Hello, I'm NED!

Today's foot attire.

That's right friends! Ten months after being diagnosed with Stage IV metastatic lung cancer, nine months after having emergency heart surgery for a pericardial effusion caused by the cancer, and four months after being told I would need whole brain radiation to treat multiple tumors in my noggin, my most recent scans show NO EVIDENCE OF DISEASE. I have had a COMPLETE RESPONSE to LORLATINIB, a drug I have accessed through a clinical trial with Dr. Alice Shaw at Massachusetts General Hospital. So I'm not going to die of lung cancer any time soon. In fact, if I have a durable response (i.e. one that lasts years), something else might even get me first! In the meantime, I'm going to walk around alive and well and incredibly grateful for good science, a loving family, amazing friends, and all those who have put my name in their prayers, including some folks  I've never even met. All those things together have wrought this miracle, and I bow before them.

Even though it's a horrible thing to have cancer, and even though I had an awful setback in treatment in May, and even though I'll likely be having to treat this disease for the rest of my life, so many other things have gone right that I feel incredibly fortunate most of the time. Through a happy chain of events, I found myself in touch with the right people who had the right information at the right time to help me get access to this trial. I had the indispensable help of the ROS1ders, especially Patty, who was the first person with lung cancer to tell me I could survive it, and who is always just a phone call away. And in the couple of days back in May when I was having to make hard decisions about treatment, two of my best friends, Claudia and Rebel, swooped in to cheer me on. They urged me to pursue the trial and helped me gather and send off all the clinical records I needed to be considered for it, which involved some serious running around to multiple clinics in midtown Nashville on a hot day. It's great having your own personal cheering squad when you're terrified. Once I got to Boston, my sister Michele and two of my nieces met me and my husband John there, schlepping over on a long drive from New York after just having a long trip home from visiting me in Nashville! Another cheering squad to the rescue as John and I waited to learn if I could get in the trial. I did qualify, and that has meant monthly trips from Nashville to Boston, so again, I have been fortunate to have the resources and to have been given some generous gifts to fund my travel to Boston to follow the protocol. Not all cancer patients who could benefit from trials can get access because the sites are often far away and the cost of travel prohibitive.

So, science yes, but grace too.

And unconditional love and support from my husband John and stepdaughter Rachel for my decisions. Their good spirits, patience, generosity, and love have sustained me. Being a caregiver to someone with cancer is never easy, especially when that someone is ornery me.

What does all this mean for my prognosis? Well, I still actually have cancer. But now, we're treating it more like a chronic illness instead of a soon-to-be fatal one. Those of us in the lung cancer community know, though, that things can turn ugly quite suddenly, and no matter what the treatment plan is, we're always thinking about what could happen with the next set of scans. I'll keep taking lorlatinib for as long as it keeps the cancer pinned to the mat. If the disease gets a second wind and rises up, well, it just so happens I have a hook-up with a rock star cancer researcher in Boston who studies the disease's mechanisms of resistance to treatment, and she will, by then, have discovered more about what to do next. Those discoveries will benefit not just me, but so many others who have lung and other cancers that need to be treated at the molecular level. That, my friends, is why we have to keep pushing to make more funding available for lung cancer research. And one of these days, I'll quit pestering you for donations, because all those dollars you'll have contributed will have added up to a cure!