Friday, July 30, 2010
Don't go there
I'm usually pretty good at following my "don't go there" mantra, yes, the one I've been living for 40 years now. Party full of people I don't know - don't go there (not unless I'm with KT); mortal enemy frequents my destination (Starbucks, gym, bus stop, restaurant, church, etc.) - don't go there; gut feeling that I may get mugged if I walk down that dark alley by myself - don't go there. So why was it today that I decided to go somewhere, against my better judgment that was screaming "DON'T GO THERE!"? I went there, and perhaps now all the flood gates of everything 'don't go there' that I have been avoiding for the past six years will now come back to haunt me. Why on earth did I go there?!? It was painful. I should have walked away when I had the chance. Or I could have pretended I was deaf, or wasn't who they thought I was. With any luck my sunglasses did not hide the fact that my eyes were shooting daggers at his throat with every word that came out of his mouth. Was my horoscope off a couple of days because I could have sworn the challenging day that would require me to act gracefully was supposed to be two or three days ago, not today.
Thursday, July 29, 2010
How does my neck look? 7/29/10
I have been wondering about the 'additional testing' that I will be discussing with my ENDO in two weeks. I know that I have to do blood work to make sure my TSH is at the correct level (should be below .5, but the range thereof, I believe, depends on the doctor), and my Tg (Thyroglobulin level) and TgAb (Thyroglobulin antibody levels, if I have any) should be taken at the same time. My Levoxyl dosage may be increased or decreased depending on what my TSH is. I believe I'd have to do the blood work every 6 weeks until my TSH is at the correct level. If I have TgAb, then my Tg level cannot be used as a tumor marker. Not sure where things will fall for me on this one since they found evidence suggesting Hashimoto's in my right thyroid lobe, which I believe creates TgAb. Also, before RAI, the Radiologist told me that sometimes HCC doesn't create Tg. Hopefully I have measurable Tg and no TgAb.
I also know that depending on what the results of my WBS were, if they found evidence that the thyroid cancer cells were in another part of my body, then I'd have to do go through RAI again at either 6 months or 12 months. A PET scan would only be necessary if the HCC spread somewhere else in my body. What other tests could there be?!?
As for my scar, I decided to not put any sunblock or moisturizer, etc. on it for the past couple of days. The sporadic tingling along my scar has not been as noticeable, so I think I'll only put the sunblock on for those days when I know I will be out in the sun.
So tell me, how does my neck look?
Tuesday, July 27, 2010
WBS results...
It has been two weeks since my second WBS (July 12), and I had not heard anything from my ENDO, so I decided to email him to see if I had anything to worry about. His response:
Well, that reply seems to be worse than not finding out anything until my appt 2 weeks from now! It could still go either way, but the part about more tests is what worries me. And what's with the no major findings? Does that mean nothing showed up at all? Ugh! Then again, I guess it wouldn't be good form to be told over email that your cancer spread to other parts of your body, or perhaps that the RAI didn't work at all. Viv said she'd go with me to my appt. My mom will most likely want to come as well - the more support I have the better, esp if it is not so good news.
So, I guess all I can do is sit tight for the next two weeks. Holy smokes! - what kind of pain does my dad have to go through now so that I don't have to stress out over this for the next two weeks? He's already had the two worst health scares possible - heart bypass, minor stroke - on my behalf, so it seems. Hopefully nothing will affect him this time, or ever again. I don't think he could take any other health problems right now anyway. I know I couldn't.
I also have a ThyCa meeting this Thursday, so hopefully they can give me some insight into the cryptic response from my ENDO. I can feel a melt down coming on...
"there were no major findings. we will discuss some additional tests at your f/u visit in 2 weeks. thanks. Dr C."
Well, that reply seems to be worse than not finding out anything until my appt 2 weeks from now! It could still go either way, but the part about more tests is what worries me. And what's with the no major findings? Does that mean nothing showed up at all? Ugh! Then again, I guess it wouldn't be good form to be told over email that your cancer spread to other parts of your body, or perhaps that the RAI didn't work at all. Viv said she'd go with me to my appt. My mom will most likely want to come as well - the more support I have the better, esp if it is not so good news.
So, I guess all I can do is sit tight for the next two weeks. Holy smokes! - what kind of pain does my dad have to go through now so that I don't have to stress out over this for the next two weeks? He's already had the two worst health scares possible - heart bypass, minor stroke - on my behalf, so it seems. Hopefully nothing will affect him this time, or ever again. I don't think he could take any other health problems right now anyway. I know I couldn't.
I also have a ThyCa meeting this Thursday, so hopefully they can give me some insight into the cryptic response from my ENDO. I can feel a melt down coming on...
Monday, July 26, 2010
Photowalk 2010
I've been playing chauffeur to my parents the past couple of days. I was looking for something to do on Saturday so I had a reason to leave and come back for them, so my sister, Viv, told me about a worldwide event called "PhotoWalk", and luckily for me there were three locations for this event in SD. Two of the three walks in SD, ComiCon and Little Italy, were full.So I signed up for the walk in Ocean Beach (OB). We started at the OB Pier. I walked down by the beach then on some of the side streets and down a few alleys.
It was a lot of walking, but I think I got some pretty good shots on my camera and cell phone. Below are a few of my favorite shots:
I have not decided if I will submit any of my photos for judging.
It was a lot of walking, but I think I got some pretty good shots on my camera and cell phone. Below are a few of my favorite shots:
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| OB Pier (Nikon S60) |
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| Below OB Pier (Nikon S60) |
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| Seagull and cups (Nikon S60) |
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| Bike rack inside Jungal Java (EVO 4G) |
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| Motorcycles - poster fileter (EVO 4G) |
I have not decided if I will submit any of my photos for judging.
Saturday, July 24, 2010
What is 'normal'?
In my search for my new 'normal', I have come to realize that even my former 'normal' was not so normal since my thyroid issues had gone undetected for who knows how long. So I'm hoping that my new 'normal' will be a lot better than my former 'normal' was, because honestly, my former 'normal' really sucked.
I think I have mentioned before that many mornings I would wake up and really not want to do anything, no matter if it was a week day or a weekend. I had problems losing weight. My periods were never predictable for more than three or four months at a time. My energy level was never so great either, but I don't think I could really tell because I was taking a good multivitamin which kept me energized throughout the day. But I could never get a good amount of sleep, unless I was sleeping in on the weekend - that could have been work-related stress.
Now, post thyroid surgery, RAI, and on thyroid hormone replacement therapy, where am I? Well, my periods have not stabilized, yet. The weight issue is stable, but I still need to lose a considerable amount of pounds to get down to a healthier weight. Still have bad PMS - a lot more moodier. Energy level is sporadic at best; now when I try to nap, I can't seem to fall asleep most of the time. And the crying, where did that come from? - that is definitely new. And, I seem to have more hair falling off my head than I did before, luckily it is not in clumps. I seem to be less motivated than I was before. It is a sad state of affairs. All I can say is I hope things don't get worse, that this is as low as things can go for me so things can start to get better and I can reach a good, normal balance on everything.
How long will it take? I feel like I need a guarantee that it happens before I go back to work in September. I know, one day at a time, which is not easy when you don't know what day it is sometimes when you wake up each morning. Think positive. Think positive. I can get through this. I will be 'normal' again, and it will be a real 'normal'.
I think I have mentioned before that many mornings I would wake up and really not want to do anything, no matter if it was a week day or a weekend. I had problems losing weight. My periods were never predictable for more than three or four months at a time. My energy level was never so great either, but I don't think I could really tell because I was taking a good multivitamin which kept me energized throughout the day. But I could never get a good amount of sleep, unless I was sleeping in on the weekend - that could have been work-related stress.
Now, post thyroid surgery, RAI, and on thyroid hormone replacement therapy, where am I? Well, my periods have not stabilized, yet. The weight issue is stable, but I still need to lose a considerable amount of pounds to get down to a healthier weight. Still have bad PMS - a lot more moodier. Energy level is sporadic at best; now when I try to nap, I can't seem to fall asleep most of the time. And the crying, where did that come from? - that is definitely new. And, I seem to have more hair falling off my head than I did before, luckily it is not in clumps. I seem to be less motivated than I was before. It is a sad state of affairs. All I can say is I hope things don't get worse, that this is as low as things can go for me so things can start to get better and I can reach a good, normal balance on everything.
How long will it take? I feel like I need a guarantee that it happens before I go back to work in September. I know, one day at a time, which is not easy when you don't know what day it is sometimes when you wake up each morning. Think positive. Think positive. I can get through this. I will be 'normal' again, and it will be a real 'normal'.
Friday, July 23, 2010
Thursday, July 22, 2010
Monetary motivation
I guess money does talk. The whole week I've been waiting for reimbursement checks for my chiro visits. Well they finally arrived today and sure enough, I quickly jump in the shower and get ready to deposit them at my banks. Until I remember the reason why I hate going to the banks.
No, it is not having to stand in line to make my deposits, that's not why. The reason I'm afraid to go into a bank these days is the rash of hold ups that happen each week here in SoCal. In fact the one I fear the most is this guy called the "Geezer Bandit" because he is dressed like an old guy, sometimes toting an oxygen tank with him as he holds up the bank. Now, I'm not too afraid to go one of my banks because it has 'bandit doors' set up which detect concealed weapons, but most of all prevents more than one person from leaving or entering the bank at a time - you can't just run in or out of the doors otherwise I think you actually are detained between the two entry doors. Pretty neat. My other bank, which is right across the street, doesn't have this new technology (they told me it is probably because the first bank I mentioned gets robbed a lot - actually not b/c I happen to know that almost all stand alone branches for that bank have this installed, come on, loss prevention! and safety for it's employees), so I worry the most whenever I have to go to this second bank. But, time is money, and the money needs to be deposited, so I should just go and take my chances, I guess. I haven't seen anything in the news lately about the "Geezer Bandit" and I think the last time he hit was about three weeks ago at a different bank in my community, so he's probably not going to hit another bank around here, but you never know.
