good news, bad news?

My ENT called this afternoon. He is my favorite doctor of all time, which is saying something since my OB saw me through three pregnancies and is completely wonderful, too.

Anyway, Dr. O called to tell me that my hearing test came back perfect, which is the good news.

The bad news is that he wants to see me to follow-up on the results of the neck ultrasound I had a few weeks ago. My endocrinologist was OK with that lymph node it identified in my left neck, but he wants to take a look. I respect his opinion, so I made an appointment and will be seeing him next Wednesday.

This isn't really bad news, and I'm trying not to get worked up about it. He's just being thorough, after all. My TSH was so low (0.03) and my Tg (thyroglobulin, my tumor marker) has dropped from 0.28 to 0.23, so, nothing to worry about, right? (I admit, I would be much happier if it would come back truly undetectable, so far that's not happening.)

Since I'm in here talking about health-related issues, I've got a trifecta of freakish injuries running: 1) a slight case of tendonitis in my left Achilles that's going on its fourth week now 2) bruised index and middle fingers on my right hand that I have no memory of injuring; I must have smacked something really hard and 3) muscle strain in my right neck/shoulder I think from the combination of too much phone time and falling asleep in an awkward position on the couch. When I wake up in the morning I can't walk because my left leg is so tensed up, and my right hand is frozen. The headaches that descend when the ibuprofen wears off are so reminiscent of those I had post-op after my neck dissection it's depressing. Taking the aforementioned ibuprofen and judicious stretching gets everything moving again, but this has been a rough couple of weeks.

diagnosis pending

I saw Dr. G, my gastroenterologist, about the reflux problem. Here's the plan:

1. Switched my meds from twice-daily Prilosec to twice-daily Zegerid, which has twice the dosage of omeprazole plus bicarbonate of soda. So far the only thing that has helped me actually feel better is the every-4-hours Mylanta, but that had other side effects.

2. Scheduled an EDG (upper endoscopy, I've had one before) for the end of this month; he's concerned about the swallowing problems. (Me, too.) He doesn't think I have a hiatal hernia, though, because the last EDG didn't show any herniation. I'm thinking anything can happen with the way things work for me, so I won't be suprised either way.

3. I will be scheduled for an emptying study, to see if my problem is caused by food leaving my stomach too slowly (gastroparesis). Considering I've had a "rapid transit" problem for years now (ameliorated somewhat by the cholestyramine I've been taking for the past year or so), the idea that food is transitting any part of my digestive system too slowly is pretty funny. [Interesting aside: the gastroparesis link above says that cholinergic drugs can cause it...cholestyramine is a cholinergic drug.]

4. Back to his office in mid-December for the recap on everything, to find out what is to be done. I hope the Zegerid works better than it has today, otherwise it's going to be a very long month.

(Meanwhile, I'm having another video stroboscopy study the week before, so we'll be able to get a good look at how my vocal folds are functioning, and see how well they're holding up to the constant acid washing.)

I tried Protonix once before and it made me very sick, that's why I'm hoping I'm broken in a way that's physically fixable. This is ridiculous, here I am wanting to go under the knife again! Sheesh.

fix me

I'm broken again. Finally got a chance to go see Dr. O, my ENT (fabulous, I recommend him to everyone.) As usual, he listens to what I have to say, does a thorough examination, and then explains what's happening, and what to do about it.

I have a couple of things going on. First of all, my turbinates are causing my chronic head congestion and post-nasal drip. Using Nasonex is helping some, but it's a stopgap, and I still end up with that weird feeling of pressure inside my ears, a lot. Not to mention the never-ending post-nasal drip. I'm scheduled for turbinate reduction surgery in mid-December; he'll fix my deviated septum while he's in there.

The second issue is my chronic sore throat and trouble swallowing. I thought that these were two separate things, the first caused by the damned post-nasal drip, the second a result of post-surgical scarring.

Nope, and nope. I wrote about this once before: what do I know?; just over two years ago. It's amazing how easy it is to forget stuff. The sore throat problem has little to do with the PND, although it may be exacerbating it. Both problems are caused by acid reflux; my esophagus is so irritated that it has become swollen and inflamed, which of course makes it harder to swallow.

I've been taking Prilosec for a couple of years now; somewhere along the line the dose was doubled. I never really thought about the fact that it wasn't working until Dr. O pointed it out -- I'm managing so many poorly functioning physical systems that the acid stomach wasn't even registering. But as soon as the doctor said "reflux," I realized that the acid problem has been pretty awful, and I can't say for how long. For example, I feel queasy if my stomach is empty, particularly in the morning. All of the other reflux symptoms are there in spades, as well. How could I just ignore them for so long?

You know: busy, life, all that.

Dr. O suggested I change the way I'm taking the meds, switching me from one in the morning & one in the evening to both pills, a half hour before dinner, to give me more acid-reducing power overnight when production really cranks up.

Since that didn't help, I called Dr. G, my gastroenterologist, and basically said: "Help!" I'm seeing him Monday, in the meantime, his conveyed through his nurse that I'm to take 2 tablespoons of Mylanta every four hours. (Ick) It's helping, though. But I don't want to take it before I go to bed, because that's when I take my iron, and I'm pretty sure the calcium and magnesium will screw up the iron absorption. I think I'll take a ranitidine tonight, because already I can feel the burning in there, and it's not going to get better on its own.

Perversely, I'm hoping I have a hiatal hernia, or some physical defect that can be fixed (please please please), even if it means going under the knife again. I can't stand having these dysfunctional systems that are sort-of, kind-of treated via medication. It sucks, and I take too many pills as it is.

Today in the teacher's lounge, at lunch, when I shook my noon supplements out of their box, two teachers gasped: Is that every day? Yes, I joked -- better living through chemistry. Then the 10-second run-down on what everything is ("These two are for my arthritis, this is calcium I need to take because of my thyroid thing, this is Vit D to help the calcium metabolise properly, these are digestive enzymes...) Even so, I do a passable imitation of a healthy person.

Back to fixing me... I'm also scheduled for another video stroboscopy, wherein they film what's going on in the throat. I'm curious to see how it looks. I'm thinking Dr. G will schedule something to fix me. I'm miserable, and we've already met our health insurance deductibles for the year. Now would be a good time to get going on making me better.

[Inevitably: what am I doing that's causing all this? Don't know, don't even know if that's a valid question. Aftermath of the surgery is one aspect of it, but how big a factor, I can't say. More likely it's just genetic; I'm still hoping it's something that can be fixed instead of managed.

haven't done this in a while...

Can you spot the scar?

My neck dissection surgery was just over two years ago. I haven't needed any treatment for my thyroid cancer since then.

In case anyone is wondering how I'm feeling about all this: YAY!

well!

The lab results came in the mail today -- sample date, 8/3/2007; Tg: 1.1.

