The day(s) after chemo

Within 24 hours after a chemotherapy session, we would travel back to the hospital, where I would receive an injection of Neulasta. Neulasta prompts the body to boost production of white blood cells, as low white cell count (neutropenia) can result in secondary infections.  In addition to feeling wiped out, I now began to experience intense bone pain that would last for several days. This is a common side effect of Neulasta, and my oncologist had preemptively written a prescription for Percocet.

I was also experiencing the most intense heartburn of my life, ringing in my ears, and a bowel that would lurch between diarrhea and severe constipation. Exhausted, I spent lots of time sleeping in my ‘lazy girl’ recliner, but my sense of smell became disoriented (along with taste) and I couldn’t bear the smell of our newish oriental carpet.  David ended up having to haul it outside where he gave it an intense shampooing.  Luckily, it being June, I had the option of hanging out in the hammock on our screened-in porch, and it soon became my second home.

I was not without an attendant angel.  Our friend Miranda organized a schedule of prepared and delivered meals during the many weeks of chemotherapy.  She enlisted neighbors, friends and acquaintances, and an amazing bounty of food would arrive each evening.  Certain dishes I would have to avoid, both due to my repressed immune system and my skewed palate, but it was a huge burden off of David’s shoulders and great fun for my kids as well.

By the end of the second week, my hair began to come out.  I was taking a shower, and as I shampooed my head, my hands filled with clumps of hair.  I hadn’t been very concerned about hair loss, but when it happened, I became rather emotional. After I toweled off, I asked David to shave my head.  Soon the stubble would fall out as well, as well as any remaining hair on my body.  There was now no doubt that I was a cancer patient.

Picking up that old thread: chemical warfare

I have been putting off writing about chemotherapy. The truth is, there is a lot from that period of time that I don’t remember, and most of what I do recall is far from pleasant.  Although perhaps not quite as terrible as I had imagined, it was still a miserable experience.

The lobectomy had actually been a more physically demanding procedure, but there was a significant difference between the two treatments.  Once surgery had reached its conclusion, healing began, and the process was linear.  As chemotherapy is administered in cycles, just as you’ve begun to recover from one infusion, it is time to begin another.  And the side effects typically worsen with each consecutive cycle.  You are knocked down, you stand up, and then are knocked down even harder.

My chemotherapy consisted of a cocktail of two different agents:  Taxotere and Cisplatin (a platinum drug).   I received four cycles of each, at three week intervals.  The day before a cycle, I would take two Decadron, to combat nausea as well as inflammation;  it is also an appetite stimulant.  The morning of chemo, I would take two more Decadron and then an hour before, one dose of Emend, another anti-nausea drug.

The wing at the hospital where chemotherapy is administered is referred to as infusion.  The room itself is large and sunny and lined on both sides with recliners.  I would sit in one of these recliners as first taxotere and then cisplatin were dripped (via the port) into my veins. This would take several hours.  During the taxotere phase, my nurse Lisa would immerse my hands in a bowl of ice.  One of the possible side-effects of taxotere is peripheral neuropathy, and she believed that by chilling my fingers and thereby limiting blood flow, we could limit the degree to which that might happen.  I did develop noticeable neuropathy (numbness) in my feet, but very little in my hands, so perhaps it was effective.

One of the potential side effects I had been most anxious about, nausea, was actually fairly well managed by the plethora of anti-nausea drugs: in addition to the decadron and the emend, I was prescribed ativan, compazine, and zofran to take as needed.

Chemotherapy can also take a real toll on your blood cell counts, which is referred to as bone marrow suppression.  On the day of infusion I was given a shot of Procrit, to combat red blood cell depletion.  Procrit is a man-made form of the protein human erythropoietin, and is no longer used prophylactically to ameliorate anemia, as subsequent studies have revealed a host of dangerous side-effects.  It now carries a boxed warning, which states that “increased mortality, serious cardiovascular events, thromboembolic events, stroke, and increased risk of tumor progression or recurrence” can all occur.  Of course I don’t like the fact that I took Procrit, but at that time (June of 2005) these studies had not yet come to light.

Kidney damage is a possible side effect of Cisplatin, and prior to the second phase of infusion, I was given a large amount of fluid intravenously.  I was also encouraged to drink two to three quarts of water daily, particularly the first couple of days after therapy.

During infusion, the strongest sensation was a flushing of my skin, as well as a metallic taste, and as the day wore on, a feeling of being very out of it.  By the time David helped me to our car for the drive home, I would feel as if I’d come partially undone; my ability to think, unravelled.

