Today I am STRESSING to do your own research on thyroid issues, diseases, and cancer since your doctor may not think of things like you might have Hashimoto's, hyperthyroid, and such. Also if you go to a pcp/family doctor to get thyroid testing done since it's cheaper than going to an ENT or endocrinologist... you know which tests to ask for. Due to the changes in late 2012, doctors now think that TSH only testing is the best route to go before testing other thyroid tests. This is WRONG! There are MANY people that have a TSH that shows up fine, but their Free T4 and Free T3 are not fine at all. The TSH test is more of a pituitary gland test and the thyroid patient community is trying to get doctors to view it as such. Now I'm not saying the test isn't important, it just shouldn't be done alone. The TSH test shows how the pituitary gland is reacting to the thyroid's hormone production... TSH will be high if the pituitary thinks the thyroid isn't producing enough and yelling at it to make more (hypothyroid), but if it's low, the pituitary gland thinks there is too much (hyperthyroid). The problem is... this is what the pituitary thinks and what if the pituitary gland is messed up or misreading the production level? That's why TSH alone isn't good, you need Free T4 and Free T3 tests to be able to COMPARE all of the results.
You can ASK your doctor to do more tests and tell them why you are asking for them. If you have a great doctor they will listen to you, but if they dismiss you and you really want those tests, demand it. Remember the doctor is hired by you, their job is to make you healthier and treat you... You are paying them for this service. Let's put it this way... You hire someone to take care of your plants and lawn... and you notice the plants are dying and the grass doesn't look good, you wouldn't just sit there and let it continue to happen, you would go and talk to the service provider and ask what's going on or fire them because they aren't treating it properly, they aren't keeping it healthy or treating it right. They aren't providing the service that you hired them for, so why would you allow this to happen to your body when you can prevent it by the right treatments and tests that you want?
Also to state... if you take the TSH test separately and then find out after those results that they want to do the Free T3 and Free T4. This will make you pay for the blood drawing fee twice, so to save some money might as well do it at the same time since you don't have to pay the extra fee for blood drawing. Also make sure that the T3 and F4 say Free... not Total. If it doesn't say Free on the paper order, they are asking for Total. Total results are affected by proteins in your body, which can give an incorrect result. It could make someone have normal results when it's either truly low or high and vice versa.
To give you an example (of myself)... in January I saw my endocrinologist for the first time and had done a TON of research including why my three different dosages of synthroid weren't working and all felt the same. Along with why was I still having hypothyroid symptoms while I was supposedly hyperthyroid and so on. When she was going off what tests she wanted to do she didn't list anything about T3 even though I complained about still being weak, tired, and blah blah blah. I asked about doing the Free T3 and Reverse T3 tests and right away she said no to Armour, which was odd since I never asked about it, and said cancer patients don't need T3. This isn't true and I know this based on my research and talking to other thyroid cancer patients, so that was my red flag. After I restated that all three dosage of synthroid all have felt the same, she gave me a very small dosage of T3 medication, but still refused to do the blood tests... which was my other red flag. The problem is depending how much of your T4 is converting into T3 and how much is being absorbed factors into the T3 dosage, but to find this out Free T3 and Reverse T3 are important tests that need to be done and done together. Your Reverse T3 and Free T3 have to be compared. Luckily my PCP is nice and listens to me because she gave me these tests among others that I wanted. It turns out my Reverse T3 is very high, but my T3 is in the normal range.
What does this mean for me? My body isn't absorbing T3 at all... it may be converting, but it's not absorbing. Now my TSH is very low (.020) and my T4 is normal as well, so based on the TSH, T4, and T3, a doctor could say I'm hyperthyroid or normal, but with the results from Reverse T3, I'm hypothyroid. The pituitary gland is probably reading the T4 levels I have been taking (synthroid) and not understanding that the T3 isn't being absorbed, which is why my ENT thinks I'm hyperthyroid.
If you have a family member that has a thyroid related auto-immune disease... I would ask for those tests as well since you never know. Also if you already have an auto-immune disease (other than the thyroid ones) and have thyroid issues (or suspecting to have a thyroid issue), you might have a thyroid related auto-immune disease as well since it has been found that people with an auto-immune disease tend to or have a high chance of having multiple types. Hashimoto's, one of the thyroid related auto-immune diseases, is usually viewed as a hypothyroid disease, but it can make you feel normal the one minute, hyperthyroid the next, and then hypothyroid. It's random and it can be in any order.
For tests that you can take for thyroid issues:
TSH, Free T3, and Free T4 - These are your basic tests and I would never do TSH only.
Reverse T3 - If you have been taking T4 only medication and find that it's not helping... I would ask for Reverse T3 and Free T3 and see what's going on there. Your body might not be converting or absorbing T3.
Thyroid peroxidase antibody (TPOAb) - This is present in both Hashimoto's (usually hypothyroid) and Graves (hyperthyroid) diseases. I would do this if you think you have a thyroid auto-immune disease or have someone in the family that has one. I had this done personally because my aunt has Hashimoto's. TPOAb has been linked to miscarriages, premature deliveries, and reproductive difficulties.
Thyroglobulin antibody (TgAb) - This is a Hashimoto's test to see if you have it.
