A rant right in my wheelhouse

What caused my cancer?

Sure, I’ve wondered that.  I’ve even speculated in writing.  But I’ve asked my doctors on multiple occasions and the answer is universally, “nothing.”  It was a spontaneous mutation, and that’s that.  Sure, there are certain things you do in life that can affect your risk of cancer, but I’m pretty healthy and 25.  I’m not gonna waste my time searching for culprits.

But I came across this blog post the other day by a fellow writing under the pseudonym “Orac.”  Orac is a blogging “surgeon/scientist” (his real name is out there in the ether, so you’re free to ascribe whatever credibility you wish to his piece) who was responding to this piece on Salon.com from McKay Jenkins, a professor of English and Journalism at the University of Delaware.  I highly recommend you read both pieces.

Long story short, Jenkins had a brush with cancer a few years back and it apparently inspired him to discover the “truth” behind cancer.  This investigation culminated in a book entitled What’s Gotten Into Us: Staying Healthy in a Toxic World.  And the excerpt printed Tuesday on Salon.com – entitled Did everyday chemicals cause my tumor? – irritated me.  For a number of reasons.  The story begins:

On a crisp fall afternoon a couple of years ago, I went in for a routine two-year checkup with my internist. Everything seemed to be fine: My home life was happy and nurturing. I had never smoked. I ate right, got plenty of rest, and had been a dedicated runner and cyclist my entire adult life. Save for the usual aches and pains, nothing had ever been wrong with my body, and as long as I was smart about it, I figured, I’d still be riding my Fausto Coppi racing bike well into my '80s.

My only complaint, I told my doctor, was a faint tightness in my hip that I had felt off and on for two years — and odd, sharp twinges between my left thigh, knee and shin that occasionally accompanied it. My internist looked me over and agreed that my pains were probably related to exercise, and he suggested I see an orthopedist at a nearby sports medicine clinic. The orthopedist, in turn, suggested I get an MRI to help him see a bit more clearly what was going on with my soft tissue.

I was standing in my living room when the phone rang just a few hours later. When I picked up the phone and heard the orthopedist’s voice, I knew even before he spoke that something was amiss. "Hello, Mr. Jenkins," he said, then paused. "You have a suspicious mass in your abdomen," he said. "It's growing inside your left hip. Here is the number for an oncologist. You need to call him right away."

I’m going to sound like a jerk here, but whatever.  That started around age 5.  Anyway, I’ve heard this “doctor calls says you probably have cancer and hangs up” bit a million times.  There’s one commercial in particular in which I remember a woman saying, “The doctor walked in the room and said “Karen, you have cancer” and walked out.”  Look, maybe that stuff happens.  But I have seen roughly 25 to 30 doctors throughout my ordeal, and not a single one has ever left the room until they had answered every question I had, and not once have I ever felt a doctor was hurrying me along so he could get somewhere else.  Maybe I’m nitpicking, but I just get the feeling that some of these stories are hammed up for dramatic effect, and I don’t think that’s right.  And I think it’s sort of unfair to doctors – they often get painted as cold, heartless patient-pushers.  That has not been my experience.  At all.  Anyway, maybe that was the experience exactly as it happened.  I could be wrong, and if you want to say, “who are you to question somebody else’s cancer story?” I won’t object.  But it certainly sets the stage nicely for where Jenkins goes next:

This was really happening. But how? This was not a grinding descent into illness; it was a bolt from the blue. I did not feel sick, and never had. My mind raced. How could I possibly have cancer? A few weeks later, I was being prepared for surgery at the hospital when two researchers approached me with questions. The first ones were pretty standard: What ethnic group best describes you? Um, white. How far did you make it in school? I have a Ph.D., I said. How many packs of cigarettes have you smoked per day, on average? None, I said. Ever. Then the questions changed, from ones I had been asked by doctors dozens of times before to ones I had never been asked in my life.

How much exposure had I had to toxic chemicals and other contaminants? In my life? I asked. This seemed like an odd question. What kind of chemicals do you mean? The researcher began reading from a list, which turned out to be long. Some things I had heard of, many others I had not. Metal filings? Asbestos dust? Cutting oils? I didn’t think so. What’s a cutting oil? How about gasoline exhaust? Asphalt? Foam insulation? Natural gas fumes?

Where was this going?

Uh…where the hell is your story going.  And who on earth are these researchers?  The Men in Black?  And what kind of hospital lets researchers interrogate their pre-op patients with lifestyle questions?  As Orac points out, “I have to be honest here: the design of this research project baffles me.” 

Anyway, we’re getting there.  But not without this bit of good news:

A couple of hours later, a doctor led me into the operating room, and I lay down on the table. A moment later, it seemed, I awoke. My eyes felt fuzzy, and blurred by bright overhead lights. Where was I? I blinked. There, at the foot of my bed, stood Katherine and my surgeon. Both were beaming. Something must have gone well, I thought. You're a lucky man, the doctor said. The tumor was as big as an orange, but it turned out to be growing out of a nerve cell rather than a muscle cell. We sent a slice of it down to the lab; it turned out to be benign. Of a hundred cases like this, about four turn out this way. Not only that, we managed to peel the tumor off your femoral nerve. Once you recover, you can get back to running and riding your bike. You’re a very lucky man.

Ok this also bugs me.  Because I think it’s backwards.  Orac calls it “not true,” but either way:  most masses are benign.  The doctors who originally examined my lump certainly mentioned the c-word, but they also told me that they thought the mass was benign.  Like most such masses.  There’s a whole other issue about why on earth that thing wasn’t biopsied first (and why researchers were asking somebody questions when his diagnosis was unclear), but Orac deals with that better than I can.  Again, maybe I’m nitpicking again.  But don’t say things like this because now people who read this and then discover a soft mass some day think the chance that they have cancer is 95%, and it’s not.  So don’t say that it is. 

Anyway, now we’re getting to the meat of the piece.  And here’s how Jenkins sets it up:

What is going on here?

No one goes through a cancer scare without experiencing a kind of awakening. Here’s what mine looked like: I went from being a passive observer of other people’s suffering to feeling an intimate desire to prevent that suffering. I wanted to know if there were root causes. I wanted to try to see things just as they are, how they came to be that way, and what I could do to protect myself and my children.

And here’s how the next several paragraphs begin:

It's worth thinking about what a relatively short time we’ve been swimming in synthetic chemicals…

In his book "The Omnivore’s Dilemma," Michael Pollan outlines the way our industrial food chain floats on an ocean of cheap oil…

The trouble with such rapid proliferation of products made from petrochemicals, of course, has been that the production and use of synthetic chemicals has vastly outpaced our ability to monitor their effects on our health and the environment…

The human immune system has evolved over millennia to combat naturally occurring bacterial and viral agents. It has had only a few decades to adjust to most man-made contaminants, many of which are chemically similar to substances produced naturally by our own bodies…

What becomes clear, if you stop to think about it, is that what’s gotten into us is not just chemicals but culture. We aren’t just saturated with chemicals, after all; we are saturated with products, and marketing, and advertising, and political lobbying…

Our ignorance is not an accident. We are not meant to know what goes into the products we use every day. The manufacturers of most American-made products tend to keep the ingredients and formulations of their products secret, and rarely mention that individual ingredients might (or do) cause cancer, or impede fetal development, or lead to hormone imbalances…

Almost 50 years after Rachel Carson's "Silent Spring," and the tide of synthetic chemicals is only rising…

You get the picture. 

I’ll be blunt:  This isn’t science.  This is a rant.  I haven’t read the book.  I’m not going to read the book.  So I speak with those caveats.  But this isn’t a calm analysis of what science has to say about what causes cancer.  This is a rant worthy of a blog, but not mine, because it’s not that good and the targets aren’t even interesting.  I defend medical marijuana patients and attack Mitch Albom.  Jenkins rails against Big Oil and lobbyists and gives a shout out to Rachel Carson.  Gee, couldn’t tell you work on a college campus.

I mean seriously, in just this excerpt, we get a Nazi reference, shots at Big Oil and Big Coal, the line “Every choice we make is a bargain with the devil,” and this gem:

You want to wash your infant’s hair. What could be more benign than baby shampoo? But look closer at the label on the bottle: the baby shampoo contains formaldehyde, which causes cancer and compromises the immune system.

Hey Mr. Jenkins:  Every parent who has ever taken their kid to chemo treatment thanks you for telling them that they gave their child cancer, you jackass. 

***

Anyway, I don’t want to ramble, so let me be clear (I paid my taxes, so I can use that phrase now):  I’m open to and even lean toward the conclusion that there are chemicals in our environment that can increase the risk of cancer.  But this is straight-up fear mongering bullshit.  And if you’re not going to write honestly about cancer, don’t write about it at all.  It’s not a game.  It’s not a joke.  It’s not a jumping board for your rants against big oil and evil corporations and lobbyists and a plea for gub’mint to come save us. 

I mean, you can’t tell us that out of 80,000 chemicals, “99 percent of chemicals in use today have never been tested for their effects on human health” and then expect me to see your diatribe as a rational argument based on facts and science.  You might as well title your book 79,000 Ways to Prove a Negative. 

I’m not sure what this is.  It might be a desperate grasp for control over something that saps all control from you:  maybe, if we just avoid “bad” things, we’ll be ok.  It might be your standard “evil corporation” BS in a carcinogenic context.  Maybe it’s a branch of the simplistic “natural = good, synthetic = bad” train of thought that pervades the dietary realm.

But I do know one thing:  When I ask five doctors with over 100 years of oncology experience what caused or could have caused my cancer and they tell me “nothing, it was just a random mutation and some bad luck,” I’m probably going to accept that answer.  Rather than, you know, screaming at my mother for washing my hair when I was six months old or letting me drink apple juice from a plastic cup.

Nick’s Inferno: Part 3 – Healthy by comparison

After rolling through the hospital for what seemed like forever, I finally arrived at my destination: the 5th floor of the Weinberg building in the Hopkins cancer center.  Unfortunately, the 5th floor is where the bone marrow transplant/critical patients.  It was not a happy place.  But the  silver lining that I was one of the healthiest people in my immediate area for once.  The downside is that I was treated almost like I was a “critical” patient.  This meant I received an incredible amount of attention.  Great if I’m in active distress; not so great if I’m just recovering from a procedure. 

Emily was with me while I got settled in the room, so she was able to run and get me some actual food.  I could handle a short hospital stay.  But I wasn’t enthusiastic about my first substantial meals in weeks being of the hospital food variety. 

I can’t say I was “happy” to be in the hospital.  I certainly was not.  But I wasn’t as irritated or upset as you might imagine.  I had been in absolute hell for about three weeks.  I was sick of it.  You reach a point during all that when *anything* would be an upgrade, and laying there in a hospital bed was an upgrade so long as I wasn’t in pain.

The blood patch certainly helped things along, but I was still in rough shape.  Getting rid of the serious headaches and being able to get up just made me focus on the other things wrong with my body – particularly, the weakness that comes from not eating much for a couple weeks.   It’s almost like we stripped away the most significant problems to reveal the other ones that had been masked the entire time.

And damn, they don’t leave you alone in that joint.  I get that I was on the “critical care” floor (I was not “critical;” that’s just where they had an open room).  But these people never stop.  Vitals every couple hours (although the nurses kept asking me things like “do you work out?” and “are you a runner?”, apparently because of my low heart rate and BP.  As you can imagine, I’m not asked these questions very often.  It was a pleasant surprise).  EKG when you come in.  Establishing a neurological baseline, which means asking me a million questions (everything from “What season is it?” to “Count backwards from 100 by 7).  Periodic bloodwork.  IVs.  Heparin injections.  Rounds with teams of doctors, many of whom weren’t much older than me.  Pissing in a jug (they monitor fluids going and and coming out).  And a hospital is where sleep goes to die:  I wasn’t exactly mobile with two IVs stuck in my left arm, nor was I comfortable, nor was I going to get much sleep with vital sign checks every couple hours. 

But my physical condition improved.  The real struggle was mental.  And for the situation I was in, I was remarkably upbeat. 

I have no idea why.  I guess at some point I just concluded everything was stupid.  I mean, there I was, late on a Friday night miles from any place I would consider home laying alone on the critical care floor of a Baltimore hospital.  I guess I might have expected this in the fall or early this winter.  But I was about five months out of remission, technically as healthy as I have been in a long time (cancer wise), and completely grounded for nearly a month because of a tiny mischievous needle. 

I was all alone and there’s not too much going on inside these places, so I had a lot of time to think.  And all I could think about was how absurd the whole ordeal had been.  I mean, everything.  From lump to Hopkins.  It was completely messed up by “25 comes down with cancer right before he takes the bar exam” standards.  It’s always seemed sort of surreal.  But by this point, it had become almost comical.  I guess that’s the only way I made it through a lot of this stuff – by being able to laugh at a lot of it.  And this was just the icing on the cake – of course I would end up hospitalized months after the cancer went away because I decided to do some preventative treatment that would probably wouldn’t cause any problems at all.  Of course I’d breeze through hardcore chemo and nearly die from a little spinal tap.  I mean, why not.  If at any point, this stuff started making sense, then I’d start to worry.

But I wasn’t worried then.  Because then, even as I had been dragged along “rock bottom” for about a week, I finally had some hope.  I finally had a reason to believe that the next day would be better, and the day after that would be better, and so on.  To be honest, there were some times during my stint on the DL where I wondered if I would ever get better.  I would think I was getting better, and then three days later I’d end up back in the hospital.  That had a cruel way of crushing a soul.  And it wasn’t until I was holed up in a hospital bed, ironically, that I began to feel a little bit better about the whole situation.  By late Friday night, I was feeling as good as I had in months.

