Monthly Archives: September 2009

I didn’t come down the mountain the way I went up

L1010072On Friday, I went hiking to the summit of Mt. Cardigan with my son Peter’s school. The trail was very rocky and a steeper ascent than I had anticipated, so I took a lot of breathers. When I got to the top, the view was AMAZING:  a total 360. Weathered granite covered almost every surface, with only an occasional bit of greenery. The wind blew like crazy, but we were able to find a place that was somewhat sheltered from the wind and the sun was lovely.  That crazy wind was cold though, and we were ready to start our descent before too long.

Common wisdom holds that going down is easier than going up.  True, (generally), but often more treacherous as well.  There were so many of us heading down, that we had a bit of a bottle neck.  Not far from the summit, a young fellow sought to get ahead, and accidently checked me.  I lost my footing and went down hard.  The sudden pain alerted me to the fact that I had badly twisted my ankle, but when I looked at it, I understood immediately that it was broken.  Foot pointing the wrong way, bone where bone shouldn’t be, that sort of thing.

Let’s see–there were so many bad puns that would have been suitable for the title of today’s blog:  A bad break (thanks Katie); And now for a quick ankle break; Not sure where I stood; …ah, the possibilities.  Anyway, there I was, more than a (steep) mile from the trailhead, and totally unable to move.

Peter was so worried about me, but as I was able to stay very calm, he also maintained composure.  Several staff members immediately attached themselves to us, and, luckily for me, one of them was an EMT.  Her name is Linda and she is my new BFF. A 911 call was placed and arrangements made for the search and rescue squad to come and get me.  In the meantime, every effort was made to keep me warm and as comfortable as possible.  I placed a quick call on my cell phone to my daughter, Jemesii.  I basically said, “Hi honey,  This is Mom.  I’m sitting on the side of a mountain with a broken ankle.  Could you get to our place in NH?”  That was all Jem needed to hear.  The girl got on a bus and painstakingly made her way to our town.  Let me tell you, Jemesii is exactly the right person to call in a time of crisis, and this isn’t the first time I’ve had to do so.  I also left a message with my husband David, who, unfortunately, was away on business in Colorado.

As we waited for the crew to assemble and make their way up the trail to us, I had plenty of time to think.  I have always wondered if tears have more to do with fear and stress than pain.  I was in a lot of pain, but not really too worried or frightened.  As I said to Peter, “we can handle this, we’ve been through worse”. Also, my new BFF and the other assembled adults had a really good handle on the situation.  So, aside from continuing to stay calm, my primary task was to handle my pain.  And I did okay.  I never felt like I wanted to cry, and when the pain would get too intense, I would repeat the mantra in my head that I have used to calm myself ever since I learned it in a transcendental meditation class thirty years ago.

And then my transportation arrived, the Canaan volunteer fire department.  A quick splint was placed on my leg and I was carefully lifted into a litter.  Chemical hand warmers were placed on my chest (they were great, as I had really begun to shake), I was wrapped and strapped, and then this incredible process of carrying me down the trail began.  In addition to the fire department, some Sant Bani staff members and a NH Fish and Game employee were my porters.  The “ride” was amazingly smooth and well coordinated, with Linda periodically reminding people to not jostle my ankle (I really know how to pick my friends).  I joked at one point that this was a great way to see the leaves.  In truth, for one of the first times in my life, I was only able to look up.  Staring at the sun dappled canopy of the forest was a pretty amazing vantage point.  Linda even popped her sunglasses on my face to shield my eyes from falling debris.  I felt incredibly safe and well taken care of and have a whole new bunch of heroes now.

When we got to the bottom, an ambulance was waiting.  Linda would drive my car home (which was a good hour and a half distant) and drop Peter off there:  his sister would join him shortly.  I was going to the hospital alone, and although it would have been nice to have someone there, it wasn’t necessary.

I’ve always wondered what the inside of an ambulance looked like.  I would have plenty of time to study the interior of this one, as we had a long (and bumpy, ouch) ride ahead of us. I can’t take any medication without prior approval because of possible contraindications with the trial drug. Calls were placed to Dr. Shaw for approval (she always calls back, and she did).   I was given saline, oxygen and zofran, but a cross check was needed for the morphine.  It turned out to be a busy Friday, and the paramedic had to jump off for another call, so it was going to be a while yet before the ok for morphine was communicated to the staff of the Dartmouth Hitchcock Hospital.

An x-ray confirmed that my ankle was indeed broken.  Broken in at least three places, and would require surgery.  I finally got some morphine as well as some fetanyl (it had been almost six hours since the accident). My sock and jeans were cut away and a splint was placed on my leg that went to mid thigh.  Thanks to the powerful drugs, I have no recollection of this procedure, which couldn’t have been pretty.

