Monday, December 28, 2015

Christmas 2015










Christmas wasn't found under our tree this year.  It quite literally walked through our front door, time and time again.  Plates of homemade cookies and treats.  Casserole dishes, crockpot meals, yummy prepared dishes of all kinds, brought to us by friends and family.  At a time when everyone is so busy preparing for the holidays- our family was uplifted, and surrounded by hope and encouragement each and every day.  

Our mailbox was overflowing with envelopes and cards and gifts that left us speechless.

And the anonymous gifts- the hockey player light- so cool- no names attached from the sender- but deeply felt surprise by us, and gratitude for the thoughtfulness and pure cool factor! 

The gift card to Target, from the Orchestra, at Horizon Middle School- we're so deeply humbled they took up a collection and picked our family as a recipient!  

And so many other things, big and small, that touched us so.


I have yet to have a full day where tears haven't fallen in sheer humility and gratitude.

"We are sick and tired of being sick and tired.. Definition of courage: Tell your story with all your heart."

My last full day in New York City, I was honored to be asked to share my story on camera.  The room was filled with producers, photographers, and hair and make-up artists- although Stella has her own thing going that doesn't adhere to change very well.

I was asked all kinds of questions about what it was like living with metastatic breast cancer?  What was the message I wanted to share?

I'm not sure the exact words I used, but I shared with them my thoughts as we had descended upon the streets of New York.

It would have been quite easy to step into the flow of walkers, and be moved along en masse with them.  But we were walking by so many points of interest.  I had to remind myself to slow down, and look around, and just be in THIS moment, instead of rushing off to the next.  One of my most favorite photos happened of the bright yellow and red umbrellas and the shiny rain soaked sidewalks, because we took the time to savor the moment right where we were. 

We can all expand the time we have- live more, feel more, be more in the tiniest moments of the day.  And feel grateful for them- instead of trying to extend our time and cross off one more thing on our to do list.  Sometimes the most important things aren't even on our list! 


I told them my wish was to "live my legacy, and not just leave one."  

At some point the room became very quiet.  The female producer had stopped asking questions, and a male had stepped in.  And when I looked up, I realized its because she was crying.   And he simply let me keep going.

I sort of lost my train of thought, and then we all laughed.  We'd been shooting for a long time, and they felt they had more than enough to use for their foundation.

I got up to go, and the female producer came over to me and asked to hug me.  

We ended the conference at 5 pm, and filled our night with a bus tour of New York, and a stop for dinner at the Empire State Building which we toured afterwards.

It was a beautiful end to a wonderful 3 full days of adventure in New York City.


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

We're off for a few days of hockey.  Jim is staying with Crosby who has had a rough go lately, but seems to be stabilized  again.

MRI and PET scan results should be back soon and I see Dr. Panwalkar next week.

"All shall be well" 














Thursday, December 17, 2015

When one belongs... New York



“One belongs to New York instantly, one belongs to it as much in five minutes as in five years.” ― Tom Wolfe

Day 2

Our shuttle bus to the breast cancer conference wasn't coming until 12:30 pm the next day.  So that was pure bonus for us to be able to get up early and head out.  We wanted to visit the 9/11 Memorial, and with Grand Central Station just a few blocks from our hotel, we set out on a walk to find it.  




We knew it was morning "rush hour," and we were sucked right into the midst of the crazy masses of people, making their way through the city.  We stopped a time or two for a quick photo, but needed to keep going so we could get where we wanted to go.

And thank goodness, for Chery and Jenna being able to figure out the systems.  I have such an inability to process very much with the high amounts of stimulation going on around me.  So they were my most excellent navigation partners, and managed to guide me through the chaos really well. 

My first experience of the New York Subway System, was when I was 17 and traveling with our Youth Group.  I recall how it was filled with homeless people, begging for money.  I remember the strong smell of urine and body stench, filling the air of the underground tunnels.  I felt unsafe, and scared to get too close to anything.


What a difference this time!  The Subways were much cleaner, with no discernible stench, and no homeless begging in the tunnels either.  I didn't feel uneasy in any way.  


