Monthly Archives: December 2009

Four millimeters of anxiety

On Monday morning I drove to Boston for my monthly meeting with the trial team.  The roads were largely empty, as many people are yet on holiday.  When I arrived at the tolls, there were actually more vehicles in the northbound lanes, likely filled with skiers, boarders and snowmobilers.  This meant I had a commute minus the usual stop and go, which is undeniably a more pleasant trip.

After my labs, I met with Dr. Shaw to go over my latest scans.  Although some people are under the impression that I am now disease free (a notion that the media has perhaps inadvertently encouraged), medically my situation has never been characterized that way.  My response to the trial drug was indeed dramatic, but it was a partial response. This is due to the fact that there are still areas of abnormality in both lungs.  The radiologist’s report describes these regions in the following language:

“The patient is status post left lower lobectomy.  There are stable postoperative changes.  Again noted are persistent and unchanged focal areas of interlobular septal thickening with micro-nodularity/irregularity.  There is biapical scarring. There are multiple pulmonary nodules which measure up to 7 mm which are stable relative to the study of 2/24/08.”

Before I went on trial, my lungs were carrying a heavy cancer burden.  Much of what is seen on the scans now may represent inflammation or scarring, not an unreasonable scenario given the amount of disease that was present previously. What the radiologist is really looking for is stability or the lack thereof.  Whether the presenting nodules are benign or cancerous, stable is the next best thing to resolved.

This report noted one nodule that appears to have increased in size:

“In the left lung…there is a 4-mm nodule which first appeared on the study 3/13/09 where it measured 2 mm.  It has gradually increased in size over the multiple consecutive studies.”

Well.  What does this mean?  Undeniably, it could be suggestive of recurrence. However, there are other possibilities as well.  It is a tiny, 4 millimeter red flag. There is nothing to do at this point but watch and wait.  I don’t deny that it makes me anxious, but I have to remind myself that whatever this nodule represents, it is very small and apparently not very fast growing.

Following my appointment, I met up with my good friend Sally, who was visiting family in Brookline.  I joined Sally and her relatives for a preemptive celebration of the New Year. Our champagne toast to the good health of all gathered was particularly poignant, as one of Sally’s sister-in-laws is in treatment for Burkitt’s lymphoma.

After dinner Sally and I retired to the Marriott for a sleep-over, as I had an appointment scheduled for yesterday morning with the orthopedic department. My ankle is healing very well, and I even got a tentative thumbs up for a few runs on the ski slope.  As long as it is a gentle slope, there are no children or other people around, and I don’t fall…I’m good.  I might give it a shot.

I drove back to New Hampshire in a fierce wind and single digit temperatures.  It had snowed overnight, and I’d missed out on a serenade by a pack of coyotes in our backyard.  In addition, David found moose tracks in the woods.  It is always comforting to come home to this rather wild and wooly place where nature is simply going about its business.  My own worries seem inconsequential compared to the daily struggle for warmth and food that is part of being a wild animal.  We, each of us, are striving to get through another day; another night.  I have heard that one of the purposes of the cacophony of birdsong at first light is a roll call of sorts.  Each bird is singing to its neighbors:  “I am here, I am here”. And so we are.

Santa was in the house

The lake finally froze over during the day on Christmas. It has been cold enough to do so for some time now, but until now very windy with the water always in flux. Today, the day after Christmas, it has begun to snow. I have stayed in my pajamas all day, and lain on the couch in front of the fireplace, reading The Voyage of the Narwahl by Andrea Barrett. As it involves an expedition to the arctic and a ship that must overwinter after becoming trapped in the ice, it seems a very fitting story for my own housebound state on a wintry day.

It has been a lovely holiday. On Christmas Eve we were joined by Jemesii and her husband Jamie as well as our dear neighbors Harold and June. David had been simmering a ham for the entire day in Madeira. I prepared green beans with ginger and poached some pears.  It was a festive meal, but I retired not long after dinner, as I had been on my feet too much and my ankle was quite swollen and sore (just as I was beginning to think that maybe I would be able to ski after all this season).

