My Surgery is scheduled for Tuesday,January 11th at 2:50 pm. Of course the time may be different, because afternoon surgery times are always likely to change, since the other cases before you may take more or less time than scheduled. I will be going in a little bit earlier that day because I will be having a PIC line put in, in place of an IV. I am a very difficult stick for IV's, so they use and X-Ray and put in a line in the upper arm. I did realize that the date is 1-11-11 which is kind of neat! The surgery is scheduled to be approx. 2 hours. They have not told me how long I will be in the hospital, but as long as there are no complications I think I will come home Thursday or Friday, judging from past experience. Thank you all for your continued thoughts and prayers!
Wishing you and yours a Merry Christmas and a Happy New Year!
Wednesday, December 15, 2010
Sunday, December 5, 2010
Update 12-5-10
Hey Everyone,
I hope you had a wonderful Thanksgiving, and are getting ready to have a Blessed Christmas season. I have a lot to be thankful for, but also need to ask you all to continue praying for me, and my Thyroid Cancer Journey. About a month ago I was having some really severe pain in my back, but it was different than I have ever felt, it was a really sharp pain that was aggravated when I would move (especially getting in and out of a chair) or lean back against it. I had a feeling that it had something to do with one of the screws in my back, because the pain was right around a spot where you could feel one of the screws, and it almost looked a little bit swollen to Josh. The pain was really bad for about 10 days, so I scheduled an appointment with the doctor. Of course by the time I got in to see him, the pain was not as bad, but of course I was still going to go. I went early in the morning, and had an X-Ray before Josh and I met with him. When we saw the X-Ray, the cause of the pain seemed to be apparent, one of the rods in my back seemed to not be in line with the other. The doctor wanted to be sure he was seeing things correctly, and that my back was not twisted for the X-Ray, causing this angle. He sent me straight for a CT scan, and then wanted me to come right back after the scan. As soon as we left to go down for the scan, I knew in the back of my mind that our suspicions were correct, but of course wanted to be sure. If you don't remember I have a "metal cage" to support where the doctors removed most of 2 1/2 vertebra in my first surgery, as well as two metal rods held in by screws. In the two surgeries I have had on my back since they were put in, the doctor has had to take them out, and put them back, and extend one of them. When we met with the doctor a second time, he confirmed what we already knew, I needed another surgery. It turns out that the top screw holding the right rod in my back is working its way out of the bone. I asked the doctor if this was a common occurrence, and he said NO but he could understand why it happened in my case. Since they have had to take the screws in and out, and since I have had radiation to that area, the hold of the screw was compromised. So surgery # 8 will be coming some time after the New Year. The plan right now is to remove the whole rod on the right side. During surgery, he will make sure that the left rod is secure, and enough support my back, but since I have had time to heal since my original surgery, he feels that one rod should be enough. As long as my pain stays under control, Josh and I (along with my doctor) decided it would be best to wait until January. I do not want to have surgery right before Christmas or my 25th birthday on the 30th of December. If I were to be in too much pain, the doctor said he could squeeze me in before Christmas. I had an MRI of my spine last Monday, but have not heard back on the results of that. I have asked the doctor to scan as well as consult with my other doctors to see if there is anything else that needs attention, because if I am being operated on, I want as much done at one time as possible.
I also started the new medication, Nexavar on October 22nd, so I have been on it for almost 6 weeks. I am tolerating it much better than the Sutent. It was at 6 weeks that they had to take me off of Sutent because of all the side effects and my blood counts dropping. Dr. B is watching my blood work weekly, and it has dropped a little but nothing too drastic. They will have to watch my platelet count, because that cannot be too low before my surgery. I have been quite fatigued, but am doing what I can, and resting when I need to. Thank God I have understanding bosses, and I still have a job (if anyone does not know I work for my parents). My dad says this is my time to get better, so that I am around to work at the store when he wants to retire in the future. I have had some nausea too, and a few other minor side effects, but overall I am tolerating the medication.
I want to thank you all for your continued prayers for Josh and I, and our families. It means so much to us to know how much support we have out there. I will be sure to update you once I have a surgery date.
I wish you a Merry Christmas, and a Very Happy New Year.
I hope you had a wonderful Thanksgiving, and are getting ready to have a Blessed Christmas season. I have a lot to be thankful for, but also need to ask you all to continue praying for me, and my Thyroid Cancer Journey. About a month ago I was having some really severe pain in my back, but it was different than I have ever felt, it was a really sharp pain that was aggravated when I would move (especially getting in and out of a chair) or lean back against it. I had a feeling that it had something to do with one of the screws in my back, because the pain was right around a spot where you could feel one of the screws, and it almost looked a little bit swollen to Josh. The pain was really bad for about 10 days, so I scheduled an appointment with the doctor. Of course by the time I got in to see him, the pain was not as bad, but of course I was still going to go. I went early in the morning, and had an X-Ray before Josh and I met with him. When we saw the X-Ray, the cause of the pain seemed to be apparent, one of the rods in my back seemed to not be in line with the other. The doctor wanted to be sure he was seeing things correctly, and that my back was not twisted for the X-Ray, causing this angle. He sent me straight for a CT scan, and then wanted me to come right back after the scan. As soon as we left to go down for the scan, I knew in the back of my mind that our suspicions were correct, but of course wanted to be sure. If you don't remember I have a "metal cage" to support where the doctors removed most of 2 1/2 vertebra in my first surgery, as well as two metal rods held in by screws. In the two surgeries I have had on my back since they were put in, the doctor has had to take them out, and put them back, and extend one of them. When we met with the doctor a second time, he confirmed what we already knew, I needed another surgery. It turns out that the top screw holding the right rod in my back is working its way out of the bone. I asked the doctor if this was a common occurrence, and he said NO but he could understand why it happened in my case. Since they have had to take the screws in and out, and since I have had radiation to that area, the hold of the screw was compromised. So surgery # 8 will be coming some time after the New Year. The plan right now is to remove the whole rod on the right side. During surgery, he will make sure that the left rod is secure, and enough support my back, but since I have had time to heal since my original surgery, he feels that one rod should be enough. As long as my pain stays under control, Josh and I (along with my doctor) decided it would be best to wait until January. I do not want to have surgery right before Christmas or my 25th birthday on the 30th of December. If I were to be in too much pain, the doctor said he could squeeze me in before Christmas. I had an MRI of my spine last Monday, but have not heard back on the results of that. I have asked the doctor to scan as well as consult with my other doctors to see if there is anything else that needs attention, because if I am being operated on, I want as much done at one time as possible.
I also started the new medication, Nexavar on October 22nd, so I have been on it for almost 6 weeks. I am tolerating it much better than the Sutent. It was at 6 weeks that they had to take me off of Sutent because of all the side effects and my blood counts dropping. Dr. B is watching my blood work weekly, and it has dropped a little but nothing too drastic. They will have to watch my platelet count, because that cannot be too low before my surgery. I have been quite fatigued, but am doing what I can, and resting when I need to. Thank God I have understanding bosses, and I still have a job (if anyone does not know I work for my parents). My dad says this is my time to get better, so that I am around to work at the store when he wants to retire in the future. I have had some nausea too, and a few other minor side effects, but overall I am tolerating the medication.
I want to thank you all for your continued prayers for Josh and I, and our families. It means so much to us to know how much support we have out there. I will be sure to update you once I have a surgery date.
I wish you a Merry Christmas, and a Very Happy New Year.
Wednesday, September 29, 2010
The Game Plan...
I am sorry that there has been so much happening, so I have not posted. It is difficult for me when things are so up in the air, and undecided or changing so quickly. I can't really let others know what is going on when I personally have no idea, but we finally have a plan. As you may remember, originally I was going to be having surgery today, Sept 29th but obviously that was postponed/cancelled. We went to Memorial Sloan Kettering on Friday (Mom, Josh, and I), and I was sort of hoping they would just say "you are doing the right thing, keep going", but that is not quite the answer we got. They did not disagree with our plans, but basically both the surgeon and oncologist felt it may be good to wait on surgery and look into some kind of medication, most likely through a clinical trial. We got names of doctors from University of Maryland, and Johns Hopkins and have been trying to contact both hospitals about the options for trials they might have for me. My endocrinologist in DC knows people at both places, so he was helping us look into what is out there. I will be going to meet a doctor at Johns Hopkins on Oct 22nd, but not to actually start any clinical trial, just to meet him and make the contact in case we need him in the future.
The decision we have come to is to try the medication called Nexavar, which is similar to the Sutent that I tried on the clinical trial, but I will not be part of any trial. The reason we are not going with a clinical trial right now is because most of them are in early phases, so they are being tested more for safety than for their effectiveness. Dr. B said the decision is up to us, but if it were him he would go with a medication that has more of a track record. Also, I can't get in to see any doctors about trials for a few weeks, then we would have to do scans and it may be that I would not even qualify for a trial, then 2 months would be wasted. Another benefit to not doing a trial is if my blood levels drop this time, they will be allowed to do things to help boost them, where on a trial they would be limited in what else they could give me. We are waiting on surgery for now. If have start having "symptoms" they could operate at any time but we are going to give the medication a try, and just control the pain I have been having with medication. So I guess the prayer I need is that my pain will be controlled, that I will not get as sick on this medication as I did on the Sutent, and that my insurance company will pay for the medicine. Hopefully I will tolerate this medication better. It has been a crazy, and very draining week but I feel relieved to have my radiation oncologist helping manage my pain, and to have finally come to a decision so we can move forward. Hopefully I can meet with Dr. B on Monday to get the prescription.
Sorry again that I did not keep you updated while things were so crazy. Thanks for all the prayers!!
Hattie
The decision we have come to is to try the medication called Nexavar, which is similar to the Sutent that I tried on the clinical trial, but I will not be part of any trial. The reason we are not going with a clinical trial right now is because most of them are in early phases, so they are being tested more for safety than for their effectiveness. Dr. B said the decision is up to us, but if it were him he would go with a medication that has more of a track record. Also, I can't get in to see any doctors about trials for a few weeks, then we would have to do scans and it may be that I would not even qualify for a trial, then 2 months would be wasted. Another benefit to not doing a trial is if my blood levels drop this time, they will be allowed to do things to help boost them, where on a trial they would be limited in what else they could give me. We are waiting on surgery for now. If have start having "symptoms" they could operate at any time but we are going to give the medication a try, and just control the pain I have been having with medication. So I guess the prayer I need is that my pain will be controlled, that I will not get as sick on this medication as I did on the Sutent, and that my insurance company will pay for the medicine. Hopefully I will tolerate this medication better. It has been a crazy, and very draining week but I feel relieved to have my radiation oncologist helping manage my pain, and to have finally come to a decision so we can move forward. Hopefully I can meet with Dr. B on Monday to get the prescription.
