Melanoma – A Long and Winding Road

My first melanoma diagnosis required a wide local excision on the tip of my nose (6/12/2018). Sadly, the margins were not clear, so another surgery, as well as a sentinel lymph node biopsy, were scheduled (6/27/2018). The margins on the second set of biopsies were clear so now, I could move forward with the reconstruction surgery. A skin graft was performed using skin from behind my ear to repair my nose (7/12/2018). I wanted to believe that was the end, but instead, I had an aching feeling that life as I knew it would never be the same.

The fear of recurrence would haunt me, and I shared these fears with my oncologist. I thought, “With so many spots and moles all over my body, how would I be able to detect a new spot?” Finding the original spot was easy, as it was on the tip of my nose. My doctor told me, “If the cancer were to come back, it would likely come back on your face, not somewhere else on your body.” My fears were realized when I discovered a new spot on my nose (8/14/2018). I could hardly believe my eyes.  My heart sank as tears rolled down my face.

Navigating a melanoma recurrence

As soon as I discovered the new spot, I called my dermatologist and made an appointment for a biopsy (9/11/2018). When I arrived, the medical assistant asked, “Why are you here,” and I explained, “I discovered a new spot and given my history with cancer, I wanted to have it biopsied.” The assistant said, “Ok, we will have the doctor look at it,” and I responded, “I am not leaving this office without having it biopsied.”

When the doctor entered the room, he pondered over the spot, then said, “This looks a blood vessel, a venus lake.” I had never heard of that before! Coincidently, earlier that same day, I had a follow-up visit with my plastic surgeon. He asked, “What’s going on here,” pointing to the spot on my nose. I told him, “I think the melanoma has returned.” He said, “I don’t think so. This looks like a blood vessel. Maybe it is a result of the recent surgery on your nose.”

As I left the dermatologist office that day, my gut already knew the cancer had returned. I had become all too familiar with the look of the little, brown spot that started this chain of events just three months ago. The call with the biopsy results confirmed it. It was melanoma (9/20/2018).

Take the next u-turn

And just like that, I am right back where I started. I made an appointment with my oncologist to review the results of the recent biopsy (9/27/2018).

“What happened?” I asked, “How did we get here so soon?” My oncologist explained, “The cancer cells must have traveled through your lymphatic system from the original tumor but did not reach the lymph nodes. This process is known as in transit.”

An in-transit metastases (ITM) is given a worse prognosis compared with a true local recurrence and is therefore classified as a stage IIIB or IIIC disease. A PET scan was ordered to ensure that nothing had spread to my internal organs. The results showed no obvious signs of cancer. No obvious signs of cancer- those particular words were not entirely comforting to me.

Another removal

An excision was performed (10/17/2018) to remove the new spot on my columella, that’s the little piece of real estate that links the nasal tip to the nasal base. Once we received the all clear on the margins (10/24/018), reconstruction surgery was scheduled (10/26/2018). This time, the plastic surgeon performed a nose flap. The original skin graft had to be removed during this reconstruction phase.

During my follow up visit with my oncologist (11/1/2018), it was recommended that I receive immunotherapy with OPDIVO and I was referred to the Medical Director of Oncology, known internationally for his melanoma clinical and research work. However, before I made it to my first consultation, I found another spot on my nose (11/5/2018). If you’re counting, that’s now number three.

Next stop: immunotherapy

Given the excision of the two prior melanomas proved to be unsuccessful, the decision was made not to surgically remove the third spot. This surprised me. The idea of leaving this spot to fester on my nose didn’t sit well with me. But I trusted the doctor’s decision and I hoped for the best. I wanted to stop the melanoma in its tracks, and if immunotherapy could finally keep the cancer at bay, then sign me up.

Waiting for a call

I was told to expect a call from the scheduling department in the upcoming week. With each passing day, I anxiously awaited the call. By day five, I told myself, “If they don’t call by tomorrow, I am going to call them.” The following day, the phone rang. It was the hospital calling to schedule the infusion (11/23/2018). I accepted the first available appointment without hesitation (11/29/2018). I didn’t consider the date or the time, I just wanted to get started as soon as possible.

As I hung up the phone, I began penciling in the appointment on my calendar. It was then that I realized the treatment was on a Thursday and my teenage daughter would not be home that weekend. My heart sank. Suddenly, fear set in. What if I experienced some horrific side effect while I was home alone? With that, I started to sob. The thought of getting an IV treatment became very real!

Getting there is half the battle

During the week leading up to my first treatment, I did what most people would do. I Googled everything I could about OPDIVO and immunotherapy. Not only did this educate me on the benefits of the treatment I was about to embark on, but the risks as well.

Before I knew it, I had become overwhelmed with all the information available. I started printing out fact sheets, drug warnings, and cancer staging details. I kept all the information in a 3-ring binder. Methodically, I started highlighting and underlining everything of interest. Next came the list of questions. Lots and lots of questions.

Feeling somewhat empowered by the knowledge I recently gained, I felt ready to walk into that infusion center with my head held high and my emotions in check.

The road to recovery

The ride to the infusion center took approximately 40 minutes. I sat in silence nearly the entire way, just me and my thoughts. With each passing mile, my mind was racing. My insides felt like they were being tied into a knot and, just like that, all my preparation went right out the window.

Upon arrival, my friend and I followed the signs to the second-floor infusion center. I could feel the pressure mounting as we made our way to the elevator. As I stepped into the elevator and turned to push the button, the doors closed and, there on the doors, were the words: Inhale Courage. Exhale Fear. With a ding, the elevator doors opened and, instinctually, I took a deep breath in. As I walked out of the elevator, I exhaled.

Take a seat

After going through the registration process, I was swiftly escorted to chair number 14 and promptly greeted by a care navigator who was very kind and soft-spoken. She provided a ton of information on the services available to me as a cancer patient such as an event calendar, a monthly newsletter, a patient resource guide, and a welcome basket. Truth be told, her kind demeanor distracted me and, before I knew it, I started to relax.

Shortly thereafter, the nurse introduced herself and explained what was going to happen next. “First, I’ll draw some blood, then administer the OPDIVO followed by a saline flush and you can be on your way.”  And just like that, it was over. As I gathered my things to leave, I thought to myself, “That wasn’t so bad after all.”

The roller coaster of melanoma treatment

This experience reminded me of a time long ago when I decided to go on a roller coaster - and I hate roller coasters mind you. As I waited in line, my heart was racing and my mind kept thinking about all the things that could go wrong. The next thing I know, I’m being strapped into the seat and I’m off! Before I knew it, I was back at the starting position. That was when I realized the fear I conjured up in my head was worse than the ride itself.

“Only when we are no longer afraid do we begin to live.”  – Dorothy Thompson