Lost Time, Updates on the Rollercoaster Ride, and Emily Dickinson

Time has done some weird stuff lately. In between rushed medical tests, phone consults and e-mail consults with doctors, I’ve been losing hours – not reading, writing, responding to e-mails, but just – lost. I’ll chalk this up to stress, this misspent time. I’ve appreciated all those who have left notes, visited with me, written e-mails and called, those who sent flowers and cheerful messages in my last two stressful weeks. I remember that I am lucky to have quite a community, not only in person but online. You guys really do make a difference, so thank you.

I apologize for not giving updates and answers. Besides a nasty case of stomach flu I caught in between doctor appointments, after various multi-doctor get-togethers, they’ve decided to run some more tests, so I’m going in for some blood work first thing Monday morning, and then maybe a radioactive trace test to see if the liver growths might be some kind of benign solid growth …which may be good news or bad news or just medium or tedious. I am hoping for good to medium-tedious news, an outcome that won’t result in anything scary (or any more tests.) Still hoping to dodge the bullet of possible cancer or even dodge the liver biopsy, if it is possible.

During this time, several of my family members and close friends are facing their own serious health crises with various levels of grace, terror, sadness, anger, frustration. It is more terrifying watching loved ones struggle than it is to struggle yourself, as I realized a few months ago watching Glenn in the hospital. I always wish there was more I could do.

You can’t always protect yourself from danger, or bad news. We can’t ignore pain, or illness, or losing people we love. We are vulnerable and mortal. I read a lot of Emily Dickinson this week, and I realized – I don’t think she was very scared of death. “Because I could not stop for death” is almost a cheerful poem, while “I heard a fly buzz – when I died” imagines, in a sort of disembodied way, the tiny mundane fly on the other side of her own dying moments. I mean, she’s pretty gangster – she has the opposite of fear, she has curiosity. Definitely a therapeutic read during a stressful time.

Here’s a little XKCD comic for a lighter-hearted look at her poem:

We just lost two courageous and terrific writers, Harper Lee and Umberto Eco. It’s a good time to re-read Six Walks in Fictional Woods, or Foucault’s Pendulum, perhaps. “To survive, we must tell stories,” said Eco. It made me think: What kind of stories are we telling – ourselves, others, in our work? What stories will we leave behind?

The Roller-Coaster Ride of Cancer Tests, Bucket Lists, and Stages of Grief

Happy post-Valentine’s Day, everyone. I’ve been dealing with some heavy news, and not sure whether to or how to share it. This post may disappear later, or parts of it will. For now, for anyone that’s been following my health scare from the last post, here’s the follow-up.

After the CT scan in the emergency room about ten days ago, things went from bad to worse. The CT scan showed 4-5 lesions suspicious for metastasis in my liver. The follow-up MRI a few days ago, which is supposed to be a more accurate test, said the news was even worse than we expected – 10-15 liver tumors, some of them 2.3 cm/2 cm (the larger the tumor, the worse the news, and the more tumors, the worse the news) once again, the report said, “suspicious for metastasis.” I was stunned. I think I’d honestly believed the first test was a fluke, but this report said no, it was no fluke, and yes, something seriously wrong was going on with my body. I got calls from my gastroenterologist and my hematologist – they wanted to go ahead with a liver biopsy, super dangerous for someone like me with a rare bleeding disorder, requiring not only an overnight stay in the hospital with the oversight of my hematologist – a leading specialist in weird bleeding disorders and rare cancer types – but taking some experimental drugs for my bleeding disorder I’ve never tried before, plus maybe blood plasma infusions. I want to slow down, make educated judgements, maybe get a second opinion. I still feel some paralysis when it comes to next steps. Maybe I don’t want any more bad news, and I certainly don’t want to die accidentally trying to get more bad news from a biopsy.

So that’s where I’ve been the last few days, trying to make sense scientifically and spiritually. A friend of mine in medical school has been calling regularly to help make sense of my test reports and doctor’s comments. My neurologist sent me a link to all the things that aren’t cancer that liver tumors can be, telling me she wished me the best and reminding me of the scare I had when they found the mysterious five lesions in my brain. People here on the blog and on Facebook have been as supportive as they possibly could be. My little brother came over the day I got the MRI news to help a somewhat shell-shocked Glenn and I deal with the news. It’s possible what’s showing up on the scans is a kind of fast-moving metastasized cancer – or something serious but other than cancer, like a serious infection or autoimmune problem that would still not be great news, especially for my liver. And I can’t find out exactly what’s going on without doing a test I don’t want to do next.

