June 29, 2006: the Long-awaited Report on the Relay for Life

Usually, the American Cancer Society’s Relay for Life is an outdoor event here in beautiful Sudbury, MA. It’s held on the track at Lincoln/Sudbury High School, with bands, raffle stands, and information booths on the outside, and because the Relay is an all-night event, tents and sleeping bags in the center. The event starts with a survivors lap, a procession of people in purple t-shirts (only survivors get to wear purple) behind a banner, very moving. Then the Relay begins, and for the next 12 hours the track is full. In the dark, the luminaria line the track and guide the walkers, who can no longer see but can sense the other walkers across the track, everyone marking time and distance until the sunrise.

Sigh.

This year, it rained, and the event was held indoors. I’m sure that this must have been done before; this event has been going on here for years. But this is the first year it has been held since the High School was rebuilt (yep, paying taxes for that, sure am) and that may have had something to do with the resulting… well. Here’s the story.

We arrived at the high school a little late, and the opening ceremonies had already begun. We walked into the foyer of the brandy-new gym and came face to face with the back of a crowd listening to a fife and drum corps. (We gotta do the fife and drum thing here in Upper Right Corner, USA.) Then there was a brief but indecipherable speech: the sound system was barely adequate, and the crowd was pretty unruly (although nothing compared to the way it would be later.) The fife and drum corps marched out, bearing down on us, swinging a left just before the front door, walking down the hall toward Gym II.

I will pause here to describe the High School’s new gym: it is utterly massive, a system of tile-floored hallways connecting not two, not three, but four gymnasiums. (or should that be gymnasia?) There are your classic pull-out bleachers, “Girls” and “Boys” rooms, trophy cases, the works. The foyer is basically a wide part of the hallway system, large enough to allow for between-class re-combobulating, but not much bigger.

Ok, got it? Right, here we go.

So here come the fifes and the drums (in full-on Minuteman regalia, mind you. One of the fifers was a woman, by the way, very serious and Yankee-looking with a medium-length, medium-brown bob and no makeup.) After them, here come the Survivors behind their banner, led by V-Squad Team Leader Jackie (yay, Jackie!), looking lovely as ever. Behind the Survivors, the relayers shuffled into line and began to walk down the hall toward… another hall, where we turned a corner onto… another hall, after which we turned the corner into… the foyer again.

Now, this brandy-new gym must have an indoor track somewhere, but they sure weren’t telling us where, and it swiftly became clear to me that, yes indeed, we were going to be walking around and around the hallways instead of on a track. I got the feeling that the last-minute move indoors because of the rain had wapsed up a whole lot of things… this was confirmed when, at about the third lap around, on risers set up three inches from my right ear, an extremely loud high-school band began to play. Each time we turned that last corner, we were blown ever-so-slightly off course by the thrumming vibrations, and when I asked the t-shirt lady what the deal was, she said that they were supposed to set up in another room but this was the only place that had enough outlets.

But, you know, what can one say: I was definitely among the old fogies at this event, the majority of the relayers being high-school students, and good for them, right? They were the ones running the show, apparently, and although many of them were motivated by the prospect of staying overnight with the others of them who were motivated by the prospect of staying overnight, a whole lot of them were absolutely serious and dedicated to raising as much money as possible for cancer research. Of course, this did not mean that any of them were averse to indulging in a very entertaining, hormone-fueled giggle-fest, which is exactly what ensued.

By 9:00 or so, I began to get the feeling that I was the only person actually walking the track, although this sensation was probably due to the lack of visibility. It’s one thing to walk and walk while you can see others walking and walking, it’s quite another to walk and walk through high-school halls, on and on, feeling like you’re in one of those stress dreams where you forgot your homework and you can’t find your classroom and you’ve never even been to class and the exam is tomorrow… you get the picture.

I began to think about why people are motivated to participate in events like this — what is it, exactly, that I am accomplishing by walking around in the new gym hallways? I mean, frankly, I could have asked all you nice people for money and not even gone to the thing. As far as you know, I could be making all this up!

(Stick with me here, kids.)

I thought, the reason you actually go, and run the run, or walk the walk, or pole-vault the… whatever, the reason you go is to have the experience of doing something so that you can feel a little better about not really being able to do anything. You go because everyone else goes, and you all get to have an uplifting, inspiring experience because you’re spitting into the wind together. You go, looking forward to the feeling of gathering with other people who are plain old pissed off at cancer and doing something to fight it, and when such a simple plan suddenly goes all to hell, you know, it’s just flat out disappointing.

I mean… it’s sort of like when you’re going about your business, raising your children, doing your work, planting your garden, looking forward to things that are really not too much to ask, and then all of a sudden something drops out of the sky and screws everything up, something like… jeez, I don’t know, like getting cancer or something.

Oh.

(Right.)

(Still with me?)

And suddenly everything turned sideways, and I found myself looking at a whole different slice of the pie, my friends. When we gathered in Gym I for the luminaria ceremony, suddenly this mob of giddy teenagers and bemused parents became a silent line of witnesses, walking past name after name after name. Among the many others, I saw five or six luminaria in a row, all written in the same hand — how many people had this one woman lost? There were curlique messages to grandmothers, multi-signature encouragements to friends, one stick-figure drawing that just said “I love you, Daddy.” All of these names were people, with plans, dammit, all shot to sugar-honey-ice-tea because of some stupid haywire cells.

But imagining all the families with holes punched through where their mothers and sisters and grandmothers had been wasn’t what really got to me. What really got to me was watching these rowdy, hormone-addled, flat-out irritating kids go silent in the face of life’s dirty little secret: people don’t always get what they deserve.

So. I didn’t stay all night (but Lyle did). I wasn’t patient, I wasn’t understanding, and I made some pretty snide remarks. It was really hot and uncomfortable, and really, really loud, and it was not, despite all the wonderful walkers, uplifting. At all.

So next year I’m going again.

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June 28, 2006: Chemo Treatment #4

Anna, Eva and I stopped in to see Auntie Stacey this evening after supper, and we were told that she was asleep. She woke up a little while ago and is IMing (sending me messages using software called Instant Messenger) as we type. So, let’s do a little interview, shall we?

Stacey’s Sister: So, Stacey’s Sister’s Sister Stacey, how’s it hanging?

Stacey’s Sister’s Sister Stacey: Well, as always Chemo day began with a righteous puking. Empty stomach, though, so it was more like a righteous dry heaving.

SS: That’s called “Anticipatory Nausa,” right?

SSSS: “Anticipatory Nausea” indeed!

SS: That settled down, though?

SSSS: Yeah, once my stomach was empty! Then I shuttled children to and fro, then it was off to chemo.

SS: Exciting!

SSSS: Oh, shut up.

SS: Shutting up.

SSSS: TFDB gave me a prescription for “Miracle Mouthwash” (it’s really called that, it’s a specific compound, so they have a stamp that tells the pharmacist the ingredients and the heading is “Miracle Mouthwash”) to prevent and heal mouth sores. Not sure if that’s better than Mouth-Sore Goo, or what.

SS: But it says “miracle” right in the name, it must be better!

SSSS: Remember what I said about shutting up?

SS: Right.

SSSS: Then on to search for my good seat for the poisoning. Only one person in the favorite room, who would leave in a half hour or so. After that only one other person came in for about a half hour. Otherwise I had the room to myself. It was so nice and cool in there! Had Zometa, so it was about 3 1/2 hours.

SS: So you got the really toxic one they have to push in by hand…

SSSS: Right, Adriamycin.

SS: …and then the less-toxic-but-who-wants-it-anyway one…

SSSS: Cytoxin.

SS: …and then the Zometa.

SSSS: Right, that’s the bone glue. I only have that every other time. Then tomorrow I go back for a shot of Neulasta, which is really helping my white blood cell count stay nice and high. Oh, and I also got a shot of Procrit today, that’s for my perpetually low iron levels that nobody should worry about because I’m always anemic.

SS: Ok, but isn’t that the one that hurts a really lot?

SSSS: It sure is, baby.

SS: Sorry, man.

SSSS: Thanks. Anyway, I’ve been feeling crrrrrrraaapy since: just feeling full of poison, feeling like an impending headache, hot and sweaty (which TFDB attributes to hot flashes from the whole hormone issue, but if so then it’s less like a flash and more like a constant, blech). Came home and slept for an hour or two. Appetite is ok.

SS: So if history is a guide, you’ll feel ok tomorrow and then terrible for the next two days, with the Bounce-Back starting sometime over the weekend.

SSSS: Right, except that we’re off by a day this week, so I’m not expecting to bounce much before late Sunday or Monday. Unless history is also a guide to the fact that each treatment has been a little easier than the last so far.

SS: That would rock!

SSSS: It sure would.

SS: Well, Stacey’s Sister’s Sister Stacey, it’s been a pleasure talking with you this evening, and we hope you’re bouncing soon.

