Weblog

Monday, 07 September 2009

  • So it's been a while...

    "A" and I have been watching So You Think You Can Dance since arriving in Brisbane 4 weeks ago.  My girlfriend DW raved about this show to me a few months ago, and now I see why she loves it.  "A" and I love it too - the quality of the dancing is really impressive to watch.  And the show became personally relevant to me after I watched this dance about a woman with breast cancer and a friend who supports her through it. (My only criticism of the dance would be that they didn't use the original Kate Bush version of the song, which has been a personal favorite of mine ever since it came out on the Felicity soundtrack years ago.) Unfortunately, the longer versions of the clip are no longer available on Youtube, but they were part of what made the dance for me - hearing the judges' reactions to the dance, the fact that the dance was a springboard to open up conversation about dealing with cancer.

    Yes, the fatigue made it difficult to write, but that's not the real reason why I took a hiatus from blogging.  The past few months I've felt really messy internally, and I'm better at reflecting on things after the fact rather than trying to express the inexpressible while I'm in the middle of it.  Perhaps the words from the Kate Bush song can express the past few months better than I can:

    Pray God you can cope.
    I stand outside this woman's work,
    This woman's world.
    Ooh, it's hard on the man,
    Now his part is over.
    Now starts the craft of the Father.

    I know you have a little life in you yet.
    I know you have a lot of strength left.
    I know you have a little life in you yet.
    I know you have a lot of strength left.

    I should be crying, but I just can't let it show.
    I should be hoping, but I can't stop thinking

    Of all the things I should've said,
    That I never said.
    All the things we should've done,
    That we never did.
    All the things I should've given,
    But I didn't.

    Oh, darling, make it go,
    Make it go away.

    Give me these moments back.
    Give them back to me.
    Give me that little kiss.
    Give me your hand.

    (I know you have a little life in you yet.
    I know you have a lot of strength left.
    I know you have a little life in you yet.
    I know you have a lot of strength left.)

    I should be crying, but I just can't let it show.
    I should be hoping, but I can't stop thinking

    Of all the things we should've said,
    That were never said.
    All the things we should've done,
    That we never did.
    All the things that you needed from me.
    All the things that you wanted for me.
    All the things that I should've given,
    But I didn't.

    Oh, darling, make it go away.
    Just make it go away now.

    This past year and a half, I've paused a few times to marvel at the wonder of the human condition.  The joy and the pain, the emotional intensity of the ups and downs of life, the longing and desire for that which we can never fully attain in this life.  It's beautiful and amazing and wonderful and frustrating, all at the same time.  I can see how it's all part of the design of a God who allows our hearts to be broken in the hope that we will bring them back to him for healing.  But still, when you're in the middle of a big ugly-looking knot, sometimes you forget that on the other side of the canvas is a beautiful tapestry, the tapestry that God is weaving out of your life.

    It's been interesting and exciting to see how I've blossomed and come out of my shell since moving to Victoria seven years ago.  But this past year, I've felt myself drawing back into the shell.  Partly so that I could lick my wounds in the privacy of my shell.  Partly because it's not often that I get the chance to share what I'm going through with someone who's able or willing to see past their knowledge of reality to my current one.  I'm so grateful for those like everymystic who have been Jesus' hands and feet to me, for those like my cousin JW who encouraged me to keep having the courage to share what I'm going through, and for those like myshkin who have understood why I've struggled spiritually through this.  Because this past year and a half, while it brought signs of God's presence and grace in new and unexpected ways, also tested my faith in some areas.  It took me a long time to acknowledge that.  It wasn't until I went to church camp back in May that I was able to acknowledge that to myself as well as others.

    So that's the real reason I haven't been blogging.  Because the first question I always ask myself when I start blogging is, "where is God in the midst of all this?"  And I didn't know the answer, or I wasn't ready for the answer until recently.  I admire "A"'s strength in staying with me through this time - I've been weepy and emotional and hypersensitive, well, ever since I've been diagnosed, but especially the past few weeks as things have been coming to a head.

    I'm getting quite tired - writing this post has taken more out of me than I expected - but I'll end with a few quotes from my journal over the past few weeks:

    'God, thank you that you are a God who embraces us in our hurts and wounds but who also invites us to move beyond our pain into your joy.'

    '"A" and I were talking... it was the same conversation that I had with my small group and with myshkin: basically, does it matter whether God gives us trials and hardships or allows them to happen?  Usually I don't get caught up in small theological details because I'm aware that there's so much we don't know and won't know until we get to heaven.  But this detail matters a lot to me personally because it speaks to the character of God.  When people say "does it matter?", they're thinking of things like not having a job or being single, and I suppose in cases like that, it doesn't matter so much whether God caused it to happen or allowed it happen.  But when it comes to having breast cancer, it's very important to me to think of God allowing it to happen versus God causing it to happen.  I don't believe that God deliberately gave me breast cancer.  The more I talk about it and think about it, the more I'm convinced that it's not in his nature.  Yes, he allows trials to come to us, knowing that they will help build character and patience and a whole host of other godly qualities, but he's not malicious or mean.  I think of what Jesus said in Matthew 7:9-11 and Luke 11:11-13.  As he points out, no loving parent would deliberately put their child through a painful trial, but they might let their child go through something, knowing that it will teach them a valuable lesson.  And God, being our loving Father, is no different.'

