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. 
 

A Break in the Clouds

     We've recently been able to make some improvements to chemo.    Because of the support groups we are in we heard about a faster infusion for Daratumumab .   Chris asked about it, to anyone who could possibly make it happen.   Dr Sborov was on board but hadn't been able to change the protocol.   We asked his nurses at both the main Huntsman and also at the infusion center in Daybreak.   No one sounded optimistic that it would happen anytime soon, I hoped that it would be possible by the end of the year.   So one day when we showed up in Daybreak for chemo we were surprised to have them say they were going to try a "rapid" version as a test.   After waiting for labs and the chemo to be made, the actual infusion took about 2 hours.    It took more asking and checking, but now we are on the 90 minute protocol at both locations.   Chemo day is still a long day, filled with lots of waiting, but being able to cut down the actual IV infusion from about 4 hours to just 1 1/2 is a very nice change.

      As well as the triumph of a shorter infusion, he's reached the part in his Daratumumab treatment that he now only has infusion every other week.   Recently, for the first time since the end of August 2017, we made it a whole week without having to go to the doctors office or the hospital.  Given that things before last August weren't smooth sailing either, it has been a strange feeling.   It's a good change, and we are very excited, but it's become such a regular part of our life that the absence of it is felt.   Wednesday as we prepared to head to chemo, it was a bit harder to come back.   With his Daratumumab infusion they also added another medication to help strengthen his bones.   Myeloma affects the bones and cause them to be very weak, but they avoided adding this medication until now because of damage to his kidney's.   His white blood cells and hemoglobin numbers were lower than normal, if they continue, they will likely add other medications to help them.

      With the stars aligned (or medications in this case), Chris had a off week from Daratumumab and his off week from his daily chemo.   We took advantage of it and I used a couple precious vacations days off of work to have a long weekend.   On Friday last week we drove up to Logan and Bear Lake.   Chris was still exhausted and slept part of the way, but it was good to have a break.   The weather was beautiful and the scenery was stunning.   Chris snagged this picture with his phone, and with the sun shining just right it naturally enhanced the color.  We couldn't make a trip to Bear Lake without trying a world famous raspberry shake, so before we drove back home for the evening I stopped and grabbed one to enjoy.   One of our favorite things about a car trip is listening to a book on CD.   I picked the book Mustaches for Maddie.   I was a bit worried about a book about a brain tumor hitting too close to home, but decided to take a chance.   It had both us laughing at times, but a few times I was in tears as they perfectly described some of the feelings and situations of a challenging medical condition.   We only got about half way through, and hope to plan another road trip to finish the story. 

     With the weekend off, we were also able to get some other things accomplished.   One thing that we have been contemplating for a couple years is the purchase of a new vehicle.   The uncertainty of what our future holds made the decision more stressful than normal and we've been searching for just the right one.   We finally found it, and made the purchase on Monday.   Meet Grace, a 2015 CR-V EX-L with just about 20,000 miles.   Higher up off the ground, it's much more comfortable and easier for Chris to get in and out of.  The dual climate control will make it so that he's a good temp and I'm not an ice cube.  The heated leather seats and AWD will be nice improvement in the winter.  Plus like our previous car, it has a sunroof, which his mom points out is great for star gazing.   Driving up to the main Huntsman for chemo, we were both happy to have finally made a decision and being able to enjoy the comfort and fun of a new vehicle.  Hopefully again in the future when the medications are aligned again, we can take another fun road trip, this time in Grace. 

     In my last blog, I mentioned the fire near our family cabin.    The winds blew and to date about 57,000 acres burned.   The fire fighters worked diligently.   For many it was devastating and they lost everything.   For our family, we had a miracle.  A perfectly timed storm made a difference in this fire.  The fire got to within about 1/2 mile of Pine Hollow (where the cabin is located) but they were able to hold it back.  I'm so glad that my recent visit wasn't my last.   This progression map to me is amazing to see how something started small and grew quickly wild and out of control.   But with the right resources is now getting close to being contained. 

     Many months ago, a few days before we found out about the myeloma, I wrote a blog called "Lionhearted".   Today I found this quote that fits Chris and his battle with cancer perfectly.   He has not cowered in fear or hidden from the difficult.   He has faced the challenge head on.   Every day he pushes through and is working as hard as he can to rise above.  His current treatment is working and his numbers "contained".   The winds have calmed and the torrential downpour slowed.   His "off weeks" appear to us as breaks in the clouds on the horizon.   While we hope and pray for a miracle that myeloma will become curable sometime in his lifetime, stormy weather for us is life.   You know that amazing smell and feel after a summer storm?  That is what his week off from treatment felt like to us.   As long as the winds don't shift, there's another one just on the horizon. 
 

