Tag Archives: thyroid lobectomy

Water Under the Bridge

VBS and Rustic Youth Camp are done.

VBS went very well, I think.  I ended up not doing quite all that I planned, but that was ok, and a good lesson to learn in not biting off more than I can chew.  Usually, if I don’t end up achieving all that I hoped to on a project, I blame myself for not working harder.  Maybe, finally, I am coming to realize that some of the problem is that I tend to have grand ideas–bigger than I am able to pull off sometimes.  This season in my life is teaching me that I don’t have to do amazing and spectacular things to be effective.

Camp was wonderful.  It was so much fun to have Sarah and the kids there.  It was a blessing to see so many good friends and to make new ones, too.  I need to work on the way I interact with children, including mine.  I have a tendency to be more stern than I need to be–to jump to sternness instead of letting gentleness be my trademark.  I don’t think I did a bad job as a teacher, but I could have done better.  Always more to learn.

To review my last post, I was anxious because I wanted to have an ultrasound done on my neck to look for suspicious lymph nodes.  The American Thyroid Association and the National Comprehensive Cancer Network both recommend such an ultrasound prior to surgery for Papillary Thyroid Carcinoma (PTC) because it spreads to lymph nodes so frequently, and it’s better to get effected lymph nodes out in the first surgery if possible.

I was going to try to just accept that Dr. B hadn’t ordered it and it would be ok, but I couldn’t let it go, so I emailed him to ask him about it.  He said that he would be glad to do it, and I told him I would take him up on it.

Then I kept on reading–I wanted to learn more about the particular variant I was diagnosed with–Follicular Variant Papillary Thyroid Carcinoma (FVPTC) and even more specifically, encapsulated follicular variant (EnFVPTC).  What I learned was that EnFVPTC is much less likely than PTC to spread to lymph nodes. (More about that in my next post.)  So then I felt a little silly about requesting the ultrasound.  I decided that if they called and told me it was scheduled during camp week I would just cancel it rather than rescheduling.

And that’s what happened.  Dr. B’s nurse called and told me my ultrasound was set for July 3rd.  I told her that I would just cancel it, since I would be out of town. Then ADI–the place that actually does the ultrasounds–called to pre-register me.  I cancelled with them as well.  Then, while I was gone, ADI called the house REPEATEDLY to pre-register me, and Dr. B’s nurse called me again to tell me that my ultrasound was actually July 2nd, not the 3rd.  All this was kind of confusing to me, since I had told Dr. B’s nurse that I was cancelling the ultrasound, since it was at my request anyway.  I am sure that Dr. B is going to think I am a complete nut job before this is all over.  The only thing I know to do is to be as sweet as possible to them.

Also behind me is another crisis on this journey. I had to decide whether or not to have this surgery done.  I’ve already outlined my anxieties about it.  For a few days, I was seriously considering calling it off.  Ultimately, I decided that I would do it.

The main reason for me to not have the surgery was fear of an apocalyptic future event that would leave me without medicine.  What I decided was that in such an event, my survival was unlikely anyway, and I couldn’t base my decision on speculation.  If I kept half of my thyroid, my chances of recurrence would be much higher.

I have also been anxious about adjusting to life without a thyroid–again, the message boards add fuel to the fire.  There are so  many over there who have struggled to adjust to life on thyroid replacement.

And the honest truth is that I know myself, and I am a person who likes to keep my options open.  I don’t like making irreversible decisions.

Anyway, my completion thyroidectomy is scheduled for Thursday, July 11th, three days from now. After all of that, I feel that it’s the best decision I could make for my circumstances.  I’m hoping all of these anxieties can just be water under the bridge as we move forward.

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Weaning, Whining, and Well-Wishes

Alliterative titles: cutting edge or passe?

First weaning–it’s been rocky, people,  but I think I have found the solution: Chocolate.  A couple of mornings ago, Eleanor was crying, begging to nurse.  I almost started crying myself.  But then my wise, sweet husband rescued me by offering Eleanor a precious treasure:  A Thin Mint Girl Scout cookie.  She took it and was fine.  So now, when she is asking to nurse, I offer her a piece of chocolate instead, and it is getting us over the hump.  She is asking less.

Whining–well, we can save that for later…

Well-wishes.  I have the very, very best friends and family–including my family in Christ–in the world.  I have gotten some of the sweetest cards.  The food offerings have been amazing.  A sweet sister called me on Monday with an offer to order pizza for our family.  I told her I had “canceled” the rest of our meal list because I was doing so well and knew I would need help again after my second surgery.  She said, “Well, I’d like to help you out now and later too.”  So Monday night we had pizza.

