The Kindness of Strangers

This week Mark completed cycle 3 of his chemotherapy regimen.  Now, much to our delight, he has two full weeks off!  Heaven!  We headed to the desert to soak up some sun, away from hospital beds and needles and chemical drips.  

After the next cycle, in about a month, Mark will have another CAT scan, and we’ll see what’s happening to the cancer tumors.  

Our first results, a few weeks ago, showed that the chemotherapy is shrinking the tumors.  Cancer cells, however, are nasty little beasties, and after a period of time, they often mutate to resist the chemotherapy. Then it doesn’t work any more.  If that happens, we will move to the yet-to-be-determined plan B, which could be a switch to a different chemical cocktail.  

Right now, we’re working hard to cope with the symptoms Mark is experiencing, more from the effects of the chemotherapy than from the cancer itself.  Chemotherapy targets cancer cells, but it also kills the body’s other fast-growing cells, suppressing hair and skin growth.  The chemicals cause extreme fatigue and nausea.  Our medicine cabinet is filled with rows of pill bottles, lined up like a battalion of soldiers, for combatting nausea, constipation, diarrhea, pain, fatigue, lack of appetite, and water retention.  Sometimes, for good measure, we get sent home from the clinic with syringes of medication which Mark self-injects into his abdomen to boost his white blood cell count.

Living in Cancer Land teaches you many lessons, most of them tough: the kick-to-the-stomach lesson that your life can be tipped over in an instant, and all your careful plans are out the window; the realization that there is nothing noble about suffering, but that the courage of terribly ill people to endure the hardships of disease and to persevere through pain and despair is astonishing, and both heartwarming and heartbreaking.  Lessons about patience, patience, patience as we wait and wait for appointments and treatments.  And I now understand that if there are angels among us, they manifest on earth as Cancer Land nurses.

Early on, during our first weeks in Cancer Land, I thought I was coping fairly well.  I didn’t cry all the time, and I focused my energies to try to unscramble our lives from the confusion that followed Mark’s diagnosis.  Then, on my way to buy groceries, I pulled my van out into a busy intersection and ran into the car stopped in front of me.

It was a very small accident but it felt like a crushing blow.  I stopped breathing as I pulled into a nearby parking lot, dreading a confrontation with the driver, as the car I’d hit pulled in behind me.  Yet another painful ordeal to come. 

The other car was old and shabby.  A bearded man in his early 30s emerged, frowning at me.  I started babbling about how sorry I was, and how it was all my fault (as of course it was).  He crouched down behind his car and ran his hand over his taillight, where my van had made impact.  Well, he said, nothing but a cracked taillight.

He stood up and smiled at me.  You can see, he said, that my car isn’t worth much.  He told me that he would have to get the taillight fixed, though, because he delivered flowers for a living and sometimes he had to make the deliveries at night, and he didn’t want to get stopped for a non-functional taillight. But it shouldn’t cost much to get it fixed, he said.  Maybe he could even do it himself.

I kept apologizing and offered to pay for the repair.  He said that he didn’t know how much it would be, not very much, but he would call me and let me know.

He said, “This isn’t a big deal.  Your day will get better.”  

And then, he hugged me (He hugged me!) and got in his car and drove away.

The next week, he left a message on my phone, saying that he had learned that he could replace the taillight for about $35, so if I could manage it, he would like me to send him a check for $35.

He had no way of knowing that my husband had just been diagnosed with pancreatic cancer.  He couldn’t know that I was going through the most challenging time in my life.  He had every right to be abrupt and nasty about my mistake.  He could have made an unreasonable demand for compensation.  Instead, to a complete stranger who had just rear-ended his car, he was caring and understanding and…really nice.  He was so darned nice.

We encounter strangers all the time who seem careless or thoughtless or clumsy.  It’s so easy to be irritated and disdainful of them.  If my car had been the one that had been hit, I think I would have probably faced the other driver with a cold and hard expression, at best annoyed and maybe even angry.  So this was one of my first Cancer Land lessons:  We see people all around us, blundering and stumbling, but we have no idea what they’re going through, what burdens they carry.  In each encounter with a stranger, we can only see the first layer of so many layers.  I know I may sound like Pollyanna, but this is a lesson I’m determined to take to heart.  I’m going to try, really try, to be more understanding and tolerant. I guess that’s just a small way of playing it forward.

Adaptation, Ready or Not

“Yes, change is the basic law of nature. But the changes wrought by the passage of time affect individuals and institutions in different ways. According to Darwin’s Origin of Species, it is not the most intellectual of the species that survives; it is not the strongest that survives; but the species that survives is the one that is able best to adapt and adjust to the changing environment in which it finds itself.” —Leon C. Megginson

Infusion Unit, Infusion Day #1, Week 1

We are bewildered.  We sit quietly in the waiting area until the beeper Mark is holding jumps alive with red lights, tremors and buzzing.  Then we are sent through the Infusion Unit door into a maze of curtained cubicles, a virtual horizontal honeycomb, each one identified by a number on an outcrop sign, like bus stops.  As we search for our assigned cubicle, we catch glimpses through curtains of quiet, shadowy figures reclining, all connected by transparent tubes to nearby hanging pouches, like subjects in some horrible experiment.  We hold each other’s hand tightly, and I can feel myself tremble.  I so want to be anywhere else but here.

Mark climbs stiffly onto the bed in our cubicle, trying to prop himself up on pillows, and I drop into the padded chair next to the bed.  I pull out my phone, but the battery is almost dead.  Doesn’t really matter, because the display flags “no service.” I lick my lips:  I’m thirsty, and we missed lunch.  We have no idea how long we will be here.

The nurse arrives, introduces herself and starts to set up for the infusion.  Mark is so tense; his hands are clenched into fists.  Before she loads the first drug pouch onto the metal tower, the nurse suits up in a protective full-body apron and plastic gloves.  Then she leaves, and we sit silently with the ominous rhythmic thud of the pump, as it sends deadly chemicals into Mark’s body.  After a while the machine starts to beep urgently, but no one comes.  We stare at each other.  Has something gone wrong?  I rush out to search for our nurse, any nurse, to help us.  Finally I find someone who explains that the beeping just means that the pouch is empty, and it’s time to load the next one.  

My head is pounding.  This is torture.  How are we going to get through this?  

Infusion Unit, Infusion Day #7, Week 9

We stroll back to our assigned infusion cubicle.  Mark settles on his bed and fiddles with the elevation controls so that he can sit comfortably upright.  I drag the padded chair away from the wall so I can fully recline, after logging my phone into the guest wifi network and plugging it into the wall with the extra charger I now carry.  

I pull out my IPad so we could look at photographs of front doors, since we have to make some decisions for our remodel.  We’re interrupted as the nurse arrives to confirm Mark’s identity.   (We understand now that we will do this about ten times each time we come. The staff is VERY careful.)  She brings us both warm blankets and we wrap ourselves in them. She accesses the port in Mark’s chest and starts a course of hydration, and then leaves to call for the chemotherapy pouches.  We go back to looking at art glass doors.  

The nurse returns and starts the infusion of the first drug.  We chat with her about the weather, her family, this and that.  She leaves and Mark switches on the television while I recline my chair and pull up the story I’m reading on my Kindle.  Mark dozes.  After a while the machine pumping the infusion starts beeping, so Mark presses the call button for the nurse.  She returns and preps the second drug, and I go to the Nourishment Center (clearly marked “for patients only”—hah!) and load up with cheese and crackers.  Mark and I munch on these while we watch the news, and since this is a afternoon/evening infusion appointment, I sip the very nice chardonnay I’ve brought in my water bottle.  (I really should switch to a glass bottle, because I can taste the plastic.) 

Then, we’re done for this week.  We wave goodbye to the row of nurses in front of computers at the nurses'  station and head for our car, a little worried that we’ll hit rush hour traffic on our way home. 

Time Warp in Cancer Land

It’s good news.  

Today, when Mark’s cancer doc came into the treatment room, she was all smiles.  Dr. C is dark-haired and graceful, and quite entrancing under any circumstances.  She always speaks precisely, her flutey voice lilting with a slight Romanian accent.  Mark’s CAT scan, she told us, shows that his tumors have been reduced by about 20 percent, including tumors that are very difficult to reach and treat.  The blood tests indicate that the tumor markers have decreased by half.  The chemotherapy is working. 

These changes, Dr. C said,  are indicative of a likelihood of survival of longer than one year.

We are elated.

We recently watched the movie Interstellar.  I puzzled over the plot elements, supposedly based on Einstein’s theory of time and space.  You'll remember the theory of relativity from physics classes:  Time isn’t an absolute.  Clocks run more slowly in deep gravitational wells.  In the movie, because some of the characters are traveling in space, in different gravitational fields, time passes more slowly for some of them than for others.  Heady stuff to wrap your brain around.

The physics of time fluctuation may be elusive, but I’ve experienced another kind of time warp firsthand.  If six months ago, before Mark’s diagnosis, I had been told that Mark might only live another year, I would have been devastated.  A year, such a tiny bit of time.  Why, we expected years and years, decades even, to live the rest of our lives.

But this fall, when Mark was first diagnosed, the first doctor tossed out terrible numbers:  six months to live, maybe just three months.  Hardly time to even catch our breath.

So with those awful predictions as a starting point, a year is a blessed long period.  Time to celebrate another birthday, another Thanksgiving, another Christmas.  Time for walks on the beach, laughter with friends, silly road trips.  Time to hold each other’s hands and to keep our son close, time to drink champagne and watch sunsets.  A luxury of time. An exuberance of time.  Days and weeks and months of it.

Of course, I want the whole miracle of remission.  I want years and years and years.  But a year is a darned good place to start.

Of crowds, lemon cures, prayers and sticker shock

If someone dropped you into one of the main waiting rooms at Seattle Cancer Care Alliance, you might guess that you were in an upscale airport lounge, waiting for a flight.  Each spacious open room is divided into sections by rows of comfortable padded chairs, some clustered together, others oriented to spectacular views of neighboring Lake Union.  Most of those waiting have come in pairs, and sit silently or talk quietly.  It can be difficult to figure out who is the patient and who is the caregiver in each pair, though often a scarfed head or a wheelchair can provide a pretty strong clue.  It’s here we began our voyage into cancer treatment.

  At our first appointment, the nurse practitioner presented us with a tabbed notebook with a staggering amount of information, with sections about medications, home care, cautions and warning signs, drugs, depression, diet tips, and contact information, along with fat pamphlets about pancreatic cancer.  Lots of homework.  Some of the information is quite technical.  It’s clear that negotiating Cancer Land in pairs is a good idea, because there is just too much for one person to absorb, especially during this period when we each feel like the proverbial “deer in the headlights.”  

But aside from the cram course about pancreatic cancer that’s in my notebook, I’ve learned other things, too, pretty quickly, such as--

It’s crowded here in Cancer Land

I think everyone knows someone who has or who has had cancer.  Before Mark was diagnosed, a dear friend of ours died from pancreatic cancer less than two years ago.  My closest friend battled breast cancer and is currently in long-term remission.  A cousin is struggling with prostate cancer.  But until you join the cancer crowd, you don’t realize that cancer is all around you.

When Mark received his diagnosis, our world was tipped on its end and we had to change many of our plans immediately.  As I made telephone calls, my strangled squeaky I’m-trying-not-to-cry voice explaining our story, it became apparent that cancer has affected many more lives than I realized.  The representative from the moving company told me that he had been given only about six months to live, but that he was on year eight of survival so far.  I’d talked to him on several occasions before, but of course he had no reason to share his story until I spilled mine.  The owner of the gardening service revealed that her husband has been living with cancer for several years.  So many people had a cancer story to tell.  Cancer, it seems, is everywhere. 

I read recently that although certain lifestyle choices can increase the likelihood of certain cancers (like the connection between smoking and lung cancer), the vast majority of cancers occur by chance.  It’s just very bad luck when that random mutation of a cell occurs in your body instead of in the body of the person next to you.  So I guess it shouldn’t be surprise that cancer lurks everywhere.

Lemons, really?

Everyone wants to help, and that’s lovely.  It’s not easy for others to find a way to help though, at least not at this part of our journey.  So, many people have passed along information about alternative treatments and roads to a cure.  I’m grateful, I really am, and some of the information is helpful.  A friend passed along information about a treatment at a hospital in Switzerland which has proved effective for pancreatic cancer, but which has not been approved for use in this country yet.  When I asked our cancer doc about this, she confirmed that this was a viable and promising treatment, but only for the “Steve Jobs” kind of pancreatic cancer (slow-growing tumors) but not for the “Patrick Swayze” fast-growing tumor type.  This was useful information, because I hadn’t even realized until that point that there are different types of pancreatic cancer.  (Unfortunately, Mark has the nastier one.)

But some of the suggestions, while well-intentioned, just make me scratch my head.  If freezing whole lemons and grating them heavily over all of Mark’s food would cure his cancer (I’m told by an acquaintance that it’s 10,000 times more effective than chemotherapy drugs), why wouldn’t we all be doing this?  Why is this a secret?  And if the constamt chanting of that five word phrase forwarded by the group centered in LA would really counteract “immutable karma” and effectively treat the cancer, why isn’t everyone at the cancer clinic chanting rather than dripping poison into their veins?  Can ingesting a combination of cinnamon and honey really cure that two-page list of ailments, including cancer?  

I just don’t quite know what to do with all these suggestions.  For the time being, I think we’ll just stick with the treatment road we’re on.  Chemotherapy really sucks, but I think it’s our best bet.

Prayers are coming our way…

Mark and I don’t have a strong religious orientation at this point in our lives.  I guess I’m one of those secular humanists.  I do believe in some continuation of being after death, though what that might be is certainly pretty vague to me.  Mark is a fallen-away Catholic.  We don’t attend church services and we don’t spend a lot of time asking for divine help and guidance.

And yet…

People are praying for us.  Mark’s sister is a nun who teaches in a boarding school, and as far as I can tell, she has all the other nuns and most (if not all) of the students praying for Mark’s recovery.  Another friend forwarded a stack of get-well letters from the Sunday school class she teaches, and she tells us that the class is praying for Mark.  Friends in Seattle,  Alaska and elsewhere tell us that they are offering prayers on our behalf.

And in spite of our lack of religious commitment, both of us love that people are praying for us.  I envision these prayers as sparkly pale yellow arrows of goodwill (yellow is my favorite color) that are zinging through the air on their way to us.  These missives warm our souls and make us feel like we are encased in the loving thoughts of others.   I’m convinced, just from the feeling in my heart, that these prayers are helping us.

Cancer Land is Astonishingly Expensive

Thank goodness we have really good health insurance.  

Although the bills from the clinic and the hospital are sent to the insurance company for payment, we receive copies of everything.

Imagine my shock as the first sheaf of bills arrive, and I discover the cost of Mark’s care.

Wait for it…

For the chemotherapy cocktail alone, aside from the doctor visits and the frequent hospital visits for various procedures, each infusion is billed at…

…over $10,000.

And Mark is on a schedule of a once-a-week infusion, three weeks out of every four.

The costs are jaw-dropping.  I am so grateful that we have coverage, but my heart goes out to anyone who needs this course of treatment and who doesn’t have coverage or the funds to pay for it.  

All I can say is…Wow.