It stormed outside as we sat as a family by our table, eating, singing, chatting and enjoying the warmth in juxtaposition to the cold outside. The meal wore down, the kids started to go to sleep and the storm grew even more fierce. Then the lights went out. The fuse blew and we had the quietest Shabbos we have experienced in a long time.
It is incredible how quite the house is without the fridge, the freezer, the oxygen concentrator or the lights. My son's feeding pump, which B"H has a battery, seemed loud, but the silence was even louder.
It was a Shabbos of cold food, snuggles under blankets (we learned our gas heat needs electricity!) and quiet. Since we are heading into the holiday of Purim, which is anything but quiet it was perfect. Just was God ordered.
After Shabbos I baked my last batch of bagels to give out to friends and neighbors in the morning and will be packaging Mishloach Manos tonight.
We had a group of women over for my husbands Megilas Esther (Scroll of Esther) leining (reading) tonight and the holiday has begun!
I feel light and free and am enjoying having cancer on the back back burner. It isn't in my face like it was all week. Knowing that there are no lab results to check for and having family time with lots to do is a very welcome change. Family, friends, kids in costume, and good food are even more appreciate than usual.
Saturday, February 27, 2010
Friday, February 26, 2010
and waiting some more.
It seems that there won't be any results today. Our Sabbath is tonight and most things are closed by now. There have been no updates. Sunday and Monday are holidays, so I doubt that there will be any results before Tuesday.
I am glad that I have a fun and distracting morning planned on Tuesday. I will be out beading and laughing with a good friend.
Now I just need to keep smiling and praying and enjoy the time with my kids, their costumes, good food and good friends.
Great news, it has been raining or pouring since my last post! It is the kind of rain we need. It is the kind of rain that soaks the ground (and the people) and God willing will continue and tide us over until the rains next winter. There have been long periods of time that the rain was coming down so hard that we couldn't see anything out the windows and a bit of hail as well.
Blessings are raining down on our country in proportions that I haven't seen in a while. Rain is a sign of good tidings and I am ready for them.
I am glad that I have a fun and distracting morning planned on Tuesday. I will be out beading and laughing with a good friend.
Now I just need to keep smiling and praying and enjoy the time with my kids, their costumes, good food and good friends.
Great news, it has been raining or pouring since my last post! It is the kind of rain we need. It is the kind of rain that soaks the ground (and the people) and God willing will continue and tide us over until the rains next winter. There have been long periods of time that the rain was coming down so hard that we couldn't see anything out the windows and a bit of hail as well.
Blessings are raining down on our country in proportions that I haven't seen in a while. Rain is a sign of good tidings and I am ready for them.
Thursday, February 25, 2010
Waiting Praying Thinking Planning Praying Waiting
Today, the fast of Esther, is the first anniversary of my biopsy and cancer diagnosis.
I had my blood work from the fifth day in my Thyrogen stimulated blood test series drawn this morning.
The results aren't likely to change anything. The probability that my thyroglobulin level went down is pretty much non existent. The probability that it went up is high.
But today I pray. I wait. I pray. I look back over last year and my assertions that I would not let them do another major neck surgery on me. On the one hand am glad I said bli nedder (that I wasn't making a vow) and on the other hand I remember why. I am waiting for my miracle. Let the numbers go down. Let the last set of labs be an error. Please. I beg. I cry. I laugh. I smile. God can do anything.
I have learned from my previous experiences and if, God forbid, we have to go ahead with surgery, we will have to have a post op pain plan in hand before surgery. An electric adjustable bed for the time in the hospital after surgery is imperative. I will not be afraid of addiction from taking my pain medication as needed post op.
What ever I am to do I will do.
As I am typing it has just stated to rain. Rain in Israel is a powerful thing. It is a sign of blessing. It is a gift. It is clearly our life blood and directly sustains us.
I don't expect test results until tomorrow noon at the soonest. That gives us a lot of time for rain, prayer and it means I will be here, online refreshing my computer screen, waiting for the results to come in, and trying to smile despite the worry.
Prayers for me; Chaya Liba bas Sorah, that my miracle comes. That this year my news is better than last year. Please pray for rain, lots of rain.
I had my blood work from the fifth day in my Thyrogen stimulated blood test series drawn this morning.
The results aren't likely to change anything. The probability that my thyroglobulin level went down is pretty much non existent. The probability that it went up is high.
But today I pray. I wait. I pray. I look back over last year and my assertions that I would not let them do another major neck surgery on me. On the one hand am glad I said bli nedder (that I wasn't making a vow) and on the other hand I remember why. I am waiting for my miracle. Let the numbers go down. Let the last set of labs be an error. Please. I beg. I cry. I laugh. I smile. God can do anything.
I have learned from my previous experiences and if, God forbid, we have to go ahead with surgery, we will have to have a post op pain plan in hand before surgery. An electric adjustable bed for the time in the hospital after surgery is imperative. I will not be afraid of addiction from taking my pain medication as needed post op.
What ever I am to do I will do.
As I am typing it has just stated to rain. Rain in Israel is a powerful thing. It is a sign of blessing. It is a gift. It is clearly our life blood and directly sustains us.
I don't expect test results until tomorrow noon at the soonest. That gives us a lot of time for rain, prayer and it means I will be here, online refreshing my computer screen, waiting for the results to come in, and trying to smile despite the worry.
Prayers for me; Chaya Liba bas Sorah, that my miracle comes. That this year my news is better than last year. Please pray for rain, lots of rain.
Wednesday, February 24, 2010
The girls are home. B"H They are the best therapy.
I already feel a lot more positive.
We have laughed, cuddled and joked around and I am definitely smiling again. Tackling and tickling small children and hugging and squeezing them all was exactly what I needed.
Another hour and a half and my son should IY"H arrive and I am planning on some cuddles with him as soon as possible.
B"H life goes on. One minute at a time all is well.
We have laughed, cuddled and joked around and I am definitely smiling again. Tackling and tickling small children and hugging and squeezing them all was exactly what I needed.
Another hour and a half and my son should IY"H arrive and I am planning on some cuddles with him as soon as possible.
B"H life goes on. One minute at a time all is well.
We Inturrupt Your Day To Announce
that another big surgery and more RAI seem to be the reality of my near future.
My day three thyroglobulin is over the cutoff my oncologist gave me for treatment, and that was for day five numbers, which statistically should be even higher.
It is all God's plans, but that doesn't mean I have to be happy, especially right away. I am glad the children weren't home when I got the news.
I hope that it is really nothing and the oncologist changes her mind when she sees the numbers. I pray that the first shot being done subq instead of IM (it wasn't my favorite nurse that day) shot my numbers up faster and they will drop by Thursday.
Miracles can still happen.
The mass that they want to remove is between my trachea and carotid artery so it would be a very risky surgery.
Prayers, both that the numbers look better Wednesday and that I can continue smiling and laughing through all of this would be appreciated. I am so numb, scared and sad right now.
My day three thyroglobulin is over the cutoff my oncologist gave me for treatment, and that was for day five numbers, which statistically should be even higher.
It is all God's plans, but that doesn't mean I have to be happy, especially right away. I am glad the children weren't home when I got the news.
I hope that it is really nothing and the oncologist changes her mind when she sees the numbers. I pray that the first shot being done subq instead of IM (it wasn't my favorite nurse that day) shot my numbers up faster and they will drop by Thursday.
Miracles can still happen.
The mass that they want to remove is between my trachea and carotid artery so it would be a very risky surgery.
Prayers, both that the numbers look better Wednesday and that I can continue smiling and laughing through all of this would be appreciated. I am so numb, scared and sad right now.
Hired!
I went for my blood work this morning. My favorite nurse was taking care of me. Since I had a stack of lab slips I was helping her figure out which vials she needed for the draw. It is all old hat by now, some of these labs we have been doing multiple times a week for almost a year, so I know which colors vials go with which lab and how many labs can be drawn on one tube.
After she finished the draw she said to me, "Liba, we are looking for another nurse. You would be perfect. You already know what is done here, where everything is and wouldn't need any training. You are so patient and kind and I think it would be a great fit. Are you sure you don't want a job?"
B"H She had other patients to attend to after me, because I was doing my best not to laugh. I will admit that I am a quick learner, and tall enough to reach things down from the upper cabinets for her when she can't, so I have learned where things are. I did work as a medical secretary for many years and my boss did make me draw her blood a couple times, but I am not a nurse, never was a nurse, never had desire to be a nurse and am barely getting through a day, forget taking a job. Between my own medical junk and caring for a medically fragile child I do not need any extra doctor, hospital or health related stuff in my life thank.you.very.much.but.no.
