I had a really really hard week.
I ended up getting IV four times, blood tests seven, and feeling horrible all week. Muscle cramps, heart palpitations, numbness, tingling, and just being grumpy despite trying to smile.
Tuesday was a holiday so my doctor's office closed at 1pm. Blood tests didn't get back until 12:50pm, so my doctor couldn't do IV in the office. Instead I got referrals to urgent care and the ER and was told to choose where to go.
I went to urgent care, where they were very nice. They put in the IV catheter, took blood tests, did an ekg, and once they saw how low my calcium was they sent me to the ER. The doctor in the ER was a sweetie. They did more blood tests, another EKG, started the calcium IV, then got blood test results and when they saw how low I was they wanted to admit me (I was down to 6.9, with under 7 being panic low levels, doctors getting paged and normally an automatic admit). The doctor was impressed with how much I knew about my condition, so she agreed to call the endocrinologist on call and ask her what to do. The endo agreed that if I would follow up at home, with how high my phosphorus was they would be wary of putting me on continuous infusions of calcium anyway, so they let me go home.
While I was there the ER doctor had fun using me at a teaching tool. With my permission she had the residents and interns in to tap my cheek and see my twitch and to grill them on the signs and risks of hypocalcemia.
I ended up putting an SOS out to family on Friday because I couldn't do the cooking for Shabbos, DH was working and the kids couldn't do it all. My brother in law came, helped get things finished up B"H. He stayed and even washed my dishes after Shabbos. Thank God for good family.
My doctor keeps telling me I need to stop pushing myself and using my calcium up, but that is easier said than done. She is also distressed over my lack of veins. The ones that used to be reliable just aren't any more. It is taking multiple tries from the pediatrician to find a vein at this point, not one else will even try anymore. She asked my surgeon about placing a port when he does my surgery in October. My surgeon hasn't said yes or no, and I am not sure what to think about it. It seems like a bit step and I am not sure what that means about doing blood tests and IVs locally. I need to find out if the port will mean I have to go to the hospital for them.
All in all, I am having trouble posting since my brain is still in a low calcium fog and I am just not feeling well.
It was a really long hard week and I am hoping the week to come will be better, but I am not really sure.
Saturday, July 20, 2013
Sunday, July 14, 2013
Two more biopsies, no more answers
Since my last post I had had two more biopsies and no real answers.
My surgeon wants the central neck mass removed though he agrees it is likely a cyst and likely benign. It is affecting my swallowing and may be a thyroductal cyst, which can contain thyroid cells, never a good idea with a history like mine.
I have a CT schedule in a couple weeks.
Surgery is scheduled IY"H for October. I asked if we could wait until the children are back in school and my surgeon thought that was fine. The only "problem" is he booked me for 6pm. Since DH has to be with me, I can't see that working. 6pm likely means 8 pm which means children home at bedtime without news on how I am, without me, without their father, worried.
No.
I asked for an earlier time and hopefully it will be changed.
The surgery will require a new incision, a new scar on my already scarry neck. I am not sure why one more scar bothers me, but it really does. I am starting to feel like Frankenstein. I am sure no one else will notice though. My current scars have already faded and aren't terribly noticeable, but I am anxious about a new one none the less.
It will also mean 3-4 days inpatient. 3-4 days away from my kids. I will again have an incision on my neck, a drain to deal with, nurses giving me my medication when it is best for them, not for me, a bathroom I have to share and pain to bear.
I haven't told my mother yet. I am not sure if/when I will. Most of my friends don't know either.
I don't want to deal with other people's worry. I don't want their anxiety creeping in. I don't want to reassure them right now.
I know this is nothing compared to what I have been through in the past, but I know what I have been through in the past and don't want anything even remotely like it again.
My surgeon wants the central neck mass removed though he agrees it is likely a cyst and likely benign. It is affecting my swallowing and may be a thyroductal cyst, which can contain thyroid cells, never a good idea with a history like mine.
I have a CT schedule in a couple weeks.
Surgery is scheduled IY"H for October. I asked if we could wait until the children are back in school and my surgeon thought that was fine. The only "problem" is he booked me for 6pm. Since DH has to be with me, I can't see that working. 6pm likely means 8 pm which means children home at bedtime without news on how I am, without me, without their father, worried.
No.
I asked for an earlier time and hopefully it will be changed.
The surgery will require a new incision, a new scar on my already scarry neck. I am not sure why one more scar bothers me, but it really does. I am starting to feel like Frankenstein. I am sure no one else will notice though. My current scars have already faded and aren't terribly noticeable, but I am anxious about a new one none the less.
It will also mean 3-4 days inpatient. 3-4 days away from my kids. I will again have an incision on my neck, a drain to deal with, nurses giving me my medication when it is best for them, not for me, a bathroom I have to share and pain to bear.
I haven't told my mother yet. I am not sure if/when I will. Most of my friends don't know either.
I don't want to deal with other people's worry. I don't want their anxiety creeping in. I don't want to reassure them right now.
I know this is nothing compared to what I have been through in the past, but I know what I have been through in the past and don't want anything even remotely like it again.
Thursday, March 7, 2013
Waiting patiently
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.
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.
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.
Subscribe to:
Comments (Atom)
