Ocular Melanoma

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    The day I didn't want to die

    The day I woke up and didn’t want to die anymore was April 2, 2018. The day after Easter and April Fool’s Day, I had my own resurrection of sorts. The fact that my journey through a major depressive episode has a beginning and an end is truly bizarre to me, but it is my unique journey and my personal set of circumstances. So first I’ll take you back to the beginning.

    August 24, 2013 just after 1am I woke up and felt nauseated. I headed to the bathroom to vomit but when I got there I ended up having a grand mal seizure (after 8 years seizure free) and hit my right temple hard on the porcelain toilet. My husband heard me fall and had to bust open the bathroom door to find me unresponsive. As he yelled out for a family member to call 911, I came to. Later, he told me that his first thought was that I had died. We were both very scared. He cleaned me up, because l wet my pants, while I sobbed loudly. He hurried me out to his truck and drove me to the hospital that is just a mile from our house. He wheeled me in and they took me right back. After tests, observation, the loss of my driving privileges, and a concussion diagnoses – I was sent home. I followed up with my neurologist the very next day. He wrote me out of work for a week to recover. That’s when the #Depression came over me like a fog, getting heavier and thicker as the week progressed. My husband and I quickly recognized that something was very different and not right about me. While waiting a few months to get in with a psychiatrist, my neurologist and PC doctor both tried their hand at prescribing anti depressants to know avail.

    My low hit me one night that November. I realized just how suicidal I was and felt sure that my family would be better off without me. Somehow, I had just enough consciousness to tell my spouse exactly what I was thinking. We were up most of the night making plans to keep me alive. I took a leave from work and in time I got on the right medication.

    I wandered through a few jobs after having been with the same company for 12 years. I had to take a break from my profession of funeral directing as it was too intense for me while I was in my darkest days. In time I learned to deal with my depression, mostly through distracting myself, which became exhausting. Any time I let my guard down, in my mind, than I would entertain thoughts of not wanting to be alive. I knew I couldn’t let my family down and take my own life so instead I had daily wishes that death would find me. I had many ups and downs for more than 4 years. In 2017 I got diagnosed with #OcularMelanoma (#Cancer on the inside of my right eye), I lost my relationship with my oldest child for personal reasons, I turned 40, and became a workaholic for awhile. Each day I went through the motions of life but had a dark heaviness in my soul. My life felt empty and meaningless. I would mention it to my husband from time to time but we were at a loss.

    A woke up at 6am on April 2, 2018 immediately recognizing that I felt unusually light. As I got ready for work I tried to put my finger on it. I recently returned to my original company of 12 years, and now have an amazing manager.. I had just cleared up a nasty sinus infection.. then, driving in my car it finally hit me… I DID NOT WANT TO DIE! The realization brought me to tears. I felt the biggest relief in that moment. All day I thought about this newfound freedom, not telling anyone my secret, not wanting to jinx it. I have had to re-learn what it’s like to have a wide range of emotions. It’s both exciting and terrifying. The first few days I was nervous that I would wake up and be broken again. I am also hyper sensitive to my daily routine since April 2nd hoping to make sure that I do not revert back to a seemingly meaningless life that lacks color.

    I had already grieved the loss of my former self because I had felt so disconnected that I didn’t even know how to be “me” anymore. I had become a shell of myself and ended up with no self esteem.

    Now I am connected – mind, body, soul – and each day I get more comfortable with the new old me. I may still have some depression but depression no longer has me.

    I can’t explain why the intensity of my depression took a dramatic drop on that day. I wish I could understand and offer it to others. I know the darkness that depression brings. By grace I have hope again and feel alive. There is no promise that my happier feelings will stay… So I’ll take it day by day while enjoying this time of light in my life.

