Today is the last day of "official" isolation!!! Yippee!
Starting tomorrow I can venture outside and be around people. I still have to be careful of small children and pregnant women for a while longer. And just to be on the safe side, I don't want anyone to touch me for another few days. So I'll be around people but at a safe distance. If you see me within in the next few days, please don't take it personally if I just wave from a distance. Haha!
I'm going to stick around in Jersey for another couple of days then probably head down to PA on Tuesday. That depends on if I can get in touch with my doctor and get him to prescribe me some hormones. I need em. I need em badly.
I feel great today. Maybe because I see the light at the end of the tunnel. Maybe because I got my voice back. Maybe just because the way I'm thinking is different now. Maybe all of these things.
In any case... it's going to be a good day. :)
Time for "breakfast"! Haha... man, I'm going to miss sleeping in once I go back to work.
Sunday, July 25, 2010
Saturday, July 24, 2010
Radioactive: Day 5
Last night we had a really big storm. Lightning, thunder, rain that pounded on my windows. I loved it. It was like a jolt to get me out of my funk. I also had conversations with my family.
Why am I sitting around feeling sorry for myself? I'm better than that.
I still have the feeling of nausea, fatigue, loss of appetite, etc. but those things are not going to go away right now because I'm so hypo. I can't really change that.
What I can change is how I think about it. So I'm changing.
I'm changing my outlook and I'm changing my approach. I've been looking at therapy as the enemy. It's not. It's the help. I need to help it help me. (Whoa, did I just quote Jerry Maguire?)
Here's the new game plan. More water, more food, more positivity... most of all less bitching. I'm tired of it. I think the complaining and bitching is what's taking more energy than anything else. Energy I should be using to get myself better.
So let's go, radioiodine. Let's kill this thing once and for all...
Why am I sitting around feeling sorry for myself? I'm better than that.
I still have the feeling of nausea, fatigue, loss of appetite, etc. but those things are not going to go away right now because I'm so hypo. I can't really change that.
What I can change is how I think about it. So I'm changing.
I'm changing my outlook and I'm changing my approach. I've been looking at therapy as the enemy. It's not. It's the help. I need to help it help me. (Whoa, did I just quote Jerry Maguire?)
Here's the new game plan. More water, more food, more positivity... most of all less bitching. I'm tired of it. I think the complaining and bitching is what's taking more energy than anything else. Energy I should be using to get myself better.
So let's go, radioiodine. Let's kill this thing once and for all...
Friday, July 23, 2010
Radioactive: Day 4
Today I woke up at noon.
Still the same. No voice, nauseous, lack of appetite, sore throat.
I couldn't sleep last night. I was up till 3am. I have dark circles under my eyes and I feel like crap.
I thought maybe some toast would help settle my stomach but every time I open my mouth (or the fridge), I feel like I'm going to throw up.
When I called the hospital, they told me to call my Endocrinologist. When I called my Endocrinologist, an answering service told me they're out to lunch until 2:15. 2 and a half hour lunch... nice.
I guess I'll just try again later. Until then, I'm going to try to eat something... let me rephrase that. I'm going to eat something.
I'll update later... after 2:15, I guess.
Still the same. No voice, nauseous, lack of appetite, sore throat.
I couldn't sleep last night. I was up till 3am. I have dark circles under my eyes and I feel like crap.
I thought maybe some toast would help settle my stomach but every time I open my mouth (or the fridge), I feel like I'm going to throw up.
When I called the hospital, they told me to call my Endocrinologist. When I called my Endocrinologist, an answering service told me they're out to lunch until 2:15. 2 and a half hour lunch... nice.
I guess I'll just try again later. Until then, I'm going to try to eat something... let me rephrase that. I'm going to eat something.
I'll update later... after 2:15, I guess.
Thursday, July 22, 2010
Radioactive: Day 3
I woke up hoping that my sore throat would be better... It's a little better but now I've lost my voice! Not completely but it's hoarse. I'm not sure if it's because of the radiation or because I sleep with the air conditioner on and I've caught a cold or something.
This therapy is worse than post-op. I kicked cancer's ass, but so far therapy is proving to be a much stronger opponent. Isn't therapy supposed to be helping, not hurting?
