Even When You’re Not.

It’s National Cancer Survivor’s Day. I’m going with this picture to commemorate the day. It’s me, right after my last chemo in November 2014.

imageI think it says a lot. It says things I like to say and that people like to hear.

What it doesn’t say? Cancer: It’s terrifying, and expensive, and so lonely, no matter how much the people who love you try to love you during and after. And none of that has anything to do with how hard you “fight,” because that isn’t the way it works, and sometimes angry and depressed people make a full recovery and sometimes people full of peace and joy and light and positivity and do not. Because Cancer doesn’t care about your attitude. Or how much money you make. Or what kind of insurance you have. Or how you voted. Or if you’re a nice person, or an unkind person, or a religious person, or a person with a family. It doesn’t care because it’s not a person; it doesn’t strike because it isn’t a missile and it wasn’t aimed at anyone. All it does, really…is happen.

And I didn’t think so much about it before it happened to me, but now, just in the two and a half years that I’ve been in remission, it’s happened to so many people that I know and care about.

And I see them being strong and brave and wise and funny and–well, Ripley. They are all Ellen Ripley. Badass. The hero of the story. Not fearless, but enduring all kinds of things in spite of, and while continuing to experience, fear. Which is the actual brave part, because–and I am kind of only now figuring this out–you couldn’t be brave if you were never afraid in the first place. So rock on, you fantastic, bald, port-implanted, needle-bruised Ellen Ripley.

And I, well, I maintain that I’m Hudson. At least I have in the past. But you know what? No. As great as he is, I want to be Ripley, and we all get to be Ripley, all of us who have to go up against this thing that we REALLY DID NOT WANT TO GO UP AGAINST EVER. Ripley probably wants to fight an Alien Queen about as much as any of us want to sit in a chair and have poison pumped through our bodies. Some of us would RATHER fight an Alien Queen than have chemo, particularly Adriamycin.

So even though I kind of hate the “fight” and “battle” terminology around all of it, it’s not really going anywhere, because maybe that’s too much a part of who we are as a people. And if it has to be framed as a fight, I say every last person who ever has to do it gets to be the iconic, ass-kicking hero (if they want.) Even if you cry; even if you puke; even if you can’t even get out of bed sometimes, much less operate a Power Loader; even if sometimes you are too
much for the people taking care of you; even if you feel like it should somehow be transforming you as a person and it’s not, really; even if you find yourself still caring about things you never thought a person would still care about once this has happened but, surprise, you’re still you and you still do.

We’re all Ripley, which is definitely better than if we were all Spartacus.

So tell yourself you’re Ripley even if you’re sure you’re not and your achievement for the day was not puking up Saltines; tell your puny friend or loved one that they’re Ripley, even if you’re secretly just really over this and are approaching a point where you can’t anymore. (Because you’re a little bit Ripley, too.)

Unless you hate “Aliens” a lot and need me to stop because it has nothing to do with cancer and yet, here I am.

Happy National Cancer Survivors Day. You’re awesome and you’re doing great.

Even when you’re not.

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Gratitude, mostly.

This is a cancer post.

I was really, really grateful on Friday. Thankful, relieved, and lots of other happy and positive words. I did really enjoy the #D&DGOP thing, but for the most part I don’t have a lot of room for Schadenfreude, if that even counts, because for once more room is being take up by happiness, gratitude, thankfulness, etc.

I don’t have access to healthcare through my employer, so I have a plan I purchased from the marketplace. I know for a fact that I need a scan that will run thousands of dollars, at least once a year, for the forseeable future. Annually, I have a PET or CT scan done to check my body for cancer, in addition to blood work and labs every six months.  My deductible is currently $500, and my co-insurance after that is 20%, so that means that I’m not going to be completely on the hook for a procedure that is $5000 or more.

A lot of people don’t really understand healthcare.  At least one of my parents voted for Trump, which I do have feelings about as at least one of the things he had said often on the campaign trail was that he would make the repeal of the ACA a priority, so I felt like either this parent did not understand that health care is a priority for me, or thinks my cancer will never come back and nothing else will ever happen to me so it won’t be a problem, or maybe since Oregon is a pretty blue state, I’ll be okay regardless of what the rest of the country does. One of my parents said “Do you really think the state of Oregon is going to just let people die of cancer?” I mean…I don’t know? I know that lots of times people don’t go to the doctor to find out what’s wrong with them because it’s too expensive. I was one of those people. Both of my sisters have said things to me along the lines of “Oh, but most insurance just Is Bad and expensive, so I don’t really think it matters.”

