Melanoma survivor and Cancer Hope Network Support Volunteer Sam Lozier on why it's important for patients to become CEO's of their own health and remember that treatment is a partnership.
Diagnosed with ocular melanoma in 2005 and liver melanoma in 2013, Sam Lozier has been a CHN Support Volunteer since 2007. She remains a dedicated volunteer and a champion of patient rights. We recently caught up with her to discuss eight things she thinks all patients with cancer should know.
Get a second opinion. It may not be easy, but it’s absolutely necessary. There’s a bit of a power imbalance when you go to see your doctor. They are, after all, the expert in this new and terrifying disease. But patients must remember, as the soulful Kris Carr reminds us, that they are the “CEO” of their own health. It is your right, your responsibility to advocate for your own health. “If your doctor has a problem with you getting a second opinion, that’s a big red flag. A good doctor, who you want to care for you, will not only be ok with you getting a second opinion, they’ll want you to.”
“This isn’t like changing hair stylists and not wanting to hurt someone’s feelings. A second opinion could literally save your life. Which is more important? Possibly making your doctor uncomfortable or saving your life? Cancer is an intimidating world, but you must always remember that this is a partnership.”
Sleep on it. Some diagnoses require immediate treatment. But when you’re being offered multiple treatment plans and aren’t sure which path to take, take a deep breath or get a good night’s sleep and give yourself time to process. “When you’re actually in that moment, being told you have cancer, how can you process everything immediately? How can you make an informed choice? Be gentle and give yourself a little space.”
Bring someone with you to each appointment. You shouldn’t be the one to take notes. Your job as the patient is to make eye contact, to engage with the doctor, and try to stay in the moment as best as you possibly can. Having a family member, friend, or patient advocate at the appointment takes the pressure off of you. You can listen and begin processing, without trying to write down the correct spelling of the new drug they’re recommending. For Sam, that often means taking several members of Team Lozier to appointments: her mom who is especially terrific at taking notes, her dad who is great at research, and her husband who is gifted at “staying calm.”
Surround yourself with positivity. Cancer treatment can be exhausting at best. That’s why a team of cheerleaders and supporters is essential. But be selective about those who share your time and energy. “It’s always ok, even healthy, to think of yourself. If you’re not going to do it now, while fighting cancer, you’ll never do it. I’m very strategic in who is on my team. I choose to be surrounded by people who are supportive, loving, and caring. If there are people in your life that are stressing you out, aren’t supportive or are filling your space with things that scare you, it’s time to create some distance.”
Get bold. Say what you need to say, say what you’re thinking. It’s ok to put on a happy face sometimes, but it’s absolutely vital to be honest. Don’t be afraid to admit that you’re having a bad day, that you’re scared, or that you just need to fall apart for a bit. Don’t give into the pressure to keep up a brave front. “The more authentic we are, the deeper our connections can become. Since I was diagnosed with cancer, I’ve been so vulnerable with my friends and family. Our relationships have actually deepened.”
Find something to ground you. “I’ve never felt more off-balance in my life than when I’m going through cancer treatment or even scans. I don’t feel like myself, I can’t concentrate. I physically don’t feel well because I’m so anxious. For me, meditation has helped greatly. That’s not for everyone. My friend takes her kayak out to the lake in the early mornings to be alone. Whatever brings you peace, it’s important to find something that is yours and that nobody can take away from you, that can help you feel grounded in a world that is so chaotic.”
Don’t read things online. Or, know what information will be most helpful for you and manage the flow accordingly. For Sam, that means not googling her type of cancer and not focusing on statistics or survival rates. For others, that means reading the latest journal articles and following the progress of clinical trials. Never forget: your treatment is a partnership. You decide what type of relationship you want to have with your medical team and with the information that may be coming at you from other sources.
“When I was first diagnosed, I started signing up for every health and wellness newsletter, blog, and mailing. It was overwhelming. Over time, I’ve cut it down. For me, Kris Carr (read more here) serves as my health and wellness coach. She’s who I look to when I wonder if I can really thrive with this disease. I consider Gabby Bernstein my spiritual coach, as she teaches me about self love, boundaries, and forgiveness, all of which I believe ties in to leading a healthier and more joyful life.”
Have HOPE. Sometimes, this means finding healing, even if a cure isn’t in sight. “There are a lot of people who believe that the more you care about your mental and emotional health, the better your physical health can be. Getting rid of emotional toxins can help free you. There are going to be dark days. Don’t ever discount that. But there is hope.” Sometimes, hope means you can accept that this is where you are in your life. It doesn’t mean you’re giving up, it means you’re taking a deep breath and saying, ‘I’m not giving up — I’m accepting that I’m a woman with cancer. There’s no shame in that – this is who I am.’
Want more of Sam’s perspective? Visit her blog: You Can Handle the Truth https://youcanhandlethetruth.wordpress.com/