YAY!

well --

I called the endo's office today, and the doctor's assistant read me my thyroglobulin (Tg) results. Supposedly, my Tg, with TSH elevated all the way to 159, was only 1.1. I'm having a hard time believing that, so I asked her to please mail me a copy for my records. Last year in Houston, my Tg elevated to about 4.5, which is quite a difference from 1.1 -- and I haven't had any treatment at all since then, except of course for my daily dose of thyroid medication. The stupid/stubborn part of me is thinking, "That can't be right."

But I guess I can believe it, because the endo didn't want to speak to me or schedule an appointment -- so I'm tentatively believing that, for all intents and purposes, I'm CURED.

I won't really believe it until I hold the lab results in my own hands, though.

half-measured

I had my follow-up appointment today, and it was more or less a waste of time, because my thyroglobulin test results are not yet back from Dr. Spencer's lab out at USC. I can call and get those results on the 14th. Yay.

I did get copies of all my other test results, though -- the ultrasound, the whole body scan, and the before-and-after TSH tests. After the two Thyrogen shots, my TSH went up to an astonishing 159.

It's no wonder I'm still feeling pretty whacked out. I can't imagine how long it's going to take to bring that down to the 0.20-0.10 that it's supposed to be.

Now what? In the near term, nothing, as long as my high-TSH thyroglobulin comes back less than, say, 10. (Last year, it was around 4.5.) That means I can cancel my end-of-month appointments in Houston, too; next up will be an ultrasound in January.

If the Tg does come back elevated, I'll go for a PET/CT scan, and we'll see what happens from there. I'll be speechless if it's elevated, though. I am so done with this disease, and the stress of these follow-ups.

regarding salivary gland issues

From time to time (like today!) I get an email or a comment asking for good information about salivary gland damage from RAI, RadioActive Iodine treatment for thyroid cancer.

Unfortunately, post-RAI salivary issues are a lot more common than your doctor may let on. For the most part, the first flare up is (more) severe. Some people have one incidence, post-treatment, but many continue to experience periodic flare-ups, some triggered by eating certain foods (sour, spicy), or sometimes nothing at all.

If you're looking for some good introductory material about this condition, here is an article on ThyCa.org.

Here is the link to the article on MedScape about radiation damage to salivary glands. This is a much more technical article targeted at a medical professionals, but it also includes an illustration of a very beneficial massage technique (figure 7). (MedScape may require free registration.)

Last but not least, I recommend NSAIDs such as ibuprofen (Motrin, Advil) or naproxen sodium (Aleve) as both a preventative immediately after dosing with RAI and for the next 2 days, and as a treatment whenever the salivaries swell up and become painful.

An aside: I had trouble recently distinguishing jaw pain (TMJ/TMD) from salivary gland issues. Some ways to distinguish between the two: salivary gland issues will not cause clicking or popping when you open and close your mouth, as far as I know, and repositioning your jaw or opening or closing your mouth will not change the type of pain/pressure you experience from salivary glands. If you're hearing pops or your jaw joints hurt when you open or close your mouth, you're most likely suffering from TMD. Unfortunately, it's entirely possible to have both issues at the same time!

don't say it, don't even think it: what not to say to your thyca patient

Medblogger Life (and death) posts about a thyroid cancer patient, and begins:

"If I had to pick a cancer to have, I'd pick thyroid cancer."
That's what I tell my patients...

My reply:
Speaking as a thyroid cancer patient, I can tell you that I cringe every time I hear that "If I had to pick a cancer..." line. No one would ever, ever choose cancer, and your saying so is patronizing and annoying. Your patients may not appear to be annoyed when you say this, but that's because they're still in shock from hearing the diagnosis of cancer, and they've still got that word, CANCER, echoing in their brains and they're trying to figure out what's going to happen them, etc. Take my word for it, they'll be irritated later.

Thyroid cancer is not the cancer you'd choose, and it's not a good cancer, either. It is often a manageable, treatable cancer, and the management and treatment options are the good things, not the cancer.

You are correct in that, for the vast majority of patients, thyroid cancer is a die with cancer rather than a die from cancer, but it's still cancer, and it is a cancer that we patients must confront every single day of our lives, post-thyroidectomy. Can you name another cancer that forces its patients to take suppressive chemotherapy every day for the rest of their lives, or they'll die? Our thyroid meds do double duty, providing us the necessary thyroid hormones our absent thyroids would produce, and also keeping our thyroid stimulating hormone very, very low to help prevent the growth of any remaining cancer cells. We have to take this medication every day without fail; we cannot survive without our thyroid hormone supplements. And if our dosage is incorrect or we take it incorrectly, we may face a recurrence that could otherwise have been avoided.

That's not to say that thyroid cancer patients are doomed to a miserable existence. I'm 27 months from diagnosis, and 15 months from my second surgery, which involved four neck dissection procedures. I'd say it took about six to eight months after my diagnosis to get my medication levels correct, and that was rough. Having to go on the low iodine diet prior to follow-up scans is tedious and, because it's easy to make a mistake that can invalidate the scan, nerve-wracking. Day-to-day, I have an active, full life with family and friends and work. But I still have cancer, and my tumor markers are hovering in a gray area that means I have to go for follow-up every few months, so I never get to not-think about it for very long. And even on days when I don't have to think about, I still have to take those meds.

My 8-year-old daughter asked me when I could stop taking my meds. Her experience with medication is limited to analgesics and the occasional antibiotic for strep throat or an ear infection, all of which are limited in time. I told her, "When I'm dead," and she was startled. I had to explain to her that I have to take them every day, for the rest of my life.

I'm OK with it now, but the idea does require some mental adjustment. I urge you not to continue to downplay the significant impact that a thyroid cancer diagnosis will have on your patients' lives.

I also want to apologize if I'm giving the impression that I think you don't care, because it's obvious that you do care, and care a lot. I'm just trying to counsel you against committing the most frequent insult to thyroid cancer patients' intelligence.

progress report: 3 months post-op

Neck dissection scar at 3 months post-op
Compare to 3-week photo

Overall, I'm doing very well. The scar is not healing uniformly, and it is somewhat annoying (if predictable) that the part that is least visible (around the right side of my neck, usually covered by my hair) is healing best, and the part that is most visible (center-left) still looks like a bright red gash. OK, slightly less bright than a fresh gash, but still. Mom commented this morning: Part of your scar looks irritated, but I think she only noticed it because I've been wearing turtlenecks a lot recently, so she hasn't seen it in a while.

Moving to the more important aspects of recovery (looks aren't everything, after all), I'm happy to report that my strength and mobility are both doing very well, although I have lost strength since I quit doing my physical therapy. I am a slug these days, and it's not helping my overall fitness, of which I have none. I'm working on getting up the motivation to get back to the Y -- which also requires coordinating with my mom. It will happen.

The surface-level nerve damage is slowly, slowly healing. I note that normal sensation has returned around the right margin of the affected area, and that my jaw line is entirely free of numbness now, although it is sore and tender underneath the surface. My ear, too, finally feels normal now. There is still an area of numbness starting at the midline under my chin, extending about 3-4 inches to the right, and all the way down to just above the incision scar.

I continue to massage the scar once or twice daily, and to massage the affected area and my right neck in general; there was a lot of dissection in there, and it helps to get things loosened up in there. Even gentle massage is very uncomfortable. I frequently feel stabbing pains in and around the affected area, as well as the unpleasant tingly feelings and electric shock-like feelings. All of these are good, I know, because that means that nerve function is returning. But it still hurts and there isn't much I can do about it, except wait for it to go away. The one good thing about these random sensations is that they seldom last more than 5 or 10 minutes.

I have a big lump in my right neck which of course freaks me out: I'm sure it's a lymph node (they were not nearly all removed, after all). I'm not sure it's cancer. DH was reassuring: Maybe you just have a little cold, he said. It's true there's all sorts of respiratory-type junk floating around this house, so I could, indeed have a cold. I have been having more trouble swallowing lately, though... but that could also be from having a post-nasal drip.

I've noticed that the deep-breath/out of breath feeling I was having, which was related to aspirating stomach acid (ew), has not been bothering me lately at all, so perhaps the Prilosec is actually working. I need to follow-up with my ENT to see if I should be getting speech therapy for my slightly paralyzed vocal folds -- my voice control seems better lately, but maybe that's just because the kids are back in school and so I'm not having to talk so much or raise my voice much.

My RA is kicking my butt these days, literally -- major problems with the tailbone on waking, as well as hands, hips, feet, and shoulders. This is definitely the worst I can remember feeling on waking, ever: the pain is bad enough to get whimpers out of me even though I hate it when I do that, and I try my damnedest not to squeak just because it hurts so much. (I would describe these sounds as sighs that suddenly betray me and turn into squeaky almost-sobs; it sucks.) There are any number of reasons I could be feeling so crummy, including changes in my thyroid meds and lack of exercise (biggest culprit, I think), but one thing I have been good about is going to bed at a decent hour. I'm disappointed that's not helping more. Fortunately I'm off to the rheumatologist in early February; we'll see what she has to say.

I hate writing these things because they come out sounding so negative when really, things are going pretty well. The kids are all healthy for once, there's nothing stressful hanging over my head, and Life is more or less on cruise control so we can, you know, enjoy the scenery.

I'm itching to make our summer plans but we've decided to wait until I get back from Houston. I'll feel a lot better about things if that node in my neck goes away before I get there.

perfect

It makes me nervous when my medical providers use that word, perfect, to describe some aspect of my condition.

I recall that the surgeon who performed my thyroidectomy used it sometime after my surgery (the details are murky.) The scar did heal beautifully, but my post-op condition was far from perfect, seeing as how I was still quite riddled with cancer at that point -- we just didn't know how much was still in there.

Last week I had blood drawn to check my TSH and thyroid hormone levels, along with thyroglobulin (Tg) and Tg antibodies. On our return yesterday, I found a letter from my endo in Houston with the test results: Your labs are perfect!

Hmmmm. I haven't been feeling very well, but maybe that's the mono.

I looked at my numbers: TSH is 0.06 -- very good, and not all that different from where it was before (0.02) -- again, no margin of error is reported, so I can't assess the accuracy of these numbers, but hey, it's below 0.10 like it's supposed to be, so OK. T4 and T3 are also right where they're supposed to be for thyroid cancer patients. (So why am I feeling like crap? Oh, right -- it could be mono.)

The most important number, though: Tg was reported as <0.09. If I am interpreting that correctly, that means that Tg was undetectable. Tg is only produced by thyroid or thyroid cancer cells, and so I shouldn't have any. Before my thyroidectomy, it was up in the thousands; before my trip to Houston, it was less than 2, but still detectable. Now, for the first time ever, it was undetectable. That means I either have NO CANCER or whatever cancer islets remain are so tiny that the amount of Tg they are secreting is too small to be detected.

I'm going with the first explanation. I wonder, how long does this have to last before I can officially say I'm in remission?

mouthful of salt

My parotid salivary glands are acting up something fierce lately. My face is mildly mumped, not so that anyone else can tell that they're swollen, but I can see it. They don't feel very good, either, so massage, while beneficial, isn't at the top of my list at the moment.

The worst thing is that I keep getting streams of salt water instead of normal saliva. I'm chewing a lot of gum but you know, salty wintergreen or salty peppermint just aren't doing it for me. I use my Biotene stuff religiously, too.

I wish I knew what triggered this behavior, so I could avoid it or at least expect it. I also wish I knew how long it's going to last. It has been going on for about a week now, and it's affecting my eating and desire to cook, too. When everything tastes salty, your whole relationship with food gets distorted. And this is probably the single worst time of the year to not be able to taste properly!

post-op progress report

It has been six weeks since my surgery, so it's time for another update.

All the on-site help left at the end of my 3rd week post-op, so I've been flying solo (not really, it just seems that way when DH is at work) since then and doing generally OK. I haven't had, or needed, a melt-down yet. That's a relief. Sometimes when you haven't had to do something for a while and then it gets dumped back in your lap, it can seem harder than it really is. So far so good on the coping front.

My head and neck mobility are excellent, and Elf is very pleased with my progress. I still have slight right-sided weakness in the arm and shoulder that we're working on -- I'm in physical therapy 3x/week, and boy does that take a chunk out of my errand-running time. I was diligent about doing my p/t exercises at home for about the first month, but I have really slacked off in the past week or so. I'm either going to p/t or taking a yoga class every day, it seems, so is it really so important? Yes, I know it is, but I've been doing so much running around that I haven't been making it a priority. I'll ask Elf about it tomorrow, because I don't want to screw myself up by not doing them when I've made so much progress already.

I still have the numbness and very tight feeling in the right side of my neck and affecting my right ear, too. (Unexpected, related downer: I can't find my diamond stud earrings, last seen in Houston! I didn't wear them home because my ear felt too weird for studs, and I don't know where I put them to bring them home... I'm very upset with myself for losing them, but I'm still hoping they will turn up somewhere.) Elf has been working at massage to loosen things up in there, and it is helping; I'm having more and more electric-shock and tiny ice-pick feelings along the jawline and down the neck, lately. While annoying, these feelings are to the good, because it means that sensations are returning. I'm hopeful that eventually everything will be normal again.

Both Elf and my ENT commented that my scar is looking excellent and has good mobility. It twinges me from time to time, and I have been massaging it every day with Aquaphore (recommended by my dermatologist for all my other biopsies and scars, so why not this one, I figured.) Here's the scary picture with the steri-strips and the drain; here's the scar at 3 weeks out. Which brings us to today. Sorry these photos are a little blurry, my camera batteries were dying, so I took these shots quickly -- and poorly, it seems, but good enough to see the improvement, I think!




Because these photos are crummy, I didn't bother cropping them down, so consequently you can see a lot more neck than in the other photos. One thing that really leaps out at me is how much swelling I had in my neck, which has completely disappeared. The other obvious thing is that the depression in the center of my neck is slightly exaggerated, as my surgeon said it would be -- that's from the bilateral paratracheal dissection, he actually removed muscle tissue from in there, so it looks like my neck is caving in a little there. I'm sure it's not anything that most people would ever notice. Last, the act of holding out the camera to take the picture causes some of my neck muscles to flex a bit, and that is contributing to the ropiness of my neck in these shots. I don't always look like I'm straining!

