Cancer log 15: Cancer…

Cancer log 15:

Cancer is everywhere. At the grocery store this morning, the bagger was telling the customer in front of me and the checkout person about her granddaughter who had recently passed away from brain cancer; ten years old. I don't know what started her on the subject, but she just couldn't seem to stop talking, poor thing. And we're all standing there, trying not to cry, because it's just so horrible.

Last year, a friend of mine died from cancer, and a colleague as well. I know several other people dealing with it right now, including some folks who were private enough about it that I didn't know they had cancer until they e-mailed to tell me after learning my diagnosis.

I feel like it's in the media too -- on three separate shows I'm watching, cancer is a major aspect at the moment. And it's not surprising, when you think about it; it makes for terrific drama. Will Luke's sister donate part of her liver so he has a better shot? Will Christine Braverman risk recurrence of her cancer if she runs for mayor? Inherent drama, and lots of it. You really couldn't expect tv shows to stay away from the topic, but still, it occasionally hits me, like a punch in the gut.

And it's in the news too, lots of little articles and essays and memoirs. This morning, I read Oliver Sacks' graceful and moving piece as he faces the end of his life after a cancer recurred (thankfully, at the very respectable age of eighty-one). A New York Times article I posted a week or so before my diagnosis talked about how it seemed like cancer was everywhere -- their argument was that this was actually a good thing, because it meant that we were slowly conquering all the other things we used to die of. Cancer and heart disease are the main ones left, the ones that will get most of us in the end. Hopefully later, rather than sooner.

Sometimes it's overwhelming -- it feels like I can't go a day without some other reminder of cancer. It feels like I can't go an hour, which is particularly frustrating on days when I don't have any doctor appointments and all I want to do is just focus on my normal life -- teaching and raising my kids and spending time with my friends and writing. Even doing the laundry and the dishes is better than thinking about cancer, and it seems unfair that it's so omnipresent.

But I think it's like when you want kids and your partner doesn't, or when you're trying to get pregnant and it's not working, and either way, you're not sure if you're ever going to get to have the children you want. You see babies EVERYWHERE. The world seems saturated with baby stuff, with breastfeeding moms, with kids at the playground and ads for diaper bags, and mostly it's okay, but sometimes, it feels cruel, it feels like the world is trying to break you, that it has sent this adorable little kid across your path with her red balloon, just so you can fall apart in the middle of the subway station.

And of course, it's not actually that children are so omnipresent (although they're pretty present), or that cancer is. Both of them are there, part of life, inescapable. Both will cross your path, likely often, but it's because of your current condition, because you're seeing through child or cancer-colored glasses that their existence impinges on yours so strongly. Sometimes it won't bother you; sometimes, it'll hit you, like a punch in the gut.

You take a breath. You turn your attention elsewhere, when you can. There is laundry to be done, and dishes. There are books to read and books to write. There are friends and family to appreciate. Right now, Mary Robinette is sauteeing apples in butter and sugar, and the scent is filling my house, and soon there will be creamy apple tart.

I choose to think about that. Mmm....apples.

Cancer log 14: Even…

Cancer log 14:

Even though my prognosis is overwhelmingly positive, I still have occasional strong urges to act as if I have a terminal diagnosis. This mostly seems to manifest with food. For example, today, I had a six-inch meatball sandwich from Subway, with jalapeos, which is a food I've loved for twenty years. It's ridiculous food, and very far from healthy, but sometimes, the heart wants what the heart wants, especially when one has received a reminder of one's mortality. Injera will likely be on the menu sometime soon, even if I tend to eat it so fast it makes my stomach hurt. And possibly even McDonald's cheeseburgers, which I prefer served cold.

Don't judge me; I have cancer.

:-)

Cancer log 13: I…

Cancer log 13:

I don't have any disease symptoms, and with any luck, never will. I will soon have treatment symptoms. But what I have right now are diagnosis symptoms.

