Thyroid Cancer - 3 1/2 mo Post RAI Follow Up - Looking for a New Doc Again!

On August 22, 2005 I went to have my blood drawn for my follow up visit with my endocrinologist. My appointment with him was on August 31, 2005. This was over 3 ½ mos after the administration of 250 mCi’s of Radioactive Iodine. I am not sure what the medical community would think about this but I think this is horrible. I would ask him about this at my appointment.

I arrived at the office on August 31 for my follow up. They weighed me 168 lbs with a BP of 116/78 and a pulse of 104. My TSH was .16, FT4 1.1 and Tg 8 with no antibodies. He told me I was doing well. I told him I didn’t feel well. I asked him why I had not been able to talk to him before the ablation when I called. He gave some excuse about the nurses handling things. I asked why it was over 3 mos before I got to see him after the ablation. He told me he was busy. WHAT?? I pushed further. He told me that there were people that were scheduling 5 mos out and he had to balance them all. I asked why he didn’t close his practice to new patients if he couldn’t handle the ones he had already. He told me “They need me”. OH MY GOODNESS!!! I must be chopped liver because I think I needed him a few times when I wanted answers or help to feel better and he brushed me off on his nurse. He finally got frustrated when I asked for copies of the entire treatment and told me that I should probably go see someone else. I said nothing, got my copies, paid and left. Again I returned to my car and cried. This is not health care I was experiencing. There was no “care” here. I would go for labs, they would run them, take my weight, blood pressure, feel my neck and if I was in their “range” send me on my way after paying a $15 co-pay. It didn’t matter how I felt or what symptoms I had. My range was good so therefore there is no issue.

I took my daughter into see her pediatrician the same week. The Dr asked me how I was doing. He had been with me through the entire process since I was diagnosed 4 mos after my son was born. I gave him my story and he told me I was getting horrible care. His scheduler helped me get an appointment with an endocrinologist at the University of Michigan for September. I was excited and hopeful that this doctor would have some answers as to why my thyroglobulin continued to rise after so many ablations.

In anticipation of my trip to the University of Michigan I began to visit all the hospitals that had done scans and ablation therapies. There were 3 in all. I checked out the films from all the radiology departments and made copies of the documents in the files. It was at this point that I found documents that had been omitted from the information given to me by my ENT. I am assuming that he had copies because many were communication from his office to the radiologist

Thyroid Cancer - The Days Following RAI

For the next day I just relaxed, watched movies and rested. My children would yell to me through the door from the hallway and I would talk to them that way. My husband and I would talk on our cell phones. Thank goodness for the “in network” feature so we did not use our minutes. It was weird doing this just two floors away.

On Wednesday, May 25 I wrote the following to my ND.

Hi Doc -

Just wanted to check in with you to let you know how I am doing. I did relatively well the first day but when I hit the 24 hour marker yesterday after the administration of the RAI I started to feel pretty bad. I know the first 48 hours can be the worst but didn't anticipate it would take 1 day to kick in. My body temperature runs from hot to cold all day long. I have been vomiting off and on since yesterday 6 pm. I just took some toast with butter and it has stayed down. Water isn't sitting well but Apple Juice does so I am drinking that to try to stay hydrated. I am not sure if brown rice water would help in this situation since it isn't the flu. My suspicion is that it is just the toxins coming out through my saliva and entering my stomach. It seems to be worse after I have slept for a few hours so I am wondering if it just pools in my stomach during those hours. I am sleeping all but about 8 hours per day so my naps are 2-3 hrs at a time. I am exhausted! So I just keep sleeping knowing my body will take what it needs.

The good news is that I still have my taste buds intact, saliva glands are not too sore nor is my neck. Traumeel seems to help that. I continue to massage them all as we discussed. I am fighting constipation since the RAI - suggestions other than oatmeal ??? Anything else to consider? Other than that I think I just need to continue to tough it out.

This was his response. It brought tears to my eyes as I read it. How vastly different my two doctors were. One would not talk to me and had just given me a toxic dose of a radioactive pharmaceutical drug and the other thinks of me and prays for me while he is traveling to a conference. I felt blessed.

Stephanie,

Thanks for the update. You've been in my thoughts and prayers as you went through your ablation on Monday.

Brown rice water will be really helpful for you at this point for soothing your stomach. Also, for nausea, try grating an apple into a bowl. When the pieces start to brown, eat it. It's very calming. Soaking prunes overnight in water and drinking the water is yet another idea to help you cope with this set of symptoms.

I'm out of town at a conference until Tuesday, so we'll touch base again when I return.

Doc

Looking back now it still feels so vivid in my mind. I can feel how it felt to me both emotionally and physically even though it is 1 ½ years ago. I truly believe that if it weren’t for the support and skill of this doctor I would have been in some serious trouble physically. He worked very hard to help be gain my strength back. His encouragement was worth its weight in gold as well. I thank God for bringing him into my life.

The second day was the beginning of the worst for me. I woke up at around 3 am and began to vomit. I did this every few hours for 3 days. It was awful. As I mentioned in my letter to my Dr, it seemed to get worse when I slept and then woke up. My body ached like the worst flu I have ever had. I was freezing cold so I piled on the blankets and wore sweats and then I was burning up and taking things off. On the second night my husband went for a walk and brought back a bunch of lilac flowers for my room. They smelled so good.

After 3 days of isolation my daughter was really starting to miss me. I had my mom bring her to the top of the stairs. I told her to run to me quickly and give me a hug. She did that and then I remember telling her to “run, run run” back to grandma. It made me sad. My poor little girl was almost 3 years old (on 6/4) and she had to deal with the hard things in life already.

By Friday, May 27th I was getting stir crazy. The nausea had subsided so I decided to go to the local grocery store. It felt good to get outside and just get out. I wandered around for a bit but tired easily and returned home shortly after to take a nap. I was amazed at how hard this hit me. But then again I had received the equivalent of my first two ablations in one dose.

On June 1 I e-mailed my ND again to ask more questions.

Just curious if you would understand why after 9 days the back sides of my tongue now feel like they are burned and I have some pain. I would have thought that this side effect would have come sooner in the process. I have not eaten anything hot that would have done this so I am assuming it is due to the radiation. My tongue is also sore when I move it around (underneath) as is my throat - just a little. Suggestions?

Stephanie,

I don't know why these symptoms would show up 9 days later. But I do know how you can deal with it. Mix 1/2 Echinacea and 1/2 water and swish it in your mouth for a couple minutes. Do this twice a day. It will have a great healing effect. (You can swallow it too).

Doc

Thank goodness for home remedies! I did not want more drugs or other toxic substances so I steered clear of contacting my Endocrinologist.

Within a few days I would develop another issue. The inside membranes of my nasal passage became sore and dry. I had huge sores on the inner part of the end of my nose. I put vasoline on the inside to try to keep it "moist" and try to get it to heal. It was very painful to the touch. The air passing through my nose would irritate it. How awful this RAI is to my body.

Thyroid Cancer - RAI #3 and a New Job

The weekend dragged by as I anticipated the ablation on Monday. It was my mother’s birthday. This would prove to be the second bad birthday for her. My grandfather had died on this day the year before. I felt bad. I had begun to prepare my children for this time as well. I told them that “Mommy had to take some yucky medicine that was not good for them but was good for me. Because this medicine was not good for them and being by me would allow them to get it they could not be by me for 10 days.” It broke my heart to see my little girl look at me not quite understanding why she couldn’t see me. I had gone to the dollar store earlier that week and picked up 10 gifts for each child. I wrapped each one and placed them in boxes. I told them that each day grandma would let them choose a gift and they could open it. Then they could use the gifts to count how many days there were left before they could be with mommy again. It would give them something positive to look forward to as well.

I was thankful that my mom would be able to spend the week with them while I was in isolation. It was one thing I did not have to worry about this time. My both of my children would be with someone they loved and knew. Their schedules would be the same and they would not be shipped off to someone else’s house. This was the first time for my daughter and the third time for my son but the first he would remember. My husband still did not have a job at this point so he had to keep searching and interviewing. He did have a very good prospect on the table but we were in the waiting game.

Monday, May 23rd arrived all too quickly. I remember getting into my car and placing the healing scriptures cassette in to listen to while I drove to the hospital. My favorite scripture had become Mark 16:18 – They shall take up serpents; and if they drink any deadly thing it shall not hurt them; they shall lay hands on the sick, and they shall recover. Tears rolled down my face as I claimed this scripture for my own. I knew that God was with me through this and that he had promised never to leave or forsake me. The drive to the hospital is a blur. I remember parking the car in the same ramp I had been in the day before. This time I walked through the hospital knowing where I was headed. It was my third visit to the Nuclear Medicine Department.

I arrived once again to the patient waiting area and checked in. They tagged me again with the typical hospital wristband and I was told to sit down and wait. My wait this time was longer. I had visions of the technicians drawing straws to see who would administer the RAI to me. As I sat in the chair once again staring at the events of the day on TV, I thought about how lonely this whole journey is. No one could be with me due to the exposure. No matter how much your husband and other family members love you they can never understand what it feels like to go through this over and over again. The journey into extreme hypo until your brain fogs, body aches and you just cannot function anymore is something I never would have imagined. Your body literally shuts down. The 10 days alone would be welcome to me in a way. No one would demand a thing of me. It was my time to just recover and lick my wounds once again.

