Thursday, August 24, 2017

snapshot of my days

I felt like I was in trouble, physically, from the moment I awoke Tuesday morning.  That sense can loom over us before we completely understand it-  is it fear?  Uncertainty?  Just what are we feeling? Why?

I rolled out of bed convinced I'd muster the strength to get through the day.  I had labs, then a visit with Dr. P, then off to infusion, and an afternoon visit with our Fourward group.  Whew.  That is a full day.

But everything was wonky from the start.  I simply couldn't breathe.  A step here, and maybe another and I had to sit or everything felt like it was slipping away from me.  I was so short of breath, and lightheaded at the same time.  Bathing, dressing and getting ready were a tall order.

So we were running late- I simply had no control over what my body could do.  I apologized from the start of arriving at Roger Maris, and the wheelchair was not even questioned but rolled out to me instantly.  

Roger Maris was very accommodating and forgiving of me running behind.  I was soon taken back for labs and then taken to Dr. Panwalkar.  But the lab was behind too.  So when Dr. P walked in the exam room door, he got right down to business.

"A wheelchair?  Why a chair?   Oh what is going on with you?"  he loudly proclaimed.

He sat and faced me right away.

So I told him.  How late I had been, and how physically I wasn't feeling well.  My breathing, my ability to walk and stand and do anything, truly diminished.  I hadn't left the house in 3 weeks.  

Where were those labs?  It had been enough time, but they still weren't back.

Dr. P performed his thorough exam of me like always.  Surprisingly my lungs sounded clear and good.  I really didn't show many symptoms that explained how I was feeling.  The photo of me above, shows how well I can look, even when things on the inside don't match the outside.

What would tell us the most, were my lab results.   The labs just hadn't come through.  Dr P needed to move on with his day.  

So Rick maneuvered me out the door and I heard Dr. Panwalkar say, "Oh, I can get her."  The next thing I knew, I looked behind and sure enough, Dr. Panwalkar was pushing my wheelchair!  In case my adoration of him wasn't as high as it could possibly be, he shows another level of compassion for me.  You could say,  the picture of me in the wheelchair to him, didn't match my words either, but he went with his heart and treated me like I said I needed.  He even took the time to move chairs and steer me perfectly into a waiting room spot to sit and wait.  My heart was bursting for all the right reasons.

Soon, my infusion nurse, Casey, took right over with the deep level of care and concern as we continued to wait for the labs.  It was my doctor's nurse, Angela, that brought the final word to me.

The labs were back and my hemoglobin had fallen to a 5.8!  That is low- extremely low.  And it completely validated why I felt so lousy! She relayed to me how Dr. Panwalkar looked relieved too.  The way I felt and everything I had said matched the results in the blood work.     I needed fresh blood- ASAP.  They could get me in upstairs, in two hours.  I needed to come back in a week to do labs all over again, and see if then I could do chemo.  Angela completely understood the range of emotions we were all going through, and went out of her way to help me maneuver it all too.  I don't feel like I can ever thank her enough for all she does for me.  

Then Angela saved the best for last- a kernel of the best news possible was buried in the mix of some not so great news.  My tumor marker?  Had dropped- from 52, all the way down to 40!  The chemo is working! We just need to get my body up to a quality that it can take another dose of the chemo.  

The rest of my afternoon, was spent lying in a bed up on the old family birth center floor.  I watched tv, rested, and relaxed as the drops of blood started to restore me.  Its a feeling of the light coming back on, after the darkness has swallowed you up for far too long.  I could breathe.  I could walk about. Everything became so easy peasy again- as it should be.  Even when Nolan came to take me home from the hospital, he pushed the wheelchair ever so gently, guiding me down to the car.  But I felt like I could have walked on my own.  

A wonderful dinner awaited me at home.  I did happen to gain 3 pounds and it was all due to the wonderful meals and treats we've received.  I've enjoyed the food so much and it truly made a difference in my life!  Thank you to all who have done so many things to encourage and uplift my whole family so much.

I still have a lot of recovery to achieve.  My counts need to all go higher before I will be able to do chemo and get all knocked back down again.  Most of my time is still spent sitting, or lying down, between my chair and my bed.  So I'm doing all I can to just stay in today and make this day count.

One of the things I've managed to make progress on, with the help of a wonderful friend, is turning this blog, into a book!  Without her guidance, her talents, and the her gift of time, this project may never have taken flight.  She's managed to wield a kitchen chair, wedged between my bed and a recliner for me, and the weight of many posts from my blog- woven together with her deft hands.  She's seen me at my lowest, and always helped me to give my best despite everything.  

We're not quite finished, but we see the completed project on the horizon.  

Love to you all! 

Friday, August 11, 2017

life in my days

I arrived at Roger Maris, on Tuesday, the first day of August.  It was one of the valet parking men who opened my door, and for the first time in 6 years after greeting me, wondered if perhaps I might like a wheelchair?  I smiled and affirmed that yes, a wheelchair was the safest route for my little chicken legs to go. 

It was a day filled with so many new experiences, amidst so many well known activities I could do in my sleep.  Like stepping on the scale before I'm taken back to the exam room.  But this time?  I see a number I hope not to visit anytime soon.  108.  Oh my.  It shows, as much as I feel the frailty.

My blood is drawn and then the wait begins.  My tailbone is sore after a few minutes of sitting and I add this to my list of little concerns to address.  Yet mostly, I wait to hear what the nurse practitioner I'll see, will address with me.

I'm wheeled back into the exam room as my phone starts to ding, alerting me to test results coming back on my labs.  I decide to just wait and let Carrie the NP, tell me.

Moments later Carrie steps into the exam room and offers a warm hello. She sits down and turns to face me, seeking my eyes, and talking directly to me.  She simply wants me to know I'm in charge of how this will go.  That she wants to listen to me, and let me dictate how I want things. 

Its a new conversation and yet, it truly allows me to follow my heart.  I simply tell her these are new unchartered waters for me.  They leave me wanting her and my medical providers, like Dr. Panwalkar, to lead me with their experience.  I know the decisions are mine to make, but I welcome their wisdom, their perspective, and skill in navigating this new course we're on. 

So she smiles and we move right into my lab results. I'm a bit flummoxed by my results.  In the extra week I was given to recover- most of my counts had risen into the normal range!  I could do chemo!  What? I'm instantly struck by the power of prayer.  Nothing else can adequately explain how high some of those numbers grew! Just hearing that tiny bit of news was enough for me to say yes, I would do another round of chemo. Relief flooded through me. While I still have some lower counts, that leave me a little lightheaded and dizzy when I move at times, Carrie felt with time some of those counts may still climb as well.  The rest of the exam went by quickly.  

The chemo dose was reduced a slight amount, but the second infusion of Carboplatin and Herceptin went well.  With steroids in my system, the yucky side effects didn't show up for a few days.  But I also had just the right meds to help me combat them.  

So how am I doing?  Overall, I think I'm slowly starting to recover.  I have had a few days with pain that was hard to manage, but through the Grace of God I somehow made it through.  I can readily admit I have cried, and surrendered, and shouted when I need to.  And I'll see Dr. Panwalkar on the 22nd and will ask for his advice on what I can take to help get me through days like that. But after a few rough times, steadily the days have gone better.

I started reading more.  I'm hungry for some good reading suggestions.  I've also started eating more.  Thanks to all who have so generously cooked and served a meal to us, we're so grateful.  I always feel the love sprinkled in with all the comfort and nourishment the food provides. It truly makes a difference in our lives and I am always seeking my own ways to pay it forward in some small way.  

As hard as this has been on the boys, our bond just strengthens with time.  They check in with me often, and help with everything from getting me meds to laying in bed watching tv with me.  

My phone bings and bleeps with texts and emails- so many wonderful friends just checking in with me.  And so many others sharing encouraging words with Rick to bring home to me-my blessings overflow.  

And I've opened the door to my home, and my bedroom, where friends have come and chatted the hours away.  We just set something up in advance and they text before they come over.  It uplifts me so to have these face to face interactions, with so many going out of their way to offer support to us.

Love to you all!  

Tuesday, August 1, 2017

A small update

I hardly know where to begin.  I've tried so many times to get an update out to my dear readers, but I haven't found the best way in order to do so. 

In a nutshell, here is what has happened. 

I've been in and out of the hospital- 11 days total. 

 We simply couldn't find a method to use to update my blog in the hospital.  I also couldn't manage with my phone.  I had to rely on Facebook, knowing so many readers aren't necessarily connected to me in that way.  

I've been home now for almost a week.  Some strength returning, from a bout with a complicated infection which had me knocked down pretty good.

I even got to spend my 50th birthday in the very hospital I was born.  I don't recommend my venue, although the company I had was great.  My brother, Lee, flew in with my niece, Alex, to surprise me. But boy did I surprise him/them.  I had been admitted just hours after he left Pennsylvania.  The look of shock on both our faces as he walked into my room at the hospital was possibly priceless.  I can say, the best gift, was time spent face to face, one on one, just talking with Lee, and truly all of my guests.  Alex, my niece, was also a trooper and sheer delight to spend time with.  

The other guests we had were Rick's brother, Matt, his wife Julie, and their 3 kids.  My boys were in cousin heaven!  I was so grateful for the time they had together, despite the fact I could not see the younger kids. 

At some point in my first hospitalization, we figured out the infection I had, was most likely coming from my kidney stent.  The same day, I was taken into surgery by Dr. Williams who had placed my first stent.  The very next day after surgery my counts rose enough for me to go home.

Even though, less than 24 hours later, I had another bout with chills, then fever.  I was readmitted that Friday night.

 So many blessed events had already occurred- and they just seemed to continue.  Friday night as I sat at the clinic, I was given a direct admission from the Oncologist on call so that I could bypass the ER.    Dr. Panwalkar had already prepared him for the fact I may be calling him.  Plus, I also found out, the next day, Dr. P was on-call and I would see him both Saturday and Sunday.

It truly seems that, for all those who prayed for me, every prayer felt like it was heard and answered.  My care was first rate while I was at Sanford.  From garnering a private room, to Dr. Panwalkar coming each and every day to see me, I felt watched over.  I had a wonderful view of downtown Fargo, with an entire wall of windows to see out.  I could see two beautiful churches and even hear the bells ring in one of them.  I watched many sunrises, and sunsets.  I could go on and on.

No it wasn't all easy.  It was truly hard and difficult.  I surrendered to so many new things, over and over again.  

But here I am.  Still praying that whatever His purpose for my life might be, that somehow I fulfill that.  

I will be having blood work again today.  Then I will see a nurse practitioner, and we will decide if my counts are high enough to do a lower dose of the chemo I had July 5th.  I'm in a bit of a pickle.  The last thing I want to do is feel sick again, as I slowly start to feel better.  But with the new growth in cancer that showed up, I truly need that chemo to help me fend off that cancer.  

I simply don't know what is in store for me.  Neither does Dr. P, or any of the medical community.  My focus is narrowed to staying within each day and making the most I can out of that.  

The question I hear most often?  What can I do for you?  I'm so touched... it's simply this:

Will you all keep holding me up in prayer?  A few things on my heart: 

I'm a little lightheaded and my legs feel as though they can go right out from under me- I don't want to fall.  

My blood counts, both my platelets and my hemoglobin as well as my white blood cells are low and could use a boost. 

My boys and their precious hearts and minds are often burdened and sad- they just need to know in their hearts they will get through this no matter what.

Superman has been my superhero- and he also simply needs to know he has continuously met all of my needs and I'm in awe of his commitment and compassion.  Its ok for him to let others help, too.

I'm deeply indebted to you all!  Will do my best to get an update out at some point.  

~all shall be well~

Tuesday, June 20, 2017

The storm

At a time when I couldn't possibly articulate what the past few weeks have been like- I stumbled across this video and feel it delivers, powerfully, what living with stage iv cancer feels like.  It's two minutes of a poem, read by a man, with images that marry the words well.

Type, delete.  Try again.  These words?  No.  Definitely not.  Try again.  And again... and...

