Halloween Fright!

      As you can imagine, the events of last year have been fore front in our mind this month.  We each have re-read the blogs entries, often with tears streaming down our face, trying to figure out just how we survived.    Earlier this week were talking about the tragic events that led to us being locked down at Huntsman the night before Halloween.   When a similar event led to things being locked down again, we were so grateful to be safe at home.   What a crazy world we live in!   However, much to our surprise, here we are again almost exactly one year later in a room facing the courtyard that held so much fear.   Luckily the darkness outside isn't terrifying and there are no helicopters searching.   Instead however we are again facing a familiar demon. 

      Chris hasn't been feeling well for the past week which is sadly pretty typical.   Today is the start of his week free of chemo and during the last week he always feels pretty crummy.   We are trying to learn to recognize and be sensitive to different symptoms and this felt different.  He's been very weak and had no energy.   We thought perhaps he was low on hemoglobin again and likely would need another transfusion.   However, when you feel like crap, it's hard to sometime pinpoint what's wrong and how it's different.    When he started to have lower back pain over the weekend we knew something was off and reached out to his team on Monday.   They were able to schedule labs and today we went to Huntsman in Daybreak to have them drawn. 

       They came back pretty quickly and among other things his creatinine is 4.5.   He's in kidney failure.   :(    Instead of being transferred across the hall to the ER we convinced them to just arrange for us to go to the ACC (ER like department) at Huntsman.   We figured the next step would be being admitted and riding up in our car was much preferred to an ambulance.   Once situated in the ACC, Dr Sborov stopped in to see us.   They are running lots of tests and we'll hope to know more in the morning.   However we think that the changes the kidney doctor made to his meds last month have caught up with him and have stressed his kidneys.    Less than a month ago they ran his myeloma labs and they were good, so Dr Sborov doesn't think it's that the chemo has quit working, more labs tonight will hopefully confirm that. 

     We didn't even actually see a Dr in the ACC and were moved to his room about shift change time.    When the new aide came in, he not only recognized us from our visits to Huntsman this summer, he came right over and gave me a hug.  While I'd much prefer that Huntsman wasn't the place "where everyone knows your name", it does provide a bit of comfort to have a familiar face providing care and helping Chris. 

     So while we hoped to be at home tonight celebrating Halloween and greeting the ghouls and goblins on our doorstep we're hopeful that they will be able to figure out and resolve the issues that brought us here.   It will likely be a long night. 
     

20% or 25% or 33%

One year ago today, I was told that I had cancer. In true Chris Carlsson fashion, I had to get an incurable, rare blood cancer, that you can't surgically remove. At the time, I was told I had 3 to 5 years left, as per average. This number still haunts me.

20% or 25% or 33%

That is how much of my life was used up in this cancer-versary. I look back and all I see is a year of pain and doctor visits. That is, until I look deeper. I was able to spend a lot of time with my sweetheart, my bride. Thanks to a few miracles and miracle workers, she was able to be there with me, for every poke, stab, draw, cut and drill.

20% or 25% or 33%

One great part is being able to still work. My work has been very understanding and very cool. I have also made a few great friends and have learned to let people in. I am a pretty private person, but I feel it is good all around to open up, let people in a bit. If people ask, answer them and be honest. It is not easy being in this predicament, but if you let people who are will to help shoulder the load, it actually can become a little manageable!

20% or 25% or 33%

The hardest part, in reality, is the pain. I cannot take ibuprofen, and that is my go to. I am sure if I pushed, I could get a stronger med, but with the recent "crisis" in the news, doctors are VERY hesitant to grant the wishes of a pain medicine, so I pass on it just so that it doesn't cause problems. My theory is, if the pain is there, there is a problem and it needs to be fixed, not covered up.  So I deal with it. Every single day. And it is always moving. See the picture, I love this.