No one sat with me as I waited. I just wanted it all to be over, but would it ever be over? I knew that I would never do this again. I would hit my maximum lifetime dose of 500 mCi’s of I-131. Further treatments would risk acute myeloid leukemia. This was it. But I couldn’t think of the “what ifs”. I just had to make it through today. I began to watch the people being wheeled by the windows again. I prayed for the people being treated and for myself. It was such an empty and lonely feeling. I wished someone could take it all away. I was alone and once again it was just me to fight this battle. I had to deal with this. I had to find the strength somehow to fight once again. I was tired both mentally and physically.

About 20 minutes after I arrived, a technician came to take me back to the room where I would ingest the toxic Iodine. I put a smile on my face as I always do and followed her to a room with 2 chairs and a table. On the table was a cup of water and a release form with a pen on top. It was another cold, sterile room. I was instructed to sit in one of the chairs so I did. The technician explained that she would be right back while I read the form. She showed me where to sign when I had finished.

While she was gone I read the standard blah, blah, blah of medical legal forms. I placed my signature on the bottom and waited. The technician had used the rolling chair to get the RAI just like the last time I was administered the ablation. She returned with a large cylinder again. It was about 2 feet long and 6 inches in diameter. She could not pick it up but set it upright and unscrewed the top. Inside was a prescription bottle with 4 capsules. She handed me the container and instructed me to open it and take the pills and drink all the water. I looked at the pill bottle to verify that it was for me and the correct dose. I took the pills and swallowed. She handed me the precaution sheet and told me to call the number on it if there was any problem. I asked her how she could administer the dose of this level and not be affected. She said that she had to go through some testing the next day to determine her exposure. How scary is that? I did not ask what she had to do. I just wanted to leave and start the process. I said good-bye and began my walk through the halls. I remember thinking that I was passing by all these people that had no idea that I had ingested a large dose of radioactive material. I quickly walked toward the elevators and pushed the button. As I was standing there I a couple came up to the elevators. The woman was pregnant! I decided to pretend that I had forgotten something and left the area. I did not want to be on the same elevator with her. I did not want to expose her or her baby to this horrible drug.

I returned to the area in front of the elevators when they got on and the door closed. I pushed the button again and when it arrived I stepped in. Finding the close button I pushed it to ensure that no one else had the opportunity to join me on my journey. After leaving the elevator I walked quickly to my car. As I sat down I felt the comfort of its confinement. It was familiar and felt safe. I drove out of the parking ramp and handed my validated ticket to the attendant. I couldn’t help thinking that this many had no idea what I had just gone through or what I as about to encounter but then neither did I.

I started home and on the way decided to stop at the local video store. I had brought my laptop upstairs to the bedroom where I would live for the next 10 days. I could watch DVD’s on it. I ran in to the store quickly, careful to keep my distance from others. I selected 3 DVD’s and paid for them. I left the store and started home. When I was approximately 1 mile from home I called home to tell my mother to get my daughter and take her downstairs. I did not want her to great me at the door when I was at my highest level of radioactivity.

I pulled into the garage and gathered up my videos. I stepped into the house and grabbed some water. I would begin to drink water to flush the toxin out of my body. I would have to follow the low iodine diet for another day and could start my Synthroid in 3 days. Oh how I waited for that day! I was like a junkie looking for a fix at this point. I headed upstairs to the bedroom. It was equipped with a TV and full bath. My meals would be brought to me for the next 5 days.

I did not feel bad at this point so I turned on the TV and lay on the bed. I grabbed my laptop and began posting to my friends on the e-mail groups I belong to. I told them that I had returned home and so far was doing OK. Many sent words of encouragement. I couldn’t help thinking of how much harder this would be if I couldn’t somehow connect to others like I was doing on the computer.

At 3:30 I received an e-mail from my husband. The subject was “Does this ease your tension at all???” I opened it to find that he had been offered a job to start on June 1. This was the exact day that our COBRA would be ending so we would not have to pay another $960. They offered to start his insurance on the day he was hired. What a blessing. God once again provided for our needs and I could relax and recover without worrying.

Thyroid Cancer - The Whole Body Scan 3 Days Before Ablation

My Naturopath worked with me to build up my body prior to the RAI treatment. At one point I was taking 54 vitamins per day. I felt pretty well all things considering. Then I hit a brick wall and called my doctor asking if we could test my levels early. It was only 4 weeks after going off my medication but he agreed. The levels came back and my TSH was 80.73. I went hypo very quickly! This was May 12th, 2005. I would not speak to my doctor through this entire process. After they got the test results the doctor’s office scheduled the RAI scan and ablation and called me with the dates. The scan was set for May 19th and the ablation for May 23rd.

I had researched for 5 years by this point and was beginning to be a doctor’s worst nightmare. I questioned everything! I had an unsettled feeling about this. My biggest objection was over the TSH level. My TSH had risen from suppressed in August of the previous year to .92. When the TSH is suppressed the thyroglobulin levels are lower. I would later ask the nurse about this and be told that the correlation between TSH & Tg is non-existent. I wanted to get my TSH suppressed and then run the Tg but my doctor would not let me do it. He just kept scaring me with the spreading cancer concept.

I went for my scan on May 18th. It was the third hospital I would go to for this procedure. Each doctor had their favorite. There are only 4 hospitals in my city. This hospital is the largest one in my city and the hardest to find things in. I parked in the ramp across the street and walked across the cross walk. I remember thinking that this should not faze me because I had done this on 2 other occasions but it did.

I checked in at the desk in the nuclear medicine department and sat down to wait for the technician to come and take me back. A national news channel played in the waiting area. I stared at the screen while my mind ran wild. The room was surrounded by windows so I watched as patients were wheeled by. Because this is nuclear medicine, it is the hot spot for cancer patients. The people I saw were obviously enduring massive amounts of toxic chemical treatments with radiation poisoning. They were pale in color and frail looking. I shook inside knowing that in a few days I would experience the poison again for myself and my stomach had a sick feeling.

I waited about 15 minutes and then the technician took me back. She checked the tag on my wrist to make sure I was who she thought I was and then proceeded to push a chair outside the room and down the hall. She returned moments later with a large metal cylinder which contained the scanning dose of I-123 that I was to ingest for the next days scan. I took the pill and left. I would return in 24 hours.

The next day I returned and checked into the Nuclear Med department again. I made small talk with the people around me. One person finally asked why I was there. I told her that it was for a scan to determine the dose of radioactive iodine I would receive. She asked for my doctor’s name and I told her. She said that she had the same doctor and found him to be egotistical and did not listen to her. Great, this is just what you want to hear as you are approaching an ablation dose. I was called soon after and taken back to the scanning room.

The technician led me down the hall and as we walked she started to explain what would happen. I stopped her and told her I knew the drill. This was the fifth full body scan since being diagnosed. I was instructed to lay down on the flat cold metal and plastic table. It is narrow in width – maybe two feet wide. There is a pillow for my head. This hospital was one of the most “patient friendly” I had experienced. The scan takes ½ hour and is in a cool room because of the machines. She offered to get some warm blankets for me. I eagerly accepted. She put a relaxation CD on and dimmed the lights. I was told to lay flat and not move. While the machine was over my head & neck I should not swallow if possible. That’s like telling someone to try to not think of a bear. All you do is think of a bear. But again I knew this was what was expected so I was prepared. I spent my time thinking and praying to God for his protection on my body from the radiation. I prayed that the scan would somehow be negative and that the treatment would be called off because I had been healed. I asked to see the image on the screen and she showed me what had happened. There was nothing that "lit" up - not anywhere. I thought "OH good!!! There isn't anything to ablate". My doctor would not think this way though. I was taken to another room to do the "Uptake measurement". This tells them how much of the RAI your body took in. They place a measurement device on your knee becuase this is a good baseline reference. Then they put the machine at your neck. My uptake was only .3%. This is VERY low and signified that I was what they call "Iodine Resistant". Then the scan was over and I was free to go home for a few days. I would await the call from my doctor’s office to tell me what dose had been chosen.

My scan had been done on Thursday and on Friday the 20th I received a call from my endocrinologist’s office to let me know that we were all set for Monday’s ablation. I asked the nurse what dose my Dr had chosen to give me. She said 250 mCi’s. I asked why. She said “He wouldn’t have ordered it if he didn’t feel it was necessary.” I asked if I could talk to him and I was told “No” that there was nothing for me to discuss with him. I asked her if she understood what I was about to go through. She brushed it all off and discounted my fears. I ended up in tears. I told her that this process was so hard and scary. She apologized for making lightly of the situation but her voice did not reflect sincerity. I wanted to call it off right then and there. But what would I do instead? I had no plan. I had no one to help me. When I asked my ND what he thought he said he didn’t know. He told me that he would be there to help me prepare for it by strengthening my body and then afterward to restore my health. The dosage scared me. It was the same amount as my first two ablations combined.

Thyroid Cancer - Stretching My Faith on the Long Journey

When I got home from this appointment I had to call the partner to let him know that there would be no way that I could return to work. Talk about stress! Now I could not go back to work and I was about to undergo another round of radiation which usually knocks me on my butt for 6 mos to 1 year afterward. My husband was still looking for work and interviewing but did not have a job.

I went off my Synthroid on April 16th and began my decent into hypo hell for the 3rd time in 5 years. This time I had two children. My son was 5 and my daughter was almost 3 years. How was I going to keep up with two kids. My son was in pre-k and they met 5 afternoons so that was good. But my daughter was home all day and did not take naps and I needed them. I used videos to get her to sit in the chair while I napped. It was so hard!

I wrote this message to a Yahoo group of Christian ladies with whom I had grown close to on April 22nd. It really emphasizes the journey and how emotionally draining it is.

The depression part of this journey has kicked in. :( I am fatigued and achy. Now I am feeling blue and just want to crawl in a corner and cry. I hate this process and am beginning to remember why thyca patients call this "hypo hell". I am on day 7 since stopping my medication. That means there is no more in my system and I suspect that is why I am sinking downward. I have 3 more weeks before I go for my blood test. It seems like a lifetime away.

On another note, I belong to a group of moms (8 other moms in the group) and we have been getting together for 5+ years now. I sent out a message when I found out my cancer was back and not one person responded. So I sent out another message saying that I didn't think they got it. Then I got an e-mail from one and a reply that she got it but would call later (never did), another responded that she would help and call later (also never did), another tried to call while I was on the phone with the ins co but is rallying the group to try to get them to bring meals. My best friend of the group just moved to IL and she has called 4 times, crying and feeling so helpless for being so far away. The rest have all disappeared again. I am so hurt. When others in the group have needed help everyone has pitched in but now they have done this to me 3 times! We started getting together 3 weeks before my first RAI treatment. I forgave that one because we didn't have the bond yet - the next one was harder. This is very hard.

Sorry to vent - I am just feeling very alone today. Guess that's just part of the journey too. I think I need to visit the ThyCa support board for a while. I think I will go SN on the Gymboree loops (not this one) too. I see so many people stressing over what they are buying and how they didn't get that one special piece and I want to scream "Who cares!! Is that what life is about? Will it change what is really important in your life?" I like Gymboree clothing too but when you are fighting for your life it just gets put into perspective.

And so it continued. I must face the reality that I was once again fighting for my life and to remain with my family. I did not want to leave my husband or my children. This was not what I planned. Why did others have a thyroidectomy and RAI and were done and I continued to have issues 5 years later.

My online friends did offer support. The scriptures were a great source of comfort. One friend sent this:

Praying Steph! I know I share this verse with a lot of people, but it's just so good!!!
Psalms 61:2 "From the end of the earth will I cry unto thee, when my heart is overwhelmed; lead me to the rock that is higher than I."
Psalms 62:7 "In God is my salvation and my glory: the rock of my strength, and my refuge, is in God."

This was the point in my life that I would struggle hard with God. I would be introduced to God’s will for our health and what we are to eat. I would learn that God wants us to be well. I visited a Healing Room at a local church that my neighbor attended. She came to my house personally one night to invite me. I was out of my comfort zone but was glad I had gone to let others pray over me. I was on a journey and God was using this time to teach me patience and trust.

Thyroid Cancer - Here We Go Again Preparing for RAI

Then it happened again. On April 15th, 2005 I went to my endocrinologist’s office for a check up and to get the results of my labs. My Free T4 was 1.0, TSH was .92 and Thyroglobulin was 34. I wanted to try to suppress my TSH to see what my Tg would be then because it is lower when suppressed but my Endo would not agree. My normal TSH was .1 or below and this was significantly higher. But like sheep I was herded onward to my third RAI treatment. I was told to go off my Synthroid the next day in preparation for the scan. I couldn’t believe it! Here I was doing all the right things and this happens. I asked my endo if it could just be a remnant of tissue that was not producing Tg and was resistant to iodine that now got healthy? Tg is produced by both healthy thyroid tissue and also cancer. He said not possible. I told him that I had done a liver cleanse, was exercising and had started a nutritional supplement program. He discounted my efforts and sent me on my way. Later I acquired the chart notes from this day. His comments were so far out of line. Obviously he has no clue what nutritional treatments are all about. If it doesn’t come from the Merck manual then he doesn’t think it works. Next are the notes from the doctor. I am sure he never thought I would see them.

Stephanie presents for re-evaluation of papillary thyroid cancer treated with near total thyroidectomy in two separate procedures on 3/01/00 and 4/12/00. She was given 103.3 millicuries of radioactive iodine on 5/26/00, and 150 millicuries of radioactive iodine on 01/19/01. The thyroglobulin decreased but never completely suppressed. Back on 11/30/04 the serum thyroglobulin was 11 with negative antibody on Synthroid .137 mg daily. Now on 04/15/05, the thyroglobulin was up to 34. The Free T4 was 1.0 and TSH was .92. The thyroglobulin antibody less than 1.0. Stephanie is feeling well. She states that she has started a new vitamin and “body cleansing regimen” and she states that she knew that through such “healthy measures” she would make any remaining tumor cells “more healthy” and she was very convinced that the thyroglobulin would increase.

Now let me interject here. How in the world do tumor cells become “more healthy”. Is he an idiot or what? The very nature of tumor cells is unhealthy. If they are healthy cells they are not tumor. I did not say this! I asked if there was tissue that became health and started to produce Tg when it had not been doing so previously. This is just like a thyroid gland that doesn’t produce enough hormone but when healthier it will produce more. I did not do a body cleanse but a liver cleanse. Was he even listening to me??? Back to the Chart Notes……

Examination of the neck shows no palpable thyroid tissue. There is no palpable cervical or supraclavicular adenopathy.

PLANS: I told Stephanie that we need to discontinue the Synthroid now. In one month we will check a TSH level. When it is greater than 50, I will refer her to “local hospital” Nuclear Medicine for an iodine 123 body scan. The results will be called to me and I will then treat with 200 to 250 millicures of radioactive iodine depending upon the results of the iodine 123 scan. We will re-start the Synthroid three days after this treatment and do a total body iodine 131 scan seven to 10 days later. The patient is to call me before the next appointment in four months if other concerns arise. We will recheck a Free T4, TSH and thyroglobulin tumor marker at that time.

He was going to administer a high dose of radioactive iodine but I would not see him for a follow up until 4 months after the treatment. Talk about throwing someone to the curb. I truly felt like this doctor and his staff felt like this treatment was a trip to a day spa with a vacation of 10 days to follow. It was completely inhumane.

Thyroid Cancer - A Job Loss

In February, my husband lost his job. This was another major stress factor adding to my already fragile physical and mental condition. We were not in dire straights financially but things had been tight with a cut in his sales territory over the last year and a half and a loss of almost 50% of our income. We decided that we both would look for a job and whoever got one first would work and if it were me then he would continue to look for a job that he would enjoy doing and not just settle for one that would pay the bills. Our biggest obstacle at this point was a $960 COBRA insurance payment. Once again we could not net this lapse due to my pre-existing condition.

I contacted my old CPA firm and began communications with the partner in my old area. We began to discuss what options I had for returning to work. At one point they had offered me a part-time position with flexible hours but I was pregnant with my daughter and not interested. So we began to look at options.

As time progressed we came to an agreement that I would return 3 days a week with 2 overnights. A client was found that was starting a project at the end of May and I would lead this implementation. I talked with the partner on April 13th and it was almost all set. The partners’ meeting was two days later in the morning and they would approve the budget at that point.

Thyroid Cancer - Working with a Naturopath to Detox

On November 3rd, 2004 I called his office to make an appointment. I had an appointment for December 2 (picture of my first appointment above). Four weeks seemed like an eternity! They had me fill out a health questionnaire online before arriving. He used Metagenics testing to determine the supplements I would need. At my first appointment we sat down and discussed the results of the test. They discussed the symptoms I was complaining about. This is a list of my symptoms:

Achy Muscles
Brain Fog
Joint Pain
Eczema
Slow Hair Growth
Slow Nail Growth
Gastrointestinal pain
Constipation
Anxiety
Depression
Mood swings
Irregular Periods
Intolerance to Noise
Low Stamina
Feeling Cold
Cold Hands & Feet
Insomnia
Sleep Disturbances
Dry Hair
Dry Skin
Need for Naps
Inability to Concentrate
No LIBIDO
Edema
Vertigo
Carpal Tunnel
Varicose Veins
Chronic Athletes Foot
Yeast Infections
Brown Facial Spots
TMJ

The list was long and pathetic and no doctor would listen to me and take me serious until I met this doctor. They did a full exam and found that my liver was so toxic it was bulging out of my rib cage. They listened to my intestines and could hear yeast. I was overweight – I am 5’7” and weighed 173 lbs. I was instructed to come back in a few days to get their “findings” and hear what they recommended.

I returned to their office a few days later and we met in a conference room once again. They told me that I had a toxic liver and also yeast in my intestines. Their recommendation was to start on a program called Metagenics UltraClear Plus. It was a 28 day detoxification program. I would eliminate all gluten, sugar and high glycemic index foods. I would slowly eliminate foods until in the 2nd week I would eat only fruits and vegetables. Then I would begin to add back foods. They also told me that I was very dehydrated. I was never one to drink much water. I drank mostly coffee and Coca Cola. Water just never tasted good to me and in some cases made me gag. It had to be very cold for me to drink it. They asked if I wanted to postpone the start of the treatment given the holidays and I said “No!” . I was tired of feeling poorly and wanted to feel better sooner rather than later. It was only food and my health was more important.

So I began the program. I had to drink the shakes and slowly increase them as I decreased foods. It was hard giving up the carbohydrates and also the caffeine because I was so tired that I depended on that boost. About three weeks into the detox I got a bad upper respiratory issue. Bronchitis set in and then I got a yeast infection. I had read that this was normal for detoxing. The toxins must come out! I made it through and felt better than I had in years but then I started to feel worse again. I have no idea to this day why my body does this but it seems that when I correct one thing another rears its ugly head.

So over the next few months I continued to drink 75-85 oz of water in an effort to try to get hydrated. I exercised 3-4 times a week by using the ball and treadmill. Some days it was extremely hard to do this but I kept trying to get it done despite how I felt because I knew it was good for me. I did feel better than I had in a while so I figured it would just take time.

Thyroid Cancer - My Hormones Are Out of Balance

After getting off the birth control pills my “imbalance” began to level off a bit. I couldn’t seem to lose the weight that I had gained with this pregnancy. I had gained 24 lbs with my first pregnancy and within a few months was back down to a good weight. This time I had gained 39 lbs and could not lose it. I was constantly tired – needing naps every day when my children napped. These were not just little naps either. I would sleep for 2 hours or more depending on how long my kids would sleep. Then I would get them up and put in a video and lay back down on the couch. I just couldn’t’ seem to get on top of it.

Another issue I was experiencing extreme intolerance. I couldn’t handle any noise, had a short fuse and seemed to lose control easily. My son was 2 ½ at this point. He was jealous of his new sister and acted out on many occasions. I had absolutely no patients with him and would end up screaming uncontrollably at him. It was awful. I wondered what kind of mom I was becoming. As my periods returned around 1 year I began to have hormonal issues. For the week prior to my periods I would have severe anxiety. I would be afraid to get out of bed in the morning. I don’t know what I was afraid of but it was so bad that I had to mentally talk myself into getting up and starting my day telling myself that there was nothing to be afraid of. Then for the week after my period I would experience depression. It was like the postpartum blues I had when my son was born. So for 2 weeks of the 4 weeks in a month I was a hormonal basket case.

On July 12, 2004 I had an appointment with my endocrinologist. I told him that I couldn’t take it anymore. I was so tired and had the anxiety and depression. He said it couldn’t be related to my thyroid levels and then told me that it sounded like female issues and he did not deal in female “issues”. So in August I was due for my yearly physical so I asked my OB/GYN to check my hormones. I also was having breast pain in my left breast. He did find anything in his exam so he ordered a mammogram. I was 39 years old so he said “it’s time”. He also ordered labs to check my hormone levels. Of course they were all “fine” according to him but now I wonder. So many other labs were “fine” that really weren’t. He prescribed Zoloft and told me to take them 5 days before my period was supposed to come and that should help with my "issues". I took one and then decided that this was not the answer. I never had depression issues prior to removing my thyroid and now I do. Something was off and I wanted to find it.

So life continued on and I was miserable. On November 2, 2004 I went to a health seminar put on by a local Naturopathic / Chiropractor. I had heard of him years earlier but never investigated it as an option. But now I was desperate to feel better. His talk was on healing the immune system naturally. I went with my parents. After the seminar was over they told people they come up and ask questions of the doctor. I was impressed with what I heard so I went to ask him if he knew how to treat people with thyroid cancer. He said that he had helped patients with this condition and was convinced that he could help me.

Thyroid Cancer - I'm Pregnant & It's a Girl!

On October 7th I was feeling nauseated. My period was late. I decided to take a pregnancy test. I did not believe that it would be positive because I had been told that it would take a lot for me to get pregnant, if at all. I took the test and immediately the second line popped up signaling that I was in fact pregnant. I was in disbelief! It has been so easy. I was convinced that God wanted this baby here for a reason when it had overcome all odds.

I had been reading and reading about pregnancy after a thyroidectomy and RAI. I had learned that as your pregnancy progresses you will need to add more thyroid hormone to help give the baby what they need. The baby uses your thyroid for the first 2 trimesters and then in the third it’s own thyroid begins to take over. My endocrinologist didn’t seem to know this but luckily for me he was willing to oblige to a point. I had appointments with my endocrinologist on November 8, 2001, December 14th, 2001 and March 19th 2002. During that time my TSH rose so my medication was adjusted from .150 mg Synthroid to .175 mgs. My Tg began to rise as well. I was told that we were not going to test Tg until after the pregnancy was over. One of my tests came back as 54 which was quite high. My endocrinologist told me that the proteins for thyroglobulin and those produced in pregnancy by something else were very similar and caused the Tg levels to be artificially elevated so he decided not to test my Tg until after my daughter was born. I do not know if this information is correct because I have not been able to find research to support this information. I have found that Tg is elevated in an iodine deficient state which is what I was – I am convinced. I never took any supplements after the second round of RAI to build my levels back up. I am allergic to seafood so I avoid all things related to fish and seaweed and I did not use salt. Although the use of refined salt is not recommended for iodine supplementation either due to the chloride used in the refining process.

I was so sick with my baby. This was even worse than when I was pregnant with my son. I was nauseated with him in the morning would throw up and then would feel a bit better. With my 2nd child I was sick all day long. I had to take drugs to keep from vomiting all day long. I threw up every morning and sometimes during the day. It was awful. I did not want to eat much of anything. I know my diet was lacking in good nutrients.

On June 4, 2002 I gave birth to a beautiful baby girl. Sierra was born VBAC because I didn’t want more surgeries. It was 34 hours of labor. She was a healthy 8 lbs 5 oz and 19” long. I was so relieved to see a healthy baby after worrying for 9 mos that she would be OK after having 2 rounds of radioactive iodine.

I had a follow up with my endocrinologist on June 25th. This was my first appointment post pregnancy. My levels were not doing well but I was still dealing with coming off of pregnancy hormones so we would wait.

At 6 weeks postpartum I had my follow up appointment with my OB/GYN. We decided that I would go on the mini pill so that I could continue to nurse my daughter. I had done this with my son and had no issues. This time things did not go well. I had a very bad reaction. My brain fogged and I had no coordination. It was awful. I knew it was a problem when one day I started running the water to fill the utility sink to soak some baby clothes and forgot about it for several HOURS! I didn’t notice it until I had flooded my laundry room. The water was running out of the room into the garage through the walls. It was at this point that my husband and I decided that I needed to go off the pill. I just couldn’t deal with the hormones. They were reacting poorly with my thyroid issues. This was only the beginning of what I would deal with after this pregnancy.

Thyroid Cancer - Fired an Endo & Got Endo #2

On March 8, 2001 I returned to my endocrinologist office for a 1 month follow up post ablation. The doctor asked how I was doing. I was soon to find out that this was just a courtesy question. I told him that I was tired and achy and still did not feel well. He told me that my TSH was suppressed and there wasn’t anything he could do for me because I was where I should be. He said that the way I was feeling could not be related to thyroid and was probably “female” related. His abruptness hurt. I suppressed my tears once again until I reached my car and then let the tears flow. Why didn’t anyone care how I felt? It wasn’t in my head. I had maintained a very busy lifestyle prior to my diagnosis. I was a very busy computer consultant who traveled all over juggling up to 4 clients at a time. Now it was all I could do to get up in the morning and fix breakfast for my son and then crash on the couch and eagerly await naptime so that I could sleep again. I was gaining weight while eating very little. It was so depressing.

I decided to contact my OB/GYN regarding how I felt. He agreed to test my thyroid levels and adjust them as I felt necessary in an attempt to make me feel better while I figured out what to do next. I had an appointment set for July with my endocrinologist. I wasn’t sure that I wanted to continue to see the endocrinologist. I just wanted to find someone who would help me. Someone who believed that I still wasn’t well. It’s not in my head.

I began to ask around to family and friends. Did they know of that was a good endocrinologist. I thought that this was the only type of doctor that could manage the thyroid cancer. One of my girlfriends mentioned that she had started seeing an endocrinologist because her doctor had transferred to a new location and had referred her to this new endocrinologist. I asked her if she like him and she said that she had only seen him a few times but liked him. She said that he seemed nice enough. Well nice sounded good after the nightmare I had just been through. Since I had no intention of going through RAI again and was convinced that the endocrinologist I had been seeing knew what he was doing no matter how big a jerk I felt comfortable in switching to someone with less “experience”.

I discussed it with my OB/GYN and he said that he would give a referral to this new endocrinologist. He had checked with the doctor he knew but his wait time was 4 months out and his specialty was diabetes. So I contacted the 2nd endocrinologist’s office and made an appointment for June 22, 2001. It seemed like a long time away.

I continued to feel worse during this waiting time. I just could not regain my energy levels. I tried to lose weight and it was very difficult. It was discouraging. I could breathe something fattening and the weight would come on. I was eating virtually nothing. I tried the Atkins diet but always craved the carbohydrates and would go back to the way I was eating. Knowing what I do now I was not eating well at all. I was consuming lots of comfort foods – refined carbohydrates and sugars, quick from the box and take-out.

On June 22 I went to my first appointment with my 2nd endocrinologist. He had come from Mayo Clinic which was impressive to me at the time. He seemed nice and was willing to listen to all my concerns. I reviewed my medical history to this point. I told him that I was discouraged because the previous doctor wouldn’t listen when I said I didn’t feel well. He would tell me that I was “suppressed” and that was the end of the discussion. This new doctor told me that he was willing to help me adjust my dosing based on how I felt. He ordered lab tests and told me that he would let me know how I was doing. When my labs came back my Tg was at 10.8. This was a HUGE improvement over the 346 that had been tested in January prior to my 2nd RAI so I was encouraged. This endocrinologist told me that this number would probably come down in the next few months. My next appointment was set for September 14th.

I was starting to feel better by the time I returned for my 2nd appointment. My labs were run prior to my visit so we could discuss the information at my appointment. My TSH was 1.5 and my Free T4 was 1.1. The Tg (cancer marker) was down to 4.4. The doctor told me that he was pleased with this level. He said that as long as this level stayed below 5 he would be happy. This was wonderful news. It seemed that for once in this journey that things were changing for the better. We discussed that I wanted to get pregnant again and he agreed that it would be OK if I tried. I was now almost 36 years old and I did not want to wait much longer. My husband was 41 so we were not getting any younger. I had read that post thyroidectomy and RAI it may be difficult to get pregnant which is another reason why I did not want to wait much longer. My son was now almost 2 years old.

