Finding Hope, Redemption, Courage... from Cancer

"(At one time) my future seemed to stretch out before me like a straight road. I thought I could see along it for many a milestone. Now there is a bend in it. I don't know what lies around the bend, but I'm going to believe that the best does. It has a fascination of its own, that bend." - Lucy Maud Montgomery, Anne of Green Gables

Friday, December 17, 2010

David (Christmas Family Update #3)

My apologies to those who've received Christmas cards, checked the blog, and thought... cute kids, but what's going on with their parents?? =) It's been very very busy this last week of school before Christmas... Noelle came down with pneumonia this week and I'm on my third of four nights right now... no, I don't usually do that! But this way I get 11 days off for Christmas!

This was David's fourth year working at Baywest Management, a strata management company based out of Vancouver, Surrey, and Abbotsford. This past year he got promoted from an Infomation Systems Developer to Applications Development Manager, which basically means he has a couple of programmers working for him as he imagines new ways of streamlining business processes for the strata managers, accountants and administration at Baywest. He says he has the perfect job for him and especially enjoys working with the other IT guys.

One of the changes he's gone through this year is a change from working every day in Abbotsford to working 3-4 days a week in Surrey. The IT guys now share an open office to brainstorm ideas more effectively and be more available for the Surrey staff. Unfortunately this has meant a much longer commute on most days, but his co-workers have been flexible with him constant construction he battles on his way to work. He enjoys the occasional day in Vancouver riding the West Coast Express and loves it! We both wish that train was able to run more often!

This year also led to a church change for our family. We love (and miss terribly!) the family environment we had at the Vineyard, but felt it was time to change. After several months of checking out other churches, we've settled at Northview. One of Noelle's friends from school invited her and we all love it there.

We enjoyed some family trips as well. In January we visited Maui for my cousin's wedding. SO beautiful. If we can ever afford to go back, we certainly will. In August we ventured to Okotoks to visit my brother and his family. Every year Alberta grows on me. I'm still a west coast girl but David and I sure enjoy the peace out there. It's such a quiet, restoring vacation. And the girls, of course, love their cousins.

I know I've said this before, but I think I'm one of the luckiest wives on the planet. Our marriage is not perfect but very, very happy. Neither of us is content to let the other person stay in their ruts, and I think it makes us better people than we would be on our own. My husband also is one of the most involved dads that I know and we all depend on him a great deal. He handles his family - and work - responsibilities with grace and humour and we are all very, very grateful for him.

Wednesday, December 1, 2010

Oh Dentist-ree

Okay, sorry, that was lame. Just a quick update re: medical stuff...

I went to get the "big" blood test - the one for the philadelphia chromosome levels in my body - on Monday. Unfortunately it takes about six weeks to get these results, so I won't know until my doctor's appointment in the new year, which is scheduled for January 6th. We'd appreciate prayers for the chromosome level to be below the -3 mark (the 'magic' number for my condition to be considered 'safe.') when we get the results, or at least for the numbers to be continually going down (the last level was -2.29, so we're somewhat close).

Then, I must admit, something incredibly moronic happened. No, okay, I did something really really dumb. You guys all know I'm a huge fan of hockey, right? I've always thought that broken teeth was a part of hockey and if that ended up happening to me, I'd consider it a war wound. Well, last weekend, while WATCHING hockey and drinking coffee... Elliana ran up behind me and grabbed my legs, yelling enthusiastically, "Mommy!!" and I was just about to take a sip of coffee and instead of putting the mug down when I sensed her coming, I just kept it there. Yeah. Its one of those mondo-sized cups (that's the only way I do things, being a young mom and on chemo leaves me a definite caffeine addict or nothing would get done around my house - ever!) and I heard this CLANG as it hit my two front teeth.

I didn't think too much of it at first - I'd been bumped there before, the first time as a five year old on a trampoline and my three-year-old friend bounced up and his head connected with my two front teeth... I guess the tooth was a bit weaker this time around, so it actually has cracked both teeth. Yes, that's right, a coffee mug has damaged my two front teeth. Pretty badly, I must say.

So, hence the title, today I go to the dentist and discover that my dumb coffee sip will cost a significant amount of time in the dentist chair, perhaps even oral surgery (yum). In the realm of things, better than I expected, but...yeah. This could have been so much better if I was really an athlete and got my tooth punched out in a fight or something... REAL.

Anyhow... we're waiting for a few days to see exactly what the treatment will be - its possible this tooth could heal partially on its own so it needs less invasive surgery than we thought - and I guess I'd like you guys to pray that the teeth get the exact treatment they need (things are tricky with my leukemia medications) and that the damage doesn't further between now the treatment (perhaps even improve?!), and that I get used to eating soup and smoothies for awhile... and I guess that God provides for this really dumb mistake of mine! (which, considering that the BC Cancer Agency covers the $50,000/year cost of Sprycel, this isn't too bad at all, thank God for that!). Most importantly, pray that I don't freak out. I think that's my biggest weakness is absolutely freaking out when there's always something that can come around the corner to change things.

Okay, gotta run clean this place... again.... thanks again for caring enough to even check what's going on with us!! We love you guys and hope you are having a very, very good December 1st!

Monday, November 22, 2010

Noelle (Family Christmas Update #2)

Here is our extremely talented creative girl, who unique view of the world consistently provides fresh perspective for those around her. She is thoughtful and enthusiastic, passionate about the things she likes (music, dance, art, school!) and those she loves (mom, dad, elliana, her friends at school, grandma, grandma's dog walter, the cousins... probably in reverse order to what I've put here!) Everything she does is whole-hearted and full of laughter and FUN!

I remember my mom telling me that she was pretty sure I had her and dad figured out by the time I was 18 months, standing up to them and pointing out the things they were doing that was inconsistent with what I'd been taught. Well, this apple certainly does not fall far from the tree. She is quick to see what her mom and dad do wrong and does not tolerate any quick dismissals of our behaviour. And though it can drive us crazy, I really love that Noelle has such a strong sense of self. I know that she won't easily be swayed by other people's opinions. She tests things out for herself.

She's also very aware of what she's feeling and doesn't hesitate to tell us. It makes for some lengthy discussions at times as we work through how to process those feelings, but when we get tired we find ourselves encouraged by writers like Dr. Haim Ginott (Between Parent and Child), Adele Faber (Siblings without Rivalry) and Dr. Sears, as well as Daniel Goleman's "Emotional Intelligence," that the effort we're putting in here will one day pay off. Let's hope they're all right!

Noelle is a natural care-taker. She shows compassion for those around her and values equality and justice. She loves learning how to help other people be good friends as she learns to be a good friend herself at work. She's the girl who will look at me and say, 'mom, are you ok? can I bring you a glass of water?'

Noelle is a well-rounded girl who loves a lot of things and wishes she had more time and energy to do all of them - okay, probably wishes her parents had more energy to let her do them!!! She especially would like to play hockey and basketball... but maybe another year, we said. Let's stick with music and dance this year.

As a reward for her piano practicing, as well as for trying new foods and doing her chores, Noelle asked to work for a "hockey buddy jersey." Yeah, I wasn't sure what she meant right away either. Last Christmas David got me a Ryan Kesler jersey, so for his birthday I returned the favor and got him an Alex Burrows one. Noelle told me last week as we watched the game that she wanted to have a "hockey buddy" just like us, and when I asked her to pick who she wanted, she deliberated a long time before picking #33. Not bad, Noelle. Fitting of course, that the true captain and award winner of this house would pick the captain and award winner of the Canucks (though he's not playing like it this week. Yikes). Her sister is also earning her own jersey - though her stickers are for successful potty training days instead of piano and chores. Noelle picked #22 for her. Wouldn't my grandpa laugh to see these girls wear the jerseys of the two players he loved to call the "sisters"!! I can hear him laugh right now. Anyhow, I think Noelle thinks if you put the jersey on then you're as good a player as that person, and they're like your "buddy." That girl just makes me smile.

The best - and hardest - part of Noelle's year has been adjusting to school. She's learning to follow verbal commands and working with a speech pathologist/school counselor to develop further confidence and decreased response time in the classroom. She absolutely loves her classmates and teacher and absolutely hates missing school. She's made a few friends there who she values very dearly and even with a high fever, chills, shakes and thick cough today she cried when I said she needed to stay home and rest.

This weekend my first baby turns five. But she's no longer a baby - far from it. Where did that time go?

Sunday, November 21, 2010

Elliana (Christmas Family Update #1)

We have a fabulous family photographer. She knows how to capture our children at their most charming. Yes, Joanne, you know we love you! Though, really, in this case the subject also helps. Elliana always seems to know how to behave in front of a camera. I remember two years ago, taking our first pictures of a family of four, we were all surprised at how photogenic our four-month-old baby was. I guess it was just a sign of what was to come.

For a mom who's spent more time sick at home than most do, I feel incredibly blessed to have Elliana with me. I remember a woman I really looked up to at one of our previous churches told me how her oldest daughter was the perfect personality to comfort her during a sad time of her life. Elliana reminds me a lot of what that woman told me. She really embodies joy and peace, and really embraces the abundance her little life offers. When you need to be picked up, she will run to give you a hug - well, also because she just LOVES being hugged, held, and cuddled. This is convenient - she's our last baby so we appreciate this. Uh, well, most of the time. Sometimes I do wonder what her kindergarten teacher will say when she asks to sit on her lap instead of at her desk! =) But we have a few years there...

Elliana had a difficult time when I first got sick. She had just turned eight months old and the medications I had to take forced me to wean her really abruptly, and sometimes I wonder if that's why she likes to hug - and be hugged - so much. She loves her baby dolls and little people - snafoo-ing her sister's little people school bus on a regular basis and saying, 'people, people, how was school today? Did you have fun?' She likes to put blankets on her dolls and kiss them good night - several times a day, while they sleep on our living room floor.

She loves her big sister, but doesn't seem to miss her too much while she's in school. I think it's because she gets to use her toys then. =)

The big news of course is that she is now potty training - an exciting prospect in a house who knows we won't have more babies. The thought of a diaper free life is thoroughly intoxicating. She decided to train herself, actually - something I'd heard other parents talk about but didn't really believe them. I mean, what kid just magically does it? Huh. This one did. Don't get me wrong - there are accidents, several in fact, and we're a long way from being done, but I am very appreciative that this time is so much easier than the first time, especially because its a tricky process when you're carting kids to school, piano, ballet and the dentist.

Anyhow... those of you who don't know my little girl, I hope you get to meet her someday. She is creative, funny, and - though exhausting - brings such a smile to us on a daily basis.

Thursday, November 18, 2010

A Case for Christmas Cards

Every Christmas, it seems there's more and more to do. Ironic that a holiday that should be about inner qualities of peace and joy, by its very over-eventfulness, robs us of those sweet sentiments and prayers for quietness and rest and joy that we send to family and friends.

That is, if you're one of the ones who do Christmas cards.

Every year, I argue with myself. Cards or no cards? Picture or no picture? Should I send the Merry Christmas email that has become more and more popular in a world going for the most responsible environmental stance? Considering the expense, work, and time involved, do I need to do this? Should I scrap it altogether?

For some reason, this tradition has stuck with me from the time I was a child. I'm not sure why, but I have these vivid memories of helping my mom update her address list in her tattered paper address book and checking off the column in the year when we'd finished writing the card. I liked remembering everyone as we went card by card, asking Mom several questions about who those people were and where she met them and how come we don't see them more often. I'm sure she got tired of it.

This year, I went further than usual. Having joined a Stampin Up stamp club this past year, I thought I'd spend the money I'd usually spend on buying cards on supplies to make them.

After all the supplies came, and I started to make them, then I remembered I usually send out 100 cards a year. I think I remembered that on card 16.

I know what you're thinking: you don't really know that many people, right? Surprisingly enough, I do. And though some I don't see anymore, I think about them often. I especially thought of them yesterday as I organized and purged many of the cards given to us over the past decade.

I had expected to throw more of them away than I did.

There were so many Christmas cards, all of them different, some with names inside, others with special notes, some with typed letters, but almost all contained something I didn't expect to value: the sender's very distinct hand-writing.

I know handwriting analysts will psychoanalyze the way each of us slant or crunch or expand our letters and give us all sorts of conditions we never knew we had, but there is something about handwriting that often captures the essence of our memories of that person who wrote it.

I smiled and laughed and cried as I saw the familiar lines of my dad's letters, or my grandparents - all four of whom are now departed, some for almost 15 years - just reading their own letters made me feel like they were with me somehow.

I gasped and sighed when I saw one huge stack of cards I'd kept from my dad's funeral, the sheer volume of people - most of whom I hadn't seen in so many years - who'd bothered to write me a personal card saying they were sorry he was gone and what they remembered about him best. What really stuck out to me was how many of these same people sent cards again that Christmas, recognizing how hard that first Christmas would be after he left.

I had heard others talk about how bittersweet the holidays can be, but I forgot that its partly because so many memories come up of people you wish were at your house drinking apple cider and playing games or watching the snow fall, the ones from whom time or distance or moves or death separates you.

But I realized how important these memories were. And I also realized how poor my own memory is on its own.

I'd forgotten most of these cards or even what some of these people did. I'd forgotten how meaningful and plentiful the cards were the year Noelle was born, three weeks early (she was due Dec 21) but on the only day of snowfall that year. I'd forgotten how many people simply cared, or thought good things about us and our family.

So I didn't throw that many away, but at least they're all in one place now, a box in the newly organized craft room/office.

And next to me sits a box of 100 home-made Christmas cards and 100 pictures to send out whenever I finally get to it. There's time of course. My aunt told me last year I was always the first Christmas card of the season, so I think I can wait a little longer.

But I also think I'm going to enjoy it.

I didn't know the last Christmas I'd have with my dad was 2002, also my first Christmas as a married woman. I didn't know the last Christmas with my beloved fellow hockey fan and Grandfather would be the following year, or that the next Christmas would be my last one before becoming a mother, or that 2008 would be my last Christmas without cancer, or that 2009 would be my last Christmas without the grannie we were all so close to.

I'm glad I kept the cards. Maybe someday, hopefully a long, loooooonnnnng time from now, someone will find an old card with my handwriting on it, and maybe they'll remember that time we did a chinese fire drill in our slippers on the way to Superstore, or the girls trip we did to Disneyland only months before I was pregnant with Noelle, or that random class we had together or those years we worked or attended church together.

Because, really? You can't put a pricetag on that.

Wednesday, November 17, 2010

And we know that suffering produces... hope

I was preparing this morning for the Revelation Precept Study I've been doing with a few other women and stumbled across this part in my Bible that really stood out to me today. For the past few days, I have been praying throughout the day for our friend who is in the hospital awaiting surgery, and it was this verse God brought to my mind as I was praying for him and his wife. He has coped with a relatively unpredictable health problem since he was a child and is on the cusp of seeing a potential elimination of that problem, if the surgery is successful. I would have thought, knowing what I do about him, that he'd be quiet and reserved and very, very careful about life, and yet, knowing him, in his wife's own words, he's actually kind of a daredevil.

That makes me smile.

Can I confess that sometimes perfect people bother me? You know who I'm talking about. There's just some people that seem to have perfect lives. The ones who are exhaustingly busy with jet-setting to the coolest, hottest places? The ones with perfectly behaved children that are each in five activities and won awards in all of them? The ones that have more than enough energy to get their kids to a different play date every day? Or, this is the killer for me - the ones whose facebook statuses are always about how nauseatingly in love they are? Don't get me wrong - I know there's some of you reading this, and please know that I, and the rest of us less-than-perfect-ones love you. We also love our husbands, our less-than-perfect children, and our less-than-perfect lives.

Please also know that I'm willing to bet that, at some point, even these perfect people have experienced pain. I bet that any of them, like us, could pinpoint moments that make us cringe, moments that shadow the rest of our lives, so that when we remember them, we still shake them out of our heads and say, 'let's not go there.' Sometimes they're the result of our own mistakes, other times they were things that happened to us. And no matter how many times we think we've dealt with them, don't we still - at least subconsciously - try to arrange our lives so that pain can't happen again? Sometimes that trauma is so great that an overarching sense carefulness affects every decision we make.

I know that I, at least, have been there, many, many times.

More confession time: I write in my Bible. (Don't tell, they might cite me for irreverence.) When my dad died, I asked mom if I could have his old Bible. It was really well-used, and yet really well-made, and I felt that as I worked through the grief of losing him, maybe the insights of things he'd underlined could help me, almost like he was there.

On November 29, 2004, I marked this one passage in my Bible, that my dad had marked before me: "...we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us...." My red markings in the margin from this date in 2004 say this: "how has suffering done any of this in me?"

It was a fair question to ask then. A lot of things were going well for me. I'd been through some things and come out the other side. I'd recently graduated nursing school, David and I had moved out of my parents' house, we were both gainfully employed and financially independent, we had a tight-knit church family, and several friends, and were living in the place we still call our "favourite" home. To cap it off, we'd celebrated from a month-long vacation.

The point is, I should have been happy. Deeper. Wiser. And yet, I was remarkably NOT.

There were reasons, of course. I'd just seen the second phase of disillusionment with my ideal job (I know, remarkably, not nursing, but a worship ministry position), I was not adjusting to the two days two nights ritual of full time nursing well at ALL, and I desperately missed that supportive, constantly encouraging and appreciative environment I'd enjoyed in my six years and double major at TWU.

I also finally had enough time on my hands to miss my dad.

But all those things that I had been through (and thought I'd conquered), the situations I called "suffering," if they were indeed suffering, and if I was indeed following after God the way I thought I had, why did I not see any of these things (perseverance, character, hope) in me? I didn't have perseverance, for every time something didn't go my way, I would - at least internally - still lose it. And for all the fooling I did myself and others, I didn't really have much true character, either. Character means courage, and around then I was afraid of just about everything, particularly of (gasp) the possibility of more suffering.

Oh, and the most glaring deficit... I definitely didn't have hope. I'd started to see myself as one of those people that just has to deal with harder things, that everything about life was going to be hard and troubled and, well, joyless.

So, not much room for hope.

But that night I realized that if I believed the Bible to be true, then this part also had to be true. So, I started to pray for hope. Not so that I would be happy, but so that I could say suffering had done something in me besides bitterness. If I was going to go through all these things, it better actually do something good.

It's been a kind of slow process.

The first thing that changed was that we found out we were going to have Noelle. In fact, her birthday is exactly 364 days after I'd written that note next to Romans 5. Her name means "Good news,"and she certainly has been. Despite all of the ups and downs we experience with our first child - poor guinea pig that she is! - the day she was born, I knew something had changed. I was remarkably happier, and more hopeful, simply by having someone else to concentrate on, and not thinking about my own needs so much.

And then the really tough things came, one after the other. Not just the usual trials of parenting, but other darker, more intense trials. Some threatening my marriage, others, my kids, still others, our family's spiritual well-being. Some of this stuff I don't even like to talk about. Ever.

Probably these were the worst trials of my life, each of them leading up to the concrete shocker - cancer. All of them have come since I've prayed for more hope in my life. But strangely enough, the prayer for hope has been answered, somehow not in spite of the difficulties but because of them. There have been tears since I've gotten sick, and frustration, and continual, utter exhaustion, but so much more hope. Maybe its partly because some of the things I was afraid of happening have happened, and I'm still okay.

It makes me a little more confident to risk. It makes me concentrate on what might be good around the corner instead of bad. And I gotta say, this is a much better way to live.

Now don't for one minute think I am suggesting we not be careful at all. Sometimes pain is there to teach us what situations - or even sometimes, people - to avoid. We aren't called to win everything, to make everything perfect. I think that's what it means when it says suffering produces... character. People with character learn when to risk and when to pull back.

Please let me be one of those people. And let it not stop there. Let character produce hope.

There's another note in my Bible next to that first one about Romans 5:5; this one is from November 28, 2009 - Noelle's fourth birthday, and five years after I originally asked myself that difficult questions. It reads, "He DID do this for me." I know why I wrote this. It's also why we gave our second daughter the name Elliana, which means, God has answered my prayer.

He has given me hope.

So why do I bother to tell you this? Because I think there's more than a few of us who might have questioned that verse before, or at least thought, are you kidding me? Suffering producing hope? Yup. It's the real deal. We don't need to be as scared of suffering as we have been. We don't need to fear that we'll end up as lonely old ladies (or men) with a ten-pound chip on our shoulders, ten cats, three rats, and no friends, all because our hard lives left us as bitter as horseradish (sorry, not a fan of that either).

I'm writing this on a particularly exhausting day. Sorry guys - this running around every day to take kids to school and doctors and dentists and groceries and yadda yadda yadda, the kind of days where you're out allll day, especially when that happens most days, that's for the birds. I am flat out on the couch right now and can barely cope with the idea of getting up to the bathroom. And, we still don't know if the new drug is working. The next set of bloodwork, which I won't have for at least six weeks, will tell us more. Despite all I've just written, we do appreciate your prayers for us, for me particularly, that Sprycel does bring down the cancer chromosome to an acceptable level. That all this exhaustion is doing something tangible.

The reality is, there's no guarantee its going to all get better. But it IS going to be okay. Suffering does produce hope. And hope does not disappoint us.

I believe that now. And it only took cancer to do it. Yikes. Too bad I couldn't learn it sooner.

Monday, October 4, 2010

I don't know

I don't know what this day will bring
Will it be disappointing, or filled with long-for things
I don't know what tomorrow holds
But still I know I can trust Your faithfulness

I haven't listened to Brian Doerksen in a long time. I haven't been able to listen to worship music period in such a long time. The average worship experience in church today is just not what it used to be (ooh, don't I sound so old, already complaining about the good ol' days?). There's just a disconnect for me in so many ways in that area of my relationship with God. But this past week I found this song, connected to Brian's other song, called "Faithful Father," which started going through my head after I discovered a friend of mine had died, that line where it says, 'from the moment my life began, You have been faithful.'

I remember when I first got sick, friends of ours visited from Calgary, brought dinner and prayed over us. I had told them that I had no "grid" to put cancer on - how do you fit "I've got leukemia" into a 28-year-old-mother-of-two-preschool-aged-kids channels of thought without getting seriously derailed on major issues of faith, hope and just... life? I remember later that night my friend Jodi prayed over me and asked God that I would see every single thing on a grid of God's faithfulness. That prayer has echoed in my mind these past eighteen months, growing in fervor, as each step shows even more clearly that He certainly is faithful.

That was no more true than this week. I am so, unbelievably tired. On Monday I had been playing "Your Faithfulness" (quoted above) on the piano when the phone rang. It was Noelle's kindergarten teacher, wanting to share some observations of Noelle's responses in class. It seems that Noelle may have a learning process difficulty, or auditory command process difficulty, of some sort. We are merely speculating here and there will likely be further tests to find out exactly what is the problem. Her teacher is meticulous and cares very much about each student achieving their best, but it was very hard for me to hear that my child might not be doing as well as she needs to. Those of you who went to school with me might understand why. I didn't have that kind of experience at school. It came easily for me. I don't know what to do with this. And the worst part is, really, I have no control over it. I can't be in the classroom with her to help her respond to directions appropriately. I can't coach her through this. This is something she has to do all on her own.

So I asked many of our close friends to pray for her, us, and those involved in her education, that we would all learn what we could do to help her. I must confess that I have spent nearly every conscious moment this last week trying to set up an environment that can make her successful. I know, it sounds kind of insane, but this week all I really cared about was what Noelle needed. So much so, that when I went to the oncologist on Tuesday and my next philadelphia chromosome test results were back with not great news - not terrible either - I barely cared. Really. Apparently there has been some minimal improvement in my philadelphia chromosome count, and it was really only a month into Sprycel treatment, so there's no need to panic or anything. He just said, let's wait till December and see what it says then. Me, so tired and sleep-deprived at the time, just asked him straight out: and then what? What if it doesn't work then? He looked uncomfortable for a moment - I don't think he's the type to give false hope to anyone, even someone as young as me - and he said, well.... maybe, we.... well, we could probably live with it. I laughed out loud and said, do you mean that literally? Like could I, literally, live with it? Which made him laugh out loud, and believe me, this guy doesn't laugh much. And he said, sure, you know, I think you could. That really is the bottom line, isn't it?

