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.

Deb might come home soon

Deb is recovering from surgery as expected. We haven't seen any post-operative complications, so the main thing that is keeping her in the hospital is the need for IV tubes. Today they have her trying to eat semi-normal food and take her medication in pill form. If that all works, she could come home as soon as tomorrow.

My plan had been to go to the hospital every day and hang around reading and using the hospital wireless internet while she dozed. But I've had a cold and they've been keeping her in a ward of transplant patients, where sick visitors are discouraged for obvious reasons. I was feeling particularly chipper yesterday afternoon, so I drove in (about 60-90 minutes each way, depending on traffic) and spent a little over an hour with her before I felt a coughing fit coming on and left. Today I'm a little worse again, and I'm planning to spend what energy I have getting the apartment straightened up.

We still have heard nothing from the pathologists who are studying the lump of liver the surgeon took out. Nobody has made any promises, but I'm expecting to get a report by the end of the week.

Deb is out of surgery

Deb went into surgery first thing this morning, around 7:30, and was in the recovery room by noon. I haven't seen her yet, but I've been getting regular updates from the staff, who say everything went well.

I talked to Dr. Hanto, the surgeon, after the surgery. He said they took out the parts of the liver they had planned to take out, and that the tumor was completely removed.

And then he said something I found confusing, and I have had to remind myself that in both of Deb's previous surgeries (in 1996 and 2003), some impression I got from the surgeon turned out not to be right. (In 1996 the surgeon was too optimistic, in 2003 too pessimistic.) So here it is, for what it's worth: Before cutting into the liver, they did an ultrasound to locate the tumor more precisely. They saw it, but they also saw other small blips in both the part they were taking out and in the remainder of the liver. After removing the selected part of the liver, they sliced into it looking to identify what those other blips had been, and they couldn't find them. Dr. Hanto described this as "nothing to worry about."

I interpret this as: We thought we saw something, and then we looked closer and didn't see it. But the pathologist will look closer yet and will have the last word. I have no idea whether I should be worried or not.

As I write this I am very tired. I have a cold, and we had to get up at 4 to get to the hospital and jump through all the necessary hoops to have a 7:30 surgery. (Route 2 in Cambridge was spookily empty at 5. Sunrise streaming down the Charles is spectacular, though I hope not to see it again anytime soon.) I'll write more when I know more.

Surgery scheduled: June 17

This afternoon we met with Dr. Douglas Hanto, the surgeon, and his team. He described the placement of the growth in Deb's liver and the plan of surgery. The most likely possibility -- he won't know for sure until he starts operating -- is to remove the entire left lobe of the liver. It's possible that a smaller extraction would be enough, but he doubts it.

That may not be as bad as it sounds. He anticipates a four hour surgery, five days in the hospital, 4-6 weeks of recovery, and three months until "you don't feel like you had an operation". I hadn't been sure that there wouldn't be permanent consequences, so that sounded pretty good.

Naturally, there are all kinds of things that can go wrong -- Dr. Hanto listed them for us -- so any of those recovery targets could slip. But none of the risks sounds all that bad compared to a breast cancer or GIST recurrence, which was what we were picturing a week ago.

Various people have been telling us that livers regenerate, and today we finally got some details: Lobes don't grow back, but the liver in general grows when it's being used to its capacity -- sort of the same way muscles do. So after a month or so Deb would have a normal-sized liver, except that it would all be in a super-sized right lobe. The lobes aren't purpose-specific, so a big right lobe can do everything a complete liver does.

We opted for June 17, which was one of the earliest dates we could get. (This is a situation where we would rather have the surgeon we want than get it done fast.) That blows away our plans to go to the General Assembly of the UUA -- which starts the day we would plan for Deb to get out of the hospital -- so if you were planning to see us there we'll have to connect some other way.

Deb continues to have no symptoms worth mentioning, so we plan to live a normal life for the next three weeks or so.

Still looking better than expected

After the pathologists had another couple days to look at Deb's biopsy, they came to the same conclusions: not breast cancer, not a GIST, probably something very rare called epithelioid angiomyolipoma. It's a serious thing, but (as Dr. Pandya says) "very good news compared to the other scenarios we were considering".

The liver surgeon has looked at the CT images, and says he can take the growth out. We don't know when that will happen. We're meeting the surgeon Wednesday to find out what surgery and recovery entails.

We hope to get a definite surgery date then, but we'll see. The good news that this might be less life-threatening that it first appeared has the associated bad news that removing it may not be as high a priority for the surgery-scheduling people.

The mood in our household is considerably improved. We have learned not to put too much trust in needle biopsies, so we won't really relax until a pathologist looks at what the surgeon takes out. But active disaster planning has been suspended.

When I know something more, I'll pass it on.

Some news, mostly better than expected

We just got off the phone with Dr. Pandya. The biopsy did not hit the tumor as well as they would have liked, so all the conclusions are iffy. But it's definitely not a recurrence of breast cancer, which was the worst possibility. It's also probably not a recurrence of the GIST, which is what we were expecting.

The best explanation so far is a third kind of cancer, one that is extremely rare: epithelioid angiomyolipoma. (I had never heard of it either.) It's sufficiently strange that there aren't statistics worth mentioning. You take it out, and most of the time it doesn't come back, but sometimes it does.

