Happy: A Quest for Life After Death

Wednesday, December 16, 2009

Blood sugar

Mat qualified for the clinical trial (YAY!), and his big first day was ... today!

And what a big day it was!

The clinical trial involves two drugs, one of which is taken in a pill (RAD 001, a name almost as good as 5-FU), once daily. The other is a drug that's injected subcutaneously twice daily (and has a much less interesting name -- SOM 230 or something). We both got to learn how to give the shots, first practicing on fake skin and then the real thing. Mat also learned how to test his blood sugar with a finger prick twice daily, because the shots can cause high blood sugar.

Mat got a shot, and then ... threw up. The shot is not supposed to cause nausea, and I really hope Mat doesn't have a repeat of this spring's clinical trial, but we'll see. His evening shot is making him feel sick as I write this. Dang.

As bad as throwing up is, Mat's real fear about this clinical trial over the past week has been the possibility of high blood sugar. Mat feels like he doesn't deserve diabetes -- he doesn't even eat Twinkies! I've tried to explain that lots of people with all kinds of body types and eating habits have diabetes, but he does have a point -- isn't high blood sugar one thing too many?

I guess not, because within hours of taking the first shot, Mat tested his blood sugar level as instructed and had a reading well above normal. Not quite high enough to cause symptoms like fatigue and thirst, but too high to be healthy.

He talked to his doctor tonight, and it looks like he'll be starting treatment for high blood sugar in the next day or two. Steroids, perhaps, plus a Twinkie?

Sunday, December 06, 2009


It's hard to know where to begin when you haven't blogged for more than a MONTH. Sorry about that.

Mat completed the round of radiation for the lump in his chest. The daily appointments were a bit too early in the morning for Mat, who likes to arise at the crack of noon, and the regular slog to MGH was tiring for him, but he made it. Even three weeks after radiation has ended, the lump continues to shrink, and we're hoping it will soon be a distant memory.

We were caught off guard in the middle of the month when Mat's doctor suggested he start a new clinical trial. (Why does anything still surprise us at this point? Because we are creatures of habit, and we fear change.)

My first reaction: you've got to be kidding me. The clinical trial Mat tried this spring was a disaster. He was sick a lot of the time and spent the rest of the time being rehydrated at the hospital. His association with the drug and throwing up became so ingrained that he sometimes threw up in anticipation of the weekly dose.

After the idea of a new clinical trial settled in for awhile, it started to feel better. There are some pretty good indications that the 5-FU has done all it can for Mat, and it's time to look for something else. With the 5-FU being our metaphorical scrape at the bottom of the barrel, a month ago I would have said there is nothing else.

No more drugs for Mat to try.

No soup for you. (We just finished watching all nine seasons of Seinfeld -- could you tell?)

Now it looks like there's something else to try. It is not lost on me that this may be the answer to many many people's prayers. There is one opening in the trial right now, and it was offered to Mat.

On top of that, Mat's doctor was visibly excited about this new drug. It's reported to have milder side effects than the 5-FU and work in similar ways to drugs that have worked for Mat in the past.

The hard part has been waiting. Mat had to wait several weeks after his last radiation treatment before starting the clinical trial, so since about mid-November has been off chemo.

That kind of break was welcome a few months ago, but at this point of increasingly rapid cancer growth, it scares us.

The waiting is almost over. Mat will spend Wednesday at MGH getting various scans and blood tests to see if he qualifies for the clinical trial. (Mat's doctor expects that he will. I am trying unsuccessfully not to get my hopes up and will be crushed if he doesn't qualify.)

If he does qualify, Mat will start the trial a week from Wednesday.

Keep the prayers coming!

Saturday, October 31, 2009

I Spoke Too Soon

Not 45 seconds after the side effects of radiation started to subside, Mat got a dose of bad news to go with his biweekly round of chemo.

A lump (the technical term for tumor) has been lurking on Mat's first rib for at least several months now. This fact didn't really hit home until a week or so ago, when it started growing at such a rate that we're now busily trying to select a name for it. Three weeks ago it existed only on the pretty picture of Mat's skinny body on Dr. Ryan's computer; today it's the size of a LEMON.

Clearly, the 5-FU (chemo) is getting the stuffing knocked out of it, at least by the bone-related tumors (first the hip and now the rib). We're hoping that it's still holding its own in the soft-tissue tumors (liver, abdomen, lungs, etc.), but can't even really consider the possibility that it's not, so we'll move on from that topic right now.

