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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!

Me on The Librarians

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.

David Librarians 1

David Librarians 2

David Librarians 3

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

Home from the Hospital

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.

Update on Kate

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.”

fMRI

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:

From Kate’s brother

Kate got this note from her brother:

Don’t let this opportunity go unrealized:
Sudden craving for pad thai and pickles? “Brain Surgery”
Caught watching “My Pretty Pony”? “Brain Surgery”
Tell everyone it was a sunflower seed you put up your nose when you were four, or an absorbed twin.
When you come out of surgery, don’t recognize anyone and claim your name is Ethel Shapiro.

Happy Thanksgiving, all.

Thanksgiving eve

Kate had a successful functional MRI today. The biggest problem, she said, was not falling asleep during the long boring stretches. The new contact lenses worked well enough, and she managed to get them in and out before and after the test. She may not ever use them again, but they did the job.

She brought wooden knitting needles and a ball of yarn, but didn’t get to use them.

We don’t have “results” from this test, nor did we expect to. I believe the purpose of the test is to map out the parts of her brain that Kate is actually using, so as to properly avoid them during the surgery. There will be an additional MRI, called a “stealth” MRI, during the surgery itself — the neurologist described this as “a GPS for the brain.”

Kate’s language and cognitive skills are generally better than when we went to the ER, thanks to the steroids I think, though she does definitely still have some interesting issues, such as coming out with exactly the opposite word from what she meant. “It would be fascinating if it weren’t happening to me,” she says.

We have had much love and assistance from many friends, especially Bo (coordination), Ariel (laundry and beef stew), and Sara (more than enough delicious food for four meals for the three of us, left in a cold-bag on our porch while we were at the MRI), and double-especially Sue, as well as many good wishes from farther afield. We’ve also received one anonymous gift, a knitting-themed tote bag via Cafe Press, for which thanks. I may not be able to keep up with the individual thanks as things get hairier, but please know that you are all appreciated more than you could ever know.

In some ways this experience, terrible though it is, is kind of… cleansing. All my priorities have been reduced to two: 1) This has to be done NOW; 2) Fuck it. I have, with great reluctance in some cases, canceled or postponed almost everything we had been planning to do through January. With luck that will be sufficient.

I cannot imagine doing this without cell phones, text messages, and mobile email. I took three phone calls and uncounted text messages during a one-hour consultation with the nutritionist.

At one point, while waiting for some doctor, I began whistling the Jeopardy theme. Right at the end, where the last low “dum DUM” comes in the song, my phone sounded an incoming text message. We laughed and laughed.

We are still laughing.

We expect to attend Thanksgiving dinner with our fannish friends. Everyone have a good Thanksgiving, and hug your loved ones.

Kate’s surgery scheduled: 12/1

Okay, we have a date for Kate’s brain surgery. It’ll be in the morning on Monday 12/1. The surgery will be probably about 3 hours and she’ll be in the hospital for 3-5 days after that, of which at least one day will be in the ICU. If you can provide assistance, comfort, and food any time during the hospital stay or during the weeks of recovery at home thereafter, please contact Bo O’Dell (youknowmeasbo at gmail dot com) to coordinate.

We have a functional MRI scheduled tomorrow afternoon. During this test Kate will be performing several daily functions, including reading, while they look at her brain to find out what parts she’s actually using (I guess to make sure they leave those bits alone). But reading in the MRI machine is problematic because you cannot have ANY metal. So this means she has to wear contact lenses.

She does not wear contacts. Never has.

Ever try to get contact lenses prescribed and fitted on one day’s notice during Thanksgiving week?

The people at Hawthorne Vision Clinic have been exceptionally helpful so far. Just heading there now. Thanks too to Kate’s sister Sue, hero of the revolution.

More news as it develops. Thank you all so much for all of your good wishes and offers of assistance.