November 29, 2013

guilt

I remember when my wife was pregnant with him, people would ask us, "do you want a boy or girl?"  Both of our response was the same.  It never changed.  It never wavered.  "We just want him or her to be born healthy."
     But you don't think of the diseases that lie in wait.  Those that are not apparent from birth.  Those that are part genetic, part environmental.  A ticking time bomb waiting to go off when the wrong set of circumstances start an abnormal chain of events in the brain resulting in catastrophic and horrendous consequences.  Suicidal thoughts that are as strong as the urge to eat, if not stronger.  And as a parent, you beat yourself up over and over and over again for missing the signs.  How could I, of all people miss the signs?  But when it's your own child.......you fail to see the signposts.  At the time, they are subtle.  In retrospect, those signposts are harsh and glaring, mocking me for my failure.  You think it's teenage angst.  Or just a phase.  By the time you've got it identified, the irreparable damage has been done. 

November 25, 2013

old wounds

The following is not FACTUALLY accurate. Details have been changed, things deleted, stuff made up, all to protect identity. But it is 100% absolutely true.


Help, lofty genius! Muses, manifest
  Goodwill to me! Recording what befell,
  Do thou, O mind, now show thee at thy best
- Canto II from Dante's Inferno

     Without even looking at the chart, this poor young woman was college age at the oldest.  And there by her side was her younger brother.  We were consulted for essentially existential anxiety.  The patient had exhausted every option at their own hospital and were now at MD Anderson to see if they could pull a miracle.  As I sat talking, but mostly listening to her story, she began to have pain spikes.  I knew what those were all too well.  Already on a dilaudid drip and clicker on demand, she was on the best pain control possible short of putting her into a medically induced coma.  But still the pain spikes hit and during the spike her whole body would grimace and contort.  She or her brother would click the button to administer the extra medicine and wait for it to subside.  There was little medically I could do as she was receiving the best care possible.  So I held her hand and told her to squeeze it until the pain passed.  Sometimes the best thing a doctor can do is just be present and witness and honor their story and suffering. 
     The pain would pass and then she would continue telling her story with tears beginning to well up in her eyes.  She was also concerned about her mother which would cause her mother to cry.  And behind it all stood her brother unwavering.  It was all I could do to not start crying myself.  The only thing that kept me from crying was I didn't not want to intrude on their pain.  This was not about me, despite all the similarities.  It was about them and their experience.  She eventually finished her story and I reassured them that we were available to them for any help we could provide.  I walked out and waited for my resident to present to.  While waiting, the brother came out of the room to look for a coke machine.  While it was not about me, I felt that I did have something to offer the brother.  I interrupted his search and spoke to him briefly.  I told him to make sure he takes care of himself and especially his mother as they were both going through hell.  And I also gave the well used line, "and besides, how can you care for your sister if you're too broken and worn down?"
     My resident showed up shortly after and I presented to her without breaking down into tears, though my eyes did get a bit watery.  It was ok, my resident already knew my experiences with cancer (she had asked me why I seemed so comfortable around the dying patients).  There was very little we could do medically for this patient except listen.  The mother was religious so we put in a request for a chaplain.  Of course the chaplain was a familiar face from my experiences with my own brother.  Doing rounds the next day, I bumped into the chaplain and asked for his thoughts on the case.  I then bared my own experiences with him and his face went ashen.  He pulled out his card and gave it to me insisting that I contact him at some point.  I never did.  I was too busy.  Too much to do.  I wish I had taken my own advice and taken care of myself first.

November 22, 2013

relationship to pain

     Chronic pain is a difficult entity to treat.  Even if one has a purely organic cause of the pain, there are still emotions about the pain that can factor in and complicate the issue.  Pain is the relationship of your nerves, your neurology, your psyche, and your physical source of pain.  No wonder we're not good at treating it.  We simply do not understand the individual pieces of that puzzle, much less how they fit together.  I understand that stress cannot possibly not play a role in my pain.  But I am also able to predict weather fronts or a northerly breeze with a high degree of accuracy which would put a goodly portion of my pain into the organic realm and not emotional.  Whatever that relationship, it is not one I understand well.  Neither have any of the numerous doctors or physical therapists given me a sufficient explanation, much less a successful treatment.  The pain management doc went so far as to accuse me of being a drug seeker despite my not requesting any medication from them.  Being who I am, trying to understand it is important so being accused did not sit well with me.
     About the only branch with an explanation, albeit non-verifiable, is eastern medicine.  And the concept of chi is pretty ludicrous to me.  But hell, we've used medications numerous times without having a clue how they worked, or we had presumed an incorrect explanation.  Perhaps the Chinese stumbled on something millennia ago that simply works.  Their explanation doesn't have to make sense.  For me, it just has to work.  And I do get some relief from acupuncture, albeit temporary like everything else.


