Saturday, December 11, 2010

This wasn't totally unexpected.

My mouth is still healing. This shouldn't be a surprise to anybody who's had surgery, or who's seen surgery on mobile, thin-skinned bits of the body: things tend to heal slowly when they're either constantly in motion or regularly abused, and a mouth is both. It looks a hell of a lot better than it used to, true, but there are bits that have to be...well, frankly, there's some scarring along the right side of my jaw, internally, that I'm not crazy about. It makes opening my mouth hard; more than that, every time I wedge the tongue depressors in there to stretch, it tears the tissue a bit.

So it's a bit of a struggle.

And, of course, it's making me paranoid as hell.

Occasionally tasting blood, or feeling new soreness here and there as bits of slough finally peel away, makes me certain that I've got some sort of horrible and heretofore-unknown variant of PLGA that's going to fill my entire head. The obturator makes me bite my tongue now and then, but that's not a bitten tongue I'm feeling--oh, no. It's an unusually malignant form of squamous cell carcinoma.

And those lumps where they dissected down to the foundations of the right side of my head? Aren't the normal contours of the fat and muscle and so on, covered by a thin layer of mucous membrane: they're killer manifestations of HPV that are eating me alive. The white stuff at the back right-hand side of my throat isn't scar tissue: it's Something Awful.

In a way, the paranoia is a good sign. It means that I'm no longer so miserable from the horror of diagnosis and the exhaustion of surgery that I don't have an imagination. I've been here before, to a lesser extent, when I've had stuff like pneumonia or a bladder infection or a galloping sinus infection. It's when you start to be really well that you fear you're getting worse again.

It's tiring, though, and it makes me wonder how long this'll continue to happen. I know that at some point, every single thing I do won't be somehow tinged with Perhaps This Will Predispose Me To Another Cancer or Will This Make My DNA Break? The glass of wine I had with dinner last night won't loom large as something that causes nasty things to grow, and I'll eat bacon or salami without thinking twice. Maybe it'll be five years from now, or ten, but it'll eventually happen.

In the meantime, I'll just keep telling myself that my immune system is nice and healthy, as evidenced by my recent state of health, that PLGA has no known risk factors, that I'm perfectly okay and will continue to be perfectly okay.

And I'll try not to panic like I did last night, when I forgot that I'd eaten a brownie for dessert. I flipped out when my mouth rinse brought out dark brown slough.



messymimi said...

Remember, this will help you be more understanding with your patients when they go through such stuff.

It will be okay. Anyone who has ever been sick has been here.

E said...

Oh head nurse, your imagination is wild! It made me giggle a little bit at first because, and trust me on this one, everyone is exactly the same, paranoid as hell. The burden is that you know too much, you've seen the worst in other people and you fear the same will happen to you, and you wish you could just switch off and be a normal patient in recovery, right? I'm guessing so.

In all seriousness, when I had 2 x melanoma in situ(s?) removed from my back in less than 2 years, it made me paranoid as hell too. I had massive scars from both incisions and although I had the all clear soon after each one the healing for both incisions was an up-hill struggle and for someone the dermatology labels as "moley" it was difficult, extremely difficult to move on. Is that mole on my neck changing? Why do my glands feel so swollen? Am I missing a mole somewhere that right at this minute is mutating into a melanoma from hell? I'm 22 years old, am I going to die from stage IIII melanoma in my 20's without ever truly living my life? My auntie did, in her early 30's from the same disease, it's possible but I can't live thinking like that. I've been fine for years now.

In some aspects, it never leaves you. You just learn to deal with the imagination and paranoia a bit better, particually as time progresses and your recovery becomes less problematic.

I know your much worse off than I am, but we're all the same, we've got the same imaginations and fears and no amount of reassurance otherwise is going to take away those fears straight away, it takes time.

Take care!

Anonymous said...

Just read a couple of great books, more or less about cancer but nothing scary to a nurse. One is Henrietta Lacks. Her cells from her cancer, way back in 1951, were the basis for cellular research and because of her we have the polio vaccine just for starters. The other is The Emperor of All Maladies: A Biography of Cancer. I am not recommending these as something that will make you feel better but as books I found fascinating for understanding things. Henrietta Lacks is coming out as a movie next year.

You are working your way through all this beautifully, and that is the only way. You sure can't work around it.


Silliyak said...

A touch of PTSD perhaps?

Kirstin said...

I have stage IV melanoma in my lungs and chest wall, and soft tissue nodules here and there (three that I can touch). I've been known to say to myself, "That's not a tumor; that's your wristbone."

Facepalm indeed.

Lurkette said...

Another post I could have written (if I were as talented as you).

The thing is - I'm still in that place. Of course, our situations are different. For one thing, you are cancer free. Cancer free. How delicious those words taste!

I don't have anything encouraging to say this time, but I want to thank you for reminding me that what I feel is normal and common.

(WV is "proche", which of course is French for "close", which is how I feel to you after reading many of your posts.)

Anonymous said...

Staying the Executioner.

Describes the feeling to me exactly, if my husband had a belly ache, a fever, a cold, each of his CT scans for surveillance of his colon CA. At age 26.

Celeste said...

There's a chance that you'll look back on The Brownie Incident and laugh...I hope it's a good chance!

I'm really hopeful that as the bodily healing continues, the mental healing will follow. I hope the Thera-Biting will make the jaw scar tissue come out right. It sounds very difficult to cope with.

But I love that brownies are back in your life!!

Anonymous said...

Two commetns I heard in my early PBT (post brain tumor) days popped into my mind when I read this.

1: A pathologist friend, who said, Well you know, we pathologists don't have headaches; we have brain tumors!

So just maybe your superior knowledge is not working to your advantage just now?

2: My internist said, Well, since we don't have any idea what causes these things, there is no point in changing your life.

I was grateful to him for not being the doctor who could have said, well, since we don't know what causes these, better change everything just in case.

I say, enjoy the wine brownies & learn to love those new experiences!

Anonymous said...

The universal thing about anxiety is that we don't think about how good things are, but how bad they might be.