Monday, January 13, 2014

A Tale Of Two Kellers

I've been following Lisa Bonchek Adams for quite some time.  She's a patient advocate and cancer truth-teller, discussing the details of her ongoing ordeal with stage 4 breast cancer in an open and honest way.  I found her shortly after my own diagnosis, when I was confused and disoriented, having stumbled into a world that no longer made sense to me.  People like Lisa are important for several reasons.  Let's make a list.

1.) They point the way for cancer patients.  According to the American Cancer Society, an estimated 1,660,290 people were diagnosed with cancer in 2013, roughly 72,000 of them were young adults, or people aged 15-39.  I was diagnosed at 25.  I had no idea what to do.  Immediately, I switched into handler mode, but quickly lost momentum and crashed into a sea of depression.  There isn't a lot you can do, lost and alone, to help yourself in the midst of a crisis.  Part of a healthy recovery includes a strong support network.  People like Lisa provided that for me, as I took to social media to commiserate and learn from those who had gone before me.

2.) They point the way for the rest of us.  Having cancer is awful.  But it teaches you things.  If you listen long enough to someone who has the disease, they might just convince you of what's really important in life, and you might just become a happier, healthier individual for it.

3.) These stories must be heard.  They contain hard truths.  Death, suffering, grief, depression, and the macabre are all realities in this life.  To ignore the truth means to become less adjusted and more easily taken in by falsehoods.  There are a lot of falsehoods when it comes to cancer.  Most everyone gets it wrong.  It's hardly ever represented truthfully, because the truth is too painful for the culture of ignorance we've created.  In one of my first posts, I discuss this idea in detail.  You can read it here.

In a recent twist on Lisa's story, two op-eds were published by Emma and Bill Keller.  Emma's ran in the Guardian (since pulled), and Bill's ran in the New York Times.  Emma suggested that Lisa's approach to disseminating information revolving her struggle was offensive.  Bill backed her up when the public outcry delivered a swift backlash.  There's a great piece summarizing the whole incident making the rounds.  It was written by Megan Garber and ran in the Atlantic.  You can read that here, complete with featured tweets from Jeopardy record-holder Ken Jennings and cancer patient advocates.

The question here is how we, as a society, would like to operate.  We can certainly choose to waltz through life peeking out from the wool over our eyes in some misguided attempt to preserve innocence.  That's the route the Kellers have chosen.  They're very adamant about the terminally ill keeping quiet, not ruining it for the rest of us.  Because the rest of us will surely never die.  Suffering will never touch anyone but Lisa Bonchek Adams, so let her do her suffering somewhere soundproof.  It's my firm belief that looking away never helped anyone, and the only way to move forward on an issue is to have an open and honest conversation about it.  And that's exactly what Lisa has been doing all along.  If cancer ever kills me, you can be sure I won't go quietly.

Friday, January 10, 2014

Upcoming Interview With CRI

I had an interview recently with the Cancer Research Institute, the leading advocacy group for immunotherapy research, about my experience with the treatment and my life since.  I won't spoil anything, but in my completely objective and unbiased opinion, I think it may be the greatest interview since Frost/Nixon.

When a cancer survivor does it, it's not a crime!

I kid.  But it's still a worthwhile read.  In it, I talk about my approach to life after cancer, my relationships with those important to me, and what I'm trying to do with my life now that it's been given back to me.  It's not a bad little tale, mine.  And it reminds me every day to try my best to realize all of the lofty goals that popped into my head immediately after I was diagnosed.  Most of them were common sense, but things that still seemed so impossible to take action toward.  That is, until the threat of impending death forces your hand.  When you realize you have a very concrete deadline to accomplish whatever it is you believe you're here for, you start working a little harder to get it done.  In my case, spending time with those closest to me, helping out as much as I can to make the world a little better than it was when I got here, and living life on my own terms are what's important.  There are many specifics involved in each of those, but we'll save that for another post.

The interview will run in print to subscribers.  And anyone can see the extended interview and extra pictures from the shoot on CRI's website.  I'll let everyone know when it's up.  Happy reading.

Tuesday, December 24, 2013

Flu Vaccine Myths: A Young Adult Cancer Survivor Dispels The Misconceptions

It's that time of year again, when people crawl out of the woodwork shouting the failures of hundreds of years of technological advancements to the heavens.  The bandwagon of mistrust in big government, big pharma, big bad doctors, and misplaced faith in big unsubstantiated opinions is about to grow three-fold like the Grinch's heart on Christmas morning.  This is, after all, flu season.

The Facebook posts are running rampant: "Flu vaccine kills one boy in Texas;" "Six grandmothers in Detroit;" "Three hundred groundhogs in Montana;" "One hundred and one Arabian Nights;" and, "Twelve dancers dancing during a popular holiday sing-a-long before horrified onlookers."

Sometimes, they're framed in the form of questions designed to incite sensational reactions from the public:

"Is the flu vaccine useful?"  "Does it work?"  "Should we stop getting the flu shot?"  "Should we stop waiting for traffic lights and wearing seat belts?"  "Is eating raccoon poop really going to kill us anymore?  I sprinkled some on my oatmeal this morning and I feel just fine."  "Are grizzly bears suddenly the best holiday gifts for teens?"

Some of these headlines are disturbing.  But make no mistake, they are all completely and unquestionably real, aside from the ones that are not.

I'm going to talk about the most common misconceptions regarding the flu vaccine, and why it's still essential that every living human do their duty to the species and get jabbed in the arm with a needle this holiday season.  I will be using my unique perspective as a cancer survivor to talk about some of the immunological aspects of vaccination science.  Try to relax, you may feel a little pinch.

1.)  The Flu Vaccine Causes The Flu

This is completely impossible.  The virus has been modified so that it's unable to proliferate and give you the flu.  This is not new science, and it's been used every day for over a century.  The shot form of the flu vaccine specifically doesn't even include the actual virus.  It's called a subunit vaccine -- a vaccine that only contains certain parts or proteins of a virus in order to solicit an immune response to them.  The nasal spray variety includes a strain of flu that's been forcibly evolved by passing it through hundreds of chick eggs in order to create a version of the disease that can't infect humans.

2.)  I Always Get The Flu After Getting The Flu Vaccine

You don't (See number 1), but I can explain the reason why you might think that.  Your immune system causes most symptoms you experience when you get sick -- headaches, chills, fever, nausea, aches and pains.  Your body does all of that stuff to itself.  A vaccine is designed to mimic a real infection, thus soliciting a real immune response.  In recent years, vaccines have gotten better at diminishing side effects.  Some say there shouldn't be any at all with the new rounds of flu vaccines.

Here's an anecdote.  When I was going through immunotherapy, I was injecting obscene amounts of a protein called Interferon.  Interferon is one of the proteins your body produces to make you feel so crappy when you get sick, and I definitely felt like I was sick all the time.  That was coincidentally the year my boosters were up, and I ended up getting the flu shot, pneumonia vaccine, and the tetanus shot all at the same time.  I ended up in the hospital, and after they pumped a bag of fluids into my arm, I felt a little better.  Though I'm informed enough to know that the reason for this was my body's immune response to the vaccines, on top of my already overwhelmed immune system.  My case was a fluke, but, subsequently, if you're currently undergoing treatment for cancer, you should consult your PCP and your oncologist to find out about side effects.

The American Cancer Society recommends that all patients get the flu shot.  Read a summary of their recommendations here.

3.)  Vaccines Don't Work

This is false.  Edward Jenner was born in 1749.  He developed an hypothesis that contracting cowpox would prevent a person from coming down with deadly smallpox.  This is actually where the word vaccine originates -- from the Latin vaccinus, or, "pertaining to cows."  Smallpox was eradicated from the planet in 1980.  Notice how long it took to eradicate the disease from the time a solution was discovered.  The reasons for this are, 1.) this was the first major step and represents the early days of vaccination science, and 2.) viruses are effing complicated.  They're persistent, fast-evolving, complex organisms.  Scientists have to scramble to figure out the best ways to deal with them.  The flu is one of the most complicated viruses around.  Seriously, look up the science, the flu is a tricky mistress.  Start your research here with an article from BBC Science about the complexity of viruses and why they're so hard to beat.  In the case of the flu, it's still difficult to predict which strains will run rampant each flu season with 100% accuracy, but getting the shot will offer some measure of protection regardless.  And, to be fair to smallpox research, a campaign to globally eliminate the disease wasn't undertaken until 1959.  If you're interested, you can read more about the history of the disease and its eradication here.

And here's a nifty bulletin from the WHO providing stats and figures for the successful use of vaccines, including the fact that in the U.S., incidence of infection from the nine diseases recommended for vaccination has decreased by 99%.

4.)  Vaccines Contain Terrible, Awful, No Good, Very Bad Ingredients

The most commonly-cited ingredients of the flu vaccine are mercury and formaldehyde.  Okay, let's talk a little about chemistry for a moment.  Mercury is an element.  It can be found in different chemicals and substances, just like any other element.  The ingredient in question is called thimerosal, which breaks down into ethylmercury.  Ethylmercury is a substance that metabolizes quickly and exits the body without causing a toxic build-up of mercury.  Again, this is the type found in vaccines in the form of the preservative, thimerosal.  The dangerous sort, methylmercury, bio-accumulates through the food chain and can build up in the body through dietary intake, and create all sorts of risk factors to an individual's health.  This is why women aren't supposed to eat certain fish while pregnant -- the kind like shark and swordfish that are at the top of the food chain, because they'll have high concentrations of mercury coursing through them due to all the lower inhabitants of the food chain also consuming methylmercury.  Environmental contamination of mercury is also a factor in choosing your fish.  If you don't care much for facts and still like the idea of having mercury in your shot regardless, you can ask to have one without thimerosal in it.

Formaldehyde is an organic chemical that occurs naturally in the body.  But, like most everything else, too much of it can be a bad thing.  It's produced internally, and we ingest it daily through our diet and other means, like breathing.  Formaldehyde is everywhere.  Though, it also metabolizes quickly, and doesn't easily accumulate.  The fact is, you get more formaldehyde by eating a pear than you do from the flu vaccine.  Here's a convenient guide.  Highlights to keep in mind: the most formaldehyde you'll probably get from vaccines will come when you're a baby, at the six-month checkup, and the amount will be 160 times less than the amount naturally produced by your body every single day.

There are other ingredients cited, and they all have equally reasonable and mundane chemical explanations.  Why not do some reading?

5.)  My Decision To Abstain From Getting Vaccinated Doesn't Hurt You

This is a reasonable thing to think.  Because, what you do is your business, right?  Well, not in the case of public health.  It turns out, there's a thing called Community Immunity, or (an even sillier though less poetic name) Herd Immunity.  Herd Immunity is a state or condition that's met when a sufficient amount of the population is immunized against a given disease, cited around 75-95%, though it varies for specific diseases.  Herd Immunity provides a safety net for society, and allows us to successfully contain a virus.  If you don't get vaccinated, you're running a cost-benefit analysis and playing a fun casino home-game.  Only when you lose, the risks may be a little higher than you bargained for, and include the extermination of the human race.  By not getting inoculated, you're providing a medium for the flu to evolve and become even harder to beat.  Herd Immunity is a complex science, and you can read more about it here.

There you have it.  Those are the top flu myths around, and, conveniently, my own personal favorites.  There are many other false claims and misconceptions about the flu vaccine, such as, they cause autism, asthma, allergies, Alzheimer's, narcolepsy, blood disorders, the starving of puppies, your parents' divorce, and that they're descended directly from an intimate meeting between Satan and all those Hugo Weaving characters from Cloud Atlas.  I won't go into these, because there is absolutely no clinical research to show that there is merit to any of them, and a whole lot of research that says they're bunk.

