Insects.

My platelets came back as 94.  Yeah.  On to the new treatment plan to start on Tuesday, May 21st.  This plan as I mentioned before, will be reduction of all chemo.  Panobinostat reduced to 15 mg, Kyprolis reduced dosage (not sure what that is), Dex once a week only.  Started on the 21st.  Panobinostat, Kyprolis and Dex.  May 22nd, Kyprolis.  May 23th, Panobinostat.  May 25th, Panobinostat.  Several side effects hit.  Headache, sinuses, nausea.  Very fatigued.

Appointment with Dr Sarriera May 24th.  Abby came in first to talk with us.  She listened as I described the side effects I was having.  Told her I can manage them if that is all I have.  She ordered a nausea med for me to have on hand and take as needed.  Dr. Sarriera came in and we went over the same thing we discussed with Abby.  Mainly as long as my platelets stay up, we are good to go on this treatment plan.  I told him right now I have two options, this treatment plan and radiation.  Waiting on option 3 when we go to Mayo.

Anna, Dr. Sarriera's oncology nurse, made up a great calendar for me to get on track with especially the Panobinostat.  That is taken 2 weeks every other day each week.   Then off for two weeks.  Kyprolis - twice a week for three weeks.  Then off one week.  Corresponds with one of the off weeks from the Panobinostat.  Dex every Tuesday.

Desiree, my all time favorite nurse,  came to visit and brought a patient that has Multiple Myeloma.  She wanted to meet me, Barb, so when she come to our Myeloma support group meeting, she will know someone.  Hope to see her June 10th.  Desiree, alway looking out for me.  Love that girl.

AND OF COURSE went for my chemo today May 28th, platelets dropped to 22.  No chemo once again.  Nothing until we see what my platelets show on June 4th.   Right now, Bill and I are not in our happy places once again.  This up and down and up and down with this ugly disease has not been fun.  We will remain positive but need time to accept what this ugly disease has brought to us now.  Ugly, ugly Myeloma.  Ugly, ugly disease.  Oh, I had already taken my Dex and the Panobinostat.  I should have waited until the labs came back.  I usually do.  Just slipped my mind.  Also, have a bit of edema.
Feet and ankles are swelling.  Was given signs to watch for.  Bill has been making me a water bath with Epsom salts with lavender.  Then rubs them with Juniper.  Helps a lot.

Had a great day on Sunday, May 26th.  Matt, Sasha and Ellie and Michelle and Gery came to our house and we had a wonderful picnic.  Bill grilled chicken and sausages.  The rest brought appetizers, Mac salad and beverages.  I was able to hang with them all day.  Play a bean bag game with the girls and even got in the pool with Ellie.  Did I say how wonderful this day was for me?  Great conversations with Michelle, Gery, Matt and Bill.  Great listening to the laughter that stays in your heart of my granddaughters.  Just a great, wonderful day if I didn't say it before. ;)

Sasha and I were playing a game where you throw a bean bag into a hole in a slanted board.  The song "School's Out for the Summer" came on the radio.  I was singing along with it to the parts I knew.  I missed a part and asked Sasha what they said.  No more insects was her answer.  I couldn't quit laughing.  She laughed with me a bit and said "Well Didi, we do have cock roaches in our school".  Love me some Sasha.

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Prayer is the most important conversation of the day.  Pray with me for a cure for Multiple Myeloma.