This is my first day in the infusion suite, it’s jam-packed with fidgeting patients. There must be at least forty people here for chemotherapy or an infusion of some sort. I’m sort of glad to be here because I have been eager to get started on the process of getting this aggressive cancer out of my body.Small beds line the far wall for folks who are too weak, or sick, to sit up. Those of us who can sit are led to green, plastic-covered reclining chairs. It reminds me of a mash unit and it smells like coffee. My watch says 8am and I try to get comfortable in my corner plastic lounger as Mom and Kip, my partner of fifteen years, settle into the small visitors’ chairs.
Five days ago, a rubber port was placed by a surgeon under my skin. It looks like a penny sized tumor jutting out just below my collarbone. It hurts and is as black and blue as an old dog bite. I’ve been told that I will get used to it, lovely.
The port is directly attached to a vein in my neck and is supposedly much better than having a needle poked into my arm every time I have an infusion. My fear of being stuck with large needles on a regular basis is second only to the fear of losing my hair.
The first nurse promises that I will barely feel the prick as she gently injects skin numbing lidocaine beside the port. It pinches but isn’t too bad. I have to look away as she unwraps the saber like infusion needle and firmly pokes it through my skin and into the port.
I feel nothing! I grin at her in relief.
The second nurse is all smiles as she hooks me up to the first of the five drugs I will receive. “This is a pre-drug” she explains. “It will reduce the chance that your body will have a reaction to the next one.” It works well now, but the next time I’m here for chemo, it won’t. A serious allergic reaction will leave me unconscious for forty-five minutes before they are able to revive me. I’m glad I didn’t know that on this first day.
As the magical pre-drug starts its swirling journey through my veins, I glance at the guy sitting down in the chair next to me. Am I supposed to say hi? Should I even look at him? I quickly look and nod hello. He nods back. I’m embarrassed. I would want more personal space if we were strangers at a grocery store but in this very vulnerable situation, we are packed together. Its uncomfortable, and yet, reassuring to have someone nearby who is also trying to slay a personal dragon.
Mom and Kip are chatting now about what they expect to happen and how they will pass the time. “I’m sure we’ll be here all day.” Mom announces this as if she feels the need to justify her presence to those around us.
“She will have five drugs and they can’t be given together,” Kip replies, stating the obvious.
“Lunch should be good here. They must bring the first food to the cancer patients, don’t you think?” Mom says to no one in particular.
“I think her legs are starting to twitch,” Kip whispers.
Holy hell people, I’m sitting right here!
They are talking too loudly. I don’t think everyone in this room cares about what’s going on over here. I know they love me. They are nervous too, but I feel invisible, like an attraction to be commented on.
As I become more anxious, my vision darkens to a tunnel and their voices are echoing around inside my head. I wish they would stop talking, but I have no control over them so I focus on the guy next to me again.
He looks to be in his forties and I can see that he is bald under his Minnesota Vikings ball cap. He is peaked, pale, puffy and looks like he has been through it. This is clearly not his first day. He wears crocks on his swollen feet and shifts carefully in his chair looking for a comfortable position as his nurse hooks up his IV port to a bag of saline. His wife has pushed her chair close and is tucked up against him, legs pulled up under her, quietly reading her novel. He asks me why I’m here; I tell him that I have breast cancer and then I add, “this is my first day.” He nods and smiles kindly at me, he gets it. I am feeling a little better.
Lunchtime comes and volunteers bring tasty sandwiches and soup, Mom is thrilled. She is also determined to stay beside me for the whole time but after we eat, Kip reminds her that today is the only day this month that the free wig bank is open and convinces her to join him in the search for the perfect wig for me. Kip has been bugging me for days to get a wig. I am not sure why he feels so strongly about it. I still have all my hair and feel like it’s too early to think about it, but this is a chance for them to get out of the infusion suite for a while and so I encourage them to go have a look.
Finally, alone, my thoughts drift to a few weeks ago.
When I first learned that I had cancer, I spent long hours cautiously searching for information about what to expect from this disease and the treatment. I learned about Roxann Whitebean, a young First Nations woman from Canada who made a very honest documentary of her journey through treatment for advanced breast cancer. I was up all night watching it. She started with the intention of documenting the process of losing her hair but it quickly became a much deeper experience. Roxann is a stunning young Indian woman who had the most luxurious flowing black hair. It was part of her identity. When she danced at tribal gatherings her hair was as much a beautiful part of her native costume as her clothes. I think, like me, she thought that if she could figure out how to cope with her hair loss that the rest would all just fall into place.
And maybe, there is some truth to that.
Roxann, surrounded by friends in her kitchen, had her hair cut short into a cute bob. It was a ceremony of power and a way for her friends to show their support. Later, when it started to come out in handfuls, she had it shaved off and went wig shopping with her sister. I was surprised when she bought a blond wig. “It makes me happy,” she said.
I would have thought that a woman with such deep tradition and such a tapestry of culture in her life would want to hold on to that and not become something completely different. But when I thought about it, I realized that I admired her self-confidence and ability to make a choice that made her feel good even though it made me uncomfortable. It was very brave. No one laughed at Roxann and that wig became a tool that allowed her to feel almost normal when she needed it.
I was inspired.
All of a sudden, I am aware that three people are standing in front of me with big smiles. Mom is shoving a box into my hands while Kip introduces an older woman with bright orange hair and bawdy makeup as a volunteer from the wig bank.
“We brought the wigs to you!” he happily announces. They are all three so excited and I am completely horrified.
Mom is stuffing a plain brown wig on my head and announcing that it is perfect while the orange-haired lady is crazily brushing out another one!
You must be kidding me; this can’t be happening.
I catch a smirk from Mr. Minnesota Vikings in the next chair. I must look like a cornered cat because he quickly sobers up and says, “It looks good.” Bullshit, I’m thinking, but I know he still gets it.
The orange-haired lady is waving the next wig at me. I wonder if her own hair is real?
Ok, now everyone in the room is looking and I am beyond embarrassed. This has to end and end now! “I choose this one,” I declare as I pull it off my head causing my own hair to stand straight up from the static. “Box it up and I’ll take it home.”
The orange-haired lady happily collects the other wigs and waves goodbye as Kip plops his butt in a chair and grins triumphantly at me.
“I knew you would want a wig,” he crows.
Idiot, I think.
A few weeks later, I go by myself to have my long hair cut short, which is powerful and I do love my new short hair. But finally, when the toxic chemo drugs take control of my body and all the hair on the carpet is mine and not the dog’s, I ask Kip to shave my head.
There is no head shaving party with friends and it takes only a few devastating minutes in the bathroom, between innings of the Red Sox game. I face away from the mirror and stare hard at the broken blue button on his shirt as he carefully finishes smoothing my head with the soapy razor. “I’ll clean up” he says and kisses the top of my head. “Go make some tea.” He doesn’t suggest that I look in the mirror or make a joke about how bald suits me because now, he gets it too.
The next afternoon, my friend Anne-Marie offers to shave her head, as a show of support. I am grateful but I ask her not to do it. It would be like looking in a mirror. I don’t even want to look at myself and if I have to look at a bald Anne-Marie every day, it will only make me angrier about what is happening to me. I do try on the mousy wig from the wig bank but it is so severe and dark. I am already getting a pale gray hue to my skin and even though I am now thinking that I might want a wig, the dark one makes me look dead. What about blond?
I think back to Roxann and her stunning blond wig. No one laughed at her and the beautiful light color made her look more alive instead of pale. Half dead. I decide to give the blond wig a try. I can be brave too. I can’t let what people might think of me matter anymore. I realize that the most important thing is to love myself and show up every day exactly as I really am.
Roxann clearly knew something that I am just starting to learn:
Cancer changes everything.