Sunday, March 04, 2007

Thyroid Cancer - Waiting for Radioactive Iodine (RAI)

While waiting for the next step in my thyroid cancer treatment one of my teeth developed an abscess. It was the only tooth that had a root canal in it. Apparently the bacteria left in the tooth had decided to flare up into an infection. It was really no wonder that this occurred now. I had been under a large amount of stress with having given birth by C-section in November, nuclear med scan in January and partial thyroidectomy in February. On top of all this I was caring for a new baby which in itself is tiring.

I was given a low dose antibiotic to try to knock the infection out. It would not subside. My dentist called a doctor friend of his who was an infectious disease specialist. He told him to prescribe 850 mgs of Augmentin. I was on this dose for over 2 weeks. It reduced the infection enough so that on March 27, the endodontist could re-do my root canal in the tooth. I was told that this infection needed to be cleared up before I could undergo any further treatment for thyroid cancer.

Days later brought more news of what was to be my next medical adventure. My ENT had done some investigating and determined that I needed to meet with a radiologist.

On March 29, 2000 I met with the radiologist at the hospital. He reviewed my medical records and interviewed me about what procedures had been performed. It was at this point that he informed me that I would have to have a radioactive iodine (RAI) treatment but that this could not be performed until I had a total thyroidectomy. This would be my 3rd surgery in 5 mos time. I was wondering how I was going to handle all of this. I was so tired from just being a mom and then adding all the tests and doctors appointments it did not seem fair. It was during this appointment that I would first hear a line I would come to hate. The radiologist told me that I should not worry because I had “the good cancer”. He went on to tell me that if there was a cancer to get then this one was it because it was easily treated & cured. For me this was not the case and I would continue to suffer for close to 6 years after this from this "good cancer".

Life was moving fast and I was growing more uneasy. No one seemed to have answers for me and my doctor’s office became more and more hostile to my inquiries. I am sure they just wanted me to do what they said and not ask questions. I would soon find out that they did not know what they were doing. The truth was soon to be revealed to me but not after the first major mistake was made. I had found two e-mail groups and joined them. One was on iVillage.com and the other was the ThyCa.org group. Being a member of both began my education into what thyroid cancer was and the standard protocol for treatment. My care was quickly deviating from the norm.

On April 12, 2000 I returned to the hospital to have the remaining quarter of my thyroid removed. I was nervous about returning once again after the nightmare I had with the IV. I made sure that I made them aware of the previous situation and they got a nurse who was skilled in difficult insertions to assist me. I was relieved when it was in on the first try. The surgery itself was over quickly without any issues. I returned home the next day to recover. When I got home I had to change my dressing on my neck. I slowly peeled off the bandage and saw my war wound. I looked like the bride of Frankenstein. There were big black spider-like stitches across an inch and a half to two inch incision. I wondered if I would look normal again. It was so ugly.

After returning home I began to wonder how I was going to deal with all that was to come. I had been placed on an antibiotic not suitable for nursing so I was forced to face the reality that I had to stop. With radioactive iodine looming over me just 6 weeks away I gave up. I was depressed and angry. This is not how I wanted it to be with my son. I wanted to enjoy him and instead I was going from doctor’s appointments to labs to hospitals to take care of myself and this "good" cancer. I hated the first time I tried to give my son formula. He did not like it and spit it out. I cried as I tried to feed it to him feeling like I was poisoning him by not feeding him God’s perfect food. I felt so guilty. Then he broke out in a rash all over his face so I figured it had to be the formula. I had more guilt. I tried soy and he absolutely hated it. So I tried the regular formula again combined with breast milk I had frozen and eventually he was hungry enough and took it without issue.

It was the middle of April and I was in the waiting game. I had my thyroid removed and was on no thyroid hormone in preparation for radioactive iodine (RAI) treatment. I was told very little about what this entailed. My ENT did not know how to treat thyroid cancer and was depending completely on the guidance of the radiologist at the hospital. I was told that I had to wait until my TSH reached a high enough level so that I could be treated with RAI. How long I was to wait was not clear. As time wore on I was more and more fatigued. I was trying to care for a baby who was now almost 6 months old. I looked forward to the naptime because I would sleep. It gave me 3 hours during the day that I could finally get some rest.

One morning I woke up around 8 am to the sound of my son waking up. I pushed back the covers and began to sit up. I felt so dizzy. I waited a bit and then tried to stand up. I couldn’t. I almost passed out and had absolutely no balance! Thankfully the phone was near the bed. I called my husband and told that he had to come home because I was scared to try to pick up the baby in my current state. My ENT would later diagnose me with a calcium deposit in my ear canal and gave me exercises to do to dislodge it. How insane!!! The problem was that I was severely hypothyroid.

Thinking back I realize the insanity of the entire scenario. On May 9, 2000 I had reached the end of my rope. I was so tired I could hardly stay awake. I literally fell asleep on the couch after supper and moved from the couch to the bed and proceeded to sleep until 8 am when my son would awaken. I was so achy and feeling frantic. I called my doctor’s office and told them that I couldn’t take it anymore and that I had to have a high enough TSH. I was told the target was 80. The doctors office called in orders to have my TSH checked with a blood test. I went to the lab and had the blood drawn the next day. The results came back at a level of 102.78!!! Then the mad scramble began to get another appointment with the radiologist to begin the RAI therapy.