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Showing posts from February, 2016

Broken and Bent

Today is a hard one.

Maybe it's the broken car that kept dying in Utah and is dead today.
Maybe it's the way my schedule bends under the pressures that I face this weekend with work., I feel broken and bent.

This week has contained 48 hours of the most intense experiences, reflections, and moments.

Heaven has been closer than I could have imagined but in the next second, light years away.

My mind is trying to find a way to escape this.  I look behind me and see sorrow and suffering catching up.  I can not dodge this and I see that more than ever today.  I want to dodge it.  Run away. There must be something I can take to escape these feelings that overwhelm me today.

But then, I heard a phrase...An opportunity to bend.

I, is an opportunity to lean into God a little more than I have needed to.  Bend, to reach his reaching.  There is no other way.  I can cry all I want.  I can throw the most amazing pity party but that isn't going to c…

A new path

A very long day at Huntsman Cancer Center.

It was surreal sitting in the hospital.  I sunk down in a cozy seat of denial.  Even two hours into the appointment, I was sure Shelbie didn't have cancer.

I have been talking to Shelbie about trying to take on a little more responsibility in her own care.  It's time she start finding her voice and expressing her needs.  That experiment started today.  Her dad and I let her go back alone for the blood work.  It was hard.  So hard.   They had to take 13 tubes of blood!  Of course she did fine.

I really loved our new doctor.  He is from Lebanon and has the best bedside manner and sense of humor.  He is quiet and then just interjects a joke or sarcasm, completely out of the blue.  Totally our type of doctor.  It felt amazing to be listened to and not brushed off as being crazy, dramatic or making stuff up.  He was kind, gentle and very much like our doctor from Seattle.

Prior to seeing him, we saw a Fellow.  He too was very impressive.…

Oh The Places You'll Go

I did not sleep well last night...Dr. Seuss was looping through my head. All. Night. Long.

Oh, the places you'll go...How in the world did we get here?

It's so hard to believe that Shelbie was once so small!  So innocent.  I love this picture of her when she was two years old.  It was taken just a couple of weeks before her first major seizure which left her unconscious and her first ambulance ride, and  kicked off 6 more years of multiple, major seizures... and a picture taken just a month before Spencer was born.  It's a picture that marks the start of her platelet and immune issues, though at the time, I had no idea the gravity of it all. It's a picture that speaks volumes, a thousand words of what we were in for.  In two years she had already endured much and had already experienced a quick trip to the other side of the veil when her heart stopped at just two weeks old.  It hasn't been an easy life for this girl of mine!

In 2009, after 9 months of chemotherapy…

Here and There

Well, another week of waiting has come and gone.  I have continued to try hard to see the blessings amid the struggle.

Last week, I was asked to be the chorister in church.  I wanted so badly to say NO.  It's not that I don't want to serve but it's very hard for me be in large groups of people anymore, let alone standing up in front of a crowd doing something I haven't had that much experience in.  Not only that, the stress of trying to find a substitute if I have to be gone seemed more overwhelming than anything else.  I find, it's the little things that are sometimes harder to deal with than the big obvious things.

When I thought about doing this, I ended up swimming in a pool of anxiety and panic.  A number of times I picked up the phone to call and back out gracefully.

Today was my first day 'on the job' and I was not feeling joyful about it.  I sat there before the meeting started and a lady approached me.  She said, "Kathy, I had an experience w…

Long Insights From the Past

Today marks the anniversary of the executive order placed by President FDR to incarcerate Japanese Americans just because they looked like the enemy.  This came shortly after the bombing of Pearl Harbor.   I have actually read a few books on this little piece of history and have found the entire situation completely fascinating.

There is no shortage of articles today, where you can read about the Japanese internment camps.

What really struck me hard today, was this article from NPR.  You can look at it HERE

The article is about three different photographers who captured images from the Japanese Camp Manzanar.

The first photographer invited to take pictures,was a social activist, Dorothea Lange.  The second was Ansel Adams and the third, a Japanese man who lived in the camp.  Their perspectives are fascinating.

The social activist, Dorothea Lange shared a visual tour of injustice.  Her images were harsh and showed rough conditions, dusty souls that had been misplaced by the very coun…

In other news

We are still in a holding pattern as we are down to 6 days before our big trip.  We talk about it like it's going to be some fabulous resort!  Ha ha...Nope, just a cancer hospital...full of answers I hope.  Shelbie has been working through a lot of pain and discomfort this week and sweats!  Drenching, horrible sweats.  She's a trooper though.

