Happy: A Quest for Life After Death

Tuesday, December 02, 2008

I Really, Really Miss Utah

Utah is a lovely place. It has Zion's National Park, Bryce Canyon, Arches, Temple Square, and my favorite brother in it, just for starters. But I don't miss that Utah.

This spring, I asked Dr. Ryan: Let's say Mat's on a trip from California to New York (New York being a grassy cemetery with flowers and trees). How far along is he on this trip?

The answer: Utah. As long as Mat has energy and is keeping weight on, he's in Utah.

Ah, Utah.

Fast forward a few months, and Mat has lost almost 25 pounds and pops a double dose of speed twice a day in order to have a quarter of the energy of your average sloth.

I've a feeling we're not in Utah anymore.

I don't know where we are now -- I don't want to ask and I don't think Dr. Ryan could tell me anyway. I don't think it's Pennsylvania, but is it Kansas? Missouri? Illinois?

It's definitely not Utah.

We were hoping the Torisel might take Mat back to Utah, but the last scan showed the the chemo is not shrinking the tumors, as we had hoped, but is keeping them from growing.

Our Utah didn't have national parks or Temple Square. But Mat had a job he loved in Utah, and there were walks, and vacations (although they did involve heavy use of drugs), and dinners out, and games of catch with the boys in the park.

In Kansas, or whatever place we're in now, there's a handicapped parking tag, a long-term disability absence from work, and weekly trips to the MGH infusion unit for chemotherapy that sometimes flattens Mat for two full days and parts of several other days.

I was relieved to learn that there are occasional games of catch in Kansas, but for a long time I wasn't sure.

I have to admit I hate it here, although we're trying to get used to it. The people are generous and kind, which helps. Life is simpler, and slower. There are family movie nights every Friday, and family fun (aka Family Home Evening), and nearly regular "scripture power," and dinner together almost every night, and long sessions of reading books with the boys.

And there is one thing I really like about Kansas: it happens to be exactly in the middle of God's hand. I hope we stay here for a long, long time.

Sunday, October 26, 2008

Dr. House

Mat went shopping yesterday and bought ... a cane. He's tired a lot of the time lately, and the cane helps to support his weight. He's kind of distinguished looking with the cane, in a Dr. House kind of way. If only it had flames painted on it.

Any volunteers?

This is a "vacation" week for Mat -- meaning no chemo. The timing is handy, because the kids have a demanding schedule of Halloween festivities this week.

The preschool trunk-or-treat was Saturday; the ward party is Thursday; and class parties and trick-or-treating of course are Friday. Colin has decided to be "black Spiderman." Ian is still torn between a vampire, a soccer player, and a Red Sox player.

Let's hope he decides soon, and that there's time to throw it together before Friday!

Wednesday, September 24, 2008

Younger, more beautiful-looking skin

Although MRI scans gave us something to cheer about a couple of weeks ago, real life has been a tad slower to follow.

Some rather embarrassing ... er ... digestive problems that have resulted from the side effects of chemotherapy have been plaguing Mat for a few weeks now. These have been painfully (and I do mean painfully) slow to resolve themselves, even with the help of yet another batch of prescriptions and a bunch of dietary changes.

That, plus chemotherapy side effects and cancer-related pain, kept us from breaking out the bottle of bubbly (sparkling cider!).

We'll keep the bottle in the fridge, though, because Mat finally feels like life may be catching up to the MRI. A Botox injection, of all things, seems to be helping with the digestive problems. (Mat reports that any shred of remaining pride is now long gone. I, on the other hand, was tempted to ask the colorectal surgeon if she could do something about my crow's feet while she had the syringe out, but I restrained myself.)

Even better, Mat has a strong suspicion that his tumors are starting to shrink. He's feeling a bit less back pain, and has more of an appetite, which are indications that the tumors pressing into his spine and stomach are smaller. Yay!

Now if Mat could just get past the chemo nausea and gain back about 20 pounds ... never mind. We'll take what we can get.

Tuesday, September 09, 2008

Cautious Optimism

Results from the scan are in: Dr. Dave is "cautiously optimistic" that the Torisel is helping! The largest tumors in the liver and lymph nodes did not grow over the last two months. This is good news by itself, since there was a lot of growth in the months before that.

