........continued

......So, I had my total thyroidectomy (TT) along with modified right neck dissection. Basically, along with removing the thyroid gland, the surgeon goes thru the compartments around the thyroid bed, trachea, under and around the sternocleidomastoid (scm) muscle and to some extent, back toward the trapezius muscle systematically removing all the lymph nodes he/she can find. This all took about 6 hours, making for a mighty sore throat after surgery. Several of the forty-some nodes removed were positive, but the primary tumor itself that got all this started, was only 4.5 mm in diameter. Problem was it's location, right against the capsule of the gland, so it spread thru. I experienced a couple of common side effects from this type of surgery, temporary low calcium levels because the parathyroid glands which are on the thyroid can, and did, go into shock after being manipulated off the gland. That required a lot of calcium levels (and thus blood draws), some calcium infusions, and lots of calcium supplements with vitamin D for a while. Fortunately, mine recovered, many folks aren't that lucky. The other issue that was a bit more trying, a stiff neck and weak shoulder from muscles cut and reattached, and stretching of the nerve that goes to the trapezius muscle, the spinal accessory nerve (san). Some trauma to this nerve is unavoidable, but the recovery is variable. Physical therapy did wonders. I got pretty much normal range of motion back in my neck, I avoided a frozen shoulder which I've read many people have a problem with, and though not back to 100% it was functional for most activities up until the more recent surgery, but we'll get to that later.
Immediately after surgery I was started on thyroid replacement hormone which I, like all people with no thyroid or nor functioning thyroid, will require for the rest of my life. I have also been fortunate in this area in that the dose I started on has only had to be adjusted only once, and then, only slightly. Monitoring for the right dose requires periodic blood work as does monitoring for thyroid cancer. TSH and T4 help determine the proper dose of hormone, and a Thyroglobulin (Tg), which is produced only by the thyroid gland and thyroid cancer cells, is one of the tools use to watch for recurrence of disease or increasing amounts of cancer (though only helpful if you don't have antibodies to it so these are also tested for each time). Ideally the Tg would be zero if you've had a TT and all your cancer is gone.
Another part of the treatment for many of us with this is RAI. This is the treatment with radioactive iodide in a dose that will hopefully kill off any residual thyroid cancer cells which couldn't be removed surgically. For me, logistics were the most difficult part of this treatment. Prior to receiving this treatment, which is in the form of a pill, you must have a high TSH which normally would mean you are very hypothyroid. For some this means being off their hormone which is the equivalent to being miserable, but now, another option is a series of 2 injections of thyrogen which drives your TSH up quickly without making you feel like it. After taking the dose you must go into a type of quarantine because you are emitting the radiation that you ingested. The length of time you must be secluded depends on the dose, but it's usually at least a few days. My kids are old enough to understand this, and my room is situated such that I was able to do this at home, but a lot of folks with small children have to stay in the hospital or make other arrangements to be away from home altogether until they can safely be close to their kids again. The side effects are variable. I had some mouth and tongue irritation on and off for a couple months, but nothing terrible. I forgot to mention, the part that was almost worse, or at least more difficult that all the other issues, was the low iodide diet you have to be on for about 2 weeks prior to the treatment. I won't give details, you can look it up if you are interested, but suffice it to say, it was a bit of a pain.
That treatment was done about 6 weeks after surgery, so by the end of 2009 I was on cruise control for a few months. That's where I'll end this installment. More later for anyone interested.