Monthly Archives: September 2013

A political one.

I do this thing every week, as my date with chemo inches closer, in which I start to dread and bargain. I haven’t had enough “good” days, there are too many other ways I want to spend my time, I hate how the steroids make me angry and weepy, I’m tired of the nurses poking and prodding at me, I don’t want to know how the cumulative effects of the chemo are going to make me feel, I want to just skip a week and take a break, or just be done. And then I check myself. Quickly, in case The Universe is listening. And I make sure and sit for a moment in gratitude. Because I’m one of the lucky ones. I’m the one who has the privilege of whining about the side effects that she is experiencing due to her life-saving medications. And the one who is lucky enough to be burdened by all of the medications I take to counter the side effects. I am the one who looks at the Explanation of Benefits (EOB) that my insurance company sends me weekly and experiences curiosity rather than panic. Hell, I get EOBs. I have some bills, sure, because of my deductible, but even that was pretty low, relatively speaking. So I don’t have to make decisions about which treatment, if any, I can accept. Or which bill to pay and which bill not to pay in order to make this work. I don’t have to accept treatment, knowing I will never be able to pay the exhorbitant amount that is charged for it, and make my peace with bankrupcy. I don’t even have to accept a provider that I haven’t thoroughly researched and decided was right for me, because my plan will only allow me a few choices. I really have the best of all worlds.

But I’m constantly aware of how tenuous this luck is. I do this math in my head, this constant recalculation: “If I had to stop treatment now, would I be ok? 6.5 weeks until surgery…. if I keep my benefits through that, I have a better chance of a cure. If I can just keep them through radiation, my rate gets even better. If I can sustain them through the suggested hormone therapy for five years, that’s the best.” And it’s not like I’m in imminent danger of losing my benefits, but, you know, things happen. Every day. Every day, people lose their benefits due to job loss, divorce, death of a spouse, reduction in hours, etc. And I’m acutely aware that although I’m one of the lucky ones now, my luck could run out. I could become these people, who are losing their house because of the cost of treatment over the years. I could become one of the millions of uninsured. I am under no delusions that I have good insurance because I’m more deserving, or work harder or more than others. I just happen to be a part of a family that also includes a family member who is employed by a company that values the health of their employees. And so, because I’m lucky, I have access to healthcare that others don’t. And that makes me angry.

Why, in this wealthy nation, is there such disparity in something so basic as health care? Why should I have a realistic hope at having my cancer cured, but someone down the street with just a little different luck (ok, a lot different luck) should not? More to the point, why are some of our elected officials, who enjoy premium health benefits at our expense, working so damn hard to make sure the disparity continues? 42 times. 42 attempts at repealing Obamacare. 42 times they could have been improving Obamacare, or our education system, or our military, or our gun laws, or poverty, or, or, or, or. Instead, the party of the self-proclaimed fiscal conservative decided to spend an ungodly amount of money on 42 attempts that their own members say won’t be successful. So what’s the big problem? It doesn’t do enough? Agreed. It was the compromise. Too expensive? Well, A) if you’re so concerned about money (you being the elected officials I’m railing against here), stop wasting money by trying to repeal Obamacare just to prove you can stomp your proverbial foot louder than the person across the aisle, and B) do you think our current system is free? Who do you think pays the bills of the people who get emergency care, but can’t afford it? The people who could’ve maybe avoided the costly care they’re currently getting with a little preventative care? Who do you think is paying for that? We are. Think people should earn what they get? That’s a lot easier to do if you’re healthy, and it’s a lot easier to be healthy if you have access to healthcare. Makes government too intrusive in our lives? Because that value doesn’t seem to be a priority when the subject is women’s health or marriage equality. Think our healthcare system needs an overhaul? Me too. But in the meantime, people are getting sick, and being denied care due to pre-existing conditions. I very nearly was. Had I gone to the doctor to check out my lump two days earlier, when I was in between insurance companies (because what could go wrong? I’ll just chance it for a few months, since I can’t afford COBRA…), I would have had a pre-existing condition once my coverage started, and been vulnerable to my care being denied. With no means of paying the considerable sum it costs to access healthcare in the US. So back to Why Not Obamacare (and yes, I’m using their term on purpose)… is it just because this is a continuation of Mitch McConnell’s proclamation in 2010 that the GOP’s biggest priority should be to ensure Obama was a one-term president, setting forth an agenda of obstruction? Is it just because this is Obama’s thing, and if it works, then history might smile upon him? Because that’s not good enough. We deserve more. We pay our elected officials for more. And if they can’t do better, if they can’t improve upon an idea, we at least deserve debate. Good, honest, well-intentioned debate that isn’t funded by the Koch brothers and isn’t filled with misinformation intended to scare us rather than inform us.

So I’m aware this is a scattered post filled with more emotion than with articulate, fully-reasoned arguments, but that’s kinda how I am right now. I could, and probably should, flesh out all of these arguments and provide links to cite my sources. But I’m going to cheat instead. Because I’m tired (playing the cancer card, yes), and because so many others have said it so much better than I can. Most recently (but certainly not confined to her), Krystal Ball sent out a plea to the moderate conservatives, the ones who aren’t falling for the deceit and the greed, to stand up to their elected officials. If you haven’t seen it, click here, it’s worth a watch. Others have debunked the various lies that have been spread as scare tactics, and others have just tried to appeal to our better natures. All of them are readily available everywhere you look (ok, probably not so much on Fox), and all of them are more articulate than myself. Which perhaps makes this post a waste of cyberspace, if I’m not saying anything new. Because I’m not. But I am saying that I am so grateful to have the luxury of dreading my healthcare, and am incensed that to others, my bald head represents an unattainable wish rather than just a side effect.

