So the title pretty much sums it up. While my 1 year cancer free date has come and gone I haven't really gotten confirmation of it yet. The medicine I need, Thyrogen, to cause me to be hypothyroid without all the yucky symptoms to do my cancer check bloodwork is once again on back order and has been for months. Thankfully my doctor did not take the drug company's advice to just have her patients go off their medicine for 4 weeks as opposed to waiting for the medicine. She refuses to make her patients go through that...she realizes that it isn't pleasant and it isn't necessary to go through withdrawal. Much better than my previous doctor. The nurse called me today so hopefully it will come available in mid June and she thinks I'll be one of the first to get it since I've been waiting a little while. Of course if it is available then I will be on a mission trip at that time so it is even more waiting. If there is one thing I do NOT do well it is waiting. While I have no anxiety about the cancer having returned I just want this one final step to be behind me so I can go into a "normal" bloodwork pattern of every 6 months and nothing more.
The much happening right now includes a mission trip to Guatemala that I'm blessed to be able to participate in this year. I am so excited for this. Last year with medical bills and my medicine still not being correct I just wasn't physically able to go but this year is a different story. My medicine is at the correct level and praise God all our medical bills are paid off along with our credit cards. We will be building 2 houses, doing a women's bible study and 3 VBS sessions. In addition to this we get a free day where we will be hiking up a volcano! How awesome is that! Although Eric is freaked out that his mommy is hiking up a volcano because there is hot lava in it. Poor kid may be traumatized for life! At least I know he loves me! :)
While there is this awesome thing to look foward to I do have a set back that has been occuring for a year now and has just progressively gotten worse. I now have no day or hour where I do not have pain in my hips (not good for hiking up a volcano!). It is so odd and discouraging at times. One of my favorite past times is running and it is becoming more and more difficult to do it. It didn't use to hurt when I ran but the past 2 runs have been hard with hip pain. What is even more discouraging about it is that I handle pain well (I have a high tolerance for it) so for it affect my daily life like this is bothersome to me. I hate that it affects my mood and ability to really play with my kids like I would like to. It is bad when I sit or stand to long and forget laying on my side which makes sleeping almost impossible. I've been treated for a muscle tear and bursitis and told to rest it. Those treatments have not worked. The last rest period is when it became evident that something more is going on because the pain never once let up. I have been tested for rheumatoid arthristis which was negative thankfully. I had an xray last year that ruled out a stress fracture. I am going to try a foam roller to see if that type of deep massage will help aid in healing as it could be IT band pain but the way it started off and on in my right hip last year to being in both hips all the time leads me to believe it is not that. Someone suggested osteoarthritis to me which is something I will be bringing up to my doctor. I thought I was to young for that at 31 but I guess you never know. If my cancer journey taught me anything it is the fact that I don't usually fall into those usual statistical groups.
This past year has been quite a journey with many ups and downs. I am thankful for all this year has taught me! While I would rather not have had cancer and I would rather not be in pain constantly it has and still is teaching me to rely on others and mainly to rely on God for help. As always songs are the best way for me to connect with God and feel His presence and the best way for me to be encouraged. As I write this post the song "While I'm Waiting" by John Waller is playing on my iPod. I am still amazed at how the perfect song always comes on at the exact moment that I need it. I will move ahead bold and confident and I will take every step in obedience to Him while I am waiting for His perfect timing. I will serve Him while I'm waiting and I will worship Him while I'm waiting.
Tuesday, June 7, 2011
Sunday, November 28, 2010
6 months (just a litte more really) here I come!
Will warn you up front that I'm exhausted but can't sleep so this post will probably make very little sense! LOL! :)
All I have to say about the Ragnar Relay that I did this month with 11 other people is that it was extremely fun and painful all at the same time! LOL! I ran just over 15 miles of the relay (not all at once). Pretty happy about that considering I started running 6 weeks before the relay. There was definitely a feeling of accomplishment in doing it even if I wasn't able to run the full 17.6 miles I was supposed to. It was originally 13.8 miles and then someone got injured so I was bumped up but I was injured as well and had to ask for some help on my last leg. I loved the team aspect of it and getting to hang out with friends and make new ones as well. It will definitely be something I do again and I think Brian is going to do it next time as well. Yep, I'm addicted to running now and I'm getting others addicted to my madness as well. :) On a health note of it, I do have a damaged hip muscle (injured months ago when working out at the gym...just never healed) and have to stop running for about 2 weeks. We are hoping that will be all it takes to heal the muscle. If not then it is off to physical therapy but I'm already starting to feel somewhat better after the first few days of rest.
This week is going to be very eventful on the medical front for me. It is my 6 month checkup. On Monday & Tuesday I go for Thyrogen injections, Wednesday I get blood work and get to take a very small dose of radioactive iodine (completely safe levels this time to be with the kiddos and others), Thursday if my off day and finally Friday I have my whole body scan and more blood work. The whole body scan takes about 45 minutes to an hour. I have a hard time just laying still for that long if I can't nap during the process so this should be fun.
