Stories By Wildfire: Not Quite Alive
There are things I’m absolutely sure of. I’m sure that the smells of baking bread and rain on hot concrete are two of my favorite things. I’m sure I could never have imagined the love I would feel for my baby until she was in my arms. I’m sure that the place I feel safest is wrapped in my man’s arms. I’m sure I love color, and light, and the wild poetry of life. I’m also sure that I liked my small life just fine before I was diagnosed with cancer. I’m sure I didn’t need a wake up call, or a clarifying moment, or any of the other things people say to spin a cancer diagnosis as a positive experience.
I’m sure that I’m sick of doctors and needles and positive attitudes and pink ribbons and risk statistics and nurses, even when they are kind, which they almost always are. I’m sure I’m sick of people telling me I’m tough, even though part of me likes to hear it because chemo is fucking hard and I need acknowledgment of that. But I’m sure that I’m tired of hearing I’m tough because I’m tired of needing to be tough and I’m sure I’d like a little bit of easy in my life for a while.
I’m sure no one really knows why I have cancer or how to prevent it in the future. I’m also sure that no one is really sure if the treatment they have offered will cure me but they think it probably will and that’s as sure as I’m likely to get, even though I’m sure I’ll never ever hear the word “cure” come out of my oncologist’s mouth. I’m sure I never thought I’d use the phrase “my oncologist.”
No one else was sure how my body might respond to any of the four chemo drugs or the six other chemo support drugs, so a nurse sat down with us and read the entire, incredibly long list of possible side effects, which included things like extensive hair loss, heart failure, lung failure, mental confusion, black finger nails, mouth sores, loss of taste or smell, neuropathy, diarrhea, constipation, vomiting or nausea, bone pain, allergic reaction, fatigue, headaches, infertility, menopause, and death.
I’m sure I stopped listening to the list at some point because if I heard any more I might never show up at the infusion center and sit quietly while they hooked me up to a bag of drugs that included a possible side effect of death to my veins, in the hope of saving my life.
My best friend and my partner were with me on the day of the side effects list. My best friend was taking notes for me, so professional, asking the nurse to stop to spell a drug name, making sure she got all the information down correctly. She was engaged and friendly and calm, while my heart was pounding and my partner’s eyes had glazed over when he was unable to take in any more. Later she told me that she went out to her car and sobbed. Sobbed for my soft and fragile body, for knowing now what I was going to have to go through in a way she hadn’t quite understood before. She sobbed for my courage in the face of it.
I didn’t cry that day because I was afraid if I started crying then I would never stop. But I have cried since then. I cried when the anti-nausea pills didn’t work, and when I was too exhausted to lift my head from the pillow and join my family at the table or on the couch. I cried when my hair came out in handfuls and I stood under the shower spray with clumps of it running down my body and clogging up the drain. I cried when the medication that kicked my bone marrow into high gear made my bones and joints ache so much that I had to tell my daughter I couldn’t hold her or cuddle her, that she can’t even touch me or jump near me because it is too painful. I’ve cried when I can’t eat, and when I can’t taste the food in front of me. I’ve cried when I’ve been so sick for so many days that I’m afraid this time I won’t be able to climb out of it, that this collection of symptoms that is something short of death will be my not quite life for ever.
I cried even when I did start to feel better, because in another three weeks I would have to go back again, knowing the next infusion would make me that sick again, or worse. I cried when I couldn’t remember my sister’s name and once at the grocery store check out stand because I couldn’t remember my PIN number and the person in line behind me was staring at me while pretending not to. I’ve cried because even after the chemo is done there will be still so much more treatment ahead of me. I’ve cried because even when I’m done with the treatment, even if I get an all-clear diagnosis, I’m so afraid the cancer will return, and I’ll have to do this all over again and again and still, no one can tell me why I got this disease or how I can prevent its return.
I’m sure that I don’t want to be called a cancer survivor, even though I’m sure that I will survive this thing, at least this time.
Doña Bumgarner. Blogger. Diagnosed age 42. Stage II, HER2+, ER/PR-. Doña lives on the Central Coast of California with her partner and their young daughter, along with a collection of cats and chickens. She’s a maker, most often with words and paint, but sometimes also with food, glue, glitter, or yarn. She blogs & podasts about self care and creativity at NurturedMama.net.
Editor’s Note: This piece has been republished with permission from WILDFIRE Magazine, inaugural “Phoenix” issue (Vol 1, No 1, Copyright (c) April 2016 by Wildfire Community LLC). More information available at wildfirecommunity.org
WILDFIRE Magazine is the only magazine for young women survivors and fighters of breast cancer under 45 years old. Headquartered in Santa Cruz, California, WILDFIRE is a beautiful, story-based bi-monthly magazine published on different themes relevant to young women survivors, from stage 0 to stage IV. Beautiful and ad-free! Visit wildfirecommunity.org for more info.