Sunday, November 14, 2010

From the mailbag: How's stuff work now?

Faithful Minon Aiden has an excellent question, via email: How do things work now, as far as swallowing and breathing go, since your soft palate is gone? What else is different after surgery?

Gracious. Where do I start?

Let's start with airway and breathing, since those are always your first two concerns. My airway is basically unchanged with one exception: I can no longer block my oropharynx off from my mouth. What that means in practice is that if I lean over without the obturator in, saliva drains from my nostrils. I also have to be careful with swallowing without the obturator in, because it's much easier for liquids and semisolids to enter my sinuses.

I cannot suck on a straw unless I hold my nose. Likewise, I can't blow out candles or blow up a balloon without holding my nose. Whether or not that will change as the obturator situation changes, I don't know. Suffice to say that for now, I have no suction capability and no blowing capability.

Aside from those minor concerns, and the fact that carbonation bubbles head straight into my sinuses, things are pretty much unchanged.

Swallowing is a little different. I prefer to eat with the obturator out for two reasons: it's easier to swallow neatly (ie, without stuff getting stuck up on top of the obturator) and quickly, and I choke less. With the obturator in, I can eat and drink fine--don't get me wrong--but it takes considerably more concentration than it used to.

It almost feels normal now to take a small mouthful of fluid and turn it into four or five swallows. I can no longer gulp liquids. Shots are right out; each ounce of liquid that I swallow equals six to eight separate swallow cycles.

I miss that first gulp of cold Perrier Citron that would make the back of my throat burn. Otherwise, no big deal.

I have a very hard time lying either on my front or my back with the obturator in; soft tissue tends to collapse around it and obstruct my breathing or trigger my gag reflex. The answer to that is, if I'm getting a massage (say) to lie however and just breathe through my mouth. It's snorey, but it works.

One of the most common side effects of a transoral surgery, and the one that concerns me most right now, is trismus, or jaw stiffening. I have a minor case of trismus, which is defined clinically as not being able to open wide enough to insert two fingers between your front teeth. Mine is classical in that the sensory portion of my right trigeminal nerve (CN5) is also affected. What that means is that I have a beard-like distribution of numbness from just in front of my ear to about halfway across my chin. The right side of my lower lip is numb, as are my teeth and jawbones on that side.

Simply put, when I'm brushing my teeth, I have to look carefully at what I'm brushing to make sure I'm not brushing the top of my newly-enlarged mouth. I can't feel a darn thing.

Eventually, with enough jaw stretches and enough time, both mobility and sensation will come back. In the meantime, what this means practically is that I don't eat in public and I stretch my jaws six or seven times a day, whether with fingers or stacked tongue depressors.

There's also some tongue numbness left thanks to the fact that my tongue was retracted during surgery. Imagine Bill The Cat--that's apparently what I looked like. Only the tip of my tongue is numb now, thank God, because before (when it was most of my tongue) it was a pain.

Overall, I have been incredibly lucky. Because everything was cauterized during surgery, the post-surgical pain was actually less than came with the original biopsy. I have the occasional ache where they removed the one tooth, and of course I wear out quickly trying to talk. Aside from those problems, though, and a pretty constant jaw-ache, I'm quite comfortable.

And, since I don't look any different, I have a lot less to deal with than I would've if I'd had an open neck dissection.

So, yeah. That's how stuff works now, or doesn't. The "doesn't work" column will have to be updated nearly continuously over the next year as the obturators change. We'll see what happens with the next fitting, two weeks from now.


bobbie said...

You are so amazing ~

strong, resilient, funny, honest

You have my utmost respect.

messymimi said...

Thanks for a concise and easy to understand explanation.

Silliyak said...


scott lawrence said...


Stumbled upon your site and was tripped out by the fact that this has all happened in the last two months. It's crazy, because I've been through similar over the last two months (check my site for more).

I found out I had stage IVa tongue cancer on August 10, had my tongue out on September 15 and today started chemo/rads because of one tainted lymph node.

Enough about me, let's talk about you... Seriously, I'm interested in your story and think you might dig hearing about other people's experiences with similar.

If you've got any questions or just want to talk about this crap, drop me an email.

Best wishes for an as-close-to-normal life as you can have!


Elyse said...

I can't get the picture of the cat and the obTurator out of my mind with your kitty's green eyes and that bit of metal placed in such a way as to make it unclear whether it's part of the cat's mouth or not. It's oddly compelling - perhaps the eyes reminding me a little of something you are no doubt familiar with as a neuro nurse - Gar - the Brain From Planet Arous, of course.
But all of that is really a preface to a question. Will you save all your obTurators? Can you line them all up at some point and make some sort of crazy train hooking their metal hookie things to each other? Or do you have to turn in the old ones for recycling? If they want the old one back make up some sort of excuse if it were me.

Lioness said...

Blimey, when did this happen?? Have I not visited in a really long time?? I'm glad you're doing alright now, will read more to find out why.

Lioness said...

Seriously, where have I been?? I wasn't blogging for 8 months and not really checking blogs properly either, but it's shocking to see how much a person's life can change in 2 months. Hell, overnight really. This is a 2nd take, btw, I wrote a book the first time, Blogger got pissy and I lost it all.

Look, I too would feel like a poseur but the truth is, you're not. You had fucking cancer, and as a result your life will never be the same again, that line was crossed. You were shown a future that was horrific, you prepared for facial paralysis, radiation, loss of hair, scarring, it doesn't matter that it didn't come to be (baruch hashem!), it matters only that it almost was you. So you're entitled to feel whatever it is that you feel, someone else will always have lost their hair and ability to properly use their face, but someone else will also always have lost less mouth than you. (And what do THEY have to complain about, huh?) This is what did happen to YOU. And you're to be commended for not smacking The Facers, I only know them from the other perspective (mum had breast cancer), the OMG YOU'RE AN INSTANT ORPHAN one, but it was very hard not to hurt them. Or be rude, at the very least.

Also, re Indian men - STAY AYAY! It's a very unbiased opinion and not due to personal trauma at all.

Urbie said...

So what you're saying is, if you were a tuba player, you could still play the tuba -- you'd just have to put a clip on your nose. Am I reading that right? :-D