Tired and hurty and scared.

I’m not always brave, you know.  Despite your lovely comments, I feel less and less brave these days, these days I spend in bed, resting up for the times I can get out of bed and spend with my kids – playing board games, or cars, or legos, or, more often than not, having them crawl back into the bed with me and cuddle while we watch Phineas and Ferb or How It’s Made or Build It Bigger – tv that captivates all of us, and is the background to Mama snuggles, so that no one notices how quiet Mama is again or how we’re not going out again today.

The days still run into each other, one after the other a mix of naps and rest and tv and computer games; Widget and I are playing an online game called City of Wonder together; I’ve let him set up his own account and make his own decisions and adventures and mistakes, and in return he asks me for advice and lets me peek over his shoulder.  It’s adorable to see him so grown-up, and it lets him stretch his wings.

As long as I pace myself, I do okay, unless I’m late taking one of my medications.  The oxycontin I take around the clock needs to be at a steady level in my bloodstream to control the cancer pain – cancer has replaced bone in several vertebrae, and in one set they mash together, squashing a nerve and causing the pain that appears to be in my ribs.  If I’m late taking the medicine, the pain starts to hurt and then gets quickly out of control, taking me from “fine” to OMG I’M GOING BACK TO BED NOW in just 15 minutes.  It happened on Monday, when Jess and Kristen were here, and I went downhill pretty quickly.  I took a supplemental medicine for breakthrough pain, but when it hadn’t worked after an hour, they put me to bed, and let me cry, and spill my fears out on them like a dropped sippy cup that broke its lid.

It wasn’t pretty.  It often isn’t pretty.  It’s so ironic, isn’t it, with all the pretty pink ribbons and cutesy campaigns urging hope — that the real life of a cancer patient has nothing to do with pretty, and everything to do with blood and poison and knives and fighting and rest that doesn’t take away the tired.  Gayle Sulik says it better than I do – her book Pink Ribbon Blues demands that we peel away the pink and ask for the facts underneath.  How much of this product or promotion goes to research?  For only research will result in the cure we need – the cure we all need – for we’re learning now that even women who are diagnosed today, if their cancer will metastasize to the bone or lung or liver, it most likely already has.  The seeds, way too small to be detected at this point, have already been sent to near and distant body parts, and they are already working to take the woman’s cancer to late-stage, even as she reels from the shock of a new diagnosis.

They didn’t know that when I was diagnosed, just four years ago.  They said that we could fight off recurrences, with diet, and exercise, and nutrition.  And while that good behavior may postpone recurrences (we don’t know) or postpone initial onset of disease (as it should – make that body HEALTHY and it has a better chance of killing those nasty stray cancer cells popping up in bodies everywhere), in the end, if the cancer was destined to spread, it probably already has.  And that, my friends, is hard news to hear.  Damn near impossible once the cancer is in your own body.

This isn’t easy and fun to read, I bet.  I’m sorry about that.  I’ve tried not to write until I could write something pretty, something grateful about the fun times I had at Type A Mom, or the beautiful dress made out of stars that Elena and Stacey and I found together, or the magical moment that the DC Moms had with the Bloggess’ red dress, now on its way back to her, but I’m preoccupied these days.

I hurt.  I’m tired.  And when I am so tired that rest isn’t enough, and the hurt is so deep and has been there for so long now, I get scared.  Really scared.  About the future.  About the future of my boys, and who will care for them when I’m gone, and how soon that might really be.  About what I should do to prepare (laundry? photo books? letters for each of their birthdays until they turn 21?) and when I should start.  About how they’ll take it, and if they’ll let themselves cry, and when they’ll be able to stand tall again and know that they. are. enough.  That Mama loves them with all her heart, but they. are. enough.  And they are ok.  They will be ok.

I know they will.  I know I will.  I’ll gather my strength and buck up and try again to do this gracefully and bring happiness, not tears, to my friends and colleagues and readers, but right now?  I’m tired, and hurty, and scared.  Three words that kept coming to mind as I pulled the blanket over my head on Monday and tried to rise above the pain I felt, even hours after Jess and Kristen left and my husband came home early to comfort me.  But it’s a cycle.  My body is tired from fighting the cancer cells inside, and their presence (and bone loss) causes pain.  And when I’m tired and hurting, my defenses slip and the fear comes wooshing in to join them.  And then that’s all I can think about.  Or at least it was, until the door opened late Monday afternoon

and my babies crawled into bed with me for a snuggle, seeking comfort, and I almost laughed in relief that I could wrap my arms around their little shoulders, and hug them tight, and snuggle as we turned on the tv and they began to relax and laugh again as we watched cartoons together and reveled in that word – together.

