August 28, 2006: A Day in the Life of a Cancer Patient

Stacey, our resident cancer patient, had her double shot of Herceptin last week so that she and the fam could go on their yearly vacation to the Cape.  Despite the relaxing atmosphere, Stacey is following a punishing regimen of mini-golfing, beach-strolling, mystery reading, giant sea-bug eating, and at least two hours of lounging per day.

Sad, really.

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Friday, August 25: Chemo Treatment #8

The eigth and final scheduled visit to the Chemo Cafe this week was long and, you guessed it, boooooring. Stacey was there with one other woman who was also having her last Taxol treatment, much celebrating all around. Because of her vacation next week, Stacey also had a double shot of Herceptin this week, which took extra long, so she was there all day. I’ll have to check again on the actual time count, but let’s just say that it was too dang long. I’ll have a detailed report of medications and other technical stuff in the coming days.
This week was ok until yesterday when the aches and pains set in with a vengeance… well, ok, maybe just with crankiness. Stacey’s legs and feet hurt a lot and she felt just generally crappy. I stopped by yesterday and she wanted to show me something strange that was going on with her fingernails. She had said that the woman at work told her that the skin around her fingernails turned dark and it felt as if her nails were going to come out, so I was expecting something pretty gross, I’ll admit.

OK, I’d just like to point out here that in Stacey’s own words, she is “a bad girl.” Not that she is bad, but that she is bad at being a girl. You know that song “I Enjoy Being a Girl”? Well, not so much. All that hair and makeup and schmantzy clothing stuff, no interest in any of that since early college. This is not incredibly surprising, given that the fashion industry (on which I have many and negative opinions, I’ll try not to get started) has informed her consistently and in no uncertain terms that no matter what she does, a person of her body type is unacceptable. No wonder she finally said “screw ’em!”

So, along comes this cancer thing, patently unfair, but here’s the funny part:

(yeah, cancer, twitter twitter, that’s real funny, Deb)

The funny part is that the side effects that make other people look worse make her look gorgeous. OK, can’t really get around the hair thing, although the “Can’t Fail” Scarf by Mary Ann Weiss at CJ Hats makes a medical necessity into a fashion opportunity! But I digress.

I’ve already mentioned how great her skin looks. I mean, great. Frankly, I can tell that she looks a little pale (not that she’s generally the swarthy type: I got all of the Henri genes, she’s got the rosier Gibbs thing going on.) But to all the world she looks like a smooth-skinned, rosy-cheeked maid. With an endearing scowl. And a hand raised to… hey, wait a minute… OW!

Geez. Try to give a girl a compliment.

Anyway, she showed me her nails:”So, it’s weird, the skin here… is that called the cuticle?”

(Pause.) “Yes, Stacey. That’s a cuticle.”

“So the skin here is all, I don’t know, gone. It used to be all sort of up on my nails and raggedy, and now it’s all smooth like this.”

I swear to Durga, it looked exactly like a ‘spensive manicure. Even the fact that her nails are not growing at all now, combined with the long-standing nail-biting thing, has left her with slightly short but perfectly smooth, rounded tops, and her cuticles look just perfectly perfect. Again, we know that they are not perfect, that they are in fact stunted, but they look marvelous!

If this were someone else, I might be inclined to growl at sudden perfect skin and nails. But given the givens, I am more inclined to say Ha! And, Ha ha HA! And take THAT, stupid Fashion Industry! And, most emphatically, Screw ‘Em!

August 22, 2006: Oh, And By The Way…

… in reference to the Durga post, Stacey would like me to clarify that she did not, in fact, say “no.” Her actual response was even more in keeping with the general righteous indignation theme and consisted of two words. The second word was “that!” The first word started with “F”. It was not “Fudge”.

August 21, 2006: Special Guest Blogger… Sara!

OK, I should probably call her an Inadvertent Special Guest Blogger, because all she did was send out an e-mail and I plunked her up here. In my defense, it was a mass e-mail and she did mention righteous indignation, so…

Sara Schaeffner (friend, neighbor, one of those mysterious athletic types) sent out the following e-mail today:

Friends: please register for the upcoming Susan G. Komen Breast Cancer Foundation Race for the Cure! It’s a great cause (I am volunteer Chair of the Massachusetts Affiliate for the Race) and it directly helps in the fight to eradicate breast cancer right here in Massachusetts.

