Do NOT attempt to keep repealing The Patient Protection and Affordable Care Act. Yes I used the real name, to remind us all what it was meant to do, even though, yes, it failed on some counts (more on that in a minute). I will NOT use the nickname everyone uses derisively, although I am forever grateful to that president.
I am tired. I am tired of living on tenterhooks. I am tired of my phone buzzing with various news alerts, and the constant notifications of tweets by Andy Slavitt, Sarah Kliff, and others fighting the good fight, explaining what the hell is happening, how it will impact regular and poor Americans like me. I’m tired of worrying ALL OF THE TIME.
I know, I know. I could turn off phone notifications. I don’t have to wade into Twitter, to be so involved. For starters, I am utterly dependent on ACA remaining the “law of the land” and I do not have the luxury of tuning out. I worry when the notifications are NOT happening too. I have to remain involved and engaged, to do whatever I can, no matter how small. It is frustrating I cannot do more—I would’ve been in Annapolis or D.C. today for Lives on the Line, but I have to work. That’s the breaks you are poor, you are a member of the gig economy and you have to hustle all the time. I just want to slap people who tell me to “turn it off” for a bit. I always notice the people who say that to me can afford health insurance, can afford my services, can afford to go on vacation.
And frankly I am proud to be involved even the little bit I can. I get up every morning and search the news and tweets. And it is horrible. Then I write the tweets for my local Indivisible group. I want to do this; NEED to do it. Because I’d be reading that stuff anyway—might as well use it, make a small contribution.
Since November I have not had one night of sleep in which I did not keep my mouth so clenched I did not wake up with a headache. The past few months have been alarmingly like the two weeks in early 2014, when the new imaging center I used thought I had a recurrence. That wait for the MRI, then the wait for the results–agony. I could barely function. The only thing different now is I’ve learned how to function a little bit.
But I am always in a shitty mood.
There was a tiny bit of reprieve early Friday morning, when 3 Senators voted no. And nearly 48 hours later yet another, a new proposal is being floated to once again repeal the ACA. On top of that, as I write this, the wanna-be Dictator is threatening to de-stabilize the insurance market. Does anyone even understand they are playing with our lives?
THIS. IS. NOT. A. GAME. You all are threatening my life. And I don’t just mean “life”—why is death always the metric. I mean how I die, with a roof over my head because debt hasn’t rendered me homeless.
I’ve written on this blog a little bit about heart disease—readers will know my family has a history of heart disease. My maternal grandmother was diagnosed with breast cancer (left untreated) while she was dying of heart disease. This was one of the reasons I was so blindsided by my own diagnosis. I get frustrated that women’s heart disease awareness movements “use” breast cancer to prove that heart disease is the bigger killer. But right now, I’m thinking this stress will give me a heart attack, maybe I should worry about cancer less? Will I survive a heart attack? What with all the heart damage Herceptin gave me?
The constant stress this administration causes me might kill me, and I’m not being hyperbolic, I HATE hyperbole (though I’ve had to use it lately). Maybe that is the plan—then I guess I won’t care if the ACA gets repealed.
And to be clear, it is this constant living in limbo that I’m speaking of here right now. I’m not even going to touch on the other stuff happening that is giving me worry—the threats to freedom of the press, the clear direction to authoritarianism that we are taking, my very real fear that the American democratic experiment is ending.
So I beg this Congress, stop it. Be the deliberative body you are supposed to be. Who do you serve, WHY do you serve? It isn’t supposed to be about “winning at all costs”, it’s supposed to be about serving us, The People. When so many people are telling you they will hurt—LISTEN TO US.
Yes, I know the ACA hurt many people. So figure out a way to fix it. I cannot believe I am advocating for, or defending insurance companies—the people I fight with on behalf of a provider (as a medical biller). There is a great deal of work to do, so stop with the shit-proposals. Find the way. You are supposed to be smart.
So please, Members of Congress, hear my plea. I want to live. I’ve lived through cancer, I know how much it costs (yep, even before the ACA it was too expensive—Obama didn’t cause that, greed did, read some literature about this). If my cancer comes back, especially metastatic, I’d like to live as long as I can, at least comfortably. I’d like to NOT bankrupt my family. Everyone threatened about government death panels back when the ACA was being written, remember that? Do you even understand that YOU have become the death panel now?
Yep, I will be talking at y’all live on Wed, May 31 via a Breast Cancer Action webinar. As a panelist for The Case for Universal Healthcare, I will tell my experiences as a breast cancer “survivor” in the gig economy, in a rural area without a lot of choices in healthcare. BCA kindly asked me to provide the example of how policy impacts real people. Diljeet Singh, MD, DrPH, gynecologic oncologist with the Mid-Atlantic Permanente Medical Group and national board member of Physicians for a National Health Program (PNHP), will do the heavy lifting, and explain the real details we all need to hear.
