Harm Part 2

I wrote Harm a few months ago and I thought it was all I had to say on the subject of the impacts of viral sensations and celebs touting their woo woo medical beliefs. Ah, when will I ever learn that for me in CancerLand, the case, whatever case, is so rarely closed. Sigh.

A few months ago a work-related acquaintance asked me about some clinical trials and/or info about more aggressive treatments for her husband with stage 4 brain cancer. The place where he’d been treated, incidentally where I had been treated also, had sort of written him off—nothing more they could do, get affairs in order, etc. This woman was having trouble getting cooperation in handing over his medical records so she could send them to bigger, more experienced places (read: less small town/in the boonies places) so they could get more aggressive or experimental treatment. (I’d had similar problems getting them to hand over my images when I was still a patient with them—I’ve since had to transfer to another medical system due to insurance changes on my part). I did what I could, asked for some help on FB, Twitter.

When I ran into her some time later, her husband was doing great! As well as I can understand her, yes, her husband did visit another medical facility in a less Podunk place than our town, but he had also started some herbal supplement/woo woo/beat cancer with blueberries stuff. When she told me what it was (and I’ve since forgotten—some herbal thing) I went to the website she told me about it, and it was VERY woo woo. She also talked a bit about B17—which I Googled and saw immediately it is touted as alternative cancer treatment. I backed away.

Now, as I said in the Harm post, people can “do” cancer however they wish—I guess. I have trouble when it comes to the proselytizing about woo woo treatment. I shy away from all the crazy sexy cancer type websites touting some vitamin, whatever drink, herbal stuff, and assorted other, uh, crap, claiming to cure/prevent cancer. No, I’m not some big fan of Pharma’s prices, and sure I get it, there are some invented issues made just to market some drugs—but there are many drugs that exist, because, you know, THEY WORK. And conversely I’m not saying eat bacon and ice cream and stay on the couch 24/7; make healthy choices, duh, but recognize those things are not a guarantee of illness-free immortality.

It’s about balance, not embracing extremes, and about seeing the big picture. And most of all, not blaming cancer patients—which I think is a result, indirectly and directly—of some of the eat right/don’t smoke/exercise lecturing that goes on.  I wrote about that ages ago and still mean every word of Did You?

I encountered this acquaintance again a few days ago, and of course I was happy to hear that her husband is doing so great that he is planning to return to work. Quite the change, she crowed to me, from early this year when he was told he had 6 months at best. Yes, he’d gone and had treatment at a big city facility, but she is giving the B17 all the credit. She launched into a lecture about how doctors “never” talk about nutrition, are just drug-pushers, aren’t even taught more than some limited number of hours—out of years of schooling—about nutrition, vitamins, etc. She also began talking shit about the local cancer center—again, where I was treated as well—and their initial “6 months” pronouncement, how she does not trust the doctors, the medical industry and so on. She’d “read some stuff about it”.

I confess I lost my ability to smile and say how nice it is her husband is doing better. I just kept quiet as she continued chatting with our mutual client. This was a tough spot for me and I think I behaved poorly here.

Why is all this so hard for me? I, my own dumb self, have been often frustrated with the local medical system, which failed to correctly identify the big white area on my first ever mammogram as cancer, dismissing it as density (see What Is My Psychological Damage for the whole story there). I was correctly diagnosed 5 weeks later at another local hospital system (near my home, whereas the mistake was made, and I was treated at, the cancer center near my work, an hour away from home). I have lingering doubts about the general capabilities in diagnostics in the area—and I’m not the only one, and it isn’t just a cancer issue—according to horror stories told to me by my clients. But on the other hand, my treatment was exceptional—damn near cutting edge in that my oncologist was forward thinking enough to get me into chemo before surgery, which apparently is “new”—ugh, rolling my eyes, read Maybe Mayberry Ain’t So Bad for the whole story there.

I guess what I am saying here is that, yes indeed, the medical industry can use some improving. I get very annoyed when I read some blog posts on KevinMD where some professionals get very defensive about labeling us patients vs customers, the “satisfaction” metrics, and some interesting discussion on doctors firing patients who make poor diet and exercise choices, the responsibilities in that whole issue. But just because I disagree with what I read there does not mean I’m ready to dismiss the whole profession as stupid and evil, and start treating major illnesses with vitamins and herbs and nutrition, rather than medicine. Sure I would think twice about getting diagnosed around here, and I know how to advocate for myself better now. I get very upset when the discussions begin about patient satisfaction measurements being dismissed because some asshole patient gave a low rating because they did not get some stupid amenity like food or TV. Stuff like that is so stupid it should not be discussed, and patients should be told such complaints will not be considered. But, yeah, I’m a patient and I am paying for something (yes, my insurance paid, which I and my employer had paid into), so I am also a customer and my metric of satisfaction is getting a correct diagnosis. Of course learning cancer did not make me “happy” or “satisfied”, but being able to trust a professional to find a potentially deadly disease in me so it can be treated—well, that is a kind of satisfaction. I sure as hell would be unsatisfied if I died due to negligence, so to speak.