I participate in honor of my mother who is a 7-year survivor and for women and men battling this disease everywhere! I’m sure you have a survivor in your life too; we all seem to know too many people close to our hearts who battle this disease (and who will conquer – do I hear some righteous indignation?!?). This day is a great celebration for survivors, families of survivors and for people who deserve a great day to be remembered.

For more info, go to http://www.komenmass.org/race/index.php

Hope to see you there! – Sara

P.S. If you can’t run…

you can donate your time
or you can donate your money

(I’m half-way to my goal of raising $1500!)

Thanks!

In my role as myself, I hesitate to ask for more money from those of you who gave so generously to my Relay for Life walk this year. In my role as Stacey’s Sister, however, I have no shame: get out those wallets, people! We’ve got a disease to cure here! And thank you very much.

(Plus thanks and gawps of admiration to Sara!)

August 20, 2006: The Snazzy Surprise!

If you know Stacey, you know that she is about as sentimental as compost. If you know her really well, you have begun to suspect that under the compost she is as mushy as a banana slowly turning into compost. OK, that’s actually sort of gross, but you get the picture.

I’ve mentioned this before, that whenever someone does something nice for Stacey she is very gracious and appreciative and all that, but don’t be disappointed if she doesn’t squeal and jump up and down and cry and hug you… you’re laughing now, just trying to picture such a thing, aren’t you? Yeah. Like that. It’s once she is out of the public eye that she gets all sappy about stuff like that, and even then it’s pretty subdued: “People are being really nice to me!”

So even I was a bit surprised by the tone of her e-mail when she wrote to tell me about the snazzy surprise:

“Check this out! (I hope the attachments arrive) These are the people in the main office of Michael’s company. They made me a freaking quilt, isn’t that, like, WOW?! Each square was made by a different person and then one lady put them all together.

This shall be featured in the blog. I command it!”

That right there, after the WOW? The question mark/exclamation point combo? That’s called an interrobang. Love ’em or hate ’em, you must admit that they express a level of emotion uncommon among my people.

So anyway, they did! The good people of Navarro…

…got together and made Stacey a quilt! This was an astonishing thing to do, not just for the normal reasons (quilting takes skill, designing a quilt takes talent, getting a whole lot of people to collaborate on designing a quilt takes… I don’t know, a bullwhip?) but also for its complete and total appropriateness. I don’t have all the details, but I believe that these three folks led this effort:

Except apparently the woman in the white jacket didn’t get her quilt square in on time…

That’ll teach her — you don’t tug on Superman’s cape, and you don’t mess around with Noogie Man.

I don’t know how widely known this is, but Stacey is an extremely crafty gal. I don’t mean sneaky (although… no, just kidding) I mean crafty in the canning/soapmaking/cross-stitching portraits of Henry the VIIIth sense of the word. No one appreciates craft like the crafty, of course, so this is an overwhelmingly excellent gift. Any old quilt is very nice indeed, but a quilt with personal messages and an extremely groovy flower border and all the perfect Stacey colors including purple flannel for the backing (mmm, purple flannel…) — that kind of quilt is a magical thing to have:

“No thanks, no more chemo for me, I’ve got a QUILT!”
“Oh, yes, I see! Well then, off you go, have a nice day!”

Would that it were so. But ’tisn’t, so we head out of a very uneventful and healthful Bounce Back Week #7 (a little achiness on Friday and Saturday, and the base of her left foot is a bit numb, but not tingly. Odd.) into Chemo Treatment #8 on Tuesday.

Treatment #8 is the last scheduled visit to the Chemo Cafe; after this there are a bunch of tests to see how successful the treatment was, and a bunch of meetings to decide what comes next. There are a lot of positive signs: there is no swelling and Stacey feels no pain in her liver; she feels no pain in her hip (TFDs keep asking about this as if they can’t quite believe that the pain is entirely gone); the breast swelling has gone down a lot; the tumor has gotten smaller. Until this point, TFDB has not said anything about how further treatment is likely to go, and this leaves the possibilities so wide open that they are, as you can imagine, fairly nerve wracking to contemplate.

Thank God for purple flannel.

August 14, 2006: The Power of Righteous Indignation

I would like to start by saying that I totally swiped everything on this page from Lotus Sculpture. “But why,” you ask with that quizzical look on your face, “did you swipe it if you were going to admit to your swipery and give us a link to their site anyway?”

“Because,” I say, “there…” oh, wait, I can just say that.

Because there is the distinct possibility that you would not click on it, isn’t there? And if you didn’t read the story of Durga and the Buffalo Demon, you couldn’t understand the whole Righteous Indignation theme. And if you don’t get the theme, you can’t participate in the… well, the thing. I’ll tell you about it later. Just read the story, ok? It’s really good.

The Hindu Goddess Durga, the Unconquerable Form of Devi

Durga is the most splendid manifestation of Devi. Virginal and sublime, containing within her the power of all the gods combined, she is the invincible power of Nature who triumphs over those who seek to subjugate her.

(So this rocks already, yeah?)

Durga and the Buffalo Demon

The buffalo demon Mahisha stomped across the three worlds, kicking up dust, polluting the earth and sea.

Neither Indra, king of gods, nor Kumara, commander of the celestial armies could stop him. In despair the gods called on Vishnu for help. Vishnu confronted the demon Mahisha, first as Narasimha the man lion and then as Varaha the boar, but each time he failed to subdue the demon.

Shiva, the supreme ascetic, was disturbed by the violence and opened his third eye unleashing the fire of doom. Even the power of Shiva’s third eye, capable of destroying the three worlds, could not arrest Mahisha’s march.

“Nothing can stop Mahisha now: he will soon control the universe and make Nature dance to his tunes,” said Brahma the creator.

(OK, pay attention to this part, this is really important…)

“It will never be so, Nature can never be conquered,” said Brahma as his divine strength, his shakti, emerged from his body in the form of the goddess Brahmi. She rode a swan and held books of wisdom in her hands.

Simultaneously, the shaktis of the other gods emerged taking female forms. From Indra, rose Indrani bearing a thunderbolt, riding an elephant, from Kumara rose Kaumari holding a lance and riding a peacock, from Vishnu rose Vaishanavi on an eagle with a discus whirling on her finger, from Varaha came the sharp-tusked sow Varahi, from Shiva came Shiavani riding a bull and bearing a trident.

The seven shaktis, unrestrained by the bodies of the gods, were fearsome beings – unbridled, untamed, restless energies of the cosmos. They would not submit to the authority of any man, beast or god, let alone a demon.

They rose to the sky and merged with each other in a blinding light. The sounds of the conchs, drums, and bells filled the air. With bated breath, the gods watched the light. From the heavenly light arose a beautiful goddess.

“Who are you?” asked the gods.

“I am Durga, the inaccessible one,” replied the goddess. “I am Prakriti, the substance that gives form and identity to all things. I am Shakti, the power that enables all creatures to exist, to feel, think, act and react. I am Maya, the delusion that makes life alluring yet elusive.”

The gods saluted the great goddess. “Give me your weapons and I shall destroy he who seeks to dominate me,” said the great goddess.

The gods acquiesced. Shiva gave his trident, Vishnu his discus and mace, Indra his thunderbolt, Kurmara his lance, Brahma his bow. Then mounting a lion, Durga prepared for battle.

News of Durga, the beautiful goddess who resided upon mount Meru, reached Mahisha. “She shall be my queen,” declared the buffalo demon.

He ordered his two generals, Chanda and Munda, to fetch her.

Chanda and Munda placed the Buffalo Demon’s marriage proposal before Durga. Durga did not reply. The demons viewed this as insubordination and threatened Durga. The mighty goddess responded by swinging her sword, and in one grand sweep she cut off both the generals heads.

The violent rejection of his marriage proposal enraged Mahisha. “Bring that proud woman before me in chains and I shall show her who is master.”

A hundred thousand asuras armed with bows, arrows, spears and swords surrounded Mount Meru, determined to capture Durga. They marched up the mountain… and before long a hundred thousand demon heads were seen rolling down Mount Meru smearing its slopes red.

Durga drank the blood of the demons. Seizing a lute and drum she made music to celebrate her victory.

Humiliated by the defeat Mahisha asked, “Why won’t you marry me, am I not lord of the three worlds?”

“I shall marry only he who defeats me in battle,” revealed the goddess.

“Then let us fight,” responded the buffalo demon.

