Friday, August 24, 2012

Better Safe than Sepsis

It's me again, sharing the last two weeks' chaotic experiences in our world.  I'm writing to you from my usual spot next to Danny's hospital bed as he sleeps to the sound of his trusty pump running a variety of antibiotics and fluids.  Why are we back in Georgetown Hospital, you ask?

Two Mondays ago we heard the news that the chemo regimen in Seattle wasn't working and that we'd have to explore other options to get Dan's leukemia back into remission.  We met with our doctor out there who was, shall I say, no Dr. Broome, and filled us with fear, sadness, and PANIC.  After a brief phone call with Dr. Broome, my sister, and my mom (the usual suspects), Dan and I packed our apartment and we took the red-eye home to Camp Hill.  In a mere 12 hours, we were home and greeted by our smiling moms in the Harrisburg airport.  We were exhausted, traumatized, upset, and worried, but instantly knew we made the right decision in coming home.  After some rest and family time, two days later we were back at Georgetown meeting with our familiar team of doctors and nurses who gave us hope and offered a reasonable regimen to fight off the cancer.  

The chemo lasted 5 days and is a type that treats leukemia differently than previous therapies.  His leukemia has become resistant to "standard" treatment and has outsmarted, in typical Dan fashion, the usual chemo therapies.  He slept a lot those days and experienced some of the nausea, vomiting, and other unpleasant side-effects we so commonly associate with chemo.  The wonderful nurses took care of Dan and made sure that both of us were as comfortable as could be in this disruptive place.  Did I mention we sublet our apartment?  Our friend's cousin is taking care of our place while we are away so Dan and I were left homeless for our short stay in DC.  Luke and Meghan O'Connell so graciously offered me their home on campus in Georgetown, so I was able to get a good night's sleep and fresh cup of coffee every morning just a few steps away from the hospital.  We were also around to see sweet little Faith Mariel O'Connell in her first hours of life and congratulate Luke and Meg on their second child.  The hem-onc unit is right next door to labor and delivery! Little ones lift the spirit and spending time with 2 year old Clare and baby Faith rejuvenated our hope every day :)

Dr. Broome gave us the okay to head home to Camp Hill on Tuesday and we spent a day and a half enjoying my parents' empty house.  The Gabler clan was on vacation at the beach so Dan and I relaxed utilizing the tivo, blender, refrigerator, one big bed for the both of us and all things a home has to offer.  As is the drill when going home with a compromised immune system, Dan diligently took his temperature and closely monitored himself for any possible signs of infection.  Sadly, yesterday morning Dan developed a low grade fever and some chills, so we hopped in the car back to Georgetown where we now sit.  We are waiting to hear if Dan has an infection, but in the meantime he is being treated with antibiotics.  We didn't want to come back to Georgetown so soon, but as my witty husband said yesterday, "better safe than sepsis" - SO TRUE.  The last thing we need is another weekend in the ICU.  We're glad we're here.  The biopsy will still happen today and we will still get the results Tuesday. 

We aren't looking at this as a set-back, just a shorter "vacation" than we expected.  Go figure, you get infections when your immune system is shot.  We would have liked to avoid this, but Dan is in good hands and we'll put this behind us just as we've done so many times before.  We're nervous and anxious about the biopsy today, about the results coming Tuesday, and this brewing infection, but we continue to believe that a transplant is in our future.  School starts back next week and I won't be joining my friends and colleagues, but I am so blessed and fortunate to be able to take the time off to take care of my Dan.  There is no place I'd rather be than right by his (bed)side.   

Monday, August 6, 2012

A Word from the Wife

I'm taking over this blog entry to share the latest updates from our escapades in Seattle so far.  Believe it or not, we're starting our fifth week here and I wish I could say the time has flown.

Let me bring you up to speed.  We spent our first few days getting acquainted with the transplant team, the doctors, nurses, social workers, pulmonologists, cardiologists, and many patients and caregivers living in the SCCA house.  Our world was shattered when, on our 6th day here, we were interrupted in radiology for an unscheduled meeting with our doctor on the transplant team.  He shared with us that the routine biopsy they performed 3 days earlier showed 17% leukemia cells and that his cancer had, once again, relapsed.  This made Dan ineligible for his transplant and is postponed until the leukemia is in remission.

The last 4 weeks have been a whirlwind.  We were shuffled to general oncology with a new team and a new plan.  Dan was put on a chemo regimen immediately that has been consuming much of our time.  We've been enjoying ourselves as much as we can, catching a mariners game, taking walks, playing games, eating at interesting and fun restaurants, watching 5 seasons of Friday Night Lights, and becoming coffee connoisseurs at the never-lacking coffee shops around here (it really is true).  We moved into the long-term housing and have settled into our 1-bedroom apartment.  Since chemo has begun to effect Dan, we've been laying low at home cherishing our time together and I've been stepping up to my caregiver duties.  Through trial and error and a few sleepless nights, we've mastered a successful combination of home remedies and medicine that settle his restless legs, relieve his aching bones/joints, and soothe his nausea.  I've also become an expert smoothie-maker so Dan gets all the nutrition he needs and doesn't lose weight. Dan has been through this so many times and he's pretty good at just dealing with feeling "chemo-y" as he says, and I admire him for that.

Today we got some more bad news.  The biopsy from Friday showed that the leukemia is resisting chemo.  Unfortunately, he has developed some immunities to therapy because he has had them before, so we are consulting with doctors tomorrow about how to proceed.  SCCA has the top transplant center, which is why we came here 4 weeks ago.  Since the relapse and Dan is being treated for leukemia again, we are looking into a center in Houston (MD Anderson) or possibly coming home to participate in a clinical trial or a new cocktail of drugs he hasn't had.  We are far from home and rely so much on our family and friends for strength, so coming home sounds amazing to us right now.  We'd love to find a trial somewhere close to home or have treatment at Georgetown to get Dan ready for the transplant. But, we are prepared to go anywhere.

We don't know what lies ahead and we are devastated by this news.  We're exhausted from this lifestyle of waiting, hoping, and praying, but we know that we have to muster up the strength to keep on keeping on because the road ahead is long.  I love Dan with everything, and through sickness and in health I will love him and cherish him.  Yes, this is not the 2 years I had expected when I married him, but I wouldn't trade it for anything.  We have spent virtually every second together since we got here, and we've fallen more in love every day.  He's the most amazing man I've ever known, and I am so blessed to be his wife.

Thanks for your continued positive words of encouragement, faith, hope, and love.  As Dan has said so many times on here, we are leaning on all of you to help us stay strong.

ALL will (still) be well,