Archive for the ‘advocacy’ Category

Many cards in our favor, some we dealt ourselves

June 11th, 2010

In this recent blog post, I discussed how my recovery after stem cell transplant has been much faster than average, and there are probably many reasons why that might be.  No doubt the fact that my donor’s genetic markers matched my own perfectly—well, the genetic markers that hospitals check were a perfect match, anyway.  There are literally hundreds of minor proteins that immune systems use to determine if cells are self or not. But maybe many of those were matched more than average, just by chance.  I know I’m not out of the woods just yet, but there are some other possible reasons for my rapid recovery so far.

Greg and I are fortunate that he rarely needs to go to an office.  Greg is a computer programmer, web designer and database manager; he has to work in an office about five days a year, and he goes to work-related retreats and conferences a couple of weeks a year. Otherwise, he’s at home.  As a result, his exposure to infectious agents that in me might cause life-threatening illness is extremely limited.  Most people don’t enjoy this situation, and so I’m sure the average person undergoing stem cell transplantation is exposed to many more infections than I have been.

But Greg and I have been extremely diligent as well.  We’ve taken extreme measures to guard against infection.  We’ve not allowed anyone in our house.  All food, gifts, and mail is wiped down completely with bacteria- and virus-killing chemicals. (Yes, these are nasty . . . and that’s the point: Kill or be killed.)  We got a high-end HEPA filter used in hospitals and endorsed by the American Lung Association.  And these measures are all in addition to the regular extreme rules about cleaning, washing clothes, washing dishes, and such.  And of course, I was a virtual hermit the entire time (with a couple of approved exceptions, when we walked in the park with friends).

Maybe all of this was overkill, or neurotic, or unnecessary.  I know our lead nurse thought so; she promoted much more lax precautions.  We didn’t buy what she was selling, however.  Neither did my physician. And even if my physician had agreed that these extra steps were a waste of time,  I would’ve ignored him.  If ever there was a time for overkill, I’d say this has been that time.  When it’s time for my nurse’s stem cell transplant, she can be just as lax as she wants.

I have also been exacting in my drug schedule, and Greg has helped a lot with that.  And we’ve learned about the drugs I’m taking so we can play a role in my care.  That has been very important; on three separate occasions, my physician has prescribed a drug, and the wrong dose.  This has happened every single time I have undergone cancer therapy (and I’ve had a lot of cancer therapy).  They screw up the dose, and we’re the ones who suffer.  I learned this lesson during my days of AIDS activism:  Watch the physician’s every move and challenge when necessary; physicians are the top of the hospital’s class hierarchy, and no one else can challenge their actions (a stupid, archaic system that harms only one person: the patient).

Maybe our extreme safety measures had nothing to do with my unusually rapid recovery after the transplant.  Maybe my insistence that the nurses gown, and wash their hands in addition to using ethanol gel, and use sterile technique in all their dealings (especially when accessing my chest port) played no role in my acquiring no nosocomial infections, but I’ll bet it did.  The items on this list of things I insisted of my nurses are all things they normally never do, and I had to fight to get them to do them (as I always do).  I rarely see nurses wash their hands, and when I’ve asked them to do so, they say the ethanol gel is enough.  But of course nurses rarely use enough gel (research shows you have to use a lot), and the ethanol has to evaporate entirely (leaving dry hands) in order to kill microorganisms, and nurses rarely wait for this.  And of course, washing hands plus using ethanol gel would be better than either precaution alone.  Even the infectious disease physician on my team said these measures, including sterile port access, were not important, despite solid evidence to the contrary.  In arguing with me, that same infectious disease physician repeatedly said that the infection rate in the cancer infusion bay was “acceptable.” That rate, by the bye, is three percent for blood infection; I wonder how many people have to get sick with blood infections before he’d consider the rate unacceptable? Four percent?  Five?

In any event, I’d be willing to bet that all these things Greg and I have done—keeping away from people, wiping down all the groceries, learning about my disease, and demanding excellence from the hospital staff and physicians—surely all of these have had a huge impact on my health.  I’m sure some luck was involved, too.  So some of the cards were dealt to us by chance, but we dealt some of the cards, stacking the deck in our own favor.