It is nice to know she thinks that highly of me, but no thanks, I think I will have to pass on that one!
Now if the beading store was hiring... that might be worth considering. The only problem is I would never get a paycheck, just lots of beads. The girls supply was replenished today and I went to another beading class over an hour late because there was too much in the store to look at. We figured we needed an hour there, but two wasn't even enough.
Because I was less numb today (I had good calcium and pretty good phosphorus levels for the first time in ages!) I managed to do the beading and crocheting at the class today!! I was late so I didn't have time to finish in class but I managed to complete it at home. I didn't want to miss the chance and end up too numb to do it next week.
I haven't had this much feeling in my hands since I was off of my medication for the RAI.
I think I still prefer just beads on a string to the crocheted look, but it is pretty and an accomplishment! I am proud.
After she finished the draw she said to me, "Liba, we are looking for another nurse. You would be perfect. You already know what is done here, where everything is and wouldn't need any training. You are so patient and kind and I think it would be a great fit. Are you sure you don't want a job?"
B"H She had other patients to attend to after me, because I was doing my best not to laugh. I will admit that I am a quick learner, and tall enough to reach things down from the upper cabinets for her when she can't, so I have learned where things are. I did work as a medical secretary for many years and my boss did make me draw her blood a couple times, but I am not a nurse, never was a nurse, never had desire to be a nurse and am barely getting through a day, forget taking a job. Between my own medical junk and caring for a medically fragile child I do not need any extra doctor, hospital or health related stuff in my life thank.you.very.much.but.no.
It is nice to know she thinks that highly of me, but no thanks, I think I will have to pass on that one!
Now if the beading store was hiring... that might be worth considering. The only problem is I would never get a paycheck, just lots of beads. The girls supply was replenished today and I went to another beading class over an hour late because there was too much in the store to look at. We figured we needed an hour there, but two wasn't even enough.
Because I was less numb today (I had good calcium and pretty good phosphorus levels for the first time in ages!) I managed to do the beading and crocheting at the class today!! I was late so I didn't have time to finish in class but I managed to complete it at home. I didn't want to miss the chance and end up too numb to do it next week.
I haven't had this much feeling in my hands since I was off of my medication for the RAI.
I think I still prefer just beads on a string to the crocheted look, but it is pretty and an accomplishment! I am proud.
Monday, February 22, 2010
It was a great day!
My day started out with the second shot, then I came home for some phone calls and a nap, which was followed by a nice day with the kids making bagels and ended with a short time at a good friend's son's wedding.
I felt good today. Someone suggested it was the shots, and it is possible. The shots temporarily increase my TSH (thyroid stimulating hormone) and my calcium levels have been better in the past when my TSH was higher. Tomorrows labs should be interesting!
I felt good today. Someone suggested it was the shots, and it is possible. The shots temporarily increase my TSH (thyroid stimulating hormone) and my calcium levels have been better in the past when my TSH was higher. Tomorrows labs should be interesting!
Sunday, February 21, 2010
What do mah jongg solitaire, tehilim (psalms) and long chats on the phone have in common?
They are what I do when stress hits.
Escape, prayers and emotional support.
I guess it works.
I had my first Thyrogen shot this morning. My copay was 2.39% which I found funny. Generally the copays are 15% or 13nis depending on the tier of coverage. My copay on the two injections was 260NIS or $70. Considering the full price (and the fact that most people have trouble getting it covered to begin with) I wasn't complaining about my portion!
Escape, prayers and emotional support.
I guess it works.
I had my first Thyrogen shot this morning. My copay was 2.39% which I found funny. Generally the copays are 15% or 13nis depending on the tier of coverage. My copay on the two injections was 260NIS or $70. Considering the full price (and the fact that most people have trouble getting it covered to begin with) I wasn't complaining about my portion!
Saturday, February 20, 2010
Prayers for a beautiful new week.
I have a full week ahead and my little boy, who is prone to pneumonia, is coughing.
In terms of Purim preparations I have bagels to boil and bake, cream cheese to make, paper goods and bags of chocolate milk to buy, notes to write, packages to prepare, and costumes to finish before Wednesday.
Besides that I have injections scheduled for Sunday and Monday, blood work for Sunday, Tuesday and Thursday, a trip to the bead store on Tuesday and a beading work shop and massage after that.
Thursday is a year from my initial cancer diagnosis. Thursday or Friday I should have blood test results from my stimulated thyroglogbulin blood tests, telling me that probability that these new growths are cancerous.
Pre-cancer this would have been a normal week. Now it is an emotional roller coaster, a cause for a lot of prayer and more than I should be trying to do.
Prayers for my son Avraham Chaim Leib ben Chaya Liba and me, Chaya Liba bas Sorah, would be appreciated. My son's cough should go away and not become something more and I should have good test results and the energy to do everything I need to do.
Thank you!
In terms of Purim preparations I have bagels to boil and bake, cream cheese to make, paper goods and bags of chocolate milk to buy, notes to write, packages to prepare, and costumes to finish before Wednesday.
Besides that I have injections scheduled for Sunday and Monday, blood work for Sunday, Tuesday and Thursday, a trip to the bead store on Tuesday and a beading work shop and massage after that.
Thursday is a year from my initial cancer diagnosis. Thursday or Friday I should have blood test results from my stimulated thyroglogbulin blood tests, telling me that probability that these new growths are cancerous.
Pre-cancer this would have been a normal week. Now it is an emotional roller coaster, a cause for a lot of prayer and more than I should be trying to do.
Prayers for my son Avraham Chaim Leib ben Chaya Liba and me, Chaya Liba bas Sorah, would be appreciated. My son's cough should go away and not become something more and I should have good test results and the energy to do everything I need to do.
Thank you!
Friday, February 19, 2010
I slept and slept well!!
B"H I needed that!!
I had 11 hours of only minimally interrupted sleep. Pure bliss. I was up a couple times for my son's feeding pump alarms and to say goodbye to the children in the morning but had no problems falling back to sleep each time.
Sleeping, like eating, makes the swelling a lot worse, but it was worth it. I have some energy to tackle my Shabbos preparations and am looking forward to it.
After many joyous days of beading, all of the beads must be put away for Shabbos and swept up from the floor. The girls were so busy with the beads that they barely played with anything else or made any other messes. I look forward to buying them more beads next week. ;) I love seeing their creations and joy over each and every one. My oldest is making necklaces to put in with the food treats for her friend's mishloach manos, so she will be beading for at least a couple more days.
The littles are bathed and dressed in their Shabbos finery, the oldest of my children is in the bath now (and old enough to bathe and dress herself) and I look forward to a relaxing Shabbos. My husband bought me lots of good reading material and a friend sent me Nutty Chews and I am looking forward to lots of of cuddles from my children. Good food, a clean house, singing and family time are always a great way to end the week.
I had 11 hours of only minimally interrupted sleep. Pure bliss. I was up a couple times for my son's feeding pump alarms and to say goodbye to the children in the morning but had no problems falling back to sleep each time.
Sleeping, like eating, makes the swelling a lot worse, but it was worth it. I have some energy to tackle my Shabbos preparations and am looking forward to it.
After many joyous days of beading, all of the beads must be put away for Shabbos and swept up from the floor. The girls were so busy with the beads that they barely played with anything else or made any other messes. I look forward to buying them more beads next week. ;) I love seeing their creations and joy over each and every one. My oldest is making necklaces to put in with the food treats for her friend's mishloach manos, so she will be beading for at least a couple more days.
The littles are bathed and dressed in their Shabbos finery, the oldest of my children is in the bath now (and old enough to bathe and dress herself) and I look forward to a relaxing Shabbos. My husband bought me lots of good reading material and a friend sent me Nutty Chews and I am looking forward to lots of of cuddles from my children. Good food, a clean house, singing and family time are always a great way to end the week.
Thursday, February 18, 2010
Now isn't that swell
I spoke with my ENT today and he feels that the parotid swelling may be from damage from the radiation. Considering the fact that I swelled up like a chipmunk for the first couple days and had a bit less, but serious swelling for a couple weeks after that, his theory makes sense. That actually was one of my better case scenarios until this conversation. He went on to say that if that was the case that we wouldn't be able to do the RAI again.
RAI is the best tool we have against thyroid cancer.
We are going to throw it out over some salivary glands?
I can live without a couple salivary glands better than I can live with cancer we can't treat, no?
On a better note, I got through my sleep deprived day pretty well B"H! Besides my blood draw this morning, I got dishes washed, the two littles bathed and took care of sending some medical supplies to a friend who was in the midst of a medical crisis with her son.
