Thursday, March 28, 2013

Day 150 - Carry On

On this Holy Week in our faith and the one year anniversary of leukemia's return, we remember the day that changed our lives.  We vividly recall the minute details from the day that set us on the spiritual journey of a lifetime - a journey filled with fear, sickness, pain, suffering, hope, humility, and love.  We have faced our fears, we have challenged our faith, and we have grown stronger because of it.  We aren't there yet and the road is long, but we know the value of one day at a time and are beginning to see a future filled with health and happiness - and it looks great.    

It was just like any other Tuesday.  I had slept in a bit and was getting ready to head to George Washington University later that afternoon for class.  The phone rang and I answered - little did I know it would change everything from that point forward.  Dr. Broome was on the other line and I immediately heard in the tone of her voice that something was up.  She usually didn't call me in the middle of the day like this and she just sounded serious.  She told me to sit down and to prepare myself for what she was about to say.  Dr. Broome was more than just a physician to us; she had become a friend and a trusted partner on this cancer journey so I felt the pain in her voice as she said, "It's back".  We were both silent for what seemed like an eternity until I started crying and decided not to hold it back.  In her loving and almost motherly way, she explained how sorry she was and how important it was to act quickly on this and that we should start with aggressive chemo the following week.  After assuring her that I was going to be okay, we hung up and I sat on the floor for 10 or 15 minutes (but it could have been an hour for all I knew) in a state of shock.  I wasn't crying anymore but I just felt like I was living somebody else's life.  This could not be happening.....again.  I snapped out of it and knew I needed Hanna with me.  I needed to cry with her, talk this out, and just hold her.  I picked up the phone and called her at work, something I had never done before. 

"Hello?" What I heard on the other line was a voice I'll never forget, an unintelligible voice saying words like leukemia, relapse, chemo, transplant, right away  through sniffles and tears.  Dan asked me to come home right away.  I dismissed my 6th grade social skills lunch group and carefully explained "speech class is over early today" - a particularly difficult concept for my group of students with autism who thrive on routine (a regular, 30 minute session) and who have significant difficulty recognizing social cues (aka your speech teacher hyperventilating).  I pulled it together and my SLP friend, Kelly, escorted the students from our therapy session, allowing me a moment of privacy.  The next few minutes were a blur of emails to my principal and frantic packing of my things while I slowly processed what I had heard.  I raced to my car and immediately called my family, one by one.  Everyone's response was the same, a bit of silence, a few "I'm sorry"s, some tears, a lot of "oh no"s and always "I love you".  I can't remember parking and I don't know how I made it up the 4 flights of stairs to our apartment so quickly, but I'll never forget the look on Dan's face when I walked in the door.  We immediately broke down into a terribly painful fit of tears.  We held each other and soaked our shirts saying "it's okay" over and over, when we really knew that was a lie.  None of this was okay.

It is hard to imagine these events happened one year ago.  So much has happened since then but those moments may as well have been yesterday.  The year that followed has been scattered with high peaks and deep valleys but we scaled them all holding hands, trusting in God, believing in our medical teams (we had many!), and finding joy in every day, even when it seemed impossible.  We finished that night picking each other up, putting our faith and trust in the future, and going out for Mexican dinner.  It might seem like an odd choice of activities but it just felt right at the time.  It was our first jab at stupid cancer and its attempt to ruin our days and get in the way of our lives and precious time together.  I spent last year's Holy Week in the hospital getting chemo and living some small sliver of the suffering of Christ.  This year we are still jumping through medical hoops and living every day with the looming fear of cancer returning, but we are focusing on thanksgiving for being home to celebrate another Easter, for surviving another year, for our doctors, friends, and family, for our marriage which has only been strengthened, and for our faith, which is deeper and fuller and gives us the joy to live every second of every day to its fullest.

Happy Easter and always believe that ALL Will be Well

"We are shining stars, we are invincible, we are who we are.  On our darkest day, when we're miles away, sun will come, we will find our way home"

"Life is a storm ...You will bask in the sunlight one moment, be shattered on the rocks the next. What makes you a man is what you do when that storm comes."
MARCH 2012
Celebrating our 2nd wedding anniversary a little early
in Annapolis, MD before Dan started chemo last year.
Looking forward to a cancer-free 3rd anniversary in 2 weeks!

Sunday, March 10, 2013

Day 130 - Back to Life

I guess it's about time I update you on Dan's progress and our transition back to Virginia.  It's been exactly a month and we're finally settled in, back to life (and reality), feeling the closest we've felt to normal in about a year. 

