Not to Be Seen After Cancer Surgery

So a couple of days ago Rolling Stone magazine asked for folks to tweet them their rock tattoos. Well, hey, I got the ultimate rock tattoo: the Red Hot Chili Peppers logo on my breast where my nipple used to be, where my tumor started. So I tweeted said tattoo to them.

Do you think it was included in their favorite rock tattoos today? Of course not. No, they can show Rose McGowan’s nipples in her barely there outfit she wore while attending the VMAs with Marilyn Manson several years ago. So they have no problem with nudity. But I have no nipple—how is that nude or offensive? Why not show my tattoo in their list of rock tattoos?

I’ll tell you why.

Because as a breast cancer “survivor” I am supposed to just wear pink feather boas and march in parades, not be sexual—as if that tattoo, with my no-nipple status is even sexual in the least (didn’t that Janet Jackson at the Super Bowl thing a few years ago teach us that all is well until a nipple slips out?). Breast cancer “survivors” are just supposed to uphold that strong warrior image, not do something like get a rock tattoo instead of reconstruction, to you know, try  to look “normal”. No one wants to know or to understand the reality of breast cancer—no one wants to see the scars and what really happens to us.

Fuck you, Rolling Stone.

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Hamster Wheel

I think a lot about the risks and statistics regarding cancer. I think a lot about past post topics, like how folks in the kingdom of the well just want people who have/had cancer to move on already, just “get over” all the cancer. I don’t think about these things on purpose, they just pop up, unwanted. This post is about how these seemingly unrelated ideas mesh.

For those of us lucky enough to be former cancer patients, as in NOT Stage 4, our lives become about reducing risk of recurrence—diet, exercise, eliminating bad habits, taking up yoga/meditation/acupuncture (if you can afford the organic foods and things like acupuncture). Do all these right things and maybe cancer won’t come back. Then again, maybe it will.

What no one ever seems to mention (at least as far as I can tell) is another percentage or increased risk. The more former/current cancer patients in my social circle (in addition to or in place of those untouched by cancer? I don’t know) the more chances are I will hear bad news more often.  It is just the way the odds are.

Sometimes with the various blogs I read or the few folks I interact with on the interwebs, plus those IRL, it means I hear more bad news than average, meaning more sadness.

Make no mistake, my sadness is NOTHING compared to what is felt by those whose news I’m hearing.

All I’m referring to here is the fact that by hanging out in Cancerland even while I have no evidence of disease, I am still wallowing in cancer, quite the opposite of “getting over cancer” which so many of those untouched by cancer wish I would do: “get over cancer”—snort of derision.

Being in Cancerland is like getting on a hamster wheel I cannot seem to escape. Every time I turn around, someone else is getting bad news, because that is the increased risk that comes with knowing cancer patients. Maybe in 7 years I can exit the wheel—after I get through my next 2 years of bi-annual onco visits, after the following 5 of annual visits, and hopefully after that I never see him or another oncologist again. And after I stop interacting online with other cancer patients. But right now I run on that wheel like a furry critter, chased by cancer, Cancer, CANCER. Whereas before October 2010, cancer was hardly a blip in my consciousness.

I don’t know what to make of my increased risk of hearing bad news, either for myself or for others. In a conversation with Tumblr buddy Greg, he pointed out we have to celebrate the rare bits of good news, because they are indeed so rare in Cancerland. Most of the news for me has been good, but I find myself thinking often of those who keep getting hit with the bad news.

I’ve often pointed out on my blog that I am not sentimental, that I do sarcasm far better than true emotion. It is difficult for me to express words of encouragement or support or any of the other things those in pain need to hear. I think I never come off sincere, even when I am at my most sincere. So I tend not comment to others these messages, because I find words so inadequate at those most awful times. But I am heartbroken for all the sadness I hear about, I want the reason for the sadness to just STOP already. It really is that simple.

So to those reading who are Stage 4, and/or who’ve had recurrence, take this post as my message of support.

And I’m not stepping off the wheel today. I’ll keep my risk for increased chance of sadness high for now.

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 13th 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.

Another Unfortunate Repeat

It’s not that I don’t want to write new stuff, it’s that the same old issues keep rearing their ugly heads and my mind remains unchanged since I originally posted. I wish I could be convinced otherwise on nearly everything I write about here, but that almost never happens.

What is getting my goat, and many others’ I suspect is the DCIS mess and the even more recent mess about unnecessary mastectomy. The DCIS is annoying because of the rush to reclassify without having a concrete way to figure out if it will become cancer. But what really makes me nuts is that I learned of the JAMA thing via a NYT Wellblog piece and that little factoid was not listed until the 13th friggin’ paragraph. You know, where the average reader will miss it.