Please be praying for my nerves. I've had 2 surgeries this year where I have IV's both times and numerous blood draws and that stuff doesn't bother me but mention the word shot/injection and I start freaking out. I'm really not that worried about the actual results...just getting the injections! Haha! Although I am thankful I just have to get the injections instead of coming off my Synthroid and going hypothyroid again. That was no fun! I feel at peace about the results. I will find out about 2 weeks after the scan what the results are. If all is clear then I get to do another scan a year from now.
I cannot believe that just over 6 months have gone by! I was diagnosed on March 1st with cancer, had 2 surgeries in April, radioactive iodine therapy in May, finally got on a good dose of medicine in October and now I'm back to living a "normal" life in November.
I love the saying that "life is what happens while you are making plans." It is so true. I obviously did not plan this year in my journey but it has taken me places I never would have realized could be so wonderful if this hadn't happened. I'm way more appreciative of my family, friends and health then I have ever been. I am truly blessed!
All I have to say about the Ragnar Relay that I did this month with 11 other people is that it was extremely fun and painful all at the same time! LOL! I ran just over 15 miles of the relay (not all at once). Pretty happy about that considering I started running 6 weeks before the relay. There was definitely a feeling of accomplishment in doing it even if I wasn't able to run the full 17.6 miles I was supposed to. It was originally 13.8 miles and then someone got injured so I was bumped up but I was injured as well and had to ask for some help on my last leg. I loved the team aspect of it and getting to hang out with friends and make new ones as well. It will definitely be something I do again and I think Brian is going to do it next time as well. Yep, I'm addicted to running now and I'm getting others addicted to my madness as well. :) On a health note of it, I do have a damaged hip muscle (injured months ago when working out at the gym...just never healed) and have to stop running for about 2 weeks. We are hoping that will be all it takes to heal the muscle. If not then it is off to physical therapy but I'm already starting to feel somewhat better after the first few days of rest.
This week is going to be very eventful on the medical front for me. It is my 6 month checkup. On Monday & Tuesday I go for Thyrogen injections, Wednesday I get blood work and get to take a very small dose of radioactive iodine (completely safe levels this time to be with the kiddos and others), Thursday if my off day and finally Friday I have my whole body scan and more blood work. The whole body scan takes about 45 minutes to an hour. I have a hard time just laying still for that long if I can't nap during the process so this should be fun.
Please be praying for my nerves. I've had 2 surgeries this year where I have IV's both times and numerous blood draws and that stuff doesn't bother me but mention the word shot/injection and I start freaking out. I'm really not that worried about the actual results...just getting the injections! Haha! Although I am thankful I just have to get the injections instead of coming off my Synthroid and going hypothyroid again. That was no fun! I feel at peace about the results. I will find out about 2 weeks after the scan what the results are. If all is clear then I get to do another scan a year from now.
I cannot believe that just over 6 months have gone by! I was diagnosed on March 1st with cancer, had 2 surgeries in April, radioactive iodine therapy in May, finally got on a good dose of medicine in October and now I'm back to living a "normal" life in November.
I love the saying that "life is what happens while you are making plans." It is so true. I obviously did not plan this year in my journey but it has taken me places I never would have realized could be so wonderful if this hadn't happened. I'm way more appreciative of my family, friends and health then I have ever been. I am truly blessed!
Saturday, October 9, 2010
A new adventure...
Wow...it's been awhile since I posted on here. The last few months have been a whirlwind but I couldn't really tell you what we have been doing besides the normal busyness of life with 2 little kids. News on the thyroid cancer front is good! I have changed endocrinologists and absolutely love my new one! She is a super super doctor! Very knowledgeable and great personality. Her staff is excellent too! My levels are still not right but we are getting closer thankfully.
I do have a new venture to inform people of. I have signed up to do the Ragnar Relay on November 19-20th! Just 7 months after a cancer diagnosis, 2 surgeries, and medical drama I have joined a bunch of crazies (I mean this very lovelingly by the way) from my church family to run a 200 mile relay across the state of Florida! Yikes! What was I thinking you ask? Well...we are doing this to raise awareness for Love146 ministries. Love146 ministries is attacking child sex trafficking and exploitation in 2 areas...prevention (stopping it completely) and after care for those that are rescued. For some reason God has placed this ministry firmly on my heart. I do not have little girls but I do have 2 little boys and some of these kids that are sold into sex slavery are no more than Eric's age (4 years old). It just breaks my heart and when God breaks your heart about something you need to sit up and listen. I invite all of you to check out their website which is http://www.love146.org/. It will be a life changing visit for sure.
