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Adventures with Infusions

September 23, 2014

I had my first infusion today.  Here’s how it went.

7am. Alarm went off.  Snooze button

7:10 am  Alarm went off.  Started reading email on my phone in bed, to avoid getting out of bed.

7:30 am  Hubby asked if I was planning to get out of bed.  I believe I might just have whined a little.  OK, a lot.  I imitated a grown-up and got out of bed and got ready for my super-fun day.

8:00 am  Made myself eat breakfast, drink a strong cup of tea, and take my meds.  Ick.  I have no appetite but food is fuel, right?

8:10 am Left the house.

9:00 am Pulled into the parking lot.  ON TIME!  YAHOO!!

9:30 am Was called into the infusion suite.  I was so glad that I told my husband to stay home (he offered to accompany me).  There was nowhere for the poor man to sit.

9:40 am Lost a vein


9:50 am Lost another vein


10:00 am NAILED IT!


But I lost the use of my hand for the duration.  Bummer!  I had plans to sew, snack, write, etc.  With one hand immobilized, I could only play on my phone.

10:15 Saline IV

10:30 Benadryl IV

10:45 Coma.  You try staying awake with a Benadryl IV.  Can’t be done.  I felt like I belted back 4 Cosmopolitans, without any of the fun of 4 Cosmopolitans!

11:15 or so.  Can’t really remember.  Coma and all of that.  Steroid in the IV.

Noonish.  Started the party drugs.


That big bag cost $5600 and has to be full of unicorn tears or something else extremely valuable.

12:30 pm.  Increased the party drugs.

1:00 pm.  Reacted to the party drugs.  The nurses weren’t always in the infusion suite and I was having trouble breathing.  I’m not a panic-er, but I have become dependent upon oxygen in recent years.  I was hoping a nurse would come in before I had to start making a scene.  She did, thankfully, and she stopped my drugs for a while until I could breathe again.  I think I love her.

2:00 pm.  Restarted the part drugs.  Slowly.

2:30 pm.  Realize this was the best investment I’ve ever made


A battery for my cell phone.  iPhone batteries are awful and I spent the whole day on FaceBook and Words with Friends.  My right thumb got quite a workout today.

3:00 pm – 5:00 pm.  Drip.  Drip.  Drip..


My view for all of those hours.  ZZZZzzzzzzzzz

5:30 pm  SWEET FREEDOM!  I raced to the ladies’ room. and then hit the road.  I ate crackers and drank a Sprite in the car since I couldn’t open them one-handed in the infusion suite.  Next time: PRE-OPEN MY FOOD!

6:45 pm HOME!  I got stuck behind a disabled tractor trailer so it took a while.

Once I got home and took off my bandages, I looked like a voodoo doll belonging to a pre-menstrual woman with anger-management issues.  I was feeling groggy and headache-y, but around 8pm the nausea and wooziness hit me.  My husband has me set up comfortably on the sofa with my laptop and a quilt.  He’s a gem, have I mentioned that?

I don’t know what tomorrow will bring but today was so much better than I envisioned.  Things didn’t go perfectly with the infusion and it took way longer than I expected, but what ever goes perfectly or on time?  I expected to be spending my evening on the bathroom floor.  A comfy couch and quilt is far better than that.


  • wear comfy clothes. in layers.
  • pre-open all snacks
  • expect to get nothing done
  • ask for help the second I think I’m in trouble instead of waiting until I’m certain
  • bring a spare battery for the cell phone
  • clear my calendar for the rest of the day
  • know not to bring company.  NO ROOM!
  • know that I can drive myself.  that is a huge relief.

I get to have all of this fun again in 13 more days.  All sarcasm aside, I’m glad I have medical options, as bizarre and expensive as they are.  Twenty years ago, the life expectancy of this disease was 5-7 years.  I’m already 5 years in and have plans for decades more!


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