Monday, November 20, 2017. I was on my way home from work. I had a voicemail from my doctor to call her back to discuss the results of a full body PET scan. A month earlier I had gone to the Emergency Room and had a series of appointments and tests.
I called my doctor back, and although I have a terrible memory, I remember the phone call so vividly. I had already been told that I had nodules and lumps in my lungs, but she told me that these were the least of our worries. She went on and on about all the “activity” that my scan showed. This was the day that changed my life forever. Since then there hasn’t been a day I drive home from work that I don’t replay this in my head when I pass that spot.
Melanoma 2013: removed. Melanoma 2015: removed, sentinel lymph node biopsy, and full PET scan. I was ok. So now, two years later, how could I possibly have Stage 4 Metastatic Melanoma?
I am a wife, and a mother of two beautiful children. My son was not even six months old and my daughter was only two years old. I had so many questions. I was mostly in denial. I couldn’t tell anyone. I thought maybe if no one knew it wouldn’t be real. I had my wife, Kelley, my daughter, Colbie, and just had little Domenic. I can’t have cancer. I am not ready to die. I need to see my babies grow up.
It was three days before Thanksgiving. We usually host Thanksgiving at our house. On Thanksgiving, we shared with our family that we were expecting with Colbie. Then two years later on Thanksgiving, Colbie shared that she would be a big sister. But in 2017 there was definitely no good news. I remember crying to Kelley scared that it would be my last Thanksgiving. We had just lost my young niece. The rest of my family and I were grieving. How can I add the burden of my new diagnosis to their grief?
The news was finally shared. The outpouring of cards, messages, texts, and calls I received when people first heard was so overwhelming. I even had a poem of inspiration sent to me that I needed on those rough days. Even when time passed and the cards trickled down there was still one person that sent me one almost weekly for a while. It put a smile on my face each time. I received Facebook messages from people I haven’t heard from in years. Friends set up fundraisers for my family. I may not have been feeling too great but that didn’t stop me from going to see all those that cared to take the time to attend. There were people that gave us clothes for the kids, baby food, and diapers. We got pack-n-plays and sheets for when we didn’t stay at home. We had people bring us groceries and make us dinner. All of which I don’t know what we would have done without. Everything everyone did has helped to strengthen me in this fight.
Once the news was shared it was time for me to begin focusing on my continued journey through this and the several appointments I needed to attend. The one time Kelley had to go away for work was when I was just starting radiation. Luckily it was only a few days but it felt like an eternity. I couldn’t walk because of the pain in my hip and was unable to take care of the kids. Friends came to our need. People accompanied me to my appointments. I had to be driven daily for 10 days for my radiation and there was always someone able to do it, even if it was through a snow storm.
Everything went well with the radiation. The pain lessened and I was back up and walking. I wasn’t happy with how things were going with the rest of my care. There was miscommunication and this wasn’t helpful at such a stressful time. A friend researched and looked into melanoma specialists. This friend was the one that found Smilow and
Dr. Harriet Kluger. From the first call with the nurse at Smilow I felt the difference from the facility I had been getting care from. I met with Dr. Kluger and I was told it would be the same treatment and it wasn’t necessary for me to switch. It wasn’t the treatment that was concerning me, it was the care. I knew I wanted to be under the care of Dr. Kluger. Because of the logistics I decided to get my first treatment and wait until the new year to switch to Smilow.
After preparing to switch after the new year, it was time to focus again on my treatment. It was time for my first infusion of immunotherapy, so we thought. I went through several trips to the doctors just to be let down that I couldn’t have it due to elevated liver enzymes. Finally, after many trips to the doctors and several false starts, I was finally able to start my first infusion on December 29, 2017, with friends by my side. Following the first treatment, I was in and out of the hospital due to experiencing severe side effects. Friends watched the kids while I was at appointments or ED visits in the middle of the night. My body was struggling.
I had my first visit with Dr. Kluger at the start of the 2018. I was given prednisone to counter the side effects, but she was unsure if I would be able to continue treatment, which was devastating news. I found out they would begin to taper the prednisone, and were hoping to resume treatment by the end of January. Upon tapering, some symptoms began to resume. I went for blood work and it was discovered my liver enzymes were elevated again. Consequently, I had to increase the prednisone. Without continuing the immunotherapy the cancer came on stronger and with a vengeance. Something else had to be done. I began a new treatment. I was started on a targeted treatment since the immunotherapy wasn’t an option.
The median length of the new treatment working was 11 months. Much of what I have been through, side effects and such, I have been told is 'not typical.’ I struggled greatly with many of the side effects and often had to take breaks from the meds. I took it for 18 months until I was able to go back on immunotherapy. I was put on a low dose and only received one of the medications in hopes to lessen the toxicities. I was able to do immunotherapy treatment for a year. Again, with stretching out the time in-between in order for me to deal with the side effects and to help my body recover from the toxicities. My scans were looking great. The scans were ‘unremarkable’ which means much of the cancer was gone. I made it just past a year until my last treatment ended me in the hospital with pancreatitis. Because I suffered so many side effects, I was told that I was unable to continue treatment. My scans look good though, so now I just have to wait and hope that the cancer does not return. I am forever grateful for all that Dr. Kluger and her team have done to help me over the last several years.
The first year after I was diagnosed was the toughest. There have been so many ups and downs over the last four years. My body has endured so much and will never be the same, but I am in a much better place right now. I don’t know what the future will bring… heck, I don’t know what the next week, day, or hour will bring. But I am ready for it. I don’t know if I am being unrealistic thinking this way, but I am staying positive. I always keep up hope even in the worst case scenarios. I pray that my treatment works long enough so that if my cancer ever returns, it returns when there are new treatments I can use to fight this. When I was diagnosed a quick Google search told me I only had 15% chance of surviving five years. I am not willing to take that. I have a family and so much more of my life to live. I have been fighting for four years and I plan to continue for much longer.
I am thankful I am here to spend time with my family. I am thankful for each and every day I have. I have never been one to take things for granted. I always made sure my loved ones were ok and happy. Time with my loved ones was always important to me. But now I just cherish the time I have with them more than I have in the past. I am so appreciative for all that everyone has done to help our family have some 'normalcy’ throughout this battle.
I was given a diagnosis that many fear. I have researched and educated myself on melanoma and all that comes with it. I did not dwell on the 'whys’ and 'what ifs.’ I focused on the “what are we going to do?” When I was hurting and didn’t think I could get through it, I spoke to others and read other’s stories and focused on their successes. I hope that my story can help you the way that other people’s stories have helped me. I want my story to help you know that you are not alone and you can keep going.
I’m not sure if I can say I am a survivor because there are so many technicalities and definitions of what a cancer survivor is. So I will just say I am a cancer fighter! I have always been a fighter and I will never give up this fight. The last few years have been a roller coaster and we have gone through much more than anyone will ever know. But I am not here to bore you with my sob story and all we have endured. Rather I am here to say how grateful I am, and to let who ever needs to hear this know that there is hope! Keep strong, keep the hope.
