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Radiation and Chemo, Weeks 4-5

The passage of time has become very strange for me. The days seem to drag by, but the weeks just zip past. I really can’t believe that two weeks have passed since my last update, and that only one more week of radiation and chemotherapy remains.

We have already finished up the main course of radiation, which irradiates a softball-sized area around the (removed) tumor, and entered the final “boost” phase which focuses on the area of the tumor. The last treatment is on February 2 — Groundhog Day! — and after that there will be no more radiation. Daily chemo ends on January 31, then after a month off will resume with a one-week-on, three-weeks-off cycle for about 6 months. That second round of chemo is supposed to be more tolerable than this initial, aggressive round of chemo and radiation, and we hope to be able to travel and otherwise resume something resembling normal life. If nothing else, the absence of daily radiation appointments will be a great relief.

Medically speaking, for Kate the last two weeks have been similar to the previous three. Her speech and motor issues are very much improved, to the extent that she now seems to have few problems speaking most of the time (though she says it’s harder than it looks). We have begun scaling the steroid dose back down, with a target of getting it down to zero for the coming month off of treatment. Side effects are somewhat worse, though — she is quite fatigued now, taking several naps per day and not able to walk more than a few blocks at a time. We are trying to get up and out every day, though, and the fatigue is not nearly as bad as what we’ve seen in friends taking intravenous chemo.

For myself, it’s been increasingly difficult. With our friends’ help I’m keeping up with everything that has to be done, but I’m tired and achy and often very sad. I’m also having some gut issues, about which the less said the better. I am working with a counselor and doing everything I can to relax, including yoga, guided visualization, and as much walking as I can manage. I have asked for, and am receiving, help from friends to get out of the house when I can. I believe that my stress levels will improve once we are done with this round of treatment, with its daily hospital visits and many pills which must be carefully managed.

We have had house guests nearly every day in the last two weeks. Janna cooked us a brisket, Mary Robinette made three pies, Allan helped us buy a recliner, Sue made sure I got to the gym, Brenda washed the kitchen floor, and all of them did much else besides. Each of them brings a special set of skills and energy and all are very much appreciated. This is in addition to the many local and non-local friends who provided transportation; helped me get out of the house to write, do yoga, or see a movie; sent or brought food; or just came by to hang out. We are so grateful to you all.

We had hoped to be able to attend Potlatch, but at this point this seems unwise due to the fact that some of the drugs make Kate more vulnerable to infections. Alas. On the brighter side, my story “Damage” was published at tor.com and is getting a lot of buzz and rave reviews. You can read it here: http://www.tor.com/damage-david-levine

Thank you very much for your love and support. With your help, we will get through this.

Announcing “Damage” on tor.com, “Homegrown Tomatoes” at Escape Pod

I am extremely pleased to announce the publication of my story “Damage” at tor.com. In addition to being free to read at http://www.tor.com/stories/2015/01/damage-david-levine, the story is also available as an ebook for 99¢ at all the major ebook stores.

I am also pleased to announce the podcast at Escape Pod of “Homegrown Tomatoes” by Lara Elena Donnelly, which I narrated. You can hear it, or download it as an MP3, for free here: http://escapepod.org/2015/01/10/ep475-homegrown-tomatoes/.

About “Homegrown Tomatoes,” reviewer K. Tempest Bradford at io9 said: “Not only do I dig this story, David Levine is an excellent narrator. If you haven’t heard him read his own stuff you’re really missing out — he’s amazing. And he’s just as good with someone else’s fiction.”

Radiation and Chemo, Week 3

We’ve just finished the third week of Kate’s radiation and chemotherapy — halfway done with this round of treatment. In some ways this is like Clarion: six weeks long, really intense, and transformative in ways that can’t be predicted.

