Caroline's Breast Cancer Blog

     Well...we did it again.  Wynn and I took another great trip, this time to Japan with Nathan and Nina.  Not since 2012, when the four of us went to Ecuador and Peru, have we been able to travel together.        This was an important trip for me. Besides my mother and sister, who live in the U.S., the rest of my relatives all live in Japan.  Although several family members have visited us in the past few years, I had not been to Japan since 2006.  In 2000, our big millennium family trip was to Japan.  Wynn, Nathan and Nina had not been back since then. With work and school obligations, Nathan and Nina could only come for the first week.  Wynn and I stayed several more days.  It was an important trip because I didn't think I'd get another chance to visit Japan because of my cancer diagnosis.  Tokyo Police Station's Lost and Found      After landing at Narita Airport, we spent ...

     In the past, you've heard me blabbing about how grateful I am for cancer researchers who, not only discovered the ROS1 tumor mutation that is causing my cancer, but who also found a drug, a pill, that manages to work around the mutation allowing the gene to function properly. Thus my tumors shrank and have remained stable for over 30 months.        I recently realized that I've barely mentioned my LC community.  This group is made up of other lung cancer patients, the people that love us, and in some cases, our doctors.  I'm connected to them through the internet by way of several online resources: CancerGRACE.org, Inspire.com, and SmartPatients.com.  Additionally, I'm Facebook friends with many, and am in a couple FaceBook groups.  One of my FaceBook groups is 'closed', open to only ROS1 mutation patients and our caregivers.  I've met some of my friends in person at lung cancer meetings, but most I have not...

     Since the beginning, and for about two years, I had my blood drawn every month to check the level of my tumor markers.  Tumor markers  give me an indirect indication about the activity of my tumors...low   levels indicate low or no growth, while elevated and/or rising values raise the concern that my tumors are growing. Additionally, every three months, I had CT scans to visualize my tumors and assess if they were growing, shrinking, or staying the same, (aka "being stable".)        I've always been bothered by having too many CT scans.  Certainly, it has been reassuring to know that each time I've had scans, so far, I've been told that my tumors are either shrinking, or are stable.  However, CT scans expose me to radiation, and although I've read that the increased risk of radiation induced fatal cancer is low, I never want to increase MY risk for more cancer...I already have plenty. Last year I negotiated with ...

It's been a while since I've blogged and that's a good thing.  My health, (both the cancer thing and my knee injury,) has been good so I've been busy taking advantage of the nice weather we've been enjoying in the Chicago area.  We've traveled some, making it to weddings and a weekend get-away to the eastern shores of Lake Michigan.  Although our summer fun isn't over yet, here are some recent photos... In late-May, we went to Omaha for Emma and Andrew's wedding.  The special wedding guest was 'Smokin', Emma's family's pet turkey.  Oddly, as far as pets go, he's a pretty cool one.  It was nice he put a bowtie on for the ceremony.   These are Emma's parents, Roger and Denise.  Denise and I have been friends since grade school.  Sloan, me, Mike, Dale and Dan Long time friends from Omaha met for dinner.  We forgot to take a photo earlier in the evening when everyone was there, but here are the last few.  Thanks to Tom, Terri, Mark,...

     Each year, around this time, the American Society of Clinical Oncology, (aka ASCO,) holds their annual meeting.  It is at this conference that great minds in clinical oncology bring the latest data and information they have gathered from their research and present it to other oncology care providers, and the rest of the world.  I don't know if it's always held in Chicago, but last year, this year and next year, have been, and will be, in our Windy City. The 2015 conference was May 29th-June 2nd.       Although I knew about the 2014 ASCO meeting last year, I didn't know that non-providers or non-clinical researchers could attend.  A few lung cancer ninjas that I know went last year and reported back to us on medications that were either newly available or in the pipeline, and other breaking news.         I wanted to attend this year, but Wynn and I were invited to a wedding, so we wer...

           A year ago I wrote a blog entitled, "Decreasing Urgency."  At that time, it had been about a year and half from when I was diagnosed with advanced cancer, and because my medication was controlling my disease well, I was able to feel some relief, and hope.  I realized that I was moving away from my initial sense of panic, that was driving me to try to get things done quickly...before I lost my chance.  I wanted my children, both in their twenties, to "ripen" before I died.  I was secure that I had mothered them as best as I could, but there were a few things I still needed to tweak.  I needed to get my house in order - organizing my belongings and getting rid of unused "stuff" that had quietly, and insidiously, accumulated in our basement. My last quest was to create as many memories for Wynn, unrelated to my illness, as I could.      The priorities I had a year ago are still very importa...