I'm doing mostly okay, but here are a few ways this diagnosis has affected me so far:

  • For the first two weeks, Friday to Friday, it'll be roughly 40 hours, or 20 hours / week, of dealing with the diagnosis. This is all medical necessities -- doctor appointments, biopsies, MRI, being on the phone scheduling doctor appointments, chasing down referrals, talking to the nurse coordinator about what CDs of what films I need to bring where, talking to her again about it because I forgot the clear instructions she gave me the first time, going to pick up the MRI CD and finding their CD burning device is broken, calling back again, and the next day, to find out it's still broken, etc. and so on.

  • I've spent probably an equivalent amount of time talking to people. I had to break the news to family and close friends, which was stressful, and then there was telling the internet, which was less stressful, but all of it was time-consuming -- not so much in the telling itself, but in the dealing with responses. Even though the responses were pretty uniformly wonderful, supportive, affectionate, etc., answering e-mails and talking on the phone or in person just takes time. I think the deluge has passed now, though, and it feels a bit churlish to complain that I have too many friends. I really am grateful for all of you, each and every one, and all your kind words, e-mailed advice, offers to talk (especially from survivors), etc. All at once you're a bit intense, that's all! (Comments on my public Facebook posts are the best, because while I love reading them all, I don't feel socially obliged to respond.)

  • This has all taken enough time that I'm still not done with the WisCon Chronicles anthology editing project that I'd expected to have done a week ago, and yes, it's annoying and stressful, having my last responsibilities for that hanging over my head. Will finish and hand it off to the Aqueduct editors this week, come hell or high water (they've kindly taken over everything they can, which I am SO grateful for, but there are few last bits I need to do).

  • I have been a bit weepy on occasion, but mostly not, so far. I imagine there'll be more of that once treatment starts. But what I have been is tense. The first day after diagnosis, I snapped at the children several times, until I finally took myself away and let Kevin just have them. The muscles of my back are knotted (when I have a little more free time, I'm going to book a massage), I'm walking faster than normal, and when people move to touch me, even though I appreciate the impulse to hug or touch my shoulder or knee (both my doctors yesterday were reassuring-knee-patters), I tense up a bit.

  • Similarly, I've been driving more aggressively, Kev tells me, and making slightly poorer decisions while driving -- you know, the split second when you're deciding whether to try to take that left turn or not? The last week, I've found myself hesitating, then speeding into it, which is undoubtedly confusing and irritating to everyone around. I'm working on being aware of that, being more careful, and minimizing driving as much as I can -- luckily, I don't actually have to do very much of it. It's getting better already too.

  • I am tired, with a physical fatigue that feels as if first someone pummeled me with sand bags (not hard enough to bruise, but hard enough to feel it), and then tied a few bags on, so that my limbs are dragging. I'm mostly getting enough sleep and exercise and good food, so I think this exhaustion must be a manifestation of the stress and shock. It should pass.

  • I have really limited energy for taking care of anything or anyone else. My kids are fed and getting to school, but Kavi is behind on homework, their rooms are carpeted in clean clothes that got sorted but never put away (which drives me nuts when I go up there, but...), and they haven't had a bath in three days. I just watered the plants on the first floor, and they've recovered, but they were quite droopy, and the second floor plants look like they're about to keel over -- we'll see if they make it. Kevin is doing what he can, but he is, of course, also stressed and wanting to just sleep more than normal. I've been neglecting my friends, who, thankfully, mostly have other people they can lean on.

  • I am so grateful for this cancer log -- if I weren't doing some kind of writing, I'd just lose it, I think. And I haven't been in the head space for fiction. I've scheduled a writing day for Thursday, though, and I'm hoping to get back to the novel then. Too long away from it makes me seriously twitchy.

The waiting / figuring things out period is almost over -- I'm hopeful that next week, I can start actual treatment. Once I do, I can at least check off the box -- "survived diagnosis, didn't injure anyone else in the process." That'll be something worth celebrating.

Cancer log 12: …

Cancer log 12:

Pro-tip, oncology nurse. Maybe your *first* question shouldn't be, "Do you have a Living Will?" It throws a girl off her game a bit.