20% or 25% or 33%

The victories! Oh man, the victories. So if you follow me at all, you would know the best current victory was getting the artificial trachea out. It was a surprise move and came out of no where. We went in looking at surgeries, and left with how to deal with a hole in my throat. It healed quickly and I just went in to a follow up appointment, and this is his words. "Well, everything looks great. Maybe I will see you around the halls sometime?" and with that, I learned I do not have to see him for my throat again. Obviously, if something goes horribly wrong, but, I am all about graduating away from doctors. This week at another appointment,which was an iron infusion. Because my port had to be accessed, they drew labs for my calcium infusion. While waiting, my doctor's nurse came running in and was all, "Did you see the numbers?" and out of breath. I said no, but I am hoping they were good. My calcium was actually normal. His words, not mine. If you have been following, you would know my calcium has been bad since they gave me a nasty infusion in July. I finally recovered. Sweet victory!

20% or 25% or 33%

Having realized I may have spent a third of my remaining life fighting this, and running from appointment to appointment, and shot to shot, and infusion to infusion, and.... well, you get the idea, I have decided I need a bit more balance in my life. Getting my trachea out has been huge. Having energy again because my calcium is normal has been very good.  Now, I think I want to have a little fun. Some shenanigans. Some adventures.

20% or 25% or 33%

So, if you realized you had 80%, or 75% or 66% of your life left, what would you do different? Travel? Have fun? Experience new things? Well, there is the challenge. Before 2020, how many new experiences can you get done? As hard as it is to travel and get around, I really want to have a bit of fun before I move on. Who's with me?

A Lot Can Happen

     While almost three weeks ago we celebrated our 18th anniversary, we are now approaching a different anniversary of sorts.   Thinking back most people have a date when they sat down with a doctor and were told the words defining words, "You have Cancer".   We never really heard those words.     
     We were told instead,  "We don't have enough information to make a diagnosis, but we suspect you have multiple myeloma"  and  "We need to figure this out."   We are "Fairly Sure" or "Fairly Convinced".  Because of an ill timed weekend waiting for test results, our chances of getting a 100% diagnosis never happened.   Just like when choosing your spouse, sometimes the difference between being "fairly sure" and 100% certain is a monumental difference.

     We did have a bit of warning that something bigger might be coming.   Having started dialysis just a few days prior, Dr Cho sat down with us and tried to petition with us to allow Chris to get a biopsy of his kidney's.   After all that he had been through he was frustrated that no one could explain to him how was in kidney failure but not experiencing the symptoms of kidney failure.   He was insistent that they work on getting him released.  After that another doctor had slipped up and said something about his diagnosis but I didn't catch it. 
       On the 19th, two weeks after being admitted to the hospital a Doctor with Huntsman embroidered on his white coat showed up to to talk to us.   For me it was then when I realized what the next step was. 
      He talked with us for a bit then returned later with his boss.   That's when we met Dr Sborov for the first time.   They must have known they needed to bring in the big guns to convince Chris to stay in the hospital and allow them to do more tests.   Looking back I'm very grateful that at that moment Dr Sborov was the one who came, because had it been the other myeloma doctor (whom we met later) I'm not sure that Chris would have been convinced.   He helped explain that if it was what they suspected every day that past where we didn't start treatment was injuring his kidney's and increasing the chance of being on dialysis permanently.    He needed to run more tests to be certain and to start treatment.    Dr Sborov wanted him to be safe, and that couldn't happen at home.   Being inpatient also meant they could get the needed tests done more quickly.   It was a lot to take in.   And if that was not hard enough to swallow, one of the last things he told us was was even harder to hear... "it's incurable". 

      Because of an ill timed weekend and the difficulty of coordinating dialysis with biopsies, we never really got that 100% diagnosis.   It wasn't too hard of a decision to accept that they wanted to start him on high dose steroids.   The next one however carried more risks and potential problems if they were wrong, but he consented to start another drug (Bortzemib).   When a new week brought a new doctor in charge of his care things changed faster than we were ready.   Without any warning or prep, the full on chemo (Cyclophosphemide) was administered.  I had gone to work and returned just in time.   His nurses were all gowned up in special gowns, gloves and face masks and a hazmat container was stationed in our room.   It was frightening. 

