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

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.

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.