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Showing posts from 2018

It's not what I expected

I figured out today,  that this is what I want on my headstone when I'm dead...
Life...It's not what I expected.
So, I think I'm set.  Chocolate Chip cookies for the luncheon meal- just cookies, and that on my headstone.  They can't be crummy, hard, crunchy cookies but thick, chewy, chocolately cookies. 
I don't know why I think about these things but I do.  Anyways...
Two weeks ago, I was asked to write a brief description of my life, the history of our little family.  It was read to an LDS Youth Group in Utah, at a Pioneer Trek.  I am going to repost what I wrote, since typing is still really hard and time consuming.  It's kind of long-ish.  It was read at the top of the Women's Pull.  The women's pull is when all the young women have to push their handcarts up a steep hill, alone, while the young men stand at the rocky top and watch quietly without any kind of encouragement or help.  It helps teach the youth about faith, patience, trust, but it…

Post Surgery

Got a hand it to the surgeon...see what I did there.
I got the stitches removed today except after the nurse took them out, the PA came in bewildered why they were taken out.  He wanted them left another week.  Oh well, I wasn't about to have them put back in, so I am just being super careful not to split it open.  Of course there are stitches inside so it will be fine. 

I didn't get to see the surgeon on this visit which bugged me because I really wanted to know what happened and why it is so much harder than I thought it would be.  The PA didn't really know since he wasn't there so I got the surgical notes.  He did have to take the mass off of two ligaments and ended up taking out a nerve that was damaged.  He also had to do some cleaning up of the joint itself and it was much deeper than he thought.  So, I guess that explains it.  
It's extremely swollen and sore.  I've developed a sudden case of Tourrette's because if I move it or bend it too far, the …

The driving force

Not to beat a dead horse but this week was long and rather hard for me.

It takes me a minute or two to wrap my head around things.  I'm a big fan of letting things percolate before I really grasp an understanding of the experience- whatever it may be, good or bad. 

Hand surgery clearly isn't a harrowing experience in and of itself.  It's rather lame actually and unless you lose all function of your hand, it's merely an inconvenience.  I live my life from one inconvenience to the next, everyday, so I've really been caught off guard with how hard it's been.  Not only that, I feel like I need to diminish my story because its nothing compared to just about anyone else, but especially my kids.

It all boils down to the expectation gap.  I expected it to be something different.  I thought it would merely be a hiccup over the course of one day.  I planned to sleep it off Monday and be back to normal Tuesday.  Instead, I have been completely exhausted and have had to sl…

Catching Up

It's been the longest week ever!!  I was reminded this week about what a poor patient I am.  I am a much better caregiver than being the feeble, handicapped one.  It completely wears me out emotionally but the kids have been so amazing!  They have jumped in and helped out in more ways than I imagined. 
Spencer was able to come home for the holiday which was great.  The kids connected in new ways they haven't before and it was really great to see them grow even closer. 
We went to the parade on the 4th.  The funny thing is, we hate the parade.  We all hate being in crowds, we aren't big party/social people.  I would have been happy spending the day sleeping since I have been so tired from pain.  But...I got dressed, put on a hat, since one handed hair washing is no fun!  It was alright sitting in the sun and doing nothing.  Sam had to work at the Idaho Falls parade and we were going to go to that parade to support him but I really wasn't feeling well enough for that mu…

Surgery Day

What can you do with one hand?

Basically nothing...Just kidding. 

I was seriously unprepared mentally for this surgery.  I've had a fair share of major surgical procedures but this one caught me off guard.  I went into this thinking it was just a very minor thing, in fact embarrassed to even mention it.  In my mind, it was on the same level as a mole removal!!

Nope...not the same.  This is my new soft cast for two weeks.  It's not really soft though.  There's a hard plastic shell under all this cotton and wrap.  It goes from my elbow to fingers.

I was not one bit nervous about this even though the plan was to just do an arm block.  That was still what happened, sort of.

