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04 March 2015 @ 08:00 pm
How we spent our February  
As you may recall, Kate finished up her daily radiation and chemotherapy treatments on February 3. The month of February was a month off from treatment, and we largely spent it relaxing. Though we were not able to attend Potlatch because of the risk of "con crud," we did spend a weekend at the Sylvia Beach Hotel, a book-themed hotel at the Oregon coast (we had the Amy Tan room), and I ran off to the Rainforest Writers Village writing retreat, where I wrote an unprecedented-for-me 15,000 words on the sequel to "Arabella of Mars." It was in general a very productive writing month for me... I also wrote a short story for a Chinese website and a novelette in the Wild Cards universe, about which I'll have more news when they get closer to publication. We also saw five Portland International Film Festival movies.

During the month we had Tom and Karen, Sue and Alex and Cheyenne, and Mary Kay as house guests, for which we are very grateful, especially to Mary Kay who spent a whole week with Kate while I was at the Rainforest. Lots of other friends also came by to visit, and many of them brought food or helped with errands. I am also very pleased to say that we've begun cooking for ourselves again, at least some of the time, which is extremely satisfying.

For most of February Kate was getting gradually better, with the fatigue lessening and the aphasia very manageable, though she was still rather tired and wobbly. She was doing so well that we tried to wean her off of the steroids, which reduce brain swelling but have other, undesirable side effects. By the end of the month she was down to one steroid pill a day... but unfortunately the aphasia came back in spades, to everyone's intense frustration. We just met with the doctor today and we are raising the dosage to two pills per day, effective immediately. Based on previous experience that should reduce the aphasia within a week.

Also at today's doctor appointment we reviewed the MRI (brain scan) taken at the end of February. As we had been warned might be the case, there is quite a bit of "enhancement," or tissue that absorbs a lot of the contrast material, at the edges of the place where the tumor was removed. There's no definitive way to tell from the MRI what this is, but the blood flow in the area and the timing (three months after a successful surgery) imply it's radiation damage, which often heals by itself, rather than new tumor growth. Again, this is something we'd been warned about beforehand, so we are not yet overly concerned about it. We will continue to use steroids to treat the accompanying swelling, and hope for the best.

But we are not just hoping. On the advice of the oncologist, naturopath, and other professionals we are trying to eat right (lots of vegetables, lots of fiber, mushrooms and active-culture yogurt every day, and few refined white carbs) and get as much exercise as possible. The steroids have caused Kate to lose a lot of muscle, so we are starting with just 15 minutes of gentle exercise 3 times a week, aiming to bump that up by 10% every two weeks. Exercise has all kinds of benefits, including reducing those steroid side effects and the chance of cancer recurrence. I'm trying to get more exercise myself, including yoga once a week and plenty of walking. The weather is improving, which will make this easier.

The second round of chemotherapy begins as soon as we can get the drugs from the special pharmacy, likely this week. This is the same drug as before, Temodar, but at about twice the dose. There's a greater risk of nausea with the higher dose, but as Kate had no nausea to speak of in the first round we hope that it won't be a problem this time either. Despite the higher dose, many patients find this second chemo round to be much easier than the chemo + radiation in round 1.

Kate will take chemo pills for five days, then have 23 days off, then repeat for the next six months or so. We can expect fatigue, but few other side effects, so we hope to be able to do some travel, even international. We'll know more next week about how well she tolerates this therapy.

All in all, apart from the current aphasia (which we hope will clear up soon), things are going about as well as can be expected. Your help is greatly appreciated and will continue to be needed going forward; if you can come by with a home-cooked dinner or to do laundry or dishes it would be wonderful.

Thank you all very much for your help and good wishes. They mean more to us than I can say.
 
 
 
martianmooncrabmartianmooncrab on March 5th, 2015 10:07 am (UTC)
I have found with my aphasia, even though its much better, I have "special words", this week it was lawn mower, I used motorcycle and sewing machine in place of it. Its all small machines as it were in my brain.

I am so glad to hear that Kate is doing better!
Doug Fauntn6tqs on March 5th, 2015 11:36 am (UTC)
Thanks for the update- I've been wondering.
Timapparentparadox on March 5th, 2015 03:41 pm (UTC)
It helps if you can find exercise stuff that you actually enjoy, but remember that lots of activities can be exercise, especially for Kate who is getting back into moving. Even taking a break from reading every 10 minutes and using the book as a weight & moving your arm around holding the book outstretched can be beneficial!

I've been trying to get more active, and have been using an app on my iPhone that warns me when I've been sitting around too long. I try to get up & do a few push-ups, or some abs work, or just walk over and play with Loupi a bit.
KMS: balesvgqn on March 5th, 2015 04:34 pm (UTC)
So glad to hear things are mostly going well and that you've been able to write as well! Hugs.
Amy Sissonamysisson on March 5th, 2015 06:53 pm (UTC)
Thanks for the update!

I'm not close enough to be much help, but I hope it brightens your day to have me tell you that I loved your story "Damage" on Tor.com. I'm reading a story-a-day in 2015, and blogging about my favorites at the end of each month. Here's what I had to say about your story....

http://amysreviews.blogspot.com/2015/02/short-fiction-february-2015.html
David D. Levinedavidlevine on March 6th, 2015 06:01 pm (UTC)
What a sweet review! Thank you! And thanks, too, for the Nebula rec!
Terry HickmanTerry Hickman on March 7th, 2015 08:53 pm (UTC)
I, too, have been stopping by daily hoping for good news, and here it is. Things sound like they're going pretty well, and you've got a plan, and all that. I'm so glad! I'm too far away to visit (and you don't know me, really, anyway :^) ) but I'm sending best wishes daily!