I have decided to keep my website updates going so that anyone who is facing treatment for Head & Neck cancer will have some idea of what treatment involves, and what life is like down the road after treatment. I know that reading about others experiences was really helpful to me as I began treatment, and I hope to help others in the same way.

Also, I am keeping it going for family and friends who I don't see often, that may be wondering how I am.

I am 18 months out from the end of my treatment. Once I get to the two year mark, the likelihood of recurrance greatly diminishes.

So at this point, lasting side effects are: damage to the sheath of my spinal cord that still bothers me(usually only when my body temperature rises), this will likely be permanent and is more annoying than anything else; my swallowing ability is slightly compromised; I still have decreased saliva, the dry mouth is annoying(requiring nightly flouride treatments), and I must be watched carefully for signs of dental decay; minor sore throat; and I am still anemic.
These side effects are all quite manageable.

I just had a check-up at Dana Farber, and everything looks good. Dr. Haddad calls me his superstar patient. I will continue to be monitored every two months, and will have an annual chest x-ray.

Those of you who know me well, know-----that it's ALWAYS SOMETHING!

While I may be a superstar in the tonsil cancer arena, not so much in the thyroidectomy arena.
My parathyroid glands did not recover from the surgery. A thyroidectomy is a pretty straightforward operation, and easily managed with a daily dose of synthroid. A rare complication of thyroidectomy is hypoPARAthyroidism.

It happens in less than 1% of thyroidectomies, and---you guessed it---it happened to me. The parathyroid glands are 4 pea-sized gland that sit next to the thyroid. They are very important; they regulate calcium in your body. Without calcium, you will die. There is no synthetic replacement for those of us suffering from hypoparathyroidism.
It was not readily apparant at first that I was suffering from this, and it went untreated . I have critically low blood levels of calcium and potassium. Calcium regulates your muscles and your nervous system. There is no cure for hypoparathyroidism, it can only be managed with round the clock dosing of calcium. But even as I am taking these calcium supplements, my body will NOT take up the calcium unless I also take a very expensive($$$$) prescription form of vitamin D once a day. I also must take a prescription form of potassium once a day.

Hypoparathyroidism is very rare and has Orphan Disease status(great...), and is a lifelong, tricky to manage illness. Symptoms include muscle weakness, trembling, numbness, cramping, and paralysis(tetany); difficulty thinking straight, seizure, laryngeal spasm(cutting off the airway), and heart failure.
Left untreated, it will cause death.

Once I got my diagnosis from my Primary Care doctor in late September, I tried to manage the disease myself, as I could not find an Endocrinologist on Cape Cod. My diagnosis was beyond the scope of my regular doctors, and they weren't comfortable treating it. Well, I am not a doctor and my condition became very unstable and I crashed several times. I finally seemed to stabilize my calcium, yet at the same time was becoming mysteriously sick.

I had bruises under my eyes in the morning, swelling of the face and extremities, and incessent thirst. No one could figure it out. I finally ended up in the ER with kidney stones on New Year's.

I was finally able to see an endocrinologist in late January. We discovered that I was over-dosing on the calcium and it was making me sick. I am not a doctor, and I did the best I could to treat myself, but was apparantly making myself sick. The high dose of calcium caused the kidney stones, and other problems I was having.

Cutting down my calcium dose solved some of my health problems, yet created new ones, as I am currently low on calcium again(hypocalcemic). I get my blood drawn weekly, then tweak my meds to see if I can become more stable.
I will be monitored for the rest of my life, taking meds 6 times a day just to be normal. My endocrinologist wants me on diuretics for the rest of my life to protect my kidneys from all the calcium I must take. While my disease is fatal if left untreated, the treatment carries it's own risks; largely kidney failure. Also cataracts and brain calcifications.
Some people end up on disability due to the illness.

My diagnosis of hypoparathyroidism came as a devastating blow. It has affected everything. I must pay attention to timing of my meds, and fluid intake. I go to the doctor a lot. It remains to be seen how active I can be. Physical exercise creates a demand in the muscles for calcium. I may not be able to go back to running, or long sessions at the gym. Mental and emotional stress also creates demand for calcium, so I must try to keep the stress level down.
I was REALLY sad to find out that my disease is considered permanent, I felt like everything had been taken away from me! Depressing....

After a few days of feeling sorry for myself, I decided that I would meet this challenge just like I have met all the other challenges that have been thrown at me. I will take this and roll with it.

Once I become stable, I will see how far I can go. Very few sufferers of hypoparathyroidism continue to be athletic; it is too taxing on the electrolyte balance and muscles. I have decided to be one of the few. Watch me.

So any of you who may have noticed that I 'dropped out' socially after my thyroidectomy, it was for good reason, and I apologize.

I would go to work, then spend my time from recovering from being at work. I was unable to do much else, the fatigue was crushing at times, and my thinking cloudy. Hopefully this will change once I stabilize.

Just for fun, here are some pics.

http://public.fotki.com/girlcat36/january-update-pics/