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 fine, or make my kids believe that they will be fine and that even though we’re together, it’s fine.  The truth can be stark, and grieving can bite and fester, especially when it has yet to produce a corpse.  Questions balance ever so gingerly on the very edge of ‘Fine’ and threaten to clear the smoke and break the mirrors strategically placed; a hologram of that quiet porch swing that exists in a made-up, wishful, world from long ago.

What if?

Could Be…

Maybe…

Then what?  

And they all trail off into the shameful world of fear, guilt, dread and disappointment, unanswered and insecure and that quiet little world is bigger than you and wider than me and nothing can touch it, and sense can not be found and this isn’t the world where I want to dwell and the very question…”How are things going?” becomes the worst collection of words I could ever hear.  I would rather carve my fingernails into an eternal chalkboard of grit than face what we face…

Every. Single. Day.

But, here we are and here I sit and everything teeters on an axis of tests that could mean any number of things and the world of never enough beats upon my door and the bridge between here and the end of suffering is burning bright.

The PET scans did not come back with any hope or promise.  Shelbie’s bottom line is that is was “PET Positive” Many new tumors have grown with SUV scores well above normal and into the range considered cancer and when I read that, I couldn’t help but consider the night sweats, the fevers for weeks now, the fatigue, the pain the lymph nodes that wax and wane.  I could go into detail, but why?  Our doctor is out of the office for a few days so the official word has yet to be delivered.  So we sit and stew…but it’s fine

.

Spencer was discovered to have unidentified growths on his parathyroid and thyroid.  His liver and thoracic aorta were “hot” as they say in PET scan terms.   Without further investigation, who can say what we are dealing with?  It’s an eternal game of hide and seek.  So, we’ll wait…but it’s fine.

Two more unplanned trips to the hospital for Samuel this week.  The buffet of trouble included C- Difficile, a ruthless, and antibiotic resistant intestinal bacteria that runs rampant without swift and aggressive treatment, and/or, a bowel obstruction called an Intussusception.  The symptoms are similar and he’s already had to deal with each of these options before.  Neither is good. The winner was C-Difficile.   One would think that with a diagnosis such as that, treatment could begin without a hitch.  But no.  

My insurance has denied the medication.  Even if they did accept it, there are no pharmacies in the area with any supply of the drug he needs for this strain.   A ten-day supply or 20 pills is just under $1000.00.  My pharmacy took pity on me with a cash discount which is sweet, but laughable, bringing my bill to $700.  But what difference does that make? The doctor needs him to take 4 pills a day for 10 days…our bill will be double if insurance doesn’t bend.  There are no pills to be bought this week…Next Wednesday, they will arrive. 

So, my neutropenic son, the one not mounting an immune response of any kind to these bacteria, whose kidneys just got hammered by a virus, will be medication free until at least Wednesday.  So, we wait and I fight with the almighty insurance company, who surely knows more than our doctor…but it’s fine. 

I left the pharmacy with the last straw hanging off my shoulders, beaten and so very, very tired but we needed milk and bread and milk and bread seemed like such very important things in that moment of disgrace and dread.   The store was filled with students back from Spring Break, but in the crowd was Sam’s best friend’s mom.  One of the sweetest human beings you could meet.  She always asks about Sam whenever our paths cross.  Her son is serving a mission and he has a heart of gold like his parents.  I tried to interrupt my tears so she wouldn’t suspect my upset and I did but my frustrations spilled out in a sugary way…”But it’s okay.  It will all work out.  It always does.” I said.  I thought that ended our interaction. 

After more errands and a heavy heart, I stumbled my way back home to find on my door step from this sweet sister a loving card and $1000.00.  “We had some extra money"…she said, “We want to help you pay for Samuel’s medication.”

There are no words.  There is no way I can find any adequate method of gratitude to this family and I’m not even sure how to begin.   I feel humbled and blessed beyond measure and hopefully, I won’t need the full amount…Hopefully, God can pull a miracle and the insurance company with do the right thing, and I can return this generous investment made with pure love. 

I am tired and I am sad and I am worried…but I’m fine.