12 November 2011

Yesterday was kind of a mixed bag.  When I got there I had to go to the main desk and register that I had arrived.  Because of my problems with the RN last time for the lab work, I told the woman at the desk that I did not want the same RN I had last infusion.  She asked me who it was and why.  I didn't remember her name but described her and she knew who it was.  I told her that the main problem arose because she would not listen to me.  I know ME better than anyone else and when I say I have to be inclined for access to the port, it just makes everything go smoothly.  Instead, she 'knew' better than I and, therefore, the procedure took 1 1/4 HOURS!!!!!  The registrar said Joanna wasn't there today (they rotate) but she would note it on my chart.  I then went out in the hall to sit and wait.  Within just a few minutes, Maureen called my name.  From the time I got up, walked into the cubicle, explained the procedure for being inclined, she said, "Yes, I have accessed you before."  She inclined me - got the access, drew the blood she needed, capped the tube for infusion.  I was back sitting in the hall no more than 5 minutes later!!!   Hurrah.  I told her she had lowered my BP by 10 points!  I also asked her how long she had been an RN (5+ years) and where she had trained.  She said CT!  I asked where and she said Fairfield.  I told her I had lived in Newtown for 20 years and that my best friend was living in Fairfield.  We had a good laugh.

Everything is good from the blood work and physical exam.  However I had some difficulties with the infusion.  I had told the Dr. that I had again had the restless leg syndrome with the previous infusion so he ordered Ativan.  It was given through the port, immediately followed by the Benedryl.  Unfortunately, I was both groggy and had RLS and just couldn't relax.  I would start to drift off but then would be restless and just couldn't relax.  I finally got another 1/2 mg of Ativan but that just didn't take care of it.  I finally asked if I could go lie down on a bed, instead of reclining in a chair.  That helped a little and I did doze but couldn't quiet the RLS.  That, unfortunately lasted about 2/3 of the infusion.  I finally was able to have the lights on and could sit up without discomfort.  Dave said I was a lot more fun!!!  I walked like a drunken sailor!

I will gladly suffer those side effects if that's the worst I have during the infusion, but I do think I need the 1 mg of Ativan before the benedryl  and time in between those two drugs.  Because they feed all the infusion chemo through saline, I spent last night peeing every 1 1/2 - 2 hours all night!  So I didn't get a particularly good night's sleep when I was really exhausted.  Tonight will be better, I am sure.

The fact that I have only ONE MORE TO GO encourages me to finish it out.  I had already decided that unless cancer showed up in one of the test or exams, I would finish the chemo regime regardless, this was an easy decision to make.  In fact, if cancer showed up while I am on this trial, I will be booted out of it.  Obviously, it would not have been working.

I sort of expect the same fatigue and lethargy to become the routine this next week.  I will just rest and sleep when I need to.  Not a problem.

I also screwed up the courage to ask the Dr. of the four from this area, how many have been able to continue the trial.  He said I was the only one.  The other three came into the trial with cancer present and it progressed, which means the chemo was not working.  With that, they are automatically out of the trial, unfortunately.  When he comes in to have the consultation and do the physical exam, he is much more personable with me.  Now I know why.  I guess I am his start patient.  I am sorry the other three have had to withdraw and I wish them well, although I don't expect they are having an easy time of it.

I feel fine today.  Last time it was Sunday before I felt the side effects.  Regarding the RA, something is working very well. With the 1st infusion, I was free of RA symptoms for about 5 days; 2nd fusion, about 10 days; 3rd infusion, 2 full weeks; 4th infusion the full three weeks.  I have no symptoms today so that is continuing.  I asked them if they knew which drug it was that was doing the magic.  They don't know but are anxious to follow me.  We're all hoping it is the Avastin, which is the biologic I will continue after the 6th infusion.  I am the only one who will initially know if that is the one working.  Keep your fingers crossed.

That's it for today.  Thanks for your terrifically good thoughts.