after all the words...

I've been longing for some clarity, and ability to sit comfortable, and write to my heart's content.  The urgency on so many levels enshrouds me- how can I not write it all down per usual?   Yet, I feel disappointed when first days go by, then suddenly its weeks, and that chunk of me that is expressed through writing? Is stumped, and stifled in some way. 

So I'm just going to try.  I'm standing by the water with my toe hovering inches from the edge, wondering if it'll be too cold?  Will it be rocky and I'll slip?  Will my feet cramp?  This isn't really me- I simply know if I'm at the edge of any body of water- in is the only way to go.  So this is me - jumping right in.

I saw Dr. P yesterday and the first thing he asked me was about the tv story!  So here is the link to the WDAY story as promised many moons ago.  It was a precursor to our spectacular week of hockey.

Kevin Wallevand is a gifted reporter.  I think he and the photojournalist, Devin Krinke spent nearly 2 hours interviewing me.  Then Devin spent 7 hours, editing all the content down into the beautiful story.  I'm in awe of the sheer magnitude of their talents and work!  And shaking my head- they picked me- still humbles me to this day.  

WDAY story here:  Moorhead Hockey Mom Puts Cancer Treatment on Hold to Attend State Hockey Tournament.

The outpouring of support and love we felt was immense.  They even ran the story again as the first story of the newscast at 10 o'clock that night.  I was already in the midst of hockey in St. Paul, so I didn't see the story as it happened- only much later when a link was provided.  But then I started receiving texts from people in the Minneapolis area telling me the story was running locally too.  So cool!  I love that it highlighted our hockey community to an even broader audience.  

 So lets get to the main event- truly these are just a few photos from our spectacular weekend at the State Hockey Tournament.  Here is a pic of all the moms who wore their sons jerseys and we were gathering while waiting to see our boys.  Are those faces not beaming?  Sheer happiness, that I don't think any of us will soon forget.

This was the first night, at the Xcel Energy Center.  There's Nolan, putting out the back of his hand to give a high five to whoever the young boy is reaching out his hand.  Its surreal as a mom to see him being the one sought after because it's  the very thing we've watched him do for so many years.  And my husband who has had the pleasure of shooting pics at the Xcel for years, knows just where to go to get the best shots.

Then there is this... the first night when the players get introduced before the start of the game... the camera zooms in tight on their face, and so many of our boys said hi to Mom, and Dad, or Grandpa and Grandma- I have yet to actually hear Nolan- and yet I was told he said hi to his mom.   But watching it in person, was the best possible experience ever.

There goes our number 7! 

How cool is that to score a goal in front of a sea of orange!  The arena was packed!  The far biggest crowd our boys have ever played for!  Each game had around 19,000 fans! 

Rick climbed up to the catwalk area to shoot down for this pic... 

Here are just some of our Moorhead fans... people we hadn't seen in years came out to the game.

Another big celebration- as Moorhead goes on to win their first game against Hill- Murray!

Someone got the crowd into the wave and I was impressed with the number of times it went around.

Suddenly it seemed, it was the night of the championship game- and WE WERE PLAYING IN IT!  Its our first trip to the State High School Hockey Tournament in quite a few years,  and not only did we win our first game- but we went on to beat another Cities team to win the second game and go right on to the Championship Game!

Another of Rick's panoramic photos of the whole rink.  If I closed my eyes it was as if we were at a Wild NHL game, but when I opened them and looked around- it was filled with familiar faces.  So many surreal moments stacking up on each other.

But we were outmatched this night.  Grand Rapids just had a bit more of everything, and we couldn't get it done... we took second place, with a 6-3 loss.

It took awhile for the team to come up from the locker room.  We know these boys play with their whole hearts- and those were some pretty sad and heavy hearts that night.  And yet, the enormity of the experience wasn't lost on them either.  They're young and their fires have been fueled to be back at this tournament again.  I got some really big hugs from this kiddo, and my mother's heart couldn't be any more proud.

Plus, the biggest surprise and bonus to the whole tournament?  Were having Kristi, her son Christopher, and my friend Elizabeth come to the 2nd game, and then they brought their families to the third!  They're both life-long friends of mine, and were also former Spuds, and we had a wonderful time hanging out together at the arena.

After the championship game, the team was gathering back at our hotel.  Rick is walking in just behind them... and look at the cool reception they got! 

All up and down the floors, are Spud fans, cheering for our boys! 

I wouldn't trade the experience for anything.  But it wasn't easy on me by any means.  I spent any time outside of being at the arena, snuggled into my bed with my heating pad and blankets.  I slept long hours, too fatigued to even try and leave my room to socialize.  I had so many wonderful invites, but could not say yes to any of them.  Mid-morning the next day we packed and left for home- knowing infusion day was just around the corner.

