The power of a label, jumping to the wrong conclusion

When you know that you are sick, but all the tests come back negative; it's a very frustrating place to live.  But our modern medical system doesn't allow for diagnosis unknown.  Every interaction between a patient and a provider requires a procedure code and a diagnosis.  Thus doctors are required to work under a presumptive diagnosis.  Within 30 seconds, most doctors have labeled a patient.

And it's these instant labels that are the problem.  If a doctor labels a patient as a drug-seeker, he may never ask the questions that say why she is in so much pain.   My balance problems were written off as a drug interaction, until I had insanely overactive reactions to a vestibular eye motion provocation test.  When I was in the emergency room with chest pain and trouble breathing, I'm sure the instant diagnosis was panic attack.  Luckily the doctors followed the heart attack protocol and my second cardiac enzyme test came back positively.  With a bedside echocardiogram, they found significant heart failure and I was in the hospital for 2 days of observations and testing.  It would have been an easy miss, and if I went home and assumed the shortness of breath as asthma; steroids and albuterol would probably have further trashed my heart.

Now all of us use these instant labels in real life.  Instant classification is encoded deep within our brains.  Its learning to push yourself past these labels and identify the real person inside that can be a challenge. The black teens gathered on a street corners are presumed to be discussing drugs and not calculus. A teenager playing with smoke bombs and explosives will either be classified as scientific prodigy or a troublemaker depending on their looks and history.

And all too often a teacher will classify a student almost instantly, and will shape their interactions with the student based on this label.  Your brother was a slacker who never worked hard, so I don't expect you to succeed.  Your sister was a star student, I'm going to give you the benefit of the doubt and really push you to your best.

And if these labels are based on the color of your skin, your ethnic heritage, your financial background or even your looks, you are going to deal with these labels in every interaction with a new individual.  Having to wash off that label with every interaction in your life is exhausting.

If you are a white male who graduated from a fancy ivy league college, you're assumed to be a competent, intelligent individual until proven otherwise.  If you are a black student at the same fancy college, it's presumed you didn't really earn your place.  If you are an attractive woman in the workplace, it's assumed that you are eye-candy and not a professional.  If you are obese, you are labeled as lazy and stupid.

It's these labels that make an individual's path through life either a stroll down the boardwalk, or an uphill climb.  And while I have a lot of the positive checkmarks, even overcoming one stereotypical label can open your eyes to the lives of those stuck with labels that can't erase.

So take time to get to know someone new in your life.  Whether it's at church, at work, at school or a neighbor; learn who the person is and move past that label you stuck on their chest.

I'm good at what I do. PAY ME!

Somehow it has become the norm in this society to ask individuals to do their work for free or a very minimal wage.  Often the temptation of "exposure" is supposed to substitute for the fact that you don't make any money.  We no longer have to live on love, now we have to live on exposure.

If you work as a waitress, the restaurant will pay you $3/hr and expose you to restaurant patrons who are expected to pay for your services as well as their food.
If you are a college student, you are expected by Federal Financial Aid formulas to make several thousand dollars each summer to contribute to your education.  Future employers however, want to see that you've worked as an unpaid intern for the experience and exposure to the real workplace.

Colleges feed the adjunct system with the idea that people will teach for almost nothing for the exposure of leading a class which will be good for their resume.

Minimum wage is set at a level that is half of the living wage with the idea that this is a "training wage" that individuals will get for a short period of time until they have exposure to the workplace.

Freelance writers are expected to write for free for exposure of their work to a larger audience.

All of this exposure is a lot closer to the victimization of pornography, then a legitimate on-ramp to the professional world.   Just like a lead in XXX films is unlikely to lead to life as a main-stream movie star, taking any of these positions puts the taint of desperation on your resume.

Right now I'm living in that gulf between minimum wage and a living wage.  This is a horrible place to be, especially when I consider myself a talented professional.  

Lets STOP expecting people to work for free for exposure.  And shame on bio-online for calling dnlee a whore for asking how much she would be paid for writing a guest post.  Maybe that word jumped to mind so fast since they knew they were the pimps trying to peddle exposure instead of money.

#iammargaretmary and choosing not to be an adjunct

Before Dad got sick, I was interviewing to be a tenured-track professor in Chemistry.  I'm glad I didn't get any of the jobs because I wouldn't have been an effective teacher and a supportive daughter during the cancer.

But one thing I really did learn when I was interviewing around the country was the dependence on adjuncts, even in small, remote, liberal arts colleges.  I also talked to women who were mourning that they waited to have children until they got the brass ring of tenure.

If we really want to know why women and minorities are under-represented in the privileged world of the tenured professor, we only need to look at how many drop off the elitist path to greatness.

Graduate school programs are relatively easy to enter.  Graduate universities depend on students to teach the masses and to run the research in their labs. Graduate students are usually earning poverty level wages, while doing 60 hours or more per week in the lab and classroom, then going home to grade papers.  While having your lab students finish the PhD is an important checkmark in the tenure track file, students are cheap and the 3-4 year PhD program often extends to 8-10 years.  These aren't high school drop-outs, but students who have already earned a Masters degree and our doing the high level research that fills the academic journals.  And living in poverty.  Coming from a white, suburban background, my parents were able to help with medical and vehicle expenses and subsidize my time in grad school.  I gave up a good paying professional job, and lost over $40,000/year in opportunity costs.  But that's ok, when you graduate you'll get to be that professor right?  For someone without family support, living in poverty while your friends from college are earning a good income is a hard choice.  Of course, since the recession, more students are fleeing to graduate school rather than facing unemployment.  Too bad when they graduate they face: The Adjunct

Adjuncts get paid $1500-$4000 per course and our part time teachers at colleges, thus not eligible for any type of benefits.  Many adjuncts work at 3 or more schools to put together a living salary.  Adjuncts perform the same basic role as teaching assistants, but work at community colleges and other colleges without a pool of grad students to teach.  At many community colleges 70-80% of courses are taught by these part-time no benefit positions.  Many adjuncts begin by thinking, if I adjunct for a year or two I'll be a sure thing for the opening when Prof X retires in a few years.

But adjuncts age badly, the freeway flyer is not a true colleague, she doesn't have time for leisurely office chats, long lunches or Friday happy hour.  She probably doesn't even have a desk, let alone an office.  She arrives a few minutes before class and leaves immediately after.  She has other classes to teach off campus, no time or resources for new research and probably a parking problem.  And that tired, frazzled adjunct can't compete with the shiny, new PhDs with fresh publications and time to craft and practice a fancy job talk.

So the small department has a pool of permanent adjuncts that may get a formal interview, but probably will be forced to smile and play nice with the bright new star that the college hired for the new tenure-track line.  Or even more likely, all of the candidates will be sent a letter to thank them for their time, but the university has decided not to fill the tenure-track position at the time.  But if you are interested 6 more courses are now available and they are looking for adjuncts.

Rest In Peace: Henry Edmunds Davis

It's been a long seven months, but Dad passed away at 3:45 pm today.

Lots of things haven't processed through my mind yet.  The mechanics of death are whirring away, the hospice nurse pronounced at 4:15 pm.  The funeral home has removed the body.  Hospice disposed of the medication, the medical equipment company will clear out the stuff tomorrow.  Cremation will occur in a couple of days after the coroner has signed off on all the paperwork.  We'll have a memorial service in Mid-May when we are ready to celebrate his life.

We don't want lots of flowers in the house, plant some native wildflowers in your yard.  If you want to make a donation please consider:

UUMAC: The Unitarian Summer Camp that dad was president of when his tumor was first diagnosed 5 years ago.  This camp has been an extended church family for both my parents.  http://www.uumac.org/wordpress/scholarship-donations/

Musella Foundation: VirtualTrials.com is an important advocate for brain cancer research and helped support the research that gave Dad a great quality of life for most of the past 5 years.  http://www.virtualtrials.com/

Close to Home ... A hospice murder/suicide

Yesterday something far too easy for me to imagine happened less then 2 miles from my home:

http://www.mcall.com/news/breaking/mc-allentown-lehigh-valley-hospital-murder-suicide-20130319,0,2694606.story

A couple who had been married for 64 years, husband killed his wife who was being forced out of inpatient hospice after only a week.  He then shot himself.  She was basically blind, paralyzed and in terrible pain.  She was in hospice, but she had temporarily stabilized.  Inpatient hospice doesn't like to house patients for more then 10 days.  So he was told he had to find someplace else or bring her home.  He felt he had no choice but to end everything for both of them.

And here we hit a lot of personal experience.  When Dad was first diagnosed with his Brain Cancer, he spent almost a month in ICU, finally received his surgery after we initiated a transfer to a university hospital, and then returned to a nearby rehabilitation hospital.  One week later he was home, and 2 weeks after that he was discharged from outpatient physical therapy.  He was then able to do chemo and radiation on an outpatient basis from home.

When this tumor recurred last August, we envisioned a similar plan without the long initial stay in the ICU.  Unfortunately, Dad wasn't getting better.  And even more unfortunately, everyone we met that was involved in "discharge planning" was less then useless.  After tracking down a social worker who was probably covering 25-50 patients, you were thrown some brochures, a bunch of forms with tons of detailed financial questions, and oh yeah, medicare says we aren't allowed to make any real recommendations.  The bewildered family (if there even is one) is forced to try and wade through the difference between assisted living, transitional living, acute rehabilitation, long term rehabilitation, sub-acute rehabilitation, nursing home care, hospice, home health aide, visiting nursing, private duty nursing etc.  All those terms give me a headache now, let alone when you want a safe (and affordable) place for your dad to be, TOMORROW.  Me and mom did the hasty tour of a dozen local nursing homes with no notice in two days.  I wouldn't make any major decision that quickly, but you want me to send my dad someplace with a 15 minute tour and whatever information I can gather on-line.  Oh yeah, and this is with the denial and heartache of someone that is this sick to begin with.  Really bad idea.

When we first realized that dad was this sick, and not likely to get better; we brought up the idea of hospice. And I must admit that my family thought of hospice as a place.  Someplace that dad could go, that would be similar but not a hospital.  Some PLACE where he could get the care he needed to ease his last days.  What we discovered was that the place in hospice is almost always the home.  And home hospice care is limited in scope to providing a small amount of daily assistance, not the round the clock that a truly helpless person needs.  While inpatient hospice certainly exists; it is for an acute transition or respite care (up to 5 days).  It isn't a place where someone can ease away their last few months in care and comfort.  And while medicare language discusses physical therapy in a hospice context.  You are quickly told that this is strictly about safety, how to use a hoyer-lift, pick up falls, etc. and not at all about the comfort or self-care of the sick individual.

And like so much else in healthcare in this country, a dedicated caregiver is assumed.  Someone who can step in and provide the round the clock care needed to send someone, that might otherwise be in intensive care, home.  Even without life-saving intervention, there is still a great deal of comfort care that goes into daily patient care.  And when we were investing nursing homes, we found out that the average patient even at a good home, receives less then 1 hour of attention a day.  That's one hour, to feed, dress, bathe, change clothes/bedding/diapers, dispense medications, move/rotate the patient to prevent bedsores, and provide comfort and companionship to a frequently very confused individual.  In home hospice, we also get about this hour of day from an aide and/or nurse.  And while these have been great, there is still 23 hours where the family is taking care of the patient.  Dad doesn't usually wait for a nurse to fill a diaper, throw up, break into a fever, need feeding/water/blankets moved, etc. etc etc.  Most of this has fallen to my mother.  Who is providing all of this care, while not always sleeping well herself, and DEALING WITH THE FACT THAT HER HUSBAND IS DYING.