So many times the past few weeks I've sat here trying to figure out something to say.  To me, there is no clear answer to how I am doing.  I have figured out in a way, how to look ok when I'm in public, or with friends, visitors, etc., for short durations of time.  I can muster something, from somewhere, that has a semblance of "oh, she is doing just fine."

But am I?  I don't know.

I saw Dr. Panwalkar about two weeks ago.  He noticed the sound of more fluid in my lungs, but not to the point of needing to drain them yet.  He also said my blood counts had really bottomed out, so he was going to try something I haven't done in 6 years- ever.  He wanted me to have a Neulasta shot, a week after chemo.  I was told the scale they use for the bone pain you may feel from the shot, goes from "general aches in the bones"- all the way up to "bone-crushing pain."  Oh my!

But, Neulasta has the power to regenerate those healthy blood cells that you need to restore your immune system and keep your counts high enough to do the next chemo treatment.

So last week, I dragged myself into the clinic for my shot.  I could feel my counts were low already, after that first week of treatment.  Plus, we increased my dose of Doxil.  So I was chronically battling taking a deep breath.  That dry, hacking, cough I had years ago when my lung tumors were growing, is back in full force.  My heart races- despite the Metoprolol I take for it.  Thankfully, the shot slipped into the muscle in the back of my arm, and truly was a breeze.  A bit of aching, and some tenderness in the small of my back, but really, not too bad overall.

And I'm learning to just live with the constant ache in my side.  Morphine takes the edge off enough, and we'll bump it up if need be- but then my already foggy head, may not really work much at all.  For now?  I'll just be ok with where I am.  Um, mostly ok.

Because some days?  I truly wonder how I'll manage whatever lies ahead.  I have those days where I can just "go" and "do" and "be."   Yet, other days?  On Father's Day, just hours after getting out of bed- I went back.  I was nauseous and hungry.  I couldn't breathe, but boy could I cough.  I was tired, but couldn't sleep.  I was miserable.  And I was mentally just done.  I sent the men off for a Father's day lunch at the lake and some time for fishing.  Surely, I could muster a few hours alone?

Uff da.  I just couldn't, after all.  Between the dog demands,  and trying to find some food, and little everyday things, I was gassed- back to bed, every time.  Shortly after they returned home, and I requested some food- when I couldn't even form the words to tell them what I could eat?  I burst into tears... and then sobbed.  And sobbed.  It had been a very long time.  And Superman, held me again, and let me- let go.

I had earnestly prayed on and off all day.  I simply needed Him to know, I'd go if he asked.  Was this what He has been leading me too?   But I'd stay and live out His way for me- I just needed a little something.  Anything- to help me through.  I was deeply surrendered.

 We were all spent that night, and tumbled into bed early.  My sleep meds kicked in and I slept well.

It was the early morning sun bursting through my window that awakened me yesterday.  I moved over into the recliner in our bedroom, and was struck by how my breath stayed with me.  I took my meds, and moments later, also noticed my heart slowing down for the first time in a long time.

And then that smell tickled my nose.  Freshly.  Brewed.  Coffee.  It smelled wonderful for the first time in a long time!  Thank you, God!   I sipped and sipped, most of it, and enjoyed it. The light, that seemed to be flickering off in the distance, was starting to steady itself.

"This"- whatever you call it- "this" is exactly what I've yearned for- longed for.  Just a little bit of me, returning to me.

This Thursday I will have a Pet scan at 3 pm at Roger Maris.  Next Monday,  I will have a Brain MRI at 2pm.

How can I pray for you?  I will bring lists with me to the clinic in the hours of wait time, and sedation time I will have.  Focusing on YOU, truly helps me.

My gratitude continues to fill and spill, when the distant hum of life beats at my front door.

My love and blessings to you all.

Thank you for even just showing up here!

Friday, May 26, 2017

...become a lake

“The pain of life is pure salt; no more, no less. The amount of pain in life remains the same, exactly the same. But the amount of bitterness we taste depends on the container we put the pain in. So when you are in pain, the only things you can do is to enlarge your sense of things.... Stop being a glass. Become a lake.”

