The Stacey Report

March 8, 2007: Something Actually Happened!

Posted in Uncategorized by dbancroft on March 10, 2007

After some time of boringly normal treatment and no new tests, Stacey reports…

(and no, I should not be all jazzed about this because it is actually a big drag)

some swelling and soreness in her left arm.  It’s on her inner arm, just below the surgical site.  Now, I know what you’re thinking: “Oh, that’s probably lymphedema!” Right?

Well… right.  TFDB wanted to check it out to be sure it wasn’t a blood clot which feels exactly the same, apparently (which seems like a really terrible system, if you ask me.) So Stacey won a free trip to Newton Wellesley for a Doppler Ultrasound of her entire arm (neck to elbow) and everything looked AOK. 

So what do you do about lymphedema?  Well, if it’s severe, treatment involves all kinds of pumps and Manual Lymphatic Removal or some such upsetting thing.  But Stacey just has some slight swelling, and the definition of Mild Edema is that the difference in circumference between the affected limb and the healthy limb is less than 4 cm.  I would hazard a guess that Stacey’s arms are still a pretty good match.  So what she needs to do is go have some physical therapy, learn some exercises (which might be done with compression) to keep the swelling down.

Yet againm we dance a Jig O’ Joy that this is relatively unexciting. 

In other news, Stacey’s Sister prepares another golden opportunity for you to whip out those wallets!  Here’s a hint: it’s sort of like last year’s Relay For Life.  Except way, waaaay crazier.

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January 22, 2007: …Oh, Except for a Touch of Pneumonia

Posted in Uncategorized by ohthatdeb on January 22, 2007

Stacey’s weekly Herceptin and monthly Zometa treatments are continuing as scheduled, with the Herceptin at 80%, the only possible change on the horizon being that TFDB might bring the Herceptin treatment back up to the full dose after…

Yet Another Bushel of Fabulously Boring Test Results!

Stacey’s most recent cardiac echo shows her heart function back up to 60% which, scroll down to Deb’s heart function rant, is probably better than yours is, bucko. Grand prize? A full weekly dose of intravenous hormones! (Cue balloons & confetti) “I just…” (sniff, sniff) “…I just don’t deserve it!” Nooooo, you don’t, but get on into that treatment room, Missy!

The other cool test that just came back is the follow-up PET scan. In our last episode, Stacey had a PET in which three areas mysteriously “lit up” or showed activity that might possibly indicate cancer. TFDB said (and we do not quote) “Feh,” but being the FD that she is, sent Stacey for all sorts of follow-ups anyway. One clear mammogram, one clear dermatological exam, and one clear thyroid ultrasound later (in addition to ongoing A-OK liver function tests) — and here we are at the follow-up PET scan which was… completely clear!

Of cancer.

There was, however, just a smidge of, um, pneumonia. Which might, thank you very much, explain the three months of lung-hacking that Stacey’s been doing (and yes, all the FDs have been listening to her lungs and not hearing anything scary). It is also an interesting development considering that Stacey is one of the only people I know to have received a PNEUMONIA SHOT this winter. Fabulous!

So, let the antibiotics fly, and may the cough fly away too. Stacey has felt quite well otherwise, yet another testament to the Power of Righteous Indignation (“Pneumonia? Oh, please…”)

January 4, 2007

Posted in Uncategorized by ohthatdeb on January 5, 2007

What’s going on? Why the long silence?

Well the long silence because really not much has been going on! Things have been going yaaaaawningly well; since our last set of stellar reports, Stacey has been much more interested in Christmas shopping and searching for chocolate tree ornaments. Did you know that almost no one makes these anymore? This was a huge tradition from our childhood: we’d go to bed on Christmas Eve, the tree looking just about as festive as one could wish, and wake up Christmas morning to a tree that had just exploded into joy and yumminess, all kinds of goodies all over. Next year we’re going to have to make our own.

Anyway, things look to be getting a little more interesting (not in a bad way, just in a “things to report on” way) Here’s a recent report from Stacey via e-mail:

I’m back to weekly visits for Herceptin. She’s doing 80% doses, presumably to avoid the whole heart thing. I mentioned to her the other day that the nurses were having a hard time finding my one vein for blood tests (and ended up using my hand…yuck!) and she said that not only do they not need to do weekly draws, but that they can send me over to the infusion area where they can access the port and draw the blood from that. So, now I only need to do the blood draws on the weeks that I get the Zometa. Score! I also got a flu shot (Dr. Johnson wanted me to have one, but wanted me to check with Dr. Browne first) and now my arm is red and swollen in the inches around the shot site. Not so score.

