Wednesday, April 11, 2012

How I Am Doing

For the first time, possibly ever, I am struggling to write, to care enough to type out a few words about how I'm doing. Or perhaps more accurately - how I'm not doing.

I'm recovering from the surgery just fine.  The doctor removed what was left of the lump and the surrounding lymph nodes.

I'm waiting to hear back about the results:  was it just "rubble"?  Was there active cancer contained in the rubble that was successfully removed? Or do I still have cancer?

I'm sorry to report that I'm not handling this waiting very well.   I've had it.  I'm tired, sore and my soul is weary.  I pray all the time but it feels like I'm going through the motions.  I sleep and read a lot, because when I'm awake or aware I'm so clenched with worry I can barely function.

I wasn't going to post until I had the results, but I've gotten so many "are you okay?" messages that I knew I had to at least check in.

So I'm okay, but I'm not.

I think I'm going to have to get used to living this way.

I don't know what happens if I still have cancer. My doctors, smartly, refused to talk to me about it in detail.  Getting my mind to stop awfulizing is next to impossible.  This is my trial, I guess, the thing that I must go through so I can learn how to live with more faith, with more hope.   Even if I make it through this one, there will be many, many more tests, many more waiting periods in my future.

I wish I had rosier words for all of you.  I wish I was handling it with poise and grace all the time, instead of retreating to my bed with my book and a fair amount of tears.   I'm finding that I really, really miss my Dad, too.   He had seven years of tests and waiting for results, and I could really use his strong arms around me, and his wise words to guide me.

But that's not the reality.

So I stretch and grow and cry and learn and breathe and try to keep it in the moment.


41 comments:

  1. Sending my love. You take care of yourself the best way you know how. If that means hiding with your head under the covers, fine.

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  2. Oh sweetie. I'm glad you posted because we don't always need to hear the cheery Ellie, we just need to hear you.

    Sending LOTS of LOVE!

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  3. Please don't apologize dear friend. You have every right to be sick of this, and tired of waiting. You are not at all required to "handle this well". Handle it whatever way you'd like and we'll be here for you. Much love.

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  4. I can not even imagine the difficulty in waiting. Sending all the love I have and praying for you dear. May you feel the love of so many lifting you up and holding you close.

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  5. So much love to you. Thinking about you all of the time. xo

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  6. I'm so sorry you have to wait and worry. Praying and praying and praying.

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  7. I just commented and well, it's gone. Damn. Anyway - what I said is....waiting sucks. I despise waiting. It's the one of the worst feelings in the world to me. I'm so damn impatient. And with the waiting you are doing? I can't even imagine. I think we're action people...you know? And what the hell is waiting? It's so in between. Not here or there. Just in between. And you are doing such an awesome job in finding grace in the in between. I could never do what you are doing. At least I don't think so. So while you think you are not handling the waiting with poise and grace....you kinda are. At least to me you are.

    So pretty soon the waiting will be over and you'll be on to the next action phase so you can get on with things. And you will get on with things. Because that's what you do. Whether you think it or not, you do. You are always in my prayers...know that please. And well, can't wait for your waiting to be done!

    xx
    Lee

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  8. You are so entitled to write about how hard this is - because it absolutely has to be and if you weren't weary and not always faith-filled, I think everyone would be amazed. You don't know me, but your blog, your life, has inspired me in a million ways. You deserve support and recognition and nurturing (even via the internet) because you give so much to others. I wish I could say the right thing, but I can't because I can't even imagine, but know that a stranger this side of the computer is praying for you and supporting you quietly from afar and hoping with you for the best, best outcome in your test results.

    Be gentle with yourself and despite the fear, nuture yourself in ways that you can and let others like us check in. Don't expect anything of yourself other than healing, which is so much easier said than done.

    My family and I are praying and supporting you.
    Love, Tricia xx

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  9. We do not need rosy words, dear Ellie. We do not need poise and grace. All we want is to "hear" your voice, no matter what it has to say. We want to support you with words, that's all. No need to shine it up for us. Lots of love to you. Lots and lots.

