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.   

A Million Little Things

   

    We knew going in that this chemo (SeliKD) would be tough, so we found a show that we could watch to take our mind off of it.    We probably weren't successful in doing that, as the show that we picked "A Million Little Things" ended up being a show about friendship and loss, in which two of the characters battle cancer.   Everyone's battle with cancer is different, but it was interesting to see how they chose to depict it.   Some things we felt were fairly accurate and others missed the mark.  The theme of the show, friendship and relationships with others was complex just like life.   While we trudged our way through yet another chemo, it again was amazing to us to blessings we have from our friends and family.   With numerous moments these past two moments of people showing up in our life at just the right moment.   Text's from family and friends lighting up a particularly tough day, surprise packages or cards in the mail, a hat from a concert Chris couldn't attend, pin from a particular Golf Tournament, delicious treats from a neighbor, simple chats about Star Wars and other funny things. One favorite moment was when a nephew sent a video of one of his kiddos saying "Unc-Chris", the timing was impeccable and it brought tears to our eyes.    Throughout this journey and especially these past two months there have been a "million little things" that have helped us at just the right moment and in the right way.    Thank-you!

    The first month was only Krypolis and Dex and was tolerable.   Labs showed that just those two wasn't enough and knowing it was the heavy hitter we hoped that adding Selenixor/Xpovio would start things trending the right way.   He started it the end of June, and it has been a beast.   July so far has been rough.   Even with all the preventative medications that we added, the side effects have been miserable.  We don't even want to think of what it would have been like without them.   This week was the 3rd week of the beast named Xpovio and we wondered if we could survive another week or cycle of it.   His light chains came back yesterday and they were even worse than last time.   As well, even without the PET scan which was planned for later this month we can tell that the masses in his right leg are likely growing, and the mass on his upper left abdomen is back, probably about a centimeter in size that we can feel.   We met with Mary today and she agrees.   This treatment did not work.   We were both very relieved when she said he could skip the dose that was planned for next week.

      So here we are at the end of the  "farsee" looking to what comes next, looking a bit ahead.    They are consulting about what chemo will actually come next, but whatever they decide it will be considered a bridge chemo.   Something to hold him over until the next big step, it's a big one and not what we were planning for.   

 

    He is being given the opportunity to do a treatment called CAR-T.   It is an innovative and fairly new treatment.   It's only recently been available at Huntsman, and slots for it are extremely limited.   Many patients often travel out of state to be able to participate.   It's somewhat similar to a Stem Cell Transplant, but even more complex and very personalized.   It's an incredible opportunity.      

    Pending testing and insurance approval, in August sometime, Chris will do collection to harvest his own cells.    They will collect T cells which are are part of the white blood cell system  (The video below is short and very fascinating).   They are kind of like the defenders of our body that are trained to be able to fight. These cells will be sent to a lab where they literally put a receptor on the T cell, called a Chimeric Antigen Receptor.   Those T cells are now specially trained to recognize the cancerous myeloma cells, will go and find it and and help destroy it. It essentially trains one's own immune system to destroy cancer cells.   Pretty crazy, right?!   There is more that I'm sure we'll learn and try to share.  It takes about a month for them to create the trained cells, but the cells will be transplanted back sometime in September.