Next week I have an appointment with Dr. Johnson, just to check up on the blood pressure, and my weekly treatment. The week after I have another PET scan, an echocardiogram, and treatment.

Stacey has had all of these tests recently: the echocardiogram is to check that her heart function is still good, at which point I am assuming TFDB will go back to the full dose (but that’s just me).  The PET scan is to follow up on the three areas that “lit up” on the last scan, all of which TFDB thought were anomalies and none of which behaved suspiciously upon further examination.  And treatment is treatment: Herceptin (the fake-out hormones) and Zometa (bone glue!).

And a special Stacey Report shout out to our uncle Chris, lazing on the couch in Cali.  At least, he’d better be lazing on the couch…  Hey! Put down those skates!

December 13, 2006: “These go to 11.”

Posted in Uncategorized by ohthatdeb on December 13, 2006

So, let’s start with the dermatologist, who was thoroughly unimpressed with Stacey’s back: “Well, I don’t see anything…” She did remove a few moles just ’cause why not, and those went to the lab because everything goes to the lab. The moles weren’t in the same spot as the “light-up” from the CT/PET scan, so not only are they not the problem that the scan thought it saw, but the scan didn’t see a problem where these were. So there. (I say that a lot, I realize now. I suppose that shouldn’t be a big surprise. So THERE, cancer! HA! and ha Ha HA!!)

OK, now the cardiac echo, where there is the very excellent news that Stacey’s heart function is back up to 55%, which means that she can go back on the Herceptin.  Woo hoo! The Herceptin, as I’m sure you all remember (because what could be more diverting than memorizing the names and actions of oncology meds) is the fake-out hormone that will rush into the receptor sites of any remaining cancer cells with every sign of acting like real hormones (“Ready? OK! Lets see some spirit, lonely little cells, we’re gonna go take over some major organs!”) but then act like, well, really real hormones (“Ohhhh flop!… I am so tired.  I really want some pretzels. click click click Ooh, look, PBS is showing a Blackadder the Third/Bertie and Wooster/House marathon!! I’m not moving from this couch for the next six years.”) 

This is exceptionally good news because this is the treatment that not everyone responds to, but Stacey does, and it could concievably keep the little cancer-cell buggers (should there be any left) confused indefinitely.

OK, fine, but here’s the thing.  Stacey’s heart function right now is 55%.  The concern last time was that it had gone down to 45%.  I was in error when I said that the chemo had caused it to go down to 65% initially — Stacey told me that it was 65% to start with, and went down to 55% when the Herceptin was doubled, 45% when it was tripled.

So if you’re like me (and if you are like me, no, I have no suggestions for you. Why do you think I’m still like me?) you’re thinking “Oh good gravy, my sister’s heart is barely functioning, it was only at 65% when she started waaah waaaaah blabawablabawaba!!” Right? Uhm… right?  Well, whatever, it sounds upsetting.

Except get this: guess whose heart function is at 100%?  Go ahead, who has a heart that is in top shape, functioning as it should be?  NOBODY.  Nobody has 100% heart function.  And they knew that when they set up this measurement system in the first place — is that not the dumbest thing ever?  It’s like the speaker scene in Spinal Tap, but in reverse: instead of picking somebody like Lance Armstrong or some insane cave diver and measuring that heart function at 100%, they set everything at some arbitrary number: “Yooouuu?  Let me see.  You look like… a 57.3%  That’s a good number for you. Brings out your eyes.”

I’ll tell you, if they want a nominee for the 100% heart function, my girl is Lyubov Denisova (Rus.) Who just set a crrraaaazy new record for the Honolulu marathon.  Check this out: chick ran 26 point something miles, right?  26 miles.  In?  TWO HOURS and 27 minutes!  (and 19 seconds)  Holy holy holy Lord God Almighty, and I mean that in the most respectful sense because how does this machine called the human body DO such a thing? Yeah, so some guy from Kenya did it a little faster, so what, Kenyan runners do that every day plus a Wednesday matinee. Just LOOK at this babe:

(And of course I also mean “babe” in the most respectful sense.)  Dang-a-lang, it takes me two and a half hours to clean my kitchen!  And I schmertainly don’t look like that doing it! On the other hand, do I really want to live the kind of life that would allow me to wake up one day and run 26 miles in two and a half hours?  Really?  I mean, I have no time to read as it is. And I bet there is no place for Fluffernutters in a life like that. 