SSSS: Thanks, Stacey’s Sister, and I’d like to say to all your readers that I’m jazzed you’re all checking in so often, it really helps.

SS: Ok, that’s a little mushier than our format will allow, I’ll have to cut you off there. Goodnight, everyone!

June 27, 2006: No Chemo For You, One Year!

Oh, would that that were true. And would that chemo were The Soup Nazi’s Crab Bisque. But alas, the chemicals are the same (hey, what do you think intravenous crab bisque would do?), just the timing has changed. (I mean, there’s nothing in crab bisque itself that would kill a person, right?) Generally chemo day is Tuesday, but this special week it has been moved to Wednesday, so we will be reporting on visit #4 to the Chemo Cafe as soon as we hear from our heroine. (Chunks. Crab chunks. I bet those wouldn’t be too good, huh? I wonder if anyone has ever come into an emergency room with, like, an intravenous crab chunk coma? Pretty bad deal for that guy, I tell you what!)

June 25, 2006: Guest Blogger, Johanna Dees!

But first, a quick update from Stacey:
The mouth tingles are better, but we are adding to the Things I Learned from Chemo list…

The Things I Learned from Chemo, Thing the Fourth:
If you are going to prepare soft-shell crab for dinner, make sure to get the loose ones rather than the individually-plastic-wrapped ones. That way, you’ll catch the smell little by little, rather than all at once when you start unwrapping them, and you will have a lot more warning that the little buggers are going to make you….uh oh…. BLLLAAAAAAHHHHH! Oh, dear, yes, right in the sink, no time to get to the powder room.

Hey man, like I said, I don’t make the news…

OK! On to better and brighter things, and here is our special showcase from the lovely and talented Johanna Dees!

(by the way, Johanna calls Stacey some very odd things here, and we have no information at all about the meaning or origins of these names. So everyone pester Johanna about that.)

—————————————-

After hearing that you were beginning to lose your hair and not enjoying the wig fittings, I was inspired to make your life a bit easier. I have done a little research and discovered a handful of fabulous wig styles!

Turban? Not for Mrs. Smellthat! You will strut the streets in style with these fabulous looks. I have also created a brief synopsis of how your life might have turned out had you sported these
hairstyles of your own volition from an early age. (Please forgive my photoshop skills or lack thereof.)

The Cassie: “You want more ketchup with them there fries?” That’s right! Sporting the Cassie ‘do, our little miss Spacey Smellthat would have ended up slinging hash at only the finest of the Big Bubba’s Truck Stop Havens!

Elvis: “Thank you. Thank you very much!” This one speaks for itself. Elvis impersonator extraordinaire!

Fancifree: “Please hold while I connect your call.” Footloose and fancifree is the motto for our little miss Telephone Operator Nested. (Note this hairdo goes much better with Nested than with Smellthat.)

Marilyn: “Hhhhhappy birthday, Mr. President…” Rrrrrrrrrr. Watch out Jessica Simpson. With this hairdo, Stacey was sure to become America’s hottest, cheatin’-ist, favorite-est…. well, whore!

Paula A: “You moved me and made it your own. America loves you.” This one could be a blessing and a curse. With this stylish coif, Stacey would have become judge and jury for the next American Idol.

And lest you feel totally picked on by being the only one with hair enhancements, here is a lovely photo–both in color and black and white (one for the office and one for above the fireplace)–of everyone celebrating the magical joy of hair!

 

Ladies and gentlemen, the lovely and talented Johanna Dees! (Wild applause, hooting, cat calls, throwing of hotel room keys… Duck, Johanna!)

The next updates have been delayed by actual work here at the Stacey’s Sister publishing house, but stay with us as we contemplate the Relay for Life, the power of Righteous Indignation, and a splendid surprise! (Don’t put away those wallets!)

June 23, 2006: Bounce-back Week #3

Stacey’s third chemo treatment went pretty much as expected: she felt ok on Chemo Cafe Tuesday and Wednesday, felt horrible on Thursday and Friday (she didn’t even want Dunkin’ Donuts, that’s how horrible) and started to feel better over the weekend. Bounce Back Week #3 has been fairly smooth sailing.

This is actually incredibly good news, because we had heard from a lot of sources that the third treatment is the worst, but each one has been a little bit easier for Stacey. This we attribute to the power of Righteous Indignation (and more on that later. Oh, much, MUCH more on that.)