       Now here we are a year later.   Facebook reminds us regularly of memories from last year and we've both been re-reading entries from the blog.  They are so many feelings.... terrifying, encouraging, uplifting, and humbling.  He had been admitted to the hospital on the 5th, and on the 19th is when we met Dr Sborov for the first time.   So much was crammed into that month that it feels like a lifetime.   The risk of starting chemo was worth it and it paid off.   Being able to finish dialysis was and is a huge victory. 
   

      Compared to last year at the time, life is better, but it's come at a price.   Chris has endured so much and yet very rarely complains.   He strives so hard to be cheerful, but often I can see the pain hiding below the surface.   One day when I asked him how I could help he let it slip how hard it was to be in pain constantly.    Because of his kidney's he is discouraged from taking most pain meds, even ibuprofen.   Tylenol is the only thing he's can take, and most times he skips it because it really doesn't help.   From neuropathy and painful swelling in his feet and legs to persistent headaches, there is usually never a moment when he's not in pain of some kind.     I'm amazed at how hard he works to still be cheerful despite so many reasons he has not to.

        The most recent pain has been from a rare side effect from Zometa; the drug that has caused so many issues with his calcium.   A boney growth has formed inside his mouth.   It's big enough that it's broken through the gums and has been rubbing his tongue raw.  It's almost like a spare tooth growing in. 
      We joked yesterday at chemo that someone mixed the orders up and it's a tooth growing the wrong direction on the wrong side of the mouth.    Even though we had taken care of all of his dental issues earlier this year, as preparation for transplant, his teeth have decayed from all of the different medications.   It has caused a bridge to fail.  In order to fix it, he needs an implant.  Even though he only had one dose, Zometa can make doing dental work very challenging.   However it's also likely that an implant would fail.   Thinking we wouldn't have time to go to the dentist much this year, I made the mistake of picking a lower dental plan.  Whoops!  At the time I had no idea that myeloma can also wreck your teeth.   There's no doubt about it, myeloma sucks!


     The good news is that yesterday was the start of cycle #7 of Daratumamab.   His myeloma labs still look good and what we are doing is working.   Today we are at both the UofU and Huntsman.  At the U we met with a kidney doctor, his kidney's are doing good.   He suggested a change to a few of his medications.    After that we came back to the infusion room at Huntsman for his first ever blood  transfusion.    He's been right on the verge of needing one because of low hemoglobin levels (anemia) for many months.   A "normal" person is considered anemic when their hemoglobin is below 13.5.  Chris is below the treatment parameters of 8.0. They also did an iron study and his iron is very low.  From what I understand, hemoglobin are the red blood cells that help transport oxygen in the body.  Iron is an essential ingredient in producing them.    It's something new for us to learn about and understand.    The good news is that his calcium has been doing better and he hasn't needed infusions the past few times.   I guess we'll be trading calcium for iron infusions for the next few months. 

     Looking back it would be easy to just see only the difficulties, trials and sorrow.   However, along the way there has been so much more.   Much love, much compassion, much growth, and also multiple miracles.    It is these things that carry us forward.  We are grateful that we took that leap of faith and started treatment, and even more grateful that it's working.    We hope and pray that it will continue to work for a long time.   But for now, we celebrate that tomorrow is another day.  (One without a Dr's appointment, hooray).

   
     

The Roller Coaster Ride

      On Thursday Chris's surgery lasted about an hour.  The update from Dr Smith said that it was very difficult to get him intubated.   However the rest of the surgery went well and I was soon able to see him in recovery.   He was on bi-pap but breathing much better.  Because of the risk of bleeding, they decided to keep him overnight for observation.   Something Chris was hoping wasn't needed, but it was better to be safe than sorry.   Unfortunately it was a very busy day for surgeries and the hospital didn't have any rooms available.   Having a trach is uncommon and many area's aren't trained or able to accept a trach patient out of safety.   We take care of everything with his trach, but they can't make an exception and put him where people aren't trained to help in an emergency.  They said he likely would have to spend the evening in recovery tucked in a corner with the drapes drawn.  When he petitioned to let him go home, Dr Smith insisted that he stay and they worked harder to find a room.   There was a room available on the ortho floor, but they wouldn't take him because of the trach.  Luckily they finally figured out there was a patient on another floor that was actually there for an ortho procedure and so they moved that patient, then Chris got that room.   We finally got to his room about 11:30.
 
