Amen to all that.

Christine is right! (She's a variant of a Kristen too, remember, so she has the stubborn patience to keep us all on track with our nutrition and make us be safe with our recoveries!!!)

And yeah, my thyroid went out too. My radiation doctor had the nerve to blame it on me, as if he thought I was going to try to blame it on him and he wanted to get there first. He said it wouldn't have happened if my thyroid hadn't been weak to start with ... I highly doubt that, but whatever, done is done. And it did impact energy levels a lot. I don't see a ton of improvement on the meds ... but I sure see a problem when I miss the meds! My B12 plummeted too, but that we think was related to another issue. So I get shots for that.

Kristen, you asked about my first and second diagnoses. The first one was May of whatever year that was, 2013 I think. It had taken all year for the doctors to figure out whatever it was, wasn't gonna heal, so the ENT said, "Let's do surgery, give it a fresh start to heal." Not sure if he was already thinking cancer but not telling us, or if he didn't know either. But he did have the sense to have it biopsied during the surgery while I was still out, so he was able to keep going and get clear margins ... and it took him several tries. I woke up to a lot less tongue than I'd expected, and the news that it was cancer ... which had NOT crossed our minds till that very minute.

However, we were pretty sure he'd gotten it all. He still wanted to do a neck dissection to check for lymph node spread, even though it wasn't indicated on any tests or scans. Not knowing better, I consented to it, and that was in August. All was clear. In December, a sore came back in pretty much the same spot we'd first operated on. Recurrence already. (I do still think he got all of it the first time, and it really was a recurrence. My mother is inclined to blame the surgeon for missing something. But we're talking dinky tiny cells, and blame in that case is futile.) So we did more surgery, and then all the doctors got together and decided chemo and radiation were the way to go, because that quick a recurrence can't possibly be a good thing. And I was scared, and there we were, and .... here I am. I still have more tongue left than some folks have after even one go-around, so I'm lucky in that regard, but the fatigue is still very real, and I still have to pace myself carefully.

Which is why I cheer you on to do things, but TOTALLY second everything Christine and others say about also not getting too ahead of yourself, because this stuff sneaks up and smacks us when we're not looking. We fall, we rest, we pick ourselves up and keep going. I was dealing with chronic health issues for over ten years before the cancer, so I'm used to being knocked on my butt and having to reset my expectations, though not to this level of severity (I was actually getting better before the cancer, sigh), but hopefully it's not something everybody already has life experience in. frown

Hope that was coherent. After midnight on a migraine day, but it's probably pretty close. smile

Last edited by KristenS; 07-21-2018 11:15 PM.

Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery