The news, it’s good? (Kenna hurrah!)

Kenna hurrah (or “keynahora” or “khurahheyna” or “kukkaburra” or some other characters not available on my keyboard…) means “without the evil eye”, roughly equivalent to “knock wood”. Which is more common but, it occurs to me now, makes waaaaay less sense.

Also I’m supposed to spit three times between my index and second finger to ward off bad luck, which is notoriously averse to spitty fingers.

(Which is my new band name.)

ANYway… my sister Stacey, always looking for ways to make my life easier — as opposed to my childhood which she sought to make AS DIFFICULT AS POSSIBLE — has written yet another post for your edification and enjoyment. I say enjoyment because not only is Stacey still a great writer, we get a bonus added plus because the news is… Shhh! Good. Probably. Read on!

Stacey’s Report

What is this thing they call Good News?

Real, live, actual Good News has been pretty hard to come by lately. 
Sure, there have been days when nothing bad has happened, but the absence
of bad news is not the same as the presence of good news. And there
have been days when, miraculously, everybody enjoys what I make for
dinner and no one argues and everyone says "I love you" before going
to bed. Those are good days, but they're a part of regular life, one
hopes, and don't really qualify as Good News. Today, I bring you Good News.

Well, let me qualify that a bit. I bring you News which is probably good,
and should prove to be good, but which is still a bit theoretical in nature
and which requires that you take a leap of faith to appreciate now. In a
few weeks we should know if this "Good News" turns out to be GOOD NEWS!
I wouldn't blame you a bit if you wanted to hold out for that.

Here, now, some notes up front:
1. SGPT and SGOT are enzymes that are released by damaged livers (and
hearts, too, but we're not worrying about those right now). Measuring
the levels of these enzymes can indicate the health of a liver.
2. For SGPT the normal range is 7-30, uh, things. For SGOT it's 9-32.
3. All of my breast cancer is now concentrated in my liver. (Fun fact:
it's still breast cancer, even though it's in the liver.)

And now, for you fans of data analysis, I present the numbers:

SGPT	SGOT
02/05/09:	70	61
03/17/09:	64	56
04/28/09:	76	71
06/09/09:	96	97
07/21/09:	125	125
10/16/09:	201	175
10/23/09:	189	173
10/30/09:	194	158
11/06/09:	196	188
11/13/09:	245	223
11/17/09:	248	248
11/20/09:	238	209
11/27/09:	230	175
12/04/09:	234	171
12/11/09:	257	228
12/18/09:	174	144
12/26/09:       135	96
01/02/10:	113	94
01/08/10:	118	89
01/15/10:	83	66
01/22/10:	71	57

See those numbers down there at the bottom? See how they're
substantially lower than the ones in the middle of the list? Yeah, that's good.

It might even be Good. Or GOOD! Or, dare I hope, GREAT! Well,
for now I won't get too carried away as that would be embarassing.
I have a PET scan scheduled for next month (fun fact: tissue shows
changes slower than what can be detected in a blood test, so you wait
a bit to test so that it can catch up), which I hope will show more Good News.

The moles are on the run. Run, damn moles, run.

Guess what else sucks? Diabetes!

OK, before we start, I have to tell you this. WordPress gives us blogstessarios a big ol’ pile of stats just for being here, which means that I can see how many hits we get per day, per post, what links people clicked to get here, what searches brought people here, etc. No I can NOT see exactly who has been here, not that I would be so interested in that information because mostly you are members of our actual family.

But I can see this: in the past few days, some number of page views were triggered by a search on “Stacey’s boobs”. Now, I cannot promise you that there is not some other Stacey out there whose boobs are gettin’ lotsa press.  But it is interesting to me that the search was for StacEy, not Stacy as is apparently more common though certainly less classy.

I dunno — I choose to believe that someone is just fascinated with my sister’s boobs. Well, they are pretty impressive — and given all the trouble at least one of them has caused, it seems only right that they serve us well in some capacity, don’t you think?

OK, on with the show.

Remember the last post? Where I had to warn you that it kind of sucked except that my sister is a really good writer? Guess what?! This next one kind of sucks too, and my sister is still a good writer!

It doesn’t suck quite as much as the last one, but yeah, not so great. Here we go.

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How I lost 20 pounds WITHOUT EVEN TRYING!

As many of you probably know, I am a full-figured gal. Have been all my life, so it’s no surprise that I’ve been through my share of diets. I’m not big on suffering, though (oh yes, diets equate suffering, duh), so nothing has really stuck. I figured that if I had been meant to be thin then the whole thing would have been much easier, meanwhile let’s find some stretchy jeans.

