Friday, August 31, 2012

"Life preservers"

I sat looking at her photo of marriage dissolution papers.  Stage IV cancer rears its ugly head again.  She is splitting from her husband in the hopes of not bankrupting her family.  With her kids about to go away to college, the fact that they may have to lose both their mom and their college funding, was more than she could take.  She is clearly in survival mode, stripping herself bare, in the hopes of more tomorrows.

I wish I could say I can't imagine what that looks like.  How she must feel.  On the surface she looks brave, fearless, inspiring.  But I know... her back is against the wall and she simply has no other choice.    We don't walk this path by choice.  We yield.  We surrender.  We're afraid, hurt and completely aware of the precariousness of it all.  I wish I could say I have no idea what that feels like...


But the truth is, I do.  Cancer is so enormous, it takes over you whole life, not just your whole body.  Nothing is sacred.  Nothing is left untouched.

marriages...

homes...

jobs...

lives...

all at risk of being lost...

*****************************************************************************

But this is how I am rescued.


I arrived at the Iverson's house last night.  The Vicky Westra Benefit team was putting together silent auction items.  And there spread out all across the basement were my "life preservers."  Each and every item, a reflection of someone who has been touched by cancer.  The generosity on display brings me to tears and I am quiet, trying to take it all in.

I witness the devotion, the team work, the generosity of Heather and Dave, Brenda and Steve, Laura and Eric and so many others behind the scene that I have yet to fully comprehend. Gratitude unexpressed lodges in my throat, words seeming inadequate to the magnitude of the feelings I have.

I am moved beyond words.

The newest breast cancer drug on the market is Pertuzumab, called Perjeta.  A loading dose of the drug is 22,000 dollars.  Its infused once every three weeks.  The maintenance doses are 11,000 dollars. The drug has shown significant ability to increase long term survival  Insurance companies however, are categorically denying coverage for the drug.  You can "max out a life" trying to cover the costs on your own.  You can lose a life by deciding it isn't worth the cost.

Having a decent health insurance policy, like we have, doesn't ensure you are covered.  A 2 million dollar cancer benefit feels like enough- but when ct scans, mri's, bone scans, PET scans, mental health visits, oral chemos, prescription drugs, outpatient services (ahem, like your referral to a plastic surgeon for a non healing wound) are all excluded from your policy?  You can literally drown in bills.

We fight more than just the disease of cancer.



And that is where the "community" at large comes into play.  That saying "It takes a village to raise a child..."  "It takes a community to help a family fight against cancer."  I've said it a hundred times, and I'll keep saying it till I'm blue in the face- this is the most generous, giving, thoughtful community ever.  From my family to my blogging friends, to our hockey friends, to my cancer sistas, to our church communitites to our neighbors, and shoot- I know I will leave someone out...  but we would be obliterated if it weren't for all of you.

That is why...

Each basket, each item, each gift certificate snakes around the basement, forming a chain of survival.  A chain of hope.  A battle won for our family.  Our future stretches out before us, wrapped in love, generously given by so many.  But not just our family- every family seeking shelter from the damages of the hurricane of cancer.

I feel abundantly blessed, wrapped in His grace and His mercy and so loved.  So, so loved.  Amen.


****************************************************************************

I started with a couple of photos- but quickly realized I wanted to capture everything!  If you are a Twins fan- TC put together a donation from his stash of memorabilia!  This is just two of a box full of items!  Joe Mauer anyone?








Are you an old school Twins fan? Kirby Puckett anyone?  





A purse from the boutique of Vi who I bought my wig from.  So cute! 




massages
hair care- highlights, cuts, styles- products...
beautiful jewelry
toys, toys, and lots of toys- Bakugan, hot wheels, Xbox games, etc...
John Deere toys
wine baskets
hotel packages
a casino package
all things hockey!  Blue line camp, Sanford treadmill sessions,  FP3 summer session, to hmmm... maybe something a little "Wild?"  Maybe something very Wild! 




Stay tuned... its just getting started... 









Thursday, August 30, 2012

bending...


Blessed are the hearts that can bend; they shall never be broken.
Albert Camus



Its out of the blue that Nolan asks me something about Grandma Carole.  

Mom, if they could have gotten Grandma to eat or drink something, would she have lived?

I feel the dull thud of my heart as I realize he thinks she starved.  

No, Nolan.  She didn't starve... she... I falter...

