Dr. Apt Today...

What is the saying?  The more things change, the more they stay the same? 

Once again, I find myself not knowing much of anything, except that I am going nowhere.  After doing blood work, and seeing my Endo today, we have changed my meds...once again.  This time, we are keeping the same dose, but changing to a different name brand.  (switching from brand name Synthroid to brand name Levoxyl)  I will continue on with the brand name Cytomel as well.

Long story short, my TSH levels are through the roof. (normal range is .5-4.0.....mine is at 73.0)  This is the first time I have ever sat down and looked over the list of symptoms for Hypothyroidism and realized that I have EVERY.SINGLE.ONE.OF.THEM.  It is so disheartening, because I still feel like I am getting nowhere.  My Dr. had a good analogy.....she said it is as if I have been treading water for so long, and now, not only am I still treading, but suddenly I am getting further and further away from shore.  She is baffled by all of this too.  Changing brands was kind of a "lets see if this works" kind of approach to it.  And she will spend the next few weeks researching and seeing what other options we might have.

What this also means, is they are still holding off on scheduling my full body scan that they were supposed to do last month.  Now, it will at least be May before we do it.  I am not happy about this at all, but the way this scan is done, there is no way they can do it with my levels all being so out of control.

So, once again, I left the Dr. office feeling defeated, and feeling like I have to keep on the "strong face" a little longer.  That is getting harder and harder to do though....

An Update...A HONEST Update

AN UPDATE!  Warning….it is a long one….

I have been wanting to write this all week, but have been struggling with it.  But I finally decided that I might as well put it all out there.  I went to see my Endocrinologist on Monday, and she didn’t tell me what I wanted to hear. (I hate it when doctors do that…)  

As most of you know, I have been dealing with thyroid issues since August.  Here is a recap for those new to the blog….I went to see my PCP back in August ’11 due to a large “growth” in my thyroid area.  Basically, to give you a visual, it looked like I had a large, off-centered Adams apple.  It had kind of grown over time, and because it grew fairly slowly, I hadn’t really noticed it.  (When I finally did get in to an Endo, his first question after looking at my labs was “Haven’t you been extremely tired?!?!”  My answer was, “Yes, I am a full-time, working, mother of 2.  Of course I am extremely tired!!”)  Anyway, My PCP quickly told me I was way out of his realm of expertise, and needed to see an Endocrinologist right away.  Now, I don’t know if any of you have ever tried to get into an Endo in San Antonio, but GOOD LUCK!  After almost a month of my PCP calling in referrals, I took matters into my own hands, and ended up getting in with a guy in San Marcos.  Long story short, I had hyperthyroidism.  But none of my blood work or scans showed cancer, so that was a relief.  The meds he put me on to get my thyroid levels down worked great on paper, but the size of the growth just kept growing.  So he decided that surgery was imminent.  We finally got my levels where they needed to be, and I had surgery on Dec. 28, 2011.  I actually ended up having 2 separate growths, and they did what they call a near-total thyroidectomy – meaning they took all of my thyroid out, except a few pieces of tissue.  I was healing up great, and recovery was going good, and then I got the call I wasn’t expecting at all….on January 5^th, 2012, I get the call that pathology had discovered that the growths were in face cancerous.  So, I had to go thru Radiation treatment to “zap” the remaining thyroid tissue, to get any remaining cancer cells. (this wasn’t a fun process, leading up to or recovering from)  After this, we were able to start taking Synthroid (I was taking the generic kind though...keep in mind, in all previous posts prior to this one, when I said Synthroid, I was meaning generic Synthroid...this will be important later in this update...) to give me all the stuff I was missing from not having a thyroid anymore.  I was told that within 6 months or so, I should be feeling a lot better.  

Well, that was in late January.  It is now mid-October.  And not only am I not feeling better, some days I am feeling worse.  The worst I have ever felt on some days.  I finally got into a new Endo in August.  (The one I wanted to get into from the very beginning but she had a 3+ month waiting list)  She is amazing.  I really like her.  I FINALLY feel like someone is listening to me AND understands what I am going thru and what I am saying.  

