Monday, October 4, 2010

Oct 4th Lots of Updates

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.

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.

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.

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.

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.

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.

Sunday, August 15, 2010

August 15, Birthday tomorrow

Mom had her blood checked Tuesday afternoon and we got the call on Wednesday that her blood count was down to 213 and we needed to up her coumdin to 1.5mgs. She has been VERY tired but the pain in her body has subsided. She has been walking without her walker saying that she is trying to get stronger. I am concerned that she might fall.

My uncle and his wife from S.C. came and visited mom on Wednesday for about 2 hours. She was really tired after that and slept for a while.

Her new gp's office is just as bad as the other drs. I phoned Friday to ask why they hadn't referred her to a rheumitologist(?) yet and they said there was a note in her chart saying I would call when we want referred.I also asked them to call in two refills and they never did. So I have to call them first thing tomorrow. Her pointer finger is beginning to hurt now along with her thumb. I am still not sure its not nureopthy(?). They called back and said she has an appt on the 25th. I called the rheum. office and asked if she could get in sooner as the 26th is her next chemo. They said they would call if they have a cancellation.

This evening she went in to brush her teeth and came out with part of her tooth in a cup. This tooth was causing her problems before she was diagnosed with cancer but hadn't given her any pain since. I called the oncologyist and they said to stop taking the coumdin and call the dentist in the morning. I need to make sure they know she is on coumdin and is taking chemo. I don't know if they will want to see her tomorrow or wait. I am a little concerned about her getting an infection so will let them know about that. Bummer because its her birthday tomorrow.

Thursday, August 5, 2010

August 5

Today was my day for a break down.....

Received a call from the chemo nurse that my mom's INR was high so she does not take her coumadin today and back to 1mg every day. This is different usually after chemo it goes low, weird. Also her white cell count is VERY low. That doesn't usually happen until the 2nd week after chemo. She said it has to be 1500 in order to have chemo and it was 300. Yeah guess it is low. Its funny as I re-read what I just typed and I typed has only been 2 chemos before this so there really isn't a usual is there????

Wednesday, August 4, 2010

August 4 Blood work

Today seemed to be uneventful and mom said she was a little better but asked for a pain pill this morning. We went to the hospital for weekly blood and she said she didn't feel good. She has not had to take a nausea pill for a couple of days and I didn't even think to bring one. One of the pink ladies went to get something in case she threw up and took forever. The check-in lady went and got a plastic tub. The pink lady finally came back with one of those kidney shaped spit things. Why do people think you can throw up in one of those little things. She did OK and didn't throw up but she had said she wanted a hamburger when we left home and just wanted to come home after that. She said she wanted to go to bed so helped her and then gave her a nausea pill.

It has been a week since chemo and she has not made an upturn yet. Guess poision in your systems ain't such a good thing.

A little side note. While we were at the hospital I don't know if someone died or was hurt bad but a lot of young people kept coming in and everyone was crying. When I went to get the car I could hardly park at the front to go in and get mom. As we were walking out a police man came to talk to the mom/wife. I think it was because they were all smoking right there in drop off and pick up. One of the younger ladies was cussing up a storm but the mom/wife was saying to her its just the rules. Boy that was a fun exit. Just a reminder that we NEVER know if we will have a tomorrow. Maybe someone can tell me what "I don't give a .......!" really means.

Tuesday, August 3, 2010

August 3

Update on gp. They called yesterday and said they wanted to send my mom to a reumatalogist(?) for her thumb. Right now with everything else going on she doesn't want to go to another new dr. That might change as she starts feeling better. She is still in pain throughout her whole body. Yesterday she said even her scalp hurt. She is taking pain meds but that of course causes other problems.

Monday, August 2, 2010

August 2

Yeah for a little rain. The birds and butterflys sure love it.

It amazes me how people turn their heads at the truth. I had something happen today that just reminded me that people don't want the truth. They want to cover it up, make pretend that it is not looking them in the face. I heard someone talking the other day about being polictically correct. Its so bad that people don't even want to call a pot hole in the road a pot hole but something like concerete stress fracture. That is what they do with God's word the real Truth. God forgive us!!! Forgive me.

Mom is still in pain, she said today even her scalp hurts. I spoke with the chemo nurse and she said the more chemo she has the more side effects she will feel and the longer they will last.

Sunday, August 1, 2010

August 1

Thursday July 29th was the 3rd chemo and it went OK. When mom got home she had quite a few problems but then was OK. She usually has pain in her stomach muscles by the 3rd day but this time it started right away. Today she said she is having pain in her legs. If she still has pain tomorrow I will call the chemo nurse. She hasn't gotten sick this time but trying to keep up with the nausea pills.

Forgot to blog in the last blog that we changed drs. It was OK but spent ALOT of time waiting in the room. They xrayed her thumb and it is not broken but has lots of arthritis. They gave her some meds but they didn't help at all with the pain. The HH nurse called and let the dr know that they weren't helping. When the drs office called they said she could take the pills 3 times a day. I asked them why she would take the pills 3 times a day when they didn't help the pain and just made her sleep. I have decided it REALLY is hard to find a good drs office. Drs offices are businesses now and they are about making money. How sad. We really have lost alot of compassion in this country when it comes to medicine.

Tuesday, July 27, 2010

July 27

Time sure flys!!! Things here have been great. I have been working more as the beginning of school and sports gets closer.

My mom is doing WONDERFUL. She gets up and generally makes her bed and gets dressed every day. We have been walking almost every night around 7:45, after the sun goes down. Gods grace has been poured down on us. Thank you for all your prayers!!

Today a friend is bringing lunch over and then we will go get blood work done. They will be checking her CA125 today so will have something to compare with the last one I don't know if anything will be different. They say if your CA125 is above 35 that you have cancer. Her CA125 was only 17 a month agao so hummm will this tell us anything???

Exciting news!! My nephew wants to be baptized!!! Isn't that great. Please include him in your prayers. He will be going to Az to attend college in approx. 2 weeks. I pray he will find a church family and grow, grow, grow.

Mike and John come home from Ohio tomorrow so that will be nice to have them here with chemo.

I have realized that with chemo nothing is set in stone and pray that this next chemo will be OK. Moms hair keeps slowly falling out and mom is getting anxious about it. I purchased her a scarf but she doesn't use it. The other day she mentioned she wanted a perm......hummmm $45 for something that is falling out. She really doesn't even have enough hair for a perm.

Sunday, July 18, 2010

July 18, 2010

Wow can't believe it has been 8 days since I blogged.

Lets see if I can even remember what all has happened. My mom has actually been doing very well since I last wrote. Her white cell count has been VERY low again which happens the 2nd week after chemo but it hasn't seemed to affect her much this time around.

My brother came into town on the 13th. Everything but a dresser has been either moved, taken back, sold, given away, moved into storage or moved to my place. I must say my house is FILLED to the brim as is my mothers room.

God's grace has abounded in our lives!! God has shown me over and over that His timing is perfect. I received the letter from the dr's office on the 9th, saying mom could not stay by herself. I took it to the apartment complex and they said they would release her the end of the month no additional rent. WOW!! Thank you God. I also received the paperwork to get a handicapped parking permit and got taken care of this past week.

My brother leaves tomorrow afternoon and Tuesday is the monthly appt with the oncologist. We have an appt with a new dr on Tuesday. Most of you know Dr. Weldon. He is an internal medicine dr and I hope this all works well. Her P.T. is finished but the home health care nursing is being extended for another 60 days.

Mom has been taking walks outside the past couple of days so she is exercising right now.

I think I have thought of everything that has happened and if I haven't it must not be important.

Saturday, July 10, 2010

July 10

Today started out very bad, mom said she wanted a nausea pill around 10am as she had thrown up around 11pm last night. She never called me and I didn't hear it on the monitor. The morning was filled with throwing up and other problems. Then around 4pm things turned around. I was really worried about her getting dehydrated. I had Mike go and buy some ginger ale and gave her some and a couple of crackers. Around 5pm she wanted some watermelon. She got up and we watched the last half of the movie "The Tooth Fairy". Around 6:30pm I asked if she wanted to take a walk so we did that and then read some of Hinds Feet on High Places. I asked her if she wanted anything and she said she wanted a cinnamon roll so I gave her a nausea pill and then fixed the rolls. Its 7:35pm and she is still laying on the couch watching t.v. This is the longest she has been up in over a week!!

Just when you think things are on the down slide God steps in and pours his grace out abundantly.

Friday, July 9, 2010

July 9, Day 78

Yesterday was a much better day!! We started out the day with a nausea pill and she ate a great breakfast and all of it. She had PT about 11:30 and did great and even took a walk outside. She slept after that until around 2:30 and then I took some watermelon in to her to eat. She slept again until about 5pm and then wanted spegetti. I gave her a nausea pill before that and she did great!!

We did one day of our bible study around 7pm and at 9pm she took her pills and was out until around 10am this morning and asked for a nausea pill.

I did call the drs office yesterday as I had a call at 8:30am that I missed. I rescheduled her appt for the 20th and they said to take her off her coumdin for 3 days and then lower her dose to 2mg. Of course I didn't think I have enough of her old 1mg left so they called in 2mg. I started going through her huge bag of meds that says DO NOT TAKE and found some 4mg which I could break in half. It is a good thing this med is a very inexpensive med as much as they change it.

Her blood pressure has been low this past week, 100/70. The nurse said it could be because she is not drinking enough. I will have to buy a blood pressure cuff so Mike can start taking her blood pressure. Will have to weigh her today. Last week she was 113. She has lost approx 9lbs since she has been out of the hospital, not good.

Thanks for reading my blogs and keeping us in your prayers!!! Keo

Wednesday, July 7, 2010

July 7

This day didn't start out too fun. My mom was sick this morning. Then I was sitting at the computer, coughed, and my back went out. It is not out out, at least I can get up gingerly and walk but have to be VERY careful or I will be out and not able to function. After that a friend brought me a birthday cake which was WONDERFUL and that is what we had for brunch.

In the afternoon my mom had a bad accident. I was trying to get her cleaned up and the bathroom cleaned up which would have been funny if my back had not hurt so bad. I was down on the floor and couldn't get up to had to crawl to the bath tub pull myself up and then get up from there.

My WONDERFUL husband stopped and got Carabbas for dinner and had a nice dinner together. My mom was supposed to get her blood work done yesterday but felt so yucky that we waited for today. She felt so bad we didn't got until around 3:30. Mike drove us since I couldn't get her walk in and out of the car but at least that is done for the week. She is supposed to have a drs appt on Friday but am going to call tomorrow and see if I can reschedule for next week with my back.

Mom got sick again after getting back from the blood work and gave her another nausea pill. Its 8pm and just gave her some applesauce and crackers to eat. I hope she has a good night.

Tuesday, July 6, 2010

July 6, 2010

Sunday Charlene came over while I went home for an hour and got mom's bed made and some picts hung.

Yesterday was move day. Boy there was a lot more to move than I thought. Isn't that the way life is. We think we have it under control and then we finally figure out we don't. God is always in control and I am soooo glad all I have to do is give everything to Him and seek His will. Mike and John came over and took some things like food, clothes and some picts. She likes her room but of course its not her own place. We do like independence don't we.

We were going to get her blood work done today but PT came at about 11:45 and she was tired so we will go tomorrow. Nurse comes between 3-4 today. Her blood pressure was a little low today. I have to look at her notes to remember what her blood pressure did last time. I have realized I have no memory any more. As I told the pt guy, I can react but don't ask me to think.

This will be a busy week as tomorrow will be blood work and Friday is drs apt. She has to see the oncologist between each chemo. It was scheduled for the 16th but got changed to the 9th.

This morning I cleaned the kitchen floor and went out to my garden for a few minutes while she was doing pt. Boy I sure miss working in my garden but now I am tired....Hoping I can get back into somewhat of a routine.

Mom and I have been doing a bible study Seeking Him by Nancy Demoss. It has been a little bit of reading and a video each week. We are still reading Hinds Feet on High Places and a little devotional.

Friday, July 2, 2010

July 2 Friday 2010 Day 71

Lots since I last blogged. Hard to get an internet connection.

Things with her gp went from bad to worse. They would not call in a prescription and then the office told Home Health Care that the dr would not sign off the paperwork because she hadn't been there in 60 days. WHAT!! I had just talked to the office that day.

We did her blood work on Tuesday. Wednesday I got a call from the chemo nurse and they increased her coumdin to 2.5mg now.

Yesterday was a LONG day. We left the house at 10am and got home at 4pm. Her appt was at 10:30am but didn't get started until around 11am. When we arrived home she went right to bed and got up around 7:30pm and ate a little soup that someone dropped off and then went to bed.

She was up appox. 10 times last night so neither of us got much sleep. At 8am I finally got up but am sort of in walking sleep mode.

They never got the paperwork for the handicapped permit. At one point I decided to go home as I could not get on the wifi at McDonalds and really needed to get some work done. While I was there I grabbed the copies I made of the paperwork and took it to the office. I couldn't make a copy of the copy as the printer is at my moms so hope they don't lose it.

I also asked the nurse if they could write a letter stating that she can not live alone and they were more than happy to do that. I just received a call while typing this saying that the letter is ready and they will be mailing it today. We will see what the apt managent is willing to do.

Last time mom had chemo she began getting sick on the 2nd day after the chemo so I am planning on giving her a nauseu pill tonight and then every 12 hours for a couple of days to see if that helps any.

My brother is supposed to fly in on the 14th and my mom is REALLY looking forward to that.

Sunday, June 27, 2010


Friday morning I decided to re-do the wallpaper border in the room we are fixing up for my mom. I thought I will drive to Lowe's. They don't sell wallpaper border any more and neither does Home Depot, but at lass Wal-mart does. I know this was God as I had the old down and the new up in 1 1/2 hours. I also bought some nice curtains so everything is ready for the bed and dresser to be delivered on July 2.

The HH nurse came around 11am and did a cath on mom. Guess there was no infection since we never received a call from the drs office. I stayed so my aunt could go to Walmart with my cousin. After she got home I went back home and vacuumed the bedroom and packed.

When I got to moms I video taped a little of my aunt, mom and cousin. I moved the bed my aunt was sleeping on into the living room with the help of my cousin and my aunt was out at 7pm. She got up at 4am to get ready. Mom woke up at 5:20am to use the potty and we all said good bye.

Saturday was a quiet day of figuring out schedules and what food she needed. My LOVING husband grocery shopped for me.

We did take a walk outside yesterday and today. Today was very nice when we went out. Overcast and cool breeze. Yesterday we listened to last Sunday's Sermon on the internet. The internet does have some great up sides.

Yesterday evening I was bitten by a red ant in the bathroom and discovered many ants but couldn't figure out where they were coming from. I also discovered some in the entry way and kitchen. I was bitten 4 times. I emptied the garbage around 9pm and had placed the bag by the door to take out in the morning. A while latter there were masses of ants on the bag so I had to kill all of them and take the garbage out. This morning I was looking through some stuff in my moms bedroom and discovered ants covering an extra pillow and quilt that she had in a corner. I had to take the quilt outside and try to get as many of the ants off as possible and threw it in the washer. She had several boxes of picts and nick nacks that had not been unpacked so had to go through all of them and get rid of the boxes as there were aunts in the also!!

