Wednesday, November 30, 2016

all that really matters



He crawled onto his Dad's side of the bed the day after Thanksgiving.  

What's up, Colton?  I ask, my voice thick with drowsiness.  

He yawns, stretches and pulls the edge of my blanket over the top of him too.

"I'm booorrreeeed." He murmurs in a long sigh.

"What would you like to do?"  I ask.

Silence.

I know he'll have hockey out of town the next 2 days, and I'm grateful he'll be busy.  But what is it he is searching for right now?


So I simply begin telling him about all the stuff we used to do when he was younger.

"We used to bowl together, do you want to go bowling?"  I ask... 

"nah." He replies.

Is there a movie you'd like to see?

"Not really."  

"Hmmm," I say, "what else?  "We could all put on our skates and go find open ice somewhere?"  He gives me a confused look.

"We used to go all the time."

"Even you, mom?"  he asks, incredulously.

"Yes,"  I laugh.  "Even me.  It wasn't pretty.  But those ten dollar thrift store figure skates managed to get me around the rink a time or two.  Thank goodness for toe picks!"  

Suddenly, I'm flooded with memories of all we used to do.  He was only in 2nd grade when I was diagnosed.  As an 8th grader, I realize having a sick mom, is all he has really known.  And sadness encroaches as I fully know, there is so little left that I can actively do these years later. 

"I'm sorry buddy.  It stinks when your mom is so sick, more and more often."  

But as I utter my regret, my brokenness, my inability to reassure him jams my throat.

It's then that he sits up, leaning towards me,  and begins saying, "Mom, Mom, MOMMMMM."  "It's okay.  All that really matters?  Is that I'm here.  With you."  That's all I really need, okay? 

He comes over to the side of the bed, and folds himself over to hug me.  He has grown 2 inches since July, the last time we measured him.  But it's his growth in wisdom beyond his years, that surpasses his size.   I love him so...


*****************************************************


I met with Dr. Panwalkar last Tuesday.  He had sent me a link to the PET scan report, but I couldn't get it to load.  So I shook my head "no" when he asked if I already knew my status.  

"I assume its grown in my lungs, and somewhere in my abdominal region?"  I tell him.

"Well, kind of he says, hesitatingly."  

We're off script a bit, and I've jumped the gun by asking.

So he loads the old and new scans side by side and we begin zooming through the images.  It looks kind of like a 3d movie with my body playing the lead role.  But as we reach my lungs, the glowing yellow "cancer activity" rears it's head.  So my lower left lobe is showing more uptake, meaning more cancer activity.  I don't even bother asking how much growth, or increase in activity.  I simply don't feel the need to know any great detail.

So we continue on through the scan, finding a spot on my esophagus which likely could acid reflux or heartburn.   My bladder is also glowing, but its normal to look like that.  PET scans are not easy to read.

So when we get the to the next large glowing spot, I'm perplexed.  

Reading me, as he does so well, Dr. P explains its my uterus.  And its IN my uterus, not just on top of my uterus.  The words he carefully uses, are "large mass."  

Oh boy.  

But as I think about it, I have to wonder, "How do we know what it is?"

He nods in agreement, stating, "We don't."  Its highly unlikely for breast cancer to spread to your uterus.  What we really need to do is biopsy it.  

"So it could be another kind of cancer?  Like uterine cancer?  Or something else?"

He quietly nods his head.  And we sit in silence a moment or two, letting it sink in.  

Then he shifts our focus, and says "I think we need to start new treatment again. How do you feel about Taxotere- weekly.

This is what I've expected him to say.  So I counter offer,  "How about Halaven?  Could we start with that?  It helped my lungs last time and we stopped it early."  

He smiles, and says enthusiastically, "OK."  It's good, too.  Lets start with Halaven and restart Herceptin again.  We'll do two weeks on, and 1 week off of treatment.  Its that one week off, that gives me a bit of relief.  

