The last several months have presented our family with significant changes. My mom retired after working for 60 of her 72 years on this earth. Her work was on her mind so much it used to wake her at 3 or 4am everyday. Since Fin was born I have talked to my mom every morning after daycare drop-off. I still talk to her most days, but sometimes when I call her now she doesn’t pick up. Because she’s sleeping in. She’s on her own time now, redefining her routine and her purpose.
After 12 years working in my company’s service ops division, driving to the same building everyday, I took a new job managing in IT. I felt like a kid going to a new school. I left a place where I knew most every face in the hallways to sitting in meetings where I knew no one and a precious few reached out to welcome me. I experienced all the anxieties you feel when you’re in new surroundings and meeting new people, AND I also had to learn a new language, IT-speak. I’ve never heard so many acronyms and numerical references crammed into conversations until I took this job. I can now say after just a couple of months, I’ve made some great new friends, I’ve proved to myself I can thrive in any situation (if I allow myself to be vulnerable), and I’m learning SO much from some wonderful and brilliant people. It’s exhausting and life-giving all at the same time. My relocation meant Fin had to endure a change too. We moved his daycare to a center closer to my new office as I traditionally handle all of the drop-offs (Jeff benefits from going back to bed every morning when we leave to help his body handle his treatment). For nearly three weeks Fin cried when I left him in his new classroom, he went on a hunger strike for several days, and he was just generally out of sorts. Now, he can’t wait to go ‘home’ every weekday to see his teachers and new friends.
And finally, Jeff started a new treatment. After 18 months of severe side effects (though he never complained) on Ceritinib, his second targeted therapy, he started Alectinib which was just recently approved by the FDA. Like the rest of the changes that were happening during this time, a treatment change brought on a whole host of uncertainties and anxiety. Did we make the right decision by going with this drug or would a clinical trial drug have set up us for longer term success (aka living)? Should we have pushed the limits with Ceritinib and tried to squeeze more time out of it? How’s he going to feel? Is it going to work? In November he started Alectinib and scans were scheduled for February. A reprieve of sorts going that many weeks (and through the holidays) without a scan looming. But it also meant some of those questions would remain unanswered until then.
Then there was another change. I won’t belabor the issues and concerns at hand under our new administration (if you can call it that). There are many issues on the table that concern us all, and some that concern some of us more than others, at least at the present time.
Fast forward to last week. Countless executive orders, bans and embarrassing Twitter storms later, we got great news in our little world. Stable scans. But not just any stable scans. For three years we’ve compared one scan to the next looking for subtle or major changes in the cancer. But this time when we reviewed the results we also looked back at the original CT scan of the primary lung tumor. What remains from that original tumor, his oncologist believes, is scar tissue. And the lymph nodes that have been riddled with cancer are all greatly reduced or healthy compared to that first scan. The brain scan which at one point in time showed 17, yes that’s SEVENTEEN brain mets, now shows just a few, all of which the radiation oncologist proclaimed last week as dead. The liver is still healing, we are watching it closely. Though we are not out of the woods, we never knew if we would achieve such success with managing his disease, but we always had hope.
What we’ve learned these last three years is that action fuels hope. We have acted as our own advocates in the treatment process. And we have advocated for the greater cause participating in numerous lung cancer awareness efforts. We have prayed and trusted our faith to carry us through times of despair. We have humbly accepted gift from friends, family and strangers. We’ve been blessed with support of all kinds; meals, house cleanings, yard maintenance, prayer services at church and in our home, monetary gifts, gifts of time, and so much more. Without being open to any or all of this, without taking actions, simple actions (simple on the outside, sometimes pride-crushing on the inside) like saying “yes, I’ll accept your offer to help us,” I don’t believe we’d be where we are in this journey.
Whatever your change or your challenge today, know that there is always hope if you’re wiling to do something. If your only action today is simply being open to the idea of hope, that’s something. Much love and much hope. xo.
And in the end, even if a scar remains it means you survived.