    Kathryn Carson

    Dealing With Doctors Who Have Poor Bedside Manner

    I drove to the ophthalmologist’s office in a state of controlled emptiness, a mental blankness that felt nothing like panic and more like a deliberate choice to interact as little as possible with my own emotions. I’d been in and out of so many hospitals and doctors’ offices and imaging suites by that point that I didn’t honestly think an answer would be coming that day, either. I certainly didn’t think anything was wrong in my eye. After all, it was my legs that were numb. Nothing was wrong with my vision. But I endured seven sets of dilation drops and gamely stayed still with my head in the examination rig and tried not to blink as the doctor bored into my left eye with his bright lights and crowded into my face with his loupe. Then the ophthalmologist muttered to himself, loupe still in hand, that hand still propped on my face and whisking back and forth as he flicked the light toward the deepest angle of my left eye, “Huh, yep. Melanoma. Choroidal. Yep.” I’d like to say that I felt the world fall out from under me. But I’d been through so much in the previous two months that I simply thought, “Did I hear that right?” And I expected him to move the rig aside, push back on his rolling chair, fix me with a mournful look, and tell me I had cancer. Instead, he left me sitting there, pushed back on his rolling chair, stood up, walked to the door of the examination room and opened it. Sticking his head out, he called to his staff, “Hey, get in here. You need to see this. Choroidal melanoma. You won’t see another one like it.” As an afterthought, his hand still on the door knob, the doctor turned to look at me. I could barely see him past the bars and dials of the ophthalmology exam set. He asked, “That’s all right, isn’t it?” I know the expression on my face had to be as empty as the feeling in my chest. A tiny burst of emotion tried to well up in me, like a worm poking its head above ground. That emotion was the tiniest thread of white-hot rage. This supposed professional couldn’t be bothered to look me in my good eye and tell me I had cancer. Instead, I had become an instant curiosity, a freak of nature, a walking example of something he’d only ever seen in textbooks. Cancer is, after all, as common as dirt. But all forms of ocular melanoma (OM) combined occur –at most- six times in a million people. It qualifies as a rare disease even by America’s standard of 8,000 cases per year, and OM has fewer than that many cases annually worldwide. But I didn’t know any of that then. All I knew was, the form of cancer that had apparently invaded my left eye was so rare it could make a doctor completely forget I was a human being. Two women shuffled into the room, looking shamefaced at the floor. And I realized I had a choice: be angry, or let my affliction achieve some good. Let them look, I thought. Because if their being able to recognize it saves someone else’s life, it’s worth it. The rage didn’t dissipate then—and it still hasn’t, three years later—but I learned to view it as unhelpful, as an impediment to my own health and others’ ability to care for me. As terrible as it was to find out that I had cancer the way I did—as terrible as that doctor’s bedside manner was—it taught me two important lessons that I would need in the coming days. The first lesson: This disease was so rare that I had little choice of where and by whom I would be treated. Most doctors wouldn’t even necessarily recognize OM for what it was, let alone know how to treat it. I had been sent to this doctor by a neurosurgeon (an already pretty special specialty). Then this doctor promptly sent me to a second ophthalmologist for another opinion that same day. I was in such strange and rare company with this disease that I would later discover there was only one doctor in the entire state who treated it. Many states have no OM specialist at all. I would later end up traveling to another state entirely to participate in a clinical trial. And the second lesson: This disease was so aggressive that the only person who could care for me emotionally was me. In their haste to deal with my OM, few healthcare professionals could give a second’s thought to how I, the patient, was doing. In the following six weeks, I would go through multiple eye appointments that lasted upwards of five hours each, a PET/CT scan, two eye surgeries, and a week of implanted radiation in that same eye, all of which required hours of highway driving. Very few people asked how I was doing. They didn’t have time. All my appointments were shoehorned in on people’s lunches, or were end-of-day—I often walked out to empty parking lots alongside the people who’d examined me. The situation was that desperate. In the week between the final measurement of the tumor in my eye and the surgery to cap it with radioactive iodine, the tumor grew another eighth in size. No one was taking the time to check on me, the person, because they were literally working through exhaustion and hunger to save me, the body. So I owe that terrible doctor my thanks. His words were the key to understanding everything about the disease I had, and the experiences it brought me: “You won’t see another one like it.”