I needed to arise early in the morning to make a coffee cake using my mother’s recipe and my Grandma T’s bundt pan: always a sentimental task. Peter has recently discovered the joys of sleeping in, and also exhibits all the Christmas morning restraint of someone who is almost 13, so he set his alarm for the reasonable hour of 8 am. Of course, once he’d awakened, he did his best to hurry us all in to the tree and the presents that lay beneath.

Going through our stockings and opening our gifts is always a good deal of fun, as Santa and company tend to make some fun and quirky selections. Among this years favorites were an old stadium light bulb mounted on a stand that Jem and Jamie gave me, and a fabulous mechanical bank that Peter found for his dad at the local Goodwill. It is a very irreverant take on the tale of Jonah and the Whale: Jonah is tossing a nun into into the mouth of the behemoth.  My gift from Peter was a wonderful fish that he carved from stone in a class at school.

In the afternoon, we made a quick trip down the road to our friends Mary and Raleigh.  They constructed their home many years ago from the salvaged remains of two barns and a house, and it sits like an enchanted cottage at the end of a long driveway.  Raleigh, who has a snow white beard and hair, sported a red t-shirt with SANTA printed on the front. After a toast in Swedish, we ate pickled herring on crackers and drank frosty aquavit.

After we returned home David prepared a dinner of fresh lobster (he loves to cook, and does it very well).  Today he made us lobster rolls for lunch with the leftovers.

Now we are drinking a glass of wine and soon Jemesii and I are going to watch L’Iceberg, in sticking with the general theme of the day.

I’ve said it before, and I’m going to keep saying it…I’m having a great time at this party and I’m hopeful I won’t have to leave anytime soon.  Life really is great.

That magic feeling

When I awakened yesterday after a restless night, it was seven degrees outside, the wind was howling and I still had the sinus headache I’ve had for several days. It was also my day to drive to Boston for a CT scan. I dutifully sang my little song, “I’m alive, I’m alive, I’m alive,” before stumbling out of bed.

Slightly revived by a cup of coffee, I realized that not only was it the winter solstice, but our son August’s 24th birthday. So that was a good thing. When it was time to go, David had already started my car and turned on the heater. Which made me feel warm inside and out.

I popped Cat Power’s “Free” into the CD player and I started down that long and windy road.

When I am a passenger in a car, I almost always fall asleep.  However, if I am driving, I am not only alert, but also in a mode very conducive to thought.  Ideally I would learn how to utilize a recording device, as I’m pretty certain many of my most creative ideas come to me while behind the wheel.  Maybe I should have been a trucker cum artist–it might have proved a good combination.

By the time I arrived at the imaging center, I was itching to get inside and jot a few ideas down.  I selected a seat in the waiting room next to the thick plate glass windows.  The glass kept the wind out but admitted sunshine, and when I was done writing I closed my eyes and enjoyed the warm sun on my face. My phone rang.  It was Jose and the first thing he said was “Why are you answering your phone?  Isn’t there a sign that says no cell phones?”  That’s Jose. He was calling to wish me a good scan and a Merry Christmas.  Moments later, my name was called.

After changing into your johnnies, you place your belongings in a locker.  There were three lockers left:  numbers six, eleven and thirteen.  I made a mental note to grab eleven (half of my lucky number), but when I came back around the corner a gentleman was already placing his belongings in that spot.  So it was six. As I joined him in the waiting room, I made a comment how nobody wanted locker number thirteen.  He concurred that prior to a scan he was looking for all the good luck he could get.  We discussed the fact that we were both, perhaps against all reason, superstitious.  I shared with him that as I enter the CT scanner, I always visualize my lungs as clean and healthy.  His scan was of his brain, but he has been doing the same thing for eleven years now.  I think maybe he needed that number eleven locker.

Whether or not I actually believe in magic and superstition (for many people prayer would replace my chants and visualization), I do have faith in the power of these beliefs.  The comfort of ritual is part of the equation.  But more than that, the possibility that all evidence to the contrary, there just might be a miraculous solution to a seemingly hopeless situation.  Call it hope if you will.

