Guest guest Posted September 9, 2008 Report Share Posted September 9, 2008 Chi Glad to hear from you! I agree with all of your comments! I, too, am having my health issues including tummy stuff (D and pain) related to Gleevec, skin things (Redness and skin peeling on my arms and slapped-cheek looking redness--I look like I've just run a mile and with my sweats, I feel like it too), severe sweats that are the bane of my existence and unrelenting, and other things too trivial to mention--the usual fatigue, etc. I have been managing to work full-time and get my boys to their soccer games, etc. I was recently hospitalized for high fever which turned out to be a urinary tract infection which was very odd, since I had NO symptoms of that whatsoever. Apparently it was just lurking, waiting to get me! LOL! Anyway, I was hospitalized for 5 days, several of them in intensive care. It was horrible and not at all where I wanted to be. Our illness affects our health in so many ways it is hard to say which things are due to the leukemia, and which things are just normal illnesses that anyone could get. I tend to think most odd things (like my UTI) could be related to the fact that our immune systems are not totally normal and perhaps our white cells do not work the way they should?! Any other thoughts on this? Anyway, I will be glad when Lottie is back. I miss her! I also have a son in 8th grade and one in 4th grade, so I am frantically busy right now with start of school things. It feels good and I love the hustle and bustle. I guess it takes having a serious illness to make you appreciate all of life's little routines more and more. Best wishes, Vicki > > I haven't posted for a while because I have been having some health > ups and downs-so I thought I'd catch up a few things. > > 1. I was saddened by the passing of some of our warriors most > recently from across the Pond. > > 2. Glad to hear everyone survived the winds and rains even though it > appears some are still displaced until services are restored. It's > not as if we don't have enough challenges does the weather have to > get involved also? > > 3. I still have the list for everyone for their Me2 shirts. I have > been preoccupied( my health, my mom's health my two friends who were > diagnosed with thyroid cancer/ one is an ovarian cancer survivor, > another of my friends was dx with ovarian and brain lesions) oh and > my 14 year old enetering high school-so lots on my mind but I haven't > forgotten...they just fell to the lower end of my priorities. > > 4. Congrats to Sue on her holding steady. > > 5. Health update- I have been having stomach problems on and off. > Pain and feeling full. They thought it was my spleen but ultrasound > showed I have a spleen on the small side not enlarged.I went home to > Pa to see my almost 88 year old mom and started feeling sick- thought > I may have to cut my vacation short and return to Ca. No way to I > want to be hospitalized away from my hem/onc. I love my small town > but I don't think that would be a healthy decision. Anyway I felt > better, came back to California, had further ultrasound testing and > then on Wednesday was dx with a staph infection and a fever( maybe > from the testing who knows, I've been trying to remember if the tech > wore gloves). Received a call from Kaiser that said my ultrasound > results were all in normal limits. Received a copy of my report in > Saturday's mail ( I get copies of everything) and discovered I have a > cyst on my ovary- clearly they think it is normal for a post > menopausal, 56 year old woman to have a cyst on her ovary- not so > says the literature. So now I'm calling to make an appointment to > have them explain why they didn't tell me and what are we going to do > about it. > > So just a wave hello to all the CMLers , friends and family. I check > in to read the posts every few days. Hang in there, everyone. > > Chi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2008 Report Share Posted September 9, 2008 Vicki- I'm hoping you feel better too. My rash finally went away after about 18 months... I have human skin again, so just keep holding on, hopefully yours will get better. How are your boys doing with your diagnosis? My daughter does well most of the time- treats me normally which means there are times I'd like to strangle her...but every once and a while she'll get sad and crawl into bed with me or even start crying. I'm glad she is so busy with volley ball and looking at boys( from a distance) that it doesn't take up her whole life. On the very positive front- my doc said I would see him every six months and have blood tests every 3 months. I didn't say anything in the office, but I wrote him a very nice note thanking him for saving my life and for the very good care he has given me. I also said I had no problem with seeing him every 6 months BUT- I'd like to follow the International protocol( I included a copy) blood tests monthy, Q-PCR quarterly and BMB/BMA yearly. Today, I received a voicemail message from his nurse( her name is Mercy-what better name for an Onc nurse)- he was putting the tests into the computer so that I will receive the CBC with Diff monthly, etc