My name is Anna. I am 35 years old. Before February 15, 2018, I was just like everyone else in the world.
I thought it would be a casual doctor’s appointment during my lunch break. I would be told that my colonoscopy was clear. Worst-case scenario, I would get some prescriptions to make my symptoms go away. How could anything really be wrong with me when I was always healthy, never had a surgery, barely had any colds, and had just delivered a healthy baby girl?
But then the nurse walked in and said, “Oh my goodness, are you here by yourself? You poor baby.”
My heart dropped and I felt blood rushing to my head. I started drawing something in my notebook to help calm myself. I have to slow down. She is probably just being dramatic.
But then the oncologist came in and went through a speech that he had probably delivered hundreds and hundreds of times.
Just like that, I became a stage 4 colon cancer patient — with a 3-month-old infant.
I was in disbelief. Stage 4? Wait, isn’t stage 4 the very last stage? Yes. Not only that, it looks like I’ve had colon cancer for a while. I was given six to eight months to live with no treatment and one to two years with treatment because my condition was so far gone. My only thought was that my daughter won’t remember me. I might never see her walk or speak. I will be a stranger in photographs while I am feeling and looking my worst.
Adjusting to Life with Cancer
I was back to living like a child again, unable to work or take care of my infant daughter. I attended countless hospital visits. I needed my parents. So much for a strong, independent, driven, I-can-do-anything-and-be-anyone woman. I just wanted to sleep.
I became a paranoid germaphobe with limited guests in the house, constant hand washing, hand sanitizers, masks, gloves. Flu season became my stay-at-home-and-hide-from-everyone season.
Social butterfly I was no more. I actually didn’t know who I was anymore — it all depended on how I feel that day; better yet, that minute.
I didn’t know how to function in this new body. I wanted to run with my daughter, but wait — I was always out of breath, tired, in need of a nap. This body didn’t match who I was in my mind.
I was scared of my own daughter when she went to childcare — those kids love all that dirt and mess. I was terrified of her passing germs on to me. Learning how to function in the real world as a stage 4 cancer patient took a full year of adjusting.
Enter the Coronavirus to Further Rock My World
Bam — just about two years after I got my terminal cancer diagnosis came another hard-to-process, lifechanging event.
All of a sudden, my weird hospital masks and paranoid gloves became our new normal. I fit in now! Enter social distancing, no handshaking or hugging, and new, cool, trendy handwashing techniques. My everyday life for the past two years had now become everyone’s life.
COVID-19 took over my social media, TV, texts, emails, and phone calls. I almost forgot that I had cancer. (Wait… Do I still have cancer, or have I just been training for this pandemic all along?)
Reality check: The pandemic just added a whole other set of things to worry about. The demons and fears that I conquered over the last two years were back. I started reliving my life right after diagnosis all over again, that nightmare.
The fear, paranoia, unknown, germs… oh, those darn germs. Back in my safe shell I went, hiding from everyone. Sleepless nights. What would get me first: COVID-19 or cancer?
Feeling Sick: Was It Cancer or Coronavirus?
During the first week of quarantine, I didn’t feel well, to put it mildly. Sweating, fever, vomiting, chills, loss of appetite, sleepless nights.
Was it cancer? Was it side effects of my cancer drugs? Was it COVID-19? I didn’t know. The symptoms and side effects of all three were so similar. I was in bed for days dealing with it all. The alternative of leaving the house and possibly catching the virus (if I didn’t yet have it) was even scarier than my symptoms.
After four days of being sick my family decided it was time for me to go to the ER. I got tested for the virus but wouldn’t know the results for four days so I was admitted due to my coronavirus-like symptoms. I was isolated for eight days. Nurses and doctors followed the protocol as if I had the virus. Four days after my admission, I was told that the test was negative, whew! But why was I so sick? I was tested again to make sure that the test was accurate. Still negative.
Pneumonia-like infection was my official diagnosis. I was given fluids and tons of antibiotics to treat pneumonia, but it didn’t feel like pneumonia. I was so confused. I don’t know or care anymore, I thought. Just make me better and get me out of this virus center.
A New Shot at Hope
All of my first-line cancer treatments stopped working in October 2019, a year and a half after my diagnosis. My body really hated chemotherapy and radiation. Unfortunately, a rare genetic mutation and the status of my health prevented me from qualifying for most of the available clinical trials — the only Hail Mary left to save my life.
I always thought I was special and different, but this wasn’t what I meant. Luckily, though, I found a doctor who believed in me and who gave me hope. He found a trial and I qualified. I was the first one in line in the waiting list. The timing was perfect.
Is this real? I thought. Let’s go! Now or never!
Clinical trials are more involved than standard cancer treatment, which typically include combinations of radiation, chemotherapy, surgery, and already approved drug therapies. My particular clinical trial is for a form of immunotherapy, a type of medication that activates your immune system to help your body fight the cancer.
I felt the universe was protecting me and watching over me. For the first time, I allowed myself to hope that my life could not only be prolonged, but that I could be cured.
The trial was scheduled to start on a Monday March 16, 2020. But on Friday, March 13 — how ironic — I got the dreadful call. My trial had been postponed indefinitely because only urgent hospitalizations were being allowed until further notice.
The clinical trial process involves many hospital departments — it’s a health production. When the hospital’s departments are not operating as usual, clinical trials and other elective surgeries and treatments are among the first to be postponed.
I hung up. Speechless, crying, hyperventilating, I start spinning out of control. How can my life not be an urgent matter? I am not dead yet, people. I matter just as much as anyone else.
A clinical trial for cancer treatment is often your last lifeline when everything else fails. This is why it was so soul crushing for my trial to be delayed. The news felt like a death sentence.
Would I even be healthy enough to continue to qualify for the trial once the world goes back to its new normal? My only hope was that a very last drug I was prescribed would sustain me until this world health tornado was over.
Before You Complain About Social Distancing, Consider This
I’ve been fighting so hard and so long. When I was first diagnosed, I vowed to myself that I would see my daughter get on her very first school bus ride. I went to over a dozen hospitals, saw countless number of doctors, went through every medical treatment. I have done it all. I would do it all again.
But to spend almost a year finding a clinical trial that might save your life and then be unable to grab that lifeline doesn’t seem fair. It feel unconstitutional, un-American. This isn’t us, this isn’t giving a fair chance for everyone to fight for their life.
I am immunocompromised and I am sick of being stuck at home. I can only imagine how everyone else feels. Not breaking the rules of social distancing is hard, I know. We all want to run away from the four walls we have been trapped within for the past two months. But then I think, how would I feel if I got sick? How would I feel explaining to my daughter that it was just one time that I snuck out because I needed to escape.
How would you feel if you got someone you loved sick and they didn’t make it? Would that one time of not doing the right thing be worth it? So I sit myself down and remember, at least I’m safe and it can always be worse. I have to set the example and do the right thing.
I see my friends’ social media feeds, but I stopped talking to the majority of them. I have been a broken record asking people to do the right thing and stay home. But I know they need money, they have to work. I understand, yet I am bitter.
People make irresponsible choices and then people like me suffer because this virus isn’t going away and I remain stuck with no way out.
They say that they are healthy enough, lucky enough, and strong enough. They never even catch colds. If they were to get the coronavirus, they would bounce back.
Yes, I think to myself, that’s exactly what I thought when I walked into my very first oncological consultation. I wish people understood my anger now, which is the same anger I felt after being diagnosed with my cancer. As more parts of the country start to reopen, people are suggesting that high-risk people just stay home. As if that’s the solution to our problems?
How do we have surgeries? How do we start clinical trials? How do we save our own lives when the world is not safe enough to let us do that?
Living with Pink Glasses On
I don’t know the current status of my cancer. My routine scans used to be every two months; it has been three since my last one. The cancer center where I receive treatment had an early outbreak, with at least one employee sick with COVID-19. Do I get my scan and bloodwork and possibly expose myself to coronavirus? I trust no one because this virus is a monster.
For now I have been staying at home and living with my pink glasses on, hoping that my cancer hasn’t spread.
About the trial, I finally got an update last week. Another four to eight weeks, hopefully, until it can begin. I am hoping for the best, but I have to be realistic. Every day I worry whether something will get me soon. What will it be first: COVID-19 or cancer?
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