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.

 

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Out of the Woodwork

It’s really amazing how many people have problems with their thyroid.  It reminds me a lot of when I was trying to have my children and had multiple miscarriages along the way.  It was astonishing to me how many people came up to me and said, “You know, that happened to me, too.”  I’m finding the same thing happening now; it seems like everyone knows someone who had thyroid cancer.  Plus I know a LOT of people in person that have other thyroid problems.

For example, while I was on the phone with my friend K talking about my diagnosis and what I was going to do next, another friend of hers texted her and said that she’d been diagnosed with a large thyroid nodule and her doctor wanted to take it out because there was a good chance it was cancer.  So now I have connected with her–my new friend R.

My Dad’s cousin Eugene is having a thyroid lobectomy this week for thyroid cancer.

My Dad emailed me to tell me that my Great Aunt “Teen” (Christine) had surgery for thyroid cancer a LONG time ago.  It’s funny, because growing up I knew she’d had surgery on her throat and that her voice was affected.  I might have known it was for cancer, but I had forgotten all about that until Dad reminded me.

And it seems like the list just keeps going.  Mostly the moms or aunts of my friends, it seems.

So I’m in good company.

I decided yesterday to go “live” with my blog.  So I guess I’m yet another one of those bloggers I wrote about a few weeks ago who has papillary cancer like everyone else.  Sorry Hurthle Cell, Follicular, Medullary, and Anaplastic Carcinoma patients out there.  Who knows if anyone will read it anyway.  As of right now, I have NO intention of sharing the blog with my friends.  I’m doing this mostly as a journal, but also in case I can be of ANY encouragement to someone else out there who’s found themselves on a thyroid journey of their own.

Oh, and guess what? Eleanor is weaned.  Saturday was the day after my diagnosis.  She woke up early, and Rusty, still taking care of me in my post-surgical and post-diagnosis state, got up with her and fed her breakfast.  When I got up a couple of hours later, she was watching TV, but she immediately ran over and asked if she could nurse.  I said, “Let me go get some coffee.”  I kept putting her off that way to see how far I could push it (“Let me eat some breakfast…”).

Then I pulled out the big guns.  People, I got out my pedicure supplies.  I didn’t say anything to her, I just started painting my toenails.  Immediately, Eleanor propped her little tootsies up on the table and said, “I want to paint MY toenails!”  I asked her if she was ready to stop nursing and she said, “Yes!”  So I painted her toenails purple, and we went and showed Daddy, who knew full well what this meant.  He went right along with me and told her how pretty her toenails were and how she looked like such a big girl.  We went to the store and got cupcakes and a Dora balloon, and party hats and paper lanterns and a present.  We came home and had a “no more nursing” party, and sang, “No more nursing for you, No more nursing for you, You’re a Big Girl now Eleanor, No more nursing for you!” and had a grand old time.  And we are DONE.

She has asked a few times since then to nurse but is easily put off when I suggest taking her balloon and presents back to the store.

Being done is good.  I am hoping I will not need RAI, but I need to do some research on how long after weaning it’s safe.  I do not want radioactive iodine accumulating in any traces of milk my body might still be making.

There is so much more I want to talk about, but there are other days ahead, Lord willing, and this entry is already long.

It’s the good kind….Really!

“The Good Kind” is a catch phrase/byword in the thyroid cancer world.  Thyroid cancer (thyca) in general and Papillary Thyroid Carcinoma (PTC–which makes up about 75% of thyca) specifically are known as “The good kind” of cancer or, “if you’re going to have cancer, that’s the kind of cancer to have.”  There’s a reason for that….the survival rate for PTC is better than just about any other kind of cancer out there.  Some question whether it should really even count as cancer.

I know that some people hate this generally optimistic feeling about thyroid cancer, mostly because they feel that it minimizes their fears and the difficulties that treatment involves for them personally.  Also, there are some types of thyca that are not nearly as easy to treat as PTC and whose outlooks are not nearly as favorable.

So today I found out I had Papillary Thyroid Carcinoma, not Hurthle Cell Carcinoma, as I feared. And my first reaction when I saw that lab report was relief.  Because I know that PTC actually is “the good kind.”  Because HCC was really a scary thought for me.

Wanna know the crazy part?  The PTC was in that ugly looking nodule with the calcifications, the one that I originally “knew” had to be cancer.  The one that tested benign on FNA and frozen section.  The Hurthle cell lesion was just a big lump in a lumpy gland.

I guess that’s my only real whine at this point.  Why couldn’t we have just found it on the first biopsy and gotten all the surgery over to begin with?

Possible reasons:

  • I needed, for some reason, to not go around knowing I had cancer in my body for that period of time from FNA to first surgery–It was better to find out after it was out.
  • I needed time to work on a gentle weaning process for Eleanor.  More on that later…
  • I needed to be really afraid of having HCC so that PTC wouldn’t seem bad at all to me.
  • Something I haven’t even thought of yet.

Whatever the reason, I am going to trust my journey because I trust my Guide.  He knows what I need and what I can handle.

He answered my prayer to be spared HCC. He let me have a big benign lump in a visible place so that I could find the cancer that was hidden farther back in the gland.

I embrace the label “The Good Kind,” because this is NOT my mother’s cancer.

Ok, so here are the details:

  • PTC Nodule was 1.2 cm.
  • It was completely encapsulated.
  • It had no vascular invasion.
  • It was widely invasive of the capsule. (So glad it is O-U-T!)
  • It looks to be unifocal and confined to the thyroid. (That would make it stage I. This could change after the findings of the 2nd surgery.)
  • Also, I have Hashimoto’s Thyroiditis (or at least I do for the next few weeks.  I think surgery will “cure” me!)

Here’s the plan:

  • Have a great VBS.
  • Go to camp and have a GREAT time!
  • 7/11, have the rest of my thyroid removed.
  • recover
  • meet with the nuclear medicine doctor and talk about whether or not I need RAI.

Somewhere in that plan I need to include finishing Eleanor’s weaning.  Rusty got up with her this morning (bright and early) and fed her some breakfast before I made an appearance.  She has asked me to nurse a couple of times, but I have been able to put her off so far.  We’re going to see how far we can go with this.  I may go get my nail polish in a minute and work on my own toenails, and see if she wants me to do hers.

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:

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

image

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.