Friday, April 29, 2016

keen eye







It was Dr. Panwalkar that summarized what the last 6 weeks have felt like, "Wow, " he said on Tuesday, "you've really been through it this past month!"  As the days blurred into weeks and now months have gone by, it does feel like a lot when you go back and add it all up.

Yet the irony that always remains, is that Dr. P suggested going back to a higher dose of Perjeta, because I seem to be recovering from the c-diff.  But he did tell me it was my decision, and he'd go along with whatever I felt.

So I put my faith in him and ultimately, I know its with Him, and said yes lets do the higher dose.

You see, I've been whispering the same word, prayerfully, over and over again... strength.  Help me find strength.  Please, help me find strength.

While I've come to know the prayers are answered, what has been such a revelation to me, is that often they don't come the way I think they will.  

Awhile back, we were given the gift of hockey tickets to go and watch the University of North Dakota play their last home game of the season.  

I didn't know I was already coming down with C-diff, having just finished antibiotics for strep throat. Usually, travel and anything related to hockey gives me such a lift.  

But despite the great game day atmosphere, the awesome play of the Sioux, and the big win that night- I couldn't ever get past feeling sick and uncomfortable.

I squirmed in my seat.  I tried to sip a sprite.  I rejected food. I just felt miserable.  

I was relieved when it was time to go.  

We fell in line with each other, realizing we needed to head in the opposite direction, against the crowds streaming out.  So we watched for an opening, and suddenly I saw her.

A few yards down from us, the crowd seemed to diverge around something, then come back together in front of us.  

A woman was shuffling her feet, her arms looped over a walker, and her head bent so far forward, you could only see the top of her head.  Watching the effort it took her to pick each foot up, and get it to align in such a way to carry her weight forward, was something to behold.

And she looked to be, completely alone.  

How could she see where to go?  Her head didn't come up, not once.  People streamed in and around her in a steady flow, as she slowly steered herself forward.  Oh the trust and faith she must have, that she would be okay somehow.  

I could only stand and watch.  What could I do to help her?  I would startle her to even try and say something to her.  Plus I was jarred in between Nolan and Rick, truly nowhere to go.  When she finally passed us, she left a gap behind her that the rest of our family could squeeze through to the other side of the hall.  

What just happened?

We all walked quickly to the truck, but my thoughts still followed her.  How would she get home?  How would she fold her walker up?  How would she steady herself to get in a vehicle?  How could she even zip her coat, or put on a hat or scarf?  How?  

As we sat shivering in the truck, waiting for it to warm up a bit, I finally couldn't keep my thoughts quiet any longer.  

Had anyone else seen the woman with the walker?  The one who seemed all alone?

Its Nolan who speaks up.  "You mean the one bent over?   She wasn't alone, her husband was up ahead of her.  I saw he had keys in his hands, I wondered if he was going to get the car?  She looked like it hurt to walk.  I couldn't even believe she'd be at the game."

I'm stunned.  My hockey obsessed son, just mirrored my very thoughts back to me.  There sure were a lot of hockey things we could have all been focusing on. But the way we see things, has clearly been transformed.  Our eyes more keenly aware, of those on margins, much like ourselves.

Its Rick who speaks up next.  He turns and smiles at me, before he says over his shoulder to the boys, "she was probably there cheering on a grandson, not letting anything get in the way of doing something she loves.  Pretty amazing, how dedicated we can be to what we love despite the toll it takes on us."  

The image of her circles my brain on the way home.  When I prayed for strength?  I had hoped somehow it'd be given to me.  That I'd feel bolstered, reenergized, or renewed somehow.  What I didn't fathom, is that the epitome of "strength" would parade before my very eyes.  My keen eyes that now see- that if she has the strength to do THAT, than surely, I have the strength to do THIS. 


I've started so many blog posts- but not had the capacity to sit and finish them.  So here are a few tidbits from the past couple of weeks.


My completed art project - my photo transferred onto this beautiful piece of wood.


