Avraham Chiam is cute after his hair cut and behaved wonderfully during it. There was more than plenty of food. I didn't forget anything (except to take enough pictures). They got to the Bostoner Rebbe for the first snip. Friends and relatives came. The neighbor kids were there, waiting and ready to help get everything to the party. They would have brought over twice as much stuff if we had had it, and we had plenty!
http://picasaweb.google.com/Liba613/Upshern?authkey=Gv1sRgCOXH6-mMh8Hn2gE#slideshow/5352618756269734194
My last set of labs came back relatively okay.
I am exhausted.
Absolutely bone tired.
I took a nap this morning.
I need another nap.
My mother is IY"H arriving tomorrow morning. The house is presentable, but it would be nice to have it perfect. I don't think I am polishing silver or cleaning the attic with the kids before she gets here. I am just too tired.
The party was worth it, yesterday's appointments had to happen, but today I am done. The adreniline is gone and I pushed myself well past my limit. I really hope I am feeling better tomorrow.
Tuesday, June 30, 2009
Sunday, June 28, 2009
The frosting just won't work.
First batch made a nice marshmallow sauce, not frosting thick, great for ice cream sundaes. The second batch whipped up great, was perfect except it was more than really fit into the Kitchenaid bowl (I shouldn't have doubled it) and now it is separating. I predict that by morning the frosting on the cup cakes for AC's preschool party will be melted and nothing but a clear sticky mess will remain.
This boiled frosting thing is not working.
Tomorrow I will have to go back to the good old Betty Crocker White Mountain Frosting recipe, even if it calls for more corn syrup and less cane sugar.
This boiled frosting thing is not working.
Tomorrow I will have to go back to the good old Betty Crocker White Mountain Frosting recipe, even if it calls for more corn syrup and less cane sugar.
Friday, June 26, 2009
Cooking, cleaning and pushing my limits.
Avraham Chiam's party is Sunday. I haven't asked for as much help as I should have. B"H some people offered and I accepted. My BIL is coming early to help cook and prepare vegis, there are at least three cakes being made, but that isn't really enough so I am going to have to bake as well. I also have to make the cake for AC's school for Sunday morning.
Today I bought paper goods, cooked for Shabbos, without any help from neighbors or friends for the first time since surgery, and did a lot of cleaning. The kids are set on decorating cupcakes, so I need to make cupcakes and frosting. Motzie Shabbos I have to make cream cheese and more cakes.
I already made four 9x13" kuggels and a friend is making four lasagnas. Zlata Tova did a lot of the shopping. I wonder if we should buy burrekas or if we will have enough food.
I am so glad I have some energy. I just hope I have enough. I am trying to do more than I am sure I can. I hope it works out.
Today I bought paper goods, cooked for Shabbos, without any help from neighbors or friends for the first time since surgery, and did a lot of cleaning. The kids are set on decorating cupcakes, so I need to make cupcakes and frosting. Motzie Shabbos I have to make cream cheese and more cakes.
I already made four 9x13" kuggels and a friend is making four lasagnas. Zlata Tova did a lot of the shopping. I wonder if we should buy burrekas or if we will have enough food.
I am so glad I have some energy. I just hope I have enough. I am trying to do more than I am sure I can. I hope it works out.
Thursday, June 25, 2009
Busy day.
We spent the morning at the hospital with Avraham Chaim. PDZ needed my help getting everyone up and out so there was no way to do my blood work and get there on time so I didn't. It is actually rather freeing to have no labs from Tuesday to Sunday. I hope it isn't also rather stupid. Last time I decided all was well and skipped labs I was wrong. I am feeling relatively okay though.
:)
I saw the naturopath today to figure out what I should be eating. She says that cauliflower and cabbage are goiterogenic and to avoid them. I will miss my cauliflower. It was such a good low phosphorus, low iodine food. On the other hand sweet potatoes are pretty low in phosphorus and salad is good. Eggs aren't terrible, though they aren't low iodine, but in very limited quantities. Salad with cut up hard boiled eggs is sounding promising. I just have to figure out how to eat it without the kids "helping" too much. That is the problem with making special meals.
She had other ideas as well, and printed me some lists and information.
I hope to have it figured out and food frozen for when I am hypothyroid soon! I hope my mother is up for helping in the house and kitchen instead of so much traveling this year. This year is about seeing the family, visiting and hanging out IMO, not big trips. A couple trips to the next town over's pool may be on my agenda and a trip to the zoo if all is well, but other trips I think she needs to figure out how to go on her own.
She is scheduled to arrive Wendesday morning.
Zlata Tova did the grocery shopping. She did a pretty good job. I have to figure out what else we need for Avraham Chaim's upshern Sunday and buy papergoods tomorrow on top of making Shabbos on my own for the first time since before surgery. I think I took on a bit too much, but where there is a will, there is a way and Shabbos is coming so I will get some rest in the end IY"H.
:)
I saw the naturopath today to figure out what I should be eating. She says that cauliflower and cabbage are goiterogenic and to avoid them. I will miss my cauliflower. It was such a good low phosphorus, low iodine food. On the other hand sweet potatoes are pretty low in phosphorus and salad is good. Eggs aren't terrible, though they aren't low iodine, but in very limited quantities. Salad with cut up hard boiled eggs is sounding promising. I just have to figure out how to eat it without the kids "helping" too much. That is the problem with making special meals.
She had other ideas as well, and printed me some lists and information.
I hope to have it figured out and food frozen for when I am hypothyroid soon! I hope my mother is up for helping in the house and kitchen instead of so much traveling this year. This year is about seeing the family, visiting and hanging out IMO, not big trips. A couple trips to the next town over's pool may be on my agenda and a trip to the zoo if all is well, but other trips I think she needs to figure out how to go on her own.
She is scheduled to arrive Wendesday morning.
Zlata Tova did the grocery shopping. She did a pretty good job. I have to figure out what else we need for Avraham Chaim's upshern Sunday and buy papergoods tomorrow on top of making Shabbos on my own for the first time since before surgery. I think I took on a bit too much, but where there is a will, there is a way and Shabbos is coming so I will get some rest in the end IY"H.
Wednesday, June 24, 2009
Good news!!
My TSH is 1.89!!
Goal is a lot lower to suppress cancer growth, but 1.89 is quite normal, which makes sense considering I have had times when I feel almost normal, though still exhausted. I am not as emotionally out of wack and my thinking is clear again.
Hopefully this means I have three weeks of clear thinking available before I go off my thyroid medication again for the RAI.
Goal is a lot lower to suppress cancer growth, but 1.89 is quite normal, which makes sense considering I have had times when I feel almost normal, though still exhausted. I am not as emotionally out of wack and my thinking is clear again.
Hopefully this means I have three weeks of clear thinking available before I go off my thyroid medication again for the RAI.
Tuesday, June 23, 2009
Numb, tired and turning in early.
Labs didn't look too bad today but I feel yucky.
My blood pressure is totally unstable.
90/60 this am when I went for blood work
120/100 and 135/95 this afternoon before PT
both checked multiple times, manually and by machine.
Maybe that is why I am feeling so gross?
Either way, Esther Rivka's end of the year school party is tomorrow and I am heading to bed so I can be there bright and early with a smile on my face!
My blood pressure is totally unstable.
90/60 this am when I went for blood work
120/100 and 135/95 this afternoon before PT
both checked multiple times, manually and by machine.
Maybe that is why I am feeling so gross?
Either way, Esther Rivka's end of the year school party is tomorrow and I am heading to bed so I can be there bright and early with a smile on my face!
Sunday, June 21, 2009
and two months ago, this hour
I was out of surgery.
Ouch.
Today, for the first time in two months, I have normal calcium and phosphorus levels. I am on two alpha d3 0.25mcg twice a day, eight 600mg calcium pills, four Renagel 800mg and less than 500mg of dietary phosphorus a day.
I am praying hard it continues.
I am still twitchy but the numbness and tingling are much more bearable.
I am achy and in some pain, but nothing compared to two months, or even one month, ago.
The exhaustion continues to be a big problem. Considering I am off my thyroid medication again in a couple weeks I doubt that that is going away any time soon. Oh well.
Ouch.
Today, for the first time in two months, I have normal calcium and phosphorus levels. I am on two alpha d3 0.25mcg twice a day, eight 600mg calcium pills, four Renagel 800mg and less than 500mg of dietary phosphorus a day.
I am praying hard it continues.
I am still twitchy but the numbness and tingling are much more bearable.
I am achy and in some pain, but nothing compared to two months, or even one month, ago.
The exhaustion continues to be a big problem. Considering I am off my thyroid medication again in a couple weeks I doubt that that is going away any time soon. Oh well.
Two months and a day ago
I was still whole.
My neck was riddled with cancer, but I wasn't in pain. I wasn't exhausted. My body was still able to regulate calcium, phosphorus and thyroid hormones.
I was still cooking, cleaning, baking and doing the laundry.
I was worried about the surgery, but had no clue how worried I should have been. I was praying but had no idea how much I had to pray about.
My neck was riddled with cancer, but I wasn't in pain. I wasn't exhausted. My body was still able to regulate calcium, phosphorus and thyroid hormones.
I was still cooking, cleaning, baking and doing the laundry.
I was worried about the surgery, but had no clue how worried I should have been. I was praying but had no idea how much I had to pray about.
Thursday, June 18, 2009
I had a nice morning
My blood draw went fine, the dr's appointment was productive (lots of paperwork we needed to do and results to go over, but no surprises) and then I met up with a bunch of friends and had a bagel, salad and ice coffee. Good thing I did it BEFORE I got my lab results since my phosphorus this morning was significantly elevated, with being careful, so cheating wasn't really a great idea. Oh well. Nothing I can do about it now.
The spasm like pains in my throat continue, mostly when I laugh. It is a problem. I need to laugh to stay sane. I am not sure what to do about this.
So phosphorus up to 5.8, anemia improving (now I only have to take iron, b vitamins, and folic acid once a day), calcium still normal, and physical therapy progressing well.
The physical therapist suggested a massage and I might just look into the idea.
We are working on planning a sudas hodaa (meal of thanksgiving) and Avraham Chaim's first haircut. It will IY"H be on his third birthday which is a week from Sunday. My brother in law is coming to help cut vegis and I am sure he will help set up. I have to buy papergoods but I have no idea how many people are coming. I am going to make cream cheese, buy rolls, hummus and candies (for the kids), have family bring cakes and salads and a neighbor is making lasagna.
If I were feeling better I would make the rolls and do all the cooking and baking myself, but family and neighbors are wonderful and seeing it all come together is really heartwarming.
The spasm like pains in my throat continue, mostly when I laugh. It is a problem. I need to laugh to stay sane. I am not sure what to do about this.
So phosphorus up to 5.8, anemia improving (now I only have to take iron, b vitamins, and folic acid once a day), calcium still normal, and physical therapy progressing well.
The physical therapist suggested a massage and I might just look into the idea.
We are working on planning a sudas hodaa (meal of thanksgiving) and Avraham Chaim's first haircut. It will IY"H be on his third birthday which is a week from Sunday. My brother in law is coming to help cut vegis and I am sure he will help set up. I have to buy papergoods but I have no idea how many people are coming. I am going to make cream cheese, buy rolls, hummus and candies (for the kids), have family bring cakes and salads and a neighbor is making lasagna.
If I were feeling better I would make the rolls and do all the cooking and baking myself, but family and neighbors are wonderful and seeing it all come together is really heartwarming.
Wednesday, June 17, 2009
If you laugh you are going to cry
has replaced my normal motto of: "if you don't laugh you have to cry" again today. Well hopefully just for the morning.
When ever I laugh, cough or speak too loudly something is happening in my throat. It feels like I am being cut (or maybe zapped?) from the inside and it literally makes me cry. My guess is it is probably some sort of spasm of my vocal cords, though I have no real way of knowing. This happened before, when my calcium was very low, and lasted a couple days. I was about an hour late taking my calcium and alpha d3 this morning, because of a meeting. I wonder if that triggered it? I hope this isn't a sign that my calcium level fell again.
The nuttiest part about it... Tonight I have a "laughter for healing" workshop scheduled and I was really looking forward to going.
Maybe if I take some percoset or valium first. I wonder if either of them would touch this pain. I am not sure I want to test it out.
When ever I laugh, cough or speak too loudly something is happening in my throat. It feels like I am being cut (or maybe zapped?) from the inside and it literally makes me cry. My guess is it is probably some sort of spasm of my vocal cords, though I have no real way of knowing. This happened before, when my calcium was very low, and lasted a couple days. I was about an hour late taking my calcium and alpha d3 this morning, because of a meeting. I wonder if that triggered it? I hope this isn't a sign that my calcium level fell again.
The nuttiest part about it... Tonight I have a "laughter for healing" workshop scheduled and I was really looking forward to going.
Maybe if I take some percoset or valium first. I wonder if either of them would touch this pain. I am not sure I want to test it out.
Tuesday, June 16, 2009
It is a good thing they are cute.
It was a very long and exhausting day on the child front. B"H the two littles have the energy and will to climb and look for trouble, right? I wish I had the strength to chase them and keep them safe. It is only due to his guardian angels that Avraham Chaim ended the day in one piece, happily sleeping in his own bed.
Avraham Chaim climbed into the window (they have metal bars welded onto the outside, so no falling or getting out of the house) in the girls room this afternoon. All of them were up there playing and reading quietly. According to my older children, Avraham Chaim had fun dancing in the foot deep windowsill and invited Esther Rivka to join him. She closed the window. He pushed it back open, but it wasn't easy, when he succeeded he fell out of the window onto the girls room floor (three foot drop, stone floor) onto his belly and face. It took a while to determine that he was basically okay, one bruised thigh and a split lip, complaints about his hands, but nothing appears to be broken.
Later he climbed onto his dresser and took the glass and pictures out of the picture frames. During supper he kept on trying to get up and stand on his booster seat (see, he really is okay) and there were several incidents of climbing on things he shouldn't have interspersed throughout the day.
Mind you, I can't really complain and I am not. He is two, almost three, and I we have all been worried about his lethargy for almost two months. This is good.
On the me front, I am exhausted enough to fall asleep sitting up in the middle of the day and did so today, before AC got home while Esther Rivka was at a friend's house. I did manage to make another good lunch for everyone again though. Nothing exciting, just hot dogs and french fries, but a lunch that made everyone happy.
My calcium is still in the normal range, a bit down from Sunday, but just fine! My phosphorus is still high and has even gone up a bit, which isn't good. I am being so good about the low phosphorus diet and taking my meds so I don't understand at all.
