My cancer journey began almost a year after my son was born, on my daughter’s 1st grade back to school night September 2012. It was like any other day except I would later get a horrifying diagnosis. For about a week I was experiencing blurred vision that was getting increasingly worse. All the usual things went through my head. (Too many hours staring at a screen, something under my contact lens, eye infection ?) However that day it occurred to me my left eye seemed to be the culprit and as I was walking into my company parking lot I covered my right eye. Looking out of just my left I saw a black veil over half my vision as if a shade was lowered. I was scared. I went straight to the ophthalmologist. She had me read words on a piece of paper until halfway down I couldn’t. I couldn’t see. My retina was detached. That was the first shock. How the heck could I have a detached retina without an injury? She called a retina specialist and got me in right away saying I would need surgery immediately. I called up my husband working in New York and said he needed to meet me there. My brother in law sat in on my daughter Gianna’s back to school night. We were the last to be seen. Everyone in the office had gone home but the Retina Doctor. He called me in and while tilting me back in an exam chair looked at my eye with a bright light and magnifier. He then performed an ultrasound. The whole time I’m thinking its to prepare for Retina surgery. After he’s done he sits back in his chair with a look of absolute sadness as though he discovered something seriously wrong. He said I had a tumor in my left eye that grew so large it detached my retina. In his 30 years of practice he has seen less than a handful of cases like mine. It was a cancerous tumor in my eye and because of its size most likely I would lose it. He knew exactly what to do sending us to Wills Eye Hospital in PA, world renowned for eye care.
Almost a week later my eye was gone. It was a relatively easy process. I went in with an eye and came home without one the same day. While I healed I rocked some cool eye patches and even went back to work. Eventually I was fitted with a prosthetic eye painted by hand by an ocularist. Emotionally I felt pretty bad ass. Being an anxious, timid person most of my life I felt pretty invincible. I lost an eye but I had my life and my beautiful kids. Although I bumped into a lot of people and had to learn to drive again slowly. Eventually I made it around the block, to the supermarket and to work. However, the door on cancer wasn’t closed and I soon realized ocular melanoma was a deadly aggressive beast. After genetic testing on my tumor I received a 70% chance of metastasis occurring within two years. 90% of OM patients have the cancer spread to the liver specifically at which time it was always fatal. A cancer this rare, only 2K diagnosed within the US a year had very limited research and treatment options. It also grew and acted totally different than skin cancer. We immediately got on the waiting list to see one of the few oncologists in the world that treated metastatic OM. Also in PA my new oncologist put me on an adjuvant low dose chemo in an effort to slow down the progression. It was a 6 month process and for the most part I was able to work and take care of the kids.
I still was hopeful. In fact I felt this cancer was my teacher and I it’s student. Everything changed. I found joy in the simplest things from changing my sons diaper to singing in the car with my daughter. On one occasion I will never forget Gianna was trying to get my attention from the back seat. Being a new half blind driver I wasn’t really listening and focusing on the road. Finally, she yelled out “Mom do you hear me? You lost an eye not an ear!” We immediately laughed hysterically until it hurt. We laughed a lot every day. Gianna became interested in anatomy. She was the first one after my husband to look at me without my eye. She told me I was beautiful and nothing would ever change that. Gianna’s compassion and complete openness to learn made me fantasize about her becoming a doctor one day. I told her she easily could and would be a good one! The only annoyance was every two months I had to go the the radiologist to be scanned. I got an MRI of my liver, CT of chest & pelvis. After a while it felt like I lived there. At the same time I felt safe as though if something popped up we would fight.
A year and a half later from sitting across the retina dr something did pop up in my liver. It was a small tumor. I got the call at work. I carried my cell with me everywhere even the bathroom and guess where I was when I got the news? The bathroom. My oncologist wanted me in the next day. He told me to talk to my husband, take a breath and know I wasn’t alone. He would use everything within his power to fight this and keep me alive. Luckily I was in a bathroom stall where I could sob uncontrollably until I gained my composure and told my boss.
