“Why can’t you just be happy?” he asks me, exhausted from the worry and the fear and the what-ifs that we’ve lived with for a year and twenty-one days. “Why can’t you let it go? You beat cancer, baby. You did it. Now you need to leave it behind you.”

But I can’t just leave it behind me. It’s too much a part of me. This nasty, angry beast has crawled inside me, fighting me from the inside as I fought it from the outside, and although I won, there are scars from the battle still. They are on my chest, red and angry lines where once there were breasts. They are on my arms, scarring collapsed veins that even the nurses curse. They’re on my hand, swelling it with lymph as it hangs on a tender arm. They even scar my skull, causing my hair to grow slowly, so slowly, so that I cease to recognize myself.

Although I cannot see them, I fear there are scars on my very soul, toughening my heart with every battle.

It is true that I have won this war.  I fought this foe.  I beat cancer. But it has taken parts of me that i will miss.

My confidence.

My assurance.

My conviction that I can conquer the world, run for Congress, discover great things, and dance at my children’s wedding.

My lightheartedness, and the ability to just enjoy a summer afternoon without stopping at least once to think “I could have missed this.”

My innocence.  I now have nineteen friends who I travel this road with, who all are fighting this fight, and I know there are hundreds and thousands more out there who need to find their own comrades in this battle, who need to understand that they are not alone out there.  That there are other mothers who fight these battles … physically … and mentally.  That we can be strong for our children but weak among friends.  That the fight is not over the day of the clean scan, much as we wish it to be so.

And when we lose one of our own, the tears rip open the scars again, and the sorrow threatens to overwhelm the joys of living.  For Andrea, Punk Rock Mommy, was diagnosed with inflammatory breast cancer just thirty-nine days before I was.  We fought this war together, every post, every needle, every appointment up until very recently.  And now, I’m well.

And she is gone.

It doesn’t make sense.  It just does. not. make. sense.

It leaves me with more questions than answers, particularly as I read her husband’s loving words and see the pictures of her six children.  Why is this disease so aggressive?  Why don’t we yet have a cure?  Why do some people get cancer, anyway?

I wring my hands, desparate to do something to make it better.  But some things just can’t be made better.

Some scars still hurt long after the pain is gone.


35 Responses to Scars

  1. thordora says:

    Maybe it isn’t relevant right this second, but I wanted you to know that before you, I didn’t know IBC even existed, and I lost my mother to breast cancer. And as lately I’ve been having some “interestingness” to deal with regarding mine,I’ve thought of you when I’ve been about to say “nah, it’s nothing.”

    You’ve brought this to me, and many others I’m sure, this awareness. Your scars have brought clarity, knowledge, so many things to many of us.

    Thank you.

  2. Oh, sweetie…


    xoxo CGF

  3. Jezer says:

    I am so very sorry.

  4. Meredith says:

    I also wanted to say that if it wasn’t for you and your blog, I wouldn’t be finally doing monthly breast exams. Even at the age of 40! Thank you!

    There are so many mysteries about life. And perhaps we will never know why Andrea lost her fight with IBC when she did. Her blog was also a gift that has made me cherish each day with my family as if it were my last.

    Thank you for the time that you put into your journal and the information that you have given to those who wouldn’t have otherwise had it.

  5. Donna W. says:

    With any cancer surviver I’ve known, there’s also the “five-year” thing: You know, if you make it 5 years you are considered “cancer-free”. Trouble is, we all know people who made it six years, or seven years, and then died. I hate cancer more than any single thing on this earth.

    And my biggest fear is that I will end up with cancer.

    You are a brave woman.

  6. canape says:

    I just erased my whole comment.

    I know what I want to say. I just don’t know how to say it.

    I’m thinking of you constantly and can’t wait to see you next week.

  7. Stimey says:

    I can’t imagine you not having those scars. I imagine it would be terribly difficult to get those fears to fade. You are so brave and so thoughtful. Give it time. Talk it out. You don’t have to go back to the way you were before either. Everything changes us. This moved you in a different way than you hoped and expected your life would go, but you’ve made a big difference because of it.