A week would have to pass before surgery was possible, in order for some of the swelling to abate.  I was discharged and Jemesii, who had a two hour drive from our home to the hospital, arrived a little after 10pm with Peter.  She had been on the road for almost 14 hours by the time we arrived back home.

One quick slip of the foot, and, well, now you know what happened.  I’m just so grateful to all of those who rearranged their Fridays to get me down that mountain.

Thank you.
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Quick commercial break: a little bit of beauty beneath our feet

I know I said that I would resume my original story in the next post (diagosis et al), but it is WAY too beautiful to talk about lung cancer today.  I just got back from a quick hike through the woods, and I would like to share some photos.   Fall is just revving up here, and I have been photographing the leaf litter, coincidently referred to as duff.  I’ve already mentioned  my looking down game.  There is only one rule:  no rearranging on my part.  These are nature’s little vignettes.

Whereas many, maybe most people, concentrate on the scenery, I am attracted to the details.  This helps prevent my tripping on things that lay at my feet, but I do whack my head a lot.  I’ve often thought that I would eventually perish by being washed out to sea while in the act of beach-combing (that actually sounds rather lovely).  I am also drawn to objects that are discarded.  Qualifying discard includes trash (particularly weathered objects like beach glass) as well as flea market and thrift store finds.  Nature has it’s own flotsam and jetsam:  feathers, shells, dead insects, bones, fossils.  You name it, I’ve found it.  My looking down photos are simply another form of treasure hunting for me.   They are also a reminder that there is beauty everywhere, often beneath our feet.  Please enjoy this beautiful fall day with me.L1010053L1010049L1010045
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Life and breath at 10 weeks: modus operundi

L1000948Just thought I’d pause here  to reflect on two and a half months worth of blogging.  Firstly, I hope those of you who are following my posts are not too troubled by the non-chronological presentation of present and past.  It is my intent to start with diagnosis and connect the dots to the present, but also to write about what’s going on in my life now.  The present tense is super important in my tale, per the subtitle:  LIVING with lung cancer.  Were this a book, rather than a blog, there would be organized chapters.  However, consider this the uncorrected proof.

L1000951As I recount the past four and a half years, I find that some of the retelling is quite painful.  I don’t deny, but nor do I dwell, and writing about these experiences forces me to rehash the past in great detail. Can’t say I am always enjoying it.  And yet, it has always been my intention to get it all down–for the sake of my children (a legacy if you will).  At some point I decided that I would tell my story to a broader audience, and a blog seemed the perfect forum in which to share not only with my children, but with others as well.

L1000971Even given uneasy memories, I have discovered that the whole process of writing is something I’ve really taken to.  I enjoy the ritual, and the sense of accomplishment that I am following through with an intention.  I like the fact that it is somewhat interactive:  see the numerous comments by Guillermo, in which he recounts his own story.  His entries are like a little blog within a blog.  I have enjoyed the participation of my family.  My husband, David, proofreads most posts (his knowledge of punctuation is superior to mine) and my daughter, Jemesii, has helped me out immeasurably with the technical end. I have even made some new friends:  people from the Lung Cancer Alliance support group who have contacted me after checking out the blog.  It’s a great feeling, the ability to connect with people.

L1000969In a way it echoes an earlier avocation of mine; keeping journals.  It was a habit I picked up in art school and which I continued until about five years ago–really, just about the time of my diagnosis. My journals were basically compendiums of sketches and jotting downs, collages and paste ins of anything that inspired me.  They were a lot of fun, and though I never considered them a serious art form, they offered a spontaneity and lack of rigor that is sometimes difficult for me to find when painting.  The little thumbnails are snippets from one of those journals.

L1000942When I realized that blogging could be a mixed media event: writing, pictures and even movies, I got pretty excited.  I could tell my story, gradually get around to the sad and gory details (not too gory, as I’m not a fan of TMI), but also have some fun and post some pretty pictures.  Yea!  So, that’s what has been going on.  I should reiterate though, that when I am writing about the science of lung cancer, I am dead serious in my approach.  It is very important to me to not put any information out there that is incorrect.  Some days I just get down to work and frankly, some days I just get down.  Either way, it’s been cathartic, and each post about the past is like a closed chapter.

In my next post I will talk more about the weeks following my diagnosis almost four and one half years ago.  Bear with me.  It is a story that I need to take frequent breaks from; to concentrate on the present moment, and the glorious fact that I am alive.

What next: the week post diagnosis (looking back to April of 2005)

The malignant mass in the lower lobe of my left lung

The malignant mass in the lower lobe of my left lung

I cannot imagine what it would be like to face a diagnosis of cancer without a loved one beside you.  My terror was so great; I remember the room went white and all I could hear was my pounding heart.  I had never felt either so alone or so afraid.  My husband David held me, but he also had to hold himself together.  I couldn’t see or hear, and I certainly couldn’t think.  He would have to do that for both of us.