Thyroid stimulating hormone receptor antibody, Thyroid Stimulating Immunoglobulin (TRAb, TSHR Ab, TSI) - These are tests for Graves disease, again to see if you have it.
There are other tests you can take to help with the thyroid care, some of them are vitamin related tests like B12 and Iron. There seems to be a connection with B12 and thyroid issues, some thyroid patients can't absorb B12 and have to take a shot for it. There's a list of other thyroid important tests that are listed on Stop the Thyroid Madness and on other sites as well.
The main purpose of this post is to research... don't have the mindset of your doctor knows all because they have went to school and been in the field for blah blah blah years as doctors are human too and can overlook things. Also sometimes doctors can place their bias opinions into play when it comes to your treatment and medication stuff. This is an issue when it comes to natural thyroid medication like Armour... remember most hospitals and doctor offices are funded and supported by large pharmaceutical companies like Abbott Laboratories (creators of Synthroid). Not all doctors, but a lot get incorrect information about natural thyroid medication and stick to the T4-only medication like Synthroid for their patients. If your doctor keeps adjusting your medication and it's never seems to make you feel even a little bit better... your body might not even be absorbing the medication right. If this is going on, changing to another brand can help since (another example) Synthroid and Levothyroxine are the same type of medication (synthetic thyroid), their fillers are different which can affect if the body absorbs it correctly. Some people have good results with Synthroid, but bad results with Levo. Sometimes a T4-only route might not be working for you as well... so there's that too. If you tried synthetics and they don't work well for you, you might need to try natural thyroid medication (many think this works best, but may not be for everyone).
If you think you aren't getting the right treatments or not doing all of the proper testing... fight! Don't just sit there! Talk to your doctor and if they don't listen... find a new doctor or get a second opinion. You can go to your family doctor/pcp for blood work to be done if your ENT or Endocrinologist won't... it's usually easier to do this anyways. I'm sure you don't want to feel like crap for 10, 20, or even 50 years from now... I know I don't.
To me, thyroid related research is a class assignment for me... it's a lifetime assignment that I must do to be able to make sure I get healthier and have close to a normal life again. I believe if I have not done my research and was not persistent on getting all of my blood work done that I will forever be stuck with feeling like crap for the rest of my life. Well, maybe not, I might have found a doctor that would test for Reverse T3 (though that is rare by what I have heard) or my TSH, Free T4, and Free T3 will eventually reflect the hypothyroid status. I now have hope that I will get better treatment and possibly be close to being my normal self again. Though I still have to worry if my doctors will listen to this Reverse T3 issue or if they will they just ignore it.
I will stress this right now... do your research on thyroid specialist sites as I have found sites that are medical sites that don't specialize in thyroid stuff don't giving the WHOLE story on thyroid related issues. You might want to check out thyroid disease and cancer groups on facebook to find some good sites on this subject.
Showing posts with label treatment. Show all posts
Showing posts with label treatment. Show all posts
Saturday, March 9, 2013
Friday, February 22, 2013
Learning to Care: How We Made It Through Cancer
So... I said I was going to do this on Thursday, but I was asleep most of the day and then had an appointment. Sorry! I'm going to make this a Friday event thing on the blog now. If you have a story to share just email me.
This story is from Cameron about his wife's and his story on their struggle with life and cancer. I think it's a story that needs to be shared.
On November 21st, 2005, my wife and I started a journey that would prove to be one of the most difficult challenges we’d ever face. This is the day that my wife was diagnosed with cancer, malignant pleural mesothelioma. It was also the moment in my life when I was no longer just a husband. I became a caregiver for someone who had cancer. I wasn't necessarily prepared for this kind of a job, but I did everything that I could to be there for my wife. It came at a strange time in our lives. We were just starting to figure out how to parent a newborn, our first and only. Our daughter Lily was born just three months before my wife's diagnosis.
I started my job as a caregiver the moment that my wife found out she had cancer. I was with her in the doctor's office, and the look on her face sent me into a panic. I didn't know what we were going to do as the doctor talked about treatment options. There were three different places that we could go, one of which was a specialist named Dr. David Sugarbaker in Boston. My wife was too shocked and paralyzed by fear to consider any of these options, and I knew that I had to make a decision for my family. I turned to the doctor and said, “Get us to Boston!” Soon after, my wife would begin treatment there, and there would be a lot of questions about how we were going to survive as a family.
The next few months were chaotic for my family. I was still working or at least, trying to work. I had so much stress from the bills, taking care of Lily while also taking care of my wife that I wasn't really sure how I got through those first few months. I wasn't at my best all the time, and despite my best efforts to stay positive I often imagined the worst case scenario, my wife passing away and leaving me a broke, widowed single father with a daughter who would never really know her mother. These were the darkest of days, and more than once I broke down crying under the pressure. However, despite having these weak moments I never let Heather see my fears. I knew she needed me to be strong for her.
My wife's family is extremely caring. They came through for us at a time when we needed them most. Not only did they provide financial support for us during a really hard time but they helped take care of Lily, and offered kind words of encouragement to help us get through the rough times.
If you are a caregiver
in a similar situation, take these lessons from someone who has been there
before. Don’t’ be afraid or ashamed to
ask for help. Allow yourself to have bad
days, these are inevitable and even necessary at times. Use every resource available to you, and
above all else never, ever give up hope for a better tomorrow.