As a life-long resident of Maryland’s Eastern Shore, you’d think I have the accent like so many other here have–sounding like I got a mouth full of crab cakes and oyster fritters. I don’t–at least I don’t think so. I think y’all will be able to understand me. I do get angry about this topic though–so, um, be warned, I’ll try not to sound too strident.
The thing is, blogging suits me. I’m much better at going on and on and on here in written words. I’m naturally shy and introverted. Being this public and actually talking to strangers is difficult for me. But the stakes are just too high, so the choice was clear for me to accept BCA’s offer.
I have tried to keep politics out of my blog to a degree. But in November that began to change. And a few weeks ago, the House of Representatives made a threat to my life. I’ve always loathed the “warrior” language in cancer; but I use words like “fight” so much more now. Because I AM fighting, very hard. I was complacent before–not anymore.
I know some of you out there do not agree with my politics, and that’s one of the reasons I’ve just kind of stopped writing this blog. It’s just too complicated and I found other outlets for my anger. But I do think this is an issue to be discussed. I hope you’ll come hear me out. See where I’m coming from here.
There is still time to sign up HERE–and if you cannot tune it at the appointed time (6 PM Eastern), you can watch it later, but you gotta sign up!
I’ve been absent because of American politics. As I’ve mentioned on Facebook, I am working on a new blog to channel those thoughts elsewhere so I can keep some of the divisive politics off of this blog–but there WILL be some crossover.
I’ve been busy with a couple of other politics-related projects but will return soon. Until then, a re-post for a reason.
A/N I started this post a week or two ago, but thought it would be taken as offensive. But I read a couple of things since, including Nancy’s Point and some horrible comments on Huffington Post that have renewed my desire to speak out to explain why, for me, sugarcoating death is so repugnant. Please click the link and read Nancy’s post, as well as the other post she links by Dr. Wosnick. Those are much nicer, more eloquent thoughts than the ones I express here. What I’ve written here still is a bit offensive, I even offend myself with it, but I think the topic is worth discussing.
No I do not mean dirty words like the f-word or the b-word (you know I have no problem just putting those actual words in here). But I meant death/dead/die.
It is strange that we avoid saying dead or died, yet, at least here in this rural area in which I live, some mourn quite publicly for a long time, perhaps morbidly so. On any given day I drive down a road and see at least one car with one of those “In loving memory” stickers, complete with date of birth and date of death. Or I see those tiny imitation grave sites that develop at the site of a car crash, off to the side of the road, complete with flowers, pictures and other kinds of things one puts at a tombstone (I assume other trinkets are also at a grave site) . So, those who engage in this very public mourning and memorializing are acknowledging quite obviously that the loved one is dead…yet in conversations many would say “so & so passed away”? In the example of the stickers on cars, it looks like an advertisement that the person is dead, but no one will actually say “so & so died”.
Why do we avoid saying “so & so died”? We say we lost someone, or they went to the light, into that good night or—hell I’m guilty of it too, I once said right here on this blog someone was “gone”—as if he just went to the store for milk or something. See how quickly my mind changed about the euphemisms? Lost is the one that really disturbs me, because in my literal mind, I may know that the person is dead, and I immediately assume the body was misplaced.
I find these euphemisms silly, and annoying. I especially hate them in Cancer World, where there are combined with the warrior/military language. Given the fact that both here on my blog and in real life I’ve been called “honest”, “candid”, and “direct”, is it really any surprise that I say any of this?
Oris it justin Cancer Land that the battle phrase is used? I’m not sure I’ve ever heard anyone say their friend/loved one “lost their battle” to heart disease, to stroke, to complications from surgery, to old age (although many of us wage war on that one, don’t we, with our make-up, night creams, etc.?). Although I will say I often hear someone had a heart attack. “Is he ok?”, “No, he passed.” See, no d-word again.
But of course, the battle language of cancer must be upheld, and it is all part of the blame-the-patient package. The patients must be responsible for all aspects of their special cancer…their poor diet/drinking/not having kids caused cancer in the first place, and in the event of death, it is NOT due to the treatments not being effective enough, oh no, it must be because the patient had a bad attitude and/or did not fight hard enough, therefore making him/her a loser.
The reason I insist we need to say the d-words is because it needs to be up-front-and-in-your- face that cancer kills, in an active, personal away. To say one of us lost the battle, like we are bad soldiers, is an insult. It has been said before and I simply parrot it here: I’m NOT a soldier although I suspect my body is a battlefield in which cancer and treatment fought one another bitterly. I was just kind of…there, getting the environmental impacts, like a scarred landscape for instance.
Like Nancy’s mother I do not want the obituary to say I passed away after the battle with cancer (although I do not presume to know why she said that or what she wanted instead). If I die of cancer before I reach the average age at which American women die, then it is cancer that killed me and I want that known. I want it known that cancer killed me, that medicine and lack of research into prevention failed me, I did not fail in the war.
So for me, no passing away, no losing of any battles, no raging against the dying of the light. Death from cancer is not the time for poetic language, if I’m the one doing the dying.
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.
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.
Most will have noticed I changed the header on this blog page and this blog’s Facebook page to a Carrie Fisher quote. I’m not tired of my Johnny “Rotten” Lydon quote—I likely never waver from his “People like their safe world. They don’t like realizing the way things actually are,” theory. That really applies to my view of the cancer-you-must-be-positive experience. And really, isn’t it just a punk version of Nietzsche’s “sometimes people don’t want to hear the truth because they don’t want their illusions destroyed”?
Fisher’s observation, “I think I do overshare. It’s my way of trying to understand myself. … It creates community when you talk about private things,” is really what my blog is about anyway. I’ve often worried that I lack conviction in my blog posts—it seems I’m usually raising questions without answers, rather than ranting or making pronouncements anymore. Most of my entries seem to be me trying to figure things out. Sure, when I began, I was all about loudly criticizing the Pink rah-rah attitudes—and I still hate that crap. But nowadays I want to look deeper, really dive into how this stupid cancer culture exists and possibly how it can be changed—maybe by trying to understand it. For example, it is no longer enough for me to loudly proclaim how unfair or ridiculous the competition between diseases and cancers is—I wish to understand it, and point a finger at myself for sometimes participating is such a useless and petty practice. Or rather than just shouting “down with Pink rah-rah”, I wish to acknowledge—and to figure out how to live with the loathsome sexualization of my disease—all the nonsense which contributed to the creation of medicine that has prolonged my life.
These are my private thoughts—am I building community by my overshare?
On the interwebz, many bemoan 2016—calling it the worst. It isn’t, of course. It just so happens the people in my social circle tend to be like-minded and in my age range, so these celebrities that have died meant much to us. And of course many share my horror at our current political situation on the US. So yeah, 2016 is kind of the worst for some people.
I know it is silly to mourn a celebrity I didn’t know. My next blog post, the one I meant to put out here this week, will touch on that in a deeper way. But I saw a great tweet somewhere along the way pointing out how it is NOT silly to mourn celebs/artists, because they often helped us figure ourselves out.
That sure is true, or at least, some of these people were like a timeline for me. My mom was a big Bowie fan; he was part of the soundtrack of my life before real memories were formed. Carrie Fisher was my childhood. I’ve often written of my stupid “Star Wars” admiration. Seeing that movie in the theater when I was 5 or 6, it was and remains the single biggest life-changing experience—yes, bigger than cancer! Of course now as an adult I understand all the hero’s journey/Joseph Campbell stuff. But back then, I just understood it the way it was meant—all the good vs evil and mythical themes. And of course consumerism, ha ha! I still have my action figures!
Just last week I managed to see “Rogue One”, and then re-watched “The Force Awakens” (only my second time seeing it, and I’m sure I’ve seen the original trilogy hundreds of times, even when they’re on TV, just in the background). I thought to myself how great it was to see a female in the lead or hero role. And especially the diverse cast in “Rogue” (love, love, love Diego Luna for a long time now). Of course I never questioned Leia’s military position in the original films. Sure, she was “rescued” in the first one, but she never seemed like other Disney princess types. Still, Rey and Jyn are much better now. It feels like those people making the films now know that little girls like myself were buying those action figures too. So while the films are not perfect (man have I read some bad reviews of “Rogue”), for me they are simply gratifying. I, as a female, am also part of the “Star Wars” geekdom, and am relevant.
Prince and George Michael of course were my pre-teen years. I didn’t love Michael as much as the Duran Duran guys. And it was because of Wham and Duran that I bought Teen Beat (or whatever) and found The Cure, The Smiths, Depeche Mode. Which, in turn, sent me down the path of punk and what was then called “college rock”—and made me the weirdo I am today. (Well, Prince was always on the weirdo side, even when he was the top selling artist.) In my alterna-girl phase I rejected Duran and Wham, and even Michael Jackson and Prince to a degree. When I became an adult I re-embraced all those things, recognized the artistry, the brilliance.
TL;DR version—yes it is fine to mourn celeb artists because they help us discover ourselves. Writing this made me realize just how much and how deeply shaped I was by these folks. Prince in particular, has cast a pall over the year for me. I wasn’t a huge fan, but I did consider him a bit genius—and I don’t use that term lightly. I truly thought him special and it just seems unbelievable he could die, like ever.
Of course, reality sets in. I don’t call these people heroes or idols—I don’t like that. Idolizing someone dehumanizes the person—and they are only human. And I realize how odd it is to cry over celebs when there are so many metastatic cancer patients that deserve to stay alive—and that is where our energies must go—finding ways via advocacy to make that reality.
Still, Fisher’s quote resonated with me deeply. I heard the “Fresh Air” interview when she said it. Likely I was busy working and didn’t take time to jot it down. Just because she died does not make it more true—I just happened to see the quote pulled out, NPR posted it after her death. And it just seemed right to make it my header, to acknowledge that what she said a few weeks ago sums up quite nicely what I’ve been trying to do since I started this blog 4 years ago.
