... just part of the narrative...

“I believe that suffering is part of the narrative, and that nothing really good gets built when everything's easy. I believe that loss and emptiness and confusion often give way to new fullness and wisdom.” 
― Shauna Niequist, Bittersweet: Thoughts on Change, Grace, and Learning the Hard Way

The letter arrives midweek.  Rick casually hands it over upon discovering its not a bill.  Its a letter with the results from my PET scan.  

To be honest, its a mixed bag- that I still don't have answers for.  Dr. Panwalkar assured that we would go over everything in greater detail on Tuesday.  

The heaviness in my chest takes on a new meaning.  While some tumors are shrinking, others are growing, from mere millimeters, to centimeters now.

The whirlwind of thoughts surrounding the new brain mets, takes a back seat to thoughts about my lungs, which oddly now trump my brain. 

Yesterday the phone rings with the radiation nurse on the other end.  

Will 12:30 work?  Could you come in at 12:30 so we can begin radiation at 2?  

I think so, I reply.... umm... which day would that be?

She is talking as though I knew already and maybe I am supposed to.

Monday, the 10th she says finally.

My mind floods with all new concerns.  I can't believe how panicked I feel.

I will have targeted radiation to my brain on Monday for two spots, with sedation,  and then have infusion for Herceptin early Tuesday while starting my next round of Xeloda.... and will there be another drug added to my chemo cocktail? 

My mind simply can't fathom my body can do all of these things?  

I cave in, and call Dr. Panwalkar at noon, needing a voice of reason.  I rarely call him, even though he assures me I can. 

Its 5:40 Friday night when I get a return call from a nurse. 

I try to explain my concerns.  But I can't seem to get her to see... 

I acquiesce when she simply states-  "Its just Herceptin, just lie down if you need to, its fine, then you just come back the next day and you can continue radiation."  

What?  

So, I'm doing the only reasonable thing I can muster... I'm running away this weekend!  On a retreat, with a friend, to a place that nourishes me in ways I can hardly describe.  I'll be in good hands and exactly where I think I ought to be.

I don't know when I'll be able to update, next week is shaping up to be a doozy!  But rest assured... this much I know is true... all shall be well...

What are you willing to give up?

I spent Sunday outside all day.  This blue chair came from my father's childhood farmhouse.  I love that its authentic, and even the blue chipped paint is decades old. 

It started sunny today- and I intended to go out and take photos later.  Ahhh, then I saw the black clouds forming as I turned to go, and instead grabbed my camera.  I had two minutes of sun till the grey overtook the skies once again.  No matter how dark, some rays were still seeping through.  

I started the oral sedation meds yesterday that Dr. Foster wanted me to try, an hour and 15 minutes before we left the house.  I expected to feel pretty foggy and sedated by the time I arrived at the door of the hospital.  

But I didn't.

So as we sat waiting to be called back, I took another pill.  Now for sure I expected it to hit me.

I sat for another 20 minutes before I was called back.  I thought, "this will be the test, standing up, when it usually hits like a ton of bricks."

But no.  Still just a distant calmness which was pleasant, but not the knock-down-drag-down I can't stay awake kind of feeling I expected.

Sigh.

I quickly changed my clothes as instructed and walked back to the mri room.  Its the most awake I've been in that room since the first time I was there unsedated 2/12 years ago.

And then I saw him.  One of the techs I've had several times before.  And when his opening words to me were, "you only have a 9 1/2 minute scan."  I nearly fell over, but only based on his words.

Thats it?

They told me an hour on the phone.  I was prepared to be in the tube for an hour.

He laughed, shrugged and said- nope- I just need you to lay still for the entire 9 1/2 minutes.  

No problem.  

I think trying to place an iv in my arm took nearly twice that long.

Finally I was tube worthy. 

Even though I was awake the entire time, I laid absolutely still, thanking God the entire time.  

When I went back to the radiation department, I still wasn't feeling my normal sedated self.  

We went over how everything would proceed.  Then the treatment consent was given to us and we were shown the part Dr. Foster filled in.  I don't know if I just psychologically couldn't listen to it all, or if sedation was starting to take effect.  But either way, Rick and I both know, despite the side effects, (hair loss, vision, impairment, ???) non-treatment is clearly not an option.  

“It's not hard to decide what you want your life to be about. What's hard, she said, is figuring out what you're willing to give up in order to do the things you really care about.” 
― Shauna Niequist, Bittersweet: Thoughts on Change, Grace, and Learning the Hard Way

It seems that with cancer- we give up some of the healthy parts of ourselves in sacrifice to the diseased parts of ourselves- so that the living parts of ourselves can go on.  

So the radiation nurse and I agreed to try 1 more pill after sensing I am not nearly sedated yet.  Then I laid down in a darkened room for half an hour.

Now I was starting to relax.  They walked me back to the PET/CT scanner I had been in the week prior.  

Then the techs began wrapping my face in warm plastic pieces to make my new mask.  The techs were wonderful about describing each bit to me and reassuring me I was doing fine.  

Easy. Peasy. Lemon. Squeezy.  

Mask made. Preplanning in the stages.  Day complete!

Rick drove me home and I promptly slept for the next 4 hours.  Sedation finally achieved. Smile.

Dr. Foster called again today.

The spot in the back of my brain that they were going to just watch?

After much deliberation by several doctors, we are going to go ahead and zap it now too.

I am so deeply appreciative of your prayers.  Every little thing that goes so smoothly in the midst of all the mess and the hard,  feels like something one of you has asked Him to see to, and He has.  

"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.” 

― John Green, The Fault in Our Stars

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 Green, The 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.

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...

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... 

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... 

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.