Still, who doesn’t want to be a bit thinner, you know? So imagine my delight when all of a sudden I started losing weight WITHOUT dieting and WITHOUT exercise. Heaven! For about 10 weeks (except for the week after Halloween when there might have been an excess of post-holiday sale candy about the place) I would lose 1, 2, even 3 POUNDS EVERY WEEK! The day after Thanksgiving? 3 pounds! C’mon! That’s so awesome!

Being the kind and generous person that I am…what? shut up, Deb!…I have decided to share the recipe to my success. Are you ready? Ok, here we go:

1. Get diabetes

2. Wait

That’s it! That’s all you have to do. Oh, man, if I’d only known earlier I’d be a skinny minnie by now. All that time wasted on dieting and exercise and all I had to do was to get diabetes and not deal with it. I weep over all the time lost, I really do.

Oh, ok, maybe it’s not the best plan. It’s entirely possible (and completely true) that if your blood glucose levels get too high your body starts burning fat for energy and just passing the glucose out of your body (which can lead to yeasty infections in the tender nether regions, ow). The by-product of the breakdown of fats is ketones and a high enough concentration of those leads to ketoacidosis. Take that too far and the result can be death.

Well, no thanks, the universe is ALREADY trying to kill me, thank you very much, so off to The Fabulous Dr. Johnson went I. From there I was referred to the Diabetes Management Program at Newton-Wellesley Hospital and now it’s a daily routine of testing my blood and injecting myself with insulin. And the meal plan. Holy God, the meal plan. It’s very nearly as bad as chemo, I SWEAR TO GOD. Don’t get me started on the damn meal plan.

Anyway, here’s a bit more background: It turns out that my glucose levels have been high since at least February. Like, scary high. If you normal people wake up in the morning and had your glucose level tested it would probably be around 140 or lower. When they were testing mine at treatment it was regularly in the low 300’s. Yikes. In the beginning people would either not notice it, or casually comment on it and postulate that it might have something to do with the chemo or maybe I just ate a pound of sugar or something (nope, I hadn’t even eaten breakfast yet when the blood tests were taken). So, for a while, no one really thought much of it. But then, when my chemo med was changed from Xeloda to Navelbine all of a sudden there were other symptoms. The weight loss, for one thing, and excessive sweatiness for another. If you know me then you also know that I’m always sensitive to the heat, so you’ll know what it means when I saw that I started sweating a lot. A LOT. Like, I’m walking around in 40 degree weather with a short sleeved shirt on and I’m still sweating. There are other signs of diabetes (excessive thirst, tiredness, etc.), but these three symptoms combined started raising those red flags. Plus, I there is a family history and I had gestational diabetes, so none of this is any real big surprise.

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This is Deb now, and I’d like to interject here that the family history thing is absolutely true. Our father had adult-onset diabetes, and our mother does things like carry hard-boiled eggs and sharp cheddar in her purse in case of sugar crash. I myself have had some impressive hypoglycemic experiences, like the time I forgot to eat all day because I was so involved in making a Cheerleader from Hell costume for Halloween. When I finally stood up, the blackness crawled in from the edges and I promptly fell back down. And sort of twitched. A little.

Now, a normal person might have thought, “Hmm… I have just passed out. Perhaps this is a cause for concern.” But being a member of our family, I just cursed myself for a fool and crawled to the kitchen. After a few tries, I managed to pull a can of Boost down from the cupboard (I used to keep this on hand because I had trouble keeping weight on. Isn’t that adorable? At the time I weighed something like 95 pounds, skinny even for me. I have since been relieved of half of my thyroid and have no trouble maintaining a healthy 125. OK, 130. OK, shut up.)

ANYway… the moral of the story is that Stacey might have developed diabetes just about now even without cancer. Isn’t that comforting? Yeah, ok, not really. But still.

Back to Stacey:

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My chemo nurse urged me to talk to my primary and even did the a1c test, which is an indicator of how high the glucose levels have been over the past 3 months. A normal result is 7 or below, two years ago mine had been at 6, and two years before that it was 5. Now? 11.5. If you give that number to someone in the know they fall right over from the shock. TFDJ didn’t have to do much to make the diagnosis since all the tests were already done. She decided to avoid the oral meds that are often prescribed because they can put a load on the liver and that’s the last thing my liver needs, so we went straight to insulin.