Tomorrow I go meet with Avraham Chaim's school for next year and try to determine which class is most appropriate and I have a meeting in the evening. I hope I manage to get a nap in the middle.
Avraham Chaim climbed into the window (they have metal bars welded onto the outside, so no falling or getting out of the house) in the girls room this afternoon. All of them were up there playing and reading quietly. According to my older children, Avraham Chaim had fun dancing in the foot deep windowsill and invited Esther Rivka to join him. She closed the window. He pushed it back open, but it wasn't easy, when he succeeded he fell out of the window onto the girls room floor (three foot drop, stone floor) onto his belly and face. It took a while to determine that he was basically okay, one bruised thigh and a split lip, complaints about his hands, but nothing appears to be broken.
Later he climbed onto his dresser and took the glass and pictures out of the picture frames. During supper he kept on trying to get up and stand on his booster seat (see, he really is okay) and there were several incidents of climbing on things he shouldn't have interspersed throughout the day.
Mind you, I can't really complain and I am not. He is two, almost three, and I we have all been worried about his lethargy for almost two months. This is good.
On the me front, I am exhausted enough to fall asleep sitting up in the middle of the day and did so today, before AC got home while Esther Rivka was at a friend's house. I did manage to make another good lunch for everyone again though. Nothing exciting, just hot dogs and french fries, but a lunch that made everyone happy.
My calcium is still in the normal range, a bit down from Sunday, but just fine! My phosphorus is still high and has even gone up a bit, which isn't good. I am being so good about the low phosphorus diet and taking my meds so I don't understand at all.
Tomorrow I go meet with Avraham Chaim's school for next year and try to determine which class is most appropriate and I have a meeting in the evening. I hope I manage to get a nap in the middle.
Monday, June 15, 2009
Great resource!
http://www.davita.com/recipes/
This site has "kidney" friendly recipes including the dietary information for each serving.
Most of them are low phosphorus and lots of them look really yummy.
IY"H once I have more energy to cook and plan meals this site is going to get lots of good use.
This site has "kidney" friendly recipes including the dietary information for each serving.
Most of them are low phosphorus and lots of them look really yummy.
IY"H once I have more energy to cook and plan meals this site is going to get lots of good use.
Good morning!
Yesterday was a productive day. I got all the laundry folded and put away, the girls cleaned their room (aka put the laundry from under their bed and their closet flood into the laundry room). That means today is another laundry washing day. :) Life goes on!
Labs came back a lot better yesterday. Calcium was normal at 9.2 and my phosphorus was only 4.6, so barely elevated. It seems that something is going right. I assume the change was from the medication schedule change, so we will be keeping the new schedule. Calcium and Renagel are now being taken with each meal, four times a day, together without worry that the Renagel is decreasing calcium absorption.
I also got the results from my PTH testing which was done last Wednesday, while my calcium was very low and phosphorus high. My PTH was undetectable, which is not good news. Last time we did the testing we got the same result but my calcium was high, so we were hoping that that was why. With my calcium low and phosphorus high my parathyroid should have been putting out plenty of hormones and the results should have been quite different. I am realy starting to fear that this is going to be a long term issue. I hope it gets easier soon.
Labs came back a lot better yesterday. Calcium was normal at 9.2 and my phosphorus was only 4.6, so barely elevated. It seems that something is going right. I assume the change was from the medication schedule change, so we will be keeping the new schedule. Calcium and Renagel are now being taken with each meal, four times a day, together without worry that the Renagel is decreasing calcium absorption.
I also got the results from my PTH testing which was done last Wednesday, while my calcium was very low and phosphorus high. My PTH was undetectable, which is not good news. Last time we did the testing we got the same result but my calcium was high, so we were hoping that that was why. With my calcium low and phosphorus high my parathyroid should have been putting out plenty of hormones and the results should have been quite different. I am realy starting to fear that this is going to be a long term issue. I hope it gets easier soon.
Friday, June 12, 2009
I am failing this low phosphorus thing
The more I learn the more I realize that I have no clue what I am doing.
My dietitian appointment is in July so I have to figure this out on my own.
Nephrologist recommended limiting my diet to less than 500mg of phosphorus a day. Once I got a number I started researching individual foods. It turns out that one cup if milk is 247mg, cup of lentils is 356mg, a corn muffin is 395mg, 1oz of American cheese is 211mg, 3.5oz of chicken is 228mg, 3oz of liver 392mg and 3oz of fish is 292mg.
It looks like most fruit is less than 30mg per serving. An egg is only 86mg of phosphorus and coolwhip and popsicles have no phosphorus at all. A slice of bologna, which I was prevoiusly under the impression was like poison, is only 43mg and a slice of whole wheat bread 64mg, which is high compared to white bread (24mg) but not nearly as bad as a bowl of oatmeal (176mg).
All in all, I have a lot to learn, a lot of research to do, and am getting a good idea why my "low phosphorus" diet wasn't doing what we wanted it to.
My dietitian appointment is in July so I have to figure this out on my own.
Nephrologist recommended limiting my diet to less than 500mg of phosphorus a day. Once I got a number I started researching individual foods. It turns out that one cup if milk is 247mg, cup of lentils is 356mg, a corn muffin is 395mg, 1oz of American cheese is 211mg, 3.5oz of chicken is 228mg, 3oz of liver 392mg and 3oz of fish is 292mg.
It looks like most fruit is less than 30mg per serving. An egg is only 86mg of phosphorus and coolwhip and popsicles have no phosphorus at all. A slice of bologna, which I was prevoiusly under the impression was like poison, is only 43mg and a slice of whole wheat bread 64mg, which is high compared to white bread (24mg) but not nearly as bad as a bowl of oatmeal (176mg).
All in all, I have a lot to learn, a lot of research to do, and am getting a good idea why my "low phosphorus" diet wasn't doing what we wanted it to.
Thursday, June 11, 2009
nothing much to report
I complained to my doctor about the fatigue yesterday and her reply was "of course you are exhausted. People who have the surgery you had take a year or two to get their energy back plus you are having calcium issues which would cause the fatigue on its own."
So yes, I am exhausted, but I am also tired of being exhausted.
I spent the day at home today and honestly don't feel much better than when I am out and about taking care of things. I am totally wiped and I didn't do anything.
It is much nicer when I can at least blame my exhaustion on going places and running around to appointment or even going out to places for pleasure.
I think that since I am so tired anyway I should go out and make a good excuse for why I feel so lousy. One of my friends also needs some fresh air so we may go to Har Nof for frozen yogurt after we get the children in bed.
So yes, I am exhausted, but I am also tired of being exhausted.
I spent the day at home today and honestly don't feel much better than when I am out and about taking care of things. I am totally wiped and I didn't do anything.
It is much nicer when I can at least blame my exhaustion on going places and running around to appointment or even going out to places for pleasure.
I think that since I am so tired anyway I should go out and make a good excuse for why I feel so lousy. One of my friends also needs some fresh air so we may go to Har Nof for frozen yogurt after we get the children in bed.
Wednesday, June 10, 2009
What a day
If I don't have to go anywhere tomorrow it will be perfect.
Today was too much.
I went to Jerusalem for the blood draw today so we could test parathyroid levels, which is a time dependent test so it has to be drawn in the main lab. I got there to find out that they moved the main lab. It was only a couple blocks away, but really, that wasn't cool.
