Melanoma: A Love Story

Last April, on a day when I was studying for the DSM final exam, melanoma showed up in my life again. It came in the form of a call from the dermatologist who had removed a tiny little spot on the edge of my original, six-year-old scar. “I’m sorry,” she said, and I don’t really remember what she said after that. I found myself alone in my parked car completely at a loss for what to do next. It was a Friday.

On the following Monday, a friendly nurse called to discuss my options and match me with an oncologist who would lead my treatment at the Melanoma Clinic. With my cancer’s return, I had graduated to stage 3 and from yearly visits at a nice and cozy dermatology office decorated with inspirational posters (Improve your self esteem with fillers! You can have the body you always dreamt of!) to having a “team” at the University of Michigan Cancer Center, where the inspirational images featured the words “survivor” and “warrior.”

Over the next couple of weeks, I teetered wildly between fear, anger and even shame. I was afraid this time would be it. I felt shame for no longer being a cancer success story, but merely a realization of everyone’s worst fear. I was angry for letting myself believe that I’d be the exception to the cancer rule and be able to tell the story of “that one time when I had cancer” instead of telling the story in present tense: I have cancer. I felt like a failure.

Most of all, I was angry because this disease was not working with me. I had followed all the rules to help ensure it would never come back, and yet here it was, offering a big middle finger to all my exercising and clean eating and sunscreening. I wasn’t ok with having to put my family through the pain and anxiety that comes with the possibility of losing a mother, a wife or a daughter. I didn’t want to live a life tainted by a disease that strikes terror in people’s eyes. I hated being the focus of pity and worry. I hated my body for betraying me. In low moments of deep irrational thinking, I even imagined my husband remarried once I was dead, and felt jealousy. Nothing made sense. Nothing seemed real. I moved through finals week and the end of the girls’ school year ticking boxes and connecting dots.

***

5/11: I feel so old at 44 some days, as if my life was on fast forward and I better get to my bucket list soon, tomorrow, today. I wonder what will become of the material shit I have and though I know it doesn’t really matter, I wonder if one day my family will have to come home to a house filled with my things and empty of me. I don’t really care what happens to my things, but the thought of causing them suffering makes my chest tight and I can’t breathe. I don’t want to be writing a will and considering whether I should undergo treatment or not. I don’t want to wonder whether the things we do together will become the last time we did something way too soon. My feelings are all over the place. I am angry, sad, normal, walking in mud, distracted. I don’t know what to believe or expect. Will things turn out ok? Will this thing kill me, or will it disappear?

6/20: I just received notice that I have been awarded a scholarship for next year. I was proud and happy, but I immediately wondered if I would be able to continue the MSW program next year, or if I’d have to put school on hold because of treatment costs and side effects. The first year of grad school required a good amount of effort, and I was healthy. How will I do it ill? Why now, after I finally found a career I love so much?

***

Life has an irrepressible way of continuing even as terrible things happen, and nothing is a better reminder that we need to keep living than having children, a family and a job. I couldn’t really spend my days in my head trying to make sense of what I would do next because there was too much life to be living.

After a few weeks, I worked up the courage to tell a close friend, L, about my diagnosis. While she was visibly shaken and I felt shame for causing her to worry, I noticed that sharing my “secret” helped almost immediately. L didn’t make promises she couldn’t keep, (it will be alright! Everything will be fine!); instead, after asking how she could help me, she added, “this is your life now.” Hearing her normalize my diagnosis helped me realize I would need to learn to make space for cancer within the life I loved. I would have to integrate the countless appointments, skin exams, blood draws, CT scans and MRIs in between buying stuff to cook dinner, spending time with my husband, and shepherding my girls through puberty. And to do this, I couldn’t look at my body as an enemy that had failed me – I had to see it as an ally that would work with me.

Years ago, I had read Mary Elizabeth Williams’ op-ed in the New York Times, A Second Embrace with Hearts and Eyes Open, her story of how melanoma had radically changed her relationship with her partner. I now read her book, “A Series of Catastrophes and Miracles,” which chronicled her diagnosis and treatment. Her candid storytelling and humor inspired me to strive to live in the present moment instead of getting swept away by the fear of what could be. I started telling myself, “today I feel great. Today I can take care of my family. Today I can go for a run.” I made adjustments to my original plans to make room for cancer, and I resolved to start living again.

