My race began…
when my mom was diagnosed with cancer. She had a cough that had been growing worse for years and no one knew why. There were days she couldn’t talk without having an attack. On bad days, she wouldn’t be able to speak and on the worst days, she would cough up blood. For years, doctors treated it like asthma. They tended to her symptoms but they couldn’t cure the disease.
It was hard to watch her suffer, but even harder not to know how to fix it.
On August 5th, my mom texted saying she wanted to talk on the phone with me and my younger sister at the same time. Regina and I had shared an apartment in Astoria for almost four years, and not once had Mom ever requested a group call. I knew it meant something was really, really wrong.
I remember how my muscles tensed as we called my mom from our couch in the living room. My breathing grew shallow as I heard the ringing over the static-y speaker phone connection and as she began talking, my body grew instinctively still. I was waiting to hear her say “cancer,” and fully expected to spring into action once I did.
But when the word finally came, I stumbled. This problem was out of my league.
Mom was so brave and optimistic as she told us she had been diagnosed with small cell cancer, an aggressively dangerous cancer in the lungs. She was so upset at the time, she’d missed some of the details the doctor had given her but had a referral to see another doctor soon.
I was dizzy and my ears were ringing as I tried to reassure her that everything was going to be ok. I suggested that we should try to get a second opinion but didn’t know if that was the right thing to say, or even how to find another oncologist. I didn’t know when it was ok to question doctors—and even more importantly, when to question my mother about her health decisions. I didn’t know what else to say except for how much I loved her.
During that phone call, my sister—a nurse—immediately hit her stride. She scribbled down notes as my mom spoke, intuitively knowing what the next steps should be.
When we hung up the phone, I felt numb. Powerless. I was sad, but couldn’t cry, and I’m the type that cries when I read a sappy greeting card. I was in shock.
I told my boyfriend, but couldn’t bring myself to tell my friends or coworkers for days. I knew what Mom’s diagnosis meant, but I wasn’t ready to share my fears and confusion with anyone outside of our tightknit circle.
I wasn’t ready for anyone to ask me questions that I didn’t have answers for. There were so many scary ones of my own that ran on a loop in my mind.
While I was still in a daze, my medically-savvy sister sat in on the first consultation. She knew something wasn’t right with the diagnosis of small cell cancer, or the plan of action.
My mom’s first oncologist was in upstate New York but after her first appointment, it was clear that both of my parents were shaken. My dad told me the cancer center they visited looked like an end-of-life care program. No one in the facility had any hope left that they would beat cancer.
I was so angry that my mom was being shuffled around and afraid that she was actually considering this center as a valid option.
That’s when I finally began crying. A lot.
But I kept my fears from my mom as best I could because I knew hers were even more intense. Around the family, I channeled my negative energy into the importance of sticking with the pack.
Since the beginning of our race, Regina had absolutely been in the lead, but it didn’t matter that I was in the middle or maybe even last because we weren’t competing against each other, we were a team. It was the family versus cancer and we were determined to win. I’m just so proud our anchor was smart and strong enough to save my mom’s life.
Regina was able to get my mom an appointment with NYU Perlmutter Cancer Center, where my mom got a second opinion very different than the first. Everyone was ready to spring into action and we suddenly had a new surge of energy as NYU joined our team.
For a while, my parents, Regina, and I spent nearly all day every day together, focused on getting my mom the right help. My parents stayed in our apartment since their house was four hours away upstate and we were going back and forth to the doctor on a daily basis. The four of us went to all the appointments as a flock. We wanted to be a presence and make sure my mom was given the best care possible.
The day before she was supposed to start chemo for small cell cancer, NYU called and told us the first diagnosis might be wrong and halted the treatment to perform more tests.
After all the bad news we’d already received, I was skeptical that the lab at NYU was going to find anything positive about a misdiagnosis, but Regina and my mom thought it was encouraging news. Again, I stayed with the pack as best I could and trusted our MVP.
NYU confirmed the misdiagnosis. My mom had a different type of cancer entirely: Neuroendocrine Tumor (NET) Cancer. Not only is NET cancer rare, but it’s also commonly misdiagnosed. If we hadn’t listened to Regina, Mom would have gotten the wrong kind of chemo.
When the news of the correct diagnosis came, it felt like something in the world was deeply broken. No way was my mom nearly poisoned with the wrong drugs. No way could a doctor make such a mistake.
But he almost did.
One benefit of the new diagnosis was that the survival rate for NET cancer was much higher than small cell cancer. Having an accurate diagnosis meant that my mom could finally begin the right treatments but as we figured out the best course of action, I spiraled with internal panic. The emotional side of me felt like I couldn’t trust medical professionals because the doctors upstate had been so wrong. Again, I kept the worst of my stress to myself and tried to get better at asking questions that would help me trust their decisions more.
When my mom’s surgeon explained that they might have to take my mom’s entire left lung in order to fully remove the tumor, I couldn’t believe how brutal and invasive the “best” plan sounded. My mom agreed and burst into tears immediately. Everyone in the family was fighting cancer with all the energy they had, moving as fast as we could, and the treatment was dragging us backward with fear.
The new plan was terrifying, but we stuck together and kept running.
I was even more shocked on the day of the surgery. When they wheeled my mom away I realized she might never come back. I thought she might die on an operating table. The last time I would have seen her was under harsh fluorescent lights, all of us wearing frail, proud smiles as a nurse pushed her off in a wheelchair.
Waiting was the scariest experience I’ve ever had. All I could do was try to stay positive and keep the rest of the family informed about what we knew, which wasn’t much. As my stomach flipped over itself, I felt like I was free-falling with no idea where I’d land. The dread lasted for four hours until the head surgeon came out to tell us that they had removed the tumor successfully. My mom was now in recovery.
For the record, they did take her entire lung. And she made a full recovery.
When she was fully healed from surgery, she began chemo. As the nurse stuck her with the first needle of sickening, powerful drugs, I couldn’t believe a substance that would make her so weak and miserable was the best protocol.
A few days later when she felt nauseous from the chemo, I found myself thinking that my life was a sick joke. How can life take so much and still demand more?
During the darkest months, it felt like there was a hand around my throat, waiting to strangle me if I made the wrong move. If life jostled me the wrong way, I could get choked at any minute. If I stopped paying attention, it could be my last breath.
While I ran with my family as a team, my personal goal was to not have a mental breakdown. I felt so powerless because I wanted to be able to do more, but I didn’t have any medical knowledge. What I did have, however, was a bedroom and a driver’s license. Whenever my parents would come for appointments and my mom would need to recover, I would give them my bed. I could drive my parents to and from appointments in Midtown during rush hour without getting in an accident, and I’m actually quite proud of that.
I lost a lot of sleep. There were nights when I’d stay up and fearfully imagine life without my mom. That day comes for everyone, but I was nowhere near ready to accept it. I’m not sure I ever will be.
My mom’s fight against cancer has been the hardest thing I’ve ever been through and I’m not even the one who was diagnosed. I can’t fathom how brave my mom had to be in order to survive. She always took her bad news with a smile and something gracious to say to the doctors and nurses. I don’t think I’ll ever have her poise, but I can try.
With the one-year anniversary of her surgery coming up in September, I can’t help but think back to the person I was a year ago and wonder how so much could change in such a short amount of time.
There have been some beautiful moments amidst the pain, and that has kept me in the race. I remember the first time my mom realized she could sing again. She’d thought she would never be able to because the tumor had been obstructing her esophagus. We stepped out of the NYU cancer center into the sunshine and burst into a chorus of “I’m Walking on Sunshine” as we walked down 34th Street. My mom was so happy she began crying in the middle of the sidewalk.
This past January, my mom and I decided to join the Women’s March in Manhattan, just a few blocks from where she’d had a lung taken and drugs for chemo pumped through her veins. I was so proud to walk with her in a sea of other strong women and know how hard my mom had fought to be alive at that moment. She wasn’t going to let anything prevent her from marching. I’d never felt so happy to be by her side.
It was so cold that I could see her breath billow as she cheered in the crowd, “This is what democracy looks like.” Being able to pick her battle cry out from the others filled me with hope. She’d always been a fighter and now that she had her voice back, she wasn’t going to give it up for a moment. We walked over a mile that day, only agreeing to go home when I reminded her of how much her body had been through recently.
My mom and my family have shown me that we are so much stronger than we realize, and capable of more than we know. I might not always lead the pack, but I’m still racing. And I’m grateful for every step that isn’t my last.