Hadn't been here for a while. I was planning to write a little, but reread last post and got a little choked up, so maybe later.
Happy Thanksgiving.

Ernie

The man in this photo is Ernie. He was a truly wonderful man whose time with us was cut short 2 weeks ago by lung cancer. He was not my father, nor my uncle by blood, but 22 years after I met him, it doesn't matter, he was family. He made me feel like part of the family from the time I first attended a birthday supper at his, and his wife Margaret's home 22 years ago. He was a surrogate father-in-law to me, much like a grandfather to my children (in the photo with him), and in many ways like a father to Todd. This weekend we along with his children and their families will pay tribute to him and his life. It will certainly be bittersweet. The memories will be sweet, but the sting of loss is still very fresh. If more people were just a little more like Ernie each day, the world would be a much better place.

Is it gone?

Are you ok now?, is it gone? are questions I'm frequently asked when people learn of my dealings with thyroid cancer. I sure wish I had a definitive answer for them, but I don't have an answer for me yet either.
I had another set of bloodwork recently. The Tg (thyroglobulin) inched up a little from the initial 2.5 post op level to 4.2. How significant is that? Wish I could say, but apparently significant enough that my endocrinologist wants me to get another ultrasound in the next couple weeks instead of waiting to see me in March as scheduled.
I guess the answers to those questions will remain unanswered for now.

Merry Christmas and Happy New Year!

Time does heal

Time does heal and it helps scars fade. This is 12 weeks out from second dissection. Not so bad now. The most obvious part is a segment where the new incision overlaps the old scar. Must say, I'm pretty happy with it so far considering how horrified I was with how it started out.

Looking up

When I last posted (more than 2 months ago), I was weepy and down. I hadn't revisited this blog until I received a message from another thyroid cancer patient who had read it. I had in part posted that and the preceding series of posts on my thyroid cancer journey in hopes that I might help someone else dealing with the same thing. Now I feel a bit guilty that I haven't come back with an update to let any of those readers know that things are looking up.
The sensitive area on my chest is pretty much gone. Just in the past few weeks, I've noticed that my voice seems to be back to normal most of the time. My energy level is seems to be back to normal. I'm back to being able to stay up like the night owl I'm used to being. The best thing so far is that my thyroglobulin level, test that is used as a marker for presence or recurrence of thyroid cancer, was down to 2.5 at just a month after surgery. That's lower than it's ever been. If it's same or lower when checked this month, I think I'll be in the clear for a while!
The only real downer at this point is that is that my shoulder doesn't seem to be recovering yet. I've been doing physcial therapy for 2 1/2 mo now to maintain range of motion and strengthen the surrounding muscles, but the trapezius doesn't seem to be working at all which means that the nerve still isn't firing. I know that nerves can be slow and next week will mark 3 mo since surgery, but it's still frustrating. I try not to compare, but I'm pretty sure I was seeing a little progress this far out the first time around. To end on a positive note, though my neck is till really stiff, I think my scar is finally starting to look better again. I don't really see the improvement when I look in the mirror, but I can see it in photos. I'll post a recent shot soon since the last one's I put up were pretty fresh.

On a different note, over Thanksgiving, I travelled with my family to Boston and New Hampshire to be with my brother-in-law, his wife, and little girl. We had a great time. And they were wonderful hosts and tour guides. I'm glad we finally made the trip. Just wish we had the means to do it more often.

Here's to a happy, hopeful, and peaceful Christmas season to you all (or to you both as the case may be)!

Humpty Dumpty

Some days I'm good at viewing my journey with thyroid cancer in a factual way, as a medical professional more that a patient. I can view what is happening to me more as a doctor sort of looking at myself, the patient, from the outside. Today was not one of those days. All those emotions that I'm pretty good at keeping put away, so that I can explain my condition without tears when asked, so that I can keep doing my job taking care of other's illnesses, so that I can be with my kids and try to keep up with them, they all spilled out this morning. I took my kids to school then came back home to finish getting ready for work and the tears started. They spilled for having to my hoarse voice and not knowing if it will come back, for my new bigger scar that so far doesn't look very nice, for my stiff neck and weak shoulder, and for the skin that feels raw in places that weren't even touched by a scalpel. They spilled for feeling like a year after I already did all this I'm back behind the starting line again. Just when I was feeling good and pretty much back to normal, I feel like I'm worse off than after the last surgery. I feel like Humpty Dumpty, the first go round most of the pieces fit back together, but this time it seems like a few more pieces are missing and maybe all the king's surgeons didn't quite get me back together again and I'm just not quite the same. (this isn't intended to be a criticism of them, just fact that things don't always turn out as well when they have to be repeated) Then I feel guilty because for all I've been thru and am crying about, so many have it so much worse than me. But that thought didn't stem the tears. They kept on coming while I drove to work and it took a while to stop them in the parking lot before I could go inside. Here they are again. Hate to think what my eyes will look like in the morning.

........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.