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  10. Oh Ellie. I wish I could hug you. You have to do/act/feel/cope any way you need to right now and it's all okay. I'm praying and wishing and hoping for you.

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  11. Thanks so much for the update. There are so many people out here who care about you and how you are doing. Sending prayers and love and thoughts of healing. xoxoxoxo

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  12. Praying for you and sending strength. Your words are piercing and beautiful, even when you're not feeling it. xo

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  13. So, so good to "hear" you, Ellie. First, I'm glad the surgery is over and that you're recovering physically. *Big* sigh of peace there.
    Next, thank you and kudos to you for coming here to update all of us who are thinking of and praying for you. We know it wasn't easy and we're grateful. Grateful, too, that you've afforded us this space to let you know how much we care and are thinking of you.

    As always, big ((hugs)) to you, Ellie.

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  14. I'm so sorry that things remain so unsettled for you. I think waiting is the absolute worst and I don't think anyone is really "good" at that. I'm glad you posted about what's happening. I think about you a lot. I hope it helps to know that others are sending you strength and praying for you. I know I am.

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  15. Thinking of you and praying for you. Which is what we are here to do for you when you don't have the strength.

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  16. Thanks for the update. I wish things were easier for you and that you had an "all clear" from your doctors. I too am terrible at waiting and dealing with the anxiety that comes with it.

    Please don't feel like you have to wait to write only when things are going well. Updates like this let readers hear from the real you, with real feelings and frustrations. Your writing is such a gift to your readers.

    Praying for you...

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  17. just breathe, ellie. just BE. thank you for having the strength to let us know. i wish i could do more for you. hang in...and remember you are loved.

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  18. You know what Ellie?
    Waiting sucks. Uncertainty sucks. Cancer SUCKS!

    You are being as you are and as you feel. there is no right or wrong, and why anyone,(even you), would think you should be doing better or feeling otherwise is beyond me.

    I'd be sleeping too, all the time. I'd be not thinking about it whenever I could. I'm a human being, as are you.
    I am grateful that you came on and posted, because I have been checking and wondering. But you don't owe me or anyone a post.
    Sleep, cry. Love yoiur family. Know that you are loved and hope is being held for you by a bunch of faceless, nameless other humans who care about you.

    Let us know what happens next when you;re ready...
    xo
    michele

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  19. The stress of not knowing: normal.
    The lack of sustained ability to cope: normal.
    Crying: normal.
    Bone-tired weariness: normal.
    No human should have to endure this kind of illness OR its treatments, OR deal with this kind of prolonged stress. The waiting is the worst, too. That you are real about how you are (or aren't) dealing with it makes you one of my heroes.

    Mister Rogers created a character in his Neighborhood of Make-Believe, my favorite: Daniel Striped Tiger. A really shy guy, yet able to feel his feelings and own them. He was described by all who knew him as being 'brave without knowing it.'
    You are my Daniel Striped Tiger.

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  20. Thank you so much for checking-in ... your thoughtfulness, even in the midst of this hard time, shows through. I can imagine it must feel like an eternity of waiting. Along with the many others here, I am praying daily for you.

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  21. You don't need to be peppy, just be you.

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  22. You owe nobody nothing. You feel what you feel and that is okay. I would be feeling the same way. I know me. I so often read your posts and I can literally feel your feelings because I don't do well with not knowing, in fact, I do terribly. You're burnt out, no surprise. Do whatever the hell you need to do to get through the day and the next day and the next one after that until you don't want to do whatever it is and then do something else. We are all here for you cheering you on and we may not have those strong dad arms but collectively, I think we could give you a pretty big bear hug.

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  23. Residual nodes less than 1.5cm are 95% of the time non-cancerous.
    And if it was, you are now clear.
    10+ year survivors are out there. My friend the other day met someone who is almost 10 years out, and he was a heavy smoker and drinker. Brian Hill, founder of OCF, is a 10+ tonsil cancer survivor, and he was stage 4, bilateral neck nodes.
    I know the symptoms from treatment suck, I am 4 months out of treatment.
    You are done with chemo/rads/surgery... it only gets better now.
    All the best

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  24. Oh, good Lord girl, thanks for just posting!

