Is Cancer Curmudgeon A Secret Optimist?

The funny thing is, as I sit down to begin this post, I’m feeling pretty low and pessimistic. It is possible I write this to remind myself why I do…anything at all in advocacy/activism areas.

This notion began a few months ago as I listened to my daily diet of political podcasts. This one pod featured some female activists; I cannot remember what they worked on—Women’s March? Some random state election? My brain just cannot remember. The interviewer asked how these women kept up the energy and motivation to keep on keepin’ on. One of the interviewees stated that activists/advocates are optimists by default—how else would they have the wherewithal to continue “The Fight”. (Not the actual quote, just the gist.)

This struck a nerve for me. As I’ve spent the past 18+ months doing stuff with my local Indivisible, I’ve often thought all the marching and whatnot is just useless. The political, no, wait…the cultural climate in America is too awful now. My natural darkness leads me to think we are on the brink of another civil war. I hope not, but I wouldn’t be surprised. Shortly after the election, I joined a few groups trying to bridge divides, but I gave up on them. My lack of patience and lack of spoons (see note at bottom on “spoons”) means I refuse to allocate my time on something I think will not work. So how is that I continue to get up, keep up, keep going to meetings, keep thinking about the issues?

Could I be—GASP—an optimist? Clutch the pearls! I mean, how much electronic ink have I spilled on this blog moaning about how I just hate all this “think positive” crap? I mean, look at what I call myself for heaven’s sake! It is NOT an accident—I really am a Curmudgeon, and not just about cancer.

But-in-retrospect-being

But wait, hold up. I’ve also said that yes, I am a cynic—and cynics are just (bitterly) disappointed romantics.

I’ve found an uncomfortable amount of parallels in the political activism world to CancerLand. The drive to “be positive”, to use “fun” activities to get attention, for starters, are the same. And like in breast cancer, my point of view is: nope, this is horrible and we should shout out our anger. I’m not good with the “attracting more flies with honey than vinegar” thing. (Attract even MORE flies with shit, just saying.)

But the thing that has been knocking me for a loop lately is that even though I think nearly all is lost, I still get up each day and “fight”. I tweet, I go to meetings, I stay informed, I trained to be an official voter registration person—though I’ve yet had the free time to do an event. I have a murky relationship with hope, so I have no idea how or why I keep on keepin’ on—because I’m not sure it is hope that I have, exactly.

It is the same with this whole cancer advocacy thing, I guess. I still write this blog, though it may be sporadically. I still “believe”. Well, believe is a strong word. Maybe, more like….I am still willing to bang my head with a 2×4, in the hopes cancer culture will change, than all the things I find abhorrent—the forced positivity, the warrior language, the celebrities, blah blah blah—will if not disappear, will cease being the dominant narrative.

I haven’t been good at activism or advocacy on any front lately. Too busy, too scattered after the dumb car accident, too jittery. Too tired—always. I go to my “safe place”, I watch cat videos—the REAL reason the Interwebz was invented. I slowly get better. I get back at it.

No, no one can mistake me for an optimist exactly. But something forces me to continue trying. Probably the same thing that made me a cynic.

Note: Spoonie theory.

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Ass U Me

The universe tried to remind me of something last week: people like to comment on a situation, with an air of expertise, and they know NOTHING about that which they speak. Dear Universe, please, a less drastic reminder.

I was in a severe auto accident a week ago. I follow a local newspaper on Facebook because it helpfully posts accidents that clog up traffic–so I can use alternate routes if possible. This time I was part of the clog–tho I was NOT the cause (more in a minute). I noticed 18 (!) comments on the post, and wondered what on earth people could have to say about the situation. Ha! Things like, “that intersection is awful”, general derision about the state’s inability to reduce the accidents, and my favorite: “stop tailgating”.

