Health Update Sept. 6, 2018

Nothing but smiles!  You know it’s good news when at the end of everyone’s long day, we’re all smiling – oncologist, patient, and caregiver.  Worth that traffic, worth staying overnight, worth going through a day of tests every nine weeks (lots better than the 3 at the start of the trial).  “Everything looks good.  Your brain MRI looks great!”  Wow, what more can we hope for in a visit.  Feeling grateful and blessed.

Yes, I still have metastatic (stage IV) lung cancer.  Yes, it is still hiding out in my lung, my liver, my colon, my brain.  We coexist in one body.  We will for life.  But, oh what a great life it is!  Since my first targeted therapy (my superhero Crizotinib Xalkori) in March 2016 to now I’ve learned to find joy in the everyday aspect of living in ways I don’t think I’d have taken the time to if not for this ROS1 cancer.  Since the Lady Lorlatinib (my clinical trial drug) charged in (July 2017) to protect my brain meninges as well as the rest of my body, I continue to not only survive with metastatic lung cancer, I’m LIVING well.  I know I am lucky that I’m able to simply enjoy my days, at home, free from fretting about needing to work, free to do as much (or as little) as I feel like doing. My heart aches for those whose circumstances don’t allow them to do this.

I continue to volunteer for Lung Cancer Alliance as a phone buddy and as a patient representative on a grant advisory board, as well as on an advisory board for the Maine Lung Cancer Coalition.  Also, as a ROS 1der, I try to spread awareness about the Global ROS 1 Initiative ROS 1 Patient Driven Research and the need for research funding so we may work toward the next treatments (as resistance occurs and the targeted therapy becomes ineffective), and ultimately a cure in the future.  Donations (ROS1 research donation) and ideas for raising funds and funding sources are welcome.

Thank you for your continued interest in this cancer journey, your prayers and positive words of encouragement.  Time for me to pick some peppers and tomatoes, maybe make a little salsa.  For the next few weeks I’ll be finding joy in the everyday, every day at our Salt Pond camp with Dan, the three little dachshunds, and… our two Nigerian Dwarf goats and two Tennessee Fainting goats (yup, it’s true, the herd grew.).IMG_9895.jpg

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