr. P going to call me?   About the results of my test?"

"Actually," she says very hurriedly, "he'd like to see you when he gets back from vacation to talk about treatment options and wants to know if 945 am on March 5th will work?"

I'm rushing now, to see the calendar, because nothing is adding up and maybe some sense will return if I see the solidity of the dates.

But no, my hands shake as I flip the page of the calendar and realize, he doesn't want to see me for TWO WEEKS.  

"Wait, what?"  I stammer, "he isn't going to call me?" 

"No,"  she says, and her voice is now as hesitant and uncertain as mine.

She mutters, "I knew you were going to ask, and I even told him, and he just said "She will know what I mean because I am taking her off the Tamoxifen.  She'll know."

"But, can you just tell me..."  Another big sigh, and she is searching for words...

And I hear how hard this is for Andrea in her voice and suddenly I know I need to not question her anymore.  She is just the reluctant messenger of a big message that both will speak volumes, and not say very much at all, at the same time.

I make 6 calls to Rick, knowing he is in a meeting.  He calls me an hour later~ and I can articulate to him that I really just need to vent as I am honestly royally ticked off.  

He listens quietly as I pour out the what if's and how come's and oh no's and... and I slowly lose steam.

"What am I meant to learn?"  That is really the question, I ask him, isn't it?  

Then he quietly suggests, that maybe I just need to remember.  My history with Dr. P has been one of confidence, of trust.  That he has proven to be kind and compassionate and smart.  He wouldn't leave you"hanging" if he didn't think you'd be okay.  He trusts that you will handle this as you've always handled this.  

Superman settles me down a bit.  The voice of reason, a kryptonite to my irrational, fear mongering inner voice. 

Later Tuesday night, I glimpse the new book beckoning me from my nightstand.  It's Anne Lamott's "Help Thanks Wow," The Three Essential Prayers."  

I begin to drink in her words.  They speak to my heart, as if they were written just for me, right now.

Page 44., It is easy to thank God for life when things are going well.  But life is bigger than we give it credit for, and much of the time its harder than we would like... Sometimes our mouths sag open with exhaustion, and our souls and minds too, with defeat, and that saggy opening is what we needed all along.  Any opening leads to the chance of flow, which is sometimes the best we can hope for and a minor miracle at that, open and fascinated, instead of tense and scared and shut down...

Over these past few days, I've been processing and praying and perspective gathering.

Maybe I am still afraid of the storms, but I am learning... to sail, to stay open, to hope... to have just enough encouragement for today... and to always let gratitude prevail at the end of each day. 

(Big weekend of hockey for us- will be back with lots of hockey to share.)  

Tuesday, February 19, 2013

Catching up

“When we walk to the edge of all the light we have and take a step into the darkness of the unknown, we must believe that one of two things will happen. There will be something solid for us to stand on or we will be taught to fly.” 
― Patrick Overton

Two years ago, March 24th, 2011 I had my first PET scan.  It had been scheduled for an earlier date, but a storm had intervened and the truck carrying the dye for the scanner, could not get to town- so it was rescheduled.

We awoke yesterday with a huge ground blizzard in the works.  I couldn't help but feel a bit of deja-vu.  But nobody called from the clinic and at 1030 Rick, Colton and I headed off for the appointment.  Thank goodness for 4-wheel drive, steady hands on the steering wheel, and a firm resolve by all of us to get the scan completed.  

The part of the scan that had me the most concerned was the injection of the dye.  I've had a serious reaction to CT scan dye and wondered how I would react to the PET scan dye.  

But I think all of your prayers, helped everything run smoothly.  The tech knew me.  Her kids attend the same school as mine.  She was so warm and friendly, she put me at ease right away.  The dye isn't driven in any longer, it is now flown in and had arrived safely already.  She assured me nothing in the dye would cause me to react.  

She also told me deep sedation was not necessary, as the scanner was a CT type scanner.  Instead of an enclosed tube, it was a big donut shape- that enabled my head to remain outside of the scanner until the last 3 minutes.  Whew.  Relief flooded me instantly.

She apologized at the first failed attempt to insert the iv needle.  As she set about trying to find another vein, my phone began buzzing. After a few buzzes she asked if I needed to check it and I assured her no- its all my prayer warriors reminding me I am not in this alone.  She smiled and said the power of prayer is awesome.  She also effortlessly guided the needle into a different vein and this time it worked. We chuckled as my phone went off a few more times.  

I rested under warm blankets and reclined in the chair waiting for the dye to be taken up by my body.
The scan itself went by fairly quickly.  I was only mildly sedated and used the quiet time to meditate and pray.  

The only surprise was when I opened my eyes and a new tech was helping me up from the table.  He simply handed me my things and said it would be a few days and then my doctor would call me.  I had wanted to thank the first tech, but I assume she was busy getting the next patient ready for the scanner. 

Actually, there was one more surprise- my craving for a hamburger afterwards.  I was somewhat groggy- and still find it hard to believe I asked for McDonalds.  

I arrived safely at home, crawled in bed, and let my mind ride with the incessant buzzing of my phone, as I drifted off to sleep for the night.

Rick continues to recover from the flu.  He has been plagued by headaches and achy joints and wears out easily.  He told me maybe he got the flu to help him fully appreciate everything I go through with treatment.  

On the flip side I'm embracing my superwoman powers as I tackle the care giving role on top of parenting.  I've shoveled snow, driven boys to lots of hockey games, hauled goalie gear in and out of the rinks, helped rescue the dog trapped under the deck, and haven't felt more revitalized and capable in a long time.

I haven't been able to respond as quickly to email, and blog comments and texts.  But I assure you I have read every single one and have been encouraged and blessed by each of you!

Wednesday, February 13, 2013

hope tote... breast friends...

A couple of months ago I finally started attending a breast cancer support group here in Moorhead.  It was started by two survivors, a few years ago, and this group does a lot of support, outreach, fundraising, etc., for survivors, and newly diagnosed.  They meet once a month in the basement of the Moorhead Library.  

Steph, one of the 5th grade teachers at my sons elementary school, introduced me to the "Breast Friends" group and she has continued to be an invaluable form of support to me from early on.

So I was giddy when she sent a "Hope Tote," home from school with Colton, a couple of weeks ago.  There is just a small sample of the goodies down below.  

I owe this group of women a lot of gratitude.  They have given of their time and talents, tirelessly, to benefits in my honor, as well as to many others struggling to both survive and pay for treatment. These warrior women tackle the tough and the hard, with a great deal of humor and grace.  I am hopeful to grow in knowing them all more, and truly becoming more like them.  

Thank you Steph- for your friendship and support and the gift of sista-hood with so many beautiful survivors!  

The group was saddened recently by their first loss of a treasured sister.  Those of you local, have probably heard of the amazing story of Diane Marthaler, more affectionately known as "Toot."  She recently entered her heavenly home, but has left behind a rich legacy of faith, and the ability of an indomitable spirit to touch a massive amount of people.  If you ever want to read an epic story of faith, love, laughter and living with stage iv breast cancer- than Toot's caring bridge site won't let you down.  

I even have my own little "Toot" story.  I've never met Toot, but in reading her journey, through the eyes of her husband, I certainly have a good idea of who she was... she has left some big shoes to fill- pink sneakers to be exact.

It was a grey and gloomy day- another in a string of days that swirled together.  I was feeling the "Toot" sized hole so many had described in grieving her loss.  But there is a triumphant quality to Toot's story.  In fact, she was adamant about having a "celebration" of life after her funeral.  

I was driving home from treatment, and was waiting on a call back from doctor, having just discovered my new lump. I was thinking about how I hate the term "lose" when it comes to cancer.  Great warriors such as Toot, in my opinion, don't really lose their battles- because if they do- cancer wins.  My thoughts wandered as I pulled to a stop.  And then two things happened simultaneously:  The clouds parted revealing the sun, and my mind flashed "God wins..."  If Toot's life taught me anything, its that God wins, not cancer.  For a brilliant moment or two, the sun streaked through the clouds, illuminating the ground up in front of the car.  I had to laugh- "nice to meet you Toot. Is my friend Gitz standing right next to you?" In mere seconds, the sun vanished.  But the internal lightness I felt, couldn't be touched.  The Martha Beck quote above couldn't have summed it up any better.

In other news... Rick seems to have the flu.  In 15 years of marriage I have not known him to ever stay in bed.  For two days now he has lingered in bed, with chills, fever, cough, and cold symptoms.  And yes- I am staying as far away as possible.

I heard today from Roger Maris yesterday, and my PET scan is scheduled for 12:45 on Monday the 18th.   

Beautiful notes, cards, comments and emails continue to buoy and support me.  You are all heard, felt, seen... and I'm deeply grateful and honored. 

Love to you all ~

Thursday, February 7, 2013

just keep swimming

It's late Sunday night when I go to change the dressing over my wound.  I'm pleasantly surprised to see some small scabs forming in the center of the wound.  I get a fresh piece of mesh to lay over the top of it, and start to smooth the edges of the Mepilex onto my skin.  Except, in the corner, its not smooth.  

What the heck?  Did I turn the edge of the bandage under by accident.  I'm not even watching with my eyes, my fingers accustomed to the landscape of my misshaped chest. 

I look now, running my fingers over the corner again and notice the bandage is smooth.

But my skin is not.

Directly above the corner of my bandage... is a lump.

My fingers frantically fly across the contour of it, over and over again.  

Is this just "scare" tissue?  You know, the remnants of a scar that "scare" you when you first encounter it?  Or is this a cyst perhaps?  Some swelling?

I call for Superman to check.  Without much in the way of navigation from me, his thick fingers deftly go right to the same spot.  He feels it too.  

There isn't much more to be said.  I assure him I will notify the nurse at infusion.

Its late. 

Grandpa Jim has put clean sheets on our bed and I am thankful for that kindness as I sink into my own bed.  

I've always known that old mastectomy site that refuses to completely heal, must serve some greater purpose that I am unaware of.

Tonight it seems, its caused me to find a lump.

Its Tuesday, at infusion when I address the lump with my nurse.  She too finds the lump instantly.  Its almost a relief that I'm not just making it up in my head.  She makes note of it for Dr. Panwalkar.

Later, Dr. P's nurse, Andrea calls.

They would like to see me.  The earliest Dr. Panwalkar can see me is in two weeks.  But I can see his PA, Erin, the next day.

I busy myself.  I'm not really here, nor there.  

Erin gets down to business right away and thoroughly examines me.  As she feels for the lump, I ask, "do you think it could be a swollen lymph node?"  No, I really don't think it could be in this area, she says.  I ask what the next steps may be.  Ultrasound, she says, maybe with biopsy or mammogram.  Or CT scan perhaps?  She doesn't really know. But she'll need Dr. Panwalkar's assessment first.

In mere seconds he is popping his head through the door.  There is no big greeting, no handshake.  But concern crowds his voice and corners his eyes when he talks.  He is soft spoken and sparse with his words. "This is new?  All of a sudden?" 

Yes. I reply.

He quickly finds the spot and probes all the way around it.  I decide to ask if he thinks it might be a lymph node.  His eye brows shoot up a bit, and he looks at me again and says "yes, I do think it could be a lymph node."

Has your new insurance kicked in?  Yes I reply- a little surprised he remembers that tidbit.  

PET, he says, We'll scan.

I don't remember his quick exit.

I am left sitting and pondering his choice.  It slowly occurs to me.  Its not the lump he is most concerned with right now.  He wants a broader view, to see what else might be amiss.

Erin concludes the visit.

We are awaiting insurance approval to schedule the PET scan. 

Dory:"Hey Mr. Grumpy Gills... When life gets you down do you wanna know what you gotta do?" Marlin:"I don't wanna know what you gotta do." Dory:"Just keep swimming. Just keep swimming. Just keep swimming, swimming, swimming. What do we do? We swim, swim." Marlin:"Dory, no singing." Dory:"Ha, ha, ha, ha, ho. I love to swim. When you want to swim you want to swim." Marlin:"See I'm gonna get stuck now with that song... Now it's in my head!" Dory:"Sorry."

I'll keep swimmimg... will you keep swimming with me too?

Monday, February 4, 2013

Insta- weekend

Our weekend got off to a wee bit of a teeth-clenching, white knuckle driving, car-sliding start.  Uff da!  The snow had started to blow by the time we left town on Friday and visibility was reduced because of it.  Plus the roads became slippery and combined with the cold and the wind and the snow- hazardous sums it up well.  We counted... 15... no exaggeration... 15 cars that either slid off the road into the ditch or were in an accident with another car.  We thankfully only saw one ambulance.  But there was a trail of some severely wrecked cars!  

We took it slow and it made for a long and tedious drive, but we made it to the cities fine.  

And here is where I'd love to tell you what an awesome weekend of hockey we had... but we didn't really fare very well at all.  I think its safe to say we had a lot of fun, and memories were made- just maybe not on the ice-unless you want to talk about how cold it was.  I've been to some cold rinks- including our own North rink.  But that rink was the coldest I've ever experienced and none of us will soon forget.

We decided to stock up on some groceries instead of eating out and loved finding this Trader Joe's.  I have always wanted to go and could have been lost in there for hours.  Loved the organic and natural food choices! Colton was even adventurous and ate an apple-pear.  He loved it and now we will try to find them here.

I had hoped for more photos, but it was literally too cold for me to want to try.  Gigi even had to put on her parka and bundled up in an extra blanket to go inside the rink to watch.  Did you notice Gigi's orange/pink nails and hockey stick collar?  She may have been our biggest (um, littlest?) fan! 

Infusion tomorrow- and hopefully news of a treatment plan for my arm.  

Friday, February 1, 2013


Our wake-up calls continue to come early and 630 am hockey practice means a 515 alarm.  Nolan needs money put in his lunch account and what time will Grandpa come to be with him today?  I  mumble an answer through squinting eyes, letting the pull of sleep keep me from moving.

Suddenly the radio blasts as my own alarm signals its time now for me to get up too.  I head to Colton's room to wake him from his slumber as I stumble through the dark to the kitchen to start the coffee.

Colton heads up the stairs, fresh from his shower, as I pour the first steaming cup of joe.  We hurry through his spelling list one last time then begin bundling up for the bus stop.  He doesn't resist when I go to tie a scarf around his mouth, covering his nose til only a slit of his eyes are showing.  Its minus 23 outside.  Yes, that's right, 23 degrees below zero and cold doesn't really begin to describe it.

I send my little off across the street and watch to be sure he gets on the bus when it arrives shortly thereafter.  I turn to refill my coffee cup and notice the sun rising.  I grab my camera and stand just long enough with the front door open to rapidly fire off a few shots.  The dog isn't even tempted by the open door to move from his spot by the heat register.  

The sun rises brilliantly and then settles behind the same grey clouds its been keeping company with for some time.  The clouds open up and snow begins to fall blanketing everything with a fresh layer of crisp white.  But no matter... the sun was peeking out today and Colton didn't leave for the school bus in the dark.  I hurry off to pack my bags for our big hockey weekend in the cities and smile at the way the light broke through the clouds, if only for a moment.

When you get lucky

When you get lucky

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