the food you are allowed to eat is totally garbage and you know you should do as the doctor ordered but are too tired to care...
Quinoa tastes good but might as well be poison. I really only had a little, but heck, that serving was enough to panic my PCP into calling the endocrinologist and nephrologist to make a new game plan. :blush:
I have been bad, really bad. I am sick. After radiation, on antibiotics for strep, I am tired. I want cheese. I want WHOLE grains. I want potatoes. I want fish. I want seeds and grains that aren't totally processed and bleached. I want cream of tomato soup. I want a granola bar.
This officially sucks and I don't want to be stuck eating garbage for the rest of my life and taking pills all.day.long.
The problem is, I can't just forget it all and bury my head in the sand. The human heart is a calcium pump and needs calcium within a narrow window to pump properly. Ignoring the problem is dangerous. My body doesn't regulate calcium or phosphorus at all any more. Not only does my diet mess everything up if I am not careful, any type of stress or illness causes my calcium to plummet.
This officially stinks.
Friday, August 28, 2009
Thursday, August 27, 2009
Antibiotics are good
phosphorus is not.
My PCP is a doll. She got my lab results yesterday, called the nephorologist and endocrinologist and made a plan and then called me.
Honestly if she had called me first I would have told her not to worry too much. Between the wedding and all of the post wedding parties including whole grains and healthy food like quinoa (which I only had a bit of, but it all adds up) I am sure I did it to myself quite honestly and if I am good about the diet my phosphorus level should go back down.
All in all, I feel like a tingly hypocalcemic mess. Between the high phosphorus, being sick and I think I forgot to take one set (out of seven) of meds two days ago, my nervous system is haywire. I am tingly and twitchy and have no energy.
I am praying hard that I feel better soon.
The kids go back to school next Tuesday. Today we are covering books and making challah and cookies. :) It has to be a good day no matter what. We need some nice summer memories.
Liba
My PCP is a doll. She got my lab results yesterday, called the nephorologist and endocrinologist and made a plan and then called me.
Honestly if she had called me first I would have told her not to worry too much. Between the wedding and all of the post wedding parties including whole grains and healthy food like quinoa (which I only had a bit of, but it all adds up) I am sure I did it to myself quite honestly and if I am good about the diet my phosphorus level should go back down.
All in all, I feel like a tingly hypocalcemic mess. Between the high phosphorus, being sick and I think I forgot to take one set (out of seven) of meds two days ago, my nervous system is haywire. I am tingly and twitchy and have no energy.
I am praying hard that I feel better soon.
The kids go back to school next Tuesday. Today we are covering books and making challah and cookies. :) It has to be a good day no matter what. We need some nice summer memories.
Liba
Monday, August 24, 2009
Sunday, August 23, 2009
Sunday update
It was nice seeing everyone and spending time with family. I am glad we went.
The kids are desperately overtired though and so am I.
Our zoo membership is up in two days and I am not seeing us use it again before then. Getting grumpy overtired kids out into the sunshine and keeping them busy would be a great idea, but I am not up for doing it.
Zeidy Siegal came by this evening. It was great to see him. He is seeming really old all of the sudden. I guess it makes sense, being a great grandfather to children old enough to get married would do that. If we had gone to the zoo we would have missed his visit, so it is all for the best!
My calcium is down again, my rbc and hgb are down. My lymphocytes are still low but up a bit. My throat hurts. Maybe it is a virus. Maybe I am just overtired.
The kids are desperately overtired though and so am I.
Our zoo membership is up in two days and I am not seeing us use it again before then. Getting grumpy overtired kids out into the sunshine and keeping them busy would be a great idea, but I am not up for doing it.
Zeidy Siegal came by this evening. It was great to see him. He is seeming really old all of the sudden. I guess it makes sense, being a great grandfather to children old enough to get married would do that. If we had gone to the zoo we would have missed his visit, so it is all for the best!
My calcium is down again, my rbc and hgb are down. My lymphocytes are still low but up a bit. My throat hurts. Maybe it is a virus. Maybe I am just overtired.
