Somehow

I'm cleaning.  It's the thing I always turn to when I try to restore order in my world.  So I'm sorting, cleansing, throwing.  On my knees, then reaching far above my head.  Scrubbing, harder and harder.  If I use all my might?  All my tough girl fight?  Will I scrub all this cancer away?  I barely sit down.  I work until my back aches, and my arm swells, and my breathing is jagged and sharp.  Till I have no more.  Tears creep down my cheeks, as Crosby leans in to lick them away.  Somehow I'll clean it all away.  

Dr. Panwalkar was all business when he walked in the door of exam room 7 on Tuesday.  He smiled and shook my hand firmly, then sat down right away to begin looking at scans.  He still seemed to be in the midst of deciding what to do.

As he talked his way through the scan, pointing out where in my body "progression," had occurred, he kept saying,  "I'm not sure I agree."  I just kept sitting, waiting for the verdict.  

He finally turned the screen, and it wasn't the splashes of yellow, glowing from the screen that unsettled me.  It was the words, oh those awful words.   The report from the radiologist, was so hard to stomach, all I could do was avert my eyes, I simply didn't want to see, didn't need to know.  Yellow splashes, in my lungs, down through my abdominal cavity kept jumping out at me.

But Dr. Panwalkar is still shaking his head, not in agreement with the words.  Based on what he sees in the scans?  Those aren't the words he would choose. Its in these "hard" moments I need his sturdiness and his knowing,  the most.   Somehow he always "sees" me in these moments.  

So he reveals his plan... one I couldn't have seen coming... as sometimes happens.  He changes his mind in the moment- flashes of brilliance or thoughts of another way that suddenly occur to him.   His demeanor changes and he simply says, "How would you feel about trying TDM1 again?"  

I start to see where he is going with this.  I've had TDM1 before and it cleared out my liver mets, and kept me stable for almost a year.  Its been 4 years since I've had it.  

"I know nausea was a problem, but we'll give you something to help with that," he says.

"We'll scan again in 9 weeks, and then go back to aggressive chemo, if it hasn't worked.  Weekly Taxotere again. What do you think?"

I nod my head up and down.  

He fills out the new consent form and tells me to take it to the infusion center.  

Somehow he makes me able to stay in this moment with him.   We even talk about his family trip, and he smiles so big when he says his 6 year old walked all over the city they had visited, and its good to see pride in a son, beaming forth from a Dad.   Its always a brief moment that he steps out of "doctor" mode, and it feels good to sit side by side with him. 

He walks me to infusion and says I may have to wait awhile for infusion, as they seek insurance approval for the TDM1.  "See you in 3 weeks!"  He saunters off.

So I've barely sat down and I look up to see Annie coming.  She hugs me big and says, "Getting ready for Taxotere?"  I smile as I tell her he's already changed his mind and tell her about the TDM1. Somehow, she knows when I'll be at the clinic and then comes to find me at some point.  She is compassion and warmth, and whispers she'll say a prayer that approval comes quickly.

And let me tell you- I barely sit down- and they tell me I'm approved and my room is ready.  How's that for answered prayer?  Insurance approval is huge, and that Roger Maris has the drug available is equally as huge. 

It was just the week prior that I happened to run into Alesha, one of the infusion nurses, and she took the time to stop and ask how I was doing.  I hadn't seen her in awhile.  But we said maybe sometime soon I'd see her again?

So I settle into my chair and look up to see, who was assigned to me this Tuesday?  It's Alesha!  We're both surprised.   Its crazy how blessed I feel, in the midst of the mess of it all.  When I pray for "strength" to get though all of this, somehow He provides for me.  Sending me all the right people to see me through.  

Infusion lasts 3 hours for the loading dose.  I use my time to journal my gratitude which fills page after page in my book.   I'm done in time to meet with my stage iv, Fourward support group.  It's very humbling to be surrounded by woman, who are so likely going to say, "me too," whenever we share about our latest news.  I'm humbled and honored all at once to call them friends.

Its a lonnngggg day.  As I wait for a ride home, I'm surprised to see it's Nolan who drives up to get me. The tears still lie just below the surface, and I keep them in check so my son doesn't have to see.  Somehow, its simply enough that at 16, he drives to Roger Maris to pick his mom up from her chemo.  

The rest of the week I'm nauseous.  Achy.  Emotionally wrung out.  Summer is slipping through my fingers as I clean through my desk top photos.  Glorious sun shining in so many.  Plus nights out with several friends.  And a sprinkling of some good books.  Somehow the light always finds a way to shine through the dark and hard.  Somehow...

200 times...

I should have known...

