July 30, 2010

The Island Clause

James here. Anyone familiar with my hairline will know that it is becoming increasingly easy for my scalp to "breathe". Plenty of sunshine makes its way through the ever-thinning canopy of my once-thick locks.

Baldness is hereditary, and I received a bit of a double portion. My father sports the "Apostle Paul" look, with a wrap-around swath of hair clinging to the latter portions of his head. It suits him, especially with his silver beard streaked with black. The best word to describe his look is sagely.

My mother's side of the family has thin hair. I mean this both in the sense of folicles per square inch, and in the sense that the hairs themselves are narrow in diameter.

No surprise then, that I should have inherited a head of hair that seems to be self-winnowing. And I'm fine with this. It's not that I've resigned myself to going bald. It's more that I couldn't care less. If I end up looking like Daddy Warbucks, then it was meant to be.

There is one thing that would bug me a bit, though. As the hair at my temples recedes, the hair at the centre of my forehead shows no signs of following suit. I have visions of a future in which most of the hair has fallen from the top of my head, leaving that stubborn little patch at the front all by its lonesome. It would become an island of hair, floating on a sea of shiny skin.

With this vision in mind, I entered into a verbal contract with Jessica. I called it the "Island Clause". If I should ever show signs of "moving to the Island", then I have full permission to shave my head to the scalp. I might look like a wannabe biker, but at least I wouldn't look like a unicorn. Or worse yet, a bad clown.

Today, after waiting for more than a week, Jessica and I met with a group of doctors to discuss treatment options for her tumour. In a few weeks, she will begin a 6-week treatment of 30 sessions of radiation therapy. There is a list of unpleasant side effects caused by radiation therapy. I won't go into all of them here, but one of the more prominent ones is hairloss. After a week or two, the hair will begin to fall out wherever the rays enter her head. This will apparently occur at numerous points, and will mean that patches of hair will fall out. Worse yet, the doctors informed us that the hairloss may be permanent, and that if it does grow back, it may take up to 6 months to do so.

So it turns out that Jessica may be enacting the "Island Clause" long before I do. Or we may just shave our heads together! How cute. Two little Daddy Warbuckses, hanging around the mansion, counting their war bucks together. Being bald will never look so good.

July 29, 2010

What is it like to be Grieved?

I will explain the title of this blog in a few moments, but before I do I feel that I need to explain something of the approach that James and I are taking these days. There is one Old Testament story in particular that I have not thought of in years that has taken a hold in my mind. It is found in Numbers 22, and it is the story of Balaam.

Balaam was a prophet of sorts that was called upon by the King of Moab to curse the Israelite people as they were taking over Israel under Joshua. However, Balaam knew that God would not let him curse the Israelites so he told the king's messangers that he would not do it. He tells them that "Even if the king were to give me a palace filled with silver and gold, I would be powerless to do anything against the will of the Lord my God." However, the king tried again and Balaam decided to go anyway, promising to God that he would only say what God told him to say, be it blessing or curse.

As they start out the next morning, Balaam experiences a lot of trouble with his donkey. The donkey sees an angel with a sword blocking his path and does everything he can to avoid the angel. He runs into a feild, he crushes Balaam's feet against the stone wall and eventually he just lays down on the road and refuses to move. Each time Balaam beats him. Eventually God lets the donkey talk to Balaam and the donkey says "What have I done that deserves you beating me?" Then God opens Balaam's eyes to see the angel and the angel says to Balaam, "Why have you beat your donkey these three times? I have come to block your way because you are stubbornly resisting me. Three times the donkey saw me and shied away, otherwise I would certianly have killed you by now and spared the donkey." The angel then tells him to finish his journey, but only to say what God would have him say.

When Balaam arrives and looks over the encampment of the Israelite people he blesses them. Not once, not twice, but three times.

James and I feel strongly that we are on a path that we can not escape from. It is a path that has been set out for us and there is a donkey under us that is being guided by an angel of the Lord from behind. We are not even using our own feet. I have no desire to try and guide this donkey, because if I do I'll just get my feet crushed against the walls lining this path.

