Saturday, December 1, 2012

Day 32- the Advent of a new man

We have been quite busy the last few weeks so I apologize for the lack of information on Dan's progress.  He promises me he will make his post-transplant blogging debut soon, but I wanted to share the latest first.  Dan responded very well to GVHD treatment and his symptoms cleared up within hours of his first dose of steroids.  He was discharged from the hospital on day 21 to continue treatment at home.  It was an emotional exit as we closed the door to one chapter of our journey and opened the door to the next.  Dan hadn't set foot outside his hospital room in over two weeks and hadn't smelled fresh, albeit rainy, air in almost four. We loaded up with prescriptions and medical supplies galore and off we went.

I liken our first night to bringing home a brand new baby.  I imagine that, while you are excited to have your baby home, there is probably some anxiety with the realization that you are 100% responsible for its well-being.  By the time we got home Dan was due for his evening meds so I nervously rummaged through a pile of bottles.  It was impossible to sort them out in my head so I  became overwhelmed and almost regretted consenting to Dan's discharge.  Needless to say, neither of us slept much that night as our heads spun with "what ifs" and a complicated medication schedule.  Groggy and anxious, we headed to the clinic our first day home to meet with the "yellow team" doctors, nurse, and dietitian.  I spent some time creating a spreadsheet to log Dan's medications, IV hydration, temperature, food/drink, and exercise.  Everyone remarked positively about Dan's progress so we went home from an overwhelming day feeling a little more confident and a lot less anxious.  The first few days Dan spent much of his time relaxing and taking it easy while making slow, steady gains in eating, drinking, and exercising to rebuild his strength.
We had a blessed Thanksgiving with my brother, Colin and sister-in-law/high school friend, Kathleen who flew to the Pacific Northwest from Alabama. We shared lots of great meals, took some nice walks, drank seasonal Starbucks treats, and enjoyed quality down-time we'd all been craving.  When they left on Tuesday, Dan was eating and drinking about 75% of his normal amount and walking almost three miles a day.  The sun peeked out a few times so we even got to enjoy many of Seattle's best tourist sites! We are so grateful to "the Alabama Gablers" for spending a special Thanksgiving with us that we will cherish forever.     
So here we are on day 32 and things are going as well as can be.  Dan takes medication about every three hours adding up to more than 25 pills a day, in addition to liquid medication, IV hydration, and our newest addition, steroid cream.  Some skin rash GVHD popped up so we're applying a cream three times per day.  Between picking up prescriptions, having bandage changes, rashes, questions, in addition to regularly scheduled appointments, we have been back and forth to the clinic at least once every day.  It really is a full time job for both Dan as a patient and me as a caregiver, but that's why we're here.  We have taken a break from our "normal" life to make this our full-time gig, and so far, so good.  We've officially completed one third of our stay here and we're encouraged about the next two thirds.
As I mentioned on facebook yesterday, Dan had a routine bone marrow biopsy to determine the percentage of Dan's marrow that is his versus his donor's.  He also had the first of four routine spinal taps with chemo to keep any disease from developing in his spinal fluid.  We won't have results until at least Monday so I will do my best to paraphrase results as soon as we get them.  As always, we're anxious (not worried) about what pathology will find, but we are enjoying the weekend and keeping the "what ifs" out of our minds.  We are all decorated for Christmas and look forward to the start of the Advent season tomorrow, which marks the prayerful beginning of the preparation for Jesus' birth.  It will certainly be a different kind of Christmas, but we have many blessings to share since Dan's new "birth" just 32 days ago. 
Hope you all have a Christmasy weekend-

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