Off-ramp

Six years ago, I attended a panel discussion on lagging female professional achievement featuring then Senator Hillary Rodham Clinton.  She spoke about the many off-ramps we all experience in life and the lack of on-ramps to resume a professional career afterwards.  Little did I know that she was forecasting the next phase of my life.

Unfortunately this wasn't the happy arrival of one or more infants and balancing motherhood and a career. I got sick with one of those hard to diagnose, invisible, but all too debilitating illnesses.  Over the course of two years, I started getting sicker until I didn't feel safe driving, walking across campus, and finally walking down the hall.  Doctors seemed to write me off when it didn't fit neatly on their lists of treatments and diagnostic codes.  My student insurance left plenty of medical bills, and my research was going nowhere fast.  I eventually cut my losses and headed home.  I had a telecommuting research post-doc lined up and figured it would pay the bills while I wrote my dissertation and found an effective treatment or cure.

Then my dad went to the emergency room with an apparent stroke.  It was a bleeding brain tumor, and he was transferred to ICU with brain surgery scheduled in two days.  A month later, he was still in the ICU after a series of clotting problems and my research skills were put to use finding a neurosurgeon who would operate and didn't think he would die on the table.  I did, he lived and entered standard procedure treatment.  He was given eighteen months, and my new job and dissertation had fallen away.  Major offramp.

After helping my dad through radiation and chemotherapy, I needed to get back to work. Dad was on disability, mom had an early retirement she hadn't planned as a sole income, and I needed to push through.  My dad had just had brain surgery and was walking within a week, what was my excuse?

As a quick job I applied for an SAT tutoring position and they asked if I could get a 95th percentile on the MCAT.  I studied hard for two weeks, took a proctored practice exam and made the grade.  Unfortunately, I almost passed out during training and had to leave.  I didn't want to leave my parents with dad's prognosis, and found the impossible assistant professor position in my field, willing to consider an ABD and not only commutable but literally across the street.  The year before I flew across the country, then drove hours to interview.  This time I conducted the standard phone interview while looking at the campus and than walked to the in person.  But like the tutoring, I couldn't hide my symptoms through a six hour interview day.  I finally got a good diagnosis the next week, and started a semi-effective drug regime.

Having destroyed my dream job and still unable to do my research (which had been actively triggering migraines and associated neurological symptoms).  And still being physically and geographically limited, I changed career paths and settled on an imperfect fit with some very interesting work going on in the next department that I was assured I could grow into.  Dream department disappeared, hours of daily driving commutes pushed my physical limits and I was eventually fired for the increasingly obvious misfit.

So now I and too many million of my closest friends were on unemployment.  I picked up a lot more volunteer shifts at the local science center, and soon was hired for a part time position at a minimal wage.  I loved the job, and hoped a full time position would open up before unemployment ran out.  It didn't, the cancer is back with a vengeance.  And I'm more confused then ever on my next step, except that helping him through hospice outranks everything else.

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.

Working Overtime while Dad is dying

My dad has been living with Brain Cancer for 4.5 years.  He's been dying with Brain Cancer since he had a stroke during the tumor removal surgery in September, 2012.  

Living with Brain Cancer, and probably any other fatal disease is about learning and trying different treatment protocols, following the latest research and aggressively advocating for yourself to live life to its fullest.  It's about taking that vacation you always dreamed of during the good months when everything is working; and living in fear and dread that IT will come back.  A shadow on an MRI strikes fear into your heart.  A clean MRI brings a smile and extends that hope.  Everything can be OK for today, we'll worry about tomorrow later.

Dying with a disease means facing the inevitable.  Too much is lost to ever make right.  This isn't a stable new normal that you can embrace and enjoy, but it's trying to maintain some control while sliding down a rocky slope.  You often feel like one wrong move will start an avalanche that will destroy you, but you can't climb up and you can't find a way around.  

In dad's case, dying slowly also means the need for a lot of assistance in the daily details of life.  Dad's biggest wish right now is to sit down on a toilet to do his business and then take a long, hot shower.  Unfortunately he uses his diaper and a sponge bath, not at all the same.  It also means that a lot of the time in the nursing home and now in the home are caring for the basic needs.  Bringing him food, cleaning up the food that he spilled everywhere, and then cleaning up the diapers.  

Only once in the five weeks that he's been home so far have we used his hoyer lift and his wheelchair to bring him out to eat at the table.  It's a lot of hard work, and ended up being very painful for him and for us as caregivers.  But it was a moment of dignity for him, and we'll try to do the rearrangement and minor carpentry to do this again.  Eating around his bedside just isn't the same.  But even taking the time to prepare and eat a meal as a family seems like too much work a midst the chaos.  

And maybe that's the real problem right now.  Being home with Dad feels like work.  It feels like a full time job of get me this, and clean this, and make that.  It's loads of extra laundry every day.  And stinky diapers that turn my stomach and lingering odors that do the same.  It's not getting to spend time with the lucid, wonderful father that I remember.   But the demanding over-sized infant that he's become.  If it's that much work to be home, and my job is short-staffed and offering part-timers temporary overtime.  Is it that wrong to work overtime while my dad is dying?  Of course it is.  But I'm doing it anyway, because the creditors keep calling, the bills have stacked up, and there is no way to get a professional job when I'm this distracted.  I'm sure the guilt will linger far after the paychecks have been spent.