And thus it begins
Day 1: (today) Monday – pregnancy test first thing in the morning even though you can’t get pregnant with no ovaries you communist bastard chief of nuclear medicine! I give up and just get the damned test anyway.
Then to the outpatient surgery recovery room at noon for check in. Once they verify who I am (and my insurance, of course), they order Thyrogen from the pharmacy and park my ass in a recovery room bed and hooks me up to the BP monitor. Something like
3 days an hour later the vial finally arrives from the pharmacy just down stairs – at the discount rate of $2600.
The nurse comes in, checks my vitals again and sticks shot #1 in my ass. Then I get to park that ass back in the bed for at least 30 minutes but by the time the nursing staff get around to me it’s more like 45-60 minutes. After they have determined I am still, in fact, breathing and not suffering from anaphylaxis, they send me out the door.
Day 2: No pregnancy test required. Back at the hospital at noon (it’s like a standing date that costs more than any hooker and involves sharp objects) and another recovery room bed. After verifying everything, and hooking me up to the BP machine, they fill the other shot. The nice thing this time is the meds are on the floor with the nurses so no waiting for the pharmacy – bad thing is the thyrogen has been in the refrigerator and that shit is cold!
Shot in other butt cheek.
By now I’m probably feeling like hell because I’ve been off my meds for three weeks and the thyrogen will make me nauseated and really, really tired. That’s okay, part of the process.
Day 3: Blood tests to see what my “unsupressed cancer marker levels” look like – pretty important for ongoing cancer patients. Anyway, back to the hospital at noon but this time to nuclear medicine (just down the hall from outpatient surgery recovery). I get to talk to the nuc med tech who are all awesome then, after they have been through all of the paperwork, precautions, warnings, and re-verifying my insurance and pregnancy test results (this is the best time to screw with them, BTW) they clear the way for
Lord Voldemort the nuclear medicine doctor.
Mr. No Personality comes in, looks over all of the paperwork, asks me if I’m pregnant or there is any chance I could be (side note: although this is a perfect opening, I’ve discovered he has zero sense of humor and any joking just results in delayed tests and more blood work so I let it pass).
He’s like the TSA agent of medicine.
After he has blessed everything he disappears
in a puff of smoke and a technician reappears.
The technician leads me through the back corridors to the top-secret room only accessible with combination of badge swipes and numeric codes on keypads. Passing the Geiger counters, you get to park yourself in the room and stare at the warning signs.
Finally they wheel in a large metal cart with a pretty ominous looking heavy lead container. The technician (who is wearing one of those cute little badges that changes color when exposed to too much radiation – so unfair, where is mine??!!) places the container under a negative-pressure hood and unscrews the top. You would think that he was handling rods from a nuclear reactor at this point.
This is also about the point that the first time thyroid cancer patients tend to have a pucker factor of 10 (and we ain’t talking lips here folks) with the realization that they are about to willingly ingest something so deadly. Willingly.
Then, in a very anti-climatic move, you get to see that it is not a glowing, green rod like out of The Simpson’s – it’s just a little vial (some people get capsules but, since my hospital is so close to a nuclear reactor, I get radiated iodine in saline solution). Yum. The tech hands me a straw and instructs me to slurp it all. Then adds more saline and I get to do it again. Then once more. Have to be careful not to spill any of it and to make sure I do it all under the hood.
When I’m done, I am instructed to run like hell and not take the elevator. I have to go out the back stairs to avoid being around anyone for an excessive amount of time.
Day 4: supposed to be away from everyone. Just for 48 hours ’cause this is just a scan dose. If it was a treatment dose it would be 10-14 days. But, alas, I will go to work ’cause that’s what I do. I will avoid everyone there though (and the bird, and the dogs at home) because I don’t want them to go through this shit because of me.
Day 5: Scan day (happy dance). Back at the hospital at noon (I told you I had a standing date!) but this time to inpatient radiology, deep in the basement of the hospital. I know so many deep, hidden places in this place I could give tours. Anyway, another amazing nuclear medicine tech (one that reads the damage the first one did) 🙂 takes me to the room.
I lay down on a very uncomfortable metal table and they lower a very large, very thick metal plate over me – within like millimeters of my nose.