The scar itself comes off a bit more red in the photo than it really is, but again, I'm too lazy to manipulate the photo to bring it into alignment with reality. At this point, very few people notice my scar, and even fewer comment on it -- that's fine with me.

One annoying thing is that because of the long incision and the nerve weirdness in my neck, I can't stand to have anything on it. Most winters I live in turtlenecks and mock turtleneck tops, and I have a drawer full of them that I simply cannot wear right now -- and who knows whether or not I'll get comfortable over the course of the winter? I went to the Gap today and bought some new long-sleeve T's. I looked a few other places but I went with the Gap's because I like how they fit me -- I know they'll fit.

They finally posted my statement over at MDA -- they say I only owe $1700. I'm not going to argue, but we are going to wait to pay it until closer till the end of the year!

I am, as I said, allowing myself to think that I'm done with the active management/eradication phase of the Cancer Cycle. I could be wrong, but I hope I'm not. Right now the biggest worry I have is getting new prescriptions out of the endos at MDA in time for me to get them filled by the mail order folks. I'm sure it will work out one way or another. It's great to contemplate a future in which no horrofic procedures or treatments involving radiation are planned.

past tense

I'm getting used to the idea that I can now say this: I had cancer.

I'm astonished at how feelings of near-joyful relief keep washing over me when I don't expect them. I tried not to fret about the situation consciously too much, but it was always there, weighing on me, from the afternoon of September 2 when my endo first told me she wanted me to go Houston. Two solid months' worth of uncertainty and stress are slowly, slowly lifting, like fog evaporating in the morning sun. It's awesome to recognize a surprising feeling and have it be happiness.

It's going to be an excellent Thanksgiving.

cancer update

I got a call this afternoon from S, the nurse in Houston. For some reason she had just received another copy of the same labs that were faxed over two weeks ago. Neither one of us could figure out an explanation other than the lab, for some reason mailing the results after faxing them over immediately, but hey, no big deal.

Since I had her on the phone, I took the opportunity to quiz her about my pathology report. The details as best I recall are: 25 nodes were removed, 9 were positive. Most of the positive nodes were at Level 3 and 4 (I'm not sure what that means.) All of the cancer was encapsulated. There was no vascular invasion. The muscle tissue that was removed showed no invasion. The diagnosis on the cancer itself continued to be standard metatastic papillary thyroid cancer -- not an aggressive variant or anything weird.

The bottom line is, there is good reason to believe they got it all.

For my trip in February, it will be a quick in-and-out, diagnostics on Monday, doctor's appointment on Tuesday, can fly home Tuesday evening. We're not expecting any surprises, S said drily when I asked her about whether other tests would be necessary.

So I don't have to worry about LID or Thyrogen or nuclear scans or any of that stuff. I know I've said this before but there's a good chance that this really is the last treatment I'll need. I'd really like never to have RAI again. That would be so cool.

At physical therapy this morning, Elf was raving about my scar. She couldn't get over how great it looks. Now if I could just get the feeling back in my neck, everything will be cool.

the neck dissection experience: 3 weeks post-op

Three weeks ago at this time I was sitting in pre-op in Houston, nervous and thirsty, and just wanting to get it all over with. I think if I had known how weird my neck would feel afterwards, I would've spent a lot more time enjoying the fact that I could move it so freely! I can't believe it has been three weeks. That doesn't seem possible.

For the record, the procedures I underwent were: a complete right neck dissection, a bilateral paratracheal dissection, a central compartment dissection, and a superior mediastinal dissection. Here and here are links that explain some of these terms.

I finally removed the steri-strips after my shower this morning. It wasn't at all painful, although it was a little nerve-wracking because I expected it to be. Now I have a lovely wrap-around scar. Since this photo is a lot less grim than the first one I took, I'm posting it. It's certainly no worse than a lot of stuff you'll see on TV, so I hope nobody gets too upset about it.



Just so you know, that "lovely" up there wasn't at all sarcastic. This is a really nice-looking scar, as scars go, especially given that I'm only 3 weeks post-op. Comparing the two photos, you can see how the swelling has gone down considerably.

Now, as to the rest of it: the numbness persists with no discernible progress, except that my right ear lobe feels itchy now and then. I suppose that is progress! I get the itchy feeling also sometimes under my jawline, but for the most part, the "novocaine hasn't worn off yet" feeling persist in the ear as mentioned, under the jaw, all the way down the front of my neck along the right side. It's very funny (weird, not ha-ha) in that there is a definite line of demarcation right down the center of my neck, sensations registering on one side, while none do on the other.

My head, neck, and shoulder mobility are very good. Certain stretches, like tilting the head so the ear goes to the shoulder, are more challenging than others, but even those are working out. I am trying to massage those very tight muscles during some stretches and that helps, too. I am religious with the exercises and with my physical therapy. Elf really makes me work! But it's good.

I would feel very comfortable driving today if I had to; the main issue with driving is being able to turn my head far enough and without hesitation -- that's something I find myself doing constantly just in dealing with the kiddos while I'm sitting at the computer. I'm sure I can turn my head farther now than a lot of non-surgically-impaired drivers can, so it's not an issue.

One thing that pops up from time to time is right-sided weakness in the arm and shoulder. Last night I made a pot of sticky rice to go along with our sesame steak, and I had a very hard time holding up the pot with my right hand while I scooped out the rice with the serving spoon in my left. Since I am left-handed I often use my right arm for the steadying/holding role in situations like that, and whenever I do, now, I notice how much weaker it is. PT will continue and hopefully it will improve. It's no fun to have such an imbalance.

I still don't do much lifting, although I did carry a laundry basket upstairs a few days ago. I do carry DS2 to bed every night now, and toss him in when we get there. He only weighs about 35 pounds and I'm not even supporting his weight with my arms; he wraps arms and legs around me and holds on like a koala. Adding back this part of our routine has made him a very happy boy. I haven't noticed any aches or tweaks from carrying, but I'll continue to be careful.

One twinge I've noticed is a kind of "crunchy" feeling right in my shoulder joints, both left and right, when I'm doing the shoulder lifting exercises. Elf says I need to be sure to keep them back while I'm lifting, and that has helped a lot, but I do still feel it from time to time. I'm wondering if that could be from my RA.

Med-wise, I'm taking Aleve twice a day, and Tylenol as necessary. I haven't had a really bad headache day since Tuesday, but I'm pretty sure that sitting at a computer all day will contribute to a headache. I get brutal muscle tension along my shoulders and the back of my head; Elf showed me some new stretches that really help a lot to relax them and reduce the headaches.

I get tired easily, and admit to being down more than up these past few days. I forgot to take my Prilosec two days in a row and having acid churning around in my stomach didn't help at all. I'm trying not to be on edge regarding my pathology report, which I still don't have, or my prognosis, which I have no idea when I'll get, in spite of emails I've sent, asking when I could expect it.

