Elizabeth

Elizabeth.  Oh, Elizabeth. 

Just yesterday, we heard that Elizabeth Edwards had made the decision to stop chemo.  Just yesterday, we – my family – made the same decision to stop chemo.  To stop the treatment that may be saving my life because it was taking too much of a toll on my body.  For fifteen weeks, I’ve been faithfully taking a chemo pill designed to sweep my body clean of any stray cancer cells left after this spring’s surgery and this summer’s radiation treatments.  We had hoped to finish the treatment with three more weeks, but it was not to be.  I’m too tired.  I’m in too much pain.  My body isn’t getting a break, and it isn’t getting a chance to heal. 

Like Elizabeth, I have two young children.  Mine are 3 and 6, about the same age as hers were when she was first diagnosed, but mine are veterans of the cancer treatment dance after more than three years of treatment, remission, and recurrence.  My children come to the hospital with me for checkups and blood draws.  They wait patiently during physical therapy appointments, playing with matchbox cars as the scar tissue is ripped off my chest and I work to regain function in my arms.  They help me pull my lymphedema sleeves on in the morning, settle for quiet playdates instead of park and museum adventures, and have adjusted to quiet, easy pets like fish instead of boisterous puppies as we had planned.  They cuddle with me in the afternoons when I have no energy, and happily share their legos and playdoh when I do.  They are my constant companions, my joy, my loves, and my reasons for living.

And when the little one woke me in the dark of night worried about monsters outside his window, I held him and comforted him and sobbed and sobbed, as I thought about Elizabeth’s children – and my own – and how no child should ever have his mother taken from him because of cancer. 

Not hers.  Not mine.  Not the women that we’ve lost this year or the women we’ll lose next year. Cancer is a thief that separates mothers from children and tears our world apart, one mother, one child at a time.  The grief that we feel at losing Elizabeth Edwards, mother, daughter, advocate, and friend, is real, even if we never met her, because she has showed us the depth of a mother’s love for her children, a love that keeps them close and touches us with its strength – and yet, she was taken from them anyway.  If she couldn’t triumph over cancer, how can we? 

Susan Niebur writes at Toddler Planet and Mothers With Cancer, a group of twenty women writing their truth online.  To help find the cause and the cures, please join the Army of Women participating in research studies.  If you need help, please call the American Cancer Society at 1-800-227-2345.  No one has to face cancer alone.

44 Responses to Elizabeth

  1. Spacemom says:

    “If she couldn’t triumph over cancer, how can we?”

    Triumphing over cancer is what you do everyday! To stop and say that cancer isn’t going to take over your life is winning.
    I’ve always hated (yes, that strong) the statement that “[S]he lost the fight to cancer” That is like saying we lose the fight against life. We will all die. Every single moment we are closer to death.

    Without cancer, I can push off the thought of my eventual death, you don’t have that luxury. However, YOU triumph over cancer EVERY lego creation you share with your children, EVERY snuggle, EVERY “I love you”, EVERY night resting with your husband you are saying “Screw you cancer. I still have life to live.” And you do.

    A friend of mine was ripped away from his family days before his 30th birthday. I doubt he had but a moment to reflect on his fate before he was killed. The loss was devastating and continues to be, but he didn’t lose to life. His time was done.

    We cannot predict the future, but I know one thing, as long as you enjoy the life and people in it, as long as you can still smile and let your kids know you love them, you are winning over the cancer.

    • whymommy says:

      I needed to hear this today. I woke up at 1:30 last night with the baby, and couldn’t go back to sleep. I’m so, so tired of so much of my life being taken over by this fight, and hearing this news yesterday was like a slap in the face. As if suddenly it was “more real,” just because a famous mother with cancer passed on, even though half a million people with cancer die every year. But last night, none of that mattered. I just want more time with my children. I’m selfish that way.

      • Spacemom says:

        Who doesn’t want to have time with their children?
        You are NOT selfish, you’re a parent!

        Sending you smiles and hugs today. I thought of you when I heard the news because I knew it would bring you down…Thinking of you!

  2. Rachel says:

    Hang in there, Susan! We’re all pulling for you! I know it’s hard to hear of others who have lost their battle, but you’re still here, and still fighting, as best you can. I wish I lived closer so I could give you a hug. My thoughts and prayers are with you and your family.

    • whymommy says:

      Thanks. All we can do is pray, and rest, and advocate, I guess. My friend Sarah (from Sprucehill) is starting a new chemo this week – brand new – and so there is always new treatment. There is always hope. It’s just hard to remember some days.

  3. Laura says:

    When I heard of Elizabeth’s decision to stop treatment on Monday and then her passing yesterday, I immediately thought of you. I was soooo worried that your decision was code for “there’s nothing left to do.” I was scared that we were about to lose yet another woman to cancer.

    And then, when I had my first mammogram this morning at 7am – I thought of both of you. I had complained annoyingly yesterday at the thought of going in, dreaded the pain involved, and griped during the procedure. And then I thought of Elizabeth and you – knowing what I had to do…and that I should do it without complaint. Because it could potentially save my life.

