My biopsy was almost two weeks ago. Granted there were holidays in the middle, but so were there my first biopsy - and then I had results within a week. Still no results.
I am surprisingly calm.
I know that no matter what the answers are I am not likely to be happy with them, so I am happy not to be dealing with them. The two options I was given were a new tumor or a congenital (from birth) cyst.
New tumor - not happy for obvious reasons.
Congenital cyst - usually they are surgically removed, which with all of my scar tissue isn't likely a good option, and how did they miss it through four years of ultrasounds, MRIs, CT scans and two neck dissections!! It just doesn't make sense. I will have a lot of questions about how it could have happened.
It is the better option by far, but still not a happy one. How could it happen? What do we do?
I am praying they come up with a good good answer, one which makes sense. I may be looking for miracles, but I think it is time for one.
Thursday, March 7, 2013
Wednesday, February 20, 2013
Sick today, biopsy tomorrow
I have the flu. High fever, aches, cough, it hurts to breathe. It is a good distraction from worry at least! I don't have the energy for much at all. I could sleep all day if I didn't have kids to take care of. I saw my doctor, she said not to delay the biopsy, it needs to happen. She did give me a prescription for Tamiflu and I stocked up on zinc, vitamin c and elderberry.
She offered me valium for before the biopsy, said she could never go through such a thing without it, but #1 I am not all that worried about the biopsy itself, and #2 I am driving there and back. I have a box of Valium that I was given after my first surgery, to help with the muscle spasms in my neck, and I never even opened it. I am not such a medication person. It is nice to know it is there, but I like a clear head. I wonder if it expired. Most of my pain medication from after my surgeries did.
I am half resigned to more surgery on my neck. I know, until we get results back it could be benign, but no matter what it is, something growing in my neck needs to leave. Even if it is a cyst, it is pressing on my trachea and causing worry and discomfort. I want it gone. I really really want it gone.
On a better note, my DH is a doll. He has been working hard looking for quick and easy low phosphorus foods for me. He let me sleep this afternoon until he had to go to work. For lunch, he made eggs and toast for himself and the kids and he cleaned up his cooking mess. While I was sleeping he and the kids cleaned up the living and dining room a bit. The books and magazines are no longer on the couch and they cleaned their stuff off of most of the dining room table. It is amazing how quickly the place can fall apart when the mommy is sick, but with a bit of cooperation, and the promise of a trip with DH if they helped, they were able to pull things back together a bit!
She offered me valium for before the biopsy, said she could never go through such a thing without it, but #1 I am not all that worried about the biopsy itself, and #2 I am driving there and back. I have a box of Valium that I was given after my first surgery, to help with the muscle spasms in my neck, and I never even opened it. I am not such a medication person. It is nice to know it is there, but I like a clear head. I wonder if it expired. Most of my pain medication from after my surgeries did.
I am half resigned to more surgery on my neck. I know, until we get results back it could be benign, but no matter what it is, something growing in my neck needs to leave. Even if it is a cyst, it is pressing on my trachea and causing worry and discomfort. I want it gone. I really really want it gone.
On a better note, my DH is a doll. He has been working hard looking for quick and easy low phosphorus foods for me. He let me sleep this afternoon until he had to go to work. For lunch, he made eggs and toast for himself and the kids and he cleaned up his cooking mess. While I was sleeping he and the kids cleaned up the living and dining room a bit. The books and magazines are no longer on the couch and they cleaned their stuff off of most of the dining room table. It is amazing how quickly the place can fall apart when the mommy is sick, but with a bit of cooperation, and the promise of a trip with DH if they helped, they were able to pull things back together a bit!
Sunday, February 17, 2013
I just should have stayed in bed
Last Thursday was not my day. It started out on the wrong foot when I fell in the tub, got even worse when I stepped on a metal transformer and cut the bottom of my foot and was decidedly bad when my "routine" neck ultrasound went bad. Even going out to brunch with a friend didn't go right. The food was horrible at a restaurant that usually is really nice and they were out of ingredients so they couldn't even remake things.
I have a new mass in my neck. It is right in the area of my two previous neck surgeries, where everything possible was taking out. This new mass is midline, right over my trachea and vocal cords. It may be a cyst, but based on where it is it is totally nerve wracking. It is 11mm, a bit over a cm -almost half an inch. It isn't huge, but it isn't tiny either. There is also what is hopefully is just a small cyst in my parotid (main salivary) gland. This is the same gland that my brother had cancer in just a couple years back. What ever it is it wasn't there the last scan. Now it is 4x6mm. Still small, but not tiny.
I am scheduled for a biopsy on the bigger mass Thursday IY"H. The smaller one is too hard to get to, so we will be watching it and praying for the best.
Thursday is Teinis Esther, a fast day. It is also the anniversary of my first neck biopsy four years ago.
This week we are doing Thyrogen injections and blood tests to check to see what my tumor blood markers are. The last time I had a recurrence they didn't go up, so good results won't be very reassuring, but high numbers would certainly be telling.
And I am wishing that I could turn the clock back and have stayed in bed last Thursday.
I have a new mass in my neck. It is right in the area of my two previous neck surgeries, where everything possible was taking out. This new mass is midline, right over my trachea and vocal cords. It may be a cyst, but based on where it is it is totally nerve wracking. It is 11mm, a bit over a cm -almost half an inch. It isn't huge, but it isn't tiny either. There is also what is hopefully is just a small cyst in my parotid (main salivary) gland. This is the same gland that my brother had cancer in just a couple years back. What ever it is it wasn't there the last scan. Now it is 4x6mm. Still small, but not tiny.
I am scheduled for a biopsy on the bigger mass Thursday IY"H. The smaller one is too hard to get to, so we will be watching it and praying for the best.
Thursday is Teinis Esther, a fast day. It is also the anniversary of my first neck biopsy four years ago.
This week we are doing Thyrogen injections and blood tests to check to see what my tumor blood markers are. The last time I had a recurrence they didn't go up, so good results won't be very reassuring, but high numbers would certainly be telling.
And I am wishing that I could turn the clock back and have stayed in bed last Thursday.
Wednesday, February 13, 2013
Getting serious about phosphorus
My blood work has been really off lately. Phosphorus blood levels should be between 2-4.5 and mine are never there. Usually they hover around 5 and we just ignore them. This week they have been well over 6 - in a range that is really dangerous for my kidneys.
Without parathyroid hormone the phosphorus I eat gets absorbed by my gut but my kidneys don't get the message to excrete it so it builds up and up. The only way to keep the blood levels safe is just not to eat more phosphorus than necessary.
The kicker is, it is in everything except fat and sugar. LOL Whole grains have the most, dairy is horribly full of it, chocolate is high in phosphorus as are oatmeal and seeds and nuts. 100 grams of wheat germ has well over 1,000mg of phosphorus - not that you eat it in that quantity, but wow!
I have tried low phosphorus diets before, and never could get my blood levels normal even when I was good about it, but I need to do it again.
The goal is less than 800mg of phosphorus a day. A cup of milk has 232mg, a cucumber 42mg, a potato 44mg, a package of instant oatmeal 143 and a cup of dark meat chicken 302mg a banana 26mg, a carrot 21mg and we are over 800! It all ads up fast, even without wheat germ involved.
Right now the goal is to find low phosphorus foods so I am not over 800mg or hungry by the middle of the day, having used up my allowance.
Some foods, like eggs, change phosphorus content depending on how they are cooked. Fried eggs have more phosphorus than boiled eggs which have more phosphorus than baked eggs, so the sum of the parts isn't even equal to the ingredients nutritional information. Pickles have less phosphorus than cucumbers (25 for pickles, vs 42 for cucumbers) and I can't for the life of me figure out the phosphorus level in a piece of potato kuggel.
Good news is, brie cheese is pretty low in phosphorus at 53mg per ounce, vs 143mg per ounce for cheddar cheese. Cream of wheat only has 19mg of phosphorus per package, so if I can find any here in this country it will be one of my quick and easy safe foods and oranges are also pretty safe at about 15mg of phosphorus each. B"H it is orange season now.
Without parathyroid hormone the phosphorus I eat gets absorbed by my gut but my kidneys don't get the message to excrete it so it builds up and up. The only way to keep the blood levels safe is just not to eat more phosphorus than necessary.
