October 30, 2010

Prepared for Anything

After our my appointment yesterday, I turned to James (home for not even 24 hours) and said, "Well, I went into that appointment prepared to hear anything except that"... And on that note I will leave you dear readers in suspense (ignoring your ability to scroll down and read ahead) and back up a bit. Actually the appointment was so confusing that I scarcely know how to summarize it.

I went for my MRI on Friday Oct 22. I was very unconcerned about it, any amount of anxiety came from my dread of having another IV. I know I should be used to these things already, but I HATE IV's! They don't make me nauseous or anything like that, it is purely the physical sensations of something penetrating my skin and going into my veins. Ugh! But after being poked and prepared, they slid into the MRI machine. On a sidenote, I did pause to wonder who the inconsiderate technicians were that did not think to offer me a heated blanket after making me remove everything except a thin hospital gown. So much for laying still during an MRI, I shivered the whole way through!

I was warned that this machine was louder than the others I have been in and they gave me headphones to protect my ears. Sure enough it was incredibly noisy. It occurred to me during the procedure that someone should write a musical-like song based on the noises made by MRI machines (purely for the benefit of those who have had to experience them). It reminded me of one of those scenes from musicals where the music begins with the coming together of random noises on the street. The tinkling of some wind chimes. The thump-thump of a woman kneeding bread. The thin streaming sound of a cow being milked into a tin pail. The crashing of the blacksmith's hammer. Etc, etc. etc.

Just like that, the MRI machine makes such random and yet rhythmic noises, that you never know what will come next. A silent moment broken by a loud buzz that makes you jump out of your socks (if I'd had them). I estimate that I would need about 20 MRI's to write the music for the ultimate MRI song. At one point the rhythm and beat reminded me of the Christmas song "Do You Hear What I Hear?". It started with a high whispered rhythmic beat, that was then echoed by an ear piercing base beat (same note but about four octaves lower).

Anyone want to back me monetarily for the producing of "The Ultimate in MRI Hits"? Just think of all the marketing opportunities. "Hey all of you cancer survivors! Don't you miss the days of MRI's, CT scans and IV's? You don't have to! We have recreated all of your choice moments in this compilation album for only $49.99!"

Anyway...

We were under the impression that this meeting yesterday was going to be revealing and informative, but in reality (surprise, surprise), it turned out to be another gigantic "Nothing to Report". I thought we were going to find out what the impact of the chemo and radiation had been, so I was asking all the wrong questions. Meanwhile the doctor was under the impression that we all mutually understood that this MRI was only taken to create a new baseline for monitoring purposes and not to reveal earth shattering information. To summarize the conversation would be very confusing, but even the information we thought was for certain seemed up for change.

Essentially, I was very confused which is why it was good that James (even in his jet-lagged state) was with me and able to understand. It didn't help that the doctor had a thick accent. (Incidentally, as we left, James turned to me and said, "Man, that guy's accent is awesome! I wish I had that accent!")

James' summary of the appointment was this: The MRIs that are taken over time are for the purpose of creating a "graph" of sorts, and only after we have had a number of these monitoring MRI's (every three months) will we know how the tumor changes (good or bad). The best indicator of my health is that in my day to day life, I am doing well, functioning without huge amounts of drugs etc.

I went into the appointment not really caring what we heard, but the vagueness of it only served to confirm thoughts that were already growing in me, those being: "I don't care what my medical prognosis is". I can't even imagine how irritating that appointment would have been if I had been nervously awaiting it and pinning my hopes on its outcome. Its hard to believe how much the information changes every time we hear it. As it was, James and I walked out of the appointment giggling together about how funny and inconclusive the whole thing was. We decided on the way home that our new approach is going to shift from "What are Jessica's limitations?" to "Jessica is going to do everything that she possibly can."

On a side note, I am not commenting on the competence of the doctors. Far from it, they are doing "their part", just as it is doing "my part" to live to my full potential during this strange and unclear time. If anything, the lack of conclusive information coming from the doctors is merely a reflection of just how much is not known about brain tumors. That is why I am not going to base my life on what they say. I will take care of myself to the best of my ability and not do things that endanger other people, especially the boys.

I bought my medical ID bracelet this last week and explained to Ari that if I ever fall down and can not talk to him, that he should find the nearest adult and tell them to look at my bracelet and they would know what to do. We have explained to Ari in child appropriate terminology that there is something in my brain (that is not supposed to be there) that sometimes makes me fall down and makes me unable to understand people. He understands that, and he seems to understand the bracelet too. We have decided to give the boys information in stages. As they understand more, we will tell them more. At this point time seems to be on our side.

That's all for now, except that it is so good to have James home again! I realized when he got back that I had been steeling myself against hope for his return. Somewhere inside I was convinced that something would happen to delay his return or that something would happen to him. Ahh, women are strange!

October 19, 2010

Swimming!

I know this is my second post in one day, but here are some pics of the boys with me and my family at the pool. Seeing the boys wearing water wings reminded me of a time when I was swimming as a kid (here's some of those memoirs!). I had four water wings, and I thought that it would be extremely clever of me to try wearing all four at once. One on each ankle and one on each wrist. No sooner did I get them on then I was underwater! My body bent into a deep U-shape with my hands and feet above water. I also soon discovered that no matter how hard I struggled, my water wings wanted to stay on the surface of the water! After some frantic thrashing, I managed to get one of the wings off, which then had me with one leg suspended and the other grasping for the floor. When I had corrected the situation, I looked around to see if anyone had wittnessed my shame. No one had! But I certainly learned my lesson!



Ari also learned his lesson yesterday with the ball in this picture. I watched him with a mischievous gleam in his eye as he crouched on the edge of the pool, preparing to leap onto the top of the ball. He lept, and to his astonishment the ball rolled over on his weight and he was immediately underwater! I have never seen such a look of astonishment on his face as when he came up!

Why Does She Talk So Much About Faith?

Obviously I don’t have the benefit of taking a readership pole, but the question that I imagine many people have is, “Why does she always talk about faith?”. I imagine people asking this question because I have asked it of myself. The only reason I can think of is that in Bible tells us to focus our eyes not on what is seen, but on what is unseen because what is unseen is eternal.

If for no other reason, I fix my eyes on what is unseen because I can’t bear the burden of my “seen” everyday life. I can’t even begin to describe that feeling I get, when in the space of a few minutes it feels like someone has laid a lead vest on me and weighted it down with anvils. I won’t try to describe the feeling, because I think everyone has their own experience of this. For me, this usually happens daily at about 3:00 in the afternoon.

I CAN’T look at what I see, because what I see is terribly depressing. So I MUST look at the unseen, and that requires faith. Not flash in the pan faith, but a daily faith to believe that what is unseen really is true.

As some of you may have seen from the comments on the blog, a church leader recently gave a sermon using portions of my blog as illustrations. He sent me a copy of his sermon, and one evening alone by myself, I listened to that sermon. I felt that he put together a wonderful message and that he represented my thoughts well.

However, there was another interesting side effect of hearing that sermon – for the first time, I saw my writing through other people’s eyes. I couldn’t believe that the words I shakily type when I sit alone with my computer, come out sounding so full of faith. I sound so darn certain of myself in the face of this trial! I found myself thinking, “Who is this Jessica Frey? I really need to meet her and talk to her.” But nobody sees me when I lay on my bed and stare at the wall. Nobody sees how easy it is for me to give in when the pain gives my heart a good twist several times a day.

You may ask yourself (as I do), what exactly is it that hurts so bad? But I have no answer to that. I can’t put my finger on it. It just does. So much has been lost.

In nutrition we talk about acute malnutrition and chronic malnutrition. Acute malnutrition occurs during times of natural disasters, war, etc. It is a period of intense food shortage that causes a child to become very skinny and bony, but after a time it ends. There are some serious impacts to a child’s body, but generally speaking for the long term, the impacts are reversible. With chronic malnutrition however, the child is deprived of food for such a long time that it actually stunts their growth and development. These effects cannot be reversed and for the rest of their life they will bear the inner and outer markings of that period of malnutrition.

I think faith can fall into these categories too (I know there are people who could blow holes in this analogy). There are many times in our lives when we are called upon to have intense faith for a shorter period of time. These times are important, but perhaps it is easier for us to “recover” or even sometimes to forget after these times. However there are other times when our faith needs to be more durable then it does intense. Durable, because there is a long stretch of wilderness ahead of us. We will bear the marks of this time for the rest of our lives.

In the beginning of this crisis, I think I had an intense faith. That intense faith was a gift from God. Nothing else would have been able to get me through those first few weeks. And in those first few weeks, I made a lot of big, bold statements. But now we are stretching into months. And just like the Israelites in the wilderness, I find that if I don’t get my manna from heaven each day, I’m a basket case. You can’t sprint the marathon. I still believe the big bold statements I have made, but let me tell you they are being put to the test of time.

These last few days have been especially hard emotionally, with James gone to Beijing. Not only is he where I want to be, he is NOT here with me. Even though he is coming back, I still have the sensation of having been stripped of yet another thing. I’m not saying this is true, but it FEELS like I have already been stripped of a future, stripped of my independence, stripped of having a future role in my children’s lives, and stripped of any meaningful occupation for my time. Having James away has stripped me of the only person who grown with me continually for the past six and a half years, and intensively grown with me in the last three months. All those things combined together makes me feel like one lonely individual.