When I was diagnosed with lung cancer I was well aware that my survival was a long shot.  Once my cancer had spread to both lungs, it would have been very easy to lose hope.  This is where my imagination has been useful.  Since childhood I have enjoyed fairy tales and fantasy novels and films.  At times I picture myself as a character in one of these sagas.  A character faced with insurmountable obstacles who will nonetheless prevail.

It is fantasy, this dabbling in magic thoughts.  But as it involves positive imagery, because it is comforting, I will continue to believe. If not in magic, than in the power of hope and of a strong will to live.  And the very real possibility that this attitude  manifests in a stronger immune system.  It’s a heady mix; science, medicine and a belief in otherworldly sources of power.  Yet it is possible for these different approaches to be complimentary as well.  It works for me.

The meanings beyond a coincidence

Well, I finally got that H1N1 vaccination yesterday.  Ten days from now I will be able to breathe easier, although I have to wonder if this virus that my family and I have been fighting might have been the swine flu.  It is now thought that one in six people in the United States have already contracted the H1N1 flu, so obviously a lot of those cases have been relatively mild.

David and Pete brought home a Christmas tree yesterday.  I always counsel that maybe smaller would be better, but yet another nine foot tree has taken up residence in our living room.  Tonight we will put on the holiday tunes and hang the ornaments.

I also acquired a new pen pal.  There is another Linnea Duff in the world; I have seen her name before when googling myself.  She found me via facebook and took the initiative to contact me.  It turns out we have much more in common than our names.  She is actually the second Linnea to reach out to me, and now I have two friends who share my name (which I think is great fun).  It is just one of the many positive attributes of the internet:  the ease with which we can connect with others.

Coincidences and happy accidents are sources of great delight for me.  I view them as evidence that for all the seeming randomness in life, there are certain threads that connect events and people to each other.  I suppose some would attribute this to intelligent design.  I’m not sure if I believe that, but I do take comfort and even sometimes read meaning into coincidental events.  Just another yes in the universe.

I have been reading Three Cups of Tea, by Greg Mortenson and David Oliver Relin.  I just came across this paragraph:  “At the Kabul Medical Institute, the country’s most prestigious training center for physicians, they stopped to donate medical books that an American CAI donor had asked Mortenson to carry to Kabul.  Kim Trudell, from Marblehead, Massachusetts, had lost her husband, Frederick Rimmile, when, on his way to a medical conference in California on September 11, his flight, United Airlines 175, vaporized in a cloud of jet fuel against the south tower of the World Trade Center.  Trudell asked Mortenson to carry her husband’s medical books to Kabul, believing education was the key to resolving the crisis with militant Islam.”

Frederick Rimmile was my physician, and in my post in regards to my misdiagnosis, he is the doctor whom I’m certain would have made a proper and more timely diagnosis if he had not perished on September 11. In reading these words I felt momentarily stricken, but then so amazed by the gracious and meaningful donation that his wife Kim made.  There must have been a time when she was paralyzed by remorse and anger, but it was obvious she had moved beyond those emotions and was now seeking to be part of a solution to the very problems that lay behind her husband’s horrific and untimely death.  I was, and am, so moved.

Bad things happen.  I am here, as are most of you who are reading this, because our lives have been touched (touched seems too gentle) by cancer.  Just as I would love to rewind those horrible images of the twin towers; to divert those airplanes and the hatred and anger of those who were using them as missiles, I wish we could all return to a life without fear and illness.  What’s that quote, “If wishes were horses, than beggars would ride.”  In the end, I can only hope to be part of the solution, to help bring my own version of awareness to lung cancer.

According to WHO, cancer will be the leading cause of death in the world in 2010, and the vast majority of those cancer deaths will be from lung cancer.  This is one war with an undisputed common enemy, and I would love to see the world join forces to defeat it.

Just as Greg Mortenson and Kim Trudell realized that education was an effective method to combat terrorism, so too is education necessary in the war on lung cancer.  And I think it’s time for that education to move beyond the evils of tobacco.  I mean, we get it, right?  Smoking cigarettes is bad for your health (make that our health, as second hand smoke is a big part of the problem). However, as much as I wish it wasn’t so, Big Tobacco is going to keep selling their deadly product to no shortage of consumers.  People are going to keep getting lung cancer.  And as the number of never-smokers with lung cancer rises, we’ve got to start looking more closely at all the other carcinogens in our environment that may be contributing to this trend.

