Updated: Jun 17, 2021
And I'm sure she'll want chocolate cake. She's done a fantastic job and this is her celebration. But I still sadly have to let her go.
In a few days I'll be having a mastectomy ( I don't use that big, scary word around her).
And it was a difficult choice to make.
Background Music Please
For those of you unfamiliar with my story, in June of 2019 they found stage 3 breast cancer- multiple tumors in my breast and a positive lymph node biopsy from under my right arm. The standard protocol: chemotherapy, immunotherapy (Herceptin and Perjeta), surgery and radiation.
I would not be taking that path.
Instead, I chose only immunotherapy-a road almost never taken with my diagnosis. But that wasn't all. As you'll read in my other posts, I overhauled my diet, enlisted an army of vitamins and supplements, Chinese medicine, acupuncture, Reiki, and started the journey into emotional and spiritual healing. Phew!
Six months later, my cancer was no longer visible on any scans or imaging. I had what was called a Complete Response. Overjoyed beyond measure! I never wanted surgery and this was the news that solidified my choice. I had read a study from MD Anderson Cancer Center about women who kept their breasts after a complete response to their treatment. My circumstance was a little different but it was the fuel that I needed.
Even so, they still advised I take off the breast. There is always the risk that microscopic cancer cells are left in the breast. From the very beginning, my gut had always been no. And that was the right answer for me at that time in my life.
I did not complete the recommended number of immunotherapy treatments.18 seemed like too many. They were hard on my body, and right at the time COVID hit the US. The risks seemed too high.
With clean scans, I thought and believed I was done with cancer.
And I was for that time.
In late December of 2020, I received the worst Christmas present ever: my yearly MRI showed breast cancer again. And what they believed to be lots of it. But the imaging was different this time, and thus all the confusion.
Instead of defined tumors, the imaging showed a non-mass enhancement (described to me as wispy gray smoke that filled much of the breast). Nothing showed up on the ultrasound (again, because it was not a solid mass). The MRI- guided biopsy on one section of the breast was positive for the same cancer I had before (HER2+). So the assumption was that the whole mass was cancer.
But was it?
There was also the possibility the imaging was showing of a buildup of dead cancer cells, tissue and inflammation. With my type of cancer people don't usually keep their breasts. Was this something they were not used to seeing? Was some of this healing debris?
Additionally, for a long time I had been using breast oils that were to break down any solid masses. I stared in the fall of 2019, and continued on and off through 2020. My acupuncturist told me only to use a few drops, but in hindsight I was doing more like a light slather. Whoops. Too much. In her mind, the imagining could also be showing some of that residue breakdown that the body hadn't cleaned out fast enough.
Yes, there was breast cancer. But was it really as extensive as it looked?
Back in the Saddle Again
After two immunotherapy treatments I noticed a big difference in my breast. My oncologist was thrilled. Even before I started, she believed this would be easy to conquer. And it was sure looking that way. A little while after the 3rd treatment, things still felt great, and in late March 2021, I had an MRI.
The imaging showed no difference. Nothing had changed. This made absolutely no sense. I felt the difference. I knew things were getting better. My oncologist was also perplexed not having seen anything like this before. However, she initially said the proof was in the pudding and to go with my body. I asked for more eyes to look at the imaging and my case went to a group of surgeons, oncologists and radiologists called the Tumor Board (sounds creepy, doesn't it?).
The general consensus: my treatment wasn't working. Take off the breast ASAP.
Now I was up against the white coat establishment and what I believed to be true. I respected their expertise and training, yet in the back of my mind I harbored doubt. I knew they were wondering why my body wasn't responding to the treatment the same way. Or at least, that is how it looked on my imaging. They only way to know was to take off the breast and examine it throughly. Now. Before it "spread."
This was the hardest thing I had ever gone through in my whole journey. In the past, the ongoing imaging and scans throughout my treatment backed up my fervent beliefs in how my decisions for healing were working. Now it appeared they weren't.
Left to trust in myself, I was faltering. I didn't know what to believe.
Fear Marches In
If I ever had to walk the talk, it was now. I was clinging on to wobbly training wheels, terrified to let go and believe. Put to the spiritual test. Again.
I quit my treatments. They said they weren't working. They must be right. I must be wrong.
But something didn't feel right. But I was so overwrought by fear that I couldn't "hear" myself. Anyone with cancer knows the mental battle can be as strong as the physical. One cannot ignore the mind/body connection. It's integral to healing.
To make matters worse, they wanted me to do Herceptin and chemotherapy until the surgery date (that I still hadn't made). A NO to chemotherapy on my end. My oncologist knew from the past how I felt. She did, and has always respected my instincts.
With this type of cancer, there are still treatments after surgery. What upset me was that if the immunotherapy wasn't working I would have no other non-chemotherapy options after surgery. No matter what the imaging showed, I had to prove my body was responding.
I was drowning in indecision and fear of making the "wrong" move. My perfectionism at its worst. Agonizing. This fear and stress wasn't helping me heal. And so I did nothing medically. Sometimes that's ok. The right answer would come. I could not make a fear-based move I might later regret. I had heard too many stories.
Then things got worse, but in the end, better. After 6 weeks off the immunotherapy treatments, I could feel my breast changing- not for the good. I immediately called my oncologist. I believed the infusions had been working, and I wanted them back. My gut was to do two more and then surgery. After the second treatment, I immediately felt a huge difference in my breast (for the better!). And that's where I am today. Everything feels nearly normal again.
Was it just the treatments or was my body initially responding to my internal stress? In the words of my dear friend and noted holistic physiatrist, Jodie Skillicorn, "Maybe your body needed the time and space to safely heal at a different level."
The Price is Right
For anyone who has watched my late grandmother's beloved show (she once told her physical therapist to sit his butt out on the porch until the credits rolled), you'll find The Big Doors. Behind them lay the biggest prizes. Choose wrong and you might end up with 100 cans of Campbell's Chicken Noodle Soup. Choose right, and the sky's the limit.
The door I'm choosing to have surgery didn't come easy. I whole-heartily believe in the body's ability to heal itself. Was I giving in and not giving it enough time by going under the knife? Or was I taking huge risks by not moving forward? Would this just keep coming back? I didn't want to live that way. Wondering.
I had a lot of people praying for me. Finally, I felt tremendous peace what to do. And it didn't come from me.
No matter what they find, or don't find, at least we'll all know. No more questions. I feel a certainty that I didn't before. The timing is right for me now. It wasn't then. Sometimes we don't know the whys. We just have to trust our instincts.
In terms of my own emotional and personal healing, taking off my breast doesn't mean that it's over for me. Cancer often has strong emotional roots. You have to heal the source. I'm still digging and unearthing what no longer serves me. Nurturing what does. Sometimes I even feel the sun on my back. I'm not alone.
So tonight, we raise our glasses to this brave little boob and the fierce woman who carries her.