Never ever did I think I would walk a cancer journey…..
Summer 2015, I noticed a black mole on the back of my left thigh. I thought it was ugly but didn’t pursue checking it out. December 2015, I was standing in my Mom’s home and mentioned to her “this mole” on my leg is rubbing against my jeans and itching. My Mom immediately said, please make a dermatology appointment.
The following few days she asked me if I made the appointment pushing me to do something about it, so I called and scheduled a derm appt. The mole was removed about a week later. I have had moles removed during my childhood and once this mole was removed, I didn’t think much about it. The dermatologist was going to send the mole to be biopsied.
A few days later, the Dermatology Doctor called me and said, “Amy, you have Melanoma and we need to see you in our office today”. When I hung up the phone, I Googled Melanoma and went into worry mode”. I called my Mom and she left work and we made our way back to the Dermatologist. During this visit, they confirmed Melanoma and the Doctor said to me “Get Ready for a Journey”. Those words will forever me in my mind. It has been a journey!
There have been so many details, surgeries, hospital visits and treatments that it would take me more time than I have right now to write, but in summary, January 2016 I met with a Melanoma Surgeon. At this time, I was staged at 3B. The first surgery removed several lymph nodes and those lymph nodes were sent to a pathologist. After my surgery and follow up appointment with my Surgeon, I just knew this was a bump in the road and I felt confident all was going to be over. A surgery and this would be the end of this!
My Surgeon shared different news. One of the lymph nodes was Melanoma and it was unknown if it had spread to other lymph nodes. The news was beyond devastating. I was in shock. My surgeon was so caring and shared with me that I would need another surgery and the surgery would be very risky. The Surgeon would need to do major reconstruction including reattaching muscles and scraping arteries to get to all of the lymph nodes. The news was so much that he asked me to go home for a week, think about the recent diagnosis and return to learn more about the surgery.I did this and moved on with all of the mental strength I had.
March 2016, the surgeon rolled me away for the surgery. My family waiting with great love in the waiting room. After the surgery, I had to learn how to use my leg again and lived in a skilled nursing facility to work with physical therapist. I was in great pain but living with the elderly at a nursing facility was an experience I will never forget. I met friends in elderly people and it was a time that was good for my soul. My Friends were a gift beyond measure at this time in my life. Returning home to a family ( Mom and Brother) that painted a great big WELCOME HOME sign.
It was determined that I was “cancer free” after the second surgery. During my last few days in the rehab facility, I walked around the corner to enter my room and my best friend Angie stood with party hats and buzzers to celebrate the cancer free status. It had been 30 days since I had been home. Returning home with drain tubes in my leg, I did all I could to continue to work as a Realtor. I remember working one day for 13 hours with drain tubes in my leg. Sometimes, we don’t have a choice to be tough and tough it out. 2016 included many ER visits where my Mom sat late nights and into the morning with complications from my surgery or side effects. 2016 was tough…very tough, but I had tremendous support and love from my family and friends.
Although, after the second surgery my surgeon used the words “cancer free”, I would go onto care with an Oncologist. I took a test that determined the that I was 75% out of 100 of high risk of getting Melanoma again. We started immunotherapy treatment as a prevention. After my 4th treatment, I became very sick. November 2016, on my birthday I was care flighted to the hospital so sick I couldn’t see. The doctor had called my Mom to let her know I was having a brain hemorrhage. There was several opinions and I was admitted to the hospital in critical condition. My first day in the hospital this trip, a doctor and team (not my doctor) came in my room to give me the news I had Brain Cancer and I need to start Radiation immediately.
I was in total shock asking God…how can this be God? There were no tears, I couldn’t cry, I could do anything but be in shock. While I was alone in my room this night, a nurse came around my bed and said, God is right here with you Amy. Tears want to roll down my face writing this because God knew I needed to hear this from an Angel of a nurse.
The next day I was so sick, I couldn’t sit up but needed to ride in a Van over to the radiology building to get fitted for a radiation mask. I love to laugh and joke, and the driver was trying to joke and I was in severe pain I couldn’t even tell you my name. Getting fitted for a radiation mask and throwing up every few minutes is an experience that was one of the most horrible in my life. Having a net go over your face and thinking Brain Cancer has got to be the most bottom of the barrel thoughts!
I was still in disbelief and my Mom was in disbelief. My Mom searched and Googled and searched and googled some more and she was not convinced I had brain cancer. She was my advocate and searched symptoms that pointed to brain swelling. She shared this with my main oncology and he determined she was RIGHT! I had critical swelling of my brain and neck. There is a name for it, but I can’t remember at this time. The Immunotherapy caused the almost deadly effect of brain swelling. Thank you to my Mom, her wisdom and perseverance I never had to wear the radiation mask or have radiation.
I think I slept all of 2017 away! The Immunotherapy had caused such damage. I would sleep…work…sell real estate…sleep some more. I was out of my mind fatigued but pressed on. It seems like a waste of a year being so tired and recovering. I continued my every few month doctor visits and scans with a doctor who was not great. He was goofy, quick and dismissed my concerns.
I was not on Immunotherapy in 2017, because the damage the other immunotherapy had caused was so critical. Thankfully in the Fall of 2017, a new doctor came on board and he was professional and caring! He is still my Melanoma Oncologist. Fall 2017, I had a scan. The beast was back! I had 10-12 new tumors in my leg and later the next month a new tumor in my pelvis. The aggressive Melanoma was in transit moving up my leg from the original site.
I was now staged at 3C. It is now 2018
Many decisions were needed. I was considered inoperable because the tumors were so many and so large. I started on my second type of Immunotherapy. Only a few months of this Immunotherapy and some of the tumors had decreased, some returned and one new tumor was in my right forearm. Melanoma was on the move!
There were many complications from these tumors…pain and hospital visits.
I am now Stage 4 and am currently on my 3rd type of Immunotherapy and into 3 1/2 years fighting Melanoma. I have an upcoming scan to find out what is going on with the tumors. Most days I am strong, but I have sensitive days. It is very emotional. I try not to talk about it much but it has been my life and I am ready for it to be over. Marching in faith is my only option and I am ready to get my life back.. This is only a summary of my story. As the original dermatologist said, Get Ready for a Journey. It certain has been and continues to be, but I am going to live my best life.