But here’s the thing! It’s another on my not-really-that-long list of good things about cancer (if you then get diabetes division): Since I had a tram flap reconstruction when I had my mastectomy (which meant that I had an incision from hip to hip) I don’t have sensation in the area of my stomach where they suggest that you inject, so it doesn’t hurt a bit! Well, it doesn’t as long as I confine my needle sticking proclivities to that particular strip of stomach. If I wander outside of that area then it hurts like crazy, but mostly it’s no big deal.

Several people have asked me how I feel about the diagnosis and my usual answer is that it’s not nearly as bad as being diagnosed with cancer, because, really, it couldn’t get any worse, could it? What’s the alternative, I ask, sitting in the corner weeping? That doesn’t sound like any fun. So I continue on.

The upside is that I haven’t been worrying about whether or not the Navelbine

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Heh. Heh heh. She said Naval Bean!

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has been working because I’m too wrapped up in counting those damn carbs. The little bastards are everywhere! I’m currently engaged in my yearly hunt for chocolate ornaments for the Christmas tree (know of any? let me know!) but I know that if I find them I can’t have any. That sucks. But it’s not dying, so…whatever

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And there we have it. You know, you can cast your eyes to heaven and pray “Dear Lord… knock it off!” But if you think about it, anyone’s life, everyone’s life, is just a series of events awaiting context. Chaos awaiting order, which is the history of humanity — and boy howdy do we hate that randomness, pattern-seeking creatures that we are, so inevitably we either find a pattern or we make one.

We’re definitely a “make” kind of family, and there are any number of patterns Stacey could make out of this little beaut. I suppose she could place the back of her limp hand against her forehead, fall gracefully onto a chaise lounge, and flutter “O woe, O tremble, O poor poor pitiful me!” But she has the sense to know that if she did that, not only would she look utterly ridiculous, but the next time she looked around, she would still be draped pitifully on the chaise and in precisely the same situation she was in before. Feh.

More in character is her standard reaction “Oh fer chrissake, what now?” Which has the benefit of setting all of this in the context of “complete waste of f***ing time that I’d rather spend finding chocolate Christmas tree ornaments or raising my children or something.” A much more useful way to go than the whole chaise lounge thing, don’t you think?

Goodish Badish Noneish News

Ok… uh… I’m really not sure whether this is good or bad news — it sounds like the good news is not as good as we thought, but the bad news doesn’t exist either, and we shouldn’t have been expecting any news at this point, so the fact that we don’t really have bad or good news is not news.

The word “news” has lost all meaning.

So here is Stacey’s performance art piece entitled…

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Of Liver Values and Human Beings

I need to retract just about all of the last post. Well, the info Deb gave you on SGOT and SGPT is right, but the levels didn’t really go down. Also, the drop in the tumor marker never really happened. Sigh.

First, the tumor markers. It seems that TFDB misread one of the reports, or took one value from column A and one value from column B, or something. This is where the human being thing comes in. I met with her last week and it turns out that she doesn’t even remember having the conversation. One value did drop from 30 to 29, but nothing dropped from 30 to 20. In fact, I learned that it takes from 8 to 12 treatments with Navelbine before any results are expected. That might have been nice to know going in, I guess.

Maybe I should ask more questions, but we’re treading very close to questions I don’t actually want answered, you know? Questions with answers that I know I’m not going to like, so I don’t ask them. Sometimes that means that other questions don’t get asked, like, “When will we start to see results?” Oh, well. Can’t really get mad at her for the misinformation, though, because I’m sure it was just an honest mistake. I’ll probably ask to see the numbers next time, though.

I was a little bummed when I realized that the drop never happened and no real change has happened yet. I pulled out of the MGH parking garage and started crying a little bit, but then realized that it’s hard to drive in Boston with your eyes all teary, so I cut that shit out. No time to be weepy when people want to run you off the road. Later, I was over it, so no crying.

The deal with the LFTs (what we shall evermore use to refer to Liver Function Tests) is that they’ll keep going up until the Navelbine starts killing off the cancer cells in the liver. If they go up too high, however, then there’s too much toxicity in the system and the Navelbine is halted. It’s a Catch-22, like for reals, because giving the Navelbine makes the levels go up, too, at least until it makes them go down. They held the Navelbine the week before last because of this. I went to see her last Tuesday and she decided that as long as they’re under 300 and everything else looks fine (bilirubin is important in this decision making process) then they’ll go ahead and treat. So it’s like finding out whether or not you’ve won the lottery every Friday. This past Friday I did win (the LFTs actually did go down, more of a short term fluctuation) and did get the Navelbine. Interestingly I haven’t had any nausea with it lately. Fine by me.