Now LEST someone in the know decide that I am a complete dunce or, worse, completely without Googling skills, I will elaborate on the actual factual facts of heart function, to wit:

The percentage measurement is not the percentage of potential efficiency at which your heart is operating, but the percentage of blood your heart pushes out each time it pumps.  It can’t push 100% of the blood out because that would mean that the entire muscle would have to clamp down on itself like a canning lid, and that would be impossible  (not to mention extremely uncomfortable).  So, in that scenario, one can imagine that pumping out 65% of the blood is actually pretty darn good, which is what everyone told her at the time, which is what I (and thou) would have known if I had just listened to Stacey for once in my life! Or so she says.

November 28, 2006: Catching up with Stacey’s hair

Posted in Uncategorized by ohthatdeb on November 28, 2006

OK, first of all, STOP VOTING! I know, I did leave that there for a while, and I’m glad you’re all paying attention, but various election boards have reported small but persistent clusters of late voters and they’ve traced them back to this site. It’s very flattering, I must say, but these people keep calling me and, really, you gotta knock it off.

Next, we must report that Stacey’s hair is looking quite lovely, growing in thicker by the day (we have good hair genes in this family, I must admit.)

Following up on various tests, scans, and other procedures:

  1. The surgical follow-up mammogram was clear: nothing exciting there (which is good.)
  2. Thyroid: the scans for the thyroid were clear, except for some sort of goiter that is not cancerous and is not a cause for concern. Stacey was not exactly clear on all the details: it’s not cancer. That’s the important thing. She’s going to ask TFDB about it again at the next appointment.
  3. On December 4th, Stacey has an appointment with a dermatologist to check out the place on her back that “lit up” in the PET/CT scans.
  4. Also on December 4th, she will have an echocardiogram to check out her heart function. The hope is that it is back up to a level where she can go back on the Herceptin. Until then, she has been getting just the Zometa (bone glue) but not the Herceptin (hormone decoy suff). Fingers crossed on that one.

November 7, 2006: Voting Day!

Posted in Uncategorized by ohthatdeb on November 7, 2006

This is The Stacey Report reminding you to vote early and vote often!

Fur or agin it, ya gotta be in it!

November 5, 2006: May you live in interesting times…

Posted in Uncategorized by ohthatdeb on November 5, 2006

I was leaving Acupuncture Family Practice in Sudbury MA (978-443-6789) this morning, and who should I see walking in but my sister Stacey, and what should I see atop her head but… hair!  Unadorned!  It’s very very short hair, granted, but long enough to wear out and about in the world.  I did the Ancient and Hallowed Hair Celebration Dance of the WASP People (you can probably learn this for yourself at a WASP festival, a yearly event where our people gather for coffee hours, brisk walks, and a traditional book-swapping game called “Oh, you must read this!”)

But should anyone feel a lack of interesting medical news, here’s the latest:

Stacey had her appointment with TFDB to check out the anomalies from the very good PET/CT scans. There were actually three areas that “lit up” indicating areas of possible concern: the breast, a small spot on her back, and her thyroid.  TFDB said that she didn’t see anything suspicious on the breast, so she said that she wanted to repeat the PET scan in a month.  She’s not sure what’s going on with the area on her back, so she’s setting up an appointment with a dermatologist to check that out.  And an ultrasound to check out the thyroid.  And a mammogram as a follow-up to the surgery.  Oy vey!

