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.

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You. Are. Scaring. Me.

Attention all medical professionals–doctors, nurses, especially those working in imaging facilities: your questions frighten me.

I used to think MRIs the most serious and nerve wracking of all imaging tests, but now I think ultrasounds are just as bad. I’ve had a few of those–first to find my breast cancer back in 2010, then all throughout treatment in 2011-12, to monitor my heart’s reaction to damaging cancer treatment drugs. The ultrasounds for the heart weren’t so bad; maybe because it was so clear to the techs why I needed the test. But my first breast ultrasound was pretty upsetting. Lots of questions, bringing in other techs to view the images, and just a general atmosphere of “something is wrong”.

The same things happened today as I had to undergo an ultrasound to find out what my worse-than-a-UTI problem actually is. As she applied the gooey wand, the first tech asks have I had many UTIs? (No, my very first was last September, and the second wouldn’t go away it seemed, and that’s how I wound up here.) She brings in the second tech.

I understand the second person is needed, in fact, I think my first tech was an intern who needs her work checked, even if she performed her tasks correctly. But I’m sure “Seinfeld” or “Friends”, or both, covered that issue of having something so bizarre or serious that other medical personnel want to see it. It was funny on those shows, but not funny in real life.

So the second tech begins waving the gooey wand and watching whatever images the inside of me put on that screen. “So have you had kidney stones?” Great, another question.

NO!

“Your questions are alarming me,” I said as matter of factly as I could.

“Oh we just have to tell the radiologist what you say–he’s gonna ask about it,” she chirps.

“But you are not recording  my answers,” I pointed out. Please, I cannot remember whatever I want when I enter a room without making a list these days. I do not expect any medical professional, with a million patients running around, to remember one darn thing. So, please, jot down my answer when you ask me a question, especially if you claim the info needs to go to another person.

Dead silence. Did not even bother to answer me.

I admit, I’m a naturally anxious person and I tend to let even simple things ruin my day, my week, my month. And a health concern is not a simple thing. So I’ve walked out of the hospital today completely worried. I’ve no idea when I can expect to learn about my results. Yes I have a follow up with the urologist in 6 weeks–but that is if all went well with this test today–and I don’t think it did.

It is possible I am imaging problems where there are none. Maybe I don’t like ultrasounds because the person administering the test is so close and I’m trying to “read” them. I cannot help myself. So when I’m asked if I’ve had recurring stones or UTIs, all I can imagine is that they are thinking stuff like: “OMG, her kidneys/bladder are a mess. How could she go so long without problems? Why did she not get to a doctor sooner?” And of course, as a cancer patient, even though no one has said “cancer”, I cannot help but wonder if they are thinking, “look at that huge tumor.”

In short, the questions scare me.

In addition to my own self-made panic, another, more logistical concern grips me. I realize that the urologist (or whatever doctor) writes an order for a test, but why is the other, relevant information not communicated to the poor sap who has to look at the images, interpret them and report findings back? Shouldn’t the people making and analyzing the images know what is going on with me? As in why on earth are they looking at my bladder and kidneys? What are the symptoms or concerns that put me in that room with them? Is this some kind of freakin’ treasure hunt or detective game? It’s as if the doctors are saying, here, look at this person’s organs and see if you can find anything wrong–but we’re giving no hints.

I confess this is a rather irksome issue for me. I cannot help but think back to my very first mammogram, that resulted in a false negative. I know, I know, I should let that go–after all, the tumor was discovered just a few weeks later, and I lived, so I should shut up about it. But humor me. I went to get that mammogram not because I had any symptoms, but because I had a strong maternal history, because my aunt was just diagnosed at age 50–a below average age for breast cancer. I was 38, below the current recommended age for getting annual mammograms. I was being proactive. So did the radiologist see my age, know the family history, and just blow off that big white spot as density, when it was really a tumor anyway? Or did that information not reach him, and he just saw 38 year old white female with no symptoms, and maybe he thought–oh they always have dense breasts, no worries? And please know, the tumor was not hiding IN the white area, it WAS the white area. As mentioned if previous posts, I have trust issues when it comes to tests and such, and this is why.

I know it would not change anything to have been diagnosed a few weeks earlier. What happened, happened; and I am still here. Maybe I’d be a little less angry, who knows? I am curious to know if background history gets communicated to imaging personnel, and if it is factored in. If it isn’t, um, is there a petition I can sign to change that? Maybe some patients think all that information sharing between doctors and medical facilities is invasive. Not me–I think of the very thick file that followed me at the infusion center, I think of all my discs containing images from various facilities. All of that is me, my story, and I have no idea what parts are relevant for this moment, this particular problem. Is that not why my records exist…in recorded format?

So, again, to those doctors, nurses, imaging techs: asking questions–and worse, not answering them, and how you behave, even your face, I’m over analyzing all your actions. Maybe most patients do that, maybe not. As a cancer patient, well, these situations take on a higher terror level for me, and I’d guess many other cancer patients. It doesn’t matter if YOU don’t say cancer–I’m thinking it. And even if it isn’t cancer–well, I’m in a center, getting a test, I’m thinking the worst. Please understand that.

