Sunday, December 30, 2012

Day 61 - 2012, We Bid You Farewell

Great news! Dan's second biopsy came back negative for leukemia cells - no cancer to be found! We are thrilled by the "negative" results  and are finally able to see a light at the end of this 100 day tunnel.  The next hurdle is one last biopsy here around day 80 before the home stretch and long-awaited transcontinental flight back home.  We are so ready.

Our clinic visit this week was uneventful.  The doctor dubbed Dan her most boring patient!  The GVHD rash is managed with the UV light treatment, cream and steroids.  We hang fluids twice per day and Dan follows his rigorous pill schedule, swallowing a cocktail of medication every 2 hours, adding up to at least 20 pills every day.  He has to eat every hour or so to keep up with his appetite (steroid side effect) and spends about an hour per day walking, stretching (yep, Dan does yoga), or climbing stairs to build the muscle that's deteriorated (steroids, again) the last few weeks.  I have become quite familiar with the variety of uses for bleach and find myself sterilizing countertops, remote controls, cell phones, light switches, door handles, fridge handles, microwave handles, and any other handles I can find at least once per day.  I've been expanding my cooking skills a great deal and continue to introduce Dan to a variety of vegetables that he relentlessly turns down.  Alas, I am not giving up.

Dan's immune system is still very immature and not equipped to fight the various germs it encounters, but he can't live in a bubble and we get out as much as we can. Once again, I envision similarities to parenthood as we have our own version of a "diaper bag" we can't leave home without.  We pack snacks, medication, IVs, tissues, chap stick, hand sanitizer, and sanitizing wipes before we step out the door and we make sure we're home in time for an afternoon nap.  We won't have to be quite so cautious forever, but Dan and his new immune system are still getting acquainted.  Our nurse put it like this - Dan and his new blood are like two young siblings in a sandbox.  They argue and throw sand when they're little, inflicting some scrapes, bumps and bruises, but eventually they learn to get along and become best friends.  Right now, the old Dan is still there but with new, foreign, blood running through him.  The "arguing" is flares of GVHD, managed by steroids and other immunosuppressant drugs that keep the new blood from wreaking too much havoc (think fistfuls of sand throwing - and hitting - and hair pulling).  It's a delicate balance between suppressing the new immune system while also allowing it to settle in, hence the 100 day stay and millions of side effects, complications, and issues to manage.  After a time, usually 6 months to a year, the new and the old will live in harmony, then Dan won't need drugs to suppress the new immune system because it will be his.  Dan joked that he and his new marrow will be chumming around at family picnics together in no time.  

The new year starts this week and we couldn't be more excited to say goodbye to 2012 and welcome 2013 with open arms.  We feel more hopeful than ever and know that we've been blessed to get this far.  We don't take a single moment for granted, especially when surrounded by many sad and tragic stories right here.  Cancer touches the very young, the very old, and every one in between and we see it every day.  We see the sadness and we've experienced the fear.  We don't worry about little things because we've been given the perspective that little things just don't matter.  We laugh as much as we can, we hug, we cuddle and we say "I love you" every chance we get.  And when all of this is behind us, when leukemia and "that one Christmas we spent in Seattle" is a faint memory, we'll continue to live this way.  We'll remember what we saw here, the joy, the sadness, the loss, the inspiration, and the love.

So, while I sort of hate you, 2012, you weren't all bad.  At each experience this year, I managed to find some silver lining to remember.  I'll remember how I loved my husband more deeply and how I fully committed to his care.  I'll remember how the most loving, dedicated family supported me and encouraged me to face each day.  I'll also remember my lesson in humility when I graciously accepted the gifts of so many. I'll remember how blessed I was with countless friends, old and new, who lifted me up at every hurdle.  And I'll always, always remember how I found joy from all of you during the hardest year of my life.          

2013, we can't wait to meet you!



  1. Hope you guys have the 2013 you deserve! Sending hugs and warm wishes.... Matt and Kristen

  2. We look forward to hearing your updates in 2013 and I feel certain they will be filled with smiles! Love and prayers sent your way! XXXOOO