Maria Goetz
I was diagnosed with malignant melanoma in September 2013. What I thought was a hemorrhoid that refused to go away for approximately a year was, in fact, melanoma. Due to the location of my melanoma, my local oncologist referred me to Dr. Joshua Mammen at the KU Cancer Center for surgical removal of the melanoma. On September 30th, I had a wide local excision performed. Luckily, he was able to get clear margins but the tumor thickness was 3.8 mm and dimension 2.1 cm. According to the pathology report, the anatomic level was IV (melanoma invades reticular dermis) and the pathologic staging was T3b with ulceration. We were happy the margins were clear but because the rest of the report wasn’t as positive, immunotherapy and radiation were also going to be part of my treatment plan. Interferon was the therapy of choice, which didn’t have promising results. I remember Dr. Mammen telling me when I asked him a few questions, that I had a greater than 50% chance of the melanoma returning in less than 5 years and more than likely it would show up in my liver, lungs or brain. As stated previously, radiation was also a part of the plan. Due to the fact that no lymph nodes had been removed and tested, there were some mixed recommendations as far as my left groin receiving radiation as well as the surgical site. Dr. Mammen felt strongly about it and ultimately my radiation oncologist, as well as my gut instinct, agreed it would be the best course of action to radiate my left groin as well. I just wanted every tiny cancer cell that could possibly be residing in my body to be killed and the sooner, the better!
Obviously, that area of my body had never been exposed to sun or tanning beds, however, I was a sun worshipper! I was a teenager in the 80’s when every model you saw on TV or in magazines had a dark tan and I wanted to look like that as well! I remember “dark tanning oils” were the rage (what was SPF?!) I laid out every chance I got for as long as possible using those oils in the hopes of having the deep, dark island tan that was promised. Unfortunately, my skin tone tends to be on the lighter side so that just meant more time in the sun and more sunburns. I remember getting at least a couple of pretty bad sunburns every spring/summer. I did use tanning beds on occasion but was never very comfortable with them… I felt they were too “risky” but the natural tan from the sun wasn’t. As I got older, SPF was more in the picture and recommended and I felt like as long as I was using a sunscreen or suntan lotion that had SPF in it, I was doing a good job even though they ranged from a 4 to 8. A few years before my diagnosis, we were planning a trip to the Bahamas and even though I was in my early 40’s, I still couldn’t help myself from going after that tan. Apparently my body had decided enough was enough and, if I understand correctly, the melanocytes went a little rogue and hence the melanoma tumor to a most unfortunate place.
Healing from the surgery was definitely not an easy process and treatment wouldn’t begin until the beginning of January. The plan was that I was to receive treatments Monday through Friday for 4 weeks, recover for a couple of weeks, start radiation and then do interferon shots 3 days a week for approximately 11 months. Each treatment for the first 4 weeks took approximately 2 hours so a PICC line was placed prior to my first treatment. I was told the side effects of interferon were similar to a very bad case of influenza… horrible body aches, chills, headaches and nausea/vomiting. I was so scared before that first treatment! Less than 30 minutes after that treatment while on our way home, I began getting the worst headache but figured it had to be from something else because there was no way it would start that fast. We got home about 10 minutes later and after lying down, the chills began. I remember my husband piling blankets on me but I couldn’t stop shaking. Soon after, the body aches began. I have had full-blown, go to the doctor influenza before but never anything like this before. I tried a hot bath praying that would help with no such luck. I remember thinking “how am I going to do this?? This is only the first treatment!” The next day when I went back for the second treatment, the nurses asked how I had felt and if there were any adverse reactions after the first treatment and then adjusted some pretreat medications as well as some others to take as soon as I got home. It helped quite a bit but the exhaustion was relentless. I had to sit down just to brush my teeth because it was too exhausting to stand. Nothing tasted good; everything had a very metallic-like taste. My mouth felt so dry but any type of mint not only tasted awful but also actually hurt my mouth. My dental hygienist suggested bubble gum flavored children’s toothpaste and thankfully that worked. Once I finished that, I stupidly thought the hard part was over. Wrong again.
Radiation was actually the worst part of the entire treatment process mainly due to the location being radiated. I was scheduled for approximately 30 treatments to the surgery site as well as my left groin and again this would be a Monday through Friday process. I made it through the first two weeks and then had to take a two-week break due to the delicate skin needing to heal a little. I received two more weeks of treatment when my radiation oncologist decided the skin was too damaged to continue. My last radiation treatment fell on our 25th anniversary and that was definitely not how I had envisioned our 25th to be celebrated.
I began the shots a couple of weeks after radiation was completed. Monday, Wednesday and Friday I would get a shot in my stomach. My insurance would only allow me to receive these shots at one place… either at home or the clinic… or they wouldn’t cover the cost, which at that time were around $1,400 per shot! If I actually felt good enough to go anywhere, I would have to skip a shot, which my body decided it didn’t like. I had an appointment at KUCC and thankfully checked first to see if I could get done there figuring it would be fine but it was denied. Taking a break from the shots for a few days was a normal process but my body reacted differently. I had a standing appointment with the treatment center for the first thing Tuesday mornings or after a holiday for fluids, anti-nausea and pain medications.
My last day of treatment was March 27, 2015. I had been told that most interferon patients didn’t complete the entire process, as their body just wouldn’t allow it no matter how positive or determined they were. I was one of the lucky ones. Not only was I able to complete my entire treatment, I have also remained cancer free to date! I was also blessed as to live in a small community that rallied around us with not only a fundraiser but also bringing meals, taking me to treatments if needed, but most of all by praying many, many prayers! As bad as all of above sounds, I tried daily to find at least one positive thing and not feel sorry for myself because I saw others that were sicker than I was, whose treatments were worse than mine were and whose diagnosis wasn’t as promising as mine. If there is any advice I could give, it would be to acknowledge your feelings whether it’s fear, anger or sadness but don’t live in those negative places…try to find at least one positive thing a day to focus on. Have FAITH… that doesn’t mean you’re not scared, it means you may be scared but you trust things will somehow work out. Every year the “scanxiety” lessens a little but I’m not far enough out yet to know if it ever truly goes away.
