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”

“She Was A Human Being”

This post started in my head as a rant about the expectation that cancer patients be good role models to other cancer patients, or people with “lesser struggles”. You know, that inspiration-porn thing in which a disabled or ill person does something inspiring like run a race or whatever, so a slogan of the what’s-your-excuse type can be attached to it. As the rant churned around in my head it morphed into my usual kicking against all the little boxes cancer patients are put into: if not a role model, how about rebel? Except I don’t wanna be a rebel–rebels need rules as much as the role-model good cancer citizens do! I just wanna be! Why can’t I just be?! Why there gotta be so many rules to follow and boxes to occupy in this effen CancerLand?

OK, let me back up.

Continue reading ““She Was A Human Being””

Turning My Stomach

I know what you’re thinking: you see a picture of Joan Lunden in a post and think this is another celeb-with-cancer bashing piece. Not exactly. I’m certainly no fan of Lunden or any of these celebs sharing their “inspirational stories”–and in my opinion Lunden IS one of the worst of them. But this picture is only partly her fault. Let me explain.

You see, this is an ad for People magazine. That issue of the magazine, that cover, is old. Yet the ad containing the cover picture, with the little items around the magazine cover, yeah, it’s new. I tore it out of my most recent issue of Entertainment Weekly. I’ve been seeing the ad in a few other magazines this weekend–I was, um, sifting through a huge backlog of magazines to clear some out. Yes, I still read actual magazines, sometimes for recipes (glossy, colorful pictures motivate me better). And man, I’ve been behind in reading-‘n’-recipe-reviewing, so this weekend was all about reducing my backlog!

OK defensive digression over.

Are these items holy relics or something?
Are these items holy relics or something?

So in short, I saw this ad a few times and as I reached the last magazine in my pile I yanked out this page and took a good long look at it. As I did so, I understood why it turned my stomach more than the usual celebs-with-cancer stuff I see. Have you seen this ad? Have you really looked at it, thought about it? (I kinda hope you have seen this ad, since I am no picture/computer wiz–and this scanned copy of the ad is not very clear and probably too small, but if you click it, it should get bigger.)

The ad, which IS for People, chose this older issue to tug at heartstrings, to sell magazines (yes everyone seems to use certain kinds of cancer patients to sell product). People magazine is touting their attention to the details as one reason they are so good at telling stories about people worth being in their magazine (that last part about worth is questionable, but I’m going with it for now). Continue reading “Turning My Stomach”

Maybe Mayberry Ain’t So Bad

A few times on this blog I’ve mentioned that I live in a rural beach resort area, about 2 hours away from places like D.C., Philly, or Baltimore–home to John Hopkins. I live in a small town—think that old TV show about Sherriff Andy Taylor and Barney Fife—yes, sometimes it is like Mayberry here. While I like that, it can be a little limiting when it comes to health care. Rural areas, with their poor financial compensation offers, do not attract many doctors, and breakthroughs in treatment, cures, discoveries, etc., will not happen here. Hell, you could say that we have a severe shortage in health care options, especially since so many folks retire here and with an aging population health issues increase. In short, health care is a different animal in a place like this. I read so many blogs written by patients who went to Dana-Farber, Sloan Kettering, or whatever—and that just is soooo far from my reality.

Before I got cancer, I did not really care very much about that sort of thing—in fact, I would staunchly say that everything, including medical care, was just as good here as anywhere. After my false negative—which was due to human error, not a case of technology not producing an image of a tumor—and after hearing many other stories of misdiagnosis from clients—I began to think that health care is best done elsewhere. But schlepping “over the bridge” (the Chesapeake Bay Bridge, sometimes there is a whole “thing” about which side of it one hails from, as in, those of us on the east, Delmarva, side are just dumb hicks) is not feasible for me, financially or in terms of time to spare, etc.

I am now changing my mind again and thinking OK, maybe diagnostic abilities here are not the best, but treatment is better than I thought.

Not long after completing treatment, I attended a small-time local conference about breast cancer. A doctor gave a presentation and at the end, as almost a footnote, said that more doctors and patients should consider the unusual timeline of chemo first, then proceeding to surgery, upon a breast cancer diagnosis. I remember kind of going “hmmm, that’s funny” as she walked off the stage.