Sorry again that I did not keep you updated while things were so crazy. Thanks for all the prayers!!
Hattie
Monday, September 13, 2010
9-13-10 Update
As most people know I went to meet with some of my doctors last week, so I am a little bit late in writing an update. From the initial report about my scans, we were thinking things were pretty good, but it turned out to be a little bit more complicated than we originally thought. I met with my thoracic surgeon who compared scans from Feb, May, and August and although the reports say the tumor is about the same size, my surgeon was not really convinced that it has stopped growing, she is feeling like there may have been some changes in the tumor. It turns out that the largest tumor remaining that they sent me to the surgeon for (it is more than 5cm) is not actually in my lung, but kind of sitting right between the two lungs and if it grows could start to affect my breathing. For this reason I believe I will be having surgery, which is tentatively scheduled for 9/29.
There are several other smaller tumors that we are considering removing since they will already be operating. My doctors are still trying to work out what the best approach is, and my endocrinologist is overseas until 9/20 so even though we can consult with him via email, we are still not sure what is going to happen.
To be honest, I have been having a real hard time emotionally with this, I think because I don't really know what is going to happen. I feel like if they are going to operate I just want it done, and then want to move ahead with some sort of medication. It seems like a constant waiting game, and in my mind that just gives the cancer more time to grow. Another thing, that I know will be good but it also kind of stressful is that we are trying to get a second opinion from Memorial Sloan Kettering Cancer Center in New York. It has been in the back of my mind (and other family members) to do something like this, but after talking with our close family friend who is an oncologist in Kentucky we decided to seriously look into it. My doctors office is working on getting together all the records MSKCC has requested, and once we have sent those I should hear back about when we can get an appointment. The difficult thing is that I know I want things to move as quickly as possible, and I don't want to postpone this surgery if I don't have to, but it seems wise to get the second opinion before operating, in case these doctors have a different idea for treatment. The advantage to going to a cancer treatment hospital is that all the doctors work together from the same place, whereas I am going back and forth between hospitals and different doctors offices. We are hoping having everyone in one place will help, plus since they specialize in cancer treatment they may have options of other medications or trials that my current doctors don't.
So as you can see, there is a lot going on right now and we really need your prayers. Pray that we are able to get this second opinion as quickly as possible, for my current doctors in deciding on what they think is best, and for my emotional state which is a little shaky right now. Usually if I get emotional, it is normally for a day or two then I am able to pull it together but right now with so many unknowns, and so much happening (but yet not soon enough) I really am pretty shaken. I know that God has a plan for us, and that it is all in his hands but I am still human and am struggling right now. I thank God for my family, and especially Josh who has been my rock through this. I don't know how I would get through this without my family, because right now I am really leaning on them for support.
I will let you know if there are any more developments, or decisions made. Thanks for all your love and prayers.
Hattie
There are several other smaller tumors that we are considering removing since they will already be operating. My doctors are still trying to work out what the best approach is, and my endocrinologist is overseas until 9/20 so even though we can consult with him via email, we are still not sure what is going to happen.
To be honest, I have been having a real hard time emotionally with this, I think because I don't really know what is going to happen. I feel like if they are going to operate I just want it done, and then want to move ahead with some sort of medication. It seems like a constant waiting game, and in my mind that just gives the cancer more time to grow. Another thing, that I know will be good but it also kind of stressful is that we are trying to get a second opinion from Memorial Sloan Kettering Cancer Center in New York. It has been in the back of my mind (and other family members) to do something like this, but after talking with our close family friend who is an oncologist in Kentucky we decided to seriously look into it. My doctors office is working on getting together all the records MSKCC has requested, and once we have sent those I should hear back about when we can get an appointment. The difficult thing is that I know I want things to move as quickly as possible, and I don't want to postpone this surgery if I don't have to, but it seems wise to get the second opinion before operating, in case these doctors have a different idea for treatment. The advantage to going to a cancer treatment hospital is that all the doctors work together from the same place, whereas I am going back and forth between hospitals and different doctors offices. We are hoping having everyone in one place will help, plus since they specialize in cancer treatment they may have options of other medications or trials that my current doctors don't.
So as you can see, there is a lot going on right now and we really need your prayers. Pray that we are able to get this second opinion as quickly as possible, for my current doctors in deciding on what they think is best, and for my emotional state which is a little shaky right now. Usually if I get emotional, it is normally for a day or two then I am able to pull it together but right now with so many unknowns, and so much happening (but yet not soon enough) I really am pretty shaken. I know that God has a plan for us, and that it is all in his hands but I am still human and am struggling right now. I thank God for my family, and especially Josh who has been my rock through this. I don't know how I would get through this without my family, because right now I am really leaning on them for support.
I will let you know if there are any more developments, or decisions made. Thanks for all your love and prayers.
Hattie
Sunday, August 29, 2010
Update Aug 29, 2010
Just a quick update for everyone. First of all I started a Blog to post medical updates, because I figured it may be easier for people to access, and for me to manage.
Here is the latest update, I had a CT scan on 8/26 and things were mostly good, but there is one thing the doctors want to look into further. There were no new leisions, and nothing had grown, which is great and hopefully means that the short time I was on the Sutent was able to keep the cancer from growing. The problem was it made me so sick, and my blood levels dropped so low that I could not continue to take it. The plan is to start another similar medication, but I needed to have a scan to see if the Sutent had any effect, and to get a baseline before we start a new medication. Even though nothing has grown, there is a tumor in the area of my left lung that measures around 5cm (close to 2.5 inches) that the doctors want to look in to. It has been there, and not grown since Feb but my doctor now wants me see my Thoracic surgeon, and radiation oncologist to get their opinion. They may decide to leave it alone, and just try the new medication, or they may want to treat this tumor before we start the new meds, I am really not sure. I am working on scheduling the appointments to get their opinions. My endocrinologist just feels that it is a large mass to just not address, so that is why he wants me to check in with the surgeon. I will update you again, once I have met with the round of doctors, but please keep us in your prayers. I tole Josh before this scan that I was nervous because the last three Septembers (07, 08, and 09) I have had to have a surgery and I was hoping to break that cycle this year, but right now we are unsure if they will want to operate or just keep and eye on it.
Take Care,
Hattie
Here is the latest update, I had a CT scan on 8/26 and things were mostly good, but there is one thing the doctors want to look into further. There were no new leisions, and nothing had grown, which is great and hopefully means that the short time I was on the Sutent was able to keep the cancer from growing. The problem was it made me so sick, and my blood levels dropped so low that I could not continue to take it. The plan is to start another similar medication, but I needed to have a scan to see if the Sutent had any effect, and to get a baseline before we start a new medication. Even though nothing has grown, there is a tumor in the area of my left lung that measures around 5cm (close to 2.5 inches) that the doctors want to look in to. It has been there, and not grown since Feb but my doctor now wants me see my Thoracic surgeon, and radiation oncologist to get their opinion. They may decide to leave it alone, and just try the new medication, or they may want to treat this tumor before we start the new meds, I am really not sure. I am working on scheduling the appointments to get their opinions. My endocrinologist just feels that it is a large mass to just not address, so that is why he wants me to check in with the surgeon. I will update you again, once I have met with the round of doctors, but please keep us in your prayers. I tole Josh before this scan that I was nervous because the last three Septembers (07, 08, and 09) I have had to have a surgery and I was hoping to break that cycle this year, but right now we are unsure if they will want to operate or just keep and eye on it.
Take Care,
Hattie
Aug 17, 2010 3 years and counting...
Hey Everyone,
Just wanted to send out a quick update to let everyone know what is going on. I realize it has been a while, but it has been another one of those situations where we were somewhat unsure of what the next step was going on be, so therefore it was hard to explain to everyone what is going on. I will try to be brief, since things are not definite, but it will give you an idea of what to be praying for.
I am officially no longer on the clinical trial. The medication caused my white blood cell count and platelet count to drop too low, and according to the trial protocol they could only hold the medication for 4 weeks, but it took longer than that for my body and blood levels to recover, so I am no longer eligible for that particular trial. I had a bone marrow biopsy a few weeks ago, to make sure that my marrow was ok, which thank God it was. There is no cancer in my bone marrow, and everything tested normal which is great news! It is normal for people to have blood count drops on medications like Sutent, but the doctors determined that given my past history of raidoactive iodine treatments, the toxicity of the medication was too much for my bone marrow to handle. My blood levels are finally back to normal, and I am feeling much better so now we are working on determining what is next. I will be having a full body CT scan soon to see if the medication had any effect for the short time I was on in, and to get a baseline for the next course of treatment. The plan is to either try a lower dose of Sutent, or another medication called Nexxavar which is a similar type of medication but maybe I will tolerate it better. One question we have to get answered is what medication my insurance company will cover, so that will also be a factor.
We met with Dr B and another doctor in the Oncology/Hematology department yesterday. In short she said that the most important thing is to treat the cancer, and if my blood levels drop again, there are different things that they can do to supplement me, and help my body deal with it. She does not want low blood counts to be a reason not to treat my cancer. I will just have to be conscious of the indicators that my levels are dropping, and have regular bloodwork, which I have done for 3 years. I also want to be sure that they other side effects I was having (nausea, fatigue, loss of appetite, ect) are controlled better this time so that I can try to live as normally as possible.
So that is where we are right now, CT scan and then determining which medication to try, and now that we know what happened with the first medication, we are more prepared to be ahead of side effects the second time around.
It was three years ago yesterday that I first heard the words "you have cancer". Of course I think it has been a much different ride than the doctors initially expected, since every sterotype of Thyroid cancer, I seem to experience the opposite. I continue to thank the Lord for the AMAZING husband he has given me, and the wonderful family and friends who have been there to support us. I cannot imagine going through this without all the wonderful support that I have had, and contiue to have.
I want to thank you all for your continued prayers, I know how powerful prayer can be!!
Take Care,
Hattie
Just wanted to send out a quick update to let everyone know what is going on. I realize it has been a while, but it has been another one of those situations where we were somewhat unsure of what the next step was going on be, so therefore it was hard to explain to everyone what is going on. I will try to be brief, since things are not definite, but it will give you an idea of what to be praying for.
