Dual Diagnosis: Cancer Patient and Survivor

Dual Diagnosis: Cancer Patient and Survivor

I consider a challenge to be a surprise; it sounds more fun. What I was concerned about at the beginning of my cancer journey are things I don’t even think about now. For example, managing the side effects of medication; I have that down to a science. I am a chronic cancer patient, and the unseen challenges/ surprises of survivorship might be slightly different than you think. I am 45 years old and have had rare chronic leukemia for 14 years; that’s about a third of my life and most of my adult life. Wow, to think of that mathematically can be overwhelming. I suppose, “go big or go home?” I also don’t look sick; I may look tired, I might be in pain, but I often have a mask of happiness on. I don’t resemble the “typical” cancer patient you see on TV, which can be both a blessing and a curse.

I don’t look sick, and people assume I can do more than I am capable of, so when I do have to set limits or boundaries, they are often surprised to find out I have cancer. I think, “please don’t look at me that way when I tell you I have cancer.” It is challenging to decide and know when to disclose my diagnosis. In the beginning, I didn’t care, I told everyone because I was treatment focused, but now I am focused on quality of life. Being a survivor can mean that you are subjected to pity. If I had a quarter for every time I heard, “I am so sorry,” I would be wealthy and writing this from a sandy beach at my oceanfront home. I have never wanted pity, especially 14 years’ worth. Please don’t be sorry after I tell you I have cancer, you didn’t do anything, and neither did I. Feel free to say, “that sucks.” I crave and want encouragement, celebrations, and excitement that I am kicking ass.

Surviving something often means you have to give something up. Cancer has taken a lot from me. Peers and family members are married and have careers and families. They plan birthday parties, play dates, and worry about their kid’s homework. I celebrate the fact that I could take a shower and get dressed by myself. I grieve for those missed opportunities. I wanted to be a mother and have a family, a house, and a career, but that didn’t work out. I am not just a survivor of cancer, but of grief. I often feel like an outsider and don’t know many people I can relate to. Being a survivor is lonely at times, an unexpected challenge.

Surprise, I am not brave—most of the time, I am just pretending. If you wish to use the title “survivor,” people expect you should, “be happy you are still here, you are so brave.” Who made these rules? I say break them. Nobody should have to have a bright outlook on life 24/7. Look, cancer sucks. Every day I wake up not knowing what I will or won’t be able to do for the day. The countless medical appointments, money spent on medical treatments and doctor visits, lack of spontaneity, hours spent on the phone with insurance companies, and not knowing when the next medical emergency will pop up are just a few challenges of surviving each day. It is exhausting, and quite frankly being positive 24/7 isn’t possible. I am a survivor, I may never be cured, but I battle and fight. I didn’t choose to be brave, cancer chose for me, and I have accepted that. I have embraced my cancer and don’t fight against it, but instead work with it.

Being a survivor without a cure and choosing to go into palliative care has surprised me too. Cancer just keeps giving (insert heavy sarcasm). This is a new part of my journey. I was shocked at how many people won’t let me have the title of “survivor” because I won’t survive anything. Warning, spoiler alert, we are all going to die. No one survives. I am still constantly being questioned about my terminal prognosis. I am constantly bombarded with possible treatments I should try, told not to lose hope, and that I shouldn’t give up. It’s a challenge to hear everyone’s medical opinion when 99 percent of the people have no medical degree! “Normal” people don’t have to go around listening to how so and so died from cancer, but this person was cured because they ate pickles on Tuesday’s during a full moon (please note this is not medical advice). I wish people would trust me. I am educated and well-versed on my own disease, and I have come this far. My diagnosis and prognosis statistically, scientifically, and medically won’t change, but I am a survivor—I am more than my diagnosis. As a survivor, often you are labeled by the event or diagnosis that you survived. I am no longer Michelle, who has cancer, I’m a cancer patient. Surviving anything shouldn’t mean your choices are constantly questioned. Palliative care wasn’t my choice, the medical field doesn’t have any more viable or safe options for me, but I am choosing to live life more than just surviving it.

These are just a few of the challenges and surprises of survivorship. If I had the choice, I wouldn’t change a thing; OK, maybe a few . . . I would still choose to be a survivor and choose this journey, my journey. It sounds so cliché, but I am proud of who I have become and what I have learned. I can now add to my resume— insurance expert, negotiate a medical bill like nobody’s business, and knows dozens of ways to address nausea—these are just a few of the well-honed skills that cancer has gifted me. Yes, you could learn these skills in other ways, but pause for a second. Imagine all the people I have had the opportunity to meet, speak with, and listen to. That stranger who asked why I was riding a mart cart in the grocery store when I looked “fine” was a teaching moment. At first, I was embarrassed and mad, but it created an opportunity for a discussion on assumptions. I have had 14 years of those types of moments, all unique and some unforgettable. I will consider myself a survivor until I am no longer on Earth. Cancer and life will continue to surprise and challenge me, but I have this.

This article was featured in the March 2023 Unseen Challenges of Survivorship issue of Elephants and Tea Magazine! Click here to read our magazine issues.