I can’t imagine traveling this cancer road alone. No one should ever, ever have to. I’m so very grateful that I’ll never have to. In fact, my family has grown through this journey. This struck me again today when the caregiver wife of a ROS1der posted a heartfelt and loving message to us all. While I’ve never met any of the ROS1ders, I feel incredibly close to them in the 22 months since I found the facebook group established for cancer patients who are ROS1+. This family has nearly tripled since I found it, and is worldwide.
The ROS1der FaceBook group is a closed group (public site: ros1cancer.com), and I cannot share the details of that lovely post or anyone’s specific information, but I can share what makes them my “family”. Most, but not all, have lung cancer. Most, not all, have metastasized cancer. Most, not all, have been on the drug Xalkori crizotinib, my treatment hero, the reason I survived long enough to even call this a journey. Many, maybe most, are younger than me, many with children at home. Many have had treatments that I’ve not had. Many are in clinical trials, some on the same drug as me (lorlatinb – hero drug #2), some on other targeted therapy drugs that are giving hope to ROS1ders. All are either ROS1+ or the caregiver of someone who has ROS1+ cancer as required to be a group member. Because of all we do have in common, there is always someone who understands, or can relate to, what another is experiencing. Beyond that even, there’s just such a feeling of empathy and sincere caring about one another’s well being in the group. In this group we share information, learn how different oncologists approach different topics, hear about procedures and tests as described by the patient, get the latest news on clinical trials and research, share tips about dealing with side effects and symptoms, options for and how to access healthcare/treatment, and so much more.
I’ve tried to think what it is that makes this family so very special compared to other organizations I’ve been part of and even considered family. I believe it is the never-ending optimism, the incredibly high level of HOPE, STRENGTH, COURAGE, and FAITH. The people in this group have so many (not every!) reasons to feel and speak only doom and gloom, but not in this family. Our fears, worries, and sadness can be freely expressed and we know they will be responded to with caring and genuine concern. It is a safe place. This is a difficult road to travel. Love, compassion and support, research and answers, virtual shoulders to cry on and hands to hold are all offered. Always, always with an eye on a future where, if not a cure, then treatment for managing cancer as a chronic disease, always HOPE.
My ROS1der family, a FaceBook group. Who knew I’d find such camaraderie in such a place. Huh. Another of the countless blessings that have come my way on this journey. May every human needing such a place, find theirs.
Finding joy in the everyday, every day.
polepole ~ breathe 