I am officially no longer on the clinical trial. The medication caused my white blood cell count and platelet count to drop too low, and according to the trial protocol they could only hold the medication for 4 weeks, but it took longer than that for my body and blood levels to recover, so I am no longer eligible for that particular trial. I had a bone marrow biopsy a few weeks ago, to make sure that my marrow was ok, which thank God it was. There is no cancer in my bone marrow, and everything tested normal which is great news! It is normal for people to have blood count drops on medications like Sutent, but the doctors determined that given my past history of raidoactive iodine treatments, the toxicity of the medication was too much for my bone marrow to handle. My blood levels are finally back to normal, and I am feeling much better so now we are working on determining what is next. I will be having a full body CT scan soon to see if the medication had any effect for the short time I was on in, and to get a baseline for the next course of treatment. The plan is to either try a lower dose of Sutent, or another medication called Nexxavar which is a similar type of medication but maybe I will tolerate it better. One question we have to get answered is what medication my insurance company will cover, so that will also be a factor.
We met with Dr B and another doctor in the Oncology/Hematology department yesterday. In short she said that the most important thing is to treat the cancer, and if my blood levels drop again, there are different things that they can do to supplement me, and help my body deal with it. She does not want low blood counts to be a reason not to treat my cancer. I will just have to be conscious of the indicators that my levels are dropping, and have regular bloodwork, which I have done for 3 years. I also want to be sure that they other side effects I was having (nausea, fatigue, loss of appetite, ect) are controlled better this time so that I can try to live as normally as possible.
So that is where we are right now, CT scan and then determining which medication to try, and now that we know what happened with the first medication, we are more prepared to be ahead of side effects the second time around.
It was three years ago yesterday that I first heard the words "you have cancer". Of course I think it has been a much different ride than the doctors initially expected, since every sterotype of Thyroid cancer, I seem to experience the opposite. I continue to thank the Lord for the AMAZING husband he has given me, and the wonderful family and friends who have been there to support us. I cannot imagine going through this without all the wonderful support that I have had, and contiue to have.
I want to thank you all for your continued prayers, I know how powerful prayer can be!!
Take Care,
Hattie
June 1, 2010
Hey All,
I know it has been a little while since you have received and update as to my medical status. I intend to keep people updated, but when I still have unanswered questions, or things are changing quickly I hesitate until I am sure about what is going on. As you know I had surgery to remove more tumors from my spine on March 8th, followed by 7 treatments of external beam radiation, and 3 cyberknife radiation treatments to my thoracic spine. Just recently I had a PET/CT scan (basically a full body scan to check where the cancer is in my body). There were some good things on the scan, and a few concerns. It looks like the radiation helped some in my back, but I still have some other areas of concern that they are still watching. Because I still have "measurable disease" that was not within the area that received radiation, I am eligible to be in a clinical trial for a medication called Sutent. It is a medication that has been approved by the FDA for other types of cancer, but my endocrinologist at Washington Hospital Center is in charge of a clinical trial to test the medication in Advanced Thyroid Cancer. This has been a long time coming, we originally began discussing it last fall but when I had scans, they found I needed surgery, and then the same thing happened in Feb/Mar. Now three surgeries and multiple radiation treatments later I have finally completed all of the testing, and am officially started on the trial as of today. I actually had to make a rush trip to WHC today to have one last blood test that was missed and pick up the medication, because if I did not start today I would have to have a new MRI or my neck because my previous one would have "expired". So after a very hectic/stressful day I have my medication, and am hoping for the best. I have to go see my doctor every 4 weeks and have scans every 3 months or so (some scans are farther apart) to see how I am reacting to the medication. I just pray that I do not have any major side effects, and that the medicine actually works... I will be on the trial for 1 year, unless for some reason I choose to opt out (the only reason would be if I had side effects that I could not deal with). There are only about 10 people with thyroid cancer on this trial at WHC so far, they are hoping to get up to 46 participants. My doctor has told me that most people have either responded well, or at least remained stable (not better, but not worse) who are on this medication. I think that there has only been one person who has had progression of disease on the trial, but who knows if they would have had more progression without the medication (I am trying to stay as positive as possible while being a "guinea pig" ;-) ).
My doctor also wants to give me Zometa, which is an IV medication usually given every 6 months to strengthen my bones, since I have had cancer in my bones. This medication is usually used for osteoporosis. They will probably give me this in a month or two, because they do not want to start the Sutent and Zometa at the same time, because if I were to have a reaction to one of them, they would not be able to tell which medication was causing it. Lastly, since I am on such a high dose of thyroid medication, my resting heartrate is usually somewhere around 100 beats per minute, which is too fast. I have just been prescribed a beta-blocker to try and slow my heart down.They don't want to reduce my thyroid meds because my bloodwork looks good, and they are trying to supress things as much as possible with it. But, if my heart continues to beat this fast for an extended period of time, it could be damaging. They will check it again when I go back in 4 weeks to see if the medication has helped, or if I need to be on a higher dose.
I know this is alot of details, but from what most of you have told me you like to know in detail what is going on, so you can know specifically what to pray for. I want to thank all of you again for your continued thoughts and prayers as Josh and I go through this trial in our life.
On a happier note, Josh and I just celebrated our 4th wedding anniversary on May 20th, and got to go away for a wonderful weekend to celebrate, and more importantly just relax!!! I thank God every day for bringing Josh into my life to be my rock through this. As I have said before, I never knew the part of our vows "in sickness or in health" would be so important. Josh (and our families) have been by my side every step of the way, and that has really helped me deal with this. For the most part I have been able to keep a positive attitude through all of this. Like a family friend once said, we all have to empty our pitcher sometimes, and I have my moments but overall I really try to stay positive. I was speaking with a woman doing one of my tests just the other day, and she got misty eyed when I told her my story. She asked me how I was able to have such a good attitude? My thought is that no matter if I am upset, or happy I am still going to have the cancer, so I just choose to be happy as much as I can! Plus I have an amazing support system, both in the Lord and my family.
I probably could keep going all night, but I promise this is the end. I will try to keep you updated on how the clinical trial is going and about my health overall.
Thanks again for your thoughts and prayers,
Hattie
I know it has been a little while since you have received and update as to my medical status. I intend to keep people updated, but when I still have unanswered questions, or things are changing quickly I hesitate until I am sure about what is going on. As you know I had surgery to remove more tumors from my spine on March 8th, followed by 7 treatments of external beam radiation, and 3 cyberknife radiation treatments to my thoracic spine. Just recently I had a PET/CT scan (basically a full body scan to check where the cancer is in my body). There were some good things on the scan, and a few concerns. It looks like the radiation helped some in my back, but I still have some other areas of concern that they are still watching. Because I still have "measurable disease" that was not within the area that received radiation, I am eligible to be in a clinical trial for a medication called Sutent. It is a medication that has been approved by the FDA for other types of cancer, but my endocrinologist at Washington Hospital Center is in charge of a clinical trial to test the medication in Advanced Thyroid Cancer. This has been a long time coming, we originally began discussing it last fall but when I had scans, they found I needed surgery, and then the same thing happened in Feb/Mar. Now three surgeries and multiple radiation treatments later I have finally completed all of the testing, and am officially started on the trial as of today. I actually had to make a rush trip to WHC today to have one last blood test that was missed and pick up the medication, because if I did not start today I would have to have a new MRI or my neck because my previous one would have "expired". So after a very hectic/stressful day I have my medication, and am hoping for the best. I have to go see my doctor every 4 weeks and have scans every 3 months or so (some scans are farther apart) to see how I am reacting to the medication. I just pray that I do not have any major side effects, and that the medicine actually works... I will be on the trial for 1 year, unless for some reason I choose to opt out (the only reason would be if I had side effects that I could not deal with). There are only about 10 people with thyroid cancer on this trial at WHC so far, they are hoping to get up to 46 participants. My doctor has told me that most people have either responded well, or at least remained stable (not better, but not worse) who are on this medication. I think that there has only been one person who has had progression of disease on the trial, but who knows if they would have had more progression without the medication (I am trying to stay as positive as possible while being a "guinea pig" ;-) ).
My doctor also wants to give me Zometa, which is an IV medication usually given every 6 months to strengthen my bones, since I have had cancer in my bones. This medication is usually used for osteoporosis. They will probably give me this in a month or two, because they do not want to start the Sutent and Zometa at the same time, because if I were to have a reaction to one of them, they would not be able to tell which medication was causing it. Lastly, since I am on such a high dose of thyroid medication, my resting heartrate is usually somewhere around 100 beats per minute, which is too fast. I have just been prescribed a beta-blocker to try and slow my heart down.They don't want to reduce my thyroid meds because my bloodwork looks good, and they are trying to supress things as much as possible with it. But, if my heart continues to beat this fast for an extended period of time, it could be damaging. They will check it again when I go back in 4 weeks to see if the medication has helped, or if I need to be on a higher dose.
I know this is alot of details, but from what most of you have told me you like to know in detail what is going on, so you can know specifically what to pray for. I want to thank all of you again for your continued thoughts and prayers as Josh and I go through this trial in our life.
On a happier note, Josh and I just celebrated our 4th wedding anniversary on May 20th, and got to go away for a wonderful weekend to celebrate, and more importantly just relax!!! I thank God every day for bringing Josh into my life to be my rock through this. As I have said before, I never knew the part of our vows "in sickness or in health" would be so important. Josh (and our families) have been by my side every step of the way, and that has really helped me deal with this. For the most part I have been able to keep a positive attitude through all of this. Like a family friend once said, we all have to empty our pitcher sometimes, and I have my moments but overall I really try to stay positive. I was speaking with a woman doing one of my tests just the other day, and she got misty eyed when I told her my story. She asked me how I was able to have such a good attitude? My thought is that no matter if I am upset, or happy I am still going to have the cancer, so I just choose to be happy as much as I can! Plus I have an amazing support system, both in the Lord and my family.
I probably could keep going all night, but I promise this is the end. I will try to keep you updated on how the clinical trial is going and about my health overall.
