Pharmaceutical Moonlight Madness

At 1:30 am the moon will be at it’s fullest.  After an evening out, I’ve tried to make it a habit to look up when I find myself approaching my parents’ backdoor.  I spend at least 3 – 5 minutes looking up and through the telephone wires, peering through the haze of city lights and into the urbanized version of the night sky.  First, I stare at the moon, then I look for Orion’s Belt, then the Big Dipper and then… well, I just keep staring.  I don’t really think of anything particular.  You don’t really have to.  The expansive, mysterious, beautiful universe just stares right back at you, it’s countless luminous eyes saying, “there are things in this world that the mind will never comprehend.”  The moon pipes up with a p.s. – “… and that’s not a bad thing.” 

I could do with a “moon face to moon face” pep talk tonight.  I’ve been inside all day feeling like crap:  Brain foggy fuzzy throbby tired achy pissy CRAP. It’s the typical lupian drama, but I’m still getting used to the return of these old friends after over 4 months of absence.  I welcome them back, of course, since it is a fair exchange for my increasingly lucid mind.  Lucid.  What does that even mean anyway?  

Blood tests are in.  Chemo Train of Love has been taken off the rails.  My pills line up in front of me:  The ol’ 8 year vet, Plaquenil, the lung/infection warrior Dapsone, sunshiney Vitamin D, the bone protectors, Calcium and Alendronic Acid, and Evil P, the steroidal asshole in the corner.  I have relieved my ovary warrior, Aviane, in light of the demise of the chemo train.  On Friday at my rheumatology appointment, I expected the appearance of a new recruit (chemo’s replacement), Imuran, but instead was introduced to Cellcept, a stronger, scarier version of the latter.

Army metaphors aside, my point is that my “lucid” mind is feeling a bit pissy about being neck deep in pharmaceutical madness.  Side effect lists are scary, depressing and disgustingly insufficient in details.  I hate drugs.  I HATE THEM and I especially loathe Evil P, but the only way I can get off prednisone is to take an immunosuppressant (Imuran, Cellcept).  Chemo is too toxic and dangerous to be on for a long time, so an immunosuppressant is a “safer” replacement while I continue to wean off the prednisone.  The side effect list for Cellcept is long, depressing and includes lovely things like a stern warning that if the pill should break, do not let the powder touch your skin. Cellcept is a step up in strength from Imuran and while Imuran has equally icky side effects, in comparison, it is the more attractive of the two.  I went online to view discussion groups on both Imuran and Cellcept and to be perfectly honest, I’m pretty much screwed either way.  It’s true that I might not get any side effects at all… I will definitely hold out hope for that.

After much stressing and anxiety, I called the rheumatology office and expressed my concerns to the rheumatology nurse.  To my relief, he was very understanding and supportive when I said I wanted to take the Imuran instead.  I will gladly take the Cellcept if the Imuran proves ineffective.  Why go ultra toxic when you only have to go mega? 

And so the experimentation continues.  I apologetically thank my body for its patience.  I cross my fingers for the best.  The moon is round and luminous and tonight she says, “suck it up, baby.  This too shall pass.” 

I think I’ll put on my jacket and make her say it to my face.

Blood Test # 189837485

Date:  November 25, 2009

Patient:  Lupian Lab Rat

Current Medications:  Completed 4 cycles of chemo by IV.  Daily:  400 mg Hydroxychloroquine Sulfate (Plaquenil), 15 mg of Prednisone (weaned from 60 mg), 100 mg Dapsone (for lung/infection protection), 2000 IU Vitamin D (to make up for loss due to chemo), 2500 mg of Calcium (for bone protection), Aviane (for ovary protection).  Weekly: 70 mg Alendronic Acid (for bone protection).

General Instructions:  Go to blood lab.  Take number.  Wait.  Look at blood order.  Try to remember what “sedimentation rate” is and why it’s important.  Give up on remembering what “sedimentation rate” is and why it’s important.  Hear number called.  Sit in chair.  Take sweater off/roll up sleeves.  Watch as lab tech person wraps smelly blue strap around upper arm.  Close fist before lab tech tells you to.  Watch as lab tech taps arm.  Close eyes.  Open eyes slightly to see lab tech poking around inside a vein. Breathe. Repeat.  Repeat.  Repeat.  Other arm.  Repeat.  Repeat.  Repeat.  Go back to other arm if needed. Press down on gauze once needle is out.  Watch as lab tech puts medical tape over gauze.  Frown as lab tech puts medical tape over arm hair.  Take sterilized container to bathroom.  Open container.  Wonder if it’s actually sterilized.  Pee a little.  Place container in area where pee just came out.  Sigh as pee goes on hand.  Wipe hand and container.  Close container.  Look at contents of container.  Feel guilty that there is pee on the outside of the container.  Wonder if the lab techs testing the pee wear gloves.  Wash hands.  Drop container in “pee mailbox.” 

Go home. Pick up The Lupus Book: A Guide for Patients and Families off dining room table.  Find folded note stuck to inside cover with medical tape.  Open.  Read:  

Laugh at last line.  Stare at note. Show note to Dad.  Listen to description of forgotten hospital events.  Frown.  Reread last line.  Smile.  Refold note.  Close book.

Follow-up Instructions:  Go to rheumatologist appointment at 12:15 pm, Friday, November 27, 2009.*

*IMPORTANT:  Definitive reasons or answers to anything are not guaranteed.