It is time to make people understand that lung cancer is not just a problem for smokers, it is everyone’s problem.  We need to get the word out about the necessity for more effective screening and for  a greater number of treatments that actually work.  More time, more focus, more money needs to be channeled into lung cancer research and less to smoking cessation because frankly, that’s a no-brainer.

It’s no coincidence that greater progress has been made against the diseases that receive more attention and far better funding, breast cancer for instance.  Let’s all do what we can to bring lung cancer to the forefront.  There are simply too many of us with this disease to remain invisible.

A breath of fresh air

Yesterday evening we attended the most amazing chamber concert at Peter’s school.  The performing group was The Tempest Trio, with Ilya Kaler on violin, Alon Goldstein on piano and Amit Peled on cello.  All three  are world renowned musicians, and the instruments they were playing were exceptional as well:  a 1900 Steinway, a 1735 “Sennhauser” Guiseppe Guarneri del Gesu violin, and a 1689 Andrea Guarneri cello.  And then there was the venue.  The Sant Bani School that Peter attends is not your typical private school.  It is at the end of a dirt road, and although the education is first rate, the buildings are humble and perhaps a wee bit shabby.  The auditorium has a stage, but is really a small multi-purpose room.  However, the acoustics are incredible.  Because the space is so intimate in scale, we were close enough that I could make out the individual strands on the bows.  What a rare and special treat.

This evening we will head south to Ipswich, to attend a good friend’s 50th birthday party.  Ipswich was our home for 11 years, and tonight we will have a chance to mingle with a number of our old friends. We will be sleeping over at another friend’s home, and we are looking forward to catching up with her as well.

These entertaining pursuits are a nice break from the pre-Christmas preparations.  Not that I am into baking, sending greeting cards or decorating.  I am, in fact, the anti-Martha Stewart.  I do love setting up the Christmas tree and I adore giving presents.  I have a big family (actual and extended) and I try to make each gift really special.  The treasure hunting that I engage in comes in quite handy at this time of year.  Not only are thrift shops a good antidote to a tough economy, they pretty much guarantee that the selections I make will be one of a kind.  Case in point:  This year my brother John (I can post this because he already knows) is getting a vintage 1960’s leather motorcycle jacket.  I had found one for myself that he adores, and eventually one in his size materialized.  It’s just what he wanted and I think even Santa would have been hard pressed to find one.    

While on the subject of treasures and unexpected delights, I would like to take a moment to express my gratitude to everyone who makes the effort to tune in to this blog.  I know you are all out there because my “dashboard” allows me to see the number of views each day.  As well, some of you submit comments. I just think that is so cool, when you decide to reach out to me.  Your responses to what I have written make this a conversation, and about us, rather than just the musings of one person.  I don’t even know how to express how connected I feel to each of you, and how important some of these relationships have become to me. I just visualize each of us holding hands as we walk through this sometimes scary place, and it makes me feel stronger and more confident.

Fine music, celebrations and family, and the gifts of time and friendship.  In this busy season, I must remind myself to step back and take a breath:  as my good friend Jose says, “it’s all good”.

Trying to stay out from under the weather

Yesterday school was cancelled and we did our best to stay snug in the house as a blizzard roared outside.  More inclement weather was brewing inside, as we’ve all fought a virus off and on for several weeks now.  I’ve developed a cough over the past few days, and ever since my diagnosis, it is hard for me to view this symptom as benign.  In addition to worries about recurrent cancer, (always part of the background noise), we are now anxious about H1N1 flu.  There has been no shortage of hype regarding this illness and its potential to burrow deep into our lungs.  What there has been is a shortage of vaccine, and despite my continued queries, I have been unable to secure a dose for any one of us.  You would think that people with lung cancer might be in one of the early tiers, but that is simply not the case.

