David D. LevineScience Fiction Author

The Lion at Portland Center Stage is a very powerful one-man musical — or long autobiographical essay told largely in song — about a thirtysomething songwriter who’s survived a hell of a lot in his short life. It was very good and full of surprises and emotionally draining and yet managed to pack in a lot of laughs. If it’s coming to your area, I recommend it.

It’s been kind of two steps forward, one step back this month. Kate woke up one morning with chest pains and we went to the emergency room. They kept her in the hospital overnight for observation; it turned out not to be a heart attack, but was still a stressful and exhausting experience.

We also tried reducing the steroid dose again, and again this resulted in a return of the aphasia and other symptoms so we went back to the previous dose. She’s much better now, but after all that I feel that we’re basically back where we were at this time last month. We won’t be trying that again any time soon, unless there’s some solid evidence that she doesn’t need the higher dose any more.

We did get another MRI this month. We were both pretty nervous about the results, but when we saw the scan it was were pretty much the same as the last one, with some improvements. The areas of “enhancement” are a bit smaller, one of the spots went away completely, and there’s no indication of increased blood flow (associated with tumor growth). This is good news.

Also good news: we took a trip to Las Vegas, which went well. We saw three shows, ate many excellent meals, visited the Mob Museum, and goggled at the architecture. We did not gamble at all. It was a pretty laid-back trip by our usual standards, but we were exhausted when we came home; I’m really not sure whether or not we will be up for the square dance convention in late May. We’ll play it by ear based on our energy levels.

All in all, Kate is generally doing well. She can’t drive and can’t walk very far or very fast, but she’s been cooking and today she even took a trip on the bus while I was at yoga class. We hope for continued improvement in the months to come. If you can come by for a visit or send a card or some cookies, please do so.

As you may recall, I had a small spot removed from my nose two weeks ago. Well, I got a phone call from the dermatologist’s office yesterday, saying only “call us.” Unfortunately, I didn’t get the message until after the office was closed.

As you might guess, I didn’t sleep well. At all.

The news, when I finally got it this morning, was not what I’d hoped to hear but not nearly as bad as I’d feared. The spot is an “in-situ squamous cell carcinoma,” in other words a type of skin cancer. But it is not malignant, and is easily treatable: it’s a 15-minute procedure in the doctor’s office, with a 98% cure rate. Basically they just “scrape and burn” until they find healthy tissue. This a very common procedure; one in five people gets skin cancer at some point in their lives.

So, all in all, not too bad. But, seriously, this can stop any time.

Hug the people you love. And wear sunscreen.

Kate woke up at 5am yesterday with chest pain, and we went to the emergency room. Initial tests indicated it wasn’t a heart attack, but they kept her overnight for observation and more tests. Those tests also showed it wasn’t a heart attack, though it took until noon today to get a doctor to sign off on that and let us go home. :-(

It’s tough for the doctors to tell what the cause of the pain actually was, but it was likely heartburn from the steroids. Kate was already taking an anti-heartburn med (Pepcid) for that, but we got a prescription for a stronger one (Prilosec). We will also be seeing our regular doctor on Friday to follow up.

Hospitals make you “sick.” By which I mean that the simple fact of being in the hospital takes away your agency and turns you into a “sick person,” an object. Your clothes are stripped away and you are given a stupid gown that does almost nothing to protect your privacy or dignity. You sleep, eat, and drink on someone else’s schedule, and none of it well. You are forced into a horizontal position in which everyone literally looks down on you. You are poked with needles, given drugs which often make you feel worse, and forced into inactivity even if movement and exercise might make you feel better. It’s all done out of kindness and for the best of reasons, but the whole thing seems engineered to make you powerless and miserable.

The whole episode was time-consuming, anxiety-inducing, and exhausting, but at least it won’t cost us anything in cash — we’ve already hit our “out of pocket max” for the year. In the larger scheme of things, this was just a bump in the road.

Thanks very much for your support, especially Nancy, John, Dave, Merilee, Bo, Don, Janna, Mary, and Teresa, all of whom came by to keep us company and let me get away from the room when necessary.

Onward.

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!