So, the lesson here is that people make mistakes and chemo takes longer to kick in than you’d like. I’m not happy with either situation, but what can you do, you know?

In more important news: I’m very unhappy with the Thai options in the MetroWest area. I’d like to find a place with a strong pad thai, but also a good crispy roll and Silver Noodles. This has become critically important, for some reason. Any suggestions?

Oh, and Happy Thanksgiving!

Suck on THAT, cancer!

So how much do YOU know about liver function values?

Here at the Stacey Report, we pride ourselves in knowing every single thing about liver function values. Also we fly. And poop pixie dust.

So we had to look up all this stuff and now distill it unto you:

Liver function values are the values that one obtains when one performs liver function tests on Stacey’s liver (well, and yours too, but are you having liver function tests today? No you are not. So sit down and listen.) In Liver Function Value Land, up is BAD, down is GOOD.

<all kinds of potentially boring science-y stuff>

There are two values we care about; they’re both enzymes made in the liver, also called transaminases (as in, amino acids):

• SGPT  (aka ALT, Alanine aminotransferace. What SGPT astands for, and why they don’t just call this ALT, I do not know.) This one appears in other places in the body too.
• SGOT (aka AST Aspartate aminotransferace. see above, re: wtf?) This enzyme is found in the liver only.

The liver uses this stuff to metabolize; when liver cells are damaged or dying, the enzymes leak into the bloodstream, so more enzymes in bloodstream = higher liver function value = BAD. More enzymes being used efficiently in the liver = lower liver function value = GOOD. You with me?

The normal range of ALT is between 5 and 60 IU/L (international units per liter).

The normal range of AST is between 5 & 43 IU/L.

The numbers aren’t proof of disease, they’re just indicators that indicate indications of disease, but they’ve proven to be reliably indicative.

Learn More!

• Liver function stuff: http://www.labtestsonline.org/understanding/analytes/ca15_3/glance.html (look for “Measuring Liver Enzymes)
• Tumor marker stuff: http://www.labtestsonline.org/understanding/analytes/ca15_3/glance.html.

</all kinds of potentially boring science-y stuff>

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OK, so here’s the report from Stacey by way of TFDB:

Before starting on Navelbine…

(snork snork, Naval Bean! snork)

You are a fourth grader. ANYway… before starting on Navelbine my level was 30. Last week it was down to 20.

(remember, up is BAD, down is GOOD)

That was after only 3 rounds of the Navelbine. I confirmed with TFDB that it was not just good, it was “jumping-up-and-down” good.

Suck on THAT, cancer!

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Suck on that, cancer. Suck on that indeed.

Liver sucks.

Here is the latest report from Stacey herself.

(Warning: it kind of sucks.)

(Except for the part where my sister is a really good writer. That doesn’t suck)

(The rest? A veritable surfeit of suckiness.)

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Time to whack another mole.

I hate liver. I have vivid memories of being served liver for dinner as a kid, and they’re not good ones. The only way to get it down was to drink lots of milk: bite, sip, chew, chew, chew, swallow, repeat. Lots of whining, complaining, and faces so horrifying it might get stuck that way if I’m not careful. All so very traumatic. Of course, a few years ago my mother confirmed that she made liver, like, once, maybe twice. Apparently, childhood memories are not to be trusted.

Liver still sucks, though. A few weeks ago I decided to suck it up and try Auntie’s chopped liver. She makes this by hand for holiday dinners and it is beloved by the menfolk. Even the cranky teenager (who will be 17 in a few weeks and how the hell did THAT happen?) loves Auntie’s chopped liver. So, after knowing this woman for 23 years, I finally decided to try it. Well, my apologies, Auntie, but it was disgusting. The same gritty, chalky, pukealicious mouthfeel that I rememberd from my youth. Yuck! I really hate liver.

So, it comes as no surprise to me that it is my own liver that has decided to betray me now. I’ve been betrayed before by my body: my left breast is now so much medical waste, but one can’t do to a liver what was done to my breast, so it’s back to the Carnival for another round of Whack-a-Mole. Yipee?

The details: about two weeks ago I had a PET/CT scan. TFDB does these about once a year, just to see what’s going on. Well, what’s going on right now is that there is progression of the disease in the liver. Where there were once two lesions there are now five (the two old ones, plus three shiny new ones). This means that my time on Xeloda has come to an end. It was a pretty good run; the average treatment time with Xeloda is 8-9 months, I was on it for about 16 months. It did well by me, so I can’t really complain, except that I totally complain about it all the time. Such is life. Anyway, I WILL NOT miss the effect it had on my feet, my hands, my stomach, my lower intestines, etc. I also will not miss the side effects that have been cropping up only of late (the longer you’re on it, the more it messes you up?) such as the increased sweating. Xeloda: you’ve been good to me, but I’m happy to see you go. The newest player is Navelbine (generic: Vinorelbine). It’s an intravenous drug that is given on days 1, 8, and 15 (rinse and repeat). TFDB assures me that my hair won’t fall out, but that is one of the possible side effects. The common side effects are nausea, vomiting and loss of appetite. A less common one, but one which they worry about most, is low blood counts, so they test before every treatment. As I write this, I am at MGH preparing for the first treatment. I arrived at 7:30 to be hooked up and have blood drawn (after the usual vitals taking, of course). It’s 8:45 now and the results are back, but it sounds like they’re having an issue with the date of the order and that’s slowing things down. Sigh. The plan for the rest of the day is to get out of here, go home, then work the rest of the day from the couch. I’m assuming that there will be nausea at the least, so that should be fun!

By the way, there was about a week between when I had the test and when I got the results and this was due solely to me being a giant chicken. I could have called for the results the day after, but I conveniently forgot to bring the number to work with me. In the days after I just kept finding reasons not to call. I had a feeling that the results would be just what they were, as did TFDB, as did anyone who knows that I was way past the expiration date on my Xeloda trip, so I put off the inevitable. Getting bad news isn’t fun, as I’m sure you know, and I knew that it would put a crimp in my otherwise positive attitude. Who wants that? But, you can’t deny the truth for too long, so I did finally call and now I’m here. I’m feeling good about the whole thing; can’t let those cancer cells get TOO complacent, after all. So, get your whackers ready and let’s get to some mole whacking. Everybody with me?

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Needless to say… yes. Yes we are.

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Wait, forget that — read this instead.

Oh, dudes, what a treat you have in store. I’m kind of jealous, actually, because I’ve already read it and you haven’t.

I’m just going to savor the moment.

OK, I have savored. So, I just wrote that thing about Stacey and the chickie? THEN I get an e-mail from that very same Stacey (no word from chickie), to wit:

I wrote a thing. Of course, then I noticed that you wrote a thing about the same thing, so you don’t have to use this thing. Except that it has more stuff. Stuff and things, things and stuff. Either way.

Thank you for understanding the gist of the story: my brain ain’t dead yet.

This is very excellent, partly because it is really well-written (ibid., intelligence) and partly because, true to form, I messed up a bunch of details.

So here it is!

=====================================================

Dear.

So, Tuesday was treatment day. It was a Herceptin & Zometa day as opposed to just a Herceptin day, so that means that I get blood tests. MGH would like to give you a blood test if you so much as look in a window, but I only need them to check liver and kidney function to make sure they’re fine before I get the Zometa, so I only need them every 6 weeks. To complicate matters (because that’s what I do), I have a port and the blood is drawn through that. Apparently only certain people can do this as it’s much harder to plunge a small needle into an area of cork-like substance just under my skin than it is to probe around in my arm trying to find the one and only vein Nature has deemed good for the job. But, whatever, I’m not complaining (except that I totally am); only special people can do a port draw. Fine. But here’s the issue: those people are kept in the infusion lab on the 8th floor, not in the office lab on the 9th floor. Fine. FINE. So, I’m supposed to show up on the 8th floor and have my blood drawn, then go upstairs to see the doctor, then go back downstairs to get treatment (but I’m already accessed because they don’t take the needle and tubing out after doing the draw; they just wrap it up neatly and shove it down my shirt. Uh, ok.). So, this Tuesday, being both a Herceptin & Zometa day, I show up on the 8th floor for the previously scheduled port draw. I have my vitals checked (they LOVE checking vitals), then go back out to the waiting room to wait for the special port drawing person. All as normal. Except that then this GIRL (Oh, yes, a pissy rant is on its way) comes out and tells me that I’m “in the wrong place, dear.” Ok, I added the “dear”, but she meant to say it.

Huh?

“Yes, you’re supposed to get your blood drawn upstairs.”

“But I never get it drawn upstairs.”

“Ok, hold on, let me check.”

>Wait
>(time passes)
>I really need to play Zork again.
>You’ve been eaten by a grue.

“You only get your blood drawn down here half the time. They can do it upstairs.”

“No, I only get my blood drawn half the time AT ALL. It’s done here EVERY TIME.”
(and here I could go on another rant about data and the analysis of said data and how I’m likely better at such a thing than this slip of a girl. I mean, I COULD.)