The fact of the matter is many Endos try to treat all thyroid patients the same.  Patients are either hyper or hypo, give them meds and send them home.  However, when someone doesn’t have a thyroid at all, you can’t treat them like that, there are other things that come into play.  And when she finally explained this to me back in August, I thought, finally….we are on the right path. 

But I haven’t been FEELING like we were on the right path.  And it was shown to me, on paper, this week that I am not crazy in feeling that way.  Evidently there are about 5% of people in the world that take the generic Synthroid that it DOES NOT WORK ON!  And evidently….I am one of those 5%.  So the last 9 months of upping my dosage, trying to get me back to feeling somewhat normal, have all been for nothing. 

SO….Plan A to fix this….I am now only to take Brand Name Synthroid (ie: more expensive).  We will do this for now (along with the other supplements she put me on back in August) and see where we are Mid-December.  If this isn’t working, there is a Plan B in place, but I REALLY don’t know how I feel about it, so please pray Plan A works.  (Don’t really want to go into Plan B at this time…need to do my own research on it before I hear everyone else’s thoughts…. J)

Here is the thing….if you have seen me in the past 9 months, you probably had no idea I was feeling bad.  This is why I started not to post anything about this at all.  One downfall I have, I guess it’s a downfall anyway, is I put up a good front.  I can put on a mask in front of the world, and no one will know what is going on inside.  This has been damaging to me many times in the past, but I still do it, and I don’t know why.  So I figured I would let you all know some of the things I have been suffering with.  In no particular order….

·         Tired.  Always tired.  If I am doing something (going out with friends, planning an event, focusing on a project with the kids) I do ok.  But the day to day gets to me.  I seriously do not truly sit down in the evenings until the kids are in bed, because I know as soon as I do, I will be asleep too.  It is so frustrating.  To me.  To Steve.  To my kids.  I can't tell you the last time I stayed awake thru a movie.  Or stayed awake, waiting for Steve to get home or finish working on something so that we can talk.  Or stayed awake while riding in the car for any considerable distance.  This is probably one of the hardest parts.

·         Depression.  I am usually a pretty happy person.  So this has been another big obstacle for me.  There are days that I don’t want to get out of bed.  And a lot of days, if it weren’t for those two precious girls, I don’t know that I would.  I have stopped caring about a lot of things that used to mean so much to me.  And I hate it, because I see myself doing it, and I can't do anything about it. 

·         Mood swings.  I hate this.  SO much.  I have snapped at my husband and my kids more times than I can count.  And I hate it.  Steve understands it, to some degree.  But my sweet girls don’t.  And I feel so bad for them.  I have really been trying to control this.  I have also noticed it affecting other relationships as well.  I am so sorry if I have said anything hurtful to you recently. 

·         Weight gain.  All I can do here is try to be smart and careful.  But seeing it slowly happen and clothes not fitting sure doesn’t help my self-esteem very much.

·         Hair shedding.  And I have always shed pretty bad.  But this is BAD.  That is why I originally opted for the pixie cut, and why I will be keeping it short for a while.

·         Cold.  I am pretty much cold all the time.  On the rare occasion I am not cold, I am burning up.  Hormones are a lovely thing.

·         Inability to focus.  This affects me at my job more than any place else.  And unfortunately right now, my placement in the office provides a lot of distraction, making this even more rough.  But I am trying my hardest to make do.

·         Memory/absent mindedness.  I have always had a good memory.  Now, not so much.  I have forgotten some pretty important things here lately.  I think I need to start carrying around one of those big daily planners.  Lol

Those are the main things.  There are other aspects of my life that have been effected, but those are the main ones.

Now, like I said, many people probably don’t realize all of this is going on.  That’s because I don’t want people to feel sorry for me.  I don’t want people to think I am making excuses.  I don’t want to be looked at any differently than before.  But, the short journey back to normalcy isn’t going to happen like I thought, so I have to make people aware.  If I seem down, just smile and give me a hug.  If I seem tired, don’t make a joke about me being up too late.  If I bite your head off about something, just ignore me.  J  Seriously though, people have been asking me how I have been doing, and I haven’t been honest.  So I figured now was a good time to start.  

So there you have it.  An update.  I will keep you all posted as to how the medication switch works out, and how the appointments in December go. 

Thank you all for your continued prayers.

Update Time!