I also agreed to let my daughter have 20 children over for an hour or so Friday night and to provide them with snack. That should be incentive enough to get her full cooperation preparing for Shabbos tomorrow afternoon.
RAI is the best tool we have against thyroid cancer.
We are going to throw it out over some salivary glands?
I can live without a couple salivary glands better than I can live with cancer we can't treat, no?
On a better note, I got through my sleep deprived day pretty well B"H! Besides my blood draw this morning, I got dishes washed, the two littles bathed and took care of sending some medical supplies to a friend who was in the midst of a medical crisis with her son.
I also agreed to let my daughter have 20 children over for an hour or so Friday night and to provide them with snack. That should be incentive enough to get her full cooperation preparing for Shabbos tomorrow afternoon.
And the insomnia continues
I guess I am supposed to get the most out of today, no wasting my time with mortal matters like sleep. I spent two hours in bed trying to fall asleep to no avail. Now I am moving on to coffee. My husband is working second shift so I have to be awake to take care of the children.
On the medical front, my doctors are trying to figure out if we should push off my stimulated testing next week because of a swollen gland. Right now the right side of my face is very swollen and my amylase is elevated. It looks (physically and according to my blood tests) like something is going on with my parotid gland, which is one of the larger salivary glands, located right under the ear on either side of the face.
We have been dealing with this for a while, just on the other side. About a month ago the left side of my face started swelling and hurting. I also had a bad taste in my mouth when I pressed on the swollen area. My ENT decided that I had an infected parotid gland and put me on antibiotics. The antibiotics didn't make much of a difference that I could tell. Slowly the pain has lessened, though it still peaks on occasion, especially when I try to eat something sour or first thing in the morning, as has as the swelling. Yesterday the right side of my face swelled and hurt, just like the left had, except more so and the left was back to shooting pain as well. The funny part is, there is no bad taste on the swollen right side, but there still is on the not so swollen left side.
My doctors agree that it could be a side effect from the RAI, but it seems odd that it started five months after the RAI. It could be mumps, it is going around our community even in vaccinated individuals who are showing previous immunity in blood tests. It could be an infection. Then there is always the very remote possibility, that my brain won't let go of, that it could be something more sinister.
My brother is in his first week of radiation for parotid cancer.
The probability is low, but I keep on beating the odds, and not in good ways.
As much as I know that God is running the world and that what ever comes my way is for the best, I still worry and my brain doesn't always let go long enough to rest and sleep no matter how tired I am. I lost my father to cancer when I was 16 and I don't want my children to grow up that way as well. If there is something there I want it gone now, early, and to treat it aggressively. I want to be around for my children's graduations, weddings and babies. I don't want any of their simchos tainted with sorrow.
All of this worry over some swollen glands, which I know are most likely benign, it is proof of lack of faith? I fear that almost as much as I fear another cancer diagnosis, and the circle continues.
On the medical front, my doctors are trying to figure out if we should push off my stimulated testing next week because of a swollen gland. Right now the right side of my face is very swollen and my amylase is elevated. It looks (physically and according to my blood tests) like something is going on with my parotid gland, which is one of the larger salivary glands, located right under the ear on either side of the face.
| Amylase | U/L | 511 | normal 28-100 |
We have been dealing with this for a while, just on the other side. About a month ago the left side of my face started swelling and hurting. I also had a bad taste in my mouth when I pressed on the swollen area. My ENT decided that I had an infected parotid gland and put me on antibiotics. The antibiotics didn't make much of a difference that I could tell. Slowly the pain has lessened, though it still peaks on occasion, especially when I try to eat something sour or first thing in the morning, as has as the swelling. Yesterday the right side of my face swelled and hurt, just like the left had, except more so and the left was back to shooting pain as well. The funny part is, there is no bad taste on the swollen right side, but there still is on the not so swollen left side.
My doctors agree that it could be a side effect from the RAI, but it seems odd that it started five months after the RAI. It could be mumps, it is going around our community even in vaccinated individuals who are showing previous immunity in blood tests. It could be an infection. Then there is always the very remote possibility, that my brain won't let go of, that it could be something more sinister.
My brother is in his first week of radiation for parotid cancer.
The probability is low, but I keep on beating the odds, and not in good ways.
As much as I know that God is running the world and that what ever comes my way is for the best, I still worry and my brain doesn't always let go long enough to rest and sleep no matter how tired I am. I lost my father to cancer when I was 16 and I don't want my children to grow up that way as well. If there is something there I want it gone now, early, and to treat it aggressively. I want to be around for my children's graduations, weddings and babies. I don't want any of their simchos tainted with sorrow.