Thanks again for your thoughts and prayers,
Hattie
Mar 2, 2010
Family and Friends,
I know it has been a while since I last update you. I have been meaning to do so lately, but was waiting until I had more answers, but now I need to ask for your continued prayers. As some of you know I am planning on being a part of a clinical trial for a medication called Sutent, which is in its second phase of testing at Washington Hospital Center and has had some pretty good results. There are a set of scans/tests that must be run first to see if I am eligible, and secondly as a baseline to compare to future studies once I am on the medication. The first was a PET/CT, something that I have about every 6 months anyway, to see if I even had tumors large enough to qualify for the study. When we got the results, it turned out there was indication of disease in my spine and chest region. This along with the fact that I have had continuing back pain lately caused my neurosurgeon to be concerned, and he asked for an MRI of my spine to compare to my pre surgical MRI from the fall. He wanted to compare them to see if these were new tumors, or ones that were missed during my previous surgery in October. My MRI was Monday morning, and my doctor called me this morning with the results. He says that there are a few spots in my spine that show re currant tumors, and there is one that seems to be starting to compress my spinal cord again. He feels that this could explain the symptoms (pain) I have been having in my back. Due to the results., he wants to operate, and soon. He has rearranged his schedule, and I will be having a back surgery on Monday, March 8th at 3pm. Josh and I will be meeting with him on Thursday to discuss it in more detail. He feels that he needs to operate, because if we were to put it off and just try the medication, there could be risk of my spinal cord being damaged by the tumor. I am hoping that after this surgery I can continue with the clinical trial, as both my endocrinologist and a close family friend who is an oncologist both are in favor of it. I know this is sudden, and I will say that I am scared, but I am glad that my doctors are being aggressive and proactive. I have said from that start that I am young, and in relatively good health other than the cancer, so I want to be as aggressive as possible to try and kick this thing for good. I ask that you keep Josh and I, and our family in your prayers through this continuing situation. I will try to keep you updated as much as I can.
Thanks for the continued prayers,
Hattie
I know it has been a while since I last update you. I have been meaning to do so lately, but was waiting until I had more answers, but now I need to ask for your continued prayers. As some of you know I am planning on being a part of a clinical trial for a medication called Sutent, which is in its second phase of testing at Washington Hospital Center and has had some pretty good results. There are a set of scans/tests that must be run first to see if I am eligible, and secondly as a baseline to compare to future studies once I am on the medication. The first was a PET/CT, something that I have about every 6 months anyway, to see if I even had tumors large enough to qualify for the study. When we got the results, it turned out there was indication of disease in my spine and chest region. This along with the fact that I have had continuing back pain lately caused my neurosurgeon to be concerned, and he asked for an MRI of my spine to compare to my pre surgical MRI from the fall. He wanted to compare them to see if these were new tumors, or ones that were missed during my previous surgery in October. My MRI was Monday morning, and my doctor called me this morning with the results. He says that there are a few spots in my spine that show re currant tumors, and there is one that seems to be starting to compress my spinal cord again. He feels that this could explain the symptoms (pain) I have been having in my back. Due to the results., he wants to operate, and soon. He has rearranged his schedule, and I will be having a back surgery on Monday, March 8th at 3pm. Josh and I will be meeting with him on Thursday to discuss it in more detail. He feels that he needs to operate, because if we were to put it off and just try the medication, there could be risk of my spinal cord being damaged by the tumor. I am hoping that after this surgery I can continue with the clinical trial, as both my endocrinologist and a close family friend who is an oncologist both are in favor of it. I know this is sudden, and I will say that I am scared, but I am glad that my doctors are being aggressive and proactive. I have said from that start that I am young, and in relatively good health other than the cancer, so I want to be as aggressive as possible to try and kick this thing for good. I ask that you keep Josh and I, and our family in your prayers through this continuing situation. I will try to keep you updated as much as I can.
Thanks for the continued prayers,
Hattie
Nov 5, 2009
Hey everyone,
Just wanted to let everyone know that I am finally out of the hospital. I came home to my mom & dad's house wednesday afternoon. Josh and I are staying here for a bit so that I can have someone with me and josh can continue to work. Surgery went well, the surgeon said he got all the tumor he could see, which is great. They did end up removing one of the rods in my back, and ended up putting a longer one back in because they could not use the same holes from the first one.
I had a few rough days in the hosptial with headaches. Since they were working around my spinal cord, there must have been some slight spinal fluid leackage. That mixed with the drain they had in my back caused me to have what some refer to as a "spinal headache" (I have had this once before after a procedure where they put iodine in my spinal fluid to do a scan before cyberknife). Basically the only way I could get releif was to lay flat on my back with not much light and an ice pack on my head. Any time I had to get up to go to the bathroom or anything, my head would pound. Once they took the drain out, things started to get better, and today I have not had any headache (knocking on wood). Mom and Josh were great with me in the hospital, basically playing tag team on staying with me.
There is a company coming to the house tomorrow to fit me with some kind of back brace my doctor wants me to wear. I did not have on after my first back surgery, so I am unfamiliar with what it will be like. I go back to see the surgeon on 10/16. My group of doctors have also recommended I get both the regular flu shot and the swine flu shot, so I am going to my primary doc tomorow to get blood drawn to make sure all my levels are high enough to get these shots.
I want to thank everyone for they prayers for Josh and I and our families.
I am trying to get as much rest as possible so I can heal and get back on my feet.
I am sure there is something I have forgotten, but I just wanted to get and update out to let people know what is going on with me, and whay my prayer needs are.
Take Care,
Hattie
Just wanted to let everyone know that I am finally out of the hospital. I came home to my mom & dad's house wednesday afternoon. Josh and I are staying here for a bit so that I can have someone with me and josh can continue to work. Surgery went well, the surgeon said he got all the tumor he could see, which is great. They did end up removing one of the rods in my back, and ended up putting a longer one back in because they could not use the same holes from the first one.
I had a few rough days in the hosptial with headaches. Since they were working around my spinal cord, there must have been some slight spinal fluid leackage. That mixed with the drain they had in my back caused me to have what some refer to as a "spinal headache" (I have had this once before after a procedure where they put iodine in my spinal fluid to do a scan before cyberknife). Basically the only way I could get releif was to lay flat on my back with not much light and an ice pack on my head. Any time I had to get up to go to the bathroom or anything, my head would pound. Once they took the drain out, things started to get better, and today I have not had any headache (knocking on wood). Mom and Josh were great with me in the hospital, basically playing tag team on staying with me.
There is a company coming to the house tomorrow to fit me with some kind of back brace my doctor wants me to wear. I did not have on after my first back surgery, so I am unfamiliar with what it will be like. I go back to see the surgeon on 10/16. My group of doctors have also recommended I get both the regular flu shot and the swine flu shot, so I am going to my primary doc tomorow to get blood drawn to make sure all my levels are high enough to get these shots.
I want to thank everyone for they prayers for Josh and I and our families.
I am trying to get as much rest as possible so I can heal and get back on my feet.
I am sure there is something I have forgotten, but I just wanted to get and update out to let people know what is going on with me, and whay my prayer needs are.
Take Care,
Hattie
Aug 13, 2009
Hey All,
It has been a little while since I last updated. I had my Raidoactive Iodine Treatment back in April and we have been waiting on results. The RAI did cause my white blood cell count go drop very low (it is supposed to be between 3-8 and mine was like 1.8 or something like that) it has now gone back up to somewhere around 4 or so, so my doctor is happy with that. Some of you may have heard that I got a report from My Endocrinologist, Dr B. that there was no new growth, but that the tumor in my neck, and one in my back (just above the surgery site) had grown slightly and were still showing up on the PET scan. Because of this I did go see the Neurosurgeon and Otolaryngologist (sp?) better know as the Ear Nose and Throat doctor. The Neurosurgeon was not too concerned at this point. In looking at an MRI I had of my spine he said that the remaining tumor in the metal area is unchanged, and there may be a small one on T8 but as long as I am not having any symptoms and feeling well he wants to give the Iodine more time and repeat testing in 3-6 months and see how things look at that point. The ENT was unable to look at the scan while I was in the office, but said that based on the report the tumor growth was not very much, but he would call me with his final recommendations. I got that call this afternoon, in which I was informed that he would like to operate to remove the infected lymphnode in my neck. It turns out that it is sitting right near the nerve that controls my voice box, and he does not want to risk it growing any larger and possibly affecting that nerve. You all know how this thing did a number on my spine, so I don't want to know what it could do to my nerves. He said that although it has no grown much (aprox 1mm) in the past few months, it has not shrunk like they wanted it to with the treatment, so it would be better to go ahead and take it out now rather than risk complications later. He mentioned doing it some time in September. I did request that it be after Sept 6th, as that is the day Katie and Josh are getting married and I am in the wedding. He said that was fine, and he would have his assistant call me to schedule a time for surgery.
I am doing alright, I had somewhat mentally prepared myself for this on monday, so it was not a complete shock. My hope is that we can get this out of my neck, and then the only place we will have to keep really watching is my back, as my lungs were clear on the last scan, praise God!!
On Aug 6th it was 2 years from when I originally went in the hospital, and August 16th will be 2 years since my cancer diagnosis. About a year ago my sister Richi took a bunch of my get well cards and put them in an album for me to keep. I was reading them the other day, and it is so comforting to know how many supporters I have throughout this ordeal. I know God has big plans for Josh and I to be equipping us in this way so early in our marriage.
I just ask everyone to keep praying for Josh and I, and our families. That we will draw closer to each other, and more importantly closer to God.
I will keep you updated on when the surgery will be.
Love,
Hattie
It has been a little while since I last updated. I had my Raidoactive Iodine Treatment back in April and we have been waiting on results. The RAI did cause my white blood cell count go drop very low (it is supposed to be between 3-8 and mine was like 1.8 or something like that) it has now gone back up to somewhere around 4 or so, so my doctor is happy with that. Some of you may have heard that I got a report from My Endocrinologist, Dr B. that there was no new growth, but that the tumor in my neck, and one in my back (just above the surgery site) had grown slightly and were still showing up on the PET scan. Because of this I did go see the Neurosurgeon and Otolaryngologist (sp?) better know as the Ear Nose and Throat doctor. The Neurosurgeon was not too concerned at this point. In looking at an MRI I had of my spine he said that the remaining tumor in the metal area is unchanged, and there may be a small one on T8 but as long as I am not having any symptoms and feeling well he wants to give the Iodine more time and repeat testing in 3-6 months and see how things look at that point. The ENT was unable to look at the scan while I was in the office, but said that based on the report the tumor growth was not very much, but he would call me with his final recommendations. I got that call this afternoon, in which I was informed that he would like to operate to remove the infected lymphnode in my neck. It turns out that it is sitting right near the nerve that controls my voice box, and he does not want to risk it growing any larger and possibly affecting that nerve. You all know how this thing did a number on my spine, so I don't want to know what it could do to my nerves. He said that although it has no grown much (aprox 1mm) in the past few months, it has not shrunk like they wanted it to with the treatment, so it would be better to go ahead and take it out now rather than risk complications later. He mentioned doing it some time in September. I did request that it be after Sept 6th, as that is the day Katie and Josh are getting married and I am in the wedding. He said that was fine, and he would have his assistant call me to schedule a time for surgery.
