cancer. it's not just an astrological sign anymore.

synopsis

2005 was an eventful year, a year full of manic highs and bone-crushing lows. what a difference a year makes: last new year's eve was spent in a carefree haze, watching the fireworks from our 22nd-story apartment in pearl city, oahu, calming down killer and thug (our pet rabbit and kitty, respectively). a year later, we are living in yet another new city, 5,000 miles away from our last hometown; our charming little apartment over pearl harbor belongs to someone else; and killer and thug are no longer with us. the return of hubby's leukemia has influenced every facet of our life in a way that is truly mind-boggling. following is my meager attempt to quantify the sea change that was 2005.


january: after six months of scrimping and waiting, hubby and i finally went on our honeymoon to hawaii volcanoes national park. a truly magical week of hiking, marshmallow roasting, and snuggling together to beat the nighttime temperatures of 30-40 degrees ensued.

february: after ignoring some now-ominous signs, and a misdiagnosis by an idiot of a primary care physician, hubby's relapse was diagnosed on saturday, the 19th. treatment started the following wednesday.

march & april: hubby began a routine of one week inpatient at the hospital, and one week off. it wasn't planned this way, but there were several complications along the way that mandated his hospital stays. when traditional chemotherapy regimens failed to cease the production of blast cells, a marrow transplant was deemed necessary. our wonderful oncologist subsequnetly began the process of enrolling us in the john hopkins transplant program. the pressure of performing at my job, acting as a caregiver and advocate for my husband, making arrangements for the move, finding a new job in the vicinity of johns hopkins, keeping our family members and friends posted on hubby’s condition, and caring for household duties took its toll on me. i struggled to do it all and felt that i was succeeding at nothing.

may: on the third, hubby and i got our official orders to report to a military base near washington, dc. move date was the 30th--we only had 27 days of lead time during the height of pcs season (when most military members and affiliates move to new bases) to make all of the necessary arrangements to move (the standard is 60 days). much hilarity ensued.

june: hubby, thug, and i arrived in maryland, i started my new job, and we met the head of our medical team in baltimore. (killer was adopted by a dear friend of mine on oahu, as many commercial carriers will not allow rabbits to fly.) we also adopted a new kitty from our local humane society, makoa. we spent less than a week in temporary housing, and began patiently waiting for our furniture, clothes, and car to arrive off of the cargo ship. it all came during the last week of the month.

july: after receiving some startling letters from the national bone marrow registry ("there is not a complete match for you in our database at this time"), our medical team decided to go with a non-matched transplant. hubby's older brother, jeremy, agreed to be the tissue donor. i broke the news to my new employer, who was understandably concerned but not too happy. we settled into our new apartment.

august: medical tests, medical tests, medical tests. oh, and when we weren't running back and forth between three medical facilities, i organized my first two major events at work: a week-long theatre camp and a family fitness day. also, hubby and i began making the necessary arrangements for our temporary move to baltimore (our third move since may). thug, the best feline to have ever graced either maryland or hawaii, passed away prematurely from feline infectious peritonitis.

september: with the tranplant date looming in our minds, we did what any responsible adults would do: we ditched town and went to the beach for labor day weekend. hubby and i learned how to pick boiled crabs, got our pictures taken on the boardwalk, swam in the ocean until we were quite happily sunburnt and exhausted, and capped off the whole experience with a hand-in-hand walk up the beach. we moved to baltimore to begin the transplant process the following friday. after two weeks of premeds, september 20 was the apex of our existence: this was the day that we had been preparing for since march. it was also this day that would change our lives forever afterward. the one-liter bag of marrow that dripped into his veins at a maddeningly slow rate was hubby's last chance.

october: hubby spent the entire month in baltimore. i was there as caregiver during the week, and went back to waldorf on the weekends to work and check on our other apartment while his dad watched over him. hubby became neutropenic due to the meds, forcing us to stay inside and sterilize everything we could. the neutropenia proceeded to permanently warp the way we viewed the world.

november: hubby's white cells came back!! our release date from the transplant program was 23 november. his red cells still were lagging, but arrangements were made to have him monitored at a local facility. after thanksgiving, i returned to work.

december: hubby's new marrow had trouble making the proper amount of red blood cells. (this is still ongoing, but getting gradually better.) his hair is coming back. in three short months, he will be able to start looking for work--and we might start actually being able to pass for a "normal" couple.

one never plans to come down with a life-threatening illness. our lives, as have many others, took many unexpected turns in 2005. leukemia has moved us across the country, changed the direction of our careers, and forced us to postpone or altogether cancel our long-term plans. it challenged the patterns of interaction that had been laid out during the first months of our marriage.

hubby's relapse contested our priorities. i don't equate "what i do" with "who i am" anymore. much to my supervisor's dismay, it's just not worth it to me anymore to put in long, unpaid hours in the name of advancement and success. my success--no, my LIFE--is at home, cozied up under his favorite quilt, getting stronger and healthier every day.

to those of you who are still reading this manifesto, if you carry nothing else away, please remember this: never take anything for granted. although we would like to believe otherwise, human beings' mortality is a fragile thing. there is no guarantee that you will wake up to see tomorrow--and it doesn't matter if you always wear your seatbelt, eat your veggies, or floss. the only way to truly acknowledge this fact is to live each day as fully as you possibly can. eat a cookie for breakfast every once in a while. do something random and crazy at least once a month. reconnect with old friends. challenge your own boundaries, fears, and prejudices. you may not get the opportunity to do this tomorrow, a week, or a year from now.

some say that i now harbor a preoccupation with death. i would argue that i have just begun to live. in the name of new life, happy holidays to you all. may 2006 be a much brighter year than 2005 was.

posted by amanda @ 9:45 AM