I started a unique therapy only done at Kimmel Cancer Center at Thomas Jefferson hospital. It’s called immunoembolization. Accessing my liver through my groin they would saturate my liver with immune busting drugs one lobe at a time, a month apart. It required an overnight stay where I had to lay flat on my back for six hours which by far is the worst part! It worked. After two treatments I was NED – no evidence of disease.
During this new journey I needed to tell Gianna the truth. It was no longer just a boo boo in my eye. I had to use the C word. I watched her little face as it turned. Tears rolled down her face. She equated cancer with death. Young and smart and beautiful my little girl said, “I can never be happy again.” I tried to assure her we would. Happiness was a choice we would make every day. She asked if I would die. I told her no one including the smartest doctors know when or if I will die but it was a possibility she needed to be prepared for. She also needed to know I would be sick and won’t be able to do as much. However, I said right at that moment no cancer was in my body and it stayed that way miraculously for a year and a half. That treatment was saving my life and it gave me much more time than most OM patients ever get.
Unfortunately something strange happened after that second treatment. Although I was NED and back to my usual 2 mos of scanning I still felt sick. I felt sick for 6 mos after not knowing why. I found the pain unbearable. I could no longer lift Jayden in and out of his car seat. I couldn’t get through a day of work. No one knew why and almost everyone thought I must be depressed or crazy. After endless specialists, viles of blood, analysis of my spit and feces, crazy diets and supplements I began to question my own sanity. My company nurse and boss recommended I go on disability while I figure this out. After all they could no longer rely on me. I was a mess not from cancer but from some unknown illness. I started thinking it was worse than cancer. How could I fight what I don’t know? Like a domino effect my health spiraled out of control knocking everything I loved down with it. I couldn’t work, I could hardly take care of my kids and a trip to the grocery store would put me in bed for days. If the cancer wasn’t enough this certainly was my breaking point. I was determined to get a diagnosis.
Finally, a doctor out of Columbia in NY concludes its myalgic encephalomyelitis or chronic fatigue syndrome. I thought it was a joke. Really ? How could all this suffering be fatigue ? Then I read everything I could get my hands on about it. A million people have it and there’s no standard test to diagnose and no standard treatment. It has been around for decades, people bedridden literally unable to walk to the bathroom or feed themselves in extreme cases. I didn’t feel any better after the diagnosis. I only grew bitter and angry. Cancer didn’t take me down but THIS did in a very big way. Absolutely no one understood not even me. I felt completely alone. The only solace was online support groups. Honestly that was the only reason I was able to put one foot in front of the other and learn to live with this. That was my only choice because the doctor at Columbia wouldn’t treat me without my Oncologists blessing and my oncologist quite frankly thought he was a quack.
I discovered a whole underground of patients without a voice. They couldn’t even get out of bed to get to the doctor, how and why anyone care about them. Know what M.E. patients die of ? Suicide. After decades staring at the ceiling of your bedroom wouldn’t you want to die too? The disease gets less funding than male pattern baldness. Slowly after a year I began to realize I was disabled truly. I had to admit I wasn’t going back to work and I wasn’t going to get better. I had to accept a life with pain and a crippling fatigue that stole meaning from my life. I did however accept it. I accepted this reality finally and in a sense it set me free. I lost countless friends. It put an incredible strain on my family who had already gone through hell with me. So I learned a new normal once again. I had to literally write down my goals for the day. I broke every task into bits. I saved my energy for the absolute necessities. I slowly rebuilt my life once again. As I pieced back my life to the best of my ability while fighting for respect from doctors, pain management, and dignity my old friend cancer returned.
I’m now on my 9th immunoembolization. Although I was fighting this whole other battle while cancer stayed dormant my Oncology team called it a miracle. The only way my mind makes sense of this insanity is that my suffering was for a reason, my body went into hyperdrive and supercharged my immune system. So it knocked me on my ass literally for a year and a half but it was keeping my cancer away. That’s my own personal diagnosis fringe theory and it makes me feel at peace. Now I’m back fighting cancer again too but you know what I discovered an even deeper love for myself. I discovered TRUE friends. I discovered life is extraordinary in the smallest details most overlook every day. I never take it for granted now. I was able to let the bitterness and anger behind. I accept my life does have meaning. I accept every broken piece of myself. I also see people who are completely alone. I have a radar for them now and I won’t let them feel forgotten. Now I can extend a hand and say I’ve been there and I know every life deserves a chance.
