Living with Thyroid Cancer

So, in addition to teaching full time now (!), volunteering in my church's religious ed dept, and co-facilitating a monthly thyroid cancer support meeting, I'm on tap later this month to get the patient's perspective on living with thyroid cancer as part of a panel discussion. (whew!) Here are the details, from the official flyer produced by The Cancer Center at Chandler Regional Medical Center:

“Living with Thyroid Cancer”

A Community Event


The Cancer Center at Chandler Regional Medical Center is pleased to host “Living with Thyroid Cancer”, a community educational event where the latest medical information regarding thyroid cancer will be shared by leading experts in the field. We are fortunate to have gathered physicians in the field of thyroid cancer to speak and share information about the latest medical treatment and management of thyroid cancer. In addition, a thyroid cancer survivor will share her experience living with this lesser known, complex disease.

When: September 23, 2010 6-8 pm

Where: The Cancer Center Lobby at Chandler Regional Medical Center
1875 W Frye Rd
Chandler, AZ 85224
(SE corner of Dobson and Frye Rd)
480-459-7342

Target Audience: Anyone interested in learning more about thyroid cancer including current patients, survivors, family members and friends.

Cost of event: FREE

RSVP: Please call ResourceLink at 877-728-5414 or email resourcelink@chw.edu to register (required).


Audience will be provided the opportunity to ask their topic related questions of the physicians during this event. Light refreshments will be served.

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Me again. We'll have an endocrinologist, a radiation oncologist, and a head and neck surgeon (and me) speaking and available for questions. I'm already collecting my thoughts and building up the outline of what I'm going to talk about: adjusting to post-thyroidectomy life with a "new normal", tinkering with medications, some common side effects, like salivary gland issues and voice problems... I get 15 minutes, which seems simultaneously infinite and way too short.

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.