Category Archives: Questions

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.”

Giving Thanks

I heard from M a little while ago.  Her melanoma surgery this morning was a complete success!  She said it was a “very superficial cancer.  No treatments or lymph node biopsies.”  Praise the Lord!

I am ready for my appointment tomorrow.  Questions printed and emailed.  (Dr. B’s quick response was, “Lots and lots of good questions,” maybe with the emphasis on “lots and lots?”)  Childcare lined up.

And here, for your amusement, are pictures of my neck!

Now you see it (swallowing):

Lump visible when swallowing 5-5-13

Now you don’t! (not swallowing):

Lump invisible 5-5-13

My AMAZING Sister(-in-law)

Sarah just called to offer to come and help after my surgery. Isn’t she wonderful? She also has an INCUBATOR with guinea eggs in it!!! I am so jealous!

Just made a bulleted list of questions to take to my appointment. Feels better to have them down. I know I can add to the list if anything else occurs to me. I think I’m going to email Dr. B one or two days before and ask if he would like to have my questions ahead of time.

Plans, Questions

I got Eleanor a CD player for her room today, step 1 in my weaning plan. I’ll work on that…sometime soon. :) I have two different things to try. One is a “Toddler Sleepy Time” Hypnobabies track. The other is just plain, old-fashioned lullabies.

I found out today that M, a friend of mine,has been diagnosed with melanoma and is going to have some kind of surgery related to that. Yet another reminder that I am not the only one with trouble in my life.

I called today and got my follow-up appointment changed to Tuesday, May 7th. That way, I don’t have to wait as long (yay!) and Rusty will be able to go with me. I want him there since we will be talking about surgical stuff.

I looked up oils that are supposed to be good for Hashimoto’s. Looks like lemongrass is #1, and also myrrh and frankincense. So I made myself up a little blend. I am starting to like this blending thing. I think it’s so interesting that I have been so drawn to lemongrass already—I was just telling K the other day that it was one of my favorites. There are many people who think that our noses will usually lead us to what we need most.

I’ve also been thinking about what else I can do to decrease the inflammation in my body. Of course, the number one thing probably needs to be cutting out sugar. *sigh* I am NO good at that. But I have known for a long time that I needed to do it. I am able to do it for a while, and then I fall off the wagon and find it SO hard to get back on. But this is now not just a matter of diabetes prevention (which should be enough), but also taking care of my thyroid. Especially if I’m only going to have half of one.

One thing I really don’t want to think about is Hurthle Cell Carcinoma. It was easier to contemplate Papillary Carcinoma cheerfully because it seemed SO curable—more like something that would change my summer than something that would change my life. Having HCC is more like having…cancer. It is harder to treat, usually resistant to RAI, and tends to metastasize to places like bone, lung, and “central nervous system.” Yuck. The good news is that it seems much more common in people older than me (and more aggressive for them, too). I hope it is just a bunch of Hurthle cells hanging out in my thyroid, just for fun. They are more the Rook-playing, movie watching crowd than the kind who go out knocking down mailboxes with baseball bats and forking people’s yards.

So should I ask Dr. B for my complete report? I feel like I already know what I need to. I think I would obsess more over the details. And STILL I am tempted to ask. But I am not going to, at least not until my appointment. I am working on my list of questions, though:
1—Which nodule had which diagnosis?
2—Where will the excised half of my thyroid be dissected and analyzed?
3—Why didn’t we biopsy at least the largest nodule in the left side of my thyroid? Should we do that before surgery, in case it turns out that I really do need to have my left lobe removed too?
4—If I need RAI, do they do that at our local hospital?
5—How long is recovery from surgery?
More questions to follow, I am sure.