After the conference on Saturday, I met Nick and Jerry, and some of their friends for dinner. It was good to catch up with the guys, and meet a new friend. It was like the walking wounded at our dinner table. One of the guys is also a cancer patient, and had chemo last week. Another had knee surgery last week (meniscal tear). And another had his gallbladder taken out. It seems Nick and Jerry brought bad health with them down from San Francisco.
After dinner, we went back to the place that Nick and Jerry are house-sitting. I had met the owners a couple of years ago, when they were renovating their home. Since then Nick has updated me on the remodel. One thing he thought I'd get a kick out of was the two $2200 toilets that have heated seats and automatic cleaning and drying (of the user, not the toilet itself). So of course after getting the grand tour, I had to use one of these special toilets. The heated seat was very comfy, although I think the nozzle for front cleaning needs to be adjusted because it actually hit me in the rear. LOL, can't believe I just wrote that.
I should have taken a picture of it, but apparently there are some YouTube videos of said toilet. So, if you want to see what all the fuss is about this toilet, just Google "Toto Neo washlet toilet".
Monday, February 28, 2011
Saturday, February 26, 2011
Tuesday, February 22, 2011
Last week in review - Feb 14-20, 2011
Time sure flies even when you are not having fun. Were there even highlights? I guess so.
First of all, I'm glad that as many of us that could go did go to support my aunt and her family in this time of sadness. I wasn't as close to Yvette as my younger cousins that were closer in age to her, but it was still hard to see one of us go so early. We all realized that the only time we get together now is for weddings and funerals. Regardless, it was nice to catch up with my cousins and give my aunt and her family diversions.
A few things I thought were neat about the funeral: We drove by their house on the way to the church and they placed a single red rose on their door. The pall bearers were all from the funeral home, and they carried her coffin out of the church on their shoulders. The guys running the show kinda reminded me of....mobsters. I think it was their accents, and their long dark colored winter coats. But, they were good at what they did.
We got some camera time in. Originally, we had planned on getting pictures of the sunrise looking over Brooklyn, I think from the South Street Pier area. However, we got up a bit late, but still managed to get nice shots of the sun breaking through the clouds from the State Island Ferry.
We didn't quite make it to the South Street pier. Instead, we stumbled upon the Vietnam Veterans Memorial Plaza, then got side tracked by the colder-than-I-could-tolerate temperatures (Viv and LM had leggings or extra pants on to my pair of jeans) and the need for coffee.
Outside the Starbucks we had found warmth and lattes in was the famous "Wafels & Dinges" truck. We decided that when we were ready to brave the cold again, we would try some of their 'wafels'. I tried 'de bacon+syrup wafel' (Scandalous and pretty much illegal in Belgium. Awesome in NYC), which was really good. If it wasn't so cold out, I probably would have also tried the 'WMD' (Wafel of Massive Deliciousness) with bananas, strawberries, dulce de leche, spekuloos spread, and whipped cream.
The gang had dinner at an Italian restaurant which I think was called Briostos. The sparkling water came in a bottle that said "Source Mountain of God". As Danielle put it, 'great marketing'. The food was pretty good. It was a nice way to spend the last evening together (well, the rest of us, except Karen, were going home the next day).
On the second leg of my flight home, I ended up sitting with one of the more interesting 'single serving' friends I have met on a flight. A shout out to Ontario from Baton Rouge.
Got to climb with Serena and her mom. I managed to get two new bruises, one on each knee. Since my climbing shoes have started to smell like....athletic shoes, I asked her what she does to keep them smelling....nicer. She uses a spray and something that has cedar chips in it. I had done some research about it the night before and found a forum where one of the responses was "It just amazes me that this topic comes up so often. Put your feet in your shoes, not your nose." Well, Ok then. Anyway, my right arm is sore, but not sure if that was from climbing or from sleeping on it weird.
