Livin' It Up With My O2 Wing...Droids?

Insofar as my life with cancer goes, the last month has been pretty unremarkable - which, I suppose, makes it remarkable! I'm still taking the TAS-102 (Lonsurf) regimen. I did have some neutropenia (low counts) after starting my latest round in January, but we also had a family vacation planned (a real vacation, where it was just us, a beach, and a whole lot of sunshine!) so that ended up working to my advantage - my oncologist wanted me to take a week off in between the two phases of my chemo intake, and so I was blessedly free of chemo while we hit the beach. Now I'm back and my counts are steady and I have resumed chemo. 

While my chemo plans have stayed mostly on track, I have been having problems with - surprise, surprise - my lungs. A string of colds, a visit from Influenza type-A, something that sounded suspiciously like croup...you name it, and one of the kids in our house has had it over the last two months (they've also had lice, but that's a completely separate story and all you need to know is that it was immediately identified and properly cleaned up and if my house goes up in a ball of flames in the next few months, just point the arson investigation towards me; I'll be at a hair salon that serves alcohol, having my head shaved). And when I say one of the kids, I'm talking about FIVE kids, from ages 8-13 (!), rather than just our two darlings,  because we had dear friends living in our basement for a while since their house was undergoing renovation. Germs are exponential, it turns out, and I am drawn like a helplessly curious moth to the cough and cold flame, because of course I am, and also because chemo not only kills cancer but also the white blood cells you need to fight off colds and flus. So I contracted ALL OF THE COLDS AND FLU and rattled around unable to breathe, coughing at all hours, and blowing my nose a lot for all of the holiday season. Which meant I was using my oxygen pretty much all the time. I'll give you just minute here to consider how much more difficult it is to breathe when you have weak lungs and a head cold, and also to ponder how someone with a terrible head cold manages to use a nasal cannula at all.                                              Let's just say there's been a lot of Kleenex used and cannulas replaced and leave it at that. 

I feel like I've talked about my lungs a lot on my blog, and maybe I have, but then again it barely scratches the surface when compared to the number of times I've talked about my lungs to myself in my own head, since lungs and breathing are pretty big deals when it comes to, you know, living.  I've used supplemental oxygen since way back in 2014, when I developed pneumonitis and experienced four broken ribs as side effects from targeted radiation surgical therapy. (I feel compelled to tell you that these are very rare side effects, especially both of them happening together to one otherwise well and youthful person - so please don't let my experiences scare you when it comes to using radiation or SBRT.  I truly am just the undisputed, even by my medical team, Queen of unexpected side effects. I can only say in my defense that I am an educator down all the way to my bones, apparently, and can't help but throw some complications at these experts - just to keep them humble, both in terms of confidence and expertise.) 

Ever since my lungs claimed their spot as the diva organs, I've struggled to keep my O2 saturation levels above 90%, which is the bare minimum for not using oxygen. Living at elevation has only complicated matters, and so over the years we've embraced all of my various oxygen pets: Big, the standard oxygen concentrator; O2D2, the backpack sized portable; and baby Double-O, the 2-3 hour portable who likes to take car trips and visit the yoga studio. Just picture her with fuzzy ears, sitting on my lap and sticking her head out the side window of the car so the ears can flap in the breeze. Over time, these three have become more intertwined into my daily life than less, and with these latest lung problems, I've pretty much come to the conclusion that supplemental oxygen will now be a permanent part of my daily wardrobe. So chic, to wear a clear mustache that sticks up your nose. On the flip side, I DO have my very own portable oxygen bar, and those are trendy again, right? Maybe watch for nasal cannula at the next round of fashion shows. I'll be here waiting to say I told you so. 

All jokes aside, recognizing that my O2 concentrators and I will be spending more time together - it's really been a little difficult for me to reconcile myself to this reality. People stare at cannulas, which I generally ignore (except for kids, with whom I engage when appropriate because what child wouldn't want to know why someone is walking around with something up their nose? Noses are, perhaps, the final frontier of kid-dom! Everyone sticks stuff up them - they're RIGHT THERE, just waiting to be invaded. I stuck a pebble up mine at the tender age of three, on the advice of my wise older brother, who procured said pebble and then watched, enchanted and perhaps a bit more eagerly than absolutely necessary, as his suggestion that I do the deed became chaotic reality). More importantly, people get tangled up in cannulas and wind up stepping on them or dragging the cannula accidentally on the ground when people get frustrated by the tubes pining them to, say, a movie seat or a barstool  or a grocery shelf that has a weird lip on it that really shouldn't be there for Heaven's sake and decide that yanking on the cord certainly will solve the problem. (Those people are wrong, of course, but don't try to tell them that, especially while they're wresting with their cannulas. They'll find out soon enough. Just have a hanky ready and maybe an alcohol wipe for cleaning the cannula. Oh, and as long as I'm throwing things out there, an iced soy latte from Starbucks is also delicious and soothing.)  

It makes me feel like an old lady, and it makes me not want to go outside, because the other thing about supplemental oxygen concentrators is that they run on batteries and if you run out of battery while being out and about, well, you'd better have a backup battery ready. This requires planning, and I don't like planning before going somewhere. I was never the mom with the extra pacifier, twenty snacks, a first aid kit, different sized diapers "just in case" and a raincoat in her bag. No. I made friends with those people and then just raided their bags. Who am I kidding? I still do this. You want to be friends with me now in real life, don't you? Aren't I just a charmer with so much to offer? 

But I digress. Visible signs of illness generally have enhanced my feelings of being ill. It's easy to walk around and pretend you're normal when you look normal. You can kind of believe the hype. But throw a cannula on or plunk into a wheelchair and you're suddenly in a weird space. People don't want to be rude, but they can't help but notice. So you're weirdly invisible all of a sudden - people talk past you or don't talk to you at all - or, as those in wheelchairs have pointed out in poignant detail - they talk to whoever is accompanying you rather than you.  But I've decided to say "fuck it" to the idea that I look like a patient now that oxygen is my co-pilot.  My oxygen makes it possible for me to BE normal. To take a yoga class and walk to the library and make dinner (away from flames, of course - oxygen is demanding like that) and go to the theater.  Over the years, I have noticed that if I don't make my oxygen a point of focus around people who already know me, they stop noticing it (or at least I stop noticing that they're noticing, which is enough for me).  When I meet new people, I try to set them at ease by acknowledging yes, I have a tube stuck to my face due to some lung issues, and then I just have to let it go. What else can I do about it? I've been a patient long enough to know that my particular "problem" isn't really a problem at all. I can't go out much when it's really cold, sure (the cannula will stiffen up and breathing is much harder), but why would I want to do that anyway? (Skiing. The answer is skiing. But then again, I live in Colorado, so I can be picky about when I ski.) I have the option of using small and relatively light oxygen concentrators rather than big bulky pure oxygen canisters (the green ones that make you look like a balloon salesperson - you know the ones) when I'm outside. Lots of people using oxygen aren't so fortunate, due to a variety of factors. And many of my fellow advanced cancer peeps* face far more taxing and restrictive daily crap to deal with than I do. I know how good I've got it, is what I'm trying to say. Damn cancer, giving me insight and (dare I even suggest it?), possibly, a tiny bit of wisdom.  

So, to sum up, my chemo is rolling along, I have resigned myself somewhat successfully to having a rope stuck to my face most of the time, I'll keep making plans to travel to sea level, where I get to walk around supplemental oxygen free unless I can't because lungs are divas, so please invite me to visit if you live at sea level; try not to stare at people with medical devices but if you can't really help yourself, knock yourself out but maybe say hello and look them in the eye, too, because we are regular people after all; and did you pick up on the fact that I've been practicing yoga? It's true! (Also, I've been practicing yoga, so if you wind up in a class with me, I apologize for my supplemental oxygen, which, in a quiet room, sounds remarkably like Darth Vader but I can't cover it up to muffle the noise because it only works when it can intake air. Sorry about that but not so sorry that it's going to keep me out of the studio, just deal and try not to be jealous that you don't own a Double-O of your very own. Seriously, though, sorry about the noise.) 

Happy January and I promise I'll update you more frequently this year. Holidays and illness and a tropical vacation (I just have to keep mentioning that, don't I?) all conspired to keep me away but I'm back, baby! I'm back! 

* There's just not a good word for long-term patients - we're survivors, all right, but we're also in treatment. Call yourself a survivor and you run the risk of people congratulating you on being finished with chemo or, good God, even worse, on being healthy again - a natural and kind impulse but it leads to a very awkward place, where you just say "thanks" and hope you never see them again or you have to explain that congratulations are not in order and that just sucks all the air out of the room (see below where I talk about the ramifications of identifying as a "patient".)  

Now, say you're a cancer "warrior" and oh boy, I just cannot countenance that whole concept of being a warrior or a soldier or whatever (I'm no soldier, trust me - not only am I not exactly physically fit right now but I, um, chafe under supervision) or even the entire idea of kicking cancer's ass, because you're also kicking your own ass and...this just deserves a post of its own or, more likely, a chapter in my being written at this very moment (well, not THIS this moment but you know what I mean) memoir, so I'm just gonna save it and return to my original musing, which is about what to call us long-term patients. 

Some people call us "thrivers" but that's a little too cheery for me. I refuse to be a cheerleader for cancer, of all things. No. Fuck you, cancer.  I tried my hand at pom squad in high school and failed miserably which, looking back, was a very good thing, because even when it's not cancer, I do not have the temperament to stand around cheering or the wherewithal and inner resources for looking enthusiastic on demand (which my fellow lacrosse parents may have already noticed - ah, I'm having an epiphany! - no wonder they're not letting me in on all the parent gossip and fun! Damn it. I really need to figure this out. Or if you're one of those lax parents, just take pity on me so I don't have to put myself out there and feign knowledge or enthusiasm about the games and practices and camps and clinics and water bottles and gear bags and social outings and so on, K, thanks!) and never did.  

Just saying "patient" leads people to ask when I'll be finished with treatment and saying "well, um, probably when I'm dead unless a scientific (or regular! I'm not picky!) miracle of sorts occurs" just doesn't make one sound very friendly, even if you say it cheerfully - I've tried! - and if the person is learning you are a long-term cancer patient, s/he tends to size you up and then stand there wondering when you're going to wind up Ophelia in the river if-you-know-what-I-mean, and that's just not comfortable or okay at all, even though s/he can't really help his/herself. 

So. We're left with what? Patient-survivors? Too clunky and thus an automatic NO. I like words too much to adopt anything like that. OH! How about P. Vivors?! Yes! I sound like a celebrity! It's very 21st century! It rolls off the tongue. It's perky, but with an edge. It's a feisty; it's a little bit in-your-face. In short, it's perfect. 

Where do I take this if I want to take it to the top? How do we roll this out? P. Vivers (I know that it should be spelled with the "o" but the second "e" just gives it that little extra kick, don't you think?) in the houuuuuuuuuuuse! Help me OUT! We gotta new name for us! Stop the presses! Launch a twitter-storm! Hashtag it! Start an FB group! Instagram it! Whatever it takes. WHATEVER IT TAKES (Oh! Maybe Dan Reynolds would be willing to hitch his Imagine Dragons superstar status to our P.Viver star? Or vice-versa, which makes much more sense? Do you know Dan? Or someone who knows someone who knows him? Branding was so much easier when it was just a bunch of people sitting around smoking in an ad agency and there were only three tv channels and a couple of national print outlets that mattered. Now everyone and their mum can be out here, on the inter webs an the tweeter box and the text messaging apparatuses and so on, hawking their wares and words...blogging, even...

I should go. Muah.