I first quasi-met Aliza Stern Guyer, 51, through the “front porch” project. You remember: Talented local photographers would shoot family portraits during the pandemic, forcing us to shower and leave our houses for a few precious quarantined moments.
Guyer shot photos throughout Arlington; many of my friends raved about her talent. What I didn’t know is that she was battling breast cancer at the time. The cancer is currently in her lungs and liver (metastatic). Her treatment has been grueling at times, and she was even treated for PTSD.
Her husband, a Tufts professor, was luckily able to arrange his work schedule around her health needs. She also isn’t afraid to ask for help, as she good-naturedly told me. One source of support: Shir Tikvah, the family’s temple, where her son will be bar mitzvahed this weekend. The family is also looking forward to a trip to Hawaii this winter, arranged through a friend’s GoFundMe initiative.
Guyer and I chatted about battling cancer while being a mother, how to be your own health advocate and the nature of confronting mortality while trying to live in the present. At the end of Breast Cancer Awareness Month, it was an honor to speak with someone so courageous and, most of all, candid.
Breast cancer is an important topic for the Jewish community, especially because of the BRCA gene. Did you have a genetic predisposition to cancer?
The irony of this whole thing is I have zero family history. I don’t have any genetic markers. It was just very bad luck.
To be honest, that’s why I’ve been so vocal and transparent. I was a nurse practitioner. My whole background had been in healthcare before that. I was a speech pathologist. I live a healthy lifestyle.
Then I had my first mammogram at 40, and I passed out, which is very unlike me. I literally started falling backward. They had to catch me. It was relatively traumatic. After that, I was like: “I’m fine. I don’t need to put myself through this every year.”
And then six years went by. In 2019, it was a total fluke, I got really sick with the flu that year. It was taking me months to get better. I lost all this weight. And then, all of a sudden, I felt this weird thing—literally the size of a pea. I didn’t think anything of it.
When I actually went to see a doctor about it, they said: “Oh, you just have very fibrous breasts. Don’t worry about this.”
I literally didn’t even schedule a mammogram that day, which I blame myself for. But I honestly also blame them. Looking back, they should have said: “You’re so overdue for a mammogram. Get it scheduled right now.”
A few months went by. I was in the hospital for a cardiac test from the flu. And, while I was there, I got the mammogram. And they called me the next day to come back for a repeat.
I still wasn’t worried. I called my mom, and I was like: “Has this ever happened to you?” And she said, “Oh, all the time. Every time.”
So I went back the next day, and for some reason I brought my husband. I don’t know why, but I did. I’m glad I did: As soon as we walked in, we were met at the door by a radiologist, not even by the tech, who said we’d go straight to a biopsy.
My knowledge about this was literally zero. Then everything just happened, like you hear, in fast motion. I got the call the next day that it was breast cancer.
Something like 80% of people get breast cancer with no family history, and I had no idea.
What happened next?
They said I’d probably just need radiation and a lumpectomy. I was very calm about the whole thing. Even when they told me it had spread to the lymph nodes, I was like: “Oh, that’s good. It’s spread to the lymph nodes!” And they were like, “No, that’s not good.”
When it spreads to lymph nodes, then it can travel anywhere in your body. Within a week of thinking it wasn’t a big deal, I had stage three cancer, and they were going to do the most aggressive treatment they could possibly do. The type of chemo I had can’t be given more than once, because you will die.
You told me about switching doctors many times. Why?
The bedside manner of the doctors is really important. It was so traumatic for me. I had PTSD, severely. I was hospitalized for PTSD after all this. I don’t mind if you say that, either. People are ashamed of it. But then, the more I looked into it, almost everybody who has breast cancer goes through PTSD.
It’s almost like, when you’re studying for a test, and you’re all amped up. You study for the test, and you do well and then you get sick afterward.
What caused the PTSD specifically?
All of it. The doctors basically being like, “You’re going to die if you do not have this treatment.” And I was told that many times, and that was pretty traumatic. And maybe that was true, but it was horrible bedside manner.
The chemo was by far the worst. I kept going in and being like: “I’m not eating; I’m not sleeping. I’m barely surviving.” And they’d say, “Well, if you stop, you’re going to die.” So I just kept doing it. That was traumatic.
There were also a bunch of physical things that were really traumatic. During my port removal, I could feel them cutting into my chest. And they were like, “No, you don’t.”
There was a lot of infantilization. A lot of: “We know better than you. You don’t know anything. Just be quiet and let us tell you what you’re going to do now.”
I started having round-the-clock panic attacks. I went to the emergency room thinking my thyroid was out of control. It was fine.
I was hospitalized for two weeks at a [psychiatric hospital] because I literally could not function.
It’s so hard to find mental health care. How did you get in?
I had a therapist, and she got me in.
The bottom line is: Trust your own gut. Through all of this craziness, I kept saying, “I just need an SSRI,” which they didn’t want to give me, because I was supposed to be taking tamoxifen. As soon as I started on an SSRI, I was completely fine.
At the beginnjng of all of this, I had asked for a scan, because I was having some chest pain. And they were like, “There’s nothing here.” But trust your gut. Typically, with metastatic breast cancer, they don’t find it until it’s very far gone. But, because I had insisted on a scan initially, which they really did not want to do, they found it early, on a follow-up scan. So, a year-and-a-half ago, I started a treatment for metastatic breast cancer.
