That Wasn’t So Scary


$15,000 bucks a pop

I’ve completed two IVIG infusions.  On my first visit to St. Louis University’s Cancer Center, I was pretty scared but did my best to not freak out.  Initially the process was surreal, driving in the rain during rush hour, trying to find the dang place, getting lost inside the hospital … my feet felt like concrete and I couldn’t walk very fast. The infusion center actually looked like a nice day-spa, if you ignore the IV polls.  Nice pictures on the wall, gobs of magazines, TV’s at each comfy, oversized lounge chair, warm blankets to cuddle with, side-tables with cup holders … low lighting and soft laughter from the nurses who fluttered about.  On closer inspection, I noticed the emesis trays at each table, a row of  baseball hats to wear if the need arises, and catalogues for wigs, scarves and hats.  Serious scary stuff.  My nurses, Angela and Mary, were so very kind and reassuring.  They were also happy to see a patient with veins that haven’t collapsed yet and had no trouble finding a good place for the IV port in my hand.  I was all ready to rock and roll until my nurse told me I’d have to wait about an hour before starting.  Whey I asked why she said with a smile, “This stuff is really expensive so until I see the whites of your eyes and the needle in your vein, we don’t prepare the medicine.” I don’t blame her.

I was prepared, or so I thought, for any possible scenario, except for what I experienced.  I was zonked out on Benadryl and could hardly stay awake!  I suppose that was a good thing, as I eventually drifted into a fuzzy nap for a couple hours, interrupted only by the little infuse-o-meter beeping every 30 minutes.  Occasionally there’d be a text message on my phone from my sister, a friend, and my boss.

Around noontime the place was completely booked up with patients young and old.  Some had PICC lines, some had portable infusion packs.  I saw bald heads, wigs, hats and full heads of hair.  Many folks had headphones and were either listening to music or watching television.  Visitors were nearby and they mostly read or shuffled in and out.  There was a big table with a jigsaw puzzle that people worked on.  A dining room offered tea, coffee, soft drinks and snacks.

Some patients were very chatty and others, like me, were not.  Ever the introvert, I made some small talk with an elderly patient next to me when she couldn’t figure how to unplug her IV pole.  I was impressed with the silent acceptance and respectful vibe in the room.  Several patients were obviously quite ill and uncomfortable.  One got sick in her chair.  Some people were there for just an hour or so and a few, including me, were there all day.   A friend came by with lunch in the afternoon and hung out with me until it was time to leave.

I was pretty tired that day and the day after.  At times, it was a challenge to stay away at work the next day.  During the second infusion I had a little trouble with getting too cold, so the infusion rate was slowed and that, along with a couple extra blankets, solved the problem.

So for those of you out there potentially facing a similar experience, I’m here to tell you that it’s not as bad as you might think.

I don’t have a bald head.  I don’t use a wheelchair.  I don’t walk with an abnormal gait.  I’m not a celebrity or a famous author.  I don’t stand out in a crowd of people.   I’m just a regular person trying to deal with an absurd, incurable, illness that doesn’t look sick.  And I’m writing because you need to know that the world is full of people just like me.  My goal is to bring understanding, humor, levity, comfort and hope to anybody that needs or loves someone who is invisibly disabled.  Sometimes, it’s not so scary.


3 responses »

  1. Gracefully said….

    I know your insights will not only help you to process and cope but inspire others who are challenged in similar ways. You go girl!!!!!!!!

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