Expiration Dates

       It's hard to believe that it's been more than two and a half years since I started this blog and that we are a month into year three of battling myeloma   It feels like an entire lifetime and just a short moment all at the same time.  The blog started as a way to keep family and friends up to date on a very difficult stay in the ICU and then ended up being so much more.   I've often referred back to it when trying to recall a time frame or event.  It's helped me to have clarity and to realize just how far we've come.

      The week after Thanksviging, we start cycle 22 of DRd (Approx Cycle 27 of chemo overall).   They recently ran labs to check all of his myeloma markers, the chemo is working and his myeloma is still in sCR (Stringent Complete Response).  We are grateful this year that his chemo has lined up that his off weeks will be on Thanksgiving and Christmas, so he can be feeling his best.    We are also so very grateful that it is working and for the time we have together.

      Earlier this fall during a session of general conference the choir sang the song "A Child's Prayer".   Tears were streaming down my face as I recalled that life changing day when we found out he likely had multiple myeloma.  I would catch him waving his hand, as if to music, and thought Queen was likely running through his head, instead I was humbled with his response.   (Close Around Me).   Simply hearing this song, as we also did during the primary program in church a couple weeks before brings up so many emotions.   We have very often felt heaven close around us and surrounded in love. 

    Earlier this year I was cleaning out my fridge.  As I pulled food out that expired before Chris's myeloma diagnosis, I realized that it had been more than two years since I had last done so.  Don't be alarmed...I've thrown away bad food and done simple maintenance cleaning but a deep clean was long over due.   However it was another thing on a long list of things needing attention.   I felt like a failure.   To make things more complicated... some food had an expiration date but with no year.   For most people when cleaning out your fridge a year in the expiration date usually isn't needed but life had been so much a blur that  I couldn't recall if I'd bought it recently and likely still good.   Plus even expiration dates aren't clearly defined and are often "Best By" "Sell By" "Use or Freeze by" "Fresh Until".   

      With expiration dates of food on my mind,  it turned my thoughts to the 3-5 years survival estimate that we were given at diagnosis.   It's something I ponder quite frequently and depending on the day, sometimes regret asking.    Are we more than half way through this battle?   Or are we still in the early years.   Will he beat the odds and outlive the statistics or will things suddenly change or a simple infection be too hard for his body to fight off.      While it's true that no one knows when they are going to die, it's so very different from being told that about an incurable cancer.   Most people rarely think about the possibility that they could be in a fatal car accident when they get in a car.   Or worry about being struck and killed by lighting.   People in Utah occasionally think about the fact that there could be a "Big One" one day, but it's not something that dictates many of their day to day choices.   We are faced daily with reminders and decisions that remind us just how fragile life is.

     This fall we've been facing more than normal the financial implications of cancer.   We are grateful that Chris has had a job that has allowed him to work from home.   However changes at his work have cut back his hours earlier and more than we were prepared for.  We aren't quite sure what, if anything will be available when they ramp back up in the spring.   As well insurance renewal season with my work was worse than we expected.   Like everyone, we've watched our premiums increase  over the years.   This coming year our monthly premium dropped by $3.   However, our out of pocket costs increased by about half.   His chemo on January 2nd will quickly fill that.    I miss the days where we didn't like the idea of a FSA card because we weren't sure what our expenses would be.  Now we wish that they would update the FSA amount to actually be able to cover the expenses we know we will incur.   Compared to others our insurance has been pretty decent to work with.   We often have to battle with some providers (IHC being the WORST) to get things covered, but thankfully have not had much push back from insurance on the major things like chemo. 

    The struggle to find the balance between all the things we need to do and the things we want to do is such a difficult balance.   Work and medical stuff takes a major chunk, sleep another.   However we are always striving to to carve out more time for the things that make life worth living...even if this means that often our house is piled with laundry or dirty dishes.   We have an amazing teenage neighbor who helps us with the kitchen, for which we both are so grateful. 

    This past week after a long week at work I choose snuggling on the couch with Chris watching The Mandalorian rather than any number of tasks around our house.   It was a fantastic way to end the week.