   Night went about how nights in a hospital go, not much sleep and an early morning with shift changes.  In the morning things with his trach didn't seem to be doing well and he wasn't able to get air very well again.   The ENT resident came in the morning for rounds and did a scope.  Sure enough even though the ties were super tight, it had slipped out of place and he wasn't getting much air through his trach.   The surgery hadn't worked.   They said he most likely would need to go to the OR again to change for another trach.   Having just had breakfast and OR time typically always requires fasting, we weren't quite sure if that meant we would stay another night and do the surgery tomorrow or have to return next week.  As a kid I loved riding roller coasters, but as I got older they lost their thrill.    Being on a roller coaster full of difficult medical challenges is a ride no one wants to be on, and this latest loop of made us wish desperately we could get off.

     A while later Dr Smith came in and discussed our options.   There were so many things to consider.   Because of the bone structure of his skull and a large tongue, his airway is very small to begin with.   In fact almost every time we meet with anesthesia prior to a surgery you can tell they are panicked about the complexity.   It's primarily their job to keep him safe so the surgeon could operate.   Needing a trach that was MRI compatible due to an upcoming MRI to check on his brain tumor limited our options.   Dr Smith proposed his suggestion and we debated about the pro's and con's, trying to know what the best decision would be to move forward.   We weren't quite sure what to do, so we asked if he could confer with Dr Brown, his pulmonologist (lung doctor).  It gave us time to discuss alone what we should do.   There was a lot to consider and a big decision.   Chris shared with me that he was confident in what Dr Smith and Dr Brown would choose.   A close friend had shown up on Thursday prior to his surgery while I was still at my meetings and offered Chris a blessing.   Because of what was said, Chris was at peace and it also gave me the peace to accept their recommendation. 

     When Chris was diagnosed with his brain tumor five years ago, it was like we were handed a heavy book with information to factor in when trying to make important decisions.   When he developed the tracheal stenosis because of the surgery for the brain tumor, an even bigger book was added to the pile.   This one even more vital and something we needed to carry with us always.   Not just for us, but also for us to educate others, including those in the medical profession.   So many of the people treating him were unfamiliar and afraid of a trach, we were too at first.   We often were educating even respiratory specialists.   Being educated, asking the right questions and being prepared with supplies for the trach has been essential in his survival.   The additional complications that came with the diagnosis of myeloma has added more heavy books to the stack and our pile was heavy. 

       A couple hours later after discussing with Dr Brown, Dr Smith returned.   They both agreed on the same treatment and so we felt comfortable proceeding.  Moments later the trach was removed.   Yes, you read that right.  Removed.   No additional surgery, no new trach.   We have been told on several occasions that he would most likely have a trach for the rest of his life.   In just one quick motion it was gone.   Dr Smith is astounded with the stenosis in his airway.   He thinks the treatment for his cancer could also be helping to soften and improve the scaring .   He didn't have to treat it yesterday and he feels comfortable with the tracheotomy closing and for Chris to return to breathing through his mouth and nose.    That heavy book which we've been carrying around for the past 18 months was suddenly and unexpectedly taken and placed back on the shelf.   Still there as a reminder for us to so carefully guard his precarious and precious airway, but miraculously not a burden to carry with us everywhere.     The wound will take time to heal as they do not stitch the stoma (opening) closed.  Instead they simply let the body heal on it's own which will likely take several weeks.  Relearning how to breathe normally is something he was constantly reminding himself of the rest of the day. 

     As you can imagine, it's quite a shock and we aren't sure when it will sink in that it really happened.  We spent the rest of the day thinking about how things will be different, and honestly easier for us going forward.  One obvious one, talking will be so much easier.   Among one other biggest improvements,  able to shower without fear of accidentally allowing water in his trach.   He'll also be able to go back to wearing some of his favorite shirts.   Last year we changed his entire shirt collection for ones with button up necks so that things weren't tight and irritating or blocking the trach.  We had contemplated trying to cut and sew many of them into a v-neck but had never had the time. 

