For the dying, it is only an idea
Dana-Faber Cancer Center, Boston — Yawkey Cancer Center. People move through the building like those in an office. Check-in. Wave at the guards directing us to windows. “Name? Birthday? Do you have a port?” Get a sticker and a fresh mask. Move along.
Second floor. Phlebotomy. Check-in. Name? Date of birth? May I check your wristband? Locator tag. Take a seat. First names and the first letter of your last name. See? You have privacy here. No one knows who you are. Isn’t this the moment when people want to be seen? Look at me. I am still here. I am not my disease. I am a person.
Sixth Floor. Sarcoma. Check-in. Name? Date of Birth? Show me your wristband. Do you need your parking validated? Take a seat. First name and the first letter of your last name. Privacy is important. Your turn. Name? Date of birth? May I check your wristband? Blood pressure. Temperature. Oxygen level. Weight. Follow me to your room.
I am not the patient. I am the advocate. I am moral support. I am the friend. I am only a traveler in this place. Staring around the room painted off-white with one pale blue wall, there is really nothing to see: the obligatory reclinable exam table, a small sink, a kind of built-in desk with a computer, a short wheeled stool, and two uncomfortable plastic chairs. She sits in one, and I sit in the other.
Someday, this will end with the oncologist telling us that there is nothing else to try. We knew this when she got diagnosed. Right now, she is doing well. The tumors are shrinking, and no new ones are appearing. We call it progress. It isn’t. It is a pause in disease progression, but for now, it is hope and having hope is what gets me through chemo day.
When the doctor called and told her that they found cancer in the uterus she had removed, he was hopeful. “It came out with clean margins.” A follow-up scan showed no signs of sarcoma. That was last November. Now it is August and, while the tumors that grew all over her abdominal cavity, are in retreat, it is only a matter of time before they reassert themselves.
Time is what we have now. “Wait here.” Waiting uses up that precious time. It is necessary. It is the space we have to breathe between the frantic rush to get blood tests and getting the results. The results tell us if she is getting chemo this week. If the liver values are good, she gets chemo. If they’re high, the trip into Boston wasn’t worth it.
Either way, we wait. We stare out the window at the construction across the street. “They’re working outside today” or “Looks like that’s going to be the HVAC system” pass for conversation. Some days there are no signs of construction activity. We talk about concerts she wants to attend or her niece’s pregnancy. Or we sit in companionable silence looking at Facebook and telling each other tidbits from our walls.
Some days we make plans. “We could get a burrito and eat it in the park.” That is always one of the plans in the background. It rarely happens. Usually, she is tired after getting up early, driving an hour to Boston, getting blood work, and waiting, so I just drive back to her house.
We have to gear up for chemo. She has to remind herself that while it tires her out and makes her feel sick, it is helping, at least for now. I have to be her memory and her cheerleader. “Did you take your pills?” “Do you have your phone and earbuds?” “We’ll be home in no time.”
Chemo itself is boring. She lies in bed with an IV running into the port in her chest. She listens to music, or chats, or sleeps. I watch the timer. It always starts at one hour and twenty-five minutes. At first, the machine is loud and fast. It is priming the line. Ringer flows in, and then there is a click. Now the pace slows. Everything slows. The Gemcitabine starts to drip into the line. The timer is at one hour and twenty minutes.
I read the New York Times on my phone while she settles in. There is always a period of settling in. She arranges her legs. She squirms, semi-reclined, and adjusts the pillows and blankets. As soon as she gets settled, the cart lady comes. I have no idea what the cart lady’s actual title is. She has a small trolley with cookies and crackers and what passes for sandwiches. In reality, these sandwiches are two large buns with one piece of deli meat and nothing else. My friend almost always gets a bag of cookies. I have real food in the cooler I carry on chemo days. We call them chemo days whether she gets chemo or not because to call them anything else would let too much uncertainty creep into our hope.
Zoë is back at our friend’s house with Daxton. There is no reason for them to come. They send GIFs to our group chat: a kitten playing with a ball, a raccoon driving a toy car, a sparkling flower with I love you written on it in purple glitter. In between the GIFs, I send Zoë updates: Liver’s high, or Just got into the infusion area, or Nurse is here with her meds. This is our connection to the world outside the hospital.
Later, Zoë will text asking what our friend wants to eat when we get back. Zoë and I are bakers, chefs, and short-order cooks. We arrive the day before chemo day and cook dinner. We make breakfast and things to pack in the cooler. We cook whatever our friend asks for or mentions. We joke with her, “It is our goal for you to die round.” “You’re doing a good job at that!”
The timer is only at fifty minutes. Time is slower in the hospital. It drips down from a plastic bag and has to run through the tubing, under the sterile dressing, and into the port. From there it spreads out through her body. It is part of the magic that creates hope, but the price of having it is waiting. The nurse comes in and chats. We talk about whatever pops into our heads: the weather, concerts my friend has been to recently, the lack of artwork in the room. It always ends with the same things: “Call if you need me.” The nurse leaves. The timer is at 42 minutes.
“Do you want something to eat?” I list off the current contents of the cooler. There is always something in it that she will eat. This fills up the waiting time. I set up the food on the tray that I swing over the bed. I get her something to drink. The cooler provides that as well. I set my lunch at the edge of the table and sit back down in the uncomfortable plastic chair. After we eat, I gather the empty containers and put them back in the cooler.
Death is not the problem; waiting around for it is. -Charles Bukowski
She asks how much longer. The timer is miraculously at 23 minutes. We are both tired. “So, what do you want to eat when we get home? I can get Zoë to have it ready.” “Let’s text her when we’re in the car.” 20 minutes.
She settles back into the bed. She might listen to more music, or talk about people she wants to visit. She has been to Colorado, New Jersey, and Oregon recently. She is going wherever she wants to go. “The thing about not working anymore is that I can do whatever I want if I’m not too tired.” She goes to concerts almost every week. She likes a lot of jam bands, and many play in central Massachusetts, where she lives. Sometimes she stays for the whole concert, sometimes she leaves at intermission. It doesn’t matter. She is doing whatever makes her happy right now.
There is a loud beep. It doesn’t stop. It is the IV complaining that it has run out of Gemcitabine, and it is angry. We ignore it. A nurse will show up and press two buttons, stopping the Gemcitabine and starting the Ringer again so that line gets flushed. I am always glad when the nurse arrives. The beep can be annoying.
Sometimes I dream bout the beep. In my dream, we are in the hospital, but it is not chemo day. She is dying. There is nothing for me to do but wait for the beep. I know it is coming, and I know that once the nurse shuts it off, I will not hear it again. I wake up at that point. I suppose that I don’t want to spend my time waiting for that beep, even in my sleep.
The Ringer doesn’t take long. It is done a minute or two. The nurse waits patiently for it to finish and stops it before it can beep. I start gathering the things we have used: our phones, her earbuds, our drinks. The nurse pulls the IV line from my friend’s port. We can go now. We are done waiting.
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