Saturday, February 12, 2011


It seems now every treatment experience is a little different. 

Thursday, we arrived a little early hoping to get started early.  I had an appointment with my geneticist at 4pm and I wanted to be sure to make it.  I made the decision to have the gene testing done to determine if I'm carrying it or not for 2 reasons - for me and Sarah (and Alex too).  If I am carrying it, I'll have a double mastectomy immediately and get it over with.  For Sarah, she now has the knowledge that she is likely to be carrying it too and it will help her to make her own decisions in the future.

But that didn't happen.  I had my blood work done on Tuesday in anticipation of this day so we could start immediately, but the results were not at Dyson, so Kathy, my nurse, had to hunt them down.  This delayed us almost an hour.  When I saw Dr. Rubin during the off week, I complained that I had too much saline (2 bags instead of 1) and it made me very uncomfortable for several days afterward.  He said many of the drugs do not need to be administered with the saline.  I made sure I discussed this with Kathy ahead of time.  She has a different methodology than the other nurses.  She adminsitered 3/4 of saline bag first then followed it with the pre-meds, etc.  This in itself slowed us down more. When 3:45pm hit, I had Bob go up to Kelli the Geneticist and reschedule.  It wasn't until 5:30 that we left.

Sure some parts of my day were the same.  Needles and drugs, Barbara and Bob.  Shelly couldn't make it in this time - she had enough going on in her own life, that's for sure!  But she was definitely there in spirit as she texted and im'd me throughout the day.  What was different for me was the lack of sleep.  Usually I go to sleep when I'm hit with the benedryl but not this time.  I felt what would be described as restless leg syndrom, but I felt it all over my body.  Although I was tired, I couldn't settle down to sleep and relax.  I would be jolted up feeling jittery and uncomfortable.  I had sent Bob out for a bit after Barbara had left.  He was feeling anxious about the slowdown and it wasn't helping me.  It was very crowded in the infusion room too.  When we got there, there were no 'corner' chairs available, so there was a shortage of power for all our electronics.  I had wanted to try to use Alex's Brain Scan pieces to try to help me sleep and did... but even that didn't help.  I did manage a short nap when Bob came back, but not enough.  I went home and settled in to rest and read for the night. 

Friday wasn't much better.  I managed a little work but then I had to lay down for a while.  Shelly stopped by with fries with lots of salt - she knows that I can't taste anything for the next few days and the salt helps!  After she left, I had to drive myself back to Dyson to get my neulasta shot.  Barbara had called me to see if I could go out last night and at the moment I thought I could make it.  I made what I thought was a 'quick' stop at the Walgreens but that was enough to wipe me out.  Alex came home for the weekend but I wasn't much good with dinner for the night, so he and Bob finished off some leftovers and I layed down once again.  I had a strange night sleep of feeling hot and cold all night.

So it's Saturday.... slow slow Saturday.  Not alot gonna happen for me again today.  I made some eggs for breakfast for all of us and had to rest.  It's just the way it's gonna have to be... again looking forward to the upswing. 

That's my update for now.

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