Wear Sunscreen…Are you channeling Baz Luhrmann right now? I know you’re probably rolling your eyes because two year’s ago I would have done the same. Sunscreen can help protect your skin from developing skin cancer, more importantly Melanoma.
Melanoma is the most dangerous form of skin cancer, the type of cancer that took the life of my husband Ryan. This is the story of Ryan’s journey with Melanoma.
Ryan was fair skinned and had reddish/brown hair. Throughout his life he knew to stay protected from the sun by wearing protective clothing, sunscreen or staying in the shade while outside. The only downside was that Ryan loved the beach. In fact, while we were honeymooning in Jamaica, he sat under a straw umbrella, while I sunbathed for the week. He always did his best to not get a sun burn.
In 2010, I had been bugging Ryan to get a mole on his right arm checked out by a dermatologist. The mole looked huge and gross. He wasn’t all that concerned with the mole because he had had it checked a few years prior and the dr. said that it was probably nothing. Ryan’s mole became irritated and ooze. He went to see Dr. Shurman, who removed the mole and sent it in for biopsy.
Typically, in my past whenever i’ve had some type of test i’ve always figured that no news is good news. If I hadn’t heard from the doctor in about a week, I assumed I was fine. Well, in a day or so, Ryan and I received frantic phone calls from Dr. Shurman’s office. Since Ryan and I weren’t married, the office was not able to release medical information to me. Once Ryan was in touch with the office, they notified him that his mole was positive for melanoma and that he needed to have additional surgery on his arm to ensure that all of the malignant cells were removed.
We were worried but didn’t have enough data or knowledge about the disease to be extra concerned. Plus, I was in the mindset that.. oh, well the doctor will just cut out the cells and he will be fine. This was not the case. Ryan had the mole removed and a few lymph nodes removed from his arm pit to make sure that the cancer hadn’t spread. Again, I was thinking.. it’s ok, he is young and it’s ‘just skin cancer.’ Boy was I wrong, Ryan had two lymph nodes show positive for melanoma. After another surgery to remove MORE nodes, he had a clean node removal. He had a PET scan and a CT scan to identify if the melanoma had metastasized to other areas of the body. The scans came back clean. I thought, we were in the clear, the nodes and mole were removed. He was NED (No Evidence of Disease).
As a precautionary measure, he was advised to begin a treatment called, Interferon. This treatment is an infusion processes that is supposed to be one year long. For the first month, the patient receives infusion five days per week. Once the first month is over, infusion frequency is decreased. This sounds all fine and dandy except, this treatment gives extreme flu-like symptoms. Most patients are unable to work during the first few months. Ryan became very sick, still worked as a tv photojournalist but was only able to do the treatment for three weeks. His body simply could not handle the medication. Still I thought.. wow everything will be fine. He is young and the doctor suggested that the melanoma is NED. Since this was the only treatment that he was eligible for and was FDA approved up to this point he was going to monitor his body with scans every few months.
Fast forward to Fall of 2011. It was about a month before our wedding and Ryan found a lump on his back. Not a mole, a lump. We were semi concerned but I was convinced that there was no possible way that his cancer would return and he had just had clean scans. Plus, we were under the impression that if his cancer were going to return, it would come back to his lungs or in mole form at the original site. Anyway, we went to see his oncologist, who ordered that Ryan get the lump removed. While there, Ryan mentioned to the dr. that he had been having head aches. The dr. determined that they were probably stress head aches and sent us on our way.
We got married, vacationed and returned in mid November. A week later, Ryan had his lump removed, it came back positive for melanoma. He had another PET scan and CT scan, both came back clean or cancer in other areas of the body. He did not have an MRI of the brain, it was not ordered.
Ryan and I decided that at this point, we should seek a second opinion by a melanoma specialist, just to be safe. We were fortunate to get an appointment with a wonderful oncologist, Dr. Dickson, at Memorial Sloan-Kettering Cancer Center in NYC. We didn’t mind making the two hour trip to see the dr. figured why not go and check things out. When we got in to see the dr. he spent two hours with us during that first appointment. He went over every piece of Ryan’s medical history and made sure that all of our questions were answered. We found it interesting that one of Dr. Dickson’s first comments was requesting the results of Ryan’s most recent MRI. Ryan said, you don’t have results because i’ve never had an MRI. Dr. Dickson ordered an MRI of Ryan’s brain and a genetic test to measure if Ryan had the BRAF mutation.
Two weeks later on a Saturday, Ryan had the MRI and the results of the genetic test came back. (This was the same day that Ryan had the MRI) Dr. Dickson called to inform Ryan that he had brain lesions and that he was positive for the BRAF mutation. He suggested that Ryan start treatment with a new drug called vemurafenib right away. Since this was an expensive and heavy duty drug it had to come from a special mail order pharmacy. The drug had to be approved by his insurance company first and then could be arranged to be shipped to our home. We were left wondering, what the heck are lesions in the brain. Well, brain lesion is a fluff word for brain tumor. We had no idea that how long they were in his brain because he never had a brain scan prior to now.
Three days later, before Ryan was able to get to see the dr. or before the drugs could arrive at our home, Ryan suffered a debilitating brain hemorrhage. I could go into details on this experience but for length purposes choose to hold off on that. The hemorrhage left Ryan paralyzed on the right side of his body and he experienced aphasia. Luckily, Ryan didn’t have to have brain surgery. He was hospitalized for a few weeks and sent to a wonderful rehabilitation hospital, where he spend three weeks. In the weeks after inpatient rehab, Ryan was completely mobile again. Most wives get to experience their children’s first steps. I got to watch my husband take his first steps again. It brought me to tears. Being 26 years old and healthy, I had no idea what was happening to Ryan and how far rehab would take him. I was so thankful for everyone at the rehabilitation hospital for taking such great care of Ryan.
He was home, progressing in out patient rehab and with his cancer treatment for about a month and a half. Life was starting to seem normal again, i went back to work and Ryan and I were getting along just fine. This came to a hault in early May.
I came home from work one day and Ryan was experiencing tremors in his right arm. I kept asking him if he felt alright, he would just shrug and say yes then go back to watching tv. I could tell that he was holding his right arm still with his left hand to not worry me. I pleaded with Ryan to go to the ER, he kept saying, i’m fine, no worries. I knew that Ryan had an early morning therapy session the nest day, so I figured that I would assess the situation and talk to his therapist the next day. After his condition began to worsen, we ended up going to the hospital, where he spent a few days in observation. It was determined that his cancer treatment was no longer working and that he had additional brain tumors. Ryan was discharged on a Sunday and was waiting for his Tuesday appointment in NY to determine what his next treatment would be.
Tuesday came along and we piled into the car with his parents to go to NYC. The dr. told us that Ryan would begin a different treatment of Yurvoy + whole brain radiation asap. Before we left the office, Ryan began acting funny and the dr. sent us to the urgent center at the main hospital. When we arrived, the best way to describe the urgent center is to say it looked like a bad episode of ER. The waiting room was packed and there were patients in beds everywhere. This was a bit discouraging especially since Ryan had already experienced a brain injury before, i was nervous that he was having another hemorrhage. Well, aside from multiple hemorrhages he suffered a grand mal seizure in the waiting room. I had never experienced a person having a seizure before, this was by far the scariest moment of my life. They were able to control the seizures and Ryan seemed to get better for a day or so. This was only temporary, he suffered another seizure later that week and passed away the next Saturday.
I am broken hearted and currently in a very bizarre place in my life. So please, if you are still reading, I encourage you to wear sunscreen and get skin exams. I never thought this could happen to us, i’m sure you are thinking.. oh that won’t happen to me. It can.