After months of grueling
mesothelioma treatment,
Heather came out the other side cancer-free, and has remained so for nearly
seven years. We hope that by sharing our
experiences, we can help inspire all those currently in their own cancer
battles today.
Cameron has a blog of his own that if any of you care to read more about what his and his family have been dealing with and continue to deal with, here's the link: http://www.mesothelioma.com/
Thursday, December 27, 2012
Achievement: College
I started going to college this summer after not being in school for nine years and it would be at the end of that semester that I started having breathing issues. It would be on the first day of my second semester that I had the biopsy of the main nodule on my thyroid. I would be my fourth week of classes to find out I have cancer and my 6th week to get the gland removed. I would become behind in two of my three classes and have to play catch up with them. I struggled staying awake and having the energy to do my classwork, but I never gave up even though I felt like my world was falling apart. I was determined to not allow my cancer to take my future away from me... my dreams and my passion. I held on tight to those with both hands as I dealt with my cancer and as I continue to deal with it and the aftermath. I was able to pass my classes while dealing with all of that, the physical, and emotional pains.
I checked my school email account yesterday to see if I got my semester GPA, my overall GPA, and my academic standing... and I was shocked to what I found. I got on the Dean's List and mind you, I've never been on the honor roll when I was in school, but to get this while dealing with cancer... it just... wow. To me, this has taught me that even though you are ill, you can still achieve things, great things, and don't let someone tell you otherwise.
My next goal is to get on the Dean's List again next semester!
I checked my school email account yesterday to see if I got my semester GPA, my overall GPA, and my academic standing... and I was shocked to what I found. I got on the Dean's List and mind you, I've never been on the honor roll when I was in school, but to get this while dealing with cancer... it just... wow. To me, this has taught me that even though you are ill, you can still achieve things, great things, and don't let someone tell you otherwise.
My next goal is to get on the Dean's List again next semester!
Sunday, December 9, 2012
Awareness and Research
Currently I've been dealing with a lot: catching up in school, more health issues, waiting to go back to work, Thanksgiving, Christmas, and medication reactions. It's hasn't been fun for the most part, but the fiance does make it nice at times. This matters a lot to me and probably other cancer patients, to have someone there by their side through all of this. Some people are lucky and have family, friends and/or an SO near them to help them out, but if you have a friend that has cancer (or any diseases for that matter) that seems to be dealing with it on their own, be there for them in any way, you can even at least be a shoulder to cry on. It will help them a lot.
Anyways, I've been dealing with feeling weak in my muscles (mainly my legs), I walk slower now, I can't deal with the cold, my hip hurts, I'm having chest pains, head pains, right side of my neck is swollen, I'm having issues breathing, overly emotional at times because of medication, and anxiety. I had an x-ray on my hip due to the pain and issues with laying down at times, but the x-ray came back that nothing was wrong. I also did blood tests to see if I'm anemic still and if I'm having issues with B12, which could explain a lot of the pains and muscle weakness and I'm waiting on those results. If those come back normal then something needs to be done with my medication. I already got adjusted from 125 to 175, but the problem with Synthroid is that it's only a T4 medication and if your body can't make T4 to T3 then you need to take something else on top of Synthroid or switch to something like Armour which is a T4/T3 combo. I'm waiting to see my Endocrinologist next month to ask for blood tests on Free T4, Free T3, and Reverse T3 instead of the TSH test. This would help adjust your medications better and this would let your doctor see if your body is having issues with T4 converting into T3.
Some people on the Facebook pages on Thyroid diseases and cancer that I read have said it's been hard to find doctors that will look into T3 issues or prescribe Armour to their patients due to these doctors being misinformed. One person said they had to switch to five to six different doctors until someone listened to them that Synthroid didn't work for them and wanted to try Armour. The main problem is there isn't a lot of research going on Thyroid diseases and issues or at least it doesn't seem as some doctors are just playing guessing games with the patients' diagnoses and medication, not all doctors, but what I've heard from others it has happened. I've heard of people that never get back to close to being their normal self after cancer and this has been going on for 10 to 30 years for some of them.
I think the reason there isn't as much research is because there is a "cure" for thyroid cancer and some of the other diseases and illnesses like hypothyroidism and hyperthyroidism. Though with so many people still having issues and going years to doctors in hopes to one day feel normal at least for awhile... we need to continue this research and find a better solution. Also with more people developing thyroid cancer, we need to figure out why it's on the rise... what has changed to cause this? It can't be always genetics since it seems more people are becoming the first one in the family to get it like myself. There needs to be also more awareness for this cancer and also the other diseases and illnesses that can come from the gland.
I have learned throughout all of this that I have to do my own research and look to other people that have already experienced this and have been for years to see what I need to do. I guess, some people do this anyways, but I'm used to doctors knowing what they are talking about. The research has helped me a lot with my family doctor and she listens to me when I request medication like a muscle relaxer for my neck or blood tests to see if my anemia has gotten worse or if I have an issue with B12.
