Ok, OK, so I haven't been out here for almost a month. Lots of updates.
Mom had her MRI which took over 1 1/2 hours. She said she NEVER wanted to do that again. The results were they found nothing that would be causing her pain so they are just calling it Neuropathy. Neuropathy does not include swelling so not sure whats up with that. They put her on a low dose of Lyrica but it did nothing. She is now back up to 300mg of neurotin 4 times a day and it is working a little. We have a follow up with the neurologist this month. I am going to call and see if we can up the neurotin again.
We saw the oncologist last week and no chemo is official. She will have to have her port flushed this week and will follow up with them every 3 months unless something comes up. They will not do a PET scan.
I have the home health care nurse again for 6 weeks, one week already gone. I don't think we will be able to continue it after that as I asked what the criteria is and we don't have anything to go on.
Mom decided she wanted to get Life Line so we ordered that. It took a while for her to figure out exactly where to press the button and we had to draw a little black dot. I will now be able to run errands and go to bible study.
Last night at around 11:30pm I heard her call Keo I need help. I went in her room and she was on the floor on her knees. She had gone out in the living room to get some nuts and her legs gave out. She crawled into the bedroom thinking she could get up and couldn't. I could not get her up so had to wake Mike up. Both of our backs are out. I told her she has to stop doing that or wear her life line at night. Her one knee has rug burn on it now. Will see if it bruises.
Mom went to church Sunday and it was a wonderful day. We sat outside for a while in the afternoon and it was beautiful and I saw a hummingbird! Its only the 2nd time I have seen one in the 30 years I have been in Florida.
The weather has been beautiful here and mom sat outside this morning to eat breakfast. She got to see a red headed woodpecker, enjoy the morning and I read some from "Hinds Feet on High Places". I haven't read in a long time.
I can't believe it has been 3 months already since mom moved in. Time sure is flying. I don't know what God has planned but I pray I will be ready for His timing.
Monday, October 4, 2010
Thursday, September 16, 2010
Sept 16th Drs, pills and pain
Wow its the 16th of September already. Lots has happned since my last post.
My brother came in on Saturday and that evening mom had another episode of feeling like she was floating away. I had Mike run up and purchase a blood pressure cuff. It has been a wonderful purchase to know what is going on. It was 156 which was high but not as high as the 180's. I think after taking her blood pressure over the past few days that her blood pressure med is too much for her and it was dropping her blood pressure down to the 80's.
OK on the the neurologist story. Her appt was at 5:55pm on Wednesday. We were there for 2 1/2 hours before we saw the dr. Can you believe 2 1/2 hours. I thought her oncologist was bad at an hour. He says the problem is nerve but he can't tell where and with her pain level so high they can't do the normal test to find out where the nerve is pinched. So they scheduled her for a MRI on next Wednesday the 22nd. He gave her a pain med that targets the nerve. Nuerton(?) 300 mg. We gave it to her around 10pm and she really woke up fully at 6:30pm the next day. At 5am she fell out of her bed and hit her head on her night table. I called the drs office at 3:30pm and they said the dr would call her in a new script for 100mg. She took the 100mg last night and this morning and it hasn't really touched the pain. We are going to try 2 100mg pills tonight at bed. They are capsules so we can't cut or divide them. Her follow up appt with the neurologist is on the 24th with the nurse pract. They assured me she does not run 2 hours late.
Guess that is all the updates right now. Next week maybe we will know what is causing her pain.
My brother came in on Saturday and that evening mom had another episode of feeling like she was floating away. I had Mike run up and purchase a blood pressure cuff. It has been a wonderful purchase to know what is going on. It was 156 which was high but not as high as the 180's. I think after taking her blood pressure over the past few days that her blood pressure med is too much for her and it was dropping her blood pressure down to the 80's.
OK on the the neurologist story. Her appt was at 5:55pm on Wednesday. We were there for 2 1/2 hours before we saw the dr. Can you believe 2 1/2 hours. I thought her oncologist was bad at an hour. He says the problem is nerve but he can't tell where and with her pain level so high they can't do the normal test to find out where the nerve is pinched. So they scheduled her for a MRI on next Wednesday the 22nd. He gave her a pain med that targets the nerve. Nuerton(?) 300 mg. We gave it to her around 10pm and she really woke up fully at 6:30pm the next day. At 5am she fell out of her bed and hit her head on her night table. I called the drs office at 3:30pm and they said the dr would call her in a new script for 100mg. She took the 100mg last night and this morning and it hasn't really touched the pain. We are going to try 2 100mg pills tonight at bed. They are capsules so we can't cut or divide them. Her follow up appt with the neurologist is on the 24th with the nurse pract. They assured me she does not run 2 hours late.
