Sunday, August 1, 2010

Butterflies Are Free

Join in on the celebration dear friends!   The often longed-for event is about to happen..............the thyroid surgeon at University hospital said that my thyroid needs to come out and the surgery is scheduled for the 23rd!  {happy dancing}  Yay!  I'm soooooooo happy and soooooo relieved.  After almost three years and 13 doctors, someone has seen the light and said, "What's a place like this doing in a nice girl like you?"

It was relatively simple too.  First his intern and his resident came in to do an initial eval (I swear that resident looked just like Doogie Howser and was just as smart), and then the big man came in.  He grasped my thyroid from behind, pressed his fingers against the middle of my throat and told me to swallow.  My response was "Urrgk" just like it always is when doctors do that and he said, "Well, that's good enough for me.  Let's get that thing out of there".  I almost swooned.  He even laughed at me when he asked when I wanted to do the surgery and I said, "Tomorrow is good for me.  Is that good for you?".  LOL!  I swear, there has never been anyone so eager to get their throat cut than I am!

Dr R. said that he didn't understand why it wasn't removed a long time ago.  And that's what the pulmonologist said when I saw him on Tuesday.  It's the same thing that my rheumatologist and back doctor have also said.  Unfortunately, none of them were in a position to do anything about it and the ones who were (like the two previous endos and the quack internist and his PA) kept saying "It's fine.  Quit whining."   And let's not forget the other "surgeon" that the quack sent me to (who turned out to be a plastic surgeon!) who said that he was going to classify it as elective surgery. Um, I don't think that being able to breathe and swallow should be considered elective.  Ah well, karma is a bitch and it will eventually catch up to all of them.

There's more positive news about surgery and this is the part that helps me to make sense of the whole thing.  Maybe it's my Virgo tendency to rationalize things, but I believe that there is a purpose for everything.  I believe that in each turn of the Wheel, there are tasks to be done and lessons to be learned.  It's that belief that keeps me from giving up because I know that when my time comes to go to the Summerlands again, I'll be able to tell the Ancient Ones what I've learned from this turn of the Wheel.

After the surgeon agreed to take my thyroid out, he asked me if I would be willing to donate my thyroid to a cancer research study currently underway at University.  I knew immediately what he was talking about because I had originally tried to get into see the doctor who is heading up the study but he wasn't taking patients because of his research work.  I've read a lot about this research Dr H is doing and he's focusing on the molecular and cellular construction of thyroid nodules and tumors that lead to thyroid cancer.  As soon as Dr R mentioned the study, I could see the gleam in his eye and knew how interesting my thyroid could be to them with all its nodules in so many stages of cancer evolution.  I lost count of how many nodules I have after 15 so this is like giving a kid a sack of marbles to play with.  Some of them are more than 20 years old and some of them are brand new.  Some are fibrous and some are fluid and some are a mixture of both.  There are some with just a few microcalcifications and others that have a "snowstorm" of them and some without any at all.  It's like a researcher's amusement park in there!  And since my thyroid disease started when I was 8 years old and was passed down from my grandmother and my mother, it gives them a chance to work with genetics as well as cellular structure.

Needless to say, I told them "Yes!" and gave them about half a pint of blood and some other samples to go to the research lab.  After the surgery, my thyroid will go to the pathology department first so they can verify how far the cancerous cells have spread and then the whole gland will go off to the research lab to be studied.

I'm really happy that I'm going to be able to contribute something that might help the study of thyroid cancer and could even be helpful in predicting what type of nodules have the potential to turn malignant.  That's the kind of information that could result in early detection and new, proactive processes to remove thyroid nodules before they turn rogue.  Maybe I'm grasping at straws here to make sense of it all, but in my mind I feel like perhaps this is why I've had to deal with this rotten little gland for so wasn't the right time or the right place yet.  My journey has been long and frustrating to say the least, but if I hadn't gone thru all that I never would have finally ended up at a teaching hospital looking for help.  And now that I have, my rotten little butterfly gland can be a teaching tool to help other people.  If that's what it's all about, then every step of the journey has been worthwhile.

