Happy: A Quest for Life After Death

Wednesday, November 29, 2006

Home Improvement

The new obsession that is currently monopolizing our lives is a lengthy list of home improvements. This fall may not have been the ideal time to have the house re-roofed and re-sided, with Mat completing his recovery from surgery, but we've never had the best timing. And Mat's dad offered to do all the work, with some help from his cousin JR. How can you turn down an offer like that?

This photo shows the south side of the house nearly complete -- the upper right-hand corner hasn't been painted yet. Since the photo, the roof is done, the siding is done, and Mat's dad is safely back in Idaho.

Mat is feeling pretty close to normal, and may actually be enjoying doing some finishing touches: painting trim, installing the screen door, and mounting a beautiful new house number next to the front door.

Although the list of potential projects is long (deck, basement, garage, landscaping, bathroom ...), our patience and our bank account have run out.

But if you're interested in working on a deck this spring ... I can hook you up.

Tuesday, October 03, 2006

Hi-ho, hi-ho

Mat's back at work this week! He felt great last week, and aside from sleeping late every day, life was pretty normal. Mat took Ian to the park, did a few dishes, and even helped his dad with re-siding our house. (Don't worry, it wasn't too strenuous -- he rested between cutting pieces of siding and handing them up the ladder to his dad.)

Mat plans to work short days as needed, but yesterday stayed until around 4:30. Not bad for a guy who's out of practice with being at work.

Today he'll leave a bit early -- so he can make it home for the call with Hong Kong, which is back on the schedule for 7 p.m.

Ahhh ... life is good.

Thursday, September 21, 2006

Six Months

Quote of the day:
"It looks like he got it all."
-- Dr. David Ryan, MGH Oncologist


We met with Dr. Ryan today to get surgery results -- pathology report, liver function, etc. Dr. Ryan confirmed that the surgeon, Dr. Tanabe, got "clean margins." This means a safe margin of healthy tissue was removed along with cancerous tissue, so no cancer cells were missed.

The plan now is for Mat to have new MRI scans and other tests every six months to look for recurrence. If it is going to resurface, chances are that would be within the next two or three years, so we're focusing on six clean scans! The first one will be in February.

Aside from the whole bad news parts, I enjoy these trips to the doctor. It's like a mid-day date with my shmoopy. Today the sushi place was closed, so we went to Anna's Taqueria for lunch. The grilled vegetable quesadilla was so good I didn't eat -- I inhaled.

Mat was feeling a bit better today. My response: "Good, now I can get mad at you again."

It's nice to feel normal.

Sunday, September 10, 2006

Walking on Water: A How-to Guide

Wednesday, June 14 was a terrible, horrible, no good, very bad day. Mat and I met with Dr. Ryan to review a new MRI that would show how well the treatment of Temodar and Avastin was working. We got the answer pretty quickly.

Dr. Ryan walked into the room and said, “I don’t think this is working,” and proceeded to describe the MRI images that showed nearly 50 percent growth in the two largest tumors in Mat’s liver over the previous two months.

I felt like I was drowning. I couldn’t focus, couldn’t breathe. Mat’s prospects had gone into free-fall. In my mind, Mat’s cancer went from being indolent (the medical term) to ruthless and aggressive. I tried feverishly to calculate in my head: 50 percent growth in two months … how big is a liver? how much liver does a person need to function? Could he have two years left? My guess turned out to be optimistic compared to a guess Dr. Ryan later gave Mat: one year.

I read religious books and magazines every night before I go to bed. It’s part of my bedtime ritual. I didn’t feel like it, but that night I opened a church magazine, the Ensign, to the place I had left off the night before, and dutifully began to read. These are some of the opening words of the sermon I read:

… I speak to those trying to hold back floodwaters of despair that sometimes wash over us like a tsunami of the soul. I wish to speak particularly to you who feel your lives are broken, seemingly beyond repair.

And then:
… whatever your distress, please don’t give up and please don’t yield to fear.

