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.