All in all, that's a better deal than either of us were expecting: liver surgery, which looks tricky but is probably doable, and then we wait and see, with some reasonable amount of hope.

And remember: That's all still tentative. There were some other tests they want to run, the GIST recurrence is not completely ruled out, and Pandya hasn't got a definite I-can-do-that from the liver surgeon yet.

She's planning to call us back tomorrow.

No news till Wednesday

We just got back from meeting our new oncologist, Shuchi Pandya, a woman who seemed competent and personable, and has one of the qualities I admire in our previous oncologist, Roger Lange: not seeming pressed for time, no matter how many questions you ask. (We have been told that Dr. Lange, who we have been seeing since 1996, is on indefinite personal leave for a health problem. Good luck to him.)

The biopsy is not back yet, but Dr. Pandya expects it Wednesday for a meeting a group of doctors (including the surgeon who removed Deb's GIST in 2003, and another surgeon who specializes in liver surgery) is having at noon. We expect to hear from Dr. Pandya late Wednesday afternoon.

Biopsy complete. Now we wait.

We are back home now. The biopsy is done and we won't have results until sometime next week.

We arrived at Beth Israel Deaconess in Boston at 7:30. We had stayed with friends in Lexington Tuesday night so that we wouldn't have to drive quite so far.

After some prep, Deb was taken away for the procedure at around 9. Conceptually, it's pretty simple: They gave her a local anesthetic, hooked up an ultrasound machine so that they could see what they were doing, and stuck a needle into the mysterious part of her liver. They had to stick her twice before they were confident that they had what they wanted -- which we had been warned was about average.

I got to see her again about 10:30. She was drowsy (and I wasn't much better) so we did nothing in particular while the nurses waited to see if it was safe to take her home. They had her drink some juice, eat two small muffins, and walk around a little. None of that produced any bad result, so they let us leave at about 1.

She's got two band-aids on her side, and a small bruise. We stopped for lunch on the way home; she had a good appetite and seemed to enjoy eating. We were back in Nashua a little after 3.

She's planning to stay home from work tomorrow, and doesn't usually work on Fridays anyway. Monday we have an appointment with the oncologist. (That's another wrinkle: The oncologist we've been seeing for 15 years is on leave, so we'll be dealing with somebody we don't know.) The biopsy results may or may not be available by then, but we'll talk about possibilities and treatments.

Offers to help are pouring in -- as they did in 1996 and 2003 -- but so far there isn't much to do. We're planning a lazy weekend.

 

Deb Gets Biopsy Wednesday

Friends,

I'm writing to share with you a little information and a lot of uncertainty.

Deb is having a biopsy on her liver on Wednesday morning at the Beth Israel Deaconess hospital in Boston. It's an outpatient procedure and we expect to be home Wednesday night. The results won't be known for several days, probably not until after the weekend.

This is happening because she had her regularly scheduled CT scan last Tuesday. All along, there have been small lesions in her liver, which the doctors did not regard as unusual. I have imagined them as the internal-organ equivalent of pimples or warts -- blemishes most people have and don't worry about. In this scan, one of them was suddenly three times larger than it had been six months before. That's what they want to grab a piece of and analyze.

It's done by sticking a needle into her liver, guided by ultrasound imaging.

The results of this could be anything. There are some harmless explanations. Or it could be a recurrence of the breast cancer she had in 1996 or the GIST cancer she had in 2003. (The GIST was peeled away from the outside of the liver, and that was where we were most worried about recurrences then.) It could even be something new -- a person who has had two completely independent cancers can't be all that surprised to see a third.

We are trying to maintain a general awareness of the gravity of the situation while not focusing on the specific scenarios. We'll know a lot more in a week or so, and we'll make a more detailed plan then.

If not for the CT scan, we would have no reason to think anything is wrong. She has no worrisome symptoms and her general energy and mood has been slightly better than usual lately.

When we know something more definite, I'll pass it on as quickly as I can.

The Story So Far

I'm Doug Muder. Deb Bodeau is my wife. We're in our 50s and have been married since 1984. We're the kind of couple who finish each other's sentences and give a significant amount of thought each day to the question of how to make each other happy.

Deb was diagnosed with breast cancer in 1996. It was a harrowing experience, with nine months of really intense treatment. I thought she would die; she thought she would live. I was happy to be wrong.

In 2003 she had a completely different cancer. Even the surgeon had trouble figuring out what kind of tumor it was, and I was once again pretty sure she was dying until a few days later when the pathologist identified it as a gastro-intestinal stromal tumor (GIST) that would respond to the new miracle drug Gleevec.

Return to normal. Eight years go by.

Last week the semi-annual CT scan found something in her liver. We're having it biopsied the day after tomorrow.

For the earlier cancers, I sent news via email to our friends and relatives, and collected my emails on a web page. They make a compelling story. I sometimes get email from strangers who are dealing with their own (or their spouse's) health problems.

I'm still sending the emails, but it seems obvious now that these belong on a blog rather than a 1990s-style web page.

The update that's missing from the web page is from last fall -- I didn't write one. I had stopped worrying about the semi-annual CT scans and assumed everyone else had too. This time, I wasn't happy to be wrong.