With my husband’s support, I decided to join a clinical trial evaluating whether certain treatments prevent recurrence and metastasis of melanoma. Agreeing to take part in the trial meant that my original summer plans to conduct grant-funded research in South America while giving our girls the opportunity to spend time with grandparents, attend school and improve their Spanish got tossed out the window. This was hard for all of us to accept, but when cancer shows up, plans tend to disintegrate. I had jokingly nicknamed the time I’d have off grad school my “summer of squats” because I was going to focus on spending time with my family and on getting back in shape after spending months sitting down writing papers. Instead, this would be the “summer of melanoma,” and I would be spending a good chunk of it at the Cancer Center wearing those awful hospital gowns that put you at continuous risk of exposing your unmentionables. (Maybe the squats would come in handy after all).

Since deciding to live my life in spite of this massive change in plans, I’ve been focusing on how to take the path of least resistance. Each time a new challenge shows up, I ask myself, “what is and what is not in my control?” I work on accepting what I can’t control and on making decisions about what I can. I let myself overthink everything for a few days. By the time I make a decision, I let go and I accept what is. This is my “recovery” process. Each time I acknowledge that there is disappointment in not being able to have the life I initially envisioned and planned for myself and my family, I recover faster. With each day that passes, I settle into accepting my new reality more easily. Each time I focus on what I have now rather than what I have lost or may lose, I love my life even more. So far, this cancer business is turning out to be one unexpectedly beautiful love story.

***

6/8: I am sitting in the Melanoma Clinic office surrounded by doctors. A bright light is pointed at the top of my head and they are examining every inch of my scalp looking for evidence of skin cancer. One doctor calls my husband over so they can teach him what to look for and how to look. The three of them are discussing what they see – a mixture of bald spots, scar tissue, scabs and a few stitches from the last three melanomas the surgeon removed the week before. My heart is breaking because my husband has to look at my train wreck of a head scouting for bad news. That should not be his job. He should look at my body with lust and desire, not fear. I don’t want him to have to worry about how or where to touch me. I don’t want to be fragile and breakable for him. I don’t want this for us. This is not who we are.

Instructing together at Grattan Raceway. Photo (c) Rich Chang

Since melanoma first showed up, my husband has been by my side offering the kind of support that gives an introvert like myself space to make sense of things along with the kind of humor that makes a good laugh irrepressible. He knows how to offer me the right balance of support and levity, and this time has been no exception. He has readily taken on responsibilities beyond the ones he already had without complaint or grudge to allow me to focus on my health and treatment. I’ve often asked him how he knows just what I need, and he likes to say, “because I was made for you.” I believe this. Like me, he wants to live our life focused on what is, not dwell on what could be. We are very much living in the present moment these days, from our meals together, to our dog walks, to our race track driving (he always wins), to our competitive exercise routines (he also always wins). Cancer has highlighted the energy and brilliance in our marriage, and for that I am grateful. I long to grow old with him and am not ready to consider it not happening. I wish he didn’t have to experience the fear and sadness that comes with the possibility of losing a wife. I once believed I’d already exhausted my luck by finding him and marrying him, but in the last three months, I have fallen more deeply in love with my partner of a decade than I ever thought possible.

***

5/13: When I first tell my girls that the cancer is back, one wants to know the facts (what does that mean? How do you know?) while the other cries quietly and says nothing. I hate that I am causing them pain. They look so small and so grown up at the same time, and I wish they didn’t have to deal with this. I am tempted to lie, to say nothing more of cancer, to make it go away for them. I wish I had some concrete answers to give. I can’t make any promises.

5/20: I look at my daughters and teeter between adoration and anxiety when I see their carelessness on the soccer field, playing under a cloudless sky. They are twelve years old, and careless is exactly how they should be. I want them to remember summers spent in play, not filled with fear of the sun. I think of my own childhood summers in Peru, hiding under beach umbrellas, white skin protesting the Latin American sun. Cancer was a word I didn’t know then.

***

A mother’s fear of not being there to see her children grow up is only superseded by imagining them having to cope with losing a parent at a young age. When my melanoma first showed up, the girls were young enough that we didn’t have to tell them too much. This time around, they are old enough to understand but too young to bear the burden. For a few weeks, I struggled with how to include the girls in this process. I strongly feel that children shouldn’t spend their days worried about their parents’ welfare, emotional or physical, and I wondered just how I would honor their right to know while preventing them from falling into the inappropriate role of caregiver.

