Welcome to My World!

IIt Started With Me is a phrase that came to me on August 25, 2010 when a Fort Wayne, Indiana radiologist at the Breast Diagnostic Center told me over the phone that my guided needle biopsy results indicated I had breast cancer.  He told me that the Breast Diagnostic Center had contacted my gynecologist’s office and relayed the results to them.  The radiologist then told me that my gynecologist’s office had asked that he, not them, tell me of the cancer diagnosis and asked that he also tell me that I’d need to find a surgeon.

Ya…Let that soak in for a moment.

“Hmmm…” I acknowledged his statement.  “So should I look under Physicians/Surgeons or Physcians/Surgeons/Breast Cancer in the yellow pages?” “Should I call my gynecologist’s office and ask them for a referral?”  “Do they see me?”  My questions just spilled out of my mouth.  How could I be so stupid not to know how this works? I chided myself.  What had I done wrong, I wondered?  How did I cause this? I asked myself.  These questions flooded my mind like background noise interfering with my concentration as the radiologist explained what they’d found, the size of the tumor, where it was located, and the likely prognosis.

My brain felt like it was split into two pieces, each working independently of the other.

I remember it was a beautiful day outside.  The call came at 3:30PM.  My husband got on the other phone and listened next to me, outside, on our deck, under the warmth of the sun.  I tried to speak but my voice was cracking and squeaking.  I didn’t want to cry on the phone.  I am a businesswoman.  I wanted to remain collected, professional, dignified.  The call was short.  I felt sympathy for the poor guy on the other end of the phone.  I remember thinking:  What a shitty thing to make a diagnostician do over the phone to a woman he’d never met, nor most likely would ever meet.  I wanted to make the news he was delivering easier for him. I thought, this has got to be harder for you than me.  Don’t ask too many questions now…be polite.  I remember saying, “Thank You” at the end of our call.  He said, “I’m sorry.”

My life and everything in it changed that day.  My husband, Don, held me in his arms and I cried.  Every deep breath I took was infused with his sweet, caramel, musky scent.   He was warm, strong, loving.  I closed my eyes and pretended we were back on the beach in Jamaica, our honeymoon spot years earlier.  “Sandals entherium…love is all you need,” my 2-year-old son’s version of the popular Sandals Resort commercial rang through my head. I literally heard my son’s voice from 16 years earlier. I held on to Don tighter.  I pretended we were anywhere but on the edge of a cliff overlooking a raging, angry diagnosis.  I kept my eyes closed.  I was afraid to open them.  I held him and breathed him in.  I felt dizzy.  I didn’t really believe the phone call I’d just ended had really happened.  But when I opened my eyes and looked down I saw that Don and I were both holding a phone in our hands.

How to turn back the clock?  But to where?  30 minutes?  5 days?  2 years?  I didn’t know.  What I did know is that I wanted to find a surgeon, cut out what evil interloper had invaded my body like a thief in the night, kill what threatened to harm my husband and my children.  I became ice cold and my body shivered under the 87 degree sun.

In the hours that followed I recalled the appointment with a nurse practioner at my gynecologist’s office 5 days earlier.  She was small, curt, arrogant.  I was tall, heavier than I should be, scared.  My husband was in the office with me.

“What’s going on?” she asked.

“Um…sorta hoped you could tell us.” I joked.

“Ok. Why are you here?”  she asked, sounding a little bored.  She looked about 30.  Long, straight hair pulled back severely into a pony tail that hung long down her back.  She rested her chin in her hand, cocked back like a small ledge designed specifically to accommodate her posture.  She flipped through the papers in my medical chart, not really reading or glancing down as she did so.

I explained my concerns quickly and succinctly:  Thought I’d felt a lump in my left breast but it sort of burst when I pressed in on it.  Then I felt a terribe burning sensation and a great deal of pain.  Think I felt a similar one on the other side. So I felt safer.  That was in July.  Thought I’d wait until after my period to get a mammogram.  Got busy.  Checked again this month.  Sorta feel the same thing I think.  My breast is really sore.  No one in my family has ever had breast cancer.  And besides, I didn’t think cancer hurt.  I was rambling.  I don’t know if I took a breath between statements.

“Hmmm,” she said.  “You haven’t had a mammogram for 5 years.”

