Today is Mesothelioma Awareness Day. IamA radiologist who got diagnosed with mesothelioma at age 32. I've since spent >20 hours in the OR, a month in the hospital, was on dialysis for 3 months, had a robotic thoracotomy last month, and just sta...
You may or may not remember me from a while back. I posted an AMA about all of this back in September of last year, which you can read here. Let's also get the housekeeping out of the way: proof from today which you can compare to my proof from the first time.
If you’re not aware, today is actually Mesothelioma Awareness Day, so I figured this would be a pretty good way to raise awareness for mesothelioma. We’re not all geriatric smokers towing around our oxygen canisters!
If you can believe it, this is the short version of my story. I've actually written almost an entire book about this, at this point, and the Mesothelioma Applied Research Foundation has been publishing my chapters as blog posts on their site. You can get started with reading it right here, if you're interested. It's broken into readable/digestible chunks that actually work pretty well.
I'd really love any constructive feedback you guys might have about it. My goal is to one day try to get it published, but I'm not sure if any publishers would take me seriously. What do you think? Interesting book? Garbage pulp-fiction? I honestly can't tell. Would you buy and read this book?
If you'd like to do something to help for mesothelioma patients, consider changing your charity on smile.amazon.com to the Mesothelioma Applied Research Foundation.
Anyway, back in March of 2016 – just a few short months after I got engaged to the love of my life – I was diagnosed with peritoneal mesothelioma. What the hell is that, you might ask? It's a super rare cancer of the lining of the belly. Whenever you say, "mesothelioma," everyone thinks lung cancer and asbestos exposure. It turns out that you can get mesothelioma from a variety of places in the body, and that the lung kind is just the most common and most strongly associated with asbestos exposure. I've never been exposed to asbestos, to my knowledge. I'm just a lucky guy.
For years leading up to the diagnosis, I'd have these weird episodes of vague abdominal pain and nausea. They'd usually go away on their own after a few days, or I'd feel better if I threw up, but the symptoms were so infrequent and non-specific that I didn't really think about it too hard. It didn't sound like any diseases I'd ever heard about, and I was a doctor, so I knew things, right?
Well, eventually it dawned on me that there was something more going on than just the stress of residency hurting my delicate feelings. I went to the GI doctors and they put a camera down into my stomach. They saw some inflammation in the esophagus (food tube), and they took a biopsy which showed eosinophilic esophagitis, which is basically asthma of the esophagus. So we had an answer, or so I thought. This was about a year before my actual diagnosis.
Over the course of that year, the episodes of pain got worse and worse, until one day I had focal pain and swelling in my right lower quadrant. I thought I was having appendicitis, so I went to the ER to get a CT scan, and that's when we found out something was wildly amiss. I had abnormal fluid (ascites) all throughout my belly, and there were abnormal masses along the lining of the abdomen, and my right colon was grossly thickened and irregular. It was the radiology equivalent of a dumpster fire.
So after a work-up that involved cameras down my throat and up my butt, we finally got the diagnosis of peritoneal mesothelioma. Here are some fun facts about peritoneal mesothelioma that you might not know: it exists. The average age at diagnosis is about 50-55. The life expectancy for people who can't get surgery is about 6-18 months. It's super rare, about one case per million people per year. There's a saying in medicine that goes, "if you hear hoof beats, think horses not zebras." Meaning, if someone has a common symptom, the diagnosis is probably pretty common as well. Peritoneal mesothelioma isn't a horse. It's not even a zebra. It's a freaking unicorn.
At the time, they didn't think I was a surgical candidate. They thought I had too much disease. But, sometimes the imaging doesn't 100% reflect the reality of the situation, so they put some cameras in my belly to take a look, and when they did that, there wasn't quite as much disease as they originally thought. They decided that I was, in fact, a surgical candidate. We'd try a two-step approach, where they'd take out as much as they could during the first surgery, but they leave in anything that would be too technically challenging to remove, or which would necessitate removal of an entire organ that they wouldn't really want to remove, like a stomach (very morbid procedure). Then, we'd do chemotherapy in the belly to try to shrink it, and then we'd go back for a second surgery a few months later to try to take out the rest of it. Before all of this happened, I used to say things like, "I wouldn't let a surgeon touch me unless I were literally dying." So hopefully that will give you a sense of how serious this was, because more than anything else in the world, I wanted to go to surgery.
