excellence

    I can remember one of the first times I encountered the football team during my college years.  We were all sitting in the gym waiting on the head coach which was a common occurence.  Hurry up and wait, not unlike the military.  All of us freshman players were sitting together trying to fit in.  A group of the seniors were arguing and giving each other flack.  The quarterback was making bets that he could throw the ball across the basketball court from his knees and make it into the basket.  I snickered thinking it ridiculous.  He didn't make it but the ball did hit the rim and bounce back out.  My jaw about hit the floor at his accuracy.  That was, until we saw the seniors all together on the playing field.  It was no Division I team, just a small Division III school, but these guys were operating at a level of proficiency that blew me away.

     I felt that same feeling today when my dad met with his doc at MDACC.  It was like night and day comparing the oncologist we dealt with before to the oncology team at mdacc.  The other doc we saw before was ready to start chemo off of a simple Complete Blood Count (CBC) and a crude biopsy (the pathologist reading the sample even said the sample was subpar).  So MDACC took a biopsy of their own to assess pathology, genetic markers, chromosomal analysis, etc.  They then took blood to look at his CBC in addition to various molecular markers to get a more fine-tuned idea as to what was going on with my dad.  The physician's assistant (PA) met with us first and went through a rather detailed history and answering every single question.  He even taught me how to palpate my dad's lymph nodes (I had never felt them on our actors because a person who is not sick should not have enlarged lymph nodes).  The other doc didn't even bother to feel my dad's lymph nodes.  Then the doc came in the room next.  It was clear that he had reviewed all the files beforehand and was well aquainted with my dad's case up to this point.  In a nutshell, he wants more data.  Nothing clinically shows that my dad requires any immediate treatment so we have the luxury of waiting on more data to come in.  So over the next week or two, the in-depth results of the blood work and biopsy will filter in.  We then meet with the doctor in ~2 weeks to discuss the results and decide on what to do next. 

     Treatment options are pretty varied at this point.  They may range from full blown chemo to just an oral steroid (no big deal, I get them with sinusitis) to just a holding pattern where we monitor his blood counts.  So in a lot of ways, it was a big relief for my parents.  The other doctor had my dad ready to start chemo (he was definitely measure once, cut three times).  Now, we have a much more methodical, comprehensive, rational approach.  It'll probably be another 2 weeks before we have anymore definitive decisions on my dad but all in all, it was a good day.  I can rest a lot easier knowing that he is competent hands now.

update

My brother

     He went through the first steps yesterday of getting enrolled in a clinical trial.  One subset of his white blood cells had been running low but they came up well enough to qualify him for the trial.  His hemoglobin, though, continues to give difficulties.  Right now, it's running at 8.7 g/dL which is the highest it's been in awhile.  The cutoff for the trial is 8.5 without getting a blood transfusion in the past two weeks.  He gets another blood collection next Wednesday and it has to be 8.5 or greater in order to start the treatment.  If it is, he'll start on Thursday.  If not, he'll get a transfusion (and a big one to bump him well above the cutoff level), wait two weeks, and cross our fingers that there are still spots available in the trial.  In the meantime, he's getting a PET, an EKG, and an echocardiogram to insure he's heart is healthy enough for the trial.  On his end, he's upping the iron supplements and eating red meat to try to squeak into that spot.  Once he's in the trial, though, he's ok to get blood transfusions.  So we just need that value to last 8 days.

My dad

     All that we know at this point is that he has CLL.  We're switching doctors to MD Anderson for multiple reasons.  That may delay getting his treatment rolling a week or two but it's definitely worth it in the long run.  Measure twice, cut once.  His first appointment is tomorrow where he'll start the fun-all-day process of navigating MDACC with blood work, another biopsy, imaging, etc.  Ostensibly, we'll meet with the doctor sometime tomorrow afternoon (translation 6 pm if previous experiences are any guide) and go from there.  As I've said before, we ain't there for their great customer service.

update

From the current doctor, my dad has CLL (Chronic Lymphocytic Leukemia).  Of the possible options, this one is definitely the "less worse" form of the disease.  But with anything this important, it's prudent to always get a second opinion so I'm approaching it from a 99% probability until I hear it confirmed from another set of eyes.  That's also not to downplay the diagnosis.  It's a very dangerous disease and claims many lives.  A big part of the challenge is that many patients may not technically die from cancer.  They die due to life threatening bleeds or infections that would not be a big deal to the average person.  So it has to be aggressively and intelligently managed to prevent any catastrophic events.  And that's the reason we're trying to head down to MD Anderson.  It's the place to be if you've got cancer and we're pretty sure we've got a spot for him.

answer

My dad has lymphoma.  Still waiting to hear if it's CLL or MCL as that determines both the prognosis and treatment.  I am so sick of cancer right now.

questions

My family is waiting for the answers to questions. 

"What does the biopsy show?" 

"What caused this?"

"Will the investigational drug do anything?"

"Why is this happening?"

At my session last night on The Healer's Art, we were read a poem that is probably going to stick with me the rest of my life.  It's a poem by Rainer Rilke.