In other news, a recent echocardiogram showed that Stacey’s heart function is down to 45%.  I realize now that I should have been reporting this all along because that number sounds pretty shocking, but it wouldn’t sound so very bad had I told you last month that it was at 55%, and 65% the month before that, et cet.  This is something that happens when you pump your body full of really nasty chemicals, and one of the ways that chemo takes its toll.  45% happens to be the magic number, so TFDB has put off the next Herceptin treatment until the next echo to see what happens.  She thinks that this is the result of tripling up the Herceptin to try to give Stacey a more human schedule, so it may be that doubling it is the best way to go about it.  (By the by, when I saw her this morning, not only did the hair look great, she did as well.  She certainly did not look like a person with reduced heart function.  She did not join in the Ancient and Hallowed Hair Celebration Dance with quite as much aplomb as I might have expected, but that might have been because people were already staring at us.  Oh, all right, they were staring at me.

October 22, 2006: A Little Light Reading…

Posted in Uncategorized by ohthatdeb on October 22, 2006

Actually, I’m considering assigning this as required reading for all Stacey Report telepaths (you know who you are: when test results impend, you pray or cross your fingers or buy flowers or do whatever it is you do to participate in building this bulwark).

Stephen Jay Gould. Sigh. If you are involved in any branch of the sciences, you have probably read one or another of his many (many many) essays on evolutionary biology or other topics. If you studied writing or composition, you have probably also read one or another of the same essays because the man was a blessed genius of a writer.

He was also, in 1982, diagnosed with a rare, nasty, and terminal form of stomach cancer. Median lifespan after diagnosis: eight months. When it looked like he would beat that time after an experimental course of treatment, he wrote a column for Discovery magazine called “The Median is not the Message.” He then proceeded to live another twenty years, so there.

I cannot ever mention Steven Jay Gould without also telling this story: I was first introduced to Mr. Gould’s essays in a composition course, and brought it to show to my father because I thought he would enjoy the writing.

“Hey, have you ever heard of this guy, Steven Jay Gould?”

“Steven Jay Gould… the baritone?”

Yes, apparently, Steven Jay Gould the baritone: he and my father (and my mother, and my stepmother (but not my stepfather)) were in the Handel and Hayden Society together years ago. Context, huh? Amazing how the frame changes the picture.

(That part about my stepfather is really really funny to just a very few people… sorry about that. For the rest of you I will explain that my stepfather has many talents, but let’s just say you might want to skip his turn on karaoke night.)

So anyway, in the tradition of ripping off other people’s stuff (in this case CancerGuide, a lovely site good enough to provide this essay to all and sundry) and of not making you click on stuff unless you want to (because I know you probably won’t) I present here for your reading pleasure the full text of The Median Isn’t the Message, which should be subtitled “Why Stacey doesn’t ask them for numbers anymore because she’s already heard all the numbers they have and she already knows that they stink and they don’t have anything to do with her anyway.”

The Median Isn’t the Message

Prefatory Note by Steve Dunn

Stephen Jay Gould was an influential evolutionary biologist who taught at Harvard University. He was the author of at least ten popular books on evolution, and science, including, among others, The Flamingo’s Smile, The Mismeasure of Man, Wonderful Life, and Full House.

As far as I’m concerned, Gould’s The Median Isn’t the Message is the wisest, most humane thing ever written about cancer and statistics. It is the antidote both to those who say that, “the statistics don’t matter,” and to those who have the unfortunate habit of pronouncing death sentences on patients who face a difficult prognosis. Anyone who researches the medical literature will confront the statistics for their disease. Anyone who reads this will be armed with reason and with hope. The Median Isn’t the Message is reproduced here by permission of the author.

The Median Isn’t the Message

by Stephen Jay Gould

My life has recently intersected, in a most personal way, two of Mark Twain’s famous quips. One I shall defer to the end of this essay. The other (sometimes attributed to Disraeli), identifies three species of mendacity, each worse than the one before – lies, damned lies, and statistics.

Consider the standard example of stretching the truth with numbers – a case quite relevant to my story. Statistics recognizes different measures of an “average,” or central tendency. The mean is our usual concept of an overall average – add up the items and divide them by the number of sharers (100 candy bars collected for five kids next Halloween will yield 20 for each in a just world). The median, a different measure of central tendency, is the half-way point. If I line up five kids by height, the median child is shorter than two and taller than the other two (who might have trouble getting their mean share of the candy). A politician in power might say with pride, “The mean income of our citizens is $15,000 per year.” The leader of the opposition might retort, “But half our citizens make less than $10,000 per year.” Both are right, but neither cites a statistic with impassive objectivity. The first invokes a mean, the second a median. (Means are higher than medians in such cases because one millionaire may outweigh hundreds of poor people in setting a mean; but he can balance only one mendicant in calculating a median).

