Craniotomy Part 1: How Krang was Invaded and Diagnosed

My tumor has been named, in a manner that I consider to be quite fitting, after Krang from the Ninja Turtles. I only became familiar with this character as an adult, since I never watched the show as a kid. I was struck by what a disgusting and repulsive cartoon character Krang truly is. He is a wrinkly, pink brain with two angry eyes, a twisted mouth, and two nasty tentacles branching out on either side. When he speaks, it sounds like sheet metal being torn in half. He is always plotting evil schemes to take over our world.
And so Krang is now the name of my tumor, as I can easily imagine it plotting and hissing away up in my head (an inside job of sorts).

A Forward by James
On Thursday, Jessica went into Health Sciences Centre for a biopsy. We arrived at the hospital at 5:45 am, when even the worms know they have nothing to fear, because the early birds are still hitting the snooze button.
The procedure began when the surgeon mounted a metal frame on Jessica’s head. It was held in place by four metal pins, each one sharpened to a fine point. At each point, the doctor injected so much freezing that her scalp was bubbling up. As the doctor tightened the pins, the points pressed through her scalp until they connected solidly with her skull beneath.
Sufficed to say, this was neither pleasant for Jessica to endure or for me to watch. However, I was amazed at Jessica’s ability to remained composed, eyes closed, hands folded in her lap. Only once did she draw her breath in sharply, and when she finally spoke, it was just to let the doctor know that some of the freezing was trickling into her eye.
The whole purpose of this contraption being mounted on her skull was to provide the doctors with “frame” of reference (pardon the pun). Because the doctors must insert needles into the brain, they want to have as much accuracy as possible. The frame allows them to pinpoint the location of the insertion to within less than one millimeter.
Once the frame was successfully mounted, Jess went through another MRI scan. She was then wheeled off towards the surgery room, and I went to sit in the waiting room (a place I will become more acquainted with in the future, no doubt).
The surgery went well, and within a few hours, I joined Jess in the step-down room, where she recovered over the next 24 hours. She stayed the night in the hospital so that the hospital staff could monitor her vitals. She also had a EEG test done. This involved hooking up a fistful of wires to her scalp and monitoring the electrical activity in her brain.
The EEG is an interesting test to watch on the screen. It reminds me a bit of watching a seismograph or a polygraph test (neither of which I have actually seen in real life, but abundantly in movies…) Each region of the brain provides a squiggly line with means something to a trained specialist. To me, the untrained un-specialist, it was just interesting to watch all the lines go crazy whenever Jessica did something as simple as move her eyes or blink. This is because the electrical output of the brain spikes during any muscle movement.
The results of this test showed no abnormal signs, other than the obvious presence of a tumour. She was then permitted to go home, where we have been resting up.
And now, without further ado, here is Jessica’s version…

Craniotomy Part 1: How Krang was Invaded and Diagnosed

I Can't Even Imagine...

I have been contacted by many people since I got home last Thursday. It's been good to connect with friends and family that I haven't seen for a year and a half. Of course, they want to know how I'm doing, and to wish me well. After a number of these interactions, I've noticed a recurring phrase. It goes something like this:

"Jessica, let me just say that I can't even imagine what you're going through, but..."

This has given me reason to pause and consider what this expression means. I think that it's something along the lines of, "Jessica, I can't even imagine how frightening and difficult this must be for you. I can't imagine how sad and angry you must feel about this. I can't imagine how disappointed you must be."

Oddly enough, I think they are right -- they can't imagine what I'm going through. However, it's not in any of the ways that they think. What I'm feeling is strange, unexpected, and definitely hard to imagine:

I feel at peace. I feel satisfied. I know that it doesn't make sense, and that I ought to feel all the negative emotions that people assume I must be going through.

Back in my 老家 (Lao Jia)

The title of this post is a very common Chinese phrase. It means that I am back in my "Old Home", the place where I was born and raised. When the Chinese use this phrase however, they often mean it in a sense of returning to your roots, and not necessarily the place where you feel you belong. That is not necessarily to say that I don't feel I belong here. Rather it is to say that it is so sudden and unexpected.

Two weeks ago I fully expected to not be leaving China any time soon. I certainly did not expect that when I left the house on Monday, July 5 to have some Uighur food with our newly arrived visitors on a really hot humid day that I would not be going back. I feel as though I have been evacuated with the clothes on my back. James would argue that most refugees don't have the privilege of dictating to their sister from their hospital bed via cellphone precisely which white ruffled shirt with the yoked collar she wants in her already-bulging suit case. (Believe it or not, my motives were not entirely vain. James kept telling me that we could buy second hand clothes back in Canada, but I knew that I wouldn't really want to buy a new onslaught of clothes when I am well aware of having more than enough clothes in China.)

Nevertheless, the whole packing thing was not ideal and I feel as though most of my life is sitting in a very dear and familiar place on the third floor of a Beijing apartment. I have had to buy jeans already since the weather is much colder in Manitoba than in Beijing. I have found myself wondering why anyone here is using air conditioning at all since I'm even wearing sweaters outside. Why use air conditioning when it is freezing half the year?

