I found out today that I am 5’2”. My driver’s license says 5’3”. Well, at least that mystery is solved.
I have not puked and I don’t think I will. Yah, yah, I know. Now I feel like a nob. A silly little nob. I get all worked up and then everything turns out fine. That happens to me a lot… but that’s okay. I think it’s good for me to be reminded that I am a silly little nob. It keeps me grounded.
Ok, so, Lupus Cerebritis. I know you want to know more. But first I must address my last sentence in my last post regarding the fact that “the lab rat is prepped and the trials are about to begin.” A concerned relative emailed me to ask if this meant I am undergoing experimental drug therapies or trials. My apologies, my friends, my love of metaphors and melodrama took me over. I just wanted the ending to have impact, ya know? I am following doctor’s orders to the letter and have no plans to do any experimenting of my own beyond learning to play chess to improve my cognition. Although I must admit that if offered a chance to have my head cut open in order to actually SEE this invisible inflammation in my brain I would absolutely take it. The great thing about inflammation is that humans have not yet discovered a way to detect it without cutting you open, so we all have to go on blind faith (and scientific “fact”) that it’s actually there. And believe me, I know that it’s there, because my symptoms are incapable of lying. Literally. I imagine myself lying on the table, eyes open, like in that old commercial about seizures (sorry, my dear Americans and younger Canadians, you won’t understand this one), listening as the doctor pokes and prods certain areas of the brain. I don’t think I’ll be smelling burnt toast though. The armpits of those closest to me are surely sweating at the moment because they know that I am dead serious. Don’t worry James, no one has asked me… yet.
I started to write a letter to my lovely rheumatologist (we’ll call her Dr. H), while the drip drip of the chemo seeped into my veins. I wasn’t sure if I would see her you see, and I had some things I wanted to say. She did end up coming and I said it all in person (crying intermittently, of course), so the letter has stayed in my hands. This is a most convenient thing, since the letter explains much of what I was going post here. I am sure she would not mind if I shared it with you. I don’t know her very well, but I have feeling that she wouldn’t. She is quite lovely that way.
Dear Dr. H,
Firstly I must thank you for the sincerity and care in which you do your job. For the first time since my diagnosis, I feel like I am getting good care by someone who truly cares about my well-being. Thank you does not do justice to the feelings I have in my heart.
As you know, I have completed my 2nd cycle of chemo today as part of my treatment in hopefully eradicating this thing called Lupus Cerebritis. You will not be surprised to know that the chemo from my 1st cycle has not yet had effect on the bipolar-like symptoms that has enslaved me and yes, I am still a prisoner now as I was when you watched me scream and run in horror from my mother’s touch and into the hall where you all stood over me in shock. The only difference is that I have learned to control it. At times I do better than others, but the strength and velocity of the emotions that want to spring out of me is the same. It is hard work, I must admit, especially in light of the fact that the steroids don’t let me sleep very much these days, so the energy I have to draw upon is usually small and very quickly diminishes.
I have been observing myself very carefully these last few weeks and I think that I have unravelled some of the mystery of where and how this invisible inflammation is affecting me. My cognitive function has thankfully improved – I am sure you remember me telling you that I was having trouble communicating both orally and written. I know you do not know me personally right now, but if you did you would know that my communication skills are my greatest strength and gives me the most joy, for I am a performer and storyteller to the very core of my being. The fact that my words were stalling as I spoke, that I would find myself writing the wrong word, that reading aloud I would do the same thing… well, you might as well say that I could not speak nor laugh again. I did some research and found that most people who have suffered through Lupus Cerebritis never fully regain their cognitive function. For me that is not an option, so I have been doing all I can to exercise that part of my brain: Writing, reading (silently and out loud), learning language, puzzles, singing, everything. And I am happy to report that my writing and reading skills are now back up to par, if not more than they were before. Orally I am fine too, but it does take much effort to control myself in my moments of “chipperness” (that is what I call it when the talkative, 10 year old Elena comes out – you must remember her quite clearly from my many days in the hospital). Actually, it’s pretty exhausting trying to hold back the tsunami of words and stories that she wants to tell. Sigh. Well, I guess that makes sense… I am a storyteller afterall.
In the hospital I was forgetting the people closest to me, something that I could never have perceived as possible, but the brain is a truly powerful and formidable enemy when it chooses to be. I believe, without a doubt, that if I were not in my childhood home, surrounded by pictures and reminders of those most important to me, I would not know who they are. I flip through pictures of my short time living in Toronto; snapshots of moments of laughter and joy with people who’s names I only know because I conscientiously scribbled their first names on the back more than 8 years ago. I can’t explain to you the profound sadness this gives me, to forget the important characters of my life, the people who made me who I am. And I know that memory itself can be a funny thing and that we sometimes choose to forget or choose to recreate our memories. I know that naturally I am a forgetful creature whose focus and enjoyment of the current moment results in the loss of the joyous moment that had just passed before. I know this, but I also (oh, I just had a little written communication blip with that last word) know that when presented with my loved ones in touchable flesh and blood, when I am able to stand and gaze into their eyes and feel the familiarity of their gaze, I have never forgotten them. This is why I know without a doubt that the chemo is not working that this is the work of that invisible, undetectable inflammation that we have no choice but to believe that it is there. I am currently reading up on this mystery called memory and it will be the next thing that I will be working on. You of course understand why I had to deal with the cognition stuff first.
Now, I haven’t yet had the energy to really look into the part of the brain that causes bipolar hypermania, but I am sure that you, nor I, nor anyone else who participated in my care at the hospital or my poor parents who watch me daily with sad eyes, can deny that whatever part of the brain that may be, it is most definitely inflammed. Inflammed and enraged, I’d say. I think I just spelled that wrong. One “m,” right? I’ve also been displaying signs of Obsessive Compulsive Disorder from time to time, but I’ve been able to keep that in check quite easily most of the time. The other times I just sit back and enjoy the tidiness that does not come to me naturally.
Then she walked in the door. The happiness I felt in my heart in seeing her swelled so intensely that it took all my strength not to jump up and hug her. Good thing I kept things in check… I would have ripped my IV right out of my arm.
I think that is enough for tonight, my dears. Although there is no pukage, I am feeling very fatigued and I still have to respond to the lovely messages that have littered my inboxes from friends, family and beautiful strangers alike. Next post we will discuss some of the fascinating things that happened during my hospital stay, as well as my treatment plan and perhaps we will even get to the visual disturbances that are occurring as well. Till then, sleep tight. All is well.