"they'll clean it out for you"

I had my ultrasound this morning and another fine needle aspiration (FNA) biopsy. Ultrasounds are fine, they don't hurt, but having an already lumpy-feeling throat get pressed on is always a little discomfiting. The u/s identified some things, I didn't ask how many or how big -- but one was big enough that they wanted to biopsy it.

So then the radiologist came in and gave me a local (ouch - a poke then a burn then stinging). Then she went for the node/mass and in spite of the local it still hurt exactly as much as every other un-anesthestized FNA I have had. She was extremely and sincerely apologetic, and since I didn't have any expectation of numbness, I wasn't upset anyway.

The best thing was she then took the slides and read them right away. It took about 20 minutes (I had a little nap, it was nice and quiet) and then she came in and told me she was seeing papillary cells. That's when she said, They'll go in and clean it out for you.

I said something like, so I need surgery, then? and she replied, You want surgery.

I know what she means, but I really don't want surgery. I'll do what I have to do, though.

Tomorrow morning I have an appointment with Dr. C and we will go over all my test results and I will hear his recommendations. I know I'll be going under the knife again, I just don't know when.

Now, we're going to the zoo!

cancer center, day 1 - EoP

End of Procedures, that is.

Got to bed staggeringly late, as I was too wound up too relax or sleep. Got up at 6AM, was over in the Head & Neck Dept by 6:30, where R & I waited, and waited, and waited. It seemed to take forever to call me, forever being approximately 45 minutes. 45 minutes is a lot of time, you know -- in which I could have been sleeping or doing something like getting some breakfast. But, that was not to be.

After paperwork, another more moderate period of waiting (that first time was the longest wait all day, all the others were maybe 10 minutes each), then to see a triage nurse who took vitals. I'm 170 cm tall, I'll have to convert that to inches later and figure out if I am as tall as I say I am! Then the triage nurse went over my record. Then I briefly met Dr. C's nurse. Then Dr C's intern examined me. Then the good dr himself came in and did the exam. Having to do the "stick your tongue out and say EEEE" test twice in the space of 15 minutes is icky. (It wouldn't be so bad if not for the little mirror they have shoved into the back of the throat.)

Dr. C says he will be astonished if the tests do not show abnormality. The question is, what will be the size and nature of anything they find. Those two factors will determine the basis for his recommendations. I am not a candidate for radiation treatment now. I am being evaluated for surgery. It is very unlikely they will identify anything that requires immediate surgery, but I told the doc I'd like to get it over with asap if it's necessary.

After Dr. C, over to the endocrine neoplasia specialist, Dr. W. Only before I met him, I was raked over the coals by his nurse, S. She had a strangely confrontational manner, and I found myself quite literally defending my presence at MDA ("This last biopsy says it wasn't cancer. What are you doing here?") and my health history ("What is this 'precancerous' thing you've written for your mother and grandmother?") Anyway, she did a very thorough exam herself, and gave me a breast exam tutorial. Then Dr. W came in and we discussed my Cytomel issues, and he told me it was OK to drop it back down to 5mcg/day. Hallelujah! I did push back at him a bit on the quality of the combined t4/t3 therapy studies as it is one of my pet issues. But I personally have no dog in that hunt now, I have no idea how I'd feel on just T4 and am willing to give it a try. I'm very happy to be knocking my T3 dosage down a bit and hope it will help my digestive system slow down.

After Dr. W (it's now about 11:30), I went over to get labs drawn: 6 tubes. Yikes. And I had a chest x-ray, too, my first ever.

Finally: LUNCH! We grabbed some sandwiches from the deli and ate outside in the warm sun. It's freezing in here!

After lunch, my head/neck CT, with contrast, and is it ever a strange feeling to get that rush of iodine heat. It's nice to be warm, though.

U/S tomorrow morning, with an FNA if necessary. And Dr. C says we'll have results from anything we do tomorrow pretty much immediately, which is cool. We'll discuss the CT scan results on Wednesday morning.

So: could be surgery, could be "wait and see." I will know more tomorrow, and should have a definitive plan on Wednesday.

KO'd

(posted on the Thyca Support Group)
I just got back from a follow-up ultrasound with my endo. My Tg at my last bloodwork a couple of weeks ago was 1.4, and she wasn't happy about that, so ordered the u/s. I've been noticing more trouble swallowing lately but was hoping it was scar tissue.

Apparently there are a lot of nodes and they are pretty sizeable. I have copies of the u/s films giving measurements for 5 different nodes along the right cervical chain. One was big enough that she decided to do an FNA on the spot.

So she's sending me to MD Anderson Cancer Center in Houston for evaluation and treatment. She said that at 3 months post RAI, there was still too much going on in there. I know that RAI continues to work for 6 months and sometimes even longer, but I didn't argue with her.

---

If anyone has any advice on retrieving rugs that have been pulled out from under you, I'd appreciate it. I was just starting to get into a groove here, getting a good routine going with the kids and arranging things so I could start swimming myself. I'm going to try to hang onto it as long as I can, but if I'm going to TX for God-only-knows-how-long, and having the most horrific surgery imaginable, it's going to be hard to keep it up.

This is so NOT FAIR to my family. Why should they have to put up with this? Why can't we just be normal?

All my (short-term) hopes are now dashed. I'm cycling between fear, sadness, and anger, having just hit the "pissed off" stage while typing that last paragraph. I have no idea how it's all going to work, or what the timing of anything will be. This is not exactly the kind of news you want to hear any time, but it totally sucks being put into the referral loop the day before a long weekend starts. That means literally nothing can happen for the next 3 days.

I can't do a thing until I hear from someone who tells me what I need to do. So I guess I will try not to obsess (ha) and relax while I can. Meanwhile:

AAAUUUUGGGGGHHHHHH!

radiation vacation, round 2

The scan was negative.

Negative.

Negative.

14 hours later, and I still can not believe it. That was so cool.

So, the scan stuff was done at like 9:45AM, but we needed my bloodwork from yesterday to figure out if there was anything at all to be done, and that was supposed to come over at 10:30, 11 -- but didn't come over until 12:30 or so.

Damn... Tg, which had been dropping steadily when my TSH was suppressed, and had last been measured at 1.9 or something like that, quadrupled under the Thyrogen stimulation to 8.8.

Damn.

The NucMed doctor, Dr. S, conferred with Dr. R at my endo's office, finally getting someone to speak with him at 2:30 after putting in for a treatment consultation call before 1. It was imperative the decision to treat be made asap, as the clock was ticking on my Thyrogen's viability. Dr. M never did call us, so Dr. R covered for her. (I'm thinking Dr. M better call me on Monday to check in with me or I will be a bit ticked.)

Dr. S's treatment plan: 100 mCi RAI, immediately.

So find myself being hit with the RAI hammer after all... it figures. But I am more than OK with it. I saw the scans and saw that there was NO uptake anywhere there had been uptake before. It was amazing. It was the best news: RAI works on my cancer. I am thrilled.

However, that Tg number means that there are clusters of cells around still producing Tg, even though they were too small to show up on the scan. We need to clean them out. This dosage of RAI should do that. There is a very good chance that I won't ever need treatment for this disease again.

Summer's official start is Monday, June 6, at 4:15PM, and three weeks from tomorrow, we're heading East!

100 miles, 6 stops, 3 sticks, one sore arm

Today: got up, took a shower, didn't have time to do my hair so I just let it dry. (It now resembles a tumbleweed.)

