"Don't hog your journey": Part I

Though I am, by nature, an extremely private person, I feel compelled to share this journey with you all ... in the hopes that my story will help someone else.  I recently read an article about Hoda Kotb and her own fight with breast cancer several years ago.  Something that was said to her resonated with me and I’ve been thinking about it ever since: “Breast cancer is part of you; it’s like ... getting married and going to college. Don’t hog your journey; it’s not just for you; think of how many people you could ... help.” 

Some things, though intensely personal and difficult, really do need to be shared.  Especially if the silver lining is that my ordeal can light the way for someone else.  If my story can nudge someone to be vigilant about their own health or give someone a moment of feeling less alone, then it’s worth delving into.  As women, we are our own best line of defense against breast cancer.  Even if being vigilant is frightening.  None of us is alone in this pursuit.  No matter the findings or the outcome.  Even if the outcome is cancer.

I was diagnosed with Ductal Carcinoma in Situ (DCIS) in November, after discovering a lump in the shower one late September morning.  At first blush, no one was overly concerned.  I was young (only 35), healthy, vibrant, and fastidious about breast self-exams.  My doctor felt it was most likely a cyst and sent me on my way for a mammogram.  (Incidentally, I was not due to have one of those until my 40th birthday.)

Fear and worry quickly settled in.  Though everyone was sure I’d be fine, I had a deep sense of foreboding.  Which turned out to be right on the money.  The mammogram looked suspicious and the ultrasound that followed looked worse.  Even though the lump itself felt routine and not at all worrisome.  No one could say for sure if it was in fact cancer.  No one could tell me anything and more appointments were made.  I remember sitting in the car and crying my eyes out.  I had nothing definitive to go on, but I knew.  And I was scared.

About two weeks later, I had a surgical consult for the biopsy that had been scheduled for me.  I went alone as I thought we would just be reviewing the steps of the procedure.  Big mistake.  The first thing the surgeon told me was: “We can’t prove anything yet, but I don’t like what I see in these images.  You need to get mentally prepared for a cancer diagnosis.”

It was in that moment that the bottom fell completely out of my world.  I sat there in shock, thinking about Todd and the kids, my life, and my future.   Did I have a future?  Would I be around to raise my children?  My thoughts and heart were racing as we talked about what was likely going to happen.  I remember the surgeon telling me that this was a detour and not a death sentence.  I remember him mentioning that the next year of my life was going to be hell, but that I would likely thrive in the aftermath.  I remember him telling me, above all else, to continue living my life.

And I remember hearing myself say: “We have work to do so let’s get started.”  As he offered me a box of tissues, I declined and told him I was not about to cry in front of him.  And I didn’t.  The tears came later and often.  More so than in any other time in my life.

Two biopsies followed (the first was inconclusive ... which only happens about 6% of the time), along with torturous waiting, worrying, and weeping.  Telling Todd broke my heart.  Looking at the kids reduced me to tears ... but life went on.  It had to.  And anger quickly became my emotion and weapon of choice.  That and an all-encompassing sense of stubborn determination.  Tensions were high while we waited for news, hoping that -- somehow -- we’d get a miracle.  And I began to try and lead by example ... staying busy, taking care of business, and setting a tone of purposefulness and composure.  I knew if I fell apart, everyone else near and dear to me would too.

The call we’d been waiting for came on November 12th.  The news was not miraculous, but somewhat hopeful ... according to the surgeon.  DCIS, he informed us, was the “best” kind of cancer to have.  It was not only treatable, but beatable.  I would be cured if I could just hold on for the roller coaster ride that awaited me.  We discussed surgical options and he left me to think about what I’d like to choose:  a double mastectomy or a lumpectomy.  I called him back the next day and said that I was electing to have a double mastectomy with reconstruction.  Though both options were equally sound, this option -- for me -- provided the most peace of mind.  Especially knowing that I couldn’t possibly repeat this arduous process again.  It was simply too much.

The “good news/bad news” trend continued as I underwent an MRI to determine whether or not there were any other suspicious lumps to contend with.  (Incidentally, we had to wait for this procedure until a firm diagnosis was established.  Since my breast cancer risk on paper was virtually nonexistent, insurance would not cover the procedure otherwise.  Oh, the irony.)  Though my lymph nodes looked clean, one area in my other breast was flagged and I went in for yet another ultrasound.  This time, it was only a cyst and I remember thinking “If only my first appointment had gone so well.”  



That was the plan anyway.  But as plans so often do, this one went astray and the ball game changed yet again ... while the roller coaster ride continued.

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I’ll share Part II with you all soon.  If you’ve stayed with me this far, thanks for reading.  If you know someone who might be helped by my story, please feel free to direct them here.  Anytime.

As always, your interest, prayers, and support remain invaluable.  As you'll later see, you are all a part of this story too.