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.