Thyroid Cancer - RAI #2 and a Trip to ER

My RAI was administered on a Friday so that my husband could be home for the first few days after I received it. On January 19th I entered the hospital once again for an ablation treatment. I was handed a pill bottle with two pills for a total of 150 mCi’s of I-131 and told to swallow them while the technician watched me to make sure I did. Then I exited the hospital, returned to my car and drove home. I knew the drill. It was January this time and the lower level of our home was cold. I blocked off the open stairway with a blanket to keep the heat in the family room. I ran a small space heater to keep the room warm. I pulled out the hide-a-bed and settled in for the week.

This treatment hit me harder. I was nauseated by the evening. By the next day my saliva glands hurt as did the glands in my neck. I sucked on lemon drops to try to get the saliva flowing. I resigned myself to the fact that I was going to feel rotten. After all I had ingested a lethal substance in an attempt to kill a part of my body. It kind of puts it all in perspective when you think of it in these terms. I was given instructions that I could restart my thyroid medication in 2 days and stop the LID after 36 hours. At least I knew what I was supposed to do this time. All that was left was to get well.

My son was sent to my girlfriend’s house for the week while my husband was at work. The sad thing was that we ended up having to pay her babysitting services for the week. If I had a friend with cancer and needing treatment with no one to care for her child I would not charge them for my services. But what were we to do? We needed someone to care for him. It just seemed to add insult to injury that no one was willing to just help us.

My poor son got the stomach flu during this week. He began throwing up on Wednesday night. I could hear him crying while I was in the basement and it killed me not to be able to go to him and comfort him. He had thrown up all over himself and his bed. My husband was scurrying to try to get him cleaned up. It was 2 or 3 AM. It was 5 days past my RAI treatment so I decided to come upstairs and help. My husband took Dawson out of the room to put clean pajamas on him and wash him up. I stripped the crib and took the clothing to the washer and started a load and returned to make his crib with clean sheets.

The next day my husband took him to my girlfriend’s house and the poor baby was sick. My friend told me that he just lay in her arms and slept. He had a couple of diaper blow outs while in her care. I felt so guilty. He should be home with me. Wasn’t that the reason why I was at home, to care for my son? Yet here I was unable to barely care for myself and wondering just how many more years I would have to live and be with my family. The following day Dawson was still sick. We called my sister in law and asked if she could come to help me with Dawson. She could not. So we ended up leaving him home with me. I kept him in his exersaucer and stayed 7 feet away from him. I did not hold him on my lap or have him near me. I just cared for his immediate needs. I wanted to cuddle him and hold him. But I couldn’t. This stupid cancer was stealing more than I knew from me. I prayed that God would protect him from whatever danger he may be in by being home with me before the 10th day when I would be allowed to be with him.

On 1/25/01 I returned to the hospital for my post ablation whole body scan. This would be the 4th one I would receive since my diagnosis. The scan took about 30 mins and when it was finished the technician told me that they would run it back and make sure everything was OK. A few minutes later she returned apologizing profusely. She explained that when someone put the film in the machine they had gotten finger prints on it and we had to do it all over again. So I laid on the table for another ½ hour. Does anything go right the first time I wondered?

I seemed to be doing well after the ablation. I was back on my medicine and beginning to feel more normal. Nagging symptoms of hypo haunted me. I continued to ache and feel tired. I hoped that as time went on I would feel better and regain my energy.

On February 3rd for some unknown reason I started to itch. As the day went on I noticed that the itching got worse. I never thought to look at why it was itching until it had moved from my waist to my torso. When I finally looked I saw huge circles all over my mid-section. HIVES!!! They continued to creep up my body so I decided to go to the ER. When the doctor checked me in he asked if there was anything that I thought could have caused them. I told them that I had just undergone a radiation treatment a few weeks earlier. The doctor told me that it could not be related to the treatment. At the time I knew less than I do now about my body and health. Now I look back and think “You moron!!” Of course it was related to the radiation. My poor body had major inflammation from all the toxic substances you have bombarded my body with. What else is it supposed to do but revolt? I was given Tagament and Prednisone and told to take them and within a few hours the hives were gone.

Thyroid Cancer - It's Back Again. Preparing for RAI #2

On November 7th I returned to the Endocrinologist for my 2nd appointment. He did a physical neck check, reflexes and blood pressure and then gave me a lab slip to check my levels. Why these doctors don’t have your labs completed BEFORE the appointment I will never understand. There is nothing to talk about at the appointment and you end up having a follow up phone call to discuss the results. Again, I wish I had copies of my lab tests from this point in my journey but I don’t. When my endocrinologist called me he told me that my thyroglobulin was still too high as were my antibodies and I needed to prepare for another round of RAI. I was not excited about this and when I asked him when he said “As soon as possible”. He told me to go off my Synthroid and that he would see me on December 27th for a follow up. He would check my levels again at this time. I was to start my low iodine diet (LID) on the 15th of December. This was depressing because Christmas was coming and it meant that I would not be able to eat the normal foods of the season.

A low iodine diet requires the removal of ALL items containing salt. This means no seafood, dairy, foods with carrageenan, agar-agar, algin, alginate or nori, egg yolks, red dye #3, chocolate, molasses, soy and potatoes. If you are curious just what this means take a look at a label on something you eat. I’ll bet you find a form of iodine or potential iodine in the product. So in a time when you are the most tired from being off your medication and going hypothyroid the most effort is required in preparing meals from scratch.

On December 27th I returned to my endo’s office and we reviewed my lab tests. My TSH had not risen to a satisfactory level so I had to wait. My doctor told me that he would like to ensure that I was not saturated with iodine prior to the RAI scan and treatment so he wanted me to do a 24 hour urine test. We would do this in January before the RAI.

On January 8th I had my pre-scan appointment to get the results of my lab tests. My TSH was 96.3 and Tg was 346 so I was all set to have my scan the following week. As we talked about the treatment I asked the doctor to give me advance notice as to when he would schedule the ablation because I had to find someone to care for my son who was now 15 mos.

The scan was scheduled for the 15th of January. I performed the 24 hour Iodine urine test and the results were a “5”. I a not sure what the unit of measure is for this test but my endocrinologist told me that this was the lowest level he had ever seen in all of his years of practice. This doctor was in his late 50’s so this was quite a few years.

On January 14th I arrived at yet another hospital to swallow a pill for the I-123 body scan. I was given 5 mCi’s of I-123. I returned the next day (1/15/01) for scanning. The technician in the nuclear medicine department did a full body scan along with an uptake. The uptake registered at .7% which would be the normal uptake at 8809 hours. This was an indication that of the dosage amount I received very very little was taken into my body and held. The normal range according to the report from the department was 8-33% after 24 hours.

After the scan and uptake were done I was instructed to take the folder with the results up to my endocrinologist. I waited a few minutes and then was escorted back to his office. His office was cold and sterile just like the rest of the office. I handed him the folder and sat in the chair opposite his desk. He took it from me sat down and then said “Now be quiet while I write a few things.” I was taken aback by his bluntness. As I sat there waiting for him to complete whatever he was doing I scanned his room. Behind him were many books on shelves and then my eyes zeroed in on a sign behind him. It said “Member of the Christian Doctors Association”. This should have brought me comfort but what was to follow in the next few minutes would discredit any positive thoughts I may have had.

My eyes returned to the papers he was writing on. I saw him reach for a small pad of paper and begin to write. It looked like a prescription pad. I couldn’t resist at this point and interrupted him. I asked “What are you writing?” He told me that he was writing the prescription for the RAI. I asked him when it was for and he replied “for now”. It was at this point I reminded him that I had no one to take care of my son if I returned home “radioactive”. I reinforced our prior conversation that I would need to have warning before my treatment so that I could make arrangements for the time I needed to be away from him. I still cannot believe what he did next. He put his pen down and looked me in the eyes. This was the first time he had looked at me since I entered the room. Then he proceeded to give me this speech: “Look I am not a salesman here. If you don’t want to do this then I am not going to force you. It doesn’t matter to me if you don’t want to do this. We can cancel this right now”. Those words are burned into my brain. I could not believe the insensitivity that this doctor portrayed. I was tired, achy and scared. I was undergoing the second RAI treatment in less than 1 year when it was supposed to be done in one treatment. I remember the tears welling up in my eyes and I told myself not to cry in front of him because it would only make things worse.

I asked him how long I would need to be away from my son after treatment. I already knew that the general recommendation was 10 days but I wanted to know what his thoughts were. He said “30 days”. I was a bit shocked and said “What am I supposed to do with my son. I am a stay at home mom and don’t have anyone to help with my son.” What little respect I had for this doctor at this point quickly left as he uttered the following words: “Just put him in a high chair in a corner and throw some food at him. He will be fine.” Oh my goodness! Has this man no heart. My baby boy was 15 mos old. He needed to be cuddled and rocked and sung to. I could never do that to him.

I told my endocrinologist that I would check with my husband on the best time to have the RAI and would schedule it with his office manager. I left the building and got in my car. Again I broke down. How could a doctor that had sworn to “do no harm” do so much harm to his patient emotionally? Didn’t he know how hard this was? Hadn’t he seen many patients go through this journey into hypo hell? Your hormones rage out of control, you ache all over and you can hardly stay awake. It is truly the worst feeling I have ever had in my life. It had gone from bad to worse. A nice personality ENT that didn’t know how to treat thyroid cancer to a nasty endocrinologist. He was skilled in his field but what was that worth if emotionally he was destroying my spirit?

