Cancer Needs An Ass-Kicking

February 15, 2014 at 5:59 pm (Personal Real Life) (, , , , )

Let’s talk about cancer, and about moms, and about moms who have cancer. Specifically, let’s talk about my mom.

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Last April, my mom started having some abdominal pains and bleeding, which might have been easy to explain if she hadn’t stopped that process a few years ago. (Ladies, if you notice anything weird going on with your lady-parts or lady-cycles, see a doctor. Better a false alarm than missing something. Actually, that goes for guys, too. True self-love is checking to make sure all your junk is healthy) A scan showed some shadows on an ovary and a mass behind the uterus. The cancer markers on her blood test were low, so there was a possibility that it was benign. If it was cancerous, they were pretty sure it was ovarian, slight chance it was uterine, and they were pretty sure they’d caught it early.

But, when they went in to remove the questionable bits, they found a very, very different story. They found cancer tissue across her ovaries and uterus, across her bowel, and through her lower abdominal cavity, including wrapping around a few blood vessels. They got out what they could, which necessitated losing some bowel, and sent it on to pathology. My mom’s surgery was near the end of the May; I spent the School Library Journal Day of Dialogue and most of my day at BEA waiting very impatiently for the path report. Not that I was going to be able to do anything from New York (or do anything, really), but not knowing was awful, because this was so clearly not what they were expecting. We’d been expecting the report for days, and every day that passed without a response just made it worse, because it had to mean that it was more complicated.

And it was. What they found was advanced cancer (Stage 4) originating in the appendix. Appendiceal cancer is rare; there have been less than two hundred documented cases since it was first diagnosed as a separate and distinct cancer in 1969. Because of its rarity, treatment options are…limited. Limited and still largely experimental, lobbing chemo agents at it and hoping it works. Chemo couldn’t start until she was fully recovered from surgery, which took a while, because it turns out when you lose portions of your bowel, it makes little things like eating a very chancy business.

My mom was, at this time, enrolled in an online graduate program to become a Nurse Practitioner. Grad school has been a dream near and dear to Mom’s heart for a long time. She was enrolled at UF when we first moved to Gainesville in 1990, but she got recalled to active duty during Desert Storm, and was gone for almost a year, and then becoming a single parent meant that grad school had to wait. And wait. And wait. When she finally got the chance to investigate online programs, we crossed our fingers. When she actually got to enroll, we were ecstatic. The program is hard. It’s meant to be done by professionals working full-time, but you would never know that based on the deluge of assignments and impossible class times. She worked herself to the bone while she was still working. Fortunately, she was eventually approved for a grant that allowed her to leave work and do school full-time. It meant things were tight, but it also meant school was doing well.

UNfortunately, once she started chemo, school got harder and harder to keep up. Chemotherapy essentially poisons your body; it’s why the side-effects are so terrible. You’re literally pumping toxic chemicals into your body in the hopes that it kills the cancer before it kills you. She grew extremely fatigued, couldn’t focus, got extreme sensitivity to cold from both taste and touch. She couldn’t walk barefoot in the kitchen without loosing sensation in her feet. She couldn’t pull things out of the fridge or freezer, couldn’t drink anything that was even cold, much less containing ice. Her potassium levels started tanking (which is, among other things, very bad for your heart). As tired as she was, she also suffered from insomnia. Nausea and vomiting came in waves, and the complications from the surgery meant she developed Short Gut Syndrome. She lost weight at a dangerous speed. And there were other side-effects. Eventually, it reached the point where she had to take a medical leave of absence from school, which was a devastating personal blow. She was later able to return to her old job, which was fortunately willing to be flexible with the hours and her needs, but school is such a deep and driving dream for her.

So why am I telling you this?

At the end of the month, my mom will be going into surgery again, a couple hours south of home. There’s a doc in DC that specializes in developing treatments for rare cancers. This protocol he’s developed, which other doctors also perform, is an aggressive combination of a long, intensive surgery and directly-applied chemotherapy. The side-effects of a direct-application chemo wash are significant, not to mention the incredible strain on the body that a long surgery produces. Provided all goes well, she’ll be in the Intensive Care Unit for several days, and then on the main surgical floor for two to three weeks (also provided all goes well). It’s an aggressive procedure, but it has a decent success rate, and if it does work, it has a significantly higher quality of life standard than continuing traditional chemo, which has thus far prevented new growth but not diminished old growth.

And we have no idea how much it’s going to cost.

