Speechless Again

My mother’s PET scan and new CT scan got read this morning, and her tumor is gone. Gone as in missing, not there, as in no one knows what happened.

To recap, there was a baseball-sized mass behind her sternum in November that showed up as a shadow on an x-ray and then very clearly on a CT scan. It was still there at the end of December. During the biopsy, the surgeon found it wrapped around her blood vessels and diagnosed (for the second time) invasive inoperable thymoma, which is a form and type of thyroid cancer that kills more than 85% of patients within the first couple of years after diagnosis, often quite quickly.

The pathologist’s report from the biopsy conflicted with the unequivocal clinical diagnosis, so the biopsy went to specialist lab in Texas, and they couldn’t find cancer cells. The surgeon continued to tell my mother and her husband not to trust the pathology, that it was wrong and offering false hope. The insurance company finally approved a PET scan (though they, of course, reserve the right to decide not to pay for it after all, because we live in the US and that’s how they do) to find out what the mass was really made of.

And it’s gone. She has residual inflammation, and of course she’s still healing from the biopsy—the incision goes all the way around one side of her torso, from front to back.

This feels as dreamlike as the initial diagnosis. Both scans agree, though, PET and CT.

Words don’t cover this relief, “grateful” doesn’t describe how this feels. My mother is…I have not, in these weeks and months of corrosive uncertainty, been able to imagine my life without her.

How can I say what it means that my children will probably know their grandmother?

Since this began, I have learned about so many of your losses: how many of you have been through this or something like it, or are going through it now, and you have been so generous with your love and good wishes. All I can say now is thank you for your help. I wanted to tell you as soon as I got confirmation, even though I’m not sure how to say it. I feel like we just walked away from a plane crash and the plane is still on fire and other people are still on the plane and I can’t hear very well.

Research Oddments

It’s been a busy weekend at Blissbat Central.

Over at the Hope Mirrlees site, there’s a mini-essay on connections between Mirrlees’ novel Madeleine and the 17th century French salon-goers and fairy tale writers called the précieuses. There’s also a list of great critical entry points for potential readers of Lud-in-the-Mist, Mirrlees’ most famous novel. As I collected and sorted material for those posts, I wound up with more interesting material than the posts could accommodate, so here are a couple of my favorite oddments for your Sunday afternoon.

La Carte du Tendre

Mlle de Scudéry, one of the most famous of the précieuses, wrote a novel, Clélie, that included an engraved map called the “Carte du Tendre,” a map of Arcadia in which the geography represents aspects of courtly lovemaking: the Dangerous Sea, the Lake of Indifference, and the River of Inclination, on whose banks lie towns including Attentiveness, Tenderness, and Constant Friendship. The wonderful Strange Maps blog has a great breakdown of the map’s fantastic narrative of love.

An engraved map

La Carte du Tendre

Natalie Barney

There’s an excerpt on YouTube from Greta Schiller’s 1995 (not 2004, as it’s marked) documentary, Paris Was A Woman. The excerpt focuses on the life of the dashing American writer Natalie Barney and her many affairs with interesting women. Wonderful stuff, despite its rather mannered documentary style. (New York Times review of the film.)

The Other Thing

I’ve also just finished the arduous part of a secret project. Now I just need to do some spiffing-up and send a couple of emails, after which I should be able to show it to you.

Persian Poetry

Back in 2000, I made a mini-website to host and compare a handful of translations of poems by Rumi and Omar Khayyam. The purpose of the site was to make available samples of alternatives to the sappy, New Age Rumi “translations” by Coleman Barks (who doesn’t even read Farsi), to offer a comparison of Khayyam translations, and to give my new boyfriend something fun to look at between coding jags.

After a couple of years, I put the whole site hosted at Blissbat.net on ice, and I had assumed that the Persian material would have fallen off the internet by now. Turns out, not so much. I recently discovered by accident that my Persian poetry pages were on the first page of Google’s results for “Persian poetry,” and that they were still getting quite a bit of traffic—more than they ever got in 2000, certainly. I took a look at the files themselves and was a bit chagrined to see tables used for layout (though CSS for type control) and various other technical sins, but that’s how we had to do it in 2000.

My tastes have changed in the last ten years, and I’m more interested in Donne than Rumi these days, so I’m not likely to spend the time required to fully update the pages now (though I did go in and bump up the type size a little so I could actually see the words). Were I to build such a site now, I would certainly:

  1. Use CSS for layout
  2. Build it on WordPress to ease updates
  3. Take a more academic approach to the texts and supplementary material
  4. Consider illustrating them with something a little less rooted in the tradition of European fairytale Orientalism than Dulac’s paintings, glorious though they are—although it’s probably appropriate to put Dulac and Fitzgerald together, given their culturally similar starting-points.

…but you know, the text is there. And as far as Google and its users are concerned, that seems to be what matters.

It was a different web in 2000—a mostly pre-Wikipedia web, even—and for all its faults, it made available a lot of hand-rolled and often useful content. So I’m going to leave the pages up, be glad that modern browsers are as forgiving as they are, and get on with the business of making new things that will look just as funny in 2019 as the Rumi stuff looks to me now.

It’s not that the medium doesn’t matter. I wouldn’t have worked at A List Apart for ten years if I didn’t believe it did. But the message (still) matters more.

This Week in Reading and Making

My brain has finally started to return to its normal shape after the deeply unpleasant overwork of the six months leading up to the holiday break. As a result, things have been cooking in the books-and-projects category. Over on the Hope Mirrlees site, there’s now the full text of Madeleine: One of Love’s Jansenists, as well as the first chapter of Lud-in-the-Mist and some great scans from Paris and Lud.

These additions mark the beginning of what will, I hope, be a productive period for the site—I’ll be adding a lot of small things over the next few months, mainly in the form of research details and bits of analysis, as this is the term in which I intend to complete my MA thesis on Lud. The first bit of prep to do on that front is to break down my reading list: I wrote a prospectus and giant bibliography (for my program, at least) in my first term at Queens, but I need to revisit it and to begin the process of loading the books I read that semester back into my useful mid-term memory. (Note to self: flowers and candy for the Interlibrary Loan Office.)

I’ve also just finished my first few days of slushing for Strange Horizons, and I took advantage of the break and the brain renewal to get ahead on my reading there: I think I got through about thirty stories in the last few days, many of which were good and two or three of which were exceptionally fine.

And the other reading, in mini-review form:

  • Gene Wolfe’s bleak, beautiful “Forlesen” in his The Book of Days, which I’m reading in single-story sips instead of gulping it up as I usually do with story collections. Wolfe’s been one of my favorite writers for years—no one but no one else does that half-submerged, spare, rich-yet-hollow, entirely numinous thing that he does—and I’m really enjoying settling into his short stories in an orderly way. “Forlesen,” by the way, is a Middle English word meaning to lose completely or to abandon, from whence we’ve inherited “forlorn.” Here’s some Clute on Wolfe; go soak your brain.
  • Cherie Priest’s Boneshaker, which I’m halfway through, and which is doofy in the way that most steampunk books are doofy. It’s also highly entertaining and also has that unusual quality of being simultaneously emotionally nailed-down (rooted?) and ambivalent that most of Priest’s work has.
  • The first trade of Chew, a comic book about a “cibopathic” FDA operative/special crimes investigator who gets psychic impressions from anything he eats. Extrapolate from that premise a bit and you’ll see what that could have been revolting, but even given my recent experience with the flu, I found it completely charming. It’s drawn by Rob Guillory and written by John Layman, and and I’m looking forward to their next batch.

Cover of Chew

Three Vassar Girls Abroad

The cover (paper over boards) of Three Vassar Girls Abroad

Watch out for the one on the right

While I was doing research for a seminar paper a few weeks ago, I came across an 1880s girls’ fiction series that depicts the adventures of “three Vassar girls” as they explore the intellectual delights of Europe, South America, and beyond. I’ve only just begun the first book, Three Vassar Girls Abroad, and it’s just the sort of thing I’d have hoovered up when I was nine or ten: meandering, detailed, plotless, and shamelessly packed with vicarious experience. It’s not a book suited to modern pacing or, presumably, modern children; it’s meant to be read with cookies in bed by lamplight or on a blanket on the grass in a park with a basket of apples and cheese.

I did my undergrad degree at Vassar and have always been attached to its history as a women’s college, so I was sucked in by the title (and the beautiful cover art), but the text itself is worth a look if you’re remotely interested in Victorian children’s fiction. I’ve been cackling throughout at gems like this bit of dialogue, which appears after one of the girls is pestered by a Frenchman:

“I think you managed him very nicely. I suppose he thought all American girls were like Daisy Miller, and had never heard the proverb, — There are two kinds of girls, girls who flirt, and girls who go to Vassar College.”