I can really sympathize with this husband in ending the pain and suffering for him and his wife.  And I really hate a health care system that can leave someone feeling that it's their only option.

To be continued ...

It's been hard to put my feelings into writing lately.  Dad will wake up for a day and be pretty alert, and then slip back into mono-syllable responses or 30 hours straight of sleeping.  Every day he seems to have slipped a little farther away, but he's still here.

That scene from Monty Python's Holy Grail keeps going through my head:
http://www.youtube.com/watch?v=kllZsaNGtVg

This is the one of the death cart coming around to collect corpses during the Bubonic Plague.  Actor 1 brings in a body and the body starts saying I'm not yet, I feel happy, I'm getting better, Look I can walk ...  The first actor then keeps saying he'll be dead soon and it's almost over and is there anything he can do.  And then the death cart guy smacks him over the head and moves on.

I'm the creep that's trying to send my dad to his grave before he's ready to go.  Dad is the half-alive man assisting that he's ready to get up and dance.

We live in such a throwaway society.  It feels like I'm trying to throw away my own father right now.  The GUILT is insane.  Yet this is exactly the life he never wanted to live.  After the first diagnosis 4+ years ago, he and mom both made detailed living wills.  He specifically signed a DNR allowing the discontinuing of nourishment if he was stuck in a body that was useless and losing mental capacity.  He's there now.  And he's been there for a while.  But he still has lucid moments, and his only enjoyment these days seems to come from eating.  I'm not going to take that away.

And ever since the surgery last September, there haven't been any heroic life-saving measures.  But he has a healthy 66 year old heart and lungs behind a brain sending out all kinds of crossed signals.  He's slipping away but it's a very painful fade-to-black rather then the overly scripted deaths we've all seen too many times on TV.

And maybe that's my real problem.  Death is the end of the story, and we all know how long the book or movie is supposed to be.  Problems are supposed to be solved at the end of an hour show, maybe an occasional cliff-hanger to carry us over to the new season.  But real life isn't neat and tidy.  Real life is awkward, and doesn't have XX pages left until the end of the story.

I've always lived my life in fast forward.  Looking ahead to the next milestone and not really stopping to smell the flowers.  Right now, I need to live in the moment and enjoy the lucid moments with my father.  While these aren't the memories I would have chosen as the end of his story, they are the reality.  And I need to face it.  Real life is hard sometimes.

Welcome to the Future

It's not everyday that you get blown away by something that screams "Welcome to the Future", but seeing this on Kickstarter today just blew my mind:

http://www.kickstarter.com/projects/1351910088/3doodler-the-worlds-first-3d-printing-pen

This is literally letting someone draw in the air and have their doodles extruded as 3D plastic.  

Now my free-form art would probably look a lot like what is pictured here, but for an artist to be able to sketch off the paper is just insane.  Not to mention creating "sketches" of graphs or molecules or even a face.  

Since I work in a museum, we are always trying to have that wow moment.  That time when you push a kid to see into the future and see themselves doing the impossible.  That moment that will bring teachers, parents, kids etc back.  And once this tool becomes available, I can just picture that spark in a kids eyes when they can sign there name in mid-air and take it home with them.  That's a wow.  And so is this project.

And I'm obviously not the only one to think so.  Day 1 of their kickstarter, their 30 day goal was $30,000.  In the last 20 minutes they've gone from $960K to $974K.  They need to come up with some multi-million dollar stretch goals.  Can I suggest a museum-ready super-durable version :)

Evolution and Religion

As known science geek in my circle of friends, I'll occasionally be asked my opinion on something science-y.  This is my response to someone asking about a creationist curriculum to teach high school science:

Let me start by saying that while I believe Heavenly Father created the Earth and all things in it, I do NOT believe in a 6000 year old earth.

 I've seen how God can span many orders of magnitude from atoms at 10^-12 meters to galaxies at 10^12 meters and don't see why we need to put him in the human mindset that can't handle more then about 1000 without switching reference frames.

 My belief is that like a good agile programmer, God created life in steps and reused his code (DNA and genes) as he perfected each of his creations. The spirit of man is from the pre-existent spirits and it is this breath of life given to the earliest human that turned it from a walking ape into a true human being. Thus I can NOT recommend a science series that sticks to a 6000 year old earth and ignores even the basics of what sexual reproduction does for the diversity of species (one small example from the first chapter of the Bio book). The experiments and language look good, but with such a restrictive lens to bias the writing, it won't provide an understanding to go to college or understand the world around us as described in the scientific literature.

 Here's an overview of the First Presidency's statements about evolution: http://biology.byu.edu/DepartmentInfo/EvolutionandtheOriginofMan.aspx

And this especially captures my views:

ENCYCLOPEDIA OF MORMONISM

EVOLUTION

The position of the Church on the origin of man was published by the First Presidency in 1909 and stated again by a different First Presidency in 1925:

The Church of Jesus Christ of Latter-day Saints, basing its belief on divine revelation, ancient and modern, declares man to be the direct and lineal offspring of Deity.... Man is the child of God, formed in the divine image and endowed with divine attributes (see Appendix, "Doctrinal Expositions of the First Presidency").

The scriptures tell why man was created, but they do not tell how, though the Lord has promised that he will tell that when he comes again (D&C 101:32-33). In 1931, when there was intense discussion on the issue of organic evolution, the First Presidency of the Church, then consisting of Presidents Heber J. Grant, Anthony W. Ivins, and Charles W. Nibley, addressed all of the General Authorities of the Church on the matter, and concluded,

Upon the fundamental doctrines of the Church we are all agreed. Our mission is to bear the message of the restored gospel to the world. Leave geology, biology, archaeology, and anthropology, no one of which has to do with the salvation of the soul of mankind, to scientific research, while we magnify our calling in the realm of the Church....

Upon one thing we should all be able to agree, namely, that Presidents Joseph F. Smith, John R. Winder, and Anthon H. Lund were right when they said: "Adam is the primal parent of our race" [First Presidency Minutes, April 7, 1931].

WILLIAM E. EVENSON

(Encyclopedia of Mormonism, Vol.2)

Reprinted with permission of Macmillan Publishing Company from Encyclopedia of Mormonism, edited by Daniel H. Ludlow. Volume 2, page 478. Copyright 1992 by Macmillan Publishing Company, a division of Macmillan, Inc.

Uncanny Valley and Bodies Revealed

I've had a lot of parents worried about how their children will react to the corpses in Bodies Revealed.  And a lot of adults were creeped out by the idea of what they were looking at.  But in the 5 months that I've been facilitating Bodies Revealed, I've only had a small handful of visitors freak out and have to leave.  

So in this society where death is so hidden from the average person, and most of my visitors had probably never seen a corpse that hadn't been embalmed and prepared, why didn't they freak out? (Well ok, these bodies were embalmed and prepared too, but they definitely don't look like they are sleeping).

I think it has a lot to do with the concept of the uncanny valley that is usually discussed in animation and robotics.  Basically humans will anthropomorphize almost anything and except a lot of very non-human faces and read them easily.  But if a face starts to look TOO real we will suddenly and unconciously become a very harsh critic of what we are seeing.

So as an example think of a very exaggerated feature animation like Japanese Anime or an emotion chart:

The crazy eyes don't strike us as creepy, and we have very little trouble reading the emotions in the exaggeration. 