I also feel strongly that there are two componants to this path we are on. One componant is that of faith, trust and hope. The second componant is that of death.

In the first componant there is a beautiful relationship with Jesus Christ where James and I both know that he is with us in personal and meaningful way. Do I feel attacked? No, because I feel so protected by him. Do I believe that he can heal me? Yes, and it wouldn't surprise me in the slightest if he does. This is not a battle in my mind.

The second componant as I mentioned is one of death. I think a lot of people will cringe to hear me say this, as if I have given up or something like that. But lets face the facts. For as much as the Bible talks about fullness of life in Christ and his good plans for our future, there is also a heavy emphasis on death that we only seem to think is applicable only when we attend funerals. Even though we as Christians we talk about Christ having power over death, we still do not like to think about it very much. When someone is sick, we pray for healing. That is fine. It is also biblical.

However, if we think that the only answer to sickness and death is healing, then we turn the great potential for God's work into something that is very one dimensional. If God healed everyone who became sick, we would start to believe (with reason) that God is also afraid of death and that even HE thinks that death is to be avoided at all costs.

This is not true. After all, Jesus himself died. God became a human and then he submitted himself to a very humiliating death. He also overcame death. We are reminded again and again in the Bible that this earth is not our home, and that without our even being aware of it, we long for our true homeland. I remember many times in China where I thought about Canada with longing. If the process of my death could show to others the fullness of his life in mine, even in the face of death, what more could I ask for? What if the death of a Christian could seem beautiful? If there is beauty and hope that I can embrace, even in death, then I want to. The thought of struggling is so unappealing to me.

That being said, James and I are walking this road as one that will likely lead to death, and we are doing it willingly, because we feel that to close that door would be to refuse to let God show himself to us in the Valley of the Shadow of Death. I think that if I refused to walk this path, all the peace that we have had would fly out the door. Obviously we do not want it to end in death. We have cried together, sometimes daily, out of a deep feeling of painful loss. Everyday I cry at least once. Of course we have asked God for my life and for healing, because he KNOW he could do it. We walk the path believing that God could pull us off of this in a moment if he if it is his will. But I don't want to have a faith that is unable to look past the issue of healing. I want to have a faith that takes in as much of God's controversial character as I can. I want what he has for me, even if it is not healing. Just think of how much we stand to lose if we choose only to look at the physical healing side of God's character.

What is it like to be greived? This has by far come forward as one of the strangest experiences for me in the last few weeks. As the seriousness of my condition has come to our attention and the doctors start to use words like "life expectancy", I have begun to see in the people around me the beginning a process that I always assumed would happen after I died. They are starting to greive me. Maybe one of my sisters will look at me with tears in her eyes, look away and then mouth the words "I love you". Maybe James will hold my hand while he drives and look at me for long periods of time with a generically sad face. Even Ari and Jude have been cuddling with me far more than they used to, even though they don't really understand what is happening. My parents hover over me tenderly. There is tenderness and gentleness in every interaction, and emotion is never very far from the surface.

I feel two things about this. One is that I am honored to be a part of it. I am glad that instead of some type of freak accident, I have the chance to have important and open conversations with those I love over a period of time. I know it needs to happen and there is no way that I want them to hide this from me. But on the other hand it is very hard for me to watch, because as a human being that is still very much aware and alive, I am wittnessing the people I love begin a process that ends in letting me go.

I have cried a number of times over this thought, that eventually, if things follow what we are being told, my family will need to move on in thier lives. They will always remember me, yes. I am a unique individual, yes. Irreplacable, yes. But I am human, and eventually people's lives will move on without me. My boys. My husband. Today as I struggled over this, greived this, I prayed and asked God to show me something about this that would make it a little easier to bear.

This is what he reminded me of. The Bible is full of statements of precious we are to God and how we bear his annointing and how he lives in us, how nothing can separate us from his love. I am irreplaceable to the creator of the universe, my Father, my friend, my lover. Psalm 139 says that he knew me and created me in my mother's womb. This means that he has been intimate with all of my inner being since before I was born... before any other human came to know me I was irreplaceable to him. Even if my family, the dearest ones to me will eventually need to move past me, let go of me, live without me and even find others that will fill the role I would otherwise play, I am irreplaceable to God. Rather than feel any amount of betrayal about these things, I want to soak in his love for me. Right now I can not understand his love for me, but eventually I will. As Christians we often use these promises and this irreplaceable God role to have special meaning for the specific circumstances that we are in. That is fine. Of course we want to understand God in light of our situations. But suddenly I am realizing that this is the only thing I have, and even though the sting of being greived is still there, it is amazing for me to know that I am intimately known.

July 27, 2010

Life on a Horse Farm: The New Normal

Lest it should seem that this blog has recently transformed itself into a venue for depressing and distressing news, I would like to actively work against this tendency by continuing to post for the purposes that we were originally using. In one sense I feel as though the blog has lost its interesting background in Beijing, but if we look realistically at it I suppose we would see that the stories being told in the past were fairly ordinary. What we have now is just a new normal.

For the last week and the next week, "normal" is living on an acreage on the Canadian prairies. My sister and her husband have extremely kindly vacated their home for us. They live as caretakers for an equine park. So what this means is that a hundred yards from the windows of the house we have this view.
There are several dozen horses being boarded on this farm. For miles in every direction we have nothing but tall, sweet, prairie grasses, horses running around and being exercised and solitude. Its pretty much perfect for the family that has been through our last few weeks. I can't describe how soothing it has been for me to fall asleep with the smells of sweet clover from the fields, the sounds of crickets and birds from my childhood and the cool breeze coming in the window. Last night James and I lay our bed and just listened to the sound of the house being buffeted by strong winds and rain. I have forgotten how ferocious the wind sounds as it whips around uninhibited in a good storm. It used to scare me, but last night I loved it.
This housing has been perfect for us. Close enough to people to have contact, but isolated enough that I don't need to interact with too many people.
Another strange feature is that we also have our old cat around again. This cat lived with us for almost four years before we left for China (my sister took him then) and it is amazing how strange it is to have the boys playing with him again. We are talking about the "world's most laid back" cat, who lets Jude truck him around by one rib (bent in hairpin shape).
There are other aspects to my new norm that I have a harder time getting used to. One is that I am almost constantly in a dazey dreamlike state. I can fall asleep at the drop of a hat and when I do, I dream strange jerky dreams where I am completely unaware. It is a bit unnerving and makes me feel very vulnerable when I wake up from one of these episodes. But I am learning how to read and calculate myself even in this new state.
Before I leave off, I have to state again (just in case I haven't said it recently enough) that James is God's greatest blessing to me and to our boys. What an amazing husband. For better or worse he is here, and I love him very, very much.

July 24, 2010

Craniotomy Part 2: How My Jesus Has Proved Himself to be my Fortress

Before you read Part 2, I have to insist that you read part 1. However, because of the way this shows up on the blog you may be tempted to read part 2 before part 1. Don’t do it.

Psalm 48:3 says that God himself is in Jerusalem’s towers and that he reveals himself to be her defenders. Verse 4 and 5 say that the kings of the earth joined forces and advanced against the city, but when they saw it they were stunned, terrified and ran away. Verse 8 says that we had heard of the city’s glory, but now we have seen it for ourselves, the city that he will make safe forever.



In the last day I have seen this, I have witnessed it in my life, and I would be a blind man if I did not walk away from this deeply impressed by the beautiful weight of this blessing I have been given. My Jesus is my tower, my defender, my fortress and I will be safe there forever.





