So it has been a while, again. Just a struggle sometimes to get lap top out. Plus lap top has a lot of issues that slows it down. But, I knew if I didn't do this now, I probably wouldn't do it.
I am done with Cytoxan IV infusions (chemo). Had 12 infusions. Not in remission yet. Started Imuran/ Azathioprine yesterday. It works by suppressing the body’s immune system. Although this suppression can make it slightly harder to fight off infections, it also stabilizes the immune system if it is overactive. SO, I have to stay away from sick people. Masks are a fashion statement this winter. LOL
I've posted some of my progress on Facebook.
Friday, April 24, 2015
Friday, July 18, 2014
It's hip to be square
First I need to thank Janet for the title of my post!
I had my 9th Cytoxan infusion this month. "Love Potion #9". My symptoms that came after stopping Prednisone are pretty much taken care of. EXCEPT for the hip pain!!! So I had my hips x-rayed. I then went to an orthopedic doctor. I thought maybe Cortisone shots? Medication? Oh no........I need a Left Total Hip Replacement!!!! What the what! After a day of being confused, I have regrouped and ready to tackle this. Just not sure when it will be done. I don't think I can have any surgeries while on Cytoxan. If so, no surgery until late fall. Could have it here or in Akron. Depends on if my kidney doctor wants to be close or not, incase I have kidney problems. I will discuss with him my next appt.
Ortho said my hip socket should be round. Mine is square, thus the post title via my sister Janet! I am concerned about having surgery and it being winter and not moving much. I am prone to pneumonia! I will leave it in the hands of the professionals.
So now I sit and wait. Try to walk, but pain is no fun. :(
I had my 9th Cytoxan infusion this month. "Love Potion #9". My symptoms that came after stopping Prednisone are pretty much taken care of. EXCEPT for the hip pain!!! So I had my hips x-rayed. I then went to an orthopedic doctor. I thought maybe Cortisone shots? Medication? Oh no........I need a Left Total Hip Replacement!!!! What the what! After a day of being confused, I have regrouped and ready to tackle this. Just not sure when it will be done. I don't think I can have any surgeries while on Cytoxan. If so, no surgery until late fall. Could have it here or in Akron. Depends on if my kidney doctor wants to be close or not, incase I have kidney problems. I will discuss with him my next appt.
Ortho said my hip socket should be round. Mine is square, thus the post title via my sister Janet! I am concerned about having surgery and it being winter and not moving much. I am prone to pneumonia! I will leave it in the hands of the professionals.
So now I sit and wait. Try to walk, but pain is no fun. :(
Monday, June 2, 2014
Catch Up- More Cytoxan Infusions
It's been a long time. Had some ups. Had some downs. Shaved my head. Gained 40 lbs. on Prednisone. Off Prednisone now and have lost 12-15lbs. Don't eat much BUT can't exercise. Symptoms change everyday. Never know. I have become desensitized Symptoms continues but ones that stick around and that can make life difficult is diarrhea and hip pain. Plus with coughing so much, my unbilical hernia has gotten very large. I will call this alien baby, St. Elmo. He is the saint of stomach problems. Can't do anything about hernia till off Cytoxan infusion because of my compromised immune system. So St. Elmo and flowing dresses will be my friends for a while.
If I do anything, my blood pressure goes way down and my pulse goes way up, which makes me dizzy. It pisses me off big time!!!!
Garden is in. Flowers planted, all because Maribeth has helped soooo much. XXXOOO Strawberries are going crazy but we still need to cover them. Garlic I planted in the fall is going great. Still need to get mulch.
MB had "walking pneumonia" last week. I have and probably will always have a cough. Some times worse than other times. So we do our aerosol treatments and take our Mucinex. I was at Callie and Dave's last week watching Xavier. When I came home Landon spent the night with me. LOVE those boys. Below is the picture of myself and Landon before getting heads shaved for St. Baldricks's Day.
I go to get my 8th infusion tomorrow. Six infusions didn't do it. So......will need a total of 12 infusions of Cytoxan. I knew I wasn't in "remission" when he told me this. What else do I have to do. LOL
If I do anything, my blood pressure goes way down and my pulse goes way up, which makes me dizzy. It pisses me off big time!!!!
Garden is in. Flowers planted, all because Maribeth has helped soooo much. XXXOOO Strawberries are going crazy but we still need to cover them. Garlic I planted in the fall is going great. Still need to get mulch.
MB had "walking pneumonia" last week. I have and probably will always have a cough. Some times worse than other times. So we do our aerosol treatments and take our Mucinex. I was at Callie and Dave's last week watching Xavier. When I came home Landon spent the night with me. LOVE those boys. Below is the picture of myself and Landon before getting heads shaved for St. Baldricks's Day.
I go to get my 8th infusion tomorrow. Six infusions didn't do it. So......will need a total of 12 infusions of Cytoxan. I knew I wasn't in "remission" when he told me this. What else do I have to do. LOL
Friday, February 14, 2014
Valentine's Day
Woke up with same "twisted" pain in left side of abdomen, below rib cage. So Maribeth took me to Shelby ER. Drew blood, did chest X ray. NO pneumonia or anything worse that I was thinking of. Probably a strain! Didn't put me on any other antibiotic because I had just finished Z pak on Wed. and I take Bactrim DS on M-W-F routinely. Gave me a script for cough syrup with codeine.
This evening I am still coughing. Probably not as much. Twisted pain/strain still there. Ugh!
This evening I am still coughing. Probably not as much. Twisted pain/strain still there. Ugh!
Thursday, February 13, 2014
Kinda glad it's not hot out
Hello today is 2/12/14
No big medical changes since last dr. visit last month. Some of the swelling in my face has gone down. I still have jowls and my head looks like a square. I have gained 30lbs that I didn't need. This is why I am glad it's not hot out! I am still very tired and mad that I get SOB whenever I try to do something. My left hip and leg started to HURT again. I think it's like cyatic nerve pain. It gets so bad it makes me sick to my stomach. I limp when I walk. Sometimes left leg will start to "go out on me" but I haven't fallen. Thank you MB for carrying laundry up and down stairs. Glad my house is small with only stairs to the basement. I cook at times. I was VERY HAPPY to have my favorite son and favorite brother in law come to my house the end of Jan. and update my bathroom. I have had a toilet, vanity, med. cabinet, lights above med. cabinet, and cupboard above toilet for years.................. Brad and Bill worked for 3 days to put new floor boards in, new floor, bead board around and install the above items I had. Pictures to follow after we paint. I only have one bathroom in my house so it made for 3 interesting days. We were only without a toilet for one night so I made my own "potty chair". MB spent that night at her dad's. I got to cook meals for two hungry men. They seemed to like it. Only thing, I was up and about tooo much. Left hip got worse. Had to start taking Flexeril again. I would take 5mg in morning and 5mg in late afternoon and then maybe 10mg at bedtime. I don't like to take Flexeril because it makes me even more "foggy." But it helps the pain.
That weekend I started to feel like I was getting a sinus cold. Now this would be my first for the winter. Normally I would have one ALL winter long. But, with my resistance being low, I wasn't sure how my body would react to it now. Would I be able to fight it off? So it took another week and weekend, but now I have full fledge sinus cold. I called Dr. Anderson Monday. He ordered Z-pak for me and that it was ok to take the aerosol tx that I had from the spring. I was also having low grade fever, highest 100.5, and productive cough. When I cough really hard I feel like I could pass out, or I sneeze 10(?) times, really fast.
Sinuses were clear. Today, (Wed.) I called the doctor again because cough is worse and not coughing up much. No fever. Should I get a chest x ray? Plus last night in bed when I coughed it felt like things (?) were twisting up in my stomach?? My umbilical hernia is really pushing out a lot. I wonder is my hernia is screwing up my stomach? Questions to ask the good doc.
My next infusion date is Friday. BUT if I'm not better, I need to reschedule. FYI, I haven't heard from the doctor. Maybe in the morning they will call me back.
Haven't been out of the house since last infusion. OMG!!!!!! Or at least I can't remember going out.....maybe just in my dreams. Which my dreams are something else! MB just went to the grocery store for us. Thank you MB!
I also found out I get SSI disability in May! Should also be getting some money before that by end of this month from SSI. I am so confused with all of these agencies. I don't think about calling them because most days, I don't really "wake up" till late afternoon. I'm up and dressed but my head is not working. Plus I still spend most of my morning on the pot. :x You knew I couldn't go without bringing diarrhea up. LOL
2/13/14
Ok, today (Thurs) I called Dr Andersons office. Cancelled my appts to see him and for my infusion. Not having any fever but cough is nasty. When I cough, I have a twisted sister feeling in my left and sometimes right upper "alien baby" abdomen. I have been doing my aerosols that will hopefully break up phlegm in upper chest. NO FUN! Dr. Anderson told his nurse to tell me to see my family doctor. I feel kind of funny going to them. I will if I have too but will probably go to ER tomorrow or Sat. if I'm not doing better.
I AM SO TIRED OF BEING TIRED!!!!!! If I wasn't already crazy, I would be by now. I haven't had really a good cry in a while, I think it's time. Poor Maribeth just called me from work. She could tell I was choked up and said "are you crying?" hahaha Can't hide anything!
