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Would you expect anything less than confusing for me?
I waited and waited for the doctor's call. It never came. Suddenly it occurred to me that maybe they called my home phone! So I called home and played back all the messages, unfortunately there were two weeks of phone messages which had not been deleted so I had to listen to all of them FIRST... it took 12 minutes.
Last call was from the doctor who is filling in for my Radiation Oncologist this week. He indicated that my "case is not as straight-forward" as most... The radiologist that read the pictures indicated that there was some uptake in the thyroid bed which was to be expected. Also there was some uptake in the nose(?) but he may have said nodes (it is hard to understand when listening to the messages via my cellphone) - he said that radiologist was not sure whether or not this was 'significant'. He said "things look about as well as can be expected" (what the heck does that mean?)
He didn't mention any other areas of involvement and said "all and all things look great."
He said I can call the office tomorrow, he won't be in but I can talk to one of the other doctors. Basically that means that I can call back, leave a message and wait all day for someone to call me again.
I almost wish I hadn't heard the phone message. All it has done was given me more questions.
At least he didn't say that they want me to come in to discuss it - that would have meant bad news (in my opinion)
Tuesday, November 30, 2004
Waiting for Scan Results
I called the Nuclear Medicine Department at Hoag Hospital this morning to inquire about the results from my scan. The report is "in"... but it is being mailed to my doctor in Chico! UGH!! So I asked them to please fax a copy right away (this morning) and that is now being done. Then I called my doc's office in Chico and naturally, he is not there this week. hahahahaha! So I asked that whomever is seeing his patients would please call me as soon as they receive the fax and read the report. I explained that I am on pins and needles here and want to know the results as soon as possible since it's been such a long drawn-out journey to even get to this point.
Will post results as soon as I know.
Will post results as soon as I know.
Whole Body Scan (a.k.a. WBS)
Well, I made it through the whole body scan (MRI), it was easy except that they tell you, "Okay now this object is going to be right above your face for about 10 minutes and you have to hold COMPLETELY STILL..." which is when my pinky toe starts to twitch or itch or my neck is cramped from holding in place so long for the first half of the scan. hahahah!! But I was a good girl. I didn't move and they didn't have to re-do any pictures.
Now I get to wait two days and make phone calls to find out which doctor I talk to so I can get some answers.
Now I get to wait two days and make phone calls to find out which doctor I talk to so I can get some answers.
Sunday, November 28, 2004
"Who You Are" by Lanette Fernandez
This one came in my daily inspirational email from MountainWings.com
"Who You Are"
============
I find myself on the downhill slide of yet another trial in my life where confusion seemed to be the only thing I was sure of.
Who, what, why, when, how, and how long were the questions I didn't have answers for. Last night, I sat quietly and instead of asking, I just listened. God whispered to me.
Who I am is a child of His. What I am is a wife and mother. Why is something we can only figure out as we go along.When is always and can never be more than right here and right now (live for today). How is only with His help, and how long depends mostly on us. He explained to me that I am who and what I am (don't try to be any more or any less) therefore I need to do and be the best that I can at all times.
I get discouraged, but I also have the ability to inspire and be inspired. I become sad sometimes, but I can also experience joy. I can become angry, but I have the heart to console. I need to be forgiven sometimes (a lot) but I can also forgive. I feel helpless at times, but can still lend a hand or ear to help others. I am a teacher, but I still have much to learn. I get confused, but deep down I know the answers are within my grasp. It is the same grasp that boldly lifts my hands to Heaven, and gently brings me to my knees. Sometimes I feel lost, but that is merely an illusion because it is not only enough for my Father to know where I am and exactly what I am going through, He has every hair on my head numbered.
Life is a series of lessons to be learned. That is the only way we can grow. I wish I had all the answers, but sometimes I think (I know) the only way for us to become stronger and grow into what He wants us to be, is to walk through the fire. So, whatever you're going through, hold your head up, guard your heart, and put all your faith and trust in the only ONE who will never fail you....... JESUS.......
Remember all the things you can be even when you are sometimes those things you wish you weren't.
~ Lanette Fernandez, Wyoming
"Who You Are"
============
I find myself on the downhill slide of yet another trial in my life where confusion seemed to be the only thing I was sure of.
