Friday, January 31, 2014

surgery day




The garbage truck rumbles in the distance.  Colton's alarm goes off at 6 am as he has school patrol today.  We're supposed to wake to a - 17 degree temperature, or as they called it on the news, "a normal cold day, for January." Yes, only in Fargo-Moorhead is -17 considered just another day.

All these normal things go off around me, but it is anything but a normal day for me.


In just a little over two hours from now I will be heading over to Sanford for my surgery.  Medically speaking, I'll be having a salpingectomy and oophorectomy.  Or as more commonly known, I'm having my tubes and ovaries out. 

Looking back, I realize, I never shared about the day I met Dr. Christina Tinguely.  I had her husband once, Dr. Matthew Tinguely as an oncologist who was on call in the ER.  He was the first one to admit me and he stuck with me all night long running tests to be sure the pressure in my chest wasn't anything too serious.

I know after meeting Christina Tinguely she said to me right away "Oh Amit, referred you to me.  I liked her right away.

She was calm and confident.  Even though she already had two surgeries planned for this day, she went ahead and scheduled me in as well, not wanting me to wait any longer.

So if all goes well, little to no adhesions are found, than I should be able to have a successful laprascopic procedure.  However, if she goes in and finds too many adhesions, she would have to change her course and go with a midline incision and then I would have to stay in the hospital for a couple of days.

I'm missing my early morning coffee.  I have no make up to do, or clothes to coordinate- loose and comfortable is in order for the day.

But its been an uncomfortable week.  The bleeding profuse.  The cramping painful.  This feels like a necessary surgery.  While I am not prepared for instant menopause with no replacement hormones on the agenda… I wouldn't have been able to go on for long in my current condition. 

A few weeks of recovery and then we will begin a new drug to help stop my cancer cells from growing and spreading. 

Jesus Calling, January 31

I am your strength and shield.  I plan out each day and have it ready for you, long before you arise from bed.  I also provide the strength you need for each step of the way… My Presence watches over you continually, protecting you from both known and unknown dangers...I am with you and will watch over you wherever you go."  

~All shall be well~ 

Will be back as soon as I can to update everyone.  Thankful for your prayers! 








Monday, January 27, 2014

Rooster @ Roseau…


Colton's hair has always had a cowlick in back that makes the back of his head look like a mini-Dennis the Menace.  Or maybe Alfalfa from The Little Rascals.  He takes great pleasure in showering before bed and waking up to see how "high" his rooster tail is for the day.

I'd say he earned his nickname from his coach honestly.  Rooster it is.  

This mom delighted in all his Rooster ways this weekend in Roseau, MN which is merely miles away from the Canadian border.  Its legendary when it comes to its hockey history and continues to draw crowds to its tournaments every weekend.  



Friday morning we loaded up the bus and arrived in Roseau about 3 hours later, just in time to get our boys ready for their first game that night against Lake of the Woods. We played in the North rink which has the same reputation as our own North rink- much colder than the South rink.  

What it is about riding the bus and getting off to go and play hockey, and then you can't find your legs? Our boys were there in spirit, but their feet and minds had clearly been "frozen" somewhere along the way.  We lost our first game.


Day 2 we awoke to sunshine and cold with the promise of snow arriving later in the evening. 



This time we got to play on the South side and boy did that bring us some luck.  Luke, the other goalie,  got to be in net and our boys came from a deficit all the way back to a tie game.  But instead of playing overtime, we went straight to a shootout! I felt so much for Tara, the mother of Luke. Its so hard to see your child feel the pressure of making sure no goals get past them in a 1 on 1 situation.  

But Luke, The Wall, did just that.  And our forwards buried one more puck on the other side than the other team did on our side, so we won in the shootout, over Hermantown, who was rumored to be a ranked team.  Those wins always feel extra good. 


"The barn."  Full of hockey history and nostalgia. 



That afternoon it was Colton's turn to be back in the net.  I shuddered as we got down by two goals almost right away.  We were going to have to play "come from behind" hockey again and that is so nerve wracking to watch.  But come from behind we did, and with seconds left in the second period we were all tied up.  


Although I wasn't quite fast enough to capture it, when we finally went up 3 -2, Colton celebrated by doing a snow angel out on the ice.  Oh my stars, that kid, so cracks me up.  


