Friday, May 19, 2006

bleh

Yesterday ended up being a yucky day. Today's not looking any better, but at least I can eat real food tonight.

I hope I'm over the hump.

5 comments:

Anonymous said...

i hope your weekend brings a couple of better days. we are thinking of you often and sending good vibes for your continued recovery.

Molly Jane said...

Saturday can't be a bad day, right? Right! Sending you peaceful vibes.

SafeTinspector said...

So was the real food as yummy as you'd hoped? Did the yummy balance out the earlier yucky?

Barb said...

Cin led me to your blog, because she knows I too have had thyroid cancer and she thought I might want to pay you a visit. Yep, sure do! We double-smilers have to stick together, after all huh? :)

In 1984, when I was in my late 30's, I was standing in front of the mirror putting mascara on, getting ready to go to work. With my chin lifted to apply the mascara, I swallowed and happened to notice a lump go up and down on my neck. Weird. What was that? I thought. I swallowed again. It did it again. Uh oh. This is something new.

I saw the doctor soon after that, and he said that my thyroid gland was enlarged, but not to worry, that although it could be cancer, that thyroid cancer was very rare and I was probably fine. He gave me a Rx for synthroid which he said would probably slow the growth and we would watch it.

A year later, with an even larger thyroid mass, I was sent to a specialist. Fine needle aspiration showed no cancer, but because the mass was continuing to grow it was decided to remove half of my thyroid gland. Follicular thyroid cancer was the pathology.

A number of days (weeks? it's hard to remember now) I was admitted to the hospital (an isolated room) and given a large dose of I-131 to kill off the remaining thyroid tissue. I now know, that there should have been a second surgery first to remove more tissue before the big dose.

I was told that thyroid cancer is no big deal, and if you have to get ca, that other than skin cancer, this is the best type to have, because all they have to do is give you the I-131 and it's gone.

Obviously these fools didn't know what the heck they were doing, because for the next 10 years, all that was done was a TSH check once a year and reduction of my synthroid dosage.

In the mid 90's I relocated to a different area and had to find all new doctors. Amen! Finally someone who knew what they were doing. I found out I was supposed to be having whole body scans every 2-3 years. I hadn't had even ONE! So I had a scan. It showed regrowth of tissue. I was again admitted to the hospital, in the lead lined isolated room at the end of the hall, and given another big does of I-131. The follow up scan showed all the tissue was now gone.

Two years later, a whole body scan showed no regrowth. 6 months after that a CT scan showed regrowth or residual tissue, but I wasn't given that information from the doctor who did the scan. He was doing the scan for something else, and evidently didn't see the importance of sharing this other information with me. It wasn't until 3 years later when I requested a copy of that scan that I discovered it showed the thyroid tissue. (I now request copies of every scan or MRI that I have)

2001: Another new doctor and another whole body scan showing a cloudy area. Thyroglobulin 8.9 unsuppressed. What's going on now? Good grief!! A CT scan w/contrast was negative. 2 months later thyroglobulin 2.0 suppressed. My endo said let's wait and watch.

2002 & 2003: Negative ultrasounds and blood work results ok.

end of 2005: Ultrasound showed regrowth or scar tissue. Had my first thyrogen whole body scan. Low iodine diet for 4 weeks!!!! Always before, I had been weaned from my synthroid before a scan, and the fatigue was horrible. But this diet for 4 weeks was unacceptable. I'm not sure I would opt to do that again.

Whole body scan done the end of January 2006. My endo didn't see anything to be alarmed about and will continue to monitor me yearly. My thyroglobulin continues to show tissue somewhere, and I assume it's what is in the thyroid bed.

I've come to the conclusion that this may be the "second-best" type of cancer to have, but you have it forever. You are never not a thyroid cancer patient. There is no 5-years-no-return-your-cured. It can always come back. And we have to educated ourselves and take an active part in our care.

I tell you that not to discourage you, or scare you, but to encourage you. I see from your writing that you want information about this cancer, so I can see that you already are in the process of learning all you can. I would refer you to http://www.thyca.org/ if you haven't found it already.

I wish you health and speed in your recovery. I'm so glad to see that you already know about the higher chance of osteoporosis. No one told me about that. I learned it on my own many years after my surgery. I'm 59 now and have about 25% bone loss in my hip. My endo says it's the synthroid that does it. So take your calcium and exercise. It will make a huge difference for you later on.

I wish you many blessings. Be strong. And good luck with being involved in getting info out there and starting a support group. We need all the people like you that we can find.

Anonymous said...

Yep, you guessed it. More *HUGS*!!!