Monday, May 15, 2006

comedy of errors

That title is the best description of my adventure into the c-bomb. And today, as with my prevoius endeavors, was equally baffling...

My morning was busy at work, which was nice to have a diversion. We had a lot of long treatments, IVs to start, labs to draw, new people to teach... it was a hustled morning. The worst part about the morning were my very well-meaning coworkers who wanted to take me into their arms and tell me that I'm going to be okay.

A nice gesture, I agree, but it just wasn't necessary to make a theatrical production of this thing. Please tell me you'll be thinking about me, ask me if there's anything you can do... But don't grab me like Clark Gable dipped Vivien Leigh in Gone with the Wind and ooze me with sentiment and nothings until you cry. Your tears, although very sweet, are not going to make me feel any better about my upcoming treatment.

Next, send in the clowns... Since my diagnosis I have been trying to piece a strategy of what will be taking place for my treatment plan. You may remember that I have made multiple calls to the physician's office looking for literature. When I asked for written literature about my upcoming treatments, his office nurse directed me to a webpage for more information. Earlier last week I called his office with a list of 5 pertinent questions, to which he quickly returned my call, saying that "it was going to be okay" and I "shouldn't worry so much".

I don't particularly consider it "worry" as much as just wanting to know what's going on. Gasp! Dare I ask for a generalized strategy? I do know there's a certain ignorance of a lot of patients I work with who will do anything I say because I literally wear a white lab jacket. Honey, I'm more educated than that, and if you want to see me worry, don't tell me what's going on and then ask me to blindly follow your lead. Don't jump too far ahead or I'll be forced to kick your surprise no-no.

So I go to my afternoon appointment. Some man without a nametag greets me and takes me back to the part of the office that has a scanning machine. I assume that he's some kind of nuclear technician. We have this conversation:

me: (sitting down, still in uniform, pulling out a notebook page) I have some questions before we do this.
him: Well, we're going to give you information today.
me: Good. I've been doing some research, too.
him: You can't trust those webpages on the internet. Not all of them have good information.
me: I went to the one that this physician's nurse told me to go to.
him: Still, you can't trust what you read on any of them.
me: (internal scream, not saying that I've taken research classes in college and am not an idiot)

We go over some of the questions.

me: So what dose will I be getting today?
him: Four milicuries.
me: Four hundred? Isn't that high?
him: No, like the single digit - 4.
me: That's not enough to ablate the remaining cells in my neck.
him: No, it's not.
me: Then what's the whole point of this?
him: The scan on Wednesday.
me: Well, it'll show hot spots if we don't ablate, right?
him: Yeah, if there's still tissue there.
me: Of course there's tissue there. There's tissue around the vasculature and parathyroid glands. I thought that was the whole point of the scan.
him: It is.
me: Then why are we just using 4 milicuries?
him: For the scan.
me: (marveling over the wonders of patient education)
him: After the scan the physician will decide what dose you will get for the treatment.
me: So it's two doses? One for the scan, then one to treat?
him: Yeah, if they decide to treat.
me: What is the "if"? We know there are still cells there.
him: We do the scan to decide what dosage is needed for the therapy.
me: (wondering why it took so long to get that answer to the question)

We go over some more questions with equally exciting outcomes.

him: Are you pregnant?
me: No.
him: How do you know?
me: (referring back to my notebook page) I knew you'd ask. I've had two regular cycles since the surgery, the last one being these dates.
him: Are you on the pill?
me: No. Not since last October.
him: Let's get a pregnancy test anyway.

I follow him around and pee in a cup. I labeled it, too, because it seemed like the nursey thing to do, and he hadn't done it. And it wasn't like there was a little hood to place it. Or a lid for it, for that matter. So I labeled it.

him: (returning) Well, you're not pregnant.
me: Good.
him: Good?
me: Well, that would make for really bad timing, wouldn't it?
him: Why's that?
me: Because the radiation would be bad for the baby...
him: Right.
me: (duh look, glancing around for the candid camera)

We go over the remaining questions. He tells me that this small dose should not cause any side effects. I don't have to go to prison yet. And I will have to continue the low Iodine diet for 2-3 days after my big dose of radiation, "if" I get it, which we know I will because it was cancer and there will be remaining cells to ablate. I'll probably get the big mama-jama-make-the-thyroid-cells-die-like-pigs dose on Wednesday or Thursday, but, like everything else on this journey, we'll find out when it happens. And he assured me any other questions will be answered on Wednesday.

He gives me the pill to take, a boring-looking navy blue capsule, and tells me I can't have anything to drink or eat for an hour. He invites me to leave.

me: (on my way out) Weren't you going to give me some written information or something?
him: Oh, yeah.
me: And get me to sign a consent or something? You probably need that since I took the pill already.
him: (color fading fast from his face, about to poop his pants) Yeah, I just need you to sign a few papers.

And I didn't say anything ugly. I had lab drawn, which went well. The Hater and I are excited that I'll have another day of whatever before the scan. He's officially doing the cooking and I'm eating on the finest chinet and solo dinnerware.

And, like we've been doing, we continue to wait. Send in the clowns, already, we can hardly stand the pre-game show...


nicole said...

It pisses me off that so many doctors think their divine knowledge should go unquestioned. Whatthehellever!

I applaud you for not only doing the research but for demanding to have your questions answered despite how obstinate the doctor was.

I've heard someone say that whenever a doctor gives you questionable medical advice, write down the doctor's suggestion and ask him to sign it. If he refuses to then it's probably a good sign that he's not all that sure of himself. Doesn't really seem to apply to YOUR situation but I thought it was a brilliant suggestion. :)

Vol Abroad said...

I don't really applaud you for doing the research, I simply wouldn't expect anything different from you. I do applaud you for continuing to push - to call them on their reluctance to give you information.

It makes me really angry when I encounter this attitude. The patient and doctor and other medical professionals should be a team in the treatment of illness.

Molly Jane said...

Jesus...I'll be keeping my fingers crossed that you get a different tech on Wednesday. Cheers to your plastic bubble!

Kate said...

Lord, don't you hate how when everyone is trying to be nice it's exactly the WRONG thing for them to be doing...

Not to mention radiation dude being a total nut (I was going to say something rather meaner, but decided to hold my keyboard).

genderist said...

I've never been a part of an us-vs-them medical arena, and have been privileged to have worked with excellent patient advocates and educators... My naivety about the ability to access a mere plan, even if it was subject to change based upon test results, has left me astonished --

But moreso I'm worried about all of the normal-people-patients, people who don't know how to use the internet, much less how to differentiate between rhetoric and evidence-based data. I'm worried about the people who say, well, she's the doctor, she must know what things I should know right now, what symptoms I can expect. She'll tell me if it's important.

It's exasperating to me because I don't think I'm demanding too much of their time or asking things that are unrealistic... and being told that there were actually going to be two doses of radiation, the second being the "real" dose, is something I could have better prepared myself to hear, had I known that was part of "the plan".

Most of my more-steady readers are educated people, people whom I would also expect to ask realistic, educated questions if faced with any real-life drama, be it work-related, medically-related, life-related... even if it's as easy as looking up safety information about a car before you decide which model to buy. We are not the people I'm worried about... because for the most part we're smart enough to know what we don't know, to seek understanding on a level that we can comprehend.

Whereas, most of the patients I treat have not had the same educational opportunities we have had. They seek advice from Uncle Tommy, who almost bought a car six years ago, or from Cousin Jan, who worked in a nursing home for thirteen years as a technician.

Those are the people who The Hater and I have grown to be more and more concerned about during our journey into life with the c-bomb.

Anonymous said...

Remember, you're in Uglyhoma, but, I guess this happens everywhere.
We may pay more for medical treatment than any other country on earth, but we are not getting everything we pay for.

Good luck. You may need it more with the people than the C-bomb.

Anonymous said...

Thanks for sharing this. I've been dealing with some issues of my own since the fall of last year and it helps knowing that my questions and research are the right way to go. I've had a hell of a time trying to get someone to hear me, to understand that what I am saying is not exagerration. I'm still in the process of trying to find out what my deal is, but I feel confident that I am going about it the best way I can. I don't know very much about the medical profession, but I am web savvy and have been doing lots of research. The hardest part for me is trying to get someone to do the tests that I want done...but since everything is free up here it seems harder to get people to listen to what I want.

Good luck to you and thanks again for sharing all of this info!