And this little sweet one?  Watches Colton's every move.  So when he was down on the ice doing his angel?  She laid right down and did her own version in the stands- the crowd loved every second of it.  Her little eyes, seek out Colton, and light up every time she sees him.  Its almost too cute for words.   


After 2 big wins, an afternoon spaghetti feed at the Legion, and entertainment provided by the "Hanson Brothers," we were off for some fun with bowling.




Colton's coach entered his name as "Rooster," and the kid was literally beaming.  He bowled, danced and sang with the music and clearly had a wonderful time.  It was a pure joy to get to see him so thoroughly enjoying himself.



And I got to hang out with so many fun people.  This is my friend and neighbor, Anne, and I love that we have our boys on the same team this year.  Anne watches out for me always and is a true angel - as were so many other people this weekend.  Whether they helped carry in our bags, or helped get food, or encouraged Colton, or simply asked if I needed anything, it was all so deeply appreciated by Colton and I.  We are extremely grateful for the love and support we felt and continue to feel by our hockey family.


Sunday morning, after out final game and a bummer of a loss, we hit the road knowing we were about to run into blizzard conditions.  We had no idea how far we would make it before maybe having to stop and find a place to stay, but we were determined to head out.

This was our view most of the way back.  White.  Everywhere you look, the wind simply whipped the fallen snow into a frenzy of wispy, whirling, white, that clouded our vision and ability to see the sides of the roads.  


This was my view- and its not because the bus windows were dirty.  It was simply that white outside.





While every highway around us was officially closed, somehow we managed to get onto Highway 10 without running into a barrier of any kind.  We could actually see the road and the sun was eerily shining through all the haze and fog of the snow.  Had we been in a car or truck, I don't know that we could have made it through.  But the bus, and our driver, were unstoppable and we made it through a harrowing ride home safely.  



Colton and I wrapped in warm blankets and hunkered down in bed to watch tv and rest.  Our heat was turned down to 62, as there was a gas-line explosion in Canada that affected the supply of gas to our area.  We all need to conserve until they can get the supply back up to meet demand.  Its unfortunate the weather is so cold- well below zero- but we are bundling up as much as possible.  



Mom seemed to have a good weekend.  I talked to her several times throughout.  She even managed to figure out how to go off the third floor , and go down the elevator to the main floor.  She got her mail, and walked around a bit.  She also loved having her sisters come visit, and one of my cousins.  She loves the company and the distraction to the monotony she feels.  I could hear in her voice that some energy has returned, and maybe even some strength.

Will look forward to visiting her soon.  

Infusion, Dr. P, tomorrow, surgery still planned for Friday.  






Friday, January 24, 2014

gratitude amidst the mess… and the gift from our hockey family...


For some reason the day treatment unit seemed quiet yesterday.  There were very few people in the rooms surrounding mom, few sitting in the waiting rooms, and a very calm environment throughout the day.  

Mom seemed eager to get on with the procedure and let them try not once, not twice, but three times to hit a vein for her iv.  It was shortly before 9 when she was all ready to go back to the OR.  I sat in the MRI waiting room, chatting with a friend waiting for her doctor's appointment.  It was a lovely distraction.

Merely 45 minutes later, I was paged to the back room to wait for Dr. Teigen.  All the consult rooms were full so I ended up in the MRI sedation bay again, giggling at the thought of all the time I've spent there.  What better place to hear how mom's procedure went?

Dr. Teigen strode into the room and got right down to it.  "The procedure went well, your mom is doing fine.  She will be in recovery the next hour or so, upstairs.  It was a bad fracture, but I got it all.  I would bet, based on her history now, with her bones as soft as they are, she has at least a 50 percent chance of the next vertebrae down, breaking as well.  But then we'll just fix that one too.  

He is confident, without sounding arrogant, and I appreciate his insight and experience.  
The tech's tell me now would be a good time to get something to eat.  So I go off to the cafeteria and grab a big salad.  

I finish early and wander over to the main entrance.  As I pass by the long hallway joining the clinic with the hospital, I see a man gazing out the window at the flame I had taken a picture of just last week.  His whole body is turned away from the hall, and as I approach, I notice its shaking.  I can see from a sideways view, the man is quietly crying, his body racked with sobs attacking in waves.  He is curled in a ball, his feet tucked up underneath him.  

I'm choked with my own tears, and yet it doesn't seem right to intrude on his moment.  I simply walk on, uttering a quick prayer, for his sorrow, and the idea that my own loved one is fine today.  I feel God's presence and my fragile heart takes strength from the surge of gratitude I feel.

Moments later I am back in my mom's room and she is snoring away, loudly.  I have to laugh as I realize, clearly she is comfortable when she can sleep so deeply, oblivious to all going on around her.

I sit silently, waiting for her to rouse herself.  Its so quiet, very few patients near her again.  So its no surprise when a gentleman approaches our nurse, Vickie, with a question.  

He is mild mannered.  Soft spoken.  Something about his delivery has me wondering.  He explains that his wife had been in a room down the hall earlier in the day.  The doctor had brought them a picture, and they had forgotten it.  His wife desperately wanted to see it now.  Could they look in the room or would it have been placed somewhere?  Our nurse offers to help, but explains the room has been cleaned and nothing is left in there.  And where is his wife?

And then he says the words that brings the whole experience to new life.  She was admitted after the D&C and the picture of the inside of her belly before the procedure would bring such comfort.

Sweet Jesus.  As my mother lays snoring, I am reminded again, that others have had life-changing days today.  And while I've been through hard, and exhausting and challenging, my mother is doing fine today.  I'm overflowing with gratitude.  This was the perspective I needed, and it seems I got the message loud and clear.

Mom wakes eventually, sits up, walks with help to the bathroom, eats a late lunch, and gets dressed.  Just like that, she is ready to go, late in the afternoon.  I get her out to her ride back to Bethany, hug her and know she is in good hands.  


I come home for the night.  Feeling more convinced I would be able to go to Roseau with Colton.  I curl up in bed, exhausted and much like mom, I manage to sleep soundly while the phone rings, and visitors come and the doorbell rings and the dog barks.  

I awaken as Colton tosses me an envelope.  I groggily open it and find this beautifully handwritten note inside:



Tears stream.  All the tension, all the worry, everything, melts away.  Our hockey family has rescued us yet again.  We feel so fortunate to be surrounded by so many who care about us.

THANK YOU to our PEEWEE B FAMILY!  Words can barely express the gratitude we feel for such a generous and extremely thoughtful gesture.  You've touched us immensely and we couldn't be more proud to part of such a great group of people! 


I've just talked to mom.  She is groggy, but feeling okay.  She plans on hanging out in her chair, resting.  Colton and I are packing and Grandpa Jim just brought us snacks, and will stay with the dog.  

Thank you all for your prayers that continue to nourish and lift us so.  


















Thursday, January 23, 2014

"… the heart to conquer it…"



“Let me not pray to be sheltered from dangers but to be fearless in facing them. Let me not beg for the stilling of my pain, but for the heart to conquer it. Let me not look for allies in life's battlefield but to my own strength. Let me not cave in.”   Rabindranath Tagore quote


The phone woke me early out of a sound sleep.  Due to another blizzard, there would be no school yesterday.  I was supposed to go with mom to her follow-up doctor's appointment, but would be unable to do so.

So I busied myself with getting the ornaments off the Christmas tree.  I spent the afternoon writing thank you notes- very belated thank you's.  But I finally felt I was back in the groove of a "normal" day.

Until the next phone call from my mom.  After she explained the kind of pain she was still experiencing, Dr. Teigen had another MRI done.

Mom has another compression fracture, right below the one he fixed last week.

He determined it would be in her best interest to have another vertebroplasty right away- today.

Our plans for the next few days started to crumble on the spot.

Colton and I are scheduled to go out of town on Friday for three days, on a bus up to Roseau.

Rick and Nolan need to go to a tournament for the weekend too.

We had someone coming to take care of the dog.

But how?  And who?  And oh boy… my poor mom.

Suddenly I feel like "that family."  One drama after another and we can't seem to dig ourselves out in a reasonable fashion.

I'm off the hospital to spend the day with mom.

I'm clinging to that which I cannot see, cannot know, cannot feel, resting in Him, with the belief, that all shall be well.





Tuesday, January 21, 2014

tightrope walking


He stands clearly 4 or 5 inches taller than me now.  That Nolan, growing, even while I see him every day.  He stretches out before me and I blink, and miss the totality of all the inches.  It hits me over the head as I notice the subtleness to his adjustments.  He tugs his pants down, just a tad lower, so that they aren't too short. He stoops to give me a hug goodnight.  When I finally stand, back to back, with him, its me looking up at the back of his head.   And suddenly, its I who reach on my tiptoes, when I go to give him a hug.  

