July 21, 2011

break

I'm going to be taking a small break from blogging for about a week and a half.  Just need a little break.

July 20, 2011

happy birthday

     My brother should be turning 40 years old today.  Could've, should've, would've....didn't.  I've thought a lot about what would be an appropriate way of honoring his birthday?  And by what criteria is something 'appropriate'?  It will feel right, is my answer.  So I'll tell a story....

     Once upon a time, there was a young lad.  His father a preacher, and his mother an employee at a bookstore, they were not exactly financially well to do.  So it came with great surprise that one day for his 12th birthday, the boy received a shiny new bike.  By his standards, it was quite an expensive bike.  I'm sure it was by standards of the wallet of my parents, too.  The boy was young and impetuous, as many a young boy is.  He went riding his bike with several of his friends.  They stopped inside a shop for no more than five minutes.  While his bike was a wonder by his mind, it was surrounded by bikes that were two- to three-fold more expensive.  Ironically, the thief who walked by couldn't tell the difference either and stole the shiny new one.  Devastated and heartbroken, insult was added to injury by necessitating a long, arduous walk home.  Embarrassed and ashamed, he recounted the tale to his parents.
     The boy had a brother who was four years his senior.  Being older in age and more responsible, the older brother had saved up some of his earnings from his menial job of tending to the lawns of more affluent people.  Seeing his younger sibling suffer so moved his easily movable heart.  So he offered up his own hard-earned currency to purchase his younger brother another bike, shiny and pretty as the previous one.  And a lock. 

Happy birthday, brother.

July 19, 2011

the endless knot

     For about a week, the clouds parted and the curiousness of life pulled me in.  The anger that hung thick like a fog was nowhere to be seen.  Finally, a break!  Surely, the grief would be felt again but it would manifest in different forms.  What naivete.  The fog of anger settles once again in the valley of my mind, thick as it ever was.  Nothing much catches my attention.  I wake up.  I spend half the day battling the fog of anger.  As it begins to slowly burn off, I am left exhausted by the struggle.  Once the anger is placated, nothing fills the emotional void.  Barren emptiness.  I go to sleep numb, wake up and greet the fog again the next morning.  I am Sisyphus, doomed to roll a boulder up the hill only to watch it roll down again.  Repeat ad nauseum.
     The Kubler-Ross model of grief seems to imply some linearity to it.  I am not feeling that.  It's cyclical to me.  Endlessly so.  So it was with some comfort that I came across this passage from Facing Death and Finding Hope:
      Within a few weeks, the "full awareness" of my loss cycled around again, and the heart-wrenching pain and despair were just as intense as they had been the previous month. I was shocked. Why had the pain returned, as fresh and deep as before?
      "All right," I bargained, "maybe I didn't full experience and express all my grief, so this time I will, and then it will be finished."...A month later, the intense life-disrupting pain returned, along with my "full awareness" of the death.  The following month, again.  And the next month, again, with the same depth of intensity as the very first time.
      For two years, she went through this repeating cycle of grief - shock and disbelief, full awareness of the loss, and recovery - over the loss of her husband to cancer.  As she describes it, each trough was just as painful and just as raw as in the beginning.  Stages don't even begin to describe what I'm experiencing.  It's a chaotic labyrinth with no beginning and no end.  More of an endless knot, really.  A relatively recent study empirically tracked the emotions following a loss.  In this study, anger peaked at ~5.5 months followed by depression peaking at 6 months post loss.  And the downward slope after the peak wasn't exactly steep.  You mean this shit gets worse?

July 17, 2011

the needs of the dying

You know, the pain can be unbearable sometimes.  On other days, the pain is just there, like a bad toothache, and I get tense and irritable.  Please forgive me when I am in a bad mood; you may not know what it is like to live with constant pain and discomfort.  What is hardest is when no one believes the amount of pain I am having; that makes me feel crazy.  I need to be believed and I need to have my pain relieved.  But please don't knock me unconscious to do it.  I would rather experience a little pain, and still be conscious - to enjoy my life and my family, and to do my spiritual practice - while I am in the last few weeks of my life.
     My first reaction?  No comment, I'm not going to touch that one.  But that's not facing up to the situation.  Pain was an everpresent battle, and that's an understatement.  At times, my brother came down on the side of experiencing pain and still being conscious.  But towards the end, he told me, "make the pain go away."  This battle caused me to bear a still raw wound.  I did the best I could....but the doubt still gnaws at my guts, "what if it wasn't good enough?  What if he felt more pain than was necessary?  What if I failed him?"  When it will begin to heal is anyone's guess.  Probably not until I have more experience in managing the pain of more patients.

