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Showing posts from 2018

It's A Wrap

One minute, you have a beautiful, 2016 Nissan Altima and in a split second event, you don't.   The car has been deemed a complete loss so that's the end of that. 

Now that I have had time to process it, I guess it really was the best outcome for us.  This car was a lease and that was working out fine when Shelbie drove it because she used it just around town, so she was able to keep the miles low and in check.  When Spencer started driving it, he racked up the miles driving from Provo to Salt Lake for weekly hospital visits and then all around the Salt Lake Valley for work, so by the time we returned the car a year from now, we would have been well over the allotted miles.  Someone had scraped up her bumper in a parking lot and we were waiting to fix that until just before we returned the car to the lease company, as well as replace the windshield...so, in the end, this saved us in some huge fees and penalties, even after I pay the deductible.

Spencer's injuries will mend …

Just Because

Have you ever wondered what it would be like if car insurance companies behaved the same way health insurance companies do?  Think about it, we get better treatment for our cars than our bodies.  How is this even possible?

Unfortunately, just because we've been living on easy street the past, oh, I don't how long, months at least, it was time for a little hiccup a little trial of sorts.  We've been spoiled, just coasting and such.  Things have been going so well, it's to be expected that we had to have something go wrong.  Everyone has something right?  Why should we be exempt?  We are such slackers. I've just been waiting for the shoe to drop.

Spencer was in a significant accident tonight...in Shelbie's car.  Air bags deployed, hyper extending his fingers on both hands, possibly breaking one thumb at least,  whip lash, and impact to his pace maker again!! The last thing the cardiologist said after the snowmobile accident...no more accidents!

He called me at 5 …

I'm fine.

In my parked car this afternoon, I sat alone and listened for the birds who finally found their way home via Spring.Shelbie is off in the woods somewhere, capturing memories for a young, growing family so it seemed a perfect moment to be still. If you know me, you’ll know I don’t sit and I’m never still. I don’t have time to let a quiet moment break into the vaulted thoughts of worry and fear that I have so systematically shelved, in my very worn out head.In so many ways, I’ve been deeply detached from the impact of my unique circumstances of testing.
I always imagined a simple life for myself.  A quiet life.  A husband, a few kids, a family tethered securely to a well worn porch swing where everything was right with my little unnoticed, simple life. Sitting here, as the birds chatter back and forth, I am cursed to be alone, with nothing to do. I am profoundly aware that I am tired of living life on the edge of ‘We will be fine’, because I just don’t know how much longer I can be fin…

Meh!

Today was another big day.   I had an early morning appointment to get some ultrasounds of my joints and I also received a big ole steroid shot in my hips.  It wasn't good news.  There's just no way to sugar coat this.  Every. Single. Joint in both of my hands is deteriorating.  I have severe synovial hypertophy.  It's in my hands and my left wrist and my right shoulder.  I don't know exactly what is causing it or how they will treat it until the end of June...My doctor is leaving the country for 6 weeks!  
She did say that I need to stop overusing my hands or I will be facing complete disability in a very short amount of time.  
UGH>...Everything I do involves my hands...from playing the organ every week at the temple or church, to my jobs, cake decorating, flower arranging...everything.  I'm a little worried and upset with the news but of course, as is customary, trying to keep it under wraps so I don't upset the kids.
She said it's so severe that I h…

The waiting game

This has been an epic week...no trips to Salt Lake.

 It feels weird actually.  I'm itching for a long road trip when I can leave late at night, after having only a few short hours of sleep and chew caffeinated  gum like there's no tomorrow. 

Just kidding...I'm sick of my car.

No PET scan results in yet.  I imagine by next week. 

This week is not without a barrage of medical stuff to do.  Monday, I spent over two hours at the hospital getting all the blood work, scans and x-rays I needed that I was shamed out of getting last week at the Rheumatologist's office.  This morning, I get to have an injection in my back that, fingers crossed, will improve the quality of my life some.  I can't even imagine what it would feel like to be pain free, even if for one day.  Because my kidneys are screwed up, I've been avoiding Ibuprofen or Tylenol so life has been extra miserable in the pain department.

Also today, Shelbie gets her splint off and we get to see how horrible he…

Miracles and Mayhem

Today was a day of lessons learned. 

An adventure with God.

A culmination of every effort of faith I have ever gathered.

We left our hotel in a rush early this morning, got stuck in massive traffic and not just morning traffic in Salt Lake but there was some crazy person driving the wrong way down the freeway so things were moving extra slow in an effort to keep everyone safe.  It was pouring rain, as if we were in the middle of a car wash.  It took a solid hour to get from our hotel to the hospital which normally would have been a 20 minute drive. 

There was no sitting around once we arrived and they whisked Spencer off for his two hour PET scan.  Shelbie, Sam and I went back to the car with our plan to show up in the ER at the University Hospital so that they would call a Nephrologist on call and Sam could get the help his kidneys need. 

When we got to the car, I suggested we stop for a minute to pray.  I prayed that I would know the steps I needed to take in order to get Sam the ca…

Stuff you can't make up

I know most of my life seems made up because really...it has become a bit ridiculous but today was the tops in crazy.

I've been waffling about canceling my appointment today to see my Rheumatologist.  I've felt like it's a waste of time and resources, especially since office protocol means I don't even get to see the doctor until the end of JUNE!!  Yep.  I saw a PA today and he just does an assessment, listens to me whine and complain but he isn't allowed to do anything other than just that, even though I'm quite certain he could do more intellectually.   The second appointment is with a different PA and they do more examines and then a few weeks later, you see the doctor. 

This is probably a wonderful way of doing things if all you deal with is arthritis or whatever.  I don't have time for this kind of circus side show, but, I didn't cancel.  In fact, they called and asked if I could come in 2 hours earlier and I said, "If I come in and change my …

Ball of Stress

Stress kills...I'm convinced of that more than ever.  That means, at the rate things are going, I have about 3 weeks left of life. 

It's been a stressful few days. 

I have been trying so hard, harder than I have ever tried before to just leave things in God's hands.  That's hard work.  I'm telling you.  Hard. Work.

It's always a struggle to balance the act of a gracious surrender with the overwhelming feelings of anxiety and worry.  I don't do this well, but I try. 

I have often joked that if jumping to conclusions was an Olympic Sport, I will have earned me a few gold medals.   This whole kidney failure, bone marrow biopsy, small bowel cancer theory, broken bones and the whole 9 yards is wearing on me.   I've tried to do what I can to get Sam an appointment with a Nephrologist in Utah but I have been running into incompetent people, forgetful people and people who won't break protocol.  It's so frustrating.

I finally called our family doc again…

Surgery and Kidney Updates

Shelbie had her surgery on Friday.  Everything went well.

Unfortunately, the surgeon was unable to save the joints in her finger and he ended up having to fuse it.  She went too long without the bone in the right place and he didn't have enough healthy tissue to make a pin work.  So, from top to bottom of the second joint, is a screw. 

He said it was tricky because her fingers are so tiny and he used the smallest screw they had and it just barely worked.  She was a little traumatized because she woke up during the procedure to the sound of the drill.  When they took me back to the recovery room she was sobbing and pretty upset that she had woken up and that she won't be able to bend her finger anymore.  It seems like such an inconsequential body part but the pinky really does account for most of your grip.

She has been handling the pain very well!! I've been so surprised in fact.  She is having to take some pain meds but for the most part, it's totally manageable.  To…

All Things Difficult

I've been MIA around here.  My life just got exponentially more difficult and worrisome. 

Sunday, Sam seemed really tired but okay.   In the late afternoon, he came to me and said he was having some extreme pain.  We had a house full of cousins and friends so I gave him some Advil and figured things would get better.  They didn't and he ended up in the ER Sunday/Monday.  IT was a bit of a joke in the ER.  We got our favored doc actually but he was not on his game...too many Easter Eggs I guess.  He didn't do an exam, didn't order blood work, did nothing but shrug us off.  So, it was a wasted visit.

After just a couple of hours of sleep,  I was able to get him to a Urologist in the city.  We rushed to get there in time only to find out he wasn't in our Network.  In fact, there are no Urologists in our Network within 2 hours of here but I knew I had no choice so that will be coming 100% out of pocket.   They diagnosed him with Epididymitis, and an infection.  They pu…

Questionable Prayers

Sometimes the hardest part of blogging is coming up with the title. 

It's been a whirlwind of a week around here; difficult at best.

The short story is that my kidneys took a turn for the worst on Wednesday which sent me to the urgent care for the morning.  It has become evident that I can't fix this like I thought I would be able to.  I did, however, drop my cholesterol by 30 points and my blood pressure is way down.  I haven't seen it this low in over a year.   So, I am on Prednisone, the drug of the Devil until I can get in to the Nephrologist again and I know I won't be able to avoid a kidney biopsy. 

Of course, that means I will be waiting a full month before they can fit me in.  I also made an appointment to see my Rheumatologist to get my Lupus under control but that's a two week wait just to see the PA.  Then another two weeks with another visit with the PA and then another two weeks when you finally get to see the doctor who will then discuss the course o…

No Words

Sometimes, there are no words to describe what happens in our life from moment to moment.

We had an unexpected turn of events on Friday.  Huntsman Cancer Center called and their PET scanner has broken.  The parts to repair it are coming from Germany so the kid's PET scans have been postponed a couple of weeks. 