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  25. Thank you for sharing, once again, so honestly. Praying for you!

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  26. You know what? Just surrender to it--the crying and the anxiety--let it take you and go to your bed and ride the wave and it will pass.

    How could you expect anything else of yourself? Surrender is not a lack of faith. In fact, it might be the pain of faith.

    I LOVE YOU.

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  27. My ordeal was much easier than yours... It was just a surgery, and some loose ends that it took a while to tie up, but you know what? I'm still having some of those days. I think we want to try so hard to show only the brave face and the grateful to be alive stuff. And you are so real and honest here, but even us real and honest girls feel like we have to frame our words a certain way sometimes. I get the ugly fear and the soul-weariness. I'm thankful for your words there too.

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  28. Oh, my goodness - thinking of you and sending huge hugs and prayers. No matter what you say, I think you are grace personified.

    <3

    Anna

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  29. Love and prayers being sent. xo

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  30. Ellie -- I am really glad you wrote an update and were honest about exactly how it is for you. I feel selfish that I was one of your readers who really, really wanted to hear from you and did not consider that you just might not feel up to writing. I apologize for that. My heart goes out to you and I concur with so many others who say you have every right and reason to do exactly what gets you through. I've had several friends with cancer but I have not had cancer myself and I cannot pretend to know what it must be like. I can only imagine how hard this is. You are the epitome of grace to me because you feel and you are able to share your feelings so eloquently. I pray for rubble and I pray for a quick end to the waiting. Much love. Joanne

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  31. Thanks for your update...keeping you in my thoughts and prayers.
    Much love, cyberhugs and wishes for peace of heart and soul for you.
    Siggi in Downeast Maine

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  32. thank you for being real. some sanitised, perfect version of events 100% of the time would not ring true, and it brings us closer to you knowing that you are still human and not yet a saint. Thinking of you as you endure the agony of not yet knowing, hoping the results are speedy and good news, and praying for swift healing and many large dollops of grace :) xx

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  33. Ellie, your post was so honest. It takes such courage to be honest and vulnerable. I want to wrap up your waiting and fear into a ball and drop-kick it to the farthest corner of the earth. If -I'm- honest, I feel so angry that this is happening to you. I hate that you, this lovely, amazing, supernatural-like, generous soul, have to endure this bullshit. I want to scream, "This is so UNFAIR!" Because it is. Waiting sucks the big one and it pisses me off that you have to wait. But answers WILL come. And come what may, we'll surround you with love no matter what the answers are.

    Let yourself crumble and be in your fear. It's okay. You're okay. God has not left you. And we won't either. I'm praying for your healing from the deepest corners of my heart. Anything you need, say the word, love. xoxo

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  34. Ellie, I'm another person adding my voice to those above, thanking you for letting us "imaginary friends" know how you are doing. I think that like "real life" friends, we are here through the good and the bad ... and the waiting. I only hope you can feel all the love surrounding you from these many, many people who know you only by your words, but who feel like we know you. Stay strong.
    Lee Ann

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  35. Sending so much Love and Light, Ellie. The waiting is horrible. I wish I could be with you and stroke your hair. I don't even know you in person but I am crying right now. I'm so sorry your are suffering, sweet girl. You are not alone. I'll be thinking of you, Email if you want: zipmonk@comcast.net I can also send my phone number...

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  36. hey Ellie, I'm Julie, always have trouble posting comments, so heaven only knows if I will succeed this time. Is there massage, manicure, pedicure, pleasant spa treatment, psychological counseling, any other support or distraction that can be accessed? I am awful at waiting, and this is a lot bigger than any results I've ever waited for. I hope you are able to experience something pleasant and distracting that will ease your suffering.

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  37. I've been thinking of you often these days. Thank you for pushing the edges of your energy to check in.

    Continuing to keep you and your family close in my heart.

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  38. Just another friend you don't know sending you love and light from afar. You have so much to teach and so much to learn. You will be here for a very long time to accomplish all that you are capable of. I can tell.

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  39. Thank you for posting. Wish we could each take a bit of your stress and pain away.
    Hugs

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