In Real Life

I had the pleasure to meet a Tumblr cancer buddy, Greg Barnett aka gbph, this weekend, live and in person!

Meeting people via social networks is still new to me. Before cancer, I spent too much time viewing computers and the internet as work or chore tools—not recognizing the positive things that could occur. I am so glad that I’ve learned how great it can be to connect with people with similar interests, opinions, tastes, and more. Greg has been a huge influence and great cheerleader in my post-cancer life, one I will be eternally grateful for. (I’ve linked to his Tumblr blog or posted his thoughts a few times here on this WordPress blog.) I’ve been lucky in that this is my second real life Tumblr meet up; I’m lucky to have a found a dear friend in the crazy fandom world on Tumblr in rouge347–and we were lucky enough to meet in person a few weeks ago!

I will never be able to fully express just how much my life has been enriched by these experiences, how much I love my buddies!

Greg and I after lunch at a restaurant on Maryland’s glorious Chesapeake Bay:

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.

Gumball Machine

I’m gonna take that infamous Forrest Gump quote and tweak it and turn it on its head: life is NOT like a gumball machine. I cannot just put something in (money, effort, etc.) and expect a specific outcome.

Over two weeks ago, I wrote and posted Unintended and Unwelcome Interruption, about why I’d not been writing or even commenting much in the blogosphere. Namely, I was struggling with computer issues and some urinary distress not to be blown off as a mere UTI. By then, those issues had been going on for a few weeks. And they did not end with that post. So yes, I’ve still been spotty about posting and reading new posts by my favorite bloggers—well, I can read them sometimes, but only able to “like” or comment at random moments according to activity and what machine was working at the moment.

The fall-out from the past two months is some unpleasant understandings. I’m not saying cancer was easy for me, but I knew, and realized all over again, I was lucky in that things went according to plan. The oncology team suggested, and we all agreed, let’s do chemo to shrink the tumor, then remove what it left (lucky lumpectomy!), then do radiation. Except for a few hiccups, as in a misdiagnosed Staph that delayed radiation, all went according to the plan, the timeline. Yeah, it took over a year—thanks to being HER2+ and needing a year’s worth of Herceptin—but everyone input the required efforts and actions, and the expected outcome was achieved. Again, I know that does NOT describe the cancer experiences of too many other patients, so yeah, I was lucky.

That does NOT describe my recent weeks.

No, I’ve fought and fussed with multiple trips to multiple computer repair services. A postponed appointment from the urologist before I even met him caused me to have an utter meltdown. I pride myself in applying processes of elimination and deduction to figure out solutions to problems. I do ABC and expect XYZ—and that just….never happened over the course of the past few weeks. If I were to play a film of myself and my recent behavior, I imagine it would look like someone running full steam into every surrounding wall and getting destroyed.

I’ve always known I have some issues with chaos and control, and have long planned to write about them, especially since cancer and control (or lack of) have left scars on my mind. My friend, who deals with chronic illness, and I joke about rearranging the sock drawer. When life events go awry and we know we cannot do anything about the events, we reorganize something, like the drawer of socks or other clothing. I like socks. I will group them all by when I wear them seasonally. The next time I feel out of control, I go and group them according to color and/or type. You get the idea. My life will be falling apart, but I can make the socks behave.

I think I’ve turned a corner, my issues seem on the road to being resolved. But, hey, I thought resolution was nearby two weeks ago with that previous post, and look what happened. I chastise myself to not count the chickens before they hatch. Still waiting to pick up one laptop, still waiting for medications and a test that could confirm what the urologists thinks is wrong—and I hope it is as simple as he thinks—as in NOT cancer.

But I am breathing a little easier. And I’ll leave the drawer full of socks alone today.

Guest Post At CureDiva

I’m honored to have been asked to write a guest post for CureDiva. It is a TMI post, so beware. But I hope it gives everyone a small chuckle, and opens a different discussion about all that hair loss. And yep, that is a picture of me, or rather my hair. I actually have more grey hair than it looks–not sure how I managed to hide it! Oh well, beginners luck in photography, perhaps?

It’s called Hair Loss. No, Not THAT Hair. Hope you enjoy.

Unintended and Unwelcome Interruption

I have not written/posted recently, and my commenting and reading others’ posts has been limited of late. This is not by my choice. I hope to get back into it soon.

