One Day at a Time

     In a surprise turn of events, Chris was released this week from Huntsman and we are finally home!    Almost two months in a hospital is a LONG time and we are so grateful to be home.   In the few short days that we had returned from Encompass, Chris had been making progress with therapy, but the timing of his release was sooner than we expected.   Simply getting into the car at Huntsman and then out again and into the house took lots of planning and patience.   After being stuck in a hospital bed for so long walking, standing and stepping take a lot of effort and energy.   Each day seems a little bit better than the previous and we are getting better at knowing what he needs and his limits.   I'm sure it's frustrating to be so reliant on others and I know he is eager to regain his independence.   But it is going to take time, patience and hard work and we are focusing at the end of the day on acknowledging the progress he made that day.  Recovering from the physical trauma of the past two months will take time, and we hope and pray that his myeloma will cooperate with what he needs.   

       We could not have made it through this week without his nephew, Isaac, who was willing and able to come to stay with us.   He has been an amazing help.  His strength and patience have been invaluable.   He's willing to do anything we need and the peace of mind knowing that he's here is a huge relief to both of us.   Thank-you Isaac!  

     Returning to the comforts of home have been wonderful and brought additional gratitude for the additions and changes over the past five years that have made returning home possible.   The lift recliner my Grandpa purchased for him has been a huge blessing and useful tool, allowing him to reserve his strength for other places it's needed.  The custom shower his brother Fred built has allowed him the luxury of a shower, while still being safe.   Our neighbor's the Binn's have spoiled us with delicious treats like hot bread, cinnamon rolls and numerous other treats.   Also super grateful for my aunts also arrived with short notice and helped clean our house.   Being home for me has blessings as well.   I'm grateful to not have to wear a mask 90% of the day and I've realized that I've desperately missed the softness of carpet.   We are sleeping with him in his recliner and me on our couch.   It's much more comfortable than my sleeping accommodations for the past two months.  As well,  unlike the hospital we are able to place more of an emphasis of the healing of a good night's sleep over the need to get vitals at 4 AM.   

     While it  would be nice to be able to stay home and recover,  his chemo and kidneys make it necessary to be followed carefully.   We are supposed to go almost every other day to the hospital for labs and treatment.   The new team of doctors for the week thought it would be better to leave his dialysis line "just in case", but there are plans to remove his dialysis port and his PICC and place a port in about two weeks.   We aren't sure what the next step will be after that, so for now we are mostly just living day by day and will face that door when it comes.   

      However, there is one good thing ahead in the future.   A good friend has also given us a great opportunity and offer of assistance.   On Monday November 14th, the Quick Quack Car Wash in South Jordan (on 114th South, just north of the Distric) will be having a grand opening and will be doing a fundraiser in our honor.   It's a great opportunity to get a great car wash and help us in the process.    Chris will soon be creating a Facebook event with more details and we would appreciate all the help we can in spreading the word.    

 

Resilience & Redemption

     After almost two weeks at Encompass rehab hospital,  we returned to Huntsman on Thursday for more chemo   But before I get into what happened this week, I must back up a bit.   Before we left Huntsman he had stabilized medically but being stuck in ICU had weakened his body.   PT and OT we knew were critical in his goal to get home.   A few days before we left, one of our favorite PT's  (Michael) was back after being off for a few days.   He has been amazing to work with and always made Chris feel safe.   He was gaining strength and we were so happy that Chris was doing great at moving from the bed to a recliner on his own two feet, but then things went south.  He was inches away from being where he needed when his legs gave out.   Despite our best effort to prevent it, Chris slid to the floor.    It was heart breaking for all of us, Michael included.   Gravity is the nemesis that brought us here, and falling again was so disheartening.    

      The next morning I ran into Michael in the hall.   He said he had been up all night thinking about what had happened and how to best help Chris.   He had never had a patient end up on the floor before.   I assured him that Chris was doing OK and still was looking forward to working with him that day.   That afternoon Chris was able to stand three times and it helped rebuilt his confidence, but didn't have the confidence to walk.   Michael was going to be on vacation for a while, so we weren't sure if we would see him again.    We thanked him for all that he did to help Chris and for being his champion.   Michael had some amazing parting words to share.   He said how much he admired Chris for his resilience.   

      Michael worked with him in the ICU and knew had seen Chris in the worse of times.   He was amazed at how Chris was always willing to give his best effort even on the worst days.   It's not a trait he see's very often here at Huntsman, and he admired Chris because of it.   He said he would always jump at the chance to work with him.   

      Back to this week, he made good progress while at Encompass.   There were some amazing PT's, OT's, Dr's and nurses there as well.  We both liked a schedule that was a bit more structured.    He did a lot of different exercises and strengthened different muscles.   The last day was a bit discouraging as we hoped he would be walking that day, but unfortunately things just didn't work out for that to happen.   We however were super grateful to get the extra week of extra therapy and that his myeloma cooperated in allowing us to do so.  As well, his kidney's were also doing well that they skipped dialysis on Wednesday.   

     We arrived back to Huntsman on Thursday afternoon to start cycle two.   I don't think I mentioned what they did last time, it was called modified CVAD + Carlfizomib. (Cyclophosphamide, Adriamycin/Doxorubicin, and Dex + Carlfizomib).   I couldn't help but reflect just how far we had come in the past four weeks and the miracle and gratitude that he is still here.    It really is that, a miracle.  It also was the day after his 5 year cancer diagnosis.  We didn't know if we would make it this far, and we are optimistic that we can continue this progress.   I'm trying very hard to just enjoy the present and not worry about the future.   It was a day filled with a a lot of emotions, but among them was a profound sense of gratitude.   

      We weren't in the room for very long when Jane from OT stopped by.   We last saw her in the ICU before she left for a few weeks for her wedding.  She was so excited to see us, and us her.   I also ran into Pastor John, who recognized me and asked how Chris was doing.   As well, Michael claimed the chance to work with Chris as soon as he saw he was coming back.   He stopped in on Friday morning.   It did wonders for all three of us when Chris felt the confidence to walk again!   For him to be able to take those first steps again with Michael was so redeeming!     Dr Sborov also stopped in and was glad to see Chris doing well, although he said that Chris really needs to quit putting him in a position where he has to save his life.  We agree!     

     The chemo and supportive meds have been a constant for the past four days, but it's also been wonderful to see him continue to progress as the weekend went on.  The kidney doctors are happy with how things are going and he hasn't needed dialysis.  In fact, they are scheduling his dialysis port to be removed tomorrow!   I was hopeful that he would be done with dialysis before Thanksgiving, but before Halloween had never crossed my mind as a possibility, that's amazing!  Coming from a time when he had so many lines it was hard to count, we are finally at the point where he is down to just one!   

       

      

Heaven and Hell

      After many, many long days we finally were released from Huntsman to an impatient rehab hospital in Sandy last Saturday night.   Chris got to breath in fresh autumn air and see a glimpse of the sunset before they loaded him in the ambulance for transport.   Compared to the crazy high 100+ days that we were experiencing the week we were admitted, it was a nice change.   

        The original plan was to return to Huntsman this past Thursday for more chemo.   However knowing he has quite a ways to go to gain strength I asked Dr Sborov to give us more time here if he thought it was possible.    With how aggressive his myeloma became it was a tough call, but he agreed and they moved the chemo plan to next week.   It's encouraging to see him progress.     Dialysis three times a week really zaps his energy,  but he is dedicated to getting better and regaining his independence.   We are hoping in the next couple days he'll feel strong enough to stand and that before we leave here he'll feel comfortable walking a few steps.   That way when he starts chemo next week he can maintain and hopefully continue to progress.   

      One thing we both were worried about was if I would be able to be with him while he was here, so it was a relief to both of us to find that I can.   The past few weeks I've also started to work from the hospital.   It's both a blessing and a challenge.  It's a blessing that I can work remotely,  but a challenge  because it makes already long days longer.  A blessing in some ways because it helps life feel a bit "normal", but also a challenge because I struggle to find the right balance.   There's much to do here at the hospital, much to be done at work and also much to be done to try and pick up the pieces of our life that have been neglected.    One of my most favorite moments has been at the end of the past few days I've climbed into his bed at the end of the day and snuggled in his arms.   Something we haven't been able to do for weeks, it really is a piece of heaven on earth.  

   In looking for a quote to add to this blog, I came across this one that brought me to tears as it was perfectly fitting.   I always think of Chris as a warrior, but I think I should consider myself one.    The past six weeks have been precisely that, hell on earth.   There has been much pain and darkness which I have not written about because it is simply too hard to put into words.   

 

      The past month and a half has been a tough battle for Chris.   Fighting and defying the odds of not just one but two nearly catastrophic medical events.   I think for now he's transitioned to healing instead of surviving.   The precious moments of being able to talk or snuggle with him are are such a gift to both of us and very healing to heart and soul.   Often times, we may not know what to say and resort to saying "I love you" over and over.  That's OK, because it's true.

   

     Aside from another round of chemo we don't know much of what the future holds.   But I'm grateful that we will be together through it all.  

 

    

      

The Playlist

     Last week on Monday, as Chris was emerging from the darkness of the horrible week before we had te opportunity the have music therapy come.   A sweet young woman came with her guitar and offered to play songs for us.    The therapy was good for both of us, and tears streamed down my cheeks the entire time.   

    The three songs Chris picked were:

Over the Rainbow-Israel Kamakawiwoʻole

Amazed -Lonestar 

Livin’ on a Prayer-Bon Jovi

    His song selections were thoughtful.   The first had me grieving for the simpler times of the past, and longing to "Wake up where the clouds are far behind me" and have "trouble melts like lemon drops".   

    The second song was a special request to celebrate a belated anniversary.    It's been one of our songs since before we were married.   How so very much "I wanna spend the rest of my life, with you by my side".   

      The final song could have been our theme song for the past month.   Livin on a Prayer.   We couldn't have made it this far without countless prayers being said by us and on our behalf.  

    After two long weeks, he was moved back to a regular room on Sunday.    This week he's making progress.   Healing takes time and he's got a lot to recover from. Medically he is stable, but he needs more therapy to recover his strength.    In the next few days he will likely be moving to an inpatient rehab hospital where he can receive more therapy.  

      Today music therapy came again.   I teared up a little, but didn't cry as much this time.   The past week seeing Chris improve has been good for my heart.  The three songs he chose were:

Roar - Katy Perry

Take Me Home - John Demver

Amazing Grace

     She slightly tweaked the words of the first song to fit perfectly his fight against cancer as the Iron Lion.  The second song, very fitting of course.   We both can't wait to get home, to the place where we belong.  

    These lyrics from Amazing Grace were perfectly fitting of the past 5 weeks.   

"Through many dangers, toils, and snares
I have already come
This grace that brought me safe thus far

And grace will lead me home"

    Hopefully one day soon, we will be back home...