So it's back to radiation, this time for probably three weeks. The staff at MGH is now constructing a computer model of the upper left section of Mat's body that will ideally help them avoid radiating his lungs while they're treating the tumor. Things like lungs react to radiation like hot dogs in a microwave. In other words, they don't like it.

This next phase of the wonderful adventure that is cancer should start Wednesday or thereabouts. Stay tuned for the next episode.

Tuesday, October 27, 2009

Positively radiant

After two weeks of daily appointments, Mat is DONE with radiation. He's very happy to be able to resume his usual schedule of waking at the crack of noon (or 2 p.m., or 3 p.m.) and is catching up on his sleep.

The radiation has definitely reduced the pain in Mat's hip -- he's walking much better now than he was a couple of weeks ago. Apparently radiation continues to work for awhile after the treatments stop, so we're optimistic that the pain will be completely gone in a week or so. We're also optimistic that the side effects of radiation (which are ... unpleasant) will also be gone in a week or so. (Mat did go a bit gray at times, although he never looked as bad as our Halloween vampire.)

We received more offers of help for driving Mat to appointments than we could use (we were showered with more blessings than we had room to receive!). All the help made life much simpler for all of us.

In the meantime, we're looking forward to Halloween. Although we have some variety of super hero at our house almost every day, it's still nice to have an official excuse to dress up. And who doesn't need a super hero? (Or a vampire, for that matter?)

Wednesday, October 07, 2009

What a day dad had

It's 11:34 p.m., so I'll make this short and sweet.

Mat has been having difficulty walking and sitting -- two fairly basic life activities -- for about a month. His hip hurts. He hasn't been out playing basketball, and that roller-blading fiasco happened back in July, so it must be ... cancer.

Mat mentioned it to Dr. Ryan, who saw a spot on the latest CT scan in Mat's right hip that could account for the pain. He sent Mat off for a bone scan on Monday just to be sure the spot he saw wasn't scar tissue from an old injury, and we got the results today.

It is cancer, but it's curable. Well, not the whole thing, just the bits in his hip. Dang.

Apparently cancer cells that have taken up residence in bones respond quite well to radiation, so a few radiation treatments -- Mat's first -- and the pain should go away. Wow. If only all of life were so easy.

We went directly from Dr. Ryan to the basement of MGH to meet a radiation oncologist. Signed a few consent forms, just had time for lunch at Anna's Taqueria, and were back for radiation simulation (they figure out exactly where to aim the radiation) and the first treatment in the afternoon. It made for a long day, but the prospect of putting a spring back in Mat's step helped.

Nine more treatments from now (one every weekday), and Mat's hip should be feeling much, much better. The downside is some fatigue (of course), and the logistical headache of a shlep to MGH every day for the next two weeks. (We're currently recruiting volunteer drivers!)

Oh, and Mat may have some tightness in the hip joint down the road -- five or ten years from now.

I say with all sincerity that I hope Mat's hip hurts like hell five or ten years from now.

Wednesday, September 16, 2009


We saw Dr. Ryan today, to get results from Mat's latest CT scans. Dr. Ryan was "very happy" with the results. The tumors have shrunk, the chemo is still working, and we have a "free pass" for the next two months, until Mat's next set of scans sometime in late November or early December.

What's a free pass? A nice, predictable life. Chemo every other Wednesday, a bit more fatigue than usual for a few days after that, and then a week and a half or so to help the kids with homework, watch their soccer games, go to the park, and play Legos with them.

In other words, all the good stuff.

Wednesday, September 09, 2009

Sleeping Beauty, Part II

Mat was up to his old tricks again recently. A week or so ago, he slept 18 hours. A remaining six-hour day consists of getting up in the mid-afternoon for lunch, going down for a nap shortly thereafter, and then getting up again in time for dinner, the boys' bedtime routine, and a little TV.

I thought he was tired from our trip to San Diego, but then he slept all day Saturday, and Sunday, and Monday .... Finally, on Wednesday, Mat talked to his doctor about it, who thought it was probably the pain meds again. He had already cut his dose by 25 percent in early August because the pain medication seemed to be making him sleepy. That went off without a hitch. This time, the goal is to wean Mat off the medication entirely, in two or three steps.

