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BirdsEye Viewi don't want to eat
HPI: Ms. B is a 65 year-old woman with a 35 pack-year smoking history and stage IV SCLC s/p 6 cycles cisplatin/paclitaxel without improvement who presents from clinic with vegetative depression and failure to thrive. About 3 weeks prior to admission, Ms. B finished her first round of chemotherapy to treat metastatic SCLC. During treatment she reports having many side effects, including skin rash, nausea/vomiting, and headaches. A post-treatment CT scan shows progression of her disease, with lesions in the long bones and liver as well as the lung. CT head does not show any brain lesions. She was scheduled to begin cisplatin/irinotecan chemotherapy at clinic today, but upon presentation appeared dehydrated and thin. She reports that she has not eaten for 1 week. Her daughter, who came with her to clinic, also reports that Ms. B has been taking in very little fluids. Ms. B reports that she is “not hungry,” and that she “knows she should eat” but does not want to. She does not report nausea/vomiting/abdominal pain. She does not report any SI. Of note, she has lost 10 lbs over the past 2 weeks and per clinic notes, her affect was very flat. She was admitted to the hospital for vegetative depression and failure to thrive.
I know that sounds crazy, and maybe I am, but I just don’t want to. Nothing sounds good. Not even strawberry ice cream mixed with strawberry Boost, my go-to meal since chemo. I’m losing weight. My family is worried.
My family. I know they want me to eat. I think they know that I’m trying. I would eat for them, if I could. I just can’t. And now I’m sitting in the oncology clinic, again. Having the conversation about chemotherapy, again. I’ll listen.
And then my daughter mentions the fact that I haven’t eaten in four days. That I just say I’m not hungry and move on with my day. Which is true. I’m not hungry, and the days go on, don’t they? The oncologist’s face scrunches into a worried frown. He asks me why I’m not eating. Why do they keep asking? I just don’t want to. Nothing sounds good. He asks me if I feel depressed. The small part of me that is still alive laughs at that. Depressed? Me? With stage IV lung cancer and the most miserable three months of my life behind me, with more miserable months ahead, hooked up to an IV pumping in chemicals that make my skin feel like it’s melting off my body, make me nauseous, make me tired? Wouldn’t that make anyone welcome death, welcome him like an old friend?
But I can’t think like that. My family. They need me. My children. My husband. I can’t fail them.
I just don’t want to eat.
My daughter explains that I would force down food maybe once a day. But that stopped four days ago. I couldn’t force it anymore. Not even when my husband looked at me with those hurting eyes. Not even when my daughter was crying in the kitchen when she thought I couldn’t hear. I can’t force it anymore.
But I just tell the doctor that I don’t want to eat. Nothing sounds good.
His face stays frozen in that concerned pose. I know he wants to talk about chemotherapy again. I was supposed to start today. But now I can’t. Because of the dehydration. And the weight loss. I’m ruining his plan. He sighs. He says something about going to the hospital. I don’t see why. But my daughter’s face brightens. So I say I’ll go.
In the hospital, I get changed into a gown. They put a needle in my arm. They set me up in bed. The nurse is very nice. It’s a cancer floor. They know how to deal with people like me. The doctors come in. They ask all the same questions. I tell them again, I just don’t want to eat. I can’t force it anymore. Everyone leaves. My daughter says goodbye. A girl in a short white coat comes in. She looks nervous. She sits down. And she asks what is going on.
Well. I thought she was going to ask me about the food again. I answer that I just don’t want to eat. She says she heard from the others, but she repeats her question. What’s going on? And she just looks at me. Cocks her head like a dog does when it’s listening. And says nothing.
She told me later it was because she was so nervous; she’s a student, and she just didn’t know what to do or say. She was scared, so she did the only thing she could think of, which was to wait and listen. Now that I think of it, I could hear her heart beating from across the room.
She sits, looks at me expectantly, and lets the silence fill us up. We let my death be with us. It feels gentle, and the part of me that is still alive stirs. It says, I can’t force it anymore. It says, it’s not about the food – it’s about the fight. She nods, and my living part grows, exploding upward, rushing to the surface and bursting out of my face as I say aloud the things I am scared to feel. I say that I never wanted to fight this, to spend my last months in misery. I have had such a wonderful life, with my husband of 40 years and my two beautiful daughters. I have done all I have ever wanted right at home, in Waltham, I have made Halloween costumes and baked cookies and fought with my rebellious teens and my exasperating husband and made up with them and lived my simple beautiful fulfilled life. Suddenly, I am saying out loud that I do not want more chemotherapy; that I am ready to die. My living part, rooted within me and now blooming across my cheeks, demands to be sustained until my heart stops beating. This is not living I say, and it is worse than dying. It is something else, and I do not want it.
She still says nothing. And I come back to myself and remember why I started chemotherapy in the first place. I remember sitting in my doctor’s office after having pneumonia for months and months. It would get better with antibiotics but then it would come back once the pills ran out. My daughter, the preschool teacher, she felt so badly because she thought she gave it to me from her kids at school. She was sick before me, and then I was sick, but she got better and I didn’t. The x-rays kept coming back with things on them. I was still smoking cigarettes then; a decades-long habit doesn’t disappear just because you’re having trouble breathing. Then I started sweating heavily at night, and losing weight, and with the recurrent lung infections, my doctor said something about “post-obstructive pneumonia” and then there was a scan of my lungs and then another one of my whole body, and then all of the sudden there I was with my doctor and she was saying, cancer and then I couldn’t hear anything at all.
Of course, my two daughters and my husband came with me to the first oncology appointment. I wasn’t feeling too badly, actually, just drenching sweats at night and that annoying cough that wouldn’t go away. The oncologist starting talking about chemotherapy, and I thought, why, it’s everywhere, the cancer is in my lungs and my bones and my liver, and I don’t want to suffer but before the words could get out my daughters and husband were nodding along, comforted by the you-never-knows and the she-could-have-five-more-years and the we’ve-come-a-long-ways. And when they looked at me, brimming with hope, it was spilling out of their eyes and into their laps in a shower of golden groundless optimism, well, I couldn’t say no. And so I started chemotherapy and went from night sweats and coughing to nausea, vomiting, skin rashes, pain in my arms and legs, hair loss that hurt, and fatigue so bone-deep and wearying that getting out of bed became a Sisyphean task, yet another Greek tragedy struggling along in the Tartarus wasteland of my life. The scans came back with still more cancer, and I wanted to scream, but the shimmering insubstantial hope, it kept pouring out, out of my oncologist and out of my desperate, eager, wounded family, so much that I felt like it was choking me in a beautiful boundless flood but I couldn’t stop it. So when the oncologist said we should try again, I said yes, rather than stem that tide of belief. I have lived my life for my family and I would live my death for them too, if that was what they wanted.
But now… I just don’t want to eat anymore. I can’t force it.
And then I’m crying. The girl strokes my hand, says that I am so strong; she cannot imagine how a person can be that strong. She tentatively asks me if I know about a thing called Hospice. I do not. She says she worked in one for a summer and it was the patients there, like me, who inspired her to go to medical school. She tells me about it, about comfort and acceptance and symptom control. My living piece, pausing in its task of implanting roots within me, tells me that this is what we need, or we’ll go back to the not-living-not-dying place where not even strawberry ice cream with strawberry Boost tastes good. So I ask her to call the Hospice doctors.
And then it all happens so fast, my living part busily curling up past my ears in green growing tendrils as things move forward. A doctor comes and talks to me; and then we all meet, my oncologist and my family and this doctor who runs the meeting, and I say all the things I wanted to say months ago when the chemo started. I cry and my family cries but then the most wonderful thing happens. They tell me that it’s hard to let go, but they don’t want me to hurt. I know they can see my verdant living piece, the part that came from them and our years together, the realest thing I know, budding above my eyes and around my forehead, waiting. The ethereal flood of boundless optimism stops flowing out of them, stops crushing me. Instead, small searching vines of warmth, love, acceptance, support, everything, grow from them, down their legs, up my arms, right into my beating heart, and my living part bursts into full bloom. My husband’s hurt is still there in his eyes but then he takes my hand gently and says he will stand with me now, just like he did 40 years ago at the altar when we promised each other, in sickness and health, til death do us part. He says I have always taken care of him, and he asks me to let him take care of me just this one time. And I say of course. Of course. We’re all so sad but it’s peaceful too, somehow, comforting, real, honest, right. And I’m finally happy, now that I’m out of the not-living-not-dying place. The flowers of my life are around me, sustaining me. I’m happy now that I can be alive, right up until I die.
When the girl comes to say goodbye (because I can go home now, now that I’m alive again), we hug. I think for a moment, and then ask her to share a strawberry ice cream mixed with strawberry Boost with me.
It tastes wonderful again.