Guess that is all the updates right now. Next week maybe we will know what is causing her pain.
Tuesday, September 7, 2010
September 7, MUCH happening
It is hard for me to even post this and debated if I should. Sunday Sept 5th we were watching t.v. and mom bolted up and started saying "I am sorry I have to go, I have to go home, I'm sorry I have to leave." Of course I didn't know what to do. She said she didn't hurt she just had to go. Then she thought she was going to throw up but then said she wanted to go to bed. In the midst of all this I phoned 911 as "what else do you do". Hopefully I have learned NOT to do that again. Her blood pressure was 186/110. The fire guy said oh that is probably her regular blood pressure, of course I told him no where close except when she had her tooth pulled. Well we spent over 4 hours in the ER in which they gave her pain meds and nausea meds which did not help her hand pain at all and then sent her home with a pain med that I told them she couldn't take as she throws it up. They did take an xray of her hand but never even told us what it showed. The one good thing was that the ER dr said he thought her hand pain was probably from a nerve problem.
We arrived home and got settled around 10pm. Mom said she was sure the Lord was taking her home but that she no longer wanted to go to any drs appt she didn't have to and didn't want anymore chemo. I told her that was fine.
Yesteray we were both spent and today it is a little back to our normal. Of course yesterday was a holiday so couldn't call any drs. Today I called her rheum. and asked if they could refer her to a nurologist and they gave me names of 3 drs in their group. I pulled out the yellow pages and it opened to nurologist and this drs name just jumped out at me, thank you God!!! I called them and they could get mom in next Tuesday. I phoned 2 other drs groups the 2nd one said Wednesday or Thursday of next week and the 3rd one said November. So I went with the first. It will be a whole week now.
I phoned the oncologyst and told them that mom no longer wanted chemo. They really want her to come in to the appt. she has Thursday to get the pros and cons of quitting. I am sure this will be an exausting visit emotionally.
She had her blood work today and they said it looked good. I don't know when the rheum. office will call and let us know how her uric acid level was.
I did tell work that there was no way I could work this week and deal with everything. This has been VERY hard for me but I need to let it go right now. My brother is supposed to be in town on Saturday and stay for a week. My husband has been WONDERFUL.
Can you believe I actually felt like baking today and baked 2 pies this evening, a peach cream and peach/raspberry cream. The raspberries are from my garden. While they were cooking I looked out at my back yard garden to see 4 types of birds having a great time including, 2 blue jays that came very close the to the door and other birds bathing in my bird bath. I LOVE Gods nature.
I know that God has all this in His hands I MUST cling to him in everything. I haven't done such a good job at that but He gently reminds me.
We arrived home and got settled around 10pm. Mom said she was sure the Lord was taking her home but that she no longer wanted to go to any drs appt she didn't have to and didn't want anymore chemo. I told her that was fine.
Yesteray we were both spent and today it is a little back to our normal. Of course yesterday was a holiday so couldn't call any drs. Today I called her rheum. and asked if they could refer her to a nurologist and they gave me names of 3 drs in their group. I pulled out the yellow pages and it opened to nurologist and this drs name just jumped out at me, thank you God!!! I called them and they could get mom in next Tuesday. I phoned 2 other drs groups the 2nd one said Wednesday or Thursday of next week and the 3rd one said November. So I went with the first. It will be a whole week now.
I phoned the oncologyst and told them that mom no longer wanted chemo. They really want her to come in to the appt. she has Thursday to get the pros and cons of quitting. I am sure this will be an exausting visit emotionally.
She had her blood work today and they said it looked good. I don't know when the rheum. office will call and let us know how her uric acid level was.
I did tell work that there was no way I could work this week and deal with everything. This has been VERY hard for me but I need to let it go right now. My brother is supposed to be in town on Saturday and stay for a week. My husband has been WONDERFUL.
Can you believe I actually felt like baking today and baked 2 pies this evening, a peach cream and peach/raspberry cream. The raspberries are from my garden. While they were cooking I looked out at my back yard garden to see 4 types of birds having a great time including, 2 blue jays that came very close the to the door and other birds bathing in my bird bath. I LOVE Gods nature.
I know that God has all this in His hands I MUST cling to him in everything. I haven't done such a good job at that but He gently reminds me.
Thursday, September 2, 2010
September 2, drs!!
The home health care nurse came today and this was her last day. She has been so nice and helpful. She was concerned about the pain in moms hand and asked her from 1 to 10 how is the pain. Mom said a 9. She said she would call the rheum. office and ask if they could give her something for pain and we said OK. She called and they said oh the gout in her foot. My, my, my. Then they said why didn't she call her gp. Well her gp referred her to you. my my my. They called me back later and wanted to know if I had made her 2 week follow-up. I told them "you sent me her paper to have blood work done, but how long after she takes her Prednidone can she have her blood work done?" She then replied oh she has to wait at least a week after that. So I said let me pull out the calendar, if she has to wait a week then she can't have her blood work until the 15, then we have to wait for the results from the blood work before we come in right?". She said yes, so then I say "that means the earliest she could come in is the 17th. The lady then says "oh let me see if the dr will call in something for pain". Well they call back and say the dr will call in Loritab which I had already told the nurse when we went in that she threw that up and couldn't take it. So the lady says I will see if the dr will call in something else. She never called back, oh yes and they never did schedule her follow-up appt. She also said she wanted her uric acid blood work done again tomorrow. Now what I don't understand is that she had that done last week on Wednesday and they told me it was not an elevated level but if she is in a gout flair it wouldn't show up but she is still in a flair and they want another uric acid blood work done. my, my, my. I am beginning to think I am Alice in Wonderland. I have to remind myself that God uses all things for good.
Wednesday, September 1, 2010
September 1, pills and more pills
Wow September already.
Chemo went well and with the lowered Taxol it seems to have helped. Mom had stomach pains which has been the one recurring thing but it only lasted for 1 day. The pre-meds did not help with the swelling in her hand, so I called the rheum. on Thursday afternoon. They called me back on Friday and said her blood work did not show gout but they were putting her on prednisone for 12 days and then want new blood work taken again. Don't know when or how long it will take to work but hope it does as she is in a lot of pain.
Pills, pills, pills. So now she has to take a pill 30 minutes before breakfast, one pill before breakfast and 3 pills after breakfast. Then 1 pill after lunch and dinner and 3 pills before bed. The good thing is all refills are up-to-date as of today.
Mom got her blood work done yesterday and her blood work was great!! They did lower her coumidin to 1mg. My brain is on drugs, lol.
My brother called my mom and is planning on being here on the 10th for a week.
Mom has told me and several others that she is not sure she will take the next 2 chemos but has not made a decision. I think she is just tired of being in pain.
Chemo went well and with the lowered Taxol it seems to have helped. Mom had stomach pains which has been the one recurring thing but it only lasted for 1 day. The pre-meds did not help with the swelling in her hand, so I called the rheum. on Thursday afternoon. They called me back on Friday and said her blood work did not show gout but they were putting her on prednisone for 12 days and then want new blood work taken again. Don't know when or how long it will take to work but hope it does as she is in a lot of pain.
Pills, pills, pills. So now she has to take a pill 30 minutes before breakfast, one pill before breakfast and 3 pills after breakfast. Then 1 pill after lunch and dinner and 3 pills before bed. The good thing is all refills are up-to-date as of today.
Mom got her blood work done yesterday and her blood work was great!! They did lower her coumidin to 1mg. My brain is on drugs, lol.
My brother called my mom and is planning on being here on the 10th for a week.
Mom has told me and several others that she is not sure she will take the next 2 chemos but has not made a decision. I think she is just tired of being in pain.
Wednesday, August 25, 2010
August 25 New dr day
Mom went to see the rheumatologyst(?) today. She was nice and thinks it may be gout. Learn new things almost every day. Gout is a form of arthritis, never knew that. If it is gout it means her kidneys are not working which is probably from the chemo. A change of diet will help. No red meat and less carbs,no shell fish and no high fat fish, like salmon and no high frutose corn syrup. Hummm. Interesting.
The pill saga I think has been solved for now. I just called the pharmacy and they had the refill for the 180mgs Diavon but it was on hold. After telling them that the dr made a mistake they call Tricare and they approved it being filled.
Tomorrow is chemo. The dr we saw today is hoping the meds mom has tomorrow will help her hand for at least a week and that will give them time to figure out what is causing the swelling and pain.
I am really starting to slow down. I actually had a very small anxiety attack today on the way to the drs. I praise God I knew what it was and was able to call on Him and take some deep breaths and get through it quickly. I have to hang on to God more and more every day.
The pill saga I think has been solved for now. I just called the pharmacy and they had the refill for the 180mgs Diavon but it was on hold. After telling them that the dr made a mistake they call Tricare and they approved it being filled.
Tomorrow is chemo. The dr we saw today is hoping the meds mom has tomorrow will help her hand for at least a week and that will give them time to figure out what is causing the swelling and pain.
