The heart is a lonely hunter

free lunch!

2012-01-30T19:50:00.000-06:00

Free Lunch! That's what the sign said. Attracts pretty much any med student since we're poor and in way too much debt. That debt is about to get just a bit bigger. That 'free lunch' cost me 800 big ones. It was an advertisement for a prep course for the Step Exam. Half our class used it last year and their average was well above the national average. Sounds good to me. I texted my wife I just bought an $800 lunch and it consisted of a burrito.
If I do Family Practice as a career, I want it to be because I choose to do Family Practice. Not because my scores were so low that it was the only residency program I could get into. So the next time somebody tells you doctors simply make too much money, think of my $800 burrito. And the $150,000+ in loans. And the nearly decade of lost salary that I'm giving up. Nevermind the personal costs. And then please ram your fist straight down their throat for me. No, I guess the old adage is right. There is no such thing as a free lunch.

THE test

2012-01-28T07:04:00.000-06:00

Right after we got back from Christmas vacation, we were required to attend a meeting with a couple of the deans, which needless to say is unusual. She greeted us with, "welcome to one of your hardest semesters in your training." In June, we take our first licensing exam known by the boring name of Step I. Talk about the banality of evil. Frankly, it's more than a little terrifying as it's a monster exam (8 hours) and pretty much determines one's eligibility for various residency programs. And medicine keeps getting more and more complicated so there's more for us to know. More diseases, more genetics, more molecular mechanisms, more drugs, more everything. To illustrate that point, here's a few slides from a presentation recently given to us.

The first one represents a question from someone taking the Step I in the 1980s. It's easy. It simply asks what drug do you give for thrush. It gives the diagnosis to you right off the bat. Yeah, patients do that all the time. And it even uses the common term 'thrush' rather than the medicalese 'candidiasis'. The answer is E. Nystatin (though, to be quite honest, the drug doesn't work that well, you have to take it 4 times a day by swishing it around in your mouth, and it tastes like crap - not exactly a wonder drug).

Then in the 1990s, you are now required to first diagnosis the patient, and then figure out the therapy. A bit harder as it's now a 2-step process but still not too difficult.

Now fast forward to this decade. Rather than a simple question and answer, it's now become a three step process. First, you have to correctly diagnose the ailment. Not too hard. It's thrush. Wait, what about the picture? Is that really thrush? Could it be a bacterium? Nah, no bacterium looks like that. Definitely a fungus. But is it really a Candida species, or is it a different fungus which might alter therapy requirements? Does Candida have a germ tube or was that whatsitsnamethatIcan'trecall? They're trying to insert some fuzziness into the question. But let's stick to our guns and say Candidiasis, aka thrush. Second step. What's the drug to give here? It's still nystatin. But that's not the question. They want the mechanism of action of said drug. So even if you know the mechanism of nystatin, you've first had to diagnose and identify the proper treatment before you can even get around to answering the question. Or conversely, even if you know the first two but forgotten the mechanism, you're still boned. It's now a three step process and you've got 60 seconds to answer the question or you start to fall behind.

And I love this one. Like before, you have to first identify the ailment of the patient. It's alzheimer's. And what goes wrong in alzheimer's? Memory. And what part of the brain is that? Hippocampus. All of those are relatively easy. For me it gets substantially harder when I have to harken back to neuroanatomy and recall where the hippocampus is...on an MRI. Now repeat this process all day long. Oh, and you are to study for this while taking your regular classes. Like I said, more than a little terrifying.

here it comes

2012-01-26T15:42:00.000-06:00

My dad has an admission date for the stem cell transplant. It's March 1st. He'll actually start with getting all the preliminary stuff (echo for the heart, PET scan, lung function, dentist, etc) starting February 15th. On February 24th, he'll receive his first chemotherapy in the form of Rituxan as an outpatient. He's had that one before. The first couple of times, he had a moderate reaction to it but the last three he was fine with it (had them give the steroid before). Then on March 1st, he gets admitted to the hospital. That's when the chemo really starts in earnest as they lay waste to his bone marrow. On March 8th, he receives that (hopefully) life giving stem cell transplant that someone (thank you whomever you are) graciously decided to donate.

I'll take this moment to again plug that you, the reader, consider becoming a potential marrow donor. Just go to bethematch.org and they'll tell you what to do. It's an inconvenience to you but potentially life saving for the recipient. Not a bad trade.

How Doctors Die

2012-01-25T08:00:00.000-06:00

An interesting article about what types of decisions doctors make at the end of life, at least anectdotally.

How Doctors Die

strength in weakness

2012-01-20T10:58:00.000-06:00

     15th floor. Leukemia and lymphoma ward. My dad was admitted here twice, the second time the same day my brother died.  I knew the floor well. I had finished up with my patient and was waiting for the elevator. A phenomenal case. History of FOUR different cancers. Pulmonary embolism. Triple coronary bypass. A stroke. And still alive and kicking at 80 years young. Truly a touching experience.
    While waiting for the elevator a young guy walks slowly up with his IV pole. He's big and broad shouldered. I'm not exactly slight of frame but he towers over me. Probably in his early 20s, he sports a baldness that could easily be fashionable but his absence of eyebrows says the lack of hair is due to far more grim reasons. And below his eyebrows, his eyes catch me. There is a yearning in them. Something so elementally human which desired contact. I hesitate but then decide to let my sorrow and weakness guide me into uncharted elements of human contact.
    "Taking your pole for a walk, huh. Have you named it yet?" I ask of him. He must see some openess back in me which is surprising because I'm told that when I put on my white coat, I assume my old football persona. A take charge quarterback. But he sees something different and it comes out in his response.
    "Nah, not yet.....But I should. It's been my sixth pole.....I've...I've just been angry for so long. Ya know? It took awhile to work through that."
    "It is hard. I watched my brother fight his own battles with those poles."
    "Lymphoma? How's he doing?" I sensed a hope in his voice that he wanted to hear a story with a happy ending. Hear how someone beat this damned disease. Sorry, partner.
    "He passed away this past May due to thymic cancer. No, it's my dad who has lymphoma."
    "Geez. You a doctor?"
    "In-training."
    "Man, you're getting called to go into cancer."
    I grimly chuckle and reply, "I know. You sound just like my wife."
    The elevator settles down onto the first floor and the doors open. I turn to face him,grasp his hand firmly, look him straight in the eyes, and try with all my effort to convey compassion in my own eyes, "Hey, I wish you the best in your fight."
    "You, too. And God don't make no mistakes."

    A wise and wizened rabbi had counseled our class to engage each patient more fully. To not be so quick to put up our defences. To not be afraid to show our humanity. To truly connect as human beings. To do everything nearly opposite of what we are doctors are trained to do. And to do so we would be graced with a more rewarding career and less chance of burning out. I think I just had my first experience with that being true.

it begins anew

2012-01-18T22:58:00.000-06:00

"The mills of the gods grind slowly, but they grind exceedingly fine." Sextus Empiricus ~2nd century AD

As always, it begins with the phone call. It's always a phone call. My brother's disease. My dad's first strange blood result. I can remember exactly where I stood on each of these occasions. This time it heralds that the process of stem cell transplant is starting anew for my dad. Hope? Or, cancer calling western medicine's bluff? The gears of cancer begin to grind again. Not that they ever stopped. Perhaps we just stepped out of the mill these past few months. I could lie and say that I took advantage of this time by making the most of it. By making every moment count. By embracing the extra time away from cancer and greeting it with a cheery and grateful disposition.

I had a friend whom I hadn't seen in awhile recently ask me how I was doing. He asked it in a way that meant more than just the idle pleasantries of conversation. "Surviving," was my answer. It's not optimistic, but it is honest. To survive each day, each hour, each minute, even if it feels like I'm failing. Confront each challenge, even if it's weakly from my knees. Honor each feeling, even those most hollow and empty. Take stock of each sunset, even the bittersweet ones. Not to capitulate but first, to endure.

blackout

2012-01-18T09:52:00.000-06:00

Finally, I have a day where I don't have to fight traffic and go to the med center. An entire glorious day to be very productive while studying at home. Uh-oh.

I don't know what congress is doing (I can guess they're misguided as usual) but if they're pissing off wikipedia and google, that ain't good for med students. How the heck am I supposed to learn today? I need to see about coinfections of HIV and Hepatitis B and how that's treated. I gotta use a book now? For rapidly changing fields, those things are outdated before they even hit the printing press. Seriously, books? Sigh.

away

2012-01-14T10:06:00.000-06:00

It's been awhile since I've posted. I was locked out of my google/blogger account and didn't have time to trouble shoot it until now (finally figured it out, no thanks to google) so I'll be posting again after some fun weekend studying.

reflection

2012-01-01T06:27:00.004-06:00

It's the New Year. Society dictates that I set goals about what I want to accomplish. To quote my son, 'Meh'. My goal is large enough that I don't need anymore to look at. I looked to the past instead. I went back and looked at some of my older blog posts. A cognitive dissonance rapidly set in, to say the least. Who the hell is writing this? Why the hell is the guy writing this? What the hell does he hope to gain? Surely, he's embellishing this. But if he's not, he must've really loved his brother...and still loves his family. What lunatic would continue down a medical path after this happens to his family? He must be a glutton for punishment. I think if I were that guy, I probably would've cracked by now...............Only, I am that guy. B-I-Z-A-R-R-E.

sunset

2011-12-29T18:10:00.000-06:00

Rocky Mountain National Park

Oh noose, tied myself in, tied myself too tight

Looking kind of anxious in your cross armed stance

Like a bad tempered prom queen at a homecoming dance

And I claim I'm not excited with my life anymore

So I blame this town, this job, these friends

The truth is it's myself.

And I'm trying to understand myself

And pinpoint where I am.

By the time I get things figured out

I've changed the whole damn plan.

Oh noose, tied myself in, tied myself too tight

Talking shit about a pretty sunset

Blanketing opinions that I'll probably regret soon

I've changed my mind so much I can't even trust it

My mind changed me so much I can't even trust myself

- by isaac brock

the selfishness of grief; or, I gave all

2011-12-23T05:59:00.004-06:00

Close my eyes for a while
Force from the world a patient smile

But I gave you all
But you rip it from my hands
And you swear it's all gone
And you rip out all I have
Just to say that you've won

Well now you've won

- mumford & sons

The early phases of grief are dominated by pain surrounded by loss. A deep visceral, gutteral pain that threatens to cleave the body in two. It's dominated by a sense of shock, fury, and profound loss. But then life goes on, as that damnable axiom (under)states. And therein lies the dilemma of latter grief. It's selfish. It's not just about the lost loved one. It's about me and how I relate to the world. I want to protect what I have left but the grief still has me its iron clad grasp. How do I relate to the world while succumbing to grief? Why won't my grief just leave me alone and let me study? Why can't I just get past this turn in the road? How can I remain true to my grief while juggling being a student, a husband, a father, a son, a human being? Haven't I given enough? Why can't I just get back to living my life?
Clamoring for answers from grief is about as useful as asking my dog to solve a polynomial equation. She just lies there and wags her tail. Kinda futile, to say the least. But life demands that we keep going. My training is ever ratcheting its pace fasterfasterfasterfaster, my dad still has cancer and (hopefully) is approaching a stem cell transplant soon, my wife still lives her life, my son still needs a father.....But there ever present is the grief that demands utter and complete obeisance. It's not enough to say, 'yes, I feel the grief' and then move on. It requires of the soul to relinquish all that brings joy and pleasure. It thirsts for the very essence of my being. It's not enough for give part of me. It wants it all. And after having it all, it still is not sated. It demands even more yet.

the loneliness of grief

2011-12-22T05:52:00.001-06:00

     "Why didn't you tell me it was this bad?" I asked my wife. "I'd like to hope that I was at least somewhat supportive, even if I didn't understand at the time." The time to which I was referring was an incident some years back. My wife had lost someone incredibly close to her in a very, very tragic way. And it was far too early in this person's life. He was about my son's age. About six months after the death, I remember seeing her very....well, unmotivated for anything in life. (There's that word anhedonia again.) At the time, I had no idea what she was going through. How could anyone know what this is like until they experience it?
     And my wife's answer will stick with me because it's true. I don't want it to be true and I'm not sure when, or even if, I would've figured this out on my own. But the longer it sits with me, the truer it gets. "I didn't tell you because you couldn't understand......and in the end, there's no one to go through the grief with you except yourself." Tears began to well up in both of our eyes. "You're there and it's only you and your grief alone. No one else."
     Don't get me wrong. I have some wonderfully caring people who wouldn't hesitate one moment to help me out. And I greatly appreciate it and they do help out in their own ways. I've leaned on more than a few different shoulders. But my wife is right. There is The Path of Grief that you and you alone walk down. No one else is able to accompany you there. You can relate to others about the pitfalls and dangerous spots. You can ask about their own stories on that path. There even may be similar twists and turns on that journey. But in the end, on that dark path is you and your grief alone.

finish line

2011-12-21T17:58:00.000-06:00

In the wilds of a Colorado backcountry trail this past summer, the soles of my hiking boots decide to separate from their respective shoe bodies. Thank goodness for duct tape. It's MacGyver'ed me out of many a backcountry problem - torn tent on a stormy evening, blister on the feet, burn on the foot, ripped backpack, etc.

Upon finishing exams - 6 in 10 days, and successfully, I might add - my particular soul also felt its own separation while coping with newly discovered territories of grief. Ravines, cliffs, and caves of impenetrable darkness that I never knew even existed. Existential silver, sticky, tensile stuff is holding me together. Strong stuff, and that's a good thing because I sure need it. I sure hope it doesn't give out. But then, duct tape never does give out, does it? Because you can always whip out more.

2011-12-20T17:52:00.000-06:00

     On my way to yet another exam, the traffic was flowing freely, much like the tears that ran down my face. As usual, they came out of nowhere. Before my morning tea had even wet my lips, memories of my brother haunted my waking state. Not just tears. Gut wrenching sobs with fists full of destructive anger. No bones broken. The bathroom tile is sturdy.
    Exam? How am I going to take an exam like this? Ariving early, I am in no mood to be around other students. Without any conscious thought, I walk over to MD Anderson. My feet chose the path for me. I pass through those familiar doors not as a brother, not as a son, not as a doctor-in-training. Not as anything other than the most broken parts of myself.
     Where to go where eyes streaked red with tears (and stress) will not garner attention? The chapel. I haven't been in there since my brother was offered the choice of "going down swinging". I sit one seat over from where I sat on that ruinous day, almost as if that old vestige of me was still sitting in vigil behind the phantom of my brother slumped over in a wheelchair while the memory of our mother is crumpled over him.
     What do I do now? I scroll through my brother's iphone. (It will always be his iphone, no matter how much I use it. It's become a talisman of sorts.) I come across a guided meditation on grief. Seems as good a time as any. Shortly into it, I'm instructed to imagine a guide. Someone to help me on this path. Of course, my brother comes to mind. Thoughts and emotions stream out of me rapid fire. 'How am I supposed to do this? Why did you die? Why the pain? Why did you have to die like THIS? And finally, I miss you.'
     And in return, I receive no big brotherly advice. No words of encouragement. No solace. His response is, 'how do you think I feel? I lost everything.'
    'Yeah, I know. I know." I dry my eyes, take a deep breath, and wander back over to my school to take an exam.

2 down, 4 to go

2011-12-10T11:18:00.000-06:00

75 questions over diagnosing diseases based solely on physical findings. Unfortunately, "I need to run some tests" was not in any of the answer choices.

1 down, 5 to go

2011-12-09T01:26:00.001-06:00

Ugh. 101 questions over psychiatry. That didn't go well. And I'm going to go out on a limb that the class average sunk right along with mine. We'll see.

a not so subtle metaphor

2011-12-08T13:24:00.000-06:00

By all conventional wisdom, this monarch caterpillar shouldn't be. Frost has lightly blanketed my garden on multiple nights, winter starting the decaying process of the butterfly weed upon which it depends for sustenance. Surprisingly, I saw at least a dozen cats yesterday and figured last night, the coldest yet, would be the one to send them off gently into that cold dark winter night. Somehow this one endured. It shouldn't be. It should be in Mexico overwintering in warmer climes or it should be dead. But it's not. It's stuck here in my garden with the dying butterfly weeds. It's not where it wants to be, if ever a butterfly could want. It's certainly not where it's supposed to be based on the migratory patterns. An existential crisis if ever there was one. It must struggle to endure its dying source of nourishment. It must find an enclave protected from the elements in which to create its chrysalis. It must endure until weather warms and favors growth over decay. And finally, it must emerge out the other side transformed into something else. But first, to endure.

bereavement

2011-12-06T10:21:00.000-06:00

III. Bereavement
     As death of a loved one is filled with anguish and pain it should come as no surprise that grief is one of the most painful human emotions. It is not clear how long grief should last (even if the category of 2-6 months is currently popular).