This latest attempt to reduce Mat's dose has not gone so smoothly. The drug is more --much more -- potent than morphine, and more addictive than heroin. I guess it's not surprising that Mat is going through withdrawal. He's nauseated, jittery, dizzy, in a constant state of craving, and, yes, in pain.

I've always cast a skeptical eye on concerns about addiction to pain medication for terminally ill patients. I've seen first hand that good pain management has a huge impact on quality of life.

What do I think now? I'd still argue for the pain management. But ask me again in a week or so.

Monday, August 31, 2009

The Gift of Summer

I hate to be the one to break it to you, but summer's pretty much over here in Boston. The late afternoons are crisp, the nights are cool, and the school supply shopping is done (thanks Demetra!). Now all that's left to do is to sharpen 48 brand-new No. 2 pencils. (Good thing school doesn't start in Arlington until September 10.)

This spring, I spent my emotional energy preparing to spend my summer watching Mat's decline. We planned a low-energy trip to the Cape -- although I put our chance of having to cancel at 50 percent. A more ambitious vacation involving an exhausting plane flight was out of the question. Other than that, we would stay home and take what we were given.

We were given an unexpected gift.

In early summer, we learned that Mat's chemo, 5FU, had reduced the size of his tumors. The smaller tumor mass soon made him feel better -- a lot better. Mat was able to cut back on pain meds, digest food even without the "help" of the drug that also caused convulsions, and cut back on Ritalin. I haven't been to the pharmacy in weeks.

Even better, Mat has been himself. If you saw him this spring and again this summer, you know what I mean. He cracked jokes, went to the pool with the kids (sometimes daily), went to Red Sox games, went to the beach, and obsessively fidgeted with his iPod touch (a birthday present). (Mat even went roller-blading with us one hot Saturday afternoon, but we were a bit presumptuous there. What a disaster.)

By mid-July, we felt so confident about Mat's health that we planned a week-long trip to San Diego for late August (thanks Brandon and Amanda!). We went to the beach, Legoland, the famous San Diego Zoo, Legoland, caught up with friends we've seen only rarely in the last 10 years, went to Legoland, spent hours at the pool with cousins, and went to Legoland. Mat's favorite part about the trip was getting to skip a chemo treatment. (I haven't asked him, but I'm sure his least favorite part was the woman on the plane next to him (not me!) who reapplied her smelly perfume halfway through the six-hour flight.

Mat is slightly overdue for another MRI, which I'm sure will be scheduled when he goes to MGH for chemo on Wednesday. I, for one, am happy for the delay. I've spent my emotional energy this summer just ... enjoying summer. It feels like another round of MRI results will truly signal the end of this summer, and of this gift.

Saturday, August 01, 2009

Sleeping Beauty

Mat is a champion sleeper. Ever since I've known him, he's been able to sleep any time, any place. Having cancer has introduced a bit of insomnia (anxiety is not all that sleep-inducing), but generally has made him tired. So he sleeps a lot. Here's a typical schedule: arise with the early birds at 10 a.m., nap from about 3-6 p.m., retire at 11 p.m. Roughly 14 hours a day.

A couple of weeks ago, he topped even that. Sunday night, he dropped off around 11 p.m. as usual, and then woke up the next day at 3 p.m. All 14 hours in one stretch. And then he was still tired. Mat dragged himself around for a couple of hours and went to bed early. Monday night was about the same.

We were both pretty worried about it. This kind of fatigue could mean bigger tumors in the liver, making for poorer liver function. We entertained ourselves with this and several other possible (and impossible, I'm sure) scenarios until Wednesday.

During a long conversation between Mat and his palliative care doctor on Wednesday, it came out that Mat has been treating his right shoulder, which is a bit sore ever since the port was implanted, with a heating pad. The patch on his arm that delivers his pain medicine through his skin was on the same arm. The dose is regulated by body temperature, so Mat is very careful not to sit in the sun too long, or he could OD. It didn't, however, occur to us that the heating pad would do the same thing.

So basically Mat overdosed on narcotics and we're lucky he didn't quit breathing.

In more positive news, the effects of the Reglan (convulsions, jumpiness, etc.) are mostly gone.

Since recovering from the pain patch incident and the side effects of Reglan, Mat has been feeling better than he has for a long time. He felt well enough this week that he took the subway to his office by himself to catch up with friends from work, who threw him a surprise party. And not just any party -- a pie party. And not just any pie party -- a Petsi pie party. And he brought some home. Life really is good.

Tuesday, July 14, 2009

Tardive Dyskinesia

Here's your vocabulary word of the day: Tardive Dyskinesia. Say it slowly with me: Tar-dive Dys-kin-e-sia.

Tardive Dyskinesia is "a neurological disorder that consists of potentially irreversible, involuntary movements of the tongue, mouth, face, lips, and sometimes the arms, legs, and trunk."

What Mat has.

Mat started taking a drug called Reglan about a year ago to help him digest food faster after tumor growth caused a partial stomach obstruction. It helped a lot. He had been throwing up regularly, and the Reglan helped food go through his system faster.

But ... apparently the drug is only approved for short-term use, meaning 4 to 12 weeks. And almost a third of people who use it longer than that develop Tardive Dyskinesia. I wish someone had given us a heads-up about that.

For awhile Mat had been having an unpleasant sensation of being uncomfortable in his body -- wanting to crawl out of his body. His muscles would involuntarily twitch. He couldn't quite put a finger on it, though, and ignored it for awhile.

Eventually Mat had a response that seemed like seizures. Intermittently, his arms and legs convulsed for several minutes at a time. It was a little scary, to say the least. He called the doctor (actually, I called, because Mat didn't have enough control of his hands and fingers at the time) who suspected Reglan.

That was a couple of weeks ago. Since then, Mat has gradually cut his dose from eight pills a day to one only as necessary (every few days). He hasn't had a repeat of the bizarre seizure-like experience, and other side effects are mostly gone. Until today, he had even been keeping his food down on the much-reduced dose of Reglan.

Feeling bored? There's always something interesting going on at our house.

Tuesday, July 07, 2009

... and then Ian stole home

Ian and I played baseball with the Red Sox last night at Fenway Park.

We got four field passes to yesterday's game against the Oakland A's, so we showed up three hours early to stand on the field and watch batting practice. We watched the players warm up from a few feet away -- David Ortiz, Kevin Youklis, Jacoby Ellsbury, J.D. Drew, Jason Bay, Josh Beckett, etc. At one point Jason Varitek was doing warm-up swings right in front of us. I could almost have reached over and touched him. But then I would have been hit with the bat.

Seeing the players that close was almost like seeing a toy come to life. We've watched the Red Sox on TV and from distant bleacher seats (with one exception -- thanks Brandon!), and from there they look like miniatures. Up close, they're, well, people. Amazing. They are a bit more miniature than their statistics claim, however. (Julio Lugo is 6'1"? I don't think so.)

Early during practice, Nick Green threw us a ball, and of course we brought our mitts, so during a break in the action, Ian and I played a game of catch. So we didn't exactly play with the Red Sox (they were on the field and we were behind a rope at the edge of the field), and maybe a game of catch isn't quite baseball, but still. We waited patiently, but the Red Sox had their game faces on and did not volunteer to autograph the ball, even when I yelled "Go Beavs" at Jacoby Ellsbury (we have something in common -- we both attended Oregon State).

We were given the field passes by the Red Sox team dentist, who fortuitously is also Mat's dentist and our former bishop. Even more fortuitously, Mat broke a crown two weeks ago. It was a rare visit to the dentist -- Mat has not been terribly concerned about the longevity of his teeth lately. So the next time you break a crown, remember: it could be your lucky day.

After Red Sox batting practice, we sat near the Green Monster and watched the A's warm up. Now I know why everyone wants to sit there. A dozen balls must have been hit there, and a few more were tossed.

I have to say that even though we had great seats (right behind John Smoltz's family), the game was a bit anticlimactic. The Red Sox made some great plays, but lost 0-6. The highlight of the day was definitely the game of catch with Ian.

Oh yeah, I did eventually manage to meet Jacoby Ellsbury and get his autograph on that baseball. That part of the day was pretty good too.

Friday, June 26, 2009

Happy Dance

As usual, Dr. Ryan didn't waste a second when he came into the exam room to give Mat his MRI results this week. He knows his patients have been at the edge of their seats for the last few days, and is kind enough to get out the news quickly, whether it's good or bad.

This time, it was "Hey, pretty good news. There's been some shrinkage in the tumors."

What? Pretty good news? This is the best news I've heard in more than two years.

That old standby from the '60s that sounds like profanity, 5FU, is working. Dr. Ryan earlier gave us the odds of this drug working as about one in 20. A five percent chance. No other drug -- torisel, sutent, avastin, AV-412 -- has actually shrunk the tumors. A couple of them have prevented some growth, but this drug is more ambitious.

The largest tumor, in Mat's liver, is about two centimeters smaller, and others in the lymph nodes and chest are also a bit smaller. (We don't know what the one on his ribs is doing -- his ribs are busy remodeling around the tumor, which is kind of like adding an extra bedroom made of bone.)

During the conversation with Dr. Ryan, which also covered the topics of the vampire series Twilight and travel to Bermuda, I had a distinct sensation of becoming much, much lighter. I had to check to be sure I wasn't floating up to the ceiling.

This is definitely a solid base hit, now we're hoping for a double. Heck, forget the double, we're giddy with visions of a possible extra year or more. A home run.

Why do I always feel like going to a baseball game after these appointments?

Friday, June 05, 2009

Pie Friday

I sometimes think wistfully about Pie Friday.

The blessed day, started by a coworker with a passion for pie, was observed for a few blissful months in my office. Nearly every Friday afternoon, someone would zip over to Petsi Pies (Beacon Street, Somerville) and bring back one ... or two ... or three pies and then send out an email alerting staff to their arrival. Then we'd all stand around in the hallway eating pie. The big filing cabinets there were a good stand-in for a sideboard, useful for slicing, serving, and admiring the pie.

Apple pie ... tart cherry crumb ... Key lime ... mixed berry ... chocolate banana cream pie and -- sorry mom -- bourbon chocolate pecan.

Of course the pies could never be divided perfectly evenly, and I always had the sense that a few of us lingered well past polishing off our pieces, hoping for a few bites of that last piece. Or maybe it was just me.

Sadly, the coworker who started Pie Friday left and the tradition died. (Her going-away party, however, was quite a smorgasbord.)

Lucky for me I have wonderful friends, one of whom brought a chocolate banana cream pie last week, and another of whom brought a Key lime pie this week. Yep, Petsi Pies.

My very own personal Pie Friday.

(OK, I did share with Mat, but it was with a certain degree of reluctance. I knew Mat liked Key lime, but since WHEN does Mat like chocolate?)

Sunday, May 24, 2009

Introducing Mat: Cylon Model #13

Mat has finished the second treatment of 5-FU, with no immediate horrible side effects. It may be the most tolerable chemo he's tried yet (is this like being the skinniest person at fat camp?).

The main side effect, and one that the drug's literature didn't mention, is that Mat feels like a Cylon. We've been watching the remake of the series Battlestar Galactica, a phrase I never thought I'd write. The show features Cylons, robots that eventually evolve to become nearly indistinguishable from humans, and who then destroy almost all of human civilization.

Mat is also nearly indistinguishable from a human. The key to Cylon detection in his case is to note that every other Wednesday, he goes to MGH to be hooked up to 5-FU via his port. Mat then carries an infusion machine around with him in a stylish man-purse for the next two days until I draw on my in-depth training as a nurse (10 minutes of instruction at MGH) and unhook him on Friday.

Here's where the Cylon detection gets even easier: every three minutes, Mat's infusion machine makes a whirring noise as more drug is pumped in through the port. After a couple of nights of being driven to distraction by the noise, I think we've both accepted it and and the noise has become quite soothing. Being a Cylon isn't so bad after all.

Mat does not really like lugging around the infusion machine -- it weighs at least five or six pounds -- but I'm encouraging him to think of it as a pet. A black, rectangular, whirring pet. I'm not really sure he's bought into that idea. What the frak? I can't imagine why not.

Wednesday, April 29, 2009

Salvation in a Sausage

Sometimes everything is black.

There is nothing good about life, I rage in my head (and occasionally out of my head) as I mechanically go about my sometimes overwhelming list of chores. I felt that way a couple of weeks ago while I was making dinner.

Then I took a bite. Italian sausage with peppers and onions sauteed in a splash of balsamic vinegar (Mat's inspiration) on a lightly toasted split-top roll with ketchup and mustard. Even better than at Fenway.

The spicy-sweet snap reminds me that there are good things about life, especially when those Italian sausages were delivered to my doorstep in a white cooler from Omaha Steaks, one of the dozens of examples of untiring friends who take pains to brighten our days. Suddenly things are not quite so black.

Sometimes there is a little bit of salvation in a sausage.

(And for the record, I feel the same way about those dark chocolate almonds.)

Sunday, April 26, 2009

Power Port

Mat took the first step on Thursday toward a new bionic body with a Power Port. The titanium device was implanted in his chest and will be used to receive infusions of chemo and/or fluids, and can also be used to draw blood. I'm sure Mat would be cheering at the thought of NO MORE NEEDLE STICKS except that his shoulder and upper chest are quite sore.

He'll start his new chemo regimen, 5-FU (no, I didn't just say a dollar word), on Wednesday. He'll be hooked up to an infuser in the hospital, take it home with him to wear for the next 30 hours or so, and come back on Friday to have it unhooked. Friday is also when a nurse will teach me how to unhook Mat from the infuser at home, so that every chemo treatment doesn't require two trips to MGH.

Shouldn't I have a degree in nursing for this?

Disappointingly, the Power Port is actually not bionic, and no further steps toward a bionic body are planned. Over the summer, however, we seriously discussed the merits of Mat becoming a vampire (brought on by the Twilight series). I'm all for it, as long as Mat can remember not to eat our boys.

Sunday, April 12, 2009


While Mat was in the hospital, one of the residents came in to clarify his wishes about treatment.

"Are you a Do Not Resuscitate?" he said.

I was horrified. In the abstract, you might think a nice cardiac event could be an easy way out of a terminal illness. I might have thought that myself, before Mat's prognosis became, well, terminal. That was when Mat's cancer returned for a second time, in late August 2007.

Now, almost 20 months later, there have been a lot of really bad days, but there have been more -- not a lot more, but more -- days that were mostly good. And what if mostly good days only came along once a week? Once every two weeks? I suspect I still wouldn't want Mat to be a "Do Not Resuscitate." (I'm not completely sure how Mat feels about the once-every-two-weeks scenario, but I'm pretty sure we're on the same page about the other one.)

One of Mat's doctors told him in January that she couldn't tell him how much longer he had to live, but that it was months, not years. And furthermore, some of those months would be low quality. Even knowing that, would I want Mat's life to end months early because of a random glitch that resulted from a straightforward surgery to correct a bowel obstruction? We have two kids, ages 4 and almost 8. A few more months is a long, long time if you're four years old.

I've thought about living wills and advance directives for end-of-life care before. Mat and I both have a living will, written about fours years BC (before cancer). But I would guess that most people who think they know how they want to be taken care of near the end of their lives are wrong. I don't know if people can fully understand the implications of their directions until they've been there, or at least pretty close to there.

I've been pretty close to there, and now I know.

Saturday, April 11, 2009

Mat's home

Mat came home from the hospital on Wednesday afternoon, and he's much happier now that the pain in his stomach is gone. He must be on some kind of frequent-customer plan, because he was lucky enough to get a room in the Phillips House section of MGH again, with a great view of the Charles River and Cambridge. And, if you have good eyesight, even of our neighborhood.

Mat's recovery seems to be going well -- it's not as major a surgery as his previous two, and he's got even better pain meds now than before. (Don't believe in miracles? Let me introduce you to "the patch.") He does have yet another nice row of staples, closing up the six-inch incision, but those will come out soon.

It all still feels a bit surreal, but I've decided surreal is good. Sometimes a little distance between me and reality is just what I need.

In someone else's life, an emergency surgery like this might be the defining event of the year, or at least the highlight of the Christmas letter. In the life of the Burnett family, it feels more like a week-long inconvenience that is soon to be displaced by another crisis. Welcome to our world.

Friday, April 03, 2009

What just happened?

I'm the first to admit that life is not predictable. Plan a vacation for three months from now? Forget it. Make plans for next weekend? Maybe, but with a 50 percent chance of cancelling. This morning? We couldn't even plan our afternoon.

Mat woke up early this morning with a sharp pain in his stomach. Sound familiar? It should -- this is what started this whole cancer odyssey. He waited until 7 a.m., then we chucked the kids in the car so I could take him to see his doctor, who took one look at him and sent him to the infusion unit for IV pain meds and set him up for a 4 p.m. CT scan. (If anyone is keeping track, and I'm sure the health insurance company is, this is the fourth CT scan in about two months.)

He spent a full day being pretty miserable despite pain meds, and seemed to feel worse and worse as the day went on.

Finally, by 6 p.m. or so, Mat was checked into a hospital room for an overnight stay, and the CT scan results were back. A bowel obstruction in Mat's small intestine.

That's when my head started to spin. About 6:30 p.m. Dr. Tenabe, the same surgeon who performed Mat's liver resection two and a half years ago, came to talk about the possibility of surgery. By 8 p.m. Mat was being wheeled to the OR, and by 9:30 surgery was underway. Huh? You shot who in the what now? (Free "stupid cancer dot com" button to anyone who can identify that quote!)

Joe and Ellen came to keep me company in the family waiting room while I waited for news during the surgery, and we were just settling in with some snacks when Dr. Tenabe came in at 10:30 to report that the surgery was over and it went well. Some of Mat's small intestine had become adhered to scar tissue from a previous surgery, and then looped over itself, cutting off the blood supply and causing pain. Lots and lots of pain. Dr. Tenabe detached the small intestine, untangled it, and that was it.

Well, that's not quite it. Mat's got about a week-long stay in the hospital to look forward to, and then several weeks of recovering from surgery after that.

In other news, we found out Wednesday that there are no clinical trial options for Mat right now, so Mat was planning to start a new chemo drug, 5-FU, next Wednesday. Somehow I doubt he'll make that appointment.

See what happens when you try to plan ahead?

Friday, March 27, 2009

Stable Bad

He made it. Despite nausea and misery every week for eight weeks -- long after most other people would have dropped out of the clinical trial, according to the oncology nurse -- Mat finished the clinical trial drug cycle.

Unfortunately, AV-412 didn't quite match Mat's level of commitment. He had a CT scan on Tuesday, and got the results Wednesday. The cancer was technically stable over the eight weeks, but according to Dr. Ryan, there's stable-good, and stable-bad.

The results showed stable-bad. Although most of Mat's tumors (lungs, liver, and lymph nodes) stayed about the same size, there was noticeable growth in one in particular (a bone tumor) that led Dr. Ryan to think Mat should be in the market for a new drug. Dr. Ryan is looking into other clinical trial options, or Mat may revisit a drug he tried in 2006.

That was a combination of two drugs: adriamycin and streptozocin. Infusions every day for five days, and then a week off. That treatment was hard to tolerate, but not as hard as AV-412. We have AV-412 to thank for redefining our expectations.

And as I often say, it's all about expectations.

Saturday, March 14, 2009

It's working!

Mat's body is a lot smarter than he is. After two weeks of nausea and hospital visits for hydration, Mat showed up at MGH for clinical trial week #5. He swallowed his dose of AV-412 (the catchy name for the chemo) ... and promptly threw up. Since the drug didn't "stick," he got an impromptu vacation from chemo for the week.

That combined with the two prior weeks of misery convinced his doctor to get an early CT scan to see if it was worth it to continue this fun-fest. The scan results showed that the cancer hasn't growth in the last four weeks, which is pretty good for being on the chemo such a short time.

Mat was able to spend the rest of his chemo vacation week resting, and week #6 has gone better. Despite being on six (count 'em) different drugs to control nausea, chemo day (Monday) was every bit as miserable as all the other chemo days. The improvement was on Tuesday, when he spent a day at MGH getting IV fluids and sleeping to make up for the day before. Mat was also scheduled for fluids on Thursday, but felt well enough to skip that appointment.

We do spend a lot of time thinking about the trade-off of quality of life for quantity of life, and have been very close to throwing in the towel on AV-412 several times in the last few weeks. But if the misery is mostly confined to Monday and Tuesday, well, it's still not a picnic in the park, but maybe we can have a little quality and quantity.

Some people are so hard to please.

Sunday, February 22, 2009

Hotel MGH

The clinical trial so far is ... a mixed bag. The main side effects are nausea, nausea, and more nausea.

The first week, premedicated with an anti-nausea drug, everything went fine ... until 90 minutes post-dose, when Mat threw up. More nausea followed in the next two days, but no action.

The next week went better. Mat was premedicated with TWO anti-nausea drugs, and everything stayed in place.

