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!

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.

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.

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.

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.