As soon as I got the call, I remembered how annoyed and upset I got when Sam's pacemaker surgery was postponed a week because of a scheduling glitch.  When I found out in that week's time that the pacemaker they were going to use in him was recalled, I was so glad that Heaven orchestrated that glitch for us.

So, I have handled this setback with a little more finesse.  One good thing is that they were able to get Shelbie and Spencer's scans rescheduled back to back, so that will save me one trip!  This morning, I got the results of a 24 hour urine test Spence had to do.  It checks for the protein that carcinoma cells can produce and it was negative.  This doesn&…

Fine Lines and Broad Strokes

Life is interesting and complex, difficult and rich. 
Life is a piece of art.
Life is made up of fine lines or broad strokes. 
Every decision we make, rests upon a fine line. Each choice rests upon the line we drew before. Within each decision, no matter how small,is a permutation of consequences and experiences; for good or for bad. Each one of these fine lines weaves together a beautiful life of rich detail, an embellishment of experiences and a depth of light and dark.  Like a finished portrait, we can see the extent of our mortality with all the joy and turmoil that makes it all so stunning, beautiful, necessary and revered.  In fact, along the way, the fine lines are the art of story...your story.  My story.  A story of defining moments, the whys that came from the whats...all the fine lines. 

But then, we experience the broad strokes of judgement and all the beauty, inherent in the fine lines, become smeared and blurred.  Detail is lost and gives way to assumptions.  That'…

Surgery next

Well, shocker...

Shelbie is going for hand surgery on April 6th.  One more thing to add to our list of appointments crashing in over the next two weeks. What a mess her finger is.  The hand surgeon isn't sure he can save her finger at this point since so much time has passed and it's been healing wrong since the break.

From the x-rays they took this morning, the bone at the top of her joint is teetering on the very edge of her joint below, not even remotely close to being lined up.  There has been such a deterioration in the cartilage as well.  On the x-ray, it looks pretty grim.  It's still red and swollen and he's concerned about that also.  In addition to the broken bone, he is concerned that the ligaments and tendons down her finger are twisted, stretched out and that is adding to the complicated situation.

The plan is to open up her finger, set and pin the bone back on top of the joint where it belongs and fix the ligaments.  If there isn't enough cartilage to…

The Power to Change

PET scans are scheduled for the kids.  I think this has been an act of God to get this pushed through insurance in just two business days.  I was hoping to get them on the same day but that won't happen, so, looks like I'll be making the pilgrimage to Salt Lake, 3 times over 7 days.  Ugh.  I have no words.  If I didn't have a nightly job to attend to, I would just camp out on Spencer's floor at his apartment but I will have to be home each night to work. 

PET scans are very specialized tests to begin with.  A radioactive sugar is injected into the veins and any cancer lights up "hot".  Spencer's PET scan is even more specialized and all of the area hospitals in Salt Lake share the amount of radioactive sugar prepared so the amount he needs for his test is limited.  It's all pretty interesting, albeit, terrifying as well.

Such is life...it's chronic. 

Anyways, this isn't what I wanted to talk about today. 

Yesterday at church, we discussed in o…

Famous Last Words

Too bad I have this bad habit of speaking too soon!  I wasn't too worried about our appointments this week...

I wasn't expecting any earth shattering news at Hematology/Oncology yesterday.  I knew we might be looking at some further testing for Shelbie but I thought the boys would sail through the appointment without incident.  The last bone marrow biopsy the kids had was the Fall of 2016.  We are suppose to do them yearly but considering 2017 was a shambles in other areas of their health, I didn't think it would hurt to hold off for a bit.  We've actually had one of the healthiest winters.  It's been at least 8 months since our last Pneumonia.

Sam passed all his tests with flying colors...well, flying colors as in, he's okay.  His counts are trending down from when we started with our Salt Lake Team three years ago.  His white count is only 2.3 which is pretty low but I have seen him lower.  The cells he does have, look good microscopically.  We have decided t…

Life

Life is happening fast around here, as usual.  It's been so nice having a week off from hospitals and doctors for the kids, but all good things must come to an end.  We start up again tomorrow with another trip South and Oncology Clinic.

Spencer has been working on finding his new normal and making plans for his new business venture.  He has decided to free lance as a Director of Production and Advertising.   Last Fall, before he got his job, he and a friend approached the Lexus dealership to ask if they could use a car to make an advertisement and if they liked the advertisement, they would offer them the finished video at a discount.    Spencer got his full time job shortly after and the Lexus video was put on hold.  Last week, he was able to finish it with all his extra time.  With his permission, I get to post it here! 

I'm so proud of him.  In just 18 months, through Salmonella, Heart Failure, Liver Problems, never ending GI troubles, he taught himself the art of video an…