Friday, August 21, 2009
The wedding was nice
and I am still tired. ;)
It was actually quite beautiful and we are looking forward to Shabbos in Tel Stone with the family.
I didn't ask my doctor about going, though I did see her today.
She is concerned about the lymphocytopenia. My lymphocyte count is down even more from Monday. Yesterday's count was 0.70. She spoke with the oncologist and the plan is to do labs again Sunday. She is still hoping that I have a virus.
My right shoulder is still sore. I am hoping that I am using it too much, the feeling is coming back or I really slept on it funny. I am fearing that it is because there is cancer that that took up the radiation and is hurting because of that. Swallowing is also still a problem. The swelling from the radiation isn't as externally obvious but turning my neck or swallowing makes me feel like I am being strangled.
I am also having incredible heartburn. I was up for over an hour last night because I woke up with my mouth full of acid and Tums weren't working and neither did anything else.
Mostly I can still smile and am happy, I know I sound whiny now, there is just so much going on! I was able to leave the kids with my husband and go pray at Kever Rochel this morning and then went shopping, to see my doctor and got lots more calcium from the pharmacy and got back before noon. :)
Off to pack. We are leaving in just over two hours!!
It was actually quite beautiful and we are looking forward to Shabbos in Tel Stone with the family.
I didn't ask my doctor about going, though I did see her today.
She is concerned about the lymphocytopenia. My lymphocyte count is down even more from Monday. Yesterday's count was 0.70. She spoke with the oncologist and the plan is to do labs again Sunday. She is still hoping that I have a virus.
My right shoulder is still sore. I am hoping that I am using it too much, the feeling is coming back or I really slept on it funny. I am fearing that it is because there is cancer that that took up the radiation and is hurting because of that. Swallowing is also still a problem. The swelling from the radiation isn't as externally obvious but turning my neck or swallowing makes me feel like I am being strangled.
I am also having incredible heartburn. I was up for over an hour last night because I woke up with my mouth full of acid and Tums weren't working and neither did anything else.
Mostly I can still smile and am happy, I know I sound whiny now, there is just so much going on! I was able to leave the kids with my husband and go pray at Kever Rochel this morning and then went shopping, to see my doctor and got lots more calcium from the pharmacy and got back before noon. :)
Off to pack. We are leaving in just over two hours!!
Thursday, August 20, 2009
I am still incredibly tired.
Really really tired.
Sorry for the lack of updates.
I spent the last several days trying to get the house back in order, but left feeling like I am just chasing my tail. It may look better, but not enough better for all of the effort. I am tired of nagging the kids and can't do everything myself. I just don't have the energy.
B"H my brother in law's wedding is today. I have clothing for everyone, I think. 4pm we leave, that is four hours from now. At 2:30pm the girls go to get their hair done at 3:45pm we should be slipping them into their dresses. I hope Avraham Chaim is willing to wear his dress shoes. I should go iron a shirt for him and figure out which dress pants he is wearing. Boys are much easier than girls. :)
Lab results should be in at around two. I think my calcium is back up. I hope I am right. I hope it isn't up too high. This tight rope walk is getting old. I am down to one vein to draw from, in the back of my hand, and it hurts. I had it easy for so long with the good vein that kept on giving. I hope that the one in my hand lasts until we have a vein willing to give blood again somewhere else.
Sorry for the lack of updates.
I spent the last several days trying to get the house back in order, but left feeling like I am just chasing my tail. It may look better, but not enough better for all of the effort. I am tired of nagging the kids and can't do everything myself. I just don't have the energy.
B"H my brother in law's wedding is today. I have clothing for everyone, I think. 4pm we leave, that is four hours from now. At 2:30pm the girls go to get their hair done at 3:45pm we should be slipping them into their dresses. I hope Avraham Chaim is willing to wear his dress shoes. I should go iron a shirt for him and figure out which dress pants he is wearing. Boys are much easier than girls. :)
Lab results should be in at around two. I think my calcium is back up. I hope I am right. I hope it isn't up too high. This tight rope walk is getting old. I am down to one vein to draw from, in the back of my hand, and it hurts. I had it easy for so long with the good vein that kept on giving. I hope that the one in my hand lasts until we have a vein willing to give blood again somewhere else.