     The final lecture from my Behavioral Science class this block was about grief. How appropriate. And the above came from the reading. The two to six months part is laughable to me, as it was to the psychiatrist who gave the lecture. "My dad passed away during my residency and it takes a lot longer than 2-6 months. I'm not sure where they got this number," she informed us. The lecture then delved into how we as physicians need to try to distinguish appropriate grief from a major depressive disorder in our patients. A very real and substantial part of me appreciates the contributions of a medical model of looking at the darker aspects of moods. It has utility and it has value. I've seen what happens when depression goes untreated and results in suicide.
     But as I read more and more about grief vs. depression, I began to think that there's something lacking in substance to the medical model. Medicine seeks to treat or event prevent diseases. If there's a broken bone, we reset the bone, immobilize it and allow it to heal properly. For viral infections, we administer vaccines to eradicate the scurge of polio. Antibiotics have made rheumatic heart disease a thing of the past.
     But how does that work for someone's psyche? The psyche is broken and we seek to fix it. There's a certain material logic to it. If someone is suicidal, we'd certainly like to prevent that. But taking the "fixit" analogy can cut the journey short when 'fixing' equals 'happy'. There is something quintessentially dark about the human spirit. Jung called it the shadow side and the older I get, the more I think there's something to it. Our society places way too much emphasis on being happy or content as the goal of life. Pain avoidance, I suppose. There's even a whole body of medicine trying to link positive moods with life extenstion, nevermind the countless self-help books on being happy or positive. But life is more than the number of days. Don't believe me? Name any great story that has endured the test of time. The overwhelming majority involve soul wrenching pain and suffering. Very few are happy-go-lucky stories. Greek tragedies, anything by Shakespeare, you get the idea. Yes, there may be hope and triumph involved but at the base is still suffering. There's a reason for that. Every single human being will be faced with it at some point in their life. It is part and parcel of the human condition where literature and philosophy have as much to say, if not more than medicine has to say.
     So I think about that lecture and how I approach that from my own experiences and how I will (probably) approach that with my patients down the road. And at the end of the day, I do not choose to differentiate between appropriate bereavement and major depression. They seem one and the same to me, a part of the human condition with artificial labels.

il faut d'abord durer

2011-12-01T16:28:00.000-06:00

Hemingway was known to sign personal letters with the French phrase il faut d'abord durer. Idiomatically, it translates as "first, to endure". It's been my motto ever since my brother died. And it's a hard axiom for me. I always enjoyed excelling. Being above average was fun for me. In football, I played to win. And you don't get into med school by being middle of the road. So it's a hard pill to swallow to set my sights at this point on merely surviving. It feels like I'm settling. But with the trifecta of med school, death, and my dad's condition.....I remind myself that it's a lofty and noble goal at this point. If I can just get through all of this intact, that's no small victory. So entering into the next round of exams, woefully unprepared, I remind myself, "first, to endure." Go easy on myself and let go of the notion of honors and be content to endure.

anhedonia

2011-11-29T16:12:00.000-06:00

Lack of desire. Devoid of pleasure or joy. In a nutshell, it's not giving a shit. About anything. In medicine, we call that anhedonia. Hedonism is to heedlessly indulge in pleasures. Throw the negative prefix 'an-' in front of it and you're left with a mental state devoid of joy. I like that term. And usually, I'm not one to be partial to fancy medical mumbo-jumbo. We make up all sorts of ridiculous and pompous sounding terms like using erythematous instead of red. But anhedonia, I can get behind because it describes my mood perfectly.
And I'm not sure why it took me awhile to understand that term and be able to apply it to myself. This summer while studying grief, research suggested that the depression phase of the Kubler-Ross model of grief peaks at around five to six months. And sure enough, it's been six months since my brother passed away. When I read that, I envisioned the pain of grief getting worse. But that's not it. Not at all. Tears are mostly gone now. The everpresent anger is now a memory of the past. But in many ways, what replaced it is far worse in it's subtlety and devastation. Gut wrenching anguish is replaced by emptiness. It's a void that insidiously covers your soul. It's not caring whether I stare at a wall or have my nose in my books. It's utter and complete apathy. It robs you of your desire for anything be it worthy and noble or simple and sweet. And you don't realize it until you are too far along into that long dark night of the soul. Anhedonia.

pre giving of thanks

2011-11-19T17:22:00.000-06:00

"Open up and say 'ahhh'." We're all familiar with that routine at the doctor's office. But you ever try it with yourself in the mirror trying to see your own tonsils? Not as easy. With my pen light and a knife substituting as a tongue depressor I was able to manage it early this morning. In doing so, I have really good firsthand knowledge of what an overgrowth of Streptococus pyogenes looks like. It's better known as strep throat and even though my case wasn't a typical presentation, it made me suspicious enough to drag my infirmed body to the doc on a Saturday. I knew there had to be something more devious at work on my throat than a common cold. It felt like I was eating shards of glass everytime I swallowed. Needless to say, studying (and blogging) have been out of the question. It was so painful I couldn't even sleep. Heading into Thanksgiving, I'm thankful for the people that developed the rapid strep antigen test, the NP who was willing to run the strep test even though mine was not classical, and whomever made the amoxicillin. Hopefully, I'll be able to actually study in a day or two in order to make up for all the lost time. Well, first I'll need to catch up on sleep.

game day

2011-11-14T16:29:00.001-06:00

In my football days, there was always at least one practice a week that was meant to simulate a game situation. Any coach worth his salt knew that practice and the actual game are very, very different psychologically. So they'd try to simulate that intensity and unpredictable nature of the real thing. Same is true with interviewing patients and taking a physical. We trained on actors who were healthy and mobile. They did their best to pretend at being ill but even when they were acting sick, it was something simple like a stomache ache from an ulcer. Acted pain and real pain are worlds apart. The patients I'm seeing at MD Anderson? They are hospitalized. And people aren't hospitalized for no reason. They are truly sick. So all that practice I did on the actors, my wife, even my dog, went right out the window when you're trying to interview a patient who's lungs are so full of fluid they have difficulty completing a sentence. Or, the patient in his twenties on methadone who's eye movements and acute sensitivity to nausea are EXACTLY like what my brother experienced. And so on. Nothing much prepares you for that except the real thing. And as hard as it is, I'm grateful for the opportunity.

first encounter

2011-11-11T15:59:00.001-06:00

     "I have a patient for each of you. One," the doctor pauses here, "I'm not so sure about but we'll see how it goes. The other is straight forward."
     He knocks on the door and introduces me to the patient as doctor which strains against any humble nature I have because it just feels cool. I figure I've worked hard enough to get to this point that I can enjoy a bit of brief vanity, even if I'm technically not a doctor yet. We're given nothing about the patient other than the last name. That's it. We're supposed to take a full medical history and give a full physical flying solo. We then report back to the doctor overseeing us with our findings. He takes us back to the patient so we can present our findings, shreds (deservedly so) our technique, educates us on a better way, and then we're on our merry way. Repeat about weekly.
     Given his pregnant pause, I went out on a limb and guessed that I got the "not so sure one". The daughter is in the room and I wait for her to finish up. Then an occupational therapist goes in and I move further toward the back of the line. As a med student, I think we're somewhere above the faucet but below the coffee machine in the hierarchy. I wait about 45 minutes which is not really any big deal for me at MD Anderson. I'm quite used to waiting here and I joked with my dad that they even keep their trainees waiting.
     I finally get the green light and I'm in the room introducing myself to the patient. One quick glance and I now know that I got the difficult patient. She has a nasogastric tube emerging from her nose. I look at the tube and notice the green fluid in it. It's obviously not to feed her. The green is the stomach fluid which is being emptied. Her stomach is swollen to the size of a large watermelon and as hard. I begin to gently question her and after many long pauses, her eyes focus on the window. She slowly raises her hand and begins waiving. I query as to whom she's waving. "My daughter," as a half smile erupts on her face. Keep in mind we're on the 10th floor of the hospital wing and absolutely no one is out there. It's more than a little heart breaking to see a cancer patient in poor condition who is hallucinating but I cordone off that part of me, at least for now. I do have a job to do. I recover my senses and conclude the interviewing part isn't going to work so I try to salvage what I can and move to the physical exam. After a very few quick parts, she says to the entering nurse, "I need to spend more time with you, and less time with him." And with that, my first patient encounter lasts about 5 minutes and is over.

sick

2011-11-09T15:44:00.000-06:00

As a kid, I got sick a LOT. I almost didn't graduate high school on time because I missed about a third of my senior year. Since I didn't like school too much, it was a sort of guilty pleasure to enjoy the missing school part, though not being sick. Now that I'm in med school, it's a completely different story. Being sick sucks. School marches on unabated and the work piles up relentlessly. Fortunately, I'm back on me feet and ready to start digging out of the hole.

language

2011-10-30T07:41:00.000-05:00

Apparently, the average med student learns about 13,000 new words in the first year alone. Not sure how many in the second but it definitely keeps increasing. The words get longer and more complex with their connotations, too. Try saying 'Membranoproliferative Glomerulonephritis' 10 times. And not content to leave it alone, pathologists had to identify two different forms so that there is a Type I and a Type II. And then you have to know the inferred clinical signs because in addition to being nephritic, is also also nephrotic. I think I'm beginning to forget simple words like 'cat' and 'dog' to be able to remember this gobbledygook.

crazy

2011-10-28T06:13:00.000-05:00

General advice from the clinical instructor (an internal medicine doc) of my last group.

"Anyone entering oncology needs to have a psychotherapist. No, I'm serious. Even though you may be normal, the clinical world in which you inhabit is not. Take care of yourself."

slave

2011-10-26T06:17:00.000-05:00

My uncle recently wrote on my dad's blog what it felt like to try to be the stem cell donor and have it fail. They spent 35 days down here, flew from Michigan to Houston twice, made multiple 70 mile round trips back and forth between MD Anderson and here, spent numerous hours in the waiting room, been poked and prodded and in all manner of ways..........and came up empty. He will not be the donor.
My response? Welcome to cancer. You bust your ass, give all you've got and then find a way to give even more, you never stop trying, battle the disease 24/7, hold onto that ridiculous yet enticing word 'hope'............and still come up short. That's cancer in a nutshell. Don't get me wrong. It's not that I'm not appreciative or grateful for his effort. I am. But what he experienced in that condensed episode is what my brother fought against for 15 months and what my dad continues to fight against for 10 months day in and day out. Yeah, cancer sucks and welcome to its world because it owns you.

the problem with hope

2011-10-24T14:05:00.000-05:00

I hate the word 'hope'. It's a cruel and bitter emotion that won't leave you alone. In meditation, one is taught to 'let go' of attachments to emotions. I can often do that with anger and grief and anxiety. In fact, I've gotten pretty adept at it. But not hope. I despise it because even if I let it go, it never lets go of me, along with its cousin of disappointment. 'Hope springs eternal in the human breast' and all that jazz. A three hundred year poet wrestled with it then as I wrestle with it now. Some things never change.
This morning right before class, I get a phone call from my dad. MDACC has already initiated the search for an unrelated donor. "They got over 900 potential hits initially. They want to narrow it down to 3 people and that should take about 2 weeks," my dad tells me. His voice is filled with hope. As a consequence, my ears are also filled with hope. But does it penetrate down and do I allow my heart to dare hope? Can we find a 10 out of 10 match in just a few short weeks? Is that possible? More importantly, is it probable and likely? Do I dare get my hopes up????

Know then thyself, presume not God to scan
The proper study of Mankind is Man.
Placed on this isthmus of a middle state,
A Being darkly wise, and rudely great:
With too much knowledge for the Sceptic side,
With too much weakness for the Stoic's pride,
He hangs between; in doubt to act, or rest;
In doubt to deem himself a God, or Beast;
In doubt his mind or body to prefer;
Born but to die, and reas'ning but to err;
Alike in ignorance, his reason such,
Whether he thinks too little, or too much;
Chaos of Thought and Passion, all confus'd;
Still by himself, abus'd or disabus'd;
Created half to rise and half to fall;
Great Lord of all things, yet a prey to all,
Sole judge of truth, in endless error hurl'd;
The glory, jest and riddle of the world.

Go, wondrous creature! mount where science guides,
Go, measure earth, weigh air, and state the tides;
Instruct the planets in what orbs to run,
Correct old time, and regulate the sun;
Go, soar with Plato to th’ empyreal sphere,
To the first good, first perfect, and first fair;
Or tread the mazy round his followers trod,
And quitting sense call imitating God;
As Eastern priests in giddy circles run,
And turn their heads to imitate the sun.
Go, teach Eternal Wisdom how to rule—
Then drop into thyself, and be a fool!

- alexander pope from an essay on man

do this in remembrance of me

2011-10-23T16:12:00.000-05:00

My dreams have been troubled of late. Often my brother is in them. Always with cancer, never healthy. Death is also present, too. They're not pleasant dreams. Pot pies have been on my menu a lot lately. And not just any pot pie. "They've gotta be the cheap Banquet ones," as my brother would say. And he was right. And still is right (can he still be right now that he's dead?). The banquet ones trump all. I didn't even realize I was eating them so often because of him until my mom mentioned she and my dad had some one night in honor of him.
And I think back. Why pot pies? They're some cheap frozen meal that can't possibly be real food. But wh am I addicted to them? When we first moved to Texas, I was only 9. Both parents worked and so during that first summer, my brother was forced to baby sit me. We had this ritual where we'd conjur up our lunch time meals. Iggy's Grub, we called our kitchen. Nothing fancy, always frozen or canned but it got the job done. Three meals, specifically I remember. Dinty Moore's beef stew. As we got older, we both considered this on par with dog food. It fell out of favor. Chicken Chow Mein, though, I don't remember him liking this one. How I wish I could shoot him an email and ask him. "Was that one we ate at Iggy's Grub?" Nevermore. And Banquet Chicken Pot Pies. This one stayed with both of us through our adult lives. Why, I don't know. But I remember reminiscing with him at MD Anderson about them. It's so bizarre how a 69 cent item is the cause of such pain and tears for me now. As I write this, I've got two in the oven cooking. And I'm going to eat them and remember both that summer when were kids and the time at MD Anderson. Memories are all I have of him now.

tally

2011-10-21T10:45:00.000-05:00

Grades are finally in and the tally is:

Epidemiology/Evidence Based Medicine - honors on the one and only exam and honors in the class.
Genetics - just a pass on the one and only exam and high pass in the class overall. Both these classes are now done. Now on to the continuing classes.
Behavior - high pass on the exam
Fundamentals of Clinical Medicine - only a pass. This class is presented very differently than the other classes and I dramatically underestimated the difficulty. Need to rectify that.
Pathology - high pass but they set the cutoff of honors at 93% so that's a hard target to hit.
Pharmacology - ditto for this one. There were a couple math problems I just couldn't figure which probably kept me at high pass.
Integrative Clinical Experience/Problem Based Learning - pure clinical based on cases we work through. Knocked this one out of the park with a straight up 100. We're also graded by the group facilitator on how we do in the group work. He told me I could've taught this class (it was mostly cardiovascular so I'd hope I could teach that after my years in industry) so needless to say I've got honors for this one.