Medically this week has been not unlike the previous two. Side effects are more noticeable, but still generally manageable — though there have been a few unpleasant surprises. We are continuing with the increased steroid dosage and Kate’s speech and motor issues are much improved from early last week. We had our six-week followup visit with the neurosurgeon and everything is fine there: the incision is healing nicely, and the bruising is almost completely gone except for one patch on the arm, which is fading. We won’t see him again unless there is recurrence (which is, unfortunately, a strong possibility with this type of tumor — that’s what the radiation and chemo are trying to prevent). We met again with the speech therapist, who gave us some interesting associational techniques to find a missing word — and suggested playing Password as a form of practice!

Emotionally, it’s been… well, it’s been kind of rough for me, especially in the latter part of the week. But after a Saturday reading comic books, ten hours of sleep, and a long nap I feel much better both physically and emotionally. I will try to take better care of myself going forward. I’m also trying to live in the moment and appreciate the good things in life (and there are good things, even now) rather than dwelling on the unknown future.

Our friends continue very generous. I was fortunate to have people in the house at some of my worst times to provide hugs and practical support. Janna spent the weekend here, Mary Robinette is coming tomorrow for an extended visit, and Allan will arrive just as she is departing, with more to come later in January and February. Having people in the house is incredibly helpful for both practical and emotional support and I am more thankful to them than I can express. I am also very grateful to Brian and Page who are providing Kate rides to radiation treatments.

The new freezer is already nearly full of delicious foods — “a freezer full of love” — though there is still room for more. We have already received a lot of soups, especially chili, so if you would like to bring or send something we’d appreciate food we can chew. :-) We need foods that are high in protein, fiber, and vitamins and low in salt.

If you would like to stop in for a visit you’d be welcome; just email or text in advance to find out when we are home. Also, if you are in a position to do shopping, dishes, laundry, or other chores, please do mention it! These trivial little tasks make a great deal of difference.

Thank you so much for all of your cards, letters, emails, comments, and packages of love and support. They are very much appreciated. We’ll get by with a little help from our friends.

Annual awards eligibility post

Prompted by John Scalzi’s annual awards awareness post, here are my award-eligible publications in 2014:

Thanks for your consideration!

Radiation and chemo, week 2

We are coming to the end of the second week of Kate’s daily radiation and chemo treatments. Side effects continue to be slight, though the fatigue we’ve been warned about is, I think, beginnning to make its presence felt. Aphasia and other problems, including some right-side weakness, continue with varying severity, but we’ve raised the steroid dosage again and it is helping a lot.

I think I need to clarify what exactly I mean by “aphasia.” Kate can still speak, and can hold up her end of a conversation reasonably well (with some amusing lapses). But certain words are difficult for her to find; they come out wrong or don’t come out at all. Recent problem words: spell check, traffic cone, snow peas. The thing the problem words seem have in common is that they are the ones that carry the most information in the sentence, the ones that are the least predictable from previous information. “What time is it?” or “Please pass the salt,” no problem. But “I’m having trouble with the –” or “Have you seen my –?” Linguistically speaking, Kate needs a cane, or a walker, not a wheelchair.

We had a good New Year celebration. New Year’s Eve was very quiet — we watched TV and went to sleep early — but on New Year’s Day we attended the traditional party at Marc and Patty’s. It was at Marc and Patty’s New Year’s party that we met, exactly thirty years ago. We like to say that we found each other under their Christmas tree, and they throw us an anniversary party every year. We stayed at the party for about an hour, then went home and had a nap. She sleeps in 20-minute chunks.

New Year’s Day also marks one month since the surgery, and the last radiation treatment is scheduled for February 2, so in some ways we are at the halfway point. There may be some side effects coming down the pike, but I doubt any of them will be worse than brain surgery and we got through that. Kate has been a complete champ, dealing with the immobilization mask and blood draws and hundreds of pills without complaint. We try to eat right and to get out and walk a couple of times a day.

I have changed the title of my LiveJournal blog from “The Days Are Just Packed” to “We Are Still Laughing.” Because even though the days still are packed, there are still moments of joy and shared humor in every day and I want to acknowledge that.

