slough of despond

well, dammit, I hate to say it but I am STILL not feeling so great. So much for being one of those people who breezes thru chemo (uh, are there any of those???). Main SE is still exhaustion, and, the last two nights I added "inability to sleep" and "general malaise" to the FX brew. This is not a happy occurrence, since it seems that I will spend my precious summer dragging myself blankly and tiredly from home to work and back home again...

SIGH. poor, poor me.

FX 2: out of the valley of the shadow...

Well, what's not to love about chroncling every single one of one's minutest physical reactions to something as momentous as chemotherapy? The gross details, lovingly embellished, delivered in hushed tones, capable of rendering the strongest individuals blanched of face, and in awe of the person undergoing such torment...

...heh. well, I'm not gonna get as gross as I'd like to, but here's an update on my first chemo experience:

As you know, I had chemo last thurs. Friday I was pretty much ok, just a slight loss of appetite. Saturday I was downright queasy, but otherwise ok, I could run, but couldn't eat! Sunday I was exhausted, queasy and felt otherwordly, limbs not cooperating. Sorta wobbly.

So, then we head into Monday.
Monday, I woke up feeling AWFUL. by far the worst so far. Nausea and exhaustion. Mostly exhaustion. I discovered that I craved boiled potatoes if you can imagine such a thing (I'm a spiceaholic from way back. But chemo has made me not even want salt...). I went to work. Almost turned right around and came home, I could not get going. And, i had a decided case of chemo-brain. Foggy... Since I am supposed to be a lawyer, I am presumed to at least be able use my brain at work. So this was not so good.
I left a bit early, and came home. I crashed at 8pm.

And woke up today, Tues, feeling almost human. I went to the gym and ran for about 20 minutes before work, and that felt pretty good. The nausea abated a lot too. There are a lot of things I can eat now, without getting royally grossed out.

So the upshot is that days 3 & 4 seem to have been the worst. I think one or 2 more days of hitting the sack super early are in order, but I think I'm good...until NEXT TIME....

wigging out/FX update

This is me trying to tell you that CHEMO IS FUN! (heh. don't buy it!!)

Seriously tho, there is fun to be had, namely in trying on wigs. I went to a wig store called Tiffany Wigs
which not only takes insurance cards, but is run by a woman who used to style the B-52s' hair!


This may not thrill some of you, but it thrilled me all to hell. I mean, conservative is easy, beehives are HARD.

However, I did get a good, serviceable, short blond wig that looks a lot like my hair when it's straightened. Fine and good, everyone happy.

But, damned if i didn't want that long one....sigh...

Ok, on the FX front:
day one -- friday: Not much in the way of FX. Some nausea, some loss of appetite. At work I seem fine, just a little physically weak.

day 2 -- sat: Lots of nausea for me. So far that's the biggest side effect of chemo. Anti-nausea meds don't really cut it. No vomiting, but a queasiness like a bad hangover, food grosses me out. I manage to run 2 miles and buy a wig, then i crash.

day 3 -- sun: today i feel crappy, but not as nauseated. I can eat, but I'm pretty weak and tired. there's this weird wooziness I don't like. It's still reminicent of bad, mixed-drink, hangovers, although mercifully without the headache... Today I'm gonna walk a bit, do some yoga and laundry, and otherwise take it eaaaasy...

Chemosaurus

Legend has it that chemosaurus was once a human female named abigail, living in the early 21st century. She got cancer, which was, in those days, a serious disease, mandating agressive "chemotherapy," a 4 month long regimen of toxic drugs, taken intravenously.

At first, the regimen went as planned. However, as time went on those close to abigail started to notice that she was becoming even scalier and meaner than usual, until finally......CHEMOSAURUS!!!

* * *

Ahhh chemo brain kicking in. I feel sorta crappy right now (lightheaded, nauseous, tired), but I'm thinking the worse you feel the more sensitive you are to it, and thus, the more it kicks the cancer's ass. Highly unscientific reasoning, i am sure, but, whatever.

