Saturday, August 21, 2010

Der Mut: Courage Heart Spirit... Braveness... Grit

Hi all,

It's been a while since our last blog, almost a month, and a lot has happened since then (feels like much more than a month!). I'll try to hit the highlights and get everyone up to date on a long month.

Since the fundraiser Andy and Jen have been focused on packing up for the move East. During this time, Andy's back has been getting stronger - he's spending more and more time out of the back brace. Thank you to everyone who helped pack, visited before they left and helped keep Nicholas entertained - it was a big effort in a short period and could not have been done were it not for everyone kicking in.

Andy flew back this past Tuesday on the red eye with the dog and cat. The movers came to their house on Tuesday and Jen coordinated the loading and then flew East on Wednesday with Nicholas. Being here will put him closer to the doctors and support network at Dana Farber, and also let Mom, Dad and I, as well as friends, help and provide support. It's a big change for all of us, not one that was planned but one that is necessary to continue this fight. Another adventure.

Andy and I were interviewed on WEEI (Boston AM 850) as part of the NESN/WEEI Jimmy Fund RadioTelethon. We walked into Fenway, and everyone greeted us as "the Swan brothers" - I guess we're getting known at DFCI after the swim last month.

The interview was simulcast on NESN - but funny enough, our interview was preempted by a call from some actor on Glee and a call in from Senator Brown, so by the time our interview slot came up, they had to go to the top of the hour commercials on TV.


It took a lot of effort on Andy's part to do this, we had to be up early after little sleep the night before and had a full day of tests and meetings at Dana Farber to follow. Its great to have a chance to give back, to talk about this journey, to advocate for lung cancer research, for supporting Dana Farber and to have a chance to publicly thank the friends and family who have been our rocks throughout 2010. I firmly believe that every dollar raised for research has an impact - years ago someone donated, and that donation seeded a researcher's idea, and that idea became the drug that Andy and countless others now take to fight off cancer. Every little bit helps.

After the interview we headed to Dana Farber for testing and appointments. Jen met us there, we ran through the usual events (blood work, vitals, and a CT scan with contrast). The folks at DFCI were nice enough to set us up with a cot in the radiology department so Andy could sleep while waiting for the contrast to cycle through his body.

Andy's results came back with less than optimal results. While the Tarceva is working on some tumors, other tumors have grown and remain unchecked. This is disappointing, and was not expected by the doctors. Most EGFR+ patients react well to the Tarceva, some do not, but it is unusual to have a patient who is partially reacting. The upshot is that there is something else going on with his cancer, and additional research is required to understand what that is and how to treat it effectively.

Andy will continue on the targeted therapeutic as it is fighting some of the cancer, and will supplement the treatments with a new chemo regimen. Andy will start Alimta next Friday and receive chemo every three weeks. It is our hope that the combination of the two treatments will beat back the cancer, slow it down while more testing is done on his biopsied tissue, to get a better idea of how best to knock this down. We'll get a CT scan after six weeks to gauge the effectiveness of this treatment regimen.

This was hard to hear for all of us, difficult to call and tell my parents - its the kind of news that sucks the breath out of your lungs. Its not what we hoped for but it is what we have to work with.

After the appointment we headed back to Somerville to let Andy rest, and then Andy, Jen, Ann and I attended part of the Red Sox game as guests of the Jimmy Fund. It was awesome to be there together in the stands. The Sox lost but it was a great night for a game and we had a wonderful time.


Der Mut. Most of you know that Andy has this tattooed on his left arm. Der Mut is German, roughly translated as "the courage, heart, spirit, braveness, grit". Andy had the words tattooed back when he was relatively new in LA trying to make it in the film industry, to remind himself of the tenacity required to be successful. He had it augmented in December, before we knew he was sick; ironically, it is so relevant now and has been throughout his fight this year. So much so that I followed his lead and also had it tattooed on my right arm, to show support for him and let him know that while the fight is personal, he will never stand alone.


I tend to see it on my arm and think of it as "Tenacity in the face of Adversity". As I mentioned, this is not what we hoped for. But we don't stand alone, we have hundreds of friends and family rooting Andy on, and are backed by the very best doctors and researchers at Dana Farber. We will beat this one way or another.

As I mentioned, it has been a busy month for Andy and the family. The other event that we have been quietly dealing with is the recurrence of our Dad's cancer. We found in July that he has some small lesions on his bones, and also got a scare when his CT scan showed innumerable submillimeter nodules in his lungs. Long story short, we have been to just about every leading cancer hospital in the Boston area to get a good plan for his treatment. We received a lot of advice, and have attended consults and reviews at Beth Israel, Brigham & Women's, MetroWest Medical, Mass General... and Dad is now also a patient at Dana Farber. Given his history and how well DFCI has taken care of Andy it is the right place to be.

Dad has had a bunch of tests run, the latest seem to indicate that while we need to treat the bone metastases, we can wait on the lung nodules as they appear not to be cancerous, based on all the recent tests. Dad will start treatment on Friday as well at DFCI, and then, like Andy, will have a CT scan in six weeks to see how the treatment is working.

I don't know what else to say. We are hopeful, we remain strong and we are grateful to have time as a family together. We head out on a vacation to Lake George after the treatments next week. It will be wonderful being there together with friends and loved ones, and will allow us to sit back and catch our collective breath and rest up for the fight.