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Being Disturbed Calls for Another Re-post

That recent article about rejecting the breast cancer warrior role (written by a doctor whose wife died of breast cancer) has provoked some interesting reactions in social media. I’m actually kind of annoyed by BOTH the supporting and protesting reactions. I’ll write a post soon explaining what I mean by that. In the meantime, I realize I still have the same strong convictions about this issue as I did well over a year ago. Here is what I wrote then. Hope to have a new post about it this weekend.

Take the Mythical Image of the Strong Warrior Breast Cancer Survivor And Bury HER Once & For All
Posted on March 28, 2013 by Cancer Curmudgeon

Author’s note:
If you are a breast cancer “survivor” who embraces that ideal image–the pink products, the racing for the cure, etc.– I am truly happy for you. I mean that sincerely, without my usual dose of sarcasm. And just as sincerely, I beg you to stop reading this post, you will probably find it offensive. As nearly always, there will be foul language, because that is how I speak.

This post is for the ones who got breast cancer, and went into it doubting, or maybe at first embracing, what I shall henceforth refer to as The Image. It is for those of us who at some point realized we could not live up to The Image. And for those patients lost and unsure, feeling set adrift, away from the pink anchor. This post is for them–you–us. -anotheronewiththecancer, AKA cancer curmudgeon

Why do I propose this burial? Because I think this mythical image is dangerous. I’m tired of hearing or reading about women who feel they cannot live up to The Image; becoming depressed, maybe suicidal, because of the way this pressure made them feel. I’ve encountered this sort of despair a few times recently, and enough is enough.

I’ve used this comparison before, I think. Let’s say a gun is pointed at your head. Maybe you get shot. There will be blood, there will be pain, and you might die. At the most basic level, cancer is just like that, a gun pointed at the head. You get cancer, you will bleed, you will have pain, and you might die. Most people, when having a gun pointed at the head, would shit themselves. Breast cancer patients however, are expected to run a race, smile, and fight, fight, fight! Like a good little girl. Whoops did I just say that? So when these women cannot live up to the expectations, not only do they feel awful because they have cancer, but they feel like they are letting EVERYONE down, especially those who’ve supported them, but also the world at large that expects certain behavior from the breast cancer she-ro.THIS IS WRONG.

I get it, there is a desire to fit in, to find support somewhere, and the smiling pink parades look inviting. Some women find solace in the support of a sisterhood. (BIG ALERT: I’m an only child and glad of it, so the notion of sisterhood baffles me.) We all want to belong. One of the many problems is, The Image pretends to invite everyone, but it does not; it is actually quite exclusive–I’ll stop short of using the d-word. Dissenters and doubters with breast cancer are ostracized. Don’t believe me? Read Barbara Ehrenreich’s Bright-Sided: How the Relentless Promotion of Positive Thinking Has Undermined America. The first chapter is Ehrenreich’s description of her breast cancer experience, called “Smile or Die: the Bright Side of Cancer”. Some of the incidents she described were all too familiar (hint: a breast cancer patient suggested Ehrenreich get professional help for her “bad attitude” I got similar advice while making what I think is a valid point on Huffington Post). In my humble opinion, it should be required reading for ALL newly diagnosed breast cancer patients.

And notice I only mentioned breast cancer patients. But even not all breast cancer patients are invited, I’ve learned by reading blogs. I’ve read some ugly stories about the ones with Stage IV getting shut out of the “support system.” But of course, they are the awful reminder that breast cancer is not totally beatable, as we’ve been led to believe. “They” can never fit into the The Image. *I use they in quotes not to reflect how I feel about those with mets, but to reflect how I believe The Image machine views those with mets.

Guess who else is not invited to the pink party? Patients with ANY OTHER KIND OF CANCER. I hate that. Why are they excluded? That is a can of worms to open on another day, another post. I will offer this thought to ponder: is it because we just expect them to die, and by that I also mean get out of our sight, as an embarrassment like the mets breast cancer patients, because they cannot beat cancer and fulfill that stupid warrior stereotype? Ask your nearest ovarian or pancreatic cancer patient, they can tell you what’s up, in language you may not want to hear.