It does no good to think about these things; there's nothing I can do about them right now, anyway. Even though I'm doing very well and am a long way back to normal, it will take a long time to really recover from this surgery, both physically and emotionally. For now the thing that bothers me most is how weird my ear feels -- it calls attention to itself whenever I tuck hair behind it, for example, or else it just feels cold. I suppose I should be happy that I'm feeling something but it's ennervating.

I'm glad I can ignore it for the most part. The plan now is to continue to focus on regaining both strength and mobility.

a familiar place

I'm pretty sure I was here last October around this time, too. Post-operative, realizing that the surgery I have just been through was pretty serious, after all. I manage to get through these things by repeating a mantra of "It's not so bad, it's not so bad," because it helps me to not think about how bad it really is.

Of course, there are a lot of things that are worse.

Still, it has been a little over a year now that I have been dealing with this cancer thing, and in all honesty I still don't want to believe it. Parts of me just reject the notion outright. Cancer? How absurd! How could I possibly have cancer? I'm too busy, too fit, too healthy to have cancer! I have a life here, could I please get back to it now?

Not yet.

Maybe whatever lesson I am supposed to learn (if any) from this didn't make enough of an impression last year, and so I am enduring essentially the same thing all over again, only worse. ("Once more, with feeling!")

I don't believe in karma, however much I enjoy My Name is Earl, (warning: audio on the link) but even if I did, I would have to call the karmic overlords on the carpet and give them a good chewing out. What's going on here? Did they err on the side of "too many blessings" and so have to even things out with this repetitive surgery theme? I didn't think it was supposed to work that way, anyway.

So here I am again, offhandedly contemplating my mortality. It makes no sense whatsoever for me to be given three amazing children only for me to be taken away from them. I understand, though, that it's not up to me to make sense of things like that. But if it's going to happen, it won't be because I gave up.

I had a Cancer Talk with DH last night. I don't think I ever told him before that sometimes in the past when I have been sick, I have thought that it would be easier to be dead. (Key sign of depression, right there.) I don't feel that way now, and can't imagine ever feeling that way again. I suppose I might get tired sometimes, but that's not the same thing at all. Today was a very hard day, perhaps the hardest since my surgery. Today was a day when a lot of realizations started sinking in: I really do have cancer, and my cancer is doing unexpected and quite serious things. That surgery was major, no matter how I want to spin it as "only moderately invasive."

I think it is a self-protective tendency, not to admit these things to myself until after they have been addressed. Aggressive cancer? Extensive surgery? Too scary too contemplate, and so I minimize them until it's over. Now I can start the alignment of my understanding with reality, and it's never easy. But it is easier knowing that one of the hard parts is over, at least for now.

Other difficulties remain, of course. How will what comes out of this surgery affect my life going forward? I like that the doctors at MDA take a pragmatic approach. When I asked about being tested for the breast cancer gene, they asked me why, would it change any part of my life? I answered no, since I already get an annual mammogram and do the self-exams as well. So they said, what would be the point?

I don't know what's going to come out of the pathology report and how that will change my follow-up. For now I know what I have to do to continue my astonishing recovery -- keep up my physical therapy exercises, eat well, and get plenty of sleep. I love my naps, and today actually slept well. My post-drain-removal trauma subsided as the evening wore on, until I actually felt quite human by about 8PM. My in-laws are arriving in the morning, and I'll be leaning on them heavily in the next couple of weeks.

After my last 3 surgeries I really did too much too quickly, post-op. This time I honestly don't think I have it in me. Last year after my thyroidectomy I was driving by this time! Yikes. I'm nowhere near that, this year. I have to let myself believe that this is as serious as it is. I have to take this seriously, and let myself get better at a decent pace. I have help, and I will use it.

I want to say, I'll be OK -- I know I'll be OK in the short term. I wish I knew what the long term holds, though. For now it's enough to focus on getting back to a normal schedule.

for the curious.

And for comparison purposes as the scar heels in the weeks and months ahead -- here is a photo of my incision and the bandage over my drain, at 5 days post-op. Don't click on the link if you're at all squeamish.

There's still a bit of swelling and odd puffiness in my throat, I'm sure it will take a while for that to subside. I know the front of my throat may look different when healing is complete because of the paratracheal dissection; the doctor removed some muscles from the front of my neck. He informs me that as a result I will no longer be able to sing vibrato, but I assured him that was no loss.

I haven't really tried to sing since the surgery -- just a few notes here and there, and it did feel weird but then again everything throat-related, including speaking and swallowing, feels weird now.

As DH was cleaning the drain site last night I said, I feel like something from a science fiction movie.

He didn't miss a beat: You mean like The Borg?



Yeah, well, at least I don't have a tube coming out of my skull.

out, about, and going home soon

Somehow I still can't believe it actually happened, even though I now have this huge incision around my neck. I also have a drain, which is kind of icky, but DH is a total trooper and is taking good care of both me and it. (I suppose that's kind of the same thing.)

Surgery took about 4-and-a-half hours. Since I had to repeat the procedure names about 12 times pre-op, I now know them by heart. I had: a complete right neck dissection, a central compartment dissection, a superior mediastinal dissection, and a bilateral paratracheal dissection. Doesn't that sound creepy? Now that it's done I can handle rattling that off a lot better. Anyway, the dr said he found a lot more cancer than he expected even from the ultrasound and the CT scan, so it is a very good thing I had this surgery now. I don't really like to think about the alternatives so I will just move right along...

I woke up in recovery feeling pretty OK and able to talk right away. I couldn't move my right shoulder or upper arm, but my hand and forearm were OK. Later that evening I could move both my shoulder and upper arm. Now the only numbness I have is along my right jawline, and my right ear. It's weird. I do have swelling on the right side of my neck, and I'm sure that has a lot to do with the numbness. Plus the poor nerves have been shocked all to pieces, I'm sure.

The staff kept a watchful eye on my calcium levels and my parathyroids seem to have come through OK. Even so the endo has bumped up my calcium to 3 grams/day. I had thought that I was only doing 1g/day before surgery but then I looked at the bottle and realized I was taking 2g/day, so no wonder I was low post-op -- I missed my 2g dose on surgery day.

Now I will tell you something you probably won't believe, but the food at MDA is quite good. There is a "room service" menu and you can order anything you want (depending on what diet you're on per dr's orders, of course -- but I was on "normal diet as tolerated"), so I had some pretty decent meals. One of the drinks they offered was peach nectar, which is a favorite so I had that more than once. Hey, if you can't indulge post-op, when can you? I also had some really amazing homemade granola with plain yogurt, which I think may be one of my all-time favorite breakfasts.

The nurses were terrific. I probably had 10 different people working with me between recovery and my room, and they were all very kind and helpful. And especially good about keeping the good pain management drugs flowing. Speaking of which, I am doing well there with minimal pain and only taking Celebrex for now. I have some hydrocodone (heavy duty stuff) to take if it gets worse, but it does make me feel very loopy. I don't sleep right on that stuff either -- I took one last night and drifted in and out until it wore off, when I finally fell properly asleep.

