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Crosspost[X-post] Jean-Baptiste Kempf, VideoLAN president and lead developer of VLC, is doing an AMA on r/france

Sep 29th 2017 by Endarys • 7 Questions • 4061 Points

Hello, reddit!

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.

AMA!

Q:

What was the hardest part (mental/emotional/physical) of recovering from your injury? Thanks for doing this AMA!

A:

Years ago you gave a talk in Denver. I got an email from CLIO inviting Colorado users for a beer. About 8-10 users showed up. Just wanted to say thanks for the beer.

Guess I need a question.

How's it going, eh?


Q:

So, were you or a loved one entitled to financial compensation?

A:

part (mental/emotional/physical) of recovering from your inj

Hi! Those are all parts of the journey, I would say at first it was such a sudden shift in my reality that emotionally I was a wreck, crying every day. It was also mental, because I was battling thoughts of depression. Will I ever get married? Will I depend on people forever? etc... The pain was also bad... So I can't really say what was worst, but that they were all very much a part of the journey. Thanks for the question!


Q:

I remember that meetup! I think it was about five years ago? Thanks for coming out, and no problem, eh. If you ever make it to a Clio conference, I'll buy you another one. :)

A:

Sadly, I was not.


Q:

Hey David! Since your accident has happened, what has been your favorite place to go where you have shared your story?

A:

I love Clio, and I also really appreciate that you guys are constantly adding new features. I'm one of those users that is constantly contacting your support people and suggesting ideas that would make my life a lot easier, and I understand you have an internal "voting" system that helps to determine what new features will take the highest priority for development and implementation.

Have you considered making a short list of features (say, top 5) publicly visible? I'd love to have a sense of what I can expect next.

Also, please give me something to do e-signing. Please.


Q:

You sound like you've done a terrific job of pushing this behind you and still living life to the fullest. Do you think this attitude is inherent to your personality, or is this an attitude that you work to maintain every single day?

Thanks for sharing your story, by the way!

A:

ccident has happened, what has been your favorite plac

Hmm... Probably the Bijou Theatre in Knoxville. It's my hometown, and I knew quite a few people there. It was very special.


Q:

Thanks for your ongoing support, we always love hearing from our customers!

With the new Clio experience, we're trying to get away from one-off feature votes and trying to understand our customers' problems and workflows in a more holistic way—a feature-oriented view is a bit myopic.

If you'd be interested in getting on a customer interview with our product managers, let our support team know or shoot me a PM here and I'll be happy to put you in touch.

In terms of e-signing, stay tuned :)

A:

Do you think this attitude is inherent to your personality, or is this an attitude that you work to maintain every single day?

It's definitely something I have to work at, and I don't always live up to my own expectations. But I've found that when your personal "compass" is pointed in the right way as far as your approach and outlook to life, you end up heading in the right direction, even if you make a few wrong turns along the way.


Q:

Have you seen Freya Markowski again since April?

A:

Obviously you see the legal field as a great place for technological innovation. Do you think we're going to be able to fully replace lawyers with technology one day? Contracts and other rigidly structured documents seem like something that could be negotiated between two computers once things are a little more standardized.

Yes, /u/orangejulius, I want to replace you with a bot.


Q:

What do you wish people would say or NOT say to you? I've read opinions from people with some horrible disease (especially cancer) write that they are absolutely tired of hearing the "But how are you really doing?" question and calling treatment a "fight" or a "battle".

Also, since I'm an anesthesiologist, what did you wish your anesthesia team knew or do differently for your surgeries. Did you have an ERAS (enhanced recovery after surgery) for your surgeries? Always interested to know, since anesthesiologists rarely get meaningful feedback from patients.

Thanks for sharing your story Dude! PS we went to med school together.

A:

I just skyped her today!


Q:

Geoff Hinton made a point that we're very close to realizing the algorithmic potential of current machine learning capabilities. When it comes to negotiating contracts, there's a level of nuance required that machines just can't provide.

We'll get to a point where we'll have easily automated tasks being done by computers, and the leading edge of consumer machine learning capabilities will get pulled into the practice of law, but you'll never be able to fully remove lawyers from the legal process.

A:

What do you wish people would say or NOT say to you?

Well, for me personally, I don't get upset when people try to say something nice/compassionate after finding out the diagnosis. They're just trying to be nice people, and it's not their fault that I might be in a shitty mood and take it the wrong way. I've heard other, very different opinions from other people with cancer, though. I think it depends on the person, really. Although, to be honest, the old "everything happens for a reason" thing is a pretty classic groaner to avoid.

