Who will kill the spiders?

The so-called “Murphy’s Law” is the adage that anything that can go wrong, will go wrong.

I don’t buy it.  Yet, sometimes, our best-laid plans slide sideways.

After Mark was admitted to the hospital about ten days ago, we waited for endoscopy results to see if they would reveal any clue about why his nausea was so unrelenting.  Despite multiple anti-nausea medications, he couldn’t eat or drink anything without vomiting it back up almost immediately.  He was wraith-thin and needed IV hydration.

In hospitals, it seems as if nothing moves very quickly.  The morning after the endoscopy, I went early to the hospital, to wait with Mark for the doctors to tell us the results.

We waited.  The nurse paged the doctors.  We waited longer.  The nurse paged the doctors again, but said she had no idea when they’d actually appear.  We waited another couple of hours.  Mid-day, I dashed home for a few minutes and, sure enough, that’s when the hospital team appeared in Mark’s room.

And so it turned out that Mark himself, in a remarkably cheerful voice on the phone, told me that the doctors said that there was no more treatment to be undertaken.  The tumors had invaded Mark’s stomach, and his stomach no longer functioned.  His stomach was destroyed.  “It’s the end game,” he said.

It’s a cliche, but there are moments when time really does stand still.  I can see myself, absolutely frozen in the bathroom, holding my cell phone, staring into the mirror, having no idea what I was going to do next.

Dr. T, one of the hospitalists, called me a few minutes later.  He explained the test results in more detail, including why a feeding tube into Mark’s stomach or IV hydration wasn’t going to work.  There were long silences in our conversation.  To his credit, he didn’t rush me.

Of course there is always the biggest question, the question you don’t want to ask but have to:  How long does he have?

Dr. T didn’t have a good answer.  That’s the question, he explained, that doctors are really bad about answering.  He said maybe six months; no, maybe three months, maybe less.

We won’t get our year together after all.

And so it seems we’ve turned the final corner, though all we really know is that in the not too distant future, Mark won’t be here.  We have to focus on saying what needs to be said, to each other and to the people we care about.  Mark has to be made as comfortable as possible in the coming weeks and months.

During these past months, denial has been my best friend, and I haven’t looked the future full in the face.  We knew from the initial diagnosis that the prognosis was grim.  Statistically, Mark had a death sentence from the very beginning.  But up to this point, I always held out the sliver of hope that the next treatment would work, that a new drug cocktail would be the one to do the trick.  

I just can’t imagine life without Mark.  We are like two trees that have intertwined and grown together, leaning on each other, through all these years.  I’m a capable woman.  I can file my taxes and manage my money and keep my household.  But what about all the small things that have tied us together all these years, that have made the two of us into a “we?”

I mean, who will kill the spiders?

I am not terrified of spiders but I don’t like them.  As long as they stay outside, I can ignore them.  But when they invade the house, I always shriek for Mark, who comes running with a paper towel and a smirk on his face to dispatch the offensive critter.  My hero.

I guess I can learn to kill my own spiders.  But I’m not sure I’ll ever really believe, when I turn over in sleep late at night, that Mark isn’t right there with me, just a touch away.  

Our life as a board game--

Our progress through Cancer Land is starting to feel like a game of Snakes and Ladders, the ancient Indian board game where your throw of the dice either lands you on a square sending you upward on a ladder, or drops you onto a spot nested with a snake that slithers you downward, backward in the game.  Inch forward—whoops, misstep, slip down another snake—land on a square to climb up another ladder.  Life is a bit of a muddle at the moment.  But I think we just landed on another snake.

Dr. C walked into our appointment last Thursday with her usual bright and careful smile, pausing to shake both our hands.

“How are you feeling, Mr. Ashburn?”

          (Tell us about the CAT scan!)

“Are you in any pain?”

          (Tell us about the CAT scan!)

“We don’t have all your blood work yet, but this looks pretty good…”

          (Please, please, just tell us about the CAT scan!)

Why are we so polite?  Why do we sit there, with bated breath, waiting for her to get around to the most important point, while all we want to know is WHAT ABOUT THE CAT SCAN.

“Unfortunately…the CAT scan shows new tumors…”

We suspected that the news would be bad.  Mark’s ascites (accumulation of fluid in the abdomen) has accelerated again, and since Mark’s diagnosis, this has been a consistent indicator that a treatment is not being effective.  With the ascites, Mark has multiple intestinal problems, and the weight of the fluid on his body makes sleep difficult.  He also has no appetite.  I can hardly believe that anyone can sustain life on the tiny amounts of food he manages to keep down.

The CAT scan shows that the “old” tumors have grown only slightly, so they are still being mostly controlled by the current medication.  However, two new tumors have emerged in Mark’s liver.

These results mean Mark is done with this clinical trial.  We will never know if the second drug he was taking was the experimental drug or the placebo.  Dr. C proposed, and we agreed, that Mark will begin a new course of treatment.  This will be the third.  This course will include taking Xeloda, the drug we know he was taking in the clinical trial, and to that will be added a once-every-three weeks infusion of Oxaliplatin, which he hasn’t taken before.  

Dr. C tells us that the average period of effectiveness for this combination is six months.

However, Dr. C had told us that the average period of effectiveness for Xeloda alone (assuming the second drug in the just-finished clinical trial was a placebo) was four months, yet we saw a resurgence of tumors at six or seven weeks.  Welcome to the uncertain world of averages…

I again asked Dr. C about immunotherapy trials, because I’ve learned that some of them are very promising and are producing good results.  She was not encouraging.  Drug companies want a cadre of patients who present the very best chance of showing a new drug’s effectiveness.  Because Mark has ascites, and ascites is a very bad outcome indicator, she told us it will be unlikely that he’ll be accepted in a trial, even those that are open to patients who have attempted and failed at other courses of therapies (like Mark).  

(I shudder at the language.  We are trying so hard, and yet we’ve “failed.”)

And, she tells us, none of the immunotherapy trials so far have shown any success with pancreatic cancer.

She looks me straight in the eye.

“Zero,” she says.

Dr. C sends us off with information about enrolling in the “Know Your Tumor Initiative” sponsored by the Pancreatic Cancer Action Network.  We called the network this morning. If Mark is accepted in the program, they will use his biopsied tissue to provide molecular information about his tumors, to see if we can identify the specific mutations involved, and they can then (possibly) connect us with potential treatment options, including clinical trials, that target those mutations.  No outcome is promised, but why not try?

I think they could have come up with a better name than “Know Your Tumor.”  It sounds too jaunty for me.  I don’t want to know Mark’s tumors.  I want to obliterate them from the face of the earth.  I want to crush them.  

We’re also going to make a run at the clinic at Bastyr Center, a well-known and reputable clinic for naturopathic medicine.  We aren’t expecting any cure from them, but they may have therapies that will help us with symptom management, especially Mark’s nausea and inability to eat.  I think at this point he’s tried six or more prescribed drugs to control his nausea, and none has worked.  (Thanks to the efforts of our wonderful friend Nancy, Mark also gave “vaping” marijuana a brief try.  At first, we thought it might work, but I think at this point his condition is just too extreme.)

This morning, I pulled out the paperwork we received last Thursday.  We are always given copies of the results of any tests, like the CAT scan and Mark’s blood work.  (At this point, I have enough paper to fill at least one file cabinet.)  Imagine my shock when I notice that the blood work report is for another patient, not Mark.  Panic, panic…what if they’re making decisions for Mark based on someone else’s blood work?  I made a quick call to the clinic, to confirm that the doctor had been looking at the right results.  There must have just been a mixup at the printer.  My oh my.  This process requires constant vigilance.  

The Caregiver's Lament:  of journeys, paths, rivers, tapestries and...kaleidoscopes


I hadn’t seen Joannie in several months, because she and her husband flee from Seattle every winter for warmer climes in Mexico, and then return each spring.  When we ran into each other at the pottery studio and she asked me how I was doing, I told her about Mark’s cancer.

It’s always hard to retell the story of Mark’s diagnosis.  Each time, there’s a bit of reliving the initial shock and pain.

Joannie hugged me and offered the conventional wisdom:  Make sure you take care of yourself.  Her advice for me:  Remember what they tell you when you’re on the airplane.  If you’re taking care of someone else and the oxygen masks descend, put yours on first before assisting another.

I’ve been offered lots of advice, and much of it is sound.  I’m a little tired of hearing about the complexity of life’s journey.  Life, I’m told, is a journey (some sort of modern version of Pilgrim’s Progress, I think), a path (winding through sunny pastures but also dark forests), a river (alas, with rapids and falls), a weaving (made beautiful by both the dark and light threads), and on and on.  At this point in my life, even my great love of metaphor is over-taxed.

The way I see it, life is a kaleidoscope.  You can stare in awe into the tube at the swirled patterns, but the slightest tremor will reshape everything, scramble all the bright and dark pieces and shoot them in different directions.  You can cherish a pattern for a brief moment in time, but then it’s gone, no matter how much you valued it.  It’s just gone, and that arrangement won’t exist again.  

I am taking care of myself, as everyone advises me to do, as best I can.  I know it’s important—if I get sick too, Mark and I are both toast.  But feelings don't track rational thought.  I feel guilty when I’m off at the gym or the pottery studio, uneasy that I’m not taking care of Mark.  I also feel totally irrational guilt because I’m in good health and he’s not.  When I savor a meal or enjoy the warmth of the spring sun on my face when I’m out walking with Rusty, I feel guilty because Mark is denied these simple pleasures.  Makes no logical sense, but there you go.

This last week was very difficult for us.  Mark’s intestinal problems intensified to the point that he was unable to eat for two days.  Every time he tried to eat anything at all, he vomited.  He has lost so much weight that he is almost skeletal, so he has no reserves to draw upon.  I was panicked.  I became a relentless nag:  “Try this chili, this flan will slide down your throat, just swallow a bit of jello.”  Finally, Mark’s doctor prescribed a new and very strong anti-nausea and appetite stimulant medication, and it seems to have worked.  He managed three small meals yesterday, and today he’s feeling stronger.  He and our son Chris headed to the golf course this morning to hit balls on the practice range.  

So, for the moment, the kaleidoscope pattern has shifted again, into a brighter place.  

Thursday is a big day for us, when we find out the results of Mark’s CAT scan.  I asked him what he wanted to do if the CAT scan reveals that the new drugs aren’t working.  He said we’d ask about options and make decisions based on the information.  That makes sense.

Please send your good thoughts our way….