Apparently when the doctor told me that my surgery results were good my brain understood it as everything is back to normal. That however was not the case. My brain wanted to party but my body reminded me that I had experienced 3 surgeries in 22 days. The last surgery turned out to be the most painful because of the additional incision in my armpit to remove the lymph node.
So I settled for enjoying my happy brain and nurturing my injured body.
Once again I was back in my nest of a recliner. I was a pro at how to stack the pillows just right so the icepack could come in contact with me without being so heavy it hurt. Plenty of water where I could reach it and the time of every pain pill recorded on the refrigerator.
We had a system.
But this time is different. My whole shoulder hurts and it brings tears to my eyes to stretch my arm over my head.
I feel broken.
When I look at myself in the mirror I see that familiar pattern of steri-strips on my breast but now an additional row of strips covers the 2” long incision under my arm. Several deep breaths keep me from giving in to the panic that starts to rise when I see it.
I’ve come too far to let this get me down now. I rededicate myself to healing and stretch my arm over my head often. It hurts and I whine.
You would think after 3 surgeries that the hard decisions would be over but there was still another Monday to dread.
My appointment with the radiation doctor was the following Monday, which by now was definitely not my favorite day of the week.
When I first learned of my diagnosis, I bucked the medical system by meeting with my radiologist and oncologist before starting any treatment. That’s not how it is usually done. Normally a patient doesn’t meet with the radiologist for the first time until surgery is complete.
I was so grateful that I had taken the time to meet with her before I started treatment because after having been through so much I was not at my best when I saw her after the surgeries.
And I was not prepared for the energy encounter I was to have there.
My original diagnosis was DCIS stage 0, high grade and when I first met my radiation doctor I told her that I did not believe that radiation was a good choice for me. I felt that if everything was taken out with surgery I would not want to damage my body with radiation.
Now here I was 3 surgeries later with a micro-invasion that upgraded me to a stage 1 and even my surgeon was advocating for me to have radiation. It is, after all, the conventional treatment.
But I am by no means conventional.
With every surgery I had felt a solidness that went along with my decision. I was scared but grounded.
The very thought of radiation causes my breathing to become shallow and my stomach to hurt. There is no solidness there.
Still I struggled with the decision. I told myself that things were different now; the DCIS had been more widespread than they thought at the beginning and there was a micro-invasion. I did more research and looked at the statistics. I talked to other women that had gone through radiation.
Still my stomach hurt.
I meditated at the outdoor altar, walked the Labyrinth asking for guidance and tied a ribbon on the prayer tree. No matter how I looked at it radiation just didn’t seem like the right path.
By Sunday I felt strong in my decision NOT to have radiation.
I practiced my resolve as my husband drove me to the doctor’s office on Monday morning. I knew this was the right decision for me.
My radiation doctor’s office is literally right across the hall in the same building as the surgery center. As we went in I thought for a moment about stopping over to see my nurse friends.
When I first met this doctor we had talked about me having chickens and her love of fresh eggs. That morning I sat in the waiting room with a 6 pack of fresh eggs for her. I smiled as I thought about a time when country doctors would take eggs as payment for services. Those days are long gone.
My name was called and we followed the nurse back to an exam room. I was excited when the scale revealed that I had shed 10 pounds on this journey. Not the way I would recommend releasing weight but definitely a bonus.
After the nurse left we waited for the doctor to arrive. I chatted nervously to my husband about nothing. There is an unmistakable energy about cancer and it is palpable in this doctor’s office.
The doctor walks in wearing a long skirt and a smile. She thanks us for the eggs and shares a short story about her family having chickens when she was a kid. I like her as a person and feel confident in her skill.
She looks me straight in the eye and says, “Wow 3 surgeries. Are you ready to start radiation?”
My stomach immediately hurts and inside my head I am screaming “NOOOO” but I just quietly say “I don’t want to do radiation.”
Over the next few minutes she did her job exceptionally well. She told me risk factors and other scary statistics designed to convince me to follow the conventional wisdom. She used terms like survival rate and recurrence that had an immediate impact on my energy.
I got scared.
What if she was right? What do I know? I’ve never done this before.
Her recommendation was for whole breast radiation, once a day for 4 weeks.
I asked about the brachytherapy option. That is where they insert a catheter inside the breast and radiate from the inside.
I don’t want that…why am I even asking?
I feel myself shaking.
She wants to see the size of the cavity that has been created in my breast from all the surgeries. A technician comes in and whisks me off for a quick CT scan.
All I need to do is slip my arm out of the paper shirt and lay on the table with my arm over my head.
Easier said than done.
It still hurt to raise my arm over my head and keeping it there for the duration of the scan was a real test of my pain tolerance. And I wasn’t winning. There were tears in my eyes as she pulled me out of the machine.
I needed help to lower my arm and I dried my eyes as she led me back to exam room to wait for the doctor. I was visibly shaken when I arrived and my husband asked if I was okay.
“Should I do this?” I ask him desperately. I can see the fear flash briefly in his eyes before he says all the right things to calm me down.
My armor is cracking under the fear of the unknown.
The doctor returns with a black and white picture in her hand. “Are you sloshing?” she asks me. “What?” I reply. “You have an air pocket in the space where the fluid is and some women report a sloshing sensation when that happens.” I assure her that I have not had any sloshing.
She holds out the picture and explains what we are looking at, the ribs, heart, lungs, my right arm, breast tissue and a gray half circle with a black triangle above it on my left breast. The gray and black make up the cavity that was left behind after surgery, gray is fluid and black is the air pocket.
The cavity is the space of about a 2” x 2” cube. I should expect to lose 1-2 cup sizes in that breast.
I can’t lose that much…I only had 3 to start with.
I feel the familiar pains deep in my breast that happen when I talk about it. My heart hurts and I want to wake up from this horrible dream.
She tells me how precise radiation is these days and that modern technology allows them to inflict less damage on the surrounding body. One side affect is that the ribs on the left side will be more brittle. It is possible that too much coughing or too strong a bear hug could crack a rib on that side.
She continues her case for whole breast radiation and when she is done I ask if that means that brachytherapy is not an option. It is an option and on the plus side it may cause some scar tissue to build up on the inside and help fill in the cavity so I won’t have as much disfigurement.
I want to run out of the room.
I try desperately to find that rock solid resolve I had against radiation when I left the house this morning. I’m no longer sure of myself. I can feel my power slipping away.
I’m so overwhelmed I have disengaged. The doctor asks when I see my surgeon for a follow up, the next day I tell her. She advises me to talk with the surgeon and then call the office to schedule my radiation.
I ask if I can have the picture.
As I rise to leave I am unsteady on my feet. My husband takes my hand to steady me and we walk quietly to the car.
I sit looking at that black and white picture in my hand and I burst in to tears. I’m so confused. I had felt grounded and empowered when I left the house this morning.
Now I felt unsure what to do.