And one of my new favorite verses:
… I do know that whosoever shall put their trust in God shall be supported in their trials, and their troubles, and their afflictions, and shall be lifted up at the last day. (Alma 36:3)

The sermon described Peter walking on water and then, yielding to his fear, sinking into the sea. And then Christ reaching out his hand to save Peter. (Matt. 14:27-31).

I felt as though the entire sermon were addressed to me personally. Had I been on a very slightly different reading schedule, I would have read about the Church as the restoration of Christ’s original church. An excellent discourse, I’m sure, but not the life preserver I needed.

By the end of the sermon, I realized I had two choices: I could listen to Dr. Ryan and every shred of physical, rational, scientific evidence around me and drown. Or I could rely on repeated spiritual experiences that told me Mat will recover, fix Christ firmly in my sight, and walk on water.

I’ve tried drowning. Now I’m going to walk on water.

Lord, I believe; help thou mine unbelief. (Mark 9:23-24)

Tuesday, September 05, 2006

Laraine Wilkins


Another breakthrough: Mat and I went out for sushi this week! Mat's taking lots of short walks (all the way around the block!), and the highlight of his day is the ice cream truck that stops at the park by our house.

We got the sad news on Saturday that our friend Laraine Wilkins (photo, left) passed away as a result of injuries from a motor vehicle accident. Her 17-year-old daughter Lena was in the car with her and sustained very serious injuries. We will miss Laraine and are praying for Lena.

As my friend Ellen said, "What a rip-off."

Monday, August 28, 2006

The Tortoise and the Tortoise

Mat's officially been home for one loooong week. We're proud of the progress he's made -- he's eating, walking around a bit, and sleeping through the night! (I may use similar language if I ever have cause to start a baby blog.)

Mat's also watching TV (odd to think of this as progress, but it is) and got the XBox Kelly sent fired up within minutes of its arrival (thanks Kelly!).

We're now in search of the most comfortable chair in the world. Mat has a Lafuma zero-gravity chair (indoor and outdoor comfort! http://www.sitincomfort.com/larech.html), but it's a little lacking in back support. Mat bought a chair from Relax the Back, but after four days it's back relaxing at the store.

Suggestions welcome -- but keep in mind that the client is picky!

Saturday, August 19, 2006

Homecoming 2006

Mat's home! He's looking forward to getting more than half an hour of sleep at a time and having clothes that cover his rear end, although he can still hear those IV machines constantly beeping.

He'll miss the hospital food, though.

OK, that's not quite true. Mat requested one stop on the way home from the hospital: at a pizza place for a slice.

Friday, August 18, 2006

Prison break

In case you're looking for Mat at MGH and find that he's gone astray -- he made a prison break! No, he's still at MGH, but he has a new room that feels a lot less like a prison cell than his previous room, which was oddly shaped in all the wrong ways.

Mat's now in room 748 of the White Building. I'm not sure of his phone number there, but you can call the main number (617-726-2000) and they will be able to transfer you to his room.

Tuesday, August 15, 2006

Comic Relief

For some much-needed comic relief, here's a photo of Ian from Sunday (courtesy of Ellen Patton, photographer extraordinaire).

Mat had a good day today. He's pretty wonky from the pain medication he's on, but is in good spirits. He met his goals for today: he sipped juice and took two brief walks to the nurses' station and back (about 50 yards each trip).

Goal for tomorrow: drink more, walk more. More walking means no more catheter (something that completely fascinated Ian when he came to visit this afternoon).

An update from yesterday -- Mat feels up to having visitors, so if you'd like to stop by, you're welcome to. Mat's at MGH in the White building (elevator A), room 716B. He says, however, that you should keep your expectations low!

Monday, August 14, 2006

WHEW!

It's official -- the surgery is over, and it went well.

Note to self: resume breathing.

When Dr. Tanabe and his team "opened" Mat and examined his liver -- up close and personal -- they found exactly what they expected to see. Tumors on the right and left lobes, but nothing in the center section to cause a change of plans.