Took DS2 with me up to Phoenix, which was great because I could use the HOV lane and did not get stuck in traffic. At the endo's office, I got stuck 3 times: twice for the blood draw, and once with the Thyrogen shot. DS2 was great during the whole thing. I told him what was going to happen, and he said, "Oh! I'll just wait out here, then," and he sat on the floor in the hallway, just by the door. He could hear my voice but he didn't have to see anything. The doctor's office has some cool photos up that he spent his time looking at. It was only a few minutes, after all. The shot didn't hurt at the time, but man, does it hurt now. "Your arm may be sore," the tech said kindly. I just brushed it off, how bad could it be? Well, bad enough that there's about a 3 or 4 inch area around the injection site that's significantly hotter than the rest of my arm. The whole left arm, shoulder, and left side of my neck are very achey. Fortunately that didn't kick in until later. I should go look up whether ibuprofen would be OK for this pain. I can't think why it wouldn't be, but I won't take anything without checking it out first.

Got home and found I had inadvertently ignited yet another fire storm over on the forum; more about that in a different post. It's one thing to provoke an argument and then sit back and enjoy the fireworks -- and this not something I ever do on purpose, but sometimes it is funny to see how people react. But last night's post wasn't meant to be incendiary in the least, and yet somehow it turned out to be. So that sucked, and I flopped around trying to deal with that until it was time to go get DD.

Went and picked up DD at school, and then traipsed all of us to Trader Joe's because we had no bread or milk. Stopped at BK on the way home for the kiddos, but I had leftover beef stew, finished it off (sigh).

Came home, flopped around the forum hooha some more until it was time to go to the g/e doctor. Got there on time (1:30), but we didn't get called back until after 2PM, and then we had an inordinate wait in the room before the doctor came in. Then I had to go through my thyroid cancer history with him, and he actually had some suggestions for my rapid transit problem and wants to see me again in a month.

We left the doctor's and hit the road to pick up DS1, and got there just as the kids were being released. I had called and warned them I might be late so DS1 wouldn't worry, but I was glad I wasn't. I hate it when I'm late, even if they're expecting it.

Came home, tried to feed the kids a snack, but they were too excited (DD) or terrified (DS2) about their swimming lessons to want to eat much -- not to mention recovering from that stomach virus. Looked up the directions to the new swimming facility. Got everyone into their suits, and towels and goggles lined up, and got to the new swim place which was a bit crazy -- today was their first day in the new facility! All 3 kids did very well in their lessons, even though DS2 cried a lot. He cries, but he still does everything the teacher asks him to, it's pretty funny. On the way home he said, "I like that pool." We were all laughing, because of how cranky he was while he was in it! Oh, well. I think (hope) tomorrow will go more easily.

We got home a little before 6 but we weren't exactly in a hurry. Tomorrow we'll have to hustle because DD has to get to her kindergarden graduation ceremony as close to 5:30 as possible. At least tomorrow I won't have to buy DD a bathing cap, as I did today -- I knew I would have to, but I foolishly didn't think about it until it was time for her lesson. She's all set now. It was great to see how happy they all were.

Happy, and now exhausted. They were all drooping over their plates at dinner. We'll have to get them to bed asap!

Tomorrow I'm hoping they'll inject the other arm, unless the left one feels a lot better I don't want them sticking it again. As always, I'll just have to wait and see how it goes.

when all you have is a hammer...

...everything looks like a nail.

I understand that human nature dictates that we always think that our professional solution is the right one. It doesn't surprise me that my surgeon wants to operate, or that my NucMed doctor wants to give me another round of RAI.

But I have to weigh this factor in deciding what course of treatment I'll follow. And since I'm already in "off label" territory as far as Thyrogen treatment is concerned, I'm not exactly sure where I'm going to end up.

Today I called the NucMed department and got my schedule for my injections, tracer dose, and scan next week. The plan is to get injections on Tuesday and Wednesday, tracer dose Thursday, then the scan Friday.

That all sounds OK, but then the scheduler continued: We'll also treat you on Friday if the scan is positive.

Wait just a minute, there, Missy! What do you mean? First of all, treatment means going into isolation for at least 3 days, and it's not something I can just jump into.

Second, even if the scan is positive, will another round of RAI now be the best way to treat it? In my discussions with my endo, she talked about getting the WBS and then following up with CT or other scans to get good localizations on whatever is there, and then determining a course of treatment.

