Wednesday, March 16, 2005

calm before the storm?

Two things of import today: first, I saw my ENT, and he was great. Second, I got my reports from the whole body scans (WBS) I had done after my RAI treatment. My ENT got them about the same time I did, since his office staff faxed them over to me when they arrived there. (Thanks, Pam -- you are a gem!)

The fax comes in, I'm reading it over, and get to the money graf:
Radioiodine accumulation in multiple lymph nodes in the neck and upper chest and possibly in residual thyroid tissue. There is no evidence of distant metastatic disease.
First reaction: yay! no distant metastases.

Second reaction: multiple lymph nodes?! No one ever said anything about lymph nodes before. My impression had been that all the uptake in the neck was from residual thyroid tissue. Hmmmm....

Around the time I'm thinking, "Hmmmm...." the phone rings; it's the ENT. He just read the scan report, too, and wants to know: Did I have a neck dissection? Was I scheduled for one?

Well, no. I reviewed the treatment/management plan with him and said I was OK with it. I am, for now -- because next week I'm having bloodwork done again. If my Tg is up again, I will not wait for May for a scan, etc. I will push for earlier treatment, I have pretty much decided.

Treatment, however, is almost certain to be a neck dissection, because lymph nodes are typically resistant to RAI.

I'm doing well not freaking out because there was some balancing good news. The large mass that was identified on my neck u/s following the TT is no longer there! The ENT told me that he would certainly have felt it in my skinny neck (he was much more diplomatic in how he put it), and since that large mass was assumed to be a bunch of swollen lymph nodes, that's a good thing, right? Oh, who knows? I sure don't.

I'll have more information next week, and maybe then I'll be freaking out. But I'm too tired to freak out about some uncertainty.

Other positive things about today: the ENT is obviously fantastic -- he called me. Personally. Not his nurse or assistant, either. That's very cool.
Info from the appointment:
1) He thinks my salivaries will settle down eventually, and that all the swelling under my jawline and in my throat is just a different variant of what's happening with the right parotid gland. I can live with that -- he didn't recommend any invasive procedures or anything else expensive, either. Very cool.
2) He examined my vocal chords (boy, is that a strange process!) and said it looks like there may have been some damage to the supralingual nerve so that the right side is a little wonky, but voice/speech therapy might help with that. He said whenever I want to start, he can give me references -- I told him I will wait to see if I need more treatment, first. (Next week is going to be very interesting.)

All in all it was a very positive experience, and I'm happy to have this guy be part of my medical team.

My endo, Dr M, called today, too, which is a miracle. The message was barely 3 hours old. She OK'd me dropping my Cytomel dosage from 20mcg down to 15mcg. Whew. I was really not feeling well on so much. I'm very interested to see if I have any TSH at all next week! I talked to Dr M about the ENT's concerns about the lymph nodes, but she seemed satisfied that we were handling it all properly.

So I'm not freaking out yet, but I've already warned DH that if I need a neck dissection I will do some crying. It is getting to the point where I'm getting a phobia about being cut -- too many surgeries and biopsies and whatnots. Too many stitches. Too many scars. Too many assaults on my body!

But if they can go in and clean me out one more time so I can be done with it, that would be worth it! Another concern I have, can we do this in such a way that I can still have my super fantastic summer on Cape Cod? I hope so. I don't think I want to wait until August, when we get home again, to deal with this.

What a day.

1 comment:

Papercollector said...

jo-- im pulling for you girl, i am also writing to oprah for you to get a make over... i hate that pic of you. :( sad eyes... you need a break from all of this. i have started up my blog again. ill see if i even get myself working .love you j