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Lakeshore - [cancer] Of ports, scans and the smell of ancient oceans
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Jay Lake
Date: 2010-06-09 17:04
Subject: [cancer] Of ports, scans and the smell of ancient oceans
Security: Public
Tags:cancer, health, personal
One of the minor but potentially significant questions that has been raised as we head toward the end of the chemotherapy process is whether to have my chest port removed. The port is a medical device just below my right clavicle that's tied into my carotid artery. Roughly this doodad here.

When the port was installed back in December, I went around for quite some time feeling like the surgeons had left a Bic pen in my chest. I can easily find the knot in my neck where the line ties into circulatory system. The port's head has become slightly more obscure over time as the device has sunk deeper into my chest tissue and acquired a tilt relative to the nominal plane of my skin. It can be palpitated, and the implant scars have never healed due to the effects of chemo, so it's not too difficult to find. As previously noted, we've had to alter the protocol for setting the needle, however. A one inch Huber needle is needed now, where we used to employ a 1/2 inch Huber needle, and I have to achieve a rather ridiculous pose to give optimal access to the port head. But basically, my body has adapted. The port doesn't feel invasive anymore, and it's composed of surgical grade material, so it can lurk in my chest for years if need be, given monthly flushing of the head so it doesn't clot into uselessness.

The primary argument for taking it out now would be because the device was bothering me. Except it doesn't. I may come to view monthly trips to the infusion center for a port flush as a bother, but there are countervailing advantages.

The primary argument for leaving it in is the quarterly CT scans I will be having for the indefinite future, as well as possible PET scans. The veins in my arms are a mess from these past few years, tough enough to get blood out of, but the larger gauge needles required for the contrast dye (CT) and radioactively-tagged glucose analog (PET) are holy hell to get into me successfully. The port provides a much more convenient access path.

(Which reminds me, did I ever describe the olfactory side effects of the chest port? When I'm being injected with saline, I can smell the ocean. Heparin doesn't give me any particular scent. Some of the chemo drugs do funny things to my nose, too. I assume this is a circulatory thing, but it's one of those minor chemo weirdnesses to which I've become accustomed.)

So basically, I can have day surgery to have the port taken out, and trade monthly flushes for quarterly jab fests. (The CT people call in a specialist from IV therapy when they see me these days, that's how bad it's gotten.) Or not.

That's logical enough, and for now I'm sticking with the port. But there's an emotional angle, too.

Though no one has ever formally told this in a medical or oncological context, my own perception of my cancer is that it's unusually aggressive. Onset was two decades younger than average, and metastasis was not expected at all, given the pathology of the primary cancer. In other words, colon cancer has struck me hard twice as a significant outlier on the bell curve. Given this history, I am quite suspicious that this aggression will strike again, with another set of metastases in the next year or two. This is an emotional response, not medical advice, but it's still very real for me. A somewhat subtle and sophisticated form of ongoing cancer fear.

It seems ludicrous to me to go to the trouble of having the port removed, only to have to put it back in six months or a year later pursuant to a subsequent round of chemotherapy. I know this is my heart talking, not my head, but I do have to think forward, and given my history, being slammed with more unusual medical crap would not exactly be a shock.

So I believe I'll be leaving the port in, hoping for the best, but preparing for the worst. Living through this, one passage at a time.

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zellandyne
User: zellandyne
Date: 2010-06-10 00:12 (UTC)
Subject: (no subject)
I would keep the port, too. For all of the reasons you listed.
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cathshaffer
User: cathshaffer
Date: 2010-06-10 00:27 (UTC)
Subject: (no subject)
Seems like a reasonable decisions. I had forgotten how horrible your veins are.
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Jay Lake
User: jaylake
Date: 2010-06-10 01:35 (UTC)
Subject: (no subject)
Yeah, I'd make a terrible junkie. I've been a hard stick all my life, the scarring from the hijinks of the past couple of years just worsens things. And they have a tendency to want to go into my hands when the crook of the elbow flames out, which hurts like frick.
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cathshaffer
User: cathshaffer
Date: 2010-06-10 01:56 (UTC)
Subject: (no subject)
I myself am a phlebotomist's dream. I have large, juicy, clearly visible veins. They could probably get blood from me in the pitch dark using only their toes.
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lotusice
User: lotusice
Date: 2010-06-10 00:31 (UTC)
Subject: (no subject)
Dunno, I've been thinking about this today.