I finally have a treatment plan. Or sort of, anyway. I met with an oncologist and surgeon today (which, btw, took from 10:30 - 4:00, and I don't know how people without flexible jobs manage this kind of thing). I was hoping for a concrete staging, but it turns out that the MRI found a few other suspicious 'things.' We're going to do another biopsy Thursday morning (more needles, joy) to check out one of them -- depending on the results, I'm either going to be considered stage 1 or 2. Both still have very positive prognoses, and it probably doesn't really matter which right now, as the treatment plan is basically the same. But it would be nice to know -- uncertainty drives me a bit nuts.

Other results have come in -- my tumor is estrogen, progesterone, and HER2 positive, which are apparently good things -- it means that it should respond well to some targeted drug therapies, and ups my chances of survival. I still need to do the BRAC gene testing (as soon as my insurance approves it) -- if that comes back positive (unlikely, I think?), then I'd have a much higher risk of recurrence. We'll see.

Regardless, the next step is a five-month course of chemo. Yay. On the minus side, my hair will fall out (completely? not sure.) and there will undoubtedly be some serious fatigue. On the plus side, the anti-nausea meds are apparently much better than they used to be; I should be able to eat, mostly, and not be vomiting all the time. Which I'm really relieved about; I *hate* nausea with a passion. Honestly, the side effects sound a lot like the rougher parts of pregnancy, and I got through that, so I imagine I can manage this too. I am tentatively planning *not* to cancel my scheduled conference travel in March, assuming it works with the chemo dates. More on that soon.

After that, surgery, then possibly radiation. What kind of surgery is unclear right now -- we'll see what the biopsy says, and then how the cancer reacts to the chemo. At least a lumpectomy, possibly more. I had a somewhat politically fraught conversation with the surgeon about reconstruction, but I'm going to save going into that for another log (and probably another day). Second opinion scheduled for this Friday.

I am wrung out -- even though everything was mostly as expected, it was still hard to hear. (And I was very glad Kevin was able to come with me for the oncologist appt. -- thanks to all of you who recommended taking a friend; I wouldn't have thought to ask him otherwise.) After I came home, I tried to scan some materials for tomorrow's class, and my new computer didn't have the right scanner driver, and when I tried to download one, I got the Windows version by mistake, and I couldn't get it to work until Kevin came up and told me what I was doing wrong and by then I was crying over the stupid scanner driver, only not really, of course.

It's okay now. I've given up on cooking dinner today and ordered takeout Indian food, a rare treat. Samosa chaat, mango lassi, lamb vindaloo, tandoori chicken, saag paneer, aloo gobi, and garlic naan -- it's enough food to feed us for the rest of the week, which sounds about perfect right now.

Cancer log 11: So, I’ve…

Cancer log 11: So, I've figured out how I'm going to monetize my cancer. Of course, I hope to write a gripping (bestselling) memoir about this one day, after I've struggled and triumphed -- but that's likely quite a ways off, and I am more of an instant gratification kind of person, especially these days. So in the meantime, I'm going to turn to Patreon.

Here's the set-up -- I signed up for Patreon in January, but wasn't sure how I would use it, or if it would be useful at all. The idea is that you have patrons who pledge to support you monthly (like a NPR pledge), and whatever they pledge gets charged to them at the end of each month, and in exchange, you send them your work. Whatever you write, photograph, etc. gets sent directly to their inbox (although I think they can opt out of that if they'd rather check the web page). Several people pledged, mostly at the $1 / month level, and I wasn't sure what I'd write; I quickly found that I was writing more poetry than anything else. It actually worked to motivate me to write a little more than I would have otherwise, which was the original hope.

Now, I'd like to turn it into a cancer-themed project. I'll keep writing these cancer logs, and the poems, and that's what I'll post on Patreon. I'll *also* post them on Facebook and my blog, so there's really no need for you to pledge at all. But if you do pledge, that'll ensure you don't miss any of them. Also, I'll plan (health permitting) to send all the donors a PDF (and possibly Kindle file) of the complete set, whenever I decide I'm done blogging about this. I may then try to turn it all into a book of some sort, but that'll mean editing, finding a publisher, etc., which may take some time.