So she goes back again to check. Which means, of course, that someone else is telling her what to say.

“They say (at least she’s honest here) that you need to go upstairs.”

“And is there someone there who can do a port draw?”

Elaborate, ELABORATE shrug. It was a thing of beauty, really. I was completely impressed and went upstairs just based on the strength of the thing. It said: I’m young and beautiful and completely out of touch with what is going on here, but please be distracted by my cute little smile and go away. Dear.

I should have asked to speak to whomever she was speaking with, but only thought of that later. I was distracted by the shrug.

So, I went upstairs to check in for the doctor’s appointment (for which I was now late, of course, not that it mattered) and let the guy at the desk know that I was supposed to have had my blood drawn downstairs, but that they sent me away. He let the nurse know, who let the doctor know, and about 20 minutes later (there’s no escaping the inevitable waiting) both came to the door. TFDB (“The Fabulous Dr. Browne” for those new to the lingo) was in high dudgeon, which was fabulous. There was some wasted time as blame was assessed (I know who I’m blaming and it isn’t anyone in her office). Then they tried to tell me that they would draw the blood up there, but that it would have to be through a vein. HA!

“Oh, sure, no problem. You can try that, if you like, but I hope they’re good because it took 6 sticks last time.” (Not really; not for a draw. It took 6 sticks, from 3 people, to get a line in one time, but that’s not the same as a blood draw. I was just being dramatic, if you can imagine such a thing.)

“Huh, well, maybe there’s someone who can do a port draw.”

I certainly hope so.

During all this I was being ushered into the exam room by another nervous young thing who was trying to tell me How Things Work, while I was disabusing her of such notions. A few minutes later she was back to say that they had found someone and could I please come to the lab down the hall. Right-o.

The nurse they found to do the draw was very nice, and had, at some point in the distant past, done port draws before. But not recently, which means that she was rusty, which means that it took two sticks to get the stupid needle into the little cork-like thingy. It’s really so simple; I could do it myself. I don’t know what the problem is. Anyway, she finally got it done and back I went to see TFDB.

Half of the appointment was spent bitching about the whole series of events, about 40% was spent on how rotten teenagers are, and about 10% was spent on actual medical things. No weird lumps (I’m not completely sure how you can get a lump in a pile or former stomach now doing duty as a “breast”, but mine is not to reason why.), and she couldn’t feel my liver, which is always my worst fear. She commented on how great I was doing (Hey, good job on not dying yet!) and then I was out.

Well, then it was time for treatment. By this time I’m an hour late, but they don’t seem to mind, except that there was no one left on the Check In desk, so the Check Out lady had to cover. I’m sure that will be discussed for years to come.

Anyway, after a very short wait I was brought back and offered a warm blanket. Uh, it’s July and I’m…well padded. I’m already quite warm, thank you. I was told I’d have to let my nurse know that I refused the blanket. Whaaaa? Uh, if you’d like to report back to the nurse then report away. I’ll just be over here wondering why on earth it’s a capital offense to decline (nicely, of course) the offer of a warm blanket. Did I mention it’s the middle of JULY?

So, I get hooked up and I’m pumped full of drugs. Then I leave, get stuck in traffic on the Pike, foget to get something at Whole Foods and have to stop at another one, and finally get home about 7:30.

In the end, what really happened to me? Someone screwed up an appointment and I was inconvenienced? No, I didn’t really care about those things. What pissed me off the most was the attitude of the girl who told me I was in the wrong place, dear. Can’t we just start with the assumption that I’m an adult in full command of her faculties (I went through this part with Auntie Deb and forgot the term for a few seconds, proving exactly the opposite) and then, if I act the part, you can treat me like a child? Or was she treating me like a sick person? I think that’s more likely the issue. There are many, many, frail, sick people in that area. I walk past many rooms with beds occupied by deteriorating bodies, so I’m sure they’re used to that.

BUT I’M NOT ONE OF THEM! To look at me you’d never know I have terminal cancer. I don’t even usually use that term because it’s not who I am. I’m not terminating, there’s no termination going on here. That word has no business here. I’m still stomping around being loud and obnoxious, yelling and swearing, taking up the same amount of space (too much) as before. My cancer stomping feet are stomping, stomping, STOMPING this bastard disease and no one can tell.

We all carry around shit that defines us; secrets that no one can guess unless we tell. But if I’m in Suite 8A – Infusion, in the Yawkey building at MGH, then it’s a fair guess that I’ve got a certain kind of shit going on and there is no hiding from that. And so, I guess, when an appointment gets screwed up, instead of apologizing for wasting my time, some newly minted assistant something-or-other will tell me that I’m in the wrong place, dear.

