In February of 2011 I moved from the North Country to where I reside now. Finally decided I could trust the Drs down here and made some appointments. Feeling off and awful for about five years and treating myself with ibuprofen and Gas-x. I decided it was at least worth a try because my symptoms were just get worse by the day. So found a Dr explained my disaster of a mess to her and she did her best to try to figure me out. The big question arose "have you ever been tested for Thyroid issues?"
The beautiful image of a Thyroid
Off to the labs for blood test I went. So thankful I don't have a fear of needles. Little did I know this wouldn't be my last poke. So I got a call a few days later. Your thyroid levels are off but you are on birth control and that does throw your levels off. So come in again for another blood test to see if we have a change. Two more blood test later my TSH levels were so high my Dr said you really need to go see and endocrinologist. She recommended one in the group but the Drs hours were so inconvenient 10-3.
I just started my first real big girl job as a temp-perm. It was so important to not take time off from work etc plus being I wasn't full time yet I didn't feel comfortable doing so. But I still needed to see an Endo. By this time came along I had lost the health insurance that I had at the time. Medicaid (because I was making "too much money") get that one. So this was in April.
Everything then got swept under the carpet because you can't get care if you don't have health insurance. Well you can.. You just have to pay outta pocket. Anyone that knows me, knows that is completely impossible. So I patently waiting until my company offered me a full time position. The day I found out I was offered a full time position my game face was back on. Made an appointment for the Endo who accepted the new health insurance I was going to have and then made sure I have the insurance info for the appointment upon my arrival.
I went to WestMed right down the road from work. Had great hours went on lunch break didn't have to worry about interfering with work and taking time off etc. So my first appointment of course I'm feeling awful. When I saw awful let me just list out the amazing daily symptoms I was experiencing. Bloating (like 6 months pregnant looking) migraines, hair loss, heart racing, shortness of breath, constant weight gain, hot cold flashes, ALWAYS tired and I'm sure there's more but you get the point. I was a healthy, working out 23 year old. This just doesn't make sense. I explained my bloat ness to the Dr and how extremely uncomfortable it was how I just can't bare the pain anymore. His first reply was are you sure you're not pregnant? I said no. He was like have you had a test? Yes, several. I said just because you see a female in her 20'a with stomach pain does not mean every single one is knocked up. I was so offended. On to the next. So he asks some more questions ask about family history. Well my paternal Grandfather had Thyroid cancer. He noted and said okay. I bright with me all my old blood test and he said to me "well your blood test show you are have a hyperactive thyroidism but what you are explaining to me is hypo thyroidism so I just feel you are not a case that can be treated with medicine" I was livid. I said wait so what you're telling me is my blood test are showing my numbers are off and you're saying there's nothing you're gonna do about it? I said there are other test you can run and do. So do them. I've had enough with the bullshit!
So he said I'd like my own blood test and I want you to get an exam of your thyroid called the uptake I-123. I scheduled the exam it had to be in the morning only so 8 am it was. The first morning was to swallow a radioactive iodine pill to work with the test. The second morning was a 45min exam of an extremely close up machine in my face taking tons of images of my thyroid. A week goes by no results. So I call. Leave a message for the Dr. After harassing the Drs office for about a week straight I FINALLY got a phone call. It went a little like this. So we found a hard cold nodule on your thyroid. It didn't light up with the exam and its 2.3cm. Did a little research on all of these things nkn I have scheduled an ultrasound for further investigation to get a better look at this. So off to the ultrasound I go. Ultrasounds usually don't take too long. Well I was in there for an hour and a half. The ultra sound tech send a long time on the right side where the nodule is. I tried to ask the tech but of course she couldn't answer any questions. I left there a mess I knew something wasn't good.
The Uptake I-123 exam
The ultrasound was at WestMed same Drs office. It shouldn't take too long for the Dr to get the results. Anxiously waiting the results of the test I called they said okay we'll leave a message for him. A few days go by. I call again. Nothing. I called the next day and demanded the Dr call me back before the end of the day. It was Labor Day weekend so I knew he'd probably be leaving early. I get a phone call back from the secretary saying oh he's left for the day blah blah blah. I said you had one job and that was to have him call me back with my test results before he left today. Call him on his cell phone and here's mine I would like to speak with him.
Ultrasound of the neck
6:00pm Friday Labor Day weekend I finally get the call. Hi it's Dr Weiser sorry I left for the day at 3pm blah blah blah. I said I don't care. What was the results if my test? He said well not good. It's confirm the nodule is not moving its hard cold and I need you to get a biopsy. I said okay. I can come in next week but I leave Thursday and come back Monday. He said oh well I left today for a 2 month vacation. I said okay so who else can I see in the office then in your absence? He said oh it can wait till I get back its not an emergency. That's when I flipped out. I said you just said you might have cancer but its not a big deal wait till I get back to find out? Are you fucking kidding me?!!!
Needless to say Tuesday morning I was in that office got all my test and paperwork and ran far away from there. I was leaving to go to beautiful Charleston SC. So I put off looking for a new Dr for a few days and I needed to kick back and relax. Didn't go without my gas-x or ibuprofen though.
Gorgeous Charleston, SC.