July 15, 2011

what to do?


The menace threatens, closing
And I'm frozen in the shadows
I'm not prepared to run away
And I'm not prepared to fight

I can't stand to reason
Or surrender to a reflex
I will trust my instincts
Or surrender to my fright

- freeze (part IV of fear) by peart


I made many a phone call to talk with hospice about what to do about the ever moving goal posts on controlling my brother's pain.

July 14, 2011

focus

     Seemingly random pieces of information like CD38 and ZAP70 began to coalesce into a distinct picture.  But subtle nuances of chromosomal deletions on chromosome 17 with seemingly contradictory multiple copies of p53 only sought to render the image out of focus again.  A lot of information came out at my dad's last doctor's visit, much of it technical jargon.  I'll do the best I can to summarize it here.

Where we've been
  • When we first started, my dad's hemoglobin had dropped to 6.6 (that's the molecule that carries oxygen in your body).  That's risking acute heart failure.  Quite dangerous, it warranted our first trip to the ER.  He wasn't able to make his own red blood cells as his bone marrow was being crowded out by the cancer cells (a clone of a B-cell which is a type of lymphocyte, to be exact).  Until the cancer cells were knocked back, he depended on blood transfusions.
  • He was able to walk about 20-30 feet before becoming exhausted and having to sit down to rest.  This was probably the most obvious medical result needed.  He was not in a good place.
  • Several crushed vertebrae were the source of great pain, nevermind the debilitation.  That was taken care of surgically.  How big a role the cancer played in weakening the vertebrae is not clear, though it's certain to have played some role.
  • His platelet counts were approaching a mildly dangerous level.  Much like the red blood cells, they were being crowded out by the cancer cells.  That put him at risk for deadly bleeds.
  • His neutrophils were dangerously low, again being crowded out.  That left him extremely susceptible to bacterial, and to a lesser extent fungal infections.  Normal bacteria found everywhere, and I do mean everywhere, suddenly had the potential to be life threatening to him.
  • Without treatment, I do NOT hesitate to claim that in all likelihood, my dad would have died by now.  It could have been infection, anemic crisis, bleed, whatever.  Point is, treatment was a must.  So what were the results of that?
Where we're at now
  • The chemotherapy has corrected much of the above.  Whenever he gets bloodwork done (at least weekly), we always get a printout of the results.  Anytime that a result is outside of the normal range, it is in bold type.  He has a lot bold type.  This is the FIRST time, I have ever gotten a printout where his hemoglobin was in the normal range.  It hit 14.0 which is just at the normal bottom range of a male (normal is 14.0 to 18.0).  That's a direct result of the chemotherapy doing its job.  By knocking back the cancer cells, it has made room for stem cells which form the red blood cells to do their thing.  This was corroborated by the recent bone marrow biopsy which showed a 400% increase in the number of normoblasts in the bone marrow which are a precursor of red blood cells. 
  • His neutrophils are now in a healthy range.  The consequence of that is after the 4th round of chemotherapy, we had NO, ZERO, ZIP, NADA trips to the ER.  No infections this time.  I think that's a first because we had ER visits after all the other rounds, if memory serves.  That's a result of the chemotherapy, antibiotics, as well as the drug Neupogen (thank you Amgen! the next time somebody makes drug companies out to be evil with straw man arguments, be sure to give them a swift kick to the groin for me).  It directly boosts his neutrophil counts.
  • His platelet counts, albeit in the low end, are still within the normal range and have been there for several months now.  Substantially less chance of dangerous bleed with those levels.
  • His bone marrow biopsy was complicated, but to give the reader's digest version, the chemotherapy is working.  The number of cancer cells have been greatly reduced to point that the official term is "residual".  The doc said that my dad is right where he needs to be.
  • As a result of all this, he simply feels better.   He's not skipping up and down the lane, mind you, but he has substantially more energy than before.  Gone are the days of walking 20-30 feet and having to sit down.  Not once did he have to ride in a wheelchair (as he did in the beginning) during our long wanderings at MD Anderson.
Where do we go now?
  • My dad is NOT cured.  I want to make that clear.  Even though things are going well, the chemo regimen does not offer a cure.  Even if the next bone marrow after 6 months shows zero cancer cells, it is still not cured.  So why even do the chemo, then?  Because without it, he'd be dead.  Sorry to be so blunt, but those are the facts.
  • So how long does the chemo give him?  That's a good question and to be honest, we don't know.  My dad's chromosomal abnormalities and genetic profile is murky and confusing.  At the end of the day, though, it is HIGHLY LIKELY that my dad will require a stem cell transplant, in the words of the doctor.  My take is, in the absence of a miracle, he's heading for a stem cell transplant.  Period.  While a long remission would be nice, I don't bank on miracles when making plans about the future.  A stem cell transplant will be necessary for my dad to continue his life.
  • So, he's heading for a stem cell transplant (STC) then?  Why not right away?  Well, first of all, the patient needs to be somewhat stable to endure STC.  So the chemo was necessary and prudent.  Second, it takes time to prepare for STC -  stable patient, a suitable match, etc.
  • So if not now, then when?  Good question.  It depends.  This is where we pull out the crystal ball and use the subtle shades of gray and nuances that make medicine an art.  Barring any unforseen complications, my dad will finish out the remaining two rounds of chemotherapy.  That puts anything out at least 8 weeks from now, late-September at the earliest.  First, we have to find a match.  We got notification that one of his brothers is a match.  We do NOT know how good of a match he is.  They look at 10 markers.  If the brother matches 10/10, then my dad will in all probability proceed with the stem cell transplant after the 6th round of chemo.  Strike while the iron is hot.  If the brother is a 7/10 or 8/10, then it depends.  If my dad is stable and doing well clinically, then they will continue to look for a better donor (9/10 or 10/10).  That may last 6 months.  That may last 12 months.  It may only last 1-2 months.  We don't know how long we'll get.  If my dad's cancer begins to act up again and come back, then we may have to go into STC with whatever match we have at that moment.  Or, we try a second line chemo to try to buy another 4-6 months.  Who knows.  Crystal ball and all that.  There are no definite decisions or concrete pathways.
  • We still have one brother who has submitted his test but the results are pending.  Having a backup at this point is absolutely necessary, especially since we do not know if the current match is sufficient.  If neither matches up well enough, we begin to search the national registry. 
I hope that makes things a bit clearer.  I know a lot of people having been waiting to hear how he's doing.  We certainly do appreciate all the support from family and friends that we have continued to receive, especially in light of grieving while trying to fight yet another battle.

July 13, 2011

timshel

But you are not alone in this
And you are not alone in this
As brothers we will stand and we will hold your hand
Hold your hand
- timshel by mumford & sons

July 12, 2011

the needs of the dying

     One of my deepest, most powerful fears is that I will be reduced to the situation of an infant, helpless and incoherent.  I fear that you will forget who I am and treat me with disrespect.  Even thinking about others taking care of my most intimate needs makes me feel ashamed.  And every step closer to death makes me realize I will soon be totally dependent on others.  Please try to understand when I resist giving in to one more change, one more loss.  Help me to take care of myself, even in little ways, so that it will be easier to tolerate the bigger changes which are coming. 
     When everyone treats me as though they know what is best for me, I get so angry.  Aren't I the person who is ill?  Isn't this my life, and my body?
     One of the biggest challenges my brother and my dad both faced is the concept of being reduced to something less than a whole man.  To some extent, they were raised to equate work with worth.  A man is what a man does.  To no longer be able to do what you love does something inside to a man.  And it's not pretty.  It's damned hard to watch and it's a damned sight harder to have to intercede on their behalf.

more than anger

video
    
     A hermit crab seemingly wanders aimlessly on the beach.  No discernible direction.  It can traverse underwater withstanding the rough surf while still being able to breathe; or, it can readily glide through the ephemeral medium of air picking for tidbits of food along the beach.  When in the shell, it is safer from danger, but unable to move.  In order to move, it risks exposure and emerges from the shell.  In order to grow, it must abandon its shell altogether in search of another that fits better.  Neither exclusively terrestrial nor aquatic, it is the embodiment of adaptable and aimless purpose.
     Cancer is named for just such a crab, specifically the zodiac sign of the crab which is Cancer.  Early healers observed that the tumor and its blood vessels ran in every direction, much like a crab would navigate.  The fact that a zodiac sign was used is curious to me.  Did it signify a feeling that dealing with this disease is akin to our fates being controlled by the stars?  In other words, much of cancer is out of our hands. 
     It takes us into places that we did not know existed, into areas where we cannot breathe, where the waves beat us senseless, where there simply is no direction.  Retreat into the shell or risk exposure by growing?  This particular hermit crab was found on our yearly pilgrammage to the beach but this trip was far different from previous years.  The planning of the trip always fell under the purview of my brother.  It first started out with just him and his wife when their kids were quite young.  It then slowly grew into a larger family affair centered on Mother's Day.  Last year, he delayed it because my finals overlapped with the traditional date.  I remember the trip well.  At the time, the chemo had worked well giving us a short lived sense of hope.  He and I were bodysurfing in the waves feeling the joy at life.
     This year, he died on the weekend that he had planned on having the trip.  We wondered about whether we should go at all this year.  The loss was still too raw, too soon, and the trip was his trip.  How could we go without him?  So many more feelings than just anger.  But we went.  A customer of my dad graciously offered us her beach house for free.  She had lost her husband to cancer recently and knew all too well its sting.  Shortly after my wife and I arrived at the beach house, my dad yelled from the other room, "COME AND READ THIS."
     "Hold on, mom's showing me something."
     "NO, COME NOW!"
     He had a message from MD Anderson.  One of his brothers tested positive for being a potential stem cell donor.  The trip became all the more imbued with confusing emotions.  Missing the lost, or celebrating the chance at life?  How does one do both?  Mourning and celebration are nearly mutually exclusive emotions.  I know that firsthand.  It's counterintuitive and requires emotional contortions, but it is possible.  It's a bit like a wandering crab moving from liquid to air, from the safety of the shell to the exposed danger of searching out a new shell.