And this is when my astute youngest child intercepts.... paging Dr. Colton

Nolan, she was just too unstable.  They wanted to do a scan to find out what was wrong, but she was too unstable to be moved.  

I realize his ten year old brain heard way more in that room than it ought to have...

Oh, Nolan says, I get it...

But I wonder if he does.  

I'm not sure any of us do.  

We are just trying to bend.


We're filling up the empty spaces with activity.  We baked zucchini muffins and bread.  I cringe as I hand Colton the grater for the zucchini.  But the time to learn is now, not later.  Urgency for the boys to know everything I can teach them haunts me daily.  I swallow my need to protect him from scraping his knuckles too, knowing his heart is already bruised.  

I'm learning there is little I can do to protect them from the hard and the messy.





Nolan insists he can use the electric knife.  As the knife clatters against the glass of the bowl he is using, again, my nerves fray and I want to steady his hand, and grab the knife away.  But I don't.  He is determined to learn.  His sense of accomplishment evident as he lines up the bags ready for the freezer.







This summer, he ventures away from us a little more.  He accepts the invitation when his friends ask him to sleep over.  He hugs me tightly promising he'll return the next day and it won't hardly feel like we've been apart at all.  He admits the next day he laid awake for a long time, not being able to fall asleep.  But he managed.  He relied on himself.  


He is bending.  We are all bending... 



Sunday, August 26, 2012

gathering and scattering...


I have such a whirling cloud of emotions hovering these last few weeks.  We've been tossed through the cycle, suffering through loss while still having moments of triumph and peace in between.

My back is no worse, and not much better.  But I have figured out how to navigate fairly well.  And I have loved having you all celebrate with me- "its not cancer" is perhaps the most magical thing I've heard in a long time.

It probably goes without saying... our "trip" has been postponed yet again.  But rather than feel too sad about it, it just keeps us dreaming and ever more determined to make something happen.  I am convinced we will go... we just will...

I found myself inspired by this t-shirt arriving in my mail box yesterday.  With all of the "Westra Family Benefit" planning taking place- this quote resonates deeply with me.



Amen- so encouraged and inspired by all of the volunteers signing up to help at the benefit and all of those who have said they're attending.  Some exciting news surrounding both the benefit itself and the days leading up to it... more to come...

Here is a sign up sheet for anyone else interested in helping out: Westra Benefit Sign-up Sheet.  


 Karen @ This Old House II, helps organize and run dog adoption events in her community. To help raise funds she created this t-shirt and I simply wanted to "Pay-it-Forward."  Karen and her friends help match rescue dogs with forever families!  Her posts about the event make me want to adopt every stinkin dog... but Crosby has us about maxed out in the dog department.  So sending a small donation was a no brainer.  






I've also been inspired by the work of my friend Kristin.  She and her husband started a blanket ministry for the homeless in her area.  Again- the cost of donating and mailing a blanket of my own didn't make sense.  But I could send her some money to purchase a blanket or perhaps two.  Look through her photos and see the difference she is making and you'll be inspired too. 



My Gitz handcrafted canvas helps keep me in check.  It seems to be our season to "gather," but truly it makes me look harder for what I have to "scatter." 




This is the new Bloom Book Club book and I picked it up when Dayspring announced it was on sale with free shipping.  It has a straightforward premise that we live in a society of excess.  The author decides to challenge herself and her family to 7 different areas in which they will reduce, reuse, rethink, etc.  

The first chapter is where she decides to eat just 7 foods for 4 weeks straight.  Chicken, spinach, sweet potatoes, whole wheat bread, water, apples, and eggs.  She gives an honest and often hilarious account of both her successes and her failures.  I've just started, but sure have had some kernels of truth lodge firmly in my gut.  More scattering planned.  




What are you reading these days?  Books?  Blogs? I'd love to hear who is inspiring you right now? 

































Wednesday, August 22, 2012

"rain of grace"



Like when your nurse calls and says...

"Dr. Panwalkar doesn't see anything worrisome for cancer in your back!"  

"It looks like you have a bulging disc..."

I've never been so happy to hear I have a bulging disc!  

She said "rest, take Advil, use heat or cold,  and it should heal in a few weeks time."  



And then that really little voice in my head went "whew, and you get to keep your hair for awhile longer too."  