As far as it being a "battle," I guess it is, kind of. But really it's more like just getting through each day. I operate about a week at a time now. I just look at the next thing on the horizon, take care of that problem, and then move on to the next thing. If you think about the overall situation too much you'll go crazy.

My anesthesia was pretty much the definition of "routine." General and then a dilaudid PCA + prn boluses for pain control. We didn't talk about the newer post-op regimens or things like an epidural. I do wonder if things would have worked out better with some of the more advanced anesthesia, but my pain control was adequate. I would have tried anything more they offered/recommended, but from my perspective, they treated all the surgeries as pretty routine cases.

PS we went to med school together.

Sweet! Geaux Tigers!


Q:

but she was negligent, the fact they didnt press charges is disgusting IMO. she ran a red light and almost killed this guy. She got a pass because of the " lets not punish the junkies and mentally ill" bullshit.

A:

I also would like a pair of socks.


Q:

Your story is so crazy! That's so much whirlwind in the diagnosis, treatment and all the complications!

As a primary care physician, it's very hard to work out the Zebras from the horses, let alone the unicorns. What do you think could have helped the initial diagnosis? Was there anything that you wish was done differently?

Congrats on the new job! All the best wishes to you and your family!

A:

ould have had to go to inpatient or som

Hi Hexxman. Thanks for the comment. And I totally agree that she doesn't deserve to be let off the hook. My reasoning was NOT because I wanted to be soft on a junkie. My reasoning was to help her, to show her that Love and Forgiveness are real and that she could have another chance. We had her do community service.

I really don't think jail would have been a good option for someone who already felt worthless. I'm not responsible for how she turns out, but I've done what I can to help. (FYI, she has been clean for a year)

Hope this makes a little more sense.


Q:

See above!

A:

What do you think could have helped the initial diagnosis? Was there anything that you wish was done differently?

Honestly, nothing.Maybe I should have put two and two together sooner. But I think with my non-specific symptoms and lack of risk factors and such, nothing was "missed" per se.

The only thing that is still a real kick right in the nuts is the renal impairment. I'm at CKD3b now, and all it's gonna take to make me end stage renal disease is one more serious hit to the kidneys. But even that wasn't an "error," just an unfortunate complication.

Also, thanks for the well-wishes! They are greatly appreciated!


Q:

Lmao, you definitely were!

A:

Young lawyer here in small firm (12 attys) who is having difficulty convincing my older, tech-adverse partners to move from Tabs and no practice management software to Clio. How do I convince them?


Q:

So as a radiologist do you get to input your opinion on things like X-rays and catscans taken of you?

A:

ld down his horn and I apologized with a wave. There but for the

Thanks for the response! That's great. I think in the analogy it's actually better to see Danny Devito as someone who needs help and has a problem (this puts the situation outside of yourself so you can see it objectively) and hope that he finds help.

And I've run red lights before myself.


Q:

I think the biggest thing is to get them excited about what's possible. Even getting one person at the firm to experience the advantages of the cloud can be powerful. Show them the mobile app. Show them how easy tracking time on it is. How easy generating a bill is. Building excitement is the most important part of building buy-in.

There is also a lot of perceived friction around the data migration process. We have now migrated thousands of legal practitioners to Clio. We can make the data transition seamless for the firm free of charge. We also make it easy to transition away from Clio if you decide it's not the right fit. Our main goal is to support legal professionals in maximizing their time and being successful.

A:

Officially, in the reports, no. Whoever is reading the study looks at it and dictates it without my input. That said, I can look at my own images, of course. I'd sometimes give them my two cents, but really they just care what the report has to say.

At first I went over everything with a fine toothed comb, but that gets pretty tedious after a while. I still flip through the images, but mostly I just go with what the attending says in the report.


Q:

You are amazing! I am still struggling to forgive the driver who almost ran over me and my daughter...I believe that big thing in your case was that she showed how sorry she is..I wish you all the best in your life. Keep that smile.

A:

Hi Jack, is there anything you regret in the early days of crunching to deliver the first few iterations of Clio. Additionally, anything you remember super fondly from those days?


Q:

Thank you for the post. Both my grandpa and great grandpa died of mesothelioma caused by working with asbestos, watching my grandpa go through it was the first experience that opened my eyes to the extreme pain some people must live with every day, and sobered my seven year old self right up. Good luck and stay strong.

What's the most benign looking/feeling early warning sign you can think of? If it ends up being what takes my father, I'd rather give him the best fighting chance he can have by being overcautious.