So we went to surgery, and they took out a bunch of stuff: spleen, distal pancreas, gallbladder, portions of the liver surface, half of my colon, all the lining of my abdomen, and all the masses they could get out. It took about 12 hours. Also during the surgery they did this thing called HIPEC, which is heated chemotherapy in the belly. The idea is that we can physically remove bulky, visible disease. The chemo is to take care of the microscopic disease that we know is there but can't see. It's heated so it penetrates the cells better. But even 12 hours wasn't enough time to get it all out. We'd have to save some for round two. There was a golf-ball sized nodule near my stomach that they had to leave it, because my surgeon was worried that if he tried to take it out, I'd end up losing my stomach. That's something you really don't want, for a variety of reasons.
Meanwhile, and even though we didn't know it for a few days, the chemo they used during the HIPEC was absolutely wrecking my kidneys. A few days after surgery, I went into severe acute renal failure. Normally, for an average man, your creatinine (a waste protein excreted by your kidneys) is about 1 mg/dL. If you were working outside and got heat stroke to the point that you needed to come to the ER, your creatinine might be 2-3 mg/dL, and something like that would probably buy you at least one night in the hospital. My creatinine eventually peaked above 10 mg/dL which is what we, in the medical field, call "pretty fucking bad."
A few days into the hospital stay, I started dialysis and would be on that 3 times a week for about three months. Obviously, with dialysis, you need some way to get blood in and out of your body so it can get cleaned by the dialysis machine, so they placed what's known as a "tunneled line." Basically, it's a long-term IV in one of the big veins in your body, but then instead of coming out of the skin right where it goes into the vein, the tubing is tunneled under the skin (but outside of the vein) for a few inches so that it (1) doesn't come out right at your neck and (2) greatly lowers the chance of bacteria getting into the blood stream. People can have tunneled lines for months and occasionally years. Regular IVs only last a week or two at most, and are also way too small to use for dialysis.
I was in the hospital, in total, for about 10 days during the first surgery. About half of that was in the ICU. I could go into great detail about the nature of patienthood and hospital admission, but we'd never finish the overall story in a reasonable amount of time. I write about this a lot in my book, though. Between the renal failure and all the drugs I was getting for pain, I was pretty loopy in the hospital and I remember having hallucinations and talking to people who weren't there and all of that fun stuff. But after about a week, things were getting better and I was just sitting around getting dialysis, which you can also do at an outpatient center. It was finally time to go home.
One thing they don't really tell you about the dialysis catheter is that it's a big honkin' hose, not some little peripheral IV tubing. You need to move a lot of blood during a short time, so you need a large caliber tube to do that. And the larger the caliber tube in your vein, the more chances for problems. Problems like blood clots. And I had basically all of the risk factors for blood clots, too: recent surgery, physical immobility, cancer, indwelling foreign body (the tube). The only one I was missing was pregnancy, which was good because I was in no shape to be pregnant, even if I wanted to be. So one day after dialysis, my arm and neck started getting tight and swollen: I had a blood clot in my neck and arm veins.
So I went to the ER. They started treatment without getting any scans because it was such a slam-dunk diagnosis. They put me on a heparin drip, which is a blood thinner that works immediately, and started me on oral blood thinners that take a couple days to kick in. I already knew I was a lucky guy, but I found out that day what a unique and special snowflake I really am: turns out, heparin doesn't work on me. Nothing bad happens when I get it, it's just that nothing at all happens when I get it. So we wasted an entire day in the hospital figuring that out. I was in the hospital for a week just waiting for the oral blood thinner to kick in.
They finally let me go home from that one. Now, I was going to dialysis clinic every Tuesday, Thursday, and Saturday mornings until about noon, and at least twice a week I'd also have to go to the anti-coagulation clinic to make sure my blood clotting times were in the therapeutic range. Not too thin, not too thick… just right. That's how we like our blood thinner levels.
