Sunday, October 30, 2011

Does Anybody Really Know What Time It Is?

November 18th will be my brain tumor party. The day I get anesthetized, brain tumor removed and titanium snowflakes in the end. So, that's that. I argued for an earlier date, but in the end found myself begging for the doctor to confirm, at least, November 18th, so that I could plan my life. Then while I was waiting and waiting, it occurred to me that part of my control freakishness is an addiction to feeling I can plan the if...and the reason I know this is an addiction is that when they finally called and said that this would be the date and gave me enough information to make me feel like it was real, I felt the serotonin wash through my system. I felt relieved, and it wasn't even what I really wanted.

What is it with us that we are so concerned with what we're going to do tomorrow? What is it with the calendars and clocks and alarms and blocked out meetings and pick-up times for the carpools? I'm reminded of the lyrics from a favorite Chicago song, "Does anyone really know what time it is/Does anybody really care?" Oh, yes, we care. Let me correct that, I care. So, now I have three weeks that I can plan to the enth degree and busily I set about doing just that in my brain first and then on the calendar. Then I hit the wall.

After three weeks, I have a vague idea of the first three to five days of what will happen, and after that...phew...I have no clue. It all depends. It depends on how well the surgery goes. It depends on how my brain reacts to not having this gray egg pushing at it. It depends on the closure. It depends on whether there is any tumor left in the cavity. It depends on technology and the talents of the busy surgeon. It depends on things I seem not to have control of...

So that immediately informs me...what can I have control of? Har. I can control my attitude maybe, but my emotions are having their way with me. I was confident four weeks ago when this thing was discovered that it would be removed and all would be well, but all this time has passed giving me far too much time to contemplate less favorable results, and to be honest, that really is not where I need to go with my contemplation. Then I happen to watch movies where people die, or are chronically ill because there suddenly seem to be a plethora of those stories, and it becomes really scary. Then it becomes obvious. I have to spend the next three weeks cut off from media and well-intended conversations that emphasize the tragedy of finding out one is not perfectly healthy. In fact, I must do everything in my power not to write negatively about this brain thing.

What I'm conscious of is that when I had my miscarriage and lost my womb, I was immediately willing to go into the depths of my sadness about it. It feels like that was harder. It feels like this experience is more technological and mechanical and that it will turn out fine. Then it doesn't. Then it feels like this long delay must be the Universe asking me to take the time to say good-bye to life as I know it. Why else? I mean it's the night before Halloween and that's the scariest thing I can think of having to go through, and here I am going through it. Boo. How do I climb out of that?

My theory is that the only way past these feelings is through them. Coincidentally, I'm working to finish up a project I started in August. I'm writing a poem for each Tarot card in my own Kosmic Egg Tarot Project. It felt like I needed to complete something, and this was accessible. So, I'm writing the last fifteen poems this week. I've been writing the Minor Arcana suit poems, four a day (nearly) for a couple of weeks, and likely I will need to edit them quite a bit, but I'm happy with my "Nines" and wanted to share one them in this post because I feel like it partially encapsulates exactly where I am with my life right now.

To increase your understanding of the system of Tarot, let me just say that the "Nines" specifically represent the "realization" of each suit, sort of the best and worst of it as a big "aha". The Minor Arcana represent, for me, habits and are thus very mutable, and each suit represents a sort of path that we may be on for a period of time...material, emotional, mental and spiritual...textiles, vessels, tools and light. I will post the other "Nine" poems in separate posts...Here is the first:

Nine of Textiles

Those moments of self-realization create
Sustainability through the expertise I
Bring to the fabric of life. There was a
Time when I could not have survived
The challenges of this moment, but now
I am wrapped in warmth that I sewed
Myself and I can enjoy these conditions
That others would find a challenge.
The Aurora Borealis provides the
Unfathomable vision and my wolf is now a
Faithful companion, who assists my
Daily work to thrive, no matter what the
Appearances and circumstances are
Because I know I can adapt to change.

copyright (c) 2011 Amanda Morris Johnson

Thursday, October 27, 2011

Titanium Snowflakes

It's pretty cool what they do...maybe not "Spock's Brain" cool...but pretty amazing in its own way. So, yes, they are going to saw through my very thick skull and they are going to take that piece of my skull and let it sit in some kind of solution for the four to eight hours (yes 4-8) that I'm in surgery. However, before they get to that point they are going to take a detailed MRI of my whole brain and send it to a GPS satellite that will somehow have a GPS connection to my surgeon's knife. How cool is that? That image will guide the surgeon via flatscreen HD (3D???) television in through the hole in my head. Just to be more graphic and gross, since it is nearly Halloween, it is the space just above my left ear, about 2 inches in diameter. 