We'll see how the day progresses. Maybe my voice will loosen up after a shower and breakfast. Although, I have no appetite at all. I have to FORCE myself to eat something. I think being on this low iodine diet for over a month has given me an eating disorder (unintentionally, of course.) I'm never hungry. I eat like a bird. For the past couple of days my meals have consisted of a handful of carrots, water and maybe a piece of fruit. I eat to not faint but that's about it. Even the thought of eating regular food doesn't appeal to me... and I've been looking forward to that for WEEKS! Just thinking about food makes me nauseous and exhausted. So for now, I'm sticking to ice cold water and sour candies. Even though the sour candy is now hurting my tongue.
I'm a mess....
This therapy is worse than post-op. I kicked cancer's ass, but so far therapy is proving to be a much stronger opponent. Isn't therapy supposed to be helping, not hurting?
We'll see how the day progresses. Maybe my voice will loosen up after a shower and breakfast. Although, I have no appetite at all. I have to FORCE myself to eat something. I think being on this low iodine diet for over a month has given me an eating disorder (unintentionally, of course.) I'm never hungry. I eat like a bird. For the past couple of days my meals have consisted of a handful of carrots, water and maybe a piece of fruit. I eat to not faint but that's about it. Even the thought of eating regular food doesn't appeal to me... and I've been looking forward to that for WEEKS! Just thinking about food makes me nauseous and exhausted. So for now, I'm sticking to ice cold water and sour candies. Even though the sour candy is now hurting my tongue.
I'm a mess....
Wednesday, July 21, 2010
Radioactive: Day 2
I don't know if it's just in my head but I woke up this morning with a sore throat. It's kind of like I can feel this radioactive stuff working on whatever's left of my thyroid. Kill the bastard, Radioiodine.
Tuesday, July 20, 2010
I'm Radioactive!
After 1 month, 1 week and 6 days after my thyroidectomy, I sit here radioactive!
Last night my sister and I prepped my apartment: covered my sofa and bed, separated my clothes and saran wrapped all my kitchen handles!
No one really explained this process to me in detail. So let me break it down.
I'm not an expert, just a girl feeling her way through this ordeal.
I read a lot of forums and personal experiences online prior to going in for RAI therapy myself. From what I understand, it used to be an in-patient process. However, my hospital doesn't offer admittance for this procedure. Hence is why I had to radioactive-proof my own apartment. While it would've been nice and convenient for me to not have to contaminate my own things, it is very comforting to be in my own apartment. I just have to be very aware of what I touch.
At the hospital, I was taken to the lab to get my pregnancy test done. It's my state's law to conduct a MANDATORY pregnancy test within 48 hours prior to RAI therapy. Once the negative results came, it was a mountain of paperwork. I sat at a tiny desk signing paper after paper stating that I understand the dangers and risks of nuclear medicine and this particular procedure, agreeing to stay away from other people for 6 days, confirming that I've had all my questions answered and am willing to go ahead with RAI therapy. After the last paper was signed, I was given a glove and was told that the radiologist will place the pill in my gloved hand and I should take the pill with the glass of water provided for me. Whoa, it's serious if I need a medical glove to even handle this pill. I was scared of it. What would it look like? Would it be green and glowing or something?
I was receiving 100 mCi (millicuries) of radioactive iodine. I asked my radiologist if this dose was "a lot." She responded like a true medical professional, "it's all relative" but 100 mCi is the standard amount for thyroid cancer patients. Compared to patients with hyperthyroidism, who receive 10 - 15 mCi, it's "a lot." Compared to patients undergoing radiation for other forms of cancer, it's "pennies."
She picked up the tongs and opened a jar while standing safely behind a shield. She brought a tiny bottle towards me and I offered my gloved hand. Out came a tiny white capsule. That's it? This is the pill? It looked like nothing. I looked up to find that the radiologist had now backed away from me at least 4 giant steps. She said from afar, just take the pill with the water on the counter and then you can leave.
I popped the little white capsule in my mouth and downed it with some water. I walked out of the room to find that all the technicians stepped back as I stepped forward. I felt like I had the plague or something. They smiled politely from 5 feet away and waved.
As I walked down the hallway, I was very aware of my personal space. I tried to stay on one side of the hall. After seeing a doctor and technicians back away from me, I began to sense the seriousness of this tiny pill.
I drove myself home wearing gloves and came into my apartment with just advise to not eat for 1 hour and drink plenty of water.
What I learned:
most importantly
NO MORE OF THIS CRAZY DIET~!!!!
Last night my sister and I prepped my apartment: covered my sofa and bed, separated my clothes and saran wrapped all my kitchen handles!
No one really explained this process to me in detail. So let me break it down.
I'm not an expert, just a girl feeling her way through this ordeal.
I read a lot of forums and personal experiences online prior to going in for RAI therapy myself. From what I understand, it used to be an in-patient process. However, my hospital doesn't offer admittance for this procedure. Hence is why I had to radioactive-proof my own apartment. While it would've been nice and convenient for me to not have to contaminate my own things, it is very comforting to be in my own apartment. I just have to be very aware of what I touch.
At the hospital, I was taken to the lab to get my pregnancy test done. It's my state's law to conduct a MANDATORY pregnancy test within 48 hours prior to RAI therapy. Once the negative results came, it was a mountain of paperwork. I sat at a tiny desk signing paper after paper stating that I understand the dangers and risks of nuclear medicine and this particular procedure, agreeing to stay away from other people for 6 days, confirming that I've had all my questions answered and am willing to go ahead with RAI therapy. After the last paper was signed, I was given a glove and was told that the radiologist will place the pill in my gloved hand and I should take the pill with the glass of water provided for me. Whoa, it's serious if I need a medical glove to even handle this pill. I was scared of it. What would it look like? Would it be green and glowing or something?
I was receiving 100 mCi (millicuries) of radioactive iodine. I asked my radiologist if this dose was "a lot." She responded like a true medical professional, "it's all relative" but 100 mCi is the standard amount for thyroid cancer patients. Compared to patients with hyperthyroidism, who receive 10 - 15 mCi, it's "a lot." Compared to patients undergoing radiation for other forms of cancer, it's "pennies."
She picked up the tongs and opened a jar while standing safely behind a shield. She brought a tiny bottle towards me and I offered my gloved hand. Out came a tiny white capsule. That's it? This is the pill? It looked like nothing. I looked up to find that the radiologist had now backed away from me at least 4 giant steps. She said from afar, just take the pill with the water on the counter and then you can leave.
I popped the little white capsule in my mouth and downed it with some water. I walked out of the room to find that all the technicians stepped back as I stepped forward. I felt like I had the plague or something. They smiled politely from 5 feet away and waved.
As I walked down the hallway, I was very aware of my personal space. I tried to stay on one side of the hall. After seeing a doctor and technicians back away from me, I began to sense the seriousness of this tiny pill.
I drove myself home wearing gloves and came into my apartment with just advise to not eat for 1 hour and drink plenty of water.
What I learned:
- most of the radioactive iodine (radioiodine) will be absorbed within 48 hours
- the unused iodine will get flushed out of the body through urine (hence all water drinking), a smaller portion through feces, sweat and saliva
- keeping good hygiene when using the restroom is imperative (this is true even when you're not receiving RAI therapy)
- at the end of treatment, no radioiodine will remain in the system
most importantly
- resume eating normally after 2-3 days after taking the pill...!!!!
NO MORE OF THIS CRAZY DIET~!!!!
Friday, July 9, 2010
No options...
I met with my ENT surgeon and he said my scar is healing nicely. He smiled at his work and asked me how I was doing. How am I doing? I'm tired, I'm depressed, I can't remember anything, I have poor blood circulation, I can't even eat anything I want. How would you be? He says all of this is happening due to my lack of thyroid hormone. It's been a month since my surgery so I've been deprived of this hormone for a while now.
My blood test reflects that my TSH (Thyroid-Stimulating Hormone)Level is high. How high? Normal range is from .40 to 4.50 mIU/L... my TSH level is 139.13! My body is screaming to my non-existent thyroid to make some damn hormones.
I can't take the hormones until I get my Radioactive Iodine therapy. I can't get therapy because I'm waiting for my insurance. I'm waiting for my insurance because my endocrinologist has been dragging his feet. And there is no excuse for my endocrinologist... other than incompetence.
