From hacker to hospice in seven weeks
benjamincburns.com
benjamincburns.com
As a personal testimony, about ten months ago user ifktaotc made a very helpful comment regarding testicular cancer and it's prevalance among young men warning that it was likely that at least some of those reading his comment will have it or already do so. https://news.ycombinator.com/item?id=7120102
After reading I checked myself and found what was confirmed a few days later to be a cancerous mass.
I am very fortunate to be alerted to the fact very early as aside from some initial surgery it hasn't affected the rest of my life. Even though the odds of survival overall are high, not knowing it earlier would have required much more intense and painful treatment (chemo, RPLND).
When my testical swelled up I was quite frightened. It is essential that you go to the doctor and get checked - that's obvious, but to calm yourself down you can use a bright torch to check to see if you have any part of it which is not transparent.
A soft pink glow with some blood vessels is reassuring (go to the doc anyway as lumps are not normal and need a bit of a look see). If you observe any dark patches then this is more of a concern and you need to move fast with the knowledge that there is good treatment available and you have caught it earlier than many would.
I find shining a bright light through much easier than squeezing and feeling - but it's worth doing both.
I just feel like this is a perspective that may not be immediately realized among groups of people that don't have their own children. I know before I had children, I would have only viewed it as tragic.
I hope my words didn't portray the opposite.
Being a bit of a paranoid and morbid guy at the best of times, reproducing seemed inherently and intrinsically important to me in some hard to quantify way, and I feel so much mentally better for having descendants. I can't really explain it well though and have chalked it up to one of those messy, animalistic "instinct" things.
Not necessarily weird - you sound just as self-obsessed as the rest of us.
I don't know how about Steven and Nicola, however I myself would mind having certain intimate moments shared with general public (e.g. overheard phone conversations, etc ..)
Having sad that, I feel for Steve's and Nicola family. It's always tough.
I hemmed and hawed about whether to post this article at all for this exact reason. In the end I decided that if I was going to post it I should be both respectful and truthful.
I probably could've worded it better. I probably could've added some disclaimer that this is true as far as I remember, but my memory is fallible.
[Edit, as I hit post too soon]: Either way, I tried to be polite about it. This tragedy struck during a crunch time when a lot of us were feeling the need to rally together in order to make the big win. Any married person who chooses to work late on occasion experiences such a phone call.
To be clear, I didn't hear her end of any conversations. There weren't more than two or three of them that I overheard, and I wouldn't have included anything about them if I thought they were terribly personal.
The struggle between work and home life is something I experience myself. It's just another parallel I can't help but think about when trying to make sense of this situation. Not including it felt like I was leaving something important out of the story.
You have made a tribute to what sounds to be a wonderful person and a great friend. You have also helped to raise money for his family, which I'm sure will help---if not just a little bit---to put him at ease knowing that they have support. And you have brought further attention to cancer.
I hate having my personal affairs public, but in a case like this, I'd be happy to have my story known.
Thank you so much.
Just some quick, well intentioned feedback from someone who has lost almost every important loved one...
Please don't be angry. That may seem like a natural response, but it is wasted output, serving as input into no productive process. Life is not a problem to be solved; it is a gift to be savored, one day at a time.
Have fun doing what you love to do, but don't forget to knock off when it still makes sense today. Then go hug your love one(s). Today will be gone tomorrow and there is no algorithm to bring it back.
If I were to make my own abridged TL;DR, it would be "aging is a human tragedy that we can and should fix"
It is my personal opinion that a person's opinions of social norms, cultures, and traditions are largely fixed throughout one's lifetimes, and it is death (and birth!) that allows a society to shift its morals.
Would you rather have tens of billions living forever in socially stagnant, oppressive conditions, or a few billion living in gradually-improving conditions? Doesn't the quality of the life matter as much as the quantity?
To take the argument to an extreme, I would certainly rather live a hundred years of average contentment than a thousand years of being tortured by a sadist every day.
This is a huge false dilemma.
Doesn't the quality of the life matter as much as the quantity?
Certainly. And the effects of aging are heavily detrimental to quality of life.
Ask the next menial labourer you encounter (the person making your food, ringing up your groceries, or cleaning your hotel room) which of the following they'd prefer: A) A basic income* until they die around age 100 B) Eternal life in the same economic & social conditions they're in now
Do you really think the majority would choose B?
* I'm using basic income as a placeholder for an improved economic & social situation.
For what it's worth, I'm not an angry person. I recognize how useless and distracting anger is. I owe that mostly to my ability to see solutions where other people see problems. However when there are no solutions to be found, and the problem is this large, I can't help but experience this sort of frustration.
That said, the experience of writing this up and witnessing how this story resonates within people has been helpful. When I posted it I had no idea if people would upvote, especially with the obvious/shameless call to action for a donation. Seeing donations come in as a result of this has brought me to tears.
Being faced with such a situation it's impossible not to feel cynical toward the the world. Thanks to everyone here for responding so positively.
And you're so correct that life isn't a problem to be solved. I lose sight of that far too often.
The sooner you get this into your head and heart, the better you will live.
When I look at the power structures of the modern world and the control that corporations have over our governments, I don't extrapolate positive changes should the powerful also start living forever.
Death is part of life. People need to stop pretending it's bad. If you feel it is such a bad thing, will you also cure death for every spider, every frog, every crow, every ant, every tree? What do you think will happen then? Or is life only important when it's a human?
The economy doesn't work that way. You and your children are not poorer because Warren Buffett is rich.
Death is part of life.
So are Alzheimer's, cancer, polio, and people with bad vision being eaten by bears. Which of those should we not address?
I think all of those problems are worth addressing, but I don't think we should be in a mad rush to cure death itself. It is a vital part of returning resources to the cycle of life to be used anew. I think our world would be worse off if humans lived forever, it would be stale and stagnant. Finally, I think we should fix some other problems that our overpopulation and thirst for growth are causing before we try to cement that growth with eternal life.
Things come and go all the time. I try not to cling to them. "This too shall pass" can be a very comforting mantra. Value things while they're around and know they won't always be around.
In my youth, I thought emotions were things to be controlled, suppressed. That was terrible for me. Three years ago a lot of bad things happened more or less at once, and my hyperrationalist suppression of emotion failed me. It was sand castles against a tidal wave.
Now I try to treat emotions like weather. I don't get to pick them; I just get to pick how to respond when they happen. So if somebody is feeling angry, I think that's ok. I'd hate for them to justify it, to sustain it, to make it a habit. There's no sense in nursing a grudge against the world, and I certainly wouldn't want them to let the anger spill over onto those around them. That is definitely a waste. When they feel it, they should feel it. But when it passes, they should let it go.
No - be angry if that's what you are right now. Be sad, or envious, or bitter. Just try and move past them - don't linger and wallow in them.
I don't care about your tacky, techie-ish analogies. Sometimes you have to allow yourself to feel those 'bad' feelings in order to move past them. And it has nothing to do with productivity.
I'm sure a lot of your coworkers and team are contributing, like you said, but it'd be nice to think (if they haven't already) that your actual company would make a reasonable contribution to Nicola and their future child, since it sounds like Steven gave so much to the company (albeit under compensation). I know I would for one of my key and valued employee's, if I were in a position to do so.
I'm 31. About three years ago I started having three/four day long bouts of total delirium, roasting fever, extreme nausea, can't even keep sips of water down when it happens - by day three or four, I'm usually too weak to move, totally dehydrated.
Two years on, my GP is still going "clearly your hygiene is terrible and you're giving yourself food poisoning", and it had got to the point where I'd be lying there, lapsing in and out of consciousness, feeling my heart stop. And start. Then stop. Then I'd turn blue. Then it'd start again. Then I'd turn back to a nice healthy jaundiced yellow.
Took myself to the far side of the planet, got diagnosed with gallstones. Not just good old fashioned gallstones, but gallstones that make an imaging tech go pale and run out of the room to bring in several other people to hemm and haww before looking at me and going "Sir, you're extremely ill.". Turns out my gall bladder ruptured years ago, due to a large collection of stones, and occasionally oozes bile and bowel contents into my innards. It has eroded my vagus nerve (hence the cardiac symptoms), damaged my liver, and I'm having surgery at some point hopefully soon to have the damned thing (gall bladder) outright removed. I can't drink any more, and my other half gives me no end of shit for smoking weed in my spare time, as it's the one thing that makes the f'ing thing stop hurting - or at least makes me not care that it hurts. I've tried various legal pharmaceuticals, but they all either make me more nauseous, or make me incredibly tired - or I can't take them because they're liver metabolised. I digress.
Anyway.
The long and the short is that knowing what's wrong with me has helped, as when I didn't know it was utterly terrifying, and while it's now still terrifying, it's a known terror, rather than my darkest fears made manifest.
I could drop dead with only a few days notice from this, and my next attack might be my last. Every time I've had a major attack, I haven't just felt like I've been dying - I have been dying - and have been fortuitous enough not to. For now.
This led to the realisation that I could drop dead at any point, regardless of this. I mean, we're all ultimately aware of our own mortality, but until you're reminded of it every day, by perhaps an awkward "I have a stick wedged under my ribs and looking at things makes me feel sick" sensation, you never really appreciate it.
Mortality is the ticking timer that keeps you alive.
If the mortality of others can remind us of the importance of living well, then even if just in that way alone, they persist in doing good for we the living even once they're gone.
I thought his approach was weird and off, and must have been something I'd bought about:
Him: "tell me word by word what you want me to put in your notes"
Me: "uh, what? I don't care. I just want you to at least have a crack at figuring out what's wrong with me."
Him: "'Abdominal pain.', then."
until I learned that he says the same to practically everybody he "treats".
I asked for an ultrasound, as I had suspected gallstones about 18 months into the ongoing nightmare - he said, and I quote: "You're not fat. You're not female. You're not forty. You don't have gallstones. You have hypochondria. I'm not wasting the time it'd take to request one."
I get that he sees dozens or more patients per day, and that it's got to be an incredibly trying job, like tech support but worse, but if you can't take the heat... get out of the kitchen, before you inadvertently kill someone, and go be a lecturer or something.
Compassion fatigue is real and it kills. http://en.wikipedia.org/wiki/Compassion_fatigue
Also, if you don't mind me asking, why didn't you get a second opinion sooner?
If they're in the UK I implore you to complain about the lapses of care. Look at it this way, it isn't up to you to parse judgement over if the care you received was fitting or not, but it gives people who are qualified to do so a heads up so they can examine it.
The NHS has a lot of very good GPs. This clown is giving the service a bad name and worse still giving people a sub-standard quality of care. Please complain to the health authority.
That's a bit harsh, isn't it? & Are you sure you'd want him to go and propagate his habits by teaching them to others?
My gallbladder died, went necrotic and nearly killed me in the span of a few short days.
Good on you for finally getting the problem fixed and having an iron constitution, mate. Next time a little less waiting for a second opinion may be in order!
In a fun twist, a month later I contacted a different Dr's office in the same plaza to get a new doctor. I wanted to verify it wasn't the same location, so I specifically asked if he worked there. The attendant said "No, but why do you ask?" I told her the story and she said that he had applied to be a part of their practice and, after my call, ther was an extremely slim chance of that happening. Made my day.
Yeah there are stupid people in all professions but doctors in general are overworked and there's only so much specialized knowledge that generalists can hold in their heads.
Who knows. Maybe this will help? http://www.businessinsider.com/ibms-watson-may-soon-be-the-b...
1) The AMA has nothing to do with limiting the supply of doctors in the US
2) The AAMC (not the AMA) formerly limited the number of medical students per-year in the US, but they stopped this practice sometime around 2004 with the stated goal of increasing the number of medical school graduates.
3) Even if we doubled the number of medical school graduates overnight, we still would not have more practicing physicians in the US, because the bottleneck occurs during residency (after medical school) - there are a very limited number of residency slots.
4) Residency programs in the US are funded by the federal government through Medicare, so increasing the number of practicing physicians would require increasing funding to hospitals that offer residency programs by increasing spending on Medicare. This is both politically complicated and incredibly expensive (training a resident is very cost-intensive when you look at the big picture).
So yes, there is definitely an issue with the number of practicing physicians in the US, but fixing it requires Congressional authorization to increase spending (and not just by a little), so it's unlikely to change anytime soon.
