A lot has been going on and I'm almost at the point of going insane... I'm trying hard to keep myself together. On the 14th of May I went to my second endocrinologist, who didn't seem to be able to read my pathology report or knows anything about variants. I had to tell her that they narrow my cancer down to four aggressive types, which she was like "well it says you have papillary cancer"... to which I said "Yes, the main is papillary cancer, but there are variants," which that was pretty much ignored. She also didn't understand the blood work orders and my medication adjustments. We had to explain the labs were done first and then the medication was adjusted based on those orders. She claimed based on my lab reports that it seems like the 125 mcg of Levothyroxine was close to the dosage I needed. I told her I didn't understand was my labs showed my TSH was high and I felt like crap just like I did on 175 mcg and 150 mcg.
I tried to get her to order adrenal saliva test and my full iron panel, but she refused just like the other one. She claimed that my issues might not be thyroid related, but still refuses to see if I have an adrenal problem (also in the endocrine system). These results could explain why my medication isn't working along with other symptoms I have been experiencing. I also explain to her that my family seems to have a lot of endocrine problems: kidneys, stomach, and thyroid, so it's reasonable to think I am having another endocrine problem that could be messing things up. Still got no for the tests. The thing with ordering tests is... I can order them online (really expensive though), but I have insurance and doctors that can order them for me and I am still paying for them... so what's the big deal?
She then tried to get me back on synthetic medication, which I got angry as she wouldn't do anything I wanted and she expects me to throw my body back into that crap?! She claims that the natural thyroid medication is bad for the heart and bones (actually natural thyroid medication is good for the bones, it has improved people's bone density). I felt like saying to her that sometimes heart medication can be bad for the heart as well, but are people going to stop taking needed heart medication because others had issues? No, they aren't since what works for others, doesn't always work for other people. This is why they are a lot of companies making their own version of the medications as there are many ways to make them with different fillers and such as not everyone can absorb the same medication the same way.
She also claimed that my natural thyroid medication is too high (basing this on the results from my last Levothyroxine test that was done in MARCH), but I agree, thinking it was too big of a jump as I was basing it on the UPS numbers. I was willing to lower my dosage, but not willing to change my medication. She was not happy with this and ordered the normal tests. Well I got some of my lab results today (TSH, Free T4, and Free T3)... My TSH increased (which is good since it was .020 before), but my FT4 and FT3 decreased, so I might need to increase my medication and not decrease it. Now I am wondering if it will be easy now to order my Reverse T3, adrenal saliva test, and full iron panel... probably not.
Then on Tuesday I have to go to Ohio's Department of Human Services for a two hour interview thing about work stuff. I'm just hoping my last work place sent them the paper that said I quit due to medical issues... I hope so, if not I might be screwed big time. Tuesday is also the funeral of my fiance's grandmother and I couldn't reschedule the interview since there was no information on the paper about it. On top of that, we are leaving this Friday for 2.5 weeks, so yeah... had to reschedule it.
Then starting today I am in Summer classes... yay, lol. Luckily the full semester I only have two classes, but the second half there is a third added to it. I should do fine this semester as it doesn't seem hard, just a lot of work in the one class. Oh! Spring semester I got a 4.0, which makes me be on the Dean's List a second time and making my overall GPA to be a 3.7, yay!
When I come back from my trip, I'm going to talk to one of the advisers from the school I went to transfer to talk about my Bachelor degree stuff. I am thinking of skipping my Associates and go straight into my Bachelor's to save some time and some money. Just have to see what I find out from the school before I make that decision.
Showing posts with label doctor. Show all posts
Showing posts with label doctor. Show all posts
Monday, May 20, 2013
Friday, April 26, 2013
Bad News/Good News
I know it's been awhile again that I posted on here since I've been busy with school and trying to figure out my job stuff. I had left my one job due to lack of hours and also lack of understanding my health issues by some of my supervisors, which caused my anxiety to get bad. I went back to a job I had one and a half years ago and loved working there, I was so excited to work there again. I guess, I never realized the job was actually harder than I thought. For those that don't know, it's a sales associate job at a department store, doesn't seem hard I know, but it is on the body. I was crying after being up on my feet for two to three hours with no break (you get a break if you work five hours) and my arms were hurting from lifting so many clothes. I started this job at the beginning of the month and it makes me so depressed that I had to leave so soon. Sadly since I had to end up job without a two weeks notice (there was no way I could handle it for another two weeks, especially with the eight hour shifts), they will not hire me based on company policy even though it's because of a health issue. I actually broke down crying when I was telling them, but it's out of HR's hand because it's the company policy.
The plan is to go jobless for awhile until my health gets better, which hopefully will once I see my new Endocrinologist and I start (hopefully again) getting better treatment. I am pretty sure that my adrenal is one of the reasons my reverse T3 is so high, so that needs to be taken care of so the medication can work for me.
The 24th of April was my 28th birthday, which was pretty depressing for me not only because I was working, but because where I am in life. I'm not married though I do have a boyfriend, I don't have kids nor one on the way, I don't have a degree as I just started college last year, I don't have a car or a place of my own, and so on... and yet I'm close to being 30 years old. On top of that I don't know if I still have cancer, I still don't have my old life back or close to and I continue to keep getting worse.
Okay... some good news, so far I am still make straight A's in school and running for Publicity Director for Phi Theta Kappa. When I filled out FAFSA I said I wanted to apply for work-study, so hopefully I can get that in hopes to be able to pay my bills. I have my school reunion on June 1st in Austin, TX that I plan to go to and at the same time visit friends and family. I'm going to try posting on here more often now that I am jobless, but also work on comic and game idea outlining and scripting, so I can get closer to actually start working on the final product.
That is all for now...
The plan is to go jobless for awhile until my health gets better, which hopefully will once I see my new Endocrinologist and I start (hopefully again) getting better treatment. I am pretty sure that my adrenal is one of the reasons my reverse T3 is so high, so that needs to be taken care of so the medication can work for me.
The 24th of April was my 28th birthday, which was pretty depressing for me not only because I was working, but because where I am in life. I'm not married though I do have a boyfriend, I don't have kids nor one on the way, I don't have a degree as I just started college last year, I don't have a car or a place of my own, and so on... and yet I'm close to being 30 years old. On top of that I don't know if I still have cancer, I still don't have my old life back or close to and I continue to keep getting worse.
Okay... some good news, so far I am still make straight A's in school and running for Publicity Director for Phi Theta Kappa. When I filled out FAFSA I said I wanted to apply for work-study, so hopefully I can get that in hopes to be able to pay my bills. I have my school reunion on June 1st in Austin, TX that I plan to go to and at the same time visit friends and family. I'm going to try posting on here more often now that I am jobless, but also work on comic and game idea outlining and scripting, so I can get closer to actually start working on the final product.
That is all for now...
Saturday, March 9, 2013
Do Your Research!!!!
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.
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.
Sunday, February 3, 2013
Rant
So it's been a month since I last posted in my blog and sorry about that. On January 7th, I started up my spring semester and this time I think I over did it with my classes as I have four classes with each having three credit hours. My classes for this semester are Cultural Anthropology, Foundation of Business, English 2, and Computer Concepts and Applications. Lately I haven't had much me time, especially since last week and this week I'm visiting family while I have a lot of homework. I should be reading right now, but figured I let people know that read this that I am still here and alive.
So... what's been going on with my health lately? Last month I went to see my Endocrinologist for the first time and also went to my ENT to see my results from my blood work. My TSH was at .026, so my ENT lowered my synthroid to 150 mcg and the chest pains have lessen, but I'm still having breathing issues and I can't take deep breaths without it hurting. My Thyroglobulin went from .4 in November to .5 in December, which isn't a huge worry since sometimes they will miss thyroid tissues that try to rebuild and also I swear I have a thyroglossal duct cyst under my chin, which might be making the numbers go up. I got a copy of my pathology report from my surgery and turns out they don't know exactly what kind of cancer I had, but narrowed it down to four rare and uncommon types with one of them being Tall-cell thyroid cancer. Tall-cell doesn't always react to Radioactive Iodine (RAI) treatment, which isn't good, of course, but because there's a chance of it my Endo wants me to have RAI (though she kept saying my numbers are good). I was told I didn't need to worry about my thyroglobulin numbers until they hit 1 or 2, so I'm not doing RAI until that happens.