I knew pretty much from the get-go that I would not live up to The Image. For those who’ve read some of my other posts, it is pretty clear I was never the cheerleader-joiner type. So of course I’d be the glowering dissenter in the corner. Honestly, I did try to be a good patient (not just a good breast cancer patient). I followed orders, took tests, showed up at appointed times, eventually joined a support group. As treatment progressed I learned some hard lessons about following doctor’s orders, like the need to challenge medical proclamations handed to me, because mistakes were made, but that is another post.

I think I rejected the Pinktober stuff even before I was diagnosed. As an alt-punk Gen-Xer, I hate it when I am being sold to, and tend to look for the lies beneath all shiny images, and I knew The Image, along with the pink crap, was being SOLD to me. These days, as a breast cancer patient, the Pink just infuriates me, rather than simply annoying me on an intellectual level.

When some acquaintances walked in a pink event in my name, I was gracious, I love the little pink rubber- duckie they gave me, and I will never forget their kindness. But I won’t EVER walk or run, I won’t buy pink crap. I don’t need to go into the reasons why walk/runs are not effective fundraisers, nor need I explain that cancer simply cannot be shopped away. Other bloggers have done that, and if you’re still reading this post, you already know this.

That said, this post is not me saying, “Oooo look at me, I’m so clever and strong to have rejected The Image without ever falling into the trap”. On the contrary, the marketing, the peer pressure, in cancer communities is so prevalent, it is amazing anyone ever questions anything. No, this is me defending the ones–us–who don’t want to, or cannot fit into this distorted ideal, The Image. I mean that with more conviction than nearly anything I’ve ever said in my life.

I’m not going to go into how The Image developed, there are some good books out there about that. I am aware the advocacy movement started as a way to support women’s health, bring breast cancer out from the whispering shadows, so women could demand better treatment. This is a good thing. But in a few decades, the pendulum swung completely to the other side, to the point that we shout about breast cancer from the rooftops, and there seems to be subtle pressure to be damn near proud of having it while sporting pink clothes and bald heads.

Of course I’m glad breast cancer is out of the shadows, but in keeping with the insane American ideal of “if a little of something is good, a lot of it is better”, now it has gone over to the ridiculous. We need to bring the pendulum back. We need to slow down, find the middle ground. No more ideals, no more she-roes, survivors, warriors, no more hollow “you’re so brave” compliments. I’m no she-ro. I am no warrior. I am not brave, I screamed and cried raged often enough I assure you. I am simply a woman who found out she had a life-threatening illness, made logical, somewhat informed decisions to eliminate that threat, and tried to deal with all the emotional crap that came with it. I made these choices because I wanted to live, not die. It is that simple. Don’t ascribe these words and their hollow meanings to me and my experience, it is not your right to do so.

So to those breast cancer patients, or survivors or whatever you call yourself, who are struggling because you don’t think you are “doing cancer right”, I doubt this silly post will ease your pain. I can’t remove the pressure of The Image from your back, and maybe no one can do that but you. You will need to be the one to take this mass delusional Image and chuck her out the window, where she belongs. The only way The Image will cease to exist is if enough of us ignore her.

I am sorry if I come off harsh. A lifetime of being unable to conform to much has made me a bit rough around the edges at times. The cool kids or the mainstream (in breast cancer, in life) tend to be intolerant of “the other”, and since I usually fall into that category, I cannot help but be a bit snide about being an “outsider” all the time. I tried not to criticize or judge, but at times I feel criticized and judged by the mainstream pink community and it is hard not to reciprocate. I am ashamed of that because I am truly trying to be a better person.

I do not have any proposals on how to solve what I think is a problem (and yes, it is a problem if someone goes through cancer treatment successfully, and then wants to commit suicide for being unable to live up to The Image–no matter how you spin it). As usual, I am the jackass in the corner pointing out what is wrong without much of a constructive suggestion. I don’t have a degree in Sociology or Anthropology, which is probably what is required to understand the nature of the cancer subculture. If I could lead an army of like-minded folks down the highway in October, destroying every hint of pink I saw, I would do it, but I doubt that will ever happen. All I can think of to do is reject it for myself, and offer a helping hand to anyone else who wants to do the same.