My wonderful husband fixed chili and brought it over for lunch today along with the bug spray. I sprayed every room and outside the doors and windows. Have not seen a moving creature since.

It was fun going through many pictures today with my mom. Trying to get them all sorted and labeled.

Thursday, June 24, 2010

Day 63 update

I didn't go to sleep until almost midnight last night. You know how you get started on a project and forget what time it is. Whenever I get to sleep late I don't know why but I get up earlier. It was 7am and I was wide awake I decided since I was awake I would go shopping at Walmart. I needed some groceries and a window cover for our back room. We have blinds but the are outside mount and will not work now that the bed will be against them unless we want to continue to hit our heads.

The more and more I thought about the way we were treated on the phone yesterday by the drs office I decided to go in around 10am and find out who I spoke with and what the problem was. I found out we were talking with the receptionist and I asked to speak with her she came to the window and I asked her why she was the way she was on the phone and that my mom has stage IV cancer and we were asking for a smaller dose of meds not a larger one. She stated we wanted to know if we could break it in half. I said no that is not what we asked and the nurse and I were both there. And why did she keep saying to take her off of it? Then she said there wasn't even a smaller dose but then she looked it up and said there was. I said why would she have problems with her upper back if she was constipated which is what she said yesterday. I told her we never said she had lower back pain and she said yes you do. I walked out of there in tears. Another receptionist stopped me at the door and apologized and said they would call in another dose and told her I would never be speaking with that receptionist again and that I would be calling the home health care nurse and see if she could write anything. I called the HH nurse and she said she probably could not write anything but had problems with this receiptionst before. The other nurse called a minute ago and said they had called in the smaller dose of meds. I am really not sure that I want to continue with this dr. he is my personal gp also. The dr seems kind a compassionate but I did find out that he was standing there the whole time this conversation was going on so he knew how she was talking on the phone!!!

I just called my aunt and found out my mom wanted to go to the bathroom around 10:30pm. My aunt told her to call and she did this time but after she got up with the walker she feel to her knees and couldn't get up and my aunt couldn't help her either. My mom said can't I just lay here. I guess finally my aunt helped her to get up.

Am I ready to go stay there.........Please pray that I will have what is needed and if I don't then God will provide.

I did order her a bed and dresser to be delivered at my house on the 2nd.

Wednesday, June 23, 2010

Day 62 update

Today is Wednesay Jun 23. Yesterday the nurse came and couldn't believe how mom was up down up down up down. She called the dr and asked if he could call something in. While I was out looking for beds and dressers the nurse called and said they were going to call in something. I stopped to get mom lunch, drop it off and went back to CVS to pick up the new prescription and get bystolic refilled. I waited and waited I paid for the 2 scripts and began to drive palm bay road. I don't know what made me check but one of the scripts was wrong and it wasn't the new script the dr had called in. I drove back and they said they had nothing called in. I went back out the the hot car to call the drs office. They put me on hold and then I got disconnected. When I called back they said we called that in. I went back into to CVS and they said we now have some messages so we will check and see. So the drs office probably called it in when I was on hold with them.

We I got back to moms place I redid her pill box again and said she could take a while zanax(?) She said what will happend if I keel over, I told her to give me a call, lol. She took one about 4pm and it worked. Of course it made her sleepy. She had to be woke up to eat dinner and take her pills and then back to bed.

This morning a got a call around 9:30am saying she fell at 4am this morning. She didn't call my aunt and fell into the doorway with her walk and skinned her forehead and gave herself a black eye. I told her to call the home health care nurse and she came around 4pm. I asked if they made a smalled dose of zanax and she said yes and would ask the drs office as she had to report the fall. Well the woman we talked with was horrible and kept saying just take her off the zanax and would then said cut it in half which we had already done and still was too much so the drs office said cut in half again. How bizzare!!! I was NOT happy with this woman and will be taking with them when I take in her urine sample tomorrow!

My aunt leave early Saturday so that will be my move in time. Her next checmo is July 1 and hoping to move back home with her on July 7th, my birthday. My brother is supposed to be flying in on the 13th and she has a drs appt on the 15th. Too much going on that week.

Will update more later.

Monday, June 21, 2010

Monday June 21st drs visit

Today we had an appt with mom's GP. This was her first visit with him since before all this all started. He changed her dose on one of her blood pressure meds and took her off another so a little fewer pills, lol. While she was in the office she said her back hurt so bad she was in tears. I personally think it is muscle spasms and the dr felt where she said it hurt and said it is most likely muscle problems so gave her a muscle relaxer, Soma, and another pain pill. Hopefully with the muscle relaxer she will sleep better through the night.

Tomorrow is blood work and hoping her white cell count will be up and we won't have to change her coumdin again.

Friday, June 18, 2010

Friday 6/18 Changes to Chemo

I took my mom for her follow-up to the surgeons today. We were supposed to see the nurse but the dr was in. God's timing!! She could not sit still for over 5 seconds, literally. She would sit down and I couldn't even count to 5 before she was up and around. While talking with the dr he said it could be the nausea meds. Boy as I said before meds can be difficult. He was going to cut it in half but decided to change it. I am hoping it will get out of her system fast. He also looked at her port which is still very bruised. At first he said he would have to use her vein for chemo and then decided to put it off for a week and then decided to do her chemo every 4 weeks instead of every 3. If she decides to do all 5 chemos it will be done now in November instead of September. He is really a wonderful dr to talk to and very compassionate.

I got a copy of her blood work and her INR was 1.6 and should be at 2.0. Her white blood count should be between 3.9 and 11.20 and her's was 2.74. Her neutrophils ( white blood cells in the bone marrow were 9.0 and should be 40-77. She seemed to have a little more energy today so maybe it is coming up.

I took her to get her hair cut yesterday and now it seems to be falling out. We will see if it all falls out or not. While I was with her it was literally falling out as she walked.

I bought a scale yesterday as I some how can't remember to bring my from home every week. She has lost 2 lbs in the past week. The scale at home showed the same weight as the drs office so that was good.

I have to take her to her gp Monday as they sent all the paperwork for the home health care to his office and he hasn't seen her for almost 8 weeks.

It has been so hot here. In the 90's with a heat index of over 100 every day.

Unless the Lord changes our plans my aunt will be leaving in July and I will stay at mos place until John goes to FIT and then she will come here. It will be way to hard for me to live with her for any length of time as I will have to be there 24/7 unless I call someone to come help. That is where the new website I found will come in handy!!!

Wednesday, June 16, 2010

Wednesday update

I called the drs office at 8:30am and I have to increase her coumdin from 1.5 to 2mg and they said her white blood count was low so wash hands and no visits from anyone that is sick. If it is still low next week there may not be chemo.

Her PT is at 3pm today so will go over a little earlier. Finally remembered to get her a pillow of memory foam for laying on the couch, hope it works, and a t.v. remote that doesn't lose the settings when they drop it and the batteries fall out, lol.

Tuesday, June 15, 2010

Day 54 updates

Saturday a new home health care nurse came to visit. She told us that mom should take a shower and the nurse Friday said no way. I asked what we should do since there were two different opinions. She said to call the dr. The Saturday nurse also said to take her stomach meds 1 hour in the morning before she eats and the bottle said take with or without food. Her regular nurse came Monday and I asked her opinion and she said at least 1/2 hour before food. Now comes the Boniva which she takes once a month and that is supposed to be 1 hr before eating in the morning. So since both pills can't be taken at the same time today the stomach pill had to be taken before lunch or dinner. Boy meds can be hard.