A:

thank you, and yes. that is a different type of forgiveness. I encourage you to read through this thread, I've certainly been informed!


Q:

My wife, Tonia, gave birth to our first child, Ian, the same year we launched Clio. I remember taking a customer call in the hospital shortly after Tonia gave birth to Ian, and realized that Clio was going to be so all-consuming that it would be a real struggle to balance being a present, engaged father to Ian while building a startup from the ground up.

I look back at that first year and it's all just one huge blur - I feel like someone hit "fast-forward" on my life, and it hasn't let up over the last nine years (and we've added two additional kids to the mix in the meantime!)

I know I missed out on some important moments of Ian's first year while working to get Clio out the door. I think this is a sacrifice a lot of entrepreneurs need to make, but I also hope that the lessons I've learned building Clio, and the positive role model I hope to become to Ian, will ultimate make me a better father to Ian than I would be had I chosen a different path.

A:

What's the most benign looking/feeling early warning sign you can think of?

First, I'm sorry to hear about your grandparents. This is not a nice disease to die from, and watching them go through medical treatment however long ago that was must have been pretty brutal, too. They didn't have a lot of good options back in the day.

I have the abdominal kind of mesothelioma, so my symptoms were different than people with the lung kind. I just had belly pain and vague malaise.

The problem with the symptoms of serious illnesses is that they overlap with the symptoms of not-serious illnesses. The first things would probably be pain and shortness of breath, or limitation of exercise capacity. The problem is, lots of way less scary things can cause those symptoms, too.

Basically, if they worked up everyone with some vague complaints to the full extent every time, our healthcare system would be even more expensive and inefficient than it already is. So we have to try to figure out whose symptoms are concerning, and whose aren't. We do our best, but sometimes people fall through the cracks just because it's not a likely diagnosis. Mine was a case like that. No one "missed" anything, per se.

Lastly, I would say, your case does seem to have a strong family history, and there's at least one known mutation (BAP1 I believe) that increases your risk for mesothelioma. You may want to consider asking for genetic testing for your dad (and/or yourself).


Q:

Hey David,

Given how you've been injured in a bike accident, do you think there are changes to the infrastructure possible which would help prevent happening this to other people? Greetings from the land of the bikes and the red light district!

A:

What is the best case for why I should wear Clio socks?


Q:

Pineapple on pizza or no?

A:

Great question: I think we should do everything in our power to fix the roads... And the light where the accident happened is actually hidden by a bridge until you're about 100 yards away. There's a light under the bridge on the side of the road as well, it's just weird though. So one thing would be to make that light more obvious.

Regardless, when there are humans involved, accidents will exist. It's our own responsibility to do our best to act in the way we want others to act: if you want safer roads, be an alert, safe driver


Q:

Do you enjoy warm feet? Do you love Canadian-based legal practice management software? Clio socks find a way to combine both!

A:

Yeah, but with pepperoni and not ham. I actually order that on a somewhat regular basis! My wife says I'm weird.


Q:

David, What has helped you heal and forgive? How has your daily routine changed?

A:

You're legal trend reports are amazing and contain a lot of market data that no one else really has been able to collect. (i.e. from actual practitioners via their practice management program) Will clio ever let researchers access the raw data itself?


Q:

The forgiveness I've expereienced in my own life, and the love I've received. And my days are actually pretty similar (I go the same places) but I just do things in a different way. Put clothes on a different way, still go to the bathroom a different way, etc... Thanks for the question!

A:

We treat our customer privacy with the utmost respect. As expressed in our Terms of Service, we would never share access with a third party. With that being said, if researchers ever wanted to see something that wasn't included by default in the Legal Trends Report, we'd be happy to have a discussion around that.


Q:

Platt!!! What are biggest hopes and goals now that you have experienced so much healing?

A:

I want to tell the world that I AM NOT A VICTIM. The point being that although I was a victim of an accident, if I responded as a victim (complaining, holding resentment, just sitting and being depressed about my legs not moving) I wouldn't be where I am today. I want to encourage others to fight whatever challenges they are up against, and not see themselves as victims, even if they truly are.


Q:

Your hair is gorgeous, what conditioner do you use?

A:

lol. It tends to do better the less I try to deal with it. but I've tried a bunch of different stuff, and it seems the more expensive stuff is better.


Q:

How did you find it so easy to forgive? What is your recovery like so far?

A:

see my comment to @trashtvqueen above. Recovery is pretty good, I'm walking full-time, even walking unassisted in the house! Very thankful for the recovery of neural pathways in my legs.


Q:

Is there anything you can't do at the moment that you used to do but are working towards doing again? On a side note, I think it is both courageous and amazing that you were able to forgive so quickly such an inspiring story!

A:

Thank you!

I'd love to play soccer/wakeboard/mountain bike. I need quite a bit more strength for that... But I'm working toward it! Who knows at this rate someday I might.


Q:

Hi David, I really just want to tell you what an inspiration you are! But, rules are I must ask a question... So here it is: have you done any speaking engagements talking about your accident? If so, what was it like for you? If you could do a TED talk about the power of forgiveness, would you do it? I'd love to see it! (I'm not affiliated with TED or anything remotely similar!)

A:

I have played shows where we show a 20 minute documentary of my story, and then I play an hour set and share more of the story. I'd LOVE to do a ted talk


Q:

Hi David! It's great you forgave her and surely the right thing, but in the process of forgiving, there ever were tiny little moments when you felt anger and/or resentment? If yes, how can you describe them?

Hope the very best for your recovery, from Italy :)

A:

Thanks Lee, I always have directed my anger/frustration at my legs, not at the driver. Definitely moments when I wish I could have my legs back to normal. Have a functioning bladder/bowels. But I don't let them linger, and neither do the people around me☺️


Q:

who'a your favourite Canadian?

A:

Probably biebs


Q:

Hey David! You can probably guess who this is by my handle! My question is this: has the accident affected how you are physically able to play music, as in mobility?

A:

ally able to play

Hey Gardner :) Ironically, I'm touring and playing more than before the accident! Just played last night in Nasvhille! Lots on the horizon as well :) So no. That said, I can't kick a bass drum pedal very hard. But I was never a good drummer ;)


Q:

If you don’t mind, are you religious?

A:

I believe in God, and I believe it's the God of the Bible. I also think faith is a deep and difficult subject, so I don't know the details. But I believe I have first hand experienced some of God's redemption in my own life.


Q:

Hi David, I have a hereditary muscle wasting disease. It's going to place me in a wheelchair and eventually lead to my death through heart failure or breathing collapse.

I've often thought about whether or not I would be "happy" with my life as things deteriorated. How did you find the psychological difficulty of being paralyzed?

I'm not scared of death, I'm scared of being unable to do things....

A:

'm not scared of death, I'm scared of being unable to

Thank you so much for sharing, and I'm sorry about your condition. The phychological part is hard, and I have no idea how to cope with what your struggle will be, I do know that "Man's search for Meaning" by Viktor Frankl has meant a lot to me. It's a book by a guy who survived the holocaust, and you should read it for sure. He says that there is a certain kind of purpose you can only find through suffering. I've latched onto that, and It's been quite rewarding.

Make sense?


Q:

Are you into gaming?

A:

I was until I got more into music.


Q:

One more, probably stupid. Have you always been a forgiving person? Many people take small sleights against them to heart, and take a while to let them go. Have you always been able to rationalise and forgive? Or was that a conscious decision? I guess I'm asking if you're naturally hyper-empathetic, or if you learned it along the way!

A:

Good question: honestly, maybe I've just made the right friends, or maybe it's the way I view people, but I've never been so offended that I couldn't forgive someone. I don't think anyone's done something so bad to me that was truly evil that I couldn't forgive. Closest thing would be the person who stole my laptop from the scene of the accident........ That was low.


Q:

Former Nashvillian - where is your favorite local place to perform?

A:

I JUST played City Winery two days ago! it was incredible, they feed you and make wine with your label on it :)


Q:

Did you take and courses on or practice any sort of mindfulness exercises to come to terms with everything that had happened and everything you felt/feel?

A:

songwriting helps. and writing.


Q:

Have you read about Larry Flynt? What do you think?

A:

No i haven't!


Q:

just want to thank you for sharing your story, im battling depression and seeing posts like these make me wonder why am i actually depressed for. Thanks friend i wish you all the happiness you can acquire.since i have to ask a question, what is something you wish you did before being paralyzed but wasnt able to do?

A:

ou did before being paraly

That's so awesome! yeah, I would love to play a soccer game. Snowboard. Wakeboard. Not have pain in my legs/back. Pee/poop normally again. But I can do lots of things!


Q:

Hey, David. Been a while since I've seen you. Just wanted to say hi. How's your dog?

A:

Just wan

Hi!!! He's great :) My parents have been taking care of him.


Q:

How do you process Anger?

A:

Don't supress it, but don't let it linger. Honestly it's been less frequent recently.