Wednesday, March 30, 2016

Where I've been

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

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

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

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

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

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

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

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

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

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

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

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

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

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

(Plus, I know I have Dr. P.) 

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

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

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

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

I lost most of yesterday to sleep.

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

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


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

With deep gratitude- thank you! 



Wednesday, March 16, 2016

5 years

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

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

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

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

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

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

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

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

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

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

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

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

Relief starts to flood over me instantly...

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

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

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

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

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

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

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

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

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

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

Friday, March 4, 2016


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

How about you?  What are you choosing today? 

When you get lucky

When you get lucky

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