Category Archives: Gratitude

Moving On

I can’t believe it’s taken me a week to sit down and update since my post-op follow up appointment!

I’ll start there…

First of all, the path report on the left side of my thyroid was cancer free.  Woo hoo, right?  So was the lymph node that he removed.  Dr. B offered me the option of a referral to the nuclear medicine doctor, but he and I both felt that I didn’t really need RAI ablation/treatment, so we are just going to skip it for now.  Double woo hoo!

The other side of my thyroid did have some weird stuff…for one, it had a LOT of nodules, which I knew, and “hurthle cell change,” which I was pretty sure they would find.  They also found some “giant” cells, which can be associated with Hashimoto’s (which I have–or had?), but also has an association with PTC and even Anaplastic cancer.

I was a little afraid ahead of time that if no cancer was found in this second surgery that I would regret having it done….but I don’t.  I just know with all the weird stuff that was in there that I would have required a lot of monitoring to stay on top of it, and I feel, myself, that some of that would have morphed into more cancer at some point.  No, I’m just glad it’s out, and that we know for sure there wasn’t any cancer there.  If it had stayed in there, I would have wondered forEVER.  I have this feeling like I am “clean” now.

Dr. B does want me to have a WBS (Whole Body Scan–they use a small “tracer” dose of RAI) to check for any possible metastasis, but I get the sense that it is just kind of a formality, just to make extra, extra sure. That will be at either 6 months or a year, I can’t remember which.  Beyond that, I will have my thyroglobulin  levels tracked.  (That’s a protein only made my thyroid cells.)  As long as they stay stable, it’s unlikely that cancer has returned.  And I will also have periodic neck ultrasounds to make sure there’s nothing abnormal springing up in the thyroid bed.  But that’s it.  Nothing more than a low-level annoyance, if things go as expected.

I am so, SO thankful that God has seen fit to give us a favorable answer.  I look around at others who are going through so much more right now–one college friend who just had a kidney transplant, another whose four-year-old daughter is in a battle with leukemia that could last for years, another whose younger brother has just learned he has stage IV, terminal stomach cancer.  I feel like I have gotten off pretty easy.

I am also SO grateful for all the kindness we have been shown.  I have gotten so many cards from people.  Our brothers and sisters in Christ are STILL bringing us food to help us out.  Jessica stayed with me overnight in the hospital AGAIN.  I could go on and on.  I LOVE being part of God’s family.  His children are the best siblings I could ask for.

I am also doing pretty well so far on my thyroid medication.  More about that next time!

Today is Mom’s birthday.  I bought some Mayfield Brown Cow Jr. ice cream pops at Publix to celebrate.  She used to always have them when her grandkids–my kids and Nathan’s–came to visit.  She called them “Cow Bars,” and that’s how my kids know them now.

I miss her SO much, but in many ways, the intense, sharp pain of her loss has faded.  She’s been gone just over three years now.  Happy Birthday, Mom!  I raise my Cow Bar in salute.

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At home, doing well.

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My incision, the morning after surgery. Second verse, same as the first, right? Once again, Dr. B appears to have done a great job.  I especially appreciate that he went looking for lymph nodes, even in the lateral areas of my neck. He found one on the left side, which he said he wouldn’t have thought anything about if I didn’t have cancer. I am thankful that he went to the trouble of looking carefully.

I have had no problems with my calcium levels, Praise God.  My pain at the very first was a little more than last time, but now is about the same. I am able to be up and moving about the same amount as before, which is not much yet.

Dr. B went ahead and started me on 100 mcg of Synthroid because he doesn’t think I will need RAI. (Sounds good to me!) He says he will check my TSH in 3 weeks to see if I am in the ballpark, or if I need to have my prescription adjusted. I was pleased to learn that he aims to keep his thyca patients with a TSH around 0.5.  That’s what I was hoping for.

My follow up is Thursday, when we’ll hear the final pathology report on what they removed in this surgery.

Aunt Sharon got here today in time to help Rusty get the family off to church.  She brought a car load of Krispy Kreme doughnuts, because that’s just how she rolls. :) I am so glad she’s here. Rusty has been doing a phenomenal job taking care of me and the kids, but its all a bit much, and I know it is overwhelming to him. This will ease his burden a good bit.

