Not Going To Jail Today

Just FYI…

The meds appeared.

Empire Blue Cross Blue Shield is safe.

For now.

Note to World: Bad Move!

Dear World,

I wouldn’t have thought that you’d need me to tell you this. I mean, it’s sort of along the “don’t play golf in a thunderstorm” lines, in the “Duh!” category.

Don’t piss my sister off.

It’s pretty simple, especially since this whole cancer thing happened: My sister gets to have whatever she wants. Period. I don’t care who you are or what you have to go through, just get it done.

And this isn’t even something she wants! Believe me, I’m sure that she’d rather make all of YOU take the stuff at this point, but she needs it and you aren’t giving it to her and now I’m just going to run and duck. And if you’re still breathing later you can tell me what it was like, but for right now I really don’t have a single bit of pity for you because you did not abide by the one simple rule stated above, ibid and to wit:

My sister gets to have whatever she wants.

(This is your own damn fault):

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Dear Empire BlueCross BlueShield, PrecisionRx Specialty “Solutions”, and FedEx,

Would it be easier for you all if I just died? Is that what you’re hoping for? Do you really hate sick people that much? These are really the only reasons I can come up with for the way in which you all have behaved in the past week and I would just like to say this: FUCK YOU.

All I need is a prescription filled. A legitimate prescription, written by a real doctor, for a very real and very serious reason. Why is this so hard? Supposedly I will be receiving it on Monday, but that is TEN DAYS AFTER THE PRESCRIPTION WAS WRITTEN. This is appalling service and all three of you should be ashamed of the parts you have played in this. Ashamed.

Let’s break down the many ways in which you have failed me. First, a few establishing facts: my doctor sent a new prescription to my local CVS last Wednesday at around 6 pm, before I had even arrived back home from the appointment CVS had called to let me know that my insurance company (Empire BCBS) required that the prescription be filled through PrecisionRx Specialty “Solutions” (quotes mine because THERE HAVE BEEN NO FUCKING SOLUTIONS YET), CVS let me know that they had spoken to PrecisionRx and had faxed them the prescription. Now for the process breakdowns:

1. Empire BCBS required authorization from the doctor before they would approve the script. But the doctor? wrote the prescription? which is kind of like authorization? Or it would be, to right-thinking people, of which there are precious few in this story. When I called Empire they were very nice and called the doctor’s office for me to get them the correct forms. I suppose that if you’re going to have an absurd process you might as well participate in it a bit.
2. Empire normally takes 7 to 10 days to approve these scripts. 7 TO 10 DAYS?! This is a prescription for a drug to treat metastatic cancer. Do you know what that even means? I don’t have that kind of time to screw around here! To their credit they put a rush on it which cut the processing time down to 24 hours, but still! I can do it in two seconds: a well-respected, credited doctor wrote a prescription for an established patient…APPROVED! See? Easy. No one is trying to get away with anything here. This drug can’t be used for illicit purposes. No one is getting high or making money off of it. There’s only some poor sap over here hoping that this drug will buy them a few more months of life, that’s all. Fuck me for even trying, I guess.
3. While this was going on, I was calling PrecisionRx every day and every day I would ask about the process and was there a way to hurry it along and every day I was told that they just needed the approval from Empire, and then that they needed coverage information from Empire, and that once they had these approvals they would schedule the delivery with me. WTF? Here I am, on the phone, ready to schedule the delivery. Why do you even need to schedule a delivery, anyway? JUST FUCKING SEND IT ALREADY! I called you every day and every day you had the opportunity to take the information you needed to process the payment (which is really what you were worried about, let’s be honest here). And every day I was asking you if I could give you that information now, today, let’s not wait. But you had to wait, because your process sucks.
4. Finally, yesterday, PrecisionRx had everything they needed and were ready to “schedule the shipment” (which is the stupidest term I’ve ever heard for what was essentially a bit of bureaucratic nonsense). So I gave them the credit card info, and confirmed the address (for, like, the millionth time), and spoke to their nurse (complete waste of time, PrecisionRx – I have a nurse, and a doctor. That’s where I got the script from, remember? Your nurse was very nice, but she has nothing for me and it was a waste of time for both of us.) So then they tell me that delivery would be on Monday. You’ve already screwed around for a week and now you’re going to just send it the slow way? No. I don’t think so. So I asked, very nicely, if they could ship it overnight and she checked with her manager and they approved it and I thought we were all set, if by “all set” I mean almost at the end of this very long and very frustrating process, which I guess I do because that’s really all I was going to salvage of the situation at that point. Fine.
5. When I get home that night I have a call from PrecisionRx asking me to call about my prescription. I was hoping that it was a call to schedule the delivery, whoops, I mean “schedule the delivery”, since I had called them earlier and perhaps disrupted their process. But, no, it was a call to inform me that FedEx was not scheduling deliveries for my area because of the weather (!) and that the package had not yet left PrecisionRx and that they’d let me know when it does and that hopefully it will be here by Monday. Yes, let’s hope for that, shall we? Hell, let’s hope it gets here by next month, or the month after, because why should we have high expectations or anything stupid like that. And, FedEx, really? You’re not picking up in Indiana because it’s RAINING in Massachusetts? I have no words (HA! Totally wrong, yet again, I have a LOT OF FUCKING WORDS!) Yes, it’s a bit windy out there, but I was able to get out to pick up some cat food, so, really? Not so bad. Maybe there are flight delays along the way or something, but you could still pick up the package. You could make an effort to get the thing somewhat closer to me. You could try.

But, that’s the thing. No one in all of this was trying. Oh, everyone I spoke with was very nice. VERY nice. I have no complaints about the people, just about the process, because there’s no reason for any of this. If I got a prescription for Viagra (which is the only thing coming to mind as a prescription you could really do without when it comes down to it, especially since I’m a woman!) right now I could have the little pills in my hands in less than an hour. But have cancer? Be prescribed a real drug (yes, it’s new, but Tykerb has been on the market for more than two years now), by a real doctor, for a real life-threatening disease? And expect to wait a week. Expect to be jerked around by a process designed to cover some asses, I guess, why else? Expect to have your efforts to speed up this process be thwarted at every turn. And expect that everyone you talk to about it along the way will expect that you’ll be ok with it.

I am not fucking ok with this. I’m just not.

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(peek)

Still there?

OK.

So here’s the deal. You suck. Also you are idiots. Because if that thing does not get here on Monday, I am going to start making some calls. That’s not good, you see, because I don’t yell. Oh, no. I take names. I don’t mean kick asses and take names, I mean I will get your name, and your manager’s name and that person’s manager’s name and right on up the line. And with a very big chunk of Yankee Ice between my teeth, I will ask what you plan to do about this. None of you will know how to change it, so I will ask who DOES know how to change it. And so on. And I will be such a polite, precise, stabbing pain in your ass that you will be ready to buy the company just so you can give it to me and let me change it for you. Which I will not do because it is your job, not mine.

So get it done.

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Think fast!

Ha HA! I gotcha. You were all relaxitatin’ like old ladies in Florida, languidly beckoning the cabana boy to your lounge chair by the pool and ordering big fruity drinks with little paper umbrellas… weren’t you?

Yes you were, you liar, I saw you. You looked a little TOO comfy, see, so breast cancer decided to smack you upside the head with some suckiness.

Here’s our intrepid reporter and resident chemo-junkie, Stacey!

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Oh…hell.

Remember when I asked what that thing was that they called Good News? Well, turns out the answer is “Bad News”. I don’t know why I’m surprised by this.

Apparently I forgot to take something into consideration, or was considering that thing incorrectly, or my considerer is broken, or I stepped on something squishy in the middle of the night, or I didn’t give it a nice enough Valentine’s card, or I JUST DON’T UNDERSTAND (though that could be the teenager). The numbers that started going down? The ones that started going up around the time we discovered the diabetes? The ones I thought were going down because the lesions in the liver were going away? Turns out those numbers were just going down because the diabetes was being controlled (not a bad thing, but not the good thing I wanted). In fact, the lesions weren’t affecting the liver function much at all (yet). This is goodish, but it also means that while I thought the old lesions were going away what was actually happening was that new lesions were appearing. Yeah, that sucks.

I found this out on Wednesday and it is now Tuesday and I’m only just now starting to feel a bit better about the whole thing. Do you know what dread feels like? If not, then I’m happy for you, but I’ll inform you now that it’s a burning in the pit of your stomach and an overwhelming feeling that you’re about to fucking lose it. It is not a feeling you want when you’re trying to celebrate your daughter’s 7th birthday. It’s not a feeling you want when you’re trying to enjoy the Olympics. It’s not a feeling you want when you’re trying to keep up at work so that they don’t fire your ass, which would really add insult to injury. IT’S NOT A FEELING YOU WANT, LIKE, AT ALL. So, I was happy to find this morning that I’m feeling a bit more straightened out than I was. It still sucks, though.

The new plan is Tykerb. They now use it in conjunction with the Herceptin because they do the same thing in different ways, and also because it’s hard to tell when the Herceptin is no longer working and needs a boost. The downside is that the insurance company puts you through hoops to get it (I STILL don’t have it 6 days later). I’d start complaining about Empire BlueCross BlueShield if I thought that this was in any way unique to them. Also whenever I call them I end up talking to the nicest people ever found on the other end of a phone. They sound nice (soft, lilting, southern accents), take care of problems, and always call back when they promise they will. Empire should thank its lucky stars they have these people because without them I’d be having a Twitter fit to end all Twitter fits.

TFDB also prescribed Aromasin, which is a steroidal aromatase inhibitor. (Say THAT ten times fast!) That means that it prevents the aromatase enzyme from converting androgens into estrogen, which is good if you have estrogen happy cancer. Wikipedia describes this action as “suicide inhibition”. I love that term! Hee! TFDB says that 80% of estrogen found in the body comes from the ovaries (problem solved when they were removed), so to address the other 20% you need to prevent the body from converting stuff into estrogen. It’s an estogen free zone up in here! By the way, I was just looking at Wikipedia to see what effects having next to no estrogen has on the body (none of which I seem to be experiencing) and I discovered that mushrooms (the table kind, not the “special” kind) have anti-aromatase properties. Wikipedia then says this: “Women who consumed mushrooms and green tea had a 90% lower incidence of breast cancer.” Cool!

TFDB also suggested that I start taking a daily aspirin, given the recent news about aspirin and breast cancer rates (http://www.msnbc.msn.com/id/35426947/).

We’re going to do 8 weeks of the Tykerb and then test again. If nothing has changed then it’s on to a Taxol type drug, which would mean losing my hair again. Feh; hair shmair, I don’t care, but I’m hoping that this works so that I don’t have to live up to those words. I’m not keen on feeling the dread again.

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PUBLIC SERVICE ANNOUNCEMENT: It’s now February; it’s safe to take down your Christmas lights, AUNTIE DEB!

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Thank you, Auntie Stacey, for that depressing report on the recent suckiness, and NO thanks for your WOEFULLY UNINFORMED public service announcement.

It is, in fact, NOT safe to take my Christmas lights down. They’re the only thing keeping the government from reading our minds with radio waves. Just wear a tin foil hat, you say? AU CONTRAIRE, MON CHER! New research has debunked such ridiculous ideas, and today the well-prepared conspiracy nut protects the homestead with a barrier of electricity, MOST EASILY CONCEALED as simple, everyday Christmas lights. These also act as excellent protection against alien abduction; the nasty critters think your house is another spaceship and just blink a little “hey, man, how’s it hangin’?” as they pass by.

So if you want to put YOUR family in danger by following these dangerous seasonal trends, go right ahead, but when the black helicopters start circling or Quimby the cat is replaced by an alien replica, don’t come cryin’ to me! (You can send Ruby over, though — that kid rocks.)

Today’s deflection of unpleasant emotions brought to you by Yankee Ice. Got troubles? Well, keep ’em to yourself! Pop a refreshing cube of Yankee Ice and butter won’t melt in your mouth!

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.