July 6, 2011

anger - the bloom

     Just a few short days after my brother died, his son was staying down at our house in Houston.  He slept on our couch.  The next morning I asked him, "do you know your dad built this couch?"
     Of course he did.  He soaks up everything that touched his dad.  He even wears his dad's Michigan football sweatshirts in the Texas summers.  Like I said, he soaks up Everything.  Including the couch.  "Do you know why it's so long?"  That he didn't know.



     My brother made this couch when he was in college.  It served as his bed during one year of living in a house with some buddies so it had to be extra long to fit his 6'4" frame.  He gave it to my wife and I when we were newlyweds.  We had zilch so any furniture was well appreciated.  Come to think of it, we had zilch for anything.  He also gave us his car.  That's the kind of guy he was.  A heart as big as his height.  When we got on our feet, I offered the couch back to him.  His craft at woodworking had improved greatly so he turned it down.  He made that couch during his "Cargo" phase.  He had moved on past that.  My wife, however, developed an attachment to the couch.  So we kept it.  Who knew that couch would become a vessel to carry his memory.
     And after I told the story to my nephew, I felt hollow.  I'm not sure what I was expecting.  I guess that I hoped to give him some piece of his dad, no matter how small.  But that seemed such a futile effort.  How could it be anything but impotent?  What was I supposed to do for his son?  He didn't tell me.  He left no instructions, no guidance, no path.  I'm left sorting through my own anger while trying to figure out how to relate to those he left behind.  I began waking every morning with a sense of anger.

the needs of the dying

Even though this is a difficult time in my own life, often my main worry is about how my condition is affecting my loved ones.  They seem so lost, so burdened, so alone with all of the changes they are experienceing, and all the responsibilities they shoulder.  And what about their future?  How are they going to cope after I am gone?  I'm afraid I'm leaving them stranded and alone.  Some days, when everyone comes in with different emotions and needs, I am too weak to handle it all.  I can't possibly listen to everyone and all their burdens.
Very, very, very true.  My brother voiced concern over his kids and his wife on many an occassion to me.  Too many to count.

July 5, 2011

anger - the seeds

      I took the summer off from all school related activities.  The research project I had lined up went into the dustbin.  Instead, I planned on spending my summer grieving.  I figured that I have about 10 weeks to get to some level of functioning that allows me to engage and handle school.  If I haven't reached that stage, I will be in trouble.  Big trouble. 
     But grief doesn't exactly work that way.  As my dad told me, "let me know how that goes for ya.  I've never known emotions to follow a timeline very well."  I have no delusions about being over the grief by then.  I just have delusions about being able to engage school without having to forget the loss of my brother or the struggle of my dad.  If I have not attained some level of comfort with the pain by then, I will be forced to compartmentalize myself in order to finish school.  Emotions will be pushed aside in order to study.  I don't want to have to do that but I will, if necessary.  I am determined to finish what I have set out to experience.  To that end, I have one final demon to exorcise.  Well, that's probably naive to think it the final one.  Not probably.  Most certainly it's naive and foolhardy to think it's the last one.  But it's a biggie.  And a painful one.....