Who, what, why, when, how, and how long were the questions I didn't have answers for. Last night, I sat quietly and instead of asking, I just listened. God whispered to me.
Who I am is a child of His. What I am is a wife and mother. Why is something we can only figure out as we go along.When is always and can never be more than right here and right now (live for today). How is only with His help, and how long depends mostly on us. He explained to me that I am who and what I am (don't try to be any more or any less) therefore I need to do and be the best that I can at all times.
I get discouraged, but I also have the ability to inspire and be inspired. I become sad sometimes, but I can also experience joy. I can become angry, but I have the heart to console. I need to be forgiven sometimes (a lot) but I can also forgive. I feel helpless at times, but can still lend a hand or ear to help others. I am a teacher, but I still have much to learn. I get confused, but deep down I know the answers are within my grasp. It is the same grasp that boldly lifts my hands to Heaven, and gently brings me to my knees. Sometimes I feel lost, but that is merely an illusion because it is not only enough for my Father to know where I am and exactly what I am going through, He has every hair on my head numbered.
Life is a series of lessons to be learned. That is the only way we can grow. I wish I had all the answers, but sometimes I think (I know) the only way for us to become stronger and grow into what He wants us to be, is to walk through the fire. So, whatever you're going through, hold your head up, guard your heart, and put all your faith and trust in the only ONE who will never fail you....... JESUS.......
Remember all the things you can be even when you are sometimes those things you wish you weren't.
~ Lanette Fernandez, Wyoming
Saturday, November 27, 2004
I Refuse to Stay Sick
I am already starting to feel better! That tonic stuff tastes horrible but it sure works if you take a lot of it in the first 24 hours. Most of the bronchitis symptoms are gone.
My adventure in thyroid withdrawal and RAI treatment.. the short story
(this entry was actually an email reply to someone I had forgotten to 'update' on the latest with me, but am including it here as it might fill in the blanks for some of you as well)
Oh I am doing okay so far. As ever, there was still a lot of confusion or should I say a lack of agreement as far as how long I should stay away from Leila. My doc in Chico (where I live) said basically to stay away from her for 7-11 days totally and then to spend time with her during the day afterwards at varying degrees of proximity. The doctors here in southern California where I was treated with the RAI had the usual cavalier attitude.... just stay away from babies and pregnant women for 7 days. flush 3 times and launder seperately for the first 4 days.
They gave me 98.4 millicuries which I asked why it wasn't 100 mci? They said that as long as it is within 10% of the "dose" it still counts as the full dose.....I said "okay... that is weird", but what the hell do I know about radioactive iodine.
I didn't get a whole body scan (WBS) before treatment. they said they don't do that here as a rule... that they were giving me the dose or RAI no matter what an WBS would show. so much for hoping for that miracle from God saying I wouldn't need the RAI after all. hahahah pardon my sarcasm, it is keeping me relatively sane. I will get my WBS Mon Nov 29th. I have no idea what it entails, how long it takes, if it is an MRI etc... as usual they are keeping me in the dark until the day of the procedure. I have long since given up the idea of control in my life otherwise I would be looking for someone's butt to chew.
the whole hypothyroid roller coast was HELL...!! it was everything I had read about online from all the other people who had been through it - about the neurotic feelings, dropping things, standing in front of the refrigerator for 10 minutes looking for the hairbrush, losing the train of thought in the middle of a conversation. I said my brain became like an etch-a-sketch - all nice and pretty one minute and a blank screen the next. Interestingly enough the tendonitis in my thumbs which was very painful went away when I was on NO Levoxyl. So it confirms what I thought which that either I can't tolerate high doses of levoxyl or that just having high doses of synthetic thyroid in my system does not agree with my joints and tendons since I end up in chronic achy feelings in all kinds of places.
Then there is the low-iodine diet a.k.a welcome to the "land of bland". My doc at home was sort of ... well, he didn't seem to think it mattered whether or not I did the low iodine diet before treatment!! I didn't believe that. I chatted with too many other thyca patients on yahoo groups to know that it IS important to help assure a better treatment, especially the first time. I like my doctor and all, but he also didn't take me off of the thyroid meds early enough. So when I got here they tested my TSH and it was only 1.8. Not high enough to give me the RAI. I had to WAIT ANOTHER WEEK!! Another week on that diet too. I was ready to go ballistic on someone, I tell ya. I exercised a lot of self control and did alot of praying for strength and acceptance. Unfortunately I live in a small community and my alternatives for treatments and doctors are very limited unless I travel 3 hours to San Francisco every time.
The doc here that gave me the RAI told me I could start taking the Levoxyl the morning following treatment and I sure did. 175mcg Levoxyl which made me extremely dizzy and achy for the first 4 days after I started taking it. I guess it was a shock to my system. Howoever it has been 10 days on it and I already feel better, not as heady and weird, not as forgetful and certainly NOT AS TIRED! hallelujah. When I get home I will consult with the internist, not the radiation oncologist, about my correct dosage because I don't think I should be on such a high dose for a long period of time or it could bring on heart problems and osteoporosis. Just what I don't need.
Oh I am doing okay so far. As ever, there was still a lot of confusion or should I say a lack of agreement as far as how long I should stay away from Leila. My doc in Chico (where I live) said basically to stay away from her for 7-11 days totally and then to spend time with her during the day afterwards at varying degrees of proximity. The doctors here in southern California where I was treated with the RAI had the usual cavalier attitude.... just stay away from babies and pregnant women for 7 days. flush 3 times and launder seperately for the first 4 days.
They gave me 98.4 millicuries which I asked why it wasn't 100 mci? They said that as long as it is within 10% of the "dose" it still counts as the full dose.....I said "okay... that is weird", but what the hell do I know about radioactive iodine.
I didn't get a whole body scan (WBS) before treatment. they said they don't do that here as a rule... that they were giving me the dose or RAI no matter what an WBS would show. so much for hoping for that miracle from God saying I wouldn't need the RAI after all. hahahah pardon my sarcasm, it is keeping me relatively sane. I will get my WBS Mon Nov 29th. I have no idea what it entails, how long it takes, if it is an MRI etc... as usual they are keeping me in the dark until the day of the procedure. I have long since given up the idea of control in my life otherwise I would be looking for someone's butt to chew.
the whole hypothyroid roller coast was HELL...!! it was everything I had read about online from all the other people who had been through it - about the neurotic feelings, dropping things, standing in front of the refrigerator for 10 minutes looking for the hairbrush, losing the train of thought in the middle of a conversation. I said my brain became like an etch-a-sketch - all nice and pretty one minute and a blank screen the next. Interestingly enough the tendonitis in my thumbs which was very painful went away when I was on NO Levoxyl. So it confirms what I thought which that either I can't tolerate high doses of levoxyl or that just having high doses of synthetic thyroid in my system does not agree with my joints and tendons since I end up in chronic achy feelings in all kinds of places.
Then there is the low-iodine diet a.k.a welcome to the "land of bland". My doc at home was sort of ... well, he didn't seem to think it mattered whether or not I did the low iodine diet before treatment!! I didn't believe that. I chatted with too many other thyca patients on yahoo groups to know that it IS important to help assure a better treatment, especially the first time. I like my doctor and all, but he also didn't take me off of the thyroid meds early enough. So when I got here they tested my TSH and it was only 1.8. Not high enough to give me the RAI. I had to WAIT ANOTHER WEEK!! Another week on that diet too. I was ready to go ballistic on someone, I tell ya. I exercised a lot of self control and did alot of praying for strength and acceptance. Unfortunately I live in a small community and my alternatives for treatments and doctors are very limited unless I travel 3 hours to San Francisco every time.
The doc here that gave me the RAI told me I could start taking the Levoxyl the morning following treatment and I sure did. 175mcg Levoxyl which made me extremely dizzy and achy for the first 4 days after I started taking it. I guess it was a shock to my system. Howoever it has been 10 days on it and I already feel better, not as heady and weird, not as forgetful and certainly NOT AS TIRED! hallelujah. When I get home I will consult with the internist, not the radiation oncologist, about my correct dosage because I don't think I should be on such a high dose for a long period of time or it could bring on heart problems and osteoporosis. Just what I don't need.
Thursday, November 25, 2004
HAPPY THANKSGIVING EVERYONE!
This year I am happy to be alive. I am also happy I will see my Leila today. She is going to get a chance to meet many relatives who have only seen her in pictures so far, it’ll be nice.
I have two Thanksgiving events to go to, which will mean too much eating followed by a much-needed turkey induced NAP.