I am really starting to slow down. I actually had a very small anxiety attack today on the way to the drs. I praise God I knew what it was and was able to call on Him and take some deep breaths and get through it quickly. I have to hang on to God more and more every day.
Wednesday, August 18, 2010
Aug 18 The Fun Never Ends
Well the med saga continues. I found out the drs office called the prescriptions into Walgreens instead of CVS. Walgreens filled them so CVS couldn't so CVS had to call them. We picked them up on the way home from the oral surgeon. When I got home one of the pills was the wrong mg and no refills and her sleeping pill was filled with only 15 pills and no refills. I called yesterday to ask what was going on and spoke to the nurse. She was supposed to get everything fixed but never got a call back from them. This is also going to cost an additional $25 to get the right refills. Just DON'T understand why this is so hard.
I phone the oral surgeon first thing Monday and they asked if we could come in right then. So mom didn't get breakfast and we headed out the door. He said he would pull it depending on her coumndin levels. We went in first thing on Tuesday and had the results by 12:30. Her levels were great for getting the tooth pulled. They scheduled it for 8am Wednesday. Mom was none too happy as he was in the Rockledge (about an hour drive) office today which meant we had to get up at 6:45am.
Last night we had our Parents Orientation for work I got home around 9pm. The day was so crazy trying to get moms pills fixed, getting blood work, trying to schedule her tooth pulling and rescheduling her oncologyst visit and getting everything ready for the meeting I was exausted but wound-up when I got home. I "thought" I had taken my sleeping pill. I did some work and went to bed at 11pm, at 2am I think I finally got to sleep. When I got up this morning there sat my sleeping pill??? Am I going crazy or what???
Mom didn't sleep much last night either as she kept checking her clock. Guess she didn't think I would get up on time, lol. We got to the oral surgeon about 8 minutes early and they didn't open the door until 8. We sat there for about 15 minutes before they got her. They took her blood pressure and it was 160/108. They let her sit and watch tv for a while and it finally came down to 140/102 and the dentist said it was OK. God's grace poured down. They had me leave the room and it was only about 15 minutes and she was done. We left the house at 7am and was home at 10am. She has been sleeping off and on. I have been working since I got home and its almost 1pm.
I still haven't heard from the drs office about her meds but just can't deal with that today. At least she has some pills to get her through the next 15 days. I was going to switch to this dr but guess I sure won't now. I only need a dr to refill my sleeping pills right now so don't know what I will do. Guess I could stay with the old dr we left but don't know if he will refill my pills if I don't go in and get my blood work done. Guess I could try and go without them.....
Tomorrow is mom's monthly visit with the oncologyst. Oh forgot that her blood count was back up, yeah.
I phone the oral surgeon first thing Monday and they asked if we could come in right then. So mom didn't get breakfast and we headed out the door. He said he would pull it depending on her coumndin levels. We went in first thing on Tuesday and had the results by 12:30. Her levels were great for getting the tooth pulled. They scheduled it for 8am Wednesday. Mom was none too happy as he was in the Rockledge (about an hour drive) office today which meant we had to get up at 6:45am.
Last night we had our Parents Orientation for work I got home around 9pm. The day was so crazy trying to get moms pills fixed, getting blood work, trying to schedule her tooth pulling and rescheduling her oncologyst visit and getting everything ready for the meeting I was exausted but wound-up when I got home. I "thought" I had taken my sleeping pill. I did some work and went to bed at 11pm, at 2am I think I finally got to sleep. When I got up this morning there sat my sleeping pill??? Am I going crazy or what???
Mom didn't sleep much last night either as she kept checking her clock. Guess she didn't think I would get up on time, lol. We got to the oral surgeon about 8 minutes early and they didn't open the door until 8. We sat there for about 15 minutes before they got her. They took her blood pressure and it was 160/108. They let her sit and watch tv for a while and it finally came down to 140/102 and the dentist said it was OK. God's grace poured down. They had me leave the room and it was only about 15 minutes and she was done. We left the house at 7am and was home at 10am. She has been sleeping off and on. I have been working since I got home and its almost 1pm.
I still haven't heard from the drs office about her meds but just can't deal with that today. At least she has some pills to get her through the next 15 days. I was going to switch to this dr but guess I sure won't now. I only need a dr to refill my sleeping pills right now so don't know what I will do. Guess I could stay with the old dr we left but don't know if he will refill my pills if I don't go in and get my blood work done. Guess I could try and go without them.....
Tomorrow is mom's monthly visit with the oncologyst. Oh forgot that her blood count was back up, yeah.
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