Saturday. August 2, 2025. Seventy-five days ago was the start of this latest course of treatment. What’s that old saying, “Time flies when you’re having fun.” Hmmmmm.
On the sunny side, a recent CT scan confirmed that the cancer in my affected lymph nodes and lung nodules continue to shrink. I wouldn’t exactly call that fun, but it does put a smile on my face.
My current treatment cycle is a Dato-DXd (datopotamab deruxtecan) infusion once every three weeks. Dato-DXd is a targeted therapy called an antibody-drug conjugate (ADC). ADCs target specific proteins found on and in cancer cells. The “Dato” half is a monoclonal antibody (just in case you were wondering) that tracks down cancer cells with a specific protein on their surface and attaches to it—in this case the Trop-2 protein. Once inside, the “DXd” chemotherapy half of the equation goes to work killing the cells. I might look cool and collected on the outside, but there is an unbelievable amount of craziness and mayhem going on behind closed doors, so to speak.
The Dato-DxD infusion takes about 30 minutes, but there are a lot of moving parts to the process. There’s the time it takes to get settled into a chair and have my port accessed, followed by premeds (both oral and infused) that sit and stew in my system for about an hour. Then comes the “good stuff” followed by a half-hour of after treatment observation and finally deaccessing the port. The entire process puts me in the chair for at least two-and-a-half hours. That might seem like a long time, but in the past I have had infusions that have taken 5 or 6 hours start to finish. So in the overall scheme of things, this feels like a piece of cake.
With each treatment some of the AE’s or adverse events (more commonly referred to as side effects) become more pronounced. In my case the most challenging AE seems to be fatigue. It is more noticeable and lasts longer with each succeeding infusion. At the suggestion of my oncologist, I’ve started taking American Ginseng in the hopes it will give me a little extra energy. Wouldn’t that be nice. I’m also experiencing a desensitized sense of taste. Like I couldn’t really taste the lemon flavor in the scones I made this morning. My nose is running a lot (no nose hairs to filter the flow). The inside of my mouth is super-sensitive so things like toast and cereal are eaten with caution. I’ve had some nausea, but it’s completely manageable with medication.
A lot of people have asked how long I’ll be on this treatment. The answer is, until it stops working. Even if all the cancer in my body becomes undetectable, the treatments will continue. Perhaps they will become less frequent, say every 4 or 6 weeks instead of every three. Why? What my UCSF oncologist told me is that left untreated, with MTNBC (metastatic triple-negative breast cancer) the risk is that when it comes back—and it will—it will come back in other places. In the last six years, I’ve had a recurrence three times, so I know that risk is real.
Where does that leave me? It leaves me wondering if my current “normal” is my permanent “normal.” I lay in bed a night and try to find acceptance in the fact that I might never have a full head of hair again. I ponder coming to terms with the possibility I might not ever have the energy to go on another road trip by myself, which I love to do. Does that mean I’ll never go to another class reunion? Will a chocolate chip cookie ever taste like I remember a chocolate chip cookie tasting? Is this what my indefinite future looks like? Let’s be honest. It’s hard not to get depressed if I let my brain keep writing the story of my future with cancer for too long.
And the truth is you never know. The future will be what it is. Finding joy and gratitude for what I do have gives me strength and helps keep me grounded. The story I am living today, in this moment, right now is the real story; not the future my monkey brain chatters about in the middle of the night. And it’s a good story. I laugh. I’m happy. I have all my own body parts. I can still bend over and touch my hands flat on the floor. I have a loving husband, a supportive and caring family, amazing friends, sweet and beautiful cats, a peaceful and comfortable home.
Just one more thing. Thank you. Thank you for reading this blog, this story. The story of me and cancer. I know that what I share isn’t always exactly what you hope for, and it can be messy. But know this, I love and deeply appreciate your hope. It feeds me, and it’s a flavor that always tastes delicious.
It’s so easy to miss how often the world gives you quiet gorgeous moments and whispers, this is something I thought you would love. —Brian Andreas & Fia Skye
lana has cancer 