Episode IX: The Rise of Friday
We have a slightly more concrete plan for the coming weeks, with the understanding that plans can change from day to day based on test results, scheduling issues, the whims of the insurance companies, and more.
Amy’s currently going through her third round of R-EPOCH chemotherapy (her fifth or sixth total round of chemo, depending on how you count them.) The goal is to do one more round the first full week in May, then do another CT scan. If she looks cancer-free at that time, we’ll move on to the bone marrow transplant step.
I got choked up the first time the phrase “cancer-free” came up. There’s so much hope and fear wrapped up in those two words, and in the results of that scan a month or so from now. We know she’s responded well to treatment so far, but there’s so much unknown…
We got to spend some good family time together for my birthday weekend, which was nice. I ate way too much, which was also nice 🙂
I’d like to believe the end is in sight, and we’re starting to move toward the next steps of her recovery and rebuilding our new normal. The whole family is pretty damn tired of cancer and chemo and all the rest. This crap gets old pretty quick.
We learned something exciting this week, though. Amy’s been using an infusion pump that delivers her chemo cocktail over the course of 3-4 days. But the tubing has sprung a leak at least three different times, all in the same spot. It looks like the chemotherapy meds are actually eating through the air filter in the line. These are the chemicals they’re pumping into my wife’s body…
Well, if they eat through filters, hopefully they’ll gobble up cancer cells even better.
Let me preface this post by saying, thanks to a clause in the ACA and a significant amount of luck, we’re all right.
The default in the United States is that you’re supposed to get insurance through your employer. The employer picks up some/most/all of the cost, and that coverage is considered one of the benefits of employment.
As you may recall, back in December, my wife was diagnosed with an aggressive stage 4 lymphoma. She spent about six weeks in the hospital, and if everything goes well and the chemo and bone marrow transplant both work, she might be able to go back to work at the end of the summer.
Fortunately, we have relatively good health insurance coverage. According to the benefit statements, her treatment has cost somewhere between half a million and a million dollars so far. We’ve only been responsible for a very tiny fraction of that cost.
Jump to last week, when we got a letter from a benefits management company. Because my wife hadn’t been working since late November, her benefits were being cancelled. The official reason was “reduced work hours.” Our options were to either pay for COBRA coverage to continue on the plan we had, or we could go to the Health Exchange to find a new plan. Either way, we were now responsible for the full cost of our health insurance. In addition, if we chose a new plan, we’d be responsible for any new deductibles.
Here’s where the luck kicks in. Back when I tried to quit my day job a few years back, they created a part-time position for me, one I could do mostly from home. And as a result, I could continue to receive health insurance (but not vision or dental) through that job.
The benefits management letter was telling us our family’s dental and vision insurance were no longer covered by my wife’s company. But we still have health insurance.
COBRA costs to continue dental and vision are about $150 a month for our family. We can handle that. What would have been a lot harder would be paying probably $1000-$2000 per month so we could continue getting health insurance through COBRA.
Think about it.
- You get health insurance through your employer, just like you’re supposed to.
- You get really sick. Fortunately, you have health insurance! Well done, you!
- Because you’re sick, you can’t go to work. A few months later, you lose your health insurance.
- Surprise! Not only are you on reduced income from not working, you’ve got to cover a couple thousand dollars of new expenses every month!
We’ve designed a system that abandons people when they need it the most. Is it any wonder we see hundreds of thousands of families declaring bankruptcy every year because of medical expenses?
If my employer hadn’t really wanted to keep me on – so much that they created a new position for me, and if the ACA hadn’t allowed me to continue receiving health insurance through them, I would currently be A) panicking like a cat in a cucumber field, and B) looking into GoFundMe and other ways of making sure we can continue to afford to keep my wife alive.
That we put people in this position when they’ve done everything “right” in terms of finding a job and working for years for their benefits – hell, the fact that we put anyone in this kind of position, period – is obscene. The whole for-profit approach to health care in this country is literally killing people.
My family is very fortunate in many ways, and we’re all right for now. But as a country, we have got to do better.
Over on Goodreads, someone asked me for advice for people who want to be authors. That’s a pretty broad question, and comes up in one form or another pretty routinely. So I’m gonna break it down into bite-sized chunks and post stuff as I have time and inspiration.
1. Why are you asking me?
I’m not saying you shouldn’t ask me for advice, but why are you? Do you know anything about my career or what I write, or are you taking a shotgun approach and asking anyone and everyone you can find? My advice will be based on my experiences and my goals, which won’t be the same as yours. Recognizing those differences can help you know when to follow — or not follow — my advice.
2. Ask around, but avoid the “Preachers.”
Every author’s career path is different, so it’s good to ask around. Follow other authors online, read their blogs and learn about their experiences. Lots of us are very open about this stuff. But be very careful about anyone who insists they know the One True Path to publishing success. There isn’t one. If someone sounds like they’re on a Crusade, just smile and nod and back away.
3. It’s okay to write crap.
In the early part of my career, perfectionism was killing my productivity. Very few authors can produce publishable first drafts. I had to shut off the editor brain and just write. Once I had something on the page, I could go back and make it better, but you can’t revise a blank page. And if you spend all your time trying to make the first page perfect, you’ll never write page two.
4. Stock up on patience.
One way or another, writing and publishing tend to be slow. DAW published Goblin Quest more than five years after I’d finished writing it. Finding an agent was a multi-year endeavor. And the writing itself…some of these books take me more than a year to write. Being a writer is a long-term thing, not an overnight transformation.
5. What are your goals?
Do you want to see your book in bookstores? Do you want to write one book or many? Do you want to make a living at this? Do you want to write fanfiction or tie-in fiction or original stuff or all of the above? What’s driving you to write in the first place? Figuring out exactly what you want will help you figure out how to get there.
6. Read in your genre.
Read older stuff so you know what’s been done and how the genre has changed. Equally or more important: read new stuff so you know what’s being done today. Hint: publishers aren’t buying the same stuff they were buying fifty years ago, or even ten years ago.
7. Read outside of your genre.
I’ve found this to be a great way of learning new techniques and tricks for compelling storytelling. Read poetry to learn about word choice and imagery and rhythm. Read romance to learn about writing engaging relationship conflicts and resolution. Read comedy to learn humor. Read scripts to study dialogue.
This is the big one. If you want to be a writer, write. Get some words on the page, good or bad, and then write some more. Write what excites you. Write what makes you laugh or cry. Write what knots your guts up with fear. Write gorgeously. Write crap. Write your stories.
I got to meet and hang out with author Fonda Lee at the Launch Pad Astronomy Workshop a few years back. Recently, Lee was at Barnes and Noble and observed:
“This is what modern fantasy writers are up against. In my local B&N, most authors are lucky to find a copy of their book, super lucky if it’s face out. There are 3.5 shelves for Tolkien. 1.5 for Jordan. Here’s who we compete against for shelf space: not each other, but dead guys.” (Source)
Her Tweets got a lot of attention, leading to an article by John Trent at Bounding Into Comics that derides Lee and accuses her, among other things, of criticizing Tolkien. Not that Lee ever did this. Her second Tweet in that thread said, “Before you @ me about the importance of classics, I love LOTR too, okay?” One might almost suspect Trent’s comment, “Lee isn’t the first person to criticize Tolkien,” of being an attempt to stir up shit.
An effective attempt, it seems. Lee has been barraged by Tolkien Defenders over on Twitter.
Trent opens his article with the claim, “Science Fiction and Fantasy author Fonda Lee, the writer of the Green Bone Saga, decried Barnes & Noble for stocking popular fantasy authors J.R.R. Tolkien and Robert Jordan.”
Nowhere does Lee say B&N shouldn’t stock Tolkien and Jordan. She’s complaining that these two authors get 4-6 shelves in the B&N SF/F section, which means other authors are left with little or no space at all.
Back to Trent:
“Fonda then explains the business that Barnes & Noble is in. She describes it as as ‘a place of discovery.'”
Lee’s actual Tweet:
“If you think a bookstore should be a place of discovery, who goes into B&N and ‘discovers’ Tolkien? Do they figure people want another 5 copies of LOTR and aren’t interested in all the other work out there?”
Lee isn’t booksplaining the business Barnes & Noble is in. She’s talking about one aspect of bookstores — discoverability. Nowhere does she say that’s the sole purpose of B&N.
And she’s not wrong. For readers looking to discover new books and new authors, 4-6 shelves of two dead fantasy authors is a hindrance. It also makes things harder for other authors trying to get their own work out there.
All in all, Trent’s article seems less about accurate reporting and more about distorting someone’s comments to sic the trolls on her and stir up a game of, “Let’s you and her fight.”
Numerous commenters are happy to take his bait, attacking Lee as an author, claiming she doesn’t write well and she should try “not to suck.”
Let’s see here… Fonda Lee won the World Fantasy Award, the Aurora Award (twice), had her work named a Best Book of 2017 by NPR, SyFy Wire, and — oh yes — Barnes & Noble. She’s been a finalist for the Andre Norton Award, the Nebula Award, and the Oregon Book Award. She won the Oregon Spirit Book Award, and was a YALSA Top Ten Quick Pick for Reluctant YA Readers.
Reader, I wish my writing could “suck” as well as Lee’s!
Now, there is a valid point buried in the article and comments. Bookstores are a business, just like publishers and all the rest. Their goal is to make money, and that means stocking books they believe will sell the best. Tolkien and Jordan sell a lot of books.
But there’s also some chicken-and-egg logic to untangle here. All other factors being equal, an author with a three-shelf display is going to sell a hell of a lot better than an author with one or two books squeezed spine-out on the shelf. Bookstores and publishers choose which books to promote, which books to put face-out, which books to put on table or end cap displays, and so on. All those things help to sell books.
Writing a good book helps a lot too, but let’s not pretend that’s the only factor in a book’s commercial success.
The emphasis on these books also sends a message about what kind of customer B&N is targeting. Lee notes that her store had:
- 18 copies of Lord of the Rings
- Only 1 copy of the Nebula- and Hugo-award winning The Fifth Season
- Only 1 copy of Lee’s own World Fantasy Award-winning Jade City
Three titles isn’t enough to make any statistically sound conclusions. But this doesn’t suggest that B&N is interested in a broader, more diverse range of customers, or that they want customers who are looking to discover newer, exciting authors. It feels like “more of the same” marketing. “If you liked this dead white guy’s fiction, you might also like this other dead white guy’s fiction.”
Barnes & Noble knows books by Tolkien and Jordan are reliable sellers. They’re safe.
It’s a choice. B&N has the right to make whatever choice they want about who to feature and how to fill their shelves. Lee’s comments simply point out that this choice hurts discoverability for both authors and readers. She also thanks independent bookstores, which are often more willing to take risks, to customize their selection for their local readers, and to focus on more than just the safe same-old.
I wonder if that’s one of the reasons for the resurgence in independent bookstores…
In the meantime, Lee’s book Jade City has been sitting in my TBR pile for a while. I may need to bump it to the top.
Not too much to report, actually. Which in some ways is probably a good thing.
The Storytime idea I brought up last week is still evolving into its final form. I have an idea for it that I really like, but I need to clear a couple of things with my agent first. This may or may not work out, but I’ll keep folks informed one way or another.
Over in Cancerland, my wife completed another round of chemo. She’s got a minimum of 2-3 more to come, and possibly as many as 5, before we head back to Detroit for the bone marrow transplant. This last round came with the traditional nausea and weakness, but after a week and a half of recovery, she’s doing pretty well again. (Just in time to go back in on Monday to start it all over again.)
In the midst of all this fear and uncertainty and wishing cancer would just go back to hell, I’ve also noticed how much closer Amy and I have been these past few months. No relationship is perfect, and ours has had its speed bumps and potholes. Cancer has a way of shaking everything up and recalibrating your priorities. There’s a lot more appreciation and gratitude and tenderness.
There’s also the simple fact that we get to spend more time together. Take yesterday – I took her in for a blood transfusion, which was supposed to start at 9 in the morning. Thanks to the lab mislabeling one of her blood tests, it didn’t actually start until past noon, and we didn’t get out of there until about 5 or so.
Which meant, essentially, we got to spend a day together just hanging out. A hospital room isn’t much fun, but we watched a bit of TV, read some of A Wind in the Door, went for a couple of walks around the unit, and just got to be together. I can’t remember the last time we were able to do something like that back when we were both working and running all over trying to keep up with everything.
If all goes well, we’ll be going out as a family for a belated birthday dinner for my son, and maybe even sneaking away again to see Captain Marvel before Amy starts back up with chemo. It’ll be nice to have a couple days of relative normalcy.