As expected, Dr. Tanabe removed the entire right lobe of his liver (containing a dozen tumors) and three tumors from the left lobe -- hopefully leaving none of the cancerous tissue. The surgery itself took about five hours, with a couple of hours before for preparation and a couple of hours after for close monitoring in the recovery room. No need to spend the night in the ICU, and, so far, no need for a transfusion.

No photos of Mat for today's post -- I don't want to scare any small children who may come across the blog. Mat's a little yellowish and waxy looking, and has tubes sticking out of various veins, but don't worry -- while I visited Mat briefly after surgery, a doctor came to examine him and pronounced that he looked "great." All I can say is his standards are reeeeeally low. (What do you think his wife looks like?)

The real photo op of the day came before the surgery when Mat dressed in his hospital gown, a shower cap to contain his non-existent hair (last week's attempt to regrow hair was a false alarm), and ... a pair of tights. Thigh-highs, actually.

Mat is left with about 30-35% of his liver, so he may temporarily develop jaundice, but that's nothing that can't be managed. And within three weeks, most of his liver will have regenerated. If you'd like to visit, Mat is at Mass General Hospital, in the White building, room 716B. He's pretty busy being checked out by nurses and doctors, bathed, etc., but by about 11 a.m. is done with the morning ritual.

Heartfelt thanks to you -- too numerous to count -- for helping us walk on water.

Monday, August 07, 2006

The Fine Line

Here's a picture of Mat on his birthday (two weeks ago), blowing out his candles with Ian's help. This picture is the only documentation we have of his hairless phase. It's been about six weeks since Mat's last chemo treatment, and he's letting his hair grow back in!

We're enjoying the last week before Mat's surgery -- doing home repairs. We really know how to have a good time.

In all honesty, we watched the entire first season of Lost on DVD over the last two weeks before doing any work ... Don't start it unless you have a lot of spare time. I liked a quote from one of the show's characters, a religious woman: "There's a fine line between faith and denial. It's better on my side." I can relate.

The thought for today is from something the great philosopher, Mat Burnett, talked about yesterday during fast and testimony meeting. His latest hospital roommate, an elderly man with a heart condition who complained a lot, inadvertently taught him the importance of gratitude.

In reflecting on this lesson, he said: "We're not entitled to a lot of the things we think we're entitled to. The things we are entitled to are a lot more important."

Discuss amongst yourselves.

Sunday, July 30, 2006

Surgery Scheduled

Mat's surgery is scheduled for Monday, August 14, at 6 a.m. I think I prefer the middle of the night. I'll be at the hospital, chewing my nails, and J.R. and Amanda will take care of the kids (although they don't know this yet -- surprise!).

If you haven't seen us lately, here's a picture of our family -- from top to bottom, clockwise: Ian (5), Colin (19 months), Kimberly (now officially old), and Mat, pre-hair loss. Oops -- pre-complete hair loss.

Saturday, July 29, 2006

The Surgery

Meanwhile ...
The list of treatment options for treating metastatic neuroendocrine tumors is short, and other than complete removal with surgery, each has a low probability of success. In case the new treatment didn't work, Mat decided to revisit the possibility of removing the cancer by taking out portions of his liver (called resection).

He met with Dr. Tanabe at MGH on July 18, expecting to hear that resection was not an option. Instead, he said yes ... with the condition that Mat's cancer had not grown more than 25 percent since the last MRI.

Mat had tests almost every day this week to check on the cancer growth. We found out on Friday that Mat had a "minor response" to the streptozocin and adriamycin. Although it did not hit the "home run" we're looking for (and that Dr. Ryan keeps talking about -- I think "home run" here may be a euphemism for "miracle") -- it kept the cancer stable, and thus operable!

Although Dr. Tanabe is willing to perform the surgery, one of the things Mat likes about Dr. Tanabe is that he is realistic. Other surgeons he's talked to have been overly optimistic about the probability of a cure with surgery, and lost some credibility with Mat and Dr. Ryan as a result. Dr. Tanabe is managing expectations: He told Mat that he thinks the probability of five-year survival with surgery is 25 percent -- give or take 25 percent. I'm hoping he's a little too pessimistic.

The plan is for Dr. Tanabe to remove 70 percent of Mat's liver -- the entire right lobe and much of the left lobe, leaving the center. The liver will regenerate within a couple of months. This is very hard work, so Dr. Tanabe expects Mat to be very, very tired. The surgery will be performed within the next 2-3 weeks -- any longer, and it may be too late.

It is possible that when Dr. Tanabe examines Mat's liver during surgery he will find more cancer than is shown on the MRIs and CT scans. If that is the case, and if he doesn't think he can remove 99 percent of the cancer, he will not perform the resection. Does everyone know what to fast and pray for? Good.

Here's a web page with Dr. Tanabe's picture and quite impressive resume: http://www.mgh.harvard.edu/cancer/care/adult/melanoma/team_clinician.asp?id=258

We'll have a date for the surgery on Monday. I'll keep you posted.

The Sequel

February 2006
After the surgery, Mat's oncologist, Dr. David Ryan at Massachusetts General Hospital, started him on a schedule of regular follow-up tests. In early February 2006 we learned that the cancer had resurfaced, this time in his liver. The devastating news was that with 10-12 tumors spread through both lobes of Mat's liver, the cancer appeared to be inoperable.

Dr. Ryan is a nice man with a lovely wife (I've heard) and four children. Here's a link to a webpage with Dr. Ryan's (unflattering) picture and resume:
http://www.mgh.harvard.edu/cancer/locator/search_clinician.asp?id=213

The Drugs - April 2006
Mat first tried a combination of Temodar, a chemotherapy drug, and Avastin, a cutting-edge therapy designed to approved therapy designed to inhibit angiogenesis, the process by which new blood vessels develop and carry vital nutrients to a tumor. He received infusions of Avastin at MGH every two weeks, and tolerated the treatment well. Mat was occasionally tired, but kept up almost full-time with work. His nausea was pretty well managed with medication.

New Drugs - June 2006
The Temodar and Avastin didn't work -- after eight weeks of treatment, the cancer had grown substantially. In late June, Mat started on an older chemotherapy combination of Streptozocin and Adriamycin, which sucked. Mat had daily infusions for a week that made him very tired and, about a week later, made his hair fall out. As an amusing follow-up to the week of infusions, Mat was hospitalized for pneumonia on July 4. In the middle of the night, of course.

Mat was scheduled for infusions every three weeks, but Dr. Ryan had him skip Cycle 2 because his white blood cell count was too low.

The Beginning

When I signed up for this blog months ago, I thought it would be a showcase for my witty comments and insightful observations about life. Maybe later. For now, this blog is about Mat's cancer. I hope you, our friends and family, will be able to get updates about Mat without worrying about whether you're asking annoying or inappropriate questions. I can't think of how to write this week's update without the background, so here's the history.

The Beginning - April 2005
Mat was diagnosed with a neuroendocrine tumor in his pancreas in April 2005. As it always seems to happen, it was the middle of the night. Mat woke up with excruciating pain in his abdomen. He tried to get back to sleep for a couple of hours, and finally drove himself to the nearest emergency room. Nothing obvious was wrong with him -- vital signs OK, no profuse bleeding, no bones poking out -- so he sat in the ER all day. Mat said he thinks the receptionist there was hoping he would leave.

He didn't leave, so finally he was given an MRI that showed a "mass" in his pancreas. (ERs and doctor's offices are full of euphemisms.) He was admitted to Mt. Auburn Hospital in Cambridge, Mass., and had surgery the next evening. Dr. Armen Kasparian performed the surgery. Everything went well -- Dr. Kasparian got clean margins (indicating he removed all of the cancerous tissue) and sent Mat home after about five nights in the hospital.