Not too shabby for an old dude.

tails

2011-10-18T22:01:00.000-05:00

     We called 'heads' on that flip of a coin. It seems to have come up 'tails'. My uncle donated his stem cells but the count only hit somewhere in the neighborhood of 200,000. That number needed to be closer to 1 to 2 million so we're way off. They're going to try some last ditch efforts to see if there isn't some way to get the cells produced but I'm not holding my breath. It seems we're headed to the national registry so I will again make this plea.
     If you feel motivated to impact someone's life (possibly my dad's but more likely someone else's) in a very big way with very little impact on you, I would urge you to register at bethematch.org. You fill out the request online and they mail you some q-tip types of swabs. You swab the inside of your cheek and mail it back. That's all it takes for the initial steps. They then contact you if you match anyone down the road.
     And I'm sure my dad wouldn't mind hearing directly from any of y'all to encourage him in his battle. Fighting day after day after day in the face of continual losses gets more than a bit disheartening. Cancer sucks, after all.

flip of a coin

2011-10-18T04:49:00.001-05:00

Have you ever had a moment in life where your very survival was distilled down to two very real and very different possibilities? I can think of one instant in my life. I had climbed Mt. Kenya and while coming down at the very end of the trip when things are supposed to be safe and triumphant, I came face to face with a cape buffalo. I was five feet away from him and if the bull charged, there was little chance I'd survive. My climbing guide had lost his dad to a cape buffalo so it wasn't a trivial thing. For what seemed like an eternity but in reality only lasted a second or two, my existence was called into question. Fortunately, the bull didn't feel much like goring me and gave a warning snort and wave of the horns that I promptly honored. I imagine that's what life must be like for my dad right now. His brother, the donor, is down at MD Anderson again. He's in the apheresis unit again. They've given him shots to stimulate his stem cells again. And they're collecting his blood again. All to see if he's able to produce the stem cells. If he is, then my dad gets a very good chance at life. If not, and that proverbial bull rushes, who knows what will happen - will we find an unrelated donor, how good of a match will they be, how long will it take, how many complications? It seems as fickle as the flip of a coin.

pain

2011-10-17T16:48:00.000-05:00

     The proctors shuffle sideways through the tight rows and begin to pass out the exams. The last one, which is actually a two-fer-one test. A total of four versions for the test, each person gets a random version to lessen the likelihood of cheating off your neighbor. Even the earplugs are supplied by the school to prevent any earpieces that could allow for cheating. I thought the school was just being nice.
     I roll up the earplug and shove it down into my ear canal. As the spongy material decompresses against my ear canal, it's a bit like walking into a tunnel. All extraneous sounds, and thoughts, fade away into the background as my mind approaches a zen-like state. Except one sensation. There's pain in my left ear radiating up from my jaw. Right before exams started I had a tooth flare up. Bad. No time for dental appointments, I numbed it up with vicodin. I discovered that while I could NOT study while in pain, I COULD break through the fog of opiates with enough caffeine and enough will power. So each day, I'd wake up in a haze and start pouring tea into my body by the gallons, hoping that by the time the exam rolled around I'd still have enough pain relief on board while simultaneously having enough caffeine to counteract the mental fog.
     I know, I know. It was less than ideal but when your back is up against the wall, you do what you gotta do. All those rules and guidelines about not self medicating go right out the window when it's three am, you have exams, and you're in severe pain that laughs at the notion of ibuprofen controlling it. The memories of my brother were quick to haunt me, too. How many times had I watched him wait for the pain meds to kick in...waiting....waiting....waiting....ahhhh, relief. It always took about 30-40 minutes. So at three am, I'm frantically digging through our house looking for pain meds. I got them for my hiking first aid kit. They must be there. Nope. Medicine cabinet? Nope. After a half hour finally breaking out in a cold sweat due to the pain, I finally find them, pop them, and then plop myself onto the couch in front of the tv. It takes two South Park episodes on Netflix for them to kick in. Waiting....waiting....waiting...ahhh, relief. 44 minutes, just like my brother.
     Blissfully, I can fall back asleep hoping that my brain will begin to function on a higher plane by exam time at 1 pm. And so I repeat this ritual for 7 exams over 10 days and amazingly, it works. I am able to study. I am even able to drive, much to my wife's consternation and worries. And to top it all, I am able to do well on exams. I wouldn't recommend it and if I had the chance to do it all over again, well, there wasn't a lot I could do. But I can say that being visited by the specter of my brother's pain at three am is a powerful teaching moment. If I didn't already have enough appreciation for patients with pain that is not well controlled, I now have another personal level of empathy and understanding. Opiates get a bad rap because of some bad people but for the majority of patients who really have pain, they are a life saver. I don't know what I would've done without them. They got me through my first round of exams and made me a more caring doctor on top of it.

pause

2011-10-07T19:48:00.000-05:00

My third exam is done and in the bag. 100 questions over genetic diseases and all the esoteric minutia that goes along with them. I'm going to go out on a limb here and say that with a few exceptions, I will not see most of this tested material in my career. Ever. Expanding repeats, unbalanced translocations, calculating the risk of birth defects in inbred cajuns. Ain't gonna happen. Lots of grumbling about this class throughout my class. Keep in mind that med students are a bunch of hypercompetitive braniacs so grumbling is the norm. They're not used to being wrong. But in this instance, I think there's some legitimacy to the grumbling. Oh, well. Don't care. Exam is done. And like the class yesterday, this whole class is done. This was the one and only exam worth ~70% of the grade. Good riddance.

I did get my score back on my first exam, which was Behavior. Squeeked by with an honors grade by 0.4 points. Sweet. Not expecting honors on the next two. But as I said, don't care. Pass is all that matters for those. They are done and will factor minimally in the board exams.

I'm taking the evening off, instead choosing to spend it with wine, barbeque, and South Park. Tomorrow begins the studying for the real exams. The heavy weights are next week. Monday is Pathology (the 800 pound gorilla), Wednesday is Pharmacology (lots of memorization), and Friday is a tag team of a two class exam that really amounts to assimilating everything from every class and seeing how it applies to imaginary patients. It's bizarre. They only had 5 lectures in this class but it's probably the hardest and most expansive class that we have. The diverse topics range from anemia of chronic disease to fever of unknown origin to heart failure to my personal favorite, EKG interpretation. The other difference is the test is written by a pure clinician, not a PhD. I'm hoping that balances in my favor but we'll see.

ruminations & anxieties

2011-10-07T19:25:00.010-05:00

Even though he lives just a few miles away, I've hardly seen my dad lately. Exams and the lead up to them have been brutal and I've had to compartmentalize. I still try to call him at least every two or three days but even that has become more difficult. I typically would call when I'm making that hour long drive to-and-from the med center. But even that time is now packed with listening to lectures in the car. Besides, it's hard to gauge over the phone how he's doing with the waiting. First, the manic rush to stem cell followed by the brick wall of a poor collection. And now playing the waiting game.
So I honestly do not know how he's doing. But I have a decent imagination. He hates inactivity and waiting. I'm sure his mind is running through endless scenarios of "what it, what if, what it?" I know mine has. And my mine isn't content to just ask the question. It has to answer them. In the back of mind where I still have a bit of reserve brain power, I've begun to wonder, 'what about that new clinical trial with genetically engineering the patient's own T-cells?' Before, it was a moot point since we had a perfect donor match. It wasn't necessary. Hopefully, that still holds true. But now? I don't put much stock in hope. I tend to put my stock in Plan B, just in case.

2011-10-07T12:13:00.000-05:00

Second test done. It was only 56 questions. It was mostly over stats and who doesn't enjoy being tested over stats? The only good thing I can say is that this class is over. It was a short class with only one exam worth 70% of our grade. Good riddance.

first

2011-10-05T22:28:00.000-05:00

104 questions over behavior and my first exam is in the bag. Not sure how I did other than I passed and that's good enough for now. Line'em up and knock'em down.

highs

2011-10-04T19:25:00.000-05:00

Tight with strain, my eyes easily glaze over at any chance they get. Subsisting on fast food, I've abandoned exercise for a bit, and in all likelihood am drinking too much. Check that. I told my wife, "yes, I know I'm drinking too much. If I'm still doing it in 10 days, then you have cause to be concerned."
And yet I emailed my wife just the other day, "in some weird, twisted strange way, I'm almost enjoying myself." I started with real patients last week and this week marks the finish of the first leg of a sprint begun in August. It's exam time. The first of four this school year. And they don't mess around. Seven exams in ten days, probably in the neighborhood of 600ish questions in total. I'm not sure I'd ever want to do this whole training gig again but I must admit that I am thrilled at the opportunity. I do not regret it one bit. I vary between thoughts of "oh shit, I don't know anything, I'm screwed" to delusions of "meh, it won't be that hard." It ain't easy. And nevermind all the obvious emotional associations of what I'm studying being being inextricably wrapped up with my brother and dad. But despite it all, I love the fact that I'm doing this. I feel alive.

the lows

2011-09-29T21:21:00.000-05:00

     I walk the half mile from my school to MD Anderson. It could be the 3rd time or the 300th time. I lost track long ago. I call my dad to let him know I'm on my way over. "I'll update you when you get here." Uh-oh. That can't be good. Normally, I get some sense of what is going on. But nothing this time. And we haven't even met with the stem cell doc yet. The donor, my dad's brother, is running into a brick wall from the perspective of a donor. His platelet counts are too low to donate.
     But really, that's only half the problem. It's compounded by the fact that he hasn't been able to muster enough stem cells to even hit 1 million cells after a good week of attempts. They want 4 million cells. They can get by with 3 million but even that has some qualifications. You can imagine that if you collect all 3 million at once, there'd be less stress and handling on the cells. But if takes 6 collections, well, some of the cells aren't going to be viable so you don't really have 3 million live cells. It'd be like going to the grocery one item at a time or all at once.
     So they sent him home to recuperate. The hope, and I mean hope in the philosophical sense of the word as this is anything but a diagnosis, is that his brother battled a cold a couple weeks back and perhaps that's limiting the response of his bone marrow to kick out enough stem cells (and platelet cells).  We shall see in due time. If that's true, then he should give a good collection in a couple of weeks. If not, then it's time to hit the national registry to attempt to find a match there.
     If you're like me, then you may be wondering why they don't just go directly into the bone marrow to collect the cells they need. I asked the stem cell doc that very question. First, if they can't collect peripherally via the blood, then the collection tends not to be adequate from the bone marrow.  One predicts the other. But equally important is the fact that stem cells collected from the blood tend to produce better outcomes (at least in MDACC's hands) than stem cells from the bone marrow.  So it'd be better to collect peripherally from an unrelated donor than from the marrow of a related donor. As to the why, that's complicated and I'm too tired to go into it now (exams start next week for me). Besides, it'd be esoterically boring to all but the most hard core science geek. I'm going to go drink some boxed wine and watch South Park before drifting off to sleep. It's been a long day.

be careful what you ask for

2011-09-24T09:34:00.000-05:00

     Checking my email, I notice one in my school account that's from an unfamiliar name. I open it and it's from the doctor I will be paired up with to start practicing my History & Physical on real patients. No more actor patients. Well, we'll still use them for other stuff. But, at least in part, it's now time to move onto the real deal. I requested an oncologist. Normally, they don't like to take requests but the course coordinator knows my story and is more than willing to help me out. So I get paired up with a breast oncologist at MD Anderson.
     In the email, he's giving me the time and date of our first excursion. He asks me to show up at the hospital wing of the complex. I offer to meet him at his clinic thinking it would save him a trip. Nope, he informs me that the patients I will be seeing are inpatients. That means they're hospitalized. These patients are sick. Of course, anyone with cancer is sick but they're not hospitalized without reason. So I'm skipping from playing doctor on actors to real cancer patients in the real hospital. Couldn't we just start with a patient that has the sniffles or a sore ankle? Nope. These are patients grappling with a life and death disease. I'm terrified while reading the email. But I asked for this.
      I immediately flash back to my brother's countless visits to the clinic. Often, the visit would start off with a resident. It is a teaching hospital, after all. And some of the residents inflicted emotional pain on my brother by their ineptitude. They weren't mean. They just didn't know what they were doing. Inexperienced or stupid? In the end, it doesn't matter to the person on the exam table.  That patient is scared, in pain, confused, and frustrated. Violating that Hippocratic oath, albeit unintentionally, they inflicted harm upon the patient. I watched it first hand and it infuriated me. I even came up with a rule that I'd tell everybody, "don't ask the resident any medical questions. None. Ask the nurse, ask the PA, ask the doc, but for the love of Pete, let the resident get out of here with doing as little damage as possible."
     I'm not a resident. I'm even further down the hierarchical ladder. Right above mop bucket is medical student. That's me. That will now be me on the side of that doctor-patient dynamic. It's scary. Damned scary. All I can do is trust myself. Trust that little unconscious part of my brain that takes over during these moments. It happened when I played football and it seems to happen in medical situations, at least so far. Something just takes over and does the right things. That, and practice like hell with my wife to insure I don't inflict a moment of pain on these patients. I watched it happen on my brother and I'm going to do my damnedest to make sure it never happens to one of my patients on which I'm learning.

waves

2011-09-21T18:39:00.000-05:00

I was sitting in my backyard, the temperatures surprisingly nice given the brutal and record breaking summer we had. I had spent the Saturday morning studying, had lunch and then mowed the yard. Nothing to do now but relax with satisfaction of a good day. Drink a beer, observe the butterflies, and periodically move the sprinkler. It was good. But then out of nowhere, unheralded and unanticipated, came the image of my brother. This was not reminiscing about good memories. This was the dirty and difficult process of dying. All the images, all the emotions, all the decisions, all the struggles. It's like they were yesterday. The waves keep coming over me again and again. I'm at a loss of what to do so I write.

thanatos

2011-09-18T05:39:00.002-05:00

     That case before? Yup, it was cancer. Started out as colon cancer, went into remission, but then she developed Stave IV ovarian cancer. Turns out her family had a condition running through the gene pool called Lynch Syndrome (or hereditary nonpolyposis colorectal cancer if you really like medicalese). They get colon cancer along with endometrial or ovarian cancer. And to be honest, it wasn't that emotionally hard reading all the medical stuff. It wasn't even that hard to role play giving the bad news. I've done that with my both my brother's and dad's diseases. It kinda loses its punch when it's just an academic exercise.
     But at the end of the case, we all piled into our lecture hall to watch a video interview. A different patient at MD Anderson who had Stage IV ovarian cancer (translation - terminal) agreed to be interviewed about end of life issues. It was less than 15 minutes and I counted the number of times I had to physically bite down on my tongue to keep tears from spilling. So many of the same struggles and issues that were thrown at my dad and brother. It took three times chomping down on my tongue to create physical pain out of emotional pain. Then a rather well esteemed chaplain and rabbi at the medical center got up to tell some stories about end of life. And through them all, he's encouraging us to drop the notion that because there's nothing medically, meaning curatively, that can be done for patients, we still have a role to play. And perhaps it's a role that only a doctor can play. Our relationship with the patient is unlike any other.  And if we judge our success solely by restoration of health or not, we're going to be sorely disappointed, not mention at a high risk for burnout. But if we treat to validate and heal the patient's spirit, that's a different measure of success. And I'm listening to all his stories about redemption and hope and peace in the face of death and I'm struck at how that wasn't there for my brother, at least from where I sat. It was a nasty and brutish and above all, painful death. So if I measure success by peace or healing of the spirit, did I fail him?
     And so, too, did the doctor fail him in that regard? We all tried to move my brother towards acceptance but there is something about the aura of a doctor. Their word carries a different weight than a family member. But I remembered back to a line the doc said to my brother that rings in my head clearly, "so what I'm hearing you say, is that you'd rather go down swinging." I can picture the doctor saying it, hear his voice, and see his body language like it's on a screen before my eyes. And my brother nodded his head 'yes'.
     We're taught to respect the patient's autonomy. They have the right of self determination that trumps most anything. But as a physician, at what point are we feeding the patient's mistaken belief of a cure? There was nothing medically that supported the last couple of treatments my brother engaged in. And from the doctor's point of view, I guess he thought that it was more important that my brother die fighting as he wished. There was absolutely no doubt that's what my brother chose. I don't know that's what he really wanted. But I don't want to second guess my brother or sit in judgement of his life. Far from it.
     I'm torn as to what I'll do when put into that situation. I can't see myself encouraging someone on when there is no hope medically. But can I see myself encouraging them to heal their relationships, to do what final things that truly matter, and to heal their soul while there is still time, when they still wish to fight against any hope? At what point is the specter of the Grim Reaper of Death really the Angel of Mercy? And did I really go into medicine so that at times I could be the Angel of Death?

update

2011-09-16T18:21:00.000-05:00

I haven't had time to be with my dad much for his MD Anderson visits. It feels weird but I've busy with school. Since the ball is now rolling for stem cell transplant, those are becoming more frequent again. As such, I'm not exactly clear on the protocol they'll be using because it can vary a bit depending on the patient. But a LOT goes into a stem cell transplant. You don't just walk up and say, "here, pump some of dem bone marra' cells into me."

First things first. The donor. And first, the donor has to be cleared for takeoff. My dad's brother underwent a series of tests this week and from what I understand, a LOT of waiting, and waiting, and waiting. Welcome to MD Anderson. And the tests came back as a 'go'. So now, he's receiving multiple daily doses of Neupogen to tell the stem cells in his bone marrow to start replicating. And replicate they shall, even to the extent that they start to spill out into the blood. The advantage of that is that he doesn't have to have his actual bone marrow harvested so it's a lot less painful for him. Just a stick in his arm. They'll start the collection process next week. They collect daily and count the number of stem cells they get. They continue to draw on him like an ATM until they hit somewhere in the neighborhood of 4 million cells.
Next, the patient. Like the donor, the patient also has to be cleared for take off. That means imaging in the forms of a CT, a PET, and x-rays to make sure he doesn't have any hidden solid tumors that we didn't know about (you know that for them to run that test means that happens enough to people to warrant the test). After that are some various odds and ends stuff that are really quite time consuming. It's basically a full time job. Among those, I have to imagine, is putting in a central line. Usually, that means putting a catheter in the vein that runs right below the collar bone, appropriately named the 'subclavian vein' because it runs below the clavicle (aka collar bone). That's there to infuse the chemos, the stem cells, the rejection suppression regimen, antibiotics, antifungals, antivirals, and the multitudes of blood transfusions that he'll get. All those tests and processes start for him next week.
Then the fun really begins. First, they'll hit my dad with a dose of Rituxin on the 27th as an outpatient. He got that with chemo before and other than some flu-like symptoms for a day or two, it's pretty mild with respect to side effects. I'm not sure if he'll get another dose of Rituxin a week later, again, I haven't seen the full protocol they'll be using for him. Then after that comes the nasties. These are the traditional chemos that cause the nausea, chemo brain, thrush, and all-around-feeling-like-shit. Multiple days with multiple infusions. At that point, he's in the hospital and he'll get the stem cells from his brother. That date is not yet set but I anticipate sometime the first or second week of October.

extrusion of pain

2011-09-14T21:26:00.000-05:00

Monday morning. Brand new week. I took a jog in the morning sun before the thermometer had a chance to flirt with triple digits. I don't particularly like running. In fact, after about the first mile, I pretty much hate it. But I need to exercise and I need something mindless. So I go for a Monday morning run. Exercising means music and I crank it up. And out of the blue, a line from a song hits me like a blow to the stomach.

Suddenly, you were gone
from all the lives
you left your mark upon...

The waves of grief and sadness have been flowing over me with greater occurrence of late. Sometimes, they are triggered by events that warrant anticipation or expectation. Holidays, birthdays, special occasions. Those I can handle. I expect it and brace myself for the emotions. It's the little ones that creep out of nowhere, like a predator stalking a prey that is unaware of the danger lurking around a corner. Sometimes elicited by a song, sometimes by a dream, or many times by nothing at all. Those are the ones that hurt the worst. And they're becoming worse. Like running while tears come down your face. Visions of my brother's final days flash through my mind. Prognostications of something going horribly wrong with my dad are right behind them. Crimeny, I'm out there trying to clear my head before going to school. Apparently 'clearing my head' is permission for something else to take that vacancy. And then another song shuffles through the iphone of my brother with these lyrics

For my father and my brother
It's too late
But I must help my mother
Stand up straight

That's it. Screw this. I'm done with running and am actually looking forward to school by now. Exercise has done anything but unwind me. I drive the 33 miles down to school for my group work where for two hours every Monday, Wednesday and Friday, eight of us, under the tutelage of a doctor, unravel a case and practice how to be doctors. Pieces of information are fed to us slowly with probing open-ended questions so that we can hone our skills at each stage of the diagnosis and treatment. This case? Patient comes in with fatigue and unexplained weight loss. After identifying the "problem list", we're now free to start compiling our Differential Diagnosis. There's a bit of a pause becomes symptoms so nondescript as this patient can be damned near anything. But I say, "anytime there's unexplained weight loss, especially with fatigue, you have to include cancer." As the scribe today, I write that as the first line on the dry erase board. C--A--N--C--E--R. I know damned well where this case is going and I bet it's not going to end well. I can't run fast enough to escape this one.

two flew over the cuckoo's nest part II

2011-09-12T08:20:00.002-05:00

     I came home and in my best Southpark imitation, told my son, "don't do drugs. Drugs are bad, umkay."

"Yes, dad. I know," he responded with a sense of exasperation.

"No, you don't know. I just came from a psych ward where I interviewed some poor guy who's entire future is now going to be spent cycling in between being homeless or institutionalized because he completely fried his brain. Let me tell you what can happen..."

     It was sad, really. Which is to say, a drastic understatement. The interview was subdivided up between the various students. By chance, I got the part that dealt with developmental history and substance abuse. Essentially, my questions revolved around, "tell me about your childhood" or "tell me what you drink, smoke, snort or inject." And given the case, those were the biggies. A tragic case - a dual diagnosis of schizophrenia and substance abuse. His demeanor was what is called a 'flat affect', probably from the medication working. That means he used the same monotone voice to describe the grades he got as the same voice he used to tell about being sexually abused. It was the same voice he used to tell me about the cocaine he used to make the pain go away. It was also the same voice that he used to tell me of his plans to "hurt those who hurt me. I didn't want to kill them. I just wanted to make them feel the same pain as me."
     Up until the age of 12, he lived a normal suburban existence where he "didn't want for nothing. I got A's and B's in school." Then he moved from his caring aunt back to his abusive mother and step father. Shortly after, substance abuse started as did the schizophrenia. Which came first? Chicken or the egg. I wonder how much research has been done to show what impact substance abuse can have in creating mental illnesses. And vice versa. (And homelessness is clearly a mental health problem. No amount of job training is going to change that fact.) He still managed to complete high school and was on his way to becoming an engineer. And I believed him. He could rattle off dates and hospitals and diagnoses like they were written in front of him. I couldn't tell you what I did last week but I'm the sane one. Yet ask him to spell "world" backwards and he couldn't get past "w-o-r???". It was like his brain worked right up to a certain point in his life and then just stopped. No new information or thinking. And when we began to exit the ward, we waited until an orderly could get a key to let us out. I was at the back of the group and looked out at the ward. I guess part of me said, 'don't turn your back on a potentially dangerous situation.' My eyes panned across the room and saw him sitting on the couch. Despite the lack of any emotion on his face whatsoever, he raised his hand in salute and waived goodbye to me.

too much

2011-09-10T08:37:00.002-05:00

"When I add up all the things I'm supposed to do to fight cancer, and I subtract all the things I can't do because of cancer.....there's not much left in the day for me to do the things in life that I want to do." I heard this on more then one occassion from my brother. And now, I read something similar from my dad in his blog about losing his whole rhythm for life. For myself, I felt some of the same things this past summer went I went deep, deep, deep into my own grief. We are creatures of habit and when that is stolen from us, it leaves us reeling. Things that we enjoyed or took pleasure in are now bland and tasteless. Even the rising of the sun no longer holds any sense of promise. I have no encouraging words. I fight my own struggles every day. Just some lyrics from someone who lost too many people from his life and struggled with maintaining his own will to live. It's the quintessential struggle to survive in the midst of having your life as you know it stolen from you.

The way out
Is the way in
The way out
Is the way in...

Out of touch
With the weather and the wind direction
With the sunrise
And the phases of the moon

Out of touch
With life in the land of the loving
With the living night
And the darkness at high noon

You can never break the chain
There is never love without pain
A gentle hand, a secret touch on the heart

Out of sync
With the rhythm of my own reactions
With the things that last
And the things that come apart

Out of sync
With love in the land of the living...
A gentle hand, a secret touch on the heart

You can never break the chain
There is never love without pain
A gentle hand, a secret touch on the heart

A healing hand, a secret touch on the heart
Life is a power that remains
- 'secret touch' by neil peart

countdown

2011-09-08T20:31:00.000-05:00

T minus 20...
19...
18...
     I park the car, grab my luggage and find the bus to take me over to the airport. Once there, I submit myself to the rather dehumanizing airport security. And wait. Wait, wait, wait. Eventually, enough seconds tick off the clock to allow me to board the airplane. There's an almost claustrophobic feel to the closeness. All the irritating aspects of humanity seem especially exposed. The overhead luggage never fits right and neither do my broad shoulders fit into the seat. Inevitably, someone nearby is hacking germs everywhere and I think to myself, "great, now I get to inhale those things and get sick." And no flight is complete without the crying infant. I wait, and wait, and wait.
     Behind the scenes, airtraffic controllers are controlling the chaos and the pilots are going through their preflight checklist while we the passengers sit unwittingly at their mercy. By some seemingly abitrary decision that might as well come from the clouds, we are cleared to go. And something happens once the pilot comes over the intercom. Something starts to happen. The plane begins to move. Potential energy (waiting) turns into a kinetic energy (one of movement). The throttle kicks in while my body is forced back into the seat demanded by the laws of physics, and I am simply amazed at the brilliance of those mental giants who made flight possible.  The airplane parts from the ground and rises through the clouds. There's almost a magical quality to it. But of course, it's not magic. It's all vectors. A million things went into making not just that particular flight, but the general concept of flight possible. And countless failures. But we trust that the pilots know what they're doing. That some mechanic did their job despite having a fight with their spouse. That some air traffic controller double and triple checked everything despite battling some illness.
17...
16...
15...
     I felt some of that same awe of being propelled down the runway yesterday. My dad is heading to stem cell transplant. It really is happening. Things are beginning to move. The waiting is nearing an end. There is a sensation of being forced back into the seat. Gravitational forces take over. It's all vectors now. The way things move are no longer within our control. But what about....??? Those questions never end. At some point, they are answered with "MD Anderson is THE best." Intellectually, we know that to be true. But still, there is that crushing doubt that exists. Yet it exists simultaneously in that same space as the awesome notion of replacing someone's stem cells with another human being's. It's Mary Shelley's Frankenstein writ large. Or, her alternate title, A Modern Prometheus. They are truly stealing the knowledge of fire from the gods, or the forbidden fruit from the tree of knowledge. What religion, or even humanistic philosophy, does not place value on the sanctity of blood? My dad's blood type? Gone. It will soon be his brother's.  All the immunizations that my dad received as a child, as an immigrant, as an adult. Gone. They will soon be his brother's. All the abilities and susceptibilities to the various colds and bugs that afflict some but not others? All the immunological memory to infections in the past like chickenpox? Gone. They will soon be his brother's. In exchange for eating that fruit, there is another chance at life.
14...
13...
12...

differential diagnosis part II

2011-09-05T17:19:00.000-05:00

3 eyes of newt
3 hairs of a border collie
3 dashes of powdered bone
3 eggs from a robin
3 berries from a holly

Under the light of a full moon, boil the ingredients and stir clockwise precisely 30 times. Take 3 draughts of the brew and stare into your crystal ball. Ask the spirits in a slow and steady voice, "wwwhhhaaattt ttthhheee hhheeelll iiisss gggoooiiinnnggg ooonnn???"

That might as well be what we do for my dad at this point. Seriously. To recap. He finished 5 rounds of chemo, had improved substantially, and right before his six round, his counts plummeted inexplicably. His neutrophils went to zero. His total white blood cell count also dropped. His red cells and platelets dipped ever so slightly. But a week later both his platelet and red blood cells looked good. So whatever was happening was specifically hitting the white blood cell population, especially his neutrophils. His bone marrow confirmed that he did NOT have a new leukemia, a recurrence of his CLL, or myelodysplastic disease. Besides, in those diseases, his blood counts would've looked differently. But hey, everyone is different and you're never certain how a patient is going to present. So to be sure, you look at the bone marrow and that confirmed it. So that left the possibility of an autoimmune reaction where his body attacked his white blood cells for some reason or a virus. They just posted his virus results online and they were negative. And there's no real definitive test for an autoimmune reaction of this nature. There's one suggestive test and my dad's results weren't even close to suggesting that it was that.
So for everything on his differential diagnosis, we came up with nothing. It's possible it was a virus that we are unaware of having this effect. It's still possible it was some sort of acute autoimmune reaction. It's possible that it was the phase of the moon. But we're certain of nothing. Medicine is like that a lot of the times. At our current level of ignorance, the disease processes are just too complex and too numerous for us to be able to understand it all. So, you take a step back and ask, "how is the patient doing?" Well, he's a bit more fatigued than usual and in a bit more pain. But who knows why. We have a match and there's no point sitting around hoping his neutrophil counts return. The cancer will come back and some point. It's only a matter of time. And besides, the goal of stem cell transplant is to first obliterate the patient's bone marrow anyway. File this little episode under "$*#($%)*" and put it behind you. So you move forward. There's not the luxury to sit and ponder what might be happening. The donor, my dad's brother will be down here in a few days to begin his part of the process of donating his stem cells. We're not sure when my dad begins. He has a visit with his leukemia doc on Wednesday and then the stem cell doctor in three weeks. I suspect things will start to happen pretty quickly after that.

differential diagnosis - part I

2011-08-31T17:21:00.000-05:00

     When encountering a disease like cancer, there are so many possibilities that can be encountered, that it can be mind boggling to the patient. When the course changes paths, it can leave the patient saying, "what just happened here. I thought we were doing A. Now you're telling me we're doing D. What happened to A, B and C?"
     And perhaps physicians don't do as good a job as they could at educating the patient about all that is going on. But to be fair, the situation can be so complex, that there isn't any real good way to reduce it to layman's terms without grossly oversimplifying. It's a tough balancing act but let me try to explain where my dad is at and why he's left in the lurch, so to speak. It all involves the concept of a 'differential diagnosis'. So first, I need to explain that conceptually. I'll go into the specifics with my dad next.
     Whenever any patient presents, the first thing we're trained to do is to begin composing a differential diagnosis. That's really just a list of all the possibilities specific to the situation. For example, say little Johnny comes to the pediatrician with chest pain, a nasty cough, and all around just feeling poorly. At the top of the differential diagnosis would be some type of respiratory infection, maybe pneumonia if it's really severe.  Down the list would be all sorts of other potential problems that are less likely but still possible. We treat and rule out the most common and obvious causes first. Tuberculosis is possible but not at the top of the list. Now let's say that a 60-year old Johnny who's been smoking for 40 years presents with the same symptoms. Given the patient, our differential diagnosis just changed. Yes, we'll still include respiratory infections but now our suspicion has to include some potentially cancerous lung mass. Or, possibly, there's an infection there on top of some other disease that has weakened the patient and made him more susceptible to the infection.
     So how does the doc even begin to communicate possibilities as wide and divergent as cancer and a simple viral infection? One could lead to death and the other could mean being home sick for a few days. Kind of a big difference there. So as physicians, we're trained to keep our poker face on. We run tests, tests, and more tests and begin to tick things off the differential diagnosis list. And because some diseases require treatment quicker than others, we don't have the luxury of waiting until we're 100% sure.  The threshold of certainty is much lower in the real world. Someone with acute appendicitis needs an answer pretty danged quickly. They don't have weeks to figure it out. But sometimes those tests can indeed take a lot of time. And to be honest, when a medical team is chasing a viral infection and then cancer, it can appear as if they have no clue what they're doing. It'd be a bit like going to an auto mechanic for a flat tire and coming out needing a new transmission. And sometimes, that probably is the case. The doc missed something critical and really is clueless. (I doubt that to be the case with my dad.) I won't pretend that doesn't happen. I've seen it first hand. But even when the team is incredibly competent, it can leave the patient feeling frustrated, confused and filled with uncertainty as to what is going on. You kinda throw your hands up in the air and frustratedly ask, "is anyone in charge here?" In the second part, I'll do my level best to read the tea leaves and guess at what my dad's doc had on his differential diagnosis list and what all that means.

one flew over the cuckoo's nest - part I

2011-08-29T08:29:00.000-05:00

We followed the signs to our assigned room. To enter through the doors, you had to push a button. To go back out the door, you needed a key. These weren't designed to keep people out. These doors were designed to keep people in. The final door had a sign that said,

CAUTION - HIGH RISK OF ELOPEMENT

Ooookkkaayyyyy. They escorted us into a room and a psychologist came in and briefed us. We were in one of the county psychiatric hospitals. They had a volunteer patient that was going to come in. The psychologist would interview the individual to demonstrate what our lecture taught us - how to interview a psych patient. Unlike our actor patients, these were the real deal. And unlike our actor patients, there's no set script you can follow. They're psych patients. Who knows how they'll present. As one of our lecturers told us, "I don't consider that my day has started until I've had a patient storm out of the room and slam the door on me." It's a bit of a mystery as to why our first patient encounters are with hospitalized psych patients but, oh well. Sink or swim time.

We hear a key in the door (wait, are we locked in this room?) and it opens. A woman takes a half step in the room and her eyes quickly pan the conference room. There are 14, count'em 14 doctors-in-training in white coats sitting around a table. Not exactly a welcome sight for anybody. I know that I wouldn't want 14 people assessing me, especially inexperienced students. In less than a second, she shakes her head sideways, utters, "no way" and scurries out of the room. That's encouraging.

The psychologist leaves the room and catches the patient. We wait a few minutes. We hear the key in the door again (this door really does lock automatically to keep people out of this room) and the psychologist brings in the patient. She nervously sits down and proceeds to be intereviewed. About every two minutes, she puts her hand over her mouth and mutters under her breath, "I need to get out of here." After the psychologist concludes the interview, she turns to us students and asks us if we have any questions we'd like to ask the patient. While her words still hung in the air and certainly before anyone could even begin to formulate a question, the patient said quite adamantly, "Uh-uh. I'm gone." And she stormed out of the room. I guess our day had officially started by the criteria above.