All the comments are true; the intersection known as 5 Points (because it is a 5 way intersection, not a normal 4 way intersection) is a mess and the site of numerous accidents, and not just in tourist season. And cars do tailgate and get stuck in the middle and cause gridlock. But none of these things applied in this particular accident on Wednesday afternoon. Here’s what REALLY happened:

I was heading south on Rt 1 around 12:50 PM to pick someone up from an appointment, and was not using my own car for once. Traffic light was green and there were no other cars along side of me–highly unusual in that dreaded intersection. As I rolled along I noticed a car coming at my left. It seemed to be speeding up, NOT slowing, as it should’ve been. I started to brake, looking to see if I could swerve to get away. I was angry and scared, what the hell was this car doing, coming at me like that?! Next thing I knew I was spinning, I was being shaken, loud crunch, loud pop of the airbag as it whooped me upside the head.

The 2 kind men who pulled me out of the car filled me in on what happened, on what I could not see. The driver of the other car was sitting in the middle of northbound traffic, impaired/asleep/something and people had been honking horns at him. He came to, and just slammed on his accelerator, right into me, and then into another car heading east, as he had been heading west.

I don’t know why he was unconscious in the middle of traffic, and it doesn’t matter, ultimately. Point is, it was the main contributing factor in the accident, and it could happen at any intersection. Just like other locals, I moan about 5 Points and the poor driving decisions made there by frustrated tourists wanting to rush their vacation, or other laborers like myself, just trying to not be late for work or appointments. Numerous accidents there compile a bundle of stats citizens use in their attempts to get the State Highway Administration to take some action. I joined that stat pile I guess, except the idiocy of the intersection’s design really, really, made no difference this time.

Yeah, that tire can’t be put back on–the rod is broken, the brake line, all of it, just, severed.

I wanted so bad to jump into the comment thread and ask these people why they assumed various factors (and what happens when we assume–hint, look at post title). The newspaper’s post was short on details–it merely stated it was a 3 car accident, traffic clogged–maybe use a different route if possible. It did mention that one person was taken away via ambulance, it did not specify which person. I could tell them it was the driver who caused the accident. I had no detectable injuries. I still do not know what is going on with him. The car I was driving is damaged beyond repair. The pics of the damage are scary enough to make me realize if impact had occurred a millisecond different, things might have been disastrous for me indeed.

I sit here a week later, reviewing, finally emerging from a state of shock or stun, wrapping my head around it. Yes, I did attempt to go to urgent care later that day, but I had no visible problems and the facility I went to would NOT treat any head injury (mainly my ear hurt from the air bag). Hell yeah I was super sore the next day, but that cleared up within days. I’m still shaken, but I cannot afford to be jittery about it. I avoided the intersection for a couple of days, but my job requires travel through that area multiple times a day, so I had to get over myself. I’m not saying I didn’t curl up in a ball of fear for a day–that did happen–but it’s fine now. But I couldn’t help thinking about this, ummmm, shall we call it Instant Expert Syndrome?

Haven’t we all been through this as cancer patients? Especially with all the awareness now–this awareness that doesn’t lead to education and understanding? Lung cancer patient? Yep, people ASSume a smoker, because they’ve been told for years about links between smoking and cancer. So they cannot imagine other scenarios, that non-smokers can get lung cancer too, for instance. Any gyno-type cancer? Yep, the ASSumption she didn’t get pap smears, never mind that particular screening method is NOT for ALL the cancers. And the biggest ASSumption, that is my personal bug-a-boo, the conflation of screening=prevention. That somehow, it is a patient’s fault they got cancer if they did not do regular screenings. Or didn’t get a genetic testing (see all the judgement flung at Jolie a few years ago–ugh, I cannot revisit it, too awful). A few facts have stuck in people’s heads and they are unable to imagine OTHER factors, that they often do NOT know the whole story. And slogans like “screening saves lives” confuse people to the point they think “screening prevents cancer”, and we know that is so not true.

Now, here’s the part when a reader would say–who cares what other people think? True, I kind of don’t care what others think–about the car accident. I know it wasn’t my fault, and telling people crazy accidents happen at ANY intersection, even the most well designed, won’t make any difference. Not my job to warn people about it–that is what driver’s ed is for.

But I am re-committed (again) to trying  to educate/advocate/make-people-understand various facts about cancer. I’m tired of dumb stigmas. I’m tired of awareness without understanding. Again, er, still. So, still, I will continue to make others understand the reality of cancer, not the slogan version, to which they bring those incorrect assumptions to fill in the blanks of stuff they don’t know. Because, clearly, that is what humans do: create a story based on a few details–and are so, so wrong.