As James described the process that I went through to have this biopsy, I hope that you were cringing mightily. I’m not t trying to toot my own horn here, but there is something deeply psychological about feeling and hearing screws crunching around the bones in your skull at four different spots, followed quickly by about 20-25 long, thick syringes of freezing puncturing into the skull again and again, and the feeling of numbing juices pumping into your head. Call me a drama queen if you will, but I never want to experience that again. Once the frame had been mounted, adjusted and readjusted several times, it was like have metal inside my head. Every time the frame was touched the reverberations traveled deep inside my head, sending a jittering feeling down my spine and into my teeth. This is not to mention the operation itself for which I was partly awake (especially during key moments like sawing through my skull, pulling and prying).



In order for you to understand how this fits into my Mighty Fortress, I have to go back a year and a half in time. Exactly one week before we left for China, in February of 2009, I had a dream that puzzled and confused me to the core of my being and I have wondered about it ever since I had it. In this dream I was sitting in an empty room by myself on a single chair, holding a gun. I was thinking to myself very calmly about the pros and cons of killing myself. I wasn’t feeling sorry for myself. I wasn’t trying to get people to notice me. I was just thinking about it logically. I speak in total truth when I say that I have never in my life been suicidal, but for some reason in this dream, I decided that I was going to do it. I lifted the gun to my mouth and I pulled the trigger.


Instantly, my head became very heavy, like it was filled with lead and it was like there were pressure points on my skull, pushing in. I could not lift my head and it was filled with darkness and weight. I felt my life leave my body and I went into a very dark and a very small place. In that place in head, I heard myself say, “Jesus, do you have anything to say to me?” Instantly I heard a response. He said, “Jessica, you hold my life in your hands.”

But everything about that seemed wrong to me. After all, isn’t it God who holds OUR lives in HIS hands? I tried to correct him, but he spoke again and in that small dark place he said to me, “Jessica, you hold MY life in YOUR hands.” After that I woke up, and that dream has stayed with me ever since, making me wonder what it could possibly mean, or why I would have had that dream when I have never been suicidal. Besides, I have always been under the impression that people don’t usually feel themselves die in their dreams.
Yesterday after they pushed, pulled, injected, screwed and pressed things into my head, they shoved me into a tiny, dark little MRI machine, and suddenly I was back in my dream again. I was in a small dark, enclosed space, with metal in my head, pressure pushing in from the outside and an inability to lift my head. It was 100% exact sensation I had had in the dream after I shot myself. The intense pain, the pressure, the exact same sensations. And in that small, dark, very scary and painful MRI machine I could hear the exact same words spoken to me again, over and over again. “Jessica, you hold my life in your hands.”


I know that there are a lot of conclusions that people could draw from this. I know it sounds crazy. There could be theological discussions, healing discussions, suicide discussions… but I’m not that interested in those, because I know that I got exactly what I needed from it. I now know, that God saw this coming and he prepared me for it. I know he loves me so much that he would give the same physical sensations to let me know that he is was/is with me during a time of extreme physical duress and emotional pain time in my life. He was with me in the place telling me that the power of his life is in my hands. If I have the power of God’s presence, I do not need anything else… even my human life. I can let go of my life knowing that his life is far greater than mine and that what he chooses to do is what he will do. Praise his name, no matter what happens I am safe in his walls! I don’t say any of this with a feeling of helplessness or giving up. Rather, it is submission and it is peacefulness…


The preliminary medical news we have received from this biopsy is not good. With the worst level being a Grade 4, Crang looks to be either a 3 or a 4. It looks like we’ll be going to surgery within six weeks, with potential for serious loss of functions on my part after the surgery. After that, chemotherapy, radiation, gradual degradation…


But he spoke to me, and no one can ever take that away from me. He loves me and no one can ever take that away from me. He loves my children and my James and no one can ever take that away from me. What a blessing! What a gift!

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 Description 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…






















July 17, 2010

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.

July 14, 2010

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.

Pictures Part II

The first picture is our brother in law Carlos who was enthralled by the homemade bird kites that get made here in China.  James, he, the boys and another friend were able to get away from the hospital for a little while yesterday to have some fun in the park.  While I was bored and extremely unhappy at the hospital, I can honestly say that I was happy not to be constantly subjecting them to my misery.
 