Ok, this doesn’t fit into my neat, alliterative title, but the mom of the two boys down the street with whom Silas and Elliot play almost daily came to the door yesterday to pick up one of her sons.  We don’t meet face-to-face very often–our boys usually just run up and down the street to visit with each other, and A (the mom) and I text or talk by phone as needed.  So she hadn’t seen me since all this thyroid business started.  She saw the bandage on my neck (actually a scar-reducing patch) and asked me what was going on.  I saw she had a scar on her neck too.  Because she had thyroid cancer about a year ago.  Same process as me–lobectomy, completion thyroidectomy, then RAI (which I’m hoping will NOT be part of my process) and is now on thyroid replacement.  She sees Dr. S, whom my friend S recommended to me.  I may have to still look him up, but I am going to give Dr. G a chance as my “manager” first.  It’s just one more of those “out of the woodwork” experiences for me.  (There’s the alliteration I missed–Woodwork!)

Ok, now the whining.  As always, feel free to skip the rest of this post if you don’t want to hear me complain.  I will never know the difference! :)

I don’t want to lose my thyroid.  It freaks me out.  I don’t want to deal with the process of trying to adjust my meds so that I feel right.  I don’t want to be dependent upon a drug manufacturer for my life.  I know that this is what we need to do.  I’ve read enough stories over on the Thyca boards to know that even Papillary Carcinoma can spread and grow and make my life awful, and it’s better to get the whole thyroid out and pray no lymph nodes are affected yet.

But I do. not. want. to. depend. on. a. drug. for. my. life.

I am just going to have to get over it.  But I don’t know how.  May the Lord help me overcome my anxiety.  I just have to remember that this life is not what it’s all about.

 

Third Day Post-Op

Today is Monday, three days out from surgery.

First, a couple of details from my surgery that I haven’t recorded yet.  My parathyroid glands on that side did great, according to Dr. B.  So that’s a definite positive. Also, the “other” nodule, the one that initially was more scary on ultrasound but came back with a benign FNA still looked benign on frozen section.  Of course, I still want to see the report on it, but I am not worried about it at all.

We are still nursing in the morning.  I’m kind of glad I can provide that kind of continuity for Eleanor during this time.  Bless her heart, it’s hard when Mommy has a big boo boo on her neck and can’t pick you up.  We’ll get that last feeding gone sometime.

One thing I didn’t think through before surgery was making sure I had enough scoop-neck and v-neck t-shirts to wear for the first little while.  Down the road, I am going to be glad my scar is low enough for a regular t-shirt to cover it, but right now having something against it doesn’t feel great.

My incision is looking a little more gnarly today–more bruising etc.  But still not bad. Check it out:

IMAG1120

Also, I am not having much pain at all today. Really, my pain has not been bad from the beginning.  But I have still been feeling sort of crummy and tired.  Ever since I got home, I’ve felt like I might have a little fever.  Today I finally checked it, and it was 99.3.  Not too high, but enough to make me feel punk.  My discharge instructions say to call if I have fever over 100.4.  So I’m not too worried about it, but will keep an eye on it.

I’m also faithfully taking my antibiotic, even though I wasn’t originally sure that I would.  Dr. B, when he saw me the morning after surgery, said that it was mostly precautionary since they wouldn’t be watching me in the hospital. But that first day home, when I first started feeling a little hot, I decided to go ahead and take it.

I have been coughing some (not super comfortable, but normal, from what I’ve read), and my throat feels a bit more “gunky” on the inside today.  So I’m now sucking on On Guard throat drops.

One question I’ve had is whether I will be up to teaching my childbirth class tomorrow night.  Part of me says that I don’t feel that bad and not to be a wimp, but my rational brain is telling me that I’m still mostly affixed to the couch and don’t need to push it.  I just dread trying to make the class up.  Maybe by Friday I will be feeling better?

My follow up appointment is scheduled for Friday morning.  The old me, pre-surgery, would not have been content to just wait until my appointment to find out what my pathology report said if there was any way to know earlier.  The new, just-trying-to-get-over-this-surgery-and-a-little-scared-I-might-need-another-one me, is going to wait.  If I need to know before Friday, say, because we need to schedule a completion thyroidectomy, I am confident that Dr. B will contact me.

