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Jay Lake
Date: 2013-04-24 05:49
Subject: [cancer] Field notes from Cancerland, blood and sunlight edition
Security: Public
Tags:cancer, child, family, friends, health, personal, photos, radiantlisa
Blood Chemistry

My bloodwork from Monday's oncology visit indicated elevated sodium and depressed magnesium. We're not clear on why I would show elevated sodium, except as possibly an accident of diet over the preceding weekend. The magnesium depletion is a known side effect of Vectibix. Though I'm already taking a magnesium supplement, I now have to double that up. Since magnesium, like calcium, is contraindicated with my Doxycycline, I have upgraded to a four-times-per-day pill routine. Oi.

Liver Functions

The bloodwork also showed my liver functions as continuing within normal ranges. This means whatever's going on with the elevated CEA levels hasn't yet grown large (or fast) enough to impair my liver. That's relatively good news, as the swiftness of the recent spike in CEA levels, combined with my recent metastatic history, had led me to fear a wildfire metastasis moving very quickly through my body.

CEA Levels

As of Monday, CEAs were at 6.6, up slightly from 6.4 two weeks ago. That amount of variation is within the margin of error of the testing process. Since one of my fears was a sharply uptrending CEA, in a weird way, this is good news. It's also bad news as it confirms the overall uptick from March's 2.9, which implies with near-certainty new metastatic tumor activity, probably in my liver. I will know more on 5/8, after my 5/7 CT scan. I have also queried my oncologist about the value of getting bloodwork done on 5/7 (ahead of my usual schedule) in order to have the most current information when we meet.

Social Work

After a conversation with the American Cancer Society reps in the infusion center Monday, I am pursuing an appointment with the oncology social worker to discuss support resources in the somewhat likely event I receive a difficult diagnosis on 5/8. We've been playing phone tag thus far. I've made it the past five years without feeling the need to seek a support group, but when I go terminal, I suspect I will benefit from something like that, as I'll be further outstripping the resources of my circle of friends, family and loved ones. Likewise, looking to such support for [info]the_child. She may or may not be interested in participating, but I definitely want to offer her the option.

Planning Ahead for Liver Failure

I am also pursuing an appointment with the oncology nutritionist to talk about how to eat in the context of progressive liver failure, as seems to be a likely future course. Even if this round turns out to be something other than liver metastases, liver mets are my most probable fate. As mentioned before, I am also meeting with my primary care physician on 5/10 to talk about the course of liver failure and what kinds of advance planning we may want to do with regard to treatment decisions, cognitive issues and so forth.

Dealing With Photosensitivity

A while back, Team E— turned me on to a line of clothing from Loki. They're climbing wear, but they turn out to work really well for people with extreme photosensitivity. (i.e., me.) Basically, Loki makes jackets and hoodies at various weights which include hoods much deeper than normal, face masks and optional mittens built into the sleeves. It's some pretty clever stuff.

The problem is that the first hoodie I bought was in black, and when I have it on in full sun aversion mode, I look like I'm about to rob a convenience store. So we got one in green. Which mostly makes me look silly. Which fine, because silly is less scary to other people.

Jolly Green Jawa

Lisa Costello and I were trying to put a name to this outfit, but it was [info]calendula_witch who said I looked like the Jolly Green Jawa.

At any rate, Loki gear is highly recommended if you or someone you know is dealing with chemo-induced photosensitivity. (Or photosensitivity for any other reason, I suppose.)

Skin Conditions and The Itch

Another piece of advice on living with cancer that turns out to need a signal boost cropped up during last week's Reddit Fantasy AMA chat, of all places. That has to do with dealing with skin conditions and the damned itching from (in my case) Vectibix. There are certainly other drugs which create this problem as well. Almost every night, I take a baking soda bath. Like you might do for poison ivy. I use the equivalent of a box of baking soda, though we buy it in large bags from Costco, poured into water as hot as I can stand to be in. I then soak myself in various positions to get as much coverage as possible. This also tends to make me very sleepy, which combined with the reduced itching, leads to a much better night's rest. My skin winds up feeling a bit slippery from the baking soda, which takes a bit of getting used to, but I also take a shower every morning. So, as with the Loki gear, if you or someone you know is dealing with chronic skin conditions or itching, this is highly recommended.

Photo © 2013, Lisa Costello.

Creative Commons License

This work by Lisa Costello is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.

Post A Comment | 11 Comments | | Flag | Link

User: halloranelder
Date: 2013-04-24 13:33 (UTC)
Subject: (no subject)
Kermit in da hood?
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Chris McKitterick: Chris Gully Foyle
User: mckitterick
Date: 2013-04-24 15:20 (UTC)
Subject: (no subject)
Keyword:Chris Gully Foyle
Just so much stuff to have to deal with. I'm happy to see you have retained your good humor re: the hoodie!
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User: shelly_rae
Date: 2013-04-24 16:23 (UTC)
Subject: (no subject)
Would epson's salts work like baking soda? I've no idea, for I use them for some of my pain.
I've had so many side effects but I'm grateful not to have the sun sensitivity-that would depress even me. I like the sunblock clothing line. Excellent solution.
Carpe diem dude
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Brother Flaming Sword of Moderation: Showtime!
User: johno
Date: 2013-04-24 18:15 (UTC)
Subject: (no subject)
Da Wizard of Steampunk?
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User: klwilliams
Date: 2013-04-24 18:30 (UTC)
Subject: (no subject)
If you have heat sensitivity along with sun sensitivity, wearing a black hoodie might not be a good idea. And you do look like a Jolly Green Jawa.
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User: swan_tower
Date: 2013-04-24 19:02 (UTC)
Subject: (no subject)
You look to me like some kind of postmodern superhero, for which the name "Jolly Green Jawa" works quite well. :-)
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Reynardo the Red
User: reynardo
Date: 2013-04-24 23:57 (UTC)
Subject: (no subject)
Methinks the Pink (Orchid) would have been more your colour :-) More seriously, that's fine when things are still cool, but what are your plans for summer?
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Jay Lake: signs-hot
User: jaylake
Date: 2013-04-25 01:22 (UTC)
Summer? Mostly to be freaking hot. I'm hot *now* many days out in public.

But it's not like I spend a lot of time outside anyway. Not with this issue. And our average high in July (ie, midsummer in the Northern Hemisphere) is 79 degrees F., so it's not like it gets all that warm around here.
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User: asakiyume
Date: 2013-04-25 02:07 (UTC)
Subject: (no subject)
I hear that taking doxycycline protects you from Lyme disease so, uh... that's something? You definitely will NOT die from Lyme disease.

I'm very glad the blood tests came back more positive than you expected. And your sun-protective wear is very cool. It reminds me of a garment I saw that would protect you from drone sensors (they weren't specific about which sensors, but maybe the body heat ones that gave away Dzhokar in the boat).

Edited at 2013-04-25 02:08 am (UTC)
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User: martianmooncrab
Date: 2013-04-25 07:34 (UTC)
Subject: (no subject)
I looked like the Jolly Green Jawa.

...more like an Oregon Jawa, and we dont see your Giant Banana Slug transport either..
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