Along with a fantastic meal, a sweet friend gathered goodies in a bucket and this one I've turned to time and again.  



So many gray, gloomy, drizzly days in a row lately. But these keen eyes?  Help me see the extraordinary in the ordinary precisely when I need to see it most.



What do your eyes see more keenly these days?



Monday, April 11, 2016

a year ago









It was a year ago this past week, that my dear mom, Mary Ann, went to Heaven.  But even as I feel physically, more like Snoopy up there in that photo, emotionally, I have felt peace.

My word, choose, was what I decided to use as my guide this past week.  I just wanted to be open, to feel what may come- grief, loss, sadness, and sit with it, then "choose," to let it all go.  Empty, to fill, with joy, with love, and peace.

I'm still in the throes of c-diff.  But Flagyl seems to slowly be knocking it back.  I still have a few days left of antibiotics, and will hopefully be able to rid myself of the bacteria completely. Food is a challenge, and energy elusive, but He sprinkles grace in all the ways that nourish me, despite what it may seem.

My friends put together a sign-up genius meal plan, and it's already close to full!  The very week, I can use a big dose of "motherly" love, is when comfort food starts streaming through my door.  My words to express the depth of what I feel, elude me, but my thanks-giving transforms into thanks-living, and I'm still numbering my gifts into the thousands, literally.  The food, the love, the ahhhs of my boys with stomach's full and in spite of what I lack to mother them, they are filled and then, so am I.  

It was infusion time, last week.  I was expecting I'd have chemo on Tuesday. Despite how I feel, I still need to keep cancer at bay.  Yet, as my stomach churned,  and I was running to the bathroom all morning, I was wondering how I would do this? 

Its my nurse, on Monday, and her gentle touch, and soothing tone, that begins the sprinkling of grace. She inserts the needle for blood work, as she tapes and smooths the ragged edges, and re-tapes the tubing, her eyes brimming with light and encouragement. Her hug wraps 'round me as she says goodbye, she sets the gentle tone for the week. She "mother's me," in a way, and I feel my own mother near.  I leave, more confident I am prepared for chemo the next day.

It's Erin, the PA I see, Tuesday. So many have reached out through email to me, asking about the latest news from Dr. P,  whose calendar is simply full.  I'm fighting against feeling like such a burden as a patient, in a system that is both first rate, and at full capacity at the same time.    

We breeze through the appointment that day, all things seem stable, and chemo is a go.  I'm quickly settled into my infusion room, and then Marissa, the artist, comes.  
I've always said if you choose, so often what you choose, comes to you. So this day, I'm choosing joy, instead of sadness and grief.

Marissa shows me my new project we had started.  (I'll show pictures when its done.)  But the process, of transferring this sunset photo onto a piece of wood, is soul soothing.  




And as we work, in and out, nurses, and providers, and smiles and energy flow past my door- as joy seeps into my heart, bathing it in a warm glow.  

~all shall be well~


Slowly, I'm more out of bed, than in bed.  Food starts to have taste again, and is more tolerated by my stomach.   

I'm greeted by these postcards, from my book club friends, who wrote to me from their last meeting place.  Thanks girls! 


I spent an entire day last week, reading through my old blog posts about my mom's last years of life.  And then I stumbled across this gem...


If ever anything surmised the true sass and wit of my mother, her the Lucy, me the Ethel- capturing the hilarity of that day and living it again, fills me so.  I can only imagine the shenanigans that began the day my mother entered her heavenly home.   




















Wednesday, March 30, 2016

Where I've been



Its 2 am and the security guard is planted outside of my room, near the door of the room next to mine. The shrieking is coming from the room next door, and I'm instantly brought back to my days working psych. 

Since the hospital is full, as in no beds available anywhere, room 7 of the emergency room is my "hospital" room as long as I need it.  