I'm needing so many of those hugs lately.  Hold tight.  Hold on.  Freeze this moment in time because the moments are moving so quickly and I can't grasp them in my tiny, slippery hands.  I watch as they flutter effortlessly through, sifting through my fingers, landing at my feet in clumps.  

Its both been harder, and easier than I thought it would be.

She railed against leaving.  She wouldn't go.  Her friends?  Her treasures?  Her life?  How could she, our mother, be asked to leave?

And as my brother and I watched… continuously through my head ran the thoughts… how can she stay?  She lives a triangular existence these days.  From her recliner, to the bathroom to the door on occasion.  Back and forth, forth and back.  At times its 3 tries to hoist herself up from her chair, wincing in pain around her middle, trying to steady herself with the grips of the walker, her lifeline.  While we wait, arms outstretched, for extra measure.

And what day is it?  Didn't she have her meds already?  Has she talked to her sister yet?  

The moments, here too, slipping so effortlessly by, both Lee and I, unable to grab and hold onto them for mom.  Because we would.  We'd do anything to keep her where she loves to be- her apartment- with spacious ceilings, two big bedrooms, two bathrooms, oodles of closets, oodles of space.  Kind neighbors who have formed a community of people looking out for each other.  

But as she recovers from surgery, its abundantly clear to us, she can't be left alone.  She needs that voice of reason.  That extra set of hands.  The reminders, the cues, the hints.  

She will stick out her tongue at us and mock us, while listening and obeying at the same time.  This is our mom.  And I relish "seeing her," shine through all the bits that don't resemble her any more.  

She is sassy and full of sarcastic wit.  She can be exasperating, and funny, and exhausting to all of us trying to keep her safe and comfortable. 


Then Saturday steamrolls its way in… and its time for mom to go.  We gather the things she'll bring with her.  It fits in one truckload.  As we mentally take stock around us, of what she'll need, she sits quietly in her chair.  Not saying anything, a far away look on her face.

She gets to her feet without hesitation when we tell her its time.  She has already given away one of her chairs, to a friend.  She steadily walks to the kitchen without a single glance around.  No final look at anything, and no looking back.  She walks upright, rolling her walker along forward,  right through the front door.

Although quiet, not a hint of emotion surfaces, as I sit biting my cheek to keep the tears from falling.  This moment forever etched in my memory.  

We've promised she can move back, if she regains her ability to live independently again.  And she speaks as though she will be back, while also telling us who should get her things.  

Its Sunday, the day my brother flies back home to Pennsylvania.  Mom is settled and I am back at home.  I'm still wading through Christmas storage containers lined up along the walkways through our home.  But a flash of purple catches my eye.  A wrapped, square, object, I've not seen before.  I shove aside the bins and boxes of stuff and grasp the package.  Its Colton who says "mom, thats for you!"

"Mrs. Sailer, my art teacher, made it for you.  Mrs. Herbranson (Colton's teacher) helped me wrap it to protect it and bring it home.  Its been waiting for you!  I've been waiting for you."  And he throws his arms around me.  

I wonder how long.  Days?  Weeks?  A mountain of moments I've walked through without seeing.  So we carefully unwrap the purple paper.  

Its breathtaking as Crosby's eyes pierce my heart instantly.  Mrs. Sailer got him just right.  She wrote us a note saying "your dog on your blog spoke to me… as a critical part of your family.  A member who listens and responds to your needs.  Consider this upcycled frame and ripped up magazine pages… and a dab of paint… a late Christmas gift."  

This is her second "gift " to us.  I have the other hanging on another wall and will share about it in the near future.  Mrs. Sailer is an uber talented and artistic woman.  She does not walk an easy path either, her burdens heavy and cumbersome.  But her heart is big, huge really.  And she gives of herself at times when others would be more focused on themselves.  

She is a gift.  A friend.  And she has helped clear my vision for the day- helping me see clearly- the things that matter most.  








While everything continues to swirl around us in transitions of varying magnitude, anchors have risen up, asserting their sturdiness, their solidity, their ability to bear unbearable burden.  



Mom's new home, Bethany Homes on University Drive, in Fargo.



