Making the Cancer Conversation Easier, One Question at a Time
My mom was diagnosed with breast cancer last fall, and I felt what I can only imagine anyone feels when they get such news about a loved one: sadness, fear, an immediate and determined resolve to be as positive as possible, and—here's a big one—confusion. I had lots of questions, and they went beyond the medical details about her treatment plan and prognosis. How was my mom actually feeling? Was she scared? (And was it OK to ask her that?) How could I, living 1,000 miles away, be as supportive and helpful as possible?
My mom, of course, had questions of her own.
Jen Kraemer-Smith and Andrea Delbanco (pictured here) know about cancer questions firsthand—Jen was diagnosed with breast cancer several years ago; Andrea is part of her support network—and together they're helping people answer them. The two moms created The Cancer Conversation, a boxed set of cards designed to help cancer patients and their support systems "communicate, prepare, and plan." The main set of 40 cards, intended for those who have been diagnosed with cancer, deals with Common Concerns, Emotional Elements, Potential Pitfalls, and Practical Planning. Six supplemental sets of 10 cards each focus on specific areas, like Advanced-Stage Planning, Fertility & Sexuality, and Parenting; three additional sets are intended for caregivers, couples, and friends.
I had the chance recently to ask Kraemer-Smith more about her experience, her advice, and why we need The Cancer Conversation.
EJ: Can you talk about your own cancer diagnosis, and how that spurred the idea for these cards?
JKS: I was early in my pregnancy with my third child when I found a lump. I called my OB to say I knew it was too early for a visit, but I was concerned. She assured me that breast tissue changes during pregnancy, but scheduled a sonogram anyway.
I met with an especially cold breast surgeon near my home in New Jersey. She said she knew by the sonograms that it was breast cancer, but sent me for a biopsy. Once it was confirmed that I had stage 1 breast cancer, she flipped over a generic photocopied handout and robotically sketched out my options. My husband and I were so overwhelmed, we left without asking any questions and sat on the car in the parking lot and cried. We had no idea how to even begin to cope.
Thankfully, I found new doctors at Columbia Presbyterian in New York who had dealt with pregnant cancer patients before. My new doctors were warm and offered their time, but a lot of what I was going through was not medical but more about coping. Also, I was often so nervous at appointments that it would be difficult to ask questions or I would get this buzzing in my ears and not absorb what they'd say.
The idea for the product was a joint one with my friend, Andrea Delbanco. She's the type of friend who's always there for you. She came to New York to visit me in the hospital with muffins and homemade cards from her daughters.
My cancer experience showed me how difficult it is to learn how to cope with this disease. Hers had been not knowing how to help me. To answer both of our needs, we had this idea to write down all the questions I learned to ask and some short answers to help a patient start thinking about how to move forward.
EJ: How did the product actually come into existence, and did the questions come solely from your own needs and experience?
JKS: We came up with the idea in June and hit the ground running. In our everyday lives, Andrea and I work on a weekly magazine together, so we're used to a face pace. The questions are from my own experiences, but the answers combine my experience and Andrea's research and reporting. Once we had a prototype, my oncologist graciously shared it with other medical professionals and patients for feedback.
We launched a Kickstarter campaign and reached our $25,000 goal with 225 backers within a month. By January, we had our cards printed and our website built.
EJ: My mom said the books she was given after her diagnosis were too overwhelming to read. She appreciated the way The Cancer Conversation presents information. Was that a conscious part of the product's concept and design?
JKS: This was definitely the thought behind the design. When you're feeling unwell or just sitting with a loved one, we thought it would be so easy to go through the cards at your own pace and pick out the ones that apply to you. They're information in small bites that can be easily read and re-read gradually and also shared with those in your support system.
EJ: Is there a particular card, or set of cards, that resonates with you more than others?
JKS: One card says, 'Why are people so nosy?' It's a situation I didn't realize I had to be prepared for. You'll come in contact with people who know no boundaries. I had one individual who would relentlessly ask me details about my treatment I was unwilling to share. Just having a prepared response is a great idea. Mine was always, 'I've already told you what I'm comfortable sharing. Please respect that.'
'Who should I turn to at 3 am?' Insomnia came with my diagnosis. I would watch television at 4 a.m. trying to battle thoughts that raced through my mind. We suggest having a friend who agrees in advance to field your texts or calls during the night. I wish I had thought to do that sooner.
The 'parenting' set is something I wished I had had. I have three small children under the age of eight and I had a lot of anxiety about how to deal with this disease while trying to keep their lives normal. I still do.
EJ: What advice would you give someone who has cancer, or has a friend with cancer? Is there a best/worst thing you can do?
JKS: The worst thing you can do is cut yourself off. It's important to have some support system outside your immediate family. I was incredibly private when I was first diagnosed. I thought it would all be in the rearview mirror one day and I wouldn't have to tell anyone until my children were old enough that it was important to know for their medical history. Our family, our closest friends, and some friends at work all knew, and were helpful and caring. But I refused to let it go much beyond them. But by imposing this need for privacy, I may have taken away the opportunity for my husband to lean on more supporters.
The best thing you can do is allow yourself time for healing. I'm very 'type A' and walked through all the chemo and radiation largely in denial. I worked full time and tried to keep my life exactly the same. I found it difficult to take pain medicine because I had this odd sense [that] I shouldn't need it.
If you're able, slow your pace and take on less. Give your body a chance to heal. And know that your doctors are giving you medicines to deal with side effects of your treatment to make you feel more comfortable.
If you have a loved one with cancer, instead of asking, 'What can I do?,' ask, 'Can I take you to chemo on Friday?' Or 'Which night can I bring dinner over?' Or 'can I pick up your son from the bus stop?' It's much easier to accept help that's offered with a 'yes' or 'no' option. Since we've created The Cancer Conversation, I've heard from so many people that they just don't know what to do for or say to someone with cancer because they're afraid they're intruding in someone's personal business. Even though I was incredibly private about my struggle, I never felt like an offer of help was an intrusion.
Last, there is strength in helping others. Creating The Cancer Conversation has been empowering. It's an incredible feeling to know my experiences can help others. My cancer returned in 2014, and I live every day striving to keep life normal for my three beautiful children. I appreciate each day seeing the world through their eyes. We will be donating a portion of the profits to cancer research. I'm proud of The Cancer Conversation. It's my legacy. I hope that one day my children will know that their mommy tried to help others.
Erika Janes is the Digital Director of parents.com and the mom of two boys.