The physical therapist came in to see me and gave me my shoulder-strengthening exercises, and was amazed at my range of motion. I knew there was a reason for taking up yoga and swimming this fall. I have been a good girl and already done one rep of my exercises this morning.

So we had a late breakfast and now DH is seeing about our transportation to the airport tonight (our flight leaves after 8PM) and also about getting a duffel bag or something, because we have a lot of stuff we didn't anticipate getting -- both paperwork and supplies for caring for my drain. We need another bag! But all will be OK.

I am tired and my right arm feels like I played tennis all day with it. My incision around my neck is probably 9 inches long but doesn't hurt (yet) as the nerves are still shot, I'm sure. The surgeon placed the steri-strips perpendicular to the incision so the effect is one of a fringed collar. It would be funny if it weren't so freaky looking. I hope it doesn't scare the kids!

DH says he doesn't notice the swelling in my face but I do. All in all I don't look too bad considering what I went through, and I certainly feel better than I expected to. I am still nervous about the flight home but really looking forward to getting there. I know with DH I will be all right even if I have a little more pain or discomfort, it will only be for a short time.

Thank you everyone for all your thoughts and prayers. It has really been a tremendous help. This will probably be the longest update for a while since I know my mom will not let me sit at the computer for this long at home (hee!). That's OK, I'll pop in with little updates when I can. I'm doing well and going to be fine, both dr and physical therapist say back to normal activities after 4 weeks. That'll go by very quickly.

"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!

thyca update

Saw Dr. M this morning. My Tg is 1.4. Sigh. I was really hoping for undetectable.

My TSH was 0.07, which is fine, but I discussed with Dr. M that I take all my T4/T3 in the AM, and all the blood draws have been in the early AM, and so I'm wondering if my TSH is actually rising by the end of the day? Am I on a little cycle of suppressed-not suppressed as the T3 effectiveness falls off? We're doing a late afternoon blood draw to see what my TSH is then, and we'll see if I need to adjust my dosage or the times I need to take my meds.

Dr M also ordered a wide field ultrasound. She didn't feel any nodes today (quickly dismissing that one lump that has been bothering me as related to respiratory inflammation -- it is outside of the cervical chain.) However, she does want to get a look at the 3 nodes ("foci") that were identified in the follow-up scan I had in June.

After the fact, she concurs with the treatment decisions that were made in June. (Well, that's a relief.)

The ultrasound and new labs will be in a couple of weeks, so I can just try not to think about until then.

I was really hoping for an undetectable Tg, but it has been just over 2 months since the RAI, so it could fall still further. As usual, just have to wait and see what happens.

disturbed

I'm up late again tonight, although I slept for probably an hour earlier, lying on the couch not-watching Hitchcock's Rope. I have been TiVOing a lot of old movies lately, and that was one that showed up, but I realized I have seen it before so I just drifted right off to sleep.

This is one of those times when there's just too much happening, and I don't know when I'll be able to just release everything... I have the kids all day, which is really fine, but it's better when I get more sleep. Then there's the Rosie situation, which is not fine even though it was a good decision and the right decision, but it's just there, hanging in the background, waiting for me to deal with it.

Then there are people around me who are dealing with various stresses of their own, and I am of no help whatsoever, which sucks.

Last, I'm still feeling punked from the radiation etc. My salivaries do weird things from time to time, not as bad as they were in February, just not normal. Taste and digestion are still shot, and my diet has been terrible. Nothing really tastes good and eating just makes me feel (and be) sick, so -- ick. But I do eat, and I'm trying to be good about taking my supplements as well as my meds. Drinking is really a problem, since water tastes particularly horrible these days. Ice-cold Propel is about the only thing that tastes decent; my sense of sweet taste is working the best. Great! Just what I need -- only my sweet tastebuds are working! My teeth have become really sensitive but I have been too lazy to do flouride treatments. And my hands are killing me.

It's a vicious cycle, this is. The radiation causes physical side effects which produce stress, and the stress feeds into its own physical manifestations, which of course creates more stress...

Tomorrow: shopping, and probably making cookies. We need to shop for DH for Father's Day, we'll see how that goes. I should make a list of the things I want to get done before I leave, but that will probably send me right over the edge. I'm going to take it day by day and try to manage better that way.

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.

feels familiar

I'm generally OK these days, post-RAI, except when I'm not. Let's see:

- crushing fatigue that strikes at random, no matter how much sleep I'm getting? Check.

- fuzzy tongue, diminished salivary production, altered sense of taste? Check.

- complete aversion to coffee and other previous favorite foods as a result? Check.

- green-about-the-gills much of the time? Check.

- Other nasty digestive symptoms? Check.


Seems that being dosed with 100 mCi of radioactive iodine induces symptoms which perfectly mimic the early days of pregnancy. It was a lot easier to take when I was pregnant.

BTW, I am NOT pregnant. Just thought I would make that clear.

brief notes on the RAI experience

100 mCi is easier to deal with than 200 mCi.

I am climbing the walls. There is a huge difference between being post-op and hypo, on meds withdrawal for weeks, and being on Thyrogen.

Thyrogen is mondo expensive, but worth. every. cent.

Dr. S recommended 600 mg ibuprofen every 8 hours for RAI mumps; it works. Mostly.

My taste buds are shot. I'm not sure if it's from eating Altoids sours all day as directed, or from the RAI. Could be some of both. I feel like it was burned last week and is just now healing. There's no pain but my sense of taste seems to have evaporated. Here's hoping it comes back.

Heat packs are great on the swollen salivaries. I'm sure I looked ridiculous, but I took my bed buddy, a tube filled with rice with handles sewn onto each end, and nuked it for 2 minutes. Then I twisted the middle so that the two ends became heating pads joined by the twisted part. The twist goes under the chin, and the two heat packs lie right along all the salivaries in the neck and face -- lovely. You do have to hold the handles up, and I'm sure it looks ridiculous, but it really worked. I suppose you could tie them, but I don't like to leave it on for that long, and holding the two handles together wasn't that difficult.

Can't wait to get out tomorrow afternoon!

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.

my face hurts, round 47

All of my salivary glands are tender and a bit puffy. Nothing as bad as the worst attacks I had in February, when the swelling in my parotids was remarkable (as in, DH asking me, "Is your face bothering you now? Your cheek looks weird"), but still, this is the most discomfort I've felt in several weeks. All the glands under my jaw are very puffy... I look like I'm developing a wattle. I hate that look!

When I had my brief sojourn with the low iodine diet (LID) at the beginning of May, I had a few problems. Now it seems the longer I stay on LID, the worse these problems are getting, and it's hard for me to think that it's just a coincidence.

I've also got some hypo symptoms, like itching. I'm curious to see what my TSH is when this process starts on Tuesday. I wonder what it would mean if I went hypo just because I went on the LID?