I tend to let myself get distracted, and I tend to let things get in my way and stop me from moving forward. In little ways and big ways. “Let me get through college, and I can begin life,” I once thought . “Let me get a better job, and I’ll think about that aspect or next step in life.” Not wanting children, I did not have that clock ticking in my head, and I’ve taken too long with other things I wanted in life. What is that cliché about life happening while you make other plans? Yeah. I know this about myself and am certainly trying to change my ways. So, I keep thinking, let me clear this thing, or these things, up, and I’ll get back to my routine. Well, that is bad thinking.

My first, current major obstacle is a new health concern. While it does not seem to be cancer-related, it is still a serious concern. A UTI that just would not go away is not really a UTI. But I still have troubling symptoms and now need an urologist and more tests. I’m not happy to say the least. Logically I understand having cancer that one time does not give me a free pass on all future health concerns. I will likely encounter heart disease, blood pressure medication, and kidney troubles—all more common in my family than cancer—before I die. I just don’t want them yet. Can’t I just breathe free a couple more years please?

I’m on pain medication which makes me fuzzy—a big obstacle to writing. On top of that, of course I want to obsess and worry about the upcoming doctor visit. I have managed to avoid reading up on likely diseases on the internet—and that is not because I have great willpower (explanation coming, just keep reading). So instead I fixate on preparing for battle with this new doctor.

I’ve struggled with this not-really-a-UTI for a month now and so my frustration is high. My cancer experience left me very distrustful of doctors, and I feel like I’m in a bad place again. First, as this blog has documented, a very large tumor that appeared on a mammogram image was failed to be diagnosed. Then, in the middle of treatment, I picked up Staph during my lumpectomy. The PA that worked at the cancer center where I was treated, who is supposed to diagnose and treat all the cancer patients and our whiny complaints about side effects, really dropped the ball with me. She kept insisting I had shingles, when a quick internet search told me my symptoms were not in line with that illness. The whole time I was supposed to be prepping for radiation—being mapped and marked, and instead I was delayed in moving forward with treatment. I kept walking in to the center every day—the medications prescribed were not working, when I was told that my rash should clear up in a few days. Finally, after about the fourth or fifth day I was in the examination room again, pointing out that the rash was actually getting worse and that PA walked out on me, claiming I’d not given the meds enough time. The radiation oncologist happened to be in the room, and took a sample of the pus coming out of one of the bumps (it looked like my torso had come down with severe teenage acne). Few days later, well, what do you know? Staph. The PA did not even apologize or admit her mistake when she told me over the phone my real diagnosis, and to get to the pharmacy for my new, correct medication.

I will never forgive her for that. One would think the false negative mammogram would’ve taught me the need to be alert, to advocate for myself as a patient. I think the cancer diagnosis itself rocked me so hard I did not learn that lesson then. But I learned it hard the day I learned I had Staph that will pop up in a rash on occasion, forever. Medical professionals are NOT infallible and make huge, sometimes horrible mistakes. During cancer I was ashamed to think I’d not known my body well enough to know something as major as cancer was wrong. I thought that made the doctors think me sort of stupid. Never again. I know my body now. I push and advocate hard for myself. I NEVER enter a medical facility without my “cancer bag” full of discs, documents, and my laptop to take notes. I gird my loins and make the medical professionals listen and HEAR me. I have to. My experiences have taught me this.

The second obstacle causing my blogging absence makes me think I am crazy. In the good ol’ days, the classic Murphy’s Law problem was: car makes weird noise, owner takes it to mechanic, and car stops making the noise. The modern version of this scenario is played out with a laptop. My primary, work and fun laptop keeps, just….disconnecting from the internet at random, or at inopportune times. Right in the middle of writing a comment, or a long email. And all that was written is just gone. Forget researching my current medical concerns online. I keep hauling the machine to a local computer repair business. The damn thing is fine they tell me. They played online games all day with it, and it never disconnected once. Must be the ISP or network, they tell me. Except it isn’t, because my crappy, tiny backup laptop I use to access my business documents connects just fine. So does my smart phone. If an ancient piece of crap, mini-laptop and brand, spankin’ new phone are connecting, then it just ain’t the ISP. I report this to the computer fix-it guys and I get the glassy, “oh, she’s crazy” look. I only hope this post I’m writing makes it onto the internet. We’ll see.