The psychologist without missing a beat turns to us and we start discussing our clinical observations. After the discussion, the psychologist says to us, "Oh, and her diagnosis? She's paranoid schizophrenic. I did not know that until after the fact since she's not my patient." Why in the world would anyone pick a paranoid schizophrenic to volunteer to be assessed by 14 students??? I got the impression that someone was playing a very cruel joke.

tradition

2011-08-27T12:44:00.000-05:00

     Traditions are usually thought of as being good. In fact, I'm not even aware of a word that implies a bad tradition. If you break the word down, it has a long history. Coming from the now dead language of latin, the original word is 'traditio'. Not too different from our modern word. And if you look at the roots of 'traditio', it's actually a combination of two words. The first is 'trans' which means 'over'. Pretty straight forward, like in 'transcontinental' or 'transport'. It implies a moving from one place to another. The second part is the verb 'dare' which means 'to give'. So literally, it means 'to give something over' which has now come to mean 'to hand down from one generation to the next'.
     I think for my mom today, the literal meaning of 'to hand over' is much more appropriate. Today is her birthday. Last year, she spent it down at MDACC with my brother while he was getting his tonsils removed. There was still some element of hope in the eyes of those around me then. Today, she's down there with her husband so he can get the second infusion of immunoglobulins (basically, he's getting the antibodies pooled together from numerous donors in an effort to provide some reinforcements for his compromised immune system). So for two consecutive birthdays, she has handed over with hope something quite precious to the entrusted care of MDACC.

My dad has entered the blogosphere giving his own thoughts on this journey. You can read him here.

http://abe-conversationsbymyself.blogspot.com/

tower of babel

2011-08-26T06:19:00.001-05:00

So what exactly does a freshman year of med school look like in hindsight? There could be lots of ways to measure it - hours studying, amount of decreased sleep, number of beers imbibed. But the best way, it seemed to me, was recommended by my family doc. Stack up the books.

Lest you think I'm playing with forced perspective on the camera, that's an 80 pound pit bull next to it. She ain't exactly a dainty dog. While she can chomp through steel, not even her mandibulas del muerte could go through this much material. And to be honest, this isn't all inclusive either. There's no cadaver (HUGE amount of learning and memorization there) and after the first block, I rarely bought the books anymore in the interest of saving time and money. And to be fair, I did split the first year into two, though in retrospect it was definitely not a 50/50 split. For the fall semester, it was probably a 40:60 split and the spring semester was probably near 20:80. So this past spring, I was doing 80% of what the rest of the students were doing with respect to class load. Add to that my brother and my dad, and I was more than carrying a full load so I'm not scared of the second year carrying a full load. What I am afraid of is that I have to remember that pile for the Step I exams next summer. That's in addition to what I'm going to learn this year. Drinkin' from a fire hydrant, eatin' an elephant, insert your own insane analogy here.

moving target

2011-08-25T08:28:00.000-05:00

     As we left yesterday's appointment with the leukemia doc, I turned and looked at my dad. There was an expression to him that was not content to be confined to his face. No, this feeling of utter and complete perplexion was so vast in encompassed his entire being - his gaze not focusing on much, his shoulders slumped and his back bent over. He had been doing so well. His energy had begun to return indicative of him making his own blood. The sixth and final round of chemo was his "victory lap". There was then to be a break of a few months, at least enough to allow my mom and dad to spend Christmas together without any distractions of chemo fatigue or nausea.
     But then in a moment, last Friday we found out his neutrophil counts had plummeted. No sixth round of chemo until we have a better idea of what was going on. His overall white blood cell count had decreased substantially, as well. And the red blood cell count had dipped ever so slightly. Just enough to make the picture extra confusing. The PA asked my dad, "you didn't already have chemo, did you?" Because this is what his numbers would look like immediately after chemo. Only he hadn't had chemo. The numbers were supposed to be going up. Cancer didn't read the chart. His numbers went down.
     More bloodwork and a bone marrow biopsy and wait until yesterday. I'm not going to go into all the details right here and now (my studies are beckoning) and it's where medicine becomes art. Things are very subtle, very nuanced. Lots of shades of gray. I'll explain a bit later. For one reason or another (or yet another or another), my dad is no longer making any neutrophils. I don't mean they're low. I mean zero, zip, nada. He's never had neutrophil counts this low at any time in the process. And even the couple of times he did get really low, those are the times we ended up at the ER for neutropenic infections. The good news is - and yes, there is good news - we know that his CLL is not acting up because all the other counts look good and the bone marrow confirmed it. Likewise, we know that he didn't develop a different type of leukemia (not that common but it does happen). We also know that it's not a game changing addition of a disease called Myelodysplastic Syndrome (MDS). Adding that to the mix would have greatly complicated things, and I mean greatly.
     So the ship changes course for the hundredth time. Or, the thousandth time. I lost count. No victory lap of a sixth round of chemo (it would have the potential of doing more harm than good given where he's at now). No break of six months. And a greatly reduced ability to fight infections in the interim. It's stem cell transplant time. Fortunately, one of his brothers is a FULL match. That's a very, very, very big deal. FULL as in 10 out of 10 markers match perfectly. That lessens the chance of rejection substantially. He's already booked a flight down to Houston so they can begin to assess him. They need to perform a pretty comprehensive physical exam and make sure he's fit enough to donate. I would say I don't anticipate any problems but nothing has gone as planned with this disease.....
     As to when my dad starts his end of the deal, that's not clear yet. We need to wait on the results of a few more tests. And to be honest, there won't be definitive answers then either. Possibilities, maybes, kinda sorta, like I said, it's where medicine becomes an art. Depending on those, we're talking potentially sometime in September or probably October. So as my dad likes to say, "we wait, and we wait, and we wait...."

professionalism

2011-08-18T09:22:00.000-05:00

This year, we have an entire course called Behavior. Taught by psychiatrists, it's part psychiatry and part how to interact and deal with patients. We just had one lecture on the doctor-patient relationship and so of course professionalism came to the forefront. About one fourth of the lecture was dedicated to the rather obvious dictum, but apparently difficult to follow based on all the anecdotes we heard, "DO NOT SLEEP WITH YOUR PATIENTS. EVER. Even if you have to say to yourself before you go into every room, 'don't sleep with this patient', do that because it's never a good idea to sleep with your patients." And the instructor would then proceed to tell us yet another anecdote about when one of her colleagues violated that rule.

in pursuit of purpose

2011-08-17T16:31:00.000-05:00

     The conversation is always the same, only the names and minor details change. It goes something along the lines of "Your brother is in a better place. God had a purpose for his death. He was needed up in heaven. Blah, blah, blah." I always quietly bite my tongue and don't reply. I really want to rip those empty platitudes to shreds. But in the end, that wouldn't really change the way I feel.
     I thought more and more about this very common response to loss. I think it reflects an innate human need to find meaning and purpose in an event that disrupts our world view to its very core. Things we clung to no longer seem true so we try to erect the same house of cards, hoping this time it will withstand the winds. Our psyche and society has difficulty with accepting it on the terms of "shit happens." So we need to turn it into something good and full of purpose. Then we can get back to the business of living in our still intact world view.
     Only that doesn't work so well. At least for me. I believe it cuts our internal journey short and closes too many doors into our soul. "My brother is happy and in a happy place now so I can now go back to my life. Pain over." That would be temptingly easy to adopt. But I don't believe it. Not even for a second. In it's place, I adopt a different strategy. We cannot change the circumstances of a tragic loss. Buildings fall, diseases happen, cars collide, and people die. That cannot change. The only possibility is what I do with that tragedy. Do I become jaded and embittered? Do I push it down and pretend it didn't happen? Or, do I befriend the notion that pain comes in all manners and different forms? To find a purpose, I know which choice will make me a more caring and empathetic doctor, nevermind a more soulful person.
     So instead of assigning purpose that absolves us of any choice, responsibility or duty (he's in a better place, God had a purpose, etc), I decide to create purpose from my actions after the fact. That's a much, much more difficult proposition. Suddenly, I'm now responsible for growing out of a tragedy. There is no getting over it, moving on, or getting back to a normal life. The choice is a downward spiral, stagnation of a status quo, or a painful growth by befriending pain. I must create my purpose and recovery or risk falling. Scary stuff. Studying for school would seem easier at this point but my brain just won't let that happen.

summer

2011-08-15T17:31:00.000-05:00

     My summer is done. School has started, my lack of class attendance notwithstanding. I began to look back over my summer with my wife. "Wow, I didn't do anything."
     "Sure you did. You went on your hiking trip, you....." my wife tried to reassure me. But no, compared to last summer, I did very little by conventional measures. To an outsider's eyes, it would appear that I sat and watched the grass grow all the while drinking a beer or three. My wife became a little concerned at times. There's a very fine, thin line between working through grief and wallowing in it. And indeed, I did watch the grass grow. I watched the bees buzz, the butterflies flutter by, and the birds sing, all the while drinking a beer or three. And all the while, I pondered much about life and it's counterpart death. I now truly understand what it means to 'work through grief.'
      Knowing my time was short, I now intimately know what intense grief work requires. I read deeply and richly about the process of dying and living. Psychology, religion, medicine, classic literature, personal narrative - not content with any one viewpoint, I asked the meaning of dying and living from a number of authors and thinkers and doctors. I thought and thunk and wrote and pondered and meditated and cried and lashed out in anger. Dissecting a tornado, really. My own son commented the other day to my wife only half jokingly, "well I can't believe dad's memory, you know his brain ain't all here lately." So did it help? At first, I was not sure. After all, I often still feel like shit. But grief work isn't necessarily about feeling better.  And so after sorting through some more issues surrounding the impending struggle of my dad, I can now say it absolutely helped. Will I have more emotions to sort through during school? Absolutely. I am not so naive to thinking my grieving process done, nevermind the stresses of my dad's battle and my own school (med school is a wee bit stressful in its own right, even if I don't portray that). Far from it. It's not even been three months yet since my brother died. A minimum of two years for a major loss like this sayeth every single book I read, be it from a layperson or grief counselor. But I feel like I am better prepared and armed to process those feelings as they come.
     So today, even though school has started, I trust my soul's intuition and extract one extra day of summer - to sit and watch the grass grow while drinking a beer or three and pondering the meaning of life. I've earned the right to do that. And even if I haven't, oh well, experience has taught me that I will do just fine with school anyways.

storm clouds

2011-08-14T04:18:00.001-05:00

     The heat is oppressive, even for a Houston August. Concrete under the rays of the sun could cook an egg on an afternoon such as today. No hope of even a drop of rain is in the forecast. Yet my soul has been overcast with dark and sullen storm clouds. About what, I do not know. Perhaps the loss of my brother? Common sense would say, yes. That would seem rational and so I thought but deep down I should've known that it had nothing specifically to do with the loss of my brother. Deep down, the next storm is about the possible loss of my dad. My dad has remained stoically optimistic about his prospects. It's in his nature to believe that things will work out. But that optimism just wouldn't line up with my gut feeling, though. Deep in the recesses of my bowels, I knew that 10-15% mortality couldn't be the whole story. Something was missing. My gut was telling me that storm clouds were brewing on the horizon. How many and how big?
     Recently in the news, there has been much hype about a therapy for my dad's disease, CLL. My dad had seen it on tv so I was obligated to track it down and research it. Pretty remarkable stuff and very intriguing. And as I read more, I came across this quote about CLL and stem cell transplant from WebMd.com, "Cure is possible, but it requires a risky bone marrow transplant. About 20% of patients don't survive this treatment -- and even when they do, there's only a 50-50 chance of a cure." Wait, what? If no cure, then my dad is dead. 50-50?!?!? What's the real survival rate for this procedure? From what we were told by the stem cell doctor, I thought it was 85-90%?
     Into the early morning hours I combed the literature and from what I could gather, the odds of being alive 3 to 5 years after a stem cell transplant for refractory CLL is roughly 50-60%. Only slightly better than the flip of a coin. As I searched my memory, I did recall that the 10-15% referred to the initial procedure, the first 100 days, most likely. I never thought to ask long term outcomes. Why the doctor did not volunteer them isn't clear to me. Maybe he didn't want to hit us over the head on the first visit. To give him the benefit of the doubt, we had another appointment with the stem cell doctor but had to cancel due to the dying of my brother. But still, an informed patient is a better armed patient. False hope and sugar coating things does NOT help. Note to self, ALWAYS be honest with the patient.
     So, we are faced with the looming questions, what exactly are the odds for my dad? Is what I gleaned from the literature correct, or am I misreading the situation? Has the procedure dramatically improved over the past few years? Surely, it must vary according to disease and health status, but how does that relate to my dad? On the flip of a coin, could I lose both my brother and my dad in just a few years?

not so subtle foreshadowing...

2011-08-13T15:42:00.000-05:00

from Robert Fulghum's All I really need to know I learned in kindergarten

In the early dry dark of an October's Saturday evening, the neighborhood children are playing hide-and-seek. How long since I played hide-and-seek? Thirty years; maybe more. I remember how. I could become part of the game in a moment, if invited. Adults don't play hide-and-seek. Not for fun, anyway. Too bad.

Did you have a kid in your neighborhood who always hid so good, nobody could find him? We did. After a while we would give up on him and go off, leaving him to rot wherever he was. Sooner or later he would show up, all mad because we didn't keep looking for him. And we would get mad back because he wasn't playing the game the way it was supposed to be played. There's hiding and there's finding, we'd say. And he'd say it was hide-and-seek, not hide-and-give-UP, and we'd all yell about who made the rules and who cared about who, anyway, and how we wouldn't play with him anymore if he didn't get it straight and who needed him anyhow, and things like that. Hide-and-seek-and-yell. No matter what, though, the next time he would hide too good again. He's probably still hidden somewhere, for all I know.

As I write this, the neighborhood game goes on, and there is a kid under a pile of leaves in the yard just under my window. He has been there a long time now, and everybody else is found and they are about to give up on him over at the base. I considered going out to the base and telling them where he is hiding. And I thought about setting the leaves on fire to drive him out. Finally, I just yelled, "GET FOUND, KID!" out the window. And scared him so bad he probably wet his pants and started crying and ran home to tell his mother. It's real hard to know how to be helpful sometimes.

A man I know found out last year he had terminal cancer. He was a doctor. And knew about dying, and he didn't want to make his family and friends suffer through that with him. So he kept his secret. And died. Everybody said how brave he was to bear his suffering in silence and not tell everybody, and so on and so forth. But privately his family and friends said how angry they were that he didn't need them, didn't trust their strength. And it hurt that he didn't say good-bye.

He hid too well. Getting found would have kept him in the game. Hide-and-seek, grown-up style. Wanting to hide. Needing to be sought. Confused about being found. "I don't want anyone to know." "What will people think?" "I don't want to bother anyone."

Better than hide-and-seek, I like the game called Sardines. In Sardines the person who is It goes and hides, and everybody goes looking for him. When you find him, you get in with him and hide there with him. Pretty soon everybody is hiding together, all stacked in a small space like puppies in a pile. And pretty soon somebody giggles and somebody laughs and everybody gets found.

Medieval theologians even described God in hide-and-seek terms, calling him Deus Absconditus. But me, I think old God is a Sardine player. And will be found the same way everybody gets found in Sardines - by the sound of laughter of those heaped together at the end.

"Olly-olly-oxen-free." The kids out in the street are hollering the cry that says "Come on in, wherever you are. It's a new game." And so say I. To all those who have hid too good. Get found, kid! Olly-olly-oxen-free.

- Robert Fulghum, "All I Really Need To Know I Learned In Kindergarten"

return to what?

2011-08-10T08:40:00.007-05:00

School? Oh yeah, I'm a med student. School starts next Monday? Really? Huh, I guess I should show up. To most participants of this mad, fantastic journey, med school would seem a dream come true. So few get a shot at getting a chance at running the gauntlet and many work so hard for so long to make it happen. I should be grateful. And at some level I am, I guess I am. But for me, it's so much more complicated. Before I ever even got to my hospital training (happens next summer, by the way), my mom pointed out to me that the FIRST person I ever pronounced dead, so to speak, was my brother. One can never, ever unlive that. And now my dad faces his own gauntlet of stem cell transplant. Yes, it's a hope that my brother didn't have. But it's not without it's own cost. Ten to fifteen percent of the patients die right off the bat. Infection or rejection, not that it matters so much as to the cause. Nevermind the psychological toll of exchanging a year or more of one's life to the medical establishment for the hopes of a long remission. Now do that on top of grieving the loss of your son/brother to that same foul, loathsome and damnable disease. So, yeah, add the concept of medical school to that and it becomes more than just a little bit ridiculous. Med school is notoriously rigorous and stressful in it's own right, and deservedly so. But it can't help taking a back seat to the more personal issues at hand. Emotion trumps reason every time.

return

2011-08-09T20:36:00.000-05:00

Well, I'm back. I took a break and went to the woods because I wished to live deliberately. Notice that I/Thoreau didn't say 'happily' or 'cheerfully'. Deliberately. There's a difference. To take life (and death) and "reduce it to its lowest terms, and, if it proved to be mean, why then to get the whole and genuine meanness of it, and publish its meanness to the world." I took my son, as usual, for our annual summer trip to the backcountry mountains of Colorado. But this time I also took my nephew. I was not expecting a light and easy trip. He just lost his dad. I just lost my brother. How could it be anything but reducing life to the genuine meanness of it? What did I bring back from it? I'm not sure. Honestly, it's still day to day, hour to hour, minute to minute for me. Of what I'm not sure could fill an ocean at this point. The anger is gone but an aimless malaise has set in its place.
Beyond that, I'm now ready to put up the video from my brother's memorial service. His wife and son put it together. Tragically beautiful. At the memorial, I wasn't able to see much of it because I was sobbing uncontrollably. At least now, I can pause it to recover. I don't know that I'll ever be able to get through it without breaking down. And to be honest, I don't think that I want to be able to get through this without breaking down. The day that happens is the day my heart hardens just a wee bit too much for my comfort. Damn, I miss my brother.

break

2011-07-21T21:56:00.001-05:00

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

happy birthday

2011-07-20T09:44:00.000-05:00

     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.

the endless knot

2011-07-19T10:51:00.000-05:00

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?

the needs of the dying

2011-07-17T22:39:00.000-05:00

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.

what to do?

