Another good round of tests

I see it's been a year and a half since I've updated this blog.

Deb continues to get tests -- MRI, blood tests, physical exam -- every six months. They've all looked good.

In the old days, each round of tests used to reach a clear culmination: the meeting with the oncologist, who would have all the test results and be in the best possible position to make a judgment about Deb's health. But more recently, Deb's been reading the most important test results online before we see the oncologist, some blood tests don't come in until after, and (all in all) there hasn't been that one clear moment that feels like a new six-month lease on life. So my indecision about when to blog has turned into forgetting to blog.

Sorry. I'll try to do better. But in general, if there were bad news I would absolutely be letting everyone know.

Thanksgiving news

A few days before Thanksgiving, we got some news to give thanks for: Deb's latest round of regularly-scheduled testing shows nothing new and nothing that needs treatment.

I had to phrase that very carefully to be accurate. Back in June, 2011, when half her liver was taken out to contain a runaway epithelioid angiomyolipoma, the doctors saw a couple of similar-but-smaller growths elsewhere in her liver. Since then, the suspense has been over whether they would grow like their cousin did.

We've now got several pictures of them taken over the last 17 months, and they seem not to be doing anything. They're still there -- where would they go? -- but they're still less than half a centimeter across and stable.

Since they aren't causing any symptoms, and people without symptoms don't get their livers scanned, it's possible that thousands or even millions of people have similar growths and just never notice them. Still, we're keeping an eye on them. We'll take another picture in about six months.

Another boring check-up. Boring is good.

Deb got the full battery of tests in May: CT scan, MRI, mammogram, blood. They all look good. As a prostate-cancer survivor told me: "'Come back in six months' is the best news you can get."

Some very good news

I think I should begin like one of those TV shows with a complicated plot: "Previously, on How is Deb? …"

In May, Deb's regular twice-a-year CT scan showed something growing in her liver. We immediately thought it was a recurrence of one of her previous cancers and freaked. A biopsy showed it to be an epithelioid angiomyolipoma, a very rare beast indeed, but not as scary as breast cancer or GIST in the liver.

Nonetheless, it was growing and had to come out, so Deb had surgery on June 17, losing about half her liver plus her gall bladder. The surgery went well, but the pathology report didn't show clean margins, and the ultrasound during surgery showed two smaller lesions that might be similar growths. The plan then was to wait three months, then do another ultrasound and see what was what.

When you're dealing with something none of your doctors have ever seen before, the possibilities are endless: The remnants of the removed growth (those "dirty" margins) might keep growing, the two smaller growths left behind might get bigger. More of the buggers might show up. And so on. All summer, we were focusing on Deb recovering from surgery and trying not to focus on things we couldn't know.

Now that you're caught up, I can tell you about today: We just got back from the 3-month ultrasound, and none of the bad stuff has happened. Nothing was seen growing on the margins, and the two left-behind growths are the same size they were three months ago. (For all we know, they may have been there forever -- nobody had a reason to look for them until June.)

I suppose you could imagine a better outcome at this point -- the two little lesions might have magically vanished or something -- but of the non-magical possibilities, this was the one we were hoping for.

As far as the recovery-from-surgery stuff, it's going slowly but well. She doesn't have her full energy back yet, but she's working her usual schedule and eating a normal diet. The ultrasound also showed a fluid build-up around the site of the surgery, but it doesn't seem to be infected and the doctors don't seem worried about it. They expect the fluid to get re-absorbed eventually.

Looking forward, we go back for another ultrasound and/or CT scan in six months.

De-cyborging

Wednesday we saw the surgeon, Dr. Hanto, again. He looked at the incision, agreed that everything continues to look good, and took out the drain -- a piece of plastic tubing that had been coming out of Deb's side and attaching to a little plastic bottle she had to empty pinkish fluid out of twice a day.

I had pictured the drain like a beer tap, going in just far enough to get past the barrier of skin. But in fact they pulled out more than two feet of tube, the last section being wider than the first, so that the hole had to open up a little further to let it out. It was a teeth-gritting experience, and Deb has felt a little internally bruised since.

Still, she's glad to have it out. The cyborg-like tube had made her feel unpresentable, and she worried about being out in crowds where the bottle might get jostled. So we may be more sociable now.

In general, Deb is very much like her normal self, but comes in smaller doses. Her main symptoms are a short attention span, not much patience, and very little stamina. (Strangely, I also have a short attention span and very little stamina. It's like the sympathetic pregnancy symptoms Dads-to-be sometimes get.)

We're still trying to figure out how to think about the future. Dr. Hanto, with a surgeon's typical confidence, was undisturbed that the surgery didn't get clean margins. He said he'd be "very surprised" if the thing he took out grew back. He answered our questions patiently, but I could tell that our attempts to visualize worst-case scenarios struck him as strange. To him the epithelioid angiomyolipoma was not exactly a cancer, but mostly just a growth in an unfortunate location.

Last week when we saw Dr. Pandya, the oncologist, she gave us a more uncertain view. Epithelioid angiomyolipomas are so rare that nobody really knows why they start growing or what they might do next. We'll do an ultrasound in September and see what we see.

This intangible factor is where we find ourselves missing our 15-year relationship with Deb's previous oncologist, Roger Lange, who is on leave with his own health problems. Dr. Lange always modeled the proper level of concern. We still worried, but we had confidence that we were worrying about the right things in the right quantities.

mixed pathology report

We just got back from seeing our doctors at Beth Israel. The pathology report had both good news and bad news in it. The main good news is that the growth was indeed what they had diagnosed: an epithelioid angiomyolipoma, and not a recurrence of either of Deb's two previous cancers. It was also good news that the other (smaller) lesions that turned up on the ultrasound during surgery seem to be epithelioid angiomyolipomas of a less serious kind; there is reason to hope they might sit there doing nothing into the indefinite future.

The bad news was that the surgery did not produce a clean margin; the tumor goes right up to the edge of the removed lobe and presumably somewhat beyond. Dr. Hanto, the surgeon, says that he cauterized the area, which would kill the tumor cells for another few millimeters. Whether that is enough or not, or whether the surviving cells will be able to reconstitute a viable tumor, we don't know. (Something similar happened when Deb's GIST tumor was removed in 2003. That time the cauterization seems to have been enough, and the GIST has not been seen since.)

Dr. Pandya, the oncologist, emphasized the unchartedness of the territory we're in. Malignant epithelioid angiomyolipomas are extremely rare, to the point that we're talking in terms of case reports, not studies or statistics. (For example, we don't know whether the small nonmalignant epithelioid angiomyolipomas are unusual or not. It's possible lots of people have them and never notice them. Deb may have already had these for many years.)

Both doctors recommended watching to see what happens next rather than jumping into more surgery or some other kind of treatment. We have another ultrasound scheduled for late September, when Deb's liver should have healed and regrown.

Everyone seems happy with the way she is recovering from surgery. We'll go back for another follow-up with the surgeon next Wednesday.

Deb is Home

It took battling through Boston rush hour in the driving rain, but I got Deb home yesterday. She is alert, but achy and without stamina. So if you decide to call her, it's probably best to keep it short.

She's eating normal food, but it will be a while before she returns to her usual diet. The first thing she asked for on getting home was takeout pad thai, not the extra-spicy chicken basil she usually orders.

Still no news from the pathologist. We have appointments next Wednesday with both the surgeon and the oncologist, so I imagine we'll find out more then.