Walking on Water

2:14 AM

2012-01-28T23:51:00.000-08:00

I just glanced at the clock and read the time: 2:14. Why does everything remind me of Valentine's Day? The upcoming one-year anniversary of Mat's passing is weighing on me like a grand piano. It's getting hard to breathe under this thing.

People in my bereavement support group agree that these days would be best taken off the calendar.

Official announcement: There will be no February 14th this year. The date will skip directly from the 13th to the 15th, and February will end on the 30th. February is already such a flexible month, expanding and contracting as necessary -- why not just take advantage of that?

It seems easier -- although not easy -- to think about the fact that Mat has been gone for almost a year now than to live through this one day.

It's not as though February 14th will somehow remind me of his passing more than the empty space next to me in bed already does. And yet Mat's passing -- and the excruciating detail of the events of that day -- become more present with me every day as I approach the one-year mark. I feel as though I am approaching a hot stove, and on the 14th I will put my hand directly on it.

The heart-shaped reminders in card displays and candy aisles are not helping. Why is the whole world celebrating on the worst day ever?

It was then-nine-year-old Ian who said, "Why did Dad have to die on Valentine's Day, of all the days?" Good question.

Valentine's Day is not much of a holiday -- it's a Hallmark holiday that plenty of people despise. (Let's organize! Down with Valentine's Day!) Heaven help the people whose loved ones died on a real holiday. My heart hurts for them.

Now it's 2:41. There are those numbers again.

We are coming up with a strategy for this dreaded day. It's a bit loosely shaped right now, but it involves the boys skipping school to avoid Valentine's parties, and doing something that helps us feel connected with Mat. I suggested handing out sugar cookies and sandwiches to homeless people near Mat's office. He would like that, I think. Ian liked that idea but thought we should also do something fun that Dad would have enjoyed, like going snowboarding. Seven-year-old Colin suggested that he get presents.

Maybe we'll do all three. I'm pretty sure we won't do my original idea, which was staying in bed with the covers over our heads. I think we can do better than that.

I hope we can.

Lost and Found

2012-01-06T14:15:00.000-08:00

I found the missing diamond from my wedding ring this morning.

You might remember from a previous post that I lost the diamond from my wedding ring in late August -- almost five months ago. The boys and I were on our way out of town for a camping trip when I looked down at my hand on the steering wheel and realized that my ring was ... empty. The white gold band was there, the four prongs that held (or were supposed to hold) the princess-cut diamond were there, but the diamond was gone.

I pulled the car over and started hyperventilating. Then I calmed down. I decided I didn't want to ruin our camping trip worrying about the diamond.

That was more easily said than done, but there were some encouraging developments. For instance, in my sister's dream the previous night, she lost her diamond and found it in the middle of her living room carpet. Surely this was a sign: I would find my diamond in the living room. Then during a stop on our way, I instructed Ian to search the fully packed car for the diamond. When I got back to the car, he was sitting peacefully in his seat, not looking. He reported that he had prayed about finding the diamond, and received a firm answer that it was not in the car. Surely then God would tell me where it was.

Although that didn't stop me from searching the car later, from top to bottom, as well as all the clothes and camping equipment packed inside the car.

It wasn't there, so I got home from the camping trip fully expecting to find the diamond. I didn't. Then I scoured every carpet on my hands and knees, swept every floor, moved furniture, inspected kitchen and bathroom drains, and searched the garage, where I had been packing the car for the camping trip. Nothing.

So I quit looking. I decided that if God said I would be all right without my ring, then I would.

Then this morning I went for a walk. I was multi-tasking, of course, chatting with my friend Amy about the merits of Costco (Soviet-style grocery store or happy place? discuss amongst yourselves) on my cell phone. As I approached the house to enter through the garage at the end of the walk, I looked down and there it was.

My diamond was in the driveway for almost five months through a storm (August), snow (October), and a very thorough leaf-raking (November).

I started shouting at my friend on the phone: "AMY! I JUST FOUND MY DIAMOND!"Then I called my sister and shouted at her for a long time "YOU'LL NEVER GUESS WHAT JUST HAPPENED TO ME!" In her excitement, she shouted at her kids for a long time ("KIMBERLY FOUND HER DIAMOND IN THE DRIVEWAY!") until they asked her to stop. Then I called some of my other people, who I didn't shout at because they were at work and because I was getting hoarse.

Every time I think about my found diamond, I laugh and marvel at it. I think the sheer improbability of it qualifies this as a miracle. Discuss amongst yourselves.

Thanksgiving

2011-11-23T19:58:00.000-08:00

I'm thankful for my kids, and for my friend Amy, who made this quilt for me out of some of Mat's shirts. As she said, "If Mat can't wrap his arms around you, at least you can wrap this quilt around yourself."

The day Amy came over to help me choose shirts to put in the quilt was an emotional day. It was hard to let the shirts go -- the crisp blue and white ones Mat wore to work, and especially the soft plaid ones he wore at home. I've been told that all of Mat's things will someday not seem like so much a part of him and become just things. That day hasn't come yet, so I cried with Amy over the shirts.

But now they're back, and someday when Mat's shirts become just shirts, this quilt will not be just a quilt. It will always be a memorial to my best friend Mat and to the kind of friendship that sees me through the day.

Eulogy

2011-10-20T13:36:00.000-07:00

This is the eulogy I gave at my mother's funeral in August.

* * *

My mother was born in 1944 in Minneapolis, Minnesota, where her father was finishing a Ph.D. in dairy science. Her family soon moved to Madison, Wisconsin, where she spent many of her growing-up years learning to ice skate, taking ballet and piano lessons, and navigating life as the second oldest of six children, four of them girls.

Her sisters agree that she was the best of the lot of them, and her sister Janell says she is the only one without a mean streak, although she then proceeded to tell me about the time that my mom and her sister Stephanie hid all the Christmas presents in the trunk of the car, so when everyone woke up, there were no presents under the tree. She must have had a little bit of a mean streak.

Her family moved to Tucson, Arizona, when she was 12, where she loved playing tennis, writing for and editing her high school newspaper, and working in student government. She was selected to attend a journalism convention in New York City, a trip that she talked about for the rest of her life. She had breakfast at Tiffany’s, rode the subway, saw the Rockettes at Radio City Hall and caught a Broadway show. She wrote in her personal history, “The show was honestly worth the ticket -- $8.35.”

My mom attended the University of Arizona and then Utah State University, where she graduated – with honors – with degrees in journalism and political science in 1966. She wrote a column for the school newspaper, the Utah Statesman, called “Smithereens,” was a student senator, and as a senior was named Woman of the Year.

After graduation, she spent a year working at the Salt Lake Tribune, where she was the first woman ever to work on the copy desk.

She was stunningly beautiful. She was beautiful the day she died, and if you’ve seen the pictures of her in her 20s, you’ll think you’ve discovered the next supermodel (if only she had ankles). As her sisters say, she was the complete package.

This is a letter of recommendation written for her when she applied for a job in the office of a member of the U.S. House of Representatives that says it all:

… she is highly qualified, would make you an excellent assistant. Each year we pick the outstanding journalism student from USU to serve on our staff as a summer intern. Sheryl was our pick this summer and she also won the Utah State Press Association journalism scholarship.

We all learned to love Sheryl during the three to four months she was with us. Her wit, grace and charm went well with her very capable work. An excellent writer and photographer, she dug into her job with a minimum of direction. …

[this is my favorite part]

She’s a pretty girl, too, and would add to your office decorations. Tall and statuesque, she has a dark complexion that is striking. We would have used her as our Peach Queen entry if she had lived in Box Elder County.