    I’m so sorry about Andrea. Her death is so sad. I can see how it would be so difficult for you.

  8. HeatherK says:

    Before you, before this blog, I, too, never knew what IBC was. I only happened upon Andrea’s blog when she was in the local paper and I knew what she was battling because you were as well. There just aren’t words. I want to believe with all my heart, that the hardest part is behind you, but maybe that just diminishes how hard it is, in fact, to succeed at this cancer fighting thing. To begin anew instead of just picking up where you left off.

  9. Urban Mama says:

    Such a powerful post, Susan. Before I met you in Jean’s van, I had no idea what IBC was or anyone who had fought it. I arrived at Andrea’s blog via another friend who went to her church, but immediately I thought of you and knew you had to know each other. I read her blog beginning to end and thought of it as a way to start grieving my own mother’s decline with metastatic cancer. I think my mother is young to die at 66, but 37 just doesn’t make sense! Thank you for your words.

  10. beautiful, and important, as always.. and the scars.. I understand, in my own way.

  11. Donna4k says:

    Sometimes our men just grieve over losses differently than we do.Sometimes our men who love us get incredibly pissed that they cannot “fix” what is wrong or negate a situation that gives them a total lack of control…Itis so hard sometimes. Maybe he needs to have a private cry in the shower… or maybe you do… (gentle hug)

  12. NYfriend says:

    Naturally you need time to heal, time to mourn, time for all of it to settle back in. But my confidence, my trust in you conquering the world, and yes running for Congress (for I always pictured you doing so), are even higher and stronger than they were a year ago. And that’s amazing because those things were already sky-rocket high. So to go even higher is just plain amazing. That’s because you are amazing.

    Hang in there my friend, things will get better. You’ll see. 🙂

  13. yertle says:

    Great insights — so honest. Thanks. Big hugs to you.

  14. Life never makes sense. But for those of us who remain alive and well, whether cancer survivors like you or otherwise like me, we must strive to make the world a better place so that the battles fought and lost by brave people can be validated. We must continue to strive to make the world a better place for people like Andrea’s children and our own loved ones. For people we have never met. For the future that is not ours.

  15. mandi says:

    big hugs. i have no words to say…lots of love to you

  16. I just got home from the Kids Konnected support group and it was a Mom’s first time with her 2 kids. She had just finished chemo and is having her mastectomy in a few weeks. She said I was the first person she has spoken with who has “been through it”. It is a times like these that I know why I now have the scars. Other times when things are hard I also think “but I got through cancer”. Everything is still so fresh for you – but as many others have written you have helped so many. I think we can be and are happy but we are Women and Moms – we worry. Thank you for letting me be one of the “19”. Hopefully our scars and our stories will continue to help others.

  17. Robin says:

    ((((big huge gentle enveloping hugs))))

  18. amandalinn says:

    I think they say recovery lasts as long as treatment did. I suspect that includes emotional recovery.

    Many are in mourning for Andrea. And of course that brings up “stuff”.

    Thank you for all that you share.


  19. Victoria says:

    Dearest Susan,
    It’s just the way it is. There seems to be no rhyme or reason to why some live and some die. Fear, unfortunately is as big a disease as any other and can stop us living our life.
    Today you are well and tomorrow. Try not to look at the bigger picture. None of us know that.
    I am thinking of you and send you as many positive vibes as cyberspace can carry!
    I would like to help you produce something in the memory of Andrea. love Victoria x

  20. cancervisa says:

    post tramtic syndrome is rearing it’s ugly head. Call your shrink NOW!

  21. justenjoyhim says:

    I know, I know. I don’t know what your beliefs are. I put my worries to God, when I can — sometimes it gets so overwhelming that I can’t. Like when another IBC sister dies. That’s always grief mixed with fear. Sheesh. IBC is just a whole different beast and its uglier than most; I don’t think most people understand that. It makes it hard to breathe normally again, but we have to somehow try so we can enjoy what we do have while we have it. But I do understand, Susan, I really do.