    'I keep going back to how lonely and in pain and abandoned I felt at times when I was on chemo, and wondering where God was at those moments, but I think what I need to remember is that while I didn't feel like God was there, the fact is that he was there and that he loves me and is on my side.  And the fact is that I have an amazing story - I can see the threads of God woven throughout the fabric of my life... The more I cry about those lonely moments when I was on chemo, the more they become not just tears of sadness, but tears of healing and tears of amazement at how much God loves me and how he's given me such an amazing story.'

    P.S. Thanks so much to all of you who have been praying for me this past year and a half.  I know a lot of you worry about what I've been going through - I'm sure it must be very scary to hear about all the difficult emotions I've been experiencing - but don't worry, I can see the light at the end of the tunnel and I know that God loves me.  And as long as I keep focusing on that, I'll get through OK.

    Edit October 5, 2009: The video I embedded is no longer available on Youtube, but thanks to everymystic who found the longer version of the video for me.

Tuesday, 23 June 2009

  • Walking wounded

    Thanks, everymystic, for encouraging me to keep blogging.  I guess it's time to churn out a couple of posts that I've left sitting on the back burner.

    I've been reading up on cancer and fatigue:

    Fatigue means tiredness and lack of energy.  You feel as if you can't do things at your normal pace.  We all feel this at times - maybe when we are working too hard, worrying about something or just doing too much partying!  Not eating properly or taking too little exercise can make it worse.  With this type of fatigue, your body is letting you know that you are overdoing it.  The tiredness is usually short term and you feel better after you stop and rest.

    Fatigue for people with cancer can be very different.  The cancer or its treatment may make you feel very tired.  The tiredness may not go away even when you rest.  It can go on for weeks, months or even years after you finish treatment.  This is called 'chronic fatigue', which means long lasting.  Most people get back to their normal energy levels from between 6 months to a year after the end of cancer treatment.  But it can take longer.

    Fatigue is very common in people with cancer.  It can be the most troubling symptom.  It affects between 7 and 9 out of every 10 people (70 to 90%).  Many people with cancer say that it is the most disruptive side effect of all....

    Fatigue can be very frustrating.  You and your relatives may underestimate how much it can affect daily life.  Fatigue can affect you mentally, physically, emotionally and spiritually.  Doctors may overlook fatigue, leaving you to feel that you've been left to cope alone.   Everyday life can be hard work and you may not have the energy to cook, clean, bathe or go shopping.  You may not even feel up to a chat.

    All this can affect the way you feel about yourself and your relationships with other people.  You may feel very down and not want to go out or be with people.  This may be hard for them to understand.

    You may have to stop work or cut down your hours because of fatigue.  This may affect how much money you have.  In one study up to 8 out of 10 people who worked before they had cancer had to give up or change their hours due to fatigue.  All this adds up to a lot of worry, and can add to the fatigue.

    In a survey in the UK, over 9 out of 10 people with cancer (90%) said fatigue stopped them leading a normal life.  People with cancer have described their fatigue as
    • Unusual   
    • Excessive   
    • A whole body experience   
    • Unrelated to how much or how little they do   
    • Not helped by rest or sleep   
    • Unbelievable
    ...You are not imagining your cancer fatigue.  It is very real and can have a big impact on your life.

    I know I've talked about the fatigue before, but as it's hard to explain and hard to understand, and because it's the main symptom that's still affecting me, I thought I would elaborate a bit.

    The physios at work sometimes refer to autistic children as "the walking wounded."  Basically, they have a disability but it's invisible, that is until they do something unusual.  And so people label them as "weird" instead of understanding that they have a disability.  It's not like they're in a wheelchair or a walker that clearly marks them as a person with a disability.  I feel like cancer patients are also part of "the walking wounded," because you still look the same (other than the hair, and even then people don't know for sure) and people have no idea what you're going through.  The one time I took the bus home from chemo with my mom, she let me sit down because there weren't enough seats for the both of us.  And the middle-aged woman sitting next to me gave me heck for not letting my mother have the seat. (The girls in support group said I should have ripped off the wig and said, "I have CANCER, OK?" )

    I usually explain it to people using the analogy of energy dollars.  Say the average person has 200 energy dollars to spend in a day.  On a low energy day, they might only have 180, so they've got to budget a little more carefully, but they've still got enough to get them through the day without going into overdraft.  While I was on chemo, I felt like I had 10 to 20 energy dollars a day.  Just barely enough to make it through most days.  I was constantly on the brink of overdraft, and if I went too far into overdraft, the bank would occasionally stop payments for 48 hours (those were the 2-day periods where my entire body was made of lead and I felt a completely exhausted weakness in my core).  So, just like when one is on a tight financial budget, I evaluated everyone and everything based on how much energy they would take out of me.  I tried to find things that would give me energy, but it was hard.  For example, having a good chat with a friend might give me energy, but not if we talked for too long or if the conversation was about something that required a lot of concentration on my part, like the other person's problems or anything involving non-personal facts and numbers.  And how much energy an activity takes out of a person is different for everyone.  I say that Facebook was what got me through chemo because it provided small snippets of social stimulation without draining my energy, but my friends in support group found being on the computer energy-draining and talking on the phone easier energy-wise. 