However, the Thyrogen is short-acting, and if I don't get treated Friday, I will have to go hypo (off thyroid meds for at least 4 weeks) before I could be treated, or I could try to request another round of Thyrogen but it's likely that the insurance company would deny it.

There's also the fact that Thyrogen isn't even commonly used for people who have not yet had a "clean" (that is, cancer-free) scan, and this is my first follow-up and we're about 100% sure that this scan is not going to be clean. This the "off label" usage I mentioned above.

But actually treating me while on Thyrogen stim is even further off-label! The Thyrogen Patient Information Kit (pdf) even says, Your thyroid hormone therapy must also be stopped if your tests show that you need 131I treatment.

I'm sure there are studies out there showing that it can be effective, and I know approval for this usage is something that the drug manufacturers are pursuing, but that doesn't mean I want to be a de facto uncompensated test case.

In addition, I'm not convinced that RAI is the way to go if it's in the lymph system, which is what my first WBS showed: multiple nodes in the neck and chest. At the time of that scan, I had just been nuked with 206 mCi of RAI, and the hope was that the radiation would clean out those nodes and anything else that might be lurking around. On examination at the beginning of May, my endo found at least 3 suspicious nodes in my neck.

Do I think I still have cancer in my nodes? You bet. Do I think the RAI can get it out of there? Honestly, I know there's a chance that it might, but I also know that historically, surgery (or ethanol ablation) is a much more effective method of eliminating cancerous nodes.

If I have RAI next Friday, they won't do anything else to me until the fall, at least 6 months out. On one hand, that could be a good thing as I could enjoy my summer. On the other hand, I have no confidence that further RAI is going to be all I need, so I'll just have surgery hanging over my head if they do the RAI now -- and the Thyrogen-stim RAI treatment still has me shaking my head. What to do, what to do?

No decisions can be made until after the scan, obviously. But I'm not going blindly into an off-label, less-than-effective treatment just because my NucMed doctor has a hammer and sees my thyca as a nail.

warning: re-entering Cancer Land

I saw my endo yesterday morning. I had a set of expectations that turned out to be completely wrong.

I expected that I would have to go off my T4 meds for 4 weeks, using extra T3 for 2 weeks, and then going with nothing for the last 2; then I'd get the Thyrogen shots and the scan.

Wrong! I get to stay on the T3 and the T4 the whole time. That's cool. I get to have the shots & scan as soon as they get the Thyrogen from their supplier. That sounds vaguely illegal, but it's not, although there is some run-around involved.

So, I had been thinking I had a good 2 weeks at least before I had to go back on the LID (low iodine diet). Wrong! That threw a wrench into our Mother's Day plans. Mimi's Cafe uses iodized salt, and that's where we were going Saturday evening. Flancer's, where we're planning lunch on Sunday doesn't, so that's still a go. YAY! I'm thinking I will give Claim Jumper a call and see what they say... I like it there.

Aside from these piddly concerns about eating and dinners out, my endo flatly stated that it is "likely" that I will need more treatment. Probably surgery, but also possibly RAI, in which case I would have to withdraw from meds for 4 weeks.

So, the plan is -- wait until the Thyrogen arrives, then get shots 3 consecutive days. Then get scanned. When it comes back positive, I'll probably go for another scan to localize the cancer so the surgeon can go in there and get it out. Ideally it will come back negative and I'll just take my summer vacation as we planned -- but the odds are vanishingly small that will happen. The dr felt a few little lumps in my neck she thought could be nodes.

I'm doing OK with this so far. In the back of my mind, I expected it. Doesn't mean I have to like it, but I will do what I have to do, just get through this and hope it will be the end of it.

One upshot of all this is that there will be a lot more cancer stuff around here in the forseeable future.