No, it is not having to stand in line to make my deposits, that's not why. The reason I'm afraid to go into a bank these days is the rash of hold ups that happen each week here in SoCal. In fact the one I fear the most is this guy called the "Geezer Bandit" because he is dressed like an old guy, sometimes toting an oxygen tank with him as he holds up the bank. Now, I'm not too afraid to go one of my banks because it has 'bandit doors' set up which detect concealed weapons, but most of all prevents more than one person from leaving or entering the bank at a time - you can't just run in or out of the doors otherwise I think you actually are detained between the two entry doors. Pretty neat. My other bank, which is right across the street, doesn't have this new technology (they told me it is probably because the first bank I mentioned gets robbed a lot - actually not b/c I happen to know that almost all stand alone branches for that bank have this installed, come on, loss prevention! and safety for it's employees), so I worry the most whenever I have to go to this second bank. But, time is money, and the money needs to be deposited, so I should just go and take my chances, I guess. I haven't seen anything in the news lately about the "Geezer Bandit" and I think the last time he hit was about three weeks ago at a different bank in my community, so he's probably not going to hit another bank around here, but you never know.
Wednesday, July 21, 2010
Still looking for my motivation
It was difficult to get motivated to do anything this morning. I only had two things to do today, two things that I conveniently managed to not do yesterday. But once again I managed to not get them done today either. I was a bit frustrated with myself especially since I knew nothing would be done this evening either. The only thing I managed to do today was send a text bday greeting to my friend Jen. What is wrong with me? Well, at least I didn't have a melt down for the first half of the day.
I decided that I needed to go to NikeRunClub this evening because I also have not been able to motivate myself to run whether in the morning or the evening, as I had planned to, for the past couple of days. But I know darn well that if I go to run club, then there would be no way to get out of running. Other than the short stints on the treadmill at the gym last Thursday evening and about a month ago, the last time I ran was on April 21st - that was three months ago. So, wasn't sure how far or how long I'd be able to go this time out, but was pleasantly surprised that I made it an entire mile without stopping. It was exhilarating, so hopefully this will help me stay motivated to at least run on a more regular basis. Maybe this will be the first of my new 'normal' life?
Ugh! Then on the way home I almost started to cry. WTF! - you'd think with all the endorphins running through my body after a run that I'd be on a bit of a high driving home, but no, I almost had the weepies again. I managed to hold it in though. Yesterday was a cry-free day, but Monday my dad was having a tough day, so I almost got caught up in a cry. Too bad I can't funnel my crying outbursts into the drive to do other things, maybe get my mojo back.
I decided that I needed to go to NikeRunClub this evening because I also have not been able to motivate myself to run whether in the morning or the evening, as I had planned to, for the past couple of days. But I know darn well that if I go to run club, then there would be no way to get out of running. Other than the short stints on the treadmill at the gym last Thursday evening and about a month ago, the last time I ran was on April 21st - that was three months ago. So, wasn't sure how far or how long I'd be able to go this time out, but was pleasantly surprised that I made it an entire mile without stopping. It was exhilarating, so hopefully this will help me stay motivated to at least run on a more regular basis. Maybe this will be the first of my new 'normal' life?
Ugh! Then on the way home I almost started to cry. WTF! - you'd think with all the endorphins running through my body after a run that I'd be on a bit of a high driving home, but no, I almost had the weepies again. I managed to hold it in though. Yesterday was a cry-free day, but Monday my dad was having a tough day, so I almost got caught up in a cry. Too bad I can't funnel my crying outbursts into the drive to do other things, maybe get my mojo back.
Tuesday, July 20, 2010
How does my neck look? 7/20/10
Today is my niece's bday. Micah. She is 20 today. I remember when I turned 20 - I just started my junior year at UCSD. I was enjoying all my upper division classes and was hoping to do something in my chosen field after college. I wanted to make a difference, make people's lives better. I wanted to create more livable communities in my home town. Twenty-one years later I have not done anything even close to that, but I haven't counted myself out for making my own mark in the world. Not yet.
Every now and then I wonder what my life would be like in a parallel universe, you know, the ones where you still are who you are, but your life went in a different direction. Like, what if I didn't 'throw away' that one guy - would it have lasted all these years?, or what if I did go to grad school 10 years ago - would I have crossed paths with the 'throw away guy' or would I be presenting a paper on ancient Mayan city planning?, or what if I moved to Spain six years ago instead of moving back to San Diego? If I did anything different, would I still have thyroid cancer? I honestly think that I would. It just seems that no matter what path you take, you will somehow end up where you need to be at certain times of your life, and if not, it catches up to you later on. Would I do anything different? No. I think my different experiences would have had a great affect on how I am I dealing with my health issues now. Or, maybe not. It's fun to think about though, all the 'what ifs' and 'what could have beens.'
Anyway, I decided to try rubbing castor oil on the area around my scar to see if it would take off any of the extraneous derma bond. I thought some of it was coming off, but it turns out I was just taking off the top layer of skin - ouch! Gotta love the self-inflicted pain.
Before rubbing on the castor oil:
Right after rubbing on the castor oil:
Result thereof:
So, how does my neck look?
Every now and then I wonder what my life would be like in a parallel universe, you know, the ones where you still are who you are, but your life went in a different direction. Like, what if I didn't 'throw away' that one guy - would it have lasted all these years?, or what if I did go to grad school 10 years ago - would I have crossed paths with the 'throw away guy' or would I be presenting a paper on ancient Mayan city planning?, or what if I moved to Spain six years ago instead of moving back to San Diego? If I did anything different, would I still have thyroid cancer? I honestly think that I would. It just seems that no matter what path you take, you will somehow end up where you need to be at certain times of your life, and if not, it catches up to you later on. Would I do anything different? No. I think my different experiences would have had a great affect on how I am I dealing with my health issues now. Or, maybe not. It's fun to think about though, all the 'what ifs' and 'what could have beens.'
Anyway, I decided to try rubbing castor oil on the area around my scar to see if it would take off any of the extraneous derma bond. I thought some of it was coming off, but it turns out I was just taking off the top layer of skin - ouch! Gotta love the self-inflicted pain.
Before rubbing on the castor oil:
Right after rubbing on the castor oil:
Result thereof:
So, how does my neck look?
Monday, July 19, 2010
Lazy (crazy?) Sunday
Not sure what is going on with me. Maybe it is the hot weather? Maybe I am just struggling to get back into my normal routine, after all, nothing is normal about my body anymore, is it?
Did my 10 mins of 'slow walking'. I know I didn't explain what that was yesterday, so here's my best description:
Stand, barefoot along a line in the ground/carpet/tile (as a guide), feet together. Bend your knees, straighten your back, including the small of your back; drop and relax your shoulders. Separate your knees so that your fist could fit between them, at all times. Step forward with either foot, start with the toes, then slowly continue to lift that foot, with your heel being that very last part of your foot that comes off the ground. Slowly, place it about 1" in front of your other foot, but along the guide line in the floor; plant this foot squarely on the floor. Once your foot is on the ground, shift your weight onto that foot/leg. This should take 30 seconds to complete. Now do the same exact thing with your other foot, also taking 30 seconds to complete the step. If you feel any pain during the 30 seconds, slow it down where it hurts. Remember to keep your knees a fist width apart, your back as straight as possible, and your shoulders relaxed. Depending on where the weakness is in your legs, that is where it will hurt the most, so the exercise will feel different for everyone. For me, I get a lot of pain along the inner part of my knees.
I made it to pilates (my abs hurt a lot less afterward), did 1.5 mile on a stationary bike, then stretched. I thought maybe I could either walk Frankie or run at the park this evening, but I didn't quite get around to doing either. Lazy, I guess. I did get a nap in when I got home though, and I'm feeling pretty exhausted right now, so I must have done just enough today.
So I was PMS-ing after all, but not so sure why I'm still very emotional even after my monthly reminder has arrived, early. Why all the crying? I don't even know why I'm crying, but it happens a lot when I'm driving, and has been pretty consistent for the past two, maybe three days. Could this be depression? I can't explain it, but I'll just be driving along, then all of the sudden BAM! I start to feel a bit of desperation and then tears are running down my cheeks. I feel like a mess, so I don't go home, I just continue to drive (yup, this is why I ended up at the beach yesterday). Sometimes I can easily stop crying, other times it continues for a few minutes. WTF! I don't mind crying if I have a good enough reason to cry, but I don't really think I have one right now. This is crazy.
As for my neck, I am still getting odd sensations along my scar. I thought it might be from putting stuff like Vaseline or sunblock on it. Sometimes it feels like I'm being strangled. Other times it feels like pins and needles all along the scar, with little tiny shocks here and there. The scar thing I'm sure is just normal healing stuff, after all, my surgeries were just two weeks apart, going through the same incision area. But the crying thing?!? not so sure where my little melt downs are coming from. I just want to be normal again, or closer to what I remember to be normal. Although I think I need to remember that my new 'normal' will most likely not be the same as my former 'normal'.
Did my 10 mins of 'slow walking'. I know I didn't explain what that was yesterday, so here's my best description:
Stand, barefoot along a line in the ground/carpet/tile (as a guide), feet together. Bend your knees, straighten your back, including the small of your back; drop and relax your shoulders. Separate your knees so that your fist could fit between them, at all times. Step forward with either foot, start with the toes, then slowly continue to lift that foot, with your heel being that very last part of your foot that comes off the ground. Slowly, place it about 1" in front of your other foot, but along the guide line in the floor; plant this foot squarely on the floor. Once your foot is on the ground, shift your weight onto that foot/leg. This should take 30 seconds to complete. Now do the same exact thing with your other foot, also taking 30 seconds to complete the step. If you feel any pain during the 30 seconds, slow it down where it hurts. Remember to keep your knees a fist width apart, your back as straight as possible, and your shoulders relaxed. Depending on where the weakness is in your legs, that is where it will hurt the most, so the exercise will feel different for everyone. For me, I get a lot of pain along the inner part of my knees.
I made it to pilates (my abs hurt a lot less afterward), did 1.5 mile on a stationary bike, then stretched. I thought maybe I could either walk Frankie or run at the park this evening, but I didn't quite get around to doing either. Lazy, I guess. I did get a nap in when I got home though, and I'm feeling pretty exhausted right now, so I must have done just enough today.