Anyway, what we are dealing with is likely just a garden variety virus.  In addition, the snow petered into sleet last night and today the sun is shining.  I always find it easier to have a positive, or sunnier, outlook when that is the case.  My attitude is something else I no longer view as inconsequential or benign.   When I was initially diagnosed, I was frightened, angry and depressed all at the same time.  I didn’t even try to fight these feelings.  They, in fact, felt like a totally justified response to the set of circumstances.

Justified or not, once I got all that sadness and rage out of my system, it was time to move on.  My dark mood evolved into dark humor, as I once again felt the necessity of laughter.  Eventually, heeding the advice of my oncologist, I sought counseling and began taking an antidepressant.  Both were extremely helpful to me.  At a certain point I felt I no longer needed either the medication or the counseling.  However, when it was confirmed that my cancer had spread to both lungs, I needed no urging to return to both practices.

You see, I really want to do whatever I can to promote my survival.  I take my medicine, I do my best to eat well and to keep moving (excercise when possible, but just keeping busy when it’s not) and I pay a lot of attention to what is going on in my head.

I read a really interesting quote from the book The Survivor’s Club, by Ben Sherman.  He said, “The twin enemies of survival are fear and inflexibility.  Fear is demotivating and paralyzing.  Inflexibility means that you don’t adapt to the new reality.”  Part of my new reality is living with a terminal illness.  I really need to be at the top of my game so as not to let that paralyzing fear get the best of me. Having my head in a good place is going to make a big difference when it comes time to weather the storm.

A chance acquaintance, first snow, and a return to routine

Yesterday our first real snow fell.  Pete had a friend spend the night, and as soon as they finished breakfast I rummaged through our winter gear to outfit them both with boots, mittens and snow pants.  They’ve now been outside for a couple of hours; romping and tossing snowballs at each other and at David, who is shoveling the driveway.  I tromped through the snow as well in order to take a few pictures of the snow on the ground.  Undoubtedly there will be plenty more of this where that came from, but the first snow is always an occasion for celebration.

David and Jemesii made it back from Texas late Friday night, after a hectic day of delays and missed flights due to the unusually wintry weather they were having in Texas.  I had asked David to take some photos of our house and the snow in Marfa, and he brought back some great ones.  Some day I would like to be there during such an event.

Here at home we are finally returning to a semblance of routine.  We really had to hit the ground running upon our arrival, but after a hectic few days, we are sorting it all out.

On Thursday I drove to Boston for my monthly appointment with Dr. Shaw and to pick up my supply of PF-02341066.  She told me that Phase III of the trial would be officially starting this week.  We discussed the fact that the hospital (MGH) has once again been inundated with requests for information as well as testing for the ALK mutation. And of course, we marveled at my continuing good health.  It is all very exciting: to know that others are discovering that they have the ALK mutation and that they may be eligible for the trial.  And that these individuals, just as I have, will likely regain both a period of better health and greater hope.

After my appointment, I went to Whole Foods to grab some lunch.  It was high noon and quite crowded.  When I attempted to sit in what appeared to be an empty seat, I was told by a woman and her friend that they were saving it.  I sat on the other side of the table, and when a young girl approached the seat I had just been turned away from, I told her that I thought it was taken.  That seemed silly of me, and I turned to the woman to my right and said “I guess that isn’t my job, is it?”  She concurred, and when the next person came to the table, I said nothing.

Well, it turned out to be a rather lucky turn of several events.  After perhaps five minutes, the woman who had just sat down across from me made an offhand comment that we were the two quietest people in the very noisy store.  I agreed, and we began to converse (quietly).  Somehow this conversation led to the fact that we had both been diagnosed with lung cancer.  Remarkably, it had been 24 years since her diagnosis.  I was elated, as I am always “looking” for long term survivors, and frankly I had never heard of anyone who was 24 years out.  I told her how inspiring this fact was to me, and then we exchanged contact info and agreed to meet for lunch on one of my trips to Boston.

So you see, never say never.  It does snow in Marfa on occasion, and there are long term survivors of lung cancer.  I feel honored to have made the acquaintance of one.

Some parting shots of Marfa