Keeping secrets

On June 20, 2011, a Monday morning, I woke up in the hospital bed next to Sandy. I knew — as did the rest of her family and her close friends — that the MRI results on Saturday had been devastating. I knew that the cause of the previously unexplained nausea and pain were now apparent. But Sandy didn't know any of this.

She'd regained lucidity on Sunday, for the most part. She recognized people, and she understood that she was in the hospital. But she wasn't fully present. After Mindy and I met with an oncologist that morning to discuss treatment options (and to affirm that Sandy would not have intrathecal chemo, requiring a hole drilled through her skull, if she was not lucid enough to make that decision herself), I'd gone home to try to get some rest. I'd puttered in the garden, made some phone calls, snuggled the cats, and tried to sleep. But thoughts of losing Sandy haunted me and filled my veins with anxiety. Despite my exhaustion, I couldn't fall asleep through hours of soothing music and guided imagery. Eventually, I dropped off just long enough to have nightmares, and I woke in a panic. At 1:30 a.m., I wrote in my journal, showered, and then headed back to the hospital, arriving just about 3:00.

There was a nurse on duty in Sandy's room because she was at risk for falling. I whispered to that nurse as I entered, asking how Sandy was doing. From the other side of the room, Sandy asked her sister, Mindy, "why is Brie talking?" Mindy told her I was checking in with the nurse because I'd been gone for a while, and Sandy insisted that I hadn't been. After the images that had flooded my head over the past several hours while I was away from her, I was delighted to hear her voice, even if she was grumpy and confused. I walked over to kiss her and she asked if I wanted to crawl into bed with her. I did, and I slept well, despite the need to avoid tubes and wires and to wake when techs came in to take vital signs. Feeling her body next to mine, muttering back and forth with her occasionally — I could live in the present and take comfort from her existence.

But I felt awful keeping the truth from her. She'd been barely conscious when we learned the news, and I didn't want her to hear it before she could comprehend it and cope with it. So I'd asked everyone to speak of the cancer's spread and possible treatment only when they were away from Sandy. I was nervous about how to tell her, and when. But that Monday morning, she opened the door for me.

At Arches in May, we went into a public bathroom together,
and I was carrying the camera. I started snapping photos of
her, completely forgetting we were in a bathroom. But she
didn't mind my indiscretion then, and won't mind it now.

I accompanied her to the bathroom. That was where we had many of our private conversations during that initial hospital stay; that was where we became the two of us again, figuring things out together and supporting each other. That morning, she complained that her head hurt. I told her that radiation should help with that. She asked me why it would help, puzzled because the last she knew the doctors hadn't associated her headaches with the two small lesions in her brain. I told her the MRI on Saturday had shown that cancer had spread in her brain, and that the doctors had told me that radiation was the best way to alleviate her symptoms. She shook her head and said, "I had an MRI?" and then she embraced the information and the hope that the radiation would help. We didn't know yet whether radiation would start that day at the hospital, though Mindy and I had been advocating for it to start immediately. Sandy agreed that it was important to get started right away.

I hadn't told her about the cancer in her meninges and the rest of her spinal column yet, or about the treatment options I was pretty sure she'd decline. But she knew part of it, and absorbed the information without apparent trauma. I was much relieved.

A little later, we were down on the radiation oncology floor where she was getting fitted for a new radiation mask. A radiation oncologist stopped by to talk about treatment. She mentioned the cancer in Sandy's spinal fluid, but in the context of her belief that we didn't need to radiate Sandy's neck, because the brain radiation would affect the spinal fluid as it traveled through the brain. I'd tensed as the doctor began talking, afraid Sandy would feel betrayed that she hadn't had this information, but the doctor made it sound matter of fact and couched it in hope for the radiation's effect. Again, Sandy took in the information without apparent trauma. And I was unburdened. In fact, I was exuberant, excited by the prospect that the radiation might treat the other cancer as well, or at least get a head start on it

Later that day, I was able to talk to Sandy about my decision not to tell her the news until she was able to take it in, and she respected and appreciated that decision. Though I'd felt I was lying to her — something I never would have done in other circumstances — she didn't see it that way. I told her then that Mindy and I had talked with a doctor about treatment options, that I doubted she'd be willing to do them, and that I could tell her about them whenever she wanted to know but it might make sense to wait until she'd had more radiation. She asked not to hear about it just yet. After that conversation, she knew everything I did, and everyone was free to talk openly.

I'd seen TV shows and movies, read books, heard stories about people keeping information from a patient, and I'd always felt pretty strongly that that was wrong. I knew that if I were a patient, I'd want to know everything about my condition and about other things in life. So I was surprised at how strongly I felt that this information should be kept from Sandy until I had a chance to share it with her when I knew she could understand it. I do think it was the right thing to do, and Sandy thought so, too. But it was one of the harder aspects of the entire ordeal, especially because I often found my strength from discussing things with Sandy. In fact, I still do.