follow up (the whole body scan experience)

I had my follow up whole body scan this morning.

It really isn't so bad, dragging my butt out of bed at 6:30, cleaning my teeth and face, getting dressed, and hopping in the car to get to the hospital in the heart of downtown Phoenix by 7:45 so I could check in. Obviously there are better ways to spend a morning, but it really isn't that bad. If, on the other hand, that trip represented my daily commute, I would probably be suicidal after a month.

At the registration desk, whoever entered my appointment had omitted my middle name, and so the computer didn't recognize me. I told the woman who was registering me that I was just there on June 3, and I have been a patient there since November. It took a fair amount of I-don't-know-what to consolidate the two records, and then to figure out how much I owed them for my procedures. I spent over a half-hour on registration!

Then, on to the scan. My wait in the imaging department was mercifully brief, and then I spent another hour+ in the scanner. Being in the scanner is not difficult, but it's not relaxing, either. You really can't fall asleep because you have to hold yourself together, more or less. I don't know how bigger people manage on those narrow beds! I'm basically a twig (scant 130 pounds stretched out over 5 feet, 7+ inches) and I didn't feel very secure. The velcro straps they put over you don't really help all that much, but they do help.

Today my hands got a little numb; on the 3rd, my arms felt dead for their entire lengths. So today was better, although I have no idea why.

I wrote on the 3rd that I was thinking of that classic Gloria Swanson line, All right, Mr. DeMille, I'm ready for my close-up. A nuclear scan is about the closest close-up you can imagine. The scan plate starts out over your head and neck, and it is literally only an inch or so from your nose. I have said to more than one technician that I'm always worried that I'll sneeze and give myself a concussion. It's a funny comment, but it's also a serious consideration. The scanner plates are large -- probably at least 2 feet, square -- and fixed in place by their robotic arms that move them around. It's not like you could just tap the thing and have it swing out of the way.

My other thought on being in the scanner is that it is not so much like the traditional coffin as it is like a sarcophagus, the Egyption fitted coffins that all those mummified pharoahs were placed in. Even with the sarcophagus feeling, I prefer the nuclear scan to an MRI, say, because it's very quiet. Every time the MRI noise went off I felt as if I would jump out of my skin, no matter how hard I tried to brace myself for the next round. It's just so loud!

On the 3rd, I lay on the scanner thinking, I bet I'm going to light up like a Christmas tree, but the scan image itself is a negative, so the more uptake there is a given area, the darker that area appears. On the 3rd, my scan was clean, except for the expected areas of uptake, like the salivary glands, nasal mucusa, a bit in the liver and stomach, a little in the bladder. The preliminary scan they did on the 2nd showed a faint shadow in my neck, but in the final scan on the 3rd, that area was clear. The doctor told me they sometimes see some faint uptake in the carotid arteries like that, and since it was definitely gone on the 3rd, I didn't worry about it.

In sharp contrast to my scans on the 2nd and 3rd, which I fervently hoped would be clean, today, I was hoping that something would show up. We knew from my elevated Thyroglobulin that there was still some cancer somewhere in my body. If today's scan was negative, that would've been very unusual, and very bad. A negative scan today would mean that my cancer had somehow become undifferentiated, and was no longer taking up radioactive iodine. Since we use RAI to both monitor and treat thyroid cancer, that would've been dire news.

So I was quite relieved to see the three little dark spots along the cervical chain of lymph nodes in the right side of my neck, and not all that surprised, either. The doctor was pleased with the amount of uptake -- he was surprised that there was so much. Why didn't they show up on the first scans?, I wondered, but I'm not going to be torturing myself with that. If they had, I might have had to go for surgery... but they didn't (I saw the scans, I know!), and so we went with the RAI... and here's hoping it will do the trick.

I still think there is a very good chance that this last round of RAI will be the last treatment I'll ever need for my thyroid cancer, as long as I keep my TSH suppressed. I'm willing to do that. I go back for another scan in 6 months, and then we'll see.

bad, bad brain chemicals

I went for my scan this morning and was fairly agitated about it. My head was stuffed up and I was afraid I would have to mouth-breathe for the duration, or worse, that I'd sneeze and give myself a concussion in the process. (The scanner is placed very close over your head during these things, and it sits there for 10 minutes at a time.)

