cancer – Page 7 – anotheronewiththecancer

King Cooper

I thought I was over that whole JAMA announcement hoo haa. You know, the one in which DCIS is not going to be called cancer anymore.

The main irritant in that whole mess for me was the blaring headlines, which did not explain the situation to the un-cancer-y. I begrudgingly give credit to a podcast in which the Sloan Kettering doctor pointed out that yeah, maybe DCIS will wind up being nothing to worry about for most people, but it still sucks for the 1% who manage to develop cancer from it (he did not say “sucks” but his mannerism and attitude indicated it—and for that I respect him). When I learned of the JAMA report, I read about it in a NY Times pieces, and this same doctor’s protestations were not mentioned until about the 13^th paragraph—and no one but the most dedicated of cancer readers will get that far into the article.

I remember wincing when I read it. It reminded me of the fuss a couple of weeks earlier. One headline got repeated on various internet stories over and over and over: “Alice Cooper Slams Mumford & Sons”. If anyone bothered to watch the linked video like yours truly, they’d see Cooper say he actually liked the band and only objected to the fact they were categorized as “rock music”—and he didn’t even accuse the band of calling themselves this! More or less, he was grumbling about the state of rock, claiming there is very little of it out there these days. The two groups he referred to as still carrying said torch for rock—Foo Fighters and Green Day—have each been around for about 20 years, hardly spring chickens, those dudes. Granted, Cooper said a few loopy things in the clip—I mean why does anyone need to eat a steak to produce great rock? Whatever dude—but he never slammed anyone, and I resent the lie the headline used to hook people into clicking to their sites.

Yeah, yeah, linking Cooper and cancer is a stretch, but is it? I’m so tired of misleading headlines, of truths being buried so deep into articles that no one notices, and no one challenges the reports, and no meaningful conversations are had. Just headlines. No one reads details, no one even trusts details anymore. I’m tired of it in every topic, cancer especially.

Even more, I’m tired of no new news.

Honestly, that DCIS-is-NOT-cancer thing was not a new topic, the JAMA report was just making it more official. I’d already read conversations in breast cancer communities supporting the idea that it is cancer-to-be or others slamming those with DCIS as not having “real” cancer. That topic I won’t touch with a ten foot pole!

So tired of the same old shit. I want something new, something I’ve never heard or seen before. What brought on this renewed fuss about that old incident?

I sit here writing this as I watch the nominees for the 2013 VMA nominees. I see pop starlet after pop starlet lip sync in their videos and I am shocked that the videos have not changed for over 10 years. The same cliché shots: young singer in water with heavy eye make-up, giving the camera the come hither look; the hand on hip with seductive hip twitch, again with the come hither look, the same line of sexy women back up dancers. It is as if these girls grew up watching videos with the sole goal of starring in videos EXACTLY like the ones they grew up with—innovation be damned. And the boy bands are exactly the same too. One video’s plot suggested a boy band change their image to the classic Village People look. I found myself wishing someone WOULD dress up like the Village People. Sure it was done before but at least only once—because what I’m seeing has been done like a million times.

Technology changes every five minutes these days—always new software I gotta learn, a new phone I want but gotta wait 2 years to have (and then I have to learn it). But I’m stuck with the same pop tartlets and the same cancer news. WTF?

Headline news, cancer news, pop culture news—PLEASE gimme something new! And someone give me Alice Cooper’s email address. I wasn’t much of a fan of his growing up; I began liking him later in life when I started listening to his radio programs. But best of all I suspect him of being a fellow curmudgeon–maybe he is King Curmudgeon Cooper. I think I need to hang out with him, we can curmudgeon together about the state of rock, of cancer, of culture.

I Can Pretend

I used to stubbornly insist cancer did not teach me any lessons or change me, because the only changes the cancer warrior culture assumes happens are of the “after cancer you’re a better person” variety (see here). But now I am changing my mind, and realizing and accepting that cancer did change me, teach me lessons…and they are NOT the happy sappy lessons that society wants learned. No, cancer is teaching me that it is preferable to lie.

Much ink is dedicated to the Dumbass Things People Say to Cancer Patients. Now I’m considering the opposite: Dumbass Things People Want Cancer Patients to Say. I’ve seen a couple of pieces lately that talk about how cancer patients are asked “how’s your cancer?” or some such nonsense, and how lame it is to try to answer, because the person asking only wants to hear that everything is OK. As discussed before, some folks are all in during the first few weeks of diagnosis, then tend to fall away as treatment drags on, like treatment always does. The expectation is the patient should be all done, right away, and people are tired of hearing about the boring cancer. So I see bloggers and hear others admit they just lie, and say they are “OK”, when nothing could be further from the truth.

I experienced this my own stupid self a couple of weeks ago. Typically, if it is someone I only slightly know who is doing the asking, I tend to just say “I’m fine,” or “no tumor today!” The person who asked me recently was someone a bit closer, so I felt more comfortable giving the long form answer. Unfortunately, I happened to be going through the impending check-up dance—you know, blood tests, mammogram, see the ol’ oncologist—all that jazz. So in short, I was nervous, having no idea what kind of news I was about to receive. Perhaps I should’ve just said, “I’ll get back to you next week.”

But no, I rambled on about how this, that, and the other is still a worry and about things like the thrill of being able to stay up to see the late night talk shows without having to take a nap during the primetime shows, how great it feels to not make a choice between the two. Stupid little victories over side effects.

When I finished my ramble about the joys of staying up late without napping, the person who asked about my cancer said, “oh, you’re not as tired as you were during treatment, that’s good, that’s all I wanted to know—you’re better.”

The job I held when diagnosed with cancer required much interaction with the public, in a small town, at large public events, and I did a good bit of standing up and speaking in front of small audiences. My absences and changing appearance (my wigs sucked and I never wore them) were noticed, so I was upfront about my cancer diagnosis right away. It was just easier than dodging it or beating around the bush, or so I thought at the time. I hold a different view now. I wish I had not told anyone really. Oh people would’ve found out; that is just small town grapevine stuff. But folks would’ve been less likely to bring it up to my face. Because now I’d rather not be asked about it by people I don’t remember well when I run into them at the store or wherever.

