Pain

I’m in pain, I whispered to the organizers of last weekend’s retreat.

  • They brought me a couch to lie on for two days, and we developed ideas for coping with chronic pain from my metastatic cancer, among many other coping tools and discussions that weekend.

I’m in pain, I softly explained to a stranger who saw my tears and stopped me in the hall.

  • He said comforting words, put his hand on my shoulder, and began to pray (more about this story later).

I’m in pain, I cried to my mama, and to my husband’s mama.

  • They tucked me in bed and brought me water to flush the chemo out of my system.  My father, and my husband’s father, bustled around the house, playing with the kids and finishing projects that we had left undone since their last visit.

I’m in pain, I cried to my sweetie,

  • He cuddled me and comforted me, night after night, and arranged the pillows about me.

I’m in pain, I cried to my friend,

  • And friend after friend after friend has brought me casseroles to free up my afternoons for snuggling with the children, comforting them as well.

I’m in pain, I cried to my blog,

  • And many, so many of you have brought me sweet words of comfort and calm and words telling me that my words have helped you, or my IBC work helped a friend, or that Crickett’s Answer has given out lymphedema sleeves and gloves to 52 needy women who didn’t have what they needed before.

I’m in pain, I cried in my doctor’s office on Thursday,

  • She ordered CT scans and MRIs, passionate about finding the cause.  Why would the pain be increasing when the chemo was attacking the cancer cells inside?

I’m in pain, I told the pallative care specialist,

  • He tripled my dose of oxycontin, increased the other as-needed drug, and reassured me that I’m still on the low-middle end of need.  He has patients on ten times my dose, and they’re functioning.  If I need this to function, to sit and stand and walk, then it’s fine for me to have these drugs.  That’s what they’re for.

I’m in pain, I told the psychiatrist I found after it all went to shit in July and I was hospitalized for pain that took away my normal life.  I’m sad because I’m in pain.  Do I need more meds?

  • No, he said.  This is real sadness, because you’re in pain.  And he offered me a chocolate bar, dark with sea salt sprinkles.

I’m in pain, I whispered to my sweetie as we drove back home, nibbling the chocolate and clutching the scrips.

  • I know, he said, but I love you.  And he took me out for pizza in the warm fall day.  As the sun shined on us, I smiled again, for all of it is do-able because of those three words.  I love you.

98 Responses to Pain

  1. Jana A says:

    This is beautiful. Just beautiful. I wish I could take even part of your pain away, but I can’t so I’ll just pray for comfort for you. And for many more “I love yous” and good days.

  2. I feel like anything I say is so insignificant. But I just want to say – thank you for sharing your story. Love is such a wonderfully powerful thing. Sending strong thoughts your way.

  3. 3DayMom says:

    Susan, you have such a gift. Thank you for all you share. What you write is so real and honest and open. And now I need a chocolate bar wtih sea salt sprinkles. Love and hugs and prayers coming your way constantly. Only 32 days unitl the DFW 3-Day. You will be with me every step of the way. If you can fight the fight you’re fighting, and with such beauty and grace, I can certainly handle a few shin splints and blisters!

  4. Susan says:

    Oh, Susan, this made me cry! You have such an amazing ability to look for the love in your life and focus on that amidst all the pain and illness. And you make more love in the world by sharing your story with us.

  5. I wish I had the power to take your pain away. I pray that between your sweetie, your family, your friends, and our heavenly Father that the pain you are feeling will be relieved or even taken away all together.
    Please know that you are loved by so many and for always.

  6. I hope you know what an incredible gift you are giving to others who are in pain and are unable to articulate it so eloquently. My prayers continue to be for strength, healing and peace for you and your loved ones.

  7. like your friends and readers, i too wish i could take your pain away… lessen it… something. your strength is astounding to me.

  8. Jo Major Ciolino says:

    My heart is in pain reading this – I want so much to do something, ANYTHING to make this stop. I feel helpless and angry and frustrated and I want you to break through this wall of pain and feel release, rested and recharged. I’m going to insist on it – my prayers for you have always begun with “please,,,” but now they will begin with, ” Starting right now…..”