I'll post more about the actual experience later. We went shopping after, and got lots of really good food, b/c I have to start eating healthy. I got some cool recipes from HERE, and made the sicilian tuna basil pizza this evening. very very worthwhile, even if i do feel like vomiting the whole thing up right about now...

a bientot

assumption of risk

The news yesterday that I am, as far as medical science can detect, actually cancer free, doesn't really change anything but my emotional state. Because I had an "agressive" cancer, I still get chemo, I still have to do "agressive" battle to nuke any lurking potentialities, any hints or thoughts of cancer that may be subtly forming in my rather mercurial cells. The oncologist told me: "You don't have cancer any more as far as we know, but we're going to assume you do. If you really don't have it, then this keeps you that way. If you do, then we hope this gets rid of it."

It's funny to get treated for a disease that, to my mind, is over and done with, especially treated with such heavy artillery. However, although I'm not generally in favor of preemptive strikes, in this case, I'll adopt way more self-serving politics. When it comes to my cancer, I say nuke 'em all. Let god sort 'em out.

chemical grrrl

Some folks puke and
some folks squeal but
I think I'm ok...

Cause its the doc with the best prescriptions
makes my chemo day

Some folks chill and
some folks ill but
I'll do what I may

If I suffer
I can pop a
pill and it goes way

cause we are living in a carcinogen world
and I am chemotherapy grrl
you know that we are living in a carcinogen world
and i am chemotherapy grrl*

OK perhaps a bit premature. Although I thought I would start chemo today, my panic-fevered brain must have misjudged. Today I had the follow up onc appointment to ok me to start chemo. I start on thurs.

The Fantabulous news is that all my scans etc came back normal, or, in radiologist-speak "unremarkable", as in "liver, spleen, kidneys, stomach, (etc) unremarkable. Well this is one time I am glad to be unremarkable.

(And what's more, this will prove to those who doubt it that I actually AM NOT an alien).

so, Chemo starts on thurs. And I get a day to detox from this:

This being the summer of love, plus 40,000 pounds, 50,000 wrinkles, millions of dollars and roughly 800 SUVs. Clearwater festival** = folky festival for hippies and activists who can afford the hefty $45 cover fee not to mention buy ears of roast corn for 4 bucks apiece. THIS took place this past weekend up here in da hudson river valley.

Now believe me, chemical grrl would not normally find herself anywhere near such an event, as she tends to avoid folk music and excessive crowds of humanity. However, the BF had a booth there (he has a non profit org) and it wasn't only hippies and folk music fanatics. There were also a small quotient of science-nerd type conservationists, people like me who are fascinated with sonar pix of the hudson river bottom. (In fact, I will have you know that I worked on bringing the first hudson benthic (sonar) pix to the web. See some of them here).

so I spent the weekend there, moving stuff around, getting sunburned, hearing way too many stories, and eating really bad food. It was a good way to keep my mind off my problems, and on other peoples' problems (especially sartorial), squarely where it belongs.


OK anyway. back to reality. The chemo stats are:
I'm doing dose dense chemo
4 sessions of AC - 2 wks apart
4 sessions of taxol - 2 wks apart
Herceptin for a year - in hits 3 weeks apart

I also get neulasta for white blood cell count
and emend for nausea. Plus some other drugs to do various things to my physiognamy, all of which are for my own damned good, I am quite sure.

I told my oncologist that I had an "irrational fear of constipation" (which is actually true), and he recomended senekot or milk of magnesia. So, I guess I'll be purchasing some of that too, b/c the anti-nausea meds give you that annoying packed effect...

But, i have til thursday. Bit of a reprieve...
Also, today I ran! The first time since surgery. It felt f**king awesome.

*heartfelt apologies to Madonna...
** don't mean to dis the clearwater festival. It's a good thing, really. I just could have used a lot less of it!

Scanners

Yesterday was my echocardiogram. It was kinda cool, I got to lie down and watch pictures of my heart doing its thing. Hearts are a bit creepy, I find, off there inside you on their own, just carrying on as if there's a party going on, but there's no music anywhere. Hearts are a little bit mad. Bwahahaha. I've always been kinda bothered by those times at night when you can hear your heart beating...but i guess the alternative is not so happy...

At any rate, during an echo, you can watch (if your tester is nice like mine was) the whole little movie as she moves the ultrasound thing over your chest. AND it's color coded, so you can see the blood flow, and even the velocity of the blood and the muscles. Quite interesting. Then I went in to work, late again.