From the lab I walked to the bus stop via the shuk. It was fun. I bought whole wheat pitas for PDZ,. He will enjoy them even though I can't eat them. They are good but they are full of phosphorus and I would rather cheat on chocolate if I am going to cheat. I bought him a bag of six and quickly figured out that even if I had money to spend that was all I was carrying the rest of the way to the bus.
It wasn't a quick trip in the end. I left the house at 8:30am and I got home at 12:30pm, too late to nap before the kids got home, they came home happy though. They were even happier when I let them make pizza out of (non whole wheat) pitas for lunch. It was a fun project for them.
Napping today was not happening. My doctor called and insisted on an appointment this evening. I was out of lab slips, so I needed to see her anyway. A 6:15pm appointment was made, but that meant no nap while the babysitter was here from 5-7pm. It also means that I didn't have to take all of the kids to the appointment or find a babysitter. She was already found! Not a bad trade off.
The end of the story is, despite feeling less tingling and twitching my calcium is down more and my phosphorus is on its way up. It was 6.0 before the Renagel, down to 4.8 two days after starting it (under 4.5 is normal so we were close) and has gone up steadily from there and is 5.4 now. My calcium has also gone down quite steadily since I started the Renagel, which is the opposite of what we wanted and expected. Since I am feeling better she isn't pushing for IV calcium now, but she did call the nephrologist while I was there. He is going on vacation on the 26th and wants this heading in a better direction before then. The hope is that the Renagel will still do what it should, which is lower the phosphorus so that my calcium levels can stabilize (in the normal range please!). They are going to continue checking blood levels every two days and decide what to do next week. For now we are just holding tight.
My PCP also referred me to a dietician. She is hoping that she can help me with the low phosphorus diet and help me figure out how to get more protein into my diet.
I am so incredibly tired. I can't finish the update. I hope to write more tomorrow.
Today was too much.
I went to Jerusalem for the blood draw today so we could test parathyroid levels, which is a time dependent test so it has to be drawn in the main lab. I got there to find out that they moved the main lab. It was only a couple blocks away, but really, that wasn't cool.
From the lab I walked to the bus stop via the shuk. It was fun. I bought whole wheat pitas for PDZ,. He will enjoy them even though I can't eat them. They are good but they are full of phosphorus and I would rather cheat on chocolate if I am going to cheat. I bought him a bag of six and quickly figured out that even if I had money to spend that was all I was carrying the rest of the way to the bus.
It wasn't a quick trip in the end. I left the house at 8:30am and I got home at 12:30pm, too late to nap before the kids got home, they came home happy though. They were even happier when I let them make pizza out of (non whole wheat) pitas for lunch. It was a fun project for them.
Napping today was not happening. My doctor called and insisted on an appointment this evening. I was out of lab slips, so I needed to see her anyway. A 6:15pm appointment was made, but that meant no nap while the babysitter was here from 5-7pm. It also means that I didn't have to take all of the kids to the appointment or find a babysitter. She was already found! Not a bad trade off.
The end of the story is, despite feeling less tingling and twitching my calcium is down more and my phosphorus is on its way up. It was 6.0 before the Renagel, down to 4.8 two days after starting it (under 4.5 is normal so we were close) and has gone up steadily from there and is 5.4 now. My calcium has also gone down quite steadily since I started the Renagel, which is the opposite of what we wanted and expected. Since I am feeling better she isn't pushing for IV calcium now, but she did call the nephrologist while I was there. He is going on vacation on the 26th and wants this heading in a better direction before then. The hope is that the Renagel will still do what it should, which is lower the phosphorus so that my calcium levels can stabilize (in the normal range please!). They are going to continue checking blood levels every two days and decide what to do next week. For now we are just holding tight.
My PCP also referred me to a dietician. She is hoping that she can help me with the low phosphorus diet and help me figure out how to get more protein into my diet.
I am so incredibly tired. I can't finish the update. I hope to write more tomorrow.
Tuesday, June 9, 2009
Esther Rivka's preschool birthday party was today
her birthday is in the summer, but today was the day that the teachers picked to celebrate.
It was nice.
I cried.
I am glad I brought tissues.
I have lots more to say, but I am exhausted.
My calcium levels were low, phosphorus high yesterday. Tomorrow I have to go into Jerusalem for blood tests. It seems the Renagel was not the magic I was expecting. I would have gone back for more blood test today but I was too busy being the proud mushy blubbering over a birthday party mother.
It was nice.
I cried.
I am glad I brought tissues.
I have lots more to say, but I am exhausted.
My calcium levels were low, phosphorus high yesterday. Tomorrow I have to go into Jerusalem for blood tests. It seems the Renagel was not the magic I was expecting. I would have gone back for more blood test today but I was too busy being the proud mushy blubbering over a birthday party mother.
Sunday, June 7, 2009
Getting there!
I am B"H feeling much better today. I have very little numbness and tingling and my lip twitching is there but minimal. My calcium is the very lowest end of the normal range, which is a huge relief but isn't what we were expecting with the new drug. It was expected that as my phosphorus went down (due to the medication) my calcium levels would go up. My phosphorus is down, but not yet normal.
The surgeon said that the strangling feeling I am experiencing is normal. He had an explanation that included collagen regrowth, etc but I can't pretend to understand. Basically, he said it is healing as is expected and to expect to spend the next year feeling like I am being choked.
He wasn't thrilled about my thyroglobulin level (11.9 Thursday) but said that due to the completeness of my neck dissection that once I have done the RAI he expects there to be only a 20% chance that I will need further surgery on my neck. It is obviously all in God's hands, but we are looking at good statistics.
I know I am thinking too much, and am trying not to borrow worry, but his surprise at the 11.9 has me a little more worried about distant spread. There is nothing to do but pray and wait. My whole body scan is August 19th.
There isn't much else scheduled for this week except Esther Rivka's school birthday party on Tuesday and I have to make the children appointments with the new pediatrician. The old pediatrician handed over all of their records before he stopped coming to the city, but I was told to make well appointments so the new ped has seen them while well so I guess I should do that.
The surgeon said that the strangling feeling I am experiencing is normal. He had an explanation that included collagen regrowth, etc but I can't pretend to understand. Basically, he said it is healing as is expected and to expect to spend the next year feeling like I am being choked.
He wasn't thrilled about my thyroglobulin level (11.9 Thursday) but said that due to the completeness of my neck dissection that once I have done the RAI he expects there to be only a 20% chance that I will need further surgery on my neck. It is obviously all in God's hands, but we are looking at good statistics.
I know I am thinking too much, and am trying not to borrow worry, but his surprise at the 11.9 has me a little more worried about distant spread. There is nothing to do but pray and wait. My whole body scan is August 19th.
There isn't much else scheduled for this week except Esther Rivka's school birthday party on Tuesday and I have to make the children appointments with the new pediatrician. The old pediatrician handed over all of their records before he stopped coming to the city, but I was told to make well appointments so the new ped has seen them while well so I guess I should do that.
Friday, June 5, 2009
Scar 6.5 weeks post op
This is my scar today, about a month and a half post op. My neck is still swollen, but it is healing nicely and should fade eventually. The muscles on that side of my neck are still very tense and tight and obviously the feeling isn't back yet.
I am back on my Eltroxin and hoping that it kicks back in soon. I am looking forward to having some energy and mental clarity. I told the people who had been sending meals during the week that I would be able to deal with it on my own starting next week. I am a bit worried, a bit excited and hoping I am not pushing too hard, pretending all is well, too soon.