I would like to beg you dear Sir, as well as I can, to have patience with everything unresolved in your heart and to try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don't search for the answers, which could not be given to you now, because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer.

Rainer Maria Rilke, 1903

what comes out the other side?

    I'm enrolled in an extracurricular class entitled "The Healer's Art".  It's a six-part seminar whereby they train a more human and humane physician.  The second seminar was dubbed "Honoring Loss".  We were instructed to close our eyes, center ourselves and in our mind's eye go to a time where we dealt with disappointment, loss, grief.  No trouble there.  After some exercises, we broke into smaller groups to explore the role that loss plays in healing.  Personal stories were told and after recounting a much abbrievated tale of dealing my with my brother's illness as both brother and physician, I was asked, "did you find things out about yourself that you didn't know?"

    My reply, "in situations such as this, you never really know what you'll do until you're confronted with the situation."  A week has passed from that session and now I'm yet again confronted with more slings and arrows.  My dad went in for a physical and came back with a descriptive condition by the name of pancytopenia.  In a nutshell, his red blood cells (and corresponding hemoglobin), platelets and neutrophils are all way too low.  Family doc thinks, "maybe it's a fluke or instrument problem."  Retest.  Same answer comes back except his hemoglobin drops from 10.0 to 8.6 in just 7-days (normal for a male is >14 depending on the lab, anything less than 8.0 becomes critical anemia).  Conversations between my dad and I flow back and forth.  He thinks that it's due to a bleeding ulcer as he has a history of that.  Nothing terribly serious, in his estimation.  I can tell that he wants to believe that.  If only.  My gut tells me differently.  This is something potentially very serious.  And I'm angry because once again I'm thrust into the position of convincing a loved one that something very dangerous is going on.  This takes priority over everything else, period.  Where the hell is the doctor in all this?  Why does this keep happening?  After reflection, I accept that nobody wants any of these cards but this is the hand we're dealt.  My brother didn't want cancer.  My dad didn't want something from a deep dark road I don't even want to think about, but can't help (leukemia, lymphoma, aplastic anemia, etc).  A sense of naivete still hopes for something less ominous.  We'll have to wait for more testing. 

    The anger is still there.  If anything, it's intensified with the reflection and dealing with my brother going through a rough patch.  I start to wonder if I am capable of doing this.  But no, I can at least now put one foot in front of the other and accompany yet another family member to an oncologist to start the path of naming the demon we're confronted with.  This week, it's my dad.  Next week, it's my brother for a clinical trial.  Somewhere after that I supposedly have some exams, too.  In the midst of all this, I can tell that family members are beginning to become concerned about me.  It's a valid concern, I guess.  In looking ahead, I can't see a damned thing.  I used to think about what kind of doctor or person would come out the other side of medical training with a sense of curiousity.  Now, I have no idea.  How can I?  What kind of life comes out the other side of this?

glorious day

    I woke up, ate some pigs-in-a-blanket while watching and laughing at South Park.  I then went back to bed and slept until nearly noon.  After a lunch of consisting of my mom's leftover turkey toast, I went to tinker in my yard.  Took down the Christmas lights (better late than never) and drank some beer while watching the sun set listening to the sparrows and warblers feed at my bird feeders.  A very uneventful day.  It was a perfect decompression from the week.

    Three days at MD Anderson always leaves me feeling drained.  It's not a tiredness in a typical sense of the word.  It's a weariness that goes down past the bone right to my soul.  A few weeks back, my brother said that he started having a persisent headache that wouldn't go away.  Headaches were never an issue before with him.  He was insistent it had to do with the way he slept.  But in a cancer patient, any new ache or pain is scary.  The brain has no pain receptors of it's own so if pain is felt then that means a tumor is large enough to begin compressing parts of the brain.  At that point, it's almost too late to do anything about it.  So it was with great joy that his head/neck CT scan came back clean.  After the Fellow completely jacked our family around by the emotional nose ring (not even going to go into details), the attending oncologist gave more good news.  The primary tumor only grew about 2 mm.  Liver, kidneys, adrenals, lungs, great vessels were all clear.  The second tumor right next to the primary didn't grow at all.

     Aside from a great relief, I walked out with two threads.  First, I needed to learn about PI3K inhibitors.  A literature review yielded little information (companies rarely publish anything until they have some good data to present which is too early in this case).  So emails went out to colleagues I knew at the pharma company developing the therapy and to anyone who might know anything about this class of drugs.  The next step for my brother is an investigational therapy in the context of a clinical trial.  It's pretty simple really.  He takes the investigational therapy (a pill so no long nights in the chemo ward) and then gets scans periodically.  If his tumor stays the same or shrinks, he keeps taking the therapy indefinitely.  If it grows or he has horrific side effects, he abandons the therapy and goes on to another therapy.  Having multiple options is one of the major advantages of being at MD Anderson.

