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02 January 2015 @ 10:54 am
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.
martianmooncrabmartianmooncrab on January 2nd, 2015 08:31 pm (UTC)
I think I need to clarify what exactly I mean by "aphasia.

its extremely frustrating to know the words and they just wont appear.. cuss words however, manage just fine on their own.. sigh. It will get better.. sometimes its just easier to express the anger at the misbehaving words and carry on.
They Didn't Ask Me: smirking-winsletdr_phil_physics on January 2nd, 2015 09:06 pm (UTC)
It's interesting that all the ones you mentioned are two word combos. The brain is a fascinating organ, but hard to understand. My mother is 90 and increasingly confused -- some of the things she claims to remember, well, it's an education.

All the best for both of you and I am so relieved you have local people helping you with meals, etc.

Dr. Phil
They Didn't Ask Me: braindr_phil_physics on January 2nd, 2015 09:13 pm (UTC)
Also, I think I am going to have to start a Jay Lake Award for blogs which take the time out of a difficult situation to explain what's going on medically. Although what I went through last summer was not medically related, both Jay Lake's and Ferrett Steinmetz's blogs about cancer and open heart surgery really helped with dealing with my own 5½ months in hospital and its aftermaths.

The LJ icon, BTW, is of Jay Lake's brain.

Dr. Phil

Edited at 2015-01-02 09:13 pm (UTC)
Alec Austinalecaustin on January 2nd, 2015 11:45 pm (UTC)
Appreciate the updates; I'm glad to hear that the steroids are helping, as aphasia of any sort is no joke. May the second half of active treatment go as smoothly as the first seems to have.
desperance: lukedesperance on January 3rd, 2015 02:22 am (UTC)
Has it been a month already? *blinks* That's the foreshortening of distance, I guess. I am hoping to come closer; with any luck we'll have a trip up to Portland in the spring, and hope to catch up with you then.

(Meanwhile, a side-note about losing your words: I totally lost the word for refrigerator one time, and could only say "the cupboard of cold things". Which became the title of a story, so.)
daveydamascene on January 3rd, 2015 04:00 pm (UTC)
Yay for the successful passing of mileposts! It sounds like y'all are managing this, and that is no small accomplishment. Wishing stamina and lots of good naps to Kate, and hugs to both of you.
deborahjross on January 3rd, 2015 07:49 pm (UTC)
Still sending you both love and support.
kathrynmicekathrynmice on January 6th, 2015 07:40 pm (UTC)
You two sound like you are doing great at hanging on. I can't wish for anything better than that. I will miss Kate's visit for Knitting Con - whatever that was called - in February, but I expect to see her next year! If this temp assignment goes permanent, I will have the money to sign up for classes too!

Happy New Year.

the laughing leaping water: her3minnehaha on January 7th, 2015 10:03 pm (UTC)
I am stranded here in Portland because of a family matter. Would you like a visitor? Also, I believe I will have time and facilities to cook for youse. Should my belief be correct, what would be best to make for you? I default to lasagne in these matters, but I am a good cook and can make anything.

David D. Levinedavidlevine on January 8th, 2015 12:10 am (UTC)
Sorry you are stranded. We would welcome a visit and home cooking! Let's take this off LJ -- my email is dlevine at spiritone dot com.