Residents from what I know are not well paid, what makes it a profit cost center for them that they require government funding for it?
The issue is largely that you have an attending physician making a great deal of money (compared to the median US, not necessarily for a doctor) who spends the majority of his or her time teaching, watching, and fixing what the resident does.
You can easily have a hospital/government (not sure what the funding split is) spending $500k/yr for $100k/yr in productivity.
Also there are the other 5 anglo countries, which will have no problems with english. Many of these UK, german, etc grads could also be people from the US originally, so there wont be english competency problems there. Many europeans also have excellent english on average, like germans and scandianvians. It would be miles ahead of the average non-west euro immigrant software engineer that is very common in the USA.
QC and skills wise, I don't have much worries from these top tier countries medical practices. Do you freak out if you have to go to a hospital in Sweden because the doctors may be bad!?
More usefully, what could be done to get hospitals to fund the programs? Some hospital systems have billions of net income, they can clearly afford to fund at least a few residencies.
What incentive, economic or otherwise, exists that would cause them to do that?
I wouldn't be surprised if hospitals were able to benefit from cheaper doctors though.
Now, put yourself in the shoes of a company/NGO that arose to fill in the abandoned niche afterwards. Would you be willing to take in a junior employee and let it do unsupervised work? Would the affordability, cultural fitness or "passion" of said junior employee make a big factor in your decision?
Agreed on that, though there is an upper limit on that, you cannot lose more revenue than you make over the time it takes to resolve the incident.
On the other hand, doctors can be assigned punitive charges (is the term correct?) well beyond the "objective" loss of the patient. That kind of stuff can bankrupt health care practitioners... that's why they have insurance AND legal departments.
Maybe it is just the perception of risk, but I think that explains why there's much more caution around it.
Another data point. Medical schools in US accept only people that has successfully completed an undergraduate degree with transferable skills. In many countries, you can enter medical school after highschool (though the degree takes more years of study than your standard 4 year bachelors).
Q: What do you call someone who finishes bottom of their class in medical school?
A: Doctor.
Went to a second doctor recently after a few months as it started getting worse. "It's just heartburn", even though I told him I already take a PPI, H2 blocker and calcium. I've had heartburn for 12 years and know this was a very different feeling, but he basically ignored me and proceeded to ask me about how often I went to church and about my sex life. I wish I was joking. So he wrote me a prescription for ranitidine (a weaker H2 blocker, sold as Zantac OTC.)
But thankfully the second time I was given a blood test and found that my vitamin D level was <9ng/ml, even though I was already taking vitamin supplements. So he wrote me a prescription for 150,000 IU of D2 weekly. That seemed to make it worse.
So I looked into this and found that D2 has poor bioavailability and depletes magnesium. So I obtained D3 and magnesium supplements, am taking a saner supplement level (10,000 IU daily), and have been feeling quite a bit better. Not perfect, but supposedly it can take three months to fully recover.
I was very surprised to learn that a lot of people develop random musculoskeletal pains in response to very low vitamin D levels. Neither doctor even considered that possibility.
I was very worried that this might have been something more serious, and it was basically impossible to convince either of two doctors to actually do some real tests just to be safe. When I read stories like this, I can't help but wonder, what if it was the start of cancer (which killed my father)? And by the time the symptoms got bad enough to not write me off right away, it'd be too late to treat it?
I've had similarly terrible experiences with fatigue during the day due to my job's oncall responsibilities. That doctor told me it was depression (I am absolutely not depressed), and tried to get me to start taking Zoloft, which I refused.
These GP doctors just don't listen to their patients nor take their concerns seriously. I'm sure everyone always assumes the worst when something bad starts to happen, and likely it does turn out to be nothing. But one in three people do develop cancer in their lifetimes. How the hell are we supposed to get it diagnosed early when doctors just casually dismiss us out of hand?
So, moral of the story: get your Vitamin D levels checked. And take D3, not D2.
I can't even imagine what my levels were prior to taking the 500% RDV supplement I was on before having my blood checked. But at <9ng/ml, I most likely have osteomalacia.
All doctors will only prescribe D2 (ergocalciferol); so you really need to go and get D3 (cholecalciferol). Your body naturally produces D3, and the latter is much more bioavailable. Because of this, you will also want to scale down your dose and not take as much. It's possible to go too far and end up with hypervitaminosis, which ironically can also cause random bone pains, and calcification of your arteries.
It's important to test your 25(OH)-D levels every few months when taking extreme supplements.
Also, be sure you are getting enough calcium and magnesium. These are the chemicals needed to maintain healthy bones. Doctors do not prescribe the magnesium, and large vitamin D supplements will deplete this, also leading to calcification and other problems.
Finally, for anyone living north of South Carolina, you will not receive enough UVB radiation from the sun to produce sufficient levels of vitamin D during the winter months, and milk really has very little vitamin D. So you might want to test and possibly supplement if you are experiencing random musculoskeletal pains. Low levels are fairly common, and usually not a huge deal. But at my level, it was fairly severe.
... erm, well ... maybe chest pains aren't so bad after all :P
>So, moral of the story: get your Vitamin D levels checked. And take D3, not D2.
Especially if you work indoors or otherwise avoid sunlight. (I don't take special pains to avoid the sun. I like the sun, but I do avoid outdoors when it is too hot, which is most of the time in my area.)
This is the most common story you'll hear from a cancer patient.
The most upsetting part is how critical early diagnosis is: the difference between stage II and IIIc can be the difference between 80% vs 20% five-year survival.
Good doctors are few and far between, and good diagnosticians... I dunno, me and my family have been in and out of the medical system for a while now, and I'm yet to meet one.
When you go in, do your own research, get a copy of your results, and tell them exactly what to do.
My mother was on phen fen for weeks even after telling the doctor she had chest pains. Only after she read a newspaper did she find out how horrible it was. The doctor was clueless and careless.
This has been my experience, repeatedly. The GPs I have had aren't motivated to get to the bottom of any problem that can't be solved in one 15 minute visit, and refers anything out to specialists. The specialists have all diagnosed me with whatever issues fit their specialty. No one in the US medical field seems interested in actually finding out the real problems, just what's easy for them to diagnose or fix.