I’ll go back to my snarling, punk rock Rotten quote soon. But now seems like a good time to recognize I’ve been following General Leia Organa’s example all along.
Long-time readers might have noticed I don’t write many posts about how to handle anything at any time holidays and cancer. My view on this time of year is a bit….meh.
Oh I like hoopla and stuff to a degree. I love Halloween, as I’ve said here more times than I can count. But the Thanksgiving to New Year weeks are, um, different for me.
Let me back up. As I’ve said a few times on here, I am a pet/house sitter, and before I went full time into this business I worked non-profit, and before that—dun dun duuuuuuun retail hell. Back when I worked retail, as soon as January arrived, the outlet mall—at the beach—shortened the open hours. It was a nice reward after a hectic season. Can I be blamed for looking forward to those quiet winter months a little more than the big red and green holiday that everyone else loves? As a store manager, there were other bonuses—having a less complicated employee schedule to create being one of them. I started the house sitting while still in retail, and yes, my easier, month-long gigs happened as the older crowd took looooong trips in warmer southern areas after the new year began. Christmas was, and is, always hectic—lots of people trying to schedule me for overnight/weekend stays, or for hour long visits on the actual holidays. I work harder on Christmas days than most other days of the year.
One of my favorite films is “Holiday Inn”, with Bing Crosby and Fred Astaire. Bing’s character had a similar complaint about working more on the holiday. He goes on to buy a farm, finds out that it’s hard work, converts it to an inn only open (with a floor show of course) on holidays. The rest of the year he closes up—so he can be lazy. (See more at end of post.) In short, maybe that film is a favorite because I related to Bing’s complaint.
So you see, when other bloggers are writing about resolutions, or handling holidays with cancer, or writing messages of hope at this special time of year, I’m either too busy to notice, or just thinking about my usual curmudgeonly complaints—because in some aspects, these days are not much different for me. Just another day of work—actually a harder day. But I try to be aware—I had a few harsh/challenging posts lined up and realize most people don’t want to read that sort of thing right now. I’ll wait until after the New Year.
The funny little thing about the holidays is, well, I find them a bit disruptive. So much of my life revolves around routine. Not that changing up a routine isn’t a good thing—it is. But when there is illness, well, routine is a friend. As I’ve mentioned a few times, my primary pet sitting client has Chronic Lyme. About 2 years ago I became less pet sitter and more human caretaker. Her day is divided into a schedule of taking antibiotics, probiotics a few hours later, medicines to alleviate the hell these medicines cause the stomach, and eating. I begin at 6AM and it ends at 8:30 PM. My day is divided up into alarms that tell me when to take her meds to her, or prepare a meal. In between times I often take her to appointments, take care of household matters, and yes, care for the dog! I do these things Mon – Fri, so her primary caregiver, her husband (who also has Lyme, but not chronic), can have a break. For me, life is The Schedule.
Here’s the thing: The Schedule doesn’t budge for weekends or holidays. The things that happen, the medicines to take, they happen every damn day. There is no day off.
I remember in 2010, I had my last infusion of The Red Devil that week between Christmas and New Year’s. Needless to say, I didn’t much give a shit about all the festivity around me. I resented the closed doors for the holidays—the disruption of the schedule, because I just wanted to get finished. I was scared and afraid if I missed a day or something, the drugs wouldn’t work, and the cancer would continue to grow. My rational mind knew that it didn’t work like that—this was just FEAR in overdrive.
My point is, disease doesn’t stop for the holidays, and it is a bit unfair to expect cancer patients, or anyone with illness, to just put it aside and join the fun. I don’t mean to be a wet blanket. And yeah I know, life goes on, can’t expect the employees (doctors and all) to ignore Christmas because of all the cancer patients. But disease goes on too—holidays be damned.
I could go on and on. One silly pet/house sitter story related to holidays being disruptive includes how garbage collection day gets messed up, which adds to my list of tasks—trying to find out why a client’s garbage has been ignored for over a week—calling the collection company on behalf of the client and being told since I’m not the homeowner (I didn’t have some account number or password to verify paying customer status), nothing could be done. Because yeah, I’m a random person gaming a system to cheat the company out of garbage collection. Eye roll—everyone knows the best way to get out of paying for garbage collection is to take your trash surreptitiously to an industry or mall dumpster—I see this done ALL THE TIME. It’s a million little stories like this—they actually happened to me—that make me leery of holidays. I just get a longer list of work tasks each Christmas. I learned long ago to not really care much about holiday frivolity, and just get my (extra) work done.
