Danielle (she/her) is an attorney, theatre artist, cancer patient advocate, and healthcare social media nerd. Most importantly, she is the primary caregiver for her parents. Danielle’s mother was diagnosed with Stage IV non-small-cell lung cancer in 2015. Danielle is a full-time advocate for her mother, as well as for her father, who has several chronic illnesses. Danielle serves as a Social Media Ambassador, support group co-moderator, caregiver mentor, event committee member, and blogger for LUNGevity. Danielle is the Legal Fellow for Triage Cancer, a national, nonprofit organization that provides education on the practical and legal issues that may impact individuals after a cancer diagnosis. She is also the Social Media Coordinator for Upstage Lung Cancer. She has served on several panels and advisory boards on caregiving and patient advocacy issues for many constituents, including nonprofits, research institutions, and the pharmaceutical industry. Danielle is married to Jonah, an attorney, and is the "mom" of five rescue cats.
What are some of the challenges for you as a caregiver?
I believe the most difficult tasks I've faced as a caregiver involve time management and attitude management. When someone you love deeply is going through something terrifying and catastrophic, it will obviously terrify and stress you as well, but it is important to remember that one of the most useful services you can provide your person is emotional support. Many times, that will mean putting your loved one's emotional needs ahead of your own, even when you are at your most frightened. Because of that, it's crucial for caregivers to have a place to vent and/or receive therapy that is safely away from the emotional experience of the patient, so that the patient is not unduly stressed by having to manage their own fear and the fear of their caregiver. And, as for time management, being a caregiver means constantly being in a state of flux between your priorities and your loved one's priorities. Two necessities to keep in a caregiver's toolbox: flexibility, and a sense of humor around letting go of schedules or routines.
Have you had to deal with stigmas or misconceptions associated with lung cancer? If so, how have you dealt with that?
I am sure that most people who have lung cancer or have a loved one with lung cancer have dealt with stigma. The first question most people ask when they hear about the diagnosis is always about smoking: "Did you? Have you stopped?" Etc. It is easy to be angered by this, but it's important to remember that this response means that anti-tobacco campaigns have been deeply ingrained in people, so I think the best response is a kindly redirection toward a different message: "Actually, did you know that lung cancer and smoking don't always correlate?" Then go from there. People are much more willing to learn and listen when you are gentle than when you react with irritation, especially in an advocacy setting, because you are not arguing with the person: you're arguing with outdated advocacy.
When someone asks you about your experience with lung cancer, what do you want to tell them?
I really want people to be sensitive to how they interact with all cancer patients in terms of treating the patient and their family like there is either death or healing and nothing in between. My mom and I often say that it's sad how people facing severe illness are either seen by society as newsworthy because they were cured, or newsworthy because they have died, and then they are ignored in any other circumstance. Most of a cancer patient's time (or a chronic illness patient's time) is spent trying to have as normal a day as possible, every day, given the individual circumstances, and that is often exhausting. However, that isn't glamorous or interesting from the outside looking in, so the patient and their caregiver gets ignored and forgotten for long stretches of time. There shouldn't be a burden to be "newsworthy" just to be cared about or helped. I challenge anybody who is not a cancer/chronic illness patient or caregiver to reach out to someone today who is, and ask what they need, especially if you haven't reached out in a long time.
If you could give any advice or words of wisdom to a new caregiver, what would it be?
Pace yourself. This is much more like a marathon than a sprint. Regardless of your loved one's prognosis, more will be asked of you for a longer duration than you have probably ever given before. You are going to feel overwhelmed by your to-do list, and that feeling is normal. Embrace it and be practical. Your loved one will appreciate quality time spent with you much more than completing any individual item on the to-do list, and when you absolutely must get around to that list, be sure to have honest discussions with your loved one about what is important to spend time on, and what isn't, because absolutely no human being can do it all. I'm over five years into being a full-time caregiver and I still mess up when it comes to guessing what is needed from me and what can wait. The better a sense you have on what your loved one really needs or wants, the more you can relax, because you won't constantly think that everything on the to-do list is of equal importance.
If you had the opportunity to speak to the nation about lung cancer, what would you say?
People need to know that the treatment landscape is changing for the better. There are more approved therapies for lung cancer now than ever before, and more in the past few years than in the preceding fifty. Also, people need to know that patients are now in the vanguard of designing medical research based on their own needs and goals. The veil between patients and those in charge of setting clinical and research priorities is the thinnest it has ever been, and people deserve to ask their healthcare teams to be included in these conversations and initiatives.
Don't navigate lung cancer caregiving alone. Check out our Caregiver Resource Center for tips, tools, and support.
Share your caregiving perspective! In September 2020, LUNGevity launched Project PEER with the overarching goal to understand the lung cancer patient experience, irrespective of diagnosis (stage/history), outside of the clinical trial setting. In addition to this, the survey is also designed to learn about your experience as a caregiver as well as learning about your person’s lung cancer diagnosis and treatment trajectory. We at LUNGevity want to hear your voice! Through research like this, we can advocate for policy and funding changes to help support those providing critical care to their person with lung cancer. We invite you to share your perspective by participating in Project PEER. Learn more.
LUNGevity Spotlight is a way to highlight people living with lung cancer, caregivers, volunteers, and fundraisers who are making a positive impact in the LUNGevity community. We hope that their stories will inspire and encourage many more to get involved.
If you know someone in the LUNGevity community whom you'd like us to Spotlight, please nominate them here.