But speaking up, that is the point—to make it better, to improve. Not just chuck it all and swallow vitamins and kale. And then make videos or write books, as so many hucksters have done, touting alternative methods. People have these “beliefs” about cancer that seem unrelated to evidence (again, in Harm I discuss my queasiness about “beliefs”). If it works for some, as this acquaintance of mine so clearly believes, OK, fine. But what happens now, every time she opens her mouth to anyone who will listen? What is the harm to society in general when these conversations occur? People love anecdotes more than stats; numbers are boring, drama is better. And people love the underdog success story. People love to point to Stallone writing his own movie and getting successful; or the actress discovered in a restaurant—those one-time incidents—and believe it can happen to anyone, never mind the hundreds of others who write their own films or hang around hot spots hoping to get the big break, and they never do. It is the same in cancer. How many people shun the medical industry and die, while the one person who claims to have meditated and kaled the tumor away gets help up as the example, THE WAY?

I think again, grimly, about the “think positive” culture. Here’s an anecdote for all—an awful one. The woman who started the under 50 with cancer support group where I was treated was a sort of friend of mine—before either of us got cancer. She was a top volunteer for the non-profit I worked for in the latter half of the previous decade. She got two kinds of gynecological cancer, two separate cancers—not a spread, to be clear. She was treated and was a couple years out when I got diagnosed. She did the chemo etc. thing, but was into some of the woo too–integrative medicine. She gave me some acupressure bracelets to take the edge off of the nausea that first awful month of the Red Devil. She suggested some mushrooms from the health store which help prevent recurrence. She sat with me during that first infusion, suggesting I visualize the medicine running through my body, fighting the cancer. I never did that, I slept all the time. She was the poster child for the notion that keeping a positive attitude helps “beat” cancer. She moved away toward the end of my time in treatment, but she kept in touch with us girls in the support group. Not long after I completed treatment, she had a metastatic recurrence of one of the cancers; I can’t remember which. She died on a Thanksgiving Day. Moral of the story? The think positive person died, she could not rah-rah-fight cancer away. The grumpy Curmudgeon who won’t or can’t visualize, who won’t be rah-rah positive, who takes only a few vitamins at the behest of a friend/client, well, I’m still here for now. Not that I’m unhappy to have “survived” but this anecdote fills me with bitterness, even now, years later, as I write this. Yes, it an anecdote that supports my “belief” but it fucking sucks and I hate it.

Of course I do not wish my current acquaintance’s husband death just to prove the woo woo does not work. And I’m not going to get into some argument about how maybe it was some of the medical treatment working—I’m not equipped to do that. I will try to be better at being glad for them, and to just not impose my idea of how to do cancer on others.

Perhaps I should argue with her, but what would be the use? I doubt I will change her mind. On this blog and on my Facebook page I can say hey, do cancer your way, I don’t agree, and I can control the amount of woo appearing on my page, and I can just NOT go to the woo pages and sites. But how do I navigate in person disagreements? As I’ve mentioned before, my aunt who was diagnosed a couple months before me is a Pink, rah-rah, save the ta-tas supporter. We just never discuss cancer. I cannot. I would lose my shit. So I guess the thing to do is to smile, express happiness that all is going well, then leave the room.

But I am uneasy this week. Uneasy. I hope to improve how I handle this, because it isn’t going away anytime soon.

Harm

“What’s the harm?” “First, do no harm.” “Do what you will, so long as it harms none”. I realize the surrounding connotations of these phrases–that these phrases, well, the last 2, are discussed in long essays (like about how oncologists have to cause some harm to treat cancer, for example). I don’t take it lightly, but I don’t want to get into it either. All I want to discuss here is the surface idea of the phrases–the notion that we are “free” to do whatever we please, so long as we don’t harm others. My thought lately is, some things do more harm than is recognized. So much for our “freedom” to do whatever we want, the notion that we are all entitled to our opinions and the murky area of sharing (foisting them on?) others.

During and right after treatment, when I was in my white-hot-angry-at-perky-cancer-culture era, I kicked against the expectations of cancer patient behavior/views. When I started blogging, I found others who said we are all free to “do” cancer as we want. Well, I could get on board with that! But these days I see that idea as, well…an ideal that is not often realized. Continue reading “Harm”