Unexpected

   Last week we were thinking that the next few weeks would be busy with tests and possible t cell collection, yet a bit of a reprieve from the difficulty of the past month.  We were looking forward to a relaxing three day weekend.     Instead, after an appointment with his doctor we realized that we needed to take his recommendation.   In order to be strong enough for what's to come we needed to sacrifice our weekend to a hospital stay.   He's weak, tired and the myeloma is raging doing who knows what damage.   As well, this past round of chemo has caused him to yet again retain a lot of fluid.   About 60 lbs in the past 6-8 weeks.   We checked in on Friday and they are still vague about when he might be able to go home.   In addition to starting a new chemo (Pomylyst Velcade Dex), they have been quite aggressive with diuretics, which have caused his kidney's to be irritated.   His potassium spiked high so they were worried about heart issues and had him on "tele" (constant heart monitoring to watch for heart failure).   No hospital stay is pleasant, but this one has been pretty miserable and we are both so tired.   I feel bad because I know I've lacked the patience that Chris deserves with what he's going through.   It's not that I'm mad at him, just feel extra powerless sometimes to be able to relieve some of his suffering.   

     I've spent time trying to learn more about CAR-T.   In the online support groups that I'm in, it's something that is talked about frequently and with so much hope.   Many of the articles I've read have had similar optimism, but they also describe it as a "last chance".   His team hasn't said that to us, but we also know that "hope" is  very real factor in the battle against cancer and they are likely very mindful of that.   In a Q&A session with Dr Sborov recently, he talked about some of the new drugs that are being developed.   Multiple Myeloma treatments (and I imagine all cancers) are making great advances.   We live in an exciting and terrifying time.   With all the new drugs, they are still trying to out how and when best to use them, and things are constantly changing.  We will continue to put our trust in Dr Sborov and his team and pray that God is guiding his decisions.   

    It's very possible that one of our next steps is going to be a clinical trial.   A chance to try a cutting edge medication.   Something that fights in yet a different way.   I'm very grateful that this step doesn't seem as scary as it could be.   Many years ago God put in my life a friend named Rachel.   She was my visiting teacher when the only thing Chris was fighting was a brain tumor.   Of all places, she works with the clinical trials department.   Not sure if it will work out that she will be working directly with us if we end up in a trial, but I know how dedicated she is and can only imagine all of her co-workers are.

    So while today may be the Mondayist of Monday', we may soon be Pioneer's of our own forging a way though an unknown path.