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Showing posts from September, 2015

In Theory

Today was all about theories.   That's just a positive way to say, still no answers, just a bunch of theories.  However, it was another step today.

We started out at our family doc.  Our PA left the practice we have been going to for ages and moved to another town.  We love this particular PA.  Let's call him Andy!  He's been gone about a month.  I couldn't stand to lose yet another doctor on our team so with a little hunting around, I tracked him down in a tiny town North of us.  He is in the smallest, red neck town but I don't care.  He is kind and very smart.

I told him my diabetes theory and asked him if I was going crazy to think there might be a connection.  He felt like it was a possibility as well, especially when he went through all the symptoms of diabetes.  Spencer answered yes to every single symptom!  Things I didn't even know he was experiencing.  The thing about Spencer is, I call him and ask how he is doing and he always says, 'great'  …

Spencer's Home

Spencer came home tonight, in fact, he just barely walked in the door.  He is getting some last minute homework done so I am sneaking in a post.

It's been an emotional couple of days.

He came home because he is meeting with the Pulmonologist tomorrow to get his pulmonary function test results and chest x-rays.  I think I have been traumatized by pulmonology visits this year and that might have something to do with my slight unraveling.   It's never been good news and considering they had to put Spencer on oxygen just to finish the test, makes me even more nervous.

We are also meeting with another doctor to discuss the possibility of diabetes and to get a referral to a motility specialist. So, it's going to be a long, hard day tomorrow.

When I start feeling like this, I just wonder to myself...Why don't I just quit?  Quit taking them to find out what is wrong.  Why not just let them live and whatever happens, happens?

For me, it comes back to my quest in w…


Dieter F. Uchtdorf asked if we are resentfully enduring or living a meaningful life.

This is a big question.  Without a doubt, there are moments, even days when I feel like I am resentfully enduring but I think with time and age and experience...I have figured out how to be less resentful and live with more meaning.  Its all part of my evolution I guess.

I have thought about this a lot today.  I look at my kids and they are surely one of the best examples I have of living a meaningful life.

Shelbie works her little heart out.  She has started a business right out of high school and it has grown into something she is proud of.  She could just as easily sit around feeling sick and sorry for herself.  Earlier this week, she can home late from a photo shoot and ran in the house to grab something and on her way out said, "I'll be back!  I'm running to the store but first, I saw a homeless guy at the gas station, he needs some money so I'm going to give him some money- he…

The experience of being

Today, as I sat in a darkened hospital room, listening to Shelbie keep the rhythm of hospital life with her quiet, sleepy breaths, I thought about life.

My life.  The big life I find myself living every day.  And though I find it hard to be gentle and forgiving of the times I am weak in my faith and overcome with fear...boy, I've experienced it all; every feeling you can imagine this wild life can toss up and even feelings that words have yet to describe.   If I were to die tonight, I would have no regrets...Whatever the world and those around deem me to be, whatever judgments they want to measure me against, it makes no difference.  I did my level best.

I have experienced the depths of heartache and grief but deeper still a joy that can transcend even the most chaotic of days.

I have experienced what it's like to feel everything at once and nothing at all.

I have experienced connection and empathy.

I have experienced great and suffocating loneliness.

I have experienced God&#…

Grace upon Grace

Today has been a much better day!  Whew...

So...what changed?

Not really anything.  I mean, the problems are still glaring and scary.

But...I changed my attitude.  Late last night, I emailed Spencer a pep talk that we both needed to hear.
I sent him this quote by Jorge Klebingat

Accept trials, setbacks, and “surprises” as part of your mortal experience. Remember that you are here to be proved and tested, “to see if [you] will do all things whatsoever the Lord [your] God shall command [you]” (Abraham 3:25)—and may I just add, “under all circumstances.” Millions of your brothers and sisters have been or are being thus tested, so why would you be exempt? Some trials come through your own disobedience or negligence. Other trials come because of the negligence of others or simply because this is a fallen world. When these trials come, the adversary’s minions begin broadcasting that you did something wrong, that this is a punishment, a sign that Heavenly Father does not love you. Ignore th…

It's a plan...I guess

It's been an interesting day with emotions all over the map!  

I called our Gastroenterologist first thing this morning.  He returned my call at 9:30am.  I really feel strongly that Spencer needs a feeding tube.  He is trying so hard to eat but it's almost impossible to eat enough.  The lower his weight slips, the more difficult it becomes.  He is burning at least 700 calories every day at work.  His organs need at least 1200 calories to keep functioning properly so right there, he needs about 1900 calories just to maintain the low weight that he is at. He needs to gain weight!  The doc said he needs to be eating more like 4000 calories a day.   Let's not forget that whatever he puts in his mouth is out of his body one way or another in 10 minutes or less.