As I have prepared  for our family photoshoot with Ria, I had so many concerns flooding my head.  How will I "tame" my wild hair?  Its become curly with cowlicks popping up, and can I somehow manage to make it look, "photo worthy?"  Can I find a shirt that fits my swollen arm, while covering my port? But please let it look cute!  Can I draw in those eyebrows that are just making a reappearance?  The eyelashes... or where for art thou eyelashes?  Can I?  A million times over, can I?

Even the day of the shoot I wonder...

Will the boys cooperate?  They don't like wearing jeans... and did I match their clothes ok?  Will Rick be able to carve out some time from his deadline? Will we make it in one piece?  

Suddenly, it's photo day.  I peek under the shade early Monday morning and the sun glints through the blue sky... and we're off.  Its a day chock full of preparing for all kinds of things.  But underneath, I still wonder, can I?  

The time draws near for us to leave... but Rick's shirt has creases and he needs to iron.  And Colton's jeans are too loose, and where is that belt?  And my hair?  Oh goodness, it has a mind of its own!  

But suddenly we're pulling up... and it's time!  And as I step out into the golden sunshine highlighting the lush green, the red hues of the rustic barn, the bursts of color from all the wild flowers...  I remember...

"It's not about me..."  

This life I live?  Really, God's glory shone so brightly all around me I knew that even if I can't...  HE can.  His way, not mine.  His will, not mine.  And when I let go?

Look how HE shows up!

He puts my little family, in the uber talented hands of Miss Ria, and then shines a light down across all of his creation and we get to humbly stand in the midst of it. Really?  The abundance overwhelms and my gratitude explodes. 

And then YOU, all show up when Ria posts the photo from above on my Facebook page and says this:

"As soon as I clicked the shutter I knew this would be my favorite shot of the night. One of the things I love most about the gift of photography is the ability to see a "feeling", and I hope you can both see and FEEL love when you look at this."

And that photo gets liked, and loved over 200 times, and I'm deeply humbled by the sweetest of words and encouragement left for me.  It's 200 times 200 times 200... multiplying love to infinity. 

I take a few quick photos before we leave- the sun set is spectacular, just like the last time we were so blessed to shoot pictures with Ria.  God's hand is clearly showing through all of this.  

So this is what I'll take with me tomorrow at 1pm, to the MRI tube, and the sedation nurse.  This little piece of "heaven," and my prayer list.  

Can I add you to my list? How can I pray for you?  Please leave a note in the comments below and as I prepare both tomorrow for the brain MRI and Friday for a PET scan, I'll pray.   

I'll see Dr. Panwalkar next week and come back to share scan results soon.

And more photos to come... 

the big surprise

Oh, where do I begin?  A few weeks back, Rick mentioned we'd be taking a trip.  At some point he mentioned it was a "surprise," and all he could share with us was we were headed to Minneapolis for the MEA break from school. (Thursday, Oct, 15th) 

So a few days before we were supposed to pack for our 3.5 hour ride in the car, we started asking more questions.  What were we doing?  Where, exactly, were we going?  

Rick simply said, pack for 4 days, casual attire, and just know you'll have lots to do and you'll have a great time.

If living with cancer has taught me anything?  Its this- sometimes, you just do, whatever is in front of you, with little thought about why.  

So I packed.  We packed.  

Then Thursday morning we hopped in the car.

And then like every. other. trip.  Rick had to make 1 quick stop before we got on the highway.  He had to drop off a picture for a woman who was at work in Fargo.

Sigh... so classic for Rick.  We didn't even blink.

As he pulled into a loading zone, he ran into the building.

And we sat.

Waiting.

To go to the cities.

But...

Rick soon came back to the car and said this "Vicky, the woman working inside is a fan of your blog, and would like to meet you- all of you.  Could you come inside?"

"Of course," I say, as I glance at my watch and think about our need to get on the road.

So we all go inside the beautiful building.

She greets us all with the biggest smile.  Have we been to the Fargo Jet Center before?  

No, we haven't.

We walk around and take it all in. 

She then casually points at the plane sitting outside getting ready for departure.

She turns to Colton, "So if you could fly anywhere, where would you like to go?"

Colton stammers, "Ahhh, Miami?"  

Then he points to me- "mom would go someplace warm."

We all laugh.

Then the woman, smiles and says, 

"So how about Pittsburgh, PA?  Any Penguins fans here?  How would you all like to go to Pittsburgh today, and watch the Penguins play tonight?"

Suddenly, I'm searching her face... my mind is in such shock... is she for real?

"Are you saying, all of us, are going today?' I ask?

And then she points, to the plane, waiting just outside, and says "Yes!  Right now!" 