My friend Elena has started a new web site, Just Be Enough, which is beautiful in concept and in execution, and today she has a new initiative – by leaving comments or links on Monday’s posts this month, you can help give cancer patients like me (but without my resources – I am really so, so lucky) a beautiful photo book to help each remember the good times, to encourage them in the bad times, and to help their loved ones remember the good days, always.  It’s stunningly beautiful, and done in partnership with Bellflower Books and Crickett’s Answer for Cancer, who you know from our lymphedema project.  Please go read more about the memory book project, and support her, as she has supported me so many times.

Thank you.

111 Responses to Tired and hurty and scared.

  1. Amanda says:

    Susan, Susan, my brave friend. I know there are so many wrong things to say, so I’ll just say that knowing how much you have taught me, through a tiny screen and words, your boys are chock full of spirit, wisdom and love from their closeness to you.

    I wish I could carry your pain. xo

  2. I love you. I pray for no pain, no fear, of course healing & miracles, and your peace – peace of heart and mind that the answers to all the questions come to you.

  3. katstone1 says:

    To read your words, as you go through this … it’s so frustrating that we know so little about cancer and what it can do and how to stop these damn seeds. It makes my heart race and my breath short and the tears well thinking that there’s nothing I can do to fix it. You are so beautiful and brave. Your sons have such a beautiful and brave mother. That’s the only thing in all of this that is certain to me.

  4. Jackie says:

    Please know that you don’t have to be strong or brave or happy for us. We are here for you no matter where you are in your journy. We are your soft place to land when you can no longer be those things.

    Save up your strength for those beautiful boys, they are what’s important. (of course, I know you already know that).

    I’m sending all my extra strength and love you way today, and always.

    I know this is probably a silly question to ask, but is there anything that your readers can do for you? Is there anything your family needs? Please let us/me know and I will do what I can to get it organized for you.

  5. (And hear, hear for skipping the pink ribbons and instead putting time and donations and advocacy towards programs that strive for a CURE and give tangible help to patients.)

  6. In my humble opinion, you should feel free to write and share anything with your loving readers– the hope, the fear, the sadness, the joys, everything. We love you in all of it, and you should never fear alienating anyone with your honesty.

    All of our thoughts are with you Susan, through it all.

  7. Dearest Susan, I am praying for reduced pain, healing, and research with every ounce of my being. You are so right about the focus needing to be on something other than the pink. We are past that….

    Love and hugs—

  8. Laurie says:

    If your truth is tired and hurty and scared, then we are privileged that you choose to share it with us.

    Of course it’s difficult to read as I’m sure it’s difficult to write. No one wants to know that a wonderful person is in pain, that she is facing these deep fears. But that is when we all need support the most.

    I am so thankful that you have such friends and companions physically present for you. There is no greater gift than that, except for the love and friendship you give that inspires that kind of devotion. Holding you in my heart, I truly am. (This was also so beautifully written, Susan. So well expressed and I’m better for reading your words today. Thank you.)

  9. justenjoy says:

    Oh Hun, don’t feel you have to be strong for others or show a brave faxe. Just be who you are in the moment. We love ALL sides of you.

    I hate what you’re going through. I hate cancer. Love you, though.

    • Mir says:

      What Judy said. I wish I could take your pain and worry and fatigue away. But don’t ever feel like have to hide it.

      Thinking of you. Hoping you’re finding moments that make the icky parts bearable.

  10. Gill says:

    Susan you are an inspiration, always, even when you are tired, hurty and scared. Sending you love and hugs xx

  11. jodifur says:

    I think about you every day. All my love.

  12. slouchy says:

    Of COURSE you’re scared. If you weren’t, I’d be worried about you. I’m so glad that you wrote this down. Did it feel good, to confess it? We’re here through your triumphs, successes, pain, and sorrows. All of it. When we tell you that you have amazing grace, that does not mean that we expect you to be superhuman. Just BE. Be any way that works for you. And we’ll all still be here, with you, holding your hand, listening, loving.

  13. Kelly Kruger says:

    Susan, you never have to apologize for writing from your heart. Your readers are eager to share some of your pain as you express your raw feelings. Maybe together we can somehow find a way to best help you navigate through the most challenging times. Your sons are wise beyond their years and I think that we can look to them for guidance.

    Have you heard of having a ceramic cast made of you holding your child’s hand? I don’t think that it is ever too early to preserve special memories.

  14. justenjoyhim says:

    That should be “show a brave faCe,” which I’m sure you knew.

    Also, I want to say that writing out some of the not pretty stuff gives people a real look into what life with cancer is like. And it’s NOT all pink and pretty. I think that’s important for people to know.

    Heart you.

