Why are you telling your story?
I’ve always been a story-teller. My Mom loves to tell people that when I was about a year old and she’d take me to the grocery store, customers would be looking around trying to figure out who was talking, and it would be me! But more than just being a chatterbox, I genuinely get a great deal of fulfillment from helping others, and I have been a social worker now for over 10 years. This has given me the opportunity to interact with a lot of people, and my hope is that my life-changing experiences can give others some insight into how they want to live with greater health and happiness. My goal is to live an authentic, joyful, and healthy life, and I bet that’s yours, too.
What kind of cancer do you have?
Liver melanoma. On December 15th, 2005, I woke up to find that I had a bit of a dark spot in the corner of my left eye. I had never had any problems with my eyes before. I went to see my primary care doctor that day who sent me to an opthamalogist who thought that I had a detached retina (I did), who then sent me to see a retina specialist (who subsequently became my friend and was at my wedding), who took one look in my eye and told me that I had a very rare kind of cancer called ocular melanoma (eye cancer). I was 28 years old and living in NYC at the time. After multiple opinions, I decided that the best place for me to be was the Massachusetts Eye and Ear Infirmary in Boston (where my parents live and where I’m originally from). After a surgery to place metal rings around the tumor found in my eye, I then had a weeklong treatment known as proton beam therapy. Proton beam therapy is a course of radiation that is delivered by a huge machine called a cyclotron or synchrotron. My doctor has had scientific discoveries that include “developing therapies for ocular malignancies and retinal neovascular diseases that have saved the eyesight and lives of countless patients.” He has pioneered the use of proton beam irradiation therapy in the treatment of ocular melanoma, which has benefited more than 15,000 patients worldwide, including me. This type of radiation that I was lucky enough to have enabled me to have the therapy that thankfully spared most of the otherwise normal and healthy tissues surrounding the tumor in my eye. For the first 5 years after my treatment I was seen by my doctor every 6 months for check-ups including ultrasounds and pictures taken of the eye, but after 5 years, I was able to go to just yearly appointments. I lost a little bit of the peripheral vision in my left eye, but was very lucky that I did not lose any more that than. Because if ocular melanoma spreads it most likely goes to the liver, I have been followed since then with yearly scans of my liver/abdomen. In July of 2013 lesions were found in my liver, and after two biopsies (and one misdiagnosis), it was found that the ocular melanoma had spread.
(L) Receiving a dose of proton beam therapy at the Massachusetts Eye and Ear Infirmary in Boston at the age of 28. (R) Steve, me and Bob, two men that I met who were also having the same kind of treatment at the same time. Even though their appointments were right before mine, they would wait for me to be done and make sure that I was OK before leaving the treatment center for the day.
How long do you have to live?
I don’t know. The doctor’s don’t know. So please don’t ask. I take each day as it comes and remain optimistic.
Is your husband OK with you posting such personal information?
Thankfully, yes. He is incredibly supportive of my journey and loves the fact that I have this blog as an outlet for my creativity and my passion for helping others.
Are you involved in advocacy?
I’m currently in the process of trying to figure out not only how to help people learn how to advocate for themselves when dealing with a serious medical condition, but also how to help doctors in the medical community give more thought as to the power of their words. Research has shown that doctors that speak with their patients from a place of hope help their patients fight harder. If anybody has any information on organizations that are looking for guidance on these issues, please contact me.
Do you recommend any particular resources when dealing with cancer?
I have been a proud volunteer for the Cancer Hope Network since February of 2007. They are a wonderful non-profit organization that matches those diagnosed with cancer (as well as their family/caregivers) with trained volunteer cancer survivors who want to give back after their experiences. We speak to people over the phone, and provide emotional support. Over the years I have spoken with many people who have also been diagnosed with ocular melanoma. If you’d like to learn more, or to volunteer yourself if you are a cancer survivor, please contact them at: http://www.cancerhopenetwork.org/ or by calling their toll-free number at: (800) 552-4366.
What changes have you made in your life since being diagnosed, if any?
After my proton beam therapy, I just wanted to get back to my life as quickly as possible. I wanted to feel like I was a “normal” 28 year-old, dating, working, seeing my friends, and traveling. I became much more aware of the fragility of life, but basically, things did go back to normal. I struggled a little bit with whether or not to tell men that I was dating that I was a cancer survivor. I didn’t want to blurt it out on the first date, but it was also a big part of who I was, and I knew that I would always be followed with scans and appointments for the rest of my life. Other than dating though, I was still working full-time as a social worker for a non-profit organization in an elementary school in East Harlem (I had taken a week off for the eye surgery, and then a week off for the proton beam therapy). I hung out with my friends in the city, planned my best friend’s bachelorette party in Vegas, moved to Boston, traveled to Argentina, started two new jobs, and then met my husband. It really wasn’t until I was diagnosed with the liver melanoma that I quite honestly took a hard look at my life. I thought about what I could control. Unfortunately I wasn’t able to eat very well the first few months of my cancer (think plain chicken, rice, ginger-ale, and crackers) because of the immuno-therapy treatment that I was going through; I’m so grateful that I was able to receive this treatment, but it made me pretty sick (with an 8-day stint in the hospital). However when I started to feel better, I began incorporating more fruits and veggies into my diet. I started occasionally making green smoothies in the mornings, as a way to get in the 5-10 servings every day. Excited to be able to eat salad again, I tried new ways of enjoying leafy greens, often times with beans, nuts, and seeds (my favorite include pumpkin, flax, chia, and hemp). I began seeing a nutritionist at Dana Farber. After my second course of treatment (a surgery), I was sore and exhausted. My knees began hurting. My body had been through so much in the past year, it took a lot for me to even walk up the stairs. I decided to end my gym membership because it was just too tough to get there after work every night, and instead got an arc trainer in my basement (expensive, but one of the best things that I ever did!). I started off slowly, twice a week, for half an hour, regaining some strength. Soon I was up to 3 days a week, and now I try to work out 5 days a week. I saw an exercise physiologist and began some strength training as well. I’ve taken up private yoga classes and have an integrative doctor who has given me some suggestions on supplements that I can take to help keep my immune system strong and healthy. I cut most sugar out of my diet, stopped drinking soda, and try to reduce animal-protein as much as possible, though I will eat organic chicken and grass-fed beef. I’ve also been working on saying “no” more, creating boundaries, and reducing as much stress in my life as possible. This is tough for a people-pleaser, social worker, home owner, etc.! I haven’t mastered it, nor will I ever master it. I just try to be more mindful every day that things like unhealthy foods, lack of sleep, stress and negativity deplete me, and joy, fresh food, moving my body, laughing with my loved ones, and gratitude refuel me. I just bought a gratitude journal and can’t wait to fill it up with all of the wonderful things that I appreciate in my life. This has all been over the course of a year +, please know that it did not happen overnight, and it’s certainly not perfect every day! I still get depressed sometimes. I still have anxiety, and fear, doubt and anger. I still yell at people when they cut me off on the road or want to cry at work or can’t find the time to meditate. And the truth is (since we can handle it), that there are some days when I beat myself up for having a piece of cheese or a cup of coffee or a tuna sandwich instead of a salad. But I try to focus on just how far I’ve come over the last year, and the truth is (there it is again), I feel better. Healthier. Happier. Lighter. I love experimenting in the kitchen, pinning new recipes, and moving my body, whether it’s on the arc trainer, a long walk outside, or taking a yoga class. And taking up meditation has been amazing. I can never get my mind to completely settle down, but I always feel much better afterwards, and I’ve found that it’s helped me to create the space to work on some wonderful positive visualizations, mantras, and decrease anxiety. My favorites are Deepak Chopra’s (some for free!). Check out the Chopra Meditation Center here! https://chopracentermeditation.com/.
Where does your inspiration come from?