Then they're going to sliced and dice the tumor very slowly and carefully, and pull it out in slices like slices of an egg. Once they get some of it, they immediately send it off to have it tested (but the lab is much slower than the knife - 2 weeks to know if this tumor is actually benign for sure). So, the surgeon must be going super duper slow and careful so as not to knick the brain in anyway. Must have the patience of a Saint! Any of the tumor that is reaching into tough spots to reach is likely going to stay there, but so far it looks like it is going to be easy to remove. 

The tumor is outside of the brain lining, and inside of the skull, taking up space. It is pressing against specifically the region of the brain that controls some of my language skills, my hearing, and my right hand -- otherwise known as the left temporal lobe. They expect that recovery from this surgery will be something like recovering from a mild stroke, so I hope you'll be patient with me. You'll see in the image below that this thing is pressing up against my storytelling and memories and that's kind of disturbing to a writer. It could be anywhere between 3 weeks and 6 months before I'm up and running. It's likely that the space left open will fill up with the fluid that surrounds our brains and runs up and down our spinal cord, and that my brain will stay just as it is. 

So you may wonder, why not just leave be? I did. I hear the risk of seizure has gone up exponentially because of my ten minutes of aphasia at the beginning of the month. And, after surgery for the first month I run the risk of seizure a lot higher so I will have to take it slow and take these medications which are like two margaritas in the system all the time. There may be improvements like: no more headaches, vanished hearing problem, and clarity. That's my hope. However, they are ever cautious and make no gleeful promises. Really wish they were more positive about a number of things besides, "this should be removed," but I suppose this is the result of a litigious society. 

Oh, and then when they're all finished, the titanium snowflakes! They fill the space up with a saline solution that will be absorbed by my body, and replaced by that fluid I wrote about up there, and then they stitch up the lining. Then they put the piece of skull back on, and they go around the edges and put little titanium snowflakes to seal it with titanium screws. Apparently, I will not set off Homeland Security detection devises with these titanium snowflakes but they will be with my bones for all time until I am dust and they will just be a pile of mysterious titanium screws and snowflakes. They could be golden or bluish not than anyone will see them because then they pull the skin back up and staple it together (such a sloppy ending don't you think?). I will have a partially shaved head, and some wicked scars. 

Hopefully, that will be the gist of it. However, if there is some tumor left in there I will have to undergo radiation. Then I will be really pretty. OMG. They couldn't have managed this BEFORE Halloween. I would have been the best Zombie Mom ever!

Wednesday, October 19, 2011

Head Long into Health

Two weeks ago I landed in the hospital because, I the writer and communicator, spent a good long ten minutes speaking in gibberish. I could not get the words from my head to my mouth in any way that made sense, and I knew it. It was embarrassing because my husband and I were at a party meeting and greeting his new colleagues in a new job. I was supposed to be playing "supportive wife" role. There I was saying something like, "The beer snake flew smash nut Pho dog food," when I was trying to describe a simple place. I thought I was having a stroke, or had finally gotten full-blown Alzheimer's disease.

It went away, but I was stunned and the next morning after much delay, I decided I had just better head over to the hospital to make sure I wasn't building up to a bigger stroke. You may wonder why I didn't go straight to the hospital in the first place. That's probably why I'm writing this blog because it is a warning to take symptoms seriously, take oneself seriously and, you know, take care of business for oneself when it comes down to it. 

Those who have known me long will know that I'm the person who has the strangest, least explainable illnesses.  For instance, for years I was covered head-to-toe with chronic hives, red itchy welts all the time (and I do mean all the time) for years on end. After initial panic about these kinds of things I grew used to having things wrong, made jokes about them, tried a gazillion diets, supplements and medications all to no avail. In fact, I simply made myself used to my body glitches. I've had a gray, dirty-laundry-in-my-head headache for so long that I've written it off as par for the course, part of my life here on planet earth. I've longed for the invention of a brain rinse. I've got a patchoulus eustation tube that sounds like I'm underwater on the left side of my head all the time. I'm fatigued a lot of the time and have aches and pains that are not explicable by my Hashimoto's Thyroiditis (who has a disease like that?) killing off my entire thyroid and leaving anti-bodies swimming through my blood. So, you know, with all these little things going on all the time, I've gotten a sort attitude about not feeling well that goes like, "Yeah. Big deal. Another thing."