We left the office laughing and shaking our heads. I had just had this conversation with David's Grandpa - who unfortunately has cancer as well - about how many unknowns cancer brings to life. It's kind of hard to plan your life around something that could take you at any time, that could surprise you with something new just around the corner. We don't know how each day is going to go, sometimes each moment.

We just don't know what's coming. At. All.

But David and I - on hearing this news of "you could probably live with it" - we laughed. Both of us! Some of my friends asked, why on earth did you laugh at that? And deep down I knew its that I'm living out in a very concrete way what is ultimately the reality for all of us, in that we just, don't know. There are no guarantees anymore. Anything can happen.

This is not easy for me. I'm a planner. You all know it. But this is totally God in my life. He has gotten my attention. He is focusing me. I have always needed this, this focus, this bigger-than-life problem that shakes out who I really want to be and what I really want to do. We often spend so much of our lives in tomorrow that we totally miss today. This situation with Noelle - with her transition to school - is the same way. It's focusing me to pray continually, searching for insight into what God has planned for my child, and then doing what she needs me to do that day. And the next day after that. After all, when I first got sick and asked God to make me well, I told Him that I wasn't really worried about me so much, but about my kids. They need a mom to help them grow up, and yet I spent much of this last year not focused on them like I should have been. He's keeping me to my promise. Them first. Then me.

And this is causing radical changes in my life. I'm starting to study my kids to see who they actually are, not who I thought they would be. I always knew Noelle had an artistic bent, but I didn't want to force a love of arts on my child. So, I took her out of ballet this year so she wouldn't be overwhelmed with school, piano and dance. And every night since school has started, she has cried and asked us when she could go back to ballet. She even asked one night if we could have her ballet teacher over for dinner. And we don't know her that well! So I made a plea to her dance school to let us back in, knowing she may never be a dancing star, praying that she does it well enough to keep going, because all of a sudden, I see such a release in my girl. She's smiling again, she's less stressed about school. She begs to practice piano, hugging me after we finish practicing, proud of herself. I guess she is a little right-brained artist -type after all.

This thing is also making me a morning person. No, not seriously. That will never happen. But I'm forcing myself to do what my kids need me to do. For example, this morning we tried a new (well, sort of old) church at the 9 am service. Why? Because Noelle has a friend in that Sunday school class and wanted to see her. Turns out even though she didn't see that friend, it was the best move for the whole family. And there's some benefits to early mornings, right? (I'm not seeing that right now, of course, as I frantically try to get a blog post finished at midnight! =)

It's also making me a pseudo-extrovert. I am a girl that desperately, frantically craves alone time and just time to think and be by myself, or with my Bible, or reading a book, or (cough) working on that novel I dreamed of writing since I was ten years old (yup, Erin, I guess I never got rid of those artsy-daydreamer tendencies!), and yet my life is filled with so many people, so much talking, so much NOT alone time. And that's what my kids need from me, for me to know their friends, to invest in relationships with their families, to take them to church as much as I can, to invest in relationships with their teachers. Its overwhelming for me, and I'm not getting the down time or the sleep that I crave but I know its exactly where I'm supposed to be. And if that's the case, God will not forget me. He will keep me right in the palm of His hand. Really, where would I rather be?

On a side note, I do pray for sleep. And soon. So, to conclude my ramblings for tonight...

All through this week, despite emotional and mental and physical exhaustion, I look back and every single step showed me how God is leading us to be exactly where we should be. I told David tonight, I know I'll have those moments where I sit and think about dying and what all that might mean and how I might go before those around me, and yet really, that could be such a huge waste of time. I've had lots of those moments, and everyone needs those, and I'm sure I'll need more in the future. But really, if I don't know how much time I've got, then its about time to start using that time. No, not to take on some crazy-huge project that has no meaning. Not to do more, but to be more, to intentionally build more into the lives of those around me.

Really, what better legacy is there than that?

I don't know how or when I'll die
Will it be a thief, or will I have the chance to say goodbye?
No, I don't know, what the future holds
Still I know I can trust Your faithfulness

Wednesday, August 4, 2010

Embracing the Unresolved

I wish I had news for you all. I don't. I have no idea how things are going except that my blood work is "good." We won't know for a few months if Sprycel is doing any more than Gleevec did. And the waiting, oh the waiting. It's hard. I've often prayed for patience, but I tend not to have the strength to wade through the things that will make me patient.

David and I are in the middle of a Fringe-a-thon, thanks to our growing addiction to all things written or created by J.J. Abrams (yes, this guy actually made me enjoy a Star Trek movie). And last night, I don't really remember what the episode was about but I do remember Olivia saying to Peter, "haven't you ever lived with something unresolved and wished there was something you could do about it?" And he rolls his eyes and says, "congratulations, you've just described the entire planet."

I began to think about how much we tend to hate tension. I'm not a big fan of it myself. I like things tied up in nice, neat packages. I wish that all the things that have been left hanging in my life would just work themselves out. I don't know if that's me, or everyone, but in any case, God has a sense of humor, because the last five or ten years have brought so many things that are still not yet resolved. Relationships, situations, losses, life changes... so many things that have left me asking, seriously, how did I get here?

Lately I've been reading about gene therapy, which holds such amazing possibilities. Imagine if we could just test everyone who has genetic predisposition to disease of any kind and then replace those faulty genes with healthy ones? The Human Genome Project was launched in 1990 with just this eventual goal, that one day perhaps gene therapy would replace pharmacology, that we would eventually not just treat the symptoms of disease but eradicate it at its very source.

But the reality is, it hasn't worked, mostly because we can't find a way to inject the healthy genes without giving new disease to the people we "treat." In fact, one of the consent forms for a lot of these experimental trials states clearly that anyone who goes under this process will be at much higher risk for cancer in the future, since their DNA will be altered. And some people have even died as a result of the treatment. So here we have this idea, even the technology, to theoretically eliminate the source of so much pain for the world, and yet, its been failing for the last 20 years. Why?