Well I do believe I have bronchitis since I now have the congestion I was wondering about yesterday. No problem since I started taking Echinacea and Goldenseal at the onset of symptoms and then started drinking Echinacea Ginger Tonic today (which tastes horrible, yuck).
I have two Thanksgiving events to go to, which will mean too much eating followed by a much-needed turkey induced NAP.
Well I do believe I have bronchitis since I now have the congestion I was wondering about yesterday. No problem since I started taking Echinacea and Goldenseal at the onset of symptoms and then started drinking Echinacea Ginger Tonic today (which tastes horrible, yuck).
Tuesday, November 23, 2004
New Symptoms
Now a new symptom/side effect I am wondering about. I have had - for the last two days - what feels like throat congestion. I keep dry-coughing as though I could rid myself of phlegm but, alas, nothing comes up or out! I definitely feel a tightness in my throat when I inhale through my mouth. I am definitely hoarse sounding. Exhaling does not produce the tight feeling. There does not appear to be anything in my lungs as far as congestion goes (I can't feel it, let me put it that way). Anyhow I posted this inquiry to the Yahoo Group for Thyroid Cancer survivors... It would help me to know if I need to find a quick care place to go to or if I should just hang in there and let it pass normally. I am thinking it might be swollen glands in my throat or neck, is that a possibility?
I am 500 miles from home for treatment for thyroid cancer, and sort of hanging by a thread. My doc at home defers to the doc here who defers back to my doc at home so I don't get any real answers or help. It is an endless maddening cycle for me, in this time when I really need some stability. I don't have an endo, there are none in my area who will take my insurance so I am being treated by a radiation oncologist. So far I have managed to get the RAI and am supposed to have a WBS on Nov 29th. In the meantime I am trying diligently to take care of myself and not freak out over every little detail since no one in the medical profession wants to answer my questions!
I am 500 miles from home for treatment for thyroid cancer, and sort of hanging by a thread. My doc at home defers to the doc here who defers back to my doc at home so I don't get any real answers or help. It is an endless maddening cycle for me, in this time when I really need some stability. I don't have an endo, there are none in my area who will take my insurance so I am being treated by a radiation oncologist. So far I have managed to get the RAI and am supposed to have a WBS on Nov 29th. In the meantime I am trying diligently to take care of myself and not freak out over every little detail since no one in the medical profession wants to answer my questions!
Monday, November 22, 2004
Baby Girl
Good-day,
I have been able to see my little precious baby twice, but have stayed a cautious six feet away. That's hard to do when she is laying there trying to talk, making all those cute little baby sounds. The last two days she was really "going to town" almost like she is excited to hear her own voice and she erupts into a smile so easily when anyone tells her she is a "pretty girl". Just warms the heart.
My next big event is Thanksgiving with the family! I have two events to go to, I will probably be worn out after the first one. I have noticed that after a few hours of functioning that I become very lethargic.
I try not to push it too much, just take my time and relax with a book or a magazine if I am unable to sleep (which is often).
The side effects of the treatment are weird. there were those immediate effects which came along in the first hours and then over the next few days. Now I am a week past treatment and new stuff is coming along!
I have been able to see my little precious baby twice, but have stayed a cautious six feet away. That's hard to do when she is laying there trying to talk, making all those cute little baby sounds. The last two days she was really "going to town" almost like she is excited to hear her own voice and she erupts into a smile so easily when anyone tells her she is a "pretty girl". Just warms the heart.
My next big event is Thanksgiving with the family! I have two events to go to, I will probably be worn out after the first one. I have noticed that after a few hours of functioning that I become very lethargic.
I try not to push it too much, just take my time and relax with a book or a magazine if I am unable to sleep (which is often).
The side effects of the treatment are weird. there were those immediate effects which came along in the first hours and then over the next few days. Now I am a week past treatment and new stuff is coming along!
Friday, November 19, 2004
The Feeling of Disappointment
Several people made promises to come see me and keep me company but everyone has come up with excuses why they can’t, so I am sitting here feeling very disappointed in them. I am tired of always being available for my friends who somehow come up with excuses of why they can’t be there for me when I need them (which is RARELY).
At least I have my family. They have not let me down!