Your whole identity turns into being "a patient" when you're in a situation like that. Keep in mind that the surgery was at most 2-3 weeks prior to all of this. My surgical wound wasn't even close to being healed. I could still barely walk around a Bed, Bath, and Beyond without having to take a few rest stops on the display furniture they had set up. For months, I felt like my life was nothing but feeling vaguely bad and going to doctor's appointments. Where, of course, you play the, "hurry up and wait" game.
Anyway, it was at one of the next dialysis sessions where the next problem cropped up. This time, it was at the end of one of the treatments, and I had to go pee (which is slightly ironic because most people on dialysis don't make a lot of urine). Well, when I got in the bathroom, I noticed that my undershirt was wet and there was a hint of this putrid odor in the air.
So I opened up the abdominal binder I had on, and the dressings were soaked. With pus. It was a giant purulent mess. Just as an aside to any young medical people, infected wounds with pus are described as being "purulent." You can't write the –y form of "pus" on the chart. Try it some time, and you'll see why. Anyway, this stuff is just oozing out of my abdominal wound. I cleaned it up the best I could, attempted to make a pressure dressing to keep it in one spot, and called the surgical oncology office. They told us to come on by.
One of the residents came to see me and confirmed that yes, I did in fact, have an infected surgical incision. Once you get something like that, it has to basically fill in from the bottom with granulation tissue and heal up on its own. If you try to just sew it closed, it just leaves a potential space for bacteria to form abscesses.
So the resident took the blunt end of a scalpel and started probing the wound to see how much would open up. After it was all said and done, it was about 4 inches top to bottom, and about 2 inches deep. The deep layer had come open, too, and you could see a single surgical suture holding the two sides of my abdominal wall together. I could see my own intestines. I could have put a finger down the hole and literally touched my own bowel. I didn't, because that seemed gross and also like a really bad idea. But I could have.
So with wounds like that, you want to both pack and clean them, and we do that with "wet-to-dry" dressings. Basically, you get some appropriate material (eg, Kerlex), get it wet, and shove it in the wound. Then you let it dry, take out the material, and repeat the whole process over and over until it's healed. That way you're cleaning the wound every time you change the bandage, because all of the gross stuff on top comes out with the bandages, leaving only the nice healthy viable tissue underneath.
This went on for about a month. Things slowly got better, but for the longest time I couldn't take a shower because of all of this. For months, I'd sit on the edge of the tub and wash all of the important parts. You know what I'm talking about. I don't know about you, but a nice shower is one of my more favorite things in life (right up there with the pee shivers after holding it in forever). And sometimes you don't appreciate the little things like that until they're gone.
But life continued, as it does. I'd go to dialysis or Coumadin clinic 4-5 times a week. I'd change out the wet-to-dry dressings in the surgical wound 2-3 times a day. I took all of my blood thinners as instructed. Things slowly improved. However, we'd been holding off on chemo given all of the complications, and it was rapidly approaching time to start that.
I only had intra-abdominal chemo at first. We used carboplatin and doxorubicin and we'd alternate medications each week for 8 weeks of treatment - 4 cycles to use the oncology parlance… and don't "cycles" sound just so much more fancy? The doxorubicin was tolerable. It basically just made by belly hurt and made it difficult to stand up all the way, or lay completely flat, because the stretching really hurt. Carboplatin just makes you puke and feel like shit. You get used to all of it after a while.
Anyway, during the very first surgery, we had placed two intra-abdominal ports to access the abdomen for chemotherapy. We didn't really need two, but we figured it would be nice to have a backup in case one failed. And what would the chances be of both of them failing? Astronomically low, right?
As you may be deducing by now, I'm a pretty lucky guy. One of the ports just stopped working, so we stopped using it. The other port had its anchoring sutures come loose, and it started moving under the skin. It turned in a funny way underneath the skin, and after a few days of it "just" hurting pretty badly, it ended up partially eroding through my skin. A few days later, and through something of a minor miracle, one of the interventional radiologists was able to place a 3rd abdominal port, and it worked beautifully. This was about 5 months after the initial diagnosis, and it occurred to me that this was the first time that something in this entire fucked up process had actually gone according to plan.