To the people that never have checked their thyroid or their children's, if you see signs of hypothyroidism or hyperthyroidism, which there is a long list since the thyroid affects a lot of systems in your body... get your blood tested for Free T4, Free T3, Reverse T3, and TSH. It might explain some issues that you have been having and nothing seems to make it better. Also doesn't hurt to get your thyroid checked every once in awhile since Thyroid cancer doesn't always show signs and symptoms.
Oh and also... I posted a video on youtube: My Dealing with Thyroid Cancer
Anyways, I've been dealing with feeling weak in my muscles (mainly my legs), I walk slower now, I can't deal with the cold, my hip hurts, I'm having chest pains, head pains, right side of my neck is swollen, I'm having issues breathing, overly emotional at times because of medication, and anxiety. I had an x-ray on my hip due to the pain and issues with laying down at times, but the x-ray came back that nothing was wrong. I also did blood tests to see if I'm anemic still and if I'm having issues with B12, which could explain a lot of the pains and muscle weakness and I'm waiting on those results. If those come back normal then something needs to be done with my medication. I already got adjusted from 125 to 175, but the problem with Synthroid is that it's only a T4 medication and if your body can't make T4 to T3 then you need to take something else on top of Synthroid or switch to something like Armour which is a T4/T3 combo. I'm waiting to see my Endocrinologist next month to ask for blood tests on Free T4, Free T3, and Reverse T3 instead of the TSH test. This would help adjust your medications better and this would let your doctor see if your body is having issues with T4 converting into T3.
Some people on the Facebook pages on Thyroid diseases and cancer that I read have said it's been hard to find doctors that will look into T3 issues or prescribe Armour to their patients due to these doctors being misinformed. One person said they had to switch to five to six different doctors until someone listened to them that Synthroid didn't work for them and wanted to try Armour. The main problem is there isn't a lot of research going on Thyroid diseases and issues or at least it doesn't seem as some doctors are just playing guessing games with the patients' diagnoses and medication, not all doctors, but what I've heard from others it has happened. I've heard of people that never get back to close to being their normal self after cancer and this has been going on for 10 to 30 years for some of them.
I think the reason there isn't as much research is because there is a "cure" for thyroid cancer and some of the other diseases and illnesses like hypothyroidism and hyperthyroidism. Though with so many people still having issues and going years to doctors in hopes to one day feel normal at least for awhile... we need to continue this research and find a better solution. Also with more people developing thyroid cancer, we need to figure out why it's on the rise... what has changed to cause this? It can't be always genetics since it seems more people are becoming the first one in the family to get it like myself. There needs to be also more awareness for this cancer and also the other diseases and illnesses that can come from the gland.
I have learned throughout all of this that I have to do my own research and look to other people that have already experienced this and have been for years to see what I need to do. I guess, some people do this anyways, but I'm used to doctors knowing what they are talking about. The research has helped me a lot with my family doctor and she listens to me when I request medication like a muscle relaxer for my neck or blood tests to see if my anemia has gotten worse or if I have an issue with B12.
To the people that never have checked their thyroid or their children's, if you see signs of hypothyroidism or hyperthyroidism, which there is a long list since the thyroid affects a lot of systems in your body... get your blood tested for Free T4, Free T3, Reverse T3, and TSH. It might explain some issues that you have been having and nothing seems to make it better. Also doesn't hurt to get your thyroid checked every once in awhile since Thyroid cancer doesn't always show signs and symptoms.
Oh and also... I posted a video on youtube: My Dealing with Thyroid Cancer
Monday, December 3, 2012
Surgery Day
The morning of my surgery we were supposed to leave at 6:00am, but left 15 minutes late. We still should have gotten to the hospital in time, but there was an accident on the highway. We eventually got to the hospital and then got lost in the building and had to ask for directions to where I needed to go. I finally got to the area I needed to fill out paperwork and that's when my parents got there. After that I went to, if I remember correctly, One Day Surgery area, and got my waiting room and my gown.
Most of the day is now hazy because of the drugs, stress, and nervousness. I remember them taking my blood and giving me stuff through an IV. Justin held my hand throughout all of that. The next thing I remember is being pushed down a hallway to my surgery for a minute and then falling back to sleep and then waking up for a few minutes when they pushed my bed into the surgical room.
My surgery was three hours long and after it I woke up from what felt like someone tugging on the nose oxygen tube around my ears. Since my throat was so dry I asked for something to drink, but the only thing I could have at the time was ice cubes. I was so out of it that my boyfriend feed me the ice cubes with a spoon and from what my family told me I was being demanding on the sizes of the cubes. I vaguely remember people telling me to go back to sleep if I'm so tired, but I kept saying I wanted to stay up and talk to everyone. I guess, I'm very stubborn when I still have the effects of anesthesia.
They told my parents and boyfriend to go to my overnight room and they'll bring me upstairs. It seemed they forgot about me since it took them hours to get someone to take me to my room. Eventually they got me to my room and I was met with my parents and Justin. His parents were in the waiting room as only so many people can stay in the room. It was weird sitting up in a bed for me, especially with this HUGE wrapping around my neck and a tube with a plastic bag attached to it coming out from underneath the wrapping that was collecting blood and stuff from inside in my neck. I had to sleepover night with this thing, which was weird.