Today was less interesting and more bothersome. I had the cat scan, which, I was terribly annoyed to find, has nothing at all to do with cats.

I thought it was, like, a 10 minute procedure, so I told my boss I'd be a bit late. HEH. The damned thing took 2 hours. Why? Because you have to drink about a half gallon of white, thick, vaguely sweet tasting murk reminiscent of milk of magnesia (barium sulfate or sulfide? which is actually a salt of sorts... i think). Yummy. And you have to do this over an hour. There was an old Spanish woman sitting across from me whose daughter was trying in vain to get her to drink the stuff and she just flat out refused. "NO ME GUSTA. NO ES SABROSO. NO" or something to that effect. The poor daughter was at her wits end.

Then, they come in and tell you "Ok we are going to inject you with some iodine. This can cause allergic reactions including death, but that is very rare." I'm told that if i feel itchy, or short of breath, I should make some kind of move. It occurs to me that the radiologists or whatever they are are back in their little room joking and eating take out and will not see my feeble wavings... but whatever. I gird my loins.

Or rather, I ungird them, and get on the machine. Another toroid, which slides up and down your body like a very unwanted advance. The toroid has a control center on the top of it, facing you, which shows a round green happy face breathing in, and a round red happy face holding its breath. The idea is that you are to take a breath in when the machine tells you to, and hold it until it tells you to breathe again. The possibilities for malfunction here are mind boggling, but i choose to not dwell on it. (however, it occurs to me that this is an interesting reversal. Usually, man tells machine what to do. NOW machine tells man. See what I'm getting at? never seen the terminator series?...oh well...)

Ok, enuff digression. I ungird and lie down. I am hooked up to an IV and feel, blissfully, nothing. I think, ok, well I can totally handle this iodine. The toroid goes into action and i get to breathe, slide, hold, slide, breathe, slide, hold, slide. I am SO relaxed.

Presently, the tech comes in and says "now i will inject the iodine" OH SHIT. NOW?
ok. The iodine goes in. Flush. Heat. It seems to go right to the genitals. it feels like that adrenaline shot you get when you get badly startled. The urge to void and run... But, I'm breathing. I'm not itchy.

YET.

Then, it is over. I feel suspiciously prickly. Another tech comes in, looks at me and gasps. I have hives all over my neck and face. Oh how nice. They are somewhat concerned. I am placed in the waiting room and given a vat of water to drink to flush out the iodine, and forced to wait until my hives go away.

I finally crawl into work, at an hour i do not even wish to reveal on this blog.

AND Later, I got another several hives. but, I seem to be breathing. Breathe, hold, slide.....

OK Back to Da Nile. I am steadfastly avoiding thinking about the, uh, results of all these tests...

And the Oilers just scored 3 goals in the first period. way to go.

International week of denial

I have proclaimed this the International Week of Denial. for one week, everything that sux in my life gets DENIED (think hockey announcer). If you can't do a whole week, then do a day of denial. It's good for you!

Read all about it at mon autre blog. Because denial is good.

snatching victory from my teeth --or, the tooth fairy comes at last

Finally, some good news. My teeth are fabulous, great, wonderful and splendid! Well, ok, there is a chipped one, and some plaque build up, but other than that, I have a very healthy mouth.


I'd been reading all kinds of horror stories about chemo and teeth, and so, in a state of even more panic than usual, I made an appointment with the BF's dentist for a check up. Now, lest you think this is a run of the mill event, I haven't been to a dentist in, oh....let me see, TWENTY-FIVE YEARS sounds about right...

Thus, it was with some fear and trembling that I approached the now unfamiliar white room filled with things that go scrape-scrape and drill-drill and whir-whirr. But, all was well in toothland. Shocking eh?

Now, don't take this as carte blanche to ignore your own teeth. We can't all be as genetically blessed as I am.

My mouth should be bronzed....

dread, drugs and docs

I got Zanax, for nerves and Ambien, for sleep. I have been waking up at about 3 a.m. and then having tiny anxiety attacks about little things like death and disease which cause me not to be able to go back to sleep for a couple hours. When I have to get up early for work, this is NOT cool.

