When Nirvana Went Number One

This post has taken me nearly 3 years to write. I kept starting and stopping because it is personal and about a difficult time I did not wish to revisit. I did write a couple of posts about that space of a week in 2014, when I was called back for additional screening, to be “sure” about a “suspicious area” on a mammogram that might have indicated recurrence. I wrote about my annoyance with the word “hope” (I still don’t really like the word) in Complicated Relationship With Hope, and about the outcome of that MRI (no cancer recurrence!) in Scar Tissue. I meant to publish this last September during the 25th anniversary of the release of Nirvana’s “Nevermind”, but the #BreastCancerRealityCheck event (hopefully the first annual) took my attention. So, instead I celebrate the 25th anniversary of that seminal album going to Number 1 on the charts, and it actually might make more sense.

For those unfamiliar with this blog and my details, here is the Cliff Notes version: I had my first ever mammogram at age 38 in the summer of 2010 because my 48 year old maternal aunt had just been diagnosed with stage 3 breast cancer, and her mother had been diagnosed, but not treated, as she was dying of heart disease several years before. Whether all that family history was not communicated to the person reading my mammogram, or WAS communicated and ignored, I guess I’ll never know. At any rate, he dismissed the large area of white present only in the image of my left breast as “density”, though I did not find that out until later–this was before all the legislation about informing women about their densities. I was sent a letter saying there was no evidence of cancer; 5 weeks later my left nipple inverted. Much scrambling to various doctors and all those different scans (ultrasound, MRI, PET, CAT) later, I was diagnosed with Stage 3 (spread to lymph nodes), E/P negative, HER2 positive cancer. This was on October 25, 2010, just a few days before I turned 39. Chemo, surgery, radiation and a year’s worth of Herceptin, I was finished January 2012. In 2014 I had to switch insurance, causing me to switch to a different oncologist, different hospital system, different place to get imaging. I’d had 3 or 4 MRIs during diagnosis and treatment, and this one went a little differently.

When I went to this new imaging place in 2014, I was armed with discs of all my many mammograms and MRIs, and I told them directly about that first missed diagnosis. I’m upfront about my lack of trust these days. So that might be why the doctor looking at my mammogram called me back to view the images, to tell me he wanted more images in the form of an MRI. I remember sliding down the wall when he told me this, like some damn over-emoting actress in a TV movie. At that moment I understood why those cheesy movies always included that scene; I suddenly knew the feeling of my legs just failing to work.

The week that followed while I waited for the day of my MRI I do not really remember. I just curled in a ball most of the time. The day of the MRI arrived and as I entered the room, before they put me in that machine, the tech asked me if I would like to hear any music while the test took place. I was stunned. You see, I often heard others, my aunt included, talk about having some atmospheric type music played while having MRIs–you know, the calming stuff I imagined to be similar to stuff that plays during a massage

So when she asked if I wanted music, I laughed mirthlessly and requested Nirvana, expecting the answer to be “no we only have…” and a list of some boring, supposedly calming Enya-style shit. But instead, she said, “yeah I think I have Nevermind”. And so I listened to that landmark record during one of the worst hours of my life.

 Let me back up and explain a few things.  I was a teen in the 80s, and loving the not-ready-for-radio stuff while living in a rural area was tough. There was no college rock station within range. All I had was MTV’S “120 Minutes” and a local rock radio station playing “alternative” (before that was a thing) from 10PM to Midnight on Wednesdays. So when Nirvana changed the music landscape in September 1991 and the grunge/alt-rock gold rush began, better stuff was suddenly on the radio. Why does that matter? At the risk of sounding like a grandpa bitching about the 5 mile walk to school in the snow uphill both ways, there was no Internet and downloading or streaming music back then–no social media to hear about new bands. Adding injury to insult, I was broke, working my way through my 3rd year of college in the fall of ‘91, I had a crappy car with a busted tape deck, so radio was all I had. When Nirvana pulled down that wall, music I liked was finally on my radio and my drives to class and work were less awful. Finally, the music I liked was accessible! Lots of people howled when the underground went mainstream–certain bands weren’t the cool little secret anymore. I get it, I myself still cringe and mutter “sell out” when I hear old songs I love in TV commercials, for a second, then I don’t mind it.

After I was ensconced in the MRI machine, the tech shuffled around, telling me her son had left her a bunch of his old CDs. I could not help but wonder–and I wonder still–about the odds of this happening, and how much slimmer the odds would’ve been if Nirvana had not become multi-platinum, radio-friendly unit shifters. Nirvana’s “Nevermind” was THE CD to own back in the day. How old was the tech’s son? Was he one of those kids that got Michael Jackson’s record for Christmas and exchanged it for “Nevermind”, thus dethroning that 80s superstar—as the old joke went back then? And then what happened–like me, he left his physical CDs behind due for our current download or streaming lifestyle? And whatever possessed his mother to bring “Nevermind”–a record which is a pretty far throw from some kind of Enya crap meant to soothe the nerves of cancer patients–to an imaging facility?

That day in March of 2014, it had already been announced Nirvana would be inducted to the Rock and Roll Hall of Fame–something I was pleased about–vindicated again that these scruffy small-town weirdos had knocked away the canned pop and hair metal bands. Spring 2014 saw lots of articles about Nirvana, lots of stomach-churning pieces about the 20th anniversary of Cobain’s suicide in the media. Meanwhile, my small world was shattering because I did NOT want to face cancer again–whether it was a metastasis or not. I wept silently while keeping still–NEVER move during an MRI–out of a stupid self-pity, and maybe a little for dead rock stars, which is equally stupid. I remember not crying when Cobain killed himself, I considered myself too old for that. Typical rock star story, I thought then. I’m a little less rigid now, and allow myself the tears. I still think it a typical rock icon story, and ultimately have little patience for Cobain or even Layne Staley of Alice in Chains. Great musicians, but I cannot forgive them their choices no matter how much I admire their talent. Yeah yeah, drug addiction is an illness, as is depression. I have that ever-present worry that most cancer patients share—the one in which we know it can come back even 15 years later—which causes me to always have that little fear inside that I may never reach 60, or even 50 years old. It may seem immature, but my desire to live and never have cancer again keeps me angry at rock musicians who throw their lives away. Having empathy and understanding of the nature of their diseases is even more difficult for me now, when I am supposed to be older and wiser. Hey, as I’m fond of noting, I seemed to only learn UNacceptable cancer lessons, and my favorite is my new view that patience is overrated. So I will not apologize for my impatience on this issue.

nirvana_band_logo
source:bandlogos.wordpress.com

In his 2014 book “Here We Are Now: The Lasting Impact of Kurt Cobain”, Charles Cross says, “The question of any performer’s impact is ultimately a personal one. If you were touched or moved in any way by Kurt Cobain, whatever drew you in is the key to what that legacy means to you now.” I read this book not long after that MRI. But is it really whatever drew me in back then still representative of the legacy for me now? Not so sure. Back in the early 90s, I had no way of knowing that I’d reach for those seminal Nirvana songs again in my middle age because I got cancer. And for sure, the songs still resonate with me, but mean something quite different. Certainly not what Cobain meant by them, and again, I don’t care.

So no, the legacy of Nirvana changed for me a bit, although I get what Cross meant in his book. There are things I hang onto in the darkest moments, like re-watching a certain movie or re-reading a favorite book when nothing else is doing the trick to distract me from the fear of my situation. These things are like comfort food, or a security blanket. It had not occurred to me during my 15 months of treatment to rely on favorite albums. Maybe I didn’t want to make an unpleasant association, like what happened with certain foods I ate during treatment. Luckily, that 2014 MRI was clear, I was and am still NED (no evidence of disease), so no awful association of cancer=Nirvana songs was created.

