lunhs cancer

My friend and fellow stage IV lung cancer fighter Jessica Rice has had a very rough road throughout her treatment. She is two years into this journey and has been through numerous chemo cocktails, Xalkori, a clinical trial, CyberKnife, and whole brain radiation. When I found out I had lung cancer, I was desperate to find other young people dealing with this terrible disease. When I came across her blog, I read it from start to finish. I look up to her as a sort of expert who has already tread the path that I am on, someone who can be a beacon in these unknown waters. I was looking through her " Frog List " (things to do before she croaks) and I noticed that one of her dreams is to see a Cirque show. Suddenly, I had an idea for how I could try to pay back some of what she has offered me. I contacted the three people I know who have worked with Cirque du Soleil and, being the lovely people that they are, they all replied promptly with thoughts on how to help my friend. Much ...

I am taking a break from talking about lung cancer to write a post in honor of my amazing daughters. These little fighters came into the world at 32 weeks, after several almost-deliveries (and almost-miscarriages) in the preceding few months. Mikaela pulled the ejection cord, as Jason likes to put it, and they were delivered by emergency c-section (like, SUPER emergency c-section) on March 8, 2011. I had been in the hospital on bed rest since 28 weeks because of placenta previa . I am very thankful that I was in the hospital that night, since I had a massive bleed and the doctors got me from my room, into the surgery suite, and got both girls out in under 10 minutes . Man, I just can't do anything the easy way, can I? The girls spent the next 4 weeks in the NICU, hooked up to tubes and monitors. I remember looking at their tiny arms and wondering how in the world the nurses got an IV into those veins. To this day, when I am getting poked (often repeatedly) to put in an IV, I think ...

I've been rather giddy about my ROS1 mutation news. When I met with my oncologist on Tuesday, she told me that I am the first person at the University of Michigan Cancer Center EVER to test positive for ROS1. She said the technician ran out into the hall screaming when he got the results. The tumor board couldn't stop talking about it. "We finally got a ROS1!" How cool, I'm Patient #1. My oncologist wrote my prescription for Xalkori (the brand name for crizotinib), then paused as she handed it to me: We may run into some problems, because this is considered off-label for ROS1. Urg, I didn't even think of that. Because the ROS1 group is so small (only about 30 cases), there have been no clinical trials specifically for us. We have tagged along with the ALK mutation trials because, thankfully, the mutations are similar enough that their targeted drugs also work for us. But technically, there are no drugs approved specifically for ROS1. My oncologist assured me t...

This belief has driven how I respond to stressful situations throughout my life. When I was pregnant with our first child, I took every class I could find, read lots of books, and watched many hours of birth videos (thanks to my midwife sister). I learned and got ready. When I found out we were having twins, I read books and asked questions of every twin I knew. As the pregnancy progressed and took a complicated turn, we were told that the girls would likely be born severely premature and if they survived they would face a lifetime of challenges. In response, I started reading about raising children with special needs. I subscribed to blogs written by some amazing families with special children. I got prepared. When I was diagnosed with lung cancer, I dove into the research and tried to learn everything I could about this disease. Actually, that is not quite true. For the first few weeks I actively avoided reading anything about it. I knew enough to understand how dire it was. I couldn...