Between the surgery itself, all its associated complications like the surgical wound opening back up, dialysis, the blood clot, the fact that heparin doesn't work on me, and the fact that both of my ports failed, I was pretty much done with all of this crap, thank you very much. I thought I'd handled it pretty well up until that point, all things considered. But when that freaking port eroded through my body wall, that was it. That was the straw that broke the camel's back.
So I went to go see them in clinic again shortly after that, and discussed everything with them. This was towards the end of July in 2016, and by that point the blood clot and the dialysis had pretty much resolved (although I now have permanent renal impairment and am currently at CKD stage IIIb). The debacle with the ports and feeling like shit from chemo had been taking its toll on me, and so we decided to hold off on more treatment for the time being. It was the first time since this whole process started that I finally got a (very welcome) reprieve from treatment.
Our wedding was coming up in about 6 weeks, and they were going to give me a chemo holiday and let me regain some strength before the wedding. And then, we were going on a kickass honeymoon to Cozumel! Woo! So that break came right at the perfect time.
Our wedding was the single best day of my life, hands down. It was a huge, fun, amazing party with all of our closest friends and family there to celebrate it with us. We played Bohemian Rhapsody as our final song, and even during the last song at the end of a very long night, the entire dance floor was packed with everyone singing along. It's one of my favorite memories from that night.
A couple days later, we went on an amazing dive trip to Cozumel. It was some of the best diving I've done (though my experience is pretty limited), and we had a fantastic time just spending a normal week with each other, far away from all of the bullshit of treatment and cancer problems. I made a video from some of the gopro footage I took, which you can see here. I hope you'll check it out! I put a lot of work into it, and I'm fairly proud of it.
I also need to stop for a second here and just tell you guys how amazing my wife really is. We had just gotten engaged about 3 months prior to my diagnosis. Not everyone is super excited about entering into a long-term commitment where you know the other person is going to be chronically ill. I even asked her, at the time, if she wanted to "stay in the game," so to speak. But, and this is why I married her as fast as I possibly could, she said something to the effect of, "stop being a ridiculous idiot, our wedding date is set, so you'd better get planning!"
My dear reader, I hope you will grant me a small courtesy here, and allow me to address Nicole directly, just for a brief moment. Nicole, you are the absolute love of my life. My source of unending strength. I love you in a way I never thought you could love another human being. I feel it in my heart. I know it, deep down in the core of my being. I love you. Now, and forever.
Thanks guys! Now back to the story! Once we got back from vacation, it was time to start chemo again. We had planned on doing a few more cycles, but when I started back up, it hit me like a ton of bricks. And, I was still planning on trying to take my radiology board exam in November, a mere 6 weeks away at that point. But as it often turns out, life had other plans for me.
A couple weeks after we got back, I started having a sensation of early fullness when eating, and I noticed my bowel movements were becoming less frequent. Then, I started having these increasingly severe abdominal pains that would kind of come and go, and I started throwing up. And I threw up some more. And even more. I must have barfed at least 6 or 7 times on the day we finally went to the hospital. I puked again on the car ride of the emergency room, but this time it was a little different. Instead of smelling like regular old vomit, it smelled more like fecal material. At this point, I was throwing up stuff so far down in my gut that it was in the process of turning from food into literal shit.
And so I was admitted yet again for another bowel obstruction. This time, I'd end up in the hospital for about a week before I finally went home. Once they get you stabilized, an admission for a bowel obstruction is pretty much you just sitting around asking for pain/nausea meds. Once you finally take a shit, they start advancing your diet beginning with liquids and moving up to more complex consistencies of food. Other than that, it's just a whole lot of sitting around your hospital room, so be sure to bring something to keep you occupied. The hospital is boring AF. But the bowel obstruction had totally destroyed my plans to take the boards in the fall. It looked like I was going to be a year behind, after all. Oh well.
The week before Thanksgiving of 2016, it was time for surgery 2.0. Remember, we'd left some disease during the first case so we knew there was stuff we had to go back and get. We were hoping that the second surgery would basically get everything out. But man I was scared shitless to go through the surgical process again. The first go-a-round didn't exactly go according to plan, as you've probably gathered at this point. One more bad hit to my kidneys and they're gone. They work okay right now, and they do their job, but only just. It wouldn't take much to push me over to permanent dialysis. And guess how excited they are to give a transplant kidney to a patient with known cancer (hint: they're not excited about that at all).