Sure maybe most women with DCIS will be OK, and maybe most women don’t need mastectomy. But some might. Once you’ve been outside the stats, it is really hard to trust even the most hallowed medical opinions. This trust for me has been recently re-shattered, and I may write about it in the future, it is tough for me emotionally right now. Until then, re-read this. 

Outside the Stats

I recently attended a breast cancer conference, intended mostly for medical professionals, but patients and caregivers were welcome too. Many aspects of this event warrant posts, but I’m going to start with an issue covered at the conference that is out of my area of experience. I know it is covered by many bloggers who are far more knowledgeable than I, having actual real life experience in the matter, whereas I am writing about something I did not do. I hope everyone understands that I am empathizing here, and hope no one thinks I do not have the right to discuss this topic.

I am talking here about women who choose to have a preventative bilateral mastectomy, for whatever reason—but especially for those who do it when statistics indicate the same cancer is unlikely to return.

At this conference I listened to an oncologist argue passionately against the increase in unnecessary mastectomies. She repeated evidence I’m familiar with, stats I’m not going to put here because I am sure readers know them; that bilateral mastectomies performed on women with no gene mutations, just a single, simple tumor in one breast, do not increase survivability rates. I could totally agree with this doctor. If you’ve read my About page and other posts you know that I opted for lumpectomy without reconstruction (pictures on the page called Fables of the Reconstruction). I did not get this so-called unnecessary surgery—I cannot handle anesthesia and avoid surgery as much as possible. Mastectomy in place of radiation was not presented as an option for me (I read other bloggers who went with bilateral mastectomy to avoid radiation), so my thought process was: get the least amount of cutting possible.

But where this doctor—and other doctors, and number crunchers—screw up is in the apparent failure to understand the reason women ignore this information: not fear of death, but fear of cancer, and fear of being the exception to the stats. Because even though I chose not to have “unnecessary surgery”, I understand all too well that it may seem not so unnecessary.

In the Q&A session the doctor was asked how she could or would convince a woman determined to have the mastectomy or a bilateral mastectomy when a lumpectomy would do. She stuttered a bit, and returned to the importance of having a deep, long conversation with the patient about treatment plans. I try not to judge this doctor; she is dedicated to making it clear that women no longer have to get the severe mastectomies that were once the norm. Surgery, technology—it all gets better all the time, so yes, treatment can make it possible that most of the breast is conserved, and it makes it less likely that the same cancer will return in the other breast.

That’s great, stats are great. But let’s think about to whom we are speaking. Most women think cancer could never happen to them (not the small percent of BRCA mutations positives, obviously). So when it does, how can they ever be convinced that it won’t happen again? Was the patient:

  • Diagnosed under the age 40—she’s outside the stats
  • Diagnosed with triple negative, or maybe just HER2+ (as in NOT EP+, the most common breast cancer)—she’s outside the stats
  • Fit/healthy/vegan/non-drinking/non-smoking—she’s the kind of person who has decreased the risk of getting breast cancer, according to nearly every piece of advice out there, and contrary to the OVERLY studied and reported stats, she got cancer anyway
  • A mother, who gave birth before age 30 (or whatever the magic age is for decreasing cancer risk)—she’s not in that group of women who delayed childbirth, another apparent cause of cancer, and she got cancer anyway
  • Diagnosed after getting a false negative mammogram—she’s heeded the advertisements that say early detection via mammogram is the best defense currently in use, and later, when the lump started to become more apparent that other tests were warranted, she got a rude awakening that the mammogram did not detect her cancer after all, in fact her detection is now late, not early—she’s outside the stats

So please don’t use stats showing the low likelihood of recurrence, or the low likelihood of dying from said recurrence, as an argument against mastectomy…on someone who fell outside the stats. Because a woman might be thinking, “yeah, so what, I’ll be in that low percentage that just gets the same cancer in the other breast.”

Even though I went the recommended way…this makes sense to me.

I know doctors have much on their plates and sometimes cannot think outside of the box. When my treatment was complete, my oncologist wanted to put me on the standard mammogram-every-six-months plan. When I asked to alternate with MRIs he started in with the stats, the standard care plans, blah blah blah, until I had to remind him that hey—mammograms are nice if they work. My first one ever did not. Why on earth should I trust them ever again? So, no thanks, I do not want to follow the recommendations or plans that these hallowed stats would indicate are best for the average breast cancer patient. Are any of us really average anyway?

Am I encouraging women to consider preventative bilateral mastectomies? NO. Am I suggesting women ignore the stats totally? NO. Do I think women should opt for the least invasive surgery possible? Absolutely. Do I support women who get this so-called unnecessary surgery? Unequivocally.

All I am asking for here is a little more consideration, and I’m suggesting there may be more to the picture than fear of death, fear of cancer. Yes, it seems some medical professionals and number crunchers are starting to get it…hey they aren’t just afraid of dying, but of getting cancer again, because hey, having cancer really sucks. Falling outside of stats is one of the many things that suck. It just seems with all the new pieces I am seeing in the news—about genetics being able to predict an individualized response to treatment, to maybe in the future develop treatments specifically for an individual—that recognition that not all cancers are alike, that many women are INDIVIDUALS who fell outside of the stats, should be more obvious.

Is this what women who opt for preventative (unnecessary in some minds, not mine) mastectomy think? If so, what kind of conversation needs to happen to alleviate the fears, to convince us all that we won’t fall into that freak percent of women who fall outside the stats….AGAIN?

I’m asking these questions—I do NOT know the answers and hope maybe people will talk about it. I’d like to be convinced myself…because right now I’m not. Help me believe. Help us believe.

P. S. I would also like to remind the doctors and number crunchers that while surviving cancer is great, certainly a worthy goal (yes, I am being snippy and sarcastic), not getting cancer is good too. Some articles I read only address the likelihood of survivability in the conversation about unnecessary mastectomies, all I can say is this: yes surviving a recurrence is great, but not getting a recurrence at all is better. Please keep that mind.

 

 

I’m Taking Back October

I know what you’re thinking—it’s only August!

BUT—I was in a store a few days ago getting summer-decorated ice cube trays (don’t ask) and seeing the usual Back-to-School promos and as I checked out, there was an impulse-buy display of single-wrapped candies, in Halloween wrappers. If Halloween candy can be sold already, I can talk about October.

Side note—you’d think with all the new fall merchandise, my sad little summer items would’ve had a lower price, but no.

I’m used to this rushing to the next big selling opportunity, er, holiday; I used to work retail, in clothing, for many years. Try getting a pair of shorts or a tee in my beach resort area in late August; can’t be done. But you can get a wool sweater! Which is dumb; I live at the beach in the mid-Atlantic where it is rarely cold enough for thick, cozy, wooly clothing. Working 8 hours surrounded by thick sweaters and down parkas, and then leaving for the day in wicked heat…ugh! I do not miss it.

Halloween Candy 2013

All that said, I admit I bought the fun candy, and yeah, I ate it. Halloween is over 10 weeks away—and I don’t care.

The truth is, Halloween is my favorite holiday. I love the dress up, the haunted houses, the watching of old timey (not so) scary movies, the candy—that last one alone is my favorite; if a holiday in which kids knock on doors and ask for hand-outs of sweets did not exist, it would have to be invented. My birthday is just a couple of days before it. Fall has always been MY TIME. October has always been MY TIME. I just celebrate all of it for a whole week on a sugar high. So I don’t really have a problem buying (and eating) Halloween candy in the beginning of August. Are all the merchants “pushing it” too early? Yep. Good—prolong the season, I say. I’m restraining myself from putting “Night of the Living Dead” in the DVD player and searching online for decorations and Halloween themed recipes as I write this.

If you read my About page, you can guess that all my love for fall evaporated in 2010, as I was diagnosed a few days before my birthday. One of the many oh-so-awful things about cancer is that treatment takes sooooo long, so the hurdles, like day of surgery, first day of radiation, or first day of a type of chemo round, are bound to coincide with some otherwise pleasant milestone day, be it birthday, anniversary, etc. I guess in some ways it is good that my absolute worst day in cancer, the day of my surgery, happened in late April. I’m not a fan of springtime; I’m allergic to all kinds of pollen and usually Benadryl-ed out of my mind. So, the memory of surgery is not tied up with an otherwise pleasant memory. I like the other seasons much more. Fall is my favorite, October is my favorite, and it just sucks I had to go through the testing and diagnosis in October. Just no other way to describe it other than that: SUCKS!

And of course on top of it all—say it altogether now—National Breast Cancer Awareness Month. When I first started haunting the internet on this issue last October, looking for the like-minded in my dislike of the pink ribbon circus, I remember distinctly reading one article, or blog, in which a woman talked about how much she used to love October and fall, and how that was ruined for her by the oversaturation of pink awareness. I wish I could remember where I saw that piece—it was the first one that made me start to feel better, because I knew then I really was not alone; not only was someone else sick of the pink ribbon, someone else didn’t like the way the intensified pink madness appropriated such a wonderful time of year, pouring perky pink over my beloved golds, yellows, oranges, and browns.