-from an aging Hindu master taken from Mark Nepo, The Book of Awakening

As I look at this pic of me, and I sit trying to cobble together some words, I think, how the heck was this just merely a week ago?  I was all scrub-faced, cleansed, and ready to go into surgery.  They'd be coming for the "walk" soon.  You don't often see people walking to the OR by themselves.  But as long as you can move under your own power, why not?  So not only do you walk into the OR on your own, but you also place yourself on the table.  I had to keep scootching myself down the table to get in just the right spot.  Then they grabbed the line accessing my port and gave me a little "Mai Tai party concoction" to put me in twilight land... except my tolerance has grown... so we chatted a bit more before I clunked out.  

Waking up is always a sketchy experience to me.  I feel like I've gone somewhere, and I'm trying to "come back" but where the heck am I again?  I just feel shooting pain, and my words will only come out, one at a time.  So I say "Pain, pain, pain... there... as I poke the right side of my stomach."  They ask what it is on the pain scale and I say, 9? 9? 9?  My thoughts perseverate... until suddenly I start to relax into my recliner, and I calmly say, "8,"  just once, and slowly smile.  

I hear someone say, "thank goodness, she got a lot of fentanyl, and should be good for quite awhile."

I smile again and shake my head up and down, "7," I say and smile.  

But just as suddenly my stomach churns and my eyes grow big as I say,

"Vomit....ohhhh vomit, quick."

My nurse, thankfully is more than quick!  She grabs the plastic green bag, and just as quickly cracks open a vial of peppermint oil with jojoba.  She runs it past my nose a couple of times, and then lays in on my chest, so that I continue to breathe it in.  And it works!!  Slowly my stomach calms and as I feel like I'm drifting off to sleep, they say. "So are you ready for toast?  If you can eat, you'll be able to go home soon!"  

But the thought of the nausea has stayed with me, and an emphatic "no," comes out.  Yet barely a few minutes pass, and she mentions toast with jelly, or peanut butter, or honey... and she has me at honey.

Best toast I've tasted in awhile.  

Not long after that, I'm off to the restroom with help from my nurse.  I'm definitely sore.  And the color is tinged with blood, but I otherwise feel ok.  Sleepy, and ready for a nap, but doing ok.

I sit again, and my blood pressure reading sets the monitor off.  Its low, very low.  I'll be sitting awhile longer and getting some fluids in.

But its really just a few hours and suddenly I'm given the ok to go home! 

Is it a little sad to say, going to DQ after surgery has become a tradition?  Hehe.  Well, then so be it.  I just wanted a vanilla malt.  I could hardly keep my eyes open, but I could drink, and the sweet and sticky ice cream put me right in touch with joy again.  The blue sky, with the sunshine peeking through the clouds didn't hurt either.  I think of the quote- and the sky has me visualizing waves of a lake. 

I arrived home around dinner time and my friend Sue brings dinner all ready to eat.  Thank you, Sue! The boys ate, and I crashed.  I slept deep.  I slept long.  I shut out the world, despite the dings from my phone.  Everyone offered to silence my phone.  But those dings?  Are music to my ears.  Each one a prayer, a hopeful message, love coming through, so many words, from so many people, and it makes me feel less broken somehow.  Its like dipping my toes into the cool water of the lake.

Later that night, my friend Anne brings these beautiful pink flowers to set on my chair on my front porch.  I do it every year, and when it sat empty for awhile, she thought of the nicest thing to brighten my day.  She stays a good hour or so, and I am still pain free and doing pretty well.

A few days after that, these arrived! Another planter, perfect for my deck in the back.  Thank you to the Cheney family!  And yes... I found the...

Inchworm!  Isn't he cute- so fun to turn the pot around and suddenly see these two big eyes on an inch worm staring up at you!

We're simply blessed, and abundance pours through our door.  When your church friends, make a hot dish and bake brownies and just bring it humbly to your door- I can't say thank you enough.  Its comfort food, that nourishes our bellies and again, glues a few more bits of those broken places together.  Its also expanding the lake.  Thank you to the Narum family- you blessed us more than I can possibly say.