The kicker is, it is in everything except fat and sugar. LOL Whole grains have the most, dairy is horribly full of it, chocolate is high in phosphorus as are oatmeal and seeds and nuts. 100 grams of wheat germ has well over 1,000mg of phosphorus - not that you eat it in that quantity, but wow!
I have tried low phosphorus diets before, and never could get my blood levels normal even when I was good about it, but I need to do it again.
The goal is less than 800mg of phosphorus a day. A cup of milk has 232mg, a cucumber 42mg, a potato 44mg, a package of instant oatmeal 143 and a cup of dark meat chicken 302mg a banana 26mg, a carrot 21mg and we are over 800! It all ads up fast, even without wheat germ involved.
Right now the goal is to find low phosphorus foods so I am not over 800mg or hungry by the middle of the day, having used up my allowance.
Some foods, like eggs, change phosphorus content depending on how they are cooked. Fried eggs have more phosphorus than boiled eggs which have more phosphorus than baked eggs, so the sum of the parts isn't even equal to the ingredients nutritional information. Pickles have less phosphorus than cucumbers (25 for pickles, vs 42 for cucumbers) and I can't for the life of me figure out the phosphorus level in a piece of potato kuggel.
Good news is, brie cheese is pretty low in phosphorus at 53mg per ounce, vs 143mg per ounce for cheddar cheese. Cream of wheat only has 19mg of phosphorus per package, so if I can find any here in this country it will be one of my quick and easy safe foods and oranges are also pretty safe at about 15mg of phosphorus each. B"H it is orange season now.
Friday, August 24, 2012
The vanilla is gone!!
Before I got sick, which is starting to feel like a lifetime ago, I went through 2-3 liters of vanilla a year. When I got sick that changed pretty abruptly. I had the same open one liter bottle for the last three years. It was half full a few months ago, and now it is gone.
The kids and I did a lot of baking this summer. They are now great helpers, able to follow recipes and happy to clean up, and I am having more good days when I can work with them in the kitchen.
We have 101 new cookie cutters, a bunch of good (some very messy!) recipes and a lot of good memories. They are learning life skills and I am learning to let go and give them the chance to play, learn, make mistakes, make wonderful creations - and clean up.
I just opened up a new one liter bottle of vanilla and am curious how long it will take to finish.
I also think it is finally time to replace my mint extract. I bought it in bulk during the good old days when it didn't seem to last a wink, and it sat so long that it isn't good any more. I am sure the children would enjoy being able to expand their recipe repertoire and I would love some chocolate mint brownies.
The kids and I did a lot of baking this summer. They are now great helpers, able to follow recipes and happy to clean up, and I am having more good days when I can work with them in the kitchen.
We have 101 new cookie cutters, a bunch of good (some very messy!) recipes and a lot of good memories. They are learning life skills and I am learning to let go and give them the chance to play, learn, make mistakes, make wonderful creations - and clean up.
I just opened up a new one liter bottle of vanilla and am curious how long it will take to finish.
I also think it is finally time to replace my mint extract. I bought it in bulk during the good old days when it didn't seem to last a wink, and it sat so long that it isn't good any more. I am sure the children would enjoy being able to expand their recipe repertoire and I would love some chocolate mint brownies.
Thursday, August 9, 2012
Procrastination pays off!!
I have a whole bunch of blood tests that I need done. Very few of them could be done through the local clinic. Most of them had to be done at the hospital, and not just one hospital but two hospitals because each one only does some of them.
I had approval for the tests at one hospital (SZ) and was waiting on the approval for the ones at the other hospital (EK) since Monday.
I was near the first hospital Wednesday (SZ) and decided to go on the wild goose chase trying to figure out where to go to get the tests done and what I was going to need to do. I found the office of the secretary at 1:03pm but of course it had closed at 1pm. I managed to find the lab manager who sent me to a different lab and in the end I found out the rules. The lab is open for draws between 8am and 9:50am Sunday-Thursday, the secretary is there until 1pm (exactly!) to answer questions and hopefully get test results eventually.
I decided yesterday and I was going to go today and do the tests, but this morning I was just too tired.
This afternoon I got approval for most of the tests at EK. One wasn't approved and when the doctor checked into why it was causing the problems we found out was because it had been incorrectly entered for the wrong hospital. The test is actually only done in SZ.
If I had gone to SZ this morning I would have had to go back next week anyway.
Now I have to figure out where to go in EK and if it is physically possible to go to both hospitals in one morning within the hours that the labs are open for outpatient blood tests.
It is worth a try!!
I had approval for the tests at one hospital (SZ) and was waiting on the approval for the ones at the other hospital (EK) since Monday.
I was near the first hospital Wednesday (SZ) and decided to go on the wild goose chase trying to figure out where to go to get the tests done and what I was going to need to do. I found the office of the secretary at 1:03pm but of course it had closed at 1pm. I managed to find the lab manager who sent me to a different lab and in the end I found out the rules. The lab is open for draws between 8am and 9:50am Sunday-Thursday, the secretary is there until 1pm (exactly!) to answer questions and hopefully get test results eventually.
I decided yesterday and I was going to go today and do the tests, but this morning I was just too tired.
This afternoon I got approval for most of the tests at EK. One wasn't approved and when the doctor checked into why it was causing the problems we found out was because it had been incorrectly entered for the wrong hospital. The test is actually only done in SZ.
If I had gone to SZ this morning I would have had to go back next week anyway.
Now I have to figure out where to go in EK and if it is physically possible to go to both hospitals in one morning within the hours that the labs are open for outpatient blood tests.
It is worth a try!!
Thursday, August 2, 2012
Summer is a splash
My kids may turn into fish before summer is over. I need to find a way to get the sand out of the bottom of the pool though. The filter just isn't cutting it. We keep having sand storms and the bottom of the pool is taking the brunt of it. I can't keep my car clean either. It is just part of living in a desert country.
I have another consultation in the hospital I prefer to avoid on Sunday. I am sure it will be fine, I am actually less anxious this time than I was last time, but then again it is only Thursday.
My calcium levels are low now, but I am not so miserable with low calcium symptoms unless I do too much B"H. By evening I am a bit tingly and twitchy just from getting through the day, and I know my levels are low without blood tests, though I am a good patient and do them none the less since the doctors like to see numbers.
I am back to baking a bit. I forgot how easy it is even with my limited energy, especially with my new flour sifter! I sift three kilo (6.6lbs) of flour at once and keep it in a big bag in the freezer for easy baking. Jam squares take minutes to get into the oven and brownies are just as quick and easy. Swimming makes the kids hungry and their friends don't mind a treat either. Plus, I can sneak in whole wheat flour and pretend it is healthy.
It is nice having everyone home, though I am sure by the time summer vacation is over I will be more than ready to send them back. I still have to wash and iron all of their new uniform shirts, buy all of their school supplies and cover their books. Maybe this is the year I will manage to teach them to cover books. Any which way I am glad we have plenty of time to get it all done without pressure! Relaxed summers with happy kids are a real blessing.
I have another consultation in the hospital I prefer to avoid on Sunday. I am sure it will be fine, I am actually less anxious this time than I was last time, but then again it is only Thursday.
My calcium levels are low now, but I am not so miserable with low calcium symptoms unless I do too much B"H. By evening I am a bit tingly and twitchy just from getting through the day, and I know my levels are low without blood tests, though I am a good patient and do them none the less since the doctors like to see numbers.
I am back to baking a bit. I forgot how easy it is even with my limited energy, especially with my new flour sifter! I sift three kilo (6.6lbs) of flour at once and keep it in a big bag in the freezer for easy baking. Jam squares take minutes to get into the oven and brownies are just as quick and easy. Swimming makes the kids hungry and their friends don't mind a treat either. Plus, I can sneak in whole wheat flour and pretend it is healthy.
It is nice having everyone home, though I am sure by the time summer vacation is over I will be more than ready to send them back. I still have to wash and iron all of their new uniform shirts, buy all of their school supplies and cover their books. Maybe this is the year I will manage to teach them to cover books. Any which way I am glad we have plenty of time to get it all done without pressure! Relaxed summers with happy kids are a real blessing.
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