    Judy

  15. Amy says:

    I hate that you’re going through this. I am so sorry that you’re having such a dark day. Maybe the sun will shine brighter tomorrow.

    I hope it helps to know how often I think of you, several times a day, at least. You’d probably think I was creepy and a stalker if you knew how often! 🙂

  16. Susan – life isn’t always pretty, as you know far too well, and neither is the internet. You don’t have to pretend online – that’s the beauty of the internet. You can just be who you are and say what you feel, and you can know that your online friends are always here to listen and to support you. It’s a virtual slumber party all the time, no matter if we’re laughing together or crying together.

    And you are strong – to come out and say how you feel, that is far stronger than anything I’ve ever seen.

  17. misty says:

    Being scared is not the opposite of brave. You can be both. You are brave. You can be scared too. I hope the fear and pain go away and you have many more days of laughter and snuggles.

    I think of you often.
    xo
    Misty

  18. fran53 says:

    Sweet Susan… Thank you for being so incredibly brave by sharing your current status of being “tired, hurry and scared.” Also, thank you even more for verbalizing that “pink ribbons” and other such pink fluffy merchandise can be put aside to further breast cancer research causes at the clinical level.

    My heart and soul goes out to you as you live with severe pain from the metastasis of the lethal “seeds” going to your bones. I am so sorry for you. Perhaps it is time for you to have a narcotic infusion via a pain pump so you can regulate the IV infusion of narcotic according to the level of your pain? It would be more ideal now since you have a medi-port now. A narcotic pain patch like Fentanyl might give more relief, too.

    Save your strength for your lovely and adorable sons. I pray with all my might that you find relief, comfort and solace from your ever present pain soon. It’s alright to be “tired, hurry and scared.” I commend you for your courage, wisdom and bravery to say so. God Bless dearest and sweet Susan – He is with you always….

  19. fran53 says:

    Make that “hurry” – not “hurry” darn this spell checker in my “smart” phone, really??! ; )

  20. fran53 says:

    HURTY!!!!!!! Grrrrr…… :$# ;”!*;)’!!!!

  21. Cheryl says:

    I have no words….sending you love, prayers and hugs for you and your family.

  22. Suzie P. says:

    I don’t know that I can say it more eloquently than Jackie does: “Please know that you don’t have to be strong or brave or happy for us. We are here for you no matter where you are in your journey. We are your soft place to land when you can no longer be those things.” But my thoughts are the same as hers – we are your soft place to land. You are so kind and generous to share your thoughts and struggles with us. It gives me so much insight into who you are and why we all love you so much.

  23. *m* says:

    Words fail me — as they so often do. But even in times of fear and pain, they never fail you. You are a wonder.

    I hope that the pain management is better today, and that you are having many restorative cuddles with your sweet guys. Your family pic is right next to my computer where I see it and think of you dozens of times each day.

    Heading over to Elena’s site now — sounds wonderful.

    Love to you and yours.

  24. Stimey says:

    I wish I had words. I wish I had more to give you than just my love and respect and friendship. I wish I had a way to make this better for you. I wish there was a cure. I wish you could know just how much I care about you. I wish you could know how much I love your kids and your husband and that I will always do everything I can to help them. I wish you had never gotten cancer. I wish no one ever did.

    I love you, Susan.

  25. Cindy says:

    Just like everyone else who has already commented, I feel that this should be the place where you let yourself vent without reservation. Know that your struggles are being held and offered up in prayer that they be eased. You are a special person for sharing your journey so eloquently with us in the midst of your pain and suffering. I pray that you feel the love and healing energy that we are sending to you.

  26. Donna W says:

    Thank you for your honesty, for not painting a false picture of what you are going through. You are my hero. My thoughts are with you often.

  27. Dear Susan, tired, hurty and scared I bet hardly describes it – but you are also full of grace and humour, even if you hardly feel those: they shine, as always, through your words. Laundry?! Really?!
    May the love and grace that surround you bear you up in these hard times, bring you comfort and carry you to where you need to be. Much, much love to you and the boys, and Kristen and Jess and all the other friends who are physically present to help you out. Kia kaha, dear friend.

  28. baasheep says:

    Oh lordy no one expects you to be brave all the time. I’m sorry your hurting and scared but I thank you for sharing your journey so far both the ups and the down. I don’t post very often but I found your site soon after my mother passed from cancer in 2007 and your writings have and continue to be a comfort for me. Your boys are lucky to have you as a mother. As you said yourself no princess fights alone!

    Assvice portion of the comment but it might be worth you and your husband setting alarms for when you need to take you meds, that way if you sleep thru the alarm or forget to set it etc he can be the reminder. Also I’m not sure if you already take it but my mother found oxynorm really helpful for breakthrough pain, as far as I can remember it worked within minutes.