From Mopey to Dopey to Sleepy

Wow. It’s been over a month since I last posted, or even wrote. Last post, I wrote about how my ongoing recent health issues had sent me reeling back into my fresh-outta-treatment panic and blues. I’d started blogging in the wake of those initial post-treatment blues two years ago, to help rid myself of them. That had worked for a long while, and I was getting much better. But this regression motivated me to do the opposite. I just felt like any post I would write in the past month would just be infected with my mopey views.

So I chose to just try and do a little self-care. I took medications and started an exercise (stretching) routine to prevent muscle spasms and numbness. I figured out that the dizziness was caused by my old allergy medications suddenly failing to work. I had to get new ones, and adjust. So I was doped up for a little while and of course, some sleepy side effects ensued. I slowly started to feel better, to the point I actually had several consecutive days mid-July of total well-being, actual feeling normal (well, post-cancer normal wellness, anyway). I planned to get back to blogging, but first I wanted to take time to make up lost work time, lost fun time, lost beach time.

Then last week I got a wicked summer cold.

It is just endless—like my body insists on being sick. And I am sick of being sick!

All this time I have indeed been reading others’ blogs and trying to keep up at least a little bit, even if I didn’t have the mental energy to say much. I’ve been thinking and pondering. I always have opinions and thoughts, and hopefully, I’ll get my act together enough to return to blogging soon.

Until later, then.

The Line

I, and many others, have often spoken of the fears that haunt cancer patients upon completion of treatment. Every little ache, twinge, hangnails even, can induce great fear in a cancer patient: “Is this a sign? Is this cancer coming back?”

For the most part, I’ve been capable of knowing when something is just a normal issue, not a signal that cancer has come back. The first time I had a little 24-hour flu after cancer, for example. It was weird, to have such a normal episode of nausea and vomiting not related to chemo. (Unluckily for me, this episode happened right after having a large Thanksgiving dinner—geez, of all the lousy times to get sick…) I know when I’m having allergy problems rather than a cold; I know that even though I’d never had a UTI prior to last fall, I knew it was a simple thing. I felt pretty secure that none of these minor illnesses signaled the return of cancer.

In short, I’ve remained on this side of my imaginary line that divides normal illness or signs of aging versus abnormal symptoms that indicate I need an oncologist. That is not to say I am or ever will be “over cancer”, I know the risks, the likelihood of recurrence and that I am not “all better”—unlike those folks who like to tell about their friend of a friend who had a little cancer that one time and now she’s “all better”.

But I have lost sight of the line lately. Or maybe I keep jumping back and forth over it, or I’m straddling it.

When I had my suspicious mammogram last March, I found myself back in that place of cancer terror, the place I occupied upon diagnosis. I had a brief reprieve after the MRI proved the suspicious area to be scar tissue and not a tumor. I breathed easy, thinking I’d dodged a bullet this time. But every health blip I’ve had since then has sent me over the edge—especially since it all seems ongoing and whack-a-mole; each time a symptom is quashed, a new one pops up.  All remains unresolved.

Given my history of medical professionals misdiagnosing me (my first mammo was all clear when really I had a giant cancerous tumor; I was told I had shingles when really I had a staph infection), it is hard for me to trust my GP when she tells me stress has made my muscles contract to simple muscle spasms causing my limb/finger/toe numbness. How do I know it is not something more sinister? If not cancer, perhaps something just as serious and catastrophic?

How do I know or trust that that my issues are not something more serious? I’ve lost sight of the line—the line that says trust the doctor that it this problem is not serious versus advocate, push, ask for tests that prove my worst fears.

I’ve been living in that dark hole of fear and terror lately. I’ve not been communicating or writing much, I just cannot focus when my mind is busy contemplating the horrible possibilities. I don’t like being in this place. I thought I had my post-treatment blues, my walking-with-fear-of-cancer’s-return in hand. But I do not.

So back to the drawing board. Back to counseling. I’m angry at myself that I took one step forward and have now taken several steps back.