The Renagel may be doing something. Either way my body is happier. I am less twitchy, crampy and numb today. It will be interesting to see what my lab results are on Sunday. Too bad they won't be back until after I see the surgeon Sunday morning. I hoping that the horrific heartburn that woke me up this morning and has been winning over the Tums isn't related to the Renagel. I guess if it is I will start meds for that too. With 28 pills a day plus pain meds, what would one more be? Sigh. I don't want to.
We are getting ready for Shabbos and don't have any appointments or labs until Sunday! It is a well needed break. I look forward to the one day a week that the children don't have school, the phone doesn't ring and the computer sits quietly. I expect a lot of good snuggling, board games, food and talks. The big girls have really been enjoying Othello the last couple weeks.
Neighbors are sending over salads and a cholent. I am pulling soup, potato kuggel, and challah out of the freezer and PDZ made chicken and will be making eggs and noddles.
I am going to go take a nap!
Thursday, June 4, 2009
Not cool
Avraham Chaim just threw up in his bed, laying flat on his back, without waking up.
This is not cool on a lot of levels. He better not be getting sick and he better not have aspirated on it, like he used to when this was a regular habit. I thought he was done with the vomiting.
His timing we perfect though. PDZ was on his way out the door to work but hadn't left yet so he is taking care of the mess. I expect that AC will still need a bath though.
The good news is; my calcium was 9.2, which is very nice and normal! My phosphorus was 6.0 which is very not normal. Good thing that I filled the Renagel prescription today. I want to feel whole and have energy. If we can get these things under control maybe I will soon.
This is not cool on a lot of levels. He better not be getting sick and he better not have aspirated on it, like he used to when this was a regular habit. I thought he was done with the vomiting.
His timing we perfect though. PDZ was on his way out the door to work but hadn't left yet so he is taking care of the mess. I expect that AC will still need a bath though.
The good news is; my calcium was 9.2, which is very nice and normal! My phosphorus was 6.0 which is very not normal. Good thing that I filled the Renagel prescription today. I want to feel whole and have energy. If we can get these things under control maybe I will soon.
Low key day
I had a blood draw today, but wonder if the lab noticed it was marked stat. The results should have been in by 2pm and it is after that. Neurologically I feel like my calcium level is higher, and considering the fact that the surgeon upped me to 9.6 grams (16 pills) of calcium a day and 1.25mcg of the alpha D3 my calcium better not be low any more. My blood calcium levels seem to have very little to do with the amount of calcium and alpha d3 I am taking at this point though.
The scary thing is, high calcium is just as dangerous as low calcium and we can't seem to get it right. I am really worried that the increasing the calcium and alpha d3 so much all at once was a bad idea.
We still didn't get approval for the Renagel so the doctor told me to just buy it because we can't keep on playing around with calcium level swings like this. It isn't safe. $400 later I have a months supply. There is a possibility that we will get some of that money back when the insurance approval comes in. It is worth it to be able to stay home and if it stabilizes my calcium levels it is worth double that.
The problem is, there is no way to do labs outside of the hospital until Sunday. Starting it today seems risky, but so it leaving things the way they are.
I have to make a doctor's appointment for Avraham Chaim. His tube site is starting to look infected.
I am so tired of the fighting, waiting, worrying and being tired.
I need to find something to smile about today. It was a long week and I am totally exhausted.
The scary thing is, high calcium is just as dangerous as low calcium and we can't seem to get it right. I am really worried that the increasing the calcium and alpha d3 so much all at once was a bad idea.
We still didn't get approval for the Renagel so the doctor told me to just buy it because we can't keep on playing around with calcium level swings like this. It isn't safe. $400 later I have a months supply. There is a possibility that we will get some of that money back when the insurance approval comes in. It is worth it to be able to stay home and if it stabilizes my calcium levels it is worth double that.
The problem is, there is no way to do labs outside of the hospital until Sunday. Starting it today seems risky, but so it leaving things the way they are.
I have to make a doctor's appointment for Avraham Chaim. His tube site is starting to look infected.
I am so tired of the fighting, waiting, worrying and being tired.
I need to find something to smile about today. It was a long week and I am totally exhausted.
Wednesday, June 3, 2009
More lab results and contraceptive ramblings, real proof that I am talking to myself.
Am I allowed to laugh when results come back like this?
TSH > 100.00 mIU/L normal 0.35-4.94 (.........)*
I wonder what the lab tech thought when she saw that?
On a good note, even with my TSH stimulated, my thyroglobulin was still only 11.
The goal is zero, but we realistically don't expect to see that until well after the RAI.
My calcium levels are concerning but I declined a visit to the ER for IV calcium. I think it is on its way up. In some ways I am feeling a bit better. We shall see what tomorrows draw shows. I just hope that they get the results back quickly this time!
My PCP is out of the office tomorrow and gave me her home and cell phone numbers in case I need her. I think that by now I can change med doses based on lab results and symptoms, but it is great to know she cares.
I have to talk to the rav again about pregnancy prevention. The gyn could only come up with one viable option and the rav wasn't excited about that option when I spoke to him before the appointment. Honestly neither was I. There are too many health issues involved in the choice though. We need to figure it out. The gyn says that the high thyroid levels wouldn't necessarily make me infertile but could cause major mental retardation in the baby and glowing in the dark from radiation wouldn't be a great benefit either.
I can't believe this cancer has the power to control my reproductive status. It is a very big blow. The scars don't bother me, the pain I can deal with, the weight gain despite lack of appetite doesn't thrill me, but I am not crying over it. I really wanted one healthy, nursing baby after all I went through with Avraham Chaim though. I thought it would be healing. It is a dream I nurtured for quite a while. I guess what I thought I needed wasn't what I really needed though. God knows better.
I have been warned that the first year after the RAI I shouldn't avoid pregnancy and that after that pregnancy hormones have the ability to activate cancer growth so unless the scans are totally clean, and even if they are, it is a risk that needs to be weighed.
There is a lot to think about. The good thing is, I have at least a year to do so. We aren't making any permanent decisions now.
TSH > 100.00 mIU/L normal 0.35-4.94 (.........)*
I wonder what the lab tech thought when she saw that?
On a good note, even with my TSH stimulated, my thyroglobulin was still only 11.
The goal is zero, but we realistically don't expect to see that until well after the RAI.
My calcium levels are concerning but I declined a visit to the ER for IV calcium. I think it is on its way up. In some ways I am feeling a bit better. We shall see what tomorrows draw shows. I just hope that they get the results back quickly this time!
My PCP is out of the office tomorrow and gave me her home and cell phone numbers in case I need her. I think that by now I can change med doses based on lab results and symptoms, but it is great to know she cares.
I have to talk to the rav again about pregnancy prevention. The gyn could only come up with one viable option and the rav wasn't excited about that option when I spoke to him before the appointment. Honestly neither was I. There are too many health issues involved in the choice though. We need to figure it out. The gyn says that the high thyroid levels wouldn't necessarily make me infertile but could cause major mental retardation in the baby and glowing in the dark from radiation wouldn't be a great benefit either.