When people now ask me about my cancer, my true, big-mouth nature just wants to lay it all out there—the constant fear cancer will come back, my paranoia that every strange bump or slow healing scratch screams “cancer”. I worry that the changes in my body that are in reality PROBABLY just the signs of aging and being 41 years old, might be lingering side effects.

But no, more and more these days I feel the necessity of participating in this small aspect of the societal expectation of the warrior/survivor/cancer-ass-kicking myth (I tend to thank the doctors and drugs for my survival; I’m not a warrior). It is just easier to lie and say “I’m fine.” No one wants to hear my whining, my fear, MY REALITY that cancer is always around the corner for me. Because if that is the truth for me, it could be the truth for anyone, and no one wants to think about that.

I think back to the conversation I had with the person mentioned above. The morbid, exasperated side of me wonders if I show up in a month with a recurrence, how will that play out? Will the person who asked me say, when chatting with others, “I saw her not long ago and she was fine, getting back to normal.” Will she sigh, shake her head, and make some comment about the unpredictability of cancer, how it strikes when all seems well, when recovery is within grasp?

That’s just it isn’t it? Some cancer patients know how cancer came out of the blue. And we never think it’s “all fine”, we’re always worried it will come back, no matter how great everything seems to be going. It doesn’t matter how many lies I tell, including the big “I’m fine” lie, I know what can happen, I’m aware of it every single second.

New and Improved!

Something I Can Use

Punk Rock (Breast) Cancer

The D Word

Take the Mythical Image of the Strong Warrior Breast Cancer Survivor And Bury HER Once & For All

I’m Allowed

A very special thanks to Tumblr buddy lux-fiam, who guided me as I struggled with this post, and to my IRL spoonie/fake psychiatrist/professor friend, with whom I fight The Overwhelming.

For the people who say “thanks for this.”

This post is about allowing myself and encouraging others to do cancer any way we damn well please.

Just prior to starting this blog, and in the hazy days of bouncing back from the treatment side effects, I was in a bit of a depression. As I’ve mentioned in previous posts, I had no time or energy to find blogs while I was actively in treatment and working my ass off. During treatment I was not happy with the rah-rah/pink/warrior culture that was the most prevalent form of support available (except in the diagnosed-under-40 support group, thank goodness). After I made some life changes, I was pleased to finally be able to take some time and dig around and find blogs or articles that said some of the thoughts that were more like mine, and I began blogging to interact a bit.

Around the same time I found other blogs, I had an epiphany. I was at some event last autumn with other cancer patients and expressing some anger. A fellow attendee started suggesting stress reduction methods, telling me that I must “accept” my cancer and ended her pseudo-lecture with “you can’t be angry all the time.” I was just so sick of this type of lecture; it wasn’t the first time I’d heard words of that nature. And BTW, I don’t think people mean the dictionary definition of “accept” when they tell me to do that; I think they really mean “shut up and sit down”.

There I was, a 40-year-old woman, being talked down to like a 6-year-old, because, being, ahem, a couple decades younger than most in the room, I was the youngster, the newbie; never mind I’d finished treatment already. I was not a cancer expert (and still am not), but I wasn’t a novice either, for crying out loud.

Then it hit me—why was I even listening? I can be angry if I want! I probably thought those sentences in the petulant voice of the 6-year-old me, but the minute I did, half the anger just fell away. And it continues to fall away still. By giving myself permission to be angry, sad, frustrated, etc., I become less so, especially with each post I write. Sure, anger & other bad company are still there, but in a weakened and more useful way–they inspire and motivate me, to speak up or write these posts. Whether they should be posted and sent into the blogosphere—I’ll get to that in a minute.

While I get that people who say “think positive/cheer up” and that sort of thing are well-intentioned, maybe even trying to help—the result for me is the opposite. I just get more pissed off, because in my mind, my feelings are being diminished, dismissed, blown off. That never feels good. Cancer sucks, but being told how to do cancer sucks too. Part of the crapfest that is cancer is the culture around it (especially true in breast cancer), and the culture demands conformity, and as I’ve said in previous posts, I cannot do conformity. It is great that the normal, socially acceptable warrior/pink/rah-rah methods work for the majority of folks, I can respect that. I’ve seen people swallow negativity and wondered if they could achieve better peace by letting it out, but it is not my place to tell them what to do. And I don’t want to be told what to do/how to handle cancer either.

This blog is to escape and to challenge all of the bullshit in the warrior cancer/don’t worry, be happy world that just does not ring true for me. Here, I express my thoughts in my way, no matter if they are angry, or blunt, or whatever other unpleasant adjectives can be applied to them. Here, I express my experiences of cancer without (much) self-censorship. My professional life before 2012 was very constricting, so I wanted a space where the rules, limits, deadlines, ideas were mine alone. This is that space.

I think many would tell me I should keep my ugly thoughts to myself; I should stop sending negativity out into the universe, or blogosphere. But my challenge to that attitude is this: why is expressing negative feelings automatically considered a negative action—why can it not be viewed as a positive, “working through it” technique, which is kind of the point of a lot of therapy? How can bad feelings be turned around if not confronted, if they are constantly submerged, denied, hidden politely away? And most of all, why is it assumed that expressing negativity means the one expressing it is negative on the whole, and somehow not capable of experiencing other emotions (sometimes simultaneously)?

My blogs are not read by many, but the few comments I’ve gotten here or on the other blog tend to say “thanks”, and some variation of “I thought I was the only one who felt that/this is what I’ve been trying to say.” So while many hear/read thoughts that make them uncomfortable (which might be behind some of the “get happy” suggestions rather than a desire to really help), those same thoughts provide comfort to a few. I remember all too well last October not knowing what search terms to use to find people with opinions similar to mine, and I remember all too well how relieved I was to stumble, bass-ackwards, onto blogs that did express such opinions. So if my blog is just one more place someone can stumble upon and find relief, then my own victory over anger & company is nearly complete. I hope your victory can be found here too.

Something I Can Use

I know some of my views are unpleasant. I know I say thoughts maybe best left unsaid. And here I go again.

I have yet to become enamored of Twitter, maybe that will change, but it does lead me to articles I would not have found on my own. Nancy’s Point tweeted a HuffPo essay that I would’ve missed, because I’ve avoided HuffPo lately since every time I go there I just get pissed off. I re-tweeted it (because I’d rather mooch other tweets than compose my own I guess) and posted it in other various places. I’d read the post and agreed with it without giving much thought to the title: “Nobody Shaved Their Head For Me”. Even after reading it a couple of times I’m still not sure if the author even wanted any commiserating head-shaving; what struck me was the truthfulness of the main thrust of it: that big push of support in the beginning, and then the “aren’t you done with cancer yet” crap when treatment is maybe only partly over, and how that makes some friends fall away. Mets patients must drive certain people nuts, since they will never “be all done with cancer”. (Mets patients—fire away with this idea in the comments, of course.)

My own worst story in the “be all done with treatment” comment department came from a former co-worker during a lunch event. I was in the middle of Herceptin, maybe a week out from finishing radiation. She said something like “but you’re all better right, you’re all done, right?”, in her usual hyper, brusque manner. I remember saying no, and muttering something about being HER2+ and the length of treatment for it. But here’s the catch. Her own father was in his final weeks after a couple of years with Stage 4 cancer, so I assumed she understood a little about how cancer lingers. But then I think, perhaps she resented me for being only Stage 3, and for the fact I was expected to live. I cannot say this woman was a friend, but this scenario does show the complications when you have cancer, your friend doesn’t but has a parent dying of it. And so there is another dimension in the discussion of How Friends Fall Short In Supporting Us Cancer Patients. Too heavy for me to get into right now, maybe, but would love to hear thoughts!

But I digress, getting back to that HuffPo essay title. My buddy Greg commented that he never wanted anyone to shave their heads for him, although he agreed with the main thrust of the piece. This got me thinking, and remembering some stupid tidbit about Miley Cyrus shaving her head for cancer patients—I’ve no idea if it was for a charity or what. I did not comment on it then because it seemed beneath notice, but this essay title dredged up some thoughts I had about it.

Well, if you know the Cancer Curmudgeon, you can guess the verdict. I think it all a bit silly.

Sigh, yeah, I know it is a well-intentioned activity, and maybe if it is done as an event or project that raises money, that’s great (if the money goes to reputable groups, that is) and if folks become aware of some of the Crap That Comes With Cancer, well, I’ll never object to that! But the bottom line is that cancer is to be faced by the patient alone, and head-shaving in solidarity just does not impress me. Is being bald the worst part of cancer? For this breast cancer patient, is it worse than the loss of breasts?

No. Not for me. The loss of the hair in my nose I found to be far worse, and I won’t even go into the loss of other hair today. The nausea, constipation, radiation burn—a hundred times worse that being bald, and I had to do that alone, no solidarity opportunities. The surgery, the loss of a chunk of my breast including the nipple—a million times worse than being bald, and I did that alone, no one could do that for, or with me. No, I do NOT want anyone to go through any of that with me; I don’t wish the horrors of cancer on anyone. But at the same time, I don’t want anyone to think they understand surgery or the rest of these horrors of cancer by participating in a mere head shaving. That is why I find the whole thing so ridiculous. Sorry to point out the wedge between the sick and the well, but unfortunately, the sick do have to go where the well cannot follow sometimes

I prefer what is tangible, immediate, and practical. Yes, bringing food, providing a shoulder to cry on, taking care of housework and/or kids, these are practical, useful, solid supports. What else folks? Leave me comments. I had a great deal of support for which I am grateful, and it benefited me greatly, especially financially—VERY needed. No one shaved their head for me either, but someone did give me a ginormous bottle of powdered laxative (she is also a retired infusion nurse, so she knew what was needed, and she gave me the Neulasta shots, saving me from yet another visit to the money sucking cancer center—bonus! Told you I was lucky!). Now THAT is practical, useful shit. Pun intended. And yes, preferable to a damn head shaving.

These examples are what one person can do for one cancer patient. What about bigger ideas, for the community of cancer patients? I pose this question because I suddenly remember that National Cancer Survivor Day happened last month. I did not even know the day existed until I saw it on blogs…the day of! And from what I read, seems most were unimpressed with it. I’m still unclear as to what is supposed to happen that day. I see words like “gather to commemorate” and “honor their strength and courage”. I shrug, I guess it is fine to be honored, but I really need things like a better health care system, outrage at the high prices of medicine, and I need people to not just assume insurance takes care of it all—I’m sure many cancer patients know what it is like to battle the company when they tell you they won’t cover a procedure, many days after it already happened. I’m not prepared to argue the ins and outs of insurance and the Patient Protection and Affordable Care Act, because I’m not that smart about it. Those first two words are so important. I AM prepared to tell you what it is like to get rejected by insurance companies for having a pre-existing condition known as cancer. I AM prepared to tell you that if I get bad news in a few weeks at my six month check-up, it will be disastrous for me, and I can tell you all about that kind of fear. I AM prepared to tell you what it feels like to be an unprotected patient. Heavy issues like that cannot be solved with a feel-good activity like head-shaving.

A few other unpleasant opinions that resulted from my exposure to the interwebs yesterday: The comments on the piece. Oh yeah, these are why I stopped visiting HuffPo. I want to believe that comments sections are a great place for discussion, to see ways of looking at issues I have not considered. I’m really naïve for being a self-professed curmudgeon.

Wow, cancer patients versus other cancer patients. This is a sore spot that I will avoid now but am confronting in a future post. For now, suffice to say that there is no right way to do cancer, and patients who’ve found cancer to be a gift and are coping without this supposed whining—great for you, but some of us cope this way, some of us hope that by talking about the negatives we can improve them. You don’t have to read our “whining” posts, much less comment, why waste your time? I doubt the woman who wrote the HuffPo piece is going to suddenly have a change of view because of such tsk-tsking and “be positive” finger wagging. One way does not work for everyone (click here).

And wow, a non-cancerous person who pointed out that the patients’ friends are new to the whole “how to handle my friend with cancer” thing too. Well, yeah, but is that not why essays like this are good? So the conversation can get started, so these interactions can be improved when other young people get cancer? Isn’t talking about it best? Shouldn’t that be part of any friendship, why should cancer, or any tragedy—like miscarriage, death of parent/spouse, loss of job, paralyzing accident—be a changing factor? This is precisely why I liked the post so much!

Look, it may be difficult for those friends, but they still have health, which the patient has just lost. I get that it is hard to know what to do. I once WAS such an acquaintance that did not know how to handle cancer patients’ pain. But I learned the lesson the hard way (yeah, yeah, I know I say I did not “learn” anything from cancer, I changed my mind, so shoot me). But my sympathy can only go so far; I reserve it for the cancer patient, now that I’m on the other side (in the land of the sick). And the cancer patient who wrote the piece IS telling us what patients need from friends—that is the whole point!!! Rather than going on the defensive, maybe listen instead? Better to listen to what she says than learn it the hard way, like I did, by actually getting cancer.

Having essays like this, starting conversations about this, should change and improve future cancer patients’ experiences. But no. Instead I see that usual reaction: cancer patients should just be grateful to survive, should stop complaining about cancer, and cancer patients are not allowed to want more, to want better.

To the supporting friends I say treasure your health, and please stop judging how the sick handle being sick.

Slurp! A Different Look At Doctors & Patients Relationships

I see so many posts on various blogs praising (or, uh, the opposite) members of their medical team. And in person, I’ve run into so many people who looooove their oncologists.

I’m not the sentimental sort, and while I am fond of my oncologist, I wish I never met him. I was treated in the only cancer center for miles around in my rural area, and he is the Medical Director of the joint. He’s very calm and even keeled, and very humble. I remember being a bit surprised when I learned, about half-way through my treatment, that he was the dude in charge. He doesn’t act like the “I’m-in-charge-here sort”, and that’s good.

Now, on this blog in a few posts here and there, I’ve mentioned a couple of points that are key to this post: 1) This is a rural area, so, in other words, my cancer experience is really, really unlike those had by patients at Farber or Sloan-Kettering. Here, a cancer patient is quite likely to run into one of the nurses or doctors at a grocery store (ok, we’re aren’t so small town that there is only one store!) 2) I am a pet/house sitter, so I spend much time living in other people’s homes in various neighborhood developments in the area.

Have you figured out where I’m going with this?

A few months ago I gained a client that has kept me quite busy, meaning I’ve spent most of my time in one neighborhood these past few months. This client has a gorgeous yellow (practically white) Lab puppy, and Puppy has personality to spare. I’ve been working closely with the client on puppy training, so I’ve been immersed in AKC guidelines and Good Canine Citizen training and just good old fashioned getting the puppy socialized. Puppy and I walk up and down every street every day, practicing all kinds of commands: stop, down, sit, leave it (bleh, I say that one a lot, given Labs’ keenness for small dead animals that are ever present here in Road Kill, USA), stay, let’s go. Puppy is pretty and happy, and well loved, and we visit many folks on our walks each day; especially the after school gang. Puppy loves the after school gang with their melting fruit-flavored ice pops all over their faces, and they are still short, so their faces are still close enough to the ground for optimal slurping!

One lazy Sunday, a car approaches and the driver raises his hand absent-mindedly and I, as I always do, wave back. Like I said, this is small town values here. Everyone waves at everyone else even if the other is a stranger (or, there are no strangers). But this time, no, it was my oncologist waving at me. As I lazily throw up my hand, his gaze returns to a neighbor’s lawn decoration.

I see it as the wave of “the friendly neighbor”, not “hey, I think that is one of my patients,” and realize, good grief, he did not know who that was…walking down the street, hair a mess, in cut-off shorts and an old rock concert t-shirt, with plastic poop-pick-up bags streaming from my pockets. And why would he, I was not wearing my usual outfit, the oh-so fashion forward, cheesy-ass, flimsy hospital gown. My goodness, does he ever recognize anyone out of the cancer center?

Clothes are our armor, how we face the world by presenting a carefully selected image. Or in my case at that moment, just stuff I did not mind getting dirty. In exam rooms we are vulnerable, literally and often figuratively naked. To doctors we are not our image. To him, I am not cool-aging-punk-rocker equipped with my dog-walking gear. I am one of hundreds of scared breast cancer patients.

If you think this post is going to get all heavy, nope. There is a little more to tell here, which I find funny, but then I have a warped sense of humor.

Puppy and I continue on the road the doctor had just used to drive home. She spots it before I do, unfortunately. Freshly squished baby frog. Before I have time to think, “oh Dr. _________ must’ve run over that on the way home,” SLURP! Puppy consumes it, just as she does with most road kill if I don’t see it first and issue my “leave it” command.

Puppy is happy; satisfied she got one over on me. That night I curse my oncologist. I know, I know, I scoop poop for a living so it shouldn’t bother me. But that sort of thing grosses me out a little. Especially an hour later when Puppy wants to kiss my face with her tongue.….“Go away frog breath!”

Like I started this post, lots of cancer patients love their oncologists. I’m fond of mine. Puppy, however, worships and LOVES him: Dr. ___________, Frog Killer, Provider of Tasty Snack. Someday, when Puppy and I show up in his front yard, I know she will roll over on her back asking for a tummy rub, and when he leans down, she will slurp him too. I cannot prevent this from happening.

Now, the only question is this: when I see him for the every-six-months thing in a few weeks, do I tell him what happened?

