Sunday, January 8, 2012

The View From Here

 I love our master bedroom.

One whole wall is floor-to-ceiling windows, with a pretty french door that leads to a second level deck. The arc of the sun at this time of year makes it the brightest room in the house.


The walls are the palest blue, and the trim is bright white.  It has a Caribbean bungalow feeling, and it has always been a space that brings me peace.

This sanctuary will be where I fight this cancer fight.  The physical symptoms of radiation and chemotherapy are kicking in, bringing with them the mental part of this battle.

Up until mid-week last week, I felt pretty good. My throat was getting more sore - both from the radiation and from an outbreak of thrush brought on by the steroids - but my energy was good, I was sleeping better, and able to eat most soft foods.

This has changed, and quickly.  The thrush has gotten worse, making any type of solid food nearly impossible.  Even liquid shakes burn on the way down.  I have been given a numbing solution - something I can drink before I try to eat that numbs my palate and throat - and I have to sip this continuously to get any food down at all.

The radiation causes chronic dry mouth, which means I wake up frequently during the night totally parched and needing to sip water.

And I'm tired.  Yesterday Steve and I went to an afternoon movie as a date, and it totally wiped me out.  It's a bone-tired weariness, like I have the flu.  Except it's cancer. And I'm not even a third of the way through.  It's only going to get tougher.

I spend most of my time in my Caribbean sanctuary, sleeping, reading and playing hours of Mah Jong on my Kindle Fire.   Except for when I have to get to the city for treatment every afternoon, I am mostly resting.

There are bright moments, for sure.  This morning the kids piled into bed with me, bubbling with stories and questions and snuggles.   We lolled around in bed, a tangle of limbs, for over an hour.

Finn gave me a squeeze, told me he loved me and that he's glad that I have "the lucky cancer" and that I will be okay.

Tears sprung to my eyes as I gave him a bear hug and told him I'm glad I have the lucky cancer, too.

I have come to terms with the fact that the feeding tube needs to go in this week.  I am hungry all the time, but because I can't eat much the weight is coming off fast.

It's like a triathlon - each leg of the race brings new challenges.  And to train for my race I have to keep surrendering, keep letting go.  Instead of running harder, my training regimen is to flop back and lie still. Staying in bed most of the day is harder for me than running a half-marathon would be.

So I sit in my sun splashed room - me and my lucky cancer - and I breathe through the tough moments.  I try not to think about bacon double-cheeseburgers while I sip my protein shake.  I try not to cry as Steve and the kids head out for a nature walk on a beautiful January morning and I settle in for a nap.

I try not to feel sorry for myself.  But sometimes I do.

And sometimes I feel like the luckiest cancer patient in the world.  Especially at the infusion center, where I receive chemotherapy treatments once a week, and I see what unlucky cancer looks like.

I don't like writing about the tougher bits; it feels like complaining, or like I'm begging for sympathy.

It's neither.

It is simply my truth of the moment from my Caribbean sanctuary on a sunny Sunday afternoon.


29 comments:

  1. I don't think that anyone will view your sharing as complaining. It is good to share.

    Praying for you to find peace in your Caribbean sanctuary today.

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  2. this too shall pass...you will make it through to the other side. when you reach the end of your rope, make a knot and hang on!!! you have soooo much love, positive thoughts and prayer coming your way...take a deep breath and take it all in. :) love from charleston!!

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  3. A few words for your sanctuary... "He MAKES me to lie down in green pastures, He LEADS me beside still waters, He RESTORES my soul..." - Ps. 23:2,3. Moment by moment. Breathe in, breathe out. Be. Rest. It's okay, you are not alone.

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  4. Thanks, Ellie, for your perspective - I wrote a blog post about you today: http://sandiratch.blogspot.com/2012/01/how-did-i-get-to-be-this-lucky.html
    I hope you realize that your writing is reaching people and helping. It's helped me a lot. Please keep it up as long as you can - and rest when you need to. My prayers are always with you.

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  5. You are always in my prayers, internet friend. Thank you for sharing with us, that you may know we are here with you. Judy's words above are perfect. Trust your Higher Power.
    Lee Ann

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  6. Little by little; bit by bit. Thinking of you and holding you up to the universal healing power; you'll make it through.