     Each one of these needles represents where I have, for lack of a better term, a trigger point (they continue down my right arm though you cannot see them).  These are points in the muscle that are hard, and when pressed deeply, elicit pain that extends beyond the point.  I asked the acupuncturist for the picture just for my curiosity of what the needles looked like.  When I looked at the picture, two thoughts jumped into my head, and they had nothing to do with the needles.  That part of my lower back with the four needles looks swollen.  And the upper part of my back that has 5 or 6 needles in it also looks angry.  I showed the picture to my wife, almost indignantly stating, "look at this!" feeling a need to prove that I'm not making up my pain.  It's not just stress.  Something is physically wrong with my muscles.
      "That?  Oh, your back always looks like that," she replies nonchalantly.
      "What?!?!?  Seriously???  So I'm not crazy.  I am not making this pain up."
      "Yeah, that's your back at 'normal'.  I figured you already knew that."
      In some sense, I do feel better that I'm not making this up.  It's important at this point in my life to have something make sense.  Even if only a little bit.  I shattered my right collar bone which alters the anatomy of my shoulder and my spine at that level has an extra vertebra which causes it to curve a bit to the left.  Both of these add up to a shoulder and back that have "issues", if not a proper diagnosis.  After all, my left back doesn't hurt at all.  So this simple picture helps change my relationship with the pain.  The relationship has evolved into one that is moving more towards acceptance and thinking about it less, which can only be a good thing.  I worry less about the role that stress may be playing into it and accept that it is what it is.  I accept the limitation of what my shoulder is.  Whether this acceptance alters the physicality or intensity of the pain remains to be seen (maybe, maybe not) but it is nice to know I'm not losing my mind.

November 18, 2013

existential anxiety

     As an inpatient psychiatry service at MD Anderson, we filled a role that is probably a bit different from other inpatient psyche services at other hospitals.  Our consults dealt with two main problems.  The first was altered mental state, usually after surgery.  Take someone at least 60 years old, stick them in the hospital, operate on them and a large portion will have an acute onset of dementia, especially at night.  They're affectionately named 'sundowners' because as the sun sets, the weird behavior begins.  While it is debilitating to the patient and exasperating to the night team, especially the nurses, it's temporary and treatable but that's not what this post is about. 
     The second reason for a consult from our service was what was brilliantly named by the head attending - existential anxiety.  This is not anxiety from someone with an anxiety disorder.  This is not anxiety from someone who is terrified of hospitals.  This is anxiety about dying.  It's not the least bit pathological in my mind.  In fact, it is a completely inherent part of the human condition when one is faced with knowing that death is likely imminent.  How else is one supposed to feel, especially in the younger patients?  What is the "normal" reaction that is expected in a 20 something or a 30 something when faced with such circumstances?  Existential anxiety seems the most appropriate reaction possible.

November 15, 2013

repetition

     For better of for worse, I find myself resorting to the same coping mechanisms I used during my brother's illness as well as after his death.  Perhaps they work, perhaps the familiarity of them comforts me, perhaps I'm grasping blindly at straws.  I stumbled across a blog post I wrote only 5 days after my brother died with the salient part being an excerpt from Steinbeck's East of Eden.  Out of repetition and familiarity, I will quote it again:

     Samuel sat down quietly, and he didn't trouble Adam by looking him too much, and he didn't trouble him by not looking at him.  The wind freshened in the treetops and a fringe of it ruffled Samuel's hair.  "I thought I'd better get back to the wells," Samuel said softly
     Adam's voice had gone rusty from lack of use.  "No," he said, "I don't want any wells.  I'll pay for the work you did."
     Samuel leaned over the basket and put his finger against the small palm of one of the twins and the fingers closed and held on.  "I guess the last bad habit a man will give up is advising."
     "I don't want advice."
     "Nobody does.  It's a giver's present.  Go through the motions, Adam."
     "What motions?"
     "Act out being alive, like a play.  And after a while, a long while, it will be true."
     "Why should I?" Adam asked.
     Samuel was looking at the twins.  "You're going to pass something down no matter what you do or if you do nothing.  Even if you let yourself go fallow, the weeds will grow and the brambles.  Something will grow."
     Adam did not answer, and Samuel stood up.  "I'll be back," he said.  "I'll be back again and again.  Go through the motions, Adam."
     I am Adam as well as Samuel.  The Samuel in me already knows loss and hurt.  It tells me to go through the motions.  But the Adam in me knows a new pain, a different hurt, a different loss, in nearly every way, a more soul wrenching loss, and says, "why should I?"

November 12, 2013

counting up my demons


     Though it was a year ago, I never blogged about my experiences during my psychiatry rotation at MD Anderson.  It certainly was not due to lack of material.  Perhaps it's taken me that long to feel comfortable writing about them.  Without a doubt, it was the most emotionally demanding rotation I went through so far, though I have yet to complete pediatrics successfully (I stopped after encountering a patient resembling my son while on call).  Or, perhaps I had no idea how to even give it words?  How do I properly do these patient's story justice?  It hit all to close to home as their are some universalities to human suffering, at least as it relates to cancer.  Time to confront those demons before I go back to my rotations full time.  I start with pediatrics so I will have all new demons to confront then.  Best exorcise these while I can.

November 10, 2013

down

     Despite being asleep, my hiking partner's pulse cruised in the 120s.  Eight hours prior, four of us had made the final ascent during the dark of night up Mt Kenya so that we would be standing at 16,355 feet watching the sun rise over the clouds far below us.  Our original intent was to hike down a longer but more scenic route.  But one of us was hurting badly, ironically the one in the best shape.  Vomiting came not once but twice on the ascent.  Even though this time period vastly preceded my medical days, I knew this was the onset of Acute Mountain Sickness (AMS).  The only cure is to go down.  So I volunteered to take the sick partner back down the way we ascended as it represented the quickest way down.
     We descended roughly 2,000 feet in a short amount of time.  My partner looked like shit despite the descent.  "Take a nap," I said, "and we'll go from there."  It was about noon now and I cooked some lunch.  After an hour's rest, the pulse was still in the 120s.  Not good.  We can't camp here.  Untreated, AMS can proceed to pulmonary and/or cerebral edema.  Given we were in a third world country far, far from  medical attention, much less first world medicine, any edema would be lethal.  So I emptied their backpack and loaded mine up to essentially double the weight.  I woke them up and said, "we need to get you down.  This isn't looking good." 
     So down, down, down further we went.  By then, we were no longer above the clouds.  We were in the clouds which limited visibility to about 20-30 yards.  This was my first time climbing Mt Kenya so I was not exactly well familiarized with the route.  I had relied on our other partner who had climbed it before but was now descending the other side.  Not much help now.  Even a map and compass didn't help much when you can't see any landmarks to triangulate, at least to my limited skills.  And then to make matters worse, we hit the Vertical Bog.  The name pretty much describes it perfectly.  You muck and suck your feet out of knee deep bog-like conditions for about a mile.  I'm starting to get nervous that I'm losing the trail.  I can't see shit.  I don't even want to guess what my pack weighs but I know it's way over the 1/3 body weight guide.  I've been up and hiking since 10 pm last night.  And I've got a sick partner who's pounding headache and nausea are not improving despite the descent.
     Thoughts of Dante begin to arise.  There are no beacons, no signposts, no cairns, no trail in a bog.  Each step down is another step down into uncertainty.  Into the unknown.  Into hell.  It seems like a good as any time to panic but I can't show that to my sick partner who is depending on me.  And that is my situation now.  I have people depending on me, I can't see shit for the future.  My back is faltering under the load having already been worn down from the last three years of my life.  And I have little to no idea in which direction the next step leads except downwards.  Unlike the Mt Kenya adventure which eventually ended well after 18 hours of hiking, I have no such assurances here.  Each step down is another step down into the depths of hell.

November 1, 2013

on the edge of the night

It's the terror of knowing
What this world is about
Watching some good friends
Screaming 'Let me out'

Turned away from it all like a blind man
Sat on a fence but it don't work
Keep coming up with love
but it's so slashed and torn
Why - why - why ?

 'Cause love's such an old fashioned word
And love dares you to care for
The people on the edge of the Night
And love dares you to change our way of
Caring about ourselves
 - Freddie Mercury & David Bowie

     For the sake of my back and shoulder, I headed straight for the comfortable chair of the waiting room.  As I filled out hospital forms relating to my son's stay, in my peripheral vision was a man who was pacing and fidgeting.  Not unusual in the waiting room of a psych hospital.  But something about him seemed to want to get my attention.  As soon as I raised my eyes from the form, he approached me.  The me of five years ago would've been chastising myself for making eye contact with him and looking for a way to avoid any further interaction with someone who clearly was mentally sick. But now, I looked at him as just a human being, albeit one who is suffering from a deadly disease.  
     "C-c-can I borrow your ph-ph-phone?  Mine is d-d-dead," he asked haltingly.  Without hesitation, I unlocked my phone and handed it to him and then went back to filling out my forms.  I could tell his first call didn't pan out.  His second call apparently struck success.  He handed the phone back and was quite thankful.
     "Did you get your ride settled?" I asked him.
     "Yup.  I j-j-just have to walk over t-t-to the Taco B-b-bell."
     "Come on.  I'll give you a ride."  He at first resisted but I pointed out it was starting to rain and I was going that way anyways.  He accepted and we began to talk.
     "Why were you there?"  I guess he knew I wasn't ill so he wasn't sure what I was doing there.  Perhaps he was a bit paranoid.
     "My son."
     "How old is he?"
     "17."
     "M-m-man, I wish somebody had d-d-done something for m-m-me when I was 17.  I got off my meds.  That's why I-m-m-m like this now.  Did he do drugs?
     "Yup.  He was self-medicating before we found out he was sick."
     "Yeah......we do that," his voice trailed off, filled with sadness.
     When I dropped him off, he told me to keep fighting for my son (he has no idea).  I, in turn, shook his hand and told him he needs to stay on his meds.  In some ways, we weren't speaking to each other.  He was wishing someone had helped him more when he was young.  And I was wishing that I will not have to bury my son due to this illness.