About that.  I am ashamed to say that I am having a hard time praying right now.  Is my faith really that wimpy?  I think I am a  scared to pray very hard that my lump is not cancer because I don’t know if God will spare me this, and it’s hard to be disappointed that way.  I  KNOW he knows what’s best and what will work out for my ultimate good.  I know he can use whatever Satan throws at me to refine and shape me into the person he wants me to be.  I just really don’t want to have Hurthle cell cancer!  “Let this cup pass from me!” I want to say.  I should say it.  I’m just afraid His answer might not be what I want it to be.

That’s not to say that I haven’t been praying at all.  I just haven’t been doing the kind of serious intervention type prayers I normally do when there is something big going on.  May He have mercy on me in my weakness and give me the strength to turn to Him the way I need to.

The really, really good news is that I know there are a lot of people praying for me right now.  Obviously, that doesn’t mean that I don’t need to pray too, but it’s very wonderful and comforting to know.  Also amazing and comforting is the meal list that Mrs. D put together for us…we will be getting meals EVERY NIGHT for the next 10 days.  I think it’s way more than we will need, but I am SOOOO thankful.  It will make things so much easier on Rusty.

My dear friend R is coming in tonight on her whirlwind visit from Brazil.  She and her kiddos will only be here in the evenings, so we decided not to cancel her stay after my surgery was scheduled right before her visit.  She generally uses us as a hotel while she visits with her in-laws in a nearby city, getting in two visits at once.  She called me to let me know that her husband’s grandmother, who has been sick for a long time, passed away this morning.  So she will likely be here another day or two beyond what she originally thought.  I am sad that they have this loss to face, but glad that I will get a little more time with her.

The incision

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This is from the morning after surgery.  Looks pretty good, huh?  Nice work, Dr. B.

The next thing I remember…

Surgery went really well. My nurses were all super sweet. And it wasn’t crowded or backed up like I thought it would be. W, C, P, and J came and hung out with Rusty while I was in surgery. I was so glad he didn’t have to sit in the waiting room alone.

In preop, they got me situated–stripped, gowned, I.V.’d, etc– and then called Rusty back to be with me. We hung out while they gave me my first and second dose of sedative. I don’t remember much after that…Rusty says he kissed me as I left.

I have a foggy memory of them shifting me to the operating table.  After that, the next thing I remember a nurse in post op saying, “It’s all done, and it’s benign!”

That’s the only thing that has bothered me about the whole process. To be told, “It’s benign,” the instant I wake up, when really, we won’t know that until final pathology is done, seems PROFOUNDLY irresponsible. It wasn’t the nurse’s fault. She was repeating what she’d been told.

Dr. B was also very positive when he spoke with Rusty after surgery. Which was fine, given that surgery went so well. But he basically led Rusty to believe that all worries are over. And I hope they are, but I won’t be able to rest completely easy until that final report is back.

I wanted to talk to Dr. B myself to see if there was something he saw during surgery that led him to believe that all worries were over, like maybe if the Hurthle cell lesion was unencapsulated, which would suggest benign metaplasia. Fortunately, he came by to see me this morning, so I got my chance.

Just as I thought, when he said, “benign,” what he meant was no malignancy found on the frozen section samples during surgery. Then he told me they were 90% accurate.  Which is misleading. Because when they find malignancy in a Hurthle cell or follicular neoplasm, frozen section testing is very accurate. But for those two kinds of thyroid lesions, frozen section analysis has only a 20-40% sensitivity. That means that it fails to catch 60-80% of malignancies.

That’s because frozen section testing only looks at a few samples from the tumor, and if there is capsular or vascular invasion at even one point, the lesion is malignant. I’m not even sure why they do it, to be honest.

So I asked Dr. B if it was encapsulated, and he said that it looked like it, but he only final pathology will tell for sure. Which is what I thought. I just hate that we probably got some people’s hopes up prematurely. But maybe those hopes will be fulfilled, and they need never be the wiser.

So the words we are hoping for now are “Hurthle cell adenoma.”

My dear friend J stayed all night with me. We were able to catch up, and she pampered me, rubbing my calves where they were sore from the compression stockings they used during surgery.

The boys, of course did fine with Aunt Sharon, and so did Eleanor, for which I was SO thankful. She slept late yesterday morning, which made it possible to skip her nap, completely avoiding that sticky wicket. Then because she was sleepy, bedtime was a breeze.  And getting up this morning she was a little sensitive, but got through it ok.