We had to get blood work done today. We went to the hospital and had to check in but they are putting her on a weekly schedule so hopefully we won't have to check in every time now. Her arms are still so bruised and puffy that they had to take it out of her hand. They had to stick her twice which wasn't good but I did get them to NOT put tape on it as part of her arm problems were trying to get the tape off.

I went grocery/stuff shopping twice today once before I picked her up and once after. Hopefully we are pretty much done now. I did purchase one of those soap dispensers that is automatic and it works great. It will be much better in the bathroom and some hand sanitizer. This may seem gross to some but if you are on the toilet and wipe and then grab the walker, go to the sink wash your hands and then turn around and grab the walker again there are germs all over the walker. So I told her, after you wash your hands put a little hand sanitizer on the walker handles.

My aunt told me that she got up in the middle of the night and didn't turn on the light so my aunt didn't wake up and that she fell but fell into the wall. Praise God!! I pray this helps her remember to turn on the light so my aunt can help her.

Before she came home from the hospital the first time we took the wheels off her bed so it would be lower but today she said it was still too high. I had my aunt call my cousins husband to come take the frame completely off and it is much better. Her mattress is one of those very thick ones.

Well I think we finally have things set in her house and she has some new comfortable clothes and plenty of food for a while.

I came home as was exhausted and tried to take a nap. Just as I was falling asleep the PT guy called to schedule tomorrow and then I was awake. I went outside to work a bit in my garden and when I got back in the drs office had called at 5:30pm. They said they got her blood work back and some of the levels were off and needed to ask some questions. When I called back the answering machine said the office closed at 5pm so I couldn't get in touch with anyone. They are opened tomorrow at 8:30am so will call first thing. Mom called and said they called her and said her clotting level was off and asked if she had an infection so not looking forward to the call tomorrow.

Today it really hit me as to how weak she is getting. It really took everything to get her to the hospital to get her blood work. It even went through my mind that if this continues she will be in a wheel chair soon........ She has been able to get her socks and shoes on by herself but couldn't today......

Friday, June 11, 2010

2nd blog today

Since I last blogged life has kind of turned upside down. I am praying about what to do. I know my mom can not be by herself and I don't know if I should move her here, move her here and John to her apt. or to move over there. I covet your prayers!! I REALLY do want God's will in this and I find myself saying what is easier for me.

I decided to google cancer caregivers and found this cool website which I thought for sure there would be something out there before and couldn't find it when I was scheduling people to come sit with my mom at the hosptial. I pray it will help someone.

Day 50 going crazy and updates

Oh man, I tried to start this post and kept weirding out on the dates until I figured out I was looking at the calendar for May.

Wednesday we went to our chemo education day. Charlene went with us. My aunt wanted to go but it was just too overwhelming for me to deal with that too. We didn't really learn anything new. One great thing out of this appt. was that the nurse told my mom everything we have been trying to tell her and she had to sign papers saying she had been told about everything. She also enforced what I have been telling her about taking in fluids but now we have an amount 64oz each day.

She has to have blood drawn every week to check her INR (blood clotting), CBC (, BMP ( and then every 3 weeks they add CA 125 ( A decreasing level of CA 125 means that chemo is working.

We have to see the dr or nurse between every chemo visit. Our next scheduled visit is the 18th. Her next chemo has been scheduled for June 24th. It will be a long visit as we have to drive 20 minutes to get there. The chemo nurse already told me they will probably be behind on appts but still wants her there at 10am.

As I am typing this I received a call today from my aunt. She just ate and threw it all up. I told them to call the dr as she has thrown up everyday since she has been home.

The home health care nurse came today about 3pm and I arrived just as she was beginning to get all the info. She said she was glad I arrived as neither of them could remember why she went into the hospital? She was VERY good and through. Her blood pressure is a little on the low side for her and when she stands up it drops 10. Her port is still a little swollen and her tail bone is getting bad again so the nurse said to use her cream again. I am glad the nurse will be coming again tomorrow to check her blood pressure. The nurse wants me to bring my scale once a week to weigh her to see if she is losing anything.

I went clothes shopping for her after I left to get her some t-shirt type tops to try as with her cotton ones she keeps pulling at it where the port is. I hope they work. She needs comfortable clothes for chemo and for being at home instead of wearing her nightgown and robe all the time.

Yesterday I stopped by and washed her hair. It is beginning to fall out. The nurse asked her how she felt about that and she said there are worse things.

Thanks for all your prayers!!! We need them!

Tuesday, June 8, 2010

Day 46 Drs Appt tomorrow

Saturday was a BAD day. Mom threw up before I got in at around 9:30am. They dr had ordered a cough medicine which she took and promptly came back up. Not a good day with the nurses either. She had to go to the bathroom around 10:30. We waited and waited and finally I helped her go on the bedside commode. After she was all done they came in to help her. I went to wash my hands and heard her call my name and I knew what was coming. I grabbed the garbage can as there was nothing else there and she threw up and threw up. While she was doing that I called the nurse and told them what was happening. I waited and waited. I finally went to the desk and asked for a basin so she wouldn't have to throw up in the nasty trash can any more. The CNA came in to bring a basin while I went and got a wash cloth to get wet. I asked her to empty the trash and she just said the nurse would be in. We waited another 10 minutes before the nurse ever came in with something to give her for nausea. She put the garbage can back by her bed and I told her there was vomit in it. She spent several seconds trying to see if it was really there and said didn't the CNA empty it. I assured her she did not. So she finally emptied it.

A while later mom said her stomach really hurt so they gave her a pill pain med. Doesn't make sense to me since she had already thrown up twice. Praise God it stayed down.

They came in and said they were transferring her back to the 4th floor which they did at dinner time, 5pm. When she got to the 4th floor I asked if they had a tray for her, they brought in bar-b-que chicken. I told them she had been sick most of the day so they brought her soup, applesauce and jello. Charlene stayed with her that evening and helped her get some dinner down. It ended up being a 9 hour day.

Vacation was short we left around 9am Sunday. We went to Ft Myers, visited Sanibel Island, laid at the pool and was home by 3pm today, Tuesday.

Story goes Dr came in Sunday morning said port was leaking too much, took her off the IV blood thinner and checked her INR. It was 1.9 so released her. Not sure of the timing as they didn't call me. I found out Sunday evening when I phoned mom on her cell and she told me she got home about 5pm. Thank the Lord for Charlene!! She got her home got her pain and nausea meds. Guess she threw up Sunday evening too.

I talked with mom today 3:30pm and she said her follow up with dr is tomorrow at 10:30am. We are supposed to talk with the chemo nurse for a good while about chemo. Hummmm not like we haven't been through it once already. Because this dr doesn't usually do chemo in the hospital I think I need to talk with them about giving chemo info to their patients before chemo. Things seem to be backwards right now. The nurse at the hospital on Saturday sure didn't know what the side effects of chemo were or if anything she was going through was from the chemo.

Mom said she had pain and tried to take a pain pill and threw it up. I told her she either needs to take them with meals or after she had taken her nausea medicine. I spoke with her again around 6pm and she had eaten a little bit but didn't try to take another pain pill. She is NOT drinking or eating enough. We will have to discuss this with the nurse tomorrow, not good. Everything I had read says you MUST drink a lot or the chemo will really wreak havoc on your kidneys.

More to come...........

Monday, June 7, 2010

June 7th Already!! Will post more later just wanted to update you that mom came home yesterday. I am on the west coast for a quick 2 night stay. It is HOT here. Reminds me of my anniversary trip to Vegas 100.

Friday, June 4, 2010

Friday Day 42 Rest Day

When I arrived home last night I decided to do some searching on chemo scarves and caps. Couldn't find an on line pattern I liked but found a site that showed a McCalls pattern that they said was the best for caps and scarves. I couldn't find my JoAnns flyer but knew that McCall patterns were or had been on sale. I looked up JoAnns on line and they were on sale NOW. I stopped at JoAnns this morning on my way to the hospital and they actually had it in stock. Mom says she is NOT losing her hair. I told her fine then I won't sew anything until she does.