Despite how I look, I'm still struggling physically more than I like to acknowledge.  Its easier to say, "I'm fine," because in that moment I may be... but those moments are fewer, and more time lapses between them than ever before.

But so many, are doing so much, to see me through.  With my blood pressure going so low last week, they decided to add in a bag of fluids.  And because I wanted to get to my stage iv group, I had limited time.  So my nurse was a real trooper.  She figured out how to attach the second pump to my pole.  Then we hung the fluids along with the chemo and the anti-nausea.  I was quite a sight trying to maneuver the crazy pole with the constant need to use the rest room.  But I got through... and made it to group.

Despite all the time I spend in bed, or in my recliner, or on the couch... my doorbell dings non-stop.

Like these beautiful roses that had been part of the ice show.  Judy used to bring them to my mother, who beamed from the sight of them every time.  Now its my turn, for two years Judy has brought these glorious flowers to my house and I promise you, I'm beaming too.  Its such a brightener to my days.

I have oodles of things I could share, but I struggle in keeping up.  Please know we love the visits, the food, the texts with offers of all kinds of things.  Being as weak and fatigued as I have been, it can be a little isolating.  So I welcome visits, and meals, or treats.  We're deeply grateful of how thoughtful everyone is.  I think I can definitely say, the advice to just go do something for someone with a chronic illness- is spot on.  It's really easy for me to say "I can't think of anything I need right now..."  But if you just offer and do something, its well received.  

Yesterday, I saw Dr. Panwalkar.   He walked in with a big smile on his face, in a really good mood.  Its been 6 weeks since I've seen him, and I was happy to get to talk about some of the big picture issues.

So when he mentioned with a big smile on his face, that I sure looked great- his whole demeanor broke, when I told him the truth.

"But I'm not feeling well.  I haven't in a long time.  And what I truly wonder?  Is the treatment just causing too many side effects?  Or is the cancer progressing?  Because I've been struggling with food, both throwing up, and only able to eat a few bites at times.  And my pain has not subsided in the least.  I haven't missed a dose of morphine in weeks.  And while the pain is no worse, its not showing signs of getting better."  

And he listened, and folded his arms across his chest.  He sat astutely, for a long time, thinking.  Then he started making a list...  "well here are what we have left for treatments..."  

Carboplatin, Doxil, Affinitor with Aromasin, and Ibrance.   

He points to the Carboplatin and says it only has about a 20 percent chance of even working- so its not high on his list.   I love the Affinitor and Aromasin combination- but it would take 3 months for it to work... can I tolerate "belly pain" for that long, he wonders? I wonder too...

He is open to any of the combos and ready to let me decide.  First he'd like to scan, to see what is really going on, but then he'd switch to one of these other treatments, if necessary.

And while he asks my preference and I selfishly tell him I'd love the Affinitor because its a daily pill and its like Arimidex that I did really well on... he is willing to do that... but his preference?

Is the Doxil.  Otherwise known as Adriamyacin.  Or "the red devil."  But he feels the most confident with this one.

And its this one I will choose.  

And this leads me right into telling him, that it's been 6 years that he has seen me through.  And I think I get the biggest, most heartfelt smile from him... and when we stand and he asks if there is anything else- I simply ask for a hug.  Then I get his hearty laugh, and a hug that is tight, and real,  and somehow it leads me all the way down the hall, right out the door.  Sometimes all we need is someone to walk with us, so we can take that very next step, whatever it might be.  

So I've pondered these words for a long time...  they could be about my life... or they could be about my boys... or superman.  But maybe, just like me standing at the edge of the water- we try anyways.  I may not have been able to sum any of them up with all the writing I've done- but when I get the letter below?  Well... you'll just have to read for yourself.

Colton agreed to let me share with you the letter he wrote to me for the year-end hockey banquet they held for us mom's this year.  It's officially my last year of Moorhead Youth Hockey, as Colton will move on to the high school program.  I could't attend the event,  it was chemo day- but the moms graciously included Colton and I in all the cool things they did.  One of those things was to have our boys write a letter to us about... well I don't know the words given to them... but Colton wrote this in the last 15 minutes of his Study Hall....  

Sometimes, its enough. The few lines, the whispered words, the hugs, all of those tiny moments can add up to simply enough.   

Colton, you couldn't have written it any better!  You make ME feel like the luckiest mom ever...  I know there were other moms sniffling when they got this kind of letter too- its our hockey community that helps our kids grow, while we the parents grow right alongside of them.

I'll have my PET scan on Friday.  How can I pray for you?  I have hours of solitude while waiting and I'd love to pray!  Love and blessings to everyone! 

