17 SHOTS TO GO



Denise I was reading your blog and I just wanted to say that I am right there with you if this does not work I WILL NOT BE DOING THIS AGAIN. I feel like if I fight this once and it comes back then maybe it is just Gods Will and there is nothing that I can do about it. Some days I don't feel like there could possibly be enough prayers in the world for me.



My Neutrophils bottomed out I had my blood work done on Thursday and they called me on Friday to come and get a shot. I didn't get Procrit I got something else. I think it is call Neupogen or something like that. After having that shot on Friday it made Saturday and Sunday not quite as bad after Peg dose on Friday.



Forgot to post on last page that my sister had her baby on December 20th my son's birthday. He is just perfect. The only thing he is having a problem with is that one tear duct did not open or is clogged and they are watching that. He weighed 5 lbs 15 ounces and was 18.5 inches long. He was born at 8:11 a.m. I got to be in the room and be right there as she had him. He is just a wonderful little blessing from above. He has a brother that is 4 and a sister that is 2. He will have to learn to hold his own. His name is Kadyn. It was instant love in my heart for this little guy. I am very close to both of my sisters. My other sister only has one child but he and I are also very close. Being on this treatment has been hard because I don't feel well enough to keep the kids when I really want to. (THIS BRINGS OUR KID COUNT TO 5 (My son, my older sisters son and my little sisters 2 son's and 1 daughter)

*********MY REASONS FOR STAYING STRONG THROUGH THIS**********

Matthew - My son 9 yrs old
Levi - My older sisters son 7 yrs old
Kaleb - Little sis son 4 year old
Kennedy - Little sis daughter 2 year old
Kadyn - Little sis baby boy
There most likely won't be anymore babies for this family as I don't want anymore and neither does my oldest sister and my little sister had her tubes tied.

Well as it is 2:30 in the morning and I have not been able to sleep even with Ambien I guess I should go and try to get some sleep have to be at work at 8:00 a.m.


MAY GOD BLESS ANYONE THAT HAS TO ENDURE THIS KIND OF TREATMENT

Week 30 and Counting

Well Friday will be shot # 30 of 48. It has been a long time since I have posted anything. Here is what is up for me. I went through having severe infections about two weeks ago. (Strep, Sinus, Pharyngitis, Laryngitis, Bronchitis, and DOUBLE Ear infection, and the stomach flu all at once) IT HAS BEEN HELL. (Excuse my language) They ended up giving me a shot of Rocephin and 10 days of Amoxil a shot of Phenagrin and pills of that as well then some Diflucan to keep from getting thrush.

It took me some time to get over this and I felt better for about a week and I am now starting to get sick again.

I had chunks of hair falling out and had my head shaved and got a wig. I haven't been able to wear my wig like I would like because my head itches so bad.

I was wondering if anyone else is having or has had problems with sores in their mouth and in the corner of their mouths? If so do you have any suggestions on how to help this? I have these so bad that I can't eat. Even just drinking water burns my mouth.

My numbers have dropped low enough that they thought they would need to start some other meds to boost my immune system but then they seemed to jump back up a little just before they were ready to give me some extra help.

I can't wait for this to be over.

Enough for now.

TRYING TO STAY POSITIVE

Well I am trying really hard to stay positive about all of these sides. I keep telling myself that the sides are temporary and hopefully the results will last a lifetime. I am on my fourth throat infection with thrush. My neutrophils keep dropping then going back up then dropping again. I have had to go in more often for blood work than usual because of this. Some weeks I have a couple of days that I feel really good and other weeks I don't have any good days. I am always thankful for the days that I do feel good. I was hoping to keep up with posts but it is most of the time the furthest thing from my mind. I am also pretty anemic if my numbers drop anymore than I will be reducing medication and starting procrit.

Well enough for now hope all is well for everyone else.

ITS BEEN SO LONG

Just want to start by saying that it has been so long sorry for no updates. I have had some rough days. I have been having some pretty bad sides.

I was unfortunate enough to get strep throat last week. My family doctor gave me a Z-PAK five day dose. This was on Thursday. On Friday I felt worse and a doctor from my work was kind enough to give me some Mary's Magic Mouth Wash. This however didn't really help. By Sunday I was so sick that I could not even stand to open my mouth let alone swallow. I decided I better go see the doctor at my work. Went in and it was a doctor that was not happy with the looks of things. He sent me to the ER because he was worried that with the way things looked there was a chance that my WBC had dropped way to low and that there may be infection in my bloodstream. I went to the ER and they did a CBC they said that the count was low but not low enough to be what he was worried about. I ended up with a diagnosis of Thrush lucky me so with some more wonderful medicine I am finally starting to get over this nasty stuff.

I went to my doctor today for my 12 week check-up and the doctor says that if my WBC has dropped any more he will most likely want to decrease my PEG. They also told me to be sure to tell anyone that is going to give me an antibiotic that I need something for the Thrush they said that because I am Immune Compromised I will get this every time that I take any thing like this.

Some sides are better at this point but the fatigue has really set in. I have lost about 15 pounds and that is always good.

The nurse in my office was telling me that they have had 4 people drop out of the study so far. I let her know that was not an option with me. With the wonderful clearing virus in two weeks I want to continue to do everything I can to have a better chance of this not coming back.

I never have any #'s to post to compare because I just don't ask for the actual #'s. I think I will see if I can get them.

Don't have to go back for 4 weeks.

Shot six is completed

I have completed shot six and will be going to the doctor tomorrow. I will find about about blood counts and such. I have a few sides but I am able to deal with it. I will be so happy when this is over but also nervous to know if the virus will stay gone.

Work has been manageable but also tiring.

REALLY BAD DAY

Well my day started with leaving the hospital this morning (my son had a sleep study) with no sleep and going to work. When I got to work my neighbor called me he was to feed and water our animals this morning because my son's sleep study was for last night and all day today. He called to let me know that my beloved dog Kato 13 years old had died. I feel so awful for not being here. So I ended up leaving work and going back to the hospital. I didn't want to tell my son until we got home. When we got home we told my son and he is devastated. Kato was a very special dog. Matthew has seizures and this dog knew before the seizure would start that it was coming. He also knew when my son would be asleep and get fever or sick. My family all showed up and we had a small memorial for Kato. This is how special he is.

To make the day worse when I got home I realized that the freezer has been pushed open by some food and everything had thawed and made a huge mess.

Then the day just kept getting worse my little chihuahua has apparently gotten into a fight with my cat and his eye is not looking so good. I will need to take him to the vet in the morning.

When it rains it pours and I not sure how much more can pour down on me before I break.

Shot # 4 DONE only 44 to go!

I have made it through the first month and it feels great that a month is over. I have some very big news. I went for my two week labs a couple of weeks ago. Yesterday the nurse from my doctors office called me. I started at 5.8 million VL and the two week results are
DRUM ROLL.........

CLEARED VIRUS IN JUST TWO WEEKS!!!!!
This was very unexpected when the nurses drew my blood they told me not to expect to clear virus due to the high VL before starting. I was so happy to hear this result that I didn't ask about any other results. I will go back in on Wednesday to have my 4 week blood work done. Getting this news on Friday before my shot made it a little easier to do the shot knowing that it is working.