Epilogue:

Other fall out from this damn accident is me having to grapple with something I have submerged all these years away from DX–this need for safety, security, routine, predictable days. I’ve never been particularly  adventurous or a risk-taker. But after treatment, I just wanted nothing big to happen to me ever again–even something good if there could be a “trade-off” of no bad big things happening to me (I know that isn’t how it works, I’ve written posts about that). I just wish…the Universe hadn’t clobbered me again last week.

The Cancer Curmudgeon Versus Snow: A Saga

Followers of my Facebook page will know I occasionally post harangues about an impending snow event. From 2 inches to 18 inches, doesn’t matter—I WILL complain. It wasn’t always like that. So what changed? Oh, in case you are wondering what this has to do with cancer, or my experience, bear with me, you’ll see.

Ocean City, Maryland, The Pier

Once upon a time, this beach bum liked snow. A true Atlantic/beach girl/Southerner, I knew that a couple of inches would close the schools—thank goodness. Northerners will never know the utter relief that comes with the gamble & pay off of NOT writing your big paper because of a snow forecast, and having that pay off of one extra day, that “Schools are Closed” day, to finish the paper. #ProcrastinatorsUnite. (Like you didn’t know I am a big procrastinator, please, look at this blog.)

A true book nerd/future English major, I also loved the romantic aspect of a snow day. The fact that I could stay inside, sip hot chocolate and read, watch old movies, whatever. That silly notion persisted through college days too. I even held onto the fantasy a little after joining the Real World. I embraced the idea if the world would just slow down for a moment, because of weather, I could catch up—read all those books I bought to “read later”, organize them, etc.

It’s not that I was completely unaware that people had jobs that meant they had to go out in the elements; I just thought I’d wind up being a writer, and I’d live snug in some apartment and could choose not to go out. Ah, being a slacker in the 90s while I was in my 20s was such a great innocent time.

But reality crashed and I had to drive in one too many bad situations only to have the store I worked in close after a few hours—a waste of a whole day. Maybe I was paid for the whole day, even the time I didn’t “work”, except the time I spent cleaning the car, driving, sliding uncontrolled into ditches, that time added up, and my resentment grew.

The pinnacle was the winter before my diagnosis. I worked at a non-profit and it had yet to enable us to work offsite. I drove several miles in a State of Emergency, passing a number of car accidents, to declare conditions too ridiculous to be open. And drove back home. And inevitably some fool complained a few days later—claiming their free off-of-work day (that they had because of bad driving conditions) meant I should’ve been working to take care of their stupid little problem, via phone, or they ignored the driving restrictions to annoy me in person. (Around this time I realized working in non-profit was just as disheartening as working in retail—because, assholes exist.)

I remember the times it snowed while I was having my chemo infusions. It’s not like I could stop those early; I needed the full dose, and then my ride had to deal with the shitty driving conditions. I don’t have digital copies of the pretty pics taken at the beach while I was in treatment—I remember taking the photos, trying to capture a moment even while too sick to be outside for very long. I’d like to share them here, but I’m not sure where they are. I might have trashed them—I went through a phase of destroying all physical memories of my time in treatment.

Now that I’m a pet/house sitter/self-employed/small business owner, I absolutely loathe the snow. Lost work days=lost revenue. Work days in snow are more physical labor, and labor is hard post-treatment, you know that. Work days in the snow means everything takes three times as long to accomplish. I’m already pressed for time to devote to reading/writing. This most recent storm, combined with my most recent killer cold, has been a huge imposition for me.

And of course, yes, I am mindful of the people who have to work in this mess. But more importantly, every time it snows like this, I see closures of local cancer treatment centers. I understand why—we are a beach area, there are few snow plows on the road, even now, several days later, some roads are truly impassable. Even today I skidded on a few side roads I use. So some cancer patients in rural areas simply are not going to make it to chemo, and some nurses cannot make in to work. To say nothing of dialysis patients, of patients with a million other concerns, who have to delay an appointment, to have to wait another horrible 24-48-72 hours for test results. Awful. I remember the snow while I was in treatment, I shudder, a particularly awful memory in an already awful set of memories.