I have to say, I am thrilled to still be on my meds because in spite of the pending bad news, I still feel good, and I can still do things, and that is tremendously helpful.

typical question

Here is a post on the Thyroid Cancer Support forum I participate in:
I've been trying to read as much info as possible, but I've got a quick question. If someone who's undergone surgery to remove thyroid cancer finds out some cancer has spread to the windpipe, is that considered "Distant Mestatis" (sp?)

It may seem weird wondering if your metastases qualifies as "distant" or not. But as you can see, it makes a pretty big difference.

What is weird is that our doctors are strangely remiss in giving us this information.

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.

outside reality

Today was one of those surreal days. I suppose I will have a few of these, at least until I get used to the idea of having cancer.

I think that the big CANCER theme will be hogging a lot of my attention until I have a better idea of what's going on with it. I mean, right now I just think I have to wait until my TSH hits 40 and then it's off to RAI-land, where apparently I will be radioactive, and therefore have to avoid other people lest their perfectly normal thyroids uptake some nasty radioactive iodine and perish. Can't let that happen; sounds like at least 5-7 days wherein I will have to stay away from the children, and anything else I don't want to dispose of in a radiation hazard bag.

Needless to say, I won't be visiting any airports or security-sensitive sites in the month or so following the RAI, whenever that happens to be.

I did a little more reading up on thyroid cancers and treatments. I am extremely un-thrilled about having to eat a low iodine diet; I rely heavily on yogurt and cheese as dietary staples. The rest I can deal with quite easily (although eggs will be a bit hard to lose, too.) But seriously: no butter? C'mon, dudes! A girl's gotta live, right? How much iodine can there be in butter?

Well, once again, I have to not stress about that until I know exactly what I'm facing. Although if I do have to go into essentially solitary confinement, I'll need to make some serious arrangements beforehand. That's going to suck.

I wonder about my retainer. I wonder if I can get a temporary bite guard made to wear while I'm contaminated? Oh, that is so going to suck.

Today was a much better day; I didn't take any vicodin, the ibuprofen is doing just fine. Showering and washing my mop of hair was an interesting experience, given that I can't really move my head very much. I slept pretty well last night and had a nap this afternoon, too. My neck hurts but swallowing and talking are both going fine. I'd say almost normal, but they are not quite there -- but still doing really well.

My biggest issues are my shoulders are tension city from holding my head and neck in roughly the same position nearly constantly; my butt is tired from so much sitting and lying on my back; and my legs are itchy. The itchy thing I know is only going to get worse, that's one of my hypo things. Whee. The rest will get better with time. I'm surprised because my incision isn't really bothering me all that much. I think my instinct regarding the less-invasive nature of this surgery was somewhat correct. There was no mucking around in my abdominal cavity. Even though there was a lot of digging around in the front of my neck (!!!), that's still a very small, localised area. The rest of me feels, well, fine -- except for the little irritations mentioned above. Oh, every so often the tape over the incision starts to itch, too, and that's going to get worse before it gets better, but I'll deal with it.

I'm up around 130 pounds, post-surgery; that's about +5. I was on the IV all day Thursday right into Friday morning, probably 24 hours straight, definitely a record for me. Haven't eaten any junk but did eat well today. I do wonder what's going to happen with my weight, but that's another for the "we'll see" column.

It was cool out today, which kind of ticked me off since I would've liked to eat outside but it was too cold for me. Figures, huh? DH took the kids out to play and then out for lunch. I'm not such good company since I can't talk much and basically end up staring into space for long stretches of time. Hey, considering I had major surgery day before yesterday, I'm not doing too badly.

I think it's weird that I have cancer. DH isn't taking it too badly, "Well, there's cancer and then there's cancer, it's not like this is a really bad kind." Well, no, but dude? I have cancer, I think I'm allowed to be a little freaked out about it. I haven't been, yet, but I'm not sure I understand all the repercussions. Like, are they sure it was only papillary? Papillary cancers don't usually grow fast, but this one seemed to be. Also, what stage was it? There was some serious lymph node involvement. That would indicate a later stage to me, but what do I know about this? Not much, that's for sure. If it was only papillary cancer, that's very cool, and even if there are distant metastaces (sp?) they are very treatable. The problem will be if it isn't just papillary, the others are bit more hairy. Eh.

