My journey as a caretaker began in August 2019. The love of my life, Nicola, or as I loved to call her Niki, was diagnosed with mucosal melanoma – a terminal cancer with an average of three years to live. It was the most devastating moment of my life, but somehow it was familiar. A major paradigm shift had occurred for me, as it did when my mother passed away from lymphoma in 1977. It was a difficult challenge to embrace this new but somewhat familiar reality. The big difference was Niki was my wife.

The first emotional impulse was denial. It can’t be! The doctors must have made a mistake. At first, I found it difficult to accept this new reality. I had flashbacks and nightmares. Niki’s refusal to accept the diagnosis as a death sentence and her resilience in standing up and fighting this dreadful disease was a clear sign for me to honor her wishes and begin my role as a caretaker by putting everything else aside. 

Soon after the diagnosis was verified, Niki had surgery. It appeared to be successful. The tumor was removed and then she began treatment. For the first year, things appeared normal. We pondered whether to tell the kids, but Niki decided it would be best to wait and see how things progressed with her treatment. 

One of the most devastating aspects of being a caretaker, especially with someone you love dearly, is to put your emotions on hold to be there for them – all else becomes irrelevant. Niki took this on as a challenge and decided to fight it by going through several clinical trials for the first year of her Illness.

One of the major issues was that this type of cancer is extremely rare and researchers are just beginning to study it. One in a million get it, so there is not much research available. The first thing Niki did was search the internet. It is probably the worst place to go for real, reliable information regarding this type of cancer. Her oncologist had only a couple of patients and had little knowledge or research on which to make decisions. So, Niki began participating in clinical trials. It was like shooting darts in the dark, but Niki was determined to try anything. Her response every time was, “I’m ready. Let me have it!” She was the most courageous person I have ever met.

Managing her appointments and going through the different types of trials and tribulations became the new norm. She had to take a leave of absence from work and dedicated herself fully to managing the cancer. One of the most frustrating aspects of this process is that the patient is the only one who can communicate directly with the doctors, and they will not provide information without her consent, even if you are her next of kin. This is when I first felt impotent and inconsequential. 

I had never been a caretaker before, but had a slight idea from what I learned from my mother’s journey with her cancer. It helped me make important decisions during the most crucial times with Niki. 

I learned a great deal throughout Niki’s long battle against cancer. I hope now, through Mucosal Melanoma Warriors, to share what I learned to make it easier for other caretakers and individuals with rare cancers–and move the day closer when we will have a cure for mucosal melanoma and other rare cancers.