Oh... and one thing that pissed me off about my Endo... She was talking about doing TSH and Free T4 tests on me and I asked her about Free T3 and Reverse T3 testing. Her answer to T3 was that cancer patients don't need T3. WTF!? I had to explain to her that 125, 175, and 150 of the synthroid were doing nothing for me and they all felt the same. She was surprised and gave me a small dosage, 5 mcg, of Cytomel, which I'm supposed to take once a day, and still wouldn't do a blood test. The problem with T3 medication is that it only lasts you for four hours a day and then after that, you are just relying on your body. I can feel the difference when my body has the T3 medication in it, especially at the two hour mark, but once it's gone I feel horrible. I know the 5 mcg is too low for me since there isn't as big of a difference between how I'm now normally am and when I have the medication. Also when I brought up T3 right away she said she wouldn't put me on Armour... so red flag there, so I'm going to be looking for a new Endo and when I talk to the front desk my first question is 'are they known for giving out Armour or do they refuse to give people that?'
I see my ENT in March, so I'll be asking him to do a Free T3 and Reverse T3 blood test and if he won't I will go to my PCP since I know she'll do it for me. Oh speaking of blood tests... I've been trying to get my mom and sister to check out their thyroids since they have a lot of signs and issues that can be related to the thyroid. Well my sister goes to see her doctor, but I guess, she saw the nurse practitioner instead... my sister asked about checking her thyroid and the NP just gave her a request for the lab to do TSH. I got angry. I think I was yelling about it outside of the building over it. TSH alone does crap to see if there is a thyroid issue and that's basic common sense for doctors even my PCP and her nurse know that. The results from TSH, Free T3, and Free T4 are compared to find out for sure what's wrong with a patient or if they need more testing done for like auto-immune diseases. Justin understood why I was so angry, but my mom and sister were like 'If something shows up on the TSH test they will probably do more testing'... I kept trying to explain to them that's not how it works since TSH is NOT checking the thyroid, but the pituitary gland and its reactions to the how much of your hormones the thyroid is producing and even this test alone can show things are okay when they aren't.
Okay.. I think that's enough for today as I really, really need to do school work.
So... what's been going on with my health lately? Last month I went to see my Endocrinologist for the first time and also went to my ENT to see my results from my blood work. My TSH was at .026, so my ENT lowered my synthroid to 150 mcg and the chest pains have lessen, but I'm still having breathing issues and I can't take deep breaths without it hurting. My Thyroglobulin went from .4 in November to .5 in December, which isn't a huge worry since sometimes they will miss thyroid tissues that try to rebuild and also I swear I have a thyroglossal duct cyst under my chin, which might be making the numbers go up. I got a copy of my pathology report from my surgery and turns out they don't know exactly what kind of cancer I had, but narrowed it down to four rare and uncommon types with one of them being Tall-cell thyroid cancer. Tall-cell doesn't always react to Radioactive Iodine (RAI) treatment, which isn't good, of course, but because there's a chance of it my Endo wants me to have RAI (though she kept saying my numbers are good). I was told I didn't need to worry about my thyroglobulin numbers until they hit 1 or 2, so I'm not doing RAI until that happens.
Oh... and one thing that pissed me off about my Endo... She was talking about doing TSH and Free T4 tests on me and I asked her about Free T3 and Reverse T3 testing. Her answer to T3 was that cancer patients don't need T3. WTF!? I had to explain to her that 125, 175, and 150 of the synthroid were doing nothing for me and they all felt the same. She was surprised and gave me a small dosage, 5 mcg, of Cytomel, which I'm supposed to take once a day, and still wouldn't do a blood test. The problem with T3 medication is that it only lasts you for four hours a day and then after that, you are just relying on your body. I can feel the difference when my body has the T3 medication in it, especially at the two hour mark, but once it's gone I feel horrible. I know the 5 mcg is too low for me since there isn't as big of a difference between how I'm now normally am and when I have the medication. Also when I brought up T3 right away she said she wouldn't put me on Armour... so red flag there, so I'm going to be looking for a new Endo and when I talk to the front desk my first question is 'are they known for giving out Armour or do they refuse to give people that?'