My NucMed doctor, Dr. L, wasn't there so his colleague Dr. S reviewed the scans with me. First: there were NO distant metastases! Well, so much for my "feelings", huh? I do know better than to put any stock in them when my brain is not right -- from being off-meds, from having a cold, from just feeling crummy. When you're slightly depressed, of course you're going to expect the worst, right? Bad, bad brain chemicals, making me see the world so negatively!

At least I know they're there, contributing to my bad moods. That helps.

There was still a ton of uptake in my neck. There were 3 major areas of uptake: one salivary gland, the right thyroid bed, and two tiny spots below that which we think were superstinial lymph nodes. Dr. S was quite blunt about how good a scan this was: "This is exactly what we want to see. There was a lot of uptake."

The only oddity was that salivary gland, because it was only on the one side -- but Dr. S that it is not unheard-of for there to be uneven uptake like that, and neither is it unheard-of for the salivary glands to show uptake. It doesn't mean there was cancer there. It's hard to know exactly what's going on in there without biopsying it, and there's really no reason to do that.

I'll go back again in 6 months for a follow-up scan -- still not sure what the prep for that is -- and hopefully we won't see anything. That would be the best possible outcome.

It's rather astonishing to me to have a (relatively) good medical report. Usually things don't go so well for me, I'm used to there being bizarre or unexpected results. It would be nice if this is the beginning of a new trend.

hopeless façade (rant)

I suppose I should be happy I don't look sick.

But I think sometimes, if I did look sick, then maybe I could catch a break?

I feel lousy. I have a cold, my neck is killing me, my biopsy sites are painful. But I still did all the usual running around today, did homework with the kids, made dinner, and got the kids upstairs at bedtime. DH had disappeared before bath time, did the baths, and then got sucked into the vortex that is the upstairs TiVO: apparently, there was a football game on tonight.

I was ticked when I went upstairs to do prayers that the humidifiers hadn't been filled yet. So we did prayers and then I got on that, while DH went back (momentarily) to his football game...

Got the kids into bed and then took my shower: "If you hear screams, it's just me taking off my bandages."
DH: Oh. Yeah.

He forgot.

They all forget... they forget I had surgery. They forget I HAVE CANCER. They even don't give a flip that I have a miserable cold, even when they see and hear the evidence (multiple nose-blowings per hour). Of course they forget about the biopsies, since they can't even see the bandages! How are they supposed to remember that I went under the knife, again, just yesterday? (Words cannot describe how much I hate, hate, hate being cut.)

I keep up this façade that I'm OK, so of course they believe it. They want to believe it. I want to believe it, too. The downside, of course, is that I'm not OK, and it's apparently never OK for me to be not-OK. It's not fair to them that I'm not OK, right? Can't expect them to pick up the slack or treat me any differently, right? obviously not with the kids, they are such pee-wees, they are more or less clueless...

Still. What would it take for DH -- I love him dearly, but sometimes his cluelessness hurts -- to ask, "How are you doing today?" I know, he relies on me to tell him if there is something he needs to know. I suppose I should tell him, he needs to ask me how I'm doing every so often, just so I know that he hasn't forgotten, you know, that I HAVE CANCER, and I frequently feel lousy as a result.

Ahhh -- I know what this is. Tomorrow morning is the whole body scan, we'll get to see the distant metastases. I'm sure they're there. Hope I'm wrong -- you'll be able to knock me over with a feather if I am, though. That would be a happy surprise! Hee. No, seriously: I ~know~ (feel?) that the news is going to be not-good, and this is me, freaking out, very quietly.

Time for bed. More tomorrow, I'm sure -- there will be news.

Addendum: tonight's web-crawl research topic: breast cancer risk is greatly increased (+42%) for pre-menopausal white women with thyroid cancer treated with RAI. Couldn't find anything on increased risk of melanoma, though, although apparently melanoma and differentiated thyCa are related, both being cancers of epitheliel cells. It will be at least a week before I hear from Dr. T's office the results of the biopsies, anyway. Best not to think about it.

No wonder my head wants to explode.