In fact, we got a kick out of the humor in the signs along the inner walls of the train. 


We had asked several people where we should get off the train- and they were spot on.  It was just a couple of blocks from where we exited the train. 

It was raining steadily, still.  Misty and grey outside.   As we walked around the reflection pools, there was a solemness in the air around us.  We didn't have enough hours, to fully go through the museum, but we took our time walking the grounds, around the pools, still trying to fathom what had happened.  




We could see we were near a body of water, just a few blocks away, and so we decided to keep walking down to the edge, to see where we were at.  

Just off to the left of this picture, was a very faint outline of the Statue of Liberty, and we saw ferry boats cruising by us going to and from that direction.  But it was too foggy, to see very much.


Despite the steady rain, I was entranced with the trees still having leaves of multi colors, in so many places. 


With our need to get back to the hotel for the shuttle, we started our walk back, stumbling across a pizza place that made for a quick and tasty lunch.  We made it back to our hotel, in time to get on our shuttle bus and drive the 20 minutes to the conference site.






We drove up to the site, and were taken up to the registration area.  It was a beautiful, modern building, with contemporary decor, sitting on the water's edge.



We started off with some informal gatherings as people registered, and we found a table filled with healthy snack options, that was replenished continuously. 


These were chairs hung near the windows overlooking the river.  


The sights outside were spectacular.  (Photos with sunshine taken the last day.)


It wasn't long and we were seated at tables as the presenters began the breast cancer conference. It was truly humbling to me, to be surrounded by people who saw the need for programs for those of us with stage iv, metastatic breast cancer.  It was through the Pfizer Avon Foundation, that all of our programs had garnered funds to put our programs in place.  It was truly inspiring to see Oncologists, and Psychologists, and Patient Navigators, who truly understood the needs of those of us living with stage iv breast cancer.  The afternoon flew by.  


That evening, we had been invited to a reception followed by a formal dinner, to wrap up our first night.  It wasn't until we ventured downstairs, and were shown the door to go into the lower part of the building that I saw this jaw-dropping sign.  Would any of you happen to be a fan of the tv show on Food Network called "Top Chef?"  I would!!  Were we really going to be eating at a Tom Colicchio restaurant?  


We were!!


We not only ate dinner there, we had lunch there the next day and with better lighting I managed a few photos.






I loved hearing all of the words being used that sound so fancy in the show- and now I can say- taste so yummy!  We had a gastrique of one kind or another, and amuse bouches were served before we sat down.  We got the cute tasting spoons, with one little bite of really good flavors and different spice combinations that made for an interesting dinner experience.  I was so excited to return home and discover that the newest Top Chef show,  has just started! 

So with our bellies full, we were excited to walk over to Rockefeller Plaza and find the tree that we had heard was already lit. 

I knew I was running on empty.  My legs feeling heavy and achy.  But I didn't want to miss out, either.


So we walked.  


And walked.

Getting nearer and nearer.

Until suddenly there were barricades everywhere.  And we were stuck on the wrong side of them.  It seemed as though there were thousands of people packed along the streets, not able to move anywhere.  

It seemed, everywhere we went, people were helpful in telling us what to expect.  There were a multitude of police officers, and firefighters everywhere.  One in particular was very helpful to us.  After waiting for a long time for people to move, and nothing happening, he gave us an idea.

"Walk down the block, and ask if you can go across the street to the TGI-Fridays on the other side of the block.  That should get you across, then through."

So we took off, walking down, and approaching a young officer.  But she was firm in her response, "no." The barricades wouldn't be moving for at least another hour and we'd just have to wait.

So we ventured back towards the group of officers.  And Chery in her insightful and professional ways, spoke very softly in the officer's ear, glancing at me, and then telling him why seeing the tree this night was so important to us.

He had surmised this might be the case, nodding at the breast cancer conference bags over our shoulders.

I was too tired to shed tears, although I could have easily done so- his response was instantaneous.  In short order, the barricades parted, and we were ushered through.  But he didn't just leave us to fend for ourselves, he escorted us down the block and 1/2, clearing the way,  to the area where we could view the tree.  When other officers would call out "hey, you can't go there!"  He would affirm that we could, that we were with him and it was ok.  And we'd be allowed to keep going.  