After writing this I realize how cynical it reads, but it's the truth! I'm sure there are good doctors out there -- maybe in a teaching hospital?
If you disagree, read this (about 2/3 of which is relevant to me):
http://www.amazon.com/Endocrinology-Adult-Pediatric-2--Set/d...
There are thousands of diseases and not that many different symptoms. Most serious diseases have numbers of mild conditions that look very similar.
This is not to say there are not major issues with the way medicine is researched and practised. And that being a doctor does tend to encourage people to be arrogant and overconfident. And that the medical basically selects people who are good at memorizing stuff.
Whole life is rarely a good investment choice unless you have considerable assets, but HN has a much higher income than the median so there are likely folks here for which is makes very good financial sense.
But yes, if you have kids both parents absolutely should have term life insurance no matter what. It's very cheap, incredibly cheap if you are not a smoker and have no health issues.
Good luck for your surgery.
I'll never forget the ceiling of the apartment I spent so many nights waking up in pain seeing, or the sun shining on the wall in the mornings as I thought "oh, I'm alive!"
Best of luck to you too friend.
Just to set the background, I'm in my mid-40's, was a responsible adult, and had a house and family, and worked as a programmer for 15 years. I was fairly typical as a programmer -- a bit overfocused, had an excellent memory, strong reading skills, etc... I wouldn't say I was a great programmer, but I was a solid, competent programmer at the senior-ish/lead level.
Initially I was diagnosed with sleep apnea. Once I was on a CPAP machine I had periods where I'd sleep more-or-less normally, but I'd still go for periods or three to six months without normal sleep. This went on for three years or so. During periods of extreme fatigue my immune system would collapse and I'd get sick at the drop of a hat, and normally small things would make me really sick. Well, that was pertty horrible, but not too bad, really. I could get through it and, once the CPAP was set up correctly I'd eventually come back to normal after a few months.
I'm not really sure, but I think that sometime in that period I picked up a disease like chronic fatigue syndrome or mono or something that made it so that fatigue and confusion cause real trouble in my life. My memory is crap, and is simply gone most of the time. I have an extremely hard time getting focused and oriented. It's destroyed me financially, emotionaly, and caused a whole bunch of damage in my life. I'm just barely getting by and living in my van.
Sometime I'm better than others, but I go through these periods of extreme fatigue, where I mentally "fade out". My memory gets extremely bad and I forget things within seconds or minutes. I have trouble recognizing faces, names, etc... as well as just getting myself organized and functioning like an adult. There are periods where I come around and my brain starts working sort-of normally again, but it doesn't seem to last for very long.
I've seen seven or eight different doctors, ending three years ago when I lost my job and ran out of money. I didn't had any luck getting any of them to take my condition seriously. I'd tell them that something other than sleep apnea is going on, but they can't find anything, at least nothing obvious, so they don't believe anything is really happening, that it's "just psychological". But I know my self better -- for example I Know I had a college level reading ability in the sixth grade. Now I have trouble remembering the title of a book I read a week ago.
I'm solidly in the "darkest fears made manifest" stage of this thing. Part of me knows I'll survive this, that this will pass and that everyone deals with sickness, old age, and death. It has been (very) slowly getting better. I still have bad periods, but they aren't quite as often or as long, or as bad, as they were several years ago. Even still, when I'm in the middle of one of these periods of fatigue and confusion I'm convinced that it'll kill me.
So, and here's the real point of this, I'm still committed to being a force for good in the world. I'm there for my kids, regularly volunteer, and stay involved with helping other people. Like you say, mortality is the ticking timer that keeps you alive.
For me I believe it was brought on originally by a case of mono in my teens (although it didn't really impact my life significantly until my 30s). Those kinds of illnesses - or even some injuries - can wreak havoc on your nervous system, causing it to not be able to regulate your body's functions properly, including not getting sufficient blood to the brain, depriving it of oxygen. I also strongly suspect I have an underlying genetic disorder that made me more susceptible to this problem, which I'm going to finally be evaluated for next week.
Edit: I should also add the other thing that stood out to me in your post is that I was also told that my problems were psychological and just caused by "anxiety" - it's a common misdiagnosis with these kinds of issues by doctors who aren't familiar enough with them and the effects. In my case it turned out later that my panic attacks were a result of my body not being able to moderate my heart rate properly. Pretty much everyone I know with autonomic issues went through the "it's all in your head" phase of diagnosis before getting real answers.
In my case it's had a huge effect on me as a professional and programmer, leading me to lose and jump jobs as I attempted to find somewhere that was willing and able to work with my needs, until earlier this year when I finally quit my last job and started freelancing. It's still a challenge for me but a huge step towards finding the kind of work I'm still able to do.
Good luck, and good for you in still fighting to be a positive force in the world and for your family.
About ten minutes into the exam he told me that it was either depression, or sleep apnea, and that I was just looking for a way to get out of working.
I'll admit that the Part of it was my fault -- I was beyond exhaustion and not exactly on my best behavior. But I also had seen maybe eight different doctors before then, and, other than sleep apnea, had been misdiagnosed and mistreated for several things already. My GP didn't seem to believe that there was a real problem, and I was just falling apart physically, financially, and emotionally.
That's about where I gave up hope of getting useful medical help, and decided that I was just going to tough this thing out, and if it kills me then that's just how it goes sometimes... Not a smart choice, but that's where I was at the time.
Any way, that was then, this is now. Writing these posts has gotten me to think about how long this has been going on, and, now that I'm more clear-headed, it's time to start seeing doctors again and see if I can get this fixed.
Same memory issues, mental health issues, physical health getting worse year after year throughout my whole 20's. I found out just a few months back I actually had Lyme disease for almost a decade, that had gone undiagnosed and untreated.
http://www.ilads.org/lyme/lyme-quickfacts.php
50% of patients with Lyme don't recall a tick bite.
There are over 100 strains of borrelia in the US that can potentially infect humans, and over 300 worldwide.
A Western blot test by a reputable laboratory is the most reliable test out there, like this one:
If you do have Lyme disease, there are natural, lasting ways to heal:
http://www.amazon.com/Healing-Lyme-Prevention-Borreliosis-Co...
What I learned: See a doctor ASAP and do not delay treatment, even when working on one of the best projects.