    My thoughts and prayers are with the Edwards family and yours. For The Edwards family, I wish them peace and solace. For you, I wish for victory over cancer and many many years of happiness with your boys.

    <<<<<>>>>>>

    Laura

    • whymommy says:

      There’s no code. I’m not going to play games here. We don’t know whether the chemo scrubbed me clean or had no effect. We’ll have scans in January and know more then. Literally, I’m just too weak to have more chemo now, so we’ve done the best we can. Now I rest.

      I’m proud of you for going in, Laura. Clean scans?

      • Laura says:

        I won’t know for a few weeks, I guess. They said something about sending me a letter if everything’s good. They’ll call and ask me to come in if not.

        And the at the bottom of my first comment contained hugs….but I forgot that those are HTML tags and the letters were stripped out. So, consider yourself gently hugged by me.

  4. Susan, I can’t begin to know how difficult this decision was for you and your family. I received your beautiful holiday card yesterday with all your smiling faces. No one knows what tomorrow holds. We can only make our best decisions for the now.
    xxoo

    • whymommy says:

      You’re right. You’re right. And I know that I’m lucky to have this time at all. I just get scared.

      I loved those cards. I loved sending them out this week. I love sending joy to friends, and sharing the joy that I have with my family with all of you, here and in the pictures we took at Halloween.

  5. marty says:

    Keep remembering that it’s not the same. It’s not the same.

    We are waiting until your scans in January, and you are giving yourself the break you deserve. You deserve to feel more like yourself over the holidays.

    But I’m with you on the grief. It’s real. It was like a punch in the gut yesterday.

    Plus, you have something in your corner that she didn’t have – the most wonderful husband in the world.

  6. Steph says:

    You sounded positive about stopping treatment on Facebook, so I took that as a good thing! I’m so sorry that you, that any woman, has to go through this and I hope your children help you heal. ((hugs))

    • whymommy says:

      Yeah, most people did, and I didn’t have the heart to explain the flip side … but as with anything, there are always two ways to look at the decision. I really am relieved that we’re stopping the chemo – I need the rest – but it’s frustrating and scary at the same time.

      Unfortunately, we don’t even know whether the extra week would help – or be crucial to scrubbing my body of the cancer cells. Once again, we need the research.

  7. Colleen says:

    My heart sank last night when I heard the news about Elizabeth Edwards. Spacemom had it right when she said you triumph over cancer every day (as she did by living with love) — every minute you have with your beautiful children and amazing husband is a triumph. And I have to say, my thought upon receiving your beautiful card yesterday was, “I’m so glad that Susan’s was the first card we received this year. What a beautiful family. How lucky they are.” And how lucky we are to know you. I’m praying so much for you — every time I think of you, it’s a prayer for your health and healing. Much love.

  8. Wendy says:

    I don’t comment often, but read your blog regularly and pray for you often. I pray that January will bring clean scans. I pray God will bring healing to your heart and mind as you go through all of this. I pray God will bring comfort to you and your family this holiday season.

  9. Stimey says:

    I don’t have a lot of words right now, but I have a lot of love for you and for all the other women and mothers fighting cancer now and in the future. It’s a sad day.

  10. *m* says:

    Spacemom said it perfectly. I understand why the metaphors of ‘winning’ and ‘losing’ are used in talking about cancer. But in the day-to-day, aren’t the more important verbs ‘fighting’ and ‘living’? You do that to the utmost, every single day, in a home filled with love for those little boys.

    Keep holding them, and hope, close to you, as so many of us hold you and your family to our hearts.

  11. Pastor Margaret says:

    It is so easy to second guess decisions and to have your mind bombarded with questions. I faced a stop treatment decision by the doctor almost 30 years ago with the first cancer. It was the right one. Last month a different doctor and a different cancer brought a “let’s take a rest” decision. I have asked myself if this is a mistake. I have wondered if he believes this will be my last Christmas and wants it to be memorable. Then I remember his words: “If your body gets so low; if you get too tired; if your blood counts gets too low, I won’t be able to treat you at all.” So, we are celebrating the decision, knowing that extra energy means more time to spend living with the disease. I have only to remember that in 2006 I was given two more years. Since then I’ve welcomed three new grand children and had the privilege to baptize each of them and I have the opportunity to care for my precious Tom. You are an inspiration to many, have an amazing family and give so freely of yourself. I hope you will celebrate every minute of this season. We’re praying for clean scans and a renewed body for you! Special love to a special friend.

  12. Susan,

    I had the same thought as others: I thought it was a good thing that you stopped. As you said, you can look at it two ways. Hold fast to the positive thoughts – there is so much to the mind-body connection, as I know you know! My rector started a book on the mind-body connection with her physician. Unfortunately she did not finish it, or I would have sent it to you!

    Lynn

  13. lorristeer says:

    One of the most powerful posts I have ever read. Hugs and tears for you. Love.

  14. I absolutely assumed that your decision not to continue chemo was a victory dance, and I still belive that it will be🙂

  15. Ellen says:

    I’m not one for words, but wanted to send my love and undying admiration your way. You are an inspiration to me and so many others. But most of all, you’re an amazing mom.

  16. elesha says:

    It hurts to read about any mother being taken away from this awful disease, I can only imagine how hard when you are going through it yourself.

    In times of uncertainty we old onto what we know. You had a clean pet scan not to long back which is great, and there is no reason to feel that the chemo has not scrubbed you clean. Try to hold on to that in those dark moments.

    You are going to be here a long long time yet, I just feel it.

    Elesha

  17. Judy Haley says:

    It broke my heart too. My daughter is 20 months now, she was 11 months when I was diagnosed. I hold her tight, but she doesn’t want to snuggle – she’s an active little one. I fear imprisoning her in my arms, but I don’t want to let go either.

    I have to keep reminding myself that every cancer story, every woman’s story is different. We mourn for Elizabeth, and for her children, but that doesn’t mean her fate is ours. There are too many variables. Keep hope in your heart.

    bless you.

    • elesha says:

      That is so true there are to any variables. And there are sooo many people who have beaten and continue to beat this disease. Why not you two?

  18. Kate says:

    When I heard the news yesterday, first I thought of her children and what a difficult year they have had in so many ways. Second, I thought of you. I worried about you last week when you mentioned that you asked your husband if you could please, please stop the chemotherapy. I tried to comment multiple times, but wasn’t satisfied with anything I wrote. Please know, as a relatively young mother of a young child, and as a Ph.D in a physical science working in a government lab, you have touched my life in many ways without ever meeting. You are in my thoughts and prayers. There are no guarantees for any of us, unfortunately, you are in the painful position to feel it and realize it more acutely than most.

  19. JoC says:

    Oh dear. I hadn’t heard. Very hard regardless; yet, worse knowing how such news would hit you (or me in your shoes). I find it so hard to comment. I worry that I will say or have already said the ‘wrong’ thing. Just keep holding on to the fact that you are doing what is best for you in every given moment. You are not making decisions separately from your doctors. Gentle hugs and warm fuzzies today and every day. One day at a time.

  20. Spacemom put it brilliantly, I wish I’d said it first. Just go back and read her comment, ok? and have my hugs with it.

  21. Amy says:

    I was so sorry to hear you’ve been going through all this again. I hope the chemo did scrub out any last invaders. I’m watching a friend with Stage IV/V gallbladder cancer as she fights, and I’m struck by how insidious and unfair it all is. On the other hand, I’m honored to know such strong women! Enjoy the holidays with your boys and rest up!

  22. Your stopping treatment and her stopping treatment are completely different things. You’re targeting stray cells. Her body was probably filled with tumors. You’re in more danger from the treatment. Your stopping was to maintain quality of life for a long time, hers was for that euphemistic “quality of life” that really means that she could die well.

    I’m having triggers from this too — 3 blog posts and counting! — believe you me! But rationally, logically, the parallels between your situation and hers are minimal if that even matters.

    You’re making the right decisions.
    You’re caring for your family (as was she — ok, so one parallel).
    You’re living each moment so, so well.
    That’s really all we can do.
    That’s all any of us can do.

    I used to tell Gavin he was only dying “a little faster than the rest of us.” It was a good way to think about it, for a moment.

    I’m sorry to be who I am, but I want you to know I’m behind you, even though I stand for loss and grief and all that shit. All we can do is fight, live, and love. You’re doing all 3 admirably.

    X

    Supa

  23. Deb says:

    What Spacemom said, wow. A very wise woman. Take care.

  24. Andrea says:

    I haven’t read any of the comments here, Susan, so maybe someone has said this already but….

    …. if the sentiments you’ve spoken here, in this blog entry, are what you got out of Elizabeth’s “message” she was trying to get across all during her cancer battle… well… I don’t think you were paying too close of attention to the messenger.

    Still praying for you each & every day~ Andrea

  25. Mel says:

    This was the best written tributes I read about Elizabeth, and perhaps it is because you are so close to it, so much in the moment. And I am just sending love. And strength.

  26. […] Somewhat against my instincts toward wallowing in the mud of uncertainty, I have listened to my patient husband and soft-spoken oncologist and followed their advice this […]

  27. It sounds so trite to say I’m praying for you and your family. But I am, for what it is worth. Your an inspiration and a reminder of what in life is truly important.

  28. linda says:

    all my love, prayers, hugs, and warm fuzzies. you are an inspiration to so many, and loved by even more. now i’m off to hug my babies who are 17, 19, and 21. going to hug them hard.

  29. Please don’t die. I just met you.

  30. Amanda says:

    How can we?

    I have no answers, but I have hope and belief in what you can do. WIll be thinking of you every day.

%d bloggers like this: