Friday, May 31, 2013

"slowly, then all at once."



I haven't kept track of how many rainy days we've had in a row.  The other night the rain poured pummeling the sides of the house as the sharp cracccckkk of thunder pierced the night air.  I love a good storm.  But this one just wages on.  Its humid and dark and cloudy again today, and oh sure, sunshine is in the forecast- um, on Sunday.

So I'm still sorting and cleaning and discovering stuff.  I'm a bit nostalgic.  Like the picture above.  I grew my hair out before we got married- you know- so I could wear it "up" for the wedding.    So this was about 16 years ago.  At a time when the two hours it took to do my hair, wasn't a big deal. Who is that girl anyways?  I find bits of her in the things I'm discovering stashed in drawers, tucked into corners, buried in boxes.  She was a newly wed with the world at her feet and couldn't possibly envision the twists and turns coming her way...  or the grace that would catch her each and every time.

I've changed so...  me today with my hairstyle that the boys refer to as a "bush."  I'm thinking more chia-pet, as it sort of wants to grow out at the sides instead of down.  Its about 5 minutes of work- start to finish.  But hey- its hair! And thick?  And healthy?  Ridiculously so.  Miraculously so.  I may not look the same, but this woman knows grace finds her every day amongst those twists and turns she now calls, "life."





Lately, I've also spent time reading.  I picked this up after a friend dropped it off:  




She warned me it was about teenagers, and cancer.  That it was sad, dark and comedic.  So I tiptoed through the first few pages and then was launched into a free fall of reading in which I couldn't tear myself away.  

Sort of like this quote...


 “As he read, I fell in love the way you fall asleep: slowly, and then all at once.” 


The prose is clever and witty, touching, and rings true- the lessons are everywhere and apply so aptly to this thing called life.   True, its a sad book, but I'd say its so well done, that I wasn't left feeling bad when I finished- more honored to have peeked inside the lives of the characters.



“One swing set, well worn but structurally sound, seeks new home. Make memories with your kid or kids so that someday he or she or they will look into the backyard and feel the ache of sentimentality as desperately as I did this afternoon. It's all fragile and fleeting, dear reader, but with this swing set, your child(ren) will be introduced to the ups and downs of human life gently and safely, and may also learn the most important lesson of all: No matter how hard you kick, no matter how high you get, you can't go all the way around.” 
― John GreenThe Fault in Our Stars

"No matter how hard you kick, no matter how high you get, you can't go all the way around."  Amen.


I have an hour long mri on Monday, followed by a radiation education appointment, and then a trip to the CT scan/ PET scan to make a new mask and perform radiation sims.  I will be trying a new oral sedation and pray it keeps me "unconscious," to most of what will be happening.

Jesus Calling for today:

The Peace that I give you transcends your intellect. When most of your mental energy goes into efforts to figure things out, you are unable to receive this glorious gift...

Be still in my presence, inviting me to control your thoughts.  Let My light soak into your mind and heart, until you are aglow with My very Being.  This is the most effective way to receive My Peace.






Tuesday, May 28, 2013

To Dad... love Snicklefritz

Dear Dad, 

I'm growing ever more fond of your resting place.  Despite the gray and gloomy day, the colors were all the more brilliant to witness yesterday.  It would have been your 47th wedding anniversary, and mom wanted to come and visit.  She brought a walker for the first time Dad.  Your old walker, that she now needs.  I can just see the smirk on your face as she rolled past you- she is walking in those footsteps you left behind, the ones she used to tease you for.  But she is one determined lady, and that would not surprise you in the slightest.  Oh how we change and stay the same all at once.  

Still, Dad, to this very day, I drive past the house, with your truck sitting outside and my heart still leaps... briefly.  Momentarily I can close my eyes and think of how little the boys were when we lived in that little blue house and how you used to surprise visit us at nap time.  You'd rile the boys up, tickle and play with them for a few minutes, then be on your way, while I sat with whirling tornados of energy, sadly in need of a nap- me by that time- worse than them.  

The boys are now at an age where they laugh about how much they loved your old truck and riding in it with you.  They see it more for the old age, the lack of features- or anything flashy.  I now see it as sturdy, dependable, with a few battle scars- but a will to just keep going.  Much like how I remember you Dad.  

Miss you Dad,

Love, 

Your Snicklefritz


































Rick and I both have family at this cemetery.  My nephew, Hunter who passed after just 4 short months with us, and now Rick's mom, Carole in the spot just above Hunter.  This was the first time we viewed her marker and I have to say its beautiful.  






My sweet sister-in-law, came to visit Friday night.  Look what she brought me!  

I have oogled Origami Owl for some time now.  It is slowly starting to make its way into our community. 

But what are the chances that Missy would know my heart so well?  



So the necklace is like a locket and inside are magnetized pieces selected by Missy.  There is the pink breast cancer ribbon, a C for Colton, an N for Nolan, a camera and a red heart. There is also an S that baffled us for awhile.  But clearly, the S is for Superman-  how could he be thought of as anything other?  She also had the word "inspire" engraved on the inside of the locket.  Then she wrote a special note giving her reasons for selecting each one.  Then I cried and was moved.  Love that girl.  



I'm heading out for a PET scan today.  The radiation department is working on getting me scheduled for tests and sims before I have treatment to my brain.  

Uff-da... here we go...




Thursday, May 23, 2013

When it gushes

Joining Heather today at The Extraordinary Ordinary for the 86th installment of Just Write:  

As usual this comes from a vulnerable place, but please know I am well.  This is merely a snippet of a few hard moments in an overall day of healing and rest...  

Just Write...

Its after his bedtime when the sump pump goes out.  Its Colton who figures it out.  Its nearly 10 o'clock and he gets up telling us how the whir-whir sound downstairs doesn't ever stop- the rhythmic gush and release just goes on and on and how can one sleep when there is no end to the gush?

Because its true, and he's right, we're gushing these days and no end is in sight.  

Its Superman who goes downstairs and manually releases the pump to expel the water, turning it on and off, throughout the darkest hours of the night.  

We drift in and out of sleep, our ears listening for the faintest signal that a deluge is coming and we won't be able to bail fast enough. 

Its early when I am jolted from sleep by a frantic Colton who has his first day of school patrol.  Nausea washes over me and a slow steady throb erupts in my head.  

 Superman is leaving for out of town, and the plumber is coming and where is the coat, and oh yes, we need money for school lunch because... we have no pepper-jack cheese.  

And then the deluge can't be held back any longer- tears stream as newly turned 11-year-old collapses and sobs. And I can't bail fast enough.  My own tears washing over my pale cheeks and hollow eyes, weary and tired. 

Where is courage?  Where is brave?  Where is strong?  

Gushing and rushing out everywhere.  

All of me.

Flattening me, next to my bed.  Pouring out, pooling around me.  Until I am at the end of myself.  

And I leave it.

All of me.

With all of Him.

I am merely breath.

Its then that I sleep, we sleep, surrendered, spent... 












Tuesday, May 21, 2013

The message...



All weekend it seems I can't find my laundry room floor to save my soul.  Its been hi-jacked with hockey equipment, baseball uniforms and stuff in general.  I spent a lot of time this weekend sorting and washing and listening.  Even though I wasn't prone on the floor, my heart has been in a constant dialog with Him. 

I've just been waiting to hear.  Something.  A sign perhaps?  A moment of clarity?  But nothing truly stirred me.

So I went to baseball and basked in the sun.  It was quite hot, but nobody dared complain about the heat considering how long we'd waited for it.  

Then I went and got summer painted onto my toes with my friend Anne.  It felt like a total splurge and those who have gifted me should know it boosted my spirits in the best way.


And then being the spontaneous, adventurous girls we are, we proceeded to dinner and a fun night of yummy food, giddy laughs and a night of full moments.  

Grey and gloom descended on Monday with loud thunderstorms awakening us at night.  I tossed and turned all night, wondering if my dreams would somehow convey a message.  Still nothing.

So I spend my time soaking in all the beautiful comments left by so many readers and followers.  My heart fills with abundance to see and fully feel so many prayers and good thoughts wrapping around me.  

Its Monday morning when I perhaps get the loudest message, and I am hoping its Him showing me his sense of humor.  

As I go to sit out in the atrium between the clinic and the rain pouring down outside, both doors open in a big whoosh and I hear loudly a praise song playing... I knew it instantly

"Softly and Tenderly Jesus is calling... calling for you and for me... come home, come home..."

As I glance around, I see that people are oblivious to the music, merely gathering their wheelchairs, or pushing the opener for the doors- preparing to step out into the rain...

Its then that I see Rick driving up and I hurry out to him, breathless with nervousness.

I just couldn't help but laugh, while also anxiously wondering, is this the message meant for me?  

I shared the experience with a friend who thankfully gave me some  perspective and said maybe the message is simply God telling you to rest safely in his arms?  

It was both reassuring and insightful to have her perspective.  

 I do know my human mind can surely misinterpret a sign from above- even think it was for me, when perhaps it wasn't.



Today I saw Dr. Panwalkar.  He was all down to business right away.  He is serious and a somber tone permeates the room.  He wanted to go over the TWO spots in my brain.

Two?  How- where- what?  Two?

He turned to the scan to show me.  Yes- very likely, its two spots now.  

And the variables in how to treat this are confounding.  

So we will do several things.  We will do the targeted radiation.  We will also do another PET scan and determine to what extent the Xeloda is working.  We may add in Tykerb, as Xeloda and Tykerb together can cross the blood brain barrier- two of the few chemos that are known to.  But the combo is harsh and the side effects can be rough.  

My head swirls.  I feel the heaviness of it all, for everyone.  

Dr. P says we'll skip the exam, but I do make him feel my lymph node.  He finally smiles when he realizes it does feel smaller.

I share with him Dr. Foster's idea that my cancer is not typical.  He concurs, "yes, your body," "but your head," and he shakes his own side to side, as his voice trails off...  "Well, we'll just have to fix it," he says with firm resolve.  

By noon, I am back in the entryway again.  Its a beehive of activity, and I sit chatting with the woman who opens the doors for everyone.  She gets called away, but before she does, she reaches down and hits the play button on her radio.  "Its pandora" she says, and she 'never really knows which of her songs will pop up."

Oh, but I do... and sure enough "Jesus is calling" faintly turns on.

And then it gets stuck. It goes into clear fits.  I even lean over trying to help it along, but nothing I press helps in the slightest.  I finally turn it down, knowing she'll fix it when she returns.

I can only chuckle as I leave to get into the car.  

I'm just waiting... 














Friday, May 17, 2013

Sideways...



We're tiny minutes late, going to see Dr. Foster.  I'm ready and I'm not.  In a "who knows why?" last minute flurry I change my necklace.  Instead of my vertical cross, I choose the sideways one.  Mine has become tarnished from wear.  But, it feels right.  


Especially when it feels all wrong. 


 Dr. Foster is pleasant, but brisk.  He smiles and answers when I ask how his hockey season was and then he inquires about the boys, but quickly its back to business.  

I tell him we can "forgo" the gown if he'd like, but no, he says he'll consult his notes while I change clothes.  So I'm waiting again as I quickly change into a gown.

He returns.  Examines me thoroughly, in much the same way Dr. Panwalkar does.  He finds nothing.

He says, "Go ahead and get your street clothes on, and then we'll discuss treatment."

And then I know.  

I run my fingers over my cross.  The sideways cross, reminding me of the one He carried.  Reminding me, that He plus me, will carry whatever is to come.

Long minutes later Dr. Foster returns.  

"Well, this isn't what I wanted to say."  

The room starts to fade from my sight, as everything slows, again.  I've been here before.  

Hearing what he doesn't want to say, what I don't want to hear, what I don't want to tell you.

The cross reminds me, He has been here before too. With me.  



"A new spot has appeared on your brain, 8 mm, a distance from the old spot, but deeper in your brain."




And then we go over all the things that don't add up.  I feel fine.  I look good.  I have already had a response to the Xeloda.  Its been 14 months since we treated my last spot in my head and typically more spots would have appeared by now.

So, I gather I'm not typical.  

"Biologically, your cancer is behaving in its own way, in it's own time."

I tiny smile to myself as I recall Dr. Panwalkar's words about my PET scan as "not terrible."  

Now I can add, "not typical."  

I chose the sideways cross, perhaps, sensing my news was a little sideways too. 

I have 3 options.  

Watch and wait, re-scan in a couple of months. 

Have a new "Jason" (Think Friday the 13th movies) mask made.  Screw my head onto the table.  And shoot a one-time targeted shot of radiation at my brain. Again. 

Or, radiate my whole brain.  

I ask for some time.  To think.   And talk to Dr. P.




In the meantimes, you will probably find me near the laundry room floor, on my knees.  



Emptying... to fill again.  






Wednesday, May 15, 2013

Colton's 11th Birthday!








Colton, can you wink?  Or 20 seconds that is one of my all time favorites.  




Dear Colton,

You were such a "big" baby we called you "Bubba" for the longest time, but to see your long and lean limbs and torso these days, Bubba just doesn't cut it anymore.

You are your mother's son.  You are the peace keeper, the calm maker and the care taker.  You have bonded to me fiercely and are the first to throw your arms around me unabashedly.  I love how open and generous your spirit is.  You're the first to curl up with me when I rest and then you look at me with your big doe eyes and long lashes and say so sweetly "Can we please watch Chopped?"  It doesn't matter what I am in the middle of watching, how can I resist those eyes?

Those same eyes that laser right through when you are mad.  Your nose crinkles at the top, your eyes light on fire and then your nostrils flare- we call those "Power Ranger" eyes and whoever is you target is in trouble when you reach your boiling point.  But so often those big doe eyes fill with crocodile tears first, and when they start to spill, mommy is the first thing you seek.  My heart always beats an extra beat when I see those tears that melt me on the spot.

You're funny as heck and crack us up with the things you say. I went back and found this little gem from several years ago.  We called it... 

Dear Colton's future wife,

When Colton tells you one day that "meatloaf" has chocolate spread over the top of it, could you just go along with him?  Oh, and nod your head when he tells you his mother made it with ham? I've stood on my head so many times trying to get the boys to try various dishes I make for supper.   Colton has always had an aversion to meat.  But I am learning that if you give a dish a creative name,  like "sugar-and-chocolate-covered-no-thats-not-meat-underneath-surprise-loaf," you stand half a chance that they will take a bite.  So what if he only heard the "ham" part of the hamburger.  And I can get by with calling brown sugar and ketchup "chocolate."  Please, future wife, forgive me. 

The little turkey ate 4 pieces and swears its his favorite meal EVER.  It was such a hit, just wait till you see what we're having tomorrow night...  "hey-thats-not-tuna, noodle casserole,  with yep- those-are-green-skittles-inside."  


Bubba Jack- I love you to the moon and back. 

Love,
Mommy


I will be having my mri of my brain today with sedation.  I will most likely sleep the rest of the day.
Thank you to everyone for their prayers!  Scan results with Dr. Foster tomorrow morning~ 

All shall be well~


Tuesday, May 14, 2013

rescuing...





I'm guilty of it without realizing it.  I "tell it like it is," sometimes.  I write a post. Spill whatever is going on.  Release it.  Feel better when I don't have to carry it anymore.  Then move on. 

And then I expect that my blog friends will come and commiserate, cheer me up, pray for me, or laugh along with me. End of story, right?

But the part that continues to just floor me every time?

Is when someone does an additional thing.  And rescues me when I least expect it.  

I get calls, texts and emails with offers of help.  "Can I help?"  

Like Jenny, and Nicole, and so many others after my post on Friday. 

Nicole reads about the boy's birthdays and my lack of getting anything done, and then contacts Jenny who bakes and decorates cakes.  

So in a matter of a couple of exchanges, the boys have a cake scheduled for a surprise arrival. 

And shoot- the two girls were so cute appearing at my door yesterday- why didn't I reach for the camera?

So for Mother's Day we grilled hamburgers and had Grandma and friends come over for Birthday Cake.  Could there be a better way to celebrate the day?  


Jenny has a facebook page for her cake business.  Its called Baby Cakes and so worth your time to check it out!







As if cake weren't enough- I had one more unexpected gift on Mother's Day.  I stumbled across a new post in my fb feed.  A Roger Maris Oncologist has started a blog.  I clicked right over... and

And really- you should just go read.  I was so surprised! Its a short introductory post, but you'll see why I was left humbled.  Plus, its a blog that I think so many people will find insightful and helpful and inspiring.  

Dr. Shelby Terstriep's blog:







I'm feeling better!  I adjusted my meds and it helped.  One more day and my second round will be complete!

I have sedation and a brain mri on Wednesday...  Dr. Foster on Thursday and we have another birthday boy to celebrate!  