So, the addition of T3 (Cytomel)...not sure if it is working already or not. I did have a headache yesterday, similar to the ones I was getting after my second surgery, when I was on T3 only. The side affects include headaches, moodiness,.....sounds like more PMS symptoms.....great. My left eye is starting to tear on its own again.....great.
First of all, I'm glad that as many of us that could go did go to support my aunt and her family in this time of sadness. I wasn't as close to Yvette as my younger cousins that were closer in age to her, but it was still hard to see one of us go so early. We all realized that the only time we get together now is for weddings and funerals. Regardless, it was nice to catch up with my cousins and give my aunt and her family diversions.
A few things I thought were neat about the funeral: We drove by their house on the way to the church and they placed a single red rose on their door. The pall bearers were all from the funeral home, and they carried her coffin out of the church on their shoulders. The guys running the show kinda reminded me of....mobsters. I think it was their accents, and their long dark colored winter coats. But, they were good at what they did.We got some camera time in. Originally, we had planned on getting pictures of the sunrise looking over Brooklyn, I think from the South Street Pier area. However, we got up a bit late, but still managed to get nice shots of the sun breaking through the clouds from the State Island Ferry.
We didn't quite make it to the South Street pier. Instead, we stumbled upon the Vietnam Veterans Memorial Plaza, then got side tracked by the colder-than-I-could-tolerate temperatures (Viv and LM had leggings or extra pants on to my pair of jeans) and the need for coffee. 
Outside the Starbucks we had found warmth and lattes in was the famous "Wafels & Dinges" truck. We decided that when we were ready to brave the cold again, we would try some of their 'wafels'. I tried 'de bacon+syrup wafel' (Scandalous and pretty much illegal in Belgium. Awesome in NYC), which was really good. If it wasn't so cold out, I probably would have also tried the 'WMD' (Wafel of Massive Deliciousness) with bananas, strawberries, dulce de leche, spekuloos spread, and whipped cream.
The gang had dinner at an Italian restaurant which I think was called Briostos. The sparkling water came in a bottle that said "Source Mountain of God". As Danielle put it, 'great marketing'. The food was pretty good. It was a nice way to spend the last evening together (well, the rest of us, except Karen, were going home the next day).
On the second leg of my flight home, I ended up sitting with one of the more interesting 'single serving' friends I have met on a flight. A shout out to Ontario from Baton Rouge.
Got to climb with Serena and her mom. I managed to get two new bruises, one on each knee. Since my climbing shoes have started to smell like....athletic shoes, I asked her what she does to keep them smelling....nicer. She uses a spray and something that has cedar chips in it. I had done some research about it the night before and found a forum where one of the responses was "It just amazes me that this topic comes up so often. Put your feet in your shoes, not your nose." Well, Ok then. Anyway, my right arm is sore, but not sure if that was from climbing or from sleeping on it weird.
So, the addition of T3 (Cytomel)...not sure if it is working already or not. I did have a headache yesterday, similar to the ones I was getting after my second surgery, when I was on T3 only. The side affects include headaches, moodiness,.....sounds like more PMS symptoms.....great. My left eye is starting to tear on its own again.....great.
Wednesday, February 16, 2011
How does my neck look? 2/16/11
It has been really cold here in New York these past couple of days. I have been feeling pretty good, considering the lack of sleep that goes along with family gatherings, regardless of the nature of the get together.
When I was selecting the photo for this neck update, I noticed how much more red my scar is and that I have something that looks like a pimple above my scar. Odd, because I've had a scarf wrapped around my neck for 80% of this trip, so it has been well protected from the east coast elements. No weird tingly feeling along my scar, but earlier this evening, it was itchy, so I was actually scratching at it!
Oddly enough, I got a 'reminder call' about my second opinion ENDO appt yesterday. Right, the appt I had made for March 17, was some how scheduled for February 17. I rescheduled it for March 3. Still have to get my medical records forwarded to ENDO #2.