She was offered the job (are you surprised?).

She didn’t take the job, though. She had met my dad while a student at USU and they were married in 1967 in the LDS temple in Logan, Utah.

She spent the first years of her married life in Utah, where three of her children were born. We lived for brief periods in Virginia and then Anchorage, Alaska, where she made lasting friendships and wrote a guide book called Anchorage Altogether. We moved to Sherwood in 1975, where my youngest sister, her fourth child, was born. She continued to write, and her publications include Beautiful America books like The Mormons, guest columns in The Oregonian, and articles in The Ensign and the Exponent II.

My mom was a talented writer, but maybe she should have been a dentist. She would give us money if we would let her pull out our loose teeth. I knew she was not doing well a couple of weeks ago when I pointed out my six-year-old’s loose tooth to her, and she didn’t offer to pull it.

My mom was also a gifted teacher. Although she never taught full time, she used her talents almost constantly in her church service. She taught children’s classes, young women’s classes, women’s classes, and Sunday School classes, but I think she loved teaching the scriptures best. She taught a daily early morning scripture study class for teenagers for at least five years. My younger sister remembers spending evenings with mom at the dining room table, doing homework while my mom immersed herself in the scriptures, preparing for her seminary class the next day. She loved her students, and they loved her, going so far as to spend their weekend nights at my parents’ house to hang out. As Jeff, one of her favorite students, said, “She was one of us.”

Perhaps her greatest gift was her genuine interest in people. One of my friends wrote me a card this week saying, “I only met your mom a few times, but she made me feel like a friend.” She did that for everyone. My mom made fast friends wherever she went, because she genuinely cared about people, and was more interested in how they were doing than in how she was doing. My mom helped to carry the burdens of many people.

My mom was accomplished in many other ways as well, but her greatest accomplishments in her eyes were her children. She was devoted to us. She loved to laugh and have fun. We played spoons, Uno, fruit basket upset, Clue on her beloved Franklin Mint Clue board, and even had an occasional food fight, some of which she started. She liked to keep us on our toes, doing things like sneaking broccoli into our filled pancakes. She scheduled regular individual meetings with each of us, called “one on ones” where we talked about problems, set goals, and planned special individual outings.

She taught us to play the piano, to work, to stand up straight, and to say “may I” instead of “can I.” She taught us to make good choices and she wanted us to stay close to the Lord, but she loved us even when we didn’t. When we left home, we all had inflated egos because she told us we were each “the best in the world” at something (I was the best writer, SJ was the most creative).

Her job as a parent was not over when we left the house. My mom loved to visit her children, helping to take care of new babies, babysitting grandkids while we went on trips, and helping us do projects around our homes. Over the last several years, her heart’s desire was to help me and my family as my husband fought his battle with cancer. This is an email she wrote shortly after my husband Mat passed away earlier this year.

… I’ve spent a month in Boston in January-February, was with her [meaning me] when Mat died. It was the best and worst month of my life. My kids have all spent a week with her after the funeral, and I’ll be returning in two weeks. This is so very, very difficult to be a continent apart.

One of the greatest gifts I could have been given was to have my mom with me as my husband was dying, and I find it to be no small miracle that the symptoms of her own cancer did not surface until shortly after Mat’s funeral.

My mom was wonderful, but I didn’t always think she was perfect. I sometimes wished that she were more inclined to make big moves or really shake things up. She worked at Intel for at least 20 years as a contract analyst, and although she loved the people she worked with, it wasn’t the best use of her talents. She often talked about other things she would have liked to do more – she earned a teaching license so she could be a teacher – but in the end she never made the move. If you wanted to start a revolution, she was not your gal.

Instead of being loud, hers was a subtle kind of courage. She took the circumstances she was given, and over years of persistent effort, through thousands of small acts, she made them beautiful. At the end of her life, she had beautiful children (if I do say so myself), a beautiful marriage, a beautiful home, and many, many beautiful friendships. With more inclination to make big moves, she might have been the New York bureau chief for the Associated Press. Instead, she blessed the lives of hundreds and hundreds of people through regular, conscientious, enduring effort.

I’m glad she had that kind of courage. New York bureau chiefs can be replaced, but her legacy is forever.

Walden Pond

2011-09-29T19:32:00.000-07:00

My friend Kristen invited me to swim across Walden Pond with a group of women the other day, so although the idea scared me a little, I went.

I was sure the water would be punishingly cold, and although I know how to swim, I have never particularly liked to swim, especially for exercise. I can run, I can ride a bike, I can row a boat, so why would I swim? But still, how hard could it be to swim a mile, from the beach to the other side of the pond and back?

Really, really hard.

I thought I knew how to swim, but it turns out I don't. Not really. Instead, I flopped around in the water, trying to synchronize my breathing with my strokes, getting water in my mouth, either trying to hold my breath for too long or taking breaths too often, causing me to start to hyperventilate and creating mini panic attacks. I tired easily and had to take breaks often, and ultimately, I didn't make it all the way across Walden Pond. I went the short way, taking the half mile version of the swim rather than the mile that most of the rest of the group did.

It was hard, but it was also wonderful. It was a warm fall day, the sky was beautiful, the water was clear and refreshing, and my friend swam next to me to encourage me and be on hand to save me from drowning if necessary. Occasionally I got my timing exactly right and felt like a real swimmer.

Like many things, my swim felt like a metaphor for my life. Although I am struggling and may not be able to go as far as I would like, the sky is beautiful, the water is not as cold as I thought it would be, and my friends are staying near me to encourage me and make sure I don't drown.

Kenmore HE2 Plus Front Load Washer

2011-08-23T07:27:00.000-07:00

I'm trying to pack for a trip, and the washing machine, which contains every last piece of underwear I own (but one), is flashing an error code at me.

This summer has introduced some new twist every few days that feels like it should be the last straw ... until another straw is added. Of course the aftermath of Mat's passing and my mom's illness and then passing dominate the scene. But then there was the broken garage door, the broken dishwasher, the refrigerator that leaked into the basement and damaged the drywall, the broken car, the broken cell phone (not replaced yet, so I'm not getting your messages and texts), my six-year-old's broken arm, probably broken friendships because I have little time and energy to return calls and emails, and now the washing machine.

And the broken wedding ring. I realized Friday that the diamond had fallen out, and have spent hours scouring the house since then. On the plus side, the house is much cleaner than it's been in months.

I've been thinking about the poem "Invictus" for the last few days. Maybe that's a little dramatic, seeing as I'm not about to be executed, but it seems to help. When I first read it, I found it too depressing to be helpful. Now I find the optimism in it.

Invictus
William Ernest Henley

OUT of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

I could use your prayers to help me find the diamond for my wedding ring. I am not ready to quit wearing it, and the gaping hole where the diamond should be is painful. There's the symbolism of it, and also those prongs are sharp.

In the meantime, my unconquerable soul and I are going to try to fix the washing machine.

Beautiful

2011-08-04T21:06:00.000-07:00

I found this picture of my mom last weekend while I was at her house, digging through her photos and scrapbooks for the life sketch that I delivered at her funeral. I'm not sure I had ever seen it before. She strikes me as stunningly beautiful in this picture.

Maybe it's the candor of the photo, or the mild impertinence of the expression on her face. Maybe it's that she's just such a person. (I never really noticed that before.)