A great battle commenced. Mountains shook, oceans trembled, clouds scattered across the sky, as the buffalo demon attacked Durga. He rushed towards her, sometimes as a buffalo, sometimes as a lion, sometimes as an elephant. The goddess broke the buffalo’s horns with her mace, sheared the lion’s mane with her lance, cut the elephant’s trunk with her sword.

Weapon after weapon she hurled at the buffalo demon, but each time he managed to rise up undefeated.

Realizing that her weapons had no effect on Mahisha, Durga threw them aside, dismounted from her lion and with her bare hands sprang upon Mahisha’s back. With her tender feet she kicked his head. The demon, immune to the weapons of all the gods, fell senseless at the touch of Durga’s feet.

Durga then raised her trident and plunged it into the buffalo demon’s heart, conquering the unconquerable.

Yay, Durga! So how cool was that? Dude, she kicked him to death with her bare feet! And all because the Gods looked around and said “Hey! This ain’t right.”

A couple of years ago, my Mom and Stepfather brought us a beautiful carved statue of Durga from Bali. As I read the story, I thought “now this is the goddess for me.” Because that’s essentially what we all want to be able to do when something is just patently bad and wrong, isn’t it?
(You see where I’m going here.)

So when Hanley went back to Bali, I asked him to bring back a Durga I could give to Stacey. Because what could be better than the idea that the whole is greater than the sum of its parts when we all feel (say it with me, kids) our Righteous Indignation rising up, and we collectively hurl it at the injustice.

When people ask me how Stacey is doing, I generally say something like “She’s doing very well!” But what I mean by that is something like this:

My sister is one of the most stubborn, intractable, unmovable objects in the universe. When she gets something in her head, that’s it and that’s all. So here comes this Buffalo Demon, threatening to harsh her buzz, and what is her reaction? OK, there was a brief period of freaking out, but then she settled back into herself and said, with her particular combination of understated certainty and unfettered derision, “No.”

No, you will not ruin my life, no, you will not make me whimper, no, I am not wasting brain chemistry on you. You are simply unsupportable, and although I may have to sling a whole bunch of weapons at you, ultimately I will kick you to death with my bare feet.

So this is the thing we’re doing. We are all participating in this uprising, and we’re doing it mostly by acknowledging that the cancer is not as real or important or interesting as Stacey, herself.

Well, at least her feet.

August 13, 2006: The Stacey Report’s New Home

I have imported all of the posts and comments to this blog site because the authoring interface is much nicer. I’d like to say that there will be a huge benefit for you… but there probably won’t be much difference, except that you have to change your bookmark. Sorry, man.

I will be working on recreating the links, tweaking the template, and generally mucking about for a while, so don’t be alarmed if you see some chanes now and again, and please do alert me to any funkiness.

August 13, 2006: Sorry, sorry…

…apparently it’s EPItestosterone, not peritestosterone. Either way, Floyd is innocent.

August 12, 2006: Catching Up (Bounce Back Week #6 and Chemo Treatment #7)

So, after some frantic work, a crazy vacation, more frantic work, and a couple of nasty e-mails from Stacey, we have some catching up to do!

Bounce Back Week #6 went fairly smoothly: some generalized crappiness, muscle aches, and stomach distress (more on that later) but also a lot of working, blueberry picking, gardening, and hanging out.

Floyd is INNOCENT, by the way. Apparently, he does have fairly high testosterone levels, and there was something funky with the test interpretation (has to do with the ratio of testosterone to peritestosterone, which might have been very low for some reason, making the ratio look wonky) and the Tour only sent the first sample to one lab, and sent the second sample to the same lab. Besides, you can’t take testosterone for a one-day advantage, you take it over time to build muscle mass, so if he tested fine just before the race, and incidentally had a rotten day just before he won, then he can’t have been using testosterone. Floyd is a good lapsed-Mennonite boy who has been training for this race for fifteen years: he won, and that’s that.

On to Chemo Treatment #7, which was atually preceded by a visit to TFDJ for a phull physical. The verdict is that Stacey is basically pretty healthy (except for the cancer thing.) Dr. J wants to start Stacey on something to keep her blood pressure down, just to head off any problems, and ordered a skillion blood tests. (Since she was going in anyway, she just had the techs at the Chemo Cafe draw a few extra vials while they were in there.)

