Meeting the Navigator

Getting a diagnosis of DCIS has been more of a head game than a physical one. Physically I feel no different than before the diagnosis, but emotionally I’m on a roller coaster.

Though it is only just begun, this journey has already changed my attitude about letting others in.

The outpouring of love and support that has come in since my first announcement has been overwhelming. Thank you.

I can definitely see the irony of it being the left breast. The receiving side of my body. The same side that locked up my lower back a couple months ago. I’m great at giving, maybe not so much receiving.

I love Louise Hay. Her book Heal Your Body is the first reference I pick up when dealing with a health issue. Emotions and mental state are key players in the body’s physical health. Heal Your Body gives mental causes for physical illness and new thought patterns for changing them.

This is what it says about breast problems and cancer.

Breast problems: A refusal to nourish the self. Putting everyone else first.

Cancer: Deep hurt. Longstanding resentment. Deep secret or grief eating away at the self.

These are the new thought pattern suggestions.

Breast problems: I am important. I count. I now care for and nourish myself with love and with joy.

Cancer: I lovingly forgive and release all of the past. I choose to fill my world with joy. I love and approve of myself.

Yep. I can see myself in that. I even work hard to deflect things from being about me. I was telling a friend about my diagnosis and I said “It’s just DCIS, no big deal”. She looked me straight in the eye and said “It is a big deal”. I bartered with her, “Okay it’s the littlest big deal you can get”.

DCIS stands for ductal carcinoma in situ and means that there are abnormal cells inside the milk duct. It is considered by many to be the earliest form of breast cancer. But there are some in the medical profession that think it shouldn’t even be classified as a cancer because it is not invasive.

Leave it to me to get the one that no one can agree on.

Most of us are used to hearing about the stage of a cancer. My DCIS is a stage 0. Precancer they call it.

When I got my diagnosis I did the one thing that you should never do when you are told you have cancer….I googled it. I saw treatment options that varied from take some supplements and you’ll be fine, to mastectomy with radiation and chemotherapy.

I booked an appointment with the navigator.

This was my husband’s first visit to the breast center with me. As we sat waiting for our appointment with the navigator I pointed out all the uniforms, folders, décor and other offending pink items I could see.

I wanted to think about anything other than the reason we were there.

When my name was called he stood up with me and caught my elbow as I swayed a little bit. My body felt heavy and my feet rooted to the floor. If I followed her through that door she was going to tell me about cancer. Not just any cancer….mine.

Paula had a soothing smile and a positive tone. She showed us into the library. I wasn’t prepared for an entire room filled with cancer literature. There were books, posters and anatomy charts everywhere I looked. I took comfort in seeing some holistic titles in the mix.

I pulled my own personal notebook a little closer to my chest as if to shield myself from the scary books.

We all sat down at the table and it was the first time I noticed the large yellow envelope and notebook that Paula had been carrying. The envelope contained copies of my mammograms and results of my biopsies. I would need these for the surgeon.

But the notebook was for me.

It is a 3” black binder with; you guessed it, pink writing and trim. Surely she had made a mistake. I couldn’t need a binder that big….it is only stage 0.

She opened it up to show me the contents. There was a card from the president of the Breast Health Center as a survivor herself. There was a small pamphlet about understanding your journey and then a much larger book called Be A Survivor. She cautioned me to only read the parts in that book that pertain to my diagnosis. Later I would understand why she said that.

Slowly the binder started to give me some comfort. I could appreciate how far the western model of medicine has come if they are empowering me with information. She showed me the tab with my imaging results, the pathology reports and the 10 other tabs. Not all the sections pertain to my situation but all the bases seemed to be covered.

I’ll admit I was feeling a little smug. I wouldn’t be needing all this stuff…I’m a stage 0.

After she got done with the generalities of the binder she started to talk to me about my specific diagnosis. She explained about DCIS and that it is precancer and stage 0.

Then she said something I wasn’t prepared for.

Your DCIS is stage 0 and grade 3. I knew about cancer staging but I was not familiar with grade. Grading ranges from 1-3. Mine was the highest grade.

A grade 3 means that the cells are growing and spreading aggressively.

Wait. What?

Growing. Aggressive. Not what I expected to hear. It felt like the wind had been knocked out of me.

I struggled to pay attention during the rest of the appointment. I watched my husband’s face as he asked questions and tried to hide his own fear.

Neither of us said anything as we rode the elevator down and walked out of the building. When we got in the car I began to cry, trying to wipe away the tears without him noticing. He couldn’t help but notice…he was looking at me so lovingly.

“We’ll get through this”, he said. “I know”, I replied. He hugged me and started the car.

We would see the surgeon in two days.

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