2011-07-15T05:32:00.001-05:00

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.

focus

2011-07-14T21:13:00.000-05:00

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.

timshel

2011-07-13T06:17:00.001-05:00

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

the needs of the dying

2011-07-12T22:15:00.000-05:00

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

2011-07-12T17:24:00.000-05:00

     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.

anger - the bloom

2011-07-06T17:23:00.000-05:00

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

2011-07-06T06:15:00.001-05:00

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.

anger - the seeds

2011-07-05T18:26:00.000-05:00

      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

2011-07-05T16:15:00.000-05:00

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.

the needs of the dying

2011-07-04T09:11:00.002-05:00

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.

the needs of the dying

2011-07-03T09:08:00.000-05:00

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.

pain

2011-06-30T20:40:00.000-05:00

     My brother experienced severe pain. A LOT of pain. Pain was what sent him to the doctor where he received his death sentence. So from his diagnosis until a few hours before he died, pain was ever present. I can hear people's minds running, "if that was me, put me out of my misery. I don't want to suffer." Nobody wants to encounter that kind of pain. Even our dad, in the midst of fighting his own grim battle told me that he will not suffer like that. He will elect to die. But my brother did suffer. A large part of y'all may think that was due to a failure on the part of the medical establishment. Maybe. If so, then I would share some of that blame. I accept that if it's true but I believe it to be more complicated. I replayed the scenario over in my mind. Over and over and over. His grimaces, his walk hitched up short by the tumors present in hips, his limited range of motion of his shoulder, his grunts at the end when he could no longer talk. I see these in my mind's eye like they were yesterday. I'll carry those scars with me the rest of my life. My own pain, though of a very different beast.
     At every doctor's visit, he had to rate his pain from a 0-10 scale. 0 is no pain. 10 is the worst pain of your life. It's a standard way of assigning a quantification to a subjective quality like pain. He NEVER rated his pain a 10. I finally asked him, "what would it take to be a 10? You look like a 12 from where I'm sitting."
     His reply? "I think of some soldier who has his leg blown off and is bleeding out. That's a 10 to me. I don't have that so I'm not a 10."
    "Wow." That's the only response I could muster. Trying to explain how that soldier would be high on adrenaline and shock to blunt the response was useless. He was clearly in severe pain. But not a 10 to him. It was that simple. When a pain spike hit, he would reach for tylenol, freakin' over-the-counter tylenol at "extra strength". He'd do that before reaching for morphine.
    "That's like shooting a bb-gun at a tank," was my clinical advice. "I take more when I get sore from backpacking."
    Not wanting to fail him, I strongly suggested that he try an antidepressant to assist in managing the pain. There was data at the time that some of them could blunt musculoskeletal pain, similar to the type of pain that he had. Cymbalta has subsequently been approved by the FDA for pain, regardless of depression status. His response to me? "I don't want to take a happy pill."
    So why was he in pain? Did the doctor fail him? Did I fail him? I don't believe so. The reason was two-fold. First, he disliked medicine. He took so many pills who could blame him for getting sick of all the side effects. Pills, pills, and more pills. But bigger than that, he never accepted his diagnosis. He never reached that stage. He refused to. When someone close passes, there's a natural inclination to only remember the good things about the person and gloss over the difficulties. There's a temptation to turn the memory into a myth.  The eulogy can become a mythology.
     But my brother was human. He was a good man, but as human as the rest of us. He had his own weaknesses and shortcomings. Pain was a result. Was it strength that kept him fighting and consequently in pain? Or, was it weakness at an inability to come to terms with his impending death? Harsh words, perhaps. I feel I earned the right, though, to be able to ask them. In all honesty, I don't think it's that black and white. He was in pain because he fought. He fought because he wanted to live. He wanted to be with his family. He also couldn't accept the inevitability of his diagnosis because he wanted to live. Because of that, he was gone from his family a lot while he was receiving treatment. Some of that treatment at the end would have been considered medically futile, in my estimation. But he still did them. Lots of shades of gray in there. Strength. Weakness. Will to live. Acceptance of death. Do those terms even mean anything anymore? Perhaps they are two sides to the same coin.
     So I ask those same questions of myself. What would I do? How much pain could I endure? How much strength would I have? What weaknesses of mine would be exposed? What would any of us do? And could anyone be faulted for making their choice? After witnessing his struggle and suffering, I am not so quick to make a decision for myself, or for anyone else. For him, it came down to this. He chose pain in exchange for wanting to live.

rash

2011-06-24T12:57:00.002-05:00

     This was taken with my brother's iphone. It did end up coming to me. But in order for this phone to be useful to me as a doctor-in-training, I had to wipe it clean. Reset it. Start over. In other words, I had to remove any trace of my brother from it and make it mine. All the text messages to his wife and kids. All the photos. There were some of him and our dad working. He actually looks healthier than my dad which I guess makes sense given that my dad also had cancer, though we didn't know it at the time. His songs. And his voice. Ouch. And anger all over again.
     The brief movie is from the Rush concert last week. My wife and I ventured out to Austin (sans son strangely) and the seats ended up being the best seats I've ever had, and I've been to a lot of Rush concerts. If you've never been, a Rush concert is an experience in sensory overload in every sense - the music, the lyrics, the visuals, the energy, the intensity. I felt alive. But after? That was another story.
     The lead singer wears a shirt with a self-deprecating joke of their name. It says 'RASH'.  Being a doctor-in-training, I had to have that shirt, courtesy of my wife. And the image struck me. Have you ever had a rash? And I mean a bad one. Like getting into a bed of poison ivy. Your skin is raw and hypersensitive to the slightest stimulation. Any amount of heat or sunlight brings an intense aggravation to already overloaded pain fibers. And you want so desperately to scratch it. But the itching just makes it worse, doesn't it? And that's how my anger feels now. I feel like a rash that's been rubbed raw, super sensitive to any relation to the world outside me. So the exposure to something as intensely pleasurable and moving as a Rush concert (the last time I had tickets were a present from my brother - his son went along for his first Rush concert), inevitably pulled off all the scabs and opened the blisters. The anger has begun to evolve and I guess that's something.

witness

2011-06-23T20:10:00.000-05:00

I can still remember the very end. I wanted to watch them roll my brother's lifeless body out the door and to the van. I'm not sure why. It felt a moral necessity, to be there as a witness to everything - his last pain, his last breath, his last trip out of the house. So I held the door open as they made their way out in the half light of morning. I stood their numbly not knowing what to do next. The nurse then turned to me and said, "you did a good job." That floored me. I usually don't crave, or even need reassurance. An intuitive compass, so to speak. But when she told me that, I teared up and we hugged. To hear it from another medical professional, especially one in a hospice setting, meant something to me.

pandora's box

2011-06-19T02:49:00.005-05:00

     "You realize that he gave you a gift, right?" my wife asked of me. "You learned more about being a doctor from him than any training could provide. You do know that, don't you?"
     "I know. I've thought a lot about that already. A lot." I had already run the concept by my dad. He didn't like the word 'gift'.
     "Josh didn't give it as a gift. He didn't want cancer. He didn't make a conscious decision to make this available to you. You had a choice and you made it," was my dad's response.
     "Yeah, but he allowed me to do it. He didn't have to. It had to be hard to have his little brother knowing every single bodily function about him. He didn't have to do that so he made a choice, too. Maybe gift is not the right word. I don't what the right word is, either. Opportunity sounds close but upon examination is soooo far away. That kinda bothers me that I can't come up with a word for it."
   "But it wasn't a gift."
     "I do know that when I was pouring out my heart to him, I thanked him for allowing me to walk with him. Because the fact of the matter is I did learn enormously about being a doctor from this experience. My future patients will absolutely benefit from that. So gratitude was involved which is usually the result of a gift. But you're right. Gift isn't the right word."
    So what do I call it? What did my brother bestow upon me? Something occurred. It seems a strange twisted world in which such depths of pain are required for something akin to a gift to occur. Did I have to open Pandora's box in order to learn hope? Why does it require tragedy to move us so?

....here it comes

2011-06-18T11:36:00.000-05:00

My dad visited with his oncologist yesterday and some things were said. Much I knew I already but my parents did not. That which I didn't know, I guessed pretty close. Some, though, not even I was expecting. I did this with my brother, too. I read the literature. I knew what was in store. But then I could not say anything. My brother didn't want to know the odds. Always a movie buff, my brother recalled Han Solo's line of "NEVER tell me the odds." But it came out eventually. And it feels like it's happening all over again. This time, I didn't tell my parents because I wanted them to hear it from the doctor, not from their son. I didn't want to be the one bearing hard tidings again. Plus, the doc knows a lot more than I do.
Clinical oncology is a subtly nuanced art. It has to be due its complexity and the fact that there's so much we don't know. I'll try to do my best to explain my dad's plight in understandable terms.

His cancer arises from a type of white blood cell (lymphocyte) called a B Cell. A B Cell's job normally is to fight infection, mostly by the production of antibodies (those are what you generate in response to immunizations and infections which allows your immune system to 'remember' the invader).
B Cells are produced from stem cells in your bone marrow and exist as clones of each other. They don't live very long. Consequently, they are constantly being produced and turned over. At some point, one of his B Cells mutated and formed a cancerous cell that becomes immortal. It just keeps dividing and dividing, but not owning up to any of its responsibilities as a member of the immune system. Because it just replicates endlessly, it crowds out other stem cells that are responsible for making my dad's red blood cells, platelets, and neutrophils (another white blood cell that is a first responder to infections, especially bacterial). Reduced numbers of these cells make him anemic, at risk for a bleed, and at risk of infections, respectively. We've already experienced 2 out of those 3 life threatening risks.
There are LOTS of different reasons for the immortalization process - viruses, mutagens, random mutations, etc. We don't know what causes it in CLL. Current dogma suggests that multiple hits occur such as genetic susceptibility, exposure to a mutagen/virus, and an impaired mechanism to fix/destroy the mutation. A royal flush of deadly proportions, so to speak.
CLL is broadly categorized into low, medium and high risk based on a multitude of factors - clinical presentation, blood counts, chromosomal abnormalities, genetic mutations, etc. We do know that my dad has several genetic/molecular abnormalities that put him in the high risk category. One study I read suggested that median survival time was 3 years from diagnosis for those in the high risk category. That means that half of the patients have died by 3 years. The nuance comes into play here. MDACC's data is suggesting that how one responds to their chemo regimen is also a big determinant of prognosis. We do not definitively know my dad's response yet, nor will we until the 6 rounds of chemotherapy are complete.
Time to progression is a measure of how long a patient can go after receiving initial treatment before their cancer begins to act up again. Median time to progression is a measurement in which half of the population lasts that long. Based on my dad's molecular markers, that's 6 months. That means if you were to take a population of people with a disease similar to, but not identical because each patient is unique, then by 6 months half of the people would have had their disease flaring up again by 6 months. I don't kow what percent make it to 24 or 36 months, though some patients do. We don't know why some do and some don't. That's where the response to chemo may come into play.
My dad could go 6 to 36 months after chemotherapy is finished without any major complications. Longer? I don't know. It is reasonable to then begin to expect progression of the disease in the form of infections, critical anemia, bleeds and ultimately death. There are second line chemotherapy agents but they just don't work very well.
Add all of these up and it is very prudent to begin to prepare for a stem cell transplant. Some may ask, why not go directly to a stem cell transplant? It takes time, especially to find a donor. Out of his 3 siblings tested so far, none are a match. We're still looking. The chemo buys time for that. It's also greatly improved my dad's condition. Even though he probably doesn't feel like it has improved his quality of life, when this all started, he couldn't walk more than 20 feet due to exhaustion. He's able to do much more than that now thanks to the chemo.
I would encourage everyone to register for Be The Match. If not my dad's, you may save someone else's life. The risk to the donor is almost non-existent. Boredom is about the biggest risk as all sorts of medical tests are run on you. The benefit to the patient means life. Seems a fair trade to me.
This was all a huge bomb to my parents. Perhaps I was wrong for not correcting their false expectations but what's done is done. I'm ok with my choices. Regardless, it is going to be a very rough road ahead for my dad and my mom.

So less than a month after their son died from cancer, my parents are faced with another mortal struggle against cancer. In the blog before, I suggested that it felt a lot like my brother's situation. A lot of that is true but there is one crucial difference. Stem Cell Therapy represents a curative hope. Any hope that existed for my brother resided only in his mind. His diagnosis was a death sentence. He was proffered no hope of a cure from modern medicine. That's a HUGE difference and about the only thing I have left to hold on to. Be The Match.

ready or not....

2011-06-18T11:10:00.000-05:00

     Strolling up to that expansive complex, he is waiting out front me. The valet workers are bustling back and forth rolling patients in their wheelchairs from the cars driven by their loved ones. "Hello," I say.
     "It's been awhile," he says slowly, each word pregnant with much more meaning.
     "Yeah. I just needed to step away for a bit. Needed to mull things over."
     "I figured. Are you ready?" He understands, how can he not, but in his eyes lies a future I'm not wanting to see.
     "Do I have a choice?"
     "Yes and no. Every man has a choice. Thou mayest. Or not. Timshel. You should know the story. But in so far as you are called to do the right thing, how could you walk away?"
     "I haven't even been able to get up from getting knocked down yet. I used up all my reserves on my brother and school. I don't want this to be happening."
     "None of us do.  But it is happening all the same. You do know what is in store." The last thought is almost a question but really more of a statement. Of course, he and I both know what is in store. He is the doctor side of me. He knows much of what is about to happen, even if I'm not ready to face it.
     "I know." That last reply of mine is said out of exhausted resolution. And the journey begins anew. I must figure out how to still grieve my brother while preparing for my dad's struggle.

the problem with anger

2011-06-16T22:13:00.000-05:00

What would you do if you awoke angry for no immediate reason? Probably pass it off to 'waking up on the wrong side of bed.' What about 2 days? What about 3 or 4 days? What about every single day? An anger that stains and warps everything it touches. An anger that is ever present. The rising of the sun is not a joy to behold to as it once was. It's an irritation to me. What am I supposed to do with that? Every day requires a force of will to get out of bed. I go through the motions. I go downstairs and make my tea. Last week, I'd sit outside and force myself to greet the sun while drinking my tea, hoping that the combination of sun and caffeine would improve my sour mood. This week, I drink my tea and then greet the sun by doing sun salutations, hoping that the dripping sweat and even breathing will expunge the anger. It hasn't helped but I go through the motions. I then head to workout and punish my body. On the surface, I tell myself that I'm doing it to get into shape in order to go on our annual backpacking trip with my son (and hopefully my nephew this time). That's true on the surface and certainly an added benefit. But below the surface it's really about keeping my anger from consuming and destroying me. Without that physical exhaustion, I fear I'd have far, far too many holes in my walls put there by my fists. That and two broken hands. So I go through the motions hoping that something will eventually grow that's worthwhile. Meanwhile, I'm left dancing with this anger.

eat, drink, and be merry

2011-06-15T09:12:00.000-05:00

http://diabeticmediterraneandiet.com/2011/06/15/book-review-zest-for-life-the-mediterranean-anti-cancer-diet/

The lifetime risk of developing invasive cancer in the U.S. is four in ten: a little higher for men, a little lower for women. Those are scary odds.

