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

First Day of School

Today is the first day of a new school year.  And where am I?  Making garlic dill pickles and sitting on the deck here at camp, with my feet up, watching the seagulls.  Weird.  That’s how it feels.  Weird.  I shouldn’t be home, you see.  I should be at school.  In my classroom, with my students.

While cancer can’t stop some things (Camp Gramma!), it has stopped me from doing one of the things I love – teaching and learning with children every day.   Today is the first time in a very long time that I wasn’t directly impacted by the first day of school.  Why, even when I was a toddler, my older siblings left me on the first day of school.  Then, I went to school for years.  I took a six year break from school while the children were growing, and then spent years with them being in school.  While that was happening, I went back to school and became a teacher.  From there, I’ve not missed a first day of school.  That’s a longstanding tradition.  A tough one to try ignore or think of as “just another day”.  It’s THE FIRST DAY OF SCHOOL, and it means something to me.

Last year I tried to work 60% time, and I think did so quite successfully until the end of May.  I know it was important to me that I be there, and I hope my students benefited from my presence.  I appreciated my school administration’s willingness to let me job share.  I’m grateful to Andrea for being my longterm sub through my sabbatical and my illness.

So it was, in May 2017, we got confirmation that cancer had crept past my magic friend Xalkori (crizotinib) and we would need to move to the next line of treatment.  Yeah, I already knew – we’d been watching the beast creep in, and there were symptoms for a couple months, but now decisions had to be made, appointments were scheduled, “cruise control” shut off.  Time to apply for what, in the world of Maine teachers, is called “retirement disability”.

The term “retirement disability” really bothers me. It has nothing to do with retiring, and is about accessing that retirement fund for disability.  I wanted to retire on my own terms, when I was “ready”.  Retirement should be joyful! I was occupied with completing forms to giving permission to MainePers to access my medical records so that someone could judge whether I was disabled enough to qualify for benefits.  It was not the retirement I had envisioned. (I am though very grateful for having benefits to apply for, and access to health insurance.)

Back to today, the FIRST DAY OF SCHOOL.  Today, I am joyful on this first day of school.  The paperwork stuff (another story) all worked out.  I had a wonderful summer of teaching and learning with children all summer.  I am here in the place that I love for longer this fall than if I was back to school today.  And, even if it’s not every day, I know I will be with children learning and playing, either with the grandchildren or volunteering in my dear friend Kathy’s classroom.  It’s the first day of school, and I’m drinking my afternoon tea.