I got to the hospital around 10:30 and left around 3:30. She slept most of the day. I went out at lunch and of course the drs nurse came while I was gone :( Guess she didn't say much. They are waiting for her INR to level out before they release her. Her blood pressure has still been high and she really looked flushed today. She was also very cold all day. I should try and take in a real blanket tomorrow.

They changed the dressing on the port today and it was still swollen. Before I left I had the nurse look at it and she said oh yeah the drs nurse said to put ice on it. That was at noon and it was 3:30! She came back in with a glove filled with ice.

They removed the arm I.V. and put them in the port. I am glad I decided to fix the other robe I bought for her. It snaps up the front and then I slit the sleeves and put velcro in them. Even thought she doesn't have the arm IV I was able to put the port tubing into the velcro so it doesn't pull on her port. She still has the fluids and heprin.

The floor nurse gave me a book called "Understanding Chemotherapy". It was actually pretty good and gave me info I had never heard before.

Thursday, June 3, 2010

Day 41 port and chemo finished

Yesterday I arrived at the hospital around 3pm. I asked the nurse on the floor if she was scheduled for chemo the next day and she said no orders had been written. We thought she would come back to the same room and then the next day they would transfer her to the cancer floor for chemo.

They didn't take her to O.R. prep until 4:30pm. Her surgery was scheduled at 5pm but didn't start until after 7pm.

While we were waiting in O.R. prep her chart was there and the nurse said I could look at it so we read over the surgery notes again and my husband and friend verified what I thought about things being said in the notes that were not passed on to us.

The oncologist nurse came in while we were waiting and said she would write the orders for her to have the chemo done the next day and would call the cancer floor to see if they had a bed so she could go directly there after surgery and then she wouldn't have to wait the next day and possibly not get the chemo right away.

After she went into surgery we had to go get all her things from her old room and tried to take them to her new room but it wasn't ready so we had to take them to the surgerical waiting room and wait and wait. The surgery went well but she didn't get into her room until 8:45pm.

Because she hadn't had her meds since the morning before her blood pressure was 176/98.

I asked before we left to see if she was having chemo for sure the next day. They told us yes but didn't know when it would start.

I got there this morning around 8:30am. They didn't get the chemo started until 11:45am as they had to get all her meds which took a while and then they gave her all the pre meds, benadryl, pepcid, steriods and a med for nausea.

They started the 1st chemo slow, Paclitaxel, This was the worse of the two. Her blood pressure was up and down but she did VERY well with the chemo. After 2 1/2 hours she said to me "when are they coming to get me". I asked her what she meant and she said when are they coming to get me to take me to chemo. I told her she had already been taking it 2 1/2 hours. Her eyes got so big it was funny. It took almost 3 hours for the taxel. Then they flushed for almost an hour before the next chemo drug carboplatin, This one went fast around an hour and then she was done.

She slept through much of the 2 chemos and then was hungry. She really doesn't like hosptial food but it was REALLY storming today so couldn't go get something out.

We are hoping they will release her Saturday. They put her back onto her coumdin today so she can get that level back where it should be.

Wednesday, June 2, 2010

Day 40 changes changes

I was heading out to the hospital when I received a call that moms 11:45am surgery was not switched to 5pm!! She can't eat or drink until after surgery. Why would they do that to an 80 year old woman. This also means that she will be off blood thinners way longer than she should.

Tuesday, June 1, 2010

Day 39 Surgery tomorrow.

Funny, thought I had published this but didn't. Hummmm mind going....

Interesting how the every 2 day post has been happening now. I am so tired right now and almost waited until tomorrow to post.

Long past two days of pretty much sitting in the hospital, taking walks and a couple of meal runs when the meals are gross.

Mom has been coughing a lot while in her room and I didn't think the air conditioner was working quite right. I looked closely at it today and could not believe the filth in the system. It took me a while just to get the top lair of crude and dust off the top and told the nurse twice I wanted maintaince to come in and clean the inside out. When he got done there was big clumps of dust all over the floor and even in the bathroom so not sure what he cleaned in there. Mom had on black socks and when she walked into the bathroom they were covered in dust. It still doesn't work properly and and no off switch so you have to listed to the thing run no mattr what

The nurses kept telling us the surgery tomorrow will probably be late, around 3. I really whated to know what the scheduled time was before I left and found out is it 11:45am. Bummer, was thinking I could get some things done in the morning but no such. At least she won't be off the coumndin for as long and will be to eat sooner. She can't have anything to eat or drink after 12am. Found out everything tends to change in the hosptial. Hoping to find out when they will start chemo on Thursday. They have to mover her to the 8th floor which is the cancer floor and she may or may not come back to the 4th floor that day.

Sunday, May 30, 2010

Day 37 Sunday

The hospital called at 11:30 to say mom's room was ready. I was surprised that they actually called. Of course the lady I spoke with said to check in at the heart center as it is a holiday weekend. After I got mom inside and found a place to park they told me we had to go through the emergency room. They did take her there in a wheel chair but I had to walk carrying her walker.

While we were waiting I was able to read some of the report from the surgery and now I really want to get a copy. It really said a lot of things that we had not heard before. It said that the dr told us about hospice which he did not. I think from reading the report that there was more invasive surgery than we were told about also.

She is back on the same floor and we knew all the nurses, CNA's, food delivery and cleaning ladies. Kind of funny it is nice that there are no male workers there.

I spoke with the nurse today and she stated that when they do her chemo they will move her to the 8th floor and then back to the 4th either that day or the next. We are not sure when the surgery for the port will be on Wednesday. We will probably find out on Tuesday as tomorrow is Memorial Day.

I spent a couple of hours with her today and we took 2 walks. The nurse told her she really needed to get up and around. Tomorrow we will try and take a walk every 2 hours.

I bought her a snap up robe and slit the sleeves and put in velcro so she can wear it instead of those lovely hospital gowns. Don't know if she will like the velcro or not. If not then I will buy the snap tape and put snaps in instead. I don't know why I didn't think of this sooner. If everything goes as planned she will be in the hospital for at least another 5 days so at least it will be nice for that short time.

Glory to God who is in control of ALL!!

Friday, May 28, 2010

Day 35 God is in control

This morning I was able to sit outside and read the scriptures!! Such a hot and beautiful day. I was looking at the butterfly tree that had been over 10 ft tall but froze to the ground this winter. It is really starting to grown back. But what is interesting is there has been a plant growing next to it. I wasn't sure what it was as the trunk is so big. I figured it had to be a weed to be so big but decided to let it grow. As it has grown I realized it is a sunflower. The leaves are huge and it is so healthy. I have NEVER grown a sunflower that has done this well. I realized that the seed for this huge flower had to have been carried by a bird or animal when I grew my puny sunflowers last year. This beautiful huge sunflower would not be there if I had not planted the seed, the animal had not carried it to my large bush and bush had not died. Hummm God is so awesome. We NEVER know what our actions will produce.

I Corn 3:6 I planted, Apollos watered, but God was causing the growth. So then neither the one who plants nor the one who waters is anything, but God who causes the growth. Now he who plants and he who waters are one: but each will receive his own reward according to his own labor. For we are God's fellow workers; you are God's field, God's building.

I planted a seed but had NOTHING to do with what was produced.

Prayer for tomorrow is that God will be glorified in all that takes place. Do I really beleive that what I believe is really real?? Let my actions show I really believe.