As for what I'll do with the money -- I'm basically thinking of this as my treat fund. If I get thirty donors pledging a dollar each, then at the end of the month, I have $30, and I can go out and treat myself to a very nice sushi lunch. Or perhaps a series of coffeeshop chai lattes, or an Ethiopian dinner for two. I might pick up a cozy sweater, or a new video game. I feel sorry for myself on occasion, esp. when sitting through unpleasant procedures like last Friday's MRI, and it'd be nice to counter that with the expectation of something tasty (or warm, or entertaining).

I might occasionally write other poems/pieces too, parenting stuff, etc., but the main focus will likely be the cancer material. I'm also writing an epic SF novel, but that's its own thing, and my agent will take care of selling that when I finish it. :-) He'd probably rather I didn't post it all on the internet beforehand.

I think that's it. Thankfully, Kevin and I aren't in any kind of financial need -- we don't need these funds for my medical treatments at all, so please don't feel obliged to become a donor! Mostly, if you think you'd like to get a copy of these entries and poems sent directly to you, Patreon makes it easy to do that, relatively cheaply. :-)

Cancer log 10: Today…

Cancer log 10:

Today I meet a potential oncologist. I am already planning what Ill wear for the appointment  something professional, not too formal, the kind of outfit I wear for teaching. Im paying attention to this for the same reason I think about what Ill wear when Im going to be flying.

In a potentially fraught situation where strangers will have power over you, and where their opinion of you can affect how well they take care of you, it cant hurt to have them see you as someone worthy of treating well. It might help.

I used to wear t-shirts and torn jeans when I flew; after 9/11, I stopped dressing that casually. I have brown skin, after all  dressing in casual clothes felt too risky. Airport personnel were politer to me when I was a little more dressed up, were more likely to go out of their way to get me on a flight, or to change the seat assignment so I could sit with my little girl. The clothes made a difference, and the polite, educated English my class background provided probably didnt hurt either.

I hate that I have to think this way. Everyone should be afforded those same courtesies, regardless of their appearance. Everyone should get equally kind, considerate, thorough and competent medical care. And there are, of course, many medical professionals who do offer that level of care to all their patients, even the dirtiest, smelliest ones. I have known doctors and nurses and techs who couldnt care less what you looked like  you could tell from the first words you exchanged with them that they were going to give you the best possible care no matter what.

But people are only human, and most of us are socialized heavily to respond to class markers, on a completely unconscious level. With my life on the line, I find that Ill take any edge I can get. So Ill put on a cute outfit today, the kind my doctor might be wearing herself, under that white coat, and Ill be grateful that I have the financial ability and the class background knowledge to facilitate dressing that way.

Maybe someday, I can do more to change the system. Today, the priority is staying alive, so I can fight that fight another day.

Invictus Out of the…

Invictus

Out of the night that covers me,
Black as the pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds and shall find me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate,
I am the captain of my soul.

- William Ernest Henley (1849-1903)

This is one of the very first poems I memorized (right after Jabberwocky), when I was fifteen or so. It spoke strongly to me then, and even though I tend to find it a bit overwrought these days, it's been popping into my mind somewhat frequently the last week. I may even have chanted it a bit in the MRI machine. So, let us give Henley his due.

Cancer log 9: The…

Cancer log 9:

The first time I got together with a friend after the diagnosis, she said I could eat whatever I wanted now. Cancer was a free pass! Chocolate, ice cream, whatever. I demurred -- we were about to go on a long walk together, for exercise, and after a month's concerted effort to eat healthily and lose a few pounds, I wasn't ready to just throw all that effort away. Besides, it would be better if I were in stronger physical shape to fight this thing, right? When I exercise regularly and eat a lot of protein and very little in the way of pure sweets, my body feels so much better. So no over-indulging; let's just stay on track.

Which worked fine for the first week, but then there was a lush Valentine's dinner and then there was going out of town for my sister's baby shower, and the shower weekend was great, but mostly we sat around the house with family for three days and talked and did jigsaw puzzles and ate and ate (it was way too cold to go for long walks), and the whole healthy eating plan totally broke down for a few days.

There's certainly a temptation to let it go all to hell. I have cancer -- I can eat whatever I want! As much as I want! But the truth is, my initial impulse was right; the healthier my body is, the better. I may not try to lose weight in the next months of treatment; I'm not sure that'll be the right place to put my energies. But eating sensibly, yes. Maintaining fitness.

And y'know, even before the diagnosis, I actually was eating anything I wanted -- just being careful about how *much* of it I ate. I see plenty of curry and chocolate in my future, and even some ice cream. Along with lots and lots of long walks.

Odds are, this is a one-year thing, and I'll be living in this body for decades after. I think it's important to think about short-term desires versus long-term health.

It feels like when I was pregnant -- there was a temptation to lie around and eat bon bons all the time, but it became clear that I would actually feel much better and get through the pregnancy more easily (and the post-pregnancy period) if I stayed as healthy as possible. Physical activity was important, even when I was somewhat tired -- in retrospect, I wished I'd done more maternal yoga, for example. There were days when the fatigue slammed me and I just conked out, and that's fine, but the other days, pushing a little would've been a good thing, I'm pretty sure.

If I had a terminal diagnosis, rather than a 95+% cure diagnosis, my calculations would be entirely different.

Cancer log 8: I…

Cancer log 8:

I thought I was doing okay; I mostly am doing okay. But last night, I woke up from a long unpleasant dream in which I was bleeding, and then, in the middle of teaching a class, I realized I had some sort of thing in me, and I reached in and carefully, slowly, pulled out a long snake-like creature with big mouth, full of teeth. Sort of like a tapeworm, but bigger; in the dream, I was terrified that I would break it and leave part inside. I may have triumphantly displayed it to the class once it was all out.

I woke up at that point, realized immediately that this was a fear-of-cancer dream, and went back to sleep. Damn, cancer. Invading my dreams like that. Youre sneaky.

Cancer log 7: It

Cancer Log 7:

It's hard to know how seriously to take this. On the one hand, the potential consequences are dire, a stark reminder of my own mortality and everyone elses. On the other hand, my odds are likely extremely good, because it was caught so early, and because breast cancer treatment is so well researched. (Insert obligatory paean to science.) On the third hand, one in eight American women will develop invasive breast cancer. This is not rare, and in the past few days Ive gotten literally dozens of e-mails from friends who have gone through cancer treatment, the vast majority of whom are now well-recovered, years after treatment.

I end up fluctuating between freaking out and feeling like its actually not that big a deal. I mean, its clearly a big deal, but if one in eight women are going to go through this, Im not some special snowflake for having this happen to me. Its actually a bit comforting, in a way  there was definitely an initial Why me??? response, but if its that common, well, why not me? And as an article I read recently pointed out, the vast majority of us are going to be taken out by either cancer or heart disease in the end. So this hit me a little young; odds were, it was coming eventually anyway. At least theres a really good chance I can evade it, possibly for decades.

All of which does make me feel like writing about it this way is, perhaps, a little over-dramatic. That first poem about diagnosis, for example  that one was pretty morbid. The initial impulse to start making detailed video letters to my children, should I not be around for the rest of their childhoods  total overreaction, and way ahead of the game. Im a little embarrassed, in retrospect, by the first nights weeping.

But. Cancer is a big deal, even if its relatively common, even if my odds are excellent of beating it this time. And part of whats great about poetry is that it can be very of-the-moment, capturing the intensity of what youre experiencing, right then, even if your rational mind catches up the next day and is embarrassed by those emotions. I was embarrassed by some of my broken-hearted break-up poetry too, especially after Kevin and I got back together. Oops.

Still, the moment was what it was, and as a writer, my hope, always, is to capture a few truths of the human heart. Foolish and emotional and overreacting as it may be.