But I finally got the ball rolling with making arrangements for my therapy. So much work to just get 1 pill.
Originally, I thought I would be admitted into the hospital and be in isolation for a couple of days before being released. Apparently, I have to be isolated for 1 week but not at the hospital. The Radioactive Iodine therapy is an outpatient procedure which means I have to go home and contaminate all my own stuff and clean it all later. I don't know why I have to pay the hospital when I'm doing all the work. I take the pill, I go home and take care of myself, then I have to clean everything and live in my apartment which is now contaminated with radiation. What exactly am I paying them for?
I asked them what my other options were if I don't get admitted but I can't be in my own apartment. Their response: go to a hotel. Go to a hotel??? You said stay away from people for a week. Now you want me to go to a hotel and contaminate their facilities while paying them per night out of my own pocket to stay there? How is this responsible?
There has to be a better way... but for the time being, I have no other options.
My blood test reflects that my TSH (Thyroid-Stimulating Hormone)Level is high. How high? Normal range is from .40 to 4.50 mIU/L... my TSH level is 139.13! My body is screaming to my non-existent thyroid to make some damn hormones.
I can't take the hormones until I get my Radioactive Iodine therapy. I can't get therapy because I'm waiting for my insurance. I'm waiting for my insurance because my endocrinologist has been dragging his feet. And there is no excuse for my endocrinologist... other than incompetence.
But I finally got the ball rolling with making arrangements for my therapy. So much work to just get 1 pill.
Originally, I thought I would be admitted into the hospital and be in isolation for a couple of days before being released. Apparently, I have to be isolated for 1 week but not at the hospital. The Radioactive Iodine therapy is an outpatient procedure which means I have to go home and contaminate all my own stuff and clean it all later. I don't know why I have to pay the hospital when I'm doing all the work. I take the pill, I go home and take care of myself, then I have to clean everything and live in my apartment which is now contaminated with radiation. What exactly am I paying them for?
I asked them what my other options were if I don't get admitted but I can't be in my own apartment. Their response: go to a hotel. Go to a hotel??? You said stay away from people for a week. Now you want me to go to a hotel and contaminate their facilities while paying them per night out of my own pocket to stay there? How is this responsible?
There has to be a better way... but for the time being, I have no other options.
Thursday, July 1, 2010
Why So Serious...
My posts have been filled with negativity... bad diets, waiting around, aimlessness.
It doesn't have to be this way.
I found these online... I WANT these tee shirts!
Hope they give you a chuckle. :)
It doesn't have to be this way.
I found these online... I WANT these tee shirts!
Hope they give you a chuckle. :)
$26.99 @ www.funnycancershirts.com
$22.00 @ http://www.cafepress.com/
$22.00 @ http://www.cafepress.com Anybody reading this post... get me one of these tee shirts. I had cancer.
That's right. I used the Cancer card! Just kidding... :D
Wednesday, June 30, 2010
Am I Ready Yet?
The time between pre-op and surgery seemed to FLY by... but the time between post-op and therapy seems to be dragging on. I'm not saying that I don't enjoy missing work and sitting around doing nothing but after the first week or so, it gets a little boring. (I know when I get back to work, I'll kick myself for uttering such nonsense.)
I went back up to NJ earlier this week to get my blood test done. Five very large vials later, I went home and loaded up on sugar. (Meringue cookies are awesome! They give you the crunch like you're eating a real cookie but since it's just sugar and egg whites, it's on the approved list!) Pending the results of my blood test, I'll be interviewed for radioactive iodine therapy.
I hope to be radioactive by next week if things go well. The sooner the better. Let's get me off this low iodine, crazy diet ASAP!
I went back up to NJ earlier this week to get my blood test done. Five very large vials later, I went home and loaded up on sugar. (Meringue cookies are awesome! They give you the crunch like you're eating a real cookie but since it's just sugar and egg whites, it's on the approved list!) Pending the results of my blood test, I'll be interviewed for radioactive iodine therapy.
I hope to be radioactive by next week if things go well. The sooner the better. Let's get me off this low iodine, crazy diet ASAP!
Friday, June 18, 2010
Iodine is delicious
In preparation for the radioactive iodine therapy, I've been instructed to follow a low-iodine diet.
It may be the most frustrating, unappetizing, depressing diet ever.
First of all, the information given to me by doctors is very vague. I don't know what I can and cannot eat. When I turn to the Internet for more clarification, there are enough discrepancies to drive a person mad. No eggs at all, egg whites are okay. All fruits and vegetables are fine, don't eat soybeans, broccoli and spinach. Absolutely no seafood, fresh fish allowed. No dairy, 1/2 cup of dairy okay. What am I supposed to believe? I might as well just not eat anything at all.
Secondly, I used to enjoy food shopping and eating. Now, my life consists of label reading, throwing up my hands and putting the box back. Try food shopping for anything that doesn't have salt, eggs, soy or dairy products. Just try it... It's infuriating. I look at food and immediately think, no I can't eat that. It has salt in it. No. Eggs. No. Milk. Just the sight of food and I lose my appetite.
I've been eating a steady diet of bell peppers, pumpkin, watermelon, apples, asparagus, raw unsalted almonds, mushrooms... seeing a pattern? On the plus side, I get to have marshmallows!
For other people going through this, I've complied a list. It's not an official list and I'm not by any means an expert. But it's what I've been following...
Low-Iodine Diet
AVOID:
It may be the most frustrating, unappetizing, depressing diet ever.
First of all, the information given to me by doctors is very vague. I don't know what I can and cannot eat. When I turn to the Internet for more clarification, there are enough discrepancies to drive a person mad. No eggs at all, egg whites are okay. All fruits and vegetables are fine, don't eat soybeans, broccoli and spinach. Absolutely no seafood, fresh fish allowed. No dairy, 1/2 cup of dairy okay. What am I supposed to believe? I might as well just not eat anything at all.
Secondly, I used to enjoy food shopping and eating. Now, my life consists of label reading, throwing up my hands and putting the box back. Try food shopping for anything that doesn't have salt, eggs, soy or dairy products. Just try it... It's infuriating. I look at food and immediately think, no I can't eat that. It has salt in it. No. Eggs. No. Milk. Just the sight of food and I lose my appetite.
I've been eating a steady diet of bell peppers, pumpkin, watermelon, apples, asparagus, raw unsalted almonds, mushrooms... seeing a pattern? On the plus side, I get to have marshmallows!
For other people going through this, I've complied a list. It's not an official list and I'm not by any means an expert. But it's what I've been following...
Low-Iodine Diet
AVOID:
- Iodized salt, sea salt, all foods that have iodized salt and sea salt (this includes kimchee)
- Seafood including kelp, seaweed
- Egg yolks, all foods including egg yolks
- Dairy products (milk, cheese, yogurt, butter, ice cream, chocolate)
- Soybeans and other beans (kidney beans, lima beans, pinto beans)
- Soy products (soy sauce, soy milk, tofu)
- Any commerical baked goods (breads, cakes, muffins, doughnuts)
I'll keep updating...
Friday, June 11, 2010
"The Best Cancer"
Apparently, if you're gonna have cancer, this is the best one to have. Nothing but the best for me!
I was diagnosed with Papillary Thyroid Carcinoma which is just a fancy way of saying thyroid cancer.
It's funny all the advanced terminology doctors have to use... It started as just a "lump" then was referred to as a "nodule" then became a "tumor" then was found to be "malignant" before I knew it, my doctor was telling me I had "cancer." My little "lump" was having a full on identity crisis.
I didn't know what to think. People hear cancer and think they're going to die. I didn't think that. Or at least not until my doctor said to me, "it's not like you're going to DIE. People don't DIE from thyroid cancer." Well, that's comforting.
My doctor explained that thyroid cancer is not like most cancers and is the most curable. "If you're going to have cancer, this is the one to get." Thanks, but I'd rather not have it at all, if that's okay with you. But he did his best to make it seem like no big deal. And I believed him. I figured it was just going to be one operation to take the stupid stinker out and that'll be all. Go back to work in a couple days, have a small scar, no biggie. I didn't even refer to it as cancer. Just this "thing" that needed to come out.
But he suggested I bring in the family to discuss matters further. I had told my family in the same manner that he told me. Light and breezy, nothing too serious. To my surprise, with my family crammed into a small examination room waiting on pins and needles, he had a completely different tone. Serious, calcuating, cautious... where was light and breezy? He recited statistics and percentages, measurements and ratios, risks and precautions. My family and I walked out of the room slightly less confident than when we walked in.
The no biggie scenario turned into at least 3-4 weeks out of work, potentially losing my voice, radioactive iodine therapy, isolation for at least a couple days during therapy, 5 years of constant check ups and blood tests, and hormone pill to be taken every day for the rest of my life.
Crazy how things can turn on a dime. But it is what it is and before I knew it, it was surgery day. Anxiously, I packed an overnight bag for the hospital. My family was eagerly trying to help me with anything and everything. I could feel the sense of helplessness from my father. He didn't know what to do so he "helped" by demanding everyone eat something. In true Korean family fashion, force feed to show you care.
Once at the hospital, I changed into my very stylish hospital gown and waited for my turn to be wheeled away into surgery. Finally, my time came... They brought me into the OR. It was very different than what I saw on TV. The last thing I remember was a mask coming towards my face. I woke up to my family around me. It's all hazy now but I remember faces, flowers, commotion. I tried to speak and sound came out! I no longer had a thyroid but I still had my voice!
So now I sit here, thyroid-less but also cancer-less.... truly the best cancer.
I was diagnosed with Papillary Thyroid Carcinoma which is just a fancy way of saying thyroid cancer.
It's funny all the advanced terminology doctors have to use... It started as just a "lump" then was referred to as a "nodule" then became a "tumor" then was found to be "malignant" before I knew it, my doctor was telling me I had "cancer." My little "lump" was having a full on identity crisis.
I didn't know what to think. People hear cancer and think they're going to die. I didn't think that. Or at least not until my doctor said to me, "it's not like you're going to DIE. People don't DIE from thyroid cancer." Well, that's comforting.
My doctor explained that thyroid cancer is not like most cancers and is the most curable. "If you're going to have cancer, this is the one to get." Thanks, but I'd rather not have it at all, if that's okay with you. But he did his best to make it seem like no big deal. And I believed him. I figured it was just going to be one operation to take the stupid stinker out and that'll be all. Go back to work in a couple days, have a small scar, no biggie. I didn't even refer to it as cancer. Just this "thing" that needed to come out.
But he suggested I bring in the family to discuss matters further. I had told my family in the same manner that he told me. Light and breezy, nothing too serious. To my surprise, with my family crammed into a small examination room waiting on pins and needles, he had a completely different tone. Serious, calcuating, cautious... where was light and breezy? He recited statistics and percentages, measurements and ratios, risks and precautions. My family and I walked out of the room slightly less confident than when we walked in.
The no biggie scenario turned into at least 3-4 weeks out of work, potentially losing my voice, radioactive iodine therapy, isolation for at least a couple days during therapy, 5 years of constant check ups and blood tests, and hormone pill to be taken every day for the rest of my life.
Crazy how things can turn on a dime. But it is what it is and before I knew it, it was surgery day. Anxiously, I packed an overnight bag for the hospital. My family was eagerly trying to help me with anything and everything. I could feel the sense of helplessness from my father. He didn't know what to do so he "helped" by demanding everyone eat something. In true Korean family fashion, force feed to show you care.
Once at the hospital, I changed into my very stylish hospital gown and waited for my turn to be wheeled away into surgery. Finally, my time came... They brought me into the OR. It was very different than what I saw on TV. The last thing I remember was a mask coming towards my face. I woke up to my family around me. It's all hazy now but I remember faces, flowers, commotion. I tried to speak and sound came out! I no longer had a thyroid but I still had my voice!
So now I sit here, thyroid-less but also cancer-less.... truly the best cancer.
Intro...
A friend told me that it might be helpful to keep a journal of everything that's happening. That it'll help me sort out my thoughts and feelings and might even be therapeutic for me.
Maybe.... let's give it a shot.
I have cancer.
Corrrection: I HAD cancer.... i hope.
Maybe.... let's give it a shot.
I have cancer.
Corrrection: I HAD cancer.... i hope.
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