It might seem weird that a physician and the main nurse working on a team together would not be on the same page about therapies, or how to reduce risk of infection, or whatever.  It certainly is unfortunate, but in my experience it’s not uncommon at all.   It’s surprisingly common for the members of a single team to have differing views about your care, and the members of that team don’t bother to coalesce their views into a single message.  The only sense I can make of this is that the egos involved are so unbridled that none of them are willing to budge.  Of course, this leaves the patient confused and often unable to make an informed decision.  And it’s cruel.  It’s especially cruel to the patients who cannot, for whatever reason, advocate for themselves.   I see no evidence that physicians’ very high view of themselves will change anytime soon.  And this single factor alone is one of the best of the many reasons why hospitals should have formally organized patient advocacy departments that are facilitating and conducting real patient advocacy, and not just walking patients through insurance paperwork (which is what most of them do now).
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She’s with Ehrenreich

June 10th, 2010

My good friend, Johanna Wilson, recently posted a comment to my last blog.  I find it so compelling that I’ve deleted the comment and reproduced it here in its entirety.  It is honest, humble (perhaps a bit too self-deprecating, though), and I think quite representative of the way people with cancer feel—and a strong denunciation of the popular view of how we feel.  This deserves front-and-center attention:

I’m with Ms. Ehrenreich in many of her objections to our society’s popular perspective of cancer.  Most of the “cancer people” I’ve spoken with don’t like the term “survivor.”  In my childish frame of reference, I survived chemo, not necessarily cancer. (It was the cancer that failed to survive the chemo!)  It seems to me that survivors are people who withstand a terrific onslaught because of something they did to promote their survival.  If you live through a catastrophic event as a passive observer, you just got lucky.

I also jump on the bandwagon of folks who object to the militarization of commentary on cancer: “battle,” “struggle,” “war.”  I don’t remember any battles or war.  I just remember treatment.  Likewise, terms like “brave” and “determined” didn’t apply to me.  All I did was have treatment.  My medical team and my caregiver put forth all the effort.  I just “took it.”  I certainly never wondered why more hadn’t been done in cancer research (speaking of Ms. Ehrenreich on that last point there).  I felt lucky to live in a society that could provide treatment, and I was lucky to be able to access it. (I know you share that appreciation.)

I may lack an important personality trait that promotes the survival of the species, but I just never felt any anger or sadness about having cancer. (A feeling of loss of control right there at the first, but that passed.)  Fortunately, I never wondered, “Why me?” (I’m always tempted to ask, “Who would you nominate as your replacement, then?”)  The cancer didn’t pick me. I may have actually contributed to its development with some lifestyle choices:  Poor diet, lack of exercise, stressful response to work, etc.  No one to blame except possibly myself.

What I did experience in my own cancer journey was an outpouring of friendship and caring, including the way out of the way side trip you and Greg took to visit me!  I am confirmed in the absolute knowledge that hair and boobs and fingernails are so overrated. (Well, fingernails and toenails are nice, but they’re not part of my identity.) For a brief time, my concerns were bigger than the petty irritations of daily life. (I’ve forgotten most of that lesson. Marty says I’ll have to repeat the exercise.)  Mind you, I’m quite aware that my journey and treatment pale in comparison with yours, but for me, it was a difficult time, but not a negative time. It just was . . . only bigger.  I’m not sure it’s any more appropriate to react emotionally to cancer than it is to an “angry sea” or a “merciless desert sun.”

That’s my story and I’m stickin’ to it! Let the games begin!

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Pop Culture Watch: Optimism and cancer

June 9th, 2010

From a recent episode of the fantastic series, Glee (quote from the character Shelby Corcoran, played by the even more fantastic Idina Menzel):

I wanna a look so optimistic, it could cure cancer.

More evidence that Ehrenreich’s thesis is correct.  People!  That ain’t it.

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There’s mono, and then there’s mono

May 27th, 2010

In an earlier post I discussed cytomegalovirus (CMV) primarily in relation to its impact on the immunosuppressed—people with AIDS and those of undergoing a stem cell transplant, for example. As a prelude to that discussion, I mentioned that CMV causes mononucleosis.  This piqued a reader’s interest:

. . .[I] found it interesting that CMV was related to mono—I’ve had mono, though apparently tested negative twice before positive, but am CMV negative—thankfully!

