Thanks

Thanks for all the kind reactions to my most recent post about a very touchy subject. I go back and read what I wrote and it is not my best, most clear writing. I’m amazed anyone can understand what I’m trying to say! Too many long sentences and junk in parentheses. All signs of how unsettled I am with the topic, how angry I still am about certain aspects of cancer. This was one the most difficult posts to write. I worry that I disagree with some of the most revered voices in the breast cancer community and while I admit to being a curmudgeon, it isn’t always fun to go against every damn grain. But I pledged to myself to be honest about everything in CancerLand, so that is all I am trying to do.

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What Is My Psychological Damage?

Warning: controversial topic, I’m not taking much of a stand, just trying to work out my thoughts and feelings here, so be gentle in comments to me and to others.

“’Cause I’m just a girl, a little ‘ol me”

-“Just A Girl”, by No Doubt

“Oh I’ve had it up to here” Gwen Stefani sings in that old song. What I’ve had it up to here with is the use of “needless worry” and similar phrases as a reason to advise against screenings (annual or additional), or a reason to not inform women of breast density.

As I’ve said many times on this blog, I am not in the “a mammogram saved my life” camp—in fact that is one of the clichés of cancer driving me crazy lately. I hate the hyperbole of the phrase. I actually do understand to a degree when advocates point out that mammograms are not reducing the number of breast cancer deaths. But I have reservations about eliminating routine screening, and BIG reservations about not informing patients about density and potential problems, regardless of whether it can impact them or not. But whenever the needless worry reason is invoked, I stop reading/listening, and therefore am not absorbing the information advocates are trying to present, and I am not persuaded.

Don’t get me wrong—cancer is an emotional topic, like any illness or anything that severely alters life. And I have an emotional reaction to the emotional issue raised. I’ve started this post so many times in the past few months. I see yet another article about the uselessness of mammograms or over-diagnosis and start writing, but my emotions get in the way of making my points. I’m trying again, and hope I’m articulate. It seems this debate pops up every few months—whether it is this or that study, with whatever slight difference (I’ve written about that before).

I’m not suggesting worry and other emotions should not be brought into the discussion—my problem is the tone in which they are brought up, and the fact that the anxiety is used as a reason to discourage screenings or informing patients of density, right alongside data and stats showing mammograms don’t improve death by cancer rates or extra screenings won’t help those with density. I’m hearing: “tests are scary, so don’t worry your pretty little head”, and for me that cancels out the numbers and facts proving screenings are not as effective as we’ve been led to believe.

In many ways I’m the poster child for the ineffectiveness of mammograms and why routine screening should cease (or at least my cancer experience is on the poster). Propelled by my aunt’s diagnosis of Stage 3 cancer in August 2010 (and her experience was complex; including numerous tests the previous year, and a wait and see suggestion, but hers is not my story to tell), I asked for a mammogram at age 38, September 2010. I got an all clear, and 5 weeks later with an inverted nipple, I learned I had Stage 3, an oblong tumor approximately 5×6 cm going from nipple to almost the chest wall, with some spread to lymph nodes (that spread had not been made clear to me back then, I recently learned about it). I get very tired of the word “over” (as in over-diagnosed, treated, tested), and I think wow, I was UNDER-diagnosed. But really I was misdiagnosed. A false negative, I guess. So, in short, routine screening—not that great for me, and I have no call to defend it.

To be clear, it was not an issue of the technology not displaying the tumor. That old analogy of screening dense breasts being like trying find a snowball in a snowstorm also fails in my case. For me, no storm, only snowball. The tumor was dismissed as a density by the human looking at my images (my oncologists punt on this—they both say I have average age related dense breasts—not actual dense breasts), but I was not informed. I did not even know the radiologist wrote on a report not given to me that he saw a dense left breast until I confronted my oncologist in 2013, long after treatment ended. Did the radiologist hear all the rumbles about over-diagnosis, and all the needless worry, and decided it wasn’t worth having me worry my pretty little head about it—when clearly I had cause to worry? Was this debate raging in 2010? How the hell should I know? I didn’t read this stuff back then, I thought breast cancer was an older woman’s problem. And even then I figured I’d be one of the other 7, not 1 in 8 (yes I now know I was actually 1 in 233 or whatever other large number applies to the 30-39 crowd, I’ve seen a few conflicting things). In short, while I was trying to be proactive and dutiful, I did not really have any concerns. But I am sure some would consider me a victim of the awareness campaigns’ fear-mongering practices used to drive women to useless mammograms, simply because I went.

The eliminate screenings advocates would point out that not being informed made no difference to me. I developed symptoms, I sought medical attention, and nearly 5 years later, I’m still here, bitching about everything. I was saved 5 weeks of worry—gee whiz, aren’t I lucky (yes being sarcastic).

The recent Newsweek piece says, “Not every woman with dense breast tissue should be subjected to additional screening tests, which can be psychologically damaging and contribute to unnecessary health care costs…” and I just cringe. The latest to invoke the “needless worry and anxiety” cliché, it just sent me over the edge. I have a clear memory during the first few awful infusion weeks that included getting the Red Devil. A woman decided to tell me about that one time a worrisome mammogram forced her to go back for a biopsy, how awful those days of waiting were for her, until thankfully she learned she did not have cancer. Obviously, this did not sit well with me. All I could think about was how lucky she was, for her worry to be revealed as needless.

I hate that I think this way. I hate the disease comparison/competitions that are so prevalent lately. I catch myself thinking “I WISH I’d had a false positive” and sternly rebuke myself for sounding like that cancer patient in the UK Pancreatic Cancer PSA (“I wish I had breast cancer”) that inflamed so many breast cancer patients last year. (Want Attention? Just Say Breast Cancer.) But I am envious; I do wish I’d had a false positive instead of cancer because, well, I wish I’d never had cancer. I know I sound like I’m diminishing the fears of others, I sound not so compassionate–I’m working on this—I’m human, not perfect.

I think I have psychological damage, but the opposite kind of damage that all the hand-wringing is about. I worry because I didn’t worry back when I had reason to worry (am I making up for lost worry?). I do not trust tests, even when I have them and the results are showing no signs of cancer. I mean, I’ve heard that bad joke before, haven’t I? You’re fine—no, wait, no you’re not! Some say the government should not legislate the doctor-patient conversation. But having been a patient with the experience of finding out bits and pieces during and after treatment, well, I am left distrustful, doubtful, and faithless in most medical professionals’ abilities. That is just how it is for me. One big mistake was made about me, and I am unforgiving and taking it out on everyone else I guess. So when I read the hand-wringing about needless worry, all I can think is, “man, I got nothin’ but worry now, how about we trade, I’ll take some of that needless worry”.

This ramble is just to explain how I arrived at this point of view now, unsettled by use of emotion as an excuse to withhold information from women. I’m sure other bloggers can tackle the patriarchal medicine issues I think, and others might think, are going on here. A few months ago I caught a re-run of “Designing Women”, in which a character was encouraged to get a second opinion and biopsy. The first doctor was framed as a villain—accused of telling women to let him do the worrying for them. While I doubt we are on the path back to those dark ages (the 80s!), there is still a…I don’t know…”whiff” of “let the omnipotent medical professionals handle everything” when I hear an argument to withhold information—however useless—from a patient.

I also realize that far reaching public policy should not be influenced by the individual, stereotypical “personal cancer story”, just like my boring version I tell here. What happened to me was statistically rare (or so I understand and I do not think singular), so what is the use of telling every single woman under 40 about densities and risk. None, I guess, except to keep 1 in 233 women from experiencing the same sucker punch I did. The push for laws informing women of density was beginning while I was in treatment. I became dimly aware of it, having first ever heard the phrase dense breasts in the daze-filled first days of cancer, when I weakly asked how on earth my first mammogram was clear, what with all this cancer I suddenly had. All I got was the lame shrug and “young women have dense breasts” line, absent of further explanation. I still hold resentment—psychological damage, if you will—about that.

I want to jump on the “eliminate needless screenings” bandwagon, since I run away from the “mammograms/early detection saves lives” chants. But as long as that specter of “don’t let these emotional women worry so much” remains in the arguments, I will not be listening, much less agreeing.

Not Long and Beautiful

There are some issues that get talked about quite a bit in cancer. I admit, some of them were huge issues for me, like the Dumb Shit People Say to Cancer Patients—but I’m kinda over that now. I do revisit the topic if something happens that grinds my gears, then I write a post, thinking to myself, “OK, I’ve overdone that topic, don’t want to write about it anymore.” Ha ha, until the next time. The Dumb Shit will always irritate me, but just less than it used to in the first confusing, angry, depression-filled months after my treatment ended.

