Yesterday was a very good day. It felt almost normal. I chatted with neighbors as we left the building together. When I walked down the street, the doorman from a nearby building called hello. Because of new habits, I hadn’t seen him in nearly two years, but he had a friendly wave and what appeared to be a smile beneath his mask. We spoke as if long lost friends. At the post office, the line was short and the agent cheerful and talkative while efficient. I met a friend in the park and we sat in the sun as we caught up. Later, we joined friends for dinner and a concert at Carnegie Hall. All these encounters, from the small and inconsequential to the dear and significant. It could have been any random day prior to the pandemic, but for all its normalcy—and because of it—it felt remarkable.
I remember the joy I felt after getting vaccinated last spring, thinking the worst was behind us. But, as with the celebratory feeling the day I finished chemo, there was so much I hadn’t anticipated. The resurgence of the virus and the fear of a new variant, like the fear of recurrence, kept us paralyzed and hypersensitized to minute changes. The continued masking and zooming and strange adaptations required during pandemic life, like the lingering side effects from treatment, felt so far from normal, making it hard to imagine what the future would bring.
Normal Isn’t Normal
One of the things that makes ending cancer treatment so challenging is the contrast between expectations and reality. Everyone assumes you are done and ready to bounce right back, but that is so far from the truth. So many friends and supporters drop you like a hot potato, thinking their role as loving caregivers is no longer needed. Meanwhile, not only are we still dealing with a deconditioned and abused body, but the lingering uncertainty about the stability of this newly declared end-of-treatment state makes it hard to imagine what the future will hold, or to plan beyond a day, a week, a month. Patients that I mentor often ask how long it takes for things to go back to normal. But the truth is, what was normal isn’t normal anymore.
Years later, I still find my body isn’t the same, and neither is my mind or my soul. The ravages of age, compounded with hormonal changes and lasting damage from surgery and chemo, have left me a different woman. Creaky joints and fragile bones. Thinning hair and dry skin. Sluggish digestion and racing appetite. Restless nights and a hunger for afternoon naps. Frustration, but also gratitude, advocacy and compassion.
Moving On and Out
Now, as I approach the six-year anniversary of my last chemo, and the lifting of the State’s mask mandate, I am hopeful. I no longer assume that a spike in my cancer marker mean a return of the disease, but rather can reflect without anxiety on all the other contributors to inflammation that might be influencing the notoriously unreliable number (in the most recent case, a second Shingles vaccine) and await the results of a retest—normal. I am beginning to trust my body again and not jump to the wrong conclusion, like a soldier with PTSD at the sound of a car back-firing. And I am beginning to trust in power of my immune system after three COVID vaccines, and the declining community transmission, to keep me safe.
Nothing is quite the same as it was pre-cancer. And I don’t expect that life will return to pre-covid normality either. But I am optimistic that I can learn to live with my new understanding of myself and my risks to get on with life.
Last night’s concert was a piano recital that started with a Beethoven Sonata. It was soulful and joyful and so full of splendor. The pianist, a big bear of a guy, has the fleet fingers of a much slimmer man, but with all the power his size would suggest. Saturday we are headed to Madison Square Garden to hear another bear-like pianist, Billy Joel. His music will be equally energetic and soulful, and the occasion will be so joyful, liberating and celebratory, especially when he sings so defiantly, “I’m moving out.”
Such good insights. Nothing is ever as it was pre-cancer and now, pre-pandemic. Both traumas require us to navigate ongoing uncertainty as best we can. I prefer to frame it as moving forward rather than moving on. For a lot of reasons, I’ll never move on from cancer. It’s just not possible. Regardless of what the future holds, I move forward each day, or at least I try to. And that is good enough.