Because Sunday

Because Sunday

Last year National Cancer Survivors Day was over before I even knew it existed. I kind of shrugged it off. This year I was alerted to its approach via social media. And this year I’m decidedly not enthused about it.

I see the website, with tidbits like: “On Sunday, June 1, 2014, cancer survivors across the globe will unite to show the world what life after cancer looks like.” (Aside: that confuses me—is it “national”, which nation, but the around the globe quote seems it should be called international day????) Or, the tidbit mentioned on other blogs that the day is show life after cancer can be better?

Admittedly, I’m in a very bad mental space lately. Since March, I’ve had one health issue after another, starting with a suspicious mammogram that led to a relieving MRI that showed no evidence of recurrence-at least in my breasts. But after that it’s been other health issues, drugs with bad side effects, or maybe not—still trying to figure out what is going on with me. Meanwhile, I feel crappy, and I am torturing myself that all this indicates cancer is back somewhere else. I felt kind of “blah” the summer before I was diagnosed. And yes, I had that clear mammogram a mere 5 weeks before I was diagnosed with a big ass tumor that first time. So sorry, but I don’t have much patience in this process of trying to figure out my health problems without considering what I fear most.

So I’m not up to showing the world what life after cancer looks like—for me, it has been just riddled with fear, anxiety, and panic. Even if what is happening to me now is not recurrence, the fact I’m having such a difficult time tolerating or resolving new, other health issues just shows how much cancer has damaged my body—made me weaker and not as able to shake off what someone my age who has not had cancer might be able to do so easily. No, I don’t think the folks behind this event want me as a poster child for what life after cancer looks like. I wish I did look and feel like those smiling people in the survivor pictures, swimming, being active, oddly resembling ads for feminine hygiene products. Oh yes I went there.  I may feel terrible, but I can’t stop my sarcasm.

As for that word survivor, once more for those in the back row—I do not consider myself a cancer survivor until I die of something else. I do not use it because my friends with Stage IV are not “losers”, and they are too often shut out of the rah-rah survivor discourse. I’ve written about this, and other cancer labels and language many, many times, so I’m putting links below to some of the ones I remember—I’m sure I’ve written about it in other posts that I’m just not remembering.

One final, parting shot thought: I’ve been merely re-posting old pieces lately. Yes, I’ve been too tired and feeling too crappy to write much. But that is not all. I find that I still feel mostly the same about all these issues. My mind has not changed too much. I used to think if I just kept writing and talking, the conversation about cancer could change. I no longer think that. I merely hope that at some point, the world will see there is not one single, happy story of cancer, there is not one “THE way” to do cancer (I’m thinking about that TV news person who introduced the clip of the dancing mastectomy woman by proclaiming her dance as “THE way to do cancer, folks”). At some point, I hope society will understand that there are thousands (millions?) of cancer stories out there, and no two are alike. And none of them are wrong. Taken together, they are the real, whole story of cancer.

What Do I Call Myself?

The Other Other Language of Cancer

Why This Smart Ass Does Not Kick Ass

The Curmudgeon Formerly Known as Cancer Patient

Remedial Course

Read something in the blogosphere that made me remember writing this. Might have to repost now and again until at least the media gets it right–internet “experts” never will.

Somebody Needs to Buy These Media People a Dictionary

Posted on March 15, 2013 by 

So I’m watching GMA Friday morning and there is a brief segment about this co-host on Dancing With the Stars, Brooke Burke-Charvet. Now, I do not watch the Dancing show, know nothing of this woman, and have not bothered to look into her story on the internet, not interested enough. My complaint is the way the dark-haired female reporter, and her producers at GMA, presented the info. This Burke-Charvet woman has or had thyroid cancer, and is doing some promo thing on some health magazine about how her cancer scare means she no longer worries about looking young, and she wants people to live healthy, exercise (the usual crap), and get check-ups with doctors. Now, I do not know if it was Burke-Charvet who actually said people need to engage in preventative practices by getting annual check-ups, I will give her the benefit of the doubt. But certainly the GMA reporter said that the idea behind the campaign is for people to prevent health issues, like cancer, by going to their doctor. Apparently this Burke-Charvet has always lived healthy and had no symptoms, and it was on a routine visit to her doctor her thyroid cancer was detected.