But EVEN BETTER, the tumor cells appear to be necrotizing. In English: they're dying! (How often can you say that gleefully?)

This is where the cautious optimism comes in: if the cells are dying, the tumors should be smaller by the next time Mat has a scan, probably in early December.

Knowing the Torisel is working made it a little easier for Mat to suit up for another round yesterday. If only it were making it a little easier for Mat to get out of bed today ...

The days between a scan and the results are usually a stress fest at our house. This time around, we skipped that party and went to Maine, where friends from our congregation kindly let us use their vacation house.

It was blissful. We watched lobstermen pull in their traps, petted a shark, played in the water at the beach, and ate transcendent lobster rolls.

We are now officially New Englanders.

Tuesday, August 26, 2008

What else can I say? It stinks!

There's no funny way to say this: Torisel stinks.

This is the chemo drug Mat has been on since July 14. He gets an infusion of Torisel every Monday for three weeks, and then has a week off. The whole infusion process, which includes having blood drawn, getting lab results from the blood work, and meeting with either Dr. Dave or a nurse practitioner as well as the infusion, takes anywhere from three to six hours. It takes longer if Mat needs IV fluids to remedy dehydration.

But that's really the fun part of the week. Mat's infusion nurse is very funny and she almost always gets the needle in the first time. Mat is uncomfortable sitting in his infusion chair, but there's a TV, and volunteers bring snacks and lunch, and we hang out and watch Jerry Springer.

About midway through the infusion, Mat passes out from the Benadryl that goes with the chemo to prevent allergic reactions, and sleeps for most of the rest of the day. This is good, because it's hard to feel like throwing up when you're asleep.

The rest of the week involves a lot of sleep in between bouts of nausea, with an occasional outing to the park with the kids, to the dinner table, or for a walk around the block. Some days are definitely better than others. We went to a park and the mall last Friday, and we're going to try for a Red Sox game on Saturday (it's Mormon Day at Fenway Park!). Needless to say, Mat is on disability leave from work.

On the positive side, Mat is now down almost 20 pounds, so he doesn't have to worry about big hips! Wait ... I'm the one who worries about big hips. Mat, aka "stick insect," has never worried about big hips in his life.

As much as it sucks, I will never complain about Torisel again if -- scratch that -- when we find out that it works after Mat has his next scan. Some dates for the calendar: scan September 5, results September 8.

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

Update from last post: it was a case of shingles, and it cleared up with the help of Valtrex in a couple of weeks. And he got that thing out of his eye.

Hey, when you look at it that way -- everything's comin' up Milhouse!

Monday, July 21, 2008

All that and a bag of ... shingles?

So it's been a rough week. The truckload of side effects from the first infusion of Torisel really hit on Wednesday, when Mat didn't get out of bed until 5 in the afternoon. Things gradually improved over the rest of the week with the chemotherapy side effects -- Mat's getting more adept at managing the nausea and fatigue -- but a small rash on his leg got much worse.

Mat went in for his second infusion of Torisel today, which seemed to go well. The weird part of the day was the rash, which now covers most of his upper right leg. Dr. Ryan came up with some interesting possibilities (the "incredibly rare" necrolytic migratory erythema, which can be associated with neuroendocrine tumors, seemed to be the most exciting). Dr. Dave sent him to a dermatologist immediately after the infusion, who seems to have settled on a diagnosis of ... shingles.

A firm diagnosis is pending, until lab analysis of some tissue. Mat has pretty strong feelings about the collection of the specimens. Mat says:

The highlight of my day was definitely the x-acto knife. After savaging what he felt were the juiciest bits of my gammy leg with a series of alchohol swabs, our good doctor reached pleasantly into a drawer, retrieved a disposable x-acto knife and a small glass specimin slide (think middle-school microscope lab) and mentioned that the next step was going to hurt a bit. Things turned a bit surreal for me at that precise moment, my life warping suddenly into something Dali would have painted when feeling particularly imaginative. This was helpful I suppose, in that reality was not (and is not) particularly useful on a day like today. I'll write this one off and hope for a Pissarro tomorrow.

Then at home Mat somehow got a sharp particle stuck in his eye, where it remains despite repeated efforts to remove it. He's hoping the pus now oozing out of his eye (sorry to be gross) will help clear out the particle. He's now rocking back and forth in a corner listening to "Rocket Man" over and over (on his kick@$$ Bose headphones, a much-appreciated gift from co-workers that may have saved his sanity over the last year). "Rocket Man" seems to be helping him out of the dark place.

Should I tempt fate by asking the question? Oh the heck with it.

Could it get any worse?

Don't answer that.

Wednesday, July 16, 2008

Plan Z

After enduring days of pre-clinical trial insults including poking, scanning, blood-draining, and peeing in cups, Mat's body went on strike. It stormed off to sulk and refused to demonstrate the proper heart and kidney function indicators used to qualify patients for clinical trials.

In other words, it said "Find yourself another guinea pig."

This 11th-hour decision was after repeated assurances that Mat was likely to qualify for the trial, and despite my repeatedly pointing out that the remaining list of treatment options is so short as to be nearly microscopic.

Here, for your viewing pleasure, is the list:

1. Torisel: Kidney cancer drug with nasty side effects
2. Interferon: Nastier side effects than Torisel, and less effective
3. Adriamycin: Nasty old-school chemo drug that won Mat a free trip to the ER on the 4th of July two summers ago
4. Bizarre experimental procedure that can only be obtained in Switzerland (having already been tried in the U.S. and abandoned due to inconclusive results)
5. Brain transplant, to whip the heart and kidney function indicators back in shape

Mat has opted for Torisel, the comfy FDA-approved kidney cancer drug that includes rash, fever, weakness, nausea, and anorexia on its lengthy list of side effects. (Yes, you read that last one right.)

Mat was given his first dose via infusion on Monday, and did OK until today when he was hit by the whole truckload of side effects all at once. He was always taught to eat his green beans before dessert, so maybe with those items checked off the list tomorrow will go more smoothly.

Saturday, June 21, 2008

A Walk In the Woods



This is not a photo from our recent trip to England, but a family photo by the famous Ellen as evidence that we're slowly recovering from jet lag. We were all up at 4:30 a.m. on Thursday, a little closer to 5:30 a.m. on Friday, and 6:30 a.m. today. A few more days and we'll be back in familiar territory.

The vacation had its rough spots -- nearly being hit by a bus while trying to leave the Heathrow Airport springs immediately to mind -- but altogether was a great trip. The kids were suitably impressed by Warwick Castle and the Woburn Safari Park (where monkeys scrambled over our car); Mat found the National Motorcycle Museum; and I got to see lots of English countryside and historical houses. And eat fish and chips ... lots and lots of fish and chips.

The highlight for me, though, was motoring around Manchester and Liverpool, where Mat served his mission, and attending church in Hyde, where we met several people who remembered Elder B. I channeled my inner radio show host (think Ira Glass) for the trip, and interviewed Mat ad nauseum for mission stories using a digital voice recorder (thanks Sarah!).

Almost as good was coming home to a clean house with fresh flowers and dinner. We have such great friends!

Sunday, June 08, 2008

Roto-rooter

Mat has recently developed a new habit: waking up in the middle of the night to run to the bathroom and throw up. As endearing and invigorating as this habit is, Mat thought it best to mention it to Dr. Ryan during his visit on Thursday.

Dr. Ryan suspected that tumor growth was pressing on Mat's digestive tract, creating a blockage. Knowing that we have a trip planned, and knowing that a blockage can call for surgery and interfere with those plans, he got Mat in to see a GI specialist on Friday for an endoscopy (that's en-dos-kuh-pee, so you don't have to wonder).

An endoscopy is very much like what Mat tried to do to our bathroom sink pipes a couple of weeks ago. A long tube is crammed in your throat (lucky for Mat, he was sedated, although he does remember this happening) and through the stomach and small intestine, to look for blockages.

Fortunately, the GI specialist didn't find a blockage, but did find some stomach compression from a nearby infected lymph node. Also fortunately, the GI specialist was better at his job of roto-rootering than Mat was. While Mat emerged from his procedure unscathed ... we no longer have a bathroom sink.