During this venture which just started about 2 weeks ago for me I have happened upon some obstacles. When doing anything to possibly glorify God isn't that always the case? After my surgery I have had pain in my hips regularly. With thyroid disorders your joints can be affected and they just aren't what they would be normally. I was finding that when I would start working out or ramping up my workouts that my right hip would have horrible pain in it for a few days and then go away. I'm talking hard to walk and get out of bed pain. I was very scared that it could be the onset of arthritis of the rheumatoid kind as happens with some thyroid patients. When you've had cancer of any kind you can get a little paranoid I think.
After starting my running adventure I developed the pain again and this time it wouldn't go away. Off to my new primary care doctor I went. On a side note...I love him too! Fabulous doctor! Anyways...he ordered blood tests and xrays. The possible scenarios were anything from stress fracture in my hip and rheumatoid arthritis to tendonitis or bursitis. The day after my xrays and blood work was done he called me to let me know everything was normal and that I had just been living with a bad case of tendonitis or bursitis for the past few months. My thyroid levels were off which could cause the increase in pain and length of it as well. This was a major relief because I was allowed to start training for Ragnar again. He put me on 4 days of steroids and gave me prescription motrin to ease the pain. I am feeling better but can tell it is still there. I am hopefully going to see a massage therapist soon to see if she can help as well. I was able to run 2 miles today in about 21 minutes which is huge for me! My legs in the relay are 3.5 miles, 3.7 miles and 6.5 miles. As of now I'm just freaking out about the 6.5 mile leg...pray for me please! LOL!
Anyways...that is the brief update to my follow up cancer journey. I go back in November for another whole body scan. Thankfully I will not be allowed off my thyroid meds (my new doctor was in shock that it took so long for them to get me on it after my surgery) and will just be receiving thyrogen injections and a very small dose of radioactive iodine to do the scan. I am not thinking they will find anything of concern. My last CT scan of my lungs came back stable so that is wonderful news as well! That means I still have the spot but it hasn't grown. This is probably a result of an old infection. So all in all a very good update for me! I'm sure there will be more ups and downs along the way but I am thankful that I have my family, friends and even more importantly my God who is never shaken on my side! I'm going to end this post with a couple of scriptures that have been on my heart lately.
"Have you never heard? Have you never understood? The Lord is the everlasting God, the Creator of all the earth. He never grows weak or weary. No one can measure the depths of his understanding. He gives power to the weak and strength to the powerless. Even youths will become weak and tired, and young men will fall in exhaustion. But those who trust in the Lord will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint." Isaiah 40:28-31 (This passage was open in the Bible at that the hospital where my mom passed away about 2 years ago this November...it has always been special to me. My mom found new strength in being with her Lord and Savior...I am finding new strength in trusting in Him completely.)
"We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love." Romans 5:3-5
I do have a new venture to inform people of. I have signed up to do the Ragnar Relay on November 19-20th! Just 7 months after a cancer diagnosis, 2 surgeries, and medical drama I have joined a bunch of crazies (I mean this very lovelingly by the way) from my church family to run a 200 mile relay across the state of Florida! Yikes! What was I thinking you ask? Well...we are doing this to raise awareness for Love146 ministries. Love146 ministries is attacking child sex trafficking and exploitation in 2 areas...prevention (stopping it completely) and after care for those that are rescued. For some reason God has placed this ministry firmly on my heart. I do not have little girls but I do have 2 little boys and some of these kids that are sold into sex slavery are no more than Eric's age (4 years old). It just breaks my heart and when God breaks your heart about something you need to sit up and listen. I invite all of you to check out their website which is http://www.love146.org/. It will be a life changing visit for sure.
During this venture which just started about 2 weeks ago for me I have happened upon some obstacles. When doing anything to possibly glorify God isn't that always the case? After my surgery I have had pain in my hips regularly. With thyroid disorders your joints can be affected and they just aren't what they would be normally. I was finding that when I would start working out or ramping up my workouts that my right hip would have horrible pain in it for a few days and then go away. I'm talking hard to walk and get out of bed pain. I was very scared that it could be the onset of arthritis of the rheumatoid kind as happens with some thyroid patients. When you've had cancer of any kind you can get a little paranoid I think.
After starting my running adventure I developed the pain again and this time it wouldn't go away. Off to my new primary care doctor I went. On a side note...I love him too! Fabulous doctor! Anyways...he ordered blood tests and xrays. The possible scenarios were anything from stress fracture in my hip and rheumatoid arthritis to tendonitis or bursitis. The day after my xrays and blood work was done he called me to let me know everything was normal and that I had just been living with a bad case of tendonitis or bursitis for the past few months. My thyroid levels were off which could cause the increase in pain and length of it as well. This was a major relief because I was allowed to start training for Ragnar again. He put me on 4 days of steroids and gave me prescription motrin to ease the pain. I am feeling better but can tell it is still there. I am hopefully going to see a massage therapist soon to see if she can help as well. I was able to run 2 miles today in about 21 minutes which is huge for me! My legs in the relay are 3.5 miles, 3.7 miles and 6.5 miles. As of now I'm just freaking out about the 6.5 mile leg...pray for me please! LOL!