Wednesday, May 26, 2010

Day 33 Always a Dr to call or visit

Wednesday already!! Since my mom is not supposed to check into the hospital until Saturday I phoned her cardiologist and asked if I could bring her in to get her INR checked and they said sure! I was a little hesitant as Wednesday's at the cardiologist is usually crazy as that is the day they do all their stress tests. Well glory there was no one there as the dr is in France of all places so it only took a few minutes to get her checked. It was 1.9 which is low and what I figured. They called today and said to put her on 1.5mg of coumdin instead of the 1mg which the rehab had her on.

I phoned her gp's office to see if the dr. wanted to see her before she goes into the hospital and the receptionist said "I don't think so since she has been in the hospital and rehab". I asked her to please ask the dr. I surely don't want the receptionist making that decision. She phoned back a little while later saying the dr wanted to know if her INR had been checked. I told her I had just been in and then she stated that her file has nothing in it from any of the hospitals, rehab, oncologist, gyn or cardiologist. So my afternoon has included trying to call all these drs and getting them to fax all their info to her gp. I thought having all the health info on the computer now was supposed to solve all these types of problems, NOT.

Its 2:51pm and no word from the oncologist's office to confirm checking into the hospital on Saturday....

Tuesday, May 25, 2010

Day 32 Always something new to learn

Did you know? The operating room is only open to emergency surgeries on Memorial Day. Well now you know and so do I.

I just received a call at 5:45pm from the oncologist office saying they were going to get her checked into the hospital on Saturday with the port to be put in on Wednesday and chemo on Thursday. I am supposed to get a call tomorrow to confirm everything.

With all these new dates I am going to have to get mom into have her blood checked for clotting time and get her into her gp for a follow-up on her meds and blood pressure, bummer!!!

Sunday, May 23, 2010

Day 31 Sunday

After church today I had a call from my aunt that my mom was VERY upset as the home health care nurse was coming over. I wanted to be there when they arrived so I left right away for moms apt. When I arrived I asked mom if she truly believed that God has control of every second of our lives. Do we really believe that what we believe is really real?

The nurse could not find the place as neither my mom nor aunt could give him directions so he didn't get there until after 1. He was there for over an hour filling out paperwork so at least that is done now.

I received a call from my aunt around 4pm saying my mom had so much back pain and gas pain that she couldn't sit up straight. I told her there were two options either call the home health care nurse or take her to the emergency room. She opted for calling the nurse. They told her to get some gas x and colace. My cousin was there so said she would go get it.

We will see what tonight or tomorrow will go.

Saturday, May 22, 2010

Saturday Home at Last

Goodness I sure got a work out today. I arrived at rehab around 8:30. I began to load the car while they served breakfast. Mom then decided to get dressed. She got a work out getting dressed all by herself. The nurse then came in and had me sign a few papers and went over her med list from there.

I took her home got her all unpacked and then went shopping at Walmart and Publix. I suggest NO ONE grocery shop on a Saturday. That took me forever.

After I put away all the groceries mom, aunt and myself went to lunch at Cracker Barrel. What a chore with two older women, one with a walker and one that needed one. I told them I was not going out with them again, lol.

When we got home I began getting her meds ready for the next couple of days. I REALLY suggest that if anyone is taking several meds and has been at the hospital or rehab that you bring the list of meds and talk it over with the dr. The nurse really knew nothing about the meds and changes. It took me almost 20 minutes and a trip to the pharmacy with meds in hand to figure out what changes were made. Some of the meds mom had were generic and they had been giving her name brands and vice a verca. One med she had at home was a generic for another med and now they had her taking both the generic AND the brand name. As far as I can tell they now have her one 3 blood pressure meds. She had 1 new med, a replacement for another, and a change in mgs on 2 others. I just know that after she gets out of the hospital she will have changes again. I had to write it all down so I can bring a copy to hospital when she goes in.

I got home after 1pm today. Someone is bringing mom a meal and then on Tuesday. A friend helped me to find a WONDERFUL website that you can use to schedule meals. It will be a GREAT help to know who is bringing a meal and what they are bringing. Mom said she would have loved a baked potato today and guess what they are bringing? God is SOOO full of grace.

Friday, May 21, 2010

Friday last day in Rehab

Today is the last day for rehab. Can you believe it is 5:31pm and so far uneventful. Too funny last day there and the activities director came to do a interview??? Found out whenever I go in she can leave. Will get all her prescriptions and will have to figure out what scripts are no longer being given and which ones have changed and then redo meds.

She walked all the way down to the ice cream parlor, went to the dining room to listen to some music and then all the way back in the afternoon.

Thursday, May 20, 2010

May 20pm Up and down day, Mom and Dad

Today was just one of those days. I had so many plans but had to do some work for my actual job. I planned on baking cinnamon rolls and taking them up. I remembered them as I was driving to rehab at 10am.

When I got there mom was in OT. I talked with one of the ladies who has been VERY nice and she gave me several print outs and a website for some things when mom goes home. After we talked the speech lady talked with me. She said she has noticed that my moms memory and understanding has gone down hill a little and she was concerned that my mom not go home and be by herself and perhaps consider long term care. I had just talked with my friend last night about what will happen if she can't be by herself. I told them I would come get her when the pastor came to give her the Lord's Supper. As I was walking back to her room I just broke down. I am glad her roommate was not there. While I was having my breakdown 2 pastors came in. We talked a little and then I went to get my mom. There is woman who is at rehab that is the mom of our church administrator so we got her also.

We had a WONDERFUL fellowship in the library just the 5 of us and took the Lord's Supper and they anointed both ladies will oil and prayer. What a SWEET time.

I got my mom back to her room and as lunch arrived another lady from church came to visit. After her visit my mom began to cry and I asked why. She said "there are so many people praying for me". I left around 2pm as my husband was flying in today from Denver. We went out to dinner around 4pm which was nice.

Just as I laid down on the couch this evening my dad called. He will be going to Seattle soon as his aneurysm has gotten big enough for them to do surgery. He is not sure if they will do the major surgery or the stint. He is supposed to call when he finds out.

I called mom around 6pm and asked how she was doing. She had just gotten ready for bed. I said "one more day" and she replied "kind of scary".

I did get a hold of the oncologist office again today and they said I will find out Monday what the schedule will be for next week. They will probably admit her on Wednesday. Sunday home health care will come and asses her.

So much still yet to come!!

Thursday May 20 am

As I was reading my bible this morning it came to me that anyone can pray for a miracle and when God answers, praise Him. But how do we act and how do we praise Him when He does not do a miracle? What is our motivation for a miracle? I have had a couple of people pray "powerful" prayers of healing, praying for the cancer to wither, flee and go. But not one has ever checked back to see how my mom is doing. Compassion, God wants compassion.

Yesterday my mom was I believe a little depressed. I don't know if its because she HATES change and will be going home on Saturday or because of the appt with the oncologist. She really will not talk about it. I went up thinking yeah she gets to get a real shower and get up and get going. She was not as optimistic as me. She laid in bed until almost 10am.

On the rehab side her roommate told me that the night CNA/orderly kept coming in every hour and standing at the end of her bed until she woke up and then went to my moms bed. He would leave the door open so she would have to go close it as no one would come back to shut it. She said boy was that creepy. I promptly went to the head nurse and told her "NO MALES are allowed in that room".

I stayed until around lunch and then phoned to ask her what she wanted for dinner. She said Chick Fil A. I said you just had that yesterday and she said yeah but I could'nt eat it all. One thing I do need to watch is that she has not been drinking enough again.

Well getting a LATE start to the day it is almost 9am. Off to rehab.

Tuesday, May 18, 2010

Day 27 Visit with Oncologist

First, good news my mother did get her air mattress.

