A Hunka' Hunka' Burnin' Scar

Here is a picture of my neck 15 weeks post op. It still hurts sometimes. It reminds me that I will never be whole again.


I am definitely a pale face. I have lots of freckles (less than I did as a child though), blue eyes, and reddish brown hair. A lot of peopl say I'm a "Ginger". I rarely tan, I generally just burn if I am careless or foolish with the sun. So I keep sunscreen in my purse, in my car, in my husband's car, and always at home too. If you need sunscreen I usually have some.

Colorado is a great place to live. Particularly Colorado Springs. We don't have the smog and traffic and Cost of Living of Denver, but it's close enough to enjoy still. We don't have the heat and desolation and dessert conditions of Pueblo, but can still enjoy the reservoir whenever we want. Colorado Springs has lots of sunshine throughout the year, but it usually is still comfortable.

This weekend was very hot. My youngest son Noah had a soccer tournament and soccer fields are not known for their shady trees. So, I slathered on the sunscreen on Saturday two times (he had two games) and although I felt like I was baking, I was so proud of myself for not getting sunburned. Yea me! On Sunday, he had to be at the field at 7:15 a.m. for an 8:00 a.m. game. I was very sweaty the day before, so I made sure to wear cool clothes on Sunday. However, it was actually a little chilly in the morning. The wind made it cool and the clouds blocked out the sun every now and again. Some people were actually covered with blankets. Noah had to be back to the field at 1:45 p.m. for his final game. So, I slathered up again. Somehow I got burned during his last game. It was hot, so maybe I sweat off my sweat-proof sunscreen? Who knows, but not my scar is burned and I am all worried. What happens if you get a sunburn on a fresh scar? My surgeon warned me to keep sunscreen on it and/or out of the sun for ONE YEAR! Oops, it's only been about four months.  Guess I will find out soon enough.

By the way, today's high might set a record at 96 degrees.

Cautiously Hopeful

I have started to see a very, very tiny light at the end of this dark tunnel. I am having more good days than bad. I have even lost some of the weight I gained recently. I am becoming cautiously hopeful that I am on the right path to recovery and "normalcy", whatever that is. I still get a little grumpy and irritable some days, but maybe THAT is normal? Who knows? I used to know my body. I was knowledgeable about what was really me and what was a symptom. Then I blamed every...single...negative... issue on my thyroid. Now, I just don't know. But I do see a very tiny flicker in the darkness. I can't tell how far away it is, but the road doesn't seem quite as scary as it used to. Below is a picture of my incision at week 11 post-op. Doesn't look much different really. I still have the irritated dry skin underneath. The funny thing about all of this is that I don't mind it most times. I usually wear it like a badge of courage   reason. I hope that it explains my sometimes erratic behaviour, my weight gain, my mood swings, and the other underlying problems. Yep, I usually like to show it. Crazy, huh?

Already?

Over the last few days, I have gradually been feeling more tired. Last night I really had trouble sleeping and woke up at 2, 3, 4, 5, and 5:20! So, now I am worried that my feeling better (a little) was only temporary. I am starting to feel sad again, irritable, tired, and unfocused. Grrr, I had hope that I was still on the "up" side of my roller coaster. Here is a look at my incision at 7 weeks post op.

It's going to be a long road--I know this. That doesn't make me any less impatient or grumpy about it all. I have gained 15 pounds in six weeks. At this rate, I will be 300 pounds by May of next year. No, I'm not pregnant I am just getting to be VERY fat! I won't lie and say that I work out and carefully eat ONLY healthy foods. I don't work out, but I am active. Even though I am exhausted much of the time, I rarely nap or lounge on the couch watching TV. I have four children and I also work full time. So, that means lots of cooking, cleaning, laundry, and taxi-ing the boys. So I won't say that I am sedentary either. As far as diet goes, I could be worse. I don't eat sweets or desserts often and I try to stick to whole grain or wheat grains only. I do eat at least two or three pieces of fruit everyday. But I am tired all the time, which leads to convenient and not smart choices for breakfast and lunch sometimes. I know this, but again, I could be a lot worse. So, how on earth am I gaining weight so fast? I know my thyroid is gone and it is probably to blame but that doesn't make me feel any better! I am now a wonderful size 18 and am heavier that I have ever been in my life (even more than while pregnant). How fun! I don't have a lot of money right now, but I cannot resist the urge to buy new clothes that fit. Clothes that don't strain when I try to zip. Clothes that might flatter my body more. I look for sales, but if it makes me more confident, I want it even if it is full price.

So, with this rapid weight gain, where is my motivation? I have NONE. If it is my lack of thyroid causing this, then what is the point of dragging my exhausted, busy body to the gym? Or finding the strength to resist fried foods or snacks around the office?

My lack of self-confidence effects nearly every facet of my life. I sometimes wish winter would have stayed longer so that I could wear baggy coats to cover me up when I go to my son's soccer games. I hate walking in front of people, even at church! I would rather sit in the last row, with a bad view and lots of distraction than letting my friends see my rear on the way toward the front. I hate walking around at work and wish I could just sit behind my desk, waiting on employees to come see me.

As Resurrection Sunday was just yesterday, this reflecting does nothing except make me feel guilty. MY JESUS was sent to earth by MY GOD to save me. To save me at 145 pounds or 300 pounds. What is wrong with this picture??? Why am I not feeling more grateful and blessed?

Evidence To Back Me Up

Our I.T. Department was kind enough to clean and dry out my cell phone, so I have my mind back a little. I am just feeling so poorly most of the time. The mornings are usually ok, but after lunch- watch out! I called my doctor's nurse again yesterday afternoon. She told me I still need all the Vitamin D and Calcium I am taking, which stinks. More pills. She also told me my TSH was 15.8!!! Wow, now that is some evidence to back me up a little. I am NOT crazy, I am just imbalanced.

Here's a little anatomy lesson from http://www.endocrineweb.com/: The thyroid gland is controlled by the pituitary gland. When the level of thyroid hormones (T3 & T4) drops too low, the pituitary gland produces Thyroid Stimulating Hormone (TSH) which stimulates the thyroid gland to produce more hormones. The pituitary gland itself is regulated by another gland, known as the hypothalamus. The hypothalamus is part of the brain and produces TSH Releasing Hormone (TRH) which tells the pituitary gland to stimulate the thyroid gland (release TSH).

The so called "normal" TSH is said to be between 0-3, but this is still debated in the medical community. If the TSH is a high #, then the thyroid is not responding to it's commands and is not producing the appropriate hormones. Obviously, I have no thyroid now, so I expected to see some high numbers. In January, my TSH was less than 1, and I felt pretty good. I was taking 100mcg of Levoxyl daily to replace the deficient hormones. Yesterday, my doctor upped my dosage to a mere 150 mcg. I know I am complaining, but I figure it should at least be doubled. If I have 15x's higher TSH, I would think doubling my dose would not be overkill. I haven't had this doctor for very long, so I am trying hard to trust her judgement. Some typical symptoms of overmedication of levothyroxine include: anxiety, difficulty sleeping, elevated pulse, weight loss (or in some cases, weight gain), diarrhea, muscle aches and weakness, hair loss, fatigue, exhaustion, irrtations or sensitivity in eyes or neck area, among others. Since I am already having many of these symptoms, I am willing to take the risk, but I must yield to my doctor's judgement. We can argue about this later.

I hope to feel the effects of my increased dose in a couple of weeks. I know that the full effect could take 6-8 weeks, but surely I will tell some difference in 2 weeks. It was only about 2 weeks after surgery that I was feeling some symptoms of a low dose. It is hard to differenciate between surgery fatigue and low tyhroid fatigue initially. I guess only time will tell.

Crying Over Spilled Milk (With Coffee)

I am so fortunate to have a loving, patient and giving husband. I have been testing his patience lately I am sure. This weekend I fell UP the stairs for no apparent reason, and then I fell down the stairs too. The same day. For no reason at all. I guess my balance is off. I blame my missing thyroid for this too. I wasn't in a hurry, I wasn't carrying anything, I wasn't on the phone or distracted in any way at all. I just fell. Hard! My lower back hurt so bad that evening, but thankfully the pain has subsided now. Pain does not help with my irritability.

