I am about to get use to being home, I have been home 2 weeks now and have enjoyed everyday of it. It is so nice not having to go into the hospital everyday, whether it be for chemo or fluid or just blood work, it is nice not having to do it. As I had mentioned before I do have to go to Highland Oncology twice a week for blood work, they overnight the blood tubes in once a week to UAMS in Little Rock. If they feel like something is off they will call and let me know and we will go from there. As my platelet count comes up I will just have to go in once a week, probably in 2 or 3 more weeks. I feel like I am getting some strength back but it sure is slow, just moving around alot just about takes it all out of me. I try to do a few things around the house then I have to rest. When I get tired or do too much my shoulders, neck and lower back hurt alot. I am just taking it slow and praying that each day will get better and better.
Wednesday, April 21, 2010
We were scheduled to be released on Monday, April 12th, even though Dr. Barlogie had dismissed me a few days earlier, he wanted me to come back on Monday to double check my counts before I came home. Clay came back home Sunday night and Candes drove down to bring me back home on Monday. We met with the physicians assistant and a couple of different nurses to get my home medications lined out and prescription orders written. All was well except they wanted me to take a shot that would help raise my red blood count, so we headed to the infusion center for that. Of course you would know that they were so busy, I just wanted to get out of there and head back home. We waited about 2 hours before getting my shot, then we headed home. We got home about 6:30 that night. It was so exciting pulling in the driveway, there were banners in the yard saying Welcome Home Barbara and It's a Happy Day (made me cry) Thanks Sharon and Taylor. When I got in the house there were also signs throughout the house, made me feel really loved. Thank you Kara and Adrienne. The kids were here and Sharon had brought dinner over. Thank you Sharon. I was glad to see everyone but I was so excited to see my baby, Jonah my grandson.
Since I have been home I have been doing ok, some days better than others, still pretty weak and I get tired pretty easy. I go to Highland Oncology 2 times a week for blood work. I will go back to Little Rock for testing and to get my maintenance orders the 2nd week in June, so besides that I am on break and it feels good. Maintenance will probably start the 3rd week in June at Highland, I will go once a week for 3 years for chemo and I will be taking another chemo in pill form at home. So this is the update on what has been and will be going on.
Sunday, April 11, 2010
At this point it doesn't even matter what happened on Saturday or Sunday just knowing I am getting to go home. We packed up the apartment and Clay loaded the car to head back to Fayetteville. He needs to be at work in the morning so Candes is driving down tonight to take me to the doctor and drive me home tomorrow. I will see the physicians assistant for discharge and visit with a nurse to discuss meds while I am at home.
Thank you for the many prayers that have gone up on my behalf, I ask that you continue to pray for me as I do maintence at Highland for the next 3 years.
Tuesday, April 6, 2010
I just haven't felt like posting so I will try to go back and play catch up to post most of what has been going on. This may post on 4/6 when I tried to start it but it didn't happen, so I will try it again tonight. When Clay and I went in I was nervous about the access of my ports, but I was blessed to have Nurse Karen and she was wonderful. Not to say there wasn't some pain involved but she made it much easier. She did the cultures on both ports to check for infection (it came back negative) after having bloodwork done I had to have platelets and a unit of blood. It was a long day, Candes came to the hospital and Clay went back home. Monday and Tuesday were the same routine going into the hospital, I started getting really bad pains in my stomach and was so weak, it was the lowest I have felt. Of course I had bottomed out with my WBC so that didn't help matters. They put me on an 5 hour infuser antibiotic, we will do this twice a day just incase there was any infection or bacteria in my stomach. It was good to have Candes here, she had the worse shift this time though. Darcy met us at the hospital on Wednesday so Candes could go back home. On Wednesday we had bloodwork, bandage change, antibiotic hookup and we were done. I was starting to feel a little better by then, I still wasn't much company though. I am feeling better but really pretty weak, my counts are coming up so that makes you feel better. I had a doctor's appointment with Dr. Barlogie, he looked over all my counts, even though my WBC had just started to come up he felt like things were on track. He wants his physicians assistant to see me on Monday just to double check my numbers and discharge me. Darcy trained as a nurse, she got to learn the process of hooking infusers up to my port, on Wednesday night she was up and down alot hooking and unhooking something or another. I had the antibiotic and potassium/magnesium. She did a good job, she was a good nurse. Clay got here Friday morning and Darcy went back home, today was a short day at the infusion center, all was good with my counts, my WBC had jumped up to 3.3 so I was tickled to death , we didn't have to do anything. I didn't have to get a growth factor shot today since my counts were up. (I am done with those) Clay and I stopped to get a sandwich since I could actually be out in public. Clay and I took a walk around the apartment complex, I was pretty tired when we got back, I still need to gain alot of strength.
Saturday, April 3, 2010
I thought I wanted pancakes this morning so Clay ran down to the corner McDonalds to bring us breakfast, well 2 or 3 bites I knew that wasn't what I wanted. The syrup was so sweet I just couldn't handle it, so that was the end of my breakfast. Felt a little yucky this morning, we just had a relaxing morning, actually Clay did things around the apartment like laundry and things like that while I relaxed. The wait wasn't too bad in the waiting room today but by the time it was all said and done we were there again till almost 6. My B.P. stayed up again today, so bloodwork, a shot, IV antibiotic was the start, again we wait for the labs to get back, I was low on magnesium and I needed a unit of blood. This meant alot of wait time since they have to order all that and sometimes you think it is being delivered by a courier pigeon. On Thursday I had mentioned that they had accessed my other port to use for a week, I felt like when the nurse dressed it that the dressing was pulled too tight, I don't really know but last night it starting oozing some blood. They checked it today, wanted to take the old dressing off, they were a little concerned with the oozing, they ran a culture on the one port to see if there was any infection. After getting my magnesium and blood they took the needle out of my port to let it rest tonight, They will have to access both ports tomorrow because they wanted to do another culture before I had my antibiotic. The site where my port is still very sore and tender, it has just been about 9 days since I had it put in. I dread tomorrow already for when they have to poke the needle back in.
Please pray that my port will heal and there will be no infection, I am not sure what the process would be if something went wrong with it. Thank you again for your love, prayers and support.
Friday, April 2, 2010
Clay got here by 10 this morning so Jeremy was able to head back home pretty early, I enjoyed him being here to help this week. Seems like things are always so busy we don't get alot of time to visit. We enjoyed our time together. Clay and I just hung out at the apartment for awhile before time to leave for the infusion center. They were really busy, we waited in the waiting room along time before getting called back. It was pretty much the usual, bloodwork, IV antibiotic, growth factor shot. At least my blood pressure stayed up today, I didn't have to get fluids. We had to wait for the labs to come back to see if I needed anything, if you don't wait it will never fail and they will call you back in after you get home, that's no fun. My white count is coming down but has a ways to go yet before I bottom out, but I needed platelets today, they were at 15 and they need to be at least 20. So this is what took alot of time, they had to match and order my platelets, it was another tiring day, again we were there about 5 hours. When Clay and I left there we stopped to get some dinner, he hadn't really had anything to eat since about 7 this morning, he was a little on the hungry side.
Thursday, April 1, 2010
Another restless night last night, I don't know what the problem is I usually don't have any problem sleeping while I am down here. Part of it was my stomach, just the yuck feeling not knowing if I would have to get up and run to the bathroom, just a panic. The stomach stuff is the worse, I will be so glad when it leaves me, none too soon. This morning was pretty bad as well and to add to it I got so weak I could hardly walk straight, I knew something was off. It was my blood pressure, what little there was. It was a total of 51/37 so of course that means fluids, fluids, fluids. They gave me a liter of fluid and that brought it up a little but not near enough, so another liter of fluid I received. It was a little higher after two liters of fluid they let me go, my counts were ok, I am still doing IV antibiotics since I had bronchitis before I came down, got my growth factor shot and blood work. It was a very long day, Jeremy and I were there from 1-6 today, it was a very tiring day. The fluid helped my energy level, still a little weak but not like this morning.