In My Own Words, by Karen Roberts
Date Diagnosed: 05/01/1989
Almost three decades ago (May 1989) as I was visiting the medical clinic on Ft. Polk for a sinus infection, the young Army physician I was seeing happened to notice the mole on my upper left arm that had recently become irritated and itchy. As I had had a few moles removed as a teen, I did not think anything about having it removed when he asked. Not more than a week later, I got the call that the mole was melanoma. My life with the most deadly form of skin cancer had begun.
After a wide-excision of my upper left-arm and removal of all the lymph nodes in my left armpit (none positive), I was put on a twice-a-year x-ray and exam. Life went on, our family grew to five, and melanoma became part of the distant past; though I did stay sun-smart and went to the dermatologist once a year.
Fast-forward to 2005, and we had moved back to the Midwest near family and were busy with children and careers. I was teaching and coaching in a local high school so I was always feeling tired and run down especially at the end of volleyball season. That fall in 2005 had been extra challenging. I had had a few strange dizzy spells and had awoken with night sweats on several occasions. Motivation and energy were non-existent, but I still pushed myself to go to the gym a few evenings a week. It was there early November, on the leg press machine that I felt the lump on my inner left thigh.
Pea-sized and hard, it felt like one of the few sub-dermal cysts that I had experienced before; but it still gave me a slight pause and mild concern. Timing was bad because we were approaching the holidays so I didn’t bother to try to get in with my doctor until after the rush was over, but I was constantly feeling the lump and trying to convince myself that it was not growing- it wasn’t going away either.
By the time the end of January rolled around, I had started to experience other issues including strange bruising on the back of my left thigh. I finally shared my concerns with my husband who did everything to reassure me but also insisted that I see my doctor as soon as possible.
I was convinced that I was talking myself into a recurrence of melanoma (looking back now, I KNEW that something was wrong; I felt “off” and more tired than I had ever felt before). Going in for my post-operative appointment, I talked myself into believing that all would be alright; it was only a cyst, nothing more.
Within a week’s time of learning that melanoma had returned after 16 years, I underwent all the tests and scans only to learn that I had lesions in my brain, lungs, right arm, and left leg. Stage IV had roared into my life and I could not see how I would be able to survive it.
Fortunately, I am an information seeker and a believer. As an educator I was driven to find out as much as I could from as many experts as I could visit. I also was convinced that everything works out the way it is supposed to, and I was at peace (though scared) with that. I knew that to truly have the best hope of surviving melanoma, I had to take an active part in the treatment regime and really understand my options so I could choose what was best for me. The doctors and experts were amazing; everyone of them contributed to my decision.
I first decided to have gamma knife treatments on the two lesions in my brain. After that, I would begin the oral chemo drug temozolomid (Temodar) as my systemic treatment. It had had limited success with melanoma but I liked the fact that it crossed the blood brain barrier and maybe could kill off anything the gamma knife did not. What the drug could do for the other sites, the largest being in the bottom lobe of my right lung, was uncertain at best; but I could always hope.
Unbelievably, within a couple months of starting the chemo (360 mg for 5 days every month) all the lesions in my body began to shrink! By 5 months the lesion in my lung had shrunk to the point that a lobectomy could be done now that the tumor was no longer pressing into my diaphragm. The remaining 3 sites also shrank to the point that they were not detectable on any scans. My melanoma specialist had me remain on Temodar for 16 months.
During this time I was able to continue working; but after a recurrence in the brain in the spring of 2007 and a third gamma knife then issues with brain swelling, focal seizures, partial paralysis and eventual craniotomy , I decided that life would have to take a giant step in the low-stress direction. I retired from teaching to focus on my health and what time I had with my family.
Now, 10 years later, I am still NED! I can’t explain why. Who can? For some reason, my chemistry and my disease responded to the treatments. One of my doctors suggested that I might also have a slow-growth type of melanoma which “blooms” every so many years. Whatever the reason, I am beyond grateful to God and medicine.
For those diagnosed with melanoma, I would suggest four things: 1) Become informed about all your treatment options and get opinions from as many melanoma specialists as possible. 2) Play an active role in deciding YOUR treatments for YOUR melanoma. 3) Seek the help of family, friends, spiritual community, counselors, etc to help you work through all the emotions that are part of dealing with a disease like melanoma. 4) Keep your hope alive by knowing that you matter. Your story and your life mean something in the big picture- you are loved! Find a reason, a way to keep hope by your side even when it wants to leave you.
Even though I believed in the value of my story, it was difficult to keep hope through the ups and downs. I still fight the fear of having to deal with melanoma again in the future, but I keep hope alive by being part of a melanoma support group, sharing my story with others, and being grateful for every day I am alive!