Having been raised by a christian scientist for whom even asprin was "error" or "mortal mind" (those not familiar with CSspeak can just substitute the words "devil" or "evil" there), I am, even though a product of the punk generation, not used to popping pills. NO. you grin and bear whatever you are bearing. Actually, for a lot of minor things, this approach is healthier than reaching for a pill.

But, man...when my SLEEP gets messed up...
i'll take the freakin drugs.


Today bone scan day. Oh jolly. It is hard not to fear this...

***
Later:
I had the scone ban (bone scan). It wasn't so bad. I walked to the hospital which took about an hour, so I wasn't all keyed up when I got there. Then, I was injected with radioactive dye and told not to interact with babies or pregnant women. Uh...NOT A PROBLEM...i tend to avoid the drooling class if I can possibly do so...(heh, just joking. I've got nothing against babies...i'm sure they are wonderfully tasty...)

Anyway then we came home for 3 hours during which time I took a zanax. Then back to the hosp. The bone scan is not bad at all. I'm claustrophobic and this was a breeze. it consists of a table, and a large toroid which the table passes thru, much as a magician passes a hoop around the sleeping figure of a levitated woman to prove that she has no strings attached.

The toroid also has a big flat area attached, which is the camera. Although it starts off pretty close to your face, it is moving the whole time, and you can see out the sides, so I had no claustrophobia at all. (perhaps the zanax helped...?). But no, it's not the type of thing that triggers my claustrophobia, like closets and airplanes.

I lay there and amused myself by thinking of star trek and trying to estimate the speed of the toroid. I came to the conclusion that it was moving about 2 inches per minute, which Gareth later confirmed (he watched it). Estimating moving speeds is very comforting to me. Movement is comforting to me. (Must be my aspergian/autistic tendencies...).

When it was over, I looked like this:



or maybe it was more like this:

uncle onc

I went for my first visit to an oncologist today. The reception area looked like a japanese restaurant and all the patients were old. It unnerved me. There were signs saying "our patients are prone to massive horrific infection so please do not sneeze or cough or breathe in here..." (not verbatim of course. heh).

But the onc was nice, very positive and rather cheery. I like it when people don't go all serious on me. He laid out the treatment, which is pretty much as I expected, i.e. 4 months of "dose dense" AC chemo, Then herceptin for a year. I'll put in the whole technical jabberwocky when I get it in front of me.

But, before I go thru all that, I have to have bone scans and cat scans to see if the cancer has spread anywhere. Of course, no one thinks it has, but they want a baseline to be sure. I, of course, am totally freaked by this... what if...nevermind. Not gonna go there right now. anyway, lance armstrong survived after extensive metastasizing, and i have the same birthday as he does. YEP! Me and lance. (well, different year tho.., guess who's younger?)

At any rate, that was today.

I also got the seroma drained again. More needles, i told the PS that I felt like St. Sebastian.

The PS told me I can start exercising again next week! woo hoo! probably not running right away but I'm gonna try to swim and maybe deep water running or some biking. It will feel so freakin good. Walking just does NOT count as exercise in my book. For chrissake. I mean I've been walking 45 min to 1.5 hrs per day and it doesn't feel like i'm doing anything.

ok enuff whining.
onward & upward

Race for da Cure

No, no, not the 80s band (the Cure). I just registered for Komen's NY Race for the Cure to raise money for guess what? uh, um...pink ribbons give ya any clue? Yes, you got it. Race for the Cure raises money for bc research, education, etc.

I'll be amidst chemo by that time, but I think I will probably be able to run a 5K. If not, I'll run part of it and walk part of it. At any rate, it's a good thing.

Next stop: a triathalon...maybe this one, since we're into BC charity these days...

"now you know what it's like to live in fear"

Greetings, let's get the introductions out of the way...

I'm Lorien, and I'm a runner, a lawyer, and I have breast cancer.

April, 2006:
On or about April 25, 2006, I went to the doctor because I hadn't been feeling good. I was training for a half marathon and wanted to be in good shape for it. The Dr. found a lump in my breast and sent me for a mammogram and ultrasound.

May, 2006:
May 1, 2006, I went to a breast surgeon, who did a needle biopsy of the lump.
May 5, 2006, I was diagnosed with breast cancer: Stage IIb Grade 3.
I decide to have a bilateral mastectomy, even though the cancer is in only one breast.