My thinking starts to change, I notice.  Because I'm human, and I wonder how much more I can do sometimes?  I'm hunched over, gripping my sides as I try to walk before I run out of breath.  I have just  little tufts of hair sticking up everywhere- more white than golden brown.  Oh how I've aged.  I feel it everywhere in my body- I'm uncomfortable at times, and pain-filled at others.  

But He calls me to do, and go through, and then He shows up- in the food, and the gifts, and the people who call or leave messages, or give our son a ride.  How can I NOT do this?  

And this last card, was just the word I needed to grip.  Plus the scripture inside?

Luke 1:37

For with God nothing shall be impossible.


Thank you to the Weiss family who brought the most soft hat to wear from an Etsy site called Hoodawear.  Hooda is soft, cute, and so comfortable to wear.  

I haven't gotten photos of everything.  My auntie made food that reminded me so much of my Grandma- as much as I miss my mom, Marny and Carol, my mom's sisters have both come for an afternoon of visits.  The facial expressions, the mannerisms, the words, the laughs- it brings my mother to me and I feel so comforted by just that.

So I'm going to a graduation party or two tonight.  I'm going to try to get out a bit, and enjoy seeing friends, and having some yummy food.  Then we'll be gone for a few days- while Grandpa comes to stay with Crosby we hope.  

In another week I'll see Dr. Panwalkar and we'll see how I am doing.  I had no symptoms before I had surgery, and I don't have any now.  I have no way to gauge how I am doing?  So I'll just go along with good.  I'm good, and that's all that really matters.  My "sense of things" sure has grown, and I am trying to be the best lake I can be.  

So grateful you all have become my tribe- and help me warrior on- in more ways than you could possibly know!  

Wednesday, May 17, 2017

Hoping... and a prayer request


For those that don't get the Facebook posts: This is Rick: Vicky's surgery went well and the stent is in place between the kidney and bladder. We are hoping this will help her regain kidney function. She is back home now and resting, hoping for a quick recovery. We all thank you so much for your support and prayers - the Westra's.

"I considered the reality that sometimes suffering comes because of the decisions we make; sometimes it comes as a way for God to gauge His place in our hearts; and sometimes it comes simply as a byproduct in a world that is in a state of falling apart.  Yet no matter the origin of suffering, God's presence remains the same.  He finds us in our hearts, if we want to be found.  His power to filter the worst that life has to offer, with goodness remaining, is our great hope."  Jay and Katherine Wolf. Hope Heals.  

I've dog eared and underlined so many passages in the book Hope Heals.  Katherine and Jay spoke to me in ways that made me again feel as though they had walked a mile in my shoes and could tell parts of my story.  Even though she had a stroke, and spent two years living in a brain rehab- the wisdom they garnered breathed life into me.  I wanted to lean in closer, and re-read the words, because each time I gathered a bit more I could cling to.  

As I finished the book, I had to ask Him, "What are you preparing me for?"  So many long days and nights of one thing or another that has me in an uncomfortable place most of the time- with no easy answers, or quick fixes.

Its funny how you both know things are changing, and yet have no real idea how it might all play out.

Like today, when I had to go in for a renal scan just to keep an eye on what my kidneys were doing.  No big deal.  I'm not nervous, or even sweating it at all.  3 months ago I saw the urologist, and he felt we should do a baseline scan of my kidneys and then repeat them every 3 months.  But somehow, I got sick and couldn't make it in.  And I dropped the ball.  I didn't reschedule.

So there was nothing to compare this scan to...

And yet..

Rick came with me today.  And got to sit in the room while the scan took pictures for 35 minutes.  And he saw that at first?  Only 1 kidney showed up.

Then after they put some lasix in my iv?  Suddenly two kidneys showed up, as my bladder filled.

But after the scan we had two hours until the we saw the doctor for results.  

So we went to Blackbird Woodfire for pizza.

Its gloomy, windy and quite chilly outside.
The warmth from the pizza oven pulled us right in and the pizza was delicious.  
In little time we were whisked back to our car by the wind.
I barely sat down in the waiting room and I was called back to see Dr. W.

He just blurted it all out instantly.  As he flipped on the screen to show me the scan, he said I have my left kidney functioning at 75 percent, while the right kidney only functions at 25 percent.

He was sparse with his words, and I was trying to connect the dots.  

I finally said, "ok, if you were to put this in a category of little, or moderate, or 'oh its bad,' where am I at?

And without hesitation, he said "severe."  You are in sever kidney failure and if we don't correct it, you will lose the function of your kidney.  Then the bigger issue?  How long can the other one work?  And how much chemo will it be able to process?  

So my options?  Are to do nothing... or have him put a stent in.

Dr. W had already in our last appointment told me he dislikes the stent option.  They're painful, they can cause infections, and the list goes on and on.  Plus you have to replace them every 3 months.

But what I really needed to know?  What would Dr. P say?

I love doctors who say, "well why don't I just call him?"

So he did!!  Dr. W grabbed his cell phone, and within a few rings he is talking to Dr. P.  

And when he gets to the part about the stent?

I hear a resounding YES, lets do the stent.  No hesitation.  He is hopeful my new drug will work and we need that kidney to perform better.  He has hope.  

So I smile as I say after they hang up,  "So I guess we'll be doing surgery!"

And again he floors me, and says, "Yes, how about tomorrow?"

I guess "severe," goes hand in hand with "surgery tomorrow."

So at 9:15 am, I am set to go to the Same Day Surgery unit to have a stent put into my right kidney.  Its a short procedure, and if all goes well I should be able to go home tomorrow.  

Would you all pray for me?  That the stent placement goes well.  That with a compromised immune system, I don't garner any infection.  And that "all shall be well."  We have some teary-eyed boys in our house, can we be gentle with them? 

I'm still filled with hope.  Will you join me in believing too?

I'm closing this post with pics I meant to share a long time ago.  Nolan, with his sweet new friend, Taylor.  She was, simply stunning, the night of prom.  They made such a great couple.  

And she has been a wonderful guest at our house.  

We had a hint of spring that day... and it left us with just enough hope that we will enjoy more blue skies in the days ahead.

Rick will update everyone on Facebook tomorrow!  

~All shall be well~ 

Love and blessings to you all! 

Friday, April 21, 2017

Ob la di... life goes on

After I had my PET scan on a Friday, it was early the next week I received a call from Dr. Panwalkar.    Progression, was the gist of the call, my cancer had progressed, some areas worse than others- and one area in my right lung actually showed some improvement.  But it was evident I needed to change treatment, and we had spent ample time deciding which one I would do.  

I'll get to that in just a bit...

Because really?  It isn't where my focus lies these days.  I've detached a bit.  I simply don't know, can't know- do I even want to know(?) what lies ahead?  I have eyes for the here.  For the now, and the nearly now... just now.  

So what do you do with your time?  Well...

I cooked a meal.  We've received way more meals than I can count- every one of them leaving me with the desire to try some new recipes and up my game a little.  So I cooked, and the boys loved it.  Even though it took my whole day, and we devoured it in minutes.  I was so stinkin proud of that one meal.  Each day has somehow flown by, and I do little things, which feel so big, when it takes so much for me to do them.

And all of you?  Have found the most unique and clever ways to lift our spirits.

Like just last night...

Was that the doorbell?  A knock on the door?  We heard something in the front of the house...  But the fireplace fan was loud in the back of the house and the Penguins were playing- and I was out of bed sitting in the midst of the boys- watching with them.

So I didn't make it to the door on time...

But when I peeked outside... my heart stopped when I opened the door and found this!!  Ria who took all these photos of us- made us this beautiful canvas.  We've had a photo hook, on the wall, empty for the longest time... waiting it seems for this.  I moved it to get a picture of it...

As soon as the boys saw it they laughed and started the "Do you remember?" stories behind all the photos.  Remember how the marshmallows were huge!  And Colton was giddy over making s'mores.  We all loved checking out the grounds of Rustic Oaks.  It was such a great night...  and Ria captured it all so well.  I feel especially honored, when someone uses their talents, to graciously bestow such a gift on us.  Thank you, Ria!  These all breathe such renewed life into me, I can barely describe it.