It turns out there is a reason for all of this. I have a brain tumor. After sending me through an MRI at the hospital the Doctor arrived in my little waiting room breathless to announce, "It's benign, but you need to take an ambulance to St. Anthony's right now and have an operation."  Huh? So, it wasn't a stroke or Alzheimer's. He shot me up with some steroids and the friendly ambulance guys got me off one gurney and onto another lickety split. Brain surgery. I talked all the way down. I felt so relieved to have a clear answer, a removable answer. The whole thing was strange.

Because I was so chitty-chatty everything slowed down. I looked nothing like I was in the emergency of my life, I suppose. I had time to send out emails on my Droid. "Hi guys, just letting you know...I have a brain tumor." They came in and asked me to touch my nose and follow the light and say things. Nope. No gibberish. Everything slowed down. They hooked me up to machines. They took my blood. They came and looked at me some more. They sent me through a CAT scan and an EEG. They threw up the MRI images and there was the rather large grey egg sitting on the outside of my brain, and inside my skull, an intruder causing swelling, but not reaching into the grey matter of my brain apparently, and they decided that surgery could wait for a more elective time.

I went home on day three loaded up with pharmaceuticals that were supposed to keep everything under control and shrink the tumor so that it can be easily removed. Unfortunately, now it has been two weeks of relatively very little sleep, and I've got two to three weeks to go before they actually remove this slug of my past. I feel I might be going mad as a hatter. My hands feel tied. 

Then tonight, after two restless hours of tossing and turning I got up to address the thirst and wakefulness by cleaning my kitchen again, and it occurred to me that I'm having a temper tantrum and a whine fest in spite of my best efforts to be courageous and cool about this whole thing. During all of those years of mysterious illness, maybe it always came down to this lump in my head, and what did it all mean? I'm in a state of self-examination again, but this time loaded with some strange ray of hope that it isn't my imagination finally. Yet, my arms are folded in anger. All those years! Taking care of myself on those gazillion diets, supplements and endless treatments! I'm sure I sent someone's kid to college once or twice. 

The thing is on my communication center. For the last several years I have been struggling with words, with phrases on the tip of my tongue disappearing before I could spit them out. I have been struggling with timing. I have been feeling I'm losing my mind's accuracy and clarity. Obviously, my brain has been working overtime to compensate, and now what? What happens when it is no longer there? Will I be able to write at all? Will I be better? These are the great unknowns of the moment. Where is Dr. McCoy and the brain operating machine for "Spock's Brain," when you need him? Not that I'm Spock, but I'm just saying'!

I expect this sounds like a tragedy to some of you, but I feel blessed on many levels. I am finally insured and can take care of this, thanks to my lovely husband. I have a clear prognosis, since it is outside my brain, and even if I have to have some radiation to stop any growth that looks messy the neurosurgeon feels he's not going to be cutting brain matter with any scalpel. That makes sense to me. Apparently, they put little silicone donuts on my head and get a GPS satellite image and cut a little incision and remove it like a gallbladder. So, maybe I don't have Bones, but things have improved in the science and execution of it. 

The main thing is that now I have to get over my tantrum about it and start taking care of myself again because what I'm aware of acutely is that somewhere along the line of the last few years I gave up hope of ever really feeling that good again. I'm beside myself, that actually, I might just feel a helluva lot better soon.

That's my news of the moment. I'll be updating here from time to time, just to let you know how it goes. I was going to do a CaringBridge site, but their server moves to slow and I'm too impatient. I welcome your prayers and thoughts, good vibes and light, but please don't expect a lot of personal messaging about this because after just two weeks I'm at maximum capacity for explaining it in more detail. I hope that doesn't sound awful, but this blog will serve as the curation of information for me. Trust that I'm addressing my needs to the very best of my abilities and using this, as every opportunity, to write and examine life. Who knows? Maybe I'll be more brilliant. Grin.