Happy Birthday

      Our day started out with a trip to Huntsman.   We've been there so much lately that the people at drop off recognize us and know where Chris needs to go.  With his low calcium, he hasn't had the strength to walk in, and they are quick to grab a wheelchair and whisk him away while I park the car.    Today, for the first time in over a month Chris surprised me and said he could walk in.   I stopped at the Huntsman entrance and helped him get inside.   Having him using his cane again and making the walk on his own was a great way to start the day. 

        At our last appointment on Wednesday his blood counts were extremely low, enough for not just a normal flag, but a double low.   They gave him a nupogen shot to boost his white blood cells in hopes of avoiding an infection.   They also had him stop his daily chemo pill.   Having an unexpected break from that likely greatly contributed to Chris feeling well enough to walk in and it was nice that for the first time in a long time he's felt good happened to land on his Birthday. 

      Normally while in the waiting room, everyone keeps to themselves.   Today a man, slightly younger than Chris commented on his Chief's hat and then asked about his trach.   As we talked, we found out that he too has myeloma.   He is further along in his journey and has already gone through a transplant.   He's doing fairly well and it was fun to meet a fellow warrior. 

      They brought Chris back and his nurses had decorated his chair with streamers and decorated his IV pole with a Happy Birthday crown.    They spoiled him with lots of apple juice and Jason (his nurse most times when we go) brought him a six pack of Pepsi.   The staff at both infusion centers have become like family, so I guess it's only fitting that he celebrated his birthday with them.

       Good news when the labs came back.  His calcium is on the mend.   It's still low, but it appears the drug is done causing havoc.   They had said if things didn't improve by the end of the month they would have to look into other options for the low calcium.   That was a path we didn't want to go down since the most likely problem could be his brain tumor.  So, it's a huge blessing that things have seemed to normalize.   The levels were still low, but high enough that he didn't need a calcium infusion today and so we were free to go.    Unless something changes, we don't have to go back until Wednesday next week.   Hooray!   As well, his white blood counts are up slightly and he didn't have to get a shot.   His other levels have improved enough that he starts back up on his chemo pill.   Mixed blessing on that one, it makes him feel crappy but helps keep him around. 

      The walk in and out wore him out, so we spent the rest of the day doing simple things.   He hasn't had much of an appetite and so food has been a struggle.   When I suggested Hungry Howies, our favorite pizza place, and he was excited I knew that's where we were headed next.    We enjoyed a nice drive to Orem and then headed home.

      Our sweet neighbors brought over a loaf of bread hot out of the oven.   Then we took a nice nap.   Not your typical birthday agenda but a wonderful and needed treat.     Later John came over bringing dinner and we ended the evening with a visit from Reed who is back at BYU after being gone for the summer.

      The month of August didn't go nearly like we expected and we hoped to be able to do more this month to celebrate his birthday.   I was able to find him a nice Hawaiian shirt as a present, but hadn't been able to muster up the brain power to think of much else.   Everyone sending him Happy Birthday wishes throughout the day was a great way to remind him of how loved he is.   He sweetly told me that the most precious gift he could have was spending the time with me.    Fighting was the first thing on our agenda and I am so grateful to be here by his side.   He is amazing, tender, loving, creative, thoughtful, funny, sweet, hard-working, giving, dedicated, courageous and to put it simply...my everything.    Happy Birthday to the love of my life!

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. 

Déjà Vu

     Last week after being released from the hospital on Monday, we were back again on Tuesday for labs and Wednesday for chemo.  Thursday was luckily a day off from work and we both had a chance to just re-coup.   With a new "Super Saturday" event at work on Saturday I was digging deep to make it through the week.   However, Chris was slowly improving and we were grateful to have made it through a long week.   Chris was still pretty weak and tired, so we were back to sleeping on the couch and his amazing recliner.   I thought the lift feature when we got it wouldn't be something we would need for quite some time, but it's already been a huge blessing. 


     When he woke up on Monday feeling crummy and weak, I told him that he should message Doctor Sborov's team to let them know.   We weren't too concerned and figured it was just everything catching up.   For his daily chemo med he takes it for three weeks with one week off to allow his body to recover.    The last few days are the toughest, and often when his hemoglobin and other blood markers are super low.   We knew we likely wouldn't hear from them until the next day, but we were OK with that. 

       After trying better to describe what was wrong, they felt it was important to be seen, so we requested to be seen up at the main Huntsman.   I knew there was a pretty good chance he would be admitted so I grabbed the "go bags" I had been working on re-packing in the car and helped him out to the car.   He was so very weak and struggling, and I was so grateful for the timing of purchasing our new vehicle.   He slept comfortably most of the way and was able to slide out of the leather seats into a wheelchair at valet.    I was grateful the assistance in getting him where he needed to be. 

       Situated in the ACC they ran some labs, and did xrays and an EKG.    The labs came back and the culprit...calcium.... again!  His levels weren't quite as low as they had been a week ago, but still flagged as "LL".   All of the calcium he had been taking and the milk he had been drinking were not enough.  :P   It took hours of just waiting to get assigned a room, but they gave him an infusion of calcium which made a huge difference.   Not knowing when he would get a room assignment I decided to leave the hospital for a bit and get me some yummy food from the Pie.   Waiting ended up being worth the room, we got an amazing room!   It was huge (especially for a hospital room) and even had a separate sitting room with fridge, microwave and TV for me.   The rooms at Huntsman are much nicer than the UofU and this one takes the cake. 

      My brother came for a visit and shared pictures and videos of my cute niece.   Baby giggles are wonderful for the soul!   Then we settled in for what we knew to expect to be a long night.   Blood tests and calcium IV's every 2 hours, all night.   This time they had him hooked to a oxygen monitor which went off all night, anytime he would start to doze off.   Normal is 95-100, anything under 90 is low.   His would drop as low as the 60's last night, even while on oxygen.   Luckily we had a very attentive nurse and a respiratory therapist who were very concerned and worked hard to figure out what needed to be done to keep his levels from dropping.   We don't think it's calcium related just the joys of trach life.   The hot summer air is irritating and with the smoke in the air, his airway is likely very irritated.

    It was a long day with lots of people in and out all day, including my good friend Rachel who stopped by at lunch and brought us a treat.   Chris asked all day for them to let him go home and we weren't sure if it would work out.     However after one last "super powered" infusion (a different type of calcium with 3x the punch) and one last set of labs to wait for they finally felt comfortable proceeding with discharge.   Took a lot to get things in place and had he not been persistent from the beginning, I'm sure we would be spending another night, but we are so glad to have the luxury of sleeping at home.
 
      Today starts his week off from all of his chemo meds, and while we hoped to better utilize this "break in the clouds", we'll be grateful just to have time to re-coup.   He has a friend coming up from St. George who will be a great for his morale.   They want to watched his calcium levels more closely out patient (since the 3rd time is not the charm in this case) so we'll be back at the hospital soon.   But for now, we're very grateful to be home again.