Technically, its called a Bier Block.  They force all the blood from your arm and prevent the blood from coming back with very tight tourniquets. Then, they flood the veins with Lidocaine.  It was excruciating pain and burning!! I was still so oddly calm but they gave me Versed in another IV and the next th…

But First

There they were, fiddling with their nets and Christ comes up to them and says, "Come follow me."

By all accounts, they did.  They dropped everything and followed Christ. I'm certain the Gospel of Mark didn't edit out the part when Simon said, "Well, my wife had a special dinner planned tonight, we are finally having lasagna, so can I meet up with you later?  After dinner maybe?"

Peter probably didn't have prior plans to attend the chariot races later that night.  I'm guessing that not one of them said, "Follow you?  When?  Now?  Where are we going? Then what?  Will we be home for dinner?"

Nope, they straightway left and followed Christ.

I have thought about that over and over this week as I've been carrying my little experimental bowl, filled with God's plan each day.  I have tried to be accepting, understanding, hopeful, grateful...all the stuff disciples are made of.  Instead, when I watched God filling my bowl with his will, it…

When and then

Sitting with our oncologist today, I discovered a hard truth about myself. 

My life is a series of 'Whens' and 'Thens'. 

When I get these two projects done, then I will have time to spend with you.
When we get through these next appointments, then things will be back to normal.
When the kids are feeling better,  then we will come for a visit.

Everyday, I hear myself say AND THEN...

The problem is, we never get to the end of then. There is always another then and life becomes nothing but chasing the then. 

For months, I keep hearing other people say, "Things will settle down soon, and then..."

I hear myself telling my kids, "This is just a rough patch and'll be able to do..." 

It dawned on me today, while we listened to the disheartening news from our Oncologist, that we have to stop waiting for the past to catch up to us.  We have to stop hoping for the future to fall behind.  We have to stop living for When, or Why, or How...and live…

A long process

The hardest part of blogging is the title. 

This is just an update in the middle of our busy week.

Yesterday was all about lung issues with Shelbie.  It ended up being a short visit because she really can't start treating anything until she knows what she is dealing with.  Our Pulmonologist, quickly said, "Let's biopsy these ASAP."

Until...I told her about the last biopsy she had and how difficult recovery was. Still, she is not feeling good about that PET scan from April the results it showed.  Her biggest worry are the enlarged lymph nodes sitting around the lungs.  She thinks a biopsy would be easy enough in terms of getting to those ones. 

There are basically two different roads this will take...

1.  She wants her re-scanned.  If the lymph nodes are still there, same size or larger, then she will suggest a bronchoscopy with lymph node removal for biopsy.

2.  After the scan, another pulmonary function test

3.  Decide a course of treatment. 

She was actually quite…

Enough is Enough

Everyday Sacred was the name of a book I read quite a long time ago, by Sue Bender.  It's a book that chronicles her quest for joyful wisdom and simplicity.  Who couldn't use a little joyful wisdom? To discover this, she lived with some Monks and observed their life.

She goes on to tell this story about how, each morning, the Monks leave the Monastery with a single bowl in hand.  They walk up and down the streets of the village and whatever is placed in their bowl, becomes their nourishment for the day. Enough.

She goes on to make the following analogy.

"The first bowl is inverted, upside down, so that nothing can go into it. Anything poured into this bowl spills off. The second bowl is right-side up, but stained and cracked and filled with debris. Anything put into this bowl gets polluted by the residue or leaks out through the cracks. The third bowl is clean. Without cracks or holes, this bowl represents a state of mind, ready to receive and hold whatever is poured int…

The Width and Length of Being Human

"I don't want to get to the end of my life and find that I just lived the length of it.  I want to have lived the width of it as well." Diane Ackerman

We know the length of life...when it's over, it's over but what about the width?

How far does that extend? Farther than the eye can see or just far enough?