The larger issue that creates a common distrust or contempt for statistics is more troubling. Many people make an unfortunate and invalid separation between heart and mind, or feeling and intellect. In some contemporary traditions, abetted by attitudes stereotypically centered on Southern California, feelings are exalted as more “real” and the only proper basis for action – if it feels good, do it – while intellect gets short shrift as a hang-up of outmoded elitism. Statistics, in this absurd dichotomy, often become the symbol of the enemy. As Hilaire Belloc wrote, “Statistics are the triumph of the quantitative method, and the quantitative method is the victory of sterility and death.”

This is a personal story of statistics, properly interpreted, as profoundly nurturant and life-giving. It declares holy war on the downgrading of intellect by telling a small story about the utility of dry, academic knowledge about science. Heart and head are focal points of one body, one personality.

In July 1982, I learned that I was suffering from abdominal mesothelioma, a rare and serious cancer usually associated with exposure to asbestos. When I revived after surgery, I asked my first question of my doctor and chemotherapist: “What is the best technical literature about mesothelioma?” She replied, with a touch of diplomacy (the only departure she has ever made from direct frankness), that the medical literature contained nothing really worth reading.

Of course, trying to keep an intellectual away from literature works about as well as recommending chastity to Homo sapiens, the sexiest primate of all. As soon as I could walk, I made a beeline for Harvard’s Countway medical library and punched mesothelioma into the computer’s bibliographic search program. An hour later, surrounded by the latest literature on abdominal mesothelioma, I realized with a gulp why my doctor had offered that humane advice. The literature couldn’t have been more brutally clear: mesothelioma is incurable, with a median mortality of only eight months after discovery. I sat stunned for about fifteen minutes, then smiled and said to myself: so that’s why they didn’t give me anything to read. Then my mind started to work again, thank goodness.

If a little learning could ever be a dangerous thing, I had encountered a classic example. Attitude clearly matters in fighting cancer. We don’t know why (from my old-style materialistic perspective, I suspect that mental states feed back upon the immune system). But match people with the same cancer for age, class, health, socioeconomic status, and, in general, those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say, tend to live longer. A few months later I asked Sir Peter Medawar, my personal scientific guru and a Nobelist in immunology, what the best prescription for success against cancer might be. “A sanguine personality,” he replied. Fortunately (since one can’t reconstruct oneself at short notice and for a definite purpose), I am, if anything, even-tempered and confident in just this manner.

Hence the dilemma for humane doctors: since attitude matters so critically, should such a sombre conclusion be advertised, especially since few people have sufficient understanding of statistics to evaluate what the statements really mean? From years of experience with the small-scale evolution of Bahamian land snails treated quantitatively, I have developed this technical knowledge – and I am convinced that it played a major role in saving my life. Knowledge is indeed power, in Bacon’s proverb.

The problem may be briefly stated: What does “median mortality of eight months” signify in our vernacular? I suspect that most people, without training in statistics, would read such a statement as “I will probably be dead in eight months” – the very conclusion that must be avoided, since it isn’t so, and since attitude matters so much.

I was not, of course, overjoyed, but I didn’t read the statement in this vernacular way either. My technical training enjoined a different perspective on “eight months median mortality.” The point is a subtle one, but profound – for it embodies the distinctive way of thinking in my own field of evolutionary biology and natural history.

We still carry the historical baggage of a Platonic heritage that seeks sharp essences and definite boundaries. (Thus we hope to find an unambiguous “beginning of life” or “definition of death,” although nature often comes to us as irreducible continua.) This Platonic heritage, with its emphasis in clear distinctions and separated immutable entities, leads us to view statistical measures of central tendency wrongly, indeed opposite to the appropriate interpretation in our actual world of variation, shadings, and continua. In short, we view means and medians as the hard “realities,” and the variation that permits their calculation as a set of transient and imperfect measurements of this hidden essence. If the median is the reality and variation around the median just a device for its calculation, the “I will probably be dead in eight months” may pass as a reasonable interpretation.