I am doing alright, I had somewhat mentally prepared myself for this on monday, so it was not a complete shock. My hope is that we can get this out of my neck, and then the only place we will have to keep really watching is my back, as my lungs were clear on the last scan, praise God!!
On Aug 6th it was 2 years from when I originally went in the hospital, and August 16th will be 2 years since my cancer diagnosis. About a year ago my sister Richi took a bunch of my get well cards and put them in an album for me to keep. I was reading them the other day, and it is so comforting to know how many supporters I have throughout this ordeal. I know God has big plans for Josh and I to be equipping us in this way so early in our marriage.
I just ask everyone to keep praying for Josh and I, and our families. That we will draw closer to each other, and more importantly closer to God.
I will keep you updated on when the surgery will be.
Love,
Hattie
May 15, 2009
Went to the doctor yesterday for a checkup. They will do a full body scan at the end of July to check on how things are going. Although the treatment will not have had time to complete its work, they will be checking to make sure that none of my tumors are larger. As long as they are the same size, or hopefully smaller than it will be a good report. All my blood levels are getting back to normal, except for my White Blood Cell count. The RAI treatment can affect a persons bone marrow, so they monitor my bloodwork more closely after treatment. My levels were a low a few weeks ago, but they were not too concerned, but on thursday they were even lower, so the docs want to monitor me a little closer. I will have another set of labs drawn monday to make sure they are stabilizing, or going back up. As long as they do not keep going down I should be fine. The doctor just told me to call if I feel like I have fever or chills, or seem to be getting sick. I guess one of the biggest concerns is that if I were to get sick, my body would have alot harder time fighting the infection. I know alot of you have been praying, and I thank you for that, it really means alot and I know I will get through this with God's help.
Take Care,
Hattie
Take Care,
Hattie
April 9, 2009
Sorry that this has taken me so long to get this out, I know it is a little bit overdue, but I kept feeling like there was more I needed to find out from my doctors before I updated everyone, but I think I know as much as I am going to for now, so here it goes. Also, I want to appoligize for this being so long, but I wanted to tell the whole story.
Back in the fall I had a cyberknife radiation on the tumor in my spine. Then I had a nice long break (almost 2 months) of no doctors appointments from Thanksgiving to after the new year. I think I got a little too used to it, but after the new year started it was back to fighting. I had an MRI that showed that the tumor in my spine had not yet gotten smaller, but it was no larger, so we look at it as a positive. The doctors assured me that it can take months for these treatments to really have an effect. Then I had a PET/CT scan to help decide if we should do another Raidoactive Iodine (I-131) treatment. The scan showed the my lungs look clear (YEA) but that there is a small spot on the right side of my neck, most likely a lymphnode, that looked suspicious as well as the activity in my spine that we already knew about. All of my doctors agreed that I-131 was the way to go, so I went on the Low Iodine Diet and went off my medicine in early March. The last week of March I was at WHC every day for scans and tests to decide just how much Iodine they could give me to be as effective as possible without harming me. I was admitted to the hospital 4-2 overnight where I was given 411 millicuries of Raidoactive Idoine. (I know this probably does not mean much to you, but to put it in perspective they cannot give over 200 without doing the "dosemetery" process that I went through. The doc did say they have given up to almost 900, but that 411 is a very significant dose. Last time in 10-07 I was given 332MCi) I believe that my new Endocrinologist pushed for as high a dose as possible because he knows that I want to be as aggressive as possible, and since I am so young he feels the same way, and feels that I can handle it. I must say that I am so blessed to have Dr Burman as my doctor, he is so wonderful, and truely understands me and how I want to be treated. He understands that Josh and I have plans for our life after this cancer is undercontrol and wants to help us get there. The rest of my medical team is amazing as well, but Dr Burman is kind of the "head chef in the kitchen" and I cannot think of a better person to be there.
Back to the update, I stayed up all night in the hospital chewing gum and sucking on candies to protect my salivary glands, showering, and drinking as much water as possible to try and clear as much Iodine from my system. I was released Friday afternoon, and came home to be "quarentined". Wednesday I went back to WHC for my post therapy scan. Mom went with me since Josh really needed to work. (Just a side note, it was not until my post therapy scan back in Fall 07 that we found the tumor in my lung, so we were a little nervous that again they would find something new, but were trusting God, the doctors, and the loads of tests I have had since then that we were aware of all the metastis) They did the three standard scans, then the doctors took a look and asked for one more of my chest/back. I know mom's heart sunk when they took me away, but I was just praying that they just wanted another view of my spine, which turned out to be the case. The scans show the doctors where in my body the Iodine was taken up. There are particular organs that they know absorb the Idoine, and then any other locations they see are cancer that have taken it up. The spot in my neck and my spine both lit up, which is positive because it means that they are being treated, but there was one spot that was a little suspecious, so they called in another doctor. The mentioned that it could be my "thymus" gland which is known to take up iodine, but it was not really in the right place or qute the right shape. Mom and I were on the verge of panic, but then they thought about my history and realized that because of my lung lobectomy and thyroidectomy my thymus could be displaced. In comparing the scan to my PET/CT they confirmed that this was the case. So all in all, things looked good. There is still cancer in my body, but we know where it all is, and it took up the iodine and is being treated. I feel like it is 1 down, 2 to go becasue there was cancer three places, my neck, lung, and back and now my lungs are clear we just have to get the other two. At this point is is a waiting game to let the treatments I have had work. The Iodine can take 6months to a year to take full effect. They will closely monitor my blood for then next few weeks to make sure my white blood cell counts and other levels are ok, then it will go back to monthly blood work. I go see Dr Burman in a month, then will have another MRI of my spine in a few months, and a PET/CT in August.
I am feeling OK, I am back on my Thyroid Hormone, so my energy level is slowly coming back. They did put me on a steroid (predinsone) during my treatment to reduce the risk of the tumor in my back from swelling and compressing my spinal cord (the iodine can cause things to swell before it starts killing them). Since I have been on them for almost 2 weeks, I have to taper the dose down, rather than just quit taking them, because my body could react badly if I just stopped. The only problem with taking this is that I am retaining alot of fluid in my midsection and face/chin, which makes me feel bloated and yucky, so I cannot wait for that to go away.
I will be going back to work on monday, and I think it will be nice to get back to my normal routine. Just keep praying that this treatment kill the cancer in my body. I was so encouraged by my uncle yesterday. He is a man of few words, but he heard me say "I just hope that this treatment is going to work" and he responded "Hattie, we do not need to hope it will work, we know it is going work".
I want to thank all of you for your thoughts and prayers for me, Josh and our family during this season in our life. We will be celebrating our 3rd wedding anniversary May 20th, and what a ride it has already been. I looked at Josh in the doctors office the other day and realized that three years ago we had no idea that this is where we would be, but God must have something really specail for us in the future to be preparing us like this. We did not think the "in sickness and in health" part of our vows would come so soon, but I am blessed with the best husband in the world, and cannot imagine going through this without him by my side.
Again sorry this is so long, but I hope you are all doing well.
Have a very Happy and Blessed Easter,
Take Care
Hattie
Back in the fall I had a cyberknife radiation on the tumor in my spine. Then I had a nice long break (almost 2 months) of no doctors appointments from Thanksgiving to after the new year. I think I got a little too used to it, but after the new year started it was back to fighting. I had an MRI that showed that the tumor in my spine had not yet gotten smaller, but it was no larger, so we look at it as a positive. The doctors assured me that it can take months for these treatments to really have an effect. Then I had a PET/CT scan to help decide if we should do another Raidoactive Iodine (I-131) treatment. The scan showed the my lungs look clear (YEA) but that there is a small spot on the right side of my neck, most likely a lymphnode, that looked suspicious as well as the activity in my spine that we already knew about. All of my doctors agreed that I-131 was the way to go, so I went on the Low Iodine Diet and went off my medicine in early March. The last week of March I was at WHC every day for scans and tests to decide just how much Iodine they could give me to be as effective as possible without harming me. I was admitted to the hospital 4-2 overnight where I was given 411 millicuries of Raidoactive Idoine. (I know this probably does not mean much to you, but to put it in perspective they cannot give over 200 without doing the "dosemetery" process that I went through. The doc did say they have given up to almost 900, but that 411 is a very significant dose. Last time in 10-07 I was given 332MCi) I believe that my new Endocrinologist pushed for as high a dose as possible because he knows that I want to be as aggressive as possible, and since I am so young he feels the same way, and feels that I can handle it. I must say that I am so blessed to have Dr Burman as my doctor, he is so wonderful, and truely understands me and how I want to be treated. He understands that Josh and I have plans for our life after this cancer is undercontrol and wants to help us get there. The rest of my medical team is amazing as well, but Dr Burman is kind of the "head chef in the kitchen" and I cannot think of a better person to be there.
Back to the update, I stayed up all night in the hospital chewing gum and sucking on candies to protect my salivary glands, showering, and drinking as much water as possible to try and clear as much Iodine from my system. I was released Friday afternoon, and came home to be "quarentined". Wednesday I went back to WHC for my post therapy scan. Mom went with me since Josh really needed to work. (Just a side note, it was not until my post therapy scan back in Fall 07 that we found the tumor in my lung, so we were a little nervous that again they would find something new, but were trusting God, the doctors, and the loads of tests I have had since then that we were aware of all the metastis) They did the three standard scans, then the doctors took a look and asked for one more of my chest/back. I know mom's heart sunk when they took me away, but I was just praying that they just wanted another view of my spine, which turned out to be the case. The scans show the doctors where in my body the Iodine was taken up. There are particular organs that they know absorb the Idoine, and then any other locations they see are cancer that have taken it up. The spot in my neck and my spine both lit up, which is positive because it means that they are being treated, but there was one spot that was a little suspecious, so they called in another doctor. The mentioned that it could be my "thymus" gland which is known to take up iodine, but it was not really in the right place or qute the right shape. Mom and I were on the verge of panic, but then they thought about my history and realized that because of my lung lobectomy and thyroidectomy my thymus could be displaced. In comparing the scan to my PET/CT they confirmed that this was the case. So all in all, things looked good. There is still cancer in my body, but we know where it all is, and it took up the iodine and is being treated. I feel like it is 1 down, 2 to go becasue there was cancer three places, my neck, lung, and back and now my lungs are clear we just have to get the other two. At this point is is a waiting game to let the treatments I have had work. The Iodine can take 6months to a year to take full effect. They will closely monitor my blood for then next few weeks to make sure my white blood cell counts and other levels are ok, then it will go back to monthly blood work. I go see Dr Burman in a month, then will have another MRI of my spine in a few months, and a PET/CT in August.
I am feeling OK, I am back on my Thyroid Hormone, so my energy level is slowly coming back. They did put me on a steroid (predinsone) during my treatment to reduce the risk of the tumor in my back from swelling and compressing my spinal cord (the iodine can cause things to swell before it starts killing them). Since I have been on them for almost 2 weeks, I have to taper the dose down, rather than just quit taking them, because my body could react badly if I just stopped. The only problem with taking this is that I am retaining alot of fluid in my midsection and face/chin, which makes me feel bloated and yucky, so I cannot wait for that to go away.
I will be going back to work on monday, and I think it will be nice to get back to my normal routine. Just keep praying that this treatment kill the cancer in my body. I was so encouraged by my uncle yesterday. He is a man of few words, but he heard me say "I just hope that this treatment is going to work" and he responded "Hattie, we do not need to hope it will work, we know it is going work".
I want to thank all of you for your thoughts and prayers for me, Josh and our family during this season in our life. We will be celebrating our 3rd wedding anniversary May 20th, and what a ride it has already been. I looked at Josh in the doctors office the other day and realized that three years ago we had no idea that this is where we would be, but God must have something really specail for us in the future to be preparing us like this. We did not think the "in sickness and in health" part of our vows would come so soon, but I am blessed with the best husband in the world, and cannot imagine going through this without him by my side.
Again sorry this is so long, but I hope you are all doing well.
Have a very Happy and Blessed Easter,
Take Care
Hattie
Nov 1, 2008
I realize it has been a little while since I let everyone know what is going on with me. Last i wrote they were thinking about operating on my back to remove the recurrant tumor, but that is not the case anymore. They have decided to do cyberknife radiosurgery:
CyberKnife® is a nonsurgical, painless technology that can reduce or eliminate certain lesions and tumors, many previously considered inoperable anywhere in the body. A sophisticated robotic radiosurgery system, CyberKnife can also offer significantly fewer complications and lower risk than open surgery.
http://www.georgetownuniversityhospital.org/body.cfm?id=451
All of my doctors have agreed on this approach for now, so I am just praying it works. Surgery is always an option, but I hope to not have to go through that again. I will be going in for five days in a row for this treatment, on 11/10-11/14. The great thing about is is there is no pain, and no recovery time from this. My endocrinologist has told me that I will probably have another raidoactive iodine treatment 2-3 months after cyberknife. Hopefully that will clean up any little bits of cancer left, so I don't have to keep fighting this.
Another thing going on with me right now is that I have started seeing a nutritionist. We figured that anything we can do to fight this, we were willing to do. I will spare you of the details, but he basically told me that the cancer can feed off of sugars, and things your body converts to sugar, so my best bet is to cut those things out of my diet, therefore cutting off the cancer's food supply. So right now I am basically eating eggs, meat, and veggies. That is the first 6-8 weeks. After this initial period I will be allowed to add back some fruits and a few other things. I am not supposed to eat any grains (ie rice, bread, pasta, ect) When I first started this I had a TOTAL breakdown. I think I had been botteling all of my feelings about everything, and at some point they just had to overflow. So this on top of sugar withdraw I was a WRECK. Luckly Josh and my family have stood by me and I am adjusting to it. I have the best husband ever, he is doing this diet with me, which is so helpful!! Another cool thing is that I have lost over 20 pounds already. So right now we are just working on getting back to my normal life, even though these day's I am not really sure what normal is.
I hope everyone is doing well, I will be sure to keep you updated on any news or changes.
Take Care,
Hattie
CyberKnife® is a nonsurgical, painless technology that can reduce or eliminate certain lesions and tumors, many previously considered inoperable anywhere in the body. A sophisticated robotic radiosurgery system, CyberKnife can also offer significantly fewer complications and lower risk than open surgery.
http://www.georgetownuniversityhospital.org/body.cfm?id=451
All of my doctors have agreed on this approach for now, so I am just praying it works. Surgery is always an option, but I hope to not have to go through that again. I will be going in for five days in a row for this treatment, on 11/10-11/14. The great thing about is is there is no pain, and no recovery time from this. My endocrinologist has told me that I will probably have another raidoactive iodine treatment 2-3 months after cyberknife. Hopefully that will clean up any little bits of cancer left, so I don't have to keep fighting this.
Another thing going on with me right now is that I have started seeing a nutritionist. We figured that anything we can do to fight this, we were willing to do. I will spare you of the details, but he basically told me that the cancer can feed off of sugars, and things your body converts to sugar, so my best bet is to cut those things out of my diet, therefore cutting off the cancer's food supply. So right now I am basically eating eggs, meat, and veggies. That is the first 6-8 weeks. After this initial period I will be allowed to add back some fruits and a few other things. I am not supposed to eat any grains (ie rice, bread, pasta, ect) When I first started this I had a TOTAL breakdown. I think I had been botteling all of my feelings about everything, and at some point they just had to overflow. So this on top of sugar withdraw I was a WRECK. Luckly Josh and my family have stood by me and I am adjusting to it. I have the best husband ever, he is doing this diet with me, which is so helpful!! Another cool thing is that I have lost over 20 pounds already. So right now we are just working on getting back to my normal life, even though these day's I am not really sure what normal is.
I hope everyone is doing well, I will be sure to keep you updated on any news or changes.
Take Care,
Hattie
Sept 6, 2008
Hello All,
Just a quick not to let you know that I am out of the hospital. We came home late Friday night. I am still rather sore but doing alright. I just want to clear up any confusion about the surgery I just had, because some of the details seem to have gotten confused. On wednedsay morning, the doctors went in to remove a tumor in my left lung. The tumor was a lymph node that the cancer has spread to, that was either not caught, or not there when I first had lung surgery in february. Lymph nodes are "Any of the small, oval or round bodies, locatednalong the lymphatic vessels, that supply lymphocytes to the bloodstream and remove bacteria and foreign particles from the lymph". It is not really uncommon for cancer to spread through the lymph systom. The tumor that was in my lung this time was a cancerous lymph node. While Dr. Marshal was operating, she looked around for any other cancerous or non-cancersous lymphnodes to take out, since I don't NEED them she just assumed take whatever she could find. She did find one out of the aprox 6 she removed that she believed was also cancerous, but will not know for sure about any of them until the pathology comes back. Three of the lymph nodes she removed were on my pericardium (the membranous sac enclosing the heart) and the other three in my lung. They also removed the upper lobe of my left lung (a lobectomy). It was the easiest, and safest way to get everything out. I will be fine, there are two lobes in your left lung, and three in your right, and the left are smaller since that is the side the heart is on. I can live a perfectly normal life without this lobe. There have also been questions about the kind of cancer that I have. I have Stage 2 Papillary Thyroid Cancer. No matter how much spread or anything, a patient cannot be above a stage 2 unless you are over the age of 45, because it is not reallythat lethal. My case is a rather "agressive" case but it is not as "lethal" or "terminal" as alot of other cancers. They do believe they can cure me, and get it under control, it is just somewhat of a neusance to do so.My endocrinologist called me on Monday before the surgery to reassure me of this, and to let me know that I will be ok. I am going to see another neurosergeon to see about the second tumor in my spine. This one is within the new bone growth that was placed within the hardware where they removed verterbrae. They will remove that tumor at some point, and then we will do another raidoactive iodine treatment. I am sorry if some of this makes no sense, I realize that all of you are not nearly as familiar with this as I am, so I hope I am explaning it in a way for everyone to understand. Please feel free to ask if you have any questions, I will try to answer them the best I can.
Thanks for the prayers,
Take Care,
Hattie
Just a quick not to let you know that I am out of the hospital. We came home late Friday night. I am still rather sore but doing alright. I just want to clear up any confusion about the surgery I just had, because some of the details seem to have gotten confused. On wednedsay morning, the doctors went in to remove a tumor in my left lung. The tumor was a lymph node that the cancer has spread to, that was either not caught, or not there when I first had lung surgery in february. Lymph nodes are "Any of the small, oval or round bodies, locatednalong the lymphatic vessels, that supply lymphocytes to the bloodstream and remove bacteria and foreign particles from the lymph". It is not really uncommon for cancer to spread through the lymph systom. The tumor that was in my lung this time was a cancerous lymph node. While Dr. Marshal was operating, she looked around for any other cancerous or non-cancersous lymphnodes to take out, since I don't NEED them she just assumed take whatever she could find. She did find one out of the aprox 6 she removed that she believed was also cancerous, but will not know for sure about any of them until the pathology comes back. Three of the lymph nodes she removed were on my pericardium (the membranous sac enclosing the heart) and the other three in my lung. They also removed the upper lobe of my left lung (a lobectomy). It was the easiest, and safest way to get everything out. I will be fine, there are two lobes in your left lung, and three in your right, and the left are smaller since that is the side the heart is on. I can live a perfectly normal life without this lobe. There have also been questions about the kind of cancer that I have. I have Stage 2 Papillary Thyroid Cancer. No matter how much spread or anything, a patient cannot be above a stage 2 unless you are over the age of 45, because it is not reallythat lethal. My case is a rather "agressive" case but it is not as "lethal" or "terminal" as alot of other cancers. They do believe they can cure me, and get it under control, it is just somewhat of a neusance to do so.My endocrinologist called me on Monday before the surgery to reassure me of this, and to let me know that I will be ok. I am going to see another neurosergeon to see about the second tumor in my spine. This one is within the new bone growth that was placed within the hardware where they removed verterbrae. They will remove that tumor at some point, and then we will do another raidoactive iodine treatment. I am sorry if some of this makes no sense, I realize that all of you are not nearly as familiar with this as I am, so I hope I am explaning it in a way for everyone to understand. Please feel free to ask if you have any questions, I will try to answer them the best I can.
Thanks for the prayers,
Take Care,
Hattie
Aug 28, 2008
I feel like I am living in an endless "info-mercial", because everytime I think we have found everything there is to find, there is always the "but wait, there's more....", and we had another one of those moments today. I went last week for a bone scan, and another MRI, but this time of my entire spine. Today, we went to see the nerousergeon for the results. Of course we were hoping that there would be nothing, and we could proceed with next week's lung surgery, not having to worry about any other spots, but that was not the case. It turns out that there is a recurrant tumor in my spine, at the T10 level (which technically is replaced by metal, but has a bone graft inside where the turmor is attached. The doctor seems to think that this is "very approachable" and should not be too difficult to remove, but it does mean another surgery, number five for me. We did ask if it was possible to go after the tumor in my lung, and the one in my spine at the same time, but the doctors say they are two totally different approaches, and have told me they will do the surgeries seperately. So, since my lung surgery is already scheduled, I will proceed with that next week (Sept 3 at 7:30 AM). Then on the 8th of September I go to see another nerosurgeon about removing what is in my back. It is not an emergency, but they don't want to wait too long because it is right next to my spinal cord, and they are afraid if it continues to grow, that it may put pressure on the cord, which of course has not so good side effects (we already went through that with the first tumor). When it was just the lung tumor, the doctors were considering doing a raidoactive idoine treatment, instead of surgery, but it is good that we are not going that way because I was told today that if we had done that, it could have caused this tumor(in my back) to swell before it would start to kill it, but with it being so close to my spinal cord, that would have been bad. So I really feel like God has me in the right place, and is bringing the right doctors into my life when I need them. Also, another thing that was totally God was that Josh was supposed to work today, but it was raining,he had no inside projects, he did not go, and was able to be with mom and I instead. I was glad he was able to be there. For me this is still sinking in, I am trying to remain strong, but it is hard not to get shaken sometimes, but with the Lord as my God, as well as the amazing support system he has given me, I know I can get through this. I just ask for your continued thoughts and prayers for myself, and my family during this season in our lives. I will keep everyone updated as things progress.
Take Care,
Hattie
Take Care,
Hattie
Aug 14, 2008
I will not be having surgery on Aug 18th. It was first pushed back until the 27th and now has been pushed back again until Sept 3. Basically the neurosergeon wants an MRI or my whole spine (since they usually only focus on the part they operated on) and a bone scan, to make sure there is no cancer anywhere in my bones. The problem is that there is activity in my back when they do the PET scans, but the keep attributing it to "post surgical changes" basically that there is new bone still growing and things still healing. Also with the metal that is in my back, it makes it hard to see everything clearly. They want to make sure that they are not just relying on these being "post surgical changes" and that they are not missing anything. They really do not think they are, but it does not hurt to double check. They want to make sure there is no where else needing surgery before they operate. The surgery is not a definite, but a high possibility. Basically there is no one "right" way to treat this, we just have to take everything we know and try and make the best decision for me. There are arguments for and against surgery, but since I am young and can handle it, surgery will most likely be the route we go, followed by another dose of raidoactive iodine.
I will keep everyone updated on anything new...
Take Care,
Hattie
I will keep everyone updated on anything new...
Take Care,
Hattie
July 27, 2008
So it has been a little while since I have written anything about what is going on with me medically. I kept wanting to, but there were constantly unanswered questions so I just kept putting it off, but now I need to. The last note left off that we had postponed the radioactive iodine, which turns out to be the right decision. They had noticed some spots on some of my scans that they wanted to further investigate to figure out exactly what is going on. So since then I have had CT's, MRI's, and Ultrasounds. There was a spot in my neck and a spot in my lung that they wanted to look into.
Lately I have been a little disappointed in my endocrinologist, my main doctor who I will be following up with for the rest of my life. I was getting a little bit discouraged because I was having trouble getting my questions answered. When we went to visit the ENT surgeon for a checkup he mentioned a Dr. B at the Washington Hospital Center, who is actually the chief of the endocrinology department there. The next week we were consulting with Dr. V who is head of the Nuclear medicine department at WHC, and he too mentioned Dr. B as someone we may be interested in seeing. He said that it usually took four months for new patients to get in, but that he would contact them and see if he could get me in sooner. Just two hours later we got a call from a close friend who is and oncologist in Kentucky, Pat. He knows a thyroid specialist out there that we were considering going to visit, Dr. A, but when Pat spoke to Dr. A he recommended that we see Dr. B, because he is much closer to us. So all signs were pointing to us going to see Dr. B. The next day I got a call from Dr. B’s assistant, and I got an appointment for two weeks later (remember it usually takes 4 months). Dr. B was actually familiar with my case because they have a Thyroid Cancer Board that meets every few weeks to discuss different cases, so that everyone can put their heads together and figure out what to do. My case had been presented at this meeting several times.
We went to our appointment with Dr. B last Thursday and he is wonderful. He lays everything out there, but is very encouraging at the same time. He has been practicing for over 30 years, so I feel like I have a lot of experience on my side. We also went to see my thoracic surgeon last Thursday. It turns out there is another tumor in my left lung that needs to be removed. It is close to where the old one was, but not in the exact same place, and it is not as big this time. We have been told by all the doctors that if there is anything that can be surgically removed, that is the best way to get it out, so I am scheduled for surgery Aug. 18. We also heard back from the ENT surgeon, and he said there is nothing that needs to be removed in my neck, and to have it rechecked in a few months.
So that is where we are right now. On Aug 6 it will be 1 year since I was first admitted to the hospital and we found out about the first tumor, and on Aug 16 it will be one year since I was diagnosed with cancer. I never would have imagined that we would spend this year this way, but God has a plan for me, even if I am not quite sure what it is. He has been working through all of this and I know he will continue to be there for me.
Hattie
Lately I have been a little disappointed in my endocrinologist, my main doctor who I will be following up with for the rest of my life. I was getting a little bit discouraged because I was having trouble getting my questions answered. When we went to visit the ENT surgeon for a checkup he mentioned a Dr. B at the Washington Hospital Center, who is actually the chief of the endocrinology department there. The next week we were consulting with Dr. V who is head of the Nuclear medicine department at WHC, and he too mentioned Dr. B as someone we may be interested in seeing. He said that it usually took four months for new patients to get in, but that he would contact them and see if he could get me in sooner. Just two hours later we got a call from a close friend who is and oncologist in Kentucky, Pat. He knows a thyroid specialist out there that we were considering going to visit, Dr. A, but when Pat spoke to Dr. A he recommended that we see Dr. B, because he is much closer to us. So all signs were pointing to us going to see Dr. B. The next day I got a call from Dr. B’s assistant, and I got an appointment for two weeks later (remember it usually takes 4 months). Dr. B was actually familiar with my case because they have a Thyroid Cancer Board that meets every few weeks to discuss different cases, so that everyone can put their heads together and figure out what to do. My case had been presented at this meeting several times.
We went to our appointment with Dr. B last Thursday and he is wonderful. He lays everything out there, but is very encouraging at the same time. He has been practicing for over 30 years, so I feel like I have a lot of experience on my side. We also went to see my thoracic surgeon last Thursday. It turns out there is another tumor in my left lung that needs to be removed. It is close to where the old one was, but not in the exact same place, and it is not as big this time. We have been told by all the doctors that if there is anything that can be surgically removed, that is the best way to get it out, so I am scheduled for surgery Aug. 18. We also heard back from the ENT surgeon, and he said there is nothing that needs to be removed in my neck, and to have it rechecked in a few months.
So that is where we are right now. On Aug 6 it will be 1 year since I was first admitted to the hospital and we found out about the first tumor, and on Aug 16 it will be one year since I was diagnosed with cancer. I never would have imagined that we would spend this year this way, but God has a plan for me, even if I am not quite sure what it is. He has been working through all of this and I know he will continue to be there for me.
Hattie
May 28, 2008
So as I last wrote, I was preparing for a Raidoactive Iodine Treatment. Everything seemed to be heading in that direction, as I went down to Washington Hospital Center for 5 days in a row for scans and blood work to determine my dose. After that I also participated in a clinical trial. Tuesday was the last day of my trial scans, and we had planned to go talk to the docs, just about all the findings from that week. I had also had a PET scan where they give you a glucose in the vein that has a raidoactive component that is supposed to be a diagnostic for cancer. I did have a scan like this back in Feb before my last surgery. Mom and I sat for a while waiting for the doctors and finally got to sit down with the head of the Nuclear Medicine Dept there. We talked for a long time, and I will try and spare you all the medical details and just give you the important ones. The last Iodine treatment I had was 7 months ago, and I received a very large dose. It can take 8-12 months for the effects to totall take effect. Also, they want to let your body (especially your bone marrow) heal. This doctor basically said that looking at my chart and scnas, and hearing what mom and I had to say that he did not recommend doing I-131 this soon after my previous dose. This is not necessairly good news but it is not bad either. He explained it that he does not feel there is sufficient evidence that I am getting worse at this point, which would be the main reason to do another treatment this soon. He wants to have time to compare these new scans to the previous ones to compare things, and also get a few new updated CT's and MRI's. They will check any questionable spots to make sure they are the same or smaller. They will also double check that there is nothing more to surgically remove, because that is always the preferred way to remove things if possible (there is not necessairly anything that needs surgical removal, they just wanted to give me every possible scenerio). So basically we are just slowing things down right now, which I am fine with. I feel more comfortable double checking things and taking more time to make sure we are going the right route rather than rush into things and regret doing it so soon. We can always do the treatment later, we can't take it back. My case is a very specialized one that they want to treat that way. They want to really be careful to do the right things for me first, rather than have to go back and fix things later. So I started back on my thyroid meds and regular diet and am waiting for doctor's instructions and findings. At first we started to think where was this doctor before, but thinking about it God has perfect timing, and so I just need to trust in that and trust the medical professionals he has provided for me. Like I always say, he has not brought me this far to drop me now, and He will not give us anything we cannot handle without his help.
I hope this makes sense to everyone, if you have any questions I will try to answer them to the best of my ability. I just ask that you keep Josh and,our family, and my doctors in your prayers for continued healing and guidance through this season in our lives. Josh and I just celebrated our 2nd wedding anniversary and are looking forward to many more :-D
Hope this finds you well,
Take Care,
Hattie
I hope this makes sense to everyone, if you have any questions I will try to answer them to the best of my ability. I just ask that you keep Josh and,our family, and my doctors in your prayers for continued healing and guidance through this season in our lives. Josh and I just celebrated our 2nd wedding anniversary and are looking forward to many more :-D
Hope this finds you well,
Take Care,
Hattie
April 27, 2008
Dear Family and Friends,
First and foremost I want to thank everyone for their thoughts and prayers. I just wanted to update everyone on what is happening in my “medical journey”. I went to the neurosurgeon a few weeks ago. My original doctor was not available to see me, as he had to take some personal leave, so I saw another doctor. He took a look at my images after the appointment and said that they do not believe there is any new tumor growth in my spine. Last Thursday I saw my endocrinologist. My TSH level level was suppressed where they want it to be, but my Thyroglobulin levels had raised 100 points. Thyroglobulin levels in the blood can be used as a cancer marker for certain types of thyroid cancer, including the kind I have. Before my lung surgery my levels were over 2400, and about a month ago they were around 1400. This time they were around 1500. It was only an 8% increase, which is not huge, but the doctors are not sure what the cause may be. It will not change the treatment plan they have for me though. That plan is to have another Radioactive Iodine treatment.
My treatment is scheduled for May 29th. I stopped taking my medication as of Friday, and I start the Low Iodine Diet on May 5th in order to prepare for the treatment. I will be treated at Washington Hospital Center’s Department of Nuclear Medicine again, where I will repeat the same process that I went through in October of 2007. The week before the treatment I will take a “tracer” dose of iodine and then drive to WHC five days in a row to have blood work and scans in order to determine a specific dose. They also plan on doing a PET scan again to double check for any other tumors. Then I will be admitted to the hospital to receive my treatment. I should be home sometime Friday, but have to be careful with being around others and physical contact for 1-2 weeks.
I just ask that you would continue to keep Josh and me in your prayers. Being off my medication will cause me to become “hypothyroid”. Some of the symptoms of this are fatigue, cold intolerance, depression, constipation, muscle cramps, and joint pain. Hopefully my body will not react too badly to being off the meds, but I will just have to wait and see. Josh and I will be celebrating our 2nd wedding anniversary on May 20th, which will fall during the week that we go to WHC everyday. Two years ago, I never would have guessed that this is where we would be, but what can I say, sometimes God has different plans for us. Again, I want to thank everyone for your continued thoughts and prayers.
Take Care,
Hattie
First and foremost I want to thank everyone for their thoughts and prayers. I just wanted to update everyone on what is happening in my “medical journey”. I went to the neurosurgeon a few weeks ago. My original doctor was not available to see me, as he had to take some personal leave, so I saw another doctor. He took a look at my images after the appointment and said that they do not believe there is any new tumor growth in my spine. Last Thursday I saw my endocrinologist. My TSH level level was suppressed where they want it to be, but my Thyroglobulin levels had raised 100 points. Thyroglobulin levels in the blood can be used as a cancer marker for certain types of thyroid cancer, including the kind I have. Before my lung surgery my levels were over 2400, and about a month ago they were around 1400. This time they were around 1500. It was only an 8% increase, which is not huge, but the doctors are not sure what the cause may be. It will not change the treatment plan they have for me though. That plan is to have another Radioactive Iodine treatment.
My treatment is scheduled for May 29th. I stopped taking my medication as of Friday, and I start the Low Iodine Diet on May 5th in order to prepare for the treatment. I will be treated at Washington Hospital Center’s Department of Nuclear Medicine again, where I will repeat the same process that I went through in October of 2007. The week before the treatment I will take a “tracer” dose of iodine and then drive to WHC five days in a row to have blood work and scans in order to determine a specific dose. They also plan on doing a PET scan again to double check for any other tumors. Then I will be admitted to the hospital to receive my treatment. I should be home sometime Friday, but have to be careful with being around others and physical contact for 1-2 weeks.
I just ask that you would continue to keep Josh and me in your prayers. Being off my medication will cause me to become “hypothyroid”. Some of the symptoms of this are fatigue, cold intolerance, depression, constipation, muscle cramps, and joint pain. Hopefully my body will not react too badly to being off the meds, but I will just have to wait and see. Josh and I will be celebrating our 2nd wedding anniversary on May 20th, which will fall during the week that we go to WHC everyday. Two years ago, I never would have guessed that this is where we would be, but what can I say, sometimes God has different plans for us. Again, I want to thank everyone for your continued thoughts and prayers.
Take Care,
Hattie
Feb 29, 2008
I'M HOME!!!! well at least at mom and dad's house for now. Josh and i will be staying here again until i am able and feel comfortable to be home alone. Surgery went really well. Right before surgery the Surgeon came in and told us that her approach was that she did not want to take the whole lung, even if she was not able to get the whole tumor. She said that even if she could only remove 95% of the tumor surgerically she would rather do that and use other treatmetns to get rid of the rest, rather than compromise my lung. Well after surgery was over and i was awake the doctor came and told me it was BEST CASE SCENERIO and that the tumor came out completely (she feels) of course there are always chances of little tiny remnents but i will have other treatments that will help take care of that. The mass was approx the size of plum, but it came out relitively easily and they did not have to be quite as invasive in the surgery. So originally they thought i would be in the hospital for aprox 5 days but i was only in for three. Yesterday afternoon i was out of bed to go for a walk around the hospital like the docs asked me to do a few times a day when dr marshall came by and saw me up and about. She was beaming. She seemed so happy, and was so glad that i was doing so well. She asked me if i wanted to go home tomorrow, as long as my pain was under control, and an they also needed an mri of my spine. The day before surgery they did all kinds of tests all day to make sure there were no other tumors anywhere else in my body and i am happy to say there are no NEW locations. originally there was another spot on my lung that was in question but it is much smaller than the one they just removed and they are not even sure if it is a tumor or not. during my PET scan they gave this iv stuff that is supposed to light up places of "increased activity" i believe is what they say. OF course that showed the tumor they just removed from my lung but it also showed two small spots on my spine around where i had surgery before. The doctors are not convinced yet that this is recurrance because they told us that sometimes new bone growth take up this contrast. What is happening now that that there is going to be a big meeting on tuesday with hopefully most of the the doctors involved in my case along with some thyroid specialists to discuss what further treatment i should have from here. So we are waiting to hear the results from that, and i go back to see the doctor who just did my surgery in like a week and a half or so. we also have a close family friend who is an oncologist in kentucky. He knows a guy who specializes in thyroid diseases, so we are tyring to compile all of my records togther to send to him so that he can take a look. we also would like to possibly go see him just to get a second opinion and make sure that i am getting the best treatment for me.
I will let everyone know what is going on as we know more. I thank you all for your thoughts and prayers, they have really helped me, my husband, our families, and friends through this tough situation. I am still going by "i know God will never give me more than i can handle, with his help of course".
love,
Hattie
I will let everyone know what is going on as we know more. I thank you all for your thoughts and prayers, they have really helped me, my husband, our families, and friends through this tough situation. I am still going by "i know God will never give me more than i can handle, with his help of course".
love,
Hattie
Feb 22, 2008
For those of you who don't know the story this is how it started... All spring and summer of 07 i was suffering from back pain and the doctors kept thinking it was a strained or torn muscle and had me doing stretches and taking meds to help. None of these things seemed to work and in mid july i started having a tingling in my feet. It slowly moved up my legs over the next few weeks and i started having trouble walking. Then i got this really bad pain in my left side that just would not go away. I went to the er once but they took xrays and just said it was from side effects of the meds i was on. They must not have thought i was having trouble walking because of pain or something. On monday we went back another ER and they did a CT scan and found a mass on my spine. They rushed me to farifax hospital where they wanted to opearte that night, pretty much blindly but luckly through some family connections we got in touch with a wonderful nerosurgeon at Gerogetown Univ. Hospital who agreeded to take on my case. They did a biopsy the next day where they thought it was benin and then the next day they did a procedure to cut off some of the blood supply to the mass. Then the next day, aug 9th they did surgery. Nine hours later i had had two and a half vertebrea removed and replaced with metal. Thank god the Dr. who did the surgery is the same one who invented this contraption in my back twelve years ago. A week later i was getting ready to leave the hospital where they stopped us right before we were about to leave. They had found thyroid tissue in the tumor, which led them to find a nodule on my thyroid, it was thyroid cancer that had spread to my spine. So on sept fourth i had my thyroid removed. Then a month and a half later i had a raidoactive iodine treatment that was supposed to kill off any thyroid tissue remaining anywhere else in my body. So after the raidoactive iodine treatment that i had they did a scan of my body, and noticed a place in my lung where iodine had been absorbed, meaning there was tyroid tissue there. The doctors have been watching it since, i has a CT back in nov to moniter it, and then another just a week and a half ago. The one a week and a half ago showed what we hoped would not happen, the tumor was growing. Apparently it was too much for the iodine to handle. The doctor i have been seeing who has been trying to regulate my thyroid hormone supplement told me a few days ago about this, and basically said that they wanted to run several tests, and do some scans to see exactally what we are dealing with. They wanted me to go see the thoracic surgeon who assisted in the approach to my spine surgery, for what i thought was just to keep her in the loop in case surgery was needed later. Because of the weather here today, they had an opening so mom richi and i made the trek to georgetown to see her. Basically the news was, we know what this is because of your history, and we recommend surgery. I guess they want to do it sooner rather than later because the longer we wait. the more this thing may grow, and the harder it would be to remove. Also they do not want the cancer spreading anywhere else so i will be undergoing surgery on wednesday morning. There has been some confusion about the surgery. The placement in my lung is difficult, it is righ where the lung branches and there are arteries right there. The doctor is going to just try and remove the section where the tumor is attached, but she will not know until she operates exactally what she is dealing with. There is a possibility they may have to remove part of my left lung, or worst case scenerio they have to remove my whole lung, but that is WORST CASE SCENERIO. Alot of people have been jumping to the conclusion that they are just gonna take our the lung, but they are not going too unless absoutly necessary, so lets hope they dont. I feel like i am in good hands, and i know there are so many people out there praying for me. I thank God for that, and also for the amazing husband, and family he has given me as a support system, i do not know what i would do without them. I or someone will keep you posted on what is happening with me. Thanks again for your prayers.
Hattie
Hattie
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