But there is a deeper thing here to reveal about myself, this Curmudgeon. I am a cynic, I do not deny it. In fact I am slightly proud of it. But what is a cynic? Nothing but a (bitterly) disappointed romantic. I am sure I annoy many with my habit of always pointing out the bad stuff in a situation.

But that’s only because once upon a time I looked at the good in a situation first, and I’ve been disappointed bitterly too many times. If you really want to understand how the Cancer Curmudgeon comes to any cynical POV, look no further than this story.

You First

Once upon a time, or maybe 2 years ago, I got mad about something and wrote a post called Mean Streak. I felt kind of bad about it, hence the name and tone of the piece. I really wanted to call the post YOU FIRST. The current political climate in America has erased any guilt I feel about thinking YOU FIRST in response to the stupid argument: “we are all going to die someday”.

For those in the TL;DR class–what I was mad about 2 years ago was some damn social media comments on Angelina Jolie choosing preventative mastectomy due to her BRCA+ status. Some jerk went on a tangent about how we (Americans? society?) waste too much money on life-extending medical procedures, whether they be preventative exercises like Jolie’s, or those in the end stages of cancer, taking whatever medications they can, price be damned, to have a few extra weeks with their kids. He argued that we all die, and it was irresponsible (or something) to leave the family with a mound of medical debt. The “we’re all gonna die sometime” is a particularly callous point of logic when you are the one closer to death, believe me. Because, yeah, it is true, we indeed ARE all going to die at some point. Where things get tricky are the who and the when and the how.

For most of 2017 the repeal and replace debate has dragged on, zombie bills keep rising up. Those of us who’ve benefited from the Patient Protection and Affordable Care Act live on tenterhooks. In my activism role, I have been haunting the dark areas of the internet–political Twitter–and have often been enraged and sickened. Actually, I kind of stay that way. I remember being so upset when Kennedy was on Fox News and used the “we’re all going to die someday” argument, embellishing it with things like liberals don’t have a direct line to heaven, so there is no way any of us can know exactly when we will die. Her conclusion being that activists should settle down about whatever zombie repeal bill was in the news that day.

Note–most people know by now, but if not, yes, Kennedy was that annoying MTV VJ back in the 90s, hosted “Alternative Nation”. I did not like her back then, and I absolutely loathe her now.

Oh Kennedy, instead of being on MTV, you should’ve taken some classes in math or stats & probabilities or something. Granted, I avoided those classes too. But having cancer, I’m a little more aware of how it all works. For me, it is so, so simple. If I cannot afford health insurance, I will skip all my annual visits–oncologist, gynecologist, and even the GP. If cancer comes back, it will not be found. If it gets to the point I notice it, and it is found, I will not get treatment. See, that’s the advantage of having cancer a few years ago–I know how much every little thing costs. So I will die. Now, maybe I only have a 20-30% chance of recurrence, that isn’t too bad. Except guess what? I’ve been in those low probability categories before: my chance of getting cancer was not 1 in 8 (that’s lifetime risk), it was 1 in 233 (age 39); only 20% of us are HER2+, mammograms are only 80% effective–guess who got a false negative? So yeah, I’m not a fan of probability.

Sure there are many “ifs” in my line of thinking. So I can’t just jump to a slogan of “repealing ACA will kill me!” No, I don’t know this for sure. I just know the probability of repeal being a factor in my death is higher than that of Kennedy’s probability, or anyone else making that stupid “we’re all gonna die sometime” argument. See what I mean? Understand why I get angry about it?