My neck has gotten a lot of exposure on this trip - it didn't have to go through the x-ray machine at the airport (Yay!), but it got to meet half of my first cousins on my dad's side of the family, it got to experience colder than normal temps (for a warm-weather-neck), and it even got to see the Statue of Liberty (well, from the Staten Island Ferry).
Quite an adventure for my neck, especially since 364 days ago, the only worry it had in the world was the ENDO appt that ended up changing everything for it. Yes, that appt was on Feb 17, 2010. My neck has been through a lot this past year, but it has made it through everything nevertheless. It's in the clear, at least until June and July. So, tell me, how does my neck look?
When I was selecting the photo for this neck update, I noticed how much more red my scar is and that I have something that looks like a pimple above my scar. Odd, because I've had a scarf wrapped around my neck for 80% of this trip, so it has been well protected from the east coast elements. No weird tingly feeling along my scar, but earlier this evening, it was itchy, so I was actually scratching at it!
Oddly enough, I got a 'reminder call' about my second opinion ENDO appt yesterday. Right, the appt I had made for March 17, was some how scheduled for February 17. I rescheduled it for March 3. Still have to get my medical records forwarded to ENDO #2.
My neck has gotten a lot of exposure on this trip - it didn't have to go through the x-ray machine at the airport (Yay!), but it got to meet half of my first cousins on my dad's side of the family, it got to experience colder than normal temps (for a warm-weather-neck), and it even got to see the Statue of Liberty (well, from the Staten Island Ferry).
Quite an adventure for my neck, especially since 364 days ago, the only worry it had in the world was the ENDO appt that ended up changing everything for it. Yes, that appt was on Feb 17, 2010. My neck has been through a lot this past year, but it has made it through everything nevertheless. It's in the clear, at least until June and July. So, tell me, how does my neck look?
Monday, February 14, 2011
Sunday, February 13, 2011
Friday, February 11, 2011
How does my neck look? 2/11/11
ENDO says - part 7
I had an ENDO appt this morning, so he could answer some of my questions.
My first question was about my mystery tissue: My ENT and ENDO both agree to wait and see what my mystery tissue does. If it is scar tissue, it could go away or it could still be healing from the two surgeries. If it is thyroid tissue, the RAI therapy could still be working. So, as much as I would prefer to find out what it is now, both of my docs don't want to jump into anything too quickly and give me any unnecessary procedures. As my ENDO put it he, he didn't want to 'radiate or surgerate' it. Are those even real words?!? So the plan is to keep an eye on it. He ordered another ultrasound in six months, so my next follow up ultrasound is in July, plus a follow up appt.
The one year WBS ('from head to toe'), will be done with Thyrogen (two shots on consecutive days) so I don't have to go off my meds. He wants a stimulated Tg reading, so the day I get my 5 mCi pill, I also need to have my blood drawn. I think the WBS follows the next day. He said there shouldn't be as many restrictions, for isolation, as there were with my ablation therapy dose last year, but I should check with the Nuc Med dept. Cool. He also said we could schedule my WBS around my life, so I asked if it could be in June instead of May.
My super suppressed TSH: He said that my thyroid levels are the inverse of my TSH level, so a very low TSH means very high thyroid levels. Still not really sure what he means by thyroid levels - is this the amount of T4 and T3 in my blood? He said most patients feel better when they are very suppressed and it is good to be there at least for the first year. But I said shouldn't it be more in the .5 to .1 range? He said he would be fine with that.
The results from my blood draw on Monday: TSH = .01, FT4 = 1.7
So my FT4 is still above range, lower than last December, but still .2 above the top of the range. Any ideas why I my FT4 isn't going down? No.
My thyroid brain fog: He said it is a good idea to add Cytomel (T3), to my Levoxyl (T4) dosage. He said T3 is very potent, so he would decrease my T4 down to 88mcg, from 125mcg, and add 12.5mcg of T3, which is half of what I was taking post completion thyroidectomy. Did he say half of a 25mcg pill twice a day, or just half a pill each day?!? We may have to tweak it a bit, so he only prescribed a 30-day supply. My next blood draw, to see how my levels are with the new prescription, is in two months, so in April, the week before my next ENDO appt. I now remember that the 25mcg dose after my second surgery did give me headaches, and if I have to take two doses each day, I wonder how it will affect my eating schedule. Will have to wait and see what my prescription says.