Second picture, more fun in the park.  I think that the boys are unmatchable in their enthusiasm for juice (not that they get it that often)
 

July 13, 2010

Thoughts from a hospital bed

Still no journal and still lots ot thoughts so here I am again.
 
What bittersweetness has been the last few days.  I don't think the human brain (especially mine apparenty!) was made to handle such contradicting thoughts.  Only God can help me come to terms with all the things that can simultaneously coexist in my head right now.  I don't want to speak like someone expecting to die, but when you are brought face to face with that possibility there are certain things that happen.  I don't want to play on emotions or be dramatic, but suddenly I have this great desire to be an open person, not to be hiding things and not to leave things unsaid.  This is not out of fear, but rather out of a great gushing from within me.
 
James and I have had much opportunity for conversations from my hospital bed and these talks have been so very meaningful for the both of us.  One thing that James and has said over and over again, is that an event like this acts like a plough that comes and stirs up the soil of your life, and in that ploughing, you get to find out what has been there all this time, or the different things that have been growing (other than tumors!).  In one sense, I feel like I have been given a great gift.  How often have we heard people ponder the qeustion, "What would you do if you knew that you had X number of months/years to live?"  Whatever the outcome of this whole thing is, I feel like I have really had the chance to ponder that question, and the seeds this plough has turned up have been very precious to me. 
 
1) I am so proud of myself.  I'm not trying to be vain, but I don't have any resonant feelings of having wasted any of my twenty six years. As cliche as it sounds I wouldn't change anything.  I am so happy with James and I am a very proud mother.  I am happy that I have gone to school and that I love nutrition and that I can speak Chinese.  I am happy that I have loved James and the boys with all my heart without clinging desparately to them.   I am so proud of the boys and I am so pround of James.  They fill my heart with joy like nothing else.  If anything happens to me I have no doubt that they'll have the best father in the world and I think I have the smartest, cutest boys on the planet. 
 
2) I am so happy for my friends, family and friendships.  I am happy for having loved people and been open with them, for hearing other people's stories and appreciating them for their own unique value.
 
3) I really love the Chinese people that I have come to know.  There is a certain lack of fear that exists in them that we do not see in North Americans.  I don't know how to explain it, but there is this expected inevitability that in your life you will eat bitter things, and when that happens, all you can do it eat it.  None of my Chinese friends have shied away from the strength of emotion that I have even been scared of in myself.  They hold my hands (literally), they have prayed and spoken words of encouragement.
 
4) I am so happy that I have been saved from a meaningless life apart from God.  He fills my days with beauty, with purpose, with life.
 
5) While we are writing a list, I might as well as add that my Dad is also scheduled for an angiogram sometime in the next week and my Mom recently had an MRI.  When it rains it pours!
 
It is awfully strange to have these sensations combined with a definite sense of limited mental ability.  We don't really know if it is the medications or the tumor, but I have very limited concentration.  Reading and concentration is difficult (such as looking at anything, thinking, walking), but I also have another day to kill until the doctor arrives to escort me back to Canada.  I have to sit still when I am normally used to being very active, both mentally and physically.  I could spend all my time watching movies, but right now that just seems like it would be a waste ot time.  James is being quite a trooper.  He is playing guitar for me for hours on end.
 
To sum it up, there is no way to sum up the way that I feel.  I battle boredom and a feeling of uselessness of all things.  I battle confusion and I feel intense gratefuleness at the same time.  What are humans if not complex?  I feel some anxiety for the boys, because I wonder what they will remember of this.  They say children adapt quickly, but as we saw with coming to China, Ari took a little longer than we expected.  At what point in thier childhood do we explain the Mommy had a brain tumor that could reappear?  Who knows?  Right now I am okay with not knowing.
 
This blog post is simultaneously scattered, dramatic, overdone and not enough... but none of these things on purpose.  I look forward to seeing many of you soon!
 
Love Jessica

July 09, 2010

The Ravings of Jessica's Brain Tumor

I will try to put into writing the events and the emotions of the past few days.  Why on a blog, you may ask?  It maybe seems a little to public a place to put private thoughts and emotions  Well, there are a few reasons for this.  One is that I can not use my hand to write in a journal due to the constant presence of a painful penetrating saline lock in my right hand.  Typing is a little more endurable, but I fear that if my thoughts don't get out, my gloomy presence will darken the atmosphere of so many people who are trying to help me.  Another reason is that I have had this idea of one day printing up this blog in a sort of book form for our family to look back on in years to come.  It would seem a bit neglectful to overlook an event of such an earthshattering nature that occured during our time in China.  Another is that this is the most effective way for me to respond to all the emails from people asking about my well being.  So that being said, here are some categories of things going on in my mind.
 
1) Fear (of course)
Having a seizure turns out to be a very terrifying experience.  I have dim recolections of reading Chinese characters at school, watching them change on the page in front of me, smelling an odd smell and feeling a strong sense of deja vue  These pre-symptoms had also happened twice before, but when I laid down they went away.  My mouth suddenly stopped working and I was trying to apologize to my teacher for my sudden intense confusion.  I figured that if I went to drink some water I could maybe shake it off, but as I held the water in my hand, I found that I could not control it and it was splashing all over me.  I remember calling for help, but I don't remember hitting the floor or going into convulsions.  After that it was all a blur of hearing voices until we had been in the emergency room for a while.  They took me for a CT scan pretty quickly, and upon hearing that I had a 4-5cm tumor, I started hyperventilating.  James was very good about acknowledging all of the variety of thoughts that we had in our minds without dwelling too much on any one of them.
 
2) Confusion/Depression/Guilt
Of course I wondered if I would live to see my boys grow up, or if I would eventually fade into a dim memory in a few important people's minds.  I have also been on anti-stimulant drugs to keep my brain from becoming overly stimulated.  These have made me dozy, somewhat depressed and unfocussed.  The guilt of course comes from the knowledge of just how many people's summer vacation I am personally ruining and how much money is being spent on me.  I know it can't be helped, but it certainly is not anyone's idea of a good time to be running around at all hours of the day and night working out things for me.
 
3) Curiosity/Humor
I will be very bummed out after my surgery if they do not let me see this thing that has been growing in my head for who-knows-how-long.  Being in nutrition, I have had to take a number of classes on the human body and its goings on.  I would be fascinated to see the small portions of my own brain that they remove and the tumor as well.  Also, if I suddenly require any type of "hair loss" inducing treatments, I will get to see what I look like bald.  That ought to be interesting. James has been trying to convince me for years that I should shave my head.  Another part of the humor comes from how everyone is referring to this as "Jessica's tumor".  I think this is funny because it sounds like something that I have been carefully nuturing and hiding over the years, like a precious fungus or a strange monkey's paw.  For the record, this does not offend me.  After all, what else are you supposed to call it?  Jessica's pet?  It also reminds me of the story from the Bible of the Philistines returning the Ark of the Covenant to the Israelites and placing golden rats and golden tumors inside.
 
Another part of my curiosity is from wondering what my head will look like after this.  Obviously, this tumor has misplaced something, so it is just going to be empty when they have taken it out?  Will I have a steal plate in my head?  Will I have a baby-like fontanel?  "Hey guys, Jess is getting angry, her dent is turning red!" 
 
4) Thoughts about the future
Suddenly it seems ironic that I was whining a bit about missing Canada, the clean air and al the open spaces.  While I never really thought that I wanted to go home, this whole thing has made me certain that I am not ready to leave China yet.  If we were leaving for good, my heart would be breaking right now.  We have so many friends, we have gained so much training and ability.  As the days pass, I am beginnging to view this whole thing as something that I will live through rather than an untimely end to my life.  Of course we still don't know for certain what the nature of this whole thing is and my mood changes several times per day, but everyday seems a little more positive (except for my restlessness at being cooped up in the hospital).  I am dizzy and easily exhausted, I do need people to help me do everything, I have limited interest in outside stimuli, my appetite is at an all time low.  Most of the time I sit in a dull emotionless world and wonder "Is this really my life, my story? It seems too dramatic, so sudden! How will it end?"
 