In what universe is early detection equal to prevention?! Going to the doctor and learning she had cancer did NOT prevent cancer. She already had the cancer, therefore, it was NOT prevented. It was detected early, and that is great, but it was not prevented no matter how the media spins it.

This is the kind of thing the media does that drives me crazy. Throw around words like “prevent” so people feel in control or empowered. How many times will I have to write this? Some things are out of our control, if cancer had a motto it would be “shit happens”. This idea we can control every single thing that happens to us, cancer included, is just extreme hubris.

It is important for the media to get this language of cancer right. By suggesting to viewers that “prevention” is within our grasp just by getting regular medical check-ups is damn near negligent. I repeat, if a regular doctor’s visit (as in a visit not instigated by symptoms), reveals the presence of cancer, that is EARLY DETECTION, not PREVENTION.

The media needs to pull their collective act together. I am especially annoyed this segment was on GMA, a show featuring a news anchor with well documented bouts of cancer. She and her cast mates should know this difference all too well. Shame on you, GMA.

Agitated

I want to write a thoughtful post about all that is happening with my current issues, but I am unable to do so right now. In a nutshell, I have “some kind of cystitis” that is causing a high, almost unmanageable urge to urinate, VERY frequently. This has been going on for over two months and I’ve been bouncing around with the doctors, and dealing with scanxiety (see past few posts). A frightening episode with ultrasounds of my kidneys and bladder yielded “good” results. As in, no tumors (yay), and everything seems normal (not abnormally retaining urine). That’s great, except I still have a problem, and it seems undefinable, at least according to these imaging results. I’ve been informed that these “good” test results do not necessarily mean I do NOT have cystitis.

In the meantime, while going through the tests and waiting for results, of course pharmaceuticals were prescribed. Of course insurance would not approve the doctor’s first choice, and I’ve been forced to jump through hoops. Nothing new, that happened a bit during cancer treatment. But the drug that was finally approved came with dreadful side effects. I have been suffering from these for the past week and it has been as bad as the effects of chemo, maybe because I did not expect them to be so drastic. Dizziness, blurred vision, heart racing (although that one is not listed), weakness…the list goes on. The one that “got” me though, was: agitation.

Yes, I’ve been very agitated, which is why I’m late in getting this post out, and why it took some time for me to respond to comments on recent posts. I was too weak/fatigued to spend energy on anything but working. And I still do not trust myself to communicate in a level-headed way, even now.

Let me put it this way, the side effects were so extreme, I was sure cancer had returned, everywhere in my body. Despite an all clear MRI two months ago, I’ve been convinced that a giant tumor is lurking in my breast, under the scar. I’m convinced cancer has spread to my brain. I’m a bit calmer now that I understand that I’m agitated because of the drug, but I’m still a little “off the rails” even now. I was on the drug for a week, and I ceased taking it a few days ago—a choice I made even before I understood all these side effects—I stopped taking it to rule out the drug as a cause of what was happening to me. I’m glad I had the presence of mind to do that, and looking back at how bad the beginning of this week was, it is amazing I did have that presence of mind.

I’m still not “right”. I still have upcoming doctor’s appointments….and the original problem of urgency and frequency has returned. My frustration level right now is VERY high. So I’ll stop this post here, because I can tell, even just writing this, that my mind is still not right. I only wanted to let everyone know, given the fears I’ve written in recent posts, that at the moment, they seem unfounded.

But my problems are still not solved, so my quest continues.

Pitfalls of Residing in Cancerland

There have been a few pieces of bad news that have crossed my line of vision lately: recurrences and death. I wrote this a few months ago about the pains of remaining in Cancerland, where the likelihood of exposing oneself to such pain is much higher.

Hamster Wheel

Posted on August 17, 2013 by Cancer Curmudgeon

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.

 

A Cancer Free Mother’s Day

A/N: This post will address my discomfort with what I perceive as the way Mother’s Day is now linked with breast cancer. I’ve read a few blog posts about mothers recently, and I think I’m in the minority with my discomfort at this association (again, maybe this is just what I see). I can only speak from where I stand: a woman with breast cancer who is not a mother, whose own mother does not yet have breast cancer, and who was my primary care-giver during cancer. I realize several bloggers I read had mothers who died of breast cancer, and as I do not, so I can only empathize. I hope this post communicates empathy, and is not tone deaf.

That said, I will try to be delicate, but I still think this post will offend some readers. Please proceed with caution, or maybe don’t read.

Later March through mid-May now mirrors October for me, in my Mid-Atlantic American resort area. I cannot get down a street or open a local paper without seeing a poster-sized advertisement for some race, walk, softball game, or other activity to benefit local breast cancer organizations.

In many ways, Pink invading this time of year makes more sense than October. Pink is often associated with springtime. The days are usually warm—great for races or outdoor games. Plus, so many harvest/back-to-school/holiday season events happen at the end of the year, I suspect moving breast cancer races to springtime means less competition from those other events (this may only be true in my region, I don’t know).  As I wrote about wanting to reclaim October last fall, I wondered why October is designated as Breast Cancer Awareness Month; I thought a spring month would be more appropriate. I think I used good ol’ Google, and never got a full answer. Or maybe I’m just being wishful—I hate Pink painted all over my beloved golds and oranges—so a BCAM move to a spring would be a relief in my view. *My apologies to those reading who are not in the Northern Hemisphere, for my American seasonal POV here.

Some of the shenanigans associated with the local fundraisers this year are the topic of maybe another post, but I’m grappling with another painful area right now. What is bothering me is the linking of Mother’s Day to breast cancer.

I noticed it last year, in March, when I got a post-card from a local breast cancer organization regarding a project of sending photos and/or stories about Mom. Of course, there was also the suggestion of a donation in mom’s name for the holiday. I got the same card again this spring, too. As far as I could tell, the moms to be honored need not be breast cancer patients, I think—but to be honest, I did not look too deep into it; I found it too disturbing. My quick scan of the website led me to a donations page, and another suggestion of donations in anyone’s honor for any holiday—including Father’s Day. I admit I was impressed by that—finally an acknowledgement that men can get breast cancer, however indirect that acknowledgement. Donating in honor of someone for a gift can be positive, if done wisely and so long the honoree’s charitable giving preferences are respected. But only a donation in honor of Mother’s Day warrants extra special attention, I see.

So it isn’t the money that is necessarily bothering me (too much) in this situation. Perhaps this post is me trying to put my finger on just what is bothering me about the fact I keep seeing the words: mom/mother and breast cancer together on one page so much lately.

There is a subtle whiff of marketing of course. I understand non-profits need to seize every opportunity to make money. It’s just, why the automatic leap that seems to go like this: mothers = women = women’s issues/health = breast cancer, so suddenly the holiday becomes all about breast cancer? Perhaps my view is too narrow here; I did not investigate organizations for ovarian or any other cancers, to see if there were campaigns to fundraise to honor one’s mother.

But it wasn’t just local breast cancer support organizations that seemed to link mothers to breast cancer for holiday festivities—local and national media linked the two as well. I opened the Sunday paper, and the magazine insert featured Christina Applegate and her mother, both famous breast cancer survivors. Why not feature them in October? Why not feature, I don’t know, a successful mother and daughter-owned business—as in, something women achieved rather than had to deal with? Or a mother and daughter both with any other cancer? I mean, any gynecological cancer would’ve been appropriate for Mother’s Day, right? Or are those diseases not common enough to suit everyone’s needs? Well, that argument doesn’t work—I’ve pointed out enough on this blog about how awareness advocates for diseases such as lung cancer and heart disease use breast cancer to point out how these diseases harm more women than breast cancer (Want Attention? Just Say Breast Cancer). So why no cover story of a mother and daughter team taking measures to prevent hereditary heart disease? As more intelligent women than I have long pointed out—why is breast cancer a stand-in for all women’s health?