Superman flew me in about 7 that evening.  Thankfully, with patients lining the corridor, the walls, the chairs all filled, I am ushered into a locked "family" waiting room which is empty.  With the likelihood that I have little to no immune system, Sanford now allows chemo patients to wait separately from the rest of the contagious patients. I think its brilliant that they have devised this plan and I am so very grateful.

While Rick watches a streamed show on his phone, I curl up in the corner, trying to rest my distended and cramping stomach.  The bouts of diarrhea have increased, and I suddenly started vomiting Easter evening.  I can't keep anything down, and its fluids that I seek.  

While dropping the Taxol from my chemo regimen, we also increased my dose of the Perjeta and I think I am having increased side effects because of this.

Its two hours later that we are ushered back into room 7.  While my port is accessed, and labs drawn, I'm soon hooked up to iv fluids.

My ER doctor makes a hasty entry, apologizing for the long wait.  He wants to x-ray my sore and swollen stomach, check my urine, and wait for the blood work.  

With the sheer amount of patients to be seen, we settle in for a long night.

While we check off test after test, with nothing obvious making itself known, we think I'll be released soon, having been given 2 bags of fluids.

But then that one last test pops up in the doctor's orders- stool sample.  

At least this will be an "easy" sample to provide- and I shake my head at how I now find this quite humorous. 

Even though I've just had my stools checked 3 weeks ago and they were fine, it can't hurt to check this off the list too.

An hour later,  Dr. G comes striding back into my room.  But this time he crouches down next to my bed.  "I'm really sorry to tell you, you've tested positive for Clostridium difficile- or more commonly referred to as C-diff. 

He warns me that it can literally infect my colon to the extent they would have to surgically remove it or people go septic, and can die from it.  But he also assures me that even though he'll be gone, if I get worse in any way, to come right in and his colleagues will take care of me.

(Plus, I know I have Dr. P.) 

We'll start with a 14 day supply of Flagyl, known for leaving a metallic taste in you mouth. But there are two more drugs to try as second and third line treatments.  And I also know of one other treatment, that I'll keep to myself- because, ewww... and thats all I'll say for now.

With that, the doctor bids me well, and hastily jaunts off again.

Its nearly dawn, and Rick and I wheel past an almost empty waiting room.  Security is present again, working with what appears to be an inebriated woman, clearly needing some assistance.  

A smile plays at the corners of my mouth, again, as I step into the chilly early morning air.

I lost most of yesterday to sleep.

This morning, I turn to my Jesus Calling,  knowing it'll somehow speak to my weary soul... 

"I am taking care of you.  Trust Me at all times.  Trust Me in all circumstances.  Trust Me with all your heart.  When you are weary and everything seems to be going wrong, you can still utter these four words:  I trust You, Jesus."  By doing so, you release matters into My control, and you fall back into the security of My everlasting arms."  

Amen!



 My house has been filled with such an abundance of gifts and messages - they delight and fill me so. I've wanted to share them for so long- here are just a few.  Thank you to all of you who continue to flood my mail box, my doorstep, my email - and offer encouragement everywhere I turn.  

With deep gratitude- thank you! 






-







  







Wednesday, March 16, 2016

5 years



It started with the shivering.   Last Monday, shortly after I'd gone in for my port draw for lab work, I came home and couldn't wrap myself in enough blankets to warm up.  I had so much to blog!

But I crawled into bed and threw big blankets on me, instead.  I slept until noon.  And awoke, just as cold.  I finally found the thermometer.  101.  I crawled back in bed, shivering, trying to warm myself.  An hour later, my fever was at 102.  Time to call the doctor's office.

Dr. Panwalkar's nurse is always so helpful.  The concern registers in her voice and she assures me she'll track down Dr. P right away.  She calls me back as my temperature rises to 103. But other than general malaise, and the discomfort of fever and chills?  I have no symptoms.  So we agree I'll get the fever down with tylenol and if it stays down, I have an appointment the next morning with the PA, Annie.