All I had were images flooding my head, of 9/11, and how New York police officers and fire fighters had led the way for so many.  And now they were leading me, for a tiny reason, yet it was a moment filled with enormous humanity.

I felt so humbled, and honored.  




We tried to get closer, to see the skating rink, and the rest of the decorations.  But a private party was being held, and we were turned away.  Still, we had gotten really close and couldn't have asked for a better experience.  

I'm clinging to the reminder that the tiniest acts of kindness to someone, can leave the biggest impact, without us even fully knowing. 

We tried to hail a taxi for the ride home.  But they were all full.  Eventually we realized we could walk the rest of the way.  I just remember walking around the corner, and suddenly there was the hotel.

As I stumbled into the elevator to go up to my room, I squealed when I saw my fitbit reading for that day.  We had surpassed the 9,999 from the day before. We had walked 14,654 steps that day- or the equivalent of 5.55 miles!  

I hardly remember finding my way into bed, and going to sleep.  I just prayed for rest to find me, as the next day would prove to be a very big day as well.  

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


I had infusion on Tuesday and it went fine.  I do seem to struggle more with bouncing back as quick as I'd like.  But just when we face these hard things, it always seems we're rescued in some way.

Our hockey community, has shown up, and started a meal train for us again.  It's so helpful!  And yummy.  We've had sugar cookies show up, and banana bread, and pasta, and tacos, and a beautiful floral arrangement.  And rides given to Nolan by his teammates. My thank you's are slow to come, but our gratitude is instant and mounts daily.   

~All shall be well~



























Friday, December 11, 2015

New York


“I look out the window and I see the lights and the skyline and the people on the street rushing around looking for action, love, and the world's greatest chocolate chip cookie, and my heart does a little dance.” 


This was the view out my hotel room window.  We were on the east side of Midtown Manhattan in New York City.  




 We had a good chuckle when checking into the Tuscany, where we were staying.   We weren't presenting, at the conference, and so the woman checking us in said she saw that it seemed our group all had the standard corner rooms on different floors.  But when she went to check me in she said, "Ohhh, but apparently Vicky is a VIP, and she actually gets a suite!"

So we ran right up to my room, laughing at the thought of ME being a VIP.  So the suite was really cool!  I had a fun sitting area with a sectional couch, a big tv and a corner table and chairs.  There were two huge walk in closets, one set up with an ironing board, iron, and tons of hangers.  The bathroom had a brand new tiled shower with several heads that were so therapeutic, I didn't want to get out.  I would venture to say, those of us with Metastatic Breast Cancer, were the VIP's given the fancy rooms.  I would have to say the Pfizer and Avon Foundation, was very generous and accommodating to our needs.



We met each morning down here in the lobby for coffee.  The modern decor was seen throughout the hotel.


And yet, just next door, was a classic brownstone where someone resided.  I loved the hotel being tucked into a neighborhood like this one.



So with the whole late afternoon stretching out before us that first day,  we were off after throwing our bags in our rooms.  It was drizzling outside, and yet the temps in the mid 40's felt warm.  I was so enamored with every little thing, I could have stopped and shot photo after photo, despite the fact we were on our way to find something to eat. 



But first we spent some time in Time Square, trying to take it all in.



And the something to eat?  Did not disappoint!   How about hand made gnocchi?  So yummy.  


To finish off the meal we shared a vanilla bean panna cotta for dessert.  



And then we were off again.  Headed out to find our next big adventure.



And suddenly around the corner, there it was!  The Gershwin theater, where we would see Wicked, that night! 

Jenna did such a great job getting our seats!



We couldn't take many photos, just a few before the musical started.  But when it did, I was completely entranced!  I could easily go see it, again, and again.  


But in true New York style?  Who would have guessed, the biggest adventure was still awaiting us just around the corner?

