update

I'm not sure how my mom is doing it.  A week ago last Friday, she had her husband going in for kyphoplasty (they inject a cement into the crushed vertebrae to reinforce the bone) while her son was going in for a bone marrow biopsy to determine why he's so anemic.  Options ranged from tumors crowding out the bone marrow to a preleukemia to some other more complicated possibilities.  In a nutshell, he was getting the exact same work up my dad got a few weeks back for his CLL.  Not being able to be in two places at once, I'm sure she was torn.  Unfortunately, there will probably be more circumstances like that.

My dad is recovering slowly.  Still in pain but he's recovering some movement.  In a week and a half, he's back down at MDACC to determine the next course of action which will most likely be chemotherapy.  [Caveat - Everything after this sentence is pure conjecture on my part from reading the literature and between the lines of his results.]  He's also going to be evaluated for stem cell therapy but I'm not real sure where that conversation is headed.  The fact that it is being offered cuts a bit both ways for me.  On the one hand, it's a curative approach which is definitely worth looking at.  On the other hand, I do not think they would be offering this unless his disease was serious.  Obviously, every cancer is serious but CLL is pretty wide ranging in its malignancy potential.  Stem cell transplants are not trivial and not without a risk of their own.  While his blood counts didn't look terribly severe, after combing the literature more, the results of his biopsy seem to indicate to me that he is in a high-risk category. 

Meanwhile, my brother's biopsy came back showing that two things are preventing his red blood cells and platelets from being produced.  The presence of tumor cells are crowding the regular bone marrow out, but there is also scar tissue present which further limits the bone marrow.  In the immediate term, he received 2 units of blood to buffer his anemia.  Not much can be done for the low platelet count.  So long as he doesn't encounter a serious bleed, that should be ok.  Long term, I do not know what the next step is for him.  My hunch is he will be headed for chemo, as well.  Whether or not any clinical trials are still on the table is unknown but we should have a better answer this coming week.

experiences

experience #1

We wait.....and wait......and wait in the Clinical Trial department. Finally, someone whom we presume is the research coordinator, as she fails to introduce herself, enters the room. My brother did not get into the PI3K inhibitor clinical trial as the company had temporarily halted enrollment. She starts going into a potential alternative clinical trial for my brother. She starts spouting off words like 'bendamustine' and 'avastin' and then asks if he has questions. Really? Short of someone with training in oncology, what person is going to know what these words mean, much less if these are good drug options for him? I ask for some basic enrollment questions and she's not even up to speed on the specifics. Great. She leaves (thankfully) and we wait for the doc....and wait.....and wait. Nearly three hours after our appointment time, the doc walks in, sits down, and the first thing out of her mouth is, "do you have any questions for me?" I can hear my brother's frustration as he tries to wrap his brain around what in the world is going on. We showed up early that morning so he could get bled to determine if he'd be eligible for a PI3K clinical trial. Now we have a Plan B thrown out there with absolutely no background given and the doc is asking for any questions. Fine. I've got one. "I thought avastin was contraindicated in squamous cell tumors. Can you please comment on the risk of hemoptysis in combining avastin with a cytotoxic agent in the context of a squamous cell morphology?" No? Then please go do your homework first before entering into the room. I understand this doc was covering for another but have the professional courtesy to at least glance at the chart before entering the room. Walking in with no prior knowledge of the patient's diagnosis and status just isn't helpful at all. At least review the bloodwork, but no, we didn't even get that.

experience #2

Again, we wait.....and wait.....and wait. This time it’s for Supportive Care to review my brother’s pain management. The wait is not quite as bothersome because A) we didn't have an appointment and it was only through their kindness that they agreed to squeeze my brother in and B) there's a comfy bed for my brother to snooze in. But still we wait. The nurse comes in and he gathers the basics. Back to waiting and the nurse quickly peaks his head in. My mom asks, "any idea how much longer it's going to be?" Just a few more minutes. The doctor is reviewing my brother's chart. What a novel concept.

He comes in and begins the usual, "tell me what's going on." My brother has to be sick of repeating his story hundreds of times over and I suppress the urge to give a quick medical review of him to save time but I know the doctor needs to hear it from the patient's mouth. From his accent, I can tell the doctor is Canadian, eh, but I don't hold it against him, eh. He is soft spoken, calm, patient, and attentive. My brother asks him some questions. I ask some. And my mother asks some. He thoughtfully engages each one in turn, draws diagrams to help explain his logic, and gives firm answers when necessary. He is clearly in charge of the situation and carries a certain degree of quiet confidence (reviewing the chart helps, too). But most importantly, he has the presence of mind to look at my brother's pain management thus far, looks at the severity of pain being experienced and says, "this obviously isn't working. Are you game to try something different?"

