We decided to take a couple of days to just be angry and upset and ….. GRRRR….Argh!
We’re not sharing the Duke experience outside of CaringBridge, yet. It will be briefly mentioned that we did go to Duke in the timeline on Teresa’s blog, but that’s all.
We don’t want to turn any potential hospitals/surgeons away from helping us, and going forward, I’ll be requesting that surgeons let us know their decision over the phone or, preferably, in email, rather than making us take a long drive to tell us no.
We are going to be contacting a surgeon in Buffalo whom we saw in February who said he would reconsider in a different situation — which we’re in now. I drafted an email last night, and we’re going to polish that up and send it off this weekend so he’ll have it in his inbox come Monday morning.
Thanks to the genius of Teresa’s dear friend Maria, and my Mom, we’ve got another plan for if the Buffalo surgeon declines our request. We’ll explain it in more detail once we’ve got it all fleshed out. We may need some brainstorming help from you all!
For the question about immunotherapy, yes, we know about it. Teresa’s Foundation Medicine test came back that she would have 0% response to immunotherapy drugs like Keytruda, but we’ve read posts by/about people who got the same result and still did great on Keytruda. And then there’s other things like CAR-T therapy, but it is not yet approved for leiomyosarcoma.
It is possible in some instances to get compassionate release on drugs, but Teresa really wants to get most or all of her tumors out before trying any more chemo, if at all possible.
Medical-updates aside, anyone want to come visit? We know it’s short notice, but this is the soonest we are able to post and tell you all this. If you’ve been wanting to visit (or re-visit) Teresa, this weekend is a great opportunity for that!
Back pain from the weight of the tumors aside, she’s feeling pretty good, and she absolutely loves company!
If driving long distances is difficult for you, and if you don’t like to fly, Amtrak has a station in Roanoke!
The only thing we ask is that if you or anyone in your immediate household (or someone you share an office with) is sick, or if you’ve had a live vaccine w/in the last 6 weeks, you call instead of visiting in person. Teresa will be thrilled to speak with you on the phone! If the surgeon in Buffalo says next week that he’ll take her on, we’d hate to have to pass because Teresa caught something at the last minute. I’m sure you all can understand! We all want Teresa to get better!
(Please note that we are currently unable to host anyone in the house for sleeping purposes, but can recommend a variety of nearby hotels in a range of prices.)
She also has a new post to share with you, about her favorite things and what she enjoys doing, which you can find here: http://teresa.grableronline.com/a-few-of-my-favorite-things/
She would really love to have more people reading (and responding to) her blog! It often takes her a long time to do each post. Hearing from you all in the comments over there means a lot.