Monday I'll be on the phone with all the doctors. I'm going to avoid driving until Wednesday if I can... I mean, I could if I had to before then, but the head-turning thing is not easy.

This is just weird. It's kind of like a vacation but not really. I don't want to be on vacation, anyway. I feel completely fine until I forget and move my head a bad way and then I am reminded: hey, you just had surgery, and by the way, you have cancer.

I will be glad when the neck is healed and the shock of the news has worn off. I'm not exactly obsessing over it but it does keep presenting itself. The biggest reaction I can muster so far is, "So what?" For the short term, anyway, I just have to get this incision healed and wait until the next cycle of treatment.

"I have a bad feeling about this."

That Star Wars quote has been rattling around in my brain for a few days now. I just looked it up, and it really does show up in each of the movies (so far), and I think it even showed up in the Clone Wars shorties on Cartoon Network. (Those rocked, btw, so if you haven't seen them and you ever get a chance, you should watch them, and there are new eps coming in March of 2005. (yay!) )

This would be either 1) my upcoming surgery or 2) the aftermath of it.

Yes, I am expecting really bad things. As I said, I have a bad feeling about this, and unfortunately, my track record with this kind of bad feeling is actually pretty good.

So, while I'm not convinced I'm going to die on the table, I've a horridly sure sense that I don't have too much time left here.

However, I realize that I have some very, very bad brain chemicals or chemical imbalances going on these days (see previous post).

Perversely, this gives me hope. Maybe -- probably, in fact, almost assuredly -- my bad feelings spring not from some awesome intuitive power I have, but from a real, treatable, physically-caused depression.

I think it's reasonable to be afraid at this point. I'm not worried that much about the surgery in and of itself; I'm concerned about what they'll find. I expect my recovery to be either fairly easy and rapid (no or very little cancer, no RAI), or long, drawn out, and very difficult (cancer+ RAI= very hypo for a month).

I think if I need RAI, I will not be able to take care of the kids properly. Heck, I still have the stupid gland and already I'm a basket case. That's the fear.

One of them, anyway. The other big fear is that the depression will deepen to the point where I won't be able to separate real bad feelings from bad feelings caused by metabolic imbalance. I've been in that pit of despair before, and I never, never want to go back, but I'm not sure I'll have much choice.

I don't want to be afraid, but I can't help it. Whatever happens, I'll deal with it, of course. Unless I'm dead, in which case it will be out of my hands.
(Part of me can't believe I just wrote that, the rest of me is saying "shut up, it's what you thought, quit censoring yourself.")

See what I'm dealing with here? I'm going to bed now...

down day

N xxumulRION OD

Oh, that looks kind of cool, huh? That's what "An accumulation of" looks like when your hands are shifted one key to the left and you type without looking at either the screen or the keyboard. (I can't see the keyboard very well, actually, since it is in darkness and the monitor's brightness is keeping my pupils contracted.)

Anyways:
An accumulation of stuff today has left me less than chipper than I have been the past few days. First thing, after dropping DS2 off at school this morning, I stopped by my hair salon to schedule an appointment to have my unruly mane brought under control, only to find that my all-time-favorite stylist has moved on to parts unknown. Now I have to find someone else who understands my hair! This is not as easy as it sounds. My hair is really (really) unbelievably thick. There's tons of it. And I want to keep growing it out, which means thinning and texturizing and all sorts of scissor work so I don't look like a mushroom head... Elizabeth understood this perfectly. I like her so much that I even let her color my hair -- first time ever! And now she's gone forever , unless I serendipitously come across her somewhere else. Bummer.