When you have cancer, you need inspiration. You need love, strength, prayers, support, spirituality, and meaning. Well let me rephrase: These are the things that I have found that I have needed. Everybody is different; everybody handles their own diagnosis differently, and people need to find what works for them. For me, I have my “Team Lozier.” My husband, my family, and my friends are all on my “team.” (So are my doctors, in their own special and very important way). My loved ones support me, listen to me, check in on me, laugh with me, cry with me, and they understand that some days I just need to be wherever I am in this whole crazy-cancer-world. The other biggest inspiration in my life is Kris Carr, who is living (oh who are we kidding, she’s THRIVING really!) with a stage IV cancer as well. I read her blog, get her email updates, check her Facebook page, follow her on Instagram, have devoured her books, and even have a framed picture of us together from when I met her at the I Can Do It Conference back in September of 2013, right after I had been diagnosed. She is a part of Team Lozier (whether she knows it or not!). When I have my “dark days” (as we all do), I think about her. She helps not just those with cancer, but anybody who wants to live a healthier and a happier life. Check her out here: www.kriscarr.com.
What advice do you have for me, newly diagnosed with cancer or some other serious medical condition?
While I’m not a doctor and can’t give any medical advice, I strongly encourage you to get second, third, and even fourth opinions. If I had never gotten a second opinion after my first liver biopsy, I wouldn’t have known that I was being misdiagnosed until months and months later, when they were going to scan me again! I trust my current doctor to the moon and back, but after deciding that I needed a second course of treatment this year, I got a second opinion. (And I would have gotten a third, too, had I felt like I needed it). I just felt that it was the smart thing to do; cover all my bases, and see if this doctor at another world-renowned hospital was going to recommend something different (he didn’t). Your doctor cares about you, but is not going to be angry that you’ve gotten multiple opinions, they expect it. Your health is in your own hands, and nobody else’s. Bring somebody that you trust with you to your appointments and have them bring a notebook and a pen (my Mom is my trusty side-kick whenever I go to the doctor). You may be in shock, overwhelmed, or upset, and not remember everything that the doctor says. Ask questions. Remember in school the good teachers would say “no question is ever a stupid question?” Well the same totally applies here. Sometimes doctors forget that we’re just regular Joe-Shmoe’s off of the street, and we don’t know what all of their medical jargon means! Start there. Take a deep breath. Enlist a family member, a friend, or the social worker or nurse where you’re being cared for to help you navigate the system. DO NOT READ ANYTHING ONLINE. I repeat: DO NOT GO ONLINE! I can tell you that putting in your diagnosis on Google and then “reading up on” will absolutely have no benefit for you. Instead, use the internet to email your peeps and tell them what’s going on, and what you need (if you don’t know what you need, that’s OK, too). Research your doctor and other medical professionals or treatment centers in the area, but don’t read “reviews” from people who go onto the internet to talk about their diagnosis (dangerous, and if I had listened to the internet when I found that dark spot in the corner of my eye, I would have self-diagnosed myself as having meningitis. You do not want to read something upsetting and/or something upsetting and possibly not true on the internet. Got it? Good). Check out cancer resources like The American Cancer Society www.cancer.org or the Cancer Hope Network www.cancerhopenetwork.org. Start your own page at Caring Bridge www.caringbridge.org if you feel like you want to keep your family and friends updated on your health, or have somebody update the page for you (only if this is going to take away the stress from having to update everybody individually. If you’re a very private person then you may not want to do this). Check out Kris Carr’s books: Crazy Sexy Cancer Tips, Crazy Sexy Cancer Survivor: More Rebellion and Fire for your Healing Journey, Crazy, Sexy, Diet: Eat Your Veggies, Ignite Your Spark, and Live Like You Mean It! And my newly purchsed Crazy, Sexy, Kitchen: 150 PLant-Empowered Recipes to Ignite a Mouthwatering Revolution. Journal. Cry. Meditate. Move your body. Listen to your gut. Talk to a therapist. See your friends. Believe in yourself. Do what feels right for you, and nobody else. Ask for help.
Have hope. xoxo.