As we exited the building,  numerous taxi's were waiting, as well as a bunch of  bicycle pedi-cabs.  It was the young driver of one of these that won us over.  He felt he could get us back to the hotel in 10 minutes!  So why not?  We climbed in, and quickly figured out we'd better hang on!!  We had no earthly idea of the path he would forge- right through the middle of traffic!  He didn't pick a lane- he would zoom all the way to the left across ALL the lanes of traffic, and then as we shifted all of our weight trying to hang on- a car would start to move into our path, and next thing we knew- we were careening sharply back the other way.  His turns were wicked sharp, and left us clinging and lunging and squealing and laughing till our sides hurt!  We'd try to squeeze in our shoulders as we seemed to be in the direct path of taking out a mirror on a parked car, but he'd veer off sharply just when we thought we were toast!  

So TWENTY minutes later, he pulled in front of our hotel and took this photo of us.  I haven't laughed this hard in soooo long.  It was the perfect ending to our night.  And we had SO much more to look forward to.  I collapsed in bed, and happened to see that I had walked 9,999 steps that day- 1 step short of 10,000 (4 miles) which is a small miracle for me.  But then, who could have anticipated how much more would happen the very next day?  


Dr. Panwalkar met with me Tuesday, and brought Ravi, a 3rd year med student with him.  Dr. Panwalkar took his time in responding to my question about what treatment to try next?  He said he'd need to give it some thought, and mentioned one we've done before... but it was evident he needed to mull it over.  So in the meantime, I agreed to give the weekly taxol another try to see if I could tolerate it any better- and I'm still doing the Perjeta and Herceptin, along with it.  I have scans in a couple of weeks and will see Dr. Panwalkar right after Christmas.

So Dr. P walked us out of the exam room and then grabbed my arm before I turned, "I won't see you before, so Merry Christmas," he said.  It caught me off guard, and without saying a word I reached up just as he leaned over and hugged me, as I whispered, Merry Christmas to you, and yours, Dr. P."  And with that, he was gone.  It was the part of the appointment, I hope stays with Ravi, when he is someday seeing patients of his own. 

So I'm feeling pretty yucky, but hope that it will pass in a few days.  We have a big weekend of hockey, and I hope to make it to the boy's games.  

More New York photos soon...





Tuesday, December 8, 2015

Rockefeller Center and the tree


You can only imagine my sheer delight and pure wonder to see the header of my blog change to this very tree, last week.  The wonder of it all?  I didn't change the header myself. It wasn't my picture.  Nobody knew I was standing by that tree.  When Karen designed the beautiful header, she had no idea it was at the same time I was actually standing in Rockefeller Center next to the tree!  

Jenna, who is to the left, and Chery, who is to the right, in the photo, are the two amazing women who work for Sanford Health, and were my travel companions. I feel so lucky to have been asked to go along on this incredible trip. 

I have oodles of photos to share.  We saw so much- and we learned, we ate, we walked, and laughed and laughed some more, and ate again, and barely slept.  

But today, I'm plunging back into cancer world at Roger Maris.  I'll see Dr. Panwalkar, and then I am anticipating infusion.  I have a full night of hockey as well, as long as I feel well enough to go. 

But I'll be back soon with stories and photos and joy to share in good measure! 

Just wait until you hear about how we got to the tree! 



Wednesday, November 25, 2015

Thanksgiving and the laundry room floor...




It's 3 am-ish last Sunday morning, when I fumble towards the bed.  I've been in and out of the bathroom, gosh, how many times already?  I tumble in, burrowing down under the covers,  groggy with sleep meds.

Its the crashing sound outside our room that jolts me awake at 530 am.  What was that?  Rick, having driven 4 hours to the cities and then back again, is deeply asleep.

He stumbles out of bed, throwing on the overhead light and we see in the hallway, its Crosby.  He is in the midst of a seizure, drool pooling outside of his mouth, his legs thrashing.  His eyes are dazed, his paws clawing, and he is far away in another world, trying like crazy to get out.

I wish I could say its the first time.  But, it was last summer when the first glimmers of something wrong with him began to crop up.  Despite having chemo the day before, I had to take Crosby in to the Animal ER.

The doctor, upon entering the room, got right down along the wall, where Cros and I were sitting.  He simply starting cajoling Crosby, whispering to him, scratching his belly, and Crosby melted on the spot.  Fairly certain, I did too.