  9. Karen says:

    Susan you are so easy to love and admire – you are a remarkable woman! You touch the lives of so many – with your campaign about IBC and breast cancer research, campaigns for sleeves, setting such a wonderful example to women through your work (my 8 year old daughters know all about you – WhyMommy the space scientist and how you promote the work of the women in your field) and as a loving and beautiful mother to your boys.

    I am so sorry to hear how much pain you are in. I am sure they will manage to control it soon so that you can continue with your life, enjoying your children, husband and family.

    You inspire me Susan and my girls! We send you and your family much love and positive thoughts

  10. You are such a gift to us. I am only sorry you have to hurt to teach the rest of us true grace. You are amazing Susan. I’m thinking and praying and whatever-else-gooding for you every day.

  11. Karen C says:

    I’m saying prayers for you, Susan! And we have a new little angel in heaven who is sending blessings your way. Hugs! Karen

  12. Barbatthebeach says:

    I want to hug you.

  13. Kelly Kruger says:

    It certainly “takes an army” doesn’t it, Susan? And I am so glad that you have one to help you navigate this painful road that you are on.

    Bone pain can be incredibly debilitating and an evil side effect to cancer that has found its way to the bones. There are multiple classes of pain medication, and depending on exactly what is causing your pain, another option may be more effective for you. Keep trying. There are certain anti depressants that can also help relieve nerve related pain in bones, so you might find that one medication might offer a dual purpose. Radiation, might be an option to relieve bone pain in a particular area, or you might find treatments that are currently under investigation, or more novel ones, like cryoablation, which has been used more recently to treat bone pain at Mayo Clinic.

    Then there are approaches that are not evidence-based, like dark chocolate bars with sea salt sprinkles, long soaks in a hot bath, a massage, cuddles with loved ones, and a relaxing family getaway. Keep using everything in your arsenal, and allow others to continue to help and offer distractions. Keep working closely with your team to identify what it is going to take to bring you the greatest amount of relief. Praying that relief will come soon.

  14. magpiemusing says:

    Oh Susan. I wish…

    Love to you.

  15. Oh Susan,
    I wish there was somethng I could say to take away the pain. Thank you for your writing, and thank you for allowing us to share on this jounry with you. I hope that by typing this you are able to release a bit of the mental pain at least…

  16. awessen says:

    Many of us who have met you or known you are reading your blogs, and crying as we read them.

    You touch us in so many ways, as we cry with you and pray for you and just carry you in our hearts.

  17. Stella says:

    My friend, I cry for you. I cry and I marvel.

    I cry because there is nothing I can do to ease your paid from my keyboard on the other side of the country. I cry because life is unfair and you have two smallish boys that need you. I cry because it’s not me in your place and I really don’t understand the why of that at all.

    I marvel because you handle all of life’s trials with more grace than I could ever imagine possessing. I marvel because in your pain you think about and help more people than most of us on a good day. And I marvel because you are my hero in every literal sense of the word.

    I would take away your pain if I was able, Susan. I would that I could carry it for you even if only for a while…

  18. Amanda says:

    This call and answer warms me ven as it makes me weep. I’ve wished for so long for the power to ease your pain. Today I stand as witness to your courage and grace. Sending wishes for more cradling in love than crying in pain, sweet friend.

  19. Cecily says:

    Oh, my heart. Lady, your bravery…

  20. ilinap says:

    Your words stop me in my tracks day after day. I’m so sorry you’re in such pain. Hugs to you.

  21. Denise says:

    I think we all know how brilliant you are, but your light shines so far. You are amazing Susan.

  22. Bon says:

    Susan, i wish there weren’t pain. i wish love would take it away.

    but i hope that all the love here adds a little to the do-able-ness. i wish it were more.

    xo.

  23. Thinking of you always and hoping the drugs do what they are meant to do.

  24. Gerdur says:

    Susan You are a brave women, Hugs to you, from a Icelandic women.