So forgive a Cancer Curmudgeon for the lack of holiday themed blog posts. I just don’t have much to say about this set of holidays. I’m not whining about it—I chose my work and it makes me happy. Having no religious affiliation makes it easier as well. All I’m saying is—hey I get it if people with illness just find all this stuff a bit disruptive. Some folks find solace in putting away their worries for a while during the holidays and that’s fine. For others holidays magnify troubles. Some, like myself, find it to be just another day, and maybe a little disruptive. Personally I look forward to less hub-bub that the boring next few months can bring (so long as we don’t get any snow in my one snowplow beach town).
The work of cancer advocacy will still be there next year, after this short break.
***The other funny thing about “Holiday Inn” is how wildly the Bing Crosby character underestimates the “quiet farm life”. He has a nervous breakdown which inspires him to turn his place into the holiday inn. You see, those cows don’t give a shit about Christmas, they still gotta be milked. So while he sought to escape his showbiz NYC life with 2 floor shows on holidays, he failed to see the reality behind some stupid image of quiet country life. I see some of that in my own area. People retire to this rural beach community and take to lawn gardening with gusto. Then the upkeep of a big lawn (or the cost of having a service do it) lands on their head and they downsize to a senior living community in which that stuff is managed. Mowing the lawn seems novel until one has to do it all the time. They were so blinded about getting out of the hustle and bustle of city life, so blinded by the idea of slower life here, and well, learn a lesson. I’m a “from here” and the “come heres” always marvel at how infrequently they get to the beach upon actually moving to it. Don’t I know it! I didn’t spend one day just lying on the sand in 2016. Maybe next year.
I’ve written before about all that advice one gets at the time of diagnosis–mostly about how much I dislike the “avoid the Internet” cries. Some bits of advice worked for me (don’t eat anything I love during chemo, I’ll wind up hating it–yeah, kind of true for me & suck on ice chips during infusion to prevent mouth sores–no didn’t work for me). One other bit of advice I cannot quite make up my mind about was the clothes.
My friend/guide (who died of metastatic ovarian cancer a few years ago) advised me to wear shirts with a few buttons at the top during infusion to provide easy access to the port. Yeah, that was pretty good advice. A few breast cancer-centric groups/pamphlets advised button up shirts for after surgery, as it would be difficult to pull shirts over the head after mastectomy or even lumpectomy.
Here’s the thing–I hate button up shirts. I’m more of a casual, pull-over type of gal. Even when I have button up men’s style pajamas, yep, I leave it buttoned and pull the top over my head. I just hate messing with them!
I’m fairly certain I heeded some of the advice just after my surgery. I seem to remember going back to my pull-over shirts as soon as I felt able.
The thing is though, I’m one of those people who has to wear an item of clothing out before tossing it. Or, since I’ve gained so much weight post-treatment/post-menopause, I have to really not fit into it before donating. This is in spite of hating those button up shirts. This is in spite of having bad cancer memories associated with those clothes.
I realized recently I’m down to 2 items of clothing from that time. One is a pair of soft, comfy yoga pants I remember I wore nearly every Herceptin infusion day. I mean, in the beginning, while on the Red Devil, right after I was diagnosed, I tried to wear jeans, look like I was just going to the store of something. I quickly learned not to give a shit–to just be as comfortable as possible. I think everyone knows I’m not the heels and boa wearing kick ass warrior type by now. Amazing the damn things still fit, considering my weight gain, and how much I’d lost during treatment.
The other item is this set of Christmas pajamas. I still have them, wear them even, despite the bad association–hating Christmas 2010 because I was still “newly” diagnosed, and sick and so, so frightened. I still wear them even with the damn buttons–and yes I just pull it over my head, buttons be damned. I don’t hate them, I tolerate them.
But the other day I found a hole in the leg. I think after the new year begins I’ll let them go. Besides, I have a nice Darth Vader onesie type thing. It has no bad memories (the prequels, Star Wars 1,2, and 3 don’t count). I don’t have to button it up or pull it over–I step into it and zip up.
And rule the Galaxy! Just kidding.
It’s nice to get rid of these cancer associated items. Even if I do have a hard time throwing stuff out.
“OMG I’m gonna stick a sign saying ‘Oh yeah, when?’ on their marquee, because they are NEVER gonna open!”
What caused my childish outburst a few weeks ago? A fresh fish store that was supposed to (re?)open this summer, and failed. All summer long the owners put little phrases on the sign in their parking lot near RT 1. Stuff like “We swear we’re opening soon,” or “Summer 2016!” It was October and the new fish market was so NOT open.
Of course I was being silly–I work in a resort area, I was driving my Lyme patient to a medical appointment on RT 1 which runs parallel to the Atlantic, and there’s a fish market like every two minutes. In short, I got choices and NO reason to get so annoyed about one silly place—other than I saw the sign nearly every damn day.
It was just that the constant sign updates annoyed me. I wanted to challenge their little missives about opening soon. And I wanted to do it right on the lying signs rather than making a bitchy Facebook post that would not matter to the majority of my FB friends. My why-aren’t-you-open challenge needed to be right in their face, in everyone’s faces, as they motor down the highway!