    Huge *hugs to you, my friend.

  22. Randi says:

    It doesn’t make sense. I agree wholeheartedly with you. I don’t know how to make sense of it either.

    I do know that if it weren’t for you and Andrea, I would not know that IBC existed.

    I do know that I was able to connect to both of you through your blogs in a way that most people can never imagine.

    I do know that I mourned Andrea when she passed and am still thinking about her a few times a day.

    I know that I will be reading the blog to try to help her husband and family cope, if I can at all.

    I also know that I fear Cancer.

    It doesn’t make sense, but people like you and Andrea do everything you can to help others become aware of IBC and cancer and to actually put a face to it.

    We should be thanking you.

  23. throwslikeagirl74 says:

    A friend of mine asked me the other day how I would know when I’m healed. I told her it would be when Cancer wasn’t the first thing I thought of when I wake up in the morning and the last thought before bed. I have lots of treatment left, so I think it’s going to be a while. I hate that it forever changes us. I hate that it takes people away from us. Hate Cancer.

    That said, look how many people have been helped by your blog and how many hits we get over at Mothers with Cancer. What a legacy for us to be able share our experiences with the newly diagnosed so that they don’t feel as alone as we did at first.

  24. jillaldrich says:

    You said it perfectly. It’s that loss of confidence, assurance, innocence. I mourn the loss of those things, too, and daily I am frightened by the thought, “I could have missed this.”

    This community of women–and not just the 19, but the others who write, who read, who check their breasts in the shower because they found something on these blogs (like your latest post) that made sense–shares my grief at my losses and shares my joy in my unexpected discoveries.

    I am here, and I have company. And that makes it manageable.

    I sometimes don’t want to be here. In fact, I sometimes become horribly depressed. But then I read something inspiring, or stumble upon something incredibly useful, and I’m filled with gratitude. I am grateful for people like Andrea, who shared her experience so honestly and openly; and people like you, who continue to fight while maintaining their humanity.

    Thank you, Susan.

  25. Laura says:

    You need to be patient with yourself. 14 years ago drs. thought I had bone cancer. After major reconstructive surgery where the surgeon took a chunk of bone out of my wrist and replaced a bone in my hand, and 2 months of testing, it was determined the tumor was benign. I was warned it still could become cancerous, so I needed yearly check-ups forever. I was traumatized by the physical and emotional pain I had endured. I was exhausted by the nagging what if thoughts, the constant aching gratitude for every breath, every moment. I thought I would never feel like myself again. However, little by little, my mind began to heal. I got busy living again. As the scars on my body faded, so did the scars on my mind, and I began to feel like myself again, only better. I had more compassion, I was stronger, and I have retained the feeling of gratitude, but in a more relaxed way. I still think the what if thoughts, but only when it’s relevant, like when I am late in making my check-up appointments because I have been busy, or put myself last on the list. You just need some more time, because you have been through so much. Take some deep breaths, and be patient with yourself, just like you are with your children. You don’t tell them to just get over it when they get hurt. You comfort them and allow them to work through their feelings. Do the same for yourself. You will get there!

  26. Debbie says:

    Hi Susan – Just found your blog through the CNN article. I’m an IBC survivor – in fact yesterday was 4 years since my diagnosis. What you’re going through now is very familiar to me. When you’re fighting cancer – you’re DOING something – something you can focus on, get through, be pro-active about. When you’re done with treatment – you feel like you’re just waiting to see if it comes back! I went through a serious depression AFTER I was done with treatment and cancer free. I had the best attitude in the world while I was going through it all – and felt like an idiot that I was depressed NOW! And then when you put the grief and guilt of a friend dying while you live – hang in there sister. And know your husband is doing his best – but he can’t understand – he hasn’t had it and he’s a man. Talk to the doc and don’t be afraid of anti-depressants.