5)Thankful
Thank the dear Lord this happened exactly when it did.  Three days before the seizure I was in Chengdu (2 1/2 hour flight away from Beijing) by myself for the day and it would have been terrible if I had been on some street somewhere in Chengdu where no one knew me and it had happened then.  Or what if it had happened when James was traveling and I was at home with the boys?  They would have been terrified!  God was watching out for all of us!  My sister, Tannis was with me and able to respond very quickly.  My brother-in-law, Carlos, was able to stay with the boys while James brought me to the hospital.  The boys have been in good hands with them, they have been kept in a reasonable schedule and have had just enough questions answered not to be too worried about me. 
 
My God loves me so much, and he loves my children, and he loves my husband and family.  I have even heard from people from whom I thought I'd been estranged,, and this has perhaps been the greatest blessing of all.  If good can come from this, let it come.  For the trials we face, I want to gain the most from it.  For the blessings that we gain, I do not want to be blind to them.
 
Thank you Lord Jesus for your faithfulness and for your love!  Amen.
 
 

July 06, 2010

News you don't expect to read on our blog


This is James writing for Jessica.  Monday was a strange day.  At about 4:30 in the afternoon, Jessica had a seizure.  She was experiencing blurred vision, a strange smell and a strong sense of deja vue.  She went to get some water to drink but she fell and hit the floor hard, and was convulsing for about 20 seconds.  At that time, she was attending language class.  Tannis and Carlos (Jess' sister and her husband), had just arrived on Sunday so thankfully, Tannis was with her.  Carlos was at home with me and the boys, so I was able to go straight to get Jess, who was unable to walk.  We arrived at the hospital, by which time Jessica had recovered a bit of her mental clarity, but was still unable to move much and was very confused.

Over the last two days we have gone through CT scans and an MRI, both of which reveal the presence of a brain tumor about 4-5 cm in diameter.  It is located in the right side, occipital temporal area. 

We are all doing well.  Carlos and Tannis have been a huge blessing, and we are convinced that it was definitely God's timing to bring them to Beijing now.  Jessica is a little bit scared, but is also smiling.  I'm very proud of her.  Our Chinese friends have also been a big help to us, especially since Tannis and Carlos do not speak Chinese and don't know how to get around or buy food for the boys without their help.

After a long day yesterday we received some very good news.  After Jessica's MRI, we were visited by the neurosurgeon.  He said that the tumor does not appear to be malignant.  It is located in a very accessible region of the brain, not close to regions that may cause unwanted side affects.  (However, it may mess with eyesight and speech, so this is something to pray about.)

Additionally, he said that there appears to be some calcification of the tumor, which implies that the tumor is old (as the protein exits the tumor, proportionately more calcium remains).  This is good, because it indicates that the tumor has been slow growing.  If fact, he mentioned that some individuals may even be born with brain cells that gradually grow throughout life, and that the tumor may have been around for years.

The interesting side is that the presence of the tumor explains a number strange things affecting Jessica of late, including vision problems, spells of dizziness and confusion, strange smells, strong deja vue and dull headaches.  All these things can be explained by the increased pressure in her cranial membranes.

The immediate steps to be taken include putting her on a medication that reduces edema (gathering of water in the brain) and also a type of anti-epilepsy medication.  They could operate as soon as a day or two from now, but this point we need to make some decisions about where to have the surgery done.  After the surgery, there is a chance that she may recover within five days!

I don't know what else there is to write!  Praise God for his provision through all this.  We've been really blessed by our friends and family!


James


July 01, 2010

Smorgasborg

This blog posting unfortunately has no theme.  It is a mix and match.  However, I have been planning for some time now to do a feature (or maybe two) on Chinese fashion.  I was actually scolded last week for taking pictures of the clothing in a department store.  That should appear on hear somewhere in the near future.
 
