Last week marked the one year since my surgery.It took surgeons over 7 hours to remove 43 lymph nodes (8 of which were malignant) and my thyroid. I took the time to reflect on the past year and all that has changed as a result of this diagnosis. The major differences for me are physical. During the surgery, the doctors damaged the nerves that operate my trapezious muscle. Post surgery, my right arm was completely immobile. Ok, maybe not completely…I could raise it about 6 inches from my side or about 40 degrees. But I’m a gymnast and cheerleading coach…that’s immobile!
The solution – Physical Therapy. So the awesome folks at Sport Rehab got the pleasure of seeing me 3 days a week for a couple of months, then twice a week for the next 6 months. Finally in September, my therapist decided that while I was still lacking some strength, all the mobility had returned and with the promise to keep it active, I was released. The next week, I did back handsprings at the gym with my team, video-taped it and showed it to my physical therapist! But, much to my dismay, within a month, the pain had returned. So I’ve resorted to massage therapy once a month. I have the unfortunate task of going every 4 weeks to a masseuse to have my shoulder and back worked on for 30 minutes. Right now, it seems this may be a new way of life, something I have to tolerate forever…darn. (I hope you read that with much sarcasm.)
But in my reflection, I noted several things I’ve learned to do differently. See, I’m left-handed…but only barely. I write, cook, and eat left-handed. That’s it. I was born missing muscles in my left hand so things like pouring, using scissors, or playing sports, I’ve always done right-handed. But not anymore. I couldn’t use my right arm for months so simple tasks like pouring a glass of milk or laundry detergent had to be done with my left hand. It’s now habit.
Then there are the physical reminders every day. Of course, the 8-inch, J-shaped scar is there, but honestly I can’t see it in the mirror without some effort, so I forget about it a lot. What I can see is my lop-sidedness. My right side droops. About 6 months after surgery, when all the swelling had finally subsided, I could see the gaping hole in my collar-bone area. The sunken spot where they removed all the tissue from my neck. And with the nerve damage, my right shoulder will never sit as high. I fight with tops almost every day trying to make them look like they’re not crooked, then give up, realizing I’M the one that’s crooked!
- My scar and a good view of my concave neck-line
- My droopy shoulder
Finally, the constant tension. I say tension instead of pain, because it’s really more annoying than painful. I have no surface sensation (I’m numb on the outside) from my ear down to my shoulder and a good portion of my head as well. Some days my nerves fire like crazy and it itches…but I scratch and I can’t feel anything…because I’m numb! Do you know how frustrating that is?? It’s very similar to the sensations a paraplegic has in their legs. Only people probably think I have a major case of dandruff because I find myself scratching my numb scalp…alot. And my shoulder/neck area is stiff and tight. Not so much in a muscular way, but the skin itself. The scar runs the full length of my neck and around to the front so I can constantly feel the incision.
Ok, I’ve really veered off-topic…the original reason for starting this post. First, a brief refresher on the functions of the thyroid. The thyroid is the only thing in our bodies that absorbs iodine. Hence the treatment using radio-active iodine pills. You swallow a pill that can only be absorbed by thyroid cells and the radiation kills the cancer. In order ensure complete absorption, you rid your body of iodine before-hand. Well, the annual check-ups work the same way. This time I will get a micro-dose of RAI with a dye of some sort in it. 48 hours later, they will perform a full body CT scan. If any iodine shows up, it has to be attached to thyroid cells, which of course I’m not supposed to have. So for 2 weeks prior to my RAI treatment, I have to deprive myself of iodine. The list of foods I CAN eat is very small. Basically, if it’s processed (comes in a package, can or box), it’s off-limits as well as no dairy, egg yolks, red dye #3, and a whole slough of other things. I tried to buy a whole chicken last night so I can make my own chicken broth. I saw the disclaimer “enhanced with natural juices” on the chicken so I decided I’d better read the label…sure enough it had sea salt (and I’m strictly forbidden to have anything from the sea, including sea salt) in this “enhancement.” Really??? Can you not buy a 100% chicken??? Fresh fruits, vegetables, and fresh – unenhanced – meats for the next 2.5 weeks. My saving grace – I can drink coffee, tea, and soda!
The other good news is that I don’t have to go off my thyroid replacement medicine! Thanks to a man-made hormone, they can artificially elevate my TSH levels necessary for the scan and RAI, hopefully negating any hypo-thyroid symptoms I would have otherwise incurred. Now, the other part of my year has been a constant state of hypo-thyroid. My TSH levels need to be <1…my last check-up in December showed they are still at >15! I’m still increasing my hormone replacement dose every 3 months, with the hopes we get it right soon! So my treatment week looks like this: Monday – 7:30 am hormone injection; Tuesday – 7:30 am hormone injection and appointment with my radiation oncologist; Wednesday – 2:30 pm RAI pill; Thursday – start clear liquids diet and laxative; Friday – 2:30 pm CT scan. I will make 3 trips back and forth to St. Louis (100 mi. one way), staying the night Sunday and Monday due to the early appointments, and driving round trip both Wednesday and Friday. I will be exhausted when it’s over and ready to have a whole year before I do it again!


