Respectful Insolence

A tragic breast cancer tale misused

Having just discussed yesterday the demonization of chemotherapy and how bad its side effects can be, I was thinking last night that it was time to move on, that I had gotten stuck in rut writing too many cancer-related posts in a row. Then, as so often happens, I came across something that so irritated me that I realized that I had to take one more dip into the same well. Before I do that, let’s go back a couple of weeks to a man named Chris Wark. You remember Chris Wark, don’t you? He’s the man responsible for the Chris Beat Cancer website. In that website, Wark claims to have beaten stage III colon cancer with a vegan diet after refusing adjuvant chemotherapy when in reality it was the surgery that cured him. Contrary to Wark’s claims, surgery alone can cure stage III cancer. All he did by refusing was to decrease his chance of a cure; he didn’t eliminate it, not by a long shot. At the time, I pointed out that Wark’s testimonial almost certainly represents the most common form of alternative cancer cure testimonial, namely testimonials in which conventional therapy (usually surgery) actually cured the patient but the credit is given to whatever woo the patient chose to take.

A corollary of the “2% gambit,” in which believers in alternative cancer cures misrepresent chemotherapy as contributing only 2% to cancer survival is a claim frequently made by the same people that chemotherapy kills more people than it saves. This claim derives from a simple, often willful, misinterpretation of the cachexia that leaves patients with advanced cancer looking so gaunt as being due to the chemotherapy rather than to the progression of the cancer. While it’s true that chemotherapy is frequently responsible for loss of hair and, if the chemotherapy includes taxanes, discoloration of the nails, it is not responsible for the increasing cachexia patients suffer as their cancer progresses. What so irritated me is the story that Wark used to try to make this fallacious point.

Those of you who are on Facebook might have seen a link that’s been going around over the last couple of weeks or so. Basically, it’s the website of a man named Angelo Merendino, whose wife died of breast cancer. To honor her struggle, he documented it all the way from her diagnosis to her ultimate death. He calls his exhibition and book The Battle We Didn’t Choose: My Wife’s Fight With Breast Cancer. Just the photos included on the website and blog are very powerful indeed. In stark black and white, the photos show Jennifer Merendino’s battle from its beginning to its end, including photos of her losing her hair and shaving her head. Her physical deterioration is documented, and it’s heart wrenching to observe. Click on each photo in order, I challenge you not to tear up a bit when the last three photos, which begin with a photo of Jennifer receiving Communion.

Equally heart wrenching is the story:

Five months later Jen was diagnosed with breast cancer. I remember the exact moment…Jen’s voice and the numb feeling that enveloped me. That feeling has never left. I’ll also never forget how we looked into each other’s eyes and held each other’s hands. “We are together, we’ll be ok.”

With each challenge we grew closer. Words became less important. One night Jen had just been admitted to the hospital, her pain was out of control. She grabbed my arm, her eyes watering, “You have to look in my eyes, that’s the only way I can handle this pain.” We loved each other with every bit of our souls.

Jen taught me to love, to listen, to give and to believe in others and myself. I’ve never been as happy as I was during this time.

Throughout our battle we were fortunate to have a strong support group but we still struggled to get people to understand our day-to-day life and the difficulties we faced. Jen was in chronic pain from the side effects of nearly 4 years of treatment and medications. At 39 Jen began to use a walker and was exhausted from being constantly aware of every bump and bruise. Hospital stays of 10-plus days were not uncommon. Frequent doctor visits led to battles with insurance companies. Fear, anxiety and worries were constant.

Sadly, most people do not want to hear these realities and at certain points we felt our support fading away. Other cancer survivors share this loss. People assume that treatment makes you better, that things become OK, that life goes back to “normal.” However, there is no normal in cancer-land. Cancer survivors have to define a new sense of normal, often daily. And how can others understand what we had to live with everyday?

My photographs show this daily life. They humanize the face of cancer, on the face of my wife. They show the challenge, difficulty, fear, sadness and loneliness that we faced, that Jennifer faced, as she battled this disease. Most important of all, they show our Love. These photographs do not define us, but they are us.

Cancer is in the news daily, and maybe, through these photographs, the next time a cancer patient is asked how he or she is doing, along with listening, the answer will be met with more knowledge, empathy, deeper understanding, sincere caring and heartfelt concern.

What I (and most people who read it) get out of a story like this is a profound appreciation for human love and endurance. Angelo Merendino demonstrated intense love and loyalty, while his wife battled her disease with dignity and humanity. Leave it to Chris Wark to draw exactly the wrong conclusions from this inspiring story:

Third, this photo essay has been posted on many sites, but none have addressed the elephant in the room.