And I lose it. I just lose it.  Tears burst from my eyes, as I lean over,  and then I see Nolan... who has literally fallen to his knees and is also in tears. "Really?  REALLY?"

"Yes!"  

Rick is misty-eyed, the woman is wiping tears, and suddenly we're all shaking with excitement!  And hugging, and shaking our heads.  Is this real?

And then we sit, and try to wrap our brains around this crazy, awesome, mind-blowing, surprise.  Then Rick snaps a quick picture.

We're offered a tour around the hangars, and it suddenly occurs to me, we're waiting for someone.

A short while later, Jeff, Sherri, and their son, Ben walk through the door.  When Ben's eyes see us, and then the plane behind the windows, the surprise takes over his face too!  Ben is related to Matt Cullen.  Bridget and Matt have planned this whole surprise for all of us! 

Ben thought he was in Fargo to help his parents get supplies... we all just keep shaking our heads in pure awe and wonderment.

Best. Surprise. Ever!

Suddenly, the pilot is greeting each one of us, and it's time to go!  

That is sheer excitement on Nolan's face- and probably Ben's too.

And that is, the "tummy tickle," Colton experiences as we take off.  We haven't flown in a plane since the boys were very little!  

A quick refueling stop in Milwaukee, and some time to explore the plane.

Ben with his mom, Sherri.

We flew at 42.000 feet!  The views were spectacular and I couldn't stop taking pictures.  We all loved that everyone got a "window," seat as well as an "aisle" seat.  It was literally the smoothest flight I've ever experienced.  It was still all so surreal.  But the expressions on our faces are real and very telling.

Just a little over 2 hours later, and we were in Pittsburgh, with taxis waiting to take us to our hotel.  We had just a few hours before the Pittsburgh Penguins would play against the Ottawa Senators.

Our hotel, was right across the street from the ice arena.

Could we be any luckier?  I don't think my smile left my face in over 4 days.  

Going to an NHL game is a pretty special treat.  But when you get to see someone from your home town, play?  And you enjoy the experience with his family and yours?  It doesn't get any better than this.

#7- our Matt Cullen.

#87 Sidney Crosby (Ben and Nolan had been to Shattuck St. Mary's for summer camp, where Sidney had gone to school for a year.) 

#29 Marc-André Fleury.  (Colton has always loved watching him play.)

While the boys and I sat in the seats, Rick got a press pass to shoot photos at ice level, for the Fargo Forum.  (Will post a link when his pictures get published.)

I think it's really great to be a fan of a player, like Matt Cullen.  He has all the talent, skill, and hard work, put together to make him the phenomenal player that he is... but more importantly to me?  I'm a fan of what a great person he is, inside, as well as outside of hockey.  Plus...

he picked her.  Bridget, is the one who dreamt this dream, that was far bigger than I could have ever imagined, for our little family.  And then she pieced it all together- seamlessly- flawlessly.  Every last detail, covered.

And if you think the "story" of our adventure can't get any bigger?  Yep, you'd be wrong.  

On our last night in Pittsburgh, Nolan and Ben hadn't been able to cross paths with Sidney Crosby.  So we were gathering to go to the car with Bridget, when Sidney walked past us.  And Bridget, knew exactly what to tell our boys... Run!  Catch him!  Go!  And they did- down through the halls, around the corners, faster and faster we all went, until, Sidney slowed, and turned around.  

"Are you the boys from Minni?"  And I'm struck by how thick his Canadian accent shines through.  The boys do a good job of carrying on a conversation with him, while clearly being awestruck the whole time.

It was a shining moment that had very little to do with anything we did.  It was just meant to be.  We've all been learning how to live in surrender, to the havoc that having cancer can wreak on your life, but sometimes that surrender means you're open to all the things that come your way- the shining moments of light, that help carry you through the dark.

We couldn't have hung out with a better group of people.  Sherri, and Jeff, with Jeff and Janna. 

All too soon, it was time to head back to Minnesota.  

I'm still not sure any of us have wrapped our heads around all that happened to us. 

The one little gem I garnered, and was able to share with Matt and Bridget was this- when you live with cancer its a 24-7 reality.  We had just talked about this in our group, Fourward.  How do you ever escape centering your life around cancer?  I've lived with it for 4 and 1/2 years, and its a heavy burden to carry.  So the biggest gift they gave to me?  To my family? Was a break from cancer.  Mentally, emotionally, and physically, we all got a reprieve from our life of hard and gritty.   As far down as cancer can take me at times, this hockey trip moved me in glorious and profound ways , in such an uplifting manner.  I lived my moments- a whole string of them- more fully than I have been able to in a long time!  