I talked to everyone and then they left around 9:00pm as visiting hours were over. Most of the night was fine for me as my roommate was nice and quiet. It was funny since the nurses kept coming in for her since they needed to move her, so they were getting all prepared for it... the roommate was all concern about them waking me up. The one nurse said she was sorry for waking me up and I told her it was okay. At some point they moved her to her new room on a different floor and I was alone for like an hour or two. I took this time to call my mom and Justin and figure out what time everyone was coming.
The woman in the room next to me would not stop yelling and causing problems... walking in the hall making noise, not caring if she's waking up other patients. In the morning Justin told me that she was doing that a lot while he was visiting me. She just would not shut up and kept going on and on about what her doctor said this and that,who did not work at that hospital and was not seeing what the doctors and interns where seeing.
Anyways, in the morning some interns came in to take the huge wrapping off of my neck, it seemed the one was showing some of them how to go about it, and the one unwrapping it seemed happy that I had short hair. I purposely got my hair cut for my surgery since I didn't want my hair get stuck in stitches. They also had to take the tubing out, which oddly didn't hurt, but it felt so weird. It turned out they super glued my neck closed instead of using stitches.
Justin came to the hospital first and was able to order my breakfast since it was still hard for me to talk. My nurse came in and told us they will call for someone to get me a wheelchair, so I can leave. Shortly after that my mom came to the room, but my dad was on the phone interviewing someone for a job, which had been scheduled in advance, so he got stuck with it. My parents had gotten me a candle from Bath and Body Works that was scent specially for stress relief and then a nice, fake bamboo plant. We waited and waited for a wheelchair for about an hour to two, but no one came with one. My dad was leaving that day to go back to Texas, which meant he had to drop my mom off at my sister's and then get to the airport, so they had to leave.
Eventually the main nurse that was dealing with me walked passed my room and noticed I was still there, she seemed upset I was still there too. She said she will ask again for someone to get me a wheelchair and help me out, but a nurse behind her said she could do it since I had been waiting for so long. The nurse was nice enough to push me to the parking garage, but not in the garage... I'm not sure if this is normal or not, oh well. Justin was able to help me walk into the garage and to the car, it wasn't that hard or at least I didn't think so.
I thought maybe the hard part was over with and that now with my new medication it would get me back to normal, but now I'm noticing this is only the beginning.
Most of the day is now hazy because of the drugs, stress, and nervousness. I remember them taking my blood and giving me stuff through an IV. Justin held my hand throughout all of that. The next thing I remember is being pushed down a hallway to my surgery for a minute and then falling back to sleep and then waking up for a few minutes when they pushed my bed into the surgical room.
My surgery was three hours long and after it I woke up from what felt like someone tugging on the nose oxygen tube around my ears. Since my throat was so dry I asked for something to drink, but the only thing I could have at the time was ice cubes. I was so out of it that my boyfriend feed me the ice cubes with a spoon and from what my family told me I was being demanding on the sizes of the cubes. I vaguely remember people telling me to go back to sleep if I'm so tired, but I kept saying I wanted to stay up and talk to everyone. I guess, I'm very stubborn when I still have the effects of anesthesia.
They told my parents and boyfriend to go to my overnight room and they'll bring me upstairs. It seemed they forgot about me since it took them hours to get someone to take me to my room. Eventually they got me to my room and I was met with my parents and Justin. His parents were in the waiting room as only so many people can stay in the room. It was weird sitting up in a bed for me, especially with this HUGE wrapping around my neck and a tube with a plastic bag attached to it coming out from underneath the wrapping that was collecting blood and stuff from inside in my neck. I had to sleepover night with this thing, which was weird.
I talked to everyone and then they left around 9:00pm as visiting hours were over. Most of the night was fine for me as my roommate was nice and quiet. It was funny since the nurses kept coming in for her since they needed to move her, so they were getting all prepared for it... the roommate was all concern about them waking me up. The one nurse said she was sorry for waking me up and I told her it was okay. At some point they moved her to her new room on a different floor and I was alone for like an hour or two. I took this time to call my mom and Justin and figure out what time everyone was coming.
The woman in the room next to me would not stop yelling and causing problems... walking in the hall making noise, not caring if she's waking up other patients. In the morning Justin told me that she was doing that a lot while he was visiting me. She just would not shut up and kept going on and on about what her doctor said this and that,who did not work at that hospital and was not seeing what the doctors and interns where seeing.
Anyways, in the morning some interns came in to take the huge wrapping off of my neck, it seemed the one was showing some of them how to go about it, and the one unwrapping it seemed happy that I had short hair. I purposely got my hair cut for my surgery since I didn't want my hair get stuck in stitches. They also had to take the tubing out, which oddly didn't hurt, but it felt so weird. It turned out they super glued my neck closed instead of using stitches.
Justin came to the hospital first and was able to order my breakfast since it was still hard for me to talk. My nurse came in and told us they will call for someone to get me a wheelchair, so I can leave. Shortly after that my mom came to the room, but my dad was on the phone interviewing someone for a job, which had been scheduled in advance, so he got stuck with it. My parents had gotten me a candle from Bath and Body Works that was scent specially for stress relief and then a nice, fake bamboo plant. We waited and waited for a wheelchair for about an hour to two, but no one came with one. My dad was leaving that day to go back to Texas, which meant he had to drop my mom off at my sister's and then get to the airport, so they had to leave.
Eventually the main nurse that was dealing with me walked passed my room and noticed I was still there, she seemed upset I was still there too. She said she will ask again for someone to get me a wheelchair and help me out, but a nurse behind her said she could do it since I had been waiting for so long. The nurse was nice enough to push me to the parking garage, but not in the garage... I'm not sure if this is normal or not, oh well. Justin was able to help me walk into the garage and to the car, it wasn't that hard or at least I didn't think so.
I thought maybe the hard part was over with and that now with my new medication it would get me back to normal, but now I'm noticing this is only the beginning.
Saturday, December 1, 2012
Two Days Before Surgery
TO NOTE: Some of this may not be exactly how it happened as the memory can play tricks on you.... so yeah.
The only thing at that moment that I was looking forward to was seeing my parents of the Monday before my surgery. My mom was talking about once they land they were thinking about having lunch at this local place called Little York Tavern. They used to live in the area and were missing this place, so they really wanted to have it while they were up here. So I plotted what time we needed to get up to meet them at the airport to surprise them and everything, but by the time we left we were afraid that we couldn't meet them at the airport. I had to figure out a new plan, so I started texting my parents as soon as I found out they landed and see if they were going to do lunch still and also what kind of car they were renting. We got to the food place, parked in their lot far enough from the entrance to not be seen, and waited... waited... and waited until we saw them walking into the tavern. I waited until they got through the door and then we exited the car, quickly making our way in. My parents, as usual, went into the bar area to sit and I followed behind them not making a sound. They were about to sit down and my dad was facing me and I quickly motioned him to not notice me, so I can surprise my mom, who's back was still facing me. I believe I tapped her shoulder, so she would turn around and she was shocked to see me. We all hugged, well minus Justin as he's not the hugging type, and we all sat down for lunch. It was nice and made my day to see my parents just with Justin and me early in the day.
Now I think after that my parents went to their hotel and we went back home, so we can all nap for awhile and get ready for that night as my sister was going to go out to dinner with all of us. The last time I saw my sister was once during my summer classes and before that was two years... sadly, I've been trying to see her and talk to her, but she's never able to because she's working or partying with friends. The last time I saw her now was October 5th as she dropped off my mom, so we could take her to the airport and only saw her for like two, maybe three minutes.
I called for reservations for P.F. Changs and then went to Walmart to get my dad a birthday cake since my surgery day is on his birthday and also went to the Hallmark at the Dayton Mall to buy his birthday card. After that we went to the restaurant and waited to be seated as we were the first ones there. Some time after, not by much, my sister and parents showed up and sat down in the booth. The dinner was nice though the conversation seemed mostly about my sister since she never really acknowledge that the main reason our parents were there was because of me and my cancer. At times I felt like I was forgotten about within the conversation and it kinda hurt me... though luckily my mom was sitting next to me and was talking to me at times. I know Justin was more annoyed than me about the situation at dinner that night. I understood that she hadn't seen our parents for along time too, but it would have been nice if she realized they were there mainly for me. I don't even remember a time at the table she talked to me about my situation or a time that we talked about something other than her.
After dinner Justin and I went over to the hotel that they were staying at, so we can again spend time with it just being the four of us. I had brought with me the prayer scarf my Godmother (my mom's best friend from 5th grade) had asked her church to make me (it's so pretty I really need to take a picture of it) and the Precious Moment statue I was going to give my mom for Christmas, I figured to give it to her then since I didn't know when I would be down next and also figured my parents can fly it down more safely than I could. I think we spent four hours or more just chatting with them. It felt like I never moved out and it felt so nice that I didn't want to leave the room.
The next day mom and I planned to go to Buffalo Wild Wings to have lunch with just the two of us like old times. Justin was going to drop me off at the hotel room and then my dad was going to drop us off at the food place while he did his own thing. Before dropping us off though my dad asked me to take him to my workplace, Sam's Club, to get something and also I had to to get paperwork from there, I believe. I can't remember now. I told some of my co-workers of what was going on. It was nice to see my fellow workers concern over my health and well-being and hearing their get well wishes.
Then my dad dropped us off to the food place and sat in the booths like usual... Justin and I go to this Buffalo Wild Wings at least once or twice a week, so everyone there pretty much knows us. I think we spent two to three hours there since it had been a VERY long time my mom and I were able to do this. Also it was nice to not have the guys around, nothing wrong with them, but sometimes the topics you want to get into or stay on never happen, especially when it comes to my dad (he changes topic to topic so fast). At this point I was telling my mom how much I wanted my dad to stay an extra day, so he can see me the rest of the day of my surgery and also the next day when I'm more awake. I even talked about Justin and I paying a fourth each of the changing flight price. At this time she said she would try talking to him later about it.
Once dad picked us up and Justin met up with us at the hotel, we went to my sister's place, so my parents can see where she lives and her cat. Then we went to the TGI Friday's in her area for dinner and again dinner was okay, but the conversation wasn't the greatest. My dad was playing around on his iPhone and my sister was mainly talking about her situation. This is now the day right before my surgery, so I'm getting nervous and upset. Luckily Justin noticed this and started comforting me by scratching my head (this usually calms me down) and also my mom and dad noticed, asking if I was okay. I started crying at one point and Justin just hugged me, letting me cry on him.
After dinner... we went back to the hotel (minus my sister) and at one point my mom talked to my dad about staying the extra day. From what I remember originally he said no until he heard how Justin and I were willing to help pay for him to stay the extra day including paying for the hotel stay since this showed him how much I wanted and needed him to be there. Also there was the situation of my sister being mad about dinner how all he did was being on his iPhone, so all of this made him decide to stay the extra day and planned Wednesday night to be a dinner with him, my mom, and my sister. He even went as far as booking a cheaper hotel room in the same area as they were before, so they were still closer to my sister's area (I think originally he was thinking about booking it closer to my hospital) to make it possible for them to do this, but it never happened because of my sister.
After the hotel visit, Justin and I went back home, so we could pack up and set our alarms, we had to leave the house around 6am. It took me forever to fall asleep, but eventually I did.
The only thing at that moment that I was looking forward to was seeing my parents of the Monday before my surgery. My mom was talking about once they land they were thinking about having lunch at this local place called Little York Tavern. They used to live in the area and were missing this place, so they really wanted to have it while they were up here. So I plotted what time we needed to get up to meet them at the airport to surprise them and everything, but by the time we left we were afraid that we couldn't meet them at the airport. I had to figure out a new plan, so I started texting my parents as soon as I found out they landed and see if they were going to do lunch still and also what kind of car they were renting. We got to the food place, parked in their lot far enough from the entrance to not be seen, and waited... waited... and waited until we saw them walking into the tavern. I waited until they got through the door and then we exited the car, quickly making our way in. My parents, as usual, went into the bar area to sit and I followed behind them not making a sound. They were about to sit down and my dad was facing me and I quickly motioned him to not notice me, so I can surprise my mom, who's back was still facing me. I believe I tapped her shoulder, so she would turn around and she was shocked to see me. We all hugged, well minus Justin as he's not the hugging type, and we all sat down for lunch. It was nice and made my day to see my parents just with Justin and me early in the day.
Now I think after that my parents went to their hotel and we went back home, so we can all nap for awhile and get ready for that night as my sister was going to go out to dinner with all of us. The last time I saw my sister was once during my summer classes and before that was two years... sadly, I've been trying to see her and talk to her, but she's never able to because she's working or partying with friends. The last time I saw her now was October 5th as she dropped off my mom, so we could take her to the airport and only saw her for like two, maybe three minutes.
I called for reservations for P.F. Changs and then went to Walmart to get my dad a birthday cake since my surgery day is on his birthday and also went to the Hallmark at the Dayton Mall to buy his birthday card. After that we went to the restaurant and waited to be seated as we were the first ones there. Some time after, not by much, my sister and parents showed up and sat down in the booth. The dinner was nice though the conversation seemed mostly about my sister since she never really acknowledge that the main reason our parents were there was because of me and my cancer. At times I felt like I was forgotten about within the conversation and it kinda hurt me... though luckily my mom was sitting next to me and was talking to me at times. I know Justin was more annoyed than me about the situation at dinner that night. I understood that she hadn't seen our parents for along time too, but it would have been nice if she realized they were there mainly for me. I don't even remember a time at the table she talked to me about my situation or a time that we talked about something other than her.
After dinner Justin and I went over to the hotel that they were staying at, so we can again spend time with it just being the four of us. I had brought with me the prayer scarf my Godmother (my mom's best friend from 5th grade) had asked her church to make me (it's so pretty I really need to take a picture of it) and the Precious Moment statue I was going to give my mom for Christmas, I figured to give it to her then since I didn't know when I would be down next and also figured my parents can fly it down more safely than I could. I think we spent four hours or more just chatting with them. It felt like I never moved out and it felt so nice that I didn't want to leave the room.
The next day mom and I planned to go to Buffalo Wild Wings to have lunch with just the two of us like old times. Justin was going to drop me off at the hotel room and then my dad was going to drop us off at the food place while he did his own thing. Before dropping us off though my dad asked me to take him to my workplace, Sam's Club, to get something and also I had to to get paperwork from there, I believe. I can't remember now. I told some of my co-workers of what was going on. It was nice to see my fellow workers concern over my health and well-being and hearing their get well wishes.
Then my dad dropped us off to the food place and sat in the booths like usual... Justin and I go to this Buffalo Wild Wings at least once or twice a week, so everyone there pretty much knows us. I think we spent two to three hours there since it had been a VERY long time my mom and I were able to do this. Also it was nice to not have the guys around, nothing wrong with them, but sometimes the topics you want to get into or stay on never happen, especially when it comes to my dad (he changes topic to topic so fast). At this point I was telling my mom how much I wanted my dad to stay an extra day, so he can see me the rest of the day of my surgery and also the next day when I'm more awake. I even talked about Justin and I paying a fourth each of the changing flight price. At this time she said she would try talking to him later about it.
