Tag: cancer

Frame of Reference—The Disease Olympics Part 1

I first remember hearing the phase “the Cancer/Disease Olympics” during that fracas involving Pancreatic Cancer Action’s “I wish I had breast cancer” PSA back in 2014. I wrote “Want Attention? Just Say Breast Cancer” in response; and included in that blog post is a link that will take you to the video, and more commentary (it reflects my own views; I urge you to research other views your own self). I remember that whole episode got really nasty; I even heard a few people sent death wishes/threats to the pancreatic patient who uttered the line. She did die not long after that, if I remember correctly. Just proves how quickly things get out of hand  especially when a subject raises passions.

And what subject is that? Disease/Cancer comparison and competition. I think the “official” definition of Disease Olympics is the competition for limited funding between advocates for diseases: to “win” increased funding for one disease means funding for another decreases. But I think in a more general way Disease Olympics can refer to the game of “who has it worse”, and research funding is just a piece, a large piece, of that picture. I’ve been sitting on a post about all this since early 2013. Two things happened back then: 1) A breast cancer patient I followed on one social media outlet wrote something so upsetting about being competitive with her cancer that I took a hard look at myself and have been doing so ever since, and 2) Journeying Beyond Breast Cancer wrote a wonderful piece asking Is There a Hierarchy Among Cancer Survivors  (read it now, especially the comments, which are the crux of the discussion!). I kept writing about these incidents off and on, and it has now grown to three parts—this is the first part. I’ve been sitting on the post not only because it grew so unwieldy, but also because it is an ugly subject and I have some ugly confessions to make. I want to be completely honest, and as awful as this topic is, avoiding it won’t make it better—not saying conversation about it will either, but, I’m trying anyway.

The more I wrote about it, the more I realized that the comparisons are present even when those doing the comparing don’t think they are doing it, or rather they don’t know or understanding exactly the things they are comparing. For me the worst compare/compete stories are within the breast cancer community. That’s the third part. Slightly less awful are the comparisons/competitions between cancers—as the Pancreatic Cancer Action story shows—and between cancer and other diseases. That’s part two, and it will not be easy to write or read either. But before I started going into all those areas I had to write about a realization I had while considering comparison from as many angles as I could.

I cannot condone the competitive aspect at all. But when it comes to comparison, I do pause. Comparison can be useful, if careful. The most obvious example, at least in my experience, is the fact I tended to seek out other cancer patients with the most similarities—as in those HER2+, since I seemed to be an oddball in an estrogen-based cancer world there for a while. That was the biggest issue for me. Other aspects, like finding others at Stage 3, others who had a lumpectomy, not a single or double mastectomy, others who did not reconstruct, others NOT BRCA positive, and of course, others in my age range—all those things I sought out as well. All those aspects have become less and less important as I’ve progressed away from my diagnosis date. Views and attitudes about positivity and the bullshit around cancer have become waaaaay more important to me. It was just in that first rush of dealing with treatment, of trying to grasp what the hell was going on, that I desired to find people with the most similarities. I still have a habit even now of paying more attention to such silly aspects; it is not that I do not care about, say, Triple Negative cancer, it is more like—cancer is so damn complex, it’s hard to wrap my head around it all sometimes. The bottom line however, is to not let those details cloud the bigger picture, the commonality we share.

That may sound a little hippy-dippy, airy-fairy coming from a Curmudgeon, but it is true!

I will go so far as to say my cancer experience has helped me in my current line of work. As I’ve mentioned here on this blog and other places, I am a pet sitter, but that job turned into caring for a primary client with Chronic Lyme. So I’ve wandered into so home health care tasks in my job. Things like hooking up IVs, administering medicines, keeping a strict schedule (know that old nugget about nurses waking you up in the hospital to give you meds? well, I understand the need to adhere to a schedule no matter what now), paying close attention to dietary restrictions—heck, even cooking—I do all these things now. And yes, they are easier to do BECAUSE I went through the cancer experience. In short, I now appreciate the damn infusion machines that I hated so during chemo. Having to set the drip rate on an IV manually, using my eyes and the metronome app, well, it got tricky for an impatient brat like me. Argh, medicines requiring a slow drip rate are THE WORST!