Indeed.

The most striking thing about the book so far is the matter-of-fact attitude it brings to its central assumption, which is that it’s perfectly appropriate for a trio of unmarried young women to traipse around Europe solely for their own amusement and edification, rather than to catch the eye of a potential husband or to put a Continental polish on their womanly achievements. Their inconstant chaperone annoys them not because she’s interfering with flirtations, but because she’s frivolous and tends to distract them from the good stuff, which includes art, architecture, and scenery as well as a bit of fashion. The notion that such young women existed wasn’t new in the 1880s, but I’m not familiar with many other period depictions of well educated girls getting to do exactly as they please on an international tour.

The books—there are eleven—were written by Elizabeth Williams Champney (another bio and a photo) and published between 1883 and 1892, and they’re all available in full, illustrated text at Google Books.

Strange Horizons Ahoy

Arecibo's Radio Telescope

To my great delight, the lovely folks at Strange Horizons have brought me on as a first reader for their very fine magazine. I’ve been reading the magazine on and off for years, and I’m really looking forward to the first batch of story submissions, which drops January 1.

Slush reading is one of those tasks that I think all new editors should do for a year or so (I did it for years and years over at A List Apart) because it teaches you so much about the shape of the work, and about common design patterns and tropes.

When you’re reading slush, the thing that keeps you going through stacks and stacks of stories you can’t use is the flare of recognition that lights up in your brain when you find something wonderful. I tend to think that the senses you sharpen by reading slush are some of those you use most often in actual editing. I’m tickled pink(er) to have the chance to do it for Strange Horizons.

Here are some of my favorite stories published at Strange Horizons in 2009, as an introduction to those of you who haven’t been reading it all along:

Zoot the Cat and His Miracle Kidneys of Power

I’ve been meaning to write this up for quite awhile as another data point for people whose cats are sick, and I’m sure that my desire to concentrate on our veterinary success story while we’re waiting (and waiting) to find out my mother’s cancer prognosis is a pretty obvious case of transference, but it’s good to think about things that work, sometimes.

In the summer of 2004, we adopted a second cat from the Multnomah County Humane Society in Portland to keep  company with Zoot, our highly sociable four-year-old bachelor cat. Oyster came home from the pound with an upper respiratory infection that required emergency care, and despite our best attempt at quarantine, Zoot picked it up and  became so ill that we had to feed him with a syringe of paté-style canned food for almost a month.

Zoot does not like paté

Zoot does not like paté

It’s not quite clear what happened next, medically, but shortly after Zoot began eating on his own again, he ended up back in the kitty hospital with acute renal failure. Several months and a few more episodes later, we got the bad news: his kidney function was down to less than 25% (Stage III, if you want to keep track), and the loss of function was permanent. Chronic renal failure in cats is degenerative and fatal, and the survival of a cat with Stage III test results is usually measured in months rather than years. Our vet recommended a prescription diet (which he wouldn’t eat, natch), a short course of steroids, and IV + hospitalization if/when he “crashed,” which he did twice more over the next six months.

So I went to the internet, found a lot of sad stories and some gently optimistic advice, cried a lot, and began working out a much more active plan of treatment in consultation with a new vet who was equally good and closer to home.

Zoot and Oyster are comfyFive years later, after bouts of obvious illness, a lot of wrangling over food rejection, and many boxes of medical supplies later, Zoot is stable, eating like a champ, and just got back bloodwork that is officially Stage II, one step back from the Stage III and IV numbers that had characterized his first few years with the disease. Our vet in Portland used the word “miraculous”; our new vet in NYC paused for a long moment on the phone and pronounced the numbers “very, very good news.” Every time I pick him up and feel meat on his bones, my heart does a dopey little tap-dance.

Mostly, we’ve gotten incredibly lucky. Zoot was deathly ill several times, and there’s no way to know why the disease has been so slow to progress. That said, it’s pretty clear that some of the things we’ve done have made a big difference, which is why I’m documenting this now. We won’t always have him, but five years is an extraordinary gift.