This being secluded from the rest of the world is horrible. How can people stand this for long periods of time? Even if I don’t feel like talking to people, I can usually go sit in a coffee shop or a movie theater alone – but not right now. UGH!
At least I have my family. They have not let me down!
This being secluded from the rest of the world is horrible. How can people stand this for long periods of time? Even if I don’t feel like talking to people, I can usually go sit in a coffee shop or a movie theater alone – but not right now. UGH!
Wednesday, November 17, 2004
ANSWERS TO YOUR QUESTIONS
I have received several phone calls and email inquiries from my friends and family asking about how everything works and how many chemo treatments I am getting, etc. I am not getting radiation or chemotherapy! This is a one-treatment deal. Thyroid cancer is rare, only about 20,000 people a year are diagnosed (representing about 1 percent of all cancers), which means the treatment is different from conventional cancer treatments like chemo and radiation.
The I-131 (radioactive iodine) is what was found in nuclear fallout from the above-ground testing in Nevada also at places like Hiroshima and Chernobyl. It destroys thyroid cells and can cause cancer (including Leukemia and Lymphoma). For those people whose thyroid gland has been removed, a high dose is used to kill thyroid cancer cells remaining anywhere in the body. This high dose given to me can only be given once every six months, but if it works the first time I may not have to repeat unless the cancer comes back years down the road. It is very toxic which is why it's not given in several doses for weeks at a time( like chemo or radiation) and why I have to remain a safe distance from people for the first week following treatment.
Basically I took this pill which was delivered to me in a lead container, you know, with all the "RADIOACTIVE - CAUTION" stickers everywhere. Talk about a controlled substance! Then they made me stand at the door, held a yardstick to me and measured with a Geiger counter to measure the amount of radiation emanating from my body. I was then sent home to where I am staying with explicit instructions about exposing others. I am kind of like the boy in a bubble right now... in two weeks I go back to the hospital for a whole body scan (probably MRI) to see what happened with the treatment, to see if there are any hot spots or cancer showing up anywhere. I am praying for a clean scan.
Leila is with my mom. I cannot see her at all for one whole week, afterwards I can spend time with her during the day but not get real close or hold her for a few weeks. After three weeks I am basically considered ok to hold my baby near me again.
At this time I wear rubber gloves while typing on the computer so that I don't leave radioactive waste on it. I have to use plastic utensils and plates for the first week and wash my laundry separately. 24hrs after treatment I was able to resume my regular eating habits, what a tremendous relief!
Tuesday, November 16, 2004
The Day After Treatment
I felt kind of sick most of today. Nauseated and really exhausted. Definitely worse than yesterday but I was expecting that to be the case! The order of the day is read, sleep, read some more, check email and sleep!
I'm feeling a little better tonight, I am ready to tackle a big fat burrito with hot sauce ....ahhhhh... three weeks on a special plain diet was hell, I'll tell ya.
I'm feeling a little better tonight, I am ready to tackle a big fat burrito with hot sauce ....ahhhhh... three weeks on a special plain diet was hell, I'll tell ya.
Monday, November 15, 2004
Treatment Day! YEAH!
Helllloooooo from sunny southern California!
Okay I survived the wait of the extra week until I could get my thyroid cancer treatment. I'll tell you, that really was the WORST of it so far. Going in - heart and mind set to get it done and move on, only to be told "no, your body is not ready yet ... come back next week and we will try again." Aaaaaaaaaaaaaack! I do believe my theme song for this period was "Anticipation"
For lunch today I swallowed two blue pills containing a total of 100 millicuries of radioactive iodine. They were brought to me in a lead container with radioactive-warning labels on it, inside were plastic vials containing the radioactive iodine pills. The pills were metallic blue and sort of heavy feeling. YUM!! Actually I was so happy they even allowed me to do it today that I almost jumped out of the chair to hug the doctor and physicist. Of course then they would have sent me to the psych ward via those nice young men in their clean white coats. hahahahah. They didn't make me stay in the hospital - it was all done outpatient style. Just like a drive thru, if you think about it. "Welcome to Nuclear Medicine, may I take your order? Just swallow these two pills and think nice thoughts about your cancer cells dying the miserable death they deserve… Thank you, have a nice day!"
