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.  

  

Pedicures and Rainbows

     On Sunday last week we were taking the morning to sleep in and recoup when Chris got a text from Dr Sborov asking if he could call.   A phone call from a doctor in the evenings or on weekend typically isn't a good thing, but in this case it was just a good reminder for us that we have an amazing man looking out for Chris.  He was just reviewing things and wanted to make sure that he was doing the best for all of his patients.  We talked for about a half an hour and he wanted to make sure that if there was anything he could do that he was doing it.  We talked to him about some of our concerns and he asked to make sure that we let him know what happens with an upcoming meeting with our specialist.   With all of the complicating and difficult things Chris has been fighting for the past 4 years we've really struggled to find the right doctors.   When we weren't looking and needed an amazing specialist the most, he landed in our lap and for that we will forever be grateful. 

      Last year for my birthday, my family came and picked me up at the hospital.   We had a nice breakfast and then several of us went and got a pedicure.  It was a great break from the crazy month and I remember commenting that it would be fun to do it every year in May.   It was such a nice surprise when I got a text from my aunt Gail asking if I would be interested in getting together again for another group pedicure.   She took care of making all of the arrangements and this Monday I was able to celebrate the start of my birthday week in the company of my sisters and aunts.   It was so nice to be pampered and escape for the evening, my Aunt Shari even was able to surprise all of us by being up visiting from California.   Pictured: Gail, Roxann, Shari, me, Crystal and Jennifer. 

     Wednesday was the 4th infusion (and last) of his first cycle of DRd and for the first time it was out at the Huntsman in South Jordan.   While the nurses and infusion center at the main Huntsman are familiar, being closer to home is a different kind of comforting.  Next week we'll be back up at the main Huntsman and meeting with Dr Sborov as he begins the 2nd cycle of DRd.  So today we went back for more testing so that we can know how he's responding.   I've heard in a support group that often the numbers don't respond until after the second cycle, but we'll cross our fingers. 

      As we pulled into the hospital for the third time this week, the life flight helicopter was sitting on the pad, something we haven't seen before at our local UofU/Huntsman.   It was a bit sobering and ended up being the theme for the day.  After dropping of and getting labs done at the infusion center we headed to radiology.  Dr Sborov wanted a skeletal survey.   It's basically a whole bunch of xrays from his head to his knee's to see if they can see any lyric lesions.  The waiting room was surprising empty, but before they could get Chris in they told us they just had an emergency patient that needed to be taken care of first.   We gladly waited.  The tech who helped us was amazing.   She was patient and very understanding and did everything she could to make the process easier for Chris.  The last time we did a skeletal survey was back in October in the early days of his diagnosis.   It took all the energy he at the time and wore him out but he pushed hard to make it through.   Today it did wonders for my heart to see how much stronger he is since then.  It still was no walk in the park, but he's stronger today and it gives me hope he will continue to improve. 
   
      As we were going from radiology to the next appointment we stopped for a moment in the lobby and I happened to see a couple, about our age, sitting across from us.   From what I could observe, the husband was breaking some tough news to his wife.   She was struggling not to cry and I could feel the pain she was going through because I've been there so many times myself.   I wanted so badly to go up and give her a hug and a word of encouragement but I had no idea what to say.   They left and walked up the stairs and we went to his next test.   I saw them again as we went to leave, tucked over in a corner talking, the emotion still etched on her face and the struggle not to cry a real battle.   Going to the hospital so frequently, has become such a regular part of our life that it's easy to lose sight of how life changing hospitals can be. 

