June Update

It’s been months since I’ve updated this blog, and life has rolled, slid, lurched, stopped and gone and done quite the turnabout.

The short of it is that the cancer is in remission. The most recent PET scan showed that there is currently no evidence of active disease. The tumors are still there, but the chemotherapy (Carboplatin, Gemcitabine) has rendered them dormant. Those tiny varmints are sleeping. Listless. Dull. Eyes closed, little one.  

This is of course “good” news in the conventional sense. And oh how I pause at this word “good.” Because “good “ is supposed to mean happy. It’s supposed to mean a party, a celebration, cakes with candles and the luck of being alive. An arc of fireworks to disguise lamentations. Weathering calamity. See how the showers hiss home. Almost witchcraft.  

And that’s what my current state feels like: outlier status with a dose of cautious optimism, all while standing on an airport’s moving walkway. A flat escalator that has suddenly stopped its trajectory to death.  

It’s quite a shock.  

No Evidence of Active Disease. NEAD. What this means is that I’m stopping chemo for now. My bone marrow gets a reprieve. Immunotherapy (Tecentriq) continues. But the side effects (extreme fatigue, nausea, headaches, constipation, depression, hair loss, low blood counts, body aches) should slowly ease up. This summer will be one of healing. I will go slow.  

And here’s the thing: I did nothing special. No special diet, no extra workouts, no special herbs or positive meditations or supplements. I just went to chemo and did the best I could. I drank Coke once a week and ate some sugar. I rested. I drank coffee with friends. I’m not vegan.  

I’m saying these things to offer hope, and to get across that I’m not special. I’m not chosen or especially worthy—no sainthood badge here. I’m just lucky.  

Lucky to be alive and to walk and sing (tho my teen daughter would disagree there) and gripe and garden and be.  

And I know this may not last. 

But oh how the soil sings in my fingers, how the seeds fall so.

9 thoughts on “June Update”

  1. Johanna, I’m so glad you’re keeping up with your blog. I check over here every once in a while to see how you’re doing. Hurray for NEAD! Congrats on achieving this milestone, in spite of your claiming you didn’t do anything special. You’re here to do the work you came to do and you’re still doing it. Makes me happy! Lots of love to you.

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      1. Hi Johanna, I can’t seem to find the email that you recently sent me. Hopefully one of these old email addresses will be delivered to you. I meant to reply to you sooner, but then life happens.

        I appreciate you telling me of Rosalie’s passing. I feel sad about it. I hope she got to spend as much time with her granddaughter as she wanted to. I recall that it brought her much joy.

        It makes me feel like we are in a special club: the survivors. The way I think about it is that we must be here for a reason. Glad to stay in connection with you.

        Blessings, Vicki

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