Almost 4 years since diagnosis

 I haven't needed this much, so the blog has largely languished, other than sending select pages (e.g., the shopping / prep list) to people who have had to deal with recent diagnoses.

This week has been different.

I started this as a way to communicate when I had been diagnosed and was going through treatment. Treatment is ongoing, given the endocrine therapy that has caused me tons of issues. But the point was to make an easy place for me to just update everyone in my life.

Somewhere along the way, it became essentially a journal.

I haven't posted in a while, but maybe I should catch up.

Things lately:

- pain continues. Due to tamoxifen, declining estrogen levels, or both? No way to know. But fucking hell the pain migrates and is constant.

- my surgeon is leaving the hospital and moving across the country and I'm heartbroken...but hopeful I'll never need her again.

- my sleep has improved substantially with the Veozah, but after a year, the "savings" plan ended and it's not cheap. My insurance at least covers it at some level so it's $70 and not $400...but it's clear that sleep is a privilege. 

- a new med has been approved that works similarly to Veozah, acting on two neurokinins instead of one that cause the hot flashes. There are of course fewer data because it's newer, so my oncologist is reluctant to move me since Veozah works. Fine with me.

- a new medication is in sight. Premenopause, women are prescribed tamoxifen and its relatives which are selective estrogen receptor modulators (SERMs). Estrogen floats through your body (generally bound to a protein, but that's irrelevant here), and then has its impact by binding to receptors that match its shape. SERMs hit those receptors and prevent estrogen from binding to it. It's a handy way to prevent hormone-receptor positive cancer cells from getting the estrogen they crave. However, a selective estrogen receptor degrader (girdestrant) is close to FDA approval: soon something that kills off the receptors themselves may be available. I've read a couple of papers but my doctor seems really encouraged by the data. What populations the medication will be approved for remains to be seen though. totally different mechanism, and such a fascinating way to approach it. 

- I felt something on my right side last year. My doctors are awesome and listen to me, so we ultrasounded it. Nothing.

- I felt it again. We ultrasounded again. nothing.

- This week my oncologist could actually palpate it (it'd been somewhat hard to find previously), so we went to yet another ultrasound. I mentioned it'd been imaged multiple times and that's when I learned they were imaging my chest the whole time. I have minimal feeling in the region, so it's hard for me to really know where the ultrasound wand is. That was incredibly frustrating. But they seem to have imaged the correct area this time and it was fine.

- The next day, I got an email from the breast center with a notice of the reading and it was fine (other than that being the first time I knew the breast center had its own messaging system outside of MyChart...). But shortly after that, I got an email from "High Risk Breast Cancer."

- Any survivor will tell you that there is a terror of it coming back that you just can't shake.

- I am not high risk. Or if I am, no one has told me...

- Said email was to tell me that my surgeon was leaving the hospital. But from that email address? REALLY?

It gets worse.

- I opened the email to discover that the sender had not BCC'd the list, so everyone (in my case from G-K) now could contact everyone else. The PATIENTS. Not doctors. Cancer patients were outted to each other.

- The message included a png of a goodbye letter my doctor had written. It was near impossible to read on mobile and god help anyone who is visually impaired since that is not an accessible way to send a message.

Having all of this in one week led to my first meltdown in a while. I made a rule going forward that we  do not have plans the night of an appointment because we had an artist here that night and I barely had it in me to be upright.

The other big news is that finally, I can go off the tamoxifen...except now I'll be on an aromatase inhibitor. People tolerate these all differently (bodies are weird) but here's to hoping that I can handle anastrozole better than its predecessor. This may be the resurrection of the blog while I work through the side effects. I start it once I can figure out what my baseline pain levels are post-tamoxifen (probably in about a week).