I started thinking about bucket lists – you know, the things you do if you found out you only had x amount of time to live. Most people think of exotic trips, jumping out of airplanes. I thought of the things I’d really want to do if I had very little time – spend time with friends and family, maybe make time to be with more animals (if someone could deliver a bunch of white fluffy kittens and miniature ponies to my doorstep I’d be much obliged), read, be in the woods. I’ve really, I realized, by 42, achieved a lot of things I’d always wanted – I always wanted to be a poet, and by the end of this year I’ll have five books of poetry out. I married a wonderful guy and this year we’ll have been married 22 years. I have pretty good relationships with my parents and my three brothers. I’m not going to leave behind small children. I don’t have that many regrets. I live in a beautiful place that I wouldn’t really want to leave – I’ve been to Paris and the South of France, I lived in Napa and Carlsbad, on islands like Bainbridge Island and a seaside resort town called Port Townsend – but I’m happy where I am right now. My bucket list wouldn’t include a lot of changes to the life I’m living right now (well, sans painful medical tests and doctor and dentist visits. I’d probably lose those. And maybe the house shopping – did I mention we’re still doing that? And taxes. I’m still worried about them.)

I want to go to the AWP LA, still. The thought of beautiful sunny beaches AND spending time with friends across the country is very appealing right now, I can tell you. Glenn’s Valentine’s present to me this year was a new piece of carry-on luggage (in pink! Valentine’s-y!) – a symbol of hope, of reassurance that I will still be doing things I want to do. I was joking I had gone through all the stages of grief with this bad and unexpected news – anger, denial, bargaining, depression and shopping…that’s a little humor, folks. I know the last one is acceptance. I just maybe haven’t quite made it there yet. I keep hearing the refrain from Liz Phair’s “Polyester Bride:” “He keeps telling me you’ve, you’ve got time/ but I don’t believe him/ you’ve got time…”

I’ve been reading the Bible with renewed interest (I don’t talk about it much here, but I am a Christian, I believe in an afterlife and maybe even a pre-life, the idea that our souls live after our bodies somewhere else, and probably lived somewhere else cool before we were born). I’ve been thinking about wills and living wills, graveyards and tombstones. I’m making plans I didn’t want to have to make for years. I’ve been thinking about the time I spent working with terminal children at Cincinnati’s Children’s Hospital all those years ago, how they cheerfully confront death, testing, and terribly painful treatments like champions, way better than the adults at the other hospitals I volunteered at. I want to be like those kids – taking the good stuff – playing with stuffed animals, coloring – in stride with equal grace as bone marrow transplants, chemo, and losing their hair. They were not afraid, and they were all pretty much, no matter what religion, convinced there was a Heaven and they were going to go there. They were, to a kid, unquestioningly brave. There’s a lesson in there somewhere for me.

I still have some scary stuff to face. The doctors don’t have all the answers for me. I may have to face already-metastasized cancer, and if this is something bad going on besides cancer, it’s something fast-moving and bad. Yeah, none of this stuff is wonderful for me to face. It’s not fun. I’m not sure how to handle everything, or process it. The science girl in me is doing lots of reading and research, and the poet part of me is sad I haven’t really been able to write about it yet, turn it into art. The rest of me just wants to hug my husband, my cat, listen to Nirvana, and watch things that make me laugh – old 40’s screwball comedies, Mystery Science 3000, 30 Rock reruns. I want to enjoy the things I can still enjoy. I want the maximum amount out of the life I have left.

When the Universe Delivers a Swift Shift in Perspective

I’ve been absent here due to a bit of a health crisis. The scary kind that catches you unaware, even me, seasoned health-problem pro that I am!

I was feeling crunched, worrying about finishing an essay for the upcoming Horror Writers Association newsletter, an article for Poet’s Market, edits for my PR for Poets book and trying to find blurbs for my upcoming poetry book, Field Guide to the End of the World. I was a little stressed, a little under the weather, trying to balance my writing life and everything else. Ironically, perhaps, I was also working on a talk I was supposed to give this Monday at UW Tacoma on overcoming discouragement and rejection.

But life likes to throw a little curve ball at us once in a while, and that’s what happened this week. Not only was I in the hospital by Wednesday, but I was given unexpected news due to some of the tests.

I know a lot of my friends in their forties, and even thirties, have already been through cancer scares, and I’ve even been though a couple myself. (I remember one doctor telling me when I was twenty: “It’s AIDS, lupus, or cancer. We’ll know on Monday. Have a good weekend!” PS: It was none of those things.) But in doing some tests for some terrible abdominal pain, they found something that might or might not be a serious kind of cancer. Only, they left me waiting in bed, not giving me any of my test results, for hours, which is unusual – in the same hospital a couple of months ago, they’d cheerfully come in to let us know the results of the same tests they’d run on me for Glenn within minutes of getting the tests. The nurse, when I inquired, said the ER doc would come in and give me the test results “after he talked to my doctor on the phone” – and the ER doc wouldn’t look me in the eyes as he gave me my diagnosis and check out information, telling me to follow up with my doctor as soon as possible. When they gave me my printed reports, there were the words from both the doctor and the radiology report: “concerning for metastasis.” I was on both painkillers, allergy and nausea medicines when I received the news, but woke up the next day thinking: Oh my God. What? It made all the things I’d been stressing out about seem puny and unimportant in comparison. I had to cancel a bunch of things as I rested up, barely able to eat or sleep for two days from the continued nausea and pain, intermittently looking up things like “Tumor Marker blood tests” and “what else could explain x (what they saw on the CT scan) besides cancer?”

One of the benefits – yes, benefits – of these kinds of health scares, the kind I’m going through now, is a kind of flipped switch of perspective. I’d been agonizing over rejections and no’s from people I’d asked for blurbs one day, and then the next I was thinking: Have I accomplished what I wanted to with my life? What would I regret not doing? How could I approach the end – if I had to – with grace and verve, like one of my role models who is going through liver cancer right now, still traveling and living like she has all the time in the world. She has not let herself become anything anyone would call a “victim.” But boy, it’s scary stuff, this life. All of us have an expiration date, though it’s easy to forget that. It’s easy not tell people we love them, easy to get mired down in the details of tax receipts and chores and minor complaints. I feel very lucky to have had the good breaks that I’ve had – happy to have some family living around me now, a great supportive husband, happy to have my fifth poetry book coming out this year.

If you had told me at thirteen the good and bad things that were coming, I don’t think I would have done anything differently. My body has certainly been an uncertain vessel, from the time I was in my early twenties – thwarting my attempt at a technology management career that perhaps wasn’t my best destiny anyway – keeping my from traveling to some of the places I’d still like to see – though I’ve made it to Paris three times, I’d still like to see England, Ireland, maybe the South Pacific. But mostly I’ve done the things I wanted to do, with the people I wanted to do them with. If I don’t get to accomplish everything else I had planned, well, I still think I’d be happy with what I’ve done.

Hey, maybe this is nothing, another incidental finding, another scare and nothing more. I hope so. In the meantime, maybe I won’t sweat the rejections, the bill paying, the continual grating annoyances of being alive, as much. Maybe I’ll be moved to be braver with my energy, my heart, and my writing. This feels pretty brave, right now – talking about this in public – and hopefully it might help someone else going through something similar, because, isn’t that why we write in the first place?

Elgin Award Nomination, Writing Through Chronic Illness, and Cleaning Up the Blogroll

Elgin Awards
Happy to say The Robot Scientist’s Daughter has been nominated for the SFPA’s Elgin Award. Yay! If you’re in the Science Fiction Poetry Association, just like the political nominees these days, I ask for your vote! (But there are a ton of wonderful nominees there, including Laura Madeline Wiseman, Matthea Harvey, Marge Simon and E Kristin Anderson.)

Blogroll Cleanup
Yes, it’s my once-yearly update of the blogroll, and it’s made me really sad to go delete the names of lots of old friends who have stopped blogging – some not since 2014. I guess with Facebook and Twitter and such, people have stopped blogging, but I still really like it as a way of connecting with other writers (with more than 144 characters at a time!) Call me old-fashioned. Anyway, blogrolls themselves have sort of gone out of fashion, haven’t they? My little brother tells me “no one has those anymore.” If you don’t see your name there anymore and we’re poetry friends and you’re still blogging, let me know in the comments!

Women, Chronic Illness, and the Desire to keep Writing
Some very interesting and touching essays on women writing with chronic and invisible illness, as well as chronic illness and capitalism:

http://www.poetryfoundation.org/harriet/2016/01/tender-theory/

http://www.maskmagazine.com/not-again/struggle/sick-woman-theory

These both make interesting points and both women are admirably strong, great writers and doing good by calling attention to our society’s willingness to ignore or let fall through the cracks people who aren’t whole in some way. I definitely identify with “the girl not meant to survive” – in fact, I just finished writing an essay for the HWA newsletter on just that subject, or rather, the subject of writing the world being a mutant/monster/outsider/etc. But I’m not sure the chronically ill do necessarily fall completely out of the capitalist system – after all, I’ve still been writing to earn money – not as much as I made as a tech manager, but something – through all kinds of crazy chronic and acute illnesses for the last ten or so years. Writing is one of the few ways you can earn money at home in pajamas, whether you feel great or not, sitting at your laptop. I have a handicapped placard in my car – a nod to the fact that I often can’t walk or do stairs and am stuck with a cane or wheelchair – but I have never registered for disability – due to the fact that I eke out enough of a living as a writer/editor to make “too much money” (i.e., in Washington State, $1000 in any one month gets you kicked off, or at least that was the case the last time I checked). No, I don’t like the fact that I can’t travel or do book tours like I could when I was younger and marginally healthier – and hold out the hope I’ll be able to do that stuff again. And no, I don’t write as much or as well when I’m in acute situations – say, in a hospital – but I give myself a pretty strict writing and submitting regime pretty much all the rest of the time. Am I inspired when I’m fatigued and discouraged, frustrated by the endless loops of medical visits/medical tests/new medications? No. Does this bring out the best in me? Again, no. But I fight against the idea that as a chronically ill person, I’m useless. I do require more support than I used to – and I’m thankful for the things that allow me to keep writing: several pretty good doctors, pretty good insurance, and a husband who cooks and cleans and does laundry when I can’t. The basic mechanics of life can be hard to scale when you’re chronically ill, but also when you have children or loved ones who are chronically ill (for instance, writers Daphne du Maurier and L.M. Montgomery both had to support their families with their writing because their husbands, both mentally ill, required constant care), or you have to work two jobs to pay the bills…Life seems easy for some, and harder for others, but everyone, everyone has challenges.