Cancer did not destroy this beautiful women.

Conventional cancer treatment did.

Jennifer’s story mirrors many diagnosed with cancer. Patients are typically rushed into treatment with no idea how destructive and ineffective it is. And how much suffering is involved. They are not told that the body can heal, only that they have to “battle and fight cancer”, a warfare narrative created to help people accept that they must endure brutal, conventional cut-poison-burn treatments. And like warfare, it often ends tragically.

I hear and read stories like this one daily, and I’ve thought about posting a collection of cautionary tales for some time, but I wasn’t sure how. I think this post is an appropriate forum for that.

I’m looking forward to reading your thoughts and comments. If you would like to share your experience watching a loved one suffer and die as a result of cancer treatment please feel free to do so. I don’t like dwelling on negative things, but we can learn from the experiences of others, whether good or bad, and people need to know the truth about conventional cancer treatments, and that they have other options. That’s why this site exists, to empower you with life-saving information that can help you heal cancer and/or avoid cancer in the first place. If you have lost a loved one to cancer, that story is valuable and important. It could make all the difference for someone who is at a fork in the road. Please take this opportunity to share it with those who might find themselves here.

While there is a germ of a reasonable point at the very beginning of Wark’s comments, namely the part about how the metaphor of war against cancer can at times be counterproductive, Wark is, quite simply, so wrong he’s not even wrong when he tries to claim that conventional therapy killed Jennifer Merendino. Note that Angelo states right on the front page of his website that his wife died of metastatic breast cancer; i.e., stage IV, incurable disease. She was also diagnosed in early 2008 and didn’t die until December 2011, a nearly four year battle that began with a double mastectomy, chemotherapy, radiation, and reconstructive surgery, all within the first year of their marriage. More details can be found in this story (and more photos here), which leds me to believe that she had a fairly advanced, but not yet metastatic, cancer at the time of diagnosis.

Near the end, she developed brain metastases and required whole brain radiation to control them, which implies to me that she probably had an aggressive subtype known as triple negative breast cancer, which has more propensity to metastasize to the brain than the more common estrogen-sensitive breast cancer. She also had metastases elsewhere, including bone and liver. Ironically, Jennifer wanted to use diet to help fight her cancer, but did some research and correctly concluded that, although diet can decrease the risk of developing cancer, once you have cancer, the horse is out of the barn, so to speak. It’s too bad that Chris Wark hasn’t learned that lesson and sadder still that he can’t understand that his case is not comparable to that of Jennifer Merendino. Worse, he can’t understand that, had he been less lucky, he could easily—and potentially unnecessarily, given his refusal of adjuvant chemotherapy—have shared Jennifer Merendino’s fate. Indeed, he clearly made it more likely that he could share Jennifer Merendino’s fate by refusing chemotherapy. That he didn’t was mainly luck.

Wark, of course, is seizing on a well-publicized anecdote in which the woman with breast cancer died, despite receiving the best that science-based medicine has to offer. Sadly, it happens. We can’t cure 100% of cancers, and the more advanced the cancer at the time of diagnosis, the more likely it is to recur and end up causing the death of the patient. Wark latches on to the story of Jennifer Merendino because he can cynically use it to attack science-based cancer therapy and demonize chemotherapy as killing more people than it cures even though chemotherapy was not what killed Jennifer Merendino. Breast cancer was. No cancer treatment is 100% successful, and, despite our best efforts, patients sometimes die.

As I said at the beginning of this post, Chris Wark really irritated me this time. To assuage that irritation, let me just counter his anecdote with another famous example of a breast cancer patient documenting her treatment, a photographer named Kerry Mansfield. She was diagnosed with breast cancer at age 31, underwent a mastectomy and reconstruction followed by chemotherapy, and documented it in photographs much the way that Angelo Merendino documented his wife Jennifer’s treatment. She published these photographs in a book called Aftermath. In the photo series, we see a young woman progress from having a mastectomy to undergoing chemotherapy and losing her hair. The difference is that we see her recover, see her hair grow back, see the results of her recontruction. [Note: All the pictures feature Mansfield naked from the waist up. I don’t consider them NSFW because the are clearly meant as art and show the aftermath of surgery and chemotherapy. Indeed, I even use her photo series when I give talks about breast cancer to non-clinicians. However, not everyone will agree with me on this.] These images are just as powerful as those of Jennifer Merendino, but the end result is different, and the story not tragic but triumphant.

Somehow, I doubt that Chris Wark will be commenting on such a message, as it goes against everything he stands for.

Comments

  1. #1 StrangerInAStrangeLand
    October 31, 2013

    “No cancer treatment is 100% successful, and, despite our best efforts, patients sometimes die.”

    Yes, that is the big disadvantage of SBM / EBM, it is not perfect. If one of the proponents of magic medicine dies, then it is always because he/she did something wrong, did not believe in the healing strong enough or was killed by the evil “conventional” medicine used before or after the miracle treatment. It is never the magic that doesn´t work.

  2. #2 weirdnoise
    October 31, 2013

    Well, yes; to paraphrase an observation sometimes made with respect to politics, “alternative” medicine can never fail, it can only be failed.

  3. #3 Lawrence
    October 31, 2013

    @Weird – that’s a very good point….the “alternative” treatments are always “effective” but only if followed to the letter (and any failures are always the fault of the “victim” not performing each and every step precisely).

    We see this on display with Burzynski patients too – whenever the treatment appears successful, it is because of the treatment, but when the patient dies, it is their fault for not doing “A,B,C, etc.”

  4. #4 Bol
    October 31, 2013

    “patients sometimes die”.

    Gosh, that’s the understatement of the year, isn’t it?

  5. #5 AntipodeanChic
    October 31, 2013

    I have to say I agree with comments #1 through #3.
    I will add this though – I can see how people (esp. quacks) co-opting tragic stories in such a callous manner would piss an Oncologist off.
    I have had a relative pass away from breast cancer, I also have a family friend who has been in remission for +15 years. Even the way Fox news conflated the pain from cancer with the side-effects of chemotherapy in their article about Jennifer Merendino annoys me, as it is all too typical of the common distortions in the media about cancer & its treatment. Do people imagine that the cancer itself might not hurt?!?

  6. #6 herr doktor bimler
    October 31, 2013

    Do people imagine that the cancer itself might not hurt?!?

    The Frau Doktorin does a lot of volunteer work in the local hospice. Part of the philosophy is “We won’t tell you how much pain you’re feeling — it’s up to you to decide how much morphine you need.”

  7. #7 Lina
    October 31, 2013

    If cancer isn’t a nasty player and it’s really only the treatment that stinks, why on earth is Chris so proud of himself for “beating” it?

  8. #8 Dangerous Bacon
    October 31, 2013

    It’s pure ignorance (much of it willful) that leads alties to believe that detrimental signs and symptoms in cancer patients are entirely due to their treatment and not to the cancer itself.

    There is seldom to never any acknowledgement that these same treatments are often effective in preventing or ameliorating severe pain, intestinal and bile duct blockages and other deleterious effects of growing cancer.

    (the ignorance also encompasses excusing the development of alarming symptoms in people pursuing alt med, on the basis that “it’s the toxins being flushed out” and similar crap.

  9. #9 Sastra
    October 31, 2013

    As I said at the beginning of this post, Chris Wark really irritated me this time.

    For good reason — and you dealt with his misinformation by putting out better information. It’s beyond irritating.

    By strange coincidence, however, though I came across something just the other day which makes me feel quite sorry for Chris… as one human being for another.

    (Caution: link contains some pretty disturbing stuff …)

  10. #10 Calli Arcale
    October 31, 2013

    FYI: marking something “NSFW” isn’t to say “I think this is naughty”. It’s to say “I know some of you are at work and workplaces may have very black-and-white policies about viewing pictures of nudity, so just so you know, this might possibly go against your workplace’s policy”. “Possibly NSFW” is what I’d put. Remember, that’s not putting a value judgement on the pictures — it’s putting a value judgement on inane Internet policies.

  11. #11 rork
    October 31, 2013

    “I’m looking forward to reading your thoughts and comments. ”
    OK. Chris Wark, you’re a lying crooked weenie. Almost all first-line treatments for common cancers have been tested in big clinical trials. If one treatment has people dead quicker than another (or less treatment) we notice. If the folks live longer, we notice. Such thoughts are exclusively for people who care about reality though.

    PS: Our author might discuss some treatments (maybe anastrazole) that for really early-stage breast cancers (that are ER+) in maybe the oldest women, might only win you a few percentage points less relapse, and have some mostly-modest side-effects.
    That’s just the way it is sometimes. Buy the insurance or don’t, it’s your call, but make sure you understand the gambling game involved in serious detail.