   

   

   




         

The Long and Short Of It

My name is Christopher James Carlsson and I have Multiple Myeloma, which has no known cure. Please do not confuse this with a more common cancer called Melanoma, which is cancer of the skin.  Multiple Myeloma is a rare cancer of the blood plasma that effects the bones via lesions that grow on and in the bone. If left undetected or untreated, these can cause the bones to become like Swiss cheese or brittle like dried twigs. I know of a Multiple Myeloma patient that slammed his car door and broke his back. Another who, randomly shook his father-in-law's hand, as he had done a million times before and broke his arm in six places. These types of injuries are common and it is what I am trying to prevent as well as not succumbing to it.

I feel I need to start prefacing my posts with that information for greater understanding of what I have.

One thing that has come up in discussion with my bride and I, is what do we say when people ask how I am doing. Of course, everyone will say to tell them the truth. But the thing is, the truth is not pretty. And it depends on the circumstances. Did the person ask in haste? Say, at the end of church and they have a kid in each hand and a foot out the door? The explanation takes a little while, and they pretty much have left the conversation at that point. Or maybe you see them at work, knowing they are probably not supposed to stand around, but they ask to be polite. Or my favorite, at a stop light, rolling down their window and yelling across the lane. Literally, there is not enough time to explain how I am doing.

So the quick answers for everyone are these. 'We are hanging in there.' 'He is still fighting the fight.' 'We are doing the best we can.' 'We have each other, and that makes us happy.' 'Doing okay.' Because, those are ALL the truth. But hopefully, I can shed some light on where we are at exactly. I am not as good as Michelle at describing things, so I will give you my interpretation of my care and hopefully, that works!

So, for 21 days straight, I take an oral medication of a very strong chemotherapy drug. It is so potent, that the orange plastic medication container that it comes in, is also in a plastic bag and has a warning that only the patient should touch it. I have a monthly phone call with the manufacturer of the medication to answer questions about the potency of the drug, and, I also have to have an over-the-phone interview with the Huntsman Pharmacist about the drug. After 21 days, I have a 7 day reprieve of the drug to give my body a chance to recover a bit. Then it is right back on it.

Along with that, I have another chemotherapy drug that has to be infused. Infusion is done at the Huntsman, and I have a port line in my chest that they can hook an IV up to quickly, draw blood labs, and then use the same line to drip the drug in. This is the drug that I convinced them to use the 90 minute version. However, it still takes forever, because they draw labs, wait for the results, and then create the chemotherapy. This can take anywhere from 2 to 4 hours, on top of infusion. So yes, when it was a 4 hour infusion, it could take 6 to 8 hours of the day. Now if I could only get them to speed up the blood work! Anyways, this chemotherapy drug works like a recon unit in the military. It goes
in and attaches itself to the cancer cells and works with the daily pill chemotherapy to take them out. Really futuristic stuff.

The third drug I take, twice a week, is a steroid. According to some, this is the most important drug I take in the fight against Multiple Myeloma. It is also the one that takes it's toll on me almost immediately after taking it.

The effects of all three of these together can be devastating to the human body. Some days, I cannot keep anything down. Others, I have so much pain in my feet that I do not want to get out of bed. I do, but it feels like walking on thumbtacks or knives.  Some days I have headaches so bad, that I cry when light shines through. Some days I have a fever so hot that I am hot to the touch. Some days I am dizzy and have almost fallen over or almost put my hand through glass. Other days I just feel crummy, and have no description just, blah. I have constant pain and my go to drug of choice, Ibuprofen, must be taken sparingly, as it goes through the kidneys and then the whole "Opioid Epidemic" has doctors and pharmacists on edge about prescribing them, so I do not even ask. Even other days, I am so tired, I cannot sleep. Just last week I laid in bed until 8 AM, before I fell asleep.

As I said before, Multiple Myeloma has no cure. I take over a dozen other medications to help with side effects and other properties of the chemotherapy. It is not pretty. It is painful and I will be fighting for the rest of my life. But, by fighting, I hope to prolong my life. So just remember, if you ask how I am doing, there is the long answer and the short answer. Neither one is that I am doing good. I will however, be in good spirits. I will do my best to make you laugh. And if you talk a mean video game, I will be right there with you. I still love getting visits, and I love talking sports and eating good food. Thank you for all the friends and family that have supported Michelle and I, you are all amazing, and I truly cannot wait to see what the future holds, even if it means staying awake at all hours in the morning.  Maybe I will text one of you? ;)

June

     It's hard to believe that it's been over a month since I last blogged.   June went by so quickly!     There were fewer appointments and tests than we've become accustomed to and we've been able to spend time doing other things.  While summer doesn't hold quite the same magic it did as a child, there's still something wonderful about the changing of the seasons. 

    I've decided that this summer has a theme.  "Live More, Worry Less".   Last summer was incredibly difficult, and while the change of seasons brought more trials, we've come a long way and finally reached a point where things are improving and a bit more bearable.   "Live More, Worry Less" won't be easy, but it's a good and worthy goal.