Hair was not a big issue for me either. Of course, I did write about it in a guest post elsewhere, but that was enough—or so I thought. (Read the old post here, but I’ll sum up and refer to the finer points in this post.)

I’ve heard some tales in CancerLand that some women found the loss of hair more emotionally challenging than loss of breast tissue. Not so for me, and I only had a lumpectomy that left me lopsided and single-nippled (is that a word? it is now). As much as I find the “don’t worry it will grow back” comment insensitive when said to me, deep down, I knew it would grow back–unlike my nipple. So that is how I rationalized that the hair loss was of less importance than breast surgery.

Where it gets complicated for me is the old myth that my hair would grow back better, stronger, and curlier. I always had curly hair, and having my regrowth even curlier was and remains a problem. A big, fuzzy, my-head-looks-like-a-dandelion kind of problem.

Now, as I said in that old post, I do not mean to diminish the very real sadness many women feel about going bald. But for me, it was more of a symbolic problem. When I had long hair before cancer, the first thing I did each morning was pull my hair into a messy bun or ponytail to get it out of my face. During my time of chemo baldness, I’d reach up each morning to get the non-existent hair out of my face, only to find myself grabbing air. I was cruelly reminded each morning, before even managing to get totally awake: “oh right, I have cancer.” I never got a moment’s respite.

When the hair (ALL the bodily hair, again, that is what that old post is about) began to return, I vowed to let all my hair grow back–long, beautiful hair, just like that hippy dippy song says. But, I did go back to some very private hair removal for a VERY good reason (again, covered in the old post, click above). And since writing that post, within the past 8 months or so, yes, I’ve even resumed eyebrow waxes. So my “let it grow, let it grow” phase was nearly over.

As of the other day I can officially declare my let it grow mantra kaput. I was having an extraordinarily bad hair day. I heard myself mutter, “maybe I should just shave it all off.”

Whoa.

Some of the bitter moments during treatment would find me remembering how I’d wanted to just shave all my hair off on a bad hair day, and kicking myself for taking my hair for granted. I vowed to never make that half-joking comment again. But, I did.

So how did it come to this? This is where the myth, told to me by a few well-meaning souls, of hair coming back thicker and better, proves to be just that: myth. My hair has become more unmanageable each day post-cancer treatment; it is not thick and lustrous. It is coarse, thin, frizzy-curly, and just awful. That vow to be grateful is forgotten, and here I am, not only taking it for granted, but saying what I used to say in my younger carefree days, “….(sigh)….I should just shave it off”.

Because I over-think everything, seek symbolic meaning where it should not be sought, of course I began to rack my brain for other lapses I might have committed as my treatment days recede into memory. Are there other bad habits I indulged, or things I once took for granted that I now take for granted again?

I cannot think of anything right now, but I am on alert. I mean, I certainly do NOT take my health for granted like I did. On the contrary, I constantly scan for aches and pains, miniscule changes in anything, because I am sure I’m in a downward health spiral, what with cancer and just plain being over 40. I’m not the sappy, mushy, treacly type (I’m more lemon-acid-sour), so I never had some big clichéd epiphany of “life is precious, I’ll be a better person”, so overdone in mainstream cancer stories. I think perhaps I’ve slipped back into some fatalistic thinking again lately: “oh everything causes cancer, just eat what I want, do what I want, it is unavoidable”. This is in stark contrast to the first post treatment years of carefully avoiding nail polish and eating or drinking out plastic containers. I know that is irrational; one self-applied manicure and one microwaved dinner by themselves maybe won’t push my cells into unrestrained division to form a tumor. But I avoided those things right after treatment as more of superstition. Like I know stepping on cracks would never break my mother’s back—yet I’ve never intentionally stepped on one. (My mother is highly superstitious to the point of never walking out a different door of a building than the one she used to enter, because she thinks it causes bad luck. Of course, I make a point to use different doors to drive her crazy, because sometimes I just like to push people’s buttons—what can I say? I can be a brat for fun.)

OK, OK. This whole post is an exercise in overthinking dumb shit. And maybe being too hard on myself simply because I had a bad hair day.

On the other hand, maybe it is time for a drastic haircut, time to let go of the long hair to which I’ve formed an unhealthy attachment. Cancer made some terrible physical changes for me. It is time to adapt.

Shoes and Vigilance

Cancer has made me hate clichés and metaphors (I’ve got a big rant in the works about THAT). But, I admit clichés can be useful because sometimes they are just so accurate, and I find myself using them in spite of myself. The cliché that has ruled my life for the past several years is “waiting for the other shoe to drop”.

I’ll admit up front it isn’t just cancer that made this cliché so dominant in my life. Prior to and during cancer I was in a situation where I was always waiting for the drop of that other shoe. Some detail or whatnot I missed months ago had a way of biting me in the ass much later. By the time I was diagnosed with cancer, I lived constantly on the edge of my seat, waiting for bad repercussions of I-don’t-know-what. I kept vigilant, couldn’t make the smallest decision, without over-thinking it, looking for all the possible outcomes that could turn bad. And yet I still seemed to miss something, and I always felt like I didn’t even know what I was looking for. Too many times a detail would seem benign, only later to be revealed as THE ONE THING that I should’ve realized would explode months later. This repeated experience paralyzed me into often just not making decisions at all—which produces yet another horrible outcome. So you can see how a cancer experience can intensify living in a constant state of red alert. It is an exhausting way to live.

After treatment ended, I extricated myself from that horrible situation, but I remained in a state of constant vigilance for a loooooong time. As my “mythical” 5 year mark approaches (snort of derision), I have relaxed a little bit. I’ve even relaxed in spite of the awful mammography-to-MRI scare last spring (see Complicated Relationship with Hope and Scar Tissue). But I guess it is scanxiety causing me to get a bit tense right now—annual mammogram is tomorrow.

I realize it is not just in terms of cancer that I have this motto of constant vigilance—like Mad Eye Moody in the “Harry Potter” books. (Didn’t he always used to sternly tell the students: “Constant Vigilance!!”? Been a while since I read the books.) I find that when I start feeling all is right with the world, when I think, yeah, I’m “happy”, I get a nagging feeling in my stomach—something is bound to go wrong, that shoe is gonna drop. I chastise myself for not being hyper-alert at all times. I worry over every little thing I said to every single person in the previous week. Or worry that the funny sound I noticed in the car a few days ago is the first sign of my engine’s impending explosion (sometimes my imagination goes to the fantastic, what can I say?). Ugh, why was I not vigilant? Why did I relax? Everything is going too well and it can’t last.

Now, I am sure this ramble proves I’m “stressed out”, and invites the gentle rebuke that I should relax—and some folks think stress causes cancer. I don’t even wanna go down that rabbit hole today—because in my mind that is just another way for me to blame myself for getting cancer (I put myself in a situation of greats stress 10 years ago and did not get myself out, thus causing all my own stress, so I got cancer, and deserved it—ugh, please, don’t lecture me, I can do that all by myself).

But what the act of writing this reminds me is that I learned so many lessons from cancer—but not the kind that get written up in feel good stories on cancer treatment/organization websites, or local and national newspapers touting the newest cancer hero. I learned lots of bad stuff—someday I will write Cancer Curmudgeon’s bad cancer lessons handbook, I swear! But specifically today I’m thinking of how cancer taught me I’ll never be safe again. I guess if I were to get all philosophical, I could realize that bad stuff happens and everyone dies, safety is no guarantee. (Again, I don’t want to hear trite tidbits like I could get hit by a bus any moment—ugh, so overdone.)

The concept of control is a post for another time, not today (though I have flirted with the topic in a past post). I do try to control things that are out of my control; that has been a lifelong struggle. I’ve always been a conservative (not in the political sense) person, careful with risk to the point of avoiding it at all costs, especially money—given that my parents were and remain financially strapped—and we all know that cancer is an economic disaster (no I don’t like gambling, how’d ya guess?).

Two years ago I foolishly put my phone in pocket which led to the dang thing falling in the toilet, getting utterly ruined, and I had to go through the annoying process of waiting and replacing. I vowed to be forever careful, to NEVER let something so stupid happen again. And I was successful until a few days ago. I allowed myself the luxury of a pedicure—only the second in my life—had the phone in my lap, leaned forward, and boom! Phone slid into pool of whirring water intended for feet. I did all the “right” things (put in rice overnight) but the charging apparatus was ruined, and yep, I just got my replacement and I’m going through the gymnastics of re-setting it all up without the ability to import anything from the old dead phone. I’ve been kicking myself for my lack of vigilance the past few days—how could I let this happen?!

So today I must talk myself off the cliff. My lack of vigilance about the phone is not some cosmic sign that my lack of worrying about recurrence will result in disaster tomorrow. I don’t believe in that “cosmic” stuff anyway.

I just have to keep telling myself that.