Kennedy made this comment earlier this year, in the summer. I just shut it away because I was SO angry, and because, as my fellow resisters know, there are just too many things happening all the time now. I literally cannot pay attention to every little thing. But the memory of it came roaring back listening to Mike Pesca’s podcast “The Gist” last week. He was interviewing one of my favorite health policy reporters, Sarah Kliff, and they were discussing if slogans or arguments that cutting CSRs, Medicaid, and Medicare would really cause actual deaths. Kliff, being smart and journalist-like, cited studies proving yes indeed, a line, however long, can be drawn from lack of health insurance to death outcomes. Like my own example, there a number of “ifs” in that line. But, like I said, I had some improbable things happen to me, and it ended in cancer, and it sucked. I realize Pesca was just pointing out that hyperbole-style slogans are not exactly accurate, there is a great deal of explaining that has to go with it. He isn’t wrong; I’ve always had problems with breast cancer awareness slogans. Easy, tweetable things like “a mammogram saved my life” or “early detection saves lives” are debatable. Don’t get me started on the “feel your boobies” shit. But I see how they work. Easy, short messages succeed–along with cute merch, of course. So I engage in hyperbole–in spite of hating it–my own self now. Yeah, stopping CRSs, repeal without replace, that stuff will kill me (quite likely, see I have to include a disclaimer at least here, just can’t go full hyperbole).

So is it any wonder, now that I embrace overwrought slogans and bitchy quips, that when someone uses the pithy “we all gotta die sometime”, that I snap back with “yes we do, but you first!”? And, no, I don’t feel bad about it all. Two years ago, I did feel bad. I know it isn’t a nice sentiment. But the crass times we live in, with the lack of civility, have cured me of caring much if I sound downright mean. I remember crying on November 9, 2016. I was sobbing on the phone, explaining to my mother that I felt that this country was telling me it did not care if I died, because so many people voted in a Congress committed to repeal. She thought I was making a leap. But given the amount of “we all die sometime” sentiment I see expressed around the repeal debates, no I was not making a leap.

The healthy privileged in this country can glibly state the obvious, factual point that we all die at some point. But because of their health privilege, their employer-paid insurance plan, their likelihood of dying sooner rather than later is less than mine, less than that of my friends.

If it is so easy for these people to say “we all die sometime”, disregarding how it sounds to those who’ve gone into medical debt for every life-extending treatment they can, disregarding how it sounds to those of us about to lose health insurance, then I have no problem answering, “yes, but you first.”

I want to live. Don’t underestimate how much my will to live will make me fight you and your stupid, flip arguments.

Annual Summer Blog Challenge Accepted

I’m a little late to the party but still want to participate in Nancy’s Point’s Summer Blogging Challenge!

See my participation answers for 2015 and 2016:

OK, here we go, answers to Nancy’s questions:

  1. Share anything you want about your cancer diagnosis (or your loved one’s). Share your age, cancer type, stage, when you were diagnosed, family history (if any), your reaction, how you learned the news, or whatever you’re comfortable sharing. 

I went for my first ever mammogram in August of 2010. My maternal aunt had just been diagnosed with Stage 3 breast cancer. Her mother (my maternal grandmother) and aunt had had breast cancer as well. My grandmother was diagnosed with it as she was dying of heart disease, so was never treated for her cancer. Given that both my aunt and mother are on medications for blood pressure and heart issues, I always thought that was my bigger risk.

At any rate, that first mammogram received an “all clear” letter. A few weeks later I noticed my left nipple inverting. After a day of going to my new gynecologist (since the one who’d ordered the mammogram had suddenly left her position), and subjecting myself to numerous tests, well….turns out I wasn’t really “all clear”. On October 25, 2010 I learned via phone call I had breast cancer. An MRI ultimately proved it was about 5x6cm, biopsy proved it to be estrogen and progestogen negative, and HER2 positive.

I turned 39 years old on October 29, 2010. Starting in November had chemo, then surgery, then radiation (along with Herceptin infusions, simultaneously). I finished treatment in January 2010. I quit my 60+ hour a week main job to focus on my side hustle, and control my work load. I was exhausted

2.What is the most outrageous thing someone has said to you about your (or your loved one’s) cancer?

Someone told me just to “cut them off”. Ultimately I didn’t do that, I opted for lumpectomy. I’d often thought that about breast cancer patients before my own diagnosis. I found it harder to do when faced with the reality of it.

3.What is your biggest cancer pet peeve? I know it’s hard to choose, as there are many to pick from, right? But what irks you the most?