After 25+ of these episodes (which would last typically 2 weeks, building towards the end), 7+ doctors, so many scans and tests I can't describe, long periods of missed work and play, and abuse of drugs that helped (thankfully none really did much, even weed in copious amounts barely helped so I never used it much). I'd get so sick from eating I was prescribed Xanax for the massive panic attacks I'd get just looking or thinking of food, because my fear of pain was so strong.
I had my gallbladder removed by the 5th doctor. I thought it worked. I stuck to a very clean low-acid diet after that, avoided tough food (I had developed a hiatal hernia from the vomiting), and took PPI's religiously and was fine for 8 months. I thought I was cured. I stopped the PPI's and within a month I was back at the ER. Pretty devastating. Now, I can control it. I cycle on PPI's, avoid all smoking and alcohol, as well as eating hot/spicy/acidic food too often. I've been 4 months now without an attack on this regimin and I feel pretty confident.
The worst part they never mention with undiagnosed illnesses of things are the mental side-effects. I was pretty much ostracized by large groups of people who certainly believed I was either looking for attention or avoiding admitting I had an eating disorder. I even had a doctor at the ER once tell my mom that's what she thought. My parent's even began to doubt I was actually ill. Finally, after months, I even doubted myself. The pain was real, but perhaps I was inflicting it on myself somehow? (crazy for me to think back on my mental state at this point). I felt too weird to even hang out with old friends, it's not masculine to not be able to eat. Paranoias and fears grew with each sickness and month of uncertainty. By the ended I was certainly clinically depressed. I felt my entire persona had melted away, I was empty. I didn't even know how to talk to my mom on the phone, I knew she would immediately recognize something wrong with me. I lost confidence, happiness.
Luckily that all returns if you can maintain health. Just four months ago I had reached my low; malnourished, weak, paranoid, afraid, tired, forgetful, slow. So scared of more pain, because at this point I felt I was running low on "reasons to live".
But, within a month of eating well my energy and happiness were back, with two more months I found myself feeling like "me" again, something I hadn't felt since those last 8 months of health, and before that since years before. And the difference was just small changes to diet, and avoiding many social situations that make that pretty much unavoidable.
I don't know what the moral of the story is. I feel like I did everything I could and struck out, and it's pure luck that I'm still here today. But I guess I'm thankful. I still am dubious on whether life is "worth it", and I couldn't imagine bringing kids into a world where the sort of suffering I went through is even remotely possible. But perhaps it did help me grow up and gain perspective on what matters.
Keep searching for solutions, keep experimenting, don't be afraid to ask for help and tell doctors to fuck off.
I have to ask why you're not having emergency surgery if this is such a serious issue?
I went into an ER (American) in 2009 because of severe stomach pains. Within 12 hours I was on the table, and the surgeon said I had the worst gall bladder he's ever seen that wasn't removed in pieces (I was 23 at the time).
I was fortunate in college to discover fairly serious cancer very early (total accident), and am very appreciative of the support I received at the time. Likewise, someone very close to me who had been behaving oddly for a while was diagnosed with a serious nutritional deficiency that explained everything.
Bodies and minds are terribly imperfect, and if someone you know is suddenly behaving oddly, at best it's a serious personal problem, at worst it's a physical problem even they may not recognize. Be a friend to them!
For some people this may be true. Here is an important alternate view - that we rationalize death as being valuable because we can;t fix it yet.
http://www.nickbostrom.com/fable/dragon.html
More on what you can do here
The gut contains millions of microscopic structures known as microvilli and they facilitate the absorption of nutrients into our bodies. As the gut lining becomes more and more damaged by plant lectins like gliadin our bodies begin to suffer from starvation even as we intake higher numbers of raw calories. We also become susceptible to autoimmune diseases because lectins escape through the damaged gut lining into the body causing the body to mount a full scale autoimmune response. This happens as a result of our bodies producing antibodies to our own protein structures like the pancreal lining, the myelin sheaths in the brain, and other important components of the human body because lectins highly resemble these proteins.
Additionally I have since learned that a good portion of people who required surgical gallbladder removal have undiagnosed celiac disease or non-celiac gluten intolerance.
The only way to test for this if you do not have the antibodies they test for to make a diagnosis is to get a biopsy of your gut villi. They can use a camera capsule to inspect the state of your villi and make a recommendation.
Upon removing all grains from my diet and obsessively avoiding products that contain grains of any kind such as soy sauce for the past 10 months I have dropped 95 pounds and am on tract to return to my post graduation weight of 190.
This is not medical advice please seek the assistance of a physician before undergoing any significant dietary changes in your life.
Problems like these are untreatable if left for too long, but if caught early, there's sometimes hope. The solution seems to be to develop as many types of passive scanners as possible.
The problem is false positives. But wasting a month needlessly visiting the doctor doesn't seem that bad.
And false positives are not a rare event. False positives are very common.
On top of that the radiation (from CT scans) increase the risk of cancer.
Scans for healthy people are strongly discouraged.
There's a possible benefit if you have any of the genetic markers for lung cancer or are otherwise at risk of lung cancer - heavy lifelong smoker for example.
CT showed that it was pretty bad, que months of stressing and worrying about what was going to happen.
Turns out it was a false positive, caused by an accessory spleen looking like a tumour. False positives do happen, and they can be pretty devastating - it took quite a while for her to get back to normal.
Stressing and worrying are both several orders of magnitude better than suffering and dying.
Source: My case wasn't a false positive.
So now you have someone who thinks they have might lung cancer, when in fact they probably have almost harmless scars from chicken pox.
But what do you do if you think you have lung cancer? Do you go and get biopsies? The stress from that result is significant and shouldn't be dismissed as something trivial.
My point is people who went through the experience of having test results compatible with cancer and then discover it is just a false positive (which technically it's not even true, there's no cancer diagnosis before a biopsy, it just can't be excluded), well, these very people seem to speak out against screening, or adopting more extensive screening policies, because they had a "false positive", and "it's stressful".
I am pretty sure all the people whose lives were saved by screening find that pretty selfish.
The harm/good ratio of screening depends crucially of the false positive/negative ratio vs. the actual prevalence of the condition or disease being screened for. (Plus, obviously the psychological/medical "cost" of a false negative/positive.) I would recommend the talk at [1]. This particular issue is brought up about midway through the video, but I recommend watching the whole thing.
