Symptoms check

Well, I've been finished with my antibiotic for a week now and I still have that bitter taste. Also, I have some periodic tingling around my lips sometimes, mostly at night, as well as cramp/achy forearm and hand, and my left eye has been twitching on and off for about a week. I started taking calcium about 3 days ago. I'm hoping it will help if this is all a calcium issue. I started exercising on my WiiFit and noticed that after only a couple of days of doing just light/beginner exercises that it left me with extremely aching legs. Not the sore muscle sort of feeling....just the general all over ache in both of my legs and extremely fatigued. I took a day off and then yesterday started a few light exercises again.

Thinking about going back to work on Monday

I was told by my surgeon that I'd be an idiot to go back to work before 2 weeks (I had originally thought I might only be out one week.). He added that it would be wise to stay out for 4 weeks. That seems a bit much. I have felt fairly good this week. I'm still not 100%. But, I'm thinking of going back to work on Monday. I think that getting back into a somewhat normal routine again would also be beneficial. I think I just do better when I have something that I have to do and have somewhere I need to be. I talked with my boss yesterday and he said they were willing to just sort of let me leave when I feel like I need to. I can't ask for much more than that. He had already given away an upcoming call for me for next week, even if I was planning on coming back. I'm thinking that the worst that could happen is that I get there, decide it's too much and just sit out and try again the following week. And, yes....I'm just thinking out loud at this point.

Thyroid crimes and misdemeanors

Earlier, I posted about taking bad advice from those who claim to be thyroid experts. Wow, do those people have issues! It was an online group I had joined for people who had undergone a thyroidectomy. Basically, I asked a question in hopes of comparing post-thyroidectomy symptoms with others experiences. I didn't get a response answering my question. Instead, I got admonished for having 'let' someone take out my thyroid, and was giving unsolicited medical advice. They were telling me specifically that I "should not even think about RAI", and telling me trade names of medications I should be taking instead. Keep in mind, they didn't even know my specific situation. I let it go at first, but when the information kept coming, I posted that they were offering up medical advice and they were being irresponsible in doing so and that in fact, what they were doing was criminal and dangerous. I added that they shouldn't worry about me trying to cause trouble because I was leaving the group/list and I just wanted them to be careful about how they offer up the advice. I suggested that they say in clearer terms what worked for them, but keep in mind that treatment isn't a one size fits all situation.

My leaving didn't satisfy them. They, one of them apparently being the owner of the group, the other a moderator, decided to look up my personal email address after I had already left and began to email me off the list continuing to feed me advice I didn't ask for. I asked both of them to please stop contacting me and that what they did was wrong and that I do not want any more of their advice. I then blocked them from my email. This didn't stop the owner of the group who then decided to use another email address to get to me. At this point, I responded that this was really unethical and that perhaps she needed to get a life and leave me alone. I also informed her that I was going to have to take further action against her to see that she did.

I filled out a TOS abuse complaint to the internet service. They responded to me and informed me that I needed to contact the group owner. I couldn't believe it. I had already explained to them that it was the group owner and a moderator who had harassed me. Finally, today I got another letter back from the service provider asking me to give specific post numbers, etc. so that they could investigate things further. I don't know if I can retrieve the information or not....but, I'm going to do my best to respond to their request so that maybe these people will be a little better regulated.

I'm all for freedom of speech and for talking about what works and what doesn't and what products you might think are better than the next. But, there is a fine line when it comes to advising others on what they should be doing about their health, when you aren't a practitioner. It pains me to think there are some poor victims out there who will actually buy into everything these self proclaimed experts say and not treat their thyroid cancer. A cancer that is unbelievably curable if treated early. It is beyond criminal.

Must be the Lortab

I slept last night. I hadn't slept very much over the last few nights. I'm talking wide awake until like 4:00 or 4:30 am. So, last night I decided to not take my pain medicine and instead take a Lunesta. It worked. No crazy lying in bed eyes wide open. I had actually tried Lunesta after a couple of hours of taking my pain medicine in a desperate attempt to sleep, but with no luck. Therefore....I'm thinking maybe it's the Lortab. My pain at this point is nothing that a little Motrin or Tylenol can't fix. I'm just wishing at this point that I could trade in the Lortab for more Lunesta as I'm down to my last two! At any rate, I have less anxiety about going to bed now for fear of not sleeping.

Beware of bad advice

I first started researching hypothyroidism after a friend from work suggested a site to me. http://www.stopthethyroidmadness.com/ And, while I was convinced that I had a lot of those symptoms listed there, I wasn't convinced that all of it was related to my thyroid. So many symptoms are so vague and present in so many disorders such as fatigue and depression, etc. So, what was responsible for what? It's like the chicken and egg question. I was/am definitely impressed with the site. But, still...I can't buy into everything I read on there, especially when the information on some of their links are interpreted from people with no medical background. It's basically their opinions, based on their personal experiences. I mean, it's easy to draw conclusions from information we read, and from some of the things that we experience, but sometimes, those conclusions simply aren't correct. That's why we have schools to help us be equipped to practice medicine. It's a practice. It's not something that if you just read enough you are a doctor, or qualified to practice medicine.

I just posted a comment/question on one of the boards about the bitter taste in my mouth. I was referred to a blog of a thyroid cancer survivor. I was shocked that when I went to it, she advocates saying 'no' to a thyroidectomy, even if you have cancer, as well as RAI. That is irresponsible to me. That's practicing medicine without a degree. I mean...to suggest that there might be other options is one thing...but, to advertise that these things aren't good for you just because it may not have been a smooth course of treatment for you is just criminal.

I'm an open minded person. I believe in traditional medicine and holistic and alternative forms of medicine. I think they each have their place. Let's remember that we are all different. Medicine isn't as much of a science as everyone likes to think. It's a mix of art and science. It takes careful evaluation of each individuals situation to determine the best course of action. It's not a one size fits all world for anything, especially when it comes to our health.

It was a very good day...for thyroidless girls.

You have to sort of say that title to the tune of Frank Sinatra's "It was a very good year...". Anyway, it was. I woke up well, folded some clothes, did some laundry, talked to a couple of friends on the phone, then after a very long nap, helped to take down the Christmas tree. And, sort of kind of threw some dinner together for the fam.

I'm so appreciative of these good days when they occur. I'm trying to put a pattern to them, but so far I cannot. I thought, perhaps it's sleeping better at night that does it...but, that can't be true because last night I barely slept. I thought it was the time between my morning dose of Synthroid and when I eat. But, I've waited both 30 minutes, and 60 minutes. No difference. And, the only other medication I'm taking when I do eat, is/was my antibiotic, and sometimes Tylenol.

I'm thinking it might be mental. Just having someone else around in the mornings sort of gets me going. The simple and basic need of human interaction. I mean, after all...I'm used to being at work by 6:30am and not only interacting with people, but taking care of them. It's times like these, when I know that staying home is what I'm required to do at present, that I don't think I'll do well whenever I do retire. 'Purpose' is a basic need for my psyche. I just need to convince my mind that rest does not equal no purpose.

What is with this bitter taste??

Anyone? Bueller? Since my surgery, I have had this faint, but always present bitter taste in my mouth. I was in a scopolamine fog for a couple of days after surgery, but I'm pretty sure it started even before I was given my first dose of Synthroid. It's a taste that I used to notice when I would occasionally take Lunesta a year or so ago for some chronic insomnia after my mother's death. Only, it's not as strong as that bitter taste. The only other thing I can think that it might be is the antibiotic, clindamycin, that I just finished. I guess that will be my answer if this bitterness goes away in a few days, since I just finished the last dose. Anyway....I'll do a search on the web as well, but is there anyone out there who tastes this as well?

Productivity, after a long winter's nap

Finally, after a long winter's nap...productivity. I basically had to force myself and I was quite slow during this productivity...but, nevertheless, productive. And, now...exhausted again. I see there is a reason to take things slow after all. What I need most right now is patience.

My mind says GO...my body says NO!

When I watch things like "Clean Sweep" and "Clean House", I get so motivated to do a really thorough cleaning out of my environ. But, never before today has that urge been so strong, yet my body been so unwilling. I'm fighting heavy eye lids as I type. Not sure if I should just try to get up and work past it, or just take a nap and get up and try again. I know what my husband and other's would say: "Listen to your body...rest." But, I wish so much that I didn't have to. I wish that I could use this time to clean and organize. All of it together is overwhelming. So...with that, I guess the answer is to try a short nap. Hopefully, a better afternoon will be in store.