It wasn’t that I relied on my cancer experience to say, “Oh, I’ve experienced that, no big deal!” That would be awfully dismissive. No, it was more like, “Yeah, that happened to me, it sucked, now how can I apply my gained knowledge here?” Having the frame of reference of major illness and the operations of medical industries has helped: I was surprised and pleased to find the infectious disease center provided materials similar to what I was given at the start of chemo. Was I troubled by just being in a medical facility, by having these upsetting memories? Sure, but at the same time, I was entering into the role of caretaker in another frightening illness situation. Having that frame of reference, experiences to extrapolate from, it was only helpful. Being able to say, “oh yeah this is like that was for me,” made me more efficient, and not too rattled.

It is so NOT about one upmanship.

So is there an undercurrent of one upmanship, or maybe one downmanship (since it’s not about who is better, but who has it worse, right?) in diseases and patients? If so, can it be resolved? No, but I still think it should be discussed.

Has using comparisons ever been helpful for you, to help you understand parts of your illness?

Word

Since I’ve often spoken of my love of certain kinds of music, including hip hop, it would be understandable if you saw the title of this post and thought I meant it in some lame kind of “word to you mother” way (see post about Vanilla Ice).

But no, I do not. Continue reading “Word”

This Is So NOT My Fight Song

“Rap music is really good when you’re traumatized” –Kim Gordon, formerly of Sonic Youth, author of “Girl In A Band”

I begin this post with an apology of sorts. I am not trying to make fun of or otherwise criticize anyone’s music preferences. I’ve been on the receiving end of that and know what it is like. But at the same time, I care very passionately about music, as a simple poke around this blog will show. I mean, hello, I got the Red Hot Chili Peppers’ band logo as a tattoo instead of nipple reconstruction (see page)! So, my preferences are going to come out. And so will my dislikes—which is putting it mildly.

Continue reading “This Is So NOT My Fight Song”

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”

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.

What’s Good for the Cat Is Good for the Cancer Curmudgeon

I was slow to the social media thing in my cancer career. No, scratch that, I was slow to the social media/internet in general. I mean, in the 2000’s I used the internet for work, but nothing else. I got my first laptop really late–2005–and just so I could work while away from the office. So it was not until I completed treatment and quit my 9 to 5 that I really USED the internet the way it was intended–to watch cat videos! To share silly memes! Oh yeah, and to find others who shared my disgust with breast-cancer-as-pink-party.  I began my cancer blog late 2012, around the same time Grumpy Cat started to get popular. So I’ve always felt a little kinship with the cute little critter–partly because I began living on the internet so much and she was everywhere, and most importantly those “I had fun once it was awful”-style memes featuring her.

Now, before I continue, I should say I love Grumpy Cat and understand she is not really grumpy–the “look” on her face is a result of dwarfism. But I love the hoopla that surrounds her–messages of holiday joy interrupted with “NO”, or the aforementioned “I did xyz once, it was awful” line that pops up a lot. I love the attitude, her face–the whole grumpy she-bang.

Well, of course I do. I’m a grumpy cancer patient! Continue reading “What’s Good for the Cat Is Good for the Cancer Curmudgeon”

SELL!

I am re-posting what I wrote a year and a day ago. Why? Because the issues are boiling up again. (The relentless repetition in CancerLand Culture deserves a post of its own some day, I’m beginning to view relentless repetition as a weapon.) In my view, and I think others share this view, medical establishments are misleading the public with their ads focusing on patients fighting cancer, and winning. Rather than leading a change in the discourse, a change focusing on science and facts, some large “name”, as well as some small-town no-name, facilities have chosen to perpetuate the dominant, persistent, same story-different day narrative of cancer as this opportunity for personal growth, so patients can rise to the challenge and beat cancer–along with a little help from staggeringly expensive treatments provided by the facility in question, naturally.

Some would say it’s just as bad when a fundraising organization does this, since they are often a resource for medical facts for the newly diagnosed. I don’t completely agree, but I still think the images they sell with the narrative are repugnant. But it certainly is not new, it keeps popping up, as I say in this old post. Lots of folks were upset with the Stage 4 martial arts patient in the Komen ad last year; I just thought it was BUSINESS as usual.

