Hello, world! It’s been a busy week already and we’re trying to get back into the swing of things after a long time away from home.
So I showered today. I know what you’re thinking – “p-uuuuu!” (is there a proper way to spell that?). But nope, I’m not stinky – I actually showered instead of taking a bath. Yeah! Some of our travels didn’t have baths so a shower was required. It’s been months since I’ve showered because of radiation burns and though I still have one open wound and it was a bit painful in the shower, it was awesome. The ability the wash my own hair, stand in the steamed up shower and feel the warm water drip down my back…oh, so wonderful.
Oh, and my port can now be used!! This is SO awesome too! No more arm pokes. 😊
My radiation oncologist (RO) thinks my wound may be healed within about 2 weeks! Say, what?! I know that’s wishful thinking but the idea that I won’t have to change bandages every 3 hours, have to apply a special lotion every night and have consistent pain in the center of my chest…well, that’s quite exciting. We’ll see – but that’s what I’m aiming for! And being healed means that I will finally be able to have surgery and that also means that I’ll be able to have MRIs. All of these things are actually super exciting!
I also saw the neurosurgeon, who reviewed my actual brain scans and agreed that everything looks stable, which is also great news to hear. I’ll take that!
Today I saw my oncologist and we had a long discussion about treatment. We discussed an old school standard triple negative chemo treatment called CMF, which is an option and appears to be quite tolerable and effective, however it is IV chemo.
Afinitor is still an option but he is not entirely sure that I’d be able to get it covered by insurance, which is a whole other story. Since internally everything appears to be fine (if not better), it makes sense to continue Xeloda until I have internal progression or my skin nodules become larger, concerning or unbearable. My blood was drawn today and I’ll have my tumor markers in a few days. I am anxious for that, as they have been a pretty good indicator of whether or not I have internal progression. Aside from that I am on the low end of normal blood numbers but still within the good range for chemo. I am slightly anemic…anyone have a home trick to get that number up, aside from eating red meat?
In the meantime, I have spoken with the oncologists at the Mayo Clinic and MD Anderson, both who agreed that continuing Xeloda is the best course of action for now. MD Anderson discussed that while I have progression, it isn’t significant enough to stop treatment yet. Aside from discussing Xeloda, the Mayo Clinic actually has a Phase 2 trial for the same drug that MD Anderson & Emory are testing. Apparently that drug is the hot topic right now! 😉 She has the same concern regarding measurable disease causing me to be ineligible for now.
As my local oncologist referred to it, I am “treading water” for now. I’ll continue Xeloda, have scans every 6 weeks to ensure that nothing is missed and *hopefully* in a year or 5 from now, I’ll still be treading this water and staying on the current course. For now, it feels right and hopefully it will stay that way for a long time!
Have a wonderful Wednesday night, everyone! 💚