[1] http://www.ted.com/talks/peter_donnelly_shows_how_stats_fool...
Harms of Screening Mammography: http://www.cancer.gov/cancertopics/pdq/screening/breast/heal...
Sure, but if you're scanning daily (or close to it), then you don't need to do anything immediately for a positive. You see a growth that looks like it might be cancer—then have the doctor watch it. If you're scanning often, then you'll see any changes. Does it grow? Then it's something to be concerned about. Does it stay the same? Then you don't need to worry.
With frequent enough scans, finding something isn't a cause for any alarm. You can watch how it changes, and decide if it's a concern based on that. Like skin moles. Yes, they could be a problem, but if you have one, you don't need to worry unless it starts changing. Just having one doesn't cause anxiety.
I agree, and I'm not recommending we do that right now. But imagine if we had cheap, fast ways to do the scans. So much money is being pumped into cancer treatment right now, I'm just wondering if better cancer detection might be more beneficial. Our current treatment methods might get us a lot farther because we'd use them when the tumors are smaller, and we'd have a much better sense of how aggressive a tumor is.
http://www.cancer.org/cancer/cancercauses/radiationexposurea...
There's also the issue that, at present, MRI scans are considerably more expensive than CT.
Google for Esaote (my coworker got scanned a couple times by their product) and "extremity MRI"
As you'd imagine the economics are non-trivial. The machine is smaller and cheaper that a full size MRI (google claims its fraction of a million, like the cost of a house) but obviously something that can only scan knees and ankles and elbows is a pretty tough sell unless you're a sports medicine practice in which case its a pretty easy sell...
On the other hand if a "whole body sized" MRI costs $2500 per scan, then you've only got to scan maybe 100 knees to pay the capital cost of a dedicated extremity MRI. And how long would that take at a busy sports medicine practice, like a week?
I would not describe the machine as portable. Being a giant magnet you probably need a special safe room to operate it, so I don't envision paramedic/EMT ever having a MRI in the ambulance or whatever.
WRT discussion in the comments about claustrophobia I don't mind the small spaces so much as being chained down for an hour or so, that drives me nuts. My MiL went thru some tests for her gallbladder that took hours, I'd be clawing at the walls after ten minutes. Also if I could get nitrous for my wisdom teeth I see no obvious reason a MRI patient couldn't be gassed but they "never" seem to do that, which I find weird. For $2500 for a full body scan you could at least give me a couple shots of vodka.
This means, for example, not necessarily performing a biopsy just because something is there (but it's probably benign). The cost of invasive procedures such as biopsies, and risk-increasing tests such as CT scans has to be balanced against their benefits.
Of course, there is no risk with a full-body MRI scan. The machine itself is expensive, but otherwise it nominally only costs electricity, maintenance and operation. If full-body scans were, as you say, routine, the cost of the machine would be amortised and an economy of scale should prevail.
The problem is legal; if a doctor sees something on a scan and doesn't take action, they can be sued. This is the case even if there is negative expected utility from performing the test due to the low probability of an actual malignant condition. Due to this, it is not uncommon to hear doctors say that full-body scans do more harm than good.
Until the legal system starts to account for rational choices based on statistical information, this problem is going to persist.
Not quite true. While the scan itself isn't harmful, the strong magnetic fields, RF fields and noise have caused several accidents, some fatal. Compare for example http://www.auntminnie.com/index.aspx?sec=sup_n&sub=mri&pag=d... "The FDA's Manufacturer and User Facility Device Experience (MAUDE) database documented a total of 40 incidents for MRI in 2004. In 2009, the total more than quadrupled, to 193 reported adverse events."
Example of a fatality: http://abcnews.go.com/US/story?id=92745
> False positives aren't inherently a problem. If you have accurate understanding of the sensitivity and specificity of a test, then you can take action to maximise the utility of the expected outcome.
False positives can still cause huge psychological strain on the involved person(s).
That's not really true. The cost of the machine is amortised by having it be in use at all times. In my experience MRI's are already fully utilized. I've had 3 in the past year. Even during Diwali there was always someone immediately before and immediately after me, and I never have much choice about appointment times.
Google indicates you can pay up to $3M for a MRI machine and $100K/yr energy and required maint costs. Google indicates a median radiologist gets $300K/yr and to make the figures ridiculous I'll dedicate one radiologist full time to the MRI. Google indicates mean lifetime of a MRI machine is a decade. Google indicates a hospital remodel to make a MRI safe room and electrical and cooling and ventilation might exceed the cost of the machine maybe $4M. Google indicates budgeting 3 hours per patient is not totally unreasonable. There is maint downtime and testing and the radiologist probably wants to sleep occasionally, even if there are actual specific scans that only take 15 minutes.
So the total cost over the decade lifetime of a MRI machine
3e6 + 4e6 + 300e3 * 10 + 100e3 * 10
You don't need a calculator to add that up to a cool eleven million bucks for ten years of MRIs. However you divide that out and thats only three grand per day over that decade. Or if you assume a long term average of 3 hours per scan (a bit on the high side) thats $375 total cost per scan.
Google reports the average billing is somewhat under two grand, but my math shows about four hundred bucks. Even assuming only 50% utilization they can still only account for $800 per scan.
I'm thinking that despite the mantra / astroturf that MRI is really expensive to provide, its actually a huge profit center for a hospital. Not as bad as the proverbial $35 aspirin pill, but pretty profitable none the less.
Another way to run the numbers is if the fixed cost of having the machine and radiologist available is about $3K/day, and they get about $2K/scan in revenue, you may have been part of a long MRI train that day, but the average machine actually only scans 3 people every 2 days on long term average.
Sounds like a market that's either ready for disruption, or so well protected by regulation that it can't be disrupted.
A little bit of trying to find numbers suggests that 1 MRI machine might be feeding 20 doctors (if you've arranged for 56 scans a week to be the low end number and take into account specialization, this starts to make sense). I guess they are each spending a couple hours during many of their weeks.
You have labor at ~30% of cost, it looks like it should be more than 50%, and could easily be even more.
