All the Things No One Told Me About Breast Cancer

In support of Breast Cancer Awareness month, I spoke with a 30-year-old woman (who wished to remain anonymous) about her experience with breast cancer during treatment, as well as what her life looks like now that it’s “over.” What she expressed to me was that it’s not really ever going to be over for her; breast cancer will always be a part of her story. What it won’t do is define her. Below are her words. – Amelia Diamond

The first thing that’s popping into my head is that — and I know this sounds dark — this isn’t over for me. I don’t think it’s ever going to be over. People are so focused on it being over. “You’re done with chemo! Let’s celebrate!” I have never felt that way, that I want to throw a party because it’s done.

When my last round of chemo ended, I was so violently ill, I physically couldn’t have celebrated. The other thing was that my dad was sick. I felt like: I don’t feel happy about this, that my dad is sick, that I got cancer, that I have poison pumping through my body. I still didn’t have hair. I still had more surgery. I’m going to be on hormone therapy pills for the next 10 years. It doesn’t just stop and then you’re done with it.

I’m still navigating moving forward, trying to figure out how things will look a year from now, five years from now, 10 years from now. I don’t want this to define who I am because I’m so much more than this fucking breast cancer diagnosis and treatment, but at the same time, it’s always going to be a part of me and my life.

On “Fighting” Cancer

All this language about “fighting cancer,” I don’t think I felt that way. I grit my teeth and endured what I had to endure. I had such a positive attitude before I began treatment. I told myself, “I’m going to be that person who doesn’t complain and is an inspiration to others. I’m going to go on runs through chemo, keep working through chemo. I’m going to drink green juice.” That was not me at all. I couldn’t get out of bed or go to work. I couldn’t take a shower, much less run. I drank chocolate Ensure throughout chemo. It was ugly.

There are so many prescribed ways of how you should go through cancer or cancer treatment, emotionally, but there is no right or a wrong way to be a cancer patient. There’s no right or wrong way to be a “survivor,” either. I think that’s really important. Do what you have to do to survive and get through it.

What They Don’t Tell You

Everyone handles chemo differently, but it hit me really hard. I was hospitalized with shingles halfway through. I was in the ER after my second infusion with a really high fever because my immune system was so compromised. In terms of side effects, I felt like I had a really bad case of the flu, I couldn’t eat; I had horrible heartburn, extreme fatigue and migraines; my nails fell off; I was nauseated and vomiting; I had all the fun side effects of menopause, bone pain so bad I couldn’t walk, mouth sores…woof. It’s basically the worst hangover you’ve ever had x10000 that goes on for five months, plus hair loss. My body ached so much that lying down in bed wasn’t even comfortable.

They don’t tell you that it hurts when your hair falls out. Things get in your eyes when you don’t have eyelashes. My range of motion is still limited on my mastectomy side from both surgery and radiation (and I’ve done so much physical therapy). You completely lose feeling when you have a mastectomy. Like, I could burn myself with straightener and have absolutely no idea.

There’s no right or wrong way to be a “survivor,” either. I think that’s really important. Do what you have to do to survive and get through it.

On Comprehending

I’m still learning to comprehend all of this. I’m at Sloan Kettering Cancer Center all the time and I’m the youngest one there by 30 years. There are moments where I think that this can’t be real.

My dad started to get really sick in 2015. He passed away September 2017. The whole time, he had this attitude about accepting things he couldn’t change: “This is not something I’m able to change; but what I can change, I will.” I tried to channel that, which is why, when I was able to work again, I got a job at an organization that funds cancer research and patient services, and ran a half marathon on behalf of my dad. I want to do whatever I can to raise awareness, raise money.

But I have to accept it, too. I got my marching orders, and had no choice but to grin and bear it. I’ve had moments where everything feels fine, and then moments where it completely takes my breath away and it’s not fine. It comes in waves. I cry on the subway sometimes, and I am thankful for the people who let me be alone.

I’ve been reading all these grief books since my dad passed away. Sheryl Sandberg wrote about how, when her husband died, people would say to her, “I can’t imagine what you’re going through.” And she would say, “I can’t imagine either but I have no choice.” It’s true. It is what it is. You have no choice.

This is not something I’m able to change; but what I can change, I will.

On Toggling Life Events During Cancer

My husband and I got married in September 2015, about five months after my dad got sick, and I was diagnosed with breast cancer in June 2016. I wish I didn’t have to handle those things at once, but I did. I had to continue to be a wife, a daughter, a sister, a friend, and while I could still work, an employee. My dad’s sickness was the hardest thing for me. I knew from the moment I was diagnosed I was going to be okay, even though I continued to find out so much more throughout the process (like when I had my mastectomy and they told me my cancer had spread, which meant a treatment plan of chemo and radiation). But with my dad, we had no idea how quickly his health was going to deteriorate. For that reason, my husband and I got married fast. The wedding itself was a high point and a distraction. I had more fun than I ever could possibly imagine at my wedding. Dancing with my dad was the most bittersweet moment.

I remember my dad telling my family, “This is going to be so much harder on all of you than it’s going to be on me.” Later, I realized that’s how I felt when I was going through my treatment, too. I was in pain, sure, but it must have been so much harder for my husband to watch me go through all of that.

On Being an Advocate for Your Own Health

I felt my lump in the shower, had my husband feel, and he had me go to the doctor. My grandma died of breast cancer at 49 and my dad had the BRCA2 gene, so I guess I was pretty attuned to it. I was tested five years ago for both BRCA 1 and 2 and I didn’t have either, so I thought I got a free pass and I was going to be fine. I had never been taught how to check for lumps — that’s something everyone should ask their gyno how to do if they don’t know.

My gyno did full breast exam and said she didn’t find anything, so I asked her to check again. I kept pushing it. She said I could get an ultrasound if it would make me feel better. I got one, they saw the lump and sent me for a biopsy, and that’s how I was diagnosed. It’s scary how much of an advocate you have to be for your own health. If I had waited a year, my situation would be have been very different. If someone reads this that’s the one thing I want them to take away: Be an advocate for your own health.

On Working Through Cancer

I got diagnosed June 2016 when I was 28, then had my mastectomy in July. I turned 29 that month. I worked the day until my surgery, then went back four weeks after surgery, then started chemo at the end of August. I thought I was going to be able to work through chemo: I’m young, I’m healthy besides the cancer, I’ll be fine. I quickly realized there was no possible way to do both; I even couldn’t brush my teeth without having to lie down after. I was given the most aggressive treatment they have. They call it the red devil, like something out of a cartoon. So I went on disability.

I had surgery again in January, radiation in February and March. There was no time during all of that for me to go back to work.

If someone reads this that’s the one thing I want them to take away: Be an advocate for your own health.

All I wanted was to be normal. I had just gotten married and I wanted to be a newlywed. We cancelled our honeymoon. It was hard to realize I wasn’t going to be the great inspiration I thought I was going to be. It was hard to realize I wasn’t going to work. It was hard to accept that I had to focus exclusively on getting better.

I’m working again now, raising money for cancer research, advocacy, awareness and patient services. I’m lucky to have this job where I feel like I’m making a difference, and where my situation is understood. Having a job that feels like I’m really doing something, making a difference, matters to me.

On Kindness

I could write a book about all the stupid things people have said to me. Before my reconstructive surgery post-mastectomy, people were like, “You’re going to have amazing boobs!” But I have no feeling in my chest, in my armpits, in my back. I have one nipple and a scar across my chest, so fuck off, I wouldn’t wish this on anyone.

That said, I could also write a book about all the amazing things people have done. Friends and family and so many complete strangers have shown me kindness. When you’re going through something that’s difficult, whether it’s losing someone or being sick, one of the hardest things to do is communicate with people. I really appreciated people who continued to reach out without expecting anything in return, who kept putting their hand out there without expecting me to do anything back.

I am so lucky to have an incredible family and friends. I cannot say enough things about my husband. I wouldn’t have been able to do it without him. He did everything for me. He works nights and was at every doctor appointment with me. He hasn’t missed one and it’s been over a year and a half. He cooked and cleaned and shaved my head and cleaned my hair off the pillow before I could see it. He was 29 years old when this started; you don’t expect that at that age, if ever. The whole “in sickness and in health” thing, we really put it to the test. At the same time, at this point, we are unbreakable. We made it through this and I feel like we can make it through anything.

What’s Next?

My life has been changed forever. There are certainly parts of being a normal 30-year-old that I feel like I kind of watch from afar, or from a balcony. I’m learning how many parts of life will be affected going forward. I am on medication that stops my cancer from coming back (I will be for the next 10 years), and am now going through medically-induced menopause. It means I can’t have a child. I didn’t expect that. Navigating how to start a family after this is the next big thing.

Another big thing I want to do next is ensure I’m raising money and awareness for breast cancer research. At the end of the day, I am okay. I am fine. But so many people go through this who aren’t fine. There’s always someone who has it worse, and I want to find a way to help. I want to do everything in my power to make a difference where I can.

I feel sort of unstoppable now. I’m not scared. I’ve faced some really scary things in life: I had Stage 2 cancer. I held my dad’s hand during the final moments of his life. And I’m still here.

Click here to make a donation to Memorial Sloan Kettering cancer center. Visit the American Cancer Society for more information on breast cancerTo get involved in the ACS, click here.

For more stories from different women about their experience with breast cancer cancer, listen to Episode 41 of Monocycle: Surviving Cancer in Your Twenties, and read this Round Table with two-time breast cancer survivor Ann Caruso.

Photos by Louisiana Mei Gelpi. 

More from Archive