Annie, has already introduced herself to me earlier in the year, having read my blog and recognizing me in the waiting room.  We quickly discovered we have a love of Golden Retrievers and we've both named ours after Pro hockey players.

It's the next morning that Annie sees the white spots on my now scratchy and sore throat and feels the swollen lymph nodes around my neck.  We conclude its likely strep, and either way I'll be given two antibiotics to fight infection.  And no chemo for the day.  Annie even calls me the next day, just to check on me, and I'm so touched by her follow through, and her compassion.

Last week became a blur of sleep, fatigue, and general yuckiness.  The antibiotics are doing their job with the infection, but my body doesn't take kindly to them either.

Through long days of bed rest and quiet, I find that my reflective voice and so many of my prayers center on the same theme... strength.  Both physical, and mental strength too.  Weekly chemo is taking its toll.  I barely start to feel well, when its time to begin the whole process again.

I'm foggy, groggy and the grey and gloomy loom overhead, with hints of light streaming through, but they're too elusive to pin down and make them stay for awhile.

So I see Dr. Panwalkar yesterday.  I've been preparing to have my 3 drug cocktail after I visit with him.  We volley our questions back and forth.  I see he is contemplative.  And even though I have chronic diarrhea, and fatigue gnawing at me, he feels we should continue on with treatment.

I'm fine with this, as long as he'll give me a date in the future when I can have my next break.  And then I say the words that change everything, "because mentally, I am struggling with weekly chemo."

And without hesitation, he simply says, "Well then, why don't we stop the taxol?"  We'll just continue on with the two other drugs, once every three weeks."

"Really?  I say.  You think that would be okay?"  "Yes," he says with assurance and confidence, and a big smile on his face.

Relief starts to flood over me instantly...

And then I bring up the piece I've been clinging to, for so long now.

"Dr. Panwalkar, tomorrow, is 5 years from the day of diagnosis for me."

He turns and breaks into a really big smile, now.  "5 years?"  And as it registers shaking his head, he says it again, "5 years..."  And we don't need to say anything, because those two words say a lot already.

As he finishes up typing orders he also mentions he wants to check into an antibody study for me since I'm NED and we can discuss it more my next visit with him in 3 weeks.  I'm beyond excited to hear what he may come up with!  






So I ask for a photo with him, as I prepare to leave.  




Later I come back for infusion.  I'm grateful they squeezed me in.

I'm taken to my room, and then Joyal comes in to say she'll be my nurse.  As she heads off to gather supplies to get started, I'm surprised tears spring to my eyes.

Joyal (with the beautiful name) hasn't been my nurse for a really long time.  She is the one who grew up in my Dad's hometown.  Its such a small town in North Dakota, with the famous big cow on the hill that you can see from the highway.

And my teary eyes?  Because without knowing it, Joyal brings my Dad to me.  He died, just 8 months before I was diagnosed.  Oh the memories of my cousins, and the farm, and trips to see Grandma, and the fun we had.  And somehow, I feel Dad there with me, in that infusion room.  And all of those prayers for strength?  Somehow, I feel HIM there with me, too.  


Plus all of you.  You've sent me cards- with meaningful words, or beautifully colored, and some hand made.  And plates of food, and bags of doughnuts from Grace church, and visits from friends.  I managed a full morning of writing belated thank you's and I delight in that so.  More to come- soon friends.  Soon.













Friday, March 4, 2016

choosing


Two weeks ago, Marissa, who comes into the infusion center with the coolest art cart, and great projects to do, asked if I wanted to learn to knit- with my arms.  

How will I learn to do this?  My addled and fuzzy brain couldn't possibly learn the steps.  How?  

But that word hovers around me now, and I hear it on the fringe of my mind... "choose." 

So instead of investing any time or energy in thinking I can't.  I choose yes.  I'll try.  I'll just see.

What I didn't know, was that really?  I was choosing Marissa.  Without her gift of patience, and ability not to grow frustrated despite the 364 times she has to show me again, she saw me through.  She'd untangle here, and guide me there, and then my long infusion that day- went by really fast.  But I hadn't finished.  