Cake

“Yeah, but bacon tastes good. Pork chops taste good”

–“Pulp Fiction”, 1994

While I was ranting in the previous post about how the media treated the recent death of Gandolfini, I began ranting about how TV doctors, commercials, and other media go on and on about healthy diets, and soon I was going on and on and on about food and weight loss and the judge-y judgertons on TV, and had wandered away from just fussing about Gandolfini and how his death got treated. I realized just how much media messages about diet and weight bother me.

I call this post “Cake”, but I don’t just mean cake; I’m using that one four lettered food item to stand for:

Ice cream

Chocolate

Fried chicken, oh heck, all fried foods, fried stuff with cheese, to quote Joey Tribbiani

Rare steak

Fudge

Bacon

Cheeseburger, cheeseburger, cheeseburger

Pie

Mayonnaise

Brownies

Mac-n-cheese

Potatoes

Candy

Fruit juice (not the real, 100% juice kind)

Coca-cola (I mean all soft drinks, where I’m from Coke means any syrupy, carbonated beverage)

Wine

Vodka

Biscuits

Pasta

Waffles

Food smothered in any kind of creamy sauce, mmm, like Alfredo

Sweet tea

Pizza

Spam, spam, spam, spam, spam, spam, lovely spam, wonderful spam

In other words, every food or drink that is awesome but is aiming to kill me. For the record, I don’t like soft drinks or soda pop (whatever your region calls it), or pie, or spam (my favorite song), but I’m listing foods that I know many others enjoy.

Now, I love when y’all comment on my posts, but I gotta ask this time that no one leave me a lecture about healthy diet and exercise, or moderation. I don’t eat a box of pasta and a jar of sauce every night for supper. I get the concept of moderation. This post, in combination with the preceding one, should explain that I GET IT, I just feel like I’m being lectured all the time with the constant messages about losing weight. Liberal media, Right wing media, shoooooot, Diet media is more like it. Sometimes I think that whole Cancer Thing I had there was just a plot constructed by The Smoking Man to get me to eat a damn salad. (Kidding, I ate salad in my BC—before cancer—era, I just do it more now). Who is The Smoking Man? OMG, stop reading and go stream all episodes of “The X-Files”, like right now, before I sic the unmarked helicopters on you. My love for that show probably explains too much of my blog.

Anyway.

You guessed it; this is just a humor post, me blowing off steam by going to the ridiculous extreme. I’m just complaining, and kicking against this constant need to behave sensibly that cancer seems to have imposed on me. No, this post was written by the six year old me, and she is cranky. And she wants a donut.

But in all seriousness, the issue of weight in all health-related pieces I see or read is really making my blood boil lately, and Gandolfini was the last straw. Wanna hear something stupid? BC, I was not overweight at all. I was in the correct weight span for my height. Was my BMI perfect? Doubtful. Was I a pleasing shape? No, I looked like—and still look like—a marshmallow with toothpicks for arms and legs, because all my weight gain goes to the middle, turning me into a box shape (oh yeah, forgot marshmallows in above list—but I don’t like them either). Was I fit or in shape? I’m not sure; I mean I had two physical jobs that required me to be active and do lots of heavy lifting. So, no I wasn’t in the gym, mostly because I was busy, working my ass off to get the money to pay the bills. I had no immediate health risk factors for anything really, other than my family (genetically and you know, stressing me out, driving me crazy).

Now, post-treatment, yeah, I’ve put on some extra pounds, and that has everything to do with chemo. During those first awful weeks of chemo, I hated all food and doubted I’d ever want to eat again (and yeah, lost ten pounds very quickly, my pants kept falling down, plumber butt!). Two years after chemo ended, and the smell of most foods do not make me nauseous anymore, it’s like I still cannot quite believe my good fortune at getting my appetite back. I’m like a kid in a candy store, or cake store, or steak store, or fried chicken store, or caramel popcorn store, or…you get the idea. So, I wasn’t overweight before cancer, I gain it after cancer because I missed the taste of food so much, and now all I hear is: fat causes cancer. I just want to scream! I can’t win for losing. So if I get cancer again, can I sue chemo treatments for making me appreciate food anew, and therefore causing me to overeat and get fat causing me to get more cancer? Yes I’m being facetious and sarcastic, to make a point.

I’ve been rolling my eyes lately at the commercials in which a woman is confronted with a donut or cake or a person dressed up as a cupcake or some such nonsense, and she chooses the healthy fruit-filled cracker-like snack. It’s just so stupid. That supposedly healthy choice is not at all healthy (preservatives, empty calories, and all kinds of other crap) and it is just so unrealistic. I would take that cracker and throw it, and then devour the cake. The ad doesn’t make me buy their product; it does make me cook fatty foods. I once watched a film about food that started off promising, talking about why humans crave the carbs and sugars and what not, but then it turns into what seems like an ad for juicing (I did not check, but I can take a guess at what or who funded this documentary). Not once in any of these types of commercials/films/shows does anyone acknowledge a basic truth:

CAKE TASTES GOOD AND THAT IS WHY I WANT IT. All the fancy juices and jam filled crackers in the world will not change that fact, why will no one admit this?

I do not have great will power, but when I do manage to exert even just a little will power, it comes from admitting to myself that hey—I want that cake (or any tasty food) because I LIKE IT. I don’t stupidly pretend that better-for-me foods will give me even half the joy or satisfaction the cake could give me. Otherwise being healthy would be easy, and I would not need films, commercials, and talking head TV doctors lecturing me. Of course, this line of discussion gets too close to that Kate Moss quote (“nothing tastes as good as skinny feels”).

Of course, that opens a whole other can of worms doesn’t it? A friend with numerous chronic illnesses (none of them being cancer) must avoid fats and sugars to avoid going from feeling bad to worse. It is like a simple mathematical equation for her: Insert cake into mouth = feel terrible all night. Lucky for her, she is one of those people who just don’t care much about food, and cutting out certain foods doesn’t faze her, she never misses any of them. Well, that ain’t the case for me and the equation is not so simple in cancer. Being fat is a risk factor but not an absolute. Cutting out all the things I love (wine, chocolate) does not give me a 100% guarantee, and I want that guarantee. And again, don’t send me a lecture, because I’ve heard the argument: being fat is a risk for the post cancer woman because then she’ll just die of a heart attack, if not cancer. Gee, thanks. Health nuts get their panties in a twist about this one all the time, I know it, I understand it. Now, can I have a piece of cheesecake to enjoy?