What’s different about metastatic treatment?
First of all, it’s a treatment for life. I will never not be on treatment. It’s not curable. There’s no cure. They try to just give you some form of treatment until it stops working. And then they switch you to another treatment until that stops working, and they’re out of treatment. Then you die. I’m laughing so that I don’t cry.
The life expectancy once your diagnosis is metastatic is about two years. It’s not a good prognosis, although they keep telling me, because it was found so early, that my prognosis is better.
But the reason I switched doctors again is I kept being told everything was fine. That I was just worrying. And then I asked for another scan, because I was having weird feelings in my stomach and my back. Guess what? Now it’s in my liver.
So I’m on oral chemotherapy right now. I take seven pills a day instead of going in for IV chemo, but that could change next week.
What have you told your son?
That’s been hard, really hard. He was 10 when I was first diagnosed. All along, I’ve told him everything that I know. Because, to be honest, it’s all very gray. It’s not like I can say: “Next week, I have surgery, and then after that, I’ll be fine.” It’s never like that with breast cancer.
There’s actually this fantastic woman who works at Mass General. She’s very well-known. Paula Rauch. She’s a therapist who specializes in talking to children about cancer diagnoses. She’s incredible.
Obviously, if you have a three-year-old, you’re not going to tell them everything. My son has always been mature beyond his years in a lot of ways, so he’s known as much as I have known.
The only thing I haven’t said to him is, “I’m going to die from this.” That’s too scary to say to him.
Also, at around age 10, kids start to separate. I thought he was separating from me because I was sick. Since I was going through all this, I was like: “Oh my God, he doesn’t want to see me. He’s embarrassed. I don’t have any hair.”
It turns out, I don’t think that’s what was going on. I think it was just natural. He was separating from his mom because he was a preteen.
How did you handle the logistics of having a child while undergoing cancer treatment?
I’ve never been too embarrassed to say, “I need help.” I couldn’t drive. I couldn’t even get out of bed without help. My husband did the bulk of it, but what he couldn’t do, I had friends who helped.
What about your work?
I didn’t work, really at all, for that initial year of treatment. I couldn’t. And then, this is a happy silver lining; When I got out of the hospital for PTSD, I was so afraid: What am I going to do?
And then the front porch project came about, which was seriously my saving grace. I needed something to do to keep me occupied, and it was five minutes. I can do that. It became like a full-time job. I was literally doing that every day, all day, which was great, because it wasn’t physically demanding at all. The other, unexpected bonus from that was I met so many amazing people who were so incredibly grateful.
Was Judaism ever a factor in your outlook or treatment?
We’re members of Shir Tikvah in Winchester, and being part of that community, they stepped up immediately. The rabbi and the cantor basically contacted us to do a food train. The cantor there, who I’ve become friends with, totally reached out and really stepped up. The cantor was taking me to radiation appointments. For me, it’s not a religious thing, but just being part of that community. If anything, I kind of lost faith, to be honest. I was like: What kind of God does this?
How does cancer change your sense of urgency?
You know that country song, “Live Like You’re Dying”? So obviously, having a kid, I think that’s the biggest, hardest part. I look at him, and I just feel like: “I want to watch you grow up.” That’s what I am sticking around for. Nothing else seems important to me. Sometimes I just look at him, and I start crying. And he’ll be like, “Mommy, why are you crying?” And I can’t really tell him. So I’ll just be like, “I just love you so much.”
I actually started keeping a journal for him. I definitely don’t write in it every day. But basically, whenever I think of something, I’ll be like: “Today you said this, and it really meant a lot to me,” Or: “Today, you’re really upset about this thing, and I just want to tell you: Here’s my advice on this.”
Because the unsettling thing is that doctors don’t know, either. I could have a few years. It could be many years. We have no idea.
Do you ever feel scared?
Oh, yeah. All the time. Usually when I’m alone at night. During the day, you’re busy. I’m just going to take the dog for a walk and go food-shopping. But when all that dust settles and I’m just lying in bed, I’m like: “Oh my god. How’s this gonna go down?”
My brain is such that I want to learn everything I can so that I’m prepared. So then I started reading. “Oh, so this is what happens. You have organ failure. Oh, OK. What does that feel like? What does that look like?”
And then I go down that rabbit hole. So I’ve tried to stop. Doctors don’t want to talk to you about it, because you’ll deal with it when you deal with it. But I feel like I had to know for myself, for my own peace of mind.
So now that I feel like I know more, it actually feels a little empowering. I can always say no to treatment. I can always just say yes to whatever I want.
I also have a really good therapist who only deals with chronic disease, mostly cancer. She was a friend of a friend. I found her on Facebook. Facebook’s amazing. I’m a big proponent.
She’s been really helpful, because she knows what to say and what to do: You need to write a will; you need to be talking to somebody about palliative care. All of these things that I was afraid to even say out loud.
This must feel surreal.
Even just talking to you now, yes, that’s the word. It’s all extremely surreal, especially because I don’t feel old. I’m 51, but I feel like I’m 25.