Coming Unglued

I want to give you just the right words.  Ones that will fill your cup, that will stick to your insides as you swallow gulps of hope and inspiration.  I want to be a light in your life, not just another sad story.  I want to be strong, but somehow that word —strong –has become tangled up with pretending and that is the one thing I refuse to do.

I cannot fake okay.  If I do, then the next person battling breast cancer or Lyme disease will feel like she, too, must pretend in order to be strong.  I can’t do that to her.  So while I ache to make you giggle or maybe even shed a tear of gratitude, it’s just not in me right now.

The pain and recovery of a double mastectomy with a complete lymph node removal on one side has been so much harder than I’d imagined.  The surgery lasted a little over six hours with three surgeons attending.  I still feel guilt for never fully comprehending that this is a major surgery.  I think of all the women I’ve known who’ve had mastectomies and how I sent a get-well card or a casserole and honestly felt I’d done my part.  To those women, I am so sorry.  I should have washed your dishes, taxied your children, sat in the silence of your screaming pain.  I didn’t know.

It’s not just the amputation of body parts; it’s the attempt at amputating your identity.  The parts that made you feel sexy in the right dress, then later those same parts that nursed your babies.  It’s bizarre looking down to mounds with angry scars from side to side.  These parts, skin kept intact by expanders, are not me.  Without nipples, do they even count as breasts?  I don’t know.

Perhaps the strangest aspect is that the parts of me that are mutilated are considered taboo.  If I’d had surgery on my leg, people would feel perfectly comfortable asking, “How’s your leg healing?”  As is, few are going to be so bold as to ask, “Hey, how are your breasts…or lack thereof?”  It’s weird.  I’m guessing this is why I wasn’t fully aware of how difficult recovery would be.  The word mastectomy is tossed around a lot, but few of us delve any deeper.

Since January, I’ve survived a double mastectomy, infection, the flu, pneumonia, 12 weeks of chemotherapy, a hysterectomy, and am now beginning my second week of radiation.  I am barely recognizable, with prickly hairs beginning to sprout on my head.  Surprisingly, the loss of my hair has been easier than I’d expected, maybe because in light of everything else, it really is just hair.  The constant pain from the chronic Lyme disease is much more challenging.

A few weeks ago, I was feeling great, all things considered.  I was starting to leave my house more often and twice I actually said aloud, “I feel better than I have in four years.” It was exhilarating and terrifying.  Hope is a beautiful, scary thing.  For the first time in years I began to believe that maybe, just maybe I could be cured, the daily joint pain could end, and I could return to a normal life.  For four days, hope swelled in my chest.

Then my cancer marker doubled.  The hysterectomy was moved up to make sure we weren’t dealing with a secondary type of cancer.  I was glued together in my belly button and three separate locations on my abdomen. My hemoglobin levels crashed, the joint pain returned, and I was so pail even my gums were white.

I’m now well enough to do radiation, but those treatments…and the two hours in a vehicle to get to and from them…consumes all of my energy.  I’m not sure if the lack of energy is a physical response to radiation and battered bloodwork from another surgery, or if I’m just a product of the negative side effects of hope.  I remind myself that healing is not always linear, that just because I’m not better this time doesn’t mean I won’t be later, that God does still have a plan for my life.  He is making a way; it’s just not the way I’d hoped it would be.

But it’s hard.

I want so badly to be well, for there to be a happy ending to this exhausting story.

I want to be able to tell others how God healed me, to give Him glory through my story.

I want to run and take long hikes with my daughters.

I want the sadness to ebb, the powerlessness to dissipate, the constant fear and anxiety to let go of me.

I want…

I want…

I want…

But I also want to be authentic for those who fight this same battle, and the truth is it’s not easy, it’s not linear, and it’s not always pretty.  It’s painful, heartbreaking, and exhausting.  We are in need of prayer always, but especially when the hope meter is low.

Today, friends, it is low.  The journey is long, and I’m tired…

and I want…

 

 

12 thoughts on “Coming Unglued

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  1. I am praying for you and so are my prayer warrior friends. We love you though we’ve only met you via this media!

