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…