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. :-)

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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.

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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.

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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.

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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.

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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.

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Sanguine, Mostly You…

Sanguine, Mostly

You seem so calm.

My doctor says this to me, when I call her
two days after diagnosis, ready
with lists of oncologists to consider,
my calendar open. Lets get this thing done.

She sounds almost worried that I
do not sound more worried, that perhaps
the truth hasnt sunk in. I rush
to reassure her that I have my weepy
moments. Im just action-oriented;
I like to make plans and follow through.
I am more ready than she is.

The waiting is the hardest,
more than one person has said.
I doubt thats true, but it is certainly
maddening. I may procrastinate
unpleasant e-mail, tedious grading,
but when the truly terrible looms,
Id rather dive in, headfirst.

The Greeks divided us by humour:
the excitable were choleric and melancholic;
the calm, phlegmatic and sanguine.

I am steadiest in the morning, when
I can do research with a clear head,
take calls, make plans. I am even
calm enough to reassure the people
who love me, many of whom possess
a more mercurial temperament.

I am glad to do that for them, to
make small jokes, laugh it off.
Then evening arrives, and the weight
of the day descends, with all its petty
frustrations and greater fears.
Then I take to my bed, curl around
the drowsy dog, pull the covers high.

You may just sail through this,
my doctor says. Maybe. Maybe not.

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Cancer log 6: I know…

Cancer log 6:

I know there's been a flurry of these; it'll slow down soon. Pent-up energy from needing to be quiet for a bit. I'm about to go get on a plane and may be mostly offline for the next few days at a baby shower (babies, yay!), but wanted to do a quick recap of today's MRI.

So, this was not quite as much fun as I'd hoped. At first, it was straightforward enough -- strip to socks and undies, put on a robe. Wait around 'till she was ready for me. I found myself somewhat anxious, for no good reason. And then she reminded me that I was getting an MRI with contrast, which meant needle poking -- she had to put an IV line in for the contrast dye. Ugh. I did a bunch of IVs during the pregnancy, and I can't say I loved them (although sometimes, when they were giving me fluids, they did actually make me feel better). The MRI nurse was not so great at inserting it, so there was a good minute of stinging poking about -- I've had way better. Ah well.

Afterwards, I felt a bit shaky -- I get dizzy sometimes when I do blood draws and other needle stick things, and have even fainted a few times. I've gotten better at managing it so as not to faint -- lots of deep breathing really helps, and thanks again to my advisor Katie Coles who ran into me in the halls before my doctoral exams, where I was panicking, and quickly talked me through deep breathing; it has been useful many a time since. Still, I felt kind of woozy when I lay down. I figured I'd being lying down for forty-five minutes, though, so I should recover quickly.

Instead, I felt cold and shaky for quite a while. The process of getting into the machine was less than dignified; after putting in your ear plugs, you have to basically crawl up onto a bed and then lie down with your breasts hanging down through holes in the bed. Then there's a fair bit of readjusting to try to get as comfortable as possible (because you're really not supposed to move for the next forty-five minutes, or you'll get blurry images), and the tech moves your breasts around a bunch and wedges them into fixed place. You slide into the machine, and if you're claustrophobic, I'd recommend just keeping your eyes closed.

Eventually, I warmed up -- not sure why. I got drowsy inside the machine, because I didn't sleep well last night, but actual sleep was impossible because there were frequent loud noises -- and they varied, so it wasn't as if you could get used to the pattern of them. It felt like being inside a huge old school copy machine, actually. A piece of the machinery, and a faulty one at that. You're the thing causing the jam.

In retrospect, I wished I'd asked her if I could move other bits of me. Would wiggling my toes be okay? What about my fingers? Could there be stretching breaks, so I wouldn't get pins-and-needles? It's all mild discomfort, but it was annoying. And perhaps because I was at a not-very-high-end hospital (I have HMO insurance), there was no music playing, which really seems like a bad choice. It would have helped a LOT to have music in the background to focus on.

So, woozy from start to finish, and cold, and a stinging hand (she found a vein in my wrist eventually). MRI -- not the most fun ever. But also not actually horrible or anything. I won't be eager to repeat it again, but I'm enough of an experience junkie to be moderately okay with having gone through it once.

Results next week, and hopefully actual staging. Onward.

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Cancer log 5: It’s…

Cancer log 5: It's funny, the things that help. Friends and family, of course, are all the comfort and support that you'd expect. But my two professions are writing and teaching, and I have to tell you, I've been living with this potential illness for several days now, waiting for results, waiting until it was appropriate to inform the family, and it has been really hard keeping quiet online about it.

Some people, I know, prefer to be private, and obviously, whatever gets you through, you do that. But for me, I take refuge in the two things I know how to do, the two things that might even help somebody else. I process by writing (sometimes in a form that's explicitly educational, sometimes not), and I gain comfort from sharing the writing. When I work to make the experience make sense to others, in poetry or prose, it helps it make sense to me too.

Perhaps this is why I started blogging, almost twenty years ago. Did you know that my blog is the third oldest continuous blog on the internet? #themoreyouknow! Blogging has helped me so much over the years, and it would be nothing without the readers. I tried keeping private diaries a few times, but they always fizzled out. This blog, this Facebook, these various forms of speaking -- they've been my therapy, my tool for introspection, my community.

Thanks for listening, people.

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Cancer log 4: So, some…

Cancer log 4: So, some people close to me were hit hard by this news -- my immediate family, of course, and also close friends. People further out have also been affected, some of them more emotionally than others. I am doing okay generally, so far, and I haven't had any trouble with any comments on my wall or in e-mail or anything. But some parts are likely going to be rougher on me, and rougher on those immediately supporting me, and so I take this opportunity to bring you the excellent Ring Theory of Kvetching, which is useful in so many of life's difficult situations. I found this framework very helpful to me, personally. Use it wisely.

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