    Take care
    x

  29. May God Bless you, Susan

  30. Malena says:

    Thanks for your honesty and for sharing your wonderful blog. It is such a gift to us all, and down the road it will be such a gift to your boys as well. My heart goes out to all of you.

  31. Susan, this post is so touching and moving. I barely know what to say except that you are in my prayers and my heart. You are a brave, brave woman.

  32. Lisa B says:

    Susan, this well-written post removes the rose-tinted view that quite a few people (not your readers) have of cancer. I just wish you didn’t have to be going through it. We’re all here to listen and hug and ‘just be’ by your side in the blogosphere. I wish I lived close enough to visit/help out.

    Holding you in my heart and sending you peace and rest wishes.

  33. MamaTrack says:

    Like everyone else, I’m inspired and awed by your courage and fight. And your beautiful kids. And your passion. Unlike everyone else, though, I live in Bethesda. And if you need anything, please feel free to drop me a line. I’d love to help.

  34. carosgram says:

    Isn’t it strange how when we hold our children everything seems brighter? Thinking of you and praying for you and your family.

  35. throwslikeagirl74 says:

    I know I’m a quiet Mother with Cancer lately, but you should now I’m always thinking of you. 🙂

  36. Dear, dear Susan,
    I’ve been wondering, since we hadn’t had a post in awhile. I would rather hear the painful and the difficult than nothing at all. You are constantly in my prayers, and in my thoughts. Please, keep telling the truth even when it isn’t pretty! It has to be heard.
    much, much (much!) love,
    Elizabeth

  37. surrounding you with virtual hugs – people need to know that you’re tired and hurty and scared – thats the real face of cancer not the’perky pink survivor’. Sending you my love and friendship across the many, many miles. Keep hugging those boys of yours

  38. Thank you so much for your honesty.

  39. magpiemusing says:

    I’m sorry you’re tired and hurty and scared, and I wish for all the world that you weren’t. I so want to do something. Love to you, Susan.

  40. Karen G says:

    Susan,
    First, I hope your current treatment helps you a great deal, and very soon, of course.
    Secondly, thank you for being a source of inspiration, and of information about IBC. I have told so many of my friends about IBC, because of you. None of us had heard of it before.

    I would like to know – when you’re tired, is it helpful to receive encouragement, even from folks you don’t know? I sometimes hesitate to comment because we haven’t actually met, though I believe we are friends of friends of friends. So I wonder what you think.

    In any case, take care, may your current treatments work, and may you continue to build up your strength.

  41. Elaine says:

    Many prayers lifted to you today and every day. I’m still wishing on stars. You’ve opened the sky for me.

  42. Aimee Shaw says:

    Susan,

    So sorry you’re having to go through this. It is hard to know when to do what- in some ways we’re holding on, while trying to figure out how to let go. I am sure to sit and write “letters for each of their birthdays until they turn 21” would feel like a sort of concession in a long, hard fight that you’re still committed to win. On the other hand, to not consider the “when” is to practically live in denial, which would be detrimental to those we love, and must leave behind if we go. I think you should do it now. If they end up being not needed, you can store them all in a box and give them all over on that day in the future when it will mean something that you contemplated, prepared, and held on for that specific time. That is the whole reason I write- my children were far too young to understand any of what I went through, and only experienced it through the self-centeredness of childhood. I just hope for a day, whether I am present or not, that they can mature to a point of being able to read what I wrote and have a deeper and more meaningful connection with me that what we can have now. I’ve read that we have to grieve our own deaths, and I think for us moms, we have to grieve for our children too. Writing about your fears of abandoning them might mitigate (obviously some time in the future when they’re able to read your words and allow them to penetrate) any abandonment they do feel, if it comes to that. Write them letters, if you need to. I agree with the sentiment of everyone else- I appreciate that you’ve been so honest and transparent here, and you are so right- the battle is hard, and bloody, and not always “dainty pink.” I recently went and had a new photo taken for the annual “wall of hope” (breast cancer survivors) that appears in our local magazine. When I went to view the photos there were two other elderly women there viewing theirs. The photographer asked the # of years of survivorship, and I belted out “8 years”, and the one lady says, “well I have you all beat- i have 30 years”. well geez…..i’m 38 years old! i wanted to tell her that the reason she has me beat is because she’s OLD! lol. i mean, she had to have been in her late 70’s, or into her 80’s. it’s just not the same thing, and i certainly never thought it was a competition! well, then the other woman, also elderly, says something about being in treatment. so i tell her i have been in treatment for 8 years. she couldn’t believe that, and said that she had only had radiation and a lumpectomy- stage 1. i tell her, “oh, well that’s why i’ve been in treatment for 8 years, because i had a metastatic recurrance, and was already stage IIIc when diagnosed.” without even asking me about it, she tells me that, “well, i caught mine early. i went to the doctor and when they told me they were ‘going to watch it’ [the lump], i demanded that they do more tests because i wasn’t just going to watch it.” her implication was that i had not caught mine “early enough”, that i somehow neglected my body, or allowed my doctors to be apathetic. i share this because it falls into that “rah rah, i wear pink” club, and demonstrates how it’s really hard to find the understanding, even among other breast cancer survivors. IBC is horrible, Susan. it has taken so much from me. it robbed my kids of a “normal” childhood. nevertheless, it has had a purpose and been a blessing too. i just hate that you’re in pain and suffering. i think your willingness to share that too will serve to someday give an insight to your children that will bring them peace………. you are held tight to me in prayer, dear sister.

    • What she said. Please read this, dear commenters. What she said.

      • Bon says:

        weeping. love you.

        i’ve got little to add to what Aimee said, except…yes, write the letters. we all should. gifts to the just in case, whether we are there or no.

        and at the same time…you’ve been writing the letters for five years. here. they will never not know, Susan. they will never not know.

        (and about the letters…tell us their birthdays, if you like. and i could add them to my calendar, and send them a msg (an email, a card, whatever you like) to them every year, if and when the birthdays come that you are not here. i’d tell them something you taught me, here. i would tell them how much you loved them. we all could.

        entirely your call. but i think i would want someone to do it for mine, esp while they are children. you have given us you. if the time comes, can we give a little of what you’ve given back to them?)

        let us know. i would. we would.

  43. loran says:

    You are so brave – and how could you not be scared. Cancer sucks in a million different ways and I wish I could take away the pain.
    Your boys know the depth of your love – and children are wise – they hold your love and feel your arms today, tomorrow and for always. Thank you for bringing the real to the table and reminding us we can’t rest. Sending you continual love and prayers for healing/miracles/rest and pain-avoidance. You are loved in so many ways and have made the most profound impact on your family, your friends and the great wide world of the web. What an amazing gift.

  44. libby says:

    I read this as a daughter who lost her mom to cancer 8 years ago when i was in my early 20s. And i want you to know that your babies WILL be ok if you are not here. I know they’re younger than me, but I have survived and thrived and have only perfect memories of my mom and I it hurts me so bad to know that she probably had all these same thoughts and fears. You and the lovely moments you are sharing with your boys are all they need. They will have a wonderful life and remember only wonderful times with you. And they will be ok. AND they don’t need anything from you. My mom made DVDs of some home videos of us and that was nice, but I don’t need it to feel close to my mom or know that she loved me. Pictures are good for your boys, since they are young. But you don’t forget what your mother’s love is like. Even though they are young, they won’t forget.

    I hate cancer so so so much and I wish it wasn’t you. I pray for a miracle for you, and wish you nothing but peaceful days filled with love and comfort.

  45. I’m glad you’re honest. We need people to be like that, so those of us who don’t know can understand better and those who do can feel less alone.

    You fight this battle with such dignity, but dignity doesn’t have to mean silence and it doesn’t have to mean rainbows. We will always hear what you have to say, even if all we can do from afar is offer virtual hugs in return.

  46. Susan, I’m so sorry for all that you’re going through. Know that you have many who are thinking of you, praying for you and your family, and sending you love and light. You are so very brave.

  47. Gayle says:

    Susan, I’m thinking of you every day. Wishing you comfort during these really hard times.

  48. stardustdawn says:

    Gentle hugs, and my heart is with you. I pray for you every night.

  49. YP says:

    Susan, every time I read your column it inspires me to appreciate my life and realize how trivial all my problems are. Thank you so much for sharing your journey with us. I’m so glad you are able to enjoy time with your children – they will know in years to come how much you love them.

  50. Heather says:

    Oh you dear, dear girl. I have seen my mom in law, my grandfather, and stepdad suffer terrible cancer pain. It is indescribable and I am SO, SO sorry you are in it now. my fiancé has lymphoma and we are fighting it with all we are. Cancer SUCKS, and I pray for the day it is eradicated. Hold tight to your babies, take your meds around the clock, and fight like a mofo. You are not alone. You are loved. We are all praying for you.

  51. Annette says:

    Tons of prayers coming your and your families way.. Gentle hugs..

  52. annettek says:

    You may not always believe you’re brave, but sometimes the bravery is just in the willingness to tell your story, the bad as well as the good. I pray you have less pain and more little boy snuggles.