The next day, back to the lovely Cafe, where Stacey didn’t even have time to crack a book before she was called in to see the nurse, and then just a short wait to see TFDB. There was just not that much to talk about with TFDB (which is good!) so she went straight on to the Cafe for her Chemoccino (grande, double toxins, nutmeg.)

Stacey did report to the nurse that she had been having sort of a stomach ache, “the kind where it hurts when you press on your belly button, which prompted a lot of people to tell me not to press on my belly button.” Ooh, so helpful! The nurses reminded her that she is supposed to take her Decadron with food because “it can burn holes in your stomach.” Fun! So she got an extra pre-med for the pain (which got a little better but still lasted for the day) then Taxol (cancer poison) then Herceptin (hormone whacker-outer).

She was out of there by 4:30, then went to acupuncture, then home. She felt like she had a few gallons of chemicals in her body (funny thing!) but otherwise basically ok.

We are now heading into Bounce Back Week #7, and Stacey seems in good spirits and good health. Her skin, by the way, looks fantastic! We both have that wonderful Bancroft skin (which Grandma always told us would keep us wrinkle-free when we get old) and Stacey also has trouble with roseacea. So now, her skin is clear and smooth, not oily at all, and the roseacea looks like a tasteful application of blush. “Hey, I should have gone on chemo years ago!” OK, maybe not.

August 4, 2006: Chemo Treatment #6

Stacey’s sixth treatment at the Chemo Cafe went smoothly, only SEVEN hours as you read in the brief report. Yaaaaawn.

First Stacey checked in with TFDB, who said that her white blood cell levels continue to be good. This was a concern: they decided to skip the Neulasta last time, because most women don’t need it when taking Taxol. There was a chance that that decision would backfire, but everything looks good. This is important because if Stacey’s white blood cell count is too low, her chemo treatment has to be postponed until it looks better. The idea is to stay agressive, and giving the cancer time to regroup is not on the schedule.

Now on to the exciting Parade of Medications! Turns out there aren’t 3 or 4 bags of Benadryl, just one. There are 3 other pre-meds; one is Anzemet, which is an anti-nausea (just in case, I guess). Stacey couldn’t remember the other two, but she thinks they were to prevent allergic reactions. Then there was the Taxol, then the Herceptin, then the Zometa.

As we reported after the last treatment, we have launched an investigation into the mysterious process of “cooking the drugs.” We assumed that Newton Wellesley is not running a meth lab back there, so we had to do some investigative journalism to ferret out the real story. This investigative journalism consisted of Stacey, at peril of life and limb, um… well, ok, she just asked. But the nurse, it must be said, was strangely wary. “Why do you want to know that?” her expression seemed to say. Well, gee, you’re pumping this stuff into my blood stream every other week, I kinda want to know what it is! In her defense, it seems that no one ever asks — just us crazies.

So, here’s the story. For most drugs, the process just consists of injecting the drug into a saline solution. However! (and here’s where the intrigue starts) some of the drugs have to be reconstituted from powders, and others take a long time to disperse in the saline. Sort of like when you’re making macaroni and cheese? You don’t want to put the macaroni back in before you’ve stirred all the cheese powder into the milk, because then you get these dusty little blobs clinging to the macaroni? And they’re all salty and gross? Yeah, I hate when that happens.

Oh, right, Stacey. Anyway, she was thoroughly unimpressed with the cooking process, so we’ll try to come up with something more interesting to report on. On the other hand, we might not have a chance because there are only two more scheduled treatments. At that point, Stacey will have a mess of tests and review things with TFDB to decide what the next steps will be.

In the meantime, we’ve found out a few things about the effects of Taxol. Stacey overheard two women talking at the Cafe, and one said that her friend didn’t lose her eyebrows until her last Taxol treatment, but that they grew in a week later. Stacey’s eyebrows are looking decidedly scant these days — I asked what she was planning to do about it, did she want to try some makeup… well. Those of you who know Stacey well can imagine her reaction to that suggestion. She gave me that famous “oh, please!” snark: “If people are freaked out because I don’t have eyebrows, that’s their problem. I have more important things going on.”

And that, ladies and gentlemen, is why IBC picked the wrong gal to mess with.

Coming soon to a Stacey Report blog near you: the long-awaited essay on the power of righteous indignation, and a report on a super snazzy surprise! (No, you don’t need your wallets. Yet.)