“No.  That’s not right.  I had one two years ago.  And I had a full physical exam with a breast exam last July. Including blood work at my family doctor.  It’s only been a year…” I protested.  “Besides,” I continued, “since I don’t have a family history I thought the new recommendation was every two years.”  I  continued to document my breast health care experience using the names of the providers I’d seen and the results I was told that followed my last visit to their office two years earlier.  “Don’t you have that information in your chart there?” I asked.

“That’s not important.  Sometimes reports and information don’t always get put into the chart.  Let’s take a look.

Shocked at her dismissing the failure to find my records from a significant visit in 2008, I complied with her directive to have her “take a look”.  I explained what I had most recently felt in my breast.  What I feel each time I examine my breasts.  I have fibrocystic breasts, so they’re lumpy, filled with various ridges and nodules.  I felt nervous while she pressed and squeezed my breasts.  Was I kidding myself, I wondered?  Had that bump, that lump always been there?  Did I feel that one?  Did I want her to feel something or not?  I felt afraid to breathe.

To cope with the increasing pain of her exam and my growing anxiety I told her that I wanted to have an exam prior to getting my mammogram this year because cancer kills most everyone in my family, mostly lung cancers, all found in smokers and  I wasn’t a smoker.  And, I was quick to point out, no one in my family had ever had breast cancer.  So I could just be scared for no reason. “But,” I said, “it’s been 2 years since my last mammogram, I’m 49-years old, and,” now I reached out to lightly touch the hand she used to examine my breast, my attempt to connect with some humanness in her and to calm myself before I spoke the next words I felt too afraid to say, “shit happens.” I smiled at her and laughed nervously.

“Well. It’s gotta start somewhere,” she said flatly, almost irritated that I could be stupid enough to think that because my family died of lung cancer I was safe from other types.

I was speechless.  I felt a knot pull in my stomach and a hard lump in my throat.  “Oh, no.  Not gonna cry in front of this little snot-nosed bitch,” I thought.

“Feel this?” she asked.  “I can go right to it.  See? Here’s another one on this side.” she said as she took my hand and pressed my finger into the center of my chest and guided it into my breast.  “See?”

“Those have been there forever.” I said.  “That’s not what I felt.” I continued.

“Well…” she trailed off as she turned her back to me and walked back over to the counter where my chart sat open.  “I”m going to have a diagnostic mammogram of your left breast ordered.”

“I’d like it of both breasts…” I started to say, but she interrupted my sentence.”Well sometimes insurance won’t pay for both so I’m…” I interrupted her this time, “I’m okay with that.  We’ll pay for whatever needs to be done.  I came here first so that I could have a diagnostic mammogram and not just a standard mammogram.”  I waved my right hand across my chest between my breasts, “I want them both checked out.”

“Well.  We’ll get it set up for you…”  She put her head down and wrote something.

Just like that, the appointment was over.  Don, helped me down from the table and helped me get dressed.  He was angry with the examiner’s attitude.  So was I.  “What just happened?” I asked him.

“Oh.  Her?  I’m pretty sure her attitude was for my benefit.” he said.  “Don’t let her bother you.  She’s just a small person with a little power and a big ego.  She wanted you to think she was important.  I think you intimidated her.” He hugged me and kissed me before we turned to leave the office.  I was shaken, unnerved.  How does someone with breasts like mine really ever know what’s normal and what’s not?  And why had I put up with the little girl’s behavior toward me, I wondered?

The days that followed all lead to the 25th of August, the day I learned I had breast cancer.  A type and stage so early that no one had been able to feel it.  No one has been able to feel it.  It would have gone undetected by mammogram for another 4 or 5 years most likely.  I hadn’t done anything wrong.  I haven’t done anything wrong.  Except maybe allowing a young, snotty little girl to talk rudely and hurtfully to me when I was most vulnerable and scared.

Funny. A small, arrogant person’s hurtful and dismissive, “It’s gotta start somewhere” comment tossed at me while my aching breast was being smashed against my chest wall beneath her hands has turned into a rallying cry for me, my family and any other woman who’s the first in her family to be diagnosed with breast cancer.

It did have to start somewhere.

It started with me.

And I’m gonna finish it off!

Just watch me!