But I still think about listening to “Nevermind” during that MRI. Didn’t even get through the whole album (which is great, usually MRIs take for-fucking-ever). This hasn’t lessened my enjoyment of the record, and I’m still able to recall my 90s self more than my 2014 self when listening. (We love the music of our younger days because it calls to mind…our younger days, duh!) But the record is just a little different for me now. A odd dimension I cannot quite define has been added. Is it joy, because I should associate listening to the album during a test that ultimately brought me good news? Not exactly–the ever-present worry is still there (sure, I dodged the bullet that time, but what about the next oncologist visit/mammogram, and the next, and the one after that….).

I think I’m OK with “Nevermind” functioning as a security blanket against my cancer fears. It’s just something I never imagined happening. But it is no longer the record of my 20-something, what’s-with-all-those-angry-Gen Xers era, no, not anymore. I’ll always be aware of the music/pop culture significance of the record, but it turned into something both darker and lighter for me in 2014.

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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.

My Reality and Your Fairy Tale

I’ve never really had that one post about the dumbass things people say to cancer patients. The one time I started to write such a post, I wound up focusing on a small slice of all those irritating phrases—I focused on the awful, blame-the-patient phrase of “lost the battle to cancer”, and how much I dislike the euphemisms for death.

Books and many essays have been written about the dumbass things said to cancer patients, and I couldn’t really add to the conversation, so I lost my motivation to do so. Now that I’m a couple of years past my final Herceptin infusion, these dumbass things are not said to me, so they are not on my mind as much. And really, I’ve finally accepted the idea that sometimes what is said to cancer patients is really meant to soothe the cancer fears of the person doing the talking, not just the fears of the actual patient.

But I had the bad luck to reflect on one particular dumbass thing today; the phrases that reassure the patient that “everything will be alright,” or “my friend/relative got cancer when she was 35 and lived to be (some big number), and she was fine…never had any more cancer!”

I’ve had a lousy month, or maybe a lousy past two months what with one problem after another. The latest involves finding new insurance, and in turn, I’ve just learned I will need to find a new oncologist because my current one does not participate in any of my new, limited choices. I’ve been scrambling to find out which of my current doctors do what plans (the internet is a failure on this, gotta call each of them to get the nitty gritty details). Long story short, I got into a conversation today with the surgeon who performed my lumpectomy two years ago and asked her for suggestions for other oncologists I might try.

I think she actually thought I was considering just abandoning oncology altogether, just not even bothering to see one anymore, since I’m about three years out from initial diagnosis. She became a bit grave on the phone.  She told me I had a “very aggressive, serious cancer” and, given my younger age and the type of cancer (aggressive, fast growing, HER2+), I need to be in the care of an oncologist “for a long, long time.” That last phrase she said slowly and with great emphasis.

Yeah, I know. I need to see an oncologist twice a year for 2014 & 2015, and then once a year for the five years after that. It is a long time, and I hope I can reach 2021 to see my first calendar year free of oncology appointments. Honestly I’m afraid to let myself look forward to that day, it seems so far away. And I know my cancer was serious. I do not take my cancer lightly, and I’m not going to blow off getting a new oncologist because I feel fine right now, which I don’t anyway. Rather, I tend to suspect every twinge of pain, every change in body shape or function, thinking it means cancer is back. The sense of threat is real and sometimes very near the surface.

I really like my surgeon, maybe a bit more than I like my other doctors, especially because she is frank, no non-sense, and always gives me all the odds, probabilities, and facts sans sugar coating. But today I thought, great, I do not need that reminder now, when I already have bajillion other things sending me into panic mode. I began to talk myself down, to remind myself that just because I read blogs reporting various tales of recurrence, that isn’t necessarily going to be my fate as well. Then I thought back to all the times I heard people with their dumbass things said to cancer patients telling me it will all be ok in the end, because there is always so-and-so who just had a little cancer that one time and lived another 50 years.

There are so many reasons to dislike this little anecdote about the person who lived oh so long after that one little cancer incident. It is so dismissive of the very real fear and very real—sometimes high—possibility that cancer will recur in the person to whom this is said. While I do welcome anecdotes, because the small percentages or small likelihood stats (some of which I fall into) are made up of people, I still tend to consider all the possibilities. And this will sound so snotty, but when I weigh the tale of some random person told by some other random person against the word of my doctor, I take the word of the medical professional—who I give money to, BTW—over the random feel good story.