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.

cautiously optimistic

Well, it took seeming forever but I finally got my Tg number today, sort of. I won't complain, because the news was good. The independent lab doesn't test to the level that the endo's does, so all I got was "less than 2.5", which is still quite useful, since it's less than 3.4, which is what it was last time.

I was so happy when I got off the phone after hearing that news that I actually jumped up and down a few times. DS1 thought that was just a little strange, and asked me about it, so I explained I had good news. Yay!

I called DH right away, and then talked to my mom, one of my sisters, one of my brothers -- that's enough to ensure that it will percolate through the family grape vine. And my MIL called to tell me how happy she was that the news is good, for now.

I now have a reasonable basis for hoping that maybe I won't need any more surgery or RAI. Who knows what will show up on the scan in May? We'll have to wait for that, and, as I like to say, jump off that bridge when we come to it. For now, I think I can deal with that.

don't wanna go there

I'm tired of cancer.

I have this idea that if I look to the future and make plans that's good. Then I have to implement the plans, and that means I need information. So I get the information, and it reminds me that my plans -- short, medium, and long term, are all subject to change... can't rely on being able to do anything.

It's not that I won't ever know (I hope), it's just that I won't know for a while. Maybe next week I'll know more. Maybe in May I'll know more; maybe then I'll see a six-month stretch with nothing to think about except a blood draw or two. Then again, maybe I'll be scheduling some horrific-sounding surgery.

What I have to do is accept that this is a part of my life and just integrate it -- blood draw for Tg next week? Yeah, that's no big deal (but the results?). LID and scans in a couple of months? Yep, that's not hard (but what about the results?). Another round of surgery, how about some more RAI? Gotta do what I gotta do...(AAAUUUGGGHHHHH!)

I'm still fighting that acceptance. It has been 5 months since my diagnosis and I'm still pushing it away, still hoping it will just...evaporate. I don't want it to be real. I don't want to have to live with this for the rest of my life. If I accept it, that will mean it's real. Of course my resistance doesn't make it any less real, but it does mean I'm constantly upset about it.

Intellectually I know that acceptance would help, but that doesn't matter. I can't make myself accept this situation. It will have to happen over time. It's going to take a long, long while to get used to this idea.

calm before the storm?

Two things of import today: first, I saw my ENT, and he was great. Second, I got my reports from the whole body scans (WBS) I had done after my RAI treatment. My ENT got them about the same time I did, since his office staff faxed them over to me when they arrived there. (Thanks, Pam -- you are a gem!)

The fax comes in, I'm reading it over, and get to the money graf:

Impression:
Radioiodine accumulation in multiple lymph nodes in the neck and upper chest and possibly in residual thyroid tissue. There is no evidence of distant metastatic disease.

First reaction: yay! no distant metastases.

Second reaction: multiple lymph nodes?! No one ever said anything about lymph nodes before. My impression had been that all the uptake in the neck was from residual thyroid tissue. Hmmmm....

Around the time I'm thinking, "Hmmmm...." the phone rings; it's the ENT. He just read the scan report, too, and wants to know: Did I have a neck dissection? Was I scheduled for one?

Well, no. I reviewed the treatment/management plan with him and said I was OK with it. I am, for now -- because next week I'm having bloodwork done again. If my Tg is up again, I will not wait for May for a scan, etc. I will push for earlier treatment, I have pretty much decided.

Treatment, however, is almost certain to be a neck dissection, because lymph nodes are typically resistant to RAI.

I'm doing well not freaking out because there was some balancing good news. The large mass that was identified on my neck u/s following the TT is no longer there! The ENT told me that he would certainly have felt it in my skinny neck (he was much more diplomatic in how he put it), and since that large mass was assumed to be a bunch of swollen lymph nodes, that's a good thing, right? Oh, who knows? I sure don't.

I'll have more information next week, and maybe then I'll be freaking out. But I'm too tired to freak out about some uncertainty.

Other positive things about today: the ENT is obviously fantastic -- he called me. Personally. Not his nurse or assistant, either. That's very cool.
Info from the appointment:
1) He thinks my salivaries will settle down eventually, and that all the swelling under my jawline and in my throat is just a different variant of what's happening with the right parotid gland. I can live with that -- he didn't recommend any invasive procedures or anything else expensive, either. Very cool.
2) He examined my vocal chords (boy, is that a strange process!) and said it looks like there may have been some damage to the supralingual nerve so that the right side is a little wonky, but voice/speech therapy might help with that. He said whenever I want to start, he can give me references -- I told him I will wait to see if I need more treatment, first. (Next week is going to be very interesting.)

All in all it was a very positive experience, and I'm happy to have this guy be part of my medical team.

My endo, Dr M, called today, too, which is a miracle. The message was barely 3 hours old. She OK'd me dropping my Cytomel dosage from 20mcg down to 15mcg. Whew. I was really not feeling well on so much. I'm very interested to see if I have any TSH at all next week! I talked to Dr M about the ENT's concerns about the lymph nodes, but she seemed satisfied that we were handling it all properly.

So I'm not freaking out yet, but I've already warned DH that if I need a neck dissection I will do some crying. It is getting to the point where I'm getting a phobia about being cut -- too many surgeries and biopsies and whatnots. Too many stitches. Too many scars. Too many assaults on my body!

But if they can go in and clean me out one more time so I can be done with it, that would be worth it! Another concern I have, can we do this in such a way that I can still have my super fantastic summer on Cape Cod? I hope so. I don't think I want to wait until August, when we get home again, to deal with this.

What a day.

diving in

I posted at the ThyCa Survivor's Yahoo group today -- that was like diving into this whole (thankfully limited, but still large) world where everyone knows what's like to have thyroid cancer and terms like TSH and Tg are tossed around effortlessly, not to mention LID and WBS and T4, etc etc etc.

I also continued my email correspondence with the Phoenix ThyCa rep, who is just awesome.

I feel as if I have uncovered a huge treasure trove of knowledge... the temptation to swim through it endlessly is very strong, but I'm limiting how much I get involved because I know me, and I can't let myself get obsessed with it.

I spent a good deal of time this evening answering emails about my history and treatment so far. Everyone has been helpful but it is hard going over the old ground again and again. I feel a little worn down by it, but I've also gained some new knowledge and perspective, and that helps a lot.

There are people out there who've been living with Stage IV for years -- sure, it's there, but it's not really causing problems and they can just get on with their lives. Even if I do have an aggressive cancer, the tracking and treatment protocols are the same -- so there isn't anything else I can be doing right now.

At least, that's how it seems, and that's a comfort. I may need more treatment down the line, but for now I'm going to just keep swimming.

Yes, the peewees did watch Finding Nemo today -- I recommend it. It is a nearly perfect movie.

whine whine whine

I decided this morning to call my endo and see what she had to say. Yes, it is obnoxious to call your doctor with a non-emergency situation during the weekend, however I have had so many problems getting messages to her during the week that I did it anyway.

She agrees that it is an inflammation of my parotid gland.