I don't know exactly, and the Human Genome Project has done a lot of good, in fact, I have this project to thank for some of the research behind Gleevec and its second generation drug, Sprycel, which has prolonged my life and has the potential to even cure it. But so far, I'm not cured. And so many of my faith-based friends have asked me, why do you think God lets you live with cancer? I really don't know, but I know that it keeps me in that tension that I hate so much. It keeps me wondering what's coming next and when it will be over, and if I'll ever be "normal" again.

Then, last night, it occurred to me that perhaps I AM normal. Maybe this tension IS normal. We don't like it, and we're constantly looking for ways to fix it, but as soon as we do, instead of getting the smooth sailing we expect, most often something else follows that is even harder. And sometimes, what follows is a direct result of the resolution of the previous problem.

Even if gene therapy was one day truly and universally successful, I wouldn't be surprised if this success simply brought a host of new problems. They've already had to pass a law in the United States in the past few years to protect people who've had genetic testing done from discrimination in regards to employment and health insurance. Who knows what else might be used against us if we knew every thing about ourselves and everything that might eventually happen to us? What would happen to people in a world that not only hoped for the absence of bad things, but actually expected it? Can we live with the expectation of perfection? Of only good, nothing bad? We just might destroy ourselves or each other with this kind of power. We might bring a lot of good, too, but I've noticed that everything good in my life has also brought its own challenges. Take children, for example. Such a blessing, but such a challenge.

And what's more, if we could do all this, if we could fix all suffering, would it make us happy? Or would we find new ways to be unhappy?

There's so many things in this life that will never be fully resolved. Perhaps its part of maturing as a human to learn to embrace those things. Some pain is just a part of who we are. We learn to put aside what we are not to keep, and to somehow internally, or personally, resolve the unresolved in our lives. My old college roommate, in her valedictory speech, said something so simple, that we were to embrace the journey that was before us. I think she had something there. I'm being challenged not just to look for the end, to hang on for when it will all be over, but somehow to be okay in the middle of things being NOT okay.

After all, these colorful parts of our lives, the memories of things not yet fully resolved, the things we have hanging in the balance, the imperfections, that's what makes each of us interesting. Beautiful. Unique.

So, I'm still waiting. But its okay.

Thursday, July 22, 2010

That's it, I'm moving to Hawaii

Do I even have to explain why?

Yes, I know you've heard me say this before, but I need to say it again: Hawaii would make everything better. How do I know? Putting aside the amazing smell of island air - just one breath of which, even from the plane, is enough to bring me down ten notches - and forgetting the stunning beauty of the beaches, the soothing repetition of the waves, or the feeling of pure serenity that I have while sipping coffee on the lanai, it really boils down to one thing.


No surprise to any of you out there, of course. I've often suspected that I've been a victim of seasonal affective disorder, just like each of the millions of people living in the lower mainland of B.C. I just didn't know it for sure until these past two weeks of warm sunshine were met with even just partial clouds today. It's not cold, or rainy, and yet I feel absolutely exhausted.

Of course, there are other reasons for that.

Some of you have messaged me to ask how Sprycel is going. Today I went to the doctor to answer that same question from him. Apparently my CBC blood work is good (it will be a few months before we do another MRD analysis). And really, I feel so much better on Sprycel than I did on Gleevec. I am way, way, waaayyy more tired than before, but have far less pain. Somehow the intense bone pain was way more difficult to cope with than fatigue. There's some other exhausting side effects (I won't mention those, because not all of you reading this are my mother or a nurse), and some potential for dangerous side effects (neutropenia, pleural or pericardial effusions - fluid around the lungs or heart), but really, this is much easier to manage than before.

Especially when the sun is out. Drinking my morning coffee on our deck with sunlight warming up my face is just like magic, and I have energy for the rest of my day, for my kids.

But I live in B.C. And I love living in B.C. And I just spent the last two weeks celebrating birthdays, anniversaries, and hey-guess-what-we-actually-have-some-time-together parties with friends and family. My family and friends blessed me with multiple 30th birthday gatherings. My brother and his family came for a week and we laughed so much, little Amy making me laugh so hard my sides hurt. I know I'm dreaming to hope for the past two weeks (weather or otherwise) to continue on a regular basis. Because, really, who gets that?

Unless we moved to Hawaii...

No, I won't kid myself. Even Hawaii gets rain. The rain there is different, of course. It's almost a relief, a breath, and it only lasts ten minutes. And Hawaii doesn't have all of these amazing people that help me keep going - including those of you so good to read this blog - and especially our extended families.

And then, there's one really big thing Hawaii doesn't have...

Free Sprycel.

Walking through the basement halls of Royal Columbian Hospital today at noon, waiting for them to fill my new Sprycel prescription from my oncologist (yes, isn't it lovely that the drugs are kept in the dungeon of the hospital?), David says casually, Did you know Sprycel costs more than Gleevec?

Those of you following my story for awhile know that Gleevec costs upwards of $36,000 USD for a year supply. In Canada, its nearly $50,000. Without the BC Cancer Agency paying for every penny (yes, absolutely amazing, I know), we would be in serious trouble.

And without all the prayers and support of such awesome family and friends, including those of you good enough to read my thoughts here, we would be in even worse trouble.

So, Hawaii would fix everything - except give me the one thing I need to stay alive, while separating us from the one thing we couldn't live without.

That's it, I guess I'm staying here.

Wednesday, July 7, 2010

Day 3

Hey guys.

Not much to update you on, but the past three days have been, well. Hum. It's back to swimming upstream. I miss the energy I had last week. VERY MUCH. Though I suppose having side effects is a good thing, right? It means its working, right?

Yeah, we won't know that for quite awhile, actually.

There's something I heard someone say once, that when you're sick, you know it. You can feel something inside you that doesn't belong. I have definitely felt that over the last 18 months. But I could also tell when I was feeling better. Last October my energy really started to pick up - note: this is when Gleevec stopped killing off as many of the philadelphia chromosomes that it should. As of two days ago, my energy plummetted. I can feel myself fighting something, which I probably should. Cancer shouldn't really be allowed to have a "home" in my body.

