This time last year, I was living in a two-bedroom apartment in Los Angeles with my delightfully eccentric roommate and a very large poster of Angelyne. My biggest concerns were that my new bathmat seemed to have contracted fleas, and that the workers doing construction on our complex always left their boom box right underneath my window. (I awoke, more often than not, to the dulcet tones of “Genie in a Bottle.”)
I had just returned from my first real trip abroad to Italy with my mom, I had a fair amount stashed in my savings, I had a job and a band I adored -- it wasn’t a glamourous life, but it was mine and it felt ripe with possibility.
My mom and I have always been extremely close. She’s a feisty, warm, brilliant person with an almost gravitational charisma. She was the person I always felt safe with, who I could be vulnerable with. We’ve been through tough times together -- my parent’s divorce, my stepfather’s death. But I can count on one hand the number of times we fought, and we never stayed angry with one another for more than a couple hours.
So when she called me, shortly after Thanksgiving, to tell me she’d fallen off a ladder and hit her head, the fear that zipped through me left me breathless. She reassured me she was OK, it was just clumsiness, but I could hear a tremor in her voice. Shortly before we hung up, she casually mentioned one other thing -- when she’d had a CAT scan of her head at the hospital, they’d noticed a spot on her brain. Probably nothing, she said: The doctors weren’t worried at all, but I’ll get an MRI in a couple weeks just to be safe.
I promised I wouldn’t worry, but as we said our goodbyes I felt a horrible knot of foreboding forming in my stomach. I told myself not to be foolish and overdramatic, that it wasn’t a tumor, it was probably just a little benign cyst like her doctors thought. But the worry stuck in my throat, and no matter what I did I just couldn’t quite swallow it.
The call came a couple weeks later. It was early in the morning and I had worked late the previous night, so when my phone vibrated for the first time, I ignored it. Then it vibrated again. And again. Suddenly I was wide awake, my heart hammering. I rolled over to check my phone and, sure enough, there were three missed calls from my mom.
Hands shaking, I quickly called her back. Her voice sounded strained and disconnected, and I knew what she was going to say before she said it -- the spot wasn’t just a cyst. It was a brain tumor. She was having a biopsy that afternoon, she told me, so they could find out just exactly what they were dealing with.
Two hours later, I was on a plane back to Colorado. Four hours later, standing at baggage claim with my cell phone practically glued to my ear, the worst of my worst fears were confirmed -- it was stage IV brain cancer, and it crossed both hemispheres of her brain, rendering it inoperable. The entire world seemed to disintegrate.
Everything from that moment at the airport, listening to my stepbrother break the news from a hospital with bad reception, has been a murky, surreal blur. My mom, the adventurous, whimsical woman who at my age sold flowers on a street corner a la Eliza Doolittle, never really returned after that biopsy. The disease progressed with alarming speed -- first just a little trouble with speech and balance, then in a blink of an eye she was bed-bound.
There were radiation sessions five days a week for six weeks, an insane number of drugs, visits with her oncologists, visits with other oncologists for a second opinion. My aunt and step siblings flew out whenever they could to help, my mom’s friends provided rides and chocolate, and my mom qualified for palliative care. I adjusted to lifting her, moving her, helping her bathe and use the bathroom.
But the thing about life is, it continues. And as the months have passed, and my mom’s condition has plateaued, the urgency of those initial months has died down. Friends still swing by, but not as frequently. My aunt still visits, but for less time -- after all, she has a job and a family in another state. Palliative care was discontinued -- ironically, aside from the tumor devouring her brain, my mom was “too healthy” to qualify.
This isn’t a knock on anyone. They are still wonderful and provide as much support as they can. But there’s still a feeling of being…left behind. As if I’m standing with my nose pressed to the glass, watching as everyone’s life continues to grow and expand, while my mom and I remain frozen in time.
My mom needs 24/7 care, so aside from the three hours, five days a week when we have Dignity Caretakers, I’m home with her. It’s a strange existence. Our roles have completely reversed -- now I’m the one that makes her dinner, that helps her get dressed and tells her no, it’s only 10 a.m. so we cannot start watching TV yet.
Our relationship is one big unknown -- sometimes she’ll get furious with me over trivial things, or look straight at me and call me the wrong name. However, every now and again, we’ll laugh about some article in a magazine, or she’ll stroke my hair, and I’ll see a glimmer of my mom in there. Those moments are the most heartbreaking ones -- potent reminders of what, exactly, is being lost.
She’s made it a lot further than her doctors ever expected. Originally they predicted four to six months for her -- it’s been nine and she’s still hanging in there. My feelings on this are, to say the very least, complicated. I can’t bring myself to think of a world in which my mom doesn’t exist -- just typing that sentence makes my throat close up. But I’d be lying if I said I didn’t struggle with the day-in, day-out monotony, that I don’t daydream about a life that includes my own place, my friends, a job, the freedom to come and go as I please.
Recently, at a doctor’s appointment, we asked about how long he thought we were looking at. He told us ten, perhaps even 12 months, then paused and added, “Ten months from now, that is.” I’m ashamed of the horror that flooded my body when he said that -- imagining another year of no better, no worse. What would I do? How could I possibly re-enter the world after that much time, completely broke, any career momentum long gone and rootless? I felt sick at heart, selfish, a coward guilty of the worst kind of betrayal.
Which bring me to the crux of why I wanted to write this article. One of the worst things about this is the loneliness -- I have spent copious amounts of time online, scouring cancer caregiver forums for other people in my position. And, certainly, there are a depressingly large number of people afflicted by cancer, or caring for a loved one with cancer, out there.
However, the stories I’ve found are primarily told by the spouse, the significant other, the parent or the middle-aged adult. In fact, I have yet to read even one story like my own -- someone young, taking care of a parent by themselves, completely in over their head but still getting by.
But, because none of us are truly special snowflakes, I know there must be others out there in this same position. So to those of you who are: For whatever it’s worth, you aren't alone. I don’t know if, like me, that makes you feel less isolated, or if it’s a completely cold comfort.
But I know what you’re going through. I know what it’s like to be tangled up in emotions that are simultaneously selfish and selfless. It’s a head-first dive into a pool whose depth you can’t possibly gauge. And you’re not a saint (because nobody should ever have to live up to that expectation), and you’re not losing the most important years of your life (because there’s no such thing), and no one can guarantee you won’t walk away from this at least marginally damaged. I know I certainly won’t. But you will be OK.
And there will always be at least one stranger, out here in the great wide world, sending you love and enormous virtual goblets of wine. You are not alone.