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…

 

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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.”

 

Chemo-Pond Reflections

Third chemo toxin round complete.  Three is a big number for me, it seems.  Let’s see if it ends here…

I came home with battle wounds.  The “needle man” punctured two of my tiny veins right through.  It took over half an hour for him to find a vein that he could actually use.  I am amazed that I have not developed a phobia of needles, especially after my delightful experience with the “spinal tap needle man” in the ER.  No puking, but I had to resign to my bed and that is where I stayed until this evening.  The rheumatology nurse called me to tell me I had to up my dose of Vitamin D because I am too low.  I know it’s probably because of the chemo (it’s known to strip the body of Vitamin D), but it’s more dramatic to think it’s because I live a vampiric existence these days.  The sun hardly ever touches my moon face. 

Lisa Ray, the actress living with bone cancer who inspired me to write this blog had her last chemo the day after I had mine.  She hadn’t written in her blog for weeks.  She said she couldn’t participate in her life, that she was “sitting on the roof” tipping pepperettes and whipped cream into her moon face.  She came back down from the roof, of course, but before she did she asked her readers, “are you fantasizing about a Cancer Vacation?  Cause if I didn’t feel so completely depleted, I’d be having the time of my life.”

I don’t have a rare form of cancer.  I just have lupus.  The timelines of my life are not held in the same menacing way.  I can’t begin to understand what Lisa Ray is going through and yet when she writes those words I feel myself melt right into them, like they were mine.  She too, is on steroids, experiencing night sweats and alterations in her personality, she calls her body her expanding wetsuit and every entry has at least one salute to her ever-expanding moon face and her unquenchable hunger.  I don’t have cancer.  I have lupus.  How can I have the audacity to say that I know what a cancer patient feels like?  Things could be so much worse.

My friends and family tell me to relax.  They tell me to watch movies because they wish they could stay home from work and watch movies.  They tell me to sit back and enjoy my “vacation.”  Have I mentioned that I am now officially on “medical leave?”  I have a great boss and I work for an amazing organization and they have given me time, as much time as I need to rest, to recover, to find myself again, to understand how the wolf has changed me this time around and I can’t even get myself to have a good time while doing it?  Everyone wishes they had this opportunity to sign out for a while, to reflect and all they see is me, sitting on my floor with my moon face in my hands wishing I was back at work again… wishing I was doing SOMETHING, anything.  I’m trying to have “fun.”  I swear.  It’s just that it also feels wrong to “have fun” right now, especially when I know things are so busy at work and also because, well, things just don’t feel very fun-like.  

I am happy though, of course.  I have such an amazing support system.  I am held up by the strongest and most loving people in the world.  They visit me and bring me my favourite treats and take me out to eat my favourite food.  They email me lovely notes telling me how much they love me and how proud they are of me and how strong they think I am being.  I have a roof over my head and lovely home-cooked meals and I get to see the smiling, warm faces of my parents everyday.  I can take walks and sleep in, write stories and read books.  I haven’t had a major manic episode in almost two weeks.  This might be my last chemo treatment.  I am down from 60 mg of prednisone a day to 40 mg.  Life is good… so, why can’t I have “fun?”  I feel like I owe it to all of you, all of you out there working hard without a break.  If I don’t have fun it’s like a slap in the face, time wasted.  That’s the last thing I want to do.  There is no time to waste.   

To be honest, I have found myself thinking about not writing in this blog anymore.  I am still sorting through those feelings… I have been feeling very confused about it’s role in my recovery.  I have been doing a lot of research on lupus, brains, bipolar hypermania and steroidal psychosis lately, even more than usual.  My whole premise for this blog was that “knowledge is power,” that we all have the power to heal ourselves, that in order to do that we have to face our disease full on with openness and courage.  My mania made me unafraid to pour my heart out into the internet world, to share how weak I felt sometimes, the fear and yes, the hope as well, but is it too much?  Should these words be tucked away in my journal somewhere or reserved for late night conversations over tea with close friends?  Am I just as silly as those who twitter their everyday goings-on for people they hardly know?  Is this just some kind of self-centred, self-serving exercise made in throes of mania?  I came across some “knowledge” the night before my chemo treatment that sent me reeling.  It made me question if knowledge is really power at all.  I’ve been in search of knowledge constantly these last two months – I am reading, researching, googling, questioning 24/7 and I don’t feel like I know more at all.  I just feel more confused.  I am no closer to figuring out how I move forward with my life, of what the next step is in regaining the independence I once had.  The only thing that is certain is that I am changed.  What that means in it’s entirety I do not know.  Only time will tell.  So do I just stop and truly “sign out?”  Do I stop researching and blogging and just read fiction and write stories?  Is that the real way to heal?  Is that the real way in which I will discover the Elena left behind after all of this is over?  I, of course, don’t know and I don’t think any of you know the answer either, so maybe the whole point is that there are no answers.  

Well, that’s just unacceptable, people.  There has to be an answer.  There has to be.  I just wish I could trust myself enough to know when I’ve found it.

Scrapping it out with the 7th Deadly Sin

 

Did you know that “sin” actually means “missing the mark?”  This makes a lot of sense to me, since I think we can all agree that the majority of us have missed the point of living quite entirely.  I don’t think it is any accident that as a result we are on the cusp of destroying our planet… and ourselves, but that is the kind of talk I promised not to post here, so I will get to my point. 

