Tag Archives: fear

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.”

Advertisements

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.

 

One day closer to follow-up

I still have not started weaning Eleanor. Oy. I dread the tears, the sadness. Must start tonight.

I am combating “irrational” anxiety/irritability today. Using my oils. Peaceful Child, Clary Sage. They are helping. I don’t know why this happens every time I approach an appointment or the due date for test results—although from reading other people’s stories, it is pretty normal (although I hate to think of feeling like this for the next four days). Still, I want to have better control of my emotions. Especially since I am working on Silas so much to help him control his emotions. He is very volatile these days. I think he’s turning into a teenager. Double Oy.

I emailed my childbirth class student about our class that is to start on Tuesday night and gave her a heads-up that I will probably be having surgery in the next few weeks.

For some reason Elliot has cut a chunk out of the front of his hair. Now that he’s seven.  Isn’t that kind of thing usually reserved for toddlers?  (Don’t get any ideas, Eleanor!) I never know what that child is going to do. Time for summer buzz cuts.

Ok, I am going to say this, because I think it will help me to get it out. Here are the two things I feel like I cannot deal with: 1—having really bad cancer—anaplastic, or bad metastases—where it looks like I won’t live long. I feel like I cannot leave my children motherless. And 2—having my whole thyroid taken out and finding out that there was no cancer in it after all, and I would be dependent upon a daily medication for the rest of my life for nothing. Either one of those situations would make me FURIOUS. I feel like anything else is manageable. Even metastatic cancer that is controllable for the next few years, I think I could deal with. May God have mercy on me and protect me from those “worst-case” scenarios.

One Week Obsession Remission…is over

So I have been in obsession remission for several days, and it’s been pleasant. I have been calm. I still feel fairly calm, but I can feel my obsessive tendencies creeping back up on me as my follow up appointment approaches. (T minus 6 days.)

I have a lot on my mind. I have read that when a partial thyroidectomy is indicated, but there are multiple nodules on the other side, the surgeon will often recommend doing a total thyroidectomy (TT). So I am thinking about this. Dr. B’s email did indicate this might be a possible course. Here’s the breakdown: I will be VERY unhappy if I have my whole thyroid out and they do all their dissections and pathology and find there is no cancer in there anywhere.

On the flip side, I don’t love the idea of having half out and then having to have the rest out in a second surgery. Also, I am not happy with the thought of totally ignoring all the nodules (how many are there, anyway?) on the left side. So here’s my thinking. Can we do FNA (Fine Needle Aspiration–what I had done on the other nodules) on at least the largest and/or most suspicious on the left side before surgery? ‘Cause that might make our course more clear. And if I only end up having half out, I’m still gonna be wondering about the lumps in that other side.

{Side note: Silas is practicing his memory verse, “Whenever I am afraid, I will trust in you…” Such good advice!}

Ok, so here’s something else: Am I going to be able to teach my childbirth class that starts next week? If (When?) I have surgery, how long will it take me to recover? This class has very little wiggle room built in because of the couple’s due date. Funny how I was really wishing for more couples to sign up; now I am kind of glad it’s just the one. So should I contact them now and give them a heads-up about the possibility of having to alter or cancel the class? Or should I wait until after my appointment when I have more info—which will be the same day as the scheduled first class. That’s one of the things I’ve allowed myself to look at online…what to expect after surgery. Looks like I may need to borrow a recliner. Recovery time seems variable, but for most at least one week before working again. Of course, I don’t have any idea how soon he will schedule surgery. If he plans it for mid-July, I have nothing to worry about–except that my recovery will run into book rush time.

Would it be really terrible to ask Aunt Sharon to come help me, like she did after Eleanor was born? I feel like I might need some assistance. One of those times I miss Mom, for SO many reasons.

Also, what about lymph nodes? Has anyone looked at these on ultrasound? Will Dr. B be on the lookout for funky looking lymph nodes in surgery?

Weaning. Is going to be. Really. Hard. I need to start…..tonight. May the Lord help me. I just don’t want things to be too difficult on Rusty if I am unable to help with bedtime for a few days after surgery. And if I do somehow end up needing RAI, I really, really need to have my breasts ready for that by being empty of milk.

And at the extreme end of my hysteria is this: I have a very faint sensation of having a lump in my throat. Has it been there for a while, and I notice it now because I know there’s an actual lump there? Or is my lump growing and starting to press on my windpipe? Or is it just in my mind because I am feeling paranoid? You won’t tell anyone how completely insane I’m becoming, will you?