Another Day, Another Blood Test

“My veins are really small, so you will probably have to try both arms,” I suggested as I wriggled out of my winter jacket.  Snapping on his gloves, the lab tech retorted,

“Why do I have to?”

I could feel my face scrunch in confusion.  Is that supposed to be a joke, buddy?  After a moment, he chortled out a laugh in confirmation.  He started to prod my left arm in an attempt to coerce a useable vein out of hiding.  Unsuccessful, he took his glove off and tried again.  I stared at his bear finger.  Was it really doing a better job than it’s gloved counterpart?

“You can release your fist now,” He said as I watched the red flow into the first of five thin, long tubes.  My fist was, in fact, released (I think I know the drill by now), but I had left my fingers curled, so that the tips were hidden from view.  It was very cold that day and the short run from the parkade had my Raynaud’s out in full force.  I had been inside for at least fifteen minutes, but I could see that three of my fingers were still yellow, nearly glowing against the purple and red of my slowly recovering hand.  Reluctantly, I fully extended my fingers.

“Oh my God!  What happened to your hand!”

Although fully expected, I felt a bit put out by this reaction. For a moment, I was angry:

Hellooo, this is a frickin’ hospital blood lab, buddy.  People come here because there is something wrong with them, so no, nothing has “happened” to my hand, it’s just the way it is because I’m sick.  You know, SICK, like everyone else around here.  Get it??

Feeling silly and mean for my inner tantrum, I tried to murmur an explanation.  “Oh, it’s because I have Lupus, which gives me Raynaud’s and…”  He nodded politely and didn’t say another word until he handed me the urine sample bottle I needed to fill.  I noticed that we both avoided eye contact.  My yellow hand tingled as I took the bottle from him.  Oh Raynaud’s, making things a bit awkward today, aren’t you?

Generally, Raynaud’s doesn’t bother me very much.  I’m used to the pain now, I know how to warm up, how long it takes, what to expect, and it’s easy to hide (well, except during blood tests).  I tried taking pills for it back in the day when it just started and I was being a wuss about it, but they made me sleepy and I couldn’t drive when I was on it, so I sucked it up and learned to live with it.  I find it interesting, actually. Because of the colour changes, I have the ability to see the healing process of my hands and feet.  It’s like I’m see through.  That’s kind of cool, right?

Okay, so with all this blood test talk coming up again, I suppose I should give you a long overdue “lupie status update:”

I’m back to weaning off Evil P again. I’ve been on 2.5 mg every second day for a about a month and this week, I started to take it every third day.  In two to three weeks, I will take it every fourth and so on.  After all the decreased white blood cell nonsense, Dr. H has taken Big M off my medication list.  It’s actually official, people:  Big M is not for me.  She wants to see if my lupus can remain stable on just plaquenil before trying another medication.  I was shocked.  Is it really possible that my lupus is stable enough to just be on plaquenil again?  It feels hard to believe and I won’t get my hopes up too high, but it feels good to know that I’ve gone from 14 pills a day (and four rounds of chemo) to the possibility of only two in a year and four months.  It’s been a long road and I know it’s not over yet, but I feel rewarded, even if it’s just a possibility.  My little Raynaud’s story was from my monthly blood test two days ago, so we’ll see what my body has to say about this whole thing…

And so, I prepare for another chilly day, where I will most likely be tucking my little, yellow hands in my sleeve while I watch my keepers chat over lunch.  And if that is, in fact, all there is on the lupie menu today, then life is pretty damn good.

 

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I’m really tired today… a week of restless, topsy-turvy, bed-headed non- sleep.  

With no Hepatitis in sight, ma petit foie (that cartoon liver of mine) is easing up on it’s squeaky complaints, but just as Imuran leaves the scene, another kid arrives on the toxicity block.  It’s the “Big M” –  Mr. Methyltrexate; a cancer drug that Rheumatoid Arthritis patients take in lower doses and apparently, Lupie patients too.  And so, the search for a suitable replacement for my old friend Cyclophosphamide (Chemo) continues.  

After going up a whole 7.5 mg of “Evil P” (which is most likely the cause of my nights of non-sleep), I am now holding steady at 10 mg of Prednisone.  I haven’t started the “Big M” quite yet.  I told my rheumatology nurse today that I decided to forgo my other option, Cellcept; the side-effect heavy drug I sidelined in favour of Imuran.  The Big M has it’s own list of sicky-ickyness, but the info sheet claims a bedtime dosage could relegate all the pukey, achy fun into sleepy slumber.  Sure, as long as you can actually sleep.  Of course, it’s stupid to speculate on such things when I haven’t even received a call from the pharmacy to pick up my new bag of goodies.  

“People on Methyltrexate can be flare free for up to one and a half to two years.  That’s what we want, isn’t it?” My rheumy nurse asked as I stared at the Methyltrexate Info Sheet.  I nodded.  Sure.  One and a half to two years.  That’s good, right?  That’s good for a Lupie like me, right?  I had always convinced myself that I was one of the lucky ones…  just a mild case of Lupus, that’s all this was.  I’m fully realizing the extent of my denial.  How can it be mild when I had organ involvement from the very start?  I was never medicated properly.  To Dr. H, my wonderful new rheumatologist, well-medicated means little or no pain.  Me?  I thought properly medicated meant somewhat tolerable pain.  It had never occured to me that a person with Lupus could live without pain even if they were taking meds.  

“Take your time,” my rheumy nurse said reassuringly.  He was talking about the choice between Cellcept and Methyltrexate of course, but I was thinking more about the choice to literally TAKE MY TIME, to take it back, to OWN it, even if it’s just for a year or two.  Let’s make it pain-free.  Let’s work part-time.  Let’s make it MY TIME.

 Yes, please.

I glanced up at the torquoise hospital sign that was hanging above us as we spoke in the corridor.  The rheumatology clinic was in repair, resulting in a temporary change of location in the general hospital.  I had found my way there with slow and careful steps, wary of the queasy feeling in my stomach.  Sick people were everywhere, on wheely beds and chairs, beside me in the elevator… ME in the elevator.  My brain fuzz clicked on, buzzing like a neon sign at dusk.  When I approached the unfamiliar receptionists, that’s when I saw it.  The white lettering on the floating, blue-green sign said:  NEUROSCIENCE.  Out of every unit in that hospital, Rheumatology was moved to Brain Central.  I managed to smile at the cleverness of the Universe as flashbacks of Lupus Cerebritis psychosis filled my fuzz-buzzing head.

With one last glance at the sign, I navigated my way back to the elevator.  Almost immediately, I passed another unit to my right that I hadn’t noticed before:  

SPIRITUAL CARE DEVELOPMENT.  

I smiled effortlessly this time.  Nice one, Universe.

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.