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.