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. 
 

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.

     

     

The Rawr of Fathom

I am going to tell a story. This story is about a man and his truck. Almost 12 years ago, Michelle and I were living in St. George, and just got her a new car because our old one was on it's last leg. I had sold my other truck, named "Master Chief", a couple months before that and we decided we needed another vehicle in the family, so the search began.

After about a dozen or so failed searches and looksees, I found a Dodge Ram in Las Vegas that I wanted to check out and the sales lady at the Mitsubishi Dealership said to come this evening and I would get the best deal on it. (Interesting tidbit, Mitsubishi people don't like Dodge Rams on their lots and are willing to take deals to move the inventory.) And she said she would hold it for me. Queue a quick 2 hours and we pull up on the lot and ask for the sales lady. Turns out, she sold the truck to someone else and left for the day. That was nice of her. Sales guy asked me if I wanted to buy a Mitsubishi as they are literally the same vehicle. I laughed at him and left. (Frustration Level 7/10)

Being planners, I had a couple trucks that I wanted to see so that I had a back up plan. I called the next dealer ship and that truck was sold. Last truck, I called up, and they said they still had it, and that they would hold it for me. I heard that before but told them I am across town and it will take me a bit to get there and that I am already ticked off from this dealership, so be ready. The guy promised it would be there.

I show up at the dealer and there is the truck I wanted to look at. It was a Harley Davidson Special Edition, and it looked amazing. But, when we sat in it, the first thing we noticed was there was no automatic nothing. I mean, it was completely like going back to the 70s. Who knew they still sold vehicles where you have to roll down your window? I figured the buttons were standard! I was wrong. So the sales guy comes out and we talked and I told him we just can't pull the trigger on a vehicle that I do not love.  It looked great! And the wheels were amazing, the rims looked so good! But, just, no. (Frustration Level 11/10) So as we walked out, the sales guy said that he had a black Ram, and I declined stating I would never buy a white or black vehicle. He then pipes up, "What about Silver? We have a Silver Dodge Ram here." I looked at Michelle, who had perked up because she had her Silver Honda Accord. So I said we would look at it but don't expect anything.

As we waited, we saw one of the runners run out to the lot. I stood there with a smirk on my face until I heard her. The sound I heard was a 2005 Silver Dodge Ram with a 5.7 liter custom Hemi starting up and growling. The sound carried across the lot and into my soul. "Oh crap," I turned to Michelle, "We just bought a truck."

I knew without seeing the truck, that I was going to buy it, and after a couple hours of negotiating (I wanted the rims from the Harley truck, but they wouldn't budge, so it cost them $3000 off sticker price.), we returned home and I had Fathom.

I tell this story because anyone who didn't know, I absolutely love this truck. I kept it running the best I could and made sure all the maintenance was done and she has rewarded me with over 60,000 miles of pure bliss. That truck represented my freedom, but because of my fight with Multiple Myeloma, a brain tumor, and breathing issues, I lost that freedom, and Fathom sat untouched, mostly, for almost two years.

Well, this past week, things advanced very quickly, and she was sold to someone I believe will take amazing care of her. It was a family who needed her, and it just seemed right (and I can even go drive her whenever I go to St. George, so that is a bonus!).  We thought about this for a long time and even months ago, we discussed if we should keep her. The thing is, if something were to happen to me, how hard for Michelle would it be to get rid of? I got to drive her a couple weeks ago, and looking back, it was a farewell ride that I spent most the trip with a smile on my face.

Anyways, I am sure most of you think it is silly to be attached to a vehicle like I was to Fathom, but there were a lot of great memories with that truck. When I would take Michelle to work, and pick her up, I would use her growl to let her (and all her employees) know I was there! Michelle and I invented the term 'truck-nic', and spent many thunderstorms in the cab over looking the valley while eating pizza. I would even do Neighborhood Watch with Fathom, until 1 AM, just to see if anyone would complain about the noise. We would use my truck as a landmark to help people find our house. Everyone knew Fathom was mine, and knew that if she was home, so was I. Wasn't the case the past while, but I had no problems with the correlation.

The thing is, I am sad and happy at the same time. And you can believe it, that if I wasn't going through what I am, that I would not have sold her.

 Sigh. Cancer Sucks.

Expiration Date

To preface most of this post, I was told at my diagnosis that, because of the involved kidney failure, I have a three to five year life expectancy.  So most of these thoughts are based on that knowledge and things I have thought about the last few months. Sorry if this is morbid to you.  It is a daily thought to me.  Please take with a grain of salt, as I bring my sense of humor along.




Friends

A couple months ago, due to a random encounter involving a potato ricer, I ended up with a new best friend, Tyler. We say that jokingly, but the man brings me fresh barbecue and smoked ribs. I mean, seriously, the guy is a pit-master. Anyways, getting to know him better and hanging out a bit, things are great. However, he made a comment that I haven't been able to shake, and that was, "I wish I would have come up and said hi sooner, I feel like there was wasted time there."  With so little time granted to me, is it fair to others to friend them? What about friends I haven't seen in a while? Do I keep in touch, reach out?

Stuff

Those who know me the most, know I like to collect things. I have an amazing collection of Star Wars Memorabilia. From a huge collection of Funko Pop Figures to large figurines of Darth Maul and some Storm Troopers. I also have various video game and Super Hero figurines. And I have an unhealthy relationship with the Kansas City Chiefs and probably should stop buying ball caps that tell everyone that I am a fan. With such a short time frame, do I stop buying stuff? Getting rid of it is going to be a pain, and I don't want Michelle stuck with it. Do I gift it away? Who is going to want all these Chiefs hats? I'm such a geeky dork.




Knowledge

One thing I have been really good at is teaching myself new things. My expertise with Adobe Photoshop, Adobe Illustrator, and Adobe InDesign has been all self taught. My computer expertise of hardware, software and all things Internet, self taught. I tell everyone that I bend the Internet to my will, and it is very true. It is scary some things I can do on there. My Facebook and Social media advertising, mainly self taught, though I had a great mentor at a previous job. Do I keep learning? Look at those skills, do you think they will be important in the next life? Everything there involves a computer. Are there computers in the Sky? Because "..I'm gonna go to the place that's the best..". Love that song.. 


New Vehicle

With the new treatment, I am getting stronger everyday. Hoping to be able to drive more frequently soon. I miss my truck, it is more a race car than truck, and she sounds so sweet. I even got to drive her the other day, and for those that do not know, it has been about 18 months of not being able to drive due to a health problem of some sort. And man, do I miss the freedom. But she is getting old and I think I am ready for a fun vehicle. (See the matte black Dodge Challenger) I know our first need is a replacement for my bride, and we are hoping to get something this summer. Needs to be able to make the run to the Mothership (Huntsman Cancer Institute), in the snow, in 12 parsecs.. oh and reliably. But then, do I think about my dream car? How would that work? My loan would have a longer time frame than me!


Final Thoughts

Please know I am not depressed. Some things about fighting cancer can be very depressing. Sitting with chemicals dripping into your chest for 7 hours each week with nothing but hospital to look at, yes, can be blah. I am strong. I am young. I have the bestest bride on the planet. I have great friends and family that keep me laughing and engaged. I have a lot to fight for. I know that I want to start travelling a bit, and hopefully will get some miles in soon. So, I hope that even though the topic is dark, that I was able to keep it a little light.  But do know this. There are a lot of factors that are in play here, and I can beat it. I plan on beating it, at least, that is what I am fighting for. This lion has a lot more fight left in him.

Chasing Happiness

   The past week two weeks have been a nice reprieve.   Chris along with many family, friends and co-workers were so very thoughtful and their simple act of kindness was much appreciated.  Last year for my birthday Chris was still in the hospital with his new trach.   This birthday I was just glad to be spending making some happy memories.   Thank-you to everyone who reached out in any way to wish me a Happy Birthday, it added so much joy to my week.  I would try to least list each of you individually, but I don't want to leave anyone out.   So let's just say I'm very lucky to have many sweet and thoughtful family, friends, employee's and co-workers who touch my life in many ways.  