So, in between being spiritually bipolar and other things, lots has been happening.  I think I sort of jinxed Spencer.  I thought he was doing so well, he was doing so well but now it appears that C-Diff has arrived once again!  Rotten C-Diff.  He got sick, had to start antibiotics and...and, here we go again.  Then to top off his wonderful day, his car got towed, his debit card expired and I have the new one here so he doesn't even have money.  Meh...such is life.   We have some things to work through today!

I don't have many things in my house that I absolutely love, but I do love the picture frame that hangs on the inside of my…

What will become of me...

I'm no stranger to people who have been through something big.  Big things like, staring down their own mortality or that of a loved one.  I have been privileged, in many cases, to share in their trial.  In many ways, I feel like this has been a gift from my Father in Heaven.

Lately, I have seen how certain people have been placed along my way to learn from.  It seems that there has been a steady stream of them.  I have been thinking about each one and what I can learn from them.

For some, I have found that they are meek and humble.  They don't draw attention to the struggles they have had.  They quietly go about their life and carry with them the hurt and suffering they felt from the past, in a tender wrapping of peace.  A genuine peace.  I like to think they are changed for the better.  They have a reverence about them that is nearly indescribable.  Something, I can be jealous of if I'm not careful.

There are some who show the wear and tear of life on their faces, in th…

The last 4 days

Each day, I've sat down to write. Multiple times in a day, I sat down to write. I opened a blank page and stared at the expanse of nothing.  Nothing on the page, nothing in my head. Not because there is nothing going on.

Not even because my head has nothing in it.  My head has everything in it.  Every. Thing.

I'm tired.  I'm tired of feeling tired from the moment I wake up every day.  I feel like I am in a cloud of fatigue.

My parents were here all last week.  It was so nice to have them around.  I never realize how much is missing from my life until something different comes along.  I didn't realize how nice it was to have someone else around just to be around.  They didn't solve any great mysteries, take away any pain or suffering.  They didn't pay off my debts, find me a new job or fill my freezer with months of groceries.  They did nothing; but everything.  They were here.  They were here to witness the hours of our day.  They were here to amplify the joy w…


Wonders never cease!

We have an appointment.  A little farther out than I wish but still...February 24th.

Not only will we be starting the diagnostic procedures to figure out what Shelbie has but this will be a new chapter in adult hematology/oncology care for my kids.   Hopefully.  I feel like I have to add disclaimers and dangling thoughts because things rarely go as planned; as I plan.

Today, is transfusion day.  It's going well. Each IV gets a little bit harder and harder to start since most of her veins are surrounded by so much scar tissue.

I paid a little closer attention today to her labs.  Her monocytes continue to be flagged as fairly high.  This has been an ongoing trend since last year that I haven't paid much attention to.  Monocytes are white cells that increase with infection, autoimmune disorders and cancer.   They are the first responders in these situations.

As I thought about this, I remembered that her last bone marrow biopsy this past fall, they noted an…

If nothing else...

We are being refined while we wait.

Not a day goes by that I haven't learned something...for good...or for bad.

Not a day goes by that the Lord doesn't speak to me through some unsuspecting channel.

Not a day goes by that I wonder what God has in store for us.

The story of the day is our continued wait!  The long wait.  It's getting old.  It's getting tiresome.  It's getting to be the joke of the week I think.  Like, it must not be that big of a deal if nothing is can that be?  How does that happen?

I don't know.

But, I learned this today...from Robert D. Hales- Sometimes, the waiting isn't about God slow to make plans for us, maybe it's more about me/us.  Maybe I'm just not ready for God's big plans.  Maybe, I'm slow to grow. Maybe, in all this waiting and uncertainty, there is a gift, a tender mercy...or my favorite, a post card from Heaven yet to be received; recognized.

This thought struck a chord with me.  Never before …

The Wrestle

Today in church, we talked about the point that we are here to experience joy.  It makes for an interesting conversation.

I think we grow up thinking that joy and happiness are what we signed up for when we stood in line to get a body.  Men are that they might have joy...or new shoes, or a nice car, or a fancy house, or a good time every Friday night, or a trip to Cancun because you had a really hard month and deserve a break.