just as I requested. I think I asked for quarterly liver tests also. He really is a very kind doc but he is not a CML specialist. I tell everyone Kaiser will probably take out a contract on me so they can stop paying. But we have to advocate for ourselves- we have a practice with one CML patient and it is our intention to keep him/her alive. I think you are correct we are easy targets for every opportunistic bug . I work full time but there are days that I wonder if that is what's best-if working 4- 10 hour days wears me out- more than if I were to use my disability. I worry though about if I should be doing more with my daughter traveling etc- but I am hopeful when I see the surviving/thriving warriors on this list. we'll all hang in there together. Sending positive thoughts your way. From: vickistu <vickistu@...> Subject: [ ] Re: Misc CML stuff Date: Monday, September 8, 2008, 5:05 PM Chi Glad to hear from you! I agree with all of your comments! I, too, am having my health issues including tummy stuff (D and pain) related to Gleevec, skin things (Redness and skin peeling on my arms and slapped-cheek looking redness--I look like I've just run a mile and with my sweats, I feel like it too), severe sweats that are the bane of my existence and unrelenting, and other things too trivial to mention--the usual fatigue, etc. I have been managing to work full-time and get my boys to their soccer games, etc. I was recently hospitalized for high fever which turned out to be a urinary tract infection which was very odd, since I had NO symptoms of that whatsoever. Apparently it was just lurking, waiting to get me! LOL! Anyway, I was hospitalized for 5 days, several of them in intensive care. It was horrible and not at all where I wanted to be. Our illness affects our health in so many ways it is hard to say which things are due to the leukemia, and which things are just normal illnesses that anyone could get. I tend to think most odd things (like my UTI) could be related to the fact that our immune systems are not totally normal and perhaps our white cells do not work the way they should?! Any other thoughts on this? Anyway, I will be glad when Lottie is back. I miss her! I also have a son in 8th grade and one in 4th grade, so I am frantically busy right now with start of school things. It feels good and I love the hustle and bustle. I guess it takes having a serious illness to make you appreciate all of life's little routines more and more. Best wishes, Vicki > > I haven't posted for a while because I have been having some health > ups and downs-so I thought I'd catch up a few things. > > 1. I was saddened by the passing of some of our warriors most > recently from across the Pond. > > 2. Glad to hear everyone survived the winds and rains even though it > appears some are still displaced until services are restored. It's > not as if we don't have enough challenges does the weather have to > get involved also? > > 3. I still have the list for everyone for their Me2 shirts. I have > been preoccupied( my health, my mom's health my two friends who were > diagnosed with thyroid cancer/ one is an ovarian cancer survivor, > another of my friends was dx with ovarian and brain lesions) oh and > my 14 year old enetering high school-so lots on my mind but I haven't > forgotten... they just fell to the lower end of my priorities. > > 4. Congrats to Sue on her holding steady. > > 5. Health update- I have been having stomach problems on and off. > Pain and feeling full. They thought it was my spleen but ultrasound > showed I have a spleen on the small side not enlarged.I went home to > Pa to see my almost 88 year old mom and started feeling sick- thought > I may have to cut my vacation short and return to Ca. No way to I > want to be hospitalized away from my hem/onc. I love my small town > but I don't think that would be a healthy decision. Anyway I felt > better, came back to California, had further ultrasound testing and > then on Wednesday was dx with a staph infection and a fever( maybe > from the testing who knows, I've been trying to remember if the tech > wore gloves). Received a call from Kaiser that said my ultrasound > results were all in normal limits. Received a copy of my report in > Saturday's mail ( I get copies of everything) and discovered I have a > cyst on my ovary- clearly they think it is normal for a post > menopausal, 56 year old woman to have a cyst on her ovary- not so > says the literature. So now I'm calling to make an appointment to > have them explain why they didn't tell me and what are we going to do > about it. > > So just a wave hello to all the CMLers , friends and family. I check > in to read the posts every few days. Hang in there, everyone. > > Chi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2008 Report Share Posted September 9, 2008 Vicki- I'm hoping you feel better too. My rash finally went away after about 18 months... I have human skin again, so just keep holding on, hopefully yours will get better. How are your boys doing with your diagnosis? My daughter does well most of the time- treats me normally which means there are times I'd like to strangle her...but every once and a