Fall 2026 Update and A Shared Perspective

I have been uninspired to write about cancer, so I haven’t. But, in the spirit of no news is good news, things looked pretty good on my September scan. All of the spots in my liver and bones were decreased in size and nothing new appeared. That is about as good as it gets and I’ll take it. I also generally feel better than I did last spring. Between the radiation therapy and healing of the rib fractures, my bones feel pretty good. I also seem to have a little more energy and feel less…crummy….for lack of a better word.

In my last post I indicated the new treatment plan would either be a clinical trial or a targeted, intravenous therapy, trastuzumab. The clinical trial route didn’t pan out like I had hoped, so I started trastuzumab in June. I’m glad it’s working, but it is definitely the least tolerable treatment I’ve had. I don’t get nauseous easily and have never considered myself to have a sensitive stomach, but the nausea I feel the first 7-10 days after treatment is no joke. No vomiting, thankfully, and I can still eat heartily, but there are definitely some waves of queasiness and food aversions. The icing on top of the cake is that I’m on a few anti-nausea medications (dexamethasone, a steroid, and olanzapine, an antipsychotic that also has been found to help with nausea) that cause increased appetite and weight gain. To illustrate, I often feel like I could eat a whole pizza and then a whole cake when I’m on these. Kind of like the opposite of what I assume being on a GLP-1 feels like. Even though I’m feeling crummy, I’m still packing on the pounds…which is a real bummer. That being said, weight loss is a real problem in the cancer world, so I can’t complain too much. It’s a first world problem, as they say.

Other notes with trastuzumab. The formulation I’m on crosses the blood brain barrier, so ideally it’s preventing or attacking any micrometastases I might have in my brain. Unfortunately it also makes me really groggy after treatment. I’ve heard one patient say she felt drunk days after treatment. I wouldn’t say that, I don’t feel impaired as much as really foggy. I’ll find myself staring mindlessly out the window. My mind feels spacey, like I can function, but I wouldn’t want to make tough decisions days after treatment. Low energy is also a problem. Unlike other treatments I’ve been on where it’s stable, with this regimen, it slowly improves as I get closer to my next treatment. Almost to the point where I feel completely normal in the week leading up to my next treatment day. Finally, because this is intravenous and even though I still have good veins, accessing them has been a little more of a debacle than I’m comfortable with, so I had another PORT placed this fall. I had a PORT in 2015 when I had chemo following my first, stage 2 diagnosis. And this brings me to my final point, everything hits differently when the cancer is terminal. I’ve been asked when this treatment will be over. That answer is so different for someone on a potentially curative regimen like I was in 2015 versus someone like me who is basically on a palliative regimen. I’m not going to be cured. At least not with this or anything else we have available right now. The end of this treatment, as unpleasant as it is, is not a good thing for me. It will mean it’s no longer working or the side effects (like serious side effects to my heart and lungs that we have to monitor and watch for) have become too harmful for me. Similarly, the very good hearted, sweetheart of a nurse I had assisting me with the PORT placement wished me the best of luck as I was leaving and said “I hope the next time I see you we’re taking the PORT out”. I don’t envision getting this PORT out. Again, unless something goes wrong with it, but that wouldn’t be a positive for me.

On a more positive note, I finished my goal of running a race in all 50 states in August! I ran a 3.1 mile race in Anchorage, Alaska on August 8th with the help of some traveling friends who cheered me on during the race. It was such a fun experience and a nice trip, a wonderful core memory for sure. I also organized a short celebratory race on Labor Day and that was lots of fun. My final chapter in this 50 state quest will be to write a short book to document all of my experiences running these races.

And finally, while I can’t say I follow many other bloggers in the metastatic breast cancer world, I do follow one. She has followed a similar tragectory to mine (she is my age and was diagnosed a year earlier, in 2017) and her writing has been spot on in terms of describing many of the obstacles I face and feelings I have. She published many good articles in October and I have shared one of my favorites below. Unfortunately she passed away last week and that has filled me with grief, sadness, and honestly some fear. I will miss her writing and her tireless advocacy. She was one of over 3,500 people that died from metastatic breast cancer in October. Too many for sure, and so sad.

Nobody Knows What to Do With a Cancer Haver’s Anger