After All This Time

After all this time, scanxiety is still a bitch. It will be 8 years since diagnosis in October for me, and I’m impatient with myself. I’m soooooo jaded about EVERYTHING in cancer world (and elsewhere) yet I can’t seem to be jaded about my own fear.

Some annual mammograms are worse than others. I was tense last year, but not very much. I kind of figured it would “all be OK” and it was. This year I’ve had some pain on my right side, around the breast and under the arm. That would be the other side—my cancer had been on my left. I’ve also had some nagging throat/gland pain, so my paranoia is quite high. So naturally, as you can imagine, I’ve been a massive asshole for the past month or so. Super irritable. Quiet. Too much in my own head, up my own ass. What little “acting upbeat” energy I mustered, I saved for my job, and I’m ashamed to say I didn’t manage that quite well either.

When I went for my mammogram a couple of days ago—the oncologist always schedules a diagnostic, not just a screening one—I brought up the pain, and was approved to get an ultrasound too. All is well (with that; my throat issue will be dealt with next week). Two things struck me so hard during that hour or so it took to do all of this. The first was an idea that maybe I’m good at manipulating this situation. There is a sort of—not privilege exactly—being a former cancer patient. I was believed, there was no question. I know how to phrase it in med-speak: “I’m experiencing pain in the lymph area, and the side of the breast,” I say, so calmly. And they are all over it. It just seems to be in great contrast to things I’ve read (at random, they just seem to pop up in feeds lately) about womens’ pain being dismissed, chalked up to mental/emotional stuff. And while I still carry around a grudge about my first ever mammogram totally missing my giant-ass tumor back in 2010, I no longer mention it in the threatening manner I used to use to let imaging techs know–hey, you fucked up with me before, don’t let it happen again. What a weird status, to be a former cancer patient in the imaging center.

Second thing that struck me was just how much I HATE all of this. I hate the mammogram, it freaking hurts, especially on my left—the impacted side, the nippleless one. I always think I’m going to faint, but luckily I manage to get through. I hate sitting there in the ultrasound room, I hate the gel. I hate going into any medical facility, if I get right down to it. I hate being older so that the likelihood of potential diseases increase each year—any disease—whatever that will force me to take meds, see doctors. Yeah yeah, aging is a privilege denied to many, too many that I’ve known. So I’m not doing the “getting old isn’t for the faint of heart” thing—but, dammit!

When I was making my treatment decisions during that year, I remember a friend advising me to just “chop ‘em off”. So insensitive and I’m still sore about that. But on the other hand, before my diagnosis, I probably held the same view. It was only when faced with the reality that I recoiled from that caviler notion, and decided to take the lumpectomy the oncologist and surgeon recommended—because my chemo had done “so well”! Not sure why I didn’t want to lose my breasts, they aren’t great or anything, and I’m NOT a beauty queen, it was kind of out of character for me, really. Afterward, I was a bit smug, as I read all the articles during my early blogging days saying women were over-treating, jumping the gun in bi-lateral mastectomy, which does NOT increase survivability, does NOT decrease recurrence (cancer very rarely jumps from one breast to the other). I was prideful of a rational decision. But really I was just afraid; of what I don’t know. There are days I regret it. I know full well this is stupid, removal would prevent very little, but when scanxiety kicks in, rationality flies out the window. And I would just redirect my paranoia to other body parts—I’m doing it right now!

(NOTE: I’m not a medical professional, don’t let my confession of regret inform your decision—hell, don’t take ANYTHING I say or do as a factor into a decision—I am the worst, trust me, I’ve lived with myself for 46 years, I repeat, I’m the worst.)

I think I started this blog in 2012, so it is nearly 6 years I’ve been at this. I bet I can find complaint posts from as far back as 2013-14 regarding my frustration with the bi-annual “mammograms are not that great” debate, the cyclical debates about war metaphors, just everything. Feels like I’ve heard every angle to every argument about a million times. As I’ve said on this blog repeatedly, I’m short on patience. I cycle through things quickly. I get jaded fast before others (new patients I guess) even discover some of this stuff. So now I’m a bit jaded and impatient with myself. So often in the past year I’ve written posts here and on Facebook that cancer culture and the pink shit has GOT to move forward, the stagnation is choking me! Now I’m gagging at my own stagnant self, because I am still reduced to jelly knees when the annual trek to the imaging center arrives.

Longtime readers know, I’ve been absent here because I’ve switched focus to politics in the past 18+ months. But I’ve even been lame with that. Every day is a new low, a new outrage, and I am very burned out. This is not good for someone who has no patience (like, uh, me!). So I’ve been careful on Twitter, on all 3 of my accounts—nothing worse than an angry tweet, screenshots are forever! And Facebook’s algorithm is so stupid I just keep seeing the same stuff over and over; I do little 1 minute scrolls on my phone, but I barely register what I see.

I guess you could say I’ve disengaged a little bit. I needed a distraction for April and May so I concentrated on the end of the TV series “The Americans”, interacted with other fans—it was nice. I needed that escape.

Of course, I cannot stay disengaged for long, real life intrudes. I was stuck in traffic the other day (summer at the beach, y’all) behind this car with a multi-colored ribbon sticker that said “support cancer awareness”. It took all I had to not leap out of the car and shake the other driver: “what the hell does that even mean?!” I was so overcome with hatred for the word “awareness”, for the fact it has lost its meaning. And just a few minutes ago I was trying to listen to the 50 freakin’ podcasts I’ve downloaded on my phone and an interview with Amy Robach popped up. It was only a 15 minute thing (or so—I listen at 1.5 speed or I’d never catch up). But she managed to say every damn cliché known to breast cancer narratives (yes narrative is a damn cliché too). I only agreed with her on one thing: that it can kind of suck that docs tell us our treatment is “our choice”. I mean, I appreciate not having some god-complex-afflicted doctor command me from on high like in the old days, but on the other hand, I am paying for their expertise, because I sure as shit don’t have it. Everything else she said was just a mess. She started right off with the whole cancer makes you a better person myth that is oh so damaging. I would’ve turned it off, but I was washing dishes, and I just didn’t want to take the time to stop, dry my hands, then go back to it. I guess I should reign in my harshness. New patients might find solace in her “story”, others still, who are more like myself—and probably like you if you’re reading this—have to come to their realization in their own time. I can’t just stand up and be like, “hey can we all collectively, as cancer patients, no matter what year of our journey we’re at, just stop with this tired old script?” I want to do that, but then, I’m a bit crazed of late.

quotes-Where-is-my-mind-

Well, I went off the rails a bit didn’t I? This has been a periodic, classic Cancer Curmudgeon word vomit, stream-of-consciousness ramble. It is the written, electronic, blog post equivalent of me poking my head out of the little cocoon I’ve developed, looking around and going “what the fuck?” and diving back down.

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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.

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.