“When we lay the soil of our hard lives open to the rain of grace and let joy penetrate our cracked and dry places, let joy soak into our broken skin and deep crevices, life grows. How can this not be the best thing for the world? For us?” 
― Ann VoskampOne Thousand Gifts: A Dare to Live Fully Right Where You Are

A Benefit and an update




She came to my door last spring in tears, wanting to talk.  She'd been faithfully praying for God to help her find a way to help us.  As an RN (currently the Charge Nurse) in the Radiation Department at Roger Maris, Heather already saw me through both radiation to my brain and spine.  Plus, she has been a friend since way back, above all else, and is a hockey mom just like me.

So the answer she sought came to her as they were driving back from the cities.  But she just needed her husband to be on board.  Not only did he like her idea- he fully embraced it.  For 4 hours they drove and talked, their ideas taking flight.

She sat at our kitchen table and poured out her story and there wasn't a dry eye left when she finished.  To say we are humbled and honored, well it doesn't begin to tell you how we feel.  The urge to say no was strong.  How could we go to our very same friends and ask again?  Its hard to swallow.

But how could I look a faithful and true sister in Christ in the eye and tell her no?  What if this isn't just about me?  If I truly believe in God's plan, and am surrendered to his will, what greater good might be served?

So we are humbly and graciously going stepping forward in faith again.  We also requested that a donation be given back to our hockey program.  The Tobolt lease program allows all of our beginning hockey players to "lease" equipment for a nominal fee of 50 dollars.  When they are finished with it at the end of the season they turn it in and get their 50 dollars refunded.  We would love to be able to help them purchase some new equipment!

My radiation oncologist, Dr. Ethan Foster is coming to play the piano.  As if being a board certified radiation oncologist weren't awesome enough- he is a concert pianist and wanted to help- and he plays hockey too.

It is rumored that some Moorhead Spuds, Concordia Cobbers and Fargo Force players will be on hand...

And, there was a brief mention made- that Dr. Panwalkar had said he would come.... so all of you who have wanted to know who he is- just may get that chance...

So Saturday September 8th there will be food, games galore, a dunk tank, ballon animals, hockey, open skating, the band Catalyst will play starting at 8- and there will be a bar for adult beverages.  Sounds like a party to me!

The part I hadn't anticipated, is how much having things like this to look forward to, keep me going.  I have an additional incentive to stay strong- to be well- to fight.


***************************************************************************
I finally figured out how to get ahead of the pain.  I dose regularly with Advil and its been enough to keep me comfortable.  And honestly, Saturday was the worst pain day, and when you all interceded on my behalf and the prayers were flowing?  Well I awoke with a renewed sense of energy and decreased pain after an amazing night of sleep.  So grateful to all of you! "Draw nearer," is what I heard Him say, and my eyes have been firmly fixed.

I'm a bit groggy today- but I made it.  I have some big thank you's to say.  Nikki for taking Nolan to orientation and successfully navigating the long list of things the boys needed.  Susan took the boys golfing, and later had Nolan over- I know Dairy Queen was involved so all was good in his world.  Darla brought me to the hospital and picked me up afterwards.  She also brought Crosby home for me.  And Grandma entertained Colton all day.  Not once was I worried about who, or where, what, or when.  My "angels" have more than earned their wings in my book.

My MRI was only 30 minutes long and although I wasn't asleep like usual when they came for me, I was able to make it through just fine.  Now I wait.  But I feel at peace.











Saturday, August 18, 2012

Too much

I can't pinpoint the exact day.  At first I blamed it on the new shoes and the long hours spent on my feet.  I remember the night I spent dress shopping for the funeral and the sudden inability to lift and carry a stack of dresses I wanted to try on.  Finding a dress on sale for 16 dollars assuaged any discomfort I had.  Besides, we were all clearly grieving and I had no doubt every ache and pain could be chalked up to our deep sense of loss.

But last week the ache grew more pronounced in my back.  I favored my blue chair again, pressing my spine into the sturdy back, willing relief to flood over me.  I started taking a couple of advil, and the edge wore off, but the dull throbbing returned quickly.

Yesterday, I made it till 10 am before pushing the shopping cart at Target became more than I bargained for.  With pain now burning- stinging between my shoulder blades, the boys grabbed the last of their school supplies as I fumbled through my purse for Dr. Panwalkar's number.

My call was directed to a nurse who assessed the situation.

Did I injure my back somehow?  No, not that I can recall.

Was I in pain when I performed activity?  Yes.  But no amount of sitting still was helping me either.

After a few more questions she agreed to run my symptoms past Dr. Panwalkar.

Moments later she called me back.

Dr. Panwalkar would like for you to have an MRI.  Have you had one before?

I bite my tongue as I assure her I have.  But when I mention sedation, she draws a blank.  Sigh...

3 more calls ensue.  Its Friday, almost 5:30 when Dr. Panwalkar's nurse calls to inform me the Monday appointment they gave me does not include sedation.

Whether its the pain I can't quite get under control or the frazzled nerves that go along with it, I'm near tears when they tell me I'm re-scheduled for Tuesday at 2 pm.

I have infusion at 8:30 that morning for 1 1/2 hours then sedation beginning at 1:00 pm.  They assure me I should have enough time in between.

But what they don't know, is that its Nolan's orientation day for middle school, and Rick will be out of town all week.

Logically, I know my friends will come through.  I know we will manage fine.  But the tears fall anyway, knowing sometimes it just feels like too much.

I opt for pain medication and snuggle in for the night with the dog... reminded some things remain just right.



Monday, August 13, 2012

Remembering Carole

My father-in-law asks for a little help- Can I please look in Carole's purse and find her lipstick for the funeral home?  I will of course do whatever I can to help.  But its such a private act, an intimate representation of her, and I fight the feelings that I don't belong looking through her things.  Everything has changed.

My sister-in-law and I rummage through jewelry, clothes, make up.  We know how she'd want to look. At least we hope we are getting it right.  We ask that they put pink socks on her feet, because she never likes to have her feet bare.  And I find one of my gold rings to fit on her hand, not wanting her fingers to lie bare either.  Its for her our comfort as its the last things we feel we can do for her.

I go to put extra water in the coffee maker and just stop myself before dumping it in... I always make a little extra when Carole is staying with us.  There is no more need for extra.  The normal amount of water in the coffee maker now looks stark, and extremely inadequate.  Our cups feel so barren, so empty.

When we struggle with the spelling of her mother's name it seems we should just turn around and ask her... but we can't.  We eventually figure it out.  But the reminders of her not being here with us come at us faster than we can absorb sometimes.

Plus, how can it really be that she is gone?


Our house floods with food, family, friends, tears and laughter.  Everyone wants to know, "How can this be?  What happened?" We shake our heads from side to side, no words adequate to express what we simply don't know.  She was with us one day and gone the next.  And what remains is forever without her and trying to find ourselves again as the waves continue to crash over us.



These are a selection of the photos we used at the memorial service and I thought I'd share for the ones not able to attend the services.





Jim and Carole with Rick and Missy... the birth of Matt would follow a few years later.


Gunnar, Missy's son was the first grandchild. 




Carole with Gunnar and Hunter.  Hunter passed away at the age of 4 months in 2001.  


Carole with Nolan


Carole with Nolan and Colton


Carole with Matt's oldest, Mackenzie.


Jim and Carole with Matt and Julie, Mackenzie and Ethan.







****************************************************************************



On a complete whim, the week before last, I walked into a salon and asked for all of my chemo-curls to be taken off. I feel naked and free all at the same time.




My mother to your left and her two sisters on the outside.  When I was growing up they so often were told they looked like Carol Burnett.  At the visitation, with my newly shorn hair, someone told me I looked like Carol Burnett...  hmmmm... I'll have to practice my ear tug perhaps? 



When we discovered where Carole was going to be buried it was a full circle moment for us.  She was laid to rest next to her grandson Hunter.  And just a few yards away?  Is my Dad, and both my grandparents.  







This heart-on-his-sleeve boy of mine wears his sadness.  As we prepared to leave the visitation Thursday night, he went to Carole with his Grandpa.  He walked away, alone, with huge crocodile tears sliding down his cheeks.  I asked if he was okay and he nodded... 


"Just saying goodbye," he said. I broke wide open right there. 


Tuesday, August 7, 2012

the unexpected loss

I've been wrestling with the proper way, the proper time, perhaps, the proper place to share the news.  But there isn't anything proper about it.

Rick's mom, Carole, passed away unexpectedly yesterday morning.  She hadn't been feeling well and was brought into the emergency room at Sanford, early Sunday morning.  We went and visited her Sunday afternoon, but she was medicated for the abdominal pain she felt and she clearly needed rest. We knew they suspected an infection and her blood work suggested her immune system was very low. Her kidneys were also not working.  She looked sick, but we've seen her come back from sick many times before.

