I’ve had a lot of inquiries about how things are going – I just wanted share a quick chat I had with my friend Amy that would give everyone an overview of where I am as I await a further discussion with my oncology team about the pathological findings of my mastectomy and lymph dissection. It’s hard to write about this right now as I don’t have a lot of information right now, and the information I have is very technical – I almost wish I could just upload the pathology report here but I don’t know how. I feel great, physically, no pain just some fluid retention around my lymph area on the left. If I didn’t have a drain still in my chest and doctors precautions I’d feel fine to go out and ride my horse today. But, I won’t. Anyway, this will give folks who’ve been wondering a chance to know some of what’s going on in my body and mind.:
Checking in to see how you’re doing? Amy
Waiting around wondering if anyone from oncology is going to call me. I got most of my pathology from the plastic surgeon and it looks fairly ominous in terms of the fact that there’s a large lymph node tumor that apparently didn’t respond at all to chemo and multiple sites of invasive cancer in the breast tissue as well. There was some cell death, or necrosis, but a lot of activity was still going on. Not sure what they’ll decide is next but the plastics doc said he’d be surprised if I didn’t have more chemo. I researched that a bit and woo-wee this is experiment world…it is going to be a challenge to decide what to do I don’t want to face the end of life as a human guinea pig but I am willing to try some additional treatment if they think it will help and the side effects aren’t horrible. But I really want to be able to enjoy life as much as possible. So that’s important too. I’m going to inquire about clinical trials too. But talk about feeling like a human lab rat. I’m okay though, it’s just a surreal time. Hope you’re well. Hugs, Sandra
So they are saying it’s spread to a lymph node that they did not remove in the surgery? They hope to treat that with more chemo but not sure what kind to use? Amy
No the lymph nodes were removed. It’s just that I don’t have a “complete pathologic response” and really don’t have much of a response at all – which means there are likely cancer cells floating around my bloodstream looking for places to land so they will want to treat my body again systemically. My type of BC has a very high rate of recurrence and generally recurs at stage 4 often in visceral tissue like the brain or pancreas. That is why the survival rate is low. The big new progress they made with TNBC is doing the type of chemo I had pre-surgery to kill the tumors…and in my case, which is supposedly very rare, it didn’t work. Me
oh shit. Ok. that explains a lot. Amy
I don’t really have answers to questions though and the research I’ve done is nothing if not completely complicated with medical lingo – there’s a lot of research on this type of cancer because it is the one for which there’s no targeted treatments – but when you read the studies it’s like “oh this was a great study because 27% of the patients enrolled lived 2.5 months longer without disease progression…etc. Me
reading may not be the best idea but I am the type who does that too. Amy
I just was trying to see if there were any options for refractory or chemo resistant TNBC. And of course people who’ve had it are telling me all this stuff about new treatments. Sandra
I am sorry honey. I can’t imagine how scared you must be feeling right now. Amy
I actually read very little about cancer. But I want to work on accepting what is happening and making good decisions for myself. I certainly won’t give up but I also want to die well, when I die. Hopefully not soon but it’s out of my control. Sandra
well, the road ahead is indeed tough but I and many others are here rooting for you. Erik wants to come back over and do more to help you out. Maybe we can come this weekend for another visit if you are up to it. Amy
Thank you, and him. He is such a good empathic man, not that common! I will let you know as the weekend approaches. I’m super pissy because I can’t drive because my stupid second drain is still in – I’m close to not complying with medical advice because it doesn’t seem that important right now. And I want to do more things.
I really appreciate all the support and love – but then that also makes me sad because I don’t want to disappoint people if somehow I don’t end up being one of those miraculous recovery people! Hopefully I will. I don’t feel like my body is sick or ready to die. And yet I apparently am sick.
Honestly it feels a lot like I’m in a dream right now. Sandra
Seen 10:33am
Chat Conversation End
Type a message…
•