Caroline's Breast Cancer Blog

     Aside from being a lung cancer ninja, I've been a genetic counselor for 35 years.  I love my job.  I don't have any difficulty getting my morning routine going so I can get to work because I enjoy being there.  Up until 8 months ago, I was working with a medical geneticist in a Pediatric Genetics Clinic.  When the medical geneticist retired last summer, I was moved to Maternal Fetal Medicine.  I now see pregnant women who are at an increased risk for having a baby with a problem.  On most days, I'm able to give my patients reassuring information that their baby appears just fine.  But because Maternal Fetal Medicine practices see 'high risk' pregnant mothers, the nature of our business is a poignant reminder that things don't always go well. However, I feel that the work my team does makes a positive difference in the lives of our patients.        This past week I saw a patient that is making a di...

     Today I am celebrating my 59th birthday!  I woke up with a really bad cold this morning, feeling miserable with typical bad cold symptoms.  When the morning mind fog cleared and I realized that it was my birthday, I was energized to make the best of my day because I never thought I'd make it to 59 years.  One week shy of five years ago today, December 14, 2012, was the day I learned that I have stage 4 cancer.  At that time, the chance that a stage 4 lung cancer patient would ever become a 5-year Survivor was a measly 2%.  TWO PERCENT!  I found a more recent stat from 2016 indicating that the 5-year survival rate is now up to 14%.  With new treatments and technologies, that's a whole lot better, but an 86% death rate is still pretty crappy.        Along with my new iPad, (thank you, Wynn), my other big birthday gift was my most recent brain MRI result.  The small tumor that was CyberKnifed back in...

     I've got a lot going on.  Couple stage 4 cancer with routine, run-of-the-mill, maladies and I end up seeing a bunch of doctors.  Just in 2017, I've meet with seven new doctors and will probably meet two more by the end of the year.  Upon meeting me for the first time, the last three doctors said some version of  "You look better in person than you do on paper."  Each time, I took it as a complement...but it also reminded me of how sick I am.       Last week, I met a gastroenterologist.  As he read over my records, he said the line..."You look better in person than on paper."  So I told him that my personal and, until now, private goal is to be the "healthiest looking , sickest person I know."   I told him that I'm trying to eat right, sleep right, and exercise daily.      Decades ago, I became a jogger as an efficient way to keep my weight in check, manage my cholester...

     Well...I was very close to being able to do it.  I was almost able to wait a full 6 months between CT scans this time. I initially scheduled this round of scans 6 months from my last ones, but unfortunately in late September, I had a couple weeks of feeling really crappy, (more than the usual fatigue and not just some achiness, but down right pain, especially in the bones of my left hip).  As I have done before, whenever I feel crappy for more than a few days, I convince myself that my cancer has figured its way around my chemotherapy and that I've entered the phase called "disease progression."  Despite trying to be as reasonable and rational as possible, I know that I'm not over reacting...the clinical trial report indicated that the average ROS1 lung cancer patient on Xalkori will have 19.2 months of disease control.  I've been on Xalkori for 55+ months.  (Pretty soon that will be 3-times longer than expected!)     ...

...but now think I may die at the hands of white supremacists whose fire is being fueled by trump's support of their hate, bigotry and racism...or maybe by a nuclear bomb sent to the Chicago area by the North Koreans because of trump's ignorant and antagonistic rhetoric.  It sure seems like trump is going to get us, Americans, killed...one way or another.       I still may die of cancer.  I prefer that.  It may be sooner rather than later, if the Republicans and trump repeal and replace the Affordable Care Act with something that removes the pre-existing conditions clause and adds lifetime caps.  Despite recent failures to pass repeal and replace legislation, the Republicans and trump seem hell-bent on bringing it all up again because how else will they be able to pass tax cuts for the rich unless they take away health care from 30 million Americans and restrict access to care for those of us with existing conditions? [http://www.cnn.com/2017...

     This summer, like most of my summers, has been a busy time for me.  When we're not working, Wynn and I are usually out riding our bikes, meeting friends, working in our garden, hanging out with our kids, and fitting in a long weekend away.  The past few months seemed to fly by, and although we visited friends in NY in early July, when I looked at our calendar, we haven't done all that much in way of recreation.  What is abundant are medical appointments.       Earlier this summer I was experiencing some new symptoms.  They were very subtle and infrequent, and somewhat difficult for me to describe.  In mid-June I had an appointment with one of my many doctors and I did my best to share with her what I was experiencing.  All of my symptoms could be explained away, but they could also all be caused by a single problem...metastatic disease to my leptomeninges.  Here's what I've learned about the leptomening...

     Until today, this man has been my oncologist.  His name is Robinson Ortiz, MD and I credit him with saving my life.  Dr. Ortiz was the guy on-call the day I was admitted into the hospital, through the ER, for a metastatic disease work-up.  That was in December of 2012.  He was kind from the moment Wynn and I first met him.  He gave us terribly bad news, gently, so we could absorb the words he had to tell us.        As soon as it was established that I had non-small cell adenocarcinoma of the lung, Dr. Ortiz ordered genetic tumor testing for mutations in two genes  known to cause the type of cancer I have.  Based on my demographics, the chance that I'd have one of these was estimated to be 80-85%.  I had neither.        Dr. Ortiz then recommended testing for mutations in a newly described gene  called ROS1.  Earlier in 2012, journal articles associating mutations i...