Joanie.

This week is so mixed up for me with the holiday.  My schedule of Tuesday and Wednesday treatments was thrown off to Wednesday and Thursday treatments.  So this is how it went this week.  Tuesday I made an appointment for Mom to get her nails done.  Told her I would pick her up, we would have lunch, she would have her nails done and then we would go to Walmart for a few things she needed.  Well, not!!  I got "the pain" in my side that I have had for years.  No MRI, CT scan has ever been found any problems.  This pain was probably the worse I have had.  Usually if I lay down, it will subside.  This one took a while longer to quit.  Had to cancel all of the above with Mom.  I made an appointment with a gastrologist.  Stayed home instead and actually spent most of the day in my sewing room.  My room that keeps me sane some days.  Even if I just sit there and look at my fabric stash, look at quilt patterns I want to make, look at the projects I have started and need to finish, just look around or just sit and stare.  Weird huh?  But my weird!!!

So yesterday, Wednesday the 5th, was my Darzalex day.  Had to be there by 8.  Took me back to the draw lab, accessed my port, good blood draw, drew my blood and sent to room 16 with Kelly.  Well, I remember her from another time and knew she didn't have any bed side manner.  Straight faced always.  No happy there.  Labs back around 9:30.  Bilirubin 1.2 (great).  Platelets 108 (great increasing).  No need to contact Dr. Sarriera to begin.  Premeds of Tylenol and Benadryl pills along with a Dex drip given.  Darzalex and Kyprolis meds mixed and ready about 10:00.  Dex finished and Kyprolis started.  A little wait to start Darzalex.  Down hill from there.  Kelly started the Darzalex at 100 mg.  I did ask and she said it was in the protocol.  Should have questioned more.  It was a 1/2 hour drip.  She came in after that half hour and did my vitals.  Blood pressure was up.  Started to set my next drip at 150.  Bill questioned as to why.   It was alway started at 25 or 50 during my previous Darzalex treatments.  Kelly move it back to 50.  Blood pressure down.  Then half hour later moved it back up to 100.  Then she went to lunch.  Stephanie took over for her.  Bill told her that we were not understanding why Kelly was doing the treatment as she was.  She checked and showed that Kelly was following the drug protocol and not MY protocol.  Stephanie review MY protocol and made a note saying "review patient's protocol when administrating Darzalex.  Kelly came back and asked what was going on and Stephanie explained it to her.  No emotions from her.  Finally got through the treatment with the adjustments Stephanie made.  I did say to Kelly that I sorry there was such a mix up and I didn't want to upset her.  Again, not even a I am sorry too.  No emotions.  Funny how we have never had any problems with the order of things for several months and with a lot of different oncology nurses.  Good thing Bill is on top of it all with me fighting in the background at times.  Advocates together.

Today, Thursday the 6th, I had my second infusion of Kyprolis. In and out in no time.  Emma was our oncology nurse today.  Emma first asked Bill how his leg was.  She seems to love Bill's sense of humor.    We love Emma.

No treatments now for a week and a half.  Actually nothing but still need to take my Dex on Tuesday.  Start back on treatments September 18th.  I love these breaks even though I may have some coming down off the drugs minor side effects.  I deal with these because this is our time of no drugs but Dex.  Twelve days of freedom.  Of course, these are weeks we have to make appointments for other stuff and even take a few days of nothing but relaxing and being lazy.

Known as Joan to most but to me she will always be Joanie.  Joanie and Harry are our friends from the Army.  Our friends from Germany and long time ago.  We still keep in contact even if it's a month or so in between.  I know I have blogged about them before but doing it again.  Tonight Joanie and I  had a nice long, needed talk.  Joanie is a breast cancer survivor and is now a care giver to Harry.  He has an immune disorder.  Please keep them in your prayers.  Harry has had a rough month with a problem with his leg cause by an accident with a ladder.  Has been in the hospital, had a MRI, leg bruised from ankle to his pelvis, hematoma, leg split apart and bled profusely.  Is now losing weight and has no energy.  On their way to John Hopkins tomorrow to see his doctor there.  Pray she can help.  Joanie, I hope I got all this right.

Quote:

What lies before us and what lies behind us are small matters compared to what lies within us.