Presumably, the test for mono the reader mentions was a test for Epstein-Barr Virus, and not CMV. Epstein-Barr Virus (EBV) is another herpes virus that is closely related to CMV, and EBV causes a disease named infectious mononucleosis.  CMV causes a disease very similar to mono, and many authorities call that disease infectious mononucleosis.  The Centers for Disease Control says the disease caused by CMV is a “mononucleosis-like illness,” whereas the National Institutes of Health states flatly that both EBV and CMV cause mono.  When I took microbiology, I apparently learned virology from the NIH school of thought.  But it seems more authorities discuss EBV in relation to mono, perhaps because EBV is more likely to cause disease at initial infection (even though many show no symptoms), whereas CMV usually causes no or very mild symptoms in people when they catch it.  But both are attributed with causing a disease of the same name.  So why the hell is that?

First, it’s important to note that these two viruses are quite closely related—on the evolutionary tree of life, I mean.  And so EBV and CMV share essentially all of their genes, with some minor variations (minor for sure when compared to the total genetic diversity of life, or even that among viruses). Because of this, it is no surprise that they cause similar disease.

Second, it’s also important to keep in mind that viral nomenclature is a complete mess.  The international rules of nomenclature that have been well-established in zoology and botany for nearly a hundred years (but deriving from rules that are centuries old) are simply not in place for viruses.  The best recent example of this is the HIVs.  When Montagnier in France first isolated a virus he suspected to cause the plague of immunodeficiency that was killing off mainly gay men, he named it LAV (for Lymphadenopathy Associated Virus).  Then Gallo in the USA named it HTLV-III (for Human T-Lymphotropic Virus III)—and that name is now used for a completely different virus. The virus that causes what would be named AIDS was also called ARV (Adenopathy Related Virus) for a time.  Ultimately, yet another name was established by international convention (sort of): HIV. But now we know that the thing we call HIV is in fact at least two distinct groups of viruses that entered the human population via separate events.  What a shambles.

I only point this out because this confusion about viral nomenclature spills over into disease nomenclature.  Lots of named diseases—”the flu,” “the cold,” “AIDS”—are in fact each caused by many different, often closely related but nonetheless distinct species.  And this unfortunate practice is not restricted to viruses:  Human “malaria” is caused by one of four quite distinct microorganisms, and the characteristics of the diseases they cause are just as distinct.  This is all to say that the tiny creatures that cause disease evolve just like the bigger creatures they live in. Species split, become isolated, acquire mutations independently, get different, and ultimately become two species.  Although the new species did “get different,” they also share almost all of their traits by inheritance.  Whatever characteristics the initial, ancestral species had, the two new descendant species will very likely share most of those same characteristics.  In other words, close relatives are a lot alike because they come from common stock—something we all know from our own families.  And this is why two differently named viruses can cause the same named disease (even though, in a perfect world, virologists would stop this nonsense).

So the reader is right:  One can have a diagnosis of mono without CMV, and it’s CMV—not EBV—that is so problematic for those with trashed immune systems.  All important points of clarification for those who might be facing a stem cell transplant.

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Capitalism and cancer

May 23rd, 2010

The amazing Barbara Ehrenreich makes a connection, just after the crash of 2008, the 160th anniversary of the publication of the pamphlet that ignited the world:

The Manifesto makes for quaint reading today. All that talk about “production,” for example: Did they actually make things in those days? Did the proletariat really slave away in factories instead of call centers? But on one point Marx and Engels proved right: Within capitalist societies, or at least the kind of wildly unregulated capitalism America has had, the rich got richer, the workers got poorer, and the erstwhile middle class has been sliding toward ruin. The last two outcomes are what Marx called “immiseration,” which, in translation, is the process you’re undergoing when you have cancer and no health insurance or a mortgage payment due and no paycheck coming in.

You can read the whole blog entry here.  It’s an older post, but well worth the read . . . as is everything Ehrenreich’s ever written.

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Faith in a seed

May 15th, 2010

Today, Greg and I (masked and gloved) went to Walden Pond for a second visit, this time with our dear friends Alison and John.  We hiked the trails for a few hours.  There was life all around us—trees, insects, birds, and mammals were obvious everywhere we walked.  Walking with my loved ones, I thought of Thoreau.  Thoreau saw majesty in the smallest creatures.  As he famously wrote in Walking:  ”In wilderness is the preservation of the world.”  So much of my existence lately has been about killing bacteria, and killing viruses, and killing cells, and killing . . . and fear of death. Today was only about life, and living.  I needed today.

After Walden, we went into Concord and walked around, saw the beautiful Concord Library, Sleepy Hollow graveyard, and other historical landmarks.  It felt great to get out, especially at Walden and in Concord, where so much important American history took place—and where the words that would change my life and influence me to want to become a biologist and activist were written.

Were it not for Thoreau, and Emerson, and Alcott, and (to a lesser extent) Hawthorne—but especially Throreau—I might not have become a biologist, and so might well not be in a position to understand what is happening to me right now—my stem cell transplant.  I might not have become an activist, and so might not have the spirit to confront and challenge my physicians when needed. I can say honestly and with no hyperbole:  These qualities—a love and knowledge of Nature, and a rebellious bent—have been utterly essential to my survival since diagnosis.

So, today reminded me of my past, but also gave me hope . . . faith . . . for the future.  I remembered how important Nature is to me, and how important being with Nature is to me.  And I saw the power and majesty of Nature, if only briefly.  And today reminded me of rebellion, and of being young . . . and strong.  Today I walked, and hiked, and talked, and laughed for five hours. Five hours!  It was the most exertion I’ve had since the transplant, by far.

Today I felt strong.  Very strong.

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Some great news, biology, and cooperation

May 12th, 2010

I feel amazing.

I am so energetic, I can barely contain it.  Anyone who has spoken to me on the phone lately can attest.  For the last two weeks, my energy and strength has been rising every day, and now I feel better than I’ve felt in years.  In early 2007, I was in a brief remission, and I felt wonderful, like I’d felt years before—before the fatigue set it, which happened three full years before my diagnosis in 2006.  I now feel as good as I did during my remission, which can only be good news.

Reasons for my quick recovery are many: Being able to eat, no more diarrhea, and, most recently, the cessation of a particularly nasty treatment.  That treatment, with the drug ganciclovir, is for infection with CMV, cytomegalovirus, the a virus that in healthy people causes mononucleosis.  I was taking this drug probably because of a hospital error.  In order to explain, a brief digression into biology is required. (Regular readers shouldn’t be much surprised.)

CMV is one of the most commonly transmitted viruses on the earth.  The probability of contracting CMV rises with every year over one’s lifetime, and virtually everyone has it by middle age.  Despite this, I luckily tested negative in my pre-transplant blood tests.  Even more luckily, my donor was also negative.  This was great news, as CMV can cause blindness, serious lung problems, meningitis, and death in immunosuppressed people—facts that I remember all too well from my AIDS activism days in the late ’80s and early ’90s.  My early blood tests found no antibodies for CMV, and a highly sensitive test for CMV’s DNA, called PCR (for polymerase chain reaction), also showed negative initially.  However, three weeks into my transplant, a weekly PCR test was positive.  This was somewhat odd.

CMV is a herpes virus, and like all herpes viruses (including the virus that causes chickenpox [Herpes zoster]; Epstein-Barr virus; and of course, Herpes simplex I and II), CMV can hide inside cells that it infects, inserting itself into our cellular DNA.  When this is the case, a DNA test of blood might well be negative.  So if the CMV became active later, a previously negative PCR could become positive.  That part wasn’t the odd piece.  The odd part was my antibody negativity.

Antibodies are those amazing, disease-specific chemicals that our body produces in response to invasion by viral infections.  For every virus that infects us, we have a different antibody (well, almost).  But I was antibody negative for CMV, and that was the weird piece.  If I had been infected before, and the CMV had become quiescent, and then reactivated three weeks after my transplant, I would’ve been antibody positive the whole time.  But despite my suspicions of the apparently discordant blood tests, the positive PCR meant action had to be taken, and fast.  Because of the great risk of CMV infection, my physician rightly put me on ganciclovir immediately.

The great thing about ganciclovir is that it is very successful in defeating CMV.  I remember when ganciclovir came to market; it was a revolution for people with AIDS.  Prior to ganciclovir, having AIDS often meant the loss of sight, or worse.  And nothing could be done to stop CMV.  Ganciclovir changed all that.  But the bad news about ganciclovir is that it suppresses the production of blood cells, especially white blood cells.  After I began taking the ganciclovir, all of the components of my blood—my platelets, red blood cells, and white blood cells all crashed.  After an unusually fast and strong engraftment of my donor’s stem cells, which resulted in my having normal or near-normal blood counts for the first time in years, I was back to square one, and continuing to take the drug kept me there.  And to boot, after this blood cell crash, I contracted that awful Cdifficile infection. Administration of ganciclovir has a known association with infections like Cdifficile.  I had to be treated for the apparent CMV infection, but the treatment made me fragile.

Two weeks ago, my DNA test for CMV was negative, as it had been every time after the first test.  I asked my physician why I would not have anti-CMV antibodies if I had CMV (again, antibodies are always produced when we’re exposed to an infection, and we keep them forever).  After some discussion, my physician agreed that this was odd, and hypothesized that perhaps I’d acquired the CMV infection from one of my many pre- and post-transplant blood transfusions.  But that didn’t explain everything, and I left that meeting unconvinced.

Over the next week I puzzled over all my clinical data.  Why was I antibody negative?  Maybe it was because my immune system was so shot that it couldn’t produce any antibodies.  That is very likely true, but even so, I should still have residual (and easily detectable) antibodies from before the transplant, as they remain in the blood months after they are created.  Considering the DNA tests, I wondered how the ganciclovir could have eradicated the infection so quickly; I’d started taking the drug on a Thursday evening, and by the following Tuesday morning all evidence of the viral DNA was gone.  Ganciclovir is a good drug, but that good?  I asked about this the following week (last week).  My physician—who is remarkable in being open to discussion and input—considered my concerns and took a third look at the data, treating them all together.  The negative antibody test, the lone positive PCR result, and the rapid PCR negativity that never reversed—they just didn’t add up.  After this, my physician concluded that the first CMV test may well have been a false negative positive (this can happen with PCR, because this DNA test is extremely sensitive, and in labs where these tests are run routinely [like mine], contamination can be a serious problem).  As a result, we decided to stop the ganciclovir.  My blood cells, in theory, should begin to rise again.

So, yesterday when Greg and I went to the hospital for my weekly appointment, we were a bit disappointed that my blood cells had not rebounded more.  My hematocrit (one measure of red blood cells) was a bit higher, my white blood cells had gained 500 cells per squared cm (up from ~1,100), but my platelets were down from 80,000 to 50, 000 (both well below normal)—a mixed result.

But given how amazing I feel, I wasn’t too worried about this.  I did ask about the possibility of graft failure—a topic I’ll take up a bit later—but looking at the data on the proportion of “my” blood cells that are truly mine verses from my doner, everything looked excellent.

Stem cell transplant is an unlikely business.  Juggling all the variables—the risk of infection, the risk of Graft Versus Host Disease, the many drugs, the side effects of those drugs—managing all these can all be . . . well . . . at times impossible for both the physician and patient.  This procedure is truly at the bleeding edge of our knowledge, and much of what goes on, and why certain aspects of the therapy work or don’t, is yet unknown. When in a situation like this, in my experience two factors are indispensable: patient self-advocacy, and physician finesse.  Having cut my teeth on AIDS activism, I have no problem telling physicians that this is my body, and we must work together, as co-equal partners, to manage my illness, treatments, and recovery.  My current physician agrees, unusually, and we cooperate to achieve our common goal.  That cooperation is a big part of why I’m so energetic and healthy today.

And it’s good to feel great for the first time in a long time.

UPDATE:  See this post.

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Boo Yankees!

May 1st, 2010

I haven’t read the literature on this myself, but my oncologist tells me the data are strong that taking walks—or just getting up and about—has a significant impact on recovery, especially regarding fatigue.  So, as I’m feeling so much better (being able to eat tends to do that), my partner Greg and I decided to take a walk today.  We just got back.

Now, going out is no small thing.  We have to select a very open place, with few people, not a lot of dirt or dust in the air, and not much wind.  I have to wear a mask and gloves to prevent acquiring an infection.   Sunblock is required on all exposed skin, so as to avoid stimulating my immune system, which might risk Graft Versus Host Disease (more on that later).  For the same reason I have to wear long pants, a long sleeved shirt, and, because I’m bald, a hat.  So, days ago, my handsome, sweet, loving Greg—who, bless his heart, knows nothing about baseball—went to the store and bought me sunblock and a hat . . . a New York Yankees cap.   And we’re living in . . . ahem . . . Boston.

So, we happen to be living across the street from Church Park, the so-called “mother ship” of the Christian Scientists—who, you know, dismiss medicine in favor of laying on of hands, prayer, and dead children. (Don’t get me started.)  Anyway, we walked around their reflecting pool, and by the time we got to the other side, my feet were starting to hurt pretty bad from the neuropathy—which has been much better, but walking really brings it out.  So we headed home.  No one had commented on my hat, and I thought we were going to slide into home plate, safe.  Alas, steps from our door, a group of snarky young men, seeing my hat, said, “He’s wearing that mask so he won’t get contaminated by the Red Sox.  Boo Yankees!”

I just want to point out that I despise the Yankees, and this is not my fault.

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Being Katharine Hepburn

April 29th, 2010

One of the drugs I’m on for immunosuppression makes me shake constantly.  It’s getting annoying. This side effect, coupled with the neuropathy in my hands, makes simple tasks, like lifting a fork, difficult.  I wonder if this is a glimpse into how people with Parkinson’s feel?  Probably nowhere nearly as bad, but it bites nonetheless.

The drug, tacrolimus, is not used widely for stem cell transplants, but is used generally for kidney transplants.  It’s strange that I’m struggling to rebuild my immune system, and I’m taking drugs to slow that process way down.  But this is part of the dance—coaxing the new cells to slowly, ever so slowly open their eyes, and think that what they see is self.  If they wake up too quickly, they’ll see clearly and attack.

A related immunosuppressive drug that I’m taking, sirolimus, is used probably by even fewer stem cell transplant centers, but the data on this drug are impressive.  As an inhibitor of the mammalian Target Of Rapamycin (mTOR; indeed, sirolimus is rapamycin), it blocks a complex cascade by which cells proliferate, and so all is slowed down.  The new cells are very sleepy.

I’m very lucky to have these drugs.  My current physician is rare in that he does clinical research, and he is actually good at it (this is rare among physicians).  These immunosuppressive drugs, coupled with other novel treatments, are the reason my hospital’s success with stem cell transplants is so much higher than the national average.  Every day I am grateful that I have the care I have (and my praising physicians is as rare as their conducting good research, so that should tell you how confident I am in my physician).

It is worth noting that both of these chemicals are natural derivatives of bacteria:  tacrolimus comes from one species of Streptomyces, sirolimus from another species of the same genus.  In fact, most of the chemotherapies I’ve had are naturally occurring biological products.  Vincristine—one of the first chemotherapies I ever took, and a potent inhibitor of cell division—comes from the Madagascar periwinkle, once placed in the genus Vinca, where the drug gets its name.  Adriamycin, a chemotherapy that damages DNA directly, is also derived from bacteria. And an experimental drug currently showing great promise, Gossypol, is an unaltered, direct extract of the cotton plant, found in the stems, roots and seeds.  This drug directly blocks bcl-2, the epicenter of my cancer’s existence, but more on that later.

I could go on and on.  Hundreds of our pharmaceuticals come directly from natural sources.   The only difference between so-called “natural” medicine and “western” medicine, again, is that the latter is subjected to careful testing, and the former is not.

I can’t believe I could type all that with this much shaking.

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Cancer is material

April 29th, 2010

You’ll notice I’ve added that image to the blog, a link to The OUT Campaign, a site dedicated to encouraging atheists to come out about their views.  This is something that I’ve had a hard time doing for many years, despite overcoming many other fears years ago (for example, having been out as a gay man since I was sixteen).

The main reason it’s been hard for me to tell others about my atheism is that I have many friends and loved ones who are believers, and I cherish their company, respect their choices, and would hate to offend them.  I have not posted this image to offend anyone.

But for this blog, it makes sense.  Pervasive in our culture is the view that mystical forces—unseen and all-powerful, ancient and misunderstood—are the true solution to cancer.  As Sontag observed in her incredible work, Illness as Metaphor, this view is common to all diseases when the ultimate cause of the disease is unknown, or poorly understood.  For people with cancer, we often become desperate and despondent when therapies fail—I know these feelings all too well.   And so many turn their hope to magical, “eastern” therapies.  As far as I can tell, the only difference between the evil “western” medicine and the enlightened “eastern” “medicine” is that the former has, by definition, been subjected to empirical test, and the latter has not.

