Rolling With It

     With more tests and a day to consult, the team came to a consensus of  Chris's current predicament.   Their conculsion...  hypocalcemia (low calcium). 

     At his last chemo infusion on the 18th, they started him on a new bone strengthener and also increased a current medication.   It took us a day or so to pick up the new updated Rx.  When he started having problems right after that, our first thought of what could be causing the problem was the increased med, not the new med.   The symptoms fit quite well and we spent last week trying to fix it, but apparently were on the wrong track.   The problem was the new med. 

      The new med, Zometa, is a bone strengthener that takes the calcium from your blood and adds it to your bones to help strengthen them.   Calcium is essential for strong bones, but it is also a key element that helps regulate the conduction of electricity in your body, which is essential for your heart and nervous system.  Bones essentially are the "warehouse" for calcium in the body.   Your body regularly is shuffling the calcium around to keep things in the right balance.  Myeloma is a bit like a rogue fork lift operator.  Taking calcium out of the bones, weakening them, and putting it in the blood.  High blood calcium levels can actually be a tool to diagnose myeloma. 

    Zometa is also used to treat high calcium, and takes about 7-10 days to really work.   The normal range for Calcium is 8.4-10.5.  They said for someone with high calcium (such as around 16-18) they would use the same medication, along with some other fast acting ones, to bring it down into normal range.   Chris's calcium was already low at 7.5 the day they gave him the med.    Somehow a mistake was made and he was never told that he needed to be taking calcium to "restock" the calcium in his blood.   I'm not sure yet how low it was we went to the ER, but after numerous IV's of calcium in the ER and at Hunstman, yesterday morning they still considered it "dangerously low".   In addition to the IV's, he also had a medicine cup full of meds to take yesterday morning. 

      Good news is that his levels were improving and I could see a night and day difference between Sunday and Monday.   The brain fog was clearing, his oxygen levels better, the prickly tingly feelings were subsiding.    The achyness in his jaw from his muscles cramping it shut.  His vision less blury from an eye that was being sluggish.   The chest pain improving, the debilitating cramps in all areas of his body were much less severe and frequent.   In hindsight, he realize he also been experiencing laryngospasms (spasms of the voice box) for a few days.   This can cause airway problems, so his trach likely saved his life.   For the past two weeks things were steadily getting worse with these and other side effects (sounds like a TV infomercial....but wait... there's more!)  He was and is still very weak, but was gaining strength and able to walk better.

      They wanted to keep him another night, but he pleaded with them to let him go home.  They had been doing labs and running IV's all night long, every two hours, so we both got very little sleep.    Appointments were already in place for him to do labs and chemo tomorrow so they would be able to still closely follow his calcium levels.   As well, his echo-cardiogram showed that his heart hadn't hadn't had any major changes and was doing OK.   When they got back the results they gave the OK for him to be discharged.  Pharmacy came and brought him the calcium he needs to take.   His calcium has a long way to go to get back to normal and the bag full of horse pills was very heavy! 
         

      I recently read an article called "The Things I Wish I Were Told When I Was Diagnosed with Cancer".    The whole article was great, but the part that really stuck with me was about your care team.  I can't even describe the sense of peace it gave me on Sunday when I texted Dr Sborov to let him know we were in the ER and have him respond almost instantly.   I know Dr's have lives outside of the hospital, but it worked out at that moment he could reply and it brought me so much comfort.   Of all the people coming in and out of our room yesterday, it was Dr Sborov, who we were most relieved to see.  Even though Chris was under the care of the inpatient doctors (who were great), Dr Sborov wanted to check on him personally and see how he was doing.   As well, I'm sure he and his team were part of everything that was happening in the background.   It was a great reminder that while there are so many hands (many unseen) working together to support Chris and his battle, Dr Sborov is a great

      I'm not sure who it is that made the mistake.   It would be very easy to be so angry with what just happened, but surprisingly instead there is just understanding.    Myeloma is so complicated, and each case is so unique.   We don't have a perfect care team, but we have a care team that is perfect for us.  They are trying very hard, and as part of that process mistakes happen.  This one set us back, but it hasn't derailed us from a treatment that so far is working.   It's going to take a while for Chris to recover, but for now we've got things going back in the right direction. 
   
    So while we are back to him being so weak he needed a wheelchair to get to today's visit to the hospital (something he hasn't needed since February) we're hopeful that this is just a temporary setback.   We're very grateful that this time was a short stay, and it ended up being the "better" of the three possibilities.  It sure felt a bit like rolling the dice with no hope of a winning roll. 

***For a dice analogy only a few people in my family may understand. 
This was very nearly an "oinker".  Things too close for comfort, that came close to losing it all.