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  7. You are amazing and strong. So glad you are blogging about this and willing to share your thoughts and feeling s to help others!!

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  8. Wow, your strength and grace in the face of what you are dealing with never ceases to amaze me. It would be so easy to get caught in the whirlpool of feeling sorry for oneself, yet you are working so hard at staying balanced and peaceful.

    I could only wish to be as strong and centered were I going through half of what you are.

    You are in my prayers.

    Noel Ratch

    PS The comment on "lucky cancer" could only come from the mind of a child - we are so blessed that they are with us to keep things in perspective for us.

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  9. Lucky cancer -- wow, what a way kids have of looking at and saying things. I really feel for you. Your side effects you are enduring sound very painful and ones that are hard to take your mind off of. I will continue to keep you in my thoughts and prayers. Joanne

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  10. Oh Ellie, I had so hoped the tiredness would not hit you so hard. I suspect though that if you are losing weight so fast that you really ARE in need of more food, and so when the tube goes in I hope that you feel better and have more energy.

    In our program we say one day at a time, and I think that is how you are living your life now. But in the program there is never an end, and it sounds like you are approaching the 1/3 point, and soon it will end and you can begin to recover the old energy and zest for life. Something to look forward to, isn't it.

    You do not have to be strong for me. You can complain, fuss, cry, bitch .. whatever. If that helps you get through a day it is a good thing to do. Of course I suggest setting an alarm clock to tell you when to stop and get back to enjoying what you have.

    Feel free to post me any time you need to or want to. I care.

    Hugs,

    Mike L

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  11. Oh Elizabeth, how I wish you lucky.

    Trish
    xoxo

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  12. I read your truth. And am crossing my fingers for more sun kissed lolling moments.

    xo

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  13. thank you for sharing the truth of the physical and the heart pain. and for the small moments, and for showing us the view in your sanctuary. i feel closer to you having read this, and im grateful for the look in. sending you love and endurance. *HUG*

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  14. Oh geez. When you talk about lying back and being still being harder than a marathon - I totally get that. That would drive me insane I think. But yes your sunny bright bungalow is a pretty cool sanctuary if you have to be resting. Always thinking of you Ellie. Always.
    xo
    Lee

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  15. I find myself gritting my teeth as I read yor recent posts. Fight Ellie, fight with everything you've got.

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  16. Thank you for letting us into your Caribbean retreat. Whether it's the lucky cancer or not, I so wish you didn't have to go through this.
    You aren't complaining at all.

    Keep writing, we are here for you!

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  17. Ellie,

    Complain. GO. Now is the time.

    Love you.

    Ann

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  18. Thinking of you, Ellie. So much.

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  19. Hugs and love and healing prayers to you Ellie.

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  20. As always your grace astounds me. Because of your courage we are all lucky.

    Thank you.

    Xoxo

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  21. Rest, Ellie, just rest.

    Fall back, knowing you are held, always.

    So glad you have a pretty, light filled space to do this in.

    Just rest.

    Love to you...

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  22. I come here, every night...I can only imagine that there are thousands (if not millions) out here like me. Pulling for you, praying for you, hoping for you. But also thanking you. You've changed lives, and are still changing lives. You bring so much beauty and joy, even in your sorrow.

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  23. We need your truth. All of it. Your blog didn't strike a chord with recovery folk because you were a shiny happy person in recovery. It's the same with this. You show up here real and we love you for it and we love your words.

    Praying for you.

    Val

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  24. Love you, Ellie. Hang in there.

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  25. Your ability to step outside yourself, and be in the moment, to see the preciousness of the little things is a true gift. I see myself either rushing or drifting through life, and it can be such a waste. Thank you for reminding me to treasure those moments with my children, not just wait for bedtime!

    I hope the feeding tube will bring you new strength and the sense of hope will be stronger than the exhaustion. xx

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  26. Love you Ellie and thinking of you. xo Fiona

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  27. Hey Ellie,
    You can bitch, cry, complain, whine, etc. etc. as much as you want and I will still think that you are wonderful! You are a brave woman, doing what you have to do to get through this major hurdle in your life! You, go, girl! My prayers and positive thoughts are being sent your way!
    Shelley in SK

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  28. Lovely sanctuary, a place with good, healing energy. Thanks for sharing, Ellie.
    All shall be well ...

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