Anyways...that is the brief update to my follow up cancer journey. I go back in November for another whole body scan. Thankfully I will not be allowed off my thyroid meds (my new doctor was in shock that it took so long for them to get me on it after my surgery) and will just be receiving thyrogen injections and a very small dose of radioactive iodine to do the scan. I am not thinking they will find anything of concern. My last CT scan of my lungs came back stable so that is wonderful news as well! That means I still have the spot but it hasn't grown. This is probably a result of an old infection. So all in all a very good update for me! I'm sure there will be more ups and downs along the way but I am thankful that I have my family, friends and even more importantly my God who is never shaken on my side! I'm going to end this post with a couple of scriptures that have been on my heart lately.
"Have you never heard? Have you never understood? The Lord is the everlasting God, the Creator of all the earth. He never grows weak or weary. No one can measure the depths of his understanding. He gives power to the weak and strength to the powerless. Even youths will become weak and tired, and young men will fall in exhaustion. But those who trust in the Lord will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint." Isaiah 40:28-31 (This passage was open in the Bible at that the hospital where my mom passed away about 2 years ago this November...it has always been special to me. My mom found new strength in being with her Lord and Savior...I am finding new strength in trusting in Him completely.)
"We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love." Romans 5:3-5
Tuesday, June 29, 2010
Update
I thought I should probably get on here an update my progress so far. Following all the crazy dosage problems I finally have had some bloodwork done as of last week. I do not go back to the doctor until July 7th but did pick up my results from the lab today. Results are in showing I am now hyperthyroid even on the 125mcg dose. I have no idea what the doctor will do when I go for my appointment. The next lower dose if the 112mcg I was on that had my at a hypothyroid level. Ugh. I do know that I cannot stay on this dose even though I do feel better than I did because I am not where I need to be. Last night it finally came to me that I may be on the hyper end of the spectrum after putting all the symptoms together (edgy, nervous, hair falling out, tiredness, hip pain, high resting heart rate, increased appetite, hard time sleeping) that I have been having for the past week.
I'm just praying that the 112mcg didn't have enough time to really work in my system (or that I was actually hyper on that dose and didn't know it)...either that or he can supplement me with another medicine as well. Not sure if that will help though as my T3 levels were normal. It is just my T4 (too high) and TSH (too low) levels that are off. I find it quite humorous that I went from a TSH of 123 to one of .12 now. Talk about a drastic swing in hormone levels. Just imagine being my poor husband and kids that have to put up with me! LOL!
After dealing with all of this I have been ready for some good news and have gotten it as of late. My whole body scan came back negative for thyroid cancer being anywhere else in my body! I found that one out early when I visited my pulmonologist a couple of weeks ago. Also my bloodwork shows my thyroglobulin levels being less than .2 which indicates there is no cancer left! Yay!
I do not want to be a negative nellie so I will say that I have been feeling so much better even with dealing with the hyper symptoms I have had as of late. Brian and I have been doing P90X which is a very intense workout program. Just a month ago I didn't think that would be possible and here we are 2 1/2 weeks into it and I'm getting back into the best shape I've been in for a long time. I am also able to go back to the gym and take my favorite classes again (Zumba & TRX). All in all I am doing sooooo much better and I'm so very thankful I'm able to enjoy my family again. I know that my journey is not over but I can see the light at the end of the tunnel now.
Thanks again to all those that helped us and supported us through everything. We are so very thankful and grateful to our wonderful friends and family!
I'm just praying that the 112mcg didn't have enough time to really work in my system (or that I was actually hyper on that dose and didn't know it)...either that or he can supplement me with another medicine as well. Not sure if that will help though as my T3 levels were normal. It is just my T4 (too high) and TSH (too low) levels that are off. I find it quite humorous that I went from a TSH of 123 to one of .12 now. Talk about a drastic swing in hormone levels. Just imagine being my poor husband and kids that have to put up with me! LOL!
After dealing with all of this I have been ready for some good news and have gotten it as of late. My whole body scan came back negative for thyroid cancer being anywhere else in my body! I found that one out early when I visited my pulmonologist a couple of weeks ago. Also my bloodwork shows my thyroglobulin levels being less than .2 which indicates there is no cancer left! Yay!
I do not want to be a negative nellie so I will say that I have been feeling so much better even with dealing with the hyper symptoms I have had as of late. Brian and I have been doing P90X which is a very intense workout program. Just a month ago I didn't think that would be possible and here we are 2 1/2 weeks into it and I'm getting back into the best shape I've been in for a long time. I am also able to go back to the gym and take my favorite classes again (Zumba & TRX). All in all I am doing sooooo much better and I'm so very thankful I'm able to enjoy my family again. I know that my journey is not over but I can see the light at the end of the tunnel now.