My fuss about signs one sees while driving on the road triggered a mild discomfort in my Lyme patient. She’s a staunch anti-Trump liberal, as am I, though at that moment it wasn’t my big problem. With my crazed outburst we again, for like the millionth time, talked about how wrong and illegal it would be to mess with Trump/Pence signs in residents’ yards. And as I’ve stated many times, I live in a rural, red, area–so those signs were just everywhere. We talked about, again, how wrong it is to violate personal property or at least stuff on personal property.
All this made me have a small flashback to my early blogging/post-treatment days. I’m sure I’ve made some offhand remarks on my blog here (and elsewhere) about my desire to just either pull off or deface any of the pink ribbon/rah rah/find-the-cure ribbons I saw on cars. I thought it would be great if some covering/addendum sticker with a message would get created. Like a “what about the women’s lives” sticker I could stick next to those damn “Save the ta-tas” stickers. But duh, again, personal property. So I practiced, and still practice, restraint.
I am “mostly” beyond that now. I’ve written about the wince-inducing run-ins with the stickers tho’ (see 365). I still have to work at suppressing the urge to deface those stickers, but it is less difficult.
I’ve had to work harder at restraint to not deface the Trump/Pence signs, especially when I see that others have already done the work—rare in this rural red area in which live and work (the states in which I live and work, Maryland and Delaware respectively, were blue on the maps, but only because of the metro areas, not the Delmarva section where I am).
Yes, I’ve tried to restrain myself from talking politics on this blog (as mentioned in my first 15 Things). I will continue to do so, but it will be more difficult. You see, with my cancer, my health, and my economic situation—the personal, the cancer personal, has become political.
I’ve shared very little of my economic situation here because I don’t think it is anyone’s fucking business but mine. Suffice to say as a self-employed, VERY small-business woman, I don’t make a great deal of money and rely on those subsidies. I was happy when Trump was the candidate because I thought with his outrageousness, he would never be elected. Good, I did not want Republicans with their constant tries to repeal the ACA, in power. See, it isn’t just him that is scary; it’s Paul Ryan and all the other creeps.
And here we are, and ACA is likely on the chopping block. I’ve read all the think pieces, listened to all the whiny podcasts about “what went wrong” and “what can we expect”. I’ve no faith in the “replace” end of the headlines. I still have fear. I face financial disaster. If I experience recurrence, I cannot afford much; I am of the mind to just not try any treatment. Why leave my parents in a debt they could never re-pay? These are the terms in which I think now.
I’ve been depressed since the election. I can tell. I see something that would normally interest me and think, “WTF does it matter now?” I have no sense of humor or fun. I care about very little. Lately I’ve begun to force myself to engage a little, get out of my head. But my anger and hurt is still so, so great.
On November 9 I wrote a very awful post that obviously I did not publish. It was filled with the blackness that still threatens to fill my heart. Let’s just the say the calls for reconciliation of our nation, the calls to listen to each other rather than shout, that shit don’t reach me. I’ve lived my whole life among the type of voter that the liberal elites are trying to finally understand now and I know they won’t listen or care. Unless my kind of disaster happens to them, and even then, they might still not “get it”. So my empathy is at an all-time low right now. Of course, as you can tell from that statement, I am just as unforgiving of the “liberal elite” as well. I wanted to spit nails at Garrison Keillor’s post-election WaPo essay with the “let them (the poor WWC in flyover country who voted against their interest and might not get what they bargained for here) lie in the bed they made” attitude (please tell me it was satire). I get the point, but I lie in the bed too—and the bed is not of my making.
Perhaps I was a fool—the personal was always political and I was silly for thinking I could keep it all separate. I don’t know. I will try to practice restraint when it comes to politics here on this blog and on other social media. But I make no promises.
On October 31, as I distracted myself with Halloween’s glory, I asked myself: “what do we become aware of this month?” Lots of Facebook posts ask that question, I asked it on Twitter I think. So much sound and fury in October, but does anyone learn anything? I think not.
I forced myself to remember the days before diagnosis. I know I never thought all the pink rah rah crap was great–that’s just a core trait of my personality. But what did I know about breast cancer, and the awareness push, before diagnoses?
This is a tough question to answer. I’m not sure I fully know the answer. I know I absorbed the “early diagnosis/screening” messages. I knew enough to ask for a mammogram earlier that the suggested age (40 at that time), but I still regarded breast cancer, any cancer, as an older person’s disease despite knowing actual patients my age. I asked for a mammogram because I knew I had a higher risk with family history-my aunt had just been diagnosed for heaven’s sake. I knew about ribbons, especially red ribbons (AIDS) and pink ribbons. Did I know October was “awareness” month? Maybe–but it did not “click” with me until the late 00’s.