The anchors come in the form of family who visits mom, and offers all kinds of help.  In friends who drive our boys where they need to go, and bring them to hockey, feed them, and watch over them.  In neighbors who drop everything and drive me, or check on the house, or the dog.  In a fridge that is filled with food from family and friends, and texts that send supportive words and advice.  In prayers, being said by you, by me, by all of us.  Filling in like glue around the moments slipping so precariously through our grip.  They're not lost, we'll catch them somehow, and persevere.  

Jesus Calling, Sarah Young, January 21.

I want you to be all mine… I am weaning you from other dependencies.  Your security rests in Me alone-not in other people, not in circumstances.

Depending only on Me may feel like walking on a tightrope, but there a is safety net underneath: the everlasting arms.  So don't be afraid of falling.  Instead, look ahead to Me.  I am always before you, beckoning you on-one step at a time.  

Neither height nor depth, nor anything else in all creation, can separate you from My loving Presence.


Today, I will meet with Dr. Tinguely, and we will come up with a plan for surgery.  Will update soon.  Blessings and love to you all. 






Friday, January 17, 2014

In the space between...

 “In the space between chaos and shape there was another chance.” 


The photo of the dogs appeared in my Facebook feed a couple of weeks ago.  Doggy Depot is the "Daycare" that Crosby goes to on some rare occasions.  He loves it there and clearly, so do others.  The pure love emanating from the picture has captivated me.  

As have your well wishes and prayers for my mom and myself. 



My friends Barbara and Mimi sent this to me weeks ago.  An angel to watch over me.  My blogging friends both live in Germany and yet their faithful friendship and support is such a true blessing.


My brother arrived Tuesday night.  Rick and I had spent the entire day at the clinic.  The interventional radiologist, Dr. Teigen, examined mom at 830 that morning.  Based on her "story" and symptoms, plus the amount of pain she clearly was experiencing, he felt the fracture was not chronic, not old.  


But Dr. Teigen needed corroboration, through another MRI.  He was so confident the fracture was acute or, recent, that he scheduled the procedure to cement it, the very next morning.  Hours later, on Tuesday, we waited for them to get us in for another MRI.  It was late when mom finally got her turn- one of the last of the day.  But fortunately, Dr. Teigen told us he had been "spot on" with his assessment, and mom would have her back fixed the next day, and Medicare would now pay for it.


My brother arrived later that night, and has been my saving grace.  My youngest son, has been a sobbing mess.  Too many hours, left alone at home, because Grandma needed me.  But I can't take care of my mom alone for long.  I can't do the lifting, and the pulling and the pushing that she needs, as often as she needs it. Superman has rescued me over and over again.  

Getting her in and out of the truck when she is in pain is a real physical feat that renders me breathless.  The lymphedema in the right arm makes it tricky for me as I lack full range of motion and normal strength.  Although, physical therapy has helped and I am indeed growing stronger.

On Wednesday, with the help of my brother,  we got mom to the Day Surgery Unit for her procedure. Mom did well during her time in the unit. The procedure went well and Dr. Teigen told us her fracture was even worse when he got in there.  But he felt in a few days time, the pain would subside and she'd start being able to move more freely.

I had to chuckle as we were ushered into an inner waiting room- it turned out to be the sedation room I am in during my MRI's.  How strange, to now be the caretaker, versus, the patient.

Its also has been strange to become the "adult" making the decisions for the person who has been in control for so many years.

Mom has changed quite a bit over these past few weeks.
She has become a little more stubborn, and belligerent at times, but she senses the tension we all feel.  She "tells it like it is" more often, and its not always pretty.  She is more confused, forgetting days and times, but just as quickly can tell a story about long ago as though it were yesterday.  

I am somewhere in between.  I longed for my status as a cancer patient to take a back seat, and it has.  I have become- a full time care taker.  In God's perfect timing, I came off the Tykerb, so that I could regain my energy, my focus and clarity, my stamina.  All of those have returned, just when I would need them the most.

In the meantime we are close to arranging full time care for my mom.  It will mean a move for her, for Rick and for I.  But its the best possible move for now and we are steadily stepping into "... the space between chaos and shape…" praying to find "another chance."


“How strange that the nature of life is change, yet the nature of human beings is to resist change. And how ironic that the difficult times we fear might ruin us are the very ones that can break us open and help us blossom into who we were meant to be.” 
― Elizabeth LesserBroken Open: How Difficult Times Can Help Us Grow  (Amen) 



Thank you for your continued prayers- I read each one and let the words wash over me time and again. 