“Feel like sharing tonight : 📝 Once I became really sick people started looking past me as if I were a ghost 👻. It felt almost as though I was near death ☠️ and one word or look would kill me right there. Or maybe they thought my disheveled hair and mind was due to an addiction? Laziness? Apathy? Possibly cancer and all the repercussions was contagious. Who wants to catch that ? 😷 No one wants to live in this dark and miserable place. People only react to ❗️fight ❗️👊🏼 ❗️fight ❗️💪🏼 ❗️fight ❗️ 🤜🏼 and of course don’t forget to ✨SMILE ✨😬 Be a light 💡of courage for the world. Don’t make anyone uncomfortable 👀 😱 Of course from my bed I’ve lost my dignity. Who I’m I really anymore ? Am I me ? I’m a number on a pain scale ⚖️ I’m a level of fatigue and exhaustion. What do I bring to the conversation? I thought I was a ♥️kind♥️ person but being sick changed me. Sometimes I wake up 😴 😳and realize I’m not at all that “kind” person anymore. I’m not mean either. I’m not really living neither. When my kids look at me do they know I’m still in there screaming to get out? 🆘 After all, this was just a joke right ? 😏Someone is coming soon to free me. 🗝 The oncologists ? The Palliative Care drs ? The nurses? The social workers and psychologists? No. Nothing. This is it. The fleeting moments of greatness between the bitterness. I look back and realize how long I’ve been doing this and still don’t know what I’m doing. Am I doing this right ? Who do I ask? Are these reactions normal ? Am I normal ?
😜 Definitely not normal. The cells of my body are not normal so the rest sort of starts to fall with it. Sanity 🧐 Memory 🤞🏼 The feeling of “I got this” Woops I don’t…. The only thing that’s real is the cancer that can be seen on a MRI. Everything else is up for debate. 🗣 If I lost you in this post or anywhere along the way , I’m sorry. I push and pull you. I need you, I don’t need you. Sometimes the pain just splatters out on everyone when I was trying so hard to ✨SMILE✨ 😬 I forget what a conversation feels like. I forget what that absolute will to conquer a day feels like. 🏃🏻♀️ I forget what “clean” feels like. I’m forever feeling greasy or messy or unkept. (Pictures 📸 🤳🏼are deceiving) I forget where the time ⏰ went between treatments and scans. It slips through my fingers. Did someone catch my children’s laughter 🧚♂️ while I was gone ? Did they hold it for me ? What about their tears 💦? I can hold those too. I had a good grip on those until I didn’t. I had that mommy ✨MAGIC✨ that made it ALL ok. I had inner peace 🙏🏼 My advice to you (unsolicited…) is to live life like you’re LIVING. (As my dear friend Rachele would say..) Dying is no fun, trust me. (It’s not a dance 💃🏻 song 🎼) Make it your own. Create for yourself what no one could imagine. Nothing else matters. It’s all an illusion. This race to be smartest, toughest, kindest is not important. The only one who knows what’s important is YOU. Don’t catch the disease, catch the lesson. I’m not a guru. I’m just a simple yet incredibly flawed human. I was forced to learn where you can wake up with the endless possibilities in a day ☀️🌈. Once in a while just take a peek 👀 under my covers and let me know how your day went. Just because I grow tired of telling you my pain and fatigue story. It won’t kill me promise.”
“How appropriate this showed up on my feed on my 40th birthday. No words could be truer for me. It didn’t take this birthday to face death, unfortunately I faced that much sooner than I would’ve liked. The small fact that I’m still here has immense importance no matter how messy and painful the ride. I hope you too are reminded that all the scars and experiences of life make us grow into beautiful beings. We all have a purpose and gifts to share with the world. Thank you for sharing your gifts with me that allowed my life to have meaning to this day. My birthday is bright simply for the gift of life bestowed on me when so many others have not lived to see those birthdays and milestones. ✌🏼❤️🌈🕯”