Nice to be Loved!

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On November 5, 2017 in the very early morning my sister Nada was one of several family members and friends to make a two hour drive to participate in the annual Save Your Breath 5K Save Your Breath 5K FaceBook, a run to support Free ME from Lung Cancer.  It was her birthday.

A few weeks earlier Nada and her daughter Betsy had decided to get together a team in my honor.  Pretty nice!  The team was named for this blog, Team polepole.  And then, t-shirts were made for all eleven team members.  Not just any t-shirts, but hand tie-dyed t-shirts with polepolebreathe.blog ironed on each by Nada. Even nicer!

So on that brisk Sunday morning some of us ran and some walked a shorter distance.  While we were raising funds for Free ME from Lung Cancer, we were also showing support for the lung cancer community; those living with lung cancer, survivors of lung cancer, and also honoring lives lost.  It felt special, much like our family participating in the Komen run in my mom’s memory.  Only different.  Different for a few reasons.  First, our team was participating in my honor.  Wow. Second, while there were quite a few runners, there simply is not the same kind of societal support for the lung cancer community.  Humbling. Next year I’ll ask that we run/walk in memory of my dad too. We can now see beyond the stigma and understand.   It’s important that we try to teach others.  Too many are dying (433 Americans per day) because of that stigma.  Another reason that day was special?  My sister’s birthday of course!  I felt honored she chose to spend it in this way.  And honored that so many others did so too.

After the race Team polepole had breakfast together.  The busy restaurant was perfect for our noisy group.  The birthday girl polished off a large platter of strawberry crepes.  We’re in the business of making memories these days, and I’ve great memories of that day from seeing Team polepole and cheering on the runners to the breakfast chatting.

A final note – At the SaveYour Breath 5K I met Dave Eid, sportscaster at WGME in Maine. Dave’s wife Lisa is a fellow ROS1der, and Dave is on the Free ME from Lung Cancer Board.   Just after my grandson finished the race (beating his mom!), Dave had arranged for us to be interviewed: News interview

 

 

Sharing the Journey

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.

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Dr. Pasi Janne, Dana-Farber, and Bonnie Addario, ALCF

Below is a short video of my oncologist with Bonnie Addario, both heroes.  He is the head of Thoracic Cancer at Dana-Farber Cancer Institute.  She is a 13 yr lung cancer survivor who founded the Bonnie J. Addario Lung Cancer Foundation.  “The Bonnie J. Addario Lung Cancer Foundation (ALCF) is one of the largest philanthropies (patient-founded, patient-focused, and patient-driven) devoted exclusively to eradicating Lung Cancer through research, early detection, education, and treatment. ”  The foundation is doing some pretty amazing work with/for the ROS1ders. (ROS1 Global Initiative)

Dr. Janne and Bonnie Addario