Happy 11th Birthday to my Colton Jack! 














Saturday, May 11, 2013

Happy 13th Birthday Nolan!

Dear Nolan, 

How in the world could it be that you are turning 13 today?  THIRTEEN!  I guess to look at you, I could say you are 13 going on 23 - what with the facial hair, and the fact that I now have to look up to see you - as you are officially taller than me.  

I was so proud of how you navigated this morning.  You wanted to go golfing - and the 30 mile an hour wind was not going to stop you.  You called a friend's mom,  asked for a ride, and then called the golf course and made your own tee time.  You ate, fed the dog, and got everything ready to go.  Where did my "little" boy go?

I know I scared you last night.  I forgot you were still up. I got up out of bed doubled over from sharp pains in my stomach.  I heard the worry and concern in your voice as you helped find Dad.  I needed the help of Dr. Google, and strong meds to combat another tricky side effect of Xeloda.  But you stood strong, holding me up, instead of running away.  I both hate that you have to see that, but can tell, its growing you into even more of a kind and compassionate soul.  

You've added such a richness to my life buddy.  A bold, yet soft, tangled, but beautiful, sensitive, and strong, thread to the fabric of you and I.  I always knew when my due date was "Mother's Day," 13 years ago, that you and I would be forever bonded in a special way.

My body is weak today, but my heart is filled with all things you.  You ran outside waiting for your ride  as I sat at the kitchen table, resting my head on the coolness of the wood. Lickety-split you ran back in, pulled me up, and hugged me.  Big.  All of you, wrapping yourself around all of me.  

And that will always be enough buddy, to see me through.  You are always more than enough.  


I'm reaching back today- to my favorite Nolan story... 













I have an entire journal filled with "Nolan" stories.  No story however, comes close to topping his story about God and the sunburn.

When Nolan was three he had gone to play the Sunday golf game with his dad one April day. It was unusually warm that day and got up into the mid 60's. It was just warm enough to catch us off-guard and Nolan experienced his first sun burn. Oh did he howl when I gave him his bath that night. He could not fathom how that red had gotten on his skin. We put some ointment on it and put him in bed and he was much better in the morning. 

A few days later after his bath he came to me. We'd had one of those days. I was in bed, emotionally drained and exhausted. Its hard to be three. Its even harder to be a parent of a child who is three. I was startled to see him creeping into my room. His eyes were downcast. His voice was somber and serious. "Mom, he said, his voice filled with resignation, "I think I'm dying." I got up from the bed. My mind started to spin. 

I said "Nolan, what is wrong?" 

"My skins coming off," he said. "I must be dying." 

I said, "Nolan, what have you been doing? Did you get into something? DID YOU PUT SOMETHING IN YOUR MOUTH?" 

"Oh mom," he said, "Every day I do. You tell me not to, but I do. I just can't help it. 

"What Nolan, tell me what you put in your mouth?" 

"I ate grass once," he said. "I eat dog food all the time. Oh, and I licked the bottom of my shoe. Yesterday I tasted the side of the car and its pooey mom, don't ever put your tongue on it!" 

By now I am trying to hold my sides that are jiggling from the laughter trying to escape. 

"Now my skin is coming off. Mom, I'll probably be going to heaven tonight. Don't be sad."

I am leaning over inspecting what I realized is the peeling sunburn now and hugging him at the same time.

"Oh Nolan" I managed to choke out.

As I go to get some lotion he tells me he has to use the bathroom. I holler at him to close the door and wait for him to return. As he comes around the corner he is smiling. "Mom! I've got it," he says. "Do you think God goes potty? Because if he does, and he closes the door, I'll just sneak down from Heaven when he isn't looking and give you a hug so you won't miss me too much." 

And with that he ran back to bed. 

He is a keeper that one. He tries our patience, and manages to find our last nerve some days. But the joy he brings, the laughter, the unique way of being in this world. He is more, and with that, we are more too. I can't wait to have the rest of this journey with him.

We love you Nolan!  Happy 13th Birthday!

Friday, May 10, 2013

Wild~



The Excel Energy Center hours before game 4 of the Playoffs.




Rick's panoramic photo of the packed Xcel Energy Center.