They'll be putting me on thyroid replacement immediately which is excellent news!  Most thyroid surgeons have the patient wait 6 weeks until they're completely euthyroid before starting that and the last thing I need is to be more of a slug than I am now.  Getting the hormone level regulated right away will help the recovery go faster and make for a more balanced me.  Also in the "great news" category is the fact that I won't need radiation unless they see something out of the ordinary with my lymph nodes.

{huge sigh of relief}  I know that this isn't going to fix all my problems, but it's going to go a long way toward making me feel better.  It'll get the pressure off of my collarbone and the fibromyalgia trigger point there which will hopefully help get my fibro out of constant flare.  Depending on how big it's grown under my sternum, it might open up some more space for my lungs in there.  It will definitely get rid of the pain in my throat and collarbone and I'll be able to turn my head, sleep on my side, raise my arms and swallow easily!  I've been getting really tired of strangling myself every time I raise my right arm!  LOL!  So even with the other issues, this is still going to be one of the best things that could happen to me.   I get the feeling that the doctors are going to be pretty surprised at how much better I feel right away.

In other news, I had the first spinal shots on Monday.  They didn't use the "twilight" anesthesia.....they just plain knocked my happy ass out for it.  I'm okay with that coz I didn't really want to be awake while they stuck needles in my spine.  They didn't do the 60 lumbar facet shots as originally planned.  Instead they opted to go for the big bundle of nerves at the S1 joint and my right hip.  They also did my hands while I was there.  Unfortunately, the back shots didn't do any good at all.  I woke up in pain from laying on my stomach and then on my back, and after standing up for a few minutes, all the old pain hit just as sharp as it was before.  The shots in my hands were helpful, but not nearly as much as they have been in the past.  (this was my third round of cortisone shots in my hands)   So that's a little disappointing but it was just the start.  The doctor said we'll follow up in a couple of weeks and talk about doing a second and third round of shots.  They're not real optimistic because they think it's my kidney and not my back, but we'll see what happens.  Ya know, as long as they knock me out, I don't mind if they want to do more shots.  It was only for an hour, but damn, that was the best nap I've had in a long, long time!!

On Tuesday I saw the pulmonologist for the first time.  I went in with a chip on my shoulder and told him that if he says I'm fat, he's gonna get hit.  That got his attention!  LOL!  But he *listened* to me and paid attention to what I told him.  He did a chest xray which came back nice and clean.  He said that there's still a chance of emphysema but nothing that shows in the xray.  (and that's the second one I've had come back clean)   He said that the xray does show decreased lung capacity which accounts for my low oxygen saturation and it could be due to muscle weakness caused by a long history of thyroid disease and the fibromyalgia.  I'll have a ct scan and a VQ scan done soon so they can check for sure about emphysema.  The CT scan will also see how far into my chest the thyroid has grown so that's doubly helpful.  I think the only thing that worries me about the surgery is that "worst case scenario" where they'd have to crack my sternum to get it all.  But the CT scan should give them a good idea of how much is in there and that will put my mind at ease before the surgery.  The pulmonologist also gave me the green light for surgery as far as my breathing is concerned so that's good too.  My pre-op screening is tomorrow and they'll give the final approval that my body is up for it.

So there are still a lot of things going on, but my biggest concern has always been the thyroid.  I don't care what the doctors say, I know it can't be healthy to have this thing inside me, squatting like a malignant toad in the middle of my throat and sending it's toxic hormones throughout my body.  I've been putting up with it's horrid personality since I was a child and I'm really just tired of that shit.  It's also gotten very, very crowded in here and I think that serving an eviction notice on it is the best thing ever.   So let's all do a little happy dance together and come the 23rd, we'll have a huge virtual party to celebrate getting my throat cut!


  1. I am so happy to hear that finally you've found doctors who listen to you. I will be praying for you and wish you a speedy recovery!

  2. I must say: congratulation and speedy recovery!

  3. I'm doing a happy dance here for you Deb. This has been such a long hard journey for you-I hope that the surgery goes well and I'll be keeping you in my thoughts and my prayers too :)