       They got things rolling for discharge and eventually we were on our way home.   We picked up a prescription for an antibiotic as they discovered he had an infection.   Then took a nice nap at home.   Chris hasn't had a decent hair cut since last May since inhaling any small trimmings directly into your lungs is typically best avoided.   Being able to put a hot rag on his neck as I finished was a moment of pure happiness for both of us.  Today we are back at Huntsman for another calcium check and possible infusion.

        Spending most of the day in the hospital on our anniversary was obviously not our top choice of activities.   As well, because of the events of the past month we both struggled and failed to come up with a gift.   However one very precious and unexpected one was provided for us.  Celebration isn't always about gifts, fancy dinners or exotic locations.   Sometimes it's simply sitting side by side, holding hands and breathing. 


   

Just Breathe

    Three weeks ago when we reached Chris's birthday and he didn't need an infusion of calcium we thought the hypocalcemia problems were behind us.   That hope was short lived when the next week at chemo his calcium was low again, enough to need an infusion.  Despite the worry that settled into the pit of our stomach,t hat weekend we were able to enjoy a birthday dinner that my parents brought.   As well we also attended the light festival (where they launch lanterns into the air, like Tangled).  Chris works for the company that does the lights festival and it was nice to have one close to home that we could attend, it was a beautiful evening. 

     The following Monday we were back at Huntsman for more calcium.  On Wednesday met back with his team to start Cycle 6 of his current chemo.   They are perplexed by his continued low calcium and ordered more tests.   The Zometa should be out of his system.   For now they are thinking the low calcium is being compounded by very low Vitamin D.   It's not a quick fix and takes about 8-12 weeks.   He started taking vitamin D about a month ago, so low calcium is likely our companion for another month or two.  It could also be a sign that his brain tumor has grown, and so next week we are hoping he'll be able to do an MRI to get an update of it's status. 

    With the horrible fires this summer, the smoke has been made going outside tough and Chris's breathing more difficult.   However this week on Monday night things to take a sudden turn for the worse.      Chris was struggling and grasping for breath.  We tried everything we could think of and nothing seemed to help.   It brought back so many memories of early last year   He was struggling and fight so hard for something that is so easy for most all of us.   As we headed up to the main Huntsman for another calcium infusion Facebook popped up a reminder that a year ago today we were meeting with Dr Wong (the ophthalmologist) and a simple post that said "Please let it be fixable."  More memories of last year at this time and all of those struggles took my breath away.     The thoughts of last year at this time are never far from our mind, but this week they were smacking us in the face.

       His calcium was better, but still low enough to need an infusion.   It gave us time to make arrangements for ENT to see if they could help with his trach.   When we got to the ENT clinic and they did a scope, the problem was pretty apparent.   At the end of his trach is a growth, called a granuloma.   It's a collection of immune cells and the body's reaction to a foreign object it can't remove.    It's blocking his trach and rendering it practically useless.   One blessing, the stenosis (narrowing) of his airway is at least not as bad as it was last May, otherwise the situation would have warranted emergency surgery.  He's able to get some air through his nose and mouth, but he's adapted to breathing through the trach so trying to retrain his body to breath normally isn't easy.   During the day it's bearable, but nights are torture for both of us as he struggles to breath and I lay there listening to him struggle.

       Dr Smith was completely booked and the earliest they could squeeze him in was this afternoon.   This week at my work is our yearly manager meetings.   They are something I look forward to every year and I thought I might end up missing.   But with Chris's encouragement I went yesterday and this morning.   It was a blessing.   While meant as a uplifting work message as a manager, they shared this video about the importance of coaching.   The kind words of a leader just moments before talking about not being able to imagine the "load I bear" was fresh on my mind.   The trials that we are facing together are unbelievably difficult and we each are carrying a difficult mental, physical and mental load.     I am grateful to have so many cheering us on and because of others we have been able to go much further than we ever thought possible.   