    Anna Zawadzki

    Searching for Treatment for Ocular Melanoma

    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

    For My Father’s Last Eye, the One Untouched by Melanoma

    My father lost his right eye under the ether and the surgeon’s scythe. He had a cancerous melanoma his optometrist misdiagnosed as a cataract before he left on a trip to Europe, eight years ago. A week into his trip, he woke up in Rome with a lint-like bulge pulsing and burning well behind his eyelid. They scheduled him for emergency surgery the next day, but when the tumor had unexpectedly grown bigger and twice as dense, they realized it wasn’t what they thought and sent him home immediately. *** One evening when my dad was talking about his lost eye, I said, “At least it doesn’t hurt anymore.” I was in a bad mood, uninterested in his loss. My dad just breathed in and said, “You know, I would rather have my eye with it hurting than to have no eye and no pain. The only reason I had it removed was so I could live.” In the moment, I attributed my dad’s loss to being overly emotional, but of course, that’s not true. Losing his dominant eye changed his experience as a computer programmer for work and a mechanic on the side. Recently, when I asked if work was harder with only one eye, he said he was lucky because while software programming, he doesn’t need to see well with both eyes. On a computer, everything is a flat 2-D, so depth perception doesn’t really matter. He can see everything he needs from a single angle. However, I remember when he first lost his eye and he would come home early and exhausted, his eye patch over his right socket and his left eye drooping with fatigue. It’s much worse as a mechanic and especially as a welder. He has to be careful that he wears a full headset and that his goggles are in top condition. Perhaps he would stop being a mechanic altogether if it weren’t for the unfinished 1965 Triumph TR4A IRS that has slept in our garage since I was two years old. He painted it robin-egg blue, and disassembled parts lean against the walls of the basement — the hood, doors without windows or handles, the thin steering wheel hung on a pin. In addition to the dangers of a spark flying in his good eye, it takes longer for him to work on it without depth perception, especially when trying to see letters stamped into the metal sockets or to find different wrench sizes. His lost vision impacts his love for driving itself, too, not just the cars he makes: when he drives his Montero through the mountains to his favorite ski trails, he can only see the spread of the front window and a small slot of a side window. It may not be too dangerous, but it’s certainly less of a view. Sometimes, my father wishes he had never had both eyes in the first place, so he wouldn’t have to take the ache of losing one eye, adjusting, comparing himself to when he could see better. At the same time, he is reverently grateful that he did have both for at least half of his life. When his eye tires, he begins to see as though looking through a paisley patterned glass. He flosses by touch and brings his fork to his mouth by bending his arm in degrees, his elbow against the edge of the table (a habit by now), and when cooking he avoids cutting vegetables. In the yard, he can’t see branches and snags against them while raking or chasing our dog. *** My dad still types at 70 wpm, makes gluten-free German pancakes and replaces sprinklers in the backyard on Saturdays. He still welds bike frames, trims and edges the yard and modifies the wood shelves and cupboards he made twenty years ago. He even helps my younger brother work on jigsaw puzzles, though he has to press most pieces to feel the fit. An outsider wouldn’t know my dad only had one eye because of the prosthetic that resides in the upper right hole of his skull. He wears this prosthetic to connect with others and to help them feel comfortable. It is also physically comfortable to have his socket cushioned with methyl methacrylate, a soft, malleable plastic also used for hip and knee replacements. My dad’s recovery has been far from simple. He works hard to keep his cancer in remission and his body in commission. He goes to the hospital every three months, either for an ultrasound or a CT and MRI scan to check for any tumors. My dad prefers MRIs; during CTs, he drinks a berry-Barium contrast smoothie that smells like sunscreen, and the nurse injects a thick, hot fluid that aches through his body. The MRI also requires an IV, but only for a small injection of contrast. The nurses at the clinic love my dad because his veins stick out, robust, unlike the bleak, flat veins of most of their cancer patients. For both scans he has breathing instructions, such as to hold his breath five seconds after inhalation. Day to day, he follows an exercise routine and takes a melatonin pill to help him sleep and keep up his immune system. My dad appreciates what he does see and lets himself look at his world longer. He is more aware of what his body does well and uses it more often, cross-country skiing in the Rocky Mountains and pruning the giant Australian Willow that shadows half of our backyard. He empathizes with others more and even contacted a man through a KSL news piece, who had the same cancer but didn’t recover, being his friend until he passed almost five years ago. As a parent, he makes sure I have health insurance and has me get my eyes checked regularly at the ophthalmologist instead of the optometrist. Chances are, I will never lose my eye like my father did. I am vulnerable to get the same cancer he had, both because I am my father’s daughter and because I have blue eyes and freckling skin which predispose me, mildly, to melanoma. However, the combination of seeing a medical doctor during my eye exams and knowing my father’s history almost ensure that any defect (unlikely though it is) would be caught early and treated with minimal loss. *** The first day my dad spent out of bed after coming home from surgery, our family sat at the dinner table, taking turns covering one eye and seeing if we could bring our cups to our mouths without spilling, how far back we could still count fingers where our vision had been shared, or how quickly we grew dizzy while spinning. My father breathed with a sleepy smile, his eyeless socket swollen shut, thin skin around it mottled and purple. I remember that night like few others and can still draw from calm of it. There was an unannounced and familiar light, something akin to a thinness of the veil. There was the quiet sacrament of feeling touched to have our father. We took turns passing around his eye patch and saying different painted lenses he could have: an eight ball, Sauron from “Lord of the Rings,” a marble with a ribbon through the middle. My step-mom who has a lazy left-eye spoke up, offering to switch seats with my dad so each could see the other better. For dessert we pulled out frozen blueberries, high in anticarcinogens, and a tub of thin vanilla yogurt we dished into paper cups. When we went to bed, it was past time to turn the lights out — the sprinklers clicking outside, the chugging pipes, slowing to a stop. A longer version of this story was previously published in print in “Relief Journal.” We want to hear your story. Become a Mighty contributor here . Thinkstock photo by Jupiterimages