Eventually, my husband and I decided we would share information about my diagnosis and treatment with the girls focusing on what is, not what could be (either best or worst case scenario). We committed to letting the girls know what we know or decide first, so we can face this as a family. Just as my response and adjustment to the news took a while to process, we imagine theirs will too, and we are hoping that by keeping an open-door policy it will encourage the girls to process their feelings and questions as they come. For the most part, thankfully, they are typical adolescents worried about school, friends and hairstyle challenges, and I am very much ok with that. Cancer has given me a strong perspective on how parenting a preteen can be filled with lovingly witnessing their self-discovery, and how lucky I am to be navigating this with my strong and witty girls.

My motivation. Photo (c)Kat Foley

***

Initially, I wondered how to tell friends that my cancer had returned. The whole thing seemed so surreal, like a bad story that belonged in the past. I hate delivering bad news, and I hate asking for help even more. When cancer hits close to home, its aura can be terrifying and it can be tempting for people to keep their distance. Yet, to date, friend after friend has shown us so much love and willingness to stay put.

Our close friends R&T moved in even closer, consistently supporting us in academia, car and kid events, and reliably making us laugh. T offered food, help, babysitting and dog sitting. Our friend and dentist, S, readily offered her help and dismissed my refusal with her usual no-nonsense delivery, “this is something I can do for you and this the time to accept help.” N and her husband R called and sent a note offering support in whichever form was needed, especially if it meant including happy hour mojitos. My social work classmate, P, made time to see me in between supporting her parents through a house fire and driving to Chicago to see her fiancé and somehow managed to bring me a decadent robe embroidered with my name (“It has a hoodie so if you feel like a diva during treatment you can just pull it up!”). B, my longtime therapist, called soon after finding out and set up a session; it was as if she magically understood that I was struggling to call her on my own. R texted to set up a drive with three other car-loving couples. So many friends have reached out offering love, childcare, meals, coffee – too many to list here. Even strangers have shown me surprising kindness, down to the young man who operated the CT scanner I hopped on a week ago. “I was working at a factory when my grandparents got sick,” he told me, “and I knew I wanted to do something in medicine.” He adjusted my pillow with such attentiveness, gently asking if the contrast burned and if I was doing ok. This awful disease keeps showing me just how many loving people I am surrounded by, and I am humbled. Every single act of kindness is making cancer more bearable.

***

In the past few months, I have had to come to terms with the idea that my melanoma reappearance is less of an event and more of a chronic disease. For however long I live, I will be living with cancer. And although I am nowhere near at peace with the fact that my melanoma has decided to reappear, I have become better at focusing on what is right now, not what could happen to me.

When I wrote my first cancer blog a couple of years ago, I considered why I wrote at all, and whether I should write about these very personal matters. Over the last decade, I have found that when I share my failures, fears and hopes with others, my problems don’t just become less of a burden to me – they also help people who may be going through something similar feel less alone. When I was first re-diagnosed, I felt shame, and that shame is what kept me from reaching out for help sooner. Shame is a powerful force in keeping us isolated and preventing us from healing. In writing this, it is my hope that if you are keeping a secret that brings you shame – addiction, illness, failure, frustration, a poor decision you once made – you will be brave enough to reach out to your community and unburden yourself. Sharing your secret will increasingly inoculate you against shame, let you breathe easier, and eventually set you free.

I also wrote this blog because in the past, I have tended to post pieces focusing on what I have already learned, but I haven’t really posted any writing about what the messy process of getting to an “aha!” moment is like. This blog is about the process, not the kernel of wisdom at the end. I don’t know what’s going to happen beyond the fact that I will be joining a clinical trial in July. I have no idea how I will feel during treatment (the odds for me feeling good aren’t looking in my favor). I don’t know what else I will learn from this experience, if anything at all. I have no way to guarantee if I will be able to hold on to my optimism while all of this unfolds. Right now is the calm before the storm, not the sunshine after it. But this is still my life, and thanks to the love my family and friends so openly give me, it is very much a good life.

My cancer story so far is a love story: a story about who and what really matters. A story about hope and acceptance occupying the same space. A story about getting to know the darkest and weakest parts of yourself and learning to accept and (maybe) love them. A story about how people can come together to lift us up when we are wading through places frighteningly to close to death. A story of how we can find light in every dark moment if someone shines their love on us. It is the kind of story none of us grows up wanting to write, but also the story we are the most grateful for.

***

OneRepublic’s song, I Lived, has been a favorite of mine for a while, but it is even more so now. You can listen to it here.

The title of this blog was inspired by the title of the Salon piece, “Cancer: A Love Story.”

SHARE THIS POST: on Twitter on Facebook on Google+