Hello – Quick Update about the last 6 months

I realize it has been a while since my last update. Was it really in November? Yes, I guess it was (I looked back at the date of my last posted update).

Let’s see. What has happened since November? Well a lot really, but some of it is not my story to tell, let me just say it has kept me busy.

As for me, I enjoyed my hiatus from treatment, but as we know, it was just a temporary hiatus.

I had scans in February. They were ambiguous. Which sent me to have a PET scan to determine if the ambiguity was in the reading or if any activity may be better seen and picked up with the PET.

The PET scan also came back ambiguous. [Insert sarcastic shocked face here.]

An unexpected (are they ever really expected, sometimes yes, sometimes no) area lit up on the PET scan which sent me down a crazy ride.

My lower right jaw lit up on the PET scan. I tried to convince the doctor it was just an infected area of bone growth my dentist had noticed. I already had an appointment with an oral surgeon to discuss what was going on.

As most good oncologists do, he wanted me to have it further looked at by an ENT. Just to make sure.

My dentist had referred me to an oral surgeon who believed it was osteonecrosis of the jaw, basically, bone cells that die and poke through your gum – it is amazing the vocabulary you learn when you are a cancer patient. He also suggested I see an ENT.

All roads lead to a visit with an ENT

My ENT appointment didn’t go as planned (yeah, I know, another shocked face emoji). The doctor I saw took one look in my jaw and told me that was not his specialty, but he knew a guy. In fact, the guy was his partner. He told me to wait there, and he would send in his partner to take a look. I ABSOLUTELY love a doctor who admits when something is not their expertise.

More discussion, more open your mouth wide. And then, let’s do surgery and send it off to pathology – you know, just in case.

Oh yeah, in the meantime, after several discussions, my oncologist and I came up with a new treatment plan. We agreed to give Xeloda a try again. If you don’t remember, I was on Xeloda for 7 years previously, but that was three years ago. Some research has shown that drugs can be effective again after a break. He agreed to try it again (maybe someday I will have my picture in a medical journal). So in February, after a short hiatus from medications, I started back on Xeloda.

And now for the rest of the story

After a few false starts, I finally had the surgery to remove the bone in my lower jaw on May 3rd. Due to the type of procedure done, I was on a liquid diet until he could schedule the follow-up surgery (I will spare you the details on that, just know there was no way to chew food).

As my luck would have it, I had my surgery at Ascension Seton in Austin. When I returned to the doctor the following week for my follow-up visit, and to get the results from the biopsy, I learned the Ascension systems had been hijacked. No biopsy results were available, and they weren’t scheduling any follow-up surgeries.

What I originally thought would be a 3-week liquid diet was now a 4-week liquid diet and the follow-up surgery was being performed at a different location (honestly, this second surgery was a breeze with their processes).

It wasn’t until this past Tuesday (June 18th for the record), that I finally got the biopsy results.

Good news! It was not cancer! It was, in fact, osteonecrosis. Thank you to Aredia (unknown number of doses when I was first diagnosed with metastatic breast cancer) and the one dose of Zometa that I had last year which has the unfortunate POTENTIAL side effect of osteonecrosis of the jaw.

So there you have it. I am currently on Xeloda. I had scans again last week and everything is stable. My jaw is healing nicely. Still a few stitches that annoy me but will dissolve soon enough and I can eat solid foods again.

Even with the two surgeries, 2024 is still better than 2023. Hope it continues. Until next time, if you see me out in the wild, say hello. I love to meet and see the people who are reading my story.