Earlier this month, we invited you to join “The Lucky Woman’s Guide to Breast Cancer” conversation.
We’d been bumping into people who, after they said, “Nice hat,” mentioned that they’d been sharing the stories with friends who are dealing with cancer. The articles, they said, reassure their friends that they are not alone in their fatigue, crankiness and optimism. They present opportunities to talk about cancer and how it’s affecting them.
Talk, I’ve been learning, is a big part of this long slog. I want to hear what drugs the woman in the grocery store was on, how they affected her, what her husband learned to cook and whether she gave up on vacuuming. I want to listen to the words the guy in the waiting room uses to describe how the fatigue affects not just his body, but his state of mind. I want to see an acquaintance’s new hair and hear how it compares to the stuff that fell out months ago.
This disease makes us selfish, and listening to how others are navigating it helps us gather the information we need to put our situation into perspective. So, yes, I was being selfish when I drew up a list of questions and asked people with cancer – any kind of cancer – and their friends and caregivers to discuss them. And, yes, I was being a good citizen at the same time. I think that the more we talk about problems, the closer we get to understanding, and possibly solving them. Perhaps, the more we understand about living with cancer, the more comfortable we will be with the people who are doing it.
Julie Hall and Carla Van Ess were among the first to jump into this conversation. They were open about their cancer, frank about their fears and finances and clear about the kind of support that works for them.
Hall, who is 45, lives in Tacoma with her two sons. She’s a foster parent and volunteers with the troubled kids at Remann Hall, so she’s experienced at dealing with big challenges.
“I have non-Hodgkin's lymphoma, Stage 4,” she wrote. “Right now, I am not treating it because I have no insurance. I recently left the corporate world and rejoined the service industry, working at The Boathouse 19.”
The diagnosis shocked and terrified her, but not because she was afraid for herself.
“When you hear the diagnosis of cancer, you immediately think of dying or death,” she wrote. “I thought about my boys and who would raise them if I died. I begged God to let me live long enough to raise them up.”
She considered the battle ahead, the toll it would take on her family. Well into that fight now, she has come up with a brilliant analogy for living with the disease.
“It's like being handcuffed to a vicious dog. A dog that you know can bite and kill you, yet you have to drag it along everywhere you go,” she wrote.
She hates that damn dog, but she’s learning how to fight the rage, on her own.
“I was, and still can be, angry. I often tell myself ‘why not me’ in lieu of ‘why me’ as opposed to someone else like a child,” she wrote.
The mental toll of fearing the unknown, the possibility she will cave under the cancer is the worst, Hall wrote.
The best moments come in circumstances she never imagined.
Hall is overjoyed by the phone calls that don’t come: the doctor not getting back to her immediately after a CT scan. With cancer, the calls that come right away are the ones bearing bad news. News of a clear scan isn’t an emergency.
“The cost of treatment can break you down. It really sucks,” she wrote. “Bill collectors calling, asking for large sums of money which most don’t have adds more stress.”
In cancer world, a single shot can cost $1,000.
Fighting means refinancing the house to pay medical bills, Hall said. It means garnished wages. “The system... drug companies, need to not be greedy and give all the same chance,” she wrote.
Hall assessed her strengths and weaknesses.
“Strength is in knowing others have it worse,” she wrote. “It’s in the long days in the infusion room fighting for my life and looking to my right or left, encouraging others that they can overcome. My weakness is my mind control, not allowing it to get the best of me.”
This, she said, is her fight, and it’s hard enough without having to reassure the people dearest to her.
“Chemo is hard, harder on friends and family,” Hall wrote. “Be strong for us so we don't have to comfort you in our time. Just come sit with me. If you want to support me, treat me as if I wasn't sick. Treat me like a regular person. The one I was prior to the diagnosis.”
Like Hall, Carla Van Ess, 46, lives in Tacoma. She’s not working, but she loves reading, her dog and cats and visiting with her friends.
“I found out I had cancer when I couldn’t get over a bout of bronchitis and cried a lot,” Van Ess wrote. “I was diagnosed in November with limited small cell lung cancer. I was so scared. I was devastated. I didn’t think I would see my two very young grandchildren again. I was told that at best I would live two years if I went through chemo and radiation, and if I didn’t do anything I had at best nine months. I didn’t know anything about my cancer, but got online and did a lot of reading.”
All that reading helped her make decisions on her treatment and anticipate what was coming at her, including nausea, fatigue and hair loss. She read about the costs, and the counseling some hospitals offer to try to manage them, but she did not have to face them.
“I have state medical, so the costs were not an issue,” Van Ess wrote.
She made her treatment decisions based on her Internet research and discussions with her doctors.
“I refused radiation therapy but did have chemo. I had treatments three days in a row followed by 18 days of nothing,” Van Ess wrote. “On chemo days, it was all I could do to make the long (20 feet or so) walk to the restroom. When I got there, I often needed to rest before going back to bed. The worst part was the nausea. I had to try three different meds until I got Kytril. It’s specifically for chemo.”
Van Ess, like so many cancer patients, is specific when she discusses treatment, and she’s not shy about sharing some of the indignities life-saving drugs force on bodies not accustomed to being frail. She is also pleased to report that she lost some, but not all, of her hair.
Like so many other patients, she has high praise for the people who pumped killer drugs into her.
“The staff at the Gig Harbor office of MultiCare, they were the best,” she wrote. And they were the best to the last detail. “Paratransit helped with getting me to my appointments, but when my ORCA card stopped working, I had a little trouble with getting a ride. The staff helped by giving gas cards to help.”
She relied on her family and friends, especially her best friend, a non-smoker who has survived breast and lung cancer. When she cried, they hugged her. When her attitude slipped, they told her how precious she is to them. They found cards with perfect messages for her, and they brought her small, goofy gifts. They had the good sense to zip it instead of saying the wrong thing.
“It really doesn’t help when people say ‘I’m sorry.’ I'm sorry, too, but there is nothing sorry can help,” Van Ess wrote. “I have to say I have a whole new respect for people with cancer. It hurts and it’s scary, but with your family, friends and mostly God, no matter what happens, you will not be alone through this nightmare.”
Three months into that nightmare, Van Ess got wonderful news: Her cancer is in remission.
Consider yourself invited to join our conversation on cancer.
I've made two lists of questions, one for people with cancer, and one for the people who are supporting them. If you would like to be featured in a story, please e-mail your responses to firstname.lastname@example.org. I'll edit and shape your words a bit, so don't worry about spelling or grammar. Please include a great picture of yourself
There's no time limit, no word limit. We just want to hear, and tell, your story.
I have/beat cancer
My name, age, where I live and contact information:
My family, job, interests, community involvement:
The kind of cancer I got, and how we are treating it:
What I thought and felt when I got my diagnosis:
What I told people about this cancer:
What I know, suspect or fear about this cancer.
My strengths/weak points:
What/whom I rely on:
Costs of treatment, and how we are handling that:
What works in the system, and what needs to be fixed:
The best ways to support me:
Nice things that people have done that don't help:
The stuff that's been hardest to do.
My thoughts on the questions you should have asked:
I'm a caregiver
My name, age, contact information and relationship to the person with cancer:
My family, job, interests, community involvement:
How I decided to be a caregiver:
What that demands of me are:
What this is teaching me:
What I have learned from/about this person I love:
What I have learned about the systems – from medical care to insurance to employers – involved in this.
What has made me angry, sad, frustrated, disheartened about this experience:
What I'm not sure I can handle:
What I am sure I can do/am doing for this dear person: