Happy: A Quest for Life After Death

Wednesday, December 12, 2007

26 Days

The girls in our church youth group came to our house to rake leaves last Saturday. The help was definitely welcome – during my previous pathetic attempt to rake leaves earlier, I filled one bag. In my defense, I had “help” from a six- and a two-year-old.

The girls were much more efficient. They raked every last leaf within about an hour (in freezing wind), and just in time – it snowed the next day.

In the meantime, Mat was feeling well, so we spent an enjoyable morning taking the kids to get flu shots and then to McDonald’s to compensate for the shots.

Most days Mat feels pretty well, but after more than three weeks of taking Sutent daily, the effects seem to be accumulating. At his last check-up, Mat’s white blood cell counts were a little low, so we’re taking extra precautions (flu shots for the kids!). If they drop further, Dr. Dave might lower his dosage.

Mat’s been really tired this week, so we’re looking forward to this Saturday, when Mat starts a two-week break from his medication. It should mean he feels better for Christmas!

Sunday, November 18, 2007

Two Days Down ...

The Sutent (sunitinib) arrived in the mail on Tuesday -- all $5,500 worth. To cover the next month.

Co-pay: $50. Big sigh of relief.

Dr. Dave reported when we met with him on Friday that only a moderate amount of arm-twisting was required to get the insurance company to pay for it.

We also got the results from Mat's latest scan on Friday. The tumors in the liver are a bit larger -- about a centimeter. The lymph nodes next to the pancreas are also "involved," as are others in the abdominal cavity. (Don't you love medical euphemisms?)

Of course I wanted to hear the miracle speech: "Did someone give me the wrong scans?I've never seen anything like it! I just can't explain it, but the cancer is gone!"

It's going to be a good speech, so I can be patient.

In the meantime, the bottom line is that things are a little worse. Not a lot worse -- just enough worse to stop the watchful waiting and start the watchful pill-popping.

Mat started the Sutent on Saturday, and took a second pill today. So far, he says it makes him feel a little tired and down for a few hours, and then seems to wear off. He's tried taking the pills in the morning; now he's going to experiment with taking them at night in the hopes of sleeping through the side effects.

Who knows? Maybe they'll help him sleep better at night.

Now if they would just do something about his snoring ...

Thursday, November 08, 2007

So Far So Good

Mat submitted the sunitinib prescription, and it looks like it will go through. It required some extra involvement from Dr. Ryan because of the expense, but no flags raised yet about the FDA approval issue.

Small sigh of relief today, and I'm looking forward to a big sigh of relief when the pills arrive in the mail next week.

Wednesday, November 07, 2007

The Watchful Waiting Is Over

A clinical trial may not be in Mat's future after all.

We met with Dr. Ryan today, who said that Mat doesn't qualify for either of the clinical trials he thought he might be a candidate for because of drugs he took last summer.

I suspected that might be the case. During one of my sleepless nights spent surfing clinicaltrials.gov, I decided to go for extra brain damage and focused on exclusion criteria. All of the trials of drugs that act as VEGF inhibitors (like the ones Dave was looking into for Mat) exclude people with Mat's treatment resume.

But ... there is an alternative!

Another new drug, sunitinib, used primarily to treat kidney cancer, has also been shown to shrink tumors in some people with pancreatic endocrine tumors. It's a relatively simple treatment -- there are no infusions or hospital visits, just take a pill every day for 28 days, rest for 14 days, then start again. Side effects are limited compared to chemotherapy (primarily fatigue), so it should be a relatively pleasant experience.


There is a catch. The drug isn't specifically FDA-approved for pancreatic endocrine tumors, and probably never will be. The problem? It's an orphan disease. There are not enough people with this type of cancer to make it worth the drug company's effort to get the approval.

And ... insurance companies don't like to (and don't have to) pay for drugs that are not specifically approved for the patient's disease. So -- insurance company, stop reading here -- the plan is to submit the prescription to be filled and hope the insurance company doesn't have a system to catch and reject it.

Failing that, we try an appeal to the insurance company, then the drug company, then the bank for a second mortgage on the house.

Keep your fingers crossed for Plan A.

Saturday, October 27, 2007

Game 2

When Mat asked on Tuesday last week if he could buy a ticket to the World Series, how could I say no? These are the times to seize the day.

Mat's friend Brandon bought tickets on eBay to game 2 on Thursday. I won't tell you how much he paid, but we sold our 16-year old Saab this morning ... and didn't raise quite enough money to cover one of the two tickets.

