Happy: A Quest for Life After Death

Tuesday, November 16, 2010

Blink

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.

Wednesday, October 20, 2010

Old broken tools

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.

Friday, September 24, 2010

This is rated PG-13

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.

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?

Monday, August 30, 2010

Not Coupled

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.

Friday, July 23, 2010

What did you say?

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.

Friday, July 02, 2010

Finally

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.)

Thursday, June 03, 2010

Bone Destruction


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.

Sunday, May 16, 2010

Motorcycle Cure


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.

Sunday, April 18, 2010

Five year anniversary

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 ...

Thursday, March 11, 2010

Room With a View, Part Deux

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.

Wednesday, February 10, 2010

CT scan results

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.

Sunday, January 31, 2010

Hey ... you stabbed me!

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.

Thursday, January 14, 2010

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

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.