Monthly Archives: July 2011

Trying not to miss the boat

I recently received this greeting card from my stepmother Carolyn. The message inside is “A bad day is all about perspective”. I find it hilarious and awfully apropos.

A new day is a good day. Upon first awakening, I wiggle my toes and sing my little ‘I’m alive’ ditty, roll over on my stomach into the cat and then the child pose, and after a glance at the word ‘Gift’ (framed on my bedside table), seize the day.

Or, rather, grapple with it. I would be less than truthful to imply that there have been any sustained passages of time where everything ran smoothly. I crave order but court chaos.

In possession of a dreadfully short attention span, I am interested in so much. Shy but outgoing, clean but messy, in love with simplicity but also acquisitive. My husband said to me not long ago, “Linnea, you can’t have everything you love”.

Before you misinterpret that statement, David is not talking diamonds, but rather something broader : experiences, people, places and yes, sometimes objects…I am greedy in my desire to take it all in.

Lacking focus, I am not just open minded; my mind gapes. Much falls in, more tumbles out. My retention is spotty and often short on supporting details. Many years ago, as a student in France, I had a poetry teacher whom I adored, Gustaf Sobin. In response to one of my poems he said: “It is like a sandwich. You have the meat, but where is the bread?”.

Ah…the  bread, or substratum which supports the yummy part. How to build a sandwich, and perhaps a sustainable life as well.

I’m trying to attend to all the niggly details of getting our new home in order while yet honoring the competing  demands of summer’s child (Peter), and my progressing symptoms. This past week Peter spent two days with Mary and Raleigh, as their granddaughter Sarah, who is Pete’s age, was visiting. The kids had a grand time swimming, playing scrabble, frogging, and toading as well.

When I picked Pete up on Wednesday, we were flagged down by our good friend Amy. She handed us a container of grape sized blueberries that she had just picked.  No doubt part of our hearts will always reside on Blueberry Hill, as I don’t believe we will ever encounter such a concentration of fine and friendly neighbors again.

But life moves on. I love our new home and the fact that Boston is so much more accessible now. I remain quite active (yesterday I cleaned the pool, bathed and groomed the dog, took him on a walk, did laundry, fielded several phone calls and emails, tided the house, went to the post office and shopped for groceries before preparing dinner), but I am hitting a wall much sooner in the evening. I sleep longer and cough more. My next scan is more than a month away, but should my physical symptoms continue progressing at this rate, I may request a change of treatment sooner.

On an inspirational note: check out this video about the Aquadettes on a blog called California is a Place. It is lovely and poignant, contains a plug for medicinal marijuana (not my drug of choice, but works for some), and, well, will just make you smile.


Saturday was a day of extreme ups and downs. The bad/sad news about my friend Guillermo. A disturbing dream the night before; in which I had been attempting to climb to higher ground as a giant wave washed in, only to have it sweep me out to sea. I survived the tsunami, but as I back-stroked toward shore, what I feared to be sharks would bump against my legs and I wondered what it would feel like when they struck.

We were also scurrying to get out the door to Boston, where we would be attending an information session in regard to a camp Peter will be attending, and then dropping David off at Logan for a flight to England. We’ve yet to sort everything out from our move, and initially David couldn’t find his stash of business cards. As we got in the car, I asked him to check for his passport; he did, only to discover that it was an older document that had now expired.

Well, after momentary panic and a quick search of the house, the current passport was found tucked in another compartment in David’s briefcase.

Three deep breaths and an hour and a half later, we were at MIT; The Massachusetts Institute for Technology.

What a place. Sort of hallowed ground for those in love with sciences…Peter was indeed in heaven. I got a kick out of all of the bright young minds roving the halls; it made me feel smarter (kind of like osmosis) just being proximal to all that brilliance.

The reason for our visit was orientation for Camp Kesem, a wonderful opportunity for children who have a parent with cancer. Should you follow the link, you will see that it is geared for children ages 6-13. In reality, they accept teens up to age 18 and I’m not sure why that is misstated on their website; upon initially checking them out (after being alerted to their existence by my friend Diane), I assumed Pete would not be eligible, as he is 14. Further investigation at a later date corrected my assumption, but our application was turned in just before closing and Pete was wait-listed. Happily, two weeks ago we found out a spot had opened for him.

The counselors are all MIT students who donate their time to this cause, and their enthusiasm was contagious. It was all I could do to not start weeping; it is such a glorious concept (there is no charge, therefore making it available to families regardless of income) and addresses the unmet needs of a group that is so often disregarded:  our children.

At the end of August, Peter will have a chance to interact with other young people dealing with a parent’s illness in an unstructured environment where the emphasis is on fun; a much needed respite from cancer.

Afterward we took a short walk along Massachusetts Avenue, before deciding on a cafe called Flour for dinner. It was sooo good, and a lovely way to top off a day that had begun so painfully.

A scan and a plan; but first, a tribute

I had a message from Beryl, Guillermo’s wife, this morning. Guillermo Berazadi passed away on Wednesday morning July 13th. His wife and two daughters were by his side.

Although I have known for several weeks that this was an inevitable conclusion, I am beside myself.

Guillermo’s first contact with me was ‘I like your blog and I like you’. It was mutual, as I fell in love with this man of insatiable curiosity, humor, and zest for life. Guillermo’s comments were little novellas, and as he shared his own remarkable story, Gil built a devoted following. When he was silent for too long, I would receive personal emails inquiring as to his well being. I would then harass him (he like playing hard to get sometimes) until he burst forth with some fresh brilliance.

I am glad Guillermo is no longer in pain, but I shall miss him so. My life has been made richer by his friendship. I take comfort from the wise words of Stephanie (a member of the Guillermo fan club):

“G – as always, believe there is solid ground beneath us or that we learn to fly as we take that next step.”

Rest in peace, my friend.

And now, my own update.
Slight further progression compared to my scan of two months ago, however, rather significant progression in general. In other words, slow but steady.

As Alice (Dr.Shaw) said; she would have preferred stability, (oh hell, let’s just go for remission), but at least it’s not galloping. And, we now have a menu of options.

As my performance level is still very good, Alice would like to keep me on crizotinib until we know that it will receive FDA approval (for which it is currently being fast-tracked) that way, should other treatments fail, I have the option of returning to crizotinib (as it would seem to yet confer a partial response).

Once approval is certain, I would get in queue for a trial of Novartis’ LDK 378, the first second generation ALK inhibitor. LDK 378 is administered in tablet form, is a very selective inhibitor and exhibits five times the potency of crizotinib. In addition, a model of my mutation in the lab (from the cell line started with material from my last biopsy) was sensitive to this particular ALK inhibitor. So, it is very promising.

Another experimental drug from Novartis, AUY922, an HSP-90 inhibitor, remains an option as well, but would involve weekly infusions and possibly broader side effects. Although not specific to ALK mutations, my  secondary mutation model again showed sensitivity to this particular HSP-90 inhibitor in the lab.

So, on the one hand I am sad to be going down this path again, but I am also mindful of the fact that this time I have a compass, a map and Dr. Shaw by my side.

I will close today’s blog with some photos from an excursion I undertook last weekend with my friend Julia, to Strawberry Banke in Portsmouth NH. We had a wonderful time and I was much taken with one of the displays; an old home preserved in a marvelous state of decay. Just a reminder that there is beauty everywhere, every day, no matter what.

Back and forth

I haven’t quite gotten back to my regular blogging schedule yet…so now I’ve got to play some more catch-up.

The photo gallery has some bits and pieces from the past week and a half. Prior to my departure from Bethesda and Miss Sally’s fine company, the two of us made a quick stop at the local merry go round before touring Hillwood, the over the top home of Marjorie Merriweather Post. I left feeling refreshed and confident that my own acquisitiveness was indeed of the minor sort (who needs more than one Faberge egg?).

I bade a breathless farewell to Sal at the airport, as we’d been mightily delayed by traffic. I fretted through security and ran to my gate only to discover that my flight had been delayed. I made the best of the situation and enjoyed a Maryland crab cake (not quite as good as the one Brian brought, but almost…). And then a funny thing happened.

David was flying out to Austin that evening, and had a layover in
Baltimore. As it turned out, my departure was pushed back even further and I got to hang out with my my husband in the airport for an hour; a lovely surprise.

The fourth of July weekend was primarily devoted to housekeeping, as we did the final sweep of our previous home. It wasn’t only work though, as we enjoyed a cold summer picnic at Mary and Raleigh’s. On Monday we attended the annual Independence Day parade in Amherst. Clowns, kittens, antique cars, children from the village on decorated bikes, floats, jugglers, karate demonstrations and politicians…Mitt Romney and Jon Huntsmen were each in attendance shaking hands all around (though not ‘one of their people’, I shook em both). It was something.

After the parade we cooled off with a swim. The boys have decided that Buddy, our very hairy golden retriever, is not to be denied access to the pool. I am of two minds regarding this; but I must say our dog has never been cleaner. Or happier.

That evening a neighbor put on an impressive display of fireworks (legal in Hew Hampshire, the live free or die state), which the boys viewed from an adjacent pasture. Exhausted, I was content with the audio version and an occasional glimpse through the trees. Besides, the yard was alive with fireflies, and as much as I like fireworks (a lot), they don’t hold a candle to the magic of phosphorescence.

I had my two month scan on Wednesday, and Thursday night a wonderful long distance conversation with a friend from New Zealand, Sarah. She is a poet, (I will include one of her poems in an upcoming blog) a mother of three young children and a three year survivor of stage four lung cancer. Sarah was an early participant (before myself) in the crizotinib trial and I am inspired by both her bravery and her resilience (as well as the fact that her way with words is breathtaking).

Tonight David and I will attend a fundraiser for lung cancer at the home of Diane Legg and her husband. Diane is yet another amazing woman; more than six years out since her diagnosis she is the busy mother of three boys but also a relentless advocate who never misses an opportunity to raise awareness regarding our disease. Just one of my heroes.

So that brings us up to speed–on Tuesday I will get the results from the latest scan and perhaps a better understanding as to how my cancer is progressing. If my cough is any indication, I would say there has indeed been ‘progress’.  I’ll keep you posted…

Strong thoughts and positive energy please

My dear friend Guillermo has taken a turn for the worse. I know that many of you have  grown incredibly fond of this wonderful and magical man whom I refer to as my co-author (due to his lengthy and erudite comments). Please keep Guillermo and his family in your thoughts and send them our collective love and strength.