But the "war" inside felt eerily familiar - like I cycled back to January 2009. Though, not quite as bad, of course, because this time I don't have to kill off 163,000 unnecessary white blood cells. This time, its just a chromosome thing.

Just. Whatever. Our bodies are really made in weird and wonderful ways that I won't ever fully understand.

First blood test is next week. I'll keep you posted.

Monday, July 5, 2010

Welcome to July 5th

As we drove up I-5 yesterday and observed the stunning fireworks by everyone who set them off near the freeway, I was thinking about this day eight years ago when I said to David at our rehearsal dinner, "hey - happy independence day,"and he laughed, saying, "yup, its my last one." You'll have to ask him if he thinks that marriage has made him sacrifice too much of his independence, as he joked about back then, but as I remembered this, I couldn't help wondering if yesterday was my last independence day too, in a way, since today I start taking Sprycel, and if it does its job, the side effects - at least at first - will be much more severe than I have had in about a year.

My second thought, of course, was yikes, I don't have an anniversary present for my funny, smart, and extremely devoted husband - until he confessed the same - and we agreed that for our anniversary, I would give us both a gift by taking the new drugs prescribed for me. He's at work now, though, and I don't like doing something new alone, so I thought, hey I'll write about it and you guys can take it "with" me, ok? So, hang on a second, let me get my weird little white pills, and we'll be on our way.

Okay, done. Swallowed and doused with a glass of water. Welcome to July 5th, and hopefully, my new life.

A quick disclaimer to those of my friends who don't consider themselves religious - I'm at a place where I can't help but talk about faith since its what's holding me together - but I hope that if this kind of thing is not for you, you''ll be patient with me and feel comfortable skipping those parts.

The song of the week for me was one my friend Lisa told me about months ago after their trip to London, where most of the churches sang it - Matt Redman's, "You Alone Can Rescue," which I heard after buying the Passion "Awakening" CD (yes, I'm a passion band fan, a Chris Tomlin fan, and a Watermark fan, and I don't think its a coincidence that you can hear all the same people sing on all of those recordings, because deep down I just wish I could sing like Christy Nockels... but that's a whole other issue!). I bought the CD because my other friend Melanie sent me a link to it when I first heard I wasn't doing as well as expected back in March. And I must admit - I didn't like it right away. This song I'm mentioning I particularly didn't "get"immediately. But as I put it on while painting last weekend, I broke down in tears as they got to the tag part of the song that says,

We lift up our eyes to the Giver of Life

That phrase, repeated over and over in the song, has repeated over and over in my head. Ok, God, I lift up my eyes to the Giver of Life. If this works, its all because of You. If it doesn't, You're still the Giver of Life.

I know it sounds bizarre to say that, but as I told David's Grandpa yesterday as we stopped in to see him, a few weeks ago David commented to me that since I've gotten cancer, everything else in our life has improved for the better, except the fact that I'm sick. Our marriage, our relationship with our kids, our relationship with our families, our relationships with friends... only to name a few things. When we can push through the fear to the heart of things, we actually feel way more peace than we did 18 months ago, a peace that really is more secure than we felt before. Because, as I told Grandpa, yes, this is messing me up quite a bit, but if I am really honest with myself, its kind of fixing me too. It pushes me to go to places, as a person, as a wife, and mother, that I would never have gone before, but that are so much more satisfying... beautiful... secure. Our priorities are different. There is, in many ways, so much more life surrounding us since I've had the threat of death.

Why, I don't really understand, except that I think perhaps we limit God's healing to the physical experience hear on earth. When my dad was dying, so many people around him told him they were sure he was going to be healed, and on the day he died, I realized that though they were so discouraged that they seemed to be wrong, in fact, they were right. The changes in my dad near the end were amazing, powerful, and I really sensed he was going home to a place where he'd never be sick again. He did get his healing, we just didn't get to be there when he was well. Healing is so much more than just physically being without illness. So,

We lift up our eyes to the Giver of Life - No matter what.

Take this past weekend, for example, or what I'd like to call what will hopefully be the 1st Annual Meredith Family 4th of July Weekend at the Beach (somebody, please, come up with a better title than that!). Traveling down on June 30th, Elliana's cough became worse and worse to the point when we arrived in Portland, she could barely breathe. We were up with her through most of the night, sitting in the shower till her lungs calmed down, then down for an hour, then back up. That morning we bit the bullet and took her to a local pediatrician, who of course told me what I had figured out by 5 am- its croup. We drove to the beach expecting a sleepless and stressful weekend. What we did not expect was one of the best family weekends we've ever had. We spent hours playing games (okay, I was knitting at the table while they played, because - yes, family, its been announced, this Christmas is sweater Christmas, so I'm on a deadline!), laughing at funny movies, going to the outlet mall, and having adventures and misadventures flying kites and making sandcastles on the beach. Just to breathe the ocean air is incredible. It reminds me that the world is so huge - the universe even bigger, and I am like this tiny piece of sand on the beach.

Yes, Elliana screamed for an hour on Friday night, thanks to the prednisone pills the doctor prescribed - they can make you extremely irritable - and yes, David and I didn't sleep as much, and yes, I ended up coming back with a nasty sore throat, no doubt courtesy of my sweet two year old coughing all over me, but I can say it was all worth it. The night we stayed up till nearly 1 am (and these are people who like to be up by 5:30 or 6:00!) to play German Bridge is one of my favorite Meredith memories to date. A 2 1/2 hour talk on the beach with my new sister-in-law allowed me to know her a lot better. Shopping for Noelle's uniforms only reminded me that life is fast - I have a kindergartener now! And the hours of walking my cranky baby bonded me more strongly to her and my role as mommy. Pictures will be on Facebook, if it cooperates with me.