So I was PMS-ing after all, but not so sure why I'm still very emotional even after my monthly reminder has arrived, early. Why all the crying? I don't even know why I'm crying, but it happens a lot when I'm driving, and has been pretty consistent for the past two, maybe three days. Could this be depression? I can't explain it, but I'll just be driving along, then all of the sudden BAM! I start to feel a bit of desperation and then tears are running down my cheeks. I feel like a mess, so I don't go home, I just continue to drive (yup, this is why I ended up at the beach yesterday). Sometimes I can easily stop crying, other times it continues for a few minutes. WTF! I don't mind crying if I have a good enough reason to cry, but I don't really think I have one right now. This is crazy.
As for my neck, I am still getting odd sensations along my scar. I thought it might be from putting stuff like Vaseline or sunblock on it. Sometimes it feels like I'm being strangled. Other times it feels like pins and needles all along the scar, with little tiny shocks here and there. The scar thing I'm sure is just normal healing stuff, after all, my surgeries were just two weeks apart, going through the same incision area. But the crying thing?!? not so sure where my little melt downs are coming from. I just want to be normal again, or closer to what I remember to be normal. Although I think I need to remember that my new 'normal' will most likely not be the same as my former 'normal'.
Sunday, July 18, 2010
Needles and 'slow walking'
My abs started hurting, from my Thursday night pilates class, at my Friday afternoon chiro appt. More pain this morning when I got up, and again at my acupuncture appt. Even laughter has been painful! No pain, no gain.
I was a bit surprised that I was told, at my acupuncture appt, not to run on a treadmill or in my Nike Free's for awhile. Before my surgeries, I'd do a road run on Wednesday evenings, then take it to the treadmill at the gym after pilates on Thursday nights and Sunday mornings. I had also been having alternating knee pain - one knee would hurt for a few weeks, then the other knee would hurt for a few weeks - during my runs for sometime. They told me it was most likely because my knees, hips, and ankles aren't aligned properly (something I was also told when I started having knee issues in SF back in 1997). They said I could try something called 'slow walking' or 'mud walking' which is used by a lot of martial arts experts to strengthen their stances, but it would take a while for the re-alignment to happen, and I will probably feel a different kind of pain in my knees as my body adjusts to the correct alignment. I'm pretty much game for anything that doesn't require that I put more chemicals in my body (hence my affinity for back cracking and needle visits), so I'm going to give it a go.
Good thing I was able to nap a little after they put the needles in because I had the energy and motivation to go to the beach to take some pictures, walk around, and watch the sun go down - normal weekend activities on a hot San Diego day. It's already after midnight and I feel like I'll be able to fall asleep easily when I finish this post. Must be the needles doing their job!
Scripps Pier
Sunset at Wind and Sea
I forgot to include this with Friday's post, so here's a couple of shots from the Del:
(sorry, this one looks a bit lop-sided!)
I was a bit surprised that I was told, at my acupuncture appt, not to run on a treadmill or in my Nike Free's for awhile. Before my surgeries, I'd do a road run on Wednesday evenings, then take it to the treadmill at the gym after pilates on Thursday nights and Sunday mornings. I had also been having alternating knee pain - one knee would hurt for a few weeks, then the other knee would hurt for a few weeks - during my runs for sometime. They told me it was most likely because my knees, hips, and ankles aren't aligned properly (something I was also told when I started having knee issues in SF back in 1997). They said I could try something called 'slow walking' or 'mud walking' which is used by a lot of martial arts experts to strengthen their stances, but it would take a while for the re-alignment to happen, and I will probably feel a different kind of pain in my knees as my body adjusts to the correct alignment. I'm pretty much game for anything that doesn't require that I put more chemicals in my body (hence my affinity for back cracking and needle visits), so I'm going to give it a go.
Good thing I was able to nap a little after they put the needles in because I had the energy and motivation to go to the beach to take some pictures, walk around, and watch the sun go down - normal weekend activities on a hot San Diego day. It's already after midnight and I feel like I'll be able to fall asleep easily when I finish this post. Must be the needles doing their job!
Scripps Pier
Sunset at Wind and Sea
I forgot to include this with Friday's post, so here's a couple of shots from the Del:
(sorry, this one looks a bit lop-sided!)
Friday, July 16, 2010
Another hot day...at the Del
I miss last weeks' colder weather. It was a few degrees hotter today than it was yesterday, but who could tell? I only had two things planned for the day - oil change and chiro appt. I had four hours to kill between appts, so I decided to go to Coronado, check out the Hotel Del. I took me about an hour to get to the hotel (as usual traffic on Orange Ave was jam packed) and find decent street parking. By the time I finally parked my car my jeans felt like they were glued to my leather seats!
It was nice to walk around the Del. A lot has changed in the past 16 years. The outdoor restaurant I used to work at has a different name. As I walked by the area that I used to work at, I recognized two of the bus boys and one of the waiters - amazingly they all look the same, just a little older. The tennis courts are gone. All the bushes outside the back parking lot are now gone. I think they even moved the Windsor Cottage closer to the main part of the hotel. I headed inside to the shops to escape the heat outside. As I walked back to my car, melting in the heat, I remembered some interesting events that happened while I worked at the Del - an episode of Baywatch was filmed there (I think there was supposed to be a ghost in the story line), the then Governor of Arkansas, yes, President Clinton, dined at my restaurant, and I got to bring him some dinner rolls!, and the summer nights were beautiful the first year I worked there since a volcano in the Philippines had erupted. It seemed like a life time ago that I had worked there.
By the time I got home after my chiro appt I was completely wiped out, but I'm glad I decided to be a tourist and walk around the Del on a hot summer day.
It was nice to walk around the Del. A lot has changed in the past 16 years. The outdoor restaurant I used to work at has a different name. As I walked by the area that I used to work at, I recognized two of the bus boys and one of the waiters - amazingly they all look the same, just a little older. The tennis courts are gone. All the bushes outside the back parking lot are now gone. I think they even moved the Windsor Cottage closer to the main part of the hotel. I headed inside to the shops to escape the heat outside. As I walked back to my car, melting in the heat, I remembered some interesting events that happened while I worked at the Del - an episode of Baywatch was filmed there (I think there was supposed to be a ghost in the story line), the then Governor of Arkansas, yes, President Clinton, dined at my restaurant, and I got to bring him some dinner rolls!, and the summer nights were beautiful the first year I worked there since a volcano in the Philippines had erupted. It seemed like a life time ago that I had worked there.
By the time I got home after my chiro appt I was completely wiped out, but I'm glad I decided to be a tourist and walk around the Del on a hot summer day.
Thursday, July 15, 2010
How does my neck look? 7/15/10
I think I did way too much today, and I'm feeling it now. The hot/humid weather we are having this week didn't help either.
I went with my parents to my dad's Coumadin appt, finished reading 'Catching Fire', took Frankie to Noah's in PB for a bath, then managed to go to the gym for pilates and a short jaunt on the treadmill. It probably doesn't seem like a lot to most people, but it is a lot for me since I have only managed to do one, sometimes two activities each day since I my RAI dose at the beginning of this month. Amazingly it was not until my RAI dose that I finally started to feel severely hypothyroid. I don't want to over do it, but I think I need to see how much I can do so I can work myself back up to what would be expected of me during a normal (work) day.
Some good news for my dad yesterday was that he only needs to wear his heart monitor for 30 days (so by August 3rd he graduates from it!), and today at his appt his blood level is closer to what they'd like to see for his anticoagulant level. However, he over did it on our walk last night as he some how injured his lower back / top of his right glute. At least his attitude was much better today.
Here a photo of Frankie on the way back from Noah's. He's got the most beautiful blue eyes I've ever seen on a dog.
I took this picture of my scar outside because it was hot and sunny this morning. So, how does my neck look?
I went with my parents to my dad's Coumadin appt, finished reading 'Catching Fire', took Frankie to Noah's in PB for a bath, then managed to go to the gym for pilates and a short jaunt on the treadmill. It probably doesn't seem like a lot to most people, but it is a lot for me since I have only managed to do one, sometimes two activities each day since I my RAI dose at the beginning of this month. Amazingly it was not until my RAI dose that I finally started to feel severely hypothyroid. I don't want to over do it, but I think I need to see how much I can do so I can work myself back up to what would be expected of me during a normal (work) day.
Some good news for my dad yesterday was that he only needs to wear his heart monitor for 30 days (so by August 3rd he graduates from it!), and today at his appt his blood level is closer to what they'd like to see for his anticoagulant level. However, he over did it on our walk last night as he some how injured his lower back / top of his right glute. At least his attitude was much better today.
Here a photo of Frankie on the way back from Noah's. He's got the most beautiful blue eyes I've ever seen on a dog.
I took this picture of my scar outside because it was hot and sunny this morning. So, how does my neck look?
Wednesday, July 14, 2010
OPP, or rather OPMP
While I wait patiently to hear the results of my RAI and WBS, let's talk about other people's medical problems, or OPMP.
First off, there's my dad. If you've been following along with my blog, you know my dad has had a triple bypass and a minor stroke all within the last three months. I have been trying to encourage my dad to see beyond what he feels are his new lifelong limitations brought on by these two major events, such as being placed on Coumadin and having to wear a monitor for a couple of months, doing PT to strengthen his legs, and having to change his diet to keep his diabetes, cholesterol levels, and high blood pressure in check. He always seems to be looking for something to blame his health issues on, to the point that I'm really surprised he hasn't openly blamed God for what he's been going through.
Growing up, my dad always encouraged me and my siblings to take things head on, whether it was school, sports, or our careers, he has always been there to tell us that no matter how bad we thought things were, something good was always around the corner for us, we just had to have faith. So yesterday afternoon I had to ask him, "what happened to that man that used to encourage us when we were down? Where did this man go because he sure wasn't here right now." My dad was quiet for a bit. It just irks me because he'll take a step forward, then take two backward. I told him there's no going back in time, you can't change anything that already happened. You just have to accept it and decide if you are going to let it take over your life or if you are going to do something about it. I've had to do this with my thyroid cancers, by default my mom has to do this because she has two patients to take care of (me and my dad), why on earth can't my dad wrap his head around this?!? I hate talking to my dad like that but someone has to say it, every day, it seems, until it will finally register for him. If I have to, I'll do it a different way every day because I'm not giving up on my dad, so he better not be giving up on himself.
The next OPMP:
While doing errands downtown with my parents yesterday afternoon, I ran into a neighbor that I used to ride the bus with into town. After our bus' route and schedule changed, she ended up taking an earlier bus and I ended up driving to work due to working longer hours, so we would only see each other on the streets downtown every now and then. She of course asked how I was, so I told her I was out on disability because I'm in the middle of thyroid cancer treatment. She mentioned that her doctor said she had a heart murmur and she was being referred to a cardiologist, but wasn't planning on going. So I told her the story about my dad, how a harmless cardiac catheterization turned into him needing triple bypass surgery. Not that she would need that, but my dad was very lucky that they caught the blockages before he had a heart attack. Both of my parents encouraged her to go to this appointment to make sure it wasn't anything serious. I asked if her son was back for the summer (he's an Engineering student at UC Irvine), and she said no, so I told her that if she wanted someone to go with her to the appointment, I would go with her. I think I was scaring her at this point, but I told her how it was good to have my mom with me at my first ENT consult appt because I cried through the whole thing. So I told her to call me or knock on our door to let me know when her appt is so I can go with her. I really do hope she makes that appt and take me up on my offer to go with her. Better to find out now while you still have time to correct it before it's too late and you no longer have that option.
My advice to anyone who gets distressing news from their primary care physician is take the referral to the specialist and make that appointment. Before your appt, do some internet research so you have a basic idea of what the problem might be so you are not completely floored if the specialist has alarming news for you. Most importantly, take a friend, relative, or your spouse with you - someone who can take notes and ask questions if for some reason you are unable to. Had I known that my biopsy uncovered a 'hurthle cell neoplasm', I probably would not have cried through my first ENT consult, but I had this feeling that I was going to need my mommy to be with me at that appt, so I asked her to go with me. I can't even imagine how much worse that appt would have been if I had to sit there, all by myself, taking in everything my ENT was telling me.
First off, there's my dad. If you've been following along with my blog, you know my dad has had a triple bypass and a minor stroke all within the last three months. I have been trying to encourage my dad to see beyond what he feels are his new lifelong limitations brought on by these two major events, such as being placed on Coumadin and having to wear a monitor for a couple of months, doing PT to strengthen his legs, and having to change his diet to keep his diabetes, cholesterol levels, and high blood pressure in check. He always seems to be looking for something to blame his health issues on, to the point that I'm really surprised he hasn't openly blamed God for what he's been going through.
Growing up, my dad always encouraged me and my siblings to take things head on, whether it was school, sports, or our careers, he has always been there to tell us that no matter how bad we thought things were, something good was always around the corner for us, we just had to have faith. So yesterday afternoon I had to ask him, "what happened to that man that used to encourage us when we were down? Where did this man go because he sure wasn't here right now." My dad was quiet for a bit. It just irks me because he'll take a step forward, then take two backward. I told him there's no going back in time, you can't change anything that already happened. You just have to accept it and decide if you are going to let it take over your life or if you are going to do something about it. I've had to do this with my thyroid cancers, by default my mom has to do this because she has two patients to take care of (me and my dad), why on earth can't my dad wrap his head around this?!? I hate talking to my dad like that but someone has to say it, every day, it seems, until it will finally register for him. If I have to, I'll do it a different way every day because I'm not giving up on my dad, so he better not be giving up on himself.
The next OPMP:
While doing errands downtown with my parents yesterday afternoon, I ran into a neighbor that I used to ride the bus with into town. After our bus' route and schedule changed, she ended up taking an earlier bus and I ended up driving to work due to working longer hours, so we would only see each other on the streets downtown every now and then. She of course asked how I was, so I told her I was out on disability because I'm in the middle of thyroid cancer treatment. She mentioned that her doctor said she had a heart murmur and she was being referred to a cardiologist, but wasn't planning on going. So I told her the story about my dad, how a harmless cardiac catheterization turned into him needing triple bypass surgery. Not that she would need that, but my dad was very lucky that they caught the blockages before he had a heart attack. Both of my parents encouraged her to go to this appointment to make sure it wasn't anything serious. I asked if her son was back for the summer (he's an Engineering student at UC Irvine), and she said no, so I told her that if she wanted someone to go with her to the appointment, I would go with her. I think I was scaring her at this point, but I told her how it was good to have my mom with me at my first ENT consult appt because I cried through the whole thing. So I told her to call me or knock on our door to let me know when her appt is so I can go with her. I really do hope she makes that appt and take me up on my offer to go with her. Better to find out now while you still have time to correct it before it's too late and you no longer have that option.
My advice to anyone who gets distressing news from their primary care physician is take the referral to the specialist and make that appointment. Before your appt, do some internet research so you have a basic idea of what the problem might be so you are not completely floored if the specialist has alarming news for you. Most importantly, take a friend, relative, or your spouse with you - someone who can take notes and ask questions if for some reason you are unable to. Had I known that my biopsy uncovered a 'hurthle cell neoplasm', I probably would not have cried through my first ENT consult, but I had this feeling that I was going to need my mommy to be with me at that appt, so I asked her to go with me. I can't even imagine how much worse that appt would have been if I had to sit there, all by myself, taking in everything my ENT was telling me.
Tuesday, July 13, 2010
RAI - Day 12, hour 22
I managed to get some sleep last night, despite spending most of the afternoon and evening yesterday glued to "Catching Fire", which is the book that follows "The Hunger Games." However, even after taking my meds at the right time this morning, I still managed to stay in my PJs until an hour ago when I decided I needed to take a shower and do something today. My energy level seems to be Ok today, I just don't have the motivation to do anything. I'm also a bit moodier than yesterday. Still think it's a week to early to be PMS, so I figure this is just another change my body needs to adjust to after all it has been through in the past two and a half months. When will the brain fog improve? - have no idea.
It has almost been two weeks since I got my RAI dose. I can still detect a little swelling in my neck. I'm not double flushing after each toilet use. I'm eating normal. I'm cleared for people contact and going to the gym. All the pets are home. It has been one day after my second body scan. The suspense is killing me. Wonder when my ENDO will call me. I give him until Thursday afternoon, then I'll either call his office or email him. Meantime, I guess I should work a little on being more motivated and perhaps give myself a few things 'to do' this week, see if that helps.
It has almost been two weeks since I got my RAI dose. I can still detect a little swelling in my neck. I'm not double flushing after each toilet use. I'm eating normal. I'm cleared for people contact and going to the gym. All the pets are home. It has been one day after my second body scan. The suspense is killing me. Wonder when my ENDO will call me. I give him until Thursday afternoon, then I'll either call his office or email him. Meantime, I guess I should work a little on being more motivated and perhaps give myself a few things 'to do' this week, see if that helps.
Monday, July 12, 2010
RAI - Day 11, hour 22
I only had to do two scans this time. After the scans, she told me that sometimes patients are scheduled for routine scans every year or so, so not to be too alarmed if I come back once a year. Then she said the Radiologist will need to review all the scans before they can determine if additional scans need to be taken, or if I get to go home. I was allowed to look at the scans again, just no questions. I saw a single black dot and some clouded areas below the single dot in what I'm guessing was my lung/chest area. All she said was sometimes the normal things don't look normal on the scans. A few minutes later they told me I could go home because they got all the scans they needed. Yay! Thank goodness the part of my treatment is over. I kept on praying and visualizing the whole time that all the thyroid cancer cells were completely gone. I really don't want to go through the low-iodine diet and RAI again, which could be asking for a lot, I know, but nevertheless it is what I've been praying for. Hopefully I hear the RAI/WBS results in the next couple of days. I really don't know how long I need to wait before I hear anything.
Sunday, July 11, 2010
RAI - Day 10, hour 22
Wasn't able to fall asleep last night either, so I kept on reading 'The Hunger Games' until 3am. When my alarm went off at 7am, I managed to turn it off, but fell asleep again until 7:45am when I got up because I realized I had not taken my Levoxyl yet.
According to my (evil) WiiFit, I gained about 2 lbs from two days ago. Not so surpised since I've been ravenous for the past couple of days, and I have not exactly been eating on plan (WW). I think I'm just PMS-ing. My cycle has not been the same since my first surgery, and it does seem a little early for PMS-ing this month, so maybe my body is just happy to be eating normal food again?!? Anyway, after seeing the weight gain, I decided to do some stretching, get in a few downward dogs and a little pilates. Maybe I'll go on a walk after the World Cup final, if it is not too sunny/warm.
So, World Cup final - Netherlands v Spain. 15 mins into the second half and it is still a scoreless tie. Spain has been looking much better, to me at least, than Holland. I'm rooting for Spain because they have never won a World Cup, and of course because my great-grand-mother on my dad's side was Spanish - pure Castillian. Go Spain!
According to my (evil) WiiFit, I gained about 2 lbs from two days ago. Not so surpised since I've been ravenous for the past couple of days, and I have not exactly been eating on plan (WW). I think I'm just PMS-ing. My cycle has not been the same since my first surgery, and it does seem a little early for PMS-ing this month, so maybe my body is just happy to be eating normal food again?!? Anyway, after seeing the weight gain, I decided to do some stretching, get in a few downward dogs and a little pilates. Maybe I'll go on a walk after the World Cup final, if it is not too sunny/warm.
So, World Cup final - Netherlands v Spain. 15 mins into the second half and it is still a scoreless tie. Spain has been looking much better, to me at least, than Holland. I'm rooting for Spain because they have never won a World Cup, and of course because my great-grand-mother on my dad's side was Spanish - pure Castillian. Go Spain!
Saturday, July 10, 2010
RAI - Day 10, hour 6 / How does my neck look? 7/10/10
My energy level this morning after breakfast and my walk was very low. Driving home all I could think about was that I wanted to go to sleep. Sadly, when I got home and tried to take a nap, I couldn't fall asleep! I hope this means I'll be able to sleep well tonight.