So she came back!  She remembered, somehow, to come find me Tuesday for infusion, and we finished!  And then she gifts me with the beautiful blue and lavender scarf she worked on herself.  I see them hanging on the hooks by the doorway at home now.  And I simply smile, because its such a great reminder, to lean in sometimes, despite the uncertainty and the questions, the self-doubt- and choose anyway.  



Look what another beautiful woman chose to do for her 65th birthday.  Inside was a gift card to Target.  The woman simply beamed, handing out envelopes to each room she was invited into.  A simple gesture, a kind word, and she left.  The box she carried, was FULL of envelopes and cards.  She even brought a cake- for the staff to enjoy.  


After spending a warm and sunny Saturday, walking a mile and 1/2,  and getting a pedi with a friend, we decided to end the evening with dinner at a nearby Chinese restaurant.  All 4 of us together, eating out, for the first time in a long time.



It was 2 am when I awoke to the first sign of needing to run to the bathroom quick.  Then 3 am, and then 330, and then... oh... and then it was just easier to camp out on the floor of the bathroom.  

The next morning didn't start off any better.  I took all 8 doses of Imodium, but nothing slowed down.

I put a call into Dr. Panwalkar first thing Monday morning.  Within a couple of hours I was given a room at the hospital on University.  I needed fluids and monitoring.  When the first liter emptied into me through my port, and my bladder still wasn't full, we realized just how dehydrated I had been.



It was later that night I was released and able to go home.


I was back into enough balance to do chemo the next day.

The irony for now is all the fluid I have again accumulated in my right arm, hand, and fingers in the form of lymphedema.  Its swollen and taut, and uncomfortable, and so I wrap and compress and try to release the fluids from my damaged tissues.  

Its a vicious circle, and yet, it keeps me here.  

Choosing.

This weekend, while Jim stays with Crosby, the rest of us are going to the Cities to watch the Minnesota High School State Hockey Tournament.  

It won't be easy on me in some ways.  But it also lifts me in so many others.  I'm choosing gratitude, resting in Him, knowing He has this, no matter what it looks like.

How about you?  What are you choosing today? 








Wednesday, February 24, 2016

Our Moorhead boys...

I often wonder what my boys will think about their childhood having grown up with cancer in the midst of their lives?  I continuously try to "pour" into them, as much of myself as I can.  These words below resonated deeply with me when I first read them...


It was in the middle of chemo last week that I had a revelation.  Nolan had told us that he would be starting in the quarter final section game against Buffalo that night, last Tuesday.  He would be skating on a line with Matt Herbranson, and Jack Stetz, who just so happened to have moms who also had survived breast cancer!  Nolan would be centering the line with Jack on the right, and Matt on the left.  I texted my friends, and asked if we could do a picture together.

Here we are- Sue Stetz in the middle and Steph Herbranson on the far right.  We were so proud of our boys!  We posted the photo on Facebook and were overwhelmed by the response it got.  



Imagine our bigger surprise, when our boys came home, asking permission to be interviewed by Chris Murphy from the Fargo Forum.  

The story ran in today's paper.  Here is the link: 

With mothers having battled breast cancer, three Moorhead hockey players have special bond


I'm so honored to read this story.  The three of us.  The three of them.  Bonded together by the hard, but also the grace, and the perseverance to move forward- together- surrounded by a loving community that walks along with us.  

Our boys?  Got it just right... and I'm deeply humbled that they articulated their thoughts so well. 

The Moorhead Spuds hockey team will play in their section final tonight against Bemidji up in Thief River Falls! Go spuds!  Onward Moorhead! 

Will you help cheer us on?  




Tuesday, February 9, 2016

What do you say?

How do we ever know what to say to someone who has just had the rug ripped out from beneath them?  Especially when their "hard thing," may be so vastly different from your own experience?  If we can't fix it, and can't take it away, what do we say to them? 