  53. johanna says:

    Out of the night that covers me,
    Black as the pit from pole to pole,
    I thank whatever gods may be
    For my unconquerable soul…

    I read these words somewhere today and thought of you. I have been following your brave journey for awhile and I do believe that you have an unconquerable soul – you are a such a beautiful gift of love and light to everyone who knows you and to those who have the pleasure of reading your words – to remain so eloquent in the face of great pain is truly remarkable. Cancer will never, ever conquer your beautiful soul. Remember that truth in the darkest of times, when fear is overtaking you. I am praying for you tonight.

    • Thank you. Thank you all, for your comforting and encouraging words. I’m not in pain this evening, and after a lovely dinner and play with my boys (and evening books and snuggle), I’m heading to bed, to rest. I’ve been up for three hours … and I’m trying to be appreciative of that progress.

      I’m trying.

  54. Elesha says:

    Yes I cried ready this, because I feel every single word you say as a women and mother. What you are going through could be any of our tomorrow. It’s life. And it sucks. What you said about your boys being enough, and that they will be ok. This is something we should all be teaching our kids now! It never occurred to me. I must start teaching my boys that no matter what they will be ok and they are enough. Once again you inspire me. I will pray right now for your pain to be managed and for GOD to give you some more awake time and energy with your boys. And always a miracle . X

  55. Loukia says:

    So heartbreaking to read. Of course, I cried. I cry because I’m so sorry for what you’re going through, and because as a mom of young boys, I know how scary the future, the unknown, can be. Cancer affects us all, and can become our reality in a blink of an eye. My thoughts and prayers are with you.

  56. PrincessJenn says:

    My heart breaks reading this. Your bravery in sharing the truth without the sugar coating is amazing.

  57. Natalie says:

    I’m not quite sure how you seem to be able to find the perfect words to invite us into your head like this….but I am thankful that you have and you are forever in my grace, forever, for allowing me the chance to try to understand, at least in some limited capacity, how cancer can affect a woman of my age. I’ve stood beside my mother and fought….knowing that it was a flip of the coin that it touched her and not me. The coin can always flip. always. I am glad you are having a decent night. Enjoy resting with a quieter mind tonite. I am sending you as much light and love as possible.

  58. Amy says:

    All I can say Susan is that I love you. Your boys have many “letters” from you in so many forms. Until tomorrow!

  59. Tricia says:

    Wow. I love that you write the good and the bad and the everything. It’s good for you, it’s good for your boys, it’s good for us.

    As another mother of two little boys, I worry often about this sort of future. I watched my mother fight breast cancer and survive only to get caught again by those cells that were already spreading so many years before. As an adult I got to care for her and be with her the last 6 months of her young life. I know she was going through so much of what you are going through now, only she didn’t have the words or the courage to share it. What a gift you are giving your children by writing…and by truly enjoying each and every moment you can.

    “Children will not remember you for the material things you provided, but for the feeling that you cherished them.” – Richard L. Evans

  60. Sue Farrell says:

    Susan, thank you for writing. Your blog friends love you and pray for you. It is so scary when we don’t hear from you for a while. May you find comfort in the love that surrounds you.

  61. Karen says:

    I think about you and your family all the time. You’re the reason I go to work everyday and try to find new compounds for early detection of cancers. And, as a new mom myself, I hope that one day someone finds a way to beat back this b*tch (aka cancer) and stop taking mommies and daddies and babies away. Your fight is my fight.

  62. Sammie Love says:

    Dearest Susan, my comrade, my sister,

    I so understand the darkness you felt today and the very real fear that lives in you every second of everyday because I have lived it until i was told i was cancer free. I still have those days on occasion wondering, “Is it really gone? Will it come back?” I wrote those beautiful agonizing letters to my family and left them with my attorney for distribution. There is nothing more terrifying than imagining the future of your children without you in their lives, but there isno greater gift that they will cherish than to have your words and hopes and dreams for them to hold in their hands.

    This has got to BE the best Be Enough post I have read and you don’t need to apologize or get anyone’s permission to feel like you feel! My heart is aching for you and your family and my prayers are forthcoming for your healing and recovery!

    BE WELL my dear friend,
    Sammie

  63. patsy says:

    Dear Susan, your words are so strong and make me really search my soul. i don’t know if my trial with cancer is through, only time will tell but I thought I would pass something on to you. My daughter is studying to be a nurse. The other day her instructor asked the students who had heard of IBC. My daughter was the only one to raise her hand. The instructor asked her how she knew about this cancer without a tumor, and my daughter replied, “because my mother told me.” And her mother knew because of YOU!! You are passing on so much needed information to many so they know what to look for. Thank you Susan, I look for your blog every morning because you make me a better person. Blessings to you and yours

  64. clara says:

    What can I say, except: I am reading. Whatever you say, I am reading.