The following day I called and talked to the office manager. We scheduled my RAI treatment for January 19th. Before I hung up I asked the office manager if I could ask her a question off the record. She said yes. I asked her if the Endo was always mean to his patients. She asked why and I told her my story. He had been short with me on other occasions but this time he was down right nasty. She said and I quote “Oh honey that’s just the way he is. You need to learn to deal with it.” Deal with it, I thought? But I couldn’t think of what else I could do at that point. I just needed to get through this RAI treatment and get well.

Thyroid Cancer - My Introduction to an Endocrinologist

On July 19th I entered an old dingy building for my appointment with the endocrinologist. It was not like the upscale medical offices I had grown accustom to. It reminded me of hospital hallway scenes from the Waltons. Gray walls and tan speckled floors with stainless steel kick plates surrounded me. The chairs in the waiting room were a throw back from the ‘70’s. They were orange, gold and avocado colored vinyl. It was cold and uninviting. I was soon to learn that this was the demeanor of the doctor I was about to see.

I don’t remember much about the appointment itself. He breezed into the room like he was God’s gift to thyroid patients. He did the standard blood pressure, reflex and neck check with swallowing water. He ordered lab tests for TSH, T4, Tg and Anti-bodies. He sent my blood to Dr. Carole Spencer’s lab claiming it was the only place to have thyroglobulin analyzed. He definitely agreed that my care to this point had been sub par. He gave me a prescription for Synthroid telling me that it was “The Gold Standard” and that I would not be able to stay suppressed on any other thyroid medication because of potency variations. He gave me a couple of cards of samples and sent me on my way.

My information regarding my care (or the lack there of) from this doctor is sketchy. I did not acquire any copies of my labs. I was trusting that all that could be done was being done.

No new issues were discovered in my labs so a follow up appointment was set for November 7, 2000. My thyroglobulin was still detectible and I had antibodies but it was only 2 mos post ablation and my endocrinologist told me that my markers could come down for up to one year because the cells had damaged DNA that would try to repair the cells and would eventually give up and die. So I was waiting. Three and a half months seemed like forever. But I had a reprieve from the medical hell I had just gone through. I could just enjoy my summer and my son and begin to adjust to being a stay at home mom.

On August 4th my life was about to be turned upside down again. I have heard it said that God never gives you more than you can handle. I honestly believe that he pushed me to the limits. On the eve of this day my husband arrived home with a somber look on his face. When I asked him what was wrong he informed me that they had eliminated his position and he had been let go from his job. I was stunned. I had just quit my job not 1 month earlier and now he lost his. What would we do for insurance I wondered? This was certainly not the time to be without. Understanding insurance I knew that I could never let my coverage lapse or it would be possible to be denied for a pre-existing condition. Thankfully DJ had been looking for a new position prior to this and within just 10 days he was employed again. This was definitely not a stress I needed. I am thankful to God again for his faithfulness.

There was a wait time before we were covered on the new job's plan. We needed insurance from the beginning of August until the end of October. We had to take out COBRA insurance to ensure that we were covered. The cost per month was almost $500. Again true to God’s faithfulness one of my old clients contacted me when they heard that I was no longer with the firm. They asked if I would be willing to come and work for them to clean up some outstanding issues on their system. Since I was the one who had designed and installed their accounting system it was a great fit. I was able to work one day a week and they agreed to pay me $55 per hour! What a blessing. My girlfriend watched Dawson each Monday for $25. We were able to easily cover the cost of our insurance plus catch up on the medical bills from my treatment. I worked this job from September 2000 until the end of March 2001. I could arrive at 9 am and leave by 4 pm which worked out well since I couldn’t get up early given my fatigue from all I had been through.

Thyroid Cancer - The Long Road to Recovery & then I got an Amalgam (Mercury) Filling

On June 9th I contacted my Endocrinologists office to ask for a new prescription for Synthroid. I had been on .137 mgs and my TSH was .9 which was not suppressed. My Dr. made the comment that if it weren’t for the high Tg he would have increased my medication to suppress my levels but since I had to go off of them he was not going to do it until after the RAI. Well apparently he forgot this conversation because when I called to get an increased dose he refused to give it to me. More frustration on my part! I knew what I had been on was not enough before and doubted it would be now. So I continued on the .137 mgs and waited until the next blood test.

On June 29th I called my doctor again to let him know that I was not feeling well and felt like I should have my labs checked. His response back – through the nurse – was that I needed to be on replacement for 8 weeks before they would recheck my levels. Why he picked 8 weeks out of a hat I have no idea. All reputable websites including the one for Synthroid said that you should check levels every 6 weeks. So I waited again.

On July 18th I called my endocrinologist again to tell him now I had vertigo and was light headed with body aches. I swear I just had to keep getting worse and worse before they would finally let me get my levels checked. So he finally agreed to check my TSH & T4.

When my levels came back from the lab my TSH was 2.23 and my Free T4 was 1.7. The nurse called me on 7/27/05 to let me know that the Dr. had signed off on the labs and said they looked good and there would be no change in my thyroid medication dose. I asked what the numbers were. I was shocked that he said they were OK. I explained to her that I was a thyroid cancer patient and that my TSH must be suppressed to .1 and the number she gave me was far from that. She stated that she would talk to the Dr. and get back to me.

A few hours later she called me back to tell me that the doctor told her that it had not been 12 weeks yet and that the TSH may decrease further. Now it is 12 weeks??? When I called in June it was 8 weeks. I was getting more and more uneasy. I wondered if he even pulled my chart when he looked at my labs to know that I was a thyroid cancer patient. I was desperate. I felt lousy. Give me the drugs, I thought!!!! Once again I ended up in tears. It is hard to maintain your composure when you feel so horrible and so helpless at he mercy of an uncaring doctor. It was all about the numbers and not about how I felt. But my persistence worked and he increased my meds to .175 mgs – yes that’s right he went up two dose levels. I felt like he did that just to spite me knowing that I would go hyper and have to call again and beg for a new level. I did not like this game we were playing nor did I enjoy not being able to discuss this situation with the doctor. I have copies of my chart notes so I can see exactly what was conveyed to the nurse and I am not impressed.

Over the next few months I concentrated on trying to get my health back. I used some Metagenics detoxification products to get the radiation poison out of my body. I ate organic food, juiced vegetables and continued to take vitamins and get Chiropractic adjustments. I went weekly for the first 2 months and then bi-weekly from that point on. I needed to keep the toxins moving out!

In July I went to the dentist for a check up. I was apprehensive because each time I had RAI I would also get cavities. It seems quite comment for ThyCa patients. This time was no exception. I was told that I had a cavity. So an appointment for August was made. They briefly told me about what they would use – Amalgams. They said they had composites but they were more expensive and not covered by my insurance so I would probably not want that. Yes that was a consideration. We had just come off a long unemployment stretch with huge COBRA payments. I had heard that amalgams were not good but didn’t know why. I was so tired and beaten down that when it came time to get the work done I just let them put the amalgam in. After all I already had a mouth full of amalgams so what was one more? Boy was I sorry afterward.

Within a day of placing this amalgam I started having a burning sensation in my mouth. My entire tongue was on fire like I had drunk hot coffee and burned my tongue. It would not go away. There were days of lesser intensity and then days with more to where it was all I could think about. I asked my ND and he had some suggestions. None of them worked. It was driving me crazy!!! I would not put all the pieces together about this issue until almost 1 year later.

Thyroid Cancer - You are done! Cured - NOT - Time for a 2nd opinion

On June 6, 2000 I went for my follow up appointment with my ENT post RAI. He took my vital signs and looked me over. He asked how I was doing and then told me that I was done. I looked at him oddly and said “Done, what do you mean?” He said, “You are done. You do not need to see me again.” I said “Never?”. He said “No, not unless you have problems.” I asked him who was going to watch me over the next few years. He told me that I did not need to be watched and that the RAI had taken care of the cancer. I got a very uneasy feeling. As I mentioned previously I had joined some e-mail groups that were formed by other thyroid cancer patients. I knew that I was not done. I knew that I would need to have my thyroid levels checked and that I needed to have my TSH suppressed to .1 or below. I had learned that someone would need to watch my thyroglobulin (Tg) levels to determine if there was active cancer. Experts stated that scanning was required at one year post RAI treatment to determine if the treatment was successful. I left the office knowing that I needed more than he could give and questioning my treatment and care to this point. Had we done the right things I wondered?

After a few days of thinking and reading I decided that I needed to seek the opinion of another doctor. By this point I had learned that Endocrinologists were the specialist of choice for thyroid cancer. I talked to my OB/GYN to get a referral to the local Thyroid Specialist. I called and scheduled an appointment with the local thyroid endocrinologist for July 19, 2000.

I contacted my ENT’s office and told them that I wanted copies of everything in my file. They did not want to give it to me which made me nervous. I told them I had a legal right to them. They told me it would take 24 hours. I arrived at the office the following day to pick up my records and they were not ready. The office manager told me that I could not have them. I told her I was not leaving until I had them in my hands. A few minutes later my doctor appeared in the waiting room physically shaking. He questioned why I wanted my records. I told him that I was not comfortable with his comment that I was done with my treatment. I told him that the research I had done on this type of cancer dictated that I be watched closely for 5 years after removal/treatment. I commented that many things should have been done. There were no antibodies checked, no thyroglobulin levels and no low iodine diet followed prior to RAI. I emphasized that I wanted to see someone who had experience with thyroid cancer and asked him why he had not referred me to someone who was experienced. He had no answer and disappeared to have his office manager prepare my records. Looking through the documents I felt like there were pages missing. I was to find out a few years later in 2005 when I requested records from the hospital that there were in fact documents regarding my treatment missing.

