David D. LevineScience Fiction Author

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.

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.

Happy 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 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.

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!

Back in April, my car (actually Kate’s car) and I got a call from the extras agency for the new TNT show The Librarians, to work as background for a street scene in “Washington DC” (the Capitol in the first shot below was digitally inserted). I’m pleased to say that the one scene I worked appeared in the premiere episode — you can see me at about 6:53.

I thought the show as a whole was cheesy fun, but I don’t know if I’ll be watching the series.

We came home from the hospital on Thursday and have been mostly trying to catch up on our sleep since then. Thank you all for the good wishes/support/meals/cards [cookies!] you have sent. Om nom nom, really truly.  

Kate is very tired and has difficulty communicating, but she is improving every day. She got out of the ICU and then home from the hospital more quickly than anticipated, a very positive sign. Her sister Sue left this weekend, but will be back later this week. We will be meeting with various doctors in the coming week, and will know more about our schedule going forward after those meetings.

We would welcome visitors at just about any time we are home and awake. Conversation and distraction are wonderful, but we do need to keep an eye on our energy level, mine as well as Kate’s. It’s also very pleasant just to have someone around who is reading or knitting or working on a jigsaw puzzle while I run an errand or take a nap.  

If you would like to come by for a visit or bring/send food, our friend Bo O’Dell has set up a page on a site called “Meal Train” which you can use to schedule yourself. Please contact him (youknowmeasbo at gmail dot com) for information on the site.

HOWEVER, if you find yourself able to pop by, day or evening, please text or call my cell (503-806-7562) and we’ll let you know if we are up for visitors.

You want to take 5 minutes to call? Just call.  

One thing that is really important is to understand that this is going to be a long haul — we are looking at weeks and months of treatments. We really welcome your help now, but will be needing it even more later on as people burn out. So it’s really, really okay if you can’t come by this month.  We will still need your help in 2015.

I’m also trying to get back to my writing, and we’re looking at setting up regular writing sessions with other writers, either here at home or possibly at a coffee shop nearby (which might involve scheduling another person to be with Kate while I’m offsite). If you’re interested in joining in, email me.

Thanks again for your help in this difficult time.

Kate is out of the ICU and into a normal room. She is recovering quite well from the surgery and we anticipate that we will be going home today.

We got the histology report on the mass and it is a malignant tumor. We have met with two oncologists and the treatment plan under consideration involves both radiation and chemotherapy.

We will be needing lots of love and support over the next six months or so, especially meals, transportation, chores, and logistics. Please contact Bo O’Dell (youknowmeasbo at gmail dot com) if you can help.

Please do one thing for me. Don’t say “fuck cancer.”

Had a Thanksgiving dinner that couldn’t be beat yesterday, and had lots of fine conversation with some of our oldest fannish friends. It was a good time. We will get through this.

I had wondered what happened during the functional MRI. Kate said that there was first a general MRI (just holding still while the machine banged and thumped), then a finger-tapping exercise (tap a finger for 30 seconds, then hold still, then tap again), then an exercise of nouns and verbs (given a noun, think of the corresponding verb), then an exercise of concrete/abstract (given a verb, think of whether it is concrete or abstract), then another exercise she doesn’t recall. It was all kind of boring and repetitive and some of the tests had to be done over because she dozed off, though they still finished it all up in just under the scheduled two hours.

The answer to the question “how is it that they can ask if you are claustrophobic and also say that you have to be able to read text five feet away??” is that she had an angled mirror in front of her eyes and the words were shown to her on paper cards (some printed, some hand-lettered) held up near her feet.

The paper cards and hand-lettering tell me that the tests vary a lot depending on exactly what brain areas are being examined for the particular patient, and also that this is a very new type of test. This also suggests a reason for the whole deal with the contact lenses — they are still figuring out how to effectively administer this test. Perhaps in five years the prompts will be displayed on a screen and they’ll have a rack of glasses with all-plastic frames in a variety of common prescriptions.

I’ll just leave you with today’s XKCD: