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Zap zooie: midpoint

Today marks the completion of 14 of my 28 planned radiation treatments. I’m half done with this phase of my current learning experience.

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(Blue is radiation, and peach is poison peach pills, aka Xeloda. Percentages are for radiation treatments.)

I’ve been meaning to write up the details for the curious; now seems like a good time. And because of the insurance SNAFU, I’ve gotten to experience the two main kinds of radiation therapy.

Both are in the same room with the same equipment, it’s just how the equipment is used that differs. Either way, I drop trou and lie on the table with my legs in a custom-molded cushion to hold them in just the right place. The techs tug on the sheet covering the table to scoot me this way and that, until my tattoo dots are lined up precisely with the laser lines running along and across my body. The techs flee the room, then take a quick image of my innards. The table position is shifted remotely to make absolutely certain I’m in the right place.

The simpler approach, 3D modeling, used the detailed CT scan they took originally to develop a plan. The x-ray head, an enormous thing that can rotate 360 degrees around the table from its mount at the head, is positioned at three different angles, and from each delivers an approximately five-second burst of x-rays. The beams intersect in the tumor, giving it maximum radiation with as little damage as possible to my innards.

The fancy version, IMRT, instead orbits the head around me, zapping all the way, but finger-like projections are constantly moving to adjust the size and shape of the x-ray beam based on an even more complex 3D model. Science is SO COOL!!! A complete circuit takes about 18-20 seconds, and they do two. I don’t know the beam intensities, but the IMRT provides more time of radiation, and I believe more total dosage as well, while spending even less time over any particular bit of healthy tissue. IMRT is the better of the two because it can deliver more radiation with fewer side effects.

And indeed, the side effects have been fairly minimal. I’m queasy starting about two hours after treatment, and lasting 4-5 hours. So I’ve been eating large nutritious breakfasts. I was on an afternoon schedule for a while, which meant I was feeling poorly from late afternoon through bedtime, but I should be on early mornings for the rest of my treatments, meaning I feel lousy at lunchtime (notice me blogging instead of eating?), but have recovered by late afternoon and can eat a normal dinner. There have been changes in bowel function, but not yet serious diarrhea, and I’m also not experiencing the intense fatigue that radiation can cause (yet?).

The Xeloda, though… I haven’t had the predicted skin problems on hands and feet. I’ve been diligent with moisturizers and not washing the dishes much. Instead, I’ve developed tingling and numbness in my fingers and toes (peripheral neuropathy), which is not usually a Xeloda side effect, though obviously it’s possible. This is tremendously annoying, and runs a risk of becoming permanent if it gets too bad, so I’m now taking Xeloda only on days I receive radiation, rather than seven days a week. This weekend was the first I’d tried that, and the numbness receded somewhat by Sunday evening, a good sign. (Also, numb fingers: if there are typos in this post you don’t need to tell me, because I really don’t care.) I can type, walk, etc, but had trouble trying to warp a loom on Saturday.

So, you know, nifty science and not unbearably difficult so far. This young and healthy thing continues to work in my favor.

Wow, you all!

I’m amazed: I signed up for the Clarion West write-a-thon on a whim to provide motivation for myself. I didn’t expect anyone to actually sponsor me, and yet here you are. 

Thank you! Inordinately! 

 I really do want to write you all stories, but you have to pick the topic. Otherwise I’ll choose something, and it will probably be utterly inappropriate. 

So how’s it going, you might ask, being entitled as a sponsor to investigate my writing progress.

Well, let’s see. My goal is to have a complete outline of Book of Phantoms by the end of the write-a-thon, of at least 5000 words. I have six weeks to do this thing, from June 22 to August 1.

So far: I have worked on the outline every day since June 22. Some days that involved hours of research, brainstorming, and note-taking, while other days contained only a few minutes of jotting. Still, every day.

And the 5000 words? The outline itself is currently 539 words, and I have 1403 words of actual prose that I’m totally counting. Why do I get to count that? I need to write the characters to understand how they react, so that I can do more and more evil but realistic things to them later in the book. So that would be 1942 words, or 39% of my goal, as of July 9 (I haven’t written anything other than science and blog posts yet today), or 42% of the time. So I’m a bit behind, but not too bad. 

Oooh, wait! I’m not behind at all, because I have more outline on the iPad that’s not counted in the total. There might even be the 158 words I need to get caught up.

I also have a LOT of words of character and place descriptions and historical background that will make it into the main text in artfully placed tidbits here and there, but I’d have to sort out my own words from those copied from various sources to count them, and I’m too lazy. Also, I’d rather spend my time writing than 

I have a complete if sketchy outline of the main plot, and am filling in subplots around it while also expanding the main plot. Novels have a lot of chapters. Never is that more obvious than when you’re trying to figure out what each of them should contain.

I’m still totally in love with this book, or at least the idea of this book. (Someone remind me of that when I’m slogging through the middle of the first draft, okay?)

In other writing news, none of the five stories I have out right now has been rejected yet, and one is actually shortlisted for the anthology for which it was written. 

Confluence!

Confluence, to be held in Pittsburgh on July 25-27, is effectively my home con. I’ve only been going for a few years, but I’ve only been going to cons for a few years, since I started actually selling stories (my first was WFC in Columbus in 2010, immediately after I attended Viable Paradise).

Confluence was also the first con that let me participate in programming, and they’ve done so again this year. I think they may be trying to kill me (five consecutive hours on Friday night??!!), but there are some lovely things here, and some that may be… controversial. I’ll be packing my asbestos overcoat.

I’m quite thrilled to be on a panel with friend and neighbor Daryl Gregory, and very excited about the Saturday worldbuilding panel, as that’s a topic I pitched (and a panel I hope to see happen at WFC in Washington DC this fall as well).

I hope to see some of you in Pittsburgh at the end of the month!

Fri 6:00 PM Marshall Is SFWA Still Relevant? Bud Sparhawk (M), Sarah Goslee, Christie Meierz, Denise Verrico

Fri 7:00 PM ??? Kaffee Klatsch Michael Arnzen, Sarah Goslee

Fri 8:00 PM Pine The White Man in SF – A new look at diversity and alternative lifestyles Sarah Goslee, KT Pinto, Tim Liebe, Denise Verrico (M)

Fri 9:00 PM Pine A Pack of Apocalypse – How realistic are end-of-Civilization scenarios Ken Chiacchia (M), Alan Katerinsky, Daryl Gregory, Sarah Goslee

Fri 10:00 PM Marshall Social Networking – Talking about it really Does make it better Eric Beebe, Jacqueline Druga (M), Sarah Goslee

Sat 2:00 PM Pine Foods, fabrics and Fancies – Other worldbuilding Foundations Sarah Goslee (M), Wiliam H Keith, Tamora Pierce, Cindy Lynn Speer

The joys of insurance

Federal BCBS has decided to approve IMRT after all, so I’ll start the fancier (also safer and more effective) radiation treatment tomorrow.

How is this not a terrible waste of everyone’s time, and an unnecessary additional stressor?

The US medical care system is insane, and I say that as someone with good insurance and excellent healthcare.

Clarion write-a-thon and works in progress

I submitted four short stories this morning, for a total of five out: I’m feeling rather proud of myself! That makes only two previous subs that are languishing, and both need some work before they’re ready to face the world again. (I have innumerable stories in progress, of course.)

I’m working on a new novel, science fiction set in 10th century al-Andalus, working title Book of Phantoms. Right now I’m in the research and outlining phase, and have one more major plot point to figure out. SO MUCH FUN!

To provide some external motivation, I signed up for the Clarion West Write-a-thon, a fundraiser for the writing workshop. The write-a-thon runs from June 22 to August 1, and my writing goal is to complete a 5000-word outline for Phantoms. (That’s not a very ambitious goal, but the timespan is almost exactly coincident with chemo-radiation, and I wanted to choose something I could manage.) So far I’ve worked on the outline every day since the write-a-thon began, which is pretty good for me. I’m not normally an every day kind of writer. Here’s to external motivation!

If you sponsor me, I will write you a 150-word short story on the topic of your choice.

#SFWApro

I forgot to mention

I meant to include this in my first post.

This morning when I showed up at 7:45 and the techs didn’t know about the change in treatment plan and the new plan wasn’t ready yet anyway?

Not only were they very apologetic, and smooshed me into the schedule very promptly once the plan was ready, they gave me $20 in Sheetz gift cards (convenience store/gas station with a small and surprisingly good cafe).

I’ve mentioned here before how pleased I’ve been with the medical care I’m getting. That’s true of the folks at the hospital cancer center, as well as all the Geisinger people. The gift cards were a nice gesture of apology for their communications screw-up.

Also, the waiting room has cookies.

Addendum

I just got off the phone with the person at the local hospital who’s dealing with BCBS for me, and with BCBS themselves.

BCBS has no explanation for all the delays, and also doesn’t feel any compulsion to answer their online messages in a timely fashion. I messaged them Monday, and nobody had even looked at the message until the woman I spoke to pulled it up while I was on the phone with her.

However, they’ve “made my case a high priority” and have turned it over to a peer-to-peer discussion panel, which apparently includes my own radonc as well as their doctor. This can take up to three business days, and they didn’t start the process until yesterday (??!!), but because “my case is a high priority” it’s possible they will finish the appeal and discussion process by close of business today.

So it’s possible that I’ll be back to IMRT tomorrow morning, but I’m not holding my breath.

Zap zooie: keeping score

I’ve been reading the recent cancer-treatment-insurance travails of people like Zoe Keating and Eugie Foster, and have been both appalled and glad that my insurance company has been reasonable.

Well, so much for that.

First off, I started radiation a week later than planned, solely because my insurance company took TWO WEEKS to get back to my medical providers. I have federal Blue Cross, by the way, which you’d think would be a good service given the bargaining power of the federal government. Starting a week late means that I’m scheduled for treatments DURING PENNSIC, instead of being done the week before, which makes me more than a bit unhappy. It also pushes back my likely surgery date, making my fall plans less feasible. Thanks, BCBS.

I showed up yesterday afternoon as instructed, having started my scary peach pills that morning. I half-stripped and climbed onto the table. My tattoos were augmented by marker lines covered with clear stickers, images were taken, adjustments were made, I was carefully positioned along laser-marked lines.

The tech came back into the room. “I’m going to lower the table. I’m sorry, but your insurance company has denied IMRT as not medically necessary, although they did authorize regular 3D radiation treatment. The radiation team is making a new plan for you, and they’ll be ready by tomorrow.”

What? My doctors want treatment X because it’s the most effective with the fewest side effects, but my insurance would rather not? At least they’ve approved something, unlike Eugie’s case. The decision is being appealed; the immediate plan is to go with the regular economy-grade radiation treatment, and if FedBCBS relents, to switch over to IMRT.

I discussed all this with both the radiation techs and the nice administrator who’s been dealing with the insurance company for me. (I did contact them to complain about the delay in getting approval, but they never got back to me.) I set up a time for this morning, nice and early (they’re unlikely to be running behind if you show up at 7:45).

So this morning, before coffee even, I was again half-dressed and flat on the table. I mentioned the insurance woes to the new techs, not the ones from yesterday. They… hadn’t heard this, and thought they were doing IMRT as originally planned. So rather than go any farther, they went off to check.

Yep. No change in the insurance status, and the 3D plan wasn’t ready yet, but would be in about an hour. They offered to call me when it was (me being unwilling to wait any longer than absolutely necessary), and so I went out for coffee.

It was just about an hour later, and they managed to squeeze me in shortly after I returned to the hospital. The radiation treatment center is always very busy. This time, ZAP.

Score so far:
Times half-naked on the treatment table: 3.
Actual treatments: 1.
Doses of scary peach pills (Xeloda): 3.
Current side effects: mild queasiness; numb fingertips on my left hand from previous chemo. That will be aggravated by the peach poison, but should fade after I’m done with treatment.

I’ve also lost quite a bit of hair, but it was so thick to start with that you can’t even tell. I need to shave my legs a lot less often now, though.

Zap!

I start chemo-radiation tomorrow. The cancer center at the local hospital uses IMRT (intensity-modulated radiation therapy). Bzzt zap zoom die die die!

First dose of Xeloda tomorrow morning, first dose of radiation in the afternoon. I’m equipped with Zofran, Imodium, and heavy-duty hand cream.

Science is slow

I still haven’t heard from the radiation oncologist about when I’m actually starting treatment. It should be 7-10 days from last Monday, which is, well, any minute now.

I had my pre-chemo blood work done yesterday anyway. I’m a bit anemic and my white blood cells are a tiny bit low, but neither is anything to worry about, and my platelets are lovely. And this? This is the BEST science:

huge drop in CEA

My CEA is down to 42!

Blood counts or no, I continue to feel better and better as I get farther from my last chemo infusion. My brain is working better: though it’s still an incredible slog to get going on anything, once I get some momentum it’s all good. I may even finish this dratted paper that I’ve been poking at for months. And I walked the dog in the morning for the past three days. Happiest dog ever! The lack of regular dog walking was partly fatigue, but hugely cold sensitivity. I hope now that it’s summer and I’m off the oxaliplatin anyway I can keep up the daily walks. I miss my huge amount of walking. (I walked over 1800 miles in 2013. I haven’t tallied up 2014 so far, but my mileage is greatly reduced.) I’ve been cramming in as much kayaking as possible. I even snuck out after work on Tuesday. Lovely! I’m afraid that the new chemo I start with the radiation will affect my hands and prevent me from paddling, so I’m stocking up on kayak time now.