A few nights ago, Ari drew that picture that you see here.  James and I were quite surprised by it.  Its not as though he has spent hours staring at pictures of ships and water, but somehow, he used a really unique persective to capture this scene.  He did this entirely by himself with no help from us.  There are even tropical-like fish swimming in the water.  He was very pleased to hear that I would put it up on the blog for the whole world to see.
 
James took the other picture of Ari one night when he woke him up to go to the bathroom.  He is totally asleep in this picture, but it seems that before he fell asleep that night, he took the time to tie a pair of socks around his feet.  True child logic for you.
 
Last night we were invited to go out for Karoke with our Chinese teachers and some friends who are leaving Beijing.  This is a truely favorite pastime in China.  Everyone sings karoke (they call it KTV) and they take it very seriously.  Sometimes when there were a few too many selections of extremely slow and sentimental Chinese songs, it was a little boring, but we spruced it up for ourselves with our own selections.  James and I sang a dramatic duet of "A Whole New World" , "Sweet Home Alabama" and some Beatles songs.  Our friends selected "Hey Jude" and felt that I was the most logical person to sing that song.  Jude danced at the front of the room for the whole song.
 
Recently we have had a number of expat friends leave for their home countries, and it is a bit strange to see them leave.  This is especially in light of the fact that we have another 20 months before we will see our Home and Native Land.   I admit that it has made me a little on the homesick side, and it doesn't help that we have had smuggy weather for a week straight.  Tomorrow I fly to Chengdu for the day, but it is usually just as bad there as far as air quality goes.  Last week, James was in South Korea and I wanted to cry when I saw all of his pictures of clean air and open spaces.  Oh to be surrounded by feilds again!
 
On the bright side we are not entirely without reminders of home!  In fact, as I write my sister Tannis and her husband Carlos are driving to Vancouver where they will depart for Beijing this Saturday.  Hurray!  It seems a little hard to believe.

We are truly excited to have them come as this is our first family visit.  It couldn't come at a better time!  We've been fighting a bit of the blues lately and welcome the chance to be with some family again and show them our world.  They have strict instructions to buy several Kgs of Tim Horton's coffee, some fresh Honey Glazed Donuts and fresh Fruit Explosion muffins from the Tim Hortons at the Vancouver airport before they leave.  Granted that 12 hours on the plane will make them a little less fresh, but who cares about that!  Yikes, does that ever sound like it is from a Tim Hortons comercial!  For the record, I did work for them while I was in high school, so maybe I owe them this free advertising.
 
Along with them, we also eagerly await the arrival of James' guitar, maple syrup, vanilla, Canadian Smarties, rhubarb (if it doesn't get confiscated!), Canadian gifts for our friends, books, and much more.  We anticipate many happy evenings of playing Settlers and eating popcorn, a visit to a water park, sightseeing (of course), and just some good and fun conversations.  We have a lot to do and I think that the time will go by very fast.   
 
In closing, I must shamefacedly admit that I completely forgot that today is Canada Day. As trivial as it sounds, I actually do feel a little cheated that I have been deprived of my annual shot of patriotism.  Canada grows quite dear to my heart these days and right now it seems very far away. 
 
Chinese perceptions of Canada are very interesting.  The other day a total stranger said to me, "You Canadians don't lock your doors when you leave the house."  I was quick to correct her. "Actually we do. Of course we do!."  The response was instant, "No you don't, because there are so few people in Canada, and you don't have bad people."  At times like this, I wish I could climb into their heads and see exactly what they imagine when they think about Canada.  I also thought it was interesting during this conversation that the lady felt so free to tell me exactly what state I leave my doors in when I leave the house.
 
Enough for now!  Be expecting a fashion blog sometime in the near future.  What I really wish I could do is post the Chinese fashion shows that are always played on the bus.  Now those are interesting!  The most recent ones have had muscular men dipped in silver paint to look like Greek statues.  Very very dramatic!