Each morning, my lovely husband wakes me up with coffee just the way I like it and a sweet kiss. It is my favorite part of the day. Not the waking part, but the love part. :) He doesn't mind that I have morning breath or bed head. This morning was no different than any other morning. "Good morning Love", smoochie smoochie. So, I sit up and take those first precious sips. I hear my husband leave the house for work. Ahhh, coffee. It usually is a great way to start the day. This morning something bad happened. Normally it would just be an annoyance, but today I couldn't handle it. I get occassional weakness in my arms these days. I think that must be what happened. My very full coffee mug fell out of my hand. I just lost my grip for no reason at all. My coffee went all over. The wall, the lamp, my sheets, the floor, and the worst- my cell phone. I absolutely LOST IT! I immediately started crying uncontrollably. I couldn't stop. Not even long enough to take a shower. Time started to run out on me. So, I called my husband, eager to hear his calming reassuring voice. As he was talking to me, I realized that I was behaving like a five year old girl who broke something of Mommy's. This realization did not halt the crying, it only made it worse. I still don't know how I managed to get ready for work and get there, but I did. Somehow. My cell phone has everything in it. My Outlook calendar reminds me of things I would forget (which is everything these days). So now, my phone doesn't work. Now what was holding me together is not working. I am lost yet again!

I have lost myself! I don't recognize the woman in the mirror. The VERY heavy woman with dark circles under her eyes. The woman that rarely smiles, and snaps at everyone. The woman whose clothes don't fit anymore. The woman who is SO tired that she sometimes doesn't care what she looks like, even when going to work. The woman who has no motivation, no spirit, no life, no energy, no control over emotions, no memory, no concentration, no stamina.... and no joy! Who is this person? A month ago she was stressed about her upcoming thyroidectomy and the possible big "C". But at least I knew who she was. She was recognizable. That was me. Who is this woman now? She is 10 lbs heavier and looks and feels like all joy and energy and life has just been sucked out of her. I should be joyous. The tumor was benign. I am healing. My neck hardly hurts at all anymore and life can go on. But it's not.

I know that my missing dear thyroid is why I am not me. I had blood tests last week. So, I called my doctor to check on it. My meds take a while to be effective. Which means, even after I get my dose adjusted I have more waiting. I had to leave a message for her nurse. I am sure that I sounded like a lunatic. "Help! I am not well. Please hurry and adjust my meds."

My husband misses his wife, my 4 boys miss their mom, my employer misses their competent employee, and I MISS ME. Please help me find her!

The Blame Game

I don't know about you, but information to me can sometimes be dangerous. Over the least several years, I have read a lot about Hypothyroidism online. I could tell that some of the sites were not good resources, so I tried to discard that. Hypothyroidism is a chronic disease. Even without a thyroid now, I am still considered hypo. So here are what I know my symptoms are for sure, at least for today. They seem to change frequently:

• Dry skin
• Fatigue
• Difficulty sleeping
• Depression (not always)
• Weight that just won't leave
• Brittle nails
• Brain Fog/Memory Loss
• Irritabilty
• Diffulty regulating body temperature

The Thyroid controls SO many functions of the body, that when things go awry, I always blame it. Some other symptoms that I could have include:

• Weakness
• Increased difficulty losing weight
• Coarse, dry hair
• Dry, rough pale skin
• Hair loss
• Cold intolerance (you can't tolerate cold temperatures like those around you)
• Muscle cramps and frequent muscle aches
• Constipation
• Irritability
• Memory loss
• Abnormal menstrual cycles
• Decreased libido

Can you see why I always blame my thyroid? It's really hard to know if there is something wrong with me. I can almost always chalk up my symptom to the thyroid. I have recently had a lot of pain in my lower back, nearly at my tail bone. At first I just assumed that it was because I was not very mobile in the weeks following my surgery. But then it got worse, much more painful than my surgery. So I finally went and had it checked. It was a pinched ciatic nerve. Apparently this is fairly common for people who have longer surgeries. Mine was nearly five hours. Dr. Arguello did say that they had to "beat me up" during surgery to get all the tumor out. Oh what fun! I get to do some exciting exercises every night. The good news is that I should feel much better in a few weeks. Now I have 2 additional pills to add three times a day to my current pharmacy. I do not know what I would do without quality insurance. I am very blessed with my job and benefits.