We ran all kinds of blood tests and ruled out all kinds of things.  But the big thing remaining?  Epilepsy- which essentially means seizure disorder, and its not uncommon in Golden Retrievers.

Plus this Veterinarian?  This God send of a doctor?  Looks at me, and looks at Crosby, and says- "he is so in tune with you.  He senses how sick you are.  And he can't keep it at bay, any more than you can."

Apparently, my dog is as surrendered as I am.

So we started him on Phenobarbital, last July.  Shortly after I started my 3 chemo cocktail.  And he slowly got better.




But this Saturday morning?  Was one of the worst seizures we've witnessed.  His dose of meds is clearly not within the therapeutic range for him any more, and we need to increase it.

The seconds stretch out before us as Crosby continues to writhe in front of us.  Then he loses control of both his bladder and his bowels, as we sit trying to soothe him, and yet steer clear of the mess.

Then suddenly?  His eyes clear, and he is back with us!!  And his tail thumps a time or two, and we start breathing in...  and instantly we're gagging, because its putrid and clearly we're mired in mess.  We spend the day cleaning, resting, and regrouping for the big week ahead.

 Because each day His mercies wash anew, and I start each day, with the gift of renewed hope.

I'm fine until early evening, Monday,  as we prepare to go to the parent hockey meeting for Nolan.  My stomach is churning and I'm downing more Immodium, hoping to settle it, in time.

But half way through the meeting, I'm feeling faint, lightheaded, and just downright sick.  And my stomach is now cramping.

I grab Rick's arm, and push him over to the sign-up sheets, scribbling our names down once, or twice, before I finally plead to go.

As I go to swing my leg up into the back seat of the car, my stomach doubles me over, and pain shoots through my abdomen.  I'm shocked by the intensity of it.

Tears spring to my eyes, as I rock back and forth.  Instantly we start talking about going to the ER.  I'm running scenarios through my head.  What could be causing this?

My stomach is distended and tender and I'm the one now writhing in the back seat, trying to bite my cheeks so Nolan can focus on driving.

No mother ever wants to see their young son, have to witness her in pain, let alone drive her to the ER.  He asks repeatedly if he should just take me to the ER, the concern and the worry flooding his voice.  But we're closer to home, and I know if I go to the ER, it'll be an all night affair, and I may not even get to go home.

So I ask for a reprieve in my own bed.  I swallow all kinds of pills, and tell them to let me rest, and if its not better soon, we'll go.  But really?  I'm finally able to just let the tears fall, because sometimes its all I have left to offer.

I eventually manage to fall deep into sleep and awake Tuesday to the cramping subsided.

But then the day and its meaning pops into my head and I'm sickened all over again.

It's chemo day... and how on earth am I going to do infusion... when I'm feeling too weak to crawl out of bed?

I think sometimes we know, before we know.

Tuesday was going to be a hard, and then an even harder day.

I was too sick for chemo.

My stomach was a tender, roiling mess, and it took the Nurse Practitioner two seconds to check, and  when I winced as she lightly touched my abdomen, she shook her head side to side, then hurried off to page Dr. Panwalkar.  "No Taxol."

I'll see him in two weeks... and lord only knows what, if anything is left for treatment.  Plus, I'm still waiting to hear about scheduling the scans we talked about doing.  So is all the stomach turmoil side effects?  Or is something new taking over my stomach, yet again?

And how is it when, you don't think you can sink any lower?  The hardest blow hasn't even landed yet.   With that,  I simply decide by the end of the day, I'm done on Tuesday.  With the tears, and the heavy, and the hard.

Late that night, its just me, kneeling on the laundry room floor, covered with shreds of whispered prayers and piles of mismatched socks.  I've left it with Him.

"Empty to fill, again."

 It's then, that I turn to Jesus Calling in search of words to balm my aching heart and soul...  and there it is... Sarah Young brings it home for me yet again...

November 24th-

"Thankfulness takes the sting out of adversity.  That is why I have instructed you to give Me thanks for everything... This is a spiritual act of obedience- blind obedience... it can seem irrational and even impossible to thank me for heartrending hardships.