  27. hotfessional says:

    It took my own post and many, many blog friends of both genders to make me realize that my husband and I, as much as we can’t live without each other, have very, very different ways of dealing with our fears and feelings. Donna4K is right in that men (in general) want to fix things…and when they consider them “fixed”, then they have been successful.

    We’re just not wired the same way honey. Knowing that, and accepting it, makes us even stronger as a team.

    …and by the way – I love the new picture with all of your gorgeous hair growing back.

  28. Jyber says:

    “I wring my hands, desparate to do something to make it better. ”

    Susan, you ARE doing a LOT to make it better, particularly in the area of increasing awareness of IBC.

    You will never know the full extent of your impact on others.

    Andrea’s loss is a true heartbreak. (I am in the Philly area so know of her from that as well.)
    But many others may be helped by your actions.

    As for “moving on,” IMO that will happen in bits. It will be two years since diagnosis for me in January, and I am still obsessed. We never know if we are “cured,” but then I figure we are all terminal anyway LOL!

    Your boys are the best inducement to move on, as they surely will, bringing you along with them!

    Wishing you lots of happy times this summer!


  29. So sorry to read about your friend. I worked for several years as a hospital chaplain and was blessed to work in oncology for part of that time. Hard work emotionally, but still, I came away a better, stronger person and I still treasure all those patients who shared the last part of their life journey with me. There is something so incredibly awesome in the midst of the sadness. And I got a sense of that in reading your posts. Thank you for your honesty and your willingness to be real.

  30. Laurie says:

    yes, yes and yes. I very much understand. And I’m sorry.

  31. Holly Fry says:

    Hi. I just fell upon this site. I lost my best friend, Kelly Pomrinke to IBC. It will be 2 years this November- the day after Thanksgiving. She was 32.

    Approximately 1 month after giving birth to her daughter, she noticed that her nipple had become inverted and discolored. She was told by her doctor not to worry about it. She was fine. She was completely misdiagnosed. By the time they had figured out what was going on, it had spread to her liver.

    But – she actually went into remission. Until she was diagnosed with Leukemia. She died from Pneumonia.

    I am so glad you have this site. Kelly would be thrilled you have this site. I feel like she is doing the typing here, not me. She fought incredibly hard not only for her survival but for a cure.

    In the month before she died, she did the Susan G. Komen 3-day walk. She walked 20 miles a day for 3 days. All 60 miles. I will be doing the walk for the 2nd year in her honor. We call ourselves “Kelly’s Warriors”. I miss my friend.
    She wouldn’t want you to know all of the details of her illness. She only focused on the positive. She would want all of you to know that this site is invaluable and the more we talk the more likely we are to find a cure. FIGHT ON!
    And on behalf of Kelly – Thank you.

  32. whymommy says:

    Well. It’s always darkest before the dawn, isn’t it? Today I found out that republished Margaret’s Health article, and this site got over 10,000 hits today. Yep, the day I published the lemons and reminded people to check themselves for signs of breast cancer.

    That makes me feel really good. As do all of you.

  33. […] early light of dawn Well.  It’s always darkest before the dawn, isn’t it?  I just found out that published Margaret’s Health […]

  34. imstell says:

    Susan, you said it so perfectly. The scars, visible or not, remain long after the disease is gone.

  35. Violet Aandres says:

    Dear Susan,
    I lost my dear Mom ,at 53, to breast cancer. There is so much more support these days. Thank God!
    God has provided wonderful support for our bodies, as well as our psyches, in the form of plant essential oils. The wonderful juice form of antioxidants- NingXia Red- has such a broad support for our immune system as well as our emotions. Our swim instructor here in Colorado, has taught classes right through chemo, radiation and a double mastectomy. She is such an inspiration. Her use of NingXia and an array of therapeutic grade essential oils, has been wonderful to behold. She is so resilient.
    Lady Y Chapman- Clark’s wife -forwarded your information to me. Bless you in your continued healing. I think that you would be a great leader. Only, you can probably accomplish more from your BLOG site than the State House.
    Keep on keeping on.

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