I love the internet. I see so many wellness and airy-fairy blog posts encouraging folks to disconnect for a few days. Modern society, kids especially, these articles claim, we just spend too much time on electronic devices.

Hogwash, I say. I spent more than the first half of my life not connected to the internet. I love it here on the interwebz and I’m not leaving. Here, I laugh my head off as Justin Timberlake offers me a special holiday gift in a box. My president is Kevin Spacey/Frank Underwood. My spiritual leader is George Takei. My pets are Grumpy Cat and Moon Moon. I was having a rotten day a few months ago and was roaming my Tumblr dash and found a disco version of the “Jaws”. If I’d never had stumbled on that, I wouldn’t know I needed it, but I know it exists now, and yes, I need that stupid version. I also love to access the recoding of Freddie Mercury’s isolated vocals of “Bohemian Rhapsody” whenever I want, because for me it represents one of the truest forms of beauty I’ve ever experienced. No, I will never disconnect from the internet for wellness. For me, wellness IS the internet.

So writing a post has become tricky. I can write it, but when I go to post, well, whoops—off the internet my laptop goes. It seems to be doing better today, so I’m risking a post. If you are reading this, I was successful and will resume my rant-y posts as soon as I can!

Do You Have the Time, To Listen To Me Whine?

A/N: Words in that post title sound vaguely familiar? Yes another music reference, details are at the end for the interested.

I have not been able to sit down and write for the past couple of weeks without being interrupted every few minutes. There are many reasons folks blog, and I’ve come to realize the therapeutic benefits are more important to me than I initially realized. So it’s been frustrating to not be able to think something out by writing. I keep losing my train of thought.

What has been on that train lately is the reactions to the reactions to the no make-up selfie/Facebook game fracas. For the record—and this should come as NO surprise since I call myself the Cancer Curmudgeon—I am unimpressed with the silly games. It reminds me of the head shaving for solidarity issue that gets attention every now and then. I wrote about this in Something I Can Use, and may write about it again. My views are harsh, so I need to take time to cool off before a rematch. But that post from last summer still rings true for me, for now.

I got very frustrated when I read how vicious (threats of harm were issued in some cases) people could be toward cancer patients—the supposed beneficiaries—who dared to criticize these silly games. What struck me the hardest was Kristina Egan’s HuffPo piece called “The Controversy Surrounding the ‘No Makeup Selfie’ Gave It Depth – Without It, It Was Empty”. In this essay, Egan describes a conversation with a stranger on someone’s Facebook page. This stranger asked Egan if she wanted others to get cancer in order to understand what it is like to have cancer. I found that to be a rather vile accusation.

This struck me hard for many reasons I am still trying to sort out, likely over many future posts. But the main issue getting under my skin is this: there are many talented writers, including Egan, who explain what it is like to have cancer, and how and why nonsense like silly games frustrate some of us. This stranger’s question, in my opinion, is stupid; all she had to do was not worry about writing a response, and read Egan’s (or a multitude of others’) words to understand how it feels to have cancer and suffer these silly games, without actually getting cancer. I actually touched on this issue a little in that earlier post, Something I Can Use.

So I wrote thousands of words over the past week, and discussed this with someone I trust, who does not have cancer, but knows other chronic illness all too well. What I realized with her insight was that my thousands of words could be boiled down to this:

“WAAAAHH, no one is listening to what us cancer patients have to say! WAAAAHH, why do people feel the need to open their mouths/type before letting the cancer patient finish her thought? WAAAAHH, no one ever listens to anyone anymore!”

I have a bad habit of bringing too many issues and thoughts to the page as I try to make sense of one single issue, and often wind up with overly long posts.

I began thinking about how, when I started writing this blog, I hoped to contribute to an effort to change the conversation around cancer, away from that single story of: get diagnosed, lose hair, fight hard, be positive to cure cancer, get better, all is well.

I began to think why I want to change that story, or at least see alternatives to that story.

I began to consider how hard it is to get the alternatives to the uber-positive story heard—and to consider that it may not happen in my lifetime.

