Sixteen Years With Leukemia Taught Me to Savor Life

I’ve lived with large granular lymphocytic leukemia for 16 years and have learned to spend my energy wisely, embrace palliative care and choose joy over anger.

I am 47 years old and have had large granular lymphocytic leukemia (LGL) for 16 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 it's "Go big or go home." I was diagnosed at the age of 31 with chronic T-cell LGL after a year of begging my doctor to listen to me. Doctors told me my symptoms were in my head, but I refused to concede. I continued to push and push until I got a diagnosis. I knew it wasn't in my head. I felt relieved that I had a diagnosis, but it was overwhelming at the same time.

After my diagnosis, my primary care physician referred me to an oncologist. The first one gave me a prognosis of five years. I reacted with defiance, seeking another opinion. My second oncologist, unable to provide a prognosis due to the rarity of my cancer, offered me something I craved: hope. Since then, we've been a formidable team, facing this challenge head-on.

Since 2009, at age 31, I have been fighting against this leukemia. I have undergone numerous oral chemotherapy treatments and extensive steroid treatments to keep my LGL from progressing. It has been an exhausting journey, but I am blessed to have survived 16 years. I have maintained some work or volunteer positions throughout the entire time, which means a great deal to me. Serving my community is my calling.

I also don’t look sick; I may look tired and in pain, but I often wear a mask of happiness. Because I look “fine” people assume I can do more than I am capable of. I think, "Please don't look at me that way when I tell you I have cancer.” “Please don't be sorry either after I tell you I have cancer; you didn't do anything, and neither did I. Feel free to say, "That sucks." 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.

Cancer has robbed me repeatedly. Peers and family members are married and have careers and families. They plan birthday parties and playdates and worry about their kids’ 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 cancer patient is lonely at times, an unexpected challenge.

After 16 years, many people have called me brave. Surprise, I am not brave — most of the time, I am just pretending. The numerous medical appointments, the money spent on medical treatments and doctor visits, the lack of spontaneity, the hours spent on the phone with insurance companies, and the uncertainty of when the next medical emergency will arise are just a few challenges of surviving each day. It is exhausting, and maintaining a positive attitude 24/7 isn't always possible. I am a survivor. A cure may not be possible, 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.

I have recently, in the past couple of years, transitioned into palliative care, a choice I never dreamed of ever making. My diagnosis and prognosis, statistically, scientifically and medically, probably won't change, but I am a survivor — I am more than my diagnosis. I am not Michelle, the cancer patient; I am Michelle who has cancer.

Palliative care wasn't really a choice. The medical field has no more viable or safe options for me, and I have chosen to live life, not just survive it. In my 16th year, I decided to savor the good days and minimize the bad days as much as possible. Instead of fighting, I partner with my LGL. I have learned that my energy is precious, and I spend it very carefully. I am done with the “why me?” questions because, why not me? I am done being angry; it costs too much. Sixteen years have taught me a lot, but the recurring lessons I come across are to make sure the people around you know how much you love them, don’t hold on to hate (it’s another cancer), spend your time wisely, and do what you love — a huge thank you for sharing your time to read my story.

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