It has been awhile!  In a nutshell, here is what has been going on….

I went to see my Endo in June for a follow up.  I had still been having a lot of issues with lack of energy, always sleepy, emotional (more than usual!) So, he decided to up my Synthroid dosage….again.  As my appointment was ending, he says, “Oh yeah, I forgot to tell you, I am leaving the practice, and there will no longer be an Endo on staff here, so we need to get you into another Dr.”.  Part of me was excited, because I had been wanting to get in with someone in San Antonio, rather than having to drive almost to Austin for Dr. appointments.  Another part of me was nervous because I know how hard it is to get in with an Endo in San Antonio (hence why I was going out of town to begin with). 

So, I decided to try to get in with the Dr. in San Antonio that I had wanted to see from the beginning.  Wouldn’t you know, 3 ½ month waiting list.  I explained that I had a Dr. Referral, and that I needed to be seen sooner since we needed to do blood work, refill meds, etc.  Finally they scheduled me for August 10^th (this was around July 1^st).  So then I get a call cancelling my August 10^th appointment, and trying to reschedule me for October 23^rd.  I threw a fit (remember I said I was extra emotional right now???).  Long story short, they got me in due to a cancelation last Wednesday, August 1^st.

Let me start by saying I LOVE MY NEW DR.!!!  It is no wonder her waiting lists are so long.  She is wonderful.  She personally sat with me for almost an hour, going over my history, explaining her concerns about the care (or lack thereof) that I had been receiving, and she explained everything that had been going on with me in a way it had never been explained before.  In a way I could understand it, and in a way that showed me that she knew exactly what she was talking about. 

I don’t want to bash my old Dr., but he really had no clue what he was doing with me.  My new Dr. says that looking at the method of treatment he was giving me, she really didn’t think that he had dealt with many thyroid cancer cases, nor total thyroidectomies.  She was very concerned with the fact that he treated my cancer, and then that was it.  We never talked about the cancer again.  But the fact of the matter is, this cancer has a likely chance of reoccurring.  And if we aren’t vigilant with our scans, and blood work, we might not catch it early.  So the first thing she did was make a “cancer game plan” with me.  While her initial comment about the cancer reoccurring scared me, the fact that she followed that with a game plan gave me a calming feeling about it all.

The next thing she did was order A BUNCH of blood work.  She told me that she would call me with the results the following Wednesday.  So, I made myself a note to call her, because I don’t think a Dr. has ever followed up on this promise with me.  So imagine my surprise when my phone rang last night, and it was my Dr. with my results.  My first thought, “My actual Dr. is calling me, a day earlier than she said she would….must be bad news.”

But it wasn’t!  GOOD NEWS:  my tumor markers are LOW!  That is great news, and a relief to me since the Dr. was so concerned that my old Dr. hadn’t checked this since my radiation back in Jan/Feb.  Next, she is keeping my Synthroid dose where it is for now.  But she is also adding a T3 supplement.  This will only make sense to those of you who understand the thyroid issues, but basically, the Synthroid has my T4 & TSH levels in an “ok” range for my condition.  However, my T3 levels are extremely low.  (which explains the sluggish/drowsy/blah feeling that I have been having)  She says that once I start taking the T3 I will feel a BURST of energy.  She said it will be noticeable since I have been so low for so long.  I am looking forward to that!

So, what comes next?  Well, I will go back for more blood work in October.  We will check tumor markers again.  If they are still low, we will go about with our game plan.  They will also check my other levels (T3, T4, TSH) and make any adjustments to my meds that might be needed.  Then we will do that again in a couple of months.  As far as the “cancer game plan”, as long as the tumor markers stay low, I will have full body scans in January of the next 3 years (2013, ’14, ’15)  After that, it changes, but that is so far away, we will cross that bridge when we get there.  I have been told many times, by many different people, with different thyroid issues, that the most frustrating part of it all is getting your meds where they need to be.  And this will always change, because we as humans are constantly changing.  All I know is I long for the day when I feel normal again.  When I have the energy to keep my house clean.  When I can stay awake to watch a movie with my husband after the kids go to bed.  When people aren’t constantly asking me what is wrong because I always look tired, and like I am about to cry.  I long for normal.  And I know I will get normal, someday. 

