Week 8: The Upswing

Today is Saturday.  I go home today.

As I type those words, I am bombarded with a myriad of emotions ranging from ecstatic to terrified.  I have lived the last 8 weeks – 57 days to be exact – in a protected bubble.  My meals have been delivered three times a day, containing foods that are safe for me to eat in my immuno-compromised state.  My care team has measured every ounce that I drink and every ounce that I expel (quite literally).  I have been monitored around the clock, had my bed sheets changed daily, been given every medication my body needed to fight this cancer.  A protected environment.  Safe.

Now, faced with the thought of stepping outside into sunlight and unprocessed air for the first time in eight weeks, I am anxious.  What if I breathe in something unsafe?  What if I walk past a person who sneezes right in my direction without covering their mouth and nose and I catch something that lands me right back in here?  What if I start to get a fever?  What if I get a headache?  What will it be like to drive?  To shower without an IV line in my body?  To cook my own meals and get to choose what I want to eat?

I am very much an independent person.  I’ve always walked to my own beat, done as much as I can for myself.  I greatly dislike asking for help.  I will often exhaust myself doing something just so I don’t have to ask for help.

But the last 57 days have changed me.  I’ve learned many new vocabulary words during this journey.  Leukemia.  Blast cells.  Bone marrow biopsy (I still shudder at that one).  Mucositis, dysgeusia, cross-match, HLA.  Just a drop in the bucket.  I can tell you the normal range for many blood levels without batting an eyelash, and have learned about many medications and their uses.  But the most important word I have learned is help.  Sometimes it is just a look, when the pain is too great to speak.  Sometimes it is understood – the result of a nurse who really knows her patient.  And more often than not, I have just learned to ask.

And when I have asked, someone has always been there in a matter of minutes.  But now, as I leave the safe confines of the cancer center for the great big world, I will be largely responsible for my own care.  Unfortunately, due to environmental concerns in my house, I will be going to a hotel for now.  Trading one isolation for another – but without the assurance that a nurse or doctor waits just a few feet away if needed.  And that’s a little scary.

Just as scary as leaving is, it is equally joyful.  The same things that scare me, thrill me.  I will be able to spend time with my kids without having a mask on and going to a special waiting area.  I can hold them for hours . . . or at least as long as two eight-year-old boys will allow their hug-starved mom to hold them.  I can smell flowers again.  Grass.  Air.  Take a walk around the block without towing Roger-the-IV-pole along.  Sleep in a non-hospital bed.  Eat fresh fruit until I can’t stand it.  Go to work.  Wear real clothes.  I need to type that one again: wear real clothes.  I have no idea how my wardrobe will even fit now, but I can’t wait to dress in something other than a hospital gown or pajamas.  Though I have to admit, I’ve collected some really nice pj’s during these two months.  🙂

Of course, my mind turns toward what is next.  I will likely only be out of the hospital for a few weeks before returning for transplant.  And then I will be out of work for six months to a year.  Also scary words to type.  I have no clue how that will work out for my family.  But I trust that God will take care of me as He always has.  I have a feeling He is used to hearing the word help.

There is a psalm from the Bible that has been extra special to me during this stage of my cancer journey.

I lift up my eyes to the hills – where does my help come from?

My help comes from the Lord, the Maker of heaven and earth.

He will not let your foot slip – He who watches over your will not slumber;

Indeed, He who watches over Israel will neither slumber nor sleep.

The Lord watches over you – the Lord is your shade at your right hand;

The sun will not harm you by day, nor the moon by night.

The Lord will keep you from all harm – He will watch over your life;

The Lord will watch over your coming and going both now and forevermore.

Psalm 121.

There was a song that instantly flew into my head yesterday when I got the definite news that I was going home today.  I played the entire album the rest of the day.  Breathe deep today, my dear friends.  And count your blessings on this beautiful day.

Beautiful Day, U2