"All the Pretty Things,"

Ever since the package with the book arrived in the mail, I've yearned to lose myself in the writing.  Coming from my friend, Linda, I simply knew I'd love the book.

So with an ache in my back, and my bed calling me early one evening a couple weeks ago,  I found myself immersed in reading from the first sentence.  I read late into the night, not wanting to read too much, yet doggedly turning page after page, longing to know the whole story all at once. 

But that ache in my back?  Somehow turned into a searing, teeth-clenching, pain.  It gripped the muscles in my lower back, with spasms of mind-numbing sensations.  

After attempts with Advil, and Tylenol, the heating pad, and then ice, plus massage from Superman failed to assuage the assault on my back I finally turned to Oxy.  With my mind numbed, my speech slow and plodding, and the pain masked by it all- days turned into nights then faded back to days- and I was lost in the haze of it all.  The book sat, beckoning me to shake my head free from the fog.  But every time I came up for air, I was mired down again with spasms rippling through my back.

I knew I would see Dr. Panwalkar soon, I just needed to get by a few more days.  Rick tried to get me to go to the ER, but I stubbornly clung to the idea I'd persevere.  My scans were clear, in my back area.  This was not cancer.

It was my week free from chemo.  It was sunny outside, and the temps rose into the 30's, making it warm for January in Minnesota.  How could I not get better?  

Somehow, I cobbled together a way of managing.  I sometimes could string together hours at a time, in which I functioned at near normal levels.  I'd dive back into the book, madly in search of the pen to highlight the phrases and paragraphs that resonated so deeply with me.  How could she know my pain?  How could she breathe such life into the brokenness I endured?  Edie's story is not mine, and yet her ability to make me feel as though I had walked in her very shoes, and her in mine, was uncanny.  

I look down at my hands, grasping the pen I used to highlight, wondering away.

At the same time, I've been knocked down, Nolan is struck down with illness too.  He fought basic cold symptoms all one week.  We use our Thieves and Lemon oils which keep him going, and some Emergen- C each day.  But its a Thursday night after hockey practice when he comes into my room,  feverish and chilled at the same time, with a bad headache.  Rick drops everything to take him into the doctorr.  Nolan's lymph nodes are swollen all around his neck, and they need to rule out Mono, and then they swab for Influenza and take blood work.  He arrives home with a positive test for Influenza and a box of Tamiflu.  He sleeps long hours, his body going from fever, back to aches and pains, then chilled and congested and miserable again.  

  

While I'm quarantined away from him, battling my own pain,  I finish Edie's book.  As I get up to put the book away, the pink pen flies out of the pages into my lap,  as my heart warms with the love that surrounds it.  

I'll never forget his sheepish smile, and the playful way his eyes beamed, even though he looked away as he handed me this pen, just days ago...

"Mom..."  Nolan says, his cheeks curl into dimples and the smile originates from somewhere deep within him.  "This was supposed to be for you at Christmas.  I made it in wood shop.  We learned how to use the lathe, but I kept getting the bottom piece too thin and it broke on me.  I had to get a new one and start over with the teacher's help." 

  I'm melting on the spot as I feel the weight of it in my hands.  It's then that it I turn it over and see the pink breast cancer ribbon.  It seals it.   It really was for me.  

I reach up to give him a hug and whisper an "I love you, " to him.  He hugs me back, all the way around, and whispers to me, I love you too, Mom."  

Days later I see Dr. Panwalkar.  We talk about the pain in my back and he examines me.  He thinks for a long time, and then says I should try a muscle relaxer for awhile.  He warns me it'll make me sleepy and more foggy in the head perhaps, but should help release those muscle spasms.  He also says he wants to see me again in a few weeks, and we'll also talk about scans soon.  The last little tidbit is that while my blood work shows low counts- he is still going ahead with treatment- because the good news is, my tumor markers have dropped down to just above normal.  

~all shall be well~

Thank you to all who have reached out to me!  It humbles me so to know you come in search of me when I'm quiet for too long.  Your prayers, cards, emails and texts, do much to lift my spirits.  So grateful! Love to you all~ 

Part of me now...

Happy (a bit late) Birthday, Superman.  So thankful, you share your heart with me!  Aren't the heart shaped sparklers cool?  It's like love on fire, literally.  And here we are, side by side, through it all. 

Would you believe the sparklers were a part of a"goodie bag" for my first role in a documentary?  If you go to imdb, and google my name?  The documentary I was beyond honored to be a part of,  "Part of me Now: Living With Breast Cancer," will pop up.  We're just waiting for the director, Emily Gerhardson, to announce how we can all see it.  She's done an amazing job from start to finish in getting this project out into the world- so many film festivals it has gone to- we're just hopeful it gets picked up somewhere!  