I went up to rehab before lunch and my mom said "can we stop somewhere to eat, the food here is horrible". So we left around 1:30 and stopped at Chick Fil A. We then drove to the drs, around 25 minutes north. I prayed that we would not have to wait forever in the office. Everything I read on the Internet said he was always running about 50 minutes late. God was good!!! We got there early and actually got in before the appt. time. One lady was very angry as she said she her appt was at 2:20 and it was 3:30.

We didn't wait long in the room and we actually got to see the Dr not the nurse practitioner. He was wonderful!! He did say that he felt everything that has been happening is from the cancer and didn't want to wait too much longer to start chemo if that is what my mom wanted. She said yes she would try it. He was very honest in saying that some people tolerate chemo and some don't.

Because of her age and health he wants to do the first chemo in the hospital. She has to be released from rehab first so the plan is to be released on Saturday. Then hopefully she will be home for 4 days and then check into the hospital. She will have to come off her blood thinner so they can put in the port. He would like her to go in on a Thursday, get the port on Monday and then chemo on Wednesday. Chemo will take 6 hours. He said they would do a combination of two different chemos and give her stuff for nausea and vomiting. If she tolerates the chemo well in the hospital then it would be every 3 weeks and be in his office.

That means hopefully chemo will start in about 2 weeks.

Monday, May 17, 2010

Day 26 new problem

Each day sure brings something new. Glad I had asked the nurse about her test and that they told me nothing to drink or eat after midnight. Of course they brought my moms breakfast in this morning!?!?! We both told them she wasn't supposed to have anything. I started reading Hinds Feet on High Places to her today. I love that book.

I got there around 8:30am and they did the ultra sound around 9. While he was doing the ultra sound I kept looking for a nurse to ask about my moms back. I finally got the head nurse and she came down to look. They had just finished the ultra sound so she looked. She kept pressing and said "it doesn't look bad yet". Then she told me she didn't meet the criteria to have an air mattress. I gently placed my hand on her shoulder and said "I understand that you are the nurse but I am her daughter. I am not going to let it get worse before something is done, if I have to go out and buy an air mattress myself." She said if she could lay on her side it would help. I told her she can't as it hurts. The nurse then said "there is criteria we can't reposition her". We will see if it happens today. If not I will be buying something.

I had to pick up my aunt today as my cousin said her back hurt bad and she wouldn't be up today. When I picked up my aunt she told me my cousin phoned her and asked if she wanted to go shopping with them at Target, hummmm. I will let you all draw your own conclusions about that. I wondered how long that would last.

When I got back with my aunt the drs nurse was there and I asked my mom what she said. She said she told her to eat more. I knew there was more than that so I asked the nurse if she could talk. She said her pancreaces is inflamed so she was going to have some blood work done. She doesn't have gallstones so that is good but not sure why the other problem. Guess I will do some internet research on that. Of course it could be the cancer.

Tomorrow we are going to see the gyn oncologist. I was going to reschedule but after talking with several nurses they suggested I NOT reschedule. I guess I didn't want to go either and face what is to come. Appt is at 3:30pm and heard that you wait for almost an hour in the office. Would LOVE prayers that we wouldn't have to wait that long. She will also get her staples out. The office could not tell me if we would see the dr or the nurse practitioner? That is weird.

Sunday, May 16, 2010

Quiet Sunday

Wow a great respite, and greatly needed. Wonderful with sisters in prayer this morning and wonderful worship at church and sermon.

Had to pick up some things for mom on the way today and got there around 1:30. My aunt and cousin left when I arrived. They had been there for an hour and my cousins back was bad so they won't be coming tomorrow.

I helped mom get up, washed and dressed. I even washed her hair in the sink.I did notice a spot on her tail bone so told the nurses. They were in the middle of shift change so don't know if anything will get done today but will make sure she gets an air mattress tomorrow. No bed sores needed!!

At 2 I took her to the ice cream parlor and she got a small cone and ate all of it. My aunt said she ate a good lunch so happy about that.

I asked at the nurses station when she was having her ultra sound and they said it is scheduled for tomorrow so she can't have anything to eat or drink after midnight. Wonder when or if they would ever have told her???? Prayers will be nothing wrong with her gallbladder.

I have done some research on the types of chemo they use for this type of cancer. Only one is pill or IV. All the rest are IV. One you stay in the hospital for 3 days and get IV fluids.
Most of them have a low blood count side effect, nausea, vomiting, hair loss.

I was so grateful for a friend at church, who has been a nurse for many years, who called and suggested that I get into the surgeons office asap so that he can take over her medical problems and will look at her from an overall perspective. Please pray that I can get in by the end of the week and no further added medical problems. Oh yes and that she can get her staples out.

I just received a call from friends at church that are on their way to visit with her. I know she will appreciate that.

Praise God from whom all blessing flow!!

Saturday, May 15, 2010

Day 24 Tired

I am still sick but getting a little better each day. Mom didn't sleep last night so was tired today. They took her to PT, OT and speech. Its funny because speech therapy is really working with the memory. She plays card games and I think is beginning to enjoy it. The woman in OT said she really wanted to work on her balance which I think is a MUST.

I told mom today that I would call the oncologist office and ask them to send orders for the Rehab place to take out her staples but that we MUST see the dr soon. I will try and make an appt for Friday or the following Tuesday. The dr does surgery on Monday and Wednesday. We have to find out when and how chemo will be done.

The Rehab has not had anyone come in and do an ultra sound yet. Guess it won't happen until Monday now. She did put her on a low fat diet. My aunt said she ate a good lunch. I left at around 11:30 to go eat lunch with Mike. BIG mistake, Palm Bay High had their graduation and lots of people there after graduation.

Mom gets a break on Sunday from therapy so she will be glad!! It just amazes me that she has been back at rehab for 4 days and they have not given her a bath yet. They keep coming in and asking her if she wants a shower and she tells them she can't as she still has a dressing on her staples and I was told she couldn't have one by the dr until the staples are out. Crazy!!

Friday, May 14, 2010

Day 23 Mom's sick

Last night around 5:30pm I called mom and she said she threw-up twice. They gave her a shot for nausea and I think it made her sleepy.

I was well enough today to go up and she was eating when I got there. Of course she didn't eat much. The aide came in and gave her a bath and got her dressed. Then the lady came in to take her to PT. She did PT and they came in and took an x-ray of her stomach. Then they took her to OT. They said they would break up her ot so she wouldn't be too tired and of course they did not. I finally went and got her after she had been there for almost and hour.

When she got to her room she said she didn't want to eat, could she have an Ensure. I went to talk with the nurse and he brought her in a little cup of energy drink to see how she would do.

The dr came in and said her pancreas level was a little high and that could mean gallstones so she was ordering an ultra sound and maybe a CT. They can do the ultra sound at rehab but not sure what they will do to get her a CT. I asked if the cancer could be causing these problems and the dr said yes.

I came home to wash her clothes and nightgowns and will go back up around 5pm. My aunt is sitting up with her now so at least someone is there with her. I am sure she will sleep most of the afternoon if they let her.

Thursday, May 13, 2010

Day 22 I am sick

Last night I felt like I was getting a sinus infection. Today I woke up feeling really bad so didn't go to the rehab center but to the drs at 10:15am. This is the first day that I haven't been with my mom :(. I was not looking forward to this visit as I had not been back for my follow up blood test back in January. My cholesterol was over 300. The good news is the nurse practitioner did think I had an infection but said with all my stress I probably won't be able to fight this off so she gave me a zpac. The bad news is the nurse pointed her finger at me and said "you will be back in one month for your blood work".

I phoned my mom at around 8:30am and she had a bad night. She had a lot of gas and didn't sleep. They gave her a pain pill but didn't help. She went to lunch in the dining room with my cousin and aunt but had to wait forever to be served and that didn't help the way her day went. They were supposed to come in a asses her today so she didn't have to do pt. Praying that she will sleep tonight.