"Thankfulness opens your heart to My presence and your mind to My thoughts.  You may still be in the same place... but it is as if a light has been switched on, enabling you to see from My perspective. It is this Light of My Presence that removes the sting of adversity."  

~Amen~








































Monday, November 16, 2015

when moments sustain...





I'm trying to learn this new landscape of weekly infusions.  I come away from infusion with a steroid induced thrum going through my body, heart and mind.  I fully use it to propel me into going out, seeing people, steeling myself for the tapering off of those adrenaline boosting drugs. I'm making up lost time, from all the months of seclusion this summer and sickness.   So I live those moments full because I can go from active- to flat on my back in sheer exhaustion, in mere seconds. 

And the rest I am coping with?  Is more nuisance and inconvenience.  It feels like I need handfuls of Imodium to loosen the tether I feel to the bathroom.  And the bloody noses.  The dry, cracked, bleeding nose.  The vaseline, the humidifier, the saline, the swabs, the kleenex.  Just another taxol side effect, more bothersome than worrisome.   

So I had every intention of being here, updating all that's transpired this past week or so... but it was Saturday night, when I crashed in a chilly heap on the bed.  Nolan had hockey tryout scrimmages we'd attended, and despite the fact it was Superman's birthday, he was coming down with a cold, and so we simply ordered pizza in, and crashed early that night.  

But in between the urgent rush to live full, and the crashing and burning that comes shortly after?  Are all the sustaining moments that bless beyond measure.  

Because it feels like the hard, is cushioned with His grace filled gifts, always. 


Like when my cousin, Pam, sends me the above card, in black and white- its one of those moments that sustains me.  The words, seep right into my heart and I'm nodding and smiling because they fit me so.  She sends the best cards, with offers of help when I need it, and words that speak to me, and I just need her to know it sustains me so. 

And then, at the same time, my friend, Connie, comes and brings me the cross from above.  It fits so perfectly in my hand, and I'm clinging and holding and hanging on again.  Thank you, Connie.  

Then the surprise from the Brantners.  They don't even know me!  But they bless us with a Bell State Bank Pay it Forward check, that is generous, and touches me, because they've never laid eyes on me. But they humble me so, and honor me in a way that is hard to attach the right words to.  But I'll start with these... Thank you, Laine and Tiffani.  We went to the Moorhead bank branch and deposited it in my old "benefit," account.  Every time, its close to being depleted, something shows up.  I feel like He shows up.  And we bank our gifts, knowing when the new deductible hits in January?  We'll have help.  Blessed help.  

How about that collage picture on the bottom?


It was weeks ago when the call first came.  I was sitting in the PT waiting room, surrounded by patients, waiting my turn for the Lymphedema therapist to see me. 

I answered the phone in a hushed voice, and heard a hushed voice in return.

"Hi Vicky, this is Chery.  (Chery is a Psychologist that facilitates our stage iv group.) We were wondering if there is any chance you might want to go to New York City?  My mind hits pause, because did she really say, New York?  Me, go to, New York?  

"We have a Breast Cancer Conference, sponsored by the Avon Foundation, and were wondering if you'd like to attend with us?  I'll go, and one other, plus you."

But most of this is somewhat lost on me, as its noisy in the waiting room, and I can barely hear, but I know I heard New York, and I'm saying Yes! 

And suddenly, its only a couple of weeks away, December 1st, and I'll be leaving for New York City! We booked our airline tickets, and reserved hotel rooms, and the excitement of going keeps drawing me forward, sustaining me.  The Avon Foundation granted us money to help run our support groups, and my mission?  To help garner more funds!  

And I have a special friend, Barb, with both enthusiasm and wonderful taste for fashion and style.  She generously brought the "New York City," bag from TJ Max and filled it with things I could wear!    She clipped ideas in pictures(above) and ran them past me, and then proceeded to get me all the right sizes, and mix and match colors and truly just gave me the confidence to feel like I'll look fine when I go. 