The sheer unwillingness of most people to understand and/or accept how complex cancer is. It’s not even the fact that people DON’T understand there are several types of breast cancer, not to mention the thousands of other kinds of cancers—it’s the fact they seem to glaze over or look at me like I’m lying when I try to explain E/P negative & HER2 positive. I remember being SHOCKED being in a room of about a dozen other women who had breast cancer, and when I introduced myself and stated my stage and kind of cancer, they had no idea what I was talking about! The nurse leading the seminar had to explain the different kinds of breast cancer. After that I pretty much gave up on local support groups—too uneducated and UNWILLING to learn.

4.What is something you want others to know specifically about breast cancer?

See above. And also, that it is a slog.  A marathon not a sprint. It takes a year or so for treatment and then more time to recover from treatment. It ain’t the damn flu.

5.If applicable, do you worry about recurrence rarely, from time to time or a lot? What is your biggest worry today, right now, this minute?

Always. I especially worry when I feel run down or “off”, like I have been lately. It gets hard to remind myself I’m probably just exhausted because of other stuff in life.

6.Do you feel cancer has made you a better person? Yes, I know this a loaded question. If you do, specifically in what way?

NOOOOOOO! It DID, however, release my inner Curmudgeon. Which is fine.

7.What is your favorite cancer book? (No, I’m not fishing for mentions of mine!)

The Emperor of All Maladies:  A Biography of Cancer, by Siddhartha Mukherjee. Haven’t read many others. I listen to books more than reading these days. #dogwalkerlife

8.Besides your family, where do you turn for emotional support?

Online support more than anything. After all this time blogging, I’ve found my “tribe” of like-minded cancer patients, former and otherwise. A relief.

9.How many cancer blogs do you read and why do you read them?

I don’t know—less than I would like, and less frequently these days. Because I’ve turned to political activism lately, I lack the spoons I’ve had to be as involved in online cancer communities. I hope to return soon.

10.Do you call yourself an advocate? If so, what drives you?

I have a fraught relationship with the idea of calling myself an advocate. I see the work of folks at METUP and how many political and other ties people like that have, and I’m just like, yeah, I can’t do that. I write my blog, I fuss and throw a fit, I muddle along. I accepted the mantle finally last year when I helped bring the #breastcancerrealitycheck tweet storm to fruition. Yes, we’ll do it again this year—working on it now. Also, participating in my local Indivisible showed me how much I learned as a cancer “advocate”, so I realized that yeah, I am an advocate. Ha ha, those cancer lessons—always the crazy stuff with me. Never touchy-feely crap like “life is short, love everyone”. For me always scratchy-bleedy. Just the way I like it.

What drives me? Oh, nothing short of a complete overhaul of the way society thinks about cancer. That’s all, nothing much.  HA!

OK, that is some stuff about me in a nutshell. Hope to back soon with more blogs describing the musings of this cranky-pants cancer patient.

 

The Thing About the Holidays

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.

Restraint

 

“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.

 

 

 

Unnecessarily Pink

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?

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I’ve ranted about this in What Do You Mean There Are OTHER Kinds of Cancer Besides Breast?!–three (3!) years ago (but this picture was taken only a few days ago). Here is what I said about it then:

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.

Frame of Reference—The Disease Olympics Part 1

I first remember hearing the phase “the Cancer/Disease Olympics” during that fracas involving Pancreatic Cancer Action’s “I wish I had breast cancer” PSA back in 2014. I wrote “Want Attention? Just Say Breast Cancer” in response; and included in that blog post is a link that will take you to the video, and more commentary (it reflects my own views; I urge you to research other views your own self). I remember that whole episode got really nasty; I even heard a few people sent death wishes/threats to the pancreatic patient who uttered the line. She did die not long after that, if I remember correctly. Just proves how quickly things get out of hand  especially when a subject raises passions.

And what subject is that? Disease/Cancer comparison and competition. I think the “official” definition of Disease Olympics is the competition for limited funding between advocates for diseases: to “win” increased funding for one disease means funding for another decreases. But I think in a more general way Disease Olympics can refer to the game of “who has it worse”, and research funding is just a piece, a large piece, of that picture. I’ve been sitting on a post about all this since early 2013. Two things happened back then: 1) A breast cancer patient I followed on one social media outlet wrote something so upsetting about being competitive with her cancer that I took a hard look at myself and have been doing so ever since, and 2) Journeying Beyond Breast Cancer wrote a wonderful piece asking Is There a Hierarchy Among Cancer Survivors  (read it now, especially the comments, which are the crux of the discussion!). I kept writing about these incidents off and on, and it has now grown to three parts—this is the first part. I’ve been sitting on the post not only because it grew so unwieldy, but also because it is an ugly subject and I have some ugly confessions to make. I want to be completely honest, and as awful as this topic is, avoiding it won’t make it better—not saying conversation about it will either, but, I’m trying anyway.