What We’ve Learned

If you have a cat who’s been diagnosed with CRF and you somehow wound up here first, which is unlikely, start with Tanya’s Chronic Renal Failure Information Centre, and the Feline Chronic Renal Failure Information Center. They both have an enormous amount of information and offer good entry points for people who are new to the disease. (One personal recommendation: skip the stories about cats who didn’t make it. You can always read them later, but for now they’ll distract you from your mission, which is to help your cat.)

  • The mantra of the online feline CRF research and support community is “Treat the cat, not the numbers.” They’re right.
  • Cats telegraph all sorts of things if they’re socialized and you’re attentive. Extra hunching = extra antacid for a few days; dampened appetite means food rotation, extra antacid and dehydration checks. You can’t stay ahead of everything, and the disease progresses unpredictably and despite wonderful care, but some things you can help.
  • Subcutaneous hydration is not often recommended by vets, but it seems to dramatically improve quality of life and, in some cases, extend it. This is, I think, the most critical part of our treatment, and we’ve gradually gone from 100ccs of fluid once or twice a week four years ago to 200ccs every other day.
  • The prescription diet is important, but it won’t help if the cat is starving. CRF cats go off their food all the time; my theory is that the spells of nausea and vomiting produce the same revulsion response to food in cats as it does in humans. Rotating in healthy (and even less-healthy) canned foods when Zoot goes off the prescription food has kept his weight up, and the heavier he is, the better his overall health seems to be.
  • Pepcid A/C, regular strength, is the only actual drug we use. We’ve tried some vitamin and herbal supplements that didn’t seem to help him feel any better or move his numbers, and most of them decreased his appetite, so away they went.
  • Most vets are quite good. Great vets are rarer, but worth finding. Some vets will over-test, over-supplement, and over-treat CRF cats while attempting to scare owners into extra treatments. These people suck. For us, doing less at the vet’s has been really important:  no vaccinations (he’s an indoor cat), bloodwork only twice a year unless he worsens rapidly, and more treatment at home (sub-Q) have produced a healthier cat.
  • Practical stuff really matters, if you’re fortunate enough to have a cat stabilize for long-term treatment. Finding the right needles, the right venoset, good suppliers for everything, a good setup for hydration, and a great cat-sitter who can do hydration when we’re away has made a big difference in how long-term treatment has affected our stress levels and financial situation. Calm, happy people make cats calmer and happier too.

The Specifics

Here’s what we use:

  • Prescription food: Hills K/D dry and Royal Canin LP pouches wet. No kibble would be better, since dry food encourages dehydration, but kibble keeps Zoot’s weight much more stable, and that in turn seems to help him feel better overall. We get both from Southern Agriculture.
  • Ringer’s solution and Bauer venosets from Thriving Pets. Nice people, superfast shipping. They accept emailed scans of prescriptions, too, so you don’t have to find a fax machine.
  • Terumo 20-gauge needles. These are famous in the CRF world for an excellent reason, which is that they kick the ass of everything else—they’re wickedly sharp and the 20-gauge runs as fast as 18-gauge (much larger) needles from other manufacturers. We get boxes of 100 by calling Farris Labs (800-537-0411), because their shopping cart is always down. I like them too much to switch now, and I get my sharps containers from them as well.
  • Pepcid A/C regular strength, 1/4 pill per day. If he’s queasy, I bump him up to twice a day for a week or so and then back down.

In the end, it’s about keeping everybody warm, hydrated, chill, and fed. Good luck to all humans and kitties.

Zoot in repose

Warm, hydrated, chill, and snoozing

Family update

My mom got to have Christmas at home after spending three days in the ICU. Lab results from the biopsy conflicted with the surgeon’s diagnosis of thymoma, so a specialist team from an oncology lab looked at the results, but we don’t know their findings yet. Tomorrow, she sees her oncologist proper for the first time to get the combined results, try to understand the prognosis, and start the decision-making process re: treatment.

She still sounds great, though the physical recovery from the surgery has been very hard. Theoretically we’ll have a firm(er) diagnosis this week, and will thus be able to start making plans for treatment, travel, and all that.

About five years back, Peter and I started taking two weeks off at Christmas, with nothing scheduled in the days between Christmas Eve and New Year’s. It’s never felt more important than it does this year. I hope your holidays were and are and will be full of good things.

Then You Get a Biopsy

This post is personal—as personal as it gets. For the next weeks and months, I will be writing periodically about my mother’s experience with a cancer diagnosis. I won’t be going into a lot of medical detail, but I certainly understand if most of you—colleagues, friends, family members, and strangers—want to skip this stuff. We’re cool.

