The Few…The Proud…The ROS1ders!
Updated: Feb 15, 2022
I usually start my cancer story on the day I entered an emergency room for abdominal pain and learned I have metastatic disease. Since my story took a turn 8 weeks later, this time I will start by letting everyone know that 6 ½ years later, I’m alive and well. Although most years have been good, there have also been dark and scary times. I was 54 years old and I had a single 3 cm lung tumor that had seeded my liver and many of my bones, (cervical vertebrae, spine, shoulders, sternum, ribs, pelvis, and femoral heads.) My liver was ginormous,(hence the abdominal pain), and all liver tests were abnormal.
I tested negative for EGFR and ALK mutations, and started on traditional IV chemotherapies. After two rounds, I had disease progression. My oncologist wanted to test for mutations in a newly described gene called ROS1, but the biopsy had to be delayed due to bleeding risks associated with one of my chemo meds, Avastin. While waiting to have a second biopsy, I had a round of docetaxel which kicked my @$$. I was so sick that I had serious conversations with my husband about discontinuing therapy. I needed his support in choosing death. Thankfully, before the second round of docetaxel, my biopsy found I was ROS1 positive. I started crizotinib in March, 2013 and continue on it today. I had side effects early on, but most have dissipated over time. I still manage nausea, but most days do well.
In 2017, I had a small brain met that was successfully treated with CyberKnife. CT scans and brain MRI every four months show that my disease is stable. I have no breathing problems, but continue to struggle with bone achiness. My liver is back to normal, with liver enzymes, mostly, within normal limits.
Since December of 2012, I’ve spent loads of time and energy managing my health. I’ve also exerted time and energy doing what I can to be a balanced human being. Here are a few things I do and think about a lot:
I work. I’m a genetic counselor 3 days a week in a busy practice. I love my job, which is good since I need to work for good health insurance. (crizotinib is a covered benefit. Whew.)
I work out every day. No exception. Sweating and feeling my heart pump helps me feel I’m making myself strong. Some of this is for physical health, but mostly it is for emotional and mental strength.
A few years ago, I decided my goal is to be the healthiest looking sick person I know.
I travel whenever possible. I used to bank PTO for that big trip I would take someday. Now, although I bank vacation days in case I need time off for illness, I’m focused on time to travel with my family, visit family and friends, and experience new places. I always thought I’d travel in retirement, but since I may not get there, I’m doing it now.
The weight of being sick is more than just a personal burden. My illness has profoundly affected my husband, children, and mother. Since day one, I’ve done my best to maintain an active role as wife, mother and daughter…because I love them so much. It’s often exhausting, but I choose this.
Given that I’m not in control of this diagnosis, I’ve opted to incorporate my illness into my life. I plan to not only salvage the years I have ahead, but to live the best and fullest life I can. I can’t control my diagnosis, but I’m controlling my response to it.
I am humbled by and grateful for many things, including my fellow ROS1ders. I’ve learned so much about my disease from this group, and greatly appreciate the collective effort to share information and advance research. It’s all for us and I am proud.
Note: A couple weeks after discovering my cancer, I started blogging. Occasionally, I go back and read where I’ve been. It’s my cancer diary, but it also reminds me to savor life’s joys (trips, weddings, babies, graduations) and brace myself for life’s other crap (mother’s stroke, home burglary, brain met, hip replacement and femur fracture). My blog: “Cancer….An Unexpected Journey” is at lunaoblog.blogspot.com.