I don’t know what the answer is-yes there needs to be funding for research and so far the selling of positive, upbeat, winner patients (and boobies–don’t forget ta-tas and immaturity as a selling tool) has worked. To me there is no use in denying this, in fact, it needs to be recognized and discussed. I am simultaneously repulsed and grateful (see Burden of Gratitude). Cancer patients are commodities. Some others in the community likely think: “So what? As long as the money pours in to do research so maybe I can survive, who cares?” And maybe they have a point. But it comes at a cost (again, see Burden of Gratitude).

No I don’t have a better idea–that is not my field of expertise, so it is not very fair to expect a solution from me. I’m just complaining as usual. Wondering what you all think of all this. All I know is, there is something very unsettling, very creepy about it all. And certainly a whiff of dishonestly, of deception.

Anyway, am I a Cancer Patient or Blender? What are you?

A Strange Evolution

Sigh I am so tired of the endless Dumb Shit Said To Cancer Patients (DSSTCP) articles–yet here I am writing on the topic myself. Again.

My views and feelings on many topics in CancerLand have evolved slowly over the years since I began this blog. Most changes have been subtle I think, so subtle that maybe only I know the tiny differences. But I think my evolution on the topic of DSSTCP is noticeable.

When I first began interacting a bit on the interwebs with other breast cancer patients, I thought it was great that so many were writing “don’t say that, say this” types of books and pieces. I especially enjoyed the blog posts listing snappy comebacks some cancer patients thought up. You know, stuff like, if someone advised a patient to view cancer as a gift, patients would say “I want to return it/get a refund”, things of that ilk. I even went so far as to develop a list of DSSTCP with potential snappy comebacks, hoping to build a resource of those as a page on this blog. But I think I met some patients who were writing a book similar to that, so I abandoned it (like so many posts I start).

Lately, there seems to be a glut of what not to say, say this instead type of posts on my FB feed. Now, while some of the DSSTCP still greatly piss me off, I am at a point where I don’t really feel like reacting much if I hear any. I’m just not at the white hot angry stage I was when I first completed treatment. I’m no longer stuck in outrage mode. But for some dumb reason, I still clicked on some of these recent posts.

And I think I’ve had an epiphany of sorts. Continue reading “A Strange Evolution”

Not Full Circle Yet

Maybe there is a backlash to the backlash in cancer culture. I’ve mentioned it a few times in assorted posts on this blog, how those of us criticizing all things Pink and rah rah are finally being “heard”, at least in CancerLand, and I think there is a push back or defensiveness resulting from this. (See here)

I am not a breast cancer historian; if I were not so busy/lazy, I’d re-read the sections in Gayle Sulik’s “Pink Ribbon Blues” chronicling the rise of the Ribbon and the adoption of warrior, I’m-a-survivor-kicking-cancer-ass slogans, to understand when they began to permeate our culture. Was it the early 90s, maybe? I have no idea when the criticism of this culture began—I only became aware of it when I moved to CancerLand. One of the first things I managed to read was Barbara Ehrenreich’s “Welcome to Cancerland” essay as it appeared in “Harper’s Magazine”. Re-reading it today as I write this, I’m reminded the roots of the women’s health/breast cancer awareness campaigns had a gritty, less pretty start. There were demands about the environment, demands to be included in medical decision-making. Somehow and somewhere along the way it go co-opted. Yes, by Komen primarily, but other groups, and more importantly, millions of patients, went along with it. And then our society became all about fight/win/be positive when it came to illnesses and many other issues.

So when did the backlash begin? Well, Ehrenreich’s essay appeared in the November 2001 issue, so at least as early as 2001 breast cancer patients were uneasy with the “tyranny of positivity”. I’m sure there are earlier examples—but the fact that I don’t know about them, that I only learned about others expressing how I felt when I went looking for them, is kind of my point! The pink/rah rah/think positive to beat cancer was, during my time in treatment, and is still today, THE dominant cancer experience narrative. Continue reading “Not Full Circle Yet”

Medical Obligations

I’ve been giving much thought to all the accumulated knowledge cancer patients get once we’ve lived in CancerLand a little while. Staying active in social media especially builds that knowledge as we interact with other patients in various stages of treatment. I’m not talking about strictly scientific, medical knowledge; I’m talking about cultural knowledge as well. Not only are patients filled with this knowledge, but so too are medical facilities and fundraising and support organizations.

Or are they? Continue reading “Medical Obligations”