Saturday, November 22, 2014

just for a moment, let's be still

Lately I have been thinking that I could just start a blog called "this week in heartbreak" based on my job. For example, this week's contenders would be:
  • The elderly man who has leukemia that just won't respond to any therapy, who is universally adored in our unit. I had to perform a bone marrow biopsy on him this past week and he thanked me and told me I did a good job. Also every time I go to see him, he always says he is glad to see me.
  • The couple who are in their 70s who sit side by side in the hospital room, like they are trying to reenact those scenes in When Harry Met Sally where elderly couples recount how they met. They met in Staten Island, childhood sweethearts.
  • The woman who was just diagnosed with breast cancer, who I met in my clinic for the first time yesterday, who ended our clinic encounter with "I am so glad you are my doctor." This was particularly heartfail material because about forty five minutes prior, I was seriously considering quitting due to not feeling good enough.

But I can't write about such things without it sounding awfully schmaltzy. I love, love, love my work, but at least once a week, more often multiple times a week, I question my competency. Everyone tells me it is the nature of the beast and all that, but it chips away at me, and usually by the end of the every week, I have a pit in my stomach and feel doomed.

Which is why, on my day off, I often find myself trying to do something in the kitchen. Because that's a place where I've spent a lot of time over the years. I don't follow recipes well, and I don't write down a lot of the details of how I make things, but most of the time, I can still produce something salvageable. And when I really want to feel accomplished, I make caramel. I have written about why it is therapeutic to make- it requires undivided attention and a feel for things. You can't daydream about chemotherapy regimens and lab results while you are making caramel, or that bastard will turn on you and take you down.

And now it is fall, and it is the season for caramel and all things apple. Last week I experimented on my day off and made a cake with grated apple and roasted sweet potatoes. It was okay (mostly because I covered it in brown sugar frosting), but it was not a keeper. Last year, I used smittenkitchen's recipe for apple cider caramels. I tinkered with it, but not much, because her recipes are fairly airtight. Those were tasty caramels but they were the kind of caramels you wrap in waxed paper and give your friends, and they love you forever. So, you know, kind of perfect. But I was not trying to make those types of caramels today. I wanted a caramel sauce. And I also did not feel like dealing with a candy thermometer.

Making this sauce was a process. First, I had to boil down 4 cups of fresh apple cider until it's about 1/3 to 1/2 cup. Then I deviated from the recipe, so all hell broke loose. But it's also different when I am in the kitchen, because the only downside of failure is a waste of perfectly good ingredients. So I just plugged away and sure enough, I managed to make a thick, apple-intense caramel.

On my next day off, maybe I will figure out what to do with it.

***


To switch gears a little, in my last post, I was writing about how the choices we make come with a price and we have to pay for our dreams, and the artist formerly known as piedpiper pointed out that this is more of a universal plight than I had perhaps suggested. He is right. And I was reminded of it this week, because someone very near and dear to me came out of the closet. It broke my heart a little that he felt he could not tell anyone sooner, and it was heartrending to hear that his family had put a lot of pressure on him not to tell anyone about it. He sounded so happy when he told me, and I realized how this must have weighed on him for such a long time. Already, he is having to pay a lot and in his case, it is not even a dream he is living, just his life.

Wednesday, November 12, 2014

good is better than perfect

Sometimes, this work gives one pause. Okay, not sometimes. All the time. But for different reasons, at different times. Sometimes, it's the work itself, sometimes it's the system in which we practice, and sometimes it's the repercussions of the work.

There are some matters which I find difficult to articulate for two distinct reasons- 1) it is so specifically personal that I am not sure I should be sharing it and 2) I have an irrational fear of being misunderstood- irrational because who cares and also hardly a handful of people read these words and most of them are fairly non-judgmental types.

For several years in this blog's history, actually, I wrote in an abstract away about this Goal I had, this big dream I was pursuing, and I knew, even as I was writing about it, that it would be a letdown when it was discovered that all I wanted to was become a physician. In some ways, the most unoriginal idea a brown nerd could dream up, really.

So I have no coolness factor. Oh well. That is no surprise, that has never been my area of expertise. What I did have was a deep certainty that I was doing the right thing for myself. And it is a good thing I did, because it was a long play. I mean, a longgggg play. Studying for the MCAT (while working full-time), going to medical school and 'carelessly' tossing away many of my savings in the process, three years of indentured servitude as a resident, all to get to this point.

All for the privilege of treating cancer patients. And it is a privilege. I can say that without a doubt, without reservation, and there are days when my rib cage feels like it is going to crack wide open from how full I feel from the satisfaction of this work. That is true.

But here is what is also true. This choice has cost me. It has cost me money, that is probably the most trivial of the losses. It has cost me friends. It has cost me family. It has cost me my own health. These are things we joke around about as physicians. But these are very real losses, and they exact a price that cannot be quantified and cannot be recovered.

Many, many years ago, I was still trying to figure all of this out, what I was supposed to be doing with my life. I knew I was not supposed to be working in a chemistry lab synthesizing molecules someone else told me to make. So I thought what I needed to do was get my PhD in chemistry. I started working on a research project in my spare time, after work and on the weekends. And I will never forget that my friend K casually remarked that she had stopped inviting me to things because she figured I would be too busy. It crushed me. I suddenly felt like I was really missing out, like the sacrifice of trying to pursue my PhD was too great to give up happy hours and weekends with my friends.

I trusted that feeling, I trust it still. When I decided to go to medical school, I kept giving things up, one by one, and it was frighteningly easy to do. Some of it is by design. Medical school is a wrecking ball, is a cult, is the Borg, is a hurricane. Medicine is a tidal wave that sweeps you out to sea, you drown and after a while, you learn to breathe under water, that is what I think.

This past weekend, after a particularly taxing week that made me question my stamina to complete fellowship and come out of it a competent oncologist, out of the blue, two friends of mine from the east coast texted me. They were drunk at a pub crawl. An annual pub crawl, a pub crawl I used to attend with them, many a year ago. They were planning an impromptu trip to New Orleans, and did I want to come?

Yes! I wanted to go. I missed them. I missed the outside world. My patients make me miss the outside world when I talk to them, and they tell me about their trips and their family and their dogs and their hobbies. They remind me of all the things I have set aside. So I wanted to go, and I cheerfully suggested February, when I had the sort of schedule that would allow me to take some time off.

My friends thought this was funny, and pointed out they were thinking more like next weekend. I had forgotten the meaning of impromptu, see. There is little in the way of spontaneity when you are a fellow. You have a schedule and you have responsibilities. They suggested December, and I thought about the patients who were scheduled to see me then. I am their doctor. I have obligations.

Everyone has obligations. Children. Pets. Mortgages. Everyone has them in some form. This time, I was not crushed when I told my friends I could not escape to the Big Easy on a moment's notice. I was sad. Because I miss my friends, and in an ideal world, I would love to be able to take off with that kind of spontaneity. But dreams have a price, and I knew, right from the start, that I would have to pay. So I have. And I will not apologize for that. As I have stated, there is nothing I want to do more. If I won the lottery today, I would do exactly this job. It is an obligation, this work, but it is a responsibility I have wanted, a purpose I have craved. I cannot pretend to regret that.

But what I will do is try. Not try 'to have it all' because I think that is a dream that we are fed to feel constantly like we are not succeeding, like we are something less. There is no having it all, there is no balance. Life is too messy for that, and chemistry has taught me that equilibrium is a dynamic state, that we are constantly being pushed in one or other direction away, but there is a pull, and it is not a pull away from the center. So I am just going to try not to let go of everything, not to be quite so weightless. I am going to try to find that steady state.

Saturday, September 27, 2014

caught between the scylla and charibdyes

A patient of mine- and now I really know what it means, for a patient to be mine, because he is mine, my responsibility more than anyone else's- came to my clinic yesterday, huddled in blankets and pale and miserable. He had been discharged from the hospital less than a week prior, and had a terrible hospital stay. He has a fairly rare tumor, and he was admitted to the hospital to undergo a cycle of chemotherapy, but ended up staying in the hospital for nearly a month because of a number of complications.

I was supposed to see him to assess whether he was ready to be admitted for another cycle of chemotherapy. I had seen him two weeks before, and he was not crazy about being stuck in the hospital, but he was smiling and joking around and frequently holding my hand. Yesterday he was irritable and weak and growling about not wanting to go back to the hospital.

In clinic, you're always on a schedule. There are always patients waiting to be seen. There is always a tightrope of trying to be present, mindful in the moment of seeing a patient, give them your undivided attention, but keep them focused enough to not fall far behind schedule. Then a patient sits in your office looking miserable, with low blood pressure, a fast heart rate, and you know that your afternoon is about to be derailed.

But that would be fine. With the help of one of the nurses, we cajoled the infusion center into giving this patient IV fluids, an attempt to stabilize him so that he could avoid being hospitalized for the day at least. An hour later, I checked on him between patients and he was feeling a little better. And then we had what I can only characterize as a futile conversation.

He was looking at me like I was plum crazy when I broached the topic, and I didn't really blame him. But his situation is so complicated that we are stuck trying to make impossible decisions- subject him to the brutal chemotherapy regimen that clearly causes him problems, or let a very aggressive tumor continue to impinge on some rather vital organs. This is the conversation we have with cancer patients all the time- it's the 'how do you want to die' conversation and it's the hardest of conversations, especially when you're in your first year of fellowship. It's a difficult conversation to have when someone is feeling well. When they're feeling this poorly, it's very nearly worthless.

A lot of people view medical oncologists as chemo-pushers, as physicians who will administer toxic medicines to their patients even if they look and feel terrible. I don't view myself that way. I have no aspirations to become that sort of physician. I don't believe in treating patients with medicine just so that you feel you are doing something. There's a saying one of my former attendings used to quote- when in doubt, do nothing. And I stand by that, usually.

But here in the grey zone, in the alleged cutting edge, it's not so much doubt as uncertainty. We're supposed to weigh the risks versus the benefits of providing a therapy. Many times, that is an easy decision to be made, or an easy choice to outline for a patient to make. But we sat there, my patient and I, and neither of us knew what to do. Neither of us could make a decision. He was looking for promises that I couldn't provide him. He was looking for me to push him in one direction or the other, but there is no good direction for him. I had told him from the beginning that any treatment we gave him would be to try to let him live longer, more comfortably, but it wouldn't be a cure, it wouldn't drive the cancer away altogether. But it wasn't hard to tell that he was struggling with his own uncertainty. He wasn't ready to die, he wasn't ready to consider the idea that he was already in the process of dying, so he focused on feeling miserable in the moment, in fixing that, and the matter of dying from cancer was just going to have to wait until next week. He won't be feeling much better next week, of that I'm sure. But maybe one of us will have more of an idea of what to do. That is my almost absurdly unrealistic hope. Maybe next week, I'll be a better oncologist.

Tuesday, August 19, 2014

your position is pivotal

For the past week and a half, I've been trying to figure out why the ALS ice bucket challenge is bothering me. Initially, I thought it annoyed me because it was one of those typical online activism deals that lull people into thinking they're doing something when they're really not. But that's not the case- the challenge asks people to donate and raises awareness and has significantly increased research funding for ALS.

And we live in very exciting times for ALS and other neurologic conditions. It's a field in its germinal phase, with so much to be discovered, so there is very real hope that with proper funding and devotion of research efforts, there could be better treatments to these very debilitating conditions.

So raising funding and awareness for ALS should not upset me.

Yet it has been upsetting me. All of this week and last, it has been upsetting me. Then I recollected something.

This was in the late 90s, and I was working on the east coast, and I had this coworker MM who was Serbian. At that time, I'll be quite honest, I didn't even know that. I thought I was a real hotshot for knowing she was Yugoslavian. So it was coming on the weekend, and somehow I was always the person trying to goad us bridge & tunnel crowds into Manhattan to do something, and that weekend was no exception. Friday night, we were young, I sent out an email to a bunch of my friends and coworkers asking them to go out dancing. Everyone wrote back except for MM.

Finally, the day before we were going to go out, I'll never forget, MM wrote back a short, but positively scathing reply, and I'm paraphrasing here, but she wrote something very close to the effect of 'how can you expect me to go out dancing when NATO is bombing my home town?'

I still remember this very short, very sharp email to this day because I recall that I felt sucker punched by it when I received it. At first, I felt certain I was the victim. I was just trying to get some friends together. I wasn't in charge of those bombs being dropped. Not like they asked for my vote. Not like I would have voted for it if they had. My, she was sensitive, it seemed. And given that there was nothing any of us could do, what would be the harm in going out and having a good time?