How is everything else going???  GOOD!  The girls are growing and changing every day.  Brilyn starts Kindergarten in 2 ½ weeks.  She is beyond excited, and I am starting to stress about it….uniforms, school supplies, bus routes, afterschool pick up….etc.  Jacelyn will be 2 on October 1^st.  I can’t believe it.  Where have the last 2 years gone?  She is such a ham, and keeps us laughing.  She is definitely different than her big sister.  The differences in their personalities amazes me.  But they are BFFs. I see lots of memories being made between those 2.  Steve is doing good.    He is still with Preferred Landscape & Lighting and he recently got a promotion.  It is keeping him busy.  But I think that he is enjoying doing something a little different than he had been.  I guess that is all.  I will try to update in the next couple of weeks and let you all know how the new meds are working, and how Brilyn likes school!  J

Follow Up w/ Surgeon

I had a follow up with my surgeon this afternoon. I thought that this would be the final appointment with him, but I was wrong. While he was very happy with the way everything LOOKS (more on that in a second), he is a bit concerned about the fact that I have practically no feeling or sensation at the incision site. He said that should have come back by now, and that there could be some permanent nerve damage. This isn't anything serious, really, he just wants to follow up again in 6 months and double check on me.

As for how it LOOKS, he couldn't be happier! As a matter of fact, he took a picture of my neck. Lol! I told him that people that don't know about my surgery don't even notice the line on my neck. His response..."well I hope you tell them all about the marvelous surgeon you had!".  He bragged to Steve & my parents at the hospital about the special attention he paid to me and closing up my incision...and he is obviously still proud of his work!

Tomorrow I go to the Endo to go over the latest test results, make any med changes, and address the few concerns that I've had.

Thank you all for continued prayers, and never ending support!

I'll get through this...

Let me begin by thanking everyone for their thoughts and prayers. I never realized how many people cared! j/k Seriously though, I really appreciate you all!!!

Today started with a follow up appointment with my surgeon. He is VERY pleased with the healing of my incision. (I know....I never posted a picture the other night....soon, I promise) He doesn't need to see me back for 3 months, so that is good news!

Next, we went to see my Endo and talk to him about what the next step should be. I will try to explain this the best I can. He has put me on a VERY STRICT low iodine diet. The list of things I can't eat is much longer than the things I can. This is going to be a challenge for me! But, it is necessary for me to do for the next step to work properly. I also will not be taking any thyroid replacement meds during this time. So....lack of food....no thyroid meds.....I will not be very pleasant to be around for the next 3 weeks or so. If you see me, expect me to be really tired and really crabby.....(I know, what else is new, right?!?! lol)

So, I will follow the diet and no meds, and on the 23rd, I will go have labs done to see where my levels are. They need me to be extremely "hypo" for the treatment to work. I go see the Dr. again to get these results on the 26th. He will say yes or no as to if I am ready for treatment at this time.

Once I am ready for the treatment, I will swallow one lonely little pill. Thats it....well, kinda anyway. I will swallow one pill of radioactive iodine, and while only one pill, it is a STRONG dose. Strong enough that I am going to have to be in complete isolation for 5 days. (still trying to figure out all the details of how that is going to work....) This iodine will be absorbed by the thyroid tissue still remaining (which is where the cancer is) and it will destroy this tissue.

About 10-14 days after I take the magical pill, I will go in for a full body scan. This will let us know for a fact that the cancer hasn't spread anywhere else.

And then, that is it. I will get back on my thyroid meds, and I will be good as new....or something like that. :)

Really quick, I wanted to thank the amazing company that Steve works for. They have been so understanding with his scheduling through all of this. And then, they had a BIG, YUMMY dinner ready for us when we got home tonight. Thank you guys SO MUCH!

Again, thank you all so much for your support. I want to leave you with the "slogan", for lack of a better word, that is being used for the new sermon series at church. The series just started this past Sunday, and I felt as if this series is just for me. I am so glad that everyone in our church family is letting Max just talk to me for a few weeks.... :)

"I'll get through this. It won't be painless. It won't be quick. But God will use this mess for good. I won't be foolish or naive, but nor will I despair. With God's help, I know, I will get through this."

