Monthly Archives: March 2011

Hope: one of life’s staples

Last Tuesday was my day to drive to Boston for appointments. It had snowed several inches the night before, (spring, what spring?), but the main thoroughfares were clear. Dr. Shaw was on a well deserved vacation last week, so I met with her nurse practitioner, Stephanie. When I went to infusion to pick up my paper bag full of crizotinib, I was led to a bed rather than a chair, which meant I would have a brief acupuncture session with Irene. She always inquires as to what sort of treatment I would like, and this time I asked her to expound upon the possibilities. When Irene mentioned euphoria, I told her that was exactly what I was looking for. Six needles later, and I was feeling blissed out. Count me in as a believer.

At the conclusion of my appointments that day, I had a date with my friend Ginger. She was diagnosed with lung cancer twenty six years ago, and despite an initially poor prognosis, Ginger’s still enjoying life. I also have a neighbor down the hill, Nancy, who twelve years after a diagnosis of advanced lung cancer, has been told by her oncologist that she doesn’t need to see him again.

Linnea and Ginger

I view Ginger’s and Nancy’s continued survival as the sort of encouraging news that can keep me going even on a bleak day.

True confession:  I’ve been dealing with a little bit of personal malaise. Some of it is distinctly seasonal. As David aptly noted the other day, winter has really worn out its welcome. Today’s temperature is barely above freezing, the wind is howling, and our yard yet resembles a glacier. Peter was sick over the weekend and I’ve become unwilling host to the virus as well. “I’m sorry I’m such a vector”, he said yesterday.

And then I received an email from my dear friend Guillermo which contains bad news. He gave me his permission to reprint it:

Look for clinical trials for guys running out of options.
Remember to mention Letting go from The New Yorker
You can include this email or part of it in your blog.
I will say Hola to my amor Beryl and Honey too.
I am taking dexamethasone steroids and feel great in a real greater sunny day.
I have stumbling news that you can see in email copy to Diana and Laura:

Soon we are going to be free to enjoy vacations, for Beryl and I my first choice is a cruise on rivers of Spain and or Portugal.
Maybe in summer also we can go the four of us in 7-10 days rivers cruise to our roots , maybe our last trip together paid by me.
Laura and Diana can reconnect sharing a cabin. We all can share dinner tables and port side trips. Opportunity calls.

Chemo with Alimta, my last hope, was suspended with poor results on X-ray 23 Feb comparison with prior 7 February 2011:

” Bilateral pulmonary parenchymal modular opacities are more numerous and larger than before.

A predominantly loculated right pleural effusion with opacification of the lower right lung is unchanged.

IMPRESSION: Progresive metastatic disease; lymphangitis carcinomatosis of the right lung.”

Note: in 2005 the NSCLC diagnosis was for 15% survival at 5 years, today over 5 years latter and knowing my original symptoms and analysis of similar tumours gives me 8+ years with my lung cancer. Abuelos lived over 90+ years with poor support in Argentina.
I expect to enjoy more life that the average patient. Don’t worry but participate and support me.

I envy Placido Domingo voice and lungs. A vacation in his and abuelos country  is appealing.
He just did a free concert in Buenos Aires, 9 de Julio avenue, 150,000 people attended.
Here a few tangos with him

Abrazos y besos Dad

I was really, really hoping that the Alimta would do the trick for Guillermo. However, I continue to admire (and adore) his spirit. I am reminded of something I read in a book compiled by Philip Harnden:  Journeys of Simplicity, Traveling Light. In this particular passage he wrote about the poet Raymond Carver, who was diagnosed with terminal  lung cancer at the age of fifty. After his death, an errand list was found in one of his pockets:

peanut butter
hot choc



Hope. The expectation of warmer days and further options; longer lists and continued adventures.

And so I stumble (momentarily)

On Tuesday we experienced a beautiful day of sunshine. Buddy and I went on our two mile stroll down and then up Blueberry Hill. It really felt as if spring had sprung. And then on Wednesday we awakened to a sunrise that lasted but minutes before a snow squall swallowed it whole.

Soon the squall became something closer to a winter storm, and by one thirty in the afternoon, there were four or five inches of very wet snow on the ground. I needed to get groceries, and it was a struggle to even get the car up our steep driveway. What should have been a twenty five minute trip was forty five. By the time I pulled into the parking lot of the market, it was raining. By four p.m., the sun was shining and all that snow was beginning to melt. Crazy making day.

Thursday we awakened to more sunshine. After dropping Pete at the bus stop I pulled into the little store where I buy the newspaper. As I walked up to the door I stepped on a patch of black ice and in a flash, I was on my back.

Ouch. Nothing more serious than a bruised bum, but I’m getting a little old for this falling down stuff.

And no, I didn’t ask where I was; I just got up quick(ly).

It was a warm, wild, gusty day on Friday and Buddy and I took another two mile walk.  That’s six miles this week; we are finally getting back to our pre-winter quota. By the late afternoon, the wind had picked up even more. Suddenly the air was filled with cries, and I looked out the window to see a huge flock of white birds with back tipped wings passing overhead. I yelled for Peter to come and I realized these were snow geese. Many more followed, members of a large flock that had likely been blown off their migratory path by the unrelenting wind.