      Time was short.  I didn't know how much time was left but I knew we were entering into the final phases.  I figured it was time to lay my heart all and say what I needed to say before it was too late.  "Is there anything, anything at all, I can do for the kids?"
     "Like what?"  Perplexed or irritated, I could not tell.  Perhaps a little of both.  Was I being presumptious in thinking that there was anything I could do?  What could I possibly do that would lessen the coming sting of death felt by his kids?  Was he thinking he could still beat this disease?  Was he simply exhausted and in too much pain to discuss it?  I will never know.  He did not tell me.

needs of the dying

Here's the most important thing: I want you to see me as a whole person, not as a disease, or a tragedy, or a fragile piece of glass.  Do not look at me with pity but rather with all your love and compassion.  Even though I am facing death, I am still living.  I want people to treat me normally and to include me in their lives.  Don't think that you cannot be completely open with me.  It is okay to tell me if I am making your life harder, or that you are feeling afraid or sad.
     Wow.  That first one was definitely true for my brother.  True story.  I'm staying down at a hotel with him while he got the radiation treatments.  We were talking, a deep and hard conversation.  Then there was a silence that hung in the air.  I sat with him for maybe sixty seconds to see if anything else needed to be discussed.  He broke the silence with, "why are you looking at me?"
     "I was just making sure I didn't have anything else to say," was my response.
     "Well, mom will just stare at me and it freaks me out."  And with that, I retreated to the other side of the room.  It's hard to hide in a hotel room.  Not exactly a lot of corners and his condition precluded me from giving him his privacy by up and leaving.  I know what he meant, though.  He'd said it multiple times.  He despised how this disease had come to define him through it's limitations.  He wanted to be treated normally.  But there were things he couldn't do so we had to do them for him.  It left him feeling weak and burdensome.  It was a constant struggle because the disease kept changing the rules of the game.  We'd figure out what he needed help with and what he could do on his own.  He had some semblance of autonomy for a period.  But then the disease would take that away, too.  So he'd need more special treatment which just further fed the feeling of being treated as a disease instead of a person. 
     That last sentence was not true, at least for me as I related to him.  He hated feeling like a burden.  So I always told him that cancer was the burden, not him.  I never sensed that he was ok with that metaphor.

July 4, 2011

the needs of the dying

Do you know that I'm afraid to express my true thoughts and feelings?  What if everyone I care about runs away and leaves me all alone?  After all, you might not believe how hard this really is.  Thats why I need you to reassure me that you understand my suffering, and that you are willing to stay with me through the process of dying.  I need to know that you will listen to me, respect me, and accept me, no matter what sort of mood I am in on any particular day.
     I don't know if that first and second sentence was true for my brother.  Never said it to me.  There was definitely fear present.  In all of us.  Myself included.  Him, too.  I do know in the very beginning, he asked his wife to be strong for him.  Needed her to not let the emotions out in front of him.  Also expected it from my mom, now that I think about it.  Was he afraid that we might abandon him?  Wow.  I certainly hope not.  Did we give him enough reassurance?  Enough confidence in our love?  I believe so.
     But that third statement.  The one about how we as outsiders do not know how hard it truly is.  He said that to me.  Multiple times.  Usually with anger.  My dad, too.  His was with anger, too.  Definitely true.  Very true.  And they are right.  I don't know.  I don't have cancer.  And I never want to know what that's like.
     And the last part about acceptance?  We all need that one.  Regardless of living or dying.  Every single one of us.  No matter the depth of feeling.  Or, how dark the mood.  Every.  Single.  One of Us.

July 3, 2011

the needs of the dying

     On the recommendation of a professor, I started reading the book Facing Death and Finding Hope:  A guide to the emotional and spiritual care of the dying.  Her husband was diagnosed with acute leukemia at only 24 years of age and died about a year after.  And from where I sit, it doesn't matter much what kind of cancer a person has when it comes to dying.  A cancer death is a brutal death.  Her loss occurred back in the mid 70s when the hospice concept was just getting started.  After her husband's death she became heavily involved in the local hospice programs.  From her experience, she writes one chapter where she says:
After years of listening to many people who are dying, hearing them try to articulate what they need during this most difficult passage of their lives, I will try to speak for them to you, their loved ones and caregivers.  I will speak with one voice representing all their many voices, communicating the emotional, practical, and spiritual needs of a human being facing imminent death.
     Some ring true, very true, either from my perspective, from what I heard my brother express or from what I witnessed of us surrounding him.  I'd like to dole them out in small amounts.  Reading them all at once was a bit much, at least for me.
I am going through so many changes; I feel so uncertain about my future.  Sometimes all I can see in front of me are those future things I am afraid of.  And each day, my fear ignities a different emotion.  Some days I can't take it in and I need to believe it isn't happening.  So there might be days or even weeks that I will feel sad, or act irritated.  If you can listen and accept me, without trying to change or fix my mood, I will eventually get over it and be able to relax, and perhaps even laugh with you again.