    The other thought stems from a conversation I had my brother last August.  He asked me what happens to the tumors when the chemo is stopped.  At the time, I had nothing to offer other than 'alternative therapies' involving supplements, nutrition, lifestyle, etc.  To be honest, I had little hope that it'd make a difference against a poorly differentiated squamous cell tumor.  Average lifespan is about 7 months from diagnosis.  The deck seemed stacked against him.  Of course I told no one of that at the time.  How could I?  So I kept it to myself and kept combing the literature for anything remotely promising.  But again, I had little hope.  Actually, I had no hope.  I'm not sure what one calls fighting on in the absence of any hope, but now....here we are after 3 consecutive scans with no chemo and the primary has remained mostly stable.  It's starting to make me a very devout believer that all those other things he is doing actually do matter.  So I guess now I have an answer to my brother's question from last Augst.  Keep doing what you're doing and add what we think will help.  Believe that it makes a difference.  It already has.

superstitions

     A palm reader says that by examining the lines on my hand, my fate can be discerned. As a rationalist, its obvious tripe. The person on the receiving end believes and adapts whatever is said to fit their own life.  And yet, when I stop and look at my own hands I see things. I see that the left thumb does not extend as it should. Chalk that up to getting it smashed between two football helmets. The scar on the middle finger of my left hand? Playing with a knife as a kid at the Texas Renaissance Festival where I nearly shortened said finger. The burn on my index finger? Lighting sparklers for my nephew. Then there are the callouses that line my palms from working out in the yard. Perhaps my hands can't tell my future but they can tell a decent story about my past.

     And I'm struck with the notion that perhaps the methods used by supposed charlatans are not too different from that of a physician. We both observe life and then draw conclusions from it.  Before empirical rationalism took hold, those superstitious viewpoints provided a framework in which to understand the world around us. They don't always make sense from a strictly linear point of view but I'm not so quick to discard them anymore. Case in point was this recent piece of research in which physicians took patients with Irritable Bowel Syndrome and treated them with a placebo. That's right, they compared patients who went to the doctor versus patients who went to the doctor and got a placebo. No drug was involved and there was no attempt to fool the patient into thinking it might be an actual drug. The doctor knew it was a placebo. The patient knew it was a placebo. And yet the patients who popped the known placebo pill demonstrated improvements in the severity of their disease versus those who didn't. It was a small study but it strikes home the notion that the placebo effect really needs to be taken apart with better clarity. Underneath lies tangible therapies that we really need to figure out how to tap into with better precision.

netter

If I were to go up to a doctor and ask them, "Name me one book that you recall from medical school," I would wager that a large majority of them would reply "Netter", especially surgeons.  Dr. Frank Netter was a physician and artist who made a monumental contribution to the training of physicians.  He drew hundreds of illustrations detailing the human physique at every level.  It's the one book that I can guarantee that I will keep and even reuse again and again over my career.  While I'll never be a surgeon, I find these images to be beautiful and mesmerizing in their own right.  And yes, I had to learn all of these details and then some.



between the four corners

     I haven't been hiking by myself since my son was a newborn.  It's been a looonnggg time.  Too long.  I used to do it much more frequently.  Somewhere along the line, life got busy and then there's the safety issue when one's choices no longer impact just yourself.  So it was with more than a little bit of pleasure that my wife practically kicked me out to go backpacking by myself.  The weather forecast, however, was holding me back.  I informed her that thunderstorms were likely and flash flooding isn't pleasant.  Much of my time would be confined to the tent.  Her retort, "then go find yourself between the four corners of your tent."  Wise words.  She knows me too well.

animist

     Over Christmas break I went backpacking in the Hill Country of central Texas.  As the title of my blog would suggest, I went by myself.  School starts up again next week and my brother has another round of CT scans to check the status of his cancer.  I went into the woods full well thinking that I would ruminate over those upcoming events.  To my surprise I did not. 

     I did, however, find myself thinking of my other brother with whom I have a strange and somewhat strained relationship which I never quite understood.  In retrospect, it was quite natural that I should think of him went I went into the hills.  He taught me much of what I know about the wilds.  At the time of my youth, he was an Army Ranger.  You can't get a much better survival teacher than that.  I remember he gave me his Ranger Handbook and I devoured it.  By the end of it, I remember showing my friends how I could make a still to get water.  Later when I was older, though not necesarily any wiser, while backpacking in the rainforest of East Africa, I recalled the lesson from the book on how to drink potentially tainted water.  You essentially take a 1/4 of a cup, wait a few hours.  If you're still ok, drink 1/2 a cup.  Repeat, cross your fingers, and hope your guts don't explode in amoebic dysentery.  It worked for me.  I don't know what happened to that handbook nor the army flashlight he gave me and the camoflauge face paint was long since used for Halloween costumes as a kid.  But one object still remains. 

     He probably doesn't know it but on every hiking trip I still carry with me his swiss army knife from his Ranger days.  Into the side of it, he had carved his nickname "SLICK" which was derived from our last name.  When I gave my son his own swiss army knife, I had him carve his name into his with my brother's knife.  I honestly don't recall him giving it to me.  But it's been with me on numerous journeys from the mountains of the Pacific northwest to the deserts of west Texas and the savannahs of East Africa.  With each trip, it becomes imbued with more sentimental importance.  When holding it, I can easily relate to the animist mentality as this knife absolutely has its own soul by now.  It's weathered and beaten and while the blades aren't quite as sharp anymore, I dearly love this knife.