The Caregivers

"The Architect's Brother," by Robert and Shana ParkeHarrison.

“The Architect’s Brother,” by Robert and Shana ParkeHarrison

~ For Bunny and Helen

 

At last, in the MRI waiting room, I’m alone. It’s been eight weeks since we were last here. As usual, they have been eight weeks of feeling maxed out, mentally spinning through each day with little respite, but now respite has arrived. I have an hour to wait while Jaylan gets a brain scan to assess the state of his tumor.

I choose a space to sit that will allow me to nurture an internal silence while he’s in the machine. I want to slow the mental revolutions. I want to stop time. The fish tank offers white noise and an isolated corner, but inside the tank, like all the others in the hospital, live representations of the characters from Finding Nemo invite children to exclaim loudly and bang on the glass. I want distance from the entrance to the radiology wing and from anyone without the sense to mute their devices. This is not the place for the bling-chirp of video poker or a thirty-second clip of your yapping dog. Be quiet. People are suffering.

And no one is suffering like us. No one is happy to be here, but Jaylan and I must be the least happy, the most anxious. There’s a tall muscle-dense young man in sweats. I label him: athlete. Torn ACL. The heavy woman in the wheelchair: bulging discs. How uncomfortable. I know that some must be waiting on cancer patients, as I am. But they don’t know what it’s like for us. They don’t have brain cancer like us.

A minute later, I discover I’m wrong. The woman to my right clad in a bright green outfit and a prominent cross-shaped pendant is chatting with a couple who are on their way out. They’ve recognized each other – the man in the couple knows the woman’s son from the Navy. They’re both here for the brain scans. They’ve both got cancer.

I eavesdrop shamelessly while they swap stories. The woman’s son had a complete resection. That means his tumor was removable –that it was removed. He’s four years out from diagnosis. The woman can’t say enough good things about the neuro-oncologist. I silently agree with her. It turns out we have the same doctor. I’m leaning toward them now, my pulse picking up speed as I wait for an opportunity to join the conversation. I should tell them about Valcyte, the drug that has been so pivotal to Jaylan’s treatment. I shouldn’t miss the chance to share the thing that seems to be working for us.

When the couple leaves, I finally speak up. I’m sorry to eavesdrop, I say, but we have the same condition and the same doctors. Her eyes communicate understanding and compassion, triumph and certitude. Her son has young children, she tells me. He’s four years out and doing great. She tells me I’ve got to stay positive. I’ve got a higher power, she says.

We compare treatment regimens: her son had a complete resection; Jaylan’s tumor was unresectable. Temodar, a pill-form chemo and the first line of chemotherapy for GBM, worked for her son, but it was so hard. All that throwing up. But it worked—her son has been progression free for more than three years. Conversely, Temodar didn’t work for Jaylan. After six months of watching the scans, the doctors had to make the call: they could no longer assume that the subtle worsening of each scan was due to late radiation effects; it must be tumor growth. Her son never had infusion chemo. Jaylan endured bi-weekly infusions for eighteen months.

A new voice enters the conversation from the left. My son has it too, the new voice says. The new voice belongs to a woman with six inches of gray hair that meets a burgundy shade in a sharp line near her mouth. She needs new shoes. My son has the same thing, she repeats.

The woman with the higher power and I cannot believe the coincidence. How old is he? Does he have any children? When was he diagnosed?

34. Yes—eight. Three months ago. Her eyes speak sorrow.

The first woman’s son emerges from wherever patients go when their names are called. He looks fantastic – anxious, perhaps, but energetic. As he approaches, it is clear that he is the sun to his mother’s earth; her light comes from him, from the spring in his step. His mother makes introductions and explains to him our common bond. We exchange pleasantries, well wishes, and even a joke: since we’ll all be in the neuro waiting room next, could somebody pick up some coffee? His laugh comes easily. We bask in his energy. He leaves it behind and the woman with the sorrowful eyes clings to the glow as she checks her experience against mine.

How old is your son? When was he diagnosed?

My fiancé. 31. We’re two and a half years out.

Is he in a walker?

No.

She tells me that her son cries all the time. Two years ago, he was fired when he started having trouble getting up for work on time. He had relationship problems. He started dropping things. Three months ago, he had a massive seizure and was diagnosed with glioblastoma multiforme. She doesn’t know what to do when he cries.

Her son’s a big guy. I remember passing him on our way from the car to radiology. Jaylan never used a walker, I explain, but he got really slow during radiation. It took several months for him to get back a normal gait.

I see her take this information in. I see her wonder if her son will ever not need a walker again. I watch her consider that we, Jaylan and I, have no idea what she’s going through. She is absolutely right. I am sharing moments of our past, Jaylan’s and mine, to explain to her what is happening now to her and her son. My words don’t do my memories justice any more than they accurately reflect her present. Our experiences are similar, but not the same. Her son is thirty-four years old, has been out of work for two years, has eight children, and uses a walker. Jaylan has a job, volunteers at the zoo, and is in graduate school. He can drive. He can pick up groceries. He can take the dog to the park. I can’t understand what it’s like to be her. And do any of us really know what it’s like to be the patient?

We’ve only just met, but the sharing is so intimate, so intense. We know everything about each other, and we know nothing. I haven’t taken care of myself in months, she says. In response, I realize that I am not who I thought I was. I see that I have suddenly shed my tragedy queen identity – I am now a beacon of future survival, a walking expression of hope. I am well being. I am proof. Or rather, I am the representative of Jaylan, the person who is all of these things. I sit straight-backed with a head full of research and years of experience beyond where she’s been. Still, I recognize my past in her present. Things are stable now, but there are still days when life is heavy as a dying star gathering mass toward an inevitable explosion.

Jaylan appears and the waiting is over.

He’s gorgeous, she says, watching him approach.

Isn’t he gorgeous?

His smile only increases his beauty, which I am sure she notices as I make introductions. We exchange names, clasp hands, wish each other well. Jaylan and I walk away, leaving her behind. We’re headed for neuro.

The wait for the doctor is too long this time – it is at least twice as long as the usual wait. Later, Jaylan and I agree never to have appointments on Wednesdays. Wednesdays are when the doctors hold their “tumor board,” a meeting in which new cases are introduced, old ones reviewed, and what else, I can only imagine. It’s the only logical reason we can come up with for why so many GBM patients found themselves in the same room at the same time: all the docs are in today. Sure enough, there’s the surgeon, as we make our way back to the consultation room. I wonder if he remembers us.

By the end of the day, I am exhausted from the anxiety that builds subconsciously toward each MRI and from the moment of its release when the doctor pronounces the word “stable.” I am exhausted from the waiting, and from the interaction with the other women, the other caregivers to other beloved young men. For now, for our family, the great gathering of energy can be released. My shoulders will soon relax and fall away from my ears. I am tired and alone in it; that is, I know only my own tiredness. How exhausted Jaylan must be.

One by one, the other families leave. We shake hands. We smile big. We wish well. Then it’s our turn to go. The members of my family system return to their regular orbits. We leave the hospital and rejoin the slow swirl of time.

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