    You have taught me so much about cancer, about living with grace, about soldiering on, about admitting it’s time to sit down for a bit, to gather strength.
    Open your arms wide. Gather strength.

  65. Thinking of you and praying for you and your family.

  66. Lindsey says:

    Susan,

    I don’t often comment, but have to this morning. It hurts to read your pain, to know you are in this pain now, after over four years of reading your every word, rejoicing with you, waiting for results with you, and crying with you. You’ve been so brave and fought so much harder than anyone should ever have to on this roller coaster of cancer treatment.

    Praying for peace for you. I don’t often pray, but there is a constant prayer on my heart for peace for you now.

  67. Ella says:

    Please don’t ever feel you have to write things here that are easy or fun to read.

    I am thinking of you xx

  68. Linda Lawrence says:

    Thanks, Susan, for being honest. We were concerned that you hadn’t been blogging. Love you.

  69. I’m praying for you, too, and wishing you strength and peace and smiles and many, many more hugs from your children and those whom you love.

  70. Susan, We want you to be you – that’s who we love. ❤

  71. Lara Anders says:

    Thanks for your words. Always praying for you.

  72. Karen says:

    I love thinking of you cozying up with your boys, just quietly drinking each other in. These are happy memories they will always carry.

    I hope tomorrow is a little less tired, a little less hurty, and a little less scary.

  73. Jana A says:

    Susan, I saw your picture on FB this morning and couldn’t help but notice that your smile is truly a geniune one. Not one of “posing for the camera” but one of “I’m glad to see today, even though I have to sit through chemo again.” It’s refreshing to see you smile even though I know days are dark, exhausting, painful and scary. Your outlook on life and death even, make me proud to know you. And even though our in-real-life contact is limited to a session and elevator ride at Type A, I’m proud to call you someone I know. You’re so strong. Such a fighter. And certainly such an inspiration. Prayers for peace, comfort and beauty today and always.

  74. Molly says:

    I don’t know what to say. So I’ll just say you are a beautiful writer. And I’m sorry. So very sorry. No one should have to think about this shit.

    It makes me sad and angry for you and for this world.

    ((((hugs))))

  75. Nicole says:

    I’m just so sorry.

  76. Manic Mommy says:

    I’ve left this window open while I tried to think of the right thing to say. I still don’t have it. I am sending strength and peace. Know that you are building wonderful, loving, calming memories for your and your boys.

    I am thinking and praying for you and your family.

  77. Louise says:

    Long time lurker posting though she doesn’t know what to say. Abiding with you along with so many others….

  78. binkytowne says:

    Big love to you Susan. Thinking of you today❤

  79. Lahdeedah says:

    Bon’s words. Your words. Aimee’s words. All these words. All hitting me at the center of my soul. I hate that you are tired, hurty and scared (even though I had to smile at the word “hurty”). As I read your words, Susan, I am struck by the injustice of a brilliant life being tamped down, even temporarily. What I love about you, Susan, among many things, is that you refuse to be tamped down. You are not afraid to live life in the extremes…to maximize your considerable intellectual powers, to love your family with every ounce of energy you have, to creatively and convincingly advocate for cancer research, to lovingly reach out to us. You’re an extraordinary person in every sense of the word. Your children already know that deep down in their souls, and they will continue to be shaped by the experienes they have with you…looking out at the stars on a sleepless night…who would ever forget or not be profoundly changed by that experience? Who could not be changed by reading about that experience? Thank you for sharing all your beautiful words, Susan. I wish you much love and peace.

  80. leethrash says:

    Susan, know we’re thinking of you and wishing you STRENGTH.

  81. So much love to you it’s bursting out of my heart.
    Peace, dear Susan.

  82. I don’t know if you can feel it, but I’m giving you gentle hugs right now. Gentle hugs and psychic margaritas. And an enchilda. Everyone needs an enchilada.

    If you need anything – really, anything – just ask. We’re here. And we’re here for both the positive and for the negative. Never forget that. Truth isn’t always easy, but it’s important. Thank you for sharing this journey with us…even the terrible parts.

  83. We are here.

    We are reading, no matter what you write. Because everything you write is good food for thought, everything you write encourages us to treasure the moments with our children and spouses and friends, everything you write touches somebody, in some way.

    When your boys talk to your friends or husband or family (or read your letters or blog at the appropriate times) they will know how very much you loved them – how hard you fought. Other people and things will help them remember the details, and those in turn will help them recall the feeling of the snuggling and the love.

    We are here. I am praying.

  84. Megan says:

    Susan,

    I lost my mother-in-law to IBC ten years ago. She was 50 and my husband and and I were four months shy of our wedding day. It was not pink ribbons. It was painful and had metastasized and she could not beat IT.