  12. #12 KeithB
    October 31, 2013

    I am recovering from stage IV colorectal cancer, and have been cancer free for a bit over a year now. It had spread to my liver, but my oncologist said that if it had spread to my lungs “its all over”.

    I prefer that kind of candor to “just use my diet and everything will be OK!”.

  13. #13 Denice Walter
    October 31, 2013

    OT- but are alt media hucksters attempting to smear legitimate venues of higher education in science ever TRULY OT @ RI?

    Mikey, in his infinite lack of wisdom, informs us that a university ” sells deadly toxic waste to the public on its surplus website”.

    It seems that the MIndless One, ever cargo-culting his way towards advanced exercises in scientific mime, acquired a used “polargraphic analyzer”
    for 100 USD: upon opening the package, he discovered – much to his horror- that it contained liquid mercury-ominously swirling about, this deadly substance could be used by terrorists to poison water supplies.
    Oh the humanity!
    We will all be saved by the Whistleblower!

    I wonder if he chose that u because its name sounds similar to the places where our most esteemed and gracious host had studied and is now employed?

  14. #14 Kiwi girl
    October 31, 2013

    #1, #2, and #3: which is why alt “treatments” are like cargo cult religions. The harvest failed because the sacrifice wasn’t pure enough, winter lasted too long because people didn’t really believe in the power of the god, etc. I see no difference in the two types of magical thinking.

  15. #15 Lina
    October 31, 2013

    @rork

    Good call posting your comment here–my comment on his site never made it past moderation. I guess when he saiid, “I’m looking forward to reading your thoughts and comments,” he really did just mean “I” and definitely not his readership.

    It wasn’t even rude and I used no profanity–I just didn’t agree with him, which it seems is the kiss of death. So much for the altie claim of just wanting to see all sides.

  16. #16 Kultakutri
    October 31, 2013

    Denice Walter @ 13: That mojito all over me and the laptop is your fault. Because, getting a polarograph and pearl clutching about mercury, that’s the joke of the day. Gawd knows I needed that laugh.

  17. #17 Denice Walter
    October 31, 2013

    @ Kultakutri:

    Lord knows what he’s going to do with it either. He’s the guy who used a microscope to look at chicken.

    In other news, thermometers contain a toxic hazard.

  18. #18 Krebiozen
    October 31, 2013

    Cancer did not destroy this beautiful women.
    Conventional cancer treatment did.

    Such a horrible lie. I really wonder seriously if lies like this that can have life-threatening consequences if someone believes them, should be punishable.

  19. #19 sophia8
    October 31, 2013

    Denice @13: I actually had a spam email the other day from a Chinese company offering to sell me liquid mercury in any quantities I wanted.
    I have no idea why they thought I might be interested, but if I were a terrorist thinking of poisoning water supplies, I now know where to go.

  20. #21 Krebiozen
    October 31, 2013

    Groan. Link survives at very beginning of that mess. Sorry.

  21. #22 KeithB
    October 31, 2013

    Lina:
    Did you have several links?
    I beleive that moves you to moderation.

  22. #23 Lina
    October 31, 2013

    @ KeithB

    No, I didn’t have any links, it went into moderation when I posted it and Chris apparently didn’t approve it, since it neither appeared nor remained with the “waiting for moderation” message. I can’t help but notice, though, that there don’t seem to be any actual dissenting opinions in the comments on Chris Beats Cancer, so I can’t say I’m that surprised.

  23. #24 Denice Walter
    October 31, 2013

    @ sophia8:

    So far no Chinese companies have attempted to sell me mercury- just ‘authentic’ Burberry scarves and herbal remedies from ‘99% internationally certified factories’.

  24. #25 Mephistopheles O'Brien
    October 31, 2013

    @Krebiozen – it stands to reason that coal fired power plants are very hot. They must have a lot of thermometers, which is where the mercury comes form.

  25. #26 Dorothy
    Oz--the other one
    October 31, 2013

    @Sastra

    The fool Wark doesn’t even understand basic mental illness. “To each his own” tossed off so cavalierly at the end. He can’t even distinguish between trash, garbage, hazardous waste, or know the difference between bad housekeeping and hoarding. He gives no details such as what the situation was with the utilities, shutoffs, the woman’s age. Nor does he seem to care where she “moved” to. It’s Mr. Wark who is offensive, not the condition of the house. Why does he post this? To buck up an insurance claim, perhaps? He has zero compassion that the woman was actually living in such a house; he only goes on that such a mess could lead to ill health and hints at vague correlations since he mentions at the outset that his is “Chris who beat cancer”.

