These past two weeks have been incredibly challenging. Unfortunately, last Tuesday we learned that the drug that I had taken since February, Lorlatinib, was no longer working and I had progression of disease…
This time to both lungs.
Despite the fact that we always knew that this could happen (and with lung cancer, there was a very high probability), I was just so close to that miracle. My NED status was taken away from me much sooner than I had hoped. This time when I was presented the news, after having fought and advocated for lung cancer over the past 19 months, I had a much greater understanding and knowledge of the disease. Living with lung cancer will now be my new “normal”. I will live treatment to treatment praying that research and funding continues to grow to provide more treatment options.
Despite everything that has happened since April 21st, 2015… I absolutely love my life. I consider myself to be one of the luckiest people in the world because I am surrounded by the most amazing people. Without them, I would never be able to have the outlook on life that I do. Each and every day is a gift and I will continue to fight for more days, months and years with my family. I was able to witness another of Jack’s 1st’s a couple week’s ago as he took his first steps! I was so terrified on the day he was born that it was a milestone that I would miss – thankfully because of science and research – I am defying the odds and witnessing miracles every day.
When we returned home from the hospital that night after receiving the news, I decided that Jack would have “Christmas in November” because life’s too short for super amazing Little Tike’s Kitchens to sit in boxes waiting for a holiday. Jack’s reaction to his new gift, that was meant to be for Christmas, was nothing short of perfection. You can’t tell me I’m not the luckiest human on earth to be his Mom.
Now here is where I ask for YOUR HELP: WE NEED MORE RESEARCH! Lung Cancer is the most underfunded disease but yet is the deadliest cancer! With a 5-year survival rate of only 17%, it is time for those statistics to change! When I was first diagnosed, I sent my tissue away to Foundation Medicine for comprehensive genomic testing. I then won the cancer lottery by testing positive for the ROS1 mutation. Unfortunately only 1% of lung cancer patients test positive for ROS1 which means that research is limited. The ROS1 community is an incredibly close “online family” of people. Mothers, fathers, daughters and sons from all across the globe. Almost all of us are living with Stage IV Lung Cancer which means that when one treatment fails, we are desperately seeking clinical trials or new treatments that may come available. Unfortunately, they are not coming out fast enough so I ask you to:
This is a patient-driven, patient-focused ROS1 positive cancer research effort and several ROS1ers have come together to fundraise for this project. The Addario Lung Cancer Foundation has set up a restricted account just for this project. All money raised by the ROS1ers’ efforts will be added to this account and used to fund research efforts specifically on ROS1-positive cancers. (Thank you Bonnie Addario for all that you do!)
I will always have Hope. Lots of it. Hope for new research, treatments and for more time. More time to witness Jack’s “1st’s”.
It truly is my dream that as research and funding continue to grow, lung cancer will be, if not curable, a chronic disease.
Thank you for your endless support, love and prayers.
P.S. My blog was nominated as one of Healthline’s Best Health Blogs. You can vote daily (until Dec 12th) by searching “Lizzie’s Lungs” HERE.
Top prize is $1000 – which I would donate to Lung Cancer Research!