Hey there! Just now responding to your first post because, well, it took me back to how I first felt when I first learned I had cancer. (The first time.)

We didn't even know it was a possibility, actually. I had a sore that wouldn't heal; several doctors did their thing and it still didn't heal, and so the ENT said, "You know, some sores just don't heal till you cut them out and give them a fresh start." As this was several months in, we figured it was worth a try, and agreed. Came out of that surgery (which I guess we could rename a really big biopsy) with a diagnosis of cancer. Except he got enough of it that it was also the cancer removal surgery (I had a lot less tongue after that!) and he'd worked super-hard to get clear margins. I think he must have suspected, but didn't want to scare us until he had to.

The scary stuff came after ... talking to all the specialist. We were sent to speak to a medical oncologist (the chemo guy) who gave us all the worst-case-scenario terrors from his perspective, and I think even a radiation oncologist who scared us with all his stuff. And back to the ENT who wanted to to a neck dissection on that side to check lymph nodes, even though the scans were showing clear ... just to make sure they'd really gotten it all. This took place over several months, because he really DID do a thorough surgery ... my worries got me to a doctor first in February of that year, the surgery was May, and the neck dissection didn't even happen till August. NONE of the other treatments the other doctors tried to terrify me with happened at all. They were telling me what MIGHT happen, not what WOULD happen for my treatment plan.

That round, I got lucky. (Though I still rather regretted the neck dissection.) However, by December I had a recurrence. So all that scary information turned out to be useful. It also helped weed out which doctors I wanted to see. laugh The ones who said "It has to be this way, and this way only" and had no compassion at all ... I struck them off my list right away. I didn't care what other folks thought their success rates were (unless they had firsthand experience, not just gossip), because I have fairly complex medical issues as it is, and I require a doctor who will listen. We'd already winnowed out several of those that wouldn't!

And you know what? That stuff you think you couldn't possibly bear to go through, the first time you learn about it? It's amazing how your mind can change when this stuff comes BACK to scare you. Yes, it totally stinks to have to go through it at all. It's horrid, and there's not a nice word in the dictionary to describe it, except for at the end when you can say it's "over!".

But you're HERE to go through it, and you've got lots of folks who will help cheer you on, tell you when you are allowed to fuss more (yes, it's okay to ask for more pain meds if you need them, stuff like that!), remind you to ask for help and second opinions, and all those other things that we need reminding it's okay to do. And like someone else said ... The Cancer WILL kill you, eventually (and it will hurt way worse than the treatments). The treatments feel like they're trying their darnedest, but they are also trying to save your life. You're the one who has to decide if that life is worth saving. Me, I had two young kids (now two teenagers). Being there for them seemed the right choice. I'm not the mom they would have had without cancer, and we all grieve that ... but it's better than no mom at all. Yes, you're allowed to grieve the changes you go through. But YOU are still worth it.


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