Monthly Archives: May 2010

All good, this one

The past few days have been just glorious. On Friday, I awakened to the sound of the wood thrush. Later, I took a little hike through the woods in search of Lady Slippers.  They have such a beautiful flower and are quite ephemeral:  soon they will be gone until next year.

That evening we attended a Chamber Concert at Sant Bani with the St. Petersburg String Quartet. Once again it was an extraordinarily intimate venue, affording the small audience a rare opportunity not only to hear but to see the emotion that goes into each piece. It was so much more than merely listening; we were invited to feel the music as well. Outside distractions melted away, and each of us was immersed in sound.

Saturday morning found Peter and I flying solo as David headed to Mattapoisett. Pete invited a friend over and in the early afternoon I took them to the lake. It is yet early in the season for swimming and the temperature of the water is icy cold, but the boys were determined. They played a game where they tossed  large stones into the water, a bit further each time, and then retrieved them. This activity got them in about thigh deep. Next up was a thrown stick, and that took them out to chest high water. They both (bravely) ducked all the way under before swimming back to shore.

As I watched them, I felt that I was seeing an echo or shadow of the man that Peter will grow into. His limbs have begun to really lengthen and his shoulders are broadening such that he is looking less like a child. It gave me rather a delicious shiver, as I hadn’t thought I’d see him reach adulthood. He’s not there yet though. Before we left the beach, the boys built a sand castle together; a charming and decidedly childlike activity. It is a beautiful and unselfconscious window of time in their lives as they just enter their teens.

After they dried off we went to a matinee of a movie for which they (and not me) were the target audience. For dinner we ordered out Thai food.

Early the next morning we were out on the deck with donuts and the funnies for the boys and coffee and the Sunday NY Times for me. Later, Peter and I took Buddy on a walk and then ran some errands together. David came home, I made tacos, had a glass (and a half) of wine, and then had a long phone conversation with a dear friend that I’d been out of touch with for far too long. As we spoke, it felt as if no time had passed at all and the magic of our friendship once again became an animated presence. It was really a perfect weekend.

Next steps

Where to start?  It’s been a busy week.  On Thursday I went to Boston for allergy testing. I sleep on a natural latex mattress and had been using a pillow out of the same material. Several mornings in a row I awakened with a lot of swelling around my eyes and cheeks. After spending the night at a friend’s home and waking up minus the swelling, I returned to my own bed only to have it happen again. I replaced the pillow with one that wasn’t latex and  voila, no more swelling. Because I am in and out of a hospital so much, there was a chance that I had developed an allergy to latex. A prick test (yes, that’s what they call it) came back negative and I am awaiting a blood test, but it seems unlikely that my facial edema was related to latex. A minor medical mystery.

On Saturday, we had a belated birthday party for Peter, who turned thirteen in April. Seven of his buddies spent twenty four hours at our house. The air was thick with adolescent testosterone. When they weren’t eating they were out in the woods using each other as target practice with a battery of air soft guns. They all had on protective gear and were instructed to not shoot each other in the face and/or point blank, and, for the most part, they complied.

The entire air soft concept took me awhile to warm to. Despite my own access to not only cap guns (remember the smell of a freshly detonated cap?) but twenty two rifles as a child, as an adult and a pacifist, I have a general policy against weapons of any sort. Not easily thwarted,  a then-three-year-old August would chew his toast into the shape of a gun. Gradually I acknowledged that an attraction to things that shoot was somewhat intrinsic, and rather than banning firearms, I did my best to stress respect for life while allowing for fantasy play. These new guns do take it to another level. However, the boys had a great time and we all survived.

Sunday afternoon we partook of a more gentile activity, as Peter had a music recital. It was lovely to listen to a wide range of ages and abilities on a variety of instruments, including Peter Duff on guitar.

I turned in early that night, exhausted from the boy party, a big boy party (remember Go Dog Go and “a dog party, a big dog party”; I cut my reading teeth on that book). Yesterday morning I left the house at six a.m. to follow that familiar path down the highway to Boston. All the trees are almost completely leafed out now, and everything is so green. There was also a lot of roadkill. I saw opossum, fisher cat, coyote, deer, as well as some mangled black fur of unknown origin. It is a sad rite of spring;  young animals unaware of the great danger that crossing a highway poses.

At my  appointment, Alice (Dr. Shaw) laid out my treatment options in more detail. My next scan is in three weeks, and will help us to assess how quickly the cancer is developing. At some point I will need to undergo another biopsy, in order to learn more about why I have become resistant to the 1066 as well as to determine what the most appropriate therapy might be. If the pleural effusion has gained in volume, some of the fluid could be removed and analyzed. The presence of the fluid makes it viable to remove ‘live’ cancerous cells that could then be cultured.  Clinically that would be a real advantage, but from a therapeutic perspective a pleural effusion can be difficult to manage, so I am hopeful that such a scenario is not an option.  In lieu of that, I would likely have a wedge resection via VATS, as a punch biopsy would not procure enough material.

As I mentioned before, a HSP-90 inhibitor might be the next logical step.  HSP-90 is an acronym for Heat Shock Protein 90.  In healthy cells, HSP-90 acts in part as a chaperone that shields proteins from destruction. In cancerous cells, a number of proteins can be over expressed and inhibition of HSP-90 may induce apoptosis (cell death) through inhibition of growth signaling pathways. A phase II trial for HSP-90 is now enrolling patients with ALK mutations at MGH.

Alimta remains a fallback possibility and we will be keeping our eyes on a couple of ALK inhibitors in the pipeline (in addition to Ariad, Novartis has one in development).  My fingers are crossed.

In a couple of weeks, ASCO will have it’s annual meeting and this year the PF-02341066 trial results will be presented in a plenary session.  I am interested in seeing the newly published data, including the actual number of participants who, like myself, have relapsed.  I am also happy that the resulting exposure and publicity will make so many more oncologists and patients aware that people with NSCLC should be tested for mutations. It really is the dawning of a new era in cancer treatment.

Finding my footing

This image is from a photo taken by Elliott Erwitt in 1963.  I find it gently amusing as well as totally apropos:  I’m feeling a bit lost. I had spent the last eighteen months as a poster child for the miracles of modern medicine. The idea for my blog was a logical segue:  perhaps I could use my own good fortune to encourage others to have their cancers tested for mutations, and more importantly, to be hopeful. It has been a role I’ve embraced, and in the process I have discovered my inner cheerleader. I’ve even felt a little personally pumped up–maybe this is what it was like to be not just a bench warmer (story of my youth) but rather a bit of a star (damn, I’m good at cancer!)

Well now.  Seems I’ve misplaced a bit of my mojo. Unfettered joy has become guarded optimism. I’m still adjusting. The evening before the race in Providence there was a spaghetti dinner and I had been asked to speak. I was precluded as well as introduced by the ever wise and gracious Dr. Alice Shaw. When it was my moment behind the podium, I looked out at all those faces and really didn’t know what to say. I kind of felt like the bad news at the good news party. I came away with the realization that I need to refine my schtick in a way that both embraces realism and hopefulness, because frankly, I’m not comfortable with any other approach.

So here goes. I have advanced, stage IV, or terminal lung cancer.  They all mean the same thing. By definition, I have a very serious illness. That is not, however, how I view myself. Just the other day, at a routine colonoscopy in honor of my fiftieth birthday, I filled out a questionnaire in regard to my health.  As I was about to pencil in the circle next to very good, I reconsidered and marked good. Aside from the lung cancer, I really do have excellent health. I certainly don’t look like a sick person.  That is due in large part to the fact that my lung cancer, although not curable, is currently being managed. Even now, as the cancer becomes resistant, the amount of disease in my lungs is considerably less than it was prior to starting the clinical trial for the targeted therapy that brought me back to this state of health. At it’s apex, I had perhaps a 72% resolution of disease. Now, that  number is more like 67 and 3/4%. In the annals of cancer treatment, yet very impressive.

Perhaps I represent what advanced but managed lung cancer can look and feel like.  As I get in line for another miracle, it’s not so very different from running a marathon. I’m prepared both physically and mentally to go the distance, but when it gets tough, when I’m tempted to quit, I will think of all of those ahead of and behind me on this course and I will hear the shouts of encouragement from the sidelines. I will know that I’m not alone, and I will keep going.  Because just over the finish line is the prize I so covet. Life, sweet life; another morning.

Team Lung Love

The first Team Lung Love was a huge success.  The event was the brainchild of Julia Gaynor, a wee dynamo who is passionate about lung cancer (she lost her beloved mom to the disease a little over two years ago) and running.  There were thirty nine people who crossed the finish line and twenty or so volunteers. Almost $55,000 was raised for the Lung Cancer Alliance (Team Lung Love is still accepting donations), over $4000 of that amount raised by David and more than $8000 by my sister Laura.  I am so proud of them both, and of Peter too:  he ran the first five miles of the race, doubled back for his dad, walked/ran the next eight miles and booked it for the last stretch.  Not bad for his first half marathon.

My sister Laura and friend Stacy

Jim, Karen, (a survivor) and Linda

Those who ran and walked had all been personally touched by lung cancer (including a large and speedy group of young nurses from MGH) and three of the participants in the half marathon were actually survivors (Diane, Karen, Judith, you are amazing!).  It was a splendid gathering of passionate, caring people putting one foot in front of the other to make a difference. I am hopeful that next year I can participate in the race, although I was content to fill the role of spectator/cheerleader this go around. I’m certain Julia and the Lung Cancer Alliance will grow this concept into bigger teams and other venues, so look for more Team Lung Love.

Moving on

Last week I got an email from an editor at the New York Times telling me that the photo I had sent in for their online interactive collage would be in a feature in the Science Section of Tuesday’s paper.  Kind of fun.

Wednesday morning we left for the south shore of Massachusetts. For the past several days our home away from home has been our little Airstream Trailer.  Meema (David’s mom) is in the midst of chemo for non-Hodgkin’s lymphoma and we’ve been preparing some meals for her. David has also been making arrangements for the sale of her former home, which has been in the family since 1902. I have had fun wandering around taking photos of the now rather deserted interior (vaguely reminiscent of Grey Gardens, minus the raccoons).

Tomorrow we head to Providence, Rhode Island, where we will join my sister Laura and her friend Stephanie.  In the evening we will have a spaghetti dinner with the members of Team Lung Love, and on Sunday morning I will be on the sideline cheering on Peter, David, Laura, Stephanie, Julia and assorted others in the Cox Rhode Race.  I’ll be wearing my new bright white tennies, and I hope to walk part of the way with them.  Go Team Lung Love!