We're overflowing with gratitude, for what two people did so generously for us.  We could say thank you a million times over, and it wouldn't begin to touch how grateful we continue to be. 

These beautiful flowers are from my Uncle Bill and Aunt Carol,  and my Aunt Marlene, in honor of my mom.  They were on the altar of their church on Sunday, because Mom would have turned 80 today!  

I kept saying to Rick, on our trip, I just want to call mom and tell her!  I have no doubt, she was with us, but I still miss her.  I can only wonder what shenanigans she would have attempted today- with a twinkle in her eye- always.  

Rain of Grace

Ann Voskamp says…

"Grace holds you when everything else falls apart — and whispers that everything is really falling together."

It's always the little things.  The Birthday Cards that arrive, unexpectedly in the mail.  She is the coolest of friends from Texas, and she loves us big.  The boys, with neither of their Grandma's with us any longer, have felt the empty space in a tangible way.  They still hovered by the mail box, hoping for a little Birthday acknowledgement.  The day after they stopped looking anymore, cards arrived, from Texas.   I may have been the giddiest one of all.  There is an ache within me, for me to fully know, the boys will celebrate birthdays.  That they will be loved, and cherished.  That the community that has surrounded us, will keep them at their center.

Last Tuesday I met with the Neurosurgeon, Dr. Adam Jackson.  He shook hands with us as he walked into the room, swiftly striding over to the computer on the desk next to me.  

No moments of small talk.  No getting to know one another, conversationally.  He jumped in, with the hardest words, right away.

"Well, you are stuck between, a rock, and a hard place, aren't you?"

"Blink.  Blink."

I've stopped being able to absorb more sadness.  I'm detached in a way, but facing forward, listening to the stark reality of his words.

All I can do is stare blankly, and blink.

I'm sitting rather precariously on my seat, observing.  Wondering where he is about to take me.  He is going to go on, despite anything I might say.  So I sit.

He flips on the screen and my scan springs to life in mere moments.

He begins to tell me, anatomically, where my tumors reside.  As he begins pointing out the structures of my brain using terms I have vaguely heard before, I suddenly flash back to Graduate School.

The professor was Dr. Dahlhouse.  He was short statured, but had a booming voice.   He had moved from Jamaica, and his accent was thick.  He was funny and warm.   He was passionate about the human body.  And despite our limited time together,  he wanted us to have an in-depth look at the complexity of the human body and how it all worked.  So our Anatomy & Physiology book, was a Med School book,  used at UND.  

I literally used to sit with a dictionary, trying to decipher the words being used in each sentence of that book.   The amount of sheer memorization in that class, made it feel like a full time job, on top of which, we had to decipher some of Dr. Dahlhouse's accent. 

Suddenly, Dr. Jackson, wheels back in his chair.

I'm jolted, back instantly, in the exam room.  Dr. Jackson is no longer verbally dissecting my brain.  

Instead, he is asking me a question.

"What do you want to do with your life?"

"Blink?"

"Because if you want to sit in a boat, and fish all day long.  I might be able to help you."

"We can make a long incision along your hairline, and peel it all back.  Then we'd make the hole and drill through the bone and resect whatever we can of the tumors."  

I'm suddenly feeling more Grey's Anatomy, and where is Dr. McDreamy anyway?  

But Dr. Jackson goes on.

"But if you want to talk.  Or form sentences.  Or use words.  Or think.  Then this is probably not the procedure for you." 

"Blink, blink, blink."

"Because you look like you're highly functioning right now."

And since the first rule of medicine is to "do no harm."  Then I shouldn't do surgery on you.  Its far too risky.

"As is any needle aspiration of the tumor for a biopsy.  Too risky." 

"Blink."

Do you know how hard it is for me as a brain surgeon,  to tell you I can't do surgery on you?"  

Do I know…?  No, I know nothing.

"Blink."

"I'll tell Dr. Foster I think we should watch and wait. " 

"But if you should decide you do want to proceed, than please feel free to contact me again."

Double blink.

"Grace loves us when we are at our darkest worst and wraps us in the best light."  

~Ann Voskamp

A week later, and I still don't have any answers.  And neither do the doctors, so far.  I've tried to do some internet research, but I've clicked away each time, because "darkest, and worst" are in bold face everywhere I turn.  

So I turn back to Ann Voskamp, who is  prose-worthy, as well as praise worthy.

And she says:

"You don’t have to know how to do it all.

You just have to choose to be all here, right where you are.

His grace meets you in the moment — and you will miss it if you are worrying about future moments.

Lock your thoughts in this moment — and you get to live the freest of all."