I began to think that maybe all I’m doing is writing to commiserate, rather than communicate—that I’m not even trying to change any minds about that single story anymore.

I began to think about how I am a bad listener, especially when I disagree with what is being said, even more especially when the subject is Pro-Pink.

I began to think I am arrogant in thinking an alternative is needed, that minds should be changed.

I began to think maybe some minds are changed, a few and a little at a time, and I need to alter my expectations, and be thankful for those who’ve told me I’ve changed their minds.

I began to ponder the chip I have on my shoulder about cancer patients vs. non-cancer patients.

I began to think that ALL my posts could be called “Do You Have the Time, To Listen To Me Whine.” Or I could alternate that title with a line from another song: “Hey! Wait! I’ve Got a New Complaint” (from “Heart-Shaped Box”, by Nirvana, and the next line, “Forever in debt to your priceless advice”, sung with much sarcasm, could be a post title).

I cannot even remember all the things I thought about that I wanted to write about, but forgot them when I finally had a minute to sit down. I think all of this faster than I can type it.

The real issue I started with, about fully listening/reading, comprehending, and having empathy BEFORE responding, was getting lost. I thought, well, I’ll just trash this and leave it alone for a while. But then I stumbled on this quote/graphic:

The only additions I have to this great quote—which almost sums everything up—is to add reading to the listening, and to point out that not even full or complete reading/listening is happening before the reply appears (see NPR’s April Fools’ Day prank).

While I was doing all my over-thinking it this week, I stumbled on yet another article on the classic dumbass things said to cancer patients, the one commendable soul who asks “well, what SHOULD I say?” and the valiant efforts by some to provide tips or advice on what to say. I’m glad progress in that area is being made, but I’m still frustrated by the emphasis on talking to, or at, the cancer patient. I rarely, if ever, see advice suggesting a person to at least offer to listen to the patient, giving them the opportunity to express emotions. I’ve taken a swipe at this issue before (Don’t Speak). One of the most damaging aspects of the Pink and positive cancer culture for me was not being heard when I was expressing fear or negative emotions during treatment. Sometimes it did not matter if others said dumbass or compassionate things to me; I was tired of my words being not heard or just dismissed. But this is just our culture—we all worry about what to say, not how to listen. Hell, this blog might be a direct result of not being able to get a word in edgewise, so this is how I think I can be heard. Sigh. All of this is fodder for other posts on other days, as mentioned above. File under: that post I need to write about all I find wrong with Pink, all colored ribbons, & positivity vs. reality. File under why I blog. File under how this cancer patient, a self-centered only child, became even more self-involved during treatment. Yep, somebody actually said to me “oh great, now that you have cancer, you’ll be even more self-centered.”

So this very long and rambling post doesn’t have much in the way of a point. I’m just whining, and whining doesn’t invite listening. All this post does, maybe, is provide a snapshot of my jumbled mind that likes to get distracted by squirrels and shiny objects, and talk about every topic under the sun at once. I could meditate to quiet or bring order to all of these thoughts. Or I could just obliterate the thoughts with some Metallica—now there’s a post: Metallica vs. Meditation! Yeah, that post is actually in the works.

Or maybe this post’s point is to write more posts, and to ponder the challenges of writing the posts. It is certainly crammed with introspection and reflection, when it started out to be one of my usual curmudgeonly rants. I’m sure I’ll get back to ranting—I like ranting! It gives me some happiness to get things off my chest (that is a proven idea, I’ll get to it when I tackle Metallica vs. Meditation, for real—there is study about it, I swear!). But that is the best thing about having a cancer blog for me. I can fully express and finish my thought (well, not this time, but whatever), and people can choose to read and comprehend or not.

I end with the fact I was up too late last night stalking “Rolling Stone” magazine’s Tumblr for news of the inductions to the Rock and Roll Hall of Fame. In honor of my favorite inductees last night: “Oh well, whatever, never mind.”

Oh damn, that lyric could be another post title. Shut up and settle down, brain.

Regarding the A/N: From Green Day’s “Basket Case”:

Do you have the time
To listen to me whine
About nothing and everything
All at once
I am one of those
Melodramatic fools
Neurotic to the bone
No doubt about it

Sometimes I give myself the creeps
Sometimes my mind plays tricks on me
It all keeps adding up
I think I’m cracking up

I liked this song, and Green Day, back in 1994. But I dismissed them as “little brother music”, not “real” like The Clash or Nirvana or whatever. Ah the arrogance of a newly adult 20something who thinks the music she grew up on superior to all that comes after. Wasn’t really listening or comprehending Green Day very well. Ten years later Greed Day released the punk rock opera (a contradiction in terms if there ever was one!) “American Idiot” and I realized the genius there—and how wrong I was. I’ve seen a lot of bands live, and I finally saw Green Day in 2009, and they are one of the best live bands ever. They used to get accused of selling out—aren’t punk bands only supposed to play small, intimate clubs, not arenas to thousands of people? That old BS. But as I sat in the nosebleed section far from the stage—it was still somehow intimate. Nothing can beat the feeling of singing along to great songs with thousands of fellow fans.

Perfect

I will never call myself a ‘cancer survivor’ because I think it devalues those who do not survive. There’s this whole mythology that people bravely battle their cancer and then they become ‘survivors.’ Well, the ones who don’t survive may be just as brave, just as courageous, wonderful people and I don’t feel that I have any leg up on them.

— Barbara Ehrenreich

A Sad Re-post

Apologies to those who read my blog for cancer rants. Not much of that this week. Here is a re-post of something that seems fitting today.

I’m In Love With That Song

Posted on October 24, 2013 by Cancer Curmudgeon

“I’m in love with that song.” –from “Alex Chilton”, The Replacements, lyrics by Paul Westerberg

I have been feeling utterly defeated by all the Pink this October, despite my earlier claim to Take October Back. But a very welcome distraction arrived for me last week in the form of the 16 nominees for induction into 2014’s Rock and Roll Hall of Fame.

I pause here to acknowledge the absolute lameness of a former punk-alterna-girl being so invested in the Rock and Roll Hall of Fame. Rock in general is about rebellion, and the Hall of Fame is an institution, the sort of which rock should rebel against. And even if rock became “respectable” somewhere along the way, then things like early and classic rock belong in there, but the punks that came along later to rebel against the established stuff, and then the post-punks after that, I mean, wouldn’t they rebel against that former rebellion-turned-new institution/establishment? See the Sex Pistols’ infamous rejection of their induction in 2006. Even worse, I have to pause and acknowledge that in the past few years I’ve seen a few of the bands that provided the soundtrack of my teen years creep in, which just really means, I’m getting old.

Yeah, yeah, this is a cancer blog, and that will come into play much later in this post. This blog is an indulgence for me; my view on cancer, my personal experience with it, and how I (don’t) function in an American social culture that surrounds cancer, which I find mostly distasteful. So I’m indulgently rambling about music, because it was the one respite I had once I found myself a bit lost upon exiting the treatment treadmill (“you’re all better now, see you in 6 months!”, ha ha). Proof of my allegiance to my method of beating cancer blues is everywhere; in the post Punk Rock (Breast) Cancer, my tattoo (Red Hot Chili Peppers, Hall of Fame inductees in 2012), hell even my gravatar (The Ramones, Hall of Fame inductees in 2002).

I skip over the crap like “rap doesn’t belong” (yes it does, and I’d argue that until I’m blue in the face, and even if I lost the argument, I’d still argue it), “Yes/KISS should’ve been in there loooooong ago”, or “the world is doomed because more people like Nirvana than Link Wray”. Yada, yada, yada. I love watching the arguments unfold on various websites, and agree and disagree with so much of it. “We all come from the damn blues,” said Chuck D. (Public Enemy) in his acceptance speech last year. That should be made into a sign and posted above the door to the museum in Cleveland, or maybe noted in every article about this comparatively (to cancer, for me) silly topic, to remind everyone with an opinion how the whole mess called rock and roll got started.

My humble opinion is any person or band that is inducted, or heck even nominated, including the 16 this year, deserves to be there. I do have my favorites however, and this year I’m voting every day for Nirvana, The Replacements, N.W.A., LL Cool J, and the fifth option is a wild card for me every time. I could write forever extolling the qualities of my choices, but it is the first two I’ve listed that matter most to me now.