How to talk about tough times

I just discovered a blog by a young woman who discovered she had thyroid cancer and had to defer her first year of law school because of her surgeries and treatments.  I’ve read through pretty much the whole thing…at least since her cancer diagnosis, because I like hearing the whole story.  (That’s typically what I do when I find a blog that resonates with me.)  I’ve posted a link to her blog in the sidebar, and I will be following her story with interest. Her name is Lydia Joy Ness.

I find her God-centeredness inspiring.  You can tell in her writing that her spirituality is real, that she is truly seeking to know God.

As I read her blog, I strongly identify with her as she wrestles with the loss of control over her life and how the label of “cancer” will change the way people view her.  (The reality is that none of us are in control in the first place.  I just have to come to face that more fully now–that’s the battle I’m fighting as I try to accept being on a daily medication for the rest of my life just to stay alive.)

Another thing she writes about a great deal is the meaning of suffering and our approach to suffering as followers of Christ.  One thing she brings up is the importance of being real about our suffering–letting others see it and not just putting on a brave face, and how difficult that can be because of pride.  I have been thinking about this, and I agree with her.  By hiding our experience from others, we deny them the chance to help us, and we also deny people the chance to benefit from hearing our story. Part of this, for me, is finding a way to share my experience without being a complainer.

I am going to work on developing this through this blog and in my relationships with others in real life.  I know I have a tendency to put on a brave face to protect others.  I don’t want my friends to suffer anxiety, or in this specific case to overreact to a diagnosis that includes the “C” word.

When you talk about cancer there is an immediate visceral reaction, but in reality, there is a very wide range of seriousness with various types and stages of cancer.  I know some cancer survivors that had sub-centimeter lumps removed and that was it.  I don’t want to minimize the anxiety they experienced while waiting for test results or undergoing surgery, or the implications of a lifetime of follow up–which is what I am looking at right now.  On the other end of the spectrum are people like my mom, who went through chemo and surgery and more chemo and more surgery and radiation, and took supplements, and tried juicing and raw food diets, and had more surgery and more radiation etc, etc, etc, and still died in suffering.

My cancer is most likely towards the first end of the spectrum.  It’s not without its anxieties and pain, but most likely it will be a low-level, not-too-scary experience.  The words “hassle” and “irritant” keep coming to my mind.  Anyway, I’m off on a tangent.  My original point is about being real and not pretending everything is fine when it’s not.  And for me, trying to find the balance between being real and being a whiner.

[Just an aside–I don’t consider myself to be “suffering” right now.  There has been a certain amount of physical and mental stress associated with this experience, but I know that my burden has been very light, especially when compared to what I see and have seen others going through.]

Another thing she talks about is trying not to look at suffering through the lens of what good comes out of it, at least not always.  She calls seeing-good-out-of-evil the “Oprah” approach. (She references a book, Glorious Ruin, by Tullian Tchividjian for a lot of these thoughts.)   What she’s saying is that suffering is a result of living in a broken world–a world that desperately needs Christ.  She says we should call it what it is–admit that suffering is awful and it hurts. I have been trying to digest what she says on this, and I think she has a good point.  Suffering is awful.  It does hurt.  And it is because we live in a corrupted, broken world that needs saving.

However, I would say that even taking that point of view is, by definition, finding something positive to come out of the negative.  In our suffering, we are pointed to Christ.  That’s a good thing.  We need Christ because we cannot make things better here, because we don’t have control of our lives, because we are helpless and needy.  Coming to that realization is good.

I am also put in mind of those powerful, powerful words in Romans,  “And we know that all things work together for good to those who love God, to those who are the called according to His purpose.For whom He foreknew, He also predestined to be conformed to the image of His Son, that He might be the firstborn among many brethren.” (Rom. 8:28-29)  That’s not Oprah.  It’s scripture.

I believe that “All things work together for good,” means that He is working on me, to make me “conformed to the image of His Son.”  He uses whatever experiences come to me in this broken world to shape me into who he wants me to be. “He who has begun a good work in you will complete it until the day of Jesus Christ.” (Phil. 1:6)  I have already seen how going through the loss of my mother has unlocked some things within me that I am able to use in His service.  I expect this experience to do the same. 

I don’t really mean this as an argument against Lydia’s reasoning.  I think, essentially, that I agree with her point and she would probably agree with mine.  Just a little different take on it, maybe.

Now I need to go have a few non-cancer-focused days.  I need to stay off the message boards, be a mom, do my work at home, help my kids with their schooling, and get ready for Vacation Bible School and Rustic Youth Camp.

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.

 

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.

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 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.