My mother’s biopsy was yesterday. A routine one-hour procedure turned into a rough five-hour surgery followed by time in the ICU. I spoke with her this morning for the first time since she went in, and she’s her fabulous self, but she sounds like she’s been hit by a truck. My stepdad is the best guy in the world for the job of holding everything together and keeping on top of the perpetually delayed pain medication. I couldn’t be more grateful to him.

The diagnosis came in last night, and it’s quite bad, apparently: thymoma (that’s a tumor that began in the thyroid) that is invasive, malignant, and inoperable—inoperable because it’s wrapped around major blood vessels. Since surgical removal is the treatment of choice for this type of cancer (and bumps ten-year survival rates from 12% to almost 50%), the inoperable part is the worst of the bad news, though we’d had a warning of that part after the very first scan. Once she’s out of hospital, I’ll want additional opinions, since the literature suggests that radiation treatment can sometimes shrink these tumors enough to make them operable.

In the interim, my mother’s New-Agey-yet-has-an-MD doctor seems to have brought her around to the possibility of conventional medical treatments, which is a huge step. I’m a science-and-logic kinda girl, and it was quite difficult for me to hear Mom’s first reaction to the initial diagnosis three weeks ago, which was a complete refusal of conventional medical treatment. But what she needs from me is complete support of her choices and beliefs; if I can provide that, I can be a useful part of her support team, whereas if I were to lobby aggressively for conventional treatment, I’d only add stress and push her further from those options. It’s hard, but it’s the right thing. (I’m no fan of chemo and radiation therapy—we’re obviously still talking wigs and leeches here—but it’s what we have, and her holistic physician has suggested some adjunct treatments to ease the effects on the body of these scorched-earth options.)

Through all of this stuff, my mother demonstrates an extraordinary sense of calm and optimism that I’ve only associated with people who’ve spent years in intensive, contemplative spiritual practice. And it wasn’t always like this. My mother was wrenchingly unhappy for much of my childhood, and the changes I’ve seen in her approach to life in the last 15 years or so are nothing short of awe-inspiring. Years of meditation and woo-inflected but CBT-style emotional re-tuning have transformed her experience of the world, and her sense of humor, her love for others, and her powerful long-term optimism have completely overtaken the bouts of rage and depression and misanthropy that haunted her for so many years.

I cannot think of anyone better emotionally prepared to deal with this than my mother. All I can do is try to let go of the grief and worry so that I can support her and honor her example. So that’s what I’m working on now. Thanks times a bejillion to all of you who have sent messages of love and support. I don’t entirely understand why it helps, but it really does.

In the Midst of Life

When I was a kid, my mother built a barn, trained quarter horses, maintained miles of fence, and did all the other countless things required for the maintenance of a working farm. She’s in her late sixties now, and is still managing major home renovations, raising border collies, and running a business with five employees.

Three days before Thanksgiving, I got word from my stepfather that she was in the hospital with chest pains, and was being checked out to see if she’d had a heart attack. She hadn’t; her heart is in great condition. What she does have  is a shadow on the chest x-ray and a diagnosis of cancer. The hospital scheduled her for a biopsy first thing Wednesday morning, with plans to begin treatment immediately.

My mother, however, isn’t easily pushed around. It took a day of wrangling, but she walked out of the hospital Tuesday night to spend the holiday at home. There will eventually be a biopsy, but first, she’s going to try to build up her immune system and get second and third opinions.

When we left New York on Tuesday, we didn’t know if we’d be flying back Monday as we’d planned months ago, or if I’d be staying for days or weeks. She seems almost normal today, and even though I know that’s not the case, based on her apparent condition and the formidable medical team (orthodox and otherwise) that she’s assembling, I am hopeful–that her pain will be manageable, that her extraordinary bravery and optimism will help her through the coming struggles, and above all, that she and her doctors will find a way to restore her health.

I can’t even guess at the shape of our lives in the next weeks and months and years. Of course, that’s always true–it’s just more obvious now. Flailing and grieving will only subtract from the time I have with my mother and the rest of my family, so I’m going to do everything I can to follow my mom’s example and keep myself focused and in the moment.

I generally tend to keep personal stuff relatively quiet, but I’m already finding it difficult to talk about the situation and keep people updated individually, so I’ll be updating here. Love to peeps everywhere. We’re all going to be OK.