I get the “don’t move, at all, try not to blink too much or swallow too much” as it slowly SLOWLY moves over me from head to toe (literally). It takes about an hour and I found that once it passes your neck you can turn your head slightly and see what is going on with the scan. That’s when you get to see the constellation that is the radiation in your body.
Last year it was lurking in my liver, simmering there like some fucked up Dinty Moore, pink-slime stew on crack. Anyway, last year it did NOT take up the radiation (insolent bastard that cancer is). That would indicate it has become non-avid which is double-speak for “untreatable.” And that kind of sucks.
But, my dear, darling endocrinologist wants to make sure so we’re doing this one last time.
I’m okay with that.
So, after freaking out all day I’ll finally get the radiologist’s interpretation of the scan later Friday night or sometime Saturday and hopefully the results from the blood work taken on Wednesday. I only get them back that fast because I can log into the hospital’s system and get all of my test results which KICKS ASS (in case there are any health care providers lurking out there). Anyway, about the blood work, it takes a couple of days to get those damned things back.
unnecessary pregnancy test = immediate results
necessary cancer marker test = 48-72 hours
Regardless of the results, three months from now I’ll be getting more labs done.
– for the rest of my life –
And, sooner or later, another CT/PET scan.
Might even need another bone scan too.
Then next year we’ll buy another ticket for the cancer ride and climb back on. It’s like a ferris wheel, highs and lows, around and around you go but you get off and on at the same place every time. Usually you puke too.
Unless the scan is negative but the blood work is positive.
Then they really don’t have a game plan for what type of ride you might get.
And that, my friends, truly sucks (and also makes you puke).
Time to put on the big girl panties and deal with the annual cancer week! I’ll keep y’all posted.
Day 1 update: So here’s the update y’all. First, remember that with cancer all bets are off. My blood work this morning is in and, despite your prayers, NO, I’m still not pregnant. 🙂
However, my TSH (thyroid stimulating hormone) level is off-the-fucking-charts high.
Normal range is 0.3-3.0.
Cancer suppression should be below 0.1.
Being off meds for two weeks my levels are at 93.15!!!
No wonder I feel like a large, bloated, depressed sack of shit.
That level should be unheard of for someone who has been through two doses of I-131 treatment and should (should) have no active thyroid tissue/cancer left. Hence why the doctors order the shots.
So, I get to skip the shots because they were supposed to artifically get me to a higher level of TSH.
So . . . could be an indicator of simmering Dinty Moore pink-slime cancer stew brewing somewhere. We’ll see what the scan shows (or doesn’t – which is much, much worse).
As for now, no shots (there goes my hour of R&R each day).
Keep tuned – this shit is so much fun and likes to change quickly.
Day 2 Update: Just got all of my labs back (I had the Tg run early since my TSH was already so high). Just like I suspected with the TSH climbing so quickly.
(use Poltergeist voice here): IT’S BAaaaaaaaaaaaackK!!!
(actually, it never went away from last year’s treatment).
Tg went up from 0.1 to 3.2. Any climb above 2 after multiple RAI treatments is considered a recurrence and 3000x increase is more than ample proof.
I fucking hate cancer.
The nuclear medicine department called. They want me to do the scan dose NOW versus tomorrow. It’s just to prove, one last time, that I’m resistant. Andy (the most amazing nuclear med tech *ever*) said that with my TSH so high he’s worried that I’m going to have a “cardiac event”.
Glad someone gives a shit! 🙂 My endo is out of the country until July.
Last year the treatment dose showed: “Diffuse uptake of I-131 within the liver suggests ongoing metabolism of iodine 131 labeled thyroid hormone. However, no sites of locally recurrent or metastatic papillary thyroid carcinoma are detected.”
Which is double speak for non-avid mets.
I AM THE 1%
and not in a too-much-money-for-my-own-good way either
Thursday Update (yet again): Back pain has been *horrible*. Got an emergency appointment with my GP since the endo is AWOL.
He put me on lidocane patches since I won’t take narcotic pain meds (they wear off to quickly and really, really fuck up my already fucked up GI tract).
Have an emergency MRI for my back tomorrow at 745. GP thinks its mets in the spine (t7) based off of last years MRI and my I131 scans and Tg.
So MRI at 7:45. WBS at noon at different hospitals.
Did I mention that Fridays are my busiest day at work?!?!
Did I mention that cancer SUCKS?