Patient Spotlight: Nikki Hirsch

Interview with Nikki Hirsch

Tell us a little about yourself – your personal and professional background, as well as your journey with ALK+ lung cancer so far. 

I am from New York and started my professional career in Marketing in NYC. At 40, I moved to South Florida to help my mom when she was diagnosed with colon cancer. I was blessed to spend a lot of time with her until two years ago when she passed. I was diagnosed with Stage IV Lung Cancer in the summer of 2021. I had gone through lung X-rays, blood tests, and was diagnosed with having allergies. It wasn’t until I was driving to work one day and had a spot in my eye impairing my vision that caused concern. One test led to another until it was determined that I had lung cancer. I had spent several years marketing oxygen concentrators on TV and had lots of experience with COPD but was just bewildered that as a non-smoker I could be diagnosed with this form of cancer. Today I dedicate my time to my friends, my nephew’s family, my dog and try to give back to the ALK community. Without it, I wouldn’t have been aware of so much information that affects my treatment. 

What do you know now that you wish you knew back when you were first diagnosed? What would be your advice to a newly diagnosed ALK patient?

I have learned so much since my diagnosis! Most of it was from listening to the ALKtALK seminars, reading Alkie posts, joining group meetings in Healing Arts, attending the Summit, and asking questions. I have learned what to expect on my journey with side effects and how to manage them, who the experts in the field are, and that I must advocate for myself. It can be a scary ride, but so much easier if you know when to expect the turns. It has also given me plenty of hope! My advice would be to live life and embrace it but also give yourself grace on the days that you just need rest. Refuel your body, pace yourself, and try to manage the scan anxiety. The Healing Arts programs are a good way to find support. 

You lead the Single ALKies sessions on our ALKtALK platform. What inspired you to get involved in this, and what made you want to facilitate this session?

While I was watching the ALK+ Summit, there was a family sharing a rally song they sing together to support their loved one. It was really beautiful – and at the same time it made me aware of how isolating this can be for those of us experiencing this alone. I put the idea of a Singles group on the chat and immediately got a response. I don’t even feel like I facilitate it so much anymore, it is more of just all of us coming together to check in and talk about whatever is on our minds. Being an ALK-positive patient is so unique, it really helps to share our feelings with other ALK friends who get it. If you know you know. 

Is volunteering with ALK Positive, Inc. helping you cope better with your diagnosis? What benefits have you experienced through volunteering and interacting with other ALK patients?

Volunteering has been extremely positive. Most of the credit goes to the leaders. Summer, Mark and Dana and all the (ALKtALK) program volunteers are so open to sharing and helping others. It is also hope through example. It is so inspiring! It is a family who has a shared understanding. You don’t have to explain yourself to receive support along the way. Volunteering also restores a sense of purpose and helps you feel empowered. 

How do you ground yourself and maintain a sense of hope and optimism despite this serious diagnosis? Is there any advice you would offer other ALK patients who may be struggling with the challenges of their diagnosis?

Hope for me isn’t about pretending this diagnosis isn’t serious but focusing on what I can control. Showing up for scans, staying connected to other ALKies, advocating for myself and for others. I stay informed about the advances in Cancer Research and targeted therapies, and this gives me real hope. In the meantime, I try to do what I love. I love dancing and traveling. I feel so much joy when I dance and at those moments I don’t feel like a cancer patient. 

My advice is to allow yourself to feel everything – fear, anger, grief – and without guilt. Just don’t live there. Find your people. Don’t isolate yourself. Stay informed, ask questions, and remember statistics are not destiny. Science is moving forward every day, and any day that you move forward, even in the smallest way, can be a successful day. Be gentle with yourself. This diagnosis is a lot, but it’s okay if some days look different than others. 

You have successfully run fundraising events to benefit ALK Positive, Inc. and have another one coming up. Can you tell us a little about what events you did/are planning? And what advice would you give to someone who would also like to fundraise for ALK Positive but may not know how to go about it?