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).