Minehaha, Swoope, Wigwam, Beach View, Thistle.

Today is start of Cycle 3, week 3, day 1.  Started out with an early appointment with Dr. Sarriera.  10 AM to be exact.  So that meant leaving at 9.  That meant me getting up and ready by 9.  That meant an early day for me.  Especially since my Kyprolis appointment wasn't until 12:30.

Got to the Cancer Center around 9:40.  School traffic zones and normal back up of traffic at Lee Road and 17/92.  Registered and only sat down about 5 minutes and was called back to Dr. Sarriera's room.  Blood pressure (a little high on the second number), weight (OMG), bunches of questions.  Then Abby came in to review my case.  Had several questions for her to be discussed also with Dr. Sarriera before they came back together.  Lab looked good for last two months.  Will I be going another cycle?  Why is my vitamin D so low?  Will I every hear the word remission?  What about my immunizations?  No appointments for Kyprolis after this week?  And of course, Desiree??

She answered a few.  Probably will be another 3 cycles.  Vitamin D (the Florida vitamin) should be in the range of 30 to 96, mine 19.  Giving me a prescription 50,000 mg tablet to take once a week for 12 weeks and then to take a 5,000 mg over the counter tablet daily.  Retest of vitamin D level in 3 months.  No remission word yet.  :(  Will give me a partial response.   Immunizations will be done probably in two to three weeks.  My baby ones.  Desiree is doing okay.  Looks tired but happy.  Babies are great.   Bill and I miss her a lot.  Abby listened to my heart and off to get Dr. Sarriera.

Not as much of a smile as the last time Dr. Sarriera came in to discuss my Myeloma.  Shook hands with each of us and asked how I was feeling.  Okay.  Just my Friday, Saturday fatigue that gets worse as the cycles go on.  Started with saying that my labs all look good except the light chain kappa/lambda ratio.  It's on the low side.  Mine 0.1575.  Normal range  - 0.2600-1.65.  This low range means there is active Myeloma.  Last months test registered 0.1618.  Going down.  Dr. Sarriera wants to continue with another 3 to 6 cycles (3 weeks on, 1 week off).  Said there was never any chance at stopping after 3 cycles.  He will reevaluate accordingly with labs, appointments with him and scans.  During this time, he will order a Pet Scan before the end of the year.  Oh, joy.  Can you hear me freaking out already???  Also, discussed that I do not have any appointments for Kyprolis after tomorrow.  Explained he does these appointments in blocks of time so will get me back on my schedule.  Said he is more than likely going for 6 more cycles.   Hello 2018.  Talked mainly about the light chains.  Once he is happy that my cycles have done their job, will work in a maintenance plan for me.  Instructed Abby to get Pet Scan set up and immunizations scheduled.  Appointment done.  Little upset here.  Holding back tears.

Down from 2 floor to pharmacy on 1st floor to order more Dex and Cytoxin for my Cycle 4.

Up to 5LP to see if anyway I could get in early.  My appointment was at 12:30.  Now 11.  Registered for my for my lines and labs.  Once they were completed, Bill and I went to lunch on the 4th floor.  Then back up to 5LP around to wait for my 12:30 appointment.  Never took us back to my room till 1.  Then my bilirubin came back the highest it's been so far.  2.4.  Had to contact Dr. Sarriera for instructions as which way to go.  He was out on rounds.  Finally got his instructions, Kyprolis ordered at pharmacy, sent up to room, drip started, done and on the way home around 3.  I have to have labs done again Wednesday before my Kyprolis drip to check my bilirubin.

I talked with my oncology nurse, Stephanie, what I could do to help this?  One thing she said was being on the meds I am on and not drinking enough water over a period of a few days may be part of the problem.  Said you should drink in ounces 1/2 the amount of your weight.  So I guess I need to lose weigh.  Ha!   That's another problem to be discussed at a later time.

Each time we go to the Cancer Center, I like to look at the street names.  Minehaha, Swoope, Wigwam, Beach View, Thistle.  Orange, Kyle, Packwood, Zelma, Marks, James, Madeleine, Hazel, Red Bug Lake, Pinesong.   Some names of family and friends, some names that say Florida, some names that say Disney and some names that say home.  I love Florida.

Quote:

Sometimes it hurts and the only thing that helps are the gasps of air between the tears.