And that sucks.

Stacey: Idiot Or Non-Idiot?

I’m thinking…… non-idiot.

But others would say different! Apparently!

Yesterday was a treatment day, and I think my sister knows by now how treatment days go. Every other week she has a blood test to see if she has, y’know, blood and everything. Stacey has, if you recall from past Eewy Medical posts, a port: a permanent IV line under her skin. Why does she have this odd thing? Because she has “uncooperative veins” and she’s forever getting pincushioned by inexperienced medical folk. Port = for-sure impalation.

This is important because at the hospital they only do port draws upstairs. So here are the true facts that Stacey knows: She has blood drawn every other week, she has a port draw, not a pincushion draw, and they only do port draws upstairs. They don’t do them downstairs.

So yesterday, Stacey goes upstairs for her bi-weekly port draw (which they only do upstairs.) The nurse at the desk (I believe Stacey used the word “chickie”) tells her:

“Oops! You’re supposed to be downstairs for this!”

“No, they don’t do port draws downstairs.”

(With the condescending tone reserved for dim little old ladies) “I’m sorry, I know it’s confusing! But today you’re having your blood drawn downstairs, ok?”

OK! So I’ll stop here to explain something. In our family, many virtues are highlighted, but the one that garners the most attention and praise is intelligence. Wordplay, insight, uptake, debate, quick wit — these are highly valued, and they are the ways we enjoy one another’s company. Part of showing respect for one another is the base assumption of intelligence and, by extension, competence. So if Stacey tells me she’s supposed to be upstairs because it is her blood-draw week, and she has a port, and they only do port draws upstairs, a respectful response would be “Huh! It doesn’t say that here — let me take a look and see what I can find out.” It would be a pretty big insult to say “I’m sorry, I know there’s no way you could have a good reason to think that, so I’m going to completely dismiss your opinion, ok?”

Yeah, so that’s pretty much what miss chickie said. Well, you can imagine Stacey’s response, all the stronger because when one of these appointments goes long, everything gets pushed back and she ends up waiting around all day.

“No. I have a port, and they only do port draws up here. I have an appointment up here for this blood draw.”

Chickie goes back into the office to talk to someone. “OK, you’re supposed to be here every other week, and the alternate weeks you get your blood drawn downstairs.”

(With growing irritation) “NO. I only get my blood drawn every OTHER week. I’m scheduled to be here every other week  because I have it drawn every other week, and I have that done here because I have a PORT and they ONLY DO port draws UP HERE!”

Chickie goes back to talk to mystery office person, comes back out: “You’ll have to go downstairs.”

Stacey grits her teeth and makes that Grandma Ridgely face. “Oh for Chrissake!  Do they have anyone downstairs who can do a port draw?”

Chickie shrugs sheepishly.

“Fine, I’ll go, but they are going to send me right back up here. I’ll be back.” Stacey stomps out.

As it turned out, by sheer luck there was someone downstairs who could do it (not very well) — on any other day, they would have sent her back up. Which would not have been too pleasant for Chickie since by then my sister was a seething mass of firey rage.

The moral of the story: don’t insult a Bancroft girl’s intelligence. It makes us cranky. You wouldn’t like us when we’re cranky.

And furthermore: Twitter

As it turns out, my sister is quite a prolific tweeter (or whatever you people call yourself). I’ll see if I can set up a direct feed, but for now you can stalk…uh… ” Follow” her here:

https://twitter.com/snarkravingmad

The Dangerous Myth of the Enlightened Cancer Patient.

“God grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference.”

Well, who can’t get behind THAT, amirite? But have you ever read the rest of the poem? To wit:

Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace…”

Okaaaaaay, hold it right there.

Now head on over to your local cancer fundraiser website. They all say things like “Living life to the fullest!” and have testimonials: “Cancer was the best thing that ever happened to me: I found out what was really important.” Lots of crying, lots of hugging, lots of beautiful awakenings.

This is good, don’t get me wrong. Anything that makes having cancer suck even a little bit less is good, I don’t care if you’re flogging bats. (OK, actually I do care, but I digress. As usual.)

But here’s the problem. What if you’re not interested, not even the tiniest little bit, in “accepting hardships as the pathway to peace”. What if you have no clue whatever in the world that might mean, given that there is no inherent causal connection AT ALL between hardship and peace. What if you already know what is important, thank you, and one of those things is hitting back, hitting hard, and hitting below the belt?

What if the very flippin’ LAST thing you want to do is put on a pink feather boa and cry?