     Battling cancer is a something that is multi-factorial, with just one of the stressful things being financial.  In general we've been pretty fortunate to have good insurance, and are surviving that aspect of the battle about as to be expected.   However with insurance there's still often a lot of hoops to jump through.   This week we ended up with about $5500 in bills for various procedures and medical equipment.   They are things that should have been covered but were processed incorrectly.   It's something that happens frequently and is very frustrating.  We contacted IHC, Huntsman and our insurance to try and get them worked out correctly.  It's something that happened frequently with his brain tumor and from that I learned all of the insurance lingo and to know how things worked.   Many I'm sure get bills in the mail and pay them without question, but to me I'm not willing to just take it in the pocketbook without a fight.   One of the bills that was sent incorrectly gave us a sneak peak of the cost for his Daratumamab.  We knew it was expensive, but the $50,000+ price tag... per infusion... was more than I expected.   That's also just one med.   The Revlimid has a price of $14,000 per month, our portion is large but reasonable.   Luckily the last drug, the little "d" in DRd is comes with smaller price tag, which we split about equally with insurance.

       This week also luckily happens to be the week Chris has a break from Revlimid (his daily
chemo).   Feeling crummy is pretty much just part of life with cancer, but we're hoping this week he'll feel just a little bit less crappy.  With my birthday this weekend we've taken each evening to go out and get something yummy to eat. Getting out isn't easy, but Chris wants for me to be happy and we both want to have some happy memories mixed in with all the challenging ones.   Tonight he wasn't feeling well and was worried about being away from home, but we were able to make the trip to Bountiful where we were able to have dessert with my parents at a place called Pace's.   It's a favorite place from my childhood where you can get an ice cream treat called a rainbow, a fruity slush with soft serve ice cream.   Just like the weather, life is unpredictable and you never know when you'll see a rainbow.   So if you live in Utah, and are going through a stormy part of life and need a rainbow... now you know where to go to find one. 

   

Longest Ever!

      A year ago today on Facebook I posted this picture and said "Longest Day Ever".   At the end of April we finally found the reason for his trouble breathing, which he had been struggling with since the fall... tracheal stenosis (narrowing in his airway).   The entire next week we tried to get in for a CT.   We struggled to get an appointment with a specialist, the earliest available being months out.   After a long weekend with little sleep we knew that we simply couldn't wait any longer and on Monday we decided to head to the main UofU ER in hopes that they would see the importance of the situation and consult with the highly recommended specialist there, Dr Smith.   

     The nurse in the ER (named Michelle) was amazing, she was very concerned and a great advocate.  They scheduled him for surgery the next day and then moved us up to a room where we felt tucked away and forgotten.   Another long night with with only 30-60 seconds of sleep at a time, his oxygen would drop into the 70's (normal is 95-100) and set off the alarms and no one would ever come.   We were both exhausted by the time morning came.  They weren't sure when he would have surgery so he wasn't allowed to eat or drink anything all day.   They finally took him back for surgery about 9:30 PM and I sat in an empty waiting room.   The surgery was supposed to take less than 2 hours, but finally in the early hours of the morning, around 1:00 Dr Smith came and told me he was done.  It was a difficult surgery unlike anything he'd seen, he put my mind at ease and said we'd done the right thing by bringing him to the ER.   Shortly after a nurse came and took me to see Chris in recovery.  It was great to see him, but shortly after I arrived it was apparent that he was struggling.   He was on Bi-Pap and the look in his eye was pleading for me to help him.   I felt so helpless not knowing how I could possibly help, so I held his hand and told him things would be OK.  The nurses were doing what they could, but he was in respiratory distress.  He needed more help.   It wasn't long before they rushed him down to the surgical ICU and I was sent out to the waiting room.   They said they would come get me in about 45 minutes.   

      The longest day ever became the longest night ever.   Sitting in a new waiting room I waited anxiously wondering how he was doing, trying to sleep a little with only minimal success.   Someone had come out and said he was stabilized and so I tried to wait patiently for them to tell me it was OK to come in.  Finally at 5:00 I decided to try and figure out how to get back to the ICU.   His airway was so small (even after the surgery to open it) that they had to intubate him with a pediatric tube.  It was so short that they were very concerned it would come out so they had it carefully tied in and his hands restrained.   The backup in case it did was taped to the shelf and every shift change the nurses would make sure they knew where it was at.  He was also still sedated.   As scary as it was to see him hooked up to so many things, he was so peaceful that it was a huge comfort compared to seeing him in recovery.  

       The longest day ever turned into the longest week ever as we stayed in the ICU.   On Thursday they tried to remove the tube and allow him to breathe on his own, he did good for awhile but then it quickly became apparent it wasn't going to work.  This time I was tucked away in the corner and watched the team as they had to re-intubate him.   It was terrifying and comforting to be in the room as they did so.   So many people making sure he was OK.   Staying tied down, hooked to a ventilator wasn't a long term solution so on Sunday they put in his trach.   It was about this time that I started this blog.   Another week in the ICU and then to a regular room and eventually we were allowed to go home.   Life at home with a trach was a tough adjustment.  We weren't given the training that they promised and care for his new trach fell squarely on my shoulders.   It was terrifying.   At his follow up appointment at the end of the month his airway was still about 70-80% blocked.     

     The longest month ever turned into a long summer as we adapted to his trach and new challenges and trials emerged.  We learned and tried to overcome, but things got tougher and harder.   Now, here exactly a year later from the "longest day ever."  We are sitting at Huntsman with his 3rd infusion of his new DRd medications.   Hospitals, blood tests, medications, side effects... it's something we deal on a very regular basis.  Our lives have changed and it's hard not to long for the life before, the life we had hoped to have or to be frightened of what lies ahead.   Many people in the support groups for myeloma talk about how hard they remember the first year being.   We've still got about 5 months before we can put the first year of cancer behind us, but at least we have a different 1 year milestone to celebrate.   We are so very grateful to those who have come to our aid and support during this difficult year.  

    Although life is tough and often overwhelming, it's something I'll gladly do as long as it means I keep my sweetheart by my side.   Sitting beside him while he gets chemo, or helping him walk carefully to the car is the place I most want to be.   Our love grows each day as does my admiration for him.   He's so sweet, so tender, so loving, so thoughtful.   He's going through such difficult obstacles and still always is concerned about me.  He is my hero.  I deeply hope that he'll beat the odds and that we'll have many, many more years together.   This isn't a battle we chose, but we'll fight it together.  
    The lyrics to a Mariah Carey song come to mind....

And then a hero comes along

With the strength to carry on

And you cast your fears aside

And you know you can survive

DRD

 

      Chris posted this picture on Facebook last week and I felt like it was just what we needed for the blog.  Life with myeloma is hard and painful things but also many that are simply unpleasant.  Compared to everything so far, last week was just a typical week with many unpleasant things and some uncertainties of how things would turn out.

      Wednesday last week was a long day of his new treatment. He wore his cookie monster pants, I packed his favorite cookies and some of his favorite milk and together we got up and left our house about 6 AM.   It was a long day and we didn't get back until about 7 PM.  All things considered the infusion went about like we expected.  There was a chance it could turn into an overnight stay, so we came prepared but it ended up not being needed.

      After a whole bunch of "pre-meds" to help make things go smoother, they got the Daratumamab infusion started.  They put the IV meds in a 1000 ML bag and started the infusion at rate of 50 ML per hour checking his vitals and increasing it each hour if he was doing OK.   The first side effect he felt was a spike in his temp, nothing too crazy, and a cool rag worked to help him cool down.   Shortly after they bumped it to 100 ML per hour he got a full body rash.   It started in a few areas and quickly spread.  They stopped the infusion and gave him some more IV Bendryl.  Once the rash went away they started the treatment back up at 50 ML per hour.   The Bendryl put him to sleep and he was able to get in a good nap.   They increased it each hour by 50 ML.  The monitored his vital signs on a regular basis and there were no more reactions for the rest.  Once he was up to the max of 200 ML per hour things went much faster.

     Our nurse Robin was awesome!   She was his nurse the first day of collection and always makes us both feel welcome, she even remembers and calls me by my name.   There are at least two infusion rooms that I'm aware of at the main Huntsman and we thought we were going to be in the main one however it was in the BMT infusion room.   Doing the initial infusion's of Daratumamb is something apparently fairly new to the BMT infusion.   Robin was a bit concerned and wondered why our infusion wasn't being done inpatient but everything went fairly smoothly and although we thought we might end up being transferred upstairs he was able to finish it in time to avoid being put in a room.

     Chris's family from Washington, Montana and Texas let us know throughout the day that they were thinking of us by sending us pictures wearing their Team Chris shirts.

      Once we got home Chris took his new chemo, Revlimid.   It's a pill that he takes at home every day for 3 weeks, and then gets a week off to help his body recover.   Having chemo around the house is a strange feeling.  He's got to be very careful with it, it's not something I'm even supposed to touch.  It also has a side effect of blood clots, so he also started a blood thinner.   We thought they were going to have to be shots, but were relieved that they decided to do a pill instead that was much cheaper and easier to take.  As well we now have another team watching over him, the thrombosis team.   Until they figure out his dosing needs, they will be doing regular PT-INR tests every couple days to measure how thick/thin his blood is.

     All of the new medications have come with a lot of fatigue.   He's still pretty worn out and battling some of the effects from collection and it would have been nice to have the week off like planned, but it just wasn't in the cards.   Unfortunately it also has really made him have insomnia.   He has had hard time sleeping for while and is often up in the wee hours of the morning.   Being exhausted and tired at the same time are two things that really don't go well together.   Saturday I convinced him to go back to bed and he slept almost all day.   He's felt a bit better since then, but has been again dealing with an itchy rash from the medication (a common side effect).  We're both grateful that when he is awake he can often work to help keep his mind off things.  There's no way he could work a typical 9-5 job, so we are glad he's able to work some here and there. 

      Today we are back up at Huntsman for another infusion.   Our nurse this week is Amber, another one of our favorites.  Instead of a 1000 ML bag, they've mixed the Daratumamab into a 500 ML bag.  Starting again at 50 ML and working our way up, so far with no need to pause.   He's been able to rest some this morning and the infusion room is oddly quiet.   This morning as we walked in, Chris was resting in the lobby from walking in from the car.   Dr Sborov happened to be walking by and stopped and came over to check and make sure he was OK.   It was just something simple, but made me appreciate even more that we ended up with an amazing doctor at a time when we needed it the most.  We're both so grateful and touched by his genuine concern.

   

Ferrari's

    Today as I walked to church the sun was shining, a gentle breeze was blowing and the smell of blossoms in the air was sweet.   It was a great balm for my soul.   Spring is increasingly becoming my favorite season because of all of the reminders that life can be beautiful even after a difficult, cold harsh winter.  I also couldn't help but notice that while some items are in full bloom, and others have already begun to sprout leaves, others were barren still hibernating from winter.   It's was about six months ago that we found out about the multiple myeloma.   Spring hasn't quite yet come to our journey, but the warmth of the sun and the gentle breeze I'm hopefully it's very close on the horizon.

     We met with Dr Sborov again Friday to figure out what the next step is.  Chris was originally supposed to have a break from chemo until May but just prior to collection we found that his Lamda Light Chain numbers were high.   In October his Lambda light chains were 323 (Normal is .57-2.63).   Starting chemo they dropped fairly quickly and were down to 4.67 by December and dropped regularly each subsequent test.   They were normal for the first time in February at 2.03.   Just prior to collection they were 12.6, and when tested again this week they are at 18.4.  So all the plans to start treatment were moved up.   Dr Sborov would like to start again as soon as possible, he would have started this week if he could have.

      Trying to describe the status of myeloma is tricky.   There's approximately 724 trillion blood cells in the average human body, so there's a lot of places for myeloma cells to hide.  There's a lot of debate about using the term "remission"" for myeloma.   Most myeloma patients, even those who do transplant, are on maintenance chemo to keep the myeloma at bay.  Compared to most other cancer patients when in "remission" are not currently being treated.  One term is "Complete Response" which I interpret to mean that the drugs are doing their job.   I've learned that when they decided to do collection Chris was in SCR (stringent complete response) meaning that according to his blood tests and bone marrow biopsies things were in normal range.   The meyloma was behaving so they used the opportunity to collect.  Because his numbers are climbing he has "relapsed".   Since he hasn't been doing chemo it's to be expected but they had hoped it wouldn't come back quick so quick.   

     When Chris was originally diagnosed, because of his kidney failure their options for treatment were limited.   Now that his kidney's have improved he's eligible for the "Ferrari" of treatments.  While Dr Sborov meant it in terms of the quality, it's hard not to be staggered at the cost two of his medications are each both likely 6 digit figures in terms of cost per year. 

     Years ago I remember standing in line picking up a prescription in St. George.   The person in front of me was picking up one that was about $250 and trying to figure out how to pay for it.   I was shocked and wondered what the costly medication could possibly be.  I remember then picking up mine and being grateful that it was only about $10. 

     Over the years we've been shocked at the prices of medication.   $600, $900, $1000, $1100, $3000...Several times it was common to hear the timid pharmacists carefully ask "You know this is expensive right?".  We are very fortunate to have insurance that covers a large portion of the cost.  Especially since his chemo usually has a 5 digit price each treatment.   However one bit of knowledge that I can highly recommend to anyone is that if you get a prescription that's very expensive is to see if the company has an assistance program that can help bring your co-pay costs down to a reasonable amount.   Not sure what would be covered by insurance and what we would have to pay, I looked into this as soon as I got home to get signed up for anything available.

     Next week he'll have his first treatment of DRd

daratumumab (Darzalex®)

revlimid (lenalidomide)

dexamethasone (Decadron®)

     His previous treatment was all done once a week on the same day (an infusion, a shot and pills).  DRd will be different.   It is a weekly infusion (Daratummab), Revlimid (daily pills) and dex (weekly pills).

    Daratumamab is a monoclonal antibody.  It targets the CD38 protein that is highly expressed on myeloma cells and attacks and kills them or allows the body to kill them.  The way I picture it is like a military operation and we are sending in reinforcements.   The body doesn't know that's what they are, so for the first couple infusions most people experience a reaction and in varying severity.   When a reaction happens, they will stop the infusion, treat the reaction, and then when safe to do so start the infusion again at a slower rate.   Because of this the infusion can take a long time, usually about 10 hours.  After the first couple infusions, the body seems to realize that we're sending reinforcements and instead of causing a reaction they become allies and fight the myeloma.    He will do these infusions weekly for a while, eventually going to bi-weekly and then eventually monthly.

    Revlimid is an oral medication that will likely be taken for 21 days followed by a week off.   Revlimid is an IMiD  (Immunomodulatory drugs).   This Immunotherapy treats the disease by inducing, enhancing, or suppressing an immune response.  It can cause low blood counts, fatigue and blood clots.   They will monitor his blood counts carefully and because of a family history of blood clots he will also be on a blood thinner.  It's a powerful drug which required several pages of consent, and regular phone calls with the company to make sure he's taking it correctly.   

     Dexamethasone is a corticosteroid that is very common and included in most myeloma treatments.  It is used at almost all stages and sometimes even alone when nothing else works.     It can help with inflammation, help decrease nausea, and at high enough doses can even kill myeloma.   It can also help make other myeloma drugs work better.  

    Anyways, enough of the technical and informative.   The next couple weeks are likely to be tough, but we've been through many tough weeks and survived.   This new treatment will hopefully provide relief from some of the difficult side effects and improve the quality of life for both of us.   The first treatment CyBorD served it's purpose and was able to get the myeloma under control and save his kidney's.   That is no small achievement!   

       After the first couple weeks things will gradually get better and getting down to only one infusion a month instead of one a week will be amazing.   The past six months we've had little time or energy to do anything else.  It will take time, and these new medications will surely have it's own side effects to deal with but I'm hopeful there's a chance to to reclaim a part of ourselves and have time to make some happy memories.  Treatment, in one form or another, are likely a permanent part of our life but with a few windows of opportunity opening it hopefully won't be all encompassing.