When I came home I felt fine. After about an hour I began to feel extremely tired and cold, so I took a nap for a few hours. Now I just feel the need to let everyone know that I am okay and going through the radioactive adventure. Basically I just wait for the stuff to get through my system and do its job. It will ablate or kill any remaining thyroid cancer cells and eventually dissipate from my body. For the first week I will have to remain a safe distance from people and stay away from children, including my own (sadly). Also cannot eat out at restaurants or go to the movies, for the safety of others and to make sure I get nice and bored. I have the laptop with me and am so far successfully typing this with latex gloves on so I don't leave any radioactive residue that might come out of my pores on the keyboard.
I will be able to chat on yahoo messenger, if you have it. Look for me to be online. I appreciate email, you will probably get an auto reply at first but I will do my best to keep up with all of you.
Okay I survived the wait of the extra week until I could get my thyroid cancer treatment. I'll tell you, that really was the WORST of it so far. Going in - heart and mind set to get it done and move on, only to be told "no, your body is not ready yet ... come back next week and we will try again." Aaaaaaaaaaaaaack! I do believe my theme song for this period was "Anticipation"
For lunch today I swallowed two blue pills containing a total of 100 millicuries of radioactive iodine. They were brought to me in a lead container with radioactive-warning labels on it, inside were plastic vials containing the radioactive iodine pills. The pills were metallic blue and sort of heavy feeling. YUM!! Actually I was so happy they even allowed me to do it today that I almost jumped out of the chair to hug the doctor and physicist. Of course then they would have sent me to the psych ward via those nice young men in their clean white coats. hahahahah. They didn't make me stay in the hospital - it was all done outpatient style. Just like a drive thru, if you think about it. "Welcome to Nuclear Medicine, may I take your order? Just swallow these two pills and think nice thoughts about your cancer cells dying the miserable death they deserve… Thank you, have a nice day!"
When I came home I felt fine. After about an hour I began to feel extremely tired and cold, so I took a nap for a few hours. Now I just feel the need to let everyone know that I am okay and going through the radioactive adventure. Basically I just wait for the stuff to get through my system and do its job. It will ablate or kill any remaining thyroid cancer cells and eventually dissipate from my body. For the first week I will have to remain a safe distance from people and stay away from children, including my own (sadly). Also cannot eat out at restaurants or go to the movies, for the safety of others and to make sure I get nice and bored. I have the laptop with me and am so far successfully typing this with latex gloves on so I don't leave any radioactive residue that might come out of my pores on the keyboard.
I will be able to chat on yahoo messenger, if you have it. Look for me to be online. I appreciate email, you will probably get an auto reply at first but I will do my best to keep up with all of you.
Words of Encouragement
I am grateful for the reminder in these words of wisdom that my sister Sarah emailed to me this morning...
"I've learned that no matter what happens, or how bad it seems today, life does go on, and it will be better tomorrow. I've learned that you can tell a lot about a person by the way he/she handles these three things: a rainy day, lost luggage, and tangled Christmas tree lights. I've learned that regardless of your relationship with your parents, you'll miss them when they're gone from your life. I've learned that making a "living" is not the same thing as making a "life." I've learned that life sometimes gives you a second chance. I've learned that you shouldn't go through life with a catcher's mitt on both hands; you need to be able to throw something back. I've learned that whenever I decide something with an open heart, I usually make the right decision. I've learned that even when I have pains, I don't have to be one. I've learned that every day you should reach out and touch someone. People love a warm hug, or just a friendly pat on the back. I've learned that I still have a lot to learn. I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel."
-- Maya Angelou
"I've learned that no matter what happens, or how bad it seems today, life does go on, and it will be better tomorrow. I've learned that you can tell a lot about a person by the way he/she handles these three things: a rainy day, lost luggage, and tangled Christmas tree lights. I've learned that regardless of your relationship with your parents, you'll miss them when they're gone from your life. I've learned that making a "living" is not the same thing as making a "life." I've learned that life sometimes gives you a second chance. I've learned that you shouldn't go through life with a catcher's mitt on both hands; you need to be able to throw something back. I've learned that whenever I decide something with an open heart, I usually make the right decision. I've learned that even when I have pains, I don't have to be one. I've learned that every day you should reach out and touch someone. People love a warm hug, or just a friendly pat on the back. I've learned that I still have a lot to learn. I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel."
-- Maya Angelou
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