Thank God, she has insurance through her job, but we don’t know how much it’s going to cover. We heard back from the office of the doc who’ll be doing the surgery, so we know things are covered on that end, but the hospital is a completely different story. Right now, her two-person household is a three-quarter income household, and once she goes down for surgery, she’s not going to be able to work until she’s fully recovered. She tried to make arrangements to work from home, and the doc was certainly willing to sign off on it, but the confidential nature of the work she does makes her employers unwilling to make the arrangements on their end. She has insurance, but no sick time. Some of her co-workers even tried to give her some of their sick time, but no dice. Her job will still be there when she gets back (and even that is a small miracle) but for the duration of her recovery, both in Daytona and here, there’ll be no income.

My mom was lucky enough to form an incredible study-group with some of her fellow Hoyas, and they support each other like you wouldn’t believe. Her phone is always going off with texts, and they moved from study-buddies into genuine friendships. When she had to take her medical leave, they kept her involved in classes by asking for her help editing papers, or helping them go over tests. When the rest of the group had to head to DC for an on-campus intensive for clinical skills, they printed out a picture of her from the previous OCI and Flat Stanley-ed her. They took ‘her’ along with them to clinicals, to meals, to drinks, to the hotel, out on walks, everywhere, and sent her pictures. They’ve committed themselves to helping her study when she comes back from medical leave, and if the procedure is successful and she’s able to join back in summer or fall semester, she’ll actually be able to walk at graduation with them next year.

And they’ve started a gofundme for her medical bills. Cancer is a debilitating disease–physically, mentally…and financially. It’s easy to say to ignore the money and focus on getting better, but that doesn’t work if the money ISN’T THERE. There’s only so much you can put on credit cards before you reach your limit, and all the well-wishes in the world don’t pay the rent.

I’m not really one to ask people for money, largely because I know better than most just how tight money can be. I live well below the poverty line, and am currently unemployed. The one advantage to that is that I can be down there with her at the hospital. But..I am asking. Politely, and with the complete understanding that money is tight, I am asking. If you can give anything to this fund to help my mother pay her medical bills and keep a roof over her head, even just a few dollars, THANK YOU. If you can’t give financially, you can still help by boosting the signal and sharing it with others, and THANK YOU. It’s funny, you’d think I’d be pretty good with words given the whole writing thing and all, but words really can’t express how grateful I will be for ANY help than can be given.

Again, here’s the link to help my mom hopefully kick cancer’s ass and still have her life to come back to when she recovers.

For any donation, for any share, for any signal boost, THANK YOU.

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An Experiment in Control

February 6, 2014 at 8:36 pm (General, Writing) (, , )

Tomorrow marks two weeks of unemployment for me. I’m not panicking yet- last time I couldn’t get a job, it stretched for a whole six months- but it’s led to a lot of thinking for me, in between the cleaning and procrastinating. Mostly, I’ve been doing a lot of thinking about control.

Because realistically, I can’t control my employment. I can put out applications, I can search and interview and do my best, but I can’t control what actually happens. It’s led me to other things I can’t control.

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I can write the best book I can write, but I can’t guarantee that the book will sell better than my writing a custom annotated bibliography practice back in the time when I was a student. It’s out of my hands, and in the hands of an editor who can decide that he or she wants to buy it. I can do my best, my fabulous agent can do her best, but in the end, it depends on a lot of factors, like what else is in the catalog, like what the current trends are, like the purely subjective likes and dislikes of an acquisitions board. A lot of factors, factors over which I have no control.

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Once a book is out there, the way it’s perceived is entirely out of my control. Books become, to many readers, very personal things. The way we enjoy them, the way we react to them, says a lot about us. I can’t control what people think of my writing. Once it’s out there, I can’t argue with people that I think miss the point, can’t tell them what I meant to do. Hell, J.K. Rowling is a superstar and she can’t get away with it without a furor. And really, that’s as it should be. Once it’s in the hands of the reader, it’s open to interpretation, to personal perception. I can’t make anyone like my book. I can’t control whether or not someone enjoys it. Love it or hate it, it’s out of my hands.