Sigh, guess I just have to file this problem under the “life’s not fair” section, and muddle on.

But maybe my real point, in all this fussing, whining, and moaning I’m doing here today is this: I have a sneaking suspicion that cancer has made me afraid of enjoying some of the simple things in life I used to like. I wanna go outside; nope, pesticides. I wanna go to the beach; nope, sun = skin cancer. I wanna dye my hair magenta again; nope carcinogens in beauty products. I wanna eat something good; nope, I’ll get fat. It’s like I live in a world full of “nope” now. No, I’m not being so drastic or extreme as to suggest that for all the limits on my life now maybe I should’ve just given up when I got cancer. Not at all. Just sayin’ real simple-like, I know a life-long health-nut guy who stopped eating sugar and his Lymphoma keeps coming back. Remember—no guarantees. All I’m saying is, I could take those twigs on TV a little better if they’d just admit they want the cake, rather than putting their noses in the air, piously waving the sweet treat away and then downing a glass of something that looks like liquefied crap that came out of the lawn mower.

A friend sent me a quote once about not just wanting to survive, but wanting to live. If I can get 10 to 20 more years, well, by golly, they will be ice cream-filled years. Now that is L-I-V-I-N’.

Can We Not Have A Teachable Moment Just This Once

You’d think after that eruption I had a couple of weekends ago I would have stopped following the “Time” magazine health blog. But apparently my idea of fun is hitting myself upside the head with a 2 x 4. I kept getting their posts on my reader, until yesterday. So what pushed me over the edge?

Last Wednesday evening when I heard James Gandolfini died of a heart attack I was at first sad; although I was not a big fan or anything, he was a great actor who happened to be very famous for creating an icon (in my humble opinion, famous people who act for their profession are often NOT very good at it, but he was, let’s get that distinction out there, clearly—and also acknowledge that the best actors are often not famous). Bottom line, I did admire his work if I saw it, but gave him little thought otherwise. I hated the thought I had a split second after hearing the news: oh man, when are they going to start talking about his weight, relating it to his death?

Sure enough, a few hours later talking head doctors are all over the news programs like flies on shit. The next morning, all the morning shows (why the hell do I keep turning these things on? I could remove my risk factor for stroke and nervous breakdown by not watching these shows) had their on-staff health reporters talking about Gandolfini’s past with substance abuse and of course, his weight. I started writing this post on that day, but luckily, all the chatter died down (or I was just outdoors enjoying summer more, out of touch with TV and internet), so I put it aside. Then yesterday I check my WordPress reader and I see a post from “Time” tying Gandolfini’s weight, and his death, with the concept of “the Family” (read: mobsters), and how everyone has the obligation to take care of the self as a part of taking care of their own family/”Family”; a humorous (I guess) nudge that even the mobsters reading the post need to get fit, for the sake of others, you know, if they won’t do it for themselves. The post was weak and silly and said nothing new.

The worst part of the post, however, was a claim that all the other coverage of this event ignored Gandolfini’s weight, contending that commentators sidestepped the topic, saying if an anorexic starlet had been the dead person in question, the health concerns of being too thin would’ve been talked about immediately.

Say whut?

The blog post’s author was apparently not watching/reading the same stuff as I, in which THE WEIGHT was a BIG talking point. No one was being “coy” (author’s word, not mine). In fact, one of the points I wanted to make when I started writing this post—before trashing it last week and reviving it now—was the subtle implication that when someone dies of heart attack (or gets some other disease, like cancer) and they are the least bit overweight, well, gosh darn it all, they’re just asking for it, and they got themselves into this fix because they are fat lazy slobs. Just the fact the on-staff medical reporters were immediately dragged in front of the cameras the morning after to talk about heart disease prevention was, to me, a quiet indictment of Gandolfini, a gentle finger point: this could have been prevented had he eliminated his risk factor (as in, slimmed down). Oh sure, they make sad faces and express sorrow over the treasured celebrity’s death, but in saying “you can prevent this from happening to yourself” while they pull the sad face, they are saying/not saying, “he brought it on himself”. One talking head doctor actually said the phrase “if any good can come out of this” when saying this event is an opportunity for viewers to start becoming aware of their own risk factors. The insensitivity shocked me, but why? Having cancer my own self taught me that some people, when confronted by the sick person, start calculating their own risks, assuring themselves that their diet is better than the patient’s, so they’re “safe”, all the while expressing sadness and comfort to the patient’s face. I remember practically being able to see the wheels in some folks’ heads turning this idea over and over, while they spoke to me, and asked me about my sugar intake.

So you may be thinking to yourself, why is the ol’ Curmudgeon bitching about this? Of course heart disease, being overweight, and substance abuse are dangerous and we all need to take care of ourselves. I get it, being overweight causes problems; I don’t need convincing arguments. I’ve no quarrel with any of this. Yes, we do need to take care of ourselves and I have no objection to creating new healthy habits and taking better care of their bodies—I’ve done it myself. My stupidest example? I LOATHE tomatoes but eat them anyway because they are supposed to be great at preventing cancer.

But why does it take a celebrity event for the public to become aware of health threats? Is there really anyone out there thinking, “OMG, James Gandolfini can die of a heart attack, so maybe I might too?” C’mon, do you really need Dr. Pretty Hair Know It All On TV to tell you this stuff? I learned about health and nutrition in school and high school graduation is now an over 20-year-old event for me, so it’s not like teaching it is new. Are they no longer going over this stuff in school? Was it not covered when the Boomers were in school? But somehow I doubt Boomers are still ignorant of basic health knowledge. I mean, look at the cover of every periodical in the grocery store, rambling on and on about this protects you from cancer, this causes heart disease, yada yada. Info about weight, exercise, not drinking, and all the usual suspects, is the topic of so many news items on TV, so many daytime programs, on the cover of so many magazines, to me it seems impossible to avoid knowing the basics (this is not to say the headlines and abbreviated segments on the news really give in depth coverage of these health topics, I’m sure misinformation and misinterpretation thrives, but the basic message–lose some weight–is there). Messages about proper diet and exercise are everywhere, how the hell are people missing it? Why are talking heads acting like this is all brand new info?

I guess there are a few reasons I’ve not thought about until now. First and foremost is that since the health messages are so plentiful, they have become white noise. I know I tend to tune out every time I hear about some new health property about a mundane food…I’ve heard it all before, and if I hate that food, it could make monkeys fly out of my butt, I still ain’t gonna eat it. (Ha ha, that is a lie, I just admitted to the tomato project. But still, you can tell me yogurt could turn me into the Queen of England, and I won’t eat it. That crap might as well be flavored snot for all it doesn’t appeal to me). I probably register only about 10% of the messages that bombard me; yet the few I do hear annoy me enough to write this post, (maniacal laughter)!! Maybe everyone is distracted by shinier topics: who cares if blueberries can prolong life, because OMG, a Kardashian did something and Miley Cyrus is smoking weed with Snoop Lion! (That sentence alone should make one realize that celebrities should NEVER be role models). Maybe everyone in my demographic already HAS the message, but the messengers have yet to figure out how to reach the other target audiences (yes, I’ve covered this issue before), so they just keep repeating it into the ether, hoping the message will land on the right ears, eventually. And maybe, just maybe—and listen up, this is my favorite idea—we know what is good and bad food, and we just keep eating the bad food because it is yummy. Ooooo, that topic is a whole other blog post (stay tuned).

Side note: I recently ingested a tidbit, not sure where or how (read it, heard it, saw it on YouTube), about how doctors don’t discuss healthy diet and exercise with their patients, and that is going to change in the future. But given the messed up state of health care, not sure how it will help since the people most in need of hearing the message can’t afford to go to the doctor unless it is an emergency type deal. Just sayin’.

The other problem with weight is that it such an easy target for those people who get attached to a concept I call “The One Thing”. Allow me to channel SNL’s Stefon for a moment to explain “The One Thing”:

It’s that thing, where people get all hung up on one idea and think it’s the only thing causing all the problems. This concept has everything: simplicity, the luxury of ignoring other ideas, single-mindedness, DJ Baby Bok Choy.

Ha ha, just kidding on that last one (if you’re unfamiliar with SNL’s Stefon, give yourself a time-out laugh and look up one of his sketches).

The best/worst example I saw of “The One Thing” kind of thinking was in some comments about AJ’s Big Announcement. The commenter thought AJ’s action unnecessary because according to this person, the root of all ills, especially cancer, is second-hand smoke (not even, you know, just smoking, whew!), and went on and on and on for several loooong paragraphs about that and ONLY that, to the exclusion of any other idea. My reaction (and I bet others did this too) was to kind of back away, going “ooookkkaay”. Kind of like another SNL character, Girl You Wish You Hadn’t Started Talking To At a Party (or whatever her name is). Guess that BRCA thing was just incidental in this person’s mind. Weird. But the catch is, some health or medical professionals get into that rut too, and I get a little worried that by focusing on “The One Thing”, other factors are getting missed. It seemed as the day after Gandolfini died wore on, I heard progressively less about his past substance abuse, and eventually only heard about the weight factor.

Back to the guy who inspired this post: Gandolfini. I never again want to talk about him (or any artist), in combination with heart disease, health, risk factors, or drug abuse or especially weight. I want, from this moment on, to always and only, talk about him like this: great actor, great contributions to art, to the American cultural landscape, to pop culture, his portrayal of that most American of icons, The Mobster. I can’t learn any lessons from his death because it did not teach me anything I did not know (read this in Frankenstein’s voice: “overweight—bad, smoke—bad, exercise—good”). Just this once, can we honor an artist without making an example of the life outside of art? Do we always have to learn an important health lesson?

Always In Outrage Mode

Yes I’m a curmudgeon so, yes, I do tend to be a raw nerve, always ready to be annoyed.

My last post included the quote about “just because you’re offended doesn’t make you right”, and I’m finding that I need to take my own advice so late tonight.

Looking through the Tastefully Offensive blog, which I normally like (stupid pictures of dogs & cats!), I found Dina Goldstein’s “Happily Ever After?” series, featuring Disney princesses (Snow White, Cinderella, and all them) in various “real issues” (quote from the artist’s website). So we get Cinderella drinking heavily in a bar, Snowy with a bunch of kids and living in, uh, less than a castle, etc. And poor Rapunzel, sitting in a hospital, with her long hair sitting beside her, bald head shining, getting chemo. Yes, she has cancer, according to the artist’s explanation. (Now would be a good time to check it out, just Google her or the series name, I’m uncomfortable including a link).

I am basically fine with the work; I interpret it as a challenge to the Disney and the princess culture that seems to swallow young girls. My issue is with Tastefully Offensive, because they created a blog post featuring all the photos and titled it “Fallen Princesses”.

So my question is, how is getting cancer make one “fallen”? I suppose none of the princesses are really fallen anyway; this isn’t the 1950s where getting pregnant makes a woman fallen, and it is a woman’s right to drink up a storm in a bar. But the cancer one really bugs me, it insults me because it hints at that “blame the patient” thinking.

But the name of the blog does contain the word offensive. So I re-read the “outraged cancer patient/stop blaming the patient” comments I wrote at the bottom as I prepared to re-blog, and then I hit cancel.

Damn. I hate taking a taste of my own medicine

Ken Burns to Produce PBS Doc ‘The Emperor of All Maladies,’ Aims to Create a National Conversation About Cancer

Excited about this.

Vanilla Ice Lives Rent Free In My Brain Even Under Pressure

This post is a bit of a goof, some will find it funny like I do, but I promise it is all true…for better or worse! This IS my life and how I live it.