while she'll get sad and crawl into bed with me or even start crying. I'm glad she is so busy with volley ball and looking at boys( from a distance) that it doesn't take up her whole life. On the very positive front- my doc said I would see him every six months and have blood tests every 3 months. I didn't say anything in the office, but I wrote him a very nice note thanking him for saving my life and for the very good care he has given me. I also said I had no problem with seeing him every 6 months BUT- I'd like to follow the International protocol( I included a copy) blood tests monthy, Q-PCR quarterly and BMB/BMA yearly. Today, I received a voicemail message from his nurse( her name is Mercy-what better name for an Onc nurse)- he was putting the tests into the computer so that I will receive the CBC with Diff monthly, etc just as I requested. I think I asked for quarterly liver tests also. He really is a very kind doc but he is not a CML specialist. I tell everyone Kaiser will probably take out a contract on me so they can stop paying. But we have to advocate for ourselves- we have a practice with one CML patient and it is our intention to keep him/her alive. I think you are correct we are easy targets for every opportunistic bug . I work full time but there are days that I wonder if that is what's best-if working 4- 10 hour days wears me out- more than if I were to use my disability. I worry though about From: vickistu <vickistu@...> Subject: [ ] Re: Misc CML stuff Date: Monday, September 8, 2008, 5:05 PM Chi Glad to hear from you! I agree with all of your comments! I, too, am having my health issues including tummy stuff (D and pain) related to Gleevec, skin things (Redness and skin peeling on my arms and slapped-cheek looking redness--I look like I've just run a mile and with my sweats, I feel like it too), severe sweats that are the bane of my existence and unrelenting, and other things too trivial to mention--the usual fatigue, etc. I have been managing to work full-time and get my boys to their soccer games, etc. I was recently hospitalized for high fever which turned out to be a urinary tract infection which was very odd, since I had NO symptoms of that whatsoever. Apparently it was just lurking, waiting to get me! LOL! Anyway, I was hospitalized for 5 days, several of them in intensive care. It was horrible and not at all where I wanted to be. Our illness affects our health in so many ways it is hard to say which things are due to the leukemia, and which things are just normal illnesses that anyone could get. I tend to think most odd things (like my UTI) could be related to the fact that our immune systems are not totally normal and perhaps our white cells do not work the way they should?! Any other thoughts on this? Anyway, I will be glad when Lottie is back. I miss her! I also have a son in 8th grade and one in 4th grade, so I am frantically busy right now with start of school things. It feels good and I love the hustle and bustle. I guess it takes having a serious illness to make you appreciate all of life's little routines more and more. Best wishes, Vicki > > I haven't posted for a while because I have been having some health > ups and downs-so I thought I'd catch up a few things. > > 1. I was saddened by the passing of some of our warriors most > recently from across the Pond. > > 2. Glad to hear everyone survived the winds and rains even though it > appears some are still displaced until services are restored. It's > not as if we don't have enough challenges does the weather have to > get involved also? > > 3. I still have the list for everyone for their Me2 shirts. I have > been preoccupied( my health, my mom's health my two friends who were > diagnosed with thyroid cancer/ one is an ovarian cancer survivor, > another of my friends was dx with ovarian and brain lesions) oh and > my 14 year old enetering high school-so lots on my mind but I haven't > forgotten... they just fell to the lower end of my priorities. > > 4. Congrats to Sue on her holding steady. > > 5. Health update- I have been having stomach problems on and off. > Pain and feeling full. They thought it was my spleen but ultrasound > showed I have a spleen on the small side not enlarged.I went home to > Pa to see my almost 88 year old mom and started feeling sick- thought > I may have to cut my vacation short and return to Ca. No way to I > want to be hospitalized away from my hem/onc. I love my small town > but I don't think that would be a healthy decision. Anyway I felt > better, came back to California, had further ultrasound testing and > then on Wednesday was dx with a staph infection and a fever( maybe > from the testing who knows, I've been trying to remember if the tech > wore gloves). Received a call from Kaiser that said my ultrasound > results were all in normal limits. Received a copy of my report in > Saturday's mail ( I get copies of everything) and discovered I have a > cyst on my ovary- clearly they think it is normal for a post > menopausal, 56 year old woman to have a cyst on her ovary- not so > says the literature. So now I'm calling to make an appointment to > have them explain why they didn't tell me and what are we going to do > about it. > > So just a wave hello to all the CMLers , friends and family. I check > in to read the posts every few days. Hang in there, everyone. > > Chi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2008 Report Share Posted September 12, 2008 Hi China--what a wonderful idea--sending your doc a copy of the protocol! That was definitely awesome self-advocacy, and so smart! My boys are the same as your daughter--they are normal boys much of the time, but I think they treat me very sweetly at times when they are thinking about the leukemia. They are wonderful cuddlers and always have been, but even more so since my illness. They are very understanding when I feel tired or sick from Gleevec, and are very nurturing, which I definitely appreciate. Otherwise, they don't seem too traumatized. I keep telling them that I am almost regular old mom--meaning healthy again--and the Gleevec should help keep me that way--but I just need a little extra TLC now and then to stay that way. They are good with that. It helps them to see me working every day and that is why I do it (along with supporting my family, of course!) I would love to work part time, but also feel work is a good distraction, for me. I am not sure I would be a very productive person if I were not working--I am lazy by nature and would curl up with a movie and my dog 99% of the time. I love getting out with people and medical transcription is an awesomely fun job to do so I am happy with that. I get into the big city every day which is fun, and ride the bus home late at night, which is also fun once you get used to it. I know I would love more time with my boys and doing the things they need me for, but my husband fills in for me and does a great job. We do lots together on the weekends, which for me are Friday and Saturday. My face redness and drenching sweats just seem to have up days and down days--lately it's been pretty good, for about the last week or so--last week was horrible. My tummy hasn't been too bad, either. I have been unable to drop a few pounds which I really want to do and my doctor (not heme/onc specialist, but regular primary care physician) has been nagging me to do it--no matter what I do diet- wise, I can't seem to get things to start moving in a downward direction. I have a great appetite, and I seem to retain so much fluid that it inches up instead of down. Any ideas about good little weight loss tricks? I am 53, so it is harder and harder it seems to lose weight--my metabolism works against me. I walk fairly briskly, with lots of hills, an hour a day, which is good for many things, but it doesn't seem to help me lose weight at all. Be healthy and happy, Hugs, Vicki > > > > I haven't posted for a while because I have been having some > health > > ups and downs-so I thought I'd catch up a few things. > > > > 1. I was saddened by the passing of some of our warriors most > > recently from across the Pond. > > > > 2. Glad to hear everyone survived the winds and rains even though > it > > appears some are still displaced until services are restored. It's > > not as if we don't have enough challenges does the weather have to > > get involved also? > > > > 3. I still have the list for everyone for their Me2 shirts. I have > > been preoccupied( my health, my mom's health my two friends who > were > > diagnosed with thyroid cancer/ one is an ovarian cancer survivor, > > another of my friends was dx with ovarian and brain lesions) oh > and > > my 14 year old enetering high school-so lots on my mind but I > haven't > > forgotten... they just fell to the lower end of my priorities. > > > > 4. Congrats to Sue on her holding steady. > > > > 5. Health update- I have been having stomach problems on and off. > > Pain and feeling full. They thought it was my spleen but > ultrasound > > showed I have a spleen on the small side not enlarged.I went home > to > > Pa to see my almost 88 year old mom and started feeling sick- > thought > > I may have to cut my vacation short and return to Ca. No way to I > > want to be hospitalized away from my hem/onc. I love my small > town > > but I don't think that would be a healthy decision. Anyway I felt > > better, came back to California, had further ultrasound testing > and > > then on Wednesday was dx with a staph infection and a fever( maybe > > from the testing who knows, I've been trying to remember if the > tech > > wore gloves). Received a call from Kaiser that said my ultrasound > > results were all in normal limits. Received a copy of my report > in > > Saturday's mail ( I get copies of everything) and discovered I > have a > > cyst on my ovary- clearly they think it is normal for a post > > menopausal, 56 year old woman to have a cyst on her ovary- not so > > says the literature. So now I'm calling to make an appointment to > > have them explain why they didn't tell me and what are we going to > do > > about it. > > > > So just a wave hello to all the CMLers , friends and family. I > check > > in to read the posts every few days. Hang in there, everyone. > > > > Chi > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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