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photo by Sheri Dixon

Saturday, May 18, 2013

Back Into the Vortex

Hopefully nothing.

It's nothing.

It has to be nothing.

The lump under Ward's arm is nothing.

We're going to Houston just to verify the very nothingness of the lump.

Should be easy. Straightforward. Stuff they do every single day at a CANCER hospital where most of the patients are not only from out of town, but out of state and some from out of country.

Schedule shit in an orderly fashion and a timely manner.

See? Easy.

But it's not. I had a helluva frustrating morning yesterday just getting things ironed out, not on my end- I've arranged for work and home and fixed our incredibly complex schedules to accommodate for being gone Sunday afternoon through Tuesday evening.

And I thought that just this once (out of say 4 dozen times in the last 7 years) we had a schedule that had fallen together seamlessly. Because it should be easy.

The dermatologist found a lump and notified Ward's primary care physician in the Head and Neck center because that's where his original cancer was- on his head. So that's who scans him every 6 months to be sure it doesn't come back.

The Head and Neck physician said, "Yikes. Lets do a PET scan, an ultrasound and a biopsy to be sure it's nothing. I'll order it and see you after all that is done to tell you it's nothing".

So they scheduled. Both the PET scan and ultrasound appointments on the internet patient site said "PET scan/ultrasound/Head and Neck". I called Head and Neck to be sure they were not taking images of the head and neck because the lump isn't there. It's in a lymph node on his side.

After five requests for verification, finally someone told me, "Yes- it just says Head and Neck because that's the department who ordered it". Fine. Makes sense.

Here's our incredibly simple schedule-

Drive down Sunday.

PET scan Monday at 6am

Ultrasound w/needle biopsy Tuesday 6am

See the Dr. and be told, "It's nothing- go home". Tuesday 9am

Go home.


Yesterday (Friday) we got the calls from PET and Ultrasound to tell us what meds Ward can take and what he can eat/drink before the scans.

PET scan department said, "We'll be done by 8:30 and you take your morning meds at 9- don't do anything differently but be sure no carbs starting Sunday morning because you're diabetic and if your sugar is too high we can't scan. And nothing to eat or drink after midnight Sunday night."

Cool.

Ultrasound department said, "Nothing to eat or drink after midnight Monday night and withhold coumadin for three days prior."

*Wait. What? I told her no one told us about the coumadin withhold.

"Well, I'm telling you now". (said in a sort of snotty tone)

"So you need to get with your cardio doctor to see what he wants to do- he may want to bridge with lovenox injections the days he's off coumadin".

This was Friday at 11:45 am. And I was just supposed to magically conjure up Ward's cardiologist (whose office, like many offices is officially open till 5pm on Fridays but who really clear out starting at noon and are literal ghost towns by 3pm) and ask him about coumadin withhold, and who may or may not order lovenox which is something a lot of pharmacies don't keep on hand.

Awesome.

I called the cardiologist and talked to the nurse who needed to get ahold of the doctor for further orders. Regarding the lovely advance warning, her only comment was, "That's just crazy". No shit.

'Round about 1pm the ultrasound department called back. Seems they had been sent Ward's chart by mistake. They were the Neurological Ultrasound, which is different from General Ultrasound. I don't know and I don't care. She said they had contacted Head and Neck and that they were putting in for an appointment in General Ultrasound.

I asked her if the coumadin withhold would still be important for General Ultrasound and she didn't know.

She said, "All I know is that they put in for a General Ultrasound of Mr. Dixon's head and neck, just like we were going to do."

*Wait. What? After I explained (amazingly calmly) that we don't WANT Mr. Dixon's head and neck ultrasounded because that's NOT WHERE THE LUMP is, she gave me the number for General Ultrasound and told me to call Head and Neck to be sure they had the orders right.

So I called General Ultrasound and they said, "Golly- it says head and neck- I'll call to be sure".

So I messaged Head and Neck and asked them "What the hell?"

I checked the internet patient site and they had scheduled the General Ultrasound with fine needle biopsy for

Tuesday 2pm

I called General Ultrasound and told them that Dr. H is good, but not so good that he can see the results of a scan and biopsy FIVE HOURS BEFORE THEY'RE DONE.

"Ohhhhhh...no one told me that- they just said schedule for sometime Tuesday".

Why the HELL would you see the doctor BEFORE the scans???

(I actually tried to do this correctly- using italics instead of capital letters, but it slows me down so deal with it)

She said, "We're totally booked Monday and early Tuesday- did you try calling the department who sent the order to the wrong ultrasound office?"

Yes. Yes I did. And they sent it to you, my little pumpkinhead- and it's so not OUR fault that it got messed up. It costs us a minimum of $500 every time we go down there with hotel and gas and food and we're doing this THIS week in ONE shot, and you're the scheduler so you need to make it so.

I was much nicer on the phone. I only swore a blue streak after hanging up. The schnauzer is still trembling.

She made it so.

I asked about the coumadin withhold and it's just a general ultrasound- no limitations at all- eating, drinking, medications...none. Sweet. New ultrasound/biopsy is 7:30 Tuesday. And what area are they ultrasounding, pray tell?

Left side lymph node something or other under the arm. OUTSTANDING.

The lady from Head and Neck called me regarding the message I'd sent and she pulled up the order and verified that yes- the PET scan is of Left side lymph node something or other under the arm. FABULOUS.

The nurse from the cardiologist called to give me coumadin withhold instructions and I said thank you very much but we don't need to do that- they sent his orders to the wrong department. "Crazy" she said. No shit.

So we're straightened out I think.

Here's what slays me and has slain me for seven years.

This is the best cancer hospital in the country and one of the top two in the world.

Cancer is all they do.

Out of town patients is a high percentage of what they do.

They're so specialized the schedulers do NOTHING but schedule, and each department has multiple schedulers.

How can this be so messed up so consistently? Honestly, Ward's case is NOT difficult- surely not any more difficult than anyone else there- this is the place people go who are too difficult for 'regular' hospitals. And yet, MOST of the time there is something that needs adjusting on our schedules- not to accommodate our time constraints, but just to make a damn bit of sense...like doing scans and blood work before seeing the doctor.

Why do *I*, a little old lady who barely made it through high school, have to watch every damn thing they do?

What happens to people (and there are many people who fit this description) who figure, "They know what they're doing- I'll just follow the schedule"?

How many die who don't need to? Just because no one is watching the details and by the time everything is straightened out it's too late?

This bothers me more than a little. You may have noticed.

I guess I should just be happy when they tell us, "It's nothing- go home till July when we do your regularly scheduled 6 month scans".

I'm sure that's what other people do.

And I will be happy- deliriously joyfully thankfully happy, because right now I'm almost paralyzed with the fear of the "What ifs?" I will hug the stuffing out of my husband and come home and hug the stuffing out of my son, and return to the laughably labled 'normal' of our lives. Till next time.

But this sort of consistently shoddy scheduling crap still bugs the shit out of me and never ever goes away.

It sits on my brain- a tiny living smudge of discontent, poking at me with needles of doubt perched next to the razor-legged spider of fear weaving her web of uncontrollable things that stick to our family over and over again.





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