My neck has been feeling better these past two days. Last week, every now and then I'd feel a little tingling along my scar, especially when I was lying down. I thought it might just be my blankets rubbing up against it, but half the time my blankets were not even close to my neck. It seems to be less and less numb each week, so my only guess is that perhaps all the feeling is slowly returning??? And, I think the swelling below my chin has finally gone down, so I don't look like Fred Flintstone anymore! I can only hope for the best. I put sunscreen on it before I leave the house (15 SPF), and sometimes before I go to bed I put Vaseline on it - I think that is what my ENT said to use to get the rest of the derma bond to come off. So anyway, how does my neck look?
My neck has been feeling better these past two days. Last week, every now and then I'd feel a little tingling along my scar, especially when I was lying down. I thought it might just be my blankets rubbing up against it, but half the time my blankets were not even close to my neck. It seems to be less and less numb each week, so my only guess is that perhaps all the feeling is slowly returning??? And, I think the swelling below my chin has finally gone down, so I don't look like Fred Flintstone anymore! I can only hope for the best. I put sunscreen on it before I leave the house (15 SPF), and sometimes before I go to bed I put Vaseline on it - I think that is what my ENT said to use to get the rest of the derma bond to come off. So anyway, how does my neck look?
RAI - Day 9, hour 17-20
I managed to get up at 7am, take my Levoxyl, weigh-in on my (evil) WiiFit, then drive out to La Jolla Cove for breakie at the Brockton Villa. I decided on treating myself to their world famous "Coast Toast" with potatoes. It totally hit the spot. I made sure to take my time eating, taking in the scenery, and I even managed to get some reading in (I'm really enjoying 'The Hunger Games'!).
Afterward, I walked and took pictures with my EVO 4G and my Nikon S60 along the trail above the La Jolla Caves that stretched all the way to Torrey Pines Road - I think the trail is called Coast Walk. It went behind some of the most beautiful homes I've even seen (up close) in La Jolla. Who lives in these homes?!? Hopefully my dentist, my ENT, and my ENDO - with the money I've been spending for their services, they better be living the high life!
World famous Brockton Villa 'Coast Toast'
La Jolla Caves
Trail shots
Afterward, I walked and took pictures with my EVO 4G and my Nikon S60 along the trail above the La Jolla Caves that stretched all the way to Torrey Pines Road - I think the trail is called Coast Walk. It went behind some of the most beautiful homes I've even seen (up close) in La Jolla. Who lives in these homes?!? Hopefully my dentist, my ENT, and my ENDO - with the money I've been spending for their services, they better be living the high life!
World famous Brockton Villa 'Coast Toast'
La Jolla Caves
Trail shots
Friday, July 9, 2010
RAI - Day 8 hour 23
My parents are now gone for the weekend. We managed to get a walk in this morning, to 7-11 again, but their lotto machine was down. My dad said his legs felt fine for the whole trek. I'm glad he is getting more comfortable with his recovery schedule and activities. He said he also feels more confident about his condition and what he needs to do, still not happy with the dietary chances he has had to make, but at least his attitude about everything is improving.
As for me, I'm tired of being 'radioactive.' I think it is finally Ok for me to hug people again, stand next to them, and not change/wash my bed linens every day. I'm still careful about doing my own dishes and making sure whatever needs to go down the kitchen drain does, but I'm being careful about not getting anything other than what I'm going to chew and swallow in my mouth, so I pull out all the fish bones, etc. before I start to eat so my saliva doesn't get on it. I probably don't even need to be that vigilant about it anymore, but I'd rather err on the safe side than throw out anything radioactive.
My energy level has been pretty good so far today, but I don't want to push it this evening. I know, it's a Friday evening and I've got no responsibilities whatsoever so I should be out and about, but I think I'm going to stay in and enjoy being by myself. I'd really like to get up early tomorrow morning and go for a walk then for breakie somewhere close to the beach. We'll see how that goes.
My friend, Jen, sent me some books to read. I started to read 'The Hunger Games' last night, and it is quite interesting. Looking forward to a relaxing weekend!
As for me, I'm tired of being 'radioactive.' I think it is finally Ok for me to hug people again, stand next to them, and not change/wash my bed linens every day. I'm still careful about doing my own dishes and making sure whatever needs to go down the kitchen drain does, but I'm being careful about not getting anything other than what I'm going to chew and swallow in my mouth, so I pull out all the fish bones, etc. before I start to eat so my saliva doesn't get on it. I probably don't even need to be that vigilant about it anymore, but I'd rather err on the safe side than throw out anything radioactive.
My energy level has been pretty good so far today, but I don't want to push it this evening. I know, it's a Friday evening and I've got no responsibilities whatsoever so I should be out and about, but I think I'm going to stay in and enjoy being by myself. I'd really like to get up early tomorrow morning and go for a walk then for breakie somewhere close to the beach. We'll see how that goes.
My friend, Jen, sent me some books to read. I started to read 'The Hunger Games' last night, and it is quite interesting. Looking forward to a relaxing weekend!
Thursday, July 8, 2010
RAI - Day 8, hour 1
Energy level is a little better today. I was able to do some errands and go on a walk with my parents (once again to 7-11 because this time my dad wanted to buy lotto tickets). So far I am holding up Ok.
I'm sad though. In 30 minutes someone from my vet's staff will be here to pick up the dogs, Frankie and Niko (my mom's dog). I'm probably not as radioactive as I was last week, but since my parents are out of town this weekend, I still don't think I should be handling their food. Frankie doesn't always eat his meds that are mixed in with his meals, which would mean that I'd need to put the meds in his mouth so he'd swallow them. Argh! I haven't pet either of them since last Thursday morning. We'll be picking them up Monday afternoon, when my parents are back.
The nice thing is that I'll be completely on my own for the weekend. I like the sound of that. But it will be odd not hearing a dog bark when someone knocks at the door or a stranger or another dog walks on the sidewalk in front of our house. I could go for an early morning walk on the beach, then grab breakfast at a nearby cafe, or sleep in (after I've taken my Levoxyl at 7am). I think the World Cup finals are this weekend, so I need to make sure I'm up for that.....so many things to do, so little time.
I'm sad though. In 30 minutes someone from my vet's staff will be here to pick up the dogs, Frankie and Niko (my mom's dog). I'm probably not as radioactive as I was last week, but since my parents are out of town this weekend, I still don't think I should be handling their food. Frankie doesn't always eat his meds that are mixed in with his meals, which would mean that I'd need to put the meds in his mouth so he'd swallow them. Argh! I haven't pet either of them since last Thursday morning. We'll be picking them up Monday afternoon, when my parents are back.
The nice thing is that I'll be completely on my own for the weekend. I like the sound of that. But it will be odd not hearing a dog bark when someone knocks at the door or a stranger or another dog walks on the sidewalk in front of our house. I could go for an early morning walk on the beach, then grab breakfast at a nearby cafe, or sleep in (after I've taken my Levoxyl at 7am). I think the World Cup finals are this weekend, so I need to make sure I'm up for that.....so many things to do, so little time.
Wednesday, July 7, 2010
RAI - Day 7, hour 2
We just had another earthquake or possibly an aftershock from the Easter Day earthquake @ 4:54pm PST. I was standing in the kitchen and heard this rumbling in the ceiling (not unlike what my stomach has been sounding like before toilet fireworks!) that wasn't from passing military aircraft, then all of a sudden the walls started to shake a little. Crazy.
Anyway, happy to report that my digestive problems took a break for most of the day, so far, at least. I was motivated to take a walk with my parents to our local 7-11 so I could buy a Fantasy 5 Lotto ticket for this evening - the jackpot is over $110k. After receiving more of my medical bills this afternoon ($1675.00 for the second surgery), I figure the only way I'm going to be able to pay them off is if I win the lottery. You can't very well win the lottery if you don't buy a ticket. Sadly, I usually only win free play tickets for the lotto drawings, so I exchanged two of them for this evenings' drawing.
Despite the good things about having a PPO, such as if I didn't like the management of my thyroid cancer treatment by my current ENDO, then I could go pretty much anywhere else I wanted to without having to change medical groups, it is still taking a toll on my finances. Dare I admit that sometimes I wish I decided to not even deal with the lump on the left side of my thyroid so I wouldn't be drowning in medical bill debt? Well....yes, sometimes I wish I took that gamble, and other times I just wish I chose the HMO option instead. I'll admit that it is interesting to see what things really cost when you see a doctor. For example, any time they look in your mouth and ask you to say "Ahhhhhhh....", that is considered a surgical procedure (my ENT did this during each visit, and it cost $163 each time!) and you are billed for it if you have a PPO. Costs for office visits and 'saying Ahhhhh....' vary from medical group to medical group. For example, ENT #1 consult, aside from saying 'Ahhhh......' was $394, ENT #2 was $513 for the consult and $309 to say 'Ahhhh...' That being said, my PPO covered a small share each time until I hit my deductible of $2500. So my $24k hospital stay for the second surgery thank fully only costs me $1675. It is still a bit overwhelming every time I get a medical bill. I'm afraid to see how much my RAI pills and the two WBS will cost.
Anyway, happy to report that my digestive problems took a break for most of the day, so far, at least. I was motivated to take a walk with my parents to our local 7-11 so I could buy a Fantasy 5 Lotto ticket for this evening - the jackpot is over $110k. After receiving more of my medical bills this afternoon ($1675.00 for the second surgery), I figure the only way I'm going to be able to pay them off is if I win the lottery. You can't very well win the lottery if you don't buy a ticket. Sadly, I usually only win free play tickets for the lotto drawings, so I exchanged two of them for this evenings' drawing.
