I was 35 when my first symptom showed up. I was 36 when I was diagnosed, and 37 by the time I did my very last treatment. It all happened over the course of 18 months in the middle of 2018 to until the beginning of 2020. I tell people it’s like Ripley’s wax museum, believe it or not but what I’m about to tell you is true.
I was diagnosed with an extremely rare subtype of melanoma that makes up maybe 1 to 2% of all Melanoma, and with an average age of diagnosis is 70. I was half that. I ended up doing multiple surgeries, targeted radiation, the latest in immunotherapy treatments, as well as chemo as bridge therapy. When it all failed I had one of the best medical facilities tell me they couldn’t help me anymore, but they did point me in the direction of where to go. The only option I had left and it was a clinical trial for cell therapy that has been in the works for 35 or so years.
I signed consent, and did the prep process, but I was rapidly clinically declining. Right before I was due to enter the hospital for the main section of this treatment, my baseline scans showed I had a brain metastasis and it kicked me out of the trial. I was looking so grim my doctors were telling me that I should probably call hospice and settle my affairs because the likelihood of making it was not good.
In order to stabilize my brain metastasis I had to get SRS targeted radiation treatment to the brain metastasis and have it showing a scan that it was stabilized or in reduction to get back in the study by the end of the year or else that was it. With time running out on the clock, after six days I was able to get insurance approval and then The mass reduced and I was finally able to start the treatment. I needed five days but didn’t have that so I did five days worth of treatment in four and then literally scanned on Christmas Eve. Then the 2 week wait began to see if I got in.
This was the most intense time of my life. I was really freaking out with anxiety. The entire time I played it off like everything was cool, but it really hit home that maybe I might not make it. Anxiety through the roof, sweating, crying and I actually felt like I looked – horrible. For this two week period or less until I could go over the results and find out if I made it, I wanted to spend 100% of my time with family. I was so scared that I was going to die alone in the middle of the night that I didn’t want to sleep. All I could do was just believe with all conviction that I could manifest positivity and that my scans would be good enough to let me back in. I could barely walk. I had no appetite. I was on a palliative regiment of pain meds, which, both physically and mentally got me through it. I didn’t really wanna be under the influence, but I kind of had no choice. Every emotion you could think of went through me in that short period of time, and the moment came to finally find out whether I was gonna be able to get back in the trial. I saw the doctor and I remember it vividly.
I recall sitting down in the chair right next to her as she pulled up my scans on the computer and, with confidence, said that I had pseudo progression, which means it went up before it came down. But it was proven enough to let me back in. This moment is etched in my brain, when I close my eyes, I can see the room and the tears fall from my face. Shortly after, I was admitted into the hospital. I would spend the next two weeks bringing my white cell count to a blank slate, and then finally given my treatment. It was followed up by a really hard-core active therapy, which gave me some very intense side effects that I still remember as the most painful thing in existence. The emotions were again all over the place, but I also remember being allowed to roam the halls and jam the music in my room as loud as I wanted. Hospitals are not made for your comfort, so I remember just being so landlocked that I couldn’t wait to break out. When that day came, it felt like heaven and I was walking on water.
That was in January 2020 and I had to recover during Covid but that was the best year of my life and it’s been great ever since. I feel truly blessed. It’s taken a while to really talk about my experience and relive it all but as I was seeking help, I was referred to Stupid Cancer as a resource because I was diagnosed in my mid 30s and had to recover in my late 30s. Since I had a very extreme rare experience for this very rare cancer, I know how lonely it can feel. When I was looking for someone like me and so I can share my story and be that person for the next then it’s all worth it.
By: Chris White