One of the first people my husband called with the news was my good friend Melinda.  Her husband, Kihan, was a surgeon and he had done his residency in Boston, and we wanted his advice.  I had been assigned a thoracic surgeon, but neither David or I liked him. Kihan strongly recommended Dr. Douglas Mathisen at Massachusetts General Hospital.  We were able to arrange a consultation with Doug for the following Thursday.  In the meantime, a bone scan, MRI of my brain, and a PET scan were all scheduled.

David placed all the phone calls to our families and friends.  I didn’t want to talk to anyone, nor did I want to see anyone.  I was frightened, I was sad and I was angry.  Being diagnosed at the age of 45 with lung cancer, having never smoked, felt every bit as random (and as unlucky) as being struck by lightning.  I found myself wishing ridiculous things, such as, “why couldn’t I have gotten breast cancer instead?”:  not only did breast cancer have far better overall five year survival statistics (100% at stage I, and 20% at even stage IV), but it had sisterhood, massive fundraising and pink ribbons.  Instead, I had a 15% overall five year survival rate, the “did you smoke” question from just about everyone, and an invisible ribbon as a symbol of my disease.

I was no stranger to challenges in my life, but why had this one come my way?  It all seemed terribly unfair.

I had a lot to learn.  Life isn’t fair:  not to me and not to anyone else either.  I had to go to a very dark place to finally understand that, and to become, in an odd way, at peace.  It was OK:  not as in everything was going to be alright, but rather, it was what it was.  I quickly tired of asking why and moved onto what. What do we do now?  We would know more after our meeting the following week with Dr. Mathisen.

A little like losing a brother

When I logged onto the computer this morning I saw the news about Patrick Swayze’s passing. So sad, but also remarkable that he beat the odds surviving (and not just surviving, working) for as long as he did. Pancreatic cancer is brutal, with a more dismal five year survival statistic than even lung cancer (5%).  My father, Ollie, was diagnosed with pancreatic cancer a few months after my own diagnosis, in September of 2005.  He passed away two and a half months later, on thanksgiving.

I felt a kinship with Patrick Swayze on many levels.  I knew he was in a hell of a fight and I admired his courage and perseverance.  He had appeared in several movies that for one reason or another were iconic in my life.  “The Outsiders” (from the S.E. Hinton novel that was required reading in elementary school), “Dirty Dancing”, “Point Break” and “Ghost”, all resonated for me.  He also bore an uncanny resemblance at times to one of my own brothers; particularly in the movie “Ghost” (my siblings and I would cry all the harder when watching it because of that likeness).

And then there is the fact that we (those of us with cancer) can’t help but identify with the struggles of everyone else with this disease.  It’s almost like a club, a big stupid club, that none of us asked to join, but here we are none the less.  It is not at all exclusive and we admit new members daily.  Membership is for life, but not necessarily long-term.  When a celebrity joins our ranks, they immediately assume a high profile.

I have anxiously watched Dana Reeves, Peter Jennings and John Updike battle lung cancer.  I have personally grieved when they lost those battles.  Paul Newman, Farrah Fawcett, Ted Kennedy and now Patrick Swayze have succumbed to lung, anal, brain and pancreatic cancer.  Because they were public figures, their personal battles were public as well.  I couldn’t help but feel that I knew each of them, just a little, and had done so for years.  And in each case it was also made painfully clear that no matter how famous or well connected you are, it may not be possible to beat cancer.

At the end of the movie “Point Break”, Patrick Swayze’s character Bohdi pulled a “Thelma and Louise” and rode his surfboard into the sunset.  His game was up, and he wanted to go out his own way.  That is how I will remember Patrick Swayze.

Hearing the words “you have cancer “

In April of 2005, when my pneumonia persisted despite three weeks of antibiotics, I was finally given a CT scan.  The scan suggested the possibility of a more ominous diagnosis:  if the mass in my left lower lobe wasn’t pneumonia or perhaps a fungal infection, than it could be lung cancer.  I was admitted to a local hospital, where I was placed in a room with three other patients.  I was given antibiotics intravenously as we awaited a biopsy.

This was a hellish time for me.  I was scared, one of the women in the room appeared to be dying, and the woman in the bed directly next to mine was a histrionic who had been admitted to the hospital with an asthma attack.  She commanded, and got, a lot of attention.  I put on my iPod and tried to drown out the sound of three different televisions.  By the third day, I was finally moved to my own room and so at least I had some peace and privacy again (well, as much as is ever possible in a hospital).

On day four, I was wheeled to the surgical wing where a needle biopsy would be performed.  The patient directly in front of me was handcuffed to his wheelchair and accompanied by a police officer.  I didn’t pose a flight risk, but was advised not to speak and to hold very still both during the procedure and for several hours afterward, as there was the possibility of a lung collapse as a result of the needle puncturing my lung.  I was given a partial sedative and a black dot was tattooed on my back directly above the suspicious mass.  A needle was inserted into the dot and a small amount of material removed for the biopsy.  In the recovery room, the surgeon told my husband and me that he felt this was a fungus, as it was a very atypical presentation for lung cancer.

In spite of my efforts to remain still, my lung partially collapsed.  An IV in my arm clogged as well, and my forearm ballooned up.  Even given the minor complications, I felt pretty calm.  I think I was just so sure that I didn’t have lung cancer. Statistically, a diagnosis of lung cancer at the age of 45, having never smoked, was highly unlikely.  I clung to that statistical improbability like the lifeline I hoped it was.

The results were to be available by the following morning.  My doctor came by on her early rounds, but my husband was not at the hospital yet.  She passed the time until he got there talking about her daughter’s role in a play at school.  I remember her describing sunflowers as part of the stage scenery, and how the motif had something to do with hope.

And then David was at the hospital and the next thing I knew she was saying to me those very words none of us ever wants to hear:  “I’m sorry, but you have cancer”.

A moment earlier I might have been in a plane;  perhaps flying over a field of sunflowers.  But then, suddenly, the plane began to hurtle toward the ground.  I struggled for composure even as fear and intense nausea overwhelmed me.  It felt like a dream, a very bad dream.  And in truth, the nightmare was only just beginning.

An unexpected trip to Boston

Yesterday found me scooting down the highway to Boston again.  The dermatologist at MGH had a cancellation, and I was in need of a checkup.  Almost twenty years ago, at the age of 30, I had a basal cell carcinoma removed from my lower back.  My father had numerous, lesser skin cancers, as well as melanoma, and one of my sisters has recently had a basal cell removed.  Given the family history, I have been a tad too casual about screening, and this was going to be my first head to toe check check ever.

When I became a card carrying member of the cancer club, any other physical complaints were quickly ushered to the back of the bus.  If a symptom is not directly related to my lung cancer, I’m pretty apt to dismiss it.  I had a cracked molar that had a filling (its second) which was almost as large as the tooth itself. My dentist wanted to put a crown on it;  this was two years ago.  Although I had not yet been restaged, I was well aware that there was a significant amount of something in my lungs.  Dr. Tom Lynch was my oncologist at this time (he has moved to New Haven as Director of the Yale Cancer Center), and “schmutz” was his word for this unknown entity.  At one of our scan reviews, I asked just how many nodules, or bits of “schmutz” was the radiologist describing.  “Oh, approximately 33”.  The “approximately 33” cracked me up:  sounded pretty specific to me.  On the other hand, it was incredibly sobering.  If this was cancer, I was loaded.

Anyway, back to the dentist.  She suggested the dental work just after my scan review.  I just flat out told her that I wasn’t even sure how long I was going to be alive, and that I was not inclined to spend either money or time on my teeth. Instead of a do not resuscitate order, I issued a directive to do only what was absolutely necessary.  Two months ago I had the long delayed dental work done.   It was a vote of confidence:  I am now of the mind that I might be here for awhile, and that I should take care of my garden variety problems.  So, along this meandering line of thought, I figured it was time to follow up on my skin cancer.

I arrived at the office perhaps fifteen minutes early, and hadn’t time to even fill out the paper work before I was led into an exam room.  I was handed a paper gown and told to disrobe entirely.  The gown fit as well as any paper garment might be expected to, and I did my best to make myself comfortable.  Within minutes the doctor entered, introduced herself, and asked if I would permit several residents who were shadowing her to observe.  This is a request that I seldom refuse, as I feel it is a small contribution that I can make to the practice of medicine.

As this was a teachable moment for the residents, a discussion immediately ensued as to the significance of a basal cell cancer at the age of thirty.  Evidently that is young, and could point to a possible underlying disorder. The palms of my hands, the joints of my fingers, and my jaw were all examined, and it was determined that I had none of the markers of this disorder.  I was as curious as the residents, as the dermatologist who removed the basal cell had seemed perfectly nonplussed about it.

And then it was time to disrobe and undergo the full body check.  Momentarily, I regretted my willingness to admit the residents, as there were going to be not one, but four individuals gazing at my naked self.  I summoned my courage, but not before telling them that there were not many things that made me more anxious than sitting on an exam table dressed only in paper.  The residents laughed nervously and I realized that perhaps they were uncomfortable as well. That made four out of the five of us.  The doctor checked me front and back, top to bottom, noting some benign features as well as one mole that should be watched. She did question me about the white circle on my back, wondering whether or not that was the result of a medical procedure.  I had forgotten to mention my tattoo.

I left the office with most of my dignity intact and an appointment for next year.  I will write it on my calendar for 2010 with a particular joy, as making plans for one year hence is nothing to take for granted.  I won’t be a no show.