Survivor's guilt?

Today was a much better day. I had a much needed visit, which had been set a while ago, with the counselor. I got to get out of the house as a result, and go to lunch with a dear friend as well. When I arrived home, I learned that a US Airlines plane had crashed into the Hudson River shortly after take-off from running into a flock of birds. Fortunately, they have all survived thus far.

My counselor was asking me how I 'feel' about the diagnosis and everything that has happened the last couple of weeks or months regarding my thyroid issues. I ended up repeating how 'lucky' I feel to have such a treatable cancer, but knew there was something else I was feeling that I couldn't articulate. This afternoon's crash made me acutely aware of what it was. I think it's survivor's guilt. In a very strange sort of way, I have an uneasy and guilty feeling about having been blessed to have a cancer that is so treatable. I'm not trying to bring on bad luck, or looking a gift-horse in the mouth, or anything of the sort. I'm thrilled, but I have a heaviness in my heart because not everyone can be so fortunate and I just sometimes can't help but wonder why I deserve such good fortune. I'll take it, for sure...and, with much gratitude.

First energy crisis today

I could barely move today. I spent 75-80% of my day in or on a bed. Didn't really even care if I ate or not. At first I had chills and a horrible headache, then I was just tired and had no energy. I wanted so badly to get up and get some things accomplished. The tree for instance. The Christmas tree is still up!! Things go so crazy after my diagnosis at Christmas that it was just like survival mode or something to get through each day and do the bare minimum. Finally, I forced myself to get up, eat lunch (around 3pm) and get a shower. After that, I did feel better. I was able to gather a load of clothes, which I asked my 4 yr. old to carry down (without much persuasion) and I washed and dried them. They aren't folded...but, at least they are clean. Also, I was able to write on my blog (aside from this entry), and supervise my 4 yr. old's bath and get her into bed. I ended up feeling better about things, but I was very discouraged by the lack of energy this morning compared to the other mornings thus far. I'm blogging about it to keep an accurate account of my perceived energy levels. Hoping for progress.

Thank God for AFLAC

Two and a half years ago when my mother was diagnosed with stage IIIb lung cancer, she was going through paperwork and remembered this policy she had. It was an AFLAC cancer policy, actually also some sort of accident policy on it as well, offered through her work. She was a brilliant lady for many reasons, including having the foresight to purchase this policy. She died only six months into her diagnosis and barely got to work a month of that time. Now, my parents were frugal and had come from the generation who 'puts back' and 'saves for a rainy day'. Still, having that policy helped tremendously with the additional financial stress that cancer can hand you.

About a month after my mother died, I decided it probably would be a good idea if I purchased one of those policies as well. My work didn't offer it, so I decided to get online and seek out a local representative. I did. Her name is Terri. She was ridiculously helpful, considerate and flexible.

Now, as I'm going through the already growing pile of medical bills and insurance EOB's, needless to say, I'm so thankful for AFLAC and Terri. I guess I'll be getting to put her helpfulness, consideration, and flexibility to the test over the next few weeks and months as I begin turning in claims. But, as for now....I recommend this to everyone out there. Thyroid trouble or not, history of cancer in your family or not.....chances are, it's going to get us at some point. I'm not trying to be morbid...just trying to give you a cushion for your fall.

Low iodine diet stress

Post operatively, they told me that I would definitely have to take a radioactive iodine treatment or RAI. Upon researching it a bit, I find there is a lot more to it than just swallowing some little crazy radioactive pill (the Matrix and Alice in Wonderland come to mind). Apparently, you have to prep your body about 2 weeks ahead of time by getting all of the thyroxine out of your system to make it hungry for the iodine. This means that you have to stop your thyroid medication and put yourself on a low iodine diet. I'm a nurse, for the love of God, and I don't even know all the foods that are high in iodine or low in iodine. So...I'm starting early on the stress (since I'm home for at least 2 weeks recovering) and worrying about it now. Thankfully....our friends at ThyCa.org have already figured it all out for me.

If you haven't yet checked out their website, it's a must. There is a free downloadable low iodine cookbook. I know, I know....cooking seems like the last thing you want to do. But, since it's difficult to determine the amount of iodine in prepared and manufactured foods....apparently, you're better off to cook your own. And...a tidbit from ThyCa...ahead of time because the last thing you're going to want to do is cook new recipes when you're thyroxine is depleted and you're metabolism is running on E. So, I guess this is one time it has really paid off to start worrying early.

I'm back, baby!

Surgery complete, hospitalization over, home once more! I was released from the hospital yesterday after my drain finally was close enough on how much it was putting out that it could be removed. They gave me the option to come home with the drain and come back on Monday to have it pulled...but, in the words of my husband...."It's nice to leave with nothing left in you...".
And, I find that he is right....as usual. Sad, but true.

I'm told the surgery went wonderfully. There were one or two lymph nodes that the cancer had metastasized to, but again...no big deal. Just means they took them out and that I'll be receiving the radioactive iodine therapy in a few weeks. The best news about it is that my surgeon didn't feel like the lymph nodes that were suspected on the ultrasound that were higher up, were anything to worry about at this point. Which means....he only had to extend my neck incision a little bit, vs. going all the way up my neck laterally.

Uneventful course at home thus far. This is my first day on my own at home. Very quiet. Very nice. I haven't had any pain medicine yet today. I'm a little achy. I'm going to try Tylenol first though. I feel stronger than I did yesterday. Though, I still may nap this afternoon. I'd like to get up, clean the kitchen, vacuum the rug and do some laundry....however, I'm pretty sure my husband would try to have me re-admitted or committed. So, one step at a time and everything will fall back into place.

Thinking of having my husband take some pictures of the incision to post on here as progress. Everyone was saying how great the incision looked....except my dad. He just kept saying, "Oh, that looks bad...they really had to open you up.". Wow....a little filter please, Dad. It's OK. He's not medical and I guess I should expect that from a parent. I'm using my 4 yr. old as the barometer, anyway. They're the most honest. She didn't freak out at the drain when it was still in...and, only once yesterday did she say, "It looks a little worse, Mommy. I fink maybe you should rest."

Surgery tomorrow

Tomorrow is arriving much sooner than I expected. It's been a fast and full week. But, tomorrow is my thyroidectomy and, I'm guessing things might be going a little more slowly for me for a while after that.

Today, I had another ultrasound of my neck to determine if there were lymph nodes that were enlarged as well. It did show that in fact there were lymph nodes on both sides involved. At this point, I don't know what that means for me, exactly. I can speculate. But, I've decided not to. Over the past month or more, I have come home after tests and diagnoses and doctor's visits and put together my own medical knowledge and researched the internet and spent hours speculating what each little piece of information might mean. And, simply...I'm tired of it. I am going to sit back and be a patient, patient tomorrow. Or, at least I'm going to give it a helluva shot.

More to come....post-thyroidectomy.

Finally, a good review on thyroidectomy

Several people, with the exception of one whom I asked to be candid, have been offering up their 'horror' stories about their thyroidectomy or someone else's they know...you get the picture.

It seems by far, the majority of complaints are post-thyroidectomy issues with thyroid replacement therapy and trying to get their levels regulated. Everything from being barely able to function from doses too low, to not sleeping for 3-4 days because of doses too high. I'm happy to get this cancer out, but not looking forward to the aftermath.

Today, I heard my first 'good' story. A colleague reported that she saw a friend over the weekend who had recently had a partial thyroidectomy (turned out cancer as well) and she reported that she did not have any post-op pain at all. Believable or not...I couldn't help but be a bit inspired upon hearing the good review. I won't delude myself into thinking that I shouldn't have any pain whatsoever. However, it sure was good to hear a little good news today.

They're going to think I'm crazy with a list of symptoms like this! I do!

I have my initial appointment with the endocrinologist on Tuesday. Yes, that's right...I skipped ahead to the ENT consult when I started having increased pressure in my throat. Anyway, they sent a patient packet to be filled out before your appointment and I think I must have circled something in every body system as far as symptoms. That's crazy! They are going to think I'm a nut job or something.

I feel sort of guilty/defensive about having so many symptoms. I'm wondering if everyone feels like that, or is it just some screwed up thought process I have because I am a health care professional and I feel as though I should be immune to health issues and that I shouldn't complain or have 'symptoms'. But, another part of me feels compelled to disclose all of these weird little symptoms I've been having in case they have anything to do with this mess that is my thyroid...like it might help him solve some sort of puzzle or something. Oh well, I guess it is what it is. And, hopefully soon I'll know what it is. I'll hopefully have a few more answers to why I feel so ridiculously fatigued and when I may get some energy again. And, weighing heavily on my mind right now: Is my daughter now at increased risk for thyroid cancer as well?

From what I hear and read, this isn't even the tip of the iceberg compared to what many patients, especially women, have had to go through with their thyroid to get answers. Mine seems terribly expedited compared to what they've had to suffer. When I think back to how long I've felt fatigued and slowly been gaining weight and lots of other symptoms, it's been almost 5 years. However, I've had as much trouble convincing myself that something was wrong as these other women have at convincing their doctors that something was wrong. And, for that...I do feel like I'm not any better than the doctors who have been ignoring those women's symptoms. I can't blame a doctor for not treating me...I can only blame myself.

A 'Thyroid Storm' of sorts

I'm not literally in the midst of a thyroid storm, obviously. But, I have just had an emotional storm that from what I've read, may or may not have something to do with my thyroid.

Earlier this evening I had an emotional outburst that has now left me emotionally, as well as physically drained. In retrospect, it was an over-reaction to a tense situation. I wish I could say that this just isn't like me...but, unfortunately, it's something to which I am no stranger. This has been happening for longer than I had realized. It's a pattern that happens when I perceive myself to be overwhelmed with stress.

What I don't know is whether or not this is a normal response to stress given the situation and my recent diagnosis and the speed at which this whole thing is going....or, if it's perhaps part of a whole hypothyroid syndrome. I certainly have read that with low cortisol levels and hypothyroidism these sorts of emotional storms can occur. But, I don't want to use this as an opportunity to excuse my bad behavior. Honestly, I just want to feel better and experience some calmer weather.

Thyroid symptom or not?

I've noticed this new symptom lately when eating/chewing something. It feels as though the muscles just under my mandible (lower jaw) become fatigued while chewing just a short while, as though I were chewing a tough piece of steak or something for an extended period of time. Almost as though the accessory muscles I'm using to chew just can't quite help as they should or something. I don't know if it has anything to do with my thyroid or not, but I've never felt that before...unless I were trying to chew a really tough piece of steak...for an extended period of time.

I've tried to do a search to see if that's a reported symptom or anything, but I've yet to find it. Perhaps I've become so lazy that I don't even want to chew anymore. At any rate, just an interesting observation I've noticed lately.

What to expect when you're not expecting a thyroidectomy

Since I just found out yesterday that my thyroidectomy was scheduled for a week from now, I did still have a couple of questions. Such as: Do I have to stay in the hospital afterwards, or can it be an outpatient/ambulatory surgery? No? Well, then how long will I have to stay in the hospital? When can I go back to work? Am I going to have to do anything else after the surgery, such as radioactive isotope (RAI) therapy? How big is the incision going to be? When can I expect to start feeling 'normal'/decent again after surgery?

Some questions were answered, but there are still a lot of unknowns. Looks like I'm going to have to just sit back and be patient and take things as they come. Sounds easy enough, but it's something at which I'm not that well practiced. Here is what I do know: Yes, I do have to stay in the hospital, for about 3 days. I will have to be off work for at least a week or more, depending on energy and pain levels. And, the rest, we don't really know until we get into it and see how involved things are and how things go.

So, with that, I am hopeful to get out of the hospital by Sunday, go back to work somewhere between a week or two, an incision that heals without incident, and minimal trouble regulating the Synthroid or whatever they put me on and a speedy recovery. However, I resolve to be flexible and not expect these things. I am going to try to remember that there is a difference between being hopeful for certain things to happen and expecting things to happen. It's an easy leap and a slippery slope to go from being hopeful to expectant.