Thanks again to all those that helped us and supported us through everything. We are so very thankful and grateful to our wonderful friends and family!
Saturday, May 29, 2010
Follow up
Things have been a little crazy since I had my radioactive iodine treatment. Guess I should update on here what has been going on. This will probably be long since it has been almost a month since my last post.
The actual radioactive iodine treatment was pretty anticlimactic to tell the truth. It comes in the form of a small pill. You swallow it and that is it. All the hoopla we went through just for me to swallow a tiny pill. I did wear my radioactive shirt to take my pill though. The people at the radiology center just LOVED it. They were all very impressed with my friends for being so supportive. :)
After taking the pill I immediately left the building and went to my beach house getaway for the weekend. I am so thankful I stayed away longer than what was originally told to us. One of our friends had a geiger counter (measures radiation) that they let us borrow. I was definitely not safe to be around 2 days later, at least for the kids. I spent 3 nights by the beach and the 4th night away Brian booked me a suite with a jacuzzi tub at a local hotel. It was my Mother's Day present. I was safe to be near adults just not kids so it was fine for me to be at the hotel at that point. I have to say that being in isolation was pretty hard. I like to be around people even though I'm quiet so being completely away from anyone for that many days was rough. I got to catch up on my reading and movie watching though. :)
The day after swallowing the little pill that would kill any remaining thyroid cancer in my body I was able to start on my Synthroid. Let me tell you that was exciting because I knew finally I would start feeling better...or so we thought. I did feel better for about 4-5 days. I wasn't back to normal so we knew it wasn't the right dose but I was feeling better. After those 4-5 days though my symptoms starting worsening instead of leveling off. We finally called my doctor on May 18th to see if this was normal. We wanted to get blood work done so we could get my dose upped if need be. After much persistence again we finally got a hold of someone. However, they just upped my dose without performing any blood work. I was a little leery but figured they know what they are doing. I went from 112mcg to 150mcg, skipping 2 doses in between there.
I started taking my new dose on May 21st and by that Sunday, the 23rd, I was starting to feel funny. I thought I was catching a virus that Eric had that weekend because I was running a fever. By Sunday afternoon though my fever was gone which was odd. On the 24th I started getting pretty tired again and lots of body aches especially in my hips and legs again. I thought for sure that my dose was to low once again which freaked me out because there are only 3 higher doses they can prescribe me. The next day I felt a little better. On Wednesday the 26th I was hit with a horrible migraine and extreme fatigue. It was so bad I cancelled the boys swim lessons and called a friend to come watch the boys because I could not get out of bed. The next day I still had a headache but it wasn't a migraine thankfully. I also started running a fever again and could feel my anxiety levels creeping up. By now I'm getting a little frustrated. Yesterday is when the most tell tale symptoms hit and when we really figured out the most likely problem. I woke up extremely fatigued and sweating. It is rare for me to be hot. I still took Eric to a field trip though and had a great time with friends. By the time we got home though my heart was racing and I was having a hard time breathing. That is when we pulled out the instructions that come with my medicine. Sure enough I have been having a ton of symptoms of being over medicated or overdosing. The racing heart is what really gave it away to me as that is a big sign of hyperthyroidism. By 3pm it had eased up but then my hip, leg and knee pain was off the charts. Then that evening my heart started racing again and I had to go to sleep at 6:30pm I was so fatigued (another sign of hyperthyroid...funny since it is a sign of hypo as well). I finally started feeling better by 8pm. Also I lost 2 lbs in less than 24 hours yesterday which is a big sign of being over medicated as well. Some weight loss is normal but rapid weight loss is not.
Of course my doctor's office is closed on Fridays and won't be open until Tuesday. We also have no way of getting a hold of him after hours which is just not right in my opinion. The only number they leave you with is 911 in case of an emergency. Very helpful if I was dying but I wasn't. Thankfully I have a new doctor lined up but can't get in until August. I am just praying she gets some cancellations so I can go in earlier. Since we couldn't get a hold of my doctor we just decided to cut my dose back. He had given me some samples of 125mcg to take so I took one of those this morning. I am feeling so much better it is unbelievable. I still have a tiny headache and I'm a little tired but nothing else is wrong. My fever is gone, heart rate is normal and my leg pain is gone. We will see how the next few days progress as it seems to be about 4-5 days into a new dose that we can tell what is going to happen.
I found out after all of this happens that a doctor should never mess with your dosage until you have lab work done and they probably shouldn't up your dosage by so much at one time. All he had to do was order blood work and then up my dose by one increment and see what happened and we would have avoided all of this. Synthyroid is a type of medicine that the proper dose is very close to the toxic dose so upping my medicine by so much was just not responsible in my opinion.