    Our little group of praying women have been named the Water Walking Women. (Obviously you are one of this group)–the name indicates through Christ Jesus we are able to keep walking, though sometimes the waves do overtake us for a time. He picks us up. Am praying that you will feel His loving arms pick you up and hold you above the waves so you can continue walking with Him and with us very soon (today would be good!).

    Love and blessings to you and yours,
    Letitia

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  2. I am on a similar journey. DMX on Jan 29, and chemo every 3 weeks since then. I have been in bed the last 4 days and have been so low and weak. I am learning to be vulnerable- because I really have no other choice. Thank you for speaking your truth. 🙏

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  3. I don’t know you, haven’t followed your journey until recently because Anna shared your post. My words are insufficient but I hear you and I am praying for you. I stand I awe of what you have gone through, you would think a body just can’t take that much and yet here you are. I’m reminded of a passage in Exodus 17, I pray you feel God bear and that you feel the strength of the stone that is beneath you and that you are surrounded by people who are holding your weary arms up. Peace and strength be with you.

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  4. Oh sister, keep wanting and wanting and wanting…It’s ok. That wanting may just be the fuel you need at times to put your armor back on and ready yourself for another day in the trenches. You are so beautifully human. And your battle right now…it sucks. It just does. And it’s most certainly not linear, pretty, or easy. So please keep coming back to all of us in the world with all of your pain and fear and worry and let us try to absorb some of it up for you. I’m holding all the parts of you in my heart.

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  5. I love your writing and find your messages so genuine and authentic. I pray that your journey takes you on an easier path soon. Thanks for sharing your story.

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    1. I hope so much that you feel as well as possible as soon as possible, Jena. I too endured a double mastectomy with complete lymph node removal and I felt that others who haven’t experienced this simply have no idea at all of the trauma, physical and emotional, of this particular surgery. I underwent chemo and radiation after surgery. It a tough year, but you’re almost there. Looking back, I can hardly believe what I went though and what so many go through. And now I’m saddled with a permanent health problem as a result of losing my lymph nodes (lymphedema) that is both disfiguring and devastating to my self esteem and nearly cost me my life due to sepsis. So I understand the wanting. I want this to have never happened to me or you and so many other women. I want my breasts back, I want my body restored, I want back everything the hideous cancer took from me. We all do. Anyway, I’m glad you have your faith and a loving husband to help you heal.

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  6. Jena, I wish I could write as eloquently and beautifully as you. But I can only speak from the heart. Sharing your journey will surely touch others. My prayers are with you and for you. May He ease your suffering. And shorten the length of your recovery. Love you dearly. Aunt Doris

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  7. Jenna, you are so in my prayers. We have also suffered the Lyme journey. I can’t imagine adding what you’re going through. We’ve had 9 years of trying to hope. I hear others say how someone handled a major illness with grace and it makes me mad and jealous. Lyme takes your grace, chews it up, and spits out another mountain to climb. Thinking of what my daughter and our family has gone through for 9 years makes me what to scream. The good days are fearful for what tomorrow might bring.
    I pray, pray, pray for your recovery. For more good days than bad. And the knowledge that your honesty and strength is a light to others. ❤️

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  8. I pray to God above to lay his healing hand on and give you the healing you so well deserve. I also pray that God gives strength and love to your family members who are strong to fight this with you. May God bless you and your family.

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  9. Thank you for being authentic. Your words are so beautiful. YOU are so beautiful. Your words reach me. “I want to be strong, but somehow that word —strong –has become tangled up with pretending and that is the one thing I refuse to do.” “It’s not just the amputation of body parts; it’s the attempt at amputating your identity. The parts that made you feel sexy in the right dress, then later those same parts that nursed your babies.” How desperately I wanted to be sexy after my mastectomy. “I want to be able to tell others how God healed me, to give Him glory through my story.” “I want….” Praying for healing, for God’s strength and peace to flow through you…and giving thanks for you…

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