  25. Anna says:

    You do not know me but reading your blog has changed my life. Praying for you always…

  26. We are here. I am praying.

  27. *m* says:

    Oh Susan, how I wish I could take some of the pain for you. I hope that your team has some way to remedy this quickly.

    I am not a churchgoer, but I am praying for you and your family and your doctors, and asking others to do the same.

  28. Alyce says:

    Susan, you inspire me – to appreciate everything I have, to play more with my kids, to live every moment fully. Thank you so much for being willing to put everything out there – sharing it all with us. I think of you and pray for you daily.

  29. I can’t remember how I found you, Susan, but you are so inspiring and I hope every day that someone or something will take away your pain. You are a wonderful mother and wife and there are so many people praying for you and sending healing thoughts your way.

    My mom was diagnosed with metastatic sarcoma in July and I cry every time you post because it’s so hard to travel this journey. My hope is that they find a cure immediately and find a way to take away your pain and have a completely normal and long life.

    {{{huge hugs}}}}
    Chelle

  30. Paula says:

    This is my first time reading and my heart is breaking for you. I’ll pray for more “I love you” time and less “I’m in pain” time. You are an inspiration.

  31. I love you. You are brave, and fighting, and so loved.

  32. Susan, I’ve been thinking about you often in the days since your last tweet. I’m so glad to see you posting again, but this made me cry. You are such an inspiration to me and so many others. My ex mother-in-law has multiple myeloma, and I’ve told her about you; in fact, she’s probably reading this as well.

    I wish there was something more I could do, besides pray and donate to the cause. Please know there are many prayers going up for you and your family from my little corner of Dayton, Ohio.

    Hugs to you.
    Leslie

  33. Chibi Jeebs says:

    Oh, Susan. I’m so sorry you’re in pain. This breaks my heart.😦 Sending bucketsful of love and prayers and gentle hugs and hair strokes.

    xoxo

  34. Jess Lippy says:

    I am so sorry you are in pain. I keep you and your family in my thoughts and prayers always.

    Jess

  35. Wordgirl says:

    I’ve only recently found my way here — but I am so touched by your words.

    Your blog and your sharing your journey as helped me navigate the early waters here as my best friend was recently diagnosed with metastatic breast cancer.

    I find myself holding back tears of gratitude and awe of you.

    Thank you for this space.

    Love,

    Pam

  36. {sue} says:

    It is so unfair. I would do anything to carry your pain and pass it around among all of us who love you. Praying you get answers. And that there is relief. (Did you see my email about pain clinical trial?)

  37. Allison says:

    I am so sorry you are in pain.

    I know you have an army of supporters helping you, giving you what you need, and I am glad of that. I also want to point out that you, too, have given others so much, through this blog.

    You have done a huge amount of good here.

    Thinking of you.

  38. mobu67 says:

    So heartbreakingly beautiful. I’m so sorry you’re enduring so much pain. But thank you for sharing your words with us. (((hugs)))

  39. nancyspoint says:

    I hate that you have so much pain. I wish had some meaningful words to say that would actually make a small difference, but of course I do not. I can tell you this, I will continue to speak up on behalf of those with metastatic breast cancer. I am appalled by the lack of attention it gets, even in October. I wish I could do more. I wish I had a “louder” voice.

    Your post is poetic and lovely. And you’re absolutely right about the power of those magical three words. And a lilttle chocolate can soothe in its own way too can’t it? My best.

  40. Jessica says:

    This had me in a fit of tears. I’m so sorry that you are in such pain and I wish there was an easy way to alleviate it, and make it all go away.

    Until then, I’ll just be sending my love.

  41. Brandie says:

    Oh Susan, I wish I could take your pain away. I’m so sorry. I’m thinking of you.

  42. Oh Susan.

    Here with you.

  43. Sandra says:

    There are tears in my eyes from reading this. My thoughts and prayers go out to you and your family. Your courage is amazing and inspiring. I’ve never met anyone who is as brave as you are. Your words have educated me on how insidious breast cancer really is. I’ve made it a priority to let people know about “pink-washing” and to make them aware that there are organizations who need money for research. I make sure that women know about IBC and Paget’s. I’ve learned so much from you and there is nothing I can do for you in return but send you my prayers. Thank you Susan.