As a lonely punk-goth girl (weirdo) growing up in the 80s (remember in the 80s, there was no interwebs, so radio and magazines were the only exposure to music available) I hated what was on the radio; I lived in a rural area where there were no alternative stations—D.C.’s WHFS was an hour out of range. I loved the left of the dial stuff like The Cure (nominated once), The Pixies (never nominated, an outrage) and R.E.M. (inducted in 2007 and yeah, gonna be a snob and reveal I was fan well before they got played on regular radio, and got all famous). I used to stay up for those one or two hour programs of “college rock” on the radio or “120 Minutes” on MTV just so I could hear stuff to my liking. It was on one of these programs I first heard Nirvana’s “Smells Like Teen Spirit”.

People always like to talk about where they were when they heard the bad news of some horrible event, and lots of cancer patients remember all too well, and have written about, where, how, and when they first heard of their diagnosis. My own memory of that, still so sharp, I’d like to erase. But I always want to remember the feelings and thoughts when I heard first heard “Smells Like Teen Spirit”. I was beginning my junior year of college, tired from working my ass off all summer to pay for the privilege of extended education, but still unsure about my future (well, that turned out unexpected, what with all the cancer). I heard that song and knew it would change everything.

Reams have been written about the influence of Nirvana in rock music. To me it was much simpler: the weirdos won. Finally, I could hear music I liked on the radio—which was great because my car’s tape player was forever breaking. With the nomination and almost assured induction of Nirvana, the weirdos win again. And I cannot let this year or this post pass without expressing shock and joy at the nomination of The Replacements. Of all the precursor bands to the so-called alternative music revolution that happened after Nirvana got famous, those bands that faded back into obscurity after it was so quickly over, I thought that only Sonic Youth would get any eventual recognition, and I still find their lack of nomination scandalous. So I view this nomination of The Replacements as nothing short of triumph, even though I am sure lots of people heard their name last week and said, “who the hell is that?”

But here is the funny thing. I know it matters a great deal to me, but not much to most people. All summer, I’ve worn my Nirvana t-shirt with the smiley face logo (see banner) on the front and the less offensive claim on the back that the band is “flower sniffin’, kitty pettin’, baby kissin’, corporate rock whores” (the other version is worse, look it up). People I interact with saw my t-shirt front and asked about Buddhism! Here’s this band that is still a great favorite of mine, that had this tremendous influence on my young 20 year old self, and on the music industry, and no one seems to know who they are/were anymore. Because I immerse myself in entertainment media, I’ve been barraged with details of the 22^ndanniversary of the release of their album “Nevermind”, the 20^th anniversary re-release of “In Utero”. I get a skewed view of the world, I think they mattered greatly. And yet, I constantly interact with people who do not even remember them.

It mirrors how I experience cancer at times. As a breast cancer patient with a tiny blog, who tends to seek out info that reaffirms a notion that Pink is WRONG, I sometimes get the sense that Pink, ribbons, and cancer are bigger issues than they are to most people. I have to remind myself that most people are not as tuned in to the issues, the lies of Pink and that is why they ignorantly continue to buy into it. I have to calm myself down—most people do not deal with breast cancer every day and do not know or understand that some breast cancer patients hate Pink. I wanna scream, “why don’t they get it, there are a million articles about how pinkwashing is damaging.” Well, because not many seek out that info.

Sure, lots of people are “touched” by cancer via friends and relatives, but it is only a small (hopefully growing) segment of breast cancer patients that have done the homework behind what is really happening behind the Pink-party-charity explosion. Just like most people are aware of a Rock and Roll Hall of Fame, but maybe, to paraphrase Nirvana’s “In Bloom”, likes the pretty songs, likes to sing along, but don’t know what it means.

To avoid being strangled by pink ribbons and all the surrounding bullshit, I’ve reveled in the news of the nominations. For the past several days I don’t think I’ve played a song on my phone that was not a Replacements song—yikes, better mix it up with songs by the other nominees! I’ll listen to “In Utero” for the millionth time, I’ll vote (maybe pointlessly) for my favorites on the Rock Hall website for the next several weeks; it is a great diversion. And when Nirvana’s living members accept their induction next April, I’ll try to remember that every once in a while, the outsider voice becomes the mainstream, and I’ll hope that the small segment pointing out all that is wrong with Pink can capture the attention of the world, without smashing any guitars.