And I walked out of the hospital today frightened.

Scar Tissue

It is possible I’d become less anxious about mammograms now that I’m 3 ½ years out from diagnosis. I’ve said a few times on this blog that I’ll never be “over” cancer—that fear of recurrence will always be with me. I know I am not the only person who thinks like that. That great Slate article published last year quoted Dana Jennings: “Even though my health keeps improving, and there’s a good chance that I’m cancer free, I still feel stalked, as if the cancer were perched on my shoulder like some unrepentant imp.”

Well, that nails it.

Medical facilities still grate on my nerves, so, I was only a tiny bit less anxious for my recent experience a couple of weeks ago. So it was a bit upsetting to be shown an image with a new, large white area on the chest wall under the place where the original cancer had grown. It was more upsetting to get hauled back to meet with the radiologist to discuss it, although I do appreciate that he did meet with me. Of all the imaging I’ve had done at various locations throughout this whole cancer mess, this was the first time I’d ever met with the person reading the images. Usually, my interaction is limited to the person putting me or parts of me into machines, and the radiologist is hidden like the Wizard of Oz or something, issuing directives and proclamations.

“Probably” scar tissue from the surgery, he said, but he’d like to do a MRI. I handed him the disc of images from my last MRI, from the summer of 2012. That was a year after the surgery (April 2011). No white area. “Still,” he said. “Probably”, he said. “Scar tissue.” How about that new MRI? Well, at least I got through 2013 without getting an MRI. 2010, 2011, 2012, 2014, not so much.

The MRI was ordered, scheduled, and approval from new insurance company obtained (because I refused to have the MRI unless approved—I’ve fought that rejection-after-the-test-is-done battle before, and I cannot afford the MRI, period). For 6 days between the mammogram and MRI I went down that cancer road again, assuming the worst because I already know “bad”—I don’t want to know “worst”. The dread, paralysis, and everything just overtook me like it did before. Maybe worse, because my financial and job situations are different now. Even though I did not have all the puzzle pieces—like an actual diagnosis, treatment plan—I was still trying to come up with a strategy for how to handle the worst.

Words like “probably” and “unlikely” or “the odds” now scare the crap out me. As mentioned in the previous post, my initial diagnosis was a sucker punch—I was just being proactive, following the “rules”, when I decided to get a mammogram after my aunt’s diagnosis. I thought it so unlikely I’d have it so young, while another family member was having cancer. But when symptoms presented, I got another mammogram, two ultrasounds (one with biopsy, one without), and the MRI which finally established just how large the tumor was. Each new test result just seemed to yield worse news during those first frantic days of cancer. So my take away has been: test = bad news, and more tests =  wait, it gets worse.

Fortunately that wait-it-gets-worse streak ended back then with results proving cancer was confined to the breast. And the streak stays at the end now—within 24 hours of the MRI, I learned at least that there is still no evidence of cancer.

Obviously, I’ve experienced a gamut of emotions. Upon getting my good news, relief was the most prominent. My week-long headache went away and I was finally able to sleep. In fact that is kind of what I’ve done since then—sleep and do mindless things like watching movies, reading, wandering the internet. My ability to focus, never great since I was always hyper and easily distracted by shiny things, was destroyed by cancer. This new, mere threat sent me right back to the cancer days when I was utterly incapable of focus (hence the lateness of this follow-up post). Of course, the whole time I was processing this incident.

Physical scar tissue is what caused all this upheaval, and it re-opened the scars on my psyche. They were healing, and now they are not. This is not to say I was not fully aware that this sort of thing would and could happen. I even wrote about this a few months ago (My Reality and Your Fairy Tale), and heck, even before that (I Can Pretend).

This is the scar tissue, the reality, I wish more would see and understand. This is a reality I think is sorely under-represented in the media. Before I got cancer, I believed what I saw: get cancer, go bald while getting treated, then: all better! Somewhere in the midst of being overwhelmed by the diagnosis, I began to grasp the lifelong effects in store for me. As I said above, and in past posts, my cancer experience has been a sucker punch. The current and ongoing sucker punch for me is this refusal by others to even comprehend the scars—physical and mental—that linger after cancer.

I’ve been thinking quite a bit lately about why I blog, or even the nature of this blog, about navigating social interaction with others who do not know or will not accept what I think are incredibly obvious truths about cancer. Whatever the word truth means anymore—everyone has their own version, right? I’ve been thinking especially about this absolute refusal by society to think there is only one story of cancer: get cancer, fight, and either win (patient recovers and cancer never comes back and all is well) or lose (patient dies because of poor fighting skills). Scars are never considered. But I will continue to write about the scars—not just the physical ones on my body—the scars caused by this cultural myth of cancer.

Er, as soon as I can force myself to focus again, that is, will I write these things.

But in the meantime, I remind everyone I’m a Cancer Curmudgeon, and I am indeed socially awkward. Usually sarcastic, rarely sincere. But I do sincerely thank all of you that sent good vibes and well wishes in comments and in private messages. I am humbled and grateful.

 

“Scar tissue that I wish you saw

Sarcastic mister know it all”

-“Scar Tissue”, Red Hot Chili Peppers

 

Until next time, then.