I’ve sat down to write this blog post no less than 6 times. What do I say? Do I even want to reflect on what is happening, or do I just want to move on? Is it a permanent state, or just a moment in time?
My second opinion surgeon is a woman known for her stance that we are over treating women, that one day we’ll look back and regret the mastectomies that were not needed. And, her conclusion: mastectomy it is, scheduled for July 12. That timing is a bit of a sweet spot, allowing me to live my life for a bit but hoping the pre-cancerous cells don’t graduate into invasive cancer.
Despite the news, it was one of the most refreshing doctors appointments I’ve ever had. Even though Dr. Esserman was over 2 hours late, I didn’t mind it, because she spends so much time with her patients. Whoever she was with before me is equally important. But back to why it was good. The first thing she asked was, what are your goals? It felt like a refreshingly patient-centered approach. Well, my goals are to avoid chemo and radiation in the future if at all possible, and to determine if I have the stamina for ongoing surveillance and the scans and biopsies and false positives and positive positives.
She replied, if you had said that you wanted to save your life, then I wouldn’t recommend this surgery. There are no guarantees that a surgery is life-saving. But given what your goals are, the pre-cancerous cells could become invasive in between screenings, because those scans are really just a moment in time. And you’d be back at square one with the need for chemo.
We sat there, in the cramped dimly-lit room–me topless, Mike fidgeting from being away from work before tax season and likely rolling through some PTSD triggers–and made a pros-cons list of the mastectomy (that’s the pic attached to the blog post).
We ping-ponged back and forth in the conversation. Loss of body integrity. Lowering chance of experiencing chemo again. Taking away the worry of a new cancer developing in my formerly-healthy breast. Possible complications with healing and reconstruction. Zero sensation on my entire chest. Eliminating the option of breastfeeding. Permanancy. Improving survivor-related fatigue in a way (e.g., being tired of living with anxiety of follow-up scans), because I will never again have a mammogram, because technically, I won’t have breasts or breast tissue.
But maybe the biggest point that influenced Dr. Esserman, Mike and me to get the mastectomy is that, as she put it, we won’t be able to screen you if you get pregnant. For those 10 months, you can’t get a mammogram or MRI. And what is supposed to be one of the most joyful things in your life could turn full tilt into a state of worry and panic–is that lump my pre-cancer turning into cancer, or is it just natural breast changes during pregnancy? What is going on in my body that we cannot feel or see? Why am I bringing a child into the world with this horrible disease hanging over me? Is the other shoe really dropping, is my life ending, at this literal moment that I become a mother, and bring another life into the world?
Pretty compelling stuff.
Dr. Esserman said that perhaps in 10 years they will look back and realize the surgery wasn’t necessary. But, I will be living those 10 years and have time to make peace with my decision.
After we all agreed on the plan, she walked over to me, her face up close to mine and eyes parallel with her hands on my knees, and said, I know we’ve made this decision and you feel really good about it. But it’s still a loss. And you should be able to mourn that loss.
So maybe that’s why I have been stalled in sharing this with you. I’ve buried the feelings and haven’t wanted to think about the loss. That will come. I have time.
But the anger has been there, simmering around. My patience is short and my ability to care about other people’s piddly shit is nill. Why did these pre-cancerous cells develop when I’m on the hormone therapies that are supposed to protect me? It makes me question why I’m slogging to the infusion center each month for a painful shot (actually, it’s called an implant b/c of the thickness of what they deliver into my stomach), getting my blood drawn to measure estradiol levels, remembering to take my slough of pills each day. It’s all a crapshoot. Imprecision medicine.
And even though I adore my first team of surgeons, I’m going to switch over to Dr. Esserman. I’m a convert. And the shear convenience of having all my care team in one institution at UCSF is enough. I can’t tell you the hours spent on the phone dealing with insurance and medical record transfer and primary care physician crap.
After the surgery, we will be waiting on pins and needs for the pathology to come back, to be certain I do not need chemo. And this reality made me think of you all, especially as I read an article this week about “holding space” for others. To sum up and connect it to you, you have all held space for me–you’ve walked alongside me in my journey, without judging me, making me feel inadequate or trying to fix me. When you hold space for me, you’ve opened your hearts, offered unconditional support, and let go of judgment and control. I’m just sorry that I’m asking you to continue holding this space.
With cancer, the opponent is life. And I am out to live. Find light in the darkness, strength in the weakness. Light and strength = Mike and I are sipping wine en route to Italy for our fifth anniversary.
So, here we go.
Thank you all and much love,
PS 2 articles about my new surgeon are here: