Leah Adams: My Family’s Journey With Stage IV Melanoma

Read the first part of Leah's Story here: https://www.ihadcancer.com/leah-adams-my-stage-1a-melanoma-journey

At the end of January 2021, I got a call one morning. It was my mom, my dad had a seizure while driving. She was with him and had gone in the ambulance to the hospital. The first hospital completed a round of testing and said “We can’t handle this case here. Something really bad is going on.” They life-flighted him to another hospital, who did more testing and found lesions on his brain. A bunch of them lit up his scans like a Christmas tree. Their immediate thought was that the lesions looked like metastatic Melanoma, but they needed to complete a biopsy to be sure. 

As you know, doctors never want to operate on the brain unless there are no other options. The doctors completed a full CT scan to see if they could find lesions anywhere else in his body for a biopsy. The CT scan came back showing lesions on his lungs also, again lighting up like a Christmas tree. The doctors performed a lung biopsy, removing one of the lesions. Sure enough, it came back positive for metastatic Melanoma. They compared the lung lesions to the brain lesions, confirmed they were the same, and told my dad that he needed to start treatment immediately.

Sure enough, it came back positive for metastatic Melanoma.

This was all so much to take in. How is his Melanoma back? He just had Stage 0 Melanoma two years ago, and it was removed. His metastatic diagnosis came in early 2021, before the COVID vaccines were widely available. I couldn’t even see my dad in the hospital, and my mom was barely allowed to stay in the room with me.

Once my dad left the hospital, the doctors immediately created a treatment plan. He wasn’t a candidate for lesion removal surgery. The Melanoma in his lungs and brain were too small and scattered to be successfully operated on. His first round of treatment was gamma knife radiation to treat the brain lesions. He had 7 rounds of brain radiation, which was a lot to undergo. After that was over, he completed immunotherapy.

Two years of our lives went towards focusing on his treatment. When Melanoma is not caught early, it can result in difficult situations like my dad’s. His Melanoma completely changed his life. After his seizure, he had to be on seizure watch and wasn’t able to drive. He had to take seizure medication daily. The immunotherapy took away his adrenal system, and he has to be on hydrocortisone for the rest of his life. He also experiences lingering joint pain, fatigue, and chills. 

Cancer treatment is a blessing but also a double-edged sword. The treatment can help mitigate a problem, but can cause 72 new issues that you don’t find out about until much later. One example, the gamma knife radiation was excellent at treating the cancer but gave him brain necrosis. This necrosis impacts his overall cognitive function and memory. 

Chemotherapy has been the long-standing treatment for many cancers. Now, immunotherapy is the gold standard treatment for certain cancers. Immunotherapy enhances the body’s immune system to fight the cancer instead of infusing the patient with other medications that will fight the cancer. Chemo is very hard on the body, but immunotherapy can be just as hard. Your immune system is crucial for all bodily functions, and immunotherapy is training the body to do something it’s never been taught to do before. It’s a shock to the system. 

My dad’s first year of treatment in 2021 was pretty bad. He went to the ER at least four times with seizure activity and other bad treatment side effects. There were points where we thought he wasn’t going to make it. Luckily, he got through 2021 and made it through almost all of his immunotherapy rounds. Every month that you are in immunotherapy, you get bloodwork to clear you for the next month of treatment. At first, everything was good. HIs brain and lung lesions were shrinking, dissolving, or remaining stable.

On his 20th or 21st scan in November 2022, they noticed cloudiness and fog on his lung scan. Lung inflammation. The doctors worried about disease progression, so they completed a bronchoscopy. A bronchoscopy isn’t as invasive as a lung biopsy, but they still have to stick a camera down your throat into your lung. It’s a rough procedure, and luckily my dad was put to sleep for it. 

Fortunately, the inflammation wasn’t disease progression. The immunotherapy was actually the root cause. We had a family meeting with the oncologist who said “I’m feeling very hopeful about your dad’s situation. He’s had a lot of cancer drugs in him over the last year and a half, and he’s responding well to treatment. But, he has three immunotherapy sessions left. If we do those three sessions, he might not die from Melanoma, but might instead die from inflamed lungs.” My dad wasn’t able to finish those last three rounds. Ever since December 2022, his brain and lung scans have remained stable. No active disease.

Our lives revolve around his scans every three to four months, on almost the same schedule as my skin checks. If my dad had been diagnosed ten years prior with metastatic Melanoma, it would have been an almost certain death sentence. There were no good treatments available. We’re so grateful that my dad was able to be diagnosed when he was, the fact that immunotherapy works for a lot of later-stage patients is truly a blessing.

Now, my dad has been able to return to a somewhat normal life. He got his driver’s license back a year ago. He had to step back from his pre-cancer job and now works part-time at a golf course. He’s a golfer so he loves his job.

It’s also clear to us that there must be a genetic component to Melanoma. My dad and I are in a few research studies at the Cleveland Clinic to help scientists try and pinpoint a Melanoma gene. There are many types of cancers that could be linked to genes that just haven’t been discovered yet. The more people enroll in research studies and volunteer, the closer we get to a cure or improved cancer treatments. Not everyone responds to treatment like my dad did, so more options are still needed.

While my dad was in the middle of treatment, I stepped into a secondary caregiving role. My mom was the primary caregiver, and since I had no other siblings, I stepped up wherever she needed help. My dad and I weren’t ever particularly close, I was always a mama’s girl. His cancer journey gave me a second chance to rebuild a relationship that wasn’t there before cancer.

Caregiving, especially with a parent, allows you to practice empathy and understanding.

My dad’s Melanoma and my Melanoma presented in very different ways. My caregiving during my journey required mental and emotional support from my support system. My dad’s caregiving required complete support: Physical, social, mental, and emotional. I became an even more caring person after getting a glimpse into what my life will look like when I eventually have to care for my parents again.

Caregiving for my dad allowed me to learn how my dad needed to be cared for. You can’t care for a person the way YOU want to care for them. You have to care for them how THEY need to be cared for. Caregiving is an act of love, care, respect, and support. Men often have a different dynamic when it comes to being cared for. They feel the need to be strong all the time, so being physically or mentally weak is difficult. How do I care for my dad while also empowering and motivating him to keep going? For me, that meant segmenting tasks. I would start a task for my dad and then encourage him to finish it himself, for that sense of accomplishment. Nothing went perfectly, there was frustration, annoyance, sadness, and anger. But we got through it, and I’m a stronger and better person because of it.

Talking to friends & family about my cancer was very different than talking to them about my dad’s cancer. People don’t realize that for any type of cancer, you are never truly free from cancer. Cancer is something that’s going to be a part of our lives for the rest of our lives. The chance of recurrence is there, the constant scans and doctors appointments are there. People took my dad’s situation more seriously because he was Stage IV, but they still didn’t fully understand what metastatic Melanoma was. If he hadn’t started radiation and immunotherapy when he did, he probably wouldn’t be alive right now. It’s hard to communicate this to people who have not themselves experienced or seen a family member go through an advanced Melanoma diagnosis. I can’t fault them for not understanding, nor do I want them to have that experience. 

There’s a huge stigma against skin cancer with people thinking “You can just get it cut out.” That’s so false. If anyone says that to me, I will always explain my dad’s story. He did not have brain or lung cancer. He had Melanoma that spread due to not being caught early, which can be just as deadly as any other type of cancer. 

Connecting with others who have had Melanoma or another type of cancer creates a community with a greater sense of consideration and understanding. I became involved with the skin cancer community. My parents joined a cancer support group within their church. Through the support of others, we managed to handle this huge shift.

I also try to raise awareness and educate others about Melanoma when I can. I still see family and friends on social media laying out in the sun, very dark and sunburnt. Knowing what I’ve shared about myself and my dad, it’s hard to see those close to me still choosing not to take care of their skin. But whenever I enter this mindset, I remember to take a step back. I did those things too before my diagnosis. I felt invincible “Skin cancer would never happen to me.” I just hope they don’t have to learn the hard way like I did. 

Melanoma devastated our family, but also brought us closer together. Now, we’re all looking out for each other and making sure we take care of our skin. We’re protecting our bodies and our health because we know what could happen if we don’t.

Photo courtesy of author.