There's an emotional economy there too, what you're talking about.

But it's analogous. Emotional aperture, you know? A certain openness to the possibility, without being unduly pessimistic means that if there are things to accept - needles, ideas, news - and the opening is there, then there is less adjustment.

If you don't use that space then you don't. If you do, it's not tearing through a lot of resistance.

Then again, you only know yourself well enough to say.

hugs regardless.
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Jay Lake
User: jaylake
Date: 2010-06-10 01:37 (UTC)
Subject: (no subject)
Then again, you only know yourself well enough to say.

Thank you. And yes. I'm also quite conscious that my intuition != sound medical advice, but my intuition about this is increasingly strong as I consider the question.
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Sarah
User: bookish_girl_
Date: 2010-06-10 01:00 (UTC)
Subject: (no subject)
Trust your intuition. You know what your body needs and can handle. Only one more treatment, and your body will be mostly your own again. You're in our thoughts each day, and that's two peeps and five cats, so we're pretty formidable.
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Jay Lake
User: jaylake
Date: 2010-06-10 01:37 (UTC)
Subject: (no subject)
Thank you. :)
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Sarah
User: bookish_girl_
Date: 2010-06-10 01:41 (UTC)
Subject: (no subject)
My husband says this could be your first step towards becoming part of a Borg collective. I guess that's one option...
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thinking outside the next box over
User: brownkitty
Date: 2010-06-10 01:00 (UTC)
Subject: (no subject)
Here's to hoping that leaving the port in is a tremendous waste of time.
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Jay Lake
User: jaylake
Date: 2010-06-10 01:38 (UTC)
Subject: (no subject)
Oh Great Ghu, yes. I'd give a hell of a lot for this to be a tremendous waste of time.
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wyld_dandelyon
User: wyld_dandelyon
Date: 2010-06-10 01:36 (UTC)
Subject: (no subject)
If it's not bothering you, there is some sense in not subjecting yourself to an extra bit of surgery. You can always change your mind later after all.
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Jay Lake
User: jaylake
Date: 2010-06-10 01:38 (UTC)
Subject: (no subject)
Heh. It ain't coming out on its own, that's for sure...
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Mary Dell
User: marydell
Date: 2010-06-10 02:15 (UTC)
Subject: (no subject)
All of your reasons sound like good ones to me.

Also, cyborgs are cool.
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Little and foxy and sexy... what more do you want?
User: little_foxy
Date: 2010-06-10 03:03 (UTC)
Subject: (no subject)
I think your reasoning is sound, I think I would do the same in that position to. Especially given your a hard stick... make things a little easier for you in the future because you deserve that.

I can understand your hear talking about this, and I actually believe from what I have managed to work out about you based on your lj, that this is probably the best way for you to deal with it. Prepare for the worst and hope for the best. It makes the good stuff just that much better!

I also want to say thank you for sharing everything that you have through this process it has been a privilege to be allowed to share it with you.
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BarbaraFox
User: saoba
Date: 2010-06-10 03:32 (UTC)
Subject: (no subject)
Years ago a friend of mine would cut holes in her t-shirts, and 'decorate' her Hickman catheter. She did it up as a corsage once, and when anyone remarked on it she'd say 'Yes, my doctor gave it to me... isn't it festive?' in her best Deep South Church Lady voice.

If you aren't up to the idea of taking the port out until further down the line, then you aren't. I'm what the lab techs would call 'a hard stick' and I allow them 2 tries before I insist they go get someone else.
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scarlettina
User: scarlettina
Date: 2010-06-10 03:43 (UTC)
Subject: (no subject)
I think this makes a mound of sense, Jay. Anything that makes things easier for you is a goodness, even if it's a this certain value of goodness.
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Max Kaehn: Science!
User: slothman
Date: 2010-06-10 03:43 (UTC)
Subject: (no subject)
Keyword:Science!
You could look at it as an application of Murphy’s Law, similar to bringing an umbrella to reduce the probability that it will rain.
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Talekyn
User: talekyn
Date: 2010-06-10 04:06 (UTC)
Subject: (no subject)
At this stage, I don't think you can afford to ignore that emotional angle. Yes, the logical reasons are all valid and useful, but the emotional side is just as valid, if not more so.
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mmegaera: museum
User: mmegaera
Date: 2010-06-10 04:21 (UTC)
Subject: (no subject)
Keyword:museum
Hey, my sister's been wearing an insulin pump for well over a decade now, and she's handled it just fine.

Go ahead and be bionic if that's what's best for you, darnit!
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russ: lyles constant
User: goulo
Date: 2010-06-10 06:58 (UTC)
Subject: (no subject)
Keyword:lyles constant
Sounds reasonable to me!

PS: I was hoping that your link to "this doodad here" was going to be a link to one of these pictures. :)
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Jay Lake
User: jaylake
Date: 2010-06-10 12:54 (UTC)
Subject: (no subject)
Don't think *that* hasn't occurred to me on multiple occasions.
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kameron_hurley
User: kameron_hurley
Date: 2010-06-10 10:20 (UTC)
Subject: (no subject)
My husband just hit the two-years cancer-free mark, and still has his in. He had Hodgkin's, which is very treatable, but they recommended he keep it in at least 2 years. Just, you know... in case. I'd think two years is the minimum, with five being the max (after five, insurance considers you a Real Human Being again, so there's that for a milestone).

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MEG: Baldy
User: djelibeybi
Date: 2010-06-10 13:48 (UTC)
Subject: (no subject)
Keyword:Baldy
I'm in a similar situation. I never did have particularly good veins and chemo five years ago became very distressful for me and the nurses towards the end. I almost never manage a needle in the arm, mostly it's in the hand and, on a couple of occasions, from the feet.

So, this time, I've had a PICC line installed. It's not as neat and tidy as your port and I have weekly cleaning sessions but it's so much easier than the regular struggle to find a vein.

As to when the treatment's complete, well, I'll have this in for a year all-told and I may get used to it well before then. For myself, I'd be glad to remove it for the sake of closure and as an act of defiance of the cancer. I don't even want to think about leaving an opening for a recurrence. Maybe I'll feel differently in a few months' time.

Whatever works for you is the right thing to do. It's your body, your mind and your choice. Have a spoon.
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Jay Lake: cancer-biohazard_bag
User: jaylake
Date: 2010-06-10 19:33 (UTC)
Subject: (no subject)
Keyword:cancer-biohazard_bag
Spoons, indeed. One of mine just happens to be implanted in my chest wall.

And good luck on your current journey.
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barbarienne
User: barbarienne
Date: 2010-06-10 19:39 (UTC)
Subject: (no subject)
I don't think it's unreasonable fear to decide to keep the thing because you might need it later.

If taking it out isn't a significant improvement in your QoL over leaving it in, then don't fix the unbroken thing.

Besides, if you take it out, we don't get to make Baron Harkonnen jokes. :)
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his wholiness the rev drjon: concentrate
User: drjon
Date: 2010-06-10 20:32 (UTC)
Subject: (no subject)
Keyword:concentrate
I hadn't heard about ports until a friend of mine who's also a nurse in cyto told me about them recently. My reaction was "That's so awesome! I love living in the future!", even though she did describe some of the problems which can develop (including tilting, as has happened to you).

Also, hugs.
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