Of course, I got about an hour of sleep that night and woke up well before 8am “breakfast.”  Oh man.  I’m normally pretty tolerant of stereotypically bad food – I think airline food is great and I was always a big fan of dorm food.  But this…yikes.  Maybe it was because I hadn’t eaten anything in a few weeks and this was not the best stuff to use to break in my stomach, but…not so good.  Fortunately, there was a fair amount of food and a ton of liquid (coffee, milk, and OJ), so I was at least able to drink some calories.

Shortly thereafter, I had tea time with a team of doctors (4!) and got to tell my fun story for the three millionth time.  They were either not impressed with my story or impressed enough to let me go, but only if I could stand and walk around for a good chunk of time without re-entering headache city.  They didn’t have a treadmill in my room, and I was afraid of getting lost in the hospital, so I decided to do some laps around the fifth floor.

And….not happy.  Cancer centers are not happy places to begin with but this was pretty much the polar opposite of happy.  I won’t get into too much detail, but there were a lot of people going through some really tough times on that floor.  You can’t do much besides think about them and pray for them – trust me, I know how helpless that is – but man, if my desire to get better ever waned for a second, one lap on the fifth floor was enough to make me fight like hell to get healthy again.  To the commenters who told me I should have been a doctor…a few minutes walking around the fifth floor was all I needed to preclude that from ever happening.  I give those doctors a ton of credit. 

But despite the mental shellacking I took during my walk, I stayed headache free.  I came back to my room and tried sitting for a while.  Felt nothing.  I had passed the tests.  It was going home time.

Me, now

Not dead.  Able to walk since last Saturday; able to eat normal amounts of food since last Wednesday.  Which has led to me walking to get obtain food as part of my Calorie Recovery Plan:

I returned to a state of near-normalcy last Thursday.  I got progressively better throughout the weekend. I went back to work yesterday, and I’m sure I was the happiest guy in the office on a Monday.  Also of note – I’ve been out for over a month, but the metro escalator at Farragut North is still busted.  So in case you were wondering what takes longer: curing cancer or fixing a Metro escalator, you now have your answer.

But backing up a bit…I have no idea what the hell that was.  Neither do the 13 (literally) doctors I saw in the past two weeks.  We all assume I was suffering from adverse after-effects of the spinal taps – this makes sense since they started only after they punctured my spine – but that was not normal.  That wasn’t supposed to happen. 

The symptoms I experienced were less puzzling than my absurdly inconsistent recovery.  The headaches, nausea, and periodic vomiting spells weren’t awesome or normal, but they were all within the realm of things that can happen.  What confounded doctors the most was the fact that I would get better and worse several times within a week.  And really, I can’t even explain how inconsistently consistently awful I felt, if that makes any sense.  I had the LP on Wednesday, was ok on Thursday, and felt terrible that entire following weekend.  I called Hopkins late on Monday; Dr. Ambinder and I talked on Tuesday and I started feeling better that afternoon.  I was getting better through Thursday, stopped getting better on Friday, ended up in the hospital on Saturday, woke up feeling awful on Sunday, and then began to feel very good Sunday night.  I talked to the people at Hopkins again on Monday to discuss my ER visit, but by that time, I was feeling pretty good.  I felt good again on Tuesday, regressed slightly on Wednesday, and then ended up in the ER again on Thursday.  Then I was in the hospital on Friday and Saturday, got better Sunday and Monday, and felt like crap this Tuesday.  I woke up feeling pretty terrible on Wednesday; within two hours, I started feeling better.  And I’ve been improving ever since.

That, as much as anything, was what killed me.  During chemo, I pretty much knew how I was going to feel every day.  Nausea the night of.  Crappy the day I finish the Prednisone.  Bone pain with the Neupogen.  A little worse after each cycle.  And so on. 

Here, nothing made sense.  I’d talk to the folks up at Hopkins and I’d be feeling fine.  Two days later I’d be in the ER.  I’d e-mail people at work and tell them I expect to be back at work in a couple days.  A couple days later, I’d e-mail to tell them I just got out of the hospital.  For two weeks I felt better in the evening than I did in the morning, then I felt better in the morning than I did in the evening; now I feel crappy until I get out of bed.  Most of the time, I felt like hell if I stood up.  Except when my headaches and nausea got really bad – then I would stand up and feel better.

But while doctors are stumped, I am not.  In fact, I caused all this.  By POSTING THE PICTURE OF GEORGE W. BUSH ON THAT AIRCRAFT CARRIER WITH THE "MISSION ACCOMPLISHED” SIGN BACK IN DECEMBER.  That was a pretty good way to signal the end of “major combat operations.”  Really misunderestimated that one.