amazing!

I love Ravelry for many reasons, and here’s another one: I was just looking at people’s projects, and then followed a link to a Raveler’s website, and found this amazing site of a performance artist who has to be seen, not described:

http://www.lbufano.com/work.php?page=current

Check it out! Check them both out! Girlistic has a really interesting Winter issue out, which I’m planning to dive into later today.

New Year’s Resolution: a procrastinator’s promise

Hi!!

Sorry: I’ve been holding out on all of you, keeping my silly ramblings to the confines of my brain, and writing very little. I’ve been doing so much, it just seemed like a good idea to take a wee break from the blog, but I’m back now, and resolved to post more regularly again. Consider it a New Year’s Resolution.

What’s new:

Tomorrow’s the day of my endoscopy,  since I’ve recently been blessed with a hiatal hernia & wicked heartburn, and my battles to control it are not working very well. I’m hoping for the best, but we’ll see. My new-found change of diet was helping a lot, initially, but it didn’t continue, and I wonder how to manage heartburn with a predominantly vegetarian-vegan-raw food diet.

The diet’s been a HUGE change in my life, otherwise, and all positive besides the heartburn that refuses to go away. Basically, I’ve: lost 15 pounds since November, and am only 5 pounds away from my high-school weight, without ever feeling hungry or deprived, and that’s an amazing thing to experience. Also, I don’t get as sick as I used to. I had two brief colds since November: one lasted  one and a half days, and the other lasted about 1 day. It’s like it tried to establish itself, and then it suddenly disappeared. Awesome!

Also, my lymphedema continues to be a mere shadow of its former self, which means that I’m now finally seeing the normal shape of my arms & chest & upper back, and I can do arm exercises without puffing up, too.

I’ve been knitting up a storm, too, but with my usual luck: lots in the frog pond (ripped back to balls of yarn again) and little on the clothes hangers. I’m doing a cardigan that’s making me happy right now, though, so we’ll see how that goes.

More later.

I promise!

A long, and long-overdue post

I’ve been very thoughtful lately.

I’ve made a rather big change in my lifestyle, which you might have read little snippets about, but here’s the whole thing:

After many weeks of thinking about it*, I decided to turn the LID (low-iodine diet) into an opportunity to change to a mostly-vegetarian/vegan, mostly-raw diet…for the rest of my life. So far, the results have been incredibly positive, and I’m encouraged to continue, but ultimately, the satisfaction goes deeper than that.

The primary positives: in a month, I lost the 10 pounds I had gained during last year’s various cancer festivities, experienced a 70-80% improvement in lymphedema symptoms, got a lot of relief from the severe reflux/heartburn that began last year, and feel a LOT more positive about my future.

I want to dwell on that last point. For cancer patients, short periods of life become largely an experience of aggressive action (surgery, chemo, radiation, hormone therapy, etc.), surrounded by (if you’re lucky) periods of remission. Along with remission comes this scary feeling, of being unguarded, unprotected, vulnerable…I think there’s many who experience some episodes of depression at the end of treatments, like “I don’t know what to do now.” So, what I’m doing now, is to always be doing something. And, as I’ve said before, it may not work in the long run. But it feels like fighting, to me.

There’s something fundamentally wrong with the Western diet, and it’s not anything new to anyone who’s read about diet & disease. Also, what I find most disturbing, is that we’re brainwashed into mourning the loss of foods that are no good for us in any way. I was beside myself, 2 months ago, thinking that I wouldn’t get to eat candy for 2 1/2 weeks, and how hard that would be. I’ve had about 9 pieces of candy in the last 2 months, total. And I found out that I didn’t really miss it…I just thought that I would, that I would feel deprived somehow. And as every day passes, I think about candy less and less. The same with bread, cake, pies, chips…it’s all falling away, and I’m seeing what else I like.

Mostly, I like how I feel and how I look. I like that other people can see it, even those who don’t know that I’m trying to be healthier.  I also like making my own veggie sushi, making up weird recipes with corn & amaranth, broccolini, wild rice, and eating avocados for breakfast.

It’s not all roses. The worst part right now is the daily dose of flax seed oil, which is taken in a  tablespoon  every morning. I have my little ritual: cup of coffee, napkin, and spoon. I take the oil, swallow as fast as I can, and scrub the oil off my mouth, and take a huge mouthful of coffee, to wash away that weird flax-y taste. The I hop around the kitchen for a minute, yelling,”Yuck!” My mother does this, too, but she prefers to do it around lunchtime…I don’t think she can face the Disgusting, first thing in the morning.

I’m not writing any of this in an effort to change anyone else’s ways, because that’s a difficult thing to force on another person. I’m writing this to say that I’m doing something that makes me feel like cancer’s got less of a chance to interfere with me again. And I hope to be writing in 2 years, 5 years, 20 years or so in the future, with that same viewpoint. And if I’m wrong, I hope that I’ve make my body much harder to destroy than it was before.

What are your thoughts on this, dear readers? I’m really curious to know.

(* As much as I hate to credit the place this urge first blinked into existence, I must.  I watched the wretched “Crazy Sexy Cancer” doc on TLC. And while I did not like that film at all, the aggressive stance towards healthy nutrition struck a chord, and I began looking into a sensible lifetime diet for myself.)

Failure and success

Well, guys, the second scan ain’t gonna happen. The reason I’m up, at this late hour, is that I’m back on Cytomel AND Synthroid, and the second scan can’t take place.

I’m telling you all of this to put the info out there, about what nearly happened to me, in the hopes that you’ll be armed to fight harder than I did, back in the scheduling of my test.

Last year, my TSH was over 90 at the time of the pre-scan blood test (which needs only to be over 30), and I went through a long and painful suppression & nearly vomited during the administration of the ablation dose of radioactive iodine. This is a hazardous situation & meant that for the hour following administration, there was a radiation containment team a few steps away from me & I was locked in a room, alone.

This year, despite my hopes that my TSH wouldn’t go so high, and my (admitted) weak attempt to ask for the Thyrogen shots instead of the 6-week suppression (which was turned down), the situation became life-threatening today. Last Wednesday, my TSH was at 126. By now, based on my symptoms, my doctor estimates that it’s now over 150, which started to shut my body down. I’d been feeling far worse than usual for the last several days, and today, after my first scan, I started to seriously decline.

It started as a sensation of heat, and then sweating, and then I realized that even though I was feeling hot, my limbs were cold. I was in bed, with a down comforter & a featherbed below me & I just felt strange and ill. I was nauseated & dizzy & my hearing was muffled, except for the tinnitus that I get during suppression. On a hunch, we took my temperature: 98F. Not 98.6F (normal on the Fahrenheit scale), but 98F.

I called the doctor & she called in a Cytomel prescription for me, and asked me to try and hang on for the test, and we talked about what to do, including preparing to call an ambulance & get admitted to the hospital for IV Synthroid treatment. She also said.”We’re not ever going to do suppression on you again.”, meaning that from here on out, it’s going to be Thyrogen.
I got bundled up in hat, polar fleece pants, a down vest, heavy sweater, thick wool socks, wool wrist warmers & we went to the drive-through pharmacy to get the drugs, just in case. We blasted the heat on the short drive. I never broke a sweat. What’s more: when I took off the hat to feel my head (where the heat should be very strong), my head was cold.

When we got home, I wrapped up in everything but the vest & added a thick wool blanket to my heap of clothing, and sat in front of the woodburning stove. Nothing. No sweating, no warmth. We realized that we were insulating me FROM the heat, making things worse. So I stripped down and stood directly in front of the fire for several minutes and brushed my skin lightly with a bristle brush to make my blood move. When my skin was warm all over, I put all the clothing back on, and all the blankets, etc., and was able to get my temp. up to normal, but not for more than a few hours. In all that time, I had to stay in front of the fire.

By 10pm, it was clear that it wasn’t working anymore & my temp was now under 98, even with hot tea in me, and I began to feel even worse. And then it struck me: what the HELL am I doing this for? Why am I prepared to risk going into shock or a coma, prepared to take the cost of an ambulance ride & emergency room admission, for a second test that is just to validate the test I had today, that showed 0.09 uptake? Isn’t this supposed to be for me, to preserve my well-being? Why am I letting them do this?

And I reached out & took the Cytomel & Synthroid.

Now we’re waiting to see if that’s enough, or if we’re still going to the hospital. The positive signs are that I’m starting to get my temp. back, and I’m out from under all the thick woolens. However, my appetite still hasn’t returned, and I am still dizzy.

My mom just went to sleep from sheer exhaustion. I’m a little bleary, but the adrenaline is keeping me awake, I think. I have the phone at my side, to call 911, if need be.

So tell me, doctors, because I’d really like to know this: why on Earth is there only one protocol for people who have a mild & satisfactory TSH response AND for people who have a dramatic & dangerous one? How can the 24-hour spacing of the scans provide an accurate standard, if the metabolic rate in the latter group is diminished enough that iodine is still too concentrated in the kidneys, g.i. tract, and bladder, after more than 72-96 hours?  How detrimental are the effects of the I-131 in a body that can’t excrete it fast enough? Why is there no shorter-term suppression for people with known reactions to it? Wouldn’t it make more sense to do a 5-week Cytomel span during the 6-week Synthroid withdrawal, than to use the same 4-week Cytomel span with everyone?

I find myself in a very strange place tonight: on the one hand, I’m really happy that I won’t ever have to do this again. On the other hand, I’m really pissed that it had to be like this to get the point across.