That's because I chose the highest possible machine price and highest possible room construction price I could find on google. Its quite possible an individual installation could get away with a merely average $2M machine and basically nil building remodeling costs, in which case the labor cost percentage would naturally dramatically increase.
I don't trust the google data I found of $100K yearly for energy and service contract. That sounds low. 10% of purchase price sounds believable for high tech devices.
I googled some MRI tech salary data and one tech for a decade is going to be $1M. So merely not installing marble and solid gold fixtures in the room would easily pay for a team of three full time techs and one radiologist doing absolutely nothing but supporting one machine. Which is pretty ridiculous, but I want to estimate high to make my overall conclusion strong.
None the less my overall conclusion stands that it would be a significant challenge to spend, both labor and capex, more than about a third of MRI sales price to provide the service. Looks like quite a nice profit center.
The legal system does account for this. To succeed in a malpractice action, a plaintiff must prove a defendant failed to meet the required standard of care, which means the defendant failed to exercise that degree of skill and learning ordinarily exercised under the same or similar circumstances by members of the defendant's profession.
If these "rational choices based on statistical information" you refer to are within the accepted standard of care, a doctor is not going to be successfully sued for doing so.
In many cases, the optimal action is not to test in the first place. "Overdiagnosed" is an interesting book on the subject by Dr. H. Gilbert Welch. A recent piece by him in the NYT gives an idea of his thesis: http://www.nytimes.com/2014/11/06/opinion/an-epidemic-of-thy...
[0] http://www.kurzweilai.net/new-lab-on-a-chip-could-revolution...
It's preventative health care, not "sick care".
“Yes, we did it, we killed the dragon today. But damn, why did we start so late?
http://www.nickbostrom.com/fable/dragon.html
If you are in a position to fund things, consider the SENS Research Foundation, instead of the next Yo app.
I'm not sure what to make of this. I learned of it a few days ago.
If your significant other says you are spending too much time at work, that means you should make the choice over what is more important. You always have a choice.
If there is one thing we can take from this it is: you don't know how long you have got in this life. Family is always more important than work, I think we should all remind ourselves every once in a while we have a husband or wife at home, possibly kids, who love seeing us and need your time just as much as your employer does. Jobs come and go, family is for life.
Um, you're not the first person to contemplate your own mortality. The usual term for it is memento mori, and has been a major component of culture and art for thousands of years: http://en.wikipedia.org/wiki/Memento_mori
Very sorry to hear about your friend. Brain cancer is a terrible, tragic condition that can steal your loved ones when you least expect it.
1. Obviously take care about your health.
2. Send as much money as you comfortable can to somewhere, where you think it might make the biggest difference.
3. Support indirectly companies which focuses on these problems. As consumer you can give them feedback on their apps. You can promote them amongst the friends(although make sure you aren't promoting some pseudoscience nonsense). You can choose to buy products from companies which helps the good cause.
4. Work on problem your self directly in work or in free time, by working on open source project, helping some organization.
5. Inform others about science. Many people don't trust the science, doesn't understand basic of scientific research, which can obviously hurt the research (by less funding, cancellation of research), helps ineffective pseudo-scientific treatment.
6. Give info to others about different treatments, and scientific breakthroughs. Many people have information about last treatments only through news, who can care more about great headline than boring truth.
7. Use your pc/mobiles by joining programs like Folding@home.
Any other tips?
So there's absolutely nothing to learn here aside from "visit the doctor often"?
What on earth makes you say that? Is there a documented link between working long hours and getting cancer? Citation please.
"Evidence from experimental studies does suggest that psychological stress can affect a tumor’s ability to grow and spread. For example, some studies have shown that when mice bearing human tumors were kept confined or isolated from other mice—conditions that increase stress—their tumors were more likely to grow and spread (metastasize). "
"Although stress can cause a number of physical health problems, the evidence that it can cause cancer is weak."
But they do make some statements that seem to support the idea as well.
Also, given that stress significant suppresses the immune system, and that the immune system is important for protecting against cancer growth, I think it is highly unlikely that stress wouldn't affect cancer.
It's like if a meteor falls on someone walking through town. Is there really a 'lesson' you can take from that? Sure, you could dig into the person's life and try to find some underlying meaning, or something important this person should have said or done before said meteor came shooting through the sky. But in the general scheme of things, we are tiny ants crawling over the dry parts of an ant-hill floating on a small blue puddle somewhere in the backwater bayou of the universe. Our lives amount to the goings-on of ants, and we can be squashed at any moment by unseen cosmic feet.
The truth of this - that life, and mortality, and our existence, is a fleeting and inconsequential part of everything in the universe - really puts into perspective getting pissed off at immigration reform, or the barista that didn't make your coffee right, or not making enough money, or not getting to see that one movie before it left theaters. We're so unimaginably lucky to be wandering around this ant-hill, and meeting other ants, and getting to start a tiny little ant family. When it ends, it ends.
You should also probably get regular checkups with your doctor, and exercise regularly, don't smoke or drink to excess, and try to get 8 hours of sleep each night. That won't stop the meteors from crashing down on you, but it might help you walk around the ant-hill a little bit longer.
I would like to encourage readers here to consider this. Your life here is temporary. Even if you are very healthy your whole life, one day you will take your last breath, and it will be over.
It is easy to get wrapped up in everyday life. Pursuing your goals and dreams, or perhaps just barely getting by, living day to day. I think most people tend to push off thinking about their own mortality.
And as it is, most of us have no idea how much longer we have. We could be here 50 or 60 more years, or we could die tomorrow in some sort of accident.
So the question I would like to pose is this:
Are you prepared for your own death?
Do you have any idea what will happen to you when you die? It is going to happen. Isn't it worth considering what the possibilities are, and spending at least some time exploring the question?
I believe I have shared this before here (at least to some extent). I am a Christian, and I believe the Bible is direct revelation from God. I believe there is life after death, and that the only hope for a peaceful existence after death is found by believing in Jesus Christ in this life. I would like to encourage anyone here to read for themselves about Jesus' life on Earth, and make their own decision as to whether they should believe in Him. I think the best place for you to start reading about Him is in the Bible, in the gospel of John ( https://www.biblegateway.com/passage/?version=NKJV&search=Jo... ). That book will give you enough information, IMHO, to make an informed decision about Him.
And if one is to become Christian then which one (Catholic, Lutheran, etc etc)?
I've read some Christian apologestics (Augustine, Aquinas, Pascal, GK Chesteron, CS Lewis et al) and they spin a good yarn but obviously you can not reason your way into/out of religion.
So why should one believe Jesus was the Real Thing and Brian was not ?
One way I can see religion working if there is a way to reconcile most of world's religions (that is they are all working to the same end just from different directions). This is what a Lutheran pastor was proposing to me that all Abrahamic religions were working towards the same goal, but that leaves the problem of Jesus.
Second way would be the second coming. This would be even more effective. Why settle for some miracles 1970 years ago, when you could do real miracle stuff every once in a while to remind people that God is indeed something they should consider. Otherwise we get some questionable miracles like the gold plates from Mormons etc.
Until I can figure this out I am doomed to remain in "conscious meat" category.
"So why should one believe Jesus was the Real Thing and Brian was not ?"
Those are fair questions. I would suggest that you read the book I recommended. It might answer those questions for you.
Second way would be the second coming. This would be even more effective. Why settle for some miracles 1970 years ago, when you could do real miracle stuff every once in a while to remind people that God is indeed something they should consider. Otherwise we get some questionable miracles like the gold plates from Mormons etc.
So if you believed that Christianity is the only religion you would be a Christian and if you believed it's the Egyptian mythology then you would believe in Seth and Osiris?
This doesn't really look like you feel any genuine need to believe in any religion; it looks like you expect "others" to provide you with verified, certified-correct worldview.
That's unfortunately a typical symptom of overdose on media and schooling.
You may read religious texts and if something sounds "right" stick to it. You may act on the world, observe it and discover its rules. You may strive to recognize others' influence on you and filter it critically. In any case, you have to work.
Only lemmings get free lunch.
Harlan Ellison has a rant, written when he was my current age, about how many of his friends were dying and that it sucked. (I wish I could find what he wrote but my books are all boxed up at the moment). He had eloquent and angry and, well, Harlan-esque words for the experience.
I remember my friends when I can, and write about them from time to time so that others can share my memories of how cool and great and human they were. That's the best I can do.
People die. People get sick. Everyone you, and I, know is probably going to suffer and perish.
The poor soul in the blog post sounds like he got struck down in his prime; but rest assured, your time is coming in a matter of decades.
Accept death/disease or do something about it; but don't be shocked when it happens! Statistically, it's going to happen in increasing rates as you, your family, your friends, and everyone you know gets older.
Being blindsided by death is odd. A cognitive bias?: 'It won't happen to me'. But, quite frankly, it most probably will!
However, I wouldn't personally choose such obliviousness. I'd rather know, and perhaps plan for it, and do my best to mitigate it as far as I can.
Edit: In particular, the forum! http://www.longecity.org/forum/
I think it's a bit haughty to tell people they should either accept death or do something about it. You'd be a fool to think that the topic of mortality isn't on every person's mind at least monthly, especially with the media constantly reminding us of it. The issue is that it's hard to accept something so distant, especially if it doesn't fit into our current model of our future. It's only until we experience the death of those close to us that we realize it. It's only natural to be shocked, especially when these deaths are unexpected and don't afford the opportunity for reconciliation with the dying. Of course as we get older and more experienced with death we become better equipped to deal with it, but that doesn't make it any less of an uncomfortable topic.
Telling people to accept a certain view of death at a certain time is limiting. It denies the uniqueness of individuals' personal philosophies and their developmental trajectories.
The unfortunate chap lauded in the OP has been afflicted with a cancer of the cerebellum, not specifically a disease of aging. Cancer research has an immense amount of funding, certainly in comparison to many other widely prevalent diseases.
Certainly, dementia research receives considerably less funding then cancer research, so I agree with you that these prominent diseases of ageing are underfunded in terms of figuring out a cure.
Not probably, definitely. It's a fact of life.
The question is not, 'will I die?' but 'will I live?'
My preference would be to work in a place where people can talk openly about their conditions, if they so choose. It seems like in the litigious country where I live, this isn't possible.
Has anyone had similar experiences?
From my limited legal knowledge, it seems like this is the argument for why they try to avoid outside of work knowledge being viewed by those in a hiring/firing/promotion position over you. It is kind of a joke, because if you are out for 8 weeks for chemo, clearly something is up... but somehow just knowing something is up is different from knowing you have cancer?
I think you are either mixed up in the details, or have an overly aggressive HR rep.
Agree though... one company, one comment, one HR dept; your milage will vary.
They will need way more money than this. If uncomfortable giving to an individual, you shouldn't feel this way because this is about giving money to a family in need. This money needs to cover a lot of personal expenses and a soon to be born child.
Don't you want to have spent your time doing something meaningful to you?
That said, Givealittle is located in New Zealand, and they're charging New Zealand Dollars. It's likely your bank is blocking the foreign transaction, or that they don't offer foreign currency conversion services.
If you're keen to donate I'd send a note to Givealittle's customer service. I'm sure they'll get you sorted.
Thanks once again.
However, google has a cached version if you still need it:
http://webcache.googleusercontent.com/search?q=cache:8-vKw53...
In the end, it's not the years in your life that count. It's the life in your years.
Abraham Lincoln
I don't have math or numbers on this- does anyone?- but I can tell from personal experience that just about every time some software engineer my age becomes mortally ill, it's brain cancer. There is something unstudied about what we do that causes problems.
Personally, I had my biggest scare a couple years ago while I was working on a deeply nested, recursive algorithm. Trying to keep the whole thing in my head caused me to stay awake at night. Eventually, I had a fainting spell at a sushi bar, an ambulance was called, and ultimately the doctor thought I'd had a a massive heart attack.
This didn't turn out to be true, thank God, and they never found the biological cause. But I swear to this day that it was the algorithm gnawing on my brain. I don't know that I've been the same engineer since.
There's a terrible risk in our business and no one is researching it. I almost feel like we software engineers are like 3 pack a day smokers before enough science and research was done to prove to the public that smoking causes cancer.
Software engineering can cause brain cancer.
I don't believe software engineering causes brain cancer, but it can hurt you mentally if you work too hard.