So now we just wait and see what to do next. I had my whole body scan on the 20th and will find out the results at my next appointment which isn't until July 7th. The body scan will tell us where the iodine was soaked up in my body which tells us where there was additional thyroid tissue which potentially could have contained cancer. This tissue will have been killed off by the iodine. My blood work will be done the last week of June and we will be watching my Thyroglobulin levels closely. If they are under a certain number then I am cancer free but if they are higher than normal then we may have to undergo another round of radioactive iodine. That will be the last you hear me mention that as I refuse to go down that road of thinking. :)
Overall I am so happy to have most of this behind me. While the journey after my iodine treatment is not what I would have wished for it has taught me some very important lessons on knowing your own body and trusting yourself to know when something just isn't right. On June 25th we are having a Thank You party for all those people that pitched in and helped us or supported us in some way during all this time. I am so looking forward to this. To be able to serve those (even in this small way) that have served me and my family is such a privilege. Plus I love a good party! :)
The actual radioactive iodine treatment was pretty anticlimactic to tell the truth. It comes in the form of a small pill. You swallow it and that is it. All the hoopla we went through just for me to swallow a tiny pill. I did wear my radioactive shirt to take my pill though. The people at the radiology center just LOVED it. They were all very impressed with my friends for being so supportive. :)
After taking the pill I immediately left the building and went to my beach house getaway for the weekend. I am so thankful I stayed away longer than what was originally told to us. One of our friends had a geiger counter (measures radiation) that they let us borrow. I was definitely not safe to be around 2 days later, at least for the kids. I spent 3 nights by the beach and the 4th night away Brian booked me a suite with a jacuzzi tub at a local hotel. It was my Mother's Day present. I was safe to be near adults just not kids so it was fine for me to be at the hotel at that point. I have to say that being in isolation was pretty hard. I like to be around people even though I'm quiet so being completely away from anyone for that many days was rough. I got to catch up on my reading and movie watching though. :)
The day after swallowing the little pill that would kill any remaining thyroid cancer in my body I was able to start on my Synthroid. Let me tell you that was exciting because I knew finally I would start feeling better...or so we thought. I did feel better for about 4-5 days. I wasn't back to normal so we knew it wasn't the right dose but I was feeling better. After those 4-5 days though my symptoms starting worsening instead of leveling off. We finally called my doctor on May 18th to see if this was normal. We wanted to get blood work done so we could get my dose upped if need be. After much persistence again we finally got a hold of someone. However, they just upped my dose without performing any blood work. I was a little leery but figured they know what they are doing. I went from 112mcg to 150mcg, skipping 2 doses in between there.
I started taking my new dose on May 21st and by that Sunday, the 23rd, I was starting to feel funny. I thought I was catching a virus that Eric had that weekend because I was running a fever. By Sunday afternoon though my fever was gone which was odd. On the 24th I started getting pretty tired again and lots of body aches especially in my hips and legs again. I thought for sure that my dose was to low once again which freaked me out because there are only 3 higher doses they can prescribe me. The next day I felt a little better. On Wednesday the 26th I was hit with a horrible migraine and extreme fatigue. It was so bad I cancelled the boys swim lessons and called a friend to come watch the boys because I could not get out of bed. The next day I still had a headache but it wasn't a migraine thankfully. I also started running a fever again and could feel my anxiety levels creeping up. By now I'm getting a little frustrated. Yesterday is when the most tell tale symptoms hit and when we really figured out the most likely problem. I woke up extremely fatigued and sweating. It is rare for me to be hot. I still took Eric to a field trip though and had a great time with friends. By the time we got home though my heart was racing and I was having a hard time breathing. That is when we pulled out the instructions that come with my medicine. Sure enough I have been having a ton of symptoms of being over medicated or overdosing. The racing heart is what really gave it away to me as that is a big sign of hyperthyroidism. By 3pm it had eased up but then my hip, leg and knee pain was off the charts. Then that evening my heart started racing again and I had to go to sleep at 6:30pm I was so fatigued (another sign of hyperthyroid...funny since it is a sign of hypo as well). I finally started feeling better by 8pm. Also I lost 2 lbs in less than 24 hours yesterday which is a big sign of being over medicated as well. Some weight loss is normal but rapid weight loss is not.
Of course my doctor's office is closed on Fridays and won't be open until Tuesday. We also have no way of getting a hold of him after hours which is just not right in my opinion. The only number they leave you with is 911 in case of an emergency. Very helpful if I was dying but I wasn't. Thankfully I have a new doctor lined up but can't get in until August. I am just praying she gets some cancellations so I can go in earlier. Since we couldn't get a hold of my doctor we just decided to cut my dose back. He had given me some samples of 125mcg to take so I took one of those this morning. I am feeling so much better it is unbelievable. I still have a tiny headache and I'm a little tired but nothing else is wrong. My fever is gone, heart rate is normal and my leg pain is gone. We will see how the next few days progress as it seems to be about 4-5 days into a new dose that we can tell what is going to happen.