She doesn't think this is related to my RAI. She expects it to resolve on its own with a little heat, but commented that if it doesn't, or if I start running a fever, I might need a course of antibiotics. She did mention that if it isn't better by Tuesday that I should go in and see her (that's the day she's in the office closest to me).

Honestly, I think she's delusional to not attribute this to the RAI. I made myself a little heat pack out of an old sock and some rice,and it's the perfect size to hold up against my face. The warmth feels good and it did seem to help, but this afternoon it went all spazzy again. Sometimes I get a big rush of salty saliva and it's quite disconcerting.

At Mass in the late afternoon, all the rest of my salivaries started that tingly feeling that usually means you're going to throw up. My stomach is as calm as could be, though, so I know it's just salivary weirdness. The left parotid is starting to ache a little, too, but nothing like the right one -- so far, and I'm hoping it doesn't get any worse.

I've had episodes today of feeling quite unwell -- nothing specific, just general overall ick. I have no idea what's going on, whether it's related to what's going on in my face or my gut or what. Grrrrr.

I slept until 10 this morning and took a nap this afternoon. The major accomplishment of the day was helping DS1 organize his facts and draft his Gila monster project. It is very interesting to see how an 8-year-old's brain works.

dx

I'm fairly sure of my face pain diagnosis: post-radiation effects on my parotid salivary gland. Here's a picture I'm nicking from the MedLine Encyclopedia:

It's definitely the parotid, the biggest of the salivaries, just under the cheekbone, in front of the ear.

After the movie, I experienced my latest weird symptom: very salty-tasting saliva, but only on the right side of my mouth, on the top. Extensive Googling turned up this article, RadioIodine and Your Salivary Glands. This article is a layman's version of a medical journal article I had found earlier. I would've had to shell out $44 to read the real deal, and probably would've only understood half of it, so I was very glad to find the summary.

Key grafs which I'm trying not to freak out over (emphasis added):

In most cases, immediately after high doses of radioiodine, the salivary glands, especially the parotid glands, become swollen and painful. Alternately, these symptoms can develop months later. In either case, the effects intensify over time.

(I did have "mumps" during the RAI isolation period.)

and:

Other organs known to concentrate and transport iodine include the gastric mucosa, pancreas, lactating mammary glands, chorid plexus and the ciliary body of the eye.

Have I mentioned that I've been getting a pain under my right rib cage, off and on, recently? I was thinking it was just adhesions or scarring from my gallbladder surgery last year, but now I'm trying not to think about what else it could be.

Anyway, I think I will let my endo know that this is happening and see if there is anything she needs/wants (me) to do. If inflammation of the salivaries gets severe, apparently, nerves can be affected and facial paralysis can result (whee!). Wouldn't want that to happen, but I've no idea what, if anything, they can do to treat this or fix any ongoing damage.

cancer management update

Dr M was, as usual, quite late to our appointment this morning, but then she made it up by staying to answer every last one of my questions. The only one she out-right ducked was, "What stage is my cancer?" She replied quite simply, "I don't do staging."

Wouldn't it be nice if we could play the "I don't do..." card whenever someone presented us with something we'd frankly rather not do?

Anyway: whether I am stage 1 or stage 2 is immaterial, because the treatment/management is the same, regardless, even if the 5-year survival rates are not. I let her get away with it. We had too much other stuff to discuss for me to waste time busting her on it.

Stats:
TSH: 0.25
T4 & T3 numbers were "a little low," she said, I don't have the exact numbers
Tg: 3.4
Tg Ab: undetectable (yay!)

TSH is still too high. She bumped my Cytomel up from 10mcg/day to 25mcg/day. Yikes! I have been taking 2 5mcg pills in the morning, so this afternoon I popped 3 more, and you know, I do feel pretty peppy. We'll see how it goes in the longer term. I have to watch out for heart palpitations and general anxiety, as well as other hyper symptoms; if those develop, I can drop down to 20, but she really wants to get that TSH down to undetectable for now -- eventually it can come up to 0.10, but she wants it way, way down. Fine by me.

Next labs will be in 6 weeks, and I have already made the appointment. After the appointment, I'm to call her to get the results and see if we need to tinker with anything.

The next labs will be a good indicator of how things are going. Because I do not have Tg antibodies, my Tg readings are a reliable indicator of whether or not I have any remaining thyroid or thyroid cancer activity. So, Tg should decrease over these next 6 weeks. My pre-surgery Tg was over 300 (consistent with having a thyroid, not at all freakish), and she didn't seem to think it still being 3.4 four months post-op was unheard of. Still, she'd like it to be undetectable, too. Update: according to this site, the normal range for a female with a thyroid is less than 40! Who knew? Obviously I didn't, when I wrote this yesterday. The fact that my Tg was up around 300 is, I think, a pretty good indicator that my particular cancer cells were cranking out Tg at quite a clip. There are two things that "good" thyroid cancers do: first, they uptake iodine, so RAI can kill them off. Second, and nearly as important, they produce Tg, so we can keep track of them via a simple blood test. It would seem that my cancer is very well-behaved, considering. (end update)

Soooo, if Tg stays the same or goes up, then what? Well, I had a salivary gland targeted as suspect right after my surgery. My PCP, upon exam, ordered an ultrasound, and when that came back he wanted to do a CT scan. But that was postponed because I was going for the RAI and the WBS. The gland is definitely still somewhat enlarged and odd-feeling. Dr M suggests that if Tg does not drop, a CT scan of the gland will be in order. If done right away that would give 2+ months for the iodine from the contrast to be flushed from my system. That may not be long enough. Maybe they can do a scan without the iodine? Here's hoping I won't need it.

I'm set up for an appointment at the beginning of May to schedule my thyrogen WBS -- the follow-up scan, sometime in mid-May. I asked if we would have any indication before the scan as to whether or not further treatment would be necessary. She said that Tg levels could tell us beforehand that something should be done -- just not what (RAI, or surgery.) The scan would tell us that. She also stressed that having undetectable Tg does not mean that I won't require further treatment. Still, one can always hope.

The good news, though, is that if any necessary treatment would interfere with our vacation plans, it can wait until August when we get back.

I asked about my voice stamina, and she said to give it a good 6 months and then see an ENT for evaluation if it is still giving out on me. She did say it would probably strengthen over time, but I will be dealing with scar tissue forever. "Your surgery was quite extensive," she said.

She was flipping through the path report and snorted. "There was no cancer in your nodule!" Yes, that was quite annoying. She did the FNA and took great samples but of course the cancer didn't show up because it was everywhere except in the nodule!

Yes, sometimes I do have the impression I am being toyed with. Why do you ask?

We talked about other stuff, too, like calcium levels (up 2000 mg/day is OK, but no more), and other things I can't remember. I am not inspired to go get my notes, either. Yes, I brought my notebook with me as I didn't want to forget any of my questions. I must be doing better to be able to remember all this stuff at this time of the day.

The bottom line is a new level of medications and another 6 weeks of waiting before I know anything. Maybe I can start getting some things done around here.

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.