  44. Rachael says:

    This is so beautiful. I’m sorry that you’re in pain.

  45. Karen says:

    I’m sorry you’re in pain. It’s a cruel injustice. When my mom was in pain from cancer, all I wanted was to take that burden from her and I loved her as hard as I could, hoping it would help. I know that it really didn’t make the pain better, but my mom felt every ounce of love I gave her and she told me how grateful she was for it. You were sweet and supportive of me
    when I lost my mom back in December, that type of love from you and so many others, literally saved me. I wish there were a way I could take this pain away from you, I have you in my heart and I hope you can feel that somehow. Revel in the love of your wonderful family.

  46. Amelia says:

    And even in such pain you manage to write so beautifully. Sending light and love.

  47. VDog says:

    So much love coming your way.

    The love will carry you on a soft bed while your strength keeps you going.

    Hugs, my dear.

  48. Linda Lawrence says:

    Love you!

  49. Kami says:

    Oh Susan, I’m wondering if a hot tub might ease some of the pain? Sorry if I’am totally off base here I just want some relief for you! Gentle hugs my friend.

  50. As horrible a the pain is, I’m glad it’s at the low middle end of pain needs and that there are patients on ten times the dose of pain medication and still functioning. I’m glad you are telling people you are in pain, because pain is such an isolating feeling. It’s impossible to convey the subjective experience to other people. I am glad you are telling your doctors who can give you more pain meds and figure out what is going on and other people to give them a chance to find other ways to help soothe your pain, however simple: a couch, a cassorole, and not so simple, like being told you are loved, you have helped others. No one should have to bear this severity of pain alone. Keep telling us, Susan. We are so many.

  51. Donna says:

    Can I please cuss and rail at the universe on your behalf? Please know that I and soso many others are really pulling/praying/railing at the universe for you…. and your little guys…. and your big guy too. Hugs and a hope for an answer to what you need sweetie.

  52. speechless… yet again. Love you and wish I could take some of your pain just for a day.

    x

  53. Amy says:

    This post is a gift from you to us.

    I pray daily for your pain to cease.

  54. I am praying for you (still)….because I followed Bon Steward here. I am in South Carolina. You don’t know me. Bon doesn’t know me either. But I know IBC. And I am praying for you. Know that. I pray for your peace…and relief…and continued moments to savor. You do that well…knowing and savoring…and loving still.

    Thank you.
    Cindy in South Carolina

    • Bon says:

      hi Cindy. nice to know you. amazing how Susan brings us all together.

      • Hi Bon. How true. Susan is a …very. special. force. indeed.
        I thank you for learning her story-and meeting her here.

        (Please forgive typo above…I know you are ‘Stewart’..I read your marvelous writing each and every post).

  55. Kristine says:

    I’m struck by how full of grace you are, even in pain.

  56. This is my first time here at your blog, and I have been completely and utterly stopped in my tracks.
    You have a beauty of spirit which is truly humbling and your writing has brought tears to my eyes.
    I can’t imagine how your every moment must feel for you, and I wish that the ache I have inside after reading your words was enough to make the universe take away your pain – but your appreciation of those you have around you is simply beautiful.
    I am so very, very sorry that you are in such tremendous pain and that you have endure such ill health, but I have a real feeling that you will triumph over it all and that your pain problem will be solved soon.
    Much love to you and your family and I thankyou with all my being for sharing your journey with the world and for being an illuminator of life for so many.
    Kristy xxxxx

  57. marioPS says:

    I don’t know you, but am sending some of my ‘spare’ love to help ease your pain. I may want to borrow it back later. So just take care of it by taking care of yourself. And watch a good movie. Or play a fun song. Or yell at someone saying stupid things on talkback radio. Or whatever it is that you can do to make you feel better. Without hurting someone else. Unless they deserve it. Or asking for it.