My misc. test results: He referred to the latest ultrasound, from last month. He said sometimes the ultrasounds pick up lymph nodes, other things in the thyroid bed. There were more identified this time around, but they were all unremarkable. He said not to worry about it. Well, I had originally asked about something I saw on my RAI/WBS (lymphadenopathy) and on the first ultrasound (two lymph nodes on the left, one on the right side of my neck) results, but I guess this is Ok, especially since nothing was identified as being 'not benign'.
Overall, I felt better with his answers to my questions. Was not sure what he'd say about adding Cytomel for my brain fog, so I'm glad he's adding it to my meds. I can live with the 'wait and see' approach on my mystery tissue, unless my second opinion ENDO has a different opinion. And, I at least know for sure that I don't have anything to worry about for the next couple of months. Yay!
My first question was about my mystery tissue: My ENT and ENDO both agree to wait and see what my mystery tissue does. If it is scar tissue, it could go away or it could still be healing from the two surgeries. If it is thyroid tissue, the RAI therapy could still be working. So, as much as I would prefer to find out what it is now, both of my docs don't want to jump into anything too quickly and give me any unnecessary procedures. As my ENDO put it he, he didn't want to 'radiate or surgerate' it. Are those even real words?!? So the plan is to keep an eye on it. He ordered another ultrasound in six months, so my next follow up ultrasound is in July, plus a follow up appt.
The one year WBS ('from head to toe'), will be done with Thyrogen (two shots on consecutive days) so I don't have to go off my meds. He wants a stimulated Tg reading, so the day I get my 5 mCi pill, I also need to have my blood drawn. I think the WBS follows the next day. He said there shouldn't be as many restrictions, for isolation, as there were with my ablation therapy dose last year, but I should check with the Nuc Med dept. Cool. He also said we could schedule my WBS around my life, so I asked if it could be in June instead of May.
My super suppressed TSH: He said that my thyroid levels are the inverse of my TSH level, so a very low TSH means very high thyroid levels. Still not really sure what he means by thyroid levels - is this the amount of T4 and T3 in my blood? He said most patients feel better when they are very suppressed and it is good to be there at least for the first year. But I said shouldn't it be more in the .5 to .1 range? He said he would be fine with that.
The results from my blood draw on Monday: TSH = .01, FT4 = 1.7
So my FT4 is still above range, lower than last December, but still .2 above the top of the range. Any ideas why I my FT4 isn't going down? No.
My thyroid brain fog: He said it is a good idea to add Cytomel (T3), to my Levoxyl (T4) dosage. He said T3 is very potent, so he would decrease my T4 down to 88mcg, from 125mcg, and add 12.5mcg of T3, which is half of what I was taking post completion thyroidectomy. Did he say half of a 25mcg pill twice a day, or just half a pill each day?!? We may have to tweak it a bit, so he only prescribed a 30-day supply. My next blood draw, to see how my levels are with the new prescription, is in two months, so in April, the week before my next ENDO appt. I now remember that the 25mcg dose after my second surgery did give me headaches, and if I have to take two doses each day, I wonder how it will affect my eating schedule. Will have to wait and see what my prescription says.
My misc. test results: He referred to the latest ultrasound, from last month. He said sometimes the ultrasounds pick up lymph nodes, other things in the thyroid bed. There were more identified this time around, but they were all unremarkable. He said not to worry about it. Well, I had originally asked about something I saw on my RAI/WBS (lymphadenopathy) and on the first ultrasound (two lymph nodes on the left, one on the right side of my neck) results, but I guess this is Ok, especially since nothing was identified as being 'not benign'.