Our love and thanks to you all- for the rides for our kids, the wonderful food delivered to our door, the forgiveness for our lack of responding sometimes to email or texts.  

I'm staring at my Christmas tree, snickering at the sight of it still adorned in all it's glory… sometimes all you can do is laugh.  










Monday, January 13, 2014

When it rains...



When it rains… it pours… and people, we were drenched this week.  I'm not sure where to begin, or indeed, how it will end.  What I know for sure is we are truly in the thick of it right now.

Mom had called me last Monday, saying her doctor had cancellations due to the extreme cold weather.  Could I take her in?  She had such pain in her back and truly she sounded miserable.

So we took her in.  They managed an X-ray on the spot and her gracious doctor, Dr. Sheldon, squeezed us back in to get the X-ray read right away.

She broke the news to us.  Mom had a compression fracture.  It's essentially where one vertebrae in your back has been compressed and is practically resting on top of the other one.

She admonished they were painful, difficult to treat, and would be especially tricky with moms underlying liver disease.  

As usual, mom was a trooper and wanted no pain meds.  She thought she could rally and face it.  But Dr. Sheldon warned me, the road was typically riddled with chronic pain, the possibility of surgery and lots of rehab.  

Tuesday I had chemo.  Tuesday night, while mom sounded tired on the phone, she still didn't complain of anything.  We had all kinds of follow up appointments made and in a few days would find out more about mom's condition.

And I was clearly focusing on my impending surgery- the details were still elusive.


Early, Wednesday morning while still in bed, I received a call from mom's phone.  But it wasn't my mom.  It was her building manager.  It seems, mom had tried getting out of her chair, and fallen late Tuesday night, and laid there all night long.  Somehow she managed to crawl to the phone early Wednesday, and get help.

So 911 was called and an ambulance was on the way.


By the time Rick and I got to the ER, mom had been given dilaudid, a powerful pain med, and she was feeling better.  She fortunately did not hit her head, shoulder, hip, etc.  

She went for an MRI and Rick and I sat and waited for her in the lobby.

But mom made it back to her room before we did.  And by the time we were let back in, discharge orders had been written.  Even though they had not just found 1 compression fracture, but 2- she was going home! 

We were so surprised.  But mom, was adamant she was going home and the doctor felt she just needed some pain meds and would be great.  Mom agreed! 

Wednesday might officially have been the longest day of my life.

We brought her home and she was not well.  She couldn't walk, talk, or function on her own at all.  She slept for awhile, but even after a long afternoon of rest, she needed us by her side.  

Rick and I knew we needed help.

Through a zillion phone calls, it was finally her doctor who agreed mom had probably talked a good game in order to be sent home, and that truly she was hurting more than she admitted.

Dr. Sheldon, realizing my own stage iv status, helped us arrange an admit to the observation floor.  

I have to say mom was treated so well, during her stay.  She quickly figured out, she'd better be honest about her pain and started admitting she was at least a 9 or 10 on the pain scale.  

While seeing my mom in so much pain was so hard, the saddest point came when we found out she was going to be discharged after just 3 days in the hospital.  The only stipulation?  Was that she had to have 24/7 care by someone- and that someone would be me.

My poor mother, looked at her nurse and said, "You mean my pain is a 10, and I can't do a single thing by myself, and you are sending me home?  With my sick daughter to care for me?" 

Her sweet nurse could barely look her in the eye when she nodded yes.

I have to say, it was a low point for all of us.  We were sent home with lots of good advice, and agencies we could call for nursing services, but all of that would be at our own cost.  At anywhere from 410 to 600 dollars a day, we knew we didn't have any other choice at the moment.

It seems, nobody agrees as to whether or not the fractures are new?  Or old?  Since they are in question- she doesn't qualify for transitional care, or anything close to 24 hour care at home that would be covered by Medicare.

Rick dropped my mother and I off at her home late Friday night.  Superman has been Super-sized this week.  

When I chose the word become?  Who could have known the first thing I'd "become" was a 24 hour caretaker!  I have such empathy for all those who do it, including my Superman who does so much for me.

Plus, I was completely shocked at all my discoveries as I started putting things away.

Food rotting in the fridge.  Garbage piled up in bags everywhere.  Clothes strewn about everywhere.  Clearly, my mom has been talking a good game, in order not to worry anyone, -especially me.  


Its been a rocky few days.  I haven't earned my care-taking wings just yet.