  58. Kristen M. says:

    I’m so sorry for you pain and suffering. Kick it in it’s ass! Best wishes to you and those that love you!

  59. We are so many……….praying, caring and sending love and whisper soft thoughts for your healing and life free of pain.

  60. I wish you peace and relief from pain (can’t they up the drugs?!) and many, many more times to hear those precious three words. You are so well loved.

  61. I cried so hard reading this. I am so sorry you are hurting. There really aren’t enough words to make it all better. And I do wish I could make you better. Gentle hugs and much love.

    P

  62. loran says:

    Gentle hugs to you Susan. Your words are powerful weapons in this cancer fight and I pray for your comfort – physical and emotional. ‘I Love You’ does have the most incredible power – keep pulling that strength deep inside your heart. xo

  63. Ellie Rancont says:

    Many gentle hugs, many prayers and much love from a stranger in Pennsylvania.

  64. I’m so sorry for your pain. May the love being sent to you, and the many, many thoughts and prayers, bring some comfort.

  65. Beth says:

    I’m new to your blog, but I wanted to say that I’m thinking of you, wishing your pain away and strength to your body and mind.

    You are an amazingly strong woman.

  66. Dorothy Doyle says:

    Wow. Only a very special soul like you, Susan, could write about pain in such a beautiful and poignant way. Tomorrow I am going to meditate and while I do so, I am going to send healing energy to you and pray for your comfort and peace. I join you and your family in praying for God to heal you.

    Heavenly Father, bring the miracle of your healing love to Susan. She is working with wonderful doctors, but you are the Great Physician. Our faith is in you, oh Lord, to bless Susan and her family abundantly. Amen.

  67. Elesha says:

    Im so sad you are so much pain. I live with chronic pain in my back and that is bad enough. I’m happy that you have so many people who love you. How wonderful to feel so loved.
    I pray everyday for a miracle for you.

  68. I hate that you are in pain. But I am glad that there are still solutions available to you. And I LOVE that your psychiatrist gives you chocolate!
    Much, much love to you and your sweetie. I am holding you both in my heart.

  69. Kate says:

    Your entry was so moving. Despite the fact you are suffering and in pain, you still manage to find and focus on the good things. What a gift that is. I hope your pain lessens and you an get some of the normal back. Thank you for sharing.

  70. corymbia says:

    Kelley sent me here. Even if only to send the unimaginative comment: “hugs”

    …. but I know how much just seeing a comment from a stranger saying “hugs” (aka “I’m here, I’m listening, I care.”) can help when you are in pain.
    So ……
    Hugs.
    XA

  71. Merry says:

    Once, when I was in terrible mental pain, my marriage fell apart and there was something so awful about the loneliness.

    And then something even worse happened and our son died – but we’d made it back to ‘I love you’ by then and oh! the difference to go through anguish but together and with love. It did make all the difference.

    I read every post of your and I think of you often. You are amazing.

  72. Tammie says:

    Sending peace and strength to you Susan.

  73. Maureen says:

    A beautiful post, as always, Susan. I hope you find some relief soon. You’re in my thoughts & prayers.

  74. JenC says:

    As always such a beautiful post Susan. I hope you get some relief soon, I wish it wasn’t happening to you and hate that you’re so uncomfortable. Peace and strength as always, and many warm thoughts being sent your way.

  75. Carol says:

    Prayers to you and yours always. You are a lesson to us all in the grace that you share with others and live your life with. I wish you comfort, peace and strength.

  76. Tanya says:

    Prayers for pain relief and earthly healing for you Susan. Wishing you a good day with your boys and your sweetie.

  77. Colleen says:

    I’m so, so sorry that you are in so much pain. I pray for you throughout the day and think of you always. I am so glad that there are some more things that might be tried, some increase in medication that might help. And I’m so glad that you have found a psychiatrist that has the good sense to offer you chocolate with sea salt and acknowledgement that this pain is awful and that it’s good and just to be sad because of it. I am offering my own pain up for you since we are all in this communion of saints together. I hope that it helps, even a little bit.