But all evolutionary biologists know that variation itself is nature’s only irreducible essence. Variation is the hard reality, not a set of imperfect measures for a central tendency. Means and medians are the abstractions. Therefore, I looked at the mesothelioma statistics quite differently – and not only because I am an optimist who tends to see the doughnut instead of the hole, but primarily because I know that variation itself is the reality. I had to place myself amidst the variation.

When I learned about the eight-month median, my first intellectual reaction was: fine, half the people will live longer; now what are my chances of being in that half. I read for a furious and nervous hour and concluded, with relief: damned good. I possessed every one of the characteristics conferring a probability of longer life: I was young; my disease had been recognized in a relatively early stage; I would receive the nation’s best medical treatment; I had the world to live for; I knew how to read the data properly and not despair.

Another technical point then added even more solace. I immediately recognized that the distribution of variation about the eight-month median would almost surely be what statisticians call “right skewed.” (In a symmetrical distribution, the profile of variation to the left of the central tendency is a mirror image of variation to the right. In skewed distributions, variation to one side of the central tendency is more stretched out – left skewed if extended to the left, right skewed if stretched out to the right.) The distribution of variation had to be right skewed, I reasoned. After all, the left of the distribution contains an irrevocable lower boundary of zero (since mesothelioma can only be identified at death or before). Thus, there isn’t much room for the distribution’s lower (or left) half – it must be scrunched up between zero and eight months. But the upper (or right) half can extend out for years and years, even if nobody ultimately survives. The distribution must be right skewed, and I needed to know how long the extended tail ran – for I had already concluded that my favorable profile made me a good candidate for that part of the curve.

The distribution was indeed, strongly right skewed, with a long tail (however small) that extended for several years above the eight month median. I saw no reason why I shouldn’t be in that small tail, and I breathed a very long sigh of relief. My technical knowledge had helped. I had read the graph correctly. I had asked the right question and found the answers. I had obtained, in all probability, the most precious of all possible gifts in the circumstances – substantial time. I didn’t have to stop and immediately follow Isaiah’s injunction to Hezekiah – set thine house in order for thou shalt die, and not live. I would have time to think, to plan, and to fight.

One final point about statistical distributions. They apply only to a prescribed set of circumstances – in this case to survival with mesothelioma under conventional modes of treatment. If circumstances change, the distribution may alter. I was placed on an experimental protocol of treatment and, if fortune holds, will be in the first cohort of a new distribution with high median and a right tail extending to death by natural causes at advanced old age.

It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity. Of course I agree with the preacher of Ecclesiastes that there is a time to love and a time to die – and when my skein runs out I hope to face the end calmly and in my own way. For most situations, however, I prefer the more martial view that death is the ultimate enemy – and I find nothing reproachable in those who rage mightily against the dying of the light.

The swords of battle are numerous, and none more effective than humor. My death was announced at a meeting of my colleagues in Scotland, and I almost experienced the delicious pleasure of reading my obituary penned by one of my best friends (the so-and-so got suspicious and checked; he too is a statistician, and didn’t expect to find me so far out on the right tail). Still, the incident provided my first good laugh after the diagnosis. Just think, I almost got to repeat Mark Twain’s most famous line of all: the reports of my death are greatly exaggerated.

Postscript by Steve Dunn

Many people have written me to ask what became of Stephen Jay Gould. Sadly, Dr. Gould died in May of 2002 at the age of 60. Dr. Gould lived for 20 very productive years after his diagnosis, thus exceeding his 8 month median survival by a factor of thirty! Although he did die of cancer, it apparently wasn’t mesothelioma, but a second and unrelated cancer.In March 2002, Dr. Gould published his 1342 page “Magnum Opus”, The Structure of Evolutionary Theory. It is fitting that Gould, one of the world’s most prolific scientists and writers, was able to complete the definitive statement of his scientific work and philosophy just in time. That text is far too long and dense for almost any layman – but the works of Stephen Jay Gould will live on. Especially I hope, The Median Isn’t The Message .

October 19, 2006: News Flash! Stacey Rocks!

Posted in Uncategorized by ohthatdeb on October 20, 2006

OK, kids, we have the report back from the tests and the news yet again is goodie goodie good good GOOD! The official result of the PET/CT scan is “complete resolution of bone and liver mets.” That’s medical talk for “Stacey Rocks!”