The quote above was long gone and forgotten about until I saw it, as I walked passed my daughter's picture that hung in the corridor at the hospital Cancer Care Center.   I remembered it is one of her favorites.

Today, Sam left his mark in the room where we spent many a long days with Shelbie.   Today, he started his first official treatment and it will happen every week for the remaining length of his life.  That sounds overwhelming, and it is.

Things went well today.  He had no reactions or negative side effects.  His temperature is a little wonky tonight and he's been sleeping most of the day, but that is all to be expected.

It's been a big week o…


I missed Juneteenth.  June 19th, 1865, the abolition of slavery in Texas.

I planned to acknowledge it and celebrate. I circled it on the calendar, wrote it at the top of my planner, the week of.  I've honestly never thought about Juneteenth before, in my whole life, but for some reason, this year, it was important to me. I was going to gather my kids and it was going to be an epic celebration.

It didn't happen.  I missed it altogether.

I wanted it to be our day of emancipation from Dyskeratosis Congenita.  The disease that has produced nothing but scarcity for us.  The chronic reminders that change what could become of each day.  It would be wrong to suggest that we have no say in this...because we do, and we use to live our best life but then I got tired and forgot against the current of disease and we became enslaved to a different way of living, of thinking or despairing.

Ironically, I was in my own head on the 19th, giving up the day to fight a losing battle with insurance…

I accidentally grew up

Without any effort at all, one month folds into the next and summer arrives, gives way to Fall, the leaves disappear and a new year is upon us and in these wrinkles of time, I am nearly 50 years old.  
It came quite by surprise.  There were no inspirational talks I can thank for getting me to this nigh on chronological milestone.  No quotes hanging on the walls of my room, reminding me to grow and grow up. Perhaps you could say... 
"It was one of the best days of my life, a day during which I lived my life and didn't think about my life at all."  Jonathan Safran Foer.
So, it just happened.  I grew up, quite by accident.  I grew into this middle aged woman with silvery strands of white hair and I thought the other day, how very strange this is.  I scarcely remember how I did this, yet here I am.
As I wring my hands and pace the floor in anticipation of what is next, I read the scraps and memos of scrawled out notes, reminding me to be happy.  Find Joy in the Journey, one …

The Anticipation

It's like Christmas around here as we wait for insurance to determine the fate of Sam...

It's not exactly like Christmas because there are no Jingle Bells, no gifts, no treats but there is a sort of anxiety and sleeplessness that has ruined the last few nights.  His counts are just so low!  He isn't running a fever so that is our only saving grace at this point but the second he does, they will put him in the hospital. For now, we have come to an agreement that Sam will go on an outpatient basis to get transfusions and Neupogen- the drug to coax his marrow to push out a few good cells.

 I couldn't figure out why our insurance denied the treatment Sam needed last weekend until the Specialty Pharmacy called yesterday.

They apologized for not being able to get anything authorized because the only way insurance would cover it, is if it was done inpatient.  She kept talking about Remicade as the drug in question.  I finally questioned her on why they were trying to authoriz…

Father's Day and Such

Today has been a big day.  Well, of course it's Father's Day and that's big!

 I'm grateful for good parents; a great father.  I'm grateful my dad has been faithful, wise and loving.  He has set an example for me and my kids of faith and charity.  Growing up, he was always helping others and doing wonderful things the money and talents he has been blessed with and without a doubt, his family was on the receiving end of this kindness.  I'm mostly happy that my kids have such a man to look up to.

And these days...good men are hard to come by.

I'm also grateful for my sons who are growing up to be faithful, good men.  They struggle but they hang in there.

Today, also marked the 13th anniversary of my divorce.  It's so hard to believe that I have been doing this single mom gig for over a decade.  13 years ago, I had no hope for surviving my singleness.  I had no hope that I could amount to anything let alone take care of my family.   I often thought, back th…

A Bridge Too Far

I drove home from the surgeon's last night thinking about the boundaries of life.  What they are, where they sit and how we determine them.