      With life being a little easier, I've been able to catch up on a few things.   One thing that's been on my to do list was to somehow make our house easier to find.  While we love where we live, the houses and streets are hard to navigate and the numbering confusing.   Worried about an ambulance not being able to find our house in the event of a future emergency, I cut in reflective vinyl our address to put on our back gate.   It's just a simple thing that didn't take me all that long, but it puts my mind at ease to have it in place.

     We've also tried to make time for some fun memories.   It's still hard to plan anything too much in advance, but we both want to make the most of our time and not let cancer consume everything.   While searching for something that Chris felt he could do, I came across the idea of going for a train ride in Heber City.   I proposed the idea to him and he was excited about the idea.    When I found a Star Wars themed ride in August he almost immediately bought tickets.   Success!   Wanting to give it a bit of a test run to make sure that it would work, we found out that to celebrate summer they had a 45 minute ride.   He wasn't feeling well when the day arrived, but the fresh evening air and some helpful employee's helped him conquer the steps into the train.

     Our trip on the railroad was one of our biggest excursions, but we've also tried to make memories by getting out of the house for things other than chemo and Dr.'s appointments.  One of our favorite simple summer activities is to go for frosted lemonades at Chick-Fil-A.    Chris also found a food truck that he really enjoys, its called "On the Hook"  and serves amazing fish and chips.   Like the decal on the gate, as something to put our mind at ease, after eating his delicious meal, we then drove through the cemetery looking at the available plots and discussing which we liked.   Trying to put a difficult decision behind us in hopes that we won't need it for many years to come.   When communicating recently with co-worker, whose husband was diagnosed with cancer a year ago and given a year to live, I said that "It makes trying to make decisions difficult, but adds lots of difficult decisions into the mix".    This is a perfect example of a difficult decision.... cancer sucks!

      While there are things that we love about summer, one thing that we don't love is the hot weather that it always brings.   The longer days are nice, but the blistering hot is miserable.  It's always a treat when there is a cool breeze blowing and we can venture out on the front porch for some cool fresh air.  It's especially a treat when the cooler days occur on "dex" days.   Dexamethasone (or Decadron) is a steroid and the little d in his DRd treatment.    He takes it on infusion day and the day after.   It is the medication that gives him insomnia and keeps him up until 4 AM even though he's exhausted.   It also makes him super hot.   For many in our support groups it can also make people mean, I'm so fortunate that he's still his sweet self.   He always make sure to tell me that he appreciates all that I do for him, and apologizes for all we are going through.   He's a sweet man all the way to the core, and I love him!

      This past weekend I was able to spend time at my Grandpa's cabin celebrating his 85th birthday.    Chris feels crummy most of the time, but weekends are usually the hardest.  I debated all week if I should go.   I also struggled to decide about spending the night.    We have only spent a handful of nights apart in our entire marriage and being away from him is hard.   In the end I decided to go and it was a great blessing to get away.   Life as a caregiver is tough and often unrelenting.   So many things to worry about and responsibilities to juggle, my mind is often overloaded and bogged down with details.   To be able to step away and enjoy some peace and quiet was good for me and allowed me to recharge my batteries.    Also good for me was to spend time laughing with my aunts, uncles and cousins.   It was hard to be away, but I was glad I decided to go. 

      Right when we were leaving, someone looked up and noticed smoke wafting above the treeline.   Utah's dry winter has made for a very dangerous fire season and the smoke looked like it was just over the ridge.   As we drove away, the magnitude of the fire came into view and it looked like it was growing rapidly.  My heart was saddened as I wondered if this trip to the cabin was the last.   When my Grandpa had been talking about how he built the cabin, he mentioned that it was one of the most fire resistant cabins, built with cinder blocks and "Hilton" bricks.   Fire resistant is not the same as fire proof, and fires can be ruthless.   The treasured cabin, a place of such fond memories, could be taken away in an instant.   The fire is known as the Dollar Ridge Fire and grew from 200 acres to 6,600 in a few hours and now to 30,000 in just a day.   It's considered to be the most complex wildfire currently growing in Utah.   So far, the winds are blowing the fire the other way and the cabin appears to be safe.   But the fire is impacting many people, structures have been lost and many people have been evacuated. 

      Today while back at work the fire was on my mind.   I realized that for us Chris's cancer is much like a wildfire.   When it comes to a fire, several miles away is much too close.  Cancer is the same way, having anyone you know battle cancer is too close to home.   But having it arrive on your doorstep, it gives you no choice but to face it head on.   As time has progressed and we gained a bit of distance we've realized the enormity of our situation.  Resources and a great team of professionals are helping us with the battle.   His battle for now is "well contained".   The battle plan is working and we are gaining ground, but the danger is still eminent.   The winds can shift at any given moment and we must give our entire effort to fighting.   I once read that while they will often say that a fire is 100% contained, they don't consider a wildfire completely out until winter brings snow because there's always a potential for a hot spot to flare back up. Multiple Myeloma treatment has come a long way in the past several years and treatments are becoming more effective and longer lasting, but there is no known cure.   Being contained does not mean that all is well and we can step away, it just means that what we are doing is working and we've got to keep fighting.