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Jackie King: The lost voice of melanoma

Being so involved in the melanoma world, I meet fellow cancer patients on a too-frequent basis.  More and more, these patients are not of geriatric age, but my age or younger.  One such patient, Jackie King, was diagnosed in 2012 with melanoma at age 19.

She and I met while doing a video spot at the Melanoma Research Alliance Scientific Conference last year.  I asked if she would be willing to do a blog post, looking to connect her story with the teen and twenty-something audience, which I reluctantly admitted was outside my late 30's demographic.  Her words are in italics below:

Ever since I was diagnosed with melanoma I have wanted to share my story, but I kept finding it too difficult. I could not get the right words and I found that it was because I was trying to hard to sound optimistic and inspirational throughout the whole story, when in reality I was not feeling optimistic or inspirational the whole time during my struggles with this disease. So I decided to just tell my story the way it happened and exactly how it felt for me during these events, and one can decide whether or not my story inspires, saddens, brings hope, etc.

Jackie has shared her story before; besides the MRA video, she teamed with the PASS Coalition to press Congress to pass the The Sunscreen Innovation Act, which was (finally) signed into law in November 2014.

It all started with a mole on my back. I had no idea at the time that it could mean that I had melanoma; in fact, I didn't even know what melanoma was. I just left it alone for a few months. Then it began to bleed and was incredibly painful, so I went to see a dermatologist to have it removed. I left that day happy to be rid of the painful,l nasty mole and forgot about it. Then I received the call that forever changed my life. I was 19 years old and I had skin cancer.

I became numb for weeks after I heard the news... I never cried once. I just stumbled around each day with my family around me trying to comfort me and crying for me and I found myself comforting all of them instead of myself. I hated how I was unable to feel and angry and annoyed at having to comfort others about my situation when I was just so confused myself.

Like many patients, she was apprehensive and anxious.  Unlike many patients, she was dealing with a physical and emotional roller coaster while still in her teens. 

I was recommended to Dr. Keith Delman, a surgical oncologist at the Winship Cancer Institute in Atlanta's Emory University Hospital.  He talked my family and I through it step by step, which made me feel a bit better after having to wait for answers for what seemed like ages after my diagnoses. I had surgery to remove lymph nodes from my back at the initial site of the melanoma to find out how far the cancer had spread. Waiting for the results on how far it had spread was a nightmare. 

Try and remember what you were doing at twenty. See if this kind of fear existed in your world.  It certainly didn't in mine.

The surgical oncologist said cancer had only been found in two of my lymph nodes out of the 15-20 that were removed. Even though this was the case, my doctor decided to do a second surgery on the left side of my neck to again remove more lymph nodes. This surgery really scared me, because having surgery in my neck was a very different experience then the other surgeries I had done. I looked and felt like Igor from "Frankenstein" because I had to keep my head tilted to the side and my arm bent because of the pain I felt, even if I lightly tried to stretch the skin. My family and I thought I was going to be permanently stuck this way, but thank goodness this was not the case. You can barely even see a scar there now. The results for this surgery were very positive because no cancer had been found in any of those lymph nodes and scans revealed no evidence of cancer anywhere in my body. I was once again a clean slate. Hallelujah.

Jackie's words echo the hope all cancer patients hold on to, while recognizing the vulnerability we collectively share.

I went through a really rough time dealing with my anxiety and depression after dealing with the surgeries and my own inner demons, but I eventually started working and taking an English class, trying to get a degree in psychology. I even started working out and eating healthier and was feeling pretty good, until one day, after some sit-ups, I started to feel a sharp stabbing pain in my abdomen. For about a month the pain gradually became worse and worse, until I was just doubled over in pain and finally went to the ER thinking I pulled a muscle. They diagnosed me with a urinary tract infection, so I took antibiotics for about a week, but the pain just kept getting worse.

I went back to the ER with my father and they again did some scans, but this time they said they found an abscess of some kind in the lining of my abdominal wall. They called my oncologist at Emory and I was immediately transferred to Emory that night. My oncologist reviewed the scans and said it could be an abscess, hematoma, muscle tear, or tumor. Guess what it turned out to be? A cancerous tumor. Here I was again. So I had another surgery to remove that tumor and I had to remain in the hospital for about a week because of pain, constipation, etc. It was not a fun surgery.

And this is where it ended – the voice of a teenage cancer patient went quiet. A few emails were unreturned, and a quick social media search turned up empty. That's when the "worry" of an incomplete blog changed to a pit in my stomach. Google confirmed what I already knew – Jackie passed away from melanoma in September 2014.

Ever want to throw something at the TV, the wall, a computer screen? Reading her obituary was one of those moments. When patients connect with other patients, a bond forms, much like a traditional support group. Some losses are harder to take than others, especially when they come from left field. Especially when those lives had so much left.

Jackie's voice is not forgotten. Her mission is carried on by her father Ross, who has started the Jackie King MRA Young Investigator Award. Family and friends have contributed generously so the next generation of melanoma researchers will continue to find ways of treating and, one day, curing this disease. Her spirit and legacy will touch the many lives of future patients she never met, but will have her to thank for contributing to their recoveries. Ross shared with me the editorial he penned shortly after Jackie's death; a wonderful read even though it's based on a heartbreaking topic. Too many – even us cancer survivors – too often misplace time, energy, and focus on the wrong priorities.

In a touching epilogue, Josie provided the healing perspective only a child's love can. A few minutes after reading the obit for the first time, she came into our home office and asked if I was OK. Surreptitiously wiping a few tears away I said yes, and she came over and gave me a big hug and said, "Daddy, I love you." Putting her to bed that night, I told her a little more about Jackie, and even let her see the videos. She asked if Jackie could hear her if she prayed for her. I told her of course, Jackie was with God, so if she just talked to God, Jackie would listen. She closed her eyes, said, "I miss Jackie", and then cuddled with a blonde-haired guardian angel doll she now calls her "Jackie Angel doll."

Jackie's post was written in the summer of 2014, and re-compiled in January 2015.  I was able to talk to Ross King at length at the MRA Scientific Retreat, and he enthusiastically granted permission to run this. Tuesday, the Georgia State Senate unanimously passed a Memorial Resolution in her honor. Today, March 26th, 2015, is Jackie King's 23rd birthday.

T.J. Sharpe shares his fight against Stage 4 Melanoma in the Patient #1 blog. Read more »