What would you find if you met Jody in person? I was recently lucky enough to have that pleasure. We actually first talked on a little putting green in Arizona. My first impression of her was of a real Texas dynamo in a tiny package. Fit, funny, and even feisty when it comes to cancer, Jody's warm personality comes shining through every step of the way. Her ready laugh and her obvious delight when making a decent putt put her in the category of social powerhouse. But it's her work with cancer survivors that best defines her.
When I approached her about doing an interview for my cancer blog, I had enough good sense to ask her to be straight with me. I wanted to provide the information that she felt was most important for cancer families. The great thing about Jody is that if you throw her the ball, she's more than capable of making a winning shot. I thought I would focus on ways to help men understand the issues in having a wife or girlfriend with cancer. Jody wisely pointed out that not every woman has a man to hold her hand every step of the way:
"There are a few things to consider. Not all women with breast cancer are married or in a committed relationship; so the questions need to better reflect the audience. There's a large percentage of single parents and and/or divorced single women who also are navigating cancer."
That answer is one of the reasons I felt comfortable posing questions to Jody. She speaks from the heart and the head. She's always looking for new ways to reach out to women with cancer.
If you were to go to Jody's blog, you'd find she covers related topics ranging from a very poignant letter from a breast cancer patient grappling with the effects of her treatment on her marriage to the latest news on the National Comprehensive Cancer Network Survivorship Guidelines to the effects of chemo brain on the mind and ways to improve cognition. She also has a great list of other cancer blogs that will increase your ability to find information and inspiration about cancer. Resources are so critical when you're feeling overwhelmed about cancer.
Jody's professional background is impressive. If anyone is capable of creating an online cancer community to support, empower, and motivate women with cancer, it's she. With more than 25 years of experience in public relations and communications in health care, science and education, she brings a lot to the table. Diagnosed with a locally advanced breast cancer in l998, she pushed herself to survive and thrive, and now she offers women sage advice and information. I could list all of her impressive credentials, but the truth is that what she says stands on its own.
One thing I do want to mention, however, is that Jody is one of the founders of #BCSM, breast cancer social media. The virtual meetings take place on Twitter every Monday evening at 8 pm CDT.
bcsmcommunity.org.
(Alicia Staley and Dr. Deanna J. Attai are the other two brains behind this social media chat fest. I also met Alicia, a three-time cancer survivor, and I'm hoping to interview her at a later date.)
Sara: If you were to address the caretaker of a newly diagnosed woman, what are the most important things would you want him or her to know about breast cancer and its treatment?
Jody: From the point of diagnosis, both the caretaker and patient are in new territory and changing roles. There's no doubt that cancer stresses a relationship. So first, process the shock and your own feelings as honestly as you can. Then it's important to determine your strengths as a caretaker. Think about how you can best support the woman you love. Be honest with yourself and with her. As she has a treatment plan, and medical appointments begin to fill your calendar, think about your own plan to take care of yourself. Breast cancer treatment can go on for up to a year or longer. Your own efforts to maintain "islands of free time," for exercise, a round of golf or other enjoyable activities are incredibly important. Many of us go into Super Hero mode when a loved one is diagnosed. That's all right for a short period of time but not workable for the long term.
Sara: As someone who was a caregiver for a lung cancer patient, I can attest to that as being great advice. I think we really do have to face our own feelings as honestly as possible and to process them, so they make sense. A number of caregivers charge forward into the role without really understanding how complex it really is. If you don't know what you can give, you can't really find other members of the caregiver team to fill in the blanks. And you're also right on the mark about Super Hero mode. This is a marathon, not a sprint, and we have to be prepared to go the distance.
What steps would you advise newly-diagnosed women to take to help them prepare for what lies ahead?
Jody: The first thing is how essential it is to learn about cancer, what the recommended course of treatment is and the range of side effects that might be anticipated. There are many different forms of breast cancer. Most don't realize how complicated breast cancer is and that treatment may involve only surgery, or surgery plus chemotherapy, radiation and/or hormone therapy in various combinations. It's a lot to take in at one time. But you don't want to look back either, and realize that you could have made a better decision about treatment. You have time to think, learn, and talk with other survivors. There's only a small subset of breast cancers immediate action is necessary.