All of this worry over some swollen glands, which I know are most likely benign, it is proof of lack of faith? I fear that almost as much as I fear another cancer diagnosis, and the circle continues.
Insomnia plus exhaustion
does not make for a good day or a good night.
During the day I fall asleep sitting in my chair and at night I can't fall asleep even laying in my bed.
I think I will be looking for melatonin next time I make it to the health food store.
Laying in bed I was having heart palpitations and feeling anxious so I gave up.
The alarm will ring in half an hour, so there is no point in even pretending to sleep any more.
I am off to take my morning meds and smile at everyone as they rush out the door before I follow them. After my labs I hope to come home and sleep a bit so I can be functional by the time the children get home.
It is a good thing that I went to the doctor yesterday evening so my morning is free for sleeping.
During the day I fall asleep sitting in my chair and at night I can't fall asleep even laying in my bed.
I think I will be looking for melatonin next time I make it to the health food store.
Laying in bed I was having heart palpitations and feeling anxious so I gave up.
The alarm will ring in half an hour, so there is no point in even pretending to sleep any more.
I am off to take my morning meds and smile at everyone as they rush out the door before I follow them. After my labs I hope to come home and sleep a bit so I can be functional by the time the children get home.
It is a good thing that I went to the doctor yesterday evening so my morning is free for sleeping.
Wednesday, February 17, 2010
Today is my husband's birthday.
He is a wonderful partner, great man and awesome father.
Our 13th anniversary was just a bit ago.
He has been a huge support through all of my health issues. He is my sounding board, translates my paperwork for me and took over so many of the day to day tasks of the household with a smile on his face. He even filled out my paperwork, got the time off from work, and pushed me out the door to my Beit Natan winter retreat, despite the fact that Avraham Chaim was sick and with me gone my husband would be the only one on duty to deal with his oxygen, medications, and feeding pump for three days.
I am blessed.
Our 13th anniversary was just a bit ago.
He has been a huge support through all of my health issues. He is my sounding board, translates my paperwork for me and took over so many of the day to day tasks of the household with a smile on his face. He even filled out my paperwork, got the time off from work, and pushed me out the door to my Beit Natan winter retreat, despite the fact that Avraham Chaim was sick and with me gone my husband would be the only one on duty to deal with his oxygen, medications, and feeding pump for three days.
I am blessed.
Yawn and stretch
It has been a crazy busy week and I need a day at home today. I don't have energy to both go anywhere and to do anything. It is either or at this point and I have been going all week. My house shows it.
I changed my doctor's appointment from today to tomorrow because even something local is too much. Tomorrow I have to go out for blood work anyway, so I hope to combine the two.
The girls are still busy with their beading, so my house is calm, quiet and major messes aren't being made. It is time to clean up.
My plan for today is washing dishes and making challah. If I can manage I would like to make a batch of bagels for mishloach manos as well. The dishes and challah have to happen though.
We have chessed girls coming (high school girls who volunteer to help) today, so that gives me an hour of somone else helping the girls with their beading while I wash dishes. Normally I would nap, but the house needs my attention badly. The person who normally helps with the dishes and laundry is making a wedding this week, so even though I am overwhelmed and over tired and have Purim preparations on my head I have to do it.
The kids were happy with lunch today, which is great. It was breaded chicken cutlets and pasta, exactly the same thing that was sent yesterday. It is great when meals that they like are repeated.
If I had the energy I would be making an stringy cheesy vegetable lasagna. Don't get me wrong, I am not complaining about what is being sent. I am forever grateful that my family is being taken care of in such an open and loving way and considering the fact that I have one child allergic to dairy, my lasagna isn't an option. I am just not such a meat eater and it hurts to chew today.
I am a bit less worried about my neck today. Things can grow and not be cancer. Worrying won't change anything, just sap energy.
I got my last set of labs back. My TSH is still well suppressed at 0.01 but my calcium is low (8.0, which used to make my terribly sick, now a bit less so).
My salivary glands are quite swollen and hurting a lot today, mostly the right ride. Eating is torture. I may end up going to the doctor today after all.
I changed my doctor's appointment from today to tomorrow because even something local is too much. Tomorrow I have to go out for blood work anyway, so I hope to combine the two.