God Bless you all, and thank you all again!!!

~rlb

A call I didn't think would come...

So throughout this whole thing, I've been a little nervous due to my family medical history. If something is wrong, its usually something big. You know, us Brileys like to keep the medical field employeed. Why one of us kids didn't end up in that profession, I don't know. At least one sister-in-law recognized the need and became a nurse!!! Anyway, as I was saying...

I've been nervous from the get-go. But, all blood tests (and there were a bunch of them) and all ultrasounds showed nothing. No cancer. I went into my surgery being told "we are 99% sure you do not have cancer. But we always send the tissue off to pathology just to be sure." I felt very confident in all of that. So, I had my surgery. The Drs both told my family how healthy my thyroid looked, aside from the growths. Almost as if they were even in shock.

Fast forward to Thursday, 1/5. And then my phone rang. My surgeon was calling me to tell me that he got the pathology results back, and it wasn't good news. The left side of my thyroid was malignant. The right side was pre-malignant. The good news, they got MOST of it with the thyroidectomy. The bad news, they didn't get all of it. Bottom line.....I have cancer.

Now, stop right there. I don't care who you are and what you have been through. If someone says those words to you, "you have cancer", it doesn't matter what kind of cancer it is. Those are scary words.

That all being said, the outlook is good. Another operation is unlikely. We will most likely do radiation to treat the cells that are still in my body. The good news about this type of cancer is that it spreads slowly, so chances are it hasn't spread anywhere else in my body. It also is easily, and completely treated, meaning once we get rid of it, it should be gone and shouldn't come back. So, there is that good news in there....

I go back to the Drs on Tuesday. I go see my Endo first (whom I saw last week before they got these results....he started me on my Synthroid....and has since taken me off of them.....so glad to pay for meds I didn't need....now anyway.....) and then I go see the surgeon for the 2 week follow-up from my surgery. Speaking of, my incision is healing GREAT! The "super glue" has come off, and it is healing nicely. I will try to post a new picture in the morning...I'm already in bed right now, and not getting up just to take a picture!!!

So, I will be back with a more detailed update after my appointments Tuesday. For now, I just ask for your prayers. Prayers for my strength & health, prayers for my family & their peace of mind, and prayers for the Drs & all of those in the medical field looking after me.

Thank you, and God Bless you all!

~rlb

Surgery Update

**WARNING** Semi-graphic pictures contained in this post.... :)

Well, surgery has come and gone. I had my thyroidectomy on Wednesday, December 28. The surgery went much better than expected. All of the nerve monitoring that they had to do went well, and it all ended up taking less time than expected. Recovery went well, and I was into my private room by lunch time. My recovery in my room went well. I was able to go home Thursday evening. Since coming home, things have gone pretty well. I already have cabin fever, but just my trip to the grocery store has worn me out. I spent most of the day Saturday in bed on pain meds. Today (Sunday) has been a little better, but I am ready to go to bed right now too. I almost have my voice back, but it does still sound a little fuzzy at times. I am eating solid food without any problems. For the most part, swallowing doesn't hurt, although hiccups, sneezing, coughing, clearing my throat yawning, etc HURTS! I have a good amount of my range of motion back, but I am still moving my head pretty slow. All of that being said, I am still VERY SORE. There is still a lot of bruising that is very uncomfortable. And it all itches so bad!!! All the stitching is all on the inside, so they will dissolve. But the outside of wound is "super-glued", which will peel off within the next couple of weeks. This method should minimize the lasting scar that I will have, and over time, just a faint line should be visible. As far as how it feels to have that HUGE mass gone, the only way I can describe it is that it feels hollow in my throat. (I know...doesn't make a lot of sense, just don't know how else to explain it!)

Next up, I go see the Endocrinologist on Wednesday, Jan. 4th, and then I go see the surgeon again on Jan 10th. The Endo should get me started on meds, to make up for the missing thyroid, and we will go from there. I hope that we get that all worked out quickly, and I am back to normal (or as close as possible) soon! :)

And for those who are curious, here are some pictures!

This is just a couple of hours after surgery:

And this is one day after surgery:

And this is today (4 days after surgery):

Thank you all for the continued thoughts and prayers. I will continue to update this blog thru my process.

~rlb