I was skeptical about buying World Series tickets on eBay -- would they actually get the tickets? Would they be legit? They did get the tickets, but the seller failed to mention one critical point: the obstructed view.

The view was so obstructed it was comical -- only at Fenway would this seat actually be sold. Fortunately, there was standing room in front of the green girder that completely blocked the view of one of the two seats, where as long as they escaped the notice of security guards, they had a great view of the field.

So there's not too much cause for pity -- it was a great game, the Red Sox won, and it was the World Series!

Mat would, however, like me to point out that Brandon's Harvard MBA and career buying and selling companies for a living were insufficient credentials to complete an entirely satisfactory baseball ticket purchase.

Oh well. Apparently we would have had to sell two Saabs to cover the price of an unobstructed view.

Wednesday, October 17, 2007

The Brown Journal

So there was one downside to the trip to China -- I lost my journal. You should know that this was not just any journal, it was the cancer journal, the one I've been keeping for the last year and a half.

I was devastated when I unpacked my carry-on bag in the hotel room and realized I didn't have it. I had left it on the plane when I landed in Shanghai.

Since we found out Mat's cancer is back (round 3), I have struggled to recall the faith, hope, and energy that I seemed to have at my disposal last summer, during round 2. I was sure that all of these were in my journal.

I cried for a long time.

Then I tried everything I could think of to get it back. A Chinese-speaking coworker of Mat's called the airport and was passed to several people in various airport and airline lost and found departments, but didn't have any luck.

The following week, on my way back to the U.S. I spoke to several people to ask for help, with no luck. During my layover in Chicago, I even recognized a steward from my flight to Shanghai the previous week, and stopped him to ask if he had seen my journal while cleaning the plane. Mat left Shanghai a day after I did, and spent several hours at the Shanghai airport trying to track down my journal in person, also to no avail. Everyone was either unhelpful or didn't speak English well enough to understand.

And then my mom took over. I told her the sad story, and she began calling Shanghai. She also spoke to several different people in several different departments before finding Mason, a very helpful, very polite airport agent who spoke very good English.

He had the journal.

Mason couldn't send it to the U.S., but a colleague of his delivered the journal to Mat's office in Hangzhou the following week. Mat's coworker sent it to him via interoffice mail, and I had it back in my hands last Friday.

Do I believe in miracles?

Actually, I do.

Monday, October 08, 2007

Watchful Waiting

Mat had expected to start on the miracle (fingers crossed) clinical trial drug last week, but learned on Tuesday that the trial is being postponed by a month. The trial, being conducted by Dr. Matthew Kulke of the Dara-Farber Cancer Institute here in Boston is still wending its way through the approval process.

Dr. Dave (Ryan) assures us that the clinical trial is worth waiting for, so we're now in a period of "watchful waiting." This is the hugely anxiety-provoking state of doing nothing about something that demands attention. That's the waiting part. The watchful part is monitoring Mat to make sure he doesn't start losing weight, becoming unusually fatigued, and having (even more) alarming images show up in his MRIs.

Dr. Dave has persuaded us not to treat our "distress" (a technical term, and no, I'm not kidding) with chemotherapy. Apparently this is a very normal response, and one I can sympathize with.

Mat is on board with the watchful waiting, but I'm not so calm.

Where's my chemo?

Monday, October 01, 2007

Hangin' in Hangzhou

Mat's work occasionally takes him to Hangzhou in China (he's been once before), where his company has an office. With Round 3 of cancer getting started, I decided there's no time like the present. With less than three weeks to go before his long-planned trip, I bought my ticket and applied for a visa.

It was ... an interesting vacation. A little more stressful than relaxing, but a great trip nonetheless. Mat took a Friday off from working to spend the day sightseeing with me, and he also had a free weekend that we spent with Mat's friends from the office and at company events.

Hangzhou is a beautiful city -- largely unknown to Americans, but with a population of about 6.5 million. We stayed in a nice hotel on a beautiful lake, where we spent every evening walking and watching dragon boats, karaoke, and concerts. Mat's co-workers took very good care of us. They found an English-speaking guide to show us around on Friday, spent the day with us in a touristy shopping district on Saturday, and included us in their Moon Festival celebration on Sunday.

Most importantly, the trip was a great diversion. There's nothing quite like a fresh-cooked chicken head in the middle of your plate to distract you from life's other problems.