What if you’re not grateful?

What if you’re just plain old pissed off?

Prevailing wisdom would have us believe that the best, if not the only acceptable, response to a diagnosis of cancer is an emotional journey that leads to acceptance… or something. Again, whatever floats your boat, but the problem is that if you do not respond in that way, people around you are likely to try to make you resond in that way, for your own good. And the problem with THAT is: if you’re having response B, and a whole lot of people express grave concern because really it would be BETTER to have response A… then they’re also saying that your actual organic emotions are the wrong ones to have.

Now let me tell you a story. Once upon a time, there was a girl who might or might not be the daughter of your humble narratress. And this girl inhereted the anxious temperament that ran in her family. This girl was constantly freaking out about one thing or another, dissolving in tears over math homework. The parents of this girl were forever saying brilliant things like “you don’t have to get so upset about this!”

And did that approach help this girl? O, no, it did not. What it did was upset her more, and the parents began to theorize that not only was she feeling inadequate to the task, she was now hearing that feeling upset about feeling inadequate would not help her; on the contrary, getting upset would make things more difficult for her.

Now, I’m not saying that freaking out is a fantastic approach to math homework, but likewise saying “stop feeling that!” is a pretty stupid approach to… well, to anything. The key to helping this girl (who has grown and matured by leaps and bound since then, whether thanks to her parents intervention we may never know) the key was to accept her emotion as fact. And one of the depressingly few things I’ve said that seemed to be helpful to her was this: “You are feeling anxious and upset about this, I know, and your feelings are your feelings. But when you’re hungry, let’s say — do you immediately start chewing on the book you happen to be reading at that moment? On the curtain next to your head? No — you do have to eat something, but you go to the kitchen and choose what you want to eat.”

So it is, I firmly believe, with everything in life: feeling is fact. You might decide to find ways to change the feeling, but that would also be a considered response, right? The initial feeling is fact. If you’re hungry, sure, you might choose a bowl of strawberry pudding with a big puff of whipped cream on top. Stacey does not happen to want strawberry pudding at this moment. If she has a hankering for Tekkamaki with extra wasabe and a side order of Whupass, then I for one will be first in line to take her over to Minado for all she can eat.

The Wac-a-Mole Approach

Extra! Extra! Eewy Medical Stuff!

Or possibly: Extra, EXTRA eewy medical stuff.

You be the judge.

After the Boob Job! Boob Job! there was a time of recovery and then Stacey started in with the scheduled scans and tests and pokes and prods and other pleasant and dignified experiences.

I here prepare the ground by asking: have you ever played Wac-A-Mole?

If you haven’t… well, you are clearly spending too much time doing laundry, first off. Second, here’s an online version that is NOT as much fun as the actual-factual version because when you play the real one these annoying little plastic critters keep popping up but you have a MALLET and you POUND away with great WHACKs — there’s even a little resistance to the beasties so you can feel you’ve done some real damage. Awesome.

So here’s an improbable sentence, which I am proud to attribute to our father:

Metastatic breast cancer is a lot like Wac-a-Mole.

(Here’s another improbable sentence, one I actually said to my toddler: “Honey, please don’t put peas in the stapler.” I just had to share that.)

So after the boob job, in the next series of pleasant and dignified tests, a couple of annoying little critters showed up. A few were in the necrotized fat (eeeeeewwwwww….) around the fake boob, and no one was particularly impressed — apparently necrotized fat is a tremendously confusing substance and even the most stalwart of PET scanners is occasionally thrown off.

But there were a few blips in Stacey’s liver, and I don’t have to tell you how much that sucks. The bone stuff seems fine — as you know there’s really no reliable way to scan for that, so they kind of go by whether she’s having any pain, which she isn’t. So that’s good. But liver blips call for some serious MALLET action.

So, more chemo! But this time it’s pill form and non-baldening.  Things seem to be going well, the only side effect being Hand and Foot Syndrome. No, not Foot and Mouth Disease, which is apparently available only to the cloven-hoofed among us. Hand and Foot Syndrome happens when chemo drugs leak out through the tiniest of capilaries, concentrations of which are found in the hands and feet.

The result is swelling and peeling skin and the feeling that you fell asleep on the beach for about ten hours with everything covered except your feet and now you have to go grocery shopping. That was at the height of the wonderfulness — Stacey has since figured out a routine of soaking and moisturizing and kvetching that seems to do the trick.

More will be revealed as it is revealed to the Stacey Report. But the upshot is that Stacey stubbornly refuses to cave to this bull.

WHACK!