The more I wrote about it, the more I realized that the comparisons are present even when those doing the comparing don’t think they are doing it, or rather they don’t know or understanding exactly the things they are comparing. For me the worst compare/compete stories are within the breast cancer community. That’s the third part. Slightly less awful are the comparisons/competitions between cancers—as the Pancreatic Cancer Action story shows—and between cancer and other diseases. That’s part two, and it will not be easy to write or read either. But before I started going into all those areas I had to write about a realization I had while considering comparison from as many angles as I could.

I cannot condone the competitive aspect at all. But when it comes to comparison, I do pause. Comparison can be useful, if careful. The most obvious example, at least in my experience, is the fact I tended to seek out other cancer patients with the most similarities—as in those HER2+, since I seemed to be an oddball in an estrogen-based cancer world there for a while. That was the biggest issue for me. Other aspects, like finding others at Stage 3, others who had a lumpectomy, not a single or double mastectomy, others who did not reconstruct, others NOT BRCA positive, and of course, others in my age range—all those things I sought out as well. All those aspects have become less and less important as I’ve progressed away from my diagnosis date. Views and attitudes about positivity and the bullshit around cancer have become waaaaay more important to me. It was just in that first rush of dealing with treatment, of trying to grasp what the hell was going on, that I desired to find people with the most similarities. I still have a habit even now of paying more attention to such silly aspects; it is not that I do not care about, say, Triple Negative cancer, it is more like—cancer is so damn complex, it’s hard to wrap my head around it all sometimes. The bottom line however, is to not let those details cloud the bigger picture, the commonality we share.

That may sound a little hippy-dippy, airy-fairy coming from a Curmudgeon, but it is true!

I will go so far as to say my cancer experience has helped me in my current line of work. As I’ve mentioned here on this blog and other places, I am a pet sitter, but that job turned into caring for a primary client with Chronic Lyme. So I’ve wandered into so home health care tasks in my job. Things like hooking up IVs, administering medicines, keeping a strict schedule (know that old nugget about nurses waking you up in the hospital to give you meds? well, I understand the need to adhere to a schedule no matter what now), paying close attention to dietary restrictions—heck, even cooking—I do all these things now. And yes, they are easier to do BECAUSE I went through the cancer experience. In short, I now appreciate the damn infusion machines that I hated so during chemo. Having to set the drip rate on an IV manually, using my eyes and the metronome app, well, it got tricky for an impatient brat like me. Argh, medicines requiring a slow drip rate are THE WORST!

It wasn’t that I relied on my cancer experience to say, “Oh, I’ve experienced that, no big deal!” That would be awfully dismissive. No, it was more like, “Yeah, that happened to me, it sucked, now how can I apply my gained knowledge here?” Having the frame of reference of major illness and the operations of medical industries has helped: I was surprised and pleased to find the infectious disease center provided materials similar to what I was given at the start of chemo. Was I troubled by just being in a medical facility, by having these upsetting memories? Sure, but at the same time, I was entering into the role of caretaker in another frightening illness situation. Having that frame of reference, experiences to extrapolate from, it was only helpful. Being able to say, “oh yeah this is like that was for me,” made me more efficient, and not too rattled.

It is so NOT about one upmanship.

So is there an undercurrent of one upmanship, or maybe one downmanship (since it’s not about who is better, but who has it worse, right?) in diseases and patients? If so, can it be resolved? No, but I still think it should be discussed.

Has using comparisons ever been helpful for you, to help you understand parts of your illness?

Word

Since I’ve often spoken of my love of certain kinds of music, including hip hop, it would be understandable if you saw the title of this post and thought I meant it in some lame kind of “word to you mother” way (see post about Vanilla Ice).

But no, I do not. Continue reading “Word”