About the fear of loss

"Can you get on a flight today?  Your dad is being transferred to UW Madison." 

It's barely 8am on June 22, 2016.

There's times in your life where you start to dread the phone ringing.  You live in fear that it's going to be the call to tell you that someone you love is in the hospital, that their condition deteriorated, or in the worst cases, someone has passed away.

I lost my first grandma my senior year of high school.  He was in 80's, had some health issues over the years and had been in the hospital for pneumonia.  It wasn't entirely a surprise.

His wife was next many years later.  She had been dealing with a variety of health issues and most recently intestinal blockages/tumors.  She was in her 80's as well.

Next was my my maternal grandpa.  He had survived leukemia many years prior but it returned.  It coupled with fluid in the lungs (I don't believe it was necessarily pneumonia) and an aneuyerism that they couldn't operate on due to the fluid.  He was in good health until the day he entered the hospital.  While letting the cat in from outside, her leash got tangled around his feet and he fell backwards.  Suspicious is that it dislodged the anueryism.  I was flying home that weekend in June to surprise my grandparents.  I received a call the night before, my mom in tears, that my grandpa was being airlifted to UW Madison and it wasn't looking good - could I get an earlier flight?  I did, but I didn't arrive in time.  He was in his 70's.

Now, my dad.  He's just turned 63 in April.  That man was so rarely sick it was impressive.  One could chalk that up to the farmer lifestyle - hard work and lots of sunshine and fresh air.  He went in to have his physical to get his CDL renewed and the Dr noted high levels of protein in his urine.  After having it checked out and many doctor visits later, he was diagnosed with Primary Amyloidosis.  It's a very rare disease, affecting ~4000 a year, where the body creates an excess of light chain proteins and the body can't rid itself of them quickly enough.  They tend to collect in the kidneys and heart and can cause severe complications if not caught & treated.  PA is not curable, but it is usually manageable with early diagnosis.  Prognosis is usually around a decade or more.  Treatment is usually oral or IV chemo.  My dad started on oral chemo but reacted badly so they stopped the first treatment.  During this whole process his blood pressure was insanely low - registering often in the 60/30 range. 

With his appetite gone and sleeping so often as a result of the low BP, his weight plummeted (he weighs less than me!).  I saw him over Memorial Day and while he generally acted in good spirits (he was good at putting a brave face, maybe that's where I get it from).  Shortly after I returned home I received word that they were in the hospital.  Pneumonia.  Given the nadir (low point) of the new chemo treatment, this is when his immune system would be the most shot so getting sick wasn't a terrible surprise.  They started him on antibiotics and a blood pressure medicine which actually got his BP up over 100 for the first time in ages. They transferred him to the ICU floor a few days after being admitted so they could give him a certain medicine that can only be provided in certain, certified areas.  I spoke him on Father's Day.  Truthfully he didn't sound great but they had been keeping him on a bipap mask to try and move fluid out of his lungs and that dries out your mouth/throat which makes you sound kind of shitty.  

Things were sounding decent.  They put in a port a cath (relatively common for cancer patients) so they could pump additional anitbiotics and fluids without stabbing him so many times and overloading his veins.  We knew he'd be there a few weeks.  Then on Jun 22, shortly after I arrived to work, I got the call.  The call everyone dreads.

Come home.  Now.

I arrived in Madison shortly after 8pm on Wed night.  I couldn't believe the man lying in that bed was my dad.  Wires, tubes, sensors everywhere.  He was only moderately coherent - he could open his eyes some and gesture with his right hand, but he couldn't form words.  I'm pretty sure his growling at me was a token of his disappointment that I was there - because if I was there on a Wed night - something must be wrong.  Shortly after I arrived they inserted a breathing tube so they would be able to support his breathing without the mask, and also give them some ability to see into the lungs and other organs.  They also started him on continuous dialysis to try and maintain/lower the toxin level in his blood and help the kidneys.

Multi organ failure.  Not good.

We met with the doctors on Thursday morning.  They had received some test results and scan results and wanted to discuss where we were.  I don't think I've ever attending a more somber meeting.  His organs weren't doing well.  He still had pneumonia.  They suspected a fungal infection - they weren't sure which one.  Oh, and the CT scan had revealed multiple mini strokes and a bleed in his brain.  Prognosis was extremely grim.

How do you go from being relatively active, involved in numerous activities, living a live built on hard work, dirt, sunshine and fresh air to barely conscious in the TLC unit at UW Madison?  At 63.

Even if they could identify the fungus and treat it we're left with kidney failure, greatly reduced lung function, ineffective bone marrow and whatever stroke effects.  Oh yeah, and he still has the amyloidosis.  The answer was unfortunately clear even if no one wanted to state it out loud.  We made the decision to continue to treat and throw every medical advance possible at him.  I believe in miracles.

The Friday afternoon meeting went much of the same as Thursday - but with a noted decrease in lung function and a decline in mental function.  We were losing him.  A miracle at this point was leaving the hospital.  It wasn't even having a functional life, it was just leaving the hospital.

I became terrified to look at him.  It was hard to see him just there, but to know that his story was closing...I hated it.  He didn't deserve it.  I wanted my dad for longer.  Why him?  Why were we being tortured?  All the things that we didn't do or I blew off for "next time".  He'll never look over his fields again.  He'll never get on a plane with my mom again for a trip with their friends again.  He'll never call me kid again. 

It's at this time you start to regret, a lot.  The phone calls you didn't make.  The trips you didn't take.  The things you didn't say.  The presents you didn't send because you'd give him something next time.  Next time...