Lightly edited from the Kaiser Permanente AYA Cancer Summit 2021. This is a transcript of twin sisters Sara & Ali’s cancer journey as a patient & caregiver duo.
Sara
My name is Sara and this is my sister, Alison. Thank you to Kaiser Permanente and Stupid Cancer for asking us to speak today. We are identical twins from San Jose. In 2015 at the age of 24, Ali was diagnosed with brain cancer.
We may be twins, but we couldn’t be any more different. I’m loud, outgoing, energetic, and very talkative. Ali is shy, reserved, and she would never want to do anything like this on her own, hence why I’m giving this introduction. As much as I would prefer to be sharing our story in person, Ali is much happier over Zoom.
We were mostly raised by our single dad and older brother. We had a very active childhood our whole lives. I’ve been very sensitive, and I wear my emotions on my sleeve. Ali was always the tough one, my protector. Going through life with my built-in best friend was the best thing ever. We did everything together. When Ali got sick, our dynamic was completely flipped upside-down. I became her caregiver, her protector. It was a difficult thing for the both of us to handle.
Ali, do you want to tell everyone about your diagnosis and what that was like for you?
Ali
I was diagnosed with brain cancer in 2016, and obviously we’re still really emotional about it. I won’t get into all the details because I’m sure everyone here can relate in some way, but there were a lot of tests, a lot of misdiagnoses, needle pricks, scans, and all the things that go with finding out what’s wrong with you. They found my brain tumor in October. I had it removed. Then, I started some fertility preserving treatments and a really intense regimen of chemo and radiation for seven weeks, followed by another seven months of chemo.
In November of 2016, 11 months after my initial diagnosis, I was declared NED, which means no evidence of disease. To be totally honest, most of that time is such a blur. But I think I prefer that because it was really traumatic. I was exhausted all the time and terrified, just terrified all the time, that maybe it was going to kill me at any point.
Do you remember when the doctor said I might not see our 30th birthday?
Sara
Yes, definitely. There are things about that time that I remember perfectly, and other things that are completely a blur. From my perspective, I remember being shocked. Absolutely shocked and devastated that I might lose you, my built-in best friend for life. I was also terrified , emotional, and not sure how to handle it and how to be there for you. We didn’t have a history of cancer on either side of our family as far back as we could go. And we only knew one person who had ever had cancer. So, it was something that you just don’t think is going to happen to you or to someone close to you. Especially at such a young age, only 24.
Our lives were just getting started, you know? How do you think that impacted our relationship?
Ali
Well, I mean, just like you said… it shifted everything completely. I was always the one that protected you and was worried about you. And then all of a sudden, I couldn’t even protect myself from possibly losing my life and you had to start doing things for me. And I don’t like when people do things for me. I’m stubborn, and it was like pulling teeth.
Do you remember how we resolved our argument about my treatments?
Sara
Well, as I’ve mentioned, Ali is the dominant one in our relationship, which mostly means that I don’t make the plans. I followed the plans and I’ve been doing that for 30 years. So when Ali had to go to her radiation appointments, I was now her caregiver. I was making all these plans to figure out how I was going to drive her and get her there. She went to radiation for 35 days. I went 33 times and I drove her one time. She let me drive her one time to radiation. One time!
Ali
I might as well have been kicking and screaming, I was so mad about it.
Sara
And at the time, I remember being so frustrated with you. Like, dude, just let me drive you! I’m here, I’m available, I want to take care of you, I want to drive you. And I understand now that that was one of the only things in your control like you only had control over being able to drive yourself to radiation. So that’s what you were going to do. If you could still do it, then you were going to and I was just going to have to be happy about that. And I was not happy about it. But looking back now, I mean, I didn’t have a lot in my control, either. But it was more important that you had that in your control.
What do you think got you through that first year?
Ali
You and my boyfriend at the time, who’s now my wonderful husband. I had to lean on you guys a lot because I felt really isolated in all of my social circle, because all of my friends were in their early 20s. And they were having problems with dating and work… and I thought I was gonna die, so I felt really isolated at times. But you and Ryan, like, really got me through that time.
And then we found Stupid Cancer. And that just completely changed our lives in a way that I don’t think either one of us really knew at the time. Do you remember when I called you about Stupid Cancer?
Sara
Yes, yes. 100%. You had said, “I found a conference for young people with cancer and we’re going.” And I said, “Okay, yeah, that sounds great.” And you said, “But it’s in Denver, we’ve never been to Denver.” And I didn’t care.
