Same girl, less prednisone, more hope.
Same girl, less prednisone, more hope.
Okay, not really, but I was touched by how little effort it took to lose an entire hour of my life. Our electronic devices remember to do it for us – turn it back, “spring it forward” – manipulating our concept of time with one mindless, automated click. We even talk on the phone with people in different time zones, sharing a joke with someone “now,” who is technically laughing with you tomorrow morning. It’s all a little bit fucked up.
Almost three months ago, I wrote a blog post announcing my desire and commitment to moving forward… with my runners on. During the last 11 weeks, I’ve been going to the gym 2 – 3 times a week, with the exception of one week when I felt exceptionally shitty and only went once. My Prednisone marshmallow suit is resisting complete annihilation, but my leg muscles are now nice enough to let me run ten minutes straight before slowing down for a rest. I am hardly hard core, people – I run only at the pace at which my pissy, little body will allow me. I listen carefully to every tinge of pain; a tender ankle, an achy knee. I navigate my way out of a dizzy haze with rest and pep-talks. I don’t run every time I go to the gym, I space it out, trying not to overwhelm my joints despite their mostly pain-free status. I know better than to let that fool me. I’m running, but I’m taking it slow. Go figure.
This is the longest period of time I have ever been committed to the gym and although Prednisone’s amazing marshmallowy effects can still get me down, I know that my efforts at the gym have nothing to do with it’s continuing presence. “Moon Face and Friends” will only disappear with those lovely, little white pills. I will have to wait till my April appointment in order to see if the Big M is a worthy opponent for the auto-immune wolf growling inside of me. If so, Evil P can get the hell outta here and the outer normalcy I wish for will finally come to be.
Perhaps it’s silly to think that when I look like the person I was, I’ll be able to be the person I am? Am I waiting for an imaginary “me,” the way people run after time; sweat pouring, chest heaving, trying to catch up. Could it be that this slightly marshmallowy version of myself isn’t a lesser version at all?
“Enjoy it while it lasts!” One of my keepers exclaimed. Be satisfied now. Redefine “normal.” Shine your moonlight puff-tasticness all over the whole damn place.
Just run with it, baby. Just run.
I take 13 pills a day everyday except Saturday. On Saturdays I take 14 pills. I (try very hard to) wake up at 8:30 am so that I can eat at 9 am, which is the deadline in which I have to take other pills that need to be taken with food. According to Pill #14’s prescription instructions, I must remain “upright” half an hour before eating and half an hour afterwards. And every Saturday, as I feel the pill slip slide it’s way down the back of my tongue, I wonder: What will happen if I give Pill #14 a horizontal F you? What if I pass out, get knocked out, tired out and I must lie down, that there is no choice? My inner camera zooms in and my imagination musters up words like “fermenting bubbles” and images of cartoon organs with sad, pouty faces. Although, I don’t think I need to lie down in defiance of Pill #14 in order for my inner body to look like that. I’m pretty sure it already does. After hearing how long I have been on Evil P and all the rest of my “pill pals,” I was recently told, “wow, what a terrible thing to put your body through.” My cartoon liver yells out, “um, understatement!!” I’m now taking three of the new pills, Imuran, a day. No noticeable side effects so far. The toxic wheel keeps churning and I’m feeling pretty good by Lupie standards. My body has been enjoying the luxury of sleeping whenever it wants or needs to, so we will see what happens when I start working again. My brain seems to be functioning normally and all that has happened is a dream long past. It really is over. It may happen again someday, but for now it’s done. That stuff isn’t part of my world anymore.
While I was sipping a well-deserved steeped tea from Tim Horton’s after braving the Christmas crowds at the mall, my parents caught the eye of a family friend. She paused amidst the flow of people, waving at my parents’ smiling faces and then to me. She held her eyes on me as she weaved her way towards us, extending her arm towards my face as she drew nearer. She paused, looked at my parents and then to me. I drew in a deep breath in preparation. She looked at my mom and said in Tagalog, “she’s fat now.” I jumped in immediately, mumbling something like, “it’s because of my medication, blah, blah, blah…” My face burned as I slapped on my “robo-smile” and disengaged from the conversation. She didn’t mean it in a malicious way, of course. I remember several “fat comments” from family friends of the older generation, especially one that resulted in my deeply insecure teenage self breaking out in tears and heading for the hills. I wasn’t fat then and I’m not now. I know that. I know she said that because the last time she saw me was at my sister’s baby shower, when I had only been out of the hospital for a few weeks, was most likely around 100 pounds and Evil P’s side effects had not yet kicked in. Since then I’ve gained about 20 pounds and a moon face. She was just stating that I’m fatter, which is absolutely true. Nonetheless, the heat in my moon cheeks kept me warm on the walk to the car.
My point? Well, I’m pretty sure I won’t be off the evils of prednisone for at least another two to three months and I am going back to work in the New Year, so the importance of “embracing the moon face” has come to it’s critical hour. Today’s events reminded me that I will be seeing a lot more people day to day, so I need to start preparing myself and pumping myself up for it. The insecure teenager that headed for the hills is pretty much the same woman who wanted to drown herself in her steeped tea this afternoon, so fully embracing the moon face while encountering other faces who have not seen me since I lost my regular face is of the utmost importance. This will most likely involve maintaining eye contact and not running away when I see someone I know. Should be easy, right? All I know is that robo-smiles and disengagement may be the norm in other workplaces but it will not work in mine.
My mom loves kissing my moon cheeks. She smiles and says it’s like kissing my newborn nephew. I enjoy the comparison. He’s pretty cute.
So if you can, spare me a moon hug. I am building a forcefield of moon hugs to help protect me from all the nasty things my insecure mind has to say because it’s clearly the only one who even cares that I have a moon face. Hardly anyone notices and 100% of everyone doesn’t really give a shit. Funny how that works. And you know what? Deep inside I know I don’t really give a shit either which is why this is all quite irritating.
After the family friend dissolved back into the mass of Christmas shoppers, my mom looked at me and said, “you handled that very well.” Good. That’s good, right? Now we’re getting somewhere.
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.