Interview with Laura Reed
Tell us a little about yourself – your personal and professional background, as well as your journey with ALK+ lung cancer so far.
I’m originally from Texas but moved to the east coast after I graduated from Texas A&M University. I took a commission in the US Navy and served as a Nuclear Surface Warfare Officer. After serving my time I moved to Charleston, South Carolina. In 2018 I started my own hand-made jewelry business, Margerite & Motte, and now I am in the process of starting a new business in Camden, a mahjong parlor.
I was diagnosed in May of 2023, and my life is vastly different than what it was at the time. The diagnosis changed how I viewed my life and the world. I started my first TKI, Alectinib, and didn’t tolerate the side effects very well. I also suffered mental side effects but didn’t realize it at the time. I ended a 7-year relationship and decided to live on my own. On the second TKI (clinical trial) I decided to move to a different city and completely start over, basically ending my jewelry business work and not knowing what I’d be doing. The 3rd TKI (Lorlatinib) had known mental side effects, so I was on the lookout this time. I was, and am still on, a mental rollercoaster that I’d like to think I overall “win” at, but it is an immense struggle. But even knowing the mental side effects, I still decided to put all of my savings into starting a new business. Hopefully it turns out alright, but three huge changes, three separate TKIs.
I’m 3 years post diagnosis, but I’m still trying to find that new normal. I wouldn’t know what I would do if I didn’t have the ALK+ community (and immense knowledge) to lean on for support.
What do you know now that you wish you knew when you were first diagnosed? What advice would you give a newly diagnosed ALK patient?
I wish I knew that I would experience intense emotions and not to “believe” the intense feelings I was experiencing and that it was the medication causing all of this. The only advice I can give is to find support wherever you can. Hopefully you have family because that’s what you finally realize matters most. If you don’t, there is a wonderful community of support with ALK Positive. Your mind can be your enemy, but it can also be your greatest asset. I was determined to live on my terms and the way I wanted it to be. You have complete control over how you want to live your life, but you have to commit to it and make small steps every day to accomplish your vision. I have learned that it’s just my mind/emotions playing tricks on me. I have to look at the facts and understand that the tough times will pass. Not everything lasts forever and bad days are included. Whenever I have a big reaction to a small thing, I have to remember it’s not me having the big feelings; it’s the medicine making everything more intense. Sit with it, feel it, let it pass, and enjoy the sane moments when I’m there.
What helps you or inspires you to keep going and stay hopeful despite such a difficult diagnosis?
Learning about all the research that is constantly happening. ALKtAlks discussing the latest and greatest developments. It’s inspiring to know there are so many brilliant minds trying to keep me and others like me alive.
You are a legacy donor for ALK Positive, Inc. (editor’s note: Laura has included ALK Positive, Inc. in her will) and you are also actively fundraising for the organization. During LCAM, you donated a part of the proceeds of your store (Margerite & Motte) to ALK Positive. What has inspired you to donate and fundraise for the organization, and what advice or tips would you give anyone who would like to fundraise as well?
Funding research is the only way we will reach a cure, or at the very least, live longer and/or better. I’m never satisfied with the current outcome, especially if it includes death at an early age. If there is something I can do to improve my life and the lives of others like mine, by golly I’m going to do it! And in that same breath, I don’t have to do everything all at once:) Any little bit helps. I just threw a random Facebook fundraiser for my birthday month for a few hundred dollars, if I remember correctly, and the goal was achieved and succeeded! Some fundraisers I’ve done, people I’d never met donated. All I have to say is, you never know unless you try. You don’t have to raise thousands of
dollars every year to make a difference. Just think, if more people raised a little bit of money, we’d have a whole lot more.
What excites you the most about the future of ALK cancer research and future treatment options? Since you are yourself a donor and a fundraiser, how would you ideally like to see your funds utilized for the future of ALK cancer?
Continue the research. As a participant in a clinical trial, I also saw a bit about how trials are conducted. I have trust in the managers that they are good stewards of funds raised. I trust ALK Positive to make the right decisions on how best to utilize the money raised. I believe in the goodness of people, and there is a lot of good in the people working hard to improve and lengthen the lives of ALKies. ALK Positive doesn’t have to explain all of this to us, but I’m so grateful they do. It’s a lot of work to coordinate, organize, and disseminate everything that they have done. We really are so lucky, if diagnosed with lung cancer, to have such great minds and researchers taking such good care of us.
Interview by Christina Weber
