My mother has cancer in her brain. On March 11 2007 she had a seizure, and the subsequent scan revealed a tumor on one side of her head. It's the bad kind - aggressive, resistant to treatment. The past twenty months have been difficult.
For me in particular, the issue is that I feel limp and powerless. It's not uncommon to feel this way, as everyone with cancer plays a waiting game to see whether or not the treatments will be effective. Nothing happens fast. Every time I visit her, something is slightly, almost imperceptibly, different.
Throughout the course of this process, I have observed my mother's body deteriorating from lack of use, as well as the destructive power of the radiation and constant flow of pills. The tumor itself has encroached on her motor skills. She can't walk without assistance, but tries anyway. Her balance is unreliable. She shuffles. She can't really use her dominant hand anymore, affecting her ability to write, type, bathe, cooke, clean, and so on.
Her mental acuity has suffered. She's had a lousy memory for a long time now, and I wondered if it was the beginnings of the tumor doing its work all along. These days it is typical for her to have trouble remembering some of what we talk about. Her speech is slurred, and she is annoyed at how she thinks she sounds drunk. She often doesn't seem to know what's going on. She smokes constantly. She is always tired.
My mother had become increasingly reclusive in recent years anyways, perhaps the result of aging. Her parents were similarly quiet, shy people. I am not like my mom in this way, at least not yet. At any rate, the only friends she has are her coworkers at Planned Parenthood in Bellingham, where she was a medical assistant for several years. She pretty much only saw them at work, however. Now that she has been home constantly for over a year and a half, she sees almost no one. She shares her life with George, to whom she got married when I was seventeen. They moved to Mt. Vernon around the same time, sitting in a house more and more full of clutter. The two of them spent most of their free time alone together, television blaring, surrounded by cats and a couple of small dogs. Sometimes they would head to the woods with the dogs, watching movies on the van's DVD player, breathing mountain air. If I wanted to pay a visit, I had to notify them a day in advance.
None of that has changed; they are still alone together in that house, television blaring, pets orbiting them like satellites. I still have to let her know if I plan to visit. Except, now she is trying to beat back an aggressive, deadly growth in her brain.
I have played the part of the hopeful son, doing my best to indicate that they wouldn't treat her it weren't treatable. Visiting her is something I want to do very much - more than before. All I really want is access. I want to sit near her and the pets, playing board games or simply being in the room while she goes about her routine. But I don't have a car. Instead, I hitch rides with my friends, and have been fortunate enough to have friends who let me borrow their car once in a while.
George is a superstar who sees to her care, making sure she is getting all of her medications on time and keeping her appointments. They don't seek out help, and in fact eschew it. George is in control, and seems to resent anyone else attempting to influence her day to day care. I'm not particularly interested in subverting that, and am grateful for his presence. His only concern is her recovery and safety, to the exclusion of anyone else's needs, like, say, mine. I understand his desire to protect her, but I want access to my mother. If I'm accompanying them on a visit to a battery of medical practitioners in Seattle, I want to push my mom in her fucking wheelchair. I won't be told by anyone that I can't or shouldn't or am not capable of safely pushing her across the street, so please get out of my way while I do this teeny tiny thing.
I am frustrated, obviously, at feeling marginalized in this process. I'll let my uncle do the research and try to talk my mom into pressing her doctor to talk to a specialist he found on the internet. I'll let George handle her pills and appointments and bathing her and the heavy lifting. Here is what I want: I want to know when anything happens or changes with her condition. I want to hear all the news about tests or MRI's or whatever. I want all the new information. I want to be called and I want that to be a priority. I want to be able to spend time with her as often as she can bear my presence, doing nothing, or doing something easy. Finally, I want to be treated with respect by both of them, and not treated like an afterthought, or like I am irresponsible.
With all this rattling in my head and hearts and bones, a month ago I found myself at a support group meeting for survivors of brain cancer, as well as their care givers and family members. It was held at Northwest Hospital, and this particular meeting only happens once a month. I went alone. With my mother's current state, as well as her shyness and hatred for Seattle traffic, there was no way in hell she'd be there. I arrived seeking an outlet for my feelings of frustration, hoping to be able talk about the things my mother often seemed too spent or overwhelmed to hear me say.
Seeing survivors going through a similar process of attempting to live with cancer is what has the most stirring effect on me in these meetings. I am also encouraged by the stories of people in some version of my position, sitting outside the head of the sick person, wanting to help somehow and feeling powerless to do so.
Tonight I attended my second meeting. Just hours before, I learned that mom had finally started chemotherapy for reals. She has reached her limit for radiation, and the tumors are still spreading and growing. The chemo began on Friday, and she was immediately sick - exhausted and vomiting. I sat quietly in the group with two therapist types, three other caregivers, and four survivors. I shared my frustration when called upon, but mostly I looked at the floor. All of these people have seemingly vast webs of support from family and friends, and welcome it. The contrast with my mom and George, their desire for privacy and solitude, was striking. I did hear some of what I think are my mom's own feelings from the mouths of the survivors: I hate to be a burden. I feel guilty for the trouble I caused. I also heard, to a lesser extent, some of my frustrations flowing from the caregivers: I wish I could do more. I want to be closer.
The pit in my stomach grows. Hunching over I brush bits of dried autumn leaves from my shoe. The sister of a survivor begins to cry and I offer her a box of tissues, while an attendant from the parking lot barges in looking for the bathroom. I hate this. I hate the disconnect I feel from my family right now. I'm certainly talking to my uncle more than I ever thought I would, but nevertheless this tiny world my folks live in is repellant to me. I know loneliness with a familiarity I'm sure anyone could relate to, but I also boast a large and ragged band of friends. When I build a family of my own, I intend to infuse it with that same strength and closeness. I never want to feel alone in a crisis, and I never want to shut anyone out.
The meeting wound to its end, and one of the therapist ladies produced a poem she had picked out to share. I consented to read it aloud to the group, and did so with all my English major sobriety, radio DJ timing, and personal affection for inflection.
The Journey
Mary Oliver
One day you finally knew
what you had to do, and began,
though the voices around you
kept shouting
their bad advice—
though the whole house
began to tremble
and you felt the old tug
at your ankles.
"Mend my life!" each voice cried.
But you didn't stop.
You knew what you had to do,
though the wind pried
with its stiff fingers
at the very foundations,
though their melancholy
was terrible.
It was already late
enough, and a wild night,
and the road full of fallen
branches and stones.
But little by little,
as you left their voices behind,
the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognized as your own,
that kept you company
as you strode deeper and deeper
into the world,
determined to do
the only thing you could do—
determined to save
the only life you could save.