I awoke to a special treat Saturday morning.  The Narum family brought us home made cinnamon rolls!  They were hot and delicious and devoured instantly.  I felt so touched they took the time to bless us with such a yummy gift!  Thank you Denette and Bill!  

We had a pretty low-key Easter.  As much as I longed to go to church and have a simple meal later at home, Grandpa Jim needed Rick and the boys at the lake.  He sold his lake home in Park Rapids and has limited time to finish clearing out all of the rest of the stuff in the garages.  

I was too weak to go to the lake, and to tired to even get myself to church, so I spent a quiet day at home.  It was just a few days past my Mother's 2nd year anniversary of her going to her heavenly home, and I was pretty melancholy.  I had even wanted to get some Easter things for the boys- who just didn't want anything.  I think I realized I wanted it more for myself, than anything.  I was so happy to have the boys all return home that night...

It was the very next day when the doorbell rang again.  It was a box... and the return address said Washington... and my heart started to beat just a little faster, and the tears finally fell.  If Linda only knew how much she "mothers me," just when I seem to need it most.  How did she so adequately send me so many of my favorite things?  Colton too- danced his victory dance upon seeing the sparkling cider.  Words of hope for me to hear, and to read with my eyes, and treats to taste- life-giving for sure.  

Thank you, Linda- its the sort of thing both my mom, and Rick's mom would have done for us- we miss them so- and you somehow gave us just the light we needed!  You're pure gift to me- and I treasure you so!

My friend Bonnie sent this home with Nolan and I clung to that message for days.  I had truly been anxious and nervous about starting another new chemo and I loved the message that rang so true in this scripture.  So thankful Bonnie!

The flowers came with a scrumptious meal- and while the enchiladas were devoured in short order?  The flowers are still going strong!  I will always love having fresh flowers around.  Thank you, Steph- you always get it just right!! 

When my friend Roxane came to visit, she gifted me with both chia tea, and this beautiful rosary!  I have always wanted to know how to pray the rosary, and this helps so much.  I have the rosary near my desk and love the weight of it in my hands, and seeing it glisten when the sunlight hits it just right.  So thankful for your thoughtfulness, Roxane!  

So here I am last week.  Having my first round of "red."  I was so nervous, and yet, somehow, through the grace of God, it went so smoothly.  I had steroids, and then the chemo.  I spent nearly the next 3 days in a jittery, high-energy, state of being.  But I didn't feel too sick, or too anything really.  A little more pain when I was maybe a little too ambitious with some cleaning... but overall, not too bad... until...

My hair fell out!  So fast!  It truly went from being on the thin side, to clumps falling everywhere.  And once again, God's grace rained down, as I just so happened to have a hair appointment scheduled for yesterday.  So sweet Amanda chopped my hair.  And shaved it in places.  And carefully left some hair in places where it may grow in?  Or it may all continue to fall out, as it is still doing.

So meet my new hairpiece!  I was so truly uplifted again, to know I had something to go to.  It fit perfectly, and simply reminds me of the hair I had once upon a time.  Its so soft, and healthy!  To all the wonderful women who contributed to the purchase of this beautiful piece of "real" hair,  I'm humbled beyond words.  Since Stella has been retired, I need a new name for this piece.  Ideas anyone?

I could literally go on... with pictures of the beautiful cards sent.  The gorgeous daily devotional that came in the mail.  The lovely visits I've had from so many...  so many things... 

I have a hard time truly understanding all of this... I'm keeping it pretty simple...

A memory came up on Facebook from after I was first diagnosed... one night a bunch of hockey moms had gathered, in my honor, and somehow we ended up doing karaoke at a local pub...  I had used this phrase... so we sang the song that night.  And its stayed with me ever since... 

Ob La Di Ob La Da... life goes on...

With gratitude and love to you all... 

Wednesday, April 5, 2017

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! 

When you get lucky

When you get lucky

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