I found out after all of this happens that a doctor should never mess with your dosage until you have lab work done and they probably shouldn't up your dosage by so much at one time. All he had to do was order blood work and then up my dose by one increment and see what happened and we would have avoided all of this. Synthyroid is a type of medicine that the proper dose is very close to the toxic dose so upping my medicine by so much was just not responsible in my opinion.
So now we just wait and see what to do next. I had my whole body scan on the 20th and will find out the results at my next appointment which isn't until July 7th. The body scan will tell us where the iodine was soaked up in my body which tells us where there was additional thyroid tissue which potentially could have contained cancer. This tissue will have been killed off by the iodine. My blood work will be done the last week of June and we will be watching my Thyroglobulin levels closely. If they are under a certain number then I am cancer free but if they are higher than normal then we may have to undergo another round of radioactive iodine. That will be the last you hear me mention that as I refuse to go down that road of thinking. :)
Overall I am so happy to have most of this behind me. While the journey after my iodine treatment is not what I would have wished for it has taught me some very important lessons on knowing your own body and trusting yourself to know when something just isn't right. On June 25th we are having a Thank You party for all those people that pitched in and helped us or supported us in some way during all this time. I am so looking forward to this. To be able to serve those (even in this small way) that have served me and my family is such a privilege. Plus I love a good party! :)
Thursday, May 6, 2010
Treatment today!
Well hello everyone....today is the day! My radioactive iodine (RAI) treatment day! Yipee! While I have some qualms about swallowing a pill that comes in a 50lb lead box surrounding it to minimize the handlers exposure to radiation (LOL), I am looking forward to hopefully being done with my treatment after this. My RAI is at 2pm today in Daytona Beach. After that I will be off to a friend's vacant house that is just 2 blocks off the beach. This is going to be a rough isolation period. Haha! I will be away until Monday morning. I also get to start on my starting dosage of Synthroid 24 hours after treatment. After 4 weeks they will be upping my dosage to see how I handle it. We are hoping this will start to take affect within 24 hours. I also get to go off my low iodine diet 24 hours after my treatment. Brian is bringing me a big slice of cheese pizza and some garlic knots from Tony's Pizza in Flagler Beach. Yummy! :) About 14 days after treatment I will go in for a full body scan to see how everything worked. This will show if any thyroid tissue had spread through my body during this whole process and if so it will also show if there is any remaining that needs to be retreated. We just aren't going with that thought at all though. :)
I will be off my computer until Monday morning so if you need me for anything you can call Brian at the house and he can relay a message to me or you are welcome to call my cell phone.
Thanks again for everyone's love, support, prayers, help, meals, babysitting, errand running, gift cards, flowers, cards, housecleaning, etc. I could go on and on! The outpouring of love we have been shown has been overwhelming in such a wonderful way. God is good all the time. No matter what our situation He is there to meet us and walk us through it if we allow Him to. This past week I was able to get MercyMe's new album on iTunes. It is called The Generous Mr. Lovewell. There are 2 songs specifically that I love (the whole cd is awesome) and are so helpful to me during this time. If you want I highly recommend you checking the album out and the songs called Move and also Beautiful. Great great songs that will speak to your heart in times of need or discouragement.
I also uploaded a photo of myself in a shirt my friend's had made for me in honor of my RAI treatment. I am so wearing this today to my appointment! I also put the card they made for me up as well. They are a great group of gals for sure!
There are a few things I would love prayer for if you don't mind praying.
1. Complete healing...that this radioactive iodine will be soaked up by any remaining thyroid tissue in my body and that it will kill it off.
2. For my medicine to start working immediately so I can begin feeling better.
3. For any anxiety or fear that may creep in while I'm alone.
4. For Brian and the boys to have a fabulous time while I have to be away from them.
2. For my medicine to start working immediately so I can begin feeling better.
3. For any anxiety or fear that may creep in while I'm alone.
4. For Brian and the boys to have a fabulous time while I have to be away from them.
Wednesday, April 28, 2010
Validation thankfully
Went and had my blood drawn this morning. The girl that did it is a thyroid cancer survivor of 10 years. I met her last time I was at the lab. I told her the situation with my doctor's office putting me off and she told me to come back in 2 hours and she would have my results ready for me. She is my new favorite person. :) I go back and pick up my results which were only partially ready but had the number I needed thankfully. My doctor wanted my TSH level above 30 to do the radioactive iodine without my injections. Guess what...it was 123.74! While it is not good for it to be that high it certainly felt good to get some validation that I am not crazy and there is a reason I feel so bad all of a sudden. Normal TSH levels are supposed to be between .34 & 5.60. Some doctors even want it under 2 for it to be considered normal. I don't even want to think about how bad it is going to be next week or until I can get on my thyroid medication. Just imagine if I had waited 4 weeks to do my iodine treatment! The other test that was ready was my Free T4 levels. It was at less than .25 and normal is between .61 & 1.12.