  78. Minky says:

    God I wish I could take some of your pain away. I’d gladly bear some of the weight of it, as I know many others would. I wish I could just magically give you a break, even for a day or so. Your posts always bring tears to my eyes and my heart. I adore you so. I pray every night for your healing.

  79. i know i have only met you once, for a few minutes, at blogher ny, standing for a few minutes, we spoke, i admired your sleeves, we hugged, i listened as you read at the voices of the year, i cried. i cry today to hear of your pain. and i want you to know that i think of you, your littles, your family. and i love you, despite the oddness of that statement, i do love you and all that you do and write and share and bear.

  80. Dear Susan, count me among those who love you (and your family), count me among those who admire you (and your family). You, for your writing which communicates your loving, beautiful, strong, kind spirit and is so helpful to others. Your family because they are the wind beneath your wings — I hear it in your words.

    Count me among those who would share your pain, who pray for you daily, and who question God’s plan — though my faith in Him doesn’t falter, I wonder why. And then I read a post like this and see how God is using you…but still…

  81. YP says:

    Susan, I’m so glad you have such a great support group. You deserve every bit of comfort you get. Thanks for your sharing your joy and pain.

  82. You are the picture of Grace, Susan. Wish we could really take some of that pain away.

  83. Lynn says:

    Now that?……that is peace. Sweeter words were never spoken. Even the Lord told us, “…the greatest of these is love”.

  84. Megan says:

    There are some updates on http://ibcwatch.evidencewatch.com/ – maybe there is something that would hit the spot? Some of it is quite technical, but the integrative approach is also covered. I can feel how draining the pain is in your post; I hope there is something there that can subdue the IBC for you. My own experience of adopting certain supplements has been remarkably positive.

  85. Laura says:

    For months, every time I start to type a response, I haven’t known what to say, and even though the same is true today, I feel like you have to be told how much i admire your courage and strength and how I wait eagerly for a new post in the hopes that today is a good day for you. Here is to more hugs, more strength, more cuddle time with your husband and boys and lots of chocolate.
    much love,
    laura in Kentucky

  86. as so many have said, you’re a portrait of grace and much, much stronger than I can ever hope to be. we’re all thinking of you. best to you and yours.

  87. allison says:

    You are one of the most amazing people I have ever sort of known. You have overcome so much to give so much. I am in awe.

  88. I just hope you can feel all of the love and prayers being sent your way from so many…and that they can help in some small way.

  89. Laurie says:

    I have nothing helpful to add to everyone else’s good words, especially yours, but I’m glad for you that you can manage to write through it. I think that is so important.

  90. Lisa Stone says:

    Susan, your strength is awe-inspiring. Sending you love, praying for relief, so grateful your family and friends are such rocks, rooting for you, rooting for you, rooting for you.

  91. Molly says:

    I don’t know what to say, but I want you to know I’m here. I’m reading. I think about you guys all the time. I love you.

  92. Julie says:

    You are so very brave.

  93. Here is a drop in the sea of love and prayers for you. You give us a face when we are bombarded with BREAST CANCER AWARENESS every time we turn around. At least you do for me. Every time I see a pink ribbon or bit of shameless merchandise, I say a prayer for you, your wonderful kids and husband, amazing parents and in-laws and every single person in your support group whose names I don’t know and faces I’ve never seen. I pray for your doctors who try their hardest to give you honest answers and encouragement, that they are able to do the same for all their patients and at the end of the day they sleep well knowing they are doing their jobs to the best of their ability. I know nothing about you except what you’ve written here in the last couple of months. I don’t know your favorite color, food, song or what you really mean when say one thing but are trying to say something else the way a real-life friend does. I can’t come bring you dishes or help entertain your kids because of this and the physical distance between us. But know that I do pray for you and think of you so often because for me you are the face of strength, love and bravery in the heat of battle, even one so personal as breast cancer. I don’t know you but I love you.

  94. Jennifer P says:

    You are loved indeed.

  95. NOR says:

    Oh, this brought tears to my eyes… because of beauty, not because of pity.

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