It all started six years ago, my optometrist found a spot on my eye after I started seeing flashes or flickers of light. He sent me to an ophthalmologist who told me it could be one of three things – a bundle of blood vessels, a freckle/birthmark or melanoma. He emphasized the later but also told me freckles/birthmarks on the eye were common and sent me to a retina specialist. I was beyond scared but it didn’t really phase me as I thought it was just a fluke, that I had freckles all over my body and this was just another freckle. It all seemed so unreal. I was only 34 and was in the prime of my life, achieving my career goal as a high level manager, being surrounded by a loving boyfriend and great friends and family and what I thought was perfect health, never really needing to see the doctor except for an occasional bout of the flu or minor cold, never taking anything, not even aspirin. I began seeing my retina specialist on frequent intervals, which started out as every three months and slowly progressed to every 6 months, then nine, then twelve. Over the next few years I underwent multiple tests, frequent MRI’s and CT scans. One test would lead to something else and then I would be diagnosed with other issues throughout my body. I would be referred for one surgery after another to rid my body of abnormal growths that could not be determined to be cancerous or not because of their location but “just shouldn’t be there”. I declined the surgeries as I just didn’t think it was warranted. I had no symptoms of anything really being wrong, it just seemed to me that maybe I was born like this and that the doctors were really not sure either. And the spot on my eye seemed stable, even developing a halo around it. My retina specialist told me this was good because it prevented it from growing. As the time between visits grew and grew, I became less scared and the visits became more of a formality and somewhat over cautionary to me. So during my last visit, when my retina specialist told me he wanted to see me sooner, in three months, I just thought it was precautionary, that it was just to rule out an anomaly in one of the tests.
But what I left with that day changed my life forever. After running some more tests, my retina specialist told me I had ocular melanoma and handed me a brochure. All the life had run out of me, I was cold and couldn’t hear anything, I was just numb. The brochure was rather grim, providing statistical information about the disease noting it was a rare and aggressive cancer spreading to the liver and lungs. I was told I would be scheduled for surgery within a month and that’s when it hit me like a ton of bricks, I broke down sobbing. While my doctor and his staff were empathetic, they could not console me, there was nothing they could say or do to make this go away or even make it better. I was beside myself, literally. I had come to my appointment like all the others by myself and was in shock and disbelief and total fear. I was on my way to get my hair done for my brother’s wedding that weekend. I cried the whole way there but managed to pull myself together only to hide the news from my mom, who was also there. I kept it inside that weekend, only sharing it with my boyfriend, trying not to ruin the moment for my family and embracing the joy of two lives being joined together by love.
I returned to work on Monday, planning on working all the way until my surgery. But I wouldn’t make it, my body gave in and I ended up in the emergency room after several days of severe cramping, having my badly plastered appendix removed. I told the doctor I had cancer and needed to have tests run before my surgery and asked if this other inconvenience could wait. He told me no, this took priority over everything. That was October 5, 2014 and I spent the next five days recuperating in the hospital. Once I was released, I started the preoperational work for my next surgery – getting blood work done and more scans to make sure the cancer hadn’t spread. On October 21, 2014, while still recovering from my appendectomy, I underwent surgery to place permanent metal markers in my left eye to help guide the radiation. The surgery went well but after surgery, I was miserable; I was in pain and could not see. Not having this sense emphasized my loss of hearing even more. I began giving up, I could not see myself getting better – I couldn’t see or hear, leaving me feeling so isolated.Everything I knew was gone. I couldn’t drive, or go anywhere, it was painful just to have the light on, I couldn’t even watch tv. My independence was gone. I thought about how horrible this was and if I would ever be the same again, if this was how my life would be now. My thoughts kept me trapped in my own personal turmoil.