I had high hopes for my appointment with the endocrinologist. I felt a sense of relief that I would be seeing someone who was skilled in thyroid issues and more importantly had treated many patients with thyroid cancer.

I was nearing the end of June and a decision needed to be made about my job. My leave of absence was over on July 4th. My surgeries and tests were over for the most part but physically I was not well. I was tired and had substantial brain fog. The thought of getting up at 6 am or earlier to get on an airplane to fly to a client for 3 days was not appealing at all. I did not know how I would manage to be effective in my job. After discussing it with my husband we decided that I would resign from my job at the firm. It was somewhat hard for me to give up the only real career I had had. I really loved what I did but in my current condition there was no way I could handle the stress and pressure of the job. The managing partner told me that I was always welcome back when I regained my health and felt ready. So on July 3rd my resignation was tendered and accepted. A sense of relief fell over me that this decision was made.

I had been out of work for almost 8 mos at this point and my income had comprised 60% of our total household income. Thankfully, shortly before having my son I was given an inheritance from my grandmother who had died the previous year. We were able to pay off our house taking a large burden of over $1,200 per month out of our budget. We were also able to pay off both of our car loans giving us another $500 per month to pay for other necessities. Thankfully we were debt free after these items were paid off and helped relieve the financial stress that would have otherwise plagued us.

Thyroid Cancer - RAI and Hypo Hell

On May 18, 2000 I met with the radiologist to receive the RAI for the preliminary scan to determine the ablation dose. I was given 1.8 mCi’s of I-131 and told to return the following day for scanning. Years later I learned that using I-131 for scanning was controversial because it has a tendency to “stun” the cancer and thyroid cells and not allow them to take up the ablative dose effectively. Because it has an 8 day half life I had to wait another 8 days before receiving my ablative dose. It was 16 days after the lab test reading of 102 TSH. I was so hypothyroid by this point. I don’t know how I managed to take care of my son through this time. It was only by the grace of God because I had no one to help me during the day. My husband was wonderful and pitched in to help when he came home.

Through my research and involvement on the thyroid cancer e-mail groups I was to learn later that standard protocol was to go on a low iodine diet 2 weeks prior to receiving RAI in order to starve your body of iodine so that it would take up the radioactive form and kill the tissue. I was taking a multi-vitamin high in iodine intended to help with thyroid issues thinking that I was doing my body good. Consequently not much of the first ablative dose was effective.

I had done some research prior to my ablation and found that in previous years a patient was placed in a room isolated from all other individuals. Food was brought to their rooms and placed outside the door so that the individual was not exposed to the patient. The patient then took the meal inside their room and ate it. All remaining food that could be flushed was and the rest placed in a trash can located inside the patient’s room. All articles such as books and magazines had to remain in the room when the patient left because they were considered toxic materials. Three to four days after the RAI was administered hospital personnel in protective gear would enter the room with a Geiger counter to find out how radioactive the patient was to determine if they could be discharged.

On May 26, 2000 I entered the hospital, swallowed 2 pills for a total of 108 mCi’s of I-131 and returned home to spend the next 10 days in the lower level of my home. The instructions I was given for precautions were frightening. I wondered how it was determined that an individual given a radioactive substance was deemed to be safe to return home with a 6 month old child in close proximity. I was to flush two times, eat off of paper / disposable items, sleep alone for 5 days, wash clothing separately for 1 week, avoid contact with pregnant women and children for 10 days, and maintain 7 feet of separation from all others for 5 days. In bigger, bolder print on my instruction sheet was “Time and distance equals exposure.” How frightening! I figured it all probably had to do with money. Insurance companies do not like to pay for anything “unnecessary”. I guess keeping my family save isn’t that necessary. Little did I know I was to do this 2 more times.

My RAI had been administered on a Friday so that my husband could be home to take care of him. My husband took a week of vacation during this time. I was so thankful that he could be home so that I did not have to worry about him.

That night I laid on the couch watching TV in the lower level of our home. We had a daylight basement with a family room, full bath and two finished bedrooms. One was an office and the other a workout room. The family room had a pull out couch and this was to be where I would sleep for the next 5 days. I didn’t feel any ill effects that evening and began to think that all the horror stories I had read were not going to happen to me. I fell asleep that night only to awaken the next morning feeling like a major bout of the flu had hit me. My head hurt along with my joints and my stomach was upset. I slept for the next two days and don’t remember much of what occurred.

For subsequent days and nights as I felt better I spent time on the iVillage.com thyroid cancer message board. There were so many encouraging ladies on this board. They helped to ease my fears and encourage me when strange symptoms occurred. They helped me to keep pushing on even when I felt lousy and didn't want to deal with it all. I remember crying as I would type. I didn't know who these ladies were yet they understood exactly what none of my friends or family could ever know. I don't know what I would have done had I not found this support.

On June 1st I returned to the hospital for my whole body scan (WBS). How I drove to the hospital I still do not know as I look back on my condition. The test took around 1 hour to complete. The procedure is easy to perform. The patient lays on a flat table as a metal plate with films approximately 1 ½ ft square passes slowly over you. As it moves over your head you are instructed not to move or if possible swallow. As I was trying to sit up the vertigo hit me very hard. I felt very dizzy. I told the technician that I was so hypothyroid and got dizzy. She asked if I was on thyroid medication and I said “No”. My ENT had not given them to me yet. She said that I obviously needed them and that I should contact my doctor to get the prescription.

I contacted my ENT’s office when I got home and asked when I could get my thyroid replacement hormone. It was met with resistance. I told them that I couldn’t take it anymore. The vertigo was so bad that I could hardly stand up without passing out. The nurse in the office told me that I would have to wait until my follow up appointment with the doctor which was the following week (6/12/00). I was frantic and in tears telling them that I couldn’t wait. I had to have hormones soon or I was going to loose it. Mentally I was unable to think. I was so foggy brained and experiencing huge hormonal issues relating to anxiety and depression.

To recap, I had lost ¾ of my thyroid on 3/1/00, the remaining amount on 4/12/00 and TSH test run on 5/8/00 with a value of 108.2. It was now 24 days later and I can only imaging how high my TSH was at this point.

I called my OB/GYN’s office after getting off the phone with my ENT’s office. I explained to him my situation and how desperate I was. He told me to come to his office that day and he would see me and prescribe some medication for me. I remember sitting in his office in tears because I felt so awful. The scary thing is that I had driven to his office. I think God’s protective hand was on me through this time. Looking back I realize just how sick I was. My OB/GYN prescribed .100 mg of Levoxyl. I was so thankful to finally have medication in hand. My ENT’s office was not happy that I had gone around them to get medication. It felt like a power struggle that I was in the middle of. But I had a baby to care for and wanted to get my life back and no one seemed to care that I was a person beyond the chart.

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.

Thyroid Cancer - The Official Diagnosis - The Big "C"

I returned to my ENT’s office on 3/12/00. I was supposed to go to have my stitches removed. I went by myself. I did have my son who was now 4 ½ mos old. I was placed in the examination room. The doctor entered and removed the stitches while asking how I was doing. I said I was doing OK all things considering. He said I had healed really well and he was pleased with my progress. After removal he stated that he was going to quick go and grab the pathology report.

This was the point that would forever change my life. I remember him returning to the room, closing the door and standing by the door just to the right of it. As he began to read he fell back against the wall and said “I am so sorry I thought it was nothing.” I sat there not quite realizing what was happening. He looked at me and said “I did not even look at the pathology report before today because I was so sure it was nothing. The report shows that the nodule was malignant and that it has spread to your lymph node.” He went on to explain that he never takes out lymph nodes and that this one must have accidentally been removed. I was stunned. I had heard the “C” word. I looked to my left and saw my sweet baby boy sleeping in his infant carrier. I said nothing. I did nothing. My doctor said I am surprised you are acting this way. I looked at him and quietly said “I don’t know what to say”. Before I left he said to me “I do not know how to treat this but will contact my oncologist friend to find out.” He told me that he would be in touch to let me know the next step but discussed chemotherapy and radiation. It is all a blur to me. I don’t think I really wanted to know. I wanted to leave, run anywhere but there. I wanted my husband and he was not there. I wanted someone who could tell me that it would be OK and that this was not really happening. How was I going to tell my husband that his wife was diagnosed with cancer when we had a new baby?

I walked out to my car, placed my son in the infant carrier base in the back seat, slid into the drivers seat and burst into tears. I cried and screamed and asked God why? Why was this happening to me? I grabbed my cell phone and paged my husband. I waited and no response so I called my friend. She sensed that I was upset and through my tears I told her what had just transpired. She told me her mom and sister were at her house and that they would all be there to support me and to come over. I drove to her house and broke down. Thank God for good friends who are there for you when you need them. My husband called me while I was at her house. I feel bad as I look back. This poor guy was working out in his territory and found out that his wife was diagnosed with cancer. I can only imagine the thoughts that went through his head. I do remember him telling me that we would talk that night and that we would get through this.

That night after dinner while still sitting at the table I called my mom to tell her that I had been diagnosed with cancer. I remember avoiding it all day not wanting to call. I am an only child. I remember telling her that I got my results of the pathology report and that it was malignant and had spread to my lymph node. She was quiet on the other end and did not say much and then hung up. Later she told me that she had cried and gotten angry at God. I wonder why it is God that we curse so quickly when bad things occur. It is to God that I owe my life and strength through this time.