I hope I’m not being unrealistic or overly cheerleader-y, but I hope to maintain a writing career despite the health challenges!

And to end on a cheery note, this terrific “note to self” from sci-fi writer Octavia Butler, an excellent example of willing yourself successful as a writer.

Bram Stoker Prize Preliminary Ballot, Sci-Fi and Poetry, Taxes and January Hibernation, and Two Books Coming Out This Year

Very grateful and happy to announce that The Robot Scientist’s Daughter made the preliminary ballot for the Horror Writers Association’s Bram Stoker Prize (check out the other authors on this ballot – Clive Barker? Guiellermo del Toro? What???) Now to wait for the final ballot vote, which happens February 15! I’ve only been part of the HWA for a year, so this was unexpected! Thanks, Marge Simon (also on the poetry part of the ballot) for encouraging me to join! Like the Science Fiction Poetry Association, the HWA is a group I wish I’d found earlier, writers who love the same things I do. I’m a poet, but the sometimes rarified air of the poetry crowd – who, for instance, don’t watch television at all, never idolized Buffy or had a crush on Mulder – used to make me feel lonely. I feel lucky to now not only have poet friends, but writer friends of all stripes who also self-identify as geeks.

Thinking a lot, as The X-Files returns to television and as I’ve been re-reading beloved books from my childhood, how much science fiction and horror, in book, film, and television serial form, have impacted the work I do as a poet and as a human. I’ve always lived in a world where robot arms and Geiger counters were a normal part of childhood, where fish might glow with radioactive waste, and as an adult, have learned more than I wanted to about the caprices of genetic mutation. So I guess speculative fiction never seemed as speculative to me as it might to some. The worlds of Madeleine L’Engle or Ray Bradbury, The Twilight Zone or yes, The X-Files, seemed closer to my truth than soap operas, police procedurals or romance novels (or, come to think of it, the work of Robert Frost, for example) ever did. This probably explains why I write the books I write. I remember in 2006 hearing that Terri Windling and Ellen Datlow were going to include one of my poems in 2007’s The Year’s Best Fantasy and Horror, thinking, “Is that what I write, after all? Fantasy and horror?” Because up to that time, I’d just thought of myself as a really out-there poet who wrote about comic-book supervillains and fairy-tale curses and science who didn’t really fit in anywhere, I certainly didn’t know that there were more like me out there. Anyway, weirdo-geeky poets, unite, I say!

I’ve been both sick and commanded to stay off my feet as a foot/ankle injury heals, and during that enforced downtime I’ve managed to work on my 2015 taxes (dreary!), work on edits for my PR for Poets book, work on my NEA application, update my CV and Interfolio account and apply for a teaching job, work on essays and sent in the latest draft of my next poetry book for Moon City Press, Field Guide to the End of the World. While staying in is not good for my social life – I missed a couple of friends’ readings – it is good for getting work done.

That’s one thing January in Seattle teaches us – I can pretty much count on catching a couple of viruses (and, historically, at least one weird injury) and it’s not so inviting to go out in bitter cold rain and when it gets dark around 4:45 PM, but the opportunity to stay in, read and write are a given. In the summertime, when the blue skies can last til nine or ten at night and the mountains and trees and water around us look so inviting, it can be harder to create a lot of alone time. Seattle-ites shuck off their sweaters and lattes and basically become more manic (because Seattle-ites know their sunshine is only available for a limited time) Californians for three months, optimistic and outdoorsy. But January is a time for hibernation, wearing nothing but sweaters, yoga pants and rain-appropriate footwear, for computer geeks and for writers alike to get stuff done.

The reality (gulp) of having two books come out in a year – the Two Sylvias non-fiction book first and then my next poetry book in November – is starting to hit me. Have I signed on for too much? It’s a little overwhelming, but I hope I’m up to the task! Hoping the rest of 2016 is a little more cheerful, a little more sickness-and-injury free, but productive nonetheless!