Stacey reports that she is starting to feel the longer-term side-effects of chemo, namely the beginning tingles of mouth sores (she will ask for a presription for… um… mouth-sore goo. That’s actually the formal name of the medication: Mouth-Sore Goo. Merck, I think.) She also had a feeling in her tongue, as if she had burned it. There may be another explanation for that. Possibly that she burned her tongue. Funny thing.

There are other strange, transient symptoms — sore throat, shakiness, headache — that might be chemo-related or might be being-alive-related. I mean, who doesn’t feel like that from time to time? This is part of the trick, I guess, of managing treatment so that it isn’t your entire life: it’s a pretty intrusive kind of a thing!

This week, Stacey had a check-in with Dr. Browne and everything continues to look good: TFDB said that the peau d’orange (an effect from the swelling) is almost gone, and that she can barely even feel the lump (which started out at 4cm). She also said that Stacey’s white blood cell counts look great, which is good news because people whose white blood cell counts look less than great often end up in the hospital with unpleasant infections of one kind or another. Something to avoid, if at all possible. Stacey’s white blood cell counts haven’t gone down at all, which TFDB attributes to the Neulasta shots Stacey has after every treatment. (And also the power of RI!)

Stacey’s hip is feeling better this week (the pain has been coming and going) but she’s thinking of getting a handicapped parking sticker so she doesn’t have to park too far from things. In other news, I will be going shopping with Stacey more often.

And to those who worried that “no news is bad news,” thank you for sticking with us, and I’d like to say that that’s rarely the case in our family. We’re the ones who assume that everyone got home safely if we haven’t heard from the highway patrol. However, I will be more diligent in future, and in particular I have several updates coming over the weekend including:

A detailed report on the Walk For Life
A fashion show from the smart and fabulous Johanna
An ode to Righteous Indignation
and…
A special surprise! Hint! Get out your wallets again!

June 16, 2006: Heading into Bounce-Back Week #3

Overall, Stacey says, this week is not as bad as Week #1. Or Week #2. But, you know, it’s not especially excellent, either: gotta lower your expectations when you’re processing a big pile of poison, I guess. She’s feeling tired and… queasy? gaggy? pukey? how to explain? It’s an odd feeling in her throat, with occasional surprise dry heaves, lots of acid. A very strange situation, but better than actual puking.

Hey, folks, I don’t make the news, I just report it.

So rather than thinking about the end of Chemo week, we’re projecting forward to the beginning of Bounce-Back week, and planning elaborate Indian food feasts in celebration of Father’s Day and Michael’s birthday. The actual number of this birthday may, in fact, be a state secret.

So, we leave Stacey chuckling over “Best of Carson” on Comcast On Demand, and wish her a happy brunch at Mel’s.

June 15, 2006: Stacey’s Report from the Chemo Cafe, Visit #3

An e-mail from Stacey, who says she is feeling “pretty pukey” today. Trip to the yarn store is postponed — they tend not to love it whe you puke on the pricey hand-dyed nubby silk. (On the other hand, a little puke on the Red Heart One-Pounders at Walmart might get you a 10% discount! Just thinking out loud…)

Stacey’s report:

Started with blood work et al. Dr. B said that everything looked great, but I ended up having to get a procrit shot for low iron. I didn’t have to last treatment because I was above the magic number. Must remember to take my supplements.

As I mentioned, she asked about mouth sores. I told her about one spot, but I think it’s more of a bitten cheek that swelled up and kept getting bitten. It’s mostly healed now. She didn’t see anything else and said that she’s just about run out of things to check out. Which is a good thing.

Then, on to the big fun. I got a seat in my favorite room again. Yay. Only about 3 hours now. I realized something, which I’ll call

Things I Learned from Chemo, Thing the First:
Don’t look when the Adriomyacin is being delivered. This is the nasty drug that can burn if it touches the skin. The nurses have to inject it into the tubing by hand from 3 big vials. They push it in at a steady rate, and have to stop every now and again to check that there is good blood return. The first week I watched it going into the tubing (and, from there, into my body). The second and third weeks I didn’t watch and I think that’s the better option. Watching made me feel more queasy. If I don’t see it going in then I can pretend that it’s not in there. So, lesson learned.

Things I Learned from Chemo, Thing the Second:
When my hair was falling out by the handful, I noticed that it was the thicker (older?) hair. Now that it’s pretty much gone the hairs I see coming out are very fine. Newer hair? Not as likely to give up the ghost? Not sure, but it’s interesting.

