IV fluid update

Hi Everyone:

Just wanted to drop a quick update on how my IV hydration is going. I'm hanging a 500cc IV bag of fluid every 8 hours here at home. I have an IV pole and a pump to run the fluids in. I flush my line and put heparin when I disconnect it. I'm feeling a bit better staying hydrated now. I'm eating a bit more food too, I also believe my bowel infection is finally going away.

I'm very very tired though, and have been sleeping a lot. I mean a huge amount of time, I'm thinking my anemia must be really bad again. I may need another blood transfusion, I see my internist on the 30th of the month so I'll see what my labs look like then. I was able to speak with a gentlemen, who has MDS and he went over with whats has happened with him. It was kinda nice to talk to someone who has this, who knows what's happening, and how scared I am about my bone marrow totally failing. He was able to provide some good advice to me.

As some of you are aware, my daughter Nikita has been home all week from school. I took her back to the doctor yesterday. Her doctor ordered an emergency CT scan, the radiologist came out and told me there wasn't a bleed or a tumor that he could see. He didn't feel that he was the expert to compare her previous CT's from when she had the lesion and required surgery. He would send them to Walter Reed and let the "experts" his words look at them. So, Monday I'll call to make an appt to see the neurosurgeon. Nikita said that the pain was down to a 3 out of 10 instead of the 8 out of 10. I feel a bit better today about her, she seemed a bit perkier today and there was a smile on her face. Just wanted to let you know, we're hanging in there.

Love you all,
Barb

Hi Barb--
Good to hear you are doing better and sounds good meeting someone who understands what you are going through Great news about your daughter feeling better. It's good you've got such good medical care near you. Bowel infections can really wear you out, hopefully that is the cause of your tiredness, and not the anemia. My best wishes and prayers are with you, Barb.

Barb, thanks so much for the update. I'm so glad you are getting IV fluids and I hope it continues to help some. It's also good that you are able to eat a little more. With everything your body has been going through it makes sense that you would be exhuasted, especially if you are really anemic. I'm glad you found someone to talk to who has MDS - there's nothing like talking to someone who's been there and is going through it. I think sometimes that helps more than anything. I'll be praying that when the people at Walter Reed look at Nikita's CT, that they will say it looks fine. It's good that you are seeing the neurosurgeon, especially with her history. I'm glad she's perking up and starting to feel better though. You and your family continue to be in my prayers. Love and hugs

Hi City Girl, Marji, Babs, Hippi, and Omega:

Thanks all for your posts. It's always nice to hear from you all. You brighten my day and make me feel most loved.

Today has been a rough day for me. I've had a lot of pain, and lots of vomiting today. I'm not sure why, but it's just one of them days. Then this eveing I had some sad news. My dear friend Vicki, who helps me out so much, has found out that she has cervical cancer. So that's now Vicki, her daughter Jesse, and Vicki's Dad, who all have cancer. Please say a prayer for this family, I don't know why bad things happen in life but it does. It certainly puts life into perspective doesn't it.

Anyway, I hope you all are doing well tonight and that you can sleep well and rest well.

Love you all,

Barb

Barb, you are such a brave person, and even when you feel so terribly bad, always have something positive and hopeful to say. You have such a burden with your sick Nikita and your friends with cancer, not to mention your own serious health problems. I worry so much about you and want you to know that you are in my prayers. Keep us informed.

Love, Pat

Hi Omega:

I'm sorry to hear about your friends Mom and her Stepmom. Your right cancer does seem very common among people. I don't understand why in life this happen, I'll certainly be asking God when I meet up with him why. I truly am struggling with my cancer, then to know so many now who have it in addition to me. It just doesn't make sense.

I just want to know "why" me, as if having lupus and fibro wasn't enough, I needed an additional problem. I'm so very close to giving up, I can't even begin to explain it. My daughter asked me tonight, "Mom, how old were you when you had me", I said 28 and she said "do you think you'll still be alive when you're 63". It hurt to hear her say that to me, I know she didn't know it. It's a shame I've got to try to reassuare my 14 yr that Mom will still be alive tomorrow. I mean I know each day we all are a day closer to death, but when you've got something that will become terminal, it becomes so much more real. I'm a person who likes to have a plan, and know when things are gonna happen. This "unknown" but I know it's coming is driving me nuts.

Okay, enough of this, I'm sorry I'm venting again. I meant to just say thank you and that I was sorry about your friend. Thanks for being there.

Love,
Barb

Barb
I think one day when we all see God, we would ask the question too.
Sometimes things just can't be explained, and there is no "model" answer for it. Yes. The "unknown" is a very frustrating state. Admittedly, I learned a lot from you. I can't imagine how much you've been through, one after another, but you still have courage to care for other people.