What a week, right?
Happy that we have President-Elect Biden and Vice President-Elect Harris (whether DJT is willing to admit it or not). But, man, what a week, right? If any of you were wondering what scanxiety feels like...it feels like what Wed-Fri did.
On Monday, I had my appointment for my first infusion scheduled for Friday....hooray for quick insurance approvals. It's nice to have a plan.
After I left the doctor on Friday, I had additional questions I hadn't thought of at the time (of course...) that I sent through the medical portal and got answered by a phone call with my onc on Monday.
- Can I get treatments in California to allow my Escape Ohio plan?
- Yes, if we can figure it out (more on that later)
- Will we put a port back in?
- For now, no. I've got good veins so we'll see how that goes/lasts.
- How many rounds?
- We'll probably rescan after 2 or 3 months. I should expect at least 4 round to begin with
Starting Monday, Ms. Barbara Crecelius, my amazing personal assistant, with the help of Karyn, started looking into treatment options in California. I hate phonecalls, so this was an amazing help! After a few different avenues over a few days, we ended up having my records sent to Stanford's Breast Cancer Center. I'll try to have a telehealth appointment before Thanksgiving to establish care, which then would allow me to get infusions while I'm there. Understandably, for chemo infusions, they won't just take an order from out of state doctor, but I need to have a provider there. If I can't do the telehealth, I'll still try to set up an in person appointment, even if I have to go back home for infusions in December.
A lot of people ask about second opinions, but that isn't really my primary reason for seeking the addition to the care team. Firstly, I would enjoy staying out there, so it allows me to potentially do that. But more importantly, and I really have to thank Karyn for pointing this out, it gives me more options for care in places where I have strong support systems. With both Karyn and Sarah and their families there, if I want to take a long vacation, or the reality of things getting worse at some point, it allows me to have some continuity of care. Plus, just happens to be at a world-class specialized breast cancer clinic, that's only about 20-30 minutes from both of their houses. So why not?
It's still a work in progress to get things set up, but that ball is rolling.
There were a few "sharings" this week at work. I told the students in my lab, my department, etc. It's a strange "update" to provide, for sure. People don't know what to say. I get it. I get a lot of the "you're so strong, if anyone can beat it, it's you" "you'll beat it". It's appreciated. But it's not really true. Barring a freak accident, this disease will kill me. It hopefully won't be soon, but that's the truth of metastatic breast cancer. So, the pragmatic approach of figuring out worst-case scenarios is actually more comforting to me. But I appreciate the sentiment behind the "fighter mentality" good words. Same goes with the prayers. Not totally my bag, but appreciated.
Being a veteran to the infusion chemo world made the whole process a little different. It almost felt like a regular appointment...no major prep, nothing too different. I took an afternoon appointment so I could keep a morning dentist appointment (non emergent dental work isn't recommended while on chemo, so was good timing). A few advising appointments after and it was off to my first round. Quick stop at the in office pharmacy to pick up anti-nausea meds and then picked a chair.
Obligatory selfie!
The nurse wasn't the one I had last time (she's now in management) but she was there 5 years ago and remembered me. Kind of comforting actually.
Quick stick for the IV. Blood draw for labs. This will be more important in the future (when counts will drop...this is how they make sure I can 'handle' it). Then a pre-treatment steroid. I didn't realize I was getting this, but it's helpful to handle the treatment and keeps you feeling pretty good, particularly that first day. I read back through old posts this weekend and was reminded of that. As the steroid wears off, the fatigue can set in a bit more.
No red devil...more like milk
After the 20 minute steroid, on to the 'good' stuff. The abraxane kind of looks like milk. Couldn't feel anything, no reactions, etc. Pretty easy. Probably the most annoying thing was that since I don't have a port I was a little less functional while trying to entertain myself and then join in on a Zoom call for work.
Kept the video off to not scare folks with IV poles and masks :)
Technology is pretty cool though and it was kind of nice to have the distraction. I finished infusion before the meeting ended actually, so even was able to jump on with video from home.
I took it pretty easy Friday night, though that isn't too unusual! Saturday, met up with Elizabeth for coffee and a walk. Decided to be conservative and not try to jog, just walked. Been feeling pretty good all weekend really. Played tennis today, doubles, and kind of slow, but felt pretty good. I maybe slept more today than usual?? Again, I'm no stranger to lazy weekends, so hard to say. Thankfully no other side effects, GI, or otherwise yet. But it's just the start, so cautiously optimistic.
Rereading old blog posts reminded me of this book that I had gotten:
Memoir via comics.
Since it was a GORGEOUS weekend (70 in November in Ohio?! What?!) I reread it outside. And unfortunately, I'm going to be passing it along to a friend of a friend that unfortunately just found out she is metastatic now also. Hopefully the levity it provides can be some sort of relief to the craziness that is going through this shitty diagnosis and disease.
