Another Update

Just to keep up with what has been going on lately I'll try to post a few things. I feel stronger from even my last post, but I still get tired so easily. Still going in for bloodwork, last week I cut back to once a week instead of two. Little Rock had told me that as my platelet count came up once a week would be fine, it has been continually climbing until yesterday, then it dropped some. So I don't know if I will have to start back twice a week or just wait till next week and see if they will jump back up. I also have other issues as well, my kidneys aren't filtering they way they should, this has just happened in the last month. My filtration rate has dropped 50% from April to May. They want me to go back to my nephrologist, Dr. Hey to see what he thinks. LR seems to think this has nothing to do with M.M. but with everything you read either chemo or some of the meds I have taken cause something like this. But it may just be kidney issues and it will have to be dealt with, my dr's office is trying to get an appointment for me.

The weather ha been great the last few days, the pool water is warming up, I can't wait for Jonah to be able to get in the pool. I think he is going to enjoy the water this year, he sure loves his bath time. Kara came over yesterday morning to watch Jonah at our house while Adrienne worked a few hours and I would get to see him as well. He played inside and out, Kara pulled him in the wagon and then he helped push the wagon, I tried to get them to push me (Mimi). He had such a good time, but you have to watch him every minute, no getting in the pool before its time and for sure no falling in.

I will go back to Little Rock the second week of June for a day of testing, then we will see Dr. Barlogie the next week to make sure all is well and get my orders to start treatment at Highland Oncology (the last phase) of treatment. Of course this phase will last 3 years and then I will be done besides an occasional visit to Little Rock.

Nothing Much

Not much going on, I feel like I am gaining strength everyday even though I have a long way to go. I have alot of issues with my shoulders and back hurting when I do alot of walking, I just really get tired. We blame that on not having any muscle in my back, that was probably one of the first thing to go when I started loosing weight. I am trying to rebuild but it will just take time, I just want to rush things, I just want to be able to do anything I want but that is not possible yet. I want to be able to hold or carry Jonah but that isn't happening for a while yet. He is growing so fast, he loves to be outside more than anything, the last couple of times he has been over it has been too cold to go outside and that makes him mad. Yes, too cold, this crazy weather. I am so ready for it to warm back up, I stay cold most of the time anyway, most everyone else is fine but I am always cold, hopefully when it warms up I will get warmer too.

Settling In

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.

No Place Like Home

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.

Coming Home

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.

Rewind a couple of days

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.

Rough Day

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.