Scary indeed. My immediate family has already hit that mark. Overachievers, I guess. One might expect that I'd be inclined to change my diet. I go back and forth on that one. On the one hand, there is a decent amount of data out there showing that adhering to a mediterranean diet is correlated with reduced cancer rates (among other diseases). On the other hand, my brother had no risk factors. His BMI was less than 25 (a rarity in these days), no other comorbidities like diabetes, never smoked, never drank, nothing. So part of me is tempted to take a bit of a fatalistic approach. If it's there, it's there. I might as well enjoy my decadent food.

opening the wound

2011-06-14T09:37:00.000-05:00

     It's the morning just after my brother died. The hospice nurse pulls up perhaps around 5 in the morning. I don't know the exact time but the sun is not yet up. I shuttle my mom and my niece out of the room where he lies now still, never to draw breath again. I figure that my niece doesn't need to see the grissly process of the nurse pronouncing her dad dead. Shortly after, the nurse by law is required to dispose of all my brother's narcotics. I gather them all up and deliver them to her in the kitchen.
     "Wow. That's a lot." she observes as I set them down.
     "I wasn't kidding when I said that we tried everything." Hydrocodone, oxycodone, various doses of morphine, methadone, fentanyl, hydromorphone are all present as a testament to the pain he suffered.
     "I noticed there are cats in the house. Do they have any cat litter?" the nurse asks. The protocol is to wet the pills and add them to cat litter to prevent their being distributed at places like the local high school. The number of pills stacked far exceed the amount of cat litter she brought. I go find some more cat litter and then just plop onto the floor to observe the disposal. Someone has to witness it. Well, someone has to sign that they witness the disposal. I figure I might as well watch and the floor seems as good a place to sit as any. What else am I going to do? What are you supposed to do after just watching your brother die? At that point, my sister-in-law walks by and sees me on the floor with my head in my hands. Clearly, I must not look good to her eyes.
    "Are you ok? Do you need me to do this?" she asks.
    "Nah, you go be with the kids." She is moving back and forth between her daughter and son, consoling them as best as one parent can. I figure the least I can do is save her this mundane task.  My brother is dead but there are still protocols to be followed. It's just so surreal. The nurse finally finishes up and on the form I throw my scribble which passes as my signature. With the length of my last name, it became a classic illegible doctor signature long ago. On the form, I glance at the other notes the nurse wrote.
     Under "Disposition" is written the words "somber, quiet". Seems accurate. Grief has indeed paralyzed us. Under "Death Witnessed by" is written "Wife, brother." Somewhere in a county records storage, there resides a form that details the death of my brother and my signature is on it. It somehow seems a fitting and painful testament. I loved my brother deeply and did everything I could to help. And yet the knowledge of that will haunt me for the rest of my days.

2011-06-09T22:04:00.000-05:00

     Now it's time to start exploring those memories and stories that just won't go away. Some bring waves of fondness and the sorrow at the loss. Others, like this one, stick in my craw and don't dislodge easily.
     It was the night of my brother's death. He had a pain spike early in the evening.  A bad one. I did everything the hospice doc told me to do. It wasn't enough. I had two options, well three, really, if you include trying the same thing again and expecting different results. I could quickly rule that one out. I could call the triage nurse, have her page the doctor, and then wait for to hear back. We didn't have time for that. My brother was in pain. Plan B? I could do my own thing. Earlier in the day, the nurse pretty explicitly told me that the doc definitely didn't like my way. The concern was rather strange and possibly not fully communicated but came down to a "toxicity issue with chronic use". This wasn't going to last long enough for long term toxicity to be an issue.
     So I brought up my plan with the family members at hand - my sister-in-law, my dad, and my mom. If my brother's pain was not brought under control via the doctor's method by a certain time, I wanted everyone's permission to go to Plan B. I needed to know if they were ok with it. Now was not the time to sow the seeds of regret and I sensed some hesitation in my dad. Or, possibly I was projecting my own doubts and fears. I certainly had my own. Everybody agreed. The agreed upon time came and went and my brother's pain was still not under control. Plan B.
    This is not a story about my helping my brother. This is about my own sense of shortcomings and my mortal fear of doing him harm. At some point, I walked outside and called my wife back at home. I made a demand of her that I've never done before, from her or anyone else. I asked her, "tell me that I'm right. I need to hear the words. Tell me that when I make medical decisions, I'm always right." I needed reassurance like I never needed it before. And I hope that I never need it again. Don't get me wrong, when I don't know or am uncertain, I am quick to ask for help. I ain't too proud to beg, so to speak. I know my limitations.
     But right then and there, I needed to hear the words. Logically, I knew my proscribed course of action would work. No, that's just hubris. I hoped it would work.  Or, maybe I did know. Who knows? That logic needed some emotional backup, though.  About a few months before all this occurred, my brother once told me in the middle of a rather heated discussion (which is a gross understatement), "you're going to be wrong one day, and I hate to see what that's going to do to you." He said the words with a bit of venom and it did cut deep. I guess those words hung around with me until that very night. I knew at some point, I'll make an incorrect decision but I never imagined it'd be with him.
     I was stuck. Waiting was not an option. Allowing him to suffer was not an option. Getting it wrong was not an option.  That night would NOT be the night I got it wrong. If I was wrong, it'd destroy me. Likewise, if I let him suffer in pain and followed the doctor's original path, it'd destroy me. Neither option would allow me to live with myself. I see the reason why we're not supposed to treat family members. I had to be right, more so than at any other point in my life. My brother depended on it. So I did what I thought was the best course of action and my wife reassured me. From where her confidence in me came, I have no idea. I never asked her. I'm a bit afraid of the answer. But she was right. Within a short time, his pain subsided.
     As I write this, I now realize why this story has haunted me. It's not, I repeat not one remembered and told out of confidence. Au contrarywise. I was utterly terrified of his prediction coming true that night. I didn't know it at the time, though. That fear was displaced by the overwhelming grief of losing him. It's just now resurfacing. I'm just now remembering all the other emotions that were felt leading up to the point. It was all such a blur of pain and sorrow and agony. One demon exorcised. Many, many, many more to go.

and it begins

2011-06-07T18:02:00.000-05:00

That post before? I'm guessing, and I have to guess now since he's been cruelly ripped from me, that post is where my brother would've emailed me, "yeah, sometimes you go too deep and it's going over everyone's head, myself included. I have no idea what you're talking about." That brings a sad, sad smile to my face. We were so very different but grew so close.

below the surface

2011-06-07T09:01:00.000-05:00

On the edge of sleep,
I heard voices behind the door
the known and the nameless,
familiar and faceless,
my angels and my demons at war.
Which one will lose - depends on what I choose
Or maybe which voice I ignore.
- double agent by peart

There are good days and there are bad days. Which direction a day will go does not reflect a choice on my part but is instead the result of an utterly capricious randomness. It's hard to make plans for the day ahead when life keeps throwing bombs at you. It's too easy to fall into apathy when I have no control. But I have learned that when I start to dream, my subconscious is telling me something and it would behoove me to listen. Some action on my part is still required. My dreams, though, are usually bizarre and require a lot of effort to unfold before their meaning is derived. But when I wake up from a dream where the dream is as simple as I'm crying for the loss of my brother, that doesn't exactly require a psychoanalyst to figure out. Clearly, there is something more down in there that needs to come out. I expected the memorial to satisfy whatever that is but it obviously did not. My gut is telling me that there are more stories about my brother, his process of dying and my reflections therein that need to be told. This ain't going to be easy. I can see why my dream was telling me to prepare for more tears.

who was my brother?

2011-06-05T09:29:00.000-05:00

a copy of what I read at my brother's memorial service:

Who was my brother Josh? How do I distill his essence down to who he truly was? He was a brother, a son, a husband and a father. But a genealogy tells nothing of the manner in which a man chooses to live out his life. So into the dark recesses of my memory I went in search of a memory that would sum up who Josh was. But how can just one story encompass a man’s life? So I ask that you please indulge me three stories from the early, middle and latter stages of his life.

First Story. As kids, we’d fight as brothers tend to do. But we didn’t fight like most brothers. Or, I should say that at least Josh didn’t. When anger would get the better of me and I’d attempt to rain down blows upon him, he wouldn’t hit me. Being the older and bigger one, he’d just pin me to the ground or use those long arms to put me in a bear hug turning my aggression into impotence. He’d calmly hold me down and say, “I’ll let go when you’re done. Are you done?”

Second Story. Josh went to college, got himself an education, met his soul mate, and then decided to follow in our dad’s footsteps by not using his degree at all. He fell in love with woodworking. He fine tuned his craft until he built absolutely gorgeous kitchens for his customers. But he’ll be remembered most for the things he built for those he loved – the bed in which his daughter Katelyn rests her head to sleep every night, the bed in which his son Ethan puts his head to sleep every night, nevermind all the additions, nooks and crannies that he added to their house, and much of my parents’ house was built with my brother’s help, especially the cabinets which hold their dishes.

Third Story. During his battle for life, there came a point where something suspicious arose on his tonsils. So the doctor removed them. While he slowly recovered from the anesthesia and surgery, he would float in and out of consciousness. He had been put under, had his throat scraped and his tonsils removed. And do you know what he first said during one of those brief periods of awakening? No complaining, no expression of pain, or even a request for water. No, in a scratchy and soft voice he whispered “Happy Birthday,” to my mom. The surgery occurred on my mom’s birthday and he remembered to say happy birthday in a drugged state. How many of you would remember to wish your mom happy birthday in the midst of all that?

And so from these stories, a picture of who Josh was begins to emerge. He was a kind, gentle-hearted soul. Slow to anger, quick to help, he was the classic middle child – the peacemaker. And then he got cancer. And I saw in him a determination, a resilience, an anger and above all, a desire to live even when it meant pain. Yes, his nemesis Pain was ever present throughout his struggle. Suddenly, this notion of the gentle giant was no longer adequate to describe him. I had trouble reconciling what I knew of the gentle Josh with the fighting Josh.

I got a chance to ask him about this. Less than two months ago, I was staying with him down at a motel near MD Anderson so he could undergo daily radiation treatments. The radiation treatments took all of 20 minutes so we had plenty of time to fill the day. And so I asked him what got him up out of bed every day? What kept him going throughout all this? At first he was perplexed by the question. “Many people give up,” I told him. “It happens.” But he couldn’t wrap his brain around the notion of people wanting to die. It was a foreign concept to him. Ever the pestering little brother, I pushed him further on his answer. He became angry. Tears started flowing down his face. And through those tears he told me the REAL reason. “Wanting to live” was only half the answer. WHAT he wanted to live for was the half that was unanswered. With his jaw clenched and his voice trembling with anger and sadness, he said to me, “I DON’T WANT TO LEAVE ANNA….I MISS HER…..I WANT TO WATCH ETHAN AND KATE GROW UP…..I WANT TO WATCH THEM PLAY SPORTS, GRADUATE HIGH SCHOOL, GO TO COLLEGE, GET MARRIED…… There’s so much of their life I’m going to miss.” The last statement he said in almost a whisper that hung in the air.

Ethan and Katelyn, you may have wondered why your dad was absent so much. It often seemed like he was always making trips down to MD Anderson. It probably didn’t seem fair. And it wasn’t fair. I saw the toll it took on the family by him being away. Cancer is anything but fair. But know this, he fought to the end, and I mean the very bitter end for one simple reason. He loved y’all with all his being and couldn’t bear the thought of leaving y’all. And so who was Josh? Look to the love of his family and his undeniably painful and moving struggle to stay alive for them. He loved Anna, he loved Ethan, and he loved Katelyn with all of his heart, all of his mind, and all of his soul. THAT is who my brother was.

And now, I’d like to finish up with a simple poem written by a Roman poet. It seems the nature of a brother’s grief hasn’t changed much in over 2,000 years.

Through many countries and over many seas

I have come, Brother, to these melancholy rites,

to show this final honour to the dead,

and speak (to what purpose?) to your silent ashes,

since now fate takes you, even you, from me.

Oh, Brother, ripped away from me so cruelly,

now at least take these last offerings, blessed

by the tradition of our parents, gifts to the dead.

Accept by custom, what a brother's tears drown,

and for eternity, Brother, ave atque vale

'Hail and Farewll.'

2011-06-04T16:10:00.000-05:00

     "Y'all need to stop giving me new material to write about," I tell my dad. The clock reads nearly 11 pm at an IHOP about an hour south of Dallas. We're on the road out of necessity and he needs to give himself his IV antibiotic so I turn the hanging light into a makeshift IV pole. The staff are understanding and even helpful. The day of my brother's memorial service, my dad's arm developed a red swelling along one of his veins. He showed it first to me about 1 pm at the reception. Not good. The odd thing was the swelling was not located where the IV line went in. It was downstream. You start running through the differential diagnosis of what it could be. Most likely it was something relatively benign but included in the list of the differential diagnosis were some potentially serious stuff - bacteremia, lymphatic involvement, cellulitis, necrotizing fascitis, etc. By that evening, it had grown substantially and we made the call that it was time to leave Dallas and begin the 5+ hour journey down to MD Anderson's ER, again. Again. Again. Again. It never ends, except when it ends as it did for my brother. The price of cancer is eternal vigilence. It's easy to feel trapped sometimes.
     The day my brother died, we ended up in the ER for an infection in my dad. The day of his memorial, we are there again. By 3 am, we are once again drawn into the inescapable gravitational pull of MDACC. The doc comes in, examines it and is puzzled by the fact that the swelling is discordant from the IV site. She says to my dad, "most likely, it's nothing terribly serious, probably superficial thrombophlebitis from the Zosyn. It's known to cause that in some people. But given your disease we need to be sure. I'm going to order an ultrasound but just to be on the safe side, we'll continue the IV antibiotics until we have the ultrasound results."
     The ultrasound confirms it. Present in the vein is a clot that clogs everything up. Inflammation and swelling follow and my dad is left with a painful but usually relatively benign condition. He is discharged by lunchtime and in good shape. That is until he calls me at midnight later that day. Out with a buddy at a bar, it's the first time I'm having fun since I can't remember when. I switch to doctor mode instantly, though. His temperature is starting to creep up to that dangerous cliff of 100.4 degrees. So far, the closest he got to the edge was 99.8 but that's scary enough. Fortunately, a fever never materializes. By noon the next day, he's over at my house and showing me his arm. His forearm is starting to look like Popeye except red. I wonder if we're starting to approach one of those rare but deadly serious complications of superficial thrombophlebitis (STP) or did they miss a deep vein thrombophlebitis on top of the STP. Piecing together my anatomy, I somewhat arbitrarily decide that if the swelling swallows and passes the elbow, it's time to head to the ER post haste. The forearm has compartments enclosed by strong sheaths. If the process breaks out of that sheath, that's an uh-oh situation. I'm not sure what I base that conclusion on. It sounds right, though.
     My wife has accused me of enjoying these moments in a twisted fashion. Harsh, but partially true if I'm honest with myself. It's not that I enjoy them. At these junctions, my life and its purporse seems to resolve into a clarity that I can't quite explain. I feel a deep fear which goes straight to my bones at having to make decisions that affect those I love. But, somewhat arrogantly yet true nonetheless, I deep down know that the calls I make are right and there's ironic meaning knowing that someone can benefit from that arrogant self-assertion. I've told my dad on many occassions, this one no exception, "I love it when the doctor says exactly the same thing I tell him beforehand. Either we're both idiots or I actually know what I'm doing." So that fear of being wrong and the heady power of being right lie in opposing juxtaposition. At these points, I feel more alive and connected to life even when surrounded with the forces of death. And yet I utterly despise and revile the situations that necessitate me being me. What a strange manner of a career.
     I make the call. Instead of heading back down to the ER, we're going to use compression, increase the frequency of heat and elevation and add an NSAID accepting the short term risk of masking a fever. We'll see how it progresses. At this point, I don't know if I'm right so all that sits there is the fear of being wrong, the absolution of being correct not yet borne out. I hope I'm right.

rule of grief #4

2011-06-01T06:50:00.000-05:00

#4 - Know when to be alone and when you need someone to lean on. In all actuality, this is exceptionally difficult to master, at least for me. As a back-up, have someone who knows how to tell the difference in you.

     This isn't a rule so much as a really good idea to have in place. The other morning I woke up and my wife was still home. "Why aren't you at work?" I asked groggily, a bit upset to have my morning solitude impinged upon.
     "You seemed like you needed me to stay home."
     "And what are you basing that upon? I told you, I'm ok."
     "You were sleeping angrily."
     "Huh? Sleeping angrily?" I had to laugh at that one.
     My wife based my mental status on the emotions of when I was sleeping.  Sure, why not? She couldn't articulate it and she stood by her assessment.  I'm not sure I understand it but I've learned to trust her. Judging information of the world around her by intituition and emotional radar, my wife balances out my cold rationality. We ended up talking the entire morning until the early afternoon before she accompanied me down to MDACC to visit my dad when he was in the hospital (he's doing well by the way). It turns out she couldn't have been more right. I did need her to talk to.

grief work

2011-05-31T18:40:00.001-05:00

     I've often heard the phrase 'working through emotions'. It's such a bizarre concept to me. How does one work at feeling emotions? But stuck in apathy and lethargy, bordering on the edge of a very dark place, I knew I had to try something different. Going back to the normal routine of life wouldn't work. There would be no 'throwing myself into my work.' Besides, I have no school, no visits to MD Anderson, no nothing. And I'm not about to find the motivation to engage the mundane aspects of life like going to the grocery or cleaning (shudder). I needed to give some physical embodiement to my emotion. But not just anything. It had to have some meaning and symbol behind it. Some sweat and tears along with just a little bit of blood would probably aid the process.
     Some of my wife's coworkers graciously offered to buy us a plant to remember my brother. Yeah, that sounds right. Good idea. We both loved our gardens. We were as different as night and day but that is one thing I, along with my dad, helped to get my brother hooked on. If it's going to be in memory of him, it better be a plant that lasts. That meant a tree. My soil is awful and compacted. It better be an indestructible tree. I've got it. In the front yard of my brother and sister-in-law's house (I don't know if I'll ever be able to call it just her house) is a beautiful crape myrtle called 'Natchez'. White fragrant flowers with a cinammon colored trunk, it's a bullet-proof tree and an icon of the south.
     It took visits to 4 different nurseries but I finally found a good specimen. That's ok, because I wasn't in a hurry. I had all day. Besides, I was working on grief as much as planting a tree. It doesn't look like much now but soon it will grow into a beautiful tree (you can see the bark of some down at MDACC here). My garden was in a complete state of disarray since A) we've been in a severe drought and B) I've hardly been around to tend to it. So I sweated plenty in the Houston sun, cried when I moved the crape that was originally there that had a memory associated with my dad (another long story) and replaced it with the one for my brother, and bled when I pruned some nearby roses. Grief work, I get it now.

a measure of life

2011-05-31T10:48:00.000-05:00

There existed an ongoing debate. On one side, there was my brother who thought himself average. Not bad, not great, just average. He was comparing himself to people like Bill Gates or Steve Jobs who would be in that class of greatness. He subscribed to my dad's joking assessment of "I shot for mediocrity and hit it." On the other side was my sister-in-law. She thought her husband above average and that everyone has some talents or abilities to put to use. I myself found it a strange and interesting debate to watch, coming down on neither side. Always a contrarian, at the time I found that the question of competence and self-worth didn't work very well for me but I could not quite put it into words. That is until now (but they're not my words, they are somebody else's). I was pondering the death of my brother and the ripples it sent out and came across this chapter from Steinbeck. I could not have encountered this passage at a more ripe and appropriate time in my life.

     A child may ask, 'What is the world's story about?' And a grown man or woman may wonder, 'What way will the world go? How does it end and, while we're at it, what's the story about?'
     I believe that there is one story in the world, and only one, that has frightened and inspired us, so that we live in a Pearl White serial of continuing thought and wonder. Humans are caught in their lives, in their thoughts, in their hungers and ambitions, in their avarice and cruelty, and in their kindness and generosity too -- in a net of good and evil. I think this is the only story we have and that it occurs on all levels of feeling and intelligence. Virtue and vice were warp and woof of our first consciousness, and they will be the fabric of our last, and this despite changes we might impose on field and river and mountain, on economy and manners. There is no other story. A man, after he has brushed off the dust and chips of his life, will have left only the hard, clean questions: Was it good or was it evil? Have I done well -- or ill?
     Herodotus, in the Persian War, tells a story of how Croesus, the richest and most favoured King of his time, asked Solon the Athenian, a leading question. He would not have asked it if he had he not been worried about the answer. 'Who,' he asked, 'is the luckiest person in the world?' He must have been eaten with doubt, and hungry for reassurance. Solon told him of three lucky people in old times. And Croesus more than likely did not listen; so anxious was he about himself. And when Solon did not mention him, Croesus was forced to say, 'Do you consider me lucky?' Solon did not hesitate in his answer. 'How can I tell?' he said. 'You aren't dead yet.' And this answer must have haunted Croesus dismally as his luck disappeared, and his wealth and his kingdom. And as he was being burned on a tall fire, he may have thought of it and perhaps wished he had not asked or not been answered.
     And in our time, when a man dies -- if he has had wealth and influence, power and all the vestments that arouse envy, and after the living take stock of the dead man's property and his eminence and works and monuments -- the question is still there: Was his life good or was it evil? -- which is another way of putting Croesus's question. Envies are gone, and the measuring stick is: Was he loved or was he hated? Is his death felt as a loss or does a kind of joy come of it?
     I remember clearly the deaths of three men. One was the richest man of the century, who, having clawed his way to wealth through the souls and bodies of men, spent many years trying to buy back the love he had forfeited and by that process performed great service to the world and, perhaps, had much more than balanced the evils of his rise. I was on a ship when he died. The news was posted on the bulletin board, and nearly everyone received the news with pleasure. Several said 'Thank God that son of a bitch is dead.'
     Then there was a man, smart as Satan, who, lacking some perception of human dignity and knowing all too well every aspect of human weakness and wickedness, used his special knowledge to warp men, to buy men, to bribe and threaten and seduce until he found himself in a position of great power. He clothed his motives in the names of virtue, and I wondered if he ever knew that no gift will ever buy back a man's love when you have removed his self-love. A bribed man can only hate his briber. When this man died, the nation rang with praise, and just beneath, with gladness that he was dead.
     There was a third man, who perhaps made many errors in performance, but whose effective life was devoted to making men brave and dignified and good in a time when they were poor and frightened and when there were ugly forces loose in the world to ultilize their fears. This man was hated by the few. When he did, the people burst into tears in the streets and their minds wailed, 'What can we do now? How can we go on without him?'
     In uncertainty I am certain that underneath their topmost layers of frailty men want to be good and want to be loved. Indeed, most of their vices are attempted shortcuts to love. When a man comes to die, no matter what his talents and influence and genius, if he dies unloved, his life must be a failure to him, and his dying a cold horror. It seems to me that if you or I must choose between two courses of thought or action we should remember our dying so to live that our death brings no pleasure to the world.

Average, below average, above average. They don't matter to me. I like Steinbeck's question better. And I certainly know the answer as it pertains to my brother.

nothing & something

2011-05-27T20:31:00.000-05:00

I knew this point would come but knowledge of the coming struggle doesn't make it any easier. It's all the harder for knowing it but still being powerless to effect it. No caring for my brother. No lectures to run through. No brother at all, not even to forward email jokes to. No exams to prepare for. No medical or cancer questions to answer. Nothing. Nothing but the everyday routines of life. It's hard to give a damn about those right now. Even under the best of circumstances, I don't do well with the day in and day out aspects of life. Add crushing defeat and I become my own worst enemy. I turn a lot to literature to keep those demons at bay. In this passage from East of Eden, an older gentleman named Samuel whom reminds me greatly of my dad is speaking with a friend, Adam, who has just suffered a tragedy and is now left with two newborn twins.

     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."

That's what I'm doing. I'm going through the motions. Hell, I'm not even doing that. The past few days, I have set ridiculously low daily goals to accomplish like 'do a load of laundry and actually put it away' or 'mow the yard.' It's all I can do to reach even those low marks. I'm trusting in Samuel's words that 'something will grow' and that by engaging the grief as well as the day, I can have some impact on what grows. It should be true, at least it was once before. My dad gave me similar advice at an earlier point in my life when I felt stuck and couldn't go on. Something will grow.

request

2011-05-26T06:34:00.001-05:00

At my brother's memorial service, there will be a point in the service for anyone to share your favorite memory of my brother or what impact he may have had your life. We feel this will be important for the family to hear, especially his son and daughter. In the interest of fairness, though, if you should decide to share, please keep it brief.

2011-05-25T21:03:00.000-05:00

Less than an hour after my brother passed away, the family still held close around him full of tears. I saw my sister-in-law trying to console her son and daughter. But there were two of them, and now only one parent. There simply was not enough of her to wrap them both close. Now I am horrible at hugs. Ask anyone that knows me, especially my Canadian cousins. But even I knew that it was time to step up to the plate. And in my mind, I thought of all the times I saw my niece cuddled up in my brother's arms. During our annual trip to the beach, one would often find her asleep in her daddy's lap. So I whisked her up and set her down in my lap with my arms around her. It felt awkward and miserable and my heart broke even more, if that is even possible. Like I said, I'm horrible at hugs. But I held her tight.

Just the other day, I was scrolling through old pictures and came across this one that my mom took. My first thought was, 'does he have cancer here?' Yes, of course he does. He has the bald head. The date is my birthday of last year. How's that for twisted irony. He would have already started chemotherapy by now. Judging by how good he looks, this is during our hopeful phase.

translation

2011-05-25T15:38:00.000-05:00

With my dad in the hospital, I tried to help out by communicating a couple of things to his workers. The head one is from El Salvador and while he does speak some english, it can get difficult to convey some things over the phone. So I met up with him and tried best I could in my pidgin spanish. As I was about to drive away, he came up and leaned in my window.

"Tu brother?"

"Muerto," I confirmed his suspicion. It's emotionally difficult to say even in another language, perhaps because I wasn't expecting to have to deal with any grief at this point in time. Just a simple task to fulfill.

He drew in a sharp breath between his teeth and shook his head signifying displeasure. "Tu father, muy poquito..." and made the motion with his hand like a mouth talking. Basically, he was saying he didn't talk much anymore. That was a big deal. A year ago, he'd say of my father, "mucho widdy-widdy." It's a phrase that basically means chatty, or even too chatty. That's who my dad was. He'd constantly be talking to the customers or the workers about their lives or his.

Cancer sucks.

rules of grief

2011-05-23T14:26:00.000-05:00

Today marks the transition from caring for my brother to mourning his loss. As I drove home from his house yesterday, - (and yes, I still think of him in the present tense as in 'his house', and at what point, if ever, does it become just my sister in law's house?) - I gave myself three rules to follow. And that's strange because I hate rules and have never been one to follow them very well. Whether there is any value or truth to be derived from them for myself (or anyone else since I gave no thought to whether they would work for others), well I'll have to wait and see.

Grief is a process, not a goal. When I fell in love with my wife, it wasn't a goal. Sure, you try to woo and pursue your beloved's affection but ultimately, the act of falling in love is something experiential. And you don't stop falling in love after the 'goal' of marriage is passed. The relationship changes, evolves, ebbs & flows. There is no end, only the experience. I strongly suspect that losing someone you love is the same, only in the opposite direction. There is no getting over the loss of my brother. The loss will always be there. The challenge is learn how to hold his presence, my memories of him, his very essence within me and still carry on in my own life without being destroyed by the loss.
You can't tell yourself how to feel. I find myself feeling emotions faster than I can even register them. On the way driving home, the clouds broke and the sun came out as I neared Houston. I rolled down the windows to feel the warm, humid gulf coast air. It simply felt good. In less than a second, I felt guilty for enjoying that moment. My brother is dead. How dare I feel pleasure at the sensation of the warm air? He can't so why should I? Immediately following that emotion was one saying, 'yeah, but what would your brother want for you?' That leads me to the last rule.
Allow for contradictions and mutually exclusive experiences. To answer that last question above, I think my brother would absolutely want me to mourn him fully. He'd also want me to live my life as I best know how. So I allowed for the contradiction of the pleasure of a warm breeze juxtaposed with the guilt associated with that feeling. One didn't have to win out over the other. It doesn't have to make sense at this point. It just is.

funeral

2011-05-23T13:54:00.000-05:00

Due to my dad's hospitalization, the funeral will take place on June 2nd at 11:00 am in First Presbyterian Church of Allen. The address can be found on their website.

In lieu of flowers, please make a donation to the American Cancer Society in honor and memory of my brother. Click here and it will tell you how to make a secure donation online or over the phone. You can have a card with a personal message sent to the family by filling in the addresses (listed below).

(my brother's family)
The Van Sligtenhorst Family
431 Lakefield Drive
Plano, Tx
75094

(our parents' family)
Abe & Lynne Van Sligtenhorst
22735 Lain Road
Spring, Tx
77379

(my family)
The Van Sligtenhorst Family
5022 Mossy Bridge Dr.
Spring, Tx
77379

no rest

2011-05-23T05:14:00.000-05:00

After the death of my brother, I wanted nothing more than to go home, sleep, see my own family, and then grieve. I left Dallas Sunday morning. Exhausted, I had to pull the car over once and sleep about half an hour in a parking lot before continuing on. Once I got home, I spent some much needed time with my wife and son. By 4:30 in the afternoon, I was ready for bed. I downed two benadryl with a glass of wine, climbed into my bed and visited Mr. Sandman. I wake up disoriented and on the couch. The cause of my arousal from slumber was because a cat was on top of me. I have no idea why I'm out on the couch and I'm not even sure what day it is. I guess I was sleep walking again. The next thing I know is that I'm on the phone with my wife. Much like arriving on the couch, I don't even remember running to answer my cell phone. My first sense of consciousness was hearing these words from my wife, "your dad has a fever." She said it very slowly and loudly, speaking as if to someone who had cognitive difficulties. I am jolted awake now. "I'm on my way."

And on the way over to my parent's house, I automatically reach for the phone to call my brother to let him know that I'm taking dad to the emergency room. A split second later the realization hits me that he's not there to answer the phone anymore. Ah, shit. I can't break down crying now. I need my wits about me. I'll be damned if this week will hold two funerals. So I call my mom and request a source of caffeine waiting with my dad. Into the car he goes along with my mom and we're flying down to MD Anderson's ER.

I'm in the left lane flashing my lights at every car in my way. Most get out of the way. Then I realize that the next vehicle in front is a cop truck. He flashes his sirens as if to signal me to slow down. I pull up next to him and start mouthing "H-O-S-P-I-T-A-L." He doesn't understand me but he knows something is wrong. He then changes lane to get over to the passenger side of my car. My mom and dad roll down the windows and yell it again. Even though this is happening at 90 mph, he's close enough to them and finally, he recognizes. "Which one?" we read his lips. My mom signs M-D-A-C-C with her fingers. He nods in understanding. His diesel truck roars to life, gets in front of me, turns on his lights and begins to clear traffic out of the way for us. Only in Texas. God, I love this state.

We get to the emergency room. Like last time, by the time we get to there, he is not presenting with a fever. It doesn't matter in his cases like his. He had a fever at home and he's a leukemia patient recently out of chemo. Unlike last time, though, he's stable with respect to blood pressure and heart rate. No sign of impending septic shock this time around. The critical test results are the white blood cell counts, especially his neutrophils. By midnight, we have the results and his white counts are definitely low but his neutrophils are right on the edge of normal. It wouldn't take much of a drop for him to become neutropenic. IV antibiotics and fluids finish up around 1 am and the doc comes back around 2 am. My dad is right on the cusp and the doc is not sure what he wants to do. Technically, he could discharge my dad. He no longer has a fever and by definition, is not neutropenic. But good docs don't use just numbers.

Given the current situation, he asks my dad, "what do you want to do?" My dad turns and asks me. I love the doc's response, "I'm not asking him. I'm asking you." We start talking through the process and it's clear that if he admits my dad now, the hospital stay has a higher probability of being shorter since he's very early on in the infection. That would increase the likelihood of my dad being able to attend his son's funeral. If he discharges him now with oral antibiotics, it's possible (in my mind I would say almost definite) that my dad's counts would start to plummet. With a limited number of infection fighting neutrophils, a secondary infection could set in and then we'd be in real trouble. Not only would he miss his son's funeral, he'd be at risk of his own funeral. With septic shock, it's not usualy the first infection that kills the patient. It's often the second much harder to treat one that does them in. The doc makes the decision. "I'm admitting him." I tell him that I agree and he kinda smirks and says, "good." He could care less if I agree. He's making the right decision about what's best for the patient, period. I like that even more. So instead of my parents being able to grieve properly together just 24 hours the death of their son, my dad is in the hospital.

Cancer sucks.

anguish

2011-05-22T06:18:00.001-05:00

Exhaustion and frustration turn to anguish and grief. A few moments before the 2:00 am dosing, the demeanor of my brother changes. His respiration, though the same in rate, changes in pattern. The all too familiar twitches of his legs and arms cease. His face no longer looks so strained. I forgo the dose and instead opt to begin waking the adults. Sleepily, the wife, the mom and dad, and me surround my brother. His wife is on his left and his mom on the right. His dad is at the foot of the hospital bed and I'm near him. Our parents remember the details of his birth while his wife tells of their first date, but mostly it's a heavy silence. Periodically, I measure the respiration rate. True to form, he keeps on fighting and going. About an hour passes and slowly, his breathing rate drops to 20....18....16....14....12.....down to 8 breaths per minute. It's time. His wife wakes and brings the kids in. Seeing his kids present begins to unleash the tears in everyone. Kleenex boxes are rapidly being emptied. And at 3:30 am, my brother draws his last breath. Now the gut wrenching grief and wailing truly begin. My nephew and niece's dad, my sister-in-law's husband, my parents' son, and my brother is dead.

In deference to the acute grief, we request that you please wait a few days before inundating my sister-in-law with your condolences. I will post the information for the funeral arrangements as soon as they are finalized.