Shortly before 6 am yesterday morning the phone rang.  We had a horrible night of sleep.  The dog was up several times wanting to go outside. Nolan was up several times complaining of nightmares and finally crashed on the floor by our bed.  The sound of the phone jolted us all awake.  It was Rick's Dad Jim saying we needed to come to the hospital.

I felt sick to my stomach as I ran around collecting the boys and the dog.

It was Nolan who rallied me saying "you know how positive Grandma is, mom, we just need to have hope."

We entered the intensive care unit about the time the code blue was announced.  Her room was flooded with people... it was way too much for our boys to take in and we hurried to shelter them.  Hope couldn't save us this day.  Our beloved mother (my mother-in-law), could not come back to us this time.  My husband was brave and summoned all the love he felt, and knowing his mother's wishes, he made sure they were carried out when the doctor's asked for his guidance.

We are devastated.  Too soon, too quick, too much.  We stumbled through the day in a dream like fog of loss and mourning, with the waves of grief crashing over us as we waded through the details of planning her funeral.




The visitation will be from 5-7pm pm Thursday evening at Wright Funeral Home.  The funeral will be at 11:00 am Friday morning at Grace United Methodist Church.

We've received an outpouring of love and prayers and are humbled and appreciative of it all.


Wednesday, August 1, 2012

practicing... and a side of news



I arrived at Roger Maris yesterday sans caffeine and breakfast per orders for my lab test, with a headache beginning to nag.  I was relieved I didn't have to wait too long before they drew the final vial of blood for the cholesterol panel.  Hello coffee and advil- breakfast of champions.  Oh and pancakes, because the ones they make at the cafeteria aren't half bad.

I was then surprised to get a visit from Kathy my research nurse.  6 months after completion of the study I was on for tdm1, the study would like one last pregnancy test.  She arranges for me to go back to the lab after infusion.

I sit tapping my foot in the exam room, waiting for Dr. P to arrive.  His footsteps are quiet and he is in the doorway before I know it.  He breaks into a huge smile and says- "Seems like forever since I've seen you!"  It does.

He tells me everything takes him longer on the new Epic medical chart system, so just bear with him as he clicks through all the screens.  (What normally takes me about 2 1/2 hours for a complete visit, takes 5 hours yesterday.)

He then prints out my lab results and swings around to face me. I visibly suck in air...  he goes down the list in order.  My WBC is still low, not unexpected even 2 months out from chemo.  My platelets are also still low.  But they have climbed some.

He then breaks formality, and I am reminded of the parts I love about him.  In mid sentence he stops and leans closer "Is that your hair?  No? Really? I can't tell, you really look good."  His sincerity makes me blush.

My cholesterol it turns out, is high. Just a few points above where normal should be.  And my heart rate- "off to the races as always."  He mentions the possibility of two things- the addition of two prescriptions- one to lower my cholesterol and one to lower my heart rate.  But we'll watch and wait for now.

And then we get to the very bottom of the list.  My CA 27.29- my tumor markers.  To be considered in the normal range they would need to fall below 38.  Mine are 41.  BUT, they were 44.  Smile.

I'm still stable.  Not free of cancer, its lurking in there somewhere.  But, it doesn't appear to be growing right now.  Whew.  I feel God's steadying hand on my shoulder.  All shall be well.

I get a thorough exam from Dr. Panwalkar- his fingers deftly examine every possible lymph node and he finds nothing.

Dr. Panwalkar almost sounds surprised as well.  He keeps asking if I am sure and if anything at all is different. I walk in once every few weeks wondering what cancer will do.  He walks in once every hour wondering and often knowing what cancer will do.  My gratitude for what he does knows no bounds.

"Good new, bad news he says. Good news, you don't have to come see me for two more months.  Bad news, we don't get to see you for two more months!"

Lots of people ask me this all the time- I will try to explain about the treatment I am still doing that is helping to keep me stable.

I will continue on getting Herceptin infusions once every three weeks.  Herceptin targets only bad cells, and leaves the healthy ones alone.  I will also continue on my Tamoxifen hormonal treatment-one pill daily by mouth.  Tamoxifen shuts down my estrogen- estrogen feeds my tumors.  I now have hot flahses, night sweats, and do not sleep as well at night.  Trade offs I am willing to take on.

But I will remain on break from the chemo that ends up destroying both healthy and bad cells.  I will also not have blood work or doctor visits during this time.

So... what we WILL be doing is trying to plan a trip... yep, THE trip.  More to follow...




When you get lucky

When you get lucky

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