Category Archives: Anxiety

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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Message Boards and “The Big C”

I have been more emotional the past few days.  Not bad over all, but I have had a few moments when I could not hold back the tears.  Maybe it’s all part of the process of coming to grips with this thing.

I think it kind of started when I signed up on the ThyCa message boards over at Inspire.  Message boards can be very helpful–they give you a chance to talk to other people who are dealing with the same thing you are.  I remember when I had my second miscarriage, going on message boards and talking to other women who had gone through the same loss was helpful for me.  It’s good to be able to ask if your experience is normal (i.e., common to many), or what to expect, etc.

One of the problems with topic-specific message boards is that they are inherently unbalanced.  Occasionally people come on to share good news, but generally, people post when they are worried or upset.  It’s good that they have a “safe place” to go for reassurance, among people who understand.

But as a reader of message boards, you are exposed to a disproportionate number of negative experiences–In the case of thyroid cancer, to make a specific example, you hear a LOT about people who are facing metastasis, problems balancing their thyroid hormones, doctors who are uncooperative, family and friends who don’t understand what they’re going through, and so on.  In other words, it can be very easy to get the impression that for most people, the thyroid cancer journey is really rough.

So I was on the boards, and I read about several people having “lymph node mapping” prior to their surgery.  Basically, it’s a detailed ultrasound of your neck looking for suspicious lymph nodes prior to surgery so that you can have them out the first time around rather than having to go in for another surgery later.

I looked into it–I have not had a formal “lymph node mapping” done.  I know That Dr. B looked at my lymph nodes a little on ultrasound when he did my FNAs, And I know that he inspected my “central compartment” lymph nodes during my first surgery and didn’t see any that looked worrisome.

So I emailed him about it.  I am trying not to abuse my email privileges with Dr. B.  It’s so rare to find a doctor who INVITES you to email him with any questions you have.  I don’t want to make him regret the offer.

Basically, he said what I already knew about the inspection he had already done, and he added that he would take the lymph nodes in front of my trachea for sampling, which he said would be considered “more than adequate” in my case.

What he meant by “in this case” is that I had a very small carcinoma.  At 1.2 cm, it is barely large enough to call for the removal of the other lobe (>1 cm is the guideline), and is therefore considered, at least right now, to be low-risk.

And he said something else, which I already knew.  He said that “we know that we over-treat these small thyroid cancers most of the time.”  And this lead me to thinking again about how much I really don’t want to lose the rest of my thyroid.

So here’s the picture, people.  I am, on one side, almost in tears over having the rest of my thyroid out and being dependent on medication for the rest of my life (not to mention, thanks to the message boards, very concerned about how difficult the adjustment will be to life without a thyroid), and on the other hand, anxious beyond measure that my surgeon has not inspected my lateral lymph nodes for possible metastasis. (Which is what ThyCa, the NCCN, and the ATA all recommend–I’m not crazy for wanting this.)

[By the way, here’s a picture of the different lymph node regions of the neck, if you are wondering what on earth I’m talking about:

F1.medium

Dr. B was saying that he always thoroughly checks out the central compartment (VI), whereas guidelines recommend ultrasound inspection of regions II, III, and IV as well, from what I have read.]

Ok.  So let me sum up–I want to both ramp up AND scale back my treatment.  Which is IRRATIONAL, people.

So here’s my action plan.

  • “Unfollow” all the messages I’m currently following on the ThyCa message boards so that I don’t keep getting emails encouraging me to check in.
  • Generally, try to stay away from thyroid cancer boards, blogs, etc., at least for a while.  (Not necessarily including this one–I am finding it very useful to “talk” through my issues here.)
  • Pray that God will help me accept the loss of control (or at least the illusion of control) posed by having my thyroid gone.
  • Remind myself, repeatedly, of all the reasons why it’s better to have it out.
  • Let Dr. B do his thing–which I do believe he’s very good at–and not worry about the rest.

The best thing to come out of the message boards, for me, at least, was a comment by one of the posters who was trying to encourage someone with a new diagnosis.   She said,

“For me, I have had to learn that cancer is my little “c” and Christ, who I lean on when scared, is my big “C”!

So I am going to remember that Christ is the only “Big C” in my life.  And he can totally handle the “little c.”

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.

 

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.

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.

Note to self:

You can read and re-read all the journal articles about what percentages of Hurthle Cell Lesions are cancerous and what percentage are not.  You can memorize all the factors that predict whether a HCL/N is cancerous or not.  But NONE OF THAT can tell you whether your particular lump is malignant or not.  Only surgery and a good pathologist can make that determination.  YOU ARE JUST GOING TO HAVE TO WAIT TO FIND OUT. STARING AT SCHOLARLY WRITE-UPS ON YOUR COMPUTER SCREEN IS JUST GOING TO GIVE YOU A CRICK.  SO GO TO BED ALREADY.