I can't believe this cancer has the power to control my reproductive status. It is a very big blow. The scars don't bother me, the pain I can deal with, the weight gain despite lack of appetite doesn't thrill me, but I am not crying over it. I really wanted one healthy, nursing baby after all I went through with Avraham Chaim though. I thought it would be healing. It is a dream I nurtured for quite a while. I guess what I thought I needed wasn't what I really needed though. God knows better.
I have been warned that the first year after the RAI I shouldn't avoid pregnancy and that after that pregnancy hormones have the ability to activate cancer growth so unless the scans are totally clean, and even if they are, it is a risk that needs to be weighed.
There is a lot to think about. The good thing is, I have at least a year to do so. We aren't making any permanent decisions now.
Scan done!
It looks like we can try the RAI without doing another surgery first!! The cut off was 5 on the scan results and we squeaked in under that. I have no idea what the results mean, but I got a pretty spotted multicolor picture and the oncologist got a copy of it as well. She seemed happy enough so I will be as well.
I barely saw the oncologist (I didn't have an appt, was just told to stop by with the results, she came down to see them and went back to where ever she had been previously) but I spent quite a bit of time with her nurse, which couldn't explain the results any better than I can. That was a bit frustrating, but I am sure google will be my friend at some point and explain everything to me.
What the nurse could tell me: I am scheduled for 150mci of RAI on August 9th. I can't be home, near my children, for a full week. The first three days are in isolation in the hospital. I get a room with my own phone (I have the number already), a water cooler, a fridge and a private bathroom. I have to shower three times a day, must NOT vomit and need to suck on sour candies to try to prevent salivary gland damage. Blood draws for two weeks are an issue, the blood will be radioactive, so we better get the calcium issues under control before then! While I am in isolation the nurses will not come into the room. No one will come into my room. I have phone numbers to call the nurse if there is a problem.
On August 19th I have a whole body scan scheduled. I have to call tomorrow to find out what time.
My calcium is low again (7.9 - normal 8.6-10.2) which hopefully explains why I feel like I do. Walking today has been an issue. I have to think and work on picking up the toes on my right foot or it just drags. I probably should have just gone to the ER and gotten IV calcium instead of coming home after my scan today but I didn't have the results yet. I really don't have the energy to go back.
Outside of that things went pretty smoothly today. My ride to the hospital worked out nicely. There wasn't much of a wait for the scan. The oncologist and her nurse took good care of me. I enjoyed my ice coffee. I got a ride right to my bus stop. My bus came pretty much right away and now I am home for a bit.
The girls should be home soon so I need to log off and pretend to be wide awake and at least mentally there for them! Thank God lunch is being delivered or I would be in big trouble.
I barely saw the oncologist (I didn't have an appt, was just told to stop by with the results, she came down to see them and went back to where ever she had been previously) but I spent quite a bit of time with her nurse, which couldn't explain the results any better than I can. That was a bit frustrating, but I am sure google will be my friend at some point and explain everything to me.
What the nurse could tell me: I am scheduled for 150mci of RAI on August 9th. I can't be home, near my children, for a full week. The first three days are in isolation in the hospital. I get a room with my own phone (I have the number already), a water cooler, a fridge and a private bathroom. I have to shower three times a day, must NOT vomit and need to suck on sour candies to try to prevent salivary gland damage. Blood draws for two weeks are an issue, the blood will be radioactive, so we better get the calcium issues under control before then! While I am in isolation the nurses will not come into the room. No one will come into my room. I have phone numbers to call the nurse if there is a problem.
On August 19th I have a whole body scan scheduled. I have to call tomorrow to find out what time.
My calcium is low again (7.9 - normal 8.6-10.2) which hopefully explains why I feel like I do. Walking today has been an issue. I have to think and work on picking up the toes on my right foot or it just drags. I probably should have just gone to the ER and gotten IV calcium instead of coming home after my scan today but I didn't have the results yet. I really don't have the energy to go back.
Outside of that things went pretty smoothly today. My ride to the hospital worked out nicely. There wasn't much of a wait for the scan. The oncologist and her nurse took good care of me. I enjoyed my ice coffee. I got a ride right to my bus stop. My bus came pretty much right away and now I am home for a bit.
The girls should be home soon so I need to log off and pretend to be wide awake and at least mentally there for them! Thank God lunch is being delivered or I would be in big trouble.
Tuesday, June 2, 2009
24 hour urine collection while radioactive?
I doubt they really want it.
I can't believe they asked for it.
I am supposed to flush the toilet twice every time I use it, be careful about hand washing and collect 24 hours worth of urine at the same time?
I think this will wait a week or so.
It looks like my calcium level won't be in today. I have no idea how much alpha D3 I should be taking tonight. My phosphorus is up more though and the approval for the Renagel isn't in. The secretary can't tell if it was turned down or just not approved yet.
I just got a phone call from the organization who is supposed to be driving me to my scan tomorrow... they can't at 7:30am or even 7:45am. The first they have available is 8:10am. It is minimally 30 minutes from here to there and I have an 8:30am appointment. I doubt that 8:40am would be a big deal if it works out, but I hate pushing thing like that. It really stresses me out. I could pay $20 for a private cab to drive me, but I am not sure I can justify it when I have a way of getting there for free.
The good thing is, I am too tired to be worried about tomorrow. The house was cleaned this morning and the kids are finally quiet, hopefully asleep for the night. Tomorrow after my scan I can eat normal food and there is an ice coffee calling my name.
I can't believe they asked for it.
I am supposed to flush the toilet twice every time I use it, be careful about hand washing and collect 24 hours worth of urine at the same time?
I think this will wait a week or so.
It looks like my calcium level won't be in today. I have no idea how much alpha D3 I should be taking tonight. My phosphorus is up more though and the approval for the Renagel isn't in. The secretary can't tell if it was turned down or just not approved yet.
I just got a phone call from the organization who is supposed to be driving me to my scan tomorrow... they can't at 7:30am or even 7:45am. The first they have available is 8:10am. It is minimally 30 minutes from here to there and I have an 8:30am appointment. I doubt that 8:40am would be a big deal if it works out, but I hate pushing thing like that. It really stresses me out. I could pay $20 for a private cab to drive me, but I am not sure I can justify it when I have a way of getting there for free.
The good thing is, I am too tired to be worried about tomorrow. The house was cleaned this morning and the kids are finally quiet, hopefully asleep for the night. Tomorrow after my scan I can eat normal food and there is an ice coffee calling my name.
I have no patience.
Urgent lab results are usually in by 2pm. It is now almost 6pm and my calcium and phosphorus levels aren't back.
I am more anemic than last week though, despite taking the iron/folic acid/b12 that is prescription only and usually once a day, twice a day (as per doctors orders) for a month and a half now. ;) I will blame it on all the blood draws.
I am more anemic than last week though, despite taking the iron/folic acid/b12 that is prescription only and usually once a day, twice a day (as per doctors orders) for a month and a half now. ;) I will blame it on all the blood draws.
Well okay, that was odd
I got to my doctor's office at 7:45am as they were opening and waited for the nurse to come to draw my blood. By 8:10am I was on my way to the hospital (for my 8am appointment). I got there in record time. I checked in at 8:40am and sat and waited for an hour. They finally came and got me and gave me a pill with radioactive symbol pictures all over it. They told me to continue fasting for another hour and come back tomorrow.
What happened to the scan an hour after the pill today? I have it written in my oncologist's handwriting that there were to be two scans, today an hour after the radioactive iodine and tomorrow 24 hours after.
Neither the oncologist nor her nurse work today so I came home. I guess I could have called the oncologist's cell phone but I didn't think of that fast enough. My ride was on its way and my brain is functioning too slowly.
I hope the scan tomorrow is enough!
It was crazy trying to get back home. I obviously did, since I am here typing, but the person who agreed to drive me from the hospital to the mall to catch a bus didn't. He dropped me off at a major intersection not too far from the bus stop under normal circumstances. Fasting and exhausted, wearing uncomfortable shoes in the heat didn't feel so normal. It took me 12 minutes to walk, though it probably should have only taken seven.
While I was on the bus I called the pharmacy to check and was told that my Renagel prescription was authorized, so I stopped at there on the way home to take care of that. In the end it wasn't yet, but I did buy popsicles on sale around the corner while waiting for a different bus home. I hope the kids will be happy.
My blood pressure Sunday was 142/92 and this morning was down to 126/70. I wonder if that means my calcium is back up. God willing, results should be in in a couple hours. I am very tingly, which is a sign of low calcium, but I had to wait to take my calcium and alpha D3 until 10:30am because I was fasting, so that may explain it.
I will be back to update once blood test results are in!
What happened to the scan an hour after the pill today? I have it written in my oncologist's handwriting that there were to be two scans, today an hour after the radioactive iodine and tomorrow 24 hours after.
Neither the oncologist nor her nurse work today so I came home. I guess I could have called the oncologist's cell phone but I didn't think of that fast enough. My ride was on its way and my brain is functioning too slowly.
I hope the scan tomorrow is enough!
It was crazy trying to get back home. I obviously did, since I am here typing, but the person who agreed to drive me from the hospital to the mall to catch a bus didn't. He dropped me off at a major intersection not too far from the bus stop under normal circumstances. Fasting and exhausted, wearing uncomfortable shoes in the heat didn't feel so normal. It took me 12 minutes to walk, though it probably should have only taken seven.
While I was on the bus I called the pharmacy to check and was told that my Renagel prescription was authorized, so I stopped at there on the way home to take care of that. In the end it wasn't yet, but I did buy popsicles on sale around the corner while waiting for a different bus home. I hope the kids will be happy.
My blood pressure Sunday was 142/92 and this morning was down to 126/70. I wonder if that means my calcium is back up. God willing, results should be in in a couple hours. I am very tingly, which is a sign of low calcium, but I had to wait to take my calcium and alpha D3 until 10:30am because I was fasting, so that may explain it.
I will be back to update once blood test results are in!
Monday, June 1, 2009
Back from Zlata Tova's appointment
and I want to celebrate.
She is 25% for height, 10% for weight. She used to be many many standard deviations below the chart. She was 22lbs at five years old before we found out about the pancreatic insufficiency.
At 11 years and 1 month she has been discharged from endocrinology because she is growing so well!!
The doctor is predicting an adult height of 160cm.
She is 25% for height, 10% for weight. She used to be many many standard deviations below the chart. She was 22lbs at five years old before we found out about the pancreatic insufficiency.
At 11 years and 1 month she has been discharged from endocrinology because she is growing so well!!
The doctor is predicting an adult height of 160cm.
I (almost) blew that
Zlata Tova has an endocrinologist appointment at 5pm tonight. I knew about it for quite a while. I have babysitters planned and thought I was ready to go.
All of the sudden at 2pm I panicked and decided we hadn't done the blood tests we needed. I called to cancel and was told the next available appointment was in October. I thought there was nothing I could do but make a new appointment. I was rescheduling when I realized... we did the labs the endocrinologist wanted when we did her labs for the nephrologist before Pesach. B"H I realized before I got off the phone and the appointment was given to someone else.
My brain hypothyroid, hypocalcemic, with too many important things to remember just can't function as it used to. I have felt mentally slow since the surgery and it is things like this that make it a bit scary. I know I am legally not allowed to drive because my brain is chemically altered (since I am still very hypothyroid) but I have been at least pretending I could still remember what I needed to when I needed to.
All of the sudden at 2pm I panicked and decided we hadn't done the blood tests we needed. I called to cancel and was told the next available appointment was in October. I thought there was nothing I could do but make a new appointment. I was rescheduling when I realized... we did the labs the endocrinologist wanted when we did her labs for the nephrologist before Pesach. B"H I realized before I got off the phone and the appointment was given to someone else.
My brain hypothyroid, hypocalcemic, with too many important things to remember just can't function as it used to. I have felt mentally slow since the surgery and it is things like this that make it a bit scary. I know I am legally not allowed to drive because my brain is chemically altered (since I am still very hypothyroid) but I have been at least pretending I could still remember what I needed to when I needed to.
Welcome
This blog is for me but you are welcome to listen in if you would like.
It is my place to talk to myself and record my journey. Right now I am on the roller coaster of advanced thyroid cancer and would love to get off. I am also dealing with children with a host of medical issues that I can't just ignore, though I wish it were an option. Nothing can go on hold and no one else is able to do my juggling act for me. Want to be or not, I must be superwoman.
Yesterday I had my first Thyrogen shot, today my second. $1k each. Ouch. They have effected me emotionally more than I expected. I am weepy and feeling down which is really hard considering the fact that I have a very busy week and too much to do. Yesterday I had the injection, a blood draw and three appointments. Today was the second injection and Zlata Tova has an endocrinologist appointment in Jerusalem this afternoon (and PDZ is working, so I have to figure out child care for the others) and dealing with lots of paper work for referrals and prior approvals.
The nephrologist thinks that Renagel would help the calcium situation. It is phosphorus binder. Right now my calcium levels are swinging wildly. My parathyroid isn't doing its job at all (my PTH level is < 3 ) so I am on alpha D3 to help absorb the calcium and 4.8 grams of calcium split into four doses a day. The alpha D3 we keep on adjusting according to my calcium levels, but so far we haven't found one that is holding things steady. The nephrologist thinks that that is because my parathyroid should also be controlling my phosphorus level, which it isn't. My phosphorus is very high and that is effecting my calcium levels. If I understood him correctly, phosphorus binds with calcium, which would explain why even if when I do have normal calcium levels I am neurologically appearing to be hypocalcemic.
The problem is, Renagel is expensive. Insurance usually only covers it for end stage kidney disease patients on dialysis. Thank God, I am not. What they don't understand is how yucky it feels to by hypo or hypercalcemic and how much it is effecting my life. My PCP and nephrologist are fighting for it. It costs about the same as two trips to the ER for IV calcium a month and could potentially eliminate the need for the trips. Maybe we will get it covered. Maybe not. I want the numbness, tingling, muscle spasms and fatigue gone and think it is worth a try.
One piece of good news is, we have given up on the low phosphorus part of my diet, so I have more things I can eat. My phosphorus wasn't staying in control with diet. Now I am just on low iodine and enjoying the fact that I have some food choices again. I can eat whole grains, seeds, nuts, chocolate, and drink soda. I am not normally a soda drinker, but I need some caffeine to get me through this week. I am still not allowed to have dairy, egg yolks, sea products (including sea salt, which is most of the salt here, and fish), some beans, red dye, molasses, soy, or potato skins because of the iodine, but that is much more manageable than both diets at once!
After my scans Wednesday, before my oncologist appointment, I plan on having a nice big cup of iced coffee at the mall attached to the hospital. I am not sure if a want a tuna sandwich or a home made pizza for lunch, but what ever it will be will be high in iodine. :)
Tomorrow is the first part of my Uptake Scan. I am a little worried. The scan is just of my neck (though we know there may be more distant metastasis) and will determine the dose for my radioactive iodine (RAI) in August and whether I need more surgery before the RAI. Any nodes that show up in my neck on the scan will have to be surgically removed. The RAI is only effective on the traces left behind, not actual tumors.
My surgeon is a wonderful man, was very thorough and took out almost a hundred lymph nodes three tumors and my whole thyroid, but what he did was only a unilateral neck dissection because the ultrasound on the left half of my neck looked okay. I hope it was the right choice. I can't imagine going through the surgery all over again. Knowing how hard the surgery is and how hard the recovery is will make the anticipation that much worse. It would be much better not to have to do it.
Calcium yesterday 8.9 (normal 8.6-10.2) up from 7.8 last Wednesday. We are still sticking with 0.5 of the alpha D3 twice a day. I feel hypocalcemic, though nothing like I did last week when I was ready to crawl out of my skin. The numbness and tingling are there, but can be changed by shifting weight and pressure points, not holding the phone for too long, etc. The cramping in happening but not waking me up at night. I am definitely feeling better in that regards.
TSH was down to 11.14 on my labs from last Wednesday!! It is still a far cry from our goal of .01-.02 (normal is 0.03-3, but due to the cancer they like to keep the thyroid stimulating hormone (TSH) suppressed so it doesn't stimulate cancerous thyroid cells to grow) but it is much much better than the numbers in the 30s and 50s we have been getting until now. I have heard that as long as the TSH is high the fatigue is the same, no matter how high, but I am not sure that is true for me. I certainly was feeling much much less hypothyroid until the Thyrogen shot yesterday.
My Thyroglobulin is up from 9.0 to 11.2. Goal on that is zero. The RAI will hopefully take care of that. Under 2 unsuppressed is usually just a watch and wait scenario. Considering those are suppressed numbers, which should be lower, right now it is clear that either more surgery or hopefully just the RAI is needed. Hopefully my unsuppressed labs tomorrow won't have higher numbers.
Sorry, if you are listening in and I am not making sense. I don't have the energy to explain everything properly and get it all down as well. Starting this blog months into my journey, when I don't have the time or energy to catch anyone up (I barely have the energy to get through each day), isn't exactly ideal but neither is the situation.
It is my place to talk to myself and record my journey. Right now I am on the roller coaster of advanced thyroid cancer and would love to get off. I am also dealing with children with a host of medical issues that I can't just ignore, though I wish it were an option. Nothing can go on hold and no one else is able to do my juggling act for me. Want to be or not, I must be superwoman.
Yesterday I had my first Thyrogen shot, today my second. $1k each. Ouch. They have effected me emotionally more than I expected. I am weepy and feeling down which is really hard considering the fact that I have a very busy week and too much to do. Yesterday I had the injection, a blood draw and three appointments. Today was the second injection and Zlata Tova has an endocrinologist appointment in Jerusalem this afternoon (and PDZ is working, so I have to figure out child care for the others) and dealing with lots of paper work for referrals and prior approvals.
The nephrologist thinks that Renagel would help the calcium situation. It is phosphorus binder. Right now my calcium levels are swinging wildly. My parathyroid isn't doing its job at all (my PTH level is < 3 ) so I am on alpha D3 to help absorb the calcium and 4.8 grams of calcium split into four doses a day. The alpha D3 we keep on adjusting according to my calcium levels, but so far we haven't found one that is holding things steady. The nephrologist thinks that that is because my parathyroid should also be controlling my phosphorus level, which it isn't. My phosphorus is very high and that is effecting my calcium levels. If I understood him correctly, phosphorus binds with calcium, which would explain why even if when I do have normal calcium levels I am neurologically appearing to be hypocalcemic.
The problem is, Renagel is expensive. Insurance usually only covers it for end stage kidney disease patients on dialysis. Thank God, I am not. What they don't understand is how yucky it feels to by hypo or hypercalcemic and how much it is effecting my life. My PCP and nephrologist are fighting for it. It costs about the same as two trips to the ER for IV calcium a month and could potentially eliminate the need for the trips. Maybe we will get it covered. Maybe not. I want the numbness, tingling, muscle spasms and fatigue gone and think it is worth a try.
One piece of good news is, we have given up on the low phosphorus part of my diet, so I have more things I can eat. My phosphorus wasn't staying in control with diet. Now I am just on low iodine and enjoying the fact that I have some food choices again. I can eat whole grains, seeds, nuts, chocolate, and drink soda. I am not normally a soda drinker, but I need some caffeine to get me through this week. I am still not allowed to have dairy, egg yolks, sea products (including sea salt, which is most of the salt here, and fish), some beans, red dye, molasses, soy, or potato skins because of the iodine, but that is much more manageable than both diets at once!
After my scans Wednesday, before my oncologist appointment, I plan on having a nice big cup of iced coffee at the mall attached to the hospital. I am not sure if a want a tuna sandwich or a home made pizza for lunch, but what ever it will be will be high in iodine. :)
Tomorrow is the first part of my Uptake Scan. I am a little worried. The scan is just of my neck (though we know there may be more distant metastasis) and will determine the dose for my radioactive iodine (RAI) in August and whether I need more surgery before the RAI. Any nodes that show up in my neck on the scan will have to be surgically removed. The RAI is only effective on the traces left behind, not actual tumors.
My surgeon is a wonderful man, was very thorough and took out almost a hundred lymph nodes three tumors and my whole thyroid, but what he did was only a unilateral neck dissection because the ultrasound on the left half of my neck looked okay. I hope it was the right choice. I can't imagine going through the surgery all over again. Knowing how hard the surgery is and how hard the recovery is will make the anticipation that much worse. It would be much better not to have to do it.
Calcium yesterday 8.9 (normal 8.6-10.2) up from 7.8 last Wednesday. We are still sticking with 0.5 of the alpha D3 twice a day. I feel hypocalcemic, though nothing like I did last week when I was ready to crawl out of my skin. The numbness and tingling are there, but can be changed by shifting weight and pressure points, not holding the phone for too long, etc. The cramping in happening but not waking me up at night. I am definitely feeling better in that regards.
TSH was down to 11.14 on my labs from last Wednesday!! It is still a far cry from our goal of .01-.02 (normal is 0.03-3, but due to the cancer they like to keep the thyroid stimulating hormone (TSH) suppressed so it doesn't stimulate cancerous thyroid cells to grow) but it is much much better than the numbers in the 30s and 50s we have been getting until now. I have heard that as long as the TSH is high the fatigue is the same, no matter how high, but I am not sure that is true for me. I certainly was feeling much much less hypothyroid until the Thyrogen shot yesterday.
My Thyroglobulin is up from 9.0 to 11.2. Goal on that is zero. The RAI will hopefully take care of that. Under 2 unsuppressed is usually just a watch and wait scenario. Considering those are suppressed numbers, which should be lower, right now it is clear that either more surgery or hopefully just the RAI is needed. Hopefully my unsuppressed labs tomorrow won't have higher numbers.
Sorry, if you are listening in and I am not making sense. I don't have the energy to explain everything properly and get it all down as well. Starting this blog months into my journey, when I don't have the time or energy to catch anyone up (I barely have the energy to get through each day), isn't exactly ideal but neither is the situation.
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