What It Was Like to Search for Treatment for My Rare Cancer

Five years ago I went in for a typical eye exam at a grocery store eye glass center, thinking I needed reading glasses but ended up with strange news. The doctor found a speck in the back of my eye and referred me to a retina specialist. That doctor could not figure out what was wrong with me and I ended up seeing numerous doctors in the Seattle area. Exhausted and frustrated that no one could figure out what was wrong with me, I stopped seeing the retina specialists and decided to live my life. That summer, other stressful events occurred – a school shooting at my university, where a member of my graduating class unfortunately lost his life, and my mother undergoing heart surgery.

After these events, I focused on my mental health and school work, and pushed my eye problem aside. Now in my last year in university, I plan on applying to graduate school this coming winter to become an occupational therapist.

However, the speck in my eye was always in the back of my mind, but I was unsure in what to do about it. Over the Summer of 2017, I had a strange feeling that I needed contact someone about my eye, and I ended up reaching out to Oregon to schedule an appointment.

On December 20, 2017, I was diagnosed with a rare cancer known as ocular melanoma in my right eye. When I first heard the words “tumor” and “melanoma,” I was in denial. How can I have cancer — or melanoma for that matter? I’m only 23; this has to be a mistake. As the oncologist continued to speak, I felt the blood rushing from my face, and I couldn’t help but sob. My eye, my vision, this was something I prayed would never happen, something I feared losing. Yet, it is coming into full swing. The oncologist explained the significant vision loss that would occur in my right eye, and although I would need to adapt to this change, it should not impair me from pursing graduate school or becoming an occupational therapist. With tears in my eyes, my mom and I stared at each other, holding onto those hopeful words in preparation for what this journey will take us next.

That evening, I contacted numerous friends and family members. I explained my situation, the uncertainty that I felt about my future and the confusion in why this is happening to me. I could not find myself to sleep much that night, or for several nights for that matter. I felt as if my body was falling apart as I ruminated on the toxic questions:

Has the tumor gotten bigger?

Has the cancer spread to other parts of my body?

No one else in my family has this type of cancer…

Why me?

The first two weeks felt as if I was in a void. It was difficult for me to find hope or positivity in a situation that could potentially cause more harm to my body. I kept kicking myself for not getting this cancer taken care of sooner – when five years ago, several doctors wondered what the little speck in my eye was, but did not provide me with the answers. And with that frustration, I resorted to the idea it was simply something I was born with – a speck in my eye that meant no harm but would cause occasional flashes here and there. Something both my mother and I shared.

But this wasn’t the case, and far from it. As these five years went on, the lump in the back of my eye grew to what is considered now as a medium sized tumor – stage 2A — an early diagnosis of cancer.

As I would lie in bed and stare at the ceiling, I would watch as the flashes appear before me. As it circulates around my ceiling, coming and going in waves, almost like a light show. When I close my left eye, I can see how much the cancer has consumed my vision. Anything in the upper left hand corner is grey, almost like a veil. In the right side there is static, almost like a television set. Evidence in how much the cancer has silently erased my vision without my knowledge. Without any pain.

As a senior in college, I was concerned with how I would be able to accomplish school and deal with cancer. Fortunately, I am blessed with a supportive and understanding professor who has provided me with a schedule that allows me to continue taking classes, complete my research project, and graduate on time. In addition, I developed a support system where I am able to reach out and ask for prayers, positive vibes, as well as an outlet to complain and question life. I researched organizations that help young adults with cancer such as First Descents and Imerman Angels, and connected with individuals who battled cancer during college.

One of these members is a cancer survivor. Her story began with an unfortunate start, but similarly it was melanoma. She told me she sought treatment in NYC, and has been cancer free for over two and a half years. She looked into the hospital for me and found that they specialize in rare eye cancers such as ocular melanoma. Delighted by this news, I immediately told my father that we have to go to NYC for a second opinion. He looked at me as if I was crazy. Why go to a hospital so far away? But reluctantly he agreed to my request, and this began the journey of researching and seeking treatment for my cancer.

In the meantime, other things occurred. I went through a CT scan, and found that the cancer did not spread. It was one less thing I needed to worry about, but a huge relief to know that the cancer was not stage IV.

One of the most surprising things that I have to mention is how slowly everything moves. Many friends and family members are constantly wanting to know what the next step is, what happens after “X” appointment and when will “Y” appointment take place? But it’s not as quick or as informative as I would like things to be. Once diagnosed I thought things would move quickly, as if the shift of focus and attention should be treating the cancer as quickly as possible, but before this could be done, other tests like CT scans, X-Rays, ultrasounds, bloodwork, etc. needed to happen first. All of this takes time, and each day I am still finding new information about my cancer. Although beneficial, it is frustrating that I end up finding most of this information outside the doctor’s office.

New York was an unexpected blessing in disguise. Despite the dirty streets and the grey gloomy atmosphere, New York was the city where I found confidence to beat cancer, and to accept the fate of my vision. After the doctors explained plaque brachytherapy to me, I felt hopeful that I will beat my cancer, and to live a long and happy and healthy life afterwards. Even though this treatment means my vision will decline over time, it is the price I need to pay in order to be cancer-free. My dream of becoming an occupational therapist will not be inhibited, but rather enhanced. I will be able to reach out to individuals in a way I could not previously – I have a greater understanding in what it means when your body does not want to do the way you want it to. I know how infuriating and frustrating this can be to the individual.

A week went by and my father discovered something new from doing his research: a different type of treatment that could potentially retain most of my vision and be as effective as removing my eye – proton radiation therapy.

Unlike typical radiation, such as X-rays and plaque brachytherapy, proton therapy does not have an exit point. Meaning that once the radiation hits the tumor, it stays there and does not interact with the surrounding healthy tissues causing secondary side effects. This is revolutionary technology and I am incredibly interested in this treatment.

I contacted California Protons, the leading experts in proton therapy, and found that the machine they use is the pencil beam – a beam that is the width of a pencil and circulates where the tumor is located. Later, I discovered this machine is also available at the Seattle Cancer Care Alliance. I immediately scheduled a consultation at the center, and I am eager to hear if they believe I will be a qualified candidate for this treatment.

My journey with cancer, like others, is a strange one consisting of travels across the country to find treatment, and ending up with finding the treatment I need in my own backyard. It is strange how life works, but I will write more once I find further information about treatment.

Stay positive.

Find the good in every situation.

Life is beautiful.

Follow this journey on Jaunts and Journaling