ownership

The first visit to MD Anderson showed a doctor (let's call him Dr. Andy for MD Anderson) who was willing to take my brother but was not pushing it.  He kept stressing that it was a long way from Dallas, it's a big headache to drive down, the same treatments are available up there, yada yada yada.  He even went so far as to say that the treatment prescribed by the Dallas oncologist was a respectable one.  Really?  Then why did he go further with cisplatin, docetaxel and zometa?

Fast forward a bit.  At the last visit before his second round of chemo, I mentioned that my brother's white blood cell counts had rebounded quite a bit from the counts a week and a half ago.  Dr. Andy's expression changed immediately.  You see, he hadn't bled at MD Anderson.  He had been bled up in Dallas.  "Why are you getting bled."  It was really a statement of disapproval rather than a question.  The Dallas oncologist had bled him for a couple of different reasons and we explained that this was all part of him maintaining a relationship with a doctor up there in case of acute needs like an infection, incidently which was all urged at the behest of Dr. Andy.  It was clear he wasn't happy about the bleed.  "Look, you're going to be a pin cushion by the end of this and I don't want you getting bled needlessly."

I couldn't have been more pleased at that point.  Dr. Andy had taken ownership of my brother's care and was no longer offering up these nonsensical platitudes that care is care no matter where one goes.  He had skin in the game and didn't want things messed up by another doctor.  I can relate.  As a scientist, I hated it when people tried to derail my experiments by piling on pointless measurements.  I'm sure I won't be that different as a doctor.

learning strategies

I've been experimenting with various forms of studying trying to find the way that works best for me.  It varies from class to class and I've even found that it varies from lecturer to lecturer.  Some give very comprehensive detailed outlines that makes studying straightforward.  Others kind of ramble and write prosaic diatribes.  Some stuff requires wrestling over the material on a white board to draw the pathways.  The method I'm trying right now is to outline each lecture before watching.  I tend to be more of an auditory learner so my thought is that if I go over a bit first on my own, then when the prof explains the material, it should be self evident.  Last semester I tinkered with that a bit by doing it the old fashion way and writing it down.  I thought I'd go digital this time with the thought that rather than flip needlessly through my notes trying to find that one obscure fact, I can just hit Ctrl+F and find it automatically.  Now I'm trying typing them into Word and I've learned several things.

1. Microsoft Word does NOT recognize many scientific words at all, nevermind abbreviations.  Look at the image above and notice how many words have little red squiggly lines under them.  I got tired of adding them to the Word dictionary and just ignore them now.  Consequently, I have no idea when I actually do  mispell something.
2. For me who grow up at the edge of the digital frontier, I learned to write before I learned to type.  I could write papers on a computer but I always had to print them out to proofread them.  So I'm not quite a digital native.  And what I've found is that when reading something and writing it by is not the same to me as reading something and typing it.  When I write by hand, I consciously think about what I want to write, or, when I write it forces me to consciously think about it.  When I type, my brain can shut down a bit and just blindly type what I read without really committing it to memory.  Consequently, I have to train my brain to actually read what I'm typing and not just transcribe it blindly.

Being able to search your notes by keyword definitely helps, especially around final, but I don't think it's working quite as well as I had hoped.  I still need to fine tune it.  I just need to address point #2 better so that when I type my notes up, it sticks as well as if I had written them out by hand.

going down the rabbit hole

Touch a hot pan and your hand withdraws automatically.  There is no conscious effort involved.  The nerves that carry the information are among the fastest conduction fibers in your body and bypass the any "thinking" centers of the brain.  It's quite an amazing system but we have a negative view of pain.  It's understandable.  After all, it hurts.  But look at it from a different perspective.  Your nervous system needs some way to communicate what's going on in all of these cells and when appropriately, it needs to respond with lightning quickness bypassing any executive orders.  It's an alarm system really.

On my recommendation, my brother is backing off on his pain meds.  My philosophy is "dose to effect".  Before the chemo started my brother's pain was a 4 on a good day (1 through 10 with 10 being the worst pain of your life) and a 7-8 on a bad day.  But society tells us to suck it up, to endure, to push past the pain.  As someone who grew up with football, I was taught at an early age to know the difference between playing with pain and playing with an injury.  Pain?  Suck it up.  Injury?  Stop before you make it worse.  I don't think we do that very well as patients distinguishing the difference.  So his doc upped the extended release morphine dose from 15 to 30 mg and bumped up the naproxen while continuing the short lasting hydrocodone.

A bit of time passes and his pain is about a 1-2 so he cuts out the hydrocodone all together.  Still a 1-2 so he takes a 15 mg ER morphine in the morning and a 30 mg in the evening.  Still a 1-2 and he now finds himself able to sleep in positions that he wasn't able to six months ago.  So he now cuts the naproxen dose down to an over the counter strength of 220 mg and here we are.

And his wife doesn't agree with this course of action.  She understandably likes him when he's not grumpy so why tempt fate.  But I know exactly what he's doing.  It's actually a bit surprising to see him conduct such a cold and calculated experiment on himself.  To be honest, I'd be doing the same thing.  Remember what I said about pain being a way of your periphery make itself heard?  He's determining if that calamitous concoction of a pacific yew tree extract (docetaxel), the precious metal of platinum coupled to chlorides and amine groups (cisplatin), and an acid with two phosphates (zometa) are working. 

If he decreases the pain meds and his pain is not an 8, that milieu of toxins is working.  It's not about reducing side effects, or having to take fewer pills, though those are added side benefits.  It's his way of putting up some antennae to see what his body has to say about those damned tumors.

abh

A = Ativan

B = Benadryl

H = Haldol

Once again, MD Anderson reveals its mettle as to why it's consistently rated the number #1 cancer center in the world. Why, you may ask? ABH. And what does ABH have to do with cancer? They offer this combo of three established and very unrelated drugs as a measure to control chemotherapy induced nausea. Ativan is an anti-anxiety medicine. Think valium. It's in the same class of drugs. Benadryl? Think the over the counter antihistamine drug that makes one sleepy. And Haldol? It's an anti-psychotic used in schizophrenia.

Put them together and what do you get? A helluva anti-nausea cocktail. Let me put it this way. After the last round of chemo, my brother didn't eat for 4-5 days, lost ~15 pounds, was horizontal the entire time and states that if he had been asked if he wanted to do chemo again, he would have flat out said NO. And that's knowing full well that refusing chemo meant death. That's how bad he felt. And after his second round? He answered the phone this morning after having 2 eggs for breakfast. Holy freakin' crap! These are the types of stories that make me want to be a physician now more than ever. And I want to shake the hand of the person who came up with the idea of using this cocktail because it works beautifully. Why it's not used more widely is beyond me.

outside the box

Most of my background is in cardiovascular and metabolic diseases. Cancer, I haven't a clue. But necessity is the mother of invention so I'm educating myself. Given my liberal arts background, I've never been one to see every detail as necessary. I'm much more of a big picture thinker. I assimilate. It's what I do. So when my brother started off treatment at MD Anderson, I felt he was in comfortable hands from a standard of care point of view. I walked out of the visits thinking, "this doc knows a helluva lot more than me" which is a good thing. I've had it be the opposite all too often and that's never a good thing.

As a physician, we're trained (supposedly) by two guiding principles.

#1 - First, do no harm. Very, very, very important. And it leads to the second principle.

#2 - practice what is dubbed "evidence based medicine". What does that mean? We only use what has gone through rigorous clinical trials and shown evidence to have an acceptable risk/reward profile. This is how drugs and therapies are approved and is the best system we have.

But what do you do when it's your brother's life you're fighting for? I trusted his doc on the chemo end. I could find no flaws in his logic. But what about so called alternative therapies? He didn't bring them up and shrugged his shoulders in response to them despite the fact that MD Anderson has a whole section devoted to ingestigating them. In a perfect world, there are no alternative therapies. There are those that work and those that don't. That's what evidence based medicine is about. But we live in the real world. Investors can't make money providing evidence that green tea can help with cancer. In no way am I critical of the pharmaceutical industry. They come up with some wonderful and creative treatments. But it'll only take one so far.

So we're left with less conclusive trials (usually epidemiological or observational) and as a physician, you're left with your two principles. Could this alternative therapy hurt? And what is the evidence that it might help? And that's what I've been spending a lot of my time on rather than studying. Which is an awfully long intro to this small study titled "Psychological improves survival for breast cancer patients: a randomized clincial trial." In a nutshell, this group took women with breast cancer and assigned them to psychological counseling plus the normal therapies or just the normal therapies. The group that received the adjunctive counseling survived longer. It was an extremely small study so by no means was it definitive. But the part that got me was an accompanying scathing editorial. The title says it all "Finding what is not there". They go on to find fault with the methodology of the study and rip it apart finally concluding it was a monumental waste of time.

Part of their critique of the methodology is valid but I suspect they're throwing the baby out with the bathwater. Saying something cannot be there because it doesn't add up is tantamount to idiocy. Don't believe me? Let me let you in on a dirty little secret. Drugs happen despite people, not because they make perfect sense. Let's take the statin drugs. You've all seen the commercials and probably know someone who's taking Lipitor. Best selling drugs of all time, period. They've reduced cardiovascular mortality substantially. Know what? They almost never happened. Two companies were pursuing them early on. The Japanese group pulled the plug on their program for reasons that weren't clear. It scared the bejebus out of Merck. They even flew over to Japan to try to find out the reason. No dice. Merck took a leap and went forward with what was then a controversial concept. Science sometimes requires that people move forward based on their hunch. If you wait for a definitive answer, you'll wait for eons. It'll never come. A leap of faith is sometimes required which is ultimately why I think our scientific culture is so resistant to outside ideas. They require us to expand our creativity and explore the obvious possibility that we don't know everything.

clueless

Things sometimes work out despite one's best intentions. I had exams last week (which explains my lack of posts) and I walked out of my neurology class with a big case of Uh-Oh. With my brother's noma, it's made studying a bit more distracting. Consequently, I got way, way, way behind. About 17 lectures worth behind. So in a week, I crammed away thinking I've got a decent grasp on the material. The day of the exam, I spoke with my brother and he had done a 180 degree turnaround. Little pain, appetite back and in much better spirits. I went into my exam with a much lighter heart. I walked out thinking I just may have failed the practical exam and I think I aced the written part. Eh, que sera, sera. Shows how much I know. 88 on the practical and a 79 on the written (class average is usually around a 79). Like a half court shot on the basketball court, I promise you I could not do that again......Except that I have to come the final exam.

I changed my answer on a whopping 10% of the practical questions. During each rest station, I'd go back, erase frantically away and change another answer. My the end of the practical, my eraser was but a nub requiring a second pencil for the written. I never, ever do that because in the past, inevitably I always changed it to the wrong answer. Consequently, I have a long standing policy to always go with my first instinct since it is usually correct. Not this time. I was so unsure and so clueless, I might as well have been flipping a coin. And the result? Everytime I changed my answer I got it right. Not a good precedent here. So at the end of the day, I'm actually left with a possibility at High Pass in this class despite having a complete and utter lack of comprehension in the material. If I knew what to study, I'd go gangbusters on it but I think I'll just act randomly since I haven't the foggiest. It seems to have worked out so far.

Remember this the next time you're in a doctor's office and they pause to think. They're probably frantically trying to remember some obscure piece of information that has escaped their recollection. I guess the take home message is that it's ALWAYS a good idea to question your doc because when we don't know, we have to come up with something that resembles our best guess.

But to top off the day with a third piece of good news, Rush is coming in concert again! And this time, I won't get behind (yeah, right).

health Wednesday

This video sums up pretty humurously (and sadly in a way revealing just how human the scientific process is) the notion of Fat=bad. It's from a documentary called Fat Head. I'll have to try to find the dvd.

interesting part II

There are two sides to every coin. And while the patient may not like to hear that their case is "interesting", I can assure you that it is a very good thing to have those types of phyicians in your corner. Take this video from one of my lectures as a prime example.