I am naïve, probably, in thinking I can “take back” October, as I claim here to be my intention. The onslaught of PINK will be too much, and something is bound to make me nuts, make me open my big mouth. I consider stocking up a number of dry goods so I don’t have to buy products emblazoned with that effen ribbon that are going to pop up on shelves any day now. Good thing I have a big Hurricane Preparedness/Evacuation Kit ready, stocked with the types of items that will soon be pink-er-ized. I can just use those if I start to run out (and there is no Sandy-type of threat). I gird my loins for the barrage of Pink events, for the endless, insultingly named ta-ta/second base/boobies-saving (not life) fundraisers.

Yeah, I know, it’s too early to borrow trouble. But, I repeat, the Halloween candy has arrived in the stores. Prepare.

source festishmode

I will do my best to ignore what sends me over the moon, to calmly correct untruths or half-truths I see/hear (1 in 8, early detection = prevention, need I go on?), and most of all, enjoy MY month, MY holiday, MY way. I will carve pumpkins. I will decorate anywhere I can. I will buy and eat and give away candy. I will make Halloween themed beverages. I will jump into piles of leaves like Linus, but avoid his error with the lollipop.  I will cheer the Ravens when the games are on. I will enjoy the cozy sweaters some days and run in the ocean in my cut-offs on others (if you don’t like the weather, wait 5 minutes…), probably chasing some water dog.

I cannot forget I had cancer, I can control so very little in my life, but I can do this.

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Posting this one again

I am re-posting something I wrote in January. While each age group has specific challenges in cancer, putting patients into boxes based solely on age can be problematic. As someone diagnosed under 40, yet branded a survivor once over 40, yet unmarried and childless, I just seem to fall through a lot of cracks. I feel like I have little to nothing in common with people in my alleged age group these days, and certainly little to nothing with those younger and older. Feeling lonely about that today. I guess I have felt that way for a while. I’m tired of not only the health industry making these boxes based on age, but groups designed to help patients doing it too.

The Age Divisions

When I was first diagnosed a few days before my 39th birthday, I concentrated on just the big picture of breast cancer, and I did not really pay attention to issues of age…at first. I was lucky to be treated at a facility that, despite its location in a small-town and rural area, was evolved enough to have a resource for young adults with cancer. A special support group was started for us by my friend, diagnosed a few years earlier with ovarian and uterine cancer. Joining support groups is so the opposite of my personality, but I am so glad I joined this one. It helped offset the annoyance I still felt going into the infusion room and seeing the looks of surprise given by my fellow patients as they watched me, not my mother, sit in that chair each time (even though I was the bald one, go figure).

As I progressed through treatment and began interacting with the others in our support group, I have researched a few resources outside of our little local circle for “young adults with cancer”. There are some cool things out there, like Huffington Post’s Generation Why blog, Stupid Cancer/I’m Too Young For This! Foundation, and First Descent.

But I wouldn’t be the Cancer Curmudgeon if I did not have a complaint. Generation Why is a play on “generation y”; naturally I am “generation x”. First Descent and events produced by Stupid Cancer are for anyone with cancer ages 13-39. Since I was going through treatment the entire time I was 39, and I worked while in treatment, I did not have much left-over energy or vacation time for anything like that. Hell, even the SCAR Project, which I admire greatly, had a limit of age 35 for participants. So does that mean, since I am 41, I am no longer allowed to be a sexual being, upset at the scar and lack of nipple that cancer left me? I do not think this, but it seems that “society”, or certain organizations, or who knows else, is putting these parameters in place, once again trying to fit cancer experiences into these little boxes.

Cancer sucks no matter what number of years you’ve walked this earth. Maybe people should not be reduced to age brackets when it comes to cancer. At 41 I should be at a certain place in a career, married with 2 kids? Nope, I don’t fit the “profile”. No kids…so the worries of informing my kids, raising kids, and worrying about their future without me does not apply. But I am single and would like to find a husband, and hell yeah, I am worried that my “damaged goods” are going to impact my chances of finding a one, a problem I see discussed in articles targeted to those in their 20s and 30s. In addition, I am certainly nowhere near retirement, in fact, am still searching for my “perfect” job. In short, I know what my particular challenges are, and there may be someone out there in the same or a similar boat, or maybe not. I’m sure lots of patients cannot imagine facing my set of circumstances, the same way I am baffled when I read other bloggers’ posts of trying to go through college while in chemo, some without family support.

Look, I am not poo-pooing these resources I’ve mentioned, I am grateful they exist. I sort it out as I research & read, and just try to take what applies to me and move on. I know that the medical community and these various organizations have to create these age brackets in order to do the testing, compile data, and create their target markets. I especially would like the medical testing industry to expand their vision to include testing and results for each and every age bracket, so treatment can be improved and prevention discovered. It’s all about the stats and the odds, I know.

I just want everyone, especially the number-crunchers, to remember that the one common thread in cancer patients no matter the age is that we all want to survive and live well, and that there is a person behind each number or stat.