I started the Vidaza treatment January 16 for the MDS. This is supposed to raise my blood counts, in the long run, and reduce my dependence on blood transfusions. Of course, in the short run, it reduces my blood counts even more. (?) and has a whole host of other fun side effects.
I, with the help of my doctors at UNC, arranged to get the Vidaza administered here in Leland by Dr. Arb since the treatment is supposed to be M-F one week and M-Tues the following week. I won't go into the difficulty of doing that (can you say red tape!), since I used to see Dr. Kotz at Hanover Medical in Wilmington, but anyway..... I am now a patient of Dr. Arb for local treatments like this.
The doctors kind of minimized the side effects of Vidaza. Seems like that always happens.... I started with sub-cutaneous injection of this med. I have one arm and a belly to use as a pin cushion for this fun. Two shots per day. I got the shots in my left arm (can't use the right b/c of lymph node removal in 2007) and then did 2 days in my belly, for a total of 4 shots there. My belly turned black and blue, with red circles around it; it was disgusting!!!! Anyway, after that I decided to go to the infused Vidaza that goes through my port. Of course, that causes more nausea (I already had a lot of nausea). So, I made it 5 days and then asked Dr. Foster if we could call it done. He said yes, thank God! I felt just as bad as I did after the Adriamycin that caused this blood problem in the first place. Did I mention I hate chemo?!
I am supposed to do the Vidaza 3-4 cycles to make sure it works. But life goes on, right? Geoff and I got tickets to see Elton John at the RBC center March 16 and I will NOT be doing Vidaza that week even though I am currently scheduled to do so. I'd be puking the whole ride up to Raleigh otherwise! So we may have to be a little bit flexible with the Vidaza scheduling. I have mixed feelings about bothering with this to begin with.....no treatment has worked for me yet, you know?
So, I went to get my blood checked last Friday the 27th. Geoff and the girls were in the car headed for Maryland for Hope's rhythmic gymnastics meet. Of course, I needed a blood and platelet transfusion. My platelet count was 7!!!! It's supposed to be around 140 but has lately been 25 ish. At 7, I was at risk of bleeding to death internally, around the brain, or in the gums. Thank goodness, the only SE I saw was red dots all over my legs.
Anyhoo, I drove myself to the hospital for a transfusion, thinking I'd be home that night. Instead, I got admitted overnight and they didn't finish the transfusion until after 3 am!!! I can't say it was restful, because every hour or so they had to change bags or check vitals or whatever. Anyway, I got a platelet as well as a blood transfusion. Unfortunately, the platelets only last 3-4 days, but I should be good to go despite that for a couple of weeks (fingers crossed!)
So, my life has become fairly slow. I spend a lot of time in our new (awesome) Tempur Pedic bed with the adjustable mattress!!! (I was so uncomfortable at the hospitable in the lousy bed it wasn't even funny). Now, I can raise the mattress to read or watch tv, or whatever and my back has been loving it.
I walk the dog about a mile most days. I try to do yoga or pilates for about 30 minutes a few times a week. But I am out of breath a lot. I have not gone to the pilates studio in weeks because I don't drive very much and I don't think I could make it through a 60 minute class. I am very tired and don't cook at all (hint, hint, we need meals please!!) I am glad we went to Paris when we did because the Lord blessed me with stamina for that trip and 2012 ushered in a new phase of health for me. I am ok with whatever he has in store for me though.
The girls, on the other hand, are not ok with this. They had a bit of a "breakthrough" in their grief therapy the other day with both of them crying.... I knew they were holding their emotions in. I think they've noticed how slow I've gotten and they realize that they may lose their mom. Very sad.... all I can do is talk to them about it and let them attach themselves to me. Hope in particular wants to be with me all the time when we are home. Ugghh. Prayers please for our girls to find God in all of this mess. I fear 2012 may be a tough year for the Hosfords.
So that's what is going on with us... hope you all are well!