Monthly Archives: August 2009

The Pest in the House: a metaphor for cancer

We are battling an invasion of field mice.  A neighbor told me that all the rain has driven them indoors.

Several weeks ago I opened the drawer to my desk and at first couldn’t even fathom what I was looking at.  Where there had once been tidy stacks of stationary, it now looked as if a tornado had gone through. Papers were strewn about and in the back corner was a soft little nest with five dead baby mice.  I then recalled finding a pillow, the cover of which was mysteriously speckled with little rips. Further searching revealed that the fringe had been chewed off two different sections of our oriental carpet.  I hated to do it, (kind of a general no kill policy–and mice are really cute) but traps were laid out. We caught just under a dozen mice.  For a short while, it seemed we had restored a little of what we consider the natural order in our home (more of us than them).

Until yesterday.  I was helping my son clean out his closet and I came upon another soft nest–this one was empty.  This particular closet was also a storage space for winter coats, so I began to go through them.  Before long, I located the source of the plush threads:  a vintage wool coat of mine had an area about a foot in diameter gnawed out of the silk lining.  More distressing yet, an antique mouton coat had a whole chewed right through it.  This mouse had a taste for fine materials.

Although not pleased with the destruction brought about by the nest building mice, I do not take it personally.  They are simply doing what is their instinctive imperative and no offense was meant. However, I am not obligated to allow them entry into my home and unlimited access to and destruction of my possessions. What is good for them is bad for me.

I cannot help but see the parallel to cancer in this scenario.  It is hypothesized that we may all have circulating cancer cells at any given time.  These are generally kept in check by our immune systems, and have no noticeable effect on our well being.  However, an external event, such as exposure to one or more carcinogens, can upset this balance and the cancer cells may proliferate to the point where our health is compromised.  This is when we generally become aware of our “host” status to an uninvited lodger and we do our best to evict “it”–(the cancer).

We have had occasional sightings of mice ever since we moved in here, but until this rainy summer (the outside event) we have always had the upper hand.  Our modest efforts at keeping down their numbers are suddenly ineffective, and the mice have begun to inflict some costly damage.  We can no longer coexist without harm being down to our home.

I am pretty certain we will always have some mice, but if we can find a way to deplete their numbers, we can minimize the damage that they do and carry on living.  We may occasionally feel unsettled, as we hear them rustle in the walls, but the situation will not be untenable.

This is such an apt metaphor for my cancer.  Cure is almost certainly not possible, but as long as we are able to keep the cancer at a level where it is not severely compromising my health, I am able to go about my life.  However, just as I will occasionally be kept awake by the sounds of mice in the rafters, so too will I listen to the beat of my heart and think about the cancer that is yet traveling through my veins.  Should I find evidence of proliferation, it will be time to clean house.

Crossing Borders

L1000498Last Thursday morning, my friend Sadie, daughter Jemesii, and I caught the ferry from Portland, Maine to Yarmouth, Nova Scotia.  We were headed to a little island that is the home of Fairy Fashions, a literal cottage industry that produces medieval-type wedding gowns.  Sadie was there to photograph the dresses and Jemesii was one of two models.  I came along for the ride, but ended up participating in the photo shoot as grip/wind break/best boy, etc…  They both worked really hard:  my part was easy.L1000553

Katherine,  the one woman wonder who runs this little wedding dress company, and her husband Marcus, graciously welcomed us into their home.  In addition to “working” (the quotation marks refer only to my role), we got to hang out with them and their three sons, as well as Katherine’s sister Mary, her nieces Zoe (who modeled) and Maeve, as well as family friend Jennie.L1000539

What a magical few days it turned out to be.  We were instantly smitten by both the location and our new friends. What might have initially seemed limiting proved to be opportune, as Sadie loved shooting in the fog that rarely lifted. Katherine was open to each of Sadie’s suggestions, and Sadie used the ocean and the rocky shoreline as backdrop.  In the final photo, she posed Jem and Zoe on the shore where the waves washed right over their feet and the hems of their dresses.  They looked like goddesses emerging from the sea:  it was spectacular. When Sadie has some photos ready, I will post some along with a link to Fairy Fashions.L1000503