I see my ENT in March, so I'll be asking him to do a Free T3 and Reverse T3 blood test and if he won't I will go to my PCP since I know she'll do it for me. Oh speaking of blood tests... I've been trying to get my mom and sister to check out their thyroids since they have a lot of signs and issues that can be related to the thyroid. Well my sister goes to see her doctor, but I guess, she saw the nurse practitioner instead... my sister asked about checking her thyroid and the NP just gave her a request for the lab to do TSH. I got angry. I think I was yelling about it outside of the building over it. TSH alone does crap to see if there is a thyroid issue and that's basic common sense for doctors even my PCP and her nurse know that. The results from TSH, Free T3, and Free T4 are compared to find out for sure what's wrong with a patient or if they need more testing done for like auto-immune diseases. Justin understood why I was so angry, but my mom and sister were like 'If something shows up on the TSH test they will probably do more testing'... I kept trying to explain to them that's not how it works since TSH is NOT checking the thyroid, but the pituitary gland and its reactions to the how much of your hormones the thyroid is producing and even this test alone can show things are okay when they aren't.
Okay.. I think that's enough for today as I really, really need to do school work.
Sunday, January 6, 2013
Eventful?
This past week and this weekend has had it's up and downs... understandably, I believe. This coming Monday (tomorrow) is the day I find out if I still have cancer and then the following Wednesday is the day I learn if I need to have Radioactive Iodine treatment (RAI). To find this out, I had to do a blood test in November, which is what we will base all of my future blood work to and a blood test in December. The two will be compared and see if my numbers are decreasing or increasing. Decreasing is good in this case as my body shouldn't be seeing any thyroid cells and my TSH was high (hypothyroid), so that needs to lower, too.
The other reason for my Monday appointment was to adjust my medication (if needed) and the last time he also based this on how I felt. Well Wednesday morning one of his nurses called to tell me they were lowering it, okay... I don't feel better and I feel the same as I did on the 125 (was on 175... now on 150)... so why is this happening? The hospital my ENT works at allows patients to get online accounts to see their results in their account... he hasn't approved anything to be placed on there, not even my TSH results. Of course, I'm sitting here wondering 'Do I still have cancer?' 'Has it spread?' and then I tell myself everything will be fine... it's probably nothing. I try to not over think it... but at times I can't, which is driving me insane!
Other than that, later today I'm doing an webcam interview with some students that are doing a report on cancer. They posted their request on reddit and I replied saying I was up for it. I did it because it's a cancer that many people don't know about, which is bad since it seems like more and more people are getting it recently. So this will be interesting for me to do since I don't normally like talking on the phone with people I don't know (I used to not mind... but yeah) and be put on the spot.
Then tomorrow I am starting my spring semester of college and taking four classes this time. I can't wait! I'm so excited (odd, I know)! I'm taking my English 2, an anthropology class, a computer class, and foundation of business, so it should be easy-ish this semester. My goal is deal's list again!
The other reason for my Monday appointment was to adjust my medication (if needed) and the last time he also based this on how I felt. Well Wednesday morning one of his nurses called to tell me they were lowering it, okay... I don't feel better and I feel the same as I did on the 125 (was on 175... now on 150)... so why is this happening? The hospital my ENT works at allows patients to get online accounts to see their results in their account... he hasn't approved anything to be placed on there, not even my TSH results. Of course, I'm sitting here wondering 'Do I still have cancer?' 'Has it spread?' and then I tell myself everything will be fine... it's probably nothing. I try to not over think it... but at times I can't, which is driving me insane!
Other than that, later today I'm doing an webcam interview with some students that are doing a report on cancer. They posted their request on reddit and I replied saying I was up for it. I did it because it's a cancer that many people don't know about, which is bad since it seems like more and more people are getting it recently. So this will be interesting for me to do since I don't normally like talking on the phone with people I don't know (I used to not mind... but yeah) and be put on the spot.
Then tomorrow I am starting my spring semester of college and taking four classes this time. I can't wait! I'm so excited (odd, I know)! I'm taking my English 2, an anthropology class, a computer class, and foundation of business, so it should be easy-ish this semester. My goal is deal's list again!
Saturday, December 22, 2012
Supposedly Normal
So... with the chest pains and breathing issues, I think I finally figured out what's wrong: pneumonia. There's a likely chance that I got fluid in my lungs during my surgery and now months waiting to see if these pains and breathings will go away, it has now became an infection... so in other words, pneumonia. I have the nausea, bowel issues, the fever, the weakness, the shaking (at times), breathing and swallowing issues, fast heart rate, and chest pains, especially when I breath in. I was suppose to go to the hospital yesterday, but since Justin's final for school was yesterday, we had to wait until he was done... then his mom took the car to go to work herself. I had to wait until today to go, so now I'm waiting for him to wake up... take a shower and then we can leave.
Well.. since I never got to finish this post when I originally started it... I'm just going to continue on from here. I'm now back from the hospital (I went there around 1pm and left at 3:30pm on Thursday) and they found nothing wrong. We did blood work and a CT scan and with those it showed I had no blood clot and no pneumonia, which I figured I had. The only thing that did show up was that I had a very small area in the upper part of my left lung, but they said it shouldn't be what's causing my issues. So what is? I have to follow up with my family care doctor in four days (actually in five since in four days would be Christmas) and I have no clue what else we are going to do. I'm at a lost. I love how the paper they gave me when I was leaving said to get immediate care if I'm having shortness of breath and I'm already dealing with it. I also wasn't too happy when they gave me the paper and let me go... I wasn't able to read it before I got released and the doctor didn't let me know this information either, for the next few days I'm suppose to avoid doing any physical activities that causes my chest pain to get worse. I work at Sam's Club as a cashier! Everything I do will cause it to be worse... I needed a real doctor's note to give to work to excuse me from being absent.
I already called off four days this month.... to note, I only can work two days a week right now, so I have been scheduled five days so far not counting this Saturday. I can't miss anymore days, but if I go to work I'm afraid I will collapse at work from the chest pain and not being able to breath. So I don't what to do and I feel like crying. I went to bed around 9:30-ish and woke up at 4am with feeling hungry and having horrible chest pains, but since I was hungry I had to eat something so decided on some chips. With opening up the bag, it brought tears to my eyes from the pain and then eating somehow made it worse and also made my stomach sick. I haven't been able to eat much this week because I keep getting sick to my stomach and then my chest starts hurting too.
I want my life back!
Well.. since I never got to finish this post when I originally started it... I'm just going to continue on from here. I'm now back from the hospital (I went there around 1pm and left at 3:30pm on Thursday) and they found nothing wrong. We did blood work and a CT scan and with those it showed I had no blood clot and no pneumonia, which I figured I had. The only thing that did show up was that I had a very small area in the upper part of my left lung, but they said it shouldn't be what's causing my issues. So what is? I have to follow up with my family care doctor in four days (actually in five since in four days would be Christmas) and I have no clue what else we are going to do. I'm at a lost. I love how the paper they gave me when I was leaving said to get immediate care if I'm having shortness of breath and I'm already dealing with it. I also wasn't too happy when they gave me the paper and let me go... I wasn't able to read it before I got released and the doctor didn't let me know this information either, for the next few days I'm suppose to avoid doing any physical activities that causes my chest pain to get worse. I work at Sam's Club as a cashier! Everything I do will cause it to be worse... I needed a real doctor's note to give to work to excuse me from being absent.
I already called off four days this month.... to note, I only can work two days a week right now, so I have been scheduled five days so far not counting this Saturday. I can't miss anymore days, but if I go to work I'm afraid I will collapse at work from the chest pain and not being able to breath. So I don't what to do and I feel like crying. I went to bed around 9:30-ish and woke up at 4am with feeling hungry and having horrible chest pains, but since I was hungry I had to eat something so decided on some chips. With opening up the bag, it brought tears to my eyes from the pain and then eating somehow made it worse and also made my stomach sick. I haven't been able to eat much this week because I keep getting sick to my stomach and then my chest starts hurting too.
I want my life back!
