Dr. Frankenstein & The New Frontier

Yes, yes, my friends, it is true.  It was Dr. Frankenstein that led me on my first voyage into the neuroscience frontier.  This Frankenstein however, was female, of German background and interestingly enough, received a degree at the the same university I did.  Dr. Frankenstein has been around this whole time… in fact, she works in the pink buildings across the street from the university.  Life is fabulously strange.  Now for those of you who are only familiar with the more recent representations of Frankenstein, you may be confused since you must think that Frankenstein was the monster and not the man who created him.  In Mary Shelley’s novel, Frankenstein is indeed the doctor, the mad scientist who created without asking the important question of whether he should.  One of my most favourite places in the world is the place where Shelley wrote that novel, the mysterious and beautiful city of Montreux, Switzerland.  I remember walking in the rainy mist along the lake waiting for my hostel to open and thinking, “wow, I totally understand why that story came out of this place.”  I don’t know quite why I thought that, but I digress… sentimental backpacker reflections do not belong here. Although I think that she was doing drugs at the same time, so perhaps I can’t give Montreux all the credit…

“The Brain and Pain.”  I found myself thinking about how silly it was that I am a person who experiences pain on a high level everyday and yet I never ever thought about understanding pain itself.  I just accepted it was there.  It’s part of life, part of the way my body functions, so why even waste the energy on finding out more.  I thought, pain is subjective anyway, it cannot be measured into one sensation and the emotional components make it even more complicated… it just seemed like a useless task.  Oh, human beings and the ignorant bliss they love to keep warm in.  

I won’t bore you with all the technical stuff, but basically pain is a “multi-modal network,” which means that you cannot trace it back to just one part of the brain.  It’s everywhere, baby, it goes and comes from everywhere.  And just to make things more confusing, it even happens when there is no pain source.  There is this chunk of grey matter in the mid-brain that plays an important part in pain control.  Apparently, scientists discovered that if they stimulated that part of the brain during surgery, anesthetic was not required!   This surgery was on a rat, mind you, but still, that’s pretty incredible.  As a side note, I found it very interesting that a cross section of a spinal cord is a butterfly shape… it is also the symbol of Lupus organizations and the rash on my face bears the same name.

Dr. F talked about the different ways of pain control, most of which will not surprise you:  Distraction, Medication, Acupuncture, Meditation and the last resort if nothing works, Neurostimulation.  She shared with us very interesting studies on distraction techniques and about this virtual reality snow world video game that burn victims play when they need to get their bandages removed and changed.  Studies show that those who played the game had significantly lower pain ratings than those who didn’t.  The study also compared playing the virtual reality game to just playing nintendo and it didn’t even compare at all.  The nintendo did very little in decreasing the pain ratings of patients.  Did the virtual reality part of the game make a difference?  Was it that it was a snow world and that the “coldness” helped to counteract the “burn” of their burns?  Psychology and science and technology at it’s best?  Well, it is fascinating at the very least.  

I found the acupuncture portion particularly interesting because I have had two treatments already and I am under the belief that it has helped me greatly.  I feel less agitated and I am finally able to nap more than 10 minutes.  I stay in bed and relax and even snooze till 12 noon sometimes, which is a huge change.  The hyperness caused by my steroids usually has me out of bed right away, literally jumping out of my bed to start my 20 hour days.  My steroid dose was lowered by 10 mg before my last chemo but I am still on a very high dose.  It could not have caused this big of a change.  I mean, my moon face is still expanding and I am growing peach fuzz on my forehead.  What more can I say?  Anyway, studies show that there is an added element to the effectiveness of acupuncture – the power of positive expectations.  Those who had low expectations did not benefit as much as those who did.  They also did this study with a “fake acupuncture” and there was no benefit to either group which means that the acupuncture itself was shown as a valid medical practice.  Well, Chinese medicine is all about positive “chi,” right?  So, if you have negative chi then of course you won’t benefit as much.  Isn’t that the way with everything in life anyhow?  You know, the whole “self-fulfilling prophecy” thing?  If you think it’s going to suck, it will.  So simple, right?  And I am sure this study has made some of you roll your eyes and say, “Oh God, here’s that “power of positive thinking” thing again.  Give me a freaking break!”  Sure, it’s warm and fuzzy and cliche, but I don’t know people… I am starting to think that we have more control over things in our lives than we think… why not our bodies too?

I think that the meditation pain control technique is the most powerful of all.  Studies done with “expert meditators” and “amateur meditators” show without a doubt that meditation not only increases a person’s pain threshold, but also lowers pain ratings consistently.  During the study, the amateur meditators were eventually able to maintain levels close to the experts.  We do have the power within us, the strength within us to heal from within.  It’s just too bad we live in a world where the “easy way” has the rule of the land and discipline has been associated with a hard life devoid of fun and happiness.  I won’t go into the last way of pain control, the one that you can resort to if 1 – 4 doesn’t work, because we all know what that’s all about, getting some machine to do the work for you.  We usually go straight to number five anyway… I mean, who has time to actually try those things anyway?  Isn’t meditation a life long practice kind of thing?  Forget it, right?  Right.

I won’t talk about meds either.  That’s pretty self-explanatory.  And I know that if I talk about it I will start a rant about how absolutely horrible steroids are and how my fuzzy forehead makes me feel like Michael J. Fox in that 80’s movie, “Teen Wolf” or how I am already thinking of ways to cover up the appearance of a steroidal humpback should it appear or that the blood clots in my hand actually make me very nervous and I hate that they happen to be in a spot that ensures that I see them constantly all day.  See?  That was totally the rant I was talking about.

I had a chance to talk to the professor who set up these sessions and he kindly took the time to listen to my situation.  I asked him why my scans didn’t show anything and he said he believed that my situation is more complex and that just as pain is multi-modal, he believes that the damage in my brain is wide spread and more “fibre” based.  Dr. F is part of the research team that is creating these amazing magnetic x rays that have the capability to detect the complexities of conditions like mine… and it’s all happening right here in Winnipeg.  Again, I must say, who would have known?  I was in a building where there are magnets a billion times more powerful than that of the magnetic pull of the Earth.  

And yet, as I marveled at the ingenuity of man, I felt a nagging pull deep down in the pit of my stomach.  It was the very same feeling I had as a child watching Jurassic Park for the first time, discovering in horror what happens when mankind struts arrogantly in the face of nature.  It is the same with our dear Dr. Frankenstein, Mary Shelley’s tortured scientist.  Can we really be sure that our best intentions are just that?  Is that our fatal flaw, our arrogance in the fact that we can, our blatant disregard for whether we should?  Should we even try to battle nature and the diseases that she has chosen in order to somehow regain balance on this dying Earth?  I need to find out more about the  ethics around this whole thing.  For some reason, I feel like stem cell research could be the key in curing auto-immune diseases like Lupus, but I don’t know enough about it to make a comment on it ethically or scientifically.  It is my hope that one day our medical system and society will be one that is preventative and holistic in it’s essence and that the reactive battle that we are waging will have a smaller part to play… but I am a dreamer, my friends.  An idealist dreamer with a screwed up brain.  Who would ever listen to me?

The Face vs. The Box of “Crazy”

Everyone has a skeleton in their closet.  Mine is a box.  A box full of “crazy.”  

When I first came home from the hospital, I wrote everything down, mostly because I was afraid I was going to forget what I was thinking a moment later.  I wrote every detail of my day in my symptom journal: Hours slept, mood ratings (self-assessment and my parents’), meals, snacks, attempts at naps, activities, etc.  I kept a small notebook in my purse to write down worthy “quote moments” literally seconds after the person said it, I’d even write out whole conversations like I was writing a play.  I’d write down everything in point-form, dozens of intricate puzzles that needed decoding, like the ones that Ben Affleck’s character left himself in the movie “Memento.”  I’d take pictures of signs and random things with my cell phone. This one day I took over 200 pictures with my digital camera of items around my house because I believed that everything in my childhood home had a “message” for me.  

Apparently I thought it was important to take this one...

Self-portrait (two weeks after release from hospital)


I even used my digital camera to record myself in a manic state… I even thought I was going to send it to Oprah.  I wrote post-it notes constantly and put them everywhere: in between books, on shelves, on my closet, on my walls, in my wallet.  I’d find things that I believed were “messages” and put them on display like trophies.  Eventually my room looked like… well, it looked crazy… like the person living in it was definitely CRAZY.

Two and a half weeks ago, I came home (after getting into a minor car accident, actually) and I put it all in a box.  All of it.  I ripped all the post-its off the wall, grabbed all my journals and writings  and creepy messages from during my time in the hospital and after, all the books and magazines I bought because I thought they  were “calling out to me,” I even put my keys in there.  I don’t know why I did the last thing… I’ve been confused about where they’ve been this whole time.  I just dumped it all in there, closed the flaps, closed my closet doors and sat there for hours, on the floor, leaning against my bed… staring at it… the skeleton in my closet.  My own personal box of “crazy.”  I decided that night that I wasn’t going to write everything down anymore.  I decided that it was time to trust that I can remember things on my own.  That was a scary decision.  I don’t think I truly believed that I could do it… I felt like I had lost so much of what had happened to me already…

