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.