Monday, August 17, 2009
Lab results
I can't get through to my endocrinologist and my PCP is on vacation. I am not sure what to do about my calcium level and am scratching my head over the drop in my HBG (it was over 14 the last several times it was checked) and lymphocytes. I don't know if the lymphocytes are low enough to worry about or not.
My brother in law's wedding is this week and we are going to be around a lot of kids and germs.
My stomach is a huge mess right now too, which makes getting my calcium up harder. Because of my severe gastrointestinal distress (to put it politely) I am not absorbing well. Realistically it may take IV calcium to get it back up, but since no one has told me I have to go in, I haven't. I hope I am not being stupid. The leg cramps and the tingling have gotten sort of normal. I expect that the cramps will wake me up tonight but they don't make me as nutty as they used to, even with lower calcium levels. I don't think that they are any less than previous times I have had major calcium drops, I think that I am just more used to it.
My brother in law's wedding is this week and we are going to be around a lot of kids and germs.
My stomach is a huge mess right now too, which makes getting my calcium up harder. Because of my severe gastrointestinal distress (to put it politely) I am not absorbing well. Realistically it may take IV calcium to get it back up, but since no one has told me I have to go in, I haven't. I hope I am not being stupid. The leg cramps and the tingling have gotten sort of normal. I expect that the cramps will wake me up tonight but they don't make me as nutty as they used to, even with lower calcium levels. I don't think that they are any less than previous times I have had major calcium drops, I think that I am just more used to it.
Complete Blood Count
----------------------
WBC 5.28 K/uL 4-11 (.*.......)
RBC 4.30 M/uL 4.2-5.4 (*........)
HGB 12.0 g/dL 12.3-16 *(.........)
HCT 36.6 % 35-47 (*........)
MCV 85.1 fL 78-100 (..*......)
MCH 28.4 pg 27-34 (.*.......)
MCHC 33.3 g/dL 32-37 (.*.......)
PLT 289 K/uL 140-430 (....*....)
RDW-SD 46.0 fL
RDW-CV 15.0 % 11.5-15 (........*)
PDW 14.1 fL 9-17 (.....*...)
MPV 11.8 fL 7.8-12 (........*)
P-LCR 38.8 %
Differential
----------------------
Neutrophils % 73.4 % 37-70 (.........)*
Lymphocytes % 16.3 % 20-45 *(.........)
Monocytes % 7.2 % 1-10 (.....*...)
Eosinophils % 2.7 % 0-7 (..*......)
Basophils % 0.4 % 0-2 (.*.......)
Neutrophils 3.88 K/uL 1.5-7.7 (..*......)
Lymphocytes 0.86 K/uL 1.5-3.5 *(.........)
Monocytes 0.38 K/uL 0.1-1 (..*......)
Eosinophils 0.14 K/uL 0-0.7 (.*.......)
Basophils 0.02 K/uL 0-0.2 (*........)
Biochemistry
----------------------
Calcium 8.0 mg/dL 8.6-10.2 *(.........)
Phosphorus 5.5 mg/dL 2.7-4.5 (.........)*
----------------------
I am back
Isolation was not fun, but it is over B"H. I will make another post about that later I hope.
I am back on my thyroid meds and just had my first blood draw since before the RAI. I am sure I am hypocalcemic, it is just a matter of how hypocalcemic I am. My husband is waiting anxiously for results, which is cute. This is the first time he has even asked what time results come in.
My good vein failed me this morning. After more than 100 draws from that one vein it wouldn't give any blood. The only vein left now is the back of my hand, which hurts me and makes the nurse a nervous mess as well. Oh well.
I am back on my thyroid meds and just had my first blood draw since before the RAI. I am sure I am hypocalcemic, it is just a matter of how hypocalcemic I am. My husband is waiting anxiously for results, which is cute. This is the first time he has even asked what time results come in.