Parting tip: Always be wary of claims suggesting the rise in a certain disease or condition is dependent on any man-made means -- the rise of rates is proportional to the rise in population (i.e. there are more people, so there will be more cases of X).  Make sure to do your own research and be your own advocate, but, at the same time, pay attention to the actual research.  Facts are important.

There are other flu vaccine guides out there on the interwebs, including this one from Gizmodo, which is extremely thorough and comprehensive.

Friday, December 20, 2013

My Cancer Brings All the Crazies to the Yard

In today's day and age, it's important for the patient to be his or her own advocate.  It's an unfortunate reality, but as soon as something happens to you, you've unwittingly opened yourself to an entirely new world that you may not be prepared to successfully navigate.  And, while doing your best to focus on the issue at hand, it's easy to be taken in by snake oil and pseudoscience.  There's nothing worse than a cancer opportunist -- someone who uses your illness to his or her advantage, pushing ineffective and sometimes dangerous products and treatments.  I talk about some of my favorite fake treatments in another post, The Dangers of Alternative Health: 3 Treatments That Can Cause Some Serious Damage.

The thing about cancer is that it's a biological process -- several, in fact, occurring simultaneously.  Cancer is a series of genetic and epigenetic malfunctions.  It isn't caused by any solitary force.  And it certainly isn't caused by mysterious "toxins" with no names or identities.  It isn't caused by your attitude either, or your karma (by the way, the western definition of karma is not even entirely accurate), or even when your room mate peed in the mini fridge in your dorm room the night he was really drunk.

The process looks like this.
Having cancer is a desperate situation for many people.  And it brings out the best and worst of the human race.  There are several reasons to be wary of anyone who tries to sell you something when you need it most.  The sad fact is that many people fall prey to these villains, foregoing entry into legitimate treatment programs and significantly decreasing their odds of survival.

The first and most important line of defense is to do your research.  In today's culture, fact-checking has become a long-forgotten practice.  Claims are made, and whoever yells the loudest is always declared the most honest.  That's not how science works, unfortunately.  In the real world, experts propose hypotheses and test them until they can be fully evaluated and verified.  And, as Neil deGrasse Tyson put it, "The good thing about science is that it's true whether or not you believe in it."


For whatever reason, the age of information has had the opposite effect of informing the public.  It could be that with all of this information at hand, it makes it easier for people to believe that they know much more about a particular issue than they really do.  It still takes years of schooling to become an expert in a given field, like oncology.  The danger arises among those who falsely profess a knowledge of healthcare and push miracle cures on the public that only they have uncovered through collecting pee from public parks, or shooting coffee into your rectum.  It's not easy to determine whether or not modern snake oil salesmen peddle their wares with the intention of making money from their faulty products, or if they genuinely think what they're doing will provide some benefit.  I tend to believe the former in most cases.  The current state of healthcare in America reminds me of my favorite quote by science fiction writer Isaac Asimov: "Anti-intellectualism has been a constant thread winding its way through our political and cultural life, nurtured by the false notion that democracy means that 'my ignorance is just as good as your knowledge.'"

All of these alternative therapies will bankrupt you, because they're obscenely expensive and your insurance won't pay for them, because they aren't medicine.  Mainstream healthcare is also extremely expensive, to be fair, and the U.S. is by far the most expensive nation in which to get sick.  But there is a mechanism in place to at least ensure that a patient can find treatment backed by real medical science.  If you aren't sure how to find out whether or not a treatment is bogus, just look for the clinical research.  Real treatments are published, peer-reviewed, and independently verified over a number of years in order to ensure their safety and effectiveness.  Cancer is tricky, because we can't at this point cure it, and that scares many people into thinking that's because traditional treatments don't work, when really it's just the best we can do at this point.  With the advent of new immunotherapy research, results and patient outcomes are looking even more promising these days, and we can expect a new wave of even more effective treatments very soon.  Human innovation is a process.  Yes, people are greedy, and things still cost money.  But the most villainous and greedy among us are the opportunists who take advantage of the desperation of others.