I continued to struggle with fatigue after the 3rd round of RAI in May. It was now December 2005 and I was tiring of the continued fight to regain my life. It seemed that no matter what I did or how many vitamins I took or what changes in lifestyle I made I couldn't get on top of it.
My naturopathic doctor suggested that I may feel better on Armour Thyroid medication. I had been on Synthroid for years and had bounced up and down on the dosages. There seemed to be no good dose. I began my quest to find a doctor that would prescribe it. This proved to be no easy feat. I found a Yahoo e-mail group that discussed Armour thyroid and how it had helped them to feel worlds better than when using synthetics. I was interested. I began asking questions and within a very short period of time I decided that I had to get on Armour no matter what it took. I needed to try something different.
I found a DO in a city near my home that practiced integrative medicine. I had decided that instead of a mammogram I would do a thermography and not have the added issue of more radiation – no matter how small they tell you it is. I didn’t want any more. So on January 16, 2006 I visited this new doctor. He was nice and spent time with me reviewing my medical history. He asked why I was visiting him that day. I told him that I wanted to get a thermography because I had previously had 3 mammograms for a spot on my right breast that was being watched. I also told him that I had been diagnosed with thyroid cancer and had been on a synthetic thyroid hormone for years and never felt well. I wanted to switch to a natural thyroid hormone to see if it would help. He agreed that this would be a good thing to do. He asked if I was on iodine and I said “no”. I didn’t understand why this was important and didn’t ask. I was to learn more about this just a few months later. We did a quick calculation and decided to start my dosage out on 2 grains of Armour. I had been on .150 mgs of Synthroid.
As part of my office visit he did a physical breast exam. He mentioned to me that I had 3 fibrous masses in my right breast. This did not make me happy. What else would I be inflicted with I thought. I decided that I would talk to my ND about this the next time I saw him and find out what he thought. After the exam I was taken to a room for the thermography. This would prove to be quite a new adventure. I was instructed to remove my top and then told that I must stand with my hands on my hips so my arms were away from my body for 10 mins. This would be a treat I thought. I should have brought some music. So there I stood. Luckily I had brought a book so I looked at that while waiting. The nurse returned after 10 minutes and told me to stand on a spot on the floor. She pointed a camera at my chest and proceeded to take images of my chest. After taking a few images she took me to the back room and ran the faucet with cold water. I was instructed to place my hands in the cold water for several minutes. This forces the blood to move toward the core of the body. After doing this I was taken back to the room with the camera and the nurse took several more images. When we were done I could get dressed again. The images would be sent to a company in Detroit that reviews and reports on the results. I paid for my visit and left. On the way home I stopped at Walgreen's to pick up my first prescription of Armour.
The following I entered my kitchen as I normally did. I picked up the bottle of Armour and began to think about what taking it would mean to me. I had been told for years that taking this drug would make my cancer come back. Each time I asked the doctors why I could not have it I was told that it would not keep me suppressed. This is very important to thyroid cancer patients. TSH is the hormone that feeds the cancer. I remember taking the pill into my mouth and thinking “Well here we go”. At this point I had little to loose. If things started to go wrong I could always go off the medication and take the Synthroid again. I knew I didn’t feel well. After all the definition of insanity is doing the same things over and over and expecting different results. I was definitely at that point.
Wednesday, April 04, 2007
Thyroid Cancer - Consult with the Endocrinologist at Univ of Michigan
My appointment with the endocrinologist was set for September 19, 2005 at 2 pm. It was a woman and from what I had read she had a lot of credentials. She seemed to be well thought of so once again I had high hopes that I would finally get some answers as to while I continued to have high Tg after 3 rounds of radioactive iodine. Since I had reached my maximum lifetime dose of RAI I was also looking to line up a team of "experts" just in case I had a recurrence. My Tg had been 8 at my August appointment but you never know.
My mother agreed to make the trip with me on the day of my appointment. That was nice because it was a 2 hour drive to the University Medical Center building. It's nice to have another set of eyes to help you find your way as well not to mention the moral support. I went armed with my medical records in a 3 ring binder and my nuclear medicine scans from each RAI treatment.
I met with Dr. D and she was very nice. She seemed interested in my condition and listened to what had transpired through my treatment. She did a physical neck check and we talked for about an hour & 1/2. At one point during my appointment she left to take a call. She was gone for about 1/2 hour. Now I felt that was incredibly rude! She appologized when she came back but still. I made an appointment to see her during that time. After much discussion she told me that she would review the records I had brought and would issue her opinion in 1 week. I thanked her and my mom & I left.
On the drive home my mom & I talked about what she had said and in some ways we had learned a few things but in many ways it was the same thing I had been hearing from the last two endocrinologists I had been seeing. I wondered if there were any answers. So I continued to work with my naturopath and kept my appointment for January with my current Endo.
After weeks had passed I received an envelope in the mail from Dr. D at the Univ of MI. It was 5 weeks past the promised date. By this point I had decided that I would not be seeing her for anything further. I had called on two occasions during the week time asking about the status and each time was told it would come the next week. I was not impressed.