“To truly love some silly piece of music, or some band, so much that it hurts” from “Almost Famous”, film by Cameron Crowe, 2000

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.

Complicated Relationship with Hope

My relationship with the word—and the concept—hope is complicated, like a love/hate thing. For the longest time, during cancer treatment, I hated the word hope. There. I’ve said it.

The reason for the hate is pretty simple: for me, it got tied up with all that Pink and Cancer-is-Positive goo that dripped from the walls of the treatment center. While the small (small-town) infusion room served patients with all cancers, most of the patient artwork on the hallways leading back to the infusion room must’ve been done by breast cancer patients. The framed poetry and artwork had all the familiar Pink signifiers, and “hope” figured prominently. Framed poems with pink squiggles surrounding the words, pink abstract paintings (with detectable words like “hope”, “strength”, and “courage”, of course), pink, pink, PINK. So, like a science experiment in which a subject gets a painful shock each time she encounters something normally considered “good”, I began to react to the word as if experiencing a painful shock. The word to me meant those beatific smiles, bald heads, feather boas and pinked out clothes. And I just did not fit into that oversold image, and never will.

I used to gripe about the word during support group meetings. The passivity of the word, in its verb form, just made me nuts—it still does. I don’t want to sit around “hoping” for scientists to come up with better treatment and a cure for my cancer. I want to push, scream in their faces, demand it—for all the good that would do (none, duh). I don’t want to hope people “get” how the reality of cancer is so different from that smiling Pink image, I want to tell the truth up front—again, for all the good that will do. My militant anti-Pinkness was beginning to form back then, out of my pre-cancer mild annoyance with Pink hype and selling. While I could not grasp and articulate what pissed me off exactly, I just knew something was off. “Hoping” was just not active enough. And I already knew that doing what actions I could do, was supposed to do—the eat right/exercise/don’t drink bundle of individual cancer patient responsibilities so we can later be blamed—were no absolute guarantee against cancer’s threat to me—just a way to make odds slightly better.

Having the noun version of hope is a little trickier. Everyone needs it, should have it. This rant is in no way criticizing or belittling folks who have it. It’s just that my hope has always been tempered with reality and a desire to avoid the delusion I think is harmful in the Pinkification of the cancer story. But here I have to question myself. I went for a mammogram at age 38 because my 48 year old aunt had just been diagnosed. “She’s too young,” I thought then. When my nipple inverted a month later, I told myself that despite the fact that family history meant a higher likelihood of my own cancer, it seemed ridiculous that I would get cancer at the same time, and at my younger age. “What are the odds”, I thought. Or was I hoping? I still don’t know what the odds are in my scenario. Doesn’t matter anyway, because I did have cancer, right then and there, 5 days shy of turning 39 years young. Back then, I did not know my chances were 1 in 233, rather than the ballyhooed 1 in 8. Still, as much as that 1 in 8 is used in fear-mongering marketing tactics, I would think, well, I’ll be 1 of the other 7. Or did I hope it? Does everyone think/hope they’ll be one of the other 7 (or 233)? I’d guess yes. Fear can drive us to mammograms of questionable usefulness, but the whole time we figure we’ll be one of the others, not a “1”, at least, not just yet.

So my reality-laced hope, or hope-laced reality, comes with thinking about odds and likelihoods, and yet I still seem to draw the short straw. Against hope and odds, I was a “1”, not one of the other 232. This fact was and is an effective destroyer of hope for me. To be fair, it is not just in matters of cancer I’ve drawn short straws. There’ve been many times of getting that short straw in other areas of my life that have taught me to hope that things will go the way of the bigger odds—but look out for that unlikelihood off to the side. It can happen, it did happen too many times to me, and I learned that hope is not so useful to me. Preparing for the worst, bracing myself, serve me better.

But I sit here today, waiting to get an MRI that will tell me if my cancer has returned, or if I’ve got a new one. I am utterly helpless, powerless, to do anything about it. The only activity I can engage in is to hope that I’m not joining the smaller number again, in this case the 30% of mets patients. Granted, my brand of hope is not the smiling Pink kind. My brand has a black rock group t-shirt, tattered jeans, black nail polish, greying hair, and a snarl. Because that is who I am—not an effen feather boa in sight.

What else can I do.

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