Surviving Melanoma and Loving Someone Who Is
I am a Christian. I am a woman. I am a wife. I am a mother of four amazing boys. I am a daughter, a sister, a granddaughter, a friend. I am a teacher, a school counsellor, a leader. And now, I am a cancer survivor. I visualize who I am through the lenses of these labels. I never thought I would add that last label to the list.
My skin has always been covered in moles and freckles that were a real source of insecurity. It took me a long time to love each spec. I taught my boys to call them angel kisses as they randomly appeared on their skin and that each one was special and unique. I didn’t want to project my complex onto them. I had a mole gradually changing on my shoulder for a few years. Last summer it had changed enough that my dad noticed it peeking out from under my tank-top and made me promise to have it checked. In September, I visited a walk-in clinic for a referral to a dermatologist. My appointment was booked for three months later, in mid-December. The dermatologist took one look at the spot, had his nurse reassign his appointments for the afternoon, prepped the operation room for a local excision, and put a rush on the biopsy results. I walked out of his office two hours later with a frozen shoulder, numerous stitches, and the first sense that my world had just shifted on its axis.
The pit in my stomach because of the dermatologist‘s urgency didn’t allow me to rest for three nights. I spent the hollow hours in the middle of the night with Dr. Google, preparing myself for the worst-case scenario, cancer. Days later, just before Christmas break, the dermatologist’s office called. Hearing invasive, malignant Melanoma cancer was an out-of-body experience. I promptly asked the questions I had compiled in my notes based on my preliminary, scholarly Google research. I had invasive, malignant Melanoma that invaded and filled the papillary dermis (second layer of skin) and was referred to a dermatologist with a specialty in skin cancer. I carried that news with me through the Christmas holidays, sharing it with only my closest network of supporters.
At my appointment three weeks later, the specialist shared that the tumour was not ulcerated, did not appear to invade the lymphatic vascular, had no mitotic activity present, extended 0.5 mm away from the edges of the original excision site, and had present and brisk lymphocytic action. If you have to have skin cancer, these are all the things you want to hear. Even so, there was a slight possibility, because of the depth of the Melanoma cells in the layers of my skin, that cancer could have invaded my lymphatic system. A wide excision surgery and sentinel lymph node biopsy were scheduled for three weeks later. On February 3rd I was put under general anesthetic to remove any remaining traces of cancer in my skin, assess any lymph node involvement, and provide an accurate stage for the level cancer had invaded my body. This would determine any further and ongoing treatment.
On February 25th, I was told that one of my lymph nodes tested positive for cancer, and plans were being made for the next course of action. A second opinion declared my lymph nodes were clear of Melanoma cells and I required no further treatment. Research shows there is anywhere from a 10 to 24% chance of recurrence in the next five years when the lymph nodes do not contain cancer cells. On the other hand, there is a much higher chance of recurrence and metastasis to distant organs when the disease has reached the lymphatic system. Something didn’t sit right with me about blindly trusting the second opinion and I couldn’t release the noose cutting off my ability to breathe. I fought and advocated for a tie-breaker interpretation of my biopsy results. In mid-March, the third dermatopathologist interpreted the cells in my biopsy as “multiple foci of subcapsular melanocytic nevi in the lymph node”, and although a “challenging case”, benign and not metastatic spread of disease. My skin and lymphatic system will be under close surveillance for the rest of my life. I am surviving Melanoma.
The following are eight things I have learned through my journey that I want to share with you. If you are a cancer survivor, you may be able to relate to a few. If you walk this journey with me and have said any of these things, please don’t allow this reflection trigger feelings of guilt. I extend you wholehearted grace. I have said these exact things to others in ignorance. I didn’t know better. But now I do and I want you to have this knowledge too, so you can walk beside others surviving cancer with deeper understanding and compassion.
1. Melanoma is not “just skin cancer”:
Melanoma is an extremely aggressive cancer that can metastasize (spread) to any organ or tissue in the body. Until recently, treatments for Melanoma that spreads beyond the skin were limited, and chemotherapy is generally unsuccessful.
Having invasive, malignant Melanoma; although confined to my skin, as determined by the best protocols, research, and the most advanced technology available at this time; having a cancer diagnosis shook my world in ways I never, ever imagined possible.
Whether due to cancer itself and my body’s response to the disease, healing from surgery, or a residual effect of an accumulation of stress; my muscles and bones ached, I had a constant headache, I couldn’t eat, I couldn’t sleep, my body begged for rest, a dense fog descended on my brain, and my stomach was bound in a knot. It doesn’t really matter what caused these symptoms, they consumed my existence all the same. There is no such thing as “just skin cancer”. Cancer is cancer and Melanoma rattled the foundation on which I stood. I didn’t handle it like a champ. It attacked my strength, my mental health, my relationships, my faith, and my will to live.
2. Positive thinking doesn’t cure cancer:
Mindset is a powerful tool for how you engage with the cancer journey, but there is little evidence that it physically changes cancer outcomes. Mindset encompasses so much more than positive thinking and includes the belief that you are strong, brave, and capable.
Please, think positive thoughts for me, but don’t make me responsible for that task. Asking me to think positively through this journey is like asking an amoeba to think critically about deep philosophical questions. There were days when I felt hopeful, but most moments any positive thoughts I was able to summon felt phony and contrived. The expectation and my failure left me feeling defeated and weak.
I was terrified. I was tallying up all of my deeds; good and bad. I was thinking about all my regrets; all my missed moments and opportunities. I was thinking about all the moments and opportunities that cancer might steal from me. I was thinking about all the people my illness would impact and feeling guilty about becoming a burden. I was thinking about all the responsibilities I hold and who would carry the torch, should I have had to lay it down. My mind was racing with thoughts. I didn’t need to be assigned the desperate job of monitoring the quality of those thoughts.