Could the sparkling cider have arrived at any better time?  Linda made sure to include it in a box with  a pretty sweater, cute hats, and a scarf and the beautiful Rumi card.  Its a Colton favorite and he can't wait to open it and enjoy. 


As small as I feel sometimes, vulnerable, and stripped bare.   How is it that my life feels so big?  Far bigger in ways I could have ever dreamt it could be.  

Its Ann Voskamp that sings it home for me: 



“Humbly let go. Let go of trying to do, let go of trying to control, let go of my own way, let go of my own fears. Let God blow His wind, His trials, oxygen for joy's fire. Leave the hand open and be. Be at peace. Bend the knee and be small and let God give what God chooses to give because He only gives love and whisper a surprised thanks."

I'll humbly be whispering my thanks tomorrow as I go in for lab work, then doctor's appointment, then infusion for Taxol, Perjeta, and Herceptin.  It's a long and full day... but this much I know is true...


~All shall be well~


Can I pray for you?

Please leave requests in the comments below if you are so inclined.  












Tuesday, November 10, 2015

rollercoaster

It’s right when they pull the bar down over my head and wedge it into my lap on the rollercoaster that I start to inwardly scream, “Wait! I changed my mind! Let me off!” 

Who picks Space Mountain, at Disneyland, to be their very first rollercoaster experience?  

By now, however, it’s too late.

With a jerk the car moves forward, as the undercarriage starts grabbing the hooks, to lift it towards the sky.

By the time we are climbing, the car is clicking- each "click, click, click" ratchets my anxiety up a notch and I am sure this was a mistake. I press my knees against the back of the seat in front of me trying to hold myself steady.

I steel myself, surmising the drop will come, whether I like it or not.

And then there is that moment, that nauseating and violent moment where everything slows down... 

For a brief portion of a second I’m airborne, held in by that suffocating bar. 

Then down we go and I shriek as I hurl back into the seat!  I tell myself "it's over soon, over soon... over... I just need to ride it out.   It will end... 

Whew, it does.  I'm shaky-kneed and breathless as I walk away...

Its not until my boys ride their first "intermediate," rollercoaster at Hershey Park, that I get back on... this one in the light, and I'm more focused on how my boys will do, than myself.

These days I find myself, on a rollercoaster ride... like none other.  One that doesn’t end.  I'm flying around corners, hurtling up steep embankments, waiting... feeling my stomach lurch... knowing the plunge and the free fall will happen... again, and again... whether I'm ready or not.  






Weekly taxol infusion today...


Are you following Rory and Joey's story?  Heart wrenching and life-giving all at the same time.

THIS post, had me saying, me too!

Pretty sure love made my hair fall off, too.  

It's love after all, that beats cancer, every time.

Next blog post later this week- filled with all kinds of love that is seeing me through- plus my next big adventure...










Friday, October 30, 2015

walking the bridge


Our Aunt Cathie posted this on my fb page and I loved it so.  Many days I feel as though I have solid ground beneath my feet.  But then the wind gusts, and I sway, and the air clouds in fogginess and I can't see whats up ahead of me.  So the only thing I can do is keep moving forward, praying all the hope laid at my feet creates the bridge that sways along with me, leading me to all of my tomorrows. 


We're still trying to put our feet squarely on the ground after our trip.  We loved hearing from so many who celebrated the sheer delight and surprise of the trip, right along with us.  

Imagine my great surprise and complete honor to have this photo texted to me a couple of days after we arrived home.  


"It's Hockey Fights Cancer Night and the Cullen family fights for Vicky Westra!"



I loved watching all kinds of new people showing up to like the  Cullen Children's Foundation FB page!  


Tuesday, it was my turn to dive back into cancer world.  Dr. Panwalkar was away from the hospital for a couple of weeks, and so I had the pleasure of seeing Erin, a PA who works with him.  I have been feeling well, and had an element of dread sitting with me, when I thought about having to do Taxotere again.  But Dr. Panwalkar hadn't fully decided on whether or not I should go back to Taxotere, or start a different drug, called Taxol.

Since Dr. Panwalkar was coming back, on Wednesday, the day of my infusion, Erin left him a note, so he could decide.