The contrast between the things that are obviously missing and the aspects of my lao jia that are dear and familiar makes for a heady combination. There is something missing from the air, but something new as well. Obviously there is no smog, which believe it or not can be somewhat endearing (is this girl unsatisfiable or what?) when mixed with the smell of coal and roasting lamb kabobs and spices. Instead, there is sweet, sweet prairie grass and open clean spaces.

Unfortunately, if I try to write down all of the things here that strike my poor brain with contrasts, I will make all of your poor brains hurt (sorry, I can't resist the urge to make brain jokes now), so I suppose those will have to come out slowly over time. For the time being we will move on to the more official status update of the "pet fungus" that I have been growing over the last while.

If I could, I would put an image of my MRI scan on here. It is interesting for more reasons than one. For one thing you can see my bone structure and profile really clearly and that is interesting. And then of course there is is the Milky Way type object that is located in the three way intersection between my occipital, temporal and parietal lobes. It looks very dense and white in the centre and then swoops artistically off into a myriad of designs and densities at varying points. If my body had to produce one of those, at least it looks kind of pretty. This is a very different "image" than the Chinese doctors were providing us with. Then it sounded like a roughly spherical, dense object, not unlike a UFO that had landed in my brain. The real thing looks very organic, very natural and frankly, very scary.

We have been told that among neurosurgeons there will probably not be any straight consensus on my case. We have had full confidence in the Chinese system. However, we are now in the process of making a transition of doctors and this obviously hard on my body and on my mental state. Ultimately, there are two overall options:

1) Surgery (Total Resection, or "The Option We're NOT Doing")

Some doctors, including the ones we were speaking with in Beijing, feel that total resection of this tumor is best. I would face the possibility of losing some of my faculties (possibly including total loss of vision in my left eye). Unfortunately, the presence of a brain tumor requires that the surgeons balance the pros and cons of every option. Moreover, as I already mentioned, this Milky Way object does not have clearly defined boundaries and essentially goes from being abnormal at the centre to more and more normal at the edges. Not exactly your standard cut-along-the-dotted-line procedure.

2) Medication and Monitoring (The Option We ARE Doing)

To stabilize me in Beijing, I was on a high regimen of medications for a variety of things. Depressants, two types of anti-epilepsy, sleeping meds, steroids, anti-nausea, etc. Now I am on a sort of withdrawal of these meds and being put onto new ones. I am getting better, but the last few days have definitely been ones of dizzyness, nausea and very little mental activity for me.

Anti-epileptic drugs will be part of the "new normal", and will help to prevent another seizure. This coming Thursday (July 22) I will have a biopsy done at Health Sciences Centre in Winnipeg. This procedure involves mounting a temporary frame on my head, using screws which will make contact with the bone (ouch!). I'll be awake for this, which should be fun. They will use this frame to increase the accuracy of the biopsy.

A biopsy, for those who do not know (as I did not), is essentially a way for the doctors to take a sample of brain tissue without needing to make a large cut in the skull. They just drill a hole and insert a needle to withdraw a cluster of cells. They will take several samples from a number of places in my brain.

The doctors will then be able to analyze the tissue and provide us with a clearer understanding of what type of cells are involved (there are lots of cell types in the brain). They can also get a sense of how irregular the cells are, or how much they differ from normal brain cells. This is important, as it lets us know whether the tumor shows signs of being malignant.

There are many unresolved issues at the moment. I am already starting to see some of the effects of decreased abilities. I am not sturdy by myself, I have a hard time spelling and talking sometimes. This is also very scary, and makes me wonder if I will see myself degenerate sharply. This is something I associate with the elderly. James' grandmother was in her 80s when she died last year, following almost half a decade of Alzheimers. During this time, her biggest struggle was during the moments when she became aware of just how much she had degenerated.

The doctors will be able to follow the tumor by doing regular scans of my brain. If it shows any signs of growing, then we will need to reassess the situation at that time and reevaluate the list of pros and cons. This, I think, will be the name of the game for the foreseeable future.

But there is definitely hope. I am very grateful to everyone who has been an encouragement to me and to James. We are very blessed by your kind words and the affection that we've felt from all corners of the world. Thanks to you all.

For now, I'll end here. There may be a few random words between now and next Thursday, but I won't have too much meaningful medical news to report.

Love to you all.

Pictures Part I

As I write, Ari and Jude are flying somewhere over Alaska, far out of the reach of thier mother's love.  Thank God that he is with them and my heart can rest freely for that reason. 

 

Here are some pictures to memorialize our time here in the Beijing medical scene over the past week and a half.  This first picture is of myself and our Aiyi who came to bid me farewell at the hospital today.  I was very touched by her emotion at saying goodbye to us and we spent a good hour or so talking with each other, just woman to woman.  She is so wonderful!

 

The second picture is of Ari with a priceless expression on his face.  I think its summed up pretty nicely in this photo.

 

Tomorrow, I will be bound in thigh high anti-coagulant socks, given shots of subcutaneous blood thinner, accompanied by oxygen, re-intravened with a saline lock, transported twice by ambulance and three times by wheelchair.  Suddenly the apostal Paul's references to our perishable bodies have such a new meaning.  I live in an earthly tent for a short while, but my spirit has a hard time fathoming all the fuss that is going into me.  I guess that all there is to do is to be thankful.