       Last Sunday, my birthday, I had the opportunity to attend the re-dedication of the Jordan River Temple.   Chris had put on a brave face trying not to damper my birthday, but I knew that he was feeling crummy.   Luckily John came to keep him company while I went to the dedication.  While sitting there waiting for it to start, I had some time to be alone with my thoughts.  I was grateful to be there, but regretted that I hadn't thought to ask someone if I could attend with them.  I was a bit lost in my thoughts when a sweet friend from the ward tapped me on the shoulder and asked if I wanted to come join her and her husband.  It was an answer to an unspoken prayer.  Not only was I not alone, but I even got to sit on a comfortable padded chair instead of a hard metal one.  After the dedication I came home to find Chris sitting outside on the porch.   We enjoyed an hour together sitting together watching the rain and hearing the thunder, we both love a good storm, it was a perfect unplanned moment I will treasure.   Then my parents showed up with dinner and we had a nice evening. 

    Common advice to patients with a difficult illness is to not let your diagnosis run your life.  But that in and of itself is a tough battle.   With many complicated illnesses, it feels as if at each diagnosis they assigned us a pet monsters to be our constant companion.   The gray brain tumor monster which has been our companion for many years has been joined by a a couple additional ones.   With the burgundy myeloma monster being the loudest and most demanding of all.

      Sometimes these monsters consume us.   Other times there are rare moments when they sit somewhat quietly in the back seat.   They are a constant reminder that our life will never be the same.   Whenever we try to think about the future, or make plans, it always speaks up and says "What if?"  "Are you sure you want to do that, what if...."  "Do you really think you should get a new vehicle, what if..."  "Do you really think you could plan a vacation, what if...."  It's a battle to not let these unrelenting questions cripple us and keep us from making decisions or plans. 

       Last week was the start of his 2nd cycle of DRd and took us back up to the main Huntsman.   We found out that he's already responding well to the new treatment.  His specific myeloma currently represents itself with high Lambda light chains.   An important part is also the ratio.  At diagnosis his Lamda Light chains were 323.   In February right before collection was the first time we had ever seen this test result with no flags.  Going off treatment for just a short time and his numbers were already climbing again.  Having everything back within normal range with just one month of DRd is excellent news!   It's just one of the things that they are doing to monitor his disease, but it doesn't take a lot of knowledge to know that having things in normal range on any test is always a good sign.  We are so grateful that DRd is working!

      While the side effects of DRd aren't always pleasant and seem to be very unpredictable, they for now are easier than his previous CyBorD.  The nephropathy in his feet and hands from Bortezomib is slowly getting better which is making it easier for him to walk and bit by bit he's getting stronger.   The other day he was walking on the floor in our new bathroom and for the first time could feel the warmth of the heated floor.   They say it can take up to a year for the feeling to return, and there's no  guarantee that it will return at all or completely, so we are happy to be seeing signs of progress.      

     Saturday we packed up the monsters and threw them in the back seat with the oxygen tank and took a short trip.  It's the first time we've traveled in over a year.  We went for the afternoon up to my Grandpa's cabin (near the Soldier Creek Dam/Strawberry reservoir).  It is a place full of many fond memories from my childhood.  To hear the wind blowing through the aspen tree's, to feel the sun on our face and to see the clouds moving so quickly across the sky was a great distraction from life's troubles.   We learned a bit of history about how the cabin came to be and enjoyed the conversation with my aunts and parents.

     With signs that the DRd is working, we're hoping to continue to settle into and adapt to our "new normal".   Life with the monsters is unpredictable, but when we can we try work in happy memories.   When Dara was in clinical trials, the treatment usually worked for about nine months.   However that was in patients who had already tried many more medications.   There are many people who have had a longer response.   This is what we are hoping for.   Our hope is stay on the current course for many years.   For this reason I likely won't be blogging as frequently because there won't be much to update.   Don't worry, I still plan to write every few weeks when there is something to update.  Chris will hopefully also write as well.