My good vein failed me this morning. After more than 100 draws from that one vein it wouldn't give any blood. The only vein left now is the back of my hand, which hurts me and makes the nurse a nervous mess as well. Oh well.
Thursday, August 6, 2009
Lab results
My TSH is high, which thought it doens't feel good is good. We needed it over 50 for the treatment Sunday and it is.
My thyoglobulin is higher than when tested last time, which means more (cancerous) thyroid cells in my body. Goal is zero, treatment generally happens over 2, so 12.2 means that I really have no choice about Sunday, not that anyone ever gave me a choice. It went from 7 to 11 to 12 over the last couple months. It isn't a good trend.
I feel lousy.
My calcium is okay. My phosphorus is not. My stomach is not. I wonder if it is the crazy diet, my crohn's or stress.
My house is cluttered with school supplies, toys and papers and people who have never seen it before are coming while I am gone. I think my MIL is sleeping here tonight and the guest bed is covered in folded laundry.
Cancer seems to have thrown pride out the window.
My thyoglobulin is higher than when tested last time, which means more (cancerous) thyroid cells in my body. Goal is zero, treatment generally happens over 2, so 12.2 means that I really have no choice about Sunday, not that anyone ever gave me a choice. It went from 7 to 11 to 12 over the last couple months. It isn't a good trend.
I feel lousy.
My calcium is okay. My phosphorus is not. My stomach is not. I wonder if it is the crazy diet, my crohn's or stress.
My house is cluttered with school supplies, toys and papers and people who have never seen it before are coming while I am gone. I think my MIL is sleeping here tonight and the guest bed is covered in folded laundry.
Cancer seems to have thrown pride out the window.
Biochemistry
----------------------
Calcium 8.7 mg/dL 8.6-10.2 (*........)
Phosphorus 5.0 mg/dL 2.7-4.5 (.........)*
Endocrinology
----------------------
TSH 87.03 mIU/L 0.35-4.94 (.........)*
Free T4 5.55 pmol/L 9-19 *(.........)
Total T3 0.7 nmol/L 0.89-2.44 *(.........)
Thyroglobulin 12.2 ng/mL
Ref. Values: Normal < 55 ng/mL
Autoimmunity
----------------------
Anti-TPO <10.0 IU/mL
Reference values
Normal <35 IU/mL
Thyroglobulin Ab <20.0 IU/mL
Reference values
Normal <40 IU/mL
Wednesday, August 5, 2009
Slow going
I am not sure how much of the feeling awful and exhaustion is still from the flu and how much is from hypothyroidism, and the hypocalcemia that came with the flu.
My TSH last week was almost 40. I had labs drawn today and am awaiting the results. I wonder if it is over 100 yet. They also drew thyroglobin so we will have an idea how much the thyroid cells are multiplying. I hope to have results tomorrow.
On a good note, my calcium is finally back up to the bottom of the low range. Being sick knocked it way down and I have been miserable with the tingling and cramping. Today I am a bit less so B"H. Phosphorus is still a bit high (5.0) even though I am barely eating since I am sick. There is no way I have eaten 500mg of phosphorus foods any day this week. That is just not right.
I am very worried about what will happen with labs once I am radioactive. I have been warned that blood samples have to be handled specially and marked for a month after the treatment, but no one knows what the protocol is. The nurses called the main lab, but no one had any information for them.
I am still having major problems with my calcium and phosphorus levels, so it isn't as if we can just stop doing blood tests for a month. We might be able to do just twice a week instead of three times a week, in a dream if all went well once a week might suffice, but not with the way things are going now. I have no idea what is going to happen with labs next week while I am in isolation. I guess we will just pray that my levels are safe because I don't think there is much else to do.
I really wanted vegetable soup today. The girls helped peal the vegetables and we made up a big pot. It hit the spot and everyone was happy. We had soup, rice and fresh rolls for lunch. I love my mixer and am so glad they were able to fix it! Some of the rolls the girls made were very interesting shapes. Esther Rivka's was easily recognizable as a person, even after it was done baking. I think the best part of cooking with the kids is that they usually eat the results so happily. :) We had a couple complaints of burnt tongues because they didn't want to wait for it to cool, but no complaints about lunch.