So, thirty minutes into Sprycel treatment (yes, it takes a long time to post when you have lost of cries of 'momma, momma'), and I feel okay, I guess. I have opened a can of ginger ale, maybe only in anticipation of what happened the last time I tried a new chemo drug. One thing I am asking people to specifically pray about is that my immune system stays strong - no neutropenia - so I can keep taking care of my kids even when they're sick. Gleevec has been good to me that way, so let's pray Sprycel does its job, but still keeps my white blood counts normal, not high, or low. This weekend proved that other than some time with Grandpa Mike, Elliana doesn't take anyone else when she's sick!

So here we go... welcome to July 5th.

Oh, and happy anniversary, David.

Thursday, June 24, 2010

Our new friend, Sprycel

Hello everyone!

Those of you that want just the "news," scroll down a bit... those of you that care to hear my "ramblings," well... continue on.

May I just say that this past week has really tried my patience? It occurred to me at work the other night, as I was tucking in one of my patients who'd finally gotten an epidural and was able to sleep, that this continual-sometimes-minor-sometimes-major stress of the last 18 months has taken its toll on my emotions. I haven't felt anger, much. I haven't really fought the diagnosis, I haven't been that frustrated. But I realized that night that between the continual, am I sick or am I getting better? Am I living or dying yet? my mind and heart was just plain tired. I'm sure that the ridiculously bad weather we've been having hasn't helped, and since I've been on chemo I haven't been able to "cheat"and use "artificial" sun =0.

So this week of, oh my goodness, my doctor called me at home and said, here, I'll clear my schedule and you tell me when you can come in because I need to talk to you about your test results.... yep, I spent most of my time NOT thinking about it, not letting myself go there, afraid of drowning in worry and what happens to my family if something happens to me, and who would put Noelle's hair in a bun if she still wanted to take ballet lessons, and so.many.other.things. I'm grateful for such truly engaging children and for a husband that I love, respect, and truly connect with... the conversations we've had this week have required such bravery from him, but he didn't flinch at any of my questions, or wonderings, or thoughts, or speculations. Nor did he hesitate to help me laugh when I needed to, which was most of the time. He really deserves much more than an award.

But today, driving home from the doctor's office - though the news was promising, I kept thinking, I just don't want to think about this any more. I'm tired, I'm done, and I need a break from having cancer. I think most people with chronic illnesses or chronic problems of any kind, so let's say that's.... hmm, ALL of us, know what I mean. To get up every morning and try NOT to think about it but think about it enough to help myself get better and to pray about it... may I just say that faith is not only essential right now, it gives you the bravery to mentally embrace what you're going through without letting that THING engulf you? Please, please, many of you reading this need to know: no matter what, don't give up on God. I wasn't thrilled with what He had allowed to happen to me this week, or this year, or this, well, decade. Healing, or no healing, a long life or a short one, I can't imagine a life without faith... there's nothing else that could help me so powerfully.

So this week the old hymn, "Take My Life,"as recorded on the Passion Hymns CD was what kept coming back to me. I would try to ask God to heal me, and every time He'd stop me and change my words from HEAL to SUSTAIN my life. I ask Him to let me live as long as I can so my girls can get as much from me as they can. If healing is in His plan, great. If not, well, I have to let Him do His thing. Some of the words of that song really stuck with me, such as, "... take my moments and my days, let them flow in ceaseless praise... take my will and make it thine, it shall be no longer mine."

As many of you had written me, He was asking me to hold out that which was most precious to me - my life - and let Him have it. So today I felt finally able to do that, buoyed I am sure by the prayers of so many.

And now for the NEWS...

Today, we saw Dr. Noble again. He showed us a graph of the philadelphia chromosome levels in my body over the last 18 months and though my levels are much lower than when I started treatment at the beginning of 2009, it isn't where they want it to be. I am at -2.26, they want at least -3 or less (therefore, a higher negative number). The graph hasn't budged in a year. So, something is not working. He wonders if that's perhaps because I have a more complicated mutation than most people, it involves more chromosomes (three instead of two) and there's an inverted patch in there somewhere too.

So, I am changing drugs from imatinib (Gleevec) to Dasatinib (Sprycel). The good news is there are less side effects with this drug (usually) and we have a 70 % chance that it will work better than Gleevec. However, we don't know if my system will tolerate this drug as well as it has tolerated Gleevec. Its a newer drug with less data but most studies I have read are very promising. It has a much higher chance of totally eradicating the philadelphia chromosome than Gleevec does.

I won't start this new drug until July 5th, as we are going to the Oregon Coast with David's family for the 1st/4th weekend and Dr. Noble didn't want me starting something new in a country where I don't have medical coverage, in case I have serious side effects. We're asking people who pray, to please pray that the drug is effective, that my system (ie. liver, kidneys, heart, lungs) tolerates it, and that the side effects are minimal and I learn to deal with the side effects effectively.

BIG thanks to my friend Sarah who brought us dinner tonight. For the most part, I don't feel that bad physically - I've learned to cope with the bone pain and fatigue (Hint: sunlight and my children's laughter) (Second hint: wear intense sunscreen as Gleevec makes me photosensitive... not sure if Sprycel will do the same, we'll find out!), etc. But emotionally it was amazing to come home to pre-made chicken pot pie. Thank you, friend... you have been with us through many, many adventures (cough, kitchen cabinets, cough...) and we love you.

An even BIGGER thanks to all of you who have emailed, posted comments, called, thought of us, or especially prayed for us. I have found people I knew long ago contacting me to tell me I am on their prayer chain or so-and-so is praying-and-fasting for us this week, and my goodness, you humble me. I really needed the support this week, and I am grateful for each and every one of you.

Ok, enough rambling. I will let you know more as I know more. And though this blog is fairly public, due to the sensitivity of what we're going through, I ask that those of you reading not pass on the address, but direct anyone who wants to follow it to contact us first and we'll give the address. Thanks for understanding.

On a closing note, I know it is really rare for someone my age to have CML, and most
people who deal with CML are like, 60 or even 80, not 30, but I actually kind of feel sorry for those who have this but who don't have little kids at home. I would be so depressed without my girls. They make me smile so much. They don't let me wallow. They say and do such interesting things. They learn SO fast and are interested in EVERYTHING. And they hug me all the time and say, "wuv you, Mommy." So a special thank you, Noelle and Elliana, for always being my "pick me up" team.