I also got a chance to indulge in a new passion of mine.  It has always been my habit to pay more attention to what is on the ground than to my other surroundings (more looking down).  I suppose in part I am scouting for treasure, but I also find the micro environments at my feet more fascinating than the scenery.  I guess you could say it is easier (and more pleasurable) for me to focus on the little picture rather than the big picture. Anyway, I have started taking photos “looking down” and have found it to be great fun as well as a jump start to my creativity.  I’ve included some samples of my photographs here.L1000511

On the day we were to leave, Hurricane Bill was due to come ashore in Nova Scotia, so the ferry was cancelled. Although it would have been grand to be there for the storm, Sadie and Jemesii had professional commitments and we needed to hasten home.  We ended up catching a ferry to St. John’s instead, which meant we had a much longer drive home, but could still leave on Sunday.

The ferry ride was great.  The boat itself was rather dingy and smelled like fish, but unlike the ferry out of Portland, we had access to the deck.  The air was so balmy as we put out, a warm breath ahead of the tropical storm.  Before long we were on the edge of the hurricane and the boat was lashed with rain and wind.  To say it was exhilarating is an understatement.L1000686

Three hours later we were in our car and headed south to the border.  We were both exhausted and exhilarated from our little adventure, and already making plans to visit our new friends again.

I, for one, will head north across the border again soon.

Hello Sunshine

Sunshine has been in short supply in the northeast this summer.  When it has shone it’s sunny face, I have returned to a habit of youth; sunbathing.  I grew up in the era of baby oil and Coppertone (remember those ads?).  Just as the generation prior to mine can say they were ignorant of the dangers of smoking, those of us who grew up in the seventies never gave skin cancer or premature aging a thought.

In my mid-twenties, I cut my sun exposure to almost zip.  At the age of thirty, as a by-product of many sunny summers growing up in Colorado, I had a basal cell skin cancer removed from my lower back.  No more “laying out” under the mid-day sun for me.

That is, until this summer.  A combination of “what, me worry?” borne of my terminal cancer status (and you thought there were no perks) as well as a growing awareness of the importance of vitamin D in the fight against cancer.

And now a short commercial break:  I was working on this blog, when I happened to look out the window and noticed this “herd” of dragon flies cruising at a low altitude over our lawn.  Remember the bats and the schools of fish (see Greetings from Austin)?  Here was an opportunity to put myself in the midst of a large group of wild animals!  I booked it to the backyard, located a choice spot, and just stood there.  Momentarily distracted by my arrival, they soon resumed their feeding.  I had dragonflies buzzing all around me!  This is what sustains me, and makes me so unbelievably glad that I’m still at this party.  I tell you, life is so cool!

But I (happily, giddily even) digress.  Back to vitamin D and one of it’s primary sources, the sun.  Several studies in the past few years have correlated higher vitamin D levels with both a reduced risk of lung cancer as well as a greater rate of survival.  Recent research has also shown that lung cancer cells can destroy vitamin D.  So it would seem pretty obvious to me that all of us, and particularly those of us with cancer, should be paying attention to our vitamin D intake.

There are dietary sources of vitamin D:  fish, liver and egg yolks.  However, it is difficult (and possibly unpleasant) to get the suggested daily amount of vitamin D from food alone.  The new recommendations are for a minimum of 1000 IUs (International Units) per day.  A daily supplement is a possible solution, but it is important to remember that ingesting too much vitamin D can be dangerous–so never assume that if some is good, more is better.  The easiest way to achieve optimal levels is to spend 15-20 minutes per day out in the sun before applying sunscreen. According to David Servan-Schreiber, the author of Anti cancer, A New Way of Life,  “…twenty minutes of noon-day sun exposure to the entire body provides between 8,000 and 10,000 IUs”.

Again, moderation is key.  It is not possible to overdose on vitamin D from sunshine, but it is prudent to worry about skin cancer.  No need to prematurely age either:  I worked in a nursing home one summer and one of my jobs was to bathe the elderly residents.  I got to see up close and personal the difference between skin that has seen too much sun and skin which has always been protected, and I can assure you that it is possible to skip the wrinkles almost entirely.

I was curious as to whether or not tanning beds could be a source of vitamin D. The answer is yes, but not a safe source.   It has recently been shown that repeated use of tanning beds before the age of 30 corresponds to a 75% increase in risk of skin cancer.  Time for tanning beds to go the way of leaf blowers (what…we still have leaf blowers?).

I believe a brief daily sun bath is not only the most natural way to take my vitamin D, but also the most pleasant.  And, just like walking, it’s free.  What a perfect world.

Tattoos and talismans

L1000358  Linnea, tree, tattooI believe in luck.  Good luck and bad luck, and I have experienced both.  A bumper sticker popular several years ago was eloquent in it’s simplicity:  “Shit happens”. By definition, luck of either variety is largely out of our control. However, this doesn’t stop me from trying to attract luck of the positive kind.  To this end, I have several good luck charms, or talismans, in my possession.

One of these never leaves me, and is, in fact, tattooed between my shoulders.  It is a white circle, symbolic of protection.  When my big kids were small, I would draw an imaginary white circle around them whenever I was anxious or worried. It became my habit to extend this imaginary white circle around anyone whom I wanted to keep from harm.

Three summers ago, my son August and I went to the tattoo parlor together. This was not August’s first (or last) tattoo, but it was to be mine.  I felt we could both benefit from some additional protection at that time.  It was also a mother/son bonding experience.  The imagery was mine, but the medium (tattooing) was a page from his life.

My sister Bink helped us determine placement and size (by pressing a shot glass into my skin).  The woman at the front desk tried to talk me out of an all white tattoo, but that was what I wanted.  I had to sign a disclaimer saying that my tattoo would not be touched up if it faded, and I got my white circle.

In addition to August, my sister Bink now has a variation on the white circle, as do my niece Mesa, daughter Jemesii, and friend Sadie.   I don’t give it much thought, unless it provokes a curious question (which it often does).   I will sometimes trace my fingers along the circle, reminded of it’s purpose; comforted that it has my back.

Survivor versus Surviving

The term “cancer survivor” has become part of our everyday lexicon.  Even within the cancer community, there is confusion as to what exactly it means. According to the National Coalition of Cancer Survivors, survival is… “from the point of diagnosis forward”.

When considering overall survival statistics for a particular cancer, there is a more specific reference point:  it is the percentage of people who will still be living after five years (excluding those who die from other causes).   Before I go any further, it is important to clarify that survival statistics should be viewed as estimates, and not actual predictors of an individual’s prognosis. Statistics describe a trend, or a likelihood of an event (in this case, death from cancer) in a large group of people.  They are based on actuarial tables that are by necessity at least five years old, and thus may not reflect recent treatment advances.

Statistics are in essence a fraction.  When you read that lung cancer has an overall survival statistic of 15%, it means that the number of people diagnosed with lung cancer over a period of five years (the denominator) has been divided by the number of deaths over that same five year period (the numerator).

Overall survival statistics are all inclusive as far as type (NSCLC and SCLC) and stage, and do not address other considerations such as disease or progression-free status.

Survival statistics that are broken down by cancer type and stage, are more useful for evaluating treatment options and for predicting prognosis. But, it is possible to focus too much on these statistics.  “What stage?” is often the first thing we ask after we are given a cancer diagnosis.  In essence, we are asking whether or not we have reason to hope.

After my lobectomy, I was staged a IB.  I felt incredibly fortunate, but that sense of good fortune was tempered by the awareness that being staged a IB was very different from being staged a IA.  The difference between an A and a B was a significant survival advantage.  Statistically speaking, cure was possible, but certainly not probable.

I became all too aware of the emotional impact of staging when I went from stage IB to IV.  It was devastating.  My cancer was essentially the same cancer, but now, statistically speaking, the situation seemed hopeless.

The Merriam Webster definition of survivor is:  1.  to remain alive or in existence, to live on.  2.  to continue to function or prosper.

I certainly wasn’t prospering, and it was questionable how much longer I would function or even continue to exist.  And yet, I was indeed still hopeful and there was no question that I was still alive.  Did this make me a survivor?

Survivor seems to me to imply that the trauma has passed.  You’ve faced a great challenge, yet you have persevered.  There was no question that I was facing a great challenge, but I knew that it was highly unlikely that ultimately I would either persevere or prosper.

I don’t refer to myself as a lung cancer survivor.  I prefer to say that I am surviving lung cancer.  To me, this clears up misconceptions about both my status (terminal, rather than in remission or cured) as well as to the degree that I am still involved in this battle.  Each day is a fight for survival, every new breath is a victory.

Don’t look down

L1000367  Linnea and Sadie hugging a treeThis morning I was doing some research on the internet for an entry about being a lung cancer survivor. I was searching for long-term survival statistics. Initially, I was looking at overall survival and then I began to break it down by stages. The survival statistics associated with a lung cancer diagnosis are definitely not reassuring, and I am well acquainted with them.  I am someone who is comfortable with a lot of information. I am also pragmatic and reality-based when it comes to tough issues. This approach does not embrace denial but does require a certain emotional detachment.

As I narrowed my search to stage IV survival statistics, I began to get a feeling almost like vertigo.

You see, in many ways, life with terminal cancer is like walking on a tight rope–and in order to maintain balance, it is important to focus only on the goal.  I had just looked down, and suddenly I was paralyzed by fear.

I turned off the computer.  I took  a nap.  I went on a walk.  I cleaned the attic.  By returning to these tasks of daily living, I was able to feel as if my feet were on solid ground again.

The photo is of me and my friend Sadie.  We were hiking in the woods behind our house this past weekend.  I have my arms wrapped around an old beech and Sadie’s hugging me and the tree.  With big trees such as this one, I swear I can feel the life in them; almost a faint throb or hum.  I like to think that Sadie is listening for that pulse in me as well, and that we are both hanging on for dear life.

The “Now you see it, now you don’t” scan

Before I move on, I thought we’d take one last, long view of the before and after CT scans of my lungs. The scan on top was taken on September 16th of 2008 two weeks prior to starting the PF-02341066 trial. The lower scan was taken seven weeks after my lead-in dose (taken one week before starting regular doses) on November 19th.

beforeandafterlinneacancerslice1beforeandafterlinneacancerslice2 I had been receiving scans every three months for three years at the time of the September 2008 scan.  They had gone from questionable to progressively worse. “Interval increase in size and number of multiple bilateral pulmonary nodules is consistent with progression of metastatic disease”, read a report from August of 2007.

In stark contrast, the radiology report from November 19th of 2008 read: “Marked interval improvement of bilateral pulmonary lesions, with near complete resolution.  Small remaining lesions, left lower lung septal thickening, and left pleural effusion as above.”

I should point out that radiologist’s reports are, by necessity, very conservative in their wording.  Keeping this in mind, “near complete resolution” practically gushed with enthusiasm.

The scan from September illustrates clearly how far the cancer had advanced. The remaining upper lobe of my left lung was literally clouded with malignant nodules.  My right lung also shows a diffuse haziness indicating the spread of disease.  I had once again developed a hacking cough and increasing shortness of breath, and it was no longer possible to engage in many of the activities I had previously.  I was losing ground in my battle with cancer and it seemed inevitable that I would have to concede defeat.

But that was before PF-02341066.  Now I could literally and figuratively breathe again.  I was yet at war, but at long last I had a victory.