I have to have surgery on July 2. I don't think it's going to be a big deal but it's surgery nevertheless.   He will make a 1 1/2" incision on the top of my hand and take out a solid mass that has grown in the joint of my wrist and under the tendons.  It's creating constant pain, swelling and loss of function in my hand.  I asked him if there was any other possible thing I could do to avoid this but there isn't.  It's been a bother for almost two years.  For two weeks, it will be immobilized and for another 4-6 weeks there will be some "difficult" nerve and tendon pain as I retrain my hand to work again. 

As we visited about this procedure, I asked him if I could do it awake?

It was shocking to hear myself say that...He is going to open up my hand, dig around the tendons and all those nerves and I am req…

Dips and Drops

5 years ago, next month, the kids and I headed to Florida for Sam's Make A Wish.  His wish was to ride the largest roller coaster in the United States.  I'm not exactly sure where that is but they sent him to 5 of the top amusement parks in Florida so he could ride every single roller coaster.  
I do not like roller coasters.  I can't imagine anything worse than riding a roller coaster so I had some concerns about this trip.  One, I had to drive us around Florida.  Two, I didn't want to ruin Sam's Wish by watching from the side.  Once we got to the first park, Universal Studios, and I had the Minions ride under my belt...I noticed that there were small signs at the entrances that described the ride; if there were drops, and how high, spinning, dips, loops...after reading about the terror, you could then decide if you wanted to engage in the paralyzing anxiety that accompanies the ride. 
The only problem with this, was that because Sam was a Wish kid, we all got to …

Enduring...Moving On

Last night, while Sam and his girlfriend built a blanket fort for his little sister, (my Wasband's little 5 year old who I babysit on occasion...and she calls me Kat...I know, it seems weird but I try to be a peacemaker so my kids can build strong roots with her and she's it's a win!)   I went through my old drafts folder from all the things I've written that never made it to the blog.

 This is a journal entry from a year ago that I archived but somehow it still fits.

"I could endure, but I could not move on." She wrote.

This, from a girl whose entire family died in a carbon monoxide accident while she was serving a mission for our church. She doesn't write often on her blog anymore but this struck me as feeling familiar. 

Am I in the same place?

It's hard to see any progress in the day to day.  I like to think I'm going somewhere but I also think I often sit on a throne of lies and denial.  Enduring implies a positive thing; to bea…

Living in the meantime

We are in a holding pattern of sorts around here.  Not much is going on in terms of kids and health. 

Some of Shelbie's bone marrow reports are back things are looking pretty good.  I have a lot of things to sort out on her this week.  Her plasma came up for re-approval from the insurance company and that has been held up for the past three weeks.  Still no word on approval and I gave her the last transfusion this past week.  That means, we have nothing for this week unless it all gets sorted out tomorrow or Tuesday.  I'm a little nervous. 

Somehow, her appointment with our Oncologist got cancelled and made with the Neuro Immunologist that follows her epilepsy and also co-manages the CVID.  She may be the one that ends up making the call on whether they try the two chemo medications to slow the growth of the granulomas.  That appointment is in two weeks.

We have one more week before we re-run labs on Sam to see if his counts, specifically his red cells are still declining, sta…

Enjoy these pictures...

I feel like everything has been so hard and depressing here on the blog...mostly because life has been hard and also depressing.  
In all the hospital stays and trips to Utah, we did manage to do a few fun things to get a break from the heaviness.  Instead of 4 pages of words, here are a few pictures I manage to capture that didn't involve a hospital.

Before we knew Sam was in critical condition and would end up inpatient, we went to the coolest museum in downtown Salt Lake called the Leonardo.  It was a hands on kind of place.  We LOVE museums of all kinds.  If I could live and breathe at the Museum of Modern Art in New York, that would be almost Heaven to me. Anyways...the Leonardo was fun for the few short minutes it lasted.