It's a very good thing that a neurosurgeon somewhere had the idea, "I wonder what interesting thing would happen if I stuck some electrodes here?"

interesting

"The interesting thing about your brother's case is...." Scientists and physicians use that word a lot. I heard it three times in a lecture the other day when a pediatric neurologist was referring to a 15-year old girl. I used it a lot myself. In a sense, it's what drives us to the field in the first place. We find these diseases and the workings of the body fascinating. It's a bit twisted when one thinks about it. We get excited about the unusual and morbidly abnormal. When your brother is on the other end of that word, though, it takes on a whole new meaning. I cringed when I heard him say it and I learned that the patient probably doesn't want to have their disease to be thought of as "interesting". But in the end, it's a good thing because it engages the physician to try to solve the problem. A necessary aspect of life.

one little victory

After a very long day at MD Anderson, the first round of chemo is done and in the bag. All in all, it was a wonderfully uneventful experience. Basically, a lot of waiting, see the nurse practioner, doc, pharmacist, some more waiting. The chemo wasn't schedule until 6pm and the thing takes ~8 hours in all. Fortunately, they got him bumped up and we started about 3pm. The chemo is suprisingly dull. Basically, they pump him full of saline, antiemetics (blocks nausea), a bisphosphanate (helps with the bone mets), and a steroid for a couple of hours. The docetaxel took 1 hour and then the cisplatin took 2 hours. Then they run some more fluids through him. We watched movies, talked, and just kinda hung out. You hear all these horror stories about chemotherapy but that still may come over the next few days. We'll see how he handles it. He passed the first part with flying colors. A lot of thoughts are swirling around in my head about the experience, both from the patient's and doctor's perspective but two things stood out today. First, it's a big headache for my brother and his wife to pack up from Dallas to come down to MD Anderson. There was some confusion about their daughter getting picked up from an extracurricular activity and I'm watching my brother lying in a hospital bed calling friends to try to get someone to pick up his daughter. And I'm thinking to myself, is it worth it? I pushed the hardest for them to come down here. And I pushed hard. So I feel in part responsible for that choice. I'm beginning to see the responsibility doctors carry. Not only are you implicitly in charge but most people want to trust their doctor. In fact, I've seen people stick with bad doctors because of some strange loyalty that they wouldn't tolerate in other relationships. But I thought back to our visit with the doctor earlier. He mentioned that they could get this treatment up in Dallas, too. So I challenged him on the fact that the course of treatment recommended up there was slightly different - still a taxol and a platinum - but different nonetheless. After being diplomatic (what is it about doctors never speaking even a remotely critical word about another?), his reply was finally that his choice was more aggressive. And that's why we're down there. It ain't easy. It's a right pain in the ass. But as I told the NP, "we ain't here for the customer service, we're here for the brains." I don't think she knew whether to take it as a compliment or insult. So we tolerate the bs because we want the most aggressive therapy that he can tolerate. The second thing that struck me was just plain odd. Normally, when my brother sits in one position for longer than 5 minutes, he's got to shift around due to pain. He was laying there, not moving, looking perfectly relaxed. He looked like I feel after a few beers. So I asked him what his pain was (the ol' 1-10 scale for pain management). Usually, he's about a 4 on good days. Bad days can hit 6 to 8. It was a 1 right then. I had to do a double take. He hasn't been a 1 since this whole ordeal started. My mom was just lamenting to me how he had changed his walk due to the hip pain. The doc had bumped up the extended release morphine and he had taken that about 20-30 minutes earlier. He had gotten really well hydrated. He had received acupuncture the day before. And then there's the psyche of finally starting treatment. Extended release morphine isn't going to kick in that quick by just upping the dose a bit. Getting 500ml of fluid ain't going to do it. So that leaves either the psychosomatic or the acupuncture. To paraphrase Bull Durham, "never screw with a winning streak." If it was the acupuncture, then friggin' stay with the acupuncture. It could be pure placebo. I don't care. Anything that takes a pain from an average of 4 (and that's a 4 on ER morphine, hyrdocodone/acetaminophen, and celebrex) down to 1....well, I call that evidence based medicine even if it's voodoo. Whatever works. He walked out without much of a limp at all and that was a great sight to see. I hope he tries it some more and the pain relief lasts long enough for the chemo to begin to do its voodoo. We could use a winning streak right now. And today we got one little victory to build upon.