In reality, we discover that instead of new shoes, or a nice car, we get a mortgage, a car payment, medical bills and a job that doesn't even cover that much.  Friday nights are spent in hopes of an early bedtime and Cancun trips are for the rich and famous but if we're lucky, we get a medical trip to somewhere exotic like Utah, or Washington. Hey, then we get creative in convincing the kids, It will be fun!

So then, what is this joy we are suppose to be experiencing.  How come it is so fleeting?

I have this feeling that people look at me with pity and s…

What's important to you?

A couple of months ago, a headline on MSN caught my eye.  It was the story of Joey and Rory.  A husband and wife who write and sing country songs.  I hadn't really heard of them before but I started following their blog.  Joey has cancer.  She is in her final weeks of life and on hospice.  Rory posts the most beautiful writings, photographs and videos.  I love their blog.

Yesterday, Rory posted this video they made and talked about what is important in their world right now.

I love that thought...What is important to you?  What is important to me?

Here is my short list...

My kids.
My family
My one doctor who still believes in me
A Wasband and me who keep trying to have a perfect divorce of peace and understanding and a        combined love for our children.
Friends in far places
Friends two doors down
Late nights laying around eating and talking.
Surprising my kids with an extra measure of love and understanding when they think I'm going to be           upset or disappointe…

How to feel the wrath

Yesterday was a shear and utter disaster in our little world.  Mid morning, I received an email from Seattle saying that the Doctor was scheduled out well into March and they would get us in for something during the next month.

I was livid.  I went from content to contempt in seconds.  I went from stable to my the room spinning in less time than it takes to flinch. My heart flooded with adrenaline and literally forgot to beat and ached with fury.  Yes, me.  Little, mild mannered me was coming apart in the most magnificent way.

I fired off emails of discontent to the nurse in Seattle and to our doctor in Boston.  I made phone calls to our family doctor.  No one answered my calls.  Within the hour though, I heard back from Dr. Shimamura.  She agreed with me that this was not something that could wait until March.  She promised me on our first phone call two weeks ago that if at any time, she felt we were in a dire situation, she advise me to stay put and work with the oncologist we have…

Weights and measures

I heard it said once, that each of our stories bears a weight.

We all have a story.  Many stories.  We measure ourselves and each other up by the stories we tell.  Often, when we don't understand something, the story takes on a life of it's own.  As humans, we have this innate need to make sense of something and we do that with stories.  Stories that bear the weight of the unknown.  Somehow, that makes it better regardless of how much truth is in the story.  If it makes more sense than reality, our own or someone else's, that's the version of life we run with.

Today, our story is hard and heavy.  It's been a hard week of trying to be patient and focused.  There has been no shortage of people making up stories about us and that is a hard trial in itself, everything else aside.  There has been no shortage of stories we have made up for ourselves to make this journey make more sense.

I don't understand why all of this is going so slow.  I don't understand God&…


Meanwhile...back in mortality while we wait for God to get his plans in place, I want to share a list of my favorite collection of quotes.  Most of them come from a book my good friend gave me 20 years ago when we first found out the kids had Shwachman Diamond Syndrome.  She was my rock back then.

The book is called, Making Sense of Suffering by Wayne Brickey.  Feel free to steal these.  I couldn't find any of his quotes on Pinterest, the resource for all things!  So, I made my own.

Every page of his book is amazing...I will make more of these little quotes because they are real gems!   Here is another of my favorites...
"Oddly enough, our vision sometimes improves when our conditions worsen, creating an occasional windowpane, or window of pain, in the veil.  A paralyzing problem can bring the stillness that causes us to pause and, for a change, reverently look at the whole scene, which is the smallest scene we can trust."
On the home front, it's been a good day.  I…

Thinking, wishing, waiting

Is February over yet?  Could this month be any longer?  Oh, wait, it's only day 2 of February.

I've been thinking about the past year; where we have been, where we are now and what lies before us.  I've been thinking about part of the conversation I had with Dr. S last week.

She reminded me that I can't become casual in the care for the kids.  I can't just let things slide.  I have to be better at advocating and following up.  The fact that we no longer have a team of doctors and here we are three weeks into this disaster with Shelbie and no doctor with an established protocol, not long term relationships...nothing.  What we did have became weird.  They didn't want to bother with us anymore.  They didn't want to bother with me.  So, instead of standing my ground, I let it slide.  When they accused me of being dramatic and worrying over nothing, I believed in them and trusted in them and I let my hunch to follow up, go. I let it go at the expense of my kids…