Almost Home

I sat with my sister in the hotel-like suite attached to the hospital, watching snow fall outside while women pulled up to the maternity entrance to have their babies. She had graduated to this adjacent space, an almost-but-not-quite-yet release from constant monitoring. After over a month spent inpatient for her transplant, this was a welcome reprieve from the constant lack of privacy in the hospital, but I couldn’t help feeling it was a glorified waiting room. She was well enough to live next door to the emergency department, but not well enough to go home.

Still, we made the best of it. One day my sister and I watched the new kids movie “Trolls” while a man who was obviously new to the housekeeping staff cleaned the suite and kept asking us questions about how to do his own job. Another time we half-heartedly played a board game at the small kitchen table with my mom. I could sense my sister was tense, coiled. She was so close to sleeping in her own bed, away from the generic sameness of rooms designed in beige and plastic, and yet she was all too aware that any little hiccup might send her back to her hospital room.

I will never forget the night I stopped by to say hello before I started my night shift and found her writhing on the couch, crying. My mom was standing there, a thermometer in her hand and a pinched look on her face. My sister kept repeating through her sobs, “Don’t make me go back there! Don’t make me! I can’t go back there!”

It was the rawest display of trauma, fear and despair I have ever seen. I will never be able to unsee it - my sweet sister, stripped of autonomy, her body wasted away to a shell of herself, bald and weeping. Screaming. She had kept her composure for so many eternal days in the hospital, too kind or proud or some combination of the two to break down in front of the hospital staff. She gave the nurses who cared for her small smiles, did the bare minimum to appease the physical therapist and the psychologist, endured a Christmas with her least favorite nurse on duty who treated her like a seven-year-old.

And now, four little digits that happened to be higher than 100.4 degrees Fahrenheit broke her. Whatever wisp of willpower had been sustaining her calm and collected facade evaporated and was gone. The gap between felt emotion and verbalized output deflated into nothingness, leaving only raw pain behind.

My mom turned to me for support, the sister turned oncology nurse turned referee who could give a judgement call. Technically, according to her doctors’ orders, any temperature higher than 100.4 necessitated reaching out to the on-call nurse. I couldn’t risk saying my sister would be fine and then knowing it was my fault she went into shock or worse. My mom set her jaw as I’ve seen her do hundreds of times when faced with an unpleasant task and made the call. I had to walk away to start my shift, leaving my mom on hold and my sister breathing heavily from her outburst of grief, silent tears replacing the noisy ones.

I don’t know how I even worked that night.

Due to providence or negligence or accident or miracle, my mom never got a call back. She left a message for the on-call nurse, but within an hour my sister’s temperature had gone back down. She checked it faithfully through the night and it never rose above the cutoff again. Obviously there was some sort of breakdown in the communication chain, and my mom brought it up to the team as a safety concern like I knew she would, an advocate and social worker to her core.

But to this day, I harbor a small belief in a corner of my heart that God crossed the telephone wires that night. After letting my sister down so many times, God reached out a pinky finger and tipped the scales in her favor for once, in this tiny, weighty way. I don’t really want to believe this, as the cynical part of my brain rolls its eyes and asks God where He was for the rest of her cancer journey. But I can’t seem to talk myself out of it.

I brought this experience up to my sister recently and she doesn’t even remember it. Perhaps this means she broke down like this more than I thought, and I only witnessed it once. Perhaps this means her exhausted body decided not to keep that traumatic memory, letting it slip into oblivion out of a sense of self-preservation. It’s just one more example of how everyone experiences the cancer journey differently. This memory is quite possibly my absolute least favorite of the entire experience, tied only with her initial diagnosis and the news of her relapse.

How do you process grief for someone who is still alive? I’m grieving whatever part of her died in that fake hotel room attached to the hospital, whatever part of her soul was cried out in her tears and her screams and the sweat of her fever. Cancer has taken things from us we can never get back. And it’s given each of us some memories we cannot unshackle ourselves from. I walk around with two metaphorical stones in my pocket, aware of the heaviness of the world. One the heavy joy of her precarious wellness, the other the heavy grief of her losses. I think the only way forward is to get used to the weight.

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How do you cope with all the loss that surrounds a cancer diagnosis, even if the patient survives? Would you say it’s given you a richer understanding of life, or burdened you with a tinge of sadness on everything you see - or both? Let’s unpack this in the comments.