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.