Here's the kicker...the doc wants him on a liquid diet.  4000 calories of liquid and dairy makes him doubled over in pain so milkshakes are out.  He wants 6 days of this and then we will reassess where his weight i…

Don't Panic

For the past three hours, my mantra has become...Don't Panic!

Spencer called me tonight around 10 pm after I got home from a long, long day working, to tell me that he has lost more weight.

1.5 weeks ago, he left home weighing a whopping 114lbs.
Saturday, he weighed 110 lbs.
Monday, he weighed barely 109 lbs...right after he ate a 2lb he probably weighed more like 107.  Ugh.

He is becoming alarmed.  I was alarmed back at 119 lbs. Now, I'm just trying not to panic.

At this point, I think it would be stupid for him not to get a feeding tube.  There comes a point when it becomes impossible to eat enough calories to stabilize let alone gain 30 pounds back.  We are just about at that point.

He will need to eat at least 2500 calories a day to maintain his weight.  2500 calories of real food, not a 2 lb burrito from a fast food joint that probably doesn't even contain meat, just a bunch of fillers.  Doing a continuous feeding through the night will boost his calo…

I could care less

Something magical happens in your 40's  or maybe it happens when life is too hectic or filled with chronic problems, or maybe it happens because we finally start to  grow up and'get it'.  Whatever 'it' is.

I have found that I could care less sometimes...

I care less about deadlines.

I care less about gossip.

I care less about judging others...myself...God.

I care less about your business.

I care less about being happy.

I care less about the mean people in my world.

I care less about the passive aggressive people in my world.

I care less about what you think of me.

I care less about what I should be doing.

I care less about what I could be doing.

I care less about a clean house, a tidy yard.

I care less about being my best.

In all of my caring less...there is room to care more.

I care more about doing what I can whether it meets a deadline or not.

I care more about the quiet battles of people around me.

I care more about just trying to understand myself, and give ot…

This journey

I have spent an awful lot of time in the car today driving back and forth from the hospital and doctor's which gives me a lot of time to think.

First of all...we lost another sweet friend from Cardio Pulmonary Rehab this week.   There was a lady there who was so taken with Shelbie.  They hit it off right away.  Her name is Marty.  They would do their exercises together and talk about everything under the sun.  The past couple of months, Marty has been gone doing family reunions and get togethers with her kids and sisters.

About three weeks ago, she ended up in the hospital with some heart arrhythmia.  She came to rehab the Monday after her weekend episode and talked about how much it scared her and she needed to work harder at rehab.  She hasn't been back since then and we've missed a lot because of all our stuff.
This past Sunday, Shelbie said to me, "I think maybe Marty died."  I didn't think so, she didn't seem that sick.  She acted as if things wer…

Every Thing

So, we are trying to find our new normal now.  Spencer has been gone a week and while it's still weird and wild, we are adjusting.  I'm not so sure he is but I guess that is to be expected.

Today was his first day of school.  One teacher didn't show up and another seemed to have no clue what she was teaching and he's on a waiting list for a class he really needs and the teacher said he wouldn't decide until next week.  If he doesn't get that class, then he will probably have to defer until January because he won't get his Pell Grant without 12 credits.  There are no other classes available that he can take.

Sometimes, I wonder why everything has to be hard.  I get that some things have to be difficult so you learn patience and whatever.  When every single thing you try is always hard, all the gets really frustrating.

In my head, I get it.  My heart is another story.  I'm really ready for something easy.  Hmmmm, seems I've been looking a…

When You've Said it all...

"What do you write about when you feel like you've said it all?"                                                                   -Jensen Parrish
Sometimes, I feel like that as well.  Especially lately.   What can I say that hasn't been said before.

Life is hard.
Life is good.
Life is crazy.
Life is a journey.

We carry on.
We stumble on.
We hope on.
We despair.

We do it all.  We do it together.  We journey on in this crazy, hard but good life.   We aren't always at our best or graceful as we stumble on with the load of cares we carry.  It could be worse...but it could be better.  It's a little of this and a little of that. An eternal round of line upon line, live and learn.

The Heart of a Mother

As a mother, we sure are called upon to do some hard things!

As I look back over the last little while, I am struck by all the hard things I have had to do and continue to do.  I am especially surprised that I let my son leave for two years.  I didn't realize, during the two years, how much of an impact it was having on me.  When he got home, I felt this incredible release of anxious energy.  I may have even suffered a little PTSD without realizing it because now that he is going to school, I am having waves of anxiety about him being gone...again!   I hate it.

As our saga continues...Spencer was accepted to school but due to a bad housing shortage for students, we have been unable to secure a place for him to live.  He also didn't have the job he was counting on.  

He's been so patient and working his faith that things would turn out but it was also weighing heavily on him.  After doing a lot of networking, coming up with a plan, we headed down to Salt Lake on Friday to …

We've all gone mad

There is a major element of 'crazy' when your entire life is up in the air.  A kind of crazy you really can't do anything about and well...that's just crazy!

The entire situation with Spencer is all encompassing.  I didn't realize how much time it would actually consume.  Aside from his health issues, we are dealing with life issues.  He's been trying to get into school, which he actually was accepted.  So, now it's been trying to get registered at the 11th hour with all of the prereq. classes required are filled, find housing and the job he was 'expecting', 'promised', whatever that was, is looking more and more like maybe it won't happen.  Without a job, or a place to live how can school materialize.  Classes start in 5 days!!  5 days people!  We have 5 days to find a dwelling in another State, get an apartment outfitted, beg all the teachers to let him add the credits, figure out how to pay for an apartment, school etc.  find a job...…

Happy Birthday Spencer!

Today is the big 21 for Spencer!  21 years has flown by!

          Spencer 2 months old                                            Spencer and I July 29, 2015

So, funny story...quite some time ago, I think Spencer was probably about 8 or 9 years old, someone had convinced me to take the kids to this alternative health 'doctor'.  Back then, when we were still in the early stages of disease, people offered up all sorts of ideas that would cure my kids and we bought into most of them.

We drank the rare berry juice, took the nasty herbs mixed with dirt and let them sit under our tongue, ( just kidding, it only tasted like dirt)  We slept on magnets, wore magnets, lived and breathed magnets.  We soaked in oils, drank oils,  We did it all.  This particular one though...was the most extreme.

To this day, I don't know really know what she was trying to accomplish but she had this long, crystal wand.  She would have the kids strapped into this chair and then wave the wand in their…

The War With What Is

Each year, I feel like I am led to someone who inspires me so much, their words and their thoughts seem to get me through the hard times.  It's as if they have been divinely appointed to help me through the hard times.

The year I lost my job, it was The Course in Miracles that I had spent a full 6 months studying.  I was so intrigued with this book.  With each inspiring podcast I listened to, I learned so much more about my faith.  Later that year, Shelbie ended up having chemotherapy and the things I had previously learned, helped us get through that.

Last year, it was Brene Brown and her theory on owning your story, learning to be vulnerable.

This year, along with inspiring messages from the leaders of my church, I am so interested in the work of Byron Katie.  Her messages on suffering and trials are timely for me.  She speaks volumes about how the suffering we feel comes from our own thoughts and our own resistance.  When I heard her speak the statement...The war with what is.…

This means war

It has been a hard week but for some reason, yesterday was about the hardest day. I felt like I was going to 'snap' all day.  It was as if every single person I have ever associated with needed something from me.  My phone was going non stop, the kids needed me, and a project I offered to 'help' out with and thought it would be an hour, turned into 8 hours.  Needless to say, I am terribly behind and feel thin as I spread myself across all the needs to fill.

We are three days into the diet and it is going okay but it is definitely far from better.  The truth is nothing is really going to help.  It only becomes the difference between horrid pain and significant pain and discomfort.

Last night, I could feel a major breakdown coming.  It has just been too much for too long.  I don't understand what is happening to my kids.  We were fine one minute and not the next...or so it seems.

But...then I remembered that each step we take, each trial we get through has prepared u…

Some results...

I can not even believe how completely insane life got around here in the blink of an eye.

I have two sick kids and one horribly depressed kid who is also sick but doesn't know it.  I mean, he isn't in too much discomfort so he carries on, none the wiser.

Results are starting to trickle in.

First, bone marrow biopsies.  Only preliminary results are back, more are pending

Shelbie:  Remained stable with no signs of leukemia or myelodysplasia.  Of course she was neutropenic, leukopenic and had no iron stores but that is pretty typical for her.

Spencer:  For the most part, is stable.  He too is neutropenic and he had some cells called hematagones.  They can actually become fairly serious but for now, they have classified it as slightly increased, not significantly increased so, I guess they aren't very worried.

Samuel:  Not stable.  He lost around 5% of his cellularity so his marrow is very, very empty.  He too was neutropenic, leukopenic and he had something very strange cal…