On my unit, we rarely see the newly-diagnosed cancer patients. By the time they arrive on our doorstep for transplant, they've been through at least a round or of chemo, sometimes even a prior transplant, and definitely been indoctrinated by the Clinic with at least a rudimentary knowledge of self-care and a set of expectations for their transplant. Many patients have done their own extensive research on their disease, the treatment options, facilities, etc. So while I still answer a lot of questions and do a lot of patient-educating, it is usually from a very matter-of-fact place. It may sound cold to say this, but in reality, my patients are cancer patients first, and then become real people to me second. It's inevitable...the first thing you learn about someone is their disease, their treatment, their lab values. You focus on this and then later the details of them take form...they are also someone's mother, or sister, or teacher. In their 'other life' they spent the majority of their time gardening or traveling instead of getting chemo and puking.
Last summer, working in another medical-surgical ICU, a young woman was admitted and immediately assigned to me, as I happened to have a lot of oncology experience. She showed up at the ER with some vague complaints, nothing too troublesome. She had hoped for some pain meds and a comforting, routine explanation for her headaches. After all, she was young and otherwise healthy. She was starting a new job the following week and wanted to be ready to jump into it. Then a routine blood test revealed a type of blood cancer in an advanced stage of crisis. Within 24 hrs, she had been admitted to the ICU, had two invasive central lines placed, undergone a procedure which removed all her blood from her body and separated the white blood cells, and heard words like "cancer," "leukemia," and "chemotherapy" thrown around.
By the time I meet her, she is feeling okay but her eyes are nearly swollen shut from crying and her voice is hoarse. I tell her the experience I have in oncology, in particular this type of cancer and treatment, and ask her if she wants to talk about anything or ask me anything. She mutely shakes her head, then whispers, "I don't even know what to ask. I just have stupid questions,"
"There are no stupid questions at all," I say.
"Well, I don't even know how to act. When other patients find out they have cancer, do they just cry all the time too? Is that normal?"
"Oh my god of course it is!" I told her. "It probably wouldn't be normal if you didn't cry!" Later, she asks me:
"Will you tell me something? No one else will tell me this, but have you ever seen anyone with this disease get better? No one will tell me if I could die. All they tell me are numbers."
How do you tell someone who is barely in her mid-20s that yes, she could die? That unfortunately, you see more people who die from this than who get better? That some of the things she is going to go through are going to make her want to die?
"It's cancer. The treatments for it are really really hard. Yes, you could die. But you could live, too. People do, and I've seen them. It's one day at a time, sometimes one hour at a time, and sometimes that's the best we can tell you," and I even get a bit teary as I squeeze her hand, till one of us makes a silly joke to break the mood and laugh a little. I tell her what I often tell patients, how I've seen how amazingly strong she is, and how much love I've seen surrounding her from her family and friends, and that more important that any medicine we could give her. When I say this, I believe it a little more than I usually do. I think I say it almost as much to comfort myself, and to give myself hope, as much as I do for her. She is a person to me first, and a disease second, even incidentally. She worries about losing her gorgeous long hair and makes jokes about the revealing hospital gowns, she wears funny socks just because she can and her friends start a blog for her. And knowing how dangerous it is, I let myself hope. Really hope. Some people do get better from this. So why not her? It has to be her.
After our initial meeting last summer, I could count the number of precious weeks that she was actually out of the hospital versus in it. She died last week, in my ICU. I wasn't her nurse but I don't know if I could have been. Even though I feel like I should have been. For her. I had trouble even helping her nurses with her, because I found myself just staring at her face, her swollen-shut eyes and her bald head, searching for traces of that brave, funny girl I met last summer.