Despite the good things about having a PPO, such as if I didn't like the management of my thyroid cancer treatment by my current ENDO, then I could go pretty much anywhere else I wanted to without having to change medical groups, it is still taking a toll on my finances. Dare I admit that sometimes I wish I decided to not even deal with the lump on the left side of my thyroid so I wouldn't be drowning in medical bill debt? Well....yes, sometimes I wish I took that gamble, and other times I just wish I chose the HMO option instead. I'll admit that it is interesting to see what things really cost when you see a doctor. For example, any time they look in your mouth and ask you to say "Ahhhhhhh....", that is considered a surgical procedure (my ENT did this during each visit, and it cost $163 each time!) and you are billed for it if you have a PPO. Costs for office visits and 'saying Ahhhhh....' vary from medical group to medical group. For example, ENT #1 consult, aside from saying 'Ahhhh......' was $394, ENT #2 was $513 for the consult and $309 to say 'Ahhhh...' That being said, my PPO covered a small share each time until I hit my deductible of $2500. So my $24k hospital stay for the second surgery thank fully only costs me $1675. It is still a bit overwhelming every time I get a medical bill. I'm afraid to see how much my RAI pills and the two WBS will cost.
RAI - Day 6, hour 19
Holy diarrhea, Batman!!! I was up until 2am because of hourly toilet fireworks. Was it something I ate yesterday? Was it the radiation still in my body? I don't know for sure. I thought it was more something I ate (I had half of a foot long Subway Turkey Bacon Avocado on omega-3 wheat for lunch, then the rest for dinner. My stomach was more unhappy after dinner, for sure. But, nausea, diarrhea (or constipation) are some of the side affects of RAI.
I just had breakfast and things seem to be copacetic in my stomach right now. Let's hope it stays that way the rest of the day.
I just had breakfast and things seem to be copacetic in my stomach right now. Let's hope it stays that way the rest of the day.
Tuesday, July 6, 2010
RAI - Day 6, hour 2 / WBS #1
Well, that was an interesting experience. I was told to pee before the procedure stared. It was freezing in the scanner room ("to keep the machines happy and the bugs/germs out"). I asked if I could see the scans afterward, which he said was fine, so long as I didn't ask him any questions about them. No problem there, just want to see what lights up where.
Note to self: For the 2nd scan next Monday, remember to not wear capri pants and to wear a thermal top!
He took five "pictures". The first one, of my entire body, took about 30 minutes - the first 10 minutes I lay there as still as possible, the next 20 I was slowly pulled through the scanner. I felt like little people or ants were carrying me through the machine, kinda like the Lilliputians carrying off Gulliver. The only means of entertainment going through my head was a song by Culture Club, I think it's called "Time won't give me time", or at least that is part of the chorus.
Next, he took two more "pictures" at 10 mins each, one with tape markers on my neck and below my ribs and one without the markers. My lower back was killing me at this point, so he let me stretch out my back before the last set of pictures were taken.
In the next room, the very same room I sat in a short five days ago, he took two more pictures, this time five mins each, the first with markers on my neck. My shoulders were at the edge of a pillow so my neck would be angled backwards. Not the most comfy position, but at least it was only for 10 minutes total.
The scans were pretty bare. I could see a faint outline of my body. He showed me four shots, total. On the first "picture I could see black dots gathered in an area that I'm guessing was my neck/thyroid bed area, and one down by my groin area - probably residual radiation from when I peed earlier. The two middle scans showed fuzzy and clear dots clustered once again in my my neck/thyroid bed area. On the last "picture", I saw a black dot that looked like it was in my nose area, along with about three or four distinctive dots in my neck/thyroid bed area. The radiologist that was supposed to review the pictures to make sure they were 'good' had stepped out for lunch, so they said I could go home. On Monday, when the second round of scans are done, they will be able to compare and tell me if they need to do any additional scans or not. Wonder if they will be able to tell me anything next Monday.
Last night I joined the ThyCa email discussion group. Since I've been collecting my used disposable plates and utensils, I posted a question asking when it would be safe to throw out my trash. Wow, never thought I'd be so harshly criticized by my thyroid cancer peers. WTF. Not like I had a lot of time to look into this, and no one, not even the people at my local ThyCa meeting told me otherwise. A few people posted back that I was creating more unnecessary radioactive waste, and that I shouldn't be using plastics because the radiation can easily be washed away with water, that I should cut up all paper towels etc. and flush them down the toilet and into the sewer system, blah, blah, blah. Well, I was only trying to protect my family members that I live with from any unnecessary exposure to radiation, and then there's the whole SoCal drought situation. How much water am I already wasting since I have to flush twice each time I use the toilet, the extra water wasted because I have to thoroughly rinse my hands, the sink and the tub after each use. Now you want me to flush all my used paper towels and what not down the toilet and wash all my used plastic utensils? I can't make anyone happy. Supposedly the half life of my radiation dosage is 8 days, so I'm thinking in 16 days it should be safe to throw out my trash. So, I'm going to triple bag all of my radioactive trash, hang it from one of the rafters in the patio for a couple of weeks then throw it out with the weekly trash. We don't get charged for trash pick up here, but we do get charged a premium for water usage, so sorry all you radioactive-trash-haters, but trash wins over water!
Note to self: For the 2nd scan next Monday, remember to not wear capri pants and to wear a thermal top!
He took five "pictures". The first one, of my entire body, took about 30 minutes - the first 10 minutes I lay there as still as possible, the next 20 I was slowly pulled through the scanner. I felt like little people or ants were carrying me through the machine, kinda like the Lilliputians carrying off Gulliver. The only means of entertainment going through my head was a song by Culture Club, I think it's called "Time won't give me time", or at least that is part of the chorus.
Next, he took two more "pictures" at 10 mins each, one with tape markers on my neck and below my ribs and one without the markers. My lower back was killing me at this point, so he let me stretch out my back before the last set of pictures were taken.
In the next room, the very same room I sat in a short five days ago, he took two more pictures, this time five mins each, the first with markers on my neck. My shoulders were at the edge of a pillow so my neck would be angled backwards. Not the most comfy position, but at least it was only for 10 minutes total.
The scans were pretty bare. I could see a faint outline of my body. He showed me four shots, total. On the first "picture I could see black dots gathered in an area that I'm guessing was my neck/thyroid bed area, and one down by my groin area - probably residual radiation from when I peed earlier. The two middle scans showed fuzzy and clear dots clustered once again in my my neck/thyroid bed area. On the last "picture", I saw a black dot that looked like it was in my nose area, along with about three or four distinctive dots in my neck/thyroid bed area. The radiologist that was supposed to review the pictures to make sure they were 'good' had stepped out for lunch, so they said I could go home. On Monday, when the second round of scans are done, they will be able to compare and tell me if they need to do any additional scans or not. Wonder if they will be able to tell me anything next Monday.
Last night I joined the ThyCa email discussion group. Since I've been collecting my used disposable plates and utensils, I posted a question asking when it would be safe to throw out my trash. Wow, never thought I'd be so harshly criticized by my thyroid cancer peers. WTF. Not like I had a lot of time to look into this, and no one, not even the people at my local ThyCa meeting told me otherwise. A few people posted back that I was creating more unnecessary radioactive waste, and that I shouldn't be using plastics because the radiation can easily be washed away with water, that I should cut up all paper towels etc. and flush them down the toilet and into the sewer system, blah, blah, blah. Well, I was only trying to protect my family members that I live with from any unnecessary exposure to radiation, and then there's the whole SoCal drought situation. How much water am I already wasting since I have to flush twice each time I use the toilet, the extra water wasted because I have to thoroughly rinse my hands, the sink and the tub after each use. Now you want me to flush all my used paper towels and what not down the toilet and wash all my used plastic utensils? I can't make anyone happy. Supposedly the half life of my radiation dosage is 8 days, so I'm thinking in 16 days it should be safe to throw out my trash. So, I'm going to triple bag all of my radioactive trash, hang it from one of the rafters in the patio for a couple of weeks then throw it out with the weekly trash. We don't get charged for trash pick up here, but we do get charged a premium for water usage, so sorry all you radioactive-trash-haters, but trash wins over water!
RAI - Day 5, hour 19 / WBS #1
Getting ready to leave for my first WBS. Lucky underwear, check...feeling lucky, check...uh oh. Hold on just a second. I think my 'lucky' underwear are the same ones I wore to my second surgery, when they found out I had a second flavor of thyroid cancer. Well, guess I can't really consider these undies today to be too lucky. And it's too late to change them now otherwise I'll be running late for my appt, so I'll just keep my fingers crossed and pray for the best possible outcome. I hope they let me look at the scans afterward.
Monday, July 5, 2010
RAI - Day 5 hour 1
Well, sadly the 4th of July ended for me with fireworks in the toilet. Let me just say that it came out the other end and leave it at that. Must have been all the BBQ I had earlier. Went to sleep early hoping that would stop it, and it did, at least until I woke up this morning to take my Levoxyl. Thank goodness it wasn't as explosive as the night before, and it was a one time occurrence this morning. Oddly enough, my stomach still feels uneasy every now and then. I'll have to ask the Radiologist tomorrow at my first WBS if this is a normal side affect, that and my 'swollen' neck.
Still feeling a little low on the energy this morning, as I lay in bed for two hours after downing my thyroid meds.
I think my mom needs a much needed break from cooking for her two patients, so I think I'll see if she wants to get some Chinese food or maybe go to Chick-Fil-A instead of cooking. When I am allowed to have full people contact again, I'm definitely taking my mom for a massage and a mani/pedi.
Looking forward to my WBS tomorrow. I am curious to see what parts of my body light up during the scan.
Sunday, July 4, 2010
RAI - Day 4, hour 1 / How does my neck look? 7/4/2010
Happy 4th of July!!!
I spent a couple of hours at the annual 4th of July picnic for my dad's church group. I'm usually one of the few younger generation that attends, but there's always a hip hop dance competition that is held right next to where they set up their picnic area, so it's something that I always enjoy watching every year. Sadly, this year I didn't get to see much of the dancing since I'd be standing too close to people, but I watched from a distance, enjoyed the music and people watching, and of course enjoyed the food at the picnic. The food is always good, then again, after being on the low-iodine diet for 18 days, everything tastes good. Luckily for me, my favorite cook from my dad's church group was in charge of the BBQ grille, so I made sure I ate as much BBQ as I could handle.
I felt bad telling a lot of people that they couldn't get too close to me, but once they understood why, it was not a problem. Before the parade there were not a lot of people to worry about, but after the parade it seemed like every time I turned around a pregnant lady or a little kid was standing right behind me. I'm less radioactive now than I was yesterday, but I'd rather not chance it with so many people around, so I decided to go home, but not before asking my mom to pack me a to-go plate. She also said she'd stop by the frozen yogurt place for me before they came home so I don't contaminate anyone in the yogurt shop. Thanks, mom.
So I'm home now, safe from contaminating unsuspecting pregnant women and children.
Neck update - when I looked in the mirror this morning, I noticed that the area below my chin looked like it was bulging. Are my salivary glands swollen? The left side doesn't feel as bad as it did the past couple of days, but I tell you, it looks like I gained 30 pounds back just in my neck area. Maybe it's just me being a little too self conscious about it, but you tell me: How does my neck look?
Taken on July 2:
Taken on July 4:
I spent a couple of hours at the annual 4th of July picnic for my dad's church group. I'm usually one of the few younger generation that attends, but there's always a hip hop dance competition that is held right next to where they set up their picnic area, so it's something that I always enjoy watching every year. Sadly, this year I didn't get to see much of the dancing since I'd be standing too close to people, but I watched from a distance, enjoyed the music and people watching, and of course enjoyed the food at the picnic. The food is always good, then again, after being on the low-iodine diet for 18 days, everything tastes good. Luckily for me, my favorite cook from my dad's church group was in charge of the BBQ grille, so I made sure I ate as much BBQ as I could handle.
I felt bad telling a lot of people that they couldn't get too close to me, but once they understood why, it was not a problem. Before the parade there were not a lot of people to worry about, but after the parade it seemed like every time I turned around a pregnant lady or a little kid was standing right behind me. I'm less radioactive now than I was yesterday, but I'd rather not chance it with so many people around, so I decided to go home, but not before asking my mom to pack me a to-go plate. She also said she'd stop by the frozen yogurt place for me before they came home so I don't contaminate anyone in the yogurt shop. Thanks, mom.
So I'm home now, safe from contaminating unsuspecting pregnant women and children.
Neck update - when I looked in the mirror this morning, I noticed that the area below my chin looked like it was bulging. Are my salivary glands swollen? The left side doesn't feel as bad as it did the past couple of days, but I tell you, it looks like I gained 30 pounds back just in my neck area. Maybe it's just me being a little too self conscious about it, but you tell me: How does my neck look?
Taken on July 2:
Taken on July 4:
Saturday, July 3, 2010
RAI - Day 3, hour 5
At 3pm I was still in debate as to if I should wait until tomorrow morning to take my first dose of Levoxyl since it says to take it on an empty stomach preferably first thing in the morning. But, then again the Levoxyl is what will keep my TSH level down enough to put any cancer cells to sleep. What is more important to me, starting to maintain that level where the cancer will sleep or waiting to take it as directed? I chose to start it today.
Happy to say that my first meal post low-iodine diet was SUSHI! Judy, as promised, brought some over for me around 4pm. I had a California roll and a Rainbow roll. It was a lot, so I had to pace myself as I have gotten sick eating too much sushi too fast in the past (Todai sashimi bday disaster in 2004). It was enough sushi for a late lunch and dinner! Was thinking maybe I'd do Chick-fil-A for dinner since I was having sushi for lunch, but that won't be necessary now.
As I took my first couple of bites of sushi, I started to wonder if the soy sauce was going to affect the absorption of Levoxyl in my body, but what was I going to do, not eat perfectly good sushi, that I have been craving for over two weeks now?!? No way! My energy level is a little better than it was this morning, so I guess the Levoxyl is working. Will see how things go tomorrow as I will start the day correctly with Levoxyl before breakfast. What I'm not too happy about is that I have to take it religiously at the same time every single day. Right now I am waking up between 7am and 8am, but when I go back to work, I'll be getting up around 6am. That means no sleeping in on the weekends. Or, perhaps I could just get up at the usual time on the weekends so I can take the Levoxyl, then go back to sleep. I guess I'll have to figure this one out over the next couple of weeks so that everything flows like clock work when I return to work.
My stomach is still feeling a little upset, but not enough for me to have to hurl again, I don't think. So far RAI Day 3 is going pretty well!
Happy to say that my first meal post low-iodine diet was SUSHI! Judy, as promised, brought some over for me around 4pm. I had a California roll and a Rainbow roll. It was a lot, so I had to pace myself as I have gotten sick eating too much sushi too fast in the past (Todai sashimi bday disaster in 2004). It was enough sushi for a late lunch and dinner! Was thinking maybe I'd do Chick-fil-A for dinner since I was having sushi for lunch, but that won't be necessary now.
As I took my first couple of bites of sushi, I started to wonder if the soy sauce was going to affect the absorption of Levoxyl in my body, but what was I going to do, not eat perfectly good sushi, that I have been craving for over two weeks now?!? No way! My energy level is a little better than it was this morning, so I guess the Levoxyl is working. Will see how things go tomorrow as I will start the day correctly with Levoxyl before breakfast. What I'm not too happy about is that I have to take it religiously at the same time every single day. Right now I am waking up between 7am and 8am, but when I go back to work, I'll be getting up around 6am. That means no sleeping in on the weekends. Or, perhaps I could just get up at the usual time on the weekends so I can take the Levoxyl, then go back to sleep. I guess I'll have to figure this one out over the next couple of weeks so that everything flows like clock work when I return to work.
My stomach is still feeling a little upset, but not enough for me to have to hurl again, I don't think. So far RAI Day 3 is going pretty well!
RAI - Day 2, hour 23:37
Well, I think I just threw up the cashews, so I should be Ok to take the Levoxyl at 3pm. And, a brand new Chick-fil-A just opened at the mall, so maybe that's where I should go for my lunch, provided my stomach feels up to it in an hour.
RAI - Day 2, hour 23
Just counting down the minutes now until I can eat anything I want (and start Levoxyl, for the rest of my life). My stomach is still feeling unsettled.
I woke up this morning with a little more soreness on the left side of my neck and just feeling tired. How many weekend mornings in the past have I woken up feeling too tired to do anything? Many. I guess all those weekends I must have been very hypothyroid because just like all those weekends past, I just lay there, staring at the ceiling in my bedroom thinking about whether or not I should get up or just go back to sleep. Sure this morning there were a couple of World Cup games to watch, but I just didn't feel like getting up. Hopefully the Levoxyl will fix it so I never have any more weekends (or weekday mornings) like this again.
Not sure what I want to eat first. Should I go to In-n-Out and get a combo? Do I just want McDonald's french fries? If I go anywhere it has to be drive-thru so I'm not standing next to anyone for too long. I'm so hungry, but I don't want to eat anything my mom would cook, oddly enough. Well, I have a few minutes to think about it. Well, maybe a little more than I thought because I'm supposed to take the Levoxyl on an empty stomach, but I just had some cashews, and then I'm not supposed to eat for 30 minutes to an hour after. Arrrrrgh!!!!!
I woke up this morning with a little more soreness on the left side of my neck and just feeling tired. How many weekend mornings in the past have I woken up feeling too tired to do anything? Many. I guess all those weekends I must have been very hypothyroid because just like all those weekends past, I just lay there, staring at the ceiling in my bedroom thinking about whether or not I should get up or just go back to sleep. Sure this morning there were a couple of World Cup games to watch, but I just didn't feel like getting up. Hopefully the Levoxyl will fix it so I never have any more weekends (or weekday mornings) like this again.
Not sure what I want to eat first. Should I go to In-n-Out and get a combo? Do I just want McDonald's french fries? If I go anywhere it has to be drive-thru so I'm not standing next to anyone for too long. I'm so hungry, but I don't want to eat anything my mom would cook, oddly enough. Well, I have a few minutes to think about it. Well, maybe a little more than I thought because I'm supposed to take the Levoxyl on an empty stomach, but I just had some cashews, and then I'm not supposed to eat for 30 minutes to an hour after. Arrrrrgh!!!!!
Friday, July 2, 2010
RAI - Day 2, hour 4
My throat, especially the left side, is starting to feel sore, like I'm coming down with a cold. I was sucking on sour Jolly Ranchers until I accidentally swallowed one, whole. I may give them another go later this evening, or perhaps try a fresh lemon. Rubbing my neck seems to help, temporarily. Earlier this afternoon the area around my scar was red, but I'm not rubbing that area, so not sure what is going on there.
Food. I was tired of eating at 11am this morning, so I was bound to get sick of something today. I've been eating basmati rice with stir fried veggies and portobella mushrooms for lunch and dinner since Sunday night, so I think I'm finally sick of it because the smell of said concoction is starting to make me nauseous. My mom made it for my lunch, but I didn't take a few bites until around 3pm, so it's been sitting there, covered with another paper plate, but the smell was just getting to me. I don't supposed three hours of sucking on Jolly Ranchers helped either. She gave me a ziplock baggie to put it in. I feel bad wasting food, but I think I would've puked if I didn't put it away. I have to keep all my trash, even food waste, in my room until I'm out of isolation, so I couldn't just ask for it to be taken away. So I'm having a fruit plate for dinner - mango, honey dew, strawberries, and raspberries. Only 20 more hours of this crappy low-iodine diet. Judy said she'd bring me some sushi tomorrow. What a treat that would be! Uh-oh...my stomach is starting to feel a little upset now, so that could be bad news for me.
Water intake. I think I've been doing pretty good with the water. I'm supposed to pee at least once an hour to help move the radiation out of my body. Was a little bummed that my pee wasn't glowing bright green yesterday - it would have been a good indicator of how much radiation was coming out of me each time I used the toilet. I guess the glowing radiation stuff is part of Hollywood's portrayal of radioactive substances. Oh well.
Energy level. Tired. Not exhausted, just tired. I've taken a couple of naps today, updated my blog, watched some videos from Kristin's blog, did my laundry, and did a little reading. One of my co-workers, Lottie, sent me a book to read. That was very thoughtful of her. It's called "The Shack". I started to read it, and I like it so far. Sleep sounds good right now.....
Food. I was tired of eating at 11am this morning, so I was bound to get sick of something today. I've been eating basmati rice with stir fried veggies and portobella mushrooms for lunch and dinner since Sunday night, so I think I'm finally sick of it because the smell of said concoction is starting to make me nauseous. My mom made it for my lunch, but I didn't take a few bites until around 3pm, so it's been sitting there, covered with another paper plate, but the smell was just getting to me. I don't supposed three hours of sucking on Jolly Ranchers helped either. She gave me a ziplock baggie to put it in. I feel bad wasting food, but I think I would've puked if I didn't put it away. I have to keep all my trash, even food waste, in my room until I'm out of isolation, so I couldn't just ask for it to be taken away. So I'm having a fruit plate for dinner - mango, honey dew, strawberries, and raspberries. Only 20 more hours of this crappy low-iodine diet. Judy said she'd bring me some sushi tomorrow. What a treat that would be! Uh-oh...my stomach is starting to feel a little upset now, so that could be bad news for me.
Water intake. I think I've been doing pretty good with the water. I'm supposed to pee at least once an hour to help move the radiation out of my body. Was a little bummed that my pee wasn't glowing bright green yesterday - it would have been a good indicator of how much radiation was coming out of me each time I used the toilet. I guess the glowing radiation stuff is part of Hollywood's portrayal of radioactive substances. Oh well.
Energy level. Tired. Not exhausted, just tired. I've taken a couple of naps today, updated my blog, watched some videos from Kristin's blog, did my laundry, and did a little reading. One of my co-workers, Lottie, sent me a book to read. That was very thoughtful of her. It's called "The Shack". I started to read it, and I like it so far. Sleep sounds good right now.....
RAI - Day 1, hour 20
I've been feeling a little pain along the left side of my jaw/neck area and a weird taste coming from the left side of my mouth every now and then, so I wonder, could my left salivary gland be drying up from the radiation? I didn't start drinking water until 11pm because I fell a sleep. When I got up, I didn't want to drink too much water because I didn't want to be getting up every hour to pee when I should be sleeping, and Frankie might think I could take him out, which I can't do.
At the ThyCa meeting, some of them had mentioned rubbing the area to help relieve the pain and to possibly help move things along in the salivary glands that were blocked up. So, I've been drinking more water since I got up this morning, and rubbing both sides of my neck (don't need both sides to get blocked and dry up!).
Otherwise, I'm still feeling a little tired right now. I'll do my laundry when my parents leave for my dad's Coumadin class this afternoon. Not allowed out of my room right now since the physical therapist is here working with my dad.
At the ThyCa meeting, some of them had mentioned rubbing the area to help relieve the pain and to possibly help move things along in the salivary glands that were blocked up. So, I've been drinking more water since I got up this morning, and rubbing both sides of my neck (don't need both sides to get blocked and dry up!).
Otherwise, I'm still feeling a little tired right now. I'll do my laundry when my parents leave for my dad's Coumadin class this afternoon. Not allowed out of my room right now since the physical therapist is here working with my dad.
Thursday, July 1, 2010
RAI therapy dosage
After my Radiologist explained everything to me, I signed a few forms, then was taken to a tiny room down the hall, where the I-131 pills are kept. He confirmed the dosage amount, 148.6 mCi. I had to put on latex gloves, so no residual iodine would be left on my hands. I took a sip of water to help dissolve the pills, then I was given two dark aquamarine colored pills to swallow. Not the most perfectly shaped pills, but they were a pretty color. My gloves were removed, and I was taken around the corner (less people to expose) so they could confirm, with a hand monitor, that the pills had traveled to my stomach.
I was taken back to the first room to sign a few more papers. She asked if I had any other questions. This is when I realized I should have been taking notes when he was going over the water/hydration v. lemon or hard candy issue because I couldn't remember which I was supposed to do and when, so I needed clarification.
Other than that, I go back on Tuesday, July 6 for my first whole body scan (WBS) which will take two hours, then again on July 12 for my second WBS, which she said would take a little less time.
So far I am feeling Ok. I was tired right after I took the dosage, but that's probably due to me being severely hypothyroid and not sleeping more than 4 hours last night (who could possibly sleep well the night before RAI?!?). I didn't throw up my food, another good sign. And, I'm not yet going stir crazy in my 10x10 cell. All good news!
I was taken back to the first room to sign a few more papers. She asked if I had any other questions. This is when I realized I should have been taking notes when he was going over the water/hydration v. lemon or hard candy issue because I couldn't remember which I was supposed to do and when, so I needed clarification.
Other than that, I go back on Tuesday, July 6 for my first whole body scan (WBS) which will take two hours, then again on July 12 for my second WBS, which she said would take a little less time.
So far I am feeling Ok. I was tired right after I took the dosage, but that's probably due to me being severely hypothyroid and not sleeping more than 4 hours last night (who could possibly sleep well the night before RAI?!?). I didn't throw up my food, another good sign. And, I'm not yet going stir crazy in my 10x10 cell. All good news!
RAI, here I come
Driving to my RAI appt was the first time I've cried about my situation in a few weeks. Started when I gave hugs to my parents and gave Frankie a pat on the head on my way out the door. Three miles away from my house I was crying and driving, which seems to be just as dangerous as texting while driving as I almost plowed into a semi truck while trying to wipe the tears from my eyes. I know, this is just part of my thyroid cancer treatment, but it doesn't make it easier knowing I will pretty much be in isolation for a least week. The Radiologist will be giving me additional info, such as how much longer I may have to stay on the low-iodine diet and other restrictions I may have to follow while in isolation. Wow - I was just told that my dosage is at 1:30pm, not 12pm. Well, they told me not to eat after 8am, so I assumed my dosage was at 12pm. Will see what happens.
Was able to run a few errands on the way home. As I drove down the street, got a call from Radiology. She said my pregnancy test came back negative (of course), so she was going to go ahead and make my dosage pill for 150 mCi. Then she went over the precautions I need to take to prevent exposure to others, to write down any additional questions I have for the Radiologist, then told me to be back at the hospital at 1:4pm for my therapy dosage.
I had to wait a few minutes for the Radiologist to arrive. It was cold in that room. He explained why I am having the procedure, and told me a few new things about HCC and the therapy that I didn't know:
1. Sometimes HCC doesn't produce Thyroglobulin, the tumor marker
2. If a good thyroid cell is next to a thyroid cancer cell, the radiation kills the cancer cell because it is next to the good cell that was killed by the isotope. I can't remember the exact term he used, but that is the theory. It's not a guarantee, but it usually happens that way.
3. If I get pregnant within the year after RAI, I have a higher chance of miscarriage, but if a baby is carried to full term, the radiation will not have a negative affect on the baby
4. I may start menopause a year earlier.
5. The radiation will stay in my body for a few more months, so I can set off alarms at the airport and boarder crossings. I have to carry a card with me with my therapy info so the authorities can call to confirm why I set off the radiation alarms.
6. Any tears I shed during my treatment will be radioactive. As such, the tear ducts may be affected and close up. If later I notice that my tears run over my lower lids instead of the inner corner of my eye, my opthamalogist can dilate my tear ducts to re-open them.
7. I may experience pain in my cheeks and jaw area (salivary glands affected), or in my neck. In any of these cases, I have to contact my ENDO.
8. I will have a little higher risk of developing leukemia from RAI
9. It takes 90 minutes for the radiation to be absorbed in my body
As for the precautions for reducing external exposure to others, his info seemed even less restrictive than everything I've read online and in books:
1. Put all my bed linens and under garments in a bag and wash at the end of the week (not every day)
2. Not necessary to throw out my toothbrush after isolation
3. Ok to throw out my disposable utensils/plates/cups with the trash next week
4. Didn't mention anything about having to shower each day or launder my clothes and bed linens each day
5. I cannot share the same toilet with anyone for a week. Shower and sink are Ok, not necessary to rinse after each use, but the toilet is most important because the primary way the radiation is excreted from my body is through my urine. So, the more I pee, the faster it will leave my body. And of course, flush twice each time.
6. Driving - Ok to drive myself. I should wipe the steering wheel with a moist wipe after so I don't leave any residual radiation on it.
He did stress that under no circumstances am I to prepare food for anyone (or pets, I assume). I asked if I could attend a 4th of July picnic and parade, which is over 48 hours after my therapy dose. He said I could attend, but not to spend more than 5 mins with each person; if it is longer, then stay at least three feet away from that person, and make sure I am drinking a lot of water (porta-potties are Ok to use). Pet exposure - he said the dogs would be fine due to their ages (12 and 13), but the cat would probably be better off being boarded. I think just to be safe I'm going to have the dogs boarded next weekend anyway when my parents are out of town - better to be safe than sorry.
Other instructions:
1. Do not eat or drink anything for two hours after the dosage - best way to make sure I don't vomit. If I do vomit within 12 hours after the dosage, call the Radiology dept so they can come to my house to clean it up.
2. After four hours, start drinking a lot of fluids; I should be peeing at least once an hour, and it should be clear or have very little color to it.
3. After 24 hours start sucking on lemons or hard candies to activate the salivary glands. Fresh lemons is best, just make sure I rinse with water since lemon juice is highly acidic. These two (#2 and #3) are the fuzzy ones for me. I thought this was the instruction, but the tech said she thought it didn't make sense, and it was the other way around (lemons after 4 hours, water after 24hrs). My Radiologist was already gone, so a different one had to clarify.
That's about it. It's getting close to 5pm, when I can eat and drink something. I haven't eaten since 7:58am, so I'm ready for food. My Radiologist was good at explaining things, but I am glad he took the time to do so and to answer my questions as well. I felt more at ease about the therapy as he talked to me about it. And thank goodness his external exposure guidelines are not as bad as what everyone else was telling me. I will still shower daily, launder my lines, clothes etc. each day, and rinse the tub and sink after I use them, just to be on the safe side. Last thing I need to do is unknowingly expose either one of my parents or our pets. So glad I'm not stuck at home for 4th of July, but I think I still have an excuse to show up, get food, then go home - I'd rather not have to use a porta-pottie. I may even swing by the froyo place to get my own frozen yogurt, to go!
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