Doctor visit, curent medical stuff… written on the 10th… oddly just now published.

16Jan10

I’ve been holding off on posting for a while, just until I could get my thoughts more centered– I’m not sure how centered they are now, but, ey, fuck it!

So, here’s a little update on what’s been going on:
I had an appointment with my german endocrinologist last Tuesday. (Just a little background, I had been at his practice before, for my Hashimoto’s– once, last year but he hadn’t seen me, one of the other doctors had (I assume it was because I wasn’t “interesting” enough)- I wasn’t terribly impressed as they, too, just told me that they wanted to watch the tumor grow.)
I arrive at the doctor’s office a bit early (just to be safe), check in, pay the 10 euros, and sit down.  As I’m sitting, people around me in the waiting room are just staring at the scar on my neck.  Oddly enough, none of them had one!
After about 10 minutes, the doctor calls me in, and I realize that it’s the real guy this time (considered in Germany to be the endocrine-pope)!  He escorts me into his office, we sit down, and he says “so you have a chronic thyroid disease, and you’re hypothyroid”.  To which I responded, “yes, and I also have thyroid cancer”, pointing to my scar.  He looks at me and says, “well, it doesn’t say that in your chart”… at which point I gave him my medical records that I had brought with me.  He then spends a few minutes leafing through it, not reading it very well– he then comes to the part where it says what type of thyroid cancer, he writes it down and says, “well, you’re relatively low risk”.  To which I responded, “that was a T3 tumor”.  “No, you’re mistaken, that would be a huge tumor… you have T1”.  I found this funny, because I am the patient and I’ve read/heard about my tumor before.  I then showed him where it said on the pathology report that I had a T3 tumor. “Well, it must be wrong.”  At which point I translated “extrathyroidal invasion” for him, and he said, “oh!  Ok, that’s why it’s T3… well, ok, then you’re not low risk, you’re right.”
That was fun.
He then proceeded to ask me what I had done already with the cancer treatment (1 radioactive iodine treatment, attempted (but failed) TSH suppression, etc.).  He then told me that the german protocol is that one has their ablation dosage of treatment, and then, 3 months later, one undergoes a second radiation therapy which also doubles as contrast for the scan after the second therapy.  I had my ablation on October 28th (or so–give or take a day or two), which would make me due on the 28th of January.  He took about 12 vials of blood, and said that if my Thyroglobulin is “ok” I can wait until the end of the semester.  In the mean time, the university has offered to work with me on this, whether I have to do the radiation on the 28th of January, or whether I can wait a bit.  Unfortunately, Germans are radiophobes.  This means that all thyroid cancer patients who receive radioactive iodine must do it isolated in the hospital.  They put a geiger counter to you regularly and when the number is low enough (legal level), you can go home.  For me, if I have uptake from the iodine, I will be facing about 2 week in the hospital– no visitors, nothing.  (I’ve heard that there’s a possibility that one gets a roommate for the radiation… can you imagine?  Being locked in a room with someone you don’t know for 2 weeks straight?!)
Mr. endocrinepope then asked me how I was feeling on my current L-Thyroxin dose (synthroid)- I responded that I wasn’t feeling very well… I was very tired, progressively gaining weight, having some memory problems, etc.  He then said, well, you’re not hypothyroid, so move around a bit more, get more fresh air.  To which I responded, “I do exercise regularly- I am vegetarian, and I eat healthily.  My t4 is undoubtedly not in normal range, and my TSH is skyrocketing.” He said that was impossible with the amount of L-Thyroxin I was on.  We’ll see when the tests get back, but mr. pope owes me an apology, I believe.
He also did an ultrasound and said he didn’t really see much thyroid tissue remaining, and although my lymph nodes are indeed swollen, they don’t look suspicious.
I will pick up my medical records (which he wanted to read through at his own leisure) and a letter of how he wishes to proceed with my care in a week.

Otherwise, I haven’t been doing amazingly well thy-wise.  I’ve had a lot of pain from salivary gland swelling, tear duct scarring (actually, sometimes I cant get any tears to come out on my left eye which with this weather and wind hurts a lot!), the incision, from my lymph nodes (extending from my jaw down past my left breast), and some neck pain.  I have some pretty heavy duty pain meds for it, but I don’t really like them.  I need something that is both strong enough to kill the pain, but also non-narcotic so that I don’t feel like I’m sliding around everywhere.
I was also given some new medicine which made me violently sick– I spent many delirious hours vomiting bile and anti-nausea drugs.

In other news, I’ve been going to the gym lately- I’ve attended a Tae Bo course and a stomach-focused course.  Both of which I think are absolutely great!  Medically speaking, the Tae Bo course really didn’t mix very well with my heart, and I went “faint blind”, which for me manifests itself by complete blindness where all I see is bright white light.  I needed to sit down for a while, let my heart slow down a bit and my brain get more oxygen… and I actually continued with the course, albeit a bit modified.  The stomach class was great– medically speaking, though, there were a lot of exercises for which one had to hold one’s head up without any support– I lasted for about two repetitions, then my neck gave out.
I intend to continue with these classes though!  They are excellent for my body.

Scupdate to come later this week.

Merry snow-creature-making! (even if you’re not, you should!)  I’m going to make a snow thyroid (snowroid)!

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