Our trek home began with a trans-continental flight with two (overweight) checked bags, two (maximum size regulation) carry-ons, two (as large as possible) personal bags, and one back pack jammed full of IV magnesium and about 15 different medications in tow.  Needless to say, our nerves were shot after a stressful TSA encounter with extra scans, questions, and nasty looks by frantic travelers held up in our line.  Once security verified we were just an anxious couple with absolutely no intentions of smuggling a bomb onto the plane, we made our way to the gate where Dan was due for some meds.  To add to the ordeal, Dan threw out his back lifting our (overweight) bag onto the scale and was in excruciating pain, unable to lift a finger. He swallowed his pills while I checked our carry-ons and tried to manage our way too much luggage.  After a brief meltdown, we were on the plane and headed home.  SIGH. The day was stressful, but our anxieties were tempered at the sight of our family smiling at the gate in Harrisburg.  More importantly, there were more than enough hands to remove every single bag from our possession and I didn't lift another finger either.  It was good to be home.

Dan and I spent the weekend in PA, reveling in the fact that we made it, safe and sound, and a new adventure was upon us.  We met with our Georgetown team on Monday and had the reunion we'd been waiting for since our goodbye in September.  There were hugs and tears and medical talk to make the transition a seamless one.  After our appointment, we made our way across the Key Bridge to Virginia soil and our perfect Alexandria apartment.  To our surprise, our friends decorated with balloons, streamers, flowers, and stocked it with groceries to hold us over a day or two until we got to the store.  Our friends proved amazing once again and set the tone for a restful night/day back home.  The previous 48 hours had been extremely exhausting and emotional as we moved out of our Seattle apartment, flew across the country, reunited with family, friends, and doctors, and set foot back into a home that, at one time, we questioned whether or not we'd set foot in together ever again.  Needless to say, we held each other tight that night and counted our blessings.

Since then, I'm a lot calmer, Dan's getting stronger, and we feel kind of like a normal couple - but not quite.  I had a week off then headed back to work in Fairfax County as a speech pathologist in a middle school.  My old position was filled so I'm covering for a maternity leave through the rest of the school year.  Those who know my love for the little guys know that this has been a big transition for me, but I'm finding that middle schoolers have their own uniqueness and I'm even enjoying them a little bit! The girls like my clothes and the boys are impressed with my sports knowledge (as long as it's Philly related!).  I'm getting used to working full-time after 7 months off, but, it's one more sign that we're "normal" so we'll take it.  Dan's getting used to his new life, too.  I've added a "to-do" list to his daily medicine log and he's doing a great job checking them off.  He is slowly taking reigns of errands throughout the week, goes to daily mass, the movies, and gets a walk in every day.  Don't worry, he's still the trivia king and reality TV guru we've all come to know and love. 

Medically speaking, Dan's doing just fine.  He goes to weekly appointments to consult with our doctors and have his blood checked to help manage his medication doses and monitor his blood counts.  The biggest issue keeping him from feeling like himself is fatigue.  He sleeps about 10 hours a night and takes a nap every afternoon to keep up with his exhaustion.  His strength and spirits are steadily increasing, but he gets tired pretty quickly and that's a pain.  He has extreme dry mouth, some rogue rashes here and there, sore muscles, aching bones and a heart rate that can't seem to slow down.  There's always some kind of test to monitor this or check that each week, but overall, everyone seems to be happy with his progress. Again, "that's normal" is the typical response to all Dan's woes.  As you can imagine, I hate missing the appointments and require a thorough recap of everything that was said.  Luckily we joined the iPhone team so I'm hoping to Facetime one of these consults - Dan isn't going for it (I think I embarrass him).  The next big milestone is a bone marrow biopsy and spinal tap in April to check for recurring disease in his marrow and spinal fluid.  They're routine six-month post-transplant tests, but we'll surely be on edge as we approach the dates.  While everything is going well, the possibility of relapse is real and weighs on our shoulders every minute of every day.  Keep the prayers steady that his donor cells are keeping leukemia away for good!

I often talk about little joys and searching for them in every day, maybe most especially during times of adversity and fear.  As we reflect on the little joys we found in November, when a get well card brought us a smile during the toughest times, and December, when a cloudy day spared the rain so we could enjoy a walk, to January, when a warm bath and a good book gave me peace from my caregiver obligations, I'm reminded how very key joy is in living a full life.  Today there were little joys all around me, everywhere I looked.  It's easy when the sun is shining, you're in good health, and everyone is smiling.  It's easy to tell my husband I love him, to feel spring in the air and to thank God for my blessings at Sunday Mass.  But I think it was finding joy on those hard days that taught both Dan and me to live fully, in the truest sense.  We live joyfully, we love wholly, and we laugh sincerely.  Now, I am by no means thanking cancer for teaching me this lesson.  I'm thanking all of you - my family, my friends, and my faith - for bringing us joys, even the ever-so-little joys on the ever-so-dark days of the past year.  I hope to carry that mantra with me and to share it with everyone I meet.  I hope all of you find little joys and live as happily and with as much love as we do.  Because life is good.  And ALL is well.