3. (Closely related to positive thinking and mindset) Smoothies, vitamins and supplements, exercise, meditation, yoga, and laughter don’t cure cancer:
BUT, they do help you feel powerful and some fraction of control over your existence. At a time when you feel your world spiraling out of control, drink the smoothies, take the supplements, exercise, sink deep into meditation, stretch, laugh, and feel powerful!
4. Don’t tell me that you know I will be okay; you don’t:
Don’t tell me that God will protect me or save me from this. God can cure me, but will He, should He, why me when so many others suffer? If He doesn’t cure me, does that mean I’m not worthy? Pray for me and petition God for my life and health, but leave space for me to talk about my fears and doubts and questions without satiating the awkward and uncomfortable moments with cliche quips, like “think positively”, or “I just know you are going to be okay”, or “don’t worry, God has this”. He does have this. That doesn’t mean He will take this burden from me, just that I don’t have to fight this battle on my own strength.
Instead, tell me I’m strong, tell me I’m courageous, tell me you’re in this with me, no matter how ugly it gets. Validate that my fears are scary. Tell me you understand my doubts. Sit close to me and remind me that it’s okay to not have answers to my questions.
5. Cancer doesn’t just affect a person, it impacts a whole community:
When the cancer bomb drops on someone you care about, it gives you a glimpse of your own mortality and the fragility of life. Sometimes it’s hard for people to know how to experience the emotions this conjures up and what to do with them. Some people withdraw, some people press in, some people are doers and fixers and need to feel like they are fixing and doing. It’s ALL okay.
My community was AMAZING through my journey. I had a whole tribe of people praying for me and cheering me on. From dinners prepared for our family for two weeks and our fridge and pantry stocked to the brim, to texts and phone calls to check-in, to notes and cards of encouragement, to family and friends getting my kids to and from their activities and cheering them on in my absence, I felt so very loved and cared for. Every little or grand gesture made a significant impact! And please don’t feel offended or overlooked if I didn’t respond or missed saying thank you. What you did to share your care and concern for me lifted me up and encouraged me. I just might not have had the stamina or memory to respond (praise God for Ativan and T3s). Please know I AM SO GRATEFUL!
6. You are your own best advocate:
If you feel like you need something, say so, without guilt or self-judgment. If you aren’t satisfied with your care team, seek out a new one. If your intuition leads you in a particular direction, trust it, and follow-through.
Throughout my journey, I read as much research as I could get my hands on. I bookmarked research I could refer back to in my discussions with my care team. I pushed doctors and pathologists to answer my questions and support their reasonings. I demanded second opinions when I didn’t feel settled with the interpretation of results or treatment plans. That’s the only way I knew how to climb out of the quicksand and move forward. I’m sure I wasn’t the dream patient, but in the end, I was confident we had as clear of a picture as possible and a treatment plan that made sense to me.
If you love a cancer survivor, patiently listen as they recite research to you, do your own research so you understand what they are talking about, be at as many appointments as possible and have their back through difficult conversations, believe in their intuition and remind them (frequently) that they aren’t crazy.
7. There is no right or wrong way to recover from cancer:
Listen, cancer isn’t curable. After a cancer diagnosis, the best I’m going to get is No Evidence of Disease (NED). Remember all the best practices, research, and advances in technology? They still cannot guarantee that the cancer is 100% gone and there is always a possibility it will rear its ugly head and attack again. I’m left with a lingering, suspicious distrust of the benevolence of my own body, always wondering if that twinge or this ache is the first sign of betrayal and that I need to go on the defence and fight for my life again.
Over time, the voice has softened; instead of a panicked scream, faintly heckling. Things trigger it to raise its voice again and I’m getting used to the constant noise. When I find myself standing again on the edge of a cliff, I take some time to be alone, I listen to music and sing, I pray and beg Jesus to carry some of the burden, I draw my family close, I go see my counsellor, I take an Ativan.
The lesson...do what you need to do to find peace, joy, and a sense of safety. You don’t need to do what your neighbour’s friend’s aunt did to recover. Do what your mind, body, and spirit tell you to do to recover. Take an extended hot bath or take on a new project; just do it your way and in your time, without feeling like there’s a road map to guide the way, check-boxes to check, or a step-by-step manual on how to go on living, instead of dying. If you love a cancer survivor, patiently walk step-in-step with them as they find their way.
8. Cancer changed me:
Cancer, and the glimpse of my own mortality, put into perspective what and who are important. Cancer reminded me that my beautiful family is my ultimate priority. If it threatens my connection with or my ability to be present for those five incredible men, it can’t exist in my life right now. That meant letting go of my career ambitions, ending my constant comparison of myself to others, and the belief that my value comes from their approval, and resisting the urge to pack my schedule so full there isn’t time to breathe.
Let me clarify. My career ambitions might, someday, support me being more fully present for my family. Just not now. In the future, I may have more endurance and energy and be able to take on more activities, if they lead me to deeper connections with my family, but not right now. I will, however, continue the battle of not determining my value by my productivity, possessions, or others’ happiness. I will continue to lean into how Jesus sees me as the definition of how I see myself.
These are important lessons I learned on my journey with cancer. Every cancer survivor will wade through these waters in their own unique way. If you find a piece of yourself reflected in my experience, I hope you feel a little more known and seen. If someone surviving cancer owns a piece of your heart, hold them close. Let them borrow some of your strength and light when they feel their’s fading.
Christian, woman, wife, mother to four amazing boys, daughter, sister, granddaughter, friend, teacher, school counsellor, leader, a cancer survivor.