In the summer of 1989, I had just graduated high school and was trying to enjoy some free time NOT learning anything before going to college. But when I saw “Indiana Jones and the Holy Grail” that summer, I inadvertently learned a lesson I did not know would help me later in life when I got cancer. There is a scene in which Indy asks his father about the clues the father collected all his life to identify the location of the Holy Grail. Indy is shocked that his father, the foremost Grail expert in the world, cannot remember any of the details written in this book of collected clues, which of course has fallen into enemy hands. The senior Dr. Jones says something like “that’s why I wrote it down in the book, so I wouldn’t have to remember!”

For the already scattered mind, chemo brain is a bitch. By nature, before cancer, I was always dealing with a short attention span (think that stupid t-shirt that says something like “I do not have ADD….oh look a bunny,” yeah, I’m actually like that). Things like having a crawl on the bottom of the screen telling one news story while a talking head yammers on about something else, or OMG, the interwebz and its constant distractions, just don’t help. I’m sure many people, who’ve never even had to deal with cancer, get overwhelmed or over-saturated at least, with too much information to clog up the mind, because we are just having so much useless crapola fired at us all the time.

Post chemo, it’s like my brain is a net with very large holes, and only the really big tuna stays in there. Even worse, I suspect it erased some items that were formerly ensconced in my brain, and had been for years. I recently had lunch with a friend, a good friend, I was her maid of honor in fact…and she began recounting a certain drama that unfolded during her wedding back in 2000. Once she began giving me the details, sentence by sentence, I started to remember the drama, I remember calming her down during it, but I could not provide any of the details of it myself while we had this conversation. With each new detail she revealed, I went “oh yeah, that did happen,” like a lunatic or someone who just agrees a lot.

So I’ve adopted the methods of the senior Dr. Jones, and I write new pieces (of important) information down. My only obstacle nowadays is, of course, where did I write it down? Computer? Phone? Sticky note stuck to who knows what? Well, practice makes perfect, and I am perfecting the art of herding all of my Things Not To Forget notes into corrals of like items, where I can find them again later. And I’m still learning to never fall for it when I say to myself, “oh I’ll remember that!” I cannot even guess how many times I thought “I need milk, I’m going to the store, and will get it then, I’ll remember, no need to put it on the list.” Only to get to the store, buy ONLY the items on my list, get back home, and rediscover I have no milk. Then I kick myself, remembering and realizing the exact moment I should’ve written it down. I confess, I still sometimes fall into the “oh I’ll remember something so important, no need to write it down” trap, and get a cruel reminder each time: no, I won’t.

But I think I also subconsciously developed a system of retaining, examining, and then deleting information. For example, I recently signed up for a few breast cancer studies via Dr. Susan Loves’ Army of Women. I went through steps, including answering a set of questions to make sure I matched the criteria some weeks ago, and yesterday went to get the blood drawn for the study. I was asked many questions by those at the facility about the test (mostly to make sure that neither I nor my insurance would be billed for the procedure). As I struggled to answer the questions, I realized I had mentally discarded the info having to do with how I qualified for the study. Once I qualified, I thought I no longer needed it, I did not allow it clutter up my brain. I did not say this to the person asking questions, but quietly congratulated myself for only allowing just the necessary items to be in my brain (the info I was being asked was not really that needed–they just needed to stick me with a needle and fill tubes with my blood for pete’s sake), so I can at least try to function without being overwhelmed each day.

Here’s the catch, and the story behind the title of this post: I seem only able to delete certain pieces of information. How do I know this? Because anytime I hear the opening bars to that slightly-different-from-the-superior-Queen/Bowie-song, out of my mouth flies these words:

All right stop, Collaborate and listen
Ice is back with my brand new invention
Something grabs a hold of me tightly
Then I flow like a harpoon daily and nightly
Will it ever stop? Yo — I don’t know

Now, if ever there was an example of retaining unnecessary information, this is it. I’d even go so far as to say that I wish I could delete all song lyrics just to make room for important things, especially health info, so I would not have to repeatedly look up, well, most everything. I’m a major music fan, so maybe deleting all song lyrics from my brain is drastic; but good grief, Vanilla Ice’s “Ice Ice Baby” is one I retain? Really?! My inner punk rock girl is embarrassed. But on the other hand, the good news is I still know all of “London Calling” by The Clash as well.

A few years ago, Vanilla Ice was on MTV or VH-1, and he symbolically smashed a copy of the video for “Ice Ice Baby” so it would never be shown again. He shouldn’t have wasted his energy. His legacy, in the form of this ridiculous song, lives on in my chemo addled brain. Cancer took so much from me, but this, THIS, I still have. What will happen if I am lucky enough to avoid more cancer? In another 40 years, will I be in a senior home, possibly with memory loss resulting from old age, maybe even dementia, singing this song? Will I maybe not really have dementia, but the nursing home staff will think I do, simply because I can recite those lyrics? Can’t say I’d blame them, if I went around saying “All right stop, Collaborate and listen,” I’d think me demented too.

BTW, I should now mention that the reason why this music snob-alterna-grunge-girl knows “Ice Ice Baby”. My friend, the one mentioned above whose wedding I’ve forgotten much of, is still a big fan and loved, Loved, LOVED that song. Sometimes you learn stuff you’d rather not!

So perhaps I should find peace with this stupidly selective memory of mine. So what if I cannot remember every day/time of my cancer appointments, I can look it up. I was advised at diagnosis to keep a binder of all my cancer-related info, and I did. Lists of family history, of all drugs, dates of treatment, it’s all in the in the binder. I don’t carry it everywhere with me (trying to NOT be a cancer patient, even when others expect me to be one). So what if I don’t always get it right at the grocery store, I can go back and get what I forgot. I know the words to hundreds (dare I say more) of songs and I can sing along, and for me that is the best way I know how to keep the horror of cancer at bay.

And I wonder
When I sing along with you
If everything could ever feel this real forever
If anything could ever be this good again

“Everlong” by the Foo Fighters, lyrics by Dave Grohl, see more on him here

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