I turned on the local news that night, and a woman who overcame a number of odds—widowhood, breast cancer—to return to school for her degree was featured. The cynic in me wondered if they started by looking for this news story by researching local “older” college graduates who were moms, or did they start at breast cancer support organizations to find her.

Is having breast cancer a prerequisite to be considered a mother worthy of honor? Is breast cancer the one and only threat to health and well-being of mothers all over? Is overcoming breast cancer the only achievement women can be publicly lauded for? Because that seems to be the message the media gave out that day, in my view.

Again, I cannot stress enough that I do not want to be insensitive here. Much is written about hereditary breast cancer—because breast cancer has that family link, even for this Cancer Curmudgeon, so it is natural for this mother-daughter + breast cancer topic to be written about. And most of the bloggers I read acknowledged the deaths caused by all hereditary cancers.

So maybe what is making me uncomfortable is this.

My mother’s mother had breast cancer at the very end of her life, over a decade ago. It went untreated because she was in the process of dying of heart disease. Then in 2010, my mother watched her youngest sister, that she cared for as if she were her own child, get breast cancer around age 50. A few months later her own, only child (yours truly), got breast cancer. My mother has had enough of breast cancer. I know there is no such thing as a trade off in the world of cancer (wrote about this a long time ago)—just because everyone around her has had breast cancer does not make her exempt. And that is what frustrates me so much. I was constantly barraged with subtle or direct messages over the past few weeks that seemed hell bent on making me understand something I am only too aware of: mothers get breast cancer. Breast cancer is a clear and constant threat to us, and we cannot ever get away from it.

My mother should be honored because she had to, and still has to, put up with my whiny, angry, annoying breast cancer patient self. Hell, my mother should be honored for putting up with the annoying person I was before breast cancer. So I honored her by shutting up about breast cancer all day on Sunday.

I’ve been tied up in knots about writing this post. I know that many women have had mothers and/or grandmothers die because of breast cancer and I do not mean to imply that their pain should be ignored—of course Mother’s Day is difficult. But it is also difficult for anyone whose mother is no longer alive for any reason; something a friend’s story reminded me of sadly last Sunday. I could not help but wonder if there were adult children out there, again resentful of breast cancer being shoved down throats on that day just as it is in October. I mean, it only stands to reason that this would happen, given the backlash to breast cancer that is happening in other cancer organization campaigns (Pancreatic Cancer Action PSA, anyone?).  Are other children perceiving a message that their own mother’s lives were somehow less significant because they had/have other cancers or challenges? And I very much resented the fact that a day meant to honor and celebrate, for me, was under a cloud of cancer, the same cloud I see nearly every damn day.

So I took one day off from cancer. And I want an end to ALL cancers. I’ll take that any day, it doesn’t need to be saved for a holiday.

 

Post-Treatment Depression

I’ve been seeing a few graphics and posts on the internet about May being Mental Health Awareness Month, and a few blurbs mention cancer’s impact on one’s mental health. These pieces reminded me of how lost and down, maybe even depressed, I felt after I completed treatment. For me, the worst part was, and still is, the anger I had/have about cancer. I wrote this post last summer about an epiphany I had, at which point I began to improve a great deal. I continue to improve thanks to the therapeutic aspects of writing it all out on this blog.

That said, I am certainly not suggesting my method of getting better is one that anyone else should try. In fact, I’d say the opposite. However, the past year of dipping my toe into the realm of social media tells me that I am not alone with many of my views and feelings. So I re-post this for anyone who is new to cancer or the aftermath of cancer, and finds him or herself in the place I once occupied.

This post reflects one of my most adamant, non-negotiable views about cancer. Cancer patients must be allowed to feel whatever they feel—even if those feelings are considered negative. NEVER, EVER just tell a cancer patient to think positive to deal with cancer. It just adds stress, and in my case, I felt blamed. I don’t want any other cancer patient to feel that, ever. One of my turning points to accepting my feelings was reading Jimmie C. Holland’s “The Human Side of Cancer” (chapter 2, specifically). Another turning point is described in this old post.

I’m Allowed

Posted on July 29, 2013 by Cancer Curmudgeon

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.