I'm slowly acquiring the posture of "embracing."  Of leaning in and trusting that despite going outside of my comforts,  I can feel okay.  In fact, how I feel, can take a back seat if I am willing to propel myself right through.  

So on Tuesday, we embraced the opportunity to surprise the boys.  We picked them up from school early and had their bags packed and ready for them.  As an early birthday present for both boys, we got them tickets to the Minnesota Wild Playoff game.  It meant pushing other obligations to the side for awhile.  It meant lots of rescheduling, canceling and opting out of other things.  But... we just knew it'd be worth it.  We'd never gotten to see our own #7, Matt Cullen play in the playoffs before. 

The atmosphere was electric.  The Wild had just won at home on Sunday and we all were looking for a repeat performance.  The white towels waiting for us across our seats swung wildly through the air.  We stood more than we sat for the first period.

But when our back-up goalie was injured, and the first shot went in against us, the Xcel Energy Center slowly deflated.  Despite repeated power plays, we couldn't find the back of the net and the Wild lost to  the Blackhawks in game 4.  Last night, the Wild lost in game 5 of the playoffs with Chicago, and are now done for the season.  

The Wild went from a lockout all the way to the Stanley Cup Playoffs in a year fraught with a roller coaster of up and down moments.  We're so proud of our team!


As we customarily do, we used Hotwire to find a hotel room.  We've figured out that we can secure a room, at a 4/5 star hotel for a fraction of the cost of their usual rate.  We just don't always know what hotel we will end up at.  

The Commons turned out to be a real treat.  Even though we arrived late, crashed and had to leave first thing the next morning, I managed a few shots of some of the cool features I loved.










We arrived home Wednesday night.  By Thursday, I was so tired I couldn't muster enough energy to get out of bed.  

Today, here I am, one day before my son's 13th Birthday- two days before Mother's Day and 3 days before my other son's 11th Birthday, and I have nothing ready.

So I am going into the sun-filled day, embracing all that awaits as we plan our next few fun-infused days and praying for energy enough to see me through!  















Monday, May 6, 2013

life begins...



Clearly, I went way outside of mine, on Saturday.  Writing is one thing, but speaking to a large group of women?  A little daunting. 



But my mother, with her sister Carol on the left and her sister Marlene on the right, were there to help ground me and center me  as I shared my faith story.




As usual, my brain was running on the slow side... my beautiful cousin Pam also came and offered to shoot most of these lovely photos you see.  I, however, was not quick enough to turn the camera around on her- so let me just say how I honored I was to have her and the rest of my family show up.  



The theme for the women's brunch was blessed assurance.  The room was decorated in a springy and colorful way that shed some light on all the gray and cold outside.







Aimee, on the left was diagnosed last fall and shared about how she felt so covered in prayer and how that helped her through.  She shared witty stories of her journey and how a new normal is settling in.  And the young woman, Kylee, in the middle is just 16 years old.  When she was just 3 weeks old she was diagnosed with a rare form of cancer.  Its propelled her into thinking she will go into medicine and wants to live a life of service.  She is planning a relay for life event on Saturday, May 11th at Moorhead High School.  



The beautiful plant we each received for speaking.




I think the sharing of my story went well.  I wove together bits and pieces of how it seemed to begin shortly after my father passed away in 2010.  I had chosen the word "Alive," to start off the new year, and was diagnosed with stage iv breast cancer 3 months later.  My faith grew exponentially after that and I shared a little about how that came about. 

I worked relentlessly last week on trying to cohesively explain the major bits of my journey.  While I accomplished some of it- I was surprised by how much of the story, seems to still be waiting for me to fully recognize it. 

Perhaps, I need to take the time to revisit this chapter again and see what else it is I need to discover- to know- to understand.  



While I was speaking, Nolan and his team, the Jr. Spuds were skating in a hockey tournament in St. Cloud.  They won first place again!  So proud of these boys- so bummed to not be there.  









So Colton and I hung out all weekend together.  We went to a movie, found out which baseball team he is on, and went to hockey practice.  We ended our weekend with one of our favorite things- breakfast for dinner.  

Speaking of "outside your comfort zone," I'm feeling the yucks again.  But, I am slowly incorporating yucky into every day life and its oddly starting to feel somewhat like normal.  

Blessings on your week everyone! 







When you get lucky

When you get lucky

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