Patient Spotlight Ruby Blow, Atlanta, Georgia, USA

Please enjoy our interview with the wonderful and courageous Ruby Blow!

1) Share with us a little bit about yourself, including your personal life, your professional background, and your journey with lung cancer so far.

I am a sister, an aunt, and a professional counselor. I have my own practice. I stopped seeing therapy clients, but I earn an income by providing support to other counselors. I live in metro Atlanta. Until November 2021, I was taking care of my mother, who had Parkinson’s dementia. My mother was already advanced in her dementia when I was hospitalized at age 44 with a collapsed left lung. It was 3 months before I was diagnosed and began treatment for stage IV ALK-positive NSCLC. I’ve had a lot of support from my friends, my siblings, and my community. Sometimes I wake up still in disbelief about my diagnosis. Each day I practice acceptance of what is and cultivate hope for what can be.

2) When you were first diagnosed, what is it that you wish you knew? And along with that, what advice would you have for others that are newly diagnosed?

I think, when I was first diagnosed, I didn't know anything about the existing lung cancer community. I spent probably my first two and a half years of lung cancer treatment without much support from the actual lung cancer community, and so, I wish that I had known about at it sooner. But when I did find support, that support was through ALK Positive. That changed everything for me in terms of my outlook. It literally helped me recognize that it was important for me to have hope. I learned about the work that was being done. The researchers that were literally working on ALK-positive lung cancer treatments, and maybe even hopefully a cure. And that allowed me to have some hope for the future which I think is really important. It is so important to talk with other people who are going through the same thing.

Ruby, with fellow ALK friends Wendy Asher and Debbi Martinez, at the 2022 ALK Summit in Denver last month.

3) And what's your day-to-day life like right now? Are you doing any specific things to help yourself cope? Because this could be, you know, a really devastating diagnosis.

Well, you know, one of the things I've learned through being connected with other lung cancer patients is that it's different for everyone. My day-to-day life is very different than what it was before my cancer diagnosis. It kind of takes me longer to do everything.

Whether it's because of physical challenges or just the pain management and that sort of things. But I am also much more focused on what's most important. It's not muddled anymore. What's most important is what do I need to do today to take care of myself?

And so that's my priority. Sometimes other things fall by the wayside. Or, I have to tell people, “No.” I thought I was going to be able to do that, but I can't, or I've learned to not commit to as much.

I've also learned how to kind of rely on other people, to ask for help. I recently had my twin brother move in with me, and he's helping me a lot with just taking care of my household, and that allows me to focus on still having my business. He also drives me to treatments and keeps me company. So, that's been really good. So, my day-to-day life really consists of taking care of myself, whether it's my nutrition, making sure that I have a lot of water, etc.

My mindset, too, is something I have to really focus on. What am I telling myself? Am I telling myself that I have a future? Or am I telling myself, you know, woe is me, this is terrible, and I don't deserve this? That has never been my thought that I don't deserve this. No one deserves it, and I don't think I’m any better than anyone else. So that hasn't been my thought.

But I have sometimes worried about not having a long future. Because when I was diagnosed, I was told, you know, I might have six or seven years, and so that was very limiting for me.

But when I started getting involved in it, recognizing that with more research there will be more treatments and possibly a cure, I thought, "Oh, my goodness! I could be part of something that makes a big difference." And I think more people need to know that lung cancer doesn't get the amount of research funding that it requires to have the treatments we need.

I think it's because of the stigma of it being attached to smoking. But many people who get lung cancer have not smoked, and even people who smoke deserve to live.

4) You've done quite a bit of advocacy and fundraising for ALK Positive. So, what inspired you to get involved in the cause? And what would you advise someone who wants to get involved but they're not sure how?

Yeah, you know, what inspired me to get involved was going to my first ALK Positive Summit in 2021. It was online, and the second day of the conference there were some researchers that presented and talked about what they were doing, and I realized that ALK Positive had funded those researchers, a patient-led organization of people raising money and identifying researchers that just need funds to advance their work that could lead to a cure, to treatments that could extend my life and the life of other ALKies, as we call ourselves.

I was just blown away by that. I was nervous at first about fundraising, because, you know, it's a little bit uncomfortable asking people for money, especially during the pandemic and everything we've been through. A lot of people are struggling, and so I also knew there were a lot of people who wanted to support me but they didn't know how, because I've been private a lot about what I go through.

That privacy mostly has been, you know, probably not wanting people to feel sorry for me, which I think a lot of people go through. It's like you want to be treated the same. But you're not the same.

But I put it out there that it doesn't matter if it's five dollars, ten dollars, twenty dollars, twenty-five dollars, any amount that you donate will make a difference. And even the fact that at the end of the Summit what I fundraised was being doubled really allowed me to feel like, you know what,.. if people are uncomfortable, they'll just keep scrolling like I put it on Facebook. I asked a few people personally, and I think that first go around I was going to initially set my goal at $500, and then I said, well, let me put it at $1,000.

And then I kept raising my goal because people were giving and giving, and by the end I think I had raised $7,500 my first time. And that was within a period of a month and a half, and I was just pretty surprised by how much people actually wanted to give. But it's not really about the amount. It's about the effort, you know, doing something to make a difference for yourself and for other Alkies. So, just go for it. That's my advice.

Interview by: Christina Weber