In the meantime, I had my port accessed and then blood work drawn.  I went home with the needle left in my port, so that it was ready for infusion the next day.  Its not very comfortable, but neither is trying to have the lab techs poke me 5 different times to access my tiny, rolling, veins.  





So the next day I arrived, wondering what lay in wait for me.

And it turns out, it was freshly written orders from Dr. Panwalkar, for Taxol.  Its eye-opening to me, that sometimes the smallest change, can set off the biggest chain of reactions.  Oh my, I was not prepared for what was to come. 





First I had to sign consent for treatment again.  The language used in the form is filled with words I simply don't want to embrace... and yet, its the only way for me to move forward.  I feel the bridge sway, as I sign my name and date it.  

But then my friend, Karla shows up to sit with me.  And she helps me stay in this moment, and that is always pure gift.  And when she has to go?  My friend Barb comes and rains grace over me through her loving ways.  She's been an angel to our family and having her here with me, steels my resolve.  

Its almost time for me to start my new drug.  And what should appear around the corner of the curtain?  A hand, waving, capturing my attention... and then the white sleeve, and then the big smile- and there is Dr. Panwalkar, exclaiming "And how was the jet?" (referring to our trip he must have heard about.)

He looks so refreshed, and is in a jovial mood.  He sits in the chair next to me, and says he has come to talk about the Taxol with me.  He really likes this drug, the drawback is that you take it weekly.  But if you tolerate it,  its a good drug.  I'm a little spacey from all the Benadryl I've had along with the steroids.  I feel like I'm a jittery mess, with a layer of grogginess on top.  

As Dr. Panwalkar finishes talking, and gets up to go, he leans over and squeezes me, with a big smile telling me how nice it is to see me with all the puffiness gone from my face.  But this won't be the last time I see him, today.  

My nurse has brought me side effect information on Taxol.  Its the one little part about a possible hypersensitivity reaction, that causes the dread to rise within me again.  It happens within the first 10 minutes of the infusion, typically, if its going to happen.  And it involves, hives, rash, swelling, difficulty breathing, etc., all that comes with an allergic reaction.

But my nurse assures me she will watch carefully, and have all the meds ready she needs to administer should anything happen to me.

So, onward we go.  She hooks up the bag, and slowly it starts to drip.  Rick comes back and sits with me, and we sit quietly, while the minutes trot past us steadily.  Soon we're past the 10 minute mark and all is well.

It isn't until we get near the 50 minute mark, that the first tingle comes to my lips.  I find myself smacking them, as they tingle in a numbing sort of way.  Its then that my nurse happens to be coming into the room, and I tell her right away, "my lips just started tingling."

And then everything speeds up, in a slow motion kind of way.  She quickly gathers her meds, and pages for the nurse practitioner to come.  The drip is stopped.  I'm quickly given a dose of Benadryl, as they listen to my breathing.  Nurses come from all directions. "No hoarseness noted in her voice."  I acknowledge that my throat is fine, my tongue tingles on the end, but doesn't feel thick.  But my lips just tingle away.

Moments later, I look to see Dr. Panwalkar hurrying around the corner, stopping short of the large group now gathered around me. Our eyes meet and he mouths to me, "Is this you?" as he points to his pager and then at me.

I nod my head up and down.  The fogginess invades as the Benadryl takes effect.  He then orders more steroids and my nurse quickly draws them and injects them into my line.  

Everyone stands and watches for awhile.

Dr. P wants me to wait until the tingling goes completely away, and then he'll consider having me re-start the last of the dose in the bag.  

Its getting late now, I'm one of the few patients left in the infusion center.  As we sit and wait, most everyone is done with their shift and many leave.  It finally seems that my heart rate is back to normal and my lips no longer tingle.  So we start the drip again.

And somehow, by the sheer grace of God, I finish the last of the Taxol with no more adverse effects.  Its 530 pm and I have been discharged to go home.


I only manage a few hours of sleep, as the steroids have their way with my ability to sleep.  But no matter.  As I crawl out of bed and witness the beauty of a brand new day, while the sturdiness of the ground guides my feet once again, hope washes anew. 


















When you get lucky

When you get lucky

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