      Today before leaving my co-workers/friends all gathered in prayer offered specifically for Chris, me and the medical professionals helping us today.   I'm so lucky to work for a place where this is not just a possibility, but was offered by my boss as something that they would like to do.   A room full of people, surrounded in love.    Sensing the tears streaming down my cheeks, an arm of support was slid around me.   It was a powerful moment that left not just myself and many other's in tear's.   More hugs were offered and I was soon headed home to pick up Chris and get headed on our way. 

      It really should be a simple surgery and Chris should be breathing much easier again soon.   There have been so many other messages of love today and we've been strengthened and blessed to be able to bear them. 


     

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.

   

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.

Twists and Turns

    Just when things seemed to be doing well, we reached another bend in the road.  Shortly after his last infusion (about a week and a half ago) Chris started to have some bad reactions.   As the past week progressed they got worse.   One of his eyes was sluggish, he would get cramps over his whole body, he was dizzy and unsteady on his feet.   Last night he added a few more symptoms to the mix.   Chest pain and trouble breathing. 
     This morning we reached out to a friend in the ward who came over with our neighbor and gave Chris a priesthood blessing.   The words spoken were calming to my soul.   I'm fairly used to the hospital life, but the idea of going back facing additional complications was too much to bear.  Last time we were in the ER was a few days before he ended up in the ICU in October.   It was a frustrating experience and one where nothing was accomplished and we were sent home with no help.   We had been to see multiple other doctors that week and felt like the ER was finally the place that would get answers.  Knowing in hindsight that he was likely in kidney failure then, it has been a fear of ours to return to the ER with all of the additional complications that have been added since.   But the blessing promised that God was aware of us and what we are going through and that we would be in good hands.
      It was a slow and quiet day in the ER.   They ran lots of tests and there was lots of waiting.   Lots of blood work, multiple EKG's and even x-rays.   Our nurse Chris, and our EMT Mike were great.   With chest pain the obvious concern was a heart attack, and a blood clot was also on the list of possibilities.   The EKG's were slightly different than his previous one, but his troponin levels (an indication of a heart attack) indicated that he wasn't likely having a heart attack.   His blood levels showed his calcium levels were very low and they gave him an IV of Calcium.   They decided that it was in his best interest to be transferred up to the bigger hospital.   So after a long day of waiting in the ER, he was transferred by ambulance to Huntsman.   Because last time he was transferred via ambulance it took a while for us to get connected back together again, we asked and they were willing to let me ride along.   Scott (the EMT) and I had a good conversation on the way up and I'm sure the view from the front seat was much better than the back.   My sweet cousin Nicole was willing to stop and grab a few things and drive Grace up for us to bring home. 
      Arrived at Huntsman around 5:00.   They ordered more blood tests and yet another EKG.   We got to watch some lovely videos about being a fall risk in the hospital (did you know that 11,000 people per year die from complications from falling in the hospital). 
       After a while the on call doctor came to talk to us.   He really thinks that the cause of most of his symptoms is probably the low calcium, which could be because of the new medication that they added at last infusion.  However there are a few other things they need to check on.   There could be problems with his heart, such as pericarditas (inflammation of the lining around the heart).   They also want to rule out a blood clot.   Cancer increases your risk of a blood clot, as does one of his chemo meds.   He is on a blood thinner to prevent them and within "therapeutic range" with his dose, so it's luckily a low risk. 
     So here were are, back at Huntsman settling in for the night.   After so much time in the hospital last year, we were hoping to make it this year without spending a night, but I guess making it almost 7 months isn't too bad.   This time we have a room with a view of the city, but sadly it's a valley filled with smoke and a blood red sun.    He just took a cocktail of meds and is on another infusion of Calcium and Magnesium.
      Our hope is that this is just a short turn in the road, and that it is only a short diversion and we'll be back on the main road again soon.   Hopefully it won't mean any major changes to his chemo meds since they are working in the battle against myeloma. 
      Here's to hoping we will only have to stay one night.