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.
Sun.
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.
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
Thursday, July 22, 2010
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.
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.
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