I was without my co-pilot today.
No, not God (I actually did see a “God is my Co-Pilot” bumper sticker today). Joli. My Joli. For the past few years, Joli and I have been graciously invited to Professor Sheila Barry’s class. I usually recount the emotional journey that we took on the day Joli was diagnosed through her enucleation, chemotherapy, and recovery. Joli then talks about retinoblastoma in her own words, fields a few questions, and then closes out the show with a grand finale: removing her prosthetic eye. It’s quite a crowd pleaser!
Now that Joli is getting older, it just doesn’t feel right to take her out of school to join me in this class. So, this year, for the first time, I talked about her journey — Joli’s Journey — without my partner. It just didn’t feel right. I found myself looking at the empty seat at the front of the classroom, imagining her there, sipping on chocolate milk or eating the remnants of the triple chocolate doughnut that Prof. Barry usually gives as a treat. I felt sad she wasn’t there, knowing that this day would come eventually.
Last night, my sister Grace watched the kids as my hubby and I went out for our first date in, gosh, I don’t even know how long — years? Grace, a pre-vivor who had a prophylactic bilateral mastectomy, said that my son had fallen asleep on her chest and soaked her shirt from chin to chest. Joli saw the dark puddle on Grace’s yellow shirt and asked, “What IS that, Tita Grace?” Grace looked down, saw the wetness on her shirt, and realized she didn’t know it was there. She couldn’t feel it. She couldn’t feel the cool clinging of cotton to her own skin.
Grace feels numb from the bottom of her neck to the top of her stomach. With the removal of her breasts came the removal of the nerves. She can trace feeling from her stomach to her chin, like a record skipping grooves, that disappears in the 8 inch space over the curves of her implants.
By the time I finished talking about retinoblastoma in Prof. Barry’s class, I am emotionally exhausted. Yet, I know the rhythm – share information about retinoblastoma, then share information about being BRCA positive.
Sheila Barry and I have this very wicked joke that something always changes whenever I talk to her class. In the course of our relationship, Joli was diagnosed, then we talked about Joli’s journey, then I found out my sister Mary had cancer, then I found out I was BRCA positive, then I brought my sister Grace along to talk about her mastectomy, then I began to talk about my own BRCA choices. Planned to run a 1/2 marathon before a mastectomy in July. Postponed said mastectomy. Then, rescheduled for November.
I can pretty much get through these presentations with a mix of science, fact, and a bit of humor. Sometimes I fight back a few stray tears, but I’ve had enough distance from Rb — and kept my distance from BRCA — to stay focused. Yet, today. Today was different.
As I was describing the surgery, I used sweeping motions to illustrate the amount of tissue that would be removed from my body. Rather than just remove the bumps that protrude from my chest (aka –my breasts), the surgery actually requires removal of tissue from just under the collarbone, extending well into the side of my body, and deep down by the rib cage. As I encased the large area that would be removed, my body froze. I actually froze. At that moment, that very singular moment, I felt like I was going to faint.
I felt my body go completely numb.
The next thing I know, I’m crying. I can’t find the words to finish my thought. And, I can’t move my mouth to finish my sentence.
I felt completely numb.
I hear a student just to the left motion to me and saying, “I have a tissue. Do you want a tissue?”
I stepped towards her, terrified that I haven’t blinked. For a split second, I’m terrified that something, anything, awful happened when I went numb. God, did I pee my pants? Did I black out? Did I just utter jibberish? Did anything embarrassing happen in this numbness?
I’m not sure how much time passed — maybe seconds? — before I heard my voice say, “Sorry. I’m back. I’m back.” I was still standing. Still dry. I scanned the room for confusion, wondering if I said anything inappropriate or incomprehensible.
No. They were still there. They were still with me.
I recovered. I became aware of my hands clutching something soft. I remembered the student, turned to her and thanked her, and tucked the tear soaked tissue into my pocket.
I am terrified.
Being brave is all well and good, friends. Being courageous, strong, faithful, a role model, an inspiration, and a superwoman — all of your words throughout this journey have warmed their way into my heart. Words I never in my life imagined would be connected to my name. Liza.
Yet, as I inch closer to my appointment on Wednesday and to a surgery date, I am terrified. I am scared. I am afraid.
When I run, I feel the pavement strong beneath my legs. The air cool within my lungs. I feel the determination, the will, and the commitment within my heart as it echos within my head. I feel both the pride and the humility when I read your kind words. I feel a sense of connectedness when someone looks me in the eyes – or writes to me – and tells me I’ve inspired them.
And I wonder, after all of this ….
what will it feel like to be numb?
Peace, love, and warmth,