Goodbye January

I am digging myself out of what would seem to be an annual January malaise. November and December have a tendency to build to some sort of happy frenzy, which, though exhausting, can make January seem rather dull and flat in comparison.  It hasn’t helped that the temperatures have been in the single digits for the past week, which feels much colder still when you account for the wind chill factor.

January did conclude with a celebration, however, as David turned fifty.  We had a lovely party at Mary and Raleigh’s house, for which Jem and Peter made whimsical pipe-cleaner crowns.  I received a flip video recorder for Christmas, and as dinner began, we passed it around the table.  I will have fun editing the resulting footage.  In the meantime, here are some little stills of the festivities:

In addition, a larger shot of one of the wonderful pipe-cleaner crowns:

Today I was able to paint again.  It had not been possible for several days due to the extreme cold.  My ’studio’ is actually a glassed in porch, euphemistically referred to as a “three season room”.  We added electric baseboard heating as well as a ventilation fan, but when the temperatures drop too low and the wind is blasting, it is impossible to get warm in there.  In fact, it does double duty as an overflow icebox.  Today I removed the left-overs and picked up my brushes again.

Tomorrow, I will pick up a thread I dropped long ago.  I will describe my experience with traditional chemotherapy.

Advanced cancer as a cure for procrastination

A small personal victory to announce:  I have started painting again.  Three days out of the last six, so it can be considered a trend rather than a fluke.  When pressed as to what I do, I have always responded that I was an artist.  There have been times where it didn’t feel very truthful, and there have been other times where I cheekily said that I would be an artist when I grew up.  I’ve felt all grown up for a while now, but my brushes have mostly sat idle.

Why?  Well, it’s complicated.  There are several reasonable excuses, but I am of the mind that we usually find a way to do the things we really consider important.

I’ve spent a fair amount of time since my diagnosis reordering my priorities and getting my personal ducks in order.  When I first learned that I had lung cancer, I was overwhelmed by the thought of all the things I had intended to do in my lifetime that might now go undone.  Being a parent had really taken precedence, and though I had no regrets, I suddenly felt a sense of urgency regarding my creative pursuits.  The first year post diagnosis was pretty much a wash as I recovered from surgery and chemo, but within a short time I threw myself back into painting with a vengeance.  This cycle was soon disrupted first by the time consuming realities of a move (as well as the loss of my studio space) and then again by my deteriorating health.

I think that expressing myself through words, as I have done with this blog, has helped lead me back to painting.  Writing is easier for me, as the means of communication is simply a hard copy of what is already happening in my brain. Painting requires a bit of translation as well as invention, as each artist’s vision is very much a personal language.  It is a rigorous process and not easy to achieve a product that resembles the pictures that are so alive within your imagination.

Procrastination is, in contrast, ridiculously easy from conception onward, but ultimately makes everything so much harder.

I really want to paint, and to express myself that way again as well, but it has been difficult for me to get started.  Last week I happened upon some beautiful paintings by an artist named Julie Unruh.  I found her contact info on her web site, and sent her a fan email as well as the link to my blog.  Much to my surprise, she responded and even graciously offered encouragement.  Magically, some little painterly spark was ignited, and I jumped back into it.

It is a good thing, and what I want, but it is still complicated.  Yesterday was my monthly appointment at the hospital, and I had some questions for Dr. Shaw about causal factors for lung cancer.   I am still of the mind that my long-term exposure to secondhand smoke played a large role in the development of my own lung cancer.  However, many other never smokers with lung cancer have no documented exposure to that particular carcinogen, clearly suggesting that other factors are at play as well.

Painting is one of those avocations that potentially involves exposure to known carcinogens.  I take precautions, including avoidance of solvents as well as a good ventilation system.  In the end, it is a question of risks versus benefits and perhaps love over reason.  I have decided to follow my heart.

A chilly and magical morning to share

We made a quick trip to the south shore of Massachusetts this weekend. David’s Mom is going to be moving into a smaller home soon, and we’ve driven down there when possible to help with sorting, packing and transport.

This morning we rolled out of bed just as the sun was rising. Temperatures the night before had dropped so low that the harbor was completely iced over.  My pajamas provided an extra layer of warmth beneath my clothes, as I hurried outside to take some photos.  It was so surreally beautiful.

Bhutan and Gross National Happiness

I have been toiling for some days now on a couple of posts regarding my chemotherapy experience.  To be honest, it is not easy to revisit and I have been dragging my emotional legs. Yesterday evening I took a break to attend a general parent meeting with David at the Sant Bani School.  In addition to garden variety updates, Kent Bicknell (headmaster/principal) was giving a presentation on his recent trip to Bhutan where he took part in the “Educating for Gross National Happiness Workshop.”

Bhutan is a small Buddhist nation which recently became a democracy.  In direct contrast to an accepted approach for determining the well-being of a nation, the Gross National Product index, Bhutan is attempting to measure Gross National Happiness.  Click here to read a New York Times article  about Bhutan’s assertion that happiness and material prosperity don’t necessarily go hand in hand.

It’s an interesting concept.  Although I am skeptical that a quality such as happiness can be assessed using quantitative means, I believe an examination of what constitutes happiness is both important and long overdue.  The Declaration of Independence in my own country referred to “the pursuit of happiness” as an inalienable right.  Somewhere along the line many of us have forgotten how elemental simple happiness really can be, and that it is not a commodity that can be purchased by those with means and denied to those without.

Happiness is a state of mind and although it can certainly be influenced by outside events, it is never determined by them.  Each of us can choose to be happy, no matter what.  Really, I know this to be true.  Sometimes I fall off the happiness wagon, but I keep climbing back on.

And today I am extra happy in the knowledge that there is a place on earth where Happiness has a capital H and is a national priority.  And it’s not the only thing that Bhutan is getting right: cigarettes are illegal there.

Pathologically optimistic and unrelentingly positive

I was prepared to write yesterday, but faced with Haiti’s natural disaster, I found I couldn’t.  I am back at it today, with a somewhat curious title.  It is, in essence, my battle call; after the initial shock of bad news, I find it necessary to rally with a message of hope.

Last week I received phone calls from both my very caring head trial nurse and my oncologist.  They were checking in and following up with reassurance following my slightly concerning report from the most recent CT scan.  I assured them both that after a few days of anxiety, I was back on track with a can do attitude.  By definition I have a terminal illness, but it is counterbalanced by determined optimism.

It is virtually impossible for me to remain depressed for long.  I would imagine this is so for a combination of reasons.  To begin with, I am so in love with this world and view each new day as an adventure.  I much prefer happiness to sadness, and make my choices accordingly. Depression requires focus on one’s troubles, and I am quickly bored and easily distracted.  I have a home, adequate food, love and friendship.  And let’s not forget the prozac…

When it comes to attitude, I actually feel a bit of a kinship with our golden retriever Buddy.  Retrievers are prone to hip dysplasia, but Buddy came from a lineage with no appearance of the disorder.  That is, until Buddy.  He was only eight months old when an x-ray confirmed not just severe hip dysplasia on both sides, but two bad elbows as well.  Poor Buddy.  The breeder offered to ‘trade’ him for another dog, but that was unthinkable.  We considered surgery, but ultimately decided there was just too much to fix, as well as the fact that each surgery would involve long periods of confinement and discomfort.

Buddy is not yet three years old, but there are days when his movements are more like those of an old dog.  Undoubtedly, it will get much worse.  None of this has had any effect on Buddy’s joie de vivre.  He is happy, happy, happy and always up for anything.   Food!  Squirrel!  Walk!  Play!  Pet!   More wag, less bark, this one.

I’ve known some worried dogs, but not many.  And usually, even in the most miserable of situations, you can turn their mood around.  I believe they respond to life much as I do:  each day is an adventure, happy is good, all distractions are eagerly welcomed, as is food, shelter and love.  No prozac necessary.

Haiti

Today, my heart goes out to Haiti.

Embracing winter

It is undeniably, certifiably, (to quote the munchkins in my all time favorite movie) deep winter here.   The temperature is well below freezing and a light snow is falling.  Just a moment ago the coyotes began to howl:  ”A party, we’re having a party”, they seem to say.  Now a few dogs on the hill are barking their response to these distant cousins: “Yes, thank you, we’d join you if we could!”

There is really only one way to weather the winter well, and that is to embrace it. Peter, that lucky boy, will now spend his Friday afternoons skiing with his classmates, today being their first day on the slopes.  It is an inspired addition to the academics which is, of course, eagerly embraced by the students.  I chose today for my first walk of any distance on my repaired ankle; a mile each way.  I stopped midway for a spot of tea with Mary and Raleigh, and by the time I turned back home, the sun had set.  It was pure magic walking up the hill in the snow lit twilight, and I was so happy to be back to my old walking ways.

Early yesterday, when I drove Peter to his bus stop (alas, it is not within walking distance), the sun was just coming up.  Halfway down the hill, we were both startled by an animal perhaps a hundred yards ahead that shot across the road in a blur of dark fur.  When we came to the spot where it had crossed, there was no sign of it.  I decided that on the return trip, I would stop and look for tracks.

Across the lake, the sky was a gorgeous rosy hue, which in turn stained the snow and the ice pink.  It was all just so delicious, I wanted to take a bite out of the morning.

On the way back home, I stopped at the place where the mystery animal had crossed to look for clues to its identity.  This is one of my favorite aspects of winter; the ability to actually see a record of an animal’s passage. There were days old deer prints and those of a squirrel, but the freshest tracks led right to a large tree.  On closer examination I could see the impression of sharp claws.  It was likely a fisher cat that we had seen.

I never tire of the variety of wildlife whose habitat we are sharing.  The day before, our dog Buddy and I had flushed out a ruffled grouse.  Buddy was beside himself with all of the little tracks in the snow, and I watched in fascination as he sniffed along the trail of a mouse.  It was as if he were reading braille with his nose, and I envied him the information that he was gathering.  I also stopped to examine an enormous hole that had been carved perhaps twenty feet up the trunk of a large white pine.  For several days a pileated woodpecker had been hammering with his beak at the punky wood in search of carpenter ants.

We are also visited by a handful of deer each evening.  They dig through the snow with their noses and forelegs in search of the acorns beneath a large oak tree.  Last week I followed their tracks through the woods and saw where they had bedded down the night before, the imprint of each of their bodies melted in the snow.

Even now, in what is often referred to as the dead of winter, it is all so alive.  I find myself marveling, yet again, at what a privilege it is to be here.

Not long after my diagnosis I suddenly understood the answer to an age old riddle.  What, exactly, is the meaning of life?  Suddenly it was so obvious.  It was, simply…life.  From that moment on, I determined that I would never again take this wondrous thing, this precious yet fleeting gift, for granted.  Here’s to life.

Clearing the air

When I tell people that I have lung cancer, I make no mention of whether or not I smoked.  Most people will ask me anyway.  I view this as an opportunity to educate:  nonsmokers can get lung cancer too.  But what if I had smoked?  Would there be an awkward silence after my affirmative response?  Would the air hum with an unspoken “you got what you deserved?”

This is but one of the reasons why you hear lung cancer referred to as the cancer with a stigma.

When regarding a person who is morbidly obese, it is likely not uncommon to assume that they have failed to regulate self control when it comes to food consumption (whether or not that is actually the case).  But how often does someone actually go up to them and ask, “did you eat too much?”  Such restraint is not observed when talking to those of us with lung cancer.  I feel compassion for everyone who shares my diagnosis, and I certainly don’t believe anyone deserves cancer.

My relationship with cigarettes is complicated.  My mother smoked. Probably while I was in utero, but certainly throughout my childhood.   I never liked it, and when I got to an age where I felt I could take a stand, I did my best to get her to quit.  She finally kicked the habit, but not until I was in my thirties.  Mom never got lung cancer, but I did.

It’s hard.  Hard not to feel sad and a little angry.  A new study indicates that children who grow up in a household with a smoker are twice as likely to get lung cancer; whether or not they ever smoke.  Click here to read the article.

Unfortunately my exposure to second hand smoke didn’t stop there.  From the age of sixteen until I was thirty, I waited tables in a variety of restaurants.  This was in the nineteen seventies and eighties, and anti-smoking laws were in the distant future. After a seven or eight hour long shift, I would come home and immediately shower, in an attempt to wash away the reek of cigarettes.

Yesterday, the Sunday New York Times had an article regarding the poorly enforced ban on smoking indoors.  Evidently in certain New York City clubs, patrons are ignoring the regulations against smoking and the management of these establishments is choosing to look the other way.

The online version of the article allows readers to express their views, and a large number of people joined in, myself included.  Click here to view the article;  and then check out the comments if you are interested.  Mine was the 200th comment and you can find it under HIGHLIGHTS as well.    The viewpoints are, as expected, quite polarized.  A lot of anger, and words such as entitled and selfish thrown around by members of both camps.   The Bill of Rights is rather loosely invoked and references to a “nanny” state are made.  Not a lot of sympathy is shown by either side for the other and some opinions are just downright cruel: “As for smoking generating higher medical costs, I am dubious.  Smokers die early rather than hanging around until they’re ninety…”

Tell you what.  I’m not one to judge as long as personal behavior is harmful to no one else.  But that’s the rub with smoking.  Unless you are really, truly, isolated in locale, your smoke is going to enter someone else’s airspace.

More than twenty years ago I made a sketch for a t-shirt that I wanted to get printed.  I hesitated, afraid that maybe it was offensive.  I no longer feel that way, and in fact one of my New Year’s resolutions is to put it into production and raise some funds for lung cancer research.  The message on the shirt will be this:

PLEASE GET YOUR BUTT OUT OF MY FACE