The words of my surgeon are my stark reality and the reality of many cancer patients, one that sometimes is conveniently ignored by those who wish to believe in the tale of the person who lived 50 or so more years. It isn’t a total fairy tale, but it may as well be for some. For those with Stage 4, whether upon initial diagnosis or recurrence, cancer is the rest of life, and that may be a long, long time, but probably not. For me, with my likelihood of recurrence, cancer is the 10 years from October 2010 until sometime in 2019 or 2020, if I’m lucky, and then who knows how many more years if that likely recurrence happens. Cancer does not claim my every moment right now, although it occupies more moments lately as I grapple with an upcoming 6 month check-up, that is, if I can get my insurance organized and get a new oncologist.  Right now, it is taking up a lot of my long, long time.

So to those who insist on the idea cancer is no big deal, that it will be tiny a blip and I’ll get another 50 years without incident—if you continue to ignore my reality, I’ll continue to ignore your fairy tale.

Hamster Wheel

I think a lot about the risks and statistics regarding cancer. I think a lot about past post topics, like how folks in the kingdom of the well just want people who have/had cancer to move on already, just “get over” all the cancer. I don’t think about these things on purpose, they just pop up, unwanted. This post is about how these seemingly unrelated ideas mesh.

For those of us lucky enough to be former cancer patients, as in NOT Stage 4, our lives become about reducing risk of recurrence—diet, exercise, eliminating bad habits, taking up yoga/meditation/acupuncture (if you can afford the organic foods and things like acupuncture). Do all these right things and maybe cancer won’t come back. Then again, maybe it will.

What no one ever seems to mention (at least as far as I can tell) is another percentage or increased risk. The more former/current cancer patients in my social circle (in addition to or in place of those untouched by cancer? I don’t know) the more chances are I will hear bad news more often.  It is just the way the odds are.

Sometimes with the various blogs I read or the few folks I interact with on the interwebs, plus those IRL, it means I hear more bad news than average, meaning more sadness.

Make no mistake, my sadness is NOTHING compared to what is felt by those whose news I’m hearing.

All I’m referring to here is the fact that by hanging out in Cancerland even while I have no evidence of disease, I am still wallowing in cancer, quite the opposite of “getting over cancer” which so many of those untouched by cancer wish I would do: “get over cancer”—snort of derision.

Being in Cancerland is like getting on a hamster wheel I cannot seem to escape. Every time I turn around, someone else is getting bad news, because that is the increased risk that comes with knowing cancer patients. Maybe in 7 years I can exit the wheel—after I get through my next 2 years of bi-annual onco visits, after the following 5 of annual visits, and hopefully after that I never see him or another oncologist again. And after I stop interacting online with other cancer patients. But right now I run on that wheel like a furry critter, chased by cancer, Cancer, CANCER. Whereas before October 2010, cancer was hardly a blip in my consciousness.

I don’t know what to make of my increased risk of hearing bad news, either for myself or for others. In a conversation with Tumblr buddy Greg, he pointed out we have to celebrate the rare bits of good news, because they are indeed so rare in Cancerland. Most of the news for me has been good, but I find myself thinking often of those who keep getting hit with the bad news.

I’ve often pointed out on my blog that I am not sentimental, that I do sarcasm far better than true emotion. It is difficult for me to express words of encouragement or support or any of the other things those in pain need to hear. I think I never come off sincere, even when I am at my most sincere. So I tend not comment to others these messages, because I find words so inadequate at those most awful times. But I am heartbroken for all the sadness I hear about, I want the reason for the sadness to just STOP already. It really is that simple.

So to those reading who are Stage 4, and/or who’ve had recurrence, take this post as my message of support.

And I’m not stepping off the wheel today. I’ll keep my risk for increased chance of sadness high for now.