What the Doctors Didn’t Tell Me

My fingers fumble over the keys now, straining to find their way again. They’ve lost that effortless feeling of gliding over the keyboard as they did before.

Just like my body lost its strength and my mind its memory of the summer months.

The doctors didn’t tell me that.

They didn’t tell me how much I would lose, or how much it would hurt to lost it all.

They told me it would be okay.

Somehow I believed them. I thought it would be okay too, and what else could I have done with such messy, angry, prolific cells multiplying inside me? I would do it again.

Perhaps the knowledge of the potential those wicked cells within me possessed created a desire in that deep, knowing part inside myself to trust those who knew the power of the beastly cells the best, the kinetic energy that pulsed and breathed and thrived inside their good turned bad minuscule bodies, the capacity they held to ravage tissues – and even my life. Perhaps, too, knowing the horrific potential those cells carried created in me a desire to be taken care of, a desire for the doctors to make it all okay again.

Certainly I must say even this is somehow better than that.

They tell me they have taken away the cancer.

Yet it’s not okay. It’s not okay now. Nothing about cancer is okay.

Nothing about having my breasts removed is okay. The scar stretches across my chest like a rope pulled tight from armpit to armpit, threaded right through those tender spheres that once nursed my babies and loved the gentle touches of my husband. And I feel them still. I feel them pulled taught by the disfigurement like a child’s gentle jaws clenching hard. I feel them yearning for the flesh and nerves and vessels that once fulfilled them, calling out for what once was and what never will be again. They burn like a fire that spreads across three quarters of my rib cage, from the base all the way up to my clavicles and reaching far like flames that scorch my armpits and my sides. They burn like two suns whose light has gone out yet still burn on in quiet darkness, a darkness no one can see or feel. They are burning embers that refuse to be calmed or quieted.

The doctors didn’t tell me it could be like this. They didn’t tell me I might develop a neuropathy that would stagger me. They didn’t tell me that I would bolt awake from a restless sleep each morning with the painful feeling of my nerves screaming out for relief from all that was severed from them. They didn’t tell me that every day, all day long I would feel the burning pulling of the scar, that the pain of nerves reaching out for what is no longer would stall me so. They didn’t tell me that the pain would bring tears to my eyes, two and a half months later. They didn’t tell me how my bruised, wounded bosom that is no more would hurt when my children nestled into the once soft flesh to hug me, or how they would flinch and pull away from the bare bones, scraped clean of the cancer but left bereft, that hugged them back.

The doctors didn’t tell me how the tears would flow in rivers of pain down my cheeks when I lay with my husband.

And they didn’t tell me that he would lose too. They didn’t tell me that my husband’s faithful eyes would never again rest on the tender rounds he once found so lovely, that his gentle hands would never again cup their fullness in his grasp. They didn’t tell me that his strong chest would rest against a hard, bony plate that burned with nerves firing frantically out of control on the inside, yet that could feel nothing but a strange tingling numbness when he touched it.

I didn’t know how I would feel the void, how the pain would feel like more than I can bear or how the grief would consume me.

I didn’t know how alone I would feel in a crowd, or how every time someone asks me how I am, I am compelled to lie because it’s all okay, right?

It’s supposed to be all okay.

They told me it would be okay.

I’m supposed to be okay.

Blessings,

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29 comments

  1. Marsha says:

    Hello! Your article and bio have touched a good nerve for me. I am one week post op for my bilateral mastectomy after 20 weeks of chemo. More than what I’ve lost, as a homeschooling mom of a 7 and 5 year old, I hate what this process has taken from them and from us as a family. I’m praying through this hard time and leaning heavily on my awesome support system. Thank you for putting this into words. ❤️

    • Diane says:

      Thank you, Marsha, for taking the time to comment on my blog. I’m a homeschooling mom, and I hate it too. I get it. It’s hard.

      I pray for your healing and healing for your family.

      God bless your dear family.

      Diane

  2. Shaun LaBay says:

    Diane,

    As a husband to a survivor we feel like we are there, and we feel like we understand since we have been there, but in truth we don’t… we can never ever understand. We can not make anything better, and our comfort seems to hurt more then help. Reading this brought a lump to my throat, tears to my eye because you said exactly everything my wife has been saying since all of this started. Her double mastectomy was in June and I still struggle to find ways to comfort her… there are no words, there are no gestures. While she is is good spirits and tries hard everyday to move forward it is not the same for her, nor will it ever be. I am not sure if there is a new normal or how we move forward,but I want to wish you the best and thank you for putting your words, thoughts, and emotions out there god bless you and your journey.

    • Diane says:

      Thank you, Shaun. Your comment made me cry. You’re love and faithfulness to your wife is so evident in your comment. It is such a deep painful loss, and I pray for healing for your wife.
      Thank you again for your comment. Hearing other’s pain helps me to be more patient with myself.
      May God bless you and your dear wife.
      Diane

    • Diane says:

      Thank you for your prayers, Judy. I know God has a plan. Thank you for reading my blog. I pray for you and your husband as you share God’s word with a world who so desperately need to hear it.
      Blessings,
      Diane

  3. Penny says:

    Praying for you always, sweet friend. Grateful for your amazing writing, but knocked sideways by its content. So, so sorry for all that you have lost. 🙁

  4. Barbara Schutt says:

    Many Blessings to you, dear Diane and thank you for sharing this very emotional journey. I have had a double mastectomy on 7/26/17 after 20wks of chemo and await a reconstruction exchange next week. I completely do feel for you and your pain. This pain is emotional and physical that we have endured. I’m in a better place and truly wish the same for you. I wish you health and lots of love!