    Please do not hide your fear, your anger, your sadness. You are teaching Widget and Little Bear resilience. Kindness. Love. Strength. And more love. You are teaching them that life is not always roses and unfortunately YOUNG Moms get cancer. Give yourself permission to be scared and angry, I am in tears FOR you. I have been praying for your cancer to just completely go away. But we need the science along with prayer and clinical trial at NIH.

    I hope you know how much your blog means to me and if you are scared or angry, it is ok to tell Little Bear and Widget. Even if for some reason you are not here in a year, you will always be their Mom. But I pray that you are here in thirty years and can say you are a THIRTY YEAR SURVIVOR.

  85. Saskia says:

    Thinking of you… wishing you all the joy your heart needs right now.

  86. you are in my thoughts and prayers so, so often

  87. planetnomad says:

    I think it’s more important to be honest than to put on a fake happiness. Who knows how your words have helped someone today? And even when you are scared, you are still being brave. And I think you rock and I’m praying for you.

  88. Thinking of you often and wishing you comfort. If only my tears had the power to heal.

  89. Dawn says:

    As you taught me – just do it afraid.

  90. Michelle says:

    I just want you to know that I’m here, and I’m reading. Every word…

  91. Jennifer says:

    I’m so sorry you are going through this. It’s not fair.

  92. These are your love letters, and if your boys ever read them, they will know not only what an amazing mother you are, but what an amazing woman you are. xo

  93. I’m late to catch up and not sure if you stop reading comments after the 90th one but…

    I have to tell you something.
    I have never been so moved by such raw honesty as I have by your posts.
    The world needs to hear what you have to say about being a mom, living with cancer, and fundraising for Research and a Cure.

    You make people stop and think. You make me find gratitude in every small thing. You have made me a better mom simply by sharing your story.

    I’m not perfect and I accept that. I am good enough but I never want to stop finding ways to improve either.

    And one of those ways is to help people start thinking about cancer not in terms of wearing the right color or cheering. But instead think about cancer as the enemy that needs to have it’s ass kicked by research and treatment so it gets the message to leave us alone.

    Much love and prayers for a cancer ass-kicking,
    J

    • Thank you, Janine. That’s really nice of you to say. This is an honest accounting of my battle, and I’m glad to hear it helps, a little, in any way possible. I with I were a biologist and could research for a cure myself, but I’m not. This is what I can do.

      Thank you for listening — and for taking what you hear and moving into action.

      Oh, and I read and re-read and re-read every comment. Always. Sometimes I reply by email, sometimes here, and sometimes I have no energy to do either. But I treasure my comments and draw strength from your encouragement.

      Love,
      S

  94. Susan says:

    Susan, your grace and your beautiful soul shine through in everything you write–the tired, the hurty, the sad, the happy. It is a privilege to sit with you and listen to your words. We love you and lift you up every day, no matter how you are feeling….so as so many others have said, write here as you are moved.

    Wishing you swift pain control, and many happy snuggles.

    Of the things you wondered about: ditch the laundry! But however you are spending your time at home these days, your boys will ever and always know that they are loved.

    And I so wish you didn’t have to go through this.

  95. Deb says:

    Cancer is a gruesome disease. I had a patient die last week, waiting for her scan. All of the other patients looked a little, a lot, freaked out. I told my patients the truth, that we all have to die and it was her time.

    I can imagine facing my own mortality with young children, it’s not the same as living it but I can imagine. I think I would be awfully angry for a long time and then I would try and fit everything in and tie up all my loose ends and pack as much into each day as I possibly could. And then I would cry every night because I wouldn’t be able to see my children grow up.

    I’m so sorry Susan. There is no fairness in this.

  96. JoC says:

    Thank you for your honesty. Courage does not mean absence of fear but rather action despite fear. Thank you too for drawing our attention to Aime’s comments on the 17th about the race/competition and implied lack of action really hit me. Gentle hugs & warm fuzzies. JoC

  97. Susan,
    There are few days that go by since we met in May that I don’t think of you.

    Your clarity and honesty are stunning. I felt that when I met you; I feel that now.

    Together. That is how we fight cancer. Together.

    With love,
    jody

  98. patti says:

    so grateful to read your entry-so very honest, real, and painful. I am one of those chemo nurses who act as part medieval torturer, part saint…depending on if we can find the vein the frist time. Glad you have gotten a port…will be following your journey and praying for you and your fellas

  99. NOR says:

    I’m glad there’s good tv…😉

  100. […] is so very difficult and the side effects (nausea, weakness, sleepiness, constant fatigue) so very debilitating that (speaking only for me) I just can’t see doing it every week for the rest of my life if I […]

  101. You are right Susan. There are times when we really feel so down but we definitely have to move on for our kids.

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