As if I hadn’t suffered enough, the week of November 21, 2014, I underwent a week of radiation. The radiation seemed so barbaric and cruel. The location for the procedure was cold and dark, a big industrial warehouse that was so unwelcoming, a big graphic photo of an eye undergoing the procedure, blood and all was all I saw each time I went. I was made a custom face mask and mouth piece that was then placed into a metal cage and tightly fastened over my head. My chin, head and knees were strapped tight so I wouldn’t move. What they call refractors, but felt more like big needles were placed strategically in both the upper and lower eye lids. I nearly passed out the first day, requiring the process of getting setup to be undone and started all over again. I made it that first day, the second round around, sweating so bad I could only wear a tank top and pants rolled to my knees, no socks no shoes and a fan blowing cool air on me even though it was winter outside. To get through the rest of the week, I had to take valium, but not the full dosage as I had to be awake and able to focus on the red dot. Any slight deviation on my gaze could mean the chance of permanent blindness. The method of closing my eyes and drifting off that I had used for all the other tests could not be done here, I had to be awake and alert. It felt like I was being forced to endure something so horrific, I felt so closed in and alone, it was utterly terrifying. And at the end of all this, I thought I’d suddenly and remarkably feel so much better, that I’d be healed. But that could not have been farther from the truth. I still could not see and my eye started burning and oozing, then peeling. It was extremely painful and then I noticed one eyelash fall out and then two and then I was only left with half of the bottom eyelashes. A constant reminder that I couldn’t seem to forget what I had endured or what had invaded my body. After all of this, I was more broken than before. My emotional pain had come to the surface, front and center and I was in agony over my new life with this terrible disease.
I remembered reading a sign at my oncologist’s office that said “Cancer doesn’t control me”, thinking to myself, yeah right. All I could do was think about what was and how could this be and why. I saw my whole life pass in front of my eyes, frightened at the thought that I would not be able to enjoy life to the fullest now. I wallowed in my own self pity for another two weeks or so and then pulled myself together, telling myself this was not me, that I needed to fight this, that I couldn’t let it win, I was a go-getter, a winner, that I oversaw holistic programs that helped other women with a variety of issues on a daily basis and I needed to now help myself. I was going to do everything in my power to find help even if I had to find it on my own. I had a strong support system of friends and family but they didn’t know how to help me and thought– like me after the surgery and radiation– I was healed. Some came closer, others pulled away not knowing what to say or do and being afraid for what might be. It stung, my heart longing for comfort, empathy and unwavering love and all the while not understanding why. It forced me that much more to help myself. I went online and found resources offered through my health provider and asked that I be allowed to participate in the services offered even though I did not receive treatment through them. The nurse navigator told me absolutely and then shared the programs offered by Wellness Within.
On December 1, 2014, I began going to Wellness Within on a daily basis, taking every class offered. It became my new work, and little did I realize I was working on me. It saved me from me, from giving in to despair, isolation and fear. It helped me to find little simple joys again, to redefine my life and really live life to the fullest. Wellness Within made me feel so welcomed and loved, unconditionally. They got me and I got them – it’s a mutual understanding and love for one another, for those fighting the same but different fight. When I am at Wellness Within, I am in peace, in acceptance of who I am and how far I have come with nothing to prove to anyone. I am allowed to focus on me and my happiness and forget about the worries and woes of this disease. I don’t have to come dressed up or put on a fake facade that everything is ok. I am allowed to me, to be emotional, to cry and grieve when I need to or be overwhelmed with joy at something so simple as seeing a flower bloom on the first day of spring. I’ve shared my struggles and listened to others facing the same challenges and have made true forever friends that are nurturing and loving. I’ve been given a toolbox filled with many different tools to be able to face the daily challenges in my life and am able to pick the tool that best fits my need at that moment– maybe reading a book, mediation, yoga, nutrition, writing, dancing, drumming, walking and so many more. Whatever avenue I choose, it is because of Wellness Within. I believe so strongly in Wellness Within that I share the program with everyone I know that has been affected by this disease and donate on a regular basis. I have shared my experiences with friends who aren’t affected by cancer and they too are in awe of the program and wish they could experience it without enduring cancer. It’s such an amazing program, going deep into your core, a program everyone could benefit from. It is because of this that after returning to work in March 2015, I continue to attend Wellness Within classes in the evening and weekends. I know the impact that Wellness Within has had on my life and continues to have, keeping me grounded and focused. I was able to find happiness and hope that I wasn’t sure existed anymore and I am no longer angry over why I got this disease, but am able to embrace it. Knowing without it, I may not have ever met the wonderful people I have met or learned the life changing lessons I needed to learn. I am forever grateful to all that contribute to this program. You have truly changed my life for the better. Thank you!