But people who hold these unscientific views are unrepentant: About a year ago, I was visiting some friends after yet another therapy had failed, and my cancer had doubled in volume; I was, I think understandably, disappointed, sad, and probably a bit grumpy.  And a person I had only met a day before told me that people who are happy are more likely to survive cancer than sad people.  When I asked for the name of the peer-reviewed journal from which this insight derives, she said she thought she read it in Omni Magazine (a discredited, discontinued, pseudo-scientific publication that promoted supernatural phenomena cloaked in the language of science). Her message here was clear:  It’s your fault that you’re loosing this battle; cheer up, or face the consequences.  (That fall, the fabulous Barbara Ehrenreich eviscerated this nonsensical view; you can find an excerpt here.) So I asked her if she thought it would help if I shoved a crystal up my ass.  She was not amused, and I think, remained unaware of the horrific statement she’d made.  Her husband (another atheist), standing next to me, hung his head in shame.

The view that crystals, and prayer, and laying on of hands can cure people of cancer is growing in our culture.  When last in the hospital, with my horrific C. difficile infection, a staff member came into my room one day and explained that she could perform Reiki on me, which would help my nausea.  My nausea was caused, as she put it, “of course, by unbalanced energy.”  Um, no: My nausea was caused by an infection, thank you very much.

And this is quite strange, given the growing success of modern medicine’s treatment of cancer. Just look at the death rates for breast cancer below.

From the American Cancer Society's "Statistics for 2009."

Death rates were essentially stable or rising prior to the early 90′s, when genetic techniques (and thus, intimate understanding) first became available.  Crystals and the like were being used just as much in the 70′s (probably more), but it was the science that made the impact, not the white light visualizations.  The biological research that informs physicians is imperfect, and many still die, but this does not mean we are failing.  Science is recursive, unlike any other system of knowledge; it challenges itself, by its nature, to prove existing ideas wrong.  Still, not all cancers show this pattern, but the science that biologists use to discover details of the natural world inform physicians, who employ this knowledge to save lives.  And many lives have been saved.

But this hasn’t stopped many people from thinking otherwise.  Stanley Tucci recently lost his wife to a form of cancer, and in a Fresh Air interview proclaimed that she did not die of cancer, but of the “conventional” treatments for cancer (the discussion of cancer begins at 18:35,  and Tucci’s comments on alternative therapies begin at 19:30).  Tucci went on to say that he only found out about “alternative” (that is, not subjected to empirical test) therapies months before his wife’s death, and concluded that had he known of these alternatives earlier, his wife would still be alive.  I love Tucci; in fact he is one of my favorite actors, and I’m sure he is horribly bereaved; but this is just irresponsible.

Similarly, Bill Maher—famous anti-vaccine and anti-medicine advocate—in April of 2008 blamed Senator Arlen Specter for having cancer, and for his cancer’s relapse. (I would link to the YouTube video where I watched this, but it has apparently been deleted by HBO, even though many other Real Time episode clips from the same month remain.  Hmm.)

I have watched Maher off and on for years. I agree with much of what he says, and I think he’s brave and smart.  But for some reason, when it comes to medicine, he has lost all rationality. Maybe it’s because he’s lived in California for so long.  Who knows?   Only in a world where infectious disease has—with a few notable exceptions—been completely obliterated by medical action that derives from basic biological science, would someone claim that the real problem is the vaccine, the solution.  And I could put many links to The Huffington Post (which I generally enjoy) with similarly inane assertions.  Maybe I’ll do so in a later entry (but you can see for yourself in their Living section on any given day).  And just look back 70 years, and consider the hundreds of thousands of children who died then of infections we now rarely see—infections we have conquered, and in some cases eradicated, with vaccines—and it is clear that Maher’s hyper-modern, myopic view is flatly false.

Microorganisms are living things, and they are merely trying to stay alive, just like us. It just so happens that they make their living by harming ours.  We are no different; we must kill life to live as well. Only the plants are spiritually clean on this one.  So, good nutrition will not save the world from this biological conflict; variation in resistance exists everywhere, and bacteria and viruses evolve, becoming more adept at overcoming our defenses.  Good nutrition alone will not prevent infection, and many will succumb without the enormous benefit of medicine.  It’s quite perplexing (and, increasingly infuriating) to watch Maher rant against religion as stupid in one breath, and in the next proclaim that good nutrition is the solution to illness, and therefore cancer therapies are bogus, and pregnant women should not get vaccines.

So I am not writing this with Maher’s intent.  I’m not here to defame religion.  I’m simply putting this link in my blog because it is honest, and it is a reminder of an important fact that both people with cancer and their loved ones need to remember:  Cancer is a material condition; it requires a material solution.

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