The incident that made it click with me–well, I’d buried it. I was working in for a non-profit arts organization. Doing film exhibition with local community organizations. In the summer of 2008 or 2009 I began working with a women’s business group. My point collaboration person was suggesting topics for me to find films for our October event. I remember her telling me October was Breast Cancer Awareness Month.
I remember being surprised by that–what a dumb month for such a thing! Let me explain. As a lifelong resident of a beach town/resort area, with my first post-college job being in retail, I had a list of hard and fast rules and truths. Painting October Pink was stupid in my mind. Lots of local “runs” took place in April/May/June anyway–wasn’t spring better for Pink? I’ve lived my life by the ebb and flow of tourist traffic. Panel season, or off-season, events were in a strict path. There was the Greyhound rescue dog weekend, Jazzfest weekend, Seawitch, etc. in October. Where I worked, the annual film festival was the second weekend of November. I had no time for anything else–October was full of deadlines in preparation for this main event–a time of no sleep, no fun, no nothing. I measured these things in amounts of car traffic (for my work travel) and the likelihood of whether I could schedule an event and get any butts in seats during those event weekends (likely not). BCAM had maybe a marathon in one beach town–but there was always a marathon each weekend (bikes the worst, as they interrupted traffic the most, adding to my work travel time). I had no time for breast cancer, awareness, or a month of it . But sure, if I could find cheap film to exhibit about it, I’d see what I could do (this was before the release of Pink Ribbons, Inc.).
I don’t remember what films I exhibited–none about cancer I’m relatively certain. I moved on, forgot about this, got cancer, and now I remember it.
But here is the other thing I’d submerged, and am just now dredging up–a sort of painful memory.
I skipped the main event in 2010, having just been diagnosed, and preparing for the Red Devil. In 2011, I returned, managing over 1,000 volunteers for the annual festival, among other things. I had completed chemo in January of that year, radiation in the summer. I was still doing Herceptin every 3 weeks and my hair was curly and short–just returning. I was exhausted and felt horrible. I ran into the women I’d coordinated with for that event of a few years prior. She laughed and asked why I’d cut my hair so short (I’ve always worn it long). “I had cancer,” I replied curtly. She laughed for half a second then sobered up when she saw I was NOT laughing. “Breast cancer?” she asked. “Yeah,” I grunted.
So here was this person, so into “The Cause” but what did she really know about breast cancer? Breast cancer was a thing to worry about–but a thing that happened to other people–not ones we knew, not ourselves. Breast cancer was a thing to promote because an audience “cared” about it. But not “real”.
I realize now how much this informed my view of BCAM–this ignorance. It’s something to care about, to SHOW care about, but it always happens to someone else.
This is likely part of my disconnect with such hollow shows of “solidarity” of “Support”. Those things are meaningless to me. The Pink events–they have little to do with What Really Happens.
I hold no ill will toward this woman–how could I? I was just as ignorant, just as “that won’t happen to me.” I don’t even remember her name, or the organization, and don’t feel motivated to research it. It doesn’t matter. It was just a memory that popped up Monday, unwanted, as I tried to get ready for tricks or treats.
My point is: October and BCAM, those are just “things to do”, the way we do other “holiday” things: buy candy for trick or treaters, buy a turkey and fret about ignorant relatives, succumb to shopping holiday madness, and make the obligatory weight loss New Year’s resolution.
And that is what I hate about October as Breast Cancer Awareness Month: it has become a rote obligatory motion we go through–not real. Except to those of us who had the dumb fortune to get breast cancer.
My entry into the #WhyIsThisPink fray is a bit different but important to me. I get that most submissions are the silly, pinkwashed items created simply to fatten the bottom line of corporations using the color to get some goodwill from mostly female shoppers. So why have I chosen to submit here a picture of the cancer center where I was treated, all aglow from the soft pink light shining on it for the month of October?
I do not understand the need for breast cancer awareness…at a cancer center, for crying out loud. A building that exists as a place to treat cancer patients is the epitome of all cancer awareness. Thus, a pink light becomes overkill, a pink light becomes the favoring of patients with breast cancer—their lives? their money?—over all other cancer patients, a pink light becomes the shoving of a cause down many gagging throats.
I still hold the same opinion. Yes, businesses selling alcohol, deli meats, and cosmetics (all things that might increase cancer risk), are worthy of calling out. But a cancer center bathed in pink light–a center that does NOT use other colored lights in other months–is far worse to me.
No, I’m not flirting with conspiracy theory here–this isn’t some Big Pharma/Medical Industry-is-withholding-the-cure-because-it’s-more-lucrative-to-keep-cancer-patients-in-treatment tinfoil hat kind of thing. I revisit the medical industry ethics as I’ve done before in Medical Obligations and SELL!. It is important to keep in mind how hospitals/cancer treatment centers sell their services with some of those questionable messages: “your cancer can be an opportunity for personal growth”. Or the how the existence of breast care ONLY facilities make breast cancer a proxy for all of women’s health, when we all know heart disease is the actual number one killer of women, with lung cancer coming in at number two. Medical institutions emphasizing breast care to play into fears of women rather than correcting those fears (to get their money?) is tantamount to medical misinformation. And the result in me is even more mistrust than I already had.