Overall, I felt better with his answers to my questions. Was not sure what he'd say about adding Cytomel for my brain fog, so I'm glad he's adding it to my meds. I can live with the 'wait and see' approach on my mystery tissue, unless my second opinion ENDO has a different opinion. And, I at least know for sure that I don't have anything to worry about for the next couple of months. Yay!
Monday, February 7, 2011
Whirlwind weeks
This week and next are sure to be crazy/busy for me. This has been my mind since 4pm this afternoon:
I'm tired just thinking about the two weeks that are ahead of me. In the middle of it all, I have my ENDO appt on Friday - I've got a few questions for him which I hope he can clarify for me, and hopefully he'll be able to tell me what the plan is for my unidentifiable tissue, and tell me if my meds still need to be tweaked. To round it out, I hope it is not cold/snowing/miserable weather in New York next week - that would not be the best way to send someone off into the afterlife.
Call the vet to see if I can board the pets there this weekend, check. Call ENDO's office to make sure order for my blood work was submitted so I can get it done this afternoon, check. ENDO's receptionist says he has an open appt Friday morning, Feb 11 - not good, because I could be on a plane to the east coast at the time, but told her I'd call her back to see if it was still open if I don't have to travel Friday morning.
On the way to blood draw, mom calls with the funeral details - next Wednesday, Feb 16th, not this weekend. Relieved - I now have breathing room after two days in the MP office on Wed/Thu, and maybe I can still get that appt on Friday with ENDO.
Got the Friday appt, yay. Still in transit to get blood drawn, call sister to start figuring out what day they should leave. She says mom forgot about dad's appt that could be on Wed next week....Ok, tail spin time. Blood draw. Home. Dad's appt is this Thu, not next Mon/Tue/Wed, good to go. Note - two hotels within 5 mins of cousins' house. Note - if I go, I'd have to leave Monday night so I could get a day of work in - I'm supposed to be designing a new database! - but I can come back with them on Thursday.
Check work email. Boss says Fri/Mon off is Ok. But now funeral is next Wed, what to do.....make travel arrangements for my parents/sister. Check work calendar and notice dad has another appt (let's just say it has to do with the 'exit area of his body') set for Wed the day of the funeral. Mom will reschedule. Call brother-in-law & sister to coordinate flights for her and mom/dad. Flights coordinated for coinciding arrival/departure times, car rental, hotel, check, check, check. Book my flights, check. Email boss with appt and flight info, check. Anything else?, check.....
I'm tired just thinking about the two weeks that are ahead of me. In the middle of it all, I have my ENDO appt on Friday - I've got a few questions for him which I hope he can clarify for me, and hopefully he'll be able to tell me what the plan is for my unidentifiable tissue, and tell me if my meds still need to be tweaked. To round it out, I hope it is not cold/snowing/miserable weather in New York next week - that would not be the best way to send someone off into the afterlife.
Saturday, February 5, 2011
How does my neck look? 2/5/11
I am happy to report that I have not had that weird tingly feeling along the my scar in a couple of days. But I have started to pay more attention to what my neck feels like. That is, every time I cleanse and moisturize my face (two, sometimes three times a day), I feel both sides of my neck, just to make sure nothing feels odd in that area. For the longest time after my surgery I was afraid to touch my neck because the scar/scab looked freaky and it was just numb for a long time. Now that I have that unidentifiable tissue on the right side somewhere (yes, I don't even know the exact location of the scar or thyroid tissue, all I know is it is on the right side of my neck), I decided I need to make sure nothing feels abnormal, on either side. So far, everything feels normal. It has been looking a bit red though. Not sure if that is from the cold weather, or maybe if that is the color that my scar will always be.
Anyway, how does my neck look?
My cousin, Yvette
We just got a call from my cousin, Lenny. She's in the Philippines on a Medical Mission with her family. Her younger sister, Yvette, passed away Sunday morning (Saturday here in the US). Respiratory failure.
I can't remember how old she is because since she is a younger cousin, I always tend to think they are still 5 or 6, or whatever age they were when I first met them. She was in her 30's. I remember fun times with her though. She was a cute little kid, spunky. As a baby, she had undergone two surgeries for a congenital heart problem - I remember seeing the scar on her chest when they came to visit us here in San Diego, that was the first time I met Yvette and Lenny. She was probably 5 at the time. I remember wondering how a baby can go through heart surgery - so small, so fragile, such a big scar for someone so young, did it hurt?
Last time we were in New York for a family reunion in 2007, she spent the day with us, bringing us around Manhattan, in the rain. It was my birthday weekend as well, and we all went to see the Lion King. The other night I uploaded some photos from that trip to my Flickr account, and she was in several of those photos. I have not seen her since that trip, but I have my fond memories from that trip and of Yvette.
I can't remember how old she is because since she is a younger cousin, I always tend to think they are still 5 or 6, or whatever age they were when I first met them. She was in her 30's. I remember fun times with her though. She was a cute little kid, spunky. As a baby, she had undergone two surgeries for a congenital heart problem - I remember seeing the scar on her chest when they came to visit us here in San Diego, that was the first time I met Yvette and Lenny. She was probably 5 at the time. I remember wondering how a baby can go through heart surgery - so small, so fragile, such a big scar for someone so young, did it hurt?
Last time we were in New York for a family reunion in 2007, she spent the day with us, bringing us around Manhattan, in the rain. It was my birthday weekend as well, and we all went to see the Lion King. The other night I uploaded some photos from that trip to my Flickr account, and she was in several of those photos. I have not seen her since that trip, but I have my fond memories from that trip and of Yvette.
Friday, February 4, 2011
Tuesday, February 1, 2011
ThyCa group meeting - Feb 1, 2011
Small group this evening, but still a very lively discussion. I shared a little about my current issues - my ultrasound results, my FT4 being too high (because I take my meds before my blood draws), my watery left eye, and my discoveries on my medical records. We covered all four, and the meeting wasn't dominated by my issues - amazing. We all got to share, which is nice in the smaller groups.
One person was taken off this new T4 med called Tirosant, while another was put on it. It is a gel or liquid form of T4, with nothing added to it. One of our members is on Armour, which is T4 from pigs - it is natural, and it works for some, but most ENDOs will not prescribe it since they do not know enough about it, and/or they were told it wasn't as good as the chemical forms of T4 when they were in med school. The rest are either on Levoxyl or Synthroid.
No matter what form of T4 we take, a recurrent issue is that some ENDOs go by our TSH and FT4 levels, and never take into account how we are feeling. Worse yet is when our ENDOs tell us something, or manage our care with guidelines that are either out-dated or are for non-ThyCa patients. We really need ENDOs and ENTs that specialize in thyroid cancer in San Diego. I have heard about an ENDO somewhere here in the US that is a ThyCa patient, so I can only imagine that this ENDO is giving his or her patients the best possible care because s/he knows exactly what we are going through. When is San Diego ever going to get one of these?!? We need one!, no, we need a few!
One person was taken off this new T4 med called Tirosant, while another was put on it. It is a gel or liquid form of T4, with nothing added to it. One of our members is on Armour, which is T4 from pigs - it is natural, and it works for some, but most ENDOs will not prescribe it since they do not know enough about it, and/or they were told it wasn't as good as the chemical forms of T4 when they were in med school. The rest are either on Levoxyl or Synthroid.
No matter what form of T4 we take, a recurrent issue is that some ENDOs go by our TSH and FT4 levels, and never take into account how we are feeling. Worse yet is when our ENDOs tell us something, or manage our care with guidelines that are either out-dated or are for non-ThyCa patients. We really need ENDOs and ENTs that specialize in thyroid cancer in San Diego. I have heard about an ENDO somewhere here in the US that is a ThyCa patient, so I can only imagine that this ENDO is giving his or her patients the best possible care because s/he knows exactly what we are going through. When is San Diego ever going to get one of these?!? We need one!, no, we need a few!
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