"NOW you know what it's like to live in fear" -- Bladerunner.

May 8, 2006, I meet with a plastic surgeon, and decide to have simultaneous reconstruction, with implants, which means that they put "expanders" in at the same time as the mastectomy. So you go to surgery a 45 year old and come out a 12 year old (boob wise anyway...!)

May 19, 2006: the big day. I haven't eaten or drunk anything since midnight the night before. I am thirsty and starved. Gareth and I arrive at the hospital at 10:30 a.m. I am almost ridiculously cheery, determined to erase the tombstones from everyone's eyes when they look at me. A nurse asks me if I'm nervous and I say NO. She says, "I can tell you are, here's a valium." Ok well I'm not going to turn down the valium.

I go into NUCLEAR medicine (or, nucular, as some who shall remain nameless, would have it), and get radioactive. I mean they pumped some radioactive dye into my breast/armpit to highlight the lymph nodes. I am told that then the surgeon can use a geiger counter to tell where to cut. COOL! I love modern medicine!

Then, back to the waiting room, where both surgeons come and talk to me, the plastic surgeon draws on me (very tribal looking), and the anesthesiologist comes in and asks me questions. All are very matter of fact. I am high as a kite. I am very "let's do this thing, folks!" ah drugs. gotta love 'em.

THEN i walk into the OR. The OR. my goodness. It is big and there are lots of metal things and people with masks over their faces. There are lots of shiny, SHARP things. I lie down on a very narrow, paper covered bed.
and: low and behold, Frank Sinatra starts to croon from an unseen sound system. It is too surreal. The anesthiologist bends over me, we exchange some joke about Frankie, and BAM!

***
I am shivering uncontrollably and it really hurts to breathe in because there is like an iron band around my chest. I am saying "I can't stop shivering". People are running around saying "we'll give you something to stop that, we'll give you something for that". This goes on for a while.
Then Gareth is there and I ask him if polar bears have tails. I am very thirsty and am given ice chips.

Soon, I realize I'm in "recovery", and I've lost 4 hours in the OR. I ask to waddle to the bathroom and am allowed to. I seem to be ok, except that my chest feels majorly tight.

I am wheeled into my room, where Gareth waits. Nice room! private, with my own bathroom and a window and phone.

***

I spend 2 nights in the hospital, where I am visited by the Ex, a/k/a Fred, who brings many cool gifts, and freaks out the nurses by putting a sign on my door that says "Psycho."
Gareth comes later and we watch movies.
On May 21, 2006, I go home.

***

On May 30, 2006, I go back to work.
May 31, 2006, surgery pathology report is in. It's a lot better than we thought. Out of 19 nodes, i have 3 positive. Now that's not great, but it isn't bad, and I thought it would be worse. I'm also herceptin positive, which means I can benefit from herceptin treatment as well as chemo. But, I am estrogen/progesterone negative, which means that hormone treatment won't do me any good. So the news is mixed.

During the 2 weeks after my surgery, I've been mostly ok, but I've had some fluid build up in my left breast (the one that had the cancer). At first this freaked me out, but I did some research, and found that it is just a seroma, which is a non-serious complication from mastectomy.
I've had to have it drained by my plastic surgeon 3 times so far, the first time was not so much, the second time was about 400ml, and the last time not so much. From what I read, and from what my PS told me, I'll probably have to get it drained every so often for the next 2 weeks. It's not a big deal, but disconcerting to suddenly have a boob where there was only a preadolescent bump before!

This makes us roughly current.

At first, on bloggrrilla, my main blog, I wasn't talking at all about the cancer. I just didn't want to put it in writing, because that interfered with my almost legendary capacity for denial. But I finally came out of the closet on bloggrilla, and since then have wondered whether to let the cancer fight take over bloggrilla, or whether to keep my first blog relatively cancer free, because I can ALWAYS find other stuff to blog about. This blog is my solution. Here, it's all cancer, all of the time! Heh. well not really, but this will probably detail the treatments and stuff, and my reactions to them. This helps me, and, I hope, will help anyone who happens on this blog, who is facing the same things.

Ok, time to eat now. I gotta enjoy food while I can, I hear chemo makes stuff taste weird. Too bad, because I really like to eat..