I am too tired to do very much right now. Half way through making the soup I decided it hadn't been a good idea to have started but there was no turning back. It was worth it. I slept in my recliner while the kids played with the marble run at my feet. I am not sure how because it is quite loud, but I was that tired from making a pot of soup.
My TSH last week was almost 40. I had labs drawn today and am awaiting the results. I wonder if it is over 100 yet. They also drew thyroglobin so we will have an idea how much the thyroid cells are multiplying. I hope to have results tomorrow.
On a good note, my calcium is finally back up to the bottom of the low range. Being sick knocked it way down and I have been miserable with the tingling and cramping. Today I am a bit less so B"H. Phosphorus is still a bit high (5.0) even though I am barely eating since I am sick. There is no way I have eaten 500mg of phosphorus foods any day this week. That is just not right.
I am very worried about what will happen with labs once I am radioactive. I have been warned that blood samples have to be handled specially and marked for a month after the treatment, but no one knows what the protocol is. The nurses called the main lab, but no one had any information for them.
I am still having major problems with my calcium and phosphorus levels, so it isn't as if we can just stop doing blood tests for a month. We might be able to do just twice a week instead of three times a week, in a dream if all went well once a week might suffice, but not with the way things are going now. I have no idea what is going to happen with labs next week while I am in isolation. I guess we will just pray that my levels are safe because I don't think there is much else to do.
I really wanted vegetable soup today. The girls helped peal the vegetables and we made up a big pot. It hit the spot and everyone was happy. We had soup, rice and fresh rolls for lunch. I love my mixer and am so glad they were able to fix it! Some of the rolls the girls made were very interesting shapes. Esther Rivka's was easily recognizable as a person, even after it was done baking. I think the best part of cooking with the kids is that they usually eat the results so happily. :) We had a couple complaints of burnt tongues because they didn't want to wait for it to cool, but no complaints about lunch.
I am too tired to do very much right now. Half way through making the soup I decided it hadn't been a good idea to have started but there was no turning back. It was worth it. I slept in my recliner while the kids played with the marble run at my feet. I am not sure how because it is quite loud, but I was that tired from making a pot of soup.
Sunday, August 2, 2009
Tamiflu here I come
and you better work.
I have seven days to get better and get everything ready for a week without mommy home.
I feel like funk. Really. I could cry. Sleeping isn't going well either, which is just wrong.
When I refused to go to the ER to be tested they ran me around in circles about the flu test today, literally. From place to place. I am too tired to type out the journey. All in all it is done and it won't be. They paid for a cab to take me from one side of the city to the other, didn't go near me without gowns, gloves, eye shields and masks, swabbed my nose and throat and said it was done, then called and said that they don't run the test outside of the ER anymore. They begged me to bring it to the ER, but I know full well that if I go in I will never get out.
On a good note, once they figured the Tamiflu out, it was free. They wouldn't let me out of the room to get it, the nurse did that for me.
Now I have plenty of those nifty face masks and a note saying I am to stay home, in my room, away from my children and other people.
I have seven days to get better and get everything ready for a week without mommy home.
I feel like funk. Really. I could cry. Sleeping isn't going well either, which is just wrong.
When I refused to go to the ER to be tested they ran me around in circles about the flu test today, literally. From place to place. I am too tired to type out the journey. All in all it is done and it won't be. They paid for a cab to take me from one side of the city to the other, didn't go near me without gowns, gloves, eye shields and masks, swabbed my nose and throat and said it was done, then called and said that they don't run the test outside of the ER anymore. They begged me to bring it to the ER, but I know full well that if I go in I will never get out.
On a good note, once they figured the Tamiflu out, it was free. They wouldn't let me out of the room to get it, the nurse did that for me.
Now I have plenty of those nifty face masks and a note saying I am to stay home, in my room, away from my children and other people.
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