I’m aware some medical professionals object to being called health care providers, insisting they are not mere service providers. But I think it is important for people (especially in the US) to keep in mind that we do indeed purchase care, and it is costly. To remove the monetary element, as if talking about money is somehow gouache when it’s about “saving lives”, this is just wrong. Patients and “providers” alike need to get over it. For me at least, the financial aspect of cancer is a big part of the ongoing stress of cancer.
And I reiterate, a pink light on a cancer treatment center just screams out to me this message: so many women, so much breast cancer, let’s lure them here, we need those customers, whoops, we mean patients. Always remember, we are both of those.
That’s the money side, the pink-for-profit side, of my entry into #WhyIsThisPink. But of course I have more.
What really bothers me about a pink-lit cancer center is that it reinforces how Pink has become such a Godzilla that all other cancer patients are feeling ignored and angrier with each passing year. I’ve noticed an increase this year (keep in mind this is just my perception here) of angry reactions when we criticize the perky Pink. Or even in pieces that do NOT criticize Pink, but rather embrace it. “What about X cancer?” inevitably pops up.
I can understand this anger to a point. As I stated in the above referenced blog post:
This is what Pink has come to; some perceive it as edging out absolutely every other disease and cause in an obnoxious way, and one’s perception is his or her reality. It is not exactly clear who these patients hold responsible for all this shoving down of the throat. The pieces I’ve seen and read do not seem to differentiate between products with ribbons on them (the kind that claim to send a few pennies to a charity or the ones that just have a pink ribbon with no such claim), pink parade-like races, or people wearing anything from tiny pink ribbon pins to head to toe pink-logoed ensembles. Perhaps it appears all the same to the very frustrated.
I can understand how ungrateful we must sound when we criticize all the Pink crap. But my understanding of this has developed a limit. (For starters, I again refer to Burden of Gratitude.) The other day I actually saw someone ask in a comments section “why does breast cancer get all the attention?” Really? The concept that there is no such thing as a dumb question is a lie–THAT is a dumb question. Breast cancer gets all the attention because sex sells, and well, boobies. Anyone who does not understand that clearly does not understand the concept of advertising and that is inexcusable in the 21st century. Grow up.
I’ve said before that awareness is a two way street. All the corporations and people drenched in Pink, making breast cancer sexy and cute in the name of “awareness” need to become AWARE of the unintended consequences, which is the impact on other cancers. That would be the resentment, the ill will that is now becoming apparent from advocates of other diseases. Yes, I realize not ALL advocates display this resentment, but it is there, and deserves acknowledgement. And it isn’t just the Pink pushers that should be mindful of what is going on. I have voiced before, and do so again, strenuously, that resorting to the comparison, the “what if everyone made X cancer sexy” is a tone deaf and insulting method. Some cancers/diseases are so ignored, that many would welcome ANY kind of attention. Just as it does for some members of the breast cancer community, the “any awareness is good awareness” point of view rules.
Now, of course, I think that viewpoint is wrong-headed. I am merely acknowledging how tone deaf that particular comparison comes off when breast cancer patients, with our “first ribbon problems”, drag out the “let’s make X cancer sexy” cliche. But here’s the thing: I’ve seen so much in the way of knee-jerk reactions this year–and very little listening, very little effort to understand the many well thought out arguments we make. It is very easy for advocates to snap, “X cancer should be so lucky, look at all the money/attention breast cancer gets”. It is time for all awareness, not just breast cancer awareness to grow up, to become savvy. The issues of unjust fund allocation to metastatic breast cancer has been explained time and again. The issue of how so many businesses slap a pink ribbon on something and donate very little or even nothing, has be explained repeatedly. The theory that all this rah rah visibility has “cured” breast cancer so that it is a “good” cancer has been debunked thoroughly. Yet, these issues must be re-explained each October. And it seems rather than actually reading/listening/comprehending, all I see is knee-jerk reactions “stop biting the hand that feeds and pay attention to X disease.”
Maybe we ALL need to stop and take a breath and have some kind of discussion in which a side is presented and another side is not allowed to respond for a few minutes. That old adage about listening to respond rather than to understand, or that idea that 51% of communication is listening (NOT talking), these things are true. The problems with Pink are being explained, thoroughly, carefully. But we don’t seem to be getting anywhere.
I guess this is why I have not been able to write a post in a few weeks. It is difficult enough to explain The Way Things Are In Pink CancerLand during the year; in Pinktober it seems impossible.
I return to my #WhyIsThisPink submission of a cancer treatment center bathed in pink light–an insult to the patients with other cancers who are also treated there. We’ve got to move forward and evolve in all disease discussions. That pink light on a cancer treatment facility is blinding everyone. Turn it off.