I called the doctor's office with my results and told them they could call to get the report faxed to them because me telling them was obviously not good enough. I could hear the nurse in the background as the receptionist to repeat the number. Then I heard her say "it's how high!?" Yea lady...this is why you listen to your patients when they call and say they are feeling horrible. However, all that being said I never did get a phone call from my doctor today. The levels are really way high and way low when you look at the T4 and can cause some potentially dangerous complications for me but I have a feeling my doctor didn't even see the results. The receptionist was not to friendly when I called back at 4:30 today to check on the progress and she said the doctor hadn't signed off on them yet so they couldn't tell me anything. Whatever. They will be hearing from me in the morning for sure. Now don't freak out about the complications because I know what to look for and will immediately call for help if I need it. :)
I'm feeling okay today. Better than yesterday by far thankfully. My energy was horrible this morning but came back some this afternoon and evening. I only had one bout of pain today and that was short lived an in my shoulder instead of hip today. I've had some dizzy spells but not as many. My lack of focus had one bad time but came back fairly quickly thankfully. As I'm typing this I can feel the energy leaving my body though so I have a feeling an early bedtime for me will be in order. I had some friends over this evening to help clean which was wonderful. They did a great job and the kids all got to play together and have a fun evening. I started my low iodine diet today. After a rough morning with it (I didn't have anything in the house I could eat) I was able to go to the store and get some things I needed. I even made homemade peanut butter today. It is delicious! I may never buy jarred peanut butter again! :)
Oh get this...after having my blood drawn and going through all the runaround with my doctor's office about the injections which I don't even need now, CVS calls and tells me they need me to authorize delivery of the injections to my doctor's office for tomorrow or the next day. I just started laughing when I talked to the woman. She also informed me that it will be 100% covered by my insurance as we have met our deductible and out of pocket expense maximum for the year. What in the world was the hold up then...I'm guessing it had to do with my doctor's office. Whatever...at least it is all straightened out now.
Okay...I am seriously out of energy all of a sudden so I am going to have to stop this post for now. All in all I am happy that my levels show that I am indeed not crazy and this stuff is not in my head and we are not blowing things out of proportion. Now if I can just get my doctor to call me back so we can get my radioactive iodine scheduled all would be well.
I called the doctor's office with my results and told them they could call to get the report faxed to them because me telling them was obviously not good enough. I could hear the nurse in the background as the receptionist to repeat the number. Then I heard her say "it's how high!?" Yea lady...this is why you listen to your patients when they call and say they are feeling horrible. However, all that being said I never did get a phone call from my doctor today. The levels are really way high and way low when you look at the T4 and can cause some potentially dangerous complications for me but I have a feeling my doctor didn't even see the results. The receptionist was not to friendly when I called back at 4:30 today to check on the progress and she said the doctor hadn't signed off on them yet so they couldn't tell me anything. Whatever. They will be hearing from me in the morning for sure. Now don't freak out about the complications because I know what to look for and will immediately call for help if I need it. :)
I'm feeling okay today. Better than yesterday by far thankfully. My energy was horrible this morning but came back some this afternoon and evening. I only had one bout of pain today and that was short lived an in my shoulder instead of hip today. I've had some dizzy spells but not as many. My lack of focus had one bad time but came back fairly quickly thankfully. As I'm typing this I can feel the energy leaving my body though so I have a feeling an early bedtime for me will be in order. I had some friends over this evening to help clean which was wonderful. They did a great job and the kids all got to play together and have a fun evening. I started my low iodine diet today. After a rough morning with it (I didn't have anything in the house I could eat) I was able to go to the store and get some things I needed. I even made homemade peanut butter today. It is delicious! I may never buy jarred peanut butter again! :)
Oh get this...after having my blood drawn and going through all the runaround with my doctor's office about the injections which I don't even need now, CVS calls and tells me they need me to authorize delivery of the injections to my doctor's office for tomorrow or the next day. I just started laughing when I talked to the woman. She also informed me that it will be 100% covered by my insurance as we have met our deductible and out of pocket expense maximum for the year. What in the world was the hold up then...I'm guessing it had to do with my doctor's office. Whatever...at least it is all straightened out now.
Okay...I am seriously out of energy all of a sudden so I am going to have to stop this post for now. All in all I am happy that my levels show that I am indeed not crazy and this stuff is not in my head and we are not blowing things out of proportion. Now if I can just get my doctor to call me back so we can get my radioactive iodine scheduled all would be well.
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