So, birds may not stumble but obviously they too can get off course.

Saturday morning Peter and I arose early as he was to register for the exam at the Academy for Science and Design by 8:30 that morning. And wouldn’t you know it; my mapquest directions again failed to correlate with reality (and/or available road signs). Once I realized I had missed our turnoff and that we were lost and would be late, I began to cry. Just a little. Dear, sweet Pete, who was already stressed by the prospect of a three hour exam, was the one who stayed calm and assured me that he was certain they would let him take the test even should we be late. What a kid.

So I pulled off the highway and got some directions as to where the missed exit was. We were only ten minutes late.

Sometimes we think we’ve got everything under control only to find out that’s not the case. If we fall, we get up again. If we are lost, we somehow find our way. It’s all about survival.

Finding my footing

It’s an in-between time. The past week we had both rain and snow; what the meteorologist refers to as a wintry mix. Wintry mess is more like it. The snow lining the roads is now blackened with a dirt/sand/salt melange, the sun has made only the briefest of appearances, and what with the frequent wind, it feels a bit raw outside.  Bleak, in a word.

Not quite winter and not yet spring. And my mood is much the same. As we prepare to move, I am not only packing and painting walls, I am beginning the process of emotional detachment from our current home. It is, in all respects, an unsettling process. And my thoughts have been at loose ends as well.

I believe I have a plan to get back on track. In a few weeks I will hit my six years since diagnosis anniversary. I’ve been thinking a lot about my continued survival as well as certain lifestyle changes that have been helpful to me in this journey. So in those moments when I am not wielding a paintbrush or taping up boxes, I am going to start spelling out those practices which help keep a bounce in my step.

I’ll conclude today’s blog with a children’s poem written by Carl Sandburg. It illustrates rather sweetly what I feel to be one of the most important attributes in survival; the capacity to keep going even after a fall. Brush yourself off, and try again.


Stumbling is where you walk and find you are not walking.

Stumbling is where you find yourself spread on the ground, instead of standing on your feet.

Stumbling is where your feet try to make a fool of you.

Stumbling is to go where you are not looking when you mean to go where you are looking.

Stumbling is to get your feet mixed so you go down.

Stumblers are two kinds, those who come up quick and those who say, “Where am I?”

If you never want to stumble, be a fish or a bird.

Carl Sandburg


I awakened yesterday to the tragic news about the earthquake and tsunami in Japan. Yuki, my long time crizotinib trial buddy who lives there, responded to an email and she and her family are fine. I am so relieved but very sorry for all those who have lost so much in this natural disaster.

Could this be spring fever…

I’m restless and distracted and struggling a bit when it comes to sitting down and writing. A blog of ‘substance’ is in the works, but in the meantime I figure I’ll just put up some pretty/gritty photos from our trip to the south shore last weekend.

I had fun wandering around New Bedford near Jem and Jamie’s apartment, and the interior shots are from Meema’s empty house. The bowl of eggs came from her bantam hens.

See if you can spot the accidental self portrait. I’ll have to remember to make a happier face the next time I take my own picture.

Old shoe

I have a fascination with shoes as objects (the image on the left is a wee painting, just about to scale, that I did many years ago). Not only are shoes interesting in their ‘vessleness’ (they hold our feet), they take on the characteristics of the wearer in a way unlike any other garment with which we clothe ourselves.

The other day Peter and I were running errands and I remarked to him that I thought we had a good life and that I wouldn’t trade places with anyone. Happily, he felt the same way.

You see, my life fits me; just like an old shoe. Broken in, imperfect (my left shoe will always be too large as I must honor the right foot, an entire size larger, when purchasing shoes), but ultimately, comfortable.

That said, merely being comfortable isn’t all there is to a full life.

At the moment we, David, Peter and I, are making some plans that could move us out of our current (and very comfortable) environment.

It began with Peter’s awakening interest in robotics and engineering. He just spent the past two weeks building and programming a robot from a kit. At the age of thirteen, he is already charting a future that would include attendance at a top tier technical university (think MIT). As his parents, we want to do whatever we can to help him realize his dreams, and a solid preparation in science and mathematics is a must. We love his little private school, but it is geared toward the liberal arts, and as a result, Peter now has a very solid background in history and languages.

Some weeks ago I began to look around for an alternative and happened upon a charter school in southern New Hampshire that adheres to the STEM (science, technology, engineering, mathematics) approach to education. We began the application process and are currently crossing our fingers that Pete will be accepted. Of course, this will necessitate a move, and we are working on that as well.

Big changes. There will likely be some discomfort in this planned transition but also several potential benefits. For instance, I might be able to reduce my travel time to the hospital to just over an hour, and David would be very close to an airport.

So I’m kind of in Cinderella mode again; looking for a magic slipper that fits all three of us; not just any old shoe.