October 06, 2003

Hospital Week 1: Hurry Up and Wait

Week 1 of hospital was pretty much occupied with two things -- surgery to place the double lumen port in my chest so the chemo can go lickety split straight towards my heart, and hitting me over the head with a large enough chemical brick to allow me to tolerate getting a FREAKING TERRIFYING MRI.

Port placement was not too eventful. The anaesthetist was able to find a vein without the three failed attempts it had taken prior to the previous procedure. The surgeons were affable and charming, although they all seemed to be wearing LLBean surgical hats, with labrador retrievers on them, and hunting scenes. For obscure reasons, this worried me.

They decided to do the port placement without a general anaesthetic, instead using what they call MAC sleep -- a sort of semi-consciousness with amnesia to follow. (It strikes me that this must leave the body with all sorts of trauma traces without the mind having any access to their source, but wotthehell, it's fast, cheap, low risk and the insurance companies doubtless love it.) Semi consciousness or not, I have no memory of the procedure whatsoever, and woke up without the post-operative sore throat you get from placement of an air tube.

Last thing before the surgery, the surgeon comes out and rather worriedly says, "Look, because you're so slim, I have to warn you the port will show more than it usually does. There'll be a distinct bump on your chest." I tell him that a bump on my chest will be the mildest of my upcoming aesthetic problems and drift off to sleep, patting his hand affectionately, liking being called "slim".

It's only when I wake up post-surgery that I realise "slim" was his euphemism for "very small breasted". Hrmph.

The second great big issue in this first week of hospital was the MRI. Four in the morning they call me up to give me a brain MRI. Give me an Atavan, wheel me up there.

And I balk.

I won't even go into the same room as that horrific coffin thing. I tell the attendant that there's a fair chance I'll be dead before too long anyway, I certainly don't need to practice. In tones meant to be soothing (and it's admittedly hard to be soothing at 4am in a cold, neon-lit anteroom with a giant pulsating coffin next door), he says not to worry, they'll blindfold me and put earplugs in, and it'll all be over in forty minutes, no sweat. Somehow, this fails to reassure me.

It is at this moment entirely and starkly clear to me that if it comes down to a choice between death this week and the MRI now, death it is. It's not even a true choice – there is simply no way I will go into that thing while a fraction of consciousness remains.

Much abashed but still freaked, I get wheeled back to the unit. My nurse is a bit reproachful: I should have told him, he'd have pumped me full of IV Atavan. Fat chance. If I can move a whisker, I don’t go in that thing.

There begins a curious and protracted battle over the production of an MRI of my brane. I am sheepish and apologetic, feeling like I've proved myself a craven coward (well, in fact I have, to be blunt about it). My oncologist is telling me tall tales about a patient who was a veteran submarine captain who had to be completely anaesthetized to go in the MRI in an attempt to soothe my mortified feelings. Neurosurgery says they won't place the port unless I have an MRI done. The oncology nurse is phoning around to get me an appointment in the open MRI, which is half a block up the street.

Mirabile dictu, on Tuesday night she twists a couple of arms and gets an appointment for 8.30 Thursday morning. But there's a new policy in place: too many hospital departments have been dumping deathly ill patients on this profit centre (oops, I mean "department"), and they aren't equipped to do patient care. So they now require the presence of an RN or MD from the patient's unit for the entire appointment, which can last up to half a day. At this, there is an instant face-off between Nursing and Medicine. Nursing says, (and I think they have the right of it) that they're short-staffed, they have 24 patients, two of whom are extremely high maintenance (nope, neither of them is me, despite my MRI performance), and to lose an RN for half a day would be to quarter their staff levels. The Resident in charge of the Interns says that Thursday mornings are grand rounds and that's her doctors' "one educational opportunity".

At this point I lose it with the doctor. I tell her that a half day out of a multi-year education for one M.D. doesn't, in my view, exactly measure up to putting off placement of the port and hence chemotherapy for someone with a highly aggressive cancer. I tell her that it appears that her priorities are to satisfy the bureaucracy first, medical education second, and her patient's health last, and I find this completely unacceptable. She, who is fundamentally a really nice woman caught between a rock and a harridan, backs down and goes to the RN and says OK, let's do it, and a med student can accompany me. RN phones Open MRI office. Too late – we hesitated, and they have filled the appointment. Nothing now until the following Tuesday.

So now they go back to the thought of doing the closed MRI with anaesthesia, and I've gone from shrieking stridently to whimpering fearfully. I keep telling them there's no way I'm going to get into that thing if I'm conscious. Meanwhile, the MRI folks are sniffing that they gave me an emergency appointment before and I refused it, and my name is now at the Bottom of the List. More negotiations ensue, thanks to the admirable oncology nurse.

Bottom line: I'm to have MAC sleep again ("Just don't let me wake up in that thing", I keep saying, clawing at passing anaesthetists like the Ancient Mariner) and the MRI ghods have agreed to let me go up there first thing on Monday morning, with the thought that Neurosurgery will have nice holiday snaps of my brane and can place the Omaya port that afternoon.

Primed with an Atavan, I'm wheeled up to the MRI suite on a gurney. Might as well have been a tumbril. The bedside anaesthetist had said he would use MAC sleep, but the MRIside anaesthetist says airily, "That never works too well. I'm going to give you a general". He keeps reassuring me how he'll be able to monitor me and will know *instantly* if I stop breathing, which fails utterly to speak to my real concern. Namely, whether he will know *instantly* if I start to come round. But they at least have the consummate tact to wheel me in to the MRI room head first, so I don't see the Dreadful Coffin.

So. I wake up, sore throat from the airway tube thingie they place down your throat, and it's done. I'm thirsty as hell, of course (npo since midnight and it's now about eleven am and I'm dehydrated), but it's a small price to pay for getting my brane screwed around with by neurosurgeons, so we can Get This Show On The Road. So back in my room, I watch the lunch cart pass me by with hardly a whimper.

After a while, I begin to ask when the surgery is scheduled. "Not sure. Waiting to hear from Neurosurgery." Still waiting at 1.00. At 1.30. At 2.00. At 2.30.... Finally at around 3.30, Dr. Puppy slinks in, looking like he's about to be kicked (and he is). He begins to babble that the surgery isn't in fact going to happen today. "Ummmm. Tomorrow! They're going to install the port tomorrow! Tomorrow morning! One of the neurosurgeons has a vacation day today and they're having to double up. And in neurosurgery you get people coming in from Emergency with trauma, with their heads all smashed in, and it's not something that can wait." Flinching, he backs out of my room.

Ah well. I got up, poured myself a large cranberry juice and water and drank thirstily. And after a fight with the kitchen, which was intent on keeping me npo, I even got supper.

Posted by maddy at October 6, 2003 09:48 PM
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