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Publishing is a crazy industry that attempts to balance art and business. It’s a juggernaut, really, that steams along to its own timeline. There are eight million numbers and considerations and factors and none of it is in my hands. I can make my contributions on one end or another, but I can’t control it. YA readers on Twitter the other day may have seen #TheArchivedNeedsaThirdBook. For some context, The Archived is an absolutely amazing book by Victoria Schwab. It’s creepy and atmospheric, exciting, heart-wrenching, unexpectedly funny, with the lyrical, gorgeous writing we’ve come to expect from Victoria. It’s sequel, The Unbound, came out at the end of January, and it is just as good. Where the first book was an external enemy, this book is largely internal; the main character is shattering and struggling to make everyone believe she’s okay. A very large part of this book is the realization that it’s okay to NOT be okay for a while after trauma. The story is such that things can end here; it’s the characters that need a third book, and there was originally supposed to be one, but as we know, in publishing, sometimes things happen. They’re not done intentionally, they’re not done to hurt anyone, but it is, at the end of the day, a business, and a business is about numbers and projects and yes, about passion. The hashtag was a fan movement to try to sway the publishers, but at the end of the day, a trending hashtag isn’t going to make a difference to the business. (It will, however, make a hell of a difference to an author to get that kind of outpouring of love and support). What makes a difference to the publisher is sales. Aside from the contribution of buying books from authors I love so they can hopefully make more of them, I can’t control other books. I can’t control other authors. I can’t control publishers, or timelines, or release dates. I can’t.

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I’ll be honest, Other People as a collective tend to piss me off. Not in a “you’re awful” kind of way, but in an “I don’t want to be dealing with you” kind of way. I am an introvert; I prefer not to deal with people if I can possibly avoid it, because I’m awkward and self-conscious and I hate feeling like an idiot in social situations. But I learned a long time that I can’t control other people. I can’t control behavior, or statements, or preferences. I can take accountability for my own actions, but not for theirs. I can’t control luck or good fortune, or bad fortune, I can’t make other people live with compassion or mindfulness.

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There are so many things out of our control it’s frankly a wonder we can convince ourselves anything IS in our control. There is so much about life that we don’t get to decide. We can’t choose the weather, or the climate (unless you choose to move, but even then, have you noticed how things have been recently?). We as individuals have a say in our government, but we don’t really choose it. We can’t control the jury summons or the illness or the falling in love. We can’t choose a lot of things, and where there is no choice, there is no control. It all seems rather a hopeless business, doesn’t it? But there’s something comforting, in a strange sort of way, about acknowledging how small we are, how generally powerless we are. Because when we admit to ourselves all the things we CAN’T control, we start to understand the things we CAN control.

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I can’t control what happens with my writing, but I can control the writing itself. Yes, there are bad days, where every word is a struggle and I’ll probably end up deleting most of them the next time I sit down to work, but those are generally rare. More to the point, what I can control is sitting down and DOING IT. I can control the process of sitting my butt in the chair and WRITING. I can choose to open the file, the notebook, the book. I can choose to exercise my craft and expand my voice. Whatever comes after is out of my hands, but it is precisely in my hands to shape the story and spill it onto the page.

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I’m not by nature a disciplined person, but I can change that. I can control that. I can make it better. Right now my apartment is slowly getting cleaner than any living space of mine has probably ever been, and it’s kind of creeping me out a little, because everything is getting organized and neat and in its place, and that’s just not normal for me. But I’m making the choice, here and now, to keep it that way. To start the good habits and maintain them. I’m usually someone who waits for the mood to write, or who waits for the day off, but I would very much like to get into the habit of writing at least five hundred words every day. Even if it’s not on my main project of the moment, just so I’m writing SOMETHING every single day. Starting good habits is hard. Maintaining good habits is REALLY hard. But- I can choose to have the self-discipline to enforce them, and right now, I choose that.

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I’m not able to control what happens to my books, but I can choose to keep pursuing the goals I’ve set. I can control whether or not I give up. Determination, persistence, they’re hard, especially because they traverse so close to the border of delusional and trying too hard. Sometimes, no matter how badly we want something, no matter how hard we work for it, it just doesn’t happen, and we do have to accept that. Sometimes that means we have to shift our goals. It doesn’t mean we have to give up. Determination got me my first book deal. I can choose to continue that determination.

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Okay, so this one is actually really difficult. Life has a way of throwing things at us, and it’s hard to control your outlook in trying times. But if I can’t control my emotions well enough to be optimistic, I can at least control them enough to not wallow in misery. I can choose to temper my outlook with a bit of joy and hope, or at least a really sick sense of humor. I can’t control the world, but I can control how I look at it, and I can control how I choose to move through it.

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Because at the end of things, the only thing I can really control is myself. All those other factors, all those other things, that I can claim to control, all those really boil into one single thing: me. And as long as I can control myself, as long as I can choose to make myself better, to do better, I can get by.

And what that also made me realize is something else I can control.

My gratitude.

So.

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