Looking worse, feeling better

My bruising is pretty bad. It’s sliding down my chest. Check it out (day 4, if you were wondering):

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But on the other hand, I feel almost normal. I am having very little pain. What I’m mostly experiencing is a mild burning feeling around my incision. That sounds scary, but it doesn’t feel or look inflamed.

My energy is still not all there. If I get up and “do” for a few minutes, I will start to feel just a little bit clammy and woozy. That’s my cue to resume my station on the couch. But I am doing more today than I did yesterday. And I expect to be doing even more tomorrow. It looks to me like that one-week recovery I keep seeing quoted everywhere may be right on for me.

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:

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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.

Vitamin D, Naps, and Nursing

There may be a connection…but that’s not where I’m headed. :)

First…I got my Vitamin D levels checked after learning that Hashimoto’s is linked with low Vitamin D.  My levels came back as 23.3 ng/mL, which is considered “insufficient.”  Deficient would be anything below 20, and “good” levels are anything from 30-100.  So I got me some good Vitamin D3 supplements to take. I found a good deal on Vitamin Code D3 with probiotics on Amazon. Is it possible that I feel better after only 3 days?

Weaning is….going.  We’re making some progress.  The beach idea did NOT work out.  It was not pretty, people.   But yesterday I just decided that we were GOING to do this.  I picked out four books that I thought she would like and told her they were “nap time” books.  I basically tried to mimic her successful bed time routine.  We read the books, then I put her in bed with her lullaby CD on, and I sat on the end of her bed.  Day 1, Wednesday, it took 2.5 hours from the time we sat down to read until she fell asleep. I was DETERMINED not to leave that room until she fell asleep.  Day 2 was today, and it took one hour from start to finish. I am praying that it continues to get easier over the next several days.

I need to decide if I should cut out her morning nursing before surgery, if I should let surgery be the thing that ends the morning feed, or if I should continue it for a little while after surgery.

Part of making that decision will be how well she is doing with the change in her nap routine over the next few days.  I also need to find out how soon it would be safe to nurse after having general anesthesia, and how pain meds will affect things too. I don’t want Eleanor to be stressed by weaning too fast at the same time that her access to me is going to be limited by my surgery and recovery. Also, if I quit the same day as my operation, I will probably have to deal with engorgement for a day or two at the same time that I’m recovering from surgery. Not fun.  So I have lots of factors to consider.

Tomorrow is one week until surgery.  Y texted me and asked if she could put it in the church bulletin on Sunday.  My first though was, that’s kind of early, isn’t it?  Then I realized it was going to be less than a week before my surgery.  So I let her do it.  It really is almost here.

Trying to stay research-free

We are at the beach for an extra long weekend getaway, which means I am writing this on my phone.  I have been trying really hard to stay research-free, with mixed success. The past few days have been good, and I have made a personal vow to myself not to look up anything related to my thyroid issues at least while we are on vacation.

That said, I did go on a PubMed binge several days ago (before vacation), and I learned a few more things that I wanted to make note of here.

One is that “hemosiderin laden macrophages” can occur in HCC. (ETA: Here’s the article.).  So, in terms of my Hurthle cell lesion, it doesn’t, as I previously believed, matter if my macrophages have hemosiderin or not.

Also, I had previously read an abstract that listed “absence of inflammation” as an increased risk factor for malignancy in Hurthle cell lesions. I thought this was a food sign for me, since I know my thyroid has inflammatory cells (lymphocytes) in it. But I found the full text of the article, and what “absence of inflammation” meant in their study was an absence of inflammatory cells within the lesion. Well, as far as my FNA report goes, there aren’t any inflammatory cells in my Hurthle cell lesion, so that is no longer a factor in my favor.

I feel like these two findings tip the needle a little away from the benign side, but not necessarily more towards the malignant side, if that is even possible or makes sense. I’m not sure it does.

The fact is that I feel mostly like I will have the surgery, get a benign diagnosis (maybe including Hashimoto’s and/or multi-modular goiter) and go on my merry way. I know that things may go a different direction, and I am trying to be prepared for that possibility without dwelling on it or inviting it into my life.

Weaning is still not going great. We are going to try to use the change of routine during this vacation to eliminate nap-time nursing.  Then we’ll be down to just first thing in the morning.

Later.

Mama the Grouch

I think Rusty is worried that I’m going to be Grouchy Mommy (or possibly worse, Weepy Mommy) after my thyroid surgery.  He keeps making lighthearted comments to that effect.  One example:  I was telling him that I was thinking about giving up coffee. He joked something to the effect of “No coffee AND no thyroid? Is that a good idea?”

Now, it’s very possible that he’s just trying to keep things light.  However, in my experience, there is always some truth at the bottom of humor.

To be perfectly fair, I am a little concerned about how I will feel with only half a functioning thyroid, and that half possibly impaired by an autoimmune process.  But I feel like with a little thyroid hormone replacement, I will probably be able to sort it out.

Google remission for several days now.  I feel much better.  Just waiting for June 7th.

Macrophages

Ok, so I couldn’t leave well enough alone.  I HAD to keep on researching.

Let me back up.  Here is the word-for-word write up of FNA of the the larger nodule on the isthmus of my thyroid:

Hurthle cell lesion–see comment

COMMENT:

The specimen consists of numerous Hurthle cells and fragments of Hurthle cell epithelium, with a population of macrophages.  The differential diagnosis includes Hurthle cell change in a background of thyroiditis or a hyperplastic colloid nodule versus a Hurthle cell neoplasm.  Clinical correlation recommended and follow up as indicated.

So that actually didn’t sound too bad, especially the idea that it could be “Hurthle cell change in a background of thyroiditis.”

But I couldn’t leave well enough alone.  I wanted to know what, if any, meaning the macrophages had.  I had some vague memory that macrophages were immune cells, maybe a type of white blood cell?  I knew that certain cell types like lymphocytes tended to point towards a benign nodule.  So I went looking, using “macrophage” as a term in combination with “Hurthle cell lesion,” “Hurthle cell adenoma,” “Hurthle cell FNA,” etc. ad nauseum.

I found one case study in which two different patients had similar FNA samples that included Hurthle Cells and macrophages.  One ended up being a Hurthle Cell Adenoma (benign) and the other a Hurthle Cell Carcinoma (malignant).  So I know that macrophages could be present in either.

Then, for whatever reason, I searched for “macrophage thyroid cancer.”  From that I learned that macrophages are generally present in tumors (benign or malignant) and that a certain type of macrophage, known as a Tumor-Associated-Macrophages can sometimes make up up to 50% of a tumor, and that their actions tends to help the tumor grow and spread.

I found this article.  The title alone almost sent me into a panic attack.

I had a little freak out moment, feeling SURE that the “population of macrophages” meant my nodule is FOR SURE cancer. I have reeled it in a bit, and I’m now back to the recognition that “tumor-associated” doesn’t have to mean “cancer-associated,” and that, once again, I cannot find out if my nodule is cancer or not by doing research.  Still, I am not comforted.

I’ve also learned that “hemosiderin-laden” macrophages are usually associated with benign tumors; they “digest” red blood cells when a colloid nodule (always or almost always benign, from what I understand) undergoes “hemorrhagic decay”.  My FNA report didn’t say whether the macrophages were “hemosiderin-laden” or not.  So I really have no idea where I stand.

Before I made my macrophage discovery, I sent Dr. B an email to ask how long surgery should take (45 minutes to an hour)  and where pathology would be done (right here in our local hospital).  I have now looked up the pathologists on staff and am considering sending them gift baskets the day before my surgery, to make sure they do top-notch work for me.

Also, my sweet, sweet Aunt Sharon has said that if I need her, she can come for a few days.  We are going to play it by ear to see how things go.  And UK is in Uganda, preaching.  Love it.

Ok, I REALLY, REALLY need to forget all about this until maybe a few days before June 7th!  Although, I think it would be good to work on some things that would be helpful to accomplish before surgery. I am going to put my “folder” (containing my lab reports, surgery instructions, etc.)  somewhere out-of-the-way.

Should I Google “Hashimoto’s macrophage,” just to make myself feel better?  You see how sick I am?

ETA:  I did Google some more.  I am back to the realization–full realization, not just what I’m telling myself to think–that macrophages don’t mean I have cancer, and very well could point to a Hurthle Cell Lesion associated with Hashimoto’s.    Must.  Stop.  Googling.

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.