I tore the envelope open to see what had been written on the 3 pages of Out-Patient Notes. The first page & a half described my treatment history. The next 3 /4 of a page was a description of my current health status at the appointment and what vitamins I was taking. This was a major disappointment. I knew all this information and now I had gotten 2 1/4 pages describing my life. The final 1/3 of the last page of the document was the following:
My impression at this time is that Stephanie B. has:
1. Iatrogenic hypothyroidism
2. Thyroid cancer, papillary (1.8 cm) with nymph node involvement
3. Status post thyroidectomy x2
4. Status post radioactive iodine ablation with a total of -300 mCi per day of radioactive iodine.
We had a very long discussion regarding her care. The patient requested that I review her chart, which took me some time to complete, and I have done this, but it is still unclear whether her intention is to follow up at this institution with her thyroid or just have another opinion regarding her thyroid gland treatment.
She had quite a bit of radioactive iodine ablation and the risk of side effects/toxicity from radiation therapy increases with repeated administration.
What remains unclear is why she has persistent thyroglobulin levels, despite a fairly high dose of radioactive iodine as well as surgery. Despite these therapies, she continues to have measurable amount of thyroglobulins. We discussed this issue.
At this time, if indeed she does intent to follow up in the clinic here, I would recommend referral to the Nuclear Medicine Division where they administer radioactive iodine and complete further therapy. She may benefit from other imaging modality such as a thyroid ultrasound, CT/MRI of the neck or PET scans. In the interim, she should maintain a suppressed TSH.
So there you have it. Again no one knows why this continues to happen but they are all too happy to run more nuclear scans on me. No thank you. It felt like a wasted trip. At this point I did not know now much this visit would cost. I was told anywhere from $350 - 400. They also told me that my insurance would not cover it because it was out of network. It turned out that it was in my network and I paid $15.
My mother agreed to make the trip with me on the day of my appointment. That was nice because it was a 2 hour drive to the University Medical Center building. It's nice to have another set of eyes to help you find your way as well not to mention the moral support. I went armed with my medical records in a 3 ring binder and my nuclear medicine scans from each RAI treatment.
I met with Dr. D and she was very nice. She seemed interested in my condition and listened to what had transpired through my treatment. She did a physical neck check and we talked for about an hour & 1/2. At one point during my appointment she left to take a call. She was gone for about 1/2 hour. Now I felt that was incredibly rude! She appologized when she came back but still. I made an appointment to see her during that time. After much discussion she told me that she would review the records I had brought and would issue her opinion in 1 week. I thanked her and my mom & I left.
On the drive home my mom & I talked about what she had said and in some ways we had learned a few things but in many ways it was the same thing I had been hearing from the last two endocrinologists I had been seeing. I wondered if there were any answers. So I continued to work with my naturopath and kept my appointment for January with my current Endo.
After weeks had passed I received an envelope in the mail from Dr. D at the Univ of MI. It was 5 weeks past the promised date. By this point I had decided that I would not be seeing her for anything further. I had called on two occasions during the week time asking about the status and each time was told it would come the next week. I was not impressed.
I tore the envelope open to see what had been written on the 3 pages of Out-Patient Notes. The first page & a half described my treatment history. The next 3 /4 of a page was a description of my current health status at the appointment and what vitamins I was taking. This was a major disappointment. I knew all this information and now I had gotten 2 1/4 pages describing my life. The final 1/3 of the last page of the document was the following:
My impression at this time is that Stephanie B. has:
1. Iatrogenic hypothyroidism
2. Thyroid cancer, papillary (1.8 cm) with nymph node involvement
3. Status post thyroidectomy x2
4. Status post radioactive iodine ablation with a total of -300 mCi per day of radioactive iodine.
We had a very long discussion regarding her care. The patient requested that I review her chart, which took me some time to complete, and I have done this, but it is still unclear whether her intention is to follow up at this institution with her thyroid or just have another opinion regarding her thyroid gland treatment.
She had quite a bit of radioactive iodine ablation and the risk of side effects/toxicity from radiation therapy increases with repeated administration.
What remains unclear is why she has persistent thyroglobulin levels, despite a fairly high dose of radioactive iodine as well as surgery. Despite these therapies, she continues to have measurable amount of thyroglobulins. We discussed this issue.
At this time, if indeed she does intent to follow up in the clinic here, I would recommend referral to the Nuclear Medicine Division where they administer radioactive iodine and complete further therapy. She may benefit from other imaging modality such as a thyroid ultrasound, CT/MRI of the neck or PET scans. In the interim, she should maintain a suppressed TSH.
So there you have it. Again no one knows why this continues to happen but they are all too happy to run more nuclear scans on me. No thank you. It felt like a wasted trip. At this point I did not know now much this visit would cost. I was told anywhere from $350 - 400. They also told me that my insurance would not cover it because it was out of network. It turned out that it was in my network and I paid $15.
Sunday, March 25, 2007
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
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
Tuesday, March 20, 2007
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.
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.
Sunday, March 18, 2007
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.
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.
Saturday, March 17, 2007
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.
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.
Friday, March 16, 2007
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.
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.
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