Monday, March 6, 2017

when joy finds you...and so much more...


It's Monday morning, and I'm just glueing my seat to this chair and doing a long overdue post.  I'm sorry for any worry I cause, when I'm absent from here- I will certainly have Rick or someone update for me if I'm unable to do so and I have news about my health- otherwise just know I'm hanging in there! 


Its already been a couple of weeks since Dr. Panwalkar called me with the findings of my PET Scan.  He simply relayed to me that cancer is once again growing larger in my uterus, my colon, and there are more spots appearing in my lungs.  "Its worse, he said, it has gotten worse. But we'll start you on Taxotere right away.  You had a good response to it the first time, we only quit when the side effects grew too difficult."


So for the last two weeks, each Tuesday I've gone into Roger Maris for infusion.  But it was clear last week, something else was settling in- a deep cough and a lot of gunky green coming along with it.  So I was given Levaquin- a broad spectrum antibiotic, along with my infusion.  Boy, have I felt crummy.  I'm mostly somewhere between a recliner, or my bed, heating pad in tow, and Crosby too.

And yet somehow?  When I so desperately needed the light to shine through all the dark, I've felt it shining in at every angle.   


My cousin Jackie sent me this little treasure- a blue journal with a comfort cross that was hand made by her husband, Fred!  The thoughtfulness of gifts like these, truly touch me at a deep level.  My thank you's may mostly come from here these days, although my gratitude flows out from heart- beat by beat.  Thank you Fritel family!  



Sara said it so perfectly- I grabbed this from fb yesterday...



This sweet package arrived in time for Valentines day from sweet Peggy.  Again- she crafted so many lovely pieces together and touched me through and through.  The gift of her never ending friendship and prayers have been the biggest blessing to me.  So thankful, Peggy!



Then out of the blue, this beautiful bouquet showed up- and what I love is how color filled- it is and how much pure joy I feel, every time I lay eyes on them.  Thank you soul-sis-Linda- your abundant encouragement, prayers and ability to walk with me through all of this is such a gift to me.  



Do you know I take you up on your offers of help?  I really will reach out when I need something.  My stomach is so extended, while the rest of me shrinks in ways.  So in pure panic mode with a need for something to wear- my friend Sue went to a store and the owner graciously let her bring two bags filled with clothes for me to try on!  They were comfy, cute, in my price-range- and precisely what I needed at a moment's notice.  How lucky am I?  Help around the corner- always.  Sue fixed dinner, then brought these cute mini roses- with the heart attached on the front.  But as I go to take a picture of them, what strikes me is how the light glows in and around the roses- resting fully on that heart.


Maddy!  Look- the dutch shoes with your beautiful note brightened my day so much!  They're sitting right next to me, always.  So thankful for our friendship and shared prayers across the miles!  


Do you all remember this?  This is the documentary I was honored to be a part of!  Emily and her mom, Lori both sent me Dvd copies and Blu-ray.  I was lucky enough to have my best friend forever, Kristi come and we watched it together.  Oh my- its so powerful, and such a well done documentary.  If you'd like to follow along about where and when its being shown, please follow their Facebook page here!  Thank you, Emily and Lori!! I'm touched beyond words!  



So you never fully know how touched you can be, by the simplest things... like a mantra band with two of your favorite words- love and light- sent to you from someone you deeply admire and appreciate- who walks their own journey along side of you.  Ahem- notice the light surrounding this one too?  Thanks sweet friend!






As long as some of my days have been- the highlight is often when Rick brings the mail into my bedroom.  I treasure the cards, the meaningful notes, and all the support I feel.  I could add another whole stack to this picture, but I'll never get this post done if I don't forge ahead right now, with just what is here.  Thank you everyone! 





Its always amazing to me, that my inside and outside don't often match.  I even have some color in my cheeks here on infusion day last week.  But I carefully applied make-up, threw powder on my bald spots, and had my new clothes to wear-  because I was honored to be asked by Sanford to do an interview with their media team, during infusion last week.  I pray I am worthy because its a pure gift of telling my story- and more importantly sharing how extremely blessed I am to have been given the chance to live- despite having cancer.  I always pray someone will garner a kernel of truth about how they might do just the same- that some hope will spread- and the light will keep shining!  




Somehow my infusion flew by, and I forgot about the camera, and just spoke to my hearts content.  



And even with all of this glorious stuff happening?  The best was yet to come...

Before I get there- I just need to say a huge thank you for all the prayers- the messages and notes you send me.  The meals brought to us, the treats, the flowers.  A book from a friend.  And a handmade quilt from another... still so much to post at some point... I'm just so grateful.  


For one of the first times, I was too sick to go to the section championship game last week, in Thief River Falls, where Nolan and the Moorhead Spuds would play against Roseau to determine who would go on to the State Tournament.

So I curled up in a chair, next to my radio and listened to Larry as he spoke the words we've dreamed of hearing one day! 

"Your section 8AA Champions are the Moorhead Spuds!"  

So grateful for all who sent photos my way.  With Rick being the photographer of the Spuds, I'm pretty blessed with the special ones he managed to send me.





Nolan getting his medal from Coach Ammerman.



Just one of the many victory shots...



But the one that sneaks up on me?  The one that is priceless to me?

Is when Rick tells me that not only did Colton come running onto the ice, he literally leapt into his brother's arms and hugged him like there's no tomorrow!


And his big brother?  Hugged him hard, all the way back.

Is joy not written all over their faces?  





It was early the next morning when they arrived home.  They all burst into the bedroom and finally, my long awaited for hug came to me, too.  


So we're packing today.  Rick has been cutting and printing giant "heads" of the kids nearly nonstop all weekend.  We're all happily up to our ears in planning and preparing to go to the State Hockey Tournament, on Wednesday, with the Spuds taking on the Hill-Murray Pioneers once again this season, Thursday at 1 pm.   We beat them in OT our last game of the season.  We have so much hope for these boys, and this team.  

One team.  One dream.  ONWARD MOORHEAD! 


And one last little present today?  Dr. Panwalkar said it would be ok for me to skip infusion this week.  I'm still worn down, tired, and having some pain.  But I'm going- no matter what it takes- I'll see you at the X!!   


















Thursday, February 16, 2017

real and raw








The Flexural for my back seemed to work for awhile.  I was getting more accomplished during the days and managed to go to some hockey games at night.  

Until that one night last week. I'm so foggy right now, I couldn't say for sure which one.  I just woke up, in the middle of the night with my back riddled with a stabbing kind of pain.  Over and over again.  I quickly got up and moved out to a chair that I could sit up in.  Then I found the heating pad.  Then I took some Advil.  And... the list goes on and on, mind-numblingly so.   I simply found no relief.  Hour after agonizing hour.  I finally, flattened myself on the floor, grounding my heart and pouring out my deepest act of surrender to Him.  I crawled back up into my chair and sat,  till the wee hours of the morning and Rick awoke to check on me.  He brought me a steaming cup o Joe, and with the sun starting to announce day break, the pain finally eased.  


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


And so it went.  Each day, somehow, I'd climb out of the depths of the pain from the night before.  I knew in a few days I'd see Dr. P. and I just wanted to get by.  But I couldn't stop the slide down in to the pain the next night,  no matter what I thought to try.  From massage to pillows, to recliners, to creams on my back... nothing relieved the pain at night.

At my lowest, I simply rocked and cried, and cried and rocked, with the words of old hymns coming to mind, clinging to those words that formed somewhere deep within me.  That morning, Friday morning, the pain never did subside.  And I was done.  Physically and emotionally, I couldn't do any more.

I simply told Rick he needed to take me in to the ER.  It was still early enough in the morning that I didn't have to wait for a room, I was taken right back.

With just a few questions asked by the nurse, pain meds were offered right away.  The young doctor poked his head in the door and said they were in the midst of a few urgent cases, but he'd get me comfortable and then come talk to me at length.

I was so in the grips of pain, I forgot to mention to push the pain med SLOWLY through my port which enters my system instantaneously!  BOOM, the room spun around, the Dilaudid flew through my body and I went to sleep like I was hit with a ton of bricks.  

Again, time was elusive.  But at some point the doctor came in to visit.  Whew!  What a day he was having- two Cardiac Arrests, and a Stroke Patient, and he was overwhelmed.  

Had I ever had a scan before?  A bit flabbergasted, I assured him I'd had a few.  But we agreed another CT scan, with no contrast would be the best way to see what might be amiss.

Hours later they came to take me for a scan.  Several more hours passed and finally the doctor came back with the results.  It wasn't the left side where the radiologist saw anything, it was on the right kidney, and down into my Ureter which looked swollen.  They surmised it might be due to kidney stones, but I'd have to have a couple more tests.  But he was still so busy with his patients, it'd be a few more hours to get me to the tests.  In the meantime, I assured Rick he could leave to go to Cloquet for Nolan's hockey game.  

With my patience in low reserve, I simply put it all in black and white terms to the doctor.  If I'm stable for now- and you can send me home with the Diluadid, then could I wait at home and see Dr. P on Tuesday and go from there?

He young doc actually looked relieved, and said yes right away.  Rick's Dad came to get me and managed to get me home, just in time.  The Dilaudid, did a number on my stomach, and left me with my sides heaving.  It was enough for Rick to call and tell me he was on his way back home after the game that night.

Somehow, we managed to get through these last few days.  


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



Monday when I went to Roger Maris for lab work, I told my nurse about my emergency episode.  She took careful notes, and in very little time, Dr. Panwalkar's nurse called me.

Angela- or Angel- a, as I often think of her,  worked her magic.  I needed a new CT scan the next morning, then Dr. P would like to see me over his lunch hour at 12.  We'd hold off on chemo for the time being.  Would that work for me?

I'm always left in awe of how hard Roger Maris works to accommodate their patients.  I simply gulped, "yes," to her squeezing back my tears.

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

Dr. Panwalkar strode into the room right at 12 the next day.  "Tell me what happened," he said seriously, wanting to get right down to business."  

We relived the past week, with Rick filling in any parts I left out.  Its the most I've heard him say.  But when I talked about the pain, Rick stepped in and said, "If I can just add something, its the MOST pain I've seen her in throughout these 6 years of treatment.  And its the most stubborn she's been about taking pain meds."  

"Its true,"  I told Dr. P.  "I was taking so many, I was afraid I'd become an addict."  

Dr. P simply nodded and then sternly admonished me, "If you need more meds, then take them.  Take 2, if that doesn't help then 3.  If that doesn't help, call me.  But you need to take them.  Addiction is the least of your worries right now."  He reminded me so much of my father right then.  Firm in his words, but only because his concern was real and raw.  His mood lightened then.  

Rick said, "I tried to tell her..."  Dr. Panwalkar then stood up, reached over and shook Rick's hand, which is not something I've seen him do before either.  Then he ushered me over to the exam table.  

After the exam, He turned to the scan and showed me what he thought may be happening.  "I don't think you have kidney stones."  The scan shows fluid around your left lower lung, which is pushing everything around it, causing pain.  It is also likely filled with cancer cells.  In addition, your kidney looks enlarged, as does your ureter, and bladder."

He went on..
He'd like me to see a urologist and had already put in a call for me for Thursday.  I also needed to do a PET scan- as soon as possible- they are calling for pre-approval.  

So the pain is due to cancer, not kidney stones.  And the PET Scan will show us where it all is. 

And somehow, I was able to stay in this precarious, uncertain,  moment with him.  

I don't understand all the suffering.  But somehow, looking back I see, it fortified me for what I would need to have for the next thing I will be going through.  That tenuous rope of faith that I continue to hang onto. 

I took in all the info, and nodded my agreement.  He also said he was pretty sure we'd be switching chemotherapy and going back to Taxotere, weekly.  But we'd wait to get my results back from the PET scan.  

He bid a hasty goodbye.  

When the pain settled in last night, I reached for the Oxycodone.  And reached again, and yet 1 more time until I fell into a deep sleep.  I lasted until early this morning.  I crawled into my recliner, and was thankful to just be able to get up, to sit, and start a new day.

prayers greatly appreciated for this day.  












