We interviewed patient and ALK Positive volunteer Dana Querido about her journey with ALK+ lung cancer and her active involvement with the ALKtALK Healing Arts, Death Cafe, and more.

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

I was a Physical Therapist for almost 30 years before I was diagnosed. I spent my whole life from the age of 14 to 51 taking care of others either as a volunteer or as a PT. Having to medically retire was a catch 22. I loved having the enormous stress of working gone but a large part of my identity was wrapped up in my job.

My lung cancer path started in November 2020. I noticed that I was getting a bit out of breath but thought it was from sitting on Zoom since all therapy moved to virtual for Covid. I had led a very active life, so sitting still was not me. I had carried a new 25 lb puppy up and down 4 flights of stairs at a hotel during home repair in August. Then I got a sharp pain in my ribs. After my third ER visit I was given a CT scan that showed areas with high chance of malignancy. I spent the next week in the hospital getting a biopsy and recovering from the collapsed lung caused by the biopsy. So I knew I had lung cancer but did not find out I had ALK until a month later. November is a bad month to be diagnosed with lung cancer as it is during Lung Cancer Awareness month and the statistics being broadcast are awful, but that is another issue I would try to address later in my cancer life. After a month of multiple thoracenteses to drain fluid gathering in my lung I started Alectinib. The fluid was gone within a month. I am still on first line Alectinib, although I dropped my dose after 3 years to try to help with side effects. Currently stable.

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?
Stay active. Don't let the side effects slow you down. It will be easier to pace yourself than to be sedentary and have to catch back up. Don't compare yourself to how others are doing, you are unique and doing your best. Don't deprive yourself of foods that make you happy, but remember everything in moderation as most of the medications cause weight gain. There is no special ALK cancer diet you need to follow but eating healthy will probably help you feel better. Plan the trips you want. Write yourself notes everyday, this is something I did not do. Show yourself that you have a 100% success rate of making it through a bad day and remind yourself of all the things you can still do. Learn about your cancer so you can ask questions at your oncology appointment. Ask about getting a palliative care doctor. This person will help you navigate and assist you with resources for physical, mental and emotional issues. Studies have shown that early access to palliative care improves outcomes. Make the most informed decisions you can.

3. You were one of the co-founders of The Death Cafe alongside the late Lara Vaz Pato (editor's note to readers: don't be fooled by the macabre name - this is a Zoom call where people discuss all aspects of life with ALK cancer in a safe, non-judgmental space!) and are very active in coordinating the ALKtALK Healing Arts program. Tell us a little about these programs/initiatives, what they offer to the patient and caregiver community, how they've grown over the years, and why people should be joining them? (editor's note: they are free of charge)
I feel everyone should join at least one of the Healing Arts offerings. I joined within days of hearing I was ALK-positive and it was the best thing I did. The Healing Arts Zooms were only a few months old, but I did not know this at the time. It let me know I was not alone. A sense of community helps you emotionally, mentally and physically. The people I have met there now feel like family. My attendance slowly became me wanting to help run the programs. Death Cafe is one of our highest attended sessions. It is hard to talk about the thoughts we have surrounding our mortality with family and friends due to fear or sadness. I once was talking with an oncologist originally from South America and he stated that he was so surprised how Americans feel death is optional. Sometimes we need to talk to others who understand to either validate our feelings or help us organize our thoughts. Each month I come up with a new topic. Last month was "what is a quality life?". Other months we talked about how cancer is portrayed in the media and how it can add to the stigma and misunderstanding which makes our daily lives harder. We had multiple events that educated us on hospice and the role of an end-of-life doula. Some topics are deeper and more thought provoking than others. For Death Cafe we break into small groups of 3-4 people, so the conversation is very intimate and personal, which really helps. We also have a therapist who moves between the rooms so if someone is having trouble processing, she can invite them into a private room to talk. Please see the calendar for all the wonderful offerings that have grown from 3-4 a week to so much more. Our meetings now include ALKChat, New ALKies (under 2 years since diagnosis), Young ALKies (under 50), two different yoga classes, Book Club, Art Therapy (no artistic talent needed), two writing groups, Coffee tALK on Saturday, which allows people from other time zones or those who are working during the week to attend, Care Partner check-in (our support people need a community for them also), Guided Imagery, Men's group, and Mindset Reset (great class that helps us change how we think so can LIVE with lung cancer). Other than Writing, you do not need to sign up for any of these. Show up whenever is right for you. Please see the monthly calendar and come get the support you want from people who truly understand all you are feeling. We are not a substitute for therapist counseling, nor do we provide medical advice. Things that come up in our meetings can be brought to those professionals though.

3. You are a very active volunteer within the ALK Positive, Inc. organization. What inspires you to give so much of your time and talent in volunteering, and has this given you a sense of purpose amidst your diagnosis?
I have found my grounding in volunteering. I first joined to help me feel connected and less scared, then stayed because I wanted to pay it forward to help those after me get the same experience. As I mentioned before, my whole life I was helping others and I missed the interaction. I have a good skill set to talk with those in the midst of medical issues. I have made true friends in the group. When I get to hug them at Summit it fills me with joy. I encourage everyone to volunteer if they feel they want to give back. I am sure we can find the right place to match your skills/interest to an area in the organization where you can make an impact.

4. You are a big fan of our ALK Summits and have been to every one in recent years. What do you love about our past Summits you've been to, and what are you most excited about our 2025 Summit in San Diego in July?
I love the in-person interaction of Summit. Learning from the Medical Committee and doctors is vital, but seeing my fellow ALKies and being able to speak in person is a highlight. I also enjoy interacting with the pharmaceutical representatives and helping them understand what it is like living each day while taking their medication. I love that we offer in-person, virtual viewing, and videos of the sessions uploaded on our Youtube page options. To see all the life being lived despite our diagnosis really helps me stay forward facing and keep PLANNING to be there for the next Summit, vacations and important events.

Interview by: Christina Weber

Patient Spotlight: Dana Querido, West Chester, Pennsylvania, USA