Wednesday, May 12, 2010

Day 21

I find it hard to believe it has been 3 weeks since this all began. Right now it seems all consuming and feels like there is nothing else going on in life. I did sit outside and read my bible yesterday evening for a little while and did the same this morning. Connecting with my Lord is my life line. Why do we so often go outside of our relationship with Him.

I spoke with the dr at rehab this morning and she was surprised nothing was done at the hospital and she was there for 4 days. The hospital did not really have anything in her records either about what they did so we had to tell her all that happened. She kept apologizing for what happened and I told her it was not her fault and that I will be contacting the hospital about the admitting dr.

I got mom dressed and it was a beautiful morning so I put her in her wheel chair and took her outside for a while. I read the first 3 chapters of 1 Samuel. It was a nice time. The greatest part of this whole thing is spending time with my mom in the scriptures.

I told my mom today I would let her sit in her room to eat for a couple of days and then she needed to start going to the dining room. After I left she told my cousin and aunt that she was going to the dining room but she did not tell them in time. Tomorrow she is going to the dining room for lunch and my cousin and aunt will eat with her.

They did not start pt with her today but I am sure tomorrow will be the beginning. She is so weak and needs to build up her arms and legs. If she went home now I would be concerned she would fall.

I called the surgeon to let them know she is back at rehab and didn't have the filter put in. They are supposed to return my phone call so I can set up a follow-up appt with them. She is supposed to have her staples taken out in 1 week.

Tuesday, May 11, 2010

Skip to day 20

I guess as I blog all this I will skip around from day to day. Today (Tuesday May 11, 2010) was day 20 since this all began. This has been a LONG 4 days, which is kind of funny as they all have been long. Friday they found a blood clot in her leg. Her feet had been swollen since the surgery and her INR (blood clotting time) had been high so the dr at the rehab ordered a doppler (ultrasound) of her legs. I had just talked with the dr for the first time that morning and did not know that the dr had ordered this test. I was sitting at home resting and preparing to go to a fundraising concert that my husband had put together for the youth group. I just felt a huge sense that I needed to call my mother. I dialed her cell phone and it rang and rang. I hung up thinking to myself should I drive to the rehab facility before going on to the concert. Within 30 seconds of that thought I received a call from my cousin saying my mom had called her by accident and wanted me to return her call. I spoke to the nurse around 5:30pm saying she thought she needed to go to the hospital and be evaluated for a DVT filter (Deep Vein Thrombosis) but my mom didn't want to go to the hospital. I asked the nurse if I should come and she said she was quite upset. So I drove to the rehab and spoke with the nurse she explained everything to me and then I went to talk with my mother. She decided to go to the hospital so around 7pm we were headed next door to the hospital, via an ambulance. We had to go through E.R. again since it was after hours. We had the same dr as the first night. He was sure that she did not have a clot with her IRN level high and insisted that they would do another doppler as he stated the test was VERY dependent on the person doing it. The test came back that she did indeed have a clot and that they would be admitting her. She got to her room at 1am probably the exact same time as the first time we had been there. Then the wait began. The admitting dr did not come until around 6pm on Saturday. He said he would be calling in a vascular surgeon but nothing would probably happen until Monday.
Well Monday came and went and no surgeon. Today I decided if we did not see this dr we would try and get her transferred back to the other hospital that had 5 vascular surgeons. At 11am the surgeon appeared. I said "wow I was beginning to think you were a figment of our imaginations". Hi said "she was just admitted last night right". I said "no Friday night". He informed us he had just been contacted last night.
He began by talking about what might have caused the clot, but of course I know they will never know for sure. He was pretty convinced it was the surgery. He said that he would do the filter but that she was on the fringe of criteria to have it done and didn't suggest it. I told him I had done some research on filter and asked if it stopped smaller clots and he said no. I asked my mom what she wanted to do and she in turn asked the dr what he suggested. He said "if I step back and look at everything I would say no". So my mom decided not to have the procedure done. So we were back to square one. I went home at 2pm and left my aunt and cousin to visit for a while as told her to call when her admitting dr got in. She called around 3:30 to have me talk with the dr. He was totally rude and told me I did not need to be involved with her move back to rehab. My personal opinion is that the surgeon was upset when he found out she had been there for almost 4 days and let the admitting dr know what for. I will be writing a letter to the hospital about him. He is the second admitting dr that we have had problems with, more on that later.
I received a call around 4pm from my friend Charlene (my angel) saying she would be moved at 4:30pm. Another friend went up at 4pm to set with her for a while. I phoned at 5:30pm to find out she was finishing her meal and then would be headed to rehab. I phoned the rehab to see what would happen since she did not get the filter. They were all surprised and was not sure what will happen. Maybe I am "old fashioned" but do you do rehab with a clot in your leg??? They assured me this was a good question and that the dr there would make that decision in the morning when she got there. IF she is not doing rehab her insurance will not pay so tomorrow we will see what happens.

Monday, May 10, 2010

More on my journey

I thought I would take a little break on writing all the history and just blog. Today is day 19. Hard to believe day 19 with my mom since all this started. She is back in the hospital where she started all this with a blood clot in her leg. I will say more about this later. I know this is hard on her and it is also very hard on me. I think the hardest part has been dealing with the drs and nurses and trying to understand what they are trying to tell you or not tell you. Some other issues have been drs trying to get the patient out of the hospital as quick as possible, some drs with attitudes, some nurses with attitudes and not knowing what questions to ask to get the right answers and one dr saying one thing while another says something different.

I have always known that you have to be your advocate with medical issues but have learned through this that you have to learn to do research, research, research. I have also learned that I really do need to keep a record of what has happened each day. More later.

Sunday, May 9, 2010

In the beginning, Day 1 and 2

Wow, I have never blogged before but a friend said maybe I should to share what I have learned while I have been dealing with my mothers cancer, round 2. 3 years ago my mother was diagnosed with colon cancer. After the shock and awe, she had surgery and that was that. It was stage 1 and encapsulated. No chemo, no radiation. My mother was 77 then.

This past year she has been sick off and on, has had spotting and bad bowels. As drs go they of course treated her for 2 different problems. This is the major problem with specialists. A year ago she went to her gyn and he did a biopsy and ultra sound but found nothing. He told her to come back in 6 months if she still had the problem. As parents go of course she said nothing to me.

When we did go back to the gyn a year later they scheduled a D&C. In the mean time she began to have horrible pains in her stomach so we went to her GP. He ordered a blood test for cancer, did a stool sample and told her to take some fiber. The following Friday she had her D&C. On the following Monday we went back to her GP. He scheduled her for an appt with a gastro. dr as all her tests came back fine. Two days later her pain had gotten to the point that she could not stand it anymore so I drove her to the E.R.

Nine hours after we arrived at the emergency room she was admitted to the hospital. They did a C.T. scan and found a mass in her abdomen. I arrived home at 1:30am exhausted and was back at the hospital at 8am.

After talking with the admitting dr he informed me that he was sure she had cancer and it was bad. The dr was VERY unoptimistic(if thats a word) and the nurse was suggesting hospic. The dr then suggested we have her moved to another hospital where she could be seen by a gyn oncologist. That move happened at 10pm at night.

They moved her to the cancer floor at the hosptial but when I arrived they informed me they would be moving her to the women's floor as that was where the gyn preferred his patients. I spoke with the dr and he seemed somewhat optimistic about doing surgery but would do a full hystermecty, remove another mass, and a possible bowel resection. She had to come off her coumidin for 7 days before the surgery could happen. She was moved to the women's floor at 10pm at night. Then the wait began.