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.

 

Friend or Enemy?
Friend or Enemy?

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:

listening

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

“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) Cancermy 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 22ndanniversary of the release of their album “Nevermind”, the 20th 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