Once dad picked us up and Justin met up with us at the hotel, we went to my sister's place, so my parents can see where she lives and her cat. Then we went to the TGI Friday's in her area for dinner and again dinner was okay, but the conversation wasn't the greatest. My dad was playing around on his iPhone and my sister was mainly talking about her situation. This is now the day right before my surgery, so I'm getting nervous and upset. Luckily Justin noticed this and started comforting me by scratching my head (this usually calms me down) and also my mom and dad noticed, asking if I was okay. I started crying at one point and Justin just hugged me, letting me cry on him.
After dinner... we went back to the hotel (minus my sister) and at one point my mom talked to my dad about staying the extra day. From what I remember originally he said no until he heard how Justin and I were willing to help pay for him to stay the extra day including paying for the hotel stay since this showed him how much I wanted and needed him to be there. Also there was the situation of my sister being mad about dinner how all he did was being on his iPhone, so all of this made him decide to stay the extra day and planned Wednesday night to be a dinner with him, my mom, and my sister. He even went as far as booking a cheaper hotel room in the same area as they were before, so they were still closer to my sister's area (I think originally he was thinking about booking it closer to my hospital) to make it possible for them to do this, but it never happened because of my sister.
After the hotel visit, Justin and I went back home, so we could pack up and set our alarms, we had to leave the house around 6am. It took me forever to fall asleep, but eventually I did.
Tuesday, November 20, 2012
Something's Wrong
My journey all started when the last weekend of July 2012 when I was having difficulty breathing for the first time in my life. It was hard to describe as I knew it wasn't a chest/lung issue, but something blocking in my neck. Also I was having more difficulties with swallowing food and liquids, but I've had that issue more of my life. Well actually the difficulty with liquids, even water, started about five years ago and anytime I experience it, it felt like the liquid in question formed into a marble, which made me refer to it now as the "marble effect".
Anyways, the breathing issue was driving me insane... like drowning and trying to swim to the surface, but unable to since *thinks* a log has trapped your leg. You are fighting to breathe, but unable to push the log off, so you can get free. I finally decided to call my doctor, but wasn't able to get in until later in the week and the breathing got worse as time went on that day, so my boyfriend took me to the hospital. They checked my chest by listening to it, ran blood test claiming they were checking my thyroid with the testing as well, and then x-ray my neck since I found a large lump on my neck (I noticed this while we were driving to the hospital). At first the one doctor said that might be normal for me, but I told him it wasn't and that it was new. They gave me a breathe therapy treatment where you breathe in this vapors from a hose connected to a machine... yeah, it didn't help at all. They said everything came back fine, but I should ask my family doctor to order an ultrasound on my neck.
I ended up getting an appointment with my family doctor on August 3rd, 2012 in the morning and told her what happened at the hospital and what I was dealing with. She gave me two options: one, to do the ultrasound or two, to see if my esophagus needed to be widen. I, of course, voted for the ultrasound and was able to go to the town over to get it done the same day. A week later I got the email from my doctor that the left side of my thyroid was enlarged with a nodule that was an inch in size and three smaller (5mm, 7mm, and 9mm) nodules on the right with all different makes.
Now let me tell you, 90% of people have nodules and most are not noticeable and aren't cancerous (and not all will become cancerous). But if you have one that's 1 cm in size, you need to get an ENT to do a fine-needle biopsy. Also if you have a nodule, even if it's small, get it checked every once in a while... like every six months (you can get your family doctor to order the ultrasound for you... it's cheaper that way). If it gets bigger in size get an ENT to look at it. To note, my largest nodule was 2.5 cm when I found it.
This was just the beginning of a major change in my life.
Anyways, the breathing issue was driving me insane... like drowning and trying to swim to the surface, but unable to since *thinks* a log has trapped your leg. You are fighting to breathe, but unable to push the log off, so you can get free. I finally decided to call my doctor, but wasn't able to get in until later in the week and the breathing got worse as time went on that day, so my boyfriend took me to the hospital. They checked my chest by listening to it, ran blood test claiming they were checking my thyroid with the testing as well, and then x-ray my neck since I found a large lump on my neck (I noticed this while we were driving to the hospital). At first the one doctor said that might be normal for me, but I told him it wasn't and that it was new. They gave me a breathe therapy treatment where you breathe in this vapors from a hose connected to a machine... yeah, it didn't help at all. They said everything came back fine, but I should ask my family doctor to order an ultrasound on my neck.
I ended up getting an appointment with my family doctor on August 3rd, 2012 in the morning and told her what happened at the hospital and what I was dealing with. She gave me two options: one, to do the ultrasound or two, to see if my esophagus needed to be widen. I, of course, voted for the ultrasound and was able to go to the town over to get it done the same day. A week later I got the email from my doctor that the left side of my thyroid was enlarged with a nodule that was an inch in size and three smaller (5mm, 7mm, and 9mm) nodules on the right with all different makes.
Now let me tell you, 90% of people have nodules and most are not noticeable and aren't cancerous (and not all will become cancerous). But if you have one that's 1 cm in size, you need to get an ENT to do a fine-needle biopsy. Also if you have a nodule, even if it's small, get it checked every once in a while... like every six months (you can get your family doctor to order the ultrasound for you... it's cheaper that way). If it gets bigger in size get an ENT to look at it. To note, my largest nodule was 2.5 cm when I found it.
This was just the beginning of a major change in my life.
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