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.

Pre-diagnosis thru treatment and on...

It all started with a lump on the right side of my neck last June. As background, I'm a pediatrician, in practice for 16 years at that time, healthy, and aside from pregnancy related days, had missed only 2 unscheduled days of work in 13 1/2 years. When I noticed the lump, I guess I knew it was significant, or I probably wouldn't have called Billy G., an ENT colleague. I almost dismissed it because it had benign qualities, but I thought maybe I'd felt it the month prior and and that it hadn't been that big. When Billy felt it, he thought the location was odd and ordered an MRI. That did show an abnormal node which led to the open biopsy I had July 2009. Several possibilities had been voiced, but the result presented to me at my follow up visit wasn't one of them, Papillary Thyroid Cancer. Something in the way Dr. King spoke to me post op, even though I was not fully recovered from anesthesia, raised a red flag to me that he was concerned about something. Friend's told me I was silly, but it turned out I was right. Being a doctor still didn't prepare me for the news. He handed me the path report as he started to talk to me. I heard "thyroid cancer blah blah blah, thyroidectomy blah blah blah, neck dissection blah blah blah". I tried to ask some intelligent questions and thought I was okay, but leaving his office, the last patient of the day, on my birthday, I began to bawl as I hit the hallway. That would have been tough enough, but the results were just preliminary, the slides had been sent to PA for confirmation. It was more than a week before I got the confirmation, and that was a really loooong week. From there, a visit to an endocrinologist to get plugged in for care after surgery, CXR, neck U/S, bloodwork.
To give myself a little time for recovery between the biopsy and the pending total thyroidectomy (TT) and right neck dissection, I put the surgery off until end second half of Oct. You might wonder why wait so long, but this cancer isn't presented as being anything urgent. It is slow growing and has a low mortality, it's the "good cancer" is what I heard, but 3 operations later it doesn't seem so good to me. To be continued............

My thyroid cancer journey, so far......

It was back to the drawing board last week so to speak with another surgery for thyroid cancer (thyca). The last year has been a big blur from finding the lump, to biopsy surgery, then the shock of the diagnosis and the further shock of what type of surgery would be required. The time for that to sink in, surgery and recovery, then discovery of more nodes and resigning to the fact of more surgery.
Friends and family have been so supportive throughout this saga. I'm sure sometimes I don't express my appreciation enough, often because I get choked up so easily when I start talking about the good things people do for me. It amazes me how fast that kind of emotion can jump up my throat and choke off my words while the tears start to flow so I can't talk without bawling. Blogging (though infrequently) and interacting with others with thyca on the Thyroid Cancer Awareness page on FB have been great outlets. I can keep on typing while the tears flow.
I've experienced so much as a patient these last 15 months. I hope I can use some of it as a positive in my practice or at the very least in understanding why patients act the way they do sometimes. It has really been an emotional rollercoaster,and I know I've gotten very wrapped up in those emotions at times, so it's hard to step back and find those positive spots in all this. I think that's part of what this does for me. I'd be lying if I didn't admit that this is also an escape for me from those emotions. As I think thru it and type it, I'm often not feeling it. Same thing when I talk about it in a factual, probably almost journalistic way, when friends ask about it. As long as I stick to the facts and just relay the info I'm ok, but start talking about how I feel about it and I'm thru.

the first photo is after my initial excisional biopsy, July 2009 and the next photo is how well it had healed by October, before the big surgery.

8. the third is after the thyroidectomy with neck dissection, Oct 2009 followed by one showing, fortunately, how well I healed (a point both consulted surgeons pointed out, which I found curious since either of them would potentially be undoing that soon) before having to start all over again with the most recent neck dissection, same side. I hope I'll be as blessed to heal nearly that well this time around. You can be sure I'll show you down the road.
   

It's late and I think I've wandered off course, but I will be back to this, hopefully sooner than later, to talk more about the steps along the way. Hopefully I can help someone else that is starting down the same road while helping myself, and without making my friends listen to me repeat myself :)