Then again, maybe it's because she was stunningly beautiful.

My mom, 1944-2011

2011-07-26T19:36:00.000-07:00

My mom died today, much sooner than I expected. Last month, I was afraid her bout with cancer would be a re-run of Mat's. I almost wish it had been five long years instead of five short months. For her sake I'm glad she didn't suffer more. Selfishly, I wish I had been able to say good-bye.

Good-bye, mom. I love you.

Lace Anniversary

2011-06-12T19:31:00.000-07:00

In this difficult year of firsts -- first Mother's Day without Mat, first Valentine's Day without Mat -- today may rank as one of the most difficult.

Mat and I were married 13 years ago today.

Mat was a strict believer in traditional anniversary gifts. He would spend weeks searching for the perfect gift made out of the appropriate material, which was not always an easy task. The first anniversary, paper, brought the complete works of Shakespeare. For later anniversaries he picked out a sweater (cotton), a cherry bonsai tree (fruit), and the maple dining room table that he built himself (wood). The only anniversary gift he gave up on entirely was bronze, because the only bronze objects he could find were strange and expensive sculptures.

I have been dreading my thirteenth wedding anniversary for weeks. As part of my survival plan for the day, I decided to buy myself an anniversary present. I would look up the list of traditional anniversary gifts, spend the next weeks puzzling over what item Mat would have given me, and buy it. I told this plan to a friend, and she immediately emailed me a link to the list.

As soon as I saw the list, I knew I already had my anniversary gift.

Mat served his mission in Manchester and Liverpool, England. While he was there, a mill that had produced hand-made lace tablecloths for centuries closed its doors. Mat, who was barely past his teens at the time, bought one of the last tablecloths made in the mill. His mother used it on special occasions for several years, and then delivered it to Mat so he could give it to me.

When Mat gave me the tablecloth about ten years ago, I very carefully put it in a plastic bag and promptly forgot about it. Until I saw the list.

The thirteenth wedding anniversary is lace.

I felt as though Mat were giving me the tablecloth all over again, but this time I understood the value of the gift. Not as a rare and valuable piece of craftsmanship, although it is that, but as the tangible expression of Mat's love for me that stretches farther back than his teenage past and farther forward than I can imagine.

I love my lace tablecloth.

(Now let's be honest. With a sanctioned excuse to buy me lace, Mat would have gone straight to Victoria's Secret and we would have celebrated our anniversary properly. But under the circumstances, I much prefer the tablecloth.)

Well done, Mat. Happy anniversary.

Seriously?

2011-05-29T20:03:00.000-07:00

If you don't already know my mom, let me tell you about her.

A journalist by training, she was the first woman ever to work on the copy desk at the Salt Lake Tribune. She got married and reared four children, wrote books, wrote articles for the Oregonian, and produced much of our family's food on our 11-acre plot. She taught a daily hour-long early-morning scripture class for high school students for four? five? years, earned two master's degrees, and spent a long career at Intel.

And when Mat got sick, she visited every two or three months, staying as long as I would let her so she could wash my dishes, do my laundry, and play Candy Land for the seventeenth time in a row with Colin. I could go on for a long time about my mom.

She was diagnosed with cancer a few weeks ago. Extensive surgery was required to remove a large mass from her abdomen, and several organs were casualties of the operation. There is no indication that any cancer remains, and there is nothing to do now but wait and see if it recurs.

I will freely admit that I am freaking out. I feel like I'm watching an instant replay of 2005, the year Mat was diagnosed. Rare type of gastrointestinal cancer? Check. Major surgery? Check. Surgeon says the cancer is gone? Check. Cancer recurs?

I'm trying not to go there in my mind, but it's hard.

The difference is that I'm thousands of miles away, and I feel completely and utterly powerless. Seeing the situation from this side of the country is eye opening. Now I know what it's like to never feel like I have quite enough information, to never be sure when, if ever, is a good time to call, and to want to simply be there in person.

I hate it.

I want my mommy.

Mother's Day

2011-05-08T18:48:00.000-07:00

Mother's Day is a mixed bag under the best of circumstances. Although children can be sweet, Mother's Day is really about what Dad does to make Mom feel special, right? Today, without Mat, I thought it would be about as much fun as a poke in the eye with a sharp stick.

Mat didn't actually have the best record with Mother's Day, however. One year he forgot entirely. I realized this pretty quickly, but decided not to say anything (e.g., be a martyr). All morning I thought, "It's OK. It's no big deal that he forgot Mother's Day." I repeated this mantra in my head until about noon, when a flip switched (probably prompted by a tantrum from one of the boys, then two and five). I gave Mat a piece of my mind and stormed out the door to take a long, long walk.

While I was gone, he wrote me a a book of cartoons called, The Mother's Day Book for Kimberly, or "Trying to Think Like I Think You Might Be Thinking."

The first page features a conversation between worms. The wife worm says, "You remembered!" and the husband worm is saying, "Of course. I may be a slimy worm but I wouldn't forget Mother's Day!"

Another page features my two-year-old standing on my head, saying (as he often did), "I want juice!"

I came back from my walk with a cooler head, the book made me laugh, and all was forgiven.

And now I have a book that Mat wrote for me, and a good story to go with it.

I'm so glad Mat forgot Mother's Day.

Today

2011-04-20T20:50:00.001-07:00

Occasionally Mat would have a good day and say, "I feel great! Today I feel like I don't have cancer."

I was in Topsail Island, North Carolina last week. I think about Mat all the time, but I thought about him even more there. From our home base in Washington, D.C., we regularly went to the Outer Banks of North Carolina with groups of friends while we were dating. During one trip, we paddled out into the ocean on a sea kayak early one morning and suddenly found ourselves surrounded by dolphins. The thrill of that moment is forever imprinted in my memory. (It ranks close behind the thrill of my first kiss with Mat, which also happened in North Carolina.)

As I swam in the ocean last week and waited for the perfect wave, I thought, "I feel great. Today I feel like I don't have cancer."

I have never had cancer. But Mat has, and he savored each day when he felt well. There in the water, I decided it's never too early to start savoring.

Today, I feel like I don't have cancer.

Greatest romance of all time

2011-03-22T17:07:00.000-07:00

This is the talk I gave at Mat's funeral. I'm glad I spoke, although I'm surprised I could get any words out.

* * * *

When I was 25, and he was 26, Mat and I attended the same singles congregation. Despite the fact that the congregation was not that big, it took us a few months to meet. I was dating a blot named Andrew at the time, so I was a little elusive at church, showing up late and leaving promptly at the end. Mat had noticed me, though, and he and his friends dubbed me “Tall Mysterious Kim” or TMK. (This was before he learned to call me Kimberly.)

The nickname distinguished me from the woman Mat was dating, whose name was Kim. She was 19, so she became “Teen Kim.” My alternate title was “Geriatric Kim.”

Mat and I finally did meet, and both Andrew and Teen Kim were quickly dispensed with.

Mat totally changed my life. He was tall, good looking, funny, smart, and deeply spiritual. Never in my wildest teenage dreams had I imagined someone as wonderful as Mat. At first I tried to hide all my flaws from him, but he was totally honest with me, and I quickly learned that I could be totally honest with him.

We were engaged four months after our first date, and married nine months after that. From the beginning, I felt that our relationship had a fairy tale quality to it, although we didn’t exactly get married and live happily ever after.

I think it’s fair to say that much of the last 13 years has been very, very stressful. There were months of full-time travel for Mat, job insecurity with the tech bubble burst, miscarriages, and, of course, nearly six years of cancer.

Despite these stresses, the last 13 years have been happy. Of course we fought sometimes, but Mat has been completely devoted to me, and I to him. We have loved being together, had fun together, and trusted each other. And even when chemotherapy and cancer made him miserable, Mat figured out how to be a good dad, and he has two beautiful boys who want to be just like him.

Despite all the hard things we faced together, I also knew from the beginning that God had a hand in our relationship, and that we really were meant to be together. One of our bishops said to us, “The Lord is pleased with your union.” I believe that is true, and that our relationship will go down in history as one of the great romances of all time.

Someone said, quite accurately, the problem with death is that the person is just so gone.

That resonates with me, and yet I sense that the leavening that Mat added to my life is not gone. A lot of this has to do with how Mat lived his life over the course of his illness, and especially at the end. He felt at peace, and he worked very hard to make his passing as gentle as possible for many of us, having dozens of conversations to say goodbye and comfort those of us who are heartbroken that he is gone. I think he also waited to leave – suffering many extra months – until I was as ready as I could be for his passing.

Mat believed, and I firmly believe, that we will see each other again, that we will be a family again. That can feel like cold comfort when I expect that reunion to be 40 or 50 years from now. But the miracle is that I feel the power of the plan of salvation right now. I feel a comfort and peace that I didn’t expect.

I don’t pretend that the weeks, months, and years ahead will not be very, very hard. I cannot do anything but take one day at a time or I might drown. But God is with us, His hand is still in our lives – maybe more now than ever – and over the last few weeks I have felt that every day.

Elder Uchtdorf said that ultimately every story has a happy ending. I believe that. In a very real way, Mat is not gone. Our fairy tale will have a happy ending.

This is Not Over

2011-03-03T20:35:00.000-08:00

This is not over. Far from it.

It's been 17 days.

People ask me how I am, and I have a hard time coming up with an answer. "I got out of bed this morning," I say sometimes.

I don't want to get out of bed. I'm fighting an overwhelming urge to stay there. I worried that I would not be able to revisit the place where Mat died, in bed, in the guest bedroom that we moved into when Mat could no longer climb stairs very well. Far from avoiding the room, I find that I feel the most peaceful there.

Part of it must be my craving to fill the void he's left. I want to sleep where he slept, and wear his clothes (the jeans that are a couple of inches too long -- those are Mat's), read everything I can find that he has written, and be with his friends. Mat gave me permission to read his journals, and I did. (I probably would have anyway.)

At least one of my siblings has been staying with us since Mat died, so we are being well taken care of. Dozens of people are offering help and support and encouragement, all of which is making this much easier than it might otherwise be.

Now if only I could sleep.

July 25, 1970-February 14, 2011

2011-02-14T19:35:00.000-08:00

Mat died today. On Valentine's Day, of all the days.

We're all in shock despite knowing this would happen, but wanted you to know.

The funeral will be Saturday.

Acceptance

2011-02-05T23:17:00.000-08:00

It's been a good week.

I'm not kidding. These are not at all the despair-filled days I have imagined over the nearly six years of the course of this disease.

Peace has descended on our home. Mat is far more zen-like than I am, and he has long accepted that his life will be short. I didn't think this was possible, but I have too.

I can't explain exactly how this happened. Mat's frame of mind certainly helps, and his latest prognosis has brought clarity. No longer split between hoping for the best and preparing for the worst, my energy is focused on acceptance. Some inspired conversations have also helped.

Klara, the tall, blonde hospice nurse, said to Mat, "You know, one of the reasons you are doing so well is that you understand that you are not your body. You are not declining, only your body is declining. Your spirit is growing stronger all the time and is beginning to shine through. You're like a house whose panels are falling off and light is coming out. Soon the house will be gone but that light will still be there."

Mostly, though, I think this acceptance is a gift from God. I know that God's plan for Mat and our family is for him to die soon. I don't like it, and I don't understand it, but I accept it.

This week Mat has been purposeful and mentally, if not physically, energetic. There has been a steady stream of visitors at our house, some of whom have flown across the country to be here, and Mat clearly loves it. He wants to see as many people as possible (before 6 p.m. please, to preserve some time with the kids), and has talked on the phone to say goodbye to many others. Mat has also spent time with the kids, sat with them in front of a fire roasting marshmallows, and given them father's blessings. And today Mat and I spent some time in the celestial room of the Boston temple. It was a piece of heaven on earth.

It's not all spiritual depth at our house. Mat has been watching episodes of his new favorite TV show, Bizarre Foods. He finds it soothing to watch the host travel to exotic places and eat things like guinea pigs and wild boar testicles, and Ian loves watching it with him. I also join him, but only for a dying man would I watch someone sucking on an eyeball. (Sorry! That was gross!)

And for the last book he will read Mat has chosen not War and Peace or Dr. Zhivago but ... Princess Stories. It's a favorite of mine from childhood, and we read a chapter together every night before bed.

Of course it's also been a difficult week. Mat is increasingly in pain, and changes in his pain medication help but can't seem to quite keep up with the spread of his cancer. His port -- that crucial device implanted in his chest that delivers pain medication -- is regularly threatening to malfunction. I flush it three times a day and pray that it will work as long as he needs it. Mat is also now unable to walk without assistance, and then only a few steps.

Life has become painful, tiring, and difficult for Mat, and he is ready for it to be over. And I am ready to let him go.

At least for today, I am not afraid.

Weeks

2011-01-31T13:30:00.000-08:00

I don't know how to write this.

I keep sitting down, staring at the computer, and getting up again. Trying to think of some light-hearted twist to this. But there is not a damn thing funny about this.

Mat probably has a few weeks to live.

Now my stomach is starting to hurt and my heart is pounding and my shoulders are inching up toward my ears. I want to get up again, but I will finish this.

It should be no surprise to anyone who has read these posts that Mat has less time to live rather than more. Mat is on hospice. But I really, really believed that Mat would hang on for a year. Or more. People do.

But he has been getting steadily worse since starting hospice two months ago, needing ever-increasing doses of pain medication to be comfortable, having more and more difficulty leaving his bed, and becoming increasingly tired.

Despite these struggles, Mat seems more clear-minded and purposeful than I have seen him in a long time. He is calling friends, talking with the kids, and tightly packing his schedule with visitors. (He is not, however, checking email, because his pain medication has made his vision blurry and he can't read email.)

Where does that leave me?

Well, for one, still holding out a sliver of hope that all of this activity will look really silly when Mat is still here 10 years from now. At the same time, planning a funeral.

If you'll excuse me, I think I need to go throw up.

Hospice

2011-01-01T18:36:00.000-08:00

It was not a happy day when Mat, Dr. Dave, and I decided that there were no more cancer treatments worth trying. Last year alone Mat tried three different chemotherapy regimens, three rounds of radiation, had two hospital stays, and two bone fractures.

There were one or two chemo options to try, but we were looking at Phase I clinical trials with no track record outside a petri dish.

Not very attractive.

So Mat switched to hospice, where the focus is on comfort rather than cure. Hospice is a service that helps people who have six months or less to live to spend their remaining time at home rather than in a hospital. Mat has a primary hospice nurse, Klara, who we like and who seems competent. She visits at least once a week, orders all of Mat's prescriptions, and coordinates other care that he needs. My only complaint about her is that she's tall, blonde, stylish, and thin. Ugh.