Our friends continue to be incredibly supportive. Beginning next week we will have out-of-town friends staying with us for most of January and chunks of February, which will be very helpful. People come to visit nearly every day, often bringing food, and cards and emails continue to come in. These are all really appreciated, and I hope they will continue in the new year. (One note: please don’t visit if you are sick.)

We now have a freezer in the basement and can accept deliveries of food at pretty much any time. We need healthy dinners with lots of protein, lots of vegetables and beans for vitamins and fiber, and little salt (it increases brain swelling). If there’s any other assistance you can offer, please do contact me; sometimes I need a reminder of the help that is available.

This is really hard, but with your help and support we will get through it. Thank you all so much.

David’s Index for 2014


Novel words written: 12,839
Short fiction words written: 21,967
Notes, outline, and synopsis words written: 26,143
Blog words written: 39,487
Total words written: 100,436

New stories written: 4

Short fiction submissions sent: 12
Responses received: 14
Rejections: 6
Acceptances: 8 (6 pro, 1 semi-pro, 1 translation)
Other responses: 1 (rewrite request)
Other sales: 1 (audio)
Awaiting response: 0

Short stories published: 7 (4 pro, 1 semi-pro, 1 translation, 1 audio)

Novel submissions: 5
Rejections: 5
Acceptances: 1
Awaiting response: 3

Agent submissions: 18
Rejections: 9
Acceptances: 3
Non-responses: 6

Happy New Year!

Journey

She has landed in a country she never intended to visit, on a flight she does not even remember having boarded.

She is an experienced traveler. Frequent flyer, passport full of stamps, culinarily adventurous, multilingual. Learning foreign languages is what she does for fun. She is not ready to be here.

It was a rough landing. She is still trembling.

She has not done her research — places to stay, things to do, people to see. This is very much unlike her. But the computers here are strange, incomprehensible. The keyboard is subtly different; it looks the same, but when she places her fingers on the keys she cannot even type her name. Her Google searches are redirected to a localized version.

The language barrier is the worst part. She can understand the people and the signage, mostly, but none of them seem to comprehend English. Instead, she must try to speak a language she has never studied — a language with strange grammar and inexplicable lacunae, lacking words for many common things. How could you not have a word for — ?

Her husband, her flying partner, is with her, which is a comfort. But though he is patient and helpful, he too must be addressed in the local language. Their friends sometimes travel here for a visit, but they share the same communication barrier and they depart far too soon.

This is an expensive place to visit, she knows. Fortunately this is not a problem for her. She is keenly aware that many others would be financially destroyed by this journey. They stay in the nicest hotels. The food is sometimes terrible.

They visit the American consulate every day. The staff are friendly, considerate, polite, helpful… but they cannot give her what she needs, which is a visa to return home. So sorry. Sign this form, sit here, take this pill. Maybe in a few weeks. The local government is difficult, fickle, intractable. Many travelers do not return.

She comes back again the next day, and the next.

She works to learn the language.

There is yet hope.

Radiation and Chemo, Week 1

TreeHappy Boxing Day!

Kate started her radiation and chemo treatments this week. So far the side effects have not been too bad, although she’s started to lose some of her hair, which is upsetting. However, there has been no nausea.

The aphasia, unfortunately, continues, varying in severity with the time of day and Kate’s energy levels. We’ve begun working with an excellent speech therapist, and she’s already given us some useful techniques to improve communication. Kate is fine at naming specific objects (“convergent naming”) but has trouble with generating specific words from a general concept (“divergent naming”) so visualizing an object or action in a concrete way before speaking is often helpful in working around the failure to find the word. Fortunately, she has no difficulties with reading or comprehending spoken language.

Radiation will be at 9:30 every weekday morning from now until about Groundhog Day. If you are in a position to provide Kate a ride from our house to Providence for this half-hour appointment while David gets something else done, it would really be appreciated. In particular, Kate will need rides to radiation at 9:30am and speech therapy at 3:00pm on January 8 because David has other appointments that day.

It is still very helpful to us to have home-cooked dinners in the freezer. Thanks to helpful neighbor Michelle, we are having a freezer delivered on 12/30, so we will shortly have much more room for frozen foods. If you could provide us a healthy meal with protein for damaged tissues, fruits and vegetables for fiber and vitamins, and not too much salt, it would be very very welcome. We expect to have out-of-town guests during some of January, so if you could provide a meal for three or four people that would be even better.

Christmas chez nous was pretty good. We had a delicious Christmas Eve dinner at new-to-us restaurant Cabozon, there were lots of presents under the tree (thanks in large part to Janna Silverstein, hero of the revolution), and on Christmas Day we had a lovely, quiet open house with just enough people, food, and jigsaw puzzles. The day was not without tears — I don’t think either of us has had a day without tears since this started — but it was, all in all, a very pleasant holiday.

The help and support you all have provided have been absolutely invaluable. Thank you so much from both of us, and best wishes for the holidays and new year.

Kate’s progress

Kate has now been home from the hospital for two weeks. She’s getting stronger, her balance is better, and the swelling and bruises are fading. The aphasia, unfortunately, is worse, which is very frustrating for everyone. We’ve re-started the steroid that was tapered off after the surgery, which should reduce swelling in her brain and bring her words back. Based on earlier experience it should take a few days to a week to have an effect.

We have met with the medical and radiation oncologists and Kate will be starting both radiation and chemo on Monday December 22nd. The radiation will be a five-minute treatment five days a week, the chemo a once-a-day pill (Temodar) taken seven days a week, both for about six weeks. After that there’ll be a month off, then monthly chemo (five days on, 23 days off) for six months or so. Everything is subject to change based on how she responds to the treatment. There will be unpleasant side effects, but it’s not supposed to be as bad as intravenous chemotherapy.

Our friends and relatives have been absolutely outstanding, especially Kate’s sister Sue and our neighbor Michelle. Many people have sent cards, packages, emails, and foodstuffs and they are all greatly appreciated. All of the medical and insurance professionals we’ve dealt with have been great. Also, we have solid financial resources and excellent insurance. We are as well prepared for this situation as anyone could be.

At the moment I have to admit that my biggest problem is not knowing how to ask for help. I’m pretty overwhelmed, but I don’t have the mental or emotional energy to figure out what I have to do myself, what I can outsource or simply not do, and what I can ask for that isn’t even on my radar.

If there’s something specific you can do for me or Kate, please let me know what it is.

If you’d like to come by for a visit, you’d be welcome! Just contact me by email (dlevine at spiritone dot com) or text (503-806-7562) before coming over, in case we’re out of the house or indisposed. We would also welcome more healthy dinners; our freezer is pretty full at the moment but I’m sure we will be eating into that stash (literally) as things get busy around the holidays. You can sign up to bring food on our mealtrain.com page. Ask Bo O’Dell (youknowmeasbo at gmail dot com) to add you if you aren’t already on that list. I will also be posting specific visit time requests on that page as soon as we know the details of our schedule for the next six weeks.

Thank you all for your support and good wishes.

Can you identify this song?

Ever since the surgery, Kate has been troubled by a never-ending persistent earworm on a short loop. We are now trying to identify the song, in hopes that hearing the whole thing might help to break the cycle.

It’s a pop song from maybe 5-8 years ago. It has two male vocalists. One is singing, or perhaps chanting, in English; the other is singing, or perhaps chanting, in a “whiny kind of wail” in some indigenous language. The indigenous guy is, she thinks, some kind of sample or anthropological recording and there might have been some kind of controversy a while ago about the rights to it. The song is fairly upbeat in meter and tone.

The name of the song might perhaps be something like “Nirvana” or “Nihata.”

Any guesses?

EDIT: A suggestion on LiveJournal by user “crazysoph” was not quite correct, but it was close enough for me to come up with the tune… though not a title. However, a Google search for “song indian ay yay yai ya hai ya yai” led to a question on Yahoo Answers which led to the answer: it is “Return to Innocence” by Enigma (https://www.youtube.com/watch?v=Rk_sAHh9s08). Thanks, all, for your suggestions!