Monday, December 17, 2012
Continuing with Life
So I just finished my semester of college and quite proud of myself since I didn't allow my cancer to take my schooling away from me. It may have delayed me in turning in my school work on time, but my teachers were understanding thankfully. I got an A in English (a miracle for me), an A in Environmental Ethics, and a C in College Algebra (which I plan to retake in the future to get my GPA up). I already signed up for Spring semester classes even though I don't know if I still have cancer and need radioactive iodine treatment... I'm not going to allow this cancer to prevent me from doing everything that I want and need to do. Though right now it's preventing me to work more hours to due the current issues I'm still having.
I did get my blood work results in the mail, but it seems my iron and B12 are fine though my B12 is a little low in the normal range, so my doctor said it wouldn't hurt to take some B12 vitamins. Though my MCH, and Carbon Dioxide (total) are both low and I'm not sure what this means, but I'm going to show the results to my ENT and Endocrinologist and see what they say. I know the carbon dioxide might explain the joint pains and the weakness I have been having though it might be a sign of liver or kidney issues. I hope not, but it's a possibility.
I had to call off of work three times already this month and hope to not have to again anytime soon, but it's hard to go to work when you're unable to put weight on your legs without falling down. I have to talk to my doctors about this when I see them next month as that's the soonest I can see them. I'm hoping to ask my Endocrinologist to put me on Armour as I don't like how Synthroid makes me feel and its side effects.
Though other than dealing with the cancer and its affects on my life, I'm looking forward of the two weeks I have off from work to go see my family and friends in Texas. I will be able to celebrate a late Christmas with them and my fiance, so I'm really happy about that. My manager was nice enough to approve it for me and Justin brought our plane tickets to see my family. I'm also excited about winter break as Justin and I will be working on our comic stuff again once he's done with school this Thursday.
There isn't much else to say that's new in my life other than this though I would like to add that I hope this blog is helping someone else out there. The main reason for this blog is for me to vent and write out my experiences, but I still hope this is helping or at least spreading the word of thyroid illnesses and diseases... and the need to take care of this gland.
I did get my blood work results in the mail, but it seems my iron and B12 are fine though my B12 is a little low in the normal range, so my doctor said it wouldn't hurt to take some B12 vitamins. Though my MCH, and Carbon Dioxide (total) are both low and I'm not sure what this means, but I'm going to show the results to my ENT and Endocrinologist and see what they say. I know the carbon dioxide might explain the joint pains and the weakness I have been having though it might be a sign of liver or kidney issues. I hope not, but it's a possibility.
I had to call off of work three times already this month and hope to not have to again anytime soon, but it's hard to go to work when you're unable to put weight on your legs without falling down. I have to talk to my doctors about this when I see them next month as that's the soonest I can see them. I'm hoping to ask my Endocrinologist to put me on Armour as I don't like how Synthroid makes me feel and its side effects.
Though other than dealing with the cancer and its affects on my life, I'm looking forward of the two weeks I have off from work to go see my family and friends in Texas. I will be able to celebrate a late Christmas with them and my fiance, so I'm really happy about that. My manager was nice enough to approve it for me and Justin brought our plane tickets to see my family. I'm also excited about winter break as Justin and I will be working on our comic stuff again once he's done with school this Thursday.
There isn't much else to say that's new in my life other than this though I would like to add that I hope this blog is helping someone else out there. The main reason for this blog is for me to vent and write out my experiences, but I still hope this is helping or at least spreading the word of thyroid illnesses and diseases... and the need to take care of this gland.
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
... and the News
After getting the news and scheduling my appointment, I tried to call my mom, but couldn't get a hold of her. This was understandable since she was on medicine that made her sleep most of the day. I then tried to call my dad and again I failed. It was 9:15am their time, so he was at work. Justin decided to take me to the Jack-in-the-Box that just opened in our state (and happened to be the first one in Ohio) that very day. This was a big deal to me since I used to live in Texas and been missing it for a long time. This was his way of calming me down, though I was calm, but also I was still in shock.
Sometime after ordering my food and sat down at a booth my dad returned my call. It was painful to tell my dad I had cancer. I wish there was a right way, a true right way to explain over the phone that you have cancer to your parent. I told my dad when my appointment was and he said he would look into plane tickets, hotel room, and talk to my sister about picking up my mom from the airport. I expressed to my dad how I wanted him to come up as well and thought it would be best for my mom if he came. For those that don't know me, I always put others before me, especially when I'm dealing with a major issue myself.
Most of the day is a blur to me now. I remember we went home and told Justin's parents the news with his dad's reaction of yelling "OH MY GOD!" I eventually told my mom, my siblings, and after getting to tell them I posted it on Facebook and Plurk so the rest of the family and friends can see the news.
When I was on the phone with my mom I learned that my dad was able to come, but was leaving the day after my surgery since he had to work. This was fine to me until the next day when I got an email from my ENT's secretary asking to move my appointment a week earlier. I quickly replied asking why we need to move it and explain my parents already bought their tickets to fly up from Texas. It turned out that someone had the cancer far worse than me and needed a 12 hour surgery and she asked me if we could move it back a day. I was not going to block someone from having surgery, especially someone that needed it more than me and I said I was fine with moving my surgery back a day.
My parents were coming up on Monday, my dad was leaving the Wednesday which is now my surgery date and my mom was leaving Friday. I told my parents the news and my dad went to see about changing his leave date to Thursday, but was going to cost too much. My parents are dealing with a lot of money issues from their move, so I understood, so no judging people.
The next week and a half was spent with Justin and me preparing for the surgery... getting me clothes that would be easier for me to put on afterwards, food to eat, a couch pillow with arms, and probably other things that I needed. I also spent a lot of time on the internet on support group sites reading about other people's experience and talking to them. Throughout this week I was mostly fine, but it wasn't until the week of that I started getting nervous.
Sometime after ordering my food and sat down at a booth my dad returned my call. It was painful to tell my dad I had cancer. I wish there was a right way, a true right way to explain over the phone that you have cancer to your parent. I told my dad when my appointment was and he said he would look into plane tickets, hotel room, and talk to my sister about picking up my mom from the airport. I expressed to my dad how I wanted him to come up as well and thought it would be best for my mom if he came. For those that don't know me, I always put others before me, especially when I'm dealing with a major issue myself.
Most of the day is a blur to me now. I remember we went home and told Justin's parents the news with his dad's reaction of yelling "OH MY GOD!" I eventually told my mom, my siblings, and after getting to tell them I posted it on Facebook and Plurk so the rest of the family and friends can see the news.
When I was on the phone with my mom I learned that my dad was able to come, but was leaving the day after my surgery since he had to work. This was fine to me until the next day when I got an email from my ENT's secretary asking to move my appointment a week earlier. I quickly replied asking why we need to move it and explain my parents already bought their tickets to fly up from Texas. It turned out that someone had the cancer far worse than me and needed a 12 hour surgery and she asked me if we could move it back a day. I was not going to block someone from having surgery, especially someone that needed it more than me and I said I was fine with moving my surgery back a day.
My parents were coming up on Monday, my dad was leaving the Wednesday which is now my surgery date and my mom was leaving Friday. I told my parents the news and my dad went to see about changing his leave date to Thursday, but was going to cost too much. My parents are dealing with a lot of money issues from their move, so I understood, so no judging people.
The next week and a half was spent with Justin and me preparing for the surgery... getting me clothes that would be easier for me to put on afterwards, food to eat, a couch pillow with arms, and probably other things that I needed. I also spent a lot of time on the internet on support group sites reading about other people's experience and talking to them. Throughout this week I was mostly fine, but it wasn't until the week of that I started getting nervous.
Saturday, November 24, 2012
Huey Lewis
After my first appointment with my ENT I went to have the barium swallow test on the sixth of September to see if there were any issues with my esophagus. I had to stand with a white, upright table with a white screen in front of me while drinking this thick milkshake that tasted chalky. It was not a fun experience at all. I had to even drink a more water down "milkshake" while laying down on my stomach. The last thing I had to do for the test was to swallow a barium pill, but for those that don't know me, I can't swallow pills. I've never been able to and I wish I could because liquid medicines taste horrible. Luckily the ones testing me didn't think I need to do the pill test since they couldn't see anything wrong.
By this point I should have gotten my test results, but no calls. I called the office, but was told that lab results will be backed up due to Labor Day weekend and also there was a conference in Washington D.C. Then the following week it was a game of phone tag with the office as they were trying to get a hold of me. I finally got them on the phone during one of my breaks at work and was told they would give me my results on Monday after my endoscopy test. I originally had an appointment with my ENT that day anyways.
A week and a half after my barium swallow test, I had to do the endoscopy to check further into my esophagus for muscle issues or any tissue problems within it. This was interesting and I'm not sure if it's in a good way or a bad way. Just thinking about it makes my one nostril hurt and the back of my throat taste like metal again. Pretty much I had to eat and drink different things with different textures and sizes to see the reaction of my muscles while there's a tube with a camera on the end of it that went through my nose and pushed down my throat. The one performing this was happy that Justin was there to help feed me. Some of the foods I was not pleased to see on the table: applesauce and fruit. Of course, my usual swallow issues never kicked in, but she said my muscles looked really good for my age and I didn't have acid reflux (my mother and my brother has this).
I was sent back into the waiting room to now wait for my ENT appointment that was 30 mins after the test, but was able to get in sooner. We sat in the room that we were taken into by his nurse and waited for my doctor to come in. I was trying to remain calm as I waited and also hoped that the test actually had results instead of having to do the biopsy again. Oh how I hope I did not to have to do that again. But then my doctor came into the room with some woman, I forgot now who she was, but I knew something was up. Most of what happened in the room is now foggy to me, but I do remember him telling me I have cancer and that I will need to have surgery.
Like I said in my other post I researched a lot on the cancers of thyroid, so I knew a good amount on it. I think that's why I wasn't crying, but also I think I was also still in shock over it. 27 years old and having to deal with cancer. Luckily with thyroid cancer there is a high survival rate, but still. Cancer. It was just... wow. Even right now I still can't believe it that I have cancer at such a "young" age. I remember looking at my boyfriend and laughed a little saying, "First one. First one in the family to get."
After that my doctor took me to his secretary to schedule my appointment for October 2nd (it was later moved back a day since another patient needed a 12 hour surgery), which was only a week and a half away. I couldn't believe it... I still can't believe it.
By this point I should have gotten my test results, but no calls. I called the office, but was told that lab results will be backed up due to Labor Day weekend and also there was a conference in Washington D.C. Then the following week it was a game of phone tag with the office as they were trying to get a hold of me. I finally got them on the phone during one of my breaks at work and was told they would give me my results on Monday after my endoscopy test. I originally had an appointment with my ENT that day anyways.
A week and a half after my barium swallow test, I had to do the endoscopy to check further into my esophagus for muscle issues or any tissue problems within it. This was interesting and I'm not sure if it's in a good way or a bad way. Just thinking about it makes my one nostril hurt and the back of my throat taste like metal again. Pretty much I had to eat and drink different things with different textures and sizes to see the reaction of my muscles while there's a tube with a camera on the end of it that went through my nose and pushed down my throat. The one performing this was happy that Justin was there to help feed me. Some of the foods I was not pleased to see on the table: applesauce and fruit. Of course, my usual swallow issues never kicked in, but she said my muscles looked really good for my age and I didn't have acid reflux (my mother and my brother has this).
I was sent back into the waiting room to now wait for my ENT appointment that was 30 mins after the test, but was able to get in sooner. We sat in the room that we were taken into by his nurse and waited for my doctor to come in. I was trying to remain calm as I waited and also hoped that the test actually had results instead of having to do the biopsy again. Oh how I hope I did not to have to do that again. But then my doctor came into the room with some woman, I forgot now who she was, but I knew something was up. Most of what happened in the room is now foggy to me, but I do remember him telling me I have cancer and that I will need to have surgery.
Like I said in my other post I researched a lot on the cancers of thyroid, so I knew a good amount on it. I think that's why I wasn't crying, but also I think I was also still in shock over it. 27 years old and having to deal with cancer. Luckily with thyroid cancer there is a high survival rate, but still. Cancer. It was just... wow. Even right now I still can't believe it that I have cancer at such a "young" age. I remember looking at my boyfriend and laughed a little saying, "First one. First one in the family to get."
After that my doctor took me to his secretary to schedule my appointment for October 2nd (it was later moved back a day since another patient needed a 12 hour surgery), which was only a week and a half away. I couldn't believe it... I still can't believe it.
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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