I did some more research on my upcoming operation, and the reality of it is starting to sink in. It is not a dangerous operation, and the prognosis is certainly good. But it is a complicated operation, and has to be treated carefully. I will be in the hospital at least one night so my blood calcium levels can be monitored and they can be assured that I don't start bleeding out somewhere in my neck. A lot depends on what they find when they open me up (and I'm still having a bad feeling about that), whether they have to do a total thyroidectomy or just the lobectomy and the isthmusectomy (such an improbable word). Will I be able to eat? Will my voice be affected? How soon until I can drive? It will be a while, at least a week, because you have limited head/neck mobility following the surgery.

All of these facts more or less crashed down on me today, so I called my surgeon's office to check on the scheduling (still not final, but definitely the week of the 18th), so then I checked airline flights and talked to my mom and got her booked to come out on Wed the 20th. She's booked to go home Nov 10th, but we can change that for $100 -- even with the change fee, the ticket was way cheaper than buying a fully refundable ticket. I admit I feel better knowing my mom will be here to take care of me. She's really good at it, and she has been around for all of my major medical experiences. It is a huge comfort to me to know that she is with my kids whenever I'm going through something like this.

My fuse was way too short today with the kids (much like DS2's, but he has the excuse of being 3...) but the day ended well with story time and encouraging DD to read some words on her own; she did fine as I knew she would. She is currently obsessed with making paper lanterns, and even though it's annoying it's also charming, and I'm glad I showed her how to do it. At least these days I can look up out of my misery pit long enough to do positive things with the kids from time to time. Certainly not as much or as often as I would like to, but it's way better than nothing.

a hard time

I went to Mass this afternoon with DS1, he's my buddy. What I appreciate about him is that he knows there is no point in arguing with me, so he doesn't -- about things like eating vegetables, brushing teeth, going to bed, and now, going to Mass. We've told him that doing all these things will help him to grow up into the best possible person, and he believes us. I hope and pray that his little sister and brother come to the same place when they are as old as he is now. The eat-your-vegetables argument was old 2 years ago.

So no, my hard time today was not with getting DS1 to go to Mass with me. It was wholly within myself, at Mass, that I struggled, because my voice was all over the place: I couldn't sing. Some hymns I sang in my chest voice but my range is so limited there, I kept switching back to head voice but my voice kept dropping out and skipping and being generally unwieldy. The closing hymn was "Hail, Holy Queen" (DS1: "I've heard this one millions of times," hee! -- yes, he sang, too) and since that is neither too high nor too low I managed to squeak through it.

I wonder how my singing will be after the surgery. I have never been a really good singer, but I can sing well enough to hear when I go offkey so I can either shut up or get back on... and I love to sing, especially hymns. When I pray without music, my mind often wanders far afield. When I sing my prayers, the discipline required to stay on pitch helps me keep my mind where it needs to be, on the hymn. Maybe with more practice I won't need that extra focus, but I don't think it's so bad too use music as my crutch. But if I can't sing -- physically can't sing, as happened today, when many times nothing came out -- I don't know. Well, yes, I do know: it will make me sad.

It's perverse, really, because I know my singing has been improved by my thyroid nodule, since it changed the dynamics in my throat space. But now the nodule is impinging on everything around it, and what was once a marginal plus is now a definite negative. It has to go, and I'm sure whatever benefit my weak and reedy voice got from it will go, too. Plus, scar tissue! A entire new voice landscape to explore.

I've been off my Vitamin E for several days now, nor have I had any kind of NSAID or pain killer. If the surgeon on Monday says, "how about tomorrow?" I'll be good to go. I just want it to be over with.

the big "C"... probably

The first thing my endocrinologist said to me this morning was, "It's going to have to come out."

The lab report on the FNA was not horrible. There was no definitive diagnosis of cancer, but:" a rare pseudonuclear inclusion is identified" and that was the deciding factor for my doctor. Only 2 of the 6 samples had any cells, which is one of the problems with FNA. The endo suspects it is papillary cancer in the very early stages.

The treatment is surgical removal of the thyroid, followed by RAI depending on how much cancer is found. She said I can expect about one month of being really hypo, because they have to kill all the thyroid -- after that, I'll go back on thyroid hormones and will go through the fun process of tinkering with doses to get me back to some "optimal" level.