Today I had to go back for my neulasta shot. Got through vitals very quickly, then on to see one of the Nurse Practitioners. I told her about the sneezing and post nasal drip which is not dripping post nasally, but pre nasally. She said to keep an eye on it to see if it develops more. I also showed her the infection on my finger. Again, I’m to keep an eye on it to see if it gets worse. She didn’t want to give me any anti-biotics yet, with which I concur; don’t want to mess up other things if I don’t have to.

Things I Learned from Chemo, Thing the Third:
At this point in chemo the body stops healing itself as quickly as it does normally. Thus, my legs are full of small dots from acupuncture. They’re not infected or anything and I get the same kind of thing from when they do blood draws, but it’s kind of interesting that my body can’t even heal such small things as quickly as it used to. That’s why they warn you about keeping away from sick people and protecting yourself from getting cut/injured. Even small things can be a big deal. Scary.

June 14, 2006: Chemo Treatment #3

Treatment #3 went off uneventfully, and although Stacey can feel exactly when it’s time to take the next dose of each anti-nausea drug, she says that she feels strangely well. This may shift around over the next few days, but for the time being the drugs are not taking too much of a toll. As Dr. Browne predicted, Stacey’s weight has stabilized as she has discovered that snacking every few hours helps to keep the nausea at bay.

The random food aversions persist, but Stacey is able to eat full meals of whatever does not make her want to puke, a fairly reasonable arrangement for the time being. I did not get a report on the check-in with Dr. Browne, but if Stacey’s mood is anything to go by, I have to assume that the news continues to be good.

The search for the perfect hat continues tomorrow with a visit to the new fancy-schmantzy knitting shop in town, looking for a light cotton yarn that will work with Janet Szabo’s famous Chemo Toque pattern. Sigh — it’s a sacrifice, but I guess if I have to go, I have to go.

June 12, 2006: Getting a Little Picky

Stacey, avid reader of The Stacey Report, has some clarifications re: her physical state lately. (She doesn’t like it when I quote her at length, by the way, says she hired me for a job and I darned well better do it. But this is as nice a summary as I could pull off and apparently more accurate. Snark snark.)

While I do feel better than I did before chemo started (mostly in the back), I was trying to express that I’m feeling better now than I did in the good week after #1. So:

Chemo week 1: queasy, food aversions, no appetite, tired, touchy gag reflex
Bounce-back week 1: some puking, food aversions, more appetite & energy, touchy gag reflex
Chemo week 2: some gagging, better appetite than #1, more tired than #1
Bounce-back week 2: still better appetite, fewer food aversions, much better energy, still with the gag reflex (resulting in some puking, but not much)

So, Bounce-back week 2 was better than Bounce-back week 1, which is good.

I puked this morning and am feeling a bit queasy. I’m attributing this to thinking about tomorrow, which I keep telling myself I shouldn’t do, but it’s hard not to.

that is all.

So that is all! Chemo treatment #3 tomorrow, which includes a check-in with TFDB (The Fabulous Dr. Browne) so we’ll see where we are.

In other news, I’ve been busily staring at Stacey’s head, mentally designing scarf-like objects. The main issue now is shape — some scarves end up too “pirate-y” and Stacey is convinced that she won’t be able to pull off the world-music-funky-wrappy-scarf look that I keep espousing. It looks to me that one needs to set the front edge of the scarf just below the natural hairline, have some kind of detail to draw the eye up to the top of the head, and also have some mechanism for covering the back of the neck (because the tie on a scarf settles under the back of the skull, which is not the same thing.) All suggestions welcome!

June 10, 2006: Brief Report from the Relay

This is a very brief report of the good news from the Relay for Life. Stacey’s Sister, Son, and Stepfather, thanks to your humbling generosity, have raised a great big pile of money for cancer research, to wit:

Stacey’s Sister: 550.00
Stacey’s Stepfather: 375.00
V-Squad Total: 1707.00 (I want to know who donated seven dollars, because that’s just cool)

Stacey’s Son: 300.00
X-Men Total: 1980.00

So that’s a grand total of 3687.00 toward a cure thank you very much! I would also like to point out that Mr. Lyle’s team did, in fact, trounce.

More detailed report of the event in the next few days — it was extraordinary in many ways.

Stacey is feeling surprisingly well as she bounces back from chemo treatment #2. As a matter of fact, she said that she feels better now than she did before chemo treatment #1 (owing to decreased pain and swelling.) In less lovely news, her hair continues to disappear in ways known only to herself– in the actual event, it has been easier to keep the process private. Tonight she was cheerful and goofing with Ruby, if a bit creaky in the hip (this from excessive lounging.)