Catching up

 Light gives of itself freely, filling all available space.  It does not seek anything in return; it asks not whether you are friend or foe.  It gives of itself and is not thereby diminished.  ~Michael Strassfeld

Last weekend Rick surprised me with a little get-away.  We'd tried all summer to find a last minute deal on a cabin at Grand View Lodge, but nothing fell within our budget.  So we felt pretty lucky to finally get a really good deal on a room, despite the fact it was only for the two of us.  

Reveling in the fact we had no agenda to adhere to, we took off, letting Siri route us through the back roads to Brainerd.  We simply wanted to enjoy the scenery and photograph to our hearts content.  

By dinner time we arrived.  We'd be staying in a room in the lodge itself.  But the light... oh the light... drew me right past the lodge and around to the breathtaking front.  

I felt it instantly, but couldn't figure it out.  What was so different?  I didn't care, I simply immersed myself fully in the pine scent hitting my nose, the sunshine flooding my face, and the sound of the waves rapping against the shoreline.  

I turned back around, as my lungs started to burn, and my breathing grew labored.  

But each step helped me shed another layer of burden I've been shrouded in for so long. On I went... 

I made it down to the water and thrust my feet in, the lapping water cleansing more than just my feet. 

It took a rather large quantity of caffeine for me to venture back  down to the shore after dinner.  I have to be cajoled at times, into not withdrawing into myself too long, and too often.  

But between the campfire, the gorgeous sunset, and the company of superman, I was so happy to discover the serenity that enveloped me. 

Around every corner it seemed, the light peeked through, beckoning me forward, despite the weariness I so often feel.

The next morning, while the main dining room was closed, we were provided breakfast and the food never disappoints.

Our second day was just as warm and light-filled as the first.

The leaves seemed to be turning colors before our very eyes.

Rick and I loved driving around, the tree-lined hills pulling us around the bend, over the hills, and up the mountain for our next grand view.  I snapped oodles of photos, as the all too familiar aching started climbing through my back.

I love that Rick always graciously answers yes, to taking photographs of others.  We've been gifted ourselves with photos that are dear to us, and we always seek to pay it forward in some small way.  He literally got to shoot a newborn, in her first family photo by the lodge- it has Christmas Card written all over it.  

Down to the water for one last trip, and we fully saw what the other guests had been talking about.  We knew something was different and it slowly started to occur to us.  It seems a big storm had gone through the property, and the deck that had seated dining guests, and a whole bunch of tall thin trees, had been snapped in the wind.  The view has become so "open" and truly gives it a fresh appeal.

But it's still "lodgy" enough for me to wonder where Baby is with her watermelon?  

The sun was just going down, as I took my last trip back up the stairs.  My fitbit started buzzing as I officially hit 10,000 steps and reached a new recored of 26 flights of stairs.  But my back had soaked in and registered each step and pain was shooting through my shoulder blade. Superman whisked me off to retreat to our room, finding meds to ease the discomfort.  I can't fight against it like I once could.  More than ever, I find myself yielding to it, surrendering to what is.  

We leave the next morning on a drizzly day.  With each fluttering leaf that falls, I feel the life-giving warmth of the sunshine grow more distant, and a sense of it's loss settles in. 

Its days later, I sit down to go through all of my photos.  Photo after photo, the light floods over me, and joy spills through.  It's the pure abundance of all the blessed moments that washes over everything.  It's why I have to lean in to the hard.  Embrace the mess.  Walk along the gritty path. The light always finds its way through the dark, we just have to believe. 

After a wonderful Breast Cancer Survivor's night event a week ago, along with all the goodies we received that night- my friend Sue gave me a card- filled, I mean FILLED with the names of all the people who so graciously donated to my wig fund!  I was speechless!!    

Just some of the names are  on the card below on the right- if you flipped the page over- more names were on the back!! And the big reveal below...

I have no idea what I should name my new hairpiece?  She has soft highlights, and  we cut bangs into her.  The wind was blowing all around, and yet she didn't threaten to move an inch.   The smile never left my face. I'm deeply moved, and extremely grateful for all the sweet words, the generous giving, and the thoughtfulness of so many.   