    Since finishing chemo in December, I've seen my energy dollars slowly climb back up from 50 to 70 to about 100 currently.  It's been so nice to have a little bit of reserve handy for emergencies, when something unexpected happens that requires more energy than I had planned for.  I can do more than 2 appointments in a day now (although I still need to balance how much I do in a week), I've gradually gotten back into dancing and hiking, and I'm able to do large social gatherings again, which has allowed me to reconnect with some friends from church recently. The road back up the hill hasn't been easy, but at least it's going up!

Wednesday, 20 May 2009

  • Let nothing disturb thee,
    Let nothing dismay thee;
    All things pass:
    God never changes.
    Patience attains
    All that it strives for.
    He who has God,
    Finds he lacks nothing:
    God alone suffices.
    - St. Teresa's bookmark

Monday, 13 April 2009

  • Reconstruction

    I was warned that this would be the most difficult part of the journey. The active treatment phase is over (the reconstruction process is not considered a part of active treatment because it's not treating the cancer), you're not the centre of attention anymore, and you're left standing there saying, "Now what?" I am finding this part difficult, but not for those reasons. I guess I feel a bit pressured, now that treatment's mostly over (I still have 1 more major reconstructive surgery in about 4 months' time) to just bounce back and return to life as normal.

    But it takes time to bounce back from 2 1/2 years of fatigue, 2 surgeries, an IVF cycle and egg retrieval, chemo, a car accident (resulting in my 3rd whiplash injury), and another surgery, not to mention the energy it took to deal with all the emotions of being diagnosed. I'm getting better, but I've still got a ways to go. And I resent efforts to put a time limit on my healing process - I'll be ready to go back to work when I'm ready. I'm not sure exactly when that is yet, but I'm pretty sure it's not until after the next surgery. I've learned that I can't push my body beyond its limits and that I can't rush the healing process.

    And how do you return to "life as normal" when your life's been turned upside down? At the Inspire Health workshop they talked about how cancer survivors described going through a "spiritual transformation," and I finally understand what they're talking about. As S in support group described it, "it's like the experience breaks you down and you have to put yourself back together again." Except when you put yourself back together again, the pieces don't all fit the same way they used to. Getting diagnosed with cancer turns your world upside down and everything looks different... relationships, life, work, your reasons for doing things. But from that new angle, you can see things more clearly and focus on what's really important in life. I made a list of the things that I'd want to teach my children (if I ever have kids):
    - to keep an open heart and an open mind
    - that the ability to put oneself in another person's shoes can never be underestimated - it can prevent so much misunderstanding, frustration, conflict and prejudice
    - that what people say and what people mean are often 2 different things
    - sometimes you have to dig through a lot of crap to find the gold
    - some things in life (like commitment and injustice) are to be taken seriously - everything else is to be taken lightly, especially yourself
    - the ability to laugh at yourself and the situations you are in will help you go a long way
    - to laugh often and love much
    - there is a lesson in everything, if we will only look for it
    - there is beauty in everything, if we will only look for it
    - stay in awe of beauty, for it draws us into God's presence

    So not only am I in the process of building a new boob, I'm also in the process of building a new me. I'm not sure what the new me will look like at the end of all this, but I hope that when she looks at the battle scars on her body, she'll remember the lessons she's learned.

    In a way, I feel like how I did after coming back from China: a little beaten down from the storm I just went through, a little singed from going through the refining fire. It took time and a lot of God's grace to dust myself off and pick myself back up, to fight my way back to health. But I did it then, and by God's grace I'll do it again.

    But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. ~ 2 Corinthians 4:7-10

Sunday, 12 April 2009

  • He is risen!

    Thought this was relevant to my last post as well as to today, Easter Sunday:

    Even though we are often downcast, Jesus always speaks about hope.  And this hope is different from optimism.  Jesus is not an optimist.  He is not a pessimist...  Being neither an optimist nor a pessimist, Jesus speaks about hope that is not based on chances that things will get better or worse.  His hope is built upon the promise that, whatever happens, God will stay with us at all times, in all places.  God is the God of life.
    ~ Henri Nouwen (taken from Christ Our Hope: Daily Lenten Devotions - thanks to everymystic for giving me that!)

    Thank You, Jesus, for making it possible for God to stay with us at all times!

Top Tags - Weblog

[no tags]

onfyre4Him

  • Visit onfyre4Him's Xanga Site
    • Name: onfyre4Him
    • Member Since: 12/17/2005

About Me

[no info]