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Returned from my beautiful vacation and asked everyone under the sun for a personal referral to a good Endo. I didn't want to deal with a crappy Endo again. Just too stressful as you can imagine. So a co-workers dad referred me to go to my fabulous Dr Chee Yeung Chan. I got in with him at the end of Sept. he looked at my paperwork said I don't even have to ask you how you're feeling. The test show that you shouldn't be feeling good at all. He spoke with me for a few minutes about what was going on etc he told me believes I've gone years with not being treated for hyperactive thyroid and that I also have Graves Disease, an autoimmune disorder in which the body produces antibodies to the receptor for the TSH. he explained synthyroid the importance of it with thyroid issues and how to treat Graves Disease. He also said we need to figure out what is going on with my nodule because that's another issue.
Oh and I didn't mention I was loosing my voice daily. I'd try not to talk one day try to talk less etc. Just think about when a little teenage boy is going through puberty, that's exactly what I sounded like. So embarrassing.
My biopsy was scheduled for October 2nd. I was so nervous about this. Think about it. I've had tons of needles poked in me at this point but I didn't have any poked in my neck yet. I was nervous and sick to my stomach for the pain and because of the biopsy itself. Kev of course came with me. It was a FNA biopsy, numbed the surface area and had to take three samples. Let me tell you it was a fast painful procedure and thank god it was. I didn't breathe during it. The procedure was over and off to work I went scarf, little mermaid ice packs and hiding in my cube. I was told I would get the results on the 4th. So by 4pm with no phone call I went into deep deep panic. I called the Drs office they said oh the results aren't in yet but I'll let Dr Chan know you called. Five minutes later I get a phone call its the Drs office. Alyssa we need you to come into the office ASAP we have an opening tomorrow at 2. I panicked. I said okay. But are the results in? I'm not coming in if they're not in. She said no but they will be we need to discuss them with you. My heart sank I didn't eat I couldn't function.
FNA Thyroid Biopsy
The next day at work same thing. Didn't eat sick to my stomach all day. Impatiently waiting to get on that train and get to my Drs appointment. At the Drs appointment they take Kev and I in immediately. They have three chairs set up around the computer in the patient room. I knew something wasn't good. I knew I wasn't going to hear what I wanted to but I didn't want to loose myself yet. He said well its been confirmed you have papillary carcinoma cancer. He went on to talk about what the next steps are, how it's not aggressive and that it's not like other cancers no chemo no radiation. It doesn't grow as fast as the aggressive cancers. I kept myself together until he asked me how I was doing. If I needed a second to take it all in and I lost my self. I looked at Kev and cried like a little baby. Thank god for Kev, his memory and all his other great qualities because after that everything was a blur I don't remember a single thing. Except getting into the car with Kev and us both in such shock we sat there for a few minutes bawling.
We had a lot to do. I had to find a surgeon I felt comfortable with aka interview surgeons as I called it. I had to be the bearer of bad news and share with everyone my test results. Nobody knew I was even going for test results because I didn't want to tell anyone due to the fact that what if it wasn't cancerous. No need to scare and share that with everyone. Let me tell you, it took a good week to tell everyone I thought I needed to tell. Such a long process.
I interviewed one surgeon he was very nice. I had him nose scope me because I had no voice at the time so I was concerned and scared. For those that do not know your thyroid wraps around your vocal cords. He said my vocal cords looked great. Took my notes and kept them in my handy dandy life saving note book and went on my way. I was told by friends parents and heard of Memorial Sloan Kettering. THE CANCER HOSPITAL. I looked into the type of surgeon I needed head & neck and did some research. I saw a Dr that stood out to me. He was a top 10% Dr at the hospital, he was certified in plastic surgery and he specialized in vocal cord paralysis. I also liked that he was still the head Physician in a ton of research and development projects that I found online. Oh the Internet it's a wonderful thing sometimes.
I had to call and make an appointment to see Dr Wong, this dream Dr I found. Of course the day I was trying to make the appointment I barely had a squeaky Mickey Mouse voice. The receptionist kept telling me my phone was breaking up and to call back later. I knew my phone wasn't breaking up so ever so frustrated I went to a good co workers desk and asked her to call for me. Finally she got me an appointment for October 24th.
We met Dr Wong's team of nurses who asked tons of questions. Then I got to meet Dr. Wong. He was just the nicest guy. He spoke about the procedure asked if I had any questions. Boy did I have questions. I drilled him with two pages front n back. Then it was time for another nose scope to check out the vocal cords. As he's getting ready he looks at my neck and said "OMG you have the most beautiful neck creases" instance reaction hold my neck. How gross. Neck creases usually means fat. He said "I can make your incision right in the bottom neck crease and it'll blend in so beautifully" I said oh that's great, because I forgot to mention I have three things I want from this surgery. 1-no scar 2- to feel better 3 I don't want to get fat. He died. Went back to checking my vocal cords out and said they responding working and look good on the inside. I just knew he was the one. We discussed a surgery date and there was a cancellation for November 8th in the morning and it was his first surgery. PERFECT. I jumped on it. When scheduling a surgery that's important. Earliest/first one is always best. That way you're not waiting around all day to go into surgery. It was four hours later Kev and I were just leaving the hospital. Exhausting long appointment. But that it's a committed team and Dr. Not just in and out hi bye. I felt so good leaving that appointment. I knew that I was in the best of hands and was very happy with my big decision. Biggest life decision yet.
I think because the pre-surgery story is so long I will make a new blog post for the surgery to current. So Its not a mile long blog post :)
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