Friday, September 24, 2004

The Beginning...

I have decided to keep track of my doctor appointments, diagnosis, and so on here so that I have a "written" log of everything that happens. I don't even know where to start or HOW to start at this point. I hope to make this blog more uniform later on but would like to make sure I don't miss posting/saving anything in the meantime.

On September 2nd, 2004 I went to the Walk-In Clinic because my ulcer pain was very bad and I couldn't handle it anymore. I took Lil Man with me just to get him checked out for the stuffiness and runny nose...figured why not you know? So he got a prescription for congestion, no biggie and he was done. The physician's assistant prescribed me Tagamet for the ulcer, checked my neck, got a little weird on me, ordered an ultrasound of my throat for the next day, and told me to make an appointment for two weeks.

So he goes out, gets my prescription, comes back in, and tells me that we're going to get bloodwork for testing my thyroid levels. I reminded him to NOT forget to do a pregnancy test (breastfeeding can throw things off and freak you out when you know you shouldn't be). I go, get blood drawn, and leave.

Friday, September 3rd- I show up for my u/s and find out it is in another building. I tell them I found out that the Tagamet excretes into breastmilk, is not recommended on several medical sites as well as NOT recommended by the pharmacist who filled my prescription for breastfeeding mothers, and ask to find out if there is something else I can take. I also asked if they had my pregnancy test results as well. Doctor is out to lunch come back after my u/s.

I go over to have the ultrasound done and the girl is kind of being a weirdo. She starts looking at this thing in my throat and goes "WOW" and then a minute or two later "Oh my goodness!". I do a sideways glance trying to see but can't. Then a few minutes later I get "I can't believe nobody ever said anything about this before now!". I tell her that I had my thyroid levels checked 2 years ago, the doctor blew it off, so I figured it was nothing and did too. She then goes "How bad are the symptoms so far?". I looked at her and said "I don't know what it is YET!". To which she gives me a funny look and plays stupid on any questions I have.

That was bad enough but then I go back over to the doctor's office and find out that the doctor STILL is not back from lunch to please call later. I tell them I need to know about the Tagamet. I call later and THE DOCTOR HAS GONE HOME FOR THE DAY AND SO HAS HIS NURSE!!! No call no nothing!! I ask again for my test results and am told that no one in the office can give me that. So the girl says she will put the file on the doctor's desk so he calls me first thing Tuesday morning.

September 8th update- (I edited out a few things so I'm sorry if some of this doesn't make sense anymore) This morning the supervisor Wendy called me and asked me to tell her the story so I did. She said that she got my message last night around 9pm and she was upset for me. She said that she was so sorry that this happened and that this is not how their clinic is run or the impression they want to make upon people. She told me that she would find out the preg test results and have the Clinical Supervisor call me back... she promised I wouldn't be ignored again.

The CS, Stacy, called me a little bit later and told me that the pregnancy test was negative to which I almost sobbed "THANK YOU SO MUCH" and she giggled a little. Then she said that she also had my u/s results if I would like them. She told me that I have FOUR nodules on the right side of my right thyroid and that I now must see an endocrinologist for a biopsy. She said that the chance of cancer is really rare (which I honestly haven't been worried about that anyway). This town has one endocrinologist so I have an appointment with her on September 23rd. She will stick a small needle into my neck to do the biopsy and we go from there.

So many different things could happen so I will just wait until my appointment and go from there. Hopefully there's some small simple thing that is all I will need and the bigger more serious things won't even come up.

September 22nd update - They didn't do anything but feel my throat, say I would need to see someone else for the other symptoms I'm having, and schedule the biopsy for Friday. Very disappointing and frustrating to say the least.

September 24th update- I had my biopsy done. There are now 12 little needle holes in my throat. Quite lovely really. Goes nicely with the purple and blue bruise that is forming around them. Ugh.

Finally found a few things out- Two of the nodules are at least 4cm wide which is pretty big. One is one the middle of my thyroid gland and the other three are on the left of it not the right as the doctor's office told me. The one in the middle is very vascular meaning it has alot of blood flow to it. The doctor had never seen so much blood flowing to one of these things.

Basically it has taken on a life of it's own and instead of my body fighting it because it doesn't belong it has accepted it and treats it as if it belongs. The middle one is the largest one btw. One of the ones on the left is pretty solidly calcified meaning it's hard as a rock. There is no draining it or shrinking it. A second one is fast becoming the same way.

So this means a few things. One- the doctor is worried about cancer again so next Friday we will get the biopsy results. I'm not too worried about it though it's just a little scary. Two- I DEFINATELY have to have surgery done to remove the nodules. The problem is going to be that middle one and there is a good chance I could have some vocal damage. If it was on the left or right it wouldn't be such a big deal but because it is right in the middle it ups the chances for things being complicated. The fact that this nodule has blood vessels going to and feeding it ups them even more. I now have to start cutting back on Lil Man's nursing and try to wean him.

This more than anything breaks my heart. I will be talking to the doctor next Friday at my appointment and if it comes right down to it I will be putting off the surgery for an extra month or two. It's going to be bad enough that I will be gone for a night or two in the hospital after the surgery but I can't see traumatizing Lil Man suddenly. If I put it off for a month or so it will give us time to wean slowly and therefore not so hard on him.

She can't do anything right now for my breathing or swallowing/eating problems. There's just nothing that can ease the pain or pressure. If they had just been filled with fluid it would have been much easier but hey, then it wouldn't be ME and MY luck would it?

Oh and what caused this considering my thyroid levels are perfectly normal? No clue. She said genetically it's like cancer...a genetic mistake that happens and it grows, forms, and does all the things cancer does but without the life threatening disease thrown in (this is IF the nodules are benign). She says you either get these and they form cancer or you get these and they are benign but they both start and live the same way. Lovely thought isn't it? LOL.