Well. Wasn't I an idiot in my youth?

There was nothing wrong with sending out an email to go out dancing, or wanting to go out dancing, even in the context of bad things happening elsewhere. If we all froze every time something bad happened in this world, something truly horrifying even, we really would mostly be homebound and petrified.

But, there was also nothing wrong with MM's outburst. In fact, it was a 100% justified reaction, and it was borne of anxiety and heartbreak and horror. And her outburst was an opportunity. To understand. To reflect. To learn. Not that she was supposed to be the great Serbian educator, spreading her knowledge of the situation there to all her little disciples. In fact, MM and I never talked about it except that I wrote back a short apology, which she accepted just as briefly, and never did we speak of it again.

It was my job to figure out why the whole situation was so upsetting to her, my job to get it. From her vantage point, it was so obvious that even questions about it revealed my ignorance and unmasked her frustration further.

I know it's quite a leap to make. But for me, when I see those ice bucket challenges on Facebook, I want to write back to all of them with a similar terse rage-filled reply of "how can you ask me to throw an ice bucket over my head and raise awareness for ALS when an entire subset of our population is being mistreated systematically?!?" And I sort of don't feel like explaining myself any further. I suspect my rage pales in comparison to that of others. But it's the job, our job, to acknowledge that rage, to get to its roots. Ignored, it just grows exponentially.

***


Here are some statistics. Something to mull over.

- The reported incidence of new diagnoses of ALS yearly is 5,600 in the USA.
- It is the cause of death in ~2 of every 100,000 deaths in the US
- Who predominantly develops ALS? White men.
- In New York, just New York, in 2013, thanks to stop-and-frisk and other major problems with the alleged protect-and-serve police force, New Yorkers were stopped by police 191,558 times.
- Of those, 88% of them were totally innocent.
- Of the total, 104,958 were black. 20,877 were white.
- According to census data, in 2011, the death rate for non-Hispanic white men from ages 25-34 was 147.5 per 100,000. For black men ages 25-34, the death rate was 212 per 100,000. I repeat: 147.5 vs 212. Make that non-Hispanic black men and that rate goes up even further to 226.7
- By the way, you know how ALS is the cause of death in ~2 of every 100,000 deaths in the US. Guess what causes ~10 of every 100,000 deaths in the US? Injury by firearms.
- A baby less than a month old - 3.45 white babies of every 100,000 die. 7.45 black babies of the same amount die.

So you know. You tell me what needs more awareness. You know... it's not a zero sum game, sure, but then again, it kind of is. That's how things work. That's how our current media environment and our current social environment works. The most popular, the most sensational thing, it bubbles to the top and everything else fades. It's not wrong- to raise awareness for ALS, to engage others in the same attempt.  You're entitled to your celebrations about the money you've raised. But so am I entitled to my rage about the tradeoff, about the things that are ignored in preference.

But I really just wonder. There are plaguing questions that irk. Like mainly-- why isn't every single person who is raising awareness for ALS raising awareness for the inequities that are simply unacceptable in this country, in these allegedly modern days?

Wednesday, August 13, 2014

dirty his hands, it comes right off

This is just a quick additional thing I have to get out of my head. A couple of years ago, I was sitting in a seminar about racism, institutional and otherwise, sitting with a bunch of very bored interns who were suffering through it as a necessary evil. Many of them thought it was a waste of time. I was inclined to agree with them, mostly because I don't think the seminar changed anyone's outlook, since it was preaching to the choir for some of us, and easily tuned out by the rest.

Anyway, though, there was a statistic that was quoted, and I'm not going to quote it correctly, and I'm too tired to hunt it down. But it had to do with the amount of time people spend thinking about race. The result of the research showed that the average white person thinks about race hardly at all compared to a person of color who thinks about race several times a day.

And that is very, very true. I think about that every time someone makes the always-irritating 'I don't see race' remark, because that is such a sign of privilege, to have the luxury not to think about race. I always just want to reply, 'how nice for you.'

It's exhausting. I truly, honestly despise how often I think about it, about being not-white, and not-male. And let me tell you, I myself am speaking from a place of extreme privilege, I am well aware. I have never been treated ludicrously by the police. I have not been shot. I have not been tear gassed. I live in a part of the country where I hope we would not tolerate this Ferguson noise. But then again, there was Oscar Grant. So who knows really.

And that's the thing. We just can't stop thinking about it.

Tuesday, August 12, 2014

hot water bleeding the colors

It would be so easy to return to blogging by talking about the new television show The Knick, which filled my head with thoughts for its full one hour.

It would also, in a different way, be easy to talk about the death of Robin Williams and talk about depression. Even though it would be an uncomfortable topic, and it would get too personal, too quickly, it would be easy because it's familiar. It's something I understand all too well. When people write of his death as sudden or shocking, I'm not sure I share that sentiment. Yesterday was a sad, sad day for the entertainment industry, and for those of us whose first taste of American television was Mork & Mindy, but it was something, nevertheless, I understood. Depression is a horrible disease; so is cancer. But it is a disease, and I understand it, and I know how not everyone can survive a disease over time. I know that all too well in my business. I know that all too well personally.

But what is much harder to write about, because I can't write about it coherently, not even a little bit, is this goddamn useless excuse for a country. See, that's the garbage that comes bubbling up into my brain when I start thinking about Ferguson. It's not just Ferguson. It would be so convenient, and it's the way of the mainstream media to always make it just about Ferguson, or just about Trayvon Martin. Special circumstances. A one-time thing. Complicated.

See. But it's not that complicated. It's just simply horrible, and I can't write a sensible thing about it, not one, because all I see is rage and ugliness and this frustrated, weary, defeated anger. Like I just give up. Like who would ever have a child in this country? Like who bothers to fight in this stupid system?

There's something that's happened to me in the last several years, since I have become a physician. It is a bit different from the normal course of a physician. Because most people start medical school when they are quite young and they are just forming an opinion of the world. And so they have some opinions, perhaps, and then they have many more based on their experiences in the medical profession. For me, it's been a little different. I knew who I was when I went into the field of medicine.

But here's the thing- I knew who I was, but I didn't know who other people were, not completely. Oh I did for a little while. For a brief period of time, I worked in a research lab in New Jersey, and I was the little meek Indian nerd mixing solvents in the corner, and because I was quiet, I would hear all manner of ridiculous talk about forming a militia and Hilary Clinton being too big for her britches (this is back when she was the First Lady, whooo hoo, the memories) and how people were making too big of a deal about this OJ thing. But that was just a brief glimpse, and I thought they were just some lab nuts, because I got into the corporate field where people largely keep such opinions to themselves. And then I moved to San Francisco, and at that time, people were comparing Gavin Newsom to Ronald Reagan so I was working with a bunch of folks who were genuinely, truly surprised Kerry lost the election.

So I wasn't really prepared for what happened when I became a physician. I had always been a little bit of a listener, because I was always interested in what people were really thinking, and I had found that if you kept your mouth shut for long enough, people's true natures would come out. So the last several years, well, I have seen some things. It's a weird relationship. People just give you their two cents. I don't know why. It's not like telling your doctor that climate change is a hoax has any bearing on how they treat your diabetes or your multiple myeloma. Still, I don't know, I guess because it's a safe space, when that door closes, when it's just you and your physician, the truth must out.

I don't know why I'm writing all of this down. I guess to say- I've seen inside the minds of a lot of people, and we're broken. Not all of us. But more than there should be. It's 2000-and-freaking-14 and I've still got to listen to a pack of white men tell me that Obama's a racist who only cares about black people. I still have to patiently explain to these old white men that I was born in America, and even after I've explained that, they've still asked me if I "plan to go back to India?" Oh, but it's so, so much worse than any of that. My colleagues have made disparaging racist remarks- which they attribute to working in an environment where we see minorities 'take advantage of the system.' Bull-freaking-shit. The system has taken advantage of them. Our entire system is so broken that our most vulnerable population, socioeconomically, racially, are set up to be the sickest, and to have the least access to proper preventative healthcare.

This is around the time that my brain starts to feel close to stroking out.

There is subtle stuff too. Like how the white male in a program is encouraged and mentored and pushed to succeed, while the minority is scrutinized or left to his or her own devices. But there is just that one case, right? It doesn't apply to every place, right? There is subtle stuff in treatment too, like how there are disparities in the outcomes of non-white patients, but ohhhhh, we can't attribute that all to racism. It's just one study. It's just one outcome. And then another, and then another, and then how many apples have to hit Newton on the goddamn head before he starts to think there's something to gravity?

This is why I haven't written. I can't. Not without losing the thread, without going off kilter. I can't talk about it, because I would be dismissed as ranting. Or better yet- a hysterical woman of color, that's pretty much the best way to get invalidated out there. And anyway, I don't know what to do anymore. I don't know what it will take to change things. I don't know if anything will change. Whatever is all I can summon to the audacity of hope. You be audacious. I'm inconsolable, and angry, and defeated, and I don't even know what I'm trying to say anymore, so I'm just going to stop. But not in my head. I'm not going to forget Brown or Martin. I'm not going to forget the Japanese kid who got shot for jaywalking when I was in graduate school (a solid 10+ years ago, in California, I might add). I'm not going to think of them as just one case.

Thursday, June 05, 2014

and it's getting nearer, soon it will all be true

As the Monty Python quote goes, 'I'm not dead yet.'

Real life pummeled me but good the last few months, the final push before residency ends intermingled with personal drama. Distracting me from the 'what's it all about' that usually occupies my mind at times like these. Because in my life, because of these odd back roads I've taken to get to where I am, there have been a lot of beginnings and endings, or chapters, if you will.

I've had this theory, and maybe it's a theory that only applies to my life, but I think there are but a few people you can hope to carry along with you as precious from every chapter of your life. I've always held this belief, but I think it's become more nuanced for me now. Because there are people in my heart from different chapters in my life nowadays who I haven't spoken to in years- and that is okay, because such are the realities of life, time zones, delineating circumstances.

Even though I've always had this theory, I think I expected to come away from medical school with a solid handful of people that were mine. Instead, it turned out to be one person, and it wasn't the person I expected. But it was the person who probably understood me (and still understands me) the best from those days. There were other people to whom I thought I was closer. But they faded away, or turned out to be false, or whatever it was that actually happened- they were gone in the end.

When I started residency, I was more wary. I expected to just keep my head down and work. I didn't take stock of the other residents the way I did in medical school. The work was plenty enough to keep me busy, too busy to worry about likemindedness and comraderie. And then- it just happened. And still, it took a while, it took some evolution, some shuffling of chairs, but in the end, there are more than I expected who really get me.

Sometimes I wonder how much of that is the world, and how much of it is the barriers I put up against the world. I've always been someone who gets blue and brooding when people don't understand me, even while knowing that part of the reason is that I don't explain myself, I don't show myself. I think the maintenance of this blog over the years is probably a perfect example of that- I very much doubt most people who know me IRL would guess that I spend (well, used to spend) time writing, contemplating, musing. And that has always been okay, because I haven't necessarily needed someone to understand everything about me.

Yet, I have to say, it's something. It's one thing when you're in a romantic relationship, and someone puts up with all your nonsense. But it's quite another to have friends who have seen you at your worst, when you're really on the verge of falling over the edge, and for them to have this breathtaking grace of being there for you. Not just that- but letting you be there for them too. The latter is something I've realized more and more as I've gone through my medical training. It may be the only thing I've really, truly come away with, this bit of wisdom- that you are doing your loved ones a favor when you let them help you in any small way.

I suppose that's what I have learned from taking care of patients these past three years of residency too. A lot of residents get burned out, talk about how thankless the work is, how the benefits have now been outweighed by all the burdens of medicine. I get that. But I have spent time talking to my patients, talking to their families, discussing impossible decisions about the last days of their lives, and I never feel like it's a weight on my heart. It's a strange profession these days. Patients have increasingly unrealistic expectations of their doctors, and doctors in turn have unrealistic expectations of their patients. I've realized that so often, patients actually are really in charge of their own health. And I've also realized that they deserve the credit more than I do, more often than not. But none of that really matters to me in the end. I just like my job. I like the being there. They need me, I need them, whether either of us likes that.

Anyway. I'm getting my head screwed back in straight, and I'll try to blog more. But it occurs to me that the blog has been this strange chapter that is separate from the rest of my life, that intersects other chapters, neither a prequel or a sequel, almost just the same tale told in a different voice. And this chapter too- I'm lucky to know some of you from this chapter, I am sorry if I have taken some of you for granted, but you mean a lot to me too.