    Disgusting–him more than the house.

  26. #27 Khani
    October 31, 2013

    #20 Kreb

    And what *is* the proper disposal method for a coal-fired power plant?

  27. #28 The Very Reverend Battleaxe of Knowledge
    October 31, 2013

    @ Krebiozen #20:

    Look under Nitrogen Triiodide.

  28. #29 AntipodeanChic
    November 1, 2013

    @Dorothy – I just saw that nasty piece of video, & I have to say I agree.
    Whilst I can feel a degree of empathy with any landlord in such a situation; I found the guy’s ignorance (deliberate or otherwise) of hoarding & its implications for the mental state of the hoarder shocking.

    Granted, less shocking than the indifference shown to a woman who must have been extremely disturbed/bullied to leave* in order to have left so many personal belongings behind.

    As a landlord, I imagine one has the legal right to document damage done to their property, but to broadcast it on the internet (complete with identifying markers such as a view of the street & the house number) is surely another matter! Not being a U.S. citizen I cannot be sure of this. I am fairly certain, though, that it is grossly unethical to use such footage as a tangential opportunity to crow about the “superiority” of a “cancer beating diet/lifestyle plan” one has devised for sale…

    *Given the evidence of hoarding etc.

  29. #30 herr doktor bimler
    November 1, 2013

    And what *is* the proper disposal method for a coal-fired power plant?

    The “Redeveloping as a theme park” scheme did not work so well at Battersea.

  30. #31 Khani
    November 1, 2013

    Well, I *tried* the garbage disposal, but it just made this terrible rattling noise and gave up.

    And I have looked *everywhere* for it, but I just can’t find a recyclable label anywhere.

  31. #32 AntipodeanChic
    November 1, 2013

    Yeah, it was revolting…

  32. #33 Delurked Lurker
    In a Universe where time is an illusion....Lunchtime doubly so
    November 1, 2013

    Ah Orac…the gift that keeps giving.

    Another keeper :)

  33. #34 Krebiozen
    November 1, 2013

    M.O’B.,

    @Krebiozen – it stands to reason that coal fired power plants are very hot. They must have a lot of thermometers, which is where the mercury comes form.

    That’s about as plausible as my hypothesis, that the thermometers go into landfill sites which, millions of years later, will have turned into something like coal…

    I worked in a laboratory a while ago that had a huge jar of mercury locked up in the hazardous substances cabinet, the result of decades of dropped thermometers and no one having a clue how to dispose of it. Washing it down the sink with plenty of water, as we did radioactive iodine, didn’t quite seem appropriate.

  34. #35 Krebiozen
    November 1, 2013

    Khani,

    And what *is* the proper disposal method for a coal-fired power plant?

    Simple. Fly a number of giant inflatable pigs over it, photograph this and use it for an album cover for a highly popular band, thus turning it into a self-funding mecca for fans (who might even pay an entry fee), then encourage each of them to take a piece away as a memento by telling them this is strictly forbidden.

  35. #36 Krebiozen
    November 1, 2013

    The Very Reverend Battleaxe of Knowledge,

    Look under Nitrogen Triiodide.

    Thanks, I don’t remember where I got the other name from, but it’s clearly wrong. I thought for a while that it had been censored from Wikipedia. NT is so sensitive to touch, air currents (even alpha particles according to Wiki) that I think terrorists should be positively encouraged to use it.

  36. #37 SlipperyElm
    USA
    November 1, 2013

    Orac: I know that you want to check this out and deliver a counterblast: http://savannahnow.com/column/2013-10-31/commentary-fight-cancer-preventing-it#.UnPB6aPD9px

    Could not believe that this made it into a newspaper…

  37. #38 Calli Arcale
    November 1, 2013

    Be wary of the Law of Prescriptivist Retaliation, Bernard. “Misspell” does not contain a hyphen. ;-) That said, I think in this case “waste” might be less of a homophone error than a Freudian slip! :-D

  38. #39 Lisa
    January 24, 2014

    Jennifer did not have triple negative breast cancer. It was hormone positive.

  39. #40 Orac
    January 24, 2014

    One notes that I said she probably had triple negative breast cancer, an assessment that I based on its behavior. However, there is overlap between how hormone-positive breast cancer and triple negative breast cancer behave.

The site is currently under maintenance and will be back shortly. New comments have been disabled during this time, please check back soon.