Monday, September 10, 2007

Labor Day weekend in Maine

We spent Labor Day weekend in Maine, on the site where Mat's brothers Zach and Seth are building a house. It was idyllic except for the bit about being stressed out of my mind. We camped next to a lake, where we went kayaking (me and Ian), wakeboarding (Mat), and surfboarding (Mat, Ian, and Kimberly!).

We didn't get too close to nature -- all the boys were in heaven on go-carts, a four-wheeler, construction equipment (telehandler, skid-loader, excavator, and cat) AND ... a big pile of dirt.

They were dirty but happy.

Even with the post-doctor visit angst, it was a good weekend. We spent time with family (now I can tell the difference between my nephews, twins Isaac and Andrew!), met some new friends (fellow campers), and took a break from life.

Monday, September 03, 2007

Go Glaxo!

It's been a year since Mat had surgery to remove a dozen or so tumors from his liver. We were hoping the surgery would cure him from cancer, but we got some disappointing news on Friday (disappointing being the understatement of the century).

His lastest CT scans showed some small tumors in his liver, plus indications of cancer in his lymph system. Another surgery seems to be out of the question, and Mat exhausted the standard chemotherapy treatments last summer, which didn't work very well.

All is not lost, however! There is a clinical trial starting in a month or so that Mat's oncologist, Dr. "call me Dave" Ryan, thinks he may be a good candidate for. I have remarkably low listening comprehension skills during these visits with Dave, so I don't know much about it other than it's a targeted therapy (meaning limited side effects, among other things) in the pipeline at GlaxoSmithKline.

Here's one for the pharmaceutical industry: Go Glaxo!

Monday, June 04, 2007

"THAT was a NICE fluke!"

Ian's recent interest in whales, along with Colin's long-standing love of beluga whales, inspired us to spend Memorial Day on a 4-hour whale watch.

We got up early to drive to Gloucester, MA where we had reservations with Captain Bill's Whale Watch at 10:30. After forking over nearly $100 (after AAA discount), we boarded a boat without Captain Bill but with a naturalist from the Whale Center of New England, intern Laura, and Captain ... Bob.

A whale watch requires patience, something in short supply among the Burnett clan. Every five minutes Ian asked me, "When are we going to see whales?"

It turns out you have to get to Stellwagen Bank, an underwater plateau about 20 miles offshore from Gloucester, before you're likely to see any whales. The shallow (about 100 feet deep) and nutrient-rich water apparently make this a favorite feeding spot for humpbank, minke, and fin whales. The whales spend from May through October gorging in areas like Stellwagen Bank before heading to warmer waters where they like to mate ... but where there is no food.

Getting to Stellwagen Bank takes an hour (was it only an hour?). But once we spotted the first whales, the trip was truly spectacular. We first saw some mothers with their calves -- one pair close enough to touch the boat (oops).

Every time one of the whales would dive down into the water for a mouthful of fish, the naturalist on board would give us a play-by-play: "Did you see the baleen? There's the fin ... oh, that's a NICE fluke!" Sometimes the whales didn't dive deep enough to show us their flukes (tail, photo above). Then the naturalist was disappointed: "Fluke? ... oh, not quite." She seemed to know almost all the whales we saw by the pattern on their fluke, and called them names like Grommet.

Colin, who insisted on being held almost the entire trip, would point every time he saw a whale and say, "Look!"

The last place we stopped was a virtual whale smorgasbord. We hardly knew which direction to look, since there was a pair off the port side of the boat, two groups of three or four off the bow, another pair off the starboard side, and several more farther off in the distance. The whales would sometimes dive into the water together, three or four at a time, coming up together. Other times they just floated, noses (do whales have noses?) well out of the water, for a minute or more at a time while some of the hundreds of birds swarming around, hoping for leftovers, sat on their heads.

About this time Ian started whining for pizza from the boat's snack bar.

OK, so maybe we should have waited a year, until Ian was older (a recurring theme in my life). But I thought it was great.

Sunday, March 18, 2007

You want funny? We've got funny

Mat and I developed a sudden interest in comedy shows and movies last summer, and found some good stuff (we think). In the market for a mood change? Maybe we can help. Here's a list of comedies we've seen recently and liked:

1. A Bit of Fry and Laurie
This obscure British comedy stars our favorite comic duo, Stephen Fry and Hugh Laurie. Laurie is now Dr. House on the TV show "House," which we like, but Laurie is even better in this series from early in his career. Not every skit is funny, but we watched some of them over, and over, and over ...

2. Arrested Development
It took me a couple of episodes to get into this now-defunct TV series, but once I was hooked I laughed non-stop. Just say the name of the family lawyer out loud several times: "Bob Lawblaw." Now say: "Bob Lawblaw's law blog."

3. The Office
Being the Anglophiles that we are, we saw the British version of this comedy, but I hear the American version is just as funny, and the characters are very similar.

4. Zoolander
Expect slapstick, put your brain on pause, and you'll laugh.

5. Jerry Seinfeld: "I'm Telling You For the Last Time"
It's Seinfeld. What else is there to say?

6. There's Something About Mary
A little crude, a little juvenile, but a good distraction.

7. 50 First Dates
Sweet, heart-warming, and a couple of laugh-out-loud funny scenes.

8. Fever Pitch
Cute, occasionally annoying, but features the Red Sox!

9. Dumb and Dumber
Mat thinks this is one of the funnies movies ever made; I think it must be a guy thing.

10. The Life Aquatic With Steve Zissou
Mat: "I love it. Incredible movie." Kimberly: "So-so." You'll have to judge for yourself.

11. The Royal Tennenbaums
More Mat than Kimberly. Another judgment call you'll have to make for yourself.

12. Clueless
This was funnier 10 years ago, so if you're in your 20s, you're all set.

Our research into funny is ongoing, so if you've got suggestions, let us know! If you hated our list, keep it to yourself!

Tuesday, February 13, 2007

The Results Are In And ...

The scan is clean! Mat had a CT scan last Friday of his entire chest, and there are no signs of cancer anywhere.


Now we can go back to pretending like this never happened. Until about a month before the next scan. Try to be patient with us starting in late July, OK?

Wednesday, January 17, 2007

Happy New Year's

So I think I've been officially fired as a blogger. Sorry, Krista.

Mat's next round of tests is in February, which seemed comfortably distant in October and November. With only about four weeks to go, the February 9 test date is starting to feel oppressive. We'll get the results on February 15 -- and I promise to post them!

In the meantime, our New Year's letter (written by Mat) is a good summary of how we feel about the last year. I would have been more sappy ... but that's why I asked him to write it. Here it is:

Christmas/New Year letters are, as a general rule, light-hearted, optimistic, and grateful, often in a fluffy, lemon-scented sort of way. Although we would be amiss not to admit to brief periods of light-heartedness (singular vacation in Boca Raton with the Eastley-Ingersolls) and optimism (Dr. Tanabe’s competence with a scalpel inspires mountains of the stuff), the reader will likely have to settle for gratefulness. And be willing to settle for slightly less fluffy lemon-scented-ness than one may be accustomed to.

The year did start well, with dugout seats to the Red Sox season opener for Ian and Mat. Things went downhill rapidly, with multiple chemotherapy regimens that did little but prove definitively that Kimberly is, in fact, a saint and Mat does, after all, benefit at least slightly from a sparse amount of hair. Liver surgery/recovery could not be described as enjoyable for anyone involved, although it did serve as a vehicle for spending a considerable amount of time with our families. Kimberly’s mom was amazing (she really cleaned the garage?), especially in her diligent soup-preparation. She was given a good run for her money by Mat’s dad, who (with help from J.R. and Zach) re-roofed, insulated, sided, and painted our entire house (looks like new). Little Colin still frequently runs downstairs after his nap waving a screwdriver and looking for Grandpa Burnett.

All in all, we really can’t complain. We spent a lot of time together and with family members that we see much too infrequently. Ian loves kindergarten and has made lots of new friends. Aside from being quite the reader, he is hands-down the best skateboarder and the best bike-rider in his class. Colin talks and hops and plays his guitar (ukulele) with dad. We love our neighborhood and are in awe of Lamar, J.R., and Zach for their work on our house. Even Kimberly’s dream of a garage door opener that works is finally a reality.

Are there things we would change about 2006 if we could? Yes. Especially the kale, the product of Kimberly’s possibly misguided experiment with a community farm. We would definitely consume much less (if any) kale. Would we do it all over again next year if it meant being together? Definitely.

And we do try to be optimistic. We are quite sure that 2007 will represent a marked shift in the direction of lemon-scented-ness. We just hope that there will be fewer hospitals involved . . .

We hope that 2007 is a wonderful year for you and your family.
Mat, Kimberly, Ian and Colin