One Day at a Time

     This morning driving up to Huntsman we got to watch the sunrise three times.   As we would alternate between East and North it would dip below the horizon and rise again.    Because of all of the problems since the last infusion, this visit had me more nervous than normal and with each sunrise I wondered what today would bring.  Would today be a day when we wished for a "do-over" or would it just be another day in a life with an uncurable cancer hoping for the best. 

     Normally we do labs and get the results back for his myeloma markers a few days before our visit.  Because of being in the hospital we were behind in doing these and they didn't pop into our online portal until this morning.   I only had a moment to look at them and one of them had me a bit worried.    I worried on the drive there that today would be the day the tell us that DRd is no longer working.   Myeloma is sneaky and smart and mutates around medications.   When you run out of medications that work, you run out of options and the timer runs out.

      I won't leave you in suspense, the good news ... it's still working.   The lab test that I was looking at (called an m-spike) is a pretty common measurement tool in many myeloma patients, but doesn't really apply to Chris.   The test is actually picking up on the Daratumamab.  The kappa and lambda chains, and their ratio, is still all in normal range. 

      Unfortunately the bone strengthener they gave at the beginning of his last cycle is still causing problems.   Despite the two stays in the hospital where they gave numerous calcium infusions, 6 daily calcium horse pills and another calcium infusion on Monday his calcium is still low.   After his Dara infusion today, they did another calcium.   They also want to follow it more carefully, in hopes of keeping him out of the hospital.   So they set up blood tests and infusions for the rest of the month.   Hopefully the Zometa will be out of his system. 

      His white blood cell count has also been very low.   He got nupogen shots on Monday and Tuesday to help boost them.   These were the same shots they gave him to get ready for collection, and they cause his bones to ache, but today's numbers looked better.    His hemoglobin levels are also really low, which is probably also contributing to him feeling crummy.   He was on the border of needing a blood transfusion on Monday, but the last couple days of no daily chemo pill helped them bump back up.   The decided to slightly lower the dose of the chemo.

      Today was the start of cycle #5 of DRd.   Unlike the previous cycles, it felt as if we've made a huge step back.  Instead of only being at the hospital every two weeks, tomorrow will be our first hospital free day this week and our schedule is filled with appointments until the end of the month.   But hopefully by his birthday at the end of the month he will have turned a corner with the calcium and be back to gaining strength.   We were enjoying being able to think a little bit further than one day at a time and plan some fun things.   But for now we are back to just looking and surviving the next day.

      We are grateful to be spending our night back at home.   We are grateful to have Dr Sborov and his constant effort to see the big picture.   I am grateful for the opportunity to sit by his side and provide comfort in any way I can.   I'm grateful for the countless people at Huntsman who noticed how he had to brought to infusion in a wheelchair instead of walking in and were immediately concerned as to what had changed.   We have so many people helping us in this fight and helping us to survive.