Monthly Archives: April 2012

Out of Office

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Marfa Time! It is Peter’s spring break and we’ve decamped to Texas, where temperatures have been in the high nineties and rain is a distant memory. First, some chores: mopping floors and wiping down dust. Then, a reward for all our hard work; a splendid meal out at Cochineal. It is definitely the celebrity hotspot in town, and we noticed Feist, who was performing the following evening at the Crowley Theatre. Sadly, it was a sold out show and the Duffs were not in attendance.

Day two we really settled in. David changed the battery in his old Chevy truck, Pete got a buzz cut, and I took down and washed all the curtains. I finally entered vacation mode and have been riding my bike around town taking photos;  the first installment is above.

Happy Day!

Fifteen years ago today I gave birth to a 10 lb 4 oz baby boy; our youngest, Peter Albion Duff. It was not an easy birth, for mother or child. His older sister and brother had each weighed a mere 6 pounds and some change, and I’d been able to employ lamaze breathing techniques for drug free, natural deliveries. I really tried to follow suit with Pete’s birth, but after far too many hours of labor, the attending physician suggested an epidural. The anesthesiologist, named Dr. Zipper (really), instantly became my favorite person of all time. Half an hour later, Peter emerged, or rather, was yanked free, to a chorus of “oh my god, he’s huge!” Aside from a temporarily misshapen head (which measured an astounding 15 and 1/2 inches in circumference), Pete was perfect. And I recovered.

Precious Pete

Seven years ago, on Pete’s eighth birthday, I was in house at MGH following a lobectomy. When his dad brought him to visit me in the hospital, Peter crawled into my bed and just sort of made these small animal sounds. It broke my heart, but also reinforced the fact that not surviving wasn’t an option. Our Christmas card that year was a photo of David, Peter and myself at the beach. I am about two months post chemo and we all have the same haircut.

So, another milestone. Pete is excited that he is six months away from qualifying for a learner’s permit to drive (oy vey). I am thrilled just to be present; to have the chance to witness my (big) little boy well on the way to becoming the wonderful grown-up he will become.

Happy, happy birthday!

Meanderings

And this is how they do it

Yesterday I was in Longmeadow, MA for a quick visit with our friends Melinda and Kihan. Mel and I were out tooling around, and she spotted the Google Maps Street View car on an adjacent avenue. We then spent ten frantic minutes driving around trying to find it again (because, why not) and just when we’d given up, we did. So, naturally, we pulled in behind the vehicle and snapped a bunch of photos like some deranged middle aged groupies. All in good fun.

After lunch today, I was back on the road home again and passed a massDOT (Massachusetts Department of Transportation) vehicle with a panoramic video camera mounted on the roof. It seemed a funny coincidence witnessing two ‘road crews’ within twenty-four hours. Also, as it so happens, I have somewhat of a personal connection to Department of Transportation  highway footage.

It was 1984, and I worked at a company in Denver that did post production of motion pictures. I was employed in Inspection, and one of our tasks was to view all the film before it was shipped out. When I took the job I imagined myself sitting alone in a darkened theatre, watching full length features. In reality, we watched soundless footage on small monitors at high speed, and often it was upside down or backwards. One of our biggest clients was the Colorado Department of Transportation. They filmed highways all around the state in order to assess their condition. I viewed countless reels of roads, careening down them at high speed and often without regard to gravity.

Before packaging, we diced and spliced each reel of film and then ‘washed’ it in vats of trichloroethylene, an industrial solvent and degreaser which, interestingly enough, was first developed as an anesthetic. However, it is now recognized by the EPA as a human carcinogen, associated primarily with kidney cancer.

Fortunately, I held this job for a mere four months. I believe it is worth noting that the exposure I experienced was acute; we wore neither gloves nor respiratory masks (they were available, but the individuals who trained me told me not to bother and I didn’t). Four or five times a day I would enter a small, poorly ventilated room and immerse my arms up to the elbows in trichloroethylene. The smell was so strong I could taste it and the skin on my hands would turn cold upon contact with the solvent.

Although casual about any risk to my own health (I was 24–invincible!), I became pregnant with my first child while employed there. As I neared the end of the first trimester, I began to feel uneasy and placed a call to OSHA. There was actually not a lot of information (or, clearly, regulation) in regard to trichloroethylene then, but there was an association between the solvent and liver toxicity. No longer complacent about the safety of my workplace, I gave my two weeks notice. Six months later my daughter was born–seemingly unscathed.

There is no data linking trichloroethylene to lung cancer and my own exposure precluded my diagnosis by many years. This rambling tale (from two cars with cameras to carcinogens) may be totally irrelevant. However, I have long felt that the anecdotal data that patients can provide might lead to a greater understanding of why those of us without clearly identified risk factors (smoking, radon exposure) get lung cancer. So, I’ll throw it out there.

And just a BTW/FYI:  I have written a guest post for the Stanford blog of medicine about clinical trial participation. For those who are not yet exhausted, a link:  http://scopeblog.stanford.edu/2012/04/clinical-trials-my-next-good-chance/

Self Portrait

Little head, long legs...must be me.

This is what we call a cheap shot. On Sunday we took Peter to a reunion for the MIT chapter of Camp Kesem and the grown-ups had some time to roam the halls. In case it is not readily apparent, I snapped the picture in the ladies room. I am using it to illustrate the fact that I am ‘stalling’…(so, so bad, but please just roll with it). Real content of substance shall follow shortly.

Yours,

Linnea

Sprung!

Fiddleheads

Fiddleheads

Looking like a character from Dr. Seuss

Looking like a character from Dr. Seuss

Exhibit A (ALK+)

By last weekend my GI tract had returned to what now passes for normal, and I was ready to get back in the game. Pete shipped up north for a dance at his former school and then on to a friend’s house, and Melinda and Kihan joined us for the grown-up version of a sleepover. At dinner my companions went through several bottles of fine wine; I teetotaled.  On Easter Sunday we scooped up Peter and the five of us went to brunch. Aside from that repast and the giant Easter Basket Melinda assembled for Pete, the holiday would have come and gone without much fanfare. End of an era it would seem; no more egg dyeing, stuffing (the plastic kind) and stashing for the hunt. Should any of our progeny produce grandkids, perhaps we will revisit these activities.

Monday I drove to Boston for my scan review, and was able to grab some time with my friend Ginger beforehand. It is always lovely to see her, and we must do it more often!

At the appointment, Alice (Dr.Shaw) showed me the most recent scans side by side with the ones from February. Overall, there is no significant increase in size of nodules, and the activity in my right lung remains remarkably stable. Unfortunately, what remains of my left lung, the scene of the original crime, is a bit of a trouble maker. The radiologist who read these scans is very thorough, and the report is lengthy and replete with detail. To wit (not even the complete report):

“There is a mixed solid ground glass opacity in the peripheral left upper lobe beginning on image number 60 extending through image number 67. This is increased in density when compared to the prior examination. …there is mild increase in ground glass opacity in the lingula adjacent to the pericardium in images 71 and 72. There is a region of increased ground glass opacity in image number 76…there is some increase in ground glass opacity adjacent to the left ventricle on image number 91 and 95…when comparing to the examination of November 2011, the mixed attenuation lesion in image number 65 is increased in size and density. The ground glass opacity in the inferior lingula has also increased.”

Lotta lotta ground glass being tossed around. However, the final impression is:  “These findings may represent mild increase in minimally invasive adenocarcinoma in these regions”. Minimally invasive adenocarcinoma is the new term for BAC, or broncioaveolar carcinoma. I have some quarrels with this change in nomenclature, but that is for another blog.

At any rate, the areas of greater consolidation mean that I am no longer stable. However, particularly viewing the scans, which didn’t look that bad, I feel it was yet a good report. Aside from my three week respite with the hepatotoxicity, I have been on LDK since September 7th, 2011, and I believe I’m going to get a lot more mileage out of this particular therapy.

Tuesday I returned to Boston for a double header of sorts. I finally had the opportunity to meet my friend Craig, who is ROS1 positive and on trial at MGH as well. Craig has written a great deal about his own experience on Inspire, the online support group we both belong to, and at my urging, he will soon do some guest blogs here as well.

Following his appointment, Craig joined me for the opening ceremony of the Paul S. Russell Museum of Medical History and Innovation at Massachusetts General Hospital. Doctor Russell and Boston’s own Mayor Menino cut the ceremonial ribbon (actually high tech gauze), after selecting their tools of choice from an array of surgical implements borrowed from the museum’s collection.

My claim to pride of place at the ceremony was due to the fact that some video footage of myself and three other individuals–one of whom is my friend Greg, appears in an exhibit showcasing the use of targeted therapies at MGH. And now, for my best ‘I’m part of a museum exhibit’ smile:

If you are interested (my moms never get tired of this stuff), here is a link to some related content as well as the original video.

Seven

Seven years ago today, on a Thursday morning, I became a person with lung cancer.

For some reason, it is the moments leading up to the diagnosis that I recall most clearly. I’d been in the hospital for three days already, and my doctor at the time was stopping by before her regular appointments to discuss the biopsy results. We were waiting for my husband David, who was expected to join us but was running late. My doctor filled the awkward silence by describing either a story her daughter had written or a play she’d had a role in; I no longer remember which. The doctor talked at some length about a field of sunflowers, which was in some way central to the story or the play. “Sunflowers signify hope” she said.

I had spent the past fews day convincing myself that the mass in my lungs couldn’t possibly be lung cancer. I was only forty five, fit and had never smoked. People like me didn’t get lung cancer. So it never occurred to me that she was telling this story, not just to occupy time, but for my benefit. A blazing field of sunflowers would be the final image in my mind before the shock, fear and grief hit; the last thing I would recall before the world turned upside down was a symbol of hope.

It is a strange thing to commemorate; the day of diagnosis. But of course, what we are actually noting is our continued survival. Seven and counting.