Saturday morning as I tried to help mom up to her walker, she grabbed hold as instructed- and fell over- sideways, crashing onto the side table and smashing the lamp. And I was right there!!


I've been digging so deep to find the light.  I know its there… I believe deeply, I'm just waiting.  

I sat, tears streaming the other day, as I journaled my gifts.

- the warm up in the temperature.

-the sun shining and lasting a few more minutes each day.

-wonderful care given to my mom.  

I could only see the gifts through a veil of tears- but they were there- flying from my finger tips- even though I was spent.




Then yesterday a short reprieve.  A flicker, of light.


 My father-in-law, Jim, came and rescued me along with Marny, my mom's sister.  They sat with mom so I could go to hockey and see Nolan play.  Ahh- this gift feels like grace.

And boy did Nolan play!  He scored 2 goals- with some mighty big help from Hunter, his line mate- and his team beat Bemidji, 3-0.  He was awarded the "mvp" coat to wear!  My picture is blurry and I couldn't even tell, I was so tired!  But so, so proud!  Even more grace...


And while I don't have a photo to share, would you believe that Colton played in the next game- and won the "worked like a dog" bone award for the second time!  

Both my kids, rewarded for their hard work, and I couldn't be more proud.  






Suddenly it seems to be raining grace.  I just know the right things will happen, in His perfect timing.


Its Sunday now, and I'm home for another short reprieve.  I get to shower and find some clean clothes- and I can blog for a few minutes.

We have a big week coming up.

Through more research we did find out mom qualifies through Medicare for some OT, PT and home health aid visits at her apartment next week.  Thank goodness!  

Plus, my brother has offered to come and help.




As I sat journaling at the hospital that last day,  I saw this image out the window and somehow felt a moment of grace- through fire this time… no rain, and a lot of sunshine to boot.  

Life is the fire that burns and the sun that gives light. Life is the wind and the rain and the thunder in the sky. Life is matter and is earth, what is and what is not, and what beyond is in Eternity.
Lucius Annaeus Seneca


Dr. P found an OB for me here in town and I have an appointment with her on the 21st.  

I do not have internet access at my moms other than short bursts on my phone.  I will do my best to come back and update soon!  

I'm going to close by thanking you in advance for your prayers.  

And how can I pray for you?  I have quiet moments, when mom is resting, and with no internet I have found plenty of time to be in prayer.  Please feel free to leave a request in the comments or email me.  









Wednesday, January 8, 2014

mixed...


 " Well some things don't ever get settled.  You just make a place for them.  Learn to let them sit there with you , side by side with the good."  Oxygen, by Carol Wiley Cassella


The temperature yesterday read -23, but with a 15-20 mile an hour wind, the wind chill factor made it feel like -55.  Honestly, anything getting below zero is just plain cold.  -55? Is when cold becomes just painful to experience.

But it doesn't hold us back.  While Minnesota Governor Dayton did close schools on Monday, my need to go to the clinic for a physical therapy assessment couldn't be put off.






My session went well.  Linda, the PT, determined that I have both lymphedema, (swelling in my upper arm and down in my fingers and knuckles) and cording which starts underneath my arm where the radiation of the lymph node took place, and travels down to my knuckles.  Its a tight feeling within my arm, and it feels like a "cord" that is tight and tender at the same time.  Its uncomfortable, but not painful.  

So Linda showed me some exercises to do.  She also fitted me for a compression sleeve, and glove.  They take some getting used to.  And what we don't know?  Is how I will respond to treatment.  

Afterwards, I walked from the PT building through the skyway over to the main clinic and got my blood work done.  As cold as it is, I love seeing the sun shining and the crisp and sharp look the cold brings to everything. 

My lungs don't necessarily respond well to the frigid temps, but I pay them as little attention as I can.  

As I am sitting and waiting for my turn, a friendly face appears before mine.  The woman says "Are you Vicky?"  "You spoke at the Health conference right?"  "I met you there and I read your blog."  "Can I just give you a hug?"  I'm swept up in her big hug and listening as she continues.  "I've had the surgery and I just wanted you to know its good.  I am doing well.  You'll do great."  She says such kind things, and before I can ask anything more about her, she is gone, leaving me sitting there smiling."  I'm so caught off guard at being recognized, I never adequately recover.



Today the temp was a mere -15 when we left for Roger Maris.  As I chatted with Cathi the receptionist about the upcoming Pink concert, my pager was already vibrating in my hand.

