What I know & living with uncertainty

Life is uncertain. In the middle of a pandemic it is even more uncertain and at times unstable or worse. My uncertainty is not unique, and I'm trying to live with it and embrace it. Sometimes that requires pretzel chips, sour cream and beer. Sometimes it requires breathing mindfully and always riding the waves, where I change what I can and accept what I cannot (and try to figure out which is which). 

So here is what I know, based on my local (Cincinnati) oncologist. The CD made it from DF to Christ and a comparison was made between pre and post treatment images. It looks like there are some cancerous lesions on four vertebrae (mostly thoracic and one cervical), and the lesion on my hip has grown a couple millimeters. This is not the stability we were looking for on this suite of drugs. I'm disappointed, concerned, and ready to figure out the next steps to beat this back. The Cincinnati oncologist recommends sticking with the palbociclib/Ibrance (targeted chemotherapy/CDK4/6 inhibitor) and switching from the aromatase inhibitor which inhibits estrogen production (letrozole/femara) to an estrogen receptor antagonist called fulvestrant/Faslodex. This is a common next line recommendation. I also asked if we could try to switch from Zometa to Xgeva, both strengthen bones and may help stop progression but the latter was denied by insurance unless there was progression or kidney damage (check on the former, none on the latter). There's some evidence Xgeva works a little better with fewer side effects, and it's a shot versus an IV infusion, so that's somewhat more convenient. I also asked about testing the current cancer cells for receptors and possibly genetics if they can rationalize to insurance to check for changes/mutations, i.e. there's no point in continuing on an estrogen strategy if the cancer cells aren't estrogen driven anymore. He said we could probably do that if there was a way to get at those cells. I recommended the very convenient catheter to my pleural space. And by convenient I mean for accessing cells, because it sure ain't convenient for anything else lol.

What I'm waiting for is an opinion from the Dana Farber oncologist, Dr. Heather Parsons. Ideally the CD from images taken here in Cincinnati would have made it to DF and I would have met with her Friday afternoon. There was lots of messaging and calling and some false hope. Basically a little roller coaster, where in the end, there was no meeting because the CD didn't make it. Dr. Parsons is out until the 22nd, but I do have an appointment scheduled for then and I'm to continue on my current treatment plan.Why wait? When I moved Dana Farber asked if I wanted to join the EMBRACE program, which has both a support and a research component. Research? Yes, please. Part of that is not switching treatments without a consult, as they think that order matters. Plus, I value her opinion and well, stabilizing the cancer's spread is my goal, and it's worth the wait. So. We wait.

What else? We bought a house! Well, almost...closing on April 9th. It's on the west end of Anderson, which has pluses and minuses in terms of being close to people. We will be further from my sister, Shelley and her family, but closer to my parents and some friends (moving further from other friends). The market is tiiight. 

 I'm looking forward to building some raised beds and getting some veggies into the backyard, hoping to start some of them this weekend or next at the latest. Hermes would be very excited about the yard if we could explain it to him properly :-) There is a deck and a porch- essential not just during COVID times.

We are about two weeks into classes, and it's going pretty well. We're having good conversations about viruses and the human gut microbiome. No one seems concerned about ungrading, and I've had few questions (which can be good or bad, really). More to come as we work through this. Great participation so far in those classes.  We are getting set to start doing some measurements and conversions in introductory lab next week, more exciting things to come after that. It's a somewhat rockier start there in terms of getting everyone on board and set, but we have a bit more to juggle in that class. More to come! 

For some reason I can't figure out how to respond to comments below, but know I read and appreciate them. Take care of yourselves! ~Amy B.

Comments

Rachel said…
Continued prayers
Helene said…
Thanks for sharing your journey. Thinking of you and sending love and virtual hugs. Congratulations on the new home.
Matt said…
Amy, your continuing to fight through is amazing and I'm happy to hear that your classes are going so well! I find that I am in a timewarp some times and feel like I get lost in my own thoughts because of this difference but that's great that you are doing great on that end!

Keep fightin' the good fight!

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