    • Diane says:

      Thank you, Barbara, for sharing your story too. It is a painful walk we walk. I’m so thankful you’re feeling some better. That gives me hope too.
      Blessings,
      Diane

  5. Felicia Barber says:

    Diane,

    As I read the journey of your heartache, my heart is so saddened. There are absolutely no words that can comfort, no words that can take your pain away, no words that can express my deepest prayers that are lifted up for you and your family. Your journey has really gripped my heart and I just want you to know that you are loved and prayed for by your forever family of Jesus…your Brothers and Sisters in Christ. May you feel the comfort and strength from our Heavenly Father who loves you more than you could ever fathom. Hold on to His comfort and may He wrap His loving arms around you my Sister in Christ. Love you.

  6. Jane shepherd says:

    My dear friend. Thank you for your heart wrenching honesty about your journey through this deplorable disease. I cannot grasp even a tiny bit of what you are going through. Just know that I am here and available if you need anything or even someone to talk to. I love you and your beautiful family. I can listen. I am praying daily and calling out to God for your relief from all of this. He holds you in his healing arms dear child of God. I am blessed to call you friend.

    • Diane says:

      Oh Jane,
      Thank you. You are a blessing to me, and I loved our visit. Thank you for reading my humble ramblings. God bless you and your family.
      ❤️
      Diane

  7. Wanda says:

    Diane,
    I can not know. But I can know *more* by listening to your pain. Thank you for being vulnerable and raw. You are loved an admired!

    -Wanda

    • Diane says:

      Oh Wanda, you’re so kind. Thank you so much for caring and for reading. You’ve blessed me.
      Thank you for taking the time to leave a comment.
      God bless you! 💞
      Diane

  8. Deb Bond says:

    Diane,
    I hate to read of your pain, both physically and mentally. I can’t imagine what you’re going through but I’m sure that your heartfelt words have given comfort to others in this battle that they are not alone in their fight. Keeping you in my prayers.
    Deb

  9. Farrah Rollings says:

    Diane, our mutual friend Vince shared your blog with me! I too have had breast cancer. I was diagnosed the week after my birthday in June 2016. I’ve been through chemo, then a bilateral mastectomy, reconstruction, and finally radiation after another lymph node was found to have cancer. Hopefully, I’m done with treatments other than the Tamoxifen pill I’ll be taking for many years.

    I just wanted to reach out to encourage you. I know things will never be the same as they were before, I have found a new normal. I have found such strength in my faith. It sounds like you have a good support system from the other comments. It sounds like you are well loved. I am so sorry for all that you are going through, and I will be praying for you. Please let me know if there is anything I can do for you!

    You have a precious family!

  10. Rebecca Southard says:

    Diane,
    Many prayers for you! Thank you for sharing! I was diagnosed Jan 7, 2016. Had a bilateral mastectomy Feb 17, 2016 then started chemo 3 weeks later. 20 weeks, then 33 radiation treatments, total hysterectomy Nov 2016 (I’m BRCA 1+). I just had my expanders placed Sept 11, 2017 and that was by far the hardest surgery!! I’m hoping to not have them long and have the exchange surgery!! I’ve felt those pains the first time for a long time and now the 2nd time!! My daughter was getting ready to turn 10 then! About the same age I was when my mom went through it! You get use to a new normal but it’s never been physically or emotionally the same for me! Everyone is different! Hang in there and try your best to stay positive! That helped me the most!

    • Diane says:

      Thank you, Rebecca, for sharing your story here with me and for taking the time to comment. What a long and difficult road you’ve walked!
      I don’t see how it can ever be the same.
      Xo
      Diane

  11. Lisa says:

    God bless you, I, and all who have to bare this horrible disease… I remember standing in the shower and looking at the scars that used to be my breasts. I would just sob uncontrollably, I hated showering for awhile. I’m now 4 years out on Halloween that I had my double mastectomy. I’ve had reconstruction and I’m alive. I thank God everyday that I’m still here. I do miss my breasts and I can feel when the weather is changing in them, it’s a tightness. I also don’t wear a bra because pressure against them bothers me. It’s a horrible and F’ed up thing we’ve have had to go though. But I’m so happy to be alive and I try not to dwell on what I’ve lost and focus on what I still have. Thank you for writing this story, I can identify with it so much… You will be ok! You are so strong! You are a survivor! <3

    • Diane says:

      Dear Lisa, thank you for sharing your story here with me. I’m sorry for your loss as I am for mine. Thank you for your sweet words of encouragement. I feel hope in your words.
      God bless you!
      💞

  12. PAULA ONEAL says:

    Diane, We have never met but I came across your blog while on Stephanie Drabble’s FB page. Thank you for sharing your experience with others. It can’t be easy, and your openness is so very much noted and appreciated by this reader. I’m grateful NOT to be in the cancer club, but I welcome any understanding that can be imparted to those of us who haven’t walked in your shoes. I am holding you in the healing light and visualizing a complete recovery! In the meantime, know that you are strong, resilient and loved by many – some who you never met.

    • Diane says:

      Thank you, Paula, so much for taking the time to read about how all of this feels to me, and to many of us who walk this road, even though you’ve not walked it yourself. Thank you, too, for your heartfelt words of encouragement and well wishes for a full recovery.
      And, perhaps most of all, thank you for loving me even though we’ve never met.
      Blessings to you and yours.
      Diane

  13. Jeanine says:

    I have no words of wisdom, I am just so sorry. Your loss is truly great and I pray God will bring healing to your body and peace to your spirit. I pray he will restore what has been lost and allow you to walk in joy once again. Healing is a long and painful process, both physically and emotionally. He will carry you. I know you know that. Peace to you, Diane.

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