Category Archives: Family

At home, doing well.

image

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.

Advertisements

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.

 

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.

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.

Surgery today

I wasn’t thrilled when I got the call from the hospital yesterday telling me I should arrive for surgery at 12.  That’s 12 noon.  With nothing to eat or drink since midnight the night before.  The nurse who called told me that if I wanted, I could get up before five and have some dry toast and black coffee.  I elected to sleep in.

This has made me think about how entitled I feel when it comes to my three meals a day.  How abnormal is that?  I was actually starting to get irritated because I wouldn’t be able to eat this morning.  In reality, this brief moment of being a tiny bit hungry is good for me.

Praise be to God who has provided so bountifully for me all my life!  May he be with me today, and may he guide my doctor as he works on me.

My awesome Aunt Sharon is coming down to stay with the kids.

I have almost crossed off everything on my “to do before surgery” list.

I have slathered On Guard (diluted with fractionated coconut oil in a roller bottle) all over my neck area multiple times a day in an effort to wipe out any unfriendly germs living in the area to be operated on.

I am defying my NPO order by sipping on a tiny splash of water right now.

See you on the flip side.

Vitamin D, Naps, and Nursing

There may be a connection…but that’s not where I’m headed. :)

First…I got my Vitamin D levels checked after learning that Hashimoto’s is linked with low Vitamin D.  My levels came back as 23.3 ng/mL, which is considered “insufficient.”  Deficient would be anything below 20, and “good” levels are anything from 30-100.  So I got me some good Vitamin D3 supplements to take. I found a good deal on Vitamin Code D3 with probiotics on Amazon. Is it possible that I feel better after only 3 days?

Weaning is….going.  We’re making some progress.  The beach idea did NOT work out.  It was not pretty, people.   But yesterday I just decided that we were GOING to do this.  I picked out four books that I thought she would like and told her they were “nap time” books.  I basically tried to mimic her successful bed time routine.  We read the books, then I put her in bed with her lullaby CD on, and I sat on the end of her bed.  Day 1, Wednesday, it took 2.5 hours from the time we sat down to read until she fell asleep. I was DETERMINED not to leave that room until she fell asleep.  Day 2 was today, and it took one hour from start to finish. I am praying that it continues to get easier over the next several days.

I need to decide if I should cut out her morning nursing before surgery, if I should let surgery be the thing that ends the morning feed, or if I should continue it for a little while after surgery.

Part of making that decision will be how well she is doing with the change in her nap routine over the next few days.  I also need to find out how soon it would be safe to nurse after having general anesthesia, and how pain meds will affect things too. I don’t want Eleanor to be stressed by weaning too fast at the same time that her access to me is going to be limited by my surgery and recovery. Also, if I quit the same day as my operation, I will probably have to deal with engorgement for a day or two at the same time that I’m recovering from surgery. Not fun.  So I have lots of factors to consider.

Tomorrow is one week until surgery.  Y texted me and asked if she could put it in the church bulletin on Sunday.  My first though was, that’s kind of early, isn’t it?  Then I realized it was going to be less than a week before my surgery.  So I let her do it.  It really is almost here.