Confessions of my ridiculousness

I’m sure we all have our own ways in which we are ridiculous. Maybe not — maybe it’s just me. In any case, there are a few ways in which my own ridiculousness keeps popping up lately, over and over, mostly in the form of problems that have solutions for normal people, but not solutions I am likely to utilize. (If you look at it this way, some might see fit to substitute ‘ridiculousness’ for ‘laziness’ here.) Since I have some extra time and nothing else to write about, I thought I’d share them. I’m considering it somewhat of a public service, because this should make you all feel a little better about yourselves, a little more well-adjusted in comparison.

I often get the comment that I’m brave for showing my bald head publicly. My reaction to this is generally surprise or confusion. Does said person not really know me? Is s/he under some misguided belief that I have the patience or interest in keeping up my appearance? (and if so, does s/he pity me that this is the best I can come up with??) The truth is, I don’t bare my bald head because I’m brave. It’s not like I’m scared to go bald, but do it anyway to make a statement for cancer patients everywhere. A more accurate description would be that I am some combination of lazy and comfort-driven. I mean, come on! It’s summer! I’m hot all the time. And I hate feeling hot; I am from Seattle, where mild temperatures reign. So there is very little chance I am going to add to that misery by donning a wig. Maybe a hat. Every once in a while a scarf if I’m feeling fancy or motivated, but I don’t really have the skill or the patience to pull that off like a normal person would. Also, I often forget to look in the mirror, so I’m usually blithely unaware of how I might look to others. Don’t get me wrong, I’m terribly flattered that anyone might find me brave. I’m just saying, that’s not what’s motivating me. Comfort motivates me. Laziness guides me. The one exception? Miko’s first day of school. Apparently that’s where I draw the line of apathy for my appearance. I made a special shopping trip (a rare and dreaded activity in my world) to buy a new hat to wear at drop-offs and pick-ups. By the second day I dropped her off while bald. Hats make me sweaty. Also, I forgot to look in the mirror.

Instead of sticking a needle in my arm every time I need to have blood drawn or get chemo, the nurses access my port. This is a nifty little device that sits just under my skin below my clavicle on my right side, and is used for infusions. It used to look like a round bump, but now that the swelling has gone down, you can actually see the edges and prongs of the port, and it’s pretty disturbing. It’s clearly not supposed to be there, and the more I look at it, the more anxious I get about it (which, in turn, causes me to look at it more, like the car crash phenomenon). The more the port protrudes, the more certain I am that if I lie on my right side, it might just pop out of my skin. The nurses assure me (every week) that this can’t and won’t happen, but just looking at how pronounced it’s become, I’m not always certain I believe them. So what do I do to ease my anxiety? Sleep on my back? Or my left side? No. I continue to sleep on my right side, because it’s more comfortable, and somehow, changing my sleep position feels like too much work. The bonus to this is that every morning I get to wake up and feel pleasantly surprised that my port did not, in fact, pop out of my skin.

My double mastectomy is coming up (in two months). I’m increasingly focused on how I’ll look afterward. I’m self-aware enough to know I won’t do anything about it, so it’s not like I’m planning accomodations or anything. I’m just recognizing that in two months, my already-present body issues will become more pronounced. Essentially, I spend my time actually planning to feel self-conscious, rather than planning ways to make myself feel better. Ridiculous. See, I don’t have a boyish figure. So, this no-breast look is going to look absurd. It just is. Combined with my bald head, and the fact that I gain weight predominately in my stomach, I’m certain I will look like a pot-bellied, middle-aged man come November 11th. I tell this to friends, who laugh nervously (while conspicuously not making eye contact) and tell me that I couldn’t possibly look like a pot-bellied, middle-aged man. But I’m skeptical of their honesty. I’m reminded of a close friend who told me that once I lose my eyebrows, I should draw them back on in outlandish and/or pronounced ways, and see which friends allow me to leave the house that way. Are the same friends who say I won’t look like a pot-bellied, middle-aged man the very ones who would allow me to be seen in public with drawn-on super surprised eyebrows? If I were brave, I’d do an experiment. But I’m not. And just so we’re clear, yes, I’m aware there are several “fixes” to this man-looking problem (wig, prosthetic breasts, new clothes, etc.) But let me just refer you back to my apparently stable personality traits of laziness and apathy, and remind you that those fixes are highly unlikely to ever occur for this girl. That just sounds like too much trouble.

A part of me (okay, most of me) is mad I haven’t gotten cancer-skinny, like you see in the movies. I’m aware of how insensitive this sounds, especially for those who have struggled to keep weight on while their disease ate away at their bodies. But I was just kind of hoping, you know, a silver lining might be that I finally lose some of this weight that I have sort of tried to lose every once in a while, on and off, when I didn’t feel like a snack. Instead, I’ve gained weight. Every week when I see my doctor and complain about it, she is a little less patient with my concern, and reminds me that she is doing every thing she can to ensure that I actually don’t lose weight while I’m on chemo. I thought she could throw a sister a bone or something, but apparently not. So my clothes don’t fit, but I refuse to buy new ones, since my shape is about to drastically change, anyway. The other reason I can’t lose weight (aside from my affinity for ice cream)? If I want the option of reconstruction without implants, I have to maintain a certain level of belly fat. The surgeon will “harvest” the fat from my abdomen to construct my new breasts. (I’m not going to lie, I’m sort of in love with this fact.) Which, makes me sound like a farm or something, and brings to mind the saying “you reap what you sow.” I’m sowing plenty. Hopefully that works out, and I end this ordeal with a rockin’ new bod.

As I read this, I’m aware my mother will probably see it and worry that I need some affirmations, maybe a reframe or two to tell me I’m not ridiculous, but just right. Don’t worry, Mom; I’m ok. Although, a little Mama-love is always welcome.