"Some things in life cannot be fixed. They can only be carried."  Megan Devine 

“It’s too much to bear – may I sit with you and bear it with you?”Marilyn Gardner


I've given my highlighter a work out.  I've been reading, and storing up these bits and phrases that speak to me. They're real, and speak authentically to me.


My gratitude swells every time someone steps forward to "bear it," with me.  My friends organized a meal train- and within a short time- its full!  With my own limited ability to eat much on some days, I love knowing my boys get a full belly of a really good meal, several times a week. 


Truth be told, indefinite weekly chemo is not something I think I'll grow accustomed to.  A few days after infusion, as I start to regain some energy again as the drugs leave my system, my counts fall.  Then back down I go.  I've yielded to our bed more than I'd like to say.


But in between?  Friends just stop by, bringing cookies they've just baked, or banana bread. One sweet friend, brings me a scarf with hearts, to brighten my day, and make up (that I happen to love!) and a new shampoo system that helps you grow hair!  And she sits, and listens, and nods, and gets it perfectly right.  And that warmth that she instills, carries with me, as I crawl back into bed later. 







And this one?  He yields with me.  His knowing eyes, that SEE me, as he endures the side effects of his own medications trying to squelch the epileptic seizures that wreak havoc on all of us.  They're traumatizing for us to watch him go through, but we've made it through every one of them. We gather around him, cajoling him, whispering his name, and thanking God when he suddenly comes back to us, panting, but weakly wagging his tail, telling us he's back.  We bear it with him, as much as he does with us.






Because through the thick of it all, the bright moments are still shining through.  Like when Colton comes home and quietly lays this certificate on the kitchen table.  The table is a mess, filled with blank thank you notes I plan to write, and lists of people to write to, and items we need to replace- the mess of our life on clear display. 

But through it all- the light shines bright and seems to always highlight the things that matter most. The ones that see you through.  Because it tells me he, my baby,  is doing okay- despite how not ok it all feels at times.

(He won't pose for a picture with it, but he beamed when I noticed it, and that I'll carry with me always.)


And yet, we're stepping forward, no matter how much the chaos swirls round.  With the help of members from our hockey community and Rick's Dad, Jim, we've found help to lay our floor.  We're using the maple flooring, pulled from Rick's Grandpa's and Grandma's farmhouse.  The 120-some-year-old house is gone now, but the beautiful reclaimed wood bears the prairie dirt, the dust of harvested crops, the footprints of all the ancestors to have gone before us.  It's breathing new life, while building a storied and sturdy foundation to carry us all forward.


This boy, our Nolan, won't pose for pics either.  But he gives me this most treasured moment.  Its a long story, years in the making.  About a boy, and a Spud puck given to him by the head coach at that time, and how he at 3 years old, tucked it in bed with him, and dreamed big dreams of where that puck love could take him.

And this mom?  Held fast to those dreams of his too.  Yet, I don't long for the grandiose, the big, the bucket list worthy type of things.  I long for the small, the little, the milestones my boys will encounter and the ability to bear witness to as many of those as I can.  

Like this... his first...




Varsity goal.  


And as if everything conspired to align that night... the tv sports cameraman, caught it all on tape... and it aired on the news that night.  Number 27, (our Nolan) with help from a seasoned number 22 who so beautifully executed the pass, shot and scored his first "Spud goal," a few weeks ago.

And I cried, tears of joy, and celebration, of yet another milestone I got to bear witness to.  


untitled from Vicky Westra on Vimeo.

And that moment when it all comes full circle.

When that "little" boy, becomes a young man, and pays it forward.

Yesterday, that same boy, (Far right in the back) went with the team, and surrounded these "mini-spuds," in hopes that they too will dream those big Spud dreams.





Rick left for Idaho for a week, I have infusion today.  

Ob la di, Ob la da, life goes on...


When you get lucky

When you get lucky

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