Institutional Knowledge

I’ve been trying to put my finger on the word or phrase to describe the accumulation of common, shared knowledge that comes to a cancer patient participating in one or more social media platforms. I hesitate to use “institutional” when it comes to breast cancer, because it implies the normalcy, the rite-of-passage vibe that surrounds breast cancer, and I hate that—I do not want breast cancer to be thought of as “normal”, as just another step in a woman’s life. It should not be a step for anyone. But institutional knowledge seems the best fit.

Continue reading “Institutional Knowledge”

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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.

Beware Before I Compare

Truth be told, I have about 20-odd drafts of blog posts on my main laptop. I’ve even had to put the drafts into a few categories, such as “currently working on”, “fix in the future”, or the doomed “maybe never folder”.  In the current folder are 3 different drafts about cancer comparison competitions, or so-called Disease Olympics. I’ve been thinking about this topic for years, from different angles. You know, like when other illness/cause advocates use cancer to draw attention to their issue (hello women’s heart disease month), or when those with other kinds of cancer lash out about all the attention breast cancer gets, and of course, the hierarchy of who has it worse within breast cancer itself.  I swear I will finish them all someday, I hope. But I have a great little anecdote to share right now, because I doubt I’ll remember to put it in the appropriate post draft when I get around to it.  This little tale is a reminder to everyone, my own self especially, to stop wailing: “no other disease uses the battle metaphors; only in cancer are we expected to fight and win!” 

WRONG! (Play game show wrong buzzer sound in your head now.) Continue reading “Beware Before I Compare”

Broken Brain

Whoops it’s been about 2 months since I put a new blog post here. I have written one, just didn’t post–it isn’t quite good enough, and it’s just a little too personal to share, just yet.

Mostly I’ve just been tired, bored, unmotivated. I always see writing advice claiming one should write for some amount of time each day because good writing comes from practicing, working on it, not waiting for “inspiration”. Sadly, I have yet to learn this lesson. I kind of need to be fired up to get inspired and then I write in a giant spurt. I just can’t force myself to sit down and write something unless I really have something to say–it feels unproductive to me. So I don’t like to “waste” time at it; there are too many other things I could/should be doing. Yeah, I know it isn’t really a “waste” of time, I just can’t convince my brain of this.

I’ve still been posting on Facebook, a little, though for a few days there I just didn’t.  I didn’t feel like engaging in conversation with others on their pages. I was and still am jaded. I’m tired of having the same conversations over and over. I cannot join in repeating the “breast cancer is not a Pink party” mantra anymore. It’s not that I’ve become some convert to perky Pink thought, or tolerant of Pink. No, I’m just beyond it and my brain cannot wrap around the fact that the rest of culture has not caught up with me on that point. My view is: “of course cancer is not fun, we are not all warriors and losers, and everyone knows by now that cancer charities are not spending money wisely”. But of course, most people do NOT know these things. I just lack the patience to continue trying to educate people. I know that is wrong–that I’m being VERY judgey when I consider the general population to be so stupid, when I, my own self, did not know these things before I got cancer. I just didn’t think about it much, like most people, who don’t think about things not directly impacting them–because there are a million other things to worry about. And more importantly, I see the Pink/win/warrior tropes of cancer culture as not THE problem, but a symptom of a larger problem in culture, in general.

I posted on FB something recently about “leaving” a problem, some anon quote that was not intended to be about cancer, I just applied it to my current thoughts about cancer culture. Someone asked me how on earth it was possible for anyone to “leave” cancer. Once a person has it, that’s forever. But that wasn’t what I meant. I did not “leave” cancer, I just had to leave the social media part of it–or at least take two ginormous steps back from it. No, indeed, I did not leave cancer in April, on the contrary, I was very much down in it.

In the middle of May I had my annual mammogram, with the big dollop of paranoia that comes with the looming appointment. After all the events of 2014 (see Complicated Relationship with Hope and Scar Tissue for the details of how I got called back for MRI because of a suspicious area and how that threat of recurrence is shitty), somehow I was more calm in 2015. I guess I just thought, no use getting all wound up, it all turned out OK. But somehow this year, I got wound up. I figured since it all worked out the last 2 times, well, this time would be the sucker punch–much like my original DX in 2010 was the sucker punch.

It turned out OK and everything, ultrasound was approved right away and turned up only a cyst, and I am truly grateful. My brain just indulged in some overactive imagination of worst case scenarios. My brain just broke down for a little while.

So, no, I hadn’t left cancer–I just took a breath, for a minute that turned into 2 months.

So this meandering post is just to keep my toe in the waters, so to speak. I will indeed try to motivate my butt into finishing some of my posts, and get moving. I’ll figure out a way to get over my jaded state of mind, and get back to my curmudgeoning, it just might take on a different flavor. Who knows.