The next thing to do is organize for illness, as I call it. I immediately got a large binder to hold information and medical reports. Then a friend created an email list to keep coworkers informed. Others find starting a blog is helpful. The key is that you reorder your priorities so that taking care of your cancer is at the top of the list.
Sara: One thing I learned from speaking to breast cancer patients is that treatment really is complicated when compared with other types of cancer. It all depends on what type of breast cancer a woman has. Some are more aggressive than others. And this is a disease that often is affected by hormones. It's also a very intimate kind of cancer, which can change our perceptions of ourselves as women and sexual beings. Your point about rushing into treatment without understanding the big picture is well-made. If women aren't at immediate risk, it makes sense to delve into all the information and weigh it before choosing the right course of action.
I've heard a lot of women say that "men just aren't there" for them during cancer treatment, or fall short in terms of offering the right kind of support. Are there ways for women to close the gap on what husbands and boyfriends can't do for them? Would a "cancer mentor" or "cancer buddy" make a difference?
Jody: This question is problematic in a sense. It's not realistic to expect any partner to meet all of our needs even when we are well. Women learn from and lean on their friends all the time. This is the same in cancer. Finding other survivors is key. They can make good suggestions and provide reassurance that your family can't. There's nothing like walking along with someone who has literally worn the same shoes. Today with interactive platforms like Facebook and Twitter it's easy to connect with other breast cancer survivors.
Sara: That's true. With all of the complex realities of cancer, it really does help to speak to other women who have "been there, done that, and got the cancer tee shirt". I've had other cancer survivors tell me that their families just "didn't get it" when it came to the right support. Being able to reach out to experienced cancer survivors is very helpful. I've found that very few people who have gone through treatment are unwilling to share insights and offer solid advice. It really can demystify the process.
Women are so often the caregivers in the family, yet during cancer treatment they need their own nurturing. Are there strategies to help them get their own needs met and lose the guilt over what they can't do for other people?
Jody: This is often the hardest for a woman if there are still children at home. At the same time, I've seen many families navigate this successfully. The shared characteristics were a sense of teamwork and excellent communication. So there aren't any strategies per se, but a shared realization that getting through treatment is something that is tough and can be managed. It's important for everyone involved to maintain a sense of daily life and order. And the funny thing about cancer treatment is that you aren't sick all the time. There are good days and bad days. Once you learn how to best care for the low points following a chemo treatment many things fall in place. It's also important to distinguish doing from being. You certainly can still love and be with your loved ones, that doesn't change. But if a woman's sense of self is tied up in everything she "does" for others then family will need to reorder its expectations. All of this is about facing change.
Sara: Maintaining a sense of daily life and order is all about imposing structure in the face of the chaos of cancer. Sometimes people surrender to the impact of the disease and that begins to drive the day. By taking charge of home life and making it as normal as possible, families are able to remind themselves of what is still "normal", so cancer isn't in charge.
I also like your point that you can learn to navigate through the low points of chemo. It helps to recognize the patterns of side effects and when they will pop up, so that you can make the most of the days when you are likely to feel good.
You make a valid argument that the whole family may have to "reorder" its expectations of a woman with cancer. We women sometimes take on the "doer" role and find it hard to surrender that because we get so caught up in "the rules" about who and what we should be. That can be a trap for many women, but it also sounds like families can get past that by letting go of those expectations and working to help a woman get through cancer treatment. What's the most important thing cancer taught you about life and love?
Jody: Cancer reorders your priorities. There's no doubt about this. Nothing gets your attention faster than a potentially life-threatening condition. What I've seen is that the majority of women discover how strong they truly are. Early on, a lovely woman passed this on to me, "If you didn't know how much you were loved before, just hang on. You're about to find out."
Those words have never left me. What a gift.
Sara: Truer words were never spoken, Jody. When cancer strikes a family member, it's a chance to realize what matters most in life. We can let go of the petty nonsense and focus on using what we have to make a difference in this world. It's hard to squander our lives when we know how precious time is, love is. Thank you so much for allowing me the opportunity to pose these questions. I hope women take heart from your words of wisdom and seek the support they need.
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