My New Favorite Word- BENIGN

I should have updated my blog much sooner, but I've been busy--- celebrating! Yes, the pathology results are in and are benign. Whew. When I sat down for my appointment, Dr. Arguello starting saying lots of big medical words- hurtle cells, neoplasm, parathyroid, follicular, etc. Blah blah blah! It was like listening to the teacher on the Peanuts cartoon. I am usually focused at my medical appointments but I seemed to be in a fog, listening for only two words- benign and malignant. Finally, I just interupted and asked what it was. Yes, it was benign!!! Woo hoo! I felt the weight of the world lift from my shoulders. After that I was able to pay attention and found out that the tumor was much bigger than he anticipated, it was actually 4.2 cm instead of the ultrasound diagnosis of 3.6 cm. He said that it was everywhere! He even had to scrape it from the base of my tongue. So, it is reasonable that I am still so sore. For right now, Dr. Arguello doesn't think the radioactive iodine is necessary. We will just follow up with another ultrasound soon. He ripped off the steri-strips and was pleased with the way the incision looks. He told me I could go back to work the following week and I could drive again immediately. Yeah!

So, I went back to work a couple of days ago. My head feels very heavy at the end of the day. I wonder how much my head really weighs? It is SO hard to be back and try to focus and remain upright for 8+ hours. I went home early on Monday and Tuesday and I think I will just plan on doing the same for the rest of the week. I forgot to mention that soon after surgery I had some twitchig in my lips and arms and fingers. This was due to a calcium deficiency. So, I am taking lots of Tums right now. This is in addition to the other meds I am on. I used to hate taking anything and rarely even had a Tylenol for a headache. Now I take 50,000 units per week of Vitamin D, and 3,000 mg of Tums (calcium), my Levoxyl (which hasn't been adjusted since surgery), and my generic Yasmin. I have also been eating ibuprofen like candy for the pain because I hate the way the Ultram makes me feel so jittery and restless. I am still not sleeping well, but I also have some new pain in my lower back, so who knows what the cause of that is.

I am starting to get concerned about the incision though. I still have irritated skin beneath the incision and the incision looks too red to me. It is exactly the same length so I don't think it was the adhesive. I will call Dr. Arguello's office if it doesn't go away soon. Prior to my surgery, I scoured the internet searching for pictures of the other people's incisions. So, below is a picture of my neck 19 days after surgery.

I will see my endocrinologist, Dr. Henley next week. I am sure she will order at least a TSH because I am still taking just 100mcg of Levoxyl. I already have an order for a calcium test from Dr. Arguello, but I have been procrastinating. I foresee lots and lots of appointments in my future and I guess I am just stalling. I'm afraid that the calcium has not leveled off and that I will be eating Tums forever in addition to everything else. I guess I won't know until I get the test done, so I might as well do it, huh? I know it could be worse, but I used to depend on my body. I used to trust that it had everything that it needed. I am pretty active and generally eat healthy foods, so it is frustrating that I need so many pills to make my body do what it needs to! Guess I should get used to all this. After all, I am only 33 and have lots of time left to live!

Adios Thyzilla

Goodbye my dear thyroid. Dr. Arguello cut you out nearly one week ago. Initially he cut out the left half like he planned, but he didn't like the looks of the tissue. He said that he saw Hurtle neoplasm cells, so while I was still "under", he went back in and took out the right half as well. Dr. Arguello said the tumor was huge, very agressive and looked like it had legs because it was spreading out. He also called it sticky and said that he has to literally scrape it off my vocal cords and trachea. Uggh. So, I went in on Friday and was released on Sunday morning. They gave me Ultram for pain, but I really don't like the way it makes me feel, so I try to only take it at night. I went in on Tuesday for a follow up. He removed the bandages and said the incision looks good, but no pathology results yet!! He seemed frustrated like I was but said that he does not want to rush them because he wants a thorough diagnosis. I will see him again on Monday or Tuesday. Below is a photo of the incision from this morning, post surgery day six. For those that do not know me very well, the rash is not really a rash but my lovely birthmark. I guess I should be used to people staring at my neck area already, huh? There is a great website called "Dear Thyroid" that sells some really cool thyroid stuff. They have a shirt that says "It's rude to look at my goiter, my breasts are down here." It made me laugh so hard that it hurt. :)

Ok, tired now, so that is all I have. These days walking up stairs makes me sleepy, so I need a nap now.

What is significant about being 33?

I like my surgeon, Dr. Arguello-Rudin. He is funny, blunt, scruffy, kind, patient, and not at all politically correct. He asked me my age and when I replied with "33", he said "oh, the same age as Jesus." That one threw me off a bit. Wasn't that the same age Jesus was when he was crucified? I mean, Jesus was also 1 yr, 15 yrs, 21 yrs, etc. too, so why mention it? I think he was just trying to lighten the mood. I just met him yesterday. After we spent a few minutes talking about my medical history, he examined me. Then we sat down again and he said "let's get rid of this sh*t". See why I like him?

He still plans on taking only the left half of my thyroid, but is not opposed to taking it all. He ordered some blood tests and a chest xray. The chest xray will show if there are any suspicious spots on my lungs (just in case). Two of the blood tests he ordered I have never had before- Antithyroid Antibodies and Anti-something-globin. He said if these tests show a level of more than 32, then it is most likely cancer and he will take the entire thyroid out. He also said that if he sees any nodules or suspicous tissues on the right side, then he will take the entire thyroid out. If everything looks healthy on the right side, then just the left will come out initially. He promised me that he would personally take the tissue down to pathology after surgery to try and get some results. However, he also said that sometimes even then they can't tell. So, there is still an awful chance that I will have half of thyzilla removed, start to recover, and then go home only to return for a second surgery to have the right side removed. That would STINK! I really hope that doesn't happen.

So, my surgery is on Friday, February 19th at 7:30am at Memorial Hospital Main on Boulder St. I have to check in at the regretable hour of 5:30am. Ugh, well I am not sleeping right not anyway, right? If you would like to visit, I am sure that I will be up for it that afternoon or later. You can call my husband Andy if you are not sure of the timing. His number is 719-213-4807.

Thanks for all the warm thoughts, kind wishes, and prayers. I appreciate it more than you know. Now I need to go and prepare to be out for a while. See you soon!

The Beginning

In search of information online regarding my thyroid condition I found a few helpful blogs. Reading them was comforting and it felt like I was reading a diary of sorts. I think that perhaps having my own blog might help me get a handle on my emotions and be healing for me. My sister-in-law has a blog and it seems that she is able to process some feelings and share them through her blog. I wonder if anyone will read this? I wonder if anyone cares to hear my rants? Maybe a newly diagnosed patient will want to hear a similar story? I guess it doesn't really matter who reads it, does it? So, off I go:

I was diagnosed as hypothyroid in 2007 just after I got married. Fun time, huh? I went for my usual check up and told my doctor I was tired and had dry skin. During the next 2 years, my levothyroxine dosage was adjusted (increased) about 5 or 6 times. In June of 2009, I felt like my throat was swollen. Was I growing an adam's apple or something? It looked and felt like it to me. So, I made an appointment with my GP. Unfortunately, she didn't think it was swollen, but checked my TSH levels and said "oh, you must feel like that because you need another dosage increase." I shouldn't have believed her. I should have trusted my instincts, but what do I know? I never went to medical school- she did!

Well, I had a very busy fall in 2009, so I delayed my checkup until the beginning of January 2010. I went back to my GP and during the physical she looked at my new adam's apple and said "hmm, what is this?" Well, apparently my new lump had grow to a size that she, my oblivious GP, finally noticed it. She ordered an ultrasound and said that she would probably refer me to an endocrinologist once she sees the results. The day after my ultrasound, during which the radiologist also made annoying murmurs, the results were sent to my GP. She said "yep, you have a nodule. I will send your records over to a specialist."

My new endo ordered a biopsy-which much more painful than I expected. I received the biopsy results yesterday (Tuesday, February 9, 2010) that revealed hardly any more information. The tumor/mass/lump/nodule/whatever is solid 3.6 cm follicular neoplasm. Apprently the same cell types that the tyhroid is made up of. So, it could be a group of rogue rebellious thyroid cells or it could be follicular cancer. My next step is to meet with a surgeon (on Monday, Feb 15th) and get my surgery figured out. It really sucks that I won't know if it is cancer until after surgery! At lease things are moving though. It seemed to take FOREVER to get the biopsy scheduled and then wait even longer for the results. Eeeeck, I used to think I was a patient woman. Afterall, I do have 4 boys!

So this is where I am. I am trying to plan out my next few weeks and any other life adjustments I need to make. I decided to withdrawn from college for a little while. I have also now decided that I need to stop volunteering at church for a bit. I think that is all I can cut out myself, I still have my family and work. Now I can let my surgeon cut out half my butterfly. I am thinking about a new tattoo with lots of butterfly's to help with my...er... loss. The thought of that does cheer me up a bit. :)