Wednesday. October 6th I mean 7th, 2016. Not 2016…2026.
My 23rd cycle of Dato-DxD was day before yesterday. That’s 18 months of regular infusions. This is the longest I’ve ever been on a single course of treatment.
Today, the first Wednesday after infusion, is always my worst day for side effects—a muddy, buzzy brain that leaves me wired and tired and forgetful all at the same time. Today is the day when all the premeds they gave me on Monday are wearing off. There is a slight edge of nausea, so my appetite is challenged. My mouth is super dry and so are my eyes. I I have a hard time putting thoughts together. I feel restless and bored. I buy things on Amazon that I don’t need. I suppose I could lay around and watch TV (although it’s hard to stay engaged in anything for very long) or nap (if the chemical buzziness would settle down enough to ward off the restlessness). By the weekend the worst of it will have subsided, but I still wear out quickly and the buzziness lingers and will likely last well into week two.
Not a day goes by between infusions that I don’t have to put drops in my eyes throughout the day and every time I wake up during the night. The thing is these side effects are cumulative. Even though the intent of the three-week treatment cycle is to give my body enough time to recover, the longer I’m on continuous treatment, the longer the side effects last. The potential for long term damage to my eyes, lungs (already a weak spot), and mouth only increases.
Don’t get me wrong. Even though it might not seem that way, I’m not complaining. Dato-DxD has been a game changer for me. My health is mostly stable. No new metastasis. Making the cancerous lymph node in my pectoral muscle become undetectable after several treatments and mostly managing the nodules in my lungs, Dato has now evolved into a type of maintenance treatment. A treatment that has come to feel like a slow erosion of my body’s immune system. If there were an end-date in sight I might feel differently, but because I am Stage 4 Metastatic Triple Negative Breast Cancer (MTNBC) this 3-week treatment cycle is indefinite. This will be my regimen until the Dato quits working. Then I’m on to something else. Yes. Thanks to a wealth of scientific breakthroughs, I will have/do have options.
That’s why, if the CT and Bone scans I’ll be getting next week at UCSF are “stable,” I feel like it’s time for me to take a short break from treatment. It just feels like my body is asking for a reset. A chance to truly recover. With my oncologists’ blessing, I believe a 2 to 3 cycle break (6 or 9 weeks) would strengthen my immune system to better fight the cancer that has taken up residence. A timeout from the long-term chemical assault that is working to keep the cancer at bay. A break not because it isn’t working. A break because it’s taking a toll—not just physically, but mentally.
There is not a day that passes that I’m not thinking about my next treatment. What can I get done between now and the next infusion based on the cycle of my bad days, better days and good days? How much fatigue can I expect to I experience after the smallest amount of activity? How many times will I need to sit and rest while watering the potted plants outside? Can I vacuum the house without taking a break or two? Read a book without feeling brain drain? Do I have it in me to make a road trip to visit out-of-town friends or family? I often force myself to stay active knowing idleness just leaves more time for me to sit inside my head remembering what it was like to have a body and mind that wasn’t buzzy or muddy or feeling that chemical fatigue.
So I now spend a few minutes off and on throughout the day every day envisioning unremarkable scans next week. Nothing growing or worsening. Stable. Unremarkable. I see myself enjoying the winter holidays off treatment. And hitting the ground running in 2027 back on the sauce, ready to resume the fight and keep on kicking cancer’s ass.
While we cannot direct the wind, we can adjust the sails. —Bertha Calloway
