Snow Scribble & The Last Test

Hardly five o’clock and the dead of winter takes the day away.  Arms crossed, I stand at the window, watching the snow fall against the naked, elm archways that line my street.  I can feel the wad of cotton still taped and wedged in the crook of my arm.  Earlier today, with my face red from windchill and the long walk from my parking spot, I had finally trudged to the hospital to get my monthly blood tests.  En route to the lab, my rheumatology nurse gently pulled the blood order sheets from my hand:

“You’ve been taken off Methyltrexate, right?  Plaquenil and Prednisone don’t have the liver risk that Methyltrexate has, so you don’t need to have monthly blood tests anymore.  Any problems weaning off the Prednisone?”

I shook my head, telling him I hadn’t noticed anything so far.  He inquired when my next appointment was, nodded, then checked off a few boxes on the blood order sheet.

“You can do the test today, but otherwise, if you have problems before your appointment, just call me.”

So there you have it, folks.  No more monthly blood tests.  My body seems to be holding steady as the pills fall away. If my body can stay strong for four more weeks, I will take my last dose of Evil P after 17 months of having it in my system. Once Evil P is gone, my body is officially starting over.  There’s no miracle drug inside of me that magically takes away the pain.  It’ll just be me and my trusty “upkeep” med, Plaquenil, the way it was before my flare-up. Will it be enough?  Will I be enough?  Cross your fingers for me.

Besides the medication/Lupus update, I wanted to share something that happened to me as I left the gym on Monday evening.  The parking lot was packed with New Year’s resolution junkies and I was forced to park on a side street a few blocks away.  As a shortcut, I meandered though the parking lot behind a mother and her two children.  In my own world, I hardly noticed them until I heard a loud, exasperated sigh.  The mother was wedged between her SUV and another, which was parked so close, a door could hardly be opened between them.  The windshield of the other vehicle was packed with snow, and the mother, her bare finger thrashing violently across the windshield wrote:

“Really?!”

As she dotted the exclamation mark, she yelled it out as her children looked over at me embarrassed.  The mother, suddenly aware of my presence, looked away quickly and hurried over to the other side of the car where her children were standing.  Not wanting to look as though I was staring, I hurried past them.  As I did, I heard the oldest child, who was probably around 11 or 12, say in a soft, sad tone:

“You didn’t have to do that.”

Perhaps, this is a strange thing to say, but it was one of the most interesting and grounding moments I’ve had in a very long time.

I was grateful to receive a message today from a fellow Lupie sister, who sent me her positive thoughts and healing energy from across the globe.  I send them back to her tonight.  It’s dark now and I’m alone here.  Alone, but not really.

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.

 

Remission(ish) & The Next Epic Adventure

I just took a peek at Lisa Ray’s blog and there she was, with her tiny spirals of post-chemo curls and her cancer carol of the moment: “I wish you a long remission, I wish you a long remission.”  And I thought, my hair is back, too, Lisa!  I’m in remission, too, Lisa! … Okay, remissionISH

Lisa Ray and I, we’re an entire disease apart, but when I saw her prednisone-induced puff face on the news over a year ago, our somewhat mirrored experiences gave me hope… and a companion in the fight to get better.  I check in on her every now and then, and it makes me happy to see her proclaim herself as a cancer graduate, a survivor in remission.  She has also, by choice, stopped taking “upkeep medication” since there is no proof that they will keep her in remission longer.

Her decision made me revisit one of my most enduring thoughts:  Will there ever be a day when I can trust my immune system enough not cause cellular apocalypse without major prescription protection?  Will I ever be able to live in my “natural body” again without having to accept crippling pain with the package?

Remission is when symptoms disappear completely for a long period (over 6 months, usually).  This is where the “ish” comes in. I still have Lupus symptoms, but the ugly, nasty ones like tissue, joint, and organ inflammation are mostly incarcerated in the House of P & P (Prednisone & Plaquenil – and lingering traces of Methyltrexate, I suppose).

We pause for a White Blood Cell Update: Last blood test showed I am at 3.0/4.3.  Big M is still banned until next month, when I have my appointment with Dr. H.  Then, (you guessed it) more blood tests.

I guess my point is that I have been given my body back, not fully, but with the proper upkeep, things are actually doable again.  I can finally move, really move. I’ve been updating you on boring medication changes and reflecting on bull shit from the last year, but I haven’t told you what I am doing with this crazy opportunity I have in front of me – this time of remissionish.  I’ve said all along that being really sick is easy, it’s staying well that’s the dirty job, so it’s time to start trying things, to document them here.

After 9 years of hating my body, of cursing my body, I’m going to take it back.  I’m going to learn how to trust it, to move it, to feel part of it instead of separate, instead of an opponent.  And one of the ways I’m doing it is in the most embarrassing, challenging, humbling, and ridiculous ways I can.  Yes, that’s right, it’s already begun:

I’m taking a dance class!

I am excruciatingly bad.  After four classes, it is apparent that I am without a doubt one of the weakest students in class (intro jazz), but I am determined to suck with spectacular awesomeness.  It gets better – there’s also a recital at the end of the year.  If you thought my “Battle of the Brain” was epic, you ain’t seen nothin’ yet…

 

Star Map

It’s late again, and here I am.  Me and the laptop, my constant companion over this year of flux, and even it can’t escape the winds of change (unwrapped software haunts from the kitchen table).

There is a need to be here tonight.  

The picture at the top of this blog feels unsatisfactory in the current moment.  Too corny.  Too literal.  Too expected. It’s trying too hard to be a motivational poster:  “Perseverance!”  “Courage!”  “Determination!”  Or maybe it’s that I’m trying too hard to be a motivational poser.  

The whities are up to 63%, but a strange rash has appeared in many random, irrational places.  And yes, having an itchy bum is hard to accept or understand.  Just sayin’.  Also, it seems that the itch has traveled to my throat alongside a minor case of the sniffles. Drowned in honey ginger tea, this afternoon I watched one of my “Planet Earth” DVDs.  Perhaps, I thought, watching that piranha feeding frenzy will inspire my whities to pep up and restore normalcy to my poor, little bum. Okay, I didn’t actually think that… 

This week I have to go on Evil P everyday instead of every second day, then at the end of the week, I have to tell my doctor if the rash is still there.  Then I go back for blood tests on Monday.  I’m still off the Big M.  I just missed my fourth dose.  

Blah, blah, blah.  

Tonight, I went out for dinner with one of my keepers to one of my favourite restaurants.  I used to go there all the time when I was in high school and university, but I hadn’t been there recently.  It’s small; boxes of incense on sale by the doorway, silver and blue stars draped around a large, potted tree, swirling downwards from the ceiling, resting beneath the glass tabletops.  Huge block mounts of old-style constellation maps and diagrams on walls with silver framed mirrors.  Silvered branches sharing vases with singular green stems, a large, white blossom at the top . Tealights.  A transparent, white cloth hangs between our table and the next.  The intimate murmurs of conversation rush in and out of the spaces between our forks, the distance between our plates.

I don’t know why I’m telling you this, except for that it felt good to be there… even though it was a place I’d been before.

We shall not stop our exploring

And at the end of our exploring

we shall arrive where we started.

and know the place for the first time.

Lisa Ray posted this poem by T.S. Elliot on her blog.  I came across it tonight after lying across my couch writing my first journal entry in two months.  My last two lines read: “I need to explore.  The “finding” is secondary.”

I guess I could probably make my own special motivational poster line:

EXPLORE.

“You don’t need all of your white blood cells to do it.”