Yet overly realistic baby dolls, robots, masks or animation can just seem odd or somehow threatening:

We've been primed by evolution to reject signs of disease and read others emotions.  So when the emotions don't read correctly, all of our warning bells go off that this person is dangerous, or lying or otherwise just wrong.  This is the same kind of feeling a lot of people get with clowns, mimes, and heavily overdone make-up.  We can see the face underneath, but the emotions and contrast are all wrong.

If we were to see just the skin on the body, we would probably all be freaking out.  Bodies not moving is a classic evolutionary get out of town warning.  He's dead, whatever killed him is probably nearby.  But by changing the appearance of the body and especially the face by removing the skin and presenting muscle and bone there is enough unreality to create distance.  And then if you make another step out to the circulatory system, we can really appreciate the intricacy without tripping up our inner sense of creepiness.  And we have thus distanced ourselves from the humanity of the donors to study and appreciate the amazing structures of the body.

So Bodies Revealed did it right, keeping enough features to remind us of the humanity of the donors, but changing enough of the facial features to leave us out of the uncanny valley discomfort zone.  It's a good reminder that studying sciences and psychology across disciplines can provide lessons in unexpected places.  

The Slippery Slope, The End Begins

Dad is losing control of his body temperature.  It's swinging back and forth from cold to fever and back again.

This is an end stage signal that his body is shutting down.   So is the fact that despite large doses of steroids he is no longer interested in eating or drinking.  He's getting hard to wake up, and quickly falls back asleep.  The end is very near.  

Ed and Lanna are coming down from Maine, me and Robert are cutting back to bare bones crowd control at Da Vinci.  And we are watching and waiting for the end.  I've never watched anyone die.  I really wish it wasn't my father.  But I know that my heavenly father loves me and has a plan for all of our lives.  And I know that Dad will be resurrected to a perfect body in the next world, and will wait patiently for his wife who better stick around for many years.

To anyone checking in, my dad is Henry Davis, Ph.D.  longtime owner/operator of the Weed Doctor in central NJ.  He was a long-term Unitarian Universalist, active in the Princeton, Washington Crossing and Bethlehem Unitarian Churches and the UUMAC community.  The end is very near, but the love he is leaving behind will be long remembered.

Educating Visitors and Myself in Bodies Revealed

For the first time in a long while, I can truly say that I love my job.  Like any job there are downsides, but getting to engage guests in conversations about our exhibits and science in general has brought out wonderful new parts of my personality.  In starting this blog, I'm hoping to expand on interesting conversations that start in the museum and engage the cyber-world as well.

Since October, DaVinci Science Center has been hosting Bodies Revealed. (See http://body.discoverlehighvalley.com/bodies-revealed/ and http://www.bodiesrevealed.com/ for an official explanation of the exhibit, the opinions on this blog are my own and not those of DaVinci or Premier or anyone else).  Since I work assisting guests and school groups at DSC, I have spend a LOT of time in this exhibit in the last few months.  The very same months that Dad has moved from a rehab hospital to a nursing facility to home hospice.

When I first thought about this exhibit coming with Dad in his current state, I didn't think I'd be able to deal with it.  How could I work with corpses everyday when my dad was dying?  But when the exhibit was setting up, I was in the closed museum for training and got to spend a little time with the bodies as they were in transit, and felt like I could handle it.  Then an exhibit went up that featured the Thalamus and the facial nerves.  This is the part of the brain that was mostly removed on his right side and led to the hemi-paralysis and other symptoms.  Right here I was looking at the part of a brain that was causing so much trouble.  And it was like everything clicked for me.  Seeing this in 3D, right there was so different from looking at drawings or following a doctors hand waving.  It was looking at me, and I stared at it for a few minutes.  I went back and looked at it over and over again.  And by understanding where it was, seeing how deep they were working when they removed that cancer.  It really brought home what a tremendous surgery this was to even attempt.  And why damage was so hard to overcome.  Looking at the neighboring full body that is cut away to reveal half the brain and cut down to the spinal cord, showed me how protected this part of the brain was.  

Suddenly, I could understand what happened to Dad in a whole new way.  And maybe turn around some of the tragedy of the situation by being able to talk about the brain from a much different perspective.  Now I have probably shared too much information with you here on my blog, and with some of the visitors.  But I've been able to talk about the thalamus as the central switchboard, and explain how this lets you integrate the information coming in from your senses and pass information on movement back out to the body.  And I've had a lot of mini therapy sessions as I've talked out various parts of my caregiving life as I spoke with strangers about their stories.

And now if we zoom out, all of my struggles as a caregiver have given me new appreciation of all of the bodies in our exhibit.  And it's also given me a lot of empathy for all of the visitors who want to share their own struggles.  One of the first things many visitors focus on is the organs or bones that have caused them trouble in their life.  I've heard stories of overcoming many types of cancer, broken bones, various surgeries and chronic pain and I've been able to understand their struggles and connect on an emotional level.  

For someone who lives somewhere on the range of high functioning Autism to Just Plain Geek, emotions are not something I'm good at.  I'm not good at recognizing them, processing them, or conversing about them.  I like facts and rules.  But Bodies Revealed has given me a space to talk about this miraculous thing that we all have called a human body.  To marvel at the intricacies while I discuss the wonders at even smaller levels.  And to make conversations about what goes wrong, a normal part of the exhibit experience.  And while I will NEVER be a doctor, it's made me a better caregiver.  And if even a small fraction of those that go through this exhibit take better care of their own bodies and their loved ones then the exhibit is worth it.  And if even a few people can better understand the health troubles that have occurred in the past, or will occur in their future then it's a wonderful thing.

We can't all take a gross anatomy class with a human body dissection, and many of us don't want to face dissecting even a frog or earthworm, let alone a cat.  And a cat isn't a much better model of a human being then an oversimplified plastic model.  And while computer simulations of anatomy are getting MUCH better, then are still 2D representations of the complex body.  The reality is so much deeper and more complex, that I'm deeply grateful to those that donated their bodies and those that did the work to make them so approachable for so many.  

So if you live near Allentown, PA; come see Bodies Revealed before it takes off to Davenport, Iowa in a few weeks.  But if you do, try not to come on a Saturday or Sunday afternoon unless you really like large crowds.  Insider tip is weekday afternoons, or as early as possible on the weekend.

Emerging from a Chrysalis

When trying to think of an appropriate geeky metaphor for my life, the chrysalis of a butterfly came to mind.

To an outside observer the chrysalis (cocoon) of the butterfly looks dead and static.  But it's a time of great internal change before a rebirth.

As a Latter Day Saint (Mormon), I've experienced baptism by water.  This is a process of fully immersing yourself in the waters of the font, and coming out cleansed of your past and your sins.  It's an important symbol of the break from the past, and starting anew as a convert.  But conversion is a much longer process then this ritual event.  It's a lifelong process for most of us.

The basics of conversion, or maybe just being a better human, is shifting your focus from yourself to your love ones and then outwards.  It is so easy when you are sick to turn inwards.  It's also easy to shift your focal point to a loved one.  It can be a lot harder to help the needy stranger when your inner two year old wants what it wants NOW. 

An interesting example of this happened when dad was first hospitalized with this relapse.  As expected, my attention was very focused on my parents.  But a call from the Bishop (the LDS lay-leader of the local congregation) asked if we could help a woman who was escaping an abusive situation.  Now my first response was a big NO.  We have too much to worry about right now.  But then we decided to help her.  And it actually turned out to be a very good thing to re-ground both me and my husband.  

Despite everything that had gone on with dad, and money, and jobs et al.  We were still blessed.  I don't know where my path will lead me.  The last few years have been hard.  And in a lot of ways I have been living in a cocoon, separated from the world.  Now its time to show the world the beautiful person I've become.  And follow the path that Heavenly Father lays before me.

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.