Champa

Not sure if I will be starting the new drug Darzalex next Tuesday.  I received my schedule for the following Tuesday and my Kyprolis was not scheduled along with the Darzalex.   Plus the Darzalex was only scheduled for 6 weeks.  I emailed Desiree for the phone number of the schedulers to see why.  Call my scheduler (more about her later) to see why it wasn't scheduled.  She explained to me there was a hold on my treatment.  Once treatment orders are sent to the schedulers there is a nurse manager/reviewer that reviews the treatment drugs.  Seems that Darzalex along with Kyprolis is not a combination of chemo meds that are FDA approved for Multiple Myeloma.   Darzalex along with Velcade or Revlimid has been approved.  Velcade caused my neuropathy and I am allegoric to Revlimid.  This finding has been sent back to Dr. Sarriera.  From what I understand, the ball is in his pocket.  I haven't heard anything yet.   This hasn't even been sent to my insurance company for approval either.  

My scheduler also explained why she made appointments for my infusion.  She wanted to make sure I had chair time.  She had me scheduled for 8:30 AM every Tuesday for the next several weeks.  Because of the way this drug is administered, early morning appointments are necessary.  This infusion of Darzalex may take more than 4 to 5 hours.  Won't know until I do the first one in the hospital on the 8th floor.  Kyprolis wasn't showing on the schedule because she stopped due to the reviewers findings.  What a mess!

Meanwhile, I have been enjoying being off chemo for over 2 weeks now.  I do know that I can feel some reaction of coming down off the drugs.  But I do have a little more energy, more pep to my step.  :)  Did some furniture store shopping with Kristi yesterday.  Then had lunch.  Been awhile since we have done that.  Was nice.  Wish Kerri was here to go with us.

We missed our support group meeting on Monday.  I hate when that happens.  Was doing a 24 hour collection.  I enjoy those meetings so much.  Found out that Benn did a surprise visit for a bit.  That made me even more sad that I missed it.

My scheduler's name is Champa.  She has worked with me since day one.  Knows I hate early morning appointments.  Always schedules me for the 12:30 or later appointments.  Has several times, if she would have to call me for some reason, taken the time to talk with me to see how I am doing.  Yesterday when I called, I asked her if she had a few minutes to talk.  Champa responded that for me she would take the time and she immediately asked me how I was feeling.  We talked a bit about me and then I asked about my schedule.  She explained what was going on, as explained above.  Then I teased her about the 8:30 AM appointments.  We laughed about them.  I truly need to find out where her office is and go meet Champa.  Yet another employee of my Cancer Center that has help make my journey a bit easier.

Quote:

Sometimes when I say I'm doing okay, I want someone to look me in the eyes, hug me tight and say "I know you're not".