I know what kind of experiences I will want my patients to encounter.

cross posted over at freelancemd.com

an act of defiance

For Valentine's day, I planted an apple tree for my wife.  A bit of a strange gift but we have a bit of a strange relationship.  As I planted it, I was struck by a realization.  Planting a plant presumes a sense to cultivate some sense of order and beauty in a world where chaos is the natural order.  You have to water it, spread manure around it, weed it, prune it.  Without resilience, without diligence, without understanding, things tend to fall apart.  Even with all that, there's no guarantee that it will survive and produce fruit.  Loving, truly loving someone embodies that same sentiment.  Love is not some sentimental emotion.  It's an act of defiance against the natural order.  It's holding on to the notion that in spite of all the pain in our lives, something beautiful and worthwhile exists.  Not for the faint of heart, it's sticky, it's difficult, it's painful and it takes enormous amounts of work.  But there are days of late when I feel that my love for her is all that I have left to hold onto.  And as I sit and look at that tree, it couldn't have been a more meaningful and beautiful shrine to our relationship.

rough week

my dad

     First, we met with the orthopedist to go over the MRI results.  It turns out he has a handful of fractures along his vertebrae.  Words that you never want to hear combined in the same sentence are 'multiple fractures' and 'spine'.  The biggie is along what's known as Lumbar 1 (L1).  It's the vertebra that is right where the ribs end and the sway of the small of your back begins.  He then has several fractures that the x-ray was unable to detect but the MRI picked up along the vertebrae above and below it.  And more than slightly disconcerting, he has some old fractures up in the thoracic region of his spine.  Since he suffered no blunt force trauma, the question then became what weakened the bones to allow them to be cracked under the grunts of muscular straining.  Most likely, the cancer probably played some role in weakening the bones but that probably wouldn't explain that many fractures.  We don't have a bone density scan yet but odds are that he has some osteoporosis going on concurrent with the CLL.

    Second, we met with the oncologist to go over the final results of the biopsy and bloodwork.  While he does not have one of the most aggressive forms of CLL, neither does he have one so indolent that a wait-and-see approach is warranted.  He had 2 units of blood to buffer his worsening anemia and the plan moving forward is to have surgery next week to reinforce the bone with some cement which ostensibly will give quick and significant pain relief.  He'll then be given 2 to 4 weeks to recover and then he starts down a long road of chemotherapy which will likely last approximately 6 months receiving therapy every 4 weeks for a few days.  Somewhere in there, he'll begin treatment with osteoporosis drug(s).

my brother

    It's been rough on my brother....or, I guess I should say it's been rough on me watching my brother go through the past couple weeks.  Since he's been down here staying with my parents moving back and forth from MD Anderson, I've had the opportunity to spend more time with him, mostly as his gym buddy.  I have no idea what he's experiencing and I don't even like to imagine it.  It's hard to watch someone you care about in pain.  He's lost probably 50-60 pounds on what was an already slender frame from the beginning.  He missed getting into the clinical trial due to worsening anemia (notice a pattern here?).  They gave him 2 units of blood and Plan A is to wait 2 more weeks to see if his anemia stays above the cutoff.  They wouldn't give him more than 2 units.  It's a long convoluted story and all that I can say is PLEASE GIVE BLOOD on a regular basis if you're able.  There's essentially not enough blood so they triage and reserve it for catastrophic cases.  Not wanting to miss the cutoff again, my mom took my brother back up to Dallas to get another 2 units up there since it's a different blood supply.  You do what you gotta do.  He'll be back down here this week to see if he qualifies for the trial.  If he doesn't, there's Plan B.  From what I can tell, I don't like Plan B.  It was recommended by the clinical trial doctor and I was not impressed.  Maybe they know something I don't know.  As someone who's just a first year med student, I'd like that to be true but.....I guess there'd be a Plan C, too, though I do not know what that is.  I'd prefer to stick with Plan A and we'll know that answer by the end of this week.

between the sun & moon

The steaks are grilling over a bed of glowing embers.  I run in to my parents' house to make a protein shake for my brother.  A glass of milk and two scoops of chocolate whey protein.  A quick spin of the blades of the blender, into the glass it's poured, and then I set it into the fridge to wait until I serve it to him with his steak.  Back outside to the steaks I dash.  They're not quite done and so I instinctively reach for my glass of wine.  As I raise it up to my lips, I pause and take notice of what's in front of me.  The planet Venus shines next to a thin sliver of the moon about 70 degrees above the orange setting sun set against the dark blue of the coming night.  Not quite day.  Not quite night.  In between.  A bridge between future and past.  The fine line of living.

frustration

My brother

It seemed to be amateur hour at MDACC yesterday.  My brother's hemoglobin didn't even come close to holding steady.  It plummeted from 8.7 g/dL down to 7.6 g/dL.  The cutoff was 8.5 with at least 2 weeks since the last transfusion.  He's not necessarily disqualified from the clinical trial.  He needs to get some blood, wait 2 weeks, and be above the cutoff of 8.5.  How that happens is where it gets more confusing and tricky, not mention irritating.  I was ready to strangle 2 different nurses and 1 PA at their lack of any ability to think or do their basic job. 

