Finally! an update.

Hello everyone,
Sorry I have taken so long to post an update. My treatment has been an ever changing target and still is. I got some bee in my bonnet in the hospital last week about being on the computer and I just did not even boot up until late yesterday. A week with no computer--only the Blackberry. Perhaps it has to do with summer camp season: I always looked forward to a week with no computer while I was at camp.

I came home from the hospital Friday evening with no PICC line and no IV line. So Saturday and Sunday at the clinic I got stuck. Four times on Saturday. Mercifully only once on Sunday. New PICC line went in Monday....a more painful process than in the past. It's still pretty sore but feeling better.

Thursday evening in the hospital while I was eating supper, I took a deep breath and felt a wheeze in my left lung. I immediately became short of breath and punched the call light. I informed the aide that I had a wheeze and was short of breath and the entire nurse's station showed up at my door. We were all in a panic. My nurse for the day was the only one on the floor that I didn't know and she checked everything and said I sounded good, the stats were good, that I really was breathing normally. She called respiratory for a breathing treatment and she called the doctor. Respiratory showed up and pronounced me breathing normally with good blood oxygen level. The nurse came back in and when I asked her what the doctor said she confessed she hadn't called him. I insisted she call him and he ordered a chest x-ray which looked good. So this new wheeze is scar tissue rubbing and breaking up in my lung. SIGH OF RELIEF. DEEEEEEEP SIGH OF RELIEF. (I really should have just taken an Ativan and got over myself!)

I am sure that I can overcome pneumonia again. But if I have to, I would like it to be in connection with a transplant and not some annoying infection.

Meanwhile I developed an inflamation in my right eye called Iritis or Uveitis, painful but not really significant in the scheme of things. Because my white cell count is so low the BMT docs insisted I see my eye doc who graciously admitted me through the back door at the end of his day, confirmed Iritis and dosed me up with Prednizone drops. So the eye is improving. Not as fast as when I am totally healthy, but fast enough.

Really, if my body was as good as I look and feel, life would be just about perfect. I don't have a transplant schedule yet because there are still balls in the air. The bone marrow biopsy from 2 weeks ago was good so I think that buys us a little time to decide all this. Right now we are waiting on a ruling from the infectious disease doctor on whether to take the antibiotic for 10 days or 30 days. The strep infection in my PICC line last week was the exact same infection I had in February so there is a possibility I am carrying it around somewhere in my body.

Next concern is my liver. Liver counts are way way high after last week. They have changed the anti-fungal 3x in 10 days to try to find something less aggravating. I am to start an oral chelator drug (which leeches the iron out of my liver) but so far have not been able to get the scrip filled. It's been a back and forth between the pharmacies, the social workers and the clinic pharmacist. I'm hoping for some good news on that today.

So I am back to daily clinic visits. They should be shorter but sometimes they aren't. Depends on the nurse and what is going on. I'm getting an IV antibiotic for the infection and a different IV anti-fungal which doesn't take as long to deliver. This is okay. I think I might feel good enough today to drive myself again, and my appointment is not til noon.

On other fronts, I enjoyed a cup of joe today for the first time in months. Coffee has not tasted good at all since about the first of the year. I reckon this means I have no chemo in my system right now, though my pill pile looks like a food group twice a day. Dr. Ganguly ordered me to stop taking anything unnecessary (e.g. vitamins) which left only the really large pills and one small one.

So raise a Starbucks for survivors and I'll keep you posted.
Cathi