Then last Tuesday (week 3), despite the premedication with two anti-nausea drugs, the 90-minute mark hit and Mat hit the infusion room sink. And again every 45 minutes or so for the remainder of the day. Wednesday was also misery, and Thursday wasn't looking any better, so Mat called his doctor who ultimately checked him into the hospital for an overnight stay.

Some IV fluids seemed to help a lot -- it's tough to stay hydrated when you can't keep down water. I brought Mat home in time for dinner on Friday, and after a weekend of resting, he's gearing up for dose number 4.

It's always good to have something to look forward to.

Saturday, January 31, 2009

He's in!

Mat found out on Friday that after his battery of tests on Wednesday and Thursday, he qualified for the clinical trial. It was no small feat -- we got very excited about a clinical trial last July, only to find out Mat couldn't participate because of a marker in his blood related to heart function. Apparently the researchers on this trial don't care as much about his heart, which is fine with us.

If you hadn't guessed, it's very scary to have a life-threatening illness that is not being treated because the treatment options are exhausted. Hope does sometimes come in a bottle (in this case a bottle of pills), and being without a bottle can leave one feeling rather exposed.

Treatment starts on Tuesday with an 11-hour stay at MGH for poking, prodding, and testing. One negative of a clinical trial: it's research for the greater good (not necessarily the patient's good), so there are many more tests. One major positive of this particular trial: the drug comes in a PILL! No infusions, just weekly trips to MGH to be observed actually taking the pill (and then be observed for sometime afterward).

This is a Phase 1 clinical trial, which means the drug is fresh off the "mouse model" it was initially tested on. (Mat is hoping he doesn't sprout a tail, but quite frankly it's preferable to the side effects of some of the other drugs he's taken.) The goal of the trial is primarily to study the drug's side effects at various doses. People who join the study early are given low doses -- doses that probably have minimal side effects, but that also may be too low to block cancer growth. Mat is joining the study in the sixth round, which may mean a high enough dose to have some effect.

To recap: Nearly four years, two major surgeries, and four different chemotherapy regimens later, Mat is starting on a fifth chemotherapy regimen.

Fifth time's a charm? We hope so.

Wednesday, January 28, 2009

Fingers, toes, arms, and legs crossed

Mat met with Dr. Dave today to talk about clinical trial options, and it looks like there may be a match! It's a drug that works to block several of the pathways tumor cells use to grow like kudzu, rather than just one of them. It sounds like a good plan -- we hope Mat will have a chance to find out.

There's a round of tests to determine eligibility that will wrap up tomorrow afternoon, and by the end of the week, we should know whether Mat's eligible.

I'll keep you posted.

Monday, January 05, 2009

Mat and Steve Jobs

Important news flash: Steve Jobs (Apple CEO) today announced weight loss and a "hormone imbalance."

Mat and Steve Jobs have something in common -- can you guess what it is? Nope, Mat is not also the CEO of Apple. Jobs also has neuroendocrine cancer. We hope he's really experiencing a "hormone imbalance," but my guess is his cancer has returned after a relatively lengthy remission (four years or so). If I had a NICKEL for every person who told me four years ago Mat was lucky because he had Steve Jobs' kind of cancer, and not some other kind, well, I would have about a dime. But I'd have to guess Mat doesn't feel lucky.

Also today, we met with Dr. Dave to review Mat's latest scans. The "shmutz" in the lungs from the previous scan are now actual, identifiable tumors. The growth from the last scan is very small, but important. It means the Torisel is no longer working, and Mat is back in the market for a new chemo regimen.

The list we had to work with last July, when Mat started on the Torisel, was pretty short. Now it's shorter. Somehow, with all of the oncological experience, insight, and wisdom we've amassed over the last four years, we have to decide whether Mat should start on a chemo combo of adriamycin and streptozocin (a drug combination that flattened him when he was healthier and had 20 more pounds on him), or try for a Phase I clinical trial.

All drugs now on the market started as Phase I clinical trials, but right now that option feels more like a step toward accepting that we might have reached the end of the medical rope than anything else.

The scan results notwithstanding, we still have things to be thankful for. Unlike Steve's tumors, Mat's are "nonfunctioning," meaning that they don't secrete hormones and make his body do weird unpleasant things; the tumor growth from the last scan was small; Mat's weight has been pretty stable for the last few months; and it's been a great four years.