It was the first time that you seemed genuinely excited about something since your diagnosis. And that phone call was a turning point. You sounded so hopeful. I didn’t care if that conference was in France, we would have found our way there. And we would have made it.
Ali
It fell on a week of my chemo cycle, and we decided that we would go anyway. I remember being so overwhelmed in such a positive way that I had never experienced in my life or since being diagnosed. It was the first time that I was in a room full of people that totally understood what I was going through.
The first or second day, we sat down in the lounge and I sat next to Emily, who’s now a great friend, but we didn’t know each other at the time. And she said, “Hey, what kind of cancer do you have?” And I started telling her, and then I said, “How about you?” And she started telling me, and it was a normal conversation. And I hadn’t had a normal conversation with somebody about cancer since everything happened, and I honestly thought I would never sit with someone who really understood what I was feeling, who was my age. Well, how could you have a normal conversation about something like cancer? Like, that shouldn’t be a normal conversation, especially for someone so young. How do you feel?
Sara
For me, it was an interesting weekend, because you lit up all weekend. It was the first time that you seemed genuinely happy since your diagnosis. And I mean, for once, I was the less social one. I sat with you when you had those conversations. And I just took a backseat and I listened. I’m such a talker that that was different for me. It was eye-opening and so special. And I just felt so great.
But I thought that because you’re on a chemo cycle, I was going to go to this conference as your chaperone, that I was going to take care of you as much as you would let me, and that I was going to go and not get anything out of it. I thought I’d go to sessions that maybe you couldn’t attend. I didn’t even know there were sessions for caregivers. I didn’t even look at the agenda, because I didn’t think it was for me.
So we went to check in at the registration desk. And for those that have never been to CancerCon, there are different colored lanyards for your name badge. So if you’re a cancer survivor, then you wear one color. If you’re a medical professional, you wear another color. If you’re a caregiver, you wear a third color. So we checked in and Ali grabbed a red lanyard for cancer survivors. I’m just staring at the lanyards, and I just kind of, like, look at Ali like I don’t know what color to get. And she goes, “You’re blue. You’re a caregiver.” And I was like, “Am I?” That was the first time that I didn’t really feel like I was. You’re not even letting me drive you to your appointments, so how can I possibly be a caregiver? And then I realized there were sessions for caregivers. And it was an experience for me too. And I walked away after meeting people that understood what I was going through.
It was the first time that I kind of let myself say, “You know, Ali’s not the only one going through this. I’m going through this too.” Of course it’s different for me than it is for you, but it’s still something that I’m dealing with. And at that point, I hadn’t let myself deal with that. I was just so focused on Ali. Is she okay, does she have everything she needs? She’s not really letting me take care of her, but that’s not going to stop me. And so now what? What can I do? And that was so special for me. I really felt like I was at home, too. And it was life changing, so life changing.
Do you remember the first event that we went to in Denver that weekend?
Ali
Oh, the pre-conference mixer. Oh, God. It was at the Hard Rock. We walked up to the doors, and I just felt myself about to have a panic attack because I’m such an introvert. Like, right before it all started, there were so many people walking in. And I was like, “Oh my God, there are so many people here.” And I looked at Sara and I was like, “Um, I’m just really tired. Long trip today. We could just go back and start fresh tomorrow. We don’t have to go in there.” And she looked at me and she’s like, “Yeah, right.”
So we walk in, and there’s a welcome table. They’re passing out People Bingo Cards. So now, if I wasn’t panicking then, I was 100% panicking now. I’m like, “You mean I have to talk to people?” For People Bingo, there’s a bingo sheet and it has a list of things that might apply to different people. For example, has two dogs, only has sisters, or loves blue. There was a square for someone who has a twin, so people were coming up to me all night.
Charlotte gave me the paper and she could see the panic on my face. And she said, “You know, you can have some liquid courage. The bar’s that way.” And I was like, “Yeah, thank you.” And so we went and got a drink at the bar, and the person next to me asked me about my bingo card. And I’m like, Okay, I guess this is starting. I guess I’m playing.
I mean, we’ve been to what, four CancerCons? And that’s still one of my favorite experiences at any of the CancerCons we’ve been to, because we met so many people who we’re still very close with.
Sara
Some of the people that we met playing People Bingo are still some of our favorites. That is a really big highlight for me. There’s this amazing group of nurses from Kaiser right here in the Bay Area. And every year, they bring a new group of guys to CancerCon and that year they took us under their wings. And they, you know, made sure that we were eating, they jumped on us. They took care of us that weekend and every CancerCon since, and we’re just so blessed to have them.
And I know for you that your first CancerCon was the first time that you were referred to as a cancer survivor instead of a cancer patient. What do you think your survivorship meant then, and what does it mean now?
Ali
I had never heard the term before, “survivorship”. And at the time, I couldn’t even really wrap my head around what that meant, because I was still obviously in my treatment. I mean, I was taking chemo pills while we were there every night before I went to bed. And so survivorship seemed so far away. I thought that I wouldn’t get there. I thought it was going to kill me. And so I couldn’t even let myself think that far ahead into what survivorship would look like.
And then my treatment ended. And I was declared NED. And everyone around me was so happy. And I was like, what do I do now? Like, so much of my life has been devoted to fighting this thing for the last year and a half. And I didn’t know what to do with myself. And so it was just weird. And now it’s still weird because I can’t get away from it. Like, it’s just always there. Brain cancer is so chronic that it’ll probably come back and it’ll probably kill me and I just hope that I’m 65 and not 35, you know? And so, I mean, I’m still getting scans every four months and that means I only live a few months at a time. I really can’t make a lot of future plans just in case my cancer’s back. My scanxiety takes over because I’m convinced that the next time I go get an MRI that Dr. Peake is gonna call me and say, “Ali, we found something. We have to figure this out.” It’s so hard to deal with, but I try not to get overwhelmed with all those thoughts. I’m just trying to make the most of the life that I do have.
Sara
For me, um, your survivorship is tricky, because when your treatment was done, I was one of those people that was like, “Sweet! We’re done! We can put this in the past. We never have to talk about it again. We never have to think about it again. Like we’re good. We’re moving forward. We’re back on the track of our lives before cancer.” And that’s just unrealistic. There are just two parts now: before and after cancer. The way that I was feeling was not fair to you and what you’re going through. I understand that it is very evident for you all the time. And I feel so guilty to still have you. One of the things about being in the cancer community is that not everybody makes it. Cancer can come back in the next year and that’s tragic. So when I see my friends who are caregivers lose their person, it makes me feel guilty that I still have you, and the only way that I know how to handle that guilt is to be active in the cancer community and to try my best to, you know, help others the way that I was helped.
Ali
Yeah, my survivor’s guilt is paralyzing sometimes, like I’d lay in my bed all day crying in a ball. It just, it breaks my heart every single time cancer takes somebody. It’s just not fair. It’s awful. And I hate saying it’s not fair, because I’m so not that person. I never say that about me getting it. I never asked, “Why me?” I only asked, “Why not me?” Because it’s true, it could happen to anybody. But then, like, losing people is just a kick in the gut.
So do you remember, after our first CancerCon, when we both came home? And were like, on a high? It was a life changing experience. What did I say that we should do? To apply to be on the steering committee next year?
Sara
Yeah. And that was an idea I could get behind. We wanted to help plan the conference. Yeah, I was thrilled at the opportunity. Like, oh, there’s gonna be openings on the steering committee. Let’s do it. We should both do that. That would’ve been such a positive impact. So I got my application together and was so excited. And the application deadline comes. I’m like, “Ali, I sent my application in. Aren’t you so excited?”
And what did you do?
Ali
I forgot. Yeah. I forgot to send in your application.
Sara
And at the time, I remember being very disappointed. I was like, dude, this was your idea! Like, how could you forget? I worked really hard on my application. I got all my letters of recommendation, like how could you forget?
Ali
Chemo brain, oh, chemo brain is so real.
Sara
And it ended up being the best thing because I found my own home. Like I really found my home. And I ended up serving on the CancerCon steering committee for two years, I helped plan CancerCon in 2017 and 2018. And then after that, I was asked to give a keynote at CancerCon 2019. And that’s ultimately what led us here today. A representative from Kaiser was there and heard me tell Ali’s story. And so it was such an awesome thing, it was such an awesome thing. Next to the birth of my daughter, finding out Ali was cancer free, and marrying my husband, it was the highlight of my whole life. Such a wonderful experience that I’m still so grateful to Stupid Cancer for.
Ali
I remember sitting in the audience sobbing. I, like, handed my daughter to somebody else, like “Here, hold her please.” And I’m sobbing watching you because I’ve never been so proud of my entire life. And Sara, that was amazing. You are amazing.
Sara
Man. And you know, even as your diagnosis date gets farther away, and your cancerversary gets farther away, like, you’re still dealing with new challenges every year. And I think one of the biggest challenges for you now is as a mom, like you were put on this earth to be somebody’s mom. You’ve been bothering me about it for 30 years. As you heard Ali mention earlier, she had to go through fertility treatments. And she was told after all her treatment that if she and her husband wanted to conceive a child, they would have to go through a lot of other procedures to help with that. It wouldn’t be conceived naturally. So what do you have to say about that, missy?
Ali
My oldest daughter just turned three at the end of June. I had another baby girl six weeks ago. And Sarah and I just turned 30. So not only did I have babies without using my frozen eggs, but I also got to see my 30th birthday, and I’m still cancer free for almost five years. So, it’s great. The only reason I’m here is to be somebody’s mom. And I’ve felt that way since I was a kid. And so hearing that I might not be able to have kids at all was devastating. I think I cried for a week. Then two months later, I was pregnant. Yeah, talk about an emotional roller coaster! I mean, my kids are everything to me. And my husband too. Ryan and I have been together since before I got sick. But we’d only been dating for a few months when they found the tumor. And I I looked at him and I said, “You did not sign up for this. Like, get out now.” But he said, “Neither did you.”
Elephants & Tea is a quarterly magazine. But they do online content monthly. It’s a magazine written for and written by the AYA cancer community. So they always post about, like, people submitting writings for certain topics. And so they posted about a topic maybe six months ago? The topic was Letter to my Former Self. I had written a blog post about being diagnosed a few years ago so when Sara saw the Elephants & Tea post she said, “Hey, you should submit your writing for this and see if it gets picked.” And I was like, “Yeah, okay, maybe… at least I don’t have to read it anywhere. I could just submit the writing.” And it would’ve been like, almost anonymous, it’d be great. Well, they picked it, they liked it, and they put it in the magazine. And then they do these monthly Perkatory events on different topics that relate to the AYA cancer community. And they pick certain people to read and share things that they’ve written. And so they wanted me to share mine at a Perkatory session. And I thought, well, they won’t know the difference, can you just go on and read it? Like, I don’t need to be there, right? Because it was virtual. And, you know, I didn’t have to be in person anywhere. And I did it. And as I said, it’s been almost six years, but I am obviously still really emotional about it. It was about my initial feelings about being diagnosed. So I logged on to this perkatory. And I opened my book to start reading what I had written. And I got two words in and couldn’t speak, because I was so emotional, and I was crying so hard and trying not to cry in front of a million people. And I lost it. And I literally could not speak anymore.
Sara
And so I mean, with us being twins, we can’t really be far apart. You know, we actually live in the same apartment complex. And at the time, I had my one-month-old daughter on my lap and I logged into the Perkatory. I’m watching and then I see Ali not being able to make it through. So I grabbed my daughter, threw a blanket over her head, and ran across the courtyard as fast as I could run with a baby. And I just opened the front door and I went and I sat right next to her while she read. I was off camera and I just held her hand and we both cried. And we cried and cried and cried. That was only a couple months ago and it’s been five years since you’ve been cancer free, and it was just so emotional.
And so you know, you told me multiple times between the two of us that you’re glad that you were the one that got sick and not me because you thought it would be harder for you to handle if it was me. One thing that’s always stuck in my head is you’ve told me multiple times that you don’t know how anybody can get through cancer without having a twin because it brought us so much closer. Like, we don’t argue anymore, we really just appreciate each other every single day. You’re my best friend in the whole world. I love you more than life, dude.
Ali
Same. Yeah, yeah, I don’t know. I definitely couldn’t have a deeper story without you. You came in. Ryan came out of our bedroom. You both sat next to me and held my hands while I read. I don’t even know if anyone could understand what I was saying. Honestly, I was sobbing so much but, I mean, I definitely could not have gotten through cancer without you.
And now, even still, you drive me to my scans. And I let you. Well, mostly because you have to watch my daughter. I’m just kidding. But still, whenever I have paralyzing feelings, I know you’re there for me and you totally talked me off the ledge and are absolutely there to support me.
Sara
Well, I’m so proud of you for doing this with me. I know that virtually this is much better, but I’m super proud. And we’re just so grateful to be here.
By Sara Quilici Giles & Alison Quilici Cooper
Thank you to Gilead Sciences for sponsoring this story.
