Kathy Giusti joined LUNGevity for a special conversation about her life as a cancer patient, caregiver, and the founder and former CEO of the Multiple Myeloma Research Foundation. Her involvement with the medical system from these different perspectives inspired her to write her recent book, Fatal to Fearless: 12 Steps to Beating Cancer in a Broken Medical System.
You can watch the full 40-minute conversation with Kathy or use the timestamps below to learn more about the topics and advice discussed.
Kathy’s advice to someone recently diagnosed with cancer – Starts at 1:00
Kathy begins by emphasizing that people need to understand their diagnosis. Take note of any words you don’t know and learn what they mean, learn about the exact type of cancer you have. Everyone with cancer is in a situation unique to them.
Even for those who don’t want to be involved in understanding the medical side of their treatment and instead leave it up to their doctor, Kathy talks about the importance of someone close to you doing that research. If it can’t be you, look for a son, daughter, spouse, or friend who can help in this specific area. The science is moving so fast that it’s crucial to have someone doing this research for your specific type of cancer.
How to know what’s important and what isn’t, when there’s so much information out there - Starts at 11:30
Kathy’s advice for the best place to start to make sure you get the right information is to be specific with your searches. When using Google, type in your form of cancer, the stage you are in, and your biomarker if you have one.
When it comes to the sources you can get information from, she says to focus on places specializing in what you have. While it can be helpful to use general cancer websites, like cancer.org (National Cancer Society) or cancer.gov (National Cancer Institute), you need to find the organizations that are focused on your type of cancer, whether it be lung, breast, or prostate.
Kathy’s decision to have a child while undergoing cancer treatment – Starts at 17:00
Kathy shares about the moment she was sitting on the floor of a bookstore journaling, thinking about her needs vs wants. She found that much of what she was writing about were her wants. Specifically, how sad she was that she wouldn’t be able to have another child and give her daughter a sibling.
Then Kathy thought, does it have to be this way? That moment started the planning that eventually led to the birth of her son, David. Having cancer doesn’t mean your “wants” aren’t important, because they are.
Having brutally honest conversations with your doctors, care team, and family - Starts at 22:20
Building off her decision to have another child, Kathy touches on the importance of having honest conversations with your care team.
Her advice for these conversations is to have them. Don’t shy away from them. And if you don’t get support from the people on your care team when you tell them something, it might be time to find a new doctor who will be supportive, because your wants are very important.
Kathy’s switch from being a patient to a caregiver for her sister – Starts at 34:15
After going through her own cancer journey, Kathy became a caregiver for her sister, who was diagnosed with breast cancer. During this time, she looked back on what she had needed help with, what she had asked others to help her with, and learned this very important concept: Tell people what you want.
Kathy points out that while you need to be honest and clear with your caregiver, you also need to be aware of just how much you are asking for. Resentment can build if you aren’t making sure to share how grateful you are for their help.
You can learn more about Kathy and her 12 Steps to Beating Cancer in a Broken Medical System in her recent book, Fatal to Fearless.
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