Medical updates, January 2026

2025 was a bit of a dumpster fire in relation to my medical care. It is only now looking back on the previous 12 months that I can begin to see just how bad it really was. It wasn’t just the specific side effects of Enhertu that put me into a foggy state most of the time, but also how many new and complicated things I had to manage.

The year started off relatively typically in this Stage IV Metastatic Breast Cancer (MBC) experience in that it was full of appointments and side effects from the Antibody Drug Conjugate (ADC) I was on, Enhertu. First left turn was when I received a letter from my local healthcare system stating that I owed over $197,000.00 and there was a coordination of benefits (COB) issue. Turns out, someone felt an expired prior authorization (PA) for one of my pre-meds didn’t need to be renewed for over 14 months and then the system decided I had to pay for it. At the end of several months and 100s of phone calls and messages, I didn’t owe anything and there wasn’t a COB issue, but it took more than 17.5 hours to get it ironed out, an unconscionable burden to pass along to a patient.

Second left turn came up in March when I was diagnosed with blood clots inside my heart. I had no idea that the cannula connected to the port comes in one length and then has to be adjusted to the anatomy of the patient. Well, the interventional radiologist (IR) who put in my second port didn’t measure so well (my anatomy is short everywhere) and the cannula was so long that the tip was striking the wall of my heart. In response, we believe, my body formed blood clots to ensure that my heart wasn’t damaged further. That meant skipping a few infusions of Enhertu, a procedure to remove the offending port (worst experience I’ve had in healthcare), oral meds to keep my heart and other organs healthy, more cardiac surveillance, and eventual progression. We learned a little too much about how cardiac health can impact oncology care and how important it is to have providers that can straddle the line between their specialty and what needs to happen differently for oncology patients.

Third left turn happened around the 4th and it had to do with selecting a provider to insert my third port after getting cleared to have another port. Since I’d had a great experience the first time with the surgeon who did my breast surgery, I decided to seek her out instead of trying again with the IR groups, which proved to be a bad experience twice. It wasn’t a great experience with appointments being summarily canceled and then the surgeon refusing to actually talk to me and passing questions and answers through staff who were frustrated from the beginning because I’m not her typical patient any longer. Very disappointed in how I was dismissed and there was no recourse, which meant I had to go back to interventional radiology to get my third port inserted.

Fourth left turn of the year was being diagnosed with a new primary cancer, melanoma. I’ll write more about that experience, but suffice it to say, I felt a birthmark change and knew enough to get it checked out. Getting the results of that biopsy revealing cancer was a very different experience from the breast cancer news, not necessarily better, but I did have a different skill set to be able to understand and digest this news.

5th (and maybe final) left turn of 2025 was learning that Enhertu had truly failed me and I had to select yet another line of treatment, my 10th. I am very thankful that the progression is minimal and bone only, which gave us some room to maneuver. In a bit of a surprising twist (to my medical teams), I elected to try an oral option, TruQap/Capiversitib with Faslodex/fulvestrant versus moving to yet another ADC or more traditional chemo. I’m well aware that most patients in my position don’t have as many choices nearly nine (9) years after my de novo MBC diagnosis, but I needed a break. A break from the constant appointments (and all the medical and billing errors); a break from the constant reminders that I’m sick all the time; a break from all of the side effucks; a break from looking sick; just, a break. I started this new line in December.

Despite all the left turns and extra stressors from 2025, I am pleased to report that my third port was inserted prior to my deductible and out of pocket maximum resetting and it has worked quite well thus far. We decided to name this one, since I’m hoping she will be part of me for a very long time, so meet Portia the Equalizer:

I’m planning to get back to blogging this year and have several posts planned for January, so will see how that goes!