PRIDE.  The seventh deadly sin.  I never watched the movie “Seven,” but I think it ends with Gweneth Paltrow pulling something heinous out of a sack.  She named her child Apple, did you know that?  Sorry.  Just had to put that in there.  Vanity goes under the pride category and ladies and gents, it’s fighting dirty and I’m crouched in the corner desperately trying to protect my lady parts.  Lisa Ray, the beautiful actress living with cancer who inspired me to write this blog wrote a post about how she couldn’t understand why the biggest thing she was worried about was being buried with a moon face.  Oh dear Lisa Ray, I hear ya, girl.

Ok, now before you pull out the “Oh Elena, you’re still beautiful blah blah blah CRAP,” you need to just STOP.  Thanks and everything, but that does NOT help.  Be honest with me, people.  I’m being honest with you. My face is obviously fatter, unnaturally fat.  It doesn’t match my body AT ALL; my way too thin, sickly looking body.  I look like a Garbage Pail kid.  A bobble head.  Quagmire from “That Family Guy.”  Ok, so you don’t have to agree with the last three comments, but seriously guys, stop saying you can’t notice.  YOU CAN.  I can take it.  Just freaking admit it.  Did I mention that one of the other places that you retain water and weight when on steroids is your mid-section?  So not only do I look bony and gross, but I also have this weird gut sticking out.  I won’t even go into the “humpback” that might happen.  AND I guess I never mentioned that I have “thrush” right now, this disgusting mouth fungus (yes, I have a freaking fungus in my MOUTH) that happens in people with dysfunctioning immune systems.  It’s okay that you just reeled back in disgust just now because I’ve always been one of those people who sees someone’s cold sore and goes home thinking I’ve got one from being in the same room with it.  Yah, try getting a prince who has enough guts to wake up THIS sleeping “beauty.”  Even the most courageous and sincere and loving of Princes would have second thoughts.  By the way, I have been told that my eyes don’t always fully close when I sleep.  I find that horrifying.  Oh and have I mentioned that my BRAIN IS F***ED UP??  Great.  Great combination.  I can’t even go with the whole, “brains is sexier than the body” thing.  I saw this cartoon in the paper of this cute little cactus sitting alone on a table.  Another character in the strip says, “Who’s this?”  The doodle to the right says, “Oh, this is the lonely cactus.  He’s lonely because no one will hug him.”  “Well, of course no one will hug him.  He has spikes all over him.”  The cactus pipes up and says something like, “See, the inside doesn’t really count.”  It almost made me cry.  

To make matters worse, I had to cut off all my hair, which was down past my shoulders because there were big gaping holes when I put it in a ponytail and each time I shower more falls out and I stand there, blind as a bat, staring at these balls of hair, just staring and staring until I get out and take a picture of it.  You know, in the name of science, of medicine, in case you’d like to see how much I’ve lost.  Sick. I actually don’t think I will lose all of it.  I think it will get really thin and a bit patchy, but nothing crazy.  So, why do I even care right?  Because I don’t understand why I can’t have something, ANYTHING, that will make the rest of that stuff – the mouth fungus, the fat face, the belly that belongs to some other body, being home here in a home that’s not my own, the fact that I still don’t feel like I am well enough to spend more than two hours in public because I am scared my energy and strength will run out and I’ll make a scene – a little bit easier to take?  Can’t I at least have my hair?  My long movie star hair that was just starting to show off it’s slight wave?  Can’t I have that????  So I can at least cover parts of my fat cheeks with it??  Seriously.  

But that’s vanity.  Vanity in all it’s disgusting, powerful glory.  I am ashamed to taken in by it… I am literally in the “Paris Hilton Hall of Shame.”  Sigh.  I am sure you can tell that it has been a bad day today.   A very bad day.  A day where I was honestly wondering if I am in a coma right now or if I’m actually dead and this is the last of my brain activity or if I am actually in a mental hospital and my loved ones are sitting next to me watching me sit motionless in a chair by the window.  And there is a part of me that hopes it’s true, because than that means this is just another one of those crazy illusions my brain has created.  It means I don’t have a moon face.  How sad is that?  How incredible sad and pathetic is that?  You don’t have to answer that, because I know I have just turned into that damned cactus that made me cry.  Cartoons are supposed to be FUNNY, people!!

I’ll be fine.  Seriously.  No need to comment and make me “feel better.”  I just needed to post this because I want all those chronically or terminally or mentally ill ladies out there to know that I understand.  I understand how you feel.  It’s okay to at least want to feel pretty at times like this.  It’s funny because I used to wish the opposite.  I used to hate it when people would see me and say I looked great, when inside my body was in so much pain, when the rosiness of my cheeks was actually my butterfly rash.  I wished that my disease wasn’t “invisible,” that it would show in some way so that I didn’t have to go home and wonder if it was all just in my head.  Sometimes I would leave the puke in the toilet on purpose so that it would prove that I was actually sick.  Proof.  It all comes down to proof.  No one goes on blind faith anymore.  It’s not the “in” thing to do.  And now here I am, the foolish character in the story who gets the wish they thought they wanted.  Ah, poetic justice.  It gets ya every time.