One night a few weeks later, after I’d gotten a second opinion and my surgery date was on the calendar, I woke up at 2 am and could not go back to sleep. At my second opinion appointment, the team at Dana Farber had inspired me with such confidence in moving forward with my treatment there, that it made me sound like a marketing brochure when I tried to describe it. It was the most expert, clear and comprehensive experience I’d had since my diagnosis, while at the same time validating that I had received excellent care up to that point. Because my local team had done such a thorough job with all the diagnostics, we could move forward right after the consultation. I was somewhat spoiled for choice actually, because if chemo or radiation were to be indicated later I could do those at my local hospital, the protocols being the same. But my decision to be treated at Farber was one of the easiest ones I’d have to make.
By the time I arrived there I was certain about having a bilateral mastectomy, and no one tried to dissuade me from it. My medical oncologist did want me to understand that it was not medically necessary to remove both breasts to decrease any chance of recurrence. He explained to me that the cancer in my right breast couldn’t come back to my left. If cancer returned in the left, it would be considered a new occurrence. He cited a trend against breast conservation in the spirit of, “I don’t care, just take it all,” which was less than informed and fear-based. But when by way of an illustration he told me, “Listen, if you get a flat tire on one side of your car you don’t replace the corresponding one on the other side,” I burst out laughing and told him, “Dr. Burstein you can never say that again! You have to come up with a better metaphor immediately!” His Harvard Medical School fellow, standing up against the door of the exam room, looked like he was biting his tongue to keep from laughing with me. If my doctor wasn’t used to being challenged like that, he took it in stride and shrugged. Only someone who did not live with breasts daily would say that. But he’d probably just gotten the biggest laugh from the toughest crowd he’d ever worked. And I did not take anything away from that interaction except his sincere desire to make sure I had all the information I’d need. He got my point and I got his.
There was nothing left to do now except consult with my plastic surgeon (who would scrub in with my oncology surgeon) and wait. And try to relax.
I was used to waking up in the middle of the night. Some nights I would fall back to sleep after a couple of hours of tossing, other nights the only thing that would put an end to it was the alarm signaling it was time to haul myself out of bed and start the morning. But on this particular night it seemed I had awoken to a visitor at the end of my bed, a personification of every worry I’d ever had transmogrified into a supervillain version of myself. One who was well prepared for a long night of tortuous obsession. It was She Who Wanted to Get to the Bottom of This Shit.
I’d met her before. She’d been a regular at these slumber parties of doom and gloom. But clearly she had been exposed to some kind of gamma radiation or perhaps the MRI’s had activated her superpowers. I’d never seen her like this before. It was as if now that decisions had been made, she was done being the patient, in fact she was done being patient full stop, and she was coming for answers.
She demanded to know exactly how this had happened. And why. She shoved a clipboard full of lists at me, long ones, detailing all the risks I had ever taken or been exposed to mentally, emotionally, spiritually, physically. Metaphysically. She had chalkboards filled with graphs and exhorted me to get out a pen and paper so I could participate. What had I eaten? What chemicals did I unknowingly expose myself to? What about the effects of trauma? Grief? Secondhand smoke? Growing up in L.A. in the 70’s and 80’s without using sunscreen? Was my current water supply safe? What about my soul and the agreements I’d made in that contract? What had I, knowingly or unknowingly on any level of consciousness, done or participated in that had caused a bunch of cells in my right boob to go rogue?
I got the sense that “It’s just one of those things” was not going to be an acceptable response.
She had miscalculated one thing, however. I was so exhausted I just couldn’t do this. Not again. I’d had endless nights like this when my husband was sick. I literally had no fight left, which concerned me when well-meaning friends reassured me that I “would beat” this diagnosis and I “would fight it and win.” I knew I was done fighting. Even if I had believed it was the right approach, which I didn’t, if that was what was required I was dead.
And I certainly had no energy left for Midnight Susie, Supreme Wielder of Obsessive Fire, either. I almost reached for a pen but then stopped. I looked straight at her, and said, “Listen. I love that you want to figure this out. It shows that you care. And I would love to understand it too. I’m sure that as much as humanly possible we will find the answers we’re meant to, in the way we’re meant to. But I need you to understand something. There is an entire field of research currently dedicated to figuring this out, as well as a whole lot of people working hard to find out the why’s and how’s of treatments. And none of that changes the fact that in this actual moment, there’s a tumor in my boob.”
She was stilled by this, so I continued, “Right this second, I am alive. And what I need is not to go to all pre-med/psych/soc/philosophical with you off a cliff. In this actual moment, what I need is to go back to sleep. I am happy to discuss this with you during business hours but right now I need sleep. And so you have to leave.”
It worked! She disappeared. And I fell back to sleep with a slight smile on my face, but not before I let myself cry for a while, just cry and let myself feel sad for all of it in a way I hadn’t allowed myself to. Sad for how scared I was. Sad for how scared 12 and 14 were. I’d lost my husband to such a vicious cancer and I’d spent so much time trying to figure so much out, and at the end of it I’d assumed nothing that bad could ever happen to us again. And then something had indeed happened, nowhere near as bad but possibly the worst thing that could happen next if you were in charge of picking out next things.
But of course, we weren’t in charge. That was clear.
Just before I drifted off, I noticed someone again beside my bed. Not her again, I thought. But it was the opposite of a supervillain.
It was my husband. My recently and dearly departed dead guy. Who was wringing his “hands” trying to use them like he used to — trying to reach for me, to soothe me, to hug me and then hold my hand while he told me everything was going to be okay. The closest he could get was a sort of energetic fist bump of his aura against mine.
It was his longing for me that pierced the veil first, his deep pull toward me as pure as anything I had ever experienced. I would give everything to be there with you now, he said. Incarnate. I would come back as a bug just so I could be in a body and breathe the same air as you. Please, I need you to use your heart to feel how much I love you and how much I want to comfort you. I only have one thing to give you now and that is love. Love and reassurance. Okay, two things. Love, reassurance, and hope —
“Three things,” I said, as I laughed through my tears. And then I noticed.
He was “crying” too.