What can faith do for me when I feel like this? I’ve been asking myself this question everyday. I think sometimes the only thing that keeps me going is that I have a deep desire to show God that I love him. When I could be complaining in the wilderness, I want God to look at me and see me thanking him for his goodness and telling him that I love him. After all, who demonstrates love better? Someone who gives a dozen red roses on Valentine’s Day or someone who stays with you when it is easier to leave?

I want Jesus to know that I love him, so I want to sing for him when it would easier to scream at him. I’m not saying that I should squelch the desire to scream (I have screamed). What I am saying is that I want to seize the opportunity give something to God when it actually costs me something. For me right now, this is faith.

October 15, 2010

One in Beijing

Well, in a very quick and unexpected turn of events, James left early Thursday morning for Beijing while the boys and I have stayed home in Winnipeg. He has gone to wrap up some of the loose ends of our lives there. In the days leading up, I was truly dreading his trip for a number of reasons:
1) I want to be there
2) Call me a wimp, but loved ones on planes always makes me a bit nervous
3) In all that has happened the last few months, James has been the only consistent variable for me (Other than God of course, but you've all heard my ups and downs. Sometimes God feels very far away.)

But the funny thing is that whenever James travels, I find it is easier to have him gone than to prepare for him to leave. When he is gone I have the simple choice of either making the best of it or being miserable. I generally don't like being miserable. So this has left he boys and I to our own devices. Part of the time will/has been spent at home with my sister and part of the time will be staying with my parents.

In the last few days I have finally come off of all medications except for the anti-seizure, the most significant of which is a steroid. This steroid has been the bane of my existence for the last several months. It promotes weight gain, causes your body to retain water (lending a puffy appearance), causes mood changes, causes acne and muscular decline and much more. In the few days since I have been off of it, I have been noticing some significant changes, such as:

1) The shape of my face is starting to re-emerge from under all the acne and swelling
2) My clothes are fitting a little better
3) I've noticed an increase in mental capabilities. Instead of being content to sit, I find myself looking for mental and physical stimulation. At the end of the day, I want to know that I did something.

The third one is interesting, because only now that it is leaving do I realize just how numb I have been to my surroundings. I'm not sure which is worse; sitting and staring into space for hours or being okay with it. I'm not claiming a complete recovery, since I might very well return to my numb state, but I have noticed a significant (and much appreciated) difference in the last few days.

Of course there are other parts of my physical condition which seem to be permanent losses. One major casualty is my eyes. They are so blurry! And of course my right ear which still rumbles constantly, occasionally switching to a high pitched whine.

The boys have been doing very well. Ari's teacher tells me that he is picking up French very fast. Speaking of hearing problems, we suspect that Ari is suffering from some serious wax build up in his ears. I used to have that problem as a kid, and Ari can't ever hear a word we say to him. His response to everything we say is to yell at top volume, "WHAT?". He is also always yelling and it is getting worse these days. I am well acquainted with the treatment and equipment used to solve this problem - I had it done many times when I was young.

Ari's hearing "disability" has made communication with him interesting. Last week just before our Canadian Thanksgiving, I told Ari all about the Pilgrims being saved by the Indians and the story behind Thanksgiving. Well, combined with his great love for Peter Pan, Ari has now developed a deep fascination for Indians. On a side-note, I apologize if anyone is offended the use of the term Indian, but in a historical context and when teaching a five year old, it is the only term that makes sense to use and is relatable to him.

So anyway, today when I picked Ari up from school, he asked
me to tell him more about the Indians and how they lived. I of course was very enthusiastic to tell him about the different nomadic and agricultural groups, how to make birch bark canoes, how to make pemmican, how they hunted buffalo, and how they used all the different parts of the buffalo. The trouble was that for every sentence, Ari would interrupt me with a "WHAT?", and I would have to yell out the sentence again. Our whole neighborhood now knows how to make a birch bark canoe and how to make pemmican.

This evening the boys watched the movie Hook, and I think we have found a new favorite. Jude cuddled with me and decided at the end that when he grows up he wants to be Captain Hook (naturally). Ari on the other hand could hardly sit still and couldn't bear the suspense, constantly asking plot ruining questions. When I put him to bed he was still seriously pondering the implications of the movie and trying to fit together all the pieces of Peter Pan the cartoon and this new sequel. Of his more interesting questions were:

"In the first movie, Peter Pan tells Wendy that if she grows up she can never come back. How can Peter come back?"
"How did Wendy become so old if her and Peter were kids at the same time?"

By the way, Hook is also a good movie to watch if you need a reminder as a parent to lighten up a little. Robin Williams manages to make some clasic parent lines sound like such spirit breakers. Such as, "What did I tell you about blowing bubbles in your chocolate milk!" Watching it with them certainly made me realize how many of the things I say to the boys must sound pointlessly jerky.

Anyway, there are some random bits for you. Time for bed!

October 12, 2010

Soil

You walk on it, vacuum it out of your rug, blow it out of your nose on a windy day, and rely on it to remain alive.

Yes, soil, that four-letter word. No surprise to find that James is writing this post, and not Jessica (although I've persuaded her that soil is actually interesting).

I really like soil, with all of its complexities. I won't get into any of them here, or I may lose this audience faster than topsoil in a windstorm. However, I just wanted to bring up the subject, and perhaps get you thinking for a moment about how incredible it is that soil exists! A community under our feet.

Feel inspired yet? Go stick your nose in a garden! You won't regret it.

(And for any palm readers out there, yes, that is my hand.)

October 07, 2010

Killing Two Birds with One Stone

As things have slowed into a sort of pace and living with a Krang in my brain becomes a fact of life that only occasionally hits me in the face, I find that I have less dramatic processing to do. I am still weighted down by sudden realizations of the implications to my life, but by and large, it has become a fact of life. The lessons that I am learning these days have far more to do with how to live my life with this new complication: attitudes, approaches, etc. These develop more slowly and are not as easily bloggable as have been the last three months of "crisis" moments.

Nonetheless, I have had a new idea for what to blog about. Writing "memoirs" sounds like a very lofty thing to do, but what I have in mind is just to process my life as it slowly flashes before my eyes here on the blog. Not chronological, not planned, not complete and (believe it or not) NOT in preparation for death.

I know that it could seem vain to assume that anyone really wants to hear about my life, but truthfully I have not understood why anyone is interested in what I have been writing anyway. Mostly I want to do it because I am a reflective person. Quite naturally, the threat of death would make most reflective people think about their life, and I find the the best way for me to reflect is to write. Interestingly, half of the "life" I will be reflecting on are the things that have never happened, like all the wild and sometimes unrealistic things that James and I have talked about doing together. I will continue to write about our present journey, but since it is happening slower now then before, these will be less frequent.

James is well settled into his Master's Program at the U of M and loving almost every minute of it. At some point I will get him to write about it on here so that you can also know what he is doing. My summary would fall sadly short.

It is certainly a lot of work. He reads his requisite 5000 pages of readings and then summarizes the topics for me over a number of conversations. I really enjoy this. It would be very easy for me to feel like I live in a small limited house while James lives primarily in the big wide world and comes home to sleep. I have had to avoid this train of thought, because then it would be easy for me to turn into a guilt tripping wife who is always pestering her husband to "come home". I don't want to be the kind of wife who nags her husband for attention. I want to be inviting, so that he wants to spend time with me. Thankfully for us, I find all the things that he reads about for his classes extremely interesting. It would be much harder if he was studying anything related to Math. We have always had very similar scholastic interests. This leads us to our first "reflection".

Over the course of studying for our undergraduate degrees, we discovered that we had chosen very complementary fields: James in agriculture, and me in nutrition. We started out thinking that we were in two totally different areas. In our first years I would be learning about vitamins, nutrition education and food chemistry while James studied about soil science, crop rotation and production quotas. However, as time went by we gradually realized that both of us had far more interest in the social and international implications of our degrees than in the latest scientific research. For those of you who don't know me, I have very little interest in the supplement aisle. I am a hearty proponent of a well-rounded diet (in all parts of the world) and have limited interest in supplementation of Coenzyme Q or fill-in-the-blank vegetable extract.

How many hours we spent reading about and discussing the food supply chain, the various "sell outs" in our fields, topics in development and international programming we'll never know. Whatever the case, there were many nights where we fell asleep exchanging thoughts on these various topics. This was only the beginning of more common interests. I have recently been reading a book by Jared Diamond called Collapse outlining how various societies through history have dealt with the social, economic and ecological problems facing them. It has sparked many an interesting discussion between James and I. Let me point out that these have been points of shared learning for us and expanding our knowledge base, rather than "solving the world's problems".

On a side note, I would be very quick to recommend Jared Diamond's writing. He is better known for his best-selling work, Guns, Germs and Steel. He managed to arouse my interest in the current economic and ecological challenges that are facing Montana, something that I can guarantee you I had never thought of before.

And with that somewhat random thought, I end my blogpost. The only medical update I have is that I will be going in for another MRI on Oct 22 at which point my oncologist and other neurologists will determine what the impact of my six weeks of treatment was. After that we establish a new baseline and plan from there. I will not know any of these outcomes until I see my oncologist on Oct 29.

Farewell