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Jay Lake
Date: 2013-03-28 05:27
Subject: [cancer] Crashing over skin issues
Security: Public
Tags:cancer, health. personal, jerseygirl, radiantlisa
Last night I had an emotional wipeout. Not a full-scale screaming-and-tears meltdown, but mostly only because I was too tired to pitch a fit. I was certainly depressed and upset enough to have done so.

Jersey Girl in Portland had come over to eat dinner with me and Lisa Costello, and trim my hair. The issue with my hair is that the skin disruptions from my Vectibix are particularly annoying on my scalp, where they are intersecting badly with the hair follicles and hair oil. It's too late to shave me bald — I'd be a bloody mess from that close a trim — but we can take the clippers and buzz me pretty close without too much disruption. Likewise my facial hair, which I can buzz down but not shave skin smooth.

My skin, after all, is no longer smooth.

Put simply, thanks to the drug side effects, I have worse acne now than I ever did even deep in my difficult teen years. Pimples, whiteheads, the occasional blackhead, rashes, dry spots, mysterious little scabs, chapped lips. If you can name a skin condition, I probably have a version of it somewhere on my body now. Pretty much everything except necrotizing fasciitis.

I feel ugly. I feel distinctly unattractive. I feel hideous. I feel marked and marred.

And this was depressing me, deeply.

I'm not normally someone who measures his worth by his looks. (Thank Ghu for that, or I'd have been a basket case years ago.) On my best day, I'm a middle-aged fat guy with a lumpy face. I get by in the world through force of personality and certain combination of native charm and low cunning. It's hard to feel charismatic, though, when your face looks like the craters of Mercury. There's not much which can assault my towering self-confidence, but this kind of disfigurement is one of those few things.

So last night, I was very upset and depressed. I'm not especially pleased with myself or the world this morning, either, though the worst has certainly passed. At least for now. As a practical matter, I'm concerned how this mindset will affect my enjoyment of Norwescon starting this afternoon.

Normally I get by in life by simply not caring what other people think and doing pretty much what I want. I always figure if I'm having fun, people around me have the opportunity to have fun with me if it pleases them. Now, though, I feel social awkwardness and personal shame in a way that I haven't in decades. It's really messing with my mojo.

Is this because the skin conditions are visible evidence of my illness? Or is this just sheer old fashioned embarrassment? I don't know. I wish I did, because then I could banish it.

More likely, I know that in general I am wearing thin. The mortality prospects introduced by the January surgery and my shift to the status of incurable are still percolating deeply through my mind and my soul. There is ever less of me emotionally and socially. This skin thing is just an external manifestation of the degradation of so many aspects of my life. So maybe I'm fixating. I don't know.

I sure hope I get over this soon. It feels like a supreme waste of time, and of mental and emotional energy. But my face is what the world sees of me, and right now that face is a disaster. And this keeps bothering me.

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User: a_cubed
Date: 2013-03-28 13:43 (UTC)
Subject: (no subject)
Just look at TOmmy Lee Jones. Men don't need smooth skin to be sex symbols!
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mlerules: Cruella
User: mlerules
Date: 2013-03-28 16:15 (UTC)
Subject: (no subject)
Hmm, methinks what the world actually sees of you is your words far more than your face, and when folks meetcha in person, they look beyond the skin to the person below (as they always have). Hope you can get beyond this and have a good time and enjoy BarCon 'n' Norwescon.

Meanwhile, 1 pt for Silver Lining spotting: Pretty much everything except necrotizing fasciitis.

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frabjouslinz: Me Street
User: frabjouslinz
Date: 2013-03-28 17:18 (UTC)
Subject: (no subject)
Keyword:Me Street
I'm sorry you're feeling this way. It can't be easy, and I know you work hard to hang onto your normal. Hugs.
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Brian Blalock
User: blblalock
Date: 2013-03-28 19:12 (UTC)
Subject: (no subject)
"But my face is what the world sees of me, and right now that face is a disaster."

I think that may be true of first impressions, but anyone who's the least bit perceptive will see past that. Certainly, your friends in the writing community, and your readers will.

Serious illness can heap all sorts of indignities on a person, and can bring depression, both in bouts and as a more insidious low-level constant background noise.

I don't want to gross out your other readers, but I'll suffice it to say that the problem I mentioned in my journal entry yesterday has left me in Depends at 44. (Actually, at 42, it's been an ongoing thing.) I may be in the devilish things from now on, depending on how my healing goes.

On top of that, I went way off the rails with my diet and exercise regime, and it's been very hard to get any weight off while still dealing with recovering from the surgeries. I've been under general anesthesia seven times in two years, and I'm sure I'm not as clear-headed most days as I used to be before all of this, which has put a damper on my writing. Chronic pain is also a fun thing, but I've had joint and back pain for years from old injuries, so although it's the worse of the lot most days, it's just one more.

I wish I could give you sound advice on how to deal with the emotional roller coaster, but all I can do is wave at you from the other car.

I'm trying some goal-setting, but I'm not far along with that. It does seem to help to stay as busy as I'm able.

Here's wishing you all the best.
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Jay Lake
User: jaylake
Date: 2013-03-28 19:14 (UTC)
Depends are my friend too, sometimes. Which is a very discouraging thing. Good luck and good health to you.
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User: msconduct
Date: 2013-03-28 23:35 (UTC)
Subject: (no subject)
Having talked in a previous job with many many sufferers of disfigurements of all kinds, I can offer this perspective:

Facial disfigurement is by far the most difficult. It will never be unnoticeable. However, it was extremely clear that no matter what the disfigurement was, it always loomed much larger in the mind of the person with the disfigurement than for their interlocutor. It's hard to emphasise enough the difference between the overwhelming nature of the awareness of it for the person with the disfigurement and the "OK, just one small aspect among many about this interesting person" attitude for the person talking with them.
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Fluttering Things: infinity
User: moxie_raqs
Date: 2013-03-30 11:48 (UTC)
Subject: (no subject)
"On my best day, I'm a middle-aged fat guy with a lumpy face."

Wow. That is *light years* from how I'd describe you. Your attractiveness has little to do with your complexion, but I can understand why you're feeling self-conscious. It's one more assault on your dignity and normalcy. You're an affectionate flirt, and if you feel unattractive, you could feel like it's hamstringing your ability to flirt. So that's an assault on your ability to interact socially in ways that you value, and as a genuinely friendly extrovert, you're already suffering from the disruptions in your social life. Cancer steals away bits and pieces of your identity. Whether this is a big effing deal in and of itself or the proverbial straw breaking the camel's back, it's hard for you. So I can see how you'd feel like it's a "waste of time" and you'd rather devote your emotional energy to fun and loved ones, but it's okay to have meltdowns. I think anyone would.

::hugs:: I'm so sorry that you're hurting. I can't imagine how frustrating and exhausting this damn disease is. I wish there was something I could say or do to make it better.
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Jay Lake
User: jaylake
Date: 2013-04-01 15:33 (UTC)
Thank you.
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