We also have a chaplain and a social worker, and Mat's prescriptions are delivered to our door (I do NOT miss the twice-weekly trips to the pharmacy). We still meet with Dr. Dave every other week, which is comforting.

Although Mat has only been on hospice for a few weeks, we are already pros. We know, for example, that although most of them are competent, some of the hospice nurses do not have the sense they were born with. Leo, for example, sat like a bump on a log in a chair in Mat's room, saying nothing for over half an hour. Eventually he did ask some questions, but they were all directed at me, as though Mat were 5 and I were his mother. "When did he last take his pain medication?" and "What has Mat's activity level been today?"

Ginny talks to us both like we are 5. "This pump," she said today, gesturing to the pump that delivers Mat's pain meds intravenously, "has a LOCK-out feature (can you say LOCK-out feature?). It is set at level ONE. I need to change it to level TWO."

Mat owes his sanity to Michelle, who spent the night at our house, periodically talking on the phone to Mat's palliative care doctor and furiously re-programming Mat's pump, helping to end a four-day-long pain crisis.

Apparently she arrived at our house from the tropics, however, because she set the thermostat -- there's only one in the whole house -- so high that the temperature on the second floor reached 82 degrees. I went downstairs from our blissfully unheated attic to fetch Michelle at 4:30 a.m. for an intervention. As I walked past the kids' bedroom, they were both awake, flopped over their beds with their shirts off.

"Mom, we're SO HOT. We can't sleep. Can't you turn down the heat?"

The whole four-day episode was a bit of a nightmare, but we're glad Mat didn't have to spend that time in the hospital, even if we were a little toasty overnight.

Hospice is hard to get used to. No one draws Mat's blood anymore to check levels of liver function, kidney function, or any other kind of function. There are no more scans scheduled.

Some things never change, though. Like the fact that we are the cutest couple in the UNIVERSE. And the fact that we have some of the best friends in the world.

Blink

2010-11-16T20:49:00.000-08:00

About two months ago, Mat's hip and lower spine started hurting, and he began having more and more trouble walking. When he couldn't walk more than a few feet at a time because of the pain, he finally said something to Dr. Dave who shipped him directly to radiation. Within a week, Mat was much improved, and by the time the round of radiation was over (round number four, if you're counting), Mat was practically skipping.

I'm exaggerating a little, but there were motorcycle rides, a trip to the Vanson Leathers factory in Fall River for a motorcycle jacket with buddy Joe, and visits with friends. It was great.

It was also short. If you blinked, you missed it.

The last day of radiation was two weeks ago yesterday, and today Mat called his doctor to say ... that his hip hurts so much he can't walk.

After a day in the emergency room repeating the above story to various doctors ad nauseum (I heard it three or four times and I couldn't stay the whole day), Mat has a diagnosis and a plan.

His pelvis is fractured, and so is his sacrum. (What's a sacrum? It's the triangular bone at the back of the pelvis, between the two hip bones.) A scan today showed significant new tumor growth in Mat's bones that are causing the fractures.

That's the diagnosis. The plan is to consider yet another round of radiation (number five) and to attach Mat to a pump that will intravenously administer pain medication as needed. Mat feels fine when he's lying down and even in some sitting positions, so he will be able to give himself a boost of pain meds when he needs to get up and walk.

Mat is spending the night in the hospital to get all this sorted out, and I should be able to pick him up "first thing tomorrow morning." I believe that's hospital speak for "noon."

It seems pretty clear that the chemo he's now on -- a combination of cysplatin and irinotecan -- is an abject failure in the bone tumor growth suppression department. Mat has not seen Dr. Dave yet in this latest installment of As The Cancer Grows, but his inclination right now is to quit chemotherapy.

Mat is seven weeks into this chemotherapy regimen -- the one he has been suspecting will be his last. He has an infusion every two weeks, and it flattens him for days. He doesn't know yet whether the drugs are having any effect on his soft-tissue tumors, but chemo that doesn't keep the bone tumors in check and makes him sick about half the time does not seem worth continuing.

It will be good to have Mat home tomorrow.

Old broken tools

2010-10-20T19:44:00.000-07:00

I had a dream a few weeks ago. People were chasing me, over hills and around trees, through gullies and up the rock face of a precipice. I knew they wanted to hurt me, take something important. Something very important, like maybe a kidney.

More than once, just when I thought things looked hopeless, to my great relief I found a weapon. Each time I used my weapon to beat back my attackers, but it never turned out to be quite the tool I needed to finish the job. The shovel I found had a loose handle, and the baseball bat turned out to be a hollow, lightweight stick. Escape was always temporary, and my weapons were never sufficient for the task.

I woke up exhausted, but with my kidneys intact.

Later that day, a friend asked why I looked so tired, and I told her about my dream. “Maybe it means something,” I said, “but I don’t know what.”

We were waiting outside the elementary school gym for our five-year-old boys to finish karate class.

She looked at me. “Are you kidding me? That dream is your life.”

Ah. The clarity of an outside perspective.

Over the last two weeks, I've come to see Mat's chemotherapy as the weapons in my dream. Mat has already decided that the treatment he's on now is likely to be his last, and my dream is helping me to accept his decision. The drugs are old, broken tools. They may buy a little time, but the end result is inevitable, and the battle is exhausting. And sometimes the fighting doesn’t even make the battle last longer, it just makes it more tiring.

Putting the weapons down is frightening. They feel like the last barrier between here and that grassy cemetery. It helps to see them for what they are, though, and I don't want to be the person who presses unwanted treatment on someone else because she’s not ready to face the enormity of her loss.

Is it possible to be ready? In my academic head I think it is. In my actual head I think it's time to get out of the boat and take a step onto the water.

This is rated PG-13

2010-09-24T19:55:00.001-07:00

I'm beginning to hate September.

I enjoy a colorful leaf as much as the next New Englander, but this is the third September out of four when the warm glow of a summer blissfully free of crisis has been doused with a bucket of cold water.

(Notice that my standards are not that high. Our summers are not free of cancer, or chemo or pain medication or infusions, just fear of imminent death, which makes them delightfully low-stress.)

The latest treatment Mat has been on is not working. I really thought this drug was on our side -- treatments were only every three weeks and side effects were mild. It was a kinder, gentler drug that apparently is useless. Some tumors have grown as much as 20 percent, including the one in his rib that was radiated about a year ago and is again approaching the size of a lemon.

I don't know if he meant to be, but Dr. Ryan was more fatalistic today than he's been before.

"You could just say, 'Enough's enough. I'm done with chemotherapy,'" he said.

Quite frankly some days Mat does want to be done with chemotherapy for good, even the kind and gentle variety. It looks like he may have one more try left in him, though, so next week he will start a platinum-based chemotherapy treatment. It's an old standard for treating neuroendocrine tumors, and Mat's disease has responded to old standards in the past, so we're trying to remain hopeful.

And besides, he'll finally get platinum membership status.

(You know I had to say that, right? Do you know what else I have to say? Damn. Fill in fifty more of your own favorite words and you'll have a window into my head for today.)

At the same time Mat seems bent on destruction (and not via motorcycle), the boys are wonderful. They're now both at the same elementary school, and they often cross the street after school to the park to play soccer. Most of the kids who play are Ian's fourth- and fifth-grade friends, and they're very kind to tolerate a kindergartener.

The other day, though, one of them said to Colin, "Little kids aren't playing today."

Ian put his arm around Colin and said, "We're a package. We play together."

They both played, and when Ian ran down the field with the ball later in the game and saw that the goalie had wandered away from his post, he stopped just short of the goal and passed it to Colin, who scored.

The juxtaposition of disaster and heart-melting brotherly love makes a very sharp contrast.

How can life be so good and so painful at the same time?

Not Coupled

2010-08-30T19:02:00.001-07:00

I wrote this awhile ago and sent it to the Boston Globe Magazine's Coupling column for consideration. They didn't want it -- too bad for them.

My husband and I are always late to his weekly appointment at the Tucker Gosnell Center for Gastrointestinal Cancers at Massachusetts General Hospital.

Today is no different. Like all Mondays, I wake the kids, harangue them through bowls of Cheerios and into clothes (no jeans, only “soft pants” for my four-year-old), and make lunches (peanut butter again). I walk my third grader to school, and then, at the last possible minute, I wake up my husband, Mat. We load ourselves in the car, drop off the preschooler, and wind through the rush-hour traffic to MGH.

To save time, I drop off Mat in front of the Yawkey Center of MGH and then park the car in the underground garage. When I arrive on the seventh floor of Yawkey, Mat is already checked in, wristbanded, and waiting for a blood draw.

I join him and look around. The people in the waiting room today are a bit younger than usual. There’s a couple I would guess are in their 30s, professional, the woman with a Louis Vuitton handbag. They both look like they’ll go to work later. They don’t talk to each other. The man flips through a Time magazine. They could be waiting to see the dentist.

There’s a couple with someone I assume is their 30-something daughter, a couple in their 50s reading paperbacks, and the couple across from me is in their 60s, wearing jeans and white tube socks. The couple nearest me is friendly looking, the man with a handlebar mustache and the woman with bleached hair. They’re looking around at other people, interested, with open expressions. They could be waiting for a table at a restaurant.

The woman in another couple, late 50s or early 60s, is resting her head on the man’s arm. They are the only people here who are visibly burdened by the possibility of loss. A Hispanic woman in her 60s is with someone who looks like he may be her son. There are two women chatting about vacation plans. One of them, a woman in her 60s, looks spirited – she’s wearing a colorful blouse and scarf and lots of jewelry. She’s not going to let this defeat her.

In the entire waiting room there is only one person here alone.

Like nearly everyone else, I am here in a couple. My husband, in his 30s, is the cancer patient. He’s in jeans and a basketball jersey with Larry Bird’s name on it – a gift from one of the volunteers in the infusion unit.
Mat is not going to work after his appointment today. After nearly four years of regular visits to this cancer center, five different chemotherapy regimens and two surgeries, he is on disability leave from work. I’m the partner, also in my 30s, and like nearly everyone else, I could be waiting to go to the dentist.

Except a partner is not required for a visit to the dentist.

Cancer, on the other hand, requires companionship.

This is a place full of emotional roller coasters: “I’m sorry, you have cancer.” Or, “The chemo is not working. The cancer is growing. We need to find something else.” Or, worst of all, “I’m sorry, there’s nothing else we can do.”

Not everyone here will have a bad day today. Some people, more self-actualized than I am, have accepted this experience and are at peace with it. Others will have a really good day: “I think it’s working.” Or, even better: “There’s no sign of cancer anywhere.” They’ll go home and celebrate, and then come back three or six months from now and hope to hear the same thing again.

I’ve heard nearly all varieties of this speech. My life is a snow globe, picked up and shaken every few months. When the water has finally stopped swirling around me, and the snow has settled on the ground again, it’s time for another good shaking.

Today’s conversation will not be momentous: “Your blood counts look good. You can head up to the infusion unit.” This is our new normal, at least for a few months.

I sometimes wonder who will come to the hospital with me if I ever get cancer. I’ll want to be here as part of a couple.

This couple.

What did you say?

2010-07-23T20:07:00.000-07:00

Dr. Dave is good at getting straight to the point when he has results from a scan to report. He knows we've been gripping the edges of our seats for the last half hour (or hour, or two hours, or however long we've been waiting) and want to be put out of our misery.

But today we met with Terry, Dr. Dave's nurse practitioner. She is not as good. After she came into the exam room, she tinkered around with Mat for awhile, listening to his lungs, his heart, checking his ankles for swelling (which apparently would portend dreadful things), and asking about his bowel movements.

(Frankly, I'm a little tired of these discussions. I realize we've been married 12 years and happily share just about everything, but there are limits to the amount of my life I want to devote to discussing Mat's bowel movements. I reached that limit sometime in 2007.)

To be fair, Mat's CT scan this week was routine -- just done to establish a baseline for evaluating the effectiveness of the new clinical trial drug he started today. And so we weren't really white-knuckled, or about to throw up, just curious. Would the cancer be a) about the same; or b) a little bit worse?

Terry had not seen the scan results, so she pulled up the radiologist's report on the computer and laughed.

Because the correct answer is actually c) a little bit better.

What did you say?

Mat had a scan barely seven weeks ago that showed slow progression of cancer from the previous scan. This scan showed that Mat's tumors are measurably smaller. Not just the ones blasted by radiation in June, but the other ones, in his liver, and abdominal cavity. The ones that have been untreated since the end of May.

Terry pulled up images from the current scan and the previous scan, so we could compare. One large tumor in Mat's liver looks unchanged. The other large tumor shrank from about 75 millimeters to about 60 millimeters -- that's 20 percent. Another tumor shrank by a similar amount.

"How common is this?" I asked Terry.

Her answer: "Not common." Terry was able to produce only one other example in her career of unexplained pancreatic cancer shrinkage.

"Maybe things just got inflamed and they're settling down," she suggested.

Hmm ... could be. It might be just a fluke. Or it might not.

I swear I'm not getting my hopes up ... but of course you know what I think.

Finally

2010-07-02T02:12:00.000-07:00

Three long weeks after starting radiation, Mat is finally done! He had a higher dose this time than in his previous two rounds, because there were two places to radiate instead of one, and it showed. Mat has been really tired and had to rely more on taxi service for his daily appointments than his motorcycle. The radiation has helped, though -- he's walking better and in noticeably less pain than before.

Today we're meeting with Dr. Ryan to go back to the drawing board for a new chemo regimen for all those tumors we can't radiate. It looks like there's a clinical trial that Mat may be eligible for -- hopefully we'll find out today. It's amazing that every time we think we're at the end of the list of treatments to try, Dr. Ryan always seems to have something up his sleeve.

In between radiation appointments, we've stayed busy watching Ian's baseball games. He had fun this season trying his hand at pitching, and his team won the town championship for their division. (Ian was just happy to get a really big trophy.)

Bone Destruction

2010-06-03T19:32:00.001-07:00

We got the results from the latest scan today.

I could tell immediately from Dr. Ryan's expression that the news wasn't great. The cancer is technically stable -- the growth between this scan and the March scan is within the margin of measurement error. But compared to the December scan, done before Mat started the RAD001, it's clearly worse.

The soft tissue (pancreas, lungs, lymph nodes) tumors are about 10 percent larger, which is not the end of the world. The bone tumors, though, are 30 percent larger. The one in his spine is causing some back pain, and the one in his pelvic bone has caused a small fracture.

No wonder Mat's having so much trouble walking.

So Mat is dropping out of the clinical trial. The good news about that is that he can start radiation for the bone tumors, a treatment that wasn't permitted during the clinical trial.

Mat's last round of radiation worked quickly and had limited side effects, so he's quite looking forward to this round. Three weeks of daily visits to the hospital is kind of a drag, but that annoyance pales in comparison to the prospect of Mat being in much less pain within a couple of weeks.

After radiation, then it's back to chemo for the soft tissue tumors. We're not sure what kind, but are confident that Dr. Ryan will come up with something good.

In the meantime, Mat has an excuse to ride his motorcycle to MGH every day.

Motorcycle Cure

2010-05-16T20:02:00.000-07:00

It's a little-known approach to curing cancer, but Mat decided to give it a try: the Motorcycle Cure.

Actually, about a month ago, Mat had a dream. He was riding a motorcycle in upstate New York with a buddy.

When he woke up, Mat was a man on a mission. Two weeks later he had his learner's permit, and one week after that he had taken and passed a two-day motorcycle riding class and earned his motorcycle license. Three days after that, a brand new (slightly used) Triumph motorcycle in Lucifer orange and silver was sitting in our garage.

Mat doesn't believe in wasting time.

In the week or so since then, Mat hasn't been able to do much riding -- he had his shot of SOM 230 (chemo) last week, which puts him out of commission for a few days, and he is having a little trouble walking.

Don't worry, though -- he will.

Although my official position is that motorcycles are dangerous and Mat's crazy to ride one, I secretly suspect that a motorcycle ride a couple of times a week might be just what the doctor ordered.

Five year anniversary

2010-04-18T23:59:00.000-07:00

This month marks the five-year anniversary of Mat's cancer diagnosis.

It's hard to sum up my feelings about that, but I'll try.

1. It's amazing

I remember talking on the phone to a radiologist friend after we found out that the euphemistic "mass" in Mat's abdomen was cancer. Mat was still in the hospital, recovering from surgery, and I was sitting on the floor in my bedroom. I seem to remember that it was dark, but I don't know why I would have had the lights off. Maybe it just felt dark.

My friend was saying, "Of course we know that miracles can happen, but it's good to have a clear head about the facts. We don't know what type of pancreatic cancer Mat has, but let's assume it's the more common kind. Localized pancreatic cancer has a five-year survival rate of 20 percent."

The conversation went on a little longer, but I have no idea how I held up my end because my head was spinning. "Twenty percent? Five-year survival?" I couldn't grasp those miserable prospects for surviving the first five years, let alone understand why survival was measured for only five year. In five years, Mat would be 39. What about the other 40 or so years he owes me? What about growing old together?

Now I understand that five years after a cancer diagnosis, people are mostly either cured or dead. Mat is not cured, but he's NOT DEAD!

Or, as he likes to quote from Monty Python and the Holy Grail, "I'm not dead yet." (Insert British accent here.)

2. It's stressful and sad and hard

Although Mat has spent nearly two of the last five years in remission, the last 2 1/2 years have been spent in an unrelenting struggle with cancer. He's had three major surgeries, a sprinkling of non-surgery-related hospital stays, five or six (seven?) different chemotherapy drug regimens to try to control the cancer growth, and a slow progression through three major types of narcotics to deal with the pain associated with cancer.

Life is constantly changing, sometimes in a way that seems like a slow downward spiral. Constant adjustments to a "new normal" are hard to keep up with, especially when the new normal seems to involve less -- less time spent out of bed, less energy, less strength, less time left.

3. It's amazing

I've spent some time thinking about my situation, and constructing a strange sort of ideal world. In this world, Mat still has cancer. There's nothing I can do about that. But in this imaginary cancer-world, I have all the things I need to make life as good as possible for Mat, the kids, and me. Here's what I would have in this ideal world:

1. A friend I could call anytime, day or night
2. Help with childcare as needed for medical appointments, errands, and R&R
3. Help with household chores like food shopping and preparation
4. A Mat who is willing to keep trying to stick around for me and the kids as long as possible
5. Money to pay the mortgage
6. A prescription for anti-depressants, as needed
7. A partner who understands my particular brand of insanity and loves me anyway
8. A steady flow of inspiration and wisdom from books, friends, talks
9. An awareness of God's love for me

The list goes on, but it didn't take me long to see that my ideal world ... is my world. Friend I can call at 3 a.m.? Check. Help with childcare? Check. Food that can be on the table with less than five minutes of prep work? Check. Money to cover the mortgage? Check.

What's more, after I made my list I started to see ways that my real world was better than my ideal cancer-world. Is there even one house anywhere in the whole Boston area that dampens noise like ours? I think the kids could throw large rocks at each other downstairs and the oasis of quiet that exists in the third-floor master bedroom would not be disturbed. (Heads up: if you come to our house and ring the doorbell, Mat will not hear it. Bring a cell phone and call him from the front porch instead.)

Now if we could just get the hot water heater to be a little less temperamental ...

Room With a View, Part Deux

2010-03-11T20:09:00.000-08:00

It's been roughly a year since Mat's last hospital stay, and we had just started to worry that Mat would lose his frequent visitor status when: SURPRISE! Mat won a round-trip ticket to MGH for a few nights.

You can relax: this time it's not an emergency.

After six weeks or so of adjusting pain medication doses to no avail, Mat's doctor finally decided it was time to switch to ... methadone. Apparently in addition to being a good way to wean off of heroin, methadone is also a great pain reliever. It's also takes a few days to take effect, and it's hard to get the dose right, so making the switch from Fentanyl requires a hospital stay.

After a couple of months of being nearly constantly in pain -- recently unable to get out of bed for more than about 90 minutes a day because of the discomfort caused by any kind of movement -- Mat was really ready to try something new.

And after his first day on methadone, today, Mat seemed like his old self. It was good to see him again.

And he got a room in the Phillips House, which is the Ritz Carlton of hospital rooms. He has a large, private room with wood floors, a sofa, a desk, a fridge and a great view of the Charles.

No stationery, though.

CT scan results

2010-02-10T18:50:00.000-08:00

Mat got CT scan results today -- his first since starting the latest clinical trial. The results are in, we've tallied the judges' scores, and ... no growth, no shrinkage.

We are hugely relieved that the cancer has not grown. Just before getting CT scans and results every two months, we start microanalyzing how Mat is feeling to try to prepare for the results we might hear. Mat has been in more pain than usual lately, so we both thought the news might be bad. It turns out that Mat is just developing more tolerance to his pain medication, so he has a new higher dose that we're hoping will help.

Someday all the anxiety that builds up between the CT scan and getting the results up to a week later is all going to boil over and I'm going to throw up in the doctor's office. (Mat's already done this, but I think cancer treatment may be playing a role in his case.) Today I came close.

The results re-set the clock, and now we have a plan for the next two months: stay on the clinical trial, show up at the hospital every Wednesday for bloodwork and vital signs, and we'll hope for more of the same (or better!) two months from now.

Thanks for all your prayers, well wishes, and love. They really keep us going.

Hey ... you stabbed me!

2010-01-31T18:27:00.000-08:00

One of Mat's ... favorite parts of the latest clinical trial has been the twice-daily shots of SOM230. Some of these he gives himself, in the leg. The back of his arm is harder for him to reach, so these are my job.

The process is simple: snap the top off the glass ampule, draw out the SOM230 with a filter needle, replace the filter needle with a thin needle (it won't hurt, I promise). Then, pinch the back of the arm, hold the needle poised, overcome decades of conditioning (do not stick people with sharp objects!), and ... stab the arm. Sometimes it goes well, others not quite so much. Sorry! That wasn't supposed to hurt!

Fortunately, the rash of stabbings in the neighborhood seems to have subsided. The twice-daily shots have been replaced with a once-monthly long-acting version of the drug. Whew.

In the meantime, the upside of recent frigid temperatures is a beautifully frozen neighborhood pond. The boys and I went skating today while Mat reported for nap duty. Colin, in his second attempt at skating, pushed crates around the pond at the speed of light and Ian practiced hockey stops. It was a nice day.

Clinical trial, day 2 ... or 28, or something like that

2010-01-14T18:34:00.001-08:00

The last month has been a blur. Sometimes life is like looking at a television screen with static on it (remember static?). If you concentrate hard, you can just begin to make out the difference between Godzilla and the girl, when the screen shifts, or the big black line comes rolling up the screen and now the top of the picture is on the bottom of the screen.

The clinical trial has been a little staticky. We've had to hold the rabbit ears at just the right angle to get a clear picture, when we lose it, and then ... oh that's the problem -- I wasn't holding my left leg quite high enough or pointing my toes.

On the up side, the high blood sugar Mat experienced shortly after (hours after) starting his new chemo regimen has settled down. It jerks up and down once in awhile, but not as high as the record set on Day 1, and is typically in the higher-than-average-but-not-high-enough-to-worry-about range. It's possible that the mildly elevated blood sugar is contributing to Mat's increasing fatigue (Mat has increasing fatigue? is that even possible?), but we don't know.

On the down side, Mat's blood pressure is too low. He's on the low side to begin with, and the combination of drugs and their side effects seem to make it lower. It's unnerving for Mat to be greeted upon arrival at MGH with nurses who take one look at him and immediately ply him with an array of beverages and connect him to an infuser for some heavy-duty hydration.

All of this led to a week-long break in the clinical trial for Mat to recover from the side effects, and to start again on a lower dose. The side effects now seem to be milder, and Mat's blood pressure is back up a bit, but of course there's still snow on the television screen of life. Is the lower dose high enough to be effective? Will the side effects accumulate again, causing worried-looking nurses to rush about?

Tune in again next week for another exciting installment of As the Static Turns.

Blood sugar

2009-12-16T18:11:00.000-08:00

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?

November

2009-12-06T19:37:00.000-08:00

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 clinial 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!

I Spoke Too Soon

2009-10-31T19:20:00.000-07:00

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.

Positively radiant

2009-10-27T03:43:00.000-07:00

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?)

What a day dad had

2009-10-07T20:34:00.000-07:00

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.

YAY!

2009-09-16T19:10:00.000-07:00

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.

Sleeping Beauty, Part II

2009-09-09T05:02:00.000-07:00

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.

The Gift of Summer

2009-08-31T19:01:00.000-07:00

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.

Sleeping Beauty

2009-08-01T19:00:00.000-07:00

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.

Tardive Dyskinesia

2009-07-14T19:09:00.000-07:00

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.

... and then Ian stole home

2009-07-07T19:11:00.000-07:00

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.

Happy Dance

2009-06-26T03:36:00.000-07:00

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?

Pie Friday

2009-06-05T15:42:00.001-07:00

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?)

Introducing Mat: Cylon Model #13

2009-05-24T03:35:00.000-07:00

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.

Salvation in a Sausage

2009-04-29T23:08:00.000-07:00

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.)

Power Port

2009-04-26T20:03:00.000-07:00

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.

DNR

2009-04-12T07:42:00.001-07:00

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.

Mat's home

2009-04-11T09:32:00.000-07:00

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.

What just happened?

2009-04-03T21:19:00.000-07:00

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?

Stable Bad

2009-03-27T18:45:00.000-07:00

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.

It's working!

2009-03-14T11:21:00.000-07:00

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.

Hotel MGH

2009-02-22T17:18:00.000-08:00

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.

He's in!

2009-01-31T18:53:00.000-08:00

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.

Fingers, toes, arms, and legs crossed

2009-01-28T20:24:00.000-08:00

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.

Mat and Steve Jobs

2009-01-05T18:14:00.001-08:00

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.

I Really, Really Miss Utah

2008-12-02T10:30:00.000-08:00

Don't get me wrong -- 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.

Shopping Spree

2008-10-26T17:51:00.001-07:00

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!

Younger, more beautiful-looking skin

2008-09-24T17:58:00.000-07:00

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.

Cautious Optimism

2008-09-09T12:39:00.000-07:00

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.

What else can I say? It stinks!

2008-08-26T18:21:00.000-07:00

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!

All that and a bag of ... shingles?

2008-07-21T19:25:00.000-07:00

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.

Plan Z

2008-07-16T18:49:00.000-07:00

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.

A Walk In the Woods

2008-06-21T12:21:00.000-07:00

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!

Roto-rooter

2008-06-08T20:23:00.000-07:00

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.

Chemo Holiday

2008-05-13T20:03:00.000-07:00

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

2008-05-13T19:16:00.000-07:00

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.

The Truth About Cancer

2008-04-17T00:45:00.000-07:00

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.

Two Weeks! I Want My Two Weeks!

2008-03-22T19:45:00.000-07:00

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!

Hi-Def

2008-02-11T10:04:00.000-08:00

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 ...

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

2008-01-24T18:49:00.000-08:00

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!

26 Days

2007-12-12T19:28:00.000-08:00

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!

Two Days Down ...

2007-11-18T20:00:00.000-08:00

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 ...

So Far So Good

2007-11-08T21:54:00.001-08:00

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.

The Watchful Waiting Is Over

2007-11-07T19:17:00.000-08:00

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.

Yay!

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.

Game 2

2007-10-27T20:04:00.000-07:00

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.

The Brown Journal

2007-10-17T19:43:00.000-07:00

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.

Watchful Waiting

2007-10-08T18:45:00.000-07:00

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?

Hangin' in Hangzhou

2007-10-01T19:35:00.000-07:00

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.

Labor Day weekend in Maine

2007-09-10T19:24:00.000-07:00

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.

Go Glaxo!

2007-09-03T19:53:00.000-07:00

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!

"THAT was a NICE fluke!"

2007-06-04T19:05:00.000-07:00

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.

You want funny? We've got funny

2007-03-18T18:27:00.000-07:00

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 (now Dr. House on the TV show "House"). We like "House," 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!

The Results Are In And ...

2007-02-13T20:39:00.000-08:00

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

Woohoo!

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?

Happy New Year's

2007-01-17T19:05:00.000-08:00

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 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

Home Improvement

2006-11-29T19:05:00.000-08:00

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.

Hi-ho, hi-ho

2006-10-03T09:50:00.000-07:00

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.

Six Months

2006-09-21T02:28:00.000-07:00

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.

Walking on Water: A How-to Guide

2006-09-10T06:03:00.000-07:00

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)

Laraine Wilkins

2006-09-05T02:17:00.000-07:00

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."

The Tortoise and the Tortoise

2006-08-28T12:18:00.001-07:00

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!

Homecoming 2006

2006-08-19T17:31:00.000-07:00

Mat's home! He made the real prison break this afternoon about 5. 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.

Prison Break

2006-08-18T07:48:00.000-07:00

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.

Comic Relief

2006-08-15T19:31:00.000-07:00

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!

WHEW!

2006-08-14T17:24:00.000-07:00

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.

The Fine Line

2006-08-07T19:05:00.000-07:00

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.

Surgery Scheduled

2006-07-30T12:20:00.000-07:00

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.

The Surgery

2006-07-29T10:25:00.000-07:00

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

2006-07-29T10:20:00.000-07:00

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

2006-07-29T09:41:00.000-07:00

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.