"Fatigue may be more of an issue, and your counts may go low, he says.  Most of your hair will fall out.  And sores are likely to form in your mouth.  But it worked well for you last time!" 

He always diverts my attention back to the positive I can hang onto.  He walks me out to the waiting room and then leans in to hug me around my shoulder before he briskly walks away.  

******************************************************


I finished my second dose of Halaven on Tuesday.  I'm bumping up against nausea and inability to eat at times.  I'm worn out, despite how little I seem to accomplish most days.  

But two things keep me going.  Well, 3 actually.  And they are called Nolan, and Colton, and Superman.  I just keep striving to find new ways to be in their world, no matter what it takes.  Sheer will some days, and God given grace on others.  





Rest in peace my sweet friend, Colleen.  Your sharp wit, brilliant intelligence and huge compassion for all, will be so dearly missed.  In true Colleen fashion I heard you made one more trip to Target, insisting on pushing the cart and walking, despite how tiny you had become.  Tiny in size maybe, but you were mighty in all other ways,  and will be forever missed.  

If you're so inclined,  prayers please, for Colleen's husband Marlon, and their two precious daughters, just 5 and 7 years old- Lizzie and Abbie.  They'll be so honored. 







~peace and love to you all~










Tuesday, November 15, 2016

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~
















Tuesday, November 1, 2016

Pittsburgh, Primanti's and Penguins...





source unknown



 My mother would have turned 81 the day we left for Pittsburgh.  As we loaded the car,  I noticed the October sky all lit up and could only smile.  I breathed deep, heralding in as much tranquility as I could,  and we left to pick up our precious cargo.




Meet Minny, who would be traveling across the country with us to her family waiting for her arrival.  Oh those big eyes.  



Perhaps one of my favorite pictures- obviously Colton had gazed into those eyes as well.  


Traveling with a dog was hugely entertaining for the boys and gave us all something to help with many hours of "together" time.  


Realizing that the University of Notre Dame was just a short stretch off the toll-road, gave us a much needed reprieve for a bit.  It was sunny, and full of fall colors, and the campus was beautiful in so many ways.





We arrived early evening in Pittsburgh, and brought Minny to some happy family members.  We had a super-sized Sunday coming up, and were off to bed early.





The next morning we moved to a hotel in downtown Pittsburgh, filled with football fans.  




We heard it being discussed that the subway was only a few blocks from our hotel and it was free.  It was easy to find, and a fun new experience for the boys.  


After days of researching online, we had Steelers tickets almost fall in our lap- and they were way better than anything we had looked at.  It was truly a day long experience- one Nolan has dreamed of since he was little.  It would be our first NFL game.



The subway took us right to the front gate, of Heinz field.


We felt like we were sitting on the field.  The sun was gloriously warm, and despite the Steeler's quarterback, Ben Roethlisberger, being injured, the fans were die-hard and very entertaining.  I wondered at times if we had somehow walked onto the set of a Real Housewives show, with the "competitive banter" flying back and forth between some Patriot fans interspersed with the Steelers fans.


We hadn't thought to bring our Terrible Towels, but it was really cool to see them in person.




A friend put me in touch with her friend living in Pittsburgh.  He said if you want the authentic Pittsburgh experience, you have to eat at Primanti's Bros.  Its a sandwich with your choice of meat- from sausage to salami to knockwurst- but the sides of coleslaw and crisp french fries?  Come right on the sandwich.  Its clever, and more tasty than you can imagine.  



The game didn't end with a big win for the Steelers, but we had a wonderful first day in Pittsburgh.  We have so much more to come... but first... 



It's infusion Tuesday already.  I see Dr. P today and go over my lab results.  

My spirit is strong, but my body can't always keep up.  The fatigue nags at me, food upsets my stomach, and it slowly has occurred to me,  it may never be any different.  Sometimes, the more I try to hang on to, the more slips through my grasp.  







So I'm just going to keep breathing deep, staying in today, and trying to surrender the "knowing," to the one who knows all.  
















When you get lucky

When you get lucky

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