No big medical changes since last dr. visit last month. Some of the swelling in my face has gone down. I still have jowls and my head looks like a square. I have gained 30lbs that I didn't need. This is why I am glad it's not hot out! I am still very tired and mad that I get SOB whenever I try to do something. My left hip and leg started to HURT again. I think it's like cyatic nerve pain. It gets so bad it makes me sick to my stomach. I limp when I walk. Sometimes left leg will start to "go out on me" but I haven't fallen. Thank you MB for carrying laundry up and down stairs. Glad my house is small with only stairs to the basement. I cook at times. I was VERY HAPPY to have my favorite son and favorite brother in law come to my house the end of Jan. and update my bathroom. I have had a toilet, vanity, med. cabinet, lights above med. cabinet, and cupboard above toilet for years.................. Brad and Bill worked for 3 days to put new floor boards in, new floor, bead board around and install the above items I had. Pictures to follow after we paint. I only have one bathroom in my house so it made for 3 interesting days. We were only without a toilet for one night so I made my own "potty chair". MB spent that night at her dad's. I got to cook meals for two hungry men. They seemed to like it. Only thing, I was up and about tooo much. Left hip got worse. Had to start taking Flexeril again. I would take 5mg in morning and 5mg in late afternoon and then maybe 10mg at bedtime. I don't like to take Flexeril because it makes me even more "foggy." But it helps the pain.
That weekend I started to feel like I was getting a sinus cold. Now this would be my first for the winter. Normally I would have one ALL winter long. But, with my resistance being low, I wasn't sure how my body would react to it now. Would I be able to fight it off? So it took another week and weekend, but now I have full fledge sinus cold. I called Dr. Anderson Monday. He ordered Z-pak for me and that it was ok to take the aerosol tx that I had from the spring. I was also having low grade fever, highest 100.5, and productive cough. When I cough really hard I feel like I could pass out, or I sneeze 10(?) times, really fast.
Sinuses were clear. Today, (Wed.) I called the doctor again because cough is worse and not coughing up much. No fever. Should I get a chest x ray? Plus last night in bed when I coughed it felt like things (?) were twisting up in my stomach?? My umbilical hernia is really pushing out a lot. I wonder is my hernia is screwing up my stomach? Questions to ask the good doc.
My next infusion date is Friday. BUT if I'm not better, I need to reschedule. FYI, I haven't heard from the doctor. Maybe in the morning they will call me back.
Haven't been out of the house since last infusion. OMG!!!!!! Or at least I can't remember going out.....maybe just in my dreams. Which my dreams are something else! MB just went to the grocery store for us. Thank you MB!
I also found out I get SSI disability in May! Should also be getting some money before that by end of this month from SSI. I am so confused with all of these agencies. I don't think about calling them because most days, I don't really "wake up" till late afternoon. I'm up and dressed but my head is not working. Plus I still spend most of my morning on the pot. :x You knew I couldn't go without bringing diarrhea up. LOL
2/13/14
Ok, today (Thurs) I called Dr Andersons office. Cancelled my appts to see him and for my infusion. Not having any fever but cough is nasty. When I cough, I have a twisted sister feeling in my left and sometimes right upper "alien baby" abdomen. I have been doing my aerosols that will hopefully break up phlegm in upper chest. NO FUN! Dr. Anderson told his nurse to tell me to see my family doctor. I feel kind of funny going to them. I will if I have too but will probably go to ER tomorrow or Sat. if I'm not doing better.
I AM SO TIRED OF BEING TIRED!!!!!! If I wasn't already crazy, I would be by now. I haven't had really a good cry in a while, I think it's time. Poor Maribeth just called me from work. She could tell I was choked up and said "are you crying?" hahaha Can't hide anything!
Thursday, January 16, 2014
Mixed feelings
Haven't written in a while. I wish what I was thinking could be printed. I haven't had any energy to move.
When I had my infusion in Dec and saw Dr. Anderson, I was soooo swollen up and not happy. He decided to decrease my Prednisone so I would be off it by Jan infusion. Ok with me.......except, all my old symptoms came back full force. SOB was the worst. By the few day before Jan 10th infusion I felt like SHIT! I had my infusion on Jan 10th and saw the doctor. Told him I felt like SHIT! I have chills a lot but low grade fever only once or twice. Plus sky high (136 yikes) He decided to up my med I take for my pulse (Metoprolol) and put me back on 10mg of Prednisone. (was on 30mg), next Cytotoxan infusion (Feb 14th) will increase dose, and probably will have to have more than the 6 infusions that were schedule. Oh Well, if it eventually makes me better......
Also my eyes have been kinda foggy.(watched Downton Abbey with right eye closed) First I thought it was from cheeks being so big, not so. I just have to rest them a lot.
To be gross, since Sunday till yesterday afternoon, I have had diarrhea. Not normal diarrhea. Like when you eat and it hurts your stomach and then comes out as soon as you can say SHIT! So the last few days I have had NO energy. No fever but body chills. No coffee since Friday, didn't get out of nightgown. I did make myself get out of bed to sit my ars on the couch to watch tv. I even took a shower Wed evening and Maribeth helped me change sheet on my bed. I will call dr. tomorrow for update that he wanted. I will also tell him my liquid stool with flecks of something was bright yellow and smelled like metal. (Aren't you glad you read that) My body still smells like metal at times, that no one else says they can smell and my hair hasn't grown since my hair cut in Dec. With increase of Cytoxan in Feb, I wonder if it will fall out?
Today is Thursday. I had coffee and cereal and everything is going ok. Hungry but watching what I eat.
Description of S.O.B. -between shoulder blades get really tight. I mean really. Then I have heaviness in lower back. Once I sit down, it almost goes away.
I titled this post "mixed feelings" because I want to feel better, I know I will feel better, but last week was not fun at all!!!
Thank GOD for facetime. I can see Xavier. Need to Skype with Kendall and Landon more. FYI- Xavier had his cast and pins removed from his right thumb. He's back to almost normal. Goes for therapy to work on moving his thumb.
Hugs to everyone.
I tried to add pictures but they wouldn't download. Maybe they feel like me.
When I had my infusion in Dec and saw Dr. Anderson, I was soooo swollen up and not happy. He decided to decrease my Prednisone so I would be off it by Jan infusion. Ok with me.......except, all my old symptoms came back full force. SOB was the worst. By the few day before Jan 10th infusion I felt like SHIT! I had my infusion on Jan 10th and saw the doctor. Told him I felt like SHIT! I have chills a lot but low grade fever only once or twice. Plus sky high (136 yikes) He decided to up my med I take for my pulse (Metoprolol) and put me back on 10mg of Prednisone. (was on 30mg), next Cytotoxan infusion (Feb 14th) will increase dose, and probably will have to have more than the 6 infusions that were schedule. Oh Well, if it eventually makes me better......
Also my eyes have been kinda foggy.(watched Downton Abbey with right eye closed) First I thought it was from cheeks being so big, not so. I just have to rest them a lot.
To be gross, since Sunday till yesterday afternoon, I have had diarrhea. Not normal diarrhea. Like when you eat and it hurts your stomach and then comes out as soon as you can say SHIT! So the last few days I have had NO energy. No fever but body chills. No coffee since Friday, didn't get out of nightgown. I did make myself get out of bed to sit my ars on the couch to watch tv. I even took a shower Wed evening and Maribeth helped me change sheet on my bed. I will call dr. tomorrow for update that he wanted. I will also tell him my liquid stool with flecks of something was bright yellow and smelled like metal. (Aren't you glad you read that) My body still smells like metal at times, that no one else says they can smell and my hair hasn't grown since my hair cut in Dec. With increase of Cytoxan in Feb, I wonder if it will fall out?
Today is Thursday. I had coffee and cereal and everything is going ok. Hungry but watching what I eat.
Description of S.O.B. -between shoulder blades get really tight. I mean really. Then I have heaviness in lower back. Once I sit down, it almost goes away.
I titled this post "mixed feelings" because I want to feel better, I know I will feel better, but last week was not fun at all!!!
Thank GOD for facetime. I can see Xavier. Need to Skype with Kendall and Landon more. FYI- Xavier had his cast and pins removed from his right thumb. He's back to almost normal. Goes for therapy to work on moving his thumb.
Hugs to everyone.
I tried to add pictures but they wouldn't download. Maybe they feel like me.
Monday, December 16, 2013
Not well
I just don't know what to do with myself......
My tongue hurts. My back is so heavy, it hurts to walk. My vision is so blurry and my eyelid so heavy, I can't keep them open long. My thoughts are slow. I have periodic stabbing pain in my sides. My bowels still have a mind of their own. My face is still as large as the moon. I can't see my neck. Having the extra neck is weird. Can't look down. My glands in my neck ache. This goes up to my ears. Ears not in pain, just ache.
I want to do so much (really anything) and can't.
When I saw the doctor last Friday, he asked if I felt better...........I really don't. YET!
I just want the back bedroom cleaned out and organized.
My tongue hurts. My back is so heavy, it hurts to walk. My vision is so blurry and my eyelid so heavy, I can't keep them open long. My thoughts are slow. I have periodic stabbing pain in my sides. My bowels still have a mind of their own. My face is still as large as the moon. I can't see my neck. Having the extra neck is weird. Can't look down. My glands in my neck ache. This goes up to my ears. Ears not in pain, just ache.
I want to do so much (really anything) and can't.
When I saw the doctor last Friday, he asked if I felt better...........I really don't. YET!
I just want the back bedroom cleaned out and organized.
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