There was one glitch, which TFDB seems to think is an anomaly: there were some positive results at the breast site, so Stacey is going in for an appointment on Tuesday to have that checked out. TFDB does not seem too worried, and really the liver and bone are the bigger deal.

So, more dances for joy! Oh, frabjuous day!

October 13, 2006: We’re on a Carousel, a Crazy Carousel…

Posted in Uncategorized by ohthatdeb on October 13, 2006

Jacques Brel may be alive and well and living in Paris, but in Massachusetts here we go around and up again around and down again around… we have been quite confused. Stacey went in to see the radiation oncologist… and I am sorry to say that this gal does not get an F for fabulous. Gotta be honest here on the Stacet Report. First of all, she had a weak handshake. Now, that’s points off right there, I don’t care who you are or what you have to say. Then there was the bedside, or deskside, manner when she matter-of-factly informed Stacey that “it was decided” that Stacey wouldn’t be having radiation.

Now, as we here on the report know, Stacey is all about the cancer-cell massacre. Kill ’em all dead, then kill ’em again just to be sure! Stacey wasn’t sure whether this gal thought that she would be happy enough to be skipping radiation not to ask questions, or that Stacey would be satisfied with “it was decided” as an explanation (snort snort) but she seemed sort of flummoxed when Stacey wanted an explanation of why she wouldn’t be getting the radiation treatment. As far as she knew, the point of the radiation was to kill off any free-floating cancer baddies so that they couldn’t start congregating, right? And this sounded like a good idea, right? Right.

OK, in her defense, in a later appointment TFDJ explained that Radiation Oncologists are really mathematicians, not so much people people. It’s all statistics and percentages: that’s her job and we’re glad she’s good at it. But that means that when Stacey asked why she wasn’t getting radiation treatment, the answer “because your cancer has already metastatized” seemed like a really good one. But of course, Stacey went around and around with her asking why metastatized cancer would be treated differently, Stacey getting more and more upset as she got answers like “Because your breast isn’t your biggest problem.”  Oh, that’s comforting!  The best moment came when the doctor said “Well, if we radiated the breast we might as well radiate the hip and liver, too!” to which Stacey replied, of course, “OK.”  The doctor gave a little laugh at that, but as we know, Stacey was quite serious: I want you to kill all my cancer, and you are not explaining why you won’t do that; you’re acting like you think I’m a goner and that’s an attitude I will not accept.

Realizing that she wasn’t going to get anything more, Stacey said ” Well, thank you very much for your time.”  The doctor, sensing that Stacey wasn’t happy, said that she would have TFDB call her.  This was very astute.

TFDB did call, and because she left a message she wasn’t really able to answer the question much more clearly then, but did in a follow-up appointment.  Basically, radiation therapy is not a walk in the park, and there is only so much of it the body can take.  Stacey’s medical staff got together and decided that because she responded so well to the chemotherapy, there was a reasonable chance that the chemo had killed all the cancer.  If it did, and they went ahead with the radiation, she’d be going through that for nothing.  If it did, and they went ahead with the radiation, and then (because this is a sneaky kind of cancer) it shows up somewhere else later on, they wouldn’t be able to give her more radiation because she would already have had it.  If it didn’t, the chances are good that the biggest problem would be the liver, not the breast, so they want to save the big guns for that and see what happens.

See?  Now would that have been so hard?

Anyway, to get as much information as possible right now, Stacey is having a PET/CT scan today.  She also reported some shortness of breath, which both she and TFDB attribute to the medication she is taking, but the scans will also be looking at her lungs just to be on the safe side.  We have no idea when or whether any useful information will be reported from these tests, but we’ll keep you posted.

In the meantime, TFDB changed Stacey’s Zometa to every six weeks to better fit with the three-week Herceptin schedule.  Also there is some lovely downy blonde fuzz growing in — it isn’t long enough to be called a hairstyle yet, so Stacey is still sporting her lovely Can’t Fail scarves designed by Mary Ann Weiss at CJ Hats, where you should go for all your chemo cap needs! (That’s not a hint for a Stacey gift, just a shameless plug because we like Mary Ann and the Can’t Fail scarf is the BEST!)

More news as soon as we have some, and just a reminder: you will hear it here first, we promise! If it isn’t on the blog, you can safely assume that Stacey hasn’t heard anything yet.