She has not nursed all day, although she has asked a time or two since I’ve been home. I wonder if I’ll be able to just cruise on out and be done with it. The morning will be the test, I think.

I am so thankful to the Lord for helping things go so well. And also for all the good friends and family he has blessed me with, who have helped me and prayed for me through it all. May all our prayers be answered with a benign final result.

Surgery today

I wasn’t thrilled when I got the call from the hospital yesterday telling me I should arrive for surgery at 12.  That’s 12 noon.  With nothing to eat or drink since midnight the night before.  The nurse who called told me that if I wanted, I could get up before five and have some dry toast and black coffee.  I elected to sleep in.

This has made me think about how entitled I feel when it comes to my three meals a day.  How abnormal is that?  I was actually starting to get irritated because I wouldn’t be able to eat this morning.  In reality, this brief moment of being a tiny bit hungry is good for me.

Praise be to God who has provided so bountifully for me all my life!  May he be with me today, and may he guide my doctor as he works on me.

My awesome Aunt Sharon is coming down to stay with the kids.

I have almost crossed off everything on my “to do before surgery” list.

I have slathered On Guard (diluted with fractionated coconut oil in a roller bottle) all over my neck area multiple times a day in an effort to wipe out any unfriendly germs living in the area to be operated on.

I am defying my NPO order by sipping on a tiny splash of water right now.

See you on the flip side.

Surgery Scheduled

Rusty went with me to my follow-up appointment with Dr. B on Tuesday.

Dr. B is going to take out the right side of my thyroid on June 7th. That’s a FRIDAY! Which means that Rusty might only have to take off the day of surgery, and maybe no one will have to come and help me.

My friend, A, has been telling me how easy her surgery was (she had the same surgery I am scheduled for), how little pain she had, and how quickly she was able to do her normal activities. Praying for a similar experience.

Dr. B does the “minimally invasive” version of the surgery, which should mean a smaller scar. They will also do initial pathology while I am in surgery, with full pathology completed afterwards. What this means is, there is a possibility they could catch a cancer before they close me up, enabling them to do a complete thyroidectomy without a second surgery. What I have read is that this pathology procedure catches about half of the cancers. The other half would have to come back for a second operation.

I was pleased that Dr. B didn’t think I needed the left lobe out at this point. He said that it looks “almost” normal. I just REALLY don’t want to be thyroid-free if it isn’t necessary.

He said that he didn’t think I will need an endocrinologist going forward, but if he thinks I am going to go around with less than half a thyroid in my neck and NOT see an endo, he has another think coming. :) I talked to S at Bible study last night, and she likes her endo a lot. She suggested I might want to see an endo before having half my thyroid out, but I’m pretty sure that no matter who I see, this is the path in front of me.

Ok, so I feel like we are doing the right thing–taking the best next step.

However, is it ok to say that I am still a little disappointed in my care? Here’s the part where I get whiny. If you would like to skip the rest of this entry, I promise I won’t get my feelings hurt. :)

Whine #1–The pathologist who looked at my FNA samples only made two slides per sample. At some labs, six slides is considered a minimum. Maybe that won’t make a difference, but two just doesn’t seem very thorough.

Whine #2–When Dr. B sent my FNA samples off, he didn’t include ANY clinical history (i.e., sample is from a mixed solid/cystic nodule measuring 2.8x 1.3x 2.9 cm), which is supposed to help the pathologist make a more accurate assessment of what he or she is looking at.

Why I am not going to make a fuss about this: Both nodules are coming OUT in less than a month. So if they’re baddies, they’ll be gone and they can find out for sure after they are out. A Hurthle Cell Lesion has to come out anyway.

A couple more interesting factoids about Hurthle Cell Lesions:

I have read conflicting reports that their malignancy rate is somewhere between 13% and 35%. That’s a pretty big range. I am banking on being under 40, having a lump smaller than 4 cm, and having (possible) Hashimoto’s thyroiditis. (Dr. B says it can’t be diagnosed by biopsy–but that’s not what I’ve read. Yet another reason to go see an Endo. Dr. S, here I come! After all this surgery hullabaloo is over.)

Interestingly, lumps diagnosed as Hurthle Cell Lesions that turn out to be malignant often are not Hurthle Cell Carcinoma. They can be any of the other kinds of Thyroid cancer–Papillary, Follicular, etc.

Enough for now. I am going to try REALLY HARD to quit thinking about this whole thing until my surgery gets here.