It was a new nurse who took me back today.  She told me to forgive her, it wasn't her usual job, she was only filling in.  But she had been told by the other nurses "Oh its Vicky?  She is so easy, you'll be fine."

I laughed and sent up a quick prayer, "okay, lets make this one easy too please."

Dr. Panwalkar made a hurried entrance.  

He asked a few quick things and then smiled and asked about our holiday.  

"Well…" and I launch into the trip to the ER, the bleeding, the tests, the wondering, the worrying.  He looks completely surprised.  He listens to me and says, "well lets just get those ovaries out then."  I'll call the OB and talk to him.

In my mind, I am already trying to decide how to tell Dr. P. The doctor I saw wasn't overly optimistic about me having a good benefit from having my ovaries out.  Statistically, it doesn't improve my overall survival. And the risks of surgery are greater because I am a cancer patient. He wouldn't really recommend me doing this surgery at all.  It had been so hard to listen to him tell me this.  I know Dr. P  would not recommend having them out if there weren't a true benefit.  Yet I am stymied in convincing the OB otherwise.  Besides...

Do I want to have a surgery done by someone who isn't confident its the right choice for me?  

But first, we have to tackle the news I've been waiting for...

Dr. Panwalkar turns the computer screen to me to go over my scans.  "Your brain scan is good. Nothing new."

I'm relieved.  And yet, I know in the way he has said it, the next thing he says will not be as good.

Oh how I know him… more so in the lapses, and lulls then the words themselves.

Your ct scan, however, shows 2 new spots.  

Ahh. There it is.  The NED wrecker.  He is just a fading glimmer on the horizon now.

Your tumor markers have also slightly risen up out of the normal range now.

He then proceeds to show me on the scans.  I admit to him I've started up with a bit of a cough again.  And the cold and how it hurts.  And… well, I've certainly wondered.  

"So lets stop the Tykerb," he says, smiling.

I'm somewhat relieved and yet surprisingly saddened too.  

His eyebrows raise and he says, "Is this not what you have waited for?"

"It is," I say, "but part of me feels like, better the devil you know, than the one you don't."

So what is next?


Its then that Dr. P gets paged.  And he reads the first message and doesn't respond right away.  Then, almost instantly a second one comes, and this time he excuses himself and leaves.  

He is gone for awhile.  Rick and I sit and chit chat idly.  

He suddenly reappears.  But he is visibly different.  Subdued.  Serious.  Is that sadness I am seeing?  Rick says later he read it as sadness.  Whatever it was, whatever he just did or found out, wasn't good.

We're more quiet now and my mind rehearses the question I need to ask him, as he goes to examine me.  

Afterwards, he is again quiet.  He is both a million miles away, but observant and still with me.  He also knows me too well.  "What it is you are thinking about?" He asks.

And then the whole story about the OB and how I feel tumbles out.  

"Can I see a different OB?"

He quietly muses, "yes, I just don't know any of them.  Its hard to ask them to do something on short notice for you when you have never met them." 

We discuss a few options and then he comes up with his own idea of who he can ask.


We conclude with the plan of finding the right OB and getting the ovaries out. Then recovering, and then he suggests a hormonal treatment, Aromasin, to see if we can get the tumors to respond to that.  

"We have some time to try and see if it will work, and if not, we can consider other things later."

He walks me to the infusion center, his hand rubs a circular motion on my back as he pats me and then offers a quiet good bye.  


















Sunday, January 5, 2014

"Word Girl"


She called me "Word Girl." 

I think I'd add that to my list of things "to become."


And yet,  I almost completely forgot.  Molly Guthrey a writer/reporter for the St. Paul Pioneer Press newspaper, interviewed me about my Ali Edwards "One Little Word" choices over the years.

Here is the story in the paper if you'd like to read:





Molly also chose a word and writes about it here.




Thank you for all the prayers and words of support on Friday the day of all my scans.  The frigid cold has kept me inside the house other than venturing out to the clinic.

Tomorrow, while school was closed by the Minnesota Governor because of the near record-setting wind chill temps they are predicting to be near -60 (shudder) I will be going back to the clinic to begin some physical therapy on the arm I had radiated.  Pictures coming soon.  I have some swelling in my fingers and knuckles and the beginning of what looks like lymphedema.  In my write right hand. More details soon.  




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When you get lucky

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