Dr. appointment then infusion tomorrow and a full week ahead- with yet another big surprise left to reveal... 

you'll need others...

Dr. Panwalkar strode into the exam room last Tuesday, and after shaking hands, he plunged into asking about my back pain, before he even sat all the way down.  

"So what's this I hear about your pain?"

So I tell him all about it.  And as I do, he leans back, his hand resting on his jaw,  intently listening.  He asks all kinds of questions and then says, "Well lets examine you."

I breathe deep, a few extra times this time.  He is listening to something, but makes no comment.  I have no burning need to know.   Back, then front.  He checks my nodes, my neck, my shoulder.  He checks my abdomen, pushing in as I hold my breath... "Any pain here?"  "No, it's fine," I answer.

He thumps down my spine, finding no sore spots.  He checks for swelling in my ankles and arms, throughout my stomach.

He leads, I follow.  Mouth open, eyes staring, arms up, then down.  Till finally, he rests his hand on my shoulder, steadying me - the only sound- the buzz as he brings the exam table down.   He then pats me and nods at my seat by Rick.  I smile when he goes to shorthand, and I read him smoothly.  The movements are all choreographed in a way, and it calms me so, knowing we've done this hundreds of times.  

He again sits, leaning back, pondering what may be causing such discomfort.  Distance grows in his eyes, as he shares a bit about watching his grandparents go through treatments for pain back in the 80's.  It occurs to me Dr. P would have been a child at the time.  He suddenly blinks, and says "sorry."  But its those rare glimpses of him outside of being a doctor that help me feel I'm more than my label of patient, too.  

So he offers the idea that perhaps the pain is coming from radiation damage from the treatment I had to my lung awhile back?  And since neither one of us thinks it would be cancer, truly I just need to work on alleviating the pain.  He agrees with  both the ideas of seeing a chiropractor or seeking acupuncture, and mentions I could see Dr. Lien.  

As he makes refills on my scripts, he asks, "Any more questions?"  And he turns, drops his hands, and looks me in the eye to see I'm shaking my head no, and smiling.

We accomplish so much in our time together.  He is my "other people."  

Look at how others keep showing up to see me through...

Homemade baked goods- salty, spicy, sweet and yummy!  A young college student with a heart of gold who spent a day baking, then dropped it off on our front step- thanks Julia!

Shan mothers me so- the perfect box of natural pain relief and organic and yummy treats- all the way from Tennessee- a true box of love.  

All the way from Germany- Mimi makes me a beautiful beaded necklace with my favorite blue color!  The angel is pure delight.  I'm so touched by this outpouring of love from others.

As much as I love my Jesus Calling devotional- receiving a copy of this was pure gift- I dip in daily for spiritual nourishment.  Thanks Annie for the connection that endures.  

Sometimes, you get to be the "other" for someone.  Rick and I were so grateful to help my friend Karla, give something very special to her grandson, Brody.  With Karla's permission, I'm posting this fun surprise, a gift from one very special hockey player- to another.  

Who are your others?  Who might you be an other for?  

so much love

I feel so loved right now... just look what love can do! 

I thought I was going to Vi to have Stella, my poor wig, cut and shaped again, on Wednesday.  I simply sat down in the chair and pulled crumpled Stella out of my hockey bag.  

That's when my friend Sue, came to me and let me in on a little secret, in the video below!

Did you see that?  Could you hear what she said?

I'll rephrase it here- essentially, Stella is going into retirement.  My sweet friend, Sue, had an amazing idea.  She shared the idea with a beautiful group of women- hockey moms, football moms, friends, neighbors, survivors, etc.  So they all came together and contributed funds to the purchase of a new wig- for me!  And friends, can I tell you how spoiled I feel?  Because this beautiful hair piece?  Is made with REAL hair!  Its soft and light on my head and such a pretty color!  I'm beaming.  I was so overwhelmed with the awe and surprise of it!  I never dreamt I'd have a piece made with real hair!!  This hair I can wash, and blow dry, and curl and style and spray to my heart's content! 

I think the only thing that kept me from sliding into the "ugly" cry, was simply the pain meds dulling my senses just enough to keep me pretty even keeled.  But that smile says everything.  

Vi is adding a few highlights in the front for some added dimension, and on Monday we'll go in for the final fitting.  I could truly start wearing it now, if I wanted.  

I don't know how, truly, to begin to say thank you.  These acts of kindness, of pure generosity- from a community that has seen me through, time after time.  My gratitude fills and spills, over and over again. I am one blessed woman.  

Thank you Sue for all of your brainstorming, and organizing, and the time you take to help me, and spend time with me, and truly uplift me.   A friend, Cheryl, said "Sue has such a servant's heart."  I couldn't say it any better.  And then to have all the wonderful women step up and so generously give of themselves.  Thank you to everyone! 

(Sue, on the right with her daughter, Julia.)

I sent a quick note to Dr. Panwalkar's nurse the other day for a new pain med script.  It was Dr. Panwalkar who called me back, within a few minutes.  His concern and compassion crowded every word.  He bumped the dosage up, and gave me enough pain meds to see me through.

It may take some steady pain meds to help ease the burden a bit, but I am more convinced than ever that love will ultimately see me through.  Love is what beats cancer, ever single time.  And you all just gave me a big dose of love! 

Brutiful...

It just comes in real.  It's one of those hard places, when you can't logically figure out where it came from, or when it all started.  I just know last week, a pain was searing my shoulder.  And I couldn't stop it.  

I take Tylenol and soak in a hot bath.  I prop my bed up to a reclining position and use my heating pad- on high.  Still no end to the dull roar.  I attempt to "choose joy" literally to embrace the heat and heal my back...

At times the pain subsides and I pray it's easing up.  But then its ripping through my back again, radiating everywhere.

My scans were fine in this area.  I can cross this out of my head.  And treatment was two weeks ago- shouldn't be side effects- not like this.  How do I even call the doctor?  I didn't fall.  I have no infection or fever.  My counts are good.  What is there to even check?

I look through my bin of meds, with the Oxycodone of long ago, singing out to me, "pick me, pick me."  

Oh how I despise you.  Oh how I love you.

I slam the drawer shut again, thinking, I'll just grit my teeth and bare it.  I promise Rick if it isn't better by the next morning, we'll call in to the doctor.

I take my sleeping meds and off to dreamland I go.

It's bearable the next morning and I quietly switch back to advil and hope.  Why is this even happening? 

But just hours later, I go to toss the ball for Crosby and there it is again... searing, blazing, all through the corners of my back- have you no mercy?

I crumple into bed, angry, spent, hurt.  

Oh how my mind narrows.  Throb, throb, hurt.

Oxy, are you my only hope right now?

I do it. Its getting late.  I take 1 old expired 5mg pill.  I sneak my eyes past the expiration date of 2013.  Its good enough for now.

Hours later, my mind is dulled, but the pain is razor sharp.  I'm so sensitive to pain meds, if this isn't helping?  What next? I don't want to go to the er.  What can I do?  

Surrender, and embrace it, the real and the hard.

Reluctantly we call the on-call Onc.  

But I'm shaking my head, because it plays out just as I thought. 

Despite all the explanations... he says...

"Come in." 

I don't want to come in, therefor he can not help me over the phone.

We ask how many more pills I can take of the expired stuff?  More if I need to.  Just take the old stuff.

So I do.  I take more, and succumb to sweet sleep.  On and off over the next few days, I take the Oxy when needed.

 I see Dr. Panwalkar in a few days and I know I'll be seen, and heard and helped.  

In the midst of it all, it's just a simple buzz on my phone that I've laid on the table far from where I rest.  But when I see the name "Ria," and see the attached files, I can't help but sit down at the computer and look...  she has beautifully edited all of the photos from our shoot with her.  

When life yields the most brutal, sometimes smack dab in the middle of it, is the most beautiful.  Ria's timing was impeccable.  She's gifted us with more than she can ever fully know. I sit and cry through photo after photo- reliving all the moments.  The sunshine.  The laughter of the boys and their silly antics. The beauty of God's creation.  The love shown.  The sharpness in my shoulder magnifies my ability to see beauty and abundance.  

I truly understand Glennon's idea.  Its brutal.   It's beautiful.  And its real, and hard, and well.  

I'm sharing just a handful of photos, with hopes to come back and share more soon... 

~all shall be well~

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...