The girls are still busy with their beading, so my house is calm, quiet and major messes aren't being made. It is time to clean up.
My plan for today is washing dishes and making challah. If I can manage I would like to make a batch of bagels for mishloach manos as well. The dishes and challah have to happen though.
We have chessed girls coming (high school girls who volunteer to help) today, so that gives me an hour of somone else helping the girls with their beading while I wash dishes. Normally I would nap, but the house needs my attention badly. The person who normally helps with the dishes and laundry is making a wedding this week, so even though I am overwhelmed and over tired and have Purim preparations on my head I have to do it.
The kids were happy with lunch today, which is great. It was breaded chicken cutlets and pasta, exactly the same thing that was sent yesterday. It is great when meals that they like are repeated.
If I had the energy I would be making an stringy cheesy vegetable lasagna. Don't get me wrong, I am not complaining about what is being sent. I am forever grateful that my family is being taken care of in such an open and loving way and considering the fact that I have one child allergic to dairy, my lasagna isn't an option. I am just not such a meat eater and it hurts to chew today.
I am a bit less worried about my neck today. Things can grow and not be cancer. Worrying won't change anything, just sap energy.
I got my last set of labs back. My TSH is still well suppressed at 0.01 but my calcium is low (8.0, which used to make my terribly sick, now a bit less so).
My salivary glands are quite swollen and hurting a lot today, mostly the right ride. Eating is torture. I may end up going to the doctor today after all.
Tuesday, February 16, 2010
A whole days of beads
A friend of mine took me to the bead store and to a beading class today. My hands are too numb and my frustration tolerance too low to take up the crocheting they were teaching, but I had fun beading none the less. I brought my beads from my Beit Natan retreat with me, the first time I was introduced to the bead crocheting concept (and failed miserably) and made them into a nice necklace which I am very happy with.
I bought beads for my girls and they were thrilled. They spent the whole afternoon making necklaces and bracelets. The personalities and differences in taste really came out clearly in the creations of my older two. They each have their own style, taste and talent.
The necklace I made myself is on top and the necklaces my 11 year old made me on the bottom
I don't think I am getting up any earlier than 11am tomorrow, except to say goodbye to the kids. I am too tired to move or think straight. My calcium is low (as usual lately) and the muscle cramps make it hard to sleep but I think I will be able to sleep tonight.
Good news! I got the insurance approval for the Thyrogen injections I need for my testing next week. The really great part is, the approval is without limitations. According to the pharmacist the approval doesn't have an end date or a limit on number of times we can use it. That is cause for celebration.
I bought beads for my girls and they were thrilled. They spent the whole afternoon making necklaces and bracelets. The personalities and differences in taste really came out clearly in the creations of my older two. They each have their own style, taste and talent.
All of the necklaces together.
The picture didn't come out terribly well, the individual pictures are better.
(there are also a couple bracelets and a ring, but they are currently being worn)
The necklace I made myself is on top and the necklaces my 11 year old made me on the bottom
The necklaces my 11 year old made herself
The necklace my 9 year old made herself
the necklace my 5 year old made herself
I am exhausted, wiped out and done.I don't think I am getting up any earlier than 11am tomorrow, except to say goodbye to the kids. I am too tired to move or think straight. My calcium is low (as usual lately) and the muscle cramps make it hard to sleep but I think I will be able to sleep tonight.
Good news! I got the insurance approval for the Thyrogen injections I need for my testing next week. The really great part is, the approval is without limitations. According to the pharmacist the approval doesn't have an end date or a limit on number of times we can use it. That is cause for celebration.
Monday, February 15, 2010
I really have no excuse...
I did get a new working computer and I have had plenty to blog about, I just haven't.
I have been updating friends and family a bit, but was having trouble coming back here since it has been so long.
My update from Saturday night:
Which brings me to today.
I am so tired and wiped out as I come down from my adrenaline and caffeine high. Bed time for the kids tonight will have to be on time. I am not sure if I need a laugh, a stiff drink or a cry.
Best of all, stress lowers my calcium levels and I can feel them going down and the tingling and cramping coming. Low calcium also causes anxiety, not something I need any help with right now.
On a great note, I have several weeks of cleaning help right now to help us get ready for Passover. B"H she started today and did most of the attic. For those not in the know, my attic is the kids playroom and the eves up there are our storage space. It has been so deep with toys and lacking in parental supervision over the last year that we couldn't wade through the mess to get to the storage. The kids couldn't play happily and it was an embarrassment.
In three hours, the cleaning help and my 9 year old managed to get it 97% done.
Of course the kids are up there playing again, now that it is fun and I don't have the energy to sit with them and get them to clean up again. I don't even have the energy to trek to the third floor to see what kind of mess they made, so the clean may not last long, but at least I know that it is conquerable, and that they enjoy clean.
Avraham Chaim is calling me, so goodbye.
I have been updating friends and family a bit, but was having trouble coming back here since it has been so long.
My update from Saturday night:
We have unfortunately been having more cancer worries here. I went for another ultrasound and biopsy last Thursday but the worrisome spots are either too deep in my neck or behind my carotid so they couldn't biopsy. The three lymph nodes deep in my neck are very worrisome and not in good places for surgery either and the mass behind my carotid is hypervascular which isn't a good sign.It turns out that Sunday my oncologist was out of the country. Both my endo and my ENT called me Sunday morning (at 9 and 9:22am respectively) to let me know that she was gone but would be back today.
The doctor who did the ultrasound was the one who did my ultrasound and biopsy last year, before my surgery. She is a neck specialist and knows what she is looking at. She wasn't wrong last year, but boy do I hope she is wrong this time.
At this point both my ent, who did my surgery, and endocrinologist have very different game plans. The endo wants to do radiation NOW. The ENT wants more blood tests (stimulated so $$$ injections needed first) and information and says that the radiation isn't likely to take care of cancerous lymph nodes in the neck (which statistically he is correct) and that we need to talk to the oncologist and make a game plan.
In the end both the endo and the ent plan on calling my oncologist tomorrow, so hopefully we will have a plan soon.
On top of all of my worries, my brother starts two months of radiation on Monday for salivary gland cancer.
Which brings me to today.
9:30am I got a call that I had an oncologist appt at 12:30pm and to be there with insurance approval.
We live an hour from the hospital, so that gave me two hours to get a doctor's appointment, get to the doctor, explain everything to him (my doctor wasn't working today) get him to print his papers out, get them to the secretary, have them fax them to the main branch for approval and wait for the answer.
In the end we had fifteen minutes to spare.
My oncologist was only running half an hour late. She sees a max of 20 patients a day and I was number 21, so just 90 second late per patient, which isn't bad! She gave me plenty of time, we discussed all of our options and possible scenarios, and we have a plan for right now. I have injections and blood work to do as soon as we can get insurance approval and the injections ordered and I will be seeing her again in two weeks. I have her cell phone number as well and will be calling her with the results.
Most likely scenario at this point is surgery and then radiation. I really really don't want to go there with either of those. Since she thinks it is what is going to happen so she had me book a date for the radiation. Her preference was the middle of April (I need several weeks off of meds before the radiation so that is the soonest it could be) but I managed to buy some time and scheduled the end of May. I want to be healed from surgery before going into radiation if we do end up going that route and I don't even have a surgery date!
All in all. My brain is a scramble and I am a ball of nerves. I feel like I am over caffeinated, and maybe I am. When I crash from the adrenaline I will probably be more coherent, so if this doesn't make sense please forgive me.
So much for seven month wait to see her and there not being any availabilities before my appointment in July!
I am so tired and wiped out as I come down from my adrenaline and caffeine high. Bed time for the kids tonight will have to be on time. I am not sure if I need a laugh, a stiff drink or a cry.
Best of all, stress lowers my calcium levels and I can feel them going down and the tingling and cramping coming. Low calcium also causes anxiety, not something I need any help with right now.
On a great note, I have several weeks of cleaning help right now to help us get ready for Passover. B"H she started today and did most of the attic. For those not in the know, my attic is the kids playroom and the eves up there are our storage space. It has been so deep with toys and lacking in parental supervision over the last year that we couldn't wade through the mess to get to the storage. The kids couldn't play happily and it was an embarrassment.
In three hours, the cleaning help and my 9 year old managed to get it 97% done.
Of course the kids are up there playing again, now that it is fun and I don't have the energy to sit with them and get them to clean up again. I don't even have the energy to trek to the third floor to see what kind of mess they made, so the clean may not last long, but at least I know that it is conquerable, and that they enjoy clean.
Avraham Chaim is calling me, so goodbye.
Subscribe to:
Posts (Atom)
