The Long Days

During the first 10 days post-chemo, time does not move.  Your mind functions (not well), but your body does not.  You wake up in the morning, hoping to be into double digits (with a 3 year old in the house that is impossible, even if someone else becomes the primary caregiver during this endless downtime).  So you are always disappointed to look at the alarm clock (barely visible through the bottled waters and cold cups of tea on the nightstand) and see numbers like 5 or 6. 

You teach yourself to simply not look at the clock.  If, by some miracle, you fall asleep without chemical assistance (once in a blue moon), you are sure to wake up smack dab in the middle of the night, unable to remember what pill you last took and when. 

Once five days have passed, the fatigue is fully old.  You are tired of having lost the physical desire to move, to roll from your left side to your right.  By day 6, perhaps a burst of energy pushes you to obsessive behaviors like vacuuming or gathering up all of the browsed-through catalogs to put into the recycling bin.  This is short lived as day 7 creeps in with soreness in your shoulders and an intense pulsing that no one else can sense from the outside. 

By day 8 you want to scream, but it requires too much energy.  You haven’t been active in over a week, so likely, neither have your bowels.  Your stomach makes squishy-squashy noises when empty, full or anywhere in between.  So loud, even if you wanted to carry on conversation, it would surely interrupt.  You can't muster up the strength to leave the house, but for a nauseating trip to the doctor's office for a port hook-up fluids drip.  And now, dammit, on top of everything else, you have to pee.

How to pass the time?  Where’s the fast forward button?  The mornings are the worst:  you have a whole day of nothing ahead of you.  Trips to the ladies’ room leave you dizzy and in need of recovery.  A bath is the main goings-on of each day.  If you can make it to 4 pm without one, you have an evening activity!  A bath can last for a long time, if the other inhabitants of your home are willing to use the downstairs potty while you monopolize the only room in the house with a working lock.  (Hint: Do not light candles during bathtime in a small W.C. as it may cause a black ring to form on a porcelain bathtub all around the water's edge, causing questionable concern that the medicine you've been given is so toxic it poisons the bathwater.)

There is always solitaire, which on the ipad, doesn’t require a great deal of movement, but will cause your left hand to go numb if you play for too long due to the stress of poor circulation on the left side of your body.  Television is depressing – TLC has too many baby shows during the daytime and the home improvement channels broadcast an awful lot of reruns.  Netflix is better – especially if you find whole seasons of shows you missed (30 Rock is hysterical).  You can watch them without commercials (and with headphones), late into the night, until you finally fall asleep. 

Mail call is a highlight of each day, though not always the same hour.  Some days the catalogs come before noon, sometimes not until after 4.  Some days there are care packages (yay!) and cards (smile) to remind you that people are thinking about you and wishing they could make it all go away.  Some days come DVDs you forgot you chose, or clothes you ordered a while ago (on sale).  These arrivals make one day different from the next. 


You will love your friends for calling, even if you don't feel like talking.  It reassures you just to see a name on the caller ID.  You will marvel at the way your family continues to take care of you - every single day another sick day that someone (guess who) must devote themselves to: feeding you, cleaning up around you, keeping you company, worrying and smiling all the while.  You will say, "thank you" but know it doesn't really cover everything.

Each day, your child will ask you if your boo boo is all gone yet.  He will want you to brush his teeth and sit next to him at the dinner table and pour his orange juice and sing him a song before bed.  He will want you to get up and laugh at his jokes and play puzzles and be you again.  You will smile and cry with him, his vocabulary growing and his ever- maturing diction continuously amazing you.  You will try to answer his questions – even the hard ones without answers, about other people who have the same kind of boo boo as you – but you won’t always be able to.






You will try not to let your mind wander to sad places with unhappy endings (but you can't always control where it goes), and you will hopefully work your brain to remember blissfully innocent times when the biggest worry you had was to get all of the dinner hot on the table at the same time before someone got too hungry and had a meltdown.  You will want to kick the used clothes (not really dirty laundry) off of your bed and onto the floor so you don't have to sleep at night in the same mess you laid in all day.  

If it is the fall, or winter, you will most definitely need a hat at night because it gets very cold when you have no hair for insulation.  You will keep your fuzzy little head covered all the time (even if the hats are quite unbecoming) because it’s cheaper than turning on the heat.  (Don’t worry, there are sleeping caps that come without the Wee Willy Winky elf tail.) 

And you will need to laugh.  You will need to have someone to tell you over and over again that there is a light at the end of this long, dark tunnel.  You will need people who love you to rub your feet and tickle your back and fix your tea and try not to resent you for needing so darn much from everybody else. 

xxoo