Thanks to Ria for capturing this at the end of our photo session last August- somehow she always finds the best light.  

Speaking of light- I've spent days and days going through photos we took in and around Pittsburgh.  The light was simply stunning and the leaves were in full color.  I've formed such a deep connection to feeling "alive," when I spend time in nature.

 “I felt my lungs inflate with the onrush of scenery—air, mountains, trees, people. I thought, ‘This is what it is to be happy.’”

—Sylvia Plath, The Bell Jar

So many places and activities we savored in Pittsburgh have continued to stay with me... despite how much I had to concede and surrender along the way.  It became quite clear when we arrived back home, the toll so much of this "journey" has taken on me.  Two days after we arrived home: 

Tuesday,  November 1st, 2016

Roger Maris Cancer Center

He strides into the room, his voice booming, "Hello, Vicky, how are you?"  Then he stops mid-step.  One look at my face, and his whole demeanor changes.  I have yet to truly say anything, but he reads me in that moment.

"Ohhhh, what is going on with you?"  Dr. Panwalkar's face falls from smiles, and registers concern, as he scans my face.  His voice softens as he sits down, but turns to look at me as I try to answer him.

"I just don't seem to bounce back like I once did."  I shake my head, and say, "I just don't know what is going on with me."  He starts to run through the list of questions about fatigue and appetite, sleep, and breathing.  

My appetite is good- but my tolerance for so many foods is limited.  I feel sick, after I eat, with a tenderness in my lower left side.  I still eat.  I'm just never sure what will set my stomach off.  I can certainly use meds to calm it back down. But soon the gnawing sets in again.   It's just a vicious circle.  I can't see clearly enough to cut a clean swathe through the maze.  And really?  The bigger question?

Are my symptoms treatment related?  Or is it cancer progression.  My blood work actually looks good.  Although my tumor markers have climbed yet again.  

He thoroughly examines me, asking questions as he goes head to toe. 

He's nodding his head when I offer, "that small inner voice is telling me to scan."   

 Dr. Panwalkar helps me sit up, then goes to sit and begin the process of garnering approval for a PET scan, and a brain MRI.  Soon, we shift to discussing what a new treatment might be.  

He mentions going back to Taxotere, since I had a good response to it, and we quit before it stopped working, due to my intolerance for the side effects.   He also mentions another chemo agent I'd done before- Halaven.  

And then, mustering much enthusiasm, he mentions the one I've blocked from my mind- Adriamyacin- also known as "The red devil."  

I'm nodding my head, understanding the gift of knowing I have options, while also sliding right into denial, so that I don't have to focus on the toll those options can take on a weary body and spirit.

He also mentions looking into immunotherapy trials and asks where I'd be willing to travel?  "Anywhere," is our answer.  But just days later our insurance agent informs us my new policy will only allow me to have treatment at Sanford in Fargo.  I try to cling to gratitude that I can still at least find a policy that will take me on, despite its limits, and expense.  

Dr. P and I conclude our time together, and he ushers me out of the room and walks with me to the infusion waiting room.  He stops and motions towards the seating area, but then looks at me, and rubs my back as he smiles and simply says, "See you in 3 weeks. We WILL get to the bottom of this."  

So I get up each day and I try.  Some days it's merely hours later, and I'm back in bed, down for the day.  But each day I push a little more.  

After a day of resting at home, I take a chance and attend the steak fry fundraiser for the Moorhead hockey team.  I even managed to eat half my meal and felt so encouraged to see so many friends attending.  I manage to clean house, spend time outside with Crosby, and work on this blog post.  Stringing all of these moments together crafts a sort of "seat belt" that tethers me in place, for the curves we endure on this tenuous ride.  

At the end of our trip to Pittsburgh, we go to say goodbye to our friends, Matt and Bridget Cullen, after the Penguins come away with a big win. Smiles abound.  We've had such a great trip.

Those light-filled eyes, and big smiles, from the bigs and the littles, melt my mother's heart.

We're pulling out of the parking lot after the game, when the car with the little boys stops.  Their Dad says, "I have some pretty sad young boys who have requested just one more hug from the big boys?"  

He has taken the time to stop, and they all unbuckle and tumble out of their car seats... as my big boys jump out of their seats for that last big hug.  The littlest guy looks up at Colton, tears streaming, "l'll miss you!   Please come back again soon so I can see you!"  

Out of all the moments, so very many of them, its this one I tuck away in my heart forever.  

My brain MRI will be Thursday with sedation at 1 and scan at 2.  Then the PET scan will be at 730 am on Friday, with injection at 730 and scan at 9.  

How can I pray for you?  I will bring a list and pray fervently for anything on your heart and mind.

~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...