Thyroid Cancer - The Nuclear Med Scan, Fine Needle Biopsy & Partial Thryoidectomy

The next thing he ordered was a nuclear med scan. The test required that I come in to the nuclear medicine department at the hospital and ingest a pill containing 33.2 uCi of I-123 and then return the next day (1/18/00) to scan my neck. I remember this was a difficult time. It was now the 2nd week of January and I was nursing my son. Given that I was going to be ingesting a radioactive substance I was told that I would have to pump and dump for 3 days. So I stocked up milk for days before my test to prepare for feeding my son with breast milk from the freezer. I was determined that my child would not be fed formula and I would continue to nurse him when it was safe again.

The anxiety was heightening. My son was now almost 2 ½ mos old and I was set to return to work on February 2, 2000. The doctors continued to tell me it’s probably nothing over and over again. I tried to believe them but with a new baby it was hard to not worry. A decision had to be made about my work. I had a job that required travel and that was not conducive to the testing I needed. I decided to take a 60 day leave of absence from my job.

The nuclear med scan was inconclusive and it was at this point that my OB/GYN told me he was over his head and he needed to refer me to an Ear, Nose and Throat doctor. This was the wrong choice for this form of cancer. I should have been referred to an Endocrinologist. Since he believed it was probably nothing I don’t think much thought was given to future care or the appropriate doctor.

At the end of January 2000 I saw my Ear, Nose and Throat doctor. He evaluated my tests and we discussed that it would be a good idea to do a FNA (Fine Needle Aspiration) to determine what we may be dealing with. Again I was told that in most cases these nodules are benign and are “nothing”.

I arrived at the hospital on February 2, 2000 to undergo a fine needle biopsy (FNA). I was brought into a small examination like room with a table. I was placed face up on the table and given a pillow for under my neck to help stabilize it. I was asked if I would like to have it “numb” or not. Oh my yes!! I do not want to feel this at all. So they swabbed my neck with a surface anesthetic and then gave me a shot so that I would not feel it internally. I was instructed to lay very still as the Dr inserted a needle into the cysts and placed the fluid / cells that were drawn out onto slides for analysis. It wasn’t as bad as I expected. I did not feel anything and suffered no after effects.

On February 11, 2000 I returned to my ENT’s office for follow up to get the results of my FNA. The results of this test showed “focally atypical follicular cells”. He told me that these cells were abnormal but it still could not be determined if it was a malignancy. He again assured me that most of them are nothing and that we would take out ½ of my thyroid and it would be fine. If the other ½ of my thyroid did not pick up the slack for the half that was removed I would be given thyroid replacement hormone to take care of it. I was told it was easy and would just require taking a little pill for the rest of my life. My doctor advised me that the surgery might damage the laryngeal nerve resulting in a hoarse voice. This was somewhat upsetting to me. I was a member of an a ccapella He went over the incision, placement scarring and bleeding. “We” decided to schedule the surgery for a right lobectomy. I place the “we” in quotations because looking back on this there really was no coordinated effort. I was a tired new mom scared out of my mind as to what was happening and not understanding anything. I had no idea of the importance of my thyroid what it controlled or what options other than the one I was being hurried through were available. So onward I went …………blindly.

On March 1, 2000 I entered the hospital to have a right thyroid lobectomy. My mother came and took care of my son. My husband took me to the hospital. I had to stay over night. I remember pre-op. They had to start an IV. An older lady approached me and proceeded to try to start my IV. She made the first attempt on the inside of my left arm. She poked through the vein. Next she tried my right inner arm and poked through that vein. Then she went to my left hand and poked through that vein. As you can imagine I was beside myself at this point. I told her to go get someone who could get this done. I was a nervous wreck and in tears. Another nurse came and said a prayer and then proceeded to insert my IV. I remember her saying “Thank you Jesus”. I told her I agreed and it was at this point that she told me she had prayed for a positive result. She departed and returned a few minutes later with 3 latex gloves filled with ice. She placed them on each of my veins where the previous nurse had attempted to start the IV. I looked like a junky with huge bruises on my arms. Shortly before they took me to the operating room the doctor came in to talk to me. He wanted to make sure that I was ready. He marked my neck with a black marker to show the side of the thyroid he was to remove.

I remember being wheeled into the operating room. I laid on the table thinking about all the people that were praying for me. There were friends, family and church members from both my church and my parents and those of other churhes as well. It was very comforting. I remember praying myself that God would spare my life so that I could return to my husband and son. The next thing I remember is someone calling my name and feeling freezing cold. I was shaking and crying. They told me it was the anesthesia and piled warm blankets on my body. The doctor came in the room a while later and told me that he had removed 75% of my thyroid because when he got in it “looked bad”. I now question why no frozen section was done during surgery. I will never know at this point in my journey but this would prove to be an issue later when my pathology results were received.

I was wheeled into my room to rest for the night – although this is an oxymoron since in a hospital you do not get to rest with all the poking, prodding and blood pressure reading. In the morning my doctor and an intern entered my room. They had run some labs during the night. The tests indicated that my calcium levels were low so they suggested that I get some additional calcium. When I asked how I should do this I was told to take 5 or 6 TUMS per day. I was stunned! Did they not know that this was an antacid and taking this would reduce my stomach acid? Why try to fix one thing with something totally unrelated? This was to be the beginning of many more medical “treatments” I would question.

A few days after being released I began to feel tingling in my face. I called my ENT and was told that this was the calcium deficiency and was probably due to the parathyroid glands being traumatized by the thyroid surgery. I added more calcium that I had purchased from the health food store and that helped clear up my symptoms.

Thyroid Cancer - The Diagnosis Process - The Ultrasound

My intention with this blog and the ones to follow over the next few months is to document my medical history of my journey through thryoid cancer. My hopes are that it will help someone else who is either newly diagnosed, in the middle of their journey or has gone through the same thing. I am finding that this process has created a sense of healing and strength as I remember what I have been through and realize that I have in deed made it through.

I will be adding a bit of my story continually so check back for the new installments. :)
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My journey begins in March, 1999. I was at my annual physical with my OB/GYN. He was performing a lymphatic / endocrine check and casually mentioned that my thyroid was swollen. I didn’t ask what that meant nor did he offer any words of direction as to whether I should do something or have it checked by someone.

One week later I was to discover that I was pregnant with our first child. I was 33 years old, working for a regional CPA firm, had just made manager and was flying high in my career. I was working 70-100 hours most weeks and found myself on a plane early Monday morning only to return home late Thursday evening. I was sleeping little and eating poorly. My average breakfast was a pop tart and a cup of coffee. Morning snack was a can of Coke and a candy bar or Little Debbie snack. Lunchtime was usually fast food like Mc Donalds or Wendy’s where I would pile on another Coke and some fries and a burger or chicken sandwich. While on the road room service was the norm because I was always under deadlines with my clients and had too many clients on my plate to allow any time to rest and rejuvenate from the stress of the day. When my weight reached a level above which I would tolerate I would join Weight Watchers and get back to a slightly healthier life and force myself to exercise while traveling. This continued for the 4 ½ years I was a consultant. Next came pregnancy.

I was so sick throughout my pregnancy. I eagerly awaited my 12th week hoping that somehow the nausea would subside but it did not. I vomited every morning and throughout the day so I ate what I could keep down. This consisted of chicken, grapes, bagels, double cheeseburgers, fries and ham & egg croissants for breakfast. I limited myself to 1 Coke a day because I didn’t want my baby to get too much caffeine. Some days I could eat more and spicy Mexican or Italian food hit the spot. Vegetables were a virtual no go. I could not stomach the thought of a vegetable so I did not eat them. I am sure I ate a few but it was very minimal. As the fatigue continued from pregnancy and I am sure also due in part to my failing thyroid I cooked less and less and picked up a variety of takeout items. My husband would treat me with Slurpee’s which soothed my stomach. And so this continued for 9 months until our son was born by C-Section on November 5, 1999.

All was well with the world as I cared for my new baby. I experienced the normal fatigue that comes with being up all night and also some post partum blues which I attribute to the c-section and the lack of the transition your body goes through in preparing for labor and delivery. He was a beautiful baby and I adored him. My life would forever be different. Little did I know just how different my life was about to become.

One week before my postpartum checkup I contacted my OB/GYN to tell him that I was experiencing some rectal bleeding. He instructed me to come to his office so he could check me out. He was being cautious because my father had died in 1997 from colon cancer as did his mother (my grandmother) in 1998. He did an examination of me and said that he suspected it was a fissure but to be safe he was sending me to a gastroenterologist. This was now the first week in December 1999.

Within a few days I was seen by the gastroenterologist. He first did a preliminary exam which included a lymphatic check along with my thyroid. This doctor asked me if I was aware that I had a cyst on my thyroid. I told him “No” but that my doctor had mentioned 9 months prior that my thyroid was swollen but had not told me to do anything about it. He told me I should have it checked. So I mentioned that my 6 week post partum was the following week and I would mention it to my doctor then. I was elated to learn that there was nothing wrong with me after this doctor did his full exam only to find that it was hemorrhoids related to pregnancy.

The following week I went to my 6 week postpartum. My son traveled with me to my doctors appointments. He was such a good baby that it made it easy. Little did I know that I would be carting him to many more appointments. I asked my OB/GYN about the lump on my thyroid and he checked it and agreed that there was something there and we should check it out. He ran standard labs including a TSH, FT4 & T4. All of which were normal – or should I say “in the range”. He ordered an ultrasound which was performed on 12/29/99. It showed that I had a multi-nodular cyst measuring 3.9 x 2.8 x 2.6 cm.