Monthly Archives: April 2011

What’s up? Everything.

Yesterday, when I began this post, I was looking out the window at a sudden snow squall. It’s the final week of April. Will winter never end?

There are subtle signs. In the past week I’ve seen a snake, a butterfly and a cardinal. The forsythia is ready (but waiting) to burst forth. Today I walked past some freshly spread mulch; it certainly smelled like spring.

Sigh. It is not as if I’ve had much time for frolicking even had the weather been beckoning. In two days I travel to Colorado for a brief visit with family and then I will attend the National Lung Cancer Partnership 2011 Lung Cancer Advocacy Summit (what a mouthful!). Before I return, David will have begun moving boxes into our new home.

Last week my sister Bink was here for a visit. We had a wonderful dinner at Mary and Raleigh’s one night and attended a housewarming party at my friend Michael’s as well. Michael is a sculptor, and he had all sorts of new work up, including the bubble wrap squid in one of the photos above.

I took Bink to our own house-to-be, and she made some measurements for a future renovation (Binky is a very talented designer).  She never ever goes ‘shopping’, so we did a bit of that as well. She bought us the little tin and iron bird (above) as a housewarming gift. It was sure great to hang with one of my siblings.

It’s been a busy time for Pete, who found out a little over a week ago that he was accepted to the Academy for Science and Design (woohoo). His proud sister bought him a Kindle in celebration. On Wednesday he turned fourteen and was the recipient of some really cool clothes from assorted aunts and uncles and godmothers, checks from grandparents (he’s saving for his first car already) and a cell phone from his parents. I prepared his favorite meal for dinner (sirloin tips) and a film at the cinema was postponed until the following evening due to a heavy load of homework.

I had my appointment at MGH on Tuesday and Alice (Dr. Shaw) and I talked about my mutation and treatment options in greater detail. More about that in a day or two, when I write a real meat and potatoes post (read:  I try to break down the science in a way I can understand).

Speaking of science, that was my husband’s field of study. He is  currently working in the next room. In the midst of all the activity, I have had a difficult time focusing on blogs. A  few minutes ago I told him that I now realized that my relationship to a task was such, that although I had a lot of trouble getting started, once I did, everything was hunky dory.

His response: “I know. You have a very, very, high activation energy barrier.” Well now. Glad we got that figured out.

Speaking of, the sun is actually shining which gives at least the illusion of warmth (as well as raising my spirits), so I think I’ll get motivated for a walk. Once I get started, it’s all good.

The birds are back

A week ago I noticed the robins. In the days since: a bard owl, vultures, pheobes, juncos, flickers, wild turkey, and red wing blackbirds. With the return of the migratory birds, spring can’t be far behind.

The glacier that was once our backyard is slowly receding as well. It has been raining and the season’s first thunderstorm was followed by a bit of hail. As I traipse through the woods  the earth is boggy beneath my feet.

What I really long for is sunshine. Not only has the weather been gloomy as of late, so have I. It is not a state of mind that I find acceptable for very long.

This past weekend I spoke briefly at a conference for cancer survivors. There was a question and answer period and someone wondered how I deal with depression. I explained that the first thing I see when I wake is the framed word Gift; a reminder that each day is precious.

Of course, that awareness isn’t always enough. When my kids were younger and in a state of distress, I found distraction and diversion to be the best tactics. That is, unless I too was at wits end, in which case my response might be far less constructive.

A simple change of scenery can nudge me out of a funk sometimes as well.  Perhaps a few minutes laying on the floor with Buddy (dog pile), going out into the woods with my camera, trolling at a thrift store or immersing myself in a good book.

I just read The Diving Bell and the Butterfly. It is an autobiography by Jean-Dominique Bauby, who was the editor of French Elle. At the age of 44 he suffered a major stroke, during which he was deprived of almost all bodily function, a state referred to as locked in syndrome. It is a slim volume, which Bauby dictated by blinking his eye to indicate each letter; an unbelievably painstaking process.

Situational diversion was no longer an option for him, and he recreated his own world within his head. His recounting is simply amazing.

For me as well,  distraction is occasionally cerebral. Recently my oldest son, August, was in the midst of a personal crisis. Although we spoke often on the phone, I really wanted to actually be there for him. As I lay in bed at night, I replayed memories from the moment of his birth, as if by doing so I could hold him close.

When feeling sad, sometimes it is forgetfulness that I seek. That is, of course, only a temporary solution. Ultimately I must return to mindfulness, and embrace the here and now. Even when it hurts.

Sixth anniversary

Six years this week, y’all. It was on April 5th, 2005, that a chest CT scan hinted that my unresolved pneumonia might in fact be a neoplasm. I didn’t actually know what a neoplasm was, and I certainly didn’t think there was even a remote possibility that as a nonsmoker I was a candidate for lung cancer.

Several days later a needle biopsy provided confirmation and I heard the unthinkable words “you have cancer”.

The rest is not quite history.

As someone who has never been NED (No Evidence of Disease), I would once again like to propose another acronym: NDY, or Not Dead Yet. There is, in my opinion, far too much emphasis placed on cure, life after cancer, and being a survivor. Many of us will never be able to speak of our cancer in the past tense, as we are instead been there, doing that.

Just as  cancer has invaded our bloodstream, it is also integrated into our daily lives. We are living with cancer.

Another way of looking  at it:  every day we do something death defying simply by surviving.

Six surprising, at times difficult, but absolutely wondrous years. And counting.

Rabbit rabbit

On the first day of the month, my husband will often repeat the words rabbit rabbit; as he did on Friday. There is an old superstition that doing so on the first of the month is good luck. It also happened to be April Fools’ Day and a snow day (no school). Nature’s little joke.

On Thursday Alice (Dr. Shaw) called me with some news. Several months ago I had a needle biopsy to try to determine why I was developing resistance to crizotinib. Alice thought it likely that there would be evidence of a further mutation. However, the report came back negative. She recently ordered another test on the sample and on this go around it was positive for a mutation (which could have been missed the first time due to dilution of the tumor sample by the presence of normal cells or inflammation).

So I am a mutant mutant. The ALK mutation remains and continues to be responsive to the crizotinb, however the new mutation is characterized by unresponsiveness. As of now, it is a unique mutation (for the moment, it’s all mine) and though the researchers have pinpointed the location, it doesn’t yet have a moniker.

So what does this mean?

Basically, although initially stopped in its tracks, the cancer found a way around crizotinib. Imagine water dammed by a mortared stone wall. Should a crack develop, water will first leak and then eventually rush through the hole. Crizotinib was, for a time, a perfect patch. However, the cancer, much like water would, continued to apply pressure to the resistance; in effect, searching for the path of least resistance. Eventually a secondary mutation developed, the  wall was breached, and the cancer no longer completely contained.

It would be tempting to imagine cancer as somehow sentient in the face of such terrifying persistence. In reality, the fact that cancer operates on a cellular level confers what seems to be an unfair advantage.

Luckily, my very sentient oncologist is also quite persistent. Click here for a link to a recently published paper on EMLK-4 ALK that Dr. Shaw co-authored. Oh–the image of the lungs contained within the paper belongs to yours truly (c’est moi).

So is it a good thing or a bad thing to be a mutant mutant? I suppose one con is that my cancer might be characterized as more aggressive, given that it has already mutated. On the other hand, the original mutation responded dramatically to crizotinib. Had no further mutation been found, the next line of treatment likely would have been Alimta (a non-targeted therapy) in conjunction with crizotinib. Now there is a distinct possibility that an HSP-90 or new generation ALK inhibitor  will be added to my existing regimen. There will once again be a specific target (or, rather, two targets).

Target target.