The five stages - denial, anger, bargaining, depression, and acceptance - are a part of the framework that makes up our learning to live with the one we lost. They are tools to help us frame and identify what we may be feeling. But they are not stops on some linear timeline in grief. – Elisabeth Kubler-Ross
I stopped reading my neat handwriting mid-sentence and caught my breath. It didn’t make sense. The phrase read, “Assuming Stage 2…survival ~70-80%”. It was written in a small gold notebook that I had taken to his first appointment with the oncologist.
The notebook had been gathering dust on a shelf. I didn’t re-read my scribbles after his first visit. The grief was too deep, and I couldn’t process the information anyway. It was a time of putting one foot in front of the other with a never-ending list of appointments that took him steadily on a path towards surgery, chemotherapy, and finally radiation.
Three years had gone by and now I read these notes for the first time.
Stage 2? This made no sense. His armpit was full of cancerous lymph nodes that felt like a handful of small rocks. Fourteen cancerous lymph nodes had been found during his surgery. An ultrasound had been done before this first visit with the oncologist; the matted lymph nodes had been found, biopsied, and determined to contain cancer. By the time he was diagnosed, there was no way that his cancer was Stage 2.
So, why did they tell us this? I sat down at my computer to confirm what I already knew. Stage 2 breast cancer can have a maximum of three lymph nodes in the armpit. If the cancer has spread to more than 3 lymph nodes, then the cancer would be upgraded to Stage 3. Ultimately, he had nearly five times more cancer-filled lymph nodes than someone with a Stage 2 cancer.
Warmth began to spread up my neck and face. My eyes burned and chest tightened. I rubbed my face and my eyes with both hands and covered my eyes. I knew what was coming but didn’t want to face it.
The anger was returning. Honestly, I thought I was beyond this stage of grief. To think that this emotional baggage might be finding its way back into my soul was also irritating. It was like a cycle of anger and irritation both at his cancer, his doctors and me. Deep down, I knew that the problem was more with me than with anyone else.
Yet, here was evidence that the oncologist had presented his disease and long-term survival as a possible Stage 2 cancer when that seemed very, very unlikely. Why on Earth would she have done this?
My first thought was that this was part of her subconscious tendency to “sugar-coat” his cancer and present the best possible case scenario, rather than the most realistic one. It was a pattern that we had noticed. Visits with her were always uplifting, which was good. But any potential negatives were mentioned in a tiny breath and quickly de-emphasized. When the extent of his cancer was finally known, she could hardly bring herself to say the survival statistics that we repeatedly asked for.
Part of me hadn’t completely forgiven the oncologist for missing the massive blood clot that nearly led to my husband’s death or for her lame attempt at an apology. I thought I had forgiven her and gotten over this. But when the anger came back, so did that old thorn in my side.
Stay focused, I told myself. Figure out what happened at this first visit and then it will become clear. My recollection of that visit was beginning to come back in pieces.
I remember that the oncology team was running behind schedule. A medical assistant had come in to let us know that their care conference had run late in which they were discussing my husband’s case – along with the other patients that they would see today. In the care conference, the results from his biopsy, mammogram and ultrasound would have been presented so that the oncologist, breast surgeon and radiation oncologist could discuss his case before meeting him on his first visit.
I recall that the oncologist and breast surgeon came into the room together, along with a trainee of some kind. They spoke to my husband briefly and asked whether we had any questions. Here is where the discussion of his survival must have occurred where I jotted down the “assuming Stage 2” comment.
Next, they performed the breast exam, which means that they pushed on the tissues in his breast and armpit to find any irregularities. One-by-one, they examined him in silence.
When their hands passed over his armpit, I studied their faces for a change in demeanor. Would they register surprise or dismay when their hands passed over the rocky lymph nodes in his armpit? I wondered. They kept their poker faces during the exam, just as I had kept mine with many of my patients in the past.
“We want to discuss his case for a few minutes and then we will return,” the oncologist said. They stepped out of the room, and we were alone.
In that moment, I felt as if they suspected that he had Stage 3 or metastatic disease. Yes, that is when they realized that his cancer was more advanced than they first realized.
I recognized that poker face. I also developed one during my medical training to prevent frightening a patient with my reaction until I was more certain of the diagnosis. Many times, I had performed an ultrasound on a pregnant woman and unexpectedly found a fetus without a heartbeat. Before telling the patient, it was our practice to have a second physician come into the room, repeat the ultrasound, and confirm the finding. I would keep my poker face while the second physician completed their ultrasound exam, looked at me, and nodded in affirmation that they could also not see a fetal heartbeat. Only then would I let down my poker face and tell the patient that her fetus died with all the compassion and kindness that I could possibly muster.
No! Don’t get distracted, I reminded myself. What happened next? Did the oncologist return and tell us that she was concerned that the cancer might be Stage 3 or worse? No, she didn’t. If she did, I would have written it down. I looked down at my notes again and found a few more sentences to decode.
“If three or fewer lymph nodes are positive and genomic testing is favorable….maybe avoid chemotherapy….but if chemotherapy recommended, it would occur over 3-6 months and be given entirely as an outpatient,” the notes read.
But why had the oncologist thought that he might have no more than three positive lymph nodes in the first place? Fourteen cancerous lymph nodes were found during his surgery.
“Darling…do you mind checking your electronic medical record for the ultrasound report where they found the suspicious lymph nodes?” I yelled down the hall. “I want to know how many lymph nodes were noted on that report.”
“Why?” he retorted. “What does it matter?” This information was meaningless to him, and I could recite the reasons why. He couldn’t change the fact that the cancer was there. He couldn’t do anything about it other than follow the oncologist’s instructions. Overthinking the whole thing was pointless and a waste of his precious mental energy.
“I want to know,” I said sincerely. “It’s part of my healing to figure out what happened at that appointment.”
He made a small noise as he walked down the stairs to the basement and his computer where he could log onto his medical record. The noise was a little grumble because he thought the exercise was pointless.
It wasn’t pointless to me. I descended the stairs with anticipation. I stood behind him where I could see the screen over his right shoulder and waited until he had opened a document. The text was too small for me to read.
“What does it say in the ‘Impression’ section at the bottom?” I asked. “How many suspicious lymph nodes did they see?” If the answer was more than three, the words “Stage 2” should never have been mentioned in his initial consultation.
He was quiet for a moment as his eyes scanned the page. “Three,” he said. “The ultrasound found three suspicious lymph nodes.”
My anger evaporated in that instant, and I fell silent. More than anything, I wanted to withdraw into a shell.
I know these feelings well, Kristina. I hear you. I've not looked back in my journals or at the email-vent-updates to my close-friends-family. Thank you for sharing the angst and grief. I'm sure many others go through similar 'reliving' moments.
Sitting alongside you with side-hugs.
Here's an article I wrote to share what helps me, in case it can offer some support to you too.
https://www.carermentor.com/p/resources-managing-the-mental-load