David D. LevineScience Fiction Author

Things are going pretty well here. The last time I posted about this, we had tried reducing Kate’s steroid dose and the aphasia came roaring back, and we were just about to begin the second round of chemotherapy.

The chemo — five days of pills, with a doubled daily dosage — went off with almost no side effects, and the increased steroids have worked well. She’s gone from “can barely get a full sentence out” to “some hesitation and occasional wrong words.” The steroids do carry some undesirable side effects, including facial swelling and tremor, but for now we will just have to live with them. The next round of chemo begins later this week.

At the moment Kate’s biggest problems are strength, stamina, and balance. But those are all better than they were, and her mental energy and concentration are improved; she’s being all ambitious and proactive in a very encouraging way. She does have some memory issues, which may or may not improve with time. But she’s been cooking and decluttering and doing crossword puzzles and knitting (slowly) and just generally being more Kate-like. She can walk faster and farther than before, and doesn’t have to take several naps a day any more. Still not driving, though, and I don’t think she has the stamina to take the bus, so when I go out of town I still want someone in the house to help her. We both hope that won’t last forever.

We have continued trying to walk a lot, exercise several times a week, and eat right. Spring is definitely here (we’re well past crocuses and daffodils and into tulips and cherry blossoms), which makes the walking easier and more fun. And Kate has started working with her trainer at the gym again, which can be exhausting and sometimes kind of discouraging but a very good forward step. We could both be exercising more than we are, but what else is new?

I’ve been doing pretty well myself. Progress on the novel continues, I’ve seen some short story reprints, and I’ve been working on a novelette that I hope to be able to tell you more about soon. I’ve been doing weekly yoga and got a couple of days out of town on my own. I also got a small spot removed from my nose (“It’s probably nothing, but let’s take it off and have it analyzed”) and finally got a clean bill of health on my lungs, which we’ve been watching for possible sarcoidosis for the last year and a half.

Thanks to Janna, Andi, Dave, Will, Brenda, Ariel, and John (and possibly others I’ve forgotten), all of whom came by for a short or long visit. It’s greatly appreciated, because we haven’t been able to go to a convention or square dance for months. However, we are trying to get back to dancing (we’ll see how that goes) and will visit Las Vegas in late April. This trip is a bit of an experiment, which will help us figure out what we can and can’t expect to be able to do on future trips. In May I will fly to Southern California for a week to record some more technical training videos for lynda.com, and we hope to attend the annual square dance convention in St. Louis. After that, who knows?

Thanks for your visits and cards and letters and emails. This is a marathon, and your cheers help keep us going.

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.

My story “Mammals” has appeared on StarShipSofa, narrated by me!