We interviewed Amanda Bialack-Stewart about her unusual story with ALK+ lung cancer (having been diagnosed right after giving birth to twins at the age of 36), how she manages to balance family, work, fun, and self-care as a patient, and her active involvement in ALK Positive, Inc through creating and leading the Young ALKies Group.

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

My name is Amanda Bialack - Stewart. I was 36 when I was diagnosed with ALK+ stage 4 adenocarcinoma. I was 10 days’ postpartum from delivering my twin boys. My story is almost unbelievable. Had I not lived it myself I wouldn't think it was possible.

I met Chris, my now husband, in June 2021. In October of 2021 I had a breathing episode, for which I got a chest x-ray and a breathing test. It came back normal, and my primary care doctor said (I am quoting this) "We can do more testing if you want, but you are 35, in good health and there is probably nothing there". I let it go. In February 2022, I surprisingly (accidentally) got pregnant... with twins! A 1% chance of happening.

My pregnancy was miserable. I was nauseous every day for 4 months. Then developed a cough and had a hard time breathing if I ate. Every doctor visit I was told that my discomfort was because I was having twins. My high heart rate was because I was pregnant and having twins. My cough was because I was pregnant and having twins. My hard time breathing was because I was pregnant and having twins. Because breathing became so difficult after I ate, I ended up losing weight during my pregnancy. But I did not have the type of pregnancy complications that the doctors are looking for, which are high blood pressure or diabetes. I forced myself to continue to work out throughout my pregnancy. I swam & did Pilates until I was 8 months pregnant and went walking as often as I could force myself.

By trade, I have been a full-time realtor since 2010, so I kept working until I was about 7 months pregnant.

When I was 5 months pregnant I moved in with Chris, his son, Jack who was 10 at the time and my mother-in-law, Maria who was moving into the ADU to help us with the twins.

The cough didn't go away when I gave birth, but the combo of a c-section incision and that cough finally forced me to the ER when I was 5 days postpartum. That is where they did a chest x-ray and found a plural effusion. The pathology on that started coming back worse and worse and on October 27 I was diagnosed, a 0.1% chance of happening before 40.

My first oncology appointment was on Halloween. My oncologist was so confident that things would be okay and informed me of targeted treatment for genetic mutations. While I was waiting for my genetic testing, I found ALK +. I met Summer Farmen who became my 1st ALKie friend. I felt like I was living in a horror movie, and she understood me. My oncologist was thrilled to call me and tell me I was ALK + and that she was prescribing Alecensa. Summer and I rejoiced together in both being ALKies. I remember telling her that I wanted to do for others what she did for me in those first dark days. My oncologist has always been an optimist. The medicine has worked for me like she predicted. The healing from my pregnancy and the cancer happened simultaneously and today I am feeling like I did pre pregnancy, which I am grateful every day for. My side effects have been manageable and minimal.

My world flipped upside down. In an 18-month period I went from being a single girl, living in my bachelorette apartment with my yellow lab, Shlomo, to a fiancée and then wife. I went from being a dog mom to a mom of twin boys and a stepmom. I went from living alone to living with not just my husband but his mom and all our kids. I went from a healthy, half marathon runner to a cancer patient. It was a lot.

I never didn't work. I took off from August 2022 - January 2023, which I had planned for mostly because the 4th quarter is always slower, and I wasn't going to do much during that time anyways. In January I went back to work, and in 2023 closed a little under 13 million dollars' worth of production.

2. What do you know now that you wish you knew back when you were first diagnosed? What would you advise a newly diagnosed ALK patient?

The best advice I can give to someone newly diagnosed is that you just need to let the time pass to allow this to become a new normal. Stage 4 lung cancer before 40 is unbelievable. One day you wake up, and you have to make peace with the idea you've lived more life than you have ahead of you. For me, I can hope, wish and pray. Science very well could stay one step ahead of me. There is a lot of hope out there. The acceptance in me having very little control over what happens to me has been the hardest and the most freeing part.

In the first year I tried to do EVERYTHING. But I ran myself to the ground. I've heard so many of us do that. Finding the balance between "living for today" and "planning for the future" has been very difficult.

I don't think there is anything I wish I had known. Everyone who I talked to said that the first year is the hardest and it will settle into the new normal. For the most part that has been true.

3. You are not only an ALK patient, but also a mom of young children and a busy professional. How do you manage to keep a balance between the challenges of being a cancer patient on ongoing treatment and giving your all to your family and work? How do you maintain a positive outlook to keep you going and giving to your family and career?

Keeping the balance of it all is my ongoing struggle. Life is fun, hard and so busy. I truly love life. I feel so blessed to be having a good response to my current treatment. I enjoy my work and feel fortunate to continue working. I am in the process of getting my broker's license right now, so that I can start a property management company which I've wanted to do since before I got pregnant. I have an amazing circle of friends and community around me. I love my Wednesdays with my boys and getting to experience the world through their eyes. They are 20 months old now and are such a riot. They have their own personalities that shine through. James’ first word was "Mama" and even now, when my husband says, "Say Dada" he still responds with "Mama". Having a glass half full attitude is the only way I know how to be. Life is short, and no one knows when their card will be called, so I choose to enjoy as much of it as I can. I have a tremendous amount of help from my mother-in-law, sisters, and my parents. Everyone rallies together, so that my newlywed husband and I can still go on fun adventures together and experience life. If being busy, not knowing how to balance it all and having too much fun in my life are my biggest problems of the day, I will take it!!!

4. You are actively involved in ALK Positive - you lead the Young ALKies group on ALKtALK, and you're also helping with this year's Summit. What inspired you to volunteer with us and has this volunteer involvement helped you find a new purpose and cope better with your diagnosis?

Being a contributing member of ALK+ has been a goal since diagnosis. The support and understanding Summer provided for me was so meaningful to me. It was a gift I could never repay to her, but something I want to be able to provide to others.

I love leading Young ALKies because it gives us younger people a chance to talk about our issues. I am still working out the format which I am sure I will master right before I age out of being able to lead it (it's for patients 50 and younger).

I help to keep everyone in touch with the LA ALKies as well. We've gotten together a few times, have a WhatsApp group and are overall very supportive of one another. I think having the ability to reach out and see someone in person helps make living with ALK+ cancer much easier. Having someone know exactly how you feel is truly priceless. One of our group members is going on year 18 this year. His presence is SO inspiring and hopeful. One of our LA ALKies passed away last October, and it felt really sad to me. It was his death and listening to a song in the shower that pushed me to volunteer to do the ALK + Summit memorial video this year. I got a vision of how I wanted it to look, and the Committee agreed to let me. Being so involved in the ALK+ world can be really sad and depressing sometimes. It is also really supportive and informative. Like everything in life, there is some good and some bad and I choose to focus on the good and be proud to help in any way that I can!

Interview by: Christina Weber

Patient Spotlight Amanda Bialack-Stewart Los Angeles, California, USA