But, through what I can only assume is the grace of God, the second surgery was the most technically successful procedure we could have hoped for. They were able to get everything out that they could see. A bunch of areas looked "weird" (for lack of a better phrase) and so they biopsied a bunch of places, but pretty much all of it came back as treatment related change. And I got to keep my stomach, and I didn't have to have a colostomy or any other bowel diverting procedure. The recovery was a lot easier the second time around, since there were many fewer complications. The entire thing seemed to hurt a lot less, too.
But it's still really hard to eat after a big open abdominal surgery case, sometimes for months. I dropped down to a low of about 120 lbs which, for me, was pretty scary. I could make out all of the bones in my shoulders and ribs. I could see the individual muscles that constitute the quadriceps in my legs. My size 32" jeans literally slid right down my body. I had to by "sick clothes" just so it didn't look like I was wearing hand-me-downs from a guy 50 pounds heavier than me. It took me a good 10 months after that second surgery to get my weight back up to the 160s, and even now, if I don't pay attention and eat properly, I'll just start losing weight without noticing it. It sounds cool until you realize that that's how people with this disease die – they literally can't get enough food intake to meet their metabolic needs, so they get cachectic and waste away and die. So yeah, it's kinda fun being skinny without trying, and I can eat whatever I want pretty much, but there's definitely a darker side to that story.
So in March of 2017, I started back at work, officially, full time. I basically ended up sitting out an entire year of residency because of this, and now I'm going to graduate with the class that came behind my original one. My new class was just starting to study for the boards, too, so it was a perfect time to jump back in and try to get back up to speed. I felt like a complete moron for a couple of weeks when I first got back. Turns out that if you don't do anything related to your job for a year, your knowledge level will atrophy. Who knew?!
And so I was freaking terrified of failing the boards. More than one of my attendings specifically mentioned to me that it "would be totally understandable" if I failed the boards (or something to that sentiment). Thanks for the vote of confidence, guys! But they'd been looming over my head for what seemed like forever at this point, and I just wanted to finally be done with it. So I studied for the boards just about as hard as I've ever studied for anything in my life. I read multiple books, some multiple times. I did thousands and thousands of practice questions. I studied any free minute I had at work, and basically from the time I got home until it was time to go to bed, for 3 months in a row. It was brutal, and exhausting, but fear of failure is a powerful motivator.
I found out that I passed the board exam on the same day that we did my first post-op follow-up scan. The day started out pretty great – I passed my boards! Hooray! But the PET/CT news was much less good. They found a few new nodules in my mediastinum right next to the heart, and they were metabolically active. It was highly probable that it was cancer, but the only way to know for sure is to do a biopsy. So I went in for a third surgery in August 2017 and they took out all of the nodules they could see. I was hesitant to do another surgery, because most chest surgeries are a pretty big deal, but my surgeon decided to use the DaVinci robot and so I actually only have 3 tiny little scars on the left side of my chest where they placed the access ports for the robot.
And, unfortunately, we weren't surprised when those nodules all turned out to be metastatic disease. I went to go see med onc again, and we decided to go ahead and do systemic chemo. So I'll get carboplatin/pemetrexed/avastin every 3 weeks for four cycles, and then we'll do another scan and see if things are better, worse, or the same.
This is the part of cancer care where can get very tedious, and you start to lose options for therapy as you try things that work to varying degrees of success initially, and then stop working. I still have a couple conventional treatment regimens to fall back on if this one fails, but after that, it's time to start looking into experimental trials.
My current plan (if one can even have plans in such circumstances) is to try and kick the can down the road a few years at a time until immunotherapy has caught up with the solid tumors. It's already done wonders in certain types of cancer, and they have mouse models of mesothelioma where all of this stuff works, too. So in principle we've got some promising leads. But with medicine, the devil is always in the details and we need to get a lot more data and refine this process more and more until it's truly ready for game day. But, I really do believe that, in principle, we're about to start making enormous strides in extending the lives of cancer patients.
And so that's where I'm at, about 18 months after my initial diagnosis. The day I got diagnosed, 18 months was about all the time I thought I had left, too. So I'm already winning in that sense, and I'm very happy to be where I am. I think it's reasonable to hope that I could get a few years of progression-free disease control out of conventional treatment before we have to move on to most experimental things. Of course, no one knows if they're going to be the person to beat the odds, or not. The only thing I can continue to do is hope and pray that I turn out to be one of the lucky ones.
I think a lot of people might find this next sentence bizarre, but in many ways, this thing has been a simultaneous blessing and a curse. The negative aspects of it are obvious, and we could discuss those ad nauseaum. I think the positive aspects are the more interesting ones, though. This diagnosis forced me to really tackle some existential questions about life and the nature of existence, and after much reading and thinking, I've found a belief structure that works very well for me and provides a source of strength. I've had friends from ages ago, or even just simple acquaintances, who have gone so far above and beyond what they had to do that I can never repay them.
Before this, I had always labored under the assumption that I'd been merely passing through life, with no one taking any serious notice of me one way or the other, and that I wasn't really making any meaningful impression on people, at all. I felt like I was always just "there," like a wallflower at a party. Present, but un-involved. Even that couldn't have been farther from the truth. People who were my medical students when I was an intern got in touch with me, just to see how I was doing. The entire radiology department set up a gofundme page for us and raised a bunch of money to help with the medical bills. People made us food, so we didn't have to cook. People got us gift cards to restaurants so we could go out every once in a while.
My interpersonal relationships mean a great deal more to me now than they ever did before. One thing I've noticed during all of this is the degree to which people really genuinely care about each other. For some reason, we just never say it when things are going fine. It takes a horrible tragedy like this to bring that to the surface. Well, I've since decided that's dumb. I've started telling people how much they mean to me in my life. You should try it some time. It's pretty rewarding.
I want to finish my residency and go practice as an attending back home. I used to put my career first, above everything. I was going to do interventional radiology and live in a big city with an academic IR department and do all kinds of cool cases! And it still sounds fun, sure. But after something like this, you realize that no matter how cool your job is, it eventually becomes just your job. I mean, astronauts probably get up on some Mondays and are like, "damnit I have to go to work today." There are more important things in life than what you do.
My family all lives in this one little town in Louisiana, and it just so happens that a group in that area is looking for a general diagnostic radiologist, so it's a good fit. My wife and I are trying to start a family. I've always wanted to be a dad, mostly because I think I'd be pretty good at it, and I hope that I have that opportunity. I hope I have the opportunity to work as an attending for a while so I can actually help people, and not be "just the resident" on the case. I can completely relate to what patients go through now in a way that I never understood before.
For a series of reasons, after the boards were (finally) behind me, I ended up on a block of mammography rotations all in a row. By the time it's all said and done, I'll have done 5 months of breast radiology contiguously. It's secretly a really great field. We get to use a variety of imaging modalities: x-rays (the mammograms), ultrasound, and MRI, and we can do image guided biopsies under all of those things, too. There's also a lot of interaction with the technologists all throughout the day, so you're not just sitting in a room alone by yourself just reading cases all day (there's a reason most radiologists are weirdos).
I also like it because I get to meet patients on a regular basis, often 20+ a week. Sometimes, it's to tell someone that they need a biopsy. Sometimes it's to actually do the biopsy, or the other minor procedures we do. But I can empathize with the patients very deeply now, especially young people who get stricken with this terrible disease. Not that I think I was a huge jerk before or anything. But after something like this, you just kinda "get it." It's immensely rewarding to be an integral part of the process that ultimately saves people's lives.
I also realized the other day, that when I started listing out the reasons I like breast radiology, those are pretty much the same reasons I wanted to go into IR in the first place. I think most people would say breast radiology and IR are just about as far apart on the spectrum as it gets, but I think they're more similar than people give them credit for. It's interesting how when one door closes, another seems to open. I'm just happy to have a job I love where I get to help people on a daily basis.
As for me personally, to the extent that it's feasible, I want to keep traveling and diving and seeing as much of the world as I can, before I kick the bucket. I've come to believe quite strongly that the things which provide meaning to our lives are experiences and relationships with other people, and I want to foster both of those things.
Basically, I plan on continuing to do awesome things with the people who matter most in my life, until the day I literally can't get out of bed anymore.