I guess that’s a very Person Who Hasn’t Had Cancer thing to say? I used to say I was fairly sure most people didn’t understand health insurance unless they’d had a serious medical condition or been pregnant, which many people don’t consider to be a serious medical condition but certainly seems like it would be to me — but one of them has had two kids and the other is pregnant now, and neither of them knows what a deductible is so I think my initial assessment was just wrong.

If anyone’s curious, I will break some things down in numbers, “Erin Brockovich”-style.

3: The number of times I went to doctors at Kaiser who told me that probably, nothing was wrong, even though I showed up several months after my initial visit with a second lump right next to the first, on the left side of my neck.

4: The number of denials I got from various insurance companies when I tried to find affordable insurance in my gap months — insurance from my old job ended in August of 2013, and insurance at my new job wasn’t available until November. I had been treated for anxiety, which was a pre-existing condition, so they weren’t going to take me. I ended up getting useless gap coverage just so that my new insurance couldn’t refuse to cover pre-existing conditions as well. The lumps hadn’t been diagnosed, and they also hadn’t gone away. It was before “Pre-Existing Condition” part of the ACA kicked in.

19: The number of months in between when I felt the first lump and when I found myself on an operating table, counting backwards from 10 so that a surgeon could take one of the lumps out, send it to a lab, and tell me what it was.

13: The number of dollars I was making per hour. Sometimes, you simply can’t afford to have cancer. You can’t afford to go to the doctors, so that they can rule it out. So you just tell yourself you’re fine. That’s free.

3 again: The number of lumps that I had to feel on my neck before I finally decided that I had to find out what it was, even if it meant I had to be in debt for the ret of my life. The third one was on the right side and the other two were on the left. I’d been able to tell myself that maybe something was just wrong with some muscle or joint when it was on one side, but when it was on both sides I knew there was a problem. The ENT did, too. He knew as soon as he felt them. He told me not to leave without scheduling the biopsy. There was definitely a very cool surprise later on when I looked at the first PET scan of my body and saw the mass that had been growing right next to and above my heart for at least two years, maybe three.

4: The number of days I had to wait after the biopsy before finding out I had cancer.

3,000: My deductible, which was part of the reason I waited, part of the reason I put off even going to an ENT (Ear, Nose, and Throat specialist) as long as I could. A deductible is that amount that you have to pay before your insurance will begin to contribute. If you have 20% co-insurance after your deductible of $3000, that means you have to pay $3000 before they start to help you.

5000: My out-of-pocket max. After I hit $3000, my insurance paid 80%, and I was responsible for 20%, until I hit $5000, after which point, mercifully, I would have no more costs that year aside from copays. The timing of my diagnosis and treatment actually was pretty lucky, as my plan year had just started and I was able to get treated and cured within that year. You are absolutely going to hit your out-of-pocket max if you have cancer, no matter what it is.

3, one last time: How many paid sick days I had per year.

8: The number of Aetna representatives who told me that my wig would be covered even though in the end it was not, which I realize is not the worst thing that happened that year but my current job has confirmed for me that Aetna reps in particular do not always provide correct information.

100,000: How much it would have cost me without insurance. That’s more than my grad school tuition. And even though I wish I had better insurance, of course $5,000 is a lot better than $100,000. It was slightly more than $100,000, but I like tidy numbers, and inside that particular tidy number were three surgeries, two ultrasounds, an EKG, lots and lots of lab work, at least four PET scans, 8 rounds of chemo, and various other things I can’t remember or have blocked out. My favorite test was the one that checked to make sure my lungs were in good shape before chemo (bleomycin fucks them up) because when I looked over the bill I got from my insurance, it was listed as “Explanation of Wheezing,”
and I thought that was funny. There were not very many things related to treatment or insurance that I thought were funny.

If I have a point, it’s that cancer is expensive, and it’s hard, and it’s especially hard if you don’t make very much and you don’t have very good insurance, and a lot of people in America don’t make very much and they don’t have very good insurance, and a lot of them don’t get diagnosed with cancer until it’s too late. I became friends with one, via a mutual friend. (My poor best friend. Two friends with the same kind of cancer at the same time.) He was stage 4 before he even saw a doctor, because he didn’t have health care. He didn’t make it. He very likely could have if he’d been treated sooner, because Hodgkins’ has a 95% cure rate if you catch it in stage 1 or 2. His wife is now one of the youngest widows I’ve ever known. It shouldn’t be that way. He should be here. He should have been able to treat it.

I didn’t write the number of times I’ve been terrified that it would come back or that I’d have a worse kind than Hodgkin’s as a result of the chemo and radiation, because that has happened far, far more times than I could begin to imagine. Like daily. Sometimes several times a day. Currently, because it’s been a couple of years and because my next scan is still several months away, when the thought rears up I push it back down with a “Not right now. You can worry about that later.” I might as well kick that can down the road as much as I can. I have been doing better with each day and month and year that passes, gotten more efficient at telling those thoughts “Nope. Not today.” I try to Arya Stark the shit out of them.

My biggest fear, since the election, has been that the ACA would be repealed and replaced with nothing, that I’d have cancer a second time, that no insurance company would touch me, and that I’d have to ask other people for money or take on massive amounts of debt or…just not, I guess. And my parents would probably say “That’s ridiculous. We would never let that happen to you. No matter what.” I believe their intentions. But they aren’t made of money. It was $100,000 for an easily treatable type of cancer that went away quickly. I can’t even say what that might look like if it happened a second time.

I’m privileged to have that be my biggest fear. I’m white, straight, and cis-gendered. Increasingly afraid that “The Handmaid’s Tale” is about to be real life, but there are many, many things that I do not have to worry about happening to me personally. That’s privilege.

I’m not always very good at wrapping up, or at having a point. I’m really good at talking and talking and talking and spinning my wheels in the mud. I started this post out very positive and happy. Because even though I know those who oppose ACA will be back, probably empowered by the dark side of The Force, for now I feel much safer. For now, I can begin to imagine a 2018 in which I might have health care that I can afford.

I’ve been terrified since the election and now I’m less terrified about that particular thing for right now.

So, in other words–typical 2017.

 

 

 

The Best Time I Went to a Purity Seminar and Wished for Death

I was sixteen. I found the whole thing so embarrassing that I hoped I would just die. And then about seventeen years later I got cancer. GOD WAS LISTENING.

The thing is, I did say that I wanted to go to the purity seminar. I remember the day I saw a one-sheet about it in the church bulletin and shot my mouth off to my mother. And then about a month later, there I was, slouching and scowling my way into what counts as a mega-church in Visalia, wishing I hadn’t chosen a semi-goth look for the day because I could tell immediately that I was going to be regarded as a wayward youth. I didn’t think about this before. But I thought about it all during The Purity Seminar.

I know exactly why I said I wanted to go to the Purity Seminar. It was the same reason that I borrowed a friend’s copy of “I Kissed Dating Goodbye” later that year. There were no takers and I wanted to feel better about it.

I’m disappointed in my teenage self for not at least making a grand and dramatic statement and claiming that I’d become a nun, but we weren’t Catholic and in fact I had a book by Josh McDowell in one of my classes that talked about why Catholicism was a cult (spoiler: everything that isn’t Evangelical Christianity is definitely a cult) and this is sort of unfortunate because I think in some ways, Catholicism might have really worked for me as a moody adolescent. My parents were really hesitant about having me go see a therapist, reasoning that I could talk to our pastor or maybe even just to God, and if I’d had Mary as an option it might have turned out differently.

I always really liked the idea of being able to talk to Mary. Mary had periods. Mary seemed like she might Get It. Also Catholics were cool with drinking and I heard rumors that they learned science very differently than I did. The grass is always greener.

The Purity Seminar was very pink. Lots of pastel decorations. Run by well-meaning people. The only moment that sticks out clearly, all these years later, is the moment during the anonymous Q&A toward the end where one of the questions was “What if you feel like God has a Princess for you to meet instead of a Prince?”

The answer wasn’t so much about the sinfulness of being gay, but how that was probably not the case because if you just look at the human body, God obviously designed us to fit together in that particular heterosexual missionary way. Several people looked my way, even though I hadn’t even asked a question and it was supposed to be anonymous. The Semi-Goth look made a real splash.

I don’t look back and hate the people who ran the purity seminary. I grew up in that culture and I understand where they’re coming from even if I no longer agree with it at all, even a little bit. I was pretty mad at them for co-opting Shakespeare’s Ophelia as an example of why you shouldn’t Do It outside of marriage, because the theatre kid was ready to stand up and scream “She went crazy and drowned because Hamlet broke her heart and she had to SHOW HIM, not because he broke her hymen!” I didn’t stand up and scream that. The Semi-Goth look was saying enough.

I remember surveying the girls there and being sad that some of them were so young. They had enough time ahead of them to be told what to do and what not do with their bodies, and it was one of the first nice days we’d had all winter. They should have been out playing with their friends, not in some room where a lot of grown women were talking about flowers and petals because of course we couldn’t just come right out and say “vagina.”

I can’t pick a specific moment in time when I started to become a feminist – maybe when I read “The Awakening” in college, because I’m all about owning my Basic properties these days– but I think that day at the seminar day might have contributed a lot. I’d heard a lot of my friends talk about wanting their husbands to have had some experience on their wedding night so that “someone would know what was going on.” And I didn’t think that was exactly fair, for a few reasons – one, I thought the people saying things like that would hate whichever girl or girls their future husbands “practiced” with, even if they didn’t know them. The idea that other women could exist simply for “practice” with our theoretical future husbands was disturbing, all alone.

But there was also this idea that I began to have, which was that I didn’t think I would really care if the guy I ended up marrying had sex before he met me. Even then, I was more concerned about, was he the kind of person who would pressure a girl into having sex? Would he be the kind of person who would make a girl seem like a slut when he talked about it afterward? And if I didn’t care if the guy I ended up with had had sex before, it didn’t seem like it was fair for him to care about if I had. As long as everybody was safe. As long as everything was consensual.

I told my mom I’d go to the seminar, and I borrowed “I Kissed Dating Goodbye” because at the decrepit age of sixteen, I’d come to believe that I would never find a guy who—it wasn’t that he couldn’t be into sports, he just couldn’t care that I wasn’t into them. And he didn’t have to be into theatre, he just had to think it was cool for me to be into it. I would want for him to read books. I would want for him to be nice to me. I would want for him to not act like he was in charge just because of being a dude. I knew for a fact I wouldn’t say “obey” in my wedding vows because that just never made sense to me as a thing that adults do for one another. Dogs obey.

And then I grew up and moved to New York and became a liberal and lost every single one of my morals that I’d never held particularly close to begin with. That’s not actually true. But I did start to figure out what I actually valued and what I did not.

I was afraid of sex, because of an incident that had happened when I was a child. But I’d only ever thought that it was wrong outside of marriage in the way that I thought anything I wasn’t allowed to do was wrong – I knew it was supposed to be wrong, but didn’t quite understand the reasoning. It was like not being able to do “Halloween” or watch “The Simpsons.” Because I’m Christian. My reasoning went no deeper than that.

And even I don’t wish to go in-depth into my personal sexual history on a blog, but it didn’t take me very long to learn that “sleeping around” was applied to a whole lot of situations that were nowhere near as exciting as they were made out to be. A friend of mine mentioned that his sister would stay at her boyfriend’s house more often than not. Another friend made a comment about him being fine with his sister “sleeping around.”

Staying overnight at her boyfriend’s house when they were in a committed, monogamous relationship was “sleeping around?” K.

Earlier this evening I finished listening to the latest episode of the Savage Lovecast, which routinely features many examples of callers who are “sleeping around.” And a lot of that wouldn’t be a great way for me to be, because it wouldn’t make me happy, but it’s not important for other people’s sex and dating lives to make me happy. It’s actually not important at all. I wonder how the Savage Lovecast might have sounded to me when I was sixteen and in the Purity Seminar. Probably quite interesting.

I had a long way to go, in terms of overcoming prejudice and judgmental nature and understanding concepts like cis privilege and white privilege – I am sure I still do – but even then, I think I just had the sense what whatever anyone chose to do with that person’s own body should be entirely up to them, so long as they were not using it to hurt someone.

I am sure Purity Seminars still happen. I am sure those creepy Purity Balls do. I am sure the focus continues to be on “Don’t do it!” as opposed to “Basics in how to respect other people.” And I chose to leave the church so it’s not like I have any right to influence how they do things.

I wish I could time travel to the day of the Purity Seminar. I would tell myself “Don’t do a goth look today. Don’t wish for cancer. And when you have your realization about what you think would actually make you happy in a guy? You’re actually right. And you’ll meet him in about twelve years. You won’t get married right away. You might not get married at all. But you’ll be really happy with him. You’ll love him a lot and he’ll love you a lot. You’ll enjoy watching soccer together and you’ll also got to plays together. He’ll be so proud of you when you finish the play it takes you years to write. He’ll be next to you at your first chemo and he’ll be next to you at your six month scan and he’ll be just as overjoyed that it’s clean as you are. He’ll love you and try to make you feel beautiful even when you are bald.”

The TL;DR of that is “You will meet a guy who stays with you even when you have no hair.”

I mean, what else would a sixteen-year-old possibly want to hear?!