Monday, January 30, 2017

"All the Pretty Things,"






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

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

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

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

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

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

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

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



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

  

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

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

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

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





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









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

~all shall be well~



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
















Friday, January 13, 2017

When love arrives...

The thank you notes clutter my desk, my table, they're abundant everywhere.  My gratitude runs deep while my ability to convey it is slow.  I am deeply behind in writing my thank you notes.    Luckily, I have infusion, to at least give thanks in some permanent and meaningful way. 

Each week at infusion, I sit and number all of my gifts in a gratitude journal.  I'm literally tied down  by a needle in my chest with tubes running up to the big iv pole and pump. I'm not going anywhere!  But I find I pay little attention to time, I'm so absorbed in the writing of the journal.  

Plus I'm blessed with a visit from Sandy, the volunteer.  She is a beautiful soul, that always remembers to come and find me right where I am.  We talk about scripture, and daily devotions, and books, and everything.  Then she grabs my hands and fervently prays.  I often feel like its her, and so many of you, with me- all circling around and letting grace flow.  I receive so much more than "drugs" at infusion.  

Plus then it follows me home.  The beautiful handmade card below, with equally as beautiful words written inside.  I'm slow to say my thank- you's these days, but I pray you all know how these are the very things that get me through.  



I feel the most longing to letting Melody know how much this card touched me.  Her words were so heartfelt and she is so generous and giving, and I am speechless and filled with gratitude that these gifts that come my way.  Thank you, Melody!


And the bracelet?  I completely forgot that I had ordered it, weeks ago.  I madly opened the Alex and Ani box, and love walked in.  The gift of love... that I had ordered BEFORE I had chosen my word.  


I also feel love, when words come together that describe your feelings, but you just didn't think to align them in this way- it feels like someone knows my heart.  


Then having just read those words, you walk outside into the midst of snow swirling about you, and the sun shining through as though the air is magically glistening, and sparkling- and you feel where "calm meets chaos... and madness swirls... and love passes by."  


Then the finale arrives when the sundogs radiate their rainbow colors around the sun, and all is right with the world.



And Crosby never leaves my side, unless he is going to sneak off to find the Santa teddy bear he longs to wrap his arms around.  Love personified.  



So this is me, trying.  Because, in between all of these fleeting moments I cherish?  Are the hard and messy ones, coming at me faster than I can deal with some days. So I'm trying to align the words, and cling to the moments of grace and love, no matter how fleeting they feel sometimes.  

Ann Voskamp always aligns those words just right... 

“I want to see beauty. In the ugly, in the sink, in the suffering, in the daily, in all the days before I die, the moments before I sleep.” 




Sunday, January 1, 2017

One little word... 2017

It probably started with the coffee stain.  It repeatedly caught my eye as I trudged up and down the arena steps.  Somehow a sticky dark substance had spilled, and run and trickled into a little pool, in the exact shape of a heart.  I pondered if it was picture worthy?  But I simply smiled and huffed my way past each time, the image seared in my mind.  It's funny how these little tiny things, can somehow have such a big impact, if you let them.  But let me back up a couple of weeks,  and explain a bit more...


I heard someone say the word normal can only be found as a setting on your washing machine.  Touche.  Yet I was determined this Christmas to come as close to "normal" for our family as I could. But the abundance of blessings we felt from friends and family, was beyond the confines of that simple word.  I'm not even sure when it began? Just one thing- which led to another thing...


For the longest time, the surprise arrival of this tree ornament was a mystery to us.  But the delight of someone making a family heirloom piece we can put on our tree each year, is treasured by me.  It made perfect sense when our friend Ria mentioned it to me- she is after all the vision behind the photos that continue to make my heart soar.  Thank you, Ria.


And when the hockey loving sons, receive cool hats and t-shirts from Teags & Ry, how can we not feel special?  Their product line continues to expand in such fun and unique ways!  You'll have to just click the link to see for yourself.  Thanks Alyse and Jayme!  




With boxes and cards arriving continuously,  the magic of the season grew daily.  I treasure this handmade clock from my sweet friend Peggy in Missouri.  A vintage card carefully decoupaged on this wooden piece with my favorite shade of blue in the background.  It's sitting next to my computer desk so I can see it daily.  We loved the goodies you sent us- so thankful Peggy!



Eileen, in California, sends us this beloved vintage hockey calendar each year.  It's so authentic, it makes you want to walk right into the picture and lace up your skates.  So touched Eileen- thank you!


The hockey stick and mask ornament have been on our tree for many years- but the surprise of the orange spud ornament was just perfect.  Thank you, Heidi!  The boys love it! 


Linda's box arrived with this sleigh wrapped in plastic, and a bottle of sparkling cider that happens to be Colton's favorite.  I tucked the sleigh under the tree to open for Christmas.  It was filled with goodies and fun things.  I miss my mom and the way she would make Christmas so special for us- and Linda helps me feel like my mom is right there with us after all.  To the moon and back, Linda.


From the 10 dozen cookies we received from a cookie exchange- so yummy and fun to eat- to the gift cards for our kids- beyond touched by everyone's thoughtfulness- we truly had a meaningful and memorable Christmas.  






Nolan's been living in a story that I could write about for days.   But he is 16, and placing his trust and confidence in his mom.  So when the young man of few words says he "feels like he needs to go to church- to feel better?"  Its all the gift I really need from him.  He raises his candle high and I hear his voice ring out... and I just think, "Let it shine, Nolan.  Always remember to seek the glow of the light when you feel alone in the dark." 


Even Santa celebrated the birth of baby Jesus on Christmas Eve.  Oh my heart.


The tree and I seem to have shrunk over the years, as the "3" boys continue to grow.  But those smiles simply say, we had a joyful Christmas with so many friends and family with us in spirit and some in person, as well.



With a couple of days to recover... we were soon off on a trip. 


It wouldn't be Christmas if it weren't for a hockey holiday tournament in St. Louis Park.  I was thrilled with feeling well enough to travel with Rick for 3 days, to watch Nolan play.


Thankfully, my hidden secret was this espresso coffee machine in the hotel.  It was truly like a coffee house version of a cuppa joe and gave me the added boost of energy to engage each day.




I relished the sun and warmth not so typical for late December in Minnesota.


Despite using a handicapped sticker for parking, I was struggling for air by the time I walked inside the arena on some days.  Standing at the boards to watch leaves me with cramps in my toes and legs later in the evening, so I climb the stairs to sit.  Slowing if I need to, but always pushing through.  Just keep going, I tell myself.  Nolan and I share this feeling of straddling the line between two worlds, wondering where we fit?  Is he Junior Varsity?  Is he Varsity?  All he can do is keep showing up, just like me.  



On our last day, Nolan texts me that he'll play Varsity his last day, due to an injury by one of his teammates.  Its always bittersweet.  

 I pull my suitcase out to the car, and can't seem to breathe deeply for a long time afterwards.  So I sit on the nearest bench in the rink, conceding, I need just a little help.  And our hockey community rises up to offer water, and to walk with me when I'm ready.  

I climb the stairs, and as I stop to gather my last bit of resolve- there it is again.  The coffee stain shaped like a heart, sitting by the very step I've stopped to rest.  I've been drawn to it yet again.  So onward I go.

And somehow Nolan is feeling it too.  He skates fast, and gets knocked down along the board drawing a checking from behind penalty for the other team.  But he bounces right up.  Onward he goes too, strong and determined.

Then this...  the next move he goes backhand and sinks the puck into the net!  


His teammates celebrate with him, as my heart soars.  We go on to win the game. 




It's sealed when he comes out of the locker room with the hard hat on.  The goalie, his friend Lance, awarded it to him.  It's a tiny moment, with a big impact that's helped propel us forward yet again.





We're home again, about to begin "chemo nesting."  I'll have labs drawn early Tuesday morning, and a visit with a nurse practitioner, then infusion on Tuesday.  


But I linger here, in my new quiet computer space.  What should my new word be?   What has been made abundantly clear to me,  at the "heart" of everything, just like that coffee stain... is one thing.  So why not just lead with my heart?




As we head off into the new year of 2017, my one little word is love.  







When you get lucky

When you get lucky

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