StoryCorps at SHC: Kelly Bugos and Jack Aiello
You have cancer, you want to deal with it, but you want to have as normal a life as possible.
Kelly Bugos (KB): I remember years ago, you sharing with some oncology nurses how important it was for you to know what hour you were going to get out of the hospital. Do you remember that?
Jack Aiello (JA): Well, yeah, I'm not a very good patient. I'll be the first to admit that. Even when I was in the hospital there, I would sometimes take my IV pole and I'd be missing from the hospital room, because I’d go out in the parking lot and walk around and the nurses weren't too happy with that. And I think the more educated you get, you want to learn that you don't want your cancer to run your life. You have cancer, you want to deal with it, but you want to have as normal a life as possible. And part of leaving that hospital was having as normal a life as possibl
KB: Yeah, so well said. And that's what we talk about in survivorship, right? Is about getting back to life, even if it means just between different chemotherapy cycles, or different treatments. What do you think were some keys in terms of just being able to take good care of yourself?
JA: Yeah. So for me, goal setting is kind of important. I'll take you back to when I was diagnosed, I set three goals. I was told that the average survival was only two and a half years. So I wanted to live five years. And I figured that'd be double what they predicted. That five years would also give me a chance to see my daughters graduate from high school. Then you get to a stage where, my golly, it looks like I'm going to live for a while with this. I'd gone through a lot of treatment, and the goals change. The goals for me became one of after seeing my son getting a music education degree, I wanted to see him conduct orchestras, or that my daughters I'd always told that I wanted to walk them down the aisle and bounce a grandkid on my lap, I had gotten a chance to do that. I bounced four grandkids on my lap.
I always remember, well, a myeloma patient once told me that having myeloma was like being a frog on a lily pad. At some point that lily pad is going to sink. So the frog's always looking one or two lily pads ahead. And a myeloma patient had to be like that, you always need to be looking one or two treatments ahead.
I keep feeling the fear of recurrence. I have that fear. And so, I always feel like I need to stay on top of what treatments are out there. So I'm an advocate, but that advocacy role allows me to keep on top of what new treatments are out there. So these days I facilitate a myeloma support group meeting. Here I was, the reluctant one to attend a support group, and now I facilitate. I'm also very much involved with being a research advocate. Education is really key and knowing what's available out there is important.
KB: And for survivorship, there's this phrase called seasons of survivorship. The first stage is the shock, right? You just hear the words and it's hard to hear anything after that. And then just going into a kind of a go mode of we're going to do everything we can to fight this disease and to be able to get over it. And then to start to reconcile the long term or late effects. And then the fourth stage is when people get to a point of recognizing they're not what they were, they're happy with what they are. And to be able to be in a place where they are able to gain some real wisdom from the experience they had and share it with others. And to me, your journey has exemplified all four of those stages.
JA: Yeah. Through the advocacy role, I've been able to share with others and help educate others. For me, I've had, if you will, a second life after cancer. Much different than my prior life, but it's something that I enjoy doing. I also recognize how fortunate, how lucky I am. I really appreciate the fact that I've now been married, coming up on 47 years, and the kids are all on their own and doing well. And I think that fourth phase that you identify is very real, and can be really, feel very good about.
KB: Be very rewarding.
JA: Yeah. Very rewarding.
Sound Editor: Gabriel Maisonnave
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