Technology - Good and Bad

     New computer programs at medical facilities have complicated my life and treatment!  And here's my story as it relates to me.  At my appointment with local hem/onc doc following appointment at UCSF, I learned that the dose of my infused drug (Kyprolis) was to be increased.  This possibility wasn't discussed when I saw him at UCSF so I was a little surprised.  I sent an email to him through the "patient portal" to share some concerns I had regarding higher dose to verify that it would be ok to go ahead in my situation.  A response is guaranteed within 2 days which didn't happen.  Right after I saw my local doc, he left on vacation. Since the orders were already sent to infusion and I couldn't get a hold of anyone, I started the first 2 infusions at the higher dose.
     Also, in the midst of all this, I wasn't hearing from infusion therapy about getting my treatments scheduled. The nurse told me the day I saw my local doc, that I should hear the next day. Records had to go to financial for insurance verification and then to infusion therapy for scheduling.  After I hadn't heard anything for a week, I started making phone calls.  It turns out the computer in financial was not talking to the computer in infusion! This one week delay may cost me the opportunity to go to my niece's wedding in May! It was going to work out just perfectly and now I'm not sure how we're going to fit the two schedules, but I'm still trying to figure it out.
     The other issue that became apparent when I started this cycle, was how it was being administered.  UCSF doc had given special instructions regarding combining the two drugs I was taking since each had their own separate and different protocols. The protocol that was in the orders that 1st day were for single agent administration. So, I was getting more steroids with the infusion in addition to the oral dose, 2 days of anti-nausea meds (instead of just one day); also, pre and post hydration.  I had no choice but to move forward with what was ordered or further delay getting back on treatment again.  I did, however, refuse the post-hydration.  It is important for the Kyprolis to get flushed through the kidneys and I drink lots of fluids on my own so putting a lot more into my veins can overload me.
     When I arrived home from my second dose, the email response (8 days after my email) was waiting for me from my USCF doc saying he didn't intend to increase dosage, wanted treatment to continue the same. Told me to print his email and give to doc here.  I faxed it to his office so changes would be made when I showed up for next infusion. When I arrived I find out all that had been done is dosage changed, everything else the same.  The steroids were already mixed into the anti-nausea meds so another week with extra steroids (Dexamethasone).  The nurses are so great, though, and they know what my routine has been and were trying to help me as much as possible and still stay within their parameters of following orders.  My next appointment with my local doc was during the 2nd week of this cycle.  That's when I learned of the difficulties they're having with their new computer program.  It doesn't allow him to specifically tailor a patients treatment regimen.  When a drug is entered for a patient, it automatically puts in the protocol that they entered when the program was set up.  They're wanting everyone to use the computers rather than paper but the proper communication isn't happening.  I suspect something similar happened with UCSF doc's notes.  Dose escalation is standard protocol for Kyprolis.  My doses are kept at levels for management of my neuropathy.  My local doc is working very hard to get the powers that be to realize that treatment often has to be tailored to each patient and isn't always used according to standard protocol.
     I managed ok that first week but knew that the dose definitely had to go back to where it had been.  My neuropathy increased significantly in my feet, legs, fingertips, and around my mouth.  I was very off-balance for days and had to be very careful when trying to walk. I felt like a boat being rolled by waves. I did fall once, hitting the back of my head; but at least I was close to the ground getting something out of a box and didn't fall far or hit very hard.  The back of my head hit the side of a table as I fell backwards. Thanks to Steve's quick response with an ice pack, no blood, no big bump just a slight headache and sore neck for a day.
     Weakness from treatment has made it difficult to determine if back pain is from that or more problems with my spine.  It had been a year since my last MRI so doc felt we needed to take a current look at my complete spine.  It was already scheduled when I had my fall the day before. It was reassuring to know there were no significant changes from last year.  I do like their new computer program as the report was written in a very organized and detailed manner making it easy to assess exactly what their findings were.  Even though this info has been in other reports, this one listed each vertebrae separately, describing the issues for each.  It made me even more aware of how fragile my spine really is.
     Next on the list was a sleep study.  I haven't slept well for years and nurses have begun to notice that my oxygen levels are low and go even lower when I fall asleep during treatment, even to the point of setting off the alarm on the vitals machine.  My local hem/onc doc had been suggesting a sleep study for several months and I finally moved forward with that.  It required a trip to my primary doc for a referral.  I really like her and enjoy our appointments, but it is another day taken up with medical stuff and travel. I was surprised how quickly this all got put into place.  Saw her Thursday afternoon.  Sleep center called Friday evening. Saw doc there Saturday afternoon.  Did my study last night (Sunday night).  Of course, I had to take some meds so I would sleep long enough for them to assess me.  Nurse told me this morning they got what they needed without laying me completely flat during the night.  Said she didn't want to wake me and was worried the change in position would cause my back to hurt and spasm.  Since my fractures, I have to lay in a particular position to be comfortable.  And, if I lay flat, I know that my throat closes up to the point I can hardly breathe.
     My recent birthday was a chemo recovery day, but I was still celebrating having lived to age 65! I never thought that would happen when I was first diagnosed.  It was doubtful even a year ago when they discovered my bone marrow was so full of cancer and the 3 different treatment regimens they had tried over the previous 2 years had been ineffective.  I still count my blessings and am thankful for each day even though there are many when I am weak, feel lousy and can't accomplish very much.  I am reminded of the promise included in the children's song.  "....Little ones to Him belong. They are weak, but He is strong. Yes, Jesus Loves Me!"  I'm not so little anymore but illness reduces you to child-like faith!
     May you all feel loved during this month that celebrates Love! Thank you for the love and prayers for us, and especially the recent birthday greetings!