Tomorrow’s Eve

 

Mr. Methyltrexate, the “Big M,” has been a resident of my body for 2 months now.  It’s the newest little fish in my red sea.  At my rheumatologist appointment tomorrow, I find out if the “Big M” has enough fighting power to kick “Evil P” off the top of the food chain.  I’ve been waiting and waiting for this day, especially after Imuran smacked my liver around and didn’t make the cut. And here it is.  Tomorrow.  Or at least I hope it’s tomorrow.  I’ve been known to set myself up for some majorly disappointing anti-climactic drama.

On the eve of what I hope to be the beginning of the end of this recent stint with the Evil P, I’ve written a little note to my little white pills:

You stir up a lot of hatred in me, Prednisone.  Primarily, I hate that I will never be able to fully hate you because you saved my life.  A little much with the guilt trip, don’t you think?  We’ve been through a lot together these last 10 months.  You’ve done a lot of really shitty things to me, but you’ve also gotten me to a really good place.  In fact, I’m stronger now then I’ve ever been.  I know what you’re thinking and I’m not an idiot.  I know I’ll probably need you again one day, but that doesn’t mean I need you all the time.  So here’s a heads up, Evil P, tomorrow’s D-Day.  I think it might be time for me to survive without you for a while.  And if it’s not, please promise me you’ll keep the gloating (and the bloating) to a minimum.

Thank you kindly.

Signed sincerely, your host body,

Elena

(Ultra)Sounds of Silence

“Is your Dad still your next of kin?”  The receptionist runs her fingertips across the frayed edges of my health card.  I look at her blankly.  “…Do you want to change it?”

“No, no. That’s fine.”  The waiting room is littered with dads-to-be, the jackets of their expectant partners sit empty in the chairs beside them.  An older couple sits across from me holding hands.  They look up at me as a white-haired woman shuffles towards the ultrasound technician who has just called her name.  I smile.  I have no dad-to-be, folks.  Just my “next-of-kin-dad,” but he’s not here either.  My cartoon-faced liver is my only companion.

“Take a breath in… ”  I suck in, trying to draw my skin away from the cold gel slathering across my belly. “… And hold it.”  I can hear the ultrasound tech’s fingernails click against two buttons interchangedly, a beep and then a click, two more beeps, one more click.  The flourescent lights from the hallway seep through the top mesh of the pastel curtain drawn across the room.  My organs pose for their close up.  In another lifetime, perhaps I would have been perfectly healthy, with my dad-to-be clutching my hand excitedly as we peered at the blobs on the screen, ooing and aahing and convincing ourselves we could see it’s feet.  Instead, I am alone.  If you ask the older couple in the waiting room what I am thinking, I am sure they would say that I am hoping and praying that Lupus will allow life in my belly one day, but instead I’m wondering if I will allow it.  I don’t know if I would even try if I didn’t think I was healthy enough to give my child the energy and attention he or she deserves.

I feel the curve of the transducer press into my side.  “Breathe.”  I let go.  

I let it go.  

These things will be decided, but not today.  I have to learn how to preserve and live my own life before I can even start thinking about taking care of another.  And even if I were healthy, I would not want to be pregnant right now anyway.  Everything is as it should be.  And besides all that, I know that  becoming a mother doesn’t necessarily involve having anything in your belly at all.

That was on Tuesday.  I won’t get results back from the ultrasound for at least a week or so.  I’m not worried.  I think my cartoon liver is one tough cookie.  I started the Big M the evening of my ultrasound after an entire week of “almost taking it.”  Four tiny, yellow pills finally slipped down my throat.  I climbed into bed, lying perfectly still into the early hours of the morning, listening for my body to sound the alarm.  Thus far, all seems to be well.

And now, we wait… and enjoy the silence.

SIGN Language

 

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.

Going with the (Blood) Flow

I had blood taken twice this week.  Same vein.  Today I watched as my blood trickled slowly into each vial, wincing slightly as the needle pulled with the thrust of a fresh container.  The vials rolled against each other as the lab tech tossed them onto the counter; some half full, others to the brim.  If I had reached out and touched them, they would have been warm.  I know this because as a lupus research participant, I had to deliver a couple of fresh ones to the clinic.  I remember feeling startled that I could feel the warmth of my blood against the palm of my hand, like I was carrying around pieces of me, still very much alive.  It was one of the strangest feelings I’ve ever had.  It was like being inside out.

A couple of posts ago, I likened my liver to a talking cartoon who piped up to reaffirm that YES, it’s had quite the shitty deal lately.  I, of course, did not know that my liver was actually saying this at the time I was writing, but lo and behold, it certainly was.  Hence, the blood tests.

 At my follow-up appointment last week, my liver levels were up, which I am assuming to mean that there’s a whole lot of toxicity going on.  Dr. H. thinks it’s because of the Imuran, the medication I started taking in December to replace the chemo.  To be sure, she took me off of it for an entire week cold turkey, asking me to come in the following week for more blood tests.  I did that on Tuesday.  My liver levels haven’t budged.  Dr. H. thinks it may be because the Imuran hasn’t fully drained from my system, but just in case, she had me do blood tests for Hepatitis today and is ordering an ultrasound of my abdomen and liver to ensure I don’t have any blockages.  I have no idea why I would have Hepatitis, but I have no desire to engage in an internet search to find out.  My white blood cells were low both times as well.  Dr. H. thinks that’s also because of the Imuran.  In the meantime, I have been told to up my dose of prednisone back to 15 mg (I was at 7.5) for a week to keep me “covered” as the Imuran drains from my system and then go down to 10mg while we figure this whole thing out.  Yo-yoing with the Evil P isn’t sitting with me very well, but otherwise, I’m feeling fine to just go with the flow.  It’s all an experiment.  All I can do is keep the faith.

I always thought that my first ultrasound of my abdomen would be when I was expecting my first child.  Ah well… maybe I’ll get to see the irritated little face of my liver instead.