My journey with melanoma started several years ago with an irregularly shaped mole on my upper left arm. I just didn’t know it yet. In 2014, I had that mole removed and the pathology report came back positive for melanoma. After having a wide level excision and sentinel node lymph biopsy, my condition was graded IIB. I was told to see a dermatologist for bi-annual skin checks. Fast forward to August of 2018 and I experienced swollen lymph nodes in my arm which come back positive for melanoma. After scans of my head, chest and abdomen, I learned that I have tumors on my liver, possibly in my lungs, and in my brain. I was graded stage IV. Starting in August of 2018, I began treatment at Dana Farber Cancer Institute in Boston where I was given focal radiation to treat the tumor in my brain and infusions of Nivolumab to treat the the cancer in the rest of my body.
I guess all of this is my passport for this journey.
I share these few details (and I’ve left out quite a few) for anyone who might be curious about them. I won’t dwell too much on the medical details in this blog, because that’s not what this is blog is about. My world was rocked when I heard those words “stage IV” back in 2018 and I spent several weeks in a zombie-like state before I realized that I wasn’t going to die just yet, and that I had to figure out this whole being alive thing while I still had time.
So life goes on now, although it’s life squeezed between doctor’s appointments, treatments, scans, managing side effects, and a lot of waiting and worrying. I know that the in-between part will be the subject of many future blog posts, but the medical stuff will be there, too. It’s all the fabric of our lives now.
My journey with melanoma began when Rich was diagnosed with stage 4 in August 2018. It actually started in 2014 when he had a mole removed and he was told it was melanoma. One thing that amazes me is how blindsided I felt when he was diagnosed with stage 4. When Rich had the mole removed and told me it was melanoma, I was concerned but not overly so until he was told they were going to check his lymph nodes. The idea that melanoma could spread beyond the skin hadn’t really occurred to me before this. I was sooo relieved when the doctor came out and told me that it hadn’t spread to any lymph nodes. He said that meant that 5 year survival rate was 97 percent and that even if it went to a lymph node it would have been 85 percent. Those odds seemed really good. About 3 years later, Rich noticed a lump on his elbow. It was on the opposite side of the original mole. He had an ultrasound and was told it was a sebaceous cyst. I found it odd that one would have a sebaceous cyst in that area but I looked it up and found info that said it was possible. I never once thought it could be from the melanoma. Later, he found a swollen lymph node but he also had a rash so I just assumed it was his body fighting the rash. I never connected anything and I don’t know why. I am the one who always worries about things. I don’t just believe what doctors say yet in this case I believed. I believed the radiologist saying it was a cyst and I believed his primary care provider when he said watch and wait on the lymph node. I didn’t spend 4 years worrying about a melanoma recurrence because I believed that he had a great chance when I was told 97 percent 5 year survival. The lymph node didn’t shrink so he saw a surgeon. It wasn’t until the surgeon setup an appointment to remove the one lymph node without anesthesia because he suspected melanoma that my gut kicked in and I asked Rich to please call the original surgeon who did the sentinel node biopsy for a second opinion. I have a bit of medical background and I’ve never heard of a surgeon removing only one of the lymph nodes. Rich agreed and called the original surgeon who did a biopsy of the elbow. Apparently, the sebaceous cyst was really lymph nodes! The point being that if I had known then what I do now I would have asked many more questions. I would researched things and maybe Rich wouldn’t have been diagnosed as stage 4. I felt a tremendous amount of guilt when he was first diagnosed because I didn’t react to any of this process the way I normally do. When he was first diagnosed I spent so much time thinking about all the “what if I’d” questions. I waffled between those questions and the “what if something happens to him” questions pretty much every minute of the day. I constantly felt guilty or selfish and sometimes both of those at the same time. Now that things have sunk in and Rich is on treatment that is working at shrinking some tumors and keeping the others in check things have simmered down some. I remind myself, when some of those thoughts come back, that even though if I had done things differently he may not be stage 4, if I had known that it could come back at any time even if it was not in any lymph node I would have spent the entire 4 years in worry mode. I know my worry would have affected Rich and we wouldn’t have enjoyed all of the things that we enjoyed in those 4 years. When he was diagnosed we both seemed to stop living. The whole world stopped. Now, 5 months later, I finally feel that we are settling into things and starting to get back to living. Things will never be like they were before but that does not mean that they can’t be as wonderful as they were before.