A long strange trip

The ICU waiting room is a surreal place.  No one really wants to be there but there always seems to be several families stuck.  Sometimes it's just shift-change or a larger family taking turns to visit their l loved ones.  But often it's procedures.  Something serious enough to need everyone out of the way, but not a trip to the operating room.  Loved ones are dying or recovering and there is nothing you can do but wait and pray.  Seconds can pass like hours and days and weeks can blur past.  Families come and go and you know nothing about the rest of their stories.  Just the passing conversation that marked a turning point in that families saga.  Occasionally it's the joy of a successful transplant.  Often death came quickly.  And then there are the slow steps. 

The first time dad was in ICU he lingered too long as surgery was endlessly postponed for a couple days.  One faint comment that it was our choice to find another hospital was the only time transferring was even mentioned.  I finally pulled out of the chaos enough to find another surgeon on my own.  After surgery, dad slipped pretty seamlessly into a standard treatment plan.  He flied through rehab and did ok through radiation and chemotherapy.

A grim prognosis had settled over dad, but he was surviving and songs like "I hope you get the chance to live like you were dying" rang true.  Dad's horizon had shifted, but he could live.

Six months later the cancer came back.  Right on schedule.  It was too small to cut and not impinging on healthy brain.  An RV vacation was planned to enjoy what could be the last healthy months.  Dad was home and we had lots of research to do.  An online glioblastoma multiforme support group had a lot of anecdotal reports of success with vaccine therapies.  Pennsylvania had two clinical trials of this type.  His previous tumor specimen was tested and he didn't have the right markers for trial A, but was a good fit for trial B.  The RV trip was routed through Pittsburgh.  Dad enrolled in the protocol and traveled through the month long washout period after his last round of chemo.  He returned for a six hour day on a pharesis machine to filter out certain white blood cells.  Lab work by hidden grad students followed and dad returned for a shot.  Mom was trained to administer an immune boosting antigen twice a week, and life resumed.  Three months later the tumor had shrank.  At six months it was just scar tissue.

The trial was our miracle.  He was patient 20.  For the next three years there were occasionally shadows on the MRIs, and numerous trips to Pittsburgh, but he was healthy and living a normal life.  MRI day was always stressful, but life went on.  Until it didn't.

After another round the country RV adventure, dad was having trouble driving across town.  A trip to the eye doctor for new get glasses ended in disaster.  A total left side vision cut.  It must be the tumor returning.  That was Friday, an MRI was already scheduled for Monday.  After an anxious day of work I wanted to see those images.   The tumor was obvious.  We started calling doctors.  One was in Japan, one in South Africa and the other on vacation in an unknown location.  Dad started stumbling.  We finally got high dose oral steroids from a partner physician.  The next day he had a routine oncology appointment.  He fell down four times getting ready.  We packed his bag and he went straight from that appointment to ICU.  In many ways that was the day he stopped being the father I admired and became a dying, confused cancer patient.