More DIY, less die

The focus of the blog is clearly shifting away from my cancer exploits & I’m okay with that. It’s a welcome development, and I am amazed to think of all the things I’ve yet to do, that have been waiting for me to get better.

As I write this, I’ve got a big gloop of watery indigo “dough” on my head: I’m on Day 2 of my hair-coloring adventure. Yesterday, I did the henna part, that makes it orange-y, and today, I do the dark blue part, that makes it brown-black. It’s still a fascinating process to me, after well over a year of this method. My hair’s longer than ever, and straighter than ever, and much healthier than it was during the years of chemical processes. Yay.

I’ve got an art project brewing, one that is more high-tech than you might be used to, coming from me, but tied in to craft, so please bear with me as I feel my way with this new idea. It’s QR codes. Right now, I I’m knitting a simple one that I made in black & white fair isle colorwork, aided by the wonderful chart generator at microrevolt. When it’s done, you should be able to take a photo of the block with your cellphone, and if your cellphone reads QR codes, you’ll be taken to diynotdie.com: the URL is embedded in the information in the knitting. My next one will be intarsia, and contain a John Baldessari quote, I think.

This isn’t new technology by any means, but it’s caught my attention, and I want to try doing some art-craft stuff that brings technology and craft together. Companies are using this technology for promotions and stuff like that, but I see huge potential to spread code, patterns, poetry, artwork, prose, etc.

In other news, I’m still struggling with my horrible cold, which has invaded my head & chest, despite repeated doses of Thai food, which usually does the trick for me. Hmmm.

More later…noses to blow, hair to de-goo, you know.

A parting gift from the oncologist:

She gave me her cold!! Can you believe that shit?

(Ahhh, I’m not really mad. Getting to stop going to the oncologist is the real gift. I do wonder, a little bit, if I got sick because I finally, after 1 1/2 years, got to relax for a second…)

Out of the woods

I am now an ex-patient of my hematologist/oncologist.

The CAT scans, X-rays, and quarterly blood tests are now history, rather than future. My blood test was in the normal range, and we all happily said “goodbye! Hope I never have to see you again!”

The mystery lump is still a mystery: doc’s parting words were to keep an eye on it to see if it gets bigger, but she doubted it was anything to worry about. As she put it,”Oncologists aren’t necessarily great lump dectectives…we usually see people after the lump, after the biopsy, after the surgery. It’s all determined by then.” So, I’m to keep a perfunctory watch on it, at the most. Whew!!

We ate tons of sushi & tried to celebrate by shopping, but came home empty-handed (no luck on the sales racks of Century 21).

As we drove home, I realized that I have no appointments scheduled for 6 months. That hasn’t happened in a damn long time.

Excellent!!

yayyyyyyyy!!

One more test down, and one more to go (tomorrow). All my biopsies for my stomach & esophagus came back negative for cancer/precancer, and also negative for H.pylori (the nasty organism responsible for ulcers and [I think] stomach cancers, too)! Yay! Of course, the abrasion in my esophagus is no laughing matter, and I have to take those damn Prevacids every day, but…oh well.

Tomorrow’s the cyst-lump day, and my usual blood tests, to see if my hematocrit has come back down to normal numbers yet. Of all the tests I get, this test freaks me out the most, because I’m very pro-surgery, I think. I mean, getting things cut off is something I take in stride pretty well, at this point…the prospect of leukemia or multiple myeloma, which bow to no knives, scares the bejeezus out of me. Really, I’m hoping that they’ll decide that it’s not something to worry about anymore, and stop testing me. I keep hoping that. And so far, they keep testing.

I’m no seasoned veteran of this whole cancer thing yet, and you know, I don’t really want to be. I’d be content to not collect another hospital ID, or set of scans, or scars, or bills. I keep wondering when this will all be behind me. Maybe that doesn’t happen. I guess I have to be OK with that.

(And on that pensive note, I’m gonna go to sleep)

murk!

Back from the endoscopy…it went pretty well, I suppose, except that I’m now on Prevacid for some ulcerations due to my hiatal hernia. They did a biopsy, too, so I’ll be waiting to hear about that sometime next week. I have a bit of a stomach ache now, 4 hours later, which I guess is par for the course.

The new dumb thing in my life is a hard little mystery lump that popped up just below my right ankle: I went to the GP, and he wants me to monitor it, since it might just be a cyst, or it might be a wayward lymph node.  He said, “I’m very glad you came in with this: this is exactly the kind of stuff people with your history are supposed to do.” If it changes in size at all, I have to come back in for a biopsy.

So, we net out at: “neither here nor there”.

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!

Reaping the hypothyroid harvest, and

How long has Manon been doing this? A two-part post

It’s funny how I tend to feel that the horribleness of hypothyroid should cluster all the symptoms at once, but it doesn’t really happen that way. So, it shouldn’t really have surprised me when I took my makeup off the other day, and half of my eyebrows went with it. Dang. Break out the eyebrow pencil! And then all the skin on my arms, legs and cheeks is suddenly, viciously dry & peeling. I smear myself with moisturizer, but it doesn’t really do much. This is a very strange thing for me: I generally never need moisturizer. I’m guessing this will all straighten out as new cells grow to replace the hypothyroid-influenced ones, or at least, I hope so.

In other news, I found out that Manon likes to drink from my bedside glass of water. I really wish I’d known that a LONG time ago. It’s not that I begrudge her anything, it’s just that she: 1. has her own damn fresh water, 2. licks her butt.

I’m going to go brush my teeth for a VERY LONG TIME.

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.)

like a bad hangover

Sheesh….I still feel like crap, and it’s days since that scary little event. We took my temp. last night, since I seem to still be cool to the touch at times, and it’s still not up to 98.6, even now. It’s close, but it’s not there yet. Who would have guessed you could even feel that? I would have thought that such tiny increments were something a person wouldn’t even notice…I guess I know better now.

Right now, the worst of it is profound muscular fatigue: I feel like my muscles are full of lactic acid, all the time, even if I barely move them. I wake up with my muscles feeling like I just spent a couple of hours in the weight-room, and the whole day goes on, like that. I’m just drinking lots of water, and taking green juice (wheatgrass, chlorella, etc.) supplements, and eating lots of veggies & fruit, to try to flush the poisons out.

But, I’m keeping the posts short…it’s just too taxing right now. More later, when we’re more firmly on the upside of all this.

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.