The other night I decided it was time to face the box of crazy.  It’s the only way I am going to get through this.  I need to face reality.  I can’t keep pretending that I’m different characters in my favourite stories, battling imaginary devils and demons. This is real life.  This is MY LIFE.  I need to get my life back.  The things in that box represent all the illusions I have to wade through, all the tricks and booby traps of my brain.  I need to know them, I need to decode them, I need to understand them.  I can’t just put them away like they don’t exist.  I opened the closet and for a good twenty minutes it was just me and the box.  Standoff (cue tumbleweed), both of us unmoving, just waiting, staring, wondering… will she do it?  Suddenly, I leapt forward and emptied it as quickly as I had filled it, ripping it open like I’d rip off a band-aid, eyes half closed from the effort… but I did it.  I emptied it.  I laid out all the brain books and magazines and clippings and info on Lupus on my desk, ready for reading.  I put all the books that “told me to buy them” boldly on the shelves, stored all the creepy messages in plastic inserts ready for further investigation, I put my journals on my bedside table.  Ok fine, I did take a small break in between.  I had to.  Oh, I guess I didn’t mention that while I was doing this, I almost gave myself a panic attack.  My heart was beating so fast and every time I would bring out a new item it would quicken and I would sweat and I couldn’t breathe.  It was all the craziness, I guess.  Each item was crazier than the next, more surprising and more disturbing than the next… and all of it, ALL OF IT, was ME.  I did that.  I bought that.  I thought that.  Yah.  I needed a little break.  They weren’t kidding when they said that facing the truth, facing yourself is the hardest thing you will ever do.  I just never thought I’d be this scary looking.

The box is still in the closet, but it’s not entirely empty.  When I filled it with craziness that night two and a half weeks ago, it was already storing framed pictures of my past life on the stage; my very first headshot, me getting married as Tzeitel in “Fiddler on the Roof” in Grade 12, me on stage during my fourth year honours play during my last year of university.  Is this the hope that Pandora kept safe in her box?  Perhaps.  We need to get Elena “uncrazy” first.

I have demanded that I see a mental health professional as soon as possible.  I have been asking for one ever since I left the hospital.  I’ve been playing phone tag with the doctor’s office receptionist, but the wheels are in motion.  There’s the hope, I think.  I can’t do this all by myself anymore.  I am a brave warrior woman, it is true, but the brain is dark and deceptive terrain.   It’s time to get myself a guide.

Here’s a quick update on the physical state of your favourite lab rat:

I’ve had 15 vials of blood taken in the last week.  Blood test results look good.  White blood cell count normal after second cycle of chemo, hemoglobin a little low (but apparently that is normal for a lupie so no real concern), kidneys doing a-ok despite cocktail of daily drugs (they almost shut down two years ago, so I marvel at their steely magnificence!).  Steroid dose is still very high, but is down from 60 mg a day to 50 mg (the goal is to go down to 5 mg, I think) and moon face continues to expand.  Thrush (mouth fungus) comes and goes, but still has a grody presence.  Continued hair loss.  Analyzed my forehead and discovered there is new hair growth there, apparently another side effect of the steroids.  Sigh.  Forehead fuzz.  Great.  Found two blood clots in two veins in my left hand.  The internet says it is “lupus anticoagulant,” which isn’t too much of a big deal except that it hurts (got more blood drawn for futher investigation) but it will increase my chances of miscarriage… ya know, if the chemo doesn’t fry my ovaries first.  I’ve been put on birth control again to try to protect them.  I stopped taking it two years ago after my anaphylactic shock because I wanted to cut down on the meds in my body and for the fact that increased levels of estrogen is proven to increase lupus flares in women.  I was not happy to hear that I had to take them again, especially since I was so excited to tell her that I actually got my period after not having it for three months (most likely from not eating for two months prior to my hospital stay), but the look of concern and seriousness in Dr. H’s face swayed me in the end.  “Actually, I’d prefer that your ovaries weren’t active right now.  We need to put them to sleep.”  She was like a warrior… a warrior for my ovaries.  I like that.  It’s nice to have one.  Tomorrow I have another appointment at the “lab” where I had my chemo. I am not sure what they are going to do to me in that one – I only just gave blood again today.  My third cycle of chemo is on the 15th and then I have a follow-up appointment for my eyes to see if the vision is improving and acupuncture and hopefully future appointments with a psychologist … well, I told my mom we have too many appointments and that we need a vacation from this weird “vacation” that I’m having.  Hawaii, anyone?