Altogether Mat found it a relaxing day at the hospital (8 a.m. to 7 p.m.). I did not find it relaxing. I spent the day freaking out about the possibility of surgery. Of the two of us, I am often the one designated to freak out. It's a job I do quite thoroughly.

Mat has more tests scheduled for Monday, but in the meantime, he's been instructed to eat small meals, eat slowly, and chew thoroughly. In other words, listen to your mother, already.

Tuesday, May 13, 2008

Chemo Holiday

Mat's latest scan results show that his cancer has started to "grow through the Sutent," meaning the medication Mat has been taking is no longer shrinking the tumors in his liver and lymph nodes. Mat did get three months out of Sutent -- better than a bunt single -- but even Dr. Ryan wouldn't call that a home run. I'm thinking it was a double.

$#?&@*%!

(Rest assured that $#?&@*%! does not mean anything that can't be said over the radio. If it did, I would have to pay my co-worker $1. In an effort to clean up my language, I've asked him to collect money every time I use certain ... vocabulary. He's saving it for a contribution to Heifer International at the end of the year. I'm hoping for the sake of my mouth to have only enough for a flock of ducks ($20), and not enough for a whole cow ($500). But to be honest, if things don't turn around soon, I may have enough for two whole cows ($1,000).)

The upside is that Mat gets a "chemo holiday" -- a break from taking any kind of medication -- for the next month.

Although there's no obvious next strategy to take, there is a tentative plan: wait for a clinical trial of an mTOR inhibitor (translation: drug that interferes with cell growth) called Rad001 that should start in mid-July. We should find out in a few days whether Mat is likely to qualify.

Let's hope he does qualify, and that it's not a hook shot from center court.

Blessings Blessings Everywhere

I've been impressed recently by how blessed Mat and I are. I was taking a walk a few weeks ago, thinking about what would really get us through this cancer experience in one piece -- more money? a great therapist? a fabulous doctor? Almost immediately I had this thought: "You have everything you need."

It's true. To start with, Mat has a great job that he loves, where he's surrounded by people who really care about him. It's an incredibly supportive environment that comes with the huge bonus of generous benefits that give us a lot of peace of mind.

Next in a long line is that we live in Boston and Mat does have a fabulous doctor (also now a movie star!) at one of the best hospitals in the world. It's not just a good hospital, but a generous one, where patients whose insurance won't cover their cancer meds still get treatment.

In general, we feel surrounded by good, kind people who care about us -- in our neighborhood, at our jobs, in our community, and our church.

On top of all of that, we have each other, our children, our families, and our faith.

This isn't a trip I would recommend that anyone take, but since we're on it, we're happy to have all the right things in our luggage.

Thursday, April 17, 2008

The Truth About Cancer

PBS aired a documentary last night, The Truth About Cancer, that prominently features Dr. "Dave" Ryan with one of his patients, Jamie. Mat thought it was a little eerie to see his doctor on TV talking to a patient with a diagnosis similar to his in the hospital he frequents.

The show is very well done (by a woman whose husband died of cancer), and Dr. Dave is great. There's a very funny argument in the show between Jamie and her dad about whether Dr. Ryan is flashy.

Trust me, he's not.

The only thing he could do to be less flashy would be to show up to work in his pajamas. And Jamie's dad must have missed the bit near the end for Jamie when Dr. Dave looks close to tears.

For the short version, here are some of the truths about cancer:
Fewer than one out of ten patients survive the common cancers (breast, prostate, lung, pancreatic and colo-rectal cancers) once the cancer has spread distantly through the body.
Nine out of ten cancer drugs that go into experimental trials fail to get FDA approval.
Thirty percent of all cancers are related to cigarette smoking.
Lance Armstrong won the lottery, in cancer terms. In real life, a positive mental attitude won't save you even if you wear a livestrong bracelet. Cancer survival is mostly about biology, and believing otherwise puts huge amounts of pressure on people with cancer.
OK, so I owe Mat an apology for that one.

There's a lot of discussion in the show of "smart drugs" for cancer, some of which Mat is up close and personal with. Some of this is covered in a lengthy interview with Dr. Dave on pbs.org (click on The Truth About Cancer and then "interviews with experts"). (Also check out the interview for a great example of a spell-checker run amuck. Dr. Dave isn't actually talking to Jamie about taking "kindness inhibitors," although I suspect a couple of people I know of taking those. It's actually "kinase inhibitors.")

Best of all, after reading the interview with Dr. Dave, I think I finally understand his baseball metaphors. And the fact that Mat's latest drug is a "home run" -- it's huge. It could have been a bunt single.

Saturday, March 22, 2008

Two Weeks! I Want My Two Weeks!

A friend recently reminded me of a funny scene in the movie, Better Off Dead. A newspaperboy on a bike chases John Cusack's character through the street, trying to collect money from him, yelling, "Two dollars! I want my two dollars!"

I don't want my two dollars. I want my two weeks.

Mat has a six-week medication schedule: four weeks taking meds, two weeks off. Rinse. Repeat. The four weeks on medication are rocky. The first few days "on" Mat doesn't feel well, then he seems to feel better for a week or so before progressively feeling worse for the remainder of the four weeks.

By the end of the four weeks, I'm ready for Perky Mat to re-emerge, which usually does pretty quickly and lasts two weeks until he starts the cycle again.

I was totally ripped off this time around. The last day of Mat's four weeks he came down with strep throat, and spent the entire next week -- a vacation week -- being Slo-Mo Mat.

Mat felt better this week, but starts on meds again today.

Two weeks! I want my two weeks!

Monday, February 11, 2008

Hi-Def

Dr. Ryan says a lot of things that I either don't understand or can't hear because I often can't focus during appointments. I'm too busy trying not to throw up.

A few things come through in hi-def, however, like a line from Friday's appointment: "I'm very happy with the results of the scan."

A new CT scan shows that the tumors in Mat's liver are the same size now that they were three months ago. This is thanks to Sutent, the drug Mat is currently taking. Sutent only produces results for 15-20 percent of the people who take it, but, as Dr. Ryan likes to say, it looks like it could hit a home run for Mat.

Of course there is a qualifier: none of the drugs used to treat Mat's cancer is a cure. They work by inhibiting one or more of the pathways the tumors use to grow, but eventually the tumors find a way to work around them.

Dr. Ryan says the drug could keep the tumors from growing for perhaps a year or even longer.

(Are you thinking what I'm thinking? How is that a home run? What planet does Dr. Ryan live on, anyway? Never mind. After trying two different drug regimens in 2006 that were a complete flop, I'll take good news where I can get it!)

If/when the drug stops working, we try something else.

In the meantime, I'm looking forward to a nice, predictable year: our tenth wedding anniversary, birthdays, vacations (that aren't cancelled at the last minute to accommodate a major surgery), another summer, another school year, another Christmas.

Mat, on the other hand, thinks life is never predictable. I have to admit, he may be onto something ...

Thursday, January 24, 2008

Mat's Christmas (and MLK Jr. Day) Wish

The thing that Mat was looking forward to most about Christmas was being able to give Ian a snowboard. Ian already had a snowboard -- a toy store variety purchased for $1 this summer at a garage sale -- but Mat got him a real-live snowboard complete with bindings and edges. He loved it.

Ian got to try out his snowboard in Maine, where we spent a few days visiting family. We found a snow-covered hill where Ian could practice. Uncle Zach moved some snow around with his tractor to build a jump where he and Mat stayed entertained, Mom and Colin went sledding, and we all had a great time.

The true test of the snowboard, however, came over MLK Jr. Day weekend. We went to Vermont with some friends to a ski resort, and signed Ian up for lessons. He tried skiing one day, snowboarding the next, and ... he may be a skiier.

We still have plenty of time to convince Ian of the error of his ways. If we fail, well, at least Grandpa Tom will be happy.

Mat had two weeks off his medication around Christmastime, which meant more energy for snowboarding. He's back on, and it seems to be going well. He is a little tired, most things (including air) taste like aluminum, and, weirdly enough, his hair is losing color (check out his eyebrows the next time you see him!). All in all pretty manageable.

Mat will have another scan the first week of February to find out whether the Sutent is working. It may be too early to tell, but I'll keep you posted!