And I can’t begin to tell you what it’s like to feel your body start to shut off the blood to your limbs, to touch your arm, leg, chest, face, in a 80+ degree room and feel only coldness coming up.

breast-free!

A pleasant surprise today: I found a site through the forums at breastcancer.org;

http://breastfree.org/

I haven’t had time to really delve into it, but I can just say that the little bits I have seen so far are wonderful….they show how unreconstructed bodies look, and they show how prosthetics look, and you are able to get a good handle on what the various options are. Brava for breastfree.

Published!

My article’s up on Etsy! Yay!

Craft Takes on Breast Cancer: Clothing the Rebellion

minor freakout

I submitted an article draft to Etsy.com’s Storque (their online mag), for the Craftivism column & I haven’t gotten any comments back yet from them…and the article is supposed to run tomorrow. YIKES!!

Here’s to hoping it was a clean first draft & they were cool with it…and that they’ll run it in the morning. Oh, nervous stomach!

This is only the beginning of my adventures in writing: I’m planning to use that article as a sort of writing sample for Craft (the sister pub to Make, that O’Reilly publishes), about our dear Rebel Jackie’s sartorial revolution.

Wish me luck! Ow!

Apples and applesandapplesandapples

Just knocked down one of my many tasks for this weekend, but starting the apple-picking just plain left me scared shitless of how much is still left to do!

We have five 35-year old apple trees in the yard, and my mother requested that we pick the apples while she’s in Colorado, since that’s usually her task.  These are the ugliest apples you’ve ever seen. Perhaps once they were a domesticated Macintosh or Delicious, but they’ve all been warped into being some strange ugly green-yellow apple that just yells,”Don’t eat me!” But they make the best damn applesauce and pie and just about anything that’s cooked. My mom eats them raw, cut up carefully to avoid the various scars and inhabitants (i.e. orchard worms), but I don’t see how she does it.

So I’m busy as HELL, but there’s these hundreds of apples staring at me, every time I look out the window, and I’m just not able to ignore them, and let them be taken by the deer and yellow jackets. Just like when I was heinously busy, and my mom got HGE (tick bite illness with a 105 degree fever) just as all the green beans needed to be picked. That’s gardening, farming, what have you. There’s no time to NOT harvest, unless you want to throw away your money and time, and it’s not a matter of convenience. Growing your own food is not convenient at all. It’s essential, and it’s rewarding, but you’ll hardly be well-rested.

I started at the smallest tree, and picked about 25 pounds of apples, dodging the flying yellow jackets and trying to ignore the ones who were threatening to sting my toes…and that’s about 1/2 of what’s on this tree alone. So, we’re looking at a couple hundred pounds of apples, once all the trees are done. It’s daunting, to say the least.

I finished my work in the early morning, and am summoning up the strength to go tackle the Great Frog Move of 2007  (see today’s earlier entry), and it’s a damn glorious autumn day & I want time to just experience it & stop all this mad rushing about. But convenience is for other people.

Pink for October AGAIN!

Last year I participated in P4O and met my friend Em, of the cancer blog Undone. I’m doing P4O again this year, and this time all my energy & thoughts are focused on Em, whose recent recurrence is gnawing at me.

Pink for October is pretty simple, and it’s non-consumerist, which appeals to me. It’s simply that if a large portion of the sites you went to daily had all turned to the same color, it would tip you off that something was going on, that so many people were affected by the same thing.

As much as I HATE pink, I’m going there. So shield yer eyes, kids…it’s gonna be a garish 6 weeks (I’m reverse lazy…I don’t want to worry about having the blog pink BY October, so I’m doing it 2 weeks early, which will let me relax a little)

Emotional Cauldron

I’ve been emotionally all over the map lately, largely because of how nutso work is right now, but also because of a friend’s recent relapse from remission, which pisses me off so much I can hardly stand it. She’s done everything right, and still feels somehow guilty, and it all makes me just wish that I had time, money, and good health aplenty, so I could do over to the UK and keep her company through all this shit. And I know I’m not the only one: Laurie (notjustaboutcancer) and Jacqueline(Rebel1in8) are also wishing for once that this globe we’re on was small enough to accomodate our far-flung friendships with the remarkable Emily.

I’m also dragging out the fall clothing, which is a mixed bag of pleasure and annoyance. I tried on my wardrobe staple, my leather jacket, and realized that it has a ridiculous amount of shaping in the bust area, and now looks stupid on me. Ditto the other leather jacket,which was hardly worn, but which pre-dated the whole cancer crisis, or I’d never have bought it. Instead of making me wish I had tits again, or gone for reconstruction, it makes me even more determined not to be a fucking mannequin or dress form. If my clothes want to fit someone I’m not anymore,then I just don’t need them. Hello, boys’ motorcycle jackets! Yay!

(See? Emotionally, I’m like a yoyo right now.)