You see, I was told emphatically by the breast surgeon who diagnosed my cancer, and then the oncologist who treated me, that shrinking the tumor with chemotherapy first, and then having surgery and radiation was the best plan. It was of course, my choice, but they stridently urged this course of action, despite my not uncommon desire to “cut that THING out of me as soon as possible!!!” I heeded their advice. It worked wonderfully; there was only a small in situ piece left in the nipple (the devil that started it all) after chemo. That is down from a 6.6 cm tumor that was taking up most of the space in my small breast. Not only did the chemo first approach work for me, it was also implemented for my aunt, diagnosed just a couple months prior to my own diagnosis. My own experience and the experience of a relative closest to me had this “chemo first” plan, so I did not view it as unusual or new (remember, this is back in 2010).

It did not occur to me that surgery first was the most common path. At least not until I started reading blogs and reading how many women seemed to have surgery first. But reading the latest “Cure” magazine interview with Joan Lunden has finally made me go: OK, what the heck?!

Note—yes, there are many things I could be cranky about in terms of Lunden/all celebrity cancer stories, but I’m going to limit my discussion to this one item for now, for this post.

In the article, which I’m sure everyone has read, her decisions about treatment were under the section called “Trying Something New”. Unless I really read that section wrong, it implied that the chemo first regimen is kind of unusual:

“… there is still resistance to deviating from the longstanding dogma of surgery, then chemo, then radiation. The benefits of pre-surgical chemotherapy, particularly in the type of breast cancer Joan Lunden had, are abundantly clear.” – See more at: http://www.curetoday.com/publications/cure/2015/winter2015/a-two-way-street-joan-lunden-shares-her-cancer-experience/2#sthash.fQlogQBD.dpuf

When the doctors presented the idea of chemo first to me, they did not do so with any indication that this was a new or uncommon path, or even a deviation from the norm. They merely said that my tumor was so large, surgery at that time would be disfiguring. Chemo would hopefully shrink it to a manageable size. It did not sound like some new-fangled, cutting edge, wowee-zowee idea. No, to me, it sounded like good ol’ country common sense. Glad the doctors I encountered in my Podunk region deviated from the dogma! I was able to have a simple lumpectomy, and while I’m not happy about the removal of my nipple, I recognize my situation could’ve been so much worse—that I am more fortunate than most.

I have grumbled, and will again I’m sure, about the impacts of having cancer in a rural area, but I’m glad to know in this one aspect at least, my care was not so “Mayberry”—even if I did not realize how new-fangled my experience was at the time!

I am still trying to wrap my head around this concept. It seems strange to me that the treatment that I experienced almost five years ago is considered new and is being discussed as such by a celebrity. I’m not sure what I think about it. I’m just glad my oncologist was smart, informed, and open-minded enough to embrace it.

(Don’t) Take It From Me…

When I began blogging, I did not have a well-formed idea of what I wished to achieve. I merely started one as a way to create an identity to communicate with other bloggers. I’m not sure I ever set out to give advice to the newly diagnosed, and I hope I never did such a thing. I do know that as time passed, and the memories of treatment started to grow smaller in the rear view mirror (thank goodness), I became less inclined to say this or that thing did or did not help/work for me during diagnosis and treatment. When another woman in the support group would describe a problem, even one I’d faced, I was just not convinced I had anything of value to say that would help her (yes, the group was comprised of only females, not because males were not welcome, but because they never joined).

It’s not that I did not appreciate advice given to me in my first awful whirlwind days of diagnosis. Some things worked, other tidbits flamed out horribly. Heck, right now, I can only think of advice that didn’t work: get a wig, nope, rarely if ever wore it; chew ice during infusion to prevent mouth sores, no I wound up hating ice; buy button up shirts for after surgery, but while I had pain, I was still able to pull shirts over my head. No big deal; that is the way it goes. Part of my reticence has to do with realizing that I did not have it as bad or difficult as others. I engage in discounting, I talked about this very early on in my blogging days: see Could’ve Been Worse.

This history of “not so bad”, combined with 1) my tendency to push the panic button and expect the worst, 2) my view that it is impossible to know what anyone will feel/think/do until they are absolutely put into a certain situation and 3) my view of my cancer experience (diagnosis up to present day) as one in which I repeatedly ram my head into a Pink wall, makes me feel not so qualified to give any advice. I can tell anyone who’ll listen what I did about xyz, and if it worked for me or not, but…take it with a grain of salt. It may or may not work for you, I have no idea. I wish I could help, but I probably can’t.

In short, I am NOT the person to be a mentor to new patients, and have never signed up with any organization to be such a mentor. And never will. And again, if I’ve given advice on this blog, I’m sorry and please ignore it! Don’t ever listen to me if I ever start in with “take it from me, I did blah blah blah during cancer, and it was awesome/horrible….” I’m not saying ignore all advice; indeed, there are many bloggers or personalities in CancerLand who are good at this. By all means, follow their tips if you are so inclined.

That said, I am now going to say there is a piece of advice that has been popping up in the past couple of weeks in various online articles I read about cancer that I whole-heartedly, strenuously, emphatically, disagree with. I point out that I’ve only seen it in online articles because the funny thing is that the advice is…..newly diagnosed cancer patients should stay off the internet.

NO NO NO NO NO NO NO NO NO NO. The internet abounds with worst-case scenarios, and a panic button pusher like myself doesn’t need the help of the internet to imagine them. But I am still glad that I ignored that advice (because yeah, I was definitely told to not go to the internet). The problem was that I did not find and absorb the info that I know about now, and that is a great regret. Off the top of my head, issues like the is DCIS really cancer debate, mammography failures, making medical professionals inform women about their breast density, anything about HER2+ cancer, to name a few, I wish I knew about in the early doctor visits, so I could’ve asked better questions. The knowledge that I’ve gained from other blogs makes my head spin, and I often feel like I’m playing catch up when I get to the oncologist’s office.

The sites I found in those early days were not totally useless—in fact, they were helpful, although a little too positive and Pink. And certainly in the days after treatment, the internet again provided the solace I needed from the Pink. So when anyone says “stay off the internet” as an important piece of advice to the newly diagnosed—I just…NO.

Look, I’m sure there are a few folks who heeded that advice and it worked for them. But I do not think it is a good piece of general advice—it needs to be highly specific to the individual, and maybe most individuals don’t need this little tidbit. Furthermore, I don’t think “the internet” is the real issue. Perhaps the advice should be amended to: be careful of ingesting misinformation. Yes, one is more likely to run into misinformation on the internet, because of the sheer amount of INFORMATION there. But misinformation is insidious, and can be present the old fashioned way, in brochures, and from the mouths and minds of other people (the ones typing the misinformation on the internet).

The internet, specifically social media, can be a wonderful tool, and has been for me (and I barely use it compared to most folks in CancerLand social media). The trick is to find reputable sites, authors, and info, and to always check with one’s own personal medical team. And yes, to even challenge that medical team too.

And sigh, I dip my toe into the celebrity cancer patients issue here. Yes, it was Joan Lunden’s recent tips that pushed me to write this—sort of. As I’m sure most know, stay off the internet was one of ‘em. But here’s the thing: when I read her tips, it was the third time in less than two weeks I’d read “stay off the internet”, which was what really made me say enough is enough already.

Ah, there’s the rub. It amazes me that her tips cause a fuss, when cancer patients giving advice are everywhere. What makes her insights worthy? Because she is a celebrity—especially one of those trusted news-y types that Americans get their info from? Please. Those fake morning and evening tabloid-y shows are worthless when it comes to health info. Her tips, especially the stay off the internet one, are not groundbreaking, original stuff. Yes, I’m a bit biased. I was not a fan before her cancer news. I’m sorry she got it, but it doesn’t make her any more special than the rest of us—and by no means an expert at being a patient.

Look, like most folks, I’m just trying to muddle along, doing the best I can with the cards I was dealt by life. I was not dealt a winning hand, I was dealt cancer. Some things I do OK, others times I’ve fucked up beyond belief. I’m just a human, with all the failings and contradictions that come with being one. I’m gonna continue to seek out those sources I trust, use the advice that works for me, and trust myself to know when to do what I think is best for myself.

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