I have an appointment with the surgeon for Monday morning, and we'll see how it goes from there.

Now that this is real, there is a sense of almost-relief. I am dreading going through the procedure and its aftermath, but I'm hopeful that I'll be feeling better by the holidays. December 1 is my last scheduled appointment with my dermatologist, too, so by mid-December, I should be all patched up and back to "normal" -- done with medical stuff for a good long time. Here's hoping.

pincushion

Went up this morning for my thyroid ultrasound and FNA. I knew it was going to be bad. The pain is not so much in the needle sticks as it is afterwards, because when they put the needle in there, they kind of wiggle it around a little bit to get a tissue sample, you know? So it still hurts now, hours later, and it will probably continue to bother me for a good part of the weekend.

The endo reviewed the u/s and seems pretty sure that at least the side with the nodule will have to come out. See, I've had the nodule for a few years now and all of a sudden it is much bigger (not just me psyching myself out), plus has different characteristics... she doesn't think it should stay. If the biopsy shows cancer, they'll most likely take both lobes of the thyroid, otherwise they'll just take the half.

So she did about 6 sticks in the throat, but then I needed 3 more sticks (both arms, right hand) before they could find a vein that would give blood for the lab tests... I'm just feeling battered right now.

DH and I made plans today to see the Patriots on Sunday. The high temp is only supposed to be 88. Here's hoping -- I really need a good day out!

running the cancer tests gauntlet

This week I got my mammogram. Next week I see my dermatologist for a "mole check", and the week after that is my thyroid scan and FNA (fine needle aspiration biopsy).

IOW, we're doing the comprehensive cancer-sweep, and I won't have a clean bill of health until close to the end of the month, or possibly later, the way all these things typically work.

It doesn't seem like it should be much, but it is psychologicly draining going through all this. The tests themselves are not so bad, with the exception of the FNA ("Here, let me jab this big needle into your throat, repeatedly!"); it's more the waiting around for the test results that gets to me.

Since I'm hyper-observant about my state of health, I know that if I actually do have anything, it will be in the nascent stages and most likely easily dealt with. Unfortunately I have this sense that, since I've already lost 2 internal organs, I'm going to continue to lose non-essential ones until I run out. That means I'm up for appendicitis any time now, and that eventually my thyroid will go crazy and I'll have to have a thyroidectomy, too. The same voice that once spoke in my head telling me it would be so much easier to deal with things when "they" (my breasts) are gone continues to murmur now and then to enjoy 'em while I have 'em.

If I were a normal person, I'd brush off that last as a bit of a (health)paranoid delusion, except it was that same voice, that same knowing/feeling that I heard the very last time I stocked up on menstrual supplies (it was a very steep sale and I bought a lot of my favorite stuff, which I later packed up and sent off to my sister and nieces): "I don't know why I'm buying all this, I'll never use it up." Now, why would a healthy 40-year-old woman -- finally having regular menstrual cycles after years and years of irregularity -- ever have occasion to think such a thing? Seriously, you can never have enough of that stuff around; 40 is nowhere close to menopause. I just figured some part of me knew my uterus was not destined to last my entire life's journey, because it checked out only a few months later.

One of my hallmarks of depression is the inability to get to bed at anything close to a decent hour. Lately I've been in that pattern again, obsessively reading everything I could on the election and politics. It has been a terrific distraction. See, I do not think that my recent late nights are the result of depression (on the contrary, I feel more grounded and content than I can remember feeling), they are more the result of fear: when you know you're going to die, you don't want to waste time sleeping.

I don't (human brain) think I'm going to die any time soon. But I realize I am (lizard brain) afraid of hearing that I'm going to die a lot sooner than I am hoping for. Here's hoping that this airing of the topic will act as a pressure valve of sorts. The whole thing is rather absurd and while this discussion is somewhat simplified, it does help to just get it all out there.