No Longer Textbook. Iodine Avoidance.

I'm overdue for another update. My thyroglobulin levels didn't drop significantly after the surgery, so there is definitely still thyroid cancer floating around my body. At this point, my case isn't "textbook" so it isn't entirely clear what the best course of action will be.

If you've been following along, the surgeon was just flat out wrong, as I suspected. As I understand it, the most likely way the recent tumor ended up where it did was because some cancer cells found their way into my bloodstream, took a ride and decided to homestead in the soft tissue my neck. This also means, since it is still around (as indicated by the thyroglobulin levels), it could be growing in other places.

I've scheduled a radioactive iodine scan for the end of the month to see if it can show presence of any additional cancer. My last scan didn't show anything meaning either the cancer isn't concentrated in any one place so it is difficult to see, the cancer cells aren't particularly hungry for iodine (rare but very possible) or they screwed up the last scan.

If this scan shows something, that is good news. It means the radioactive iodine is effective and can be used to treat the, and possibly even eradicate, the remaining cancer.

If this scan doesn't show anything then we don't learn much. It is debatable whether it is wise to treat with radioactive iodine, since it will likely be ineffective. More likely it means waiting to see whether additional growth of cancer makes itself known and deal with it as it comes. If it shows up in places were it doesn't do any harm or is easy to remove, it isn't a big deal. It grows slowly and is "well differentiated." If it shows up somewhere problematic and difficult to reach (e.g., lungs, brain or other critical organs), I could be in trouble.

To prep for this scan, in order to maximize the potential effectiveness, I'm on a low iodine diet (to ensure cancer cells are as hungry as they can be for iodine). This is surprisingly difficult since much salt is iodized (i.e., why Midwesterners no longer get goiters), anything made with salt I didn't add myself is off limits (no restaurant and few prepared or packaged foods). There are lots of other restrictions that make this extra tricky--no dairy, no sea products, no egg yolks, no soy & certain legumes, limited meat, limited grains. The Thyroid Cancer Survivors' Association has a good guide. I essentially have to cook all of my meals. At least, thanks to Thyrogen, I don't have to go off my meds so I'll actually have the energy to cook.

I'm travelling for five days to Portland, OR which is going to be the biggest challenge, especially since one feature of the festival/conference I am attending is a "best of" roundup of Portland's famous food carts. I made myself a big batch of beef jerky and found some salt-free granola and freeze dried fruits to pack. I plan to buy myself some fresh foods (bananas, carrots, etc) while I'm there, and Vinh says Ned Ludd will suffer my insane restrictions and make me a meal. Also, I am allowed to drink beer and coffee. Thank goodness.