Step 1 is to get the 2 units of blood.  Check.  My brother's on his way to do that right now.  Step 3 is to get into the clinical trial.  What's Step 2?  Step 2 is what's tricky.  Prior experience tells us that 2 units ain't going to cut it.  If he gets two units, the most we can hope for is that he jumps to mid 8's and then plummets back down into the 7's.  Been there, done that.  Not good enough.  Simple logic would dictate to get more than 2 units.  Apparently, the blood bank will only release them in 2 unit blocks in non-emergency situations.  So we're not sure if family members (both me and my mom are O negative so it's not a problem) can donate and bank it for him.  The PA basically said, I can get you 2 units and then you come back in 2 weeks.  It was a bit like a parrot repeating itself.  In my mind, Step 2 also needs to rule out the possibility of any hemolytic action going on.  We need to know if he's having a problem with making Red Blood Cells, keeping them alive, or both.  So we're trying to get back in to see his regular oncologist to address what's going on.  His nurse tried to tell me we needed an order from the clinical trial group to see his regular oncologist.  They then tried to pawn us off back on the clinical trial nurse.  Yeah, that wasn't going to fly.  So now we're waiting.... 

My dad

The MD Anderson doc cleared him to see an orthopedist about his back. Even though he has cancer, the back pain is far more debilitating and causing him severe pain. It turns out with good reason. He essentially broke his back. Three of his vertebrae were fractured as determined by the x-ray. Next step is to get an MRI today to see if there's any soft tissue damage (muscle, tendons, etc). From there, they'll make a decision about how to move forward.  Options range from an outpatient procedure where they reinforce the fractures with a cement to full blown surgery if there's a lot of soft tissue damage complicating things.  In the meantime, he's commiserating with my brother knowing pain and the rather nasty side effects that opiates induce.

So it's been a fun past couple of weeks with more entertainment to come.  Through this, I somehow had exams and managed to not blow it.  Microbiology had me miss High Pass by 2 points, Physiology has me right on the edge of High Pass, and my hands-on Clinical Physical Exam is next week.  I guess I need to start practicing that one.  Hey, it's only a 110-E-Z steps to memorize and go through in 45 minutes on a patient with someone looking over your shoulder.  No sweat.



a more human physician

Last night at my "Healer's Art" seminar, there were two interesting mental exercises that we had.

Exercise #1

Everyone was given a blank piece of paper and an envelope and instructed to close your eyes.  We were told, "Close your eyes.  Now imagine someone either you now, or envision someone as a patient down the road.  Pretend that they have passed away and through some miracle, you are able to ask them a few questions.  What would you ask them?  Write down 2 or 3 questions on the paper.  There's no need to share them.  Seal the envelope.  In the future, you will have a patient under your care or someone you know pass away.  Open the envelope at the time and see if those questions still resonate or make sense."

Exercise #2

Again, everyone was given a blank piece of paper (no envelope this time).  Several faculty physicians shared experiences in their career where western empiricism failed to explain or carry them through a particular event in their career.  A surgeon told of his experiences in Haiti.  Another told of losing a premature baby in their arms.  One told of his first time having to deliver bad news to the parents of a sick child and them helping him out.  We were then instructed, "Close your eyes.  Envision a time in your life where you were struck by some experience of awe."

While I will not divulge the questions I sealed in the envelope, I will divulge what came to mind about awe-struck moments in my life as they relate to medicine.  They are related by events, though somewhat distinct.  The first moment that struck me is as follows:

     Last Christmas, both my dad and my brother helped me enormously by staining the concrete of my downstairs.  I had already ripped out the carpet due to my then ailing pooch who began to lose bodily functions.  He was the best dog I've ever had so I didn't mind.  Not being employed anymore, though, I also didn't want to be stuck with concrete floors indefinitely since I couldn't afford anything.  So my brother and dad came through for me.  We stained the concrete, and in addition to paying for the materials, they did the bulk of the labor.  We were headed to Whataburger for lunch after working on the floor and I distinctly remember sitting in my dad's truck and telling them, "I'm going to owe y'all a LOT of free healthcare."  A little over a year has passed and both of them are now battling cancer.  That's just a very striking set of circumstances to me.  To further drive the uniqueness of the circumstance home, they both went into a doctor with back pain and came out with cancer.  You just can't make stories like that up.

The second moment, though related, is somewhat different:

     To this day, I'm still not entirely sure what drove me into medical school.  Honest.  And med school is not exactly one of those things that people do on a whim.  You've got to really want it.  But looking back, I can't honestly pinpoint any moment where I thought, "yeah, I'm going to med school."  But here I am.  It just sorta happened.  I don't regret it and I'm glad it happened.  I just have no idea where it will lead.  But at this moment in time, if nothing else, it's better enabled me to deal with the adversity my family's going through.  And that alone makes it worthwhile.  And at some level, that knowledge will help to make me a more human physician.