A Brief Manifesto Change

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!

When I was kid I ran into The Kmart's toy section to part with my hard earned allowance and cash on a new Star Wars toy. I still go straight to the Star Wars toy section 40 years later--nothing changes, ever! I just don't buy anything. But it's